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

Collection

After a very uneasy week and weekend of waiting for counts to go up. And being told from several doctors perspectives that there was a good chance of being unable to collect. Which would mean no transplant, or another round of chemotherapy.

I have chosen not to post, til good news arrived. And spare all of you the drained emotions of me and my familiy. To think -- I would go through three rounds of ICE, and to find out that the chemo damaged too much bone marrow to collect. Or, to find that I would need to endure another round of chemo before BVC chemo and transplant.

It was all, a little much. And with the flooding of phone calls and emails.

I decided to post tonight, to give you all a little glimpse on what was going on.

After two whole weeks of giving myself neuprogen shots (white blood cell boosters, four times a day which results in incredible amounts of bone pain, and heading into Upenn every single day of the week for the last seven days...)
Good results, finally came in later this afternoon. We finally reached the '6' that gives us the green light to proceed with surgery and collection

So, we cross our fingers, legs, toes... that all goes smoothly tomorrow after a small transfusion, the heading into surgery for a line to be placed in my chest (for them to collect cells from), and then we pray - or send positive vibes, or whatever you and I must all do for good thoughts. In hope that collection goes smoothly tomorrow, and I collect a decent amount of stem cells.

For this to be one of the most 'easier' parts of treatment, in this six month process. I have to say... that I truly guess, nothing easy is ever worth fighting for.

Hope to report by the end of the week, that I've collected enough stem cells to proceed with transplant. Thank you for all of your caring thoughts, and concerns the last week. I truly appreciate the support.

- B

Because he wanted to laugh

He knew that the days ahead would be difficult. There were questions to be faced and a plan of action to be prepared...

It seems that even in the medical world, when you attempt to plan things. And hold onto them, plans, preparation, life, can change in an instant. You learn that when you're diganosed with cancer the first time. You tell yourself, 'wait, this is not suppose to happen right now.' You're suppose to be living, laughing, working, enjoying life without pain.

So you have to overturn that thought process. You have to learn, when you are diagnosed for the second time, how to survive treatment, cancer, and live. While most people might hide or take cover during treatment. I've learned that I must take the days, in which I don't feel pain, or I am able to get out of bed. To enjoy them. To live and laugh and cliche as that sounds. To have a life..

He knew that he should think about it. He knew also, that he would not think, because everything was clear to him already.

However, when you begin treatment, and certain dates are ingrained in your head. You hold onto them. Tightly. For cancer patients, treatment and schedules are the one thing we do hold onto, at least for me, it feel as though I have some sort of control.

So when my doctors assured me, that this week we would head into stem cell collection on the 26th which would include a small surgery, and a collection of blood and stem cells. In which later they seperate the blood from cells and freeze them util I am ready to receive these specific cells back into my body (which will be my 'transplant' day). And it would take three to four days to then collect these specific cells. Completing this part of treatment by March 26th...

I felt certain. That this is how it was going to happen. This was how it was planned.
It was a set date. A date I could hold onto.

Unfortunately. I walked into Upenn this morning to see if my stem cells were ready to be collected. They have to reach a certain 'peak' to collect a significant amount for my transplant. The number we shoot for is 6. Unfortunately, for me and my family, my number was zero. To say that this was a disappointment would be an understatement. And with that comes fear, fear of being unable to collect cells after three rounds of ICE. In which, I would ultimately, not be able to proceed as planned for the transplant. Fears, that have not even been discussed with my doctors. In addition, I am literally kicking myself for expecting things to go on time, or as planned. As a cancer patient -- this is one of my biggest lessons that I've learned.

because the plan had been set long ago..

So, as the roller coaster continues. I sit here. On a Monday evening. After enduring my third round of ICE, blood work, and a full day at Upenn. To find out that most likely, we will not begin the collection process til next Monday (March 31st) . (We will go back in Wednesday (3/26) and Friday (3/28) to double check the numbers though, in hopes that I will at least reach a 4 or 5, sometime this week). This means, the April 8th admission for transplant will not happen til a week or two later. For now, starting dates are all up in the air, dependent on collection.

and because he wanted to laugh...

