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!
Our company, Castle Worldwide, was recently purchased by Scantron. Scantron, in turn, is owned by Harland Clarke, which should be familiar to you if you write checks: their name is on the bottom-left corner of every check I’ve ever seen. Castle had been a 30-year-old privately-owned company with a very small number of individual owners and with around 80 employees. Now, we are part of a big company, which is owned by an even bigger company and which has many, many thousands of employees all over the world.
There’s a lot of positives to this transition. The main one is that we keep our offices in Morrisville and continue to do what we do, albeit with more oversight. For my department, Business Development – we do the contracts and proposals and drum up business – it means getting more approvals on things like pricing, etc. It’s all good, and understandable, and we are learning to adjust to new timelines and new processes, which are being created as we go and figure out what works.
The more stressful transition has been figuring out all the new HR stuff. HR, payroll, and other things are managed by Harland Clarke, which has many, many companies under its umbrella. I’ve been used to the comfort of a small company where I can go over and ask our awesome HR person any question and get it handled.
My particular stress lately has been over Family Medical Leave Act (FMLA) processes. FMLA, which was implemented during the Clinton administration, “entitles eligible employees of covered employers to take unpaid, job-protected leave for specified family and medical reasons with continuation of group health insurance coverage under the same terms and conditions as if the employee had not taken leave.” In other words, if you have someone sick in the family that you have to care for, you can take unpaid time off to do it and your job is protected.
We had some health issues come up in the family a couple of months ago that are ongoing (to be written about in a future blog entry), so my awesome Castle family advised me to go ahead and file for FMLA. This included getting a federal form filled out by the doctor, who outlined the medical issue and the kind of time I’d need to have to support the family member. The process, once completed, relieved a lot of fear on my part that I’d have to use up my PTO. I’ve been able to use a couple of hours here and there to go on doctor’s appointments and save my PTO for vacations.
Now that I’m under new management, and given that this week I needed to use FMLA time for an appointment, I needed to figure out the process under Harland Clarke. We had the Scantron HR person in the offices this week to help us learn about our new log-in systems for doing our time sheets, requesting PTO, and other things, so I asked her about how to log FMLA time (e.g., is it under the PTO or under time sheets?). She directed me to someone else from Scantron, who called me to walk me through it.
However, during the call, she explained that I needed to call another company (UNUM) to start the process. I immediately had images of being put on hold forever and having people from this new company not know who I was or what I needed. I began to get a little panicky. I’ve always had a fear of being just a number and getting lost in the shuffle, which is why I attended small private schools my whole life and gravitate to smaller companies like Castle. Like the song from Cheers, I want to be “where everybody knows your name,” and where I know everyone.
I avoided making the call for a bit, then finally sucked it up and called. It turns out that UNUM is a big benefits company that other big companies (like Harland Clarke) use to manage their leave for things like disability and FMLA. I was on hold waiting for an operator to help me for about 15 minutes, then a young-sounding man came on the phone and started asking me my name, my social, my employer, my date of birth, etc. He didn’t explain why he needed this information (was he using it to verify my identity, or to steal it?), and I was too cowed to question it, so I gave it all.
I wrote in another blog how I would rather do things online rather than talk to a person; in this case, my feelings were amplified because I had to spell everything out. My street address has a weird spelling, and my last names (maiden and married together) are super-confusing. Wouldn’t this be easier if I could do it online and not have to literally spell everything out to a person? I decided to entertain myself by turning it into an exercise in trying to remember the aviation alphabet (“H as in Hotel, A as in Alfa, N as in November….”), but found myself getting it wrong half the time (“is it Y as in Yellow? No, Y as in Yankee….”). Although it doesn’t really matter if I get it “wrong” (as long as the person on the other end gets what letter I’m trying to spell out), I like to try to get it right because I’m that anal. 🙂
After about a half hour on the phone, we were done with him collecting all the possible information he could have on me, and he indicated my account was created and the claim request begun; I’d find out if I got approval in a couple of days. I again internally panicked – IF I got approval? However, I decided not to panic with this guy, as every time I’d asked a question that deviated from his script, he was clueless. (E.g.: “I already had the doctor fill out the federal form for FMLA – will UNUM accept that one, or do I have to have the very busy doctor who is trying to save lives fill out another one?” “I don’t know, they will tell you want they need once they review your case.” Uh, ok.) At some point, I will know IF they accept my claim, and if they do, whether the doctor has to fill out another form.
