Thursday, July 31, 2008

Hello from "Coordinating with Medical Facilities Central." Given my good response to the current treatment, surgery may now be an option. The bottom line is, I have been advised that surgery is the best option if I am a candidate. There is some question about how the loss of a lung will affect my quality of life, but if I have no life, who gives a s--t about quality.

Not knowing what would be available, last weekend I put out the call for assistance in getting an evaluation for surgery at Memorial Sloan Kettering (MSK) in New York and MD Anderson (MDA) in Houston. This week I also accepted an offer to try and schedule an evaluation at Emory. Much to my amazement, with the help of my remarkable friends and family, every institution has accepted me. I am currently scheduled to go to Emory on Tuesday 8/5 and MDA the following Tuesday. That is subject to change, as the MDA evaluation takes 7 to 10 days. I am working on condensing the MDA evaluation and/or switching the Emory and MDA appointments. In the meantime, Liz and I are furiously working on collecting medical records (a daunting task), I am still waiting for a consensus from my team of doctors here, and the surgeon at MSK is available on Wednesdays in August, so that has not been ruled out. Whew. Thank goodness for Liz and Neil, Doc Dave, Lee, Richard, and Regina.

I am sad to acknowledge there have been two other recent cancer diagnoses of women my age who live in Atlanta. One has lung cancer. My heart goes out to those stricken and their families, and ask that all my blog readers say an extra prayer for their recovery.

What can I do to thank all of my supporters who have helped get me to this point? You have nourished my body, my family, my spirit, and taken care of me in ways unimaginable a few shorts months ago. My goal is a full and complete recovery. There is no possible way that this could happen without each and every one of you.

Love to all

Sunday, July 27, 2008

Happy birthday Amy A! Hope your 50's keep you bright and shiny and bring less drama than mine.

It was a pleasant weekend with Ben, my family, and a few friends. This week brings more Aussenbergs to town (Liz and David) and perhaps some new decisions about my treatment. The prospect of shaking things up in the medical arena revs my engines.

Apparently, there are opportunities for excitement, even in this so-called life.

Thursday, July 24, 2008

Good News

You would have thought that I won the lottery today. Everyone in Dr. Wiggers' office was all smiles, hugging me, congratulating me. The results of a CT scan performed in Wiggers' office yesterday are unequivocal. The tumor has been busted. Instead of a huge mass, it is dramatically reduced, surrounded by bits and pieces of what it once was. A shadow of its former self, literally. Dr. Wiggers could hardly contain her excitement, and brought me in to the lab to look at the comparison between the pre-treatment and yesterday's scans. I got a hug from Dubovsky, and Dr. Scheinberg weighed in with his congrats. Couldn't have come at a better time. That, plus the comments about statistics. Each comment helped, but I have to hand it to Steve B. for boosting my confidence on this one.

Chemo was a little uneven today. It was postponed until later in the afternoon to check out an unpleasant feeling in my chest. It temporarily drizzled on my parade, but I checked out fine, and I was able to take my poisons. Loooong day. Thanks, Michelle. You were a real trooper.

If the steroid high continues, I may feel like a walk tomorrow. Anyone up for the Greenway?

Wednesday, July 23, 2008

Difficult Day

Today was a more difficult day than I have experienced in awhile. While perusing the National Lung Cancer Partnership website I was confronted with raw statistics, which I have seen before, yet have studiously avoided. But, in fact, these statistics are not pretty. Unfortunately, sometimes a good attitude can falter in the face of certain realities. Also as a result of the NLCP website, I had a poignant reconnection with an old friend. He had followed his heart to California about 10 years ago. Not long after, his girlfriend was diagnosed with lung cancer, virtually the same diagnosis as mine. An athletic, vegetarian non-smoker, she did not win her battle. Her struggle touched him deeply and he became an advocate for all things that kill lung cancer. That is how he came to be on the board of the NLCP.

This roller coaster ride is at a low point. I will go back to basics. Regroup. Put one foot in front of the other. Tomorrow is chemo #5 of 7, and radiation #20 of 34. Maybe I will add some prayer to those bags of medicine.

