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

Henry David Thoreau

Day +2 - Massage

Wednesday July 18, 2012
Quail Run Lot 15
Moffitt Cancer Center room 3715

 

The lovely sound of rain on the roof makes it difficult to want to get up out of bed this morning.  I’m sure if I weren’t spending my days in a hospital room, I’d be getting sick of the rain but it sounds soothing and soporific this morning.

Since the major eater is no longer eating here I find that I need to cook up some of the food in the refrigerator in order for it to last long enough for me to eat it.  The greens are looking limp.  So I take care of that, get myself some breakfast, talk to a couple of friends who call this morning and get my food packed up to take in to the hospital.  I bring some clean pillow cases for David’s orthopedic pillow.  I gave one to him and one to Carrie several years ago for Yule after my chiropractor recommended it to me and I loved mine.   They love theirs too.  But Moffitt only supplies linens for their beds and pillows.  That’s OK, no problem. 

I don’t like to leave myself a mess to come home to so I have to clean up all the dishes and pans from cooking.  I find our little blue compost bin is full so that needs to be emptied.   And with all the rain, I have to go up on the roof again to sweep off the water that is collecting on the slide toppers.

Eventually I get everything together and throw my three bags over my shoulders and am out the door and on the road for the 30 minute drive to the hospital

When I open the door, it is dark inside and soothing music fills the air.
Here is what I see.  Actually she was doing his arms but moved to his feet by the time I get my camera out and her permission to post her picture.

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Looks nice doesn’t it?  I am very pleased that Moffitt does not expect these caregivers to volunteer their time.  They are paid to provide these services to the patients.

 

David’s had a rough night Tuesday.  He was up every 45 minutes with painful urination.  Apparently one or both of the medicines given him for the hiccups or nausea has given him the symptoms of a UTI.  They checked and he doesn’t have one so they’ve taken him off the baclofen and compazine and put him on flowmax.  They have him on a four hour iv drip of saline when I arrive.  The masseuse has to work around that and has no problem.

 

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Everything is back to the current new normal and he’s feeling pretty good at this hour.  His numbers have dropped again today, especially his white blood cells.  As you can see they have dropped to 1.73 from 5.5 yesterday and from a high of 8.18 on Sunday.

Last night his night nurse, Miguel, went over the calendar between now and probable discharge.  So we have a good idea what to expect.  His numbers will continue to drop.  Side effects like nausea, diarrhea and mouth sores may increase as the numbers reach nadir sometime this week-end.  Hopefully around next Monday they will begin to give him neupogen again to encourage his stem cells to multiply just like they did before collecting them originally.   Once the numbers start back up his hair will begin to fall out and he’ll have to decide whether to have his head shaved or just let it fall at will.

So the other notes on the calendar now read GOSF on Monday the 23rd, Day +7.  This is when they are speculating he will be ready for neupogen to encourage his stem cells.  This may cause fevers on Tuesday and Wednesday.  Hopefully his numbers will begin to to up again on Thursday July 26.  Increased baldness is predicted to begin on Saturday July 28.   If all goes well, discharge from the hospital could be on the 31st. Then it’s off to the half way house where I really will be on duty 24/7.  Lucky for me the nurses and techs are doing most everything now other than running errands and chiding him for not chewing enough ice, not drinking enough water.  Mostly, I’m just providing the entertainment.

 

None of this is set in stone since every patient responds differently but this week-end will be the telling days for the really uncomfortable side effects as the cell numbers drop to zero.

 

The masseuse leaves and his technician arrives to do vital signs.  Soon thereafter his lunch is delivered.  He’s having spaghetti, garlic bread, green beans, fresh fruit salad and water.  He says he can still taste things and the hospital food service gets good marks.  Hospital food is notoriously bad, at least at the University of Virginia, but he says not so much here.  Good news!

 

Around 3:3O, a harpist and the art therapist show up together at the door while David is in the bathroom just after he gets unplugged from the 4 hours of saline drip.  I apologize and ask them if they can come back since he really must get his 2nd march around the horseshoe in before it gets too late.  They both say no problem.  The harpist says she can come back tomorrow and the art therapist says Friday.  

