On Monday evening, March 1, 2010 at 6:40 pm (EST) loving wife, mother, friend, and eternal activist Victoria Alda Simons died of lung cancer at her home in Ghent, NY surrounded by her loving family.

For 15 years she was editor of the twice-weekly Independent Newspaper, published out of Hillsdale and serving as official newspaper-of-record for virtually every government entity in Columbia and southern Rensselaer counties.

Following sale of the paper in 2001, she became a participating founder and first executive director of Columbia County Bounty, a non-profit that connects local farmers to local chefs and consumers to promote local agriculture. She played an integral role in expanding the Bounty model to other Hudson Valley counties, and last year coordinated Bounty’s signature “Taste of….” event.

In 1996 she was elected as the first woman to serve on the board of the Columbia County Agricultural Society, which puts on the annual Columbia County Fair. Among other responsibilities, she handled marketing, corporate sponsorships, and efforts to expand use of the fairgrounds for other events. She held the title of vice-president until she was named a board member emerita in 2009.

In 2005 she volunteered with Unite for Sight, providing simple eye care to Burmese refugees in Northern Thailand. Immediately following Hurricane Katrina, she spent a month as shelter director with the American Red Cross in Louisiana.

During her career as editor of The Independent, which she co-owned with her husband Tony Jones, the paper compiled an impressive record of growth, including acquiring an arts and entertainment publication, The Paper, and two antiquing guides. The newspaper was honored as the inaugural recipient of the Columbia County Chamber of Commerce’s Crystal Apple Award.

During her newspaper career, Vicki served as President of the New York Press Association during 1996-97, and also helped create the Center for Community Journalism at SUNY Oswego. In 1998 she received the National Newspaper Association’s Emma C. McKinney Award for outstanding leadership and service in the field of community journalism.

Outside her work, she was involved in a wide array of community service activities, including serving with Tony for 6 years as Columbia County Coordinators of the Fresh Air Fund. Lamark Murray spent seven summers with them and continues in touch 22 years later.

Additionally, she was a founder and first coordinator of Roe Jan Hospice. She served several years on the boards of United Way of Columbia & Greene Counties and Upper Hudson Planned Parenthood. She was a volunteer with International Friendship Exchange, a coach for the Ghent Junior Girls Softball League, and a long-time participant in the Leadership Columbia County media trainings.

A graduate of the Skip Barber Driving School, she was an avid golfer who served on the Board of the Columbia Golf & Country Club.

A journalist to the end, she bravely, courageously, and openly catalogued her entire battle with lung cancer on this blog for people to learn from and share in her experience.

Born August 9, 1944 in St Louis, MO, she was the daughter of the late Henry N. and Harriette A. Simons, of Manhattan, who survives.

She graduated from Mary A. Burnham School before attending Cornell University and earning a B.A. in English Literature from Queens College.

She worked as a counselor in one of the country’s first licensed abortion clinics, Eastern Women’s Center in Manhattan, where she eventually became vice-president for operations, including affiliate clinics in Boston and Kansas City. She earned an M.P.A. in Health Care Administration from New York University, and was active in the founding of the National Abortion Federation.

She and her husband, who met in Marrakesh, Morocco in 1971, moved to Columbia County from Manhattan in 1977, settling first in Copake and moving to Ghent in 1992.

In Copake she worked as director of distribution for independent New York video producer Martha Stuart. She and her husband later founded MessageDesk in Hillsdale before purchasing the Roe Jan Independent newspaper in 1986.

In addition to her mother, Vicki is survived by her husband Tony Jones of Ghent; two daughters, Eleanor Jones Rossi (Robert) of Brooklyn, and Mara Simons-Jones of Austin, TX; sons Christopher K. Jones (Gwenda Marchione) of Ghent; Jayson H. Simons-Jones of Crested Butte, CO; D. Hamilton Simons-Jones (Annette) of New Orleans, LA; two grandsons, Casey and Christopher Jones of Ghent; two granddaughters, Charlotte and Arabelle Rossi of Brooklyn; brother F. Adam Simons of Los Angeles; and the family golden retriever Maxwell, a loyal companion during her illness.

