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

Henry David Thoreau

Day +1 Eau de corn

Tuesday July 17, 2012
Quail Run Lot 15 and
Moffitt Cancer Center room 3715

 

I am out running this morning at 6:30.  Hot and humid.  73 degrees.  Stretches, exercise, lifting weights, shower, call David to see how he’s doing (he says fine), make food to take with me, pack up all my stuff for a day at the hospital.  Have to get some groceries and bring them back to the refrigerator before I can leave for the hospital.  I didn’t get home last night until after 9:00 and I was too tired to stop at the grocery then.  Out of bread and bananas among other things.

 

When I get to his room, here is what I find.  Dig those electric sox!

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So far things are still going pretty well.  His sleep is no better and no worse than usual. He’s still sleeping 60-90 minutes and then waking, all night long.  I chastise him to ask for sleeping medication.  A body trying to recover from this sort of assault needs multiple hours of sleep not just one hour at a time.

 

I notice that he smells like creamed corn.  We had heard this might happen as a result of the preservative they put in the stem cells to be able to freeze them.  I sniff his arm.  It’s not coming out of his pores.  It’s his breath so I guess it’s coming from his stomach or his lungs.   Very strange perfume that’s for sure.   They say it will last a few days.

 

So far, he’s still feeling good.  He had one small incident of vomiting at lunch but unlike yesterday, today he was able to recover and finish his meal.

 

His counts have started to drop a little bit.   This is the board on the wall in his room.  White blood counts, Hemoglobin and Platelets in that order are checked and listed every day so he too can see what’s happening.

 

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After the transplant, it takes 10 to 14 days for the cells to “engraft” or find their way to the bone marrow and start to function.   During that time, the white blood cell count and, therefore, the immune system go to almost zero.  This is the critical time.  With no defenses, any type of infection can be catastrophic. 

 

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His social worker Janice comes by for a visit to talk with him about any “pressing” problems.  She mentions that she heard we had a problem the night of the transplant.  HA!  Word gets around when you are irate.  So we fill her in.  She’s very apologetic.  It’s over for us now but I do hope that our experience and unhappiness with it will help someone else down the road. 

Janice discusses with David a list of alternative therapy services available to patients here.  Among the things they have are visiting musicians who come to your room and play for you.  Isn’t that terrific?  David signs up for that, a massage, a biofeedback session, a chair yoga session and a visit from the art therapist.   After he tries each of these he can request return visits from whomever he likes.

We don’t see much of his main care team today.  Thankfully, he doesn’t need anything.  He is doing fine. 

 

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Each day for both the day shift and the night shift his nurse and his “technician” come in at the beginning of their shifts to say hello, see if he needs anything and put their names on a white board posted along with the calendar on the wall at the foot of his bed.  You can tell by the angle of the picture that it’s over my head.

 

 

The nurses do the medical things like dispense medications and draw the bloods but the “techs” do nearly everything else like take the vital signs multiple times a day, change the sheets, clean up the vomit, make sure he has all the soaps and antiseptics and whatever else the room is supposed to have.

 

Here’s Vance, his nurse for today and yesterday, at the desk.

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Don taking vital signs,.

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We spend most of the day sitting on the sofa in front of the window.  He’s playing on his computer.

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We’re watching the rain fall.

 

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We take another 6 laps around the horse shoe track.

 

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This evening is like last evening.  His dinner is served.  He eats it.   I read to him.  Today we finish the last of the 892 pages of Shadow Country.  They check his vital signs.  He watches Stewart and Colbert. 

 

I can see that our days will become a routine as we wait for the other shoe to drop.

27 comments:

  1. Sounds like so far, so good. I am glad that the staff is now taking such good care of David, but I agree with you, asking for medication to help with sleep only makes sense when your body is literally at war with itself.

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  2. How wonderful that they have those additional resources for David and that he's taking advantage of them! Too bad they don't have similar things for the spouses/caregivers to help occupy time during this difficult process.
    Looks like he's liking his new laptop too :)

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  3. Ahh, Sherry...No shoes dropping, please! I ordered Shadow Country for my Kindle but have yet to begin reading it. Thinking of you and wishing you well.

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  4. All in all a pretty good day. Let's keep it that way!!

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  5. So glad things are going smoothly! Your environment seems very professional and comfortable, both of which are important for both patient and caregiver. Is Reiki an alternative therapy available there? You might find that interesting and helpful. :)

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  6. Glad to see he gets to wear 'normal' clothing during the process. I'm curious, though, if he has to be careful to not be exposed to germs, etc, why isn't his social worker not wearing a mask? Maybe I watch too many ER dramas :)

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  7. It's a waiting game, isn't it. Well I'm pulling for David to win! Glad he likes Stewart & Colbert. I watch them sometimes, usually getting tired of one or the other for a while, and then going back. I would be in a real pickle if I had to keep occupied watching tv, so I'm glad he is able to play with the computer.

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  8. what wonderful news that David had a good day....sounds like you've also done well settling into the routine...love the socks and what a nice surprise for you to find him up and dressed-I also would be chastising him to take a sleeping pill, as you stated his body needs rest...and it needs to be a restful rest and not a broken rest...as for smelling like cream corn...at least its not a bad smell :)....take care and we will be watching for good reports again tomorrow!!....still in our prayer basket ...will there come a time you will have to 'gown' up to enter the room? I'm surprised that they let you in without them....praying for another good day for you both tomorrow...one day at a time...

