Friday, November 19, 2010

Leukemia's little dance with me

"Leukemia is cancer of the blood cells that starts in the bone marrow." Doctors have been telling me for about 10 months that I might have leukemia. CML was the main suspect. It has been a long year.

It all started with flu like symptoms, leg pain, wheezing, and a low grade fever that lasted months. I asked my Homer Simpson like doctor for an H1N1 test, but he said I wasn't "sick enough". He didn't even examine me. Blood tests were taken and a high white blood cell (WBC) count was found, (leukocytosis). I was sent to an oncologist at Strong hospital, and so leukemia's little dance with me began.

Next came a parade of doctors and exams. Within 10 months I averaged one doctor's visit per month, had 6 series of blood tests, a CAT-Scan, an ultrasound, an endometrial biopsy, a bone marrow biopsy, and a partridge in a pear tree. Why didn't my oncologist tell me from the start that the bone marrow biopsy/aspiration was the only true test to diagnosis leukemia? I would have had it sooner!

About 2 weeks ago I walked into Strong's Wilmot Cancer Center and took a seat close to the door. I never sat that close to the clinics entrance before, but this was D-Day; the day of my bone marrow biopsy results. The day I would FINALLY have a definitive answer as to whether or not I had leukemia. I wanted this appointment to be over with quickly.

Someone wheeled a woman in a wheelchair near the seat next to mine. She stood, walked a few steps and plopped down into it. She was thin, pale, shaking, and was wearing a scarf that didn't fully cover her bald head. I figured that she was having chemotherapy treatments, or had just finished.

Another lady came over and sat down to my right. She had good color in her face, but less than an inch of hair growth on her head. She smiled easily and had a spring in her step. I surmised that she probably had finished chemo treatments with favorable results.

I sat between these two unique ladies wondering if I would be joining their exclusive club that day; a club that my mother had once belonged to. My mother suffered with cancer for 9 years. I'm approximately the same age that my mother was when she died of cancer. This was all too real to me.

Time passed. Both ladies were called before I was. 45 minutes after my scheduled appointment I was finally called into the clinic. I followed the aide inside. A quick right turn, sat in the chair, stuck out my arm for the B.P. cuff, all before she could finish her instructions. I hated that I knew the routine by heart. I was weighted. Yay, another half pound lost! Then I went on to the examination room. The examination room was the same one that I had been in several times before, but it seemed so much smaller now.

I was a bit nervous, but not nearly as much as in the past several days. A relative who sometimes accompanied me couldn't make it that day. I was glad. I wanted to hear the news alone. In the beginning I didn't tell anyone that I might have cancer. Eventually I told a relative who has cancer and could relate. I guess I just didn't want to be pitied or regarded differently. Cancer or not, I am still me.

15 minutes later my oncologist entered the room. She blurted it out. "Your bone marrow biopsy was negative." "No leukemia? I asked. "No leukemia and it looked normal. No disease. You may have had an infection which elevated you WBC count. It has reduced, but still is slightly high. I believe that you have a high normal." she explained.

Fortunately I no longer had to see my oncologist. I said good-bye to my oncologist forever and hoped that I would never see the inside of a cancer clinic again. It seems that leukemia's little dance with me was finally over. I was one of the lucky ones, but I was painfully aware that it could have gone another way. The older I get the more random things like this seem.

You'd think that I'd feel happy, or relieved, but I didn't. I felt angry. Very angry! This all started with flu like symptoms including a wheeze and fever. When I went to my Dr. Homer Simpson during the H1N1 outbreak he refused to test me for it. He said I wasn't "sick enough". He should have at least given me a checkup. Apparently I did have some kind of virus that affected my lungs. Later it showed up on my CAT-Scan as cloudiness in both lungs. The conclusion note said that it was probably an "infection or asthma". It also showed up as a high WBC count. If my doctor had been on the ball, he would have diagnosed it and I would have avoided 10 months of hell. D'OH!

