Part 4

A few weeks ago, I'd decided to write a new entry to update everyone on my condition to share the good news about the better turn my health had taken. I had a bit of a wheeze, but otherwise seemed about 90% normal. Since then, I've undertaken an adventure at the hospital, roughly three weeks and counting as of the time I'm composing this paragraph. For those who prefer health spoilers to alleviate their anxiety, I'm doing okay and should be going home in a couple days. [edit: now two months from the day this was originally written]

Before we get to the ER, let's visit the original blog and check in with the good news:

Hats Optional

Today felt like a little victory. My hair, denuded by radiation, has reforested to the extent that after a haircut, it is now homogenized to a single length again. As much as I've enjoyed the excuse to wear non-stop hats for most of the year, I am thrilled that now they are an elective accessory. Any detail that lets me feel normal again is a welcome detail.

As much as parts of my internal life are permanently altered- priorities and perspective especially- my daily life, I'm very pleased to share with you all, is settling in to about 90% of my previous normal. Kind of creepily normal...if something can truly be creepy and welcome at once. Maybe eerie is a better description. I have a few extra things to watch for and do, but this feels great. I've been able to swing from the previous low from my last entry to be able to travel a bit and make use of the time while I feel good.

That I've acheived this amount of physical victory so far encourages me immensely. That I've been able to keep the bills paid and have time to recover without crushing financial stress amazes me. None of this- none- would have been possible without help from some very important sources I want to publicly thank and acknowledge:


GoFundMe donors: many of you reading this very generously pitched in to an overwhelming wave of support. Until I had this security, I didn't realize how much additional stress my finances were causing me. There was a huge weight lifted from under which I would have crumbled during the following months after the brain surgery. But beyond the financial part, psychologically having such a crowd of friends, family, colleagues, fans and strangers rallying behind me was very edifying. It helped rally me from depths many times. So thank you, everyone, and thank you to Alex C for setting it all in motion.

HERO Intiative: Jim McLauchlin was one of the first on the phone after the news broke widely. He and HERO have checked in on me regularly and provided me with invaluable support to weather the many ups and downs of my situation. To my colleagues: this organization is a legitimate support system for us. Don't be afraid to reach out to them and don't be afraid to donate to them. They put out a simple mission and carry it out very effectively.

Emerald City Comics & Games: My LCS was generous enough to help me sell signed comp copies and other items to raise funds. They've been very supportive throughout this ordeal and I hope the locals will support them in turn.

Marvel: They were the first to know and the first to help. They've given me the leeway to do what work I can do and kept me as busy as I can handle. Everyone is so supportive and caring, I truly appreciate how much they've helped me through this rough year.

Well as I write this from my mechanized wonder bed, I have just received word that I am a free man. My discharge is imminent and is the only context in which I prefer my name associated with that word. This (nearly) three-week adventure at Health Camp is about to be over.

It started on Thursday, Dec. 7th. I had walked downstairs from working on Avengers #13 pages on my way to refill my water. My wheezy lung, ol' Lefty, was bugging me a bit and I coughed hard. I went to the sink and spit up a mouthful of blood. Kept coughing. Couldn't stop. More blood. Started to feel hot and woozy so I grabbed the landline and sat down on the cold tile floor to try and catch my breath. Should I call 911? I managed to keep my panting just south of the cough line long enough to catch my breath. I needed a plan.

As misfortune would have it, I was scheduled to fly to Minnesota the next day for my mother-in-law's funeral. As a result, I had been packing which meant I had clothes etc. near-to-hand and ready to go. Dunedin Hospital is about 5-7 minutes away. Ambulance wouldn't even be here before I'd be at the ER. Before you consider this course reckless, I had already spent plenty of time this year experiencing and making work-arounds to deal with low oxygen. I carefully dressed, grabbed by laptop bag, made my way to the car and sat until I had fully caught my breath. Then, without incident, got myself to the ER.

