Monday, November 4, 2013

PATIENT STORY: Nancy Newsom Ridgway

Nancy Newsom Ridgway

This is the second post in our series of interviews with those affected by sarcoma. You can also read about leiomyosarcoma survivor Liselle Reppert.

If you're interested in participating in this series, please contact us to get the ball rolling.

Nancy Newsom Ridgway is a Texan and she does what it takes to get the job done.  She's a gentlewoman who never has an unkind word to say, but no one would ever call her timid. Nancy is strong and passionate about  family and God.  She is a wife, niece, parent, grandparent, great-grandparent - and she's a survivor. 

This is her story.

What is your sarcoma diagnosis?
Malignant Fibrous Histiocytoma (MFH), but they have changed the name of that type to Undifferentiated Phleomorphic Sarcoma.

In what year were you first diagnosed?
April 30, 2009….unforgettable!

Have you had surgery, chemotherapy, radiation treatments, something else?
I had surgery (resection and excisional biopsy) to remove a left quadriceps mass / medial margin left quad mass in the muscle.

They did the biopsy directly before the surgery and then proceeded with the surgery, and the surgeon got clear margins around the mass. They immediately took me for a chest x-ray after surgery to see if it had metastasized to the lungs (it had not).

I followed up surgery with 6 weeks of radiation every day. I had a wonderful doctor for my radiation, and I didn’t get much of a burn until the last week. I put pure aloe (no alcohol) on and it really helped. They gave me a lotion to use as well.

Had you heard of sarcoma before you were diagnosed?
When I was going in for the MRI with the lump on my thigh, I started researching and knew right away that sarcoma might be a possibility. Until then, I had never heard of it.

After having the first MRI and then getting the results to take to my oncologist, I looked up that photo on my MRI and compared it to one online of a sarcoma – they looked the same. I was sorry I looked it up!

What is your prognosis?
I am now 4.5 years out from my sarcoma, and so far all tests have been NED (no evidence of disease). They don’t really say remission now…it is NED.

I feel good about it, and at the same time I don’t take it for granted…and I know that it could come back. I have a really strong faith and if it does come back, God will be right there with me. I am thinking positively and if I make it past the five year mark, I understand that will be really good…not a guarantee, but really good.

I am very hopeful…and I pray a lot.

How old are you?
I am 63 years young!

Tell us a little about you.
My husband and I have lived in Texas most of our lives. We went to the same high school and have been married for 46 years. He has been my biggest support through cancer, although my family and friends have certainly all been there for me too.

We have two daughters, one is a nurse and the other teaches medical coding and works for a bunch of doctors. I have four grandchildren and two GREAT grandchildren. They are all very precious and special. My family and friends are my biggest blessings!

I also have two poodles who rule the roost here. I spend a lot of days letting dogs in and letting dogs out. I have a cat we adopted named “Bubba” (who has an identity crisis and thinks he‘s a poodle).

I was a florist in Fort Worth for many years at one of the largest florists in the USA at that time. Many holidays we would work into the night or all night long so Mothers and sweethearts all over the world could get their flowers on time. I chose to quit that job to take care of both of our Moms who needed help as they got older.

What is your biggest piece of advice for someone who is newly diagnosed with sarcoma?
Get a second opinion and go to a sarcoma specialist…maybe a third opinion if you aren‘t satisfied. I don’t regret getting all the opinions I could get because it helped me make a more informed decision. You have to be your own advocate.

Keep track of every test and everything in a notebook!

It's probably best not to believe everything you read on the internet about sarcomas! 

Always keep a sense of humor…you will feel better all around for it and you can always find something humorous.

"The surgeon herself even said it was probably a lipoma..."

Everyone has a diagnosis story. What is yours?
 I had this place in my thigh for months before it was diagnosed. It hurt. My rheumatologist looked at it before it was growing so large and he told me to put heat on it, and then my primary care physician thought it was probably a lipoma…I mean that was the obvious thing to think I suppose, and I don’t hold it against either of them for not knowing what it was!

The surgeon herself even said it was probably a lipoma and possibly a sarcoma. The sarcoma was most unlikely of the two…I get that. After several months of this, I had an MRI, then I saw the orthopedic oncologist and had surgery which showed it definitely was sarcoma.

Following the first MRI/surgery on my thigh, my oncologist thought I should have chemo and then radiation, and referred me to MD Anderson for a second opinion.

My surgeon, who was an orthopedic oncologist, said she would do radiation only, because of my already low white cells, which was (and still is) an ongoing problem. When I went to MD Anderson the first orthopedic oncologist I talked with told me he agreed with the radiation only, but when he talked with other doctors, they decided chemotherapy followed by radiation would be the better choice.

