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.

let's go, twenty thirteen.

Since November, I celebrated and survived packing, moving, unpacking, holidays in a new city, a case of face-shingles, a trip to New England, celebrating a good college friend's wedding, new years, and prepping for my first interview.

The year is starting off with a huge and exciting bang, and an ESR/SED rate of SIX.  Normalcy is starting to set in again, and goodness it feels so good.  Here's to lucky (twenty) thirteen with lots of health and happiness!

The beginnings of our new home..

My crazy shingles while packing up my old apartment.  

It's NEVER dull being a cancer patient :)

For HLers: If you suspect any form of odd bumps/shingles, make sure to call your onc immediately. 

Thankfully this cleared up within three weeks... 

Thankfully, I was able to put on a good face for the wedding 

since it all cleared after some quick emergency doctor visits and meds!

New Year's Wedding!

One giggly, amazing couple 

College loves..

Here's to remembering and honoring those that we lost in twenty twelve,
and celebrating life to fullest in their memory, during twenty thirteen.

love,
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.

-----

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. 

Two thumbs up for Revlimid

Yesterday we received scan results after being treated with Revlimid for two months...

With two thumbs up from Dr. O'connor and my wonderful partner, we were all excited to hear that the Revlimid is not only working, but it is working quickly, and very well against my tumors.   All of my nodes have decreased significant amounts.  None of them are 'stable' or have 'mixed' results.  For the first time in a while, everything is decreasing from starting with 3-4 cm nodes before treatment, to now only having nodes between .5 and 1.8 cms.  And for those taking note, my SED rate is down to 15 (hot damn, it's in normal healthy range). We are absolutely thrilled. And although there has been a lot of loss lately in the HL community and on the east coast, we take this small kernel of good news and are running with it...

Revlimid is suppose to be a slow-acting drug on 20mgs.  So all of us were a bit surprised that there was such a dramatic decrease since I was treated with 10mgs over a period of two months. Thankfully, almost all of my side effects have subsided and I am now tolerating the drug much better, except for some neuropathy and fatigue.  Due to these factors, O'connor believes this will be a very positive drug for my future.  

After the last six months, it finally feels like we are leaving behind the roller coaster of unknowns and are approaching stability and some form of normalcy again.  It hasn't quite sunk in yet, but we will take it. 

Here's to being on the other side of things!

Sending so much love to all of you,

B. 

Hello October!

October brings crisp fall days, boots, pumpkin spice lattes, big sweaters, apple picking, hay rides, and thoughts of Adrienne..

This morning started off with thinking about one of the toughest, bravest warriors and her mother, Adrienne and Alison.  Adrienne survived with HL for over thirteen years, and is probably one of the primary reasons why I, and so many other warriors are alive today.  She showed us it was possible to live with this disease as a chronic illness and still achieve your life goals.  Today marks three years since Adrienne's passing, and her presence continues to impact my life and my ability to continue this lifestyle -- just as she did.  So, today we remember Adrienne and also send love to her entire family, especially her mother Alison, who has shares/d invaluable experiences and information to help other cancer patients in this journey. Today, we remember Adrienne.

Without Adrienne and Alison, I wouldn't have met with Dr. O'connor today -- the man and my oncology team that has kept me alive for almost six years with this illness.  It felt almost fitting that Dr. O, Ellen, and I of all days, were within the same four walls.

This meeting/check-up consisted of discussing these rare and intense side effects that have mostly subsided since decreasing my dose of Revlimid from 20mgs to 10mgs.  At this point on the 10mgs I am left with the following:

Revlimid side effect (10mgs)s:

• Neuropathy.  We are treating this with Cymbalta.  At this point I am completely numb in my toes, the padding of my feet, as well as the tips of my fingers.  In addition to Cymbalta I will also be researching Acupressurists in the Bucks County area.  

• Pain levels.  My body-pain/aches have definitely decreased.  Instead of being at a seven on a one through ten scale, I'm now around a three.  Unfortunately still in pain, but better than before.  Taking IBprofin everyday is taking the edge away.  In addition, I have shooting pain about 5-6 hours after taking a dose of Revlimid within my upper chest (the reason for my hospitalization last week when we thought it was a blood clot), and when I take a very deep breath.  

