Earlier this week, on the 1st of October 2018 to be exact, two wonderful people have been awarded the Nobel Prize for Medicine or Physiology: James Allison and Tasuku Honjo. CONGRATULATIONS!
These two men have more or less invented immunotherapy through their early experiments in the nineties, through which drugs like Keytruda, Opdivo and Yervoy and others are people like me survive cancer. How exciting is that?
This recognition in their lifetimes is the highest achievement any scientist could every hope for.
Remember that Finger Tingling side effect I experienced from my first chemotherapy treatment? The one caused by Oxaliplatin when I touch cold things? It seems that it’s back – in a modified and lesser form.
I’ve noticed it since the beginning of September. When I picked up an extremely chilled can of LaCroix sparkling water from our fridge the other day, my right thumb started “prickling” just a little bit. Nothing serious, nevertheless noticeable. None of my other fingers seem to notice this change, as they have done before when I was on FOLFOX between May and July 2016.
It’s strange for this side effect to creep in again, without notice, and for no apparent reason. I remember vividly asking our nurse practitioner Janet at Baptist just before the treatment began, if those side effects would ever completely go away. She just smiled at me without giving me a definite answer. I guess the truth is that nobody can predict if these strange chemo side effects will disappear, or linger for years.
Now I have my answer. That Finger Tingling Thang will last – albeit not anywhere near what it once was like when I was receiving the treatment. It’s been over two years since FOLFOX and Oxaliplatin at the time of writing.
Other than that, my wonderful home-healthcare nurse Astrid has increased my daily dose of Levothyroxine by a marginal 0.0012g. This was as a result of my latest T3/T4 and TSR test, showing that although my artificial thyroid hormones are doing a great job, there’s a tiny bit of room for improvement. They need to go a little higher yet, having been at xx until xx.
I’ve just given a blood sample at our local Quest lab on 41st Street, the results of which will show us if this increase was enough or if I need a little more of the good stuff.
I’ll let you know as soon as I know.
Other than that, I cannot help but share with you that I am extremely and wonderfully HAPPY with my current life. I have a part-time job, I’m earning a bit of cash to make those medical bills disappear, I’m meeting new people, and I’ve got plenty of time for creative ventures (such as keeping this project alive and the many other web activities I’m involved in).
This month I’ve been very active on my YouTube channel, I’ve been working on seven podcast feeds, finished the audio version of BROKEN BOWELS. August and July were just as productive, which all goes to show that, as George Costanza would say, “I’m back, baby!”
Exciting news: At the end of July, I spontaneously started a part-time job with Instacart as an in-store shopper. This means I’m spending several hours every week in our local Publix supermarket together with my iPhone, which displays what groceries our customers would like to have delivered.
I don’t do the actual driving and delivering, just whizzing around the aisles with a cart (or trolley as we say in the UK), scanning and packing the items. How exciting is that?
Here’s Julia and me together with Rudy, one of our friends who works at The 11th Street Diner. We used to be regulars here – and it feels so good to be able to do “normal” things again
After we had finished that phenomenal Waffle Combo, Rudy told us that Francesca, our waitress, also wanted to be in the picture – so we took another one. I love them both 🙂 We’ve duly posted both pictures on the 11th Street Diner Facebook Page.
Julia has been working for Instacart since 2016, first as an in-store shopper, then as a Shift Lead, and recently she’s been promoted to Site Manager. I’ve been doing it for about a month now, and I love it. Now we’re both working for the San Francisco based start-up, making sure local residents get their groceries delivered.
This job directly supports our local community, it’s fun to do too. I always liked grocery shopping and playing with my iPhone, and now I even get paid for it. What’s not to like?
Most importantly though, and almost as an added side-effect, this arrangement helps me pay off those medical debts that have amassed on our various credit cards since 2015.
The fascinating bit is both that I got the job in the first place, and that I’m actually fit enough to do this! It’s a real testament on how well I’ve healed.
Grocery shopping is physical and mental work: learning and knowing where each product is hiding in the large store is one thing. The other is to walk around for several hours in a row, walking, bending, lifting, packing, that sort of thing. It’s a great workout, but also a nice barometer as to how fit I now am. I walk roughly 10,000 steps in every shift – in addition to my regular exercise routine of cycling to and from Publix on the Bay.
