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.

Roll with it: New Time Line

O'connor and Zain feel as though we've missed the transplant window, due to my dental work.  It's been too long since my last chemotherapy to bridge us to transplant.  Therefore, to keep my disease in remission before transplant occurs we are doing one last round of chemotherapy.  So, we have to move some things around.  Between this week of chemo, and the conditioning chemo before transplant it will definitely kick my butt; however, this is what seems necessary to move forward.  So, we will suck it up, and do it to give myself the best chance of a cure.

Here is what we're looking at, as of now.

New Transplant Timeline: 

• Today: Dentist, Benadmustine chemotherapy
• Tomorrow: Brentruximab chemotherapy
• Monday, May 28th/Wednesday, May 30th/Friday, April 2nd: Clinic visits 
• Monday, May 5th: Admitted to hospital
• Monday, May 5th evening/Tuesday, May 6th -- May 10th morning:  conditioning chemo for five days.
• Sunday, May 11th: possible day of rest, possible stem cell collection from Jacob
• Monday, May 12th: Jake's stem cell collection/I receive new cells: Rebirthday

Let's hope we stay on track.

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.

Let's get this party started!

Round Five of chemo (Brentruximab and Bendamustine) came and went, so did the nulesta shot, bone pain, a cold, and now I am sitting comfortably in my Uncle's Florida Beach house, recovering from one of my (hopefully) last rounds of chemo, and counting my blessings.

With a remission under our belts, and this past round of chemotherapy, we are one step closer towards my cure: the allo transplant.  We are aiming for Mid-April or Mid-May for this treatment.

So the big question -- what can you do to help!? 

I have an answer for you :)

Cancer is expensive people!  So, one of my life lines, Karen R., has set up yet another fundraiser, but this one is online and you get to shop and end up looking fabulous! A win-win for all.  Stella and Dot is a gorgeous company composed of jewelry, accessories, bags, and beautiful BLING! And they want to help.

From now until April 9th you can purchase ANY item from their site and 25% of the proceeds will be donated to my transplant fund! By following this link: http://www.stelladot.com/ts/w8cx5, and purchasing the perfect piece of jewelry or hand bag, you'll look fabulous, I'll be cured, and life will be good.

To ensure that we receive your donation make sure the Stella & Dot welcome page has the following message below. It should read: Let's get together for some fashion and fun, and shopping for a cause, shop until April 9th, 2014. 

and on the side bar you will see a 

message from Karen…

Let's come together for a fun Ladies Night Out

for a Great Cause!

We will be styled and shop the NEW Spring Collection from Stella & Dot

While we raise money to help support Rebekah Furey

for her allo stem cell transplant that will take place this Spring.

Once you see these messages, proceed to shop for some bling!! 
Again, here is the link -- feel free to copy/paste it/email it/post it to friends.

 http://www.stelladot.com/ts/w8cx5 

As always, if you'd rather just make a direct donation you can simply donate to my tax deductible Transplant Fund by clicking here.  All proceeds will fulfill medical bills, co-pays, prescription costs, transportation, and our daily bills; since my partner will be out of work and taking on a full-time care-giving roll for these next 3-6 months of my treatment and recovery.

So, let's get this party started -- you with your fab jewelry and bags,
and me with my amazing cure :)

Have fun shopping! And please feel free to post, email, and/or share my blog with this information or any of the links I've provided in this post to your friends and family.  We need all the help we can get!

Love,
B!

A Sweet remission!

It's been a long time coming, but we finally got here: 

a COMPLETE remission!

On March 17th, I finally received my remission to start planning the next phase of treatment: An allo-stem cell (donor) transplant.  There are many appointments (doctor and dental), testing, and meetings to occur… but we finally are able to take steps forward to complete this allo-transplant.

Here is our time line as of now:

Yesterday and the 18th of March, I received my fifth round of Bretuximab (SGN-35) and Bendamustine chemotherapy.  We also met with the dietitian, social worker, and financial aid from Columbia at NYP.  However, there is still a LOT to get done. It has been a busy week, and tomorrow we meet with Columbia's dentist, an Echo, EKG, X-rays, receive a Nulesta shot, and run a CBC in case I need extra platelets and/or blood transfusions.

• In the next month: If we are able to fit in all of my appointments, a bone marrow biopsy, Jacob's (my lovely brother/donor) appointments, tests, and treat my teeth (unfortunately with each chemo treatment, more cavities add up which is difficult without dental insurance…) Without causing any infections then we can proceed to transplant in Mid to late April.  Our goal is to only have four weeks between my last chemo treatment (March 18th and 19th) to the first day of being admitted to the hospital.  Which land us on April 14thish.

• IF we are unable to complete all of these appointments and tests, or an infection does arise, or all of our ducks are not in align. We will do one last round of chemo the week of April 14th, and then proceed to my allo transplant in Mid-May.  

