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

Henry David Thoreau

Ups, downs, blasted

Saturday July 14, 2012
Quail Run Lot 15
Wesley Chapel, FL


The best thing of the day happened when I checked the mail.

The mail man left me a note in my mailbox that read: You have a package at the office. Okey dokey then. Off I go with my little card. The very nice lady behind the counter with whom I have talked 3 times and STILL haven’t asked her name, brought me not one but two packages. One I was expecting. She says “one is your mail and one is from The Good Luck Ducks????” You can tell she’s dying to know who are they and what’s in the box.

HA! I say, those ducks again.
She thinks I’m crazy.
You see those Ducks are the Godmothers (just appointed unbeknownst to them) to Moby and Handy. Just last week these same Ducks sent Roxianne here to keep Moby and Handy in line. Click here to see her picture. I picked her up in this very same spot. And today, well just look at this.

You see I, for THE FIRST time in my ENTIRE life, won a prize. Luckily I didn’t have to do anything to win it like sing or dance, The results would surely have been different.. All I had to do was enter and lo and behold I was the winner of two boxes of Space Bags. And today they showed up in my mail.


space bags 026

This day is a mix of ups and downs.  But let me prepare you, this package the best thing that happened all day so I am sending a giant THANK YOU out to those Ducks for arranging the delivery on this very day and bringing some cheer to this July 14 Saturday. 


RIP Dell Latitude

space bags 005


On to one of the downs.  David’s 5 hour fix didn’t hold and the computer is caput, done, finished, no more can repair. Just THE DAY he needs it most for keeping him occupied as he checks into the hospital for an undetermined number of days where he cannot leave the floor let alone the building.





Sure doesn’t pay to save even a little.

This followed our being informed that because we haven’t used up all of our savings, we do not qualify for financial aid for the temporary housing we will need for 10 days to 2 weeks following his discharge. $100 a night. OUCH! Rather a blow to the wallet these things.  Seems the rich can afford whatever they want, there is financial aid for the poor but if you are in the middle class well, no one is going to help you not become one of the poor.


A Good thing is a visit from the local long legged folks who came right over to the campsite and checked out both Winnona and Ruby as I returned from the mail run.


And then there is a pretty good thing. When we show up for admission, David is assigned to a room in the “new wing”. Or at least we think this is good. Or is that just the cultural assumption that anything new is better than anything old. Now that I think of it, we have an old farmhouse not a new house, we buy used cars, used RVs, used dollys, even used books. Maybe I’d better rethink this “new” assumption.


His new digs are room 3715 Moffitt Cancer Center.

We got him fairly well settled in. He does have a window but all he can see from his bed is the wall of the building next door unless he stands up at the window and looks down. I think the views are in rooms 3709 and 3711. Thou shalt not covet thy neighbor’s window.


hospital 011

Ok now for the other not so fine parts of this day.

They would not be doing the high dose chemo BLAST until 10pm. So we had asked and initially been told that after he got his things into the room we could go out for one Last Supper. That was by the Saturday nurse. We probably should not have trusted her knowledge given that she didn’t know the phone number was written on a huge white board in the room and spent some time trying to figure out the number. She couldn’t figure out how to turn the TV on, seemed to be reading from a script and in general didn’t seem to know what was going on the way someone who had worked here 3 years as she claimed she had should have known.

Anyway, when we mention our plan to someone else on staff they drop jawed and tell us that isn’t possible. Apparently, like prison, once you are “admitted”, there is no going anywhere off the floor until you are “paroled discharged”. So I start hunting for the take out restaurant that will have to stand in for a last get away.

I think I’d found it. He wants, of course, more junk food namely a burger and fries.  I haven’t yet read him Page’s comment on yesterday’s blog. Note to Page: I’ve tried to find a way to contact you with no luck. Drop me an email to RVDreamlife@gmail.com. I want to find out more about what you saw.


Ok so I think I’ve found a pretty fine compromise between what he wants and what he “should” have.

It’s Evos.  Click the link to see what they have to offer and if there is one near you. Evos had a location just down the street from the hospital. They advertise “our steakburger is made with naturally humanely raised beef without the added hormones and antibiotics.  They airbake instead of deep fry their fries and have a selection of fruit shakes like mango guava or milk shakes made with organic milk. 

I go out to the the parking garage, find my way to the shopping center with their name on the sign by the street and drive around and around passing an Indian Restaurant, A Japanese Restaurant, A Chinese Restaurant (I’m not kidding here) a deli, Appleby’s, another branch of First Watch of yesterday breakfast fame and Five Guys. Finally I roll down my window and ask a woman crossing the parking lot

“Can you tell me where Evos is”?
“Well it used to be right next to the Dollar Tree, but it’s not there any more”.

