January 24th, 2013- My stomach has been continuing to cause me a significant amount of pain which made sleep difficult. I did eventually take some ativan and oxycodone and was able to get a bit of drugged sleep. For those of you that don’t know I really hate pain medicine due to the fact that I watched my Father pass away from cancer while being constantly doped up on morphine, oxycodone, and many others. It scares me to my very core thinking I will be stuck in a haze of pain medicine during this process and it makes me hold out longer than I maybe should before asking for a dose of anything. David and I are working hard to overcome this fear and keep my pain at a reasonable level.
Today has been a lot of questions with little being done for now. The ultrasound looked relatively good but one of my liver counts has been elevated slightly which is not surprising because many of the medicines I have been on are processed by the liver. The downside is that the next ideal chemotherapy regimen will be very hard on my liver so they need to ensure that everything is working at peak strength. They stopped several general preventative drugs for anti-fungal, anti-viral, and anti-bacterial due to the fact that they are all processed by the liver, in order to give it as much of a break as possible. They pulled in some additional consultants regarding my liver who will be continually following me during this next treatment.
We are still awaiting our meeting with the transplant consultant who is a sort of case worker that helps with scheduling and coordinating donors. We will hopefully meet her tomorrow so we can ask some additional questions and more importantly get the testing kits out for my brother and sister. David immediately asked yesterday if he could be tested and was told that it is extremely unlikely that we will be a match and that they have a near zero demand for white caucasian males since they make up a large percentage of the donor list. Also it would not be a covered expense.
My blood pressure and glucose levels stayed stable all night and throughout today so they are starting to lean towards the root cause being how we stopped the steroid. It is definitely good that it is not an infection but I am ready to be done with steroids so I can build back up my strength. I can barely get around on my own at this point and I am working very hard to even keep that amount of muscle.
Bryce came for a nice long visit today which was exactly what I needed after the news yesterday. Today was a sort of practice run for tomorrow because Grammy and Grampy are having to drop him with us for a few hours. We tried another new baby food today, sweet potatoes, and were met yet again with disdainful indifference. He seemed to enjoy the first few bites but then may have realized it wasn’t his usual cereal and decided against the whole thing. We got to keep him during his nap but with our limited options we just wheeled him around in his stroller while he slept. We “suped” up his ride today with some nice collapsible saddle bags to help with everything that continues to be lugged back and forth to the hospital. The best part of the day was when David imitated a hiccup and Bryce burst into gleeful laughter. We spent the next 20 minutes laughing with him as we made silly noises. I cannot wait for another extended visit tomorrow! It definitely is not the same as being home as expected but I will take every second with him to help keep how much I miss him at bay, not to mention how much hope he gives me and how high he keeps my spirits.
Mommy holding Bryce!
Sleepy little man curled up with covers turned blankie.
Bryce getting ready for his new baby food.