There is no way to sugarcoat Week 6. It is the first time since this started that I have felt miserable. The good news is the worst appears to be behind me.
I was warned to expect more side effects but given how well I’ve been throughout treatment, I was not ready for where I was from Monday to Thursday.
- Severe fatigue was present all the time. I slept more than I was awake but never woke up rested. Most of the sleep was short lived and according to my FitBit only ranked as Poor with low sleep scores. On the upside, it did help the time pass more quickly.
- Easy to tire was common. Climbing our steps to the second floor needed a rest. It wasn’t loss of breath or an elevated heart rate. I was simply beat. Even small things like packing to move, I could do 10 minutes and needed a break.
- Constant chest pain which I understand is from the inflammation of tissues around my tumor. These are not cardiovascular but bone and muscle. It is also intense pain not just a little ache. There were times I couldn’t sit up or lie down.
- Absolutely no desire to eat. My stomach is an acid boil. I understand that the fast-replicating cells of the stomach lining are now damaged so that’s the root cause. Even the smell of food cooking sets off my stomach. It’s not the same as nausea.
- My esophagus is raw so everything I attempt to consume burns on the way down. Even water is a problem but only briefly.
- My weight is dropped to 78 kg (172 lbs). Not long ago I would have viewed that as great news when I was trying to trim down. Now that’s a cause for concern as it is a direct result of reduced consumption.
So I had my vent and got that out of my system!
On Tuesday I contacted the cancer clinic for advice on how to cope with all the changes to my status. This proved to be a good action as it provided options.
- For fatigue, sleep in a dark room free from distractions such as having a TV on. Good advice and I did sleep. It didn’t eliminate the fatigue but it helped the time pass.
- For tiredness, stay active but take lots of breaks and stay hydrated.
- To dull the pain, take Tylenol. Prior to my treatment, I’ve not been one to medicate much so when I do they are pretty effective. This worked well and gave me relief.
- It was tough to eat but I took all the regular meds to reduce nausea plus I have what is called Magic Mouthwash. It is like the topical that a dentist uses to freeze your gums before giving a needle. What I do is swish around my mouth and then swallow, wait five minutes, and then eat. It didn’t make food any more palatable but I could get things down. I still needed a lot of water to help even mushy stuff like mashed potatoes down but it worked. I consumed Ensure, which I don’t care for particularly, but they are highly nutritional.
- There is nothing to fix the roughness in my esophagus other than time.
- Loss of weight is normal and paying attention is all I can do right now.
There must be a yin and yang in my Week 6 experience. And so it would seem that I’ve turned the corner on Thursday with a sudden improvement.
- Still fatigue but not as much of a need to sleep.
- Still tiring quickly but recovering quickly.
- The pain in my chest is still present but not as bad without Tylenol. I’ll reduce my Tylenol dose.
- Nexium before I eat and Tums after are helping with the stomach acid but I do have an appetite and am able to consume more.
- My esophagus is slightly improved but the Magic Mouthwash gets me over that hump.
- My weight is creeping back up.
This small taste of a miserable few days pales in comparison to what many cancer patients experience. I’m so thankful I have coped well with the treatment and empathize with my cohort of cancer patients may not be so fortunate.
With that said, on Friday I’m pretty good overall but my ability to swallow is terrible. Everything, including water, burns on the way down. If you smudged what I’ve consumed today by 3:00 pm, it wouldn’t cover the palm of your hand. It’s not for lack of trying. I called the cancer clinic and asked to get a script for Tylenol 3 so I could deal with the pain. So for the next while, I take a pill 20-30 minutes before eating. I still need a lot of water to coax things along and that results in me feeling full quickly. So I have a solution to get over this hump but to eat half a plate of mashed potatoes and a piece of chicken (don’t tell Wietse I’m cheating) took me 45 minutes. The size of a fork-full is about the ½ the size of my baby fingernail. I was warned to expect this and I was hoping to dodge this bullet but ah well. I guess all the people praying for me have gotten me this far with relatively few issues so here’s hoping I’m on the down-slope to recovery. I got this even though this week has been tougher than I expected. Janet has been a trooper.
I mention again that I believe my lifestyle changes through the last three years are directly responsible for how I’m handling this assault on my body. I hope you share my message and if anyone you know is considering a comparable lifestyle change, cheer them on and support them to stay the course. There is no magic elixir but I think I know the formula.
Lifestyle change requires commitment, discipline, and works when you have the support of others.
As always, thanks for being at my side for this ride. It means a lot.
Peace, Love and Laughter