Saturday, October 29, 2011

Navigating, Empowering -- Day 13 of 25 Memories -- A Countdown to Our 25th Anniversary Gala by Dorothy Gibbons

The call came about 2 o’clock in the afternoon. The American Cancer Society had referred the caller to us. We were the tenth call of her day, and she was at a pay phone with few quarters left.    
She began her story. 

“My name is Jerri and I’m 36 years old.” she said “I found a lump in my breast about 4 months ago.  I was hoping it would go away but it didn’t, so I finally got a mammogram at the diagnostic center downtown.  I heard that was what I needed to do, get a mammogram but it cost $125 so I had to wait till payday. Then they said I needed an ultrasound and that was another $250.  Then they said I needed to see a surgeon and so I did, and he said I had cancer and I would need surgery.  First he had to do a biopsy, and that was going to be another $1,000. Then when I had it done, it was for sure that I did have cancer. We don’t have any insurance.”

I remember thinking that in spite of having breast cancer, this woman was oddly calm.  Of course, she’d repeated this story ten times during the past couple of hours so maybe she was on automatic pilot.  Much later I learned of her terror.

She continued to chronicle the last few weeks.  “The surgeon said he would work with us for his fee, we could pay him out.  But, he also said I would have to go to the hospital to have a mastectomy, and I needed to have it done pretty quickly. 

“My husband is a mechanic and makes $9 an hour. We have about $350 every two weeks to work with, but our car is broken right now.  We don’t have much money.  I went to the hospital and talked to the people about making payments, or doing a payment plan.  They wanted a credit card, but we don’t have one.  Even though we don’t make much money, we always pay our own way. 

“I have a nine-year-old son and the last time I was in the hospital was when I had him. Anyway, the hospital said that we could pay it out but they needed $1250 as a down payment.  So we called our relatives and finally my husband’s uncle loaned us the money.  Then when I got to the hospital they wouldn’t let me have the surgery until they had another $750 down payment for the anesthesiology.  My husband was frantic and started making more calls. Finally, another relative put it on a credit card.”

By now, I was enthralled with this woman’s story.  I kept trying to figure out why she had called us; she had already had a mammogram, an ultrasound, and a biopsy. Those were the services I could have offered her.  Maybe she was looking for a support group or information on reconstruction.  I waited, listening to her words, the cantor was halting, and she had a childlike manner of speaking.

“So I had the mastectomy.  That was a week ago and today I went back to see the surgeon.  He said the cancer was real bad. Something about the pathology report.”

“Did you see that report?” I interrupted.

“Yes,” she said “I can read it to you.”

Before I could stop her, she had put the phone down and I heard her fumbling with papers.  The sounds of traffic filled the space, horns honking, the starting and stopping of engines.  When she returned, she immediately launched into reading the report, stumbling over some of the words, sounding them out.  She was right, the cancer was bad.

When she finished, I simply said ok, and asked, “Then what happened?”

She continued, “The surgeon said I would need to have chemotherapy and I needed it right away.  I thought the surgery was all I would need, I thought that was it.  No one ever said anything about chemotherapy.”  She paused. 

“Yes, Jerri,” I said filling up the silence, “chemotherapy sounds like the right course of treatment.”

“He arranged for me to go see an onconologist [sic]—is that what they are called?” she asked

“Oncologist” I responded.

“This oncologist,” she said the word perfectly, “His office was just down the hall from the surgeon’s office, so the surgeon called him to arrange for me to go right over.  The surgeon said I shouldn’t wait; I needed to go right then.”

I was growing uncomfortable now; the small knot forming in my stomach was sending out loud signals. Jerri had stopped talking again, I was afraid we had gotten cut off. Finally I heard a deep inhale, and she continued.

“I was in his office, the oncologist.  I had taken my chart with me and he was sitting behind his desk and looking over it.  He said, ’Yes this is very serious, and we have to start your chemotherapy immediately.’ I asked when. He said, ‘We’ll schedule the first treatment this Thursday and then you will need 6 to 9 more every three to four weeks.’

“How much is this going to cost?’ I asked him.  He said, ‘Cost?’  I said, ‘Yes, I will have to find the money because we don’t have insurance.’  He said it was very expensive, thousands of dollars.

Now Jerri’s voice broke.  I waited.

“Then he handed my chart back to me and said, ‘I can’t help you.’”  Her voice cracked again. 

Another pause, finally in my softest voice I asked. “He handed it back to you?” 

She said yes.  She didn’t remember what else was said, she was so upset.  She just remembered thanking him and taking her chart. She left the office, walked outside, found the nearest pay phone and looked up hospitals listed in the yellow pages and started calling them. 

“I was lucky there was a book here in the phone booth,” she said. 

Lucky? I thought. 

She continued, “I must have called four or five hospitals when finally someone said to call Reach to Recovery at the American Cancer Society and they were the ones that said to call The Rose.”

My mind was reeling.  I knew there had to be a way to help her but first things first.

“Jerri, let’s start over.  Do you have a phone at home?”

“We used to, but it’s been disconnected.”

“And your surgery was a week ago?”

“Yes, I still have the drains in.”

I almost lost it then.  It was hot outside.  Houston can be hot any time of year but this week in November was miserably hot. I imagined the scene at the other end of the phone line. A young woman standing at a pay phone, fighting off the heat and the fumes from the downtown traffic; feeding one coin after another into a pay phone; hoping against hope to find help, with her drains still in place.

“Jerri you are talking to Dorothy, don’t forget this name. Give me the phone number on that pay phone please.”

