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, October 2, during the second week of treatment, and describing the beginnings of a sore throat.  I remember by Friday, October 4 needing to take ibuprofen for the first time.  And then by the next Monday, October 7, I met with the oncology nurse and described my challenges with managing the throat pain, which was requiring me to alternate ibuprofen and acetaminophen in order to eat anything at all.  On that day she discussed moving me on to narcotics, but I resisted (I was no naïve) and so she gave me a script for gabapentin (brand name Neurontin), which is a drug discovered by chemists at Parke-Davis in Ann Arbor and FDA approved for neuropathic pain in 1993. Pfizer, who acquired Parke-Davis, inherited lawsuits stemming from the company’s promotion of off-label uses of the drug.  Gabapentin is now generic and is increasingly used in diverse settings for pain management.  I took the first dose of gabapentin the night of Wednesday, October 9 and remember feeling rather euphoric Thursday morning but with no significant impact on my throat pain.  But I was told I had to take it for several days in order for it to have an effect, so I kept taking one capsule every night. Unfortunately, the feeling of euphoria in the morning was limited to the first dose.

During the third week of treatment I was having swallowing pain and also mouth pain from ulcerating sores along the sides of my tongue and elsewhere in my mouth. On Wednesday of that week the radiation oncologist gave me a script for “Magic Mouthwash”, which contained lidocaine and provided a numbing sensation to my mouth.  That was mostly helpful for sleeping but less helpful for eating because the mouthwash worked best if you swished it in your mouth, spat out the excess and left the residue behind.  Somehow, I got through the rest of the week.  My diet stabilized to a few options: cream of wheat with whole milk and butter and brown sugar in the morning, 2 or 3 scrambled eggs with butter and cheese for lunch, a protein shake, and maybe some mac and cheese and possibly a hot dog for dinner.  By this time, I wasn’t able to taste the food, I was just eating it. The key to food was that it had to be wet, soft, greasy and relatively tasteless.

A number of people tried to make food for me but it was mostly hopeless.  For broccoli and cheese soup, the broccoli had to be completely cooked and mushy soft.  Kris tried twice with a lentil soup and a bean soup.  The first wasn’t soft enough and the second had too much residual tomato flavor that I couldn’t tolerate.  Santhoshi tried to make lentils and although they were soft they had too much flavor. Smoothies from Tropical smoothie were too sharp tasting. My mother-in-law finally made a bland cauliflower and cheese soup that I could eat and had several times.

By Monday of week 4, I was rather desperate and gratefully took the script for oxycodone. However, my pain management schedule still started with 3 ibuprofen upon waking.  Ibuprofen was the best pain reliever for taking the edge from swallowing pain.  Getting these down over my raw throat with water was pretty tough but once I had these down, I could eventually sip a cup of coffee and half and half that would lubricate my throat so that I could then eat some cream of wheat.  Following the morning ibuprofen, I would alternate oxycontin and ibuprofen about every 3 hours.

Another important aspect of managing mouth pain was to constantly rinse my mouth with a solution of salt and baking soda.  This helped lessen the acute pain of mouth sores and also helped remove the thick saliva and mucus that was constantly building up in my throat. I was doing this every hour or two day and night. 

What else?  Oh yes, constipation.  The day following chemotherapy I would always miss a bowel movement.  The anti-nausea drugs they provide as pre-meds to the chemo tend to slow you down.  Because I can’t imagine what the pain of vomiting over my sore throat would be like, I gladly accepted the constipation.  However, this gets a bit worse every week. By the third week, I miss 2 days following the chemo, have a very difficult bowel movement and then miss 2 more days. So in the fourth week, I start taking Senokot, which contains Senna glycosides, every night. On Tuesday night I also took some Milk of Magnesia.  Lets just say those interventions were successful.

My diet continues to narrow.  I can no longer tolerate the thickness of mac and cheese and the spicy taste of an Oscar meyer hotdog.  Instead, I now eat soft noodles in clear broth for dinner.  To supplement my diet, I am exclusively drinking Boost very high calorie protein drinks, which are designed to maximize the number of calories with every swallow.  Each Boost drink is 530 calories and I have one or two a day.  With one Boost drink I’m at about 1600 calories a day which is below the 2000 calories they say I need to cope with the metabolism of the chemo and radiation treatment.  But getting that second one down is sometimes more than I can manage.

By the end of the 4^th week, the pain from mouth sores is significantly less and I have to wonder if it is due to the gapabentin. During the 4^th week I also start to develop radiation burn and an itchy rash around my neck.  I have a lotion designed just for this that I apply liberally and it helps a lot to reduce the itching. I just have to wait until after my radiation treatment every afternoon to apply it. 

Finally, my mental and physical energy level is very low.  I still enjoy taking the dogs for a long walk but its more of an effort now. Interestingly, for the first time in decades I enjoy watching baseball on TV.  The pace is now perfect for me. (Another gabapentin effect?). I’m struggling to complete tasks at work.  Fortunately, I am almost through with my treatment.  More on that next.