Today marks one year since the initial “you probably have cancer” from my primary care doc. Last night I found the lump. Today I got it checked. Then surgery, chemo, and the rest. I don’t need this blog anymore. It has served its therapeutic purpose, and I am ready to close this chapter of my life. Thankfully it has been a brief chapter.
My hair came back. It’s a little darker and has more of a wave to it now, but you can’t tell until it grows out. My facial hair has taken a much stranger path. It grew back thicker than it’s ever been, and I enjoyed weeks of the most respectable beard I’ve ever had. But then it started to fall out again. I lost all but a patch under my chin until recently. Now it is growing back in a slow wave starting in a line at the top of my cheeks and gradually spreading downward. If I let it grow out I have the outline of a beard, but the center is missing. Almost like I shaved a portion of each cheek and left the rest. Very odd. Interestingly, my doctor has never seen this before. At this point, I do think it will come back completely. But who knows if it will ever reach its post-chemo peak. I went to Peru in August. Some college friends and I backpacked the Inca Trail for 4 days to Machu Picchu. The trip was a critical point. I had been training a lot, slowly gaining back the confidence in my body that had been shattered during treatment, but I was nervous about going. We hiked with full packs at elevations close to 14,000 ft. The thin air and steep trail made several points very strenuous. It is a hike I wouldn’t have thought twice about before chemo, but I was only a few months out and my strength and endurance were a fraction of what they had been. Completing the hike with no major problems was the turning point in my recovery. It showed me that I can still do everything I could do before cancer. My doctor had been saying this all along, but I needed the personal experience to let it sink in. Today I am in good shape once again. Over the past few months I have run several races, played a lot of sand volleyball, picked up tennis, and returned to my regular gym routine. It will take me a while to get back to where I was last year, but I am certainly getting close. Lingering annoyances remain. I still have slight ringing in my ears. It’s tough to say for sure, but I think I also have some hearing loss. There are several discolored spots on my skin. They may be slowly fading, but that could also be my imagination. The biggest annoyance by far is something called Raynaud’s phenomenon. The veins in my fingers constricted during chemo, and now my hands get cold very quickly and the tips of my fingers turn white and go numb. I didn’t notice until the weather started to turn. It is annoying for sure, but if that’s the worst thing I have to deal with I’ll take it. I am on a surveillance schedule: blood test every 2 months, scans every 4. The emotional roller coaster has gotten less intense, with less crippling anxiety on results days and less of a rush when I hear good news. I still get pretty nervous around 5pm the day of a blood test or scan. My doctor usually calls with results between 5 and 7pm. There have been three instances where I found a small lump somewhere on my body where the cancer is known to spread that wound up being nothing. Sometimes my brain just needs to chill out. I will probably never be completely free of the worry, but it is getting easier. I have immense gratitude for my oncologist. Most importantly for his medical capability, but also for his above and beyond communication. I can email him at 8pm on a Sunday and get a response in under ten minutes. He is very responsive to questions and concerns, and has remained that way throughout my experience. I wish I could recommend him to people. If you eat at an amazing restaurant you can tell everyone to go check it out. Everyone eats, but I don’t know anyone with testicular cancer. If I did I would send them his way in a heartbeat. I am cancer free! All signs point to a cure. Life is pretty good.
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Here's a link to the head shave video we made back when my hair started falling out. Enjoy!
I shaved for the first time today. My facial hair has started to come back in a prepubescent, non-flattering blonde color. Wonderful. There are a few dark hairs poking through so I imagine my beard-growing ability will fully return with time. The hair on my head has not budged, but according to the doc it should start growing soon, which will be a fun game of roulette - apparently my hair color, texture, thickness is a wild card at this point. It could come back very different than it was before. I'm thinking I will prolong the suspense and keep it shaved a bit longer, just so I can try out the bald-beard look for a few days once my facial hair fills out. Life dealt me a rough hand these last few months. Might as well have a little fun with it.