Remember that this time last year, I had just about gotten better. Two surgeries and a bit of recovery time later, and I’m in a place that allows me to do this – mentally as well as physically. How exciting indeed… and it’ll certainly make our bank manager happy.
Speaking of happiness, let me point one thing that I’d like to share with you:
I am happy.
Extremely happy.
This Instacart part-time arrangement leaves me enough time to pursue all those creative things I’m doing right now (i.e. YouTubing, writing, podcasting, etc). It’s all converging into a beautiful life, balanced between paying off medical debts, feeling super fulfilled and ecstatic about what I to, all the while making the world a better place.
Is that lovely, or what? It’s an amazing reward for what I’ve been through.
I’ve just had word from my friends at Amazon that BROKEN BOWELS is now available as Paperback edition too! I’ve got my hands on an early copy in the picture. My Mum has one too, so does Jerry.
If you want to join us, head over to the dedicated book page, which has links to all local Amazon sites. There’s also a free preview available if you want to check it out first.
We all agreed that the background picture is great, but it’s too light, making the white back cover text very difficult to read. I’ve just uploaded a new version of the image, and now the background cover looks like this:
Much better! Amazon have already approved it, so all new copies will have this new darker version of the cover.
Recently I gave a couple of interviews about my case, one of which was to Cindy Goodman from the Miami Herald newspaper.
The article is about how immunotherapy is greatly changing the odds of survival for people like myself. It has a few quotes from my oncologist Dr. Cusnir in it too.
The swanky picture above was taken in March 2018 in front of the Mount Sinai Comprehensive Cancer Centre (MCCC). That’s where I’ve received most of my chemo cocktails as well as the immunotherapy (Keytruda). During 2016 and 2017, this building felt like our second home.
And guess what: the article was published on my 46th birthday – what a nice surprise!
You can read it in English or in Spanish on the Miami Herald website. And just in case those links aren’t working, I’ve downloaded both of them as PDF versions for my scrapbook too:
I had taken a couple of months off from writing, but with a new deadline in place, I’m very eager to dash for the finish line. To see where I stand and what I’ve got so far, I’ve decided to print out the whole manuscript and read it. I’ve shied away from this before because I thought it still needs too much work and it’s way too early to waste paper at this stage.
Turns out that, inclusive of the writing diary I keep alongside the main manuscript, the whole wad is about 2 inches thick and over 400 pages long. Wow! That’s slightly more than I had expected, and I’m not even close to finishing yet.
I’ve missed my first self-imposed deadline (which was the end of March 2018), so the new deadline to deliver the final draft is now the end of June. This will assure that BROKEN BOWELS can be released on the 4th of July 2018. Although completely arbitrary, I thought Independence Day would be a fitting date. You can pre-order the book here by the way.
I had a break from wiring because during the process, I decided to change the premise of the book. Or in other words, my motivation for writing has changed. I had set out to simply tell the story of my cancer years, what I went through, and how I got better. That’s an amazing story in itself. It would also serve as a nice memento for me so I wouldn’t forget what Julia and I have been through.
It was painful walking down memory lane and re-living the those moments of my cancer journey, so that’s certainly one thing that kept me away from the keyboard. But something else changed. The more I discussed my case with friends and family, the more I began to realise that a different question was becoming more interesting to me:
How did I actually survive? Both physically and mentally I mean.
To answer that question means I have to tell more about my thoughts at many stages of the journey. And for the reader to understand those thoughts and motivations, I have to tell a lot more about who I am and how I got to where I am today.
Hence I have so much more to write now!
The way I envision it at this point is that we have what I’d like to call the narrative, which is more or less how I wanted to write the book in the first place. Tell the journey and let the reader make the connections. At the same time we now have what I’d like to call interstitials, or off-story chapters that shed some light on my past and how I’ve dealt with extreme situations before. These two aspects will make for a very interesting reading experience, I promise!
As I see it now, the project is perhaps turning more into a self-help book for those who have been touched by cancer, but also for other readers who are open to the subject.
Here’s an entry in my video diary I’ve made. These are two days worth: one entry is straight after printing the 400 pages, and one is my reaction after I’ve read about half of it.
As of today, my new book BROKEN BOWELS is available for pre-order on Amazon. I’m aiming for a release date of Independence Day, on July 4th, 2018. Find out more on the book page.
