Flying to Atlanta

Jeffrey Fort's plane taking Lynne and friends to Atlanta.

Tidy Drawers!

Nice folding job! Jo

This is what happens when Jo lives with you! My drawers do not know what to think about being so tidy. I am feeling well except for some swelling in the face and neck. I have chemo tomorrow, Thursday, and I will see the doctor on this visit. Most important, I am scheduled to fly to Atlanta for a family Christmas party on the 29th. Please keep fingers crossed that I am able to go. We are traveling in a friend's jet, and it should be a ton of fun!

Lynne

Home from the hospital

We are home from the hospital with some new medicine for the blood clots and continuing the current chemotherapy. Both are palliative and may slow the progress of the tumors and clots. I feel good, and the pain med is doing its job. Here is a photo of the manager scene Cec brought back from Peru years ago. Jo found it and put it up for us. Also is a memorial from when Carly was chosen to be the Christ child in the Christmas pageant.

Getting a Little General Maintenance

Feelin' Better!

Shawn Tucker came over to work on my neck and 

head on Sunday! Feellin' better!

Lynne Cooper holds uncommon vision of housing as health care

Thanks to Scott Stearman, PhD, a baptist minister on Doorway's board. Special love to Episcopal Dean Michael Allen, Chuck Gulas, Dean at Maryville, and Dennis Hoffert, JD, the three of whom were the original founding force of Doorways.

In Commentary

By Scott L. Stearman, special to the Beacon

12:05 am on Wed, 10.10.12

The Bible's wisdom literature warns that people perish where there is no vision (Proverbs 29:18). Vision, it is implied, is a gift given to a few so that the many might prosper. It is a rare and beautiful gift, this vision that leads people to life.

It is rare, but in every generation there are those who find it, or maybe those who are found by it when circumstances insist. In either case we in St. Louis have been fortunate to live in the same city as a visionary named Lynne Cooper.

Cooper, who very recently retired as president of Doorways Interfaith HIV housing, found the foresight, compassion, energy and pure gumption to save thousands from homelessness and certain death. In the process, Cooper protected countless others who would have been affected and potentially infected by those with HIV. Without a home, those infected with HIV are not only much more likely to get sick and die, but they are many times less likely to take medication. In the case of HIV, this means you are more likely to infect those with whom you may share needles or have sex.

Today, Doorways provides housing and care for 1,000 households affected with HIV/AIDS each year, has an annual operating budget of $5 million, and has brought more $100 million of competitive housing dollars to Missouri. Just 25 years ago Doorways didn’t exist. The difference between then and now can predominately be traced to Lynne Cooper.

In the late 1980s many young men were dying well before their time. HIV, then just beginning to be understood, was taking lives, decimating families and engendering fear along a large swath of the U.S. population. St. Louis was hardly immune. Some in the local community were talking in terms of sin and retribution. Others heard a call of compassion to help the sick and the dying, while the vast majority were simply ignoring the issue.

Cooper, a nun, began to meet with a few concerned clergy and community leaders. In those early meetings, there were representatives from the Catholic Archdiocese, a local rabbi, and ministers from Episcopal, Lutheran, Methodist, Presbyterian and United Church of Christ traditions.

As the group began to discuss the outstanding need of people infected with  HIV, they came to recognize that stable and secure housing was essential. This early vision, that safe housing is a prerequisite for effective treatment of HIV, has since been born out through research. For those who are HIV positive, housing is health care.

In 1988, this group founded Doorways, an Interfaith AIDS Residence Program. They did so with four apartments. This small initiative of clergy and community leaders knew they needed dynamic leadership. In 1989 they asked Lynne to be the executive director. The board would change her title to president in 1996 and upon her retirement the board has made her, "president emeritus." But titles can never communicate all that her visionary commitment has meant to this organization or to the local community.

Today Doorways offers rent, mortgage and utility assistance to more than 700 households each month and apartments for 280 people, including 80 children. It provides residential care for 36 people too ill to live independently in Missouri's first residential care facility for those with AIDS. Its mission also includes programs for AIDS housing in outstate Missouri and Illinois and a "Jumpstart" for 20 single parents living with AIDS who receive help with rent, utilities, education, transportation, food and childcare.

