Hope and Frustration

Stage 4 cancer is not for the meek. The fight not only consists of getting through treatments that effect your quality of life, but it also wreaks havoc on your mental state. To get up everyday knowing that you are going to feel terrible, or at best feel sort of okay, is hard to get used to.

There have been plenty of days over the past year when I just wanted to lay in bed all day, pull the covers over my head and forget about the world.

Unfortunately, that scenario is pretty much impossible. Living life demands that I be present enough to live it. As much as I would like to retreat from this world, things need to be done, even if I don’t feel up to it.

I’ve had to make some adjustments. Mowing the lawn has become a multi-day task now. I’ll run a vacuum when I feel up to it, and that is sometimes woefully ineffective. Holly is working two jobs, so I try to help out when I can.

But to me, the most difficult and frustrating aspect of being a stage 4 cancer patient is trying to deal with all the ups and downs of treatments. A treatment at first can be effective and almost life changing, and then, as many advanced prostate cancer survivors know, the treatments slowly become less effective, until a rising PSA and growing tumors bring the process to a close.

Even when a treatment is effective, the side effects can be pretty bad. I managed to avoid the ICU for the first 57 years of my life, but have spent 4 days ensconced there, twice in the last 3 years. Once, for COVID during chemo, and once more for a bleeding esophageal ulcer while on a clinical trial drug. The latter occasion had me receive 4 units of blood to save my life.

The entire body’s blood supply has only 10 total units, so yeah, I lost 40% of my blood.

And then there’s the bills. My latest excursion into the hospital cost around $28,000, of which my insurance covered $21,000. My clinical trial doc has told me that the drug company will pay for that bill, but so far, no luck on that front. As we wait for them to pay, Spectrum Health has turned that bill over to a collection agency, so I get to deal with those phone calls and a hit on our credit rating. Good times.

My latest treatment with the drug Pluvicto has been held up by a quality control issue in the lab. Apparently that has been solved, but another issue has come up regarding the PET scan that I had to see if my cancer was right for the drug.

I’m not going to get too technical, but basically there are two different markers they use for the PET scan, and only one is considered by insurance to be the right one. I got the wrong one. The wrong one is used more than the right one in Michigan, and my Pluvicto doc is hoping the insurance companies catch up soon.

It might be 2 months before I start my treatment. Meanwhile, my PSA has soared over 100, I have daily tumor pain, and the alternative to waiting for Pluvicto is either another clinical trial or another round of chemo.

Needless to say, I’m not thrilled with either of those choices. I’m not a fan of the ICU.

So, you’re probably asking me right now, “Hey Dan, this blog is titled Hope and Frustration and it’s been mostly frustration. Where’s the hope?”

Well, I could say that my hope lies in the name of my Lord Jesus Christ, but that rings hollow to me these days. I feel like David in Psalm 22, shaking my fist at the heavens and shouting, “My God, my God, why have you forsaken me?” I am a Christ follower, but I feel myself drifting away from Him.

I know I have a lot to be thankful for, like my family and friends. We just found out last week that we are going to be grandparents of a grandson, and I am rejoicing with that news.

I also know that a lot of cancer warriors are no longer with us, and I’m blessed to be alive at this point with all I’ve been through. My hope is to keep fighting knowing others have courageously fought for every second of life they could grab.

But the last few months have been really hard, harder than anything I’ve previously encountered. My will to live has taken some tremendous hits, to the point where I’m asking myself if this is all worth it. I’m holding on to a hope for a cure with the Pluvicto, but that hold is tenuous, like clinging to a rock face of a mountain and it’s starting to snow.

I know this blog isn’t very cheery. But writing this helps me, and knowing that people will read this and pray for me gives me comfort.

In the latter verses of Psalm 22, David rejoices in the Lord, because he knows the Lord hears his prayers.

“For he has not despised or scorned
the suffering of the afflicted one;
he has not hidden his face from him
but has listened to his cry for help.”-Psalm 22:24.

Sometimes, just knowing someone is listening is enough.

I always end my blogs the same way, but I want you to know I truly mean it when I say…

Thanks for reading.

Peace