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

Henry David Thoreau

Part II of David Gets Tested for Transplant

Wednesday June 20, 2012
Lithia Springs Site 25
Lithia Florida

If you haven’t read part I of this exciting drama you will be sure to want to go back and read yesterday’s blog first.  Just go to the bottom of this page and click, “Older Post”.  When you are finished, at the bottom of that post choose “Newer post” and it will bring you right back here.  Read them in order now ya’ heah???

 

Tuesday is a slight modification of Monday.

 

We don’t have to be there until 8:30 instead of 8:00. WOW! Same use of the alarm, same lunch, same drive, same parking, different tests. I should point out that in all these pictures he is wearing his red jacket.  They keep the hospital very cool which I thought was odd given that many of the cancer patients are bald and thin.  But it is because fewer germs and bacteria that can grow in a cool environment.   I’ll put on a jacket for that.

   

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At 8:30 we are in the Nuclear Medicine Lab. Don’t even ask me what’s happening here. He’s having a MUGA. It’s a heart thing. David can tell you more than you’d want to know but you don’t want to let me give him the keyboard, trust me. It’s something about putting a radioactive marker in his blood so they can then see with computer imaging software to measure the % of the blood taken in to the heart that is ejected in each beat.

Anyway, we’re here, he goes in and registers. And then we wait. And then they call him and give him an arm band and then we wait and then they call him and make sure he’s who he says he is and knows his own birth date. And then they take some blood. And then they put some radioactive thing in the blood. And then he comes back and we wait for it to do whatever it is going to do and in about 20 minutes they call him.  Check to make sure he is who he claims to be and knows his own birth date.  They take him away, give him the blood back and put him in a machine while they take a look on their screen. The results will be available at the next appointment.  On we go.

 

We head back to the BMT Clinic to meet with the PA.

 

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David checks in and we wait and……….well by this time you know how it goes. We don’t see the star this time.  Maybe she has Tuesdays off.  Too bad!  At 11:00 we go in to meet with his Bone Marrow Doctor Melissa Alsina’s Physician’s assistant. His name is Mark Honor.

Mark just wants to check up on David since the last appointment he had with Dr. Alsina which was eons ago it seems. Have you had any illnesses or problems?? Everything going alright? He looks at the tests on his computer screen says David has passed them all so far. We ask him some questions about the genetic abnormalities.

We get an idea of the timeline for the transplant and post transplant. Usually a week-10 days in the hospital, a week-10 days as a daily out patient in housing only minutes from the BMT Clinic , and then 2 weeks no further than 30 minutes from the hospital.  If all goes well he will then be released to go “home”. Now where is that I wonder??

Mark, like most of the doctors, nurses and assistants we have encountered is on a schedule. He’s friendly and open, easy going, very forthcoming  and then his pager goes off. No doubt letting him know that he needs to move on and he does just that. Any last questions? Nope. We’ll see you at transplant. Take care.

I’m impressed that they spend 20 and sometimes more minutes with each patient.  They do in excess of 150 Bone Marrow Transplants a year so they see a lot of folks.

 

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Then it’s back to the BMT waiting room. We are already totally familiar with this place and it will become a place we fear we may get mighty tired of. But it is a place where we learn perhaps more from others who are preparing to or have undergone a transplant and are also waiting for some appointment. So in that sense the waiting is a good thing.  But today we decide to seek out another spot for lunch. 

We go down to the Starbuck’s coffee shop on the first floor.  Same lunch, different restaurant.  Like same house different yard.

 

Last item on the agenda for today is the THREE HOUR transplant class.  

The receptionist at the BMT clinic says they’ve run out of maps so we try to remember and follow her verbal directions to a total different section of the hospital where the class is being held in a conference room.

 

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On the way we see a couple of great volunteers.  Notice their ID badges.  Abby and Tiffany come on Tuesdays to bring smiles to the faces of the people whose lives are devastated by cancer.  They definitely succeed!!     Yesterday it was the BMT nurse today it is Tiffany and Abby who get us smiling.  Tiffany is a west highland terrier and I could have snatched her right up and taken her away. She is really giving my beagle devotion a run for its money.  Especially when her mom tells me she has hair not fur and thus doesn’t shed or cause allergic reactions. Abby is also a darling but she is a bigger dog than I usually like to own.  They are SO cute David has to pull me away.  We are late. More points for Moffitt in my book.

 

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We find the right elevator.  We have now been up and down all three elevators A, B and now C.

We wander around, ask people we see, pass a musician playing for patients – it’s called music therapy and you can request it any time you want.  Local musicians volunteer. Another high mark for Moffitt!   He is playing classical guitar and sounds very good but I don’t even have time to get a picture.  We are late.  Blame it on those cute volunteers who waylaid us. 

