'I feel it all. the wings are wide.'

Last Wednesday was an important scan....

The results showed 'stable' disease. Some nodes increased, others stayed the same, and one or two decreased in size. However, there was around a 17-18% increase in total tumor/node volume. Therefore, my oncologist team feels that this treatment is (possibly) keeping my disease at bay -- this may or may not be true. But we won't know for sure. Between last scan and this, there was a bit of a miscommunication, and I won't bore you with the details; however, nothing is larger than a 4cm node, imagine a small grape, those are the sizes of my tumors.  At this point in time, it's really hard to confirm if the drug is doing something, or this is just my normal progression of disease. Whatever it is though, it has kept my horrible symptoms that were occurring from November to March, to a minimum. So there is the positive.

The difficulty however is still the dramatic allergic reaction I have during infusions. My team and family compare it to 'being in a car accident, once every three weeks.' A few days after my infusion, the pain is so severe that I can only move my neck up in bed some nights.  However, the SGN is actually working longer than we had anticipated, so we're all smiling about that. The pain, the side effects, the travel, the fatigue, in the long and short run is worth it when I have...

 my little brother :)

My dtown fam <3

beautiful, beautiful friends from all over...

strength from myself, 

and all of you...

I continue to put one foot in front of the other, and cherish every minute that I have the energy to enjoy the sunshine, my family, friends, food, and next week -- my new apartment.  

With my 5th infusion behind me (last Thursday), infusion number six will be July 8th. And it appears, with every two infusions we will then scan again to keep a careful watch over this treatment.  Therefore, we scan at the end of July. 

I hope each one of you are doing well. I know there are a lot of warriors starting new treatments and still in the trenches here with me. So, if you have time, please visit some inspiring blogs that are close to my heart, and leave some love. 

Here's to my refractory loves: 

•  Anne who is starting a new chemo regimen, to prepare for her allo transplant.
• Hillary who is going to be juggling chemotherapy with lung treatment as well.
• Chris who will be having a scan in early July to hopefully determine his disease continues to be stable or reduced.
• Marsha, who does not have a blog -- but please send her some warm and positive thoughts as she endures a chemo cocktail that are not being so wonderful to her blood counts.
• And lastly, to Kirsten, who just inspires, and blows me away with her positive attitude as she continues her cancer battle as well. Please read her latest entry and poem, it is absolutely beautiful.

Sending love... to each of you,

Bekah

a new start..

This post confirms the official new beginning, it affirms my come-back, it demonstrates that even those who you think after weeks in the hospital might never see the outside world again -- will surprise you.

I may have lost ground, somewhere along the line this year. But, I'm gaining it back in a different way. I tend to do this every year or so, if you aren't familiar with my story. It keeps this interesting. Never dull. Never boring ;) Even though I really wouldn't mind a little boring in my life.

There are still a million and one things on my to-do list before the first of July but a big one I get to cross off. It's all thanks to my Moms, Uncle Jay and Aunt Bobbi, we finally found myself a new apartment in Doylestown, starting July 1st. It's in a perfect location (I can walk to the bus stop, where it picks me up for NYC), I'm practically neighbors with one of my closest and oldest friends here (Hi Mr. Ward!), and starbucks, the dtown bookstore, and my favorite bagel place are walking distance. The parents are about a 5 minute drive for any emergencies, and my pharmacy is across the street. Now how sweet is that for a cancer patient? :)

In addition, my Aunt and Uncle have also opened a trust account for me.  Fortunately, I haven't needed to think about financial issues too too much in the cancer world, but as treatments continue (we never planned on me being sick for this long - who wrote this story anyway?), some of which are not on my plan now -- or free from clinical trials, I am here, like the rest of the world, to graciously ask for any donations. Help for bus rides to NY, help with prescriptions, help with IV fluids at home when needed. Cancer is definitely a full time job, yet, we're the ones paying! and not getting paid.  Anyway, I will slowly learn how to attach paypal to this account, in case any of you would like to make a small donation to the trust.

