Conditioning Chemo, Day -5

We are finally here.  In some ways you can look at this transplant as the hopeful end to a story, or the beginning of another -- either way, we're finally here to complete this form of treatment.

I was admitted yesterday (Wednesday) and had a small surgery in which a medical team placed a triple lumen catheter  (basically like my port but it has three different access points for fluids, chemo, and antibiotics to travel through) in my chest.  My site is pretty sore and tender; however, it's very helpful.

I've just completed my first round of in-patient conditioning chemo.  Today is considered day -5 in the transplant world, -4, -3, -2, -1 will also be conditioning chemo days.  Once we hit zero, next Tuesday, we will celebrate my rebirthday since it'll be the day Jacob donates his stem cells to me and my whole immune system will be completely brand new.

As for the transplant and recovery time itself, I have many, many fears about the future, graft versus host disease, surviving, and quality of life.  But, for now, I'm attempting to put all of those fears in a small box and up on a shelf.  Right now, I'm looking at this journey through very specific lenses.  I want and need to take things a day, or even an hour at a time, and all I can do is just that.  Take each day as it comes.

Luckily, yesterday and today have been extremely easy.  The brand new Columbia Prespyterian Hospital's BMT unit is gorgeous -- if such a thing can be possible.  It is an 18 patient unit on the 11th floor over looking the city and the Hudson River.  At night the city lights are mesmerizing, during the day you can watch Ferry boats pass through the waters… The floor itself is extremely quiet, everyone is very respectful, caring and attentive. The 46 flat screen TV, personal chef and menu (just for BMT patients), smoothie carts, caregivers futon, and beautifully tiled bathrooms don't make it that bad either ;)

My favorite PA is on this week, and the nurses have been an absolute breath of fresh air.  They check in on us every hour, without fail.  I find BMT nurses to be the best of the best, most of them have an awesome sense of humor and are brutally sarcastic.  I imagine you have to be, working in this field.  Everything I've needed from nausea to pain meds have been given without questions.  They trust me, and my needs, which is so empowering as a patient facing such a huge obstacle, such as transplant.  The social workers appear to know their shit, which is always helpful, and everyone in general gives off lots of positive vibes.  And most importantly, the areas surrounding the hospitals all are filled with tulip beds… red, white, and purple tulips everywhere. Good signs.

For now, it is smooth sailing.  The Flubaradine (chemo) that I received today and will receive the next four days went well.  No side effects to speak of yet (knock on wood), and hopefully it'll be well tolerated.  Most allo-transplanters say this is the easy part, the chemotherapy and treatment, it's really the recovery when your counts are non existent from Day 0 and on…. that are the darkest and most difficult.  But we will see.

One day at a time.  One hour at a time.  One minute at a time.
That's how we'll roll these days :)

In addition, I just wanted to take the time to endlessly thank ALL of you.  Your love, laughter, pictures, reminders, strong positive vibes, and caring words motivate me every single minute of the day.  I am so, so lucky to have every single one of you in my life.  You care for me, empower me, and love me -- and for that, I thank you.

This next year we'll be kicking off our fundraising goals into high gear to pay for this transplant.  Right now if you'd like to help out with the financial journey, or just buy some cool and delicious things, to check out my fundraising page at HelpHopeLive where most of the fundraisers will be listed.  Right now there is a 5k 'Stepping out for Support' that my in-laws are participating in, which you can sponsor donations as they dedicate their walk to me.  There is also a carmel-chocolate covered pretzel sale going on (possibly a great gift for momma's day!).  And we have a few more days that you're able to pick up your own B-Strong T-shirt or B-Strong Sweatshirt .  The T-shirts/sweatshirt sales will end on May 12th, so get 'em while their hot!  My fundraising team and I encourage you to share all of these goodies with friends and family too :)

Preview of the delicious pretzels that you're going to buy :)

Also, if any of you are one of those fabulous motivated people, we are looking for individuals to fundraise in their areas.  There is no time limit here.  We will fundraise for years if we have to -- what fun, right! ;)  So think carefully and simply: could you throw a car wash? a bake sale? hold a jeans day at your work? Go to a local bar and present them with my story/information/flyers (all of which we can provide you) to ask for a percentage of proceeds on a specific night? Do you belong to a gym? -- could you ask them to add five dollars to a class offered at the gym, and those proceeds go towards my fund?.  Are you running or participating in another athletic event -- if you are, would you mind asking friends and family to donate 5 dollars a mile to save a life? Do you have a vacation home or time share? -- can you raffle off a weekend (10 or 20 dollars a ticket) to your friends/family/coworkers and donate the proceeds to my fund?

