Posts

Week 5 and 6 and Pain relievers

Lucy in the Sky with Diamonds   The story of managing my cancer treatment is primarily a story about managing the use of pain relievers of increasing potency.   Every week, the cumulative effects of treatment on mouth and throat pain get worse.   So what works one week no longer works the next week.   And surprisingly, there is no playbook to follow.   Instead, every Monday we meet with a nurse and review experiences and take their advice and guidance on how to get through the next week.   Because the nurses are experienced, this method works pretty well. However, the method makes the nurse the focal point for information transfer.   You have to ask the right questions.   They have to foresee what problems you may face in the future.   Given that they have treated hundreds of similar patients over the years, why isn’t all of this data captured?   Why can’t we review all of the cases with good pain control and also the cases with i...

Week 4 and De-escalation

My Sweet Lord A lot is happening very quickly so I better catch up on the blog.   First the very wonderful delightful news that my tumor showed > 50% regression 2 weeks after treatment had begun based on a PET/CT scan and therefore I had the option to shorten my treatment from 7 weeks (35 radiation treatments) to 5 and a half weeks (27 radiation treatments).   I had this option because as part of my treatment I agreed to enter a clinical trial that was exploring whether shorter treatment was sufficient to maintain efficacy in the HPV positive Stage 1/2 Head and Neck squamous cell carcinoma population. As I had described earlier, the standard 7 weeks treatment duration was optimized for the traditional H&N population that was associated with smoking and was HPV negative. The clinical trial was also investigating several other correlative science endpoints including whether HPV ctDNA was a good biomarker to predict outcome.   Investigators are interested in wh...

Weeks 2-4

Yer Blues It’s been about 3 weeks since my last post.   I’ve been struggling with something interesting to say.   The main narrative has been how to manage mouth, throat and swallowing pain and still push down 2000 calories a day.   That has been a miserable experience and not very interesting.   And I can’t think of any Beatles song titles that fit the experience—such a winsome bunch of lads. But the purpose of the blog was to capture events and memories so I’m forcing myself now to capture the last 3 weeks before I gratefully put it behind me and forget about it. I remember on Chemo Day 2, Monday, September 30, bringing an egg and cheese and spinach bagel sandwich to the infusion room for my lunch and enjoying it.   Ah, the salad days of my treatment.   During the relative honeymoon of my first 2 weeks of treatment I was mostly eating normal foods and still actually tasting them. I remember meeting with the radiation oncologist on Wednesday, Octo...

The emotional roller coaster of a cancer diagnosis

Helter Skelter According to the National Cancer Institute, and based on data from 2014-2016, approximately 39% of men and women in the United States will be diagnosed with cancer at some point in their lifetimes. In 2016, over 15 million people were living with cancer in the United States.     So why is a cancer diagnosis so often unexpected and disruptive? Both of my fathers (my biological father and my stepfather) died of cancer.   Why was I surprised and alarmed when I received a cancer diagnosis?   Probably because most of us think cancer is a disease of the aged and not something that happens to us.   And we forget how quickly we age.   I’m 58, old enough for 2 rounds of colonoscopies. In fact, the median age of a cancer diagnosis is 66.   Half of all cancers are diagnosed in people aged 66 or younger—that seems remarkable. About 24% of all new cancer diagnoses happen within the 55-64 age group that I belong to. Based on these data, a...

Chemo day, week 2

Chemo day, week 2 Back in the USSR Looking back to my first treatment day, it’s clear in hindsight that I was under-estimating what chemoradiation treatment would entail. I was so excited to finally get my treatment underway that at the end of Day 1 I was buzzing. That good feeling lasted until Wednesday when I was hit with some constipation with cramping and generalized fatigue that I attributed to the chemo along with mouth changes including xerostomia (dry mouth) and altered taste that I attributed to the daily radiation treatments.   I soon learned that the steroids I received as part of the pre-medication were preventing those symptoms for the first couple of days but as they washed out, I was starting to feel the normal side effects of my treatment. The dietitian had previously recommended a smoothie supplement to combat constipation that consisted of a 1:1:1 mix of prune juice, apple sauce and all-bran cereal and so I started adding a few tablespoons of that int...

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 ne...