Treatment Day 1

A Day in the Life

It starts with an early morning blood draw.  I show up at 7am at the Rogel Cancer Center at the University of Michigan. At the main entrance, off to the left, is the Pathology/Blood Draw desk.  I sign-in and am assigned number 20. The line moves pretty quickly. The other patients are like me.  Casually dressed, older in age, usually with a companion.  My number is called and I head back to the blood draw rooms.  The stick was painless and 4 tubes later I’m done. I head out with a bright blue wrap around my right forearm.  My next visit is 8am in the Cancer center, floor B1.

I check in and sit down and wait until I’m called.  Meanwhile, behind the scenes, my blood is being analyzed to make sure that my kidney function is good and that the different blood cell types are in the normal range. I get called in and a nurse checks my weight, blood pressure and oral temperature.  Then I go back out and wait for the next step.  It seems my blood passed the test because at 8:50am I get called back to the infusion area.  I meet Dawn who will be my chemo nurse.  Dawn preps my forearm and expertly inserts the IV.  Dawn explains that first I will get pre-medications that will take about an hour, followed by an hour for the paclitaxel and 30 min for the carboplatin.  So the whole infusion will take about 3 hours.

The infusion rooms are plush.  Next to the bed is a monitor on a flexible arm that is my personal TV. I remember going with my Dad when he was receiving his chemo treatments in Tampa.  Very different in that case.  Crowded waiting room with folding chairs full of abuelos y abuelas.  But I remember he enjoyed it because the treatments temporarily helped beat back his lung cancer and made it easier for him to breathe.  

Two young women push a beverage cart down the aisle outside my room. Shaylee steps into my room and asks me if I would like a beverage.  She returns with a coffee and explains she and her friend are Mennonite volunteers.  Shaylee is from Manitoba and her friend is from Idaho.  They both wear long ankle length dresses and running shoes and their blonde hair is pinned in a bun at the back of their head and covered with a small black cap. The founder of the Mennonites, Menno Simon, was from Friesland in the Netherlands where Kristen’s family is from. OK, maybe not such a coincidence but I appreciate the connection anyway.

Meanwhile, the infusion pump continues to run through the pre-medications.  First Benadryl and Pepcid to dampen allergic and hypersensitivity reactions.  I immediately feel a small but noticeable light-headed feeling from the Benadryl. Although uncommon, an allergic reaction to an infused chemotherapeutic can be serious so they pre-medicate everyone. Next comes Aloxi (palonosetron) and Decadron (dexamethasone) to prevent nausea.  When it is time to switch to the paclitaxel, Dawn puts on a disposable gown.  Dawn explains that according to JACO (think OSHA for medical workers), nurses need to protect themselves from the chemotherapy drugs in the event of a spill or leak. Dawn acknowledges this may cause some concern for some patients, so she takes the time to explain why she is putting the gown on.

My paclitaxel is almost done and I’m not feeling anything other than an urgent need to urinate.  Between the coffee, water and the IV bag I think I’m getting a lot of fluids.

The infusion rooms each have 2 beds separated by a short divider.  My roommate Greg walks in wearing a Detroit Lions hat.  Because the Lions beat the Philadelphia Eagles yesterday, we have something fun and easy to talk about.  After the paclitaxel is complete, I get up again to use the bathroom.  On my way back in I notice that Greg is sleeping and appears to have a central IV coming from his chest. I gather that Greg has been here before.

We switch over to the carboplatin and I’m totally not noticing any effect of the chemotherapy but am imagining the drugs circulating through my tumor and invading the cancer cells to work their mischief. After the carboplatin I get another chance to talk with Dawn and ask her about how I should feel after the chemotherapy.  She says I won’t feel anything until after a few weeks.  The chemo doses I am receiving are moderate relative to front-line chemotherapy used in breast cancer for example. But nonetheless, the effects of the chemotherapy on my normal cells are cumulative and towards the last few weeks of treatment I should expect to feel fatigue. I ask her whether it would be a good idea to continue to commute by bike on my chemo days.  Dawn says she would be primarily concerned about the Benadryl and how light-headed I was feeling and whether that would affect my balance.  I concede that is a good point.

I’m all done and thank Dawn and tell her I hope to see her next week.  I head out to the cafeteria and  catch up on email. Before I know it, it’s 2:30p and I head over to Radiation Oncology.

I sign in at the self-serve kiosk, change into a robe and wait to be called.  At 3:00pm I’m called into Tx1 (treatment room 1), which contains a big x-ray or external beam machine and a table that adjusts in all directions.  I take off my robe, put in my mouth guards, lay down on the table putting my neck on my custom-made neck cushion and grab the adjustable rods sticking up along the edge of the table that help extend my shoulders down. They put the custom fit mesh mask over my head and snap it to the table so my head is immobile. Not sure I’ll ever get used to the combination of mouth guard that puts my jaw in a fixed position and mask. Every time they put them on I need to take deep breaths to relax myself. The radiation beam is emitted from a flat table about the size of a checkerboard with a glass front that is extended out from the machine so that it can rotate all around my head. At first they take a couple of pictures to make sure I am aligned correctly.  And then they tell me they are all set and the radiation table makes 3 passes around my head.  And then its over.  They tell me I did a great job.  Which is what they told me after my MRI, which was much more difficult because it took 35 min, and what I expect they tell everyone they don’t have to sedate.

Afterwards I meet with my radiation oncologist. I learned that my tumor staging was T2N1 from one of the reports in my health portal, which means my tumor mass was between 2-4 cm with one affected lymph node.  I ask her whether I am still a good candidate for the trial, which involves the option to shorten the treatment to 5.5 weeks based on an MRI and PET scan showing tumor shrinkage after the first 2 weeks of treatment.  She tells me that my cancer is still Stage 1 cancer. (Stage 2 cancer would have a second affected lymph node on the opposite side of my neck).  And anyway there is a small difference, a percent or two, in outcomes between Stage 1 and 2. She says they are increasingly convinced that they have been overtreating Stage 1 & 2 HPV positive Head and Neck Cancer because the standard of care (SOC) was developed based on the original smoking related HPV negative Head and Neck Cancer population.  She says that the 70 Gy of radiation that is the SOC for Head and Neck Cancer is not free.  They have found that in the HPV positive Head and Neck Cancer population that lives so much longer, there are symptoms that impact swallowing that emerge years after the radiation treatment in about 20% of the treated population. One of the potentially important outcomes of the trial, in addition to supporting a re-definition of the SOC for HPV positive Head and Neck Cancer, is to potentially identify biomarkers that identify patients that may in fact need longer treatment.  Meanwhile her pager and phone were blowing up but I appreciated she went through all of that with me.  I feel better about the clinical trial.  Of course, I won’t know if I meet the metrics for treatment reduction until I get to that point in the trial.

By now the effects of the Benadryl seem to have worn off and I feel good enough to drive myself home. In the weeks ahead I’ll get Kristen and my support team more involved. Overall it was a good day and I feel positive about the treatment and my outcomes.