Sunday, February 18, 2018

Now in Kidney Free!

"Has anyone gone over your CT scan?"

Dr. Wallace walks into my room, situating herself between Liz on her recliner and me on my bed. Dr Wallace is kind but no-nonsense. Practical. 

"Your scans show metastases in your lungs and especially your liver. The largest is up to 7 cm at this point."

I know she continued but I had already tuned out. A day earlier, I was signed into the ER here because my hemoglobin was suspiciously low, causing me to constantly near-faint. Now I have metastases? Already? I just completed my "No worries, I survived" tour. Now I have to make a "Cancer strikes back" blog? This is so embarrassing.

After the bad news, I got a free ride down to the GI clinic, where they put me into a twilight and cram a camera contraption straight down the ol' gullet. When I come to, Dr. Goyal is showing me a picture of the ulcer in my duodenum, that transitional area betwixt the stomach and intestine. I thank him more cheerfully than perhaps the situation warranted (anesthesia!) for finding the source of my missing blood cells and enjoy my free ride back up to room 2252.

Unsurprisingly by now, the duodenal biopsy came back positive for cancer. For those not counting, we're up to three now! In cancer forums, metastases are referred to as "mets" for short. I didn't have anything against the baseball team before, but I think I may root against them this season.

Couple days later, down to the cancer clinic we go, getting our targeted therapy on. Liz and I spend all day in the clinic, from about 7 am to 3 pm. All the cool doctors stop by. Feels kind of like buying a car. Numbers, charts, all blurring together. They run all sorts of options by us, but my low hemoglobin keeps me out of the current studies. We choose the next best thing, taking a combination of pills to eliminate some cancer-based angiogenesis and an infusion every 21 days to potentially reverse these suckers to kingdom come. This is an already-completed study, performed by the very doctor whose patient I am, for which he has just given his presentation announcing his supported findings. We have a winner! 

I'm happy to report that so far, no real side effects of the first drug. Second drug? Well that was originally scheduled for this upcoming Wednesday, but I hit a teensy little snag at my cranial MRI a few days ago.

Fast forward to now. I realize this is all written in present tense, so it's always felt like now to you, dear reader. That's a fancy writing trick from fancy writers. I'm picturing ones with sleeves like in Interview With The Vampire where Lestat says "Oh, Louis, still whining after all these years..." and flicks out his sleeves, invigorated. Y'know, fancy.

Right, so: now. I'm back in the clinic here, composing my blog while I wait between waiting rooms. Those endless rooms of waiting. Got my latestest test results in, and...not really a shock anymore, but: brain tumor! I'm getting perilously close to completing the set. Collect 'em all, I say. Usually.

Don't want to bury the lede here, so hey, what's a little brain surgery this upcoming Thursday? Check this out though: I go home (probably) the next day. Yuss! Tired of these hospitals. IV machines won't let a fella sleep. No infections and I'm free to go!

Guess who's got two thumbs, one kidney and is getting a plate in their head? This guy! Gonna need a special scan or TSA-pre from now on, y'all. Upside of this little sucker is that he's not converted brain matter, just some random interloper. Thus, removal, especially since he's near the edge, make this roughly 1×1" intruder a g-g-goner. Out, damn spot! Out!

Just like so many of my other tumor whatnots, these are mostly asymptomatic so far. Catching them while the catching is good. Like Pokémon: Stay. The worst part is the low hemoglobin. Turns out that stuff is important. Who knew?

To boringly reiterate my soapbox from last blog, I've seen these prices on the drugs and goodness me-oh-my. One month of one drug is over $14,000. I don't know how anyone could pay these prices. I'm fortunate to have a quality cancer center in my town. They provided me with forms allowing the drug companies to ask cancer institutions for money on my behalf. Not sure exactly how much they provide but there's no other conceivable way to pay for this. Kind of a sneaky way to get their ridiculous prices paid if you ask me. I don't know how I feel about it. I don't really have a choice though. So, again, welcome to an inside look at our healthcare system. Bizarre and messed up. As long as their support keeps me in the meds, I'm good. Fingers crossed.

So, in conclusion: I have a few of these metastases. That rhymed. Doctors are letting the body metasateseses brave the infusion, but dat brain one hopped straight to the front of the line. Removals, right this way, please. You and the edema you rode in on. Enjoy the pathology bucket! 

I will end on a lighter note. Not every visit to the doctor has gone poorly, I'm happy to report. Why, just yesterday I stopped by the ER because I had a strangely swollen right testicle. Where does a cancer patient's mind go? Duh. So I had it checked out. 

Ordinarily, among all this other "important" news, this would never have gotten a mention. However, as my doctor rounds the curtain, he announces himself as Doctor Johnson then asks about my testicle in his Outside Voice, I had to work hard to keep my expression from changing. I mean, c'mon. Doctor Johnson? All results were surprisingly normal, no IVs, no phlebotomizing, just a little pee, a little ultrasound, and the normality of my testicle was loudly touted for all to hear and enjoy.

Monday, November 27, 2017

Good Thing I Had A Spare:

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. 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.