I’ve had a very nice meeting with Dr. Cusnir this week and told him about my weird abdominal pains. Turns out the symptoms I was describing point to a very common side effect of abdominal surgery called Abdominal Adhesions. These are very fine strands of tissue that stick together where usually it wouldn’t, a bit like if you put chewing gum between two pages of a book. Try to separate them and you can imagine what adhesions look like.
They often form in between the free flowing part of the small intestine, which then tends to get mildly (or severely) obstructed, which would tally up with my experiences of light sweat, nausea and severe pain. Sadly I’ve had this one too many times to ignore, and I have reason to believe that I’ll need further surgery to get rid of these adhesions.
However, therein lies the problem: surgery is really the only option to cut these buggers up and remove the problem, but it also then creates an “opportunity” for future adhesions. Hence doctors don’t recommend surgery as the first and only option. Dr. Cusnir said that if I can manage it somehow, it might be wise to avoid surgery. I’ve been doing just that over the last few weeks: I’ve reduced my portion sizes to go super easy on my digestive tract, I’ve eaten a lot less, and it resulted in me being several pounds lighter (195lb was the lowest I’ve weighed, which is a good 5-8lb lighter than my usual weight). While weight loss sounds great, it’s not a sustainable solution to my problem.
This evening after a bit of cereal and a slice of bread, I’ve had a severe episode as a result and thought I’ll make a note of what foods seem to be working for me at the moment:
soft stuff like mashed potatoes and fish
bullion
cereal (if it’s a small portion of around 1/2 cup)
soup
Dave’s Killer Bagels (half)
honey, chocolate spread and butter
scrambled egg, fries
What doesn’t work so well:
anything with large amounts of fibre (like sprouted bread)
vegetable-heavy dishes
cheese and yoghurt (I guess its bacteria may cause gas that gets trapped)
I’ve also had nasty experiences with my beloved Vega protein shakes with coconut milk, but only once when I had it with a yoghurt. I’ll give it another shot tomorrow and see if it might work for me. My immediate problem is that I can’t continue to east as little as I do forever.
The Action Plan
On the 6th of March, I have a CT scan scheduled. It probably won’t show any signs of the adhesions due to their thin size, but it may give an indication of potential obstructions. I’m due a colonoscopy and will make an appointment with my favourite colon surgeon Dr. Szomstein to discuss after the scan. It’ll be great to see him again, and I’m sure he has some advice on how to deal with this.
Until then, I’ll stick to my “small portions” and “mainly fluids” diet with the intention of avoiding further pain. Something else that’s worked wonders are the Queasy Drops by Three Lollies. We found out about them during the chemo years, and they are fantastic to combat any feelings of nausea. Well remembered, Miss Julia!
While I hadn’t quite expected it, there may be some follow up surgery on the cards for me this year. I’ll keep you posted!
I keep forgetting to put this down, probably because I’m always glad when an episode is over, but for the last few months, I’ve been suffering from bouts of abdominal pains. They don’t often seem related to food intake, even though my digestive system is somehow involved.
The earliest episode I can remember dates back to when I was kept in Baptist hospital under observation, around December 2016. My whole system was screwed up back then, and I wasn’t eating solid food, but one evening it came out of nowhere and didn’t want to end. It was so strong only a dose of morphine stopped the pain. I was extremely grateful that it did, and I haven’t had anything like it until perhaps a year ago.
I didn’t make a note of the date, but I remember it was during the night. We had eaten may hours before, and sometime around 3am I woke up and had this dull pain that stretched from the waist up to just above my belly button. It doesn’t quite extend to the sides and seems to be focused in the centre. It’s that type of pain that has kept coming back more frequently, and not just at night.
Today is a great example, which is why I thought I’ll make some more detailed notes. I woke up and had a protein shake with coconut milk at around 9am, like I often do, and have never had any issues afterwards. Around noon, the episode started and got gradually worse over the next 20 minutes. We had a walk to see if it would help, but moving around only aggravates whatever this is. Around an hour and a bit later the pain began to fade and took another hour to dissipate completely. I had no other digestive issues, like heart burn or erratic bowel movements, quote the opposite.
Around 8pm we had dinner, which consisted of a tomato salad with tuna and a bowl of chips (i.e. oven fries), something I’ve had countless times before without issues. Like clockwork, an hour or so later the same abdominal pain started happening, not quite as strong as in the morning, but definitely enough to make me think of having some ibuprofen (which I didn’t take in the end).
