Saturday

July 24, 2009

I could write about a lot of things this week. I could write about our excruciating battle with the stomach flu, and you might laugh about how after Gaye (Ward’s mom) came and watched the kids so I could go to the doctor, and cleaned up more than her share of sickness, McCady said, “Mom give her a check, she deserves it.”

I could write about Ward’s 35th birthday, where we bought him a bike that was too tall for him. I mean, really, I might be bike-naive, but he’s not the shortest guy in the world!

I could write about my friend who offered to do anything for me, including finding me some marijuana, you know for medicinal purposes! (BTW She was completely joking!)

It would be really funny to write about how I ordered all my kids school clothes online—and then accidentally shipped them to my friend’s house in Ohio!

There’s a lot to write about, but what I’ve been avoiding the most is what I have to write about.

Disclaimer: It’s long and involved and if you don’t read it I won’t feel bad.

Since I arrived home from Colorado last Friday things have taken a sharp turn in a direction I never expected. I didn’t really feel comfortable about the two phase I trials they presented to me. So Saturday, Sunday and Monday I began a search of clinical trials across the country, just to see what my options are.

I’ve been holding out for the trial at UCLA—it is called a RAF inhibitor. Its purpose is to inhibit the growth of the melanoma cells from their beginning. If you were to see the growth of the cells they would grow

RAF-RAF-MEK to create the tumor.

The study had closed, but Dr. Gonzales said in a couple of months they would open it up in Colorado, UCLA and Harvard. I don’t have a couple of months to do nothing.

So Monday after lots of research, and running into huge roadblocks in my trial research, I talked to Maude. She is Dr. Gonzales’s right hand and she’s been the one guiding me through this whole process. Long story short, Dr. Gonzales found out that I was excluded from the RAF study because I have thyroid cancer along with the melanoma. She offered me a MEK inhibitor phase I trial. The problem with this is that I would basically be living in Denver for the first cycle of the treatment away from my kids and Ward. Plus the purpose of a phase I trial is to determine what the side effects are, as it has never been tested on humans. There are no foreseeable benefits for helping my disease. Additionally I spoke with the study coordinator who let me know that one lady had quit the study because she lost her vision.

I asked Maude to honestly tell me what we could do, now that I was excluded from the trial I’d wanted—what was my future? I’ve never seen Maude get emotional—never, but she broke into tears and said, “It’s just this damned disease, Anne. You’ve fought it hard for 18 months. If we had something for you, we would give it to you in a second.” She went on to say that I’ve exhausted all my options for approved clinical treatment, and now because of other factors I am excluded from the rest of the clinical trials.

Sure there were Phase I trials, but they are what they are, a trial to see how much a human can take of an experimental drug. They require huge amounts of time on site, and since there are none offered in Utah then I’d have to be away from my family. She told me that I have to decide what I’m going to do, if I’m going to spend my limited time here searching after trials across the US and out of the country, or if I’m going to spend that precious time with my family.

You’re probably saying to yourself, “That’s crazy, there’s got to be something.” I said the same thing, however in my search for trials I found that there are two main things that exclude me. Phase II trials for melanoma will A. not accept a patient who has two different types of malignancies. (And I have the blasted thyroid cancer too) B. Not accept patients who’ve had prior systemic treatment. (I’ve had plenty).

I’ve been angry and frantic and working my tail off amidst a week of terrible stomach flu to find something, anything, anyone who would take me for their trials. I’ve contacted the National Cancer Institute, and MD Anderson, and UCLA, and Harvard, and Huntsman Cancer Institute, and Las Vegas Cancer Institute and Johns Hopkins, and Goshen Medical Center. All have been helpful to different levels, but all have given me the same answer, “We’re so sorry for your situation.”