A celebration of her life will be held at the Columbia County Fairhouse in Chatham at 1:30 p.m. on Sunday, March 14. In lieu of flowers, donations can be made to the Central Asia Institute, P.O. Box 7209, Bozeman, MT 59771 (http://www.ikat.org/); or the Community Hospice of Columbia & Greene Counties, 47 Liberty Street, Catskill, NY 12414.

Posted By --- Her Loving Family (Tony, Jayson, Hamilton, Mara, Chris, Ellie, Harriette, Adam, Casey, CJ, Charlotte, Arabelle, Rob Rossi, Gwen Marchione, Annette Simons-Jones, and of course Maxwell the golden retreiver)

Anniversary

Today is exactly five months since my diagnosis of Stage IV lung cancer. It really seems like a lifetime ago, and it sort of is -- spending this time reminiscing about a chockful, wonderful life.
But for those of you that I don't get to see, time for a brief medical update. As expected, my physical world has shrunk pretty dramatically, although not my mental. The good news is I am not in any pain, sleep well at night and still enjoy a good meal.
The not-so-good-news is I am already weak, spending most of my time in bed. Perhaps the wheelchair delivered today will help get me back out to the dining room. I can't imagine leaving the house anymore, though. Somehow the pill bottle count on my nightstand has grown to eight, but luckily,I can still manage them so I am alert, not drugged or drowsy. The coughing, which can badly interfere with communicating (very frustrating) is nicely under control for the moment. Fingers crossed it stays that way.
A liter of saline 3 times a week keeps me hydrated. So luxurious to get it in my own bed, thanks to Chris. I doubled the steroid dose to see if it helps my right-side weakness. All my typing is now just left-handed, pretty slow-going! It just adds to how difficult it is to keep the blog going, but I am committed, eventually turning to dictation at some point, assuming I can keep the cough under control.

Conversations

An unexpected and welcome gift out of all this is "conversations" with friends, mostly via e-mail. By telling my story, it has elicited stories from others. Some, of course, about their long-ago successful battle with cancer that I never knew about.
Other conversations have been wonderful reminiscences about early married life, that first apartment together in Manhattan and working out a life together.
I have also enjoyed discussing the many different was some of us have parented in an effort to raise healthy, productive children. We, for example, were a team sports family. One of my favorite things was to cheer from the sidelines, starting with Little League and moving onto softball, football, lacrosse, field hockey and basketball. A friend, on the other hand, did individual sports, cycling, etc. And while we went off to the Cape for a couple of weeks in summer, her family went to Latin America!
And then there was the story from a friend who was a health care professional whose adoption came through at the same time she learned her mother was dying. With the support of her husband she took the baby to her mother's. She tells of her big family all pitching in with night baby feedings as well as late night care of her mother and "discovering that the 'work' of family was so much more important than the professional career [she] had always put first."
Others have shared their own grief process. It is amazing how individualized it is. One friend said when she got the news her mother was dying, she just cried for a whole day. Then, she never shed another tear, even at the funeral.
When an old friend drove down from Maine, via Boston, in last week's snowstorm, we of course shared family photos, that now include grandchildren. And what struck her is that with this process, it allows me to continue to live in not only the past, but also the present as well as the future.

An Upturn

As anyone who has skimmed this blog knows, the whole experience has been incredibly up and down -- emotionally and physically. Jayson came home Monday night for a quick three-day visit from the mountains of Colorado and what a boost for me! I was showered and dressed Tuesday morning before he was even up.
We just had a very special morning, talking about what was important in our relationship and some about his future, about what I am sad to miss getting to see.
Since I taught him to ski at age 3 by skiing with him between my legs (oh such a young back and strong legs I had then!), he credits me with starting him on what has become a tremendously satisfying career/lifestyle as owner of Crested Butte Mountain Guides.
And for some reason, his lady of choice is almost always an athletic blond.
Last night Jay, Mara, Tony & I had fun looking through family photo albums. We have so many that each child has their own as well as several collective family albums. Tony even dug out some favorite photos of the two of us, looking incredibly young, of course, in Morocco where we met. And Jay was really surprised to see 26-year-old me in Amsterdam, a few months before I met Tony -- long blond hair, slim, all smiles. A very happy time.
Jay asked if I had any regrets, things I didn't get to do and really the only specific was not getting back to Morocco with Tony and the whole family. I guess that's not bad for 65 years.
Snows starting to fall now. Feels good to be typing away. Jay is only half-way through the visit, so till lots to look forward to.

