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

Henry David Thoreau

Day +8 – appetite wanes

Tuesday July 24, 2012
Quail Run Lot 15
Moffitt Cancer Center Room 3715

 

This morning is a non running day so the first thing I do is get up on the roof and sweep the water off the slide toppers.  Paul suggested in yesterday’s comment, which was seconded and thirded by others, that I just bring the slides part way in and put them back out to force the water off.  I’d previously been told there were some problems with that so I went to the RV Forums to see what they had to say.  There are a LOT of opinions about this and even about the importance of slide toppers in the first place by both owners of motor homes, which usually have them and 5th wheels which may not.  Here is what I find.


When you bring your slides in that opens the seals which are only sealed when the slides are fully open or fully closed. Several people at IRV2 said that, depending on the slide topper design, they got water inside their coach by bringing them half way in. There were also comments saying, and we’ve been told by the hydraulics people, not to bring the slides part way in and then send them back out but to always bring them all the way in and send them all the way out with the engine running.


Other people on IRV2 said just dip your coach down in front or in back to make the water slide off.  I don’t think so since we understand it is important to have your coach level before putting the slides out and besides this rain business happens every day.  I don’t think I want Winnona curtseying every day.  Too much trouble for us both.

SO, when I get older and can’t get up on the roof, I’ll probably take my chances on the unsealed slides and water but for now, I actually like getting up there. It isn’t hard or scary for me and it doesn’t take long. Next time I have to do it, I’ll take a picture of the views although I don’t know that there is much to see.

After that research and my trip up top, I want to go sit outside at least long enough to eat my breakfast.  But I’m a lazy cook.  I was the chief cook from about the age of 20 until about the age of 50 or so.  In the early years I was even a gourmet cook with all sorts of exotic foreign dishes.  But now, all I want is vegan and easy.  It’s the “easy” part that’s difficult.  J  So that leaves out pancakes, too much trouble and takes too much time for these hospital days.  Tofu scramble?  Great idea but also takes more time than I want to spend.   So I just cut up  a huge bowl of fruit – a thick slice of pineapple, an apple, an orange, a nectarine and a banana.

I take my books and my fruit outside to my gravity chair and use the picnic table bench as my table.

I cut off the top of my head in the self timed picture but that’s ok since the fruit bowl is better looking anyway.  If you think you’ve seen that blue sundress before, you have.  It’s my version of the “house dress”.  I put it on nearly every day between nightgown and the long pants and T shirt I have to wear to the hospital so I don’t freeze.

Day  8 020 

 

Day  8 022

 

Here’s the view from my chair this morning.  Pretty clear what sort of weather we’re going to have.

Day  8 024

 

I hear the unmistakable squawk of the sand hill cranes and see them fly in but can’t see where they land.   So I get up and walk down to the end of the street thinking they will be at the little “wetland” there. 

 

Day  8 025

But nope, they are out on the edge of the highway and I can’t get a clear picture through the chain link fence.  I got a couple of blurry ones but you don’t want to see them.

After a little readin’ and a little writin’ and a little eatin’, I go over to Karen and Al’s to take them our copy of “Forks Over Knives” to watch.  I hadn’t read that they’d already seen it.   While over there talking to Karen, up strut the two Sand Hill cranes who just stand there at the foot of the driveway.  Boy I could have gotten great pictures of them just standing around looking expectant.  Karen confesses to feeding them bread.  I tsk tsk tsk that they need to be wild and on their own so she waits until I leave to serve up the snack.  J

Time to get a move on.  Yesterday, I got smart enough to pack food for two days and leave it in the “family lounge” refrigerator on his floor at Moffitt so I don’t have to make lunch or dinner.  Yea!   All I have to do is get into my warmer clothing, pack up my “stuff” (books, journal, laptop, anything he wants, camera, jacket, sunglasses, keys), jam it all into my little red cart and I’m off.

When I arrive it seems that he just awakened from a morning nap.
He says the antibiotic given him for the prostatitis seems to have helped and he isn’t as sore and actually slept a full 3 hours at one point during the night.  A big thank you to PA Mark Honor for this med change. 

 

But he is still having trouble eating so after finishing his breakfast, and receiving another 1/2 hour drip of that antibiotic, he took another nap and has just awakened.

