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

Henry David Thoreau

Day 15 – tiring day

Tuesday July 31, 2012
Quail Run RV Resort Lot 15
Marriott Residence Inn Room 118

 

David’s alarm goes off at 6:15 and by 6:35 we are dressed and on our way to the morning buffet of which I AGAIN forgot to take a picture.  The kitchen give him a to go box to go and I get my breakfast from the buffet.  We take them back to the room to eat them.  He tells me he slept even better last night.  3 hours at a stretch.  I’m very glad for him.  My night wasn’t so good and I’m tired this morning.

By 7:00 we are on our way to Moffitt.  Good thing it is only 4 miles away since in the traffic on Fletcher Avenue in Tampa it takes 15 minutes to get there.   We arrive at the clinic at 7:17.  Our appointment is at 7:15 appointment for a blood draw.  There is only one other person in the waiting room.

 

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I object to appointments this early since I have learned by experience that they try to book everyone early and thus that is the least efficient time to go.  And I am right.   They do not actually draw his blood until 8:15.  We have waited an hour just to get the blood drawn unlike Sunday when our appointment was at 2:15 and we were out by 3:30 and done with everything.

We are supposed to have an 8:00 appointment with the PA after the blood numbers come but that doesn’t happen until after 9:00 and by the time we are totally finished we have been here 3.5 hours not 75 minutes.

But the news is good.  Two of his numbers are up.    

His White blood cells were at 10.48 on Sunday.  The normal range is 4-10.9 so he was actually at the high end of normal.  Today they have moved back toward the middle at 8.26.   This is good.

His hemoglobin was 8.8 on Sunday and is 9.0 today.  Normal is is 13.4 – 16.9.  Slow movement in the hemoglobin.

His platelet count on Sunday was 26 and today is 50.  Normal is 143-382.  Nice almost doubling of the platelets but still a VERY long way to go.

We have never met this PA before, he doesn’t know David or his story, but he tells David that he’s making excellent progress.  He says he doesn’t have to come back until Friday.  That’s 2 full days with no doctors.  Sounds GREAT!!  He also says that if things continue this way in Friday’s numbers then David’s next appointment after Friday will be the following Tuesday and they will remove his central line.  All of this sounds terrific.

When I ask how long he’ll have to wear a mask the PA says he doesn’t have to wear it anymore.  Really?   I’m not so sure I buy this story.  He just got out of the hospital 3 days ago.  I suppose it’s a matter of numbers.  If your white count is in the normal range you don’t have to wear it??   But his was in the normal range on Sunday and no one said anything.  And these are white cells which have lost all of their immunity.  

We haven’t even had time to write Quack Quack in orange pen on the beak.   I suggest he keep the mask on at least in the hospital and other places where there might be crowds.  He does.   I think I want a second opinion on this mask removal thing.

After the appointment we walk from the BMT Clinic down to the first floor and then over to the Inpatient Building and up to the 3rd floor where he asks about mail.  His Niece sent him a card and he didn’t get it before being discharged so he wants to know if they have it.   They tell him that when they get things for discharged patients, they send them over to the Clinic.   So he’ll just have to wait and hope it shows up.   On the way back to get the car walking through the hospital he is tired and sits down for a while and calls the Clinic just to check and see if they have it but they don’t.

When we get back to the room it is time for lunch after which he takes an hour nap.  He was very tired from the hospital visit.

He gets up for a bit and then is falling asleep sitting up so he takes another nap which is interrupted by the jarring ring of his cell phone.  I answer it but not quickly enough to keep it from awakening him.  It is a nurse calling from Moffitt to schedule his line removal for next Tuesday.  The only appointment she has will necessitate his waiting over 2 hours from the end of his appointment until they can get him in for line removal.  That will again make for a very long though not as early a day for him.

My sister in law calls to discuss my father’s doctor visit on Thursday.  I’ll be calling for transportation for him tomorrow and she has contacted the VA to ask that he be evaluated for home care services.   She is really a great help to me now.  I think she is a saint to be doing this for her father-in-law when his own son is not involved.  I am not happy with my absentee brother passing his responsibility off onto his wife whose mother in Ohio is also elderly and requires help.

He reads some emails, says his back is bothering him and then starts falling asleep again.  So he goes back into the bedroom to nap.   It seems that in spite of his good night of sleep possibly his long walk yesterday in addition to the 3 hours this morning has taken a toll on his energy.

While he is napping, I write an email to his Myeloma Doctor and ask for a second opinion about the mask. In less than half an hour I have my answer.  He doesn’t need to wear it if his neutrophil counts are > 1000 which his are.  So she seconds the opinion.  He’ll be all over it.  And I’m very impressed with her quick response.

