This was originally an email written to my family and friends on the date above. I decided to make these public in the event they may be helpful to someone in the future who is embarking on a similar journey to mine.
It hasn’t quite been a night-and-day situation (it could certainly be worse) from my first treatment, but I’m definitely struggling a lot more with this second treatment. I received my IV treatment on Tuesday around mid-day and experienced nausea and vomiting that night. I also think I had a bit of a fever overnight and didn’t really sleep much as a result. The other expected side effects have shown up as well:
– nausea (so far, without additional vomiting)
– cold sensitivity
– mouth sensitivity
– neuropathy (tingling in fingers)
I believe at least some of the increased side-effects can likely be attributed to an increased dosage based on some weight I’d been able to gain in the two weeks since the previous treatment. I had gained about 5 pounds and they ended up bumping up my dosage accordingly. I certainly want the drugs to do what they need to do, but perhaps there’s a middle-ground between those dosage levels that would be a little easier for me to tolerate. I’m certainly going to ask when I go in for treatment #3.
The fatigue is the most noticeable and frustrating; and I’m sure not eating much of anything besides toast over the last few days hasn’t helped in this area. Today I was able to eat a little more. I’ve felt weak overall, but the most frustrating thing is the inability to concentrate. I haven’t been able to work on, read, or write anything of significance. I’m reduced to watching videos and reading bite-sized articles. I’m sure that this will get better as I get further away from the actual treatment date.
Not everything has been doom and gloom – my body has continued to heal up around my port, so that was more comfortable this time (even when the needle was sticking into it). My mobility around my abdominal incision is continuing to improve as well.
The above was written on Friday but I didn’t have it wrapped up to send. Today (Saturday) I’m feeling a bit better on the fatigue and eating fronts but still experiencing the cold sensitivity and neuropathy – very annoying.
We took Caitlin to her first soccer game this morning – it went about as you’d expect with 3 and 4 year olds. She had fun, which was the important thing.
I’m looking forward to continued improvement and hopefully a good bit of “normal” over the next week.
Hope you all have a great weekend!
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