It’s a routine morning.  Same old, same old.  He brushes his teeth,  rinses with the saline rinse, shaves.  We set out for the first of the walks but Dr Perez comes for rounds after the first lap.

 

Day  8 028

She checks his lungs and his mouth and tells him he’s right on track.

When he talks about his mouth being sore and not being as interested in eating, the nutritionist perks up and stays after to encourage meats and milkshakes.  Obviously she hasn’t heard of Vegan but then I could talk a lot about the sponsorship of nutrition education in this country.

 

Day  8 029

 

He is still eating and his weight is steady at 136 so that is not a problem but he says  that although he still has his taste buds at least fairly well, starting yesterday he began losing his interest in his food and it now takes an hour or an hour and a half to eat his meal. He says his lack of interest is not a function of the throat problem, he’s just lost his appetite.   In fact, the throat problem gets better the more he swallows and returns if he leaves long intervals between swallowing.

His counts have not moved much other than the platelets going down.  He says he’s under impressed by the neupogen’s affects on his white blood cells.  But I remember from his earlier shots before collection that the neupogen, which was in a bigger dose than now, worked slowly while it was the mozobil they gave him that jumped the counts.   So it appears that slow and steady will win this race. 

Hemoglobin is holding.  Platelets are dropping so a transfusion may be in his future if they drop to 10.

 

Day  8 031

 

Day  8 032

 

German (pronounced Herman), his technician for today, comes in to do the vital signs. THEN we finally get to go back out to finish the walk.

 

He rests a bit when we return and then I encourage him to do the spirometer before lunch since he has to do his PT and other walk after lunch.  He manages to push it to the top once and to 2250 a couple of times but clearly his lung capacity is less on this day at this time.  Still good though considering his situation.

Lunch comes and he plods through vegetarian lasagna, green beans and fresh fruit.  Of course within 10 minutes of lunch delivery, his nurse, another Katie, whom we later come to refer to as Scarce Katie,  comes in for the one and only time today, to give him today’s neupogen shot.  Not sure who she is talking to on the phone but I sure hope she was busy with some other patient as the reason for her scarcity during an entire 12 hour shift.

She says “can I scan you” which I think is hilarious.  I know she means that she has to scan the drug and his wristband and they have to “match” before she can give him the shot.  But I’m picturing him on the conveyer belt running through the Whole Foods scanner head first.

 

Day  8 033

Eating his lunch takes about an hour and then he wants a nap.  He naps in his chair, lights out, for an hour.  With the sign on the door not one person interrupts him although I don’t see how the snorting snores don’t wake him up.

When he does wake up, he goes back to work on eating his salad and says that this loss of appetite sure does make eating take a long time.  It’s true.  His lunch was served at 12:40, it is now after 3pm.

He feels less well today than at any previous point.  The drop in numbers is beginning to be felt.  But for an Olympic eater, the worst part is the lack of appetite.

I go out to get another cup of ice for his water and find Jerry and Nancy walking the halls.  Yes I finally have their names.  Jerry’s had a blood transfusion so his numbers must have dropped further down than David’s.  He does not however have any mouth or throat problems.

When I come back in  German is back for more vital signs.  No fever, fine blood pressure and oxygen saturation.

Day  8 030

Time to do his PT exercises.  I count them off for him.  Because his platelets are below 30, he’s not allowed to use the resistance bands for his arms so he just “pretends”.

While he’s resting between PT and his second walk he reads the two cards that have been delivered today along with all the “business” mail that Carrie has sent.   The cards are much more interesting and turn out to be the best part of this day.

 

Day  8 035

 

Rest over, time for another walk.  We do all six rounds and he seems fine.  I get my dinner prepared and eat it so I can read to him when his dinner is delivered at 5:40.  He finishes his eating in just an hour but says he doesn’t feel well.  I wonder if he has eaten too fast.   He can’t pin point exactly what is wrong but says it’s his stomach.  He thinks he might feel better after a nap even though it’s a bit late in the day for that if he wants to sleep at night.  But I tell him that he needs to listen to his body and if it wants to nap and doesn’t particularly sleep all night anyway then he should go with it.   He says there is no reason for me to stay while he sleeps.  He’ll try to do his last walk when he wakes up.  I’m a bit concerned about leaving him when he doesn’t feel well but he insists that there really is nothing I can do and I suppose he is right.