Ahhhh no wonder I can’t find it. I check to see where another one might be. 20 miles away on the other side of Tampa. SIGH!  I call the patient with the bad news.

Well just bring me 5 Guys.
Things are going from bad to worse.  He must be desperate since he really does not like 5 Guys. I remind him of this.
He replies, Well maybe they are different here, we’ll give them one more chance.

I order, I wait, and think
David was a burger affectionate in his previous life. He isn’t going to really like this.
My order is ready, I have to hold the bag away from my clothing since I don’t want those oil stain from the brown paper bag on my clothes.

Cut to the chase, it was an OK burger on a terrible ordinary white air bread bun, and there were a lot of OK fries. We can’t figure out how does this chain have “best burger” signs plastered all over the inside of its store from numerous newspapers up and down the southeast coast?

No pictures of us eating the food with the greasy bag right next to us. Why not? Well truthfully I forgot to take one. But this really wasn’t a meal to remember. I’m sure you can imagine it. Or maybe you like Five Guys.

Today is known as DAY minus 2 or Day –2.

Notice the beverage is not beer and check out those no slip sox.hospital 016

This is the day or rather the night they blast him full of a high dose chemotherapy agent called Melphalan. The infusion lasts an hour and over the next week will kill pretty much everything sending his white blood count, his hemoglobin count, and his platelet count all down to zero before they begin to recover. These are going to be a very hard 10 days or so. We are both frightened.

There are many possible side effects to this high dose chemotherapy. Most will not show up tomorrow but increasingly over the days and weeks to come. But one that may show up sooner is mucositis – mouth sores – well actually they can be sores all up and down the GI tract. This makes it very difficult to eat even if you still have taste buds or the desire to eat. It is strongly suggested that you suck on ice before/during and after the infusion.

I wonder why in the world they give this stuff at 10PM if they want him to suck on ice before/during and AFTER.  It will be 11:00 at night AFTER.  He’ll be tired. Why not 10 AM so he can suck on ice all day long. But this is their protocol.

He is and has been told by multiple people that infusion will happen at 10pm. He starts sucking on ice at 9:45. It’s 10:15, 10:30, 10:45.  They don’t show up to begin doing it until 11PM.   Are you kidding?   This is a hospital with orders for specific times.   No one has come to say there is any delay.  No one has come to say anything. 

No patient should have to sit for an hour waiting for a killer drug he has been worrying about for weeks.  In my opinion, this is not compassionate and is in fact cruel.

For the first time, I’m beginning to wonder about Moffitt. First the nurse who doesn’t seem to know what’s going on and now the orders that the pharmacy can’t fill on time?

He sucks ice for an hour before the treatment starts rather than an hour afterwards which would be much better but he is too tired at that point to suck on ice. I am NOT a happy camper about this.  The poor charge nurse takes the brunt of my demand to have this explained.  Why was the drug so late and why was he not told it would be.  He was left to wonder and worry about this huge effect on his life.


So how does the day stack up over all??

On the hero side are the Ducks and the space bags, the Sandhill Cranes and MAYBE the room in the new wing.

On the Villain side are the laptop which died just when he needs it most, the dispensers of financial aid for deciding that you must use up all of your savings before they will help you when the reason you want help is so you don’t have to use up all of your savings.   Then there are the hospital rules forbidding a last supper off grounds, Evos for moving, 5 Guys for being convenient but not worthy of the praise they receive,

The pharmacy  or staff at Moffitt, whoever are responsible for the delay in this HORRIBLE procedure qualify as major villains but the grand daddy of them all is Multiple Myeloma for making this Melphalan blast and all the rest necessary.

Taken at about 7:00 pmhospital 019

Tomorrow begins life as he and we have never known it before.


  1. This day forward must be frightening for you both. For David to not have his laptop...a source of comfort is terrible! I hope this process is not to hard on him.

  2. I wish the "heroes" of this day were mightier than those villains! Sigh.

    So, does your mail-receiving address stay the same, or is your new "home" where things should be sent?

    1. Your strength, courage, and love are inspiring. May the days ahead bring you great news about David's recovery. You are in a tough stretch now, but each day brings you closer to the time when you two are back "in the direction of your dreams."

  3. Whew, what a day! I'm sorry it was so hard.

    Yay for timely space bags! I've never been a godmother before. I'm honored. :0)

    In my carnivorous days, I loved Five Guys. Also McDonald's, Wendy's, and Carls Jr. so you can see how cheap my tastebuds are.

    Thinking of you both.

