I’m continuing to feel better. In fact, I almost feel like a real human being again! I’m eating lots of different foods, feeling more energy, and even doing some fun stuff again like hitting golf balls and going to basketball games. It feels great to be more active and energized again. Someone told me the other day “You look way less horrible than you did a few weeks ago.” Thank you very much.
We had our post radiation / chemo scan and got the results back. Before sharing those results, I need to share a little back story.
During my first week of radiation / chemo at the beginning of February I felt two new lumps in my neck. I went in to my doctor who biopsied the lumps and low and behold they came back positive for cancer. It was the same cancer from my tongue — squamous cell carcinoma. To understand the extent of the spread I had a CT scan and we found a total of 5 tumors in my neck. Somehow my tongue cancer had sprung a leak and spread to the neck even though we got clean margins from the surgery and found no signs of cancer in the lymph nodes that were removed. When one of my doctors first told me his perspective of how my cancer was behaving, he called it an “[expletive] monster”. Not sure if that is the formal medical term for it or not but sounded spot on to me.
So for several months we’ve known about these tumors and have been praying that 6 weeks of radiation and chemo would eradicate the cancer and get us back ahead of the squamous cell. As the treatments wore on (and wore me down) we could still feel the lumps in my neck so we were prepared for bad news on my latest scan results. All of this culminated in the news we received about a week ago following my May scan.
The tumors in my neck were smaller than they were in the February scan, but they were all still there. They also found a new lump in the left side of my tongue about the size of skittle. Not good news. But it was mostly expected and didn’t really change much for us. We had already been planning on a second line of treatment — immunotherapy drug called Keytruda — and the scan results confirmed that we needed to get started on that treatment immediately.
My reaction to the news certainly reminded me that I am human — it put a lot of questions in my mind. Why did I have half my tongue cut off? Why did I get a max dose of radiation that blistered my mouth and throat so badly I couldn’t swallow my own spit for almost two months? Why did I get chemo that had me throwing up everyday (vomit + blistered throat = unhappy customer) and buried me in fatigue? Was the last 5 months of suffering completely pointless? Why isn’t “treatment” working for me? [Expletive] monster was certainly the term bouncing around my head.
I’ll end the post with some closure on the questions above, but first lets talk about what this all means.
- The squamous cell is the more serious and important cancer to fight right now. We’ve got to get a handle on it and so the hodgkins lymphoma in my hip will continue to take a back seat for now.
- When surgery / radiation / chemo don’t put you into remission, the next line of defense for my type of cancer is immunotherapy. Immunotherapy uses drugs that work with your immune system to help your body fight and kill cancer cells. Keytruda was just approved for squamous cell back in August of 2016. During its clinical trials it showed positive results in about 20% of patients.
- I had my first Keytruda treatment three days ago and I have felt almost no side effects. Its not toxic like chemo and only slightly increased my fatigue. No nausea, no turning yellowish green, and no mouth sores.
- I’ll do a Keytruda infusion via IV once every three weeks. It takes about 45 minutes (compared to about 5 hours with chemo).
- I’ll have a follow up scan in 3-4 months where they will compare the size of the 5 tumors in my neck and one in my tongue. They will also look for any additional spread and see the impact on my hodgkins lymphoma. If Keytruda works, it should help both cancers and it is unlikely I’ll need to do chemo for the lymphoma.
- There is no time table for Keytruda. Since it is fairly easy on my body, I can take it indefinitely as long as it is working. Some patients who have taken this drug for other cancers have done it for 4-5+ years. My understanding is that some of the patients in the 2016 clinical trial for squamous cell are still taking the drug and its been over 3 years now since the trial started.
- I’m actually pretty optimistic about this treatment. I’ve read a lot about immunotherapy treatment outcomes and when it works, it seems to work really well. If this doesn’t end up working, we still have a few other options.
So what does this really mean for me?
Look, even if radiation / chemo had worked and left me in remission from squamous cell, this is a fight I was going to be in my whole life. Having to continually fight cancer my whole life is my reality. I’m understanding that better now. It’s always going to be there and I’ve always got to be ready for the next stage of the fight.
We don’t get to know the end from the beginning. We don’t get to know which will be the fastest, most efficient path to healing before we start the journey. There is uncertainty and unknowns at every juncture.
So were the previous 5 months of treatment pointless? The radiation made my teeth way whiter and I no longer have to shave my face since my facial hair is permanently singed off. Were those the only two lasting results from my treatment?
No way. Not even close.
Regardless of what the treatment did or didn’t do to my cancer, the experiences changed Camilla and me forever. One of my friends asked me last week what we have learned through this experience and I think Camilla put it best:
Trust in God.
Last year Camilla and I would have told you that we believed in God and His plan for our family. And while it would have been with conviction and sincerity, our declaration of faith would have come from a perch where for the most part “God’s plan” seemed to be exactly what we would have picked out for ourselves anyways.
But what’s your faith like when it seems like the direction God’s plan is taking you is not what you would choose? In fact, it’s like the exact opposite of what you would choose? Do you still believe? Are you still devoted?
What this experience has taught us is that our faith in God and trust in his plan IS NOT dependent on everything in our lives working out like we want. I believe in God’s miraculous healing power and whether or not I see it in my own situation does not make it any less real to me. He is the Almighty and All Powerful God who is also my loving Heavenly Father that knows me personally. Not getting my big break with cancer after five months does not change that. We are still “all in” with God and His plan. We don’t know how it will work out, but we TRUST it will work out.
So would I do the treatment all over again if I knew from the beginning it wasn’t going to work?
I’m not an idiot.
But having gone through it already, I’m grateful for the people that we’ve become through the process. It’s preparing us for this next stage of the fight. It’s on.