I started losing my hair after the second chemo treatment.
It was terrifying.
You don’t realize what losing your due to chemo means until you’ve experienced it first hand. It’s not like your hair sheds more, as it does with women postpartum or when men start losing their hair after a certain age.
It falls out in large clumps, without warning. You brush your hand casually against your hair and are left with a thick clump of it in your hand. It was like something out of a cheap horror movie, like some sort of farce. I had no idea my body could do that. Why hadn’t anyone told me that this was how it was going to be?
It also hurt. It was if my scalp suddenly felt the weight of each and every hair, and it couldn’t take it anymore. Imagine the feeling of having weights tied to each hair follicle, constantly tugging your hair down, and you’ll get some kind of idea how it feels.
I lost the most hair during the first shower after my second chemo treatment, and I couldn’t get to the hairdresser fast enough. “Off, I want all of it off!” I commanded him. He gave me a buzzcut that made me look like a punky 16 year old, but I was relieved. My scalp stopped hurting, and I didn’t see hair falling out in clumps anymore. Yes, my hair kept falling out throughout the treatments — normal hair falling out an a strange fuzzy plume growing instead only to fall out too — but I didn’t feel it and I didn’t see the scary clumps. That was good enough for me.
You see it was these clumps that gave me a vivid visual representation of just what my body was going through. You don’t otherwise see the damage the chemotherapy is doing to each and every one of your cells — you just feel it. So when I go that buzzcut I was taking control, pushing the damage away so I could better handle it. Other patients react differently to this message — oftentimes with denial, or by fighting it. They hold on to every wisp of hair, they hope against hope that somehow they won’t be affected.
At the time I thought they were being silly and immature and just causing themselves unnecessary pain. I know better now. This journey is excruciatingly hard and scary for anyone who goes through it. What gets you through, how you react to it, these are personal things that cannot and should not be judged, even by a fellow cancer patient. Some of us need to mourn through our hair. I needed to learn that and accept that. One of the things that helped me do that is the bitter realization that we live in a world where losing your hair isn’t a superficial change.
St Jude is a research hospital in US that treats children who have cancer. They treat children both from the US and from outside the US, free of charge. If you know the US health system, you know what a big deal that is. They make their research freely and globally available, which in a world governed by the rush for profit, is also a big deal. They’re also spearheading an effort with the WHO to make cancer treatment more accessible and affordable to children around the world (Global Initiative for Childhood Cancer). 80% of children in high income countries survive cancer, but only 20% of children in low income countries do – and that’s because cancer medications (chemotherapy, immunotherapy, etc) are incredibly expensive. I live in a high income country and have a high income myself, but if my treatments weren’t funded by our healthcare system, I would have gone bankrupt.
Blood cancers (just like the one I had) are the most common cancers in children, and they are brutal. The cancers are aggressive, the treatment is aggressive, and any child that has to go through that, wherever they live in the world, wherever they happen to have been born, deserves the best chance that they can get — and I am saying that as an adult who’s lived through the experience.
They say that you need to repeat things 7 times for people to remember and act on them, so I’ve linked to the campaign 14 times in this post, just to be doubly sure you get the message.
I got back last week from a week in Orlando (no, I wasn’t at the pen show, I was on the Galactic Starcruiser — of which I will write a post later on) and am starting to get back to my routine, sort of. In any case, I haven’t posted a weekly update in a while, so I figured that it’s about time.
Health
I got my CPET (Cardio-Pulmonary Exercise Test) results back. I have less lung capacity to work with, which is likely the result of the chemo I underwent. There’s nothing to do about it but keep on running and hoping that my lungs will recover in time. It does mean that I won’t be able to break any more speed PRs anytime soon, but I can live with that. It’s better to be alive than to break running PRs.
I’ve been on an enforced break from running due to plantar fasciitis caused by my not getting my insoles replaced in time. As I have two races next month I’m really hoping to get back to running soon.
For the first time in my life I had perfect bloodwork results, which was very nice indeed and made me and my oncologist very happy.
Reading
I finished reading M Train, and found it both delightful and slightly disappointing.