Sunday, July 20, 2008


The weekend brought many delightful moments. I highly recommend Serenbe as a peaceful and beautiful retreat. I have already made plans to spend a weekend there in September with John to celebrate our birthdays and anniversary. It has a laid back charm that will be perfect for a relaxing getaway.

The workshop that I attended was energizing. The vision of the Atlanta Collaborative Divorce Alliance was renewed and refined, with a concrete plan that will see us through the next year, and beyond. I am more committed than ever to working together with my financial and mental health colleagues to help couples who are divorcing to make good decisions for themselves and their families. Speaking of colleagues, I hope it won't be long until I will not only be actively working with them again, but fully participating in all their extracurricular activities. Amy, you make a mean martini. Saying goodbye to Lauren Alexander was bittersweet, as we wish her well in her new endeavor. Happy trails. You know you can come "home" anytime.

Within minutes of returning from the retreat, John and Brent pulled up. I have not quite gotten all the hugs I need from my son, but I'm getting there. He's taller, tanner, and chock full of great experiences to share. Thank you Falling Creek Camp, for giving him just what he needed.

I am pleased to report that this weekend was more about what I could do, than what I couldn't. The bucket is not half empty. It is half full, and getting fuller.

Thursday, July 17, 2008

Learning More

I met with Dr. Dubovsky before my chemo treatment today. Based on our discussion, I don't think that I fully understood my treatment protocol. Turns out that my 7 weeks of chemo is not the full course. My understanding now is that the 2 courses of chemo that I will likely receive after the 7 weeks is to complete what would have been 4 rounds total of chemotherapy, which seems to be a very common treatment protocol. My weekly doses are apparently fairly weak compared to the punch that comes with chemo received every 21 days. It's the effect of nagging at that tumor every single week that Dubovsky was looking for. He reports that my vitals and numbers (blood counts) are good, and the lungs are functioning to his satisfaction. I'm glad for the enlightenment, the other good news, and I committed as ever to beating this thing.

Tonight, fabulous steroid high notwithstanding, I am looking forward to the weekend retreat with the Atlanta Collaborative Divorce Alliance, and the return of my son on Sunday. Next week also brings my nephew, Ben, to town. I have nothing but good things to look forward to. I am also buoyed by the wonderful comments on the blog. Silver linings can be so sweet, and I do not regret for a moment that I have reached out for this one.

Virtual hugs to all.

Tuesday, July 15, 2008

Today I had an appointment with Dr. Scheinberg. I have not seen him since he visited me after the biopsy in June. There was not a whole lot to discuss, as he has not been receiving the notes from Drs. Dubovsky and Wiggers. I am sure he will rectify that sooner rather than later. I initiated this appointment with him, but he is clearly committed to remaining my "quarterback" through the treatment process. We also talked about Team Dream and his many, many research, awareness-raising, and fund raising projects for lung cancer. He was thrilled to hear of TD2009's contribution. He is putting me in touch with lung cancer survivors who are also involved in fund-raising activities, and I expect to be on his awareness-raising bandwagon as soon as I am up to it.

A thought on blogging. I can't imagine going through this process without this blog. For one thing, I think it would be too lonely. I can only entertain so many visitors, as the most conspicuous side effect of my condition and treatment is fatigue. I simply don't have much energy, even for phone calls. But this blog serves several purposes, one of which is keeping me connected with people I am not able to see, or even talk with right now. Lately, however, it is feeling a little like a one way street. I enjoy the writing, and many people have told me that they enjoy reading the blog. I wouldn't mind if you let me know by posting a comment. It does not have to be literary, witty, deep or scholarly. And if you can't figure out how to post your comment, find a teenager to help. Even 10 year olds are adept in this area.

My world is very small right now. I only intend to live this way for as long as I absolutely have to. But while I am here, please help keep me connected to the one out there that I so deeply love.

