grat.i.tude (noun)

She interrupted our dinner conversation and patted my arm,  her big blue eyes boring through me with the little golden rings around the pupils.  "Hey mom!  Mom!"

"What is it, Eleanor?"

"Remember that time when you had cancer?  And you got really sick and almost died?  And anyone else who had your type of cancer died?"

"Yes, Eleanor, I do remember that."

"But you didn't?"

"That's right, I didn't."  I raised my arm to give her a fist bump, her favorite salutation.  She simultaneously cocked her arm for a high five.  So I opened my fist and raised my arm to match her high five, just as she lowered her arm into a fist to match my fist bump.  We all started giggling, and I admitted that I'm pretty much the worst high-fiver ever.  I'm so bad at high-fiving that my brother once gave me lessons to improve my high-fives.  Look at the elbow, he said, not the hand.  My high-fives are better since that time, but clearly there is yet room for improvement.

Ian then told a legendary story about pretend high-five classes that I had to attend, and how he would help me practice so that I could pass my high-five exams.  We all put our hands up over our dinner plates and he performed mock high-five drills, high-fiving Eleanor and my hands in rapid succession.  She could barely hold her hands up, she was laughing so hard.

"Now you, try, mom!"  She wanted to see my high-five prowess as I executed my drills.

I raised my right hand ceremoniously over my right shoulder, licked my lips, and proceeded to methodically hit and occasionally miss her hands.  I arranged my face in mock concentration, furrowing my brow as I pretended to aim for her hands but actually aimed to miss just a bit.

"Mom, you only hit my thumb that time!" she chortled.  "You can't even hit the middle of my hand when you high-five!"  She was now celebrating my terrible high-five abilities, too.  How delightful to share this family inside joke with her.  How marvelous to be silly at dinner while Azalea played the piano with her instructor in the other room.  How fortunate to be full, and to take time to digest over giggles.  How exciting to laugh on an ordinary evening.  An extraordinary evening.  So many extraordinary evenings.

Indefinitely

I was recently invited to write a short essay for the magazine Living Well.  What follows is are the first and last paragraphs of that article.  Please click here to read the rest of the article on the magazine's website.  I am grateful to two friends, S. and D., who were my creative editors for the piece.

My hair is always the first part of my body to know that I have cancer. With each diagnosis, I made arrangements for someone to cut it and give it a cute albeit temporary style before the chemotherapy forced it out of its follicles. The first time I was diagnosed with breast cancer, my sisters’ friend gave me a pixie cut in the kitchen. The second time, I gave my young daughters the scissors and told them to have fun. After each cut, the hair follicles ached as they were bent in new ways, springing up with foreign lightness. It is this feeling on my scalp that affirms that I am not dreaming, that the course cannot be altered, that the reality of cancer is upon me. 

I was diagnosed with stage III inflammatory breast cancer (IBC) four days before my thirtieth birthday. I had felt a firmness in my left breast for 18 months, but since I was breastfeeding my second daughter at the time, various medical professionals told me it was a clogged duct. Or something unknown, but certainly not breast cancer. When the lump persisted after I finished breastfeeding, I found a new surgeon who was willing to perform a biopsy. While he was retrieving the biopsy sample and I was still on the procedure table, he told me that the tissue looked good and there was nothing to worry about. 

Until his nurse called me at work the next day. You have cancer. Go to the clinic. You have an appointment with an oncologist. Wait as long as necessary to speak with her.

Thus began my journey with breast cancer six years ago. My daughters were merely 1 and 3 years old. 

At first I had so many questions that I didn’t know where to begin. What does Her2 positive mean? What is the prognosis for IBC? Why had no one detected the IBC? What is going to happen to me? After chemotherapy started, my brain became too cloudy to hold on to new questions that sprung up in between doctor’s visits, so I started jotting my questions down in a notebook and bringing it to my appointments. 

...

Now I am 2 years past my second mastectomy, and I am NED—no evidence of disease. NED is the closest medical declaration for “cured” that will ever be handed to someone with stage 4 breast cancer. Indefinitely, now, is lovely. Indefinitely stretches out before me, three weeks at a time, as the anti-Her2 drips into my bloodstream and prevents new cancer from emerging. Indefinitely includes chaperoning my daughters’ elementary school field trips, gardening with my husband, hiking with my brother, and traveling around the world to give presentations on microbiology. That which used to scare me now empowers me. Indefinitely.

