Jennifer Goodman Linn You Fearless

Jen 5: Cancer O – It’s Official!

Dave and I received the pathology report back from my surgery last week and the great news is that I am technically free of disease.  What this means is that there are no measurable traces of cancer in my body.  When the Dr's scraped around my tumor they didn't find any microscopic cells.   This is amazing news and frankly, I was shocked.  Given the size and the rapid growth of the tumor, I assumed that even if the surgeon was able to remove the mass, he would report back that there is evidence that there are microscopic cells that he couldn't see/get to (this is what happened 5.5 years ago after my first surgery). Although I am cancer-free, I will be starting a new form of oral chemo as soon as I recover from my surgery.  There are two medical approaches when you are told you are free of disease: 
  • To discontinue any treatment and just monitor the vulnerable area very closely (e.g. CT scans every 2-3 months)
  • To continue with treatment as a preventative measure (to buy more time and keep the cancer away longer if one thinks it might return)
Given my track record and the fact that this oral chemo has a very low toxicity, we have opted to continue with preventative chemo. The promising news is that there is no "life time max" for this chemo so I can stay on it for a long time if I need to until the medical community finds more treatment options (not fun for me, but important since I plan on sticking around for a long time!)  The low toxicity also means that there are very few side effects so hopefully I will continue to build back strength and stay energetic and healthy.
Not surprisingly, the pathology report revealed that the tumor was very much alive (only about 20% of it had been killed off by the chemotherapy). So it's a good thing that we took that sucker out when we did!  
We also got confirmation that this tumor was BIG. It measured 26cm x 23cm x 10cm. When we heard the size of it, I couldn't be angry with the Doctor for the size of my scar.  He and I always had a deal that he would keep the incision as small as possible. He apologized but said that given the scope of the tumor, he thinks he did a pretty good job!  I got my staples removed this past week and although the scar has a lot more healing to do, it is looking pretty good.   I am slowly getting used to it. Hopefully, over time, my scar will accentuate my stomach muscles and I will look like I have a six-pack!
So, you ask, how do I feel about all of this? For one, I am EXTREMELY grateful that we are in this position. To be cancer-free again is a great place to be. Hopefully I will keep this label for the rest of my life but, if not, at least we are at a good starting point.  So, despite the soreness that continues from the incisional pain and the challenges of getting my digestive system on track again, I am feeling great.  I would take those symptoms any day over the fear and anxiety of having a tumor growing inside of me.
Over the past five years, Dave and I have tried very hard to change our orientation to truly live in the present. So, we are very happy that there is no more disease. However, the reality is that we are far from planning a party and hanging up our cancer hats just yet.   This is the 5th time I have been deemed cancer-free.  When I can get to 5 years of being free of disease (with no assistance from chemotherapy treatment or surgery), then we will throw a big bash. So please understand that we are grateful and we still feel that there is a long road ahead (Hey, I'm going back on chemo so this is no walk in the park!).  This is a test to see how thoroughly you read my blog, for all of the posts that send ecstatic congratulatory notes and cheers, you really don't get it.  I am not alone when I say that cancer patients don't feel like celebrating at first.  Only when it seems like the news or condition is more permanent do we allow ourselves to relax a bit.  This is often the time that I feel most "distant" from friends and family.  They want to celebrate that "we are done" and while hopeful, I am not in that camp.
If you gave me truth serum, I would also tell you that I am a little freaked out by the events of the past month.  When I had my first tumor removed on 12/30/04, the tumor was 18cm. My surgeon at the time told me that the mass was very large and had been very aggressive.  That all made sense to me because it took us a good 6-8 weeks to figure out what was wrong with me.  I experienced my first symptoms around Halloween and I wasn't officially diagnosed until a good 2 months later. So, it made sense that by the time we understand what was wrong and addressed it, the tumor had grown to such a size.
What's truly unnerving to me is that 5 years later I am well aware of my cancer.  I know my body really well and I am working with the best sarcoma surgeon and oncologist at the best cancer center in the country. And even aggressively addressing this tumor with chemotherapy and constant scans, it got to be 26cm.   Thank goodness we were on top of it. I can't help but think that if the tumor had been growing this quickly 5.5 years ago when we weren't as savvy as today, I might not be here...
If you attended Cycle for Survival this past year, you heard me announce that next year I will be proudly be wearing my Jen :5, Cancer: 0 shirt.  I am thrilled to say that I can make good on that promise!