         O'conner's hypothesis is that this is tumor lysis syndrome, a break down of cancer cells dying that  
         can cause intense pain where the tumors are located.  If this is a correct diagnosis than the pain
         will decrease over time as the tumor cells begin to die off, since there will not be a large disease
         burden.

• Hair thinning, I'm losing very few strands a day, but still when I wash my hair, I am losing hair.  Mentally this is never a positive thing for someone who's lost their hair several times, but I'm trying not to focus on it at the moment. 

My team and I have decided I will continue on the 10 mgs of Revlimid indefinitely if I can tolerate the pain and neuropathy or they subside over time.  In addition, I scheduled a port surgery to replace my old portacatch with a new power portacath so my tender arms never have to be touched again for  imaging/scans! Although it's never fun to get surgery, I am super excited to not have to endure anymore needle sticks, hours of waiting for a nurse to access a viable vein, or the bruising that comes from missing my veins time after time.  

This new port, we will be able to use for all of my scans, blood work, and anything else that needs a vein access.  Some twenty-eight year olds get a new car and are excited, I'm off to receive a new port-a-cath, and I seriously can't wait. Other positive news to relay is that I am back up to 122 pounds.  I thank everyone who sent over or dropped off food as it obviously stuck, and I am almost back to my normal weight, all good things! 

Lastly, if you would like to financially help in anyway, you live in the Bucks County/Philadelphia area and you would like to book a family, engagement or budoir professional photo shoot, my good and dear friend, Ms. Jillian Bauer, is running a special now through December 31st.  Please check her out as part of the proceeds are a contribution towards my medical/treatment costs.  Please click here for more details. 

Here's to October, the crispness of fall, and Adrienne.

Sending Love,

B! 

Adjusting to Revlimid

After a whole week on 10 mgs of Revlimid starting on the 11th of this month, I was sure we would be coasting on this treatment.  On the 15th, my oncology team pushed the drug dosage up to 20 mgs, and things were good for a few days...I even had enough energy to do yoga, and two physical therapy sessions and to top it off a trip to the beach.

Unfortunately, on Saturday morning I woke up with shooting pain in my chest, extending into my neck, back and throughout my left arm.  To add to it, I was having a ridiculously hard time breathing in deep -- and when I did, there was a substantial amount of pain.  Being a cancer patient, we have a higher risk of throwing  a blood clot, and these symptoms did not feel good, at all.  So off I went to the ER, and was admitted to the hospital to run tests, a VQ and a CT, which luckily resulted in positive results, my lungs were clear and there were no clots to be seen. 

The ER and hospital visit took three times as long as it should of, and many arm sticks, due to not being able to access a vein, at the end of this visit my family, my partner and I all decided it is time for a new port.  The new ports you can access and use for CT's, mine at this point you cannot, and my veins in my arms have taken quite a beating over the last six years.  If you saw me today, and didn't know I was a cancer patient, I'd swear you'd think I was using heroin.  It's not a good look.  We are hoping to schedule surgery once this treatment becomes more stable. 

The muscular pain around my chest continued, the painful deep breathing continues, and after being released, new side effects/symptoms started to arise.  So far these have been side effects I've experienced on the 20 mgs of Revlimid:

My side effects of Revlimid:

• Mouth Sores
• GI issues
• Muscular cramps/spasms (primarily in feet, legs, hands)
• Fingers/Jaw locking
• Neuropathy 
• Due to jaw spasms and locking, slurring of some words
• Thinning of Hair
• Dry Mouth
• Back Pain
• Feet/Legs falling asleep within minutes
• Full body tension/pain/aching after sitting for more than an hour, and just to note I am usually incredibly pain tolerant but my muscles are so incredibly tender, that just a soft touch sends my body into a level of pain I haven't experienced since SGN

After two days in the hospital, and these symptoms on top of it, especially the joints locking and spasming/cramping which is a side effect of Revlimid that some patients do get, I have spent the last two days in bed battling my muscles.  And I am one tired pup, that still has one more week of these drugs to finish up before the end of my cycle.  Although mentally I know this will be the roughest part of the treatment, figuring out all the kinks and letting my body adjust, I am feeling a bit drained and exhausted.

Last night it was decided that I would decrease the drug back down to 10 mgs in hopes that some of these side effects lessen.  This morning I'm grateful that my hands are no longer cramping and locking anymore; however my neuropathy is consistent in my toes, and my calves continue to spasm and cramp anytime I'm not moving.