 

That sounds much better to me anyway.  Why have all 3 of your fun alternative therapies in one day.  One a day sounds much better so I’m glad I’ve made that executive decision.

 

We are off on the march around the horse shoe by 4:00.  We do 6 “laps”.  Remember that’s twice the horse shoe per lap. He says he did 5 before I got her this morning.  So he only has to do it once more before bedtime.  We often pass other patients on these round and rounds.  None are walking as fast as we are.  If he can do it, I want him to do it so I set a pace and tell him to let me know when it’s too fast or he’s becoming tired.  No Carrie it is not as fast a pace as I normally walk.  J

 

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When we get back from the walk he does his lung exercises.  This little machine is called a respiratory spirometer.  You empty your lungs and then breathe in through the apparatus trying to keep the little ball on the right in the middle of its column by drawing a steady breath while at the same time raising the big blue cylinder to the top.  The cylinder is graduated to show how much air volume you are taking in.  A healthy person can send it to the top drawing in a full 2500 ml.  When he finds he can’t do that consistently then he’ll have to practice and exercise to retain his lung capacity, possibly using this little thing 10 times an hour.  For now he is just checking to make sure he can do it.  And he can.

 

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After all this exercise he takes a short nap. Notice the new socks.  These are no-slip sox which he does have to wear if he is not wearing shoes in his room.  But when he goes out into the hall way he must have shoes on.

 

When he wakes dinner is still not here and he has some crackers to keep his stomach happy while he waits.  Dinner seems to be getting later and later each day for some reason.  It started out being at 4:45 and has slowly slipped away.  Today it arrives at 5:50pm which is about as late as they ever serve.  No matter for us since that’s when he normally eats at home anyway.  6-6:30 pm. 

 

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And now, to your questions:

Several commenters asked about masks.  First let me say that you are not permitted on this floor if you have a cough or a cold or anything that might even hint at a virus or bacteria.

David’s situation is immunosupressed at this point.  He does not have an infection luckily.  So no one has to wear suits or masks to be in the room but they all wash their hands upon entering and none of them touches him or anything he has touched unless they have gloves on. 
Of course the massage therapist is excepted here.  She uses antibacterial creams.

I did see the harpist suiting up to go into a patient’s room and that’s because that patient does have an infection and they do not want to bring it into anyone else’s room so the suits and masks are destroyed when they come out of that patient’s room. 

We have been told numerous times that people don’t actually get a virus or any bacteria from the air unless of course someone sneezes in your face.  Nearly everything comes from their hands to your hands to you.  You touch something like a grocery cart or a door handle that someone with a germ or virus has touched and then you rub your eyes or put your finger in your mouth for any reason. BINGO!   So wash often.  That’s the real way to keep germs at bay.

Unless things really crash, he won’t be bubbilized as Roxanne put it.
Annie, he does get to keep those AWESOME sox.  He has purple, yellow and now 2 pair of green.  Sadly there are no more colors to collect.

His “eau de corn” was very short lived.  One day.  He didn’t smell it at all today.  Some folks have it as much as a week.  Some smell  like garlic.

I am extremely happy that so many of you are following along with us and commenting.  I’m amazed that you seem to like all this detail but that’s good since it’s the only thing I have to write about at this point.  Those comments make my day.  Thank you so much.  Keep them coming.

30 comments:

  1. I have to hand it to David. I don't think I could go through all this, and I'm sure this isn't the worst of it before he begins the climb back up. (I would just collapse after the respiratory spirometer :~)

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  2. I am so glad to hear David is still doing relatively well.

    I have eaten at the Florida hospital cafeteria quite a few times while there with Mom and found it to be quite good and with a lot of variety. I'm not a good cook though, so I'm not hard to please! Glad David still has an appetite.

    I do find all the details interesting and find myself looking at the charts with his blood counts. Thanks for answering the question about the masks. I guess they know what they are doing.

    I'm sure things are going to be a lot more difficult for you once you get into the "halfway house."

    Take care.

