It became obvious early on, that so many inconsistencies were occurring, it would be to our benefit to capture significant events on paper. "Mom's Journal" is a daily log  depicting our Mother’s nine and a half month roller coaster bout with Cancer.

Ours is a story of love, courage,  frustration, and a testament to the need for a “second opinion”.

Mom was initially diagnosed at Ottawa Community Hospital with Peritoneal Mesothelioma. We were told she was in the final stage (4) of her disease, and our only option was to let nature run it's course.

The staff at CHO stressed to us that medical intervention was out of the question. We were told Mom was not a candidate for surgery, chemotherapy, or radiation. They would do their best to send her home, and to make her comfortable throughout her last one to three months of life.
 

Mom's cancer was later correctly identified as Pseudomesothelonean Adenocarcinoma by the Pathology Department of the Mayo Clinic in Rochester, Minnesota, and was substantiated by the staff of the Loyola University Hospital. Both cancers are identifiable by the lung's detachment from it's lining.

This condition allows the lung to fill with fluid, thus prohibiting it from fully expanding. Loyola was one of seven hospitals in the country that was performing a new surgery to correct this deficiency.

A very sick Mom

Who knows how long Mom’s been ill? She’s had so many surgeries, and has been on so many medications for her arthritic conditions, no one’s quite certain when her discomfort actually began.

Throughout most of her adult life she’s dealt with pain at some level. But she was also known for keeping some of her aches to herself, or she might be willing to share them with her sister Ruth. The last thing she wanted was for anybody to think she was a complainer, and she certainly wasn’t going to become a “burden”!

After learning of her disease, we discovered that she’d been incurring pains throughout her body (shoulder, back, legs, abdomen, chest) for some time.

It wasn’t until she was unable to do the simplest tasks that everyone realized there was something terribly wrong. She couldn’t do a simple load of clothes without her breathing becoming extremely labored.

April 20, 2000

On her 70^th birthday (April 20^th, 2000), Mom was noticeably not feeling well.  She was taken out to dinner that evening but complained of tiredness, shortness of breath, and barely touched her food.

April 23

A family Easter egg hunt had been planned the weekend, but when Sunday came, she was unable to participate in the festivities.

April 25

She was taken to see her family doctor at the Ottawa Medical Center on Tuesday. Dr. Patel looked at her in Dr. Manigold’s absence. He examined her and took x-rays. There was something suspicious on the x-rays, so she was admitted to hospital with suspected pneumonia.

Community Hospital of Ottawa

April 26

Dr. Manigold discussed the findings with our family, explaining the need drain her lung to improve her breathing. This was an intricate procedure, often resulting in the lung collapsing, so Mom would be sedated.

On Wednesday , Dr. Manigold established IV’s and Mom was placed on Oxygen. She was given heparin to aid in preventing a stroke during the procedure, which began at 1500 and lasted until 1645. A syringe was used to remove over two liters of clear  (but bloody) fluid.

First Mention of the "C" Word

April 28

On Friday, the fluids had been examined, and Debbie was told they didn’t like the looks of it. The fact that it was bloody suggested she might have cancer. At this point, the type of cancer was not given.

Dr. Manigold also said he would not be back for a couple of days.

April 29

On Saturday, part of the tests came back negative but the Cytology results weren’t expected back until Monday or Tuesday.

April 30

On Sunday more x-rays were taken and they showed the amount of fluid in her lungs had increased from what initially showed up on Friday.

May 1

The results of the cells examined from her fluid came back as “suspicious”.

• Dr. Manigold called in a Thoracic Surgeon (lung specialist) from Streator Hospital (Dr. Joh).

• Dr. Joh recommended scheduling a thornoscopy (open chest biopsy) of the right pleural area on Tuesday to identify where the blood and fluid were coming from. He also wanted to get a sample of the tissue  showing up on x-rays.

• CT’s (cat-scans) and more x-rays were also taken.

• Initially, Tuesday appeared to be completely booked but they received a call late Monday and said they had an opening to do the procedure for Tuesday.

May 2

On Tuesday, she was taken to the operating room between 0900 and 0930 for the thornoscopy. The procedure necessitated splitting her ribs, so she’s expected to experience a great deal of discomfort for several weeks afterwards.

• At 1100, Dr. Joh called Julie and said he’d looked around and didn’t see any cancer inside the lung. Since he couldn’t tell where the bleeding was originating, he asked for permission to open her up. She told him to do whatever he had to do.

• Noon – Dr. Joh reported that Mom was in recovery but he hadn’t opened her up after all. He saw what appeared to be cancer cells in the lining of her lung and there appeared to be a tumor there. Confirmations of cancer could not be given until results of the biopsies were returned from Pathology.

• It was then decided to insert a chest tube to assist in draining the fluid from her right lung (her left lung looked normal and didn’t appear to be affected). It was during this procedure that Mom’s right lung was punctured causing the air leak that would result in the chest tube remaining for until June 1st.

• When she came out of surgery her lung had collapsed.

• Dr. Joh told Julie it appeared that Mom had inoperable lung cancer.

May 3

On Wednesday more x-rays were done and Dr Manigold/Joh were still waiting for pathology results. We were told that Mesothelioma was a very painful cancer and it appeared that Mom was in the final stages of the cancer. They said surgery was NOT an option. They said the best they could do for her was to patch her up and send her hope to be as comfortable as possible. We mentioned to the doctors that we were considering Mayo and asked Dr. Manigold to contact them to start the transfer. Mom had still not been informed that she had cancer.

At this juncture, we decided that Mom needed to be in a hospital that could offer her more hope. I mentioned to Dr. Manigold that we were contemplating moving her to Mayo and he said there was nothing they could do that CHO couldn't. Through lots of research, we found that depending on the hospital, varying levels of treatment were available for cancer patients. CHO only offered level 1 treatment, while Mayo had 3 levels of treatment. He agreed to follow up with Mayo.

May 4

On Thursday, Dr. Manigold said he had talked with a surgeon at Mayo and there was a new type of operation only being performed by 7 surgeons in the country. Mayo just happened to have one of those doctors, but he said he wouldn't release her for transport in her condition.

Today, we told Mom that she had cancer. We discussed taking her to Mayo where she could benefit from every conceivable treatment option. She was happy with that.

May 5

Complications developed today. We noticed a green fluid accumulating in the pump reservoir. Three nurses looked at it and not knowing exactly what had caused this, they decided to replace the reservoir.

A few hours after replacing the reservoir, it was decided that the tube now had a leak. Dr. Joh was called in to shorten the tube. He had to re-suture the area where the tube was inserted.

 Immediately following this procedure, her face began to swell. I suggested to her, that she looked like a beach ball with eyes!

At first, they thought she was having an allergic reaction, so they prescribed her Benadryl. When she continued to bloat, the nurses called in Dr. Manigold. He in turn called Dr. Joh, who said she probably had air under her skin, and they could insert a 2nd tube to allow the air to escape.

We were livid!

While outside pacing the pavement, our cousin Dianne suggested we check with Chicago area hospitals such as Loyola. We had already reached agreement that we were going to give Mom the best care available, so Didi started making calls. She immediately came back and said she had spoken with one of Loyola's VP's (Mary Fitzgerald), and they were preparing for the transport. Mary assured us that Mom was going to get VIP treatment at Loyola, and they offered all 3 levels of treatment...plus the new surgery!!!!!!

Once again, I confronted Dr. Manigold, and he said it was going to be very expensive to move Mom anywhere, and the insurance company wouldn't cover the cost without his signature. Plus, I would have to take full responsibility for moving her.

We told him to expect a call from Loyola's VP within the next 15 minutes with a formal release request and transport details. Furthermore, any costs to be incurred, or assumption of responsibility were not an issue for us.

On Saturday Mom was transferred via ambulance to Loyola University Hospital. Within five minutes of her arrival, Dr. David Alvarez was reviewing her charts and x-rays.

He went over her complete medical history with us.  He asked where her pathology slides were, and we told him Dr. Manigold had already forwarded them to Mayo. He said he’d contact them to have them sent to Loyola.

Loyola University Hospital - Mayfield, Illinois

Mom received the best care possible during her visits to each facility at the Loyola University Health System.

I informed Dr. Alvarez that CHO was discussing inserting a 2nd chest tube to take air out of her lung, and he said new x-rays and cat-scans were needed to assess her condition. Apparently, those taken at CHO were not done at the proper angles.

He returned after examining the new CT's and X-Rays, and  said her air leak was two-fold.

1. The problem with her bloating was strictly mechanical. Without placing blame on CHO, he said it appeared the tube inserted in her chest had a small gap where the it was sutured in place. This was repaired immediately, and the swelling subsided.

2. The larger problem was the fact that her lung was detached from it's lining, and an additional leakage resulted. Bubbles were visible in her pump reservoir indicating the leak. The new surgery would be required to fix this .

May 8

Mom was moved from the North wing on the 6^th floor to the West wing. The North wing was for new incoming patients. The West wing was for patients starting treatments.

May 11

On Thursday, Dr. Gramm and Dr. Vigneswaren talked with Mom shortly before 0900. We hadn’t arrived yet, so she relayed to us that they were planning on waiting until Monday to see if the air leak would self heal. If not, they would do surgery.

When we arrived at 0900, we talked to Dr. K (John) and Dr. Alvarez and they concurred that the decision on whether or not to operate would occur on Monday.

• If the air leak does not self heal, surgery will be performed to close the leak.

• If surgery is necessary, as long as they have her open, they will look more extensively at the mass/severity/progress of the tumor.

• The cancer does NOT appear to be in the heart lining as was first suspected.

• There does appear to be some sort of mass in the upper area of her right lung as well.

• If the leak does not close by itself, surgery may be more of a risk than a benefit.

• Mesothelioma is not a cancer that is curable by surgery.

• The pump indications (amount of bubbles and quantity of fluid) have been decreasing each day, which would indicate the leakage might be healing on its own. The color of the fluid is also getting lighter.

• Radiation is not usually an effective treatment for Mesothelioma.

• Without surgery, would the leakage continually come back?

• What is the size of the cancerous tissue?

• Are the lymph nodes affected?

• How many layers of the lining are cancerous?

• Would removing the lung lobe or lung in its entirety (along with the affected layer of lining) be considered, or is there NO surgical option?

• Is chemo an option?

• Is radiation an option at all?

• If neither chemo nor radiation were options, would there be any kind of follow-up treatment?

• What treatment is going to give Mom the best quality of life without jeopardizing her health?

• Do any of the pathology slides represent the fluid from her lungs?

• Does the fluid have cancerous cells?

• If the fluid were cancerous, would this increase the chances of the cancer spreading?

• We were told the chest tube could act as a path for the cancer to travel. How much of a risk is this?

• Will she regain the use of her right lung? (Partial or otherwise)

• Will fluid continue to accumulate in her lung once the air leak is sealed?

• Will the scar tissue continue to develop?

• Does the accumulation of fluid or bleeding within her lung affect her stamina/resistance to infection?

• If fluid were to continue, would she have to be drained periodically?

• Does this fluid cause adverse conditions such as difficulty in breathing, shortness of breath, body aches and pains?

At 1540 they took Mom for a blood gas (oxygen levels), a lung scan and a pulmonary breathing test.

New Diagnosis (Adenocarcenoma)

At 1805, Dr. Swinnen said they received the report from Mayo concerning her pathology slides. Mayo felt the cancer had been misdiagnosed. Ottawa had sent the biopsies to either Peoria or Springfield, which resulted in the initial diagnosis of Mesothelioma.

Mayo diagnosed her with Adenocarcenoma rather than Mesothelioma. Adenocarcenoma is a “metastic” cancer, which means it spreads.

Mayo is supposed to fax a copy of their report and forward the pathology slides to Loyola. Surgery will probably be held off until the Dr. Vigneswaren team can review everything. Tomorrow (Friday), cat-scans of the abdominal area will be done to further verify the correctness of the new diagnosis. If the cancer is Adenocarcenoma, it had to originate somewhere other than the lung lining.

May 12

At 0830, Dr. Gramm and Nurse Vicki talked with Mom and reiterated the comments made the night before that it appeared her cancer was, in fact, Adenocarcenoma. He mentioned that this cancer often involved the digestive tract. He described a procedure using a substance called talc that might be performed to seal her leak. This would be applied between her lung and lung lining to make the two areas bond to each other.

At 1015, Dr. Swinnen, Dr. Alvarez, and the female Dr. did a quick exam prior to sending Mom for her abdominal cat-scan.

At 1530, Dr. Gramm and Nurse Vicki informed us that the cat-scan showed something abnormal in Mom’s abdominal area. They thought a biopsy might be in order on Monday. Fluid from her pump was going to be sent to Cytology for tests to look for cancerous cells.

May 13

0600 - Dr. Alvarez visited and said the CT had shown something near the stomach in the intestinal area. They felt this cancer had originated in one of the 25 glands in her body. The kidney and liver had been ruled out.

May 14 (Mother’s Day)

Mom was in very good spirits on Mother’s Day. The doctors discussed the possibilities of getting the chest tube removed on Monday.

May 15 – Antibiotics prescribed for fever

Early Monday morning Mom was fine when we arrived at the hospital. Dr. John stopped in and said surgery to remove her chest tube would not be done today. They were still waiting to get slides from Mayo.

At 1000 we were all discussing the old neighborhood on Union Street and she was actively participating in the conversation. She was still extremely sharp mentally. At 1145 while sitting up in her chair (part of trying to rebuild her strength) she started to have problems staying awake. Her head was dropping and she had developed a muscle “twitch” in her hands, neck, shoulder, and arm. She had no appetite at all.

By noon, she was having problems answering questions. She was becoming disoriented. We asked the nurse to check her vitals, and they said everything was normal. Dr. Alvarez came in to check her and had her perform some motor skill tests as well as asking her a sundry of questions. To us, she appeared to execute these tests flawlessly. Nurse Vicki changed her dressing due to a small leakage on her bed linens.

As the afternoon proceeded, she tried to sleep but basically stared at the television, stared at us, and seemed to be very distant. Her skin tone had become more and more pale and yellowish and her eyes were very sunken. When being talked to, she would look at us, but didn’t really acknowledge us. Her answers to questions were ”yes” and “no”.

She finally drifted off to sleep sometime before 1600 and slept until they brought her lunch tray around 1700. When we woke her for her dinner, she was much more confused. When asked questions about her children, she couldn’t answer correctly. She had to really exert herself to answer questions, but she seemed to be trying very hard.

We again asked Dr. Alvarez to look at her and she now had difficulty not only answering questions, but also in performing motor skill functions. Dr. Alvarez and Dr. K (John) talked with us in the hall and said they were looking at three possibilities:

1. Stroke

2. Seizure

3. Cancer in the brain

They also said that the twitching, fever, high kidney counts, etc could be a result of her defenses (immune system) starting to break down as a result of the cancer. They had expected to start seeing these types of symptoms. He said it was like an old car that you took in for repairs. You know something is wrong with it, but as you start to work on it, other things start to break down. Unfortunately, he said Mom was starting to fall apart in front of our eyes and he apologized for that.

Her vitals were taken again and she had developed a 102 temperature. She was prescribed antibiotics, but was first taken downstairs for a brain scan. They also asked a neurologist to examine her. The neurologist (Pin Lin) talked with us afterwards (2030) and said there were no indication of broken blood vessels (from a stroke) and no indications of a cancer mass in her brain. Since her white blood cell count had increased significantly, she felt the disorientation might be from an infection, which would explain the high fever. They were unable to do a contrast (shoot dye into her brain to look for cancerous lesions) due to high kidney counts. These counts led to the doctors increasing Mom’s IV solution earlier the day before.

She said there was no life threatening signs for the moment and we should all go home so she could get a good night’s sleep. Once she was given her antibiotics, we left her for the night.

May 16

When we arrived at the hospital Tuesday at 0900 the nurse said Mom had a bad night. She was very cold and didn’t feel good. She asked to NOT be given a bath. She thought it would make her colder. She was more responsiveness than the previous day, but was still somewhat disorientated. She was a whole lot sharper than the day before. Her twitching seemed to be gone.

Dr. Alvarez mentioned that he had talked to Dr. Manigold and the pathology results from Mayo had been sent to CHO. Loyola was asked to sign a release form so the report could be forwarded to them.

Mom had now lost 20 pounds since her admittance to the hospital in Ottawa. As the day progressed, she began to have more and more problems retaining her thoughts and gradually began to lose her ability to be alert. Early afternoon we noticed a continuous twitching in her feet. At 1700 her temperature seemed to be going back up. The nurses checked her vitals and her temp was 102.8.  The nurses placed her in ice packs to bring the temperature back down.

Surgery Day - May 17

Wednesday 0900 – Dr. John did a quick exam and Mom was pretty much back to her old self. She was sharp as a whip. He informed us that Dr. Vigneswaren was planning on surgery to remove the chest tube. She was not allowed to eat, drink, or eat ice chips. She had not eaten well the day before either.

Nurse Vicki discussed Mom with us and she said the surgery was going to be for a right thoracotomy, pleurodesis (talc), and a possible biopsy. She said they weren’t sure if an infection was causing the fever or not.

Dr. Swinnen, Dr. Alvarez, and the female Dr. came in to see Mom and also let us know surgery were being planned for 1400. Dr. Swinnen mentioned that she did have an infection in her chest and the surgery would be performed to clean out the chest area and to patch the air leak in her right lung. We asked if there were any results from testing her fluid and they said there appeared to be cancerous cells in the fluid as well.

Dr. Vigneswaren came in to talk with us when she was moved to the recovery room. He said the found a large mass of cancer on the outside of her right lung. He surgically removed most of this cancer because it was the reason her lung was not inflating correctly.

Rather than using a “talc” to patch the air leak, he used a chemical in conjunction with scraping the lung and lining to get the two areas to bond. There’s a 60-40 chance that the procedure will take hold and the leak will remain closed.

They’ll keep an eye on the leak over the next several days and if the procedure is successful, they’ll remove her chest tube next week. She would then be able to go home for complete recovery from the surgery and would later see Dr. Albain (female) for any additional treatment (chemo). She’ll be in Intensive Care for a day to a day and a half.

If the air leak comes back, they’ll do something to shorten the tube to enable her to come home. There was no infection found in her chest area and they did NOT look at her abdominal area at this time.

Once Mom was moved from the recovery room to IC, we were allowed to see her. She had an epidural in her spine and wasn’t in a great deal of pain. She had a button she could push when she felt a need for pain medication. Her color was better and she was tired. We noticed a very small amount of bubbles in the pump reservoir when fluid would come in from her lung.

May 18

We talked with Dr. John first thing in the morning and he said she was looking good. While doing the pleurodesis they also took additional biopsies from the lung area. When we were allowed to see Mom, her left hand was extremely swollen and they had heat pads on her left hand and arm. The swelling had been due to Arterial Line used during surgery. It had infiltrated the skin and the skin was filled with fluid. The heat would remedy the swelling.

Dr. Vigneswaren came in to for her check up and said she was doing better than any of the other surgery patients. When I asked about he small leak that appeared to still be there, he said everything looked good, they’d keep an eye on the leak and if it persisted, they’d take steps to deal with it in a few days. Her appetite two days prior to surgery and coming out of surgery has been nil. She’s now on a liquid diet. She got sick after breakfast this morning (threw up) and is running a low-grade fever (over 100).

May 19

On Friday, Dr. Vigneswarin came in around 10:00.  He said Mom’s air leak seems to be slowing down and that she’ll go to a room as soon as one is available.  She’s still receiving intravenous antibiotic.  Her appetite is still poor.  She only takes about 1/3 to ½ a bowl of soup, a single serving container of ice cream and part of her milk. The nurses had to wrap her left wrist and put bacitracin on it.  When they removed the silk tape the previous evening, a layer of skin came with it. At 6:25 p.m. she moved to a room on the third floor.

May 20

Mom up for 3 hours after breakfast and prior to bath at 10:45 Doctors in before our arrival at 9:00.  Said the air leak looked like they may be able to remove the drain tube in a day or two.  Need to see about removing the epidural.  At around 10:15, Mom coughed 2Xs and bubbles re-appeared in the collector tank.  (Continued to bubble the rest of her stay.)

Appetite still poor. Ate a frozen fruit bar, 1/3 c. cottage cheese, and 3 bites of soup for lunch. Her weight today is 90.5 KG. She coughed and gagged, throwing up some phlegm and fluid, probably about ½ cup.  Had a small amount of brown blood in it. Coughing up until 1:00 P.M., at which time she took a nap.  When the coughing started, her ear lobes and neck appeared to be red, a condition we’d noticed previously prior to a fever.

May 21

No special notes for today. ????

May 22

Mom stayed up 3 hours after breakfast.  Today the epidural was removed. Dr. Vigneswaran and Dr. Gramm came in before lunch.  Said to discontinue oxygen as tolerated.  The chest tube will be rigged so Mom can go home; if not removed.  X-ray taken to see condition of lung without vacuum pump and oxygen. Appetite improving. Mom ate a full bowl of cream of broccoli soup and a few bites of Turkey ala King.  Drank some iced tea.

Nutritionist came in and said Mom’s diet should be such that she builds up her protein. She said at this point the important thing is just to eat what she’s hungry for. She needs a can of Boost or Ensure as a supplement. The IV was taken out because it was too loose. It’s needed only for antibiotics.

Dr. Vigneswaran said to leave it out. Dr. John and Dr. Barton (filling in for Dr. Swinnen) came in.  Said Mom should be able to go home soon for a day or two.  Dr. Barton said he wouldn’t make a definite statement since Dr. Swinnen will be back tomorrow, (Tues.), and he would have the final say.  He said patients who have been in the hospital so long get “cabin fever” and need to go home for the psychological benefits.  Said once she’s built up, she’ll start chemo.

Mom has developed a bedsore and needs a salve with a moisture barrier. Her catheter was removed at 4:30. She went for physical therapy from 2:00-3:15.  Tolerated it pretty well without oxygen. Still going without oxygen at suppertime. Ate well: a whole bowl of tomato/rice soup, mashed potatoes, corn and roast chicken breast.  Drank some tea and a small amount of milk. After sitting up for supper, a nurse took her down the hallway for a walk.

May 23

Nurse Vicki came at 6:00 P.M. to change the drain tube dressing.  Says wound area skin is in poor shape.  When the tube comes out, the hole may be sutured or left to heal from inside out.  The skin is too deteriorated to stitch.

May 24

Dr. Vigneswaran and Dr. Gramm were in early.  Nurse Vicki says Mom is going home on Thursday.  She could have gone today, but Mom didn’t have any street clothes and wants a hospital bed first. Today they adapted her drain tube.  Instead of draining into the collector tank, it’s now connected to a catheter bag.  We’re to keep track of the output and make sure the color stays clear; not murky/pussy.  Home Health is to come change her bandage. We’re to keep track of her temp. Mom going to therapy today; they’ll monitor her oxygen to see if she needs it at home. (Dr. Vigneswaran called last evening to say she needed it put back on.). She’ll have a chest X-ray at 10:00 in her room, as has been the practice.

As the X-ray people put Mom back to bed, her new hose came off.  We alerted the nurse and she used tie wraps to secure the hose at both ends of the “valve”.

Coming Home

Mom was able to go home today. Dr. Vigneswaran said Mom could have a bed after she told him she doesn’t sleep well lying down and still struggles to get up because of her hip surgeries. Nurse Vicki showed the girls (Julie and Vicki) the surgery area so they could watch for improvement and/or deterioration or infection; so we can tell Home Health nurses if it looks normal.

There is a small space at the lower side of the lung where the tube goes in that has not yet “come up”.  Dr. Vigneswaran decided to leave the tube in for 5 more days to give it a little additional time.  “When an organ is removed the body usually fills up the space by letting something expand.  Her lung hasn’t done that.”  This means the fluid is taking the place of air. Mom has an appointment next Tuesday to meet with Dr. Albain to see what’s next.

The Nurse showed the girls how to change Mom’s dressing.  Clean daily with saline; use peroxide only if necessary. Use gauze to clean the yeast away; wiping away from the wound, towards the breast.  Use the gauze one time and throw away.  Leave today’s dressing on 48 hours.  Do not remove for any reason.  Then dressing may be changed on Saturday evening.  The new bandage may be changed on Monday. The bandage for her wrist may be removed at home; away from hospital germs.

