The not-so-strange case of treatment worse than dis-ease

This is a common case of the treatment being worse than the symptoms that required medication. Not so mysterious, right. But I tell you this week has been the one from hell: frustrating, expensive, and just plan awful.

It started with a urinary tract infection (UTI), the second in two months. This one more severe than the first but while both had sudden onsets, this one brought teeth chattering, bone clattering, shaking chills and a rapidly spiked fever that started about 7pm would not and did not come down for nearly 12 hours. It spiked quickly, staying at 102.5 while I huddled under blankets, a quilt, a down comforter and a heating pad in a long thick flannel night gown.

The next day I saw my primary care physician; she prescribed cipro for the UTI clearly bringing out bigger guns this time.

After just one dose on Tuesday night, I awoke on Wednesday with petechiae. But was told not to worry about it because it was "a localized reaction". OK, I thought, I can live with this......until the next phase began with unspeakable abdominal pain, nausea and vomiting -- at night. Only at night.

My first UTI was in December. At that time, my primary care physician said she was suspicious that the chlordiazepoxide-clidinium prescribed by my gastroenterologist might be the culprit. It has a known side effect for urine retention. A nice cozy environment for bacterial growth. We didn't make any changes then: perhaps it was coincidental. Kind of watch and wait. I'm good with that. I've been doing for three years for CLL.

But looking back over the week, I was kept awake by fever and chills, by indigestion, abdominal pain, nausea and vomiting every night. Now, I am sick, I am tired, angry, frustrated.

Here's the thing. To be prescribed cipro to treat a UTI caused by chlordiazepoxide-clidinium prescribed for severe abdominal pain and then have abdominal pain, indigestion, nausea and vomiting from the cipro is a lot crazy-making. And there's more: cipro has other side effects like: vasculitis and mouth ulcers (Behcets symptoms for which I take prednisone, colchicine and budesonide. But there's even more: cipro also depresses bone marrow, lowers hematocrit and hemoglobin. I am Coombs Positive for autoimmune hemolytic anemia (AIHA); have had one severe bout for which I was hospitalized and transfused). And, cipro is known to cause tendon ruptures. The risk factors are: people over 60 years who take corticosteroids. I am in that age range........I take prednisone......

Wheeeeeee. This feels like a roller coaster ride?
Or a day in the fun house.
But in reality it is a big expensive, frustrating round of illness, prescriptions that cause new illnesses needing new prescriptions to treat the -- well, you know more & more & more & more.
I know I am not the only one whose been on this roller coaster ride. Check the link out for a dandy little poem that tells the same story I'm telling but in an amusing-sort-of-way. I just don't feel amusing. I need to rant.

I want to rant. I also need to lay this experience out as objectively as I can to be sure that (1) I'm not crazy and (2) this really is happening in the way I think it is. Am I done ranting ........ I am. But I don't know that I feel any better.

Today I am reviewing the list of poisons that I ingest every day. So that I can have a normal, regular life. Regulate by body's dys-regulated immune system. Keep fatigue from putting me down for days at a time; keep mouth ulcers/lesions at bay and allow me to eat, talk, work -- brush my teeth (small enough request, I think); prevent severe abdominal pain, and run-away-every-day-diarhea from Behcets. That list of toxic junk worries me -- although it used to be longer still! With even higher doses.

So, I'm not unmindful of how fortunate I am. I know there are people who are really sick. Who have really aggressive CLL and Behcets that moves to the lungs, the neurological system, the eyes.
I don't mean to complain.
I don't think I'm a whiner.

But I am angry and I'm wondering if this is the only way out or around this ??????? mess ??????

Trying to sort it out

When I look through the notes I made last summer, I see how difficult it was to sort out what was happening to my body. I kept wondering: "How could one disease kill off red blood cells and make too many lymphocytes (white blood cells) at the same time?"

At the end of June, I saw my primary care physician (PCP) with complaints of fatigue. Several blood tests were ordered. But when they were done, the phlebotomist neglected to do the most important one, the CBC (complete blood count). This was not noticed for several days while I was continuing to spiral down in energy and waiting for a call from the doctor's office. Finally, a frantic technician called to inform me of their error and ask that I come in asap for the test. About four hours later, another frantic call came from the PCP's office to 'go immediately to the emergency room'. I did.

July 5 - admitted to hospital

July 6 - transfused with 3 units of packed red blood cells; Hemoglobin was 6 and Hematocrit was 16; I saw the hospitalist at 5 PM who spoke to Larry and I about hemolytic anemia and the need for further tests. He said they don't know what has caused the anemia. They started giving me 80 mgs of prednisone once a day in the morning, folic acid and pepcid.

