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Stayin' Alive

Ok, so I have a big day planned today with seven different appointments scheduled for everything from simple blood work, urinalysis, bone scan, PSMA PET scan, and a brain MRI at 10:15 pm this evening (and for my juvenile friends, yes, they will find a brain in there). 


As I tromp around the concrete jungle that is the Texas Medical Center (dozens of health systems comprising the largest employer within the state of Texas) with shorts, t-shirt, sneakers, trusty leather briefcase in hand, hairless chicken legs, bony, flat-as-a-pancake rear end, and mesh sleeve covering my dangling IV catheter, I am quite the picture of cool.  As I was switching buildings, I for some reason had the image of John Travolta strutting down a street in “Saturday Night Fever” pop into my head and it gave me a good laugh.

First, whether you like Barry Gibb’s falsetto or not (personally, it makes me want to want to tear my ears out), you must admit that the song is iconic and still as catchy as ever.  Even a non-dancer such as I, after consuming a plentiful amount of liquid courage, might find oneself tempted to get up and make a fool of oneself.  It’s not a layup like doing the “Electric Slide” at a wedding, but I don’t know how you stay seated when “Stayin’ Alive” is playing at high volume.

But it’s the lyrics that made me laugh when I thought about it this morning, a few of which are as follows:

Well, you can tell by the way I use my walk, I’m a woman’s man, no time to talk.

Thanks to the cancer-related compression fractures in my spine, I don’t really “walk” these days.  It’s more like a determined hobble, accompanied by a pronounced grimace.  I am hoping against hope that I will get some relief next week in the form of a “kyphoplasty,” a procedure where a special type of medical grade “cement” will be injected into my vertebrae, with the goal being to restore the vertebrae’s height and rebuild it, while also relieving the associated pain.  

I’m a woman’s man, eh?  Hardly.  First, I am fortunate enough to have the only woman I would ever want or will ever need.  Secondly, thanks to nine years of hormone therapy, my male equipment no longer works for anything other than the most basic of needs, so the women are safe there.  In fact, after nine years of testosterone deprivation, I am a woman in a man’s body, so I wouldn’t even know what to do with a woman even if I caught one these days.

“Feel the city breakin’ and everybody shakin’…”

The only people shaking these days when they see me coming are the claims processors for my insurance company, who have been billed for $330,841.19 (and for which they have already paid $97,686.81) since the beginning of this calendar year, a mere 105 days ago.  By the time I am done with a weeks’ worth of scans and procedures here at MD Anderson, I suspect that the top number will be well over $400,000, or roughly $4,000 a day in billed claims since the beginning of the year.

I know I have touched on this before, but there is both treatment toxicity and financial toxicity that comes with having cancer.  I am so fortunate – I have good health insurance and have rarely had a claim or request for pre-authorization denied (stay tuned on that though – there are some ominous developments on that front with respect to my next batch of treatments).  The thing is… I have no doubt that the number of claims that have been submitted to my insurance coverage are a lot higher than what they would otherwise be if I wasn’t invested in my own care, or easily took no for an answer.  Metastatic cancer requires constant vigilance and an aggressive approach to treatment.  I think of it in terms of doing everything I can possibly do to keep punching it in the head so it can’t move forward.  And yet, even with that aggressive approach, the last six months have proven that cancer will eventually find a way to break through.  I worry about patients that are not able to advocate for themselves, or do not have a person or organization that can help them do that.

“You know it’s alright, it’s okay, I’ll live to see another day.”

That’s really what this current visit to MD Anderson Cancer Center is all about.  In a little less than 11 years’ time, I have pretty much cycled through all forms of FDA-approved treatment for advanced prostate cancer, with moderate success.  There’s not really anything left from an FDA-approved standpoint.  The most recent “next big thing” in advanced prostate cancer treatment… PSMA-targeting treatments such as Pluvicto… yielded phenomenal results for me for a limited amount of time but once again… cancer figured out a new pathway, so it’s unlikely that I will be able to go on Pluvicto again.  

I’ve already done chemotherapy with limited success, I am now resistant to hormone therapy, and my body is pretty much a shooting gallery for targeted radiation.  But I must be careful with radiation these days, as it is now causing treatment-related complications and continued radiation could have a depressing effect on lymphocyte production, which could potentially limit the effectiveness of immunotherapy in the future.

But it’s alright, it’s okay, because there is always the next glimmer of hope and for me, it’s immunotherapy.  Until very recently, immunotherapy against prostate cancer was pretty much a dismal failure that offered little hope to advanced prostate cancer patients, but things are changing rapidly.  The clinical trial that I hope to be entering soon is for what’s known as a “bispecific antibody conjugate” treatment.  Simply put, bispecific antibodies work by connecting a cancer cell to an immune system cell, disrupting cancer’s signaling pathways and allowing the immune system’s T cells to destroy the cancer cells.  I suspect (but won’t know for sure until I talk to my medical oncologist) that the game changer is once again the PSMA PET scan technology that allows the T-cell to be trained to recognize the prostate cancer cell, latch onto it, and destroy it.  

So, the hope is that I will pass the 13 screenings I have here in Houston this week, be able to enter the clinical trial, and persuade my insurance company to approve the three-week hospital stay that will be required during the first few infusions.  If all of that happens, and I tolerate the dosage without any serious adverse effects (which would get me kicked out of the trial), I do believe that – much to my insurance company’s chagrin – I will be stayin’ alive for a good deal longer.  But trust me, the ladies are safe in the meantime.

Until next time,



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