I desperately miss writing and apologize for not giving any
updates and being so way behind on getting back to emails and messages. Things
have been very difficult. I was in the hospital for 5 days last week. Extreme
pain and the need for more blood products brought me in. I had severe pain over
Labor Day weekend in my knees and my ankles, so bad that I could not walk. The
nights were awful. Poor Craig had to deal with my screaming, crying anxiety
attacks as I tried to handle the pain. I’d have Craig get me heat, then ice,
then stack my legs on pillows, try to straighten them in front of me. Nothing
worked.
While in the hospital, the goal was to titrate the pain
medicine so that we had a good balance between the woozy side effects of the
pain meds and keeping the pain under control. I’m home now and we’re not there
yet. Today was very difficult. I felt sloshed and so weak. I puked last night
after trying to get together my nighttime routine, then puked up a decent
amount of OJ this morning after all the exertion of bringing my laptop, foods,
and meds out onto the porch so I could enjoy some sun.
Everyone is very worried about me and wants me to accept
more help and keep in better touch, but honestly, to send a text message or
answer a phone call is so much work. I fall asleep and drop my phone while
trying to reply all the time. I can spend extended amounts of time just staring
into space and I hate it so much. I need to find some clarity. Obviously this
amount of pain medication is too much but I’m so afraid of the level of pain if
I come down.
My family and friends have been incredible whether it’s
taking me to the hospital, visiting me in the hospital, or Craig and my mom
being right there to get me whatever I need and make sure that I am
comfortable.
My platelets are still very low, hanging around 10,000.
Because of this, I am not able to continue on CEP oral chemo right now. I need
to be at least 75,000 to take it. However, I am still able to take the Rituxan
as it is a targeted antibody vs. traditional chemo and should not affect my
blood counts. I got my second transfusion on Friday. I’m putting a lot of hope
in this drug as I don’t know where else to turn. Again, thank you for the supportive emails and comments. I
look forward to when my head is clear again and I can get back to the craft
that brings me so much happiness. Right now however, it takes me 20 minutes to
write a short text message, so there won’t be any eloquent prose coming from
this girl. In fact, I’m dictating this to Craig right now.
