Planning for Uncertainty

I was big into yearly goals/resolutions before I got cancer. You can see my yearly goals posts here, here and here. They are all SMART goals, and I generally hit about 85%-90% of my plans, even during Covid times, when my mom got sick, and when I changed jobs. I set them up in such a way that even after getting cancer in mid 2021, I managed to hit almost all my basic 2021 goals and even a few stretch goals. So you’d think that what has worked for me for so many years (from 2015) and under such extreme circumstances would be something that I’d carry on with me into 2022, right?

But it isn’t. I struggled with planning ahead during treatments, and even once the treatments finished, I still find it hard to plan as I used to. There’s a new and large element of uncertainty that has taken a hold over my life, and ignoring it is just not possible. Yet not planning ahead, living day to day, is also neither healthy nor helpful, so I had to come up with a new solution to deal with my new circumstances – a way to do “softer” and more pliable long term planning.

My daily planner remains the same: a large squared Moleskine with a daily to do list on each page. I’ve tried various digital task lists in the past (Things, Omnifocus, other apps that I can’t recall right now because they are so many of this kind). As I’m working from home, it includes both work related and home related to dos on the same page.

My daily planner, customised with a Chewie decal.

My weekly planner also hasn’t changed: it’s a large squared Moleskine with the week on one page and general goals for the week on the other side of the spread (the page across from it). I find myself using it less, though, just referencing it a few times a week to get a feeling for how my week is shaping up. My day to day calendaring needs are filled by the wonderful Fantastical. I also use this notebook to track certain long term projects, although I’ve been gradually moving those to the back of my daily planner because I no longer reference my weekly planner on a daily basis.

What has been added is connected to my work on ACT (Acceptance and Commitment Therapy). ACT puts a lot of emphasis on values and goals and tasks that are tied to those values. What replaced my “yearly goals” list was a list of goals that are tied to each of the five values that I chose for myself. The goals are not time-based, they are “soft” and neither promises or predictions. They represent commitment to a valued direction, and many of them are meant to be continually ongoing. Which is why I added a “habit tracker” of sort that is inspired by “Atomic Habits” and parts of the “Theme System Journal“.

2021: Looking Back at a “Heavy” Year

My hands have been killing me with the worst neuropathy since my treatments began, so I’ve been trying to limit my typing to what I need to do for work. That is why this post took so long to write, and why my posting schedule may be a little off until things improve with my neuropathy.

2021 was a hell of a year for me. It started with me doing Liz Steel‘s excellent Sketchbook Design course. I also took some fantastic and very illuminating tea seminars with Juyan Webster from the Chinese Tea Company. If you have any interest in tea and you get a chance to have a tea seminar with her, I highly recommend it.

Early on in the year is also when a close family member got diagnosed with thyroid cancer, and that’s also when my journalling went on the fritz. This was the notebook I was using at the time, a Moleskine Pokemon Charmander limited edition and I abandoned it 2/3rds of the way through.

Abandoned Moleskine.

Covid was raging, I was working from home, at a new job, and I spent the first quarter of the year trying to fit my drawing and running into the new quarantine rules that kept getting both stricter and more confusing with each iteration. I happily got vaccinated as soon as I could, and I’m still very grateful to the amazing scientists and doctors who came up with vaccines in such a short time frame.
I managed to participate in the OneWeek100People challenge, which is very demanding but also a lot of fun. If you can spare the time I recommend giving it a try.

In the beginning of April I started having shortness of breath (dyspnea) while running. It got worse with time and soon I couldn’t run at all, and then I couldn’t walk very fast or far, climb stairs, etc. After a long and laborious road to get a diagnosis, in the beginning of June I learned that I had cancer, and in the beginning of July I got a diagnosis and started ABVD chemotherapy to treat Hodgkin’s Lymphoma.
A few things helped me get through that incredibly difficult time. First and foremost, my phenomenal family (mother, father and brother) that rallied around me and took care of me from the moment of the first diagnosis and to this day. I can’t imagine going through this process without them. Almost as important were my friends, who visited me in the hospital and cheered me up, and kept in touch and cheered me on during the treatments. Finally it was journaling and reading. I started this Moleskine “I am New York” on the day I was first admitted to hospital, and writing in it gave me perspective and kept me sane.

Journal of a bad year.

And books? Books have always been my comfort and escape. I saw a few things on Disney+ while I was hospitalized, but books helped distract me from a lot the most unpleasant and painful parts of this journey.
I was happy to discover that one of my favourite Moleskine limited edition series, the denim ones, was back in stock, and so once I finished the “I am New York” journal I moved into this Moleskine “Skinny. Flared. Bookcut.” one. It’s such a well conceptualized and executed design, it was a joy to use. This was when I decided to regularly use fountain pens to journal with, and just use only one side of the page. I have more than enough notebooks to support that decision.

This notebook took me through the second part of chemo to the end of it.