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  3. I was just discharged Saturday following emergent appendectomy last Wednesday. My socks are cloud blue, laundered and tucked in a drawer here at home now. :) Yep, I had one of those spirometers, too! Keep suckin' away at that, David! You're doing great! Sherry, you hang in there and get you some "you" time while you can. :)

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  4. I can't imagine how you are not becoming overwhelmed with all of this stuff. What a journey you are on...

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  5. You are making the Energizer Bunny look like an old rusty Model T. All the details you take care of, even sweeping the roof, then zipping over to spend the day with David.

    I think you deserve a massage!

    David looks great with all he's going through, we'll keep the fashion police off his back for those funny socks he's wearing... ;c)

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  6. It's very interesting to read about this...it's amazing how it all it coming together and seems well organized. It's great that you are keeping track of everything and somebody out there will really appreciate the details. You should write a pamphlet for the hospital on these procedures!

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  7. So far, so good!! There seem to be times when the expected brings and element of comfort. (I have grown to fear the unexpected!) Hoping you both are able to keep your spirits up. I like that they are providing those alternative therapies. I have never heard of them being provided in a hospital setting. Sounds like they have really gotten with the Patient Centered Care Program. A happy patient is a healing patient!

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  8. It is so helpful to understand the procedure. Thanks for sharing this with us. Just wish you didn't have to go through this. But so far you two seem to be holding your own:o) Take care and hope the side effects are minimal!!

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  9. Happy to speak with you this morning. Taking some classes tomorrow at Apple Store! Will get the puter keys clacking with my story that I promised!

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  10. So, one more day down. You have me wondering. Do you take notes or can you keep all the details in your head?

    I think what most commenters are thinking is how enormously helpful your blog will be to those facing bone marrow transplant. I think it will be very reassuring and helpful to other people.

    I was surprised that the doctors encouraged my little grand niece to continue with school even with the risk of catching a cold from other children (which she did). Her doctor felt very strongly that it was important for Mary to keep as normal a life as possible through her ordeal. One of her little friends is going through a marrow transplant, now.

    When Mary's numbers got really low, she wasn't permitted to eat fresh leafy greens, and had other restrictions to her diet.

    The hospital sent a team to her school to instruct the teachers about how to make it as safe as possible for Mary to continue going to school. Amazing what these big centers do. It's easier on my niece, now, because she's not in school. The Children's Center has a summer camp for children with cancer and their siblings so that is most helpful and less worrisome for my niece and her husband as they have medical personnel on site.

    I laughed at your remark to Carrie. I *used to be* a very fast walker--just could never get myself to stroll. Now, I wish I could just stroll! I'm sure it helps David for you to set the pace.

    We can all say only so many times that you and David are in our thoughts, and we're on the edge of our chairs until you get through this and into the halfway house with as little suffering as possible. You both are an inspiration for so many.

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  11. You are both definitely troopers!! So glad to see David is able to still eat without the nausea. Sherry you definitely deserve a massage. How you keep on top of everything is beyond me. You both amaze me with your strength. You certainly seem to have everything under control. Thank you both for allowing us all to travel this journey with you! Hugs and prayers.

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  12. The different therapies (especially the massage) that Moffitt offers is really nice. We'll keep on praying...you guys keep going on your end! Ditto on Nancy's comments about side effects. :-)

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  13. Lee and I follow you daily and just want you to know both of you are amazing and are in our prayers daily.

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  14. This is wonderful Sherry. Thank you for everything you do. I'm exhausted just thinking about your days and what all you have go through just to be here. IT means everything to me!

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  15. Looks like a lot has happened while I was away. Glad to read that things are going well; will have to try and catch up on your past posts for the full history.

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  16. Y'all look great despite the hospital backdrop. Actually, I think that y'all look a lot better than I do right now! I know that this is an up and down process and I'm thinking of and praying for you every morning. Hang in. Hugs to you both.

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  17. Following along with you two and finding it very educational. I know things will get tougher as you get to the "half-way house" so please know we are sending you both our thoughts and prayers!! You are both awesome!!