There was a pause and she said. “I don’t see one. It’s not on here.”

“Ok, then is your husband with you.”

“No I took the bus; he had to work today. He’s already missed too much on account of me and we need the money. I lost my job when I got sick; it was only a part time job but it was something. They didn’t need me anymore. We don’t have much money now.”

“Can you give me his work phone number?”

“I don’t know it; I never call him there."

“Where does he work?”

I could tell she was uncomfortable, she hesitated, maybe worried I would call him and he’d lose his job, so I changed my approach.

“Jerri, we will find you help but let me explain some things. We don’t do chemotherapy here at The Rose, but I will find someone who does and who can help you.”

At least I hope I will, I said silently to myself. 

“I want to be sure I have a way to reach you, just in case something happens and we get cut off during this phone call.”

She understood and gave me the name of his work.

“Are you feeling well enough to stay on the line for a little while?” I asked.

She said, “Yes, I just have to be home when my son gets out of school, around four o’clock.”

It was so incredible, I almost laughed.  Her priorities were absolutely clear. She had to be home by four.

I, on the other hand, had started to panic, mentally weighing the best approach and whom to call to try to get her into the public health system.  Most of all, I knew I couldn’t let her hang up because I had such a bad feeling that I’d never find her again.

So I said, “No matter what Jerri, stay on this line.  I’m going to put you on hold and make some calls.  Do not hang up. Promise me that.”

She said okay, then she asked me, “Who are you again?”

I said “Dorothy Weston.”

She asked, “I mean what do you do there? I could call you back.  I’ve already taken up so much of your time.  Are you sure it’s ok for you to keep talking to me?”

I said, “It’s ok, Jerri. I’m the boss.” 

That was the moment she broke down and cried.  For the next ten minutes, she cried, big sobs pouring out between her saying “I’m sorry.” She cried. I talked, telling her it would be all right. She cried some more. I kept talking. 

By now, I had caught the attention of one of the employees who was passing by my office, frantically I motioned for her to come into the room. While reassuring Jerri, I had found the numbers needed from my Rolodex so I scribbled notes to my employee asking her to start making the phone calls. 

I glanced at my watch -- 3:15 p.m. I had been on the phone for over an hour.  It was a Friday afternoon so finding someone still in their office would be a trick.

My employee returned, indicating some success.

I said to Jerri.  “I want you to talk with one of my employees now, while I talk to a couple of people.”

Within the next hour, we made a dozen phone calls. First, calls to oncologists finding no help, then calls to the county hospital district and frustrating minutes of being kept on hold with the eligibility office. Then a call to the clinic assigned to her zip code. The public health folks wanted her to come in for a consultation and to have an initial screening. 

“She already has breast cancer!” I almost screamed into the telephone.  I gave up and went another way.

Finally, I reached Dr. Nancy Neff, at Ben Taub and she made the calls. Between about six people and as many phone calls, everything was set up. Jerri’s application for public health would be expedited and her chemotherapy started. 

Initially, Jerri had difficulty understanding what we were doing.  She had never accepted charity before, had always paid her own way. She didn’t understand that she could qualify for public health. I was asking a lot of questions about her finances and demographics and work history so she could be assigned to the right referring clinic, and she was suspicious of the whole process.

Finally, I explained that her doctor would take the drains out on Wednesday morning; her appointment at the clinic would be that afternoon.  We had reached him and explained the situation.  He hadn’t been told about the outcome of Jerri’s visit with the oncologist. 

Of course, Jerri had a few other worries as well, such as having grocery money for the week.  They had used every penny from their savings for the diagnostic work-up and biopsy. My heart dropped when she told me that, because we could have helped her there – had she known about us.

Our employees went together and provided Jerri’s family with Thanksgiving dinner.  She started her chemotherapy. We received a couple of letters from her, but the last one sounded as if more hard times had hit that family. Jerri’s plight haunted us. 

Hers was the example we used in the introduction of an ambitious grant proposal to the Episcopal Health Charities. We needed a better way the proposal explained. The community needed The Rose to do more than provide mammograms and biopsies. What we needed was a physician network and a staff assigned to navigate women through the system. The Charities agreed and their grant launched the program that is now modeled throughout the nation. 

The Rose's award-winning Empower Her® Sponsorship Program has been nationally recognized as a model for serving the uninsured, and, last year, provided sponsored screening and diagnostic services to more than 8,500 women. The program includes Patient Navigators and the Physicians Network, who, since beginning in 1999, have navigated almost 2,000 uninsured women with breast cancer through the healthcare maze of treatment options. Last year, alone, the Physicians Network donated over $7 million in services to patients of The Rose thereby ensuring that desperate calls like Jerri’s always have an answer.

Even though her story was the impetus for one of our most successful programs, Jerri didn’t know what she inspired. The lost of contact with her worried me. And then . . .

On 12-15-2003, I received this note, handwritten in a gold colored ink on a small Christmas card with no return address:

“I would just like to say Thank You so very, very much – it has been 5 years now, but I don’t know if it would have been – if not for you all! May God Bless you All!"
Merry Christmas from
Jerri, Paul & Steven 


This memory is one of 25 short stories written by Dorothy Gibbons, the Co-founder and CEO of The Rose, a nonprofit breast cancer organization. She and Dr. Dixie Melillo received the 501C3 documents for The Rose in 1986. A memory will be shared daily, culminating with number 25 on the day The Rose celebrates its 25th anniversary November 10.

© 2011 Dorothy Gibbons. All rights reserved.

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