Light of day
Monday mornings are always busy times in the hospital. The doctors and nurses and specialists descend upon the room early and often to start making rounds and decisions and changes to treatments and medications. My old and most recent roomie, Bria, had the privilege of spending the last few nights in the hospital with me. We stayed up late talking and watching dumb movies until I inevitably fell asleep in the middle of a sentence. It was a blessing to have a friend here just for me although I feel guilt that all she saw of Columbus was my hospital, a friend’s house where she took showers and then came back to sit with me. She claims this is world’s most comfortable reclining bed and I’d have to trust her since she was always still passed out asleep while I was enjoying my now famous hospital breakfast that I’m already craving at 11:45 pm.
So, she made her way home today but the joy brought with her will stay. I was still on bedrest when she got here but before she left today she walked me down the hall to a bank of windows that I have not seen out without being in a bed. My Dad is headed back to to Tucson bright and early tomorrow morning too. He has been a fantastic help here not just for me but for Jeffrey and the kids and has given the other grandparents reprieve from the caregiving. Grandpa Carter has done his best to get those kids into shape with organizing a cleaning of the basement and my car and insisting that they do things like put their dishes away when they are done. It’s like I’ve been raising cave children! They love him for the football on the trampoline game and the air hockey and the snuggles on the couch with movies. I feel immensely troubled that my children have to have a sick mom but these bonding experiences with other caregivers have proven to be very valuable. I dare say that they might do a better job than myself. My dad and Jeffrey took me outside today for the first time in close to 2 weeks to the front entrance by the fountains. I was less chained to lines but still covered by a mask. I wore a fashionable scarf and fedora with my gold Sperry’s. I keep trying.
I am now fully unhooked from hospital equipment. My IV was unhooked yesterday since I am receiving adequate fluids orally and they are discontinuing the IV antibiotics. I was hooked to the IV briefly this afternoon to receive a transfusion of cryoprecipitate in preparation for tomorrows procedures. I’m trying not to think about it but I am getting a lumbar puncture with chemo injected into the CNS followed by a bone marrow aspiration and biopsy. I’m asking for extra drugs this time. The spinal headache from the last LP was miserable and lasted more than a week and I don’t know if people ever get used to big ass needles coring into their hipbones. It was originally suggested that I go home Tuesday but with all this going on we want to make sure I don’t get another headache and we’d also like to hear preliminary results from the bone marrow. This is the only way to test and get an answer on progress. They are looking for B-cell blasts (cancer) in the bone marrow. This tells them if I am in remission or not. If you all remember, I was clean according to the second bone marrow biopsy but that was after a dose of vincristine. They have not been able to continue that chemo med because of my autonomic neuropathy that has resulted in a severe orthostatic heart rate and caused all kinds of trouble. The results of the bone marrow biopsy tomorrow will determine if I continue the induction (intense) phase of chemo or if I move onto the consolidation phase. Just waiting.
The plan is to go home Wednesday now if everything goes well. They guys started cleaning out my room since it’s become very home like. Once I go home the intense schedule continues. Even though I can’t drive I will need to be at the hospital 3-5 days a week for the first couple of weeks for labs and chemo and appointments. I have follow ups with the audiologist and with the voice and dysphagia clinic for a FEES. Maybe after that it will settle into a once or twice a week routine. I will still be highly dependent on childcare and Jeffrey to drive me.
Pic outside with my dad. Paranoid Jeffrey wouldn’t let me take off my mask. It’s okay though, I have a massive moonface from the prednisone.