Last week I resumed Zelboraf, the chemo pill I was on from April through September. Even though it was still working I stopped so I could take Ipi (aka Yervoy) which is an immune boosting therapy. Ipi has longer lasting responses and the potential to teach my body to fight its own way out of this melanoma mess. I still want the brass ring. No cancer. No doctors. No drugs. Living long enough to raise my three kids.
Readjusting to the Zel has been itchy, rashy, and painful. My body feels like a war zone. I’m exhausted. I sleep a lot. I have chemo brain and forget things. Thankfully so far I’ve escaped intestinal problems from the Ipi and bad headaches from the tumors or radiation. My bp and heart rate have been back in the normal range for several days now. I take that as a good sign. I’m scheduled for my fourth and final infusion of Ipi on December 3rd. All in all, pretty good so far on both drugs. No hospital stay. I hate, HATE the hospital.
I try not to complain about how I feel or gripe about my house-arrest. Every day I open my eyes and say a thankful prayer. I’m grateful to be here with my family, my third holiday season as a metastatic melanoma patient. I can take care of myself and put a turkey on to bake before I get exhausted and need a nap. I can think clearly, speak, and hug my husband and kids and tell them I love them. I have more friends than I can count. I’m inspired by the most incredible people every day.
I am learning the hardest lesson of all for me – surrendering to what each day brings. Even when I’m suffering, I try to offer up a prayer that something good will come out of it.
Although I can’t drive and don’t have much energy, I am absolutely humbled by our volunteer army, willing to jump in when the school nurse calls, take me to my appointments, and make sure the five of us have dinner. They are driving me crazy checking in on me and offering to take me grocery shopping. It’s awesome. It’s a huge weight off my and Alan’s shoulders. I believe he has it harder than I do. He has to keep working, pick up my slack, and face each day with his game face on wondering if soon he will be raising three kids alone.
As a cancer patient I used cling to my scans as a license to live again for another 8 or 12 weeks. The anxiety leading up to the scans can be crippling. Yet the joy of another holiday, birthday, or cancer-versary celebrated feels like an incredible victory.
I recently celebrated my birthday and it was pretty special. If not for my Vanderbilt doctors, I wouldn’t even be here. Our most memorable moment was at dinner when our six-year-old raised his hand and said, totally out of left field, “Wait, aren’t we celebrating tomorrow night with a whole bunch of people coming over?” Alan’s face went from “What just happened here?” to “Maybe I could do it” to sheer terror in seconds as he thought I suddenly might be expecting a surprise party in 23 hours. It was hilarious. That kid is a troublemaker.
According to my cardiologist my heart function still looks good but he wants another MRI in 2 or 3 weeks to check on the tumor. And then, what? I don’t know. Open heart surgery seems ludicrous – assuming I survived, I would still have an incurable form of cancer. I’m already on the two newest, best, FDA approved drugs for melanoma. No clinical trial will ever allow me. It is all in God’s hands and I remain hopeful and trusting in Him. I’m going to assume the drugs and my immune system are working together and killing some melanoma big time!
It has been a hard year for our family and I certainly don’t wish for another one like it, for us, or for anyone. Telling your family, especially your children, you have brain and heart tumors not once but twice is horrible. I was told I was cancer-free in January and nearly cancer free in September, only to have the rug jerked out from underneath me. However we have also been blessed in innumerable ways, large and small and we are very grateful.
If it was going to be your last Christmas would you want to know? If you knew, would you tell anyone? What would you do differently? For me, I was sure 2010 and 2011 were my last. This year I will just thankfully take it as it comes.
Peace and hope to you all this wondrous season,