Appointment at Cardinal Bernardin Bldg at 10:15, Tuesday. 5/30/2000.  Be there on the 1^st floor 20 minutes early for a chest X-ray.  Take the films to Dr. Vigneswaran. Mike, from Apria, brought a portable E-Tank and showed us how to use it.  Gave us booklets on the portable as well as the home oxygen maker.  We’re to call Apria before we leave the hospital; so they can meet us at the house with the equipment. Dr. Vigneswaran needs to fill out a CMN (Cert. of Medical Necessity)  in order for Medicare to pay for the oxygen.

May 25 - Home at last!

Left hospital at 1:00 and got home at 3:00.  Mom tolerated the trip fairly well, came home with a portable E-tank.  Just outside of Seneca, Mom felt slightly nauseous; probably due to the fact she didn’t eat lunch before we left.  (She was in too much of a hurry to leave.  They brought her tray in just before Transport came to take her downstairs.)  She was feeling pretty weak; nearly fell 2 times coming from the car to the laundry room.

Today I sent an email to Dr. Vigneswaran and Dr. Swinnen with our unanswered questions.

Dr. Vigneswarren, Dr. Swinnen, and Staff

(Dr. Alvarez, Dr. Gramm, Nurse Vicki, and female Dr. who I apologize for not knowing her name)

For the past couple of weeks, my mother (Elsie DeWitt) was admitted at Loyola Hospital and was under your Team's direction for her recently diagnosed cancer. First and foremost, I would like to extend my entire family's gratitude and our heartfelt thanks for the very caring and professional treatment she received at Loyola. We can never thank you enough for the tremendous efforts you all put forward in granting her the special attention she needed and truly deserves.

No matter what her prognosis becomes, we can all take comfort in knowing she was looked at by the best! Please thank your entire Team from all of us.

I have a couple of questions that you may or may nor be able to respond to. Our mother is very important to all of us and we want her to have the best quality of life she can possibly have from here on out. We know the ultimate decision has to be hers and hers alone, but we need to know what options are going to be available.

When she was first diagnosed with Mesothelioma in CHO (Community Hospital of Ottawa), I was told by three different doctors that she had between 1-3 months to live. Two of them told me she was in her the final stages and had less than a month. Since then, we thought the new diagnosis suggested by Mayo and concurred by Loyola is Adenocarcenoma, not Mesothelioma.

1. Is the cancer in fact Adenocarcenoma? When oxygen was ordered for her "home stay", the type of cancer still shows Mesothelioma! Is this just a typo or does she in fact have Mesothelioma?

2. I realize she has an appointment next Tuesday to discuss chemo/options with Dr. Albain (sp??), but do we even know where the cancer originated (which gland, etc.)? Doesn't this determine which type of chemo is most effective?

3. What are the chances of getting her chest tube removed completely? If the leak does not seal completely, are you considering any additional steps other than the valve?

4. Will any additional biopsies be needed/done?

5. What is her prognosis now? I do International consulting and my mother's condition will greatly influence my employment choices (i.e.. how close I need to be to home ... should I be considering taking off indefinitely). This will also affect my brother and sister's decisions pertaining to their work. We would all be at her side every minute if we thought there was a need!

If you are unable to answer these questions, could you please point me in the direction of the appropriate person to talk to? I initially thought my mother needed to hear everything relating to her condition, but after going through the ups and downs this past month, I'm not sure that would be in her best interest. She certainly needs to determine the treatment (if any), but I'm not convinced she needs to be given a timeframe. But I think we all do!

As each member of the family sees something new on television, reads a cancer article in the paper, or is told about a new web site with new clinical trials, they immediately think "here's what will put Mom in remission". We've all been through cancer with other family members (our father included), but this is different. This is our Mom!!!

We need to know the facts and to once and for all get off the roller coaster. Naturally I want to hear that with the proper chemo/treatment, she could be with us for years. But deep down, I try to be realistic and I think that could only happen with Divine Intervention!

All we're asking is for an honest prognosis, and what can we do to make her as comfortable as possible? You've already taken the first step by sending her home. She was elated this morning prior to be leaving the hospital. Unfortunately, by the time she arrived home, she had carsickness and was extremely exhausted. Most importantly, she's where SHE wants to be!!!

Thank you Dr. Vigneswarren , Dr. Swinnen, and Team. We're forever grateful and indebted to all of you!

Cordially,

Barth P. Cunico, Jr.
Westminster, Colorado
303-438-7089

Chest Tube Removed - June 1

Today (June 1^st) we went back to Loyola for our first meeting with the Oncologist, Doctor Albain. Aside from her seemingly lack of compassion, she discussed Mom’s latest diagnosis. She explained it as a rare type of Adenocarcinoma and she was entertaining two types of chemo for treatment. This would be a combination of Paraplatin and Taxol given intravenously  (four hours) one day every three weeks. Other treatments such as designer drugs, gene therapy, immunotherapy, etc would not be considered for Mom. She said she is not a candidate for clinical trials.

The cancer itself was in the chest area as well as in the upper stomach peritoneum. When Dr. Albain found out that Mom still had her ovaries (after a hysterectomy), she wanted to do some blood work to eliminate ovarian cancer. If the cancer proved not to be ovarian, she would proceed with the lung cancer chemo we just discussed. She was very convinced that the origination of the cancer was the lung because there was no swelling in the abdominal area.

She explained the benefits and downside of chemotherapy. The benefits include:

• Possible shrinkage of cancer

• Added comfort

• Feeling better

• Possible increase in longevity

• Possible discontinuation of oxygen

• The negative effects could include:

• Hair loss

• Joint pains

• Vomiting

• May not be effective

She mentioned that some people simply choose not to do the chemo treatments. She told Mom that it was her choice, but she would very much like her to give it a try. And, if the treatments were not agreeable, they would be stopped at Mom’s request. Another good point is that Loyola has a doctor (Dr. Alex Hantel) who makes weekly visits to Ottawa.

We discussed Mom’s inability to have proper bowel movements. She’d been taking “Equate Stool Softener” but Dr. Albain said that wouldn’t do the trick by itself. She said she would need to take bulk/fiber in conjunction with the softener. So, once a day, she’ll take “Citrucel”.

We told her about Mom’s problems with controlling her bladder. Dr. Albain said it could be from the medication (pain pills) or she could have a bladder/urinary infection. Nurse Vicki had suggested the same, so a urine sample was taken.

During her exam of Mom, Dr. Albain mentioned the large patch of inflamed/puffy skin that was now on the right hand side of Mom’s back. She asked how long she’d been having problems with her back, and said it could possibly be air under the skin, but she was considering a bone scan. However, facilities weren’t available today to do the scan. She also noticed what could be the same condition in the breast.

In the afternoon appointment with Dr, Vigneswaran, the x-rays showed three quarters of her right lung were not inflated. The other area contained fluid. He told us that we could leave the tube in, but it would most likely have to stay in. Or, we could remove it and monitor how her body handled the surplus fluid. Mom chose to remove the chest tube.

Ovarian Test Results (Hopes up again)\

June 4

This morning I sent the email to Dr. Albain with a list of questions we were still looking for answers to. She called around and said she was in the midst of responding to my email but thought talking in person might be more appropriate. She thought our private discussion at the hospital had mended our wounds, but was very appreciative that I clarified everything in the email. To her credit, she agreed that her demeanor had lacked compassion.

She was looking more seriously into other possibilities for the origin of the cancer, and she now had results from the blood work taken on Thursday. Ovarian tumor markers are normally measured using the following table:

Mom’s ovarian tumor marker count was 264. Her breast counts were also higher than normal, but she said this could be caused by the high ovarian counts.

• Dr. Albain wants to schedule a meeting with Dr. Potkul who is a Gynecological Oncologist specializing in “Female Type” cancers.

•  She would also like to schedule:

1.      Deep pelvic exam

2.      They’d like to do their own mammogram and Pap Smear

3.      Ultrasound

4.      Bone Scan.

Dr. Albain called back later and said Mom definitely had a urinary infection. She prescribed an antibiotic (Cipro) for this.

I sent the following email to Dr. Albain today:

Dr. Albain (Kathy),

Firstly, please let me express my sincere appreciation for the fact that you talked with me personally after discussing my Mother's situation as a group! This is an extremely emotional time for all of us, and I myself am a very proud, professional person. I took offense to the fact that you made an unfounded assumption that everything I was asking was derived from the Internet. I pride myself as having the semblance of an intellectual person. I attribute that personal observation to my continual need to be educated, informed, and to have the ability to comprehend life's experiences. The questions I was prepared to ask were composed from numerous sources, and the majority were not my own. I can say that all of them were very heart felt and were in need of resolution.

I've allowed myself a chance to compose myself prior to sending this "heat seeker". Please don't be offended by what I hope to be constructive criticism. I'm merely offering it as food for thought for future encounters. During Mom's appointment, I was very disturbed with your mannerisms. I thought your people skills/professionalism were lacking and, as the grief stricken family dealing with a terminally ill patient, I thought you could have been more willing to "listen". Our questions and concerns should have been a little more important than the need for you to continue uninterrupted to keep your focus. In regards to the origination of Mom's cancer, we were again hearing a discrepancy between what we'd been told and the facts you were now providing to us.

I was immediately offended by your abruptness, and once that side of your personality surfaced, I was no longer receptive to anything you had to say. At that juncture, any remaining questions went un-asked. Our talk afterwards assured me that you really do have a "personal" side to your character! I'm cognizant of the need for you to maintain a professional focus with your patients, but being a little bit humane is a good trait as well. Sometimes it's good to know how others perceive us. I think it's especially important for those of us who deal with the general public to be aware of how we're perceived. Hopefully you'll take this input in the light it's intended.

We want the very best for Mom. Unfortunately, as a family, we've dealt with terminal cancer with other family members. I personally had the misfortune to go through the same anguish with both of my girlfriend's parents. Her mother passed away in a Hospice facility two months ago after a seven-month struggle. Her father went through three separate bouts/types of cancer in a 5-year period. He succumbed 4 years ago.

I'd like to offer a brief background on myself, so you don't feel you're speaking with someone who "needs to get a life other than the Web". I'm a highly touted International Telecommunications Consultant (retired after 29 years of Tier II and TIER III technical support with AT&T), who happens to have a GREAT deal of interest in my Mother's well being. She's a very special lady to all of us, and her quality of life and personal comfort are of the utmost importance to her entire family. We do realize what Mom's future holds, but there are those in the family who are still holding out hope for:

• Gene therapy

• Designer drugs (clinical trials)

• immunotherapy

•  radiation

• chemotherapy

• photodynamic therapy

•  Herbs/Natural Stuff

• .etc...

My purpose is to keep everyone focused on "What's best for Mom". Outside of "Divine Intervention", and a possible period of added comfort with chemo, I'm being as realistic with myself as I know I need to be!

During our visit, I was attempting to inform you that I sent an email to Dr. Vigneswaran and Dr. Swinnen with some of my questions. Unfortunately, I think you had the impression that I was trying to upstage you. That's the furthest thing from the truth Dr. Albain! I want Mom to have the best care possible, and it seems we've found that expertise in you. As a family, we've been on an emotional roller coaster. We've been given hope upon hope only to have those hopes extinguished. We've been told facts about Mom's condition that proved to be mis-stated.

You could have a tremendous impact on the mental health of my entire family by answering a few brief questions. Again, these are not simply my questions! I've personally come to terms with the situation, and the only unanswered question for me now is her "prognosis". As I mentioned in my email to the other doctors, I don't know in my heart whether or not Mom needs to be given a time period, but I personally do. I've spent most of the last month and a half here with Mom, and at some point, I need to make some career choices. My brothers and sisters have the same dilemma. Everyone's afraid to leave! We'll count on your professional opinion for future medical advice/education Kathy. That's why I asked who the expert on Mom's disease was.

• If the blood test for ovarian cancer is negative, and assuming the cancer may not have originated in the lung, will anything be done to determine the origination of the cancer?

I believe you already answered this question. On May 12th, Mom's diagnosis was changed from Mesothelioma to Adenocarcinoma. Dr. Gramm said this type of cancer normally involved the digestive tract, and they wanted to do an abdominal cat-scan. He came in later to tell us that the results showed cancer in her abdominal area. They were thinking about doing a biopsy from that region in an attempt to identify the origination of the cancer, but due to other circumstances, this procedure never took place. Samples of the fluid in her pump were sent to Cytology at this time.

And you were correct Dr. Albain, on the 13th, it was Dr. Alvarez who mentioned the 25 glands where the cancer could have originated. He described the cancerous area as the stomach/intestinal area. He also told us that the cancer was not believed to have originated in the lung. It was thought to have metastasized from one of those glands. The kidney and liver had been ruled out. He also told us that the various glands have uniquely different types of chemotherapy. Thus, the question asking if there were means to determine the origination of the cancer.

• If the ovaries don't prove to be the culprit, and theoretically, if the lung was not suspect, I believe you informed me that the only means of determining the source would be cutting her completely open, and you would not do this (nor would we want you to). In which case, your chemo treatment of choice would be the type used for lung cancer. Did I also hear you say that the type of chemo for ovarian cancer was the same as that for lung cancer, or did you say similar?

• Please ensure I have the specific name for Mom's cancer (Pseudomesotheliomatous Adenocarcinoma)

• What's the difference between fibrous elements composing tumors as opposed to epitheal elements (in layman's terms).

• Could you describe the upper stomach peritoneum? Physically, what area does this cover?

• What stage is Mom's cancer?

• If the puffy area on the right hand side of her back is not attributable to the air under her skin, when will the bone scan be performed?

• What is Mom's prognosis?

In your opinion, what is the average timeframe for her type of cancer, at it's current stage? And, in your experience, is it good or detrimental for the patient to know this information? We'd all love for Mom to be one of those miracles you discussed, but we need to be realistic too. I've asked her if she's made her peace and she says she has. Also, I think she understands the gravity of her situation, but sometimes she talks about getting better and it makes me wonder if she really does know.

You mentioned that Mom would not be a candidate for other treatment types. I think your terminology was that she would not be part of a clinical trial. Please entertain my brother's questions in regards to alternative options. I'll attempt to phrase them in a manner that will cover his concerns:

• Is it known that designer drugs, gene therapy, .etc, will not work for Mom?

• If true, what would the reasons be? (.i.e. - age, stage of cancer, area of metastisization, lack of benefit, discomfort, quality of life, not offered/available or hospital not certified to do such trials, .etc)

• If the origin of the cancer cannot be determined, why have these other options been ruled out?

Respectfully,

Barth P. Cunico, Jr.

June 5

Dr. Albain’s nurse called at 1430 with all of the appointment information.

June 6 - 1500 – Card. Bernadine - Mom will meet with Dr. Potkul in Clinic A.

June 8 - 1045 - Russo Bldg - mammogram

     “       1400 -         “          - Dr. Vigneswaren

     “       1430 -         “          - ultrasound

June 9   1045 -         “           - bone scan – this requires doing a contrast (inject dye).

I mentioned the concern they had with Mom’s kidneys when a brain scan was being considered, and the nurse said they have no choice in this matter.

June 6

To show our appreciation for the turnaround in Dr. Albain’s responsiveness to us, we took her a floral arrangement today. Then we met with Dr. Ronald Potkul and Dr. Laurie Small (his assistant) for a pelvic exam and Pap smear. Initially, Dr. Small took Mom’s medical history; making copies of her own notes on surgeries, dates, medications, etc.

Her weight today is 186 lbs, Height is 5’5”, Blood Pressure is 126/60, and Pulse is 120.

Dr. Potkul came in to tell us a few things before the exam.  He mentioned that he would be checking to see if the cancer started in the ovaries in which case it would be considered ovarian cancer – having mastisized to the peritoneal cavity, it would be then be referred to as “primary peritoneal adenocarcinoma”.

Prior to starting the exam, we discussed with Dr. Small our concerns about doing the bone scan with her elevated kidney counts. She informed us that the most recent stats showed her kidney counts back to a normal level. The CT showed a thickening, a spot in the top of the vagina, as well as enlarged ovaries. The ovaries were especially large for a woman who had already been through menopause. The CA125 tumor markers were markedly elevated which could indicate ovarian cancer. However, these counts could also be elevated for other types of tumors.

In either case (ovarian or lung cancer), he said the same chemo combination of Carboplatin and Taxol would be used. They’ve had good successes treating ovarian and peritoneum cancers with this combination, but he also said “We’ll treat what’s treatable”.

During the Pelvic exam, they checked Mom’s lungs, breasts, abdomen, vagina and rectum.  Mom said both breasts are tender, but the right one is more so.  This is the same breast that Dr. Albain said was enlarged when she did her exam the week before. At that time, she said it could possibly be due to air under the skin.

Dr. Small and Dr. Potkul did the exam, with a nurse attending.  As Dr. Small initially listened to her lungs, she got a puzzled look on her face.  We told her that Mom’s right lung is only 70% inflated; the other 30% is full of fluid.  She said she wasn’t aware of it and it was good to know.  As she and Dr. Potkul listened during the exam, they questioned whether or not anything had been done to the other lung.  We told them nothing had.  They spoke softly and said what sounded like, “There are decreased breath sounds”. Upon examination of the rectal area, he said there was too much stool to check very thoroughly.  At the end of the exam, Dr. Potkul said they wouldn’t consider operating.  That if she gets chemo, and if it helps and she’s strong enough; only then would surgery be an option to remove an ovary.

After the exam, Dr. Potkul said he really didn’t feel/find anything to confirm it was ovarian cancer. We asked what stage Mom’s cancer is at, and it’s Stage 4. He will wait until the bone scan results come back and then he and Dr. Albain will give us a treatment plan. They will review the results from the cat-scans, x-rays, bone scan, Pap smear, blood work, .etc. and they will contact us next week.

Received Response from Vigneswaran

Following is the reply to my email sent to Dr. Vigneswaran on May 25^th:

She has adenocarcinoma from our information and not mesothelioma.  Adenocarcinoma can arise from the pleura not necessarily came from somewhere else, that is a possibility.  I do not think that we should go looking for other places. The chemotherapy, which you will get more information from Dr Albain, will be the same if it came from somewhere else or from the lung/pleura.  I do not know the prognosis and no body can tell you either.  She has advanced disease but people can live some time with advanced disease.  Her deterioration will be slow and when she start to deteriorate you will know that you need to be closer to her at that time.

June 7

Not much to report. We sent email to Dr. Albain asking if the bone scan scheduled for Friday was absolutely necessary. Not only would three trips within a week be taxing, but also Mom was also a little nervous about the procedure to inject dye for the bone scan (contrasting).

Following is Dr. Albain’s response:

If she is not having bone pain, my vote is that we delete the bone scan....  it was only to follow-up her right shoulder blade area and if Dr. Vigneswaran agrees that is "leftover" trapped air (please ask him tomorrow), then let's skip the bone scan.  K.A.

June 8

Today at 1045 Mom’s mammogram had to be rescheduled. Although her wound from the chest tube is healing, it prohibited the procedure from being done. She was rescheduled for 6-28. Just an observation, she’s begun sneezing and coughing more than normal.

We met with Dr. Gramm prior to Dr. Vigneswaran. He pointed out that the chest x-rays showed increased fluid in her right lung. We told him about Mom’s fevers of late, as well as her high pulse rate. We also asked about her upper right shoulder area, which prompted Dr. Albain to suggest a bone scan. He said he’d like to give the antibiotic (for the bladder infection) time to run its course.

He said they weren’t concerned with her high pulse rate. And he didn’t think the shoulder area was caused by air, but didn’t think it was bone related either. Nurse Vicki suggested it was typical to experience such swelling from surgery itself.

At this time, we asked him if Mom can resume taking her arthritis medication when the Vicadin runs out.  If it doesn’t seem to be enough for the pain, they can order her something. Dr. Vigneswaran then looked at Mom.  He said the air leak is gone; also said there is an increase in fluid in the lung, but did not elaborate.  He said it is “collecting up; filling up space”.  He said the drainage will slowly settle down; maybe be done in two or three more days.

At that point, he checked her blood oxygen saturation level without her canula.  He said to discontinue use while just sitting; to use it when active and also to sleep.  Keep it at level 2.  We are to set up an appointment with him on June 22.  At this time, get a chest X-ray prior to seeing him.  He will let us know whether or not to keep the June 28 appointment for a mammogram.

Nurse Vicki said once we change over to Dr. Albain (this will happen when Dr. Vigneswaran is satisfied that her surgery area is healed sufficiently), she would be the one who orders Mom’s prescriptions.

Back Down Again -not ovarian after all

June 9

Today was just a bad day all around. Probably the best way to start the notes would be our email to Dr. Vigneswaran and Dr. Albain. The email also discusses an incident that occurred last night (the 8^th).

Dr. Vigneswaran or Dr. Albain,

Upon our return from Loyola on Thursday, June 8, we have experienced what we feel are some noteworthy complications:

• Mom began running a fever of 101 degrees at 9:21 P.M. 

• Blood Pressure 122/98

• Pulse 128

•  Experienced difficulty breathing immediately upon sitting up (Lasting about 10 min.)

• Face/ears became very flush

• Had chills

Home Health was contacted at this time.  The nurse came to the house, checked vitals and called Loyola.  She spoke to Dr. Parvatchani (on-call Loyola). 

He suggested taking Mom to the ER.  The mere mention of "hospital" caused Mom to panic. At this point, the nurse said that other than the fever, the pulse is normal for Mom.  She suggested we monitor Mom throughout the night and to take her to the ER if the temp, should it go up again. At 10:15 it was down to 100.4 degrees. She also said we should call her physician in the morning if problems continued.

On Friday, June 9 we again ran into difficulty with her breathing.  After being put on a bed pan (at which time her bed was lowered so she was nearly flat) she sat up. When she stood to walk to the toilet she again experienced shortness of breath.  She panicked at this time, color drained from her face, and she was in distress for several minutes.   She nearly ran into the kitchen at this time, trying to sit in an upright position. We took her blood pressure and pulse at this time.  Blood Pressure was 151/135; Pulse 90. Once again, Mom was fearful we would call a doctor or seek medical attention. She's extremely fearful of being re-admitted.

Approximately 10 minutes later, her Blood Pressure was down 140/55; Pulse 111.

• Is this something we can expect to be a regular occurrence?

• We're under the assumption this could be a result of the increased fluid level in her lung.  Is this a correct assumption?

• What do you suggest we do in these situations? (in particular, after hours or on weekends)

When she lies down, her bed is semi-reclined.  Both incidences seem to have been when she went from a nearly flat position to an upright or standing position.  Can she do this too quickly?  Do we need to let her "settle" before standing?  We're at a loss. Could this be caused by medication?  The nurse asked if a culture and sensitivity test was done to determine the correct antibiotic for the UT infection.

Dr. Albain, as Mom's future primary physician, we thought you'd want to be included on this email. We realize the proper protocol would be to go through "Home Care", but in this particular situation, we're hoping admitting her back into the hospital isn't the only option. We know you'll be unavailable for the weekend, but we're hoping if you receive this email prior to leaving, you'll alert Dr. Vigneswaran to her complications. Otherwise, if we encounter additional problems, we'll call Home Care once again.

If either of you are available today (Friday), we'd really appreciate a call or response to this email.

Phone:  (815)357-8670  Ask for Barth or Vicki

Thanks much in advance!!!

Cordially,

The DeWitt Family

We received email from Dr. Albain at the same time we sent ours, and she asked if we’d be available for a conference call to discuss Mom’s treatment options:

Barth, Will you all be available to take a call from me sometime between 4:30 and 6 pm... I will try very hard to reach you before I go out of town to talk about the "game plan".  (I am assuming she did NOT go for bone scan.). What number should I call?  Thank you.  Kathy Albain

Now we patiently awaited Dr. Albain’s call.

At 1415, while Mom was napping, we noticed that her breathing was extremely fast. We woke her to check her pulse and it was 95. After taking her pulse, she went back to sleep.

At 1530, we noticed her cheeks were flush again. She awoke when we entered the bedroom so we felt her and her hands and forehead were very warm. We took her temp with a manual (analog?) thermometer and it read 102.8. We then used a digital (in the ear) and it was 39.4 Celsius (102.9) the 1^st time and 39.2 (102.5) the 2^nd time. We gave her two ibuprofen and waited 10 minutes. We took her temp again with the analog thermometer and it was 103. We then called the “home health” nurse (Michelle).

