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.

   

 

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.

 

 

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.

 

 

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.

 

 

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.

 

 

 

 

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”.

 

 

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.

 

 

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.  

 

 

 

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!

  

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.

 

 

 

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.

 

 

 

 

 

 

 

 

 

 

 

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.

 

 

 

 

 

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?

 

 

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

 

 

 

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.