He emails me later that Scarce Katie apparently left the scanner off its charger for the past 7 hours and its beeping woke him up about 15 minutes after I left.  No one came so he had to get up and go out to the nurses’ station to complain.  Now I know why I should have stayed.  Since he was up, he went for his walk.  After 3 rounds he was feeling worse so he let it go at that.  He can’t pinpoint anything that anyone could do to help him feel better so he says he’ll try a Turner Classic Film.  I hope it works.

Today definitely wasn’t a great day, actually his worst so far.  It is clear at this point that the low numbers are beginning to affect more powerfully how he feels.  I’ve never experienced seeing him both having trouble eating and feeling worse afterwards.

39 comments:

  1. Chin up ... the dips are bound to happen ... keep your eye on the future and your spirits up, hard as it might be.

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    1. You are absolutely right. We've been expecting dips and are glad to have put them off until now.

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  2. His lung capacity does seem good considering what he has been through. Sorry to hear and read this is his worse day yet..hopefully the sore throat goes away soon and things start to change for the best. It's very hard to eat especially if you have no appetite and it makes you feel unwell. Praying things start heading upwards soon and that he perks up and starts feeling better. Good info on the slides...I never knew that. Love the blue dress I also have a 'house dress' I love to kick around in.

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    1. Thanks for your wishes Elaine. Don't you just love the comfy feeling of old clothes? I know I do.

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  3. Boy, what a full day, Sherry! Still, David seems to be ahead of the game. Maybe just a bad day with his appetite. Even if I have a cold, my appetite wanes, so maybe this is a blip on the screen of getting well.

    It STILL amazes me how you both approach everything with a methodical well thought out strategy. You both always remain so calm.

    I think you told us that David takes Benedryl every day. I take it to be able to sleep at night. If I don't have it, I watch as the sun comes up. Amazing stuff. Wish it would work the same for David--maybe they can up the dose.

    Do you and David enjoy music? I found that I can transfer over 1000 songs to a flash drive, and they can be put on another computer, and I'm sure you could play them on your computer.

    I sent them to my sister, and she's so happy to have them--naturally, I'm sure she chooses the ones that she likes. She'll return the drive to me, and if you like music, I could mail it to you.

    I recently discovered Snatam Kaur--her music is so soothing--maybe it would help the sleep process for David, if played very softly. I can play it in the background while working on the computer and it's there, but it's not there if you know what I mean.

    Hoping that David has a good night and a better day, tomorrow. All in all, it still sounds like he's staying ahead of the worst.

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    1. He isn't taking benedryl Nancy because it conflicts with some of the other numerous drugs he is taking for other things. He has lots of music to listen to and definitely is still staying ahead of the worst. You are so sweet to offer.

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  4. I'm with you in spirit, but must say that some of these posts are hard to read. I hope things go better tomorrow.

    As for the slide toppers, I'm not good at getting on top anymore, so tonight I pulled them all the way in with the engine running. There were high winds along with a huge downpour. That's what works for me.

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    1. So glad to have you with us Judy. Skip over those hard parts, we appreciate your wishes. When the winds blow the slides come in all the way for sure. It's when there are no winds, just water and it sits up there that I'm sweeping.

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  5. Hang in there, not every day is going to be perfect, but as the doctor said, David is right on track. You can't ask for more than that. We're hoping for you both to have a much better day tomorrow.

    And since you still enjoy climbing up high on Winnona's roof, maybe you could book one of those tight rope walks over Niagara Falls... ;c)

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    1. I think I'll pass on Niagara and stick with the roof I know but thanks for the suggestion. :-)

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  6. The film was the 1938 version of Pygmalion, and it did help, although probably not as much as the lying in bed. Took my mind off the discomfort anyway.

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  7. Hmmm. I know that this is difficult and I hate to hear that it wasn't David's best day, but the light is around the corner. Y'all are so well-prepared and knowledgeable that I know that although some of this is worrisome to us, y'all know to expect these symptoms. Yay for that! Nothing exciting to report from here. It's the dog days of summer for sure. Take care! Hugs to you both!