She said it would take 45 minutes to an hour for the ibuprofen to affect the fever. I told her about giving Mom Milk of Magnesia in combination with the Cipro and asked if that could cause ill effects. She said she’d never heard of any repercussions from such a combo, but would check. She was going to call Dr. Vigneswaran’s office to see what they want to do. I told her we’d keep taking temperatures and monitor her for changes.

At 1620 her pulse rate was 136. Blood pressure was 148/82. Her temp was now 101.4.

At 1710, her temp was 100, pulse was 106, and blood pressure was 126/63.

At 1730, her temp was 99.8.

At 1800, her temp was 98.6.

At 1801, Dr. Albain called to discuss the “game plan” She asked for Mom to be included in the conversation. She received our email and discussed the content with Dr. Vigneswaran. They requested Mom to be at Loyola’s emergency room early tomorrow morning for some additional testing to find the cause of the fever. Dr. Vigneswaran would like his answering service to be paged when we’re ready to leave home. We also need to let the emergency room know we’re coming for a CBC (Complete Blood Count). She said to be sure to inform them that Mom has been running a fever and has an infection, so we need a “complete check”. Dr. Vigneswaran will review the results.

Dr. Albain asked Mom how she’s feeling “right now”. Naturally, she said “I was short of breath this morning, but I’m fine right now”. The doctors feel like Mom might have a 2^nd infection in the space in her right lung created by it not inflating completely. They’re interested in the total white blood cell count, which was 7000 on their last test. This count will tell them the status of any infections.

In regards to the cancer treatment itself, Dr. Albain does not want to start chemo with the fever being a mystery. Her words were, “We don’t want t o start something with something else brewing”. Her immune system is already down, and the chemo would take it even lower.

HOWEVER, she also said, “We need to start before it’s too late”. She discussed the ultrasound results with Dr. Potkul. Mom’s cancer is adenocarcinoma involving the lining all of the way from the lower pelvis to the lung. It’s not ovarian! The most effective treatment will still be the combination of Carboplatin (Paraplatin) and Taxol. She’s hoping to get the fever under control so the chemo can be started at the beginning of next week. She’ll contact us when they’re ready to start.

At 1830, her temp was 99.8 again. She had deferred pain medication (Vicadin) all day, thinking she was down to the last two pills. She actually had a full day’s worth, so she took two at this time.

Earlier today, in a moment of despair, Mom told Aunt Ruth she didn’t think it would be too long now!

Admitted a Second Time

June 10

This morning Mom was actually looking pretty good.  Other than being noticeably short of breath from her walk to the counter for breakfast, she had good color, wasn’t running a fever, and was in good spirits. She’s always tired now, so that’s not worth mentioning. She was quite beautiful.

We took her back to Loyola for the CBC (Complete Blood Count) tests. We anticipated a short visit, but the doctors had different plans. We learned an important lesson in hospital protocol. Always have an “order” (paperwork) called in by the doctor’s office prior to arriving at the hospital. We were given explicit instructions by Dr. Albain, and passed them on to the ER administration folks. After an hour of being misdirected, we finally got Mom to the appropriate location.

They drew blood for the CBC testing.  The nurse who drew the blood also put an IV needle in (he said “just in case the doctor needs it”).  The vein he put the IV needle in didn’t produce any blood; but he left it in just for IV administration. When he tried to find a vein in her right arm the only good place he found was on top of her right hand.  He took 5 or 6 vials of blood, but it came very slowly.  They also took urine to be tested.

One of Dr. Vigneswaran’s staff (Dr. Parvatchani) came into the ER cubicle where Mom was waiting patiently for the blood work to be examined, and said she was going to be admitted. Mom got that expression that melts all of her kids (her infamous puppy dog pout), as reality set in. He said Mom’s white cell count, which had been 7000+ on June 1, is now 16,300. It sounded like both Dr. Vigneswaran and Dr. Albain were already in agreement about the need to admit her. At first, she felt like she had been deceived. Her only request prior to agreeing to go back to Loyola was that she not be admitted. And most of all, she dreaded the idea of having a chest tube back in! We tried to comfort her, reassuring her that with a 103-degree temperature, she needed more care than the five of us could provide. She reluctantly agreed.

The admitting doctor (Brandon Lu) examined Mom, and went through her medical history. Another ER M.D. (Dr. J. Demopolous) also looked in on Mom. She mentioned that the pleural fluid taken from Mom’s surgery had produced bacterial cultures. She had two types of staphylococcus (coagulase and osteomyelitis??).  This is confusion factor for us. Mom had a fever following her surgery. At that time, the doctors examined her fluid to determine whether or not an infection was in the lung area. We were told there was no infection originating in the chest cavity, so rather than doing further investigation, they decided to treat her with antibiotics. Then, during our first visit with Dr. Albain, a urine specimen showed a UT infection, which she treated with Cipro. Now we’re hearing that her current infection is in the lung area. Are the original bacterial cultures taken from surgery and her current infection one and the same?

Dr. Demopolous explained to us that the staphylococcus is not very responsive to antibiotics. She said they would administer a more potent antibiotic called Vancomycin. She also said the UT infection she was being treated for with Cipro, was from E-coli type bacteria. She explained that the white area on her lung X-rays didn’t signify pneumonia, as would usually be the case, are a result of the surgery.

The Chief Admitting Physician (Daniel Dilling) then came in and Dr. Lu took the time to brief him on his discussions with us. Once he was updated, he listened to her lungs and both of them spent a lot of time examining/probing her back. He removed her dressing and examined her surgical incision area. He asked if she was still experiencing drainage. At this point she became notably alarmed and made it very clear that she did NOT want a tube put back in! He said he couldn’t promise that, and asked her what talks had been done to discuss treatment from here on out. He discussed “worst case” scenarios such as having complete respiratory failure or cardiac arrest. He said right now they’re planning on treating her aggressively, which would include inserting another chest tube or putting her on a ventilator if needed. She vehemently informed us that she did not want another tube.

She got that “distant” look on her face when he began discussing this topic. It’s that look that she’s hearing what he’s saying, but she really doesn’t want to hear it. We told him we would discuss this issue with Mom in private, and come to an agreement as a family.

We talked with him outside Mom’s presence and asked if they were seeing something that would suggest there were problems with her “good” lung. We told him about the statement Dr. Potkul made about decreased breath in her left lung. He said there was no indication of fluid in the other lung, but it did appear a nodule had developed at the top of it.

He said the fluid in her right lung could be the reason she was having difficulty breathing, and it could require draining to improve her condition. He also suggested the antibiotic for her infection might be more effective if the lung were drained. We asked if it could be drained using a syringe and he said probably not. The lung would probably fill back up right away. A nurse then administered the antibiotic intravenously prior to admitting her to the 6^th floor, Room 6400.

June 11

A remarkable woman

Mom is quite a remarkable woman, especially the way she’s handling this whole ordeal! You would think with a life threatening illness she would have more pressing issues to deal with than worrying about basketball.

She was all up in arms, explaining to the aid (who brought her food every day - Gregory), about how the Bull’s Management treated Phil Jackson. This year Phil had brought the Lakers to the finals, and she wanted Phil to show the “2 Jerry’s” what a great coach he really is. Lesson learned …don’t ever badmouth Mom and Ruth’s Bulls! She never has forgiven Larry Bird or Nick’s coach Jeff Van Gundy for speaking badly about Michael.

The doctors, nurses, aids, techs, and entire staff at Loyola absolutely love Mom. She’s been on VIP status since her first arrival (Thanks to Dianne).

Today when we first arrived, Mom said she had run a fever during the night, but she wasn’t sure how high it had been. She also said she had difficulty breathing when she had to get from her bed to the commode (which was right next to her bed). The type of antibiotic she was now receiving was not vancomycin. Instead, they were giving her ceftrioxone. We asked about this change and the nurse said they were told to rotate between the two antibiotics every 24 hours.

Dr. Vigneswaran and Dr. Gramm came in around 0945 and Dr. Vignaswaran said he suspects her space had become infected. When they refer to her space, they’re talking about the area that’s now filled with fluid due to her right lung not completely inflating. He discussed inserting a small tube, with a bag attached, to facilitate drainage. Once he mentioned the tube, Mom said, “You know I didn’t want to come back”. Dr. Vigneswaran replied, “I know. It took us two days to get you here”.

He had initially been informed that Mom was running a continuous fever, but as he now reviewed her charts, he saw that it had been decreasing since midnight. He then said we should give the antibiotics a 24-48 hour period to run their course. If the area is in fact infected, he said chemo treatments would be questionable at this time. He also said the space will always be a potential problem and susceptible to infection. He said there’s a slight chance that the chemotherapist would allow treatments to begin while the tube was in. Dr. Vigneswaran also noted the following items:

• Her temp was 100.7 at midnight

• Her lung is dry in the x-rays

• Drainage is due to the procedure done in surgery

• Don’t worry about the color of the fluid

• If a tube is inserted, it will definitely become infected

•  She will stay in the hospital until her fever comes down

We’ll discuss things such as inserting the tube later, right now the infection is the number one priority.

Both doctors then did a physical exam, which caused her noticeable pain and discomfort when they pressed on her incision area. Since our medical credentials are slightly less impressive than the Loyola staff, we’re having difficulty understanding some things. We then asked Dr. Vigneswaran to explain something to us. We laid the following groundwork:

• When Mom was first taken to CHO, it was due to shortness of breath and exhaustion. She couldn’t perform the most basic house chores without a need to sit down.

• Once she was admitted to CHO, it took the next month and a half to get her back to the point where she was prior to Ottawa.

• Loyola had patched the hole in the lung that CHO created during her intervention work procedures.

• They also cured the leak created when CHO’s chest surgeon (Joh) replaced her chest tube.

• Our expertise, as recent graduates of the Cunico School of medicine, was derived from:

• Reading medical books supplied by Bonnie

• Searching the Internet

• Researching at Barnes & Noble

• Prior family experiences with Cancer

With this background, we couldn’t comprehend what had been done during all of this time to improve Mom’s ability to breathe. Dr. Vigneswaren explained why they expected an improvement, but his broken English confused us even more. Once we had time to absorb everything that had been said, a light finally came on.

The surgical procedure to seal the air leak and remove some of the cancer mass (right thoracotomy, pleurodesis), should have improved her breathing capacity. The talc was not only intended to patch up the air leak, but it also made the lung reattach to the lung lining. The cancer had created a gap between the two, and that space was then filled with fluid created from the cancer’s irritation. The surgery and talc eliminated the space and the only place fluid should be collecting now is the area where the right lung isn’t inflated.

At 1000 Dr. Kenneth Micetich (Dr. Albain’s staff) came in. He discussed the following:

• There was some mucus in the drainage.

• He agreed that the main issue is getting the infection under control. He said the shortness of breath was a concern too, but not at the top of their list.

• They don’t want to be moving Mom up and down the hospital looking for things that may not help us.

• Chemo could help if there’s a good response.

Mom developed a fever back on May 15th, and she was placed on antibiotics. She was delusional on the 16^th, and on the 17^th, Dr. Swinnen informed us that she did in fact have an infection in her chest. Surgery would need to be done to clean this area up. So now she has two types of bacteria. (staphococcus & enterococcus).

When everyone left the room, Mom told Vicki, “I’m scared of all of this”.

Dr. Gancayco was the last physician to see Mom. When she entered the room with a nurse, the nurse was asking her if they’d be putting a tube back in. The doctor said, “Not today”. The doctor then had the nurse take a sample of the fluid drainage.

Mom’s vitals around 1600 were:

• Blood pressure 127/62

• Pulse 103

• Temp 99.7

• O2 level 93

Yesterday we asked the emergency room doctors about using a mask for Mom’s oxygen. They said by using the tubes (her current means of delivery - cannula), she was receiving approximately 40% of the oxygen. On the other hand, using a mask, she would be receiving 100% of the oxygen. This would only be good in an emergency situation! Changing from the cannula to the mask would be like changing her level knob on the tank from 2 to 4 and she’s only been prescribed 2.

June 12

When we arrived this morning, Dr. Gancayco and her assistant had already looked at Mom. Some blood work was also done prior to our arrival. The doctor left when breakfast was brought in. Mom started coughing and sneezing and suddenly couldn’t breathe. The nurse noticed her panicking and called the doctor back. Dr. Gancayco ordered a mask from the respiratory people along with an EKG, a chest x-ray, and additional blood work. By the time we entered the room, the mask had her breathing more comfortably. Her temperature was 99, but her oxygen level had been 84. The oxygen level was set at 12.

At 1000 Dr. Gancayco, Dr. Micetich, and Dr. Tubin came in to check on Mom. They looked at her and said they wanted to talk with Dr. Vigneswaran first, but they thought he still wanted to complete 24 more hours of antibiotics before proceeding. They removed her mask and her O2 level dropped back to 84. When they returned the mask, it immediately went back up to 93. They ordered a CT to look at her blood vessels in her chest area and asked if she was allergic to contrast. We explained the reluctance to use the dye for her brain scan, but that was only due to her high kidney counts. They said those counts were normal now, so they scheduled a CT with contrast. We asked Dr. Gancayco if she knew what type of test (x-ray or CT) showed a nodule on Mom’s good lung. She said she’d find out.

At 1045, Dr. Vigneswaran, Dr. Gramm, and Nurse Vicki arrived. He told Mom that the antibiotics were doing their job and his work was almost complete. In other words, there would be no need for a chest tube. Mom was elated and gave her infamous thumbs up signal. He said if things continue to improve, Dr. Albain would be starting treatment soon.

In regards to her breathing difficulties, he said the other team of doctors was investigating. He said the CT would be used to look for blood clots. He explained that when you’ve been in a hospital as long as Mom has, with all of the surgery, etc., things happen. Things go wrong and this can be expected. But, he reiterated, the antibiotics are working.

1200 - O2 level was 96.

1225 – Transport came to take Mom for her CT. Her breathing was extremely labored getting onto her gurney. They used a step stool and had to turn up the oxygen level to 8.

1610 – She returned from her CT. She reported that they were unable to inject the contrast via the 2^nd port on her IV, so they had to insert yet another needle.

1613 – Her vitals were:

• O2 98

• Temp 99.4

• BP 150/69

• Pulse 120

• 1645 – Jean (Nurse) came in to give Mom her vicadin and to announce that she had orders to:

• draw blood prior to hooking up a new antibiotic

• deliver the antibiotic through an IV (this takes 1 hr.)

• wait 1 hour after the IV completes

• draw blood again

By now, Mom’s arms were once again taking on the look of pincushions. Dr. Tubin returned at this time, and said they felt they had found the cause of Mom’s breathing difficulties. The CT showed a pulmonary embolism in the lower lobe of the left lung (her good lung). He said it probably originated in the lower leg (either one) and it traveled to her lung. They would administer a blood thinner (heparin) to break up/dissolve the clot. The reason they suspect it started in one of her legs is because it takes time to form and the legs allow this formation to take place. We asked him if he knew the source of the statement by Dr. Dilling that a nodule showing up in Mom’s left lung. He said he’d check into it.

When Jean returned, we asked if she’d been told about the heparin drip, and she had not. But by the time she returned to draw the blood after the antibiotic finished, she had an order for it. The downside of the blood thinner was that Mom’s blood needed to be monitored very closely during its administration. They would have to draw blood every four hours.

During this period, Mom began itching where the nurses in CT put tape for the contrast IV. She quickly developed a red rash on the underside of her arm. They had used silk tape, which Mom has proven to be extremely allergic to. Early in her illness, silk tape had caused an entire layer of skin to come off when removing the tape. Jean was aware of her allergy and immediately replaced the tape.

I received email from Dr. Albain tonight suggesting they’ll start in-house chemo treatments (at Loyola) prior to releasing her. Following is that email:

From: Kathy Albain <kalbain@wpo.it.luc.edu>

To: <bcunico@worldnet.att.net>

Sent: Monday, June 12, 2000 5:51 PM

Subject: Re: Your Call 

Dear Barth and family

I just am back to my computer after being out of town.  I have spoken with my partners who brought me up to date (Dr. Gaynor and Dr. Micetich) - sorry she had to be readmitted.  If things go according to plan, we will do her chemotherapy as an inpatient to "get things moving along faster".  I have provided the doses to Dr. Micetich.  I am leaving again to the National Cancer Institute and will be back Friday.  Please give my regards to your mother and assure her of my prayers.  Note if all goes well, this chemo can be easily continued as an outpatient. (It is given every 3 weeks as we discussed.).  Kathy Albain

June 13

Mom was not in her room when we arrived today. She had been taken to have tests done to see if there were any more blood clots in her legs. She returned at 1030 and is no longer wearing a mask. She uses the cannula with an oxygen output level of 5. Her mouth is starting to get inflamed/infected as a result of the fever, so they prescribed nistatin (for thrush). The blood coagulation reading from the lab is 36.4. They said they like for this count to be below 45, so we didn’t understand when they said she needed a 3000cc booster shot of neparin in her IV??

Prior to our arrival, Dr. Gancayco and Dr. Tubin had examined her (mainly listening to her breathing).

At 1215, the nurse said she would start receiving a new anti-coagulant in the evening (coumadin). She was also being switched from her two previous antibiotics (Vancomycin and ceftrioxone) to a new type (nafcillin). The nafcillin will be given every 4 hours.

At 1410, Dr. Micetich, Dr. Gancayco, and Dr. Tubin arrived. They did a quick exam and asked Mom if she was ready to start chemo. Dr. Micetich quickly discussed the two types of chemo (Paraplatin and Taxol) Dr. Albain was prescribing. The possible effects are:

• Hair loss

• Shrinkage of cancerous tumors in 3-4 out of 10 patients

• Good drugs accompanying the chemo would lessen the chance of nausea/vomiting

• Mildly anemic

• Risk of infection

• Numbness in lower extremities

• Joint/bone aches

Mom said, “Let’s do it!” Treatments will begin tomorrow.

We asked why they had switched antibiotics, especially when they’d had such good results with the two she’s been receiving. He said some antibiotics are more sensitive to different cultures. They’re going by lab results. He said her fever has gone away, and as long as she’s not running a temperature, they’ll keep her on the nafcillin. We asked what we should consider a fever for future reference and he said anything over 100.5.

I asked Dr. Gancayco and Dr. Tubin if they’d found out any additional information on the nodule on Mom’s “good” lung (reported in Dr. Dilling –ER - June 10). Dr. Gancayco had not checked yet, but would do so now.

1525 – Vitals were:

• BP – 110/49

• O2 – 98

• Pulse – 101

At 1540, Gr. Gancayco returned and she verified the x-rays and CT’s and saw no evidence of anything other than the embolism on the left lung!

1620 – Weight was 186; height was now 5’4”. We’re not sure how accurate the 20 lb. weight loss was reported in the early days of Loyola?? The only difference is she’s without the pump now, and fluid is being retained in her body.

1630 – The nurse (Jean) said her blood pressure had been low, so she wanted to check it manually. The Oxygen level was 97 but she needed to get different equipment to do a manual BP reading. We asked if she new her white blood cell count and she was going to check.

1655 – BP was 112/64. She forgot about cell count.

1715 – White blood cell count was 10,200. We asked if the chemo start time was on her charts, and she said it was up to the nurses. She said it would probably be afternoon.

June 14,

Dr. Vigneswaran and Nurse Vicki were in to see Mom prior to 0900 and Mom was too groggy to pay attention. They did tell her that she would be starting chemo today we were given pamphlets explaining the two types of chemo Mom was being treated with.

Paclitaxel (Taxol)

The length of treatment depends on how a patient responds and what their physical condition is. Possible side effects are:

• Decreased number of blood cells

  • White - fight infection

  •  Red – carry oxygen

  • Platelets - help blood clotting and promote wound healing.

• Hair Loss

• Muscle Aches

• Bone Pain

• Flu Like Conditions

• Loss of Appetite

• Nausea/Vomiting

• Hypersensitivity

  • Shortness of breath

  • Facial flushing

  • Chest pain

  • Low blood pressure

  • Skin rash

  • Hives

With this drug, the doctor should be notified immediately for:

• Diarrhea

• Mouth sores

• Severe vomiting

• Fever

• Chills

• Change in bowel

• Cough/sore throat

• Difficulty swallowing

• Bruising

• Unusual bleeding

• Exhaustion

•  Dizziness

Carboplatin

This drug may cause:

• sores in the lining of the mouth

• redness/irritation of sores

A doctor should be notified for:

• numbness/tingling of fingers/toes

• blurred vision

• ringing in ears

• black or tarry stools

0945 – A nurse tried drawing blood but had a dry vein, so a tech came in and didn’t have a problem.

We asked about Mom’s white blood cell count and on the last reading it was 8000+.

Nurse Sally mentioned that Dr. Vigneswaran would be signing off as primary care physician (she doesn’t need him any more). She began pre-meds at 1100 for the chemo:

• Zantac (antihistamine)

• Dexamethasone - aka Decadron (steroid/anti-inflamatory ..helps nausea)

• Benadryl (antihistamine)

This was supposed to be 15 minutes total, but took from 1055 until 1130.

Taxol was started at 1158. They monitored every 15 minutes for the first hour, looking for an allergic reaction or signs of hypersensitivity. This took 3 hours to administer.

At 1255, Mom did have a 100.4 temperature.

1300 - Nurse Theresa had to change out one of Mom’s IV’s because it was feeling “hard”.

1410 – Temp was back to normal. They gave her Zofran at this time. It’s a pill for anti-nausea. Dr. Micetich came in around this time and told Mom they were starting paperwork to dismiss her. They also took the colostomy bag off and replaced it with a dressing.

1500 - Carboplatin was started and completed at 1600. They monitored fluid levels for this drug. The concern was kidney damage.

2030 – Mom choked on something and needed aid to regain control of her breathing. Her neighbor in the adjoining bed called for help since Julie had gone to the cafeteria. When Buggie returned, everything was back to normal. It was a scare for Mom.

Mike’s Info:

Regarding the "blood thinner test"; the test is called a PT/INR-PTT. The number they are referring to right now is the PTT portion of the test. I believe "Normal" (for those folks not getting heparin) is like 15 to 20. When treating some one for a Pulmonary Embolism (PE), they usually shoot to raise that  15 - 20 to a level 2 to 2 1/2 times normal. So they are trying to get the PTT up to 40 to 50.

They will continue to draw the PT/INR-PTTs once they start her on coumadin. However, the result they will be looking at will be the PT/INR portion of the test. They will adjust her coumadin dosing based on the INR portion of the test.  Normal (no coumadin) is 1-1.5. They will probably try to get that up to 2 - 2.5. I am wandering a little bit from my area of expertise here, but I think that I am correct with these lab values. Once they find an appropriate dose of coumadin (this may take a couple of days to a week or so to find the correct dose for her), they will take her off of the heparin.

That they have removed the O2 Mask and put her back on a cannula, is a good sign. For you edification, the O2 levels with the cannula (2,3, 4, or 5) equals Liters per minute of O2.

Regarding the change of antibiotics; when the cultures grow out positive for specific bacteria, they (the lab) will determine which specific antibiotic is most effective against that particular bug.  Vancomycin and Ceftrioxone treat a wide spectrum of bugs effectively, but Nafcillan will be more specific to the bugs that your Mom is growing, this will leave her more receptive to using wide spectrum antibiotics at a later time if she should need them.

June 15

Prior to our arrival, Dr. Gancayco and Dr. Tubin told Mom she’d be releasable once the blood thinner counts were under control.

1015 – We talked to Dr. Potkul and Dr. Small in the hall, and they inquired about Mom. They told us the fatigue from the chemo usually set in after a week. We can expect hair loss about three weeks after the chemo starts.

1030 – We asked the nurse about white blood cell counts and they were 10,000.

1045 – Physical therapy checked Mom’s walking capabilities. She did pretty well, but was a little short of breath after going about 50 feet.

They asked if she thought she needed to remain in the hospital a few extra days to strengthen her stamina (doing physical therapy) and I’ll let you guess at her answer (she wanted to be at 245 S. Oak Street in Seneca).

1240 – started potassium with a booster drink. She’ll receive additional potassium for 6 hours via the IV. The nurse (Oriental) said today was the last day for intravenous antibiotics. Starting tonight, she’ll take them orally.

