i'm normal

ok--
not really, but my white blood cell count today is NORMAL!  my dr. called to tell me my WBC was 9000--just inside the normal range. so exciting. i'm hopeful that this speaks well of things to come.

the side effects of gleevec continue--my digestion is still very questionable, and i have developed a pretty good case of adema.  in particular my face and hands are quite swollen each morning. altho most afternoons it seems to be better. unfortunately, this is apparently because gravity acts and my feet and legs are swollen by evening. i've been told i really can't take a diuetic because it will lower my blood pressure, which already is quite low. (yesterday my blood pressure was 108 over 58) and since diuretics often lower your blood pressure as much as 20 points, i can't take any. oh well.

in other news, i have had the most bizarre run-in with the cancer care clinic here about my medical records. Yesterday i went to request a copy of medical records from the cancer care clinic for my own personal use. i wanted to look up some things, but in order to really know much i need to know the specifics in my medical records. when i arrived they explained to me that there was a charge for the copy.
                  Me: you're going to charge me for a copy of my medical records?
                  Receptionist: yes
                  Me: but i already paid for the care, why on earth would i have to pay?
                  Receptionist: that's what the hospital makes us do.
                  Me: how much is the charge?
                  Receptionist: let me get my supervisor, she can tell you more.
                  Me to supervisor now: how much do you charge for a copy of medical records?
                  Supervisor: well, if it's for a dr's office, we provide it for free, but for personal use, it's $20 for the first 10 page {in my head: holy fuck-$2.00 a page?) plus 25 cents for each additional page.
                  Me: You must be kidding. i'm happy to pay the actual copy costs, but $2.00 a page?
                  Supervisor: well, i'll talk to my supervisor and have her call you tomorrow.

so today, i got a call, and the supervisor's supervisor explains to me that the cost is to "offset administrative costs." I explained that i had looked up the law, and they are allowed to charge a "reasonable copy cost" (ie: a quarter a page) by state law. then she explains that if i pick up a copy to take it to a physician (even though they won't follow me to the physician's office so they have no idea if i will be providing it to a physician.

                 Me: so you're telling me that if i lie and say it's for a physician you won't charge me, but if i tell you the truth and say it's for me, you will charge me?
                Her: yes, i suppose if you want to say it that way.

so, i end up saying, truthfully, that i need to take a copy to my GP when i go next and that i will simply copy myself some from a copy for her. but i am irritated that i am being told to lie to get around a ridiculous rule. oh well.... welcome to the world of medical records... what silliness.

i don't want to do this

i know it's stupid to say that, it's not like i get a choice. but this damned stupid nightmare of me having leukemia, i want to wake up. i don't want to keep being strong. i am tired of waking up every morning to same horror that i went to sleep with. im tired of getting up and pretending for everyone that i am ok. i'm sick of feeling like crap. i'm tired of the fact that i feel far worse to today than i did 3 months ago, with untreated CML. i don't want this to be normal. i want the old me back. the me that got to not worry about medication and didn't worry about whether i was running a temperature every time i feel a little ill. i want to wake up tomorrow feeling good. i don't want the swollen eyes and the fluid retention and the nausea and the diarrhea and all of it. i want to get to be me without cancer for one more day.

the realization that this is forever. that i have to live with this always, and that there is no real remission and that even with the remission i might have, i'll still have to take medication forever. and that i will always have to worry about medication stopping working. and that i will pay the maximum legally allowed for insurance forever...

all that is turning my life into something i never ever wanted. i never wanted to be sick. i remember having this conversation with Jeremy awhile back about not wanting extrordinary measures taken to keep me alive. that i didn't want to be sick. and now i am. and i can do nothing but live with it.

there is a tiny part of me that wishes this were normal cancer. where i could have surgery and chemo and radiation and then in 5 years maybe i'd be considered "cancer-free". only i never get to be that. ever. life is incredibly unfair. today... i'd like the world to stop, i want to get off.

