report from bekah's mom

Rebekah had her stem cell transplant on mon- 13 bags of cells over approx 2 hours.
She has spiked several neutropenic fevers. She has severe mucositis, which is very painful and makes it difficult to eat. Pain and symptom management stopped yesterday for a consult and set up a PCA pump with fentynal for pain. Similar to morphine pump, this pump gives her a continuous drip of pain medication which she is able to increase by pressing a button. She got a decent nights sleep last night. Before transplant, she was walking a mile to a mile and a half a day.
After transplant til yesterday, she could barely stand up because of the severity of the pain. Today, she and her pump hope to resume their walking routine.

Diane and I have been here 24/7 except for the night before transplant when she was feeling good and had one of her favorite nurses. Bek encouraged us to go home and get a good nights sleep to prepare for post transplant.

We have her room decorated with pictures and cards from everyone- as well as with her bed linens from home- with her Aunt Bobbie's quilt and with Nan and Pop's friend Jackie Heinz's afghan- stitched with a hail mary in every stitch. We have taken over the room. Posters from her friend Darrel adorn the walls. Boston Red Sox hats in several colors hang from an iv pole from the ceiling. We will need a u haul truck to go home.

We are certainly not out of the woods yet, but for this moment-right now- she is not in severe pain, Diane is trying to figure out what she can eat- assembling a menu of sorts that will work with mucositis and Bekah is sitting up in bed eating oatmeal. just a short moment of rest- but we will take it.

thanks to everyone for the thoughts and prayers- keep em coming!
darlene

Stem Cell Transplant - Birthday day.

Three months of salvage chemo: check
Six straight days of high Dose Chemo: Checck
Receive stem cellls back: Pending Tomorrow

The last six days of chemo have been nothing short of hell. But in the grad sceme of things, who cares? It's OVER. I will never have a nother bad, lifted on an IV pole again to receive Chemotherapy.

My stem cell birthday - will be. April 21st, this monday.

We will still have a two week major hurdle to jump, after the cells are in tge body. They can form infection, some not -s0 - nice side effects, major fatige, loss of wieght, appetite and energy.

But!
From tonight on - no mo' chemotherapy for bekah :) '
And a small tiddy bitty birthday for my cells.in the good old morn.

All My love
To all of you,

B

Bekah - boo

It is basically a day before I admit myself to Upenn hospital for four to six weeks of isolation to rid myself of cancer, and the horrible memories attached to it. But before I start the last battle of this dreadful two year war. I find that most people lose themselves during this process. Sometimes it's impossible not to. Here you are, diagnosed, going through treatment, while the rest of this chaotic, but beautiful world keeps moving.

And you tell yourself, this is hard. too hard. You've lost your physical appearance. You'v lost your strength. You've lost too many friends to count. You've lost your job, you may have lost family members. Maybe a close relationship. Cancer cleans house in so many ways and angles you have no idea, unless you're living it. The point of this all, though, I've realized. Finally. After years of disease. Is not to focus on what you've lost. But what is left inside of you. So, for tonight. The first and last night of many that I am unmedicated. Without pain meds, nasuea medications, or sleeping pills. I wanted to share with you, what I have left inside me. That has nothing to do with cancer.

Then Tuesday, I'll begin to put these pieces together and commit myself to six more days of chemotherapy, and transplant.

Bekah

• I've played basketball (pointguard) from age five all the way through my sophomore year of college.
• I have the tiniest ears, an adult could ever have.
  
• When I drink white grape juice it makes me think of singing hebrew blessings in temple with my family.
  
• I worked in Domestic Violence Shelters in Philly and Boston, in HS and during my Freshmen summer after college, I helped format the Social Work program at BU for their DV program
• I'm a reform Jew. And Irish. I've got the curly hair (when I have hair!) and freckles (kisses from the sun)
• If I really really care about someone, I tell them I love them from the moon, to the stars, and back again. These people are in a selective group ;)
  
• If I hadn't of been diagnosed, I would not be as close with my Aunt and Uncle, or my mothers, as I am now.
  
• I have the most horrid feet in the entire world (ask my past roomates)
  
• I have a huge soft spot for Frank Sinatra and Etta James
  
• Some of the best and most relaxing months of my life was when I was free, in Jacksonville, playing football in the ocean, fires on the beach, and in love with my classroom of third graders.

• As a reform Jew, I believe in my religion, heritage, and past. But, not so much on the G-d end of things, or a higher power.
  
• I have lost a lot of people. And have learned that it's okay.
  Sometimes, memories are good to hold onto.

• My favorite days of the year, are the first weeks in Boston when the colors change in the fall, and baseball season is in full tilt.

• From a very early age, til I moved out for college I had the poster 'A woman without a man, is like a fish without a bicycle.' I still have it.
  
• I have taught hebrew school in three different states, but have yet to go to Israel. And, am going to attempt to go this year.
  
• I have wanted to be a teacher, forever. And always, in an inner city or at-risk-youth schools.
  
• I get a high from sending out packages, to make them smile.
  
• I used to have a passion for shooting black/white night photography
• I have been brought up in a lesbian household, with a sister and a brother, and would not have changed a second of it.

• I've been to the Jersey Shore every summer, since I was born. It's the safest place, I have.
• When I was very young, my parents used to call me Bekah-boo.
  

Cancer destroys a lot of things, in others' lives. Friendships, relationships, maybe even physical identities. But there are pieces, especially of me, that I always attempt, even though it is so easily forgotten. To, remember. There are pieces, to always put back together once the battle is done, and you begin recovery. These are the things, that cancer can't take from you.

It just can't.

Have a wonderful week, loves.