I am, with everything I have trying to be patient.  It has been a long time since I've been on a real drug, and a part of me almost forgot what it was like.  This will take some time and adjustments with medications. I'm hoping staying on the lower dose will be more of a relief -- time will tell.  

Here's to the lower dose being the key to a hopefully, very boring week,
and of course, a sweet New Year.

Sending Love and Light,

B. 

Ebb and Flow...

As September awakens it will definitely be a huge transition month.  However in some ways, that is the life of a cancer patient.  Ebb and flow, push and pull -- finding the balance between the worlds we straddle. Before the latest news I was preparing/hoping for full time work, a move within the next few weeks, and tying up loose ends here in good old Doylestown, awaiting... some kind of movement into my professional life.

The goals are all still the same, but sometimes priorities have to be viewed differently and one must pause.  So here I am, doing just that.  Now that I am officially off the steroid load after four days of non-stop eating, and a hard, hard crash today.  I begin focus on yoga, action, peace, nourishment/food as much as possible to rid my body of the immobility that surrounded it throughout the last two months.  More than not though, I just wish my body would catch up with my mind -- here I am ready to be on the move, but a few other things need to transpire before I catapult my way into the future: whatever that may be.  

Fortunately, my "B" symptoms of night sweats and fevers have subsided due to the steroids.  And our hopes are obviously that they stay this way.  It appears with paper work in check I will start the Revlimid, also known as Lenalidomide (new drug of choice) on September 10th.  Most likely it will take 2-4 weeks for my body to regulate to see what I am capable of handling on a day to day routine and basis (work, exercise, side effects, ect).  This is the 'patient' part of being a cancer patient where I'd like to push the fast forward button -- but we all can't be so lucky. It's where my practice in this world, literally takes the most patience out of me...

My hope is that with the opening of Fall, I will find a position that suits my body, my needs, and that this small oral pill will not even conflict with the daily life I planned out for myself since graduation.  So here is hoping for new beginnings on September 10th... and a very, gentle, loving transition into Autumn. 

A few quick notes as we close down summer: 

• We are also taking food donations/drop and go meals throughout the next month to buff me up as I rebound, so please email me by clicking here if you're interested in contributing

•  If you would like to continue to read this blog, once it is private in October, please click here. 

• Lastly, a huge, huge thank you for all who contributed to our travels to Texas.  Again, if it weren't for each of you, I definitely would not be continuing treatment, and venturing into the fall with such high hopes.

above all else, e.e. cummings reminds us:

life (who never grows old) is 
always beautiful and that
nobody beautiful ever hurries


Sending Love and Light,

B. 

Dx: Cancer, Kidney Infection R/O: Everything else

PLEASE prepare for a long post, I've again promised a lot of updates to many people and want to supply as much information as possible so I don't have to continue to update through every phone call.  It makes my job so much easier when people read these posts so I thank you from the bottom of my heart for reading, and if you want to just get to the meat and potatoes (results and plans) of the post jump to the bulleted portion.  On another quick note, in about a month I will be making this blog private, if you would like to continue to read 'true beauty' please click here and read directions.

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First and foremost I would just like to thank you all once again for your unwavering support.  I continue to realize each time there is a bump in the road I suddenly have this army of individuals cheering for me, sending me love and positive vibes, and just being there.  It's an amazing, amazing feeling to not just be cared for by your inner circle of family and friends but by the HL community, and another entire extension of friends that I have met along my different paths... I become overwhelmed, and although I do not respond to each one of you I hope you all know that I hear you, I hear everything you write or say.

To also preface this post before some negative news, I would like to ensure everyone that although some of these new bumps in the road are not what we hoped for, it could not have come at a better time.  I just completed my Master's degree in July.  I ventured through a whole year of studies and internship and finally finished my degree. A degree where I've once again been blessed to be connected with a few amazing women who I know will call my life-long friends..

These symptoms occurred just as Rich and I were coming home from our amazing and life-changing vacation where I was in zero pain and able to push my body to some of my best physical capabilities... I am so thankful that my symptoms did not occur till the moment we started packing our bags for home.  We were able to totally suck the marrow out of that trip like no other, and I am so, so grateful for NJCASA, Kim and Joel for making this trip possible for me and Rich.  We would never have been able to experience such a trip without the generosity and kindness of incredible strangers and a beautiful organization such as NJCASA.