You learn an incredible amount of coping mechanisms and lessons throughout three diseases, two of which focus on cancer. I would by lying if I told all of you I was not upset by this news. But I would also be lying, if I told you I was not originally upset that I was diagnosed with cancer. And as always, we come to make a choice somewhere along the line. Either, spend your energy and thoughts, wallowing in anger. Or, take the time now, to live, laugh, and focus on the good.

When specific dates have been set for collection.
I will be sure to send them your way :)

All my Love,
to all of you.

B

He knew that the days ahead would be difficult. There were questions to be faced and plan of action to be prepared. He knew that he should think about it. He knew also that he would not think, because everything was clear to him already, because the plan had been set long ago, and because he wanted to laugh. - Peter Keating, The Fountainthead, by Ayn Rand.

Goodbye Sweet ICE...

"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror, I can take the next thing that comes along.'

You must do the thing, you think you cannot do"
-E. Roosevelt

And ohh baby, we just did it!

The family and I are finally home after our last infusion of ICE chemotherapy. And officially are halfway done treatment!

So..Goodbye, sweet ICE... goodbye forever.

Nothing poetic or expressed in words could ever capture the feelings within me. Except to know, that I am without any cancer in my body, and we halfway through treatment. So, instead talking about the future rounds of chemo, and transplant. you get another great bekah smile :) Because we truly need to celebrate these small but absolutely beautiful victories in this mess of a disease.





Don't be fooled, I do not look like this after treatment. But this is how I FEEL right now. So i wanted to give all of your a sense of my happiness and accomplishment for finishing up this last round of ICE.

I will update you all soon, on the next steps of the stem cell collection and transplant procedure. But for now, please just smile with me, and understand what a HUGE accomplishment it has been to complete three rounds of the most grueling chemotherapy out there. And know it was because ALL of you were cheering me on. So please keep sending good vibes that I stay out of the hospital during this round. And keep thinking of this cute little body, NOT having any cancer in it.

I kinda like the sound of that :)

Sending allll of my love possible,
to all of you.
My incredible army of cheerleaders. Who get me through, everyday.

Love,
B

Today I miss: my nan and pop
Today I smile for: ending ICE treatment
Today I am grateful for: the entire Hale family, and how much they make me smile day in and day out.
and
Today I am incredibly, incredibly appreciative of : my beautiful, beautiful, courageous mothers.

Round Three!

After clean scans on Thursday, and spending time with my two incredible friends who came up to see me this weekend. As well as my brother coming home from college. It's been a wonderful few days. Almost too wonderful, as I sit here in the hospital bed, awaiting the inevitable.

But here are some fun photos of how wide I was smiling this weekend!






As for chemotherapy, the moms and I were called in at one. It's now almost 8:00 and I haven't received anything (they're a bit behind tonight it seems). Computer systems are shut down, and we're hoping that I'll at least get my first dose of chemo before midnight.

Although, I'm a tired pup. And my body is getting weaker from this treatment. It will feel so nice on Friday to wake up from this horrid, freezing, dream of ICE.

Here's to Round Three, and all it entails.

In addition, I ask you to please, please, send your warmest wishes to one of my best friends, Darrel. He is having a node biopsied on Friday, that has recently lit up on two dirty PET scans. We pray it is nothing to be concerned about, but send positive vibes towards Cincy, OH on Friday morning.

All my Love,
to all of you,
B

Today I miss: having a normal 24 year old body.
Today I smile for: the last bit of ICE
Today I am grateful for: being cancer-free.

A perfect moment

There are very few moments in my life, where I would say they involved perfection. Or anyone's life for that matter. I think to myself over the last year how much cancer has caused pain upon my family, my friends, me. I think of how this disease has left such a sour and bitter taste in my mouth. But, in contrast, we must realize without those moments, we would not be able to acknowledge how incredible other moments are.

perfect, sweet moments.

• Tuesday...
  

On Tuesday, the 4th, I had a scheduled PET scan. A PET scan determines the metabolic activity taking place in your body. In other words, it reveals how much cancer is still active or not active. Once we received the PET results, it determines whether this form of treatment is working. If these last two months have been worth it.

