Weekly Update: Winter Cats and Yayoi Kusama

We’re still not getting a real winter yet, but I did get some new Rumpl blankets in this week and that was enough to get my cats into full winter mode. Hopefully there will be some rain next week to justify their need for winter cuddles.

The gentleman.
The lady.

I dared to venture out on the day before my Chemo session, because I really wanted to see the Yayoi Kusama retrospective in the Tel Aviv Museum of Art. I arrived when the place was relatively empty, and wore a mask the entire time (as did almost all of the other visitors). The curation of the exhibit was phenomenal, and I enjoyed it very much. I loved seeing Kusama’s early sketches in her sketchbook, as well as her later sculptors and rooms. There was a new room, created specifically for this exhibit, the “Galaxy” room, which was my favourite:

Inside the Galaxy room.

Walking through the museum became a very colourful and oftentimes surreal experience. There’s nothing like being dwarfed by pink tentacles:

Pink tentacles in the atrium.

The penultimate room was phenomenal, with a steel ball exhibit on the floor that toyed with people’s need to view themselves (so many people lay down on the floor to take selfies), and two mosaics of Kusama’s paintings: one colourful and one in black and white, on opposite walls. It was very striking.

With my treatments getting progressively harder, flu season (yes, I’m vaccinated, but that doesn’t necessarily guarantee that I won’t get sick), and a new Covid variant on the rise I doubt that I’ll be going out much for the next few months. That just makes my visit to this colourful, interesting and joyful exhibition even more precious to me.

Health

I had my 10th Chemo treatment (the second treatment of the fifth cycle) on Tuesday, and this time I asked to get less steroids. So instead of a really, really, really, really, really large amount of steroids, I was given a really, really large amount of steroids. It was a risk (the steroids serve as anti-emetics and general boosters to help me get through the treatment), but so far it has paid off. I could sleep better and longer after the treatment, which helped me feel a little better. The treatments are getting harder, and as I suspected I now no longer have a break in my neuropathy. As I’m typing this, I feel about four out of ten fingers. The secret to typing like this is to be like Wile E. Coyote and not look down or think about typing as I type 🙂

Reading

I got less reading done than I expected this week, and I’m only about a third of the way through James S.A. Corey’s “Cibola Burn” (the Expanse #4). I also need to dedicate some time to update my Goodreads reviews. I have a few notes on books that I’ve read that I’ve yet to publish there. Luckily my reading journal is still around to help me keep track of things.

I’m enjoying the way that the Expanse novels unfold, with 3-4 viewpoints in each one, and large systems of government, military and industry are made human without being overly simplified.

Writing

I journaled a lot this week, but other than that I didn’t get any writing done. My neuropathy meant that holding a pen has become virtually impossible since Thursday evening. I really miss holding and using my pens.

Currently Inked

I’ve been focusing on my standard pens this week (while I could still hold them). The Retro 51 Typewriters have Monteverde gel ink refills installed, and I’m really enjoying them (I don’t like the standard Schmitt refill). The Karas Kustoms Periwinkle Bolt V2 has a dragonskin grip and a cerakote finish and is gorgeous. The other Bolt is the steampunk one, which I love and use regularly. The Tactile Turn Nautilus is the most unique and gorgeous of my standard pens, and the click mechanism is a lot of fun to fidget with. The Uni Jetstream Edge was a pen that I wasn’t expecting to enjoy very much, but I ended up writing the most journal pages with it this week. I can’t explain why I love writing with this pen so much, but I just do. The same can be said of the Pilot Hi-Tec-C next to it, which I’m about to run dry (a pen achievement, if ever there was one). The barrel is cracked, of course, but somehow the tip has remained intact and the gel ink refill hasn’t yet inexplicably stopped flowing.

From left to right: Pilot Hi-Tec-C, Uni Jetstream Edge, Tactile Turn Nautilus, Karas Kustoms Steampunk Bolt V2, Karas Kustoms Periwinkle Bolt V2, Retro 51 Typewriter green, Retro 51 Typewriter copper.

Other Things

I’m hoping that my neuropathy improves next week, so that I can get back to journalling. I’ve started working on some long term projects and with the encouragement of my therapist I may actually get back to planning more than two weeks ahead.

The seeds in my garden have started germinating, which is always a joy to see. Monday is going to be very dry and warm so I’ll have to keep a look out for their health and mine then.

As is usual for a Chemo week, a lot of my time was spent trying to fall asleep and failing, so productivity wise it’s not the best. Hopefully next week will be better.

Weekly Update: Shots and Lego

The weather started to improve this week, and with it my health. The winds from the East stopped blowing dust in, and the terrible heat and dryness broke, hopefully until summer next year. It finally started raining on Thursday, and as the weather cooled off I could start to clear out and replant my container garden.

Health

This week was the “good” week (i.e. the no Chemo week, where my body gets to recover), even though Sunday and Monday had super hot and dry conditions that made breathing miserable and made my nose bleed (a problem when you’re on blood thinners, as I am). But the weather improved and I started feeling better as I made up for lost sleep and the neuropathy started to gradually subside.
I also got a pneumonia vaccine (I’m eligible because of my Chemo trashed immune system), and another shot to keep my blood count where it should be. I used to be afraid of shots and blood tests when I was little, and leery of them as an adult, but now they’re nothing to me. I’ve been pricked and prodded so many times that I’ve gotten inured to the procedure.

Next week is Chemo 10 of 12, and also when I start scheduling my post Chemo tests.