It feels like I have some food trapped somewhere and it can’t get through, much like it felt before my sigmoid colon tumour was removed. That was much lower down than this, and I could literally feel the place of congestion, unlike here, where I can’t locate anything like an obstruction. While today it appears to be directly related to food intake, it hasn’t seem like that on many previous and especially nightly occasions. Those episodes appear many hours after we’ve eaten, so this thing can come at any time and can be kicked off pretty much unannounced.
The last episode before today was last week, and as a result I abstained from any food the next day until the evening. It worked well and didn’t come back, until today. I’ll start making posts if and when it happens again to keep an eye on the frequency, which has definitely increased over the last year. As a guess, these things seem to happen about once a month, and have now increased to once every two weeks, perhaps more.
Sometimes, like today on both occasions, the phenomenon is accompanied by mild sweat on my forehead.
The week before my 50th birthday I had some weird tooth issues I thought I’d make a note about. It’s great having a place to do this on actually, as it build a timeline of how things are going with my body. It started after I ate some of those small carrots as a snack in the evening while binge watching Line of Duty with Julia (great series that).
The day after I’ve noticed severe soreness on my bottom right molar, as if something had got stuck between tooth and gum, but different. I made sure to clean all gaps as I usually do and didn’t find any evidence of festering carrot pieces. A day later the pain got worse, enough for me to consider Aleve to get through the day. What made it worse was that the top right molar was also hurting a bit, something that can’t be explained with the carrot piece theory.
I now know that something underneath my bottom molar must have happened that seems to have pushed the tooth up slightly, perhaps as much as 1mm although it was probably less than that. Julia tells me that I have a tendency to grind my teeth overnight, something I wasn’t aware of until now, but it would explain why the elevated molar from the bottom would have affected the one above it.
This has been going on for almost a week, and finally the bottom molar has come down again into its previous position, or at least almost. I can bite down again without the top molar complaining (well almost at least), and there’s no more sensitivity around the bottom gums.
However, I’ve now noticed that the outside of the bottom molar doesn’t seem to be covered in gums anymore: it looks severely receded, much further than on the other side of my mouth. As a result, the exposed bit of the molar is now extremely sensitive to temperature change. Cold tap water is agonizing, as is a draft of air if I inhale the wrong way through my mouth.
I’m hoping that this will just go away over time, it’s only been a week (again which is why it’s so important to make these notes and have time stamps of incidents). Right now I’m using Colgate toothpaste for sensitive teeth and will keep an eye on the situation. Julia suggested rinsing with warm salt water. I’ll report back should the situation not improve.
Colonoscopy
I really need to book in that colonoscopy and an appointment with Dr. Cusnir afterwards. Dang! The year is nearly half over, where does the time go?
On a positive note, I’m really busy with projects and determined to finish those up this week. I’m very aware of my limited time on this planet, and I’m trying my best to put as much as I can out there while I can, while also making sure that I fare well as I do it. Things take much longer than I’d like them to. But I’m trying hard to fit them all in.
I forgot to mention some weird abdominal pain I’ve had last week, I’ve had this before so it felt vaguely familiar. It must have been last week, perhaps Wednesday or so.
I started to feel a numb pain from below my rib cage to about just under my belly button. I couldn’t quite make sense of it as it didn’t seem to be related to what I’ve eaten, nor did it feel like there was something stuck in my gut somewhere. I may have been nothing, or perhaps I just hadn’t drank enough. All I can tell you is that it felt seriously uncomfortable.
I’m bringing this up because I’ve had the same pain a few months ago and didn’t make a note, yet it felt very familiar to the pain I had once in hospital: same area of my body, but back then it was so severe that only a shot of morphine could stop it. It’s not been back since, just these two times.
Like last time, this pain took a while to shift and didn’t react to Aspirin. It started during the afternoon and became stronger towards the evening, stayed with me throughout the night and into the next day. It was slightly better in the morning and eventually went away. I did find that some positions while lying in bed were slightly more tolerable than others.
The next day I had a headache, which may or may not have been related to caffeine withdrawal. Two aspirin made it slightly better. I don’t recall anything else about the abdominal issues, just wanted to make a note here in case in happens again, and at what intervals.
Here’s a little presentation I have at the 3rd Annual Oncology Symposium. It’s been postponed a few times and finally happened on the 2nd of October at Margaritaville in Hollywood. It was fun to be back and talk about my case, and see so many familiar faces again. The event was much bigger than in previous years, with 45 exhibitors and over 100 attendees. Success!
The feedback I got from the audience as well as YouTube comments was wonderful and heartwarming, and I can’t quite believe it has been 4 years almost to the day that I’ve been declared officially cancer free. I love being able to commemorate the occasion in style.