• This morning...
  

I sat in a fixed corner, across the room from my mothers as they looked out at the sights of Penn tower, and I connected eyes with my lovely nurse practitioner. She knew, as well as I, that we have been desperately waiting to hear this news. And quietly sat down next to me, discussing the results. And what they revealed. I gave her a hug and walked over to the two women who have literally carried me through the last two months of treatment. And watched me at my ultimate worst and weakest.

Looking at both of them, I repeated what was said in that lovely whisper.

I am cancer free.

There is no sign of any disease.

The PET is completely negative.

To be honest, I put my arms around both of my mothers, and cried. I couldn't stop. With the help of both of them, and so many of you. I have beaten cancer for the second time. And I will hold onto this moment, in a deep place within me.

• Tomorrow, and the next day...
  

We still have a very long road ahead of us. However, for now please enjoy this news as much as I have. It is yours, as much as it is mine. For now, my family and I will bask in the glory of the these results, rest, relax, and prepare for round three of ICE, which begins Wednesday, March 12th. And ever so gently, take in, this perfect moment.

All my love
to all of you

B

Discharge

Sweetest Friends,

I was brought home last night,
today we head back to Upenn this morning for a pulmonary exam and more testing.

Just wanted to leave a quick note that the fevers have broken.
Counts are beginning to rise again.
And we are (knock on wood) out of the danger zone for this round of chemo.

Will be updating soon, with more thoughts, and more energy.

All my Love
to All of you.

B

Today I miss: sleep
Today I smile for: amazing oncology nurses
Today I am grateful for: family. family. family.

fever

Report from Bekah's mom-darlene

After a day of balancing pain medications and other pills to attempt to reduce Rebekah's crippling bone pain of the last week. Rebekah developed a fever yesterday, the high was 101.2. A little nerve-wracking since it spiked from 98.0 to 101.2 within a half hour. On advice from her oncologist, we took her to UPenn Emergency Room. She was admitted to the hospital late last night. After antibiotics, fluids, x-rays, her fever finally became stable. After a long night in the ER. She is neutropenic, which means she is very susceptible to infection. And physically, very weak. The docs are unable to identify the source of infection at the moment. Her temperature seems to rise and fall a bit since last night. As we try to keep things stable. Her Red blood cells are also low- so she will receive a blood transfusion this am.

please send positive energy her way. we will be here for a few days. trying to maintain pain, a good temp, hydration, and to clear out the infection.

-Darlene

Stars

All of us are in the gutter, some are just looking up at the stars. -
O. Wilde



Yes. I am here.
Looking up. promise.

Round Two has been better than Round One.
This is all we care about and are now focusing on at the moment.

IV fluids and zofran have been infused from Sunday and will be received through Sunday for two hours every morning. This is through a port access (at home) to maintain good hydration, blood flow, and avoid re-admittance back into the hospital. I am now found around day nine from chemo -- counts will begin to drop this week. As we head back into Upenn tomorrow morning for fluids, blood work, and a Lupron shot. To surpress menstrual cycles during treatment.

The Lupron shot is done during this process to avoid blood release during treatment which, in females could technically be a cause for concern since blood levels are liable to be low tomorrow. Women have this choice during ICE and transplant to avoid break-through bleeding and complications. Lupron has also been put through trials to determine if this shot can continue on a women's fertility during this cancer treatment. However, it is still in the early process of research.

The last few days I have been lost between different pain medications, IV poles, eating healthy, and, to put it bluntly cancer. Coincidentally, I had three different at home Nurses drop over materials, to hook up the IV's for morning infusions. I feel like sometimes, when I end up talking to these women... I see heroes.

Women who have worked in oncology and other medical areas, to fulfill such a a small but wonderful gesture. Giving ME fluids. To keep my body moving. I always listen to where they studied or, where their families were from, I want to know them. I want to know they know a part of me.

As you begin to battle through the trenches of your own cancer treatment. You slowly realize the difficult truth in connections you lose over time. But, in turn, those you gain from your journey and experience as well. As treatment becomes more isolated you appreciate these small interactions. It is no longer a nurse, who came to your house today for fluid. It is Galina, daughter of ten who supports four daughters and wants to make a difference in the world... Or Anna who just had to say goodbye to her sister who suffered from MS for years. And is now finally back to work.

