Monday, January 5, 2015

Siamo Qui

We are here. (In Italian.) I find myself whispering excusez-moi and lo siento mucho because I know I am somewhere not home, but where that is exactly sits way back in my mind so far. Shalom. They say shalom as a greeting and I like it, love it, but I feel like a fraud saying it yet. Hello.

Hello. My dad and I went on a walk down Dizengoff and saw this guy. I like how his package is shiny, as if people pet him there like a buddha belly for good luck. (I regret not doing so myself.)
I read that in Hebrew slang they say l'hizdangef, or להזדנגף‎ which means to Dizengoff oneself, to stroll down Dizengoff as it is a street known for strolling. Maybe I will co-opt that when I get home. Let's go l'hizdangef the Depot, I might say. But only when I get home. Kind of like how I only speak French to non-French speakers.
This is just a fruit stand I thought was pretty.
Of course I'm not here to sight-see, a fact that weighs on me when I am at the Super Pharm staring too long at shelves of shampoo. At least I think it is shampoo. Everything is in Hebrew, and I realize this must be what it's like to be illiterate, all the world a mishmash of strange looking scritches. Of course I don't need more shampoo anyway seeing as how I will be losing my hair in a few weeks.

Which brings me to why I am here. Hello again. Today I got my treatment schedule, as in: shit just got real, yo. Here it is for all you curious types, medical-minded or those undergoing HSCT:

Tomorrow: Get a picc line inserted. This is not necessary for everyone, just people like me with T-Rex arms and veins the size of angel hair pasta.
Wednesday (day -6): Campath 3mg
Thursday (day -5): Campath 9mg
Friday (day -4): day off (because I will be feeling sick)
Saturday (day -3): day off (sick again)
Sunday (day -2): Fludarabin 40mg/m² and Cytoxan 60mg/kg, then Bone Marrow Aspiration. This is the big time chemo followed by them taking out the stem cells. For the next 3 days I will be staying at the clinic.
Monday (day -1): Fludarabin 40mg/m² and Cytoxan 60mg/kg. More big time chemo. I was told this would be brutal.
Tuesday (day 0): Bone Marrow Transplant. I get my stem cells back, as in January 13 will be my new birthday! They said I will feel better immediately following the bone marrow transplant, but still pretty crappy, a.k.a. there will be varying degrees of feeling really fucking terrible.
Wednesday (day 1): If all goes well and there is no fever, should be able to go back to my hotel room, and this is when effective isolation starts. I will feel pretty awful for the first week, and then around day +11 through day +14 engraftment happens, when my immune system starts to rebuild.

I was also told that my hair will start to fall out around the time of engraftment. So I will trade my hair for a healthy immune system. Side note: while typing that I flashed on there maybe being a biblical story about hair (side side note: can you tell I have never read the bible?) so I Googled it and yeah, something something about Samson and his hair as his strength and it all went down in Israel, yadda yadda, I skimmed it and hope that there is no corollary.
View from the hotel of The White City with the Mediterranean in the distance.
So that's that. Except it's not, of course. There is so much to say about the nurses at CTCI (amazing), the culture (very different), the food (not sure what I am eating, but that's cool), and beneath it all is a deep guttural aching for Bryan, Zoey and Ozzy, but I will save that for another time.

Adios muchachos,
S

12 comments:

Danielle Sciocchetti said...

love and strength sent your way.

Mona said...

Wishing you all strength needed to get through this smoothly.
If you do have time energy to do something highly recommend a walk through "Neve Tzedek " area it's older nice quaint neighbourhood lovely to eat lunch pick yourself a gift.
Or weather permitting a seaside lunch. Before the thug treatment starts .
Best of luck.

Good Enough Woman said...

Thinking of you and wishing you well!

Alyssa Hertzig said...

Wow! Sounds like you have some very intense days coming up. Wishing you all the luck in the world! You'll be great!

Cathi said...

Sending you lots of love and strength! xxoo

Anonymous said...

Sending you strength, hoping you enjoy the food while you can and thinking you should wash the heck out of your beautiful hair while it's still there. Will your dad be with you the whole time? I hope so.

I can't imagine how much you are missing your kids.

Mr. X said...

Dearest Susannah,

Your courage, to put it mildly, is unfuckingbelievable.

You may contest this accolade, but, your trek to the other side of the world proves my point.

While you have a lot of things on your agenda (and mind!), I hope you will consider trying to focus only on the immediate task at hand. Whatever that may be.

That may seem absurdly obvious, but, if you're anything like me, you may be prone to thinking about the next 10 steps. Keeping focused on the immediate task has helped me in times of stress and anxiety. Focus only on what you can control.

I'm not one for "woo-woo," but a positive affirmation may also be helpful. Something like: "My body is healing rapidly and successfully." Or, whatever feels right. If nothing else, it might prevent you from thinking unhelpful thoughts.

Free advice and worth every penny.

I just wish there were something more I could offer or do. I'm sure everyone else feels the same way. Just keep moving forward. "Inch-by-inch, life's a cinch." I believe that saying.

Best wishes from the Carolinas,

Mr. X

Anonymous said...

You are kept in my constant prayers, Susannah.

"Inch by inch, life's a cinch" - I love that, Mr. X!

Blessings

Anonymous said...

My fingers are crossed for you and I know you'll pull through this with flying colors. As mothers, we all can imagine how much you miss your babies and hopefully the daily skype sessions will give you some relief. You need all your strength to get healthy and for the three reason you have sitting at home. Good luck!!

Petunia Face said...

Thank you all for your comments and support. It really helps knowing you're there, rooting me on.

And Mr. X--you need a blog because your writing is fantastic. As is your advice and good vibes.

Thank you thank you!
Love,
S

Lindsay said...

I am a reader from the beginning, but not a commenter - not here, not anywhere. But here I am. Wishing you strength, positivity and health. I had to go through a separation from my two oldest daughters for 6 weeks...not for my health, but for my youngest daughter's health. It is hard to be away from your kids. Like Mr. X said, focus on the immediate - the treatment at hand, the day, the hour. This helps. Thank you for letting all of us follow you on this journey.

Anonymous said...

Golden Chain Prayer

We are a link in Amida's golden chain

of love that stretches around the world.

We will keep our link bright and strong.



We will be kind and gentle to every living thing

And protect all who are weaker than ourselves.



We will think pure and beautiful thoughts,

Say pure and beautiful words,

And do pure and beautiful deeds.



May every link in Amida's chain of love be bright and strong,

And may we all attain perfect peace.

Namo Amida Buddha.

~Suzannah, you are in my thoughts & meditations. You are strong! What is hair? Who needs it! ;)
~Connie in VA