DEMO DIVA

Here it is mid June already and my garden is blooming with all kinds of vegetation from petite roses to giant gourds. I find myself having flashbacks of last summer when I spent so much of my time healing and surviving chemotherapy. I took pictures of the food I made that I could actually taste and enjoy. I still want to do a little chemo cookbook. I'm handling the hot weather so much better this year than I have for a very long time. I credit my new body chemistry to eating large amounts of spring greens from the garden, Mustard, kale, Swiss Chard, Beet greens and several kinds of lettuces and herbs. Today in Philadelphia we have a glorious sunny blues skies 73 degree perfect day.
I'll be going to work this afternoon at Trader Joe's where I find that people are amazed that I look so well. I don't know why that should be, if anything I feel that having had cancer was an opportunity to be even healthier and stronger than before. I'm proud to have that reaction and I hope others will get the message that cancer is not synonymous with death and deal with it sooner rather than later.
Here is some of the harvest and some of the cooked dishes.
At the top is a stir fry with onions, baby carrots, mini zucchini, mustard greens, lemon verbena, and chicken breast. Next are miniature roses, day lilies, and other flowers. Bottom is the most amazing salad with four kinds of lettuce, baby beet greens and nasturtium flowers all picked fresh today.

On April 23, 2011 it will be one year since I was diagnosed with AML leukemia. I try to bury the memories of the pain and helplessness that I felt at the time. I am now in remission and considered cured. I endured six months of Chemotherapy and almost three months as an inpatient at Hospital of the University of Pennsylvania. My journey would have been so much harder and lonelier if it were not for my fellow crew members at Trader Joe's.

In the first days at the hospital it became clear that I would not be able to eat the food served by the hospital. I called my captain Gordon at Trader Joe's and tearfully told him of my situation, he then had another crew member take a list of things I needed. Within a few hours long time crew member Hope had arrived with two full bags of groceries and a case of bottled water. Gordon refused to take payment and I was finally able to get some real nourishment after five days of eating almost nothing. The next day crew member Bonnie came with her partner Teresa and delivered a small microwave and table for my room. Since the hospital provided me with a refrigerator I was now able to make simple, nourishing food for myself . Over the next forty days of my first admission crew members took turns visiting me and bringing me food that they had made for me. The food and the visits kept my spirits up and was a great factor in my recovery.

Over the course of my treatment I received dozens of transfusions of both blood and platelets, It takes an average of 124 donors to treat one person with AML leukemia. Inspired by my situation and the awareness it brought of the importance of donating blood the crew organized a blood drive and had close to 40 donors participate.

I was doing some Spring cleaning the other day and came across two gift bags stuffed with dozens of cards and letters of encouragement most of which came from the crew at TJ's.

I will be forever grateful to my friends at Trader Joe's. They really treated me like family and were always there for me when I needed them.

Below is a comment I wrote in response to the blog post by Dr. Chen in the New York Times. It was such a thrill to see it posted and have 15 readers recommend it. Several readers referenced it in their comments which tells me there is a lot of interest in the subject. One who signed herself a dietitian was very defensive. Basically her defense was that hospitals outsource the food services and that doctors order unpalatable low salt or no sugar meals. The inference here is that hospitals and the dietary professionals that work there should not be responsible for the bad food served there. So then who is responsible when it's your job to provide a diet of food that a patient can eat ? Who is to blame when patients become malnourished and don't heal as well as a result of poor nutrition ? She also said her experience of a hospitalization for a delivery was that after 16 hours of delivery she got a sandwich that was good. Gee a turkey on white tastes like ambrosia when you haven't eaten in a day. Try eating a neutropenic meal of soggy cold overcooked frozen vegetables and some sort of reconstituted mystery meat when you're nauseous and hungry at the same time and you've been in the hospital for three weeks ! Am I ranting ? I am and I will continue to do so until changes are made. What about all the poor people who have no one to bring them food and are forced to rely on food services for all their nutrition. When you charge $1000 plus per day for your care you should be able to get good food.

Pictures of some of the hospital trays I got. One is a bread like block that the menu says is "Quiche Florentine", but it doesn't appear to have any eggs, spinach or crust. It tasted and had the texture of something you would feed a hamster. The grilled cheese is cheap white bread grilled in a butter substitute with a really small slice of processed mystery cheese. It smelled like motor oil so I didn't attempt to eat it. The banana was so green and hard I almost cried because I was so hungry and there was no way I could eat it.

