Day +10 – Sweets & Irritation levels

Thursday July 26, 2012
Quail Run Lot 15
Moffitt Cancer Center Room 3715

 

Since today is not a running day, I’m up early and determined to get to Moffitt earlier than usual given how badly David was feeling when I left last night.  I make some breakfast and eat it outside to the sounds of traffic and air conditioners.  No lawn mowers or blowers, it is too early for them.

 

 

When I returned home last night, it was dark.  I usually look at my “rain gauge” but I just stuck my finger in the clay pot drain dish that I leave on the patio to let me know if and how much it rained during my day away.  It was empty.  No need to do the slide toppers in the morning. The weatherman had said only 20% chance of rain both yesterday and today. 

But when I get on line to post some comments and make some of my own, Karen says in her comment that they’d had a good storm in the afternoon.  Not sure why none of that water was in my makeshift rain gauge last night or this morning but I take my broom up on the roof and there it was, water on the bedroom slide topper,  I sweep it off.  My neighbor yells up and asks me if I want to use his blower for that.  I politely decline.  What’s with these folks?  Does a blower really do such a much better job than a broom or a rake?

 

Next, I walk up to check the mail and find a package slip inside the box.  I’m hoping they are open at 7:30 in the morning and they are.  It’s a pretty big box and HEAVY.  Now what could this be? 

wearing my favorite shoes

 

I open  it up and am shocked to find that blog reader Betty has sent me a GIANT box full of Almond Joy.  Pounds of Almond Joys.  I’ve never seen such a big box full of so many almond joy candy bars.  This looks like a box they must use to FILL up the vending machines.

 

I’m just overwhelmed with the generosity of my blog readers.  Thank you Betty!  Between the J-M-C ice cream and all these Almond Joys, I’m gong to be having all the sugar highs I need to get me through these days.  Wish David could enjoy eating as much as I’m going to enjoy these.  They should last me for a VERY long time.  This is a BIG box.  If I can keep from over doing, they will last long enough for David to share them.  He prefers dark chocolate so you’d think he’d like mounds but he’s also a serious nut lover so he enjoys both.  I REALLY WILL make sure there are some here for him when his appetite comes back.

 

I may have to up my running to daily in order to compensate for this drastic change in my diet which now includes an over abundance of ice cream and Almond Joy, nearly all my worst vices.  With the wonderful blog friends I have, I am one happy camper and actually don’t eat an Almond Joy right this minute.  But I do pack one with my lunch/dinner.   I am VERY proud of my will power.  LOL    Many many thanks Betty!!

 

 

Not quite so happy when I get to David’s room.   I come in and find him asleep on his sofa.  He’s hooked up to a machine but it doesn’t seem to be dripping anything.  I look at the timer which shows zero.  So I assume that whatever he was getting has finished.   He’s deep in sleep and snoring when an hour later his nurse comes in.  He wakes up and is clearly more tired and has less energy even than yesterday.  

 

I tell her about the nothing dripping situation.  She looks and says “oh well the potassium didn’t finish.  I didn’t have time to come and check”.  I later find out from David that he was hooked to the machine an hour before I got there.  So now it’s two hours but nothing has been accomplished.

 

His platelets are, as I assumed, below 10 so she’s come to give him the platelet transfusion.  They are the yellowish looking fluid in the bag on the pole.  It will take about 45 minutes and then he has to have the rest of the potassium, an antibiotic and the saline drip.  In the past the saline drip has taken at least 3 hours.   I don’t see how he will possibly have time to do any of the things they have assigned him if he’s constantly hooked up to this machine.  Especially since with his fatigue he needs to take long rests between activities.

Again his white cells are inching up, his hemoglobin is inching down.  Only his platelets have fallen under the magic number which for them is 10.

 

 

He asks what time I arrived this morning and tells me that if I’d been 10 minutes earlier I could have seen him throw up.  I’m thinking poor him, lucky me.  He ate his breakfast and then lay down on the sofa in the sun to sleep.  Mark Honor is off rotation and another PA is now on who came in and woke him up to listen to his heart and lungs.  The sitting up apparently made him throw up his breakfast.   This is JUST the sort of thing I wanted to be here early enough to try to help him avoid. 

As he’s telling me this I am not very happy with a PA who feels he has to listen RIGHT NOW to the lungs of someone who is barely sleeping at night while they are sleeping and I say so.  His nurse Michele gives me some snippy defensive business about how he has to do it.   My irritation is at level two.