And now, and the beginning of 2022 I started a new journal, a Moleskine Peanuts Sakura. Pretty, right? Let’s hope I get to fill it with good news and positive thoughts.

A new Moleskine for a new and better year.

Some favourites from the past year:

My favourite pen was the Esterbrook Estie Sea Glass. Quite a surprise for me, but it hasn’t been out of rotation since I got it.

Esterbrook Estie Sea Glass – fantastic and beautiful pen.

Another pen purchase that came in at a close second was the Diplomat Elox Rings and the Diplomat Aero (basically the same pen with a slightly different body design). These are wonderful workhorses, and a joy to use.

Diplomat Elox Rings on the left and Diplomat Aero in Champagne on the right.

I didn’t read as much this year as last year, but I did read a few really great books. Here’s a list of a few standouts among them:

  • The Good War, by Studs Terkel. WWII as I’ve never experienced it before – as seen and told by the “regular people” who lived through it.
  • Cloud Atlas, by David Mitchell. Not an easy read by far, but a breathtaking work of fiction nonetheless. Worth the effort.
  • The Brief Wondrous Life of Oscar Wao, by Junot Diaz. A surprisingly moving tale of a character that you won’t expect to fall in love with, and yet you will.
  • Wolf Hall, Bring Up the Bodies, by Hillary Mantel. Why should I care about Thomas Cromwell? How can you not care about Thomas Cromwell after reading these books? An era and place come to life, in a world filled with complex and compelling characters.
  • Nomadland, by Jessica Bruder. Watch the movie AND read the book. Both are excellent, and both offer a chance to look into a part of modern living that we were hitherto oblivious of.
  • Project Hail Mary, Andy Weir. Just a fun and interesting sci-fi novel. If you enjoyed the Martian, you’ll enjoy this.
  • Underland, by Robert Macfarlane. What happens in the deep dark places beneath our feet? A lyrical work of non-fiction.
  • The Song of Achilles, by Madeline Miller. The love story between Achilles and Patroclus told with great gentleness and heart.
  • Klara and the Sun, by Kazuo Ishiguro. An understated and masterful work of science fiction that explores themes of humanity, identity, friendship and love, among other things.
  • Harlem Shuffle, by Colson Whitehead. How can you write a heist novel that isn’t a heist novel but rather a story of a person, a time and place? Whitehead’s writing is exceptional, and Harlem Shuffle is just another proof of that.
  • The Expanse books 1-4, James S.A. Corey. I haven’t read book 5 and onwards yet, but I did read the first four books of The Expanse this year. They aren’t perfect (Holden is a bit much), but they are very good at world-building, with interesting and unique plots and complex and believable characters (apart from Holden, who is a bit much). The books are each written in a different style, and they improve with time.

In terms of art supplies, 2021 was the year of the super-granulating watercolours from Schmincke, and also when I added Daniel Smith watercolours to my palette. Schmincke just announced that the super-granulating colours will be permanently added to their offerings, and that they are issuing three more permanent sets into this series (Desert, Shire and Vulcano), and another limited edition set, Haze.

I’ll be talking about planning for 2022 on one of my next posts. In the meanwhile, have a great new year, and don’t forget to take time and breath.

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.

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. 🎉🎉🎉

Weekly Update: Chemo and Klara and Ink, Oh My

I am trying something new here, to see if I can start using this blog to update on what’s going on with me plus as an accountability aid. Let’s see if it sticks.

Health

I spent the week recovering from Chemo number 8. I started the week with muscle aches and pretty strong neuropathy that made typing and writing a real pain, but by mid week the muscle aches subsided and the neuropathy, while still with me, is much less sever. Next week is Chemo number 9 out of 12. Getting into the home stretch, but the side effects are getting more pronounced. I no longer try to work on the day of the Chemo, and I may need to take a day off on the day after as well, but we’ll see. Next week I also finally get to see a psychologist at the cancer treatment centre. I’ve been on the waiting list for two months, so I really hope our appointment will go well.

Reading

I finished Kazuo Ishiguro’s fantastic “Klara and the Sun”. Not a breezy read and a very typical Ishiguro book, but I enjoyed his treatment of AI and humanity in this novel. It starts slow, and builds up a world and an atmosphere like few writers can. Highly recommended.

Started reading Hilary Mantel’s “Bring Up the Bodies” and will likely also start reading “Cibola Burn”, the 4th Expanse book by James S.A. Corey. Mantel is mesmerising as usual, but a bit too demanding to read during Chemo. That’s what “Cibola Burn” is for.

Writing

Got some writing done on my non fiction project, although not as much as I would have liked. I’m still writing in my notebook so I’m not counting words, but I estimate I got about 5 pages of writing in. Not great, but better than nothing, especially considering the material involved. I’m also considering picking up work on a novel that I stopped working on once the pandemic hit. I’ll have to rework the premise quite a bit, but I believe that the core of the story still works.