So, it’s been a week of reflection and prayer and tears, and begging for help. I can say that I got some relief on Wednesday when I went to see Dr. Gray. He understands me and my situation in a different way than any other doctor. He told me he would help me in any way he can. He’s going to try to help me get a drug called Avastin, which is not approved for Melanoma, but is being tested in trials I’m excluded for. He’s going to help me contact some drug companies to see if they can help me get some drugs that I just can’t get any other way. I’m grateful for him and his understanding and a glimmer of light.

So where am I now? I am literally sitting by a swimming pool (under an umbrella, shaking my head at all these sun-worshippers) in Park City with Ward and my girls—we ditched everything, including the stomach flu, and just got away. Where am I mentally? I don’t know. We’ve known from the beginning this is a terminal disease.

We know that we have been blessed beyond measure to have the time we’ve had this last year. We know more than anything that we are in God’s hands, and he knows much more about this that we do. How grateful I am to have a testimony of the atonement of Jesus Christ, that he knows how I feel, and that because of His sacrifice, and the promises I made in God’s holy temple that I will live again and that I will be with my family for eternity.

Whatever the next few months bring, I want you to know that I am grateful for you. For being my friends and my support.

28 comments:

Nikki said...

You are so wonderful Anne and so strong. I'll keep praying for you to find something to help you, to keep you here with your family for as long as possible.
Your testimony means so much to me.

Amie said...

Anne, you are incredible and I'm so grateful to be your friend. We're praying for you, that you can have peace and joy with your family. Hugs.

Josi said...

Do you ever want to stand on a chair, whip off your scarf and say "Get out of the damn sun people!"

I'm just . . . sorry, and yet glad to know you and see your strength. You continue to be in our prayers, and I will add Dr. Grey as well, so that he can be inspired on where to go and what to do. Love you Anne.

Di said...

I love you, and I love your testimony. Thanks for sharing it. You never know how many people will be touched by it and how it will make a difference. I know it will. I take it Ward never did start throwing up :)Chalk one up to another prayer answered right? I hope you have a wonderful little get away with the kids and Ward. I can't wait to see you again. Love Di

njfroerer said...

Anne I really will do anything for you? (You know what I'm talking about::) I hope you are having a great time in Park City. I'm so glad that Ward didn't get sick (at least for now). You are my hero. I am so blessed to know you and have you in my life. Not a day or prayer goes by that I don't think of you and pray for you and your family. Thanks for being my inspiration. Friends forever...J.

Stephanie and Justin said...

Anne you are such a wonderful ray of light in this dark world. Thank you so much for sharing your wonderful testimony. Isn't the best to have the true knowledge of Heavenly Father's plan for us. I love you and your family so much and our prayers are constantly with you.

Lasting Memories by Marjean said...

Oh my sweet Anne,

I don't even know what to say-just that I love you. You are so strong and I love your spunk and your sweet personality. I am so sad that options are running thin. (Maybe you need to run south of the border and try some of that MaryJane-or the other stuff they do.) Have a fun time with Ward and the girls. Sorry to hear you've had to deal with the flu on top of everything else.

You are in my thoughts and heart daily. We pray for you every day. We will continue to plead with the Lord for more time.

Sending much love your way.

Marjean

Lasting Memories by Marjean said...

Just wanted to pass along these words of wisdom from another amazing young woman battling cancer. I liked it and have thought of it a lot lately. here goes, excuse the French!

"When life hands you lemons, make orange juice and leave the world wondering how the hell you did it."

You are amazing-I know you do it with a lot of faith and love.

I love you!

M

Karla said...

I am so sorry to hear that you are at a dead end at the moment. You have come so far and it must be so frustrating to just sit and not be able to fight back. I want to give some words of encouragement but I really don't know what to say. We miss you and love you and pray for the best for you. You have been a blessing in our lives and are sad that we can't see you more often. But we understand that you are closer to help and where it is best for you. Just let me know if I can ever do anything at all to help.

Shelly said...