The rounds group comes in about then and everyone but Dr. Perez is a different person.  She asks “how are you”.  David feels like shit, his eyes are at half mast, he is trying to get up the energy to reply, she is clearly in a hurry.   So I say “not so hot” and she begins telling me how he feels.  How well he’s doing, how in comparison to everyone else he isn’t sick, how this IS a transplant.  I mention the vomiting, she looks at David who explains and the PA has the audacity to say “Oh so it’s my fault”.   I want to smack him.   Irritation level has reached 5.  This is the level at which all desire to have pictures of these people and their “help” disappears.

 

Later, When I mention how dumbfounded I was at the PA’s response, David tells me he thinks the guy was kidding, perhaps, but if so, it’s a pretty poor joke.   It’s clear David feels terrible and yet Perez just goes on and on about how OK everything is even telling him that he has no pain since they have fixed the prostititis.   I ask him if this is so but she doesn’t even hear his slow and quiet response that it “seems a little better”.  Doesn’t sound quite the same as “fixed” to me.

His responses are slow and apparently she assumes he isn’t going to respond and just plows right on.  She looks in his mouth with a flashlight and begins talking about how his mouth is clear so he doesn’t have Mucusitis.  He tries several times to say something but she just runs right over him talking about how some people have terrible mucusitis and even sort throats.  I wonder if she even notices his attempts to say something or has forgotten that he DOES have a soar throat. 

My irritation is now at about stage 7,  so I say loudly looking at David, “IS THERE SOMETHING YOU WANTED TO SAY DAVID.” 

She actually shuts up and listens as he describes what is clearly a mild case of mucusitis.  He describes being  awakened by a mouthful of very salty mucus.  I ask him if his throat is STILL sore.  I’m trying to remind her that this IS a man who has had a sore throat for the past few days.  She looks at him and actually waits for him to reply  “it’s not AS sore”.  She looks at me with a smile. 

 

I ask if ice or ice water would help the build up of mucus.  She says they have a mouth wash for it.   Someone says they will get that for him.  My guess is that I will have to go out later and get it.

David is exhausted with all of this so instead of giving the two of them a piece of my mind, when she says “anything else”?  and he shakes his head no,  I say nothing.  Irritation level 9.  Amazing self control demonstrated here.

 

 

His technician was taking his blood pressure just as they came in and it was 146 over I don’t remember what so she comes back after they have been gone for a while to do his vital signs again.  That pleases me.  Irritation lowering.  

 

 

 

 

 

His BP is down to 137.  Vital signs includes the little oxygen sensor on his finger  that I find so fascinating.

 

His nurse finished hooking up his platelet transfusion without explaining what is going on.  After the non drip hook up of two hours this morning I’m not so trusting.  I look at two lines going into one drip valve going into his central line.   Clearly the platelets are dripping, the saline is not.  So I go out and ask his technician Fadila so see  if she knows if that’s right.  She says she doesn’t but tells me his nurse is back at the desk in the other hallway.  I walk over there and ask her if they are both supposed to be dripping, she looks up with that look that people get when they think you are being too pushy and says no.   I wait for an explanation, she gives none, I leave.   I don’t want to make things worse with her for David.  So I bite my tongue AGAIN.

When I return to the room Fadila has sent another very nice nurse in to answer my question.  When I ask if the platelets dripping alone is right, she smiles, says yes and then explains that the saline is hooked up to flush the lines before and after the platelets.  Now how hard would that have been for Michele to do?  Perhaps she’s having a bad day or perhaps my questions are making it worse.  Or perhaps she’s over worked if paperwork, which is what she was doing, counts.

David is sleeping when the ding, ding, ding goes off.  The machine has shut down but the platelets are not all infused.  I go out into the hall.  No one is anywhere.  I come back in, buzz the nurse.  Go to the bathroom to get the urinal jug for David and when I come out, Michelle is setting the machine for another 11 minutes.

If all this is an effort to make at least me look forward to a Saturday discharge, it’s working.  I hope he is well enough to leave here.  The change in staff from Dr. Alsina to Dr. Perez, from Mark Honor to Mike, and the huge variation in nursing staff is wearing on me if not on David.  There is some very good medical care here at Moffitt but there are some attitudes of superiority that do not belong here.   Frankly I don’t care if he is less sick than anyone else on the floor.  His problems need to be taken seriously however small they seem to the staff and they need to be patient as he tries to respond to their questions and not assume they know how he feels.   Without exception, nearly everyone who talks to him today seems in a hurry and cannot wait for him to get all the words he’s trying to say out of his mouth.

