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

A Girl-Warrior in the World of CLL

The Girl Warrior Begins

Seven months. Not long in a cosmic sense. Long enough emotionally to have unearthed some truths. About myself. Long enough to have learned a little about this disease.

In my early reading, I came across the question of whether to tell anyone about the diagnosis. Some said never tell your employer. Clearly, others disclosed to family and friends, only. I thought about this issue for a bit and made several decisions.

First, I would tell my employer and those co-workers to whom I share personal stories. I decided that I would tell three or four friends in my social circle. I told my daughter and siblings. These were good decisions as the out pouring of love and care and concern has been quite wonderful. I understand why in some work environments, one would chose to remain silent in fear that others may not think one up to the task. My work environment is a small private school for students with physical and developmental disabilities. The executive director has created a warm and loving environment not only for students but for staff as well. I have not regretted this decision.

Telling my daughter was perhaps the most difficult of all. Amy and I are all that is left of my original nuclear family: my son Jonathan died when Amy was six and my husband died when she was only twelve. I knew the words 'cancer' or 'leukemia' would be difficult to hear and process.

I chose not tell my mother. My family has experienced a lot of illness, particularly cancer. My brother had testicular cancer in his thirties and prostate cancer in his fifties; one sister had a soft tissue sarcoma (intestinal) and just last year another sister had something called a schwanoma. I just could not tell my mother! If the CLL is indeed 'indolent' I may not need treatment for a number of years so I reasoned that perhaps she just needn't know.

My mother is worrier. She never stops worrying about us even though we now range from 44 to 46, 50 to 52, and 60 to 62, we are still her children. I wanted to spare her the angst of knowing and not understanding and not being able to 'do' anything.

But during this winter when B-symptoms appeared with some frequency and I was learning to accept the diagnosis -- to say it to myself: "this is my life, now" "this is not going away" "I have cancer". And I realized that withholding important information from someone you love changes the nature of the relationship.

Clearly the withholding didn't come into focus as a problem until I was able to know (in my bones) and assimilate the 'word' and its meaning to me and my life. Once I moved into that realm of understanding, the disconnect between my mother and I became very uncomfortable for me.

And so a new decision is made. Larry and I will visit my mother this weekend and during our time together, I will disclose my new reality as a "Girl Warrior" in the CLL World. My sister, Susan and her husband Rich, will be with us and this is comforting.

After the diagnosis

It has been seven months since the doctor gave me the diagnosis of CLL. During those months I have had to come to terms with my new reality. The summer and early autumn, I focused soley on the autoimmune hemolytic anemia and recovery from it. I was very fortunate to have excellent medical care; the treatment worked like a charm and by mid-September I was back to work on a very part time basis. There has been no relapse.

Of course, I "heard" diagnosis of chronic lymphocytic leukemia in July 2006. But I didn't know it -- didn't let it into my bones until February 2007.

Autumn turned into winter. I started to spike sudden fevers. Without warning, a great fatique would descend on me leaving me unfit for anything but bed. I began having night sweats (and day sweats too). Since Christmas, these symptoms have been frequent, always surprisingly sudden, leaving me frightened and sad.

One day the thought came to me,
“This is not going away. This is my life.”

This week, after another sudden fever put me to bed, I realized for the first time and said, “I have cancer”.

It has taken me six months to know this,
to say it to myself.

"We so often look so long and so regretfully upon the closed door,
that we do not see the ones which open for us."
Alexander Graham Bell

Is this the old-man's cancer?

July notes from Beth Isreal Hospital:
" . . . .spleen not enlarged. bone marrow aspirate and biopsy revealed focal scattered lymphoid aggregates. She did have increased fine fibrosis associated with lymphoid infiltrates. Immunophenotyping revealed a small clonal B-cell population that expressed CD5, CD23, and dim CD20. The cells were ZAP-70 positive but CD38 negative."
White Blood Count: 13,700
Hematocrit: 34.2
MCV: 93
Neutrophils, 11
Platelet count: 284,000
Reticulocyte count: 3.3%
IgG: 634; IgM: 259; IgA: 47

WBC present in normal numbers; occasional hypersegmented neutrophils.
Platelets present in normal number and normal appearance.

Treatment has been for the AIHA: 80 mgs prednisone daily titrating over the last two months to 20 mgs (current) and a goal of 10 mgs. Further the report notes: "If she cannot be tapered below 30 mgs because of ongoing hemolysis, I would consider the addition of Rituxan."

Who knew that withdrawal from the prednisone would be so horrid. And keep me down all summer long. By the time I got to 20 mgs/day, I felt like myself: I had energy to be up and doing stuff although I didn't work through July, August and half of September. I simply snoozed the summer away: no energy; dizzy; light-headed; head-ache; nauseous. intestinal distress.

Are there questions I should be asking that I haven't? What is important for me to know and understand right now. There is so much information and it is difficult to know where to begin. I have read David Arenson's 's blog (http://www.clldiary.blogspot.com) and am trying to follow his advice to use watch and wait as a time to learn.

My blood was monitored weekly through a CBC (complete blood count) and I had weekly appointments with the hematologist/oncologist Throughout July, August, September and October. Each week, he reviewed blood reports and prescribed little reductions in the prednisone. Each reduction in medication brought with it a new set of side-effects as my body "withdrew" from the prednisone. But there was, at the same time, slow but steady improvement in moving away from the anemia. For example:
2 months before CLL diagnosis: Hemoglobin, 13; Hematocrit, 36.9
At hospitalization for anemia: Hemoglobin, 6; Hematocrit, 16
CBC end of July: Hemoglobin, 10; Hematocrit, 31.
CBC end of August: Hemoglobin, 11; Hematocrit, 33.
End of September: Hemoglobin; 11; Hematocrit, 31

Most days I was only up for only a few hours . Often, I would have a little surge of energy between late afternoon and early evening. "Yes, that's prednisone", my doctors would assure me when I complained about the snoozing etc. Our home is near the ocean; our house has a small screened-in porch at the back and there I spent most of my awake time there, reading, looking at fiber art magazines.

Is it really the Old Man's Disease?

Is it really as "good" as Dr. M. portrays?

"There is nothing the body suffers that the soul may not profit by."
(George Meredith, British write & poet, 1828-1909)