Anne I love you and your family. You are all amazing. I wish with all the wishes that I could reach out and give you a big hug. You have been through alot these past months. You have touched many people with your strength, determination,love and faith. Thank you for sharing all the really hard stuff with us all. God's will is a hard thing to understand. May you feel HIS tender mercies in your life and May your life be filled with peace and love. I am so proud of you and how you have dealt with all of this from day one. You are truley and inspiration.

Ronda Hinrichsen said...

Oh, Anne,I've been thinking and praying praying praying for you all week. I'm so glad you have such a wonderful husband and such a strong testimony to help you find the joy and beauty and love and goodness in your life. We all love you. Please remember that.
I also agree with Josi. I'll start praying for Dr. Grey, too.

Chalaine, Paul, and Bailey said...

Hi Anne,
This is Laraine Whitear. I got on through Lanie's Blog (Chalaine is Diana's friend our youngest daughter.)
Anyway I have talked with your mom so often and followed the course of your melanoma craziness.
I'm not sure if your mom has told you, but I have melanoma also, but it is still stage 3 (we hope) and I have been on a study at Huntsman for almost two years now.
So far my results have been very positive.
Sounds stupid for me to be sharing this with you...but there is something I want to share with you.
I want you to know how much I love you and always have loved you for your care for Danette. You are an amazing person.
But through your months of treatments I have prayed and prayed for you and even asked the Lord to let me switch places with you! Truly that is not a big thing on my part. I'm a grandma who has lived a wonderful, full life.
I don't know why the answer was no...
Yet, as I read your blog today and have known all along...you have enough faith to leave this in the Lord's hands and He knows the end from the beginning.
I'm so sorry if this sounds just crazy. I just wish I could put my arms around you...more than anything I wish I could make the cancer better.
Please know that there are so many who love you and your family so dearly. Please know you will be in my prayers every day and have been so many times these past months.
Like you I am so very grateful for the gospel! My heart so aches for those who do not have the knowledge we have been blessed with.
How I love you dear Anne. May the Lord's richest blessings be yours eternally...and they will be.

Your blog is awesome. I need to be so much better about taking time to read and communicate with you...we hope for a very long time!
Love ya,
Laraine

Sarajane said...

I am sorry you didn't get into the study. I have learned that God is holding us in his hand and He will open doors for us and our families even after all the windows are closed. We pray for you guys and are grateful for your generosity to us and example in our lives.

K.Booth said...

Anne, You simply amaze me with your grace and beauty through this ordeal. As I am writing this I am thinking what could I possibly write to you that would not seem trivial or trite? I am sure you have read this before but, this saying came to mind after I read your post:
Cancer can not crippel God's love...
Cancer can not shatter Hope....
Cancer can not corrode faith....
Cancer can not destroy Peace...
Cancer can not kill Friendships....
Cancer can not shut out Memories...
Cancer can not silence Courage...
Cancer can not invade the Soul...
Cancer can not steal eternal Life...
Cancer can not conquer the Spirit...

Hang in there, believe in miracles and we will believe with you. I just feel like barging through the door of all those clinical trials previously mentioned and saying, "oh yeah, we will show you!!" I love ya, and am here for what whatever you or the girls need.

Paulina Kasmer said...

oh anne. we love you so.

Kirk and Carin Chugg said...

Anne I just wanted to let you know that we love you and your family and we miss you in our ward. We pray for you daily and I am so grateful to you for your testimony. I know you hear this a lot but we are here if you need anything, ever.

Rip Curl Mom said...

I am always at a loss for words when I think of you and your little family and these "Goliaths" that you face on a daily basis. You have changed my life in so many ways already. You are always in my thoughts and prayers and if you need anything at all, I am here.
Love, Kelly

Aoi Tonbo said...

As always you have found a way to brighten my outlook on life. Though things are so uncertain, if I could even look at life through your glasses for a moment I would feel blessed. You make all my cares look selfish, thanks I needed a wake up. You are a wonderful person and you have a very dear family. We love you, Ward, and the girls. You are always and forever in our prayers. (don't know how well this all sounds, but I hope my meaning comes across, running on little sleep and trying to type with teary eyes, sorry)
Love, Kim and Joseph N.

