Murphys, CA…This week finds me just buried in medical arrangements. I am dealing with insurance authorizations, consults, ultrasounds, CTs, and radiation. After more than two months without any appointments, I guess I should feel rejuvenated and ready to tackle anything. I pray that God continues to bless me with relentless strength, because we have discovered another small tumor in my brain.
I have been taking the recently-approved Zelboraf (vemurafenib) twice a day for eight months now. Some days, I feel like it is really wearing on me. Other days, I virtually forget I’m even taking it! I have gotten so used to the joint pain, I barely notice the limping when I get out of bed in the morning. I guess most people approaching forty years old have a bit of that anyway! The sunburns continue to be the worst. I love being outside! I was raised at the beach, and boating and camping and riding bicycles. I can’t help but slow down when I drive over our local lake and just stare. I practically drool. So, this summer is going to be rough. Within 2 minutes, my skin starts to itch and develop hives. In about 5 minutes it actually begins hurting. In ten minutes, I am burned and blistering. With less than 15 minutes of exposure, I will have to endure an allergic reaction.
The last weekend in April was the American Cancer Society’s Relay for Life here in Calaveras County. I attempted to stay the full 24 hours, including delivering a speech in the sun that lasted almost 15 minutes. Needless to say, I woke up the following morning with a completely swollen face. I looked like I had been stung by a bee! Or for those of you who’ve seen the movie “Hitch” with Will Smith, remember when he had the shellfish reaction? Yeah… that was me. The reaction lasted a couple days, and resulted in peeling that still continues 2 weeks later.
However, I did manage to have a fantastic time. My speech had a great response. It also caused people to come over to my camp and meet me in person and to want to have a conversation with me. Several people wanted to wish me well, or to ask about the details of my illness, but most just wanted to talk about my faith. I can’t imagine anything I’d rather talk about! It made the day so fulfilling and to go by so quickly. The wonderful man in my life (besides my dad, my son, and God) videoed the speech and posted it on YouTube so it can be viewed by anyone battling cancer or just in need of some inspiration. It is titled “Catherine Lewallen – RFL 2012” and you can also visit my Facebook page for a link.
Anyway, last week had me back at Stanford for my usual scans. Actually, a CT scan had to replace my PET because insurance is cracking down on regular PET scans. I guess they’re tired of paying $11,000 every 6 weeks. Anyway, the CT confirmed our hope that the Zelboraf is still working. The tumors seem to have reached their maximum response. That means that the few remaining areas are not shrinking any more but they are stable. We praise God for that amazing gift!
The only area we knew the Zelboraf could not protect is my brain, and we did find a new lesion in the right frontal lobe. It is so tiny still (only 2 millimeters) but we will certainly deal with it immediately. We are considering two plans of attack. The first will be the cyber knife. Many of you remember from my blog on caringbridge.org that I experienced the gamma knife procedure last September for my first brain tumor. We did this at UCSF and it was relatively simple. I had been pretty nervous about it (after all, we were disintegrating part of my brain with a radioactive laser!) but in fact it was virtually painless and only left a bit of a headache for a few days. In addition, it literally works every time. You gotta love that! Few cancer treatments can boast 99% success like the gamma knife does. The only residual effects are some swelling and bleeding even still today. But God continues to heal it, bit by bit, in His time, which is always perfect.
At Stanford, the procedure is called a cyber knife. My understanding is that the radiation is just derived from a different source. Also, at UCSF, they screwed a “halo” through my skin to my skull in four points. That was the least enjoyable part of the process! In the cyber knife, they use a custom-made mask instead, which sounds a little claustrophobic I must admit, but physically much more comfortable. So, that is in my near future (probably the week of May 22nd). It is incredible the way God has allowed science to evolve.
We are also looking into starting me on an additional treatment, with the hope that it will protect my brain a little better. It takes up to six months to be effective, so in case the Zelboraf stops working, it is giving me time to be prepared with some “back up.” It is called ipilumimab and would require a trip to Stanford every three weeks for an infusion. It would also bring with it a whole new set of side effects to endure. To top it all off, I will be the first person in the world to take this drug in conjunction with Zelboraf. I am definitely doing more than my share of contributing to cancer research at this point! So the leading doctors are researching the possibility, and I guess they will let me know when they’ve reached a decision. I am confident that God will give them the discernment to care for me in the best way possible.
In addition to all this, between now and then, I have to make a trip down for an ultrasound of my ovary where we found a new growth. My oncologist does not think it’s cancerous, but of course, better to be safe than sorry. We are also working on getting my records from UCSF and getting authorization from my insurance. It is such a red-tape nightmare. I’m glad I have Stanford on my side. The other day I called to talk to my coordinator and I tried to reference who I was. “Hi, this is Catherine Lewallen… I have melanoma… I have a brain tumor… Umm… We are trying to schedule a cyber knife… Well…. We were struggling with some insurance paper work…..” The coordinator finally puts me out of my misery by saying, “Catherine, you are my patient. Please be reassured that I know exactly who you are.”
I love Stanford.
So, it was interesting to observe the people in my life reacting to this new tumor. My parents were of course devastated until they sensed my calm faith. It’s amazing what God can do. I am not excited about the tumor, but I’m certainly not afraid. We’ve zapped one before, and we very well may zap more in the future. But I will persevere and do it with my head held high. My nine-year-old was not worried at all. I just confidently told him it was just like before and that my medicine was still working and so my son is confident as well.
My greatest concern was for my “newest addition.” If you can believe it, I have been blessed by a relationship with a fantastic Christian man. He has experienced my cancer from afar, but this was the first set of appointments he has endured and the first set of “bad news” he’s had to hear. I watched him with great trepidation, ready for any sign of him running in the other direction! I have such guilt over putting people who care about me through all this cancer mess. I certainly wouldn’t blame him for deciding this was all too much. Amazingly enough, God has equipped him with the same courage that He has given me- complete peace and confidence in His plan.
We believe wholeheartedly that God puts each of us in the lives of others for a reason. We both refuse to operate our lives out of fear. We trust in His Love, and particularly in His Word expressed so beautifully in 2 Timothy 1:7, “For God has not given us a spirit of fear, but of power and of love and of a sound mind.” So, now I have something else… someone else… for whom to be grateful. How does God continue to give me so much?