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

Henry David Thoreau

Day +5 – Slowing Down

July 21, 2012
Quail Run Lot 15 and Moffitt Cancer Center Room 3715


When I arrive this morning he is sitting in his chair.  He has had his breakfast with no incident, been for a morning walk and now seems more tired than in previous days.  His sleep last night was again a series of 45 minute naps all night long but that’s entirely responsible.  His counts are starting to affect him.  I ask how he feels and he says
“Like my brain is in slow motion.” 
I actually noticed this a tiny bit on Thursday and more yesterday. Later in the day he says
"My mental acuity is down, my energy is down, my stamina is down.”  He is considerably different in one day.  The downward spiral seems to have started.

And no wonder, look where his numbers are.  In one week his white cell count is down from 8.02 to 0.21.  He’ll be at zero possibly tomorrow but for sure by Monday. 


Day  5 009


Day  5 010


His nurse Michele comes in to start another saline drip.  He is still not drinking enough fluids.  He has a hard time remembering since with the saline infusions he isn’t thirsty but unless he drinks more they can’t stop the saline infusions. He also worries that so much fluid especially in the afternoon will wake him in the night.  Although this issue of water intake is something we have had “discussions” about for years.  They are making sure with these infusions that his kidneys are taken care of so they can take care of flushing his system of the toxins.


Day  5 002


Day  5 003


Shortly his week-end care team comes for rounds.  He talks with his Doctor about the decline in his mental facilities and his tiredness.  She says he’s right on target.  Not sure that makes him feel much better but it is the fact.


Day  5 006


Day  5 005


After they leave, I am on the phone with my father assuring him that I’ll get his doctor’s appointment transportation for next week arranged and get someone to come out and look at the leak in his roof.  At 92, and with macular degeneration, he gets very worried since he can no longer see to do the things he’s always done for himself.  He doesn’t want to go into assisted living and I don’t want to force the issue unless there is no other choice.   I pass the roof problem off to my sister-in-law who has it set up for 9am in the morning in no time.   Thank you Cindy!

While I am talking to to my father I see a call from Carrie come in.  I call her back, we chat shortly and then has a pleasant time as always talking with his daughter until just before his lunch is delivered. 

This is a very busy place for a tired guy.  When Michele hooked up his 4 hour IV drip earlier she also gave him some IV Zofran which works much better than yesterday’s medication and he has no nausea for either lunch or dinner.   That’s a great thing!


After lunch Christine comes to take his vital signs.  He naps a little bit more and then we go for the walk around the park.  He’s walking slower.  Not dragging but he’s breathing more heavily by the time he gets to lap 4 than he was yesterday.  Still he does all six laps.

He rests after the walk and then does the Spirometer lung exercises.  Usually he can take it clear to the top pretty much every time.  Today out of his ten tries he is still able to do that twice.  For the rest he gets “almost” all the way but he is clearly aware of the difference in his lung capacity.  He knows the exercise is important and he’s giving it good effort.


Day  5 012


He’s also doing a good job of pacing himself around all these things they want him to do: drink more fluids, eat 3 meals, take 3 at least four lap walks, use the spirometer, do the PT exercises, take a shower, get the infusion, have your vital signs taken 4 times a day.  WHEW!  Just typing all that out is enough to make me tired.

He wisely does one thing and then rests or naps before doing another. 

Time now for the shower where he has to make sure he does not get the dressing around his line wet.  This is pretty difficult.  We try to cover it up with a plastic shield of Glad Press n’ seal.  When he finishes it doesn’t seem wet to me but a tad damp as though the humidity had settled on dry clothing.  We’ll have the nurse check it to see if it needs to be changed.  He feels better with clean clothes.  Back to green sox.  He has 3 pair of those now.


Day  5 013


Dinner shows up at 5:45 and goes off without a hitch.  I heat up mine too and we eat together.  Afterward he lays back in his chair, the lights dimmed and I read to him until it’s time for me to leave.  As with many other times today, he isn’t sleeping, he isn’t sleepy.  He’s just tired and resting.