• We want to take these next steps carefully and make sure that everything moves forward smoothly.  So that is the plan of attack for now.  As the weeks move on, I will update more to inform those of you when I will be admitted to the hospital, if I'll be receiving any form of radiation, and how many days of intensive chemo I will have to endure in the hospital before my allo-stem cell, to rid my bone marrow of all cells.  Basically this will be a re-boot and I'll start over with Jacob's cells, which means my bone marrow has to be cleaned out by one last hit of intensive chemo (inpatient) the week before I receive my donor cells.

I know, I know, it can be very confusing.  So for now, just know we have achieved a remission -- the first step to this transplant process! And we are still in need of funds even though we are receiving treatment in NYC, for dental, transportation, covering 20% of health insurance (copays, medications/scripts, Jacob's transportation, our rent, and so many other fun bills that we get to pay along the way.).

• So please, please, help and donate to our transplant fund as we make our way towards curing my MDS and hopefully finding a cure for this stubborn cancer. Click HERE: Every donation is tax deductible. 

          Or follow click and paste the website…
          https://m.helphopelive.org/find-a-patient/profile/index.cfm/patient/78B0798F-E787-5EE8-
          F78097B407B3CFCD



Here's to a sweet remission, the first day of spring,
and all of your wonderful support.

Love,
B!

My Mother Effing (30th!) Birthday

Today is my thirtieth birthday.  It has been a hellish year. A year that just kicked my ass and everyones who supports me. This year I've been hospitalized more in one year than I have most of my years (that I've been ill) combined.  I was diagnosed with MDS. Too many warriors I loved passed away. We decided I'd move into an allo transplant and made the difficult decision to have this form of treatment in NYC at Columbia with Dr. Owen O'connor and Dr. Jasmine Zain.  We lost friends, jobs, hope of treatments, bone marrow, nerve feeling, hair, for a period of time I lost myself, my positivity, and my hope for a future.  It has been a fall down-kick your ass-stomp on you till you can't move-bekah fell off the face of the earth (no communication) kind of year.

But…

Yes, here comes the but --

At the same time.  I am still here. I AM STILL HERE. And this year, I have a shot of a cure.

Truth be told, I'm not huge fan of my birthday.  I tend to get a little down for some reason, thinking, reflecting, letting feelings fly because the reality is I have been a cancer warrior (and have been treated) all throughout my twenties -- and there are three ways to look at that fact.  I can be depressed and allow my emotions to swallow me whole because I have been sick since I was twenty one OR I can be grateful that I am still here unlike some of my fellow warriors who I can't help but think they should be facing this milestone with me this year or a few years that follow (Adrienne, Anne, Eric).  OR I can be both.  I never realized I could feel both until the last few years -- but I can.

And that's where I am this week, between these worlds.  There are hours, even days, that envelope me in sadness.  Tears that talk of the past, the struggle, the adversity, the treatments, the loss.  But what follows these tears are reminders which lead to how grateful I am to still be here no matter how hard this can be.  Because we all know if it wasn't hard.  It wouldn't be worth it. And good god, it is.

This morning I received a bouquet of beautiful flowers from Anne's parents. Anne, who is no longer with us and with each milestone I continue to think -- she should be here doing this, but instead her energy surrounds me. As do many warriors… and I realize how lucky I am, how fortunate I am, how my story is not even close to being complete.

And even though I would never wish cancer on anyone, or believe that cancer is a gift (whoever says that -- sorry it's complete bullshit), I do believe I have found the most amazing silver linings in the world due to this disease:

• I'm turning thirty today.  Thirty.  At twenty three when I completed my first transplant I was told by my Upenn oncologists that I would not reach the age of twenty five, maybe twenty six.  Yet, here I am.  Having relationships with some of the most courageous warriors and medical teams (yes you: O, Ellen, Laura, Kathleen, Emily, Renee and Tabitha!) in the world. You name a state or country and I can tell you an individual or family who has faced cancer and how they've impacted my soul.  For that, I am so, so fortunate.

• I was faced with the challenge of leaving the classroom, teaching, and my entire professional life (what I thought was my greatest love), which led me to the greatest profession of all, counseling psychology.  A place and environment in which I've met the bravest and kindest children, parents of these children, co-workers, supervisors, classmates and have challenged myself intellectually and emotionally.  These individuals have left a huge imprint on my heart and mind.  These people, this field is something I may not have ventured into unless I was forced out of the classroom -- for this, I am grateful that I was able to find my niche before the age of thirty.  I found my place in the world in which I can make a difference, and I can't wait to get back to all of it after this allo-transplant.

