Restarting treatment

So it's been quite a while since I've posted. In July I moved back to Illinois to be closer to my church and friends. I've settled into my apartment after some issues with a water leak and the refrigerator freezing everything. It's very convenient to my church, so that part has been great. I have been able to spend some good time with friends and return to my small group as well.

On the other hand, neuropathy in my right leg from radiation treatment has restricted my mobility and just the overall deterioration of my physical condition from being out of work for two years has taken its toll, so I haven't been quite as active in getting out to see everyone as I'd hoped.

However, I did make it back to Maine a couple of times for my niece's birthday and as a spur of the moment trip a couple of weeks ago. That trip was motivated by the fact it was becoming more and more clear that I might end up back on chemotherapy treatments. The timing would mean that I might not make it back for the holidays so I decided to go at least once while I still could. It was fun to surprise my family, which is something of a tradition for me.

I've been off chemo since June of last year, because it had got to the point that I needed a break. I've never loved being on any form of chemo, but the one that I started in the summer of 2017 really did a number on me. Along with issues of nausea, skin sores, abscesses under my finger and toe nails, the real issue has been severe and unpredictable diarrhea that is caused by one of the drugs. I'd first taken that drug in a different regimen back in 2016, and after 5 rounds I chose to remove it, because it made it virtually impossible for me to trust my body. This is complicated by the after effects of some of my previous surgeries.

Last June, the tumor that had metastasized to my lungs weren't gone, but they had been shrunk some and I knew that I needed a break of at least six months. To be honest, part of me wanted (and still does) to stop the treatment permanently. In the intervening months, I've had 4 CT scans each showing growth of a few millimeters every 3-4 months, seen 3 different oncologists, including one at the Dana Farber Cancer Center in Boston, and all have suggested that I should return to treatment, eventually.

The treatment that I was on is one of the last approved treatments for metastatic rectal cancer and it was still somewhat effective (a few mm of shrinkage every 3 months or so). However, its side effects and the negative impact it had on my physical (except the cancer), mental and spiritual health made me very resistant to resuming treatment. That's why I had decided to wait until now.

Until recently, I haven't had any physical symptoms from the cancer itself all the way back to when I had proton therapy done on a recurrence on my spine in 2014. However, recently I've developed a persistent cough, which I expect is related to tumors in my lungs, though I think that hernias from my surgeries are a complicating factor as well. The most recent scan didn't show any restriction of my airways or arteries in my lungs, but they're getting large enough that my oncologist here in Illinois was concerned about waiting much longer.

Nevertheless, I have really struggled to make a decision. I recognize the risks of letting the cancer continue to grow. I've been blessed the last 12 years (in January officially) to have a relatively slow growing cancer, and to have had surgical and radiation options when things were more aggressive, but I know that doesn't mean it will always be the case. It doesn't make sense to give up completely on a treatment that still works.

However, I am very worried about how the treatments will affect me. I worry that it will help my cancer, but destroy my wellness in all other areas. I haven't really rebounded that well from the previous year of treatment that I had, so I would be starting off from an even lower level of health. Also, the reasons that I came back to Illinois, friends and church, would become much harder to be involved with on treatment. Living close to church and my small group helps, but when the side effects are the worst I don't really want to be around people. Also, the unpredictability of my body during treatment increases my anxiety exponentially when I do try to get out.

From the title of the post you have probably guessed that I am going to be resuming treatments. My first one will be Monday, November 11th. It was almost an impossible decision for me to make and I don't really have any sense of peace about it. To be honest, I'm dreading it. There are moments when I think about backing out. In the end, if I'm going to do treatment again this seems like the time to do it, but I'm not convinced it's the right decision. I worry that even if I get to take some breaks down the road, that I'll never really recover from the drain it takes on me.

So obviously, I could really use your prayers that the treatment wouldn't affect me as much as it did in the past. The oncologist in Maine had some ideas for trying to control the diarrhea, but when I mentioned it to my doctor here he seemed skeptical (and it seems to involve daily injections.) If there is some way that side effects could be lessened or at least more predictable, it would make things more manageable. The other side effects are still very frustrating and wearing, but they wouldn't leave me feeling as isolated.

My brother, Mark, is flying in next weekend from Maine, and my sister, Janet is in Chicago, so I am well covered for this first treatment. I appreciate that their immediate reaction was to make time and effort to be here for me. I am also thankful for all of you who have sent me your encouraging thoughts, supported me financially and prayed for me over the last 12 years. It means so much to me!