We get there and the class has started.  But there are 6 other people who come in later than we do.  I think they need maps AND signs here.   Or perhaps those volunteers side tracked us all.

 

It’s a long class entitled “All you need to know about Transplant”.

 

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Everyone in the room is either having a transplant or is the caregiver for someone having a transplant.   There are multiple parts to this class.  The longest section, about 90 minutes, is entitled nursing education where one of the transplant nurses goes through what is a bone marrow transplant, what is a stem cell, what is an autologous transplant, what is an allogeneic transplant and how each of them works step by step.  Pretty graphic.  They cover all the possible side effects.  Fear of infections.  What to bring with you.  What not to bring.  Daily routine.  Who can visit.  What happens when you are discharged to outpatient. How long you must stay in local housing  - meaning 10 minutes away.   What then.

 

Next comes the case Management Person who seems to run interference between the insurance companies, including Medicare, and the hospital personnel, she is followed by dietary education – what can you eat, what can’t you eat and how must everything be cooked and washed and washed and washed.  No carryout.  No delivery.  No self serve.  No buffets.   If you didn’t make it and it isn’t well done, you can’t eat it pretty much sums it up.

 

Next is the inpatient social worker for whom I felt rather sorry since everyone seemed to have the same questionable experience with the same questionable outpatient social worker I mentioned yesterday.  This lovely lady tried very hard and stayed after to get everyone’s questions and concerns, especially about outpatient housing, answered.   She got materials we should have been given and tried to make up for the rather slack job done by her colleague.  Most people are from out of the area and some, like us, from out of state since this is a highly regarded transplant center so they will need local housing for up to two months following the inpatient hospital stay.  Not a small task to provide especially in this town which will host the Republican Convention at the end of August.  Lucky us……  I can hardly wait.

 

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Again it is 4:00 when the parking attendant drives up with our car.  We’re hungry when we get back so we have dinner right away.  Later in the evening I make David a strawberry smoothie as his reward for being such an amazingly good patient.  

 

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Looks delicious doesn’t it.  I had a sip and it was.

 

FINALLY, it is Wednesday and the last trip to Moffitt for this week.

There is only one appointment today but it’s a doozy.  He has to have his second Bone Marrow Biopsy.  BUT the appointment isn’t until 9:30.  WOW!

So I get up at 6:30 to run before the heat sets in and so that I will have time to do all my stretching, exercises, take a shower and have breakfast.

  Sadly for David his instructions are no food or drink after midnight.  He’s starving when we set out for the drive to Moffitt. He probably won’t be able to eat until noon.

 

They’ve trained us very well.  We know the routine by now. 

This time we are in the surgery clinic.  Same intake as always.  They take him away for the anesthesia.   I wait.   This procedure takes a while since they are going to go into the bone marrow in his hip with a very large needle which then sucks out (aspirates) a sample to check for myeloma. This is the second time he’s had a biopsy of this type.  The first was what made his diagnosis absolutely certain back in February.  This sample was a 20 ml sample.   Sounds SO AWFUL!!

 

Then and now he’ll get a pathology report from this sample which tells us more than we understand.  They do cytology, morphology, cytogenetics, and a FISH  analysis on this sample. For those like me who really hate acronyms FISH stands for Fluorescent In Situ Hybridization.  That sure clears it up doesn’t it??  The name means nothing to me but it enables us to see pictures of the chromosomes showing the abnormalities present in his myeloma cells.  Most important is the percentage of the cells in the marrow that are myeloma cells.  After all this treatment, we want to see the percentage be WAY down, as close to zero as possible, before starting the transplant.  

 

When he was diagnosed back in February, his percentage was 75 that’s HUGE and  why it was so amazing he had no symptoms and why they were in a real rush to get treatment started.   That was a diagnosis biopsy which will be compared with this one to see the full effect of the treatment he has undergone these last months. 

This one is a post treatment and pre transplant measure.   After the transplant they will do another biopsy in 30 and then in 90 days for comparison with the previous two.  He is going to have a lot of scars on his tiny hiney.

 

The best part of this procedure is that he is sedated for it. 

When they call me into the recovery room 90 minutes later to see him, his first comment is that he knows why Michael Jackson liked that sleep medicine.  This is what they gave him and he says it was the best sleep he’s had in 6 months.  Too bad it was only about half an hour.  I didn’t think to take a picture of him all hooked up to IVs and with tubes in his nose and patches on his back.  Probably would have scared Carrie anyway.

 

Time for food FINALLY!

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David is having some stomach troubles due to these medications he’s been taking and it works much better for him to have food in his stomach most of the time.  So he’s anxious to eat.

