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. 🙂