Since my goal is to reach a complete molecular response, I must do my part, to the best of my ability. My “job” is to take a little white pill every day; at the same time. Since there is information out there that suggests that missing as few as three doses a month, may prevent you reaching your goal, I know how important that it is. It sounds simple doesn't it?
I mean come on, how hard can it be? When I first started taking Sprycel, I simply got up every morning, brushed my teeth, avoided brushing my falling out hair and went to the kitchen and took my pill; precisely at 8:00 am. Eventually I started to wander into the office and then say “Dang, I forgot my pill!” Soon my daily dose was 8:15 am. Somehow I have managed to work myself all of the way up to 10:30 am; but in my defense, I have remained steady there, for the past two months.
I figured out how to set an alarm on my cell phone, got smart enough to put a few pills into my pill holder in my purse, have a few more stashed in my make-up case and one even in the glove box; that way, no matter where I am, I am armed and ready. At $285 a pill, I have a fortune stashed everywhere you could imagine!
Here is my new issue; the alarm goes off, I stop whatever I am doing and head to the kitchen where the Sprycel bottle prominently sits on the counter. Most days I simply pick up the bottle, open it, take out a pill and swallow. Over the lips and across the gums; no problem, right? Wrong! Here is the new dilemma; I am in the kitchen, with the Sprycel bottle, either in my hand or still on the counter; I stare at it and it stares back; and I fervently try and remember whether I actually already took the pill; or not. Talk about frustrating! I blame it on my chemo brain; but really, to not be able to remember whether or not you took a pill has got to be on the top ten list of frustration.
Idea number three; I shall haul myself out of the house today to purchase one of those little pill boxes with the days of the week on it; hopefully that will solve the day old mystery of “Did I, or didn’t I?” If it is still in the box, then I didn’t, if it is gone, I did. Of course, that is only going to work if I remember to take my daily dose with me if I leave the house, and if remember to fill it on the same day every week. I must not rely on my secret stash for my daily dose; it is only there for emergencies.
I can do this, I know that I can!
Josh has the same issues!! We do have a pill box with the AM & PM boxes for each day. And he has his cell phone set to the alarm. Our problem are days where we eat late and then he has to take his pills a half hour later. So the alarm goes off, he turns it off, and then has to remember to take them in 30 minutes. Which can be hard to do! Go get a pill box for yourself!!! :)ReplyDelete
It "may" be Chemo brain Michele, sounds more like a "stressed" person- with or without Chemo to me, I think the little, weekly pill box is a great idea for - anyone. Taking morning medication IS confusing, especially "did I take this already"? Then count to see (I am talking Synthroid) but I forget, obviously as much as I remember, so - doing a count doesn't help, at all. Since yours medication is a daily "must" those funky little pill boxes that I equate with "old people that can't remember didley squat" well, I'll admit I've been thinking making those aren't such a "dorky"thing anymore! (Geez, THAT must be an age thing too)... It's all ok, buy the box, it just makes you "human", and eventually that little box will get RID of your leukemia! Definitely a worth while investment! You can dance your way to the drug store to pick on up! All the best luck in Portland1 Love you always my Belle, Julia xoxoxoReplyDelete
Thanks Julia, Funny that you should talk about the boxes and "old" people! HaHaHa...I always thought that, too, I just forgot!lol I am now one of those "old" people! lol And yes counting pills certainly doesn't work either cause I can't remember how many were in the bottle and then there was the fact that I didn't take any for ten days and one day I took one from my purse, so yeah, counting is definitely out!ReplyDelete
And Laura, I guess I am lucky because Sprycel is only once a day with or without food....no restrictions! Score!
I have leukemia, too, but AML. I happened upon your blog quite by chance. Although not CML, I can relate to a lot of what you write about, most recently the taking of a super-important drug. I have been taking sorafenib (Nexavar) twice a day for nine months, and, as a result, I am in remission. Having been given little chance of surviving a year ago, I now feel great! So I make sure that I take my sorafenib. And it's difficult, because, for good absorption, it must be taken on an empty stomach -- nothing to eat two hours before or one hour after taking the sorafenib. So I need two 3-hour windows every day. Yee, Gads!
I have used a pill box (actually 7 x 4 compartments) every day since I got home from the hospital. It works! I've messed up only three doses in nine months. I fill it once a week, of course, and put in the other drugs and supplements that I have to take, as well.
I love your positive attitude! That is a large part of what enabled me to pull through a year ago.
I am on www.CaringBridge.org/visit/rogerodell
Just curious; just how was "quite by chance?"
Glad you found me and shared your story. I have a friend who was just dx with AML, as well....lol I'm a poet! Anyway, I am not sure that he is taking Sorafenib, I will have to ask him.
I am fortunate that Sprycel doesn't have and special instructions, other than no antacids within a few hours.
Keep up the good fight, Leukemia is leukemia, right?
Hi Michele! I can across your blog while searching for "chemo brain" on the Google. I have the EXACT same problem with my Sprycel too! Did I or didn't I? I think a few days (and probably in a row too) I double dosed myself thinking I had forgotten my pill before leaving for work and took ANOTHER one when arriving home. I tried the pill box but I forget where I put it, I tried writing it down but I forgot to look at the calendar, I wrote myself notes but wound up throwing them out thinking there were nothing important. It's frustrating and I feel like a child sometimes. It's gotten to the point where I tell my household "I'm taking my pill now! Don't forget so I don't accidentally take another pill later today!" I'm 28 and feel like an Alzheimer's patient sometimes rather than a leukemia patient...oh and thanks for the blog. I have something to read for the next few hours while I wait for the insomnia produced by the chemo to reach critical mass and I just pass out. You can check out my stupid blog on CML and everything else since I can't keep track of things mentally at csadlowski.weebly.com. : )ReplyDelete
So glad that you stopped by; not so glad that you have leukemia! lol The brain fog is like the MOST annoying thing! I hate when I cannot think of a word, or words and when I cannot remember things. You don't know how many times I preface things with "I know that I have probably asked this questions before....BUT, I don't remember the answer!"
I am certain that I drive people crazy.
Now, on the pill front; I know how imperative that it is to take my medication regularly and consistently. The pill box has helped me tremendously as does the alarm on my phone.
Please try this; it has worked for the chemo brain, leukemia patient!
Best to you,
Ow Michele, I had such fun reading your post 😂 This is totally me!! My husband was so surprised I could not just take that one little pill “If it is that important to you, why can’t you just remember?” Well, I started with the alarm on my phone and a medicine app as well, would walk to the kitchen to take my pill and totally forgot what I was about to do and would find myself cleaning up the sink or dishes or whatever. If I did remember to go to my medicine cabinet I would turn off both the alarm and app, than look back at the Sprycel box not knowing if I had taken my pill or not...ReplyDelete
So I also bought a pill box with the days of the week. And guess what, just like you I have to pay attention if I take some out of my secret stash 💊
Well, thankfully I just reached MMR after 6 months and we can laugh about this. Thank you for sharing!