Go confidently in the direction of your dreams. Live the life you have imagined.

Henry David Thoreau

Day +18 – Marking time

Friday August 3, 2012
Quail Run RV Resort Lot #15

 

Not much to report today.  I go out running as usual.  It is hot as usual.  I slog through it as usual.  I come back and do my stretches outside, lift weights inside, shower, and have breakfast as usual.  

David’s fatigue seems to be increasing.  He is still having significant trouble sleeping with only an hour or less at one time.  Sleeping medications are not helping.  But the good news is, he doesn’t have significant back issues, the abdominal pain is less severe and he hasn’t had any nausea in 4 days now.

He is still in bed when I get back and is really lacking energy.  He eventually gets up and gets dressed and has breakfast but with no enthusiasm.  He just has no oomph at all.   He goes out for a shorter than Lettuce Lake Park walk around Quail Run.  He is tired when he returns and his feet are some what swollen.  We prop his feet up on pillows, and he lies down to listen to a book on tape.  He falls asleep for an hour less than 3 hours after he’s gotten up.

 

Day  18 002

He wakes up to eat lunch, spends a little time on his laptop and then it is time to drive into Tampa for his 2:00 appointment at Moffitt.  They take his blood and we wait 45 minutes for the results so we will know them without having to wait for a doctor to sign off which is required before they can be posted to a patient’s MyMoffitt on line portal.

It is very nice to have all of your medical records available to you on line.  But today is Friday and it is possible that these results won’t get signed into the system until Monday.  So we wait. 

DGB at BMT

 

 

While we wait, David sleeps.  He wakes up just as I am taking this picture with my phone since I have not brought the camera. 

Seeing people lying on the sofas in the BMT waiting room covered in blankets is not a terribly unusual thing.  No one bats an eye.

We get the numbers which show some positive change.  I am mostly concerned about the white cells which had made a great come back but are dropping again rather rapidly.

 

 

 

 

 

Here are the last few days of numbers.  Red indicates low.  Black indicates normal and the blue is the current concern as it edges in the wrong direction.

Day  18 008

 

We drive back and again he watches the Olympics with his computer on his lap and dozes.  We have dinner, he takes his temperature for the 2nd time today, and we go for another short walk in the sprinkling rain.

When we return, I suggest he send an email to his Myeloma Doctor about the WBC count since he didn’t see a doctor at this blood draw and isn’t scheduled to see one until Tuesday.  He thinks it is a good idea and composes and sends the email. 

He is doing more sleeping now than at almost any point since his transplant other than on his worst day in the hospital.  He says he just has no energy, is totally fatigued.   I would not be worried about this at all if his WBC weren’t moving down rather than up.   But most probably his body is just making him slow down and mark time while it gets reorganized.

Although during the walk he complains about not feeling well and is very sluggish, after this second walk he seems to have a little more energy.  At least he’s not nodding off in his chair yet.  Maybe he’s actually just discovered he’s a night owl.  Anyway, I fix him a dish of ice cream.  Good for whatever is the matter RIGHT??   As far as I know only neupogen shots will for sure raise one’s white blood cell counts.  It’s been exactly a week since he had his last one of 5 post transplant shots.  Maybe, I’d better ask the great and wise Google whether ice cream raises White Blood Counts.  Ice cream to the belly is a lot more fun than a needle shot to the belly.

Day  18

16 comments:

  1. Well, hang in there! Perhaps your body is just getting used to the "new you"? I'm having to listen to my body right now and rest more than I am accustomed to doing; frustrating but just have to stop now and then and chill out in the recliner for a while. Hoping the ice cream helps and you regain your energy! Gentle hugs . . .

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  2. Maybe he needs a caffeine drip through his IV.....It's really hard to wait to feel good but you guys have been doing an awesome job. The little up's and downs are Really annoying! Take it easy, you both deserve it!

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  3. Glad that overall he seems better, right?
    Take Care you both...

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  4. I think that ice cream theraphy is an excellent idea. Ice cream cures a wide variety of ills.

    Maybe David is a little more tired because he has come so far so quickly. His body is telling him to take it a little slower. Just keep feeding him the ice cream, but save some for yourself, too! ;c)

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  5. Ah, if ice cream could be a cure-all! It looks like it raised his spirits though :)
    Hoping this is just the lull before those white cells just multiply like crazy.
    Sleep well tonight, David.

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  6. Sorry David is feeling so drained today. Here's hoping tomorrow is better!

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  7. I'm sure his body is making him rest to aid in the recovery. The body is very good at telling us what we need to do, if we would listen to it! I saw your comment on my blog and am so happy to see you had time to look at the pictures from Black Canyon. I was thinking of you as I was taking them and hoping it would please you :-).

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  8. Yea, his body is telling him what it needs....ICE CREAM!!!! Love that smile:o)) With his counts still below normal, it is very normal for him to be fatiqued and need to sleep whenever he can. He is making amazing progress!!!

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  9. Ice cream as a cure all? Now wouldn't that be great. Hang in there; the fatigue is probably more the norm than not if he's not getting a solid night's rest. I can't help but wonder if the combination of meds is not contributing to his sleeplessness.

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  10. OK. Today is the day things need to move in an upward direction. Less fatigue!!!! A little fatigue is okay... but not this. David is a man who loves his desserts (pie).. and ice cream.. good spirit lifters. A friend brought over home-made peach pie last night... and it made me think of David. Had a "going back to college" cookout for Simon last night with some parents and his peers.... beautiful night.. even coaxed them into playing a little volleyball. I like that David is email his doc directly. I am hopeful she? can unravel the fatigue puzzle and get him up and moving a little better. You are both in our thoughts and on our minds EVERY single day.

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  11. Good that David is checking with the doctor....Ice cream and naps sounds like a good interim plan for now! :-)

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  12. Oh my - not quite out of the woods - I am disappointed to see the numbers falling and only a few out of the red. But, I imagine that is to be expected given that he only got out the hospital a week ago and the recovery wasn't expected to be over night. Glad he can feel free to sleep wherever - that is good - I'd say let him sleep whenever - his immune system is working like new - like a baby that never sleeps through the night and naps all the time. I hope today is better in terms of energy and that the doc. gets back to him with helpful comments!

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  13. Ice cream may not raise WBC counts, but it sure can put a smile on your face. Hang in there.

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  14. Hope you hear back from the dr soon as to the reason for that count going down....it's good he can listen to his body and sleep when necessary.

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  15. I'm sure there will be ups and downs until things get to some kind of normal, whatever that is. Hard to keep up your spirits, I'm sure. Glad to see a few smiles!

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  16. Sleep so important for all of us and especially in healing...hoping he can shut his eyes tonite and doze until the wees hours. Maybe some chamomile tea? Or sleeping time tea? Such determination in still getting out for his walks...and thumbs up on your morning runs too! ICE CREAM - yum! My husband put some on a yeast glazed donut...he thinks he has the new "fair food!"

    Wondered if you try smoothies. I used some protein powder, a bunch of kale and/or spinach, plain Greek yogurt, almond milk, and some grain mix I mix in large containers,(walnuts, pumpkin and sunflower seeds, barley cereal, wheat germ, flax, etc)and then depending on the mood...canned pumpkin, nut butters, assortments of frozen berries, bananas, avocado, fresh oranges, and the list goes on with whatever is in the fridge. I just use a blender - love to have one of those vitamixer (sp). We are liked hooked and the best park it will hold us to lunch O:) ~cozygirl

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