Friday, December 28, 2012

The Dreaded Discussion

So last night, in the wake of present and sugar highs from the recent holiday, we opted to tell the kids what was going on with me and my medical condition.  When you ponder the situation, there's no real easy way to start the conversation.  Yesterday afternoon I was home a bit early and the kids arrived shortly after my return.  All week my son would sneak up on your and yell, "Secret Santa"!  I decided to get back at him as they didn't realize I was home.  I snuck out from the bed room and yelled "secret santa" and my daughter looked at me, screamed, and then continued screaming.  If she was any younger I swear she would have peed her pants!  I felt soo bad.  Until I started the conversation that evening....

"Daddy's going to have to go to the hospital for a little while."  Both kids started welling up and were starting to get upset.  I explained that I'm going to be ok and the lightened up a bit.  We talked about my needing to be in hospital for three weeks and that I'll be a bit banged up when I return but I'll be back to normal shortly thereafter.  We were told to tell them both at the same time as my daughter (younger, going to be 6 very soon) would ask questions my son was afraid to ask.  I don't think he was afraid, I think he would have never thought of these questions, "will you end up peeing out of your armpit?"

I didn't see that one coming!

At the end of the day I think they got it.  We told them it was ok to talk about it with their friends but if any of their friends say something that they don't understand and potentially makes them scared then to come back and talk to us.  We will give them the full answer, nobody else will know as much as we do, no matter what their friends say.  I also explained that I will lose my hair and also set them at ease a bit in saying I lost my hair many years ago.  This was the same thing and I've been doing well for the last three years - no reason to think I wont be the same for the next three years!

I tried to talk Dilyn into joining me in Promoting Global Hair Loss but he's not interested in cutting his hair!  He felt bad and immediately wanted to see some of his toys, give us everything in his piggy bank and sell his sunglasses in order to raise money.  I'll still try to talk him into it but I'm not going to pressure him - however, he'd be a big money raiser!

So the kids know now, I can be open about things - now just have to make sure they don't get scared!  I'm glad they took it as well as they did!

I hope everyone has a great new year!

Bill

Saturday, December 22, 2012

BMT is Not Just a Subway Sandwich!

Trying to find catchy titles to encourage readership of your blog has always been one of the things that attracted me to keeping a blog.  Now that I'm trying to post and tweet and write my blog I find I've run out of cool and funny things to say - go figure!

I just wanted to give a quick recap of what I've got planned and take a brief moment from Promoting Global Hair Loss (@PromotingGHL or #PGHL).  On 28 January I go in for my bone marrow transplant (BMT).  The procedure, as I understand it, and in lay persons terms is relatively simple.  I go in on Monday and get Melphalan.  This is probably the most powerful chemo I've gotten to date and I'm expecting the worst.  In a general sense, Melphalan is like a pesticide introduced into your body that only has a 12 hour shelf life.  After 12 hours it's used up and no longer has any harm on the body.  However, during that first 12 hours it's basically killing everything it's exposed to.  So basically all red, white, purple cells that are exposed to the Melph are now dying.  But it takes a few days for them to completely die.  At the end of those few days I have absolutely no immunity - as I've been saying,  a sneeze in Jersey could be the death of me!  On Tuesday my old cells get pulled out of the freezer, put into a microwave and get put back into my body.  Since these cells weren't exposed to the Melph there's no worry but they need to grow.  So while one set of cells are dying off, the other set is just starting off.  I believe it's about day 5 (with Tuesday being day 0) that I'm at my worst and by day 10 I should be coming back to about normal.  By day 15 I should be out of the hospital and heading back home.

Once home I'll need to be in regular contact w/ the hospital and I've not yet sorted what needs to be done to determine when I can actually get back to work.  For now, I need to buy some Glutosolve and ProBiotics which I'm supposed to take approximately 14 days in advance of the BMT.  I go into the hospital on 9 January to go through a series of tests and meetings (nutritionist, etc.) so I'll have more details then.

