Surrender to the Machine

My traveling electronic shop is up and running again as I sit here at the Kraft Donor Center sporting my Bose headphones, listening to my iPod, blogging on my iBook and texting on my iPhone - well actually I think this sounds more like an Apple endorsement...

This is certainly an interesting experience, this blood center place. Currently there are six of us on my side of the floor that will go through harvest today - I have already started and can officially see the beginning of my stem cells in the collection bag. The setup of tubes and everything is pretty wild. They are using my new Hickman Line that I had put in yesterday which is yielding its own complications and pain. While my neck is throbbing from the surgery it is a pretty cool contraption - it has one line that takes the blood out and one line that puts it back in.

I must admit that I never realized how dark my blood is! It kind of reminds me of my adorable red Burberry patent flats... weird thought, I know.

So as I mentioned before I am sincerely hoping for two million stem cells in record time. According to my nurse, my stem cell count yesterday was around 20-something and they were expecting it at around five. Hopefully this means I can get all two million today - I should know more about my progress later on today.

The unfortunate thing about today is that we can't be disconnected from our machines - at all, for any circumstance.  This should make my overactive bladder very happy :)  My goal for today is to watch a few movies, work on B's new needlepoint belt and try and get some sleep since that was a bit difficult last night.

Keep your fingers crossed.

Below are some pictures of the machine and one of me with all my blood on the move.

Just Another Day... kinda

My transplant is quickly approaching - while I am not sitting in the clinic or the donor center this weekend, I will begin what they call mobilization.  For the next five days, I will be getting two shots per day that help stimulate bone marrow growth.

When the bone marrow gets too full with stem cells, the SC are forced to escape out into the blood - hence causing bone pain.  One of the nurses said the reason patients are in so much discomfort and pain is because the stem cells are exploding out of the marrow (nice visual right?).  As you can imagine the pain is imminent.

For those of you who have read previous entries I have talked about bone pain before and according to some professionals, this drug I am going on is the industrial strength rendition of my old, apparently sissy version.

So while this weekend is supposed to be beautiful and outdoor activities should be in the queue I have a hunch I might be in a Percocet induced stupor.

Monday I go in for my Hickman line placement and then Tuesday I am off to the Kraft Donor Center to surrender my stem cells.  I will keep you all posted on my progress but as I mentioned in my last post, we are hoping for two million stem cells in record time!

The Magic Number

The past few days have been so insane! My mom and I have spent approximately 24 out of the past 72 hours at Dana Farber clinics - while the hours have been overwhelming and exhausting, the results have certainly been rewarding.

On Monday, I went through quite a few tests to prepare myself for the stem cell transplant with no idea if my fourth Pet Scan was going to provide me with good news -- well, drum roll please, at 4:30 p.m. on Monday we found out that I have no residual disease left!!  I can't even explain how exciting this is for me and my family. I'm sure many of you are sitting at your computers asking, "What does this mean?"  Well, what it means is that I am now preparing my body and mind for a autologous stem cell transplant (translation= I will use my own) at DFCI.

I'm sure you might also be asking, well why do you need a transplant if there is no disease visible?  Essentially, it is the superglue that makes the remission stick and forcing the body to relearn everything it has ever been taught -- AND if the body doesn't know Cancer then it can regenerate itself without ever knowing Cancer's torturous existence.  The transplant is so powerful that I will have to receive all of my childhood vaccines again because my immune system will be completely erased.

This process is certainly not easy but seems to be our only option to defeat this disease -- it also holds quite a few magic numbers that M, B and I will be living by.  On May 18 I go in to have my stem cells harvested and we are hoping for 2 million in record time (preferably one to two days); on May 25 I am admitted to the hospital at Brigham and Women's (BWH) for hopefully less than 21 days; seven days after admission, I get my stem cells back and I experience the meaning of Day Zero; and at 100 days I look forward to living my life as close to normal as possible.

For the next week or so, I have to wait for insurance approval, go in for more blood tests and then I prepare for surgery to have a Hickman Line put in on May 17.  I will blog again soon but I wanted to share the good news with all of you!

xoxo
T

Click here to read more about Stem Cell transplants.

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).