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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Thursday, June 25, 2009

Cancer Girl’s Guide To Life

I am back off on big adventures today (as if they ever stopped).
My friend Brynn, Jacob, Xander, Bailey (their 120 lb. golden retriever, and I are off to Alabama for a week.
Road trip start time is 7pm from my house, perfect timing for me to coach one last soccer practice from 5:30-6:30 before our journey starts.
Really, my adventures haven’t stopped, I just haven’t been able to keep you al apprised of all of them.
On Sunday, Jon, Lexi, Xander and I joined one crazy frog catching competition in VT. We couldn’t have had a better day for it, and among the prizes the kids caught were bull frogs, pollywogs, tadpoles, and salamanders.
Xander, just for the day and just during his catching time, was renamed “Xander Salamander.”
Lexi even shed some of her girl ways and trekked into the murky pond for better catching.
I was impressed.
We joined a great group.
Since then, I have been working on life au naturale.
It is harvesting time for some of the best fruits and vegetables in the northeast.
Xander and I went strawberry picking at Peachblow Farms in Charlestown, where we go every year, and showed up just as their asparagus was being picked.
I didn’t get around to growing asparagus this year.
I also didn’t get around to growing it last year or the three years before that, but I am one serious asparagus eater.
Thank goodness I am surrounded by country farm woman who know how to harvest and preserve (because I am lost). The woman in charge said asparagus can be frozen.
I bought 10 lbs and rolled and froze them all ready.
Ten pounds will hardly get me through the winter, but filling my pint sized freezer full over asparagus is not going to go over with my chicken nugget and ice cream loving men.
I have been wanting to invest in a new freezer.
I was thinking that the general savings of getting the fresh, local food I would freeze at harvest time would compensate for the cost.
That was until I discovered that an energy star model costs, minimum $650.
Hhhhmmmmm. . . . .I am still mulling it over.
My current freezer is getting fuller.
I tried my hand at jamming and canning yesterday.
I have to say, I impressed myself.
I also have to say, it’s not as hard and tedious a process as I remember from being a child.
Drying fruits, now that requires time and patience.
I made strawberry rhubarb jam, and it smells good.
I left a little out to try.
Thankfully, Aunt B stopped by just as I was finishing to provide some helpful tips regarding the finishing process.
Who knew she was so handy in so many ways?
I also had to make a couple emergency calls to my mother, as in “So how, exactly do you seal these things? What is paraffin wax? And how do I ‘boil can jam?’”
But I think I have it down.
It certainly went better than my dandelion maple jam debaucle when I decided to create an entire new recipe (have you ever heard of maple dandelion jam?) because I couldn’t find a decent recipe for dandelion blossom.
My jam did not gel. I changed my goal after I saw the results to “dandelion/maple syrup.”
I’m pretending I meant it as an all natural, local sweetener for teas and coffee, like the agave nectar I use as a sugar substitute.
However, I don’t know how to can that properly, and none of the cookbooks or the internet are going to tell me how to on a recipe I just made up (I was getting a little ahead of myself).
I’ll be learning to can with the wax today, probably this morning, because it gets hot in the kitchen with all that boiling.
I’ll be making strawberry jam (no rhubarb, which came from a local farm too), and freezing some of the goods, before I finish packing up for our big adventure to Alabama.
I saw my professionals at Dartmouth yesterday and had a great appointment.
My labs continue to look great.
Dr. Meehan is pleased. He continues to do research on post-transplant outcomes at Dartmouth.
I’m intrigued.
I love research. I have to admit, research is probably my first great love, ever since I tried to make a telescope and microscope out of toilet and wrapping paper tubes at 6 or 7 years old.
I would do pretend epidemiological (finding the cause) research since I was 12 years old.
What makes this fascination even creepier and more ironic, is my specific areas of fascination were virally induced possibly fatal diseases.
Under this realm included the obvious, HIV/AIDs (remember, I am part of the first generation who has not known a world without this disease. The first death I heard of from AIDs-related illness was a girl my age (12 or 13 years old) who had been raped and contracted the disease. Think about growing up in THIS world), and wait for it, drumroll, blood cancers or diseases with severe bone marrow dysfunction.
Feel free to play the theme song to twilight zone in your head on this one.
Suffice to say, I do feel I am sufficiently prepared as far as intellect to battle my lymphoma.
I, actually, think I sometimes know too much.
Ignorance is bliss, people. Learn from my experience.
My life goal, my dream work, is exactly what I am doing now.
I am doing research like my life depends on it. I am writing my findings and spreading the knowledge of my disease process.
I did think I would at somepoint get a blood cancer.
I was an obsessive cancerphobe since I contracted mono in the sixth grade.
I added up all the possible causes.
I had mono. I lived underneath power lines, which in about 1993 or 1994 was linked to childhood leukemia in NV.
I was screwed.
I’m not screwed. I am exactly where I am meant to be.
I may not find the “cure” to cancer, but I am going to do the best I can to make fighting cancer a whole lot easier.

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