Stabbed in the back

A day in the life

Hey y'all,

Yesterday was a long one so I thought a little day in the life post was appropriate plus I’m sure you’ve missed my commentary. Let's start with a dive into the numbers:

Number of appointments: 7

Number of appointments that started late: 4

Number of doctors seen: 4

Number of facilities: 3

Number of waiting rooms: 5

Number of tumor stabbings: 21

Number of lab draw pokes: 3

Number of dollars spent out of pocket: $0 ( No I don't have amazing insurance, just already hit my out of pocket max … 6 weeks into the year, yay?)

Number of terrifying side effects explained: Too damn high

So what were all these appointments for? The first two were for the clinical trial, which has been going OK but too early to tell if it's effective. I'm in week 4 which included some tumor biopsies and because the study doctors are thorough that accounted for 16 of my 21 tumor stabbings on the day. They wanted 7 different samples from an injected/treated tumor and from a control tumor, when I got diagnosed the number was like 2 or 3 but overkill is underrated and I'm all for more data even if my back is very sore. So that's appointment #1. #2 was the actual clinical trial injections plus 2 lab draws, again these study docs are thorough, so that was 5 more back stabs and a couple arm pokes and it's not even lunch time.

After lunch, eaten in the car while going between facilities, I saw my other oncologist (see previous comment about overkill) at UCHealth and a bunch of her friends to discuss TIL therapy. TIL, tumor-infiltrating lymphocytes (the SEAL team 6 of my tumor fighting immune system), is a relatively new therapy just out of clinical trials. I'm headed into step one which is a tumor harvest surgery on Thursday where they'll remove a tumor, or two, and send it to a lab to extract the lymphocytes and over about 5 weeks turn SEAL team 6 into SEAL team 7 billion before sending them back to be reinjected into me. There's slightly more to it than that and if you’re curious you can read here: TIL Therapy or In Plain English: TIL Therapy for Advanced Melanoma and I'll have more to share once we're closer to step 2.

So a very long but ultimately successful day of appointments. Today is much lighter just a single appointment which is just a home infusion of iron - an effect of a chronic illness like Crohn’s is anemia so we’re almost always working to try and correct that. And tomorrow morning is the TIL harvest surgery, but that should be a lot easier than my last surgery and is outpatient so no hospital stay this time. While this week is a bit of an anomaly in terms of number of appointments, it’s not all that rare for me to have 3-5 different appointments in a single week. Dealing with a chronic illness, let alone 2, is a full time job going to appointments, communicating with doctors and their teams, dealing with insurance and staying on top of all my medications. All of that mixed with dealing with the side effects and you know… the actual full time job and that whole parenting thing which counts as another full time job, maybe two.

Party on Wayne!

-Jim