I do understand the need for UNUM’s services, given how big Harland Clarke is. It makes perfect sense. But it’s a transition that is challenging me to be ok with knowing that indeed, I’m now a number (and that it’s an 8-digit number that begins with an A as in Alfa). It’s time to stick my toe in the big pond and deal with my fears that I’ll be lost in the shuffle and/or that I can’t handle figuring out HR or other policy stuff.
The thing I’m most proud of here? I’m shutting up my questioning, panicky voice that makes me crazy whenever I encounter new things like this. Rather than raging against the machine, I’ve accepted that it is what it is. I will follow the procedures, and if/when things don’t go right, I will trust myself to figure out the next steps. I’ll take it as a growth opportunity and transition from being a scared small fish in a big pond to a fish who trusts herself to handle things as they come. 🙂
This past week I went to see a sports massage therapist (John Stiner of Stiner Massage) to look into the issues I was having with my painful right hip. I went to John because he’s not just a massage therapist; he’s someone who looks at your whole body to diagnose what’s going on and then provides exercises to help you fix the issue.
John tested my muscle strength in different parts of my body by putting his hand on an arm, leg, etc., then had me match or resist the pressure he was applying. I did pretty well until we got to the abs. I was lying on the massage table and he had me lift my legs up so my legs were at about a 145-degree angle (like in the picture below). He put his hand on my shins to push the legs down and asked me to match his pressure. Down went the legs!
I sheepishly said, “Yeah, I have weak abs.” He looked at me and said, “Not necessarily.” He asked me to lift the back of my head to bring my chin to my chest, then do the opposite motion of tilting my head back so I was looking behind me. He then had me lift my legs again and match his pressure. This time, the legs stayed up!
I was astounded – what happened? John indicated that my abs aren’t “weak” – they are just asleep (i.e., not firing). The muscles on the back of my neck are tight and overstrained (desk job, anyone?), and the action of tilting my head back released the neck muscles enough to allow the abs to wake up and do their job.
John found two other areas where a tight muscle in one area was resulting in another muscle not firing – and in all cases, the one that was not firing is a big important muscle that should be doing the work that the little muscle was overstraining to do. The hip pain I’d been experiencing while running was caused by a tight right iliacus muscle (one of the hip flexors), which was trying to do the work of my sleeping right glute to propel me forward during running.
Here’s why: a band of muscle criss-crosses our bodies and goes down through our legs in what’s known as the spiral line:
I was astounded by all of this, mostly because I always believed I have “weak abs” and “weak glutes.” But what I was hearing from John is that my core (and my glutes) aren’t weak. They are just asleep. Doing core exercises without dealing with the actual problem – an overly-tight smaller muscle that is trying to do the work of the bigger muscle – is not going to solve anything. I’ve been trying for years, and it hasn’t worked.
So what’s the solution? Retrain the brain to fire up the sleepy muscles. That requires a three-step process that John taught me: Release, Activate, and Move (or RAM).
First, you Release the tight smaller muscle by triggered massage in that area (e.g., for the iliacus, I massage into that area). This is where the Muscle Hook I wrote about last week is amazing.
Next, you Activate the larger muscle (e.g., for the glute, it’s one-legged bridges; for the abs, it’s leg lifts).
Finally, you Move by walking around briskly for 2-3 minutes (John said to pretend I’m walking through Atlanta airport in a hurry). Then repeat. Do it multiple times for each pair of muscles: iliacus/glute, leg muscle/obliques, and neck muscles/abs.
So far I’m seeing good results. When I activate the abs, for example, my plank is much stronger and I stand straighter. When I massage the iliacus and activate the glute, I can feel it firing – POW!