Day  5 016


After I leave he will do his exercises and take his last walk of the day.  I’m hoping tomorrow he can do his exercises earlier in the day.  With his decreased energy everything seems to take longer although he says that this slow down he feels make the days seem longer.  For me it seems like he was constantly needing to do something, people in and out all the time.  He closes his eyes for 10 minutes and someone opens the door.  Sometimes just to see if he needs anything.  This is very attentive and I don’t want to discourage it but tomorrow I’m going to open the blinds of the window by the sink so his caregivers can look in from the hallway and put this sign on the door until I leave.

Please check in the window to see if he is Sleeping.
If so, Don’t Disturb unless you Must.

Hopefully this way, if he is awake they can check and if not they can check later.  I must give Moffitt very high marks for their efforts to accommodate anything the family wants or needs.  I could spend the nights on his couch if we chose.  But we think it is more important for me to get the highest quality sleep I can while he has such good overnight care.

We’ve been expecting this turn of events, and now it is here.  I’m not sure he’d say he’s glad but we’ll both be happy to get beyond it and he has to go through it to do that.   Tomorrow is another day in that direction.


  1. Seems like everything (good or bad) is on track. I'm glad they explain all these things to you so that there are as few surprises as possible. I hope you are able to sleep as much as you can at night to keep up your strength too. Good idea to put the sign up!

  2. Well, Sherry, it sounds like you and David are right in the thick of it. I think it's good that you expected it so there are no surprises, and no extra worries that something has gone wrong.

    For an intelligent person like David, it has to feel a little unsettling to feel his mental acuity slipping, but he seems to be determined to keep up with what he needs to do. Again, good that he knew it might happen.

    Does he drink bottled water or water from a hospital pitcher? I find it difficult to remember to drink enough water so I bought myself a 64 oz glass container that I fill up in the morning and I make sure it is gone by evening. Maybe, if you haven't already, setting a goal would be helpful. I drink my water ice cold, but I've been told that room temperature water is absorbed more quickly.

    I know you're into tough times, now, so it is even more important for you to remember how many people out here care about you and David. I keep thinking about the 31st--10 days away so I find myself wanting to count down, but I realize there's some counting up to do first.

    Glad you got had help getting your Dad taken care of. You have so much on your plate. I don't know how you do it, but it's good that you had a plan ahead of time and know that you have to take care of yourself in order to take care of David.

    I know the days are long, now, but when David comes through this, and you return to dream, days will fly by and the two of you will appreciate them all the more because of what you have been through, together.

  3. Wow what a day. God love you still trying to provide the care to your dad while going thur all of this with David. Poor David how very scary this must be to feel such a change in his body every day. I'm so glad today was a nausea free day. He seems totally cooperative about the drinking,eating,walking etc. I'm so so sorry you both have to go thru this and I pray hard for a cancer free outcome! You are definitely a rock Sherry. And David is as well. God bless you both. It's good that he is right on target as the doctor said but wow !!!!! Take care I'm so glad you are getting your nightly rest,just wishing David was also. Thankfully he can nap between nursing visits and I think the sign on the door is a great idea.

  4. It appears that you are just about at the lowest point and now things will slowly improve for the better. I contiune to marvel how strong David is and how well he is handling this challenge.

    I know it is hard to leave David and go home to get your own rest but it is so important. You have to be strong for David because he really needs you now more than ever in your life together. Don't cut any corners on taking care of yourself. In my Coast Guard uniformed years, we had to ensure that we took care of ourselves so we could help others.

    You are doing great!

    1. Well, this is what we expected - a week of 'really hard' - it's a waiting game now for him to bottom out and start the climb back to feeling good and healthy. I really am glad that the hospital is providing such attentive care; that is excellent and the way it should be. I think your sign is a GREAT idea - let him rest as much as possible - the more sleep he gets - the faster the time will go by for him. Keep walking, eating, breathing, sleeping - that's really what it's about for the next week or so. I'm glad there is a daily blog so we can keep tabs on his numbers and how each of you is feeling. xoxo

    2. So good to see photos of David up and about... even if he is slowing down... he is still up and about. Sounds like this should "bottom out" perhaps tomorrow and then he can begin his ascent to better times. It is a helpless feeling to know that your body has become your enemy... and a war is being waged to set everything aright. Sounds like walking, blowing into the tube, showering, (hopefully eating!!) and drinking water are the landmarks of each day. The high points I am sure are your presence, Sherry, and the books you read to him. Hoping David gets some better sleep very soon!!