I will be admitted into Upenn Tuesday Morning (April 15th) to receive a pick-line, then my first dose of chemo. This chemo will continue till Sunday (April 20th). Then a day of rest.

Hope you will all enjoy the sunshine for me,
as I will be in isolation for 4-6 weeks.

All my Love,
B

Today I am grateful for: tuesday-sunday being the last days of chemo treatment
Today I smile for: baseball season truly beginning
Today I miss: having my own classroom and past students.

Strength

A strong woman is a woman bleeding inside.
A strong woman is a woman making herself strong
every morning while her teeth loosen and her back throbs.
Every baby, a tooth, midwives used to say,
and now every battle a scar. A strong woman
is a mass of scar tissue that aches when it rains
and wounds that bleed when you bump them and
memories that get up in the night and pace in boots to and fro...
 

I am incredibly happy to tell all of you that your wonderful positives vibes, prayers, and thoughts have contributed so much, within the last week. After three weeks of prepping for stem cells, and attempting to collect. I am pleased to let you all know, that we've hit the 'magic' number, just barely. But enough, to move on to transplant.

A strong woman is a women who craves love
like oxygen or she turns blue chocking.
A strong woman is a women who loves
strong and weeps strongly and is strongly
terrified and has strong needs.
 

After a very disappointing week, last week. One of my dearest friends, John. Came to visit me for the weekend. This man, has watched me battle through my kidney disease, my first treatment of cancer last year, and now transplant this year. He is truly an angel in disguise. And means the world to me.



I'd like to believe it was all the drugs working in my body, or that the timing finally came for my stem cells to finally leave my bone marrow. But after a relaxing weekend, of spending time with one of my oldest friends and smiling LOTS. This past Tuesday, I had finally collected enough stem cells and told, that I will finally begin the stem cell transplant, I've been waiting for. We will start my first day of my LAST DAYS of chemotherapy on Tuesday, April 15th. Therefore, after five/six consecutive days of chemotherapy, I will then receive my stem cells back into my system on Tuesday, April 22nd. Finally, we begin approaching the last hurdle of this incredible challenge.

A strong woman is strong
in words, in action, in connection, in feeling;
she is not strong as a stone but as a wolf
suckling her young. Strength is not in her, but she
enact it as the wind fills a sail..

Although the ICE, collection, and preparation towards this step in treatment has been a rollercoaster for many, besides me and my family. I can not even begin to tell you what transplant could entail. The side effects, the pain, it is all too much to think about or to even put into words for all of you. A truly ugly side of treatment, that no one deserves. So instead of divulging the details of what my 25-30 days of isolation will be like in the next month. I'd much rather ask of you to do something for me and my family.

What comforts her is others loving
her equally for the strength and for the weakness
from which it issues, lightning from a cloud.
Lightning stuns. In rain, the clouds disperse.
Only water of connection remains,
flowing through us...

Transplant is about an entire month of isolation within the hospital. And, it is my feeling as well as my family that you at all times have a medical advocate at your side. To help us succeed in this, with the knowledge that Upenn is pretty far away from our home. I ask if you would like to help our family at all, to please please, send two specific gift cards that will basically save my mothers during this time.

For me: Best Buy Cards & Borders. Or send your favorite DVD to my house. I'm also, diving into Poetry, so if you have a favorite poet. Send him/her my way. Attention span is difficult during these weeks of treatment; therefore, poetry, will become my best friend. :)

As well as...

Gas Cards: Sunoco, Mobil, BP, and Lukoil.
and Starbucks cards!

My mothers have literally been keeping me alive during these past few months of treatment, and they RUN on coffee. Trust me, a five dollar donation. Will make them smile, which will in turn make me smile as well.

Sending all my Love
to all of you.

Strong is what we make
each other. Until we are all strong together.
- M. Piercy.
 

-B

bekah's kevetch

Sweetest Friends and Family,

I apologize for not updating, or detailing the last few weeks. It's been an incredibly draining, collection-limbo-hell. Something I was not really prepared for. When people speak of Stem Cell Transplants. The most difficult parts of this treatment are usually the ICE and BCV chemo, as well as the days after you receive back your stem cells...

Little did we know collection would be so difficult. Or, that it may not work.

To just quickly recap on the last three weeks

• We have driven to Upenn, leaving between six am and 9am (one hour - two hours during rush hours) every morning for the last two weeks. And usually are there till five pm. Getting us back to the house between six and eight at night.
  
• I have been injecting myself four times a day for the last three weeks, with neuprogen, hoping that my bone marrow will produce enough stem cells.
• The nueprogen has caused difficult side effects, most I chose not to share with you.
  
• The surgery to collect stem cells was not only a dangerous one, but painful.
  
• Pain killers are not even touching the pain, that my bones and surgery have left me in.
  
• After a full week of attempting to collect, I am hardly near the minimum number of cells to proceed with transplant.
• We are attempting next week again, to collect, but if I do not reach the golden number by Wednesday. Which does not look likely. I am left with two options.
• Go for another round of chemotherapy, and start this process all over again.
• Stop treatment, and accept that this is all my body can do.
  
• I have not slept in weeks.
  
• I have not returned emails or phone calls in weeks.
  
• Me and my family will be stuck in this limbo until we know if we can go forward with transplant, or until I make a decision to continue treatment or not.
  
• Blood pressure has been significantly low, with heart rates incredibly high, as well as ankles beginning to swell.
  

I apologize that this post, is on the somewhat negative side. I have tried, to hold off until I had better news. However have received so many emails and phone calls, I needed you all to know what was going on..

Much love to you all,
Still fighting,

B