Sunday, July 13, 2008

The Weekend


The weekend has been quiet with the exception of some welcome visitors. My pattern of bad Saturdays and better Sundays was broken. Did anyone mention a pattern? Did I say there was a pattern here? Whatever. Saturday was easier than today.

Good news on the hair front. I'm still waiting for the hair drop. In fact, I had a leg wax today because I couldn't wait any longer. Another week and I'll need a hair cut and color. I have gotten great advice from survivors about hair loss, but I'm just not ready to "get over it."

Bad news on the weight front. I never, ever, thought I'd see the day that a 1-1/2 pound weight loss would cause distress, but it is. I hadn't expected it since I felt I was eating well all week. I guess that the cooks out there can use whole milk or cream instead of low fat. It seems so counter intuitive. And bring on the Haagen Dazs Pomegranate Chip.

Team Dream had quite a kickoff week. Now it's my turn to put all you riders and contributors in my prayers.

Last, and never least, Brent has one more week of camp. The letters and pictures show a very happy guy. That's him on the bottom left.


Love to all.

Friday, July 11, 2008

Rewrite

I couldn't stand it. I had to rewrite my posting for July 9. The premise was too good not to make it a complete thought.

Plus, I couldn't sleep. Now I'm off to try again.

Thursday, July 10, 2008

Good Medicine

The skies cleared, and armed with my new handicapped parking permit, John and I headed to Encore Park for the Steve Winwood/Tom Petty concert. It was as good as I had hoped. I stood through most of Petty's set, and never felt overly fatigued. I am not sure that I could have handled this on any other night besides a Wednesday, as it's the farthest day from the chemo treatment. So the timing gods were definitely on my side.

John and I are both long time Winwood fans. He played several Traffic songs, which are my favorite, and he played a couple of songs with Petty. Tom Petty is amazing. He looks funny, he talks funny, but he creates music that rocks my world, and I am clearly not alone in that sentiment. And he doesn't even break a sweat. His only hard work is finding songs that the audience doesn't know every word to. In fact, he went back to his Mud Crutch days to find something that the audience couldn't sing along with. I'm not sure why the music of Tom Petty and the Heartbreakers is so appealing to so many. Perhaps other avid fans who I know are out there can do a better job of articulating a reason.

There are several other good news items on the agenda. First, today was my third chemo treatment. Three down, four to go. The effects are cumulative, so I am expecting the weekends to be rough, but so far so good. I still have my hair (more about that later), and my good spirits. And, surprisingly, my appetite returned this week. I have been eating like a normal person. Or at least the way I normally eat. Two days this week I had eggs for breakfast, and I have probably eaten an egg for breakfast only one other time since my diagnosis. I have a healthy appetite for lunch and dinner. I am savoring my food now, instead of shoving it in with a grimace. This is a huge improvement.

Now for the hair. I am really not happy about this issue. Nothing screams CANCER PATIENT! like a bald head on a woman. Right now I have the option of revealing my situation, or not. For those of you who have not seen me lately, I look like Elyse at her "fighting" weight, which is not a bad thing. Last night at the concert, a woman struck up a conversation with me in between sets. We had a pleasant chat, which I enjoyed. If I'm bald, I doubt that I will have the option of chatting idly. Which I enjoy. Once I lose my hair, there will be no escaping the diagnosis, wherever I go.

I have one other matter to address. Princesses like good seats at concerts. This Princess loves good, solid rock and roll, but would pass on a lousy seat to Springsteen, and would not even consider lawn seats at Chastain. This is the same Princess who loves to camp out, but does not like shlepping her dry bag from the raft to the camp site. She loves the outdoors, but does not mind guides cooking her dinner. Or even pitching her tent. As you may have guessed, our seats last night were less than stellar, and they were not inexpensive. So please, if you have suggestions for scoring good tickets at prices that won't make me gasp, and you are willing to share this information with your unconnected-in-the-rock-world friend, I will be eternally grateful. (Please, no jokes about the eternal thing).

