As Advertised

“When you come to a fork in the road take it.” —Yogi Berra

So, we seem to have arrived. At the next fork in my road. Let me explain.

Most of you know I’ve been living with cancer for the better part of the past two decades, and have reached the point it’s going to take me out sooner, not later. That, in part was the impetus for launching this blog.

Not meant to be a long, heart-tugging, “this is my journey through cancer until the end” project. That’s been done. By better reporters than I. More than once. No, this exists as my shot at downloading whatever experience and wisdom I may have gleaned through the life I have been privileged to enjoy. A life, in my modest estimation, that has been more scenic than many folks get a shot at.

But to the point of this update. This is a bit of a medical bulletin, because the ground has shifted. First, some context for those who need it. This will all be old news to many readers. If you’d like, you can skip past these paragraphs of back story and jump to the news of the day here.

If you have been following along in your books, you’ll perhaps recall that back in the summer of ’17 I got the news that the prostate cancer I’ve been living with for damned near 20 years was on the move again, and I was being graduated to the Big Boys Table.

Due to the doubling rate of my PSA numbers (tech talk for the blood work that gives the medicos a clue about the level of activity and aggression of prostate cancer cell mutations in the male body), Kaiser health care removed me from the care of the urologist who’d been administering my care the past several years since the cancer woke up again. classified me as Stage Four, and assigned me to an oncologist.

She ordered a series of full body scans to get a sense of where we were at, and in our initial meeting, laid out my “new normal.”

In July or August of last year:

  • There was no evidence of cancer developing at “remote sites.” In other words, we couldn’t see any spread of the disease yet.
  • She adjusted my medication profile, adding a second hormone suppressant drug (seems that hormones, especially testosterone, are freakin’ Happy Meals for prostate cancer cells) which, she explained, “works well for some folks, and not at all for others.”
  • The bad news (other than some nagging, but not quality of life destroying side effects) was that, if it did prove effective for me it would eventually stop working.
  • She also explained that, though each case is unique, she would expect metastasis in 12 to 18 months. [Note: Some time later, as I appeared to be responding well to my new med, she recast that projection to 18 to 24 months.]
  • Once the cancer cells—clever little fellows that they are—mutated themselves enough to overcome the lack of hormones in my body and began rapidly replicating, the most likely avenues for their spread would be into my bones or lymph system. Sometimes other internal organs become involved (the most difficult treatment challenge), but the first two are more common.
  • When the cancer begins to present deeper into my body, there would be further escalation of treatment options to discuss, with the caveat that all those would be about buying some time. We aren’t looking at “curing” anything here.

OK. For any who needed ’em, those are the nuts and bolts of context here.

If you follow me on Facebook, you’re likely aware I spent most of last Friday in the tender hands of a succession of Kaiser Permanente techs in San Jose for nose to toes CT and bone scans.

I wasn’t terribly concerned. Best I can tell, my overall physical condition hasn’t changed radically recently. Oh, I’m tired a lot, but that’s a listed side effect of one of my meds, and besides I’m old.

Chronic aches and pains all over the place, but see above.

And, based on the performance of my PSA numbers, this seemed to be more of a “routine check to be sure we’re not missing anything” than an “uh-oh, we better take a closer look at see what the hell this is about” test order.

Right. Quit noodling and dive in, Ace.
Finally got the update phone call from Dr. Jhatakia last night. As she put it, “it isn’t great news, but it’s not drastic news either.” Which, in today’s world, is a pretty good day.

The deal is this:
The scans are showing a “small lesion” (about 0.8 cm) on my left pelvic bone. It’s new. Wasn’t there in the last scans. Which would seem to indicate the cancer has established a toehold in my bones (bad news) but is not very far advanced yet (good news). Other than that, no indication of other weirdness. Lymph system, internal organs, and the rest of my skeletal structure show no signs of being compromised at this point (yay!).

Thus, pretty much right on schedule, we have the first indications of metastasis.
We have some different treatment approaches to consider now and, given the early days of the spread, the luxury of taking a little time to make our decisions.

