Hey all!
Written by JKM on November 3rd, 2008Well, here we are closing in on day 28!! Can you believe four weeks have passed since the transplant? The doctors, nurses and my family all think I’m doing wonderfully which is good to hear. But to be honest, it’s also frustrating, because when they said I’d be fatigued, I had no idea what it would be like. I guess I was thinking to myself, “So I’ll be a little tired like last time with the chemo…no biggie.” but alas it is an all-consuming fatigue that I have struggled with every day since the transplant. Don’t be worried or anything, they all think it is normal and that I’m doing exceptionally well. Luckily they think I’m a “boring” patient (as my physician’s assistant said Friday when he and my nurse told me I would only be coming to the clinic a couple days a week). I’m glad to be boring and to be healthy (well, you know, relatively speaking). 
My social worker mentioned today that sitting around and napping does not go with my personality, so in that way, no matter what anyone says, I’m frustrated to be living like this.
I still try to walk almost a mile each day, although I took this weekend off. I also put on my yoga DVD today, but only as I lay down on the couch. I wanted to check it out before actually doing it myself. The lady’s voice made me verrrrry sleepy, so I might just end up doing relaxation for a half hour instead of striking various yoga poses.
I’m also frustrated that my eyes are constantly at half-mast because I feel like I look drugged. Yet, I know I have to be taking all the meds I’m on, and believe me, there are a lot!!!!! I feel like I can’t focus very well on what people are saying, that perhaps I have ADD…my social worker said it’s also common for people to feel this way. In fact, lots of people who love to read can’t do so for a period of time after the transplant because of everything going on in the body. I always love to read before bed, but I have no staying power!! Like I told her this morning, I feel like there’s a magnet in my body, one in my bed, and one in the couch, and I’m just magically drawn to those things while I’m in the apartment. I just can’t help it! So while talking with everyone about this frustration I’ve learned that 1)I should push myself, but only to a point…doing a mile a day is excellent for where I am right now, and if I can fit in some yoga, even better!! But, I also have to 2)listen to my body and rest whenever necessary. I honestly never thought fatigue could feel this bad, and I am so sorry for anyone out there who experiences this. I certainly don’t want any pain or anything bad going on in my body (I have a bone marrow biopsy tomorrow—-be thinking good thoughts!!!!), but feeling so incredibly exhausted feels almost like another illness on top of the leukemia. I will continue my walks and our searches for the cutest dogs in Seattle (it’s really a shame I can’t date here, ’cause there are lots of cute guys, lots of them have dogs, and here I am all tired, no makeup, with swollen eyes….now that’s pretty!!!!!) And you wonder why there haven’t been many closeups on the blog lately?!!! hahahahaha
Anyway, I’m in bed so of course the pillow is magnetically pulling my head downwards, but I wanted to include the following link to this video. I thought it was really touching, and I think I’m gonna pull off the same trick when I get home with the video….now I just have to find some good music…..they better be excited to see me, damnit!! Enjoy!
http://laughlines.blogs.nytimes.com/2008/10/12/the-dogs-of-warrior/?ei=5070&emc=eta1
I’m no soldier, but I was out here fighting my own fight, and I’m pretty sure I’ll get the same greeting once I head back to 7907 Oakshire. And speaking of soldiers, Happy almost Veteran’s Day (Nov. 11) to all of you heros: Tiso, Bill H., “Pop-pop” Matthews, Jeff G., Uncle Pete, Jeff B…..I know I’m missing a lot of people, but I’m gonna blame it on the chemo-brain ’cause I can’t think coherently for a long period of time!! OK, well that’s a bit of an exaggeration, but you know what I mean. To all you soldiers, thank you for everything you did and are doing for our country. I noticed something on-line the other day where you can “adopt a soldier”….sounds pretty cool! I didn’t get to read up much on it, but I think you have to write cards and send little gifts probably once or twice a week…just guessing, if it’s anything like the chemoangels group I worked with before getting hit with the big C for the second AND LAST time.
