It's 2:30 am and I'm having one of those Gleevec nights where there's far too much action in the alimentary canal to get back to sleep, so here's a question for you all. What little things do you look at differently now than before you started your CML journey? For instance, I was making a shepherd's pie the other day and scooping the marrow out of the lamb bone felt REALLY weird!
Seeing things in a different light
Posted 28 November 2011 - 09:46 PM
Haha -ew! Marrow has always weirded me out - but I guess I know a lot more about what it really is now, and how it works!
In my office we used to joke about who we would ask to finish our PhD theses if something was to happen to one of us...I don't make those jokes so much anymore They weren't really funny anyway.
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
Posted 28 November 2011 - 09:48 PM
I love spring/summer, hate the fall/winter months, but this year, because I took the time to examine the fall, the colors are nice. they will never be favorites of mine, but they are colorful and bright, winter I am still seriously iffy on, pretty white is ok, but in a day it looks dirty and used because of traffic, ATV's, and random cars. .
Dinner with my family, when everyone is content. I used to be cleaning up while they were eating, i always had somewhere to go and something to do, I never sat with them, I at as I cleaned. now we sit down.
The ability to shoved over 5 ton of 1B limestone, carry it to the needed places, and then smooth out the leftover area. I used to do this without thinking, Today, I did it with a sense of accomplishment and drive. I did it, I actually did it!
Posted 28 November 2011 - 10:19 PM
You do have a way with words, I will never look at a bone again. This house is now boneless forever. It's wierd you made Shepherds Pie. I was just looking up recipes for it today.But I'm going to use Hamburg. My condolences on a Gleevac Night. I remember them oh so well. Those were times I really wished I had a laptop, and stock in a toilet paper company. We have to get Pam on the right track Lord knows what she'll grow now. Billie
Posted 29 November 2011 - 06:09 AM
And I thought I had gastric issues! You need to be careful Pam as taking too much calcium carbonate can inhibit your stomach's ability to absorb your TKi. I'm no doctor, but I think 5 tons is probably an excessive dose.
Posted 29 November 2011 - 06:17 AM
Something else that has really changed is the experience of watching House. I was really surprised to find how much I was now empathising with the patients rather than, as I used to, seeing them through House's eyes as bits of the puzzle. Even more surprising was the extent to which I now generally understand all the medical language and can often have a good guess at what's wrong with them!
Anyone know if Trey walks with a stick?
Posted 29 November 2011 - 08:15 AM
And here I thought it was good for the digestive system.......ok Billie, I am still a pain in the ass. hehe
Posted 29 November 2011 - 11:49 AM
For me, I give the gas nozzle the hairy eyeball every time I need to put gas in my bar. Gas has benezene ya know, which can lead to leukemia. :-) You should have seen me the first time I filled my gas tank after diagnosis--I put the nozzle in my car and then ran to the far side of my car before I realized what I was doing! It really freaked me out!
Posted 29 November 2011 - 12:00 PM
For me, I give the gas nozzle the hairy eyeball every time I need to put gas in my bar.
Posted 29 November 2011 - 12:02 PM
Oy, I meant to type car...and the hairy eyeball is the suspicious glance...way too early in the am...I need more coffee.
Posted 29 November 2011 - 12:47 PM
I could work out the gas nozzle / petrol pump and hazard a guess at the hairy eyeball, but the bar had me utterly confused!
Posted 29 November 2011 - 02:58 PM
Geez, you guys, every darn time I swear I am going to have a poor me day, you all go and make me laugh!
Posted 29 November 2011 - 03:28 PM
The head tilt. You know what I'm talking about? When someone says "How are you?" and their head tilts to the side. Now that I'm on the receiving end, it really annoys me. I've decided I'm not going to be like that with other people. I will not do the head tilt!
Posted 29 November 2011 - 03:32 PM
Rissa - that was funny
I can totally picture that in my head - the tilt, with the slight eye squint and slightly open mouth saying "ohhh"
Posted 29 November 2011 - 05:33 PM
Oh I can relate to how one watches House - although I stopped after series 5 as I thought it was losing its way. Still wonder how much we get sneered at with our collective side effects.
As for marrow - watching daughter fishing teh marrow out of a slow cooked lamb bone the other week was a little creepy.
I have also found I have little patience for people who fuss about having a blood test that involves one or two meagre vials of blood.
I also now take strange pleasure when someone I haven't seen for a while does the fake concern "How are you" and look really disappointed when you say "Yeah I'm great, getting to the gym regularly doing really well feeling fantastic". (even if I am fibbing
Posted 29 November 2011 - 06:08 PM
Rissa, that bit about the head tilt is so perfectly observed that I have the nasty feeling I'm going to just turn into a giggling wreck the next time I meet one of our best friends - who does EXACTLY that EVERY TIME we see her.
Posted 29 November 2011 - 06:40 PM
1. Being humored.
It seems no matter how often I tell people about new drugs and this is not going to kill me, they don't really believe me. Yes, I know I have had a bigger roller coaster ride than most and that last med almost did me in. BUT, I am getting better. It is just taking a little longer than some. They ask me how I am , I tell them about the new meds and how good I am but I can hear it in their answers when I tell them I may outlive most people I know. They just humor me. They think, I have cancer and taking pills cannot keep me alive. Most people still think with cancer, you get cured or you start getting your affairs in order.
2. the magic pill attitude.
Then there are the people with medical knowlege who think, "what is your problem, why aren't you doing better? you have the magic pill"
3. any positive crapola
the answer to everything is stay positive, you will do fine you have positve attitude. etc. I want to say, "I am positve you don't know what you are talking about".
4. all that to say;
I take anything anyone who has never dealth with chronic illness say with grain of salt. Most people have no clue.
And even though this post sounds very witchy, I find most things people get upset about strikes me as funny.
I used to be just like them. Now 90% or more of things that used to upset me, don't even ruffle a feather.
Posted 29 November 2011 - 06:59 PM
In the past 24 hours I'm learning to view the bathroom in a new improved light. I just got my first fluid pills and have lost 1.5kg (3lb) of fluid in the first day, there is hope for my eye lids yet!
Dx Dec 2010 @37
2x IVF egg collection
Glivec 600 & 800mg
PCRU March 2012
Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon
Nilotinib 600mg Oct 2012
PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips
April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy
Healthy baby girl Jan 2016, breastfed one month
Nilotinib 600mg Feb 2016
MMR May 2016
PCRU Feb 2017
Posted 29 November 2011 - 10:06 PM
I get nervous at the thought of putting on my wetsuit to go kayaking. Never had a problem with it before. . .but now. . . .it's difficult to get out of a wet suit fast, when the Gleevec urge hits. Luckily. . .Sprycel doesn't seem to have the same effect. Whew! Guess I can kayak next summer without worrying. . .
Sorry. . .a bit more gross than you were looking for, Phil?? Though I do remember an earlier conversation about a shark attack. . .or was that a shart attack. . . and the problem with wetsuits. . .
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