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
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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.

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

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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

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

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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
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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.

Peace, for treatment one.

One of my favorite artists is Ansel Adams. His photographs always give me a sense of peace and tranquility of the world. With his eye and talent, some of the simplest objects transform into brilliant poetic pieces of art in front of our eyes. His talent comforts me, and the sense of peace calms me. A calm that is needed the first day of treatment.

A very wise woman, fellow friend and cancer survivor, Sarah, has stated numerous times to many other cancer warriors, that the only way out of this brutal treatment, is through. And the only way through, is to first, find peace within yourself. I may not have a terrible amount of control over this situation, but I can, for certain listen to Sarah and her words of wisdom.

Information:

• Tomorrow morning at 8am, will be the port surgery. They will then admit me to the hospital late morning. Following with fluids, and beginning the first transfusion of ICE chemotherapy. Treatment will begin around 5 or 6pm tomorrow (Wed) night. We continue treatment til mid Friday.Hopeful release will be Friday night or Saturday morning, pending on complications.

As so many of you have expressed a form of helplessness, that you wish you could do more. I ask of you, while you can not do much for me during these next three days. Take the kindness so many of you have embraced me with , and shed it upon someone else, that could benefit from your love. You'd be amazed at how much each of you affect me, everyday. I can't imagine how another individual would feel receiving your kindness, as well.

For now, we begin the battle.
To end the war.
With each of you, as the army behind me.

- B

a woman of valor more precious than rubies
she is robed in strength and dignity,
and graciously faces whatever may come...

You must be able to see the beauty in pain...

Darrel Hale , is one of the most stoic, sensitive, and profound survivors I have met along this cancer battle. If anything, I attribute my ability to form these thoughts from our long, lovely, conversations.

I feel, in life, we are able to see the pureness and beauty in the most painful and heartbreaking, situations. This beauty can consist of, your inner strength, the light inside you, the relationships around you, or something as simple as pausing and realizing for the very first time, how the sound of your feet crunch lightly in soft snow. The perfection of that action, the beauty, that you see -- that maybe not everyone else takes the time to cherish, and place delicately into their heart. But you are, you can see it. I can see it. I am determined to find the beauty, in this.

• Stage III Disease
  

Yesterday, I would consider was one of the most emotional days for me and my family. We had appointments with my original oncologist team who treated me through my first chemotherapy, my new transplant doctor, and a fertility consult. The news that probably hit us the hardest was that I am at a progressive stage three disease. We were surprised with this result, because of a recent, clear x-ray done in mid-November. We walked into the doctors office thinking I would be in the early stages of this disease since it has only had a month to grow. Apparently, not. So, we took a breath, a deep one.

Luckily, the transplant doctor, Dr. Sunita Nasta - one of the top transplant doctors at Upenn Hospital, does not seem phased by the status of my disease. She is a calm, confident, women who has had very successful transplant treatments, under her care.

• Infertility

Lastly, and certainly the furthest thing from my mind, but the hardest to accept will be my infertility as a result of ICE and BEAM chemotherapy. I still have yet to digest that one, and will probably do so after transplant. I do not believe there are reasons for this, but once again know that there are other ways to be a mother, that I will turn this negative into a positive when the time comes.

I believe, honestly and truly in this concept. That I, as an individual have the capability to find true beauty in what I am about to endure. I once again have the choice, when I look at these appointments I have the choice to curse up at the heavens, to wallow, to cry with heartache. Or I can see through the pain, I can see push myself to see the good. To recognize that I have doctors, I have the possibility of a cure, I have people who love me, deeply. I have a fierce, fierce spirit that has beaten the odds before. I have beauty in myself, and in all of you. And through all of this, I hope you allow yourselves as well to see the beauty in life, even in our time of pain.

Chemo begins: Wednesday January 30th.

-B

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Today I miss: being a teacher
Today I smile for: breakfast conversations
(airdales in red snow boots)
Today I am grateful for: my brother and sister.

Choices

As life hands each of us challenges, we begin to realize it is not the challenge that will mold us into the characters we are, but how we choose to react to these challenges.

Last week through a pathology, oncologists did confirm that the Hodgkins Lymphoma has returned. My choice is to continue with treatment. This treatment will consist of four parts.

1. ICE chemotherapy:

• ICE chemo is on a twenty one day cycle. This means, I will be admitted to the hospital (in-patient) for three consecutive days of infusions and fluids. After these three days, I will then be released and have eighteen days to recover.
  
• We will most likely do three cycles of this treatment. Over a three to four month period.
  

2. Stem Cell Collection:

• Stem cells will be retreived (since my bone marrow is clean, I will be using my own stem cells for this process). Once doctors have retrieved enough cells from my blood, they will harvest them until they are ready to go back into my body.

3. BEAM Chemotherapy:

• After all three rounds of ICE and the stem cells have been collected, there will be a week or two of recovery before I am admitted back into the hospital.
  
• I will then undergo five consecutive days of infusions of this specific chemotherapy. In cancer terms we consider this 'day -5,-4,-3,-2,-1.'
• During these days, the BEAM will wipe out my entire immune system as well as my bone marrow. In hopes that the cancer will never return
  

4. Stem Cell Transplant

• On 'Day zero' I will then receive the harvested stem cells back into my body. This is considered your re-birthday. My immune system, and cells are basically starting over.
  
• During this time in the hospital we wait till my cells engraft, form, and blood levels resume to a normal level. This usually takes two to three weeks, and this part of the treatment is in isolation.
  

I realize this seems incredibly overwhelming. But, I choose to take things one day at a time -- that is all we can really do for now. I am so grateful for all of you, and your on-going support through this tough time. This will not be an easy battle, but I assure you - it is doable. Especially with all of your love and comfort to push me through.

I will be meeting with my oncologist team this Thursday to confirm dates on ICE. I will update when we have confirmed these specific dates, as to when I will be in the hospital, what days I will be able to talk on the phone, and times I will be unavailable to speak.

All my love, to all of you,
B

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Today I miss: my life in boston
Today I smile for: knowing that there is still a cure
Today I am grateful for: all of you.