Be the Match #2: THE CURE FOR CANCER!

How can you avoid clicking on a link claiming it will talk about a cure for cancer? Sure, if you've googled cancer and trolled the internet for information before, you might be worried that I'm going to proselytize about the value of witch-doctor remedies.

"Drink a carton of cannabis oil a day and your cancer will be cured!!"

"What the pharmaceutical companies don't want you to know: As long as you never come into contact with any sort of plastic, you will never get cancer."

"A woman in Portugal ate 17 gallons of juice a day and her stage four cancer was cured"


But regardless, as human beings we will go on hoping that someone will discover a mythical cure for cancer tomorrow. Heck coming from my nutty high school, I can even hope that I'll *know* the genius who finds a way to end this disease.

If building a low frequency radio dipole telescope
could somehow cure cancer, I'd contribute my findings
from senior tech lab!

The fantastic thing about a number of blood disorders (including cancer, MDS, sickle cell) etc etc is that there already IS a cure!  That's right. Let's get out the trumpets and ticker tape and start forming a band!!



Unfortunately that cure is in the form of a bone marrow transplant- meaning it is limited to people who have a perfect match from a sibling. Anyone who is a single child, adopted (yup! That's my mom), or comes from a genetically diverse background that is underrepresented on the registry (particularly Asian, Latino, or African America) is up a creek without a paddle.

I'm lucky to have a brother whose genetic similarity to me is
confirmed by the fact that NEITHER of us can ever open our eyes
wide enough to take a decent picture.

Even worse, patients without a match on the registry KNOW that the paddle they need is out there somewhere. A match exists, it's just a matter of finding that person and asking them for an enormous favor.


What does this mean?

It means that if you add your name to the national bone marrow registry, you could cure someone's cancer!  Your high school biology teacher was *so* wrong about you! You're going places. All of those scientists in research labs can't even come close to the difference you can make by volunteering a few hours of your time.

It means that if you donate to Be the Match at the link below, you can help perfect this cure. You make sure that there are more people registered so a patient can pick a 10 for 10 match. You are giving the gift of stable housing during the most stressful period of someone's life so they can focus on their health. Even giving 5 or 10 dollars is an act of generosity that I promise will make you feel good all day.

http://www.bethematchfoundation.org/site/TR/WalkRun/BetheOneRun?px=2327005&pg=personal&fr_id=2010

Be the Match Facts #1: Show Me the Money!

I'm starting out my posts on my Be the Match fundraising efforts with the basics. 

Where does the money go?

•$25 covers a clinic co-pay for a patient. Clinic co-pays can add up to $300 a month.

•$50 covers two days of meals for a patient and their caregiver during outpatient recovery. 

•$100 covers the cost to add one potential marrow donor to the Be The Match Registry.

•$500 provides two weeks of temporary housing during recovery. If patients live more than an hour away from the transplant center they are required to relocate and live nearby for the three to six months of recovery. Many families spend $800 to $1,500 a month on temporary housing, while also covering a mortgage back home. 

Why is this money important? 

The long and short of it is: cancer is a costly, costly disease to treat. I've read blogs where patients have been deciding which procedures they can afford to skip or which weeks they can risk getting infections so they can go to work and earn money.

Be the Match is such an important organization because it removes financial considerations as much as possible.

Neither the donors nor the recipients should have to worry that considering health is going to ruin their futures.

SO  if you've heard enough and can afford to contribute anything then please click HERE!! (It's a link I promise) and donate to my campaign

I'm a Details Person. Can you give me more info?

Just to put things in perspective, my family is extremely fortunate given the stability of my father's job and the federal health insurance he provides.

However, cancer treatment has still be an enormous drain on our resources. I think it would be for any family regardless of how much financial planning they had done or how many resources they had.

I thought it would help give people perspective by explaining what cancer treatment actually looks like even in a situation that is close to ideal. Family members flew in from all over the country to cook us meals and to care for my mother in the hospital. We also had relatively little financial stress because of our insurance. Still, the toll and commitment was enormous. 

I'm a Survivor?

Hello everyone!  What does one do with a cancer blog when a patient no longer has cancer?

Actually, this is an appropriate questions since anyone who has had close contact with cancer struggles with the journey afterwards.  

First of all, undergoing tests every few months (as well as withstanding additional chemo in my mother's case) is terrifying enough, but the fact that five years  + of uncertainty lie in the future makes you want to order up a test every week. 

Even the distant future feels delicate. No life plans will ever be certain, but cancer throws a wrench in everything for years. I have a nightmare in which I take a year-long fellowship in China and then have to come straight home.

Apparently, our strategy for survivorship involves Settlers of Catan

I felt myself dealing with questions of "survivorship" almost immediately after I found out that my mother was not going to be getting a bone marrow transplant. We went from a position of taking immediate action to a position of no longer having to do anything within an hour. Talk about whiplash (of the best variety!)

Even as I write months later, questions about cancer follow me like a shadow.

What does it mean to be cured? When do you feel safe? When are you no longer a patient? Will "cancer" feel like a personal and intimate issue for the next year? How about the next five to ten?

Well, I have decided that cancer has changed my life in a profound way. It's not going back to the way it was... and that's not necessarily a bad thing. 

I have made a few resolutions about what I'm going to do with that new perspective.

1) Now that I have been this close to cancer treatment, I want to always make myself available for anyone experiencing it themselves.

Mostly I've been reflecting on the experience of trying to "live openly" with the fact that I was thinking about cancer treatment on a daily basis. Thinking back on it, it almost sounds like I had to come out of the closet... but I'm going to stick to that analogy.


It made people. That. awkward.



Upon consideration, I think this hesitancy comes from the status of THE BIG C itself. Cancer conversations happen quietly and almost covertly.

I understand that the people who I have these conversations with can be paralyzed with questions:
Is it okay if I ask how your mom is doing? Should I comment on the length of her hair? Is she tired walking up those stairs?

On my end:
Should I say my mom "has cancer" or "had cancer"? (She chooses the former and I choose the latter) Should I say she "had cancer" or "she was sick"? Should I tell this story given the fact that it involves a visit to my mom's hospital room?

If you would like to hear another account of this our societal reactions to cancer, please read  Once, Twice, Three Times Malady: My Love Affair With Cancer and Why I Decided to Tell the World

It finally reaffirmed what I had been feeling

I hope that just by talking about cancer and making a resolution to listen to other people who want to do the same will make a difference.

2) I really want to make a contribution to the Be the Match Bone Marrow Registry.

5 minutes and 4 cheek swabs can save a life

My family felt the pain of not finding a match through the registry. It left us with some pretty scary options.

However researching bone marrow donation also gave me the gift of hearing stories that (to risk sounding cheesy) really restored my faith in humanity. Thousands and thousands of strangers have volunteered to save the lives of children, parents, siblings, and significant others, sometimes without any assurance that they would ever know what would come of it.  I've been so impressed by the organization itself and motivated to participate in what I believe is a valuable cause.

SO I will be running 5 k (3.1 miles) in the San Jose Be the Match run.

Please consider contributing to my fundraising efforts

I promise you will be hearing a TON from me on this subject.