I can't even talk to my counselor about my anger. My counselor has worked with my doctor in the past. Every time I say something negative, he defends my doctor. I canceled my next session. Repressed anger in me tends to turn into depression. What do you do when you're angry or frustrated? How do you let off steam?

Currently I'm dealing with many feelings that I'm trying to sort out. I'm trying to get some prospective on things. I also still feel a connection with leukemia patients that I don't want to quickly disconnect from. I wonder if there is some purpose for this connection. In the next few months I have to follow-up with some doctors concerning medial crap including a few exams. I'm not really concerned. I figure that if the average person my age had all the tests I've had, they would probably find a few things wrong with them too. Hopefully nothing significant will be found.

So that's a synopsis of leukemia's little dance with me. It's been odd, eye opening, heartbreaking, frustrating, all too real at times. But it hasn't been fun.

Again, I want to thank all those who have left me kind comments, sent prayer, good thoughts/vibes. Thanks so very much for caring! I appreciate it!

By the way, a good book on the subject is, "100 Questions and Answers About Leukemia" (second edition) by Edward D. Ball.


Rebecca said...

I'm thanking God that your results were negative and praying that your anger is replaced with peace (and not depression) soon. I completely understand your anger, and I too would be livid.

I can't believe I'm saying this - but exercise really helps me when I am feeling an extreme, negative emotion. A brisk walk or run can completely change my perspective. Before I was exercising regularly, even just a slow walk would help.

Continued prayers for you.

Anonymous said...

My nature is to take everything in a positive light. This experience may feel bad now - but you learned something and in the long run, it may help you and you will be glad you went through with it.

Anger makes for irrational decisions. When I am angry, depressed or have any other negative feelings, I sleep over it. It works for me.
When I wake up - it's all forgotten.

I am glad you are well. May God bless you with a long, fruitful life.

Lady Banana said...

Just try to let all the bad feelings pass..

You have a new lease of life, try to look forward not backwards!

I'm just so glad you are well :)

Awake In Rochester said...

Hi Rebecca,

Thanks for the tip. I use to take walks, but now the weather is colder so need to think of something else.
Hi Jaffer,

I'm not as angery now. I do have some feelings that are hard to defind. Still working it out a bit. Thanks!
Hi Lady Banananananana,

I'm doing better. Still have to work out some feelings. I'm am very glad I'm well too! ;) Thanks!

Dr. Deb said...

Dontcha just hate when no one listens to you. And that you have to jump through hoops because your instincts were brushed aside? I'm so sorry you had to go thru this ordeal. Not only was it a long journey, it was emotional and physical too.

Tracy said...

I obviously came in on the tail end of your ordeal but it lessens it nonetheless.
Thank God you avoided the dreaded 'C' word but your feelings are still important. Keep writing, and keep talking to allow those feelings a place to rest.
Good luck to you!

Awake In Rochester said...

Hi Doc Deb,

BINGO! You articulated some of my feelings very well. For some reason it’s been difficult for me to put them into words. The word wounded comes to mind. Wounded is partly how I feel. So glad you stopped by!
Hi Tracy,

It's good to see you. Thanks! I will.

meleah rebeccah said...

I am VERY happy and ever-so thankful you do NOT have leukemia. *whew*

As for being mad and dealing with your anger? I would yell at a pillow as if it was that idiot Dr. Homer Simpson just to get your frustration out. And running/walking are also great ways to release negative feelings.

Awake In Rochester said...

Hi meleah rebeccah,

Thanks! It's something to be grateful for this thanksgiving.

Maybe I should get a punching bag? lol.

Hey, want to go for a walk? ;) Sounds better.

Babs-beetle said...

I am so thrilled for you! It must have been the most scary time ever. I think a punching bag sounds good :)

Awake In Rochester said...

Hi Babs-beetle,

Thanks! Yes, at times I was latterly scared for my life.