Here it is. The pilot run. I have hesitated at the idea of blogging as I am, in general, opposed to the concept. With few exceptions that actually border on fiction, I find personal blogs to be ego-fueled nonsense, much the same as the YouTube videos people post of themselves.
I confess this blog is no less an example of ego-fueled nonsense, but I will try my best to refrain from pointing out my own greatness. Please disregard my URL. And I’d also like to state future entries will not all be this…heavy. This one is clearing out some crap.
At any rate, this first entry is to get everyone up to speed. I have been remiss in posting updates on Facebook, since I loathe Facebook and still find myself checking it every hour or so out of boredom. I can no longer recall what I did before smartphones, but I suspect it involved other humans in the same room. But I digress, that is a discussion for another time.
This is a public blog, but I’ll begin sharing it amongst my Facebook friends, as they might actually care what I have to say. In light of that, most of you are aware to some degree of the events of the last four years of my life. But here’s the rundown from 2012 to 2015:
March 2012, I was sitting at this very computer (yes, it’s quite obsolete), at this desk (though in a different room) idly running in circles and chatting with my online friends while playing Star Wars: The Old Republic. I was about at the end of my rope with the game, but honestly my group and I were just killing time until GuildWars 2 came out, which we played to kill time until Final Fantasy XIV didn’t suck anymore. I leaned back in my chair, and stretched my left arm across the right side of my neck. I stopped as I noticed what appeared to be a tennis-ball-sized knot right above my clavicle.
WHAT THE FUCKING FUCK?! I had just shaved the night before! How could I have missed something like this?
I checked the other side for consistency, as if this might be some unusual but normal part of my anatomy. A smaller lump above my left clavicle, about the size of a golf ball. In a panic, I very quickly consulted Google.
Never consult Google for medical advice. Terrible bedside manner. A search thread of “swollen lymph nodes above collarbone” immediately returned a result of “Hodgkin lymphoma.”
Doing my best to not take the internet seriously, I paced the house while I waited for my wife to get home. When she walked in the door, she could tell I was wound up. I made her feel the knot in my neck, asked her what we should do, and her suggestion was the ER. I talked her down to a local urgent care clinic, which was probably not that great of an idea in hindsight.
At the clinic, a young PA-C came in to examine me. After palpating the extra head growing out of my collarbone, all he could say was, “Dude….whoa.”
Yeah, Google won the bedside manner contest that day.
However, he made no bones about the fact that, while this could be infection, it was far more likely they lumps were tumors. He referred me to the internal medicine clinic at the local hospital.
Next came a battery of blood tests to eliminate other possibilities. A CT scan showed a number of other growths throughout my upper chest. I was then referred to radiology for a core-needle biopsy of the large tumor on the right. This was a bit of a fiasco as the PA to whom I was referred at the internal medicine clinic apparently ordered a thyroid biopsy (whoops). We headed that off when I showed the radiologist the monster on my neck. However, the results proved inconclusive as they showed only necrotic tissue since the growth had outgrown its blood supply.
I was then referred to a surgeon to have an excision performed. This was my first experience with surgery and general anesthesia. Let me tell you, the stuff they give you before they wheel you back to the OR is freakin’ awesome.
The surgery went well (obviously), but it took some time to get back results. Local pathology couldn’t agree on what they saw, and my samples were sent to the University of Utah. On April 10 2012, I was finally given a diagnosis: nodular sclerosis Hodgkin’s lymphoma. God dammit, Google.
It was my surgeon who called me with the results, for which I was grateful. He’s a kind man, with a good bedside manner. He encouraged me that this cancer would not be a death sentence. Cure rates run above 80%. Most patients tolerate treatment well, and since I was asymptomatic, the treatment would be harder on me than the disease. He felt it didn’t look bad at all for me.. I took his words to heart, but the news was hard to hear all the same.
I had cancer. I would need chemotherapy. I would feel sick. My hair would fall out.
I had cancer.
