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! 

In love, with life.

I miss all of you dearly, and although I do not have time to update about all the new happenings in my life -- which I promise to do very soon (most likely the first two weeks of April, so check back!).

I can tell you that I am completely fulfilled in the following areas of my life:

• Success in school (ALL of my Lesley classes were transferred in! only three more electives to go, plus internship: graduation date set for May'12)
• Beautiful friends (Spring Break with my Dtown Girls and a visit with Chris! Travels to New England to visit with my Boston Loves)
• Health (stable weight at 125 lbs. and counts, smiling everyday)
• A New Love (I am grateful and fortunate to connect with someone who understands me, accepts this disease, and I has easily become one of my best friends)
• Me (I haven't been this happy in years... and am planning lots of travels this summer!)

As of recent, all of my senses are heightened in my life.  Food tastes more rich and sweet, my scent is slowly coming back and I'm able to smell the coffee grinds when I enter starbucks again (my heaven), colors and the sun shines more brilliant, and I listen to music in a completely different way now.. and take all of it in slowly, and savor each note.

Life is truly beautiful these days.  And with that, I will leave you with one of my favorites that I am seeing this weekend...  Ms. Ingrid Michaelson :)

Happy Spring!




Love & Light!
B.

Milestones.

If I could change the world, and pieces of our society... it would be our praise towards one another.  So often in our world we are critiqued, criticized, or told what is incorrect, hurtful, or wrong to one another and especially ourselves.  We are hard on ourselves as individuals, we over analyze our actions, sometimes even belittle ourselves.  Yet, this is recognized as normal in our society.  "I didn't do a good enough job," "I could do better," "I failed... I failed... I failed." It is natural for most people in our society to focus on the negative, or what we are/were unable to achieve instead what we DID achieve; however, when we praise each other for the good, sweet, beautiful things in each others lives, or even recognize it in ourselves... if we congratulate each other on small moments, or say "I love you," for no reason at all.  We are held in question.

This is the part of the world I wish I could change. If we say something along the lines of "I know I'm amazing!" "I know I'm strong," we are seen as cocky or full of ourselves, when in reality? It is just an acknowledgment that we are pretty wonderful -- because we are. Believe it or not. We totally are.  You included.

So one of the few things that I love, and hope to continue to do however fast, sick, or insane my life maybe is to recognize not only myself but those around me.  The people I surround myself with, truly lift me higher.  And with this being one of the most devastating years I have lived, it has also been my most resilient -- in the light of adversity, my family (which includes my close friends) rallied. They rallied so hard that instead of discussing funeral arrangements during the holidays this year, I am reminiscing about my moments hiking through the mountains of Athens, in Greece.

They rallied. for me. They rallied when I pushed them away, when I was impossible... when in my darkest moments there was no light to be seen. They rallied when treatment after treatment this year, I lost pound after pound, plummeting down to a bit under ninety pounds. They rallied when I lost people I loved, and I expressed that I thought I was next. They rallied when I told some, explicitly, that I no longer wanted them in my life (yet, they stood stoic, over and over again, until my light returned, and I returned to them). They rallied, and stood tall through my tears, my defeats, the loss of Boston, the loss of school, the loss of another past life. They rallied. And if you are reading this -- you did as well, because the support I gain from all of you, each one of you, is another reason why I am here.

I am here, because the people in my life are amazing. I am here because I gain strength from all of their lights.  In turn, one of the most beautiful things that occur in my life as well... is that I get to pay this forward. I receive e-mail after e-mail from others in the cancer community, or individuals facing illness who read this blog and in turn know that if I went through hell -- they can too.

It's important for us to recognize the good, the beautiful, when we triumph, the positives no matter how small or insignificant they may be. So, now as most of us reflect on 2010.  Here are my milestones that I wish to share with you.

Milestones

• Transferred/Accepted into another grad program in Philly. Not only completed classes, but received a 4.0, and a great love for individuals in my group therapy class. 

• First remission in three years. 

• Holy weight gain. 90lbs to 120lbs today :) The comparison is frightening.  And honestly, these pictures are a little hard to look at -- but, they make the point to other people who are facing illness, that you CAN come back. I promise you, if I looked like this only a few months ago...

Six months ago: 

 

opposed to, today:

 

 

• If you know me well enough, I have been talking about traveling to Greece since my sophomore year of college after taking an Art History class and learning about greek culture/history -- I can finally cross that off my bucket list, and now am even more in love with traveling then I was before. The travel bug has bit me, and I have no intention of holding back with Ireland, Scotland, Australia on the list -- and a revisit to Greece, with additional trips to Israel and Turkey. Don't ask me how financially I will do this -- but it will be done.   

•  Last year, I could hardly walk to the bathroom, let alone even think of hiking a mountain. Last week, traveling through Greece my friends and I had the incredible opportunity to sight-see, visit the islands, but also walk (a ton since the entire metro system in Greece was on strike). The trip kicked my butt, but in an amazing, amazing way.  From Mt. Yeserdes, to Delphi to the Acropolis, to Falapalos Hill -- these are the moments I hold close to my heart knowing, that my body is not only back, but able to walk 10+ miles a day, and LOVE it.

• Although this is pretty personal, I feel the need to share this with other young women facing cancer treatment -- Aunt Flow, after three years, decided to make a come back as well. Who knows what this will entail for future fertility or hormones, but god damn, it is good to feel like a woman again.  

• Zero, I repeat. I am on zero medications. From being on fluids last year for months at a time, hospitalization after hospitalization, discussion of what I would like at my funeral, taking twenty plus pills a day. Tubes coming out of my chest at all hours of the day. To now look back, and enjoy my morning cup of coffee and a vitamin a day instead of the trials of several medications from cancer treatments, side effects, insomnia, depression, neuropathy and the list goes on... I am grateful, and thankful to have a point of detox and not be on any medication at all.

• Nearing the end of course work. Between many treatments, two different grad programs, lots of classes/internships. Next semester I am putting away my final load of courses, then starting in May (2011) I will begin my LAST full time internship (that will extend to the following May 2012). Soon, this 60 credit degree with licensure will actually be a reality, after chipping away at it for three years. 

These are the pieces of me that are intact, and I am so grateful for all of them, however short or long-lived they may be. And as we venture into 2011, I invite you to be proud of your own accomplishments and milestones from this year. Attempt to look at yourself with a positive lens, and instead of focusing on the goals or relationships you were unable to fulfill -- focus on the ones that you've accomplished.


In addition, this will be one of the last public posts of this blog. If you wish to continue reading my progress, or researching different treatments on here, or just wish to follow for no reason at all (because that is okay too!), Please click here, and follow the directions. After February you will be unable to publicly view this blog, as it will be set to private. 

Wishing all of you a wonderful, reflective, new year.
Sending Love,
B

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

No news, is excellent news.

After a Thursday-Friday treatment last week, I was able to recover and jump back into life on Monday afternoon. I've never recovered this fast from a chemotherapy before. Things are good. 

My weigh-in was also a celebration in itself. Last month's weigh in was 100.5 lbs. September's weigh-in was 105.7 lbs.  Five pounds in one month? Amazing. In addition, my SED/ESR levels dropped from 130 (in July) to 15 last week.  For the first time in a really long time, it's nice to be boring. I'm eating it up.

Due to some amazing family and friends in the next three months I will be hopping in cars, planes, and trains to....

California
good old Hartford, CT
Dirty Jerz!
and Athens, Greece.

Scan on November 10th, Dr. O is hoping for a small remission, which would mean a month or two off of treatments. He might just be right this time...

xoxo
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!