Saturday, January 10, 2015

The Pathetic Post (Possibly 1 in a Series, We'll See)

There is only so much to be said about life inside of a white hotel room. 
It's funny how I can be so painfully bored when there is so much huge going on. But this room. White walls and white bedding. I eat hard boiled eggs and toast because I am not supposed to have take out food or raw fruit or veggies. Eggs and toast and bottles of pills in Hebrew, not quite sure what they are. I am supposed to stay away from people so I do. I stay in my room and read, sleep, watch bad tv. My dad comes over and we listen to Serial and put together the jigsaw puzzle, all the while my stomach is churning from the Campath possibly, or more likely from the fact that tomorrow I have the Bone Marrow Aspiration, then 40mg of Fludarabin and 60mg of Cytoxan.

I tried to do yoga today but the stupid grippy yoga socks I brought in lieu of a mat don't work and my feet kept slipping out from under me. 

I feel sorry for myself. I am not proud, but I had quite the crying jag yesterday morning (or was it today?), thinking why me, I just want my life back, this is all so wrong, me in a hotel room in Israel about to kill my immune system when my babies are on the other side of the world. Just typing those words gives me a lump in my throat so I sit up straighter, blink it back. This is temporary. Soon I will be home wishing for quiet, wishing for white.

Oh for fucks sake, I am such a whiner! I hate whiners. I hate this. I hate that I have nothing else to report from my white room other than hard boiled eggs and a puzzle.

Here. Here is my bed covered, of course, by the quilt that Zoey's Girl Scout Troop made me. Each square is designed by a girl with a funny drawing or a message on it. And next to that is a shirt that Zoey gave me of hers which I hold onto while I sleep.
And here. The other side of the room (with said puzzle).
And that's...that. I am sorry for sounding so sorry. It's hard when everyone tells you how brave you are, what a warrior, when all I really want is for all of this to go away. But the closest I can come to having it go away is to go through it, so tomorrow morning they will stick a very large needle into my hip bone and collect stem cells, and then I will have high dose chemo.

I honestly don't know how to end this post without sounding like a hopelessly pathetic person that you roll your eyes at, so please know that I just need to go through this, all of it: the whining, the fear, the chemo, the nausea, the feeling sorry for myself, the exhaustion...only to come out the other side.



Molly said...

Of course you do.
Let it all out girl, this is your safe space.
Good luck for tomorrow x

Anonymous said...

Whiners are people who complain when they have it good and/or are coping with nothing much. I'd say you've earned a little whining...and it's not whining.

Cathi said...

Whine it out - you're dealing with quite a bit you deserve it! Keep your eye on the prize and that is kicking MS ass and getting home to your family ASAP! lots of love hugs and prayers sent your way! xxoo

Meredith said...

The quilt looks gorgeous. Love and prayers for you

Aunt_B said...

Cry, bitch, scream, vent, do whatever you need to do to help this craziness go by quicker. I think you more than deserve it! Even bad asses are allowed to have an off day every now and then. Remember what the wise Shrek says: "better out than in". (I have a feeling that saying may also be appropriate regarding all of the hard boiled eggs you are eating). Thank you for sharing this journey with us.

Mindy said...


Mindy said...

Okay, so that line of sad smiley (oxymoron?) didn't work! Moan away Susannah, blogs are all about us following the good and the bad. I think the white room must have a negative effect too, as Kate mention it a lot as well. Have you got an iPhone or iPad with you? Am very happy to challenge to the a game of cyber Scrabble?

Mr. X said...


It's now 2:47 AM on the east coast and 9:47 AM in Tel Aviv. I hope you were able to rest last night.

Anyone in your situation would almost certainly be experiencing the same spectrum of emotions. If they said otherwise, I'd suspect they were lying. I mean, c'mon, it's scary.

Perhaps you don't feel brave, because you didn't see had any choice in the matter? That is, maybe you felt you *had* to go through with it.