The sound of my glutes firing. (I would like to edit this sound file to just one second, so let me know if you know how on a Windows computer.)
Note: it’s going to take a lot of RAMS (and using my stand-up desk daily at work so I don’t encourage the bad muscle habits that are caused by sitting at a computer for hours) to undo this. I have years-long brain patterns that have learned that the smaller muscles should be doing the work of the bigger muscles. My job, then, is to wake up those bigger muscles and have them take over from my poor, abused leg, illiacus, and back neck muscles, which keep trying to make my body stand erect, but can’t (as it’s not their job).
So if you have been told you have “weak” abs or glutes, maybe they’re not actually weak – maybe they are just asleep! I thought this information was worth sharing, as I had never realized this.
Do you have any body imbalances that you’ve found, and a cure for them?
We Hansleys are spoiled by our Amazon Prime membership. Personally, I love being able to get whatever I want delivered within a day or two without having to drive anywhere or having to talk to an actual person. Its only limit is groceries, even though Amazon now owns Whole Foods and allows you to order groceries online for pick-up at your local store. However, I like to pick my own produce. After all, how can I count on a store lackey to know how ripe or unripe I want my avocados?
In the back of my head, I knew there had to be a downside to the greatness of Amazon. How are they able to keep prices and delivery so low and so efficient? Easy: they treat their warehouse workers like crap. Here’s a short list of articles for you to read if you haven’t heard all about it:
As with several things in my life (e.g., I love bacon, but feel horrible when I see the piggy truck going down Interstate 40 as they are led to the slaughter), there’s a whole lot of cognitive dissonance going on here.
I had the opportunity to break away from Amazon today, and LORD DID I TRY. I need to buy a massaging stick that was recommended to me by my PT/massage therapist yesterday during my session to figure out my hip issues (I’ll write on that another time). He had something called the Muscle Hook (here I go, linking back to Amazon! I’m incorrigible!), which is an amazing tool that helped me get right into my iliacus muscle and beat it into submission.
My massage therapist told me I could pick this up at my local Target – huzzah! Here was my opportunity to provide money to a local (or at least more local than Amazon) store and workers, versus continuing to line Jeff Bezos’ pockets! Off I drove to the Target at Southpoint, which was a terrible idea because the traffic from RTP to Southpoint on I-40 was horrible after work. Still, I was proud of myself for wasting time and gas to go not support Amazon!
Guess what? They didn’t have the damn hook. (But they did have some spectacular avocados. I bought three.)
I was unwilling to give up, so I drove to the Target off of 15-501. Guess what? They didn’t have the hook either. (But I did pick up a red pepper to make some gazpacho, since the other Target didn’t seem to have any.)
I’m now home and grumpy. And guess what? I am, in fact, going to buy the darn Muscle Hook off of Amazon after I post this. Because I tried to be good, but there’s only so much pointless time-wasting I will do to find something local. It doesn’t make me feel happy to purchase it from Amazon, but at least I’ll be able to work on my hip muscle in approximately two days (thanks to free two-day shipping).
Question: what would you have done (or have done) in this circumstance? If you use Amazon Prime, are you troubled by it? Or is it just me? Inquiring minds want to know!
I did 12 miles at Umstead yesterday. It took me almost four hours to do those 12 miles, thanks to hip pain that manifested itself halfway through my out-and-back run.
The worst part wasn’t the physical pain; it was the mental calisthenics my brain put me through as I tried to deal with the disappointment of not being where I want to be. During that long walk of shame, I had to contend with two competing truths: while you can do anything you set your mind to, sometimes it’s not going to happen the way you planned it. Your body can be a limiting factor, and you have to contend with that reality.
This 12-miler is part of my training for the Richmond Marathon in November. I signed up for it to start preparing for my bucket list race: the Umstead Trail Marathon, which is held at William B. Umstead State Park in the Triangle area of North Carolina. A trail race sponsored by my running club, Carolina Godiva Track Club, the Umstead Marathon has a cut-off time of 6 hours (or a 13:42/minute mile pace). One would need to be able to run a road marathon in 5 hours at most (an 11:42 pace) to complete the Umstead before the cut off, since trail running is slower than road running.