I finished reading “Well of Ascension”, Brandon Sanderson’s second Mistborn novel. I really didn’t like this one, and I’m not really sure that I’ll bother with the third book in the trilogy.
I read “Winter’s Gifts”, a Rivers of London novella by Ben Aaronovich. I love the Rivers of London series, but this novella wasn’t the best, and you can feel free to skip it and not miss much. It was an OK plane read.
I’m reading “Deep Work” by Cal Newport right now, and so far it’s been pretty insightful. As someone who gets constantly interrupted while working I was interested in seeing if there was a way that I could carve out bigger chunks of time for more meaningful work, and I hope this book will help.
Sketching
I did a tremendous amount of repetitive sketching as giveaways on the Galactic Starcruiser, to the point where my carpal tunnel lifted its head and said hi. I’m giving myself a bit of a break from regular sketching and starting to plan out Inktober. Anything in particular that you’d like to see?
Pens and Ink
I’ve replaced almost my entire rotation. As this is starting to get a little too lengthy of a post, I’ll post a separate blog post about what I’m currently using.
D&D, tabletop roleplaying and LARPs
I ran a convention game, a new one I wrote just for the convention, and it turned out pretty well. Something that I can tweak and rerun in a different convention next year.
My adventure got accepted to the biggest convention in Israel, I-Con, and for the first time ever I’ll be running a game in the “big league”. My game was one of the first to be sold out, with all the tickets going in the first 24 hours, which was super nice and big boost to my confidence.
I’m nearing the end of another adventure in my current D&D campaign, and it’s been going well so far. I took a risk of creating a no combat adventure, but everyone seems to be enjoying themselves so far.
LARPs – I got to participate in the Star Wars Galactic Starcruiser before it shuts down at the end of the month and it was beyond amazing, and is going to get its own dedicated post. Locally, next week marks a turning point in the space themed LARP that we’re participating in and I can’t wait to see where the story takes us next.
Sketches of Banthas for the Galactic Starcruiser. I drew about 100 of these.
General Stuff
I watched season 1 and 2 of “Slow Horses” on Apple TV and I loved it. Phenomenal actors, excellent writing, and my beloved London at its best. I purchased the first book in the series because I loved it so much.
I spent about two hours today clearing out all of my plant pots, adding new earth, sowing seeds. I haven’t planted anything since I got sick in 2021 because I didn’t want to burden anyone with taking care of my plants for me. It took more time and courage than I thought I would need to get out there and sow some seeds, but hopefully I’ll get to see them germinate, grow and bloom. All the seeds I have are from 2021, so I’m not sure they’ll germinate at all, but as I planted basically only nasturtiums and they’re hardy little plants, I’m hoping for the best. In any case progress is marked in the little things, and this little step is something too, I guess.
This is the first of 26 posts on cancer, as part of the alphabet superset challenge. You can read about it here.
In the wonderful sequel to the novel “Daddy Long Legs”, “Dear Enemy”, Sallie McBride, the red haired protagonist who finds herself running an orphanage, clashes with the institution’s doctor, Robin ‘Sandy’ McRae:
“Sandy has two passions in life: one is for cod-liver oil and the other for spinach, neither popular in our nursery. Some time ago—before I came, in fact—he had ordered cod-liver oil for all of the {aenemic}—Heavens! there’s that word again! aneamic children, and had given instructions as to its application to Miss Snaith. Yesterday, in his suspicious Scotch fashion, he began nosing about to find out why the poor little rats weren’t fattening up as fast as he thought they ought, and he unearthed a hideous scandal. They haven’t received a whiff of cod-liver oil for three whole weeks! At that point he exploded, and all was joy and excitement and hysterics”.
Jean Webster, Dear Enemy
The Science
Anaemia, which Sallie struggles to spell correctly in her letters to her friend, is a medical condition common not only among malnutritioned orphans in the early 20th century. Almost a quarter of the population worldwide suffers from anaemia, a condition marked by a deficiency in red blood cells or in hemoglobin in the blood. It means that your cells aren’t getting enough oxygen, and the symptoms include tiredness, dizziness, weakness, shortness of breath, pallor. Anaemia in general is associated with poor health outcomes, increased morbidity and mortality, and tends to complicate any existing medical conditions.
