I never noticed how important the tips of my fingers are until getting chemotherapy. One of the side effects I have been experiencing is called neuropathy - a strange, subtle feeling somewhere in between numbness and soreness in my fingertips and the pads of my feet. I notice it less in my feet, but I will occasionally lose balance for a fraction of a second and know it's there. Foot nerves have more to do with standing upright than you might expect. Most often, I feel the neuropathy in my fingers. It comes and goes, sometimes in one or two fingers and sometimes in my whole hand. It can be triggered by cold things, and I once knocked my thumb against a door causing it to go completely numb for the next thirty minutes. That is one of the weirder things I have experienced so far. Neuropathy is not particularly painful, but it can sometimes have an unpleasant nerve-y feeling. It's mildly cringy, like watching a socially awkward person flirt. Take the pain out of hitting your funny bone, but leave the tingly, numb, nerve throb and you have the closest comparison I can give from my own experience for the genre of sensation neuropathy falls into. But again, it's not terrible.
The thing that I dislike most about any of my side effects is their potential permanence. Neuropathy is one of those things that may go away and may not. That puts me on edge. I have become more aware of how often I use my fingertips, and I don't want neuropathy to interfere with them long-term. Typing activates the nerves in my fingers and feels off. Using a touch screen feels the same, as does picking up small objects. I don't want permanent nerve damage to effect these everyday tasks, or dampen the enjoyment of playing my guitar or catching a ball. Sure, that would be a small price to pay for being cancer free, but it seems like the financial cost of my treatment should be enough. What I really want is to live the life I had before this diagnosis, fingers in tact. My left testicle too while we're at it. In the end I express gratitude more than I complain. I really am unbelievably thankful for the treatment I am receiving. Sometimes it's nice to publically bicker about the small discomforts of chemotherapy. I wordsmith my grievances, put it all in paragraph form and somehow it falls into perspective. Many days like today have little discomfort. Right now I feel some slight neuropathy, a little fatigue, and that's it. The last few days have been the same. So things are good. Maybe next week I'll lose the numbness and be on the road to normal. Spring is almost here, and I'm itching to get on with my life. Not exactly the life I had before, but something pretty close to it. Maybe something a little better.
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Today I was asked if I needed help tearing open a tea bag. Do I really look that helpless when I'm wearing a mask? I was wondering what people think when I walk around masked, tired, and very bald. Now I know it's something akin to, "poor guy!" I didn't mind the comment. I certainly look like a sick person and I'm aware of that. If nothing else it gives me something interesting to write about. I have been facing some severe writer's block this past week.
I don't have a ton to say. I have been uncomfortable this week, but am better now. That may have contributed to the writing apathy. My most recent short injection was Friday. Every other short injection has given me a fever within a day or two. There has been no fever from this one yet so hopefully it's not coming. The unpleasant beginning of cycle two has knocked me off track in terms of exercise. I hope to regain momentum this week. I think today marks the halfway point. 31 days down, 31 to go. There's a 63rd day in there somewhere, but it sounds cleaner to say "31" instead of "31 and a half." I wonder how long after day 63 I have to wait until I feel normal? Every spring I get a nice energy and motivation boost from the weather. I think this year's is going to have something extra. Cycle two has been a bit rougher so far. I find myself bouncing back less between injections, and the effects are compounding more than last time. Water doesn't slide down as smoothly. It has a mildly unpleasant taste, which I combat by mixing it with Gatorade or flavored drops. I feel like I have to force myself to keep sipping throughout the day so I haven't stayed as hydrated. I'm sure that is contributing to the side effects I feel. "Unsettled" is a word I use frequently to describe the state of my body. It's like someone took a whisk and haphazardly stirred a trail from my throat to my intestines. I think that analogy captures the sensation pretty well, but others tell me they have no idea what I'm talking about. So it must not be as good as I think.