Do you know how long you will live? Neither do I. There are no data to inform my prognosis. The survival rates are poor for Her2 positive cancers, pretty awful for IBCs, and positively abysmal for stage 4 cancers. But one of my anti-Her2 drugs has only been on the market for a few years, so there are no data on long-term survival rates for patients who have been treated with this drug. I am generating the data with each breath. Because of this, no doctor can project how long I will live. That makes me not so different from most people. And we all have so very much living yet to do.

--excerpted from "Don’t Be Afraid To Be Your Own Advocate" by Heather Allen, published in Living Well Magazine in October 2016.  [I did not give my piece that ugly title!  I had much more creative titles that the editor apparently didn't appreciate.]

To read the full article, please visit my article at Living Well Magazine. 

Be well!

Advocacy overload

The same person who presented me with the opportunity to write an essay for Living Well magazine hooked me up with a few more projects near the end of September.  I gave a live interview at the local NBC studio regarding cancer survivorship and patient advocacy, and I recorded a public service announcement for a local radio station for breast cancer awareness month.  It was all quite a lot of fun!  I can't remember ever being in either a TV or radio studio before, and both were different than I expected.  The TV studio was spacious; the radio studio was closet-like.

TV interview on breast cancer awareness

Video interview on breast cancer awareness recorded at the radio studio

I have copies of the radio PSA clips, but I'm not sure how to post them.  I suppose you'll just have to listen to the radio this month and hope you hear it.  :)

Fortune

August was a month of great fortunes.  The PET scan was once again all clear, with a minor exception of a possible blood clot in my neck.  A neck ultrasound revealed that it was nothing, and so I go on living as a NED person -- no evidence of disease.  The great fortune of being NED is sometimes overwhelming, but it's a burden I'll happily bear.

Additionally, I was invited to write a short essay for the magazine called Living Well.  I'm presuming that it's for an October breast cancer awareness issue or something.  They want to publish a small series of essays on the diversity of breast cancer:  one written by a doctor, and two written by patients.  They targeted one patient with early-stage disease and one patient with late-stage disease.  Remarkably, I am the patient with late-stage disease they invited to write a piece.

At first I felt that it was a bit disingenuous for me to write the late-stage disease piece because I am not living with late-stage disease.  I am living with a late-stage disease diagnosis, but not the typical manifestations of late-stage disease.  It turns out that that is what they were looking for:  someone who could put an atypical face on late-stage disease.  The person certainly could be me.

So, I wrote.  The first page of stuff was crap.  I had trouble knowing where to start.  Perhaps I'll turn it into a blog post, lol.  Then it started to get better as I wrote the easy stuff about the timeline of my journey.  Then I thought of a pretty sweet introduction, so I went back and rewrote the beginning.  Then I rambled as I discussed the second cancer, and it was just feeling like a whole lot of cancer treatment (maybe because it was a whole lot of cancer treatment, lol) so I cut some details.  Finally, I thought of a poignant ending and finished it up.  I solicited feedback from two of my writer friends, edited the piece, and sent it off tonight.  Woo hoo!

It was quite fun, really, and didn't take that much time once I let go of the pressure associated with writing a real-live article rather than a blog post.

Another cool thing I did this month was a tiny bit of activism.  I was invited to sit on a panel discussion of safe routes to school in my town.  I was invited because apparently I organized the first Walking School Bus in my town.  This sort of cracked me up because I didn't even know I was doing it.  I just wanted to walk my kids to school every day, and I figured that some neighbors might be interested, too.  So two years ago I started lightly coordinating about 4 neighboring families, and we all walk to school together.  Sometimes if a parent is sick or has an appointment, they just send their kids with the group, myself included.  We used to text each other at 7:30 am or so ("walking today?" or "running late!"), but now there is no question and everyone just shows up at the designated corner at the designated time.  We have anywhere from 1-4 adults with 2-12 kids, and we walk pretty much rain or shine.  In 1986 this would simply be walking to school, and it would be normal.  Today it's a Walking School Bus, and I'll go down in the history books as organizing our town's first.  Lol.

