One Year Since I Finished Chemo

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.

Weekly Update: Go on a Run Anyway

It was cold and dark outside this morning, with a chance of rain. My legs and body were sore from a combination of an intense gym session and standing/walking around at a conference yesterday. I didn’t feel like running. I went on a run anyway.

This was my reward:

I’ve never regretted a run yet, and today was no different.

Health

I started getting my post chemo treatment tests done, and while my lungs still aren’t 100% (but hopefully will someday get there), my heart and SVC got a clean bill of health. As both the tumour and the chemo slammed it, I’m very relieved that my ticker survived. Can I chalk it up to years of running? Maybe. It surely didn’t hurt.

Reading

I just finished reading “The Golden Enclaves” by Naomi Novik, the final book in the Scholomance trilogy.

It’s rare that I see an author really working out a new concept, a new kind of world building out of a tired trope, and doing it so well. It’s even rarer that the author in question is able to pull it off while still creating a readable and enjoyable story, and one so cohesive that it is clear at every point that this was constructed as a trilogy on purpose, from the start, with every piece of the narrative falling exactly into place in the end with elegance, and without calling attention to itself. This is a mechanically excellent piece of writing that doesn’t call attention to its mechanics.

Instead it calls attention to its characters, their relationships with each other, and in particular their relationship to the deep, inherent, and seemingly justified inequalities in their world. Inequalities and injustices that aren’t very hard to map onto many of those that exist in our world today.

Is the Scholomance trilogy perfect? Of course not. The characters don’t attain true depth because the cast is too large, the world needs building and that needs room, plus, these are teenagers after all. Many of them are still working out their personality. But despite its imperfections this is a very enjoyable trilogy that is worth reading, and won’t leave you feeling like you just consumed several hours of empty air. There’s substance here.

Other stuff

I’ve been creeping back to writing, albeit only adventure writing for D&D. I’m creating a new campaign, in a new world, something that I haven’t done for years.

I’m also looking into planning for next year. I have been really struggling with this mostly because of my cancer related PTSD. More on that maybe in later posts.

If you have Disney+, I recommend watching “The Magic of Animal Kingdom”. It made me smile.

Happy New Year!

Happy New Year! May 2022 be better than 2021 in every possible way.

From the Yayoi Kusama exhibition in the Tel Aviv Museum of Art

A Day at Chemotherapy

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.

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. 🎉🎉🎉

Resilience: A Health Update

While I was taking a walk a few days ago I saw this tree branch grow out of a tiny crack in a solid stone wall and I was impressed enough by its tenacity and resilience to draw it. By chance this drawing is on the opposite page of the one I made for my last health update, which seems appropriate.

I underwent a PET CT on the 9th of September, and thankfully the results were good. The treatment is working, kicking my cancer’s ass and not just making me feel bad. I went through another round of Chemo on the 12th, my fifth round so far, and the side effects are stronger and taking longer to fade away between sessions. This is to be expected, as the Chemo’s effects are cumulative, but I’ve decided to be like that tree: resilient. I’m making minor adjustments to get me through the post-Chemo days, working out ways to help me ride out the pain and unpleasantness of the worst of the side effects. It’s hard to pick up a pen or brush in the first days after treatment, and I sometimes lose fine motor control. So I’m using larger and lighter pens, and I take photos of things that I want to draw instead of working on location. At home I can take my time while sketching, take breaks, experiment with looser drawing. The drawing above isn’t large or complicated, but it took me two days to complete (one for line work and one for the watercolour).

Resilience. One treatment at a time.

Health Update for the New Year

It’s been a while since my last update, so I thought that I’d write a new one. On August 24th I had my fourth chemo treatment, and it went rougher than the ones before it in terms of side effects. The worst of the bunch has been my neuropathy, which until now has been not so bad. This time however, both my hands were numb and tingly, and the tips of my fingers actually hurt. It’s been hard typing, holding a pen, drawing. It’s not that I’ve stopped doing these things, it’s just that it’s been a challenge to overcome the pain, to focus more to get my hands moving the way that I want them to. But I haven’t given up, and I’ve managed to type, write with my pens, and even create this drawing:

Not bad for someone with semi functioning fingers, right?

My hands have gotten better with time, but they are getting better slowly, and they still haven’t returned to normal. I’ve discovered that lighter fountain pens with bigger barrels are the best in terms of being easy on my hands, and although my handwriting has suffered a bit due to the pain, it is still recognizably my handwriting.

What’s next? On Thursday I have a PET CT which will determine what the rest of my chemo treatment will be, and on Sunday I’ll have the fifth chemo treatment. I’m not looking forward to either of these things, and as the PET CT is approaching my anxiety levels are rising (I really need good results on it). Meanwhile I’m trying to distract myself with work, books and season 2 of “Ted Lasso”. Here’s hoping for good results, and less pain for the Jewish New Year.

