today my favorite phlebotomist was there. that means that after my blood draw today, there is no bruise. small thing to be thankful for, i suppose, but huge too. another bruise is hardly what i need. my counts are going up. my platelet count is 61. it has to be 75 before i can restart gleevec, so i get another week of "holiday". the edema and such have mostly gone away. i am wondering if i'll have all the same side effects i had when i first started gleevec all over again. hard to know.
i am not participating much in online support groups anymore. i have a hard time with the people who offer endless medical advice disguised as opinon. one guy called the list of side effects neither "complete nor authoritative". because he truly believes that having taken gleevec for 6 or so years makes HIM the authority. he regularly tells people what he thinks they should do medically. told me that i didn't need the drug holiday. yeah, contradicted mayo clinic's standard protocol. i'm not a very diplomatic person in situations like that. so i left rather than fight. it simply isn't worth the fight. but i also wasn't getting the emotional support i was looking for. too bad in my opinion, but what it is.
the shop has been getting busier and busier lately. i have started stocking what i like to think of as "the junk food of the yarn world". (some novelty yarns). they are popular, sell fast, and have very little substance. BUT, they're fun, and they taste good. so ruffling scarves abound in rapid city, and i'm ok with getting the yarn in to make more. glad they're bringing in some new customers. but because we're busy i find that i am often tired by afternooon. exhausted. even now, off the gleevec, it's almost 3pm and i'm feeling pretty wiped. and i have knit night tonight.
several years ago i started dyeing what i called "undead yarns". they were yarn colorways with rather funny/gross/gory names. like scab and mmm brains and deep bruise. ironic that now i'm dealing with so many of those very things. i think i need to revisit that idea..... more of these undead yarns to help pay to keep me alive. sounds perfect.
i've book my ticket for my trip to Raleigh NC to see my new hematologist. i'm not good at waiting so it's good i'll be busy between now and then or i couldn't stand it.
hope everyone's new year is fab. no resolutions this year.
There will always be *that* person on the online boards that knows more than your doctor, or wants to pick a fight, but there are also really great, supportive survivors too. I hope you're feeling better and can't wait to hear about your new doctor.
ReplyDeleteYou need to do what you think is best as far as dealing with others. I can't wait to get some of your Scab yarn again! It was such a cool idea! Don't forget to post them online so I can order some. I can't get to your shop to buy it. :-(
ReplyDeleteHugs & Prayers!
I truely can't wait to see the unread yarn sounds right up my alley in colors....
ReplyDeleteAnd I agree with all the above, I know how it is on such boards, which is probably why I left some of them for my sanity... Hope you come across one sometime that is suportive... Why don't the new ladies you mentioned start up a group on ravelry, I have found thier support groups sometimes better then others....
Love you and hope things go more smoothly. Horah for reiligh....
Love and huggies tons of them both...