And lastly, we approach the dreaded scan next week. Which is where I want to share a bit of information about the SGN, because it might be my last post on it.  Originally, the smaller dose as we know did not work. I have a small feeling, due to symptoms, that this large one is not working either. Which will mean a new start of treatment. For those who are or are about to go on SGN, I warn you about the side effects/allergic reactions I had during ALL of my infusions, even with premeds.

Allergic Reactions:

•  Rashes over my entire upper body, and I mean, covered from fingertips to shoulders with red blotches, also throughout my legs, and spots around my hairline and upper face.
• This is not to scare anyone, but unfortunately, during my very first infusion I lacked oxygen and was unable to breathe for a few seconds. The drug labored my breathing to the extent that I could not breath on my own.
• Deep, deep, raw pain in my lower back (where your stem cells develop). This would go on and on, until they tripled my dose of morphine. 
• Fevers during the infusion
• High heart rate
• Low blood pressure

Side Effects: 

• Neuropathy (I know I spelled it wrong, I apologize). Losing feeling of my toes, but within others its been extreme to full feet, fingers, and hands.
• Hair thinning - they tell you this is a rare one, and now I've spoken with plenty of others that agree it is NOT rare. Haven't needed to take out the buzzers yet, but I'm getting close. 
• GI tract, I've hardly consumed any chocolate or coffee since my first infusion. 

So, that is so far what I've experienced. Through cancer B-symptoms, the drug tends to where off one week before I am suppose to go into my next infusion. So, I have an infusion, have a decent two weeks, and then week three -- as it started for me on Wednesday, the fevers and vomiting hits.  I've also had low blood counts, dehydrations, and other issues throughout this treatment but I mainly believe that is due to my cancer and not the actual drug. 

So. This is suppose to be a cheerful update. And, it is! Whether I continue this treatment next week (scan on Wednesday), or am told that I need to start a new treatment due to further progression it will be a new step. A step towards a small form of stability in treatment (that we haven't seen for a long time), or a step towards a new treatment that will hopefully start showing this beast who is boss. Either way, these are steps forwards, and god knows I like to move :) 

Here's to new, delicious, beginnings! 

Sending Love,

B!

Grateful. for. the. fam.

These are my ten younger cousins, my grandparents on my mother's side, and my pup, Lily.  These last few weeks, I can't even tell you how grateful I am for my family -- the Furey's and Rosan's.  They have supported me, emotionally, physically, financially, mentally, moving-wise, and in other areas you can think of. They truly lift me up, when I am down.

So! Decisions have been made. And although, it may not have been 100% what I have wanted to do if I was healthy, this is a good compromise, and I am at peace and happy with my future plans.

I've finally decided to move closer to home, near this beautiful family, and lots of old friends, and leave Boston for the time period.  I have decided to transfer programs to a PA school here, close by, and continue my Masters in Counseling Psych (focus in children/teens), and move into my own place in good old Doylestown. Here, I'll finish my degree in another year or two and then see where the wind blows me. Originally, this was a very hard pill to swallow. My love for Boston will never burn out; however, a lot has changed over the last few months, and I know, this is the right move for the time being.

I have the support of my family around the corner, good, old friends that have been wonderful to me here, and I am much, much, closer to treatment.   Although, I don't want to admit it, its been really nice, being able to lean on others, when needed during these months.  And though I know I could have gone back to Boston and run myself into the ground for the third time :) I think I would rather take things a bit slower, here in Doylestown. Be near family.  Enjoy things.  Pace myself... and get stronger.  And that's much easier to do when you have your family right around the corner.

So game plan for life:  Transfer from Lesley University to Chestnut Hill College, find an apartment (which will happen HOPEFULLY any day now), YOGA, and smile more.

Game plan for cancer: Enjoy these next two weeks. PET/CT Scan on the June 16th. Prepare for the worst (that SGN-35 is still not working, and we hop on to a new treatment), and hope for the best (stable disease, so we can continue this treatment). We'll see which way it goes.

So, here's to game plans :) and being happy that I have some, once again.

'you will find peace within yourself, once you've found all the pieces....'

Sending Love,
B!