Part of the Numbers Game

Happy holiday weekend everyone! While most of us look forward to barbecues, trips, fireworks and really cold beer, this fourth of july I am celebrating six glorious years with the man I love and my last full week of a pure "bacteria free diet."  I'm sure B and M are thanking all 50 stars that they don't have to wear a dreaded pair of non-latex gloves or a beautiful 3M procedure mask another day in their lives.  

July 11 is 30 days or 40 days -- depending on where you start counting.  Thirty days marks one-month hospital free even though I will technically be day plus 40.  You can bet your last dollar that on July 11, B and I will be ordering takeout of some sort or going out for pizza (the two things that can be reintroduced to my diet.)

I must admit that the past few weeks have been trying.  We never really realized just how much we went out to eat. Or drank for that matter. No alcohol, no restaurant food, no thin-skinned fruit et cetera et cetera certainly took some adjusting.  The one thing I still can't get my mind around is I won't be able to frequent my dear JP Licks for peanut butter frozen yogurt for ONE YEAR!!!!  While peanut butter froyo is out, I have been certainly eating my fair share of PB&J lately.  To combat culinary boredom, I have been trying to find my inner Paula Deen and have succeeded on a few fronts: apparently I make a mean lamb chop courtesy of Hello!, a pretty delicious chicken artichoke pasta and a crispy pan fried chicken, oh and I almost forgot the butterscotch cookies that melted like buttah...

One of the other things that has been pretty hard getting used to about being home is that I remember nearly nothing from the hospital stay.  I just now had to go back and read my blog post about day plus one because I recollect nothing about it - just sitting on my bed writing!  As time goes on, stories have to be retold and B has to constantly remind me of the goings-on.  I have ultimately likened this experience to a partied-too-hard-college-Thursday-night. You go out, crazy things happen, you think you are making super sound decisions and the next thing you know, it's Friday morning and you have no idea how you got home or what happened after pre-gaming.  My last point of coherent memories is May 26 and my Friday morning came about June 10... pretty super I must admit.

Since my release, I have been to Dr. L twice which have both gone really well - my counts are slowly recovering... well let me rephrase this, most of my counts are recovering slowly. My platelets on the other hand tripled in one week thanks to my "robust" bone marrow! I am finally within the normal threshold for platelets (187,000 last week) which means I got to have a beer/one glass of wine AND I was switched to a less gag-worthy antibiotic. My white blood cells are half way to normal and my hematocrit is progressing at a good rate.  All small victories!

My appointments with Dr. L have now been extended to a month instead of every week which is great because I hate waiting in the waiting room at DFCI -- it's really depressing to look around at the packed waiting room and be reminded what an awful and omnipotent devil Cancer is.  

My next cancer-focused event is July 7 when I go into meet with my new radiation oncologist for another consultation and likely mapping.  From what I understand, mapping is where they will analyze all of my scans and decide where to aim the radiation beams. As all of you know, my tumor is a huge pain in the ass so obviously its location poses an inherent risk to my heart (SCARY!!).  But, my new doctor is a specialist in Hodgkin's disease and is very accomplished with tumors like mine so I feel pretty safe -- especially since he has a grandpa-like quality to him :)

I will keep you all posted on my upcoming radiation schedule and my takeout experience.

Best to you all! Happy Birthday America!!

T

Home at Last

I am finally home! I got back yesterday afternoon around 2 p.m. which is about 5 days earlier than I was supposed to get home.

Thank god.

I will post more later but just wanted to let y'all know.

xoxox

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