Tuesday, January 10, 2017

Legacy

My siblings and I would spend the whole summer at the rural library, subsisting on air conditioning and literature.  We would ride our bikes up to main street, park our bikes in the rack, and read book after book in the underused, over-firm stuffed chairs.  When we tired of the Babysitter's Club, we'd turn to the nonfiction section and let loose our imaginations.  The book about the Presidents was one of my favorites.  When opened on the table it was the size of a newspaper, with full-page images of painted portraits of each President, and short descriptions of their presidential terms.  I loved to reconcile the portrait with the term, imagining how Tyler's chin-length up-do contributed to his legacy or lack thereof.  Or how the weight of the Civil War seemed to be captured in the portrait of Lincoln.  I puzzled over the presidents who were nearly or actually assassinated, uncomprehending of the passions that could lead to such extreme violence.

Tonight I listened to President Obama's farewell address, and I couldn't help but think about this book of presidential portraits.  What will his portrait look like in the book?  What will the overview say to my grandchildren?  I imagine him smiling on the last page, his legacy not yet defined, having led with an idealism unmatched by any previous president.  If only Michelle could be painted at his side to complete the portrait of his leadership and grace.

In November I was in DC for work and spent an evening with two dear colleagues on the National Mall.  It was a cool, clear night with a full moon, merely a week after the election.  I had felt confused by the election, both by its outcome and by what it would mean for the future of all citizens and would-be citizens.  I also worried about what it would mean for my job, my healthcare, and my childrens' education.  The Mall, however, lifted me up.  I felt grounded by the monuments that Americans have made to commemorate the truly great people and accomplishments in our history.  We have suffered many low points, as any great nation does, but in the end we celebrate the high points.  We will continue to have high points to celebrate.

Me, on the approach to the Washington monument

The moon and the monument

Me, reaching for the top although I cannot see it.  Always reach for the top although you cannot see it.


The monument reflecting on itself as I reflect on it, by the light of the moon
After our fill of the Washington monument, we made our way through the World War II memorial.  With intention I walked around the pond, placing each foot on the stones around the perimeter.  So much fighting to free the oppressed and to protect democracy.  And a turning point for women, who were essential for the war effort.  
Inscription on the WWII memorial
 Then we walked the steps up to the Lincoln memorial.  The hall was solemn despite the 50-odd tourists who occupied the space.  People arranged photos in hushed voices, not wanting to disturb the meditations of others.  Lincoln, who for all his imperfections held this country together and laid the foundations for freedoms that we are still working to perfect.
What is he trying to say?
 It was getting late, and we had walked a great distance, but I felt that I needed to visit Martin Luther King Jr.  One of my colleagues had never seen his memorial, and it felt wrong to skip it on what by now felt like a pilgrimage to renew our faith in our country.  Dr. King's memorial is my favorite because I find it incredible that his statue is displaced from the mountain of rock behind him despite a chunk of the mountain remaining attached to his back.  The symbolism is overwhelming.  This was my first time beholding it at night.  I hope to always behold it at night.
What would he say now?
The next morning was absolute perfection, and I had discovered that the Iwo Jima memorial was just across the street from my hotel.  An impulse I couldn't ignore beckoned me to the statue that morning, so I skipped breakfast, checked out, and dragged my roller suitcase to the memorial with only 17 minutes before my shuttle was to arrive.  I regret not waking up an hour early so that I could sit with it for awhile.  Perhaps I am biased because my husband was a U.S. Marine, but I was awed by the statue.  It is bigger than I imagined, bigger than it looks in pictures.  It's as tall as my 2-story house, plus the flag.  And the faces of the men at that scale.  Their faces.  My eyes mist over thinking about it.

For their country, even though they might not ever see it again.  
All of these monuments to commemorate freedom from monarchy, freedom from oppression, freedom from slavery, freedom from authoritarianism.  Do we remember our history enough to avoid repeating it?  The monument makers urge us to remember.

In summary, which I say only to trick you into thinking I actually have some way to summarize my thoughts, tonight the President said that, "...presuming a reservoir of goodness in other people is a risk..."  I am ready to go forward and take that risk.

I suppose that this post is ill-placed on a cancer blog, but I guess I had something to say.

Tuesday, November 29, 2016

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.

Tuesday, October 18, 2016

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!

Friday, October 7, 2016

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.  :)

Tuesday, August 30, 2016

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.  

Thursday, August 4, 2016

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...    

