For the TL;DR crowd: there is no imminent danger and things are, for now, stable & sane. To the many people I owe messages: apologies for the delay and I hope this catches you up on the latest.
But first: Thank you. You, dear reader, thank you. Thank you for your interest and attention. Thank you for whatever it is we've shared that brings you here to read about my silly life wherein resonates a refrain of gratefulness.
It's been a whirlwind couple months. My previously-private struggle has become a public one, which for a hermit such as myself required a large adjustment. I don't say the following lightly nor with any hyperbole: Nothing could've prepared me for the tidal wave of love and support from all directions. It overwhelmed me, like a whole bottle of Tide in a single load of laundry. So much care, so many lovely comments and such generous contributions, I still mist up over it. Little salty suds overflowing from my...eye laundry? (Can you actually feel the metaphor stretching?)
I try to ignore the difference describing events for public consumption makes from the former jotting little journals for friends & family, but I can't. And I'm thankful. Hidden among the headlining problems was an underlying stress I hadn't realized existed until it was alleviated by so many of you reaching out in myriad ways. Your encouragement buoyed me through what was, so far, one of the most difficult, lowest points of my life. I'm a lucky fella.
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| (Depending on your device, you may need to click on images to see larger versions) |
Well, some may argue that "luck" wouldn't involve having my head sawed open. Maybe there's some truth to that. Since I last wrote, I was given five days between the brain tumor discovery and surgery date for adjusting to the mental image of my Mental Imager laying open to the air. One of those entire days was spent on more tests, 9am to 5:30pm, at the cancer clinic. What remained were spent channeling my manic, anxious energy into being productive, including writing the last blog. What made my energy so nervous? Perhaps the official title of my surgery will lend a clue: "Awake Craniotomy."
Yeah. Sounds fun, right? More on that in a minute.
First, after my well-tuned, finely-crafted teaser has you filled with suspense, I've decided that rather than get out my soapbox for this entry I'll get out my pedestal.
This is Liz. She somehow manages to keep up her work on a psychology PhD and crowbar time to stay here-- whether here is home or hospital or clinic-- consoling me, pushing me to get out if I can or stay in if I'm too weary. She challenges me but never nudges too hard. I don't know what I'd do without her, my true teammate in the struggle we face together.
I want to express gratitude to my family who have taken turns enduring the guest room air mattress so they can help out/hang out with me during recovery. I also want to specifically and publicly thank those of you who chauffeured me to & from appointments, those whose contributions helped me afford the time off, and all of you whose offers of aid and whose check-ins kept me feeling the love.
Surprise! You need to sit down now
(Or: Battling the Hemo-Goblin)
Of all the life changes my medical adventure has wrought, the most impactful has been the anemia my duodenal lesion granted me. Where once I played center field twice a week in addition to home workouts, thanks to internal blood seepage I hit a point where I required lying down for 5-10 minutes to catch my breath after walking upstairs to my office. Might as well be a tumor in whatever gland secretes pride. Something so much less headline-grabbing than tumors or surgeries- a simple drop in red blood cells- and one needs to redesign even their most basic routines. In this case, the revisions mostly involved strategic distribution of folding chairs throughout the house.
The irony of brain surgery left my head to heal normally yet my torso tumors ran amok as though they were employing the classic "quick, I need a distraction" from every action film ever. Steroids, required to control the swelling in my head, forced me to stop the chemo treatments I'd begun for treating my array of bodily metastases, causing a sharp regression in my health. Those sneaky [new synonym for tumors needed]!
Everything seemed fine until I felt symptoms similar to what landed me in the hospital in January. They accelerated more quickly this time and while I hoped to get a couple outpatient units of blood, visiting the ER got me admitted to the hospital for 48 hours. From what I've been told, the average hemoglobin level for an adult male is 13-15. At my ER visit in January I scored 7.4, or half as much oxygen transport as I should have. At admission in March, I was at 6.2, which means I've grown more tolerant of the deficit. And that's...good, I guess? As an aside, I feel mildly ridiculous when medical professionals draw blood out one arm while putting it in the other. Tests, yes. I get it. Still something silly about it.
