National Brain Tumor Society Summit 2012 and Brain Tumor Walk

A few months ago we were asked if we would come to Boston for training as an state lead advocates for NBTS.  This would be followed by the NBTS Summit 2012 and the Boston Brain Tumor Walk.  We had done training in May for Head to the Hill in DC and this state lead advocacy training would be for 12 participants as part as a more formal position.  I was honored to be asked so certainly said yes.  Boston is close to family and friends and when we made flight plans extended our trip to take in a visit. 

We arrived on Thursday and found our way to the Omni Parker House Hotel in the heart of Boston.  Training started at 3pm and outlined what our role as policy advocates would be over the next 2 years.  Our first task is to recruit others to sign up to be an advocate and take action by submitting e-mails to congress.  The agreed goal is to find 1000 advocates by the end of the year.  The eager group started formulating plans to contact others to reach this milestone of 10,000 in total. 

To reach out to others and ask for this small favor seemed simple enough. We proceeded to write out our 1 minute elevator speech.  My passion for this cause made me jump at the chance to practice this in front of our small group.  Taking that opportunity ensured to me I have the confidence to do this.  As Ron's spouse, caregiver, friend, advocate, and companion I am his voice and need to speak to others on behalf of him and all the others who can't.  I feel guilty that I waited so long to get involved when here are others who have become advocates in memory of their son's, daughters, mothers and fathers.  A few of the members are survivors.  We as a group will recruit other advocates like you who share in our passion.  The summit portion started with the annual dinner while the community awards and research grants recipients were recognized.  Again these folks made my contributions pale in comparison to their fundraising, awareness efforts and dedication to the NBTS.  The education sessions on Friday outlined the research efforts that have been accomplished and the ambitious efforts yet to be coordinated.  Having this knowledge and motivation carried me through to Saturday as we found our way to south Boston for the Brain Tumor Walk. 

survivors

 

We were surrounded by 3000 of the most generous folks.  Many walk in memory of loved ones holding signs or wearing t-shirts with pitures or their team logo.  As I stood there in awe I was struck by the numbers of people obviously having the passion I have for raising awareness.  What a better group than this to start my efforts of recruiting advocates.  I grabbed a handful of cards and started my mission of getting folks to sign up to be advocates and having their voices and stories heard by congress.  The response was enthusiastic and passionate.  I provided my elevator speech over and over again but with each group I approach I took a few minutes to hear why the group was walking.  The stories were both heartbreaking and heartwarming.  I am forever humbled and this experience will help me maintain my motivation.
Can I ask each of you to take 2 minutes and sign up to be an advocate. Click on this link, complete your info and then click the button "Take Action Now" and it will step you through the process of sending an e-mail to your members of congress. Please join me and have your voices heard. Together we will get the support we need to fight brain tumors.
http://www.braintumor.org/get-involved/advocacy-public-policy/

21 years and counting, may our Hope never fade

 

It is officially 21 years since Ron’s initial biopsy for his brain tumor.  It was 21 years ago that I insisted that he come home with me to do home rehabilitation.  He had become paralyzed on the right side leaving him with minimal function of his arm and leg.  He needed a quad cane to walk and his speech was slow and he had trouble with nouns.  Our life as we knew it had been changed.  Prognosis, all we knew was that it was a "good tumor", a low grade astrocytoma.  Of course as a nurse I looked up the stats and it was looking like 2-3 years.  They would not treat the tumor at this point because of the damage they did just taking the biopsy.  So we headed home.  I had just started a job in home health/hospice and he was going to get home therapy vs a rehab facility.  He worked hard and was able to regain most all function.

Jump ahead to the end of 1992 and he was able to get radiation – fractioned stereotactic radiotherapy.

Then in 1998 he started losing function again on his right side and he was labeled aphasic, lost the ability to name things (nouns).  Despite surgery in 1996, 1998, 2000, 2007, 2010 he has never regained this function or ability to speak.

So how do I feel 21 years later?  Oh so grateful that he is here with me.  Amazed every day at what he accomplishes despite his challenges.  Determined to share our Hope and inspiration with others.

I was reminded last evening that how you approach life is a choice.  Making the best of what you have and finding the moments of bliss is a habit you work on every day.  I have read recently that many folks have given up on Hope and that breaks my heart. 

What is Hope?  Hope to me is very personal.  I did not hope that his tumor would go away, rather I had hope that we would have the strength to face the next challenge.  I would have hope that each day I would see a smile on his face.  I do not hope that we can have a conversation like other married couples.  Instead I hope that I have the patience to understand his hand gestures and can figure out what  he is concerned with or what he needs.  I do not hope any more that he will gain function of his right hand but I do hope that he can continue to conquer everything he tries with his left.

Many, many, too many actually have recently gained their wings in our brain cancer community.  My Hope is that the family of these folks can find comfort in their memories and have taken the time to appreciate each and every day.  That they did say all the things they needed to say before the long goodbye.  I hope that they take on the charge to raise brain cancer awareness in memory of their courageous loved ones.  To all who continue to fight the battle, learn from me and never ever give up hope, whatever you may hope for.

Happy Birthday to my survivor

Happy Birthday to my survivor.

