Surprising Results

I had another scan and oncology appointment earlier in September. I hadn't been to see the oncologist since late May. At that appointment, he recommended I start a course of immunotherapy. My cancer is rare so there are not many treatment options, and no immunotherapy treatments that are specific to it. But he had seen some cases where this particular course of immunotherapy seemed to be therapeutically beneficial, and so he was recommending that I try it. I had mixed feelings about it. While the side effects are not nearly as nasty as they are with chemotherapy, there are side effects including some that are potentially quite serious. I decided to postpone the treatments until the fall so I could have the first "normal" summer since 2019. It was the right decision. I had a fantastic summer free of cancer treatment.

In September, I was stunned that my scan results showed the numerous small nodules in my lungs, almost certainly metastases of the cancer, had not grown at all since May. In fact, several of the largest nodules were smaller. This is not at all what I had expected. It was very surprising both to me and to my oncologist because I had done nothing since May to treat the cancer.

Because of this, the immunotherapy treatments that I was scheduled to begin this fall were canceled. I go back in mid-January for more scans. If the nodules continue to get smaller, then we just keep an eye on them every 3-4 months, and no treatment is needed. If they have grown and are larger, I may then begin the postponed immunotherapy.

I am cautiously optimistic that this is the beginning of a very, very good trend. I'm not cancer free, but things are going in a positive and hopeful direction right now.

I feel great. I'm running and active. I have no symptoms. And I turned 52 years old today! Maybe I'll be around longer than expected after all.

Cancer Isn't Done With Me Yet

I haven't written here in quite awhile. Enough people have been asking me how I am that I thought it would be helpful to give an update.

I had a CT and MRI in November and I met with both my oncologist and surgeon. The good news from that appointment was that I was (and still am) healing well from the surgery and there was no sign of recurrence where the tumor was removed. The unfortunate news is that the CT showed that the numerous very small nodules in my lungs had grown since the last CT in June.

I went to Seattle in early January to get a second opinion at the Fred Hutchinson Cancer Center. What the oncologist there said is that the nodules in my lungs are "highly suspicious" and "probable" metastases of the cancer that was removed from my pelvis. The only way to confirm that is with a biopsy, but they are too small for that. They are "indolent" (apparently the term they use) which means they are very slowly growing.

I had another CT in early February. It, too, showed that the nodules in my lungs continue to slowly grow in size. I have no symptoms at all from these nodules. Because I don't, and because they are still very small, at this point the plan is to continue monitoring them with scans every 3-4 months.

I was so hopeful that I would get an "all clear" at my November appointment. Unfortunately that didn't happen. This cancer isn't done with me yet.

And yet, I feel the best I have in a long time. I am back to running -- not as fast or as far -- but I can do it. Just today, for the first time since December 2021, I ran over 5 miles. It felt amazing. I am sleeping so much better without the sciatic nerve pain caused by the tumor. I am in the best shape I have been in a long time.

But I still have cancer. It's so strange to feel as good as I do knowing that the cancer is slowly growing in my body. 

This all means that my short term prognosis is good. Unless something changes, I have years in front of me. But it also means that my long term prognosis is much cloudier. Unless something changes, I probably don't have decades. Apparently, my type of cancer is "elite," meaning very rare, which also means that there aren't as many treatment options as there are for more common cancers.

I don't intend to pursue any clinical trials or experimental therapies right now. I feel too good to mess it all up with side effects from treatment. But when the cancer progresses to the point that I have symptoms, I'll hope that there are clinical trials that may have a therapeutic benefit for me.

What else to say? Of course I am wondering what's going to happen to me. I'm thinking about different scenarios and trying to be clear in my own heart and mind about what I do and don't want if/when I get sicker.

Lately, one (of many) prayers on my lips has been, "God, I'm grateful to be alive today."

One Year Ago -- The First Domino

A year ago today, October 12, the first domino tipped over and triggered all the cancer treatment that I've experienced over the last year. 

A year ago today, I went in for a CT scan to try to find a reason for the persistent and problematic sciatic pain I had in my right leg for several years. There was something there -- I could feel the lump/mass in my upper right hip area. The CT itself was uneventful, but later that same day my doctor's office called and said that I needed to go to the ER immediately because the scan showed an incidental finding of acute appendicitis. I was skeptical and pretty sure I didn't have appendicitis, but I went to the ER anyway. I spent 5 hours there and, in the end, was scheduled for an appendectomy two days later as well as a biopsy of the mass in my upper gluteal area. Turns out, I was right. I didn't have appendicitis. I had a tumor in my appendix in addition to the much larger tumor in my...to put it crudely...butt.

Three days before my 50th birthday, I had the appendectomy and the biopsy. Two weeks after that, the pathology came back -- cancer, soft tissue sarcoma, sclerosing epithelioid fibrosarcoma.

After that, the dominos kept falling...tests, scans, doctors, procedures, chemotherapy, hospitalizations, transfusions, radiation, surgery, physical therapy.

I am so much better than I was a year ago. The cancer has been poisoned and zapped and surgically removed. I can walk without a limp. The sciatic pain is gone. I am even able to jog short distances which feels incredible. The physical therapy has been a huge help. My core is getting stronger and the muscles in my hip and pelvis are slowly healing and getting stronger, too.

In short, I am feeling the best I have in about a year, and I am incredibly grateful. I look back on it and marvel at it all. I know I could not have come through it without the help and expertise and support and encouragement of many, many people -- most of all my amazing wife, Allison.

Next round of scans and appointments is November 2. Here's hoping that the scans come back clear.

I don't know why exactly, but it felt important to mark this anniversary, because it's when my life took a turn and everything changed. Changed for the better or for the worse? I'm going with..."Yes."