Thursday, June 29, 2017

The Path Forward


My consultation with my oncologist didn't go quite as expected, in both good ways and bad. I thought it would go something like this:

Doc: Well, Mark, your bone scan lit up like a Christmas tree, so we have to do chemo now.
Me: Sorry, Doc, I'm not gonna do that. Got anything else?
Doc: Well, there's that Radium stuff that makes your pee glow in the dark, and a clinical trial that could help your cancer or make you grow two heads, but that's about it.
Me: I appreciate all you've done, Doc, but I think I'll call it a day.

Or something like that. I don't mean to copy Dan Cole's writing style. Much. Here's what really happened.

The bone scan didn't exactly light up like a Christmas tree, but it is significantly brighter than the last one. Here it is, in all of its glory.


The one on the left is the one from last September. The one on the right is from three days ago. There is a visible difference. But according to the radiologist's report, the bone scan didn't reveal any new mets. It's that the existing ones have grown and "intensified." Whatever that means.

It was the CT scan that showed new metastasis where none had been found before, on the interior of my pelvis and sacrum. It's a 3D image, so I can't post it. But my oncologist scrolled through it with me and showed me all of the spots. They're there, all right, and they look pretty prominent to me.

Here's the good news. I still can't feel any of them. The only pain I have is from a place where no cancer was found, my left upper arm bone. That means I can get a steroid shot to try to fix it. I have to go to my Primary Care doctor for that, though, or get a referral from him to a place that does that. Maybe a sports medicine doctor or something. So that's really good news. Unfortunately, Melanie doesn't have those in her arsenal.

Speaking of Melanie, I happened to see her while I was there. I told her that my last Xgeva shot hurt for a week and a half. She asked who did it, and I said "the one with the European accent." She and the MA who were in the room both laughed and said no wonder. The MA said "she's the mean one." Good to know. I won't be getting any more shots from her.

My oncologist wants me to do chemo. He thinks it would be most effective, being an aggressive treatment for an aggressive cancer. There's also the radium IV treatment, Xofigo, but he feels it might be dangerous to try that before chemo. He said it would do something to my blood cell count, I don't remember what. It would compromise my ability to tolerate chemo. He thinks chemo should be first, then maybe we can try Xofigo if needed.

This scenario did not thrill me, as you can well imagine. I asked him, given my history with treatment, how fast I burned through Lupron and Xtandi, would I be likely to have long lasting results with Taxotere, the chemo drug he wants to start me on? He admitted that, while I could get good results from chemo, I might not have them for very long. And in the meantime, I'd feel like crap, and look like Chemo Man. Gaunt Cancer Guy would be in the house.

I told him that, in the past year, three guys I know personally underwent chemo. Two of them died, and the other regrets it. He understood how a personal experience like that would weigh heavily on my thinking about this issue.

I told him there was no way I was doing either of those treatments until August at the earliest, if then. Not until after our 40th anniversary party and the kids' summer show the first weekend of August. At least. He said that was no problem. We're not in a big hurry. In the meantime, he'll set up a consultation for me at the local university hospital regarding clinical trials I might be a candidate for. I expect a call from them next week.

Also in the meantime, I told him about an alternative treatment I wanted to take another run at, since we have at least a month until I'm willing to consider what he has to offer. I explained how my PSA began to rise when I started ramping down my dosage of the cannabis oil suppositories I'd been taking. I told him I want to go back to full dose suppositories for a month, and then test again to see if it helps. He agreed that would be a good idea. There are no other variables, since I'm off Xtandi now, and no other factors would push my PSA down in the next 30 days. So that's what we're going to do. What a blessing to have an oncologist who would agree to do that so readily. He's curious when so many doctors are dismissive.

A good friend of mine was recently put on a hormone therapy drug, and wasn't give the option of Xtandi. He was simply put on Zytiga with prednisone because it was his oncologist's choice for him. I'm upset about this for my friend's sake, and at the same time, very thankful for my oncologist. He has never once pushed a treatment on me, or failed to give me all of the options he had available. He always explains each of my options with all of their pros and cons, and lets me decide. I told him today how much I appreciate that. It shocks me that all doctors don't behave that way.

So that's the plan for now. Full dose suppositories (what my friends Christopher and Lori call "butt rockets") for a month, then test my PSA again to see if it's helped. Consult with experts at University Hospital about clinical trials. If neither of those pan out, see if I can withstand my doctor's full court press for chemo. I think I can, though I've never been able to dribble a basketball.

As you know if you read my last post, I really wanted to title this post The Decision. It sounded dramatic. Instead, there are more things to try and more decisions to make. But realistically, this is the way things will go from now on. We may be able to push my PSA back down for a while with one treatment or another, but nothing will kill this beast. Each set of scans will be worse than the last, no matter what we do. Which, for me, makes the ultimate decision easy. It's just a matter of when to pull the trigger.

Don't worry, I'm not pulling it yet. But my hands are getting shaky, like Barney Fife once they allowed him to have a gun with a bullet in it.

I'm sorry if this news upsets you. I promise you that I'm doing fine right now. So is my wife. This was always the way this was going to go. I actually feel very blessed. To be at this stage, still with no symptoms is incredible. To me, it means that what I felt God showed me months ago is still true. He's giving me this time without pain to get some things done. Some last assignments. I've already crossed a few of those off the list. I only have two or three left that I know about right now. One is my book. Another I can't talk about publicly yet. The third is helping my wife prepare for a future without me.

This is why I feel like I can refuse treatments if it comes to that. If God has something for me to do, I believe he'll keep me here, and enable me to do it. Cancer can't stop that. When he's ready to take me home, I'm ready to go. Until then, I'll keep bearing witness to what this disease does, and how Love has made the difference for me. #waroncancer #bearingwitness

3 comments:

  1. Sorry to see your bone scan results weren't what you hoped for. Mine lit up a bit more than that and did so over a year ago. If you do the chemo, I've got a spare wig you can have if you like, a little bob cut number, that I got before chemo. Good luck with whatever road you choose to travel down, and watch out for the potholes.

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  2. Have you looked into a keto diet? High day, moderate protein and low carb. They say that cancer needs sugar to thrive. I don't know if this far in, if it would help, but might? Carbs turn to sugar in your body, which is why you eat low carb. And too much protein is converted to sugar too, for storage. High fat, like avocados, nuts, chicken thigh, eggs if you can have them. Just a thought. I'm sorry you're not seeing better results!

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    1. It's too late for diet to help. Prostate cancer feeds on testosterone, not sugar like other cancers. I can't cut carbs because I'm thin, and need to keep my weight up. My nutritionist says I need to combine carbs with fat to stay at my "fighting weight."

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