A Downturn

Went out to dinner Saturday night with close friends and Mara and had a great time, but coughed all the way through the meal. They mostly pretended not to notice. When I was done eating, I slipped on the portable oxygen nasal cannula, but it didn't really stop the cough. Maybe the fact it was 15 degrees out had something to do with it?!
But it was a big step for me: first time out in public with what Hamilton calls my "baby bird" hair. No one fell over, so I'm getting pretty comfortable with super, super short hair and big earrings. Even the wait staff, that I've known for years, were very nice about it.
One funny thing: a country club member whom I know just to say hi to stopped by the table to say hello to everyone. He even said hi to Tony by name, looked at me, and never said a word. Don't know if he simply didn't know what to say or he didn't recognize me.
Anyway, Saturday night was a turning point. It was the first night I slept with oxygen. Surprisingly, the nasal cannula is very easy to use, not irritating, not even aware it is there. But I am hooked up pretty much all the time now. Just makes catching my breath after I move around (walk, get dressed, shower, go from room to room) much easier. I've got a 50' chord on it, so I can roam the whole upstairs at will. Luckily, the house design works well. Master bedroom, bathroom, my office, living room, dining room & kitchen are all one floor. Family room and other bedrooms downstairs. I just don't go there anymore. Not worth the effort of climbing back up the stairs. I can still manage the 10 steps from the front door, if I have oxygen on, go very slowly, and sit down as soon as I reach the top. (I give you these details to try to provide a picture of what the disease progression is all about, not to provide a running commentary on lung cancer care but because it obviously frames everything else.) Given how I felt Sunday, we never made it to the Lady Blacksmith Mombazo concert. Chris, Gwen and Garrett went, and brought me home a DVD of an earlier performance to watch.
But I lived to see the New Orleans Saint win a Super Bowl!!!! Who Dat? We Dat!! Very, very exciting.
In the evening, as I tire, I have started taking an Oxycodone to help suppress the cough. Mostly works. I still, though, have no pain beyond what a simple heating pad can handle, so there's still some good news.
But I felt a little like back to my having trouble getting my "sorry ass" out of bed.
Then I realized that when I hit a set-back, it takes me a while (hours, a few days) to find a new equilibrium, to figure out how I can keep doing at least some of what I want under the changed conditions. But rejiggering takes energy, takes a toll. It's tiring.
Sunday, Chris gave me a liter of saline, and while I don't feel the difference, the family said how much better I looked.
Monday, the wonderful hospice medical director came and did an incredibly thorough history, physical, and assessment, spending 75 minutes here. It was more thorough than I'd had since this all started. He tweaked some meds, suggested Ritalin for a little energy boost after hearing my frustration with fatigue, and some possible meds to help with coughing/breathing.
So fingers crossed it helps.

Steroid Kicks In

Well, the day after I wrote I felt like a lazy teenager wanting to sleep till noon, the steroid kicked in and I was up at 6:30 a.m., in the kitchen cooking my own breakfast at 7. Seems both the energy and the appetite stimulant just needed a little more time to work. So I am feeling good again, trying to get out and about as much as possible while I can, although I still get chauffeured most places I go, usually by Tony. I am going to the personal trainer again several times a week, and we have tickets for a Ladysmith Black Mombazo concert Sunday afternoon (have to be home in time to root for the Saints in the Super Bowl).
I am still pain free, for the moment. Any back discomfort I have from the adrenal tumor responds very nicely to a heating pad. Yesterday, just to try it out, I put the oxygen on through a nasal canula. But I was just sitting while I did it, which is not when I tend to get short of breath. Really, I guess to test it I should have Tony hook up the 50' tubing and walk around the house, or try coming up the front steps, which does make me breathless. But so far, once I sit down, I recover full breath within a few minutes. So I guess I'll wait a while longer on that.
Chris has done a wonderful job of handling the few hydration issues I have. Sunday morning he came over and ran a saline IV drip for a couple of hours and brought his guitar to serenade me. He has done a fair amount of performing, has a great voice and a huge repertoire. It was really wonderful.
Hamilton has been here for a week. With our wifi, he can work from here, although he heads back to New Orleans tomorrow for meetings. Last weekend, his close friend (the best man at his wedding) and his fiancee (they are to be married on Tony's and my anniversary) along with their long-time family cook-housekeeper-2nd mother (there's really no single word to describe her), brought over a fabulous four-course meal that we devoured. Then, Sunday, Rob & Ellie and the huggables came up, and along with the local Ghent crew and a really good friend of Mara's, we were 13 for dinner. It was great.
I really can't imagine how hard it must be for families when a loved one just suddenly drops dead. This time we are having together is so, so precious. It gives us the opportunity to express what we mean to each other, how we have impacted each others' lives. I am really blown away by some of the things my children have told me about the ways I have affected them. And amazingly, they seem only to remember the good things, or at least that's all they are sharing. Lots of tears, of course, but it's all part of the connectedness. Very powerful.
But we also have our light moments. We had a great time last night playing various favorite songs, to make selections for a memorial service. It wasn't maudlin at all. Just great fun. And after all, I like planning parties, so I love having a voice in it.
Off to the city tomorrow (Chris is taking me) to visit my 90-year-old mother, who still lives on her own. Figure I need to go while I still can.

