This morning I sit here trying to rest since 2:15am, it’s now 5:46 as I begin to write this article long or short as it may be. I was supposed to get IVIG yesterday and today but I woke up at 5am and got showered(takes many spoons(energy) out of me) and then packed and was at the hospital well before scheduled with insurance cards and all ready for them as per usual. But apparently the appointment my awesome mother, an RN if you didn’t know by now, had verified both with the doctor’s office and the hospital was not in, therefore I wasn’t scheduled and if I wanted IVIG I’d have to wait til 10am to be seated for an 8 hour infusion, not ideal considering it takes time to get a line in, get pre-meds, and get the IVIG itself.
Well I was pissed off to say the least and it made me quite depressed for the remainder of my day, until they called to verify at 8am today I will be assured treatment. I thanked the woman and hung up and thought to myself this is why I take oral chemotherapy. If I left it in the hands of the hospital to set up daily infusions I’d likely miss half of them and be dead within a few weeks. yep, they’re good like that. In fact I even told my parents and general practitioner I have the feeling that I’m dying which I’ve experienced for real before I’ve come close a few times during this furious battle, this will be the 6th time I’ve looked death in the face. I have torn abdominal muscles because they’re so fragile, I’m sore all over sure to a CSS flare as well as lots of falls from the neuropathy, and lastly my breathing is going down the tubes again. I am in pain to the point where I barely feel my daily migraines all I can feel that hurts is the clusters and guess what last time they switched tanks they left me with a low flow regulator and a smaller tank(not and H-tank and my reg only goes to 8 now FAIL) than I need so I can’t even stop the clusters now! But the bodily pain has become terrible my muscle feels as if it’s hanging off my bones, I feel weighed down, like there are bricks on my eyelids at times. I am now in a wheelchair often and using a walker when possible, which is getting rarer and harder with each passing day.
Anyways that’s how my treatment is going both the iVIG and Cytoxan chemotherapy have been ineffective at this point, still hoping for remission soon from this nightmare. I have plenty of other problems to tackle afterwards. Sadly folks my battle is far from over but I’m here and I’m still waiting it just takes a hell of a lot of effort I’m drenched in sweat after writing this and the poetry earlier. I think before we leave for the hospital I’ll post this then reward myself with a ginger ale to quell any nausea I’m having. Soon I should be able to take more valium and oxycodone for arms, legs, neck, and upper back pain, at least I hope I can.