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.
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!
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| 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!