1530 – Dr. Micetich and Dr. Gancayco tried to be cute with Mom and told her they were working on getting her out for Labor Day. With her “selective hearing”, Mom replied, “When am I going home?” They said in the morning, or at the latest, early afternoon. She’d been experiencing bladder control problems, and they wanted to look into this a little further. With her track record (high kidney counts, etc), we need to follow up on this. 

Today, we discussed a Sinead O’Connor cut once Mom’s hair starts falling out.

Email to Michael Jordan - June 16

I sent email to Michael Jordan’s official Web Site last night:

Michael,

I'm writing for my mother, who is currently undergoing chemotherapy for pseudomesothelomatous adenocarcenoma" at Loyola University Hospital. She found out she had cancer immediately following her 70th birthday. She and her sister (72) are the two biggest, and most devoted Michael Jordan/Phil Jackson fans alive. She often says, I used to think I was a Bulls fan, but I found out I'm really a Michael fan. We've been writing a daily journal about her fight against cancer, and the entries are often about her conversations with hospital personnel about the Bulls.

She was initially given a prognosis of 1-3 months (in April), but she's still fighting. A memo, signature, or anything pertaining to yourself would be a dream come true. Usually dreams are submitted by young children, but this is one mature woman who thinks the world revolves around you. She'll be coming home to her house at 245 S. Oak Street, Seneca Illinois (65 miles from Chicago) tomorrow. Her phone # is 815-357-8670, and her name is Elsie DeWitt.

Thank you so much!!!

Elsie's youngest son - Barth

Today (Saturday), Mom would be coming home once again. However, when we arrived at the hospital, her coumadin levels were not as thin as yesterday. They were attempting to bring the levels back down.

1020 – Dr. Gancayco asked if the hospital in Streator would be convenient for testing Mom’s blood once home care no longer provided that service. It seems CHO is not set up with a coumadin test lab, but Loyola (Dr. Albain) works with Streator. Dr. Manigold will make the arrangements for blood work; it will FAX results to Dr. Albain’s office.

1130 – Dr. Gancayco came back and said she’d be stopping the premarin prescription for a while.

1440 – Mom was released from Loyola for a second time.

June 17

Home Health nurse MaryAnn came today and changed Mom’s dressing.  She also drew blood to check Mom’s coumadin level.  She called back late in the afternoon to tell us dr. Manigold’s associate, Dr. Steinert said to give Mom 4 tablets, 2.5 milligrams each (10 milligrams in all) tonight and tomorrow night.  The levels will be checked again on Monday.

June 18

Changed Mom’s dressing today.  The fluid was mostly pink, not the usual brownish. Noticed a rash in her left groin area; probably due to skin temperature; not an allergic reaction to any medication.  Put cornstarch on it to help keep it dry.

After sitting up for a few minutes in the late afternoon, Mom became nauseous and spit up.  She’d just eaten a bite of asparagus, which may have been too rich for her.  She threw up approximately ½ cup total; mostly phlegm and watery fluid with pieces of onion from lunch and the asparagus she’d just eaten.  We checked her temperature and she didn’t register a fever.  Her coloring looked good, as well.  At this point she removed her teeth and went back to bed.

We sent Dr. Albain the following email today in an attempt to get future office visits/checkups scheduled:

Dr. Albain,

Mom is doing great. She was nauseous yesterday, but otherwise has just been tired. Home Care is tracking her blood work as was arranged.

Dr. Vigneswaran had initially asked to see Mom prior to having a mammogram done. She's still draining from her incision, so I'm not sure if a mammogram could be done at this time anyway.

Out of curiosity, could you answer a question for me? While in the hospital this last week, the nurses decided to use a colostomy bag to trap the drainage. She said another nurse had stumbled on this technique with a prior patient, and it eliminated a need to continually change dressings. Once the bag was in place, it was never emptied. Could this have slowed down the healing process, or with a wound healing from the inside out, would it be a moot point?

She currently has an appointment with you on June 26th and was supposed to see Dr. Vigneswaran the 28th. One of the nurses on the 6th floor (Sally) said Dr. Vigneswaran "signed off" on Mom, and she is now in your care. Will the appointment with Dr. Vigneswaran be necessary, and will the mammogram still be required?

Thanks Dr. Albain!

Cordially,

Barth

The home care physical therapist visited this afternoon for an initial evaluation. His only concern was her blood pressure (100/50). We also received the following reply from Dr. Albain:

Barth,

Good to hear from you, and glad she is doing better.  The mammogram can be postponed; Dr. Vigneswaran needs to continue to see her until the tube drainage has stopped.  I don’t believe attaching the bag externally affects healing.  At this point, please watch for fever and let me know (hope not!!!).  If she is nauseated, please call my nurse Lisa Howard to help with that (708-327-3214).  She should be able to take nausea medications regularly to control this. K.A.

June 19

Fluid from chest tube area is pink, not brownish at all. Could be due to coumadin??

BP:100/50 (done by PY Roger)

The CAN gave Mom a shower today. She tolerated very well, but worried about her bandage getting wet. She’s still in charge!

Coumadin levels were 10 mg Monday and Tuesday – will draw blood again on 6-21.

Jun 20

• BP: 100/50 when CAN (Leslie took it)

1512 - while sitting up at the snack bar, she began feeling dizzy (seeing white spots), but wasn’t nauseous. Took Vitals:

• BP: 84/70

• Pulse: 117

1515 - After walking back to bedroom and lying down, vitals were:

• BP: 111/47

• Pulse: 123

1723 – No dizziness while lying

• BP: 109/50

• Pulse: 117

1730 – Napping

2000 – Changed dressing – drainage fluid still pink.

2015 - Appetite good

June 21

Restless last night at bedtime.

Very good appetite.

Will continue 10 mg of coumadin through next Thursday (6-27).

Nurse will draw blood and check levels again on Wednesday (6-28).

Restless at bedtime again. Took 2 Darvasett instead of 1.

Drainage fluid still pink.

June 22

Slept 9 hours straight.

Good appetite. Blood Pressure good.

Restless at bedtime, took 2 Darvasette.

Drainage fluid pink.

June 23

Slept 9 straight hours.

PT, CAN and nurse all said she needs to spend more time on her sides to let bed sore heal.

Area around groin was treated with cornstarch for past two days. Now suspected to be yeast infection.

Dr. Albain suggests we treat it with Desitin.

Mom started taking Nystatin again. The nurse said it could help with the yeast infection in the groin/vaginal area, as well as her mouth. (saw two small patches in her mouth)

Old scar around the drain tube area show signs of redness with a small spot of yellow. Watch for any drainage, hardness, or redness accompanied by fever at the site.

Good appetite again today.

2000 – took 2 Darvasett with regular PM medication.

Drainage fluid pink.

June 24

Still using Desitin on groin/vaginal area. There’s almost no drainage from tube area. It appears to be closed. The scar area above it may be abscessed. The area that is red is now approximately 4-6 inches long and 2-3 inches wide. It feels hard in an area about 2 1/2 –3 inches in diameter. Found at bedtime. Will call home health nurse in the morning.

June 25

Called home health and spoke with nurse Shirley. Told her we had an appointment with Dr. Albain tomorrow but were told to call home health if there were any changes. She’s coming to look at it sometime today.

Nurse Shirley came by to check out the abscess area and called Dr. Albain. She asked if she was running a fever, which she wasn’t. Dr. Albain said she’d see her at her scheduled visit.

Today Mom had a scheduled appointment with Dr. Albain at the Cardinal Bernardin Cancer Center at Loyola University Medical Center.

When Mom developed her yeast infection, I asked her, "What else could possibly happen to you?" Last night when I talked to her, she said the home care folks thought she'd now had an abscess.

Cardinal Bernardin Cancer Center (Loyola)

She slept 10 hours, used the bedpan and rested another hour. Once she was up, we discovered the abscess had burst, causing two smaller holes. One was the size of a medium ballpoint pen hole, and the other was ½ again as large. It also appears the closed drain tube incision may now be reopening.

Changed the bandage and had to increase the size to cover both areas Tried to watch taping over affected skin. Called home health so they could update their info and called Dr. Albain’s office to let her know about new developments. She said to keep her 200 P.M. appointment. Cancelled 6-28 mammogram per Dr. Albain’s instructions.

Dr. Albain’s visit – weight 184 ½. When Dr. Albain asked Mom how she’d been, she was surprised when we mentioned the word “abscess”. Immediately examining her, Dr. Albain was somewhat annoyed that the "spot" had been described to her in the manner that it was. She said if it had been described correctly, she would have wanted to see her immediately! What she was seeing was not what had been described to her over the phone by the home health nurses. Mom was admitted back into Loyola today.

She said she’d spoken to Dr. Hantel (Loyola Staff) to arrange doing further chemo at CHO and he was agreeable whenever Mom is ready. But the matter of infection needs to be dealt with first.

Dr. Gancayco and Dr. Gurpta (Tubin’s replacement) saw Mom. They asked how she’d been doing and inspected the infection area. They ordered antibiotics (Cefazolin) and Darvon instead of the Darvasett for the pain. They need to be able to tell if she’s running a fever. Thus far, she hasn’t.

Went for chest x-ray and blood was drawn.

June 27

0945 – Mom was taken down for CT’s. She had an IV with dye and something oral for the contrast. Her right wrist is swollen. Nurse Pat checked to see if it’s from the IV and it doesn’t seem to be. She said she probably needs to keep her hand elevated.

Dr. Vigneswaran, Dr. Gramm, and Nurse Vicki came in. Dr. Vigneswaran said for Mom to plan on keeping her July 6 appointment unless she’s snot released until 7-4 or 7-5. But, he’ll get her home ASAP. He thinks the infection is sub-cutaneous (not coming from the lung). The CT showed fluid, but he thinks it’s only under the skin and not connected to the lung, nor connected to the other chest tube drain via a fistula. He says we need to keep the hole open to let the infection drain. They’ll keep an eye on her for the next couple of days to see if the antibiotic and opening are working.

He wants to treat it conservatively and not assume that the lung fluid is involved, keeping in mind her cancer could possibly spread if they try to check. Also, the coumadin factor puts her at risk if they do anything invasive. Also, if they do open her lung, there’s the risk of another infection if it’s not already involved.

Dr. Gancayco and Dr. Misetich came by and they’re having an infectious disease doctor come by to see what antibiotic to prescribe. Dr. Misetich agrees with Dr. Vigneswaran. He thinks the infection is subcritaneous. Once an antibiotic is prescribed and working, Mom should be able to go home with oral antibiotics.

She has a good appetite today.

Dr. Mariza (infectious disease) came in to question Mom about her cancer procedures including those in Ottawa and at Loyola. He will come back with his boss with a recommendation of an antibiotic.

Dr. Mullane (Dr. Mirza’s boss) came in. She thinks the infection came from Ottawa’s incision and had been brewing the entire time. It has been kept somewhat under control with all of the antibiotics she’s been on. She has three strains:

1. Coagulase-negatine staph – a skin organism, usually not virulent. It’s the least serious of the three.

2. Staphaureous – (the worst of the three) it’s a “tissue eater”.

3. Enterococcus – they’re working at treating #2 and #3, but not all 3. They’ll use Ampicillin and Probenicin. The Probenicin will keep the Ampicollin in the body longer (like an IV) and will keep the kidneys from excreting the penicillin.

She suggests they use a tiny needle (22 gauge) to check Mom’s lung fluid to see if the infection has penetrated that space. But of course, problems with the cancer could result even if a needle is used. If the fluid were involved, it would need to be drained. This is completely up to Dr. Vigneswaran.

On a positive note, the swollen area seems to have gone down since yesterday due to the antibiotics she’s been on since being readmitted. Nurse Vicki came in to pack the drain opening with gauze. She showed us how deep it is (approximately 2 ½ inches deep). She said to pack is loosely, just to keep the drain open. She said she could hear the fluid in Mom’s lung??

June 28

 Dr. Gramm and Dr. Vigneswaran removed the packing gauze and said it looked pretty clean. The IV in Mom’s right hand needs to be removed. Her wrist and hand are swollen. It’s no longer giving a good return.

Dr. Misetich, Dr. Gancayco, and Dr. Gupta came in. They said Dr. Mullane, the infectious disease doctor, had scheduled an “ultrasound guided thoracentesis”. They’ll use a needle to check the fluid in her lung to be sure it does not have the infection. Dr. Misetich checked a lump on the inside of Mom’s left wrist.

He said we need to keep an eye on it. He doesn’t know if it’s a bruise. He said it doesn’t look like a blood vessel. It’s in or near a vein and about the same size. Mom’s IV is now in her left arm (after 3 nurses and 3 tries). She’s receiving Ampicillin with Bactoban.

June 29

The procedure to insert a needle is now on hold! Dr. Vigneswaran doesn’t want them doing anything with the lung right now. They’re holding off on platelets until Dr. Vigneswaran and Dr. Misetich confer. They had discontinued coumadin last evening in preparation for the procedure today.

Mom is complaining that her head is sore. Will mention to nurse. Also sore neck this morning – right side. Asked the nurse check her temp, she feels warm. Packing gauze had a small amount of puss this morning, but is looking pretty clear.

1100 – Nurse Pat came in to tell Mom she is going for an ultrasound. They took her down at 1130. She came back at 1300. Dr, Vigneswaran says surgery is NOT an option. Dr. Misetich says they’re looking at it from a standpoint that it is getting better with antibiotics. Hopefully it won’t backfire at a later date and show up in the lung.

Dr. Mullane is looking at it from the standpoint that she wants to know exactly what she is dealing with. Right now, they’ll continue with antibiotic treatment and get her home as soon as possible.

Dr. Gancayco said if all goes well tonight, Mom could go home tomorrow. She said they’d try to get it set up where home health comes every day to do a dressing change.

IV started at 1315 now burning – knuckles swelling at 1330. Moved to top of right hand at 1400.

Dr. Mullane and Dr. Gupta want us to watch for a fever of 101 or more when we get her home. They also said to watch for shaking, chills or sweats (where she soaks her gown). She may develop diarrhea from the antibiotic (possibly severe). If she does, something can be prescribed to control it.

Started Mom on oral antibiotics, Will watch her 24 hours prior to releasing to go home.

Released Again - June 30

June 30

Nurse Vicki cleaned the hole with peroxide and repacked it. Respiratory Therapy attached water to Mom’s oxygen to help keep her nose from drying. Dr.’s Micetich, Gancayco, and Gupta came by to tell her she was definitely going home. Mom was released at 1715. It was a long day waiting to go home.

July 1

Mom slept 10 hours. Had to wake her up to eat before Home Health arrived. All vitals are OK.

Home Health cleaned the hole and replaced the dressing today. The girls (Vicki and Julie) had redo their work due to leakage that occurred 10-15 minutes after they left. Most likely caused by the peroxide. Prior to changing the dressing, we inserted Q-tips to soak up excess fluid in the hole. Once it looked dry, we repacked the gauze and changed the dressing.

Got Mom up to use the facilities, and she was already soaked again and draining yellow (at least a tablespoon). When she coughed, and at least another tablespoon came out. It was thick and yellow. Each time she coughed, more came out. She ended up saturating (6) 4x4 gauze pads and (2) damp wash cloths.

I called around 1100 and in her own words, she said she was “feeling rather good”.

That’s probably because she’s back home and is once again being doted upon by her 3 favorite nurses.

Mom’s 3 favorite nurses

1340 - Waiting over an hour for Home Health to return our call. Put fresh packing in again. Michelle came back and called Dr. Vigneswaran’s office. Dr. Sakiylak called back and said to rinse and swab it.

If there’s still puss drainage, irrigate it with saline, repack, and dress it. Under no circumstances, use peroxide (it’s a clean wound)!!!

1630 – Changed gauze and dressing again. Flushed with sterile water first. Drained approximately one and a half tablespoons of pussy fluid (yellow and milky). When coughing this hole sounds like the drain tube hole. Good appetite today.

July 2

Nothing out of the ordinary other than her wound is bleeding today. A doctor friend checked it and when he probed to see which way the fistula went, it started bleeding. Changed the packing at bedtime, still some bleeding. She has an area approximately 2” x 2” to the right side of the wound where the skin has broken down from the tape being applied and removed so many times. It keeps bleeding from friction. We’re trying to keep it covered.

July 3

Fistula drained quite a bit during the night. Waiting to pull the packing out until the nurse comes at noon. Irritated skin is still bleeding. We covered it with 2x2 gauze patch. The Home Health nurse came and said the fistula wound was looking better – no redness. The packing doesn’t seem to be going in as deeply as it did at first. She covered the irritated area with a non-stick gauze square.

July 4

Waiting for updates, but from my conversations with Mom, she’s feeling pretty good. When I tell her she sounds tired, she says, “I’m tired all of the time, but that’s going to get better”. It makes me wish I had the same convictions she does. I’ve called twice a day ever since coming back to Colorado, and those feelings of “I need to be there” never go away.

I talked to Julie and she was concerned that Mom’s face was getting so thin. It was very noticeable while I was still back home. She weighs under 180 now, and her legs are also getting mighty skinny. We keep thinking the scales are lying because she doesn’t look like she weighs anywhere close to that. It must be the fluid??

She sleeps an awful lot.

July 5

Had my morning call with Mom, and she said she’s starting to lose her hair in batches. I told her the doctors had said the chemo normally took about 3 weeks to have that effect. I suggested she shave it, cut it short, wear something if it was an issue. She said she was OK with it. It’s times like this that I pay for being in another state.

Home Health nurse changed dressing and packing; took PTT to check current coumadin level. CAN (Leslie) came for bath. PT (Don) to check for occupational therapy. Most likely will not be needed.

PT (Roger) will evaluate. He says Mom needs to increase her walking and exercise to build strength and be able to decrease oxygen usage.

Fistula is about 5cm in depth. It started out approximately 7.5 cm. Michelle (nurse) called at 1700. Mom’s coumadin will be raised to 10 mg for Wednesday and Thursday. She’ll retest Friday.

During the week of 6-18 – 6-24 and 6-25 – 6-30 Mom complained of her head being tender. Hair started coming out 7-1 and continues through 7-6. It’s coming out by the handful every time it’s brushed.

July 6

Everything is pretty routine today. The CNA (Leslie) came for Mom’s bath. Her fistula seems to be even smaller. Very little packing was needed.

Mom didn’t nap at all today and was ready to go to bed at 2100, but actually didn’t go to sleep until 2200. She took a walk to the back bedroom twice today. She seems to be short of breath today.

July 7

The nurse came at 1000. The fistula is still 5cm. The tissue is trying to fill in. We need to keep putting the packing in to help it heal solidly from the inside out.  Mom has blisters in a row where the skin folds. We sponged the area and placed a non-stick pad to help keep the skin from touching.

The nurse took blood to check her coumadin levels. She’ll call back later with results and will pass results on to Dr. Manigold and the Loyola Coumadin Clinic (per Dr. Albain’s request). Dr. Albain’s office called at 1150 to say Mom had an 1130 appointment today. We’ll take her this afternoon. She has a chest x-ray and blood work at 1430-1500 and an her appointment is at 1615.

My entry - Couldn’t get a hold of Mom today. Tried a few times with no luck. I and talked to Christie. She said her mom had the day off and she was going to spend it with Grandma. Except nobody was at home at Grandma’s. I left word for somebody to call to let me know what was going on.

Come to find out, the girls and Mom spent the day at Loyola. Dr. Albain’s office called and said she was supposed to be at an appointment. The day she was released from the hospital, nobody had gotten word to Mom when her next appointment was. So they rushed up to Chicago and visited with Dr. Albain.

Dr. Albain would like to set up Mom’s next chemo appointment. She had mentioned the possibility of doing so with Dr. Hantel at Ottawa, but asked Mom what she thought. Mom put the question back to her, and she said she’d like to continue seeing her a while longer if the trips were do-able. Mom agreed to do the next chemo at Loyola.

We came back from Loyola at 1832. During the visit, Dr. Albain said the blistered area (which is now red) is like a deeper rash. She recommended using Desitin on the area. Mom’s blood counts are good and the chest x-ray looks “a bit better”. Hopefully the next chemo treatment will be 7-13 (the same day as Dr. Vigneswaran’s appointment).The computers were down, so she couldn’t set up the appointment today. Dr. Albain’s nurse will call to give us the date and time.

We’re to call Dr. Vigneswaran’s office Monday or Tuesday to tell them Mom had a chest x-ray today; they can get it from Dr. Albain’s office. Dr. Albain is leaving for vacation 7-7 – 7-24. We’ll be dealing with Dr. Joseph Clark in the interim.

The nurse is calling in a prescription to Wal-Mart for Decadron ( a pre-med Mom needs to take 12 hours and 6 hours prior to chemo. She’ll call us with the times to take it to coordinate with the chemo time.

The coumadin clinic called to say Mom’s level should be between 2.0 and 3.0. Her INR is 2.09. So for now, we’ll keep her dosage at 10mg. Blood will be drawn again on Monday. From now on, we’ll deal only with the coumadin clinic at Loyola. Home Health will draw the blood but we won’t deal with CHO any longer.

July 8

Nothing to report today.

Admitted a 4^th Time

Calling Home Health to check Mom’s wound. The entire outer opening is filled with tissue. It’s movable and oozed some yellow (enough to saturate an 8 ply 2x2 gauze pad. We’re not sure if the oozing is normal because of the tissue or if there’s a space under the tissue causing the oozing??

Mary Ann (nurse) called and said to put a small amount of packing gauze under the loose tissue just to keep a hole under it. She said to keep a dressing and change extra if needed. Since there’s not a temp or pain, it’s probably normal. She’ll call Michelle (the attending Home Health Nurse) to let her know we called. She’ll be coming by tomorrow morning.

1930 – Mom had an episode. She complained of abdominal cramping, felt nauseous and broke out in a cold sweat. The color drained from her face and arms and she started jerking. We tried to talk to her and she was unresponsive. She had a far away look in her eyes. It lasted about 2-3 minutes. We called 911. When they got here, she was coherent and not wanting to go to the hospital. Her vitals were fine. We called the Home Health nurse to tell her what happened. She recommended ER treatment.

We called Dr. Joseph Clark at Loyola and he said a diagnosis over the phone is difficult. He said it could be a TIA (minor stroke), some kind of seizure, or a side effect from her chemo. He asked if this would be enough to convince her to come to the ER. She said she’d go if we took her. We told her we needed to know what SHE wanted, and that the call was hers to make. We also told her that if she had been unconscious, we would have let the paramedics take her to the hospital. If she doesn’t want to be hospitalized, she needs to tell us.

She said that if it’s necessary, she’ll go. We took her to Loyola’s ER.

My entry - I talked to Mom this morning and she had slept until 1045. The girls had to wake her for lunch. She sounded OK and asked if and when I was coming home. I told her it depended on when the car I was having shipped would arrive. If it didn’t get here before Tuesday, I would probably just arrange my plane ticket to Toronto to go through Chicago.

2000 – (CDT) I noticed the caller ID was Mom’s number. It was Vicki. Mom had gotten up to go to the bathroom, and began getting dizzy. She then started sweating profusely. All of the color drained from her face and finally she was unresponsive to the girls. They called 911. The ambulance came and the paramedics started looking at her.

I don’t have all of the details at this time, but at some point, Mom became responsive and vehemently refused to be taken to either Ottawa (CHO) or Morris hospital. She insisted on going to Loyola. The medical team feared she might have had a minor stroke, and said they were not allowed to pass up a hospital on route. The girls talked with Loyola and agreed to drive her to Chicago.

July 9

I talked with Vicki briefly this morning, and Deb will fax me up to date notes as soon as she goes back to work. She took a long weekend off to be with Mom. Last night the emergency room team at Loyola did various tests, including a CT with and without contrast, chest x-ray, and EKG.

They did blood work and a urinalysis but were unable to find anything conclusive. They will do an EEG tomorrow (Monday), but wanted to admit her to the telemetry unit to observe her. They discussed keeping her long enough to administer the 2^nd dosage of chemo. She’s in room 2302.

Emergency Room - Loyola

The ER doctor checked her fistuala. He removed the tissue, which left a hole about ¼ inch deep. He showed us how to fill the hole with gauze and then dress it.