Julia and I helped out with the AV tech on the day, making sure the presenters had access to their slides and all other materials we needed for the day. Like last year, I brought along my streaming PC and transmitted the event live on YouTube. We had a viewer from France who was into T-Cell research and he enjoyed the many topics that were discussed. You can watch the whole stream here, it includes time-codes for all speaker segments. I’ve also split out all presentations and uploaded them to our dedicated Oncology Symposium channel, alongside last year’s presentations.
I’ve just had my 6 month check-in with my oncologist Dr. Cusnir. Like all hospital personnel, he’s wearing a mask and scrubs. Last time we met it must have been 9 months ago or so, in between which I had a remote consultation with Karen, so there were no masks required. Scrubs are a new look for him, I’ve only ever seen him in a suit and white coat before, but apparently it’s now hospital policy.
We were both extremely happy to see one another. I’m doing great, and he agreed with my self-diagnosis (even after properly examining me). I’m currently on a 6 month schedule, so the next time I’ll see him will be in September. Before then I’ll have to get a new CT scan to make sure things look handsome on CD, and a colonoscopy with Dr. Szomstein. My original plan was to do this at the beginning of the year, but since the appointment is a bit later, I’l push it into the summer. It’ll be great to see Dr. Szomstein again too.
After reviewing my blood work, Dr. Cusnir renewed my Synthroid prescription. Up until now I was on a 30 day rolling refill, but since my 150mcg dose has been stable for so long, he’s given me a 90 day refill. I didn’t know this until I got to Walgreens to collect it. I nearly fell over when the pharmacist told me it was over $100, thinking that my monthly refill is usually about $36. Turns out I now have a bottle that comes straight from the manufacturer, rather than the orange one that’s filled by the pharmacist.
This new type of bottle, and the very spaced out appointments really drive home that I’m in a completely different stage of of this journey. It’s post cancer monitoring rather than active treatment. My life seems back on track, and it’s going better than ever.
The Day Job
I have some news in regards to my job at the supermarket. Ever since March 2020, I was officially “off sick” with a certificate from my doctor stating that I shouldn’t work in a crowded space and risk contracting COVID. Instacart kept me on the system, so should the situation change, I could have started working again if I wanted to. That’s a good deal.
Recently the company have announced that they’ll discontinue in-store operations in Florida, which means my whole job won’t exist any more after June.
While that’s very sad on the one hand, it doesn’t really matter all that much for me. I’ve always seen my YouTube/online ventures as my “real full-time job”, and it’s going better than ever. Julia and I had been calculating that lately, these ventures make as much as me working for Instacart anyway, with the added benefit that doing YouTube is more fulfilling for me than packing groceries while watching a timer on my iPhone. I had been fully focussing on this venture since I stopped working in March, and I haven’t regretted it. I’m busier than ever with plenty of exciting projects and ideas to explore.
Nevertheless, it feels a bit like the end of an era for me, and also as if The Universe has made the decision for me of seeing my online ventures as a side gig or the “main course”. It’s remarkable how fluid these things can appear.
Website changes
While we’re on the subject of things changing, I’ll have to tweak the design of this website. Currently (April 2021) I’m using the Divi theme from Elegant Themes. It served me well when I wanted to put this site together, but it requires a $40 annual subscription to receive updates. It’s one of three sites I use this theme on, and I must admit that it’s slow and feels bloated. The site takes over 10 seconds to load, and that’s not because I’m using a slow server.
My plan is to bring it in line with my other two main sites, visually as well as in regards to functionality. Under the hood, these sites use a different premium theme (GeneratePress), they perform faster and look much nicer. Over the coming months I’m planning to make the change, which will be a week of coding and inconsistencies – so apologies in advance. It is for the better, it will streamline my online life and will also make it cheaper.
I feel that it fits right in with marking the occasion of changing into a different chapter.
As always, thanks for reading, and thanks for taking an interest in my journey.
About a month ago I wrote that I had something called kaleidoscopic vision, also known as an ocular migraine. It literally came and went without any repercussions or actual pain. It was just a weird experience, and it had me worried because I’ve never experienced it, nor did I know what it was until we researched this effect. Today at around 9:10pm EST it happened again. Just like before, it lasted for just over 20 minutes and disappeared as if someone had flicked a switch.
This episode was somewhat milder than my previous one. I had about a quarter of zig-zag vision in the top right corner of my vision, unlike last time where it seemed to be in a 360 degree circle. This time it only covered 90 degrees. After about 10 minutes, the zig-zag patterns had shifted further outside, into something of a stretched line. There was less colour involved than last time.