It’s also one of cancer’s best friends.
Wait, what? I thought anaemia just meant that I need to get more iron, B12 or folic acid in my diet?
While most cases of anaemia are caused by dietary deficiencies, anaemia is also a symptom of many types of cancer. In particular it’s a symptom of blood cancers (leukemia, lymphoma and myeloma), breast cancer, lung cancer, colorectal cancer, cervical cancer, kidney cancer and prostate cancer. If you have anemia it doesn’t mean that you have cancer, but if you have cancer, there’s a good chance that you’ll have anaemia.
Why does cancer cause anaemia? For various reasons – from bleeding that causes red blood cell loss (cervical cancer, colorectal cancer and breast cancer), to blood cancers which affect the bone marrow directly or indirectly, to high red blood cell turnover caused by immune system targeting affects of cancer, to iron deficiency (lung cancer and advanced cancers in general).
If the cancer itself left your hemoglobin levels normal, the cancer treatments are likely to trash them. Chemotherapy and radiotherapy target fast growing cells, which include our bone marrow. In the case of blood cancers this is particularly acute. Leukemia and lymphoma patients are particularly susceptible to anaemia, as these cancers indirectly affect red blood cell production, and the treatments target the same areas as well.
And anaemia spells poor outcomes wherever it appears, which is why oncologists aggressively combat it, with medication or with blood transfusions.
My Story
When I was first hospitalized I got a battery of blood tests — blood is the love language of hematologists (blood doctors). I had a lymphoma diagnosis (though it was yet unclear which type of lymphoma it was), and unsurprisingly, I had anaemia. Enter iron infusions — sacks of brown, burnt caramel smelling stuff that was infused into my veins over several days in an attempt to get me in as good as shape as possible into the treatments.
You see, we have iron stores in our body, and even if we don’t consume enough iron in a particular day, our bodies know how to use these iron stores to make up for it. My anaemia was caused not by red blood cell destruction (at this point), but by low Ferritin — low iron stores.
Iron infusions are a bit aggressive — usually if you have iron deficiency anaemia you’ll be told to take iron supplements. These used to cause stomach issues, but there are new “soft iron” supplements that are more gentle on the gastric system. They do take time to take affect, and time wasn’t something I had, so I got the fast lane — iron infusion.
That wasn’t my last bout with anaemia though.
My chemotherapy caused anaemia several times, which I was expecting as it’s a common side effect of blood cancer chemotherapy treatments. Every time I came in to get treatments I had to have my blood tested and if my hemoglobin was too low then the treatment was postponed or if it was very low, you’d get a blood transfusion before treatment. Luckily enough for me my bone marrow was robust enough to survive treatment without me needing (extremely painful) bone marrow growth medication or (very painful and very lengthy) blood transfusions.
Blood transfusions take hours and they burn because of the anti-coagulation medication mixed in with the transfused blood (it’s how the blood is store without clotting). There’s never enough blood to go around (particularly during the pandemic) so doctors have to fight over every blood transfusion they order, and nurses hate dealing with them because of the paperwork and procedure around them and how long they take, and patients loath them because who wants to be connected for hours to a burning IV?
This means that if you’re getting a blood transfusion during treatments it’s because you really, really, really need them. Which brings me to this little anecdote that happened during one of my treatments:
While I was prepared for anaemia during treatments, what caught me by surprise was the anaemia after the treatments. A persistent and annoying “friend” that I had collected along the way, post-treatment anaemia is common with the type and intensity of chemotherapy that I had received. I had also been forced to change my diet significantly post treatment, which meant that I had a B12 deficiency — another common cause of anaemia (particularly among vegetarians, vegans and those that have had bariatric surgery). Several months of B12 supplementation and time for my bone marrow to recover kicked the anaemia’s ass — for now. However, like many cancer patients, anaemia is a red flag, and so my blood work is being constantly monitored, several times a year. It’s probably not surprising that it’s the first thing that both I and my hemato-oncologist check when we go over my blood tests.