Or is is them knowing me. A once was- third grade teacher...

Without them, I wouldn't be here,
looking up at the stars.

Without them. I wouldn't be here,
beating this cancer.

- B

Finally home..

After falling a few times in the hospital,
with chemo going accordingly (no complications as of yet)
we hope that I'll be tucked away in bed for a few short days
to gain some strength.

all my love
to all of you

b

i miss my: focus
i smile for my: amazing brother and aunts and uncles who
showered me at my home with bagels and lox this morning.
i am grateful for:my moms,
I would have never gotten through this one with out them.

Round Two

It seems the mothers and I have started getting used to the hospital life once again. After waiting all day to be called into Upenn, we were finally summoned at 5pm. And were admitted around 7pm. We only packed about 3 suitcases full of clothing, food, dvds, and other fun stuff for the next four days. I can't imagine what we'll be loading into the hospital during transplant ;)

It is now just about 10 o'clock, and we've decided to start the 'E' portion of ICE tonight. Then tomorrow morning, bright and early I'll be hooked up for the 24 hour combo, and if all goes well we'll top off my hospital stay on Friday with my last dose of chemo.

We anticipate that I will stay an extra day to tapper me off from IV meds to oral pills this time around, to prevent any complications later on in the next week.

Can't thank you all enough for your words of encouragement as of late
and cards, thoughts, calls, and emails of love and support.

I apologize if I have not responded, but know
please know - I hear each and every one of you.

To my Florida loves, Curley Teachers, and Lesley Family. I will always be forever in debt to your generosity and beautiful souls. You have made this difficult time, easier for me and my family. I could never thank you enough.

Sending all my love,
to all of you

B
---
Today I miss: my energy
Today I am grateful for: my mothers and their stubborn personalities,
i have yet to be alone during my hospital stays.
Today I smile for: Mrs. Burke, her bon bons.
and always having the ability to make me laugh.

A little cancer secret

During this two year battle with cancer, I would like to think I have learned some lessons from my past treatment, to bring towards this one.

A major obstacle I faced last year, and begin to face this year as well. Is to look sick at age twenty three or twenty four. In our young 20's we should be vibrant, and beautiful, and not give a second thought to illness. But unfortunately, for some it happens. It has happened to me, and it happens to others I care for, very deeply as well.

Most would think, you can easily shrug off the 'sick' look. Say 'who cares? it's just hair, or eyebrows, or eyelashes.' But alas, it is not the shallow loss of these characteristics that stings the cancer patient, it is the loss of normalcy, the grief of once was, the knowledge that we were somewhere else a year ago, or six months ago. It is the loss of a past life whether it be a healthy mom with five children and a stoic husband, a brave woman with a beautiful partner and fur kids, a young musician attempting to start his life over in a new city, a father with two adorable daughters and a beautiful wife, or a young teacher, desperate to know when she'll be able to have her own classroom again.

By looking this way in the world, we have a choice to make. Never an easy one at that though. Last year, I fumbled and grappled with my physical appearance, understanding what my appearance meant. It meant, I was receiving chemotherapy. It meant, I had left my life in Florida (and now in Boston) to receive treatment. It meant, I had given up my world to fight for my life. It meant, I am hoping for a cure.

So, as the rest of the outside world may see us as weak, or sickling, and possibly unattractive. We, as patients and survivors, and even caretakers have to understand the magnitude of what this outer appearance truly is.

Last year, I saw myself, hairless, ill, and dreading the outside world for fear of judgment. Now, after time and a second diagnosis, I see myself and other cancer patients and survivors for what they really are, when going through treatment...

warriors.

We have not only let go of our physical characteristics, but we've let go of a life - in some way or some form. And in turn, we are fighting for a new one. If that means, we do it without hair, or eyebrows, or physical strength. So be it.

To me, that is not weak.
To me, this is the strength of a cancer patient.

