Just call me, Lucky.

At this point in time, I'm comfortable enough to say, that in the worst of the worst of situations. I am the luckiest girl in the world. The last two months I have been overwhelmed with an amazing program at Lesley. Although Education, always felt like 'my calling,' I never seemed to connect with my peers very well in the Master's level. Being, one of the oldest woman in the program.

Now, as I am one of the babies, I am incredibly humbled and feel such gratitude towards my peers and incredibly introspective professors. My classes, the challenges, the papers, and the discussion is rich, thought-provoking, and raw. Real issues, ethical questions, my mind finally feels challenged in a way, I didn't realize was possible. Although I have a zero psych background, this path makes me feel at home. In some ways, I knew I'd get to this here (maybe twenty years from now), but I'm glad I'm somehow, I got here faster then expected. And am so overwhelmed with the community developed within each classroom. To say that I'm happy, would be an understatement. And, when friends call me a nerd or a work-a-holic for focusing my attention this last month on my studies and internship interviews -- I'm okay with it. This is not a program, of just books here. This is program for and of people. This is a program, in which we are all making a difference, and I'm grateful to be part of it.

Aside from that, my midterm papers are pretty much over. Which, lets me breathe a bit more. Still lots of work, but I have had the beautiful opportunity to spend and be spending time with my gorgeous friends. For the first time in three years, I went and celebrated my birthday with an amazing gift from my uncle and aunt, who invited me to their beach house in Florida with three of my a-mazing girlfriends from Doylestown. I have never, ever, been more relaxed in my life. It was heaven.




Aside from our four-day-vacation. Midterms. And up-coming interviews for my internship for next year. I have been spending a decent amount in the hospital this week. Which is okay. But, thought it would be important to lend some advice to those who are on the clinical trial track. Although, in the beginning the LBH589 was very stricked, and I didn't have a lot of flexibility my doctors and I have been attempting to 'bend the rules' a bit. For instance, I was suppose to have a CT scan about two weeks ago. But, with the pressures of coursework last week and this week. I asked to propose to the drug company if we could push it off a bit. In response, they accepted this request. Sometimes -- like a wise woman once said (Alison ;))... All you have to do is ask.

We are also, experimenting. At the moment I was on 15mgs of LBH, feeling a bit nervous for this upcoming scan since the last scan did not reveal any reduction (yes, I probably should have told you all, but stable is still good, at this point in time). I asked since my plateletes were going up, and doing well, if we could up my dose a bit. I know what you're thinking -- who asks for MORE chemotherapy? Well, me :) If I get thrown off this trial, most likely, I will be entering a tougher chemo regimen, so, if my body can handle a higher dose in chemotherapy, on this trial. I will take it.

Thus, on Friday, we began on 20mgs. The catch? The drug company needs blood tests from me every week. So instead of spending one full day at Dana Farber every other week -- it looks like I'll be there a bit more until my body proves it can handle the 20, or not. I'm okay with this for now. As, a scan is coming up soon. I guess I just want to push my body as far as I can, in hopes that two extra weeks of a higher dose will reduce some of these tumors -- who knows right? As far as side effects, I'm trying to suck it up. But my body can already feel the difference as my fatigue has reared its ugly head again, and the nasea has returned. But, sometimes, risks like this are worth it. You give a little, you take a little. You have to strike that balance.

So, time will tell. Other then that. Things are wonderful -- which is the reason for the lack of updates. I am attempting to not think about cancer, unless I absolutely have to. Which has taken time to get used to, but every day, I am learning more, and coping with this to the best of my ability. If not for myself, in hopes that other young adults with a chronic cancer can see -- it can be done. And you can still live and accomplish your goals.

And, on a side note -- who can seriously think of cancer. When you have these gorgeous locks? Have I mentioned I LOVE having hair again? Hope all of you are doing well, and enjoying the sunshine in your life, as much as I am.

Love, love, love,
B

The ice holds hard, but for the promise..

My fellow friend, and beautiful Israeli mom of two, Sivan , is an incredibly talented photographer. Recently, she shot these flowers, letting me know she felt they represented thoughts of me. These kind of smiles don't happen too often - thank you Sivan (and dear Bri).