Clearly I have not posted in a while. I meant to, but as my energy has come back I have been spending it on all the things I didn't feel like doing during chemo. My blogging routine fell away in the mix. I'm not sorry about it. Still, I suppose I should write an update. A lot has happened since the end of my treatment, and most of it is good. Two weeks after my little jaunt to the ER I had a set of scans. Waiting on the results was a big deal because my chemo treatment only wiped out certain cancer cells. There is still the potential for teratoma to resurface and put me under the knife once again. But the scans were clear, and each time I get that good-news phone call the probability of recurrence takes a dive. After delivering the news, my oncologist told me to get back to my life and assume I am cured. Cured. It was a good day. I have entered the "surveillance" phase of this journey. Basically, I will have a blood test every two months and a scan every four to six for a year. The frequency will ramp down over time. Two years out the chance of recurrence become almost zero. If nothing shows up for five years, they officially consider me cured. As I mentioned, my oncologist strongly suspects I am cured already. I've decided to believe him. No point in being a pessimist these days. There is too much life to live. In the past month I have watched myself transform into a completely different person. My energy is back. My personality is back. I have a bounce and a zest that I haven't had since before my diagnosis. Chemotherapy became so routine that I didn't realize how much it was sucking out of me. It happened so gradually. Now that I feel (mostly) normal again I can appreciate the transformation. It is so, so good to be back. Not everything has been gravy since the end of treatment, however. I still get hit with periodic anxiety as I impatiently wait for my body to fully recover. Consistent chest discomfort drove me back to my doctor this week. He felt my description warranted some additional testing to look for lung or heart problems. Everything has been clear so far, but the symptoms continue and he may order another test if they don't resolve. It is likely nothing, but the last time I went to the doctor with a minor complaint I was diagnosed with cancer. That is a tough memory to shake. This experience has left a bit of a chip on my shoulder, and I find this to be useful motivation. I feel like my health was taken from me, so I am earning it back. There's a drive that was not there before. It's a slow burn, and I can't say if it will last, but for now it gives me an extra nudge towards exercising a little harder and staying a little more positive in the face of anxiety and fear. I like the surge it gives me. I hope it sticks around. There are a couple drafts of posts I never shared saved on my computer from some of the tougher stretches of chemo. I added to them in spurts, but never quite felt like I was ready to post. I think I will publish part of at least one of them in the near future. I want to be honest and transparent here, and I feel like my hidden drafts played an integral part of the therapeutic outlet this blog has provided for me. So stay tuned for a few more posts in the near future before I close out this chapter of my life. Cheers to life after chemo. Garbage. The last couple days have been total garbage. Yesterday was the worst day by far of the whole chemotherapy process. I had my last injection Monday. It went off without a hitch, and I rang the end-of-treatment bell in infusion to celebrate. It only took a few hours for things to go south. The sore lingering in the back of my throat erupted into a painful ulcer. It got to the point where I couldn't swallow without wincing in pain. It made eating or drinking anything a challenge for two days. The fever came after that. And the headache. I spent essentially all of Tuesday in bed. I couldn't take pain meds for any relief because drugs like ibuprofen and acetaminophen are also fever reducers. During chemotherapy my immune system is significantly compromised, so masking a fever could mean masking the presence of an infection that my body is not equipped to fight off. Some of the chemo medications can cause mild fevers of 99 or 100 degrees on their own, but a body temperature that stays higher than 101 degrees during chemo suggests an infection might be present. That's exactly what happened yesterday evening. My fever climbed above 101 and stayed there.
I was instructed to go to the emergency department so they could run tests and determine the severity of the risk. All told I was there for about four and a half hours. Most of that time was spent waiting: waiting to get a room, waiting to be seen, waiting for results, etc. I felt exposed as an infection risk patient surrounded by people who were clearly infection carriers. They were very busy, with patients bedded in the hallway and no regular rooms available. Out of necessity I was placed in a room for a psychiatric patients meaning it was stripped of everything that someone could potentially use to harm themselves. It was basically a bare room with a bed. Staff had to get all their supplies elsewhere, carrying them past the coughing guy in the hall to get to me. It was a very uncomfortable experience, and I found myself repeating, "will you please shut the door," over and over to try and seal myself off as much as possible. They needed a lot of blood to run a lot of different tests. The first IV stick failed, naturally, but the second one held. I got a liter of fluids and a broad-spectrum antibiotic through the IV as a preemptive measure against possible infection, making my own contribution to the overuse of these miracle drugs (if you don't know about the overuse/misuse of antibiotics in medicine, you should look it up). In the end, all tests came back clear. They couldn't conclusively say there was no infection, but nothing they tested for caused any alarm and my white blood cells counts were high enough that, should an infection be present, my immune system would probably be able to handle it on it's own. I was discharged around 1:30am. So there it is, one last gut punch of chemotherapy before I'm done with it for good, saved until the very end. I feel much better today, and I hope that means I'm through the worst of this. I will know more about next steps after an appointment with my oncologist Friday afternoon. Here's to weathering the storm! Garbage behind me, hopefully less garbage ahead. My ears will not stop ringing and it's driving me insane. I think I noticed it three nights ago for the first time. I have had intermittent ringing throughout chemo, but it always came suddenly and started to fade almost right away, never lasting more than a few minutes. This is different. It isn't a separate sound that comes and goes, it's part of the "static" in my ears, that dull hum that was already there but impossible to notice expect in silence. Now I can hear it even with noise around. It's louder and at a higher frequency than before. Last night I had to download a white noise app on my phone because I couldn't sleep through the ringing. Cisplatin is the culprit. This is one of those side effects that many people on this regiment experience. It improves or goes away with time for some, but others are not so lucky. I hope it improves for me. It is incredibly annoying, particularly when I'm trying to go to sleep. If it doesn't go away completely, I at least want the volume to decrease enough so that it is drowned out most of the day.
