Monthly Archives: August 2010

Summer: all things must end

Just a couple of weeks ago, Peter picked this bounteous collection of blackberries in the brambles out back. He then set up shop at the end of the street, selling 4 oz cartons for $2.00 each. He sold out quickly, and our young gentleman farmer added pink lemonade ice to his menu.

Several mornings ago Pete and I traipsed through the brush to gather more berries, but for the most part they’ve already gone by. There is also a definite chill in the air at night, and a few leaves are changing color as well. Ah summer…

Yesterday I enjoyed a solitary  meal of shrimp cocktail, corn on the cob and sun burst tomatoes (Peter called them ‘nomas’ when he was a little guy) out on the deck; I was entertained by the circling hordes of dragon flies.

Seasons and the cycle of life. Everything that lives must die.  Recently I was speaking to two very close friends about some of my concerns for my three children in regard to my own passing. “Don’t even think about it!” one of the friends interjected. But I do, because it is part of my reality. As I explained to my friend, even though I look so healthy and full of life, when I awaken in the morning I hear the wheeze in my lungs. I remain active, but I can’t help but note my slowly increasing shortness of breath. I’ve lost a bit of weight and have become aware of other subtle signs that my immune system is once again struggling with a pernicious invader.

I acknowledge that I am going to die:  advanced lung cancer is not classified as a terminal illness without reason. Although that fact was not initially easy to accept, I am fortunate that I have had some time to work it out. As I said to Jemesii one day (gotta love those adult children, I can be my baddest self in front of them), “thank goodness I’m dying slowly”.

I’ve had the luxury of being able to move through all the stages of grieving: denial, anger, bargaining, depression, and, finally, acceptance.

I’ve also come to understand more about the nature of fear, and that it is inextricably tied to a lack of experience and things unknown. Cancer, or the big ‘C’, is right up there near the top tier of all things fearful. When first diagnosed, I was terrified. But not anymore. Sad, tired, pissed occasionally, and even a little bored.

The same goes for dying. Death has become my familiar. Not a friend or someone (indulge me in a bit of anthropomorphizing) I would invite into my home; but an oddly intimate and somewhat constant presence.

As uncomfortable as it may occasionally make those close to me, I believe it is important to honor my need “to go there”; to actually embrace (however reluctantly) my own mortality.

It is in no way a morbid obsession; I could hardly be more engaged in the act of living. My willingness to look clearly at what what lies ahead has allowed me to really understand the terrain, and so I can better prepare. Hopefully, not just myself, but those I am close to.

After all, death is really just part of life. You can’t have one without the other.

Digging up a bit of the past

Just to the side of our house is is an area perhaps one hundred feet in diameter consisting of piled stones. A few weeks after we’d moved in, I was scrutinizing this spot and found part of an old bottle. On closer inspection, I realized that there were shards of glass and rusted metal scattered amongst all the stones. After a bit more poking around, I could see that this was the remains of an old farm dump (perhaps I’d already died and there really was a heaven, if there was indeed a source of treasure just outside my front door). It was only later that I worried about any potentially negative consequences to having a dump as our immediate neighbor: our water is drawn from a well, but fortunately it is more than 300 feet beneath the surface. Life’s inconvenient little incongruities.

Sadly, at some point, the stones appear to have been rearranged with the aid of a front loader, and seldom do I ever find a complete object. Lots and lots of broken bottles, some of which are quite old. Part of a large brass key, many square nails, a scythe, a broken egg beater (actually, two) and other such discards. From the best I can ascertain, it served as a rubbish pile from perhaps the mid eighteen hundreds until the 1950’s.

A couple of days ago this little fellow’s leg (broken off at the ankle) nudged through the soil. He is bisque and curiously possesses a sizable hump on his back as well as a copious potbelly. At one time he was attached to something by a hole between his legs and he held a rod of sorts as well. I think he is wonderful.

I am also in the midst of planning a trip to Sweden. My father Hilding’s parents, John August and Hedwig Christina Olson, each emigrated from Sweden in the early nineteen hundreds. They passed away well before I was born and so I never knew them. However, I’ve long wanted to visit one of my ancestral ‘homes’.  It is a special trip for another reason. At the time of my diagnosis, my son August was smoking. I very much wanted him to quit, and as an added incentive I told him that I’d take him to Sweden if he did so. Well, quit he did, and called me on my promise. It is time to pay up.

So, come late September, August and I shall fly into Stockholm for ten days. Our very first night we shall join my friend Anja and her family for dinner. That’s the only firm plan thus far; if any of you have inspired suggestions, please don’t hesitate to share them.