Status Update

Returning to Florida for the month of February is off the table. It just got way too complicated, trying to prepare for all the possible medical issues. I don't really feel up to the travel and it suddenly seemed crazy to be driving everyone nuts trying to make this happen. That's why we went for two weeks in January, fearing that February was a long way away.
But to back up a bit, Tony & I were set to fly home from our two-week stay Jan. 19th. But that night, for the first (and so far the last time), I had lung pain. So I took some morphine. Turns out, morphine doesn't quite agree with me. It took care of the pain, but produced vomiting, so much so that I couldn't keep the anti-nausea pill down. I finally managed and off we headed to the airport. I was in a bit of fog. But the pill didn't quite work, and the movement of getting up out of the wheelchair to walk onto the plane started to produce retching. I made it to the bathroom, leaving Tony to argue with the steward that we should not be thrown off the plane because I was too sick to travel! Tony managed to convince them, and the flight attendants were very relieved to just see me sleep the whole way, or try to -- with a three-year-old kicking my seat and an 18-month-old shrieking. Parents were very apologetic, but jeeesh. Don't people know how to control their kids?? (I sound like a grumpy old lady, but I felt like one.)
Mara picked us up at LaGuardia (her timing great driving back with Ellie from packing up her place in Austin, TX) and the ride home was uneventful. Dear, dear Chris literally had the home-fires burning, even hot packs in my bed. He greeted me with an IV of saline that perked me right up.
But clearly there were new issues. Chris was pushing for me to start taking some palliative drugs, to help extend quality of life, and I was resisting. I finally realized that my resistance was simply not wanting to acknowledge that I had gone somewhat downhill. Once I realized that, Tony, Mara, Chris & I met with my primary care doctor (no more need for the oncologist) and last Friday night, I started on a steroid. Its purpose is to alleviate nausea, reduce inflammation around the tumors, since it is often the inflammation rather than the tumor that causes problems. It was also hoped it would boost appetite and energy and perhaps help with the occasional shortness of breath. So far, it hasn't done those things, but I gather it yet may.
And although the steroid "has no real side effects," I also walked out with four other medications -- to treat potential side effects. It's such a cascading effect. One drug requires the balancing of another drug and so on.
Today, oxygen was delivered, so here it is here for a hopefully far-future need. Tomorrow, the hospice in-take nurse makes her first official visit to sign me up, in part so all this stuff will be covered by Medicare. Would you believe that a Stage IV lung cancer patient can't get oxygen -- unless I'm officially in hospice. Oh our wonderful health care system.
So I am not taking any pain meds, none needed, thank goodness. But mornings are hard. I just simply have no energy, no appetite. By afternoon, I feel human and can get off the bed and do some simple stuff around the house. It really harkens back to my teenage days. I was always a very, very late sleeper -- noon if my parents would let me. So once again, I am not a "morning person." So I'll just have to plan my outings for the afternoon & early evening. We are hoping to do some fun stuff in the city as well as around here.
Meanwhile, all the kids who were coming to Florida are changing reservations and heading home for a visit, so once again, it will be a wonderful steady stream of children & grandchildren. I think everyone is anxious to come while I am still in decent shape.