people ask often what they do to help me out. it's hard to answer that. i'm lucky so far, and i don't need much other than the money to keep paying for the insurance that will pay for my care. however, and it's a big HOWEVER.
lots of people with my disease need much more than this. what can you do to help? donate money to the leukemia and lymphoma society. they normally have a fund that helps people like me pay co-pays and such, but it is closed currently because there is no money. donate blood and blood products. when and if leukemia advances people living with it require blood transfusions and platelets. register for the bone marrow registry. this, this is huge. until about 10 years ago all people living with CML ended up with a bone marrow transplant to try to survive. there are still plenty of people living with leukemia who must get a transplant. if they can. if they can find a match.
finally.... and perhaps most importantly... whether you believe in prayer or positive thoughts or whatever, send all of that you can my way! and know that whatever you do, i truly appreciate it!
hugs
rita
Friday, October 7, 2011
decisions decisions...
so, as of now i will be going back to dr. robinson to see how that goes once i am on gleevec. i'm going to try to assume that all this stuff that happened happened mostly because i wasn't on the regular regimen of care. as frustrated as i am, driving to mayo and back once a month or so is also a hassle, so we'll try one more time with this.
my foot is far better altho i continue taking lots of ibuprofen to deal with swelling and pain. otherwise, i've had a largely uneventful couple of days on a hte health front. (thank goodness). i don't need any more issues. really.
on the other hand i'm dealing with the ridiculousness that is rapid city. apparently the city allows an unlimited number of people to purchase construction parking permits. they pay about cost of a single parking ticket per day to park all day. only construction people are allowed these permits. and to boot, they misbehave. we watched today as a construction person ran over and stuck an orange cone in an empty parking spot. then a few minutes later a construction vehicle showed up, moved the orange cone and parked there. this is all while we counted that 15 construction trucks (the ones we could identify) were parked in front of the yarn shop. and they had blocked off the half block of parking across the street. when i confronted a supervisor, he said he had no control over where subcontractors parked, and that it was the city's fault. when i called the police they said it was the city council's fault. i guess i'll be attending the next city council meeting with an agenda. UGH.
my foot is far better altho i continue taking lots of ibuprofen to deal with swelling and pain. otherwise, i've had a largely uneventful couple of days on a hte health front. (thank goodness). i don't need any more issues. really.
on the other hand i'm dealing with the ridiculousness that is rapid city. apparently the city allows an unlimited number of people to purchase construction parking permits. they pay about cost of a single parking ticket per day to park all day. only construction people are allowed these permits. and to boot, they misbehave. we watched today as a construction person ran over and stuck an orange cone in an empty parking spot. then a few minutes later a construction vehicle showed up, moved the orange cone and parked there. this is all while we counted that 15 construction trucks (the ones we could identify) were parked in front of the yarn shop. and they had blocked off the half block of parking across the street. when i confronted a supervisor, he said he had no control over where subcontractors parked, and that it was the city's fault. when i called the police they said it was the city council's fault. i guess i'll be attending the next city council meeting with an agenda. UGH.
Thursday, October 6, 2011
and we're back....
today i got a call saying that i could not see another oncologist here, and that i could either see dr. robinson or get referred to mayo. what a mess. i had kind of gotten used to the idea that i was going to see a different doc here and wouldn't have to go to mayo yet. and now.... now we're back to square one. what to do, what to do? do i give dr. robinson one more chance and hope that now he knows that i am upset he acts differently? (only yesterday he told me i had misunderstood the director) or do i instead drive 9 hours and see mayo, but not for a while as they may not be able to fit me in immediately?
i hate this.
i hate this.
Wednesday, October 5, 2011
good stuff and a few remaining not good things.
so, i've found out that there are two hemotologists at the clinic that i've been going to. i'm supposed to start seeing one of them momentarily. hopefully that will be better. i talked to the clinic's director who told me that most hemotological stuff is referred to mayo or denver. not sure how i got the short straw, of not only no referral to there, but no referral even to a hemotologist. but after discussion dr. robinson called and after initially acting like he was just checking in with me, finally i pointed out that i'd spoken with paul, the director and got a chance to point out how poorly i thought he'd treated me and asked to be referred to a hemotologist.
next news: my gleevec is going to be supplied by a company that will do it for free. no idea why, but this is good news as well. it shipped today. :-) YAY. finally things feel a bit like they are moving in the right direction.
more good stuff: my gout seems to be easing substantially altho my right foot is still rather swollen and sore. it is however nothing like it was yesterday.
the bad stuff remains: my tongue feels like i burned it seriously, and has a nasty raw spot on the end. doesn't really seem to be a good fix for this. additionally, i'm having some issues with generally feeling down and having a hard time dealing with stuff. that sucks.
i think i need to actually start knitting again. i haven't knitted most of the summer due to lack of inspiration. maybe that will cheer me up a bit.
next news: my gleevec is going to be supplied by a company that will do it for free. no idea why, but this is good news as well. it shipped today. :-) YAY. finally things feel a bit like they are moving in the right direction.
more good stuff: my gout seems to be easing substantially altho my right foot is still rather swollen and sore. it is however nothing like it was yesterday.
the bad stuff remains: my tongue feels like i burned it seriously, and has a nasty raw spot on the end. doesn't really seem to be a good fix for this. additionally, i'm having some issues with generally feeling down and having a hard time dealing with stuff. that sucks.
i think i need to actually start knitting again. i haven't knitted most of the summer due to lack of inspiration. maybe that will cheer me up a bit.
