UPDATE: May 9, 2023
Hello friends and family,
I’m supposing many of you are wondering how treatment went on our return trip to the Mayo Clinic. Surprisingly (or not), “not as expected.” I wanted to bring you up to date.
We flew out of Portland early Saturday morning, March 18. Because of our late reservations, we found ourselves sitting apart from each other, in very narrow middle seats. The guy next to me filled both his seat, my arm rest, and about a third of my space. No one was comfortable. The flight was exhausting. I was so glad when we landed.
When we arrived at the Minneapolis airport, the snow was blowing sideways. We boarded our commuter bus that took us to Rochester.
Sunday was a recovery day.
On Monday I began radiation treatment. The routine was 5 days a week, for the next 4 weeks. My appointments took place between 8:00 am and 11:00 pm. Each day at my appointed time, I drank a bottle of water, was led to a treatment room, and laid down on “the couch,” a euphemism for the treatment table. Three technicians adjusted my posture lining me up using my newly acquired tattoos I was given to ensure the proton beam would hit the correct target- my prostate gland. Once the technicians left the room to start radiating, my only job was to lay very, very still, and not move so that the beam did not hit the surrounding healthy tissue. When the beam was radiating, I took very shallow breaths to minimize movement. This was probably going to an extreme, but I was nervous and didn’t want to mess things up.
After the first two weeks I started to experience the side effects that come with treatment – dysuria and gastro-disfunction. The symptoms peaked by the end of the third week. By the beginning of the fourth week the symptoms were decreasing. I was feeling pretty good actually. The weather had warmed up, the snow had melted, so I went disc golfing.
I felt “in charge,” and that somehow, I had gamed the system. Except for the small pimple Jenny noticed on my forehead when I got home after my disc golf game. A bug bite, I thought. Then Jenny discovered a few more forming on the back of my head. All were starting to swell and grow in size. Soon they began showing up everywhere- arms, legs, stomach, chest, back, and face. I began to experience body aches, a fever, and over-the- top nausea. This morphed into what felt like being sunburned everywhere, with the sores bursting randomly like tiny flares sending what felt like needles descending just below the skin surface.
The advice nurse suggested strongly that we go to the hospital ER. We left immediately and after a 6 hour wait, I was seen. Labs were inconclusive. The doctor was puzzled and sent me home.
The next day my radiation oncologist contacted us and said she suspected shingles. My radiation session was moved to the last appointment of the evening to avoid exposing others if her gut level diagnosis proved correct. After some failed attempts to secure an actual diagnosis by local service providers, I was back at the hospital ER the next evening where the doctor lanced a couple of lesions to get tissue and blood samples.
The biopsy came back positive for disseminated shingles- a rare version of regular shingles. I completed my final radiation treatment as scheduled on Friday night and then was admitted into the hospital the next day to receive IV’s that delivered acyclovir direct to the blood stream. Great doctors helped me work through this. They carefully monitored my kidney function which was at risk due to the high and frequent treatment doses. Two infectious disease experts were brought in to help evaluate my case.
Ironically, I was treated in the stem cell transplant floor of the hospital, completely isolated due to the infectious nature of what I had. After four days of treatment I was released, safe to be in public.
Finally, after a third re-schedule of our return flight, we boarded a plane and returned home April 21.
So, what’s next? There is concern over the condition of my heart. It is unclear whether my current state of heart failure is due to amyloid deposits or something else. The imaging shows scar tissue, suggestive of a heart attack. I feel very fortunate to have survived a “heart event” as, many times the symptoms of a heart attack is not chest pain, pain going up and down arms, cold sweat, nausea. It’s death, about a third of the time. I am alive.
The Mayo doctors would like me to return for more tests soon to help clarify, if possible, what’s going on. The OHSU doctors here in Portland think differently and are suggesting a different plan of action and treatment. Honestly, I’m undecided if I will go forward or not with additional testing and treatment. With amyloidosis, my treatment options are limited. It comes down to a risk vs benefit decision. I’m not sure the benefits outweigh the risks of additional invasive procedures. So, this would be something you could pray for me about as I consider my options.