Cooper retired from Doorways at the end of September. Tom and Carol Voss, supporters of the organization, hosted a party in honor of her career at the Ameren headquarters. Moving speeches were given by clients and staff. One of the most poignant moments of the evening was Evelyn Cohen’s description of those early derelict apartments, where Lynne was not only the administrator but the plumber.

As a local clergy person, I have known of Doorways for about four years and have been on the board for about a year and a half. In full disclosure I now consider Lynne Cooper a personal friend. But I expect that is true of the vast majority of people who have met her; she emanates a charisma that draws you in, a compassion you can’t help but take personally.

I saw this in great effect when at my first board meeting we spent a couple of hours poring over byzantine budget sheets and financial reports. It was all very dry. All the economic challenges of our day were there in spades.

As we came to the end of the afternoon, a couple of the most darling little girls you've ever seen, about 5 years old, both with pig tails and summer dresses, came up to the glass door of the conference. They smiled and waved. I waved back.

They weren't as interested in me as the cookies on the table in front of me. Lynne Cooper saw this and immediately took the platter out to them — to their evident appreciation, displayed in toothy grins. They lived in the housing complex. Their parents, poor and sick, where being housed, and these young lives were being saved, because of those facts, figures and budget sheets.

Cooper has been that rare leader who could drop everything at a moment’s notice for the all-important task of delivering a cookie, and who at the same time can get her head around unfathomable HUD residential requests and arcane governmental budget requirements.

That capacity of embracing the personal and corporate has made her a very effective manager. Obviously she didn’t build the organization by herself. She has been known has a very effective mentor to young leaders — some of whom now run other human service agencies.

Opal Jones is one such mentee, hired by Lynne several years ago. She told me that Cooper gave her the grace to make mistakes, but if something didn’t work out as expected; she expected that you would take responsibility.

“Cultivating leadership within the organization,” Opal said, “was very important to her.” In conversations with multiple Doorways staff, past and present, it seems Cooper imbibed the powerful advice of Pope Gregory on pastoral care: Like the Good Samaritan apply both wine (which stings and cleans) and oil (which comforts and soothes) to the wounds of those for whom you are caring.

Cooper’s leadership hasn’t gone without notice. She served on President Clinton’s Advisory Council on HIV/AIDS and has received numerous positive citations and awards. The most recent came on the evening of Sept. 22 when Cooper was awarded the “Individual Equality Award” by the Human Rights Campaign.

In her acceptance speech, Cooper referenced the Erik Erikson theory of development: Mature adults reach a stage of either “generativity or stagnation.” The former is marked by finding lasting meaning and purpose often by investing in the next generation.  It is Cooper’s contention that the LGBTQ movement has progressed to generativity. The idea is that the local community has created numerous programs and institutions that help engender health and happiness. These programs are staffed by the energy and dedication of many people in the gay community even though AIDS is no longer a “gay disease.”

Here is part of what Cooper said: “Having reached this adult stage of generativity, our movement has gotten over its narrow selves. We are now proudly Lesbian, Gay, Bi-sexual and Transgendered. Our tent is big; it is inclusive.

St. Louis Effort for AIDS is no longer the gay organization, it is the education organization. Food Outreach takes care of people with HIV and cancer regardless of their orientation. Doorways is pondering how housing can prevent HIV among all varieties of homeless young people. These agencies are no longer segments of a gay movement, they are leaders and teachers about how to deal with any disease, how to address poverty itself, and what every human being deserves in food, housing and knowledge to life a full life. We are no longer just taking care of ourselves. In our maturity as a movement, we are leading the way in this world to a better more empathetic humanity.”

I think she is right about this. If so, she is largely to blame.

Women of Gulu Welcome Lynne Back

Apwoyo: thank you! After all your supplies arrived 
safely in Gulu, every vehicle, even the ambulance, 
was enlisted to get the goodies over to the clinic!

A glorious day! Over 100 women walked from 

their villages to hear about the new maternity 

ward.  "this will not help us, we are too old. But 

it will help our daughters and grandchildren."

JoAnn and Sister Hellen told about the statistics on 
infant and mother mortality in Uganda.  The women 
listened with concern.

Father Cyprian promised the support of the parish.

...questions were asked and answered ....

When? How soon can our daughters be safe
giving birth?

Parish council members meet with us and
both their approval!

A late comer poles her way in on uneven crutches.

The Elders ask to have their picture taken 
with Lynne, pronounced, "Le-an."

