CML Diary

[Guest guest]

I was tossing out old files and ran across my CML diary. At the time several

people asked me to share my story and I never did - for reasons I can't even

recall after 12 years. We have some newcomers that have expressed their fears

and some of our readers have answered with their own experiences of how much

progress they have made since they were diagnosed. No doubt, it went a long way

in helping them to understand that this is not the end of the world, but the

beginning of a new life style.

I have decided to share the first page of my diary and if you approve, I will

post more from time to time. I hope you don't find this presumptious of me, but

if it helps one person to understand how we felt, it could bring them some

comfort that they have valid feelings that are not off the map.

GROUND ZERO

Thursday, July 26, 1996, one week after my birthday. Today I was scheduled for

a follow-up to check my white blood count. One month ago, my white blood count

was considered irregular at 27,000 and Dr. Henry wanted to monitor this more

closely. The count had risen to 56,000. I was looking forward to learning more

about my computer and going online. I had been on antibiotics for approximately

one month for an upper respiratory and sinus infection. I thought the

medication had cleared up the infection, and my blood would be normal again. At

that time the doctor said he didn't want to believe that was what it was, that

perhaps it was a deep-rooted infection, but it was indicative of leukemia. A few

years before, Jimmy's WBC had an enormous jump and the same doctor had suggested

that it could be leukemia, not identifying what kind, was there another? His

counts eventually normalized after I brought him to another doctor in New

Orleans. He immediately scheduled chest x-rays and a CT scan of the sinuses for

the following day. I went home believing the tests would be negative and what I

had was a stubbon infection. That was the last day I went in to donate blood,

because they refused it.

DAY ONE

Friday, July 26, 1996

I waited for a call all day and at mid-afternoon, the doctor who assisted Dr.

Henry called and informed that he had looked at the smears and consulted with

another doctor and they all agreed that I had Chronic Myelogenous Leukemia, or

CML. To hear that you have one of the least curable cancers in the deck is a

shock, to say the least, but to have someone tell you that on the telephone is

so staggering, it was like a death knell. Or could it have been the A-bomb

blast at Hiroshima? Later on in the evening, Dr. Henry called to verify what

Dr. Dhwan had allready called to inform me. They also wanted to do a bone

marrow test in their office on Monday, July 29. This news was the most

traumatic expereience of my life, bar none. I called my husband on his beeper

and he called me right back. When he heard my voice, he knew that I had

received a severe blow, told his boss goodbye he was quitting, and came home

immediately.

In the recent past, I lost 4 brothers-in-law to cancer in less than 2 years, so

the memory was still fresh in my mind the suffereing they endured and would I be

next. My sister came over immediately when I confirmed what the doctors had

previously said. We just stood in the middle of the room and hugged and cried,

all of us.

I don't know how I did it, but I prepared a meal for my family. I had a huge

lump in my throat trying to hold back the tears, but it was impossible. How was

I going to tell everyone else, like my grandchildren and friends? I couldn't

keep my composure for more than a half minute at a time. I had nightmares all

night, night sweats and a major panic attack. My mind was a radio receiver and

transmitter all rolled into one. As fast as messages zoomed through my mind,

more were pouring in, faster than the speed of sound. I think I know what it

means to " lose it " . Only the death of my husband or children could even come

close to the shock and sorrow I felt for myself. I was mourning my own death

while I was still living and breathing. Morning couldn't arrive soon enough.

The only person I saw and recognized in my dreams was my husband's mother who

died about 18 years ago. I could not sleep for more than 15 minutes at a time.

I wrote nearly every day , so I would not lose touch with my emotions. Each

day's writings varied in length. I do not feel I am the same person who typed

these words on my keyboard and it's hard to even imagine all of the things that

were running through my mind. After a while, it became mundane and I did not

write nearly as often. I stopped writing on day 121 for whatever reasons I had

at the time. By the way, my mother in law never returned to my dreams. I think

she just wanted to touch base with me, to let me know she was sorry for all the

mean things she did. LOL

Blessings to all,

Lottie