Honeycombs!

so, for those who are unaware, which mostly would be me, i guess--marti/leah convinced a bunch of people to make me honeycombs for my birthday. she/they did this because when i realized how much time i would likely be spending in doctor's offices over the next year or so, i decided that i was going to make a beekeeper's quilt. (picture below)

i got excited and have made about 8 so far, planning on making them over the course of the next year or so, while waiting in dr's offices and such. after all i have spent a good deal of time already, and felt the need to do something with my hands, etc. 

so today at knit night, a bunch of people showed up with little packages of honeycombs, and apparently more are being sent from elsewhere. i'm not sure people know how much this means to me. i had originally intended it to be a display to put at the shop in the cradle, but now, now i think i need this to be on my bed or rocker at home, where i can wrap up in it regularly, knowing that people who love me, some that i've never met (marti's mom is apparently making a few even) took the time and effort to make these for me....  i've been feeling terribly alone in this cancer thing lately. thanks all, for letting me know that i am not alone, and that indeed, i can be wrapped up in love of people from all around.... it gives me hope and joy to know that people have gone out of their way to do this. love you all....

birthdays and such

today is my birthday, and i'm celebrating most especially because i get to have this birthday. and have every reason to believe i'll have another one next year, and the following and the one after that.... i am not planning on how to deal with dying like i would have 15 years ago. i haven't been told to go home and put my issues in order because i have 3-5 years to live if i'm lucky.

this, this is why cancer research is incredibly important. please consider a donation to the National CML Society, or the Leukemia and Lymphoma Society or the American Cancer Society.... they really are the official sponsor of birthdays! all of us with cancer have all these groups (and more) to thank for the progress made, and for every single birthday we get to celebrate!

TMI

so, this is going to be one of those TMI kind of posts that you may not really want to read. it's about bodily fluids and such, so be warned and don't read further if you'll be upset.

for years, since my c-section with amanda (19 years ago now) i've had digestive issues, on and off. i've quit eating at perkins because i often make several trips to the bathroom in quick response, with terrible diarrea. i've learned over the years what i can tolerate and what i can't, and for the most part i've learned to live with it. it's never been fun, but it's been livable.

for the last 3 days i've been living through a trip to perkins every morning. it seems to be settled down by afternoon mostly, but mornings, especially the first few hours are spent mostly in the bathroom. additionally, i feel nauseated almost constantly. more so if i allow my stomach to get empty. also, i have an odd rash over most of my trunk (abdomin, back and thighs in particular). it is little red bumps, they tend to be a bit itchy but not much else. all of these responses are apparently typical responses to Gleevec. on monday we'll see if i'm having the other more positive typical responses to Gleevec.

saturday

today, i am feeling definitely better. thank goodness. my stomach is still pretty questionable, and i'm having some intestinal issues. (ugh) but i'm feeling otherwise decent.

hung out for the day with friends at the yarn shop. it was lovely. i'm amazed at how much faster the day goes when i have people to chat with and such.

so, quiet day... i'm off for a nap!

randomness

this morning i woke up feeling ok, but suddenly about 1/2 an hour after i woke up i felt a sudden "sick" feeling. reminds me a super duper dose of morning sickness. my guts just hurt. quite badly. and i feel naseated. additionally i'm feeling chilled and cruddy, just generally UGH.

additionally, just to answer some questions: i really can't take medications that are over the counter, for those who have suggested various options. unfortunately gleevec interacts with almost everything, right down to and including tylenol. the best i can do right now is try to eat as healthily as i can, drink tons of water so my liver is not overtaxes by processing the gleevec and and hope for the best. all the various supplements that are normally seen as harmless may interact to the gleevec making it less effective or too effective. so all those type things (some that you'd never guess, like garlic pills) are just not an option for me.

for those who wanted to see the hat and coat, here's a pic!  marti took it last evening at KN. 

missed opportunities

this disease is bringing up memories of time past. when i was 20 my father was really ill. he was dying. he knew it, i think my mom knew it, i didn't want to know it. i remember going home for a visit in August before i went to a job in Boston as a nanny. it was a lousy job, but i wanted to prove that i was independent and could do it on my own, and that i needed no help from my parents. anyway, i remember distinctly saying that i wouldn't be home for a year, or something like that. and my Dad saying "promise that you'll come home and sing at my funeral". i promised, but i blew it off. i didn't want it to be so. i had spent that summer with my friends in Bismarck, working at McDonald's and wasting time and money. being 20.

i went home for that one weekend before i went to Boston, and i ignored everything that was going on i guess. anyway, that August i moved to Boston. it was silly, and the job was lousy and i lost it almost immediately. at 20 i wasn't prepared to deal with kids. i stayed in boston for a month trying to find a job. what silliness. in the end about a week before my 21st birthday i came home. my dad had gone downhill a lot in those 2 months. the difference was scary. my dad wanted me to stay. i was smart enough to choose to do that. i took a part time job at Penneys and spent lots of time at home with my dad.

