Tuesday, March 9, 2021 was my first day of Cancer School. Yes, I’ve had surgery to remove tumors twice in the past 2+ years. But this was different. Somehow, spending a day in the treatment center to take my first medication through a clinical trial, followed by labs every few hours, was hard to bear emotionally and mentally. I really AM a cancer patient. This really IS serious.
First things first—I am NOT doing chemo at this point. I was accepted into a Phase 1 Trial for a very tightly targeted medication. I will take pills twice a day at home, with weekly visits to have lab work done. Unlike chemo, there have been very few side effects noted so far with those already in the study. Here’s my “handbook” for Cancer School with everything I need to know about being in a clinical trial for treatment.
Here are my notes from my first day of Cancer School. I include schedule, activities, thoughts, and various ponderings from throughout the day. Randy drove me to the hospital and stayed with me for the exceedingly long day.
We leave home at 6:15am. I have to be fasting—no food and, worse yet, NO COFFEE. (Why yes, I was indeed grumpy. Why do you ask?!)
On the hour drive to the big city, we talk about some of the realities of what we are facing—possible worst case, better case, and hoped-for best-case outcomes. It is kinda scary that within the next few weeks we will more clearly know which is likely to be true for me. We REALLY need this med to be effective!
Here is the traditional photo of the student on the first day at a new school. With my cuddly companion, Sassem the Sloth, of course.
7:30am: all signed in, heading upstairs to the Clinical Treatment Unit. Yikes! This is real.
Paperwork, more paperwork, forms, questions, more forms, informational handouts, more questions… sigh… I think a forest was killed for all the paper used today.
The nurse gets a vein on the first try (yay!) and inserts a line to hopefully be used throughout the day to draw blood for required labs. Once the first labs come back within normal ranges, my doc comes in to talk with us. He checks on how I’m doing, answers questions we have, laughs at my Art Journal pages about his words from an earlier visit. As always, he gives us the feeling that he has all the time in the world to spend with us—even though he is a busy specialist. He signs off—treatment is a go! Meds are ordered from the pharmacy, more fasting bloodwork is taken for the study, and I finally get breakfast and coffee. Ahhhhh….
I’m here for the rest of the day, with more blood draws at various intervals for study purposes. Over the 10 hours we are here, they will collect 18 vials of blood. At least I requested a bed to lounge in rather than a chair. And I’ve got the bonus of windows with a view. (Please don’t remind me that it is a beautiful, warm sunny day outside while I’m cooped up in here…)
10:00am: I take the first 4 pills of what will hopefully allow me to coexist with this cancer for the very long term…
The chaplain comes in to introduce himself. He asks how we are doing. I respond with a laugh, “Considering what we are facing, we are doing Fahbulous! We only cry every few minutes.” We end up talking together for quite a long time. He asks such good questions and opens doors to help us as we continue to process what this cancer recurrence means—individually, as a couple, as a family.
12:00pm: blood draw #4 for the study. Randy gets himself a lovely, healthy salad from the bistro downstairs. He offers to buy me the same, but I just want “comfort food.” Chips and a chicken salad sandwich with my usual half sweet iced tea taste delicious.
After lunch, I put the head of my bed down and doze for awhile. Early mornings, emotional stress, and boredom have caught up with me.
Another blood draw at 2:00pm. It’s a challenge for the nurse to get blood out of the pic line…but it’s still holding so far. One more draw in another four hours. Sure hope the line is still usable then. I HATE repeated sticks when they struggle to get a good vein.
Time for some art journaling, snacks, texts and planning what additional pages I want to add to this website/Heath Adventures. By now, both of us are weary—not just physically tired, but deeply drained after an emotionally difficult day. I didn’t expect the first day of Cancer School to be so hard! This is not something I ever wanted to go through…
The final blood draw close to 6:00pm was a challenge. The line didn’t want to give those last few vials of blood, but the nurse was persistent. Whew! Done for the day!
We pack up our belongings, and head home. I have all the meds needed for the next four weeks. After two hectic days at the hospital, I think I will just lay around for the next few days. I need the rest.
(THANK YOU for following with me on this cancer journey! I appreciate every comment, encouragement, prayer, good wishes, and other types of support. I can’t imagine doing this alone…)