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!