Today, Mon, X is in school. I'm determined to get myself on a healthy schedule. At 6:30 I wake up to ease the pain and nausea and get the adrenaline I need with meds. They'll kick in at 7 a, when x wakes. Then I've scheduled to take more: my pred, entorcort, etc. I try to take by priority but they're all important. I get some juice and an apple to eat. By 8 am or so maybe I'll have stomached them while getting x off to school. It was $500 for a remote car starter so I think I'm going to train X to turn on the car and heat. He's been scrapping it since he was 6. I've made Dr. Calls. I spoke with both Alyea's and O'Connor's office. Alyea will control my GVHD. Now it's Tues. And I haven't heard back from Mel and Alyea. Marc and anna are talking about putting me on 120 mg of pred. If the 60mg of pred, 30 mg of enterocort, and 1 mg of flurinef doesn't work by Fri. I'll take it too, again, as a life and death decision with hopes of a reasonable taper before the symptoms drive me, or my fam, crazy. My aunt b has come to the rescue with our bills. Aunt P has rescued me, taking me to appts, making them fun, and making sure I eat the best. She's extra mothering me, and I wish she could feel how wonderful it is. I was grieving today about the future plans I had that will now probably never come to fruition. I mourned the worse over the side story: not be able to open my house like an orphanage or to be able to care for all the people in their need that helped me grow and evolve to be who I am. Life really is about the journey. It's a marathon not a sprint. The plan was in motion by 21. The family, cape in place. My career coming along quickly to supplement this utopia I had created in my mind in part with my dad where we could develop a sustainable community where people could gather and fish, stay safely with assistance into old age or raise a well rounded family in nature among other great neighbors. Before cancer, the plan was all about logstics, money. How we were going to do it. Now I just wish we could. I had the right idea. Good intentions. I don't understand why me when so many people have no intentions or bad intentions, but its hard enough to consider "what could have been." I definately stay far away from the "why mes?" I'll focus on awesome aunt P, J, X everybody that lifts me up. You're my miracle.
Sent from my Verizon Wireless BlackBerry
Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.
He has since died, and I took on the cause of making cancer care more transparent for everybody.
Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."
I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.
I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."
1 comment:
True, those plans have not come to fruition yet, but you have helped so many people deal with/ prepare for/ think about/ help friends and family with: challenges,issues, and their own priorities. You have touched the future in a different way from your original plan, but you have certainly made a positive impact!
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