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."

Surgery Update III, What's Next

I had appointments with my oncologist and surgeon on Wednesday afternoon.

The good news is that my doctors are not recommending any further treatment at this time. My next scheduled appointments are in November, which will include another MRI and CT scan.

The pathology report came back and, as expected, the surgeon could not get negative margins in three places...but that was expected and the reason for the radiation treatment prior to surgery. There is always a chance of recurrence (somewhere in the 20-50% range) but she is cautiously optimistic that all the treatment I've done will (hopefully) mean that the tumor will not come back.

I had the drain tube removed on Wednesday, and that will slowly heal up over the next few days. The surgeon says my incision looks great. If I get through the next two weeks without developing an infection, then I should be in good shape. I have physical therapy appointments set up for August.

I still have the port in my chest. I'll go in every 8-12 weeks to get it flushed. But at some point it'll come out, too. Probably not until the end of the year or early next year.

The surgical site in my hip and gluteal area has been a bit more swollen, tender, and tight since the drain tube was removed. I'm hoping that will resolve over the next week or so. I continue to walk without a cane, but do have a slight limp. I took a "real" shower for the first time today since the surgery. That felt great!

Over the last nine months, the cancer was poisoned with chemotherapy, zapped with radiation, and then the tumor was cut out of my body. Here's hoping that's it!

Finally, Allison and I have a week on Maui booked for mid-November. It's been so hard to schedule any vacation time due to all the treatments, etc. We're really looking forward to getting away!

I'm not sure when I will post to this blog again. With the most intense days of treatment coming to an end (hopefully forever) I may not have much to share.

But if I do, I'll be sure to post it here.

THANK YOU to all of you who sent caring cards, left encouraging comments, sent supportive text messages, and showed me so much love over the last 9 months. One of the gifts of this unwanted diagnosis has been to experience God's grace through all of YOU. Thank you!