Transplant Meetings & Flight Donations

Rich and I are planning an informative allo-transplant meeting at the best transplant facility in the world.  We want to do some research, become more informed with allo (donor) transplants, and familiarize ourselves with the types of transplants and the protocols associated with them.  We want to stay ahead of the game, dot our I's and cross our T's when it comes to the future.  To do this thoroughly we need to go to the Fred Hutchinson Cancer Research Center in Seattle, Washington.

We are hoping to make this trip in mid to late June and are looking for the amazing kindness of strangers and friends to possibly donate two round trip tickets/their frequent flyer miles, from Newark to Seattle this summer.  If you cannot donate an entire flight, but would like to help out in someway when we do go to Seattle, feel free to click on the paypal account to your right. (scroll down the page, and look to the right of the blog, where you see "Donations to Treatment Travel" and click on the big yellow button that says DONATE!)  Every penny helps -- trust me.

If you know of anyone, or you yourself could possibly consider donating.
Please email me at:  RebekahFurey@mac.com

We unfortunately will not be able to book flights for three more weeks due to figuring out work and treatment schedules.  But we are hoping to figure out the logistics ahead of time.

Also, if you have been treated at the Hutch for an allo-transplant, I would love to personally hear from you.  Just a small email (email address above) would be incredible, as I would really appreciate anyone who could share personal experience.

I thank you in advance everyone, those who send their love, positive energy, and so much more.  And to those who even consider or think about this donation, I sincerely cannot even begin to thank you for your generosity, huge heart, and the kindness that lays within you.

Sending Love,
B

a whole new meaning

Birthdays have a whole new meaning when you have to fight so hard to get to them. 
-- Jacinta Allen, caregiver/fellow friend

March ninth confirmed that I have survived and thrived on this earth for twenty eight years, as I entered my twenty ninth birthday.  The weeks leading up to this celebratory week were ones filled with exhaustion, frustration, fatigue, weight loss, low counts, anemia, fear, anxiety, instability, and disappointment.  With blood counts changing results just as quickly as a flip of a coin, the numbers being different every day, Revlimid causing issues, high heart rates, low blood pressures, and my hemoglobin tanking... something had to give.

I had planned to vacation with my other half for a few days, and then have a girls weekend with my three best friends in Florida for my birthday.  My amazing, generous, and kind Uncle Jay and Aunt Bob, generously allow me to go down to their property in March and receive a mental break -- that all of us, cancer patients so desperately need.  For months, this was the break I had been holding onto.  However, due to all the obstacles from this month, I feared that I would not have any energy to even enjoy myself in the sun with my love or friends.  Sadness ensued.

Two days before we left, however, O made an important call.  He took me off the Revlimid, I (between NYC and PA) received two units of blood, and was put on a high dose of steroids.  And just like that, something gave.  The shift began.

The week in Florida between the steroids, sun, seafood, people who I love more than life itself, smell of the ocean, being on the harbor, snorkeling, eating, eating, and more eating.  Was literally one of the best weeks of my life this year.  In fact, when I sat down with my NP this week she asked how my trip was, and through telling her I literally couldn't stop crying of grateful tears.  As both her and Rich looked at me probably thinking, 'what the heck is this woman crying about?"  It was just such an amazing trip and even thinking about it overwhelms me with appreciation and gratitude.

It has been a long road since June, between the relapse last summer, getting on Revlimid, discontinuing Revlimid, and now facing this shift.   I soaked up every meal, every moment, every piece of sunshine, conversation, sound of music, and smile I possibly could.  And with that, I started to regain some strength.  With the steroids I gained five pounds in seven days.  I'm so grateful that my friends helped me continue to eat (even though they felt stuffed most meals!).  Because with every pound, I felt stronger, refreshed, re-energized, renewed.  And with every day that was spent with my love and friends from childhood, I began to feel like my old self again.   I firmly believe that so much of my recovery is always due to people who continue to lift me higher throughout all of this adversity, and for that, I am so grateful.

By the end of the week, I felt clarity and strength.  Two visions I did not have in my mind before this trip.  Which brings us to these next two weeks, and what is to come.  Since returning from FL renewed, I met with O and the team on Wednesday for a bone marrow biopsy and blood tests.  For this week, everything appears normal (this is wonderful); however, we know how easily things can change.  We discussed next steps due to the fact that we both agree Revlimid just hasn't agreed with me and my quality of life, and we will have a PET/CT scan next week to see how large my tumor burden appears in my body.  Currently (due to steroids for a week) my SED rate is 8, but most likely that will not hold for much longer.

