With the acute pain, suffering, and danger seemingly out of the way, I'm now open to feel emotions. And it's good. It really takes losing something to truly appreciate it. Fri. I'd accepted the order to increase my pred. Dose to 120mg despite feeling it would decrease my quality of life with the swelling, bloating, GERD, and hot flash side effects while probably decreasing my life span with further weakening my immune system, causing bone wasting and muscle wasting. With no other options, I felt lost. I kept hoping I could postpone and get better. I made a last ditch call to Dr. A who put the few stools I was having at night after testing food into perspective: it wasn't that bad. I could suck it up, take immodium or anything else to plug me up, and eat only "safe" foods. That's what I needed. That's what I chose. I'm taking some cramping and debilitating pain. My diet is nuts (literally), nutella, apples, oranges, juice drinks, chicken with tabouli, and deli turkey. Pudding works and shockingly, these skinny cow fudge bars. I'm hungry more than not but I can move! There was an unfortunate experiment with chicken and pesto. The pesto tasted so good with its cheeses.... Damn them. I took my immodium first. I'd given the food the 2hr time frame so it could stick me to the toilet if that would happen. Or so I thought. At 2:30 the cramps and gas hit sending me doubled over to the toilet, emptying my bowel. Meanwhile, x gets out of school at 2:45. I can't leave the toilet to get the phone at 2:35. Somehow I work a toilet hiatus and call J while running back to the other Jon, thanking God along the way that our house is in the middle of X's school and J's work, which are only 5 min. Apart themselves. I dragged J out of his meeting to bring x to me, and luckily, it was just an episode. The bad pain, the suffering, just comes in semi-controllable episodes now. I finally got IV hydration set up, which shouldn't have been a stress I needed to request, but I did. I was passing out. My BUN was 150. My creatanine 1.5. These kidney function tests insinuates severe dehydration with starting kidney failure. Now palliative care will come to my home three times weekly to keep those kidneys working. I saw my urologist, Dr. Pais, before Anna. My right kidney has been hurting more. I can barely pee. Even though my stent is metal, should be able to stay for a year, and possibly unbendable, mine may be clogged. Since I am technically on treatment hiatus and labs look good, the stent is getting replaced Fri. Yes, in two days. I have revlomid if I need to take chemo. I've been financially approved, but I don't want to. I am meeting with Dr. O on Jan. 24th (next Tues) to discuss signing me up for a trial, all of which had ended in Jan. And had not been available. There is so much going on. This bout of illness has effected x, especially, severely. X doesn't want me driving due to my passing out. He doesn't want me alone. He follows me around ready to catch. He's had anxiety attacks, but he is talking openly about his fears. He's afraid I'm going to die, And this time, we all shared in our fears, honestly, together. We're all in this together.
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."