Following is the email I sent to Mary Fitzgerald and Dr. Albain this morning in regards to last night’s ordeal:

Mary,

Just FYI, Mom was admitted again last night. She started getting faint around 8 PM, perspired profusely, and finally became unresponsive. My sisters called 911 and when the paramedics came, she refused to go to either the Ottawa Community Hospital or Morris Hospital. They suspected she may have had a minor stroke, but she insisted on going to Loyola. The ambulance drivers are not able to bypass a hospital en-route, so my sisters brought her to Loyola last night. That has to say something about her attitude towards your establishment and the care she feels she receives there!!!

They did a chest x-ray, EKG, and CT last night and have an EEG scheduled this AM. Thus far, nothing has shown up to indicate a stroke. One of my questions Mary, is how do we obtain a copy of Mom's medical records. Her hospital-stays have become quite frequent, and in our minds, the visits start to run together. This is her 4th time being admitted to Loyola.

Also, as a convenience, Dr. Albain was arranging for Dr. Hantel to administer future chemos at Ottawa Community Hospital, but Mom chose to continue treatments through Dr. Albain for the foreseeable future. Again, you can be proud of a talented professional staff. Mom has become very fond of Kathy!

I believe Mom was in an "IC" room overnight (2302) and they'll keep her under observation for a day or two and possibly even long enough to do her 2nd batch of chemo?? Thanks once again for the continued support and care she gets at LUMC! When you said she was going to be treated like a VIP at Loyola, you weren't kidding.

One last concern, and you may or may not be the person to address it. Since Dr. ALbain is on vacation, I'll ask you, but I'll CC' her on my email. Currently, two of my sisters are off work taking care of Mom. She has Home Health nurses/therapists coming for house visits several times a week. When these incidents occur, I want to be sure she's getting the best possible care. Is it really smart for her to insist on being transported 70 minutes away when she could be in a local hospital within 15 minutes?

I fully understand her reluctance to being admitted to an area hospital, especially one where she had such a nightmarish experience; but shouldn't ER type treatment be IMMEDIATE? If she actually was having heart problems, how smart was it for her to insist on being taken to Chicago?

Also, I'm a huge supporter of Hospice Care. I'm not what sure LaSalle County offers in that regard, but at what point would hospice be a consideration? Do you or Dr. Albain recommend hospice care at some point, or do the Home Health nurses provide the same level of care? My feeling is that hospice nurses specialize in cancer patients.

Thanks once again for providing Mom with what we all feel is the best possible care!

Best Regards,

Barth Cunico
Voice (Co) 303-438-7089
Mobile 720-480-1507
bcunico@worldnet.att.net

July 10

An ultrasound echocardiogram was done revealing nothing. The EEG wasn’t done. The doctors decided Mom did not have a TIA, but were unable to determine exactly what happened. She was released at 1800.

July 11

No news

July 12

Nothing new.

2100 - Took initial pre-meds for 2nd chemo.

July 13

0300 – Took 2nd batch of pre-meds.

0900-1330 – Second round of chemo done at Loyola. Chemo was tolerated well.

1500 – Checkup with Dr. Vigneswaran. He says the fistula is nearly healed and looking good. He wants to see her again on 8-3, probably a final visit.

July 14

Flushing on face and neck ( a side effect from the chemo). Very thirsty today. She lost her balance twice. Also, her right eye looks like a broken blood vessel on the inside corner.

July 15

Mom didn’t sleep well last night. She seems ok today – no flushing.

July 16

Up for breakfast – back to bed after eating. She’s feeling nauseous and has a headache. No appetite.

July 17

Napping most of the morning and early afternoon. Feeling tired and crampy.

1417 – INR said to keep coumadin at 10mg through Sunday. They’ll draw blood again Monday.

July 18

Feeling a little better in the morning. She was up for breakfast and laid back down. She was up again for company between 1 PM and 340 PM. When they left, she laid back down for 10 minutes and got back up feeling nauseous with abdominal cramping. Vitals were:

• BP 105/58

• Pulse 114

• Temp 98.3

She was back up at 8PM to eat soup. She was feeling better but had a headache.

July 19

Light headed several times. The nurse checked her blood pressure while lying down (110/58). When she stood up, it dropped to 80/50. They told her to get up more often and to move around.

Mom got up twice after 2 PM and got light headed both times. She ate a light supper at 5 PM. Again, she felt abdominal cramps and sick. She lost color in her face and was again light headed. She was still cramping when she returned to bed at 530 PM. She had a headache and complained that the pain medicine (Darvon) wasn't helping her headaches.

July 20

Up at 0930. Ate a doughnut and coffee. Complained about abdominal cramping. Feeling better after BM.

July 21

Feeling good. Up most of the morning. Abdominal cramping started again at 5 PM.

July 22

Feeling okay today. Took an afternoon nap. Good appetite.

July 23

No news...good news.

July 24

Blood drawn -CBC for chemo clinic & INR level checked for Coumadin. Stay at 10 mg through Sunday (7/30). INR = 2.02

Mom was up and down several times. Doing well. Got up too quickly one time and felt light headed. Good appetite. Took afternoon nap.

July25

Nurse Lisa (Dr. Albain's nurse) called. Instructions for the next 3-4 days are:

1.      Take temp every 4-6 hours Report anything over 100.5

2.      Watch for chills

3.      Drink lots of liquids

4.      No fresh fruits or veggies except for those with thick skin like banana, orange, cantaloupe. No tomatoes, lettuce, strawberries, apples.

5.      White count 2.5 (okay but low). Neutrophil count is 0.5. Needs to be at least 1.

According to medical books, this is a side effect of the chemo.

Ran an evening temp of 100.1 at 1030 PM.

July 26

Doing okay. A little tired. Afternoon nap. Backache - no temp.

July 27

Doing okay. Took Darvon for backache. Temp still okay.

July 28

Nothing new. Temp okay.

July 29

840 PM temp of 100.1. Down to 99 at 1030 PM.

July 30

Blood taken to check ProTime (Pro Time is a hand held instrument that allows prothrombin time (PT) testing at home.. Nurse called to say it's at 2.36. Waiting for coumadin clinic to call with dosage. Will stay at 10mg until notified to change it.

Mom seemed to be napping more today and this evening. Otherwise, no changes.

August 2

Okay, but urinating a lot. Will mention to Dr. Albain on Monday to see if a new urinary track infection is suspected.

August 3

Visit to Dr. Vigneswaren. X-ray looks the same. Abscess hole looking good. He removed some tissue and said we could discontinue packing it. We just need to keep it covered with a gauze dressing. He wants to see her one more time in a month.

After eating supper, Mom ran a temp of 101. Called Dr. Albain and told her about the frequent urination. She said we should have told Dr. Vigneswaren or called her while we were at Loyola. She called in a prescription for an antibiotic to treat a possible un and said to call her nurse Lisa in the morning. Also said she'd have to call Home Health to have a CBC done. Mom was up all day from 0730 until 1130 PM with no nap.

August 4

Called Nurse Lisa and told her about Mom. Told her Mom's temp at 0857 AM was 99.7. She said to keep an eye on her temp through the day and to have her drink plenty of water and cranberry juice.

Home Health Nurse Michelle called to say she'd be here at 230. I told her she had to draw blood for a CBC so she came at 0930. AT noon Mom's temp was 100.4. AT 0515 PM it was down to 98.7. She napped for 1 hour in the afternoon.

When the physical therapist came, Mom's pulse was 125. After walking from the snack bar to the front door, stepping out onto the porch, back up and about 15 feet, she was breathless. After sitting down and resuming normal breathing, her pulse was 130. So the PT decided not to do any more therapy. She said the temp and lack of rest could be a factor. Before she left, Mom's pulse was back down to 120.

August 5

Okay. Temp of 99.

August 6

Temp of 99. Breathless a few times.

August 7

Temp of99 and somewhat breathless. Appointment with Dr. Albain -said she'd give Mom a lower dose of chemo today due to her blood counts. A shot of Epagin (Procrit), also called Erthraprotietin, will be given to help raise the red blood count. It's 9.6, which isn't dangerously low, but the shot will help raise Mom's energy level.

CBC levels:

WBC 3.9 PLT 468 HGB 9.6 ANC 3300 Weight 184 BP 130/62 Temp 96.4

Says Mom should be taking Compazine after chemo on a regular schedule to prevent nausea.

August 8

Temp low 97.8. Face and neck flushing (due to chemo). Tolerated bath well but short of breath when PT came. Pulse and BP okay, but therapist didn't want to over work Mom. After sitting on the bed, Mom felt shaky. Her hands were noticeably shaky.

There was some question as to whether or not Mom's oxygen setting needed to be a "5" (she was a "2" prior to the embolism). The Home Health folks thought she might not be getting the full benefit from her oxygen making machine. The therapist called the nurse to be sure she brings a pulse/ox to test Mom's oxygen level. We changed out her 50 foot oxygen tubing to be sure it's not the problem. Also changed to a new canula.

Called Coumadin clinic to see what Pro Time was and if dosage changed. They said the lab didn't draw for it. We'd asked Dr. Albain at yesterday's meeting if it had been ordered, and she said it had. Home Health came late today and is here, so they will draw it. They called around 7 P.M. to say no Coumadin tonight.

August 9

Called Dr. Albain's office to tell them we need an order sent to Apria so Medicare will cover the oxygen tank refill and humidity bottles, since her 02 level switched to 5 liters. Mom can take Ativan to help her sleep. Coumadin -INR is 4.31- probably due to Bactrim.

8-9-00 -take 3 1/2 tablets through 8-14-00 (8 3/4 mg)

8-15-00 -take 4 tablets (10 mg)

8-16 -blood drawn by home health nurse.

Probably sleeping is most likely due to Decadron, also shakiness. Called Loyola at 744 P.M. when Mom coughed and approximately 1/8 cm yellow watery discharge came out of fistula hole. Dr. Who said as long as she's not running a fever or having chills, and the discharge is watery/not mucous, it shouldn't be a problem. If Mom has increased shortness of breath or chest pain, she needs to be seen. It could be a new fistula, or the old one is still eliminating infectious fluid. Took Ativan to help her sleep.

August 10

Fistula still draining. When she coughs hard, it seems the inflated lung must be pressing outward against whatever pocket the infection was in. At least a tablespoon at a time comes out. Can't feel any swelling to show us where the fluid is coming from. Temp has been consistently below normal since chemo. Usually 97.6 to 97.8. Had PT and bath today.

Still slightly breathless and a little shaky. Took Ativan at bedtime to help her sleep. It seemed to be too much medication tonight. The Decadron must be wearing off.

August 11

Told Mom the Ativan is probably not necessary after last night. She already takes two Amitryptelene for sleep and also takes 2.65 mg. of Darvon on a nightly basis.. Called Dr.

Vigneswaran's office and talked to Nurse Vicki. Already changed Mom's fistula 2x's today.

Asked her if drainage could be an infection and told her Mom's antibiotic was finished on

Thursday. She said it is most likely just fluid -once the wound closes, it'll stop. If she runs a fever, or it changes to puss instead of liquid, we should call. We're to call on the 14th to remind her to tell Dr. Vigneswaran about it. He's out of town until then.

August 12

Mom took a shower and got dressed. We took her to Joliet and pushed her in a wheel chair at the mall. Went to 3 stores (all we had enough oxygen for). She enjoyed it -but was tired when we got home.

Seemed fine today. Took an extra Amitriptylene to help her sleep. Mike Cunico stopped by and had a nice visit.

August 13

(Julie now takes over Vicki's note taking responsibilities!!)

Feeling pretty good today but tired from yesterday. Appetite okay. Didn't nap except for about an hour in early afternoon.

August 14

Vicki went home. Mom had diarrhea in the afternoon (thanks for sharing!). Later, she got dizzy after I changed her drainage pad. Put cold washrag on her forehead and had her lye still for about half an hour. Never took a nap all day. Went to sleep around 1130 P.M.

August 15

Nothing new. Stayed awake all day. Asleep by 1200 AM.

August 16

Nurse & Nurse's Aide came today. Drew blood for her coumadin. Took Mom over to see Aunt Ruth. She's been sick for over 3 weeks. Didn't take a nap. Asleep by 1200 AM.

August 17

Coumadin clinic called this morning. Said Mom's levels were a little low (1.72). Mom's dosage for this week will be:

• Thurs -3 1/2 pills

• Fri -4 pills

• Sat -4 pills

• Sun -4 pills

• Mon -3 1/2 pills

• Tues -4 pills

• Wed -4 pills

• Thu -blood retested.

Julie sez -"I'm going home for a long weekend. Stressed out!!! I love Mom but I need some time for me".

August 18

(Deb temporarily takes over on notes during Julie's stress leave)

I think the shot she had on 8/7 to raise her energy level "kicked in"!! Mom and I sat on the deck this morning. I had coffee; she helped fold laundry (wash clothes and hand towels)! She worked on her "Mother's Memories" book, and she had a great day!!!

She's still a little wobbly, so you have to keep an eye on her because she tries to take off on her own. All in all, she felt good today!

August 19

Up at 0800..thanks to her favorite baby boy (I, me, Barth must have called early??). Coffee and breakfast on the deck and off to Wal-Mart. Mom wanted to pick up a couple of things. We left at 1100, and 2 tanks of oxygen later, we were home. She loves to get out and as she puts it, feel like a person again. She was flushed later in the afternoon and her temp was only 97, so we may have done too much in a day.

August 20

Mom woke up early but wanted to rest for a while. She was a little more tired today, although she did do her chores (folded her washcloths, and hand towels), and did some mending. She's trying so hard to do for herself. She was flushed again this afternoon. No temp. She talked about her test tomorrow…hope it’s good news!!!

August 21

Took Mom to Loyola for her CT (with contrast) and blood work. She looked so pretty. She was wearing a lacey blouse, short outfit, her new hat, and watch. She was HOT!!! She wanted to look nice in case we ran into her favorite doctors.

We didn't find out anything yet, but the day went pretty smoothly. On the way home, we took the scenic route (gawking at the houses) and Mom was hungry for a good steak. She said she hadn't been out to dinner for so long, so we took her to Lone Star. She got her steak (3 bites), but she was happy. Got home at 6 PM and she was tired, tired, tired!

August 22

Woke Mom up at 0700 to take her to the bathroom. She slept all night. Went back to bed until 0900. Talked to Loan White from Coumadin. Her pro-time was 1.9. Blood will be drawn again on Monday. Delinda came to see her today. They had a nice visit. Mom's appetite is good. Weighed 186. She's looking forward to a movie and popcorn tonight.

August 23 -August 26

No notes to speak of.

Round 2 in Mom's Treatment

August 27

I flew in today (I, Me, Barth) and was pleasantly surprised to see Mom "beefed up"! She actually has an appetite for the first time since I can remember. She was sitting at her favorite Kitchen stool in all of her glory. This is the first time I've seen Mom since her hair loss.

She actually looks pretty good with the Mr. Clean look. She was all excited about showing me how well she can scoot around the house with her cane (and very little -no assistance). It was more like a shuffle, but nonetheless, impressive and encouraging! She's exceeding the goals the Physical Therapist sets for her.

She spent the afternoon and evening telling me how hopeful she is that the news will be good in Chicago. It's been April since I've seen her with this much energy. She's extremely nervous and keeps repeating how she's keeping her fingers crossed. We're all hoping there won't be a big letdown tomorrow.

I had sent email to Loyola (Mary Fitzgerald -VP) asking for copies of Mom's records (to date). The girls received them a few weeks ago and said there were some interesting notes, which we hadn't been told. I pursued the 58 typed written pages, and will list just a few of the comments that I either didn't comprehend, or thought was noteworthy.

Medical Record Comments

In some cases, I tried to find adequate definitions and my comments/footnotes are added.

• Mom's cancer is frequently referred to as adenocarcinoma of unknown primary-meaning they're not sure where it originated.

• Questionable arrhythmia.

• Right pleural thickening.

The pleura is the thin membrane lining each half of the chest cavity and enveloping the lungs

• Not sure what is going on between the subcu area and the pleural space (ruled out low grade or smoldering empyema).

The subcutaneous tissue is the 3rd layer under the skin, and contains fat and fibrous supporting structures. An empyema is an exudative pleural effusion (abnormal accumulation of fluid) caused by direct infection of the pleural space, causing the pleural fluid to appear purulent (pus) or turbid (muddy) -usually the result of chest trauma.

• There is loculated right hydro-pneumothorax, which extends from the lung base to the level of aortic arch.

Loculated = series of cells - pneumothorax=accumulation of air in the pleural space

• Tiny amount of bilateral pleural calcification.

Bilateral means both sides. Plueral calcification presents as focal, usually fenestrated, irregular plaques on the coastal surfaces following intrapleural hemorrhage or infection, though a history of such an antecedent acute pleural lesion is often unobtainable. Focal plaque-like pleural fibrosis, at times with calcification, occurs many years after exposure to asbestos, most often involving the diaphragmatic pleura; this may be the only evidence of low-dose, relatively brief exposure to inhaled fibers.

• Moderately enlarged mediastinal lymph nodes (largest precarinal region measures 2.5 cm.)

Lymph glands are located in the neck, armpit, groin, abdomen, and mid-chest (mediastinum). The mid chest area can be further divided into 3 compartments (anterior, middle, and posterior). The precarinal region is the lymph node itself.

• There is right lower lobe atelectasis.

Atelectasis = lung collapse

• There are vague non-specific fluffy infiltrates in the left lung (her good lung).

infiltrate = entered the lung by penetration

• A small amount of free fluid is noted within the pelvis.

• The left ovary is not visualized on both transabdominal and endovaginal imaging.

Where did it go?  She still has her ovaries

• A cystic appearing mass is identified in the left adnexa, which may represent either a large cyst with internal septations or three separate small cysts adjacent to each other.

• Rales at the base of left lung.

rales -abnormal sounds caused by obstruction of the airway by mucus, tumors, or foreign bodies

• She is tachycandic

The following were noticed when Mom had her embolism

• Sinus tachycardia with premature supraventricular complexes

Sinus Tachycardia is a heart rate faster than 100 beats per minute that can be caused by exercise, emotions, pain, anemia, heart failure, drug effect, fever, thyrotoxicosis,.etc.

• Left anteriol divisional block

• Right bundle branch block

• Bifasicular block

• Inferior infarct

Sinus bradycardia is most common in Inferior infarctions or may be precipitated by medications. Observation or withdrawal of the offending agent is usually sufficient.

• Abnormal ECG

Okay….interesting stuff, and now you know what I don't know!

August 28

Deb got Mom up at 0510 to start getting ready for the “big trip”. She was wearing a snappy looking outfit that matched one of her new designer hats. She was looking pretty dapper. Today is a crucial day for her future treatment. If the cancer is not improved, we may have to opt for Hospice care. They would help Mom deal with the mental and spiritual aspects of the disease, which the medical staff would be less qualified to do. Mom was nervous and concerned all of the way to Joliet. Once we picked Julie up at her house, she was able to take her mind off worrying for the remainder of the trip. Monday morning Chicago traffic was enough to keep the three of us occupied. We were half an hour late getting to the hospital.

They drew blood when we arrived, and then Dr. Albain's nurse took Mom's recent history and checked her vitals. Mom had gained 7 pounds! It couldn't have been from her daily treats. Since she's started feeling better this past couple of weeks, she's had a yearning for popcorn, candy, ding-dongs, and ice cream. She doesn't eat much meat or many veggies, but is pounding down the sweets. Aside from the weight gain, her BP was 148/72. I somehow missed the pulse rate, temp, .etc.

She asked how Mom's been doing, and the girls and Mom had prepared a short list of questions for her.

Great News!!!!!!!!!!!!!!!!!

These included:

• She had been dizzy for 5-10 minutes

• She had seen black spots on a couple of occasions

• She experienced soreness and numbness in her right breast

• She had a cough for a few days and felt tightness during this time.

• Her ankles had been swollen (water retention).

Dr. Albain said she would probably experience the soreness and numbness for quite some time, but she should ask Dr. Vigneswaran. She said the spots and dizziness were probably from her low blood counts. The swollen ankles could be from the Procrit shot.

Then Dr. Albain discussed the results from last week's tests, and the news was GREAT! The CT's showed the cancer in her abdominal/pelvic area was less pronounced, and the size of the largest mediastinal lymph node in the precarinal region went from 2.5 cm to I cm. There was slightly more fluid in the upper area of her right lung, but overall, Dr. Albain was extremely happy with the results. Providing today's blood results were good enough to proceed, Dr. Albain was all for starting a 2nd round of 3 more sessions of chemo. That is, if Mom felt like she was ready to continue.

Mom asked if this meant she was going into remission, and Dr. Albain said, it just means there's been an improvement. And right now, we should be very happy with any improvement. The blood test results showed Mom was ready to proceed with chemo, but at a reduced amount. She was given 75 units instead of 100 units. We sat with her during the intravenous administration of her chemotherapy, and initially were thinking of asking for a shot to reverse her newly found energy (just kidding!!!). She was a little bit too frisky, especially after getting the good news. She was also given another shot of Procrit (Epogen) today. Shortly into the first drug, for the first time during chemo, she actually dozed off for an hour. She was finally able to relax from all of the nervous tension working up to this moment.

August 29

Today the PT (Karen) came at 0100 PM. She checked her vitals:

• BP 124/60 Pulse 100

She did her walks/exercise, and Michelle (nurse) came at 0110 PM. She looked at Mom's wound and said when the drainage stops, and it continues to be dry for a few days, there will be no further need for a bandage.

Mom folded clothes, washed some dishes, and worked several brain stimulating puzzles today. She napped for an hour or two mid afternoon. Tonight she shed the 7 pounds she had gained with one humungous BM!!! It was material for either "Ripley's Believe it or Not" or "How'd they do that?" television shows.

August 30

We fixed Mom a huge breakfast this morning. Her appetite is vastly improved over what it was a month ago. The home health nurse (Kelley) came at 0950. Karen (the PT) came around 0200 PM and Mom did her paces through the house. Mom was tired today.

August 31

Mom was feeling really tired today. Mid-afternoon she mentioned she was having a lot of

soreness (not pain) in her right breast through to her back. It took me two hours to talk her into taking a pain pill. Within an hour, she was feeling better. The night was saved. We watched a movie (with our favorite snack -popcorn), then out to the kitchen for our favorite bedtime snack (another favorite) ice cream. Tucked Mom into bed at midnight "happy and full".

September 1

Mom was up once during the night at 0400 AM. She was bright eyed and bushy tailed at 0715. Had coffee on the patio and by 1030 Mom had already broken her own "Ripley's Believe it or not" record. Actually had to call in the plumber!

Had a really good day. Took her to Wal-Mart to look around. Mom enjoys that! By night time, she was getting tired. Deb was spending the night with Mom. I went home around 0800 PM. Called Mom at 0900 to let her know I made it home OK and Deb already had her in bed for the night. No treats. ..she was never that good for me. I'll be back on Sunday.

September 3

I came back Sunday at 0200 PM. Kathy and Mark were here. They visited most of the day. Mom sat up the whole time. No popcorn at bedtime, but she had room for two big bowls of ice cream. I finally found her favorite (Pralines + Cream) at Jewell in Joliet and brought a gallon for her. Tucked her in bed for the night at 1030. Around midnight I heard her bell ringing.

When Mom first became bed-bound, Debbie found an old "hotel-type" bell that they taped to the bed rail. Whenever Mom wants for anything, all she has to do is ring.

My last trip home, Deb had bought an outdoor portable intercom system (with headphones). They turn the unit on by her bed (equipped with a voice activated microphone), and the person responsible for her wears a receiver with headset. This way they can mow the grass, .etc., and still hear Mom.

A trooper til' the end

She had been lying there for half an hour thinking about cheese. I got her up and she had about five slices of cheese with a tomato. Tucked her back in and ended up watching a movie that went off at 0230. She couldn't sleep.

September 4

You would have thought Mom would sleep in, but "Oh no", she was up by 0730. She was feeling pretty good so Deb and I took her to the Joliet Mall. Gone all day! Later in the night, she (missing notes)

September 11

Mom had a good day today. Nothing unusual happened. She's been really tired with this bout of chemo. She doesn't feel like doing her chores. We watched a movie tonight and had our popcorn, so she was happy.

September 12

Phones have been out all day. Mom's worried that her Baby Boy (ME!!) been trying to call. She's tired again today. Took a nap this afternoon. She's been having pains in her stomach again tonight. Took a pain pill and it seemed to help.