the next month holds memories that i could never replace. that i would never give up, that i am amazingly glad i did not miss out on. cinnamon toast, and the smell of it will always remind me of dad. it was one of the few things that he wanted to eat. i tried to remember things all day on the days i worked to tell him about what had happened.

on thanksgiving he went into the hospital, on paper, to have tests. he was having trouble swallowing and was losing more weight. honestly i think my mom didn't want to wake up one morning to find him dead. anyway, he went into the hospital. unfortunately i remember i had a stupid argument with him that day about an ad that promised to make chairs to fit anyone's comfort. (my dad was in a wheelchair, having had polio as a baby, and was quite abnormally built--no chair would have fit him). anyway, he went into the hospital, and the next day he was to have tests.

unfortunately, either in swallowing the barium (having now had to drink barium i can understand how this could have happened) or something else, he stopped breathing. they resusated him, but he came out of the test on a ventilator. i got this call at work to come to the hospital right away. i walked the 6 blocks from penneys to the hospital. that was the friday after thanksgiving. my mom started calling siblings. by Sunday morning it was quite obvious that this wasn't going to end well.

the doctor came in and told us that he was unable to breath without the vent. and that the best case senario was living in a iron lung or on a ventilator forever. and that likely he was going to go more downhill instead.

my father was an amazing, emotionally strong man. but the last thing he would have wanted was to be more helpless than he had been his whole life. things started going downhill and midafternoon he died.

i have regretted, forever really, that i didn't spend those months of august and sept and half of oct. with him.

i talked to my older son last evening. i told him about how this was a major regret in my life. and i tried, without being too harsh, to point out, that even with all the best medicines and highest hopes, that about 10% of the people with CML die within 5 years of diagnosis. he's been spending hours everyday playing games on the computer and has spent almost no time with me. i totally understand the escapism of "not real" worlds, and pretending that your mom isn't really as sick as she is. but i told him that if everything went well, and he spend the next year spending more time with me, it wouldn't be like he'd look back and regret the time missed on computer games, but that it everything went badly, in 3 or 5 years if i was dying, he would regret not spending the time with me.

i told him that wished everyday for years that i could get back those 3 months to spend them with my father. to get to know him as an adult instead of just as a child. it was so hard to say those words to a 17-year-old. i didn't want to have to say them. i didn't want them to be true. but i don't want him to live with the regret that i do.

and in the end, my situation only makes the risk more clear. take the time today and tomorrow and everyday to tell your parents and children and loved ones that you love them. spend real time with them. talk to them. sit with them. hold onto them. tomorrow may not come.

lousy day

I'm learning something important in all of this. somedays, when i used to have a sort of cruddy day, i now have a downright rotten day, because i don't feel good. physically i never feel good anymore. or almost never. i feel emotionally shitty, and physically shitty and somedays i just want to go to bed and never have to get up again. i can't, and i won't, but that's how i feel.

today: one of those days. i have hay fever, i've always had hay fever and of course having leukemia won't change that. so today, i'm sneezing and feeling generally lousy. and i have all the usual exhaustion and such of having leukemia. and on monday, when they drew blood, it was someone new and she did a lousy job and left a dark purple bruise the size of a quarter or so. it's still physically tender. ugh.

nothing is terribly wrong, don't misunderstand. i just had lousy dreams, so i didn't sleep well, and i'm feeling generally lousy about my life, and just now, it all feels so monumentally unfair. i know that no one deserves to be sick. i get that. but some people make choices that they are aware may make them sick. like people that smoke, or drink a lot, or are promiscuous or whatever. it seems like at least they are or should be aware that the choices they are making may make them ill.

i on the other hand, was always the good girl. i've been drunk about 3 times in 43 years, and even those were not drunk, like falling down drunk, they were a little past the happy giggly stage. i've never smoked a single cigarette, or anything else. i've never done drugs, i've never slept around, i've done all the "right" things, always trying to be good. and now i'm sick. really really really sick. i have a disease that without treatment would kill me. and might even with treatment. because in spite of all the advances it kills people. and even with treatment may make my life pretty hard to live in. the treatment may make me pretty sick. what did i do wrong? why do i have to be sick?

