A Melodrama in way too many parts
"Do I need to check out at the front desk or anything?" I said to the ultrasound technician. At the end of August, I'd gone in to see if the firm spot in my lower abs was a hernia.
"No, you're all done. Good lu-...Have a nice day," she replied.
At the time, I thought "Ha, telling a patient 'Good luck!' is probably not a great thing for medical professionals to say." In retrospect, this must be her usual patient sign-off but she caught herself and changed it based on what she found. An hour later, the doctor called to see if I could come in for a CT scan ASAP. There was a large mass on my kidney.
Thus began my adventure as a cancer patient.
This post is intended to answer as many questions as possible about my diagnosis, treatment and current condition.
How was it discovered?
One normal evening after a normal day, spending normal time with my normal(ish) S.O., Liz, when a normal hug from an unusual angle put her hand on an unusually firm spot on my otherwise normal abdomen. It wasn't super obvious nor pronounced, but, like Ryan Gosling's crooked eye, hard to un-notice once pointed out. We googled'd it and came up with everything from Hepatitis to Liver Cancer to Inguinal Hernia. The lump seemed too low to be my liver or anything super vital, and was frontal. I put my money on Hernia. I regularly played softball and the whole sprinting-while-scooping grounders and throwing on the run seemed a plausible cause.
Turns out, Clear Cell Carcinoma of the Kidney is often minimally symptomatic. I had no outward signs like acute pain nor blood in my urine (TMI?). The tumor measured 13.5 cm X 9 cm X 5 cm, appearing in scans larger than the kidney it had displaced significantly forward. The fact there were no blatant signs was impressive. In retrospect, though, my lifestyle had done a great job of masking any fatigue because of my late nights working and disguising any mild back or side pain with the two nights of softball weekly. I just thought age was catching up with me, making me tired and creaky. On the bright side, at least I am not yet that old.
Seems like an obvious statement but it's hard to convey how quickly and how severely one's priorities change. Suddenly my To-do List included items like "Living will." I gained a second job of coordinating appointments between facilities, keeping notes, organizing information, undergoing tests and sitting in waiting rooms. Talk about a lousy unpaid internship. Er, well, that analogy doesn't hold up, so imagine a very clever joke for comic relief involving lack of compensation. Ah, now the accumulated tension is somewhat alleviated through the healing power of laughter. We all feel better and can move on to the next section. Unless you're enjoying this meta sidetrack. I mean, I can keep going. Who really wants to talk about cancer anyway? Seems like a great way to bring down one's day...
Why keep everyone in the dark?
Until I had a reasonably complete picture of what I was facing, I didn't want to tell anyone what was going on. Once the verdict came down of Stage 3 Renal Carcinoma causing a thrombosis in my vena cava and requiring radical nephrectomy of my right kidney, I informed my immediate family and the few colleagues for whom my surgery schedule would have an impact. I debated whether or not to tell additional people, how many, who, how, etc. I had fun imagining bizarre and stupid gallows humor jokes to use in general announcements on social media, some of which I may include here to break up the monotonous monolith of text.
I consulted with a close friend who had undergone a major surgery and how he dealt with informing people. His valuable advice boiled down to "keeping yourself mentally healthy is priority over anyone's feelings." As much as I wanted to let you all know why I was kind of unavailable (which isn't that different from my normal, daily hermit life), I also was experiencing massive anxiety and dread about my upcoming surgery. It isn't every day you hear you'll *only* have a 5-10% chance of death on a specific upcoming Wednesday.
For someone pretty uneasy with needles, the idea of having your midsection cut wide open is quite unnerving. As a result, my coping mechanism was to stay as busy as possible to keep from thinking about it. Denial seemed the only method capable of managing my stress at all, let alone go into surgery in the best possible health. My logic dictated that higher number of folks informed, the higher probability of well-meaning interactions reminding me of my perilous position. On top of that, recipients of the news were powerless to help and may experience their own anxiety over what to say or do or outcomes, etc.
So: silence became my strategy.
Blah blah, get to the point: What happened?
