Deciding to enter hospice care is not an easy decision. As a matter of fact, it feels kind of like the final lap of a long race.
But, if you read my last blog, (which you can check out here), you know what I’ve gone through of the past few weeks. The bladder bleeding and the clots, the broken leg in the hospital, and now the subsequent rehab, all of these incidents made a look at my long term future and where to go from here inevitable.
My latest treatments with the drug Pluvicto has yielded disappointing results. My PSA has dropped a little, but not the big drops that my care team was looking for. The tumors were also largely unchanged. Small shrinkage, but once again not the dramatic changes we were looking for.
Pluvicto also brought along with it a pretty significant amount of pain. Walking around my house with a towel stuffed in my mouth to muffle my screams was certainly not ideal, and I was taking a lot of meds to try to keep the pain under control. Those pain meds probably led to my bladder bleeds, which put me in the hospital.
On that horrible Black Friday, my wife Holly was in contact with my Pluvicto team, and when she described what was going with me, they were not surprised that my leg broke where it did. I had a cancerous tumor in my femur, and my leg broke right where that tumor was located.
But the main thing they talked about was where to go from here with my treatments. Because of the nature of my injuries, any more Pluvicto treatments would be delayed until January at the earliest, and how effective any more treatments would be was unclear. Clearly, Pluvicto was not the wonder drug for me that it was for other people, and my doc was pretty upfront that there wasn’t much more they could do for me.
So, on the Saturday after that Black Friday, and after watching Michigan destroy Ohio State with friends and family in a crowded, too warm hospital room, it was time for some real talk. Holly looked at me, and I knew it was time to talk about the hard stuff, and the look in her eyes and the love that I felt was pretty overwhelming.
She told me about the conversations she had with my care team, and how the treatments weren’t doing what they wanted them to do. She also let me know that the options available were not great, especially with a further delay.
While we were talking, the slow realization that this long road of treatments were coming to an end, and further trips down this road was probably just going to cause more pain with little progress, and that this 12 year mission to rid my body of this disease was coming to a close.
That’s when it got emotional. Thats when it felt like I was giving up.
As the tears washed over me, I felt every one of the 12 years. The prostatectomy that removed the diseased organ. The 38 radiation treatments to my prostate bed. The frustration of my PSA rising again and starting me down the road of ADT treatments that completely changed my personality and shut down my sex life with Holly.
After then came Xtandi, and then came two different rounds of chemo, and three rounds of clinical trials, and then finally Pluvicto. And all that was coming to an end.
But we also talked about the immediate future, and how I didn’t want to just go home from the hospital and die, that I had a leg to rehab. I wanted to still be a functioning, present member of society and my family. I am looking forward to being a grandpa, and I want to live that as long as possible.
So, bottom line, here’s where we are. I am no longer going to get cancer treatments. Any treatments moving forward will be to continue to improve my leg, and also treat my pain from any cancer related maladies such as tumors. My hospice doc and nurse are wonderful persons, concerned about making my life as pain free as possible. My life after my latest hospital stay is improving.
I am extremely blessed. I have many friends and family who love me unconditionally, and through all the trials and tribulations they’ve been here for me every step of the way. One such friend visited me at the hospital when I was probably at my lowest, and right after we made the decision to stop treatment.
His advice to me? Don’t stop living. Stopping treatment is not giving up. Live everyday. And I’ve decided to take that advice.
So while I go through the next phase of this journey, I’m going to continue to live, whatever that means. I’m going to continue to write, and let people know exactly how this process is going to work for me. Hopefully there will be some humor along the way. I consider myself lucky to be able to look back on my life through the eyes of a long time survivor, and because of that I have a unique perspective on how that looks.
I want to be here for my fellow cancer survivors, to answer questions when I can, or just sit and listen when the frustrations of ineffective treatments or recurrences can bubble up and smack you down to the point of giving up. I get it. I’ve been there.
I’m also probably going to talk about God, and how the assurances of being a Christian gives me a calmness as I look to the future. I feel like God is using me to spread His message. A message of love, and forgiveness and an overall calmness that comes from being a believer.
Hospice is a pretty scary word. To a lot of people, it sounds like the end. It sounds like giving up. But to me, it sounds like freedom. Freedom from the pain and agony of continuing treatments, and also the freedom to continue to live my life to the fullest, whatever that means to me, my family, and my Savior.
I’m not sure which way this journey takes me. But I’m here for it. And hopefully, dear readers, you’ll come along for the ride.
Thanks for reading.