Monday, March 15, 2010

Margie: Happy to be alive

Our beloved Margie.
Doing well, all things considered.
Asked on a scale of 1-10 whether she's happy to be alive, she says she's very happy to be alive as long as there are people she loves around her and in her heart.

(Anabel notes, " That is not on a scale of 1-10", I say, "It's a perfect response!" cc)

Sunday, March 7, 2010

Marjorie Going Chemo-Free.

Margie's participation in an experimental drug trial has not succeeded in stopping her cancer cells from growing. Now there are more in her liver. She has gone about two weeks without further chemo of any kind. The down side involved several days in Cottage Hospital because of side effects from the last chemo: dehydration, low sodium, anemia. Her daughter, Anabel, was by her side and a huge advocate.

Now Margie is home, resting but also getting out to enjoy new friends at Vista del Monte, including long conversations over breakfast. She plans to have dinner with a group of dear friends and concert-going gals on Tuesday, though she probably won't go to the concert after dinner. Her son, Steve, visited Friday evening and all day Saturday, and Margie got good time with him, his wife, Linda and dear grand children, Ellie and Tyler. She also had the pleasure of seeing Linda's parents again, as they were in California for family visits.

Ceci, Margie's Wisconsin daughter, arrived at 11 PM on Saturday and will stay at least a week, returning again on March 26th with her partner, Donna.

Marjorie has met with a social worker and a nurse from hospice, and she finds them warm, supportive, and informative. She trusts them and she trusts her own choice to concentrate on comfort and joy rather than further rough cancer treatments. Her children are all supportive of her choice as well.

As she regains strength and finds a new (though still changing) "normal", without the toxic drugs going into her body, she will continue to rest but also to reach out to her dear friends for contact, conversation and loving distraction.

Keep her in the light of your hearts as she lives this mysterious journey. We all want peace and joy for her more than anything.

Monday, February 22, 2010

Margie update Feb. 22, 2010



Dear friends and family of Marjorie Henshaw:

As you all know, Margie is in the midst of a drug trial. In a few weeks, the doctor will be able to measure whether the experimental treatment has affected the spread of her cancer. In the meantime, Margie finds her energy and her pain levels are not predictable. The treatments are taking a toll. Much as she would like to make social plans, she expressed (to me=Ceci) that it is hard to tell if she will have the spirit to really do what she says, "yes" to.

She told me that she does not want to plan very far ahead, and she does not want to commit to any car trips. Of course, driving around Santa Barbara is no problem, but she feels that longer day trips have taken too much out of her in the past weeks. She likes having friends and family join her for lunch or dinner either at Vista del Monte or going out, but being a hostess feels hard. Even with family, she prefers not to have more than a couple of us staying at one time.

Our loving Margie Henshaw has trouble saying, "No" to invitations or visits from friends and loved ones, so do be aware that she may be working to be her energetic and loving self (whom most of us know her as!). May I ask that, when you invite her out or suggest a visit, you please help her take a moment to think about what she wants to do. I find it effective to ask her to take a breath and check in with her body and her energy before she decides. I tell her it's okay, completely okay, if she would rather rest or not make a date. If we do this, we are more likely to get an honest answer, and one that is truly best for her.

love,
Ceci

Wednesday, February 10, 2010

February 10th - Hi from Margie

Ceci and Margie are together for just a few days.

Margie says, "I don't approve of children (e.g., Ceci) who come and visit and leave! They should stick around forever!"

Ceci says, "sorry. any time with my mommy is precious!"

Jane Freund knitted two beautiful mufflers and brought them by while Ceci was in town. Wow!
When we called to thank her, Ron told us she was already in bed. Margie feels she should be in bed early like Jane to get up and start the day much earlier. Meanwhile, Ceci and Margie planned to make it to a documentary that Tonia and the rest of the East Beach Walkers were going to yesterday, but we arrived too late to get in. Nevertheless, we were so happy to see Tom, Bill, Bob and Tonia and get lots of hugs! Missing you all. Hope the movie was a blast.

Margie especially loved hearing messages from Betty Henshaw, and she was delighted to be here and actually pick up the phone for a call all the way from Australia from her very beloved friends Fred and Cheryl!

Mike was over last night to practice penny whistle with Ceci. Both are amateurs but love it. The three of us had dinner out at the Empress Palace, good Chinese and right nearby.

Margie is getting worn out by all the treatments and maybe by the cancer itself, but she is always in good spirits. She enjoys visits with her kids and grandkids. She had an eventful road trip with Steve up to Mendocino a couple of weeks back, right through torrential rains. Included were visits with friends (Lois Roberts) and family (Ellie Edmund) along the way.

Just a couple of weeks before that, Margie loved seeing far flung friends and family at a combination Joe Ford memorial and Ford family reunion at Heritage Square in LA.

Ceci plans to be back again in Santa Barbara in a few weeks and again at her semester break (March 27-April something or other). Donna will be with her then too, which means fun and also having a personal RN for Margie.