What Can I Do About It?
1. Get regular bloodwork done. Talk to your family physician/GP about getting regular blood tests — before I was diagnosed with cancer I got them once a year. Once you get your bloodwork done, check your hemoglobin levels. Hemoglobin blood tests are part of a CBC (complete blood count) test.
2. If you do feel weak, dizzy, you’re pale, your feet are swollen, you have heart palpitations, shortness of breath or any other anaemiarelated symptoms, talk to your doctor.
3. If you can donate blood, please donate blood. Blood transfusions help cancer patients survive, as well as helping trauma patients, patients undergoing serious surgery and pregnant women during labour. Every blood donation saves lives (usually multiple). Be a hero — donate if you can.
In April 2022 I sat down and wrote the first part of what was supposed to be a long term writing project, the toughest one that I wrote yet. It was called “Hair Part 1” and it was part of something that I called “The Cancer Project”. The plan was to write a series of posts, all taken from my personal experience with cancer, and the point was to open a window into a very scary disease — humanizing it and the people who go through it, and arming the reader with information.
I didn’t post anything beyond that first snippet of a post, and I didn’t draft any more posts in the project. I was 4 months out of treatment when I wrote that post, and it was excruciatingly difficult to write. After I posted the post, I decided to focus on writing about other topics, easier topics. Topics that anyone else could write about, if I’m being honest. Sure, I could write a pen review from my own unique perspective, and of course people would read it because it’s useful and interesting to see different takes on the same thing, but then again… “so what, who cares?”
That challenge, “so what, who cares?” was something one of my professors used to say, and at the time it drove me mad. The point was that we didn’t have to make an argument, we had to make the reader care about the argument, we had to explain why it was meaningful and important, not just why we thought it was true. Pen and ink reviews are awesome, but every time I post one nowadays, I feel guilty. I know that I could be writing about other things, things that can maybe help people.
Last week this video popped into my YouTube feed, from the wonderful Struthless channel. Campbell Walker is starting a new community challenge meant to get people creating and posting their creations. It’s called Alphabet Superset, and the idea is to pick a theme, pick a creation medium and a publishing medium, make some aesthetic choices to limit yourself, and for 26 weeks create and post something that fits this framework — one piece a week, with the topic being tied to a letter of the alphabet. I looked at the schedule, and quickly realized that I won’t be able to follow it, but that didn’t matter. The challenge presented an opportunity, and more specifically a framework. I no longer had a giant abstract monster of a topic to maul, I could break it down to smaller chunks, albeit somewhat arbitrary ones.
Running through the 26 letters of the alphabet proved to me very quickly that my issue won’t be so much finding a topic that would fit the letter, but having too many things to cover per letter. “Ah!” my brain said, “an excellent reason not to start!” As you can see, it’s going to be a struggle between my need to write this project and my brain’s resistance to it. The odds aren’t in my favour: my brain, and specifically my PTSD, has shown itself to be a ruthless and tenacious opponent. It’s going nowhere, and it *will* fight me all the way through. However, I plan to dodge, feign and crawl my way through this one way or another. My PTSD may be persistent but I’m STUBBORN.
On to the practical side: I will be running through 26 letters of the alphabet. As the next three months are travel heavy, I won’t be able to stick to the “one post a week” schedule. Each letter will get at least one (maybe more?) blog post, and perhaps also a comic that I’ll create (no promises). I will clearly title all the posts in this project “The Cancer Project” so if you are one of those people who is absolutely terrified of cancer to the point of being incapable of hearing the word, you can avoid reading them. I do encourage you to grit your teeth and read them though. It may end up helping you, it may up end helping you help a loved one. The reality is that almost all of us will encounter cancer face to face at some point in our lives — whether as caregivers for a parent, sibling, spouse or child, or as cancer patients ourselves. So it’s useful to remember this:
When you finish your chemo treatments that’s not the end of your journey with cancer. In a way, it’s just beginning. You enter a new phase, one of constant dread, one of “wait and see”. You are in remission – for now.
And who are you to complain? You are in remission. Many cancer patients don’t get to this blessed state, and you are happy you made it, but it’s alway a happiness with an asterisk. Especially during the first year post treatment.
