By Jonathan 2 Comments

Chemotherapy Journal

Day 6: February 7th, 2015

Well, today is the first day without active chemo “infusion” as they call it. So no trip to the hospital today to have poison pumped through my veins. It’s a small comfort, but at least I get to look froward to maybe feeling a bit better as the day goes on instead of, well, you know.

Ride to Conquer Cancer 2013 Finish
Ride to Conquer Cancer 2013 Finish

Another night of interrupted sleep, though I’m not sure it really makes a difference. Even when I sleep I don’t feel rested.

It’s a long weekend, which means I have three glorious days of freedom from the hospital, and the IV. And perhaps I will actually get to feel a bit better. The nurses say that I will, and that I won’t need anti-nausea drugs this week, or for the next two as I will not be having the two drugs that cause the worst of the side effects. I hope they are right!

I managed to cook myself a breakfast of bacon, eggs and hash-browns. Normally my favourite breakfast but today is was barely okay. Hardly any taste even though I cooked the hash-browns and eggs in the bacon fat. Amazing! Ugh! So many things taste bad already. Even water. It tastes “thick”. Apart from that, I have some numbness in my face, as if I’ve recently been to the dentist, which is odd.

My grandma called me this morning. We had a nice chat. She’s been re-assured by a friend of hers that I’m going to be cured, and I confirmed that is the most likely outcome. Cancer treatment has come a long way and I am very grateful for that. But it still has a long way to go. One day I hope we will find a treatment that doesn’t make you feel half-dead.

Rachelle then showed me some messages on my mom’s Facebook page from friends and family. I quit Facebook a long time ago so I hadn’t seen any of it. I can’t deny it, I had a bit of a breakdown reading the comments. It’s good to know that you’re cared about.

Day 7: February 8th. 2015

Sleep! Why doesn’t it work?! No matter how much I get I still feel very, very tired. But on the plus side I feel okay today, just some minor nausea in the early morning. The next couple of weeks where I am free from etoposide and cisplatin are very welcome indeed, I dread when the next cycle starts, and I’m daydreaming about better days.

Day 8: February 9th, 2015

I am not sure if I am going to keep doing daily updates over the next couple of weeks. I suspect it might get a bit repetitive during these “off” days. We’ll see.

I slept through the night. It doesn’t sound like much, but it’s an accomplishment. Of course that doesn’t mean I am not completely exhausted anyway, but it was nice to not wake up in the dark and end up staring at my phone for hours.

I woke up and ate shredded wheat for breakfast, something I used to hate but for some reason found very appealing today. Maybe my body just knows I need the fibre. My digestion is a mess, but I’ll spare you the details of that. Heartburn has just become an expected part of my life after every meal.

My face, hands and feet have gone numb. It’s a really awful feeling (or lack thereof). The literature I have says this is temporary and will correct within “months after treatment ends”. Oh joy. Months. Of course in “rare” cases it never goes away. That’s not a happy thought. Apart from that my body is just sore all over.

It’s pretty shitty that I have all this time on my hands and no mental or physical energy to actually do anything with it.

Alright, enough bellyaching from me for today.

Day 14: February 15th, 2015

As I suspected I haven’t had much worth writing about over the past few days. I had just one day of chemo on Tuesday and it was bleomycin only which has a much less severe effect on me than the other drugs. It seems to cause an obscene amount of sweating a few hours after treatment, but other than that the side effects are mild and I don’t require anti-nausea medication.

In the days since I have felt reasonably “normal” which has been very nice indeed. The numbness has subsided partially as well, and I have been able to taste my food!

Rachelle and Me After Shaving My Head
Rachelle and Me After Shaving My Head

My hair started coming out by the fist-full on Saturday and it was making a mess everywhere so it was time to say goodbye to my hair. Rachelle had the honour of shaving it off today. I am relieved that it doesn’t look nearly as terrible as I thought it would, so if I should lose my hair for good in the future it won’t be so bad.

This coming week is just bleomycin again, so I am looking forward to a few more days of relative comfort before I start on my second cycle.

Days 23: February 24th, 2015

And here I though I was running out of things to write about. And I was, sort of. There was a good long period of nothing really interesting happening. Sure I was getting a little bit more bald each day, but other than that and the expected fatigue things were completely uninteresting.

That was until this past Saturday. I started out the day feeling fine, but as the day went on I felt worse and worse. Headache, muscle aches, general lethargy. I took my temperature around dinner time. It was 38°, not good. But not quite bad enough to go straight to the hospital. The protocol is to take it again in an hour and if it hasn’t gone down to call the oncologist on call. So that’s what I did, and much to my disappointment she instructed me to go to emergency.

There’s a part of me that would rather die than go to emergency, but at least as a cancer patient I get priority so the wait to at least be put into a room was minimal. Once I was there though I had to wait 3 plus hours in an uncomfortable chair before they let me know they were admitting me. They started me on IV antibiotics. The nurse fumbled around trying to find a vein before he gave up and sent a different nurse in to do it. Evidently the ER nurses aren’t quite as practised as those in the chemo room who never have any trouble.

I spent the first night in acute care, after which I was moved up to the cancer ward. When I was being wheeled into my room, the sister of the patient who was already there started freaking out and caused a big scene because they were “bringing a man into the room, this is a ladies room, you can’t do that!” Lovely. The nurses got her to back down while explaining that hospital rooms have been co-ed for a very long time now. I should mention that the patient herself turned out to be very nice and made an effort to smooth things over the next day.

All in all I was stuck there for three nights. Some friends came and took me out for on the third day which was a welcome reprieve from completely inedible hospital food. Thank you Kevin and Sammi! That same day they gave me a shot called Neupogen which somehow stimulates bone marrow to produce more white blood cells. It’s so effective you can actually feel it working, that is to say I was up most of the night with excruciating throbbing pain in my bones. But the next day my oncologist happily informed me that my white blood cell count had gone from dangerously low to completely normal overnight, so it seems I am very sensitive to the drug. It also meant I got to go home today.

The worst part about this episode is that they had to delay the next cycle of my chemo by one week. I am not happy about that because I have read that delays may reduce the efficacy and ultimate outcome. But there’s nothing that can be done about that.

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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.