I suppose knowing what this is means there’s less immediate panic, however I do worry that this thing has come back in such a short interval. I’m due an eye exam anyway, and my primary glasses have lost a node pad on the right hand side, so I’ll make an appointment with Dr. Shapiro at Four Eyes soon and tell him what happened. Doctors like notes, that’s why I’m taking them.
What may have changed since last time?
Symptoms aside, it might be an idea to note any lifestyle changes that have happened recently, and/or since last time this occurred. I can’t think of dietary changes, and I’m still drinking mostly decaf (with an intake of 30% caffeinated at the most, if at all). I sleep OK, except for perhaps list due to heavy rain. I decided to get up at 4am and do some editing, then go back to bed at around 7am.
I have been streaming almost daily though, with two shows at weekends. It’s fun and fulfilling, very productive and I surprise myself with the 3D projects that are happening as a result. The setup in Studio C isn’t great (aka the linen cupboard), but it’s working. I do utilise my old glasses there though, which I seem to remember are over-correcting my vision a bit. i don’t have any headaches, but due to increased streaming activity, I do wear them more than usual. Perhaps it’s related, perhaps it isn’t – I wasn’t streaming this much when the first incident occurred.
I’ve just had an interesting experience while watching TV (The Mentalist, season 1, episode 2). It’s something that appears to have been Kaleidiscopic Vision. Here’s how I’ve described it to Julia, trying to work out how this thing came about: my peripheral vision was fine, so was the centre of my vision, but there were two circles around the centre that were flickering like small sticks, in all colours of the rainbow.
I was trying to work out if this phenomenon appeared in one eye or on both, which was a little tricky as the image I was seeing was an amalgamation of both eyes. Closing either one of them revealed that it did not make a difference, so bizarrely it was happening on both eyes. This in turn seemed to suggest that it was not eye related, but rather brain related. In computer terms, the visual processing happens after signals are being received from both eyes.
Closing my eyes did not seam to have an impact as the little rainbow sticks kept dancing in a circle in the dark. There were no accompanying symptoms like a headache or migraine, nor did I feel dizzy. I had a crazing for salty snacks if that’s a symptom, which I duly squashed with a handful of cheesy Chex Mix.
A quick web search revealed the possible name for my experience: Kaleidoscopic Vision. While it could be related to something more serious, the articles suggest it’ll disappear within 30 minutes. And right they were: it occurred about halfway through that Mentalist episode, and disappeared about 10 minutes into the next, rather rapidly I might add. as if someone had flicked a switch.
Although causes may vary, one article suggested this may be related to caffeine withdrawal (which I’ve had recently), as well as hyper stimulation. That too is true: having had my head buried rather deep in two complex 3D programmes yesterday (CLO and Marvelous Designer), while dealing with a bit of web server administration. Today I was involved involved in the production of a complex YouTube video about something called the Filament Render Engine in DAZ Studio. Am I using my brain too much perhaps?
I took two aspirin just in case this thing would turn into a headache, a trick I’ve learnt from my dentist Dr. Oliver, after he removed my wisdom teeth: Rather than wait for the pain, take pain killers before the onset and things will be much more tolerable. Just in case.
I’ll see how this thing pans out. The phenomenon is gone for now, but I thought I’d make a quick note here to have a sequence of events and a little context. I’ll keep you posted if it happens again, or in fact if anything else health related is happening in my life.
I’ve had an interesting experience with myself last week: I switched to decaf, after having caffeine creep into my coffee consumption more and more recently. After my treatment, I abstained from caffeine for a while, and eventually added a spoon of caffeinated coffee into my own special mixture I’d like to call “third-caf”, made up of two spoons of Folgers decaf and one spoon of Bustelo. I really liked the taste.
my coffee stash – I don’t like running low, it’s a real luxury for me
Over time, a second spoon of “real” coffee crept in, and over the last three months or so, I found myself on fully caffeinated Bustelo again. It’s the only vice I have left, and I didn’t see it doing any harm to my system, nor did I receive any adverse messages from my body. Until last week, when I had a full pot of decaf.
Julia doesn’t drink coffee, because of the caffeine, but she does enjoy the smell of a fresh cup of Joe or a newly opened pack of coffee. With decaf, she even joins me for a cup sometimes (otherwise she’s more of a decaf tea person). I liked the pure decaf taste, and also didn’t think it would do anything adverse.