I'm bracing myself for a rough weekend, but on balance, life, such as it is, is good.

xoxoxoox

Wednesday, July 9, 2008

With Apologies to the Passover Haggadah

The Four Questions according to Elyse:

Why is my cancer treatment different from all other cancer treatments?

1. All other treatments that include radiation and chemotherapy run them consecutively. Why are my treatments concurrent?

2. All other chemotherapy treatments are administered every 21 days. Why are mine weekly?

3. Many cancer patients do not lose their hair. Why must I?

4. Typically, cancer patients receiving chemotherapy have ports. Why don't I?

The Answers:

Questions 1 and 2 - The answers seem obvious. I am receiving VAT. Very Aggressive Treatment. There are clearly physical challenges associated with VAT. For one, I have to be at St. Jo's every weekday. Thursdays are out due to chemo, Fridays are iffy, and Saturdays and Sundays are rough. So that just leaves Mon-Tues-Weds. With chemotherapy every 7 days, it leaves very little time for me to make concrete social, work and exercise plans. I have been told that patients on the 21 day chemo cycle can have good weeks between treatments.

Question 3 - Fine Georgia Whine. Move on.

Question 4 - Dubovsky indicated that he intended to avoid any unnecessary invasive procedure. I like to think he is being optimistic, but that is only my speculation.

In short, not every day, or every part of the day is great. The ultimate planning machine is now barred from one of the things she does best. But in some intangible ways my strength is growing. I know that I have the resolve to beat this, and at times I can actually feel that determination. And do not discount, for even a single second, that every email, get well card, helping hand, telephone call, blog comment, and virtual and real hug that I receive does not fuel that strength.

So I take my little steps and move forward. I have been resting up all morning, I will get my radiation treatment, and I will get in one more nap before the concert tonight.

I know it's only Rock and Roll (ha!), but I like it. Thank you for helping me get there.

With love, and more apologies to Mick and crew,

Elyse

Sunday, July 6, 2008

There are friends and there are law partners, but there is only one Amy Waggoner.

Below you will find links to a truly incredible part of this journey. I know that we find rays of hope in many places, during good times and especially during the bad times. Thanks to the extraordinary support I have received, I have been fortunate to have experienced many bright moments over these past weeks. So far, the only good I can see coming out of bad is the power of those encouraging experiences. But bringing into fruition the vision of Amy, with the help of Mark Spiegel, Heather Stanley, Mary Eckwall, Lauren Alexander, Marsha Schechtman, David Alexander, Lynn Whitten, and Rachel Jacobson propel me to a level of hope for which words really do escape me. When you view these sites you will surely understand the reason I am rendered speechless.

www.teamdream2009.com

www.firstgiving.com/teamdream2009
A slightly belated happy birthday to America. John and I celebrated with friends at Club Falkenstein. Ruth and David have a great house for entertaining, and they sure know how to use it.

This has been a quiet weekend. I have not had much energy, so other than a trip to Target, I remained at home enjoying visits from friends. And home made pizza. Michael, you cook like nobody's business.

With my lower energy level, this week may be quieter than last week. My goal is to make it to the Tom Petty concert on Wednesday night. As the good fates would have it, that is the best possible night for me. Erev chemo.

So, I just wanted to say hello to my supporters out there, and let you know I was thinking about you. All of you. But before I sign off, I am reprinting below an article from Saturday's AJC. This article goes out to all you Springsteen fans, me included, who have been searching for just the right words to articulate some of the ways in which this man and his music touch us.


'Boss' of spirituality
Minister dissects catalog, finds hope

By Ron Csillag
Religion News Service
Published on: 07/05/08
To millions of fans, he's "the Boss," the bluejeaned troubadour of the American heartland who finds nobility in the grind of daily life.
Across 35 years in dozens of rock anthems, from "Born to Run" to "Glory Days" to "Born in the U.S.A.," Bruce Springsteen has chronicled lost souls, haunted war veterans, gritty factory workers, and highways jammed with broken heroes —- but also advanced themes of redemption, hope and keeping the faith.