He slowly gets dressed and we make our way downstairs to find a spot to have our lunch.  It is noon, real lunch time, and all the tables are taken so we go outside to the  Garden of Hope.

 

 

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The Moffitt campus really is beautiful inside and out.  If a hospital could be said to be beautiful.    What a nice spot for our lunch.  The garden is sunken.  That fact and the  fountain drown out any extraneous noise or chatting from the outside tables of the hospital cafeteria behind it.  A very nice place for lunch or contemplation.

 

 

 

 

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This group of little girls have a wonderful time throwing pennies into the fountain.  Finally their mother has to admit she doesn’t have any more change.  Shortly after there are no more pennies or nickels, they leave us and we have this lovely spot all to ourselves.

 

 

 

 

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Just as we finish our lunch it begins to rain so we quickly scurry around to the very nice outdoor cafeteria tables and back into the hospital.  We return  to the main lobby to access the Gold Valet parking and pick up the car.

 

 

 

 

Guess who we run into on our way through the lobby?

 

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It’s today’s happy volunteers bringing cheer to everyone they meet.

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Once we are in the car, David is immediately making plans for what to do next now that we are free and it is only 1:00.  He thinks he’d like to go take a look at the long term stay hotel.  He’d like to go to the grocery, of course.  

I think, he’s just had a surgical procedure and I’d better suggest that we limit it to one of the two.  I know he’s going to crash after all this medication wears off.  

He chooses Whole Foods, of course.  I drive us over and make it as short a grocery trip as I can but just as I thought, he lays back and naps on the way home and retires to the bedroom for an even longer one as soon as we are back.  He’s exhausted.

All the hospital visits are over for this week although there are still more appointments of other types for Thursday and Friday.   We haven’t had time to move over into site 40 even though it’s open.  I doubt that we will.  Too many other things on our plate.

29 comments:

  1. That little Westie is wearing her hair in a Moby. I love when dogs and babies do that.

    That smoothie looks like it's kale-free. I want it.

    Do you know if David's transplant will be autologous?

    And, you actually got to see the entire chromosome, all condensed 'n' stuff? As I recall, there's a probe designed that should hybridize with a particular spot on the chromosome. I've never done it, though.

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  2. Wow. Just wow. All I can say is what I told the Sharon--you're doing a very big service to people who read your blog, Sherry. Fear of the unknown, in my experience, is worse than knowing what you face and that what they are doing is normal.

    I found myself feeling as though I was right there with you--you have suck a knack for relating your feelings. David is such a trooper. You are such a rock.

    Are you in site 24 or 25? I'm pretty sure it's 25 unless you changed from yesterday. Never know if someone reading is in the park and wants to see if there's anything they can do for you or just say hello.

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  3. I hear David on that anesthesia sleep. Both Mui and I've been given the same for our colonoscopy procedures... and the sleep is indeed the best. You just really conk out within seconds of it being administered.

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  4. What a blessing to have anesthesia for the aspirations! All Gary ever got was a topical, and although he said it didn't hurt a lot, it is probably better not to run the risk of a patient doing any squirming during the procedure.

    You don't mention the stem cell collection procedure. I'm wondering if David's transplant is autologous.

    You are right to focus on food, especially for after the transplant. David will need every ounce of food that you can get into him - and that won't be easy - during his hospital stay. Gary didn't eat at all for the three-week hospital stay, and lost 15 pounds.

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  5. I'm with hobopals, wow. Thanks so much for sharing your days with us. I hope that blogging about all this isn't an added burden for you, and that knowing there are lots of us out here who care and are pulling for you guys helps just a wee smidge. I look for you on our blogroll every day.

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  6. I believe that Tiffany is the cutest dog I have ever seen! Too bad she is not allowed to visit patients in the hospital & I won't be allowed out of the ward to visit her. I never knew some dogs had hair, not fur. Amazing the things you can learn in a day, no matter your age or your education.

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    1. I love Tiffany too. She is indeed a cutie.

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  7. whew! it is amazing that you can manage to write this whole story, Sherry. I too was so glad to hear that at least David got some anesthesia for the procedures. ugh. My words seem so dang thin, but the caring behind them is not.

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  8. I'm exhausted for you just after reading what all you two went through. What a welcomed ray of sunshine Tiffany, Abby, and all the other dog volunteers must be to the patients, family, and friends at the Center. David definitely deserved that "cheer-me-up" trip to Whole Foods. Prayers continuing.

