Tuesday, January 15, 2019

Open letter to all who have, had or knows someone with Inflammatory breast cancer.

Small vent warning, possible trigger alert...sorry, not sorry. for sharing a post I shared in the IBC support group that I run. 

I saw a comment tonight and it just haunts me. "why wasn't I told this...." Because it has been a running verse in my subconscious for over 11 yrs now. Why I started this group. Why I have done so many things surrounding IBC. So, first, if you were not given proper care...IT IS NOT YOUR FAULT. Your doctors are supposed to know, the hospital is supposed to have safe guards for standard of care for IBC but... the reality is this is a rare disease and rare diseases (and the people diagnosed with them) tend to fall thru the cracks. And sadly, this disease is brutal at best. So learn, and when you read, be sure it is about IBC. IBC is different and so is just about everything else involving care.
How can you learn when, so little is published? What about the fact that you might not be a scientist or have time to read if you are? Maybe some days you just want to be a person and not a patient/researcher/self-advocate/just tryingtobreathethatday? Or just be you? I know it is hard. This group is great, but I can see some don't get here until after dx or some missteps, some get here day of dx and don't have time/interest/whatever to read and learn. It is hard to remember that almost every single thing you read about breast cancer does NOT apply to IBC. So much of it does not apply to us. For example, the common risk factor for lymphedema in general form of breast cancer is quoted at "Less than 20 percent develop LE and if they develop it is in the 1st three years" So first off, for IBC the numbers are much much higher, we are only really starting to look at this seriously but I know researchers at MDA are saying maybe 60 +% ....... and the year out timeline? It does not apply to us. So that is to give a simple example. IBC is complex and has subtypes that make changes too. So, to get back to the beginning thoughts, "do one told me" Please learn. As you can. As you can, encourage others to learn. Ask questions. ASK, "does this (whatever it is) apply to inflammatory breast cancer?" That simple question alone can cover some serious ground. Also, since almost anything written for breast cancer does not include IBC, I have some suggestions.   Download the app.  Free on iTunes or Googleplay.  Search IBC Network. It is free.  Can’t download an app? It is all on line for people who can’t download.  https://www.theibcnetwork.org/faqs-ibc-app/#Treatment2  This just a few things to get you started. I can share more.    There are patient conferences that are IBC specific for patients held at Dana Farber, Duke, and MD Anderson annually (and are free) to help educate.  Also don’t forget the first ever CMD written for IBC is available for free at www.theibcnetwork.org/cme   IBC is rare and not taught in medical school or conferences.  So this is very groundbreaking and important.

I know our time of a “rare disease, so we don’t talk about it” is changing in the medical world but in the meanwhile, we can do what we can by learning, to help save us and the others to follow.  I know it can be better, why I am devoting my life to this cause.

Hope always but also hope based on education is good too!  Love you all.

Sunday, December 23, 2018

Ironing and Memories

I rarely iron anymore. I iron so little I don't even have a proper ironing board, but a little table top one.  I know in today's world ironing is a thing of the past, but I bought some pretty holiday napkins, and it seems, they should be ironed.

When I was pulling it all out to iron, a memory came to me that I had not thought of in maybe 50 or more years. When I was very young a neighbor lady paid me a quarter per basket to iron her daughter's fluffy ruffled dresses that were very popular for little girls at that time.  I was thrilled to do it.  To get paid for a chores in those days was not common.  Also, I loved the task. Those deeply wrinkled dresses looked fit for a princess when I was done with them and it gave me a sense of pride in my work.

One year at Christmas I saw a little brooch in a store, now long closed.  The store was named "Globe" and it was on Shepherd Drive. For those of you not in Houston in the 1960's it was like a Walmart.  We shopped there every Friday after payday and my mother would take her $20 in cash and do what magic she could with it for the week for a family of six.

The brooch to me was the most beautiful thing I had very seen.  It was lime green in the shape of a poodle.  It had little fake diamonds in the eyes and the gold tail was on a cord that moved.  I just knew my mom would love it.  So I made a plan.  And I ironed and ironed and ironed and hoped it would be there. I think it cost $2 and to me that was a fortune. I do think I slipped out of the grocery section once to show my mom this amazing find in the jewelry section and she laughed and said, "That is so expensive!"

But I keep on ironing.  Then one day I had enough (plus tax) and I again slipped away and it was still there.  Score.

I bought it for my mom for Christmas.  And I watched her face carefully as she opened it. The smile on her face was worth it all. She wore it, and if she ever thought it was cheap, or silly, or not as wonderful as I did, she never let on.

I have saved it, all these years.  I have so little of her things, that I have been afraid to wear it, for fear I would lose it. You see, that was our last Christmas. The next fall at only 24 yrs old she died in a car accident and Christmas was never the same.

I was inspired the other day by a dear friend who said, "Wear and use the special things" Not a new thought to me and one I actually live my life by, but not this brooch.  This was my last hold out.

So if you see me around town, wearing a lime green poodle brooch, with a gold tail that moves...You will know why, and we can smile and remember today, our collective special memories. .

Wednesday, October 3, 2018

October feelings

My feelings are on the run, slipping away from me, sliding through my fingers as I try to catch them. 

I know not to hold them too tightly... knowing that force only makes them have more power... so I try to hold them lightly, causally, cupped in my hand, hoping they will stay in that soft embrace.

What is it about October?  

