Brenda Jones

Just diagnosed in October of 2008, Brenda Jones is a relative newcomer to breast cancer, but she's an old pro when it comes to realizing just how important friendship can be.

"I found the lump during a self exam, but I am sure I wouldn't have been nearly as aware had it not been for the fact that my friend Sandy Waldman had been diagnosed in October of 2007," says Brenda. "She was vigilant about getting me to have mammograms. When someone close to you is diagnosed, it really helps because you have the opportunity to see what they have gone through so you don't feel so alone when facing it yourself. We've been friends for 20 years, so I hope she realizes just how much she has done for me!

"When I found the lump," Brenda continues, "The first thing I did was panic. I can remember hearing a sort of whishing sound and feeling the blood drain from my face. I was so hot. I recall wanting to pass out, but I didn’t. I still wonder why I couldn't swoon like in the movies and have some hot young doctor attending to me!

"I was at the doctor's about two hours after I discovered the lump. Another friend is a nurse and I was meeting with her that day. I told her about the lump and she put a phone call in to a doctor friend who just happened to have a cancellation. They sent me to a breast surgeon who also had a cancellation that day – so the timing was amazing! When I got to the breast surgeon I was a nut case. The moment she walked in the door I just knew she was going to help me. I put complete faith in her (and I don't have a lot of faith in doctors!) She wasn't one of those, 'Oh you poor thing' or 'Shut up and get over it' doctors -- she was right in the middle, which was exactly what I needed.

"I asked her if she thought the lump was cancerous and she said she did. She also told me by the time they got me into surgery I would feel like it had taken forever, but the cancer had been in my body for quite some time, so I needed to trust that having it removed immediately was not an emergency. I was in surgery and having a lumpectomy within three weeks."

Brenda's cancer was determined to be a Stage II because of the size. It had not gone into her lymph nodes although the dye test showed a couple of abnormal cells, the sentinel node was clear and they were able to get clean margins. Although Brenda realized radiation was a given, she felt she wouldn't have to have chemo since the breast cancer apparently hadn't spread outside the breast.

"When I went to speak to the radiation oncologist," she shares, "I discovered they planned to give me chemo, so I told my oncologist I needed more proof before moving forward with chemo. I had nerve damage in my left arm which would have prevented me from using the chemo they wanted. I went for several opinions, and the final doctor fed all of my information into a database that determined how effective chemo would be for me. It indicated I would only benefit by 2 to 3%, which to my way of thinking wasn't worth the risks and side effects. Just to be on the safe side, in December of 2008 they removed 13 lymph nodes which all came back clean. I am now on Tamoxifen for the next five years."

When they removed Brenda's axillary nodes there was a complication involving her shoulder, so she wasn't able to start radiation until she was able to raise her arm. She had several weeks of physical therapy just to be able to move the arm again. The result, as she tells it, was, "By the time I was finally able to receive radiation in the middle of January, I was a full-fledged angry cancer patient. The radiation oncologist thought I was faking the arm situation so I wouldn't have to start my radiation, so she kept telling me the cancer was going to come back if I waited too long. She told me I had better stop playing around and get my arm moving because the longer I waited I was risking my life. Looking back, I wish I'd gone somewhere else!

"When I went for my mammogram in October of 2009, I had to go back to the radiation oncologist. At that point she told me she thought I made a mistake not having chemo. By the time I did my radiation, I was the patient from hell! I don't think you can mention Brenda Jones in that department without hearing crickets! I was a Tasmanian Devil. I mean it, when I enter people dive under their desks and their teeth start chattering. The funny thing is, I'm normally a very happy-go-lucky person. I'm the one who will make you laugh and turn your day into a good one. For me to be that angry was the complete opposite of who I am. There were times when I would rip people up one side and down the other – and enjoy it!

"I've talked to so many department heads basically saying, 'How dare you treat me this way!' They often told me they'd never had a complaint before, and my reply was – that's because people couldn't take the time! I actually became a mouth piece for other patients when they were afraid to speak up, I became their advocate." 

Brenda managed to turn her dismay, fear and anger into something very positive. "The hospital gowns were the last straw. I looked at the piles of scratchy thin gowns and knew there had to be a better way. I actually had to use two gowns and my coat just to stay warm. It made me look and feel like a victim. I sat there and that fast my brain was screaming I’m not doing this – I can't control anything else – but I'm not wearing this gown for the next seven weeks. I decided I was going to make my own hospital gown."

For Brenda this was one of those 'Aha' moments where, as she puts it, "I had an angel on my right shoulder and the devil on my left – and the devil was saying dummy, you don’t know how to sew! By the time I got home my friend had called to see how my day had gone. I told her about the hospital gown and she said I was in luck because she is a seamstress. That day I went out and bought a used sewing machine. I told her I wanted something warm, so she told me to buy flannel material. I took the material to her house and in three days I had a crash course in what I call sewing for dummies. She helped me come up with a pattern so we could make a prototype. The first time we finished one and I put it on, I said 'This feels like a nice warm hug.'

"The first time I wore it to radiation they told me to go change and I said I'm ready. I chose a pattern that was very bright, loud, and colorful. You need to wear something louder than cancer. I started to make a second one for myself, because I realized the sewing was giving me something to do. It helped to bring my anger down. It wasn't long before other patients were asking me about my gown. I made one for someone and then she told me about a terminal patient, so I began giving them out to others as well. By the time I was done with radiation, I had made ten gowns, which I was now calling Hug Wraps."

Brenda's Hug Wraps got her through her difficult time so it was a natural progression for her to want to make them available for other people dealing with the same sorts of issues. She has now sent Hug Wraps as far away as Canada, England, and Poland. She gets notes from patients telling her she’s given them back their dignity – which is what it was all about to start with. Brenda now feels this is project is her life's work – the reason she is here. She's hoping to find a company to mass produce them affordably. She is working on a website that she hopes will be up and running sometime in March (www.hugwraps.com). Until then, contact her by email if you'd like to know more about her product: hugwraps@verizon.net.

Although Brenda is single and doesn't have children, she owns a pet care center, and as a result has several animals of her own. It's not uncommon for her to spay or neuter strays when they show up at her house – and then add them to her menagerie. Perhaps her most "exotic" pets are her two turkeys, Bob and Fred.

Thankfully, the human "turkeys" who showed up in Brenda's life during her bout with breast cancer inspired her to create something wonderful for herself and for other people dealing with adversity.