Advocacy: making a difference

Today’s post features a guest author; my friend Stephanie Dunn Haney.  We met through the Inspire online support group for lung cancer almost two years ago. She is the mother of two young daughters yet (amazingly) also finds time to be a committed lung cancer advocate. I felt it would be both interesting and inspirational to hear from her:

I am blessed to have found my voice.  I am a lung cancer advocate.  For me, lung cancer had profoundly impacted my life in order for me to understand the true need for my voice to be heard.  I have a family and a full-time job, but lung cancer advocacy sits right up there among my highest priorities.  I simply must make a difference while I am blessed enough to remain here.  And frankly, I think it has had a positive impact on my health!  I was diagnosed with Stage IV lung cancer at age 39, in October, 2007.  At the time, my daughters were two and a half and four and a half.

I immediately began learning all I could about my own case, to drive my own medical care, and about lung cancer in general.  I was appalled by every statistic I read, as I learned it was the deadliest cancer and among the least funded per death. The politics of pink has taken over our country (for a disease with an 89% 5 year survival rate), while lung cancer is stigmatized and ignored.  It is viewed as a self-inflicted disease, which is an awfully cruel way of looking at it—does one really deserve to die because of a, presumably, annoying habit (if so, none of us on this Earth would be still here…)?  But even if you can’t sway someone to have the compassion to understand that over 160,000 annual lives lost is worthy of attention, get this…never-smokers alone would make up the sixth biggest cancer killer, just under the other major cancers and killing more than leukemia, or lymphomas, or ovarian, or liver cancer…just to name a few.  I learned that this disease affects a much more diverse crowd than I once believed…in fact, the fastest growing group of lung cancer diagnoses is in young women.  But one of the biggest lessons I’ve learned about this disease is how little we (the public, the federal government, the researchers, and even me) still know about lung cancer and its true impact .

So I began my crusade.  For a while I thought it was a novel idea and that I was the only one concerned about this problem.  Then I found others.  Others who had experiences and accomplishments I couldn’t begin to fathom who inspired me. The critical mass needed to make a single deafening voice hasn’t been reached, but the people on this journey and the people fighting with us are exceptional, so I know we can get there.

Perhaps no experience has taught me that more than the National Lung Cancer Partnership’s Annual Advocacy Summit.  The National Lung Cancer Partnership (NLCP) is a group that prioritizes advocacy, research (through private grant funding), and patient support.  The Summit has taken place in the spring over the last three years and I’ve attended the last two.  Applications are typically available in January.  Go to www.nationallungcancerpartnership.org, for more information.

Each year NLCP fine tunes the topics, the agenda and the available resources, and man, do they know what they are doing!  They secure top notch speakers on communication, fundraising, community events, and other pertinent topics.  They discuss the science of the disease and up-to-the-minute advances in research.  This year’s big developments were the addition of a returners’ track of sessions and a flash drive to take home with all the documents and presenter handouts and slides (in addition to the notebooks we used on site).

The Summit can be an overwhelming experience; at least it was for me.  Both years, though I was participating in online communities, researching my own potential clinical trial opportunities, fundraising and educating anyone I could get my hands on, I was enveloped in my own personal “tragedy” (though, gratefully I’ve learned to live a new “normal” over the last three years).  But when you walk into a room of about seventy-five people with this intense, shared experience of many survivors, and also loved ones who are fighting for the rest of us in someone’s memory or honor, the reality of our situations come flooding back to us.  I reminded one warm, lovely woman of the daughter she was about to lose (Kara passed away within months of that Summit), and she reminded me of my own mother, who will soon experience the same loss.  Then there are those who have successfully battled the disease, perhaps even to the point of being cured, and those of us who will never conceivably rid our bodies of tumors  We retain the hope of holding them stable as long as possible.  There is so much emotion at all times in the room; it is sometimes inspiring, sometimes devastating.  Yet only powerful, positive things come out of the Advocacy Summit.

NLCP, through its Advocacy Summit, builds advocates from the ground up.  You come away prepared to DO SOMETHING!  (You even work on an action plan prior to your departure!)  You come away with resources, new networks, and new friends and supporters.  And the organization helps you get there.

I have also worked closely with the Lung Cancer Alliance, an exceptional organization that has a number of quality patient support programs and lobbies extensively in Washington for federal dollars.  There are other groups like these two around the country that do amazing educational and fundraising events.  Different advocates with different strengths or priorities will likely be drawn to different groups.