While I'm on this topic, I'd like to take this opportunity to thank the mysterious, kindly strangers whose gracious donation of their life essence has improved my ability to recover. Many people asked about donating blood for me, personally, once they heard about my needs. However, the process is fairly localized and restrictive, not to mention the blood typing goes way beyond "A-" or "O+" in these modern times, making an exact match unlikely. Instead, for anyone who wants to help, please donate, whatever your type, to your local blood bank in the way my anonymous benefactors did for me. Someone's life will be similarly improved-- or saved-- by your generosity. It's a tangible way to help those suffering from similar or worse conditions.
Anyway, so, yeah, I got off the steroids a bit early to enable resumption of my previous treatments. It pleased me to discover what one can accomplish when one is wheeled into one's doctor's office ghostly and writhing in misery. Really grabs their attention. Somewhere in this med switch-over process I learned that I had yet more metastases I'd somehow previously overlooked. Lord among them was Sir Psoas, the tumor that was suddenly making walking very painful.
From this, I had my meds adjusted yet again. This time, the prescription was- and I found this very unusual- more cowbell. Just kidding. It was morphine. If one's goal is wakefulness or productivity, I can solidly recommend not morphine.
During the battle with anemia and my new meds, I tried working. My valiant effort was vanquished when I failed to complete even one page in a full workweek. (Ordinarily, I finish approximately 20 pages in a week.) I'd total maybe two hours of work done between naps after trying for an entire day. Then I'd lose the next day or two going to the clinic or the hospital for blood. So far, in total, I think I've received something like 14 units of blood.
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| Those are Mr. Brady's eyes and teeth from the original photo, because they were better than the bad photo I used. |
Oh! I haven't even gotten back to my surgery. That's like, way more interesting than "wah wah, I kept running out of blood" or "pills this, meds that." I can confidently say that my brain surgery was easily top ten wildest experiences in life so far. Probably top five even.
Following the usual surgery prep, featuring nervous energy-fueled chatter with nurses, unflattering gowns and day-glow socks (with built-in grippy stripes!), I was wheeled on a gurney down to the O.R. containing about a dozen people who buzzed about their various tasks. I transferred to a table with arm extensions and was almost immediately zonked a bit with some anesthesia. I could tell because I didn't flinch for a nanosecond when, in front of a dozen strangers, a nurse pulled up my gown and catheterized me. Bloop!
Next up were the two gentlemen whose job was to electrocute me from ankle to wrist. Gently...once I helped them calibrate the amperage. Stung a bit until then. They run a current at regular intervals so they can measure the consistency, alerting them immediately if the a team member cuts any of my parts they aren't supposed to. To assist the neurosurgeon, I'd previously done an fMRI to help locate my primary motor and speech neurons relative to points on my skull. Thanks to modern technological advances, the Good Doctor can point a special camera at my head and see on a monitor an overlay of what areas to avoid in real-time.
In contrast to the assertions of the brochure, which led me to believe my consciousness would be securely encased in blissful darkness by way of IV drugs during the "opening" process, I recall precisely how it sounded when the drill and then the saw took turns chewing on my skull. Oh, and before that, I'd had to request a bit more Novocaine be placed in my scalp. Sadly, injection is the only available placement method. Right, and before that I forgot to mention the step of the lovely halo. Sounds angelic, doesn't it? Ahhh. Well, you may be surprised to learn it is affixed with pointy screws to the patient's skull to keep it stationary.