  5. It's very important for you to get as much rest as possible right now. Too bad humans can't store it. You will not be as lucky later, when you are the sole caregiver. I'm sure it is hard to watch David right now, but you can't get past this until you get through this.
    Sending good vibes for tomorrow.

  6. You can't get much rest in a hospital. I'm glad you are going to make the sign, and hope it helps.

  7. Luci is doing well, getting along with Harry the CAT!!! If the CAT does not run, then Luci is not interested :) She does not like going out in the heat, but would rather sleep on the leather couch with ac blowing on her, me too...
    You both take care...

  8. I feel so bad for both of you, and hope the upswing is on the way. I hope my attempts to show the beauty of Colorado has cheered you a little bit. It has amazed me with all you are going through that you still take the time to leave comments. (((HUGS)))

  9. I was thinking oh no, you have to take care of your dad's stuff, too? but thank goodness for Cindy!

    So, once the numbers go to zero it's more waiting for the stem cells to migrate and take hold?

  10. Wow! My heart goes out to both of you. Excellent idea with the sign. He needs uninterrupted sleep. Good that you recognize the fact that you also need to sleep. Prayers continuing.

  11. All I can do is send prayers, but you've got that from me as long as you need 'em.

  12. You two are just about there...the turning point...then things will begin to improve!! Glad you are taking care that both of you get as much rest as possible. David really is a wonderful patient. He does all that is expected and doesn't overdo. You are a wonderful advocate. Making sure his needs are met and he is a comfortable as possible!!

    Keep up the good fight and know we think of you everyday:o))

  13. Going up from the low point will have a positive effect on both of you -- hang in there.

  14. Oh David I am so sorry you are feeling so bad. I was hoping you were somehow going to whiz right through this. Is there nothing else they can do for his sleep problem? I would think a hospital could come up with something! If he could be zonked out and sleep a lot for the next few days, it would be wonderful.

    We have a few books on tapes he could listen to on his laptop if he wants to borrow them?

    Hang in there guys!

  15. Hopefully you are at that turning point and can see a sliver of light at the end of the tunnel. Good thing you know how important it is for you to get your rest too! Hugs to both of you! Keep on truckin'!!

  16. I think the sign is a good idea. I also think it is good that you are trying to get some better sleep. You will not have that luxury next week. Hang in there. You are in our thoughts.

  17. It is so very nice of you to read to him and stay all day- I am sure he appreciates it more than you will ever know. Scary being in the hospital and having to go through all of this- even if he does not say so---- Take Care Cindy

  18. won't be long until you are on the OTHER side of the big hill! Easier going down than up, that's for sure! And meaning, things will improve, NOT "go downhill"...arrrrgghhh...you know what I mean! Sparky sometimes puts her foot in her mouth and doesn't remove it except to change feet! No wonder David is tired. Hope the sign on the door works, it didn't during Kerry's hospital stay as a new mom!

  19. Continue to maintain strength through these grueling times, with firm faith that good times are soon to follow.

  20. Hoping the worst is almost over and the new is starting. Maybe when the numbers start going up the sleeping will be easier. Sitting in a hospital room all day and watching someone you care about in pain is difficult . God bless you both.

  21. Hopefully the sign on the door will help slow down some of the traffic so David can get some rest...Praying his count will reach zero and you can start the journey back up sooner rather than later.

  22. This comment has been removed by a blog administrator.

    1. Abby, If you see this, I mistakenly posted a duplicate comment so I came back and deleted my mistake. This one was the same as the one above.


Your comments are the best part of this blog for me.
I LOVE hearing from you!