Steve and Margie are still putting the finishing touches on Margie's travel memoir. Margie's helper for driving, household stuff, shopping etc, Micheline, is also reading the manuscript aloud with Margie to look for final typos. It turns out that Micheline also lived in the Middle East! What we learn when we share time and tales with one another.

Well, we (Ceci and Margie) need to take a walk just to get air and circulation. I (Ceci) will try to post more often.

Margie loves getting your calls, even if she doesn't always get back to you with a call.

Cheers from sunny Santa Barbara (not so sunny the past few days, but very bright today)!

Sunday, January 10, 2010

January 2010 Update

Marjorie is fighting the cancer with all her spirit, and feeling joy after a long visit from Steve, Linda, Ellie and Tyler, followed by Ceci and culminating with a Ford family celebration honoring the lineage and Joe Ford. On January 9th many many friends and huge numbers of family members came together at Heritage Square in LA, where the home of Joe's grandfather is preserved http://www.heritagesquare.org/. Anabel had organized this fantastic celebration and the day was glorious, with so many wild and crazy stories of brilliance, love and ... well just the unique nature of Joe Ford and his family.

Margie has had success with a second chemo in the past few months, thanks to Steve's following a lead to get mom's tumor cells tested at an experimental lab in Long Beach. Unfortunately, the type of cancer she has morphs like a bacteria and becomes resistant to chemos that at first do work. So the cancer is spreading once again.

Margie is considering going into a drug trial that her oncologist is in favor of, an experimental treatment aimed particularly at "triple negative breast cancer" (Google that and find out more) in metastasis. At the same time, she is having more cells tested at the lab in Long Beach (Rational Therapeutics-- check it on Google too!).

Margie is strong and beautiful. She had her first haircut since the chemo hair loss (last February) on Friday the 8th, just before the Ford gathering. Really, she is radiant and being with all th
ose loving people was such a boost.

I (Ceci) have been here a week and leave tomorrow. Anabel and our cousin Kathy (Texas gal) will be tending to Margie tomorrow as she gets biopsies and discusses the drug trial. Anabel will again be on duty for a number of other doctoring events this week for Margie, but in addition, Anabel has to have a skin cancer procedure herself on Friday (please have her in your hearts).

There were lots of cameras and videos running during the Ford reunion, so watch this site for clips!

Steve has also shared some photos from a trip he gave Margie to visit her older sister near San Diego:




Hang tight for updates and photos with Margie's stylish sassy new haircut!

Love to all.



Tuesday, November 3, 2009

New Dimensions

This past month has presented new dimensions of life. Margie is nearing the end of her second round of chemotherapy and continues to manage her life well. The chemo may be a monthly routine for a while. She has various aches and pains, some certainly related to her living with the cancer, but overall she is chipper and vital. Each day Margie lays out her plans, dresses in style, has her meals in the dining commons. Sabrina comes twice a week for her Pilates exercise, she has begun swimming to help the lymphedema related to her original surgery, and maintaining her social schedule.

We were at an appointment with her surgeon, Dr. Kim Grafton, who is helping to keep a watch on the skin rash, with is the main evidence for the cancer’s spread. We have seen no advance, which is good news, and it seems that there may be some changes that could be a retreat. Grafton was very positive about the review. We do not want to get too excited about it, Grafton is an eternal optimist, yet the fact is that we are looking for a way to live with this cancer and this could be it. Margie is scheduled for the third round of chemotherapy on the 19th November.

As Margie has finished her manuscript and Steve prepares to get it published, the protagonist of her true story, and Margie’s children’s father, Joe Ford, died on 12 October. While he had not been in great health, he seemed stable so this came as a surprise. When Ceci is out for Thanksgiving, we will have a small remembrance with our family and the wonderful caregivers at Villa Alamar, where Joe lived.

Life goes on relentlessly and there is always more to handle.

Saturday, October 10, 2009

Margie’s own spirit that accentuates the positive

The past month has been field with variety of new encounters. Margie has had cataract surgery now in both eyes and is an the last weeks of the drops. The surgery was an immediate success and her vision in both eyes is clear and bright. She will be getting a refraction for new glasses within two weeks. This will give her great reading ability to add to her good long distance vision now.

On the cancer front, there have been downs and ups. Her valiant resilience to the difficult chemotherapy of the beginning of the year coupled with the challenge of radiation that lasted through June did not succeed in mitigating the advance of her triple negative fast growing cancer. Ceci had found a nodule in the midst of the radiation and the redoubling of the radiation effort only burned Margie’s skin. The nodules were reappearing by the end of August.

As she prepared to meet her wonderful surgeon the last week of August to attend to the nodules, an unusual rash appeared on her right side. This the surgeon intuited was the cancer reappearing in the skin. A biopsy confirmed this. In the meantime, Steve found a laboratory in Long Beach run by Dr. Nagourney that would perform tests on cancers to determine reactions to standard chemotherapies. In addition, Margie went in for a CT scan to determine if there was more than just the skin involved in the spread.