Things like this make it difficult to be excited for the end of my treatments next week. As I get closer and closer to the "end" of all this, it is starting to feel like it's not much of an end at all. I am so hyper aware of all the things these drugs are doing to my body, and at this point I'm checking for evidence that they are going away. My last injection is Monday, but for the coming weeks and months I will be playing the waiting game. Will the ringing in my ears stop? Will the numbness in my hands go away? As the side effects slowly subside and I get my energy back, then I will fight the uphill battle to get back in shape. How much strength and endurance have I really lost? I've got to be honest, I did not work out twice a week all the way through chemo like I said I would. I intended to. I tried to. But I fell short. I couldn't tell you exactly how short because I stopped monitoring as closely when I started to feel worse. I know I maintained the twice per week pace in cycle one. I would guess I was closer to once per week in cycles two and three. It got a lot tougher. So now I get to fight my way back to where I was before treatment. I don't know how long that will take. I anticipate a lot of frustration coming along the way. Then of course there's the cancer. After chemotherapy I go back on a surveillance routine of scans, blood tests, and lots of waiting for results. I dread the waiting. These results could send me in for another surgery or an unlikely second round of chemo. Yes, I will still very likely be cured, the impression I get is that I am most likely cured already, but I still have to be monitored. I still have to figure out how to function while waiting for my CT scan to be read. I still have to shoulder any additional treatment that may come. All this combined with the lingering discomforts and long-term health risks of chemotherapy make the end of my injections less exciting. Am I looking forward to the end? Absolutely! But it's not as clean of an end as it seemed to be a month ago. I have noticed that my outlook during treatment has been closely tied to how I am feeling physically. Reading my posts, you can probably gauge how weak/tired/sick I feel based on the tone of my writing. Draw what conclusions you will about today. All in all, this observation makes me optimistic about life after chemotherapy. I will certainly be physically stronger and more energetic in a few weeks. I assume my outlook will follow suit. Well, I'm through my last five-day run. No more five hour injections. No more back to back days. Just two short injections left: one this coming Monday, one the week after. Then no more chemotherapy. I wish I could say it feels good, but I can't appreciate it yet. I feel sick, as is expected, and this will last at least a few more days. So it doesn't quite seem like I've finished anything. I'll get there.
The week wasn't great overall, but it could have been a lot worse. For starters I was able to get by using just peripheral IVs. No central access needed. Most of the IVs lasted a couple days with some home care, but yesterday's failed partway through the injection. My nurse had to "dig" around with the needle starting a new one. I almost passed out. It is nice to know I only need two more IVs for a while, and none of them need to be in very long. My body has gotten all the cisplatin and etoposide it needs. The short injections are just bleomycin. The side effects will come over the next few weeks, and then I will wait while my body recovers from the poison. It's a gradual end. I will ring a bell on my last injection, but the chemo cycle won't technically be over until a week after that. From there I'm sure there will be lingering side effects that stick around for a while. So I don't know when I'll be "done." But whenever it is, I am looking forward to it more than anything. It has been a relatively smooth start to my last cycle of chemotherapy. Infusion has paired me with their pro IV starter every day this week except her day off. She went to an Eagles concert Monday night and did not work yesterday. We left the first IV in overnight and got two days out of it with no issues. Knock on wood, but she is the only nurse with a perfect record on IV starts. First try every single time. Seriously, I would tip her if that were a thing.