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  8. I hope you don't mind a new reader of your blog as you go through this health crisis with your husband. I admire your good humour, determination, independence, and optimism in this difficult time.

    Hubby and I are Canadians but winter in our little Casita down south. We share your health consciousness, being vegetarians and daily exercisers. Somehow your husband's illness doesn't seem fair, but I suppose both good and bad are part of everyone's life.

    Best wishes to you both.

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    1. Hazel we are very happy to have you and thanks so much for you kind words.
      I just love those little Casitas. Hope we'll meet up at some point to see yours. It does seem very unfair that with all of our "doing things right" this happened to him. There is no clue where this form of cancer comes from but after reading The China Study we changed our diet to Vegan and I do think that may have something to do with how well he has done thus far.

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    2. Thank you for your welcome, Sherry. I'm positive that the good lifestyle and diet are helping David through this! You both have great attitudes too, and we know how important the body-mind connection is. You're doing all the right things! I'm sending good vibes your way.

      (The word I was looking for yesterday was 'strength'. I admire your strength! ;-))

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  9. Sorry to hear that this wasn't a great day. Happy, however, that he got a three-hour stretch of sleep last night, and hope that continues to increase. Hoping tomorrow is a better day. Hang in there.

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    1. Thanks Mike and Terri. It is amazing to feel that 3 hours of continuous sleep is terrific. But in this case, it is.

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  10. Can he order smaller meals or snacks more often. That whole meal might seem daunting whereas eating smaller meals more often might help (I hope). It helped me to eat that way on my yuck days after chemo. We are thinking of you both and hoping for the better times to come sooner than later.

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    1. They only deliver food 3 times a day but he can get "snacks" in between. His answer is to eat and nap and eat and just sort of snack on his food now that his appetite has diminished. We so appreciate your being with us. You more than many know exactly what he is going through. So happy you made it so successfully to the other side. Hope your wrist is improving smoothly.

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  11. It's disconcerting when someone behaves uncharacteristically. David, please behave characteristically. Scarce Katie ... I don't know - do we want her to show up more or not?

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    1. He's behaving characteristically in nearly every way except eating his body weight in food at each meal but I'm sure he'll be back at it as soon as he can. It is strange not to be marveling at how he can eat like that and never gain a pound. As for Scarce Katie I'm hoping she's not assigned again or we may have to "talk".

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  12. Felling oh so selfish, here, Sherry, because like Judy I am realizing that it is hard to read sometimes, and yet I wouldn't miss a word of it. Selfish because I can only barely imagine what it is to be living this, and yet you make it feel as if we were. Of course, we aren't, and selfishly we can turn away after reading, feel helpless, do nothing, but we aren't there. You and David are in the thick of it. My heart hurts, and it's scary, I don't think I could do it with your grace or David's courage. Wishing for you two better days coming soon!

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    1. Your comments are anything but selfish Sue. We appreciate all the wonderful support. We wouldn't wish this on anyone but hope our transparency will help not hurt those who read.

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  13. Sorry that David is having a difficult day. We have seen him eat and know he is not himself when mealtime does not light up his life;o)) Hope that appetite comes back soon and he gets over this hurdle in short order. Just know we think of you both everyday.

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  14. Sorry to hear David has a down day. This too will happen, and will pass. Keep your sights on the after..when he will be feeling better! FYI, for our slide toppers George uses a piece of PVC pipe, hooks it onto the arm coming off the spring that rolls it, and it unwraps the topper just enough to dip and roll the water right off. Works like a charm!

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    1. Thanks for the suggestion Laurie, I'll look and see if that's possible to do with ours.

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  15. You can definitely see in David's face that he isn't feeling well. Only one of his nice smiles in the photos.

    Scarce Katie needs to be reported in my opinion. I can't believe she was actually talking on her phone while giving David an injection. That's not only extremely rude, but dangerous. You know how distracted drivers are when they try to talk on their phones and drive. If you get a "customer satisfaction" survey please remember Katie. My nurse friend says hospitals really look at those survey's now.

    I hope today is a better day David!

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    1. She wasn't actually talking on the phone while giving the injection just while scanning his tag and the medicine. She did a good job of giving the injection since if the needle is not warmed and the shot done slowly, it can burn and David said it did not. Still she was certainly not warm and caring and that was the only time we saw her in his room all day. There are definitely nurses, and then there are nurses. But the same is true of technicians. Some are friendly and caring and some are just doing their job.

