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

Friday, July 20, 2012

Lost Connection

Well, I'll start with saying I'm fine - as that's probably what most people are looking to see or hear.  It's bizarre, as I look at my last post being February, how easy it is to forget to update things.  Thanks to a reader who happened on one of my posts I've looked at my blog and realized 1) that I am not keeping in touch and confirming with everyone that I've not fallen off the radar and 2) that I've kept with the goal of my blog (as stated in the header) of this being my place to say what I want when I want (even if that when is separated by numerous months!

I'm monthly at the hospital to check my bloodwork and they've rolled out that really cool MyChart by Epic - which never gets updated and never really gives me anything I need - BUT IT'S GOT GREAT POTENTIAL!  The only other update is my NP, a good friend who made sure I was always taken care of, has left for another hospital and a different doctor - that's a bummer.  I need to see Dr J and I also need to schedule my visit to DFCI.  I'm on cycle 31 of my maintenance revlimid so we'll see what happens next.  Everything seems to be normal except I'm too busy, the summer is almost over and I can't keep up with my kids (they're getting too old way too quick).

Thanks again to everyone reading!

bill

Friday, February 24, 2012

My Annual Doughnut!

(This was written in Wed while at Mt Sinai but for some reason my BlogPress app want allowing me to publish - so this MSG is delayed a few days.)

I've been offline for quite awhile and for that I apologize. I guess when your not in the thick of things, updating the blog doesn't come as easily. Well, thi morning I am back for my annual PetCt to investigate my innards and determine if my bones are all still in the correct place (I never did learn that song, "neck bone connected to the...")

If you remember from a previous posting, the PetCT process involves a nuclear injection (IV). It's very intimidating as the sure wheels in a cart with a giant lead block (to protect her) and a gun-like apparatus in front of the block. They had inserted the IV prior and now they removed the nose of this gun-like piece and hooked the IV to the front of the gun. All of this being done while the nurse was meticulously hiding behind the big lead block. The injection was quick and sounded much like my son finishing off a milk shake.



Now I have to wait and hour for the glowing, radio-active substance to
circulate through my body. But that's ok - I have refreshments! The
(patented) Radi Cat2 Berrie Smoothie! So no food since midnight, nothing but water this morning (not even coffee) and I have approximately 37 more minutes to wait till I get the call to come in for my scan.
From there, I head back upstairs for my quarterly Zometa treatment. Once that's done, I can go get coffee and food. Now I'm thinking what that menu will include as I'm slowly getting starved!

All is well otherwise - my IGA numbers have remained in normal and I'm hoping to keep it that way for some time. I did increase my Revlimid dosage to 15 mg a few months ago but otherwise all signs are normal.

No other updates for now. Any questions, please holler - otherwise, thanks for reading!

- Posted using BlogPress from my iPad

Location:Mt Sinai, New York

Sunday, January 15, 2012

My AT&T Diatribe

First - an update - I'm fine.  Ok, a little more than that - numbers were trending up to the high part of normal but then broke back down again.  I'm 2 years in Near CR and everything else looks kosher but am expecting that at some point my numbers will get above normal and I'll have to address then.  Bottom line, a bone marrow biopsy done in Nov'11 shows less than 5% plasma cell penetration - which is actually normal.  However, when you look deeper, you can tell the cancer cells are there and still active - but I'm keeping it at bay.  And now for my 10 minutes of bitching at AT&T!

I've had an iPhone since day 1 (well, month one, not day one).  I was holding off on upgrading my 3GS until the 5 came out but alas, that wasn't to be and they only came with a 4s.  My wife surprised me w/ the new phone two days for Christmas and I love it (i'm an apple fan!).  I did exchange it for the 64gb but beyond that, aside from getting it authorized, I didn't (and wouldn't) involve AT&T - that would only screw things up.

I go online, I know what I want, I haven't touched my AT&T contract since my 3GS upgrade and I'm spending well north of $150/month for our two contracts.  Then I got  my most recent bill - THE FREE UPGRADE FOR MIGRATING MY ACCOUNT COST ME $18.00.  At this, I emailed AT&T and asked them why - here is their response:

Dear Mr. M,

Thank you for taking the time to e-mail AT&T regarding the upgrade fee.  My name is Kellye Johnson, and I am happy to help you with your inquiry.

Mr. M, the $18 fee is to allow us to assist customers with recommending new equipment, offering special offers and discounts, providing assistance with the upgrade process if needed, and supporting the returns process within 30 days. These specialized processes help us to ensure you are satisfied with your new equipment, and are ready to use it the day you receive it. The upgrade fee allows us to defray some of these additional service costs.

I encourage you to visit our web site (www.att.com/wireless) often to view current and previous monthly statements, make payments and to shop for new product and service offerings.

If you need to contact us again regarding a new issue please send us another email via the contact link through your online account.

Mr. M, we recognize that you have a choice in wireless providers and we thank you for choosing AT&T and being a valued customer for several years. My name is Kellye Johnson, and our goal is to continue to provide you with excellent service. 

Sincerely,

Kellye XXXX
AT&T
Online Customer Care Professional



I DON'T need their recommendations (more would I listen to them); NONE of their special offers affect my purchase of the iPhone (they only offer on droid, berry, etc.); they ONLY flip a switch, and in my case had to flip it ON, OFF, and ON again; the return process was NOT done through AT&T (again, they just flipped as switch, see above).  I DON'T see those costs needing to be "defrayed" and I would switch services but I really like the technical service (NOT, in ANY way, the customer service, from AT&T).


I had to speak my piece and will post a link on Facebook asking for anyone willing to pass it along as my one way to show AT&T that loyal customers use examples like this to seriously think if they've made the correct decision.  This doesn't help a charity and doesn't do anything else of ready import - but if you've had a similar experience, pass this along w/ your note!


Thanks for reading!


Bill