It’s 2019, and some 19 months after my initial diagnosis, and things could not be going better – save the cancer just magically going away. The first-line treatment I’m on is still all about testosterone deprivation, called ADT. I’m on 3 overlapping meds for this – two orals and a monthly injectable. My PSA scores on this treatment have dropped from my crazy high of 211 down to “< 0.01 ng/mL”, which means that it’s too low for the lab test to even measure. When ADT stops working one day, we’ll figure out what’s next then. Until then, I’ll take it!
I’m thankful and super-fortunate to have world-class cancer care literally within walking distance of my office. I’m also thankful and super-fortunate to have great health insurance and the means to afford my care. I get that the rest of the country is not so equally fortunate.
My day-to-day life looks remarkably like it did before. The only physical things I deal with from the treatment are still all side effects from the meds and of having next to no testosterone in my body – muscle mass loss, sexual side effects, and the occasional hot flash and crying jag (guys turn testosterone into the tiny amount of estrogen we need, and no testosterone means no estrogen, hence the manopause side effects.) But I thankfully have no cancer symptoms at all. Oh, and naps – I’m a bit more napish than I was before. Naps are good, right?
Travel continues within the limits of free cash and Susie’s available vacation time. Since last year, we’ve done San Diego, Australia and New Zealand (thanks Mom!), a Bahamas cruise (On-on!), and a super-quick Disney weekend with Bon.
I’ve passed 2,000 miles on the bike for the year, and I’m not done yet! I’m off to Florida in a few days to ride 160 miles in a BikeMS event down there – thanks to those of you who supported that! This ride will be a replacement for Hurricane Dorian causing the cancellation the usual New Bern ride back in September.
I’m raising money for Movember again this year. Last year’s response was overwhelming. You all helped me raise over $7,623 to help address and treat men’s health issues – including prostate cancer. Please consider donating – and sharing my story with your people. Awareness of this disease – and how it can show up in non-standard and unexpected ways like mine – is one of my missions.
Thank you all, for your love and support and prayers and donations and time!! The outreach from you all in all these ways – and others – had been overwhelming and fantastic, and so much appreciated. I’m am fortunate and grateful to have so many wonderful folks who love me.
I’m launching a fundraiser for the Movember Foundation for the month of November. The Movember Foundation does great work with men’s health issues: prostate and testicular cancers, and mental health and suicide prevention. They’re funding a Prostate Cancer Research Study that I’m participating in that is trying to correlate care decisions and changes in care to quality of life.
My crazy goal is $10,000 – the most I’ve ever tried to raise for a cause in one go, and you can help me get there. I’m fortunate that my care has gone so well in the several months since my diagnosis, and I’m working on ways – like my fundraiser – to help make that available to more men. (Movember Foundation on Charity Navigator).
Just a few of the other efforts going on around this month-long hoopla:
I’ve jumped in with both feet and done not just the traditional shaving to grow a ‘stache for the month of November, but I’ve done my whole head! Thankfully, my guy Smalls knew what he was doing with a straight razor.
I’m pledging to ride this insane ~12hr indoor bike ride at the end of the month in an effort to become a Knight of Sufferlandria. (Bike friends, if you want to come ride part of the day with me, I’ve got an extra fluid trainer – or bring your own! All support is welcome!)
There will be a silent auction for interested folks and giveaways as well.
HansleyLove hasn’t posted in a while because this particular blog entry needed to be written and published. It took a while to process and share publicly. Here’s the story.
Starting in Fall 2017, I started having random bone aches and pains. At the time, I chalked most of it up to getting older and having trained for and ridden my first double century ride in September 2017 at the MS150 in New Bern, NC (and on a slightly-too-small bike at that). I tried staying off my bike for a few months, then building and riding a bigger bike for a few months, to no avail. The bone and joint pain got ever-so-gradually worse. In early 2018, over a couple of months, I tried getting PT done and getting my bike refitted. It helped a little, but not completely.
On the Sunday of Memorial Day weekend 2018, I had blood in my urine (ruh-roh… that’s not good). I already had an appointment scheduled with my primary care doc for the Tuesday after Memorial Day as follow-up from a tick bite and likely Lyme disease. I mentioned the blood-in-the-urine thing to him, he responded, “Well, that’s concerning,” and the lab tests commenced. Within two days, I had the lab results showing hugely elevated PSA (aka prostate-specific antigens, which are produced by prostate cancer cells), and another elevated lab result (alkaline phosphatase) that showed that there was likely bone involvement in what I had going on. A bone scan showed my bones lit up with metastatic prostate cancer.
