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Lea’s Story

I was diagnosed on 1/10/06 with CML leukemia and it was the biggest shock of my life. I was diagnosed with white blood cells at 311,000 (normal range is between 5-10K) and a spleen 5 times the size it should be. At that time I thought there was a chance I could die.



I was immediately put on Gleevec at 400MG. After meting with Dr. Druker in Oregon my Gleevec was increased to 600MG. I never reached a cytogenetic response and was increased to 800MG. As of November 2006 I lost my response to Gleevec and was switched to 140 MG of Sprycel. While on Sprycel I experienced low platelets and low ANC (immune system). I was put on 100MG in March since I was having to take constant breaks from the drug due to low platelets. We had a bone marrow biopsy on June 21, 2007 and 20/20 cells were still PH+ (leukemia cells).

The past 18 months plus have been a roller coaster. I have never experienced fear like I have from this disease. That fear has turned into an acceptance of the disease and knowing that I will survive.

This journey has not been traveled alone. My husband Billy has been there every single step of this with me. There really is no break from cancer and he has never asked for one. He is the only one who physically lives with this cancer everyday and I often think it might be worse for a caregiver. He has risen to each occasion and has brought me laughter, hope, and of course the daily frozen yogurt that seems to comfort me in any situation. I am so lucky to have truly met my soul mate and the person that makes me the happiest and brings out the very best in me. This disease has tested our marriage and our love and we truly are closer and more connected than ever before. You are my angel and I feel like the luckiest woman in the world to be with you.

My mother and my brother (Hoagie) who I talk with multiple times a day are my sounding board and support. They have known me for 34 years of my life and have been instrumental through this as well. They have been by my side and I have felt them with me even over 3,000 miles. I love them so much! My mom's frequent trips out West have been highlights since there have been times when I have not been able to travel. The fact that both of them have been in my oncologist's office and have seen that reality is truly being there for a cancer survivor. My sister in law Christine has been a wonderful source of strength as well. My dad has called me after every doctor's appointment or weekly blood test to check in with me and offer his support.

A special thanks to my in laws who have welcomed me into their family and have reached out in ways that are beyond my wildest imagination. I am grateful to have all of them in my life as such forces of laughter and love. Amy and Susie, I am so lucky to have the feeling of being truly connected to such amazing women. My friends and extended family have stuck by me and our friendships have evolved. My lifestyle might have changed but the core foundations of the friendships are as strong and tight as ever. I am grateful for all of your emails, phone calls, and patience as I give each of you mini lectures on blood counts and lab reports.

My on line CML friends, Anjana, Roy, Lottie, Marisol, Dave, and Gill thanks for being there and offering me such wisdom and hope. There are many other CMLers from the Asian CML list that have been so caring and I appreciate you all.

My doctors are an all star team. I wanted the very best care and I have received it. Dear Carolyn, thanks for your patience and encouragement to make me the most informed patient I could be. My doctors have emailed me in the middle of the night and over weekends to answer questions and bring me a sense of peace.

Lastly, my little yellow dog Kimo, thanks for never leaving my side and always making me smile! I can not wait to return to you and begin a "new normal" life with you and your dad in our home (the nest).

Latest Journal Update

Gratitude and Lucky number 7

My favorite number is 7.  There is something special about the number but especially this year as I approach my 7th YEAR CANCER FREE!!  My true transplant date in 12/12/07 but there is something about Thanksgiving when I feel choked up with true and sincere gratitude for the past 7 and 41 years.  Yes, I relish the fact that I am blessed to get a year older.  There are way too many that have not been granted the gift to age, see children grow, experience another day, overcome another challenge, see so many more sunrises and sunsets.  Damn, I am a fortunate girl to be where I am.  

The past 7 years have been wonderful as we added another dog and two beautiful children in our lives.  But on the other hand they have been hard and certainly not carefree.  They have been riddled with health scares, at times daily doctors appts at UCSF, day long infusions for a year of a 5 hour process of taking blood out of me and returning it to me, thousands of dollars for glass contact lens that health insurance does not cover but I no longer produce tears and cant see without them, getting photo light therapy three times a week to combat my chronic graft vs. host disease.  Scary ER and ICU stays, entering into new groups like "high risk skin cancer group" since post 5 years transplant I have a 20 times higher risk of getting squamous cell carcinoma, and already had a few removed although I am completely out of the sun.  

The prednisone is the devil drug that has both saved my life with gvhd and has disfigured me in many physical ways.   To be on it for 7 years, ranging from 120 MG now down to 8 (yippee), has been a roller coaster as it plays with the healthiest of minds and souls.  It can truly change a personality and complete appearance,  an antibiotic everyday, anti viral, anti fungal, immunosuppressants which makes each winter with a preschooler and toddler a living nightmare constantly getting infections and put on even more antibiotics.  I have had countless transfusions and it's still very much a part time job.  But my other job is life and living!  I get to be a mom to 2 fur babies, 2 very healthy happy kids, a sister, a daughter, a wife, and aunt (yes, I get to be an aunt again in a few more weeks congrats Amy and Mark!), a friend, and hopefully a hopeful "success story" for those battling their own issues and illness.