He sent me along to the local cancer center, in the hospital, where I would meet the hematologist/medical oncologist who would put in a very respectable amount of effort to keep me alive. I have grown to like and respect this woman greatly, and am happy to be her patient, even when she growls at me for doing stupid crap. Between her and my wife Lacy, I actually can’t get away with anything.
The doc was also very positive after seeing the results of my PET-CT, and on May 21 2012, I started first line treatment: ABVD chemotherapy. Most chemo regimen names are in odd acronyms or combined words to make them easy to remember; in this case ABVD stands for adriamycin, bleomycin, vinblastine, and dacarbazine. At the orientation class I was warned my hair, which was past my shoulder blades at the time, would fall out a couple weeks after my first treatment. I might feel nauseous, but there was medicine for that that worked very well. I might feel tired. But a big deal was not made of it. It seemed cancer treatment was not as nasty as the Lifetime movies would have us believe.
And it sort of wasn’t. For a day or two after treatment, I would feel a bit urky or tired. But it was months before it ground me down. Months before my hair fell out, much to the surprise of all the oncology nurses in the chemo suite. In all honesty, it was really rather uneventful. I kept working. I kept going on motorcycle rides. I did all the things I liked to do. I never really felt like a cancer patient. And best of all, it seemed the treatment was working. The tumors seemed to be melting away. I became hopeful. Stupid man.
But…”nothing gold,” as the poem goes. In November 2012, I noticed by accident one day the knots on the right side of my neck seemed to have gotten bigger. Again dread gripped me. Could it be? Could the treatment have stopped working? We hadn’t discussed that possibility at all. Were then even other treatments? Would I die?
I saw the doctor a couple days later. She was hesitant to discontinue ABVD before the sixth and final cycle she’d planned. But she quickly set in motion a consult with a stem-cell transplant program at the Boise branch of the hospital. As I finished the final cycle of therapy, I learned my insurance would not cover a transplants at the Boise hospital.
Well, it turns out that’s because my insurance requires transplant patients (besides kidney and cornea) to be sent to what they call a “center of excellence.” In my case, this would be the Mayo Clinic in Phoenix, Arizona. And not only do they cover 100% of transplant-related expenses, they also pay for travel, lodging, and issue a per diem for expenses.
I guess that’s acceptable.
In December, Lacy and I traveled to Phoenix to meet my transplant hematologist for the first time. She was a pleasant lady, and listened to my concerns, and explained the process of an autologous stem cell transplant to me very carefully. She didn’t sugar-coat anything; while this was my best chance for cure, it could still be dangerous. The conditioning treatment would eradicate my existing immune system, leaving my defenseless against infection. I would be brought in and my own stem cells would be harvested from my blood via a process called apheresis, which is a little like dialysis. I would receive a “mop-up” regimen to reduce or eliminate the tumors I had. She made certain to explain that I could not rely on this regimen for curative potential. Once the cancer was acceptably controlled, I would be sent to the 4th floor of the hospital for conditioning treatment and transplant. I would likely be home in a couple months, but the possibility existed it could be as long as 4 1/2 or 5 months. I was not put at ease by this news, but I was being assured by two oncologists now that this was my best hope for cure. And I wanted to be cured.
I went home and started the mop-up treatment. It was called ICE (ifosfamide, carboplatin, and etoposide). Each treatment took three damn days, two of which were spent as an inpatient while the ifosfamide ran its 24-hour drip. The carboplatin knocked out my hair–which had just grown back–in about a week. The whole process generally left me rather exhausted, but I soldiered on.
In February 2013, I returned to Phoenix for apheresis. We were there a couple weeks while I was pumped full of stuff to stimulate bone marrow growth. They stuck a venous catheter in my neck…that was interesting. A friend got me the hookup on a motorcycle trailer, and we towed my Cross Roads to Arizona to enjoy what was some serious off-season riding for us Idaho folks. Then it was back north for some more ICE.