"Autoimmune disease happens when a confused and corrupted immune system starts attacking perfectly good cells, something that should not happen under normal conditions. Roughly, 11% of CLL patients with advanced disease will develop full blown autoimmune hemolytic anemia (AIHA) but as many as 30% of CLL patients may be at risk for developing it. In simple terms, their immune systems start attacking red blood cells, and if these crucial oxygen carriers are killed off faster than they can be replaced by the bone marrow, the result is anemia, low hemoglobin levels and low hematocrit. Anemia is a quality of life issue. Low red blood cell counts and low hemoglobin lead to poor oxygen supply to the tissues, which in turn lead to fatigue." (CLL Topics)

July 7 - CT scan and bone marrow biopsy
July 9 - discharged from hospital with the caveat that that is going to be a long-term thing. Hemoglobin, 11 and Hematocrit, 29
July 13 - fatigue, pressure on chest, heart pounding, nausea, difficulty sleeping. Letter from Anthem Blue Cross - saying hospitalization was "not medically necessary" - denied
July 15 - exhausted, shakey, constant headache; but energy level a little better in early evening
July 17 - Hematocrit 30; reduced prednisone to 60 mgs. Sleepless - awake most of the night and finally fell asleep at 6 AM
July 19 - Human Resources put me on Family Leave
July 20 - we had our appointment at Beth Israel in Boston and learned the definitive diagnosis was CLL

"Chronic Lymphotic Leukemia (CLL) is a slowly progressive form of cancer, characterized by an increased number of B lymphocytes, of the white blood cells and bone marrow. Blood cells are normally produced in a controlled way, but in CLL the process gets out of control. The lymphocytes multiply too quickly and live too long, so there are too many of them circulating in the blood. These Leukemia lymphocytes look normal, but are in fact not fully developed and do not work properly. Over a period of time the abnormal cells replace the normal white cells, red cells land platelets in the bone marrow. It is the most prevalent form of leukemia and occurs predominantly in patients over 55 years.

"Many cases of CLL are detect by routine blood tests in persons with no symptoms, however, patients may have enlarged lymph nodes, enlarged liver and spleen, fatigue, bone pain, abnormal bruising, excessive sweating, loss of appetite, weight loss, re-occurring infections and lack of energy. CLL affects a type of lymphocyte called the B lymphocytes and causes suppression of the immune system, failure of the bone marrow, and infiltration of malignant cells into organs. Although CLL starts in the bone marrow, it can spread to the blood, lymph nodes, spleen, liver, central nervous system and other organs. It does not usually form a solid mass or tumor." (CLL Support Association - Patient Support and Education for CLL)

July 21 - nausea, dizzness, shakey, tired; slept from 11 to 2 but didn't get up until 4; intestinal discomfort
July 22 - read David Arenson's blog (http://www.clldiary.blogspot.com) and found his citation of "The Anatomy of Hope" by Jerome Groopman; Larry got it from our town library

How different are my blood test results from normal in terms of lymphocytes? Platelets?
How does the autoimmune hemolytic anemia (AHIA) affect diagnosing of CLL? Staging of CLL?
Was a Coombs test for AIHA done?
Does AIHA complicate CLL? How?
During this watch and wait period, what symptoms are there? What should I be watching for?
If I have an ordinary infection, virus etc, which doctor will treat it? PCP? Hem/Onc?

July 24 - Hematocrit 29; decreased prednisone by 10 mg; Phone call from Amy: Victoria is coming - my only & favorite & wonderful granddaughter is coming for a visit.

July26 - I have been home from the hospital fro 16 days. Seven of those days were notable for the fatigue. During some of that time, I could sometimes get a little energy for my studio in short bursts; I had lots of creative ideas.

Then came the prednisone reduction ------- and then the name, Leukemia. Double whamy! Withdrawal from the prednisone is impossible; it feels like a sucker punch to take medicine to relieve a health condition only to find that the stuff compromises one's daily well-being. Now, I have no energy -- for creativity or for doing much of anything. I am unable to focus on anything long enough to do it: want to do it -- plan to do it. In the first days home, my creative juices were strong; now I feel empty. My head wants to work but I am unable to translate it to action.

July 27 - I am blessed with wonderful people in my life.

"Happiness is the spiritual experience

of living very minute with love, grace and gratitude"

Denis Waitley, Psychologist, American, 21st century