Book Summary

Book Summary ** Our lives, after the diagnosis and subsequent treatment, of my husband for a brain tumor, clearly have taken a path less traveled. Yet our journey has and continues to be, a journey of hope, joy and of unyeilding commitment. We invite you into our lives, a view of our childhood, marriage, a marriage seperate from convention, yet strongly bound. Join us as we recall the last twenty-five years, twenty of which have been spent LIVING with a brain tumor. Come, witness our challenges and discover our triumphs as we reinvent our relationship, struggle to redefine marriage roles, communication styles, and reclaim intimacy after illness.

Monday, January 13, 2014

Happy 2014 - New Year, renewed focus


Just received an e-mail from a newly diagnosed brain tumor survivor which is a subtle but strong reminder that I need to update this blog.  When life happens and major changes occur my passion to help others and inspire hope seems to takes a back seat. Since last May lots has happened in our lives unrelated to the purpose of this blog but is it really unrelated?

In June an older brother died.  Bob was the father to 3 amazing children and had a devoted wife of 30+ years.  Living in Florida, away from family I did not realize all the medical issues Bob was dealing with on a day to day basis.  His mobility was hampered by both heart issues and severe back pain.  This was a man who ran a maintenance company with his sons and was out doing landscaping and home repairs even though he dealt with pain and weakness.  You could say he was stoic.  It was not until his memorial services and talking with his wife that I realized she too was a caregiver.  I found out we have more in common than I ever knew.

Back in May I mentioned that my Dad continues to have symptoms of Non-Hodgkin’s Lymphoma.  He visited a specialist in Boston who biopsied a stubborn spot on his ribs.  In August I got a phone call from his oncologist letting me know he was going to need chemo again for a new lymph node that was affected.  At that point I started the planning to once again return to NH to help him through another round of chemo.  Trying to manage from Florida gets stressful for him and I just needed to be there for him. 
The transition to NH was well orchestrated and had only a few obstacles.  Packing your personal possessions in a 5x5 storage unit and the remainder in the back of your equinox takes a skill that I have totally surpassed.  I actually like organizing, purging and packing.  There is a lot less junk in my life.  Ron likes this newly organized me and was 100% along for the journey.  He dealt with my frustration, planning and focus to be there for Dad.

Not many men would pack up and move their lives for the cold north so that a father-in-law can have a sense of assurance that he can make it through a round of chemo.  But Ron did and I think he had a good time doing it. 

Dad got through 7 treatments and really did great.  Many 85 year olds would not have tolerated what he did but be it being stoic or stubborn, he did it.  Are you seeing a pattern here, stoic runs in the family?  Ron included.  You just have to do it, is our motto.

The holidays were beautiful and valuable time was spent with family.  I have to mention that we stayed with my sister and brother-in-law while in NH.  They welcomed us into their lives for 2 + months and even included us in their Christmas stocking tradition.  Can’t tell you how that touched my heart.  It was a culmination of yet another journey that was more than I expected.
 

Then the New Year, back to a dose of brain tumor reality, Ron’s yearly MRI results.  Appointment to see his neurosurgeon fell on January 2, the beginning of a major New England snowstorm.  I had the great plan to pack and head back south.  The packing went smoothly, but the traveling was tough.  Determined to at least make it to Boston was the first step.  Got there in twice the time but we did it.  The appointment time was moved up to accommodate the weather.  Now hearing the results you reiterate in your head over and over.  “Film looks great, see you in a year.”  I had that little voice tell me a few times, symptoms don’t always show before MRI changes.  But my positive-self, won again.  We were heading south, all 1500 miles.  The storm cooperated and the travel gods were in my favor the entire way. 

As you can see it has been a year of putting the effects of his brain tumor in perspective.  Other major events occur and you adapt and notice the things that were major obstacles are now acclimated into our lives. 



With a New Year there comes a new focus to share hope and inspire others to do the same.  Happy 2014.  We don’t know what is on the journey ahead of us but we can make it our best.

Tuesday, May 14, 2013

Head to the Hill for Brain Tumor Awareness

A week ago today we were walking the hallways of  our nation's capitol as part of National Brain Tumor Society – Head to the Hill.  Actually it was the underground passageway to and from the Representative buildings to the capitol. 
My fellow Florida constituents, as we were called, met with Congressman Miller from district 1 (our district) and then we met with Ileana Ros-Lehtinen district 27.  Meeting in the Rayburn Room of the Capitol was a highlight. 