Tuesday, October 4, 2011
if i'm a mutation...
...where the hell are my super powers? i want my SUPER POWER!
well, on the good side i woke up in the middle of the night (one of those oh god, did i turn that off at work things--i had not) and my foot is much much better.
well, on the good side i woke up in the middle of the night (one of those oh god, did i turn that off at work things--i had not) and my foot is much much better.
Monday, October 3, 2011
gout
yup, it's gout. i went to my gp today, because my oncologist sent me there. second blood draw of the day. erg. extra gout meds, lots of advil, and no gleevec for now.
good note: insurance has determined indeed this is not a pre-existing condition (brilliant of them) and so on wednesday when we hear for sure about the gleevec program i'll be filling the scrip one way or the other. thank goodness.
on the other hand, after being told by my gp that dr. robinson was definitely going to call today, he did not. they did call and say my WBCC was back down to 66,000. reduced my hydrea dosage. but not calling does not inspire confidence. i simply wonder abotu how little he seems to care, or be involved. especially when my gp (who is awesome) is so concerned and so willing to help. it's just so incredibly different. shocking actually.
so, i'm not walking well, limply quite a lot actually, and couldn't get my shoe back on after my gp looked at it. but the incredible itching seems to be easing to some degree. trade offs.
good note: insurance has determined indeed this is not a pre-existing condition (brilliant of them) and so on wednesday when we hear for sure about the gleevec program i'll be filling the scrip one way or the other. thank goodness.
on the other hand, after being told by my gp that dr. robinson was definitely going to call today, he did not. they did call and say my WBCC was back down to 66,000. reduced my hydrea dosage. but not calling does not inspire confidence. i simply wonder abotu how little he seems to care, or be involved. especially when my gp (who is awesome) is so concerned and so willing to help. it's just so incredibly different. shocking actually.
so, i'm not walking well, limply quite a lot actually, and couldn't get my shoe back on after my gp looked at it. but the incredible itching seems to be easing to some degree. trade offs.
Sunday, October 2, 2011
the weekend
so, this weekend i'm back on hydroxurea. it is miserable. my mouth is already starting to feel it--raw, like i've eaten half a dozen or so lemonheads (remember those?) only i didn't get the joy of eating the lemonheads, and only have the sore mouth. additionally, i'm having some bone pain, which is utterly miserable. i'm on medication to prevent gout, but my right toe joint hurts, which worries me a bit. as well as my right hip hurting, way down deep inside.
i did some checking and it appears that the cancer care clinic here has two oncologists who are also hemotologists--and somehow i'm not seeing one (weird i know). so tomorrow i intend to ask to talk to the admin. because i'm pretty ticked at the way dr. robinson has behaved, and in the process ask to be reassigned to one of the hemotologists, who, i would assume, deals more with leukemia, than a random oncologist. not sure about that. we'll see how it goes. i guess i can't play the cancer card at the cancer care clinic. i'll try to remember that.
on the plus side i had a lovely couple of days. first my father's family was having a family reunion here in rapid, and i got to see lots of relatives that i seldom see, and then sharon and i went to the special opening of the park across main from the yarn shop. i went to mass this morning with my aunts and uncles, and received the sacrement of the sick. not something i'd necessarily thought about, but it was nice. the mass made me cry, i've been on the edge of tears again today, having real difficulty holding them back. i really hate that. a lot. it makes me feel weak. and crying in public is particularly bad. i cried on grant's shoulder (my dad's younger brother). it made me miss my dad. and made me realize that i need to stay in better touch with these people. my dad's brother zane looks so like dad did.
i did some checking and it appears that the cancer care clinic here has two oncologists who are also hemotologists--and somehow i'm not seeing one (weird i know). so tomorrow i intend to ask to talk to the admin. because i'm pretty ticked at the way dr. robinson has behaved, and in the process ask to be reassigned to one of the hemotologists, who, i would assume, deals more with leukemia, than a random oncologist. not sure about that. we'll see how it goes. i guess i can't play the cancer card at the cancer care clinic. i'll try to remember that.
on the plus side i had a lovely couple of days. first my father's family was having a family reunion here in rapid, and i got to see lots of relatives that i seldom see, and then sharon and i went to the special opening of the park across main from the yarn shop. i went to mass this morning with my aunts and uncles, and received the sacrement of the sick. not something i'd necessarily thought about, but it was nice. the mass made me cry, i've been on the edge of tears again today, having real difficulty holding them back. i really hate that. a lot. it makes me feel weak. and crying in public is particularly bad. i cried on grant's shoulder (my dad's younger brother). it made me miss my dad. and made me realize that i need to stay in better touch with these people. my dad's brother zane looks so like dad did.
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