---

The sun is shinning, and this cancer patient is finally ready for round two of ICE.
I will be admitted Wednesday afternoon, and be held at Upenn till Saturday afternoon. If any complications arise, you will be updated.


oh.. and one last picture for my favorites. :)

All my Love
to All of you
B

The clearest Joy

The clearest joy
is the ceasing of great pain.
When the iron bell rises from the head,
when the clanging shock subsides along the nervews,
when the body slides free
like a worm from a hook,
how the putrid city air
bubbles in the lungs
Light glides in honey over the eyes.
The austere ceiling is made of meringue.
The body, uncoils, uncoils
wonderfully empty like a lily.

Breathing is dancing.

Dumbly and wholly
like the basil plant on the sill
I lift my nose into the sun.
- m. piercy
-----
The clouds have started to part, counts have begun to rise. And I've finally found myself able to get out of bed, walk outside, ride on the stationary bike, and begin to resume to normal eating. Slowly, I rebuild myself emotionally for round two of ICE. In which I will be admitted this Wednesday, February 20th. They will keep me, most likely until the 24th. Also, after meeting with doctors this past week. The PET scan - which will determine how much treatment I will receive before transplant - is set for March 4th.

Please send out kind thoughts, and sincere love to some of my fellow friends, and hodgkins warriors, Steve, who is undergoing treatment as we speak for ABVD chemotherapy is getting a PET scan on Monday.

My Boston girl, Kelly, is getting her required three month check-in PET scan this Thursday.

And lastly, but certainly not least, Darrel, is going in for his PET on Tuesday. Which will be around nine months post stem cell transplant for him. Please keep these three, near and dear to your heart this week.

All my love,
to all of you,

B

Broken

The world breaks every one
and afterward,
many are strong at the broken places.

- Ernest Hemingway
---

There is something incredibly devastating about this illness when you're going through treatment. In turn, it is something pretty obvious as well.

Cancer is not beautiful nor sexy. It is not attractive in any shape or form. And no matter how much positive energy, will power, and fire you have inside you. It is still cancer, it can still be depressing and bleak and overwhelmingly heartbreaking.

Any illusions of this form of treatment being tolerable have subsided. As this past week has probably been one of my darkest, in my life. Hence me not updating. Trying, desperately to figure out how to state, "god, I hate this disease," in an eloquent fashion. And creating the facade of everything being okay. Instead of feeling broken.

But, everything is not okay. or beautiful. or happy. I have spent the majority of my time either in a hospital bed, or in my own bed. I barely had enough energy to take a shower today. And, after low blood levels on Monday morning, I was sent back to Upenn for a transfusion. With a small break today, as we head back there tomorrow for a followup visit with Dr. Nasta, possible fluids. And anything else my body will need to combat chemo next Wednesday, the 20th.

Although, tonight I feel a slight upswing in my emotions. I begin, to feel again that I am truly back to this foreign country. The foreign country, that everyone hears about - but no one wants to go to or visit. I am back to being a cancer patient, along with all of the side effects. Along with hairloss, fatigue, and 20 pills a day. Along with the emotional state of feeling that this disease has once again stripped me of my identity and my world. Along with the isolation, and the sadness that you see, reading these words.

My previous words in entries, are still true to my heart. But I would be cheating you, and other patients and survivors reading this now, if I told you my strength and belief in the beauty of the world were the only things I think about. This week I genuinely struggled with how much more of this can I do, without breaking.. how much more do I have left in me, and this is only the beginning..

Cancer is dark, a majority of the time. But within each of us, battling this illness, there is an inner light. Some days, it is fierce and amazingly luminescent. Others, such as this week, it softens with the hardness of this disease. However, it's there. It is always there. We just hope, tomorrow, mine and yours burn more brightly than yesterdays.

- B
----
Today I miss: getting starbucks in Newton
Today I am grateful for: anti-nausea medication
Today I smile for: hilarious words, from a pigfarmer.

The ice holds hard, but for the promise..

My fellow friend, and beautiful Israeli mom of two, Sivan , is an incredibly talented photographer. Recently, she shot these flowers, letting me know she felt they represented thoughts of me. These kind of smiles don't happen too often - thank you Sivan (and dear Bri).

