A Sweet remission!

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

a COMPLETE remission!

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

Here is our time line as of now:

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

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

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

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

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

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

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



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

Love,
B!

Tears and Scans

I am in sweet
sweet --
 beautiful,

Remission.

(complete remission)

for the first time in 

three years. 

B.

Me and  Max are happy campers! Go celebrate!

I live for them.

This will be a lovely, long update, so please pull up your favorite comfy chair and some peach tea, and settle in...

Although treatment last week was a bit rougher than past treatments, numbers and weight were absolutely excellent.  After last month's weigh in at 105.7 lbs, I pumped myself up to 110.8 lbs last week. Another five pound increase was an incredible milestone, I have now officially gained 20 lbs in the last six months after my many hospitalizations last year, it finally appears I am hovering over my normal weight (115lbs), and after the next month and Thanksgiving coming up I'm hoping to find myself around 120lbs as I head off to Greece with the loves of my life in December... A PET/CT scan is set for November 11th, and treatment will continue that afternoon into November 12th. This will be round five of the bendamustine (I will only receive six cycles in total).  My ESR/SED rates/values have been below 15 for the last two months -- this in itself is a triumph.  We obviously hope that it continues to stay at a normal rate, especially once treatment ends in December.

My energy has also been at an all time high, with hitting the road almost every weekend to visit friends and family in different states.  Midterms are complete in my classes, and it's pretty smooth sailing for the rest of the semester until Finals set in again. Although I am incredibly grateful for being able to take classes this semester, its amazing to me how I crave more challenge, more discussion, more richness from this program.  There are many nights I head home after class, missing, desperately my Lesley Education in Boston and the connections I've made... however, I'm thankful for this second chance at my Master's and know once I'm back in the field interning this coming year, another piece of my puzzle will be filled.

Aside from having a wonderful oncology team, supportive family (who I get to see SO MUCH more often now that I am living in PA, that makes me smile). I am also ridiculously thankful for every person who has donated to the 'Rebekah Fund.' No one realizes how expensive New York becomes during treatments, since we have to buy food there (and are trying to plump me up), as well as garages to store our cars, gas, and other expenses. Honestly, without all of the donations (especially from my Uncle Jay's work -- designed by JANE in a Bekah Bouquet).  I'm not sure how we would have swung it this month.  I thank those who have donated five dollars, I thank those who have donated more, you have no idea how fortunate I feel... to have all of you, and your kindness connected to me in some way. I truly, truly appreciate it.

With all of these amazing pieces of my life, the stability of treatment, and finally being able to spend quality time on campus, and with my beautiful family and friends -- most would attempt to ignore the other underlying meanings of this month.  But, what I've learned most from this disease is, that even though I may have some short-lived happiness, there are others, still struggling... there are others I love and adore that these weeks and months should not be ignored.

I find it's easy to turn a blind eye, when things are going so well for you personally.  But, without some of the people who have touched my life in the past, I would be nothing and no where I am now, without them.

October is a ridiculously difficult month in my heart. Two years ago, I lost my dear friend Scott, who I still think of every day to this ugly disease, and a year ago... many of us lost Adrienne. Though the leaves and foliage are bright and vibrant, and smiles, pumpkins, and coffee's are shared, there are few moments in which I don't think of these two during these weeks.  My heart continues to break for both families, and as Adrienne's Unveiling is this weekend,  I can't help but wish all of this -- for Scott, for Alison, for Adrienne, and for those of us who are still fighting, that this... is all a bad dream.

Now that I've entered into a new program, I am asked difficult questions (since I don't have a full head of hair yet), you can tell I've been or am going through treatment.  An older women in one of my classes continues to ask me how I do this, how I keep going, knowing that there will never be an end to treatment, why would I want to live this life?

With a deep sigh, I wish I could describe the privilege I feel that I am still here, that there should actually be others, many of us (Sarah, Eric, Jessica, Pat, Shannon, Jake), that should still be here as well.  That although I have had a whirlwind of good news, and beautiful people who surround me, I still feel it. I feel the difficulty of this disease, the rawness and vulnerability of tireless treatments, the damage and brokenness that one can feel.

Why would I want to live this life?  Because with as much pain that I allow myself to feel from others and my own disease, I have a chance (for some reason or another) to still be here.  Living.  However and in whatever way I can. And I keep going because I know they would for me. I know Scott, I know Adrienne, I know Sarah, I know they would all feel the pain, as much as I do, and have it motivate them.    For the last four years, I have woken up many mornings with the knowledge that this cancer will grow in me for many years, and I have to be okay with it... I attempt to suck as much marrow out of my life as humanely possible, and I know that when I really really live out my days, I live it for them.  I live it for those who can no longer be here.

So, I ask you, while you hug the ones you love this October, live for the ones that are no longer with us.

