Day +10

No matter what we were told at the detailed pre-transplant meeting and from Seth’s doctors and nurses, and all that we read, until one actually goes through the post transplant process no one can really comprehend it.

Seth has had the spiked fevers (to be expected), extreme fatigue (to be expected) lack of concentration(to be expected) some infections being treated by a myriad of drugs (to be expected) some confusion caused by some of the medications(to be expected) transfusions (to be expected) and so according to the doctors he is doing “fine”.  His numbers are very low and he will continue to feel this way until they start to recover. In reality he probably has another 3 or 4 days at this low point and then if all goes well he should begin to get stronger as his numbers begin to go up. We expect this will be a gradual improvement and we look forward to sharing that with you.

Your wishes, and love and faith are a constant support for all of us.

Mom

Day +4+

Just to give you an update:  Seth is going through the post transplant process quite well.  As expected, the medication he is taking is bringing his blood counts down. (this is a good thing)  The goal is to NOT to have an immune system so that nothing will interfere with the new growth of healthy blood cells but leaves him open to the chance of infection.  What a delicate balancing act this is.  All of this is making him feel extremely tired. The nutritionist has come in and told Seth that he should not think about eating as enjoying a meal but rather that the food is a medication needed to increase his strength.  As to be expected he does not have a good appetite and certainly hospital food does not help matters at all.  So we are now back to the challenge of finding something that is not too bad to eat.

Seth is hoping that he will be able to get back to the blog soon but asks for your understanding that  he just needs to conserve all his energy right now, as even talking makes him tired.

Please support us/join us for our Light the Night Walk either in Philadelphia (Sept 29) or in New York (Oct 4)

We thank you for all your prayers and good wishes.  They are a constant source of strength for all of us.

Mom

Transplant day 0: Receiving cells

It was an anxiety-ridden day, but all went well. Around 1pm all sorts of people were in the room – the defroster, the nurse practitioner administering the cells, my oncologist’s assistant, two nurses, my mom, my brother, his wife and tons of prayers and spirits of good will — in a tiny tiny room. (Oh … and myself)

All went very well except for a little weariness and discomfort in bed later, and some food issues. It was a long day but a good one.

I’m writing to you now from the beginning of day 1 and I feel fine but the journey ahead will test the binding of the new stem-cells to my body and see what happens from there.

I know my blood type will change – I’m formerly A-positive, my donor is B-positive – and I can’t wait to see what else changes. By far the biggest outwardly change is my name.

It is typical to consider day 0 your new birthday and as such, at events such as this, my rabbi even advised that I can add to my name. So I have decided to add “Yigal Chaim” – liberated/recaptured life – to my Jewish name and my rabbi will name me in services for Yom Kippur.

The whole religious aspect of this adventure still rings out sharply for me. “Hayom harat olam” – today the world is born we declare as part of the Yom Kippur liturgy. I can’t help but feel a whole new me is born too.

May we all be inscribed a happy and healthy new year – gamar chatimah tovah!

Strength and love,
Seth

Please remember to support us for the Light the Night Walk:

To make a donation, please visit:
http://www.active.com/donate/ltnNewYo/2154_krpalmer

To join the team and walk with us in NYC on October 4th (of in Philadelphia on September 29th) – my mom and Voodoo are team captain (I’ll be in the hospital in the middle of the transplant procedure), please visit my recent blog entry with directions to join: https://survivingleukemia.wordpress.com/2007/09/09/light-the-night-walk-nyc-philla/
(it’s not the greatest user experience – my apologies in advance)

Transplant days -3, -2: Total Body Irradiation (TBI)

I think my anxiety leading up to this procedure was probably disproportionate to what the actual experience was. Fear of the unknown. It was fairly simple: put me  on a table, close the door and a low-level buzz for about12 minutes. Then they came in, literally flipped me over and 12 minutes later I was done.

Now I’m definitely feeling some weariness but am not totally wiped out. Some nausea but Atavan has been helping.

And while I was roasting today, they were allo-cleaning my room — making it biologically safe for me. It’s a cleaning that takes 4 hours to do and everything is scrubbed down and reset and wiped down. And then my first thing upon coming back was taking an antimicrobial shower. (That will be every day now.)

Tomorrow’s the last day of TBI and then the transplant on Thursday. Will write again as time permits.

Strength and Love,
Seth

Please remember to support us for the Light the Night Walk:

To make a donation, please visit:
http://www.active.com/donate/ltnNewYo/2154_krpalmer

To join the team and walk with us in NYC on October 4th (of in Philadelphia on September 29th) – my mom and Voodoo are team captain (I’ll be in the hospital in the middle of the transplant procedure), please visit my recent blog entry with directions to join: https://survivingleukemia.wordpress.com/2007/09/09/light-the-night-walk-nyc-philla/
(it’s not the greatest user experience – my apologies in advance)

Transplant day -4: Chemotherapy again

They are pumping me full of saline solution – liters and liters of the stuff – to keep my bladder irrigated which is the standard procedure to avoid infection. The corollary effect, however, is a lot of … uh … discharge. The Chemo is starting to make me queasy but it’s being managed. My appetite is already gone and I’m feeling sleepy and a little down, but generally still feel like I’m on a good track.

Tomorrow we start radiation. That scares the shit out of me. But I have CDs with me that they can play whilst I’m being zapped so hopefully that’ll be ok. It may be difficult to write for a couple of days given the upcoming procedure, but I’ll try.

Strength and love,
Seth

PS: Please remember to support us for the Light the Night Walk:

To make a donation, please visit:
http://www.active.com/donate/ltnNewYo/2154_krpalmer

To join the team and walk with us in NYC on October 4th – my mom and Voodoo are team captain (I’ll be in the hospital in the middle of the transplant procedure), please visit my recent blog entry with directions to join: https://survivingleukemia.wordpress.com/2007/09/09/light-the-night-walk-nyc-philla/
(it’s not the greatest user experience – my apologies in advance)

Thank you.

Transplant, day -5: Chemotherapy

It was a fairly uneventful day after getting a foley line installed. I received my chemo today along with anti-nauseau drugs, some magnesium and a bunch of vitamin E. I had a diuretic to help get some of the fluid out of my bladder which is being flushed and that’s worked well. I’m tired earlier than usual so I’m going to sleep. Will try to write to up the blog as I can through the process.

Strength and Love,
Seth

PS: Please remember to support us for the Light the Night Walk:

To make a donation, please visit:
http://www.active.com/donate/ltnNewYo/2154_krpalmer

To join the team and walk with us in NYC on October 4th – my mom and Voodoo are team captain (I’ll be in the hospital in the middle of the transplant procedure), please visit my recent blog entry with directions to join: https://survivingleukemia.wordpress.com/2007/09/09/light-the-night-walk-nyc-philla/
(it’s not the greatest user experience – my apologies in advance)

Thank you.

Back in hospital now

Was admitted this afternoon after some initial administrative issues. Had the procedure to install my hickman lines and am resting comfortably before moving me to my bed up on Rhoads 7. More to come.