Margie’s attitude was straightforward and her daily life was unchanged. In fact she indicated that she felt fine. She continued with her personal trainer, Sabrina, twice a week as well as her active social life. And of course her positive view and her laugh prevail.

The first week of September, in combination with her first cataract surgery, Margie had a nodule removed and packed in dry ice for shipping to Dr. Nagourney Lab. The results came in the following week and showed several options. Margie’s oncologist, Dr. Greenwald, studied the results and had several options that he presented on 14 September, just before her second cataract surgery!

At this meeting we learned the first piece of good news: the CT scan showed that all her solid organs were looking good and were healthy and well. Margie’s resilience was showing here. Her daily life reflects this good news. She awakes daily felling pretty good overall, her strength is good… she can walk around the whole of her complex within 10 minutes and estimates that twice around is about one mile. With Sabirina, she scales all the stairs in her apartment complex helping the strength of her legs.

The cancer skin rash is there, but the CT scan showed no the major organs were affected. Dr. Greenwald said, at this first meeting, that we can see the source of the problem now in the skin and the strategies we could embark on will be visible. His solution would be a new round of chemotherapy, just exactly what, was yet to be fully determined. There were options based on the lab results, but the exact path was not clear. He order that we do no more surgical removal of nodule and to simply watch the skin. In the meantime, Dr. Greenwald felt he had to study the data more, and to talk with Dr. Nagourney’s lab in Long beach to clear up subtleties of the results. We scheduled a meeting for the following Monday.

Ceci arrived for a short 5 day visit over the weekend and was able to be with Margie for her next meeting with Dr. Greenwald on the 21st. Here he presented his solution. He had weighed in several options, but after clarifying details with Dr. Nagourney, Dr. Greenwald felt that he had only one really viable solution. He was anxious to move ahead immediately because, just in the intervening week, he saw the advance of the cancer bloom on Margie’s skin. He felt there was no time to waste. She would go in on Wednesday.

We were told to monitor the rash and see if there was a reaction to the new round of chemotherapy. This was a challenge, as we had reason to think there would be something positive, but did not want to bring out false hopes. To track the rash, Ceci and Anabel reviewed the situation on the 22, the day before the chemotherapy, looking at the extent, the limits, and the nodules (described by Margie not like a pea but like the head of a corsage pin!). Being dispassionate in the observations is important so that the realistic measures are monitored. It was hard. We decided on photography as a way to gauge the changes, and this was later affirmed as a great strategy by the surgeon, Dr. Grafton.

We are two and a half weeks out from the new chemotherapy. There is great news to report:
1. Margie is “tolerating” the chemotherapy very well. Daily rhythm is steady!
2. Margie’s blood work is great, no anemia, no fatigue!
3. Most significant, Margie’s cancer rash is not growing!

Combining these three factors adds up to a strategy to manage Margie’s cancer and maintain her good quality of life. She is hail and strong. Her daily activities continue unchanged, her quality of life is ever improving! One week after the chemo administration, Margie was entertaining 10 wonderful girlfriends she has traditionally lunched with. She arranged the whole event at the Vista del Monte dinning area. They made a exclusive table, decorated it specially for her, and put on nice table settings with wine glasses for her group. Not only was she looking forward to this wonderful event, but she was energized by it. She brought her group up to her apartment and Andreya, one of Margie’s helpers, had her famous Polaroid handy to document the cheer. The best part, Margie exclaimed, was there was no clean up! This past week, the thank you cards poured in acclaiming the luncheon a great success.

While all this medical intrusion weaves through Margie’s life, she has met another milestone, and this with the steadfast support of Steve. Margie’s manuscript, A Quintet in Asia Minor, is complete. Margie is going over a final reading of the nearly 300 pages of text chronically the 10 years between 1956 and 1966 where she reminiscences about our family travels in Europe and the Middle East. It is a tour de force, well written, engagingly paced, and full of her own reflections. Steve has taken his absorbing interest in our family photographs to compile them for the manuscript. He has also worked with Margie’s good friend and artist John Rindlaub to bring to life the numerous maps that help visualize the geography of her memoir. The whole compilation is to be assembled and published as a limited edition by Steve. Expect to hear of the book signing soon!

In sum, we find ourselves cheering the day on a positive note. Our recent meetings with Dr. Greenwald and Dr. Grafton conferring on the state of the cancer rash have been constructive and optimistic. Dr. Greenwald was very encouraged, agreeing with Anabel’s assessment that were not seeing any progression of the skin rash. Ceci reminds us that this is a cancer that grows at an astonishing rate. To see no change is remarkable and noteworthy, and so deemed Dr. Greenwald. We were all very relieved for this news as well as by the good lab results. All of this tallies well with Margie’s own spirit that accentuates the positive, eliminates the negative, latches onto the affirmative and never messes with Mr. in-between.