That's it for now.  More later - till then keep Promoting Global Hair Loss - find a friend to have a party and shave their head to raise money for the MMRF!

thanks...Bill

Monday, December 17, 2012

Promoting Global Hair Loss!

Save the date - 19 January, 2013 (or anytime that weekend!)
We Are Promoting Global Hair Loss!
On the 28th of January I go in for my bone marrow transplant. At that time, courtesy of the Melphalan, I will lose my hair yet again. So in advance of that I'm breaking out the clippers and will raise money to shave it all off! The difference here is I'm calling in all my markers and asking everyone I know, all the world over, to join me. I'm looking for volunteers who will host an event in their hometown to shave their head (or their friends or whomever will let them, as long as you agree that the person must be fully conscious at the time of making this commitment!). I will be raising money for Multiple Myeloma but I'm happy for you or raise money for any charitable cause you deem appropriate (but if you can't think of one, use mine!)
I'd like someone (multiple someone's) to do this in Hongkers - c'mon guys, you know who you are and what better way to end the rugby season! I'm also looking for someone in Switzerland (though I know this will be more difficult!). I know I have someone in Vermont and I expect I may get someone in Boston. I need to get a Brit (in London but expats in NYC can join me!). The most impressive offer I have gotten thus far is from North Carolina where an old high school buddy has agreed to NOT shave her legs till the 19th and then raise money to get them clean!!!
I will create a board where you can donate to the myeloma research foundation and you will be able to donate there or feel free to go and create your own board. I will also post details on how to take advantage of company matching! I will also have a page on my blog as well as a page on Facebook. The intention is to have this be one big party with pictures, videos and anything else we can do via fbook and my blog!
If interested in joining the party, even if I have no idea who you are, please reach out here or on Facebook and I will have details posted regarding your event.
So save the date, 19 Jan, and Promote Global Hair Loss!

- Posted using BlogPress from my iPad

Sunday, December 9, 2012

Back In The Saddle

It was in September of 2008 when I went in for my annual Doctor visit and was asked to get my blood work done a second time.  After being accused of taking protein supplements (I was trying to get beyond my lackluster version of "fit" for rugby season and I think my doc was jealous) I was sent to a specialist to figure out why my Total Protein was well above normal.  It was at that time that I discovered a new family of acronyms, starting with MGUS (Monoclonal gammopathy of undetermined significance).  After a series of tests, including my first Bone Marrow Biopsy, I was diagnosed with Multiple Myeloma.  Shortly thereafter, the Friends & Family Network kicked in and I was meeting with as may doctors as I could find and settled on Dana Farber in Boston.  However, doing the four month's of chemo there would be a bit challenging and I was given the name of a doctor at St Vincent's here in the city.  In October of 2009 my numbers started to increase and I needed to start the chemo program.  By November of 2009 I was in a near-complete remission and and in January of 2010 I harvested my cells, put them in a freezer and started my maintenance having, for the time, avoided the need for a bone marrow transplant.

I've now been on maintenance chemo for about three years and my numbers have started to rise again.  Granted, they're nowhere near what they were when I was first diagnosed but that's the beauty of watching these things monthly.  In August of this year my numbers were creeping up beyond normal and the doc put me on steroids in addition to the Revlimid.  Thanks to Mr Steroid I'm back to my normal flatulent self; however, it's now time to actually schedule the transplant.

I will post details later but I'm currently scheduled for Jan 28 to go through the process.  It will be three weeks in the hospital and then a few weeks after being cautious and avoiding people with the sniffles!  Now, in addition to planning for the transplant, heading into the holidays, I need to also coordinate telling the kids (they're too old to let the hair loss slide this time!)  So with that, I will need to coordinate a big party to shave my head!  I'm hoping I can coordinate a big "Global Hair Loss" event and will reach out to all corners of the world to encourage support - IF i can get my act together!

That's all for now!

Bill