ANA Discussion Forum
AN Community => AN Community => Topic started by: MaryBKAriz on April 11, 2008, 06:57:43 pm
-
Hi to those who chose to read this.
I had no idea where to post this, but figured others here are wrestling with tigers on different fronts.
I am trying to come to grips with what has happened the last few weeks. It hasn't even been 3 weeks since I learned there was such a diagnosis, yet I also feel like I know more about the brain, nerves, hearing, etc. than I ever could have imagined.
I am so thankful for a dear friend and neighbor, Linda, who has been there for me through the years. She is an angel on earth. She came over when she heard I had this diagnosis. Her bald head, ever-increasing skinniness, no eyelashes nor eyebrows and she was thinking of me! She has fought melanoma for 2 1/2 years. The original spot was on her head and quickly spread. It went to the brain and she had the newest Gamma Knife Perfexion in January at Barrows Neurological in Phoenix on 12 - 18 tumors. She encouraged me if I do it - it is no big deal. That is how she has faced every challenge. What an inspiration!!!!!
Last time I saw Linda was Wednesday night when she was taken by ambulance to the hospital. As I stood in her driveway, she was wheeled out on the gurney and she saw me, smiled a BIG smile and we reached out our hands to each other and I told her I loved her. I knew it would be the last time I saw her. Now she has perhaps hours to live, she is not able to recognize anyone. I was given the gift of seeing her in some of her last cognizant moments. Her family from around the country has gathered. The love is palpable.
I am BLESSED! Although I have gotten the news of my AN, I have a mentor who has gone through so very much more with such grace. I have been given the gift of putting this in perspective while losing one of the dearest friends on the earth. It is like Linda to be giving me this final gift. Please keep the she and her family in your thoughts and prayers.
If Melanoma is a Tiger, I guess I can tame my housecat, "Goldie", my AN.
Thank you for "listening".
Take care all,
Mary
-
Mary: what a beautiful sentiment to your friend Linda. I'm so happy for you that you have such a wonderful friend. I can only hope her journey will be pain free, & the universe receives her with open arms.
It seems she has helped you with one of the most difficult issues with this AN - keeping it in perspective, you are bigger than the AN is.
Always good thoughts, Nancy
-
Mary~
I am so sorry for this painful time for you, but what a wonderful friend you have been blessed to have! It is an impression like that I only hope I can leave on others and this Earth when it is my time to go. Know that she will be in a MUCH better place and PAIN FREE and that she will be with you every step of your journey. I will pray for PEACE for you and for all her loved ones...
K
-
Mary,
I am so sorry to hear about your friend Linda. And I'm sorry that you have to take this whole AN journey as well. I am glad that Linda was able to inspire you with her strength and courage. I know she will be in your heart during your challenges just like you were there for her during hers. Everyone should be so blessed to have such a close friend. It's too bad it always seems to be for such a short time.
Know that your AN friends are here for you, and of course will be keeping you, Linda and your families in our prayers.
Lori
-
Mary,
You have shared a touching story about Linda's generous spirit and friendship. People come into our lives for a reason. You have her courage and inspiration as your guide.
Yes, you are right: you will be able to tame "Goldie".
All the best,
Kate
-
Mary -
what a beautiful, touching story; thank you for sharing it with us.
I will certainly keep Linda and her family in my prayers.
You are both blessed to have each other as friends.
Jan
-
Hello Mary,
I, too, am moved by your touching post regarding your neighbor and friend Linda. We all have such different roads to travel, and it sounds like Linda traveled hers with grace and dignity.
We all know that there are many, many more people who are much worse off than we are, but still, our journey with this AN is quite a different path than we intended to take, and the consequences are unique to each and every one of us. Some of us fly along with minimal impact on our lives and others have quite a few hurdles placed in front of us. But, I think that most of us feel very lucky that it isn't as dire as it could be. Linda's story certainly does put things into perspective. I hope that your eventual treatment and recovery goes smoothly and that your hurdles will be small ones.
Thank you for telling us about Linda. Both of you will be in my thoughts tonight.
Sue in Vancouver
-
Mary,
You and Linda are very lucky to have each other. I don't have any sentiments that haven't already been said and offered. My thoughts and prayers are with you all.
Brenda
-
Hi Mary-
What a wonderful friend to have. Thank you for sharing this with us. I know what it is like to watch someone you love fight cancer, and my heart goes out to you and Linda both. She sounds like someone who has been able to find a silver lining on each dark cloud - what in inspiration to us all.
Debbi
-
WOW!
What a great group of people here! I didn't even know if anyone would read it....I just thought I had to put my grief somewhere. THANK you so much for all your kind replies. It really helps. When you are going through hard times it is amazing where you find angels. A month ago I didn't know about ANs and now you have comforted me here today.
Linda is hanging on. I will get comfort from her and all of you as I get my second opinion today (yes on Saturday, weird, huh?)
