i had this realization today. i feel like i've been betrayed. by my own body. and therefore, i can't believe any of the things my body might do are normal. every single thing that is odd or that i hadn't noticed before is now suspect. is it caused by my leukemia? is it really really aweful?
additionally today after 2 weeks of waiting on gleevec i finally asked the cancer care clinic to do a blood draw. sure enough my WBCC is back up to 88,000 (normal 4,000-10,000). it doesn't really make me trust my doctors or the clinic when they didn't keep track of this. i get that i need to responsible for my own health, but i wasn't expecting to have to be responsible in quite this way.
Friday, September 30, 2011
Thursday, September 29, 2011
insurance companies
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.
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.
my sister-in-law is raising money for leukemia
so my sister-in-law Sara Mader-Nauman is going to be running a marathon relay in Kansas City on the 15th of October that is fundraising for the Leukemia and Lymphoma Society. Anyone interested in helping sponsor can do so at this link: http://public.eventunited.com/
Wednesday, September 28, 2011
since then
we've been marking time since then trying to get the kinks worked out so that i can go on gleevec. it sounds like i should be getting gleevec mailed to me shortly. in the meantime, the waiting is getting scary. it's been more than a week, and i'm on no meds. i asked jeremy to call the cancer care clinic tomorrow and inquire. the waiting is scary.
so far, during the day i'm generally ok. i've been managing to work 3 hours most days, with my daughter amanda handling the other 3. most days i take a nap in the afternoon so i can function in the evening. a couple nights i've had horrrible dreams. last night was one of those nights.
i'm scared of what the gleevec will do to me. i'm scared it may not work. i'm trying my very best to not be afraid. to joke about it. occassionally trying to "guilt" my hub into something with a pathetic face and "but i've got cancer"
my sister came to visit. that was wonderful. i got, at least for a week to pretend it almost wasn't real. i wasn't on meds. we went to NCFF and had a great time. i only cried on her should a couple of times. i'm not good at being sick. i don't like admitting when i'm hurting. i have the "tough it out" attitude, which isn't always helpful. i'm trying to admit when i can't do more. and i'm carrying on. because really i have no choice. this somehow must become my new normal. but i can hardly admit it's real yet. i don't want it to be. it can't be. how can i have CML? i'm too--everything. young, healthy, etc. it's not fair. and i hate this. please just let me wake up god. and let this not be true.
so far, during the day i'm generally ok. i've been managing to work 3 hours most days, with my daughter amanda handling the other 3. most days i take a nap in the afternoon so i can function in the evening. a couple nights i've had horrrible dreams. last night was one of those nights.
i'm scared of what the gleevec will do to me. i'm scared it may not work. i'm trying my very best to not be afraid. to joke about it. occassionally trying to "guilt" my hub into something with a pathetic face and "but i've got cancer"
my sister came to visit. that was wonderful. i got, at least for a week to pretend it almost wasn't real. i wasn't on meds. we went to NCFF and had a great time. i only cried on her should a couple of times. i'm not good at being sick. i don't like admitting when i'm hurting. i have the "tough it out" attitude, which isn't always helpful. i'm trying to admit when i can't do more. and i'm carrying on. because really i have no choice. this somehow must become my new normal. but i can hardly admit it's real yet. i don't want it to be. it can't be. how can i have CML? i'm too--everything. young, healthy, etc. it's not fair. and i hate this. please just let me wake up god. and let this not be true.
hydrea
i'm trying to post all this at once while it is still reasonably fresh.
i started taking hydrea on thursday. i don't remember specifically when the mouth pain started but it was fairly quickly. i had to drive to la crosse with a friend on friday. we went for a blood draw. then left. the pain at the bone marrow biopsy location was incredible. i wouldn't recommend taking a 9 hour drive the day after, but my doc thought it woudl be fine.
we visited with friends while in la crosse. some that i needed to tell in person about this diagnosis. i was in pain. i cried. (i hate that) and i made rude jokes about having cancer.
by monday i was on a lower dose of hydrea. only taking 4 pills a day, instead of 6. my WBCC was down to 130,000 already. by thursday at my follow up visit i was off hydrea and my WBCC was 57,000.
i started taking hydrea on thursday. i don't remember specifically when the mouth pain started but it was fairly quickly. i had to drive to la crosse with a friend on friday. we went for a blood draw. then left. the pain at the bone marrow biopsy location was incredible. i wouldn't recommend taking a 9 hour drive the day after, but my doc thought it woudl be fine.