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  18. Still praying that the side effects will be minimal. Pleasantly surprised to hear that the hospital food is good -- that's definitely a plus. Hang in there. One day at a time.

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  19. I was wondering the same thing, Sherry, if you make notes or if you remember it all and write it later. Hopefully the writing itself is therapeutic for you in a way. I am amazed at the detail that you are writing about, the complexity is so overwhelming just to read I just can't imagine living it. One foot after the other, I guess.

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  20. Sounds like Dave is going through much the same as our friend Steve, here in England. We didn't have to suit up but we did have to use the antibaterial wash before going in and again after coming out from our visit with him and also we wouldn't have been allowed in if we had any kind of cold or cough.

    Nice to see that Dave has an appetite, he needs to keep his strength up. It is great that you are documenting it all, our friend Glen is as well. There are many people out there that need to see how other are dealing with it.

    We are thinking of you two and hope things continue to go well and that Dave will be out of the hospital soon.

    Kevin and Ruth
    www.travelwithkevinandruth.com

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  21. When this is all said and done, you both deserve to spend many days basking on a deserted, peaceful tropical beach.

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  22. I am glad they are able to keep him comfortable. I think everyone is asking the same questions. I hope he does get out next week.-- Are you going to go back to VA when this is all over or are you going to continue traveling around? I sure would like to come see you both again. I do enjoy all the details. I told you it's just like being there, and I know everyone is thinking about you and rooting for David.- Take care Cindy

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  23. I do hope they can do something to help him sleep better - the nights sound like the most difficult part at this point. I'm glad you are the motivator - getting him to walk faster than he might - I will start encouraging him to just 'do as you say' - hopefully that will make the half way house experience better for both ;) It's nice to have the number details and some info on what to expect and when - of course, nothing is set in stone - it really is one day at a time. Sounds like they are taking good care of him there. Great outfits - flowery shirts and colored socks!!

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  24. Another day in the life of David and Sherry. This is actually quite the adventure of its own, although maybe not what you'd planned. Uncle Dave seems to be doing so well from the sounds of your blog. I don't know how you both keep such a positive outlook, but I do know that it matters immensely. Hoping things continue to progress as they should - seems to be going well now. Always in my thoughts... Thanks for keeping the updates coming!

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  25. Smart money bets on D.B. to whiz through this weekend's predicted ion storms with deflector shields on full power. Nary a plink in his hull will be found. Just keep a sharp eye on that starboard nacelle... you know how it likes to act up ;-)

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  26. So glad David has his appetite,and good food to boot! Amazing that they provide 'spa' type therapy for patients. They should provide that for caregivers too!

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  27. I have a pair of bright yellow and a pair of gray slippers like his. If he needs more, I'll be happy to send mine down. They were compliments of Duke :) They did work pretty slick. Haven't worn them since I was discharged.
    I really like reading the detail that you include. I hope that doesn't seem too morbid but it's interesting and educational for me. I think of you both often and hope that if positive thoughts can affect an outcome, things will be just fine.

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  28. This sure is an ordeal for both of you and you seem to be handling the difficulties extremely well. Keep up the good work, I hope David's recovery continues at a rapid pace.

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  29. I hope that both of you find peace at the sound of the harpist... what a pleasant thought and a necessary "therapy" to help lift spirits. Love the foot and arm massages too... you go David... enjoy every minute of it. These are small pleasures amidst a difficult struggle. Again, thank you Sherry, for chronicling the daily goings on while David is in the hospital. Roger and I hang on your every word... just hoping for a little positive news. I do realize that each day presents new struggles... and it sounds like the hardest days will the the few right around the corner. Hopefully... after those days.. the "sunshine" will start to reappear. The rain is softly falling in Maryland tonight and the lightening is dancing around. I keep going out on the porch to enjoy it all. Yoda the dog does not seem to feel the same way as I do about the thunder and lightening. We are always remembering both of you in prayer.. prayers for strength and healing... and courage.

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  30. I love massages - I'm sure that's a luxury few people indulge in so what a treat to get a massage! The progress is very encouraging and I hope to see David out and about doing the things he loves sooner than the average person who endures this.

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