By Jonathan 2 Comments

Chemotherapy Journal

Day 24: March 3rd, 2015

Alright, so we’re back on track. Today is day 2 of my second cycle. A tweet from the Testicular Cancer Society reassured me that the one week delay won’t make a difference in the efficacy of my treatment. So far I don’t feel terribly bad, though the fatigue has returned and I feel the numbness in my face again. Starting next week I will have to inject myself with the Neupogen to ensure that my white blood cells don’t crash again, we definitely do not want to risk any further delays.

Yesterday I got the distinct impression that some of the nurses did not recognize me without my hair. I got those awkward looks you get when someone thinks they know you but they aren’t sure so they decided to play it safe and avoid embarrassment. Well it turns out I was right. One of them confirmed today that I look very different without hair and that she didn’t know it was me yesterday. Not surprising really, I had a regular mop when I first walked in here because I had skipped a haircut in anticipation of the possible need to chemo.

Rachelle has had to go back to work, so I’m solitary now. It’s not too bad, definitely a lot quieter than before. One of the volunteers came buy and we ended up having a great conversation for the last half hour or so of my treatment today. Super nice lady, thanks Sue!

Day 43: March 22nd, 2015

I have not written anything here for a long while because there hasn’t been terribly much to write about. Today is the last day of my second cycle and it went off without a hitch this time. I had to inject myself with Neupogen every day during week 2 which was not pleasant but it seems to have done the trick.

Cycle 2 was a bit worse that the first. I do feel like I got sicker, especially around days 5-10 or so, and my recovery to the “feeling somewhat normal” stage was longer. Because cycle two was delayed my hair started to grow back, but didn’t have a chance to break through the skin which left me with many nasty, tiny, dead and painful ingrown hairs all over my scalp. Not fun! The chemo also seems to make me prone to skin boils, gross! It happened during cycle 1 too but I wasn’t sure if it was a normal side effect or due to the neutropenia, I’m pretty sure it’s a normal thing now.

Cycle 3 starts tomorrow. I approach it with both a sense of dread and relief. Dread because I know I am going to get sick again, food is going to taste bad, and I’m going to be exhausted. But I am also relieved because it’s the last cycle and then, fingers crossed, I’ll be cured.

Day 60: April 8th, 2015

And I’m done! Okay, technically the last day of my third cycle is not until April 12th, but I had my very last treatment on Tuesday, so that’s close enough for me!

It was pretty uneventful overall. They got the IV in on the first try for a change and it was just bleomycin so is was over within an hour. The nurses were joking with me about how I better not come back and that they hoped to never see me again. In a strange way I’ll actually miss that place (but not *that* much!).

Side effects from bleomycin are minor, I had some shortness of breath and some sweating for a few hours in the evening, and as usual I was up a few times during the night to pee as my body went into overdrive trying to purge the poison from my body (not nearly as bad as when I have the cisplatin and etoposide though).

My dear, sweet Rachelle picked me up and surprised me with a helium balloon and a special present for when I feel better and am ready to celebrate my birthday: a big bottle of beer. What a goof she is.

So that’s it. In about a month I’ll have another CT scan to confirm that the treatment worked. Odds are very good that I’ll be declared cancer free, which is a good thing because I am told that “backup plan” treatments are even more invasive and, well, I don’t even want to think about it.

Carpe diem everyone, because life is like a box of chocolates; you never know what you’re going to get. Hopefully lots of cream filled deliciousness, and not too many ones with stale nuts.

Day 86: May 3rd, 2015

Alright! So it’s been nearly a month since my last treatment and I finally feel like updating this journal again.

At this point I am starting to feel close to “normal” again. I have been able to go back to the gym and boy is that a good thing. None of my pants or shorts fit anymore, I had to go out and buy a pair of shorts to wear until I lose some weight. I was somewhat overweight before I started chemo, but I gained at least 2-4 inches on my waist during treatment (it’s hard to tell exactly as waist measurements for pants vary). One thing I know for sure is that I am wearing shorts one size bigger than I ever have in the past, and three sized bigger than what would be ideal. This is immensely frustrating, especially as I am to be a groomsman in a wedding in just a little over two months and need to be fitted for a custom tailored suit several weeks before that. According to a fat-loss calculator I found I would have to consume negative 648 calories a day while maintaining a very active lifestyle to reach my ideal weight in time. Obviously that won’t be happening! Sigh.

That aside, the effects of the steroids have worn off for the most part, my face no longer looks bloated and round. And my hair is starting to return, I’m sprouting normal looking hairs all around my body, and less than normal looking hairs on my head and face. I even have new eyebrows and eyelashes sprouting.

I have CT scan in a couple of days, an then I’ll need to wait a week after that to hear from my doctor whether the treatment was fully successful or not. I am feeling a bit anxious about that.

June 10th, 2015

I can’t be bothered to keep track of the days anymore. Counting is just too much of a chore, ya know?

It’s been over two months since my last treatment and about one month ago I saw my oncologist and was given the good news; as of now I am cancer free. The CT scan showed that my tumours are now completely undetectable, and all my blood work is normal. Oddly, even though the wait in the lobby for my appointment was tense and nerve-wracking, after I got the good news I wasn’t excited to much as simply calm. I think people around me found that a little weird, but nevertheless that’s how I felt. Just calm. Since then I have had exactly zero motivation to write anything further. I think I have been just so glad to be done with chemo that I haven’t wanted to revisit it at all. Plus, we have been very focused on good, positive things. Rachelle and I have been busy planning our wedding which will take place in Mexico next year. Needless to say it’s an exciting time.

