Tag Archives: Ganciclovir

Day +70

Well hello December!  Twenty-two shopping days until Christmas, and I can proudly say that I’m almost done mine.  Luckily, online shopping has made it so that I didn’t even have to step into a busy, germ filled store, but could sit quietly with a cup of tea browsing for gifts.

On the health front, things are good.  My follow-ups are now every two weeks, instead of weekly and I FINALLY finish the Ganciclovir next Wednesday.

I’m STILL struggling with nausea, and can’t seem to eliminate the olanzapine from my list of daily meds. The BMT team assures us that this is not that strange, and they also continue to remind us that everyone is different.

In happy news, my HAIR has started to GROW!! ….I mean…it’s really no big deal *wink* they’re fine little wispy hairs, but they’re definitely growing. My finger nails however, have started to peel. Yep, that’s as gross as it sounds, and it’s also pretty painful. Again, BMT docs say that it’s not unusual and not to worry, but it’s making day to day tasks like getting dressed, painful.

I don’t think that I mentioned it at the time, but the bottom of both of my feet also started to peel earlier in my recovery, and my lips are perpetually dry and peeling no matter the water I drink or the lip balm I apply. I joke that it’s like everything is trying to jump off of my body. My hair, my skin, and now my nails. It affirms just how toxic chemotherapy is to all of the body’s systems. A necessary evil of sorts, I know.

Our house is on it’s way to christmafied. The tree is up and lit waiting for the ornaments that we’ll hang this weekend, and thanks to momma we’ve enjoyed our first little sweets from our advent calendars that she never fails to supply. You’re never too old for chocolate in the morning!

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Day +58

snow-scene

Remember this?! It’s baaaaack. Freeimages.com/Margot H

It’s snowing. Big, wet, white, “winter has arrived” flakes.  While I know that this means that my life gets more challenging (think boots, ice, and cold hands that don’t work) it IS pretty, and snow makes everything feel ‘Christmasy’, don’t ya think?

My apologies for leaving you all wondering what has been going on over the past few weeks, but honestly, it’s been uneventful.  I’ve got a little over two weeks left of the daily infusions of Ganciclovir. My infusions are down to once a day, and a smaller dose. Homecare taught us how to maintain my port, and change the bag on the infusion pump, so we’re pretty self-sufficient. The nurse only comes once a week to change my dressing.

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The big bag, was my initial dose, everyday for two weeks. The little bag is my dose now, once a day.

The biggest news (!), is that I’ve reached the halfway point. Halfway to +100 days, the milestone for the transplant doctors before which infection is most dangerous, and things going sideways are the biggest concern.

I’m feeling pretty good. My energy level is already better than it was before the transplant (!!!), so that’s a great sign. I haven’t noticed a change in my CIDP symptoms, but we’re not expecting to, this early.

Remember that the goal of the transplant was to STOP the progression of the disease. They’ve been very clear that they don’t EXPECT an improvement, and if things do improve it will be several months (or years) from now. We stay hopeful.  Right before the transplant, I had another little slide in my symptoms, and it means I lost the ability to write by hand, and the walker has become more of a necessity. Even typing is slower, and less comfortable than ever. So…we’ve all agreed that even if I can reverse those things, we’ll be ecstatic.

My appetite is pretty much back to normal, while I do still seem to be nauseous more than I would like.  I’m not taking anything on an ongoing basis for nausea anymore, having just stopped the olanzapine a couple of days ago. I’m only taking pills four times a day now, instead of six!

I’m still bald(!) and waiting impatiently to see signs of growth. I think it will definitely help my anxiety once it starts to grow, because right now I still LOOK sick and that is proving to be more stressful psychologically than I thought it would be, especially when leaving the house.

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My STILL bald head

On that note, the hubs and I have been to a couple of matinees the past few weeks (when there is almost nobody there), and I have been shopping quickly, and at off peak times. I’ve been on many car rides, and started driving again (yay!) last week.  I remain hyperaware of my surroundings and anxious about being around people, but I have been cleared to eat out again and so even had veggie, and cooked SUSHI after a movie last week! (small victories!)

 


Day +37

Happy weekend everyone! We had a good week around here. Momma is finished her second Springbok puzzle, hubs and I continue our cribbage “tournament” and I continue to feel a little restless.

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Mom’s impressive, SECOND since she arrived, puzzle

On Tuesday  I had my weekly check-in at Module L and as usual I had blood work done. I mentioned last post that they removed my PICC line, and it was so nice to feel free to bathe unencumbered.

I purposely say “was” because late Tuesday afternoon, we got a call back from a BMT nurse. Remember, no news is good news? Well, the news was that my Cytomegalovirus (CMV) test came back showing reactivation. What exactly is CMV? Well for the nerds out there a full explanation go here.

Now, the pertinent bits (thanks Wikipedia):   “[CMV] is a member of the viral family known as Herpesviridae…most healthy people who are infected by [CMV] after birth have no symptoms. Some develop a syndrome similar to [mono]…with prolonged fever, and mild hepatitis. A sore throat is common…Primary CMV infection in patients with weakened immune systems can lead to serious disease. However, a more common problem is reactivation of the latent virus.” *waves hand*

CMV reactivation is something that they’ve been watching for (unbeknownst to me), so when the CMV titre started to rise, they were on it. For me, this means Ganciclovir – an antiviral medication given through IV. The course of drugs is twice a day for two weeks, followed by once a day for four. That’s six weeks, if you’re counting.

Luckily, I can do this at home! I am hooked up to a pump that is set to deliver the medication every twelve hours. The pump and medicine lives in a fanny pack I can carry around (hello 1990!). Home care comes once a day to change the bag of medicine. My port is being used for access since I (zealously) gave up my PICC line. The only real inconvenient annoyance is that the port is on my upper chest and cannot be covered like a PICC line can to bathe. So it’s sponge baths for this kid for the next six weeks. Ugh.

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My appetite is better. I’m still taking anti-nausea meds, but I imagine we’ll be tapering them in the next week or two…I hope. Taking meds eight times a day is kind of intense!