My white blood cell counts rocketed back up during the delay. When they ran the labs Monday morning my neutrophil count was more than double what it was at the start of cycle two. My doc doesn't think I need the immune booster anymore, so no bone pain for me! I really think the extra time in between cycles helped. I got to start this cycle on solid footing both physically and mentally. The numbers back my theory. I've lost 8 pounds so far, down to about 157. Not terrible but not ideal. I am to the point in this cycle where the drugs start to make me feel weak. That might be one of the worst things about chemotherapy. I feel fragile. I quiver. I have lost that healthy 25-year-old syndrome that made even the cancer feel like it couldn't touch me at times. It made the first surgery cake. I am extremely anxious to gain back the weight and feel strong again. A few months before my diagnosis I drove to Colorado, slept, climbed it's second tallest peak, slept, and drove back in a single weekend. I want to get back to the point where I'm not phased by something like that. For the last 6 weeks I've watched daily tasks get the best of me. My workouts are a ghost of what they were. I feel exposed, compromised, strained, like one more wave could knock me down. I miss feeling strong. I miss feeling like I can take a hit. There is a strong physical element to this, sure, but the sensation is more than that. It's a combination of mental and physical. It's a sense that I am well designed and well built. "Robust" is about the best word I can come up with. I miss feeling robust. I have started an after chemo food list. So far it contains Domino's pizza, Mexican food with queso, and sushi. I feel like I'm at the end of treatment, when in reality I still have weeks to go. I'm getting ahead of myself with how I want to feel and what I want to do. I can taste the end, but food still doesn't taste good. I'm still in it. That frustrates me. Friday morning I went to see my oncologist to start cycle three. I expected to go straight to infusion after the appointment, but my preparatory labs came back with results that suggested my immune system had not quite bounced back from cycle two. My neutrophils, a type of white blood cell responsible for fighting off bacterial infections, were low enough that my doctor was not comfortable starting another cycle. He told me that delaying a few days has been shown to have no effect the success of treatment, so my injections will start tomorrow. This allows my body a few extra days to produce more white bloods cells and has the added benefit of giving my veins some more recovery time. My neutrophils will be tested again prior to my first dose of chemo, and I will be given an extra immune boosting drug with this cycle to make sure my white counts don't drop to dangerous levels. This particular drug can come with short term bone pain. I have no idea what bone pain feels like but it definitely seems like something I want to avoid. I have mixed feelings about delaying the treatment. On one hand, it has given me a weekend where I don't feel terrible to enjoy and recover. On the other, it prolongs my vein anxiety, forces me to take more vacation days off work, and pushes my full recovery back three more days.
The last couple days have been good. I do think the extra healing time has helped, and meeting with my doctor eased some anxiety. I feel like I have had a personality for the first time in a couple weeks! It's kind of a tease for the end of the next cycle when I will be completely finished and ramping back up towards normal. I can see the end, but there's still a full cycle to go. First step is to get through this week. Tomorrow marks the beginning of my last cycle. I'm pretty nervous about the next five days. There are too many unknowns around if I will need a central line instead of a peripheral IV and what effects that might have on my chemo schedule. I have also been in my head in general, psyching myself out about little pains and side-effects. I'm just over this whole process: tired of not feeling like myself, tired of being tired, ready to get back to my life. It has been harder motivating myself to post recently, and even when I want to I have trouble piecing the words together. "Chemo brain" maybe. I am going to feel a lot better come next Wednesday. Probably not physically better but hopefully a little more at ease. At that point I will only have two short injections left. The end is in sight.
Yesterday was not great. The Simon Cancer Center dedicated IV team blew three ultrasound guided IVs on my arms. The third IV worked for about ten minutes of fluids before it failed. The fourth worked just long enough to finish my short chemo injection, but started to feel like it was going to blow during my post fluids so the nurse took it out. I only have seven injections to go, but this creates problems. The IV team rarely has to stick someone more than once, and almost never more than twice. They say my veins have become very frail and agitated. This makes it difficult to start an IV, but also makes it more likely the IV will fail mid-injection. That's the part that worries me. Some of the chemo drugs I am on can cause permanent tissue damage if they infiltrate, i.e. come in contact with skin, muscle, etc outside of the my veins.
My doctor says that if we have anymore problems with IVs, we will have to shift to an invasive option: a port or a picc line. These are essentially surgically inserted catheters that stay in for days or months and allow for vein access. I do not want to have another invasive procedure done, particularly not while my immune system is compromised and I am less capable of fighting off potential infections. At the same time, I am very concerned about the risk of tissue damage if one of my IVs fails during an injection. So I'm not sure what is going to happen. Much of it is outside of my control. I am trying to stay extra hydrated to give my veins the best shot possible, but I really don't know how much that will help. Needle-less to say, I am not looking forward to the start of cycle three next week. |