Both representatives appeared moved by our stories and listened intently to our asks for NIH funding and to vote for HR 1801.  I will include a link to this information.

 
This experience was after meeting with the Senate staffers for Marco Rubio and Bill Nelson.  Each of these staffers remembered Ron and I from last year.  Yes, my Mom was correct, people are going to remember you no matter where you go.   We had left behind a copy of our book and perhaps they remembered that also, when I handed them another copy.  They seemed supportive this year, more than last because of it being post-election and both want to get some work done.  Not shy at all I asked that they work together to get a bi-partisan bill introduced similar to HR1801.   Can’t hurt to ask. 
  
It was such an exciting few days.  Sunday we volunteered at the Race for Hope, DC.  We felt more comfortable with the logistics because we had attended last year, 2012.  This year we wanted to help out and volunteer in the survivor tent.  We handed out yellow balloons and monitored the traffic flow leaving the tent where David Cook did his meet and greet. 
The walk to the starting line was memorable and tears flowed.  We followed a wee little one walking with her parents and the contrast hit me.  Here I was with Ron a 21+ year survivor at 54 and this wee one just beginning her journey.
This entire event really hits home and is a reminder of how fortunate I am.  The many years, waiting for MRI results, the surgeries, the therapy, and the adaptation to life as we know it seem such a blur. But seeing newly diagnosed and the folks walking in memory of a loved one moves me to continue my advocacy.  I have chosen the path of sharing our story and speaking out in support of all those who can’t. 
 
We had a chance to meet a great group of folks from Arizona and they walked with Ron as I stayed behind to complete my volunteer duties.  Our new friends from Arizona have lost sons and husbands and have banded together to raise awareness.  This advocacy spirit is contagious.  We all have a common bond that is irreplaceable.
 
I have been told so many times that once you find folks who “get it” you are friends for life.  As I meet new folks the circle widens and together we can impact DC and be proud to stand together for government change.  Every person I know has been impacted by cancer in some way and it should be easy to understand our passion.   I believe there is something you can do to honor those who are fighting or have fought this battle.
 
We left Washington DC hoping our voices were heard and will be watching the news closely for those changes we asked for.   If you happen to find yourself asking what can you do?  Join me and make a change.  At minimum sign up to be an advocate for NBTS.  You’ll get an occasional e-mail with updates and request to contact congress.  Simple.  If you want to join us next year in DC, let me know and we can all Head to the Hill.

Tuesday, January 15, 2013

New caregiving perspective, sharing Hope with Dad

I am long overdue for a post.  Back in October while attending the NBTS summit I was distracted by the recent diagnosis of cancer in my Dad.  At that point I was on the roller coaster of emotions.  The trip to Boston allowed me to see him for a short time and give him a long overdue hug filled with hope.  My hope was that this new cancer would be treatable and that Dad would get some relief from his pain.  I returned to Florida with mix feelings and an overwhelming list of questions.  How can a 83 year old navigate this maze we call health care?  I have been the captain on our own ship for 21 years navigating some stormy seas with Ron.  How can I help Dad now that he clearly needs someone.  My siblings and his friend were doing their best, getting him through tests and doctor appts.  I would provide questions to ask, observations to make over the phone.  Not seeing him and assessing myself was so stressful. After a second report that he had doubled up on his meds did I know I needed to make the long drive to NH.  Knowing his pain was still not under control and that with chemotherapy starting, the regime would get more complicated I knew in my heart where I needed to be.  The details of where we would stay and the logistics of my work from home, well those details did not seem to stop us.  I have to admit I was counting on tons of hope.
Hope prevailed.  We have taken up residence where angels in our midst have shared their homes.  I have not missed a doctor appointment or chemo day for Dad.  Having his med list available and updated for each appointment seems to set his mind at ease.  Observing and assessing any new symptom to report to doctors is such an innate task to me and Dad is ever so grateful.  His gestures, sparkle in his eyes and repeated thank yous fill my heart with such contentment.  I know I am where I need to be.
But I am left wondering what do other folks do when navigating the maze?

Wednesday, October 17, 2012

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/

Thursday, August 23, 2012

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.

Thursday, May 31, 2012

Happy Birthday to my survivor

Happy Birthday to my survivor.

Tomorrow Ron celebrates his 54th 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.

Wednesday, May 23, 2012

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.