Thursday, September 10, 2009


A year ago today, my tumor was discovered. I had no symptoms that I can remember though after I learned of it presence, I felt an itching inside but maybe I ignored this. Somehow as soon as I entered the doors of the place, I was overcome with a feeling that something was wrong, which did not happen in the past so maybe deep down I knew. They retook numerous mammograms not saying a thing other than wait. I was there 4 hours while other patients came and went. Finally I was told they needed to take an ultrasound and there was my tumor the size and shape of a grape-not big-only 1.6 cm. I tried to ask the radiologist if there could be a benign explanation for this and she sighed as if that was the dumbest thing she ever heard and said she'd set me up with a biopsy. Note to UM: Some training is needed here. This woman has no business interacting with people.

Even though as I later read, there could be many benign explanations for this lesion, I just knew it was cancer and went straight into hysterical self-pity. Unfair! Unfair! Unfair! Too young to die and even my sick relatives got more time than this. I had been taking Prem-pro and threw my remaining packs away. Did this cause it? As it turns out, probably not. When I had the biopsy TWO weeks later (many centers give them on the spot-UM still clings to that dangerous, especially in my case, notion that you had cancer for years and 2 weeks won't make a difference-maybe if they keep repeating that, it will become true but there is no evidence that it is), it was no surprise to me when the positive results came back. A few days later, more results were in and they were even worse. The tumor was triple negative and my only hope of surviving would be chemo. In the bible of breast cancer, Susan Love doesn't even mention TNBC as the term had not been coined until after she published but she does refer to tumors that are receptor negative that are aggressive, deadly, difficult to treat, death sentence..blah, blah, blah that didn't exactly fill me with hope. Going on the internet showed more articles always prefacing with the words 'poor prognosis' 'deadly'. My mom had BC when she was 64, estrogen positive. She had surgery and radiation followed by 5 years of Tamoxifen. End of story.

I think the bleakest time was that first month learning of this whole thing. Worse than the 2 surgeries, worse than the chemo and radiation to follow. Why did I have 2 surgeries? Because in the month between the first mammogram and surgery, this thing had doubled from 1.6 to 3 cm so bad margins and according to their nifty computer programs spitting out prognoses, decreasing my survival 10% or more. I went from Stage 1 to Stage 2A in a month. They are still sticking to their tired 'had this for years' 'tumors just don't grow that fast'.Babies grow that fast and that is controlled growth.

This must be something they learned from lawyers versus actual science. They assume it was a mis-measurement at the start. How hard is it to measure a stationary object? They had the dimensions down to a millimeter.

Even their (the one they use which is a widely used commercial program) prognosis computer is suspect as the data in it is old. Her2 positives are lumped together with the negatives. Only in the last few years did the early stage her2 positives get treated with Herceptin. Ten years ago, the tests to identify them were faulty. Dose dense therapy has not been around for long either so it is now impossible to predict the long term outcome of TNBC. In the short term, though, TNBC is an ugly beast that if it comes back, it comes back soon-mainly in the first year. After 3 years, it is probably gone for good.

So I survived the first year. In 2 years, I can breathe easier though deep down, I think it is gone. Unless one is node positive, thankfully I was negative, they don't screen for metastases. The screens are full of false positives and false negatives. There are no clear markers identified yet for TNBC. They do watch for local recurrences every 3 months as they are something they can do something about. Catching distal recurrences early has little benefit: one just knows that ones days are numbered for a longer time. Distal mets are very difficult to control but fortunately new agents are popping up even effecting a cure such as the PARP inhibitors. Meanwhile we are to watch for symptoms. Bone pain-fortunately rarely below the knees and elbows so pain in the fingers is probably arthritis, not cancer. CNS symptoms such as headache, dizziness, double vision, etc. Liver mets: nausea, weight loss. Lung mets: a tough one as it spreads silently but unexplained coughs. Lung mets are the most common in TNBC. I figure that if I perform at the top of my ability, I will notice if suddenly I can't perform as well. I can run for over an hour without huffing and puffing like I did right after chemo. These lungs seem to be working just fine.

I hate it when people go on and on how glad they got cancer because they learned such valuable lessons. Maybe I have a bad attitude but I am not glad I had cancer. It was terrifying and has left many scars on both my person and psyche even though I recovered much more quickly than most. I am very thankful for the support I received during this whole ordeal especially my husband Steve who waited on me hand and foot so I didn't need to lift a finger and who spent hours arguing with insurance agents, to my children Shanna, Josh and Naomi who tried to make me feel better. Shanna and her son flew out during my first surgery to keep me company. Josh took me out almost every week so I would have some change of scenery and Naomi, who really wanted to quit basketball, played it anyway and made me proud during her season that coincided with my chemo. My friends who brought flowers, little gifts, videos, meals, various goodies and most of all provided company. They even decorated my X-mas tree when I was too tired from chemo to consider even moving. I am thankful for the on-line community for being on my blog trying to cheer me on and share their experiences with me. I learned more from them then anything I learned from the doctors. I am thankful for Lesa in MA, who doesn't know me from squat except as a fellow BC survivor who still sends me these beautiful hand-made cards to cheer me up. Although UM has a long way to go in becoming an ideal treatment center, I am thankful for my principal doctors, especially my onc Dr. Henry who patiently answers all my questions and is never condescending. I also appreciate the Wellness Community with their many support functions: support groups, yoga, tai-chi, and their cooking classes. The local high schools' women's basketball team held a fundraiser this year to benefit LiveStrong. Many of my friends came out to watch the game wearing the LiveStrong T-shirts even though they weren't sports fans. Naomi had a great game and they won. It was a highlight of those bleak winter months of chemo with people buying raffle tickets and donating them to me even though they barely knew me. I did go to the LiveStrong program at the Y and it helped me become stronger faster. The ladies there are very supportive and always visit me when I go back there. They also provided a scholarship so I could return there.

It has been quite a year and I am so ready to move on. I will continue this blog but it will be less cancer related as cancer becomes a smaller and smaller part of my life.

1 comment:

Beth said...

Congratulations on getting through the first year! I would never say 'I'm glad I had cancer' - no way, but I am trying to make the best of it (you know, the silver lining kind of thing)... I've made a (short) list of the good things (such as slowing down and appreciating little things). But of course I also have a list of things I hate about it (my black cloud list)...


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