brew trek

beer & chemo don’t mix & other tid bits from my year in hell

You never truly know how strong you are until you have to deal with adversity, and not just any old adversity, but Adversity with a capital A. Misfortune so bad that it makes you question your own existence when you wake up in the morning; a big, ugly creature that chews you up and spits out your pieces in such disarray that you spend the entire day putting yourself back together. Thus has been my life with cancer since February of 2015.

I’ve been fairly lucky when it came to my health over the years, especially as an adult. I’ve always healed fast no matter what the injury or ailment; cuts and scrapes would disappear quicker than on my friends and family, my colds and flu done and over with long before what most people endured. Over the span of 37 years, since my teens, I had only been to the ER once, broken only one bone, only been to a doctor once or twice, and had never been hospitalized. Prior to that, as a child, I had had a couple of hospital stays, and a few health problems, but nothing life threatening except for an infection that got out of hand when I was around six. Needless to say, as an adult, I had led a charmed life health wise. Which is why when my body started to tell me things weren’t right, I pretty much ignored it, thinking that it was something my body would cope with like it always did in the past. How wrong I was. I’m writing this post in such detail to serve as a cautionary tale, if you feel anything out of the ordinary, or have symptoms that won’t go away, see a doctor.

Starting around the Summer of 2014, I started getting pains in my ribs, like I had pulled a muscle or tendon, which I had already done some ten years prior. That previous episode was the only ER visit I had made as an adult, and it did turn out to be what I thought it was, eventually healing after a few weeks of excruciating pain. I saw a doctor after that incident (the first time in over 15 years), got checked out and promptly forgot about it. Jump forward nine years to when my ribs hurt again, and my hips, and my back, and my feet.

In my late teens, I would get aches and pains from injuries suffered from stupidity while skiing, skateboarding, and general drunken revelry, whenever a front moved through – the more rapid the weather change, the greater the pain I would get. But it was something I’d learned to live with over the years, usually getting the kinks out and lessening the ache with exercise.

Things came to a head six months later, after putting up with sharp pains, aches and sheer agony. Did I mention I’ve always had a high pain threshold? February came and the Wife kept bugging me to go see a doctor, mainly about my ribs which I still thought was an injury acquired doing Summer yard work. So I finally relented and found an in-network general practitioner and made an appointment. I never made it.

A couple of days after I scheduled the doctor’s visit, I was out shoveling snow off the walk and got knackered, more than I had ever experienced. I can count on one hand the number of times I hadn’t shoveled the walk after it snowed in the 21 years prior to that day; heavy, light, blizzards, flurries, wet, dry, I had shoveled it all and never felt like I did that morning in 2014. I had also completely lost my appetite during the prior two weeks, nothing sounded good, and it was a chore just eating at all. So it was with minimal protest that I called my father to drive me to the ER after the Wife insisted I do so.

Tests and scans were done at the hospital after I checked in at the ER, and luckily the Wife had made it there when the results came through: I was diagnosed with Stage 3 Multiple Myeloma, a cancer of the blood and bone marrow that slowly eats away at bone mass until treated. It is somewhat rare when compared with other forms of cancer and has no cure, but it is treatable. I currently have a life expectancy of three to ten years.

The pain I had been suffering was from bone lesions and fractures throughout my body, most notably in my ribs, back, and pelvis. The fatigue and loss of appetite, while also symptoms of the cancer, were mainly the result of near toxic levels of calcium in my bloodstream from the bone loss.

I can’t say I felt anything when the doctors told me the diagnosis, I just felt numb as they wheeled my gurney from the ER to a room upstairs for an extended stay. In a way I almost felt relief for getting an answer to what was going on with me, and that some of my symptoms could be treated. I thought at the time that after some treatment my life could go back to normal and that I would just have to live with having cancer. Well, more on the reality of that outlook later.

I ended up staying three to four days getting my calcium levels back to normal, meeting my oncologist, loading up on pain pills, and getting a bone biopsy as a parting gift. Since then, it’s been a non-stop parade of tests, drugs, hospital visits, and coming to terms with how my life will be for the foreseeable future.

Other than my ribs, the most serious bone situation was with my vertebrae, two were fractured, and one had almost completely collapsed, taking nearly 2″ off my height. Because of that, as well as the situation with every single bone in my body, I was instructed not to lift anything greater than 10-12 pounds; it’s since been raised to 35, but that really isn’t much, trust me. The collapsed vertebra was remedied with a procedure called kyphoplasty in December of ’15, although my back still remains a major source of daily pain.