Currently Inked

I wrote my Diplomat Aero Champagne fine nib pen with Sailor Studio 123 dry this week. I really enjoyed the pen and the ink, so I think that they’ll be back in rotation pretty soon.

From left to right: PenBBS, Kanilea, Esterbrook, Retro 51

The PenBBS Year of the Ox pen and the Kanilea pen have been my journalling pens this week, with the first being filled with Pilot Iroshizuku Ina-Ho and the second with Diamine Earl Grey, both wonderful shading inks. The Retro 51 Monarch has a stub nib and is filled with Caran d’Ache Saffron, and the the Esterbrook Estie Sea Glass is filled with Diamine Jack Frost. Both are in use for my “Three Good Things” entries.

How I Use My Notebooks: Daily Planner Update

I last posted about my planner and to do list setup here. To recap, my planning system includes two large Moleskine hard cover squared notebooks, one in which I plan my week, and one in which I use as a daily to do planner. I started using this setup once Covid hit and I started working from home. It worked very well for a year and a half.

Then I got cancer.

I was hospitalized for a month, in which I discovered that I have zero control over my time or how my day will shape out. When I got out I was already on a Chemo regiment. I had to make adjustments to my life, this time because of my personal health, not a global pandemic.

Score (another) one for self-made planners.

My old system was generic enough that it fit into my new lifestyle with very little adjustment. The weekly notebook stayed mostly the same, as you can see below. The main difference is that I manage less stuff there and more using reminders in Fantastical. It’s not that I don’t like paper planners any more, it’s just that Chemo Brain is a possible side effect of my treatment and I don’t want to risk not getting something important done because I forgot to check my weekly planner at the right moment, or I saw something there but didn’t remember it after I’ve seen it.

So why keep the weekly planner at all? Because it helps me see how the week is shaping up, and because it allows me to do a little long term planning, despite everything. All my plans at the moment are in two week batches (dictated by my chemo regiment), and this layout allows me to manage them.

Another addition to this notebook is a few tracker pages, marked by tabs. Some track purchases that I’m waiting for, some track bureaucracies that I need to take care of, others list things that I want to get done eventually but I haven’t decided yet when or how.

As for my daily planner notebook, I just finished one and started another. Here’s the finished notebook:

Moleskine Large Hardcover squared with a Star Wars The Last Jedi decal on the cover.

Here’s the new notebook. I love using these decals to make these notebooks my own:

Moleskine Large Hardcover squared with a Star Wars Chewbacca decal on the cover.

I used to manage every day on a full spread, with personal to dos on one side of the page and professional ones on a another. Since my life is less busy now than it used to be, I’ve downsized my to do to one page per day, with personal and professional mixed in (I work from home). This is a sample of my least busiest day: it’s a chemo day and I wasn’t planning on working after this treatment since it was a long one. Door to door I was in the hospital from 6:40 to 14:00, and completely wiped out after it. I don’t usually list my meals or naps in my notebook, but chemo days are so crazy (in terms of what my brain does on steroids) that I have to write everything down. Things that I didn’t do get a strike in them and are moved forward to another day.

Everybody has different needs from their planner, and those needs oftentimes change unexpectedly, and out of sync with “planner season”. It’s one of the reasons why I find making your own planner, working just a few days or a week or two ahead is the best and most consistent way for me to manage my time. There are some great planning systems out there, but if you’ve struggled with using them, or if your circumstances make you need a very flexible system, I highly recommend picking up a squared or lined notebook and creating your own.

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.

Yom Kippur 2021

I had a strange Yom Kippur this year, as is to be expected. I decided to commemorate it in my sketchbook, this time using Faber Castel Albrecht Durer watercolour pencils in addition to my usual Schmincke and Daniel Smith watercolour mixture.

Drawn on a Stillman and Birn Alpha. Ink is Iroshizuku Ina Ho (lines), Robert Oster Fire and Ice (heading and text) and Sailor 123 (2021).

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.

How I Use My Notebooks: Three Good Things

I’ve been going through a rough time lately, and as many people have been so kind to say, staying optimistic despite all the bad things that I’ve had to deal with lately is key to getting through this terrible time. That is, of course, easier said than done. My mind tends to latch on to the painful and scary parts of the day, to the bad feelings, anxiety and doubt. It doesn’t help that we are all living through difficult times, and it’s hard to see and end in sight.

So I’ve started a new habit during the past month, and it’s helping me end the day on a positive note, with an added bonus of helping me use up some of my many notebooks.

I end each day by writing at least three good things that happened that day. I dedicate a page for each day, in my Dingbats notebook, with “Three Good Things” as the title, the date and day, and then the list of good things. It doesn’t take more than a few minutes to find that day’s three good things, and for most days so far I’ve managed to find more than three good things to reflect on. They are usually conversations that I had with friends, or moments where I felt like my old self, or things that I enjoyed reading or watching.

Writing these down has been so helpful in getting me to see the good in each day, and in trying to stay positive when life is pretty tough.