2/6 Day +14 & 2/7 surprise
Time is passing rather quickly still which is good. Many of the days are the same, but there is always one new symptom that creeps up that we have to deal with. Then it’s fixed or just goes away the next day. However, it seems as soon as we fix one problem, another one emerges. Take my feet burning as an example. The feet no longer burn as bad. So yay! We switched over to oral cyclosporine and that was a fix. More of a temporary fix though, because in classic hospital fashion, we started IV magnesium-- and it caused the same flushing and burning! So feet burning again. We slowed it down and that helped. But a night dose had my feet on fire and couldn’t sleep. I ended up having to take 10mg oxycodone which I don’t like taking--too much nausea and constipation. It did the trick though and the pain went away and I could get some sleep. But because I had to go with narcotics I woke up with what I call an opioid hangover and felt nauseous and block headed. This slows down the morning: I don’t want to eat, walk, or take my pills. However, that day we upped the dose of gabapentin, a medicine that helps with nerve pain and that seemed to help -- i wont say fix-- it. So now with scheduled gabapentin, my feet nerve pain should be under control. It’s all a process with trying things and hoping that trying one thing doesn’t cause a new thing.
In social news at the hospital. Thank you for all the cards! They are starting to fill up the walls and are visually lovely!
Also, my good friend from Pomona Kevin Graf is here! He has come for three days and we just hung out in the afternoon and evenings. It was super nice to have a buddy here to chat, play wingspan, and walk laps with. He leaves tonight to get back to Oakland.
In social news at the hospital. Thank you for all the cards! They are starting to fill up the walls and are visually lovely!
Also, my good friend from Pomona Kevin Graf is here! He has come for three days and we just hung out in the afternoon and evenings. It was super nice to have a buddy here to chat, play wingspan, and walk laps with. He leaves tonight to get back to Oakland.
2/7 update:
BREAKING NEWS: NEUTROPHILS ARE AT 10. I just found out 1 hour ago during rounds. This is really good news that the new immune system is starting to engraft. It also happened much earlier than I thought it would. I was expecting 3 weeks which would be next Thursday/Friday, but it happened early. Hopefully this was not a ruse. If it’s accurate, It should build from here. I’ll do another post once the neuts continue to climb.
BREAKING NEWS: NEUTROPHILS ARE AT 10. I just found out 1 hour ago during rounds. This is really good news that the new immune system is starting to engraft. It also happened much earlier than I thought it would. I was expecting 3 weeks which would be next Thursday/Friday, but it happened early. Hopefully this was not a ruse. If it’s accurate, It should build from here. I’ll do another post once the neuts continue to climb.
Until then get outside and enjoy the winter if you can. If you live in the PNW, try your hardest to enjoy
the rain!
the rain!
Completing some laps with Kevo!
Thanks for the update Derek, and very glad to hear the good news about the neutrophils! Thinking of you back in NYC and sending lots of love.
ReplyDeleteSounds like those Baby Stem Cells heard our chanting! Alan still takes Gabapentin for nerve pain three times a day (20 years later) - and I’m glad to hear it’s still what’s prescribed.
ReplyDeleteProgress. Slow, but progress. Great shot of Kevin and I had fun visiting with him, too. He's a good active listener--mighty fine attribute in a friend.
ReplyDeleteVery glad to hear the good news and that time is passing with help of quality friend visits.
ReplyDeleteWith Briana making the move to SDOT we’ve lost our direct point of contact for updates... our awesome colleague too! : ( Know that our little posse of cubicle mates continues to be rooting for you each step of the way!