The Secret Garden

In the middle of London’s West End there’s a beautiful secret garden, the Phoenix Garden. Ever since I accidentally discovered it, it has been my number one favourite place in London. There’s something about the green and the peaceful quiet in the middle of one of London’s busiest areas that is mesmerizing. During the rough parts of my latest hospitalizations I shut my eyes and transported myself to my favourite bench there.

So I decided to create a very quick sketch of one of the benches there, and try to work on my plant textures. This is clearly something that I still need to work on, but it’s good to know where I started.

Watercolour sketch of a bench nestled in greenery at the side of a reddish path. — Quick sketch of a bench in the Phoenix garden

Here’s a photo of this magical place:

Skyscraper in the background, pigeon flying on the left, and green garden with a red brick path in the foreground. — The Phoenix Garden in all its glory.

An Update on My Health

Since my last post on the subject about a month has passed, and boy did a lot happen during that month.

The super traumatic biopsy I went through didn’t yield results, so I had to be hospitalized again (for the third time) to get a mediastinal biopsy under full anaesthesia. My first ever operation.

The procedure went well, but my recovery took more time than planned, and the results of the biopsy took two weeks to arrive (hello, Grey’s Anatomy with your very realistic “8 minutes for a biopsy result”). By the time the results arrived I had more and more difficulty breathing, to the point where on the day of their arrival I came into the hospital to be hospitalized for the fourth time, this time because I just couldn’t breath.

I never thought about my breath so much as I did during those few days. I was connected to oxygen and pumped full of steroids and still had to consciously think and struggle for each breath, for every inhale and exhale. You can’t talk, you can’t sleep, you can barely eat, you just breath, breath, breath.

Luckily the biopsy results were better than any of us could anticipate: I have Classic Hodgkin’s Lymphoma. It’s very treatable, and though it requires chemotherapy, the course is less intense than I had anticipated.

Two days after my biopsy results arrived I got my first chemotherapy treatment (ABVD, for those interested), and an hour and a half after treatment I could breath independently. I didn’t need oxygen. I could speak in whole sentences. I could be released home.

View of succulents and other plants with the sea in the background. — I have to replace my runs with walks now, but luckily I live in a place with nice walking views.

I have a chemotherapy treatment every two weeks. I’m slowly rebuilding my routine around those treatments, and so hope to start posting more often now that my life isn’t a complete chaos of hospital/home/hospital/home. There are things that I won’t be able to do for a long while (such as running, which is a heartache), but luckily most of my hobbies and all of my work are things that I can do indoors, at a computer or a desk.

Take a good, long, deep breath for me and appreciate it. It really is precious.

Typewriters, pens, pins, and more.

My Pen Chalet exclusive Typewriter Retro 51s arrived this week, and the mint one is a perfect match to my Hermes Baby (and Hermes 2000) typewriter keys. I’m happy that I splurged on this pen and the copper Typewriter edition. They are both utterly unnecessary pens that make me smile without breaking the bank. I have 11 typewriters, but these are the first typewriter themed Retro51s that I’ve bought. I only slightly regret not getting the red one as well.

It was a virtual convention kind of fortnight, and in both cases the pandemic afforded me the opportunity to go to a convention that I normally wouldn’t have been able to attend. The fun and pretty well run one was the Disney Pin Trading 20th anniversary event. I’m not a huge Disney pin trader by far – I have pins from my Disney races and a few others that caught my eye, because I’m so aware of how easily I got fall down that rabbit hole. But I was curious enough about the behind the scenes of pin creation and well aware that is probably going to be my only chance to attend such an event that I enrolled. It was interesting and fun, and a generally well thought out event that didn’t feel like a “we’re doing the same thing only on zoom” kind of thing. I wish that I could say the same about Kubecon, the second convention that I attended. It’s a poster child of how not to run a virtual convention. Still I managed to learn quite a lot from the hours that I squeezed in, and I plan on catching up on more video sessions next week.

My first Disney Pin Trading Pins, from the DLP inaugural half-marathon weekend.

This weekend was stormy, so no long run today. I had about a month of perfect running weather so far, and it looks like I may yet make my 2020 running distance stretch goal of 700km run total this year.

In a fit of anger and frustration I created an “obituary” page for 2020 in my journal, but one that listed the bad moments of the year. It ended up taking four pages, but I managed to find something positive about most of the moments and events of the year, so it cheered me up.

TV (or streaming to be exact) has been one of the high points of the past few weeks. I don’t watch much of it, but “Ted Lasso”, and the new seasons of “The Mandalorian” and “Star Trek Discovery” have been great to watch. Also I’ve been playing “Pandemic Legacy Season Zero” and so far it’s excellent and distinctly different from its predecessors.