It's been a rich vein of spiritual motifs, and the politically progressive 58-year-old singer-songwriter has given voice to society's dispossessed. His work of late has been bleak, brooding and introspective, even grieving.
But the Boss as spiritual guidepost?
Jeffrey Symynkywicz, a Unitarian Universalist minister on Boston's South Shore and dedicated Springsteen fan, has pored over the singer's rich, multilayered lyrics and viewed them through a theological lens. The result is the new "The Gospel According to Bruce Springsteen," the latest addition to a crowded genre that mines the spiritual in pop culture.
A Harvard Divinity School graduate, Symynkywicz stresses that he's not out to peddle the First Church of Bruce. His admiration for Springsteen is rooted more in the inspirational and empathetic than the theological.
"What's inspiring about him is that he has so much to say about different life stages that we all go through," Symynkywicz said from his church in suburban Stoughton, Mass. "The thing I really like about his music as I've gotten older is that he gets older too. His music deepens and matures and he sings like a grown-up."
It's been a frenzied, often frightening time —- one Springsteen has faced unflinchingly —- and he's brought the rest of us along for the ride.
"When we discern that Springsteen is 'there' for us —- when we feel as though he is addressing us directly and personally in his songs," Symynkywicz writes, "his work seems to put down strong roots in our own experience. His music helps us to make sense of the sometimes tangled, often disparate threads of our lives."
At its foundation, Symynkywicz adds, it's a religious undertaking, a ministry of healing —- a task that gets to the very meaning of the word religion. But Springsteen's canon is neither sufficiently creedal nor doctrinaire to stand up as theology, Symynkywicz emphasizes.
"What he does for me is help me discern my own traditions, my own personal theology and faith —- but more deeply."
So it's more like good news —- "the affirmation that no principality or power —- no forces seen or unseen, no terror-mad souls or devilish plots —- can ever separate us from the love that is in our souls."
The Boss himself does not shy away from overt religious imagery. "Jesus was an only son as he walked up Calvary Hill," he sang on 2005's "Devils & Dust." Springsteen was raised a Roman Catholic in New Jersey and attended a parochial school where, according to one biography, he clashed with both the nuns and other students.
He told The New York Times a couple of years ago that he isn't a churchgoer, but "as I got older, I got less defensive about it. I thought, I've inherited this particular landscape, and I can build it into something of my own."
It's not so much Springsteen's personal faith in which Symynkywicz finds comfort, but in his working-class roots.
"It was very much like the working-class family I grew up in . . . the same kinds of fights with my father," the author says. "That's why I recognize in him the reality of when he sings about working people and [their] limited horizons, but also the palpable reality of real life. It's authentic."
Symynkywicz, 53, chuckles when asked whether his congregants are accustomed to Springsteen-infused sermons. "They're probably sick of hearing it," he says. He's seen the Boss in concert seven times, which makes him a far cry from being a "Tramp" —- the die-hards who follow the singer around everywhere.
Still, the author does what few fans have: dissect Springsteen's 250-song catalog over 14 studio albums, starting with 1973's "Greetings From Asbury Park, N.J." to last year's "Magic." He unearths a treasure-trove of hard-knock life lessons; analogues to biblical passages and other spiritual writings; and examples of redemption, courage, hope and love.
Symynkywicz's book is the latest in a niche that looks for, and sometimes finds, the spiritual in the pop landscape, from "Peanuts" to "The Simpsons," "Harry Potter," "Seinfeld" and "Buffy the Vampire Slayer."
"Writers, singers, filmmakers and TV producers are the mythmakers for our times," the author explains. "People don't just want to consume popular culture —- though some people do —- they want to discern what's deeper in there and what meaning it gives their lives."
Ultimately, Symynkywicz sees a kind of rough, defiant hope in Springsteen's songs.
"He's hopeful rather than optimistic. 'Everybody has a reason to begin again,' he sings in 'Long Walk Home.' There's always a reason to go on.
"But it's a tough hope in a tough world —- a world that isn't, on the surface, getting better. There is a hopefulness there —- that we can turn things around and move in a more progressive direction."