Phoenix again in late March, this time for the serious business. One year after my diagnosis, I was admitted to the hospital for my autologous bone marrow transplant. It would be a week of high-dose chemotherapy. I barely remember that week. There were three drugs, but I only remember undiluted etoposide and carmustine. The carmustine flat fucked me up. I had fevers, chills, uncontrollable body-wide tremors, nausea, vomiting…it was hard. I was sick. I was trapped in a little room that had a window looking into the hospital foyer; I couldn’t even see outside. I couldn’t see the sun. I was absolutely miserable, and for the first time I could feel my will eroding. I was hating, really hating, every single minute.
But once I got past the conditioning, things calmed down. A room that looked east across north Phoenix became available, and I was moved. The effects of the chemo dissipated. I was monitored closely as my blood counts plummeted; when they bottomed out, I’d be infused with my previously harvested stem cells. Mostly I was bored. I read. I watched crappy cable. I spent some time perusing my favorite internet forums. On Day 10 (post-transplant), I was given my stem cell infusion. Really an unremarkable process. The most interesting thing was the minor allergic reaction I had to the preservative they mixed in, which was just an itchy throat. Makes your breath smell like creamed corn though.
10 days later, I was bounced out. I recovered quickly, engraftment of my stem cells went very nicely, and the only complication was a failed root canal that gave me a sinus infection. Which gave me stroke face and knot under my cheekbone and hurt like hell, but otherwise didn’t cause any serious issues. I was required to stick around in Phoenix for a few more weeks so they could make sure I didn’t die (which I didn’t), but we came home on May 25 2013, the day before our 6th wedding anniversary. I was relieved we didn’t spend it in a hospital room.
We did spend our anniversary cleaning gray water out of the basement from a broken sewer line, but that’s also a story for another time.
Of course, the downside is the procedure didn’t take. I relapsed even before we’d left Phoenix. It was a few months before I restarted treatment as my body was unable to tolerate therapy for a while. Again, the disappoint was hard…but not as hard. It was starting to look like this was how it would be…and I was learning to accept that. Lacy and I made a good run of the summer, with motorcycle trips to the Clearwater National Forest and the Oregon coast, and in August I started a biologic treatment called brentuximab.
Biologics are used for all sorts of stuff: cancer, psoriasis, rheumatoid arthritis, immune dysfunctions…they’re damn near a miracle drug. They’re actually proteins created from the DNA of animals and humans, designed to cause targeted immune responses. Brentuximab worked pretty well…for a while. It greatly reduced the bulk of my disease for a couple months, but when the cancer broke though, it was pissed.
In November (again), I was restaged with advancement of cancer to my liver and right lung. Had a liver biopsy (positive). Returned to consult my doc at the Mayo, who advised an allogeneic stem cell transplant. This process is similar to the autologous transplant except they use a donor’s cells instead of my own. Risks were higher, recovery longer, but it was the big gun. I wasn’t afraid of the treatment or the risk…I just didn’t want to spend another summer in Phoenix, away from my home and friends and cats. I didn’t want to spend weeks in a hospital room watching shit cable and eating bland food from the low-bacteria menu. This time it was a quality-of-life question, not a fear-of-death question. They wouldn’t even let me hook up my PlayStation in the hospital room. That’s rough.
But I started another mop-up treatment, called GVD, in January 2014. This regimen barely bothered me at all. I missed very little work over the next few months. Snuck in decent motorcycle rides.Visited my grandma in San Diego, who I had not seen in 25 years. Then in late April, it was back to the Mayo.
The conditioning treatment this time wasn’t as hard initially. It was the longer-term side-effects that left me suffering. One drug covered me in an itchy rash. Another destroyed the mucosal lining in my throat, leaving me almost completely unable to swallow solid food. Even liquids hurt. I spent a week wacked out on oxycodone for the pain…apparently I watched but don’t remember a lot of American Pickers. This time I had a triple-lumen catheter stuck in my chest, which would kink and set off the IV pump if I tried to lay on my right side. My hair fell out…again. Once more I was hating every single minute.
