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.
I gave this motivational talk at the Oncology Symposium 2019 in Hollywood, FL. It gave me a chance to describe what it’s like to survive cancer when the common treatment methods fail, and how immunotherapy (specifically Keytruda) saved my life. This is an abbreviated version of the story I’m telling in my book BROKEN BOWELS.
I didn’t have notes or a presentation, and did all this from the top of my head, while taking care of the event streaming and tech. Perhaps I’ll make a Power Point for next year 🙂
I’ve filmed this presentation at the Oncology Symposium 2019. Dr. Abi-Aad is talking about how to use Molecular Targets to personalize medicine, using genetic sequencing.
Dr. Simon Abi Aad is board-certified in internal medicine, medical oncology/hematology and has special interest in public policy and cancer care delivery to patients. Dr. Abi Aad earned his medical degree from the Université Saint Esprit de Kaslik Faculté de Médecine (Jounieh, Lebanon), did a research internship at the MD Anderson Cancer Center and completed his Internal Medicine Residency at the Icahn School of Medicine at Mount Sinai – St. Luke’s Roosevelt Hospital Center (New York, NY) with extensive rotations at the Memorial Sloan Kettering Cancer Center. After his residency, Dr. Abi Aad was awarded a Fellowship in Hematology/Oncology at the University of Miami – Sylvester Comprehensive Cancer Center (Miami, FL).
In this presentation, one of my oncology nurses Kenia Caballero gives us an overview on how immunotherapy works. She was one of the many wonderful nurses who administered both chemotherapy as well as immunization drugs while I was undergoing treatment in Mount Sinai Miami Beach during 2016 and 2017.
I’ve filmed this talk at the Oncology Symposium 2019 in Hollywood, FL.
This is a presentation about updates and issues in hematologic malignancies, specifically B-Cell malignancies. Amy gave this talk at the Oncology Symposium 2019 in Hollywood, FL.
Amy L. Goodrich, RN, MSN, CRNP-AC, is a Research Associate at The Johns Hopkins School of Medicine, and Nurse Practitioner in the Division of Hematologic Malignancies for The Sidney Kimmel Cancer Center at Johns Hopkins in Baltimore, MD. She manages patients with various types of hematologic malignancies, concentrating on lymphomas, in addition to managing The Sidney Kimmel Cancer Center’s team of research nurses.
I’ve filmed this presentation at the Oncology Symposium 2019 in Hollywood, FL. It’s about advances in breast cancer treatments over the last year. Please excuse the audio quality, she was the first speaker of the day and we were still figuring things out so early in the morning.
Dr. Krill-Jackson is a practicing Hematologist & Oncologist in Miami Beach, FL. Dr. Krill-Jackson graduated from University of Michigan Medical School in 1990 and has been in practice for 28 years. She completed a residency at Brigham & Women’s Hospital.
Great news everyone: I’ve just started a band new YouTube channel dedicated to this project. Although my main channel is thriving, I felt that the cancer related content deserves a dedicated place because it’s unrelated to 3D tutorials or tech reviews.
The new channel will feature lectures I’ve recorded as well as coverage of Karen’s Oncology Symposiums, featuring a wealth of information that deserves to be shared.
But that’s not all: while YouTube has the largest audience out of all services out there, it’s sometimes beneficial to listen to the information as it’s presented, be that on a walk in the park, a lengthy commute, or a boring flight. Hence, all content will be available as audio versions in the podcast feed.
You can subscribe to the service via these services, using your favorite podcast client:
I streamed this event live from the Hard Rock Hotel and Casino in Hollywood, back in April 2019. I totally forgot to put it on this site (like so many other things and videos that I’ve posted on YouTube already).
This was a one-day speaker event (including myself), about Empowering Professionals and Advancing Evidence-Based Strategies in Cancer Care.
Speakers and Program Outline
Below you’ll find clickable links that take you directly to each speaker’s part in the video.
In this episode I’m showing you my CT Scan I had at Pinnacle Imaging in June 2019 (so that’s two months before I’m making this video). I don’t know much about what’s in those images, but I’ll try my best to talk you through the interface and what those grey blobs (might) mean. Bottom line is: I’m healthy – that’s all that counts 🙂
A reminder to all of us that making mistakes isn’t a bad thing at all, quite the opposite: it’s an opportunity for growth and to get better. Our endeavour to be “perfect” all the time and not make mistakes may well be the cause for limited growth.