Tomorrow Ron celebrates his 54^th birthday

He has spent the past years feeling grateful and not taking any of them for granted.  It is one of those realities you discover when you are faced with a life threatening illness like a brain tumor.  If fact he is thankful for each day he wakes up,  I am also.   One lesson my Mom taught me is to never go to bed mad.  I want to teach others to also wake up grateful.  Grateful for each morning. 

Life has not been easy for us  but we have learned some valuable lessons living through our adversity.

We celebrate all the good things we have and really take time to acknowledge more birthdays.  We have found that the best way to nourish our souls is to visit the beach.  If just for a few moments the stress is washed out with the waves and we surround ourselves with the beauty and excitement of finding a sand dollar or spotting a dolphin in the surf.

Staying in the moment.  When I find that I am stressing over his next MRI or doctor’s appointment I try not to look too far in the future.  What do I have control over in the moment, my attitude.  When I get pre-occupied with the worries I stop and take inventory of my plans and  concentrate on the things in life I have control over.

When those plans you make get altered reach out for support.  Talk through your alternatives and know that if you would be there for others in time of need they are going to be willing to help with open arms.  I have found support from folks that don’t even realize that their kindness mattered.

Trust that you can make it and know that you have everything you need in your heart and soul to survive.

Keep dreams alive.  You cannot achieve your dreams if you have none.  Write them down make a plan.  I really don’t think Ron would be here today if he had stopped dreaming.

Let go of the past mistakes and failures.  Learn from them.  Forgive others who have hurt you. 

Celebrate. Celebrate. Celebrate.  Life is too precious to keep to yourself, find someone to share your love with.

Neurology Appointment Today after 20+ years with a brain tumor life gets routine?

Life gets pretty routine but it hits you when you have to face reality.  Don't get me wrong this was a good, follow-up appt but I tend to get into "the routine" and don't recognize how fortunate or unfortunate we are.  I read every day of more and more people finding out they have a brain tumor.  I read even more stories of folks needing hospice care because their options have diminished. 
Thank goodness my rountine reality is different.  I am so grateful but sometimes my reality stinks and I feel sad for what his brain tumor has taken from him.
I look at Ron as he is trying to tell the nurse how much he weighs.  He says 111, she doesn't understand but I without thinking take out a piece of paper to have him write it down.  A few seconds earlier had told her he is aphasic and can't tell her how tall he is, that I knew.  I saw he had weighed himself the evening before at the Y and would know, so got him to commuinicate the best way I know how.
This appt was a follow-up to see how he made out with his recent stint with Physical Therapy and Speech Therapy.  And most important I got to report he has had no falls and no seizures. 
Well the physical therapy, mostly done in the pool did great things for his balance and endurance.  He is able to go out for walks and do some weight lifting with me at the Y.  Each time we go he seems to be able to do more weight and is surprised by what his paralyzed arm is able to do.  Most of the weight is lifted by his left but he puts the right arm through the motions, with a little help from me.

Speech Therapy confirmed that he could use an app on his ipad that would help in some areas of communication.  With the customized app he can choose pictures of what we need at the grocery store and what he wants to have for meals during the week.  This is huge help to me.  We have yet to perfect it so that he can use it with friends and strangers as part of a conversation.  Lots more work and time is needed for this.  I get stuck in my routine and need the motivation to do these things.

We got the ok to tweek his seizure meds to twice a day rather than 3 times a day.  This will make his life a little more normal to not to have to worry about the 2 pm dose.

I know the effects from his brain tumor will never go away and life for me although different than most does get routine but a doctor visit like this makes me do a reality check. 

Race for Hope and Head to the Hill - DC 2012

We are back from one amazing trip to DC. I had some pretty special memorable moments I wanted to share.
Meeting fellow BCF admin's in person and giving them a hug of thanks for all they do Shannon, Christianne, Erica, Jennifer.
Walking with Ron to the starting line of the Race for Hope DC. Survivors wore yellow T-shirts and held yellow balloons. Seeing yellow made me cry tears of gratitude.
Reading the race tags of fellow walkers, many walking in memory of, how much love to do this, year after year.
Walking down the middle of Pennsylvania Ave with the Capital in the distance, being so grateful that Ron was able to keep up a great pace and had me racing to catch up at many points.
Standing on the steps of the capital for our group picture with fellow lobbyist for Head to the Hill.
Sharing our passion for funding to NIH and raising awareness for drug parity with those congress members, was affirming to the value of the Nationaly Brain Tumor Society.
Thanks to each of you for keeping my passion to share Hope.

Living year 20 with a Brain Tumor, the journey continues.

Ron had a follow-up neurology appt today here in FL. Went in with my list of things he needs and came out with the items checked off. One of the items was a speech therapy eval to help me set up his new I-pad. A friend loaned one to us and I have now lost him in it. Need help knowing which speech app to download and set up to assist with his aphasia. Talked to the neurologist about his walking, really no change but I think it could be better - he ordered PT. Even after all this time I am not satisfied with the status quo and want to improve his life. It just takes some motivation from this group for me to make the phone calls and get us moving. Thanks to each of you for sharing your stories of struggles, sadness and successes. Each has helped me maintain my perspective, grattitude and love.