I really wanted to title this "It's Always Something", but that is the title of Gilda Radner's book about her struggle with ovarian cancer. Now that I have been "formerly" diganosed with Hodgkin's Lymphoma, I am having trouble being creative with this blog. What a BORING title!
Well, it is three days post 2nd chemo. My hair started falling out on the 12th day after the 1st chemo, so last night, I asked my sister to just shave my head. She had already cut my almost-shoulder-length hair twice, and it looked cute, but it was a mess when I was trying to wash or style it. The wig I received from the American Cancer Society is really pretty nice, but it gave me a headache after about 4 hours last night. Today it is more itchy than anything.
I would really like to just lay down, but have to work whenever I can. If I can just get through today and Friday....
It's hard to believe it has barely been three months since this all started, unless you count the signs I ignored in November. Just before Thanksgiving, I had some lower back pain, but figured it was a result of trying to do too much before the Holidays. I took to bed once, but the pain actually got better when I was walking around. Besides, I was having Thanksgiving dinner and did not have time to be sick! The 3 or 4 episodes of chills, uncontrollable shaking and sweating at night were self-diagnosed as some kind of viral bug -- I was OK during the day, though. Weird.
Fast forward approximately 1 month. Lower back pain came back on Friday, Dec. 16. I figured it was a kidney stone, so I started drinking lots of water. Saturday, the pain was the same or worse, and by Sunday afternoon, I finally went to the E. R.
After 2 CT scans, the E. R. doctor came to my bed, leaned over me and said, "well, I have some bad news for you -- you don't have a kidney stone." It flashed through my brain that that normally would have been good news, unless there was something else going on, which there obviously is. I said "well what is it? Is it cancer?" Yes, I actually said that. The dr. just said "we don't know yet" and walked away from my bed, still in the hallway because they were too busy to find a curtained E. R. stall.
After being admitted, the next 2 1/2 days were spent having numerous blood tests, an MRI and a needle biopsy of the mass around my spine. My back pain was again gone, and I became so bored in the hospital, I offered to do filing at the nurses' station and wrap Christmas presents for the nurses. I worked on a jigsaw puzzle in the solarium and counted the number of floor tiles in the hallway. Twice. Not being home during the day for over 40 years means you don't have a connection to daytime TV. I could not bear to sit in bed & watch talk shows or Judge Judy.
I was finally sprung and went home to wait for a diganosis from the needle biopsy. Unfortunately, the biopsy was inconclusive, so at the suggestion of my G. P., I saw a hemotologist/oncologist in Valpo and had a PET scan on Jan. 9. The next 2 weeks saw a bone marrow test and another needle biopsy. It had now been over a month since my E. R. visit and no definite diagnosis. The bone marrow test was negative, so that was one plus for me. The 2nd needle biopsy, however, was still inconclusive. All they could get was fibrous tissue. On Jan. 31, Dr. Samy told me he believes it is Hodgkins Lymphoma - nodular sclerosis, but further testing was needed and recommended I call the University of Chicago, Dr. Sonali Smith, the Director of the Lymphoma department. After the slides from the needle biopsies were re-tested at U. of C. with still no definite diagnosis, she lined me up with a neurosurgeon. My God -- was it in my brain too? Little did I know that neuro surgeons also operate around the spine. He examined my films but advised that he would not be able to get to the mass on my spine from the back, that it would take a thorasic surgeon to go in from the front and navigate to the mass on the front of the spine to get a chunk of tissue to be biopsied. Thank God that both he and Dr. Smith felt that would be too invasive and would delay treatment. Dr. Smith then recommended I see a breast surgeon to see about removing a lymph node on the left side of my chest wall that had "lit up" on the PET scan. This would be a much simpler operation and hopefully, get a positve diagnosis. So on Valentine's Day, I had the operation where Dr. Jaskowiak got "2 juicy nodes", as she described to my sister. A few days later, the diagnosis was confirmed and within a week, I was having "pre-chemo" tests on my heart and pulmonary functions, as well as another CT scan. Three days later, March 5, I had a Port-a-cath placed, a follow-up appointment with Dr. Jaskowiak and my 1st chemo (ABVD) treatment all in one day.
I can't say enough good things about U. of C. They are able to coordinate appointments & procedures to make it work for the out-of-town patient, though March 5th was a VERY long day.
So besides a blood test on March 12, which indicated a very low WBC (White Blood Cell) count, and the 2nd chemo on March 19, that pretty much brings this up-to-date. Hodgkins, I was told, is the only blood cancer they continue to treat if the WBC is low.
I'll probably say this over & over, but I have the greatest sister in the world, hands down. She has been with me to every appointment and procedure, paying for all tolls and gasoline. Thank God for REAL family.