I'm also grateful that (some) things happen for a reason, that I haven't jumped into a position yet and now I have the time I need to have to recover from the last two months and prepare for what is to come before I start venturing into the working world.  To have time to mentally recharge myself and renourish my mind and body before I take these next steps.

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So what are the next steps? 
Here is a break down of what happened this week:

• Once I left O'connors office on Monday, he took me off all my medications except for Tylenol and Kytril (anti-nausua medications).  If there was an infection to be found by Thurs/Fri we needed to make it happen and being on antibiotics was not going to help that cause.

• I'm not sure why my symptoms shifted after this -- but they did, and I'm incredibly thankful that they happened this week, while I was in NYC and under O's care, and have the ability to see him twice in one week, now how many O patients can say that! :) 

• The symptom switch: Monday came with a huge surprise: my pain started decreasing.  After a miserable weekend of pain, all of a sudden poof --  they stopped completely.  It was such a relief; however, the trade off was 24/7 fevers low and high up to 102.2 some nights, and they kicked my ass. Even with Tylenol there wasn't much relief at times, but there was one afternoon Rich and I were able to have at least one lunch outside of the hotel and Hope Lodge. 

•  Along with fevers, came the sweating.  At first I couldn't differentiate if my sweating was due to the culmination of fevers happening towards the end of the day/night and they were just breaking.  Or if it was that classic B Hodgkin's symptom of "night sweats" by Wednesday night I was pretty convinced that these were night sweats and that this was being caused by the cancer.  However, we all tried to to keep an open mind until the Indium, WBC scan happened on Thurs/Friday.

• After a long, long day on Thursday and Friday with several appointments in and out of the hospital for this specific scan (taking blood, waiting four hours, reinfusing the blood with trackers, then scanning twice on Friday morning and an appointment with O'connor Friday afternoon, and more blood work), it was all done and we had the best answers that the team could come up with..

The Diagnosis: It was very obvious early in the summer I did have a Kidney infection with classic symptoms; however, with previously being on anti-bitotics for an UTI a culture would not be able to pick up on an infection.  Therefore, we conclude that there was an infection somewhere in my kidney area that took time and lots of treatment to kill, which looks like it (hopefully) subsided this week.  This led us to the fact that I had a differential diagnosis, and the next one was obviously the cancer.

We took a CT about a month ago, and there was not any progression; however I do and always had disease burden going into this trial.  Scan by scan, my tumors have grown by millimeters, but not enough to qualify as progression.  In addition our focus is always quality of life, which has continued well into 14 months of treatment on the EBV+ Trial. Again, I can not even begin to state how grateful I have been for these fourteen months. So, so grateful.

So, our conclusion.  I am a complex case, no one can deny that with a previous kidney disease in 2002, to almost six years of cancer, earning a Master's Degree, completing two internships -- and still kicking ass and looking cute doing it.  I mean really how many people can do that? ;) In the end, my body could just be tired of handling this disease burden and is ready for my tumors to shrink a bit more before these "B symptoms" (night sweats, fevers) die down.  Or it could have been the prefect storm: My EBV trial produces lots of inflammation, I had inflammation at one point during my Kidney Infection these past few months, and the cancer itself could all have combined to what we are looking at now.  We will never know, all we can do is take the pieces of the puzzle we do have and put them together to form a plan to shrink the cancer.

Our Plan: Unfortunately during this process I have dropped 10 lbs since June.  Way too much for me. Putting on weight is our number one goal and a BIG mental recovery.  Not knowing these last two months has been the worst form of torture for any kind of patient -- all of us know this, the unknown is the scariest part.  Now that we have a plan, I have one hundred times more secure and I can feel my spark turning into a flame again to push on, but after one straight month of scans, I need food, no doctors, and time to heal.

Step One: Therefore, O'connor has put me on steroids this accomplishes several things: Steroids cuts inflammation, it will cut the lymphoma temporarily. Steroids increases hunger (and crazy unwanted emotions!), in turn, I've been eating like a starving person these last two days, it's been incredible.  Steroids will give me time to recover physically and put on hopefully another five pounds before our next step: treatment.  Steroids will also cut the fevers and night sweats.  All in all a good first step.

Step Two: In two weeks we will start chemotherapy called Revlimid.  NOT a clinical trial (wahooo!) This is an approved drug for myelodysplastic syndrome, myeloma (cancer of the bone marrow) and now is being entered into the NHL and HL world for treatment.