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  16. I see that "Sue" mentioned "courage" in her writings. It absolutely takes courage to face these days, and I just remind both of you (as you already know) to get through this just one day at a time. I am unhappy to hear that David had an unusually bad day. I understand that he enjoys food.. and eating... so this is disconcerting. Thank you for blogging the good and the bad...for it is the reality of dealing with this big bad illness. Loved hearing that at one point David got a full 3 hrs of sleep!! Today is planting day for us. Enjoying the new fence ... and now planting miniature grasses along one side to soften the look. Roger is on my team today... well kind of.... Simon is off to work... and I still smile when I see him walk out the door each day at 7:15 am. He likes what he does. Hoping tomorrow is a MUCH better day for David.. and that his appetite returns!!

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    1. One day at a time is exactly it Carol so I'm off to see what this day will bring. Had to laugh about Roger "on your team". It must be much cooler if you are outside working. Glad to hear that.

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  17. Sherry, follow your instinct. I left the hospital feeling like I should stay with John and he had a bad night. After that, I stayed when I felt uneasy.

    My daughter gave us Forks Over Knives and we are convinced! Now we are trying to work that with John's newly found diabetes.

    I am pleased that David is right on track! It helps to have the physicians encouragement....especially when feeling extra yucky. Hang in there David! I admire your choosing to eat, no matter how long it takes.

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  18. Not sure if you got my comment, I lost my connection just as I sent.

    Less food more often was helpful for Catherine when she lost her appetite. Milkshakes were one of the things she tolerated well- soymilk? The Winnebago manual actually recommends tilting the coach to dump the water. I never did it. I usually did what you do and swept them off but I worry about you climbing up there, with David in Hospital. Phiona was pretty slick, when I climbed up the other day- be careful!

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  19. Lots of comments this early in the morning - quite a following. It's good he has avoided mouth sores and loss of his tatste buds so far - appetite hasn't really seemed to matter much to me if I liked what I was eating (unfortunately) - maybe something too tasty to ignore is what he needs... Hopefully today will be much better and his numbers will start improving.

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  20. He does look quite tired in a few of those pictures, but, remember, we knew this would happen and that some days would not be good as his body works hard to restore itself with little reserves. This was to be expected and indicates that the chemo drugs are working in his body to do what they are supposed to do. I can't imagine Dad taking so long to eat a meal - I hope that improves soon - it is excellent that he is plodding through and making himself eat-that takes a good amount of internal strength (fight on Pops!). It is also excellent that he was able to sleep for an extended interval :) Mama, I think you're right that he should listen to his body, but at the same time fight with it to motivate and stay strong by eating and walking. Hang in there, Dad - better days are on the horizon. I love you both and wish there was a way I could lighten this load. Thanks again to Mama for being there and being a dedicated cheerleader! May this be the worst and may it improve in the days to come even if slowly.

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  21. Hey Sherry, As an "outsider" in the RV world, I haven't commented much, but am right here reading every word and echo the thoughts and prayers of everyone else. I want to ask about YOU! You are so focused on David (as you have to be), my question is are YOU being able to relax and sleep at night? You've acknowledge a long road ahead and are well aware the time to prepare your body for those days is now. Just wanted you to know that as concerned as we are for David, always remember that to give him what HE needs, you've got to take care of yourself!

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  22. Talking on the phone while scanning is unacceptable, but I’d not suggest alienating the folks you so desperately need by getting them reprimanded. Nothing wrong, however, with politely requesting “one-task-at-a-time” concentration while in your presence. More flies with honey… and all that.
    I’m voting for rice, pasta and mashed potatoes. Now is a good time to go carb-crazy. And Sharon is SO right, this is still the beginning. Slow & steady wins the race! Take care you two.

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  23. Sorry this has been such a tough day :(

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  24. Sorry this has been such a tough day :( And by the way...Aren't cellphones banned in hospitals? I think Scarce Katie is breaking the rules!!

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  25. I cannot think of anything to add to what everyone else has already said. (One of the problems with being behind on blog reading) Please just know you are in our thoughts daily, whether I get to your blog or not!

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