My time with Tom Baker

Figured I should tell you what a typical meeting is like when I head up to the Tom Baker Cancer Centre to meet with my Oncologists. The meetings typically take place every six weeks and I am always lucky to have a medical sherpa come along with me to make sure I remember what I am supposed to share with the Dr. and to remember what Dr. R or Dr. P give me as tasks.  I am honoured and lucky to have Tracey and Hal as my technical advisors (sherpas).

Last Wednesday Hal and I met for lunch then travelled up to the hospital for the meeting.  I swear we walked around for 1/2 hour till we finally found the yellow line (the only way I know how to find the Doctors office). We took two different sets of elevators till we got to the right tower. Now, this is important for you to know...I've been to this darn spot at least a dozen times, Hal's been there three times. It was very funny, and to be honest it was quite a bit of fun looking for the yellow line.

When I finally get there I have to fill out a form so the Doctor knows how I am doing physically and mentally. You would actually be surprised how many times something weird is going on so I have given up being upset with the monotony of the form as there is always something important to focus on.

Then I am weighed. Seems my weight is pretty consistent - which is really good (pats himself on back).

Then the Nurse takes me in to the meeting room, takes my blood pressure, temperature and heart rate, then she goes in to more depth on everything I have filled out on the form. Her role is to better understand the situation and focus the conversation for the Doctor. On this day these were the discussion points I highlighted for us to discuss: 

  1. The work my dermatologist did on my forehead (sending in slice of skin for pathology to look at as they want to rule out basil cell carcinoma), 
  2. The four weeks of Sutent were quite difficult and created significant challenges for my mouth, joints, stomach and butt.
  3. My butt (ya, that's exactly what I wrote on the form). The nurse thought it was a term for something else, but I simply laughed and said nope, my butt is a pain in itself.
  4. How do I schedule a drug holiday around Xmas time as I want to have my A game for when everyone is around.

After gathering all the information she leaves and I imagine she meets with the Doctor and they build a plan and together. It's all quite efficient and they give you the sense that they truly have your best interest at heart. It's clinical, but meaningful, and you feel like you could take as much time as you needed to get through the issues.

Then the Doctor homes in to the room. This session with Dr. R was one of the more entertaining. Here is a coles notes version from Dr. R.:

  1. Make sure that we know what the pathology is on the hole in your head so we can figure out if we need to adjust our plan.
  2. We are going to change the program for Sutent. Now you are going to do two weeks on the drug and one week off. The idea is that the toxicity won't accumulate to the point of discomfort and over six weeks you will have the same amount of immunotherapy. 
  3. "Put on this gown so I can take a closer look at your butt." This is obviously the funny part as Hal decided that this role was outside of the sherpa union bargaining agreement and he left the room. Dr. R got a good chuckle and say he didn't blame Hal at all. Nonetheless the Dr. took a good look and decided that the butt and the mouth were distressed and this probably meant that I should start taking a prescription for stomach acid (he probably said something more technical but I was on my own and don't really remember much of the conversation). Hopefully this in combination with the new two week protocol will help with the mouth and butt acid issues.
  4. And the best part of this whole thing (other than the laughs) was that I can take whatever time off of the drug I need in order to fully enjoy Xmas, or any other time for that matter. 

After Hal and I assemble after the meeting we then follow the blue line down to the pharmacy to fill my Sutent prescription and book my next meeting with the Dr. All in all this adventure is about an hour in length.

I actually enjoy these sessions. In part because each time I get a little better at figuring out the medical journey; but the real enjoyment comes from spending time with my Sherpas. Oddly enough it is quality time in the pale white dungeon of the Tom Baker.


Socially awkward

The real bucket list