It Can Be Frustrating

I keep telling myself it’s high time I write an update. Out on each ride I churn through thoughts, usually coming up with some ideas of motivating things for myself after chewing on the more difficult issues. Those are what I think to sit down and write about because frankly they are more interesting and motivating for myself and sharing with others. Then I sit down to write, get a few things down and just…stop. Because it doesn’t quite feel right.

I had intended to write some of the really great thoughts and experiences I had recently, in my outdoor therapy rides, about my great family vacation with Heather’s extended family, and so much more. And I still will. I just haven’t been able to fully embrace writing about that quite yet.

It Can Be All Consuming

The first thing people usually still ask me when we meet is “how are you feeling?” I get it. It’s what is present in my life. It’s what I’m known for and because that’s what I usually talk about. Hashtag fight cancer. It’s what’s on my mind every day in some way, shape or form, so that ends up being what I share. So that’s what defines who I am publicly.

Either that or cycling.

I’m ok with that. That’s my life right now, and that’s what takes most of my focus. Cycling is my respite, my way to break free from the physical and emotional toll of health issues. I’m no super cyclist, but I’m out there putting in some miles and enjoying the hardship I can push though and make progress. There are worse things than being known as a cycling enthusiast. Or a cycling nut. I’ll take either. That’s because I’m not making any progress on that other major thing in my life.

You know, that cancer thing.

This week was one of more frustration on that front. A month or so ago I had my last appointment with my surgeon. They were surprised and frustrated that my pathology report came back as “No results available. Despite multiple attempts the assay specific minimum requirement necessary to generate a result were not met for this specimen. This may be due to nucleic acid concentrations below the detectable limits for the assay or factors influencing the integrity of the specimen.”

Uh, say what?

That sounds like we had a bad tissue sample, or the sample was mishandled in a way that made it not viable for the testing needed to determine the specific mutation(s) I have. After that appointment the surgeon’s office said they would get to the bottom of it and push for a new test. Goodness knows we had plenty of tissue available for testing they said.

A week. Then another week. Then more. I kept calling back to see where things were and looking for results. I kept getting a “still working on it, they will call you back.” Not good.

Last week I called yet again and finally got a call back from the nurse in charge of all this. I was told “We don’t have anything more. They weren’t able to get a successful test and we’ve done all we can. You need to go back to your Oncologist to pursue anything further about your future treatments.”

I was being punted. Sent back to to the other team. No longer their concern.

It didn’t feel good. It was downright frustrating because when we spoke in person they were soundly on my team and “going to get to the bottom of this.” Now, I’m out and with nothing to point me in a good direction. No treatment. No one fighting for me.

Frustrating.

I logged into IHC My Health to try and read whatever new reports were posted. You see every test I have IHC posts the reports to my records so I can see them. Patients rights and all I expect. Only there wasn’t anything new since the report just after surgery. No new test had been performed or at least reported. What does that mean?

I suspect there was a mishandled tissue sample, and the rest of my tumor mass wasn’t kept. Why would they keep those huge blobs of alien life form? This is all my personal speculation coming out of a realm of frustration, but I think someone screwed up and now I can’t get the mutation report I need to search for any clinical trial or fringe treatment that might give me more quality of life and time.

Insert stress relieving profanity here.

Actually, strike that. Instead I just head out on the bike and put in some two wheel therapy. That’s my release of choice. So this last week I’ve put in over 100 miles on the trails and roads in search of some kind of direction or at least the calm I need to get back focused on solutions rather than the problems.

Oh, and add to that I finally decided to do something about that pain in my neck. No, that’s not naming someone specific, that’s an actual pain in my neck. You know the one that’s been nagging since around the time of surgery. I’ve been chalking it up to lingering issues from that unfortunate cycling accident a month before surgery. It’s been getting worse rather than better, usually leading down to sharp and lingering pain in my right shoulder - the opposite of the one I landed on in the wreck - and my arm going to sleep.

Segue to doc visit with x-ray showing a too narrow gap between my C5 and C6 vertebra. Jump a few days later to an MRI that confirms a degenerated disc causing a narrowing of the neural foramen and impingement upon exiting the right C6 root. A.k.a. a pinched nerve. Great. So likely I’ll be having at minimum a steroid shot for some short term relief, but more likely needing a small procedure to try and snip and stitch that area to get the nerve free and relieve pain. Yeehaw.

At least I now know it’s not all in my head, and wasn’t really from the accident. In fact the accident likely just jarred it, and all the recovery time has led to a weaker neck and shoulders allow this to shift around. The degenerative problem was present before and now just been let loose in a painful way. In fact I can think back over the last few years to increasing issues turning my neck that direction and periodic issues with pain. So now is just my lucky time with more on the plate.

That’s just one more thing though. We got this. A diversion if you will.

It’s a tough daily battle in the mind along with the body. Every new pain, creak or discomfort means more. Is that a tumor returning or is it just my abdominal muscles aching from the ride yesterday? Why is my back hurting again? Why do I feel tired. Oh yeah, because my neck wouldn’t let me sleep. Or is it something else? The wondering and not knowing if this time of no chemo or other effort coursing through my body to try and fight back this alien within is sometimes harder than the physical discomfort that comes from taking the poison in order to fight. Sure it feels great to not be on a daily oral chemo, but it also feels like I’m going to pay a price for that treatment vacation. Ignoring the problem isn’t going to make it go away.

What’s Next?

Back on the cancer front, I’m just at a loss. Essentially I got nothing. I’m trying to be healthy. I continue to work on my recovery with exercise, better eating again and getting working again in a way that still allows me to focus on recovery, family and life. That’s about all I can do without any other direction or treatment option on the docket.

They’ve scheduled me for a new CT scan next week. This is supposed to be the “baseline” scan post-surgery to show where the organs have settled in and see if anything nefarious has reared it’s ugly head already. Even though we know cancerous tissue was left behind around my small intestines, the expectation is it won’t show up on the scan because it is too small. But in nearly three months, who knows? We might see growth, we might see nothing. But one thing we know for sure, is I’m not in “remission” but just no visible cancer on the scan. But still, it’s a baseline to measure against with future scans.

After that my current plan is to see the oncologist and get his take on the scan. Then request we do a search for a Sarcoma specialist starting locally and hopefully covered by my insurance. If that doesn’t work, we push out further and travel to a better option if it exists. Doing nothing just doesn’t sit right with me. This is my time to fight when I’m healthy enough and able to take the beating that is always associated with treatments. I’m just hoping that something out there exists that has at least a hope to make a difference, because right now I’m just being told to enjoy the time I have and hope for the best. Be healthy like I’m trying to be and live the quality of life that surgery has given me. I’m going to do that, but I need more. I need to be making an effort. I need to fight. So we’ll keep searching for a better next option. And in the meantime, I’ll keep riding, pushing, and living.