• I found and strengthened relationships with the loves of my life.  My friends and partner have become my family, cheering section, support, caregivers, and so much more.  Those who have stuck with me through this journey are my earth angels.  They give me strength when my well is dry.  They love me on my worst days.  Between my loves from Boston/Wheelock, to my original Dtown fam, my bests (Meliss, Kare, Kate), Chestnut Hill women, my HL family, and all of you. You have sent me candles, books, food, light, your friendship, his love and constant support, goofy gifts, CAKE, stunning cards, messages, tea, chocolate, voice mails, texts, flowers, and love, love, love… so much of it.  I never realized how much I could have in my life, but goodness, I have so much and am so grateful. 

• I love my crazy family even more. My moms. my brother. my sister. my cousins. my aunts and uncles, my grandmother, my partner's family. My relationships have changed so much, our priorities have changed so much, and when I find myself falling -- there is always, ALWAYS someone there to catch me. Celebrate with me. Love me. Support me. And walk this path with me, on days I can barely walk myself.  

I may have had this disease for almost a decade, but I have lived.  I was given the privilege to live this life, however difficult or challenging, however calming or euphoric.  I was blessed to still be here, to prove those oncologists wrong… to live, to feel, to love.  And this year, to possibly fight for a cure.  I am still here on my mother effing thirtieth birthday.  And for that I am thankful.

Here's to 30 -- being the best yet….

….and most of all

Here's to receiving a cure.

B!

-------

Next PET/CT Scan: March 17th

Next Chemo: March 18th and 19th

Allo-Stem Cell Transplant: Mid April or Mid May pending on scan.

**If you want to help me receive this cure

click here to donate 10 dollars or more to my transplant fund. 

It would be the most amazing birthday gift in the world :)

Chemo Four - Complete.

Hello all, Chemo number 4 is complete and now we wait for counts to fall!  My plateletes and HGB (red blood cells) have needed support through this chemo, so now our chemo schedule has shifted.

This week we infused on Wednesday February 18th and Thursday February 19th.
We will head into get platelets today, and blood next week.

For now, we will receive chemo: this past week -- will need food and lots of love this weekend to replenish my body and mind.  Individuals have been asking how they can send food.  There are several ways.  You can order gift cards from:

1) We order our groceries from DirectFresh.com to be delivered to our door: https://www.freshdirect.com/index.jsp

2) Frank Anthonies: http://www.yelp.com/biz/frank-anthonys-verona
(subs, italians, delivery)

3) Chanti: http://www.chatnionline.com
(Indian, delivery)

4) Spice II: http://www.spiceii.net
(Thai, Delivery)

5.) Casapiquin: http://www.casapiquin.net
(Mexican, Delivery)

We will list more and more restaurants as time comes…

We have also made a final decision that transplant will now occur in NYC with Dr. O'connor and Dr. Jasmine Zain, my team here.  It is emotionally, financially, and just easier all around with support.  Therefore, Seattle is out of the mix; however, we will still need finances to fund us through this three to six month process, as I will need caregivers during this entire time.  This is all the brain power I have now, I will update more come the weekend/early next week.

Thanks for the support and cheering, we need it!

Next round of scheduled chemo is on March 12th and 13th.  We are still desperate for candles, books, and food… so send 'em our way!

Love and Light,
B.

Plan of Attack

The month of hell is complete -- and we all survived (somehow).  No major reactions except fevers.  So many people sharing their love, gifts, food, light, with me.  It's been a difficult month but to see how many people are in my cheering section is just mind blowing.

So, what next?

This week I actually have off -- just blood work -- Wahoo!.  The main issue we're having right now is neuropathy, and swollen ankles.  I've fallen twice, and its extremely hard to walk (especially up stairs), and to open things.  I've lost all the the feeling in my toes, and it's moving up my calves at this point.  My fingertips are also completely numb.  I'm concerned.  This is a side effect of some drugs -- and years ago when I received SGN-35, I also had the same side effect.  It was one of the reasons why we stopped the drug.  So, we have to problem solve this issue.

Beside the neuropathy, Dr. O has decided we will now have chemo every three weeks.  These are the dates in case you want to drop off food these weeks, or send some positive vibes.

Infusion Dates: February 12th and 13th
March 5th and 6th
March 26th and 27th

There are two dates since we will be combining SGN-35 and Bendamustine.  I'm hoping the nueropathy won't worsen as infusions pass, it would be a horrible side effect not to be able to walk that well and we don't know if this will be permanent or not. However, I know we also need to look at the big picture, and as far as my life and energy goes I'm doing very well, so we cheer for that.  I have so much to be thankful for, especially this week without poison.  My body is loving the relief, loving it.

After these infusions, we hopefully head to transplant depending on scans and how my cancer is doing.  But that is for another day…

I can never thank you for all of your support, love, and positive vibes.  Again, I know I'm here because of the people and love that surround me, and for that I'm so grateful.

Love,
B.