The Cancer Notebook

My most important notebook is this Rhodia pad:

In the middle of 2018 my mother was hospitalized and then diagnosed with a very serious, advanced, life threatening condition. Six months of constant battle, second, third and fourth opinions, and a lot of reading of medical papers later I managed to pull her out of the “you’re fat and that’s why you’re sick” sinkhole and to get the doctors’ full attention. She was re-diagnosed, this time with two, possibly three, types of cancer. In the end of 2018 my mother was taken off the transplant list and rushed into biological cancer treatment. She had an extremely rare condition, and her doctors didn’t know if the treatment would help. It ended up saving her life, but this is not what this post is about.

This post is about stationery. It contains no pretty templates, no flashy colours, no glitter pens. It’s just a few insights into small, pragmatic little things that I wish someone had told me when my life fell unexpectedly to pieces and I took on a new, additional, full time job: a seriously ill family member’s advocate.

September is childhood cancer awareness month(please donate to St. Jude here). Cancer is not something you plan for but statistically speaking its something that the large majority of us will have to deal with at some point or another. It’s also far from the only serious disease or condition a family member can fall ill to. Here are a few things that I wish I knew going in, stationery related things that would have saved me a lot of time and worry:

Get a large folder, larger than you think you’ll need. Find a permanent place for it in your house. If you don’t have a printer, get a printer. This is a must. Print out every test result, doctor’s summary letter, referral, application form, etc related to the disease. You need these in hardcopy (oftentimes more than one copy), as you’ll be bringing them into doctor consultations with you. These things may be digital now, but that’s not good enough. If you go get a second opinion, the doctor may not have access to the computing systems of your previous doctor. You may want to change health providers along the way, and you need to make sure that your new doctor has all the required information at hand. Put CDs with CT, MRI, US, and PET-CT results in that same folder. Make sure that you get a copy on CD of any imaging test you take.
Get a simple but good quality writing pad, and a ballpoint or gel ink pen to go with it. I use a staple bound Rhodia 16 pad, with a clip to keep it shut. It needs to be clearly marked as your “doctor notes” notebook. It needs to have a permanent place in your house, just like the folder. Why? Because you never know when you might have to rush to the hospital, and the last thing you need is to waste time searching for your folder and notebook lifeline. Because this notebook will become your lifeline.
The ruling on the notebook doesn’t matter, but I really recommend using a top bound notebook, and keeping it very simple and professional looking. You’re going to have enough of an uphill battle, let this notebook be a helpful tool, and not a distraction. I also recommend forgoing pocket style notebooks, or A4 sized notebooks. An A5 size (or equivalent) is best. Why? Because you’ll be using this in doctors’ offices and in hospital waiting rooms, not just while researching things in the comfort of your home. More often than not you’ll be balancing the notebook on your knees, sometimes while standing. You also want to have enough room to write, without being encumbered by a too large notebook. A5 means that you’ll likely devote a page for each doctor’s visit, so all the relevant information will be in front of you when you reference it later.
Use a ballpoint or a gel ink pen, don’t use a fountain pen. This is not the time nor place for that. I used the Ti Arto for most of my notes. Why? Because I easily wipe it clean with alcohol wipes after each visit to the hospital, because it’s dependable and not flashy, and because it doesn’t have a click mechanism, so I can’t fidget with it.
Take the notebook with you to every doctor’s visit, every exam, every consultation, every hospitalization. Take notes of EVERYTHING. What the doctor says, even to themselves or a colleague (write stuff down phonetically and ask for clarification about it later), what books they had on their shelves, how many kids they have and what their name is (part of your job as advocate is to remind the overworked doctor in front of you that your family member is a person. A good way to do that is to treat the doctor as one too.), what is the name of the secretaries, tips that you get from other patients (be extra nice in waiting rooms: there’s a mine of information around you), information about aid and support programs, names of other doctors, nurses that the best at taking blood tests, physical therapists that are extra patient and positive, etc. There will be times where doctors tell you that you don’t have to write everything down, they’ll write it in the summary letter for you. Smile kindly at them and continue to write. They’ll never write down everything that you will, trust me on this.
Refer back to this notebook when you’re at home. Use it to help with any research you’re doing (patient rights, finding support groups, finding other doctors to consult with, etc), to help you keep track of what was said when at which doctor’s office, and to generally keep you grounded. Also, if you didn’t have time to write everything down when you were in the doctor’s office, write down what you missed as soon as you get home.
Use it to vent. The back pages of my notebook are full of curses. That may or may not work for you, but it certainly helped me not lose my mind during the darkest hours of my mother’s ordeal.
Don’t forget digital tools. You’re going to need a spreadsheet to track the family member’s weight and crucial, disease indicating test results. Which results are important to track? It depends on the disease, and that’s what your notebook is for. As soon as possible get that information from the doctor, and write it down. Don’t trust them to do the day to day tracking for you – they have hundreds, sometimes thousands of other patients. Track whatever is crucial yourself, and raise flags with your doctor when things change.
Don’t forget to share the information in your notebook with others (if your family member approves, of course).

Writing at Large

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