This post covers several weeks.
Thursday, November 15, 2018
Oh, Food I knew you well……….
Wrapping up week 3 of treatments and it is not getting any easier. The only thing that has gotten better is the cage/mask I have to wear, I’ve gotten over the claustrophobia. Well, it’s something.
Last time I mentioned that taste was changing, taste is gone, and the throat is so sore that talking is a chore. Laura has gotten used to a bizarre form of sign language I’ve created. I can still talk, just I’m economizing how much I do.
When your mouth hurts so bad that each time you swallow it feels like a pine cone making its way down your throat it’s easy to forget about food and water. My mind has shut off hunger pangs and now I have to force myself to take nourishment and hydrate. The doctors say this is normal and is why I have a feeding tube……. Therein lurks another problem.
I tried the meal replacement ENSURE and that lasted about a minute. Bam it was in the sink. I don’t know what it is about that stuff that makes me sick, but it sure does. Tomorrow I’ll start the prescription food. I hope it settles better than the other stuff or I will have real problems.
Has anyone ever noticed just how many pizza commercials are on TV? Olive Garden? Food commercials in general? When you can’t have it, it sure looks good. I had a dream about a glazed do-nut, yeah Krispy Kream…. still hot…right out of the oil.
If you lose your sense of taste you should also lose your sense of smell. That is a cruel irony of all this. I miss real food.
Moving on.
Since the above entry was written, I’ve had some antibiotics and the throat pain has abated to a certain degree. I had a thrush infection. Now the pain is manageable with Tylenol and swallowing isn’t as painful as it was.
Last Monday I was supposed to have my 2nd chemo infusion. It didn’t happen because a portion of my blood work was too high. The doctor, not my usual one, he was on vacation, said I was dehydrated, and my kidneys couldn’t stand the chemo. So, hook me up to the saline and retest. An hour to drain a bag of water, 2.5 hours waiting for blood results and I had already been there 3.5 hours.
The test came back higher than the first. We had to cancel the chemo and I have to concentrate on forcing water to drive the value down, so I can try again this Monday. 7 hours sitting in the infusion first of all clinic and a whole day wasted.
Thanksgiving, a food centric holiday…
First of all, I hope everyone had a great Thanksgiving surrounded by those who mean the most to you! I hope you ate until you passed out on the couch in front of the TV. Most of all, I hope your thankful for all you have.
With that said, Holy Moly guys you have no idea. Everyone is talking about food. Turkey, ham, stuffing and veggies…… Never wanted to sit down and eat more than anything in my life. Alone in a group or on the moon, I want to eat roasted turkey and cold turkey sandwiches with Miracle Wwwhip on white bread.
We made the decision to forego the trips to the infusion clinic for hydration in favor of going home to Burney. I can hydrate through my G-tube and keep up with at least 64 oz’s a day. Besides, 5 days in a hotel room can get to you and we needed a change of venue.
Clearance from the clinic and off we go. Friday was a nice drive on the hiway. Fast and uncongested. Home for a goodnights rest on our own bed. Wake up Saturday, cup of tea I couldn’t finish. Hmm, I always finish my tea at home.
Using my g-tube and adding water to hydrates all seems to be going well until it isn’t…. I suddenly announce, “We’ll this should be interesting…LAURA, I need your help now.” I dash to the bathroom with my feeding “rig” and syringes in tow. Laura shows up and says what’s going on? I explain I have to get everything disconnected before I hurl. If it is still connected the feeding tube stuff will go out top and bottom. We finally get the tube sealed and I spend the next 36 hours vomiting until it is nothing more than bile and acid. It burned my already burnt throat to the point I could not talk and stung unmercifully.
This brings us up to date and I will pick up with the Mondays visit to the Infusion Clinic.
Until then,
The bottom Line,
Tumor change= unknown
Pain = 8-9 on scale of 10
Weight loss = > 35lbs