This drug was previously known as Lenalidomide, that some women might be aware of in the 60's and 70's to be given to those in pregnancy and unfortunately their children ended up having major birth defects. Revlimid/Lenalidomide is in a class of medications called immunomodulatory agents. It works by helping 
the bone marrow to produce normal blood cells and by killing abnormal cells in the bone marrow.

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So kids, that is the plan for now.  I am fortunate that I have an amazing network of refractory HLers that have confirmed that this is a semi-normal treatment regimen.  Meaning that they are able to work full-time on it with minimal side effects.  For now we will take this next month or two and see how things shake out in hopes that I can take the next steps of my life as planned.  

Although I am exhausted and everyone is mentally drained, we have a plan.  And due to the lack of control with this disease, a plan is something very valuable to hold on to during these unknown times.  After Friday's appointment I feel much more mentally at ease and now know what I have to do: eat, eat, and eat before we start round 15.  

So what can you do? A LOT of people in the area have been asking just that.  Although everyone knows I'm pretty stubborn in allowing anyone to help, I'm budging on this one because I know how crucial it is.  Something that could be very useful to me would be a "drop and go meal."  If anyone out there enjoys to cook or would be willing to drop off a meal (and know I probably won't be up to chatting) but could just drop it on the doorstep, whether I am here or not and let me know when they'd like to drop it so someone can bring it in, it would be a huge, HUGE help.  

The best way to do this so I don't get ambushed with three baked zits in one week would be to email me. Let me know what you'd like to make and what day or time you'd like to drop it off.  I can email you back with my address and a confirmation.  In situations like this, it is always so wonderful to give two options (whether that be meals or times to drop off).  However in the end I am thankful no matter what time of day or what meal, and I will make it work.  Just to note though: your love and support is all I really need but for those who are INSISTENT :) on doing something for me, this would be much more beneficial in the long run for my body.

Okay Kids, that is about all for now.  Again, it has been a miserable two months to say the least.  But with 
a plan in place and steroids in my tummy I feel stronger already, a little crazy...

But still stronger...

Sending love and light
to each and every one of you,

xoxo,
B. 

Destination: Texas, Frequent Flyer Miles needed!

Twenty twelve is starting out with a BANG.  The Texas EBV+ positive vaccine is working and we are set to begin to make dates for flights! Therefore my partner and I are desperate to attempt to fly both of us down this round since I will be flying out of Houston the same day as my infusion, and probably won't be feeling too well.  Dr. Bollard has decided that I will receive these infusions every six weeks until the cancer begins to progress... we're hoping I will be able to stay this for a long time coming, since this vaccine does not cause ANY side effects nor is there any toxicity levels: the truth is, I haven't felt this good since I was twenty-two, it's so amazing to finally have my life back :)

Anyway! Back on topic -- Due to my lovely internship schedule, I will have to fly down on a Sunday in January,  infuse on a Monday morning, and fly back Monday afternoon/evening, just in time to intern on Tuesday morning.  The second round will be held in March, and the third round in April. Thus, having Rich with me on that Monday would be crucial if we are able to find flights for both of us.  But if not, I have traveled down to TX alone, and can surely do it again!


In turn, we are desperately asking anyone who is out there if they would be willing to donate their frequent flyer miles to my cause.  We are looking to fly from Philadelphia airport to Houston, TX and flying back from Houston, TX to Philadelphia.  If you are able to donate, please email me at: RebekahFurey@mac.com.  In turn, we are so, so deeply appreciative of all of your generosity and kindness in even thinking of helping me through this cancer journey and on to a treatment that is working...


If you would like to help, but do not have frequent flyer miles, we are also in need of money for food, lodging, and transportation while we are in Texas over the next six months -- please feel free to click on the 'Donate' button to the right of your screen under 'Houston Treatment Donations.' -- every penny helps us on these trips, and even a 3-5 dollar donation makes a difference -- Rich will tell you this, because if we have enough money, we splurge on buying a piece of the most heavenly pecan pie we've ever tasted at Goode's BBQ down in the heart of Houston :)

Luckily, after this sudden trip we will have the future dates of infusions, months in advance and therefore affording and scheduling flights will be a bit easier than this month, and the last two infusions.

