Wednesday, September 24, 2008

My cancer history 2003-2008

I am a 36 year old stay at home mom with a Master’s degree. Despite my education, I have never held a full time job in my life. I am a textbook example of the need for breast self-exams, as well as the need for regular check ups at the ob/gyn. I noticed a lump in my right breast in the fall of 2002. I remember watching a talk show about breast cancer and I specifically thought, "My lump can’t be cancer. At my age, it is almost certainly benign." I guess I figured if I ignored it, maybe it would go away. David and I celebrated our 10th anniversary that December. In January, we decided to sell our starter home and move into a newer and nicer home, close to David’s office. We made an offer on our house the same day we saw it; the house had been on the market only one day before the owner put out the "sold" sign.

In January, I decided to make an appointment with a surgeon. During the office visit, he asked me to have a mammogram in February before he could remove the lump. The technician called me back the same day and asked me to come for an ultrasound. The radiologist did a biopsy and the next day I was reeling from a diagnosis of breast cancer. I was 31 years old.
The year 2003 was one of surgery and treatments. I had a lumpectomy, mastectomy, oopherectomy and axillary dissection (lympyh nodes removed under my arm.) I had a PET scan which found that the cancer had already spread well into my bones, putting me at an immediate Stage IV. Instead of chemo, my oncologist recommended tamoxifen and later I had six weeks of radiation to the chest wall that autumn.

2004 was my year of reconstructive surgery. A plastic surgeon did a TRAM flap reconstruction and I was happy to look more normal again. The insurance paid for everything, after the deductible and out of pocket maximum had been met, of course. We estimate that it costs around $9000 to keep me alive, each year. That includes my insurance premiums which cover the entire family as well, though they rarely need the coverage. I went from being healthy to being terminally ill in a matter of weeks, but of course the cancerous tumor had been growing in my body for 8 or 9 years, probably since the time I had my first child in 1994.

Fast forward 4 years. My cancer has slowly but surely marched throughout my body, taking hold in new places and causing new aches and pains. Every year, I got a little bit sicker, had a little more pain, had more frequent tests, and new treatment changes. In March of 2007, the oncologist found evidence of cancer on my liver, so I began chemotherapy. I was worried and scared, but I believed that by enduring the horrible side effects, the chemotherapy drug could help save my life, and prevent the cancer from spreading into my vital organs. After five months, I couldn’t stand the treatments any longer. I got weaker after each treatment and it was harder to bounce back before the next treatment knocked me down. I thought, "Surely by now the treatments have killed those cancer cells." Every month I would need a blood transfusion to replace the red blood cells destroyed by the chemotherapy drug.

I took a break from chemo and started a part time teaching job in September, 2007, at the charter school my childern attend. Unfortunately, without the treatments, my pain began to get worse. My bones ached and I was tired and worn out. I would come home from work and take a nap, as the pain medicine made me sleepy and I was catching up on sleep, since I got up early for work. By November, I could no longer stand it. I felt like I had tried to beat back the cancer with the chemo, but as soon as I stopped treatment, it came roaring back with a vengeance. It made me wonder if the chemotherapy had left my body weaker, my immune system so taxed that I had more pain and more cancer than before I started treatment. Still that was all the oncologist had to offer me.

I wasn’t as sick with the second drug. Through Christmas and the winter, my pain was slowly but surely lessening and I had hope that the treatment was working. In April of 2008, my doctor ordered another PET scan. I was hoping to see improvement, but the news from my oncologist was not good. She reported more progression of the cancer into lymph nodes in my abdomen, numerous lesions on my liver, additional metastases in my hips, spine, shoulders, neck and knees. I immediately took the doctor’s advice to switch to a third drug. In August 2008, it was time for more tests and another round of bad news.

Suddenly I questioned my past decisions. Did chemotherapy actually make my cancer worse? Why do I keep getting sicker? Why doesn’t my doctor give more hope or more options?
I was confused and overwhelmed at the sheer number of websites about cancer therapies, many of which contradict each other or vy for your attention with helpful anecdotes of miracle cures and remissions. Whom to believe? Where to turn? Suddenly I could not take my doctor’s word for absolute truth. It was time to stop and reevaluate, but I had less time than I had counted on.
Three weeks ago, I spent the better half of Labor Day at the ER, where my liver tumors were enlarged enough to give me abdominal pain and trouble breathing. All tests pointed to the cancer as the cause. After several doses of morphine, I was sent home with the instruction to follow up with my oncologist on Tuesday morning. I was sure she would want to see me. I imagined she could recommend some type of treatment for my pain, perhaps radiation, perhaps the new radio frequency ablation, or the cyber knife?

