Slept from midnight to 3am. Can't sleep because today feels like the End of the World (as I know it). Prednisone-enhanced anxiety level is high this morning. I lost my father a year ago this month. I moved back to Ohio a year ago to be closer to him as his health was failing. Two days after I moved he passed away.
Today my job ends. In January of 2001, I made the adjustment from a contractor to a fulltime employee. I was tired of being on the run as a computer consultant, hopping from contract to conctract and moving 5 times in the last 4 years. I felt like I was ready to settle down. Now I'm losing my fulltime job. I feel like a fugitive.
On June 1, 2001, I was diagnosed with Leukemia. I have not been working since then. I have spent 50% of my time in the hospital in the last 6 months. The disease by itself has been an incredible strain with so many unknowns and surprises, that neither my oncologist or I have been able to predict my chemotherapy schedule with any accuracy. This has been a stress to everyone associated with me (family, friends, job, etc).
My biggest concern is my health. Continued medical coverage is offered through COBRA (I will now be responsible for the entire payment--however much that is), though I have not yet seen anything in writing. I am worried about keeping the same oncologist, hospital, and chemotherapy plan. I do not yet know whether my lifetime limits will change, whether or not the amount of coverage for individual procedures under COBRA is the same, or for how long COBRA will be available to me. Even though my Hyper-CVAD chemotherapy will probably finish in Jan-Feb 2002, I'm still concerned about the 2 years of maintenance therapy that follow. Since I am losing my job, if I reapply, will I be covered under insurance? Or will I be denied coverage, since I now have a pre-existing, high-risk condition? Will this be the same dilemma at any other job? I don't know...just like everything else.
I have never felt so absolutely helpless and incredibly incompetent in all of my life. And the prednisone only exaggerates the stress. I cannot begin to describe how unbearably humiliating it is to burst into heaves of sobbing and tears at any given moment...anywhere and in front of anybody. And to not be able to maintain control of anger or anxiety is difficult as well. The smallest of things can cause me to snap back at someone. Even if I do "control" the anger, I can feel my face flush, my blood pressure rise, and my heart rate quicken. In short, I am a wreck. Through this whole ordeal, I have tried my best to not be angry at what I've lost and what I don't have and to not feel sorry for myself. This morning, I should probably not be writing as I am sleepless, drugged, and having a half-box-of-Kleenex prednisone episode.
I have friends who've been faithful to transport me to the hospital or the doctor's office several times a week since June. My family has made the 200-mile round trip drive EVERY weekend since June to visit me and give me support. They've been faithful in picking up my mail, shopping and running errands for me, doing my laundry, and keeping my apartment clean. My sister (visiting over Thanksgiving with her family) gave a couple days of her time going through all my medical records, helping me apply for financial aid, and got me up-to-date on all my immediate outstanding medical bills. I have a friend who's an interior designer who graciously gave of her time and energy at the beginning of the summer to get my apartment to a "livable" state for a leukemia patient while I was stuck in the hospital. I've had many folks send cards and emails, a number of people have visited or called, and many people and churches (some people I've never met and some churches I've never visited) have been faithful to pray as well. For all of these people, I am overwhelmed and thankful for their continued support. Today I am physically weak, mentally frazzled, and emotionally distraut. I do not even know what to ask for to make things better. Right now, I'm a mess. Sigh. Things have worked out so far. Things will be better later, too. Right now, I'm just not coping too well. Writing about it has helped. I'll sign on later in a happier state at some later time with something good happening. Adios for now.
Nov 28: Home
Wheee! I'm home. Unfortunately, my sleep schedule is still messed up...and no sleep meds at home. A scant 4 hrs of sleep last night, but still feel amazingly good. I've been off the antibiotic vancomycin since 8:00am Monday morning and have no signs of the staph infection so far (VERY thankful). I may be able to keep the Groshong Catheter. A few birding friends of mine are carting me up to Lake Erie today go birding. Smile. This will be considerably more activity than I've seen in the hospital for the last 3 wks. Glad I'm a passenger...
Nov 27: Hospital/Home
The joy of springing outta this place THIS AFTERNOON has overrun this morning's fat-and-ugly 'roid emotion. Yippee. I can hardly believe it! Wheee. Cartwheel. Back flip. Ouch. Must celebrate with moderation... Blood counts are on the rise. Blood work Thursday. Yahoo!