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 

link to book reivew in the Beachcomber - Destin

http://www.thebeachcomber.org/books818.htm

The 20 things I wish someone had told me 20 years ago when we started on this brain tumor/cancer journey.

1. **Understand statistics for prognosis and know that courage, hope, love, age and health skew them.
2. **Research the treatment options provided by your doctors.
3. **Join a support group and if there isn’t one in your area start one. Join Brain Cancer family.
4. **Have a living will done. Making one doesn’t mean you’re going to die soon and discuss its contents before each surgery.
5. **Make funeral plans and discuss what each of you want.
6. **Learn about the rehabilitation, home health, hospice and palliative care agencies and facilities in your area.
7. **Volunteer at any of these places to really to get to know the care they provide. Hospice volunteer training changed my perspective on death and dying.
8. **Make a list of all your online usernames and passwords. Especially banking accounts.
9. **Get a medic alert bracelet. If you are the primary caregiver you also should have one.
10. **Keep an ongoing list of medication, procedures, treatments, and surgeries.
11. **Keep any of the list and the above documents on a flash drive in a safe place if possible in your pocketbook. Share the password with at least 2 people.
12. **Schedule exercise into your daily activities, if you have trouble with overweight/overeating, follow a healthy food plan like weight watchers.
13. **Keep a journal.
14. **Plan and keep vacations.
15. **Maintain a budget and don’t impulse buy with the excuse, “I should get this now because I’m not sure how long he/she will be here.”
16. **Don’t delay education plans, getting advanced degrees if desired, help both financially and emotionally.
17. **Discuss your goals, mission, plans for the future and work each day to achieve those.
18. **Understand the requirements for disability, Medicare and gather information for application.
19. **Know your health plan from work and understand co-pay, deductibles and flexible spending options.
20. **Talk about the elephant in the room, be open about the fear of death and disability from having a brain tumor. Keep the elephant in perspective.

By: Patti Meserve Gauvin, Author of Hope through the Eyes of Love – Life and Marriage in the Face of Brain Tumor. Contact: patti.gauvin@yahoo.com

Our story as posted on FB groups

 I call it our story because Ron is unable to. Thankfully it is a long one so i will provide some highlights. 20 years ago Ron started complaining of dizziness and was walking into things. I assumed he was having problems with his ears. We had gone SCUBA diving and thought he had damaged his ear dr...um equalizing. He went to see an (ENT) Ear Nost and Throat doctor. As a nurse I typically skip the family practicioner and send him to the specialist. The ENT sent him for an MRI to rule out an acoutic neuroma. Not a great diagnosis but it soon got worse. The neurologist on call at the hospital got Ron's films and immediately called us. I knew it was not good news when a doc you don't know calls you and says to make an appt as soon as possible.

We arrived at her office and I immediately knew when I saw the films that that thing in his brain did not belong there. That was the beginning of our brain tumor journey. An astrocytoma grII-III. 20 years later, radiation, 7 surgeries, more MRI's than I can begin to remember, loss of function in his right side, aphasia, visual changes, seizures, therapy, blood tests, falls and tiredness to make any one give up hope. Not us. He is LIVING with this and each year that we hear all is stable we are reminded how fortunate we are. He is the billboard of courage. It has been difficult watching him slowly loose function in his right side. But he has taught himself how to do everything with the left and continue to walk despite the weakness. The worst part of this is his aphasia. I would love for him to be able to read, share his own story, tell me how he is feeling, tell me what he needs. We have adapted to that loss too.

I would not have learned so much about life and living, hope and love without him. My passion is to share our story and to reach out to others to offer hope and love. We have published a memoir, Hope through the Eyes of Love. I would love to share it with each of you. So glad to be a part of this group and look forward to sharing your journey with you.

Links to pages and websites added to my blog

I have added some pages and websites to my blog.  Please comment with sites or pages you have found helpful. 

July 2011

July is a significant month in our life.  20 years ago we saw the MRI film and heard those words that is a brain tumor in the temporal lobe.  17 years ago Ron's Dad died at the end of July after his battle with prostate cancer.  Ron's Dad told us that his wish was that Ron would live a long life despite his tumor.  Ron honored that wish and has never given up. 
I celebrate my birthday in July and make a wish every year as I blow out my candles on my ice cream cake that I will have Ron at my side for my next birthday.  Last July that cake tasted so good because Ron had made it through yet one more surgery.  In preparation to celebrate this year I started the process of getting our book published.  Here we are a year later and I can't wait to blow out those candles.  Thanks for joining me on this journey and your support in this endeavor.