Stem Cells… and Mucositis

Posted: September 11, 2017 in The Battle Against MDS

I checked back into the hospital on Thursday, August 24th but I was able to get back out and have dinner with my wife and kids. Chemo started on August 25th on what is called Day -5. However, the chemo was very tame and so I was able to have a day pass Friday. Ditto for Saturday.

Saturday I went to watch my daughter’s final baseball game and I barely made it in time. I should have been late – and stopped off to buy sunscreen. Oops. And then I raced from there to the soccer field where my other daughter played her last soccer game. Needless to say I got sunburnt. Not good (or smart) when you’re getting radiation in three days.

The chemo after that was too much to get a day pass (Sunday/Monday). On Tuesday I got radiation. Neither were big deals. I felt nauseous, but didn’t vomit.

Wednesday I got my donor’s stem cells:

stem cells

Kind of anti-climatic, right? Just a bag of lighter-colored blood. And it took about 45 minutes to give to me through the Hickman line.

After that it was several days of slowly dropping blood counts. I didn’t need my first blood transfusion until Day +5. My temperature remained below 37 degrees through today (Day +12).

On the night of Day +9 I had the worst pain felt in either hospital stay. Oral Mucositis.

https://en.wikipedia.org/wiki/Mucositis

It was centered around my throat/back of my mouth and not even a double dose of morphine and a numbing rinse could help it. Kept me up for four hours. I finally slept and when I awakened, the mucositis seemed to move away from the throat and throughout the mouth. This was actually better. The pain lessened a lot and could be mostly handled by morphine and the oral mucositis rinse.

Unless I ate.

I think I delayed getting this affliction by a day or two thanks to excellent oral care. I was rinsing every two hours with mouthwash (no alcohol) and brushing frequently. But everyone gets mucositis if they have this chemo (apparently) so I got it around midnight of Day +9 (so pretty much Day +10).

Once it moved to my mouth, the steady pain was manageable. But if I ate, the pain was beyond control. I quickly discovered that I can only handle bland food and ideally wouldn’t have to chew.

Here on Day +12 I’ve discovered a couple of good foods for this. The instant oatmeal, if made extra creamy/soft, can just be swallowed. And mashed potatoes with gravy – make this extra creamy as well. Both of these things are actually decent tasting, and what’s more they are filling. Unlike soup, which I can also manage but leaves me hungry again an hour later. Top all this off with ice cream.

One other thing I’ve been experiencing is a drop in magnesium. So I’ve been getting this through the IV every day since Day +5. This one sucks because an hour into it my face gets ridiculously hot. Word of advice – get this over at least three hours, not two. Today I’m trying four hours, to see if I can stop the ‘hot face’ from happening.

That’s it for this update. I hope my blood counts start rising in three days (Day +14), but likely five or six days. When that happens, the mouth issue goes away.

 

 

 

 

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