Confections For Cats

Texts between me and Allison When Mathew ended up in the hospital again with a fever in such a short span of time, I felt like I was doing something wrong or not doing something that needed to be done. My other experiences with someone going through cancer treatments was that they went for chemo and for the most part, went on with their lives as if they were just a bit sick. They went to work, enjoyed their homes and families. They didn’t spend each day in pain or being rushed to the hospital and having to spend days on end with fevers and infections. I thought I was failing as a caregiver. Mat woke up with a fever so they are checking  for infections and took a chest X-ray Sent April 5 Ugh. Now he has to stay til white count comes back  up. That stinks but it’s probably nothing. What did  Dr. Knight say about the celiac block? Received April 5 I just mentioned to the other pain  doc that was here today and he said it...

Mathew is sick enough that his writing deteriorates for a few days. HIs cousin Allison comes for a visit and two caregiver tips. Mathew’s Journal 4-4-14 email Dr Pharr email Drupon and Virginia email Ralph and Paula update Carol update Allyson call Stephanie update Brookie Then his handwriting goes downhill. to get home    billiary infection            can’t be sure             blood cultures negative but if it was there it was isolated - still using Texts Between Me and Allison His Neutrophil count is down to 100. He needs blood today. Sent April 3 Was thinking of coming to visit today. Is it a good day? Rec’d  April 4 Sure!! We could use something cheerful. His white count is even lower today. Sent April 4 Great. Can you send me the hospital address? Rec’d April 4 Also, if he would like some ...

Mathew’s Journal  4-2-14 Writing small vignettes. I need to organize that book that I’ve been working on for so long and it just feels like clutter A lot of useless words with a lot of useful words in between. Thinking about cigars and culture and a sense of self-importance with old bandmates, sure we would be signed by now. -not aware of the numerous problems and complications that would arise within our lives. Joseph and I have grown more distant but a lot of it is I don’t think he knows how to cope with what’s going on with me. Me lying in a hospital bed in a puddle of the hair that’s shed from my head. And all the other fluids that leak from my tubes. And my tubes that pass drugs to me to help cope with the terrible, but hopeful shifts in my abdomen. My phone seems to sing the most when I am sleeping. Not one of those normal sleeps where it is easy to wake. But rather the type of sleep where you are fighting off the dreams and tendrils of sickne...

Mathew’s Journal  4-2-14 Sometimes I don’t know what I am writing about anymore. It seems like my pen is just moving across the page.  I know I feel guilty for my disease but I don’t know why. Maybe I have some indication as to why I perceive it to be my fault. The stabbing pain in my abdomen keeps reappearing and disappearing. And I feel like shouting at the top of my lungs which I was doing a couple of days ago in the DRC when Dr. Knight was trying to figure out what type of medicine to give me. She gripped my hand and told me it would be okay. The next day there are many adjustments in my medicine. I fall asleep and dream that I am hiding from a strange society that doesn’t want me. I live in an old gray minivan and a tentative compatriot helps me fish (illegible) worms that look like IV lines out of my skin.

From Mathew’s Journal 4-5-14 “I lie awake in my pain bed metallic noises chirping from my strange computer  companion”

Up until this point, everything in Mathew’s journal, my notes, and texts have coincided, but shortly after this point, there are two levels of activity.  The things that happened during this time medically and with everyone around Mathew and Mathew’s thoughts and feelings. This is what happens when he has a very high fever or an infection. So I will try to keep the two clear for the next few blog posts. I’ve mentioned before that in Mathew’s journal, he kept pages of “ins and outs”.  On 4-1-14 he mentions “bili bag started draining again yesterday, but the nurses are keeping track of the measurements. 4-1-14  “Bili bag keeps filling up rapidly. Maybe that has to do with the clog and the pain. Or maybe there is an infection in the bill bag. ** Mathew’s Journal 4-2-14 A lot of times I look in the bathroom mirror and ask “What happened to my body?” Before I get into bed I notice that my sheets are filled with my thinning hair. Notes with ...

From Mathew’s Journal 4-1-14 When the pain is this intense it makes it hard to arouse Bodhicitta. 4-2-14 I am waking up in the hospital bed not fully moving. My Mother is talking to the nurse about me. Apparently, the nurse has a child that survived cancer. I hear my Mother say distressed. “He is starting to look like he has cancer.” They speak for a few more minutes before I let them know I’m awake. I think about all the things I have to write about, but I’m having trouble remembering what happened yesterday. Apparently twice in a row, I’ve eaten Skittles while they injected me with Ativan in my new port. I do remember using Ativan more frequently. The pain doctor, Dr. Knight, asks me if I’m depressed as I am not making eye contact with her. The truth is, is that I’m depressed and now the sobs wanting to escape are causing pain to shoot up my bill drain. The pain that is similar to when I breathe.