So, it’s been a year. I got my last treatment on the 21st of December 2021 (nice date: 21.12.21), and then had about a month of feeling like absolute trash – like three locomotives carrying every ailment in the world slammed into me at once. I was on old school chemo, not the new fangled targeted stuff, no immunotherapy for me: my treatment was discovered in the ’70s and it’s good enough to remain the gold standard 50 years later.
But I kept on walking, and I kept on eating and drinking and taking my meds, and gradually I started to feel better. I got my tastebuds back. My hair started to grow again. My blood tests started to improve. The number of meds I was on got smaller and smaller until it was replaced just by a few vitamins that I was prescribed to take care of the damages still left. I got to see my doctor less and less often. We’re now at the wonderful “every three months” mark. I lost the weight that I gained from the steroids.
I got back to running: 1k, 2k, 3k for while as my lungs got better, my heart got better, and I learned to deal with my PTSD better. Then 4k, 5k, and back to long runs. These days I run five times a week, four 5ks and one 10k long run. And running means so much to me I can’t express how much it means that I get to enjoy it again.
I also got back to lifting weights at the gym, to meeting people face to face, to listening to podcasts that I used to love (though there are some old favourites that I can’t listen to these days). I went back to the office, back to public transit, back to travelling abroad, back to participating in races. I went to two escape rooms with my friends.
But I didn’t go back to being the same person.
That’s impossible, and all the time I see cancer survivors struggling to come to terms with that. Even if you lucked out and didn’t get PTSD (about 25% of patients do), cancer leaves an indelible mark on you, on the way you think, feel and react.
Thankfully I realised that about halfway through my treatments, and I like the new me. And I’m comfortable enough saying that without hedging, explaining or apologising. Period.
I have another year of high risk of relapse, which means a checkup every three months, and then three more years after that of checkups every six months. Then, at the five year mark, I’m ostensibly free. From the cancer patients groups I know there’s no real freedom from this, but it’s something that I’m gradually learning to live with. Right now I’m still at the “every twinge, cough and ache is a cause for panic” phase. It’s not a fun place to be, and you get to stay there for a good long while. But I’ve made it through the most high risk year for my kind of cancer, the first year, so I get to celebrate for a bit. I brought a cake to work this week, and I plan on celebrating with my family this weekend, and completely ignoring the panicking voice in my head that is yelling that I am tempting fate. If my cancer returns, it returns and I’ll deal with it then.
For now it’s been one year since I finished chemo and I get to celebrate.
A year ago, on the 13th of July 2021, I started my first round of chemo. I was hospitalised and connected to oxygen at the time (my tumour was so large that it had collapsed both of my lungs, and my lung capacity was well below 35%). My last run was 1.2km on the 3rd of May 2021, done at a crawling pace on a treadmill. My lungs couldn’t carry me through my runs, and I had started feeling it from April 2021, but tried to push through it as my GP insisted that I was OK.
Today is the last day of July, 2022. This is my running distance for the month:
104.1 km of running in July 2022.
Running was one of the things that I missed the most while I was hospitalised and then throughout chemo and the months immediately after treatment, when my body was too broken down to carry me through a run. Words cannot express what running means to me. They just can’t.
I ran more than a 100 kms this month, lacing up for 21 times, getting back to a baseline of 5k runs five times a week. Despite the heat. Despite the humidity. Despite my lungs and my PTSD.
I only wish there was a way to send a message back to the me that lay in that hospital bed connected to the chemo IV, to let her know where I’d be a year from then.
So there’s a whole thing going on with Will Smith slapping Chris Rock at the Oscars for making fun of his wife’s hair. Jada Pinkett Smith has alopecia, which is something that one of my oldest friends suffers from as well. Hair can fall out due to a multitude of reasons, from autoimmune diseases to genetics, traction, poor nutrition and stress. But I’m not here to talk about Jada Pinkett Smith and her alopecia, or even about my friend’s journey with alopecia: I’m here to talk about cancer related alopecia.