My fundraising team has SO many ideas, so if you are stuck, no worries, we can help you find something.  If you want to run your own fundraiser, or need help thinking of an idea, please email one of my best friends, Karen, who's helping coordinate all of this at TrueBeautyFundraising@gmail.com.
She will give you all the information needed, she will direct/help you set up a flyer with HelpHopeLive, and then we can advertise it on my blog so others can help out too.  It's an easy process, and doesn't take too much energy but will go a LONG way.  So think about it :) Again, there is no time constraint.  Also, please remember all donations to my HelpHOPELive fund are tax-deductible.  You can find most of the fundraisers, and direct donations to my HelpHOPELive fund by clicking HERE.

So my hope? My hope for you today is if you live in the PA area is to go exercise on May 17th :) Join my in-laws on their 5k walk 'Stepping out for Support.'  If you don't live in PA, go clothe yourself already! ;) With one of our cool T-shirts/sweatshirts.  And above all, go treat someone you love to something sweet and send them some chocolate…or order some for just you -- you deserve it!

Any questions about the above: please email TruebeautyFundraising@gmail.com.
Sending love to all of you,
xoxox,
B.

Green Light.

After my small Florida retreat, Rich and I hit the ground running with pre-transplant appointments.  From heart, to lungs, bone marrow biopsies to teeth and eyes, and more. Oy vey, it's been a very long and painful two weeks.  But we are almost there. Although the plan of attack was to do one more round of chemo and then transplant, things have changed. Due to being in remission and some appointments finishing up on time it looks like we'll (possibly) be moving into my allogeneic stem-cell transplantation in April.  So get ready… cause here we go.

I have officially been cleared on all fronts except for my teeth.  Last week I had a ton of dental work done (chemo completely destroys teeth, even if you take incredible care of them).  I had molars extracted, fillings, and so much more -- fun times.

On Monday, I'll go in to the dentist to make sure I'm officially 'healed' and cleared for transplant.  From then, we'll have an eye appointment Tuesday morning and I will finally be cleared.  If for some reason my dentist does not feel I've healed well enough -- this time line might change.  However, this is what we're looking at as of now...

Bekah's Transplant Timeline: 

• Monday, April 21st: Final Dental Appointment (and a hopeful clearance from the dentist)
• Tuesday, April 22nd: Optomology Appointment (hopeful clearance)
• Wednesday April 23rd: Clinic Appointment with Dr. Zain and team, admittance to hospital that afternoon/evening
• Thursday April 24th --  Monday, April 28th: Conditioning Chemotherapy for five days of Flubaradine and Melphalan chemo, this will bring all of my blood counts down to zero.
• Sunday April 28th, 29th and/or 30th: Jacob (my hero of a brother) will begin/complete his stem cell collection
• Tuesday April 29th OR Wednesday April 30th: My Re-Birthday, I will intravenously be infused with Jacob's stem cells. 
• May 1st -- and beyond: Hospital Isolation until cells have completely engrafted and then Release Day. This usually takes 15 to 30 days till I'll officially be released from the bone marrow unit.

After the cells have been infused, we wait for my cells to 'engraft' or to 'take' -- meaning, that Jacob's cells will take over my immune system, and I will have his cells and his DNA.  Please send positive thoughts that Jacob will feel little to no pain during his collection, that engraftment will be a success, and that my cell/blood counts will begin to rise after this small but powerful infusion of Jacob's cells.

As we've found out in the last month, things can change on a dime.  So, although this is a hopeful timeline we've learned to roll with the punches, and go with whatever changes are needed.  If you don't see an update, this is how the timeline will stay.  If there is a major change, I will update you all as needed.

Mentally, I feel prepared.  We've been preparing for this since we left for Seattle almost a year ago.  With a remission in our back pocket, a blessing from Dr. O and his team, a ridiculsouly supportive partner, loving family and just kick-ass friends.  I am so grateful for all the support, emotionally, physically, and financially that has been given to us.  We hear you, we're receiving your vibes, and thoughts, and we really do love you all for everything you've done for us through this process.