David is back up at 4:00 complaining that it is cold.  I look up at the thermostat and it reads 74.  We keep the temperature at 77 or 78 but it keeps moving itself back to 75 and then I put it back up.  But this time it moved itself to 74.  A thermostat with a mind of its own.

He turns the TV on for more Beach volley ball, this time it’s the men with 6’ 9” Dalhausser playing Spain.  Score is tied at 18 when he turns it on.   He’s doing commentary….”those guys are amazing, they jump straight up in the air.  Two huge guys with their full force slamming that ball.”   But the US loses this match.  21 to 19.

I fix salmon and broccoli for dinner.  Catherine’s Custom Cookie is dessert.   David wanted to go out for a walk but has discovered that for reasons we don’t understand, his feet are terribly swollen.  He really hasn’t been on his feet that much today.  Most of the morning was sitting waiting and most of the afternoon was lying down.  He takes his temperature and finds it is 99.2.  Not a big deal but up.  More than his usual 98 point something or 97.9.   He also says his back is bothering him again.  So he lies down on the sofa and I put pillows under his feet.  

I go out to the lobby to check out today’s “hospitality hour” which is listed as being nachos night.   Sure enough there are quite a few people eating and getting nachos.  There are the big nacho chips and the regular heated cheese to drizzle over them.   There is also a spinach topping which I prefer so I bring a small container of them back with me.  They also have other nacho type toppings.  Grated cheese, sour cream and I don’t remember what else.   Wine is also available.   None of this is something David can eat from a buffet and he’s been saying all day he isn’t hungry.  Meanwhile, I’m eating everything in sight and having dessert for every mile.  Wish I could just hand him the 10 extra pounds all this ice cream and Almond Joy eating is costing me.

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When I return I show it to him, no interest at all even if he was permitted to eat it.  He falls asleep again.   His body is definitely trying to tell him something.  And just this morning it seemed like everything was progressing fantastically.  I work on the blog and get up to take his picture napping.

 

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He wakes up and I wonder if the camera has awakened him.   He wants to go for a walk.  His feet have gone down a little but he’ll need to put them right back up when he returns.   The park is only open until 8pm, it is now 7:05, so I suspect this is the reason he wants to go right away.  He hasn’t, we haven’t, really been outside all day.  It has become a very claustrophobic life for us both.

When we go outside we find that it has rained and we didn’t even know it.  I feel very disconnected from the natural world.  It is a hard thing for me. 

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We walk for 20 minutes and turn back. I stop dead when I see this out of the corner of my eye.

 

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I wonder what it would be like to be so powerful and free.   As we walk back we talk about their freedom - no hunting for a great campground or paying campground fees, no gasoline to buy, they don’t even have to drive in order to get to great places.  :-)

 

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When we get back, He puts his feet up and watches the Olympics.  How convenient to have something so interesting on TV just when you need to do a lot of resting.   His upper back is still bothering him.  His feet and ankles are still swollen.
Tomorrow is another day. 

25 comments:

  1. always grand to have another day...

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  2. It's great that he doesn't have to wear the mask. I hope the swelling in David's feet doesn't last long. Gee, it seems that when some things go better than you expect, other downsides are right around the corner.

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  3. And the bird is saying 'look at those people, they only have to come outside after it stops raining, they go inside to a nice climate controlled bedroom, and other people just put food out on a buffet for them and they graze to their heart's content.' :)

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  4. Great news about the mask. Recovery seems to be moving along fairly quickly--at least as far as I can gauge it against Mary.

    You're both tired. I think you're just realizing what an ordeal you've been through and are still going through. I think it's a great sign that David wants to get out to walk.

    I think it's normal to get claustrophobia. Little steps. Little steps.

    Hoping David's back pain goes away (did they ever tell you what it is?) and you both get a good nights sleep. Just imagine how you'll feel when you both get a FULL night's sleep! Like being reborn, I bet!

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  5. He's gorgeous! What is he, an osprey? Stop laughing. I don't know from birds.

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    1. Yes, I am laughing. Not an osprey. It's a red shouldered hawk.

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  6. Oh, goodness, I have to laugh at myself. When I saw your next-to-last picture . . . "when I see this out of the corner of my eye" . . . I thought, "Monkey bars? They wish that they could play on monkey bars?" I didn't notice Mr. I'm-Looking-For-Dinner. Oh, me. Thank goodness I'm not your photographer or there wouldn't be *any* pictures as unobservant as I am. Yes, it would be nice to be powerful and free, but although he does not have to hunt for campgrounds, his method of obtaining meals might get old after awhile! I don't think that I'm up for killing every meal!