Once there, the walk in desaturated my oxygen thoroughly but, anticipating this, I had seated myself in the nearest available wheelchair and pushed myself inside. They whisked me right in. Upon placing the pulse/oxygen meter on my finger, I saw a team of ER personnel flinch slightly at what I was a brief 58%. That's low, apparently. In fact, as I've learned since, anything under 88% gets medical staff in a bit of a tizzy. Thankfully(?) with the low hemoglobin episode in the spring and the gradual descent of Ol' Lefty, I'd again become acclimated to the low oxygen. This time, I'd compensated by increasing my hemoglobin like an athlete training at altitude. Anyway, so, basically being an endurance athlete aided me through the hospital check-in process.

My prize package was 5 days and 4 lovely nights in the ICU thanks to that one low oxygen saturation reading and the fact Ol' Wheezy was apparently collapsing. Turns out a rogue metastasis on a central pulmonary lymph node was growing into my left main bronchus, the jerk. Well, I showed it. Began radiation treatments directly from the hospital and got lefty to start reopening. On Monday, December 11th, I went home. Granted, they sent me with a new droid sidekick I dubbed R2-O2 which Liz then improved to O2-D2, but I was free. By Wednesday, I was operating on "room air" which is how the nurses refer to "air."

So imagine my surprise the following Friday night when I suddenly couldn't catch my breath. No insane coughs or blood, just...not enough air. I went to sleep back on the oxygen to see if it was a temporary flare-up of inflammation from the radiation treatments that may perhaps subside. As of six in the morning, the answer was still "no," I can't breathe properly. Back to the ER we went on Saturday, Dec 14th. That was the last time I was outside as I write this from room 791 on Friday, Dec 28th. My combined hospital days from my kidney and brain surgeries plus transfusion stays were about 13 nights. This lung thing is up to 18. [edit: total ends up 32]

From the scans, Ol' Lefty had what doctors call a "complete whiteout" or full collapse of the lung. They scheduled me for a bronchoscopy to get a better look at what exactly was going on and encountered a crazy mass of alien grossness. Unfortunately, the machine they had lacked an ablative or cauterizing capability and these masses were either too elusive to grasp or would bleed when grasped. Neither was good.

Oh, I forgot to mention that a bronchoscopy involves being intubated under general anaesthesia to a ventilator. Fun times! When I came to, I had an insane coughing fit from the irritation until they nebulized lidocaine into my lungs. Unfortunately, that took about 10-15 minutes to get approvals to do and wow, was I sore after that. Just every core muscle ached for days.

I got a day off from both radiation and bronchoscopies while they transferred me to a larger hospital that had the machine they needed. The irritation died down a bit just in time for Brochoscopy #2. This time, a different anaesthesia team tried something other than what had successfully worked the previous time and the team encountered problems keeping me oxygenated and sedated. GREAT. So that one was cut short and I was brought out of it with people around me very on edge and shoving these oxygen masks on me that push the air into your body so forcefully it's actually suffocating. Then they were staring at my low sat numbers and freaking out which caused me more panic and so on went the loop until I pulled the mask off and started dictating my own care. I'd already been through this once and knew what worked last time. I got what I asked for and saturated quickly and without incident. Not a fan of Bronchoscopy Number Two.

Since that resolved nothing, after a day of rest we went at it again in Bronchoscopy Number Three, only back to the previous formula of intubating and anaesthesia. Seemed to work like a charm. The doctor made progress through the physical blockage and got a better idea of what exactly we were up against. The rogue metastasis had infiltrated the bronchus and bled into it, which is what all the blood coughing was from Visit Number One. Now, it appeared, the old clots and mucous had all been sandwiched together into a giant disgusting plug, blocking the airway. Unfortunately, it was a very large blockage and he was only able to make it partway through before deciding he'd hit the limit of what I should endure for one day.

By Bronchoscopy Number Four, the following day, I was an old vet around the Endo clinic. I went under letting them know to hit me with a nebulizer of lidocaine as I come to, then put me on my high-flow canula set to 8mL and watch me saturate in under 2 minutes. It went as planned. The doctor was able to clear the remaining blockage and now my lung was on its own to begin reinflating. Apparently, that's a long process, usually 6-8 weeks until a return to full capacity.

