The Unwritten Code

There is an unwritten code between refractory folk of Hodgkin's Lymphoma. The few that live the lives that we do, are constantly in and out of treatment. Some of us have incredibly great, wonderful, and high months, while others, are bedridden, jumping from trial to trial as fast as possible to stop the cancer side effects and figure out which path is the best approach. And then, slowly, ever so slowly, our roles change.... those who were in high places, might dip into small depressions or too much fatigue, those who could not see a light at the end of the tunnel, are now more fully functioning. 

The refractory folk, the cool kids club, that I and many of my friends belong to -- would never wish our worst enemies to experience this life.  Because the constant unpredictability, unsettling, unbalance, and the big unknowns that occur to us and our peers are daunting. And although we realize and know we should be thankful that we have a 'chronic' cancer... this is still, hard. Especially when you are in the middle of a treatment burnout (treatments that run longer than a year), or are hitting dead ends when there isn't a new treatment out and you've relapsed, or need a new treatment as soon as possible. 

We attempt to continue our semi-normal lives, but instead of scheduling times to see movies with friends or luxary vacations. We schedule trains and planes to the best cancer facilities in the world, with the hope that they have a new, responsive, chemo, that would like to eat our cancer cells and get rid of them for a decent amount of time.  We really never know what is going to happen once we've signed up for the trial, they say there will be some side effects (but others always show their faces later down the line). And just as the doctors hand us over to our nurses for blood work, we hand our bodies, our souls, over to the oncologists who think, they might have an answer for us. 

We lose weight. We lose hair. We lose our sanity. We lose our drive. We lose our motivation. Sometimes, we even lose our fire to keep going. But the nice thing about our group is -- when some of us are up, and doing well, we can pull those other warriors who are in the trenches with their families, pull them up, and wrap them in an abundance of support. 

I've witnessed this. As it was only a few short months ago -- I did not think I could humanely particpate in any more treatment, I thought I was done. And somehow, with all the support, and the knowledge and the unwritten cool kids club code -- I saw others reach in, pick me up. Pull me towards them, and let me cry on their shoulder.  Unfortunately, and fortunately, some of the tides have turned.  Because of these brave warrior men and woman, I am standing before you, registered for four master level classes next semester, and hoping for a great scan next week. 

But that is not what the point of this post is about, it is to look at those... who need a bit more support, to look at the individuals who pushed ME, who did not give up on ME, who continued to tell me, I have more fight left... and return these amazing favors.  That is what we refractory folk do, when one is down, the others will pull them up -- as much as we can.  They would do the same (if not more) for us, for me. 

These positive thoughts and love go out to:

• Alison and Adrienne. Adrienne's Unveiling was last weekend, and I can't even imagine how painful the experience was for all of Adrienne's friends and family, and the woman (Alison) who put all of this together.  Alison is one of the strongest mother's (and woman for that matter) I know, please send her caring thoughts in the next couple months...

• Mike has experienced Hodgkin's Disease for almost 10 years now.  The last few years, he and his Mom, Sharon, have been in and out and in and out of various treatments, with Mike's low blood counts he's been unable to find a stable study that do not destroy his plateletes.  Sharon & the fam, recently decided to move Mike into Hospice care, as he is in pain and at times unaware of his surroundings. You can leave Mike and Sharron a comment on our Hodgkin's board if you wish: Click here. 

• Kirsten, who I find to be the most hilarious women I've ever encountered, is having a bit of pain trouble and lots of fatigue, she's gone straight from the Bendamustine to another chemo, and the treatment burn-out is definitely NOT fun. If you'd like to send K some encouragement, please write to her by clicking here.

• Lastly, but certainly not least, Anne is having her allo-transplant done within the next two weeks full of chemo and then she will receive her sisters stem cells.  This is a huge, huge moment for Anne, as we truly hope that the cancer is gone for GOOD after this being her second transplant.  Recovery will be difficult, but please send her some love.

There are many others having difficulty right now too, but if you have any positive thoughts, prayer, or warm thoughts, I know they would love it, if you sent them their way.... If you have something that you would like to directly send to them, through email (and can't figure out how to do it yourself). Please leave it in my comment section with who you would like to dedicate some words or thoughts to, and I will be sure to send them to any of these individuals.

Although there are many days, weeks, and months that I wish I did not have this cancer.  I am incredibly grateful and humbled to be a part of this group. They are the most empathetic, sensitive, deep, introspective, and caring group of individuals I have ever experienced. 

We're rooting for ALL of you, 

Sending love to each and every one,

xoxo 

B