I can't even begin to thank those that have made contributions and donations for food and lodging, for this round, I will always be forever in debt to each of you for making this treatment possible.  Thank you, Thank you, Thank you...

Again, I am forever grateful to each of you for your emotional support all these years, but now, on top of that, so many of you have taken the time and energy to write, donate, and support me through this trial in Texas and I honestly could never thank you all enough.

Love and Light my loves!
And Happiest of Twenty-Twelve to all of you!

B.

My Decembers.

Beautiful is such a certainty,
but uncertainty is more beautiful.

-Wislawa Szymborska

December has always, always been an incredible mixed bag of emotions.  It's almost the way we see the holidays, there are so many wonderful, beautiful, amazing components to the winter holidays: the scents of ever-greens, cinnamon, cookies baking in the oven, latkes in oil, burning candles, snow.  Some of us are near family members that we cherish, others who are far away send packages and greeting cards to the ones we love.  With that said, there is also the constant stress of completing projects at work, little to no vacation time, pressure of gifts, snowy roads, sleet, ice and more.  As I said, it's a huge, messy, but wonderful mixed bag.  And that at the moment is how I see most of my Decembers since 2006.

This December will mark five whole years since my initial diagnosis of Hodgkin's Lymphoma.  

  

Although there is a huge part of me that is so grateful to still be here five years after this diagnosis, through many lines of treatments, small surgeries, traveling, clinical trials, different oncologists, and a whole realm of other obstacles and forms of adversity.  There is a larger part that accepts and acknowledges that five years of my adult life has been affected by this illness.  Since I was 22, entering the work force this is all I have known through grad school and attempting to formulate a job for myself that can be accomplished while tending to a chronic illness.  Although I see the beauty in every piece of pain I experience it is remarkable to think that five whole years have now passed with cancer continuously being in my body.  And thankfully in these moments, those who do not know me, could never even comprehend the depths of this disease that soak through my skin.

Five Decembers ago was the start of an unwaivering black cloud that began to hang over my amazing family during the holidays. In December of 2006, I was diagnosed with Lymphoma. December of 2007 was my relapse and beginning stages of transplant. December 2008 after accepting that my transplant failed and I would now be on clinical trials the rest of my life, my first attempt at third line treatment failed and the cancer was progressing. December 2009, my family and I spent part of Chanukah and the entire week around Christmas at NYU hospital since my third clinical trial had now failed, taking tons of pounds off my tiny body, which resulted in leaving Boston, a beloved grad program, my final internship and being bed-ridden till March of 2010.  Thankfully, last year was one of the first, and the best holidays seasons I had ever experienced.  The daunting black cloud lifted and I hit a small remission which enabled me to run away for the holidays to my favorite part of the world: Greece, with wonderful friends and my brother.  

However, it almost feels as though my body is conditioned to receive some negative news around this time, and somehow a scan always falls right in the midst of the holiday season, this year is no different with a PET/CT scan a day before the first night of Chanukah, and a few days before Christmas on 12/19.

To say my Decembers are a struggle would be an understatement. I am grateful, happy, and pleased of how well my recovery has been in the last two years.  I do not in the least bit take any of my days, hours, or minutes for granted.  However, when looking back it is difficult to see passed the patterns that reveal themselves over and over again.  It is obviously my hope, just as I did last year, to break this cycle and to start enjoying the holiday season.  To take in more of the smells, lights, tastes, and extra time with family and friends instead of fearing the holidays.  But it is a very large and difficult task to do so with grace and patience. 

These Decembers, a mixed bag of gratefulness, hopes and fears can be daunting.  However, these Decembers are mine and only mine to speak of and experience. Whether they were heartbreaking or heavenly, I am still here living them.  In turn, I have proven many doctors, nurses and fellows wrong when fear, uncertainty and the unknown in their faces resulted in differing prognoses and predictions of my life expectancies.  Thus, it is the unknown that gives hope not only for me to look back ten more Decembers from now and write these same words, but to look forward to this December.  Because uncertainty is so much more beautiful than finality, uncertainty gives hope, opportunity for growth, and the possibility of change.  And above all, uncertainty provides the possibility that even after five years of adversity you and I still have the ability to smell cinnamon, ever-greens and snow in our Decembers. 

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I am sending love and light to all of you this holiday season, a bright December to each of you, 

and all my heart and more,

b.