So, it is now that I sit and reflect again on the past 2,500 plus days of all of your loving phone calls, friendships, visits, support, understanding and most importantly NEVER GIVING UP ON ME!

For those of you reading this site heading into transplant is it worth  it?  You bethcha; especially when looking at the only alternative:).    Is it the longest and at times scariest journey I have ever been on?  Oh yeah.  But here I am, literally sitting in the Dominican Republic about to celebrate Thanksgiving island style with part of my family in paradise.  I then get to hop on a plane and come home and celebrate more Holidays with my Bay Area family.

I would not be here without Tammy Hale.  She gave the gift of a lifetime when grieving her own losses.  To say she is an angel she would come up with a very smart comeback but she is.  I love you and you have saved my life over and over and my friends and family.  You are brave, a true example to Zoe, and a wickedly (yeah Beantown) funny woman who is as sharp as they come.

To my brother who is now in the Bay Area, Brian and has been in too many ER and ICU rooms with me, it is so comforting to have you in the 415 area code.  You show up when its dark and dirty along with Malia on every level everyday of my life.  My very first best friend in life.  My mom who on a moments notice has come out to help with me or kids and at times my nana I could not ask for more.  Billy, who has lived through all NINE years since diagnose, 3 failed oral treatments, a bone marrow transplant, 7 years of post transplant life while supporting our family on so many levels I certainly made the best choice of my life there.  My dad, friends and family frequent phone calls, emails and thoughts are huge boosts of support. 

I feel a tad like Benjamin Button, I feel better and stronger each year!  Granted when you are brought pretty close to death there is only one option to move towards; if granted that choice.  

I sit here and never ever would say smugly  cancer is a "gift".  Its not a gift.  There are true life lessons to be learned in and on this journey but there are much softer and gentler ways to grow and learn them.  For all those who are not here because cancer took them or a loved one too early they would not consider it a gift. The living hell it puts a family and friends through: emotionally, physically, and financially is no gift I would ever want for anyone to experience.

Lucky 7 was my college soccer jersey number and I feel so blessed to be as strong as I am today and seemingly stronger each year.  I thank you all for being there, accepting me for where I am today, what I am able to do, and understand this incredible journey we are still on.  

Go out and grab life.  Just do it.  When lying in that hospital bed 7 years ago, so sick, it was not an earthly possession I cared about as I was content in my tiny room of complete isolation but it were the experiences in life with all of YOU that kept me going.  I wanted more.  I loved my life.  I still love my life and appreciate everyone in it.  Thank you seems trite but appropriate . Have a truly special Thanksgiving!
I love you all!
With love, hope, gratitude,
Lea 
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Comments

13 Comments

Marcia Blackman
By
Dear Lea, You tell the story so eloquently, Thank you so much for putting into words what I have so wanted to say as well. Much love to you and your family, we have much to give thanks for.
Your friend in transplant
ps, 8 mg! I'm jealous!
Janet Chun
By Love, Janet Chun
Dearest Lea,
How do I even begin to thank YOU for battling and persevering and choosing life? I am so proud of you and Billy for making a beautiful, meaningful life for your kids and the pups. I am grateful to your dear donor and to your family. I cherish my friendship with you, my beautiful friend, and always remember you in my prayers. Happy Thanksgiving.
Tammy Hale
By Tammy
Much love to you. Cancer sucks but I'm grateful and honored to know you. Wish we'd met in a happier way.
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1 person hearted this
christie valenzona
By christie valenzona
Lea- sweet friend, I am inspired and overwhelmed by this post. You have persevered through more than anyone could imagine. It is a privilege to call you friend. I miss you and would love to get together very sooon!
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1 person hearted this
William Morrison
By William Morrison
You are a warrior with an incredible spirit for life. As much as you love #7, get ready for #8 because t's going to be another crazy one! Love you, Billy
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2 people hearted this
mike hack
By Mike hack
Wonderful news and commentary, Lea. Thank you.
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1 person hearted this
Jenn Anderson
By Jenn Anderson
You are amazing! You are a truly incredible friend and we are the lucky ones that were granted more time with you thanks to Tammy's gift. You have fought so hard and I c to ue to learn from you. Congrats and thanks for being such an amazing friend!
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maureen buchanan
By Maureen Buchanan
What a wonderful summary of optimism you share throughout your writing. People who don't even know you pray for you and your continuing "success" story. We love you, Lea.
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Suzy Conley
By Suzy Conley
You are the gift....not the cancer...just YOU...and all the wisdom, love and light you bring to our lives!! Love you my friend. Hug your sweet husband for me and kiss those cute babies that someday I will meet! xoxo
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Amy Rabe
By
You are so special, Lea. Your post put tears in my eyes. We are so grateful for YOU and your inspiring drive to stay healthy, despite so many hurdles. Our family wouldn't be the same without your light, love, sweetness and appreciation for the finest nuggets of life. We love your big heart & bright spirit. Hugs to you, the kids, and Billy - we'll miss you this Thanksgiving week, but we love knowing that you're enjoying your much deserved time away together. Love you XO.
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