The Missing Post

Many of you have been patiently waiting for the infamous list of can and cannots. When you’re a prisoner of your own room the only things you want are the ones that make you feel like home. Of which the most notable of those, flowers and food, are off limits. Here is a short version while she is still in the hospital.

No…

• Fresh or dried flowers.
• Delicious dished that many of you have offered to prepare.
• With the drowsiness and fatigue T hasn’t been able to keep up with reading the books and magazines that many of you have passed along so I think it is a good idea to hold off on reading material for a week or two.
• Latex balloons or anything else that has latex.
• No candies with nuts.

Yes…

• Candy and food that has been processed and pasteurized.
• Mylar balloons.

Visitation is obviously based on how T feels. If you have a day you would like to visit contact me in advance and then I will let you know she feels that day.

B 

T Plus 6 and Counting

No, this isn’t a blotched NASA launch but it might as well be if I’m piloting T’s blog. It’s B here again filling in the blanks since T’s last post five days ago.

As of T’s last post (Day +1) she was full of energy and in good health despite being well on her way to a non-existent immune system.  Since then she has had two blood transfusions and one platelet transfusion. Logistically, there was nothing to the three additional transplants with the help her Hickman Line. However, emotionally it required wrapping her mind around the thought that it wasn’t her own.

From Day +3 to Day +5, T’s white blood cells have continued plummet resulting in the growth of increasingly painful sores in her throat and mouth. After responding 8 to the question “On a scale of 1 to 10 what is your pain,” after every dose of painkiller wore off the team at 6b installed T’s very own PCA that delivers a morphine like drug at the touch of a button. On top of that the itching caused by the blisters that keep developing under her Hickman dressing are enough to drive someone mad.

I wish we were counting down but it seems more like we are now counting up until her white blood cells blast off.

For your viewing pleasure I have graphed the indicators of T’s immune system.

WBC – White Blood Cells

            The lack of a high WBC count is the biggest factor in the 
            development of her sores and pain.

HCT – Hematocrit

            The portion of the blood that is occupied by red blood cells.

            HCT levels less than 26 require blood transfusions

            Excuse the Gap.

PLT – Platelets

            PLT levels below 10,000 require platelet transfusions

            Table Shown in thousands (000s)

Key

* Blood Transfusion Days

+ Platelet Transfusion Days

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