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  9. I concur, i am exhausted the last couple days just reading about all the things you two have had to do. Whole Foods sounds like a really good distraction, he does like going there doesn't he? :) Smoothie looked GOOD!!!
    Lots of caring for both of you and thinking of you lots.
    Take Care & God Bless

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  10. We're exhausted just catching up with you. Can't imagine how worn out you two must be. Waiting around can be tiring too, but it's great to strike up a conversation with others there. Hang in there and know that you both are in our thoughts and prayers. Love ya...
    Syl and Gin

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  11. Sherry, you are showing so many of us that one can do what one must do. I applaud you for your courage and ability to write of your experiences. I love the doggie volunteers! Its nice to know that such a good cancer care center is nearby should anyone in my family have need of one.

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  12. I think I'm just speechless. What an ordeal.

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  13. It was very nice of you to make David that smoothie...and to take him to Whole Foods! That shows how much you love him...especially the Whole Foods part :)

    Tiffany was one of the cutest dogs I've ever seen. She almost looked like a teddy bear!

    Thoughts are with you everyday...hang in there.

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  14. Wow. What a learning curve.
    Good of you to put it all here for everyone.
    Sure hope everything works out.
    Everything crossed!

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  15. I agree with Bob - Everything crossed.
    I know it's hard, but stay strong.

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  16. You all had a couple of hectic days. When will you know what David's numbers were from the Bone Marrow biopsy? Hopefully the GOP will only invade downtown Tampa and you will be able to avoid them. It is nice that Moffitt has that peaceful garden for quiet and reflection. You are in our thoughts :)

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  17. I am amazed how well you remember and document the entire day.

    Hopefully Davids numbers will be down when he gets the results back. You are both handling it all so well. (or at least you're faking it quite well)

    Hang in there.

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  18. Well.....truth be told - I didn't follow the directions and read them in order as you might have noticed since in my comment to the previous blog, I referred to some of this blog. I read them both before commenting. Oh well. The dogs are great! I thought about whether Lila and Sydney could be "therapy" cats. Don't think so...dogs really are perfect for that role. Too bad Dad will not be able to be anywhere near any animal (other than human) during and after the transplant at least for a time.

    Re Dad: Tiffany is not the cutest dog ever, in fact, all our beagles are/were the cutest dogs ever ;)

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  19. You are doing a wonderful job of reporting. This is so helpful to anyone who might have to go through the procedure. Love the dog photos and the beauty that you are able to find in the hospital setting. Hope David's numbers are where they need to be.

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  20. How Sci-Fi. Gotta love a guy after a MUGA. All that technetium-99m sloshing around... how they emanate such a pleasant soft green glow.. How they make compass needles spin madly... Oh baby, oh baby.

    Hope you wore your aluminum-foil pajamas (with footies & hoodie) to bed last night.

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  21. You are so good at documenting this ordeal, your posts will help others that are hit with this same challenge. It is not easy, but you are strong and will get David through this. He is blessed to have you at his side, as difficult as it all is, you are making in so much easier for him.

    Wish we could do more, just know we're thinking and praying for you every day.

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  22. Wow, what an ordeal David(you both!)has to go through. I am anxious to see him #'s from this latest check of his marrow. Again, prayers are being sent up for both of you.

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  23. Long, dragging days. Wishing you were somewhere else. On the other hand, you MIGHT be somewhere else that's WORSE!

    Found another Emily. "Luck is not chance, it's toil; fortune's expensive smile is earned."

    We all hope that the prize earned is well worth the price paid!

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  24. Thinking of you both and still sending healing thoughts.

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  25. OMG - what an ordeal!! It looks like Moffitt was a really good choice. Hospitals can be a real downer but it appears the experience at Moffit is about as good as it gets. I can't tell you how much I appreciate all your writing and pictures. It is so good to see pictures of my brother through all of this. It would be nice to have a few pictures of the two of you.

    Every day we think of you and hope that all this effort will yield the desired results.

    With love, Roger

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  26. Wow - how very hectic and surely exhausting both physically and mentally for you both. The dogs sure are cute, aren't they!

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  27. Oh, I'm exhausted, too, just reading this. But you definitely got a smile outta me with the doggie pics :) I think I told you once that we used to have nbors on Mason who trained their big dogs for therapy — he was a psychiatric nurse at UVa. He told me that it's especially important that dogs not be easily startled, because of wheelchairs and bedpans, etc. Oh, well, so much for Madeley ever being a therapy dog :(

    You'd be invited to M's 15th birthday party next weekend if you were here — you and her 35+ closest doggie friends. Of course, only about 3-6 ever come. Thank goodness!
    Di

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  28. Oh, my goodness, I just read that news about the Republican convention. I died laughing. How perfect is that? It will give you enough ideas to write pages and pages on this blog. Not that you seem to be in want of inspiration but . . . it couldn't have happened to a nicer person!!!

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