The definition of torment: having to listen to music from “The Rocky Horror Picture Show” for hours as we travel. This is one of the few albums Kevin purchased from iTunes, and he gets his money’s worth.
When I look at the calendar I realize it has only been a few days since we learned our battle with cancer was starting again – but it feels like years. Kevin and I were talking about this phenomenon the other night – and how this time warp is exactly how our courtship was.
During our beginnings, we felt we were trying to keep pace with an uncontrollable hyper-speed warp, as the world around us was still on regular time. While fun, it was quite frustrating. Things were so fast at that time I kept a journal for several months to help me remember things when I look back. Missing from that initial dating time were things like infatuation or nervousness. Rather than getting to know each other, it was more as if we were getting to re-know each other. We were strangely comfortable, as if we had known each other for years. Our meeting was one of the most bizarre happenings of our lives.
After a few months – finally – our time was in sync with everyone else and things became comfortably normal. I take this current hyper speed we’re going through as a good sign. I learned from that experience that there are times in life when you can be plucked out of one situation and re-sorted into the place you’re supposed to be – sometimes without your conscious permission. A long time ago I learned nothing is accidental, but as if life itself is sentient, these past few years have demonstrated that there are no chance meetings, no accidents – we are where we’re supposed to be. Life proved that synchronicty is a part of its mysterious, beautiful math.
PET scan results – Stage 4 Melanoma
After hand delivering a bunch of CT, Xray, PET and other reports, we learned the PET scan confirmed widespread metastasis – a frightening finding. However, as best as I could interpret, the good news is that so far this only seem confined to muscle, and no additional organs beyond Kevin’s lungs. He will have a brain MRI tomorrow to be sure there are no brain tumors – a common occurrence with melanoma. If he does, then he may go with radiation for his brain.
We have not given up hope, but we are changing many things drastically to accommodate a new lifestyle. I have figured out a way to downsize our monthly spending to 1/4 of what we spend now. Freelancing is busier than ever, which allows me to work from home or a hospital. Kevin is a quick study, so he’s starting to do overflow work for me, if he has the energy and feels up to it.
Course of treatment
Kevin will likely go with the Interluekin-2 and Zelboraf (Vemurafenib) combo initially. The side effects are somewhat tolerable to most. This also requires a blood test to be sure Kevin carries the BRAF V600 gene mutation – if not, then the treatment will do nothing for him. It’s quite likely he has this mutation, however, since over half of the population does. This combo will reduce or stop melanoma’s progress for about 5-7 months. Then, melanoma comes back and continues.
Yervoy (aka Ipilimumab) was also reccommended during this initial treatment. Often reserved as a follow-up to the IL-2 / Zelboraf treatment, the oncologist wanted to do this at one time. Not sure why, but I’d like to look into that further. The side effects also seem tolerable – this treatment helps control the growth of cancer cells from melanoma which cannot be removed surgically.
The second strategy after the IL-2 and Zelboraf treatment is done is to move to Interferon. High dose Interferon requires assistance in ICU because it can cause great damage to organs and has a wide variety of side effects. While this sounds like a terrible treatment to undergo, there’s a 55% response rate for partial or complete response. While most participants in the study survived an average of 15.5 months after the diagnosis of metastasis, 10% were disease-free after 4 years. So, while a colossal and unspeakable pain in the ars, it might be an effective treatment.
More than ever I wish to legalize medical marijuana. It seems ridiculous to me that someone with cancer can’t just try this if they want to. To use it we must move out of state and prove residency. While I can’t find anything that says it doesn’t work or is simply a hoax, all evidence is still anecdotal. It’s a big risk to move away from everyone to try a treatment like that.
A word about radiation and chemo
We get asked a lot about radiation or chemo. Since melanoma is systemic, it often cannot be treated by surgery, chemo or radiation. This doesn’t mean those treatments are never used, it simply means that treating systemically is more effective – especially when there are issues like tiny cysts or nodules in various places. To be blunt, with metastasis you simply can’t keep cutting since melanoma can pop up anywhere.
Bad timing for a kidney stone!
As if we haven’t had enough between cancer, lawsuits, taxes, and reducing to one income, my body decided this was the perfect time to deal with a kidney stone! I’m oscillating between intense nausea and pain, popping my pain meds precisely every 4 hours and being too groggy to do anything – including work. I will meet with a urologist later this week / early next, and probably have the dreaded stent and possibly lithotripsy. Worst of all, as the primary income generator, I’m simply too zoned to work. Perhaps the only good thing about being heavily sedated is that I’m getting some much-needed rest. But during lucid moments I panic about how I’m going to pay utility bills. I think I can swing it, but I must get better immediately.
Fortunately, Kara and Jordan came in town to visit! We enjoy their company, and their presence also allows me to rest a bit before our next round of cancer battles. After a great dinner made by Kara, Kristin, Kara, Jordan, Kevin and a friend, are all laughing in the living room by the fire as I write this. Laughter is welcome!
I need to recover fast and be at the top of my game. I cannot stay down for long, and yet am forced to sleep. It’s incredibly frustrating.
Living with the guilt of having to ask for help
As I’ve said many times before, when Jesus said, “It’s better to give than to receive” he really meant that literally. In fact, it sucks to receive and I’d much rather be giving, since giving is powerful and affirms prosperity on some level. Receiving is terrible, and reminds us that we need, need, need. We cannot do it all, we feel defeated, and sometimes we can’t do anything at all – such as my kidney stone has proved. It’s much better to be in a position to give than to receive, indeed.
Throw the guilt away
Guilt serves no purpose when you’ve done nothing wrong and things are out of your control. Plain and simple.
When discussing this guilt, I told Kevin this time period should be looked upon as a sabbatical for him. It will be work, but it will be working with joy. He must withdraw from the stress of life and making money, and focus on his health – mind, soul and body. He does not like this idea, and says he has a hard time dealing with the guilt he feels for not providing, and for accepting help from others. I told him every time he feels guilty, to write what he will do to give back when he’s well on a small piece of paper. I told him to keep a jar, so when he recovers he can pull a give-back to-do from his jar and pay it forward for someone else.
While working with joy is happy work, it still requires a lot of discipline. This is a time for him to retreat within, and every treatment, every massage, every meal, every shower will be a time for him to connect mind, body and soul. This requires focus and discipline. It also requires help from others.