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 insufficient pain control?

Pain control is a key endpoint because it allows you to eat.  Without pain control in the mouth, throat, and specifically with swallowing, there is no eating.  If you are not able to eat, they insert a feeding tube down your nose into your stomach and you are hooked up to a bag of parenteral nutrition. More than once I thought I was going there.  The nutritionists and nurses believe you need to eat more calories than usual while undergoing chemo and radiation therapy.  Based on my height and weight, I need to take in about 2000 calories every day to maintain my weight.  Because I am also dealing with chemo and radiation therapy, they say I should be trying to eat 2500 calories every day. I’ve never counted calories before so I don’t have a feel for what that means.  But there are apps for that, and I download one onto my phone and start tracking what I eat.  Its amazingly specific.  Any brand name is available.  Even standard menu options at The University of Michigan Medical School cafeteria are choices in the app.

Let’s go back to the beginning:

Week 1.  No pain relievers.  No restrictions on eating.

Week 2.  Ibuprofen (IBP) and acetaminophen (APAP) towards the end of the week.  Diet moving towards smoothies and soft foods.

Week 3. Must start each morning with 600 mg IBP so that I can sip on a cup of coffee. Then alternate IBP with APAP over rest of day.  Add in nightly gabapentin (GBP) on Wednesday. Add in nightly Senokot for constipation. Cream of wheat for breakfast, scrambled eggs for lunch, soup for dinner.  Add in protein smoothie for extra calories. None of this goes down easy.  It’s painful but I can reliably get to 2000-2500 calories a day.

Week 4. Add in oxycodone (OXY) with IBP, APAP, GBP for pain relief. Start taking GBP 2x a day.  Start taking Milk of Magnesia and Senokot at night for constipation. Week 4 is difficult.  I don’t yet have the right schedule of pain relief and my mouth and throat pain gets worse every day.  I struggle to get to 1500 calories a day. I have no appetite.  I start dropping weight. Mid-week I get a script for extended release morphine.  I try it one night and it knocks me out, noticeably slows my respiration, but doesn’t seem to reduce swallowing pain, so I don’t take it again.  By end of week, my diet has transitioned exclusively onto Boost very high calorie nutritional supplement.  It has about 530 calories in 8 oz. It has no taste.  With the right pain control, I can get this down.  Nothing else works. Towards the end of the week it gets hard to swallow any pill. A pill gets stuck in my throat and induces a gag reflex and I throw up my stomach contents into the sink.  Fortunately, my stomach was empty, so only some brownish clear liquid came up.  But this puts me into crisis mode. If I can’t swallow pills, how can I get pain control and how can I eat?

Week 5.  Children’s ibuprofen to the rescue, bubble-gum flavor. There is about 300 mg IBU in 15mL of children’s IBU.  I drop 1-2 tabs of OXY (5 mg each) into the children’s IBU.  In another 15 mL of children’s IBU I add the contents of a gabapentin capsule—now 3x a day. So now with 2 swigs of children’s IBU I get the IBU, OXY and GBP.  I’m able to swallow that combination several times a day.  I set up my plastic shot glasses on the counter.  First, water, then children’s IBU with OXY, children’s IBU with GBP, water.  The first swallow of water burns.  Depending on the time since the last pain relievers, it ranges between 3-6 on the pain scale.  I try to keep it under 5. I take the water to make sure my throat is damp.  Then the first shot of IBU, then the second shot, then another shot of water to rinse my throat and swallow as much pain medicine as possible.  By that time, the sides of my tongue and the other mouth sores are complaining (3-6) so I rinse with salt and baking soda.  This is now my sustainable pain relief regimen.  It’s not pain-free, I pay a cost to even take the medicine, but overall the pain is modest and short-lived. 

I go through at least a gallon of salt and baking soda rinse every day.  I’m constantly rinsing my mouth and spitting out the rinse into the sink along with thick ropy saliva and mucus. The rinse neutralizes the pH in my mouth, is isotonic and stops my mouth sores from complaining, usually.  If my mouth sores continue to complain, I wipe the inside of my mouth with 2% lidocaine on a cotton ball. Managing pain so I can eat 4 Boost 8 oz packs a day is now a full-time job.

Week 6.  Hallelujah.  Because my treatment was de-escalated, I have my last chemo on Monday and my last radiation treatments on Monday and Tuesday.  About 6 hours after radiation, I typically get a bolus of mucus and blood in my throat that triggers gag reflexes.  The last night was the worst so far.  So glad I don’t have to do any more of this. I’m also feeling bad for patients with HPV negative H&N cancer who get 7 full weeks.  These are the guys with feeding tubes. Its Saturday night as I write this. Proud of myself for getting 4 Boost down every day this week and 5 today.  I actually feel something like hunger.  It feels like my stomach is gnawing on itself. And when I drink a Boost that feeling goes away for a while. But the swallowing pain is not letting up.  They told me to expect relief in 2 weeks from the last treatment, but I assumed it would get slowly better.  In some ways it has.  The mucus and phlegm are rarely tinged with blood.  The pain intensity when I rinse with water is gradually getting less, I think.

So now I just have to stick with the program until the pain goes down and I need less pain medicine to eat.  The thing that I want most of all is a large Dr. Pepper fountain drink. Other sodas as well.  Coke, Grape soda, orange soda, Arnold Palmer, fruit juices, virgin mocktails, anything sweet.  I want to be able to drink one with no pain. On the food side I mostly want fresh healthy food and protein. In the depths of my despair a week or so ago I swore to myself that once I recovered, I would only eat food that was good for me and that I would appreciate every bite. Maybe the Dr. Pepper isn’t good for me, but every rule has its exception.