Anyway, enjoy the video, and lotsa love to everyone.
Julieara (we decided that was prettier that JuLaura).
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Yay!
You’re back! 
Good to hear from you again!
I think your social worker made a very good point when she said that laying around just isn’t in keeping with your personality. I know that the normal, energetic Julie likes to get up and get movin’. But just remember the fatigue will get better with time and you will be back to your busy-self again!
As for the link to the video you posted…you’re not going to believe it, but I cried. I think for 2 reasons:
1. Because it was just plain awesome, and touching.
Thanks for sharing that.
2. It immediately made me think of you coming home in January and how Jamey & Guinny are going to react. I definitely think we should be on the sidelines with a video camera to capture their reunion with you.
Miss you, love you, see you soon!
-The Giver
P.S. Hi Carol!
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Bed to couch, bed to couch?!?!?! Shit I think I might have Leukemia, and I don’t even do the yoga! My point being, I think that under the circumstances you are almost as active as some people are in general. I can’t wait till you are feeling back till your normal EXTRA active self!
Miss and love- Tiso
P.S. That goes for you too Momma A
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Here’s hoping that your marrow is 100% Laura today!
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ditto to andrew and laura–you’re doing a wonderful job!
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Ditto ditto! Go Juliera! Thinking great thoughts for the biopsy and looking forward to seeing that video of the reuinion. Thanks for finding the energy to post…you know we all love reading how you’re doing! Sorry bout the energy….that must be tough (especially for you)! But just think, at one point down the road when you are running around like a madwoman, you will be wishing you could just plop down on the couch and listen to yoga! I’m sure that doesn’t help now, but….just save up your energy now for when you are out there dating cute boys with cute dogs. Keep up the good work!
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Julie - you are doing AWESOME
We are all so proud of you!
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Don’t think of it as if you’re not doing anything while you’re napping. Think of how hard your/Laura’s cells are working inside of you all day long. You’re just being a good host and giving them a stable environment to do their thing! Otherwise, if you were running around all the time, they’d be jostled around and couldn’t get all of their “work” done as easily.
Yes, this is obviously coming from a non-medical person. But did you ever see that episode of the Cosby Show where Rudy was sick and Dr. Huxtable was explaining about the “trips” (germs) inside of her? It’s kind of like that….and he was a real tv doctor!
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Okay, alert the presses: I cried at that reunion video! Well, not full-on tears streaming down my cheeks, but I definitely got misty. (Julie knows I’m not exactly a dog person, so this is really saying something.)
Keep up the good healing, Julie! And try not to fight the power of the magnets
Cool analogy, by the way. You can think of all the sleeping and resting you’re doing as your body’s way of studying really hard for all its upcoming biopsy exams. You DO want to ace the test, right?! I know it’s tough for you to be so inactive compared to your usual self - just try not to be too hard on yourself, okay? You’re doing SO awesome, you boring patient, you!
XOXOX
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Hi Julie,
I have been checking out your blog from time to time and I am so happy to hear about your progress. Eric and Sage will be very happy to hear how well you are doing. I am looking forward to you coming home and checking in with me. Keep up the great work! take care and be well, Shara
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Well howdy-do! Sorry to hear about the fatigue, but I agree with everyone else- don’t be so hard on yourself. I am so proud of you, Julieara. Keep letting your body take care of itself. As I type this I am at Mayo playing around (woohoo) and all I can think about is my awesome cousin. Unforunately another thought just entered my brain; I have 3 sets of papers to grade. When you kick the big C’s butt this time, think I can talk you into moving to GA to teach???!!!!
Toodles and keep it up! Take a nap for me!!!!
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Julie ,
I can’t imagine the frustration you must feel! Missing out on those Seattle-ites and their dogs! or was it the dogs and their Seattle-ites!
Take care of you can’t wait to see you on the right coast!!
Love
Kathy