and so, here i am.... feeling cruddy and sick and just wanting to sleep forever....it's a truly lousy day.

mouth sores and mouth wash

so, the hydrea that i am taking causes mouth sores. in my case it has made the end of my tongue and about 1/3 of hte way back feel really raw and sore. today during my appointment with dr. robinson (where he was much better and acted much more interested and helpful) i asked him if there was anything to do. he gave me a scrip for some special mouth wash that the pharmacy there at the cancer clinic has put together.

i came home, brushed my teeth (i've been doing that about 5 times a day or so to keep it as clean as possible and then drinking water because i get very dry) and tried it. HO.LY.GOD. it burned. and it made my tongue and lips and inside of my mouth numb. and burning all at once. after a while it did seem to mellow a bit and things felt a bit better. but wow.... it's bad when the meds they give you to help relieve a symptom are worse than the symptom.

i'm trying out the water pitcher and it is perfect. i made strawberry-lemon water. it is lovely and refreshing and doesn't make me feel quite so "flooded" as just plain water does. i may need two, one for at home and one for at work :-) yes, it's that good. even brenden and amanda like it. so if you're trying to lose weight, or just be more healthy, consider it!

shopping

i suggested we go shopping today. i just needed to get out of the house. so we went to "someone's in the kitchen", a very nice kitchen store and bought a fruit infusion pitcher. the basic idea is that it has an insert that you put fruit it, and then pour water over it and have flavored water to drink. i decided that if i was supposed to drink huge quantities of water every day, and when i toss in the way my taste buds and taste is changing, that this might be the answer.

i'm hoping that the alteration in taste is the hydrea (which i'm hoping i'll be off tomorrow) and not the leukemia, but i'm not sure. everything tastes too much. salty things are too salty, sweet things are too sweet, tea is too tea-y, everything. so this pitcher i'm hoping will not over flavor the water, but will make up for the fact that nothing really appeals except water (and occassional herb tea) but water makes me feel a bit floaty when i drink too much.

we also went and bought a new coat for me. my old coat in size 1X does not fit my new size 8-10 body. at all. so i found a lovely black, slightly longer coat. it fits nicely and does a bit to disguise my spleen enlarged belly. if it was the size of a basketball a month ago, unfortunately it's still about the size of a slightly deflated basketball. but most of the abdominal pain is gone. it's funny. i never had any real abdominal pain BEFORE the diagnosis. just that occassional stitch in my side. but somehow after the initial hydrea treatment, during the two weeks off, i had quite a lot of abdominal pain, especially in the evenings.  anyway. after the coat, i also bought a hat. not a ski cap, but a wool felt hat. it's stylish and cute and rather 1940s or something. i love it. even with the new hair. maybe even more with the new hair. the hat is maroon and looks cute with the coat. and jeremy thinks it's great.

so, things are fine. i have an appt. with dr. robinson tomorrow. hopefully we can build some understanding of what i expect and what he can offer. and hopefully i can start the gleevec tuesday when it arrives. at least then i'll feel like i'm doing something.

took a nap after the shopping trip. amazing how little energy i have. how little i can walk before i'm really tired out. hopefully that will change with the gleevec as well.

i want to start exercising. maybe soon. when i have more energy.

wish i hadn't missed crown. :)

pics from the haircut

it doesn't look like me to me. i know it looks fine. but i am still getting used to this much smaller me--75 pounds makes a huge difference. and then a foot and half of hair.

on the plus side the actual haircut was painless. the lady that cut my hair (amanda) is lovely. she had lymphoma when she was 19. had to have the chemo where you lose all your hair. i have NOTHING to complain about. and honestly, it looks nice, i just am sad that i felt like i HAD to for it to look nice.

i'm getting a haircut

so today, after lots of debate i'm going to get my hair cut. i have super long hair for those who don't know. i can sit on it. i haven't cut it in 10 years about. my last haircut was when i was pregnant with my son who is now 9.5 years old.

but i've been losing more and more hair over hte last year and the ends are starting to look very thin and scruffy. :( it was hard making this decision, but i'm afraid i'll lose even more before this illness is over. the meds i'm on do eventually cause hair loss. so i'm going to save the hair they cut off in case. the meds i'm on i'm going off of momentarily, so i may not lose more but who knows?

it's upsetting, not to get it cut, but to feel like i HAVE to get it cut. oh well.

what can you do?

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

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.

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.

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.

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.

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.

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.