I remember helping them place the screws in locations that hurt the least. I also remember, somewhere mid-operation, misunderstanding a vocal directive from the surgeon regarding my body position as being a command to me and the immediate chorus of emphatic corrections of my misinterpretation, rendered mostly as "No," "Stop," and "Hold on" that erupted when I began assisting their placement issue myself. My awake, conscious, logical brain tells me moving during any surgery wins for Worst Idea but I will remind you, dear reader, that I was on loads of drugs. So many drugs, in fact, that when I heard my surgeon describing details to an attending resident, a minute frittered away before I realized it was my brain to which he referred. And, once realization poked me, I resumed drifting my stare around my blue surgical covering with a "...huh, interesting." That's a lot of drugs. Enough that I forgive myself for "helping" the surgical team. The real reason doctors kept me awake was motor and speech response tests. Those--the reason I was conscious-- I don't remember. I will assume I passed.
Guest Parade, take 2
Once the neurosurgeon casually announced my driving privileges were revoked, regularly attending my appointments an hour or so across town became a challenge. Liz had exhausted as much leeway as possible from her school, so eventually, the burden of ferrying me for hours of round-trip driving forced a temporary passing of the torch. My family rallied to the cause and my guest room became host to a rotating cast as parents and siblings took turns staying with me, making sure I got to those appointments. Friends filled-in between those visits. My social safety net proved itself astoundingly strong. In any other context, dear reader, society might frown on a net made of people. Thankfully, mine is made of good folks. And made figuratively.
The final intensive round of appointments remains my five consecutive days of radiation treatment. I so badly wanted to make a joke using "rad" but I already wasted that in Blog Number One. Maybe I should have ignored my shame, like Hollywood, and rebooted that joke. Or maybe I'm just covering for the fact I couldn't think of anything funny..? Nah, couldn't be tha-aat.
One millimeter. The maximum allowable movement during cranial radiation is one millimeter so the death rays only hit the bad parts, hence the plastic prison mask. If you're claustrophobic, I can solidly recommend not cranial radiation. Nurses reinforce bony landmarks on one's face as they make the mask from warm, melty plastic to immobilize one's head. I was put off by the idea until they told me I could keep the mask, at which point I did a complete 180 and looked forward to hanging out with rad, Eighties Grid Plastic Me in my hermit cave. Sadly, thanks to its locking edges, Rad Eighties Grid Me and I don't share the same hat size. Otherwise, Mask Me would have a library of headwear to model. As it is, his choices are limited.
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| Just realized I didn't specify: The hair will grow back in 6 months. Not the tumor. |
My 5-day irradiation bestowed this bald streak across my head. Thus, for now, I have become "Hat Guy" and have myself enjoyed the headwear library that Rad Plastic Me has not. Admittedly, I'm enjoying the excuse to feel comfortable wearing hats somewhere other than sporting events and theme parks.
When does listening to one's body end and becoming a whiny baby begin?
For a stretch in March, switching to those evil steroids had prompted a reversal of my previous healing progress. I believe I alluded to it earlier. All the graphs for all my blood stats zigged when zagging was desired and vice versa. I ended up hospitalized for transfusions on a weekly basis. My muscular tumors ached, especially in my right hip. I slept a lot. I bought a wheelchair. Not a fancy one, but my anemia and pain were so constant that the investment seemed worthwhile. Wise, even.
While difficult, I didn't despair. Instead, I got antsy to resume treatment, believing that we'd chosen well and my oncologist had me on the right track. I just had to last until it kicked in. I adapted. I shed my previous hesitation in asking for help. I used the folding chairs, the shower chair, the wheelchair. I built new routines around this series of chairs to get through the days..and I made it. With an army of friends and family, bolstered by the love sent from near and far, I made it.
My worst point was St. Patrick's Day. I woke up with no energy and white lips. I went in for blood and got stuck five times before they got an IV working. Four nurse's "misses" bruised my wrists with fiery pain. Then, right as the first unit of O+ started its way down the working tube, my temperature hit 101ยบ. The nurses conferred just out of earshot whether to let me continue. I barely held off the panic until they returned saying I could continue with the unit as long as my temperature remained constant. That was the closest I came to despair: feeling awful, seeing the tube filling up red and waiting for a "yes" but fearing a "no."