September 13

Mom was doing really good today. Said she was tired of having to stay home all of the time. She felt like she was going a little loony. Tonight around 1000 PM, she got pains in her stomach again. Sat on the toilet, got sick, and needed to lay down. Her legs gave out on her and she ended up on the bathroom floor. I made sure she was coherent and comfy, and called Deb to help me.

Her vitals were OK:

• temp-97 ,BP-113/4 7 ,pulse-99.

It took a while, but we got her back in bed. She never had a BM, and she was nauseated, but never threw up. Took a pain pill again around midnight, and felt better.

September 14

Mom woke up early but I made her stay in bed. Her legs were hurting her. She wanted to stand up just to see if she could walk, but her legs were wobbly. The nurse came to check on Mom and said her leg pain could be from the way she fell, or it could be from her chemo?? She's been ordered to use her walker for the foreseeable future, and the nurse brought a commode for her to use. Mom slept most of the day.

September 15

Mom had a good day, but tired in the afternoon. Se took a nap. Nothing unusual.

September 16

Mom was tired in the morning. Back in bed by 1030 AM for a nap. Had pains in the stomach in early afternoon. Took a pain pill and felt better.

September 17

Mom had a really good day. Training Amber to care for Mom. Chemo tomorrow.

September 18

(my -Barth -earlier entry) I called Mom last night and she had just returned from Loyola. She had blood work and because her white cell counts are so low, Dr. Albain opted to wait until the 26th to do the next round.

Mom went up for chemo appointment with Dr. Albain (Dr. LaBain as Mom would say) and blood work. She couldn't have chemo due to her low white blood count. The nurse couldn't remember the actual count. She had another Epogen shot. Her next appointment is 9-26 at 1130.

Mom's weight was 190 1/2, temp 98.3, BP 160/80. Oh yes, once again Mom said too much and was scolded by Dr. Albain. In fact, Dr. Albain said at one point she was going to leave the room (poor Mom). She looked like she was going to cry. Dr. Albain said to leave Mom's oxygen level set at 5. She doesn't want it lowered.

New Caretaker (Amber takes Over)

September 19

(Amber's 1st day on the job) Grandma woke up at 0730 and layed back down until 0800. Michelle came and checked her vitals: BP was 138/74, temp 98, pulse 108. Cheeks were flush, Michelle said probably from Epogen shot. She was discharged from Michelle today (her wounds are healed). Had a good day.

September 20

Grandma took a nap around 300 PM. Had a good day but felt tired.

September 21

Grandma was real tired today. Vitals: BP 106/60, pulse 100.

September 22

(Julie's back for the weekend) Mom has been real tired and depressed today. Awfully quiet. In bed sleeping by 930. I think she's depressed by not being able to see Aunt Ruth and Uncle Bill. I told her tomorrow if she's feeling OK, I'll take her over there for a while. She perked right up. Karen (PT) also thought she was depressed. She thought maybe it was from having to use a walker and not being able to have her chemo. She was going to talk to Kris (head PT) and see if she might be able to try a cane again.

September 23

Took Mom to see Will and Trude (Bill & Ruth) and I walked along side her and let her use her cane. She's happier! Still tired and took a couple of naps. Had pains again tonight and I gave her a pain pill. She's beginning to feel a little bit better. Slept all night (Good Girl).

September 24

Mom had a good day. Her mood seems better but she's very worried because she's so tired and they won't give her chemo. Slept some this afternoon. Had pains again tonight. Took a pain pill. Still having very large BM's.

(my note -Barth) After talking to Dr. Albain today, the fact that she mentioned she was wondering why the bowel regimen she prescribed was not being adhered to, I called Debbie & Julie. A few months ago, Dr. Albain had prescribed both a stool softener and a fiber (Metamucil??).

The girls didn't realize Mom was supposed to continue with the fiber. She does take the softener, but possibly the combination of the two would make BM's more regular and less of an event??

September 25

Had cramping again this morning. Used commode and seemed to be OK. Karen came but didn't stay because the PT (Chris) is coming to re-evaluate Granny. BP was 110/60. Also had back and stomach pains today.

September 26

(My entry) I tried calling for several hours tonight to find out how Mom's chemo went. I finally got a hold of her close to 0930 PM. Her chemo had started late. I suggested from here on, during her Chicago visits, I would very much like whoever takes her to make a courtesy call to someone back home so we know when they're leaving Chicago. After all, she has a car phone.

She was happy as she could be because she had her chemo. Just a little tired. I told her Dr. Albain and I talked, and I said I had mentioned the fact that she didn't listen to Mom's list of concerns. She said, "Oh Barth, what did you say? I don't want Dr. Albain to get rid of me. I really like her."

I explained that Dr. Albain and I had a very good talk and Dr. Albain did mention the fact that Mom has a tendency to take off in a different direction from where the conversation was initially headed. Mom said, "Yeah, I guess I do, and I hate the fact that I interrupt people. But if I don't cut in when I need to say something, I'm afraid I'll forget what I want to say. You know I am a 70 year old woman." I told Mom it has nothing to do with being 70. I told her back in April (prior to becoming ill) she was sharp as a whip and in my opinion, very capable of conversing coherently. I told her not to worry, that we had a very nice talk, and Dr. Albain suggested that I start sending entries from the journal to her a few days prior to her visits. She very much wants to know all of the details for the periods in between visits. Mom was somewhat appeased by this explanation, and said, "I just don't want you getting her mad at me.”

Amber's NOTES -Granny had chemo today. Had a good day. Coumadin level stayed the same. Had a very nice day with Dianne. They lowered the chemo dosage again this visit.

September 27

BP 138/70, Temp 97, Pulse 104.

Granny was flushing today. Still had cramps but it was a good day. Her right arm was blotchy from the elbow up. She felt feverish.

September 28

BP 130/60, Pulse 100

Granny had a good day today.

September 29

BP was a little low in the morning. Took her to WalMart. Had a good day.

September 30

Had a good day

October 1

Good day

October 2

Kelly and Chris came by. Everything was fine. Good day.

October 3

Had cramps today. She was tired today. Kelly will only be coming two days a week to give Grandma her bath. (Sidenote from Deb -Mom's been pretty tired after this chemo, more so than normal, but I guess that's what's to be expected. She says she's "resting up" so I can take her Christmas shopping this Saturday. She's amazing isn't she? Worried about Christmas! Amber is doing a GREAT job. It's a riot to watch her and Mom together!!!

October 4

Granny was tired today, but other than that, she had a good day.

October 5

Granny felt a little dizzy when she was walking with Karen today. Her coloring turned white and BP was 170/60. She felt crampy and her pulse was 130. She laid down and relaxed for a while and her pulse and BP went back to normal.

October 6

(Deb) Mom napped and rested off and on during the day. She's looking forward to tomorrow. We're going Christmas shopping!! That's if she's feeling up to it.

October 7

Shop til' you drop! This was our day. Mom jumped up this morning, gave her a shower (thank heaven her hair doesn't take that long to do), dressed her in a warm fuzzy sweater, and off we went. There were sales galore and she zipped through her list. She was tired when we got home. I was tired from pushing her around. ..but she was happy, and she'll sleep like a baby. We had a fun day.

October 8

Mom rested today, Aunt Ruth, Dianne, Buggy (Julie), the Girls and I kept her entertained. Her tongue is strawberry red again. We're calling for a prescription for a "swish" on Monday.

October 9

Granny did good today.

October 10

BP was 130/60, Pulse 106. Had blood tests done in Ottawa for the first time (usually done in Loyola) for coumadin level (2.09 range). Her dosage stays the same. Good day.

I, Me, Barth, came home today. I told Mom she looked like she was packing on some weight. It wasn't very complimentary for her to hear, but she knew I meant it in a good way. Being away for weeks at a time, I have the advantage of noticing changes. She doesn't have that "bony, sickly" look, which I thought was GREAT. I told her it appears something is working!

It's a real hoot  watching Mom when she listens to her music. She and Aunt Ruth love their Gaither's! I gave her my headphones (she fondly calls them speakers), and once she has them in place, the outside world goes away. She starts showing her soulful side as she begins to be-bop and sing along.

October 11

Amber is doing an outstanding job taking care of Mom during the week. Being able to have a family member to assist her with her hygiene needs, means an awful lot to keeping Mom's dignity in tact. However, Amber is not a Domestic Goddess! Her cooking skills are somewhat limited. She's quite capable of buttering banana nut bread, pouring milk on dry cereal, and is very creative with Macaroni (in a box) and hotdogs!!! So I ventured out to Mom's favorite Seneca Restaurant and picked up breakfast sandwiches to surprise her. The Ladies at the restaurant always tell me to give her a great big hug (She was a frequent customer during her healthier days). I think she was elated to have a warm breakfast, although they had gotten up while I was out, and Amber already had the banana bread buttered. I arrived back just in time!

Mom wanted to see her Sister and Brother-in-Law today, so I packed up her oxygen, and off we went. She wanted to make a pit stop at the cemetery to see Pooh, Grandma, Grandpa, and Roger. She wasn't up to getting out of the car, so I told her I'd sit there as long as she needed. Naturally, she needed to know about the flower situation on the graves. I had to ensure all four had their appropriate baskets.

We got to Aunt Ruth's and she decided to leave her oxygen in the car. Uncle Bill was looking remarkable for what he'd recently endured. That made me awfully happy, because I can't imagine not having him around! Mom and Trude did their "Sister thing", and Mom was kind of cute. After hearing what all Aunt Ruth and Uncle Bill had been up to, she looked at Ruth with those sad, puppy dog eyes, and said, "Ruth, I think Will's replaced me. He's doing all of the running you and I used to do". It was sad but cute.

Amber and I cooked up a huge dinner for the family. Naturally, Mom had to be giving us directions on quantities, seasoning, temperatures, cook times, stirring motions, .etc... .but other than that, Amber and I had it covered! Deb, Christy, Julie, Aimee, and Dennis (Christie's new Beau) were over for dinner, and Mom and the girls worked their brain teasers until late into the evening. Mom was awfully tuckered out, but wouldn't leave all of her company.

October 12

I had to head back to Toronto today. I hated to leave Mom, but I'll be going back in a month. It doesn't get any easier. Mom goes back to see Dr. Albain on the 23rd to determine whether or not she'll do another round of chemo. That's what's keeping her going right now, and her attitude is extremely positive. She couldn't quit talking about Uncle Merrick's anointing and his apparent healing. It sounds like he no longer traces of cancer!

In my "one on one" time with Mom, she said Merrick was proof there's always hope for her. I told Mom that was why Aunt Naomi was hoping she was taking this time to become closer to God.

Believing in God myself, but being somewhat limited in actively living a true Christian life, I gave Mom my humble perspective. I told her it's not just a matter of praying, going to church, or for that matter, even being a member of the clergy. A person has to be willing to accept God in their life, and there has to be a true relationship with him, but God's there for anybody who's willing to believe in him. I realized I was attempting to present something I knew very little about, and stopped at that.

My "go home" trips are becoming more and more strenuous with the lack of stability, but as long as Mom's around, I'll be making the extra jog through Chicago. I treasure the additional time I've been given to be with her (we all do!!).

I caught a ride to O'Hare with Dianne and Aunt Ruth. They were going to visit Ruthie and her new Baby in Fort Worth. That was a treat in itself. This family stuff is pretty terrific! Amber -Grandma was pretty perky all day and felt good. Early evening her cheeks were red. I took her temp but she wasn't running a fever that was good.

October 13 (Fri)... Christy

I got to Grandma's after work. Amber said Grandma had rested during the day. Grandma ate a good dinner, rav's, and we chatted and worked a couple of puzzles. We had a good evening.

October 14 (Sat)

Grandma was feeling pretty good all day, it was nice outside, we sat on the deck, she "scooted" around the house checking things out and took a nap about a half hour during the afternoon. Then about 11 :30 pm she started having cramps and felt like she was going to vomit. She was laying down and I put a cold wash cloth on her forehead. After about an hour, she said she felt better and went to sleep and slept good thru the night.

October 15 (Sun)

Mom, Aunt Buggy, and Amber were all here today. Grandma felt really good, we worked on our puzzles Grandma loves her puzzles and she was in one of her "funny girl" moods! Mom made chili and apple crisp. Grandma had her own "special" dinner but she loved her apple crisp with milk on it!

October 16 (Mon)...Amber

Grandma had a few cramps today and was a little dizzy this afternoon but when Aunt Debbie got home from work, she said she felt like going to Walmart she hadn't been out for awhile! We went to Morris and Grandma was fine. She rested when we got home.

October 17 (Tues)

Granny was feeling pretty good today until later this afternoon. She started having cramp and this time she took a pain pill. She said that it helped and she felt better.

October 18 (Wed)

Grandma was tired today but said she felt good. Mom, Aimee, and Aunt Debbie were here and about 6:30 pm she started having cramps. She took a pain pill and rested.

Deb's NOTE: Barth we're trying to establish if the "cramping" Mom's having is linked to anything in particular that she's eating, but so far we can't find a pattern.

October 19 (Barth)

Mom goes to see Dr. Albain Monday. I'll go back through the last 3 weeks of notes and give her a "heads up" on Mom's status. Deb and I talked this AM, and we're both concerned about the continuous cramping. I'll send a note to everyone when I compose them for Dr. Albain.

October 21-22

Deb's Updates -Nothing noted in the notes "Granny had good days".

October 23

Mom's chemo day and you already have all the particulars. (see October 24 from Barth).

October 24

I may get Mom's "official" updates later today (I'm waiting on my secretary back in Seneca), but I'll quickly pass on what I learned from talking to Mom and Debbie last night. Briefly, Mom did chemo (at a more reduced dosage than last time) and they'll be doing all sorts of tests in November (MRI, Blood Tests, Bone Scan,CT, .etc). I sent the highlights (from the journal) of the time period in between chemo treatments to Dr. Albain, so she knew how often Mom's dizzy spells, large BM's, and cramping were.

When Dr. Albain asked Mom about her cramping, she said, "Oh, they're not very often and not that bad". Debbie was getting ready to correct her when Dr. Albain said, "Now Elsie, that's not what I read from Barth's notes". Then Mom fessed up, and said they were painful and lasted up to an hour. Dr. Albain said, "Elsie, when I ask you questions about your health, you need to be truthful to me". She asked how often Mom's stools are huge, and Mom said they're almost always ridiculously large. Dr. Albain didn't know if that was due to the cancer, chemo, other medications, or whatever, but she was surprised that the stool regimen she insisted on isn't alleviating that problem. She asked Mom to start drinking LOTS more water.

While doing her blood work, they had problems drawing blood which in itself is an indication of dehydration. She gave Mom her red blood cell shot along with a flu shot and a pneumonia shot. Mom said she'd been poked an awful lot today and her arms were a mess...but she was happy that she'd had her chemo.

The severe cramping and dizzy spells have Dr. Albain concerned, thus the MRI and bone scan.

Prior to leaving Mom said, "Dr. Albain, can I ask you another question?" She said, "What is it Elsie?" Mom asked, "Will I ever be able to be by myself again? I used to do so much running and I can't do anything now". Dr. Albain replied "It's too early to say anything for sure Elsie, but you won't ever get your water wings back". Mom began to cry.

When she was finishing up with her chemo, she told the nurse that she'd be back up in November, but she didn't think she was going to be able to have any more treatments. I heard about this comment and told Mom that she doesn't know that. I told her they may skip a week or two, but until we see results from all of the tests, nothing's been decided. And, we don't want her being too susceptible to simple things that could be detrimental. On one hand, we just want Mom to be comfortable, but on the other hand we selfishly want her to be here forever. And even though she's been told implicitly that she's not going to "get well", she's hanging on to hope! As long as that hope makes her smile and be positive... I'd love for it to continue. When the chemo is finally stopped, it will be her downfall.

Mom does all of her tests on two days in mid-November (13th and 15th??), and on the 20th she'll meet with Dr. Albain to discuss where we go from here. I told her I'll change my flight plans to be there with her on that day. I wasn't there, and don't know all of the details, so I asked Deb to put together notes from last night's trip. Once I receive those, I'll get them out.

Rest of Deb's updated NOTES: Granny's cheeks were flushed and she was a little shaky –felt pretty good though except she did have cramps in the late afternoon.

October 25

Granny had some cramps late morning, was a little shaky still from her chemo and tired.

October 26

Granny had cramps in the morning but felt good otherwise.

October 27

Grandma felt good, exercised with her PT, no cramps today and took an hour nap. (Mom had trouble sleeping Friday night -she was up at 1 :30 a.m., Buggy was there, they got up, had ice cream and worked a puzzle imagine that!!!)

October 29

………and we're off Christmas shopping! Even though Mom's been tired and not feeling well, shopping for Christmas is the one thing she's determined she's going to do herself!!!! But before we headed off for the "big city of Joliet" Mom asked if we could take a detour she wanted to go see Papa and we did.

At the mall, Mom whittled away at her list. With every gift she bought, a sparkle was in her eye and a smile on her lips and she'd say "1 want this to be a special Christmas". On the way home, Mom was tired, "a nice tired" she said, "but tired". We were chatting and she told me she wants to give each of us one special gift that we'll have forever from her …..to always remember her….. I told her she already has.

My Note (Barth) I talked to Mom today and she'd had a long day yesterday. Deb had taken her to Joliet Christmas shopping. I told her she should just forget about shopping this year, but she's already done except she said she needs to buy Debbie and Julie something nice. She said she wanted to buy all of us kids something nice so we'd have something to remember her by...I tried to tell her that just being our Mom is more than enough for all of us, but 1 could no longer talk. I told her I needed to hang up.

October 30

Mom was feeling pretty "frisky" today and was she hilarious!!! She came out with some of the funniest one liners that you better watch out Barth .she's upstaging you!!! Mom had a serious side today though too. She talked to Barth, Vic and Buggy and told them all this would more than likely be her last Christmas and the sad reality is she may be right. Physically, Mom was feeling good but she did have some cramping in the late afternoon that lasted for about an hour.

AMBER takes over: Grandma had some cramps around 730 PM. She took a pain pill and put a cold wash cloth on her head because she looked flush in the face. She felt better in half an hour.

October 31

Had a good day but around 730 she had more cramps. Took a pain pill.

November 1

Had cramps around 11 AM. Took a pain pill. They lasted about 15-20 minutes.

November 2-7

Good Days

November 8

Had cramps around 730. Lasted about 20 minutes. Took a pain pill and they subsided.

November 9-10

Nothing unusual.

November 11

Woke up at 2AM with cramps.

November 13

Went to get bone scan and CT today. Long day. Granny came home and took a nap.

November 15

Went to get an MRI today. She commented that she didn't remember her last MRI being so noisy and confining. We told her it was because when she had her last MRI, she didn't even remember her children. Granny did good!

November 17

Granny said she was having little pulses (twinges) where her abscess was.

November 19

I (Barth) flew in for Mom's big visit with Dr. Albain tomorrow. Her hair is coming back nice and thick, and white. We're not sure why it didn't come back in that "over-fifty-orange" tint she always seemed to have??? She wanted to meet me at O'Hare, and it took me a little bit by surprise. She looked GREAT! On the way back from the airport, Mom told Deb and I that over the last few days she's been experiencing a discomfort in her rib area. It was especially noticeable last night while she was lying in bed. Deb also told me that Mom's been more tired lately and is much more easily out of breath.

Moving Forward with Treatment

November 20

Today was Mom's big Doctor's visit. She was nervous all night about what the test results would show. As always, she was maintaining a very positive attitude. She had her usual blood work done prior to seeing Dr. Albain. This would determine her white counts to see if chemo could continue.

We met with Dr. Albain's nurse promptly at 0900. She took Mom's vitals:

• BP 150/80

• 97.2 temp

We won't mention weight per Mom's request, but suffice it to say, she's not missing a meal. Dr. Albain came in after about 10 minutes and she asked Mom how she'd been feeling. Mom told her about her ongoing cramping, her soreness in her ribs, her twinges where her abscess was, and some bruising on her upper back from an unknown origin (the girls just noticed the bruising 3 days ago). Dr. Albain thought the bruising might be a result of thin blood and was upset that Mom's coumadin checks were only being done once a month. We told her this was per a prescription from her office. She said she'd have Lisa fix it.

Dr. Albain then shared the results of the tests recently completed. The MRI (brain scan) was fine. Dr. Albain said the reason she'd requested this to be done was due to the dizzy spells Mom's experienced. The bone scan showed a few things, but Cathy (Dr. Albain) said at this point she really doesn't have anything to compare it to. This is Mom's first bone scan, but we will be doing another one later.

• The bone scan showed a spot on her right 2nd or 3rd rib and possibly another one on her 2nd lower rib. This could explain the discomfort she's experienced recently in her rib area??

• The abdominal CT showed the cancer is not progressive, but has an increased density.

• The chest CT showed the internal disease is stable, but there's more prominence under her shoulder blades.

• The lymph node under her right armpit is now showing up.

Overall, Dr. Albain was encouraged that Mom looked so good when she first saw her. She never seen her eyes looking so good. She suggested that we do more chemo, but asked for our concurrence. We agreed that as long as the cancer was being confined, and Mom was feeling benefits from the treatment, we would continue. She did want to discontinue the taxol (placlitaxel) and replace it with gemzar (Gemcitabine). Gemzar does not require the steroids prior to administration, but does require being administered 2 out of three weeks. So, Mom will have an extra trip every other week. She'll continue to get Carboplatin.

Gemzar does not require the steroids prior to administration, but does require being administered 2 out of three weeks. So, Mom will have an extra trip every other week. The topper of the whole day was the long, wet kiss Cathy laid on Mom to go with her goodbye hug??????????????? (Yuck!!!!)

We took Mom to the chemo area at 945 and it actually started at 1045. Mom's first question was whether or not the new chemo would affect her hair. To her delight, the answer was no. When Mom started chemo in July, she was receiving 100% dosage. In August, it changed to 75%. In September it changed to 66% and that's where it remains today.

November 21

Visited Aunt Ruth and Uncle Bill today and took a quick trip to Ottawa. She reprimanded me (as well as Mom is capable of) for sharing her weight with Aunt Ruth. I told her I share it with everyone in my daily journal. I told her it's not like she's just obese...there's an awful lot of cancer attributing to those pounds! We came home and Mom took a nap.

November 22

Amber, Mom, and I went to the cemetery today to put "saddles" on Grandma and Grandpa, Roger, and Pooh's tombstones. I asked her if she said her peace with Pooh, and she said she talked to everybody. Mom had discomfort in her rib area today late afternoon. She took a pain pill and 30-40 minutes later it subsided. I talked to Mom about her discomfort and we discussed that there might come a time when the Darvon isn't "doing the job" I asked her to be honest with the girls about her pain levels so we can keep it under control. I asked how often she feels discomfort and she said without the Darvon's at night, she wouldn't be able to sleep through the night.

We talked about her being with us for Christmas and beating all of the odds, and she said she was going to make it, but she probably won't be here for her birthday in April. I think she's fighting the cancer with all of her might to be here for Christmas, and we'll pray for additional time once we've reached the first plateau.

November 23

This is another "Biggy"! Today Mom is having a good portion of her family for Thanksgiving. Chris and Vicki are missing, but she's done a lot of planning for today. She's expecting her Christmas tree to go up today too!

Chemo Dosage

Mom's current chemo dosage at 66% is:

• 420 mg Carboplatin

• 1250 mg Gemcitabine (Gemzar)

Gemzar articles

GEMCITABINE (GEMZAR) MAY REDUCE TUMOR LOAD AND TUMOR

ASSOCIATED SYMPTOMS IN MALIGNANT PLEURAL MESOTHELIOMA.

H.G. Bischoff, C. Manegold, M. Knopp, J. Blatter, P. Drings. Thoraxklinik Heidelberg, Germany; DKFZ Heidelberg, Germany; Lilly Deutschland GmbH, Bad Homburg, Germany.

For patients with diffuse malignant pleural mesothelioma, the therapeutic possibilities continue to be limited. The most frequently used chemotherapy has included anthracyclines and cisplatin, where the response rates have ranged from 10% to 20%.

New cytotoxic drugs, such as taxanes or gemcitabine are therefore being tested in clinical trials. In our hospital 23 patients with a histological diagnosis and with progressive disease (female: 1, male: 22; age: median 61 years, range: 49--72 years; histology: epidermoidal 22, mixed 1), stage less than or equal to 2  (Butchard); no prior radio-, no prior chemotherapy; performance status  less than or equal to  2 were treated with gemcitabine between May 1996 and November 1997.