we visited with friends while in la crosse. some that i needed to tell in person about this diagnosis. i was in pain. i cried. (i hate that) and i made rude jokes about having cancer.
by monday i was on a lower dose of hydrea. only taking 4 pills a day, instead of 6. my WBCC was down to 130,000 already. by thursday at my follow up visit i was off hydrea and my WBCC was 57,000.
bone marrow biopsy.
jeremy got up the morning of the biopsy and told me he just didn't think he could watch. so i called several people and eventually got my aunt (a benedictine nun here in rapid city) to go along to pray with me. i'm a terrible catholic. i dont' go to church. i dont' really pray. but this morning i pulled out the rosary my dad made my mom years ago (that she had given to me after he died) and took it along. the doc was very nice. or as nice as anyone can be who is sticking a huge needle into your bone.
i won't describe the pain. suffice it to say that while he said it would feel like a bee sting, i think it only be like a bee sting if the bee were the size of my mini-cooper. what should have taken 20 minutes took almost 50 because my bones are uncooperative.
a friend had offered to bring us lunch when it was all over. after we got home she brought me quiche. i ate a few bites and was full. oh, this isn't surprising because i remember now, dr. babbit said my spleen which should be the size of a fist was what made her think i was pregant. it was the size of a basketball. OMG. sharon and i tried talk. my phone started ringing. and just wouldn't stop. first one person then another who had heard the news called. then the lab called. they hadn't gotten enough bone marrow and could i come in for a blood draw. sharon took me to that. what an awesome friend.
i won't describe the pain. suffice it to say that while he said it would feel like a bee sting, i think it only be like a bee sting if the bee were the size of my mini-cooper. what should have taken 20 minutes took almost 50 because my bones are uncooperative.
a friend had offered to bring us lunch when it was all over. after we got home she brought me quiche. i ate a few bites and was full. oh, this isn't surprising because i remember now, dr. babbit said my spleen which should be the size of a fist was what made her think i was pregant. it was the size of a basketball. OMG. sharon and i tried talk. my phone started ringing. and just wouldn't stop. first one person then another who had heard the news called. then the lab called. they hadn't gotten enough bone marrow and could i come in for a blood draw. sharon took me to that. what an awesome friend.
sept. 7
i slept well enough so that at 9am when my doc's office (actually my doctor apparently) called i was still asleep. Jeremy (my hub) didn't wake me up. about 9:30 i come downstairs looking for coffee and hear the news. My doctor wants to see both my husband and i as soon as possible at her office. like now. oh god. this can't be good. i know it's bad.
we drive over to the office and wait a couple of minutes then dr. babbet can see us. she comes in. her face looks terribly serious. i'm not sure exactly what she said. she starts out with explaining something about my white blood cell count. that it's really high. she says something about a normal WBCC being 5-6 thousand. and mine is 320 thousand. oh god. then she says i'm going to say some scary words. i remember thinking, i'm going to cry and i hate crying in public. "Chronic Myologenous Leukemia. we think you have it." i don't remember a lot else. the tears come. i can't contain them. i'm sure jeremy remembers a bit more. i don't. eventually i remember she says that she has this day and the next all planned out for me. that i am to go directly from here to the cancer care clinic. there is an oncologist waiting for me. and that tomorrow i'm to have a bone marrow biopsy. unfortunately i've watched House. the very words put me in a panic.
when i finally manage to stop crying dr. babbet--this lovely lady who i've only met yesterday gives me her home phone, her cell phone and her office phone and tells me to call day or night. anytime. ever. and gives me a hug. then we head for the cancer care clinic. on the way i remember wanting coffee. we stopped at starbucks.
the cancer care clinic is attatched to the hospital. there's special parking spots for cancer patients. we take one. WTF--this isn't real is it? surely this is a dream that i will wake up from momentarily. it can not be real. i'm young, i'm in better shape than i've been in years having just spent a year and a half losing 75 pounds. i feel fine. ok, a little tired, but fine. i can't have cancer. can i?
we go in. the receptionist is perhaps the dumbest person i've met since all this started. we tell her who we are and she says something like: "oh so it's like SURPRISE!" i burst into tears. again. my husband asks as we sit down, "how many people have hit her? and why isn't it hard enough?" everywhere i go this day, i'm in tears. the intake lady is nice. and very pregnant. and i cry while my husband talks to her. they offer me coffee. i go wait more. the nurse comes out--i think her name is Pat--she takes me back and starts asking questions and i cry more. the doc comes in--he reminds me of "beuller? beuller?" but i cry anyway. he says my white blood cell count is much too high. dangerously high. that it could kill me. and that they are going to put me on meds immediately to lower it. Hydrea. and that this disease, CML is easily treated with oral meds. that everything is going to be fine. i try to believe him. he says something about the bone marrow biopsy and i ask how painful it will be. "well, you wouldn't want to have one everyday". now i really don't believe him.