Florida reminded me how to breathe again, how to take a step back when you are in the midst of hell and can not seem to figure a way to look elsewhere.  Both my partner and I were beginning to dictate our lives only around doctors appointments, tests, meds, ect.  We were losing sight of the mental piece, taking a breath, and stepping back to regain clarity over the situation.   Luckily, I have wonderful family who encourages us to do just that.

Now I am five pounds heavier (117lbs!), filled with beautiful memories, energy, and the ability to make informed decisions over our next steps.  We will PET/CT on Wednesday, and most likely begin a small-baby dose of Bendamustine to bridge to a CD30 Trial at Baylor College of Medicine, similar to the EBV+ Trial that I participated in over a year ago.  I welcome these changes, am grateful to put Revlimid behind us, and look forward to deep breaths, more sunshine, and a calmness I haven't felt in quite a while.

I ate during 90 percent of this trip and it was amazing.

Prepping for our snorkel day... 

Water-taxi to Peanut Island, obviously deep in thought :)

Peanut Island

A windy-St. Patty's Day...

For those who have been asking and keeping tabs on me, I apologize for this delayed post and thank you for checking in about my health.  I am so grateful for the HL community and support.  Here's to a spring filled with great change, deep breaths and smiles.

Sending Love,
B.

Marrow is the word for the week.

A lot of people have been asking what has transpired in the last few weeks.  Unfortunately I don't have too much motivation to write or too much good news, just because we are in such a limbo and I despise writing about 'in between' periods where we do not have any answers.

Once again this has been a rather rough month (an understatement).  And although everything appears normal between my thyroid, IGG, and so many other outside tests;  my blood counts are still not rebounding. In fact, my HGB (Hemoglobin) in the last two weeks has slowly decreased (8.5 to 8.3) almost in need of a blood transfusion. 

Yesterday my partner and I ventured into the city so I could get a CBC (blood test).  This was due to the fact that every single hospital in NJ will NOT access my port for a blood draw with an out of state physician's script.  The only way around this would be to relinquish my care with Dr. O and his team and start with an oncologist who has never even seen a refractory HLer before.  Lovely.  So for now, Rich and I hop on a bus/train, and head into the city for a blood test.  Luckily though, it has unfolded this way, especially this week.  When I came and met with my NP, my heart rate was 130, and I did not even register on the blood pressure machine.  Immediately we ordered two liters of fluids, and ran my blood tests that now cost $14 dollars a pop in travel.  I love New Jersey ( sarcasm;) ).  

Unfortunately the blood tests did not reveal what we hoped. Everything is slowly moving down that should be moving up, and vice versa. This also means, we're not quite sure what we are dealing with.  Cancer is one thing, but I have never had difficulty with my blood counts over several months.  From the hospitalization with tons of antibiotics, to a question of possible bone marrow failure (my greatest and darkest fear even above cancer), to hemolytic anemia (Dr. O's hunch).  We don't really know what we're dealing with. 

I've currently been off treatment for over a month now.  And with an attempt at a getaway in Florida for my twenty-ninth birthday, we are expediting some things for next week.  This includes a bone marrow biopsy on Monday to see what the heck is going on in my marrow to cause such sluggish blood counts, and a hopeful transfusion since I am running on fumes.  If you believe in positive vibes of any kind I ask you (and I don't do this very often, but I do believe in positive energy), I ask you to send some my way that this has nothing to do with bone marrow failure.  Anything else, I know it will be some form of treatment or care and it will be a somewhat easy fix; however, bone marrow failure is another level of illness that no one in this ball game is ready for.  So, I would really appreciate your thoughts.  Unfortunately this also means I need to put a hold on Physical Therapy, Yoga, and any intense activities just to be cautious.   

In other news, I am trying to suck all the marrow out of life by spending my good moments with my favorite people and continue to be grateful for what I can do despite these small hiccups.  Just a bit ironic since it's my bone marrow that are these hiccups, right? ;)  

So despite all of this I've focused on the glimmers of light around me.  This month I've had more time to spend with my grandmother who recently moved to Montclair, NJ.  Was sent a beautiful and amazing package (with a frozen pizza and desert!) by one of my favorite caregivers and super-mom, Carrie.  Who is now sick with the flu herself (so send some good energy her way too!).  I was invited by my dear friend Manny to go see Cooper Anderson Live at the end of next week and am SO pumped for this.

