Ann & I are exhausted. It was a long day. We got up at 7:00 am and left the house at 8:30 am. Traffic on the Mass Pike was frenetic. We pulled into Dana Farber around 10:00 am, in time for my 10:15 am blood draw. Ann dropped me off at the entrance and I zipped up to the 11th floor and registered. I got my Dana Farber wristband for the day and sat down to wait. Just after Ann arrived from parking the car, a nurse called my name. The nurse accessed my port, drew blood, and set up the tubing for chemo.
Our next stop was radiation oncology. We went down to L2. I scanned in and donned a johnny. The older gentleman who has the slot before me walked into the waiting room and held up a single finger (index) to me. He finished his thirty-fourth session and has one more to go. He paused to ask me how the tube insertion went which I appreciated. The radiation tech called me in and got me set up for my radiation session. Music for today was from one of my favorite jazz concert recordings, The Carla Bley Band’s Live! Tracks played were “Blunt Object”, “The Lord Is Listenin’ To Ya, Hallelujah!”, and “Time And Us”. When my session finished, I heard and felt the mask being unlocked. When the mask cleared my vision, I saw it was Jim, the head tech doing the unlocking. Jim is generally in the control room at this point in the action. He is also the largest and strongest tech. Putting his hand under my back, he gently raised me off the table. With my tube still new and healing, sitting up from the table by myself would have been painful. The radiation techs are very aware of tube insertions and I think Jim was there because he could get me off the table smoothly. It’s the little things that count and Dana Farber racks them up.
I returned to the waiting room and saw Jeff. As he was being called in for his session, he asked me how the tube surgery went. It’s like I said last week, being a Dana Farber patient is like being a member of a club. I doffed my johnny and Dr. T.’s (the radiation oncologist) nurse came to bring us to our next appointment.
Dr. T. checked out my tube, looked at my mouth, tongue, and throat, and asked the standard questions. At this point, my mouth, tongue, throat, and swallowing muscles are incrementally degrading with each treatment. Dr. T. told me what to expect in the near future and discussed long-term pain control strategies.
Our next stop was back on the 11th floor for my checkup with the oncology team. When my vitals were taken, they noted that I lost three pounds. I know when that happened, Saturday through the wee hours of Sunday. Lesson learned: I will never have anesthesia again when constipated. My oncologist and team leader, Dr. H., was away, so I saw the other Dr. H. (hematology/oncology fellow) and another attending oncologist Dr. L.. My blood numbers were reviewed and it was a positive report. My red blood cell count is stable and my protein level is significantly higher reflecting the changes in my diet. Everyone took a turn poking and prodding my tongue, mouth, and neck. Again, we talked options for pain management as we move forward. Dr. H. gave us a new factoid. The side effects from radiation will continue incrementally for a week following my last treatment. But, the healing process will start soon after and progress at a faster rate.
From the 11th floor, we walked down a flight of stairs to the 10th floor and the infusion room, stop number five. I registered there and was told that infusion was running behind. I had a noon slot but it was more like 2:15 pm before my chemo started.
Brooke, the nutritionist came by with the idea of doing my tube instruction at the same time as chemo. Since we had a delay, she found an examining room and we worked there. Brooke looked at my tube assembly and asked me how it felt. I told her that the discomfort was minor; but when Ann cleans the crusting around the plug where the tube enters the abdomen, there is one spot that spasms and makes my leg and foot bounce up and down. At first, I tried to suppress the bouncing, but that made the cleaning more uncomfortable. So, now I bounce. The dogs think it’s pretty funny, but they understand. Brooke had me unhook the tube’s nozzle from the Velcro holder and uncap the nozzle. She then inserted a 60 ml syringe (which is used as a funnel) into the nozzle. Next, I released the clamp that sits halfway on the tube. We were unlocked and primed. Brooke filled the syringe with room temperature bottled water to flush the tube (whenever I eat, gravity pulls stomach contents into the tube.) Then she opened up a can of formula (unflavored ‘cause it’s going straight into the tummy, no tasting involved!) and filled the syringe. The formula is thick and I had to raise the tube to get it to drain. It’s fun to watch the chocolate color seep through the tube. The last step was to flush the tube with water. I found that if I hold the nozzle high and keep my mouth shut, the water easily drains below the clamp and I can secure the clamp without any trouble. Brooke’s plan is for me to ingest one can of formula a day while I’m still eating orally. Two cans of formula equate to a meal, so as my oral food intake decreases I add more formula. Brooke checked in with the infusion room. There was still a delay, so she brought us out to the waiting room.
Around 1:45 pm, my chemo nurse came out and apologized for the long wait. Mondays are always busy, being after the weekend, and midday is the time in most demand. I was brought to a bed, not a chair, a first. All the chairs were full. It turned out that the bed was handy for napping! Around 2:15 pm, she returned with my fresh brewed Carboplatin and hooked me up. I read a bit until I began to drift. Put the Kindle down, closed my eyes, and slipped into a nap. Before I knew it, the IV machine began to beep. It made an excellent alarm clock.
Ann & I hit the road around 3:15 pm. We ran into pockets of heavy rain, otherwise the ride was ok. The doggies were real glad to see us. Dinnertime is 3:30 pm and we were forty-five minutes late. Tomorrow, Lora is driving me to Dana Farber; I’m looking forward to a fun trip. It’s an easy day, a radiation treatment followed by a trip to the 11th floor to sign the papers needed to join the acupuncture research.
Thanks everyone for all you do to make my cancer treatment gentler. Your support and comfort is a cherished gift.
Love…
Richard