    Sorry about the excessive wait at Moffitt. Bummer. That's wonderful news about his numbers though and his progression to no mask. Getting there! Hang in and take care! Praying for you daily! Hugs to you both.

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  7. Things may be a little slow but those numbers sure are looking good.

    Speaking of looking good, it'll be sad to see him without the duckbill, it made him look so distingushed... ;c)

    You can save it and wear it at the Carolina Clan meeting. The way David is getting better you will be there. We're thinking positive. :c)

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  8. Sherry, you certainly deserve all the comfort food you want, girl! David, I do hope you feel better tomorrow. Hang in there, you two! Gentle hugs from New Jersey . . . (yes, of course I'm wearing a mask! )

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  9. Aaah no more beak? What a fashion statement!! Really it's good to see progress. I was watching that volleyball game too. I tend to yell at the TV and Ken keeps reminding me they can't hear me.. Makes me feel better though - as long as we win! Ken is finally home from the hospital. Maybe you both can go home soon!! Take care!

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  10. Hanging in there, thanks primarily to my dearest. Thanks to all of you too for all your support - it all helps!

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  11. Very glad to see the improvement in the numbers slow and steady wins the race. So relieved to see he is sleeping longer stretches at night. Dig into that comfort food you deserve it Sherry! Glad he is able to get rid of that mask it must be hot. Hang in there you will both be home free soon.

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  12. The body needs rest and sleep to heel. I think that is a good sign. Tomorrow is indeed another day. Let's see what it brings.

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  13. Hopefully all that sleep means he's in the healing/regenerating stage. All those upswings in numbers are taking a lot of energy! Here's hoping to less back pain and more time to walk and enjoy the park tomorrow. :)

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  14. That's wonderful that his numbers are up and GREAT that he got a good night's sleep! Not surprised that he napped a lot today. He has a lot of sleep to catch up on. Sure wish the back pain would go away for good! Prayers continuing.

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  15. I take David's napping as a good sign. Body needs rest for sure! Good to see his face without the mask :) I'm sure if he really wants to he could wear it :)

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  16. Great shot of the Hawk. They are my favorite. So glad you get to skip a couple of days of doctor visits.

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  17. Glad he can ditch the mask! Bet his body is trying to make up for all the lack of sleep. He's been sleep deprived for a LONG time. thought and prayers still coming your way...

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  18. Good news on the numbers and that David got a more restful sleep. I think that when your body tells you a nap is in need, it is telling you for a reason! Good thoughts are being sent your way!!

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  19. No mask.... that must make David feel better. Good numbers, too! But, alas,,, two steps forward, one step backward (the feet and the lack of energy). Guess you can't feed the hawk... he just might like a little tidbit or two from that breakfast bar. Wonder if the hawk ever gets cold like David? Hoping that today both of you are able to be outside a little more... it is just refreshing to smell the air in the park. Amy is in the middle of her 340 mile canoe race.... leaving from St. Louis. Terrible heat. She is scheduled to finish late tonight ... or in the wee hours of Thursday morning. Nice that they scheduled the Olympics NOW for the two of you... you certainly need the diversion. Please stay strong.... one day at a time... hoping for a better day tomorrow.

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  20. Sorry to hear today wasn't as good as the day before. I wonder if he over did it a bit. I'm with you on the second opinion on removing the mask. How great the doctor responded so quickly. That certainly hasn't been my experience with doctors.

    I hope today is a better day for both of you!

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  21. Yep, our bodies are much smarter than their owners;o)) If you can turn in to your body, it will tell you what it needs. Seems that for David, that is rest!! Making up for all the sleepless times he has had.

    The numbers sound great and patience is the key wword. They are all moving in the right direction... remember, it took months to take them down to 0!! It only be a couple weeks... I think you are way ahead of most!!

    We got very connected to nature yesterday. High on a mountain with a thunderstorm;o(( Really would have like to been that hawk and took off in a hurry!!

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  22. So glad to hear that his numbers are progressing so well! I will miss the duck beak pictures though ;)

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  23. Happy news all during the morning and then a downward turn with the swelling and the fever :( That is great news that he can look like David Boyd and not David Duck and that his numbers are rising - it's clear that platelets and hemoglobin have a ways to go. But, that is progress. I'm glad he has the olympics to watch and that you have at least a little time to walk more than around a hospital ward and see beautiful birds.

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  24. That hawk is adorable...so tiny and sweet. I follow your journey and lust for your strength! May that sweet hawk be sending a sign that all will be good and may continue strength and healing come your way. Numbers up, UP, UP!!!! ~cozygirl
    itsacozylife.blogspot.com

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