  4. Sherry, I just sent you an email.

    The 5 Guys by us has a fairly tasty veggie burger. I think I have would gone Chinese and gotten steamed vegetables with the sauce on the side.

    Quickly jump up on my soapbox - animals may be "humanely" raised, but there is no way to "humanely" kill them. Watch "Earthlings."
    Quickly get off soapbox.

    I know this is a terrifying time for both of you. I can empathize completely, having been through major medical problems with both of my parents.

    Take deep breaths, think peaceful thoughts (if you can) and please be well!

  5. We love burgers and hate 5 guys. Thanks for the update. Our thoughts are with you.

  6. Thinking of you both and wishing you well. Glad there were some high points in your day!!

  7. I pray side effects are 'low key' and that things go as planned and on 'time' from here on....you are in our thoughts and prayers Sherry and David....we will be watching for updates...

  8. My heart bleeds for you. Prayers that these next days are not as bleak as they seem to be. (((HUGS)))

  9. We went through a similar experience when Doyle had an abdominal aorta aneurysm two years ago on the Eve of our moving out of the house and going on the road full time. I quickly became an expert of Hospital Etiquette and sleeping on couches in visitor lounges.

    My heart goes out to you both as you take on one of the most daunting challenges that life has to offer, dealing with Hospital Staff. I wish you a better experience to come, there are roses among the thorns and generally hospitals may be short on personality but they are very good at making you better.

    You might find the Hospital has it's own cafe, (somewhere in the basement usually) that has excellent food and the best coffee can be had by bribing the Nursing Staff with any sort of bakery, they will then let you at their own pot.

    I hope your Husband comes through this with flying colors and can be done with this torturous process. Our Prayers are with you and we wish you all the very best. Remember to get good rest yourself, (if at all humanly possible), and be your own Advocate, don't be afraid to stand up to them when they are about to do something wrong....

    Psssst...I hate to say it but you really must learn to hide your wealth better, what little of it there is....what isn't documented cant be counted. I feel no shame in saying this when politicians do it all of the time....God Bless you Both!

  10. Sherry, I am so angry for you. Where is the compassion? The lazy, incompetent people would not be very happy if they were treated the way David was treated. My brother-in-law had mucositis as a side effect, and his doctors had him swishing pepto bismol which helped to a degree. Maybe they have a better drug or you could ask about pepto.

    You're right. It seems that only the very poor or the very rich have a chance in this country. It's a sign of the times. :(

    I'm with you and David. After hearing all the raving about 5 Guys, I couldn't wait to have one. Ugh...their meat isn't fresh and neither is the "grease" they fry them in.

    Lousy luck about David's laptop. I'm sure it would have made the time go by quicker if he had something to keep his mind busy.

    I'm so sorry this day was a downer after the initial good news, but I'm hoping the good numbers will help David in the long run.

    Hopefully, you can keep in touch. We're all out here rooting for you.

  11. I am humbled hearing the day to day of your story. Prayers going up.

  12. My heart goes out to both of you. Good luck handling the hospital staff there are always a few good ones who care and a lot who are burned out and this is only a job for them and they can't understand why you are upset.

    Our prayers are with you both. Take care!

  13. Yes, maybe time to pass stuff to the child. Somehow. oh oh Sherry...so incredibly hard. I have to admire David for his courage, and you as well. I could never do it. Incredible courage he has to go through all this. I hope there are a few more good things among the hard ones for you. Words just seem so dang empty but the caring is there behind them.

  14. Well, I just tried to post a long comment. Spent some time writing it and then blogger chose not to let it post?!?! So I will just say, we have been thinking about you two all day. Thanks for the update. Sherry you are a great advocate for David. He needs someone to be sure he doesn't get lost in the hospital shuffle when he is in no condition to stick up for himself. Hugs to you both... well maybe not David right now as we don't want to give him any germs;o))

  15. You are both in our thoughts. Praying that all goes well and that before too long you'll be looking back and be amazed at the journey.

  16. We tried 5 Guys about a year ago after hearing all the raves. We were very disappointed. We thought it might have been the location and would have given them another chance until now. I'm so glad we're not the only ones thinking they are over-rated.
    Hugs and best wishes as you enter this new phase.

  17. Thoughts and prayers are with you both. Sending you lots of healing energy along with best wishes for a successful transplant and speedy recovery

  18. You would make a fabulous advocate for anybody...Your dogged persistence on getting help for David is greatly admired...Wish someone could "loan" David a laptop! Wonder if there's anywhere where you can buy a refurbished used one? Sending virtual hugs...

  19. David's room looks pretty nice compared to most hospital rooms I've seen. He even has a recliner and a desk. Maybe you could catch a nap once in a while when you're waiting.