But, that's not really true, is it?

You could have stayed home and "fought" (a term I don't agree with) the condition with more conventional methods. That would have probably been a more comfortable option to choose, as you would be on familiar turf and have your family and friends close.

But, you asked yourself "Is that going to be enough? Will I be doing everything in my power to get well and be there for my family?"

So, to give yourself the best chance, you made a huge mental, physical, emotional, and financial commitment; left everything and everyone comfortable and familiar; and traveled some 8,600 miles to a place where you don't speak the language; and placed yourself completely in the hands of total strangers.

Is that brave? Yes, without question.

But, do labels even matter? There's no judgment here, Susannah. Just people who care about you.

Wishing you much luck and success today. You are in our hearts and minds.


Mr. X

kacey2004 said...

With tears in my eyes and my throat aching and dry I write this message to you knowing that it will be a speck of comfort,no,that's probably expecting too much,but hopefully at the very least a distraction from your torment.I wish I could say all those typical lines that people say "This is all happening for a reason" or"This too shall pass" or the ever favorite"That which does not kill you will make you stronger"and not feel like a fraud,but I know I just cant.Because saying that to you would be an injustice,knowing that someone with such a strong spirit and appreciation for life,who devoted so much time and energy to doing so much to take care of her family and living and loving every moment of life is such a shock and surreal moment in time,pat answers will not do.Its like taking a beautiful field filled with flowers and dumping nuclear waste on it.At first you wouldn't be able to accept what you are seeing because it would be so contradictory.Why would that happen?Why would this happen?Its not fair.That was how i felt when I first read your blog about your MS.I just couldnt accept that what I was reading was real.I had to step back and just take it in.I know I am just another reader of your blog but I cant help but care as any fellow human being should for another.And having been privy to your personal journey through life and motherhood by way of your blog its hard not to feel like you are in a remote way a friend.I don't know how long I have been reading your blog exactly,and im embarassed to say how I came upon it,but I will.My best guess would be about 4 years ago when I was searching through the internet to find a young picture of Matt Dillon,why you ask did I need to see a young picture of Matt Dillon?Well because I wanted to show my daughter that Matt Dillon was indeed very good looking long ago.I vaguely remember that we were watching a movie with him in it and saying how I had had a crush on him and she gave me a ewww yuk face.So of course I had to prove that I did not like ewww yuk guys.Although,he really doesn't look bad or ugly now but to a 15 year he's old and gross.So in my search of a cute,young Matt Dillon picture I found one that was on your blog.I went to the page and somehow got sucked into reading the blog entry with the Matt picture and well the rest
is history.I was hooked.

kacey2004 said...

Part 2:
And ever since then I have looked at your blog like a magical treasure,a special treat that I look forward to whenever I am lucky enough to go there and find a new entry. You've made me laugh,cry,think,look at things differently,work at being a better mother/person,see new perspectives,and so much more that I cant even explain it in words.But I love your blog and the fact that you have been so open and honest and let us have such a raw look into your life,your family and sometimes even your soul just astounds me with your bravery.

I know you said people are saying you are so brave doing what your doing now,and I certainly wont say its not,but brave doesn't feel like the right word.Because what your doing is fighting to survive and live and to me that's instinct,that's life.I think you have always been brave in so many other ways,in how you live and love and share and care and give of yourself to so many.Yes you are brave but this,this is something different.This is beyond brave.Because at least with bravery you see your enemy and you gather your strengths and face it even though you may still be afraid.But this,this is walking off of a cliff into an unknown abyss and not knowing what your going to face.I think that goes beyond brave,because what your doing is something indescribable with words.I cant end this without saying how inspiring you are to me and how even though this crazy unimaginable thing is happening in your life right now,I cant believe that their isn't a greater purpose in this happening to you,that right now doesn't make sense but one day will.I am thinking of you all the time and sending you positive energy and love.Stay strong,stay golden.Keely