The reaction of my doctor blew me away. She wanted to know if I had enough pain medicine. When I said no, she instructed me to ask the nurse for my prescription. "What should I do about my liver pain?" I wanted to know. "These episodes are to be expected," she said calmly and ended our conversation. Stunned, I tried to re-analyze what just happened. Does my doctor care if I die? Does she just expect me to take pain medicine to "make me comfortable" until my liver fails in the coming weeks or months? Does she expect me to take her only recommendation of more chemotherapy, so I can live out the remainder of my days with nausea and baldness?
That day, I decided to get a new doctor. On my insurance plan is an oncologist in Salt Lake. Born in Jordan in the Middle East, Dr. Shehadeh attended med school at University of Michigan and recently practiced at the University of Minnesota. He has four children himself and seems to care about me and wants me to improve my situation. He has recommended a combination of drugs, beginning with two infusion treatments, once today and once in 3 weeks, of a new taxane drug called Ixempra. I will also have an oral dose of Xeloda, a chemotherapy drug which is taken in the form of a pill. In 6 weeks, Dr. Shehadeh wants to do another PET scan to see if the chemo is shrinking the tumors.

I’m a little scared today and worried that I will be quite sick in the next few weeks. One blessing is that a new pain management Dr. met with me last week and prescribed some new pain medicine which has helped to keep my bone and liver pain under control, so I will mostly be fighting nausea and fatigue, with the chemotherapy. I also got my hair cut short yesterday, as I anticipate having to wear my wig once again.

At the same time, I feel blessed and don’t have the time to list the wonderful friends and family who have called, written, left messages, sent flowers, given gifts of comfort and inspiration, have helped with my children and my household and so on. I created this blog so you can connect with each other and I can read your comments and write my own. I’ll try to answer your questions. I appreciate your prayers and your love.
Emilee

22 comments:

LUV5KDZ said...

Emilee, I love you. You have been such an example to me of dealing with this adversity with such a postive outlook. I am so sorry these next few weeks are going to be such a struggle, but you will be in my constant prayers.

THANK YOU so much for starting a blog so we can all learn from you and hold your heart in ours while you go through this journey. May you feel our love and support and know that you are never alone.

I pray that David and the boys will be comforted and strengthened as they watch you once again put your hand in the Lords hands and do whatever you can to overcome this disease.

Be well, my friend, and as strong as you can be. Keep up the good fight. I look forward to hearing from you soon (((Emilee)))

Dina said...

Aloha Emilee,

Your blog is great! I'm so glad you found a new doctor--the other one was insensitive beyond belief. And now, enough of that, because I don't like to criticize, but I felt that had to be said.

So, you're a blogger!!! Good for you! I'm ashamed to say I prematurely deleted my blog, which I will speedily remedy. I felt my blog was so lame, but it wasn't, really. I was comparing myself to my friend's blog, www.4kidsnodog.blogspot.com, which is really amusing. I sent you a link in an email.

I'm so pleased you have good support. I've been praying for you regularly, Emilee. And now, it seems some real hope is on the horizon. Keep your spirits up and keep blogging!

Love you!
Dina
P.S. I cut my hair short, too (the humidity here made me a frizz-ball--didn't want to deal with it anymore!

Jenn K said...

Yay, I love reading your blog!!! Look forward to many more postings. -Jennie

Jared Oleson said...

You're a trooper and we love your blogging. Keep it up.

Virginia and Joel

Debbie Burraston said...

Emilee, I am so glad you started a blog. It is so important to stay connected with each other. These last years have had their ups and downs, but you have never lost your amazing positive outlook. And on those rare "down days" it's been Ok to feel that way. You have been an example of faith, hope and strength to so many, including me and my children. Berto loves you and won't let anyone say a prayer without blessing "Emily Ellis" (even cousins on our visit to California) Your friendship has been a great blessing in my life. I am so glad that our paths have crossed in Cedar Hills. You have always been an amazing example to me of the need to live every day to its fullest! You have a beautiful smile that lights up the world of so many around you. It has been so great reading your blog. It will definitely help us all stay connected to you and each other... as we share the days ahead together. Always remember you are not alone in this fight. You are surrounded by so many who love you and who will be there for you whenever you need us. You are a strong beautiful daughter of your Heavenly Father...Keep smiling!...and writing!
Love, Debbie

Unknown said...