we go back to the pharmacy and get the meds. these aren't too terribly expensive, thank goodness. and head for home. i'm to take 3 pills am and pm and gout medicine to avoid the risk of that. i ask jeremy to call my family. i burst into tears everytime i think the word, let alone say it. i go to bed. the day is a blur. i'm sure i did more. i think we stopped at the yarn shop to tell amanda what the news was. i don't remember really. i texted a friend or two. and i asked another to stop over after work. i didn't want to tell her while she was at work. i think that was all on wednesday. it's hard to remember.
we drive over to the office and wait a couple of minutes then dr. babbet can see us. she comes in. her face looks terribly serious. i'm not sure exactly what she said. she starts out with explaining something about my white blood cell count. that it's really high. she says something about a normal WBCC being 5-6 thousand. and mine is 320 thousand. oh god. then she says i'm going to say some scary words. i remember thinking, i'm going to cry and i hate crying in public. "Chronic Myologenous Leukemia. we think you have it." i don't remember a lot else. the tears come. i can't contain them. i'm sure jeremy remembers a bit more. i don't. eventually i remember she says that she has this day and the next all planned out for me. that i am to go directly from here to the cancer care clinic. there is an oncologist waiting for me. and that tomorrow i'm to have a bone marrow biopsy. unfortunately i've watched House. the very words put me in a panic.
when i finally manage to stop crying dr. babbet--this lovely lady who i've only met yesterday gives me her home phone, her cell phone and her office phone and tells me to call day or night. anytime. ever. and gives me a hug. then we head for the cancer care clinic. on the way i remember wanting coffee. we stopped at starbucks.
the cancer care clinic is attatched to the hospital. there's special parking spots for cancer patients. we take one. WTF--this isn't real is it? surely this is a dream that i will wake up from momentarily. it can not be real. i'm young, i'm in better shape than i've been in years having just spent a year and a half losing 75 pounds. i feel fine. ok, a little tired, but fine. i can't have cancer. can i?
we go in. the receptionist is perhaps the dumbest person i've met since all this started. we tell her who we are and she says something like: "oh so it's like SURPRISE!" i burst into tears. again. my husband asks as we sit down, "how many people have hit her? and why isn't it hard enough?" everywhere i go this day, i'm in tears. the intake lady is nice. and very pregnant. and i cry while my husband talks to her. they offer me coffee. i go wait more. the nurse comes out--i think her name is Pat--she takes me back and starts asking questions and i cry more. the doc comes in--he reminds me of "beuller? beuller?" but i cry anyway. he says my white blood cell count is much too high. dangerously high. that it could kill me. and that they are going to put me on meds immediately to lower it. Hydrea. and that this disease, CML is easily treated with oral meds. that everything is going to be fine. i try to believe him. he says something about the bone marrow biopsy and i ask how painful it will be. "well, you wouldn't want to have one everyday". now i really don't believe him.
we go back to the pharmacy and get the meds. these aren't too terribly expensive, thank goodness. and head for home. i'm to take 3 pills am and pm and gout medicine to avoid the risk of that. i ask jeremy to call my family. i burst into tears everytime i think the word, let alone say it. i go to bed. the day is a blur. i'm sure i did more. i think we stopped at the yarn shop to tell amanda what the news was. i don't remember really. i texted a friend or two. and i asked another to stop over after work. i didn't want to tell her while she was at work. i think that was all on wednesday. it's hard to remember.