Here's the comment posted yesterday

Demodiva
Philadelphia pa
March 17th, 2011
10:24 am
What could make a great hospital even better is good food and continuity of care ! Having survived six months of chemo for AML I found the continuity of care a problem and the food atrocious at a big city teaching hospital. They have designated areas for cancer treatment but if they get crowded you end up on a "general" floor where you have less specialty trained personal and as a result a less happy patient. The food is all reconstituted high sodium processed non-food. I was even told they keep it that way to discourage patients from staying longer ! One of the problems with cancer is "wasting" and as a food professional it was horrible to see caretakers so desperate to get their loved ones to eat that they resorted to cheese steaks and other fast food from the carts located across the street. If hospitals would pay as much attention to patient comfort as they do to biology the overall results would have a huge impact on every aspect of care. It costs so little to serve healthy food that tastes good. With all the cooking shows and food awareness why is hospital food still notoriously bad. The best hospitals will lose the best paying customers to cancer centers and other facilities who make patient comfort as important as medical care. Then we all lose because those teaching hospitals that make the miracle breakthroughs will have less money to fund themselves.
Recommend Recommended by 15 Readers

Lastly something positive. I'm performing in "Jesus Christ Superstar" at the Narberth Community Theatre. We're playing to full houses and standing ovations.I play Mary mother of Christ,and I'm singing and dancing again after 10 years off stage. I posted the picture of me in costume on facebook and my son put a caption "My mother is Divine". I love my son. I love my readers, friends and family you give me hope and make me so happy.

My mom died on December 31 New Years Eve 2010. My only regret is that she did not have a peaceful painless death. I took care of her for the ten days in and out of the hospital and back to the Nursing care portion of her retirement home. It took a toll on my own health. My blood counts dropped so low that my oncologist concerned that I might be in relapse scheduled a repeat biopsy.I recovered and didn't need the biopsy and now feel very well again. It's a real lesson about the impact of stress to one's health. Stress can do more harm than just about anything.
The weather has been so extreme over the last 10 months. In summer while I was in the middle of chemo the heat was unbearable and forced me indoors for weeks at a time. Now the mountains of snow then ice have put me back inside again. I think I should be writing. This week I'm going to start my memoir/chemo cookbook which I hope will be engaging and helpful to others faced with similar situations.
I miss my Mom and now know how she felt when she would read an obituary about an old acquaintance or found a long lost watch or other keepsake and think "I'll have to tell Joe about this". Now she is gone and my Aunt Florence said of her funeral that she dressed to meet Joe in heaven. Here is a little rough video of her funeral, be warned it was an open casket. I made it for my sister Elaine who could not be in attendance.

It's now one month since my Doctor declared me cured of leukemia stopped all medications and cleared me to start living my life again. I auditioned for a role in "Jesus Christ Superstar" and was chosen for the ensemble and they are creating a featured role for me as Mary mother of Christ. I also joined a writers group and have pulled my writing out from the bottom of a plastic storage box. I attended the first meeting on Saturday and submitted my first piece for critique for the next meeting. There's also a play writing group I joined even though I haven't attempted a play since high school. I have all this dialogue streaming around in my head looking for a place to land so I'm going to focus and channel it into a play. A play about family, which is what most plays are all about. Finding the discipline to write everyday will be the next challenge.
My garden has finally succumbed to the first frosty winter weather and I'm eating the last of the hearty mustard greens,fennel and Swiss chard. The beets and herbs are still growing so I'm leaving them. Then I'll cover the beds with composted leaves and make a plan for the Spring.
I've signed up for okcupid and wish there was a more romantic and magical way to connect with the our possible mates. I was having trouble finding men in my age group so I paid for one month of seniorpeoplemeet . I got lots of hits from all over the country after I put into the first line of the profile saying I'm not interested in chat, IM or long distance relationships! Why do so many old guys have huge motorcycles? I have to wonder if they aren't trying to compensate for something lacking in their lives. I can't figure out what they're thinking with prominent photos of the beloved bike on their profile. Are there really that many biker babes looking for a ride ? I've also noted that most of the biker boys have never been married or have kids. If you're in your 50's to 60's and have never been married or raised a child that raises question marks for me about whether this person can sustain a relationship. I'm sure there are exceptions but I'm not very confident that they will be right for me. So what am I really looking for anyway ? I'm not in a space to "live on love" but rather I need someone who is self sustaining and can afford dinner and a movie or a night at a jazz club or theater tickets for both of us. Someone who can speak and write literately. You would not believe some of the letters I've received ! Someone who is fit and takes care of themselves and doesn't have any really weird dietary restrictions. I guess open minded and interested in current affairs and with a sense of humor. Already I think I'm asking too much. It makes me wonder if I shouldn't just accept that I'm pretty good on my own. Then I look at the wonderful meal I've cooked and wish I could share it with an appreciative partner, and I also miss the kissing and cuddling. So what's a girl to do ?
I have to go for a repeat blood test tomorrow because the routine follow up test I had last week showed a low platelet count it's 95,000 when normal is 150,000 to 450,000. Just one more lingering side effect of chemotherapy I'm told. I'm still at a 70% risk of relapse over the next two to five years so any set back is worrisome. I still feel very good and plan to go to the gym today although with counts under 100,000 I'm vulnerable to bruising and bleeding so I'll be swimming laps.
Photo is me modeling for a famous New York fashion photographer in 1969.