Dear Emilee:

Please know that you and your family are in my prayers always. Life is not fair in many ways and all we have to hang our hat on when life hits us hard is the promise of the Lord that He loves us and watches over us.

At times I am sure you have wondered whether He has forgoten about you and your family and why you have to go through this great challenge. Frankly I don't know why and I find it so unfair on you and your family. However, I do know there is purpose in life and the relatively short time we will all have here was meant to be a time of trials and learning and a time where our faith may be challenged to the core.

May God's love be with you and your family and give you a sense of comfort and understanding. I know God loves you and I pray that He will provide a miracle in your life and grant you the desires of your heart.

If there is anything I can do for you please let me know, meanwhile know I will keep praying for your support in this fight so that you will conquer no matter what.

Sincerely:

Amedee Sanchez

greg said...

Hey, your dad and I are cousins, want to hear some stories about him when he was a kid, or maybe your grandpa Dan and my dad? Best wishes and keep your chin up, Greg Giovanini

Unknown said...

Emilee, I admire your courage! I am glad you got a new doctor. The blog is a great idea of keeping all of us in your home town up to date. God bless you and your family. Enjoy each day.

Fondly,

Lory Lauper

Glen and Bonnie said...

Dearest Emilee,
Wow! Heavenly Father has some pretty cool children, don't you agree? Obviously a lot of them LOVE you too. This blog is sure a nice way for all of us to get to know each other better. THANKS for always being such an inspiration to everyone who makes your acquaintance. Heavenly Father was certainly extra nice to us for allowing us to the FIRST! Since your birth, we have always been awe-struck by YOU!
Now and forever we will love and appreciate you - even as you have created this blog to allow us to share all of your wonderful family and friends!
Always LOVE from your
Mother and DAD
(Bonnie & Glen Dolberg)
P.S. Please also express our thanks to your sister-in-law, Jennie, for assisting in creating the blog!

Anonymous said...

Hi Emilee,
We don't really know you, but we know your mom and dad, who lived in Davis where we live. Your mom and I grew up as backdoor neighbors when we lived in Kensington.

We feel honored to be included in your blog. We admire your faith and your courage. Prayers will go to Heaven from Davis! We know Heavenly Father is watching over you.

Love,
Sue and Sheldon Dahl

Deb said...

Emilee,

How brave and courageous you are! I admire all who find positive ways to live through difficult times and situations. Your positive ways are a light to others. How blessed the we are you are here. I want to thank you for sharing your talent at the Family Reunion. It was a joyous heart as I watched and listened to your beautiful gift and talent.

Thank you for sharing through this blog. Though we really do not know each other, as I have heard of your health issues I have thought of you often and want you to know our thoughts and prayers go out to you and your family. May Heavenly Father grant you the gifts to go through this in the way that will bring peace and joy to you and your family. May each moment be special, as it should be for all. I know our Father in Heaven will be with you. My heart goes out to you. I am Deb your mom's Aunt Myra's youngest - NOT SOOOO YOUNG ; ) !!!!

Deb Cheney

The Ingrid Nickelsen Trust said...

Dear Emilee,

I am your mom's cousin - don't quite know technically what our relationship is called, but just know we are related. Your writing and sharing is inspiring, and elicits instant love, compassion and support from me. I had no idea that this was happening as I am not a very consistent communicator, unlike my gregarious mom, Carol Grant, whom you've probably met.

I have a very dear friend, Jack Mays, who received a 3-month terminal cancer diagnosis nearly four years ago, and it has been a miraculous event to watch his life continue, to evolve and to inspire those around him. As a way to deal with my own grief of losing my best friend, I started to film him and his artwork 3 1/2 years ago, and have finally finished the edit of what is now a 90-minute arts documentary, which I hope to complete in the coming year.

Your writing has given me much needed additional inspiration to finish this project in order to share it, as Jack's optimism and spirit have been what's saved him, though he's got Stage IV cancer in 3 major organs. Though he's now undergoing chemo for the first time (his liver had filled with a tumor, and before this year "they" said there was nothing they could do for him). Jack has also put himself on a macrobiotic diet, exercises and takes saunas daily, but most importantly, has rid himself of all negativity, stress and his own brand of sarcasm from his life. It's been a gift for me to record his transition and evolution, to film him coming to terms with his own life.

I encourage you to continue sharing your experience through this blog, as it allows others to not only share with you, but to be with you in a "safe" but intimate way. Know that the sharing of your journey helps others in ways that you will never know or imagine.