    Glad you got him a new laptop. He looks like he's enjoying it!

  20. Sherry and David - Sending more warm thoughts and lots of prayers your way. I do hope that the after-care at the hospital is much more compassionate than the pre-care. :-)
    You know that Dan and I prefer to cook and eat at home...nothing else usually compares! But I can totally understand David wanting junk food. ;-)

  21. Thinking of you both and keeping you in our thoughts and prayers!! Sorry for the down parts but grateful for the high parts of the day/week. Hugs!!

  22. Hoping for a good day today and from here on out. You're now in the thick of things and making progress. It will seem slow, but each day brings you closer to getting out of there and back on the road!

  23. David's and your name were spoken every day at the beach.... we were in constant thought about the two of you and the difficult challenges. I felt like I was leading up to THE day too - the terrible day when they gave him the Melphalan. Guess this is the lowest point, and I am so very, very hopeful that those blood cells will get busy and produce lots of additional healthy ones. Life is "sucky" as some of the young generation would say... and I have to admit... that in your cases this is oh so true. Hope David somehow enjoyed his last "meal" before the big chemo..... It is wonderful that you are a voice for David as he goes through this difficult challenge. I know it is not easy on you. We send love, and hugs, and encouragement, and prayers.... and smiles to hopefully brighten the day just a little bit.

  24. Hi Sherry and David,

    I just wanted to drop you a quick note and let you know that I will pray for you guys. I know you don't know me, but I'm Bill and Nancy's daughter and my son had a brain tumor(s), surgeries, chemo, radiation, therapies, etc. Reading your blog brings is fresh to my mind like it was just yesterday.

    I have a couple of thoughts that might help you (or you can toss them in the trash) :)
    1. Know exactly what chemos, meds, dosages, infusion rates, transfusions, etc that David is supposed to receive. It's hard to understand it all, but the more you understand about what he's getting and how it's administered the better. If one of the staff does or says something that doesn't line up with what you were told by the doctor, ask questions. I tried to learn everything about Daniel's treatment, and because of that, I caught a couple of mistakes that could have complicated things. You have to be your own advocate!
    2. This piece of advice may be the most helpful I can offer. After we were in treatment for some time, our family dubbed the term "hospital time." We realized that if a procedure or infusion was scheduled for a certain time, what that really meant was that it was ordered and they would get to us eventually. We learned to hold very loosely to clock times. And Daniel was treated at DUKE - a great hospital. Unfortunately, I think this is very common and not necessarily and indicator of poor care.

    Know that I will pray for you two that you will have peace through challenges to come!


  25. Happy for your ups, but sorry for the downs of the day. Regarding David's Last Supper, it's incredibly frustrating to be told one thing by one person only to have it disputed by someone else. Rather unnerving when you're dealing with nurses. Praying that the days ahead have many more ups and that David's side effects are minimal.

  26. First off - cool socks!! And, may I say, your hair looks very flatering in that picture, Mama :) Also, those birds - wow - you'd never see anything like that around here. The room is bigger than I expected - I'm glad it is not just a square, boxed in space - that, I think, would make it even more difficult emotionally. I hope the hospital doesn't always drag on their timing - waiting can be so stressful. Also, I hope the side effects are not terrible - it sounds as though this next week or so will be the very worst - be patient - I just know in my heart that this is the dark before a new dawn. I'm with you in spirit and thank you ever so much again for being strong and advocating for Dad - that means an incredible amount to me. Just like some other commenter said - make sure you do have some time for yourself - going through this sounds thoroughly exhausting. Never forget I love you!!

  27. Ask the doctors about a concoction called "swish and swallow" or a "g. i. cocktail" It includes carafate, Lidocaine, and something else. I forgot the 3rd ingredient. The carafate coats the open areas of the ulcers that form in the Gi tract, and the Lidocaine provides topical relief from pain. The swish part is gargling with the concoction. The timing thing is very common in hospitals. I work in one, and believe me, it is frustrating to me as a nurse to not be able to finish the required treatments as ordered too.

  28. Sherry and David,

    I followed a couple of Ducks over here and just signed up to follow your journey. Having just left hospital after an emergent appendectomy last week and being an 11-year breast cancer survivor, I know so well how entering hospital puts one in a time warp, at best. My heart, thoughts, prayers and Reiki are directed to you both as you walk this difficult path together. How fortunate you are to have one another. Yes, there will be extremely trying times, but there will also be beautiful, joyous moments together. Peace, strength, love and light to you both!

  29. You know I'm not very good with words but you have been in our thoughts and prayers.


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