Rich and I squeezed in two solid days in NYC and ate like queens and kings since we had the best restaurant recommendations in the city from RPS.  We also were fortunate enough to see TWO musicals on broadway this week (I swear, broadway is one of the few places I just forget everything and it's such a breath of fresh air).  During my doctor's visit yesterday I was able to meet, chat and laugh with Princeton's power-couple Alex and Brannan.  And today, one of Rich's oldest friends came into Montclair to spend the afternoon with us so we could finally eat at one of our local restaurants.  Just writing this warms my heart, knowing how full my life really is in so many ways...

Brilliant details at dinner...

One curly-haired girl...

Wicked's Stage (now one of my all time favorite musicals)

Just us goofing around in NYC before Broadway...

Even with the unknown, the fatigue, exhaustion, lightheadedness, weakness, and dropping counts. I have pushed my body a bit harder so I can hold on to these moments, because they breathe life back into me and nurture me, unlike any medication or treatment could.  And I'm willing to push for that. 

Bone marrow biopsy on Monday, hopeful results early next week. 

Sending Love and Gentle Hugs,

B. 

Caregiver Group

If you are a Caregiver of someone who has Hodgkin's Lymphoma (especially relapsed or refractory HL) I highly encourage you to join this new start up group.  I, and the HL community found that there is a huge lack of caregiver support in the cancer world, and we want to make sure all of you have it!

Please come and join, ask questions, and know you're not alone.

Click here to join.

Sending Love,

B.

A Plan in Place

Since the not so fun six day hospitalization at New York Presbyterian...

I just haven't felt that 'well.' I've been giving myself nueprogen shots every night for five nights to boost up my blood count since I was neutropenic when I left the hospital.  And since leaving I've just felt incredibly worn down (says the woman who had three brutal infections and hardly any food at the hospital).  I know my body should be feeling worn down, but it just didn't feel as if it was rebounding.  So we made a plan to have a check-in with Dr. O this week.

My lovely entourage (the moms and my other half) ventured all together to visit with my amazing medical team to figure out what our next set of steps were.  I have been dropping weight, off the Revlimid since the hospitalization, and we needed some direction. 

I've unfortunately lost a total of 10 lbs since my hospitalization.  This is from the unfortunate and awful hospital food that I honestly just did not eat, a combination of all the IV antibiotics making me naseaus, and just focusing on the infections for so long.  Due to this major lack of muscle and body fat (I'm down to 115 lbs, normal weight is 125).  Dr. O has prescribed marisol and has ordered me to eat as much as my body can.  I need nutrients and a strong body to keep myself moving, and right now we're in a holding pattern until I get this weight back on.  Luckily Rich has been making milkshakes for me non stop and cooking tons and tons of food.  I just wish my stomach would want some of it -- but we're doing the best we can.  

Dr. O also wanted to test a few other blood levels between my thyroid, and immunoglobulins.  Immunoglobulins (say that ten times fast) measures known antibodies in your blood.  Antibodies are substances made by the body's immune system in response to bacteria, viruses, fungus, animal dander, or cancer cells. Antibodies attach to the foreign substances so the immune system can destroy them.  This will help figure out some keys into why I might be having so many infections -- due to my IGG count.  If we can figure out a specific reason why my immune system is floundering than we have the ability to correct it through supplementational therapy.  If not -- if it is a general immune issue, we won't have the same luck and therefore might not be able to continue the drug.  

Right now we are taking it a step at a time.  In the next two weeks, we will follow my blood counts, including my IGG, may unfortunately have to have a bone marrow biopsy in there somewhere (ouch!), and then we will meet again to pow wow and see our findings.  Dr. O is hopeful that after the weight is back on and these blood tests reveal some answers that we should hopefully be able to begin the drug again and let it get back killing this cancer.  

For now though I have only been ordered to take my antibiotics from all of my past three infections, eat like it's my job, rest, and begin physical therapy again to gain back strength. A plan in finally back in place, which puts my mind and body at ease.  So here's to getting back on track, slowly -- but surely.  

Sending love,

B. 

Hear me Roar.