For communication purposes and support through this process:  The best way to communicate directly with me is through text message or through email (RebekahFurey@mac.com).  But please do not expect a timely response.  If you are looking for updates we will update through the blog and through the True-Beauty-Never-Hurries Facebook as much as we can when we feel there needs to be a crucial update.  If you need to know something specific or check-in with us in need of a timely response, please call, text or email Rich.  We will do our best to respond and send out updates when needed.


----
Supporting someone and their caregiver can be difficult through the transplant process so here are some small bullet points that I thought might help all of us:

What helps through transplant…

• Research: First things first, it may help you to know know what I'm about to go through: Read some quick cliff notes on what a stem-cell transplant or others call it a bone marrow transplant.  Click here to learn about stem-cell transplant.  Mine will be an allogeneic transplant (stem cells from another donor -- my brother).  I already had an auto-transplant (my own stem cells rein fused into me) in 2007/2008.

• Mentally:  As most of you know this is not my first rodeo.  What really helped in the past and through the last few years is text or email messages reminding me that you're still thinking of us, and cheering for us through this very difficult procedure.  A small "thinking of you…." or "I'm sending you big hugs or healing vibes" goes a long, long way for a patient's mentality. As well as the caregivers.  Send us your love -- we welcome it with open arms.  And it keeps us moving forward. It really does…

• Financially:  Rich is currently not working due to being my full-time caretaker, and our medical and daily bills are piling up.  Please visit my tax-deductible fundraising website: HelpHopeLive to donate money directly.  Or pick up a cool 'B.Strong' sweatshirt OR 'B.Strong' T-shirt (both have different designs and are on different websites) the proceeds will go directly towards funding my transplant.  They are being sold through May 12th.

         I am so, so, grateful towards those who have donated thus far; however, Medicare will only cover  
         80% of this stem-cell transplant, so we are in desperate need of funds.  Again we thank all of you
         who have donated already, and those who participated in our recent Stella & Dot fundraiser
         (you raised 800 dollars!).  I truly can't thank you all enough…

• Physically: Cards, emails and your words.  Once we have our hospital address, we will let all of you know.  If you are interested in sending something, please email Rich and he will send it to you.  Or you are welcome to send me an email: RebekahFurey@mac.com.  Once we are allowed visitors (after Jacob's donation) we'll be welcoming home-cooked meals in the hospital (and after release day), as well as those who love to clean to use your cleaning skills to clean our apartment before I am released back home -- it must be 100% germ free (help!)

• Above all, we ask you to support other warriors in the most important way possible… 

Pay it Forward:  Join the Bone Marrow Registry.  

       
         I am so, so incredibly lucky that Jacob is a perfect 10/10 HLA match to move forward with my

         transplant.  However, not all Lymphoma and Leukemia patients are as lucky.  

         Join 'Be The Match', join the bone marrow registry for FREE.  Just fill out some forms, they will 

         send a kit for you to swab inside your cheek and you could literally donate your stem cells (it's    
         just like giving blood) to a stranger, and save his or her life.  Think about it -- then do it.  I have
         many, many friends right now waiting for their perfect match -- it could be you.    

What does not help through transplant….

• Expecting a response.  I always tell my friends and family they are free and welcome to send messages (hopefully uplifting ones!) through this process.  But please know this is a different ball game.  This is life or death here and it can be a very stressful process.  We will do our best to notify those with updates when it is necessary.  For us, we really try to take everything a day at a time.  Sometimes that means shutting off our phones, sometimes that means just not responding to the outside world, sometimes that means just taking things an hour at a time.  We will do our best to respond to everyone in a timely manner, but we just ask for as much space and patience as you're willing to give us.

----

This is the first step to what we hope will be a very long journey of healing… once the donation of cells are complete, it is truly only the beginning.  We have great fears and great hopes, but the outcome of this process is completely unknown.  We could receive a remission from Refractory Hodgkin's Lymphoma (HL) and the Myelodysplastic Syndrome (MDS), or I could relapse with both diseases and even be diagnosed with a a third Graft verse Host Disease (GvHD).  I may survive, or I may not.  Whatever the outcome, we will take this new path one day at a time.  And remain hopeful.  Very, hopeful.

