Got the medications regimen I will be under in the hospital

The conditioning regimen is high dose Busulfex and Fludarabine which starts 7 days before I receive cells.

The graft versus host disease prophylaxis medications are:

Bortezomib (Velcade)  which is the "study" medication on the trial. It's given intravenously on Days +1, 4 and 7.

Methotrexate, intravenous  dose given Day +1, 3, 6 and 11.

Tacrolimus (aka Prograf or FK506) will start Day + 3 and continue post transplant.

Fun fun fun..

Guess things are really low

When the RN went over the procedures and processes, it was mentioned that two leads would be inserted in the  chest.

These leads will have multiple channels for feeding, the various meds, and so on.

What is interesting is that my levels are so low, I will need a platelet transfusion prior to getting them put in.

I knew they were really low but wow.

I was also told that the anti-rejection drugs are going to play havoc with my head.

For the first couple weeks, something so simple as tying a shoe will be a pretty intense thing.

Guess this means I can read a book then pick it up again like I never read it. Cool!

Was really hoping to leverage the downtime to read manuals and otherwise catch-up but the brain will be checked out.

Bummer.

One positive note - so to speak

When having our discussion with the coordinating RN, we discovered that I will likely lose about 40 pounds.

I know it isn't for the right reasons but ...  Cool!

Long day at Dana Farber

We started the day with the doctor giving a brief overview of things and a slew of paperwork.

With all of the consent forms and such, you would have sworn we were buying a house!

Next came an injection to test for TB and a meeting with a social worker.

The social worker was actually very useful.

We found a way to get cards for gas as well as a way to get free parking for the duration of my stay at the hospital.

I then did a puliminary function test and lab draw.

The pulinary test was a non event but I was amazed at the lab draw. They took twenty one (21) vials of blood from me. Holeee crap!

The afternoon was spent doing an EKG, chest x-ray, echocardiogram, and an info session with the coordinating RN.

She was fantastic, going through every detail. We were given a calendar which broke down each thing that was happening and what I am likely to experience on a per day basis.

Dana Farber definitely has their act together.

We largely went from appointment to appointment like clockwork.

Looks like today is the day I stop using a razor to shave the head

I cut myself shaving the back of the head early this morning and it wont stop bleeding.

We have been using gauze and band-aids to deal with it but it just wont stop.

The bandages have been changed out about 4-5 times so far and every time, it starts and soaks through.

Looks like I will have to see the doctor in the morning,

This is embarrassing  because the cut is only an inch long and pencil line thin.

Latest level check

Levels continue their slow decline which is about all I can expect.

I am getting more and more exhausted which is really beginning to suck mightily.

Joint pain is getting worse. Going to have to start taking oxycodone on a daily basis.

FMLA dates set and submitted

The coordinator at Dana Farber has been really great.

She completed and sent the FMLA paperwork back to my office in just a day.

Got dates set for July 6th through Monday September 12th.

From that point on, I ideally should be covered under the ADA accommodation.

Still working to get that paperwork going but definitely progress.

Admit date has changed

Received a notice from Dana Farber this evening that the admit date is no longer July 8th.

It is now July 6th!

The oncology specialist is going to have me do a chemo based regimen (as opposed to chemo and radiation) which is why I am coming in a little earlier.

More on the anticipated dates

Heard a little more from Dana Farber this evening.

The coordinator reiterated that I will likely be in the hospital for 30 days so I should be home in mid August.

What  surprised me was her statement that I can probably anticipate returning around September 15th.

The coordinator states I will not feel well enough to doing much of anything, much less working, when I get out.

It is realistic but I am kind of bummed as well.

Hate the idea of being out of the mix for that long.

Hospital admitance date confirmed

Heard from the coordinator at Dana Farber this afternoon.

The donor has confirmed a stem cell collection from 7/13-14.

This makes my admit a confirmed July 8th.

Excellent news!

Results of latest level check

I went to the oncologist again this morning to check my levels and the news is pretty much all I can hope for.

Red blood, hemoglobin, platelet, and white cell counts continue to decline but not sharply.

Energy levels continue to decline and joint pain is get more and more intense.

Just walking to and from the train stain or going upstairs can be an "experience".

I have my magic pills, oxycodone, but they are not really an option during the day.

Taking enough to control the pain either puts me to sleep or fuzzes the head.