I don’t know quite where to start. So, let’s do the uncharacteristic thing and just get right to the point and maybe that will spare those of you who’re not interested in my usual stories, incessant details and dramatic setups. After all, life is short and sometimes it just makes sense to eat the dessert first — especially if you’re suddenly able to taste it!
This past Thursday afternoon, Jill and I met with Dr. Andy Pippas at the John B. Amos Cancer Center here in Columbus, Ga. The previous week, I had submitted to yet another painless blood draw at the hands of the one of the fabulous phlebotomists in the lab there at JBACC. I was hydrated, also during that week, and had CT scans (with contrast) of my chest, abdomen and pelvis. Just two weeks before that, I met with Dr. Raj Alappan, my nephrologist. The point is that I had fresh labs, scans and updated reporting from the person who is helping us watch over Strainer, my only remaining kidney. All of my systems have been checked and the news we got on Thursday was current and as accurate as modern medicine can make it.
Dr. Pippas gave us the news that we’ve been hoping to hear after living through 15 months of raging hell. “Mike, at this moment you are cancer free.”
He said it, despite the fact you’ll not hear me say it. I prefer NED, no evidence of disease. Not sure why, other than NED seems less provocative. A little more humble as I stand in front of the open curtain staring up at the feet of the “All Powerful Cancer,” complete with flashing lights and smoke. I’m sure as hell not the Cowardly Lion. Despite my fears, I have not been any kind of a coward through this thing. But I’m a little superstitious and just not a fan of appearing too cocky in the presence of something that has the power to kill me or strike me down.
All that said, I appear to have been hugely and wonderfully responsive to Votrient, the powerful tyrosine kinase inhibitor drug I have been taking for the past 15 months. My adrenal tumor is gone. The apparent tumors in my right kidney are gone. The tumors in my spine are gone. I have no tumors in my lungs or in my brain (the places kidney cancer cells love to invade).
Looks like the loss of a hundred pounds, the loss of the cuticles around my fingernails, the loss of ALL the pigmentation in my body hair, the chronic daily diarrhea, the almost daily vomiting, the maddening itching of my skin, the inability to taste food, the ever-present brain fog and some peripheral neuropathy in my feet were all worth enduring to get the news we got from Dr. Pippas on Thursday. We are thrilled at this wonderful news and extremely grateful to our medical team, our prayer warriors, our friends, our church family, our family and all the legions of people who are concerned about us and who have found so many ways to let us know that they care. This is epic good news!
I asked Dr. Pippas, “What do we do now?” “The good news is you’ve got a couple of options,” he said. (This may get a little tedious, but this blog is about what it is like to LIVE with cancer, so I’m going to take some time to let you into my thought process. You’re welcome to read as much as you can stand.) Here are my options: Since I am now almost at a month off Votrient, we can go back on a “maintenance” dose of 200mg daily to try to extend the reprieve from actively growing cancer. That isn’t a great option, because as I tapered off the drug back in January, I was actually as sick on the 200mg dose as I had been on the full 800mg dosage. Why would I want to do that? Well, I don’t.
The next option is that I can stay off the Votrient and be extra vigilant with CT scans every three months for up to a year and reevaluate again at the end of the year. This is a better option, because the prevailing wisdom (although this wisdom is only anecdotal, as there isn’t any real data to support it) is that for people like me who are excellent responders to the medication, there is every reason to believe we’ll respond just as strongly when and if the medicine is restarted. Andy strongly cautioned me about a couple of things if we choose this option. Although my taste buds have blissfully re-awakened, I have to keep my weight down. My daily routine needs to embrace a spartan diet, mostly vegetarian, with an occasional splurge to keep from going crazy. He wants me to keep my weight at or near where it is today. He also wants me to add back as much exercise as I can stand. Bike riding is a definite. I also need to be lifting some light weights and walking. I’ll need to get myself motivated to get this done. Plus, I’m still really weak from the pounding my body has taken over the past 15 months.
Dr. Pippas is in communication with our medical oncologist at Duke, Dr. Dan George, who is familiar with my case. I’m also making contact with Dr. Hans Hammers (through a friend) at Johns Hopkins in Baltimore who is a world-class kidney cancer specialist. When we get those pieces of feedback, we’ll sit down with Dr. Pippas and make up our minds about what we want to do. My guess is that we’ll likely choose the second option and stay off the Votrient and remain hyper-vigilant going forward and hope and pray the cancer will leave me the hell alone.
I feel like a new man right now. I feel my strength coming back. Next time you see me, take a look at my eyebrows. My hair is beginning the process of growing back in with color. If I get to stay off the drug, the pigment will come back into my hair and it will grow back in some darker shade. Maybe it will be straighter, or curlier. We don’t really know what to expect. I’m just happy to begin to see some hope that my daily prayers of being able to get old with my Jill, see our sons find love and hold a grandchild or ten are looking better. Thanks be to God!
Thanks to all of you who are following our progress. If you know of anyone who is struggling with cancer, especially with a kidney cancer diagnosis, please forward a link to this blog to them. Those of us who are living with cancer need to see that the news doesn’t always have to be bad. Although, it damn sure feels like it sometime.