But again, I recovered. I even got out a few days early, again proving I can shake off almost anything. Sadly, I still had to spend the entire summer in Phoenix. I was not released to come home until the end of August, after Day 100 post-transplant. Happily, it was confirmed I had achieved remission with a negative PET-CT just days before. Relief washed over me. Lacy cried. I cried. The NP who came to tell me stood there awkwardly. We celebrated as best we could 800 miles from home, hanging out with my wayward sister Bonnie.
After my release, the primary concerns for my health were infection and graft-versus-host disease. I was on a whole mess of pills as prophylactic treatment for the both of them. GVHD is tricky business…my donor immune system was an 8/10 match, which meant I was at higher risk as my bone marrow engraftment progressed. You want a little bit…you want that foreign immune system to attack the cancer. But you don’t want it to attack your organs, your skin, or your eyes. I was pretty lucky: my skin got a little dry, what hair I could grow looked like hell, my mouth was a little dry. Otherwise, I did very well.
It was not to last. In Janurary 2015 my PET-CT at the Mayo revealed the cancer had returned. Not only that, it had spread to my liver again, and all through my chest and abdomen. I had shaken off the disappointment of the previous failures, but this…this was too much. To have those six months, to spend all that time building hope and thinking of the future for the first time in 2 years, and to see it slip away. I broke. My doc was honest; there weren’t many options left for me. Palliative treatment was one, which basically would just keep me alive with the highest quality of living possible for as long as possible. But there was also one last hope for cure: a donor lymphocyte infusion.
It’s not entirely uncommon for a stem-cell transplant to fail, especially when the donor is not a perfect match and the recipient has a particularly resilient disease. They keep active lymphocytes from the donor’s blood for just such a situation and use these to jumpstart an immune response in the patient. It comes with a high risk of GVHD, a life-threatening risk. I didn’t know if I could risk my life again. I didn’t know if I could risk what little remained of my quality of life. Nothing had worked, and I was tired of losing. Lacy and I returned to Idaho…I got stupid drunk on scotch with my friend Chane and she powered a bottle of wine with his wife Kacie.
It took me months to decide how to proceed. I started GVD chemo again, which still allowed me to function more or less normally. My doc at home urged me to go ahead with the DLI. My doc at the Mayo did the same. I was afraid, not of dying, but of risking what I had left for nothing. So much time had been thrown away already. I don’t regret it…if I hadn’t done the allograf it’s possible I wouldn’t be here typing this now. Indecision gripped me until I was forced to chose.
I chose the DLI, got the infusion in late May 2015, and have finally found a decision to regret. GVHD messed me up something fierce. It took a few weeks to set in; at first I thought I was just sick. Countless blood draws and cultures, a urinalysis and even a sputum sample turned up no sign of infection. Then my liver function started to get wonky. Then my eyes dried out…and my mouth. Badly. I could barely see, every bite of food that wasn’t liquid already required a drink to swallow. Recognizing the symptons after all the negative tests, the NP who works with my doc at home put me on prednisone, a corticosteroid. It didn’t help much. A week later I went to Phoenix for a follow-up.
I had a new doctor there…my old one had resigned her position. The new one…he’s a bit more…clinical. I was sitting in the exam room when we walked by and saw me. He poked his head in the door and said, “You need to be admitted to the hospital now.”
Lacy and I sat there in shock. He walked on. We looked at his nurse, who was in the room…she looked just as confused. A bit later, the doc came back and reported that my liver function had spun wildly out of control. We were not at all prepared for an extended stay, but he said if we tried to go home, I’d die.
No one had told me I was going to die at any point until that day. That was a punch in the stomach. I went back into the hospital that very afternoon.