We can stick with the current course of treatment; with the periodic Lupron injections and daily oral dose of bicalutamide (Casodex®). As the doc finished outlining the scan results I, jumping ahead as I am wont to do sometimes, tossed this one out with a casual “so, we hold course and watch and wait?”
Her response was a less-than-enthusiastic “weeeell, we could do that, and take another set of scans in four months to see where we are.”

She also tossed two additional options on the table. Each has its own positives and negatives. Both involve continuing the Lupron injections, and replacing the bicalutamide daily oral does with another, related, therapy. I’ve got some research to do, but here’s a rough recap of what the oncologist told me.

The first option is enzalutamide (Xtandi®).  Side effects on this guy are similar to the ones I’ve been dealing with from the bicalutamide (fatigue, bone and muscle aches, fluid retention) with a couple of unpleasant “added attractions.” Apparently it can cause some cognitive impairment (oh, swell!) so it’s recommended that it be taken at bedtime—because, I guess, who needs cognition when they’re sleeping?
Oh. Almost forgot. In about one percent of patients, the drug can spark seizures. Obviously, an outcome I’d like to avoid.
The other unpleasant side effect from this guy is cost. Apparently, even on Medicare we’re looking at several grand a year. Gulp.
She did indicate our income may be low enough for us to qualify for something called Medical Financial Assistance. I’m unclear if this is a Kaiser-Permanente program, something sponsored by the drug company, or a government benefit of some sort. But if we can get it, boom! No copay. She’s going to have staff mail me some paperwork.

The other possibility she raises is a drug called abiraterone (Zytiga®), another second-line treatment for men who’s cancer has become resistant to androgen (hormone) therapy. But (of course—aren’t there always?) there are “issues” here as well.
Perhaps most important, in my case, is that it needs to be administered in tandem with prednisone, a steroid with its own unhappy symphony of side effects. Probably most significant for me would be weakening of the bones (increasing risk of fractures) and the fact it often plays havoc with blood sugar—not a good thing for diabetics.

So, dem is Da Fax, Ma’am. As you can see, there are going to be some high stakes decisions to make over the next few weeks. It’s worth noting, I suppose, that all paths ahead ultimately lead to the destination. And it appears I have still have a bit more of a hike before I arrive there.

But this most surely was the next significant milestone on the journey. We knew this next turn was coming up, and here it is.
I, of course, “have some feels” about the news of my new normal, in addition to some decisions to make. I won’t be digging into them here because (a) that deserves an essay all its own and (b) frankly, I’m not sure what they are yet.

Think of me today as that little beach ball that spins round and round on your screen when you’re machine is trying to load something or open an complex file.

Forward!

7 thoughts on “As Advertised”

  1. My dear friend, yes, the march goes on. I am too old and have traveled too many miles on gravel roads to put on the mask of denial and reassurance for you. As you and I have discussed, we have been privileged to take bigger bites of the pie than we were probably entitled to, not due to any virtue but a result of time and place. Our redemption is that we are so grateful for that luck. Grateful for it all. After reading your latest installment, I amazed by and grateful for your absolute authenticity. Acey, you are a treasure in my life and I love you.

  2. Thank you for the update, Ace. I am glad to know what is going on. I know you are busy with all of this medical stuff; and I still hope we can see each other after the first of the year. I love you, my friend. Reb

  3. Thank you for letting me walk by your side and listen to your words of love, of life and wisdom. Thank you for being you, and for sharing your thoughts. You are a star who lights up night sky and makes it possible to navigate through darkness.
    I hope the option you decide on for the next stage of the jorney will be successful, will hold many benefits and keep the bad effects as little as possible.
    You are indeed a treasure in my life, too. Know you are loved.

  4. I’m glad you’re able to write and process and share your journey. It’s full of compexities, these medical ins and outs but in the end it’s your life, your humanity and yes your fear of this “new normal”. My heart goes out to you, A.C. Keep writing.

  5. Ace, my friend, thank you for keeping us apprised of your life and how you are approaching your decision making. You and Yoshimi are always in my thoughts and prayers.
    Love you,
    Claire

  6. Thank you for this update. I so appreciate your honest, authentic, telling of your journey. I continue to surround you in love and light~

Leave a Reply

Your email address will not be published. Required fields are marked *