I'm happy to report that I just passed 4 weeks post-surgery and am feeling about 90% normal. Finally starting to get my wind & stamina back and no longer live in fear of coughs nor sneezes. When sporting thirty five staples across my abdomen, sudden core movements were on par with a prison yard shanking (assuming TV has portrayed it accurately). Bending way over for shoe interactions or twisting with force are still not comfy but increase in comfy-ness by the day. What was an anxious, near-panic, roller-coaster few months is now down to a slightly relaxed work schedule while this belly of mine heals.
The good news is that the surgeons were confident the primary tumor is 100% out, gone, finito, adios, sayonara, etc. Additionally, both my removed adrenal gland and lymph node checked out negative for lesions. Stoked on that, except for the 50% thrill reduction from engaging my fight-or-flight response. Get it together, lone adrenal gland!
My 7 days in the hospital recovering were not my favorite. A few dozen strangers barging in at random times to stab me with needles or put various materials into my various holes takes adjustment. Unfortunately, no acclimation period is provided. You just kinda wake up there in the room full of tubes and whatnot. I never before realized the impossibility of getting good sleep as a hospital patient. If a nurse isn't putting a blood pressure cuff on you or feeding you a pill, an IV machine starts beeping. The interruptions are non-stop. And don't get me started on the N.G. tube; four and a half days with no food nor water tested the limits of my sanity.
Fortunately, Liz, my mom and a couple others were staying around in boring, uncomfortable shifts to keep me company so I didn't lose my mind. While I'm sure at least someone reading this would have also visited, as much I appreciate the support, I spent most of my time loaded on painkillers and half-asleep. You didn't miss much.
Oh, speaking of painkillers, I guess a good shorthand for how things have been going after being granted injection parole: I haven't taken so much as a Tylenol™ since arriving home. The drive away from the hospital on the long bridge over the bay Halloween afternoon felt like a victory and still feels that way.
Looking forward
From here, there's still a lot of monitoring to ensure that any secondary trouble spots are caught early and treated. I may have some follow-up treatments anyway, depending on what they think is best. My oncologist appointment is soon to go over all that stuff. While I'm not certifiably, 100% out-of-the-woods, this is so far the best possible outcome considering the circumstances, not to mention how much less psychologically taxing it is knowing there is no longer a giant tumor in there. Ahhh...so much more room for my other, more loyal organs. And let that be a lesson to them! You try to kill me? I KILL YOU! Right in the garbage! So, like, work properly and stuff or you get the knife!
That's more or less it for now. Seems fun to wrap this up by threatening my own organs, so hey, carpe the diem. I hoped to be as thorough as I could here, but feel free to ask if you have anything you want to know. I don't mind talking about it.
Oh, there is one more thing:
Healthcare Soapbox
At the risk of sounding preachy, I would like to remind people as they read about the healthcare debate in the news about what effects this could have on people like your lovable old pal/relative: me.
Before insurance companies were barred from exclusions based on preexisting conditions, a freelancer like myself couldn't get insurance. Not for lack of trying nor budgetary concerns, either- I spent HOURS and HOURS filling out forms, sitting on hold, searching other providers for plans, etc. Non-group coverage for (at the time) married younger couples was considered too much of a risk even without any chronic or recurrent illnesses. They flat-out said "No. We're not underwriting any coverage for you." Had the tumor happened before the law changed, I'd be either bankrupt or headed for Stage 4 even with the Catastrophic Illness policy I bought.
Now, depending on how things go regarding metastasis, if the law changes back, I may again face the choice of bankruptcy or death. No melodrama or hyperbole intended here, just food for thought. If you're reading this, the people threatened by the healthcare debate are no longer a faceless mass; you know me and I'm in that group. Not that it justifies being able to receive care, but I've worked full-time (or more) for 22 years straight. Even with this surgery, I've still never taken more than 2 full weeks off work since I was 18. I'm already back to work, albeit not yet at full pace.
There's no amount of work nor productivity that can shield people from the massive expense of cancer surgery, testing, and treatment. This isn't a gamble anyone should have to take. We really need, as a first world society, to have guaranteed healthcare. Income and profit margins shouldn't dictate one's survival odds.
And, finally, I'm so thankful to be here that I would have totally won Thanksgiving if anyone had kept score. Unless it's by plates eaten rather than thankfulness, in which case I would have tied at best.