Then however one of those numb non-localised headaches came to visit me. Those you can kind of live with, but life would certainly better without. Many familiar with this phenomenon will quickly recognise it as caffeine withdrawal syndrome. Apparently it’s caused by an increased amount of blood going to the brain, or rather the “normal” amount of blood going to the brain.
Caffeine has the bad side effect that it actually restricts blood flow to the brain, causing a kind of “controlled stress”, with the effect of us being more alert. That’s why we like it so much. As we indulge on caffeine, our body gets used to it, as we get used to its effects. When we stop taking it, our body needs to get used to that lack of stress induction first, which can cause a whole host of effects in some users:
headaches
anxiety
depression
difficulty to concentrate
flu-like symptoms
fatigue
There is of course a scale to this phenomenon, and mine was a very mild case, yet strong enough to make be aware. A few days of complete coffee abstinence followed, and now I’m back on the full decaf (which depending on where you get it from, and how strong you brew it, still contains a small amount of caffeine; I remember a Starbucks’ decaf [on the slim chance they actually have one brewing] is strong enough to make me feel the caffeine).
I’m telling you all this because today I tried to smuggle a spoon full of caffeinated Bustelo into my daily mix, thinking what a nice treat the flavour variation might be. And while I enjoyed that taste indeed, the caffeine effect wasn’t working for me. It’s fairly new behaviour for me to react immediately and honour that feeling in my body by pouring out that Thermos and making myself a fresh pot of 100% decaf.
Back in the day I would have just “started doing that tomorrow” and continue drinking the mix I had readily available, suppressing my feelings with thoughts like “don’t be such a wuss and get on with it, you’ll be fine”. Every addict knows that voice. The real power is in breaking it there and then, and NOT continuing with current behaviour and acting immediately. That’s what puts you in charge, and that’s what makes a change and a difference.
So yes. I’m back on the decaf, and I’m proud of being aware of what just happened there 😎
I had an email from the friendly folks at ConvaTEC (or rather Ostomysecrets), purveyors of fine ostomy supplies and apparel. I’m still on their newsletter ever since my ostomy days so I still get updates on their news. Although I no longer have a need for those supplies, I really like the occasional reminder of what I needed during my ostomy time.
Every first Saturday of October is the worldwide Ostomy Awareness Day, and 2020 marks the 10 year anniversary of this ritual. I had no idea until literally this year.
As such, the whole month of October is classed as Ostomy Awareness Month, and CovaTEC had these t-shirts in stock for $5 plus shipping. I couldn’t resist and bought several, both to support the project, and to send to friends around the globe so they can celebrate with every current, co- or ex-ostomate in style.
October is a special month for me in regards to ostomies: I had my colostomy successfully reversed and turned into an ileostomy in the month of October. I had it for 9 months by that point, my hernia was giving me grief, and although we had always planned to reverse it, you’re never sure if that’s how things will turn out when you go in for the procedure. Lucky for me it went well, and I came out with an ileostomy. Dr. Szomstein (my colon surgeon) did this to make sure the that the lower part of the connection could heal properly.
After 10 more weeks with my shiny new ileostomy, he could reverse that too – and I am ostomy free since December 2017.
I wouldn’t have survived my journey without the two ostomies. My cancer had wreaked havoc to so many parts of my GI and urinary tract; we had to literally divert everything we could so I wouldn’t continually get infected. It was a tough time, and I remember seriously disliking the effects that ileostomy had on my body. It was far worse than my colostomy: I felt dehydrated all the time, I was constantly craving salt because my body didn’t get a chance to metabolise what I put in, and it felt like my stoma was in constant use.
At least with my colostomy, I had “quiet” periods that I could use to change the wafer in peace, and my skin could recover properly. This was not the case with my other stoma. The constant acidic leakage from my ileostomy meant that I had strong skin irritation with literally no chance for my skin to recover. I remember worrying that it might be difficult to close up the hole due to the raw and itchy skin, but thankfully that was not an issue.
While it was a nerve-wrecking ritual every morning, both of these contraptions meant that I was neither bed bound nor restricted in my daily movement routines: I could take walks, I could take relatively long bike rides, and once taken care of in the morning, there wasn’t much to worry about for the rest of the day or night – apart from empting the bag regularly and keep an eye on it. Much like with any task that seems impossible at first: if you have the right tools to do the job, dealing with the toughest tasks becomes possible.
So there we go! Let’s celebrate Ostomy Awareness Month together, with or without a shirt. Let’s think of those who are dealing with ostomies every day, patients and carers alike, and purveyors of ostomy supplies.