I only spent 10 days there this time. High-dose steroids, some specific chemo infusions, a few other drugs and things were under control. We came home, and the steroids had burned the muscle off me. I lost 30 pounds between May and August. Not the way I’d recommend to lose weight. I was left weak, deconditioned. The basement stairs could now beat me like they owned me. It took a few weeks before I was strong enough to go back to work. I also had to wait to get off daily infusions of antifungal medication, and maybe not need blood draws three times a week.
The steroids also made me a raging lunatic. I probably could’ve been diagnosed as bipolar at one point. I started Zoloft as a mood stabilizer so I’d quit freaking out about breaking the yolks in over-easy eggs, or yelling at my wife about stupid shit. It worked, thankfully. I knew I was out of control, and was relieved when my doc offered a solution. In addition to the happy-fun-time mood swings, I became quite insulin resistant, a result of steroid-induced diabetes. I had to go low-carb for a while, did insulin. Really wasn’t too bad, but inconvenient. I had to carefully gauge how badly I wanted a baked potato, or pasta, or pie, or a quart of ice cream.
I returned to the Mayo in October and a positive PET-CT showed the cancer had survived the DLI. I wasn’t surprised. I’d had little hope that a cure was still in my future with conventional treatments. My doc reduced my steroid dose in hopes to get the immune response I wanted.
Well, not only did we not get the immune response, steroid withdrawal wailed on me hard. Then my eyes started to dry out again. I hurt everywhere. I was exhausted. By the end of the month, I had to leave work again. My doc at home quickly decided this wasn’t the appropriate course of action. She appealed to my insurance company to get me approved for a daily oral chemotherapy called Revlimid, which is not actually FDA-approved for Hodgkin’s. She had presented my case anonymously at an oncology conference to some leaders in the field, and that was their recommendation.
And it’s working. It’s not curative. It’s palliative. It buys time. I want all the time I can get. Let’s be honest: the truth is I’m not going to get better.
My body is worn out. I can’t lift 50 pounds over my head without risking ending up like the “MISTAH! MISTAH!” lady from Happy Gilmore. I can’t stand on my feet all day. I hate to say it, but I am physically unable to perform the job I have done all my adult life. My hands shake terribly sometimes, so badly my writing looks like a palsied old man’s.
In addition to the physical issues, I have a little of what those of us in the know call “chemo-brain.” I have trouble remembering things sometimes, even things from before I had cancer. I’ll forget what I’m doing or where I’m going. In general, I don’t feel as sharp as I used to. That’s really annoying, since I’ve spent much of my life feeling like the smartest person in the room. Likely because I’m an egomaniacal ass, but nonetheless…
And now I’m faced with a very difficult decision: do I try to go back to my old job? Soon they’ll be able to replace me, though my manager has put it off before….however, his hand may be forced. Do I return to work in a different position in the company? Can I afford a loss of pay? Can I afford to stop working and collect disability? That’s actually a number of things to consider, all of them so important I freeze when I think about them. I have no idea what to do next, and that makes me feel even worse than the cancer treatment.
For the last four years I’ve put down my head and trudged though all the shit. But now I’ve hit a wall. It’s hard to plan your future when you don’t know how much future you have. My irrational fear of being poor drives me to return to work, but I know my body will not comply and my will may struggle beneath the stress of my position.
At this exact moment, I am lost, and that is an alien feeling indeed.
I don’t tell this story in hope of any outpouring of compassion or sympathy. This is not a pity party. This is to get those close to me in the know, because I have been selfish with much of this information. I don’t need prayers or “I’m here for yous” or any mushy Hallmark bullshit. This is the way it is. What cannot be changed must be endured.
In the grand scheme of things, I’m okay. I’m fine. I’ve been feeling much better. I have my wife and cats and sometimes even my friends talk to me (you guys really need to up the game). Lacy has helped to hold me up all this time, and I’m so thankful to have her in my life despite the crushing guilt I feel knowing I will leave her a widow long before she should be one.
I fear I will not prevail, but I can promise I will not go quietly.