Throughout this month I've been holding my breath thinking "This will pass... it will pass."  From before the holidays with the shingles, to a recent boiley-chest rash with absolutely zero cause or reasoning to my most recent set-back at New York Presbyterian for six days.  I'm still waiting for it to pass.

I also attempt to set small goals for myself every month: cooking a new meal, buying something new/decorating the apartment, applying for jobs, going to the gym 4-5 times a week, attempting to find anew yoga studio.  It didn't feel like there was that much on my plate that month. But my body was telling me otherwise.

Revlimid has been a g-dsend with it's nightly dosing (i just pop one pill a night!), zero infusions, and hardly any side effects except my immune system going bizerk. Literally. It's turning things on that it never has had on before, and luckily turning off DNA switches (the cancer) as well.  But in the interim, it's messing with me.  Completely. And I am one frustrated pup.

Only two weeks ago I started having a head cold that somehow broke into a staff infection, bacteria infection, and another case of scalp shingles.  Even I didn't want to be around myself.  My counts aren't bad but they aren't normal.  The only reasoning I am given when asking why I've had three separate skin-rash-breakouts within six weeks is, "The Revlimid is changing your immune system." Do I want this? Of course, but do I want to be isolated for weeks at a time - HELL NO.  Cancer sucks, no matter what way you look at it.  But I get really heated when I'm a)not allowed to venture outside my apartment b)not allowed to work out or go to yoga and C) not allowed to eat the things I crave.

For the third time in six weeks -- I'm back at this place. Being bedridden and isolated for six days is my worst nightmare, mostly because I become immobile, and I lose everything I work for everyday to keep my body healthy.  My muscle mass, my balance, my eating habits.  I lost five pounds in the hospital, and now am huffing and puffing just walking around the apartment.  So, I am absolutely livid. The I am Bekah Hear ME ROAR... kind of livid.

Luckily, the infections are healing and the shingles have started going away -- but a part of me is waiting for the other shoe to drop.  Because, it keeps on happening this month... We meet back with O and his team next week to discuss if and how we can prevent ANY of this from happening.  The fact that I've never had shingles in my life, and now I've had it twice within a month is a big frightening.  The fact that my face swelled up like a balloon and I was in so much pain, I literally thought the swelling was going to break my nose is even scarier.

I haven't truly been angry at this disease in a while, and sometimes its not worth the energy -- but in this instance its everything I need to start figuring out how to live with this drug, still get the things I need and use the anger as motivation to put the rest of this stuff in check.  I'll take all of it, and once again for the 35285437954 time use it when I go into physical therapy to gain strength back in my legs and find balance  in my ankles and hopefully return to the gym, and eventually go back to some of those monthly goals.  Each set back is traumatic, especially this one.  I've spent two days crying, now it's time to get back to work.

I hate being angry, but if it's there, I'll use it...


- 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!

Here's to December

Here's to:

• Still kickin' as I reach my sixth year living with Hodgkin's Lymphoma. This December marks six years since my diagnosis. 
• Moving to a new city.
• Recently receiving excellent news that Revlimid is working, and tumors are drastically shrinking. 
• Starting a new chapter with my partner.
• Having a zero-scan/check-up December. 
• Living.

  

Sending love to each and everyone of you,

Here's to another December.

xoxo,

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. 

Can we be grateful and upset? Yes and yes.

If you would like to continue to read this blog once it is set to private in October, please click here and follow directions:

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One of the most difficult pieces of this disease is how everything can be ripped away in an instant.  Health for a twenty-eight year old woman in this body is never taken for granted, and every moment that I feel well I hope to goodness I utilize and soak up as much as possible. Everyday, every moment.

So when a set-back happens after fourteen months of wonderful health (which I never want to seem as though I'm complaining or kevetching because I am so grateful). To put it bluntly, I get pissed. I get upset. I get so frustrated. In most scenarios I look to the silver lining, I can find something beautiful in this amount of pain or look what I achieved in this amount of time... But, I've slowly (it's only taken six years right?) come to the realization that I can be grateful and still be upset.  Being upset or angry does not take away or negate how fortunate I feel.

I am so, so incredibly blessed not only with my support system, my resources, my education, my family, my intake of food and ability to access and afford physical support networks (gym, yoga studio).  I have the most amazing family one could ask for that continue to tell me to slow down, there is no rush, be where you are not where you think you should be. 

