Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Tuesday, February 23, 2010

Decisions, decisions

Life just can't make it easy for me to make decisions, can it?
The stars just can't align, options can't just be or not be available to force me in one direction or the other.
I would gladly take a divine intervention in the form of a dream or apparition saying, "Hillary, you will receive your treatment here for these reasons."
This is partly how I picked my college.
I looked for signs, and the signs pointed to New Rochelle in the form of Cross Cultural Solutions, an international volunteer agency based off of North Ave and a religious publication company that was located on Main St. Both these addresses popped up in my life during the decision making process, with in days of each other.
When I decided to switch majors from communications to nursing the answer came to me in a dream.
When I listen to these instincts everything falls into place eventually.
I have to decide where I would like to undergo my upcoming photopheresis: Dana Farber in Boston or Dartmouth Medical in Lebanon, NH with the primary pros for Dana Farber being that it is highly experienced and specialized in the treatment of GVHD and the pros for Dartmouth being location, location, location.
The negatives for each are clear too: for Boston it is location, location, location and for Dartmouth it's a young program with only 1.5 years experience.
I can't believe at one point in my life I cried in frustration over deciding which hospital to begin my career at straight out of college feeling that the wrong decision would send me down a path of catastrophe.
I even lost sleep over this!
I am now in the process of decided where I should undergo my photopheresis or ECP, but I'm not going to lose sleep anymore.
Life is too short.
I spoke with Dr. Gautier today, my DHMC go-to guru, and Dartmouth does have the capacity to provide this service.
They have a specialist with an impossible to pronounce name with an impossible to remember title that is in charge of the process called Ziggy.
I like Ziggy. I can remember that. One of my very first presents from a very first boyfriend (Michael T. in the fourth grade) was a Ziggy doll expressing his love to me on Valentine's Day.
I, in consistent Hillary-fashion, regifted the doll to my mom.
Oops, okay, I've finally confirmed what you all have been picking on me about and suspected: I regift. I have since the fourth grade, but a doll with the "L" word on it from a boy was too much for me to have at 12.
With this information, along with the information that it may be possible to start on my desired date (the beginning of March, Maybe the 8th, X's birthday) I now have some serious thinking to do.
Yesterday, I was running through all the pros of being treated in Boston.
Now, I can weigh them against the pros of being treated at Dartmouth.
The major plus point for Boston: it's years of experience in world class cancer care and familiarity with GVHD. Dartmouth's photopheresis program is relatively new, 1.5 years.
I need more information from Ziggy before comparing though.
Dr.'s and staff at DHMC are also not as familiar with GVHD; however, Dr. G has been great communicating with my practitioners in Boston so I can be treated here
as safely as possible.
We've all learned from my fall experience, and if I underwent the photopheresis procedure here (the actually weekly 3-4 hour treatments) I would still be seeing Dr. Alyea and Dr. Weinhouse in Boston for check-ups.
One major obstacle in my diagnosis with Bronchiolitis obliterans was its vague presentation. Chest X-rays and scans show infiltrates and possibly hyperinflation that are nonspecific and can easily be misconstrued for pneumonia, cancer, scarring, the list goes on and on.
Really, the key identifying factor is a hallmark squeek, which no one recognized since it's such a rare abnormality.
Now we know I actually have to see my Bean Town practitioners. Tests, scans, and notes just can not be trusted with me, not with Murphy.
We haven't determined a frequency, but I'd be willing to travel to Boston weekly or bi-weekly if need be, especially if this allowed me to continue participating in my families' life the way I want to.
Really, I'm weighing the benefit of experience vs. quality of life.
I am actually feeling kind of lucky I have options. I'm fortunate to have a team locally that will work with me, that is willing to communicate with a Doctor from a different hospital on a problem that is outside their norm.
I'm finally, kind of, sort of, feeling like everything could be okay.
Maybe, I could survive another 5, even ten, healthy years!
But I'm trying not to get ahead of myself.
Thanks for the prayers. Keep them coming. They are working.

1 comment:

Anonymous said...

One of your cartoons reminded me of the advice a friend's mother used to give ... "It isn't how many times you get knocked down that counts ... it's how many times you pick yourself up." And if there is anyone who has made that advice a part of their SOP, it would be you Hill. You are amazing ... truely amazing.

I wish you luck with your decision making process. I always vote for Boston, but recognize the impact of traveling that far, that often. So I'm going to just wish you well in making the decision.

Take care ... be strong ... & know that I think of you often.