Seems since I had cancer, people, so many people, ask me if my mother died of cancer.  

No, it was an accident.   She was young, only 24.  Then they ask how old I was.  Nine, I was nine.  They look at me, I can see them mentally counting on their fingers. 

So, begins my love hate relationship with October. 

I love October.

It is the month that made me a mother for the first time. <3

October was the month that took my mother.

There is so much joy, but also so much sadness.  I wish there was way for joy to eclipse sadness, making it small enough to fit back into my hand again.

I am looking forward to November. 

Friday, August 31, 2018

What I want to say

Everyone loves a happy survivor, happy endings..so sometimes it is so hard, so very hard not to put a "pretty pink spin" on the cancer message.  So just keeping it real yall. 

The message I want to share, August 31, 2 am in the morning

I write this post late at night as I can't sleep, thinking of a young woman I know who will most likely not live to see the morning. So, I sit in the darkness, wishing somehow this night could be frozen in time, so we could have her with us for a little longer.

I talk about IBC,
raise funds for research,
network education for the medical community,
run support groups around the world,
and lobby for clinical trials internationally,
not because I had IBC but because others have IBC.

Without funding for research for inflammatory breast cancer, we will continue to lose women (and men) to this disease. A heavy message you say to yourself, especially since I am known for being a woman of hope.

Yes, I hope.
And yes, I am grateful to be alive 11 years after a diagnosis of triple negative inflammatory breast cancer. But tonight, I wait and pray, and long for the day we all look forward to the dawn of a new day.

A new day without cancer.

Hope always,

Donate, please, we can make it better. I know it.

Monday, August 6, 2018


Coping...how do you cope on a hard day? 

I remember being asked that by a friend, who was living with stage 4 IBC.  She has passed away now but that memory drifted into my mind today. Today was a really hard day.  On days like this I used to go to a car wash. I figured out you can scream in a car wash and no one can hear you. I told her that. One day she shot me a picture from inside her car, she was in a wash and the windshield was all soapy. I made me laugh even thought was was a hard day for her, we had this inside understanding. I told her once I was so upset I had to wash my car three times back to back before I was done. 

Today I realized I washed my car, but this time I just cried. 

What do yall do?

Sunday, August 5, 2018

Snapshots from San Diego

I don't think there's any way I could begin to show the beauty of San Diego with my camera phone, so I will not even try.  

So my snapshots will be words. 

I went to San Diego to meet with and talk to the new head of the Scripps Cancer Center.  This will be a wonderful opportunity to help open an IBC center of excellent there.  

What I ended up doing is being nurtured and listening to a lot of people from all walks and all ages of life.  

A lot of listening:

To a much older mom, of her wishes for her daughter. 

A man deep in grief who just lost his wife, the love of his life, and now he is "mom and dad" and having to figure out life without his soul mate.   

Watching a father tell his young daughter, he hoped together they can make "this better".

Listening to local ladies talk about what they hope will make anyone's cancer experience easier. 

Being nurture:

To brainstorming with a mentor on how to grow the charity, and discussing topics like government compliance.  (the bane of my existence)

Being gifted time and care by two very different women, both living with ibc, who have shown me amazing and generous friendship.

Meeting with local women living with IBC. Hope lives in them. 

Being listened to by other who care about what I am doing  Hope lives in that for me. 

I've had a wonderful trip here and couldn't wait to get back to Texas to work on the plans to bring strong education and standard care to Scripps. But.... there is always a bit of a crash after a high like see what is coming to San Diego. I landed late at night in Houston and as happy as I was, I was feeling the post "high-let down" 

The next morning I went to church on Galveston Island and felt instantly connected again to my friends in San Diego as I looked at the beach.  Hope always, Terry

Monday, July 23, 2018

The Gift of a Child

My week started off with an unusual activity for me.   Bright and early I got to hang out with a friend’s daughter at MD Anderson for a few hours, so the mom could take her chemo treatment.  

So much of my days are filled with conference calls, government compliance reports, endless emails for …what seems like for the sake of emails….But my friend who flies in and out of the city for her treatment in the same day, wanted bring her daughter along.  MDA will not allow children on the chemo floor under 12, can’t be unattended and they have recently closed the childcare center. She didn’t know how to work this out.  Without really thinking about it, I told her, “Hey I will come up and hang with her!”  Then I laughed at myself. I am a busy person.  Whatever right?  Get a grip, give this a few hours.  I said to myself in my head.  AND I do love children, and 9-year olds are so much fun.  Not too cool yet and can still enjoy being a kid but big enough that it is easy to entertain them.

For over an hour, we rode up and down the escalators just because we could.  We rode it so many times people around us started to laugh.  We ran up and down halls (I know where some are so not so busy) playing soccer with a clear glitter filled light up ball I picked up in the gift shop.  We made up games to play and I showed her how to roll the ball up her arm and pop it off her elbow.  I loved she hadn’t seen that trick because she was schooling me big time in every game we played. 

My friend thanked me for watching her daughter, but the thanks needs to go to them.  The timing was so good for me.   Last weekend, I was at the funeral of a dear friend, taken quickly by TN IBC.  It was such a shock and I have cried for days.  However today, I was laughing, running around like a fool, with one eye on the lookout for security to kick us out or “secure” the ball until a real grown up showed up! 

Seems her mom wasn't the only person being helped that day.  The gift of time with a child was a gift to me.