I asked them about the radiation-only option and they said that was my decision, but that without chemo the sarcoma would probably come back with a vengeance within 5 years. This was a very tough decision for me, and I didn’t want to do the wrong thing of course, or go against anyone’s best plan for me. I knew I was taking a chance, but I did have two oncologists and a radiologist all of whom thought 6 weeks of radiation would be enough for my treatment, so that is what I chose to have. 

My decision was right for me. I mean the final decision is ultimately up to us, and I had so many varying opinions, it was extremely confusing to me at that time. These are our bodies, and our choice…and heck yes, I wanted it not to come back….and my gut instinct was to go with the radiation only and a large part of the reason was because of my already low white count...and with chemo it would have plummeted.

My radiologist agreed with my choice, and said he thought I made a wise decision.

My husband and I had moved from the city to the country to retire. Six months after we got to the Texas countryside, I was diagnosed. I drove myself into town for radiation every day -an hour there and another hour home for those 6 long weeks.

How long did you wait to tell family/friends about your diagnosis?
I had part of my family in the waiting room when I had my surgery, so I didn’t have to tell them, the surgeon told my husband and some others, as I was waking up from anesthesia…and as in any family word spread pretty quickly I suppose.

How are you feeling today?
Today I am feeling great and I am 4.5 years out this month! I am very thankful to be alive and every morning when I wake up I am grateful.

My thigh still hurts a little bit to the touch. I still have tests regularly…having them this week and next as well. I hopefully will be able to tell MD Anderson things are still going well when I send back their questionnaire. They keep track of all of their Sarcoma patients.

I do have “survivors remorse” and I feel great remorse for friends who haven’t had it so good, it really grieves me that some of my fellow sarcoma patients keep having to fight it every single day. I really do care about all my sarcoma family and I keep them in my heart and my prayers.
"I have met so many wonderful, courageous, and caring people..."

Sarcoma diagnosis is a terrible thing, of course, but have there been any hidden blessings?
I have met so many wonderful, courageous, and caring people through having this cancer…and it is strange that blessings can come from being ill, but they clearly have.

I don’t know what I would do without my friends at Sarcoma Alliance.  They are funny and insightful and inspiring, not to mention courageous.

We all share this common bond…not the kind of bond we would have asked for, for sure, but there it is…and we all make the very best we can of it.

What keeps you inspired / motivated?
I love people and I like to do things for other people. Sometimes I go on overload…but I have always found I get back way more than I put in.

I totally love my volunteer job at Sarcoma Alliance and everyone involved is so sweet and kind. I have seen members go to the ends of the earth to get information when a friend needs it, and in helping someone new learn more about the things they need to know.

Music always inspires me as well…my family is musical and many of us play instruments. I love, love, love, to all get together to have music time. My brother used to play the keyboard professionally. My Aunt was a strings/orchestra teacher and she plays the violin beautifully, and even I dabble on the keyboard...and we all sing, some much better than others.

Nature truly inspires me too…always changing and always something new each day. I love animals and birds! I enjoy photography and all kinds of arts and crafts and painting. I love to travel… and have been to many foreign countries and I love bed and breakfasts because you can really get to know something about the people/cultures that way.

What is your favorite (clean) joke?
This teacher asked some children in a classroom to draw something really special to them…anything they wanted to. The teacher was going around the room and checking each one out and when she asked this little girl what she drew, the little girl said, “God”. The teacher said, “No one knows what God looks like“, and the little girl replied, “Well, they do now!”

If we came to your house for dinner, what would we have?
No telling…depends if I am in a hurry or I have a lot of time, if I am on my diet or if I am slacking!

I love to cook…and it would probably be Mexican food. My family loves my chicken enchiladas with sour cream sauce on them, or fajitas, beans, Mexican rice, and homemade guacamole with fresh cilantro in it. 

Nancy had her most recent MRI and CT scans after we'd completed the interview you just read. She told me the news was, "good and bad."  The lung CT showed some changes and her oncologist suggested another look in January. Nancy will be sending the results off to MD Anderson for another opinion.  Here's what she had to say about it, "...that's sarcoma for have to stay on your toes with it and I am hopeful this is not sarcoma...but that being said, as a sarcoma patient, we have to be vigilant."

 Keep in mind that Nancy's story is just that - Nancy's story and experiences in her own words. The viewpoints expressed here do not necessarily represent those of Sarcoma Alliance and should not be taken as medical advice, though we fully endorse seeing sarcoma specialists and getting second opinions.


Anonymous said...

Very inspiring

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