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

Facing brain surgery - a year later.

It was just a year ago we were facing Ron's pending surgery.  Initially it was planned as our yearly vacation in Maine but as the days approach I just knew he needed something done.  He was having seizures often and falling too frequently.   I dreaded the thought of making him stay inside but he really wasn't safe outside.  Wheelchair was a thought.  So my plan was that they needed to do an MRI, plan surgery to drain or clear out the cyst and then all would be well.  Having approach surgery 6 other times I was geared up emotionally and started on the logistics.  We made it to Boston July 14th , had the MRI and would actually have been disappointed had they said there was nothing they could do for him.  But the doctor agreed after seeing the films and surgery was planned for July 19th.  When asked when we would like it done, according to my plans, the earlier the better because we had a vacation planned.  With some help from amazing friends and family the logistics worked out as planned.  We were able to stay with a good friend the night before surgery and it was during that stay I was introduced to the concept of co-authoring a book.  Yes, Ron was facing surgery the next day but we discussed my dream of sharing his story with others.  We talked over how courageous Ron had been and will be during the upcoming days.  During the next day I did not think much about the book, my mind was occupied over his recovery but I had a strange sense of calm and just knew in my heart we had done the right thing.  A few days after surgery Ron was walking on the beach in Maine and the phone number for a writer and co-author was in my pocketbook.  I plan on blogging my reflections of this process over the next few months.   

Free Shipping for our Birthday

For the remainder of the month I will cover shipping cost.  In honor of our birthdays we want to share our story with you with no shipping cost.  I will send you our gift to you for $19.99

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.