An animated discussion results in my being given
an Acholi name, Aber, (pronounced ah-beh')
which means "Beautiful One"!

Fr Cyprian is pronounced an honorary woman,
to everyone's great delight, and the celebration
of a birthing center for the safety of the
mothers and babies is celebrated.

Lots of questions; good ideas about the resolution of
the land issue and the desire to get started!

Supplies arrive in Gulu!

St Mauritz Clinic staff accept thousands of $ in medicine and supplies from friends in The US. 

Donn and Buff meet Sister Hellen,In-Charge(her title)of St. Mauritz Clinic. Stern as she looks, she loved them!

Buff and Donn surviving in Africa!

Packing your gifts for the clinic!

This Thursday and Friday Susie, D-Ann and Rosie came over to pack all of the supplies and medicine donated for the clinic into 6 suitcases for Buff, Donn and me to take to JoAnn in Gulu. This included 10's of thousands of doses of adult and pediatric amoxicillin and all the items on the list except the plastic speculums (but we have an idea for where to get these). 

Please send us prayers and good karma so that none of the suitcases is over weight and the large amount of medication doesn't disturb customs officials along the way. (we have taken plenty of prescription meds before, and Donn is an MD, so Buff and I can always leave him for ransom!)

Today I went to the Bat/Bar Mitzvah for Sydney and Joseph Tischler! They did a great job, and former Doorways board member, Rabbi Howard Kaplanski, was in attendance. Sadly, I will miss party, but it is tomorrow at City Museum, and everyone in the entire world is invited. Hope you can make it!

Finally, yesterday was Mary Sue and Alison's annual anniversary and fireworks party. Everyone who was there is also invited to the Tischler party tomorrow at City Museum!

More to come on our trip to Gulu!

Fired Up and Ready to Go!

Yea! Yesterday I had my last chemo until after I go to Africa on July 8. I still have the moon face, some blemishes and a cough as a result of the medicine, but my hair is slowing growing out, and I am still relatively pain free. Thanks for all the meds and other items you have sent for JoAnn. We will be sure she and her patients get them!

Lynne's Virtual Vacation with Charlie Davis!

Lynne at the pool

Lynne playing golf

Good news and jubilee

In the photo above, you will see Rose and JoAnn working on Jo's jubilee finery! Jo is back in Africa now and the outfit awaits only the finishing touches.

I got good results on my CT scan. Dr Wang Gillam told Donn and me that the tumor is the same, the mets have changed little, the blood clot is slightly smaller and there is no change in the lung lesion.

The symptoms, especially the fatigue, are slightly increased.

Under the circumstances, it is exceptionally positive news.

Thanks for all who are praying for me, especially Becky, who was ASSIGNED to pray for me!

XO

Sister Jo's Wish List. Items Needed before July 4th

WISH LIST FOR RIGHT NOW – PLEASE CHECK THE EXPIRATION DATE FOR THE LONGEST PERIOD

• Plastic snack  bags -  500
• Gallon zip bags - 60
• White socks  most people are barefoot and have wounds on there feet – when I treat and dress it would. Help if I could put a sock over it – like a tube sock
• Sleeves of plastic measuring cups – great to give mother for child’s med    4 sleeves
• ASA 81mg  - I can use about 1,200 a month 
• Children’s multivitamins – I could use about 1,000 a month 
• Amoxicillin Suspenion  125mg/5ml – use about 40 a month
• Amoxicillin Susp. 250mg/5ml – use about 50 a month
• Decongestants for children and adults – I can always use
• Combo decongestant and antihistamines as well
• Over the counter Eye Drops – small bottles – I could use 10 a month
• Small tubes of  antifungal cream – I can always use 
• Small tubes of hydrocortisone cream – I can always use
• Benzocaine 20%  gel – I think it’s called Oralbase for mouth sores/pain

2011 Senior Olympics

Record setting arm curl in 2011 Senior Olympics!

No News Is Good News!

Sorry this blog has been silent!  I have been busy, and fortunately, have not had any challenges worth mentioning.  That's why I say no news is good news!


Health-wise I am doing pretty well.  There is still some neuropathy in my feet and sometimes hands  It is not painful, but I have lost my balance and landed on my ass trying to make a great big tee shot!  Yes, there is still golf...this week at Bellerive and Westwood!


