I was apprehensive before my appointment with my oncologist today. My PSA number has risen a bit, from .06 to .35, and I wanted to know what he thought it meant, of course. It turned out that my guesses yesterday were correct. He wants to wait and see.
He called today’s PSA score “one data point.” He needs another to recommend a course of action. But at the same time, he knows it’s up to me. If I didn’t want to wait, we’d go ahead with more scans now. But I can wait.
As usual, I “checked in” on Facebook when I sat down in the waiting room. As usual, the amount of support I received made me feel very loved. And as usual, the staff at Cypress Hematology and Oncology here in Denver, Colorado got me in without much of a wait.
Someone recently asked on Facebook what the best cancer care place in the Denver area is, and while I couldn’t answer which is considered “the best,” I answered that there’s no place else I’d rather go, and no other people I’d rather have treat me than these people. That feeling was reinforced in a big way with this visit.
Much as I thought, my doctor wants to see if my PSA will go back down of its own accord. I still have my prostate gland, and it’s still producing PSA. So it’s possible that’s all it is. But neither he nor I feel that’s likely. He thinks the number will probably go up again by this time next month. I do too.
He was very frustrated that I didn’t get more time from Xtandi. But we’re trying not to make that assumption yet. We’ll just sit in the waiting room for another month to know for sure. I’ll keep taking my pills every day in the meantime.
I told him about my sore shoulder. He poked at it, and asked what hurt. He asked when the pain started, and other questions. From my answers, he surmised that it’s probably an injury or some rotator cuff issue that happened when I began working out – at their behest, by the way – a couple of months ago. I know that’s when I noticed the pain for sure, when I started working out. Shoulder presses in particular hurt, and I was only lifting the bar with no weights. He gave me some simple steps to follow to try to rehab the shoulder as best I can for the next month.
At the same time, he assured me that he realizes that because of the history I have with this shoulder, and how my original diagnosis was thought to have found cancer there, that we need to pay attention to that possibility. So if, when I go back in June, my shoulder is no better, and my PSA rises further, he will order scans to see what can be found, both in my left shoulder area and everywhere.
He knows my priorities and criteria when it comes to treatment. He knows that there aren’t many more conventional treatments that I will agree to, if any. So this is a significant milestone. If my next number is higher, as both of us expect it will be, we will be making some very difficult choices.
Before he ran off to his next patient – these doctors and medical staffs are stretched far too thin – I asked him to sit for a minute so I could tell him how much I appreciate him and his staff. It was another one of those “sit still while I tell you how much I love you” moments, which seem to happen for me fairly regularly. I didn’t use the L word with him, but I made sure he realized how blessed I feel to have such people caring for me.
Then, my favorite nurse, the famous Melanie came in. I had two shots to get today. We went back to the four month version of the Lupron shot, thank goodness. So hopefully my appetite won’t go haywire this time. But my hip is sore, and it will be for about a day until the medicine spreads throughout my system. I also got my monthly Xgeva shot for my bones. That one’s easy. Just a shot in the arm. But I didn’t feel either one, since Melanie is the best shot giver in the observable universe.
After the shots, I also wanted to have a serious conversation with Melanie. Both she and the doctor had attempted to minimize the size of my PSA increase, until I reminded them that in terms of the rate of increase, it’s a lot. A factor of almost six. They both sadly acknowledged that was true. Their job is to try to encourage me, but they were both honest with me when I pressed them. That’s just one reason I love my team so much.
Melanie is a chemo nurse. My oncologist knows that I have no intention of doing chemo. I could write a whole blog post as to why that is, and maybe I should. But the bottom line is, I don’t believe it will give me much more time. I think it will only make the time I have left miserable. It will definitely not cure me.
I’ve grown attached to Melanie over the past several months, and I wanted her input on the subject. I knew that it would come up soon anyway. I specifically asked if she’d treated guys in my specific condition. She admitted that they don’t get a lot of prostate cancer patients there. Most guys with prostate cancer see a urologist. I think that’s a mistake, but that’s for another post too. I wanted to know if she had treated any Stage 4, Gleason 9 prostate cancer patients with chemo, and if so, what were their results? She said she’ll do some research and tell me the next time I see her.
But I’ll tell you one thing. Nobody is saying that chemo will kill my cancer, or even give me more than a few months.
I was a little afraid that Melanie would pressure me to do chemo, but she didn’t. She totally understands, and shares my views on the subject. She sees it every day, up close.
I find myself marveling at these people who care for cancer patients for a living. They develop attachments to their patients, and then, in many cases, lose them. They treat terminally ill people every day, and keep a smile on their face and a kind word on their lips. I don’t know how they do it.
I won’t reveal the rest of my conversation with Melanie. It was between her and me. But I’ll tell you this. It made me very happy to realize that Melanie will be my nurse for the rest of my life. She will be there, right till the very end. It’s a gift she has, to be a caregiver to the dying. I’m welling up right now with gratitude that God brought her into my life. And all because I was scared of a shot and demanded their best shot giver! That was about a year ago now. Today, she’s one of the most precious people in my world.
So I’m in the waiting room for another month. But it will go fast. I have lots to do between now and then, including wrap up my last recording project and take a road trip to Arizona for a dear friend and cancer brother’s benefit.
Both my doctor and my nurse hated my results and their implication. I know you do too, especially when things seemed so hopeful not so long ago. But I always knew this day was coming. The day when the combination of Lupron and Xtandi would no longer control my cancer. The day when I would look at the remaining conventional treatments available to me and say, “No thanks” to all of them. I just didn’t think it would be this soon.
There is still the cannabis oil treatment I’ve been on. I’d like to move back to a full dose, rather than the “maintenance” level I’m taking now, just to see if it will help. But I’m not willing to jump through a lot of hoops to try to stay alive. No major changes to an already healthy diet. No magic supplements. No cleanses. No essential oils. No alkaline water. I just don’t believe in that stuff. I’m sorry. I’ll talk about all of this much more in future posts, as I already have in past ones.
I feel that my job is to trust God, and bear witness. That’s another blog post right there, and maybe the title of my book. Bearing Witness. Fighting for a few more months is not my style. Telling my story is. I have a lot more to say. I just have one more month in the waiting room before I can say all of it. #waroncancer