The very first thing my doctor told me when she came to my hospital room to talk about treatments was that I’d lose my hair. I was on oxygen at the time because the tumour in my mediastinum (that the middle bit of your body, where your most important veins go, right up against the heart and lungs) was so large it was restricting my lungs enough to make me need oxygen to stay alive. At that point I had barely been sleeping in days, I had barely been eating, the main thing that I was doing was inhaling and exhaling, fighting for each breath. I had been waiting all day for a hematologist-oncologist (that’s a hematologist, a blood doctor, who specializes in blood cancers, which is what I had – Hodgkin’s Lymphoma) to take up my case and start taking care of me. I was very happy that the doctor that I wanted took up my case despite her already heavy caseload: she was kind and brilliant, and that’s not a common combination. She came in to my room with the paperwork for the chemo treatments (you have to give consent to getting poison pumped into your system, as chemo is basically poison in a dose that is meant to kill the cancer but leave you alive).
And the first thing she told me was that she was sorry, but that I was going to lose my hair.
I had read up about the side effects of the treatment that I was about to go through (ABVD chemotherapy), and I was afraid for my heart, my lungs, nausea, getting a chemical burn during treatment, and neuropathy. The last thing on my mind, the last thing I was worried about was my hair. The mouth sores seemed more scary.
The hair loss theme returned during my first meeting with the cancer centre’s social worker. An efficient yet caring battle-axe of a lady she told that from her experience ABVD patients didn’t lose all of their hair, they just lost most of it. She was looking at my head at the time, and it was before my 2nd treatment, so I still had all of my hair. My doctor had told me that the hair-loss happens after the 2nd treatment, and she was, of course, 100% correct.
Then there were the women in the closed cancer Facebook groups. I had joined a few, one for Lymphoma patients, one for young adults with cancer. They were a source of information and camaraderie, and a good amount of gallows humour. One of the women in the group, a new member like me, said that she would lose her mind if she lost her hair and asked if there’s a way to prevent it. Another asked about wigs and young children: is there a way to have the wig attached so that they can’t pull it off.
I thought that they were all being a bit silly. Yes, I know, that’s unkind and insensitive and I’d learn better with time, but I’m being honest here. I was literally fighting for my breath before the treatments, and they allowed me to breath. The side effects were far from being a walk in the park, but losing your hair didn’t hurt (I was wrong), and was just a superficial change (I was wrong), and a temporary one, so why focus on that and not on more serious side effects? (I was clueless).
I’ve started a new reading challenge: reading all the Tournament of Books 2022 books. I’ve done this twice in the past, in 2019 and in 2020, and it has been a great way to read contemporary fiction that is not necessarily on the best sellers list or the awards circuit. I would never have read “The Book of Broken Angels,” “Overstory,” “Milkman,” “My Sister, Serial Killer,” “So Lucky,” “America is Not the Heart,” “A Terrible Country,” “The Brief Wonderous Life of Oscar Wao,” “Cloud Atlas,” “Wolf Hall,” “A Mercy,” “On Earth We’re Briefly Gorgeous,” “Nothing to See Here,” or “Girl, Woman, Other” if not for the Tournament of Books lists, and that would have been my loss. And while I generally like the list and particularly the way that books are pitched against each other, I tend to not like the judges’ commentary or choices, so I usually ignore them and create my own rankings. Why compare pairings of books in this way in the first place? It’s usually a way to gain some more insight into the books that I’m reading, which is why I keep the “tournament” aspect of it in mind when I log or review the books that I read.
The Tournament of Books logo for this year.
I read significantly less last year (2021) than I did in previous years, only partly because I got cancer. I allowed myself to get off the “maximum books per year” racetrack, and focused more on reading either books that interested me, or books that comforted me. Some of my reading plans went completely awry once I got sick – I was planning on reading the Tournament of Books Tournament of Tournament books (I still do, as they all seem fantastic), but I just couldn’t face the effort once I started chemotherapy. Books were a huge comfort and a necessary distraction for me during my hospitalization and treatments, but they weren’t literary fiction kind of books. I read cozy mysteries and fast paced sci-fi because that’s my reading equivalent of comfort food. Sometimes that’s what you need in a book, and that’s part of the magic of reading: there is a whole array of “comfort books” geared perfectly for your specific needs, if you only know what you’re looking for.
