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

 

 
The operation granted our family precious months to enjoy Mom's presence. Nonetheless, her cancer was prevalent from her lower pelvis to her neck, and she lost her brave fight with this terrible disease on Valentine's Day , 2001.

The Beginning

 

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.

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 70th birthday (April 20th, 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.


Admitted to CHO 

Once admitted to CHO, Dr. Patel took additional x-rays and suggested that samples of lung fluid be drawn to see if she was in fact, suffering from pneumonia. When results came back from the scans, Dr. Patel decided her lung needed to be drained, but he needed to consult with Dr. Manigold, who was due to return on Wednesday.

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.


Second Opinion

May 6

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 6th 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.

   

Family Questions

  • 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 1st 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 1st) 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:

 

Ovarian Tumor Marker Counts

Type of tumor

Count Range

Not Elevated

   1-36

 

Mildly Elevated

   37-50

 

Moderately Elevated

   51-100

Markedly Elevated

   >101

 

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 25th:

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 8th).

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 1st time and 39.2 (102.5) the 2nd 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 2nd 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.

Her vitals were:

Blood pressure 128/61

Pulse                 116

Temp                 97.8

 

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 6th 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 16th, and on the 17th, 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 2nd 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.

 

  She discussed the previous nights basketball game with them and got on her soapbox again about how Phil Jackson was treated by Bull’s ownership. The Lakers now had a 3-1 lead on the Pacers, and she could tell you all of the details about the game.
 

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.