All of you

This month has been awful yet wonderful.  I have received letters, candles, books galore and even lovely gifts that I don't deserve and a box of these beautiful chocolates from the Cavanaugh family that I don't even want to to touch because they are pieces of art.  I am so lucky and grateful in so many ways as the onslaught of chemo continues…

The best pieces of inspiration though have got to be your words.  Your love. Your light. You telling me I  can keep doing this, and as Charles says "A little bit of chocolate always helps."  We'll, yes it does sir!

As for cancer talk: The plan of attack now is to receive SGN-35 once a week pending my counts be well.  Plus Bendamustine on day 30 (end of the month).  There haven't been many reactions except for chemo fevers and major neuropathy (which we are all a bit nervous about -- losing feeling in my feet).  However, I'm trying to work my legs, and we're getting in home Physical Therapy starting next week.  Hopefully I will still have feeling in my legs by the time this is all over.  I guess it's the price you pay.

The good stuff:   My ESR, which has usually been indicative of my disease in the past reached an all time low of TWO this week.  This is brilliant and in many of our minds we're hoping it means the SGN-35, on a higher dose, is now working four years later.  I swear if it wasn't for my last charge nurse, Laura B -- I would've never allowed them to even infuse me with this drug.   But because of all of her notes from years ago, we all held our breath during this infusion, and she was right on the money, in so many ways.   I am so so grateful for women, nurses (Ellen, K, Em), PA's (Alex, Carrie).  The entire Six North floor and just all  of my medical staff in general.  I have resources that not many others have and on a good day, I'm able to see the light and have clarity in all of this.  I know how lucky I am…. how fortunate I am.  And I hope they all see that when I'm in the midst of hell.  

So we continue with SGN, ever week -- the last week of the month we add Bendamustine then I believe we will scan.  Transplant will most likely happen sooner than we all think (if I hit some form of remission), so if you do have pockets you want to open and not spend money on gifts which at this point we REALLY need the funds for Seattle.  Here is where you can go to donate: DONATE

Tomorrow I receive my infusion as it's been pushed back a day due to insurance.  I'll probably have chemo fevers and be out of it for the weekend, but one month of pure hell I think I can do with all of your support -- we've gotten this far in seven years haven't we? And it's mostly all of your doing.

Again, I can not thank you ENOUGH for all the goodies, letters, books, disctrations, love and light.  You make me move, you make me write, live, and breathe again when I can.  And I am so grateful for all of it.  

Love and light to all of you,

xoxox,

B. 

We did it.

We did it. Four days of inpatient, no big reactions this round the SGN+ Bendamustine actually worked.  We all held our breath, the entire nursing team, my oncology tream, my family.  But we did and it such a relief.   The one thing that has occurred though is I'm having a few fevers which I did have previouslsly when I received this treatment before, so right now I'm still in patient to make sure that everything is a-okay.  There's a part of of me that doesn't mind thought because this round of chemo went so smoothly, so smoothly in fact I slept right through it it.

I've been lucky too, my brother has come up to stay with me since Rich is still is still working full time and we're attempting to make sure I have a a caregiver with me at alll time,  as it it isn't easy being here trying to remember all of to he medications, getting food, and just having company…  I'm one very lucky girl..

Today we decide if they'll discharge me, as my next infusion will already be on Tuesday, so we'll see what the great O says.   I just wanted to thank all of of you for your love, light, and inspiration to continue one this path.   It isn't easy and it's so much more able and desirable when you have a  cheering section behind you.  So, I can't thank you all enough.  We will sees what the next week brings, but I will be sure to keep things update so people are aware of what is going on.    In addition people asking to visit; however, it the last thing I wasn't is get more sick so if you have even a a runny nose, its just not a a good idea for now.  

You can give a a call to me or Rich though and see if a a day is a a good day to visit as as I am open to seeing your beautiful faces.  

Alright, I believe all is all for now, will update soon.
Love you all,
xoxoxoxo
B.

Finally a bit of an an update.

It's been a a while, and I apologize just so much has gone on between different treatments -none have been working unfortunately, so the disease has continued to grow.  At this point between a thrush, an UTI, and in creased disease we've decided to admit me to the hospital and take care of everything.

At this point we are now attempting the Bendamustine +SGN35 Trial to attempt to get things under control.  The scary part about the SGN is that I was part of the phase ONE years ago, and had horrible, horrible reactions.  So we are preparing for the second portion of this trial, as an army.   O has done his research, from one of of my previous nurseses, care takers will be in place, and I'm finally on the north side of the floor for oncology medical (best nurses), opppososed to onc - surgery who hasn't seen these reactions.

We are truly hoping this trial will do the job, I'm no sure what else we have on the list have this one…. but it's leading up to the the allo-tranplant we are planning for.

So that is what we have for now.  I will write more again when I can,
Sending Love,
B.