I’ve talked to other people who have gone through chemotherapy (they tend to come out of the woodwork once you start treatments yourself), and even the avid readers among them stopped reading during treatments, and sometimes well after them. Chemo brain is a real thing, and it makes reading challenging, and oftentimes you want something a lot more attention grabbing than a book during treatments or while you’re recovering from surgery. That’s what streaming is for, and I thank Disney+’s “Loki” and “The Mandalorian” for helping me out during some really rough nights. But somehow books never lost their appeal to me, despite the lure of endless, easily consumable, entertaining content. This isn’t to condescend on “non-readers,” especially not my fellow cancer patients. It’s just to say that different minds are wired in different ways, and mine is wired in this specific way. Once I start reading I generally get carried away and have trouble putting the book down (unless it’s a truly terrible one). This was useful when I tried to forget that I was connected to 3-litres of poison that was dripping into my veins, although it was a little annoying to my long suffering family who were with me during treatments and often just wanted to talk. Sorry, guys. You deserved better.
Once the 2022 Tournament of Books list was published I decided to give it a go again this year, to challenge myself to read all eighteen books on the list. Unlike in previous years I’m being kind to myself and not trying to rush through all of them by the time the tournament judging begins in March. As I started reading before the brackets were published, and so started alphabetically, I read Mona Awad’s “All’s Well” first. It’s a very well intentioned book that completely fails on delivery for me, and I struggled to finish it. I almost gave up on the challenge entirely, except thankfully I decided to read the book that it’s up against, “The Trees” by Percival Everett before doing so and it is phenomenal. I’m almost done with it, and it is viciously funny, dark, thought provoking, and a fascinating and original read. Everything you hope for in a book, and all this in a book that I’ve never heard of before, from a writer I’ve never heard of before. This is exactly why I put myself up for this challenge in the first place.
My neuropathy is killing me in this weather, and this was a literal pain to write, so I will end here by saying: treat yourself to some book exploration this year, if you haven’t done so recently. You never know what gems you’ll find.
I’m having my (hopefully) last round of Chemo today and I’d thought I’d document the procedure as I go through it.
4:45 – Woke up and started taking care of my cats, making breakfast, getting ready to leave for the hospital. I need to drink at least two glasses of water before I go, one of then with Normalax. The water is because I have to have a blood test before the Chemo starts. The Normalax is to prevent one of the less pleasant side effects of my Chemo: constipation. As in all the rest of the adverse effects, prevention is easier than treatment.
6:00 – I leave my house and set out for the hospital. My dad is giving me a ride as there’s little chance that I’ll be able to catch a cab in this weather. I’m wearing athleisure clothes (sweatpants, t-shirt, hoodie and a coat because it’s raining). I never wear jeans to your Chemo, because logistically they’re harder to manage one handed, and depending on where you have your IV inserted, you may have to manage your pants one handed. It’s the little things.
6:30 – I’m at the hospital. At 6:45 the line opens up for the secretaries of the Hemato-Oncology outpatient treatments. The secretaries themselves start working at 7:30, even though the nursing staff is here largely by 7:00. The Oncology secretaries start working at 7:00, and I have no idea why. The Oncology outpatient treatment area is across the hall from the Hemato-Oncology one. Usually when I get here at 6:30 there’s 3-4 older gentlemen already waiting to get a number in line for the secretaries. I have no idea when they arrive (I joke that they must have spent the night here to be first), but they’re almost always here, and once they get their number they start a parliament of news analysis and general gossip. Why arrive so early when at the earliest you can start pre-treatment procedures at 7:30? Because this department has outgrown this building a while ago and the new building expansion won’t be ready for 2-3 years yet. That means that there’s a dearth of seating areas for treatment, and and even bigger shortage of good seating areas. When you spend 4-5 hours at least sitting getting treatment getting a good place is a thing. There are two rounds of treatment – the morning one and the noon one. I’m always here in the morning, and if I don’t get here by 6:45 at the latest, I’ll be 10-11th in line and with little chance for a decent spot. You snooze, you lose. Although this time, maybe because of the weather, I’m the first one here.
