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.

Merry Christmas and Happy 25th to us

December 20 1986, we said our vows and meant every word.  In sickness and health were words back then but in our life together they are words we have lived by every day.  As we traveled through the White Mountains on Tuesday we shared our memories of those wonderful blissful days.  Spent many hours in the car when we first met so we could talk and share our dreams.  A trip up to Glen, NH for a Red Parker Pub meal was "our place" to celebrate many events.  We returned there after spending a beautiful day driving through those same mountains.  Those mountains have not changed much but we have.  Our love has grown, some of our dreams were realized but most important we made it to this milestone together.  Over the past 25 years we have witnessed the death of love ones and have watched our familes grow with lots of neices and nephews.
When Ron was diagnosed with a brain tumor 20 years ago I honestly never thought we would make it to 25 together.  But here we are still loving each other and dreaming of the next 25. 
So on this Christmas I want to wish you peace and joy.  May you honor those who are no longer able to share this holiday season with you and find hope in your heart that 2012 will bring you blessings.

Recent trip to Boston for MRI

It's our turn for PMS - pre-MRI syndrome. Ron had an MRI 12/1 and a follow-up Dr J appt. I have not felt comfortable with the way he is walking, dragging his affected leg. I had been making excuses for the past 2 months and really just need answers. Reality stinks but it is the only way to deal with this. Facing the fear that he may need surgery, again. At minimum perhaps be able to drain some cyst fluid. Or maybe he needs some regular exercise, which he has been without since we have been in NH. You think after 20 years of this, I would cope better. Hoping for the best outcome and answers.

OK here is a synopsis of the day. Stayed at Michele's in Jamaica Plains, cozy and quick non stress drive to hospital. MRI on time, Ron napped during procedure. Dropped of copy of book at patient resource center. Off to donate platelets, parking validated and former Patriot there doing PR for the Kraft Donor Center. Gave donor center copy of Hope along with the communications folks doing the PR.  Determined to share with everyone.   Also provided one to the gift shop in hopes they will sell them there.
Met with Dr J and all is stable. Thought Ron's idea of an ankle brace is a good idea to help him walk better.  

We have been told for 20 years that Ron has a gr ii-iii astrocytoma. Yesterday, better news, they gave us a report that it is a glial neoplasm with ganglian cells. Huh? Categrized as a low grade, pretty rare and typically seen in children. ...Dr J has seen only 11 folks with this type of tumor, only 1 of the 11 had it progress to higher stage. The location and the radiation has caused his deficits. The cysts that he and has had surgery for come from both the tumor and or the weakened brain blood vessels and tissue.
I have to thank BCF for the encouragement to get definitive answers for the questions you helped me formulate on this visit. Don't think I have not asked before but I needed answers from this new surgeon who had done surgery last year.

Thanksgiving

As a way to say thanks to all, I have dropped the price of the book to 14.99 for this weekend.  I encourage you to order a copy for yourself or if you have your own, a copy to share with others. 

Walking side by side, for life, raising brain tumor awareness

Why we walk, why I walk next to my husband and his brain tumor. Dec 20 will mark our 25th wedding anniversary and on that day I let him and the world know that I would stand by him for life. Richer or poor, sickness and in health. Our marriage was bound in love at that moment and that love has seen us through many happy moments, lifechanging moments and struggles. But yet we continue to walk together. 20 years ago we faced the diagnosis of an astrocytoma together. Although it was considered a "good tumor" it altered our lives forever. We confronted radiation, he showed courage and strengnth as he traveled to Boston for the 30 treatments. The effects of the radiation has taken its toll on his brain but yet he walks despite paralysis on his right side. He devised a method to tighten his shoe strings with one hand so that he can continue to walk. His adaptation to the struggles is what keeps me at his side. On this walk we have grown closer together and have learn to appreciate each other. I have maintained that he be as independent as possible and by taking a step back he has a sense of accomplishment with all his daily tasks. He has assited me to see the beauty in life, appreciate each day as a gift and he reminds me that I too can accomplish my goals. Over the past 10 years he has helped me find new ways to communicate. He can not speak but a few words but we can have a conversation like no others. His eyes, hand gestures, pictures can tell a story. His smile and kind touch, hugs and laughter fills my heart and I can feel his heart talk to me. I want to share with others this love and hope. That is why we walk