Wait and See

Hey everyone - sorry it has been so long since my last post but I am finally feeling a little better and closer to my normal self (well as normal as that ever was.)

I have been trying to keep myself busy during the days with a variety of projects, none of which seem to be cleaning the house or unloading the dishwasher (much to B's dismay... just kidding honey) The most recent project I have picked up is an old scrapbook that I started, oh about four years ago, and have rekindled my romance with scrapbooking.  Apparently this project trumps the two needlepoint projects that I currently have going on, The Girl with the Dragon Tattoo, the hats I need to make for the hospital or the page full of thank you notes I need to write -- so to all of you who sent me a heartfelt gift for my birthday, I promise your thank you note is coming and I LOVED everything!!

Besides piling crafting projects on myself, I have also been working at trying to get my head down to totally bald - as I mentioned in my last post, I thought it was imminent - now it is pretty much a reality.  I have recently learned a few things about being bald and hair loss:

1. it isn't as easy to lose hair, when it is super short - I have since come up with a solution (that is to come later)

2. a smooth head seems to stick to everything.  Just yesterday I was laying on the couch with what I like to think are my softly lotioned hands, and low and behold - my hands STUCK to my head.  How many lucky people can say that?!

3. your head really is a huge heat conductor - it was 70-something degrees and I was walking around the house with a cashmere beanie on.

As I have been trying to enjoy the weather, I have also been trying to not burn more superwhite scalp to a crisp. I never knew how fairskinned I really was - I mean it is astonishing. Thank god I tan easily or I could give Nicole Kidman a run for her money...  I mean people say fair skin is back in, but I think two-tone is the next thing, tan face and white scalp is really the look of the future.  

According to my mother, I have never been this bald, EVER, not even when I was a baby - so needless to say, it has been an interesting experience for all those involved. SO as I mentioned in bald-point-number-one, getting to this almost bald status has been challenging to say the least.  I was really hoping for a mass exodus that would leave me Doctor-Evil bald but instead we have had to use some interesting means to get there.  I have certain spots on my head that felt out entirely, I have some that seem to be holding on for some reason and then I have others that needed a little assistance. So M and B decided to give a lintroller a twirl - that's right, the same contraption you use to gather up errant pet hair. Miraculously it works! So to rid myself of Dalmatian spots and to achieve total smoothness, I have been lintrolling my head to nab those pesky spots. Below are a couple of photos, the first was last week and since then I am a bit more smooth :) 

My eyebrows will be falling out shortly, but I am prolonging their demise for as long as I can AND thanks to Latisse, my eyelashes seem to be holding strong. I am going to continue using it through transplant and see how it works.

So, this is a status update on me - the next thing I really have to do is go in on May 3 for my PET Scan and a battery of other tests over at Dana Farber.  As I mentioned before, please please think positive thoughts for CR and keep me in your prayers.

Enjoy your weekends everyone! 

Hurry Up Already

Greetings from bay 22 - Moakley Clinic.

Today marks the first day of the second round of ICE. I can't believe three weeks have already passed since the last time I sat in this very bed.  This time everything seems a bit different: maybe it all has a little tinge of dread but also a glimmer of hope that this could be the second to last regimen of chemotherapy I will ever have to receive.

Also, I am thankful today for innovation and clinical trials.  If you read my last post, consuming the Mesna is absolutely atrocious, we were trying to do anything we could do to avoid me having to drink it again.  So much so we were going to have an in-home nurse come and administer it through my port.  Well turns out we won't need to do that!  When the doctors did a clinical trial on the administration of ICE, they chose to administer the Ifosfomide in combination with the Mesna in one BIG bag instead of separate small bags and then the at-home-dose.  According to the trial, only 1 out of 70-something people experienced the bleeding so those odds are in my favor :) So when given this option I was stoked BECAUSE I don't have to drink that nasty stuff again.

For those of you who have been following my hair-loss and growth progression - there have been a few updates lately.  Around Thursday, my scalp started hurting and by Thursday afternoon, the first clumps of hair started coming out.  Later on Thursday I gave myself my first haircut and took it down to 1/4" - within 24 hours or so, I had B shave it all the way down to nearly nothing (the only way to describe it is I didn't have to use an attachment on the clippers).  After some monitoring and predictions it looks like I am going to go totally bald - I mean skinheaded softness.  At this point I just wish everything would hurry up already and fall out so I can just have a super soft head instead of the lingering prickly hair that is interrupting everything including my sleep.  I will post a picture sometime so y'all can visualize :)

I will keep you posted on any new developments. Keeping sending positive karmic wishes that this works and will put me in CR (complete remission).