6:50 – I’m the first in line! The parliament of elderly gentlemen arrived, but arrived later than usual. A lot of sour faces that I beat them to the punch. 😂 As usual, I’m the youngest person around by a pretty large margin. I only once saw a person my age getting treatment while I was here.
7:47 – got my IV in (from a fantastic nurse), blood test done, got a great seating place (private and near a window), and I’m now waiting for my blood test results and to see my fantastic doctor.
8:10 – The usual technician that analyses blood tests isn’t here, so my blood work is delayed. It’s going to take a while.
8:20 – My blood test results are back and they’re good enough for me to get treatment. Yay! Going into the doctor’s office. My brother is saving my seat downstairs, and will be my escort for today. There’s a 30 minute interval where I’m not allowed to move, and during that time I need someone at my side to help me out and call the nurses if they’re busy and don’t hear the call bell to change IV bags. Also, I need help in general once I’ve started the treatment, and it’s nice having someone around to talk to.
There’s a festive feeling now that it’s the final treatment.
8:30 – done at the doctor’s office, and brought my prescription to the nurses. Took my Akynzeo pill, which is a strong anti-emetic with an effect that lasts for 5 days.
8:40 – first IV bag starts – 10mg of Dexamethasone (steroids). It used to be 20mg but I asked for it to be lowered during the last three treatments. It’s still a lot of steroids. They serve as an anti-emetic and to help me survive the treatment.
9:05 – first IV bag finished. Spent the time talking with my funny and entertaining brother.
9:10 – it’s not a busy day here, so the pharmacy fulfilled my prescription quickly. They prepare the IV bags for me specifically, on the spot. I get a paracetamol pill (only one, because it’s part of the protocol, nobody is sure why), and two nurses cross check my personal details against what’s printed on the IV bags and is the computer. I get connected to my first chemo IV bag, Adriamicin. It’s a red fluid that can burn my veins if the IV isn’t in properly, so my nurse checks the IV. This and the next bag are given without the use of a machine, just gravity and my veins. I’m not allowed to move while it’s being given.
9:20 – second IV bag, also outside of the machine and of potentially burning chemicals. It’s Vinblastine, which is what causes the neuropathy side effect. I’m also not allowed to move during this. My favourite nurse came to say hi, and congrats for getting to the end of my treatments.
9:30 – Scary IV bags are done. I get a vein wash and am connected to Bleomicin, my third IV bag, this time through a machine. In 10 minutes I can move and go to the bathroom.
9:50- had my first bathroom break. It’s always a bit of sensation because the pee comes out red because of the first chemo bag. I didn’t know that the first time so it kinda freaked me out. I will be getting two litres of water as part of my chemo (the chemicals are diluted in water), and I’ll be drinking at least another 0.5 litre this morning as one of the chemicals really dries my mouth out. That’s on top of the two cups of water and one cup of coffee that I had this morning. So lots of bathroom breaks in my future, though I won’t be documenting them.
Not a great view outside but at least it’s a view.
10:05 – third bag done. Now waiting for the nurse to change my IV bag. The last chemo IV burns when you get it, so they administer it slowly, and I might need a hot compress on my arm if the vein is narrow.
10:10 – connected to what is hopefully my final chemo bag. Decarbazine.
10:18 – the IV hurts so I get a hot compress (a water IV bag heated in the microwave and placed in a pillowcase) to press to my arm and expand the vein. The alternative is to lower the IV rate, but as it is this bag will take 1.5 hours.
Me and my hot compress.
11:00 – still on my last chemo IV bag. There will be a water IV to rinse out my veins in the end. Got my compress reheated, and I’m reading “Harlem Shuffle” on my Kindle. I’m still using only one hand, so the Kindle is the best for reading under the circumstances.
11:30 – finished the fourth and final bag of chemo. Waiting for an IV flush.
11:45 – I’m done. One of the fastest treatments yet. 🎉🎉🎉
Writing at Large 