My last marathon was the Nike Women’s Marathon in San Francisco in November 2009. I ran it as part of Team in Training to raise money for the Leukemia and Lymphoma Society. (That race no longer exists, but here’s someone’s blog post about it from the last time it was run in 2013). My time was 5:59:02, so to run Umstead in under 6 hours, I have to be able to run a road marathon an hour faster than I did nine years ago.
I set a goal for myself: since I did Nike for my 40th, I would do Umstead for my 50th. When I set this goal in February 2017, I was 40 lbs heavier than when I’d done Nike and a lot slower. But it seemed a reasonable goal: since I turn 50 in August of 2019 and would do Umstead Marathon in March 2020, I’d have three years to lose the extra weight, build up to longer races, do trail running, and get faster. I was confident I could do it.
I started off well. Over the course of 2017, I trained for and ran two half marathons in October (Hillsborough Half, which I’m doing again this year, and Bull City Race Fest). My times were not great (3:01 and 3:04, respectively), but I was happy to be going the distance and finishing strong.
Feeling good about my road running, I signed up for a bunch of trail races for winter 2017-2018 (the Tough as Trails series from Bull City Running). I did the first of the trail races, the six-mile Eno River Run, and had a great time; I even managed 16-minute miles, which was a good start toward my goals. At that point, I thought I was ready to sign up for a full marathon for the following fall. I picked Richmond because I’d heard great things about it and wanted to use it as an excuse to visit Richmond.
Then injury struck: knee bursitis. Ironically, it wasn’t caused by any of the running. It was me jumping up and down on a hard concrete floor during a boot camp class. The running then aggravated it. The bursitis lasted all winter, but I managed to complete (wearing knee braces and mostly walking) the other three races that were part of the Tough as Trails Series: the 10 mile Race Across Durham, the Uhwarrie 8-miler, and the Mountains-to-Sea 12-miler, where I finished dead last. (Yes, dead last finish trumps did not finish or did not start. But still – I’ve never finished dead last in a race before, and it was a little humiliating to realize that the race directors called Bill when I hadn’t made it to the end by the time they expected me to finish.)
So here I am, starting over post-bursitis, with the Hillsborough Half scheduled for October and the Richmond full for November. I’ve been doing my training runs (2 short runs during the week and one long run on Sundays). The schedule I’m following goes up and then down every weekend so you rest each weekend a bit following your increase. I started with 6 miles, dropped to an hour, up to 8, down to an hour, up to 10, down to an hour, and then did 12 yesterday.
During that long slow gimpy walk to the car, I was thinking a lot about my plan. What had gone wrong? I should have been able to do this, right? I was doing all the right things and working my plan. So why was it that since my 8-mile long run, things started to fall apart? On the 8-miler, I felt gimpy at mile 7, but still finished. Then two weeks ago, for the 10-miler, same thing happened: the hip started to hurt around mile 7. This hip pain at mile 7 wasn’t new, then. I should have paid attention, but I thought that if I followed the plan, it would all be ok.
I like to believe that I can think my way out of anything and achieve anything I set my mind to, but sadly, reality got in the way. My body obviously has a mind of its own, and its little mind (which appears to be angrily and painfully residing in my right hip) apparently trumps my frontal cortex. I have to face it: my body is not ready for a marathon. And it doesn’t matter why that’s the case. It’s just not ready.
I’m thus going to drop from the full to the half for Richmond, and will still do the Hillsborough Half. I haven’t given up on my dream to complete the Umstead Marathon. But at this point, I’m not setting a date. I’m meeting my body where it is – going to PT and massage therapy to figure out the hip issue and train safely for a distance that I know I can handle. If for some reason I can’t work out the issues with the hip to do the halfs this fall, I will drop them, but at this point, I am planning on doing them and will keep doing the training.
But I haven’t given up on doing a marathon during my 50th year, even if it’s not Umstead. Richmond Marathon 2019, anyone? 🙂