So since my diagnosis, I have done a little bit of everything.  To be an advocate, you don’t have to dedicate all your time, just give what you can.  I have created bulletin boards, had displays at school health fairs, visited Washington, D.C. to speak to legislators, raised over $25,000 with a group of friends here in my community (and more this fall!), I have written essays, commented on online news stories, gotten resolutions passed in my state house and senate each year, and been featured in our newspaper.  And ironically, the one area of advocacy that I just had no interest when we learned about it at the Summit, scientific consumer advocacy (having a voice in research), I’ve learned that I love, having assisted as a consumer reviewer with other advocates with the Department of Defense Lung Cancer Research Program, and having just been invited to participate in as a consumer advocate with the University of Pittsburgh specialized lung cancer program (called a SPORE).  Now, many have done much more than me, or have done much larger scale events with bigger publicity or even helped shape policy…really heavy stuff.  But you don’t need to feel like you have to set fifty different goals for yourself.  Your impact will be great regardless of what your time and interest will allow.

Pick one or two things.  There’s no competition for who raises the most money, or meets with the most politicos, or even staffs the most health fairs.  Speaking for those living with the disease, we appreciate any attention or time you devote to battling lung cancer.  And there are so many types of things you can do to fit your own interests and talents (various forms of writing, patient support programs, awareness programs, fundraising, events, visits to elected officials, etc).  Plenty to go around and we need whatever help you can give.

Consider starting with this…November 6th is NLCP’s Free To Breathe National Walk, which basically involves walking on your own or in your own groups where you are, in solidarity with the rest of us around the U.S.  There may be a larger, programmed Free To Breathe Run/Walk in your area on a different date in the fall, and that would no doubt be an equally impactful and fun-filled event.  Check http://freetobreathe.org for details and dates.  The National Walk, specifically, is a great, low-key way to raise some money and pay tribute to those affected by the disease.  You just register online, fundraise online, and walk wherever and with whomever you want on November 6th.  No group is too small!  And you are always welcome to join “Team Haney” (you don’t even need to physically walk with us in Bloomsburg, Pennsylvania, though we’d love to meet you!), a highly successful and top earning National Walk team two years running.  Or form your own team and give us a run for our money…

So the reality is this in lung cancer advocacy–there are few survivors of lung cancer for any length of time to sustain our own campaign (i.e.  it’s a “high turnover” cancer…).  We simply can’t do it alone.  Family and friends jump in on our behalf, still many don’t…the pain and the need to move dim their passion for advocacy.  I don’t expect my family will carry on my advocacy (though, I have hopes that my daughters might someday speak for me again, and I work hard to teach them every day to use their voice).

If you are a survivor, you need to jump in quickly and MOVE!  Hence, “advocacy in the fast lane”!  Our stories make an incredible impact, personalize the problem and make it more sympathetic to the average, uninformed person.  And our advocacy work brings great fulfillment and a sense of accomplishment, not to mention a whole new circle of friends and supporters (And as I mentioned, I fully believe that because I view my advocacy as part of my life purpose, my passion and drive serve to keep my heart pumpin’!)  And to those who have lost someone to the disease, I would make an empassioned plea to speak up.  We need our voice to be deafening!  Federal dollars are so sorely needed to combat lung cancer, and we receive such a tiny fraction of the funding that other, less deadly cancers receive.  It’s sad when it becomes a competition, and I certainly wish cancer on no one, but the truth is many other cancers are far more legitimized and more supported, and lung cancer is neglected and its progress stagnant, comparatively.

Jump in and help us make this movement snowball!  This is a cause where your help truly makes a difference!

Stability reigns

I am happy to report that my latest scan was stable. Just in case I’m not paying attention, the radiology report noted “Multiple unchanged bilateral and ground glass semisolid nodules since 6/7/10, although significantly increased since 7/09, likely represent a multifocal lung cancer/BAC”  The word significantly, though possibly accurate, seems unduly harsh.  I prefer the final impression, which reads: “Gradually worsening multifocal lung cancer/BAC…”

At any rate, I can stay on the 1066 for at least another two months (it will be two years on trial October 1st). Yippee!

On Tuesday morning, Peter and I drove south for a two day sentimental journey to some of our favorite spots in Ipswich, Massachusetts. Peter spent the first ten of his thirteen years in Ipswich, and although he has a good life in New Hampshire, he misses the coast of Massachusetts dearly.

After picking up one of Pete’s long time friends, Durin, we stopped for lunch at a deli in the village.  Ipswich being yet another small community, we immediately ran into another friend, Elizabeth, and her son Luke.  They joined our small party. After lunch it was time for some chocolatte frappes from Zumis, a wonderful little coffee shop in Ipswich owned by our friend Umesh and his wife.

We joined up with Jemesii, who was able to spend a little window of time with us (that girl is always working).

