SAHA update

Hope everyone had a lovely holiday. As for me and my family we spent the  (two weeks) & the week of Christmas in NYU hospital as I was admitted after my scan on the 21st due to dehydration, off liver enzymes, weakness, weight loss (107lbs),vomiting, high kidney functions and the list goes on.

The experience at the hospital to say was incredibly horrendous: our first night our floor did not have any heat, therefore all of us sleeping in our coats, hats, and gloves. On top of it, we had no idea we were going to be staying at the hospital for a week which equals no clean clothes, toothbrushes, or even showers in the rooms. Personally, I'm going to erase these memories from my mind, and focus on the one major positive that did come from going to New York this week. 

The scan with this drug reported a thirty percent decrease in my disease. So, obviously, we cheer for that. 

After fluids, antibiotics, head scans, liver scans, whole body scans, and running of cultures, NYU finally released me. I'm home for now, trying to rebuild my body. Today is the second day that I haven't had a fever, and the first day I haven't thrown up (lets keep our fingers crossed).  I go back to Dr. O'conner on Wednesday morning to hopefully clear up this entire mess. I've been off the drug for about two weeks -- I'm allowed one more week off.

My hopes? O will help me figure out how to have quality of life on this drug since I've been bed ridden for almost two months.  That there will be a dose reduction, somewhere since I've lost so much weight. And that somewhere along the line.. I get to return to my life in Boston. 

Hope with me.

Sending Love,

B

Welcome & Thank you...

Now that I've switched back to private, I have the wonderful opportunity of being more myself, as well as sharing more detailed information. I know you are all excited :)

Before I continue though, I just want to thank all of you who did write to be added, and the incredible and beautiful support you sent through all of your e-mails. I am always, always, blown away by how many people are out there that share a connection with this disease, or just simply are cheering from different parts of the country for successful treatment. I thank you, I'm grateful for you, and all of you, your e-mails, comments, phone calls, gifts sent in the mail (JessieO), and heartfelt words of encouragement.  When I feel as though I'm in this dark place -- and I know there is light somewhere, it is always the kindness of others that helps me see past everything that is blocking my vision.  So, again, thank you. I wish I could personally write back to each one of you... some day I hope to, but please realize your small act of kindness truly helps me focus and dust myself off.

As many of you have suggested, I am trying to just 'be' in the next few weeks. I am focusing on rebuilding my strength emotionally and physically, and hope that the new year leads to a more balanced life-style and mindset.  I hope it is for all of you as well...

The next news (scans) will be the week of December 21st, and we're obviously hoping for good news that this new clinical trial is working -- but if not, we will figure out something else. However, we'll cross that bridge when we get to it. Luckily, classes end next week, and although I'm sure I'll have to take some extensions at this point, I'm okay with this and feel the need to pat myself on the back for still standing while juggling four classes, interning, and treatment.

Lastly, for a treat. One of my very favorite Lesley loves sent me this a while ago, but, it just seems like a perfect letter to share with all of you. Plus, it makes me smile. This is F. Scott Fitzgerald and a letter to his eleven year old daughter during summer camp. Hope you enjoy it.


Dear Pie,

Things to worry about:

Worry about courage
Worry about cleanliness
Worry about efficiency
Worry about horsemanship
Worry about...

Things not to worry about:

Don't worry about popular opinion
Don't worry about dolls
Don't worry about the past
Don't worry about the future
Don't worry about growing up
Don't worry about anybody getting ahead of you
Don't worry about triumph
Don't worry about failure unless it comes through your own fault
Don't worry about mosquitos
Don't worry about flies
Don't worry about insects in general
Don't worry about parents
Don't worry about boys
Don't worry about disappointments
Don't worry about pleasures
Don't worry about satisfactions

Things to think about:

What am I really aiming at?
How good am I really in comparison to my contemporaries in regard to:

a.) Scholarship
b.) Do I really understand about people and am I able to get along with them?
c.) Am I trying to make my body a useful instrument or am I neglecting it?

With dearest love,
Daddy
(August 8th, 1933)




Sending Love,
And a very Happy Chanukah to all my favorite jews :)


B.

I don't feel strong, when my body feels weak.

I think most people can sense by my writing that I haven't been in the most 'joyest' of moods recently. I know that's okay, but it's something that I try to avoid. I always believe that positive thinking and our mentality is a huge part of fighting this battle.

This month I was losing. and I'm trying to come back.

I had too much on my plate. I had too much on my plate for a normal 'healthy' person. Yet, I continually attempt to live a superwoman life, trying to prove to others and myself that this illness does not affect me.

Well, unfortunately, it does.

I've been in and out of the hospital for fluids and blood. Not wanting to take care of myself as much as I normally do, and detesting that I have to be on a trial again, seeing my weight just slowly fade away. It feels as though all the hard work of my summer and fall, eating, and yoga-ing has just been flushed down the drain. I'm tired. I'm tired of traveling. My Hemoglobin is low. The fatigue is bad. And, I find myself just never getting enough sleep.

I hate to give into this disease, but I feel as though I've lost some of my spirit... somewhere along the way. I admit, it is usually this time of year, three years to my diagnosis during the holidays, right when the chemo started for transplant two years ago, and just about a year ago this month the last clinical trial whipped me so hard, I could not even get out of bed. The pattern is frightening, and the holidays are shadowed by these treatments, year after year.

The thing is, I'm trying. I'm battling myself, and trying to get into a positive mindset. Unfortunately, a lot of personal things have not turned out as I'd hoped (deaths, ending of a relationship, timing of things), and I am having to take extra time off of my internship because I need to really focus on rebuilding my body, eating, and drinking.  Everyone else in the world seems okay with this -- except me. Why after three years, am I still insisting that I can do everything a healthy person does? Without any extra help, time, or accomodations? Why do we feel as cancer patients that we need to endlessly prove that we are the same as everyone else?

I feed poison to my body fourteen nights, out of twenty one days.

Do I get to feel weak already? Is it okay not to keep up with the healthy 25 year olds anymore?

Do I get to feel defeated and not want to DO this anymore?

It is such a difficult thing -- when off treatment, I am sky high happy and relish in the moments without chemotherapy. But, as soon as I begin a treatment, my mind follows the weakness of my body.  If I am throwing up everyday - is this worth it? If I can't get out of bed to see friends and attend school or internship -- is this worth it? And finally, can someone please come here and tear up my superwoman cape because I am so tired of trying to be normal..

I would love any words of advise or encouragement, as I know I need to start thinking on a positive note or none of this will be successful in the interim.

Sending Love,

B