The book currently has 38.000 words, which is the equivalent of 250 pages. Although I enjoy writing, it’s tough re-living the painful times in my mind and progress is slower than I would like it to be. The same goes for my video diary, which I’ve not had the guts to wade through and upload to a public outlet.
There’s so much work to be done, and with my life having been more or less on hold for the last two years, I have a lot of catching up to do – as well as present living to enjoy. I’m sure I’ll get there soon – and to hell with deadlines anyway.
I’ve recorded the above video in November 2017, shortly after I was discharged from my penultimate surgery, and just after I got the “all clear”. It’s probably a little long as a promotional and snappy opener, but it tells my whole story in some detail.
July 2015
Started exhibiting symptoms of painful urination and frequent diarrhoea. Ultrasound revealed a “mass” in my abdomen.
A CT Scan revealed an inflammation in the area that required treatment with strong antibiotics, administered via PICC line (Zosyn, Merrem and Invanz)
January 2016
Colonoscopy revealed a blockage at 15cm, mostly likely cancerous
February 2016
At Baptist Hospital, open surgery revealed a 20cm tumour, prompting a complete sigmoid colon resection and partial resection of several peripheral parts. Diagnosis was stage 3 colon cancer. Fistulas to bladder, appendix and caecum were also removed.
Chemotherapy was scheduled for April. I was given a temporary colostomy.
One week after discharge, a tennis ball sized tumour was discovered in my bladder and resected during a cystoscopy. As a result, chemotherapy was postponed by one month.
April 2016
Genetic Testing revealed that my cancer was caused by Lynch Syndrome. In addition, it was found to be K-RAZ positive and MSH-2 high. Bummer!
May 2016
FOLFOX chemotherapy was administered, but didn’t work.
After 8 infusions, the tumour had regrown to another 12cm monster while I was on Oxaliplatin and 5FU. The tumour was resected again on the inside of the bladder, however it was still present on the outside of the bladder.
The only recommended course of action was a radical cystectomy. But because Baptist Hospital could not perform this procedure at the time, we were refused further treatment and advised to go “elsewhere”.
We found Mount Sinai Hospital, who were happy to try an alternative approach, deeming a cystectomy as too radical.
July 2016
At Mount Sinai, radiation therapy in conjunction with FOLFIRI chemotherapy shrank the tumour from 12cm to 6cm.
August 2016
A fistula developed between my disconnected rectum and my bladder. As a result, I was now urinating from my rectum. Because of the fistula, we stopped the radiation therapy, but kept the chemotherapy going.
After a total of 8 FOLFIRI treatments, the tumour didn’t shrink any further despite increasing side effects.
December 2016
Stopped FOLFIRI in preparation for possible surgery
January 2017
The tumour started growing again instantly and a second fistula developed from my small intestine to the bladder, leading to a heavy abdominal infection.
To avoid sepsis, I was put on a cyclic TPN. At the time, surgery was deemed impossible.
My life was now a painful nightmare: I couldn’t walk anymore without the help of a stick and/or a wheelchair, had to urinate under extreme pain every 10-30 minutes and couldn’t sleep as a result. A full pelvic exenteration was on the cards, but due to my severely weakened condition couldn’t be performed.
Hence, my oncologist chose to give me a somewhat experimental treatment called immunotherapy.
February 2017
Started treatment with KEYTRUDA. No detectable side effects.
March 2017
Started feeling slightly better every day: less pain walking and less pain during urination. Started sleeping again. Felt fit enough to walk again.
April 2017
Felt fit enough to start cycling again, including rides to and from our home to Mount Sinai Hospital (about 8 miles in total).
July 2017
Spontaneous weight gain of 2-3lb per week, even though I was still on TPN and therefore controlled amount of calories. Suspected side effect was inflamed and probably fried thyroid. Otherwise I felt better than ever.
October 2017
Surgery was scheduled to reverse my colostomy and remove any residual tumour tissue, including a possible cystectomy depending on what an open procedure would reveal. Previous cystectomy in January showed plenty of necrotic bladder tissue, so the surgery required both a colon surgeon and a skilled urologist
The procedure was performed at Baptist Hospital and – to everyone’s huge surprise – revealed NO RESIDUAL TUMOUR TISSUE.
Fistulas were removed with minimal bladder resection. My colostomy was closed and a temporary ileostomy was placed. The TPN was stopped, and after 8 months I started eating again.
December 2017
In a second surgery, the remaining ileostomy was closed. Plumbing was now fully restored.
