Something suspicious had shown up during a routine mammogram.
Except this time thats not what happened.
First Tami found out that she did havebreast cancer.
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It was metastatic, otherwise known as stage IV.
There would be no mastectomy because surgery would do no good.
There is no cure for metastaticbreast cancer.
Tami and me at a breast cancer awareness event
There is only buying time.
You read those numbers right.
Statistically speaking, my friend is living on borrowed time.
We in her expansive internet of friends hold our collective breath, praying that no suspicious zones light up.
Then we all go on with our livesuntil next time.
Most days Tami and I dont talk about her disease directly.
She is one of the most positive people I know.
So I finally sat my friend down to really talk.
Tami and me at a breast cancer awareness event
Dont wait to start self-exams.
Be your own advocate.
If Id followed the age-45 guideline, I wouldnt be alive today, Tami once said to me.
At the time I had no family history, but insurance did cover the test.
No punch in of breast cancer is no big deal.
The perception is, Oh, you have breast cancer, youll be fine, Tami says.
People think it’s possible for you to just have a double mastectomy and be cured.
She did, when doctors initially thought she was stage II.
Imagine wishing for a double mastectomy and being told its too late.
Picture an airplane falling from the sky every single day.
And each time, 115 people die.
Imagine the hysteria and outrage we would all feel.
Yet thats how many people die each day from metastatic breast cancer.
I found this analogy so powerful when Tami first shared it with me.
Better yet, donate directly to metastatic breast cancer research.
METAvivor is currently the only U.S. organization dedicated solely to awarding annual peer-reviewed stage IV breast cancer research grants.
(It all goes to METAvivor).
There are so many people just waiting for that next drug to come out.
Will there be another drug by the time this one doesnt work?
Ultimately, MBC patients know that they will need to resort to clinical trials.
There are amazing resources out there now to help patients navigate clinical trials, Tami says.
One of the best websites available was designed by a metastatic patient for metastatic patients.
Calledthe Storm Riders internet, it pulls trials from all over the world into an extremely user-friendly interface.
I wake up every day worrying about whether Ill be here to watch my children grow up.
Nobody should have to pay $2,543 a month for their chemotherapy copay.
Yet thats exactly what Tami was doing at one point, after her husband switched jobs and insurance plans.
The nonsensical reason: Currently, I.V.
People are working to fix the system, and you might help.
People are always asking what they can do and how they can help, Tami says.
One billtheCancer Drug Parity Act(S.2039)says that whether your chemo comes in I.V.
or pill form, insurance should cover it the same way.
We are fighting for research that could save our lives or the lives of our children.
Patientscanhave a say in what research gets funded.
It feels very hopeful.
Find out how to get involvedhere.
It can be very lonely having a disease like this.
I wake up every day worrying about whether Ill be here to watch my children grow up.
Even though its my diagnosis, it affects everyone in my life.
What helps is when people dont stop checking in.
The today is so important, because each day is so different, she says.
There are tricks for staying positive, and they really work.
Just being alive is enough!
Use your voice, speak up.
One person can make a difference.
Taking a different path than you expected can have unexpected upsides.
That said, its very hard emotionally because there is so much loss within this particular community.
The choice I make is to channel my grief into making a difference for future generations.
It just makes me fight even harder for a cure.
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