• Dear Gertrude, Now I know what you mean...

Now that I am somewhat settled, in my own bed. And we are pretty much certain that I will not be readmitted (again) back to the hospital.  I wanted to share with you the experience of ICE.  Since I've been on this cancer journey there have been numerous amounts of Hodgkins survivors, I've met various ones my age, but there have been little to none of Hodgkins, recurrent, early 20's,female survivors.  Therefore, a part of me feels that it is vital to keep a record of my treatment path in hopes it will help someone else in the near future if they must endure the transplant as a female patient. 

• The ice holds hard, but for the promise...

ICE represents three different drugs: Ifosfamide, Carboplatin, Etoposide. The game plan is to receive these drugs over a 36-48 hour period. 

Day one of salvage chemotherapy, nurses pumped me with fluids and several anti-nausea medications.  Lots of individuals ask which ones to take when going into treatment. Unfortunately, lots of doctors say the same thing 'it all depends on the individual.' My favorite cocktail through the entire process was, an hour before chemo intake zofran and benadryl, then a half hour before chemo receive .5 mgs of ativan.  It prepared me to be nice and sleepy for the treatment, and prevented that wonderful vomitting that my body just loves so much. Wednesday night after fluids and drugs were taken care of, the Etoposide was infused. 

Thursday morning, Day two of chemotherapy, I was prepared the same way for my next infusion.  Day two I was 'suppose' to be infused for a straight 24 hours. From 9 am on Thursday to 9 am on Friday.  The drugs of choice were Ifosfamaide and Carboplatin, both drugs cause infertility and damage to bladder, and other various not-so-fun side effects that I will spare you the details of.  A very rare occurence is toxicity (too much drug infusion within the body) which causes confusion or hallucination.  

Twelve hours into my 24 hour infusion, I was told later, I was unaware exactly where I was, and was not acting like 'Bekah..' I'd like a definition of that please? What is it, to act like Bekah ;) Anyway. For fear of toxicity, we stopped the drugs, mid-infusion, until Dr. Nasta reported to us, Friday morning.  With her authority it was decided that my 'where-abouts' were not 100% because of the chemo drug, but infact the pain medication I had been on from my port surgery (which happened Wed morning), and the combination of drugs and chemo. She assured us, it was not toxicity. And we proceeded on with the 12 hour infusion into Friday...

Therefore, Friday, Day Three of Chemo was a combination of left-over chemo that was suppose to be complete throughout Thursday morning, and more Etoposide. Which finished up the first round of ICE.  To most outsiders, I get the sense you think - chemotherapy itself is painful, but it is usually the opposite. 

During these infusions, I am somewhat peaceful, reading, listening to music, watching DVD's.  The drugs do not automatically attack your body, Therefore, it is usually two or three days after the entire set of ICE sets in that the pain begins. In addition, Twenty four hours after my last dose of chemo, I need to give myself a small nuluesta shot. This shot produces white blood cells in the bone marrow. Bone marrow growth, in MY body, causes massive pain.  

• Hope is a thing, with feathers that perches in the soul..

The pain, nausea, dehydration, combined basically sent me back into the hospital on Sunday. Luckily, my doctors have a new plan of attack for my second round starting on the 20th. Which I will explain.. at a later time.  For now, It is one solid week after chemotherapy.  With Day one being - the first day of chemo (January 30th), today (February 8th)is considered Day 10.  My counts, have most likely hit an ultimate low, since my blood levels were around 2.9 during discharge. This equates to fatigue and a little to-no immune system to fight back infection. These next days I will be most vulnerable; therefore, will not expose myself to a lot of people. Days 17-21 (Feb 14th - 20th) are the days I will hopefully have enough good counts to see some of my favorite people.  

Things I love about completing round one of ICE:

• sleeping in my own bed
• not vomitting 
• being hydrated
• sleeping through a whole night without a nurse checking vitals
• chocolate milkshakes
• knowing, I can do this. 

all my love...to all of you.

- B

-----

Today I miss: being able to eat apples

Today I am grateful for: winter hats, keepin' my baldness, oh so warm.