Thank you again!!!!
Mary
-
Mary,
Thank you for sharing such a personal and important person in your life. May Linda feel no pain, may she feel free as a bird.... may peace be found in her soul.... and in your's. My thoughts and prayers are with her... and you... during Linda's most difficult journey! Please keep us updated and know that I think of Linda, her family, and her friends (her very dear friend in you!).......
Phyl
-
What an inspirational story, Mary. I continue to be amazed by people and their strength. It also confirms my feeling that this AN thing of mine is really not too much of a big deal. So many people have much bigger problems. It is good that you are seeing the positive in this tragedy - hope it will help you and your friend's family in the tough days to come.
Cindy
-
Mary:
Thank you for sharing the poignant story of your cancer-stricken friend who was your mentor as you confronted your AN diagnosis. She certainly was an inspiration to you and now, to many more who have read your moving account of your relationship and your last goodbye.
My brother-in-law died of brain cancer and spent his last few months at home, at his request. My sister had to watch him deteriorate before her eyes as he slowly lost the ability to speak, move or communicate in any way. She endured this all for his sake and has never regretted it.
Your friend, Linda, gave you what she could in her last weeks - her friendship - and I'm sure she appreciated your friendship with her, too. You'll never forget her...and now, thanks to you, Mary, many others won't either. Thanks again.
Jim
-
I am so happy I had a place to post the message. You all are amazing! I had tears in my eyes as I read the messages people wrote. I printed them up because they are giving me comfort. I wish I could give everyone a big hug!
I did have my 2nd opinion today. This Dr. recommended retrosigmoid. He had the audiology test done again. Since April of last year (when I first had symptoms of a full ear that wouldn't pop) my word recognition has gone from 100% to 28% and there is a lot more high frequency loss. This topped by the fact I am getting more and more dizzy and cannot help my 87 year old mom, who lives with us, with her balance anymore.
I see a second surgeon Monday morning in connection with Dr. Daspit - a Dr Weisskopf (sp?). I will also be getting an appointment soon for the GK and CK with Dr. Kresl. A big decision on the horizon. I have decided that I have 90% eliminated the wait option since my symptoms are worsening and I have occasional twitching on by bottom lip now.
Linda is still hanging on. We had dinner with their large family last night. It was so good to be in their family fold. They are amazing people, just like Linda. I feel her cheering me on, somehow.
I also feel the cheers of you all. I like to be a cheerleader too, so I will look forward to doing that as I travel this journey with you.
Jim your sister went through so much. I am glad she did what she did but how very difficult that had to be for her.
Take care from sunny warm Arizona. (I have stopped to appreciate that today)
Mary
-
Mary~
I am jealous of the "warm & sunny" there -- it is cold & WINDY here!!
K
-
Mary,
I did have my 2nd opinion today. This Dr. recommended retrosigmoid. He had the audiology test done again. Since April of last year (when I first had symptoms of a full ear that wouldn't pop) my word recognition has gone from 100% to 28% and there is a lot more high frequency loss. This topped by the fact I am getting more and more dizzy and cannot help my 87 year old mom, who lives with us, with her balance anymore.
I see a second surgeon Monday morning in connection with Dr. Daspit - a Dr Weisskopf (sp?). I will also be getting an appointment soon for the GK and CK with Dr. Kresl. A big decision on the horizon. I have decided that I have 90% eliminated the wait option since my symptoms are worsening and I have occasional twitching on by bottom lip now.
Take care from sunny warm Arizona. (I have stopped to appreciate that today)
Mary
Mary,
Hugs back to you. Your decision to take action since your symptoms have changed makes sense.
It sounds like you are being very thorough in your doctor consults. Afterword, you just have to weigh the options that are right for you.
All the best on Monday and with your other upcoming visits.
Kate
-
Hi Kate,
Thank you for the message. It sure helps to "talk" to people who have walked in these shoes. I really think once my decision is made I will be comfortable with it. My scientifically minded husband goes with me to all important visits and we compare notes. This is his life, too. We are in sync both with gut feelings about it and our interpretation of all the information we are trying to absorb. I am so thankful for him.
Take care and have a great weekend!
Mary
-
Mary -
As you say, a big decision is on the horizon. I'm glad you have your husband to support you; family is really important at a time like this.
I think eliminating the watch and wait option from your choices is a very wise decision in light of your decreasing hearing and your balance problems.
If it helps, I had retrosigmoid almost a year ago and SSD is pretty much my only side-effect. I had small problems after my surgery, but with time they went away.
I think it's a great idea to check into GK and CK before you decide what action to take; it's good to look at all the possibilities before you make your treatment decision.
Keep us posted,
Jan
PS - I'm glad to hear it was warm & sunny somewhere today. I was just outside about an hour ago and we had huge snowflakes coming down. Didn't look like they were sticking though - thank goodness!
-
Keeping you , Linda and her family in my thoughts...
she sounds like a great lady