• Dear Gertrude, Now I know what you mean...

Now that I am somewhat settled, in my own bed. And we are pretty much certain that I will not be readmitted (again) back to the hospital.  I wanted to share with you the experience of ICE.  Since I've been on this cancer journey there have been numerous amounts of Hodgkins survivors, I've met various ones my age, but there have been little to none of Hodgkins, recurrent, early 20's,female survivors.  Therefore, a part of me feels that it is vital to keep a record of my treatment path in hopes it will help someone else in the near future if they must endure the transplant as a female patient. 

• The ice holds hard, but for the promise...

ICE represents three different drugs: Ifosfamide, Carboplatin, Etoposide. The game plan is to receive these drugs over a 36-48 hour period. 

Day one of salvage chemotherapy, nurses pumped me with fluids and several anti-nausea medications.  Lots of individuals ask which ones to take when going into treatment. Unfortunately, lots of doctors say the same thing 'it all depends on the individual.' My favorite cocktail through the entire process was, an hour before chemo intake zofran and benadryl, then a half hour before chemo receive .5 mgs of ativan.  It prepared me to be nice and sleepy for the treatment, and prevented that wonderful vomitting that my body just loves so much. Wednesday night after fluids and drugs were taken care of, the Etoposide was infused. 

Thursday morning, Day two of chemotherapy, I was prepared the same way for my next infusion.  Day two I was 'suppose' to be infused for a straight 24 hours. From 9 am on Thursday to 9 am on Friday.  The drugs of choice were Ifosfamaide and Carboplatin, both drugs cause infertility and damage to bladder, and other various not-so-fun side effects that I will spare you the details of.  A very rare occurence is toxicity (too much drug infusion within the body) which causes confusion or hallucination.  

Twelve hours into my 24 hour infusion, I was told later, I was unaware exactly where I was, and was not acting like 'Bekah..' I'd like a definition of that please? What is it, to act like Bekah ;) Anyway. For fear of toxicity, we stopped the drugs, mid-infusion, until Dr. Nasta reported to us, Friday morning.  With her authority it was decided that my 'where-abouts' were not 100% because of the chemo drug, but infact the pain medication I had been on from my port surgery (which happened Wed morning), and the combination of drugs and chemo. She assured us, it was not toxicity. And we proceeded on with the 12 hour infusion into Friday...

Therefore, Friday, Day Three of Chemo was a combination of left-over chemo that was suppose to be complete throughout Thursday morning, and more Etoposide. Which finished up the first round of ICE.  To most outsiders, I get the sense you think - chemotherapy itself is painful, but it is usually the opposite. 

During these infusions, I am somewhat peaceful, reading, listening to music, watching DVD's.  The drugs do not automatically attack your body, Therefore, it is usually two or three days after the entire set of ICE sets in that the pain begins. In addition, Twenty four hours after my last dose of chemo, I need to give myself a small nuluesta shot. This shot produces white blood cells in the bone marrow. Bone marrow growth, in MY body, causes massive pain.  

• Hope is a thing, with feathers that perches in the soul..

The pain, nausea, dehydration, combined basically sent me back into the hospital on Sunday. Luckily, my doctors have a new plan of attack for my second round starting on the 20th. Which I will explain.. at a later time.  For now, It is one solid week after chemotherapy.  With Day one being - the first day of chemo (January 30th), today (February 8th)is considered Day 10.  My counts, have most likely hit an ultimate low, since my blood levels were around 2.9 during discharge. This equates to fatigue and a little to-no immune system to fight back infection. These next days I will be most vulnerable; therefore, will not expose myself to a lot of people. Days 17-21 (Feb 14th - 20th) are the days I will hopefully have enough good counts to see some of my favorite people.  

Things I love about completing round one of ICE:

• sleeping in my own bed
• not vomitting 
• being hydrated
• sleeping through a whole night without a nurse checking vitals
• chocolate milkshakes
• knowing, I can do this. 

all my love...to all of you.

- B

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Today I miss: being able to eat apples

Today I am grateful for: winter hats, keepin' my baldness, oh so warm.

Today I smile for: seeing good friends on the 15th