You will find the most recent updates on my Facebook Page, feel free to click here and add me as a friend as family and friends will be updating throughout this process to keep everyone informed too.
Click here: https://www.facebook.com/truebeauty.neverhurries

Please send positive vibes that we'll receive clearance on Monday and Tuesday so we can get the ball rolling and start.  Today, and everyday as we move forward we're choosing hope.  We ask you to please remain hopeful with us too, no matter how challenging these next few weeks and months will be. We choose hope.

And as we all know, life can be sweet -- 

even in the broken places… 

Sending all of you so much love and light,

B.

For those who relapsed after an Auto-SCT or are Refractory Hodgkin's Lymphoma Patients:

This post is for any individual who has relapsed after an auto-stem cell transplant or has refractory Hodgkin's Lymphoma.  I have also attached it to the top tool bar of the blog so you are able to access it at any given time.  I hope this helps.

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I am Refractory (ABVD, BEACOPP and other first line treatments are not working)/I Relapsed after Transplant: What Next?

It has been an absolute honor and incredible struggle to be part of the Hodgkin's Refractory Community.  The souls I have met and crossed paths with have changed my life dramatically; however, living with this disease on a daily basis is not the easiest of lifestyles.

Due to creating so many relationships with other Hodgkin's Lymphoma Patients, it has come to our (the HL commuinty) attention that there is not enough information or guidance when a Hodgkin's patient relapses after an auto-transplant.  Since Hodgkin's disease is rare to begin with, and the cure rate is so high there are a small population of us who unfortunately do relapse.  Therefore the next steps after an auto-transplant are crucial to your body, your survival rate, and your mental health.  

Most general oncologists, although they are very well educated may not be well-versed in relapsed/refractory HL due to it's rarity.  In turn, they may or may not be aware of various options for their patient.  When you relapse and you are under a general oncologist, he or she can only provide you treatment that your specific hospital provides.  Therefore, your next steps are critical to receive the best treatment for your specific disease.

I feel so fortunate that other Refractory HLers reached out to me during my time of relapse, and educated me on  how to make the best choices despite my circumstances.  I felt it was only necessary to do the same for others...

Steps to take if you are refractory and or you have relapsed after Transplant: 

Be aware that you have many options.  And options give us hope for the future.  These next steps are difficult, but trust me, they are doable.  There are many of us out in the HL community who live long lives being treated with clinical trials or receive an allo-transplant and are alive today.

Review where you are located, who is treating you, and ask yourself these questions

• Am I being treated by a lymphoma specialist?
• Has my oncologist treated relapsed Hodgkin's Lymphoma before? Has he/she treated MORE than five patients?
• Am I being treated at a major cancer facility?
• Can my oncologist offer me other options besides an allo-transplant? 
• Have you sent you files elsewhere and received a second opinion? 

If your answers are no, this needs to change for your next set of treatments.  Refractory HL is a specific and unique disease, unlike the normal HL treatment protocols.  It requires a tailored treatment for your individual disease and only professionals with experience treating refractory HL should care for your disease, no exceptions. (No exceptions meaning, you need to put aside finances, health insurance, time, and be willing to travel  to a specialist if you want a longer survival rate).

Go see the top specialists for Refractory HL in the country.  This is in your best interest if you have relapsed after an auto-transplant to distinguish a short and long term plan.  Call and consult with Dr. Anas Younes or Dr. Owen O'connor. They are both able to offer multiple options of clinical trials and discuss different transplant options, as well as their medical opinion of which track you should choose determined by your individuals disease.  Be your own advocate, your cancer is serious but with tailored treatment you can be okay.  This means, even if you can not manage a flight for a consult, email Dr. Younes or Dr. O'connor.  When you email them include: Name, Location, Treatment History (hospital locations and oncologists you were treated by). Be short and to the point, but pack it with as much helpful information for these professionals to help you.

• Dr. Anas Younes

         Memorial Sloan Kettering Cancer Center

         New York, NY

         New Patients Phone#: 646-497-9137

         General Phone#: 212-639-7715 

• Dr. Owen O'connor
  The Center for Lymphoid Malignancies
  
  Oncology Nurse Practitioner
  The Center for Lymphoid Malignancies
  51 West 51st Street, Suite 200
  New York, NY 10019
  Phone #: 212-326-5720
  Fax #: 212-326-5725
  Email: oo2130@mail.cumc.columbia.edu

Be aware that the next FDA approved drug used for Refractory HL is SGN-35 also known as Adcetris. And there are other options... Most major cancer facilities and lymphoma specialists should have this form of treatment.  There are many individuals who have reached remissions with this treatment, or utililized it to bridge them to an allo-transplant, or received this drug for managed treatment.  Either way, it is a successful drug and it should be on your radar if you have relapsed or are refractory.  

