I have chosen to be transparent during my cancer journey. Part of that decision, as you’ve heard me say before, is a selfish desire for support. My community of readers has become invested in my family’s situation and if you’ve chosen to be a regular reader of this blog, you’re riding this roller coaster with us. Another reason that I’ve chosen to write about all this stuff is that writing about it helps me to organize my thoughts as I research what my very able team of doctors tell me I need to do to get well. Though I don’t doubt for a second the advice they give me, I have to be able to understand how that particular test, drug or treatment is supposed to work for me. If I have that understanding, then I’m not only receptive to the treatment, but I’m able to intelligently contribute my voice to my overall regimen of care. A motivated, engaged cancer patient is a mighty important ingredient for a good outcome.
The other reason to research and, for me, to write is to calibrate my bullshit meter. When I walk into my doctor’s office I will have made every effort to know as much I can possibly know about what is going on. When I first met my nephrologist, Yale trained Dr. Raj Alappan, Jill got a bit uncomfortable as I peppered him with questions. She spoke up and apologized to him for my barrage of questions. I remember that he laughed and correctly stated that he knew what I was up to. He said, “Mike’s just trying to see if I know as much about this as he does.”
My point is that you can be fat, dumb and happy if you’re in the doctor’s office talking about the flu, but if you’ve got a cancer diagnosis, you’d better be ready to study because when it gets right down to the nut cutting, you’re the one who will make the decision about what care you receive.
Which brings me to where I am right now, at another crossroads. I subscribe to a forum where some 2,000 people from all over the world who are either RCC patients or people who are living with or helping to care for someone with renal cell cancer write about their experiences. On that forum we discuss treatments, insurance issues, doctors and how we’re feeling. Forum administrators keep the discussion on topic. I have discovered a mountain of information and a whole lot of satisfaction from the knowledge that the person I’m talking to has walked a mile in my shoes.
Since mid-June of 2009, I have been a regular daily reader of posts to this forum. They’re pushed to my Blackberry and I can sift through them by title and only read the ones in which I’m interested. Since I always thought my next course of action would be a treatment called high-dose interleukin-2 (HD IL2), I read every single post that came across on that subject.
Now it seems that a different direction may be warranted and I’m struggling to get up to speed before my 7:15 a.m. Monday morning appointment with Dr. Pippas. Here’s the good news about the last 6 days. Despite the fact that it is very likely the pathology report from the Thursday biopsy on the spot on my spine will show positive for renal cell cancer, I have confirmation from CT scans, a bone scan and a brain MRI that this small tumor in my spine is the only active metastasis in my body. HD IL2 is a very difficult systemic chemotherapy treatment that would be used if I had multiple mets, particularly in my lungs or brain.
The prevailing wisdom from my research is that I should hold back on the HD IL2 and utilize stereotactic radiosurgery to treat the single metastasis in my spine. So, this weekend will be spent studying radiation therapies. I talked to Dr. John Cabelka at the John B. Amos Cancer Center.
John and his colleague, Dr. Doug Ciuba are in the midst of a major $10 million upgrade to the radiation oncology equipment at our cancer center. The new state-of-the-art equipment that could be used to treat my RCC is still 6 months away from being online. A bone metastasis of RCC is resistant to elimination by lower level radiation therapy. It takes powerful stereotactic radiosurgery to do a proper job on this type of cancer. So, I’ll have to go elsewhere for my treatment. I can’t wait 6 months to be able to have this treatment locally. Drs. Cabelka and Ciuba have weighed in on my situation and they recommend a top-notch radiation oncologist at Emory in Atlanta, Dr. Walter Curran.
Our brilliant Dr. Andy Pippas was recently named a Georgia Cancer Coalition Distinguished Scholar. That award came with a $5oo,ooo research grant to further his clinical research. Dr. Curran is also one of those GCC Distinguished Scholars. We are so fortunate to have world-class cancer care in Georgia. Kathelen Amos is another local cancer warrior who is the current chair of the Georgia Cancer Coalition board of trustees.
If Dr. Pippas blesses this change in direction, I’ll meet with Dr. Curran this coming Wednesday morning at 9 a.m. when I hope we’ll get about killing this cancer in my spine. This treatment is highly successful in most cases and doesn’t come with much in the way of side effects. I might have to have infusions of a drug called Zometa for a year or so to strengthen my bones and prevent other bony metastases from developing.
This is all I know at this point. Although getting this setback has been devastating to us, things could be a whole lot worse. A single spine met is much more treatable than being attacked on multiple fronts in the lungs, bones and brain. I’m going to be thankful for this apparent single enemy and makes plans to take it out. Soon.
I apologize for the length of this post. Some of you may have already bailed before you got to the end. But, if you’re still with me right now, I’m going to be honest with you. I intend to write every word of this journey because I don’t want the next person who hears those words from their doctor, “This is cancer, Mike, I’m 90 percent sure of it,” to feel they’ve got no place to go.
To all of you who have posted on this blog site, in emails and on facebook over the past few days, Jill and I thank you. It is a humbling experience to know so many people care about you. That is the beauty of our developing social media world. We are enveloped in the arms of a loving community of friends and complete strangers who are walking our same walk. If you’ll keep reading, I’ll keep writing. And, I want to say again, that we’re trying to get the email notification system on the blog working correctly. I will get there. But for now, I hope you’ll be patient if you get multiple notifications or no notification of a new post.
We’ll all get through this. Again.