I have to be more careful about what foods I eat. Up until the last few days I have been able to eat pretty much whatever I want. Now I have to watch for acidic flavors and other irritants. Yogurt and other creamy foods seem to work the best. They sooth my stomach and act as primers for other food. My overall approach is nibble and sip - drink water constantly and eat small, frequent meals. Can't say it's working great so far, but I'm not bent over a toilet so we'll call that a win. Not going to lie, I'm getting kind of sick of nurses messing up my IVs. My arms have strange lumps all over from where the veins have hardened and a red dot for each needle stick. Some spots are sore. Today was another failed attempt before they got out this crazy vein finding machine. It projected a sci-fi green map on my arm showing all my veins. Apparently it works because the next attempt went smoothly. Maybe I'll ask for it moving forward. It's a pretty cool piece of equipment. We are through the second stretch of long injections! Only one more 5-day, 5-hour-a-day slog before all this is behind me. I'm not quite halfway through the treatment from a calendar perspective, but I am done with more than half of my injections. Nine to go. Hopefully only nine IV sticks as well. More IV trouble today. It took 4 sticks to find a good vein. They tell me I am a "vassal constrictor." If this keeps up I may need a port, which is essentially a surgically placed semi-permanent IV. They kind of freak me out because they're installed in you chest and leave a weird lump. It's a little Tony Stark-esque, minus the glowing blue light. Getting a port would make day-to-day sticks quick and painless, but it would require surgery to place and to remove after my treatment is complete. I would rather not mess with it.
After yesterday's injection of bleomycin, I'm waiting for another bout of chills and fever to come. It happened after each of my last two bleo doses, but those both occurred later in cycle one. My very first bleo injection had no effect, so I may avoid the unpleasantness this early in cycle two. Each cycle is frontloaded with injections pretty heavily, 5 hours each of the first five days, and I would say this period includes some of the weirder chemo sensations. Most of it is not bad, the more annoying stuff comes in week two, but it is strange and difficult to describe. I feel pumped full of fluid for one thing. Not a surprise considering I am spending 5 hours a day being - you guessed it - pumped full of fluid. I end each appointment with a "puffy" face. There's some indigestion as well as a general chemical fog that sits in my head and through my torso. I feel out of alignment, with my insides floating in an uneasy equilibrium. Nothing is wrong per se, but it feels like it could be. It's a fragile feeling. I don't like to move around much and my appetite is limited. I don't want to disturb this foreign cocktail as it settles in my body. I continue to receive an outpouring of support: cards, calls, texts, visits, hugs, food, checking-in conversations, and small helpful gestures. It is much appreciated, and sets me up well to maintain a positive attitude through this process. I am a lucky guy. Thank you to everyone interested enough in my story to read these posts. It's nice to know I have an audience, and I enjoy the writing. I am beginning to think about keeping the habit post-cancer. So much for the bald and bearded look. A couple days ago after scrubbing my face in the shower, I looked down at hands covered in tiny hairs. My mustache has thinned the most, down to almost nothing. The rest is quickly disappearing. They told me I might keep the facial hair, but it looks like I'm not so lucky. I guess my whole head will be naked.
Today is the beginning of my second three-week cycle. Back to five-hour injections for a bit. Overall I should know what to expect as far as side effects go. It may get a little worse, but will probably mimic the first round pretty closely. Cycle one is done! And it was honestly not as bad as I expected. It feels good to be through a third of my treatment, and I got some even better news this morning. My hCG, the rising tumor marker that started this whole thing, is down to an undetectable level! The chemotherapy is working! This was not unexpected, but the affirmation provided a nice morale hike. Seeing results is the only thing that helps me more than the support I have been getting from friends and family. A couple weeks ago my cousin sent me a care package. Her two-year-old included his favorite car, "Go" (Lightning McQueen), to help me pass time during my injections. Today I sent him a picture of it driving up my pillow. The last part of cycle one added some different side-effects to