Thursday, December 17, 2015

The weight of gratitude

It's just a random Thursday in December.  It's not an anniversary of anything joyous or tragic.  Perhaps it's the joy that my kids brought to our activities this evening, or the successes at work today, or the excellent playlist I put together on Spotify, or the family I'm missing, but my heart is really full.  And I felt like writing about it.

After work I took my student out for a beer to celebrate the submission of his first manuscript.  It's a big accomplishment in a graduate student's career, and I wanted to mark it with a social outing.  We were joined by our collaborators after we had all bashed some code in a 2-hour bioinformatics sesh.  Everyone was feeling accomplished and merry.

Before the beers arrived, my colleague, S., started a conversation with me by saying, so, how's everything going?  This is always a loaded question for me because I never know if the person is asking about normal things or cancer things.  People often want to know about cancer things but don't know how to ask about them directly, so I have to infer from the way they ask if they're inquiring about my holiday shopping achievements or my PET scan results.  You can imagine the difference:  "How are things going?" in a light, skippy tone, vs. "How are things going?" with emphasis and gravity.  I don't see S. very often, so it was hard to distinguish what type of "how's it going" she meant.  I opted for a response of, "Really great, thanks!  I have treatment tomorrow, but last year it fell on the day after Christmas so tomorrow's a pretty good deal...".  I felt ridiculous and wished I had gone the route of discussing what Santa is bringing my kids.  Fortunately she's great and saved my lousy conversationalist self by diverting the conversation elsewhere.  I suppose the positive spin on this is that my cancer is a normal part of my upbeat existence, but I do feel badly for all of the innocent friends, family, and colleagues who fall under my cancer-accepting bus during normal conversations.  Please know that it's something I'm working on.

This brought to mind the news that I had yet another clean PET scan in November, on the Monday after Thanksgiving.  I've lost track now--is that three or four clean ones in a row?  Perhaps five?  It's a small mountain of clean PET scans.  You should know that I do not take any of them for granted, although the result of each one is a bit surreal.  In my mind I have stage 4 breast cancer, but the scans seem to be taunting, "no you don't".  Then my treatments say, "yes, you do".  Then the scans say, "no, you don't."  This argument can go on for the next decade as far as I'm concerned.  Whatevs.

Speaking of 10 years, my Medical Oncologist was on the radio a week or so ago because her research study made the popular press.  She was the principal investigator on an analysis of data from women who had stage 4 breast cancer between 1988-2011.  The part that I keep hearing on the news is that of these stage 4 patients, the 10-year survival rate for those who had surgery to remove their primary cancer was almost 10%.  The survival rate of those who did not have surgery was only 2.9%.  This news got me all excited because I of course chose to have surgery, so I have the potential to fall in with the 10%-ers.  My decision to have surgery was a big deal because none of the medical professionals could advise me on whether or not to keep or remove the breast.  All four surgical oncologists at the fancy hospital discussed my case at Tumor Board said that my case was a medical gray area, and so the decision was mine.  It was clear to me and my gut feelings that the breast had to go, and these new data seem to validate my decision.  10%!  That's a fantastic number.  As I have sometimes complained about when it comes to experiencing a rare side effect, I've rarely fallen in with the majority in my activities, so this is one time I'll be elated to be a part of the minority.  #bethe10%    

All of these thoughts were in my mind tonight as I was running the sewing machine on Calvin's Christmas present in between dance breaks with my daughters.  Azalea was choreographing an elaborate duet in the kitchen, sketching diagrams on the whiteboard for Eleanor and I to follow.  I sewed while she drew the next position, then she'd call me in to run through the dance with Eleanor.  Eleanor was my sewing buddy, pushing the pedal on the sewing machine at my instruction.  We finished both the gift and the dance, leaving all of us feeling full of creativity and productivity in equal measure.

They are such treasures, my daughters.  I am so grateful to be here to dance and sew with them.
      
Then Bruno Mars starting crooning over the bluetooth speaker, "You can count on me like 1, 2, 3, and I'll be there..."  I started thinking about all of the people who have been "there" for me.  I started to worry that I haven't been "there" for all of my loved ones in this year of recovery.  Have I been too selfish?  Have I spent enough time tending to the needs of others?  I don't think so.  So many people are in my heart to reach out to.  Hopefully I can improve the balance as I continue to survive.  
  
In the meantime, I have a few more nights with the sewing machine in my future as the Christmas holiday approaches, and hopefully the dance parties will continue in tandem. My heart is filled with gratitude for this life.