Reading

I finished Hilary Mantel’s “Bring Up the Bodies”. I couldn’t put it down, so I ended up reading it during Chemo instead of starting on something lighter. She really makes Henry the VIII’s court come to life, and Thomas Cromwell is such a fascinating character in a book filled to the brim with fascinating characters. I’m a bit wary about reading the last book in the trilogy, “The Mirror and the Light,” as I’ve been warned that it’s not as good, but I will probably read it eventually.
I started reading James S. A. Corey’s “Cibola Burn” and so far it looks like a fun and engrossing read. They really know how to write entertaining epic science fiction that highlights how the various modern “tribes” of humanity work and how individuals interact with them.

Writing

My neuropathy started improving on Wednesday, and so I could backlog the journalling days that I missed. Hopefully I’ll get more writing done this week, but even if I only journal that will be OK considering the condition of my hands and the fact that I need to type with them as I work every day. Sometimes you need to cut yourself some slack.

From left to right: PenBBS, Retro 51, Esterbrook and Leonardo

Currently Inked

I wrote my Kanilea dry. I really enjoyed using it, although I still believe that Kanilea pens are overpriced beauties. I bought my pen second-hand on the Pen Addict Slack, but as the message was archived and the pen that I got is no longer made by Kanilea I have no idea what its name is. That’s something for me to figure out.
I wasn’t planning on adding a pen to the rotation, but my Leonardo Momento Zero Grande Mother of Pearl arrived and it was too pretty to sit in a box until I got to it. I was feeling nostalgic so I filled it with Waterman South Sea Blue, a really great and inexpensive ink that has now been renamed to “Inspired Blue” which is not a very descriptive or inspiring name.
Also in rotation: my Esterbrook Estie Seaglass with a Journal nib, filled with Diamine Jack Frost. This pen and nib combination is so much fun to use I may return it to the rotation for a third time in a row once I’ve written it dry.
The Retro 51 Wings of the Monarch fountain pen with a 1.1 stub nib filled with Caran d’Ache Saffron. The pen drags a little as it writes so I may try to smooth the nib out once I’ve written it dry.
PenBBS Year of the Ox, a trusty, workhorse writer filled with Pilot Iroshizuku Ina-Ho.

Other Things

There was a local shopping event two weeks ago, and I went a little wild buying Lego sets. I’ve started building Legos as a way to relax and clear my head once I go sick, and they’ve been quite a comfort during the past few months. I can’t build them on days with bad neuropathy, but on good days they really cheer me up. I’m working on the Hogwarts Icons Collector’s Edition right now, and Hedwig is absolutely stunning.

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.

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.

I Have a Tumour

I debated whether to write this post or not, and whether to write it now or wait for later, when I know which tumour I have. In the end I decided to start a post and write what comes out, and not try to overthink it.

I have a tumour in my chest cavity (mediastinal). Back in February this year I was forced to stop running for about two months due to a rather serious bout of Plantar Fasciitis. Due to Covid restrictions I had delayed replacing my insoles, and this was the price pay. After two months of rest, stretching and a course of anti-inflammatory pills I felt better and in the beginning of April I started running again.

Or at least I tried.

I had shortness of breath once I started, to the point where I had to stop running a few times during my run. I thought that it was due to me not running for almost two months. But the runs after that first one didn’t get better and after a few more I went to the doctor.

My GP said that my lungs were clear and he couldn’t hear anything. I told him that I was wheezing at night (at this point I was), and that I found running impossible and walking increasingly difficult. He said that it was a virus that was going around, and prescribed something to help with congestion. It was a 10 day course of tablets, and it did nothing to help with my shortness of breath or my wheezing and coughs.

I knew that something was seriously wrong, and thought that at the age of 39 I may have developed asthma. At this point it was time to fly to London, so I took my mother’s inhaler and went on the trip. I have no idea how I made it through 13-15,000 steps per day for 12 days there, but I did.

Once I returned I went to see my GP again, this time demanding a referral to a spirometry test and and to a lung specialist. Last Thursday I took the spirometry test and the results were abysmal. I had 35% lung capacity, and I scared the technician enough that she tried to do everything possible to get me to see a lung specialist that day. She didn’t succeed but my family managed to book me a to a lung doctor that day. He said that it wasn’t asthma, but he had no idea what it was. I needed to get a CT done.

I took a spirometry test at 13:40. I saw a lung doctor at 16:30. At 18:30 I had a CT angio done (my first CT ever). At 19:10 I had the results in my inbox.

A large mediastinal tumour. Possibly lymphoma.

Me, a healthy, non-smoking, non-drinking, physically active 39 year old.

I was admitted to hospital on Friday, and had a series of tests done, including a super painful, super traumatic biopsy on Sunday. I was released home for a few days of rest on Tuesday, and now, Saturday night, I’m back in hospital waiting for my very first PET CT on Sunday morning.

The hospital

I have no idea how I’m coping. For now I’m in a cloud of uncertainly and with zero control over my life as a phalanx of very good doctors try to figure out exactly what we’re dealing with here. It’s a tumor for sure, the question is which kind exactly. I’m moving around in my life as if it is someone else’s.

I’m back to journalling, after a break due to my mom’s health problems, Covid and several other personal issues. Recording everything as it happens has helped me deal with things. Analogue tools are still best for processing, and even though I would have loved to luxuriate with a Parker 51 on some Tomoe River Paper, I know the practicalities of hospitals enough to use a Karas Kustoms Render K with my favourite refill (Uni-ball UMR-85) and a Moleskine instead.

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).