the mix, but also included some of the same. I was down and out with another fever Monday, I assume from my Friday bleomycin injection. Anxiety levels were lower this time around because it was similar to the chills, sore throat, etc. I experienced the week prior. I wasn't worried about a trip to the ER this time. Some fatigue has hit me in the last week or so. This wasn't noticeable early on in the cycle, but now I'm perpetually ready for a nap. The morning's bloodwork confirmed I am slightly anemic, which is probably the source of my fatigue and the fact that I can't seem to get warm. My hands are cold to the touch most of the day, and that nice built-in insulation on my head is gone for the time being. I have a new collection of hats to help. My ears ring from time to time, and I may be having slight hearing loss but it's hard to say for sure. I have also noticed an intermittent loss of some grip strength. Today I have a slight tremor in my right arm when I hold things tightly. I assume of course that this is related to the treatment, specifically the neuropathy that comes from cisplatin settling in my nerve endings. I am a little concerned that it will be permanent. I would much rather have tingling or numbness in my fingers, or even a tremor on the left side, over any kind of loss of coordination in my right hand. I will be frustrated with any physical limitations that come out of all this. Prior to the first injection of each cycle, my oncologist orders a bunch of bloodwork measuring the function of my immune system, kidneys, and liver in order to ensure the chemotherapy regiment is not harming my body more than it needs to. This morning when I went in to have my blood drawn, the lady offered to place my infusion IV and draw blood from it instead of a needle in my arm to avoid multiple "sticks." It sounded good to me, I'm not a fan of the blood draw/IV placement process. I regretted my decision. She attempted to place the IV, but it immediately started hurting and popped out of place, squirting some blood before she covered it with gauze. I almost passed out. After the incident she informed me she usually was not comfortable placing IVs when they have to be in for more than three hours. I wish she would have said so up front. I don't mean to call anyone out here, but I have really grown a new appreciation for knowledge and skill in this process. I once had a phlebotomist who confidently executed a blood draw in about twenty seconds. It was quick, painless, and incredibly smooth, almost athletic really. In all honesty I will take skill over outward kindness in a lot of scenarios. Clearly both would be ideal, and kindness definitely has an important place in my care, but I've realized that skill is my clear number one expectation of my caregivers. I am in good spirits. I feel fine, and, equipped with evidence that my treatment is working, the next six weeks are not as intimidating as they once were. So I start my second trip around the chemo track - bald, beardless, and probably bruised from the IV mishap, but with less cancer in my body and a little more optimism about road ahead. Today's the day. I woke up with hair all over my pillow. The last couple days my scalp has been very tender, almost like someone had been tugging on my hair over and over. I had to be gentle when I washed and dried it, otherwise I would wince. I can tell the hair is all dead now because today it doesn't hurt anymore. Every time I so much as touch my head a few strands fall out. I had to air dry after my shower, and I think if I would have rubbed it with a towel most of the hair would be gone. The thinning has become very noticeable. So we are setting up to shave it. I will post pictures after it's all said and done. Wish me luck!
A little over two years ago I decided it was time to get serious about my health and fitness. I was in between jobs and coming off a breakup with time and motivation to spare. A friend's recommendation of the podcast "Serial" had me hooked, so I made a rule for myself that I was only allowed to listen when at the gym or on my way there. This added motivation helped start a habit, and the results have been transformational. The routine is intact. I am more confident. I'm markedly stronger, faster, and more coordinated. I eat better. And I feel more accomplished. I wouldn't say I ever led a sedentary lifestyle, but I have never been a physically impressive person. I've always been somewhat scrawny, I've underperformed athletically, and before starting this journey I can't say I ever pushed myself very far from a fitness standpoint. Now I run more races, climb more mountains, play more pickup games, and generally have more fun being active. I am proud of the progress I have made.
