Monday, January 14, 2013

What to post?

I've been spending so much time Promoting Global Hair Loss I've not really been updating my blog with what's going on!  It's been fantastic planning and getting in touch with so many people and getting support from so many others.  I know the events will go off and we'll raise a fair amount of money that will go towards Myeloma research.  I can only hope that it helps in some way as I would sure love to find a cure!

Today is the 14th, 14 days from the day I enter the hospital for the BMT (bone marrow transplant).  For those uneducated readers I am have an autologous transplant.  Like a book I wrote about myself, an autobiography, the auto transplant is a transplant with my own stem cells.  So back in Jan/Feb of 2010 I harvested my cells and they put them in a freezer.  These will make a re-appearance on Jan 29!  Here's the quick details as I can remember them! :)

I arrive on 28 January and will have a "port" put in.  Where I couldn't get much details this is similar to the catheter I had inserted for the harvest but I've been told it's not as big (wide or long) and is an easier insertion, potentially bedside.  That surprises me but hey, we'll see.  That afternoon I will get the Melphalan which will proceed to attack all my cells, good or bad!  The melphalan will stay in my system for 12 hours and everything exposed is expected to be annihilated.

The next day is DAY 0 - By afternoon the melphalan will be out of my system and the port will be put to good use, giving me back my recently thawed old cells!  From that point forward I wait.  I get diarrhea, mouth sores, lack of appetite and other fun things - while I get to wait!  Around Day 6 I'm at my worst - where the melphalan has been successful but the new stuff hasn't quite grown up.  By Day 10 I should be approaching normal and sometime between day 12 and day 15 I get to go home (barring any complications.)

Food - I can have anything pasteurized.  I can have steak/lamb, when cooked at home, packed tight and kept refrigerated.  I can have vegetables, washed, roasted of course.  I can have yogurt (believe it or not) so I tweeted that I can have my Chobani and Chobani favorited my tweet!).  I can also have frozen fruit (if pasteurized).  I'm saying all this as it was recommended - I may not want to eat but when I do, I do NOT want to eat the hospital food!

Visitors - I can have visitors - I may not want them but I can have them!  No more than two at a time though.

Serious note - at some point I may need to have either blood or platelet transfusions.  This isn't expected but has happened in the past.  My boss is already pining to do the platelet donation (he does this often) and they can be directed specifically for me in the event there's a need.  I do not have the details on that process (to donate blood or platelet specifically to me) but will post details as a comment to this post.

For now - I'm done with blogging and done with PGHLing!  Good night!

3 comments:

melanie said...

amazes me how things like this are happening each and every day while the majority of people are unaware of it occuring. good luck! the visitors bit made me chuckle. thanks for the read

melanie

Terrij said...

Good luck. My 32 year old daughter had her transplant in August. She is doing well. One suggestion is suck on lots of ice when you get the Melphalan for a couple of days. She did this & did not get any mouth sores. She experienced all the symptoms you described but was out of the hospital in 17 days even with a couple of platelet transfusions. You are in my thoughts.

rugbyhubby said...

Mel - great to be back in touch - thanks for reading! TerriJ, I've heard that as well as popsicles. I am also bringing something my Doc in Boston recommended (for clarity: not for this purpose) called TheraBreath, a non-alcohol mouth rinse that I think may help - we'll see and I will definitely update my blog with results.

Cheers...