By far, the most traumatic episode of the past year and a half was the stem cell transplant last July. The thinking is that once you eradicate the source of my particular flavor of cancer, the marrow, with high dose chemotherapy you can then rebuild it with stem cells harvested a week or two before. Since the marrow is the major source of your immune system, getting rid of it puts your body at risk for any number of factors. As such, I was hospitalized for pretty much the entire month, kept in a positive pressure room to keep out the nastys.

The title I selected for this post is a little misleading, there are some doses of chemo that you can drink on, just not heavily, and not without consequences the next day if you come anywhere close to overdoing it. Those doses were what I was on from the time I was diagnosed until shortly before the transplant; you feel shitty, but it’s a shittiness you can live with. What you get before the transplant elevates the worst kind of misery you can imagine. Diarrhea, vomiting, weakness, depression, and hair loss become your companions every second of the day.

Even after I was allowed home, the fun continued every day. For months on end I was afflicted with an insidious case of nausea, pill after proscribed pill doing nothing to alleviate the living hell. I didn’t recognize the bald headed face that stared back at me in the mirror, much less care what future was in store for it during that period. But things did get better. Slowly.

After awhile I actually liked what I was eating and drinking, every taste and smell could set off queasiness before that. Eventually I could tolerate the smell of cleansers; at the height of my nausea in the hospital, I would have to endure a full top to bottom cleaning that burned itself into my olfactory lobes, making what is a lifelong association. And speaking of smell association, I can now, never, eat, or be near, corn.

There is something about the interaction of the preservative and the stem cells themselves that smells like corn. We had been warned beforehand that this would be the case, and that some people would be affected by this and some not. Well I turned out to be in the positive rather than the negative. You don’t so much as smell it when you have your own transplant, but you do later on when others in the ward get theirs. Combining with the nausea at the height of its attack, it permanently ingrained itself into me.

Day after day would go by with the only thing that would sound appetizing would be Fruit Loops, which would be scoured from nearby wards by my superhuman nurses.

But eventually that all passed. Sometime around September I finally felt up to a beer, but even then they would be few and far between. The day before Halloween we got the news every cancer patient waits for: I was in remission. As I started to get a light fuzz on my scalp, I also got the energy to take care of some business with Beerporium, even adding a Participating Brewery or two. By the time February rolled around, along with the elation of my beloved Broncos winning the Superbowl, things were looking up. My hair was filling in with a surprise; after a lifetime of having fairly straight hair, my new growth was curly and wavy. But all came crashing down in early March.

As I mentioned earlier, I have a high threshold for pain, but adversely, a low one for nausea; it incapacitates me like nothing else. As Winter changed to Spring, I lost my appetite, could barely drag myself out of bed, felt queasy all day long, had my skin turn drier than I’ve ever had it in my life, and had one of my lymph nodes swell alarmingly large. Top all of this off with weird levels for my thyroid and I was back to some dark days.

Luckily, after many rounds of tests, it was discovered that the maintenance chemotherapy I was on was causing all this torment. My oncologist had started me on low doses of a chemo back in February, a drug I had taken the prior year without any problems. Such is the state of my new immune system that I reacted badly this time around. A week and a half after I stopped taking the drug I began to feel 100 percent better, with all of the symptoms clearing up one by one.

And now we have reached today. I’m slowly starting to get my life back together. Beginning to write new blog posts, starting another blog called Alterpast, and planning what I can do to maybe get the business back on track.

I am both thankful to be alive, yet very uncertain to how the Wife and I are going to survive. If it wasn’t for the Wife, I would have given up long ago; I thank my lucky stars each and every day that I have her. She tirelessly keeps us going, being the only income we now have (due to various reasons, I am unable to draw disability). She almost single-handedly organized a beer festival benefit last May, and continues to maneuver through the intricacies of our health insurance.

I also have to thank our local craft breweries for their support, many of which donated both beer and merchandise for the benefit. The money raised has helped us keep our heads above water, at least for the past year.

So I start this new phase of my life. I take it one day at a time. Right now I really don’t feel like writing blog posts about breweries; my creative energies for that aspect of my life are taking a different turn right now. I’ve always thought that the visual was just as important as the written in my posts, but now I’ll be shifting the focus, at least temporarily, to the photographic. I hope to bring you video posts in the future, letting the written word list the details. Right now my plan is to have something about our trip to Kauai and its two breweries produced in the next two months.

I hope you’ll come along to see my new direction. I won’t completely give up written posts, it just may be awhile.  In the meantime, if you still enjoy my writing, join me over on Alterpast.

This entry was published on July 12, 2016 at 3:24 pm. It’s filed under Beer, Benefit and tagged , , , , . Bookmark the permalink. Follow any comments here with the RSS feed for this post.

One thought on “beer & chemo don’t mix & other tid bits from my year in hell

  1. Pingback: r.i.p. tony | brew trek

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