"How I'm doing"

It’s been a tough few weeks. I think the leg surgery has been a huge success - I’m scooting around the house easily, sometimes taking the stairs two at a time as I did before the surgery, and only feel pangs of pain in my femur from time to time. I’m able to go on walks outside that are about a mile long before my leg starts feeling weird. My surgical scars are healing and I’m working to recover some flexibility that will allow me to resume putting on my right sock and sitting cross-legged on the floor, but those complaints are small potatoes to how tough it was the night after the surgery when they had me on barely any painkillers.

What completely knocked me on my butt recently is that they changed my diagnosis from pancreatic neuroendocrine tumor (PNET) to metastatic paraganglioma with a MAX gene mutation. Both are mouthfuls to say, but metastatic paraganglioma is a much rarer cancer than PNET. 2 out of a million people are diagnosed with paraganglioma and only 1% of those people have my specific mutation. For most of my doctors, I’m the only patient they’ve seen with my condition.

What this means exactly is that I’m far off the road of normal, “follow-these-steps” treatment. There are few specialists for paraganglioma cancers. There’s also no treatment that I would consider an “easy, clear win.” Most of the treatments I know of have a mid-range success rate (around 50%) and if they are successful only function for a year or two at most. The rest of life likely will be finding a treatment that works and riding it for as far as it will take me, then finding a new one.

The result of this was that I had the sensation of discovering I had cancer again. When I first was diagnosed, I was in shock, I cried, I held my wife and we cried together. After a few days of thinking and talking to doctors, I got some answers I needed to get the footing I needed to move along in life. I compartmentalized hard questions like “how long will I live?”, “what will my life be like?”, “will I be ok?” and “what’s going to happen?” and I gave them the best answers I could at the time to worry about later so I could do what I needed to do.

When my diagnosis changed, many of the assumptions and compartmentalizations that held my mental cancer management together exploded and I was back to being in shock and crying and not having answers to anything. My old answers don’t fit into the new boxes and I’m still trying to come to terms with all there is. I think I have got things back together again, but I’m more aware now of how fragile all of this is.

Physically, my biggest challenge is my radiation treatment. I’ve had 6 rounds of radiation so far, 1 every weekday, most focused on my neck and a few zaps in my left thigh. I am happy to report that much of the pain in my arms has gone away and I’ve almost regained full range of motion with them. With slight pain I can now sleep on my sides. I still have a lot of points in my neck, back, pelvis, and thighs that are causing me pain, but I’m delighted that something has gotten better. The challenge with radiation are the gosh darn side effects.

I get zapped every weekday morning at 8am and it completely drains me. Afterwards I go home, crash into bed, and sleep for 2-3 hours. I typically feel run down the rest of the day. It’s tough to have a life in that situation.

Exhaustion sucks, but seriously #$%&# nausea. I love eating. It’s one of our primal joys as animals. I like cooking, I like appreciating food, I like sharing and receiving it. When you’re nauseous, the smells and sights of your favorite foods twist your gut, and eating is a messy gamble of “will this stay or go?” Constipation is a frequent side-effect of pain-killers used with cancer pain, and it makes a sinister combination of ailments. Since I’ve gotten back from my surgery, I’ve lost 15 pounds involuntarily. Bessie has demonstrated the patience of a saint trying to find foods that I can eat and can stomach and putting up with my tantrums about being sick of eating and feeling full and mighty queasy. We are working to get my digestive system functioning as it should, but when food becomes bitter medicine, it’s not a great place to be.

I have two more weeks of radiation (8am every day for the next two weeks), and then I start treatment on my cancer. It hasn’t been decided, but it will likely be a form of chemotherapy. Unfortunately, the gentle path of CAPTEM that was the path of the first diagnosis is no longer available and the chemo will be of the typical form where the nausea level will be high and the chances of keeping my eyebrows are low.

I wish this whole thing could be happier or funnier, but life has been a struggle. I want to provide my dear readers with humorous pillows to cushion them from my sad truths and pain. I want to provide the reader with a confidence that everything will be alright. I do believe it’ll be alright, but it’s more blind faith than evidence-based confidence at this point.