And then, Crane Beach!  Crane Beach was definitely one of the very best things about living in Ipswich. A mere ten minutes from our house, it was an unbelievable natural resource. Swimming in the summer; but also a lively (if sometimes brutally cold) place to walk and beach comb in every other season as well.

We stayed at the beach until the sun was quite low in the sky, and then we dropped Durin off. Pete was invited to bunk at Durin’s, so Jem and I enjoyed a girls only evening, including dinner out and the night in a hotel.

Jemesii had to head home in the morning. After I picked up Peter at Durin’s, we went to Elizabeth’s. Pete and her son Charlie hung out while Elizabeth and I hit the beach again for a long walk/talk. For lunch, we went to the famous Clam Box for fried clams, onion rings, french fries and cole slaw. So, so bad for you and so very yummy as well. We changed into our swimsuits and returned to the beach for a couple of hours, said goodbye to Elizabeth and Charlie, and made one last stop on the way out of town for key lime pie ice cream and raspberry lime rickies at White Farms, another local institution. Totally satisfied but also completely stuffed, (and mildly horrified by this respite from a healthy diet) Peter and I opted to forgo a plan for dinner. After agreeing that we would do it all again before summer ended, we pointed the car north and got back on the highway.

Back to New Hampshire

 

Breakfast at the Austin Street Cafe

 

Where to start and where to end…my time in Marfa seemed to fly by.  The reunion with Kate, Sally, Melinda and Amy was a major delight.  Once again we fell into that easy cadence of familiarity:  the five of us have been friends for just about forever.  Each time we assemble I am filled with gratitude that we were able, as young girls, to choose the company of such excellent people.

Over the course of the weekend we toured the Chinati foundation and Donald Judd’s personal compound, visited local shops and galleries, ate lots of good food, and drank our fair share of margaritas.  We sampled texas martinis: essentially a margarita shaken up with a jalapeno, as well as migas, corn grits, and pecan waffles.  We laughed and we cried.  Not only did my computer bite the dust, my pin number was refused at the ATM and my password for my email account was denied.  I began to worry that perhaps my computer had been hacked and my identity stolen:   being unable to access anything gave me the odd sensation that I was a ghost.  It was just an illusion however;  turns out my laptop’s hard drive failed (no virus or hacker) and my ATM and email accounts mysteriously granted me access after a few days. Just practice, I guess.

And then all too soon the weekend was over; my friends flew home and the boys came back to Marfa after a weekend of fishing in the gulf.  We ate their catch (from waters unscathed by the BP spill) that evening, and then we got down to work.  Our little house is closing in on a century and spent many years as a rental, so it is a (delightful) work in progress.

 

I wave goodbye from the same perch on which I waved hello

 

Fortunately, in that southerly latitude, the days seem longer.  Yet again, all too quickly, we needed to return home to New Hampshire.  The plan was to drive to Austin, where David had a meeting.  This afforded Pete and I with the opportunity to meet up with my sister Laura and her family at Lake Austin for some barbecue and a little water skiing (Pete, not me). Although it was Peter’s first experience skiing on something other than snow, he got up on his third try and stayed up. Pretty darn exhilarating; even just as a (proud) spectator.

By 6:15 the next morning I was on a flight home as I had a CT scan scheduled the following day. All went smoothly until I got back on the highway north post scan. Lighted signs announced that emergency repairs were being done on the road surface and that three out of four lanes were closed. Sigh. It took more than an hour to travel perhaps two miles. I have mentioned before that patience is not one of my virtues, but I decided to consider this a little exercise in character building.  No need to take it personally (I said to myself) and it could be worse; how about the guy who was now stalled in the far left breakdown lane. At one point a small army of unmarked police cars and vans emblazoned SWAT came roaring down the southbound lane, and once again I was reminded that somebody was in a far more uncomfortable position than I. Fortunately (as I really had to pee), the exercise reached its conclusion at the two mile/one hour mark. I joined Mary and Raleigh for dinner at their house and we toasted my return (they are so much fun) with champagne.

Yesterday was spent picking up the mail and such, as well as stopping off at my favorite thrift stores. I am not only a regular customer, I have friendships with the proprietors, and they begin to worry (really) when they’ve not seen me for awhile. The final stop was at the farmers market in Laconia for some pulled pork sandwiches; David, Pete, Buddy and the hermit crab (one died enroute–it was an amazing five years old)  due home from their long trek in the truck from Texas.

So, I am back to regular routines and once again have access to a computer. On Monday I will go over the results of my scans with Dr. Shaw. Here’s hoping for, if not resolution, stability.