In the meantime, I’m back to work, enjoying some disc golfing, and time with my children and grand kiddos. A week ago Keller and I went to see the 40th anniversary of The Return of the Jedi at the theater. Scarlett came over for an afternoon visit a couple days ago and she and I practiced bike riding without training wheels. The first hot spell of the season is going to be here in the next few days- just in time for Mother’s Day. After Rochester weather, I can’t wait!
Thank you all for being part of this crazy, unpredictable journey I’m on.
Curt
Original post from 3/14/13:
Thank you all for sharing your prayers, notes of encouragement and funny memories. Once Natalie had received what you had written, she and Jenny began to compile your writings, placing them in a book. I never guessed what they were doing, except they were spending quite a bit of time on it. I thought it was a project for the school Kelly and Scarlett attend.
At a family dinner the day before we left for Mayo, I was presented with the collection of what you sent. We all took turns reading your heartfelt words out loud. I felt as if you were here with us, speaking directly to me. Tears and laughter flowed together. Your words brought me comfort and hope.
Jenny and I flew to Rochester on Sunday. Once there, our schedule flowed non-stop. Jenny always with me, helped navigate the 15 appointments I had. How could I have done this without her? I was probed poked and cut, head to toe. My left arm where the IV’s and blood draws took place held up well. The results of the labs, tests, scans, procedures, and doctor visits led to a multi-disciplinary team plan of action.
Here’s some of what we found out and the treatment plan I’ll be following:
- The PSMA PET SCAN in particular revealed that my cancer had not metastasized. It’s confined to my prostate. That was great news.
- Surgery, however, is not a treatment option for me. The 3 heart scans I had confirmed that I am in a state of heart failure. This is not new news, just really disappointing news as I had hoped my heart might be healing some. I will be going through additional testing when we return to Mayo to further evaluate my heart’s condition and what I can expect in the future.
- I will be moving forward with proton radiation therapy. My radiation oncologist, based on recent clinical treatment trials completed overseas, has scheduled me for 20 rather than 26 proton sessions. The efficacy of a 20-session treatment plan is virtually identical to a 26-session plan. The radiation is just cranked up a little higher. I’m glad for the shorter course.
- No ADT in addition to radiation for me due to my osteoporosis and heart issues. I’m alright with that.
As some of you know, Mayo Clinic was started by Catholic nuns and the Mayo brothers, both doctors. Begun as a work of faith and love, it grew to become the #1 hospital in the world. It has attracted some of the best doctors in the world who work well together and are expert in treating complex cases like mine.
I am blessed and couldn’t be in better hands.
About the Charlie Brown cartoon above. Made me laugh hard when I saw it this last week. Reminds me of a St. Benedict story I read. 3:00 pm each day is the liturgical prayer hour of none which corresponds to the hour Christ died. At this time Benedict would send a fellow monk around to remind the other monks at work that they are mortal, that someday they will die. I can imagine they got tired of hearing this, but I guess Benedict thought they needed to hear it day after day.
Snoopy’s response in the cartoon: so blunt, simple, true, and profound, really. I think for me, holding both perspectives helps me to live and enjoy the days and years I have left as fully as possible with those that I love. Still, I don’t like thinking about my mortality, or admitting it even though I do every day. I like telling myself that life is what I do today and every day. Death is far off and is no immediate concern. Especially easy to tell myself this when I’m feeling good physically.
My accountant brought my life back into balance when she said something funny to me, not long after I went through chemo and the transplant three years ago. In a very British accent (she’s from the UK) articulating her words carefully, she said to me, “Curt, you had a brush with the grim reaper, and he left you alone. But you know, he will be back some day.” Really dark humor. Of course, she’s right. I just want to push that day out as far as I can.
My love to all of you. Thank you for your prayers and being part of this journey with me and Jenny.
Curt