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  9. We're hoping the routine hangs on and that shoe doesn't drop...maybe just a little tap;o))

    Glad things are holding their own!! We love the socks!!!

    Thinking of you both everyday:o))

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  10. Creamed corn? Hmm...just add a little butter, salt and pepper! I prefer Jean Nate, myself. :)

    Does David like word games? If he does, I can send you my disc for Flip Words2. You can play on line with folks from all over the world. Let me know.

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  11. I believe the creamed corn smell is from the DSO. People who use it for other issues (rub on sore muscles, I think...) report the same issue. TurtleLady mentioned it from her time as a caregiver.

    Think about you guys daily.

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  12. Those are some wonderful services offered to ill patients..that's a great idea from Judy! You are doing a great job with the details on the blog, Sherry, it's interesting to learn about how this all works. I'm sorry it has to be you guys to tell us and inform us. David looks great in his sox! Hugs to you both....

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  13. Massage?? Oh, heck yeah!

    I wondered the same thing about passing viruses and bacteria. Will there be a magic number at which David will be bubblized?

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  14. Those are some sexy socks!

    I am also surprised no masks and gowns are worn. Who knows where the techs, nurses and social workers have been or been around.

    Glad David is feeling good so far.

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  15. Please tell me David gets to keep those awesome socks! Some serious coveting is going on here.

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  16. Eau de corn -- that's a good one. Well it could be worse. David looks good, but I do hope he gets some good restorative sleep.

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  17. So glad David is feeling pretty good. I agree with you, he should get the sleep meds. Nothing better than sleep for recovery.

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  18. I love seeing David's "smirky smile" as he stands there in "street clothes" and his attention-getting yellow socks. I agree very much with an earlier comment made that you help all of us who cannot be there daily with you and David... to understand the details of all of the treatment. Each hour is filled with various tasks and treatments and we would not know all of this without your wonderful blog. Let's hope David gets some good sleep to help his body and spirit regenerate. I had no idea the hospital would offer the "extras" you wrote about - but it makes me so happy to know that David has some pleasant choices to help him pass his time there. Can David receive mail at the hospital????? Stay strong, both of you. I hope that every day finds David feeling better and all the numbers going in the right direction.

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  19. Hi Boyds. David, you look really great for a guy in the hospital. We read the blog every day and appreciate that Sherry is including all of us in this journey. I wish you all the strength and success with this overwhelming procedure. Sherry, take good care of yourself as well as watching over David. Judy Weltman

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  20. Thanks for keeping us current on all that's happening. Give my love to David and let him know I'm thinking about him every day -- and of course you, Sherry. I know this is the most difficult thing the two of you have encountered and you're doing a terrific job of coping with your situation. It will pass and the two of you will get to move on to new and fun adventures. You certainly deserve a huge break after this.

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  21. David is looking good despite all the stuff he is going through, he's a real fighter. Just keep him away from any heat source just in case that corn smell makes him want to "pop"... ;c)

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  22. We follow your blog daily but don't comment often. Glad David is doing well to this point in the process and hope it continues. After living in the Tampa/Brandon area for nearly 40 years, have heard nothing but great things about Moffitt.

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  23. David is a very smart man. Psychologically, getting up and being dressed is uplifting and reassuring not only to you, but it reaffirms his positive attitude that will kick his cancer in the butt.

    I think a lot of people want those socks!!!

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  24. I am so impressed with how you are handling this difficult situation. I am glad that it is going well:)

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  25. thanks again, 1,000 times, for all the GREAT pics and writeups. they are priceless. i like to see what his room looks like, what his doctors look like, what the weather is like, what he's dealing with. oh, and i totally LOVE those socks. angela has on a matching pair today, actually.

    also of note, yet completely irrelevant - whenever i see your web address, i see this:

    direction 'o four dreams.

    Love,
    Amy

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  26. Does he have to wear those socks?? They're great and he looks good - hair is glossy, body holding onto that Gulf of Mexico tan. I think that is fabulous that they have extras to lift a cancer patient's spirits - massage, music, yoga - that is really lovely. Wonder how can he get a massage? I thought he had to be isolated from all germs which must mean gloves and masks in the near future, no? Creamed corn - hmm - now that I did not expect. I actually like creamed corn if it's a little sweetened, but walking around with that smell - about that I'm not so sure ;) I like seeing the people who are treating him - it does sound like overall Moffitt is a good place; I'm very glad about that - very, very glad. I, of course, hope all continues to go better than expected and the side effects remain minimal with no dropping shoes.

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  27. 892 pages in one day!?! At the rate I move through books, that would take me a year! Glad to hear the nausea seems to be under control. Here's to hoping for some awesome extra-cirriculars. I definitely would have signed up for the musician. We are back at the house for our first night with Elise Noelle AND Norah under the same roof. A ok so far! Elise has a sweet little spot in our closet.....of course displacing all of my clothes, but we figured out a home for those. She's a petite but very calm and beautiful baby girl. Loving having an infant again so far. What an amazing gift!

    Blessings,
    Justin

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