Day After Day Zero

So yesterday was the day that I got my cells back and I must admit (as they told me it would be) it was a bit anticlimactic.

The nursing staff began me on fluids around 10 a.m. yesterday so that when I got my cells back they would have enough fluid in the body to swim to where they belonged (this is my explanation, not the scientific medical one).  After two hours of dreaded hydration, it was time!

They brought in a very small bag of cells, hooked it up in combination with some saline, and the result was a drip of runny-Bloody-Mary-mix.  While a Bloody Mary would have been openly welcome, the taste that ensued was so not so much as appetizing.  The whole process took about 40 minutes and two hard-candies worth of time -- that just seems so mind boggling to me.  The cells that are effectively going to restart my entire immune system can be infused in less than the time it takes to watch Mad Men.

While I try and still grapple with the fact that I just had a stem cell transplant and I am forced to eat off the limited BMT (Bone Marrow Transplant) menu, life here in the hospital is tolerable.  The BMT precautions are so over the top: I can't wait for a real cup of coffee and a breath of fresh air, but I have to keep reminding myself that this is my insurance policy I won't ever have to fight Cancer again.  Let me tell you what - that Silver Lining is hard to keep finding.

The latest escapade in the world of BMT dinners is that I ordered chicken fingers last night, and typically when you order such a dish, you get some kind of sauce to go with it (my particular sauce of choice is honey).  Well much to my dismay when dinner came, I had chicken fingers and fries with no sauce because apparently honey is a "natural product that can cause infection."  Obviously, I think this is a load of crap, but I don't make the rules unfortunately.

The other thing that sucks super big time about this place is that I can't feel the fresh air, breathe anything that isn't hepa-filtered, go outside my stupid pod or even walk without two "procedure masks" and gloves on.  When I feel good, I walk the floor pretty relentlessly, counting how many steps I take until I seem to lose count or until I feel the masks might suffocate me.  And when I feel bad, I lay in bed attempting to do anything that will take my mind off how much I don't want to be here.

Today I should get a bike for my room which should help with the boredom, fatigue and general feeling of laziness. Hopefully, if I bike everyday that I am allowed to (dictated by my counts) I won't be such a fat lazy mess when I get out of here.

I have at least had a few small victories around here: I am no longer on constant hydration, which I LOATHE... and I have argued my way out of the duck mask.

Now the duck mask is pretty much as awful as it sounds, it is a thick-layered orange material that has a VERY VERY small plastic band on it that secures to your head. Some of you might know that I have a small head, to the point where I can wear children's things - and this said duck mask almost cut off the circulation to my brain stem and to my cheeks.  Needless to say, I have negotiated my way out of the duck mask and into two procedure masks.

Ugh, how these small things are life's glory right now.

Love you all.

xoxo

Just a Quick Hello

Right now is the first time in the past few days that I have been able to get my mind around anything besides sleeping and resisting the urge to throw up. I have officially made my home here at 6B at the Brigham as comfortable as possible - which isn't too hard to do since I have some super stellar nurses.

I have moved into a bigger room which has its pros and cons - pros: more room for M and B, cons: shower isn't as good and not as much light.

Last night was pretty dreadful, I had horrible nightmares, was in considerable muscular pain and couldn't shake the overwhelming desire to dry heave all over everything.

Today is finally a bit better, I have showered, which always makes me feel better and I have walked around the pod.  

In my last post I was bragging about being a stem cell machine - apparently I am not as powerful as one man on my floor - he harvested 20 MILLION!!!

Well I am losing attention quickly. I'll post again soon.

T

I'm a Machine

Seven days after the actual date - here I am, exhausted from a fun-filled weekend in Nashville, and contemplating running away in hopes that being admitted to the hospital today won't actually happen.  People always say denial can be a super fun place if you make it that way :)

If you haven't been reading lately, shame on you, and if you have been checking in since my last post - many apologies for not posting sooner.

After last week's harvest, B and I received good news for once - I produced more than TWICE the stem cells needed for transplant -- in ONE day. So if you aren't really a math person and not so quick on your toes, I'll just go ahead and come out with it: they were able to harvest 4.83 million stem cells last Tuesday which I'm hoping is the center's record - I'll keep you posted on this after I do some sleuthing.

So after a much shorter week than I anticipated I was able to prepare for a weekend of mental escape before I had to return to reality.

That reality is possibly three+ weeks at BWH, four days of round-the-clock chemo, 0.0 white blood cell counts, blood transfusions, nausea meds and all of the other terrible side effects of chemo and killing your entire immune system.  Needless to say, as you can imagine, I am bursting at the seams with excitement.

All joking aside, I am excited to be on the other side of all of this where I can experience a day when I know that the peach fuss on my head means that my old flowing locks are soon to follow- for good, that my eyelashes will really be able to grow in to the full potential achieved by Latisse, and that I can reclaim my body and my life that I used to have. These seemingly inconsequential milestones are going to be my fuel these next few weeks - the propellent to keep me going.

Don't think that once I'm discharged that life will be fun or exciting - the list of do's and don'ts really weigh on the side of don'ts unfortunately... but I have to keep reminding myself that hopefully, this is the end of Cancer, this is the last time I have to deal with this.

I will publish my list of don't and cant-have's in the next few days so that if you are compelled to send/bring things over, you are well informed.

Posts will likely be scarce and/or drug-induced in the next few days so when I regain my mental capacity I will make an appearance.

Keep your fingers crossed - I need lots of good karma in the next few days.

xoxox

T

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.

What Happened to Easy Decisions?

I am still in such shock that all this is happening again - that my body is still filled with chemo and I have to make a huge decision as to where I want to go to put so much chemo back in my system that it kills my entire system. Such high doses that they have to rebuild my bone marrow, one stem cell at a time.

Besides the fact that this will be time consuming, has painful side effects and can be very dangerous with a heightened risk of infection, it can also ruin my chances of ever having my own children.

B and I met with a doctor last week to discuss our options for a family we can't even fathom having right now. The standard options for IVF might not be an option for us because our doctor hasn't encountered a patient in my position.  It seems to be the perfect storm almost: ovarian suppression for six months, four weeks out of chemo and having to go back into treatment in less than six months. These are all factors that Dr. T is concerned could cause problems for the "offspring" in the future.

Even larger than that, he is concerned about my health: how long do I have to wait? Can I afford to wait a few more months before I even start this next regimen?  

On top of these two questions, I'm not sure how I feel giving up my chances to be a mom to get this whole cancer thing over with with sooner.

So tomorrow I go back in for my first round of testing to see where we stand. Keep your fingers crossed that the horizon isn't too bleak.

xoxo

t