From what I read, you are very brave and optimistic, and I wish you all the best in each precious day. It may sound odd to anyone who hasn't had cancer, but my friend Jack says that cancer has been the best thing that ever happened to him. What I interpret in his words is that he has found a way to enjoy every moment, every day. I know from your words that you have too, and I send you all the love I've got. I hope it comes as comfort to know that you are loved and supported and thought of by people from afar. People who have never met you.

Thank you again for sharing and inviting others to share with you.

Your cousin,

Carrie Gant

Julie D said...

Dear Emilee,
Thank you for your blog. I hardly know what one is but it was great to have yours to navigate (I'm pretty computer illiterate). I've kept up with your progress from your parents and others here is Stockton from time to time but it is great to be able to send you a message personally.

Please know that Don and I have you in our hearts and pray for you daily. You are fighting a very courageous battle and you are an inspiration to us.

I remember and admire your sweet disposition and quiet strength from your teen years and I'm happy to see from your photo that you still have a smile that could light up the room! Keep using it.

Love you,
Julie

Corrine said...

What an amazing journey you have been on, my prayers go out to you as you go through these sets of trials. Glad you are able to share your story with others.

(ps I am Dina's friend.)

Unknown said...

Dear Emilee

I am not sure if you remember me or not, I was your Dad's travel agent here in Los Angeles, I want to tell you that Heavenly Father loves because you are the daughter of him. Also: what you are going through is only temporal, I have confidence that you will recover from it with all the high tech nowaday, you will soon be recovered. Once you are well, I will offer you a great deal to Hong Kong again. In the mean time, lots of love to you and your family.
Bill Kwong/Gala Tours

Nick said...

Been great and uplifting getting to know you through our 1st ward association.

Thank you for not letting any of your negative feelings
(if they existed) ever surface.

Happiness always seems to be a big part of you.

Thank you
--Nick

Loverock_MD said...

hello... it's interesting to read your experiences.. thanks so much for sharing.. so, what happen now? does the cancer is reduced?

Ann Marie said...

Hi Emilee,
Since I'm back at school I have not one minute for word puzzles but every time I look at my puzzle book, I think of you and picture you solving puzzles as you watched your boys swim.I think of you frequently. You are always in my prayers.

I'm glad that you have a new doctor who is taking good care of you. It is so important to feel that you are heard and given proper attention. My feeling with my cancer was that normal is underrated and that is what you are aiming for now,normal. Sounds like you get it occasionally. When you need to, just lie back and let people do for you. Your body is doing hard work on the inside! Just visualize the drugs killing all those nasty cancer cells. Think happy thoughts.
Ann Marie Pierce

Karen or Lee said...

Emilee,
Your parents have been our friends from Stockton for a very long time. We have moved to Boise to live nearer our youngest children. What a struggle you are enduring. I know you know the gospel principle of enduring to the end, and you are bravely doing that, with the help of our Heavenly Father. It remains one of the great mysteries why some very good people have to endure hardships beyond our imagination. Know that many prayers are being given on your behalf, in areas you don't even know. Your name dots many temples, beyond your knowledge! It will be the Lords will, but you are doing your part. We pray for your struggles and relief from your pain.
So glad you have a new physician who connects with you.
Lee and Karen Adams

Peter D said...

Emilee,

Thanks so much for writing on this blog and telling your story for all to hear. I appreciate being able to hear your perspective when so much has reached me second hand.

I just hope you know how many people love you and pray for you. Just remember that I'm one of them.

Peter

Anonymous said...

Dear Emilee,
I thought that I posted a comment a few weeks ago, but it doesn't seem to be here. I'm still learning how to use this whole "blog" thing! I know how to email all my kids, but that's about it! I've so enjoyed reading your many comments and feeling your sweet spirit, in spite of your trials. I remember what it was like thirteen years ago when Bob was going through his tongue cancer. He was much like you, never complaining and always taking a day at a time. He taught us right up to when he "graduated from mortality." We still celebrate his "graduation" every December 30th! I know the peace and comfort that comes through the spirit, truly gifts of the spirit. I know your family feels that same peace and strength. You are in my prayers. I hope you are able to manage the pain so that you can continue to share precious experiences with your husband and three sons. I'm sure that conference meant a lot to you and that you received additional strength. I love you.....
Faye W.

Carin Davis said...

Emilee,

I am a family friend from the San Rafael stake. Tiffany sent me a link to your blog. I admire the courage and endurance you have!!!! I will be checking in on you- and praying for you and your family!!! Keep up the great fight!!!!