I've said it before and I'll never cease to attest that red blood cells are surprisingly necessary. Once my meds, diet & rest healed the ulcer enough to halt my internal bleeding, my energy made a shockingly rapid comeback. In the one week between my radiation treatments-- into which I was wheeled by wheelchair-- and my brother's visit, I had regained the ability to withstand lengthy periods on my feet. No longer was I napping or half-asleep all day. Neither was I riding the electric cart at the grocery store. I felt human again. Independent. Like an adult once more, able to stroll to the kitchen & back without needing to utilize the folding chair that had been a fixture there for months. Hope was restored. Normality seems plausible again, aside from the hats.
So that's where I'm currently situated. Well, okay, Twitter Guy in my head, my couch is where I'm currently situated. Metaphorically, I am here, on the precipice of a New Normal, working on completing as much of my lingering to-do list and home-reorganization as possible before I return to work. Mentally, I'm seeking a new balance between the PTSD of enduring life-threatening news & procedures and the newly-treasured quietude of routine. The truth is that I can't return to the Old Normal, the old Square One, because it's gone. However, I'm hopeful now that I can build a new, improved Normal, with enhanced appreciation features and sharper priorities.
I'll keep you posted on my progress.
Real talk
[I debated at length whether to keep this section and/or how much to leave included in the final draft. My intention is to temper expectations, to clarify to anyone who may have Googled my condition that the numbers aren't as dire as they appear. Neither are they breezily in my favor. The current 8% figure for five-year survival rate is based on patients who began treatment in 2001 or 2002. Many advancements have occurred since then that are to my advantage. And I'm (relatively) young. I may have a faster-growing Clear Cell variant, but I'm also responding very well to treatment. Thus, I'm attempting to share my balanced outlook.]
This entry took me longer to write because not only has a lot happened, but a lot has changed. Regardless of how I feel physically, I know my odds. Every day when I wake up, it's difficult to behave like an adult and not a Make-A-Wish kid. I want to be present in the now, not relive these moments of challenge. However, I find that facing down the probability of a reduced future increases pressure on deciding how to spend my time. It freezes me in place.
Do I work on productivity, sharpening skills, having fun, or daily maintenance? They're all necessary for mental health. For as much clarity as I experienced about my priorities initially, I now struggle to force myself to do real-world necessities. I'm certain, like most of this whole Cancer Experience, the challenge will ebb & flow. For this past week, building Lego sets from my hermit cave holds the pole position.
If you want to know what finally feeling closer to "normal" feels like, return yourself to the mentality of a kindergartner who doesn't want to give up at bedtime. The FOMO is pretty intense. [That's Fear Of Missing Out, to save the older crowd some Googling. (Google is how you search on the internet for the super old crowd.)] All activities are great so long as I focus on what's in front of me and not on the fact that any choice is exclusionary. Hermit life is not conducive to avoiding rumination...so it's a crapshoot of whether I feel more Zen or more fro-zen. Carbonite, not "Let It Go," for the record. I'm an adult.
These new scans encourage me, though I am wary of repeating my Holiday 2017 Overconfidence Mistake. What I do know is that I'm happy to be here now. Ten years ago, stage 4 renal clear cell carcinoma was practically a death sentence. New drugs are giving me a chance-- around 10%-- of cure, which was never previously possible. But, most importantly, they are giving me time. One of the drugs, on average, stops working after a few years. The other can eventually cause my immune system to turn on my organs. I need most organs, I'm told. But, again, I'm so thankful to belong to the group that experiences a significant rollback in tumor size under this treatment combination. Even if I'm not cured, I stand a decent chance of feeling completely normal again for a while. I believe the exact words from the nurse on the voicemail were "really excellent" regarding my latest results.
"Maybe he'll be one of the lucky ones" you might be thinking. I would argue that I already am lucky. I have you, dear reader, that cares enough about me to read through all of this with interest. The past few months have opened my eyes in a profound way to how many people there are scattered around the country and the globe who rally behind me for the fight. If that isn't good fortune, I don't know what is.
I will update again in another month or so. Until then, remember, no news = good news!