MKG said...

I don't know what to say but a huge AMEN to all the other comments that have been made - and to let you know that we too continue to pray for you and Ward and the girls EVERY DAY!

Monica Larson said...

Anne. . . . where do I begin. . . . I love you so much! I can not even express how grateful I am for you and for your goodness. When we moved in to the ward I remember you coming up to me and saying "We are going to be great friends, I just know it" and how right you were, and how blessed I am!

I am so lucky to know you and have you as a friend. Thank you for your strength and your testimony. You amaze me!

I told Emmalee about your online shopping adventure. She has hit her closet and we plan to get something to you. I know it isn't much but I hope that it will help, or at least be something fun for your girls. Emmalee loves them :)

We love you and we love your family. May the Lord bless you and bless Dr. Grey.

Laurie Jones said...

Anne, thanks so much for sharing your feelings and your testimony. You really are such a strength to me. I want to help you, I want to do something for you!! A lot of times I feel I don't have the right words for you.

How frustrating to have so many roadblocks. We never know what Heavenly Father has in store for us, but how lucky we are to be part of this gospel and know that in the end he will take care of us. Let me know if you need help with anything!!

John Petersen said...

Anne, I cry almost every time I read your blog. Not just the bad news ones but the funny ones too. You make me smile every time I think of you. Your testimony at the end of this post did it to me again. My thoughts and prayers are with you. Love you!

Karla said...

Anne, I've read this last post on your blog many times. I wanted to post something but just haven't been able to find the words.It's so hard to watch you go through so much. Most of all I want you to know that you touch my heart and I love you very much. I love everything about you. Everything. You inspire me to be a better person. Thank you for your strong, beautiful testimony. We continue to pray for you and for Dr. Grey and your family everyday. We are most grateful for the days we are 'blessed with Anne'.
love you forever,
-Karla

CaMnKeLL said...

Oh goodness, Anne. Just skimming through all your comments, it's so apparent how many lives you continue to touch with your faith and testimony and example. I love you and I love to feel connected through your blog. Your faith with create miracles, as it did for my mother. Your sweet husband and beautiful girls are so blessed to have you. Thank you for sharing your candid thoughts and pure testimony... Love you, Anne.

klod said...

I can't say anything that hasn't already been said except Amen. I love reading about your cute girls and I tear up when you get to the serious stuff. I don't know how you write so well but it is beautiful and we feel your strength. You give the rest of us the ability to go through our mini challenges. You are our hero and we love you.

Amy said...

Anne, I hope you remember who I am from Ohio Amy Cannon. I have been silently reading your blog and amazed at the courage you have. I have cried inside and wished this could all be taken away from you. I hope you are not upset that I have had access to your blog. I do hope you know that I do care. I don't know what else to say other than what everyone else has said. You are at a different point in life than everyone else. You seem to appreciate more and understand the eternal things more than any of us. You are able to endure more than any of us would ever be able to. I can only imagine how at times you are crying. I would find myself curled up and crying constantly and cursing and wondering why this is happening, but you don't seem to be there or ever have been there. I do wish you and your beautiful family well. Love, Amy Cannon

Moffitt Family said...

Anne - I just want to tell you I love you and your beautiful family! I remember having talks in Ohio about how cancer can change a person (for worse) - you've become even more amazing. When we lived near each other you were a constant example to me. Watching your interactions with people made me want to love others more. I don't know how many times I've been in a mean mood or angry and your blog and emails have melted my anger away and given me much needed perspective - thank you! I wish that I could do something for you now in return. My love and prayers are always with you, Ward, and the girls!

Scott and Kourt said...

You are so amazing. Thank you for being an example to us. We love you!We will be coming this weekend to Park city (wed, thurs and fri) and then to Ogden on fri-sat. We would love to see you if you can.