I also went to Montreal for a work conference where I heard about some amazing microbial ecology. I hadn't attended this conference since 2010, and it was scrumptious.  I have over 20 pages of typed notes (nerd salute!) and wish there had been two of me to catch the other great presentations I necessarily missed by being confined to one seminar at a time.  Also, this conference has one of the best conference dinners of all, with a DJ to spin some crazy beats and get the mad scientists dancing.  At 9pm the dance had yet to start, but my buddy A and I decided to change that.  That's right, with our labmates we opened the dance floor and got that party started.  A crowning achievement, to be sure.  

Are you there, blog? It's me, Heather.

At least twice a month I think of something that would make an interesting narrative for a blog post, and then I don't make the time for a blog post.  That ends now.  Thanks for being here when I need you, blog, and for not being offended when I neglect you. 

I've arrived at another PET scan eve, and I find myself more nervous than I have been in awhile.  I feel healthy, alive, happy.  I have no reason to suspect that anything cancerous is happening in my body.  My brain knows these things.  However, something inside of me is whispering to my brain that I may have reached the statute of limitations on clean PET scans, even though my brain knows that that is nonsense and border-line superstitious.  This thing reminds my brain that the interval between my two separate breast cancers was two years, and we've nearly reached the two-year anniversary since my last mastectomy, so the next cancer must be just around the corner.  My brain counters this voice with a resounding, "Nonsense!  Those data are statistically unsound, and also meaningless because you've continued tri-weekly treatments with Herceptin plus a drug (Perjeta) that didn't exist the first time you had cancer.  Any cancer inside of you is continually beaten down, and it will continue to be beaten down indefinitely.  Besides, there's nothing to be afraid of, it's just a little PET scan."  

Just a little PET scan.  

The brain continues.  "Silly girl, the PET scan serves an important role for someone who is living with stage 4 cancer.  The cancer could indeed flare up at any time, and that's why we do the PET scans.  To catch the emerging cancer.  Avoiding PET scans would be irresponsible at best, and negligent at worst.  Stop this fear-mongering, take your PET scan, and chillax."

Oh, brain, what would I do without you?

This conversation with my brain reminds me of another one I had back in June.  My dear friend R was visiting from Massachusetts, and we were having a normal conversation about normal things.  Somewhere in that normal conversation I said, "...when I get cancer again...".  She stopped the conversation in its tracks, and instead we discussed my choice of the word "when".  R prefers the word "if", as in, "if I get cancer again".  I reasoned with her that I used to use the word "if" when I was a cancer-free human, and I even permitted myself to use the word "if" during that time between the cancers.  I have since tried to refrain from using the word "if" when I talk about my future with cancer because it causes my heart to jump into my throat.  You see, the problem with "if" is that it comes with a truckload of uncertainty, and that uncertainty breeds fear.  I hate living with fear.  In contrast, the word "when" takes the uncertainty out of the equation and reduces my fear.  It helps me to accept the entirely probable possibility that I'll have to deal with cancer again in a big way in my life.  Indeed, I continue to deal with cancer every third Friday when I go to the clinic for two hours of cancer-fighting drips.  But this kind of dealing-with-cancer is easy to marginalize because it doesn't interfere with my quality of life.  

I learned from my conversation with my friend R that the problem with the word "when" is that it unnerves some people, including some of those in my support network.  Cancer-free humans probably take comfort in the distance provided by the word "if" because they don't have to visualize cancer or its fall-out.  That's understandable.  But those of us who've had cancer lack the luxury of distance, and we benefit from the power that comes with the word "when".  It's a small power, but important. 

I feel very fortunate to even be having these conversations with myself.  I was diagnosed with stage 3 inflammatory breast cancer almost 6 years ago, the diagnosed with stage 4 ductal carcinoma in situ breast cancer with lung metastases nearly 2.5 years ago, and now here I am with no evidence of disease.  It stuns me to think about it, so I don't think about it very often.  I just breathe deeply and express my gratitude for this day, and the next day, and the next day...