Now five weeks post chemo and finally starting to feel like my body is coming back. As I have been cautioned after six months of very high dose chemo I need to be patient. My mind says run up the stairs to get the cellphone I left behind, and when I get to the landing my heart says you idiot now you have to lie down and catch your breath ! My beautiful boys were with me for my 60th birthday and it was wonderful. They left me with a much safer apartment as they fixed faulty electric outlets in this 1918 house and gave me lots of gifts including a magical IPAD. I'm so proud of what wonderful, resourceful young men they have become. I look forward to seeing them all again soon.
Having now been in the "system" for six months a few things about what happens in America when we get really sick. It was very difficult to get the benefits I am entitled to through my job or through government programs. If I didn't have help and advocacy from family and friends I might have given up in despair. In Hawaii universal health insurance for everyone has been in place since the 1970's so living here is quite a change. If you have no insurance here it's a nightmare from hell to get decent care and treatment. And when your coverage changes from regular to COBRA as mine has you can feel the pullback however subtle. I nearly lost my disability and health insurance when I was in the hospital for 40 days and urgent mail was sent to my home with no one aware it was there. By the time I received it I had 24 hours to fax the medical information to the carrier or I would be cut off. It was the only time I vomited during my treatment. I remember hanging over the sink at three am and being in such profound despair that I didn't care whether I lived or died at that moment. Getting signed up for COBRA after I had enrolled online required three phone calls and a near meltdown to assure I had coverage for the last round of chemo. And yeah that great insurance that you thought you had has a lot of loopholes for patient payments that you would never know about unless you got really sick. So people who want to repeal Health Care reform either have never been really sick or they just don't get it. In Hawaii all my Medical and prescriptions were covered 100 per cent. And guess what ? People in Hawaii never have to worry that their house or car or savings will be wiped out if they get sick. In Hawaii I could follow my passion and make a living as a full time artist. Now I must have a job with benefits stifling all entrepreneurial or creative desires for making a living. I'm lucky to really like the job I have but there are thousands of people who must work jobs that don't give them any pleasure because they have to have benefits. This is hurting our whole society and making the American dream a lost cause.
We all have to care about this issue. My oncologist shocked me with the current cancer statistics. In our generation 50% of women and one in three men will have cancer in their lifetimes.
As I continue in the healing process I will be awakening my creativity and making art every day and singing and dancing. In other words whatever happens I'm going to choose to be happy.

In October 2001 I started making angels from the beach glass I collected along the beaches of Kauai and the other Hawaiian islands, but mostly from the trash dumps and landfills on the Westside of Kauai. It was my goal to make one for every person who died on 9/11 and as of today they number 1887 and have been purchased or gifted to people all over the world. As it gets closer to the 10th anniversary I would like to finish all of them. I want to collect glass along the rivers of lower Manhattan and around the island. When I am finished with my treatment I will do this. Since I moved to Philadelphia I have been collecting the glass in Riverton NJ along the Delaware river. Much of the glass there is old and the pieces are larger not having been smashed up in the surf as they are in Hawaii. I miss the time I spent lost in creating these little shiny beings that reflect the sunlight or Christmas tree lights in amazing ways. I look forward to having the energy and enthusiasm for my crafting again.

Beautiful perfect fall weather today so feeling good I planted some Swiss Chard, a salad mixture and some cilantro. One of the best things I've ever tasted is the fresh coriander seed of the cilantro, citrusy crunchy and delicious in salad dressing or added to couscous. The giant blue morning glories have finally stared to bloom and my fall garden is really shaping up nicely.

I have to reluctantly go in for my last round of chemo this week. I'm feeling well enough to believe I can take another bout with the low blood counts, neutropenia nausea and other stuff related to having your whole body assaulted with toxic chemicals. I will get through it and plan to live another 40 years or so.