Today I smile for: seeing good friends on the 15th

Home

I breathe ghosts
from India
never empty
never full.

lights in my house
turn themselves
off and on
heedless of time.

a simple turn
takes me a decade
to remember, to forget.

i stuff my swallowing
pockets sooner than sunrise
polite, but never a lady.

now it is time for
hugging the tree out loud
tall in serenity.
- Carol Feiser Laque

---
after eight days of hospital care
six nights of sleeping at UPenn
five different oncology nurses
and three straight days of chemotherapy infusions.
Round one of ICE is done!

I am finally home, stabilized, with a few short days to bask in my own home before we return, once again, for bloodwork and possible fluids on the 11th.


Next round of chemo: Feb 20th

Small Victories

My sweetest friends,

• The last few days have been...

some-what of a battle, but I am finally able to eat whole foods and smile at the knowledge of your constant thoughts and caring positive vibes.

After being discharged on Saturday night, it seems that the staff at UPENN had skipped a significant step in lowering my pain, nausea, and other several medications from IV drip to oral pill. Normally, once being discharged off ICE they keep you (I assume) for a few hours, to determine how your body is functioning without the good IV pole (in which my mother now refers to it as 'Pedro). But, instead Pedro was detached, I was sent home, and my insides were not a fan of the 'cold turkey' method. Oral pills were not enough to keep things moving in the right direction...

Therefore, Sunday night - I was unable to keep any foods within my lovely body. Became incredibly dehydrated, and also could not contain any fluids in me, as well. A major cause for concern for any cancer patient. So without any hesitation, the moms and I, raced to Upenn where I was hit with morphine, ativan, benadryl, zofran, and oh so much more your little ears just don't need to hear it. ;)

Long story short, one of the drugs in the ICE regimin can be incredibly toxic to the kidneys. Without being hydrated, and of course past kidney issues, my oncologist team has proved to me in this phase of treatment- there is no fooling around. Thankfully, I was admitted right away to get fluids, potassium, and tons of pain meds, right away. Hopeful discharge will be Wednesday night(6th) or Thursday(7th) morning. For now, things are calm and we will begin tappering off the IV meds, to oral pills in preparation for discharge.

• I've been fortunate enough to have a few lovely visitors..

as I have now found my second home to be on ROADS7, in Upenn Tower. And phone calls, and emails of course. It oddly enough, begins to jumpstart my thoughts into what I want to do after transplant. How we should all celebrate, where I want to go and travel, the things I want to teach, my new possible passion for taking on a third degree later on in life (oncology nurse)...

In my own small way, I believe I have supressed these thoughts because of realistic outcomes of this treatment. I have definitely allowed fears of transplant take hold of you and I. And for that, I feel as if there is a reason to apologize. Restating statistics, allowing you all to know the survival rate or even the cure rate of this brutal process. Yes, the statistics aren't wonderful. But again, when have I ever fallen into the norm, in school, teaching, life, or the medical world? So a small part of me tonight, smiled about a small future. Which I feel is very-well deserved after my small feat of my first round of chemo. I truly believe you have to find those small victories. Tonight, this one is mine.

However, that is certainly not to diminish mine (or my mothers) last week spent within these four walls in the hospital. These last six days of my life I have never, ever, felt more ill, pain, or physically numb from the amount of sickness in my body. I have never felt as though my insides just weren't able to work, any longer. I just.. have never felt that weak.

And yet, in myself, a part of me knows,

I have never felt this strong.

As always,

all my love

to all of you
-B

----

We do not have to become heroes overnight. Just a step at a time, meeting each thing that comes up...discovering we have the strength to stare it down. - e. roosevelt

Round and Round...

Discharged last night (saturday)
dehydrated, unable to keep anything down, pain.
loss of weight,
readmitting this afternoon (sunday).
to keep a watch on kidneys for a few days.

- b

Finishing up Round One of Chemo...

Stil in hospital
some complications
still breathing,
hopeful discharge tomorrow. (saturday afternoon)


- b
----
Today I miss: my bed
Today I am gratful for or: iron kidneys
Today I am smiling for: realize this could be the beginning of the end.