Thursday, July 3, 2008

I do not feel compelled to write in this blog unless I either have what I think is important information to impart to my caring community, and/or to share some perspective connected with my "adventure." Until I sat down to write tonight, in my mind I had neither. As matters of fact, yesterday looked like Monday and Tuesday, in that I had my radiation treatment, walked on the Greenway with friends, and went to work. The only difference is that I attended a work-related meeting yesterday evening. It was a big deal because I would not have gone had I not felt up to it, and even then I had to plan my afternoon around resting and building up the energy to make the trip. But as I reflected upon the evening just now, what struck me is how incredibly normal it felt to me to be there. Sure, everyone there was especially happy to see me and vice versa, and I received all the hugs I needed and wanted; but it felt like a naturally-occurring event. That for whatever reason, I was there because I am meant to be there.

As for today, it was similar to last Thursday. Radiation followed by chemotherapy. It was still a long day, but what differed from last week is that I was not as frightened, having already experienced it. With all due respect to John, with whom I have spent many quality hours over these many weeks, including that first chemotherapy treatment, I was able to tolerate today's treatments without a problem, and enjoy the companionship of my friend who accompanied me.

So, without intending to generate any significant information or a (completely subjective) meaningful insight from these recent experiences, I believe that I am brought back around to The New Normal.

First, I have just completed a full week of treatment. I now have experience so I have some idea what to expect. Same with taking a walk and heading into the office. I can handle each of these things, and so can my extraordinary friends and colleagues.

Second, my meeting last night brought together my past, present, and future. This is a place where I wanted to be before this adventure began, where I wanted to be last night, and where I want to be in the future. This may be an unexpected insight. Perhaps in the future I will be choosing more places I want to be, rather than where I feel I should, or need to be.

Finally, I am in awe of the quality and quantity of the responses to my last posting. Thank you for the suggestions for filling my time and finding peace. As for the insights on faith and spirituality, I suspect that this will be a life-long quest. Which I hope spans a loooooong time.

In closing, I must remind you that I am high on steroids, which brings to mind Tigger and his choice of parting words. (Whatever, people. I'm allowed to do what I want here.)

TTFN

Tuesday, July 1, 2008

I have now had two days with some semblance of a routine. Treatment, walk on the Greenway, lunch, face time at the office, then home. I'm not so sure that I can keep this up, or that this best serves my needs. Treatment aside, each activity is something I want to do, but put it all together and it feels like a lot right now.

What I feel like I am most lacking is a place of peace - the place I want to go when I am too tired to do anything else. I nap, I meditate, but that does not fill the time. I love to read but have had a difficult time focusing on the many wonderful books that surround me. Television is not my thing, and although I love movies, I can only watch happy ones, and for just so long. It probably does not come as a surprise to any of you that prior to this fiasco that my preferred leisure activity involved movement of some sort. Bike, paddle, run, walk, snow ski, water ski, almost any type of exercise that tickled my fancy. I've never been a triathlete, but I always enjoyed the heck out of a day on the Nantahala, the ski slope, or biking the Greenway.

Cause for complaint or new opportunity?

Is my challenge due to a genetic time bomb or life lesson needed to be learned?

The result of environmental negligence or pure, unadulterated fate?

Many times over the last weeks I have been asked about my faith, and about my belief in a higher power. Of my friends, family and acquaintances, I can only predict with absolute certainty the response to that question from my dear friend MS. (I am confident that you know who you are and I don't want to single you out without your permission.)

Clearly, this is my journey, not yours. But, I must admit to being curious to see if there will be any serious and/or insightful responses to these queries. This topic is not meant to embarrass anyone, or elicit reluctant responses. I do assume, however, that these are not original questions, and that all of you have pondered these, or similar themes during your lives.

And, any suggestions for sedentary activities are more than welcome. Except needlepoint. Yuck. Sorry Vicki, but needlepoint is also not my thing.