Gemcitabine at a dose of 1,250 mg/m2 was given on day 1, 8, 15 every 28 days for a maximum of 6 cycles. Tumor extent prior to chemotherapy was determined by X -ray,

CT -scan or MR!. So far, 5 of 16 evaluable patients (treatment duration greater than or equal to 2 cycles) showed objective tumor regression (1 CR, 4PR) and an additional 7 patients showed no change with symptom improvement (pain, dyspnea) and/or stabilization of the performance status.

Our observation thus confirms the EORTC phase II study results of single agent gemcitabine [van Meerbeeck et al., Lung Cancer 1997, 18(suppl l), 17, abstr 57], and underlines the great value of gemcitabine in the palliative treatment of advanced solid neoplasms. It is recommended that gemcitabine be evaluated further in combination with agents such as cisplatin in this malignant disease.

'Gentle' chemo for lung cancer now approved -By Fiona Hendry

Toronto -A new chemotherapy agent with a mild side effect profile was recently approved by Health Canada to treat advanced stages of lung cancer. Gemcitabine hydrochloride (Gemzar), developed by Eli Lilly and Company, is indicated for patients with advanced nonsmall-celllung cancer (NSCLC), a disease comprising 75% of all lung cancer cases.

It is administered intravenously over 30-minute periods, and is given once a week for three weeks, followed by a one-week rest. This cycle is repeated. Gemcitabine hydrochloride works by inhibiting the normal process of cell replication, resulting in cell death. Worldwide clinical trials have shown it to have a response rate of about 20%; "responders" were defined as patients who exhibited a decrease in tumor size of at least 50%.

5,000 patients

More than 150 clinical trials of the drug involving 5,000 patients were conducted. Approximately 500 Canadian patients have been studied using gemcitabine hydrochloride. Seventy per cent of patients in phase II clinical trials gained weight or demonstrated stable weight, and 22% reduced their use of analgesics. Median survival of patients on gemcitabine hydrochloride ranged from 8.1 months to 9.2 months. When used in combination with other chemotherapy agents, 50% of patients were alive at 12 months.

"We're excited about these response rates, as this disease has traditionally not responded well to chemotherapy," said Dr. Frances Shepherd, director for medical oncology at The Toronto Hospital. "Most anticancer agents used alone in advanced NSCLC have failed to yield response rates of more than 15%. Gemzar provides potential advantages over existing treatment because of its combination of antitumor activity and tolerability. Gemcitabine hydrochloride also boasts a low side effect profile, said Dr. Shepherd.

It causes little to no hair loss, mild to moderate nausea and vomiting, and limited suppression of bone marrow activity. Side effects, when they've occurred, have been shown to be easily managed and unlikely to require hospitalization. However, vinorelbine tartrate (Navelbine), a drug approved by Health Canada for NSCLC in 1994, boasts response rates similar to, and in some cases higher than, gemcitabine hydrochloride, according to its manufacturer, Glaxo Wellcome. Vinorelbine tartrate as a single agent has shown objective response rates of 30% in phase II studies. In combination with cisplatin, it has been shown to achieve response rates of up to 43%, achieve a median survival time of up to 40 weeks, and improve survival rates by 25% over vindesine/cisplatin with less nausea, vomiting and neurotoxicity.

"The credentials of vinorelbine plus cisplatin are known, they have modest acquisition costs, and they have a better toxicity profile than another commonly used chemotherapy regimen of vindesine plus cisplatin," said Dr. Nevin Murray, medical oncologist and chairman of the lung tumor group with the British Columbia Cancer Agency. "In B.C., we feel that vinorelbine plus cisplatin has the best track record." However, he added, "new innovations are always welcome, and certainly gemcitabine hydrochloride looks very promising, although currently only phase I and phase II studies have been done."

Patients with stage IV disease who have a good performance status benefit from chemotherapy, usually with a platinum-based regimen.[lO] Many new drugs that are active against NSCLC are available. These include the taxoids (paclitaxel [Taxol], docetaxel [TaxotereD, vinorelbine (Navelbine), the camptothecins (irinotecan [Camptosar], topotecan [Hycamptin]), and gemcitabine (Gemzar). Combinations using many of these drugs produce a I-year survival rate of greater than 40%.

November 24

We took Amber home...nothing new with Mom.

November 25

Took Mom to Oakbrook to do her final Christmas shopping today. It was a long day. Mom had cramps early evening and took a pain pill.

November 26

Mom had cramps again today. Took a pain pill and they subsided.

November27-December3

Nothing to report.

December 4

Had blood drawn at Ottawa and then took Granny to see Aunt Ruth.

December 5

Granny had a good day but noticed a hard spot under her left breast. She said it doesn't hurt or bother her. Coumadin said to keep her levels the same.

December 6

Lisa called from Loyola and said Granny's white counts were down to 200 and she needed them to be 700 for chemo. She said they might come back up by the 11th.

December 8

Granny had cramping today around 4 PM. Took a pain pill and had cramps again around 7 PM.

December 9

Took Granny to the Mall and Kohls. Had a good day.

December 11

Missed chemo at Loyola due to heavy snowfall.

December 15

Mom was wobbly Friday night but a big bowl of ice cream and popcorn took care of that problem.

December 16

We went to Saks (Super Walmart) for a couple of hours and finished up her last minute "have to haves" for Christmas. Mom was tuckered out but was anxious to have her treatment on Tuesday.

December 17

Mom made candy today. Took her from 1030 to 230 PM but she got it done...then napped for three hours. Had another little spell, but you can't keep her down for long.

December 18

Granny had a good day but she said her groin area felt a little uncomfortable for a while.

December 19

Granny had a good day but didn't make it to chemo at Loyola due to icy road conditions on Rte 55 being too bad.

December 22

Took Mom to Loyola for chemo. Her vitals were BP 110/60, temp was 98.6 and Dr. Albain was happy to see she was sustaining her weight. We won't mention figures. Dr. Albain said "You look Great Elsie". Then she asked, "So girls, tell me what's been going on. I haven't gotten any emails from Barth". Amber told her about the lump under her breast and after examining her, Dr. Albain said, "That's just part of your Grandma. It's her rib". Amber also told her about her "wobbly spells". Dr. Albain said it may be time to do an MR!, and we informed her that she had just had one, and Dr. Albain was a bit embarrassed for not having read the charts.

During the exam, Dr. Albain was feeling her back area where the CT's had shown a new cancerous area during the previous visit, and Mom winced. Amber asked if she could take fiber tablets in lieu of Citricil and Dr. Albain said that would be fine. Amber then told her about Mom's groin pain, but Dr. DeWitt (Mom) told Dr. Albain that it was nothing because she had the problem before hip replacements, but Dr. Albain asked if she had the pains since the hip surgery and Mom said no, it just started again recently. Dr. Albain asked Mom how she'd been feeling, and Mom said good, except she'd been very tired. Dr. DeWitt once again did a self-diagnosis and said it was due to the chemo.

Afterwards, Deb treated her to Al's Steakhouse in Joliet. She woofed down her lobster tail and was clowning with the girls during dinner to the point of being in tears. Had cramps on the way home, which Dr. Williamson and Dr. Surges diagnosed as a result of the rich food and the butter. She was very "out of breath" all day and was having difficulty breathing.

December 23

I (Barth) flew in this afternoon and my Limo driver (Deb) picked me up at the airport. This morning, Deb asked Mom how she felt, and she said she felt good, but was extremely tired. She was waiting for us when we got home from the airport and as usual, was worried because we were extremely delayed due to road conditions and traffic. Some things never change.

I sent Dr. Albain the following email today:

Dr. Albain,

Due to recent inclimate weather and road conditions, Mom's chemo regimen has been disrupted on a couple of occasions. Aside from this, the 3 plus hour trek to and from Chicago adds to Mom's already fatigued state. For that reason, I'd like to propose a possible solution???? Would it be feasible to have her chemo treatments done at the Ottawa Community Hospital under the direction of Dr. Hantel of the Loyola Staff?

We rely heavily on your expertise, and would definitely want you to maintain overall control of her treatments. Our experience with CHO is that they are not competent enough to do the testing necessary to monitor her ongoing progress (.i.e.. CT's, MRI's, .etc.). So we would expect Dr. Hantel to keep you apprised of her treatments, and would like to continue doing the progress appointments/treatments at Loyola.

I've already discussed this with Mom, and as long as you continue to be her primary physician, she's comfortable with this proposal. What do you think? We respect your opinion and will follow your advice!

Best Regards,

Barth

December 24

I changed my flight reservations back to Toronto today so I can stay through Saturday. I'll drive Amber and Mom to Loyola for treatments on Friday. Mom was having an awful lot of discomfort today in her back area. She took a couple of pain pills, but still seemed uncomfortable.

Aunt Ruth and Bonny visited, and Mom was elated. She loves getting company.

Christmas 2000

Here we are!!! We've reached the milestone nobody thought was possible back in April. This is absolutely the best Christmas ever! Mom's as excited as a little child, but once again, her pain level is noticeable. She took pain pills throughout the day. She's had some very long days, but doesn't want to miss a thing, so when she does go to her bedroom to lay down, the stays are short-lived. The skin on the entire length of the right side of her body (front and back) is extremely puffy and sensitive to the touch. She jumps when anyone attempts to massage that area.

We took her to John and Nancy's house (Debbie's John) so Deb could drop off presents and so Mom could see Nancy. John's brother in law (a resident physician at Iowa State) was visiting from Iowa. He had "packed" Mom's fistula for her on a prior occasion. As soon as we got in the door, Mom said, "Where's the Doctor?". She asked him if the pain pills should reduce soreness as well as pain and he said they should. Then she agreed she may need something stronger.

Aunt Ruth, Dianne, and Ruthie dropped by with Shelby (Ruthie's pride and joy). Once again, Mom was thrilled to have her family surround her. Every morning and night she'll tell me, "Get my sister on the phone. I need to talk to my Sister". I'll ask which one, and she'll say, "Naomi's in Washington DC, so I'll talk to Ruth". Then she'll retaliate with, "We love all of our Brothers and Sisters equally, but Ruth and I never moved away. Throughout her life, Aunt Ruth has always been right at her side on the rare occasions when Mom needed support. There's no secret about their love, commitment, and admiration for each other. It's very touching to see. Terry and Aja stopped by to see Mom in the evening.

We discussed going Mall Crawling in the morning, and Mom said she might just stay home so we wouldn't have to push her around in her wheel chair. We asked her if she really wanted to stay and she said she'd really like to go with. She said normally this is the time when she would start buying for next year. I told her not to worry about shopping right now. I said when she starts feeling better, we'll take her shopping and she'll just have to spend a little more. She thought that was a good idea. She's not really up to shopping anyway, but enjoys tagging along to watch everyone else. She's restricted to the house enough.

We got up at the crack of dawn this morning to hit Orlan Park for the "After Christmas Shopping Specials".

We bundled Mom up in her warm coat, scarf, and hat and headed on the way. She's having a much harder time getting in and out of the car today.

Early afternoon, Mom said she might just stay home from now on. This was a tiring trip for her and she was feeling every bump in the road. I can't even fathom the degree of pain she must be suffering.

 She took a pain pill in the morning when she got out of bed, and took another around noon. They just don't seem to be doing the trick anymore.

Mom had a lot of soreness and took several pain pills today. Scott and Julie came down today. Scott told Mom about an article in the "Chicago" magazine (January's issue) on Dr. Albain.

The title of the article was "TOP Doctors". It reiterated her very impressive credentials as one of the Country's top Oncologists. Naturally, Mom sent Amber off to Barnes and Noble to buy a copy.

December 28

More soreness. Doubled her dosage on her pain pills.

December 29

Left early to take Mom to Loyola today. The roads were very icy once again. Dr. Albain was on vacation, so after she had blood drawn, Lisa followed the instructions Dr. Albain left behind for her chemo treatment. Mom's white counts were only 2.4, so the dosage was cut to 625 mg of Gemzar (33%). Last week I found out her dosage was 1250 mg of Gemzar and 420 mg of Carboplatin. Both were a 66% dosage.

I told Lisa about Mom's increased levels of pain/soreness/discomfort, and suggested we were at a point of going to a stronger pain reliever. Lisa said she'd get a hold of Dr. Albain to get the prescription called in, but Dr. DeWitt told Lisa she could make it another week with the pills she already has.

Mom went all day without pain pills, but was very out of breath. Once we returned home, she found out her Baby Sister (Naomi) and Uncle Merrick were in town from North Carolina. So, prior to settling in, we headed out for Blue's house. She was thrilled because not only were Aunt Naomi and Uncle Merrick there, but she also visited with Uncle Glen, Aunt Mary Lou, Ruthie, Mark, (& Shelby), Uncle Bill, Aunt Ruth, Bonny, and Terry!

By the time we arrived back at Mom's, she was very out of breath and needed a double dosage of pain pills. She, Debbie, and I settled in for a movie in her bedroom and had a restful night. I'll be heading back to Toronto tomorrow morning feeling I've just spent my best Christmas ever!

January 1, 2001

January 1-4 Good days.

January 3

Granny started taking her pain pills every 4 hrs. per Dr. Albain's instructions.

January 5

Started feeling nauseous wash cloth and had her lie down. She was better after 1 hour.

January 6-7

Tissie's weekend.. .nothing to report.

January 9

Reverend Clark and Sid Greer came by today to anoint Mom per her request.

January 10

Dianne picked Chris up at O'Hare today. Mom was excited to see him.

January 11

Today was Mom's chemo day at Loyola. Chris and Amber were the chauffeurs. She did the usual blood work and then Lisa took her vitals:

BP -132/50

Weight -can't discuss!!!!!

Pulse -100

Temp -97.7

Dr. Albain did an exam and told Mom how good she looked. She scheduled her for the next chemo treatment and for the following tests:

• Blood tests and chemo (Gemzar only) -Jan 18

• CT, Bone Scan, & Blood work -January 24

• Dr. Albain consultation -Feb 1

Mom's white blood counts were 3.9. For a full dosage, they need to be between 4 and 10. She received 50% of her full dosage and she was given 20mg of her pre-med.

Chemotherapy Dosage Calculations

January 12

Mom had her first visit with Dr. Steinert in Seneca. He's Aunt Ruth and Uncle Bill's family physician. We all decided Mom needed to have someone in the immediate area in the event of anything not cancer related. He reviewed Moms medical history and took notes while she updated him on her cancer. He didn't do any sort of physical because Dr. Albain's doing so regularly. By looking at her eyes and hands, he said that she is obviously anemic.

January 13

Being the "first born", Chris was waited on hand over foot by Mom. She did spot checks to ensure his laundry was being promptly cleaned, got up at 1 AM to locate items he had mis-placed, and spoiled him rotten during his entire stay. He had good intentions of making Mom's breakfast so Amber could sleep in, but blew up the oatmeal in the microwave. I think the only requirement is to add water.

All kidding aside, Chris is not in great health himself. He'll be doing by-pass surgery on his "good" leg very near term. He's already had two surgeries on his bad leg. Once this occurs, he'll be incapacitated for a few months. He wants to schedule the surgery around Mom's illness, but the years of fighting diabetes have taken their toll. It was very important to him to be able to spend time with Mom before committing to the operation.

Mom was nauseous today. Julie was counting medications and realized that Friday, Mom had missed taking the pill that prevents nausea after chemo. She's been napping a lot, but when I ask if she's tired, she says, "I'm always tired". Julie replaced Amber for the long weekend.

January 14

Mom and Julie took Chris to O'Hare this morning.

January 15 (Martin Luther Vandeross/King Day)

I talked to Mom and Julie numerous times today trying to get all of the chemo information. We're going to request a printout of this data starting at the onset of her treatments back in the July.

We know that in August, the dosage changed from 100% to 75%. Then in September it was lowered again to 66%. On December 29th she was down to 33%. Now, on January 11th, she was back up to 50% for both Gemzar and Carboplatin.. ...so, I would very much like to verify my notes to see if they agree with hospital records.

NOTE: On December 29th, her white counts were only 2.4! This is the first time they've ever come up!

Mom and Buggy were getting ready to do a Wal-Mart trip, so I was asked to quit calling for a while.

January 15-17

Mom has been extremely shaky and out of breath since her chemo treatment on the 11^th. She's also been more flushed than normal. She's usually only flush for a couple of days following chemo, but Deb says it's lasting longer now.

January 18

Deb and Amber took Mom for her chemo today. It was her "Gemzar only" treatment. She asked the nurse if the chemo would be causing her to be so out of breath recently, and the nurse suggested she mention it to Dr. Albain. She asked Mom if she's been doing anything stressful to cause breathing difficulties, and told her she notices it even when she's lying down.

I had asked the Girls to get a copy of Mom's chemo dosages since she started treatment in July. We now have the records, and here's a breakdown of the dosages.

Chemotherapy Dosages

January 19

Mom was lying in bed poking her tummy and said she needs to ask Dr. Albain why it's so hard. She said she used to be able to poke it and feel the excess fat, but now it's just hard...but it's not causing her any discomfort.

January 20

I talked to Mom and Deb this morning at 810 Chicago time. When Amber is there, they usually sleep in until 0900, but knowing Deb was there, I called early. Mom answered and I asked why she was up so early. She said she woke up around 0130 and never really did get back to sleep after that. She has pills Dr. Albain prescribed to help her with sleeping after chemo, but she said they make her goofy, and she doesn't want to be goofy???

Mom and Deb will be heading to O'Hare today to pick up Vicki. She'll be staying two weeks, and then Julie will be taking the following week off to give Amber some relief.

Vicki takes over: -(To avoid hand cramping, I'll be editing Vicki's Thesis):

Vicki noted how tired Mom looks, but she was amazed how well Mom's getting around

compared to when she left in August. Mom's ankles have been swelling more than normal, and are puffy today. She rested when we got home.

January 21

Ankles still swollen.

January 22

Ankles swollen.. .napped early afternoon.

January 23

At 830, Mom's feet and ankles were very swollen from the toes up to the knees. The right side is the worst. Put her feet on two pillows and took a contrast at bedtime in preparation for scans tomorrow. She had a sneezing spell before going to sleep (sneezed about 20 times).

January 24

Another day at Loyola. Had blood drawn, and did a CT and a bone scan. She tolerated all well. This morning, she coughed up two marble sized chunks. One was mostly red blood, and the other was pink tinged. Afterwards her throat was burning. She grew more hoarse as the day went on. We noticed she now has several bruises (2nd toe on right foot, top of right leg, and 2 places on right arm). At 523PM, she laid down and said she was too tired to talk to anyone if they called.

January 25

Slept with feet up on wedge and two pillows for leg support. Both ankles swollen, but not nearly as bad as yesterday. Tired all day.

January 26

Had to go to Ottawa to get pro time checked. Loyola forgot it. Lisa (Dr. Albain's nurse) called and said Mom's hemoglobin is 8.5 (supposed to be 9 or more). She was calling to see if it was having an effect on Mom. We told her about the swelling, spitting up, and that she's short of breath. Lisa talked to Dr. Albain and called back to say Mom needs to come to Loyola Monday for a CBC. In the interim, she told Mom to eat red meat and beets to help bring the hemoglobin up. She said to keep her feet raised for the swelling, and if the shortness of breath worsened, to bring her to the ER. They're thinking it could be due to a blood clot or Mom might need a transfusion. They'll know for sure when they do the CBC.

January 27

Went to WalMart this morning and Mom took a nap when we got home. At 2PM she was complaining about being cold. At supper time she was flushing (cheeks and left ear) and had a slight temp 99.8. Lying down at 7PM, feet and ankles are still pretty swollen, and shortness of breath is still a problem. She coughed all night long.

January 28

Slept in this morning and had to be woken up. Slept off and on all day. At 11 PM, ankles swollen, noticeable shortness of breath, and temp is 99.

January 29

Mom coughed most of the night, but this was uneventful. We're waiting to get word from Lisa for the time of our appointment. Mom has what looks like a cold sore or fever blister on her upper lip. I think it's from eating oranges (her Gemzar paperwork says to avoid citrus drinks).

We took her to Loyola for her Doppler tests and got back home at 510 PM. The Doppler tests showed no blood clots, but lots of fluid. We go back to Loyola on Thursday to see Dr. Albain.

January 30

Coughed throughout the night again. It's getting harder for her to maneuver in and out of bed, and up and down from the toilet. The swelling is part of it. Also, her right groin muscle has been hurting. When she woke up at 930, she said she had a headache. She thought it was from coughing. She's depressed today. Crying during and after her shower. I told her she's weak from her low hemoglobin, and from coughing for the past 3 nights. She's not resting. She said her right arm is hurting. I asked if today was the first day that it began hurting, and she said, "No, it's been hurting for a while. It's not really hurting, but feeling heavy and hard to lift". I told her that she needs to tell us these things. When I asked her to be specific, she said it hurts from her shoulder to her elbow.

At 800 PM, temp was 100.2. At 1026, it was 100.3. Getting in bed after using the bathroom, she couldn't quite get her breath. Lasted about a minute.

January 31

At 8 AM, temp was 99.2. After using restroom and getting back in bed, her breathing sounded abnormal. I checked her with a stethoscope and there's a whistling or wheezing sound in her right lung. Called Lisa to let her know and she'll call back. The sound stopped after 15 minutes. Lisa called back and is ordering an antibiotic to take through the night. We'll see Dr. Albain in the morning. Her other option is to go to ER today, and Mom opted to try the antibiotic.

Back to the Emergency Room

February 1

Today was Mom's scheduled visit with Dr. Albain. Blood was drawn at 1030 for CBC. Saw Dr. Albain at 1130. The CT's show the cancer is rock stable (not spreading).
 

The bone scans show less prominence in the rib area than the previous scans. Her lungs are clear. Dr. Albain said the swelling is terrible. She's not positive, but it could be an indication of the start of congestive heart failure. Blood counts are extremely low and she positively needs a transfusion. She said she needs to be admitted. If she comes through this, Dr. Albain wants to look at changing the chemo regimen. She says, "This one may have worn out it's welcome".

First they sent her to ER for an x-ray to see why the pain is in the right arm. First they did an MRI for her brain, an x-ray of her shoulder, an echocardiogram to check for fluid around her heart, and a chest x-ray. While looking through Mom's charts, the girls found an entry that said the cancer had metastasized to her breast. We had never been told this by anyone!

February 2

Chest x-ray at 230 AM. Poor appetite. She was given 2 pints of blood for a transfusion. She was also given Lasex for edema. Measuring her input and output, they decided she needs to drink more. She was visited by the Neurologist (Dr. Freedom and Dr. Conor). They said the mild neuropathy in her feet could be due to the chemo. The brain scan showed a swollen vessel (probably congenital). They didn't think there was a foreseeable problem with it.

February 3

Not much to report. Mom received 2 pints of fresh blood. Made all the difference in the world for her energy. She sounds much better and can even lift her arm slightly. They did more testing yesterday and will be doing another MRI on Monday. The doctors haven't commented on what's going on yet. She's a mystery. When the girls asked about results from the EKG, they were told "We're concentrating on her arm and shoulder right now, and will address one thing at a time".

When I talked to her this morning she sounded fairly good. I talked to her again this afternoon and she just wants to go home. But, she agreed with me that it would be sort of nice to understand what's going on first. She a bit disappointed that testing won't resume until Monday. I'll update everyone then!

February 4

Her arm use is continuing to improve today, and the swelling has gone down.

At 1010 I, (Barth) talked to Mom. The doctor came in and had her lift her arm and leg and said there's no reason to keep her. She didn't argue, and will be released this morning! Dr. Leischner called Deb at home before Vicki and Julie got to Loyola. He asked if she had any questions before releasing Mom. Following is what Debbie was told.

• Mom lost 15 pounds in 2 days (all water)

• The swelling is being caused by excess water

• She has underlying organ involvement

• She has chronic de-conditioning

• She has a gastro-intestinalleakage (she's bleeding internally) which he says is a slow process

• He said, "Her heart is not in the best shape, and her lungs, well you know".

• Her left ventricle is pumping

• She may be experiencing kidney dysfunction

• She could be prescribed a diahretic for the water, but that's Dr. Albain's call.

