I am doing a dialysis treatment before heading to the airport to hopefully make it to Illinois today. We don’t have assigned seats on the leg from Atlanta to Bloomington so Greg says that is like standby and he had me sort of worked in a tizzy last night. Course the steroids aggravated it. Ah well. If something happens, we’ll deal with it. If we get stuck in Atlanta for the night, we’ll just visit with Andrew and Lindsey and find our way to Illinois on Friday! I am very much looking forward to time with my sister and her kids, just hanging, its the emotional boost I need right now.
I just finished a full round with Cytoxan (500 mg) and Velcade at 1.6 mg/ml or whatever plus the Dex all the way at 40 mg, all on Tuesdays. I had the Cytoxan on Tuesdays 1, 2, and 3, then just the Velcade and Dex, then this Tuesday it was only the Dex, considered an Off Week. It all starts again next Tuesday and I would say the cycle went relatively well, I can handle it again, and at those doses. There has been nausea, cramping, and I have a loss of appetite plus food has no flavor. I caught a bad cold that really wiped me out and I ended up getting platelets twice and a unit of blood once during the cycle, but all in all very manageable. Of course I would rather get into remission and forego all the back and forth to the clinic and laying around at home and middle-of-the-night pukies and crampings when they occur, but this is just the reality of the battle.
I am very grateful for roommates Melissa and Madalize, they have been such tremendous help around here, not to mention fun, and companionship. Greg has had several trips and had the peace of mind of knowing I am well cared for in his absence. My blood counts were running terribly low and I had trouble getting from room to room even, or standing to shower, or preparing a meal, etc. That part I think is the most difficult, just feeling so crappy but being alert, wanting to do things, but unable.
A lot has been going on in relationships in my life, some good, some not. I’ll summarize. Lindsey and I have exchanged text messages here and there and things are friendly, we have even chatted briefly on the phone. I like the place we are in, and I am happy for her and her new life and glad the wedding all went off the way it did. While at times I really miss being a bigger part of her life and really knowing her but that is something I just accept, that we both moved on and the level at which our relationship is right now is probably the best we can hope for going forward. I will ALWAYS feel like so much of it has to do with her Mom, but that doesn’t change anything and is just petty. Instead I try to be happy that she is close with her Mom, that she has that opportunity, I certainly miss my Mom and would love to have her in my life. All the reasons I don’t like Lindsey’s Mom hold true and probably always will, it has to do with who we are, so that’s that. It will be interesting to see what the holidays hold, then the subsequent first grandbaby (Jonathan’s girlfriend) and stuff like that. But I am certainly not going to tangle/ be in negative environments/ let any of it bother my peace of mind.
I finally reached my sister Karla, I had been calling and calling and only getting the machine. She seems to not know what to do with me, to still bear a grudge about things I never truly understood, and conversing with her really makes me feel like I am bothering her. She doesn’t laugh, she doesn’t seem to enjoy our conversation or really care what is going on here, but she will tell about her kids some and what they have been up to and how busy and popular they are. I miss the kids to my very core but its becoming apparent to me that the days of bopping down to Florida to visit and do things with them are gone, Karla just doesn’t want me there. I was not in the best of health when I went back in February and she doesn’t do “outside the norm” very well. Not in her bandwidth. Though I would never wish tragedy or anything like that on her, I can’t help but wonder how she will handle when things really stray from the usual, manageable, controllable pattern of her life. With four kids, there is bound to be some sort of excitement like that in her life. Thus far she has led what anyone would call a very blessed life, except the deaths of our parents, and she did admit to me that she still struggles with some issues around Mom’s death. Which involves the grudge against me, which is a very long story. My treatment is done and we need to head to airport so I need to wrap this up for now.
Something has me walking around more sensitive, insightful, and at times even angst-y. Could be the steroids.