During the time I've been troubleshooting and battling the Wheeze, the doctors- first a local internist in early November, then my oncologist, then the first hospital internist, then the pulmonologist- had successively put me on Prednisone then its IV version, Solu-medrol. For about two months, I've been on corticosteroids to battle this inflammation. My body does not like corticosteroids. In fact, it doesn't like them to the point that I began experiencing Steroid Myopathy, where one's muscles de-tone and shrink. Finally, I'm tapering off these foul things, but I now get to rebound from an 80-year-old man physique with crazy adema cheeks.

BUT I'M FREE. FREE TO FINALLY SEE INTO THE SPIDER-VERSE. That's all I've really wanted this whole time. Okay, I mean, yes, it would've been great to get to go to Minnesota to support my extened family and I'd have loved to not have to give up pages on Avengers and I would have enjoyed getting to spend time with friends and family in SoCal for the holidays and completed my xmas card on time...sure, yes, of course. But also, I want to see that movie. [edit: totally saw it. Loved it.]

There were a lot of great and fantastic things I got to do in the back half of 2018, before this new episode of "Tubes In My Tubes." Once I was feeling more normal, I traveled as much as I could reasonably do and got to spend quality time with some great people. For 2019, I will aim to continue that trend. I spent quite enough time in hospitals, thanks, 2018. Clean slate for next year! Here's to breathing clear and fresh room air!

Merry Christmas from Room 791

Once more, into the clinic

After a bit over two weeks of enjoying freedom, I had a rough weekend with a resurging cough and emerging pain. Ever since the October precautionary cessation of treatment in case of pneumonitis, my cancer had yet to be treated again. By Monday, recognizing the pattern of once again deteriorating condition, we chose to pack a bag and head to Moffitt Cancer Center this time, where I receive the majority of my treatment, before I ended up in dire straits in a local ER. This way, I would have doctors who already knew my situation present. Lucky for us, Moffitt had just begun their own version of an Emergency Room, which I was immediately checked into.

Turns out, I had Obstructive Pneumonia from the repeated closure of my left lung. Couple days on IV antibiotics had me feeling much better. Unfortunately, the constant IV fluids began to seep into my tissues which the staff called "third-spacing." This, in turn, caused my torso to swell and press on my new set of metastatic tumors in my lymph nodes which hurt quite a bit. In fact, this new bunch of lymphatic tumors caused a fair bit of agony for a while, meaning I got the Good Stuff on a regular basis.

After the pneumonia was waning, I got another pair of bronchoscopies at which I am now officially a pro. After those, my lung was pretty clear. The remainder of my two-week stay became about pain management and weaning me off of the high-flow oxygen. Oh, and a couple transfusions. NBD.

Once free of the confines of my third hospital bed, I was able to resume cancer treatment. Hooray! They sent me home with this way huger oxygen machine, capable of 10L output (7L more than O2-D2), a boatload of pain meds and glad tidings of great joy.

Ain't gonna lie; those first couple weeks home were a struggle. However, now, after a month on the outside, my cough is almost gone (finally! after months!). Also, I've managed to purge all that excess fluid that had me swollen like a sated tick, wean off the oxygen machines completely and cut down my pain meds by like 85%-ish? Things all seem to be trending well.

My battles are down to eating enough (and keeping it down), fatigue, and regaining my strength. Doesn't seem so bad, although I'd love food to taste normal again. I miss liking food! Though my official scans are still a few weeks away, I can infer from how much better I'm feeling that my chemo drugs are doing their job. Hopefully, I'll enjoy another period of 90% normalcy like I did during the latter half of 2018. Fingers firmly and metaphorically crossed for 2019!

The Slice Is Right

At first, I didn't write a new blog because I felt terrible. Then I didn't write it because I finally felt good. I just completed a new round of CT/MRI scans and while I haven't yet had a doctor confirm it (test results posted online), all tumors in my lungs, lymph nodes, liver, etc. (that's just the L's!) have all shrunk. Shrank? Shrinked? Shrunken? B-dee, b-dee, they're all smaller now. Significantly so. I'm finally starting to feel like myself again for the first time since December. It's been a long road back, and that's what I'm here to summarize [in a similarly long post, I add while editing]. Turns out avoiding writing this entry made people start checking to be sure I'm still alive, so here goes:

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.

(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.

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.

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 101º. 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!

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.