Once the girls arrived at Loyola, they did some additional tests prior to releasing her. They took blood to re-check her B 12 potassium and magnesium levels. A previous test showed her potassium to be slightly low. They also checked her urine. She showed a urinary track infection. They sent her home with a prescription for Clindamycin. They'll call and tell us to discontinue it if the culture comes back negative.

They also gave her a shot of Heparin to raise her coumadin level. We need to take her to Ottawa in the morning for more blood work. We'll continue her meds at home.

Her thyroid is slightly elevated but is probably not a problem. But, it could attribute to the anemia. The other blood levels that were low prior to her transfusion were probably lost through her stool gradually. Dr. Leischner said, "We haven't really done anything for you, other than eliminating fluid with the Lasix and the transfusion to help the anemia".

We called Dr. Albain to schedule her next visit and to see about setting up another MRI as an outpatient. Mom spent the afternoon and evening in bed. At 500 PM, she complained about a headache. Gave her 2 Darvon and she napped for an hour. When she woke up, she complained about a stiff neck. Started on Clindamycin at 0600 PM. Had it again at bedtime.

February 5

Mom was up 3 times during the night to go potty. She slept in until 930 and was complaining of a stiff neck on her right side. When she sits up, her right side is lower. She seems to be weaker on that side. Upon getting up to go to the bathroom, she felt light-headed on three occasions.

February 6

Nothing new today.

February 7

Right ankle and foot still swollen (more so than the left). Not nearly as bad as when hospitalized (not going as high as the calf or knee). Temp of 100.2 before bed.

February 8

Normal temp when getting up to go to Loyola. During Dr. Albain's visit, they did a CBC, and an MRI of her shoulder. Dr. Albain said we'd be taking a month off from chemo. She'll set up a CT later. Dr. Albain attributes the need for the transfusion to chemo's wear and tear on the body. She says there's no entry on Mom's charts of bleeding from the intestines.

Got home at 315 PM and Mom slept until 730. She had a Valium prior to her MRI for claustrophobia. Temp was 100.3 at 730. Got two new meds (K-Dur for potassium, and Synthroid (Levothyroxine) for Hypothyroidain. We were told in the hospital that Mom's thyroid was only slightly elevated and would pose no problem. Temp at 920 was 100.9. Applied a cold washcloth to her forehead and gave her 1 Ibuprofen (200 mg). It was 99.8 at 1050.

February 9

Slept until 900. Took Synthroid and went back to sleep for another hour. Temp 99.0. Bed was wet from sweat. Up at 1000 for breakfast. Temp 99.3. Called Home Health to order PT per Dr. Albain's prescription to prevent frozen shoulder. Breathless today..even sitting. Feet swollen. Right one worse than yesterday. Feeling tired. Didn't want to shower and really didn't want hair washed. We did it hurriedly and after her shower temp was 100.8. Gave her 1 Ibuprofen. Temp at 7 PM was 100.3. At 830 PM it was 100.8. Didn't give her Clindamycin due to shortness of breath. At 947 PM temp was 101. Gave her 2 Ibuprofen.

February 10

Up twice during the night. Changed her bed due to sweating. Very short of breath. Her left lung sounds clear, but she's noticeably short of breath. We didn't give her Clindamycin again this morning. We're waiting to see if this makes a difference. No temp this morning.

1321 -called Dr. Albain, and she asked Vicki if she realized she was interrupting her at home. Vicki and I decided she's in the wrong profession for a 9-5 job. At any rate, Dr. Albain was upset because nobody had called to tell her Mom was running a temp. Vicki explained to her that Mom doesn't want her to be called for everything. Vicki told her that they had decided to stop Mom's antibiotic to see if it might be causing some of the things Mom's experiencing. Kathy didn't show interest one way or the other.

Dr. Albain told Vicki that she couldn't work on her over the phone so she could either try

increasing her oxygen, or bring her to emergency. They tried the higher 02 level first (raised to 6...high as machine will go!), but Mom was still experiencing a great deal of difficulty. So at 340 PM, Mom wanted to go to Loyola to be checked out.

Admitted for the 5th time

When we first arrived, Mom needed to use the facilities. So we stopped an attendant and asked for 02. He gave us the tank from his cart, and said he thought it was full. We took Mom to the restroom, and she immediately began gasping for air. She was turning gray and could not catch her breath. The 02 tank was empty! Good start!

February 11

They we took her to emergency and the first doctor examined her and then called Dr. Leischner over. He did some more examination and called Dr. Albain to fill her in. They were trying to find the x-rays from last week, but weren't having any luck. Come to find out, her good lung (left) was now filled with fluid. They needed the previous x-rays to see if it had worsened. We had never been told about her good lung having problems prior to this! The girls asked how much fluid was in the lung and the answer was just as much as the bad lung.

They told Mom that if they thought it was pneumonia, they would have to admit her, but ifit was not, she'd be able to go home. She said, "Go home, I can't breathe!". The doctor talked to the girls away from Mom and told them her EKG from last week was OK, but the front of her heart is performing correctly, but the backside has a problem. This is the cause of the edema in her legs and ankles. They asked what kind of diarrheic Dr. Albain had prescribed, and were surprised when the girls told him she had not prescribed anything because the antibiotic already contained a diarrheic.

They said one possibility to give Mom assistance in breathing was to tap her good lung to drain the fluid...but, they can't do this while she's on coumadin. The two doctors went out in the hall and Deb overheard them saying they due to the flushing of her face and neck, along with everything else, they thought this was the beginning of Superior Vena Cava. This usually has a rapid onset with the hearts ability to pump blood along with breathing problems. In Stage 4 cancer patients, if the onset is rapid, often within a few days or weeks is fatal.

February 12

I (Barth) flew back to Chicago today. I took a taxi to Loyola and saw Mom for the first time at noon. The girls were all there along with Amber and Aimee. Mom looked awful. It was so devastating to see her decline that I couldn't help but cry. Her eyes were glassy, her skin tone was yellowish-gray, and she was wearing an oxygen mask (set at 15). Her mask was filling with condensation every time she took a breath. Her breathing was definitely labored. I was thankful I'd come when I did! They were still treating her as if she had pneumonia (antibiotics). I held her hand and she could barely talk. They now have a catheter in place.

Mom's temp during the night was 102. She had a really bad night. When Dr. Leischner saw her in the morning he was extremely upset when he found out Mom had been unable to breathe the entire night. The nurses would come when Mom rang her button, but all they could do was to keep raising the 02 level. When they max'ed out at 15, they were at a loss to do anything else. Mom said, "They did all they could do", and Dr. Leischner said, "I'm not trying to place blame on anybody, but you've been in distress all night, and a doctor should have been called. There are things we can do to assist in your breathing". He then asked who the nurse on duty was.

The girls said Mom has had very little appetite the past several days. Especially while in the hospital. Starting in the morning, the doctors have Mom doing breathing exercises with medication in her mask. Dr. Fisher (Dr. Albain's boss) came by to check on Mom while I was at the Cardinal Bernadine Center trying to see what we needed to do to get copies of Mom's current medical records. There have been too many discrepancies between what Dr. Albain tells us in Mom's presence, and what the Doctors actually seeing Mom are telling us.

Also, we keep hearing about entries in her charts that we're not being told about. I talked to Lisa (Dr. Albain's nurse), and she gave me the paperwork to get the records. When Mary Fitzgerald was still working at Loyola, all we had to do was ask and we received! Dr. Fisher said they aren't sure why the fluid is building up, or why she's running a fever. He said it may be an infection. They'll change her to a stronger antibiotic (Roxephren??). She needed a potassium pill to replace what's lost from the Lasix. She also received potassium chloride via the IV.

Dr. Leischner came back to see Mom. He said they were waiting on a Pulmanologist to see Mom. During the day, Mom's temp was 101-102.She's being treated with an antibiotic for her fever and her urinary infection. At around 2 PM the nurse came in and gave Mom her 2nd breathing exercise (nebulizer). After she finished, Mom began to cough. She had something in her throat, but couldn't get it up. After coughing for several minutes, she began to look worried, and she could not catch her breath. We rang her buzzer, and Mom told the nurse that she couldn't breathe. She had to repeat herself because of the mask. We waited several seconds and looked down the hall and nobody was coming. Vicki ran down to the nurse's station and saw Dr. Leischner. She interrupted his conversation and told him that Mom couldn't breathe. The nurses were still all sitting down, and one nurse said, "Oh, is that what she was saying?"

He came right down and looked her over. He told her to concentrate on breathing and nothing else. He told her he didn't even want to try to talk, just to nod her head. He then ordered morphine. He said for now he was going to discontinue the breathing treatments. The nurse came with the morphine, but when she attempted to inject it into the IV after flushing it, the liquid went all over Mom's arm. The IV had blown. Another nurse came in to start another IV in Mom's other hand. Finding good veins is becoming a problem. Mom was now concerned about overdosing, but when it was obvious that she wasn't seeing any improvement in her breathing, very little of the morphine made it's way to her body. Dr. Leischner came back in to see if Mom was getting any relief, and when he found out about the IV fiasco, he ordered another dosage of morphine. He assured Mom that he wouldn't let her overdose!

The Pulmanologist (Dr. Garrity) came in at 330 PM. He told us that they needed to get a sample of the fluid in her left lung to see if it was infected or otherwise. He explained that if it was infected, the quickest method to treat it was to insert a chest tube to drain the fluid. I told him that Mom was absolutely against having another chest tube due to her previous experience.

He assured her that he would do his best to prevent anything like what happened at Ottawa from occurring here. I asked if they could derive the same benefit by using a syringe to drain the fluid, and he said that was a possibility. He also said they might be able to insert a small chest tube, and have it removed within a day or two. He wanted to draw a sample first, and said within an hour they could have test results back to see if they needed to actually do a tube. They wanted to wait another half hour to give the morphine a chance to work. At 4Pm her BP was 90/59 and temp was 102. Heart rate was 115. While tapping on her lungs from the back, Dr. Garrity said they both sounded "dull".

Around 500 PM, the doctors came back to draw the fluid. They made two small incisions on her back. Dr. Garrity used a needle to withdraw 600 cc of fluid from her left (good) lung. He did this procedure right in the room. Mom sat on the side of the bed and leaned over the table. Before starting, he told Mom he needed to know ifshe felt pressure at any time or felt a need to cough. This would be an indication that he needed to stop. It means the chest is expanding, and there could be a risk of swelling and/or infection. Once he began, he said the fluid appeared to be all blood. This means it's not a simple infection. Mom's expression changed during the procedure, and Vicki asked if she was OK. She said she felt pressure in her chest area. Dr. Garrity started to pull the syringe out and Mom started to cough. He told her that was a sign he was looking for and he was stopping the procedure and withdrawing the syringe. He said he could probably get a liter

and a half of fluid, but she was showing signs that he should stop. Once he withdrew the syringe, Mom still felt pressure. He said this could last a little while (an hour or so). Also, he said if the wound site gets bloody, it's due to the coumadin and he said to put a little pressure on it to get the bleeding to stop. He said they would do tests on the fluid and he should have the results back in an hour (7 PM).

February 13 (Final 2 Days)

We arrived at the hospital at 905 this morning and Mom was sleeping. She heard us and woke up, but was very withdrawn. We asked how she slept and she said maybe a little better, but she's having breathing problems this morning. The nurse came in and said they had given her morphine at 0700 and again at 0800. At 0905, she's still having problems. She asked for more morphine and the nurse will check to see if they can give it to her more than every two hours. Her breathing is very labored. The fluid withdrawn last night doesn't seem to have helped much.

Last night they took her for a CT around 0900 PM. They gave her morphine before taking her. This morning and all of yesterday she's been very clammy and her extremities are very cold (hands and feet). A resident came in at 0945 to check on her, and I asked if the coldness could be caused by the morphine and he said no. He didn't elaborate. Now she was concerned because a nurse had used silk tape on her IV wrist. Mom's allergic to silk tape and it's clearly marked on all of her charts. He was going to get a nurse to come and replace it. He asked Mom how she's doing and she said, "Not good". He said, "Yeah I know. You have fluid in your lung. We drained some yesterday". At 1000, Mom asked again if they were bringing her medicine. The nurse came in and said she could have more in another 10 minutes.

At 1020 Reverend Clark came. Before meeting Reverend Clark, we had discussed asking Pastor Kaufman, a long-time pastor of the Church and friend of the family, to officiate Mom's service if and when the time came. However, throughout Mom's illness, Reverend Clark has come regularly, often, and at times on short notice. Our family, jointly and each of us, has come to love and respect Reverend Clark as a pastor, counselor and friend. Reverend Clark has grown in our family's esteem, and slowly but surely became Mom's shepherd. Thank you, Pastor Clark.

Reverend Clark asked Mom if she was scared, and she said "Yes". He asked if she was at peace with herself and with the Lord, and she said, "Oh yeah". At 1030 they gave Mom more morphine. She said they could now give her morphine every hour. Two residents came in at 1 035 to check on her. They asked how she was feeling. She said "Not good". They asked if her breathing was any better and she said, "Not really". They said it appeared that the pleural fluid was malignant in the good (left) lung. They did a thorough exam, with Mom in the sitting position. They told us that prior to doing anything further; they want to do a tap to find out exactly what is going on. Mom said, "I've thought about this a long time. They stopped her and said she didn't have to decide right now. They said that someone would be in to talk with us, but the pathology team was still analyzing the fluid. Mom looked at me and said, I just want to get better so I can go back to Wal-Mart". What a commercial she'd be for them! Imagine someone in her medical condition thinking about shopping.

Shortly later, Dr. Lischner came in. He took Deb and lout in the hall. He went through the options with us prior to meeting with Mom. We told him that any decision from here out had to be Mom's, and we would support anything she wanted to do. I said I didn't personally think she wanted to go any further. I said it appeared to me that she had been through enough, but those words needed to come from Mom's own mouth. I told him that up until now, Mom confused me because although she would say she wanted to know everything, when she was told all of the details, she would say, "I didn't need to hear that". It's been a very thin line for us to walk. He agreed that Mom needed to be as informed as possible, and she needed to have the final say.

We all went back in Mom's room and Dr. Lischner told Mom we needed to talk. He told her he had talked to Dr. Albain and she was waiting on the final pathology report to come see her. He said she was very adamant about getting the official results before making a proposal. But, a preliminary approach looks like we'll have two options:

1.      They could have a thoracic surgeon (Dr. Vigneswarran) perform the same procedures as they did on the right lung (surgery -pleurodesis, talc, chest tube). This could provide symptomatic relief and give us a bridge to move toward other treatments. Without getting beyond the breathing difficulties, there are NO options.

2.      They can make Mom comfortable and let the disease run its course.

He said if further treatment is going to be a valid option, we'll have to be very aggressive. If breathing becomes more labored they would be obligated as doctors to into bate, that is, unless Mom chose specifically not to. He went on to say that Dr. Albain wants this to be a very informed decision, and she wants the decision to be Mom's! When he finished, Mom said, "I don't want any tubes down my throat". Dr. Lischner said, "OK, we needed to know that". Mom started to talk about her choice, and he said to hold up until Dr. Fisher could see her.

Reverend Clark led all of us in prayer. Julie and I left to use the phone and Deb carne after us yelling, "Mom said to come and get you two. She wants Reverend Clark to read to us". He read Psalm 23 and everyone broke into tears. Mom looked at Debbie and said, "Stop it". Deb was tapping Mom's feet as she always does. Someone asked what Mom was saying, and I said, "She doesn't like her feet tapped on". Vicki looked over and said, "No, she said Stop it. She doesn't want Deb to cry". Mom shook her head yes, and then she said, "No crying". Reverend Clark then read Psalm 46 and Hebrew 4. After the scriptures, Mom said, "You kids know how much I love you all". We said, “And do you know how much we all love you?" She said, "Yes I do".

At noon the nurses tried to draw blood three different times unsuccessfully. Reverend Clark left at 1215. Mom had now been without sleep for two nights, and had not eaten a meal in three days. She would start to doze off but the slightest movement in the room would cause her eyes to pop back open. She was getting her morphine via IV at half past every hour. At 20 minutes past, she would start asking where her medicine was. She was in extreme discomfort. The anxiety of monitoring the clock each and every hour added to her breathing difficulties. It was extremely painful for all of us to watch as she struggled for each breath. At one point in the morning, she said, "That felt good!" We said, "What felt good Mom?" She said, "That breath of air". How heart wrenching!

The grand-daughters (Christy, Amber, and Aimee) were all now with us, and Christy asked why they didn't have Mom on a drip. I took the opportunity (and the credit) and asked the nurse if it was possible to put Mom on a morphine drip. She said she would check with the doctor, but they could probably do that. I told her it would sure save them work because they wouldn't have to run back every hour to inject the morphine into the IV.

And most importantly, Mom could rest a little more peacefully not having to watch the seconds clicking off the clock on the wall. Thanks Christy, I looked like a star! The nurse came back and said she got the OK from the doctor, but when they attempted to set up the PCA (Patient Controlled Analgesic), they had a bad unit. Being unsuccessful in their first attempt threw Mom into a panic attack and the nurse had to run down the hall to get a syringe full of morphine to settle Mom down. They attempted to draw blood another time, but still were not successful. We were all getting very disturbed with the fact that in Mom's condition, they had to put her through even more pain and discomfort. What a trooper she's been through this entire ordeal. You would never, never hear this Matriarch of our family complain! After receiving her shot, Mom could once again close her eyes.

Aunt Ruth and Dianne came in sometime during all of this and even though Mom's morphine induced state prohibited her from being her usual "chatty self', the look in her eyes when Trude came through the door was one of extreme delight. They sat and held hands, Aunt Ruth comforted her, and Mom looked up at her nodding and smiling to everything she said. Aunt Ruth was vividly upset by Mom's appearance and struggle to breathe, but having just gone through her own medical tribulations earlier in the morning, she was a pillar of love for Mom. We all looked at Ruth's frail little body and were in awe at her dedication. We all love that woman like second Mother!

At 330 Dr. Fisher came in. He told Mom they had gotten the results back from last nights CT. But first, Mom needed to introduce her Sister and Niece to her staff. First things first! The fluid positively showed malignant cancer. He said she had a couple of options. He didn't think the surgical procedure or chest tube were really going to help her that much because "she had other things going on". He said the CT done the night before showed an embolism in her left lung. He said if a chest tube were inserted, there was a good chance that she could end up on a respirator.

Mom said, "I've thought about this a lot, and I don't want any more tubes. I just want to be comfortable". He said, I think you've made the right decision. We're still going to take care of you and make you as comfortable as possible. And, we're going to try to make your breathing easier". Mom said, "Thank you". He said, "We can increase your morphine" and did so immediately.

Once he left, Mom was back to "clock watching" when the nurse returned at 420. Mom's blood pressure was 102/43. They were now able to get the PCA connected successfully and her dosage was set to 2 mg per hour. If she required more at any time, it was a matter of pushing a button. When it was explained to Mom that she no longer needed to rely on someone bringing her medicine, you could see the relief in her eyes.

Dr. Albain came in at 515. She said, I'm sorry I'm late, but I have a lot of sick patients over there. I apologize for not getting over here earlier". She reached over and laid a big kiss on Mom. She held Mom's hand, wiped Mom's forehead, and said, "Elsie, I understand you've made some decisions". Mom was becoming less alert and just smiled.

Holding Mom's hand, Dr. Albain continued to say, "Elsie, I talked to Dr. Fisher and he tells me you've made some decisions". Mom said, "They're going to drain some fluid". At first Dr. Albain looked confused at what she was hearing, but realizing Mom was in a drug-induced state, she proceeded. She said, "Elsie, you know we found cancer in your other lung. I don't understand this because when I saw you Thursday, you looked so good. I'm sorry to say, your cancer has come back with a vengeance". Mom nodded in agreement. She said, "I understand you've decided not to do the tube. I think you've made a good decision I'm behind you 100 % and your family is behind you, right?'. We all nodded.

Holding Mom's hand the entire time, she continued. "Dr. Morgan is our hospice

doctor. He'll be in to see you and we'll get you in a private room. Elsie, you're one of the bravest people I've ever known. You've taught me a lot, and you've made me a better doctor. I've learned a lot from you. Not just about cancer, but about courage. I don't remember a lot of my patient's names, but I'll always remember you. And I'll tell all of my new patients about you. I won't use your name, but I'll be thinking of you when I talk to them. I'll tell them about the most wonderful human being, and her will and determination in fighting this disease.

I'll never forget you. You've made me a better person and a better doctor". Fighting the morphine to talk, Mom said, "I wish things could have been different". Dr. Albain asked, "Do you mean you wish we could have beat the cancer?". Mom said, "No. I wish I could have met you under different circumstances". Dr. Albain said, "Elsie, I'm not sure you would have liked me as much. I would never have known your true colors". I chimed in, "Like you, she adores you. She made everyone in the family purchase January's Chicago Magazine" so they could read about Chicago's number one doctor". Dr. Albain said, I autographed your Mom's copy. Me and Michael Jordan".

Mom's personally autographed article

Mom smiled beamingly. Dr. Albain said, "Elsie, I'm not going to let you suffer. We're not going to abandon you now. I'm going to give you more morphine and it's going to make you tired. Eventually, you're going to fall into a deep sleep, and you're going to go to heaven". Mom nodded. We discussed taking Mom home and Dr. Albain said that hospice

was an option at home, but the drips are very hard to control. She said at his point, there was no doubt in her mind that out family would take the very best care of Mom, but she wasn't sure the kids could keep her as comfortable as she was in the hospital.

She felt it would be much easier for the hospital staff to provide a higher level of care. Mom looked panicked and scared and we all assured her that we were going to keep her right where she was because they were already doing such a magnificent job. She asked Mom where she would rather be and Mom asked, "Can you keep me comfortable?". Dr. Albain said, Yes, I'll keep you comfortable". Done deal!!!

Once Dr. Albain left, Dr. Morgan came in and introduced himself to everyone. He asked Mom if she was still experiencing problems with her breathing. She said yes. He said she was probably still excited from Dr. Albain's visit, but he assured her he was going to make her as comfortable as possible. He said he would be increasing her morphine dosage and monitoring it as the evening progressed. Since she was still having some difficulty, he increased it immediately. He also told the nurses to discontinue hydrating Mom. She drifted off into a sleep for the first time in 3 days. Aunt Ruth and Dianne left.

One of the residents came in around 700 PM to check on her, and were talking about increasing her dosage even more. I explained to him that my brother had missed the opportunity to have a meaningful conversation with our Father prior to his death, and I was really hoping Mom would at least be able to recognize the fact that Chris was there. We were going to O'Hare at 8PM to pick him up and wouldn't be back until about 900. He said he fully understood, and they would increase it a little bit, but would hold off until she had a chance to visit with Chris before raising it again. But their number one concern was for Mom's comfort, and that was going to be the determining factor. We were all in agreement and I knew Chris would be too.

Just prior to leaving at 800 PM, I woke Mom and told her we were leaving to pick up her first born. She smiled and nodded. That was the last time she was able to talk to us. She lapsed off into a deep sleep and finally looked at peace with everything. We returned with Chris in tow at 910 PM and Chris tried letting Mom know he was there. Nothing we did got a response. The girls tried waking her several times by talking to her, but she never responded. She was now comatose. Throughout the night we took turns holding her hand, and Chris was somewhat appeased by the fact that she appeared to be squeezing his hand in response to him talking to her.

The nurses told us that when people are in this state, they can still hear their loved ones. At one point during the night, Mom had her five kids surrounding her, one grand-daughter holding her hand, and another grandchild lying in her bed (at her feet) with her head buried in Mom's lap.

None of us could get close enough in those final moments.

February 14 (Valentine's Day)

At 0001, Mom's blood pressure dropped to 76/43 and her breathing was becoming shallower. She asked if we wanted a clergyman to come and the girls told her, "No thanks, Reverend Clark has been here and will be back in the morning. She had her doubts whether or not Mom would make it until morning.

At 720AM her blood pressure had dropped to 65/36 and her time in between breaths had significantly decreased. We had been monitoring her breathing throughout the night, and she was now down to 10 seconds between every breath. Around 745 there was a lapse of 18 seconds between breaths. Her lungs were no longer expanding. We could see the breathing by watching her collar bone area. At this point we attempted to round up all of the kids and grandkids so we could all be with her. At 0759 she had dropped to 28 seconds, and at 800 she was in heaven.