Wednesday, January 14, 2015

Day +1 It's All Up From Here Except When It's Supposed To Go Down Again

First of all, sorry for the radio silence. But god damn this is harder than I thought it would be.
View from the clinic room, my home for the past 3 days.
The Bone Marrow Aspiration was nothing. But then the chemo. I have heard people say the chemo is not that bad. I have also heard people say that each patient is different. Well fuck me if I wasn't the one for whom the chemo was the absolute worst.

They pump you with bags of saline to protect your organs, so I looked like the ugliest day of edema in the 17th month of pregnancy. It was like being that soggy piece of bread at the bottom of your sink but with a killer hangover plus the flu and food poisoning. I puked. I had diarrhea. Whatever. My pride went out the window when they inserted the catheter, not to mention when they put a diaper on me. Truth? You want truth? There it is.

Every piece of my body hurt. Because I had no stem cells (or little) I had no strength. Lifting my head to throw up was a feat. Opening my eyes hurt. And yet I couldn't sleep because I was in so much pain and was so nauseated. So I was just there. In it. Seconds seemed like hours and there was nothing I could do. There was no escape. Hyperbole? Not even.

But before you go kill yourself on my behalf please know that I have turned a corner. Yesterday they gave me my stem cells back, also called Day 0. Otherwise known as my birthday. And while that made me feel a smidgen stronger and less achy, I was still throwing up.

And now we are here at Day +1. I am back in my hotel room, now in total isolation. I have drank a few glasses of water and eaten one half of a banana, so there's progress. I can open my eyes without moaning; I can walk; I can watch Real Housewives; I can pee. They took the catheter out.

The same people who say that each patient is different also say that I will feel better for a day or two, and then dip down again as my immune system plummets. So there we have it.

If I have not responded to your texts, emails, FB messages or anything else, please know that they are keeping me afloat. Especially those people who send me pics of my kids. :)

Onward and upward! (And then downward and upward again).


Jen said...

I can't tell you how much I look forward to your updates, as I think about you every day. I know you'll kick ass. Keep on fighting, S!

Cathi said...

Thinking of you everyday. It might not be pretty but you're kicking MS' ass and you will get thru this! Sending you lots of love, saltine crackers and ginger ale. oxox

Anonymous said...

It's so good to hear from you, even though it's so distressing hearing how completely awful you feel. I check FB several times a day hoping to see your posts. I'm praying for you all day, and sending you healing and nourishing thoughts. Blessings, Susannah.

Mindy said...

Keep going Susannah, there is light at the end of this bloody tunnel. Sorry chemo hit so hard; really is a crap shoot. Am sending strong vibes your way from London. 😷

A Perfect Gray said...


Anonymous said...

Fuckity-doo. So sorry you're feeling so terrible. Like a turd rolled in hair. Sending you strength and hoping you start feeling better.

Mr. X said...

Dear Susannah,

There you are, 6,000 miles away, going-through your own private hell, as every cell in your poor body has been turned inside-out.


Unbeknownst to you, your posts are giving me much emotional strength. Certainly while you've been in Tel Aviv, but even going back to September 2014, when you spilled the beans about your diagnosis.

At that point, I had been having my own health issues (albeit far less severe), for more than a year. I started to feel like *I* was the crazy one, as Doctor-after-Doctor kept running test-after-test and telling me everything is "Normal."

"Normal?! Go F--- yourself!"

But, your example taught me to never deny that innate body wisdom that we all possess. Sure, I didn't go to medical school, but I KNOW when something is 'off.'

As you've undertaken your journey, I've continued on my own. It's time-consuming, frustrating, and there are still a lot of unknowns, but, because I'm not giving-up on myself, I feel more empowered.

Of course, it helps that I'm not going through it alone. I have a wonderful mentor that leads by example. Whenever I feel ready to give-up, I think of her.

For anyone needing inspiration, look no further than here:

Happy Birthday +1.

Mr. X

Susan C said...

Hang in there, Susannah! Thinking of you and breathing deeply in your honor, in hopes that it may reach you across the sea. Every day is one day closer... xo

Adam469 said...

Happy belated birthday!