• EBV+ Clinical Trial: Ask your oncologist to test your tumor block for  EBV+ tumors/Epstein Barr Virus positive tumors (not your blood, your actual tumor block).  You can do this by calling pathology yourself and requesting the test.  If you have an EBV+ tumor, you might want to consider before all else a non-toxic clinical trial first.  Read more on that trial here oh and here. 

• Revlimid: Many Refractory HLers are seeing positive results from this drug, normally used for Myeloma patients 

• SGN-35 + Bendamustine: Combination used in several clinical trials that are happening in the U.S. (Go to www.clinicaltrials.gov and use the search engine by putting in "Refractory Hodgkin's Lymphoma)

*Click Here to view a current list of open Refractory HL clinical trials.   For you to do more searches, keep in mind what phase these treatments are on. Phase I, II, or III. (The higher the phase, provides a higher form of research). 

Do not make a quick treatment decision.  There is always time for a second opinion. Educate yourself.  Above all, remember there is always time for a second opinion.   SGN-35/Adcetris may be your first option; however, you most likely will be faced with the decision if SGN-35 does not put you into remission.  Will you want to pursue an allo-transplant, which has a chance of a cure but has high risks OR maintain your disease through managed care such as various clinical trials that are on the horizon?  Both options have pros and cons and it is critical that you ask your oncology team difficult questions to make the most informed decision for yourself.  Either way, collect information from you oncology team, seek out second and third opinions, and weigh all of your options.  

It is a very personal decision, and only you know what will be best for you.  Please remember everyone's Refractory HL disease is different some of us have more aggressive HL, others are chemo-sensitive but very refractory (disease responds but continues to come back after treatment), and others disease never goes away but is not very aggressive.  Due to YOUR individual disease, a lymphoma specialist, especially the two above will be the best doctors to determine what route: clinical trial vs allo-transplant you should be treated with. 

• I encourage you to read some of the following on this topic.  
• Written by Alison, mother of Adrienne: Cure vs. Management
• Research clinical trials around the country/world for Refractory HL at: clinical trials.
• Visit other educated Refractory Lymphoma patients on the Refractory Facebook Group and Hodgkin's Forum. 
• If thinking about an allo-transplant research articles such as this one, oh and this one.

Ask Hard questions. This is your life. Ask those hard questions, even if it is difficult to hear. You are putting your life in your specialists hands. When you are faced with an allo-transplant or a clinical trial.  Remember to ask your specialist the following:

• For those facing an allo:

• How many relapsed/refractory Hodkgin's Lymphoma patients have you treated?
• How many of those patients have achieved a remission? A five year remission?
• Discuss GvHD: How do you treat it? How many of your patients experienced Grade 3 or 4 GvHD? 
• What is the percentage or mortality or survival rate of those treated with allo-transplant? 
• How many patients have reached a remission and have low to little GvHD that you have treated? 
• Discuss side effects, ALL of them. Even those that are 'rare.'
• Will this prevent/exclude me from receiving other treatments?

• When faced with a clinical trial:
• What phase trial is this? (one through four, four being the safest). 
• How many relapsed refractory HLers have enrolled in this trial?
• How many of those HLers responded? Partial Remission? Complete Remission? 
• What are the side effects? How will we manage these side effects?
• What is the mortality or survival rate?
• Will this prevent/exclude me from receiving other treatments?

Utilize resources available to receive the best treatment you deserve.  Do you have financial constraints and can not pay for a plane ticket, pay for lodging, food, act? 

• Visit Corporate Angels, they will fly you for free. 
• Stay at Hope Lodge, a free facility for Cancer Patients in New York City.
• Reach out to your Leukemia and Lymphoma Chapter for financial support.

Please remember it is possible to live with this illness for a majority of Refractory HLers.  It is your job as a patient or caregiver to seek out the best medical treatment, be willing to travel and ask your team difficult questions to receive specific treatment for you or your family member, friend, ect.

Above all, remember that with options there is hope, and there are many, many options for all of us. 

Sending love and tons of light to 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.

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

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

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

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.

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...

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

----
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.