![]() |
OOO, look at all that hair! And my freaky arm, doesn't it look like someone else is in the picture?!? |
Moving is awesomely all consuming. It requires both mental and physical attentiveness that leads to the kind of total exhaustion which good escapists like me relish. There was no time to think, there was only pack, pack, pack, move, unpack, unpack, unpack.
But while I was actually, physically moving from one (much larger) space to a smaller one... I was also moving from a very aggressive course of treatment targeted at completely destroying my cancer, over to one which is much more permanent.
![]() |
My magic moisturizing socks... |
The good news is, so far I am fine.
The only thing they recommend to head off this nasty effect is moisturizing your hands and feet a lot. I have taken down a jar of udder cream like it was a popsicle about to melt. HBF doesn't seem to mind the constant greasiness (or that he is now the chief dish washer in our family because drying out your hands and heat can exacerbate the condition.)
But of course, the doctors need to figure out the right dose. They want to get it as high as possible (so it can be effective as possible) without my body rejecting it. And, of course, they didn't get it right the first time. And when they get it wrong the body literally rejects it (along with everything else you put in your body.) Which of course, is a side effect I do have.
![]() |
At the hospital getting hydration, under the smothering care of Nurse Fenway. Dude, stop hovering! |
And while my hair is growing back (currently, it appears to be getting thicker, instead of longer, but I'll take it) I fear that the other things might be forever out of my reach. It's a hard thing to wrap your mind around.
Back when I could do ridiculous workouts, I would tell myself "Dena, you can do anything for 60 seconds." And then I would just will myself past whatever painful thing (lunges, planks, etc) that I was doing to my body. This has always worked well for me as a strategy. But "Dena, you can do anything for 10 years." just doesn't have the same ring to it.
I know everyone has their limitations, their "dietary restrictions" their "crosses to bear" and so today, I am asking all of you for help. How do you do it? How do you keep yourselves feeling good and focused on all the good things you have, instead of on all the things you might be missing out on?
I need some inspiration so I can purge all these negative thoughts from my head and start the business of living my life again. Please help me cure my FOMO.
This is the best I have come up with so far:
Thank you for your help!
xoxo
Dena
4 comments:
I think about you. No bs. xx
Dena! Long-time reader, first time commenter. We share a friend (the lovely Jenais)! I'm just 5 months out of treatment but am going through the same exact mental challenges. We seem very similar - I've never been able to accept being told I can't do something. But now, my mind and body are completely out of sync.
I'm learning to accept that a "good day" is if I got 8 hours of sleep (HA!), took my vitamins, and ate 6 small meals. Getting a walk or yoga in is like winning the lottery. :) I don't know about you, but for me it's all about quieting the inner judge that has been with me since I was little. She's usually the one telling me how much I'm missing out on and not keeping up with everyone else. So, you know, I just tell her to STFU and then I go buy flowers or something for our new house that I can enjoy today. :)
This probably doesn't help AT ALL but I did want to finally say hi and that I've enjoyed following your journey very much. You're quite the inspiration!
Hi Dena,
Sometimes I think about all the fun stuff out there that I can't do because of Fibromyalgia, or what it would be like if I wasn't in pain/fatigued ALL the time. I know that FMS is VASTLY different from cancer, but hopefully one of these might help you out.
When it gets bad, I distract myself by being around people - at work, with a friend, with my family. Sometimes I tell my husband to tell me something about his day, just so he's talking and I can focus on his voice instead of feeling crummy.
Sometimes, getting out of the house for a walk, no matter if it is to the end of the block and back, helps a lot. Just moving and breathing fresh air.
Sometimes, forcing a smile on my face will even help.
A book doesn't usually work for me, as my mind will just wander anyways.
On the days when it's not too bad, and it's just a normal day for me, I just live my life. I decided a while ago that I would try to be as happy as I could and just live with FMS.
Dena - you have been so strong. Keep at it, and hopefully the doctors will get your dose right soon. Enjoy your new place.
love,
Cecily
Hi Dena,
I have had some bouts with hand and foot syndrome as a side effect of Xeloda, which i've been taking since September. I didn't get as bad as having blackened hands and feet, but in the fall I did go through a period of lots of blisters on the bottoms of my feet. After that my doctor reduced my dosage and it has been almost gone since then. I have found that wearing cushy sneakers and not doing too much walking has helped a ton. I can feel the 'sunburny' sensation when i start to do too much walking then just try to ease up. It's not a pleasant side effect, but it is not nearly bad enough to have nightmares! The worst part of it is that I haven't been wearing high heels for months, and my shoes miss me!
I have found during my treatment that setting up small 'celebrations' has helped me to keep positive. For me, when i finish a round of treatment my boyfriend and I either cook or go out for a delicious brunch. (Frequent brunching was one of my favorite past times pre cancer) And the night before i go in for another treatment I plan a dinner with my girlfriends. It helps break up the cycles and gives me something to look forward to. It sounds like you are blessed with supportive and loving people which in itself is inspiring! You rock. Keep it up.
xoxo,
chelsea
Post a Comment