But, but, but... when all of this started in June/July I had no idea the amount of time I would be in pain, discomfort, and immobile.  I did not see this one coming -- and I usually do.  I struggle with thoughts of how angry or down am I allowed to get before I seem ungrateful or not appreciative of what I have?  So many other warriors are fighting harder battles, so many are no longer here.  A part of me fights with my inner soul about all of this.  Do I have a right as a six year veteran of cancer (who is living a semi-normal life) to be livid, grieve, and mourn the last three months?  Do I have a right after I worked extremely hard at school looking forward to a full-time job to kevetch that I may only be able to get a part-time job, and that is probably after two more months of recovery?  Do I have that right? And does that take away from understanding that I still appreciate my time here -- no matter the pain or discomfort.

These last three months, I really questioned myself.  Where should I be at twenty-eight? Where should any of us be? Why is that the question though, why are we setting ourselves up for another failure.  When I asked myself where I should be, I really should be focusing on where I am.  Today, I can get up. Today, I can do some yoga. Today, I get to see good friends. Will I get to tomorrow? eventually. But, today is today.

For all the ups and downs that have surfaced this summer I do have to say my friends are some of the outstanding, beautiful, just down right amazing people in the world.  I surround myself with people who lift me higher and along with my family, and my partner, I still say I would not be here without my pockets of friends throughout the east coast.  This weekend I had the pleasure of sitting down with one of them, an amazing young man who has his entire life in front of him and we discussed some of these issues.  Society, social media, Facebook -- the pressures of our culture. What is next? where do we go from here? What age do we need to be getting married and having kids without feeling like a failure?  Goodness the normal pressures of a twenty-something year old are sometimes too much to bare.  A part of me grieves for my own generation as well, at least I have a physical illness that puts some of these things into perspective. (Again, here I need to be grateful, because this is what I do, I am still working on it).

I've realized more and more that people should get to feel how they want to feel. So, why can't I? I feel the same pressures (at times) from our society, but mine is more focused on where I personally thought or think I should be professionally.  It's definitely not the same dynamic as a healthy twenty or thirty something year old, but this voice whispers in my ear from time to time. And this is where I found myself this summer.

Thinking:
- I need a full time job
- I need to get myself physically 100 percent in 2 weeks
- I need to move immediately now that I've completed my degree
- I need to be superwoman. I need to force my feelings and my thoughts in a direction that aren't there yet.

And truth be told, I wasn't. I am still 'working' on being here -- and not where I should be.  I took the time I needed, and still need to be heartbroken.  Here I was, jumping through another hoop, another setback, another few months of being sick and immobile.  And in my world, when I physically can't move, emotionally I feel backed up and immobile as well.  It's a horrible cycle, and eventually I come out of it stronger (like most of us) I bounce... eventually.

But this time, maybe because it took so long for this diagnosis to happen and we all struggled with what was really going on and the horrible unknown -- maybe, just maybe, I needed more time than I was willing to give myself.  Truthfully, I, and the rest of the cancer world never ever gives themselves enough time.  Somehow most of us out there have this mentality that we need to get through this fight right this second, we need to focus and be 'strong.'  That is the cancer culture, and if we aren't... some of us look inwards and see a failure.  An unfortunate attribute to this disease, especially when you don't feel it.

After months of refection and time it always seems to come back around to one major concept.  Be where you are.  Feel how you want. Can I be absolutely, incredibly grateful for the life that I have while others are struggling? Absolutely. It's definitely not the most pleasant feeling in the world, but I know when I am struggling and others are not, I am still very, very pleased and happy for those individuals.  My anger I've realized, or sadness at some times, does not take away from anyone else's pleasure.  And, it does not take away from mine.

I am not one single emotion or dimension, I am dynamic, I have depth, we all do.  So allowing this anger and frustration to surface, be dealt with, reflected upon, and felt I've realized can only help me.  I get to be where I need to be that day, pissed off at the world, or overwhelmed with the beauty of my life.  And I get to struggle and still feel loved, appreciated, and one of the luckiest woman in the world.  I get to feel however I want to feel -- It's just nice that I've started allowing myself to do it.

Here's to being where you are, today.

Sending Love and Light,

B.
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Cancer news: Started Revlimid at 10mgs this week and bumped it up to 20mgs today, no side effects to speak of just yet. I've once again finished off another set of steroids -- so now we wait to see if the fevers return, or the Revlimid will force the disease back enough so I can continue to feel physically well.