 

Michelle comes back in and mumbles something about what she is doing. Is that her version of “be sure to tell the patient what you are doing”??  SPEAK UP WOMAN I want to yell at her.   I’m clearly going to need all that ice cream and candy comfort food.   When I am stressed my craving for sweets shoots sky high.  I think to myself “you’d be better off if your comfort food was macaroni and cheese or some other high starch rather than high sugars.”

 

 

Thinking of “snacks”, I notice the peanuts still on his tray.  They have been there since he got them from the cute snack cart girl on Monday.   Carrie, and others who know David well, will see this and  understand even more clearly how badly he feels.  Otherwise, peanuts would never sit for 3 days now uneaten. 

 

It is almost noon and he has not been up at all today other than to move from sleeping on the sofa to lying on the bed and sleeping.  Each time someone comes in, I ask him if he’d like some water.  He says “not right now”.  And each time they leave he asks for the urinal.  He clearly has the strong urges with little result.

 

As lunch delivery time approaches,  he does get out of bed and move with the machine to his chair for the first time today.  He sits.  When I ask him what he’s thinking about, he says “that I should be doing something.”   So he takes up the kitchen menu for tomorrow and fills it out.   The kitchen has a nice variety of food and the food service person brings him both the regular and vegetarian menus each day.  He likes to have them both since there are often more side vegetable choices on the regular menu than on the vegetarian.  Vegetarian lasagna, veggie burger and black beans and rice are the routine entree choices for vegetarians.   There is also an ‘add on menu’ with pizza, burgers, shakes, fries and other “fast food” sorts of things.  He hasn’t used that much if at all.

 

Michelle comes in to give him some lasix which has been ordered.  that is a surprise and we ask what it is for.  She says to speed up urination.  He’s going every 5 minutes as it is AND they are giving him saline.  This makes no sense. She says she doesn’t understand it either so she will check to see why Humorous Mike ordered it.  My irritation level lowers slightly.

 

She comes back to report that apparently Mike heard some crackling in David’s lungs, or thinks he did.  Is this when he woke David up this morning?  Michelle checks herself and says she’d call them clear.  I ask if we can opt out and she says it’s only a small amount and she wouldn’t.  So what do you do then?  David, of course, wants to be cooperative so the lasix is given.

By now it is nearly 1:00 and his lunch is delivered.  They’ve somehow gotten his request wrong for the first time in 12 days.  But we give them a pass since they have been so good.  Meals 3 times a day, always hot and from a nicely varied menu.  For hospital food, I’d give Moffitt high marks.  

 

He eats a good amount and while he’s working on his meal the Physical Therapist comes in and says she’ll come back later.  After eating, he goes back to sleep.  15 minutes later in comes Michelle with his neupogen shot.  She can not get the medical accounting system wand to work.

So after fiddling and restarting it and beeping,  she double checks the order and the dose, gives it to him and takes the offending machine off to IT to see what’s up with it.  This is a subQ shot.  It cannot go in through the central line.  So once a day since Monday he has again been getting stuck.

 

Let’s see now.  So far today he’s had potassium, an antibiotic, a saline drip, a platelet transfusion, lasix, and now neupogen. 

 

He goes back to sleep in his chair.   Fadila comes in to change his bed linens.  While she does, I check my email to post the comments on yesterday’s blog.  After Almond Joy, it is the most cheerful thing of my day. 

 

Thank you all so much for the time and interest you take to let us know you are following along.  His majesty Duke (remember his picture from yesterday) actually left a comment.  Now this is something even Scamper, my absolute smartest and cleverest and sneakiest beagle of all time could not do.  I don’t think.  But then I didn’t have a blog then so she didn’t really have a chance.  Who knows?  But Duke, you make me laugh out loud.  I know David will love this when he feels well enough to read the comments or to have them read aloud to him.  

 

 

The lasix is working over time and wakes him up.  Fadila comes in with his mail.  It is a card from our wonderful neighbors Bob and Nancy whom we know follow the blog but do not comment.  Many many thanks Bob and Nancy!! 

This is literally the best thing to happen for him all day so far and it cheers him up to the point that while I’m talking to my father on the phone to remind him that I’ve set up his transportation to the VA for a blood draw for tomorrow, David puts on his shoes and it’s clear he’s going for a walk.   I tell my dad it is time for a walk and say good by.  

