Those of us that have experienced cancer, either by having it or by supporting someone through it, know that cancer changes a lot. Daily/weekly/monthly trips to medical stuff, frequent illness, fatigue, crankiness… it is a long list of crap that piles on.
So, when that ends, it is worthy of a celebration. My girlfriend coordinated a week long retreat to a house in Virginia with a big celebration party for the end of chemo. Officially, I took my last pills the day after my niece was born, April 8th. Not having to take ATRA again is a big improvement on my life.
Oh, and the party was amazing. Friends and family turned up in a really high number and we were able to drink some beverages, eat some bbq, and enjoy a really nice summer day.
There was also a really tasty cake.
And some delicious treats from Flying Monkey Bakery.
Yup, I did it again. I spent several months running with a great group of people in another Ulman Cancer Fund Cancer to 5k group. Some familiar faces, but plenty of new this time round. I ran a little faster, even though I didn’t really run between the last time and the start of this training period.
This is my last time as a participant. Next year I plan on being a Sherpa. That just means that instead of having my water bottle carried for me, I get to carry it for someone else. Should be fun!
Getting a PhD and being an academic requires writing and writing isn’t something that I am terribly good at. I used to think I was, but now it feels like a slog. So how do I fix this?
The answer is that I write. I write a lot. And… I get someone to hold me accountable, preferably in a way that also benefits them. I now have a fellow PhD student that also needs to write and so through mutual harassment we will keep ourselves on track and putting words on the page.
This is my list of things that I need to write:
- dissertation proposal
- a design method paper for a project
- that novel I keep writing notes about
- the rules to the game that I just jotted down in my notebook
- the two journal papers that my integrative paper needs to become
Probably should stop writing here then and move on to those other things, but I have made it a goal to update this site more often. I am hoping that will help with my writing. I doubt that it will hurt.
Being sick sucks and cancer is the perfect storm of sick. Recovering from it is an interesting experience because you think: “now I am healthy.” Then your body laughs in your face. It is frustrating and disheartening. But, there are some pretty great organizations out there to help. The Ulman Cancer Fund has a program called “Cancer to 5k” that brings volunteers and cancer survivors together to train for a race. This is a great way to meet people and get back into your body after treatment.
One thing to note, many of the volunteers are survivors themselves. Not all, but a good number. Other volunteers have either been affected directly by cancer or have been brought in some other way.
As a survivor participant, it is a really great program. This was my first race with them. As you can see, I was running at the end of it, but I was definitely walking at the start. Immediately after leaving the hospital after my 35-day stay, I could barely walk a mile, much less run.
I’ve also made some great friends. (Not all of whom have cancer.)
A lot should have happened by now. I should be the architect for software being developed by an awesome company. I should have published some great articles. I should have defended my dissertation proposal and be working on my dissertation. That was the plan.
The reality has been different. A year ago, I started feeling very poorly. It was probably more than a year ago, but it was gradual and there was a lot going on so I only really noticed when something was drastically wrong. And something was drastically wrong. I couldn’t walk across the room without getting out of breath, I would wake up in the middle of the night soaked with sweat, and I was bruising easily. My gums started to bleed… All signs you should see a doctor pretty darn quickly.
A trip to urgent care resulted in an ambulance ride to the hospital. As my phone started to die I managed to get my room number to my sister and the name of the hospital to my girlfriend. Once they arrived they noticed the signs that said oncology, but even after spending the night in the hospital I didn’t know why I was there.
In less than a day, I was diagnosed with Acute Promyelocytic Leukemia. I had checked into the hospital without an immune system, no red blood cells to speak of, and no platelets. Thirty-five days go in the hospital getting a combination of Arsenic Trioxide and ATRA during what is called “Induction Therapy.” That was followed by eight months of “Consolidation Therapy.” Now it is a year of “Maintenance Therapy.”
Fortunately, I have a very kind and caring girlfriend who helped a ton during this period. My sister was able to help a lot, too. Some really wonderful people at my mom’s work had a bake sale and I was able to use that money for gas to get to my infusions. My department and advisor were incredibly supportive and understanding. I am immensely grateful to be alive and to have received so much kindness throughout this ordeal.
So, it is all over right? Nope. Cancer’s shadow hangs around. You are permanently changed in ways unfathomable before. Every experience is unique, mileage does vary. Peripheral neuropathy make hands tingle and feet hurt. I have found running to help in combination with the medications. My brain full of mud. Imagine spraining your ankle and having to walk around in a splint, but it is my brain. Some of it was a B12 deficiency. Some of it seems to be helped by some other meds. Backing off the meds for the neuropathy seems to be helping too. Oh, and I am tired. But, I will adapt and things will get better.
Better than being dead.
So progress slowed down a little bit, but things are starting to move again and I am very excited for that to happen. The projects I am working on are exciting and I can’t wait for them to move forward and get published.
Maintaining a presence on the internet has always been a struggle for me. Throughout the many iterations of social media, I have failed to be more than a consumer. There have been fits and starts at a web presence over the years, but rarely have I made it past the one or two fitful articles and the rather dull about me section.
The mission of this iteration is threefold:
- To hold my CV
- To reflect on articles
- And to practice writing
An academic profession requires an incredible amount of writing and I’ve always found it difficult to get started. Once started, I can easily burn through pages, but it is the getting started part that always gets me. The internet generally agrees that the way to move past this hang-up is to write – to write a lot. Normally I would choose a more private venue, but there is another component of academia that I need to acquaint myself with: being public. A key component of a successful academic career is the ability to talk about yourself and your research. Talking about your research is fun and exciting, but talking about yourself is something that you are asked to do a lot and is not a very comfortable thing to do.
This blog is not science, but it will talk about science, or rather, around science. By this I mean that what I post may be my reflections around a topic, article, or phenomena, but I make no assurances that I have gathered information to the point of saturation or done rigorous theory building. What I write here will be early-stage, un-vetted, uncorroborated, and, as will likely be discovered, poorly edited. As an idea develops, I may discover that I do not like it very much or consider it correct. As such, there may be contradictory posts and I am fine with this.
If you come across ideas that inspire or revolt you, then feel free to contact me. I welcome constructive input and enjoy hearing alternative perspectives.
Oh, and my CV is coming. They are just really irritating documents to create.
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