My PSA is WHAT?!?
This led into a very dark weekend with some very bad Googling. We found some scary (and ultimately incorrect) survival statistics that freaked us out. Protip: Don’t google survival statistics when you just got diagnosed with cancer. Seriously, have you ever seen a grown man sobbing while watching the Tour de France?
The next week had me rolling in to get a prostate biopsy (seriously, ow) and my first visit with my oncologist at Duke. Since my cancer had escaped my prostate and spread to my bones in a few places before it was ever discovered, I skipped two of the common early treatment options that you typically hear about for prostate cancer: surgery and radiation. My best treatment option at this point, the oncologist said, was ADT (androgen deprivation therapy); it works by zeroing out all testosterone in the body, which is the primary driver of prostate cancer. At that first oncology visit, I was offered two options: ADT plus chemo, and ADT plus another ADT drug that worked to further drop testosterone. Studies showed both courses were equally effective, so given that I wanted to continue training for my second double century ride in September 2018, I opted for the non-chemo option (chemo makes you tired).
The two ADT first-line meds – Degarelix and Zytiga – started that day, and amazingly enough, the bone symptoms began to clear within a couple of days. The darkness from the previous weekend began to lift as we learned that even for the advanced disease that I had, I’m not going to die as soon as we thought I was going to; I have years rather than months, as Google had implied. Like I said, don’t take what you find on Google as gospel – it’s often old or outdated info, especially on quick-moving areas like cancer research and treatment. It sank in pretty quick for us that I’d never be cured of this, but that it would be manageable for a good few years to come.
ADT, in addition to zeroing out testosterone, also knocks out estrogen; men and women have both, in different ratios. The only side effects I’ve had so far have been related to having no estrogen, and these show up looking like menopause. I had a few classic hot flashes early on (waking up drenched in sweat, etc.), but they’ve moderated a bit, so I’m down to a few warm surges a week. Even if it were the full menopause list of side effects, it’s not a bad exchange for stopping the cancer in its tracks.
In the few months since that first visit, we’ve settled down to this as the new normal. Day-to-day, if labs, imaging, and path results didn’t show I had cancer, I wouldn’t know. I have days where I’m nappish, but I’m pretty sure that’d be happening without cancer as well.
The diagnosis has its upsides in that we are now fulfilling our bucket list items. Susie and I skipped out of NC right before Hurricane Florence in mid-September and had a fantastic time in Hawaii. I’m still cycling like crazy: I did another 200mi in New Bern in early September, I had a fantastic 56mi ride in Kona, HI a couple of weeks later, and I’m putting in a few hours a week in the garage on my trainer with Sufferfest as my digital coach. Exercise helps mitigate the side effects of the meds and helps moderate energy levels, so at some level, I fully believe that my biking is keeping me alive. In short, I don’t feel like I’ve got cancer, so I’m living life as wide-open as I can manage.
Susie’s been a rockstar of a wife, medial researcher, and care coordinator. Her research got us into the ways of Dr. Snuffy Myers, and while I have no hard evidence to back this up, I think that the overlapping therapies that he advises will keep my current mainline therapy working longer, and therefore keep me alive longer. Susie’s been at my side for every doctor visit, has read and shared countless journal articles and web threads, and has been an unbelievably steadfast partner, helping us get the important things in place: wills, relevant powers of attorney paperwork, and some solid financial planning that got us to Hawaii and will be getting us to other bucket list destinations. The trite saying is, “I couldn’t have done it without her.” The truth is, while I’m fiercely independent and I tell myself that I could have maybe gotten by on my own, I know in my heart that doing that would have been sad and lonely and a bunch of hard work, and I can confidently say that I wouldn’t be as well taken care of as I am now. She’s mine, she loves me, and I, her, and I am truly fortunate to have her by my side.
Five months in, we’ve put most of the darkness behind us. Both of our jobs have been nothing but supportive in letting us have the time we need to take care of everything. Family has been awesome, as have the friends we’ve shared this with.
If you’re reading this for the first time, I know you’re having all the feels right now, and that’s good and normal. The truth is, we’d love to hang out with each and every one of you – coffee, dinner, drinks, axe throwing, stupid adventures in the woods, biking, Catan, you name it. You can see with your own eyes that I’m not wasting away and you can ask all the cancer questions you want, or we can talk about how awesome our two and four-legged kids are and avoid the big C topic altogether. The important thing is that we want to hang with y’all. Send us an invite. Let us know what works.
Update: Be sure to read the followup to this, learn what I’m up to in Movember to help do something about prostate cancer at large, and what you can do to help! All this and more is here!