Writing about my experience with cancer treatment has been something of a coping mechanism, and I just haven’t needed it since I was told my cancer was gone. The chances of testicular cancer coming back are very small, so I haven’t even worried about that much. But today I felt compelled to write a little update because for the first time in a while I have some concerns.

One of the side effects of chemo is neuropathy. Basically this is numbness or tingling, usually in the hands and feet caused by nerve damage from chemo drugs. My understanding is that it can happen with any chemo drug, but is particularity common with cisplatin, which I received. Worse than that, cisplatin is more likely to cause long-term symptoms. During my treatments I would experience significant numbness in my hands, legs feet and face about a week into each cycle, and then it would gradually get better. I was hopeful, and pretty convinced, that would be the extent of it. Unfortunately that’s not the case. Over the past few weeks I have experienced numbness in my feet, and to a lesser extent in my hands pretty much constantly. It’s not bad enough to have a major impact on my activities, I can still go to the gym and live life pretty normally, but it’s enough to be a constant annoyance and discomfort. I have been reading that these symptoms, when they occur, usually peak at around 3-6 months after the last chemo treatment, and which point they may gradually get better over months or years(!) or they may not. Ever. I’ll be honest, that scares me. I can probably deal with the foot numbness, but if it gets any worse in my hands and makes it difficult to do things like type (I’m already a more clumsy typist than I was pre-chemo) or operate a camera? That would be a major problem for me. But there’s nothing I can do about it, so I am trying hard to be serene and accept whatever may come. On the plus side, my hair seems to be coming back rather nicely.

One thing that I am more conscious of than ever is how precious (and short) life is. Before cancer I already had difficulty with the “have to” lifestyle, but I was living in a state of resignation, and paralyzed by fear of failure. I had given up on a lot of things that were once important to me, and had become a very directionless soul. How I got to that state is a long story and one I am not quite sure I can explain even to myself.

Post-cancer I feel very, very mortal. I came across a photo of myself from just seven or eight years ago and I was shocked at what I saw. In that photo I saw a much younger man. He was lean, youthful, and healthy looking. A far cry from the man I see in the mirror today. Granted I can’t expect to look my best just two months out of cancer treatment, but that doesn’t account for all of it. Sure I gained 20+ pounds during chemo (which I have since lost through very strict diet and exercise) but I was already 25lbs overweight before then.

What happened?

Maslow's Hierarchy of Needs
Maslow’s Hierarchy of Needs

I started trying to fit myself into the “real world”, that is I started trying to meet the societal expectations that are placed upon all of us (or perhaps that we place upon ourselves) and being unable to meet those expectations I became more and more depressed and disillusioned. With everything. This has been tremendously unfair to both myself and to those around me who have been deprived of the company of a man who should have been very happy but was not. On Maslow’s hierarchy of needs I had the physiological, safety and love well covered, but I was very much lacking on self-esteem and self-actualization.

Several years ago I was on a bus. One of the few free seats was right next to me and as an elderly man boarded my internal monologue was, “please don’t sit next to me, please don’t sit next to me”. Well, naturally, he sat down right next to me. I generally don’t enjoy making small talk with strangers so when he started telling me all about his life I cringed at first. I smiled politely as he told me all about how he was in his 90s but still lived on his own and did all his own cooking. But then he suddenly paused and making sure he had my attention said, “Do you know what cancer is?”

Not sure where he was going with this I just looked at him quizzically.

He said, “cancer is what happens when people don’t do what they want with their lives and then they get angry about it”.

At that point I had not even considered the possibility that I could have cancer at any time in my near future, but his words struck me. I thought about all the people I knew who had been cursed with cancer and nearly of them, I was reasonably sure, had been unhappy with their lives. I knew he was right.

Now I am no fool, I know that genetics, diet and environment and age are the main factors in whether you get cancer or not. But it is also a scientifically accepted fact that our emotional health has a direct impact on our physical health so it is not at all difficult for me to accept that there is indeed a spiritual component to cancer, and I don’t need to be a religious man to believe it.

I do not believe in angels in the celestial sense, but if an angel is a messenger then I’d be happy to call that old man on the bus an earthly angel, and he had a message for me.

His message was Carpe Diem.

 

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2 Comments:

  • Lee says:

    Jonathan, we haven’t spoken but you’ve been on my mind as well as Tammara’s. Having received updates from your dad, grandma, and grandpa we felt it best to not pester you with more questions. Strangely enough, the feedback we got from them was substantially different than that which Tam saw posted by Rachelle.

    Anyway, you are very much in our thoughts and prayers and we’re very sorry you have to experience this. If there is anything we can do please let us know.

    Uncle Lee & Aunt Tammara

    • Jonathan says:

      Hello Uncle Lee,

      I don’t mind the questions, I’m actually happy to answer them. Not sure why Dad, Grandma and Grandpa would have different information than Rachelle, maybe it’s like “telephone” where the story changes a little bit with each retelling. Then again, Rachelle is with me every day, and no one knows what’s going on better than she does. She’s also my rock, and doesn’t share with me her own inner struggles with what we’re going through very much. Despite everything, I am a very lucky man and have the love and constant support of not just Rachelle and my own family, but of her family as well who are all amazing people and the best in-laws anyone could have.

      Thanks for the message. Perhaps we will see you at Easter, I will have just finished my last week of chemo then.