Well, I’ve had a minor setback. Last week we tried to taper my
immunosuppressant medication and it was a disaster. I broke out in a bright red rash on my hands,
arms, chest, neck & back. We had to
come back from our trip down to Pagosa Springs 2 days early as the rash quickly
spread to my face. This weekend I had to
make a trip downtown to the Emergency Room (thankfully Dr. Nash was the on-call
doc at the clinic over the weekend, so he was able to meet me at the ER and
look at my rash). He agreed that it had
progressed beyond just a minor rash and that it needed to be treated
immediately to avoid permanent damage to my skin in those areas. So, at the ER they gave me a MEGA dose of
steroids via IV (first time in 6 months that I wished I still had my central
line…those tubes hanging out of my chest would have come in handy since they
had to poke me twice and draw 4 bottles and 8 vials of blood to run all sorts
of labs). I had never had them draw blood
into bottles before, but they drew 4 bottles (size of the old small coke
bottles) that mixed with some solution so they could culture them & make
sure I don’t have any sort of blood infection in addition to the GVHD
rash. The ER visit was surprisingly
quick and I was out of there in less than 3 hrs (unheard of as far as my
experience working in local Emergency Departments!) I filled 3 new prescriptions (pain meds,
oral steroids & a higher potency steroid cream to apply to my skin.)
I am getting better day by day…I would say that my rash is
about 30% improved and certainly isn’t as “angry-looking” as it had been. It still looks like a really bad sunburn but
at least it doesn’t feel “blistery” like it did over the weekend. Aside from the rash, no other GVHD symptoms
except a very minor mouth sore. Dr. Nash
thinks that the super high dose of oral steroids that I’m going to be on for
the next 6-8 week should help with the “mucositis” (mouth sore) as well.
As a result of being put on the super high dose of steroids
and having to increase my immunosuppressant medication again, I will be even
more immune-compromised than I have been in a while. We are on a “code Clorox” protocol here at
the Voss household and everything must be wiped down with Lysol/Clorox wipes
daily again. L I have to wear a mask out in crowded public
places again, and need to really watch what I eat since the massive dose of
steroids makes me SUPER hungry. I have
worked really hard recently to lose weight and I don’t want to blow it! I am also going to have to be really careful
about the possibility that the steroids might mess up my blood sugars. I have never had blood sugar issues, but I do
remember that when I took steroids back in February as part of my very first
chemotherapy the docs and nurses were really concerned about how it affected my
blood glucose and I had to take insulin shots temporarily because it got so out
of control. Please pray that we can keep
my blood sugars under control and that the steroids do the work they need to do
without wreaking havoc on my system, appetite, etc.
In other news, we are looking forward to the Light the Night
walk on Thursday. My dad will be flying
into town to walk with us and we have several local friends and family members
who will be walking around Washington Park with us that evening! J Thanks to everyone who has so generously
donated to our fundraising efforts, you are amazing and have made a difference
in the lives of blood cancer patients and their families! On Thursday night @ 7:30pm, we’ll have our
first annual “Go Cells Go” walk and I’ll post pictures to the blog afterwards J
-Chellie
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