 

The physical therapist comes back while we are walking.  She joins us and asks how he is feeling. “Like I have tired blood” is his response.   After a couple  of laps, she puts another one of those little finger things on his index finger to see about his pulse and the % of oxygen in his blood.   111 and 99.   She calls him a rock star. Wonder what Mick Jagger would think of that?   Isn’t he 69 sometime this month?  What these old men don’t do!

 

David wants to finish the walk and tells her I will help him with his PT exercises so she doesn’t have to come back again.   He’s been dropped back from the “hard” version done while holding on to the bed to the “moderate” version done sitting in a chair.   After 4 laps walking he comes back and sits in his chair, sleeping sitting up as in “church pose”.  I suggest he might sleep better if reclined and he says he’s been thinking about it.

 

 

About 4:00 he wakes up to use the bathroom and then we do the three moderate PT exercises.  Just as he finishes,  the pharmacist comes in to go over his discharge medications.  I wonder if it has even occurred to these folks that when the patient is feeling his worst is not the time to do all these discharge things.  As she is going over his medications, Fadila comes in to do his vital signs again.  And the phone rings, his brother Roger is calling.  I answer and explain the situation to Roger.  David will call him back if he can stay awake and people stop bothering him.  Roger understands.  The pharmacist leaves, Fadila takes over and then Michelle comes in to take 2 vials of blood to check his platelets and electrolytes.

 

Finally the rush seems over and he wants to try the spirometer.  We agree that this time he will only do 5 at a time rather than all 10 since each one makes him a bit dizzy.  Last night he was exhausted and his teeth were chattering after doing 10 in a row.  He is able to get to at least 1700 each time and once to 2250.  But after 5 he is tired and cold so he lies back in his recliner with a pillow for warmth.  I suggest that I’ll get his blanket from his bed but he says no.   He wants to “get up in a little bit and do another walk” at 5:00 before his dinner comes.

I’m amazed that he is doing all these things after such a difficult morning and being as exhausted as he obviously is.  If this transplant doesn’t turn out to have a fabulous result, it won’t be for lack of effort his part to do everything asked of him.  I wonder how I would fare in his place.

 

 

As I watch him sleep, I remember that unfortunately this transplant is not a cure.  Multiple Myeloma is a cancer for which there is no cure.  He will not “get over this” and back to his “normal” life.  There is now a totally new normal that will always include blood work and doctors every month.  This stem cell transplant, everything he is going through now and all the months of treatment leading up to it will hopefully give him a few years in remission before the disease returns.  No one as yet has been cured of the Multiple Myeloma and some have had multiple transplants.  Many people have 3 or 4 good years of life in remission, some have even more.  Some have transplants that don’t work at all like Pat Killingsworth who wrote the book about Multiple Myeloma Stem Cell Transplants.  Some are on drugs for follow up, some are not.  But all are tied to the medical system forever after, most taking medicines daily and all getting weekly/monthly/quarterly blood draws and treatments depending on their current situations.   Whether David will ever be able to travel full time in an RV with complete freedom and away from his specific hematologist is unknown.  His hope is that he can have a good enough quality of life and that better treatments/drugs or even a cure may arrive while he is in remission.

 

It’s just after 5:00 when Michelle comes in and announces that his platelet count is up from 6 to 36 due to the transfusion but she doesn’t have the electrolyte count yet.  Since he is now awake, I ask David if he wants to get up and he says “how about 5:15”.  “You got it”, I tell him and he goes back to sleep. At about 5:30 we set out for the 2nd walk.  After 2 laps he’s very cold so we come back and get him a third shirt and that hat he had me bring for his head.  He looks like he’s out for a walk in early winter.

 

 

They bring his dinner just as we return, he’s eating it well, everything is fine and then says he’s too hot.  Shortly after that he vomits.  Michele brings him another shot of zofran but it’s clear he may have to switch to a different anti-nausea medication. 

After resting a while, he tries his dinner dinner again and is able to eat the remainder including a small bit of carrot cake.  He ends the evening by undertaking a shower.   This is a BIG deal and takes quite a long time when you have the central line and dressing that you have to keep dry.  We finally get his hair washed and get him into clean pajamas to go with his nice clean sheets but he’s exhausted.  It’s nearly dark when I leave him resting in his chair before brushing his teeth.

He doesn’t do the last walk or the other 5 on the spirometer but he’s done as much as he can and that’s good enough.  Now that his platelets are moving up, we are hoping the rest of his numbers will begin to make bigger climbs and these numerous side effects will decrease.  Tomorrow is another day in which that could happen.