Saturday, June 6, 2016

When I was a teenager, I was alone a lot. No one wanted to be around the sick kid. Back in the 70's, people were misinformed enough to believe they could "catch" cancer. Cancer was rare, childhood cancer even more rare. I suppose no one thought I was going to live and they certainly didn't know what to say to me, my sisters or my parents. It was easier to stay away and not say anything. 

My mom would bring me home from chemo, tuck me into bed with a vomit bag by my side and go to work. It was a very lonely time with no internet, no texting, no dvds, just t.v. I watched a lot of t.v. At least I was fortunate enough to have parents who let me smoke

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Saturday, November 15th, 2014

 "You're too young for cataracts." That's what the eye doctor, the eye surgeon's techi and the eye surgeon all said. But I proved them wrong! Thanks to radiation therapy and the steroids that typically

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 Mom, Mom, wanna see something gross? I still remember that day. It was 1978, I was 15 and was adjusting the collar of my turtleneck, getting ready for another day in my sophomore year of school. Sure, I hated school and February in Maine is cold and icy, but finding a lump the size of the glass headers we used to play marbles with sitting just above my right collar bone was not my idea of an excuse to stay home. I didn't take it too seriously until I saw the look on my mother's face. I'd only seen that look of sheer terror and panic one other time,

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June 23, 2013 (Sunday)

I saw my oncologist a few weeks ago for my 6 month. I did the blood draw the week earlier, so we could go over the results. All tumor markers looked good, so that was a relief. I still have some lumps under my jaw line where I had the tooth pulled that he is concerned with, but we are on a wait and see with that. He would like me to have an MRI, dexa-scan (for bone density) and ultra sound to check for breast cancer. I choose to do none of the above, at least for now. It cost me $35 just to see my oncologist and $15 for the lab work that was sent to our hospital for analysis. That's $50 in copays for just one onc visit. Last year, it cost me half as much for the same services. I can just imagine what the copays are for all the tests. Definitely not in my budget right now. We're still paying off the credit card we used for dental this winter. 

A lot of my papers in college and graduate school were based on cancer research, etiology, treatment and side effects. Following the evolution of cancer research and cancer treatments for nearly 3 decades now, I have seen some big changes, some good, some not-so-good.

I've been living with Hodgkin's Lymphoma for 35+ years, with 3 recurrences, the last one being 8 years ago. When I was first diagnosed in 1977 at age 15, I heard terms like, "nodular sclerosing" and "mixed cellularity" tossed about, but never really knew what they meant. All I knew was I had Hodgkin's. Over the decades, the research has evolved and so has my cancer. My doctor, at the last visit, got it through my thick skull that my Hodgkin's is different from the Classical Hodgkin's (CHL), in that it is Nodular Lymphocyte Predominant (NLPHL), with the cells being larger and growing slower than classical HL. The Reed-Sternberg cells are still present, but the over all cancer cell is larger and popcorn shaped with more lymphocytes. Even though I have been researching all things cancer for over 3 decades, writing most of my research papers in college and grad school on the subject, I have always been a bit confused about my own Hodgkin's. I just didn't seem to fit the classic profile of CHL. A while back, my oncologist told me that I wasn't cured from all the treatments I've had in the past because the treatments were for CHL, not lymphocyte predominant, slow growing cells. Most chemo attacks, small, fast growing cells, so the treatments would take care of reproducing cells, but mature cells were lurking in the background, growing slowly and slugging along under the radar. My lazy ass cancer takes years to present itself, and after researching NLPHL in depth, I've found that it can never be cured, only

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