After my diagnosis, once the bigger fear of death lost its sting a little, I became afraid of the impacts this disease and subsequent treatments would have on my lifestyle. Currently, most of my fears rest here. I'm afraid these treatments will impact my body to an extent that makes me unable to be physically active. Afraid the cardiac risks will impact my ability to push myself athletically when I am older. Afraid that the lung damage I will sustain from the bleomycin will make it difficult to hike at elevation. Afraid that I'll lose all my strength and performance during months of chemotherapy, or during a restrictive rest period after an additional surgery. Afraid the cancer comes back, or the injections cause a new cancer, and I have to waste even more time stuck in an infusion chair with an IV in my arm, completely destroying any routine I've built. Afraid that I'm given an expiration date, and my body is too frail to live out my remaining time the way I want to. Chemotherapy is poison. It kills cancer cells but also kills a lot of other things. One of the drugs in my regiment, cisplatin, requires an hour-long injection of fluids before and after so it doesn't shut down my kidneys. Another, etoposide, can't be injected through normal IV tubing because it will "eat" through it. Those drugs are going in my body. They will have lasting impacts. I know what those impacts are but only in "risks" and percentages. I don't actually understand what "an increased risk of early heart disease" means for me on a day-to-day basis. I don't know how it feels or how it changes what I can and can't do. But it's real. And I know I never get to be as healthy as I would have been without this treatment. That makes me want to drive my fist through a wall. So damn right I'm going to exercise through chemo. Early on, my roommate told me about an elite runner who trained through her chemotherapy treatments. I don't remember who it was, but the knowledge of her perseverance lit a small spark. After my doctor encouraged me to live as normally as possible during the injections I set a goal for myself. I would try to exercise twice a week through treatment. I am happy to say that I'm on pace with that number so far and hoping to increase the frequency in cycle two. My workouts aren't as rigorous as before, I lose my breath and stamina much quicker now. I do a run, a light lift, or some short interval training. I realize that I am lucky to be able to sustain this level of activity. It seems the treatment has had a relatively mild impact on my body so far. Not everyone responds this way, and I was unsure exactly how much I would be able to push myself. But I was dealt good cards, so I intend to play them as well as I can. My goal is to lose as little progress as possible and to minimize the impacts of these drugs on my fitness. I don't know how much real control I have over that, but at least I feel like I have some. It is also a way to channel the waves of anger I experience. Exercise has always been therapeutic for my mind. Holding myself to this standard has helped me mitigate some fear and stay positive about the situation. It is one of several factors, alongside my support system and other coping strategies like this blog, that keep me out of a victim loop. I am still terrified of living the rest of my life in and out of hospitals, going through chemotherapy, radiation, surgeries, and all the other burdens that come with treatable, advanced-stage cancers. Thankfully the specifics of my diagnosis make it unlikely that I will follow that path. Some of my fears are illogical, but it takes intention to keep them from growing unwieldy. Some of my fears are very logical. Those are tricky, so I am taking action steps to keep my mind at ease and stay focused on what I can control. Two years ago I learned to take control of my fitness. I can't surrender that control now. It's too important. My hair is falling out more quickly. I'm shedding. Every time I stand up and look back at the place I was sitting there is a small pile of hair. I think the bald is coming sooner rather than later, but not yet. I am still losing a few hairs at a time rather than chunks. My nurse's recommendation was to keep it around until I wake up with a pile of hair on my pillow.
I had another injection today. It was the same injection I had last Friday, so I was nervous I might have another rough evening. So far I don't feel great, but it is much more subtle. And there is no fever. By this time last week I was trying to nap in a feverish stupor while my rising 100.1 degree temperature caused my mind to race through emergency room possibilities. Tonight I'm watching the Olympic opening ceremonies with a pizza. Seems like a win to me. It's happening. Today I noticed that I can consistently come away with one or two hairs if I tug lightly on the top of my head. I have a bad habit of playing with my mustache when my facial hair is grown out, and I accidently pulled a small chunk out of the left side. So I shaved. I think I have a few days to go before my head hair starts coming out in chunks. When that happens I will make an event out of shaving it. The hair loss doesn't bother me much. Being bald might make me self-conscious, but the process of the hair falling out doesn't phase me. I make some people uncomfortable when I say, "watch this" and start to tug on my hair. I think the weirdest thing about this process is the fact that my hair might come back differently. It could be finer. It could be curly. It might event grow back a different color. That would be strange. My oncologist claims it will come back stronger. I want to believe him, but I am mentally prepared for a permanent bald spot. There has always been a chance of that anyway.
The last few days have been pretty uneventful. Friday's injection hit me like a truck, but I bounced back by Saturday afternoon and have felt fine since aside from some nausea last night. It didn't last long. I keep thinking I'm going to wake up feeling terrible, or that one of the brief waves of sick will stick around. So far I have bounced back each time. I am thankful for that. Below is my official before picture. Stay tuned for bald Tim in the coming week! |