Glorious.

This blog started out as a huge release for my feelings and emotions. Unfortunately the last two years, with so many hits, and strangers coming and reading I've realized how much I've reeled myself back and put some walls up. Which is a shame. I love writing, and even as of recent people swear I should collect some of my old writings from here and the board and put them into some kind of memoir.

At this point though, I've narrowed the readers on this blog down to 200. Still a lot, but nothing like before. I miss writing with passion, and talking about the rawness of this disease and my life. I miss it.  I still write everyday on my own. However I can't tell you how nice it is to help other cancer patients with information, or other chronic illness patients with how to go about this life as gracefully as possible.

I watched a lecture yesterday with my brother on natural happiness and synthesized happiness.  The difference? Natural happiness is something more or so expected in our lives that we would definitely be joyful over, ie, winning the lottery, visiting a long-time friend, a graduation. We expect to be happy, we usually get it, our brain is wired that way.  Flip parts of those thoughts around and you find the synthesized happiness. This is how we perceive our situation, and what we take from it -- it lends you to be happy if you are in control of this part of your brain (which he revealed obviously, many of us are not). He gave a great example of a innocent man who had been convicted for life, the man spent around 50 years in prison until DNA proved him innocent. One of the first statements he released was

'I don't regret a moment of it, it was glorious.' 


There are probably a lot of you staring at that phrase and thinking, is he insane? As soon as this lecturer revealed the picture of this man and his quote, I didn't flinch. I understood. To a certain extent, even under the harshest of circumstances we create our own happiness.  Yes, there are things we will get in life (few and maybe far between) that will REALLY make us happy. But the moments that we are living, are ours to own.

Sometimes, I am in a prison. My body is my prison. For months, I was throwing up every meal, my body ached everywhere, I had blood draws almost everyday, and to say I was weak would be an understatement. Flash forward to today: The last two weeks have been heaven. Those two weeks I did not throw up, spike fevers, need fluids, or take extra medication.  Did I do anything crazy? Did I win any money or meet the man of my dreams? Did I land a great job? Or did my disease get any better? no. But I control my perceptions over things. Most people might think I'm crazy. 'So, all you did was visit friends in CT... have dinner with your Aunt and Uncle... have a few lunches with friends.. and spend time with family?' yeah. that is all I did, and it was wonderful.

I won't lie, January-March was a low, low point for me. I couldn't move. I was vomiting 4-5 times a day, at least 20 pills a day, losing weight, needing two units of fluids, tons of blood draws, I was wasting away. But I can tell you, in between -- there was a dinner with my aunt and uncle, a visit with a friend, much TV watching with my moms, and lots of phone calls from friends that kept me going.  I write this because, I truly believe our lives are all about perspective. We will do things and experience things we absolutely loathe, or that are insanely painful to continue on our path. But in my eyes, at this moment, even if you are literally or figuratively living in a prison, there are moments... somewhere.

I gaurentee fifty years in prison ain't no cup of tea. But I also bet, that man left that gated institution with knowledge, friendships, an abundant amount of mental stamina and strength.

So, it is. in many forms about perspective and this different form of happiness.  Will I still be happy when one of my friends gets married, has a baby, or when I finally graduate? Of course. But I will also soak up happiness when I get to have lunch with a friend, when food stays in my stomach, and when my body doesn't hurt for a few hours in a day.

So remember, you do have your natural happiness. Things that will obviously make you happy. But, your synthesized happiness is something you can actually control, it is a lens you look through that can better your life, your relationships, and your experiences.  For me, I always wonder what it would be like to compare myself to my peers... what would each say on our 50th birthday parties?  Because I know there are a lot of my peers out there who 'expect' to get to age fifty, and definitely will not say the same thing I do, if I get there. Can you guess what it would be...

Maybe something along the lines of, 'it was glorious for me too.'


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Infusion four tomorrow: positive thoughts for no more allergic reactions.

Sending Love,
B

I'll take it!

Although there was a serious emotional hit from the scans, something has changed physically after this last infusion...

What may you ask? I actually feel (gasp) good.

I have much to update everyone on, as I'm starting to formulate a plan again for life :) and the future. The pieces feel like they're starting to fit together, little by little. Even, if the treatment does not work with the increased dose, I am starting to feel emotionally and physically strong enough again to start  another battle, with a different treatment -- if need be.

To note, things that are going well: I haven't needed fluids in two weeks, I have energy, I am eating more and more (maintaining my weight), my counts haven't seemed to take a hit (yet), I am finally done blood draws on Sundays, so this past weekend I was able to visit friends from undergrad in CT, and spend the entire weekend with them, which has been the best medicine of all. And the most smiles and laughter I've had in a long, long time. 

Things are far, far, from perfect. But, for at least a week or two, I've been feeling good. And, I'm going to ride this wave for as long as it allows.  I leave for NY again for infusion number four on the 27th.  We will pow wow with Dr. O, and determine when a CT or X-ray will be since now we've done two infusions with the higher dose (1.8) instead of the lower dose (1.2). Most likely it will be soon.

For now, its been a calm, lovely, and beautiful week/end with friends.  Friends, who I have never, in my life felt more grateful for...

'In everyone's life, at some time, our inner fire goes out. It is then burst into flame by an encounter with another human being. We should all be thankful for those people who rekindle the inner spirit.'

Sending Love,

B

Results

Bad News: My disease has progressed in several areas in addition to new disease. Progression of old disease ranges from .5cm - 1.5 cm.  The largest node is now 5.0 x 5.5cm, above my right hilum. This is the largest my disease has ever been.  I also have new nodes (since transplant) located at the back of my abdomen ranging from 1.0 x 1.2 cm.

Decent news: My therapuetic dose was lower than normal, since the first two cycles were studying the effects of a pharm drug in combination with the SGN-35. That means, they're letting me stay on the trial for a few more cycles to see if the normal dose 1.8 per kgs, instead of the 1.2 per kgs I've been receiving will make a difference.

In other News: I do not have to be back in New York for my weekly visits anymore. Therefore, I won't be here till May 27th, for my 4th infusion. As I had my 3rd infusion (still with allergic reactions) yesterday morning.



'i pray to be like the ocean, with soft currents, maybe waves at times. but, more and more, i want the consistency rather than the highs and the lows.'

B