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.