A second drawback is the fatigue.  I do best on days that I get to take a 2-3 hour nap, and I am winded with relatively mild activity.  I still life weights three days a week and have been going other days to do cardio to increase my stamina.  The chemo schedule is still three Tuesdays on and one off.  The end of this month I will have a CT to see the status of the cancer.


So, overall, i feel like things are going really well.  I am not in pain, and I am not throwing up; that is good!

It was a hair-razing moment!

Shawn, I did finally cut my straggly hair over at Alison and Mary Sue's.  Pictures are included!  But, I am just at 1/2 inch...not shaved.  So, you are safe for now!


Jo is still keeping track of my medicine, because my memory is shot.  Sometimes I can come up with what I am trying to say within a few minutes.  Work stuff is easier to remember than personal stuff and names.  But at least I am usually taking the rights pill and the right shot at the right time.


I have been able to be at work and do work at home more than I expected I would, and that contributes to the fatigue.  We are taking over the Medicaid nursing in our program, and although my role is supportive, I have some of the history and relationships that contribute to a very complicated process for our staff.  My job partner, Joe, our Administrator, Kim, our new CFO, Steve, and our social workers, Joan and Chien, are all doing a great job!


The big news is that I am going to Africa! You know we have been working on a birthing center in Gulu (see www.maternityclinicgulu.com), and finally the land issue has been solved.  You can see a google earth photo of the site on the website.  JoAnn is going over next week for two months to push the selection of a builder, and I am going in July with two friends, Don and Buff, for 10 days.  We will all come home together in plenty of time for JoAnn's jubilee in August.  And that will be a great event. My friend, Rose, and I are dusting off our sewing skills to make her an Africa themed outfit for the ceremony.  Fingers are crossed!


During early April Cec came for my birthday and a couple of awards I was receiving.  One was the Doorways Edlin Award, and the other was the Civil Rights Enforcement Agency Award for Distinguished Service in Fair Housing.  It was great to have her here, and I think it was reassuring for both of us for her to see me upright and doing well!  She likes her new digs at Carondelet Center.  Her room looks out to the Getty and to the Pacific beyond.


Arch and Deb also came from Michigan to check up on me and we all stayed out at Rosie and Sue's for a couple of days.  Fun slumber party!


My great friend, Evelyn Cohen, and her son Andy of Bravo TV, were featured in the Parade Magazine Mothers' Day issue, and his new book, Most Talkative, is taking St. Louis and the media world by storm. It has been fun.  Buy the book!


Speaking of books, the best thing I have read recently is Jewball, about a professional Jewish basketball team in New York in the 30's. It is great!  I have also read Fifty Shades of Grey (interesting and disturbing), Defending Jacob, three by Kristen Hannah, Gilead-a Novel, Wading Home-A Novel of New Orleans, An Eve Duncan Collection by Iris Johansen, the Hunger Games Trilogy, Remarkable Creatures: A Novel, The Habit by Susan Morse, Crossed Dressed to Kill, The Orphan Master's Son, Little Bee, Down Town by Ferrol Sams (a friend of Jo's), the Guernsey Literary and Potato Peel Pie Society, Fat is the New Thirty: The Sweet Potato Queen...


And, we saw a great movie: The Best Exotic Marigold Hotel.


So there, that's all I can think of for now.  Thank you for all the love and prayers!


Lynne

Come, on down to AliSue's Kitchen Salon!

Good Friday!

Taking Betty and Cec to lunch

New Great Niece and Other Good News!

My niece, Sandi, and her husband, Kevin, have adopted Molly Rose McGill, who is the luckiest kid in the universe! You can tell from the photo that she knows it, too!

Also, I got my CT results today. My tumor and the metastases have shrunk since January 31, and I have no new metastasis! That means the Abraxane I am getting in chemo is working. I have some neuropathy in my feet and hands, and I have some two to three day long periods of complete exhaustion, but I am not sick, and I am not in pain. This is good!

Additionally, although I still have the blood clot, from the jugular through the superior vena cava and into the atrium of the heart, and the stent, it is all pretty stable, and I am able to go to the gym again! So I no longer have an excuse for being the only cancer patient on chemo who is gaining weight!

We also talked about other treatments,  the vaccine study and some protocols in LA and Texas, but for now we are staying with what is working (and not yet killing me!).

Thanks for all the love and support. Your good thoughts and prayers seem to be helping!

Love,
Lynne