so, i've been in a holding pattern for gleevec now for about two weeks. earlier this week i started getting really nervous about that. today we got the news that my insurance company is investigating whether or not my CML is a pre-existing condition, because our insurance has a pre-existing clause. it could take as long as a month or more for them to decide this.
thank goodness for the company that will be sending out 3 months supply free shortly. but still. if it were not for companies like this one that will supply it for free, my CML could quickly advance into a blast stage, or even worse, spontaneously morph into AML instead. horrifying. it makes me wonder how on earth people with a lot less money and time and resources handle all this. with a husband who is a lawyer calling the insurance company and taking care of that (he deals daily with insurance companies), and my daughter here absorbing the work that i just can't handle, and friends stepping up and offering whatever support i need, i am truly blessed.
interesting news: apparently rapid city does not have a leukemia and lymphoma society. DAMN. i went looking. the closest option is several states away. i need to figure out what it takes to fix this and look for help. i went looking because i was looking for a support group. the only ones i can find are general cancer or specific cancer (not leukemia). a friend who has dealt with such things agreed with my assessment that what i need is probably counseling, not a support group for now.
so, i think that i'm going to call the cancer care clinic tomorrow and see if they have counselors on staff. i clearly need some help at this point since my fears are now affecting my sleep. i'm regularly having trouble sleeping because i have nightmares. some gross and nasty, some just sad and aweful. so when i wake up i can't get back to sleep, and then later i have difficulty getting to sleep because i'm worried about more dreams. all of the dreams involve being sick or dying. very telling.
i'm worried about my kids. i'm not sure they understand all this at all. i wonder if we all need counseling.
hopefully tomorrow will be better.
Counseling is a smart idea, for everyone. Sometimes it's just good to be able to say things to someone you can trust, but who you don't have an emotional connection to is helpful. Your whole family is probably censoring to try to make things easier on each other, which is good and important, but needs an outlet too. I think of you often, and send good vibes.
ReplyDeleteWow - apparently trouble typing today. I have an extra 'is helpful in that paragraph...
ReplyDeleteCounseling is a great idea! Getting you on track dealing with things is a first step. Maybe after a few sessions you can ask them is they might want to attend one. Talk with the counselor and maybe they can help work something out too.
ReplyDeletemaybe see if there's a cancer navigator in your city. my mom is one for breast cancer, and she says it really helps survival rates.
ReplyDelete