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.

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