Sept 6
so, on sept. 6th i went in for a routine physical exam. we had just gotten insurance as of sept. 1 (thought we could finally afford it) and i hadn't had a pap smear in 9 years and figured i should have one. i laid down on the table and the doc asked if i was pregnant. "no" i answered. "are you sure?" "pretty sure" i say--feeling a little scared--i'm 43 (44 next month) and more kids are not my plan. she prods around and says "no i think you're pregnant--5 months. are you feeling any movement?" "no movement" i respond.
well, eventually she decides, no indeed, i am not pregnant and says "well maybe it's a really huge ovarian cyst. we'll send you for a cat scan and see what's going on in there". after 4 sticks and a blown blood vessel they manage to draw some blood, and send me off for a CT scan in about 5 hours.
unfortunately for me, i had not eaten breakfast that morning, and now i'm told to eat nothing until the CT scan, so i go home and start to worry. i'm "googling" what few symptoms i've seen--a funny stitch in my left side on some evenings, some bruises on my legs 3 weeks before, and a distented abdomen. i shouldn't have done that. i recommend not doing this. the results were scary--things like leukemia, hodgkins and lupus come up. (i jokingly tell my hub that it can't be lupus, it's never lupus! per dr. house).
the mammogram they have scheduled goes uneventfully, but the barium? it's aweful. i drink it like they tell me as quickly as i can. the lady doing the mammogram seems shocked that i have just drunk the damned stuff. she is also a bit shocked that i don't whine about how painful the mammogram is. i think i was too shocked to consider how mammogram felt. it was irrelevent. the CT scan is scaring me far to much to worry about anything else.
finally the CT scan. it is horrible. they put in a large bore needle so they can push the contrast solution quickly but before they do they blow another vein. i now have bruises in both elbows and blown veins in both hands. the contrast burns as they insert it. my arm is hurting where the IV is. and i'm terrified. by the time it's over i'm in tears. the nurse comes in (i haven't complained, what's the point? i just want it over) and is worried. as soon as they take out the IV tho, it's better.
i drive home and face some realities. i must prepare my family for this. it could be truly aweful and i can't spring it on them unannounced. so when i get home i call my mom. she's in cinci. we haven't spoken in a while. i explain that something (an unknown something) is wrong and i've just had a CT scan. i burst into tears. my mother now can't understand much of what i'm saying. and she's crying adn upset. eventually i promise to call as soon as i know more and hang up. then i call my sister in NC. she's not home yet. i leave a message askign her to call. my family has an SCA meeting to attend this evening so i go to that. trying my best to put on my game face. my sister marie calls while i'm in the meeting. i go in the bathroom to find some privacy to explain what's wrong and tell her i'll call her back in a while. when i get home after the meeting and dinner i cry more. she says to call back if i can't sleep. somehow tho, i managed to sleep mostly.
well, eventually she decides, no indeed, i am not pregnant and says "well maybe it's a really huge ovarian cyst. we'll send you for a cat scan and see what's going on in there". after 4 sticks and a blown blood vessel they manage to draw some blood, and send me off for a CT scan in about 5 hours.
unfortunately for me, i had not eaten breakfast that morning, and now i'm told to eat nothing until the CT scan, so i go home and start to worry. i'm "googling" what few symptoms i've seen--a funny stitch in my left side on some evenings, some bruises on my legs 3 weeks before, and a distented abdomen. i shouldn't have done that. i recommend not doing this. the results were scary--things like leukemia, hodgkins and lupus come up. (i jokingly tell my hub that it can't be lupus, it's never lupus! per dr. house).
the mammogram they have scheduled goes uneventfully, but the barium? it's aweful. i drink it like they tell me as quickly as i can. the lady doing the mammogram seems shocked that i have just drunk the damned stuff. she is also a bit shocked that i don't whine about how painful the mammogram is. i think i was too shocked to consider how mammogram felt. it was irrelevent. the CT scan is scaring me far to much to worry about anything else.
finally the CT scan. it is horrible. they put in a large bore needle so they can push the contrast solution quickly but before they do they blow another vein. i now have bruises in both elbows and blown veins in both hands. the contrast burns as they insert it. my arm is hurting where the IV is. and i'm terrified. by the time it's over i'm in tears. the nurse comes in (i haven't complained, what's the point? i just want it over) and is worried. as soon as they take out the IV tho, it's better.
i drive home and face some realities. i must prepare my family for this. it could be truly aweful and i can't spring it on them unannounced. so when i get home i call my mom. she's in cinci. we haven't spoken in a while. i explain that something (an unknown something) is wrong and i've just had a CT scan. i burst into tears. my mother now can't understand much of what i'm saying. and she's crying adn upset. eventually i promise to call as soon as i know more and hang up. then i call my sister in NC. she's not home yet. i leave a message askign her to call. my family has an SCA meeting to attend this evening so i go to that. trying my best to put on my game face. my sister marie calls while i'm in the meeting. i go in the bathroom to find some privacy to explain what's wrong and tell her i'll call her back in a while. when i get home after the meeting and dinner i cry more. she says to call back if i can't sleep. somehow tho, i managed to sleep mostly.
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