'She who has a why to live, can bear with almost any how...' -- Nietzche

Please send love and support to Alison, Adrienne's mother.
Wrap her in your strength and warm thoughts please.

- B

l'arte d'arrangiarsi...

So much has changed and transformed within a month, that I, myself, can't even believe it.  I will update more, when I catch my breath from my weekend getaways, and school but for now here is a quick recap of the last month:

• I was accepted into school, as a transfer student and started classes last week. I am loving being back!
• Finally found a yoga studio that fits my personality, and my body is thanking me everyday. 
• The Bendamustine-chemotherapy has been extended to only once a month. I am in heaven. I haven't gone this long without seeing medical personal since summer of '09. 
• There haven't been any night sweats, fevers, or any other symptoms since my first dose of this chemo. How amazing is that?
• I finally set up a PayPal account to the 'Rebekah Fund' which is over on the side bar. I despise asking for money, but if you would like to help me and my family in ANY way, we'd be so ridiculously grateful for your donation to my medical travel and accomodations. 
• I was able to visit New England two weekends ago, and catch up with amazing friends.  Had the energy to drive up on a Friday night, come back sunday, and then go on to do a full week of classes -- I haven't felt this amazing in a year. 
• I have definitely gained weight, and can't wait to see what my weigh-in will be, come September 16th, when I have my next treatment. I'm hoping to at least hit 105 lbs, since my 100.5 lb weigh-in, in August.  
• Three of my dearest friends, my brother, and I are planning a trip to Greece over my winter vacation to celebrate, ME, surviving four years with cancer. I wonder what we'll do for my fifth anniversary? :) 
• After losing my hair to the SGN-35, my baby hairs are finally sprouting! 
• I am back to being Bekah, for the time-being. It's so nice to finally see myself again...
• I am sucking the marrow out of life, and am grateful for every single second of it. 

Sending love to each and every one of you,

xoxo

B!

Eager Beavers -- this is for you!

I've been meaning to post pictures, but between the move, treatment, and life, I've again lost my 'transfer' to do such. So, you will all have to be patient. However, the apartment is definitely almost up to 'Bekah' quality. But! You did not sign in today, to look for that.

For my eager beavers, who have been texting, calling, and emailing.
Here is the run down from last week:

• Met with Dr. O, we did NOT do a scan, we stopped SGN-35, the pain was TOO much for all of us, and there was no quality of life left. In addition, there wasn't any reduction. Which equated to, another end of another trial. This was the 6th treatment I've been on in the last three and a half years. I feel old.

• We switched to Bendamustine, a drug that has been used in Europe since the 60's and is FDA approved here for CLL and specific Lymphoma's (just not Hodgkin's yet). It has had great (fast, but short) responses. Therefore, if it works, it might give me some room to breathe without a lot of disease, but most likely the disease will come back fast. The catch: I am only allowed six cycles of this drug, and then no more... Another Hodger Kirsten is on this right now, you should cheer her on and see that she's been having a decent quality of life on it too. 

• As soon as we switched the drugs. My night sweats, fevers, pain, and other symptoms. STOPPED. (Yay! this is incredible news) This probably means something is happening to the cancer (so keep your fingers crossed).

• Main side effect of Bendamustine: low blood counts. To yield my counts bottoming out, we inject a shot called Neulesta into my lovely body. The day after my drug infusions. This makes my stem cells/blood counts go UP! but causes my pain in my back and my bone pain in my body to be earth shattering to the core.  Although I hate pain medications, to deter the pain, I utilize narcotics for most of the weekend that I've had my treatment. This means, I usually don't respond to people -- or if I do, you tend to get a pretty humorous response ;)

So, it's Monday evening, at the moment... and, I'm just about drifting out of my chemo-brain, narcotic-fog. I  would say that this is how my schedule is going to be for those who keep track :)

• Treatments will be on Thursdays and Fridays (next treatment August 19th and 20th)
• Neulesta Shot will be on Saturdays (August 21st)
• Pain, chemo-fog, unable to communicate well will occur between Saturdays and Tuesdays (August 21st-24th). 
• And we hope for good days... until the next round (September 9th and 10th).  

I'll be checking in again, to update you on other things BESIDES cancer. As I am slowly starting to plan my fall schedule, I have some incredibly exciting news about this coming winter, my new roomie! (my pup lilly), my amazing family (yet again!) and sharing silly tears over the fact that this last 'check in' with Dr. O was my two year anniversary working with him. 

Your cheers, posts, emails, and energy keep me going -- and this has been, and still is a small rough patch transitioning into a new treatment SO sudden. I thank you, I thank you, I thank you, from myself to my family, to all of you, for what you've given me everyday and what you provide me in the future.

Pictures to come soon, promise!

- B