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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

Crazy 8 (years) cancer free

WE (and I use that pronoun with special emotion in caps) are going to be celebrating 8 years this Saturday because of my amazing donor Tammy and her super power cells.  I have been cancer free for 8 years.  I remember I just wanted to live long enough to be a mom to our new puppy Kimo who just celebrated 10 years last week.  He truly made me a mom and gave me special purpose in life and completely forced me to focus on the here and now.   My  first oncologist gave me 3-5 years to live (need I say more ALWAYS ALWAYS ALWAYS) get a second if not third opinion even if the Doctor has the best reputation.  Every great doctor's ego is fine if you consult with another doctor.  Let me tell you, they would if in your situation.  Its not hurting any ones feelings; it's making sure you are receiving the BEST care and maybe the two doctors can work collaboratively.  
This post is dedicated to my caregivers, friends and family that trudge the post transplant life with me.  They still ask if its a good day health wise or one that is a tad rocky.  They have never given up on me.  My chronic GVHD is at its best it has ever been and I am at my lowest dose of prednisone and immunosupressants drugs.  We had a scare this spring when my kidneys for 6 months were giving alarming numbers as they have been beaten up on with non stop medication for 10 years since diagnose.  Luckily, after a trip to Seattle, working with new renal dr at UCSF and my normal hematologist at UCSF they are all in "normal range".   No kidney transplant for me at this point!
I had to fill out a medication sheet last night and I still am on 20 (yes, that is not a typo) medications for my chronic GVHD..  Chronic cGVHD are like auto immune diseases all over my body where the cells are fighting each other and causes inflammations.  So, pretend you had lupus, irritable bowel, dry eye, dry mouth, glass 20K lenses in your eyes because you no longer produce tears and are blind without them, psoriasis and a host of other issues going on in your body but no cancer.  Its a juggling act as the prenisone and immunosuppression drugs are super harsh on your body (leads to avascular necrosis, disfigurement, sleep issues, mood disorders, shakiness, and the immune system of an HIV patientt or newborn baby,  I take mediation daily to protect me from that,  Everyday I take two antibiotics, an anti viral, anti fungal and I wont list the other 17 medications.  I get special light treatment 2 times a week for my skin gvhd at ucsf, I get IVIG transfusions once a month (PLEASE donate blood!) as it takes 1,000 different peoples plasma for that one infusion, red blood cells as I'm always anemic, I see a high risk skin cancer group doctor, get paps twice a year and at a 20-50 times more likely to get a secondary cancer due to the chemo and treatment used in my bone marrow transplant.
With all of that, I am lucky, blessed and grateful.  I will NEVER EVER say "cancer is a blessing".  I've lost way too many friends along the way and watched families destroyed financially emotionally and physically by this disease.  Those who have passed did not "lose" at cancer.   They did not try "less" than me.  They weren't loved by friends family or a higher power any differently.   Cancer is not a gift I wish on anyone as I sit here smugly writing what cancer is and is not FOR ME.  Sure, there are loads of life lessons forced on you and your family and friends but there are far more gentler ways of learning them without going through this wicked disease,  For those still fighting I feel for you. I fight with you,  We are all a statistic of one.

I seem to have one foot in the suburban mom life and still a foot in the cancer world as I still have 3/4 appointments weekly.  No, I'm not a "normal mom" but my friends get me and my strengths and limitations and I simply don't have to explain myself.  They get it and no apologies needed bdor someone I can not be.
My family and friends have been my life line.   My cancer friends are still a huge source of strength and hope.
I have friends that have lost parents to cancer and other friends diagnosed this year.    I am so sad that they are welcomed to the club NOBODY wants to be a part of.  I want to be with them.  I want the good bad and ugly.  I want to support and be of service.  I want to listen and truly be present for and with them,  Its scary.
I have other dear close friends whose parents are waiting to get solid organ transplants.  Our society has a huge taboo about talking about mortality.  Its frightening, its a hushed topic, its avoided, and it is seen as depressing.  Everyone reading this.  Have a candid conversation and get in WRITING what you would want to do if your life came to a dramatic end.  Become an organ donor.  Make that known in writing and to your loved ones.  Have that conversation NOW when you are healthy and not ill.  I think once you  get beyond the initial shock of opening that conversation as it becomes less taboo and open.  I would donate every inch of me to let another person live on.  Unfortunately, I think my organs are not suitable after all they have been exposed to but I am planning in many many many years for my physical body to be donated to science so another generation might not suffer.
GIVE BLOOD!   You will need it in your life time, your child will or your parent.  Any surgery has blood ready in case it's needed.  Saying "I don't like needles" is not really an excuse,  I have never met anyone in 10 years that "Likes needles".  Find a blood donation site.  Go there bring your  kids show them the true meaning of the holidays and giving of yourself to strangers.  It is greatly appreciated and needed,  Plus you usually get a cool sticker and cookie.
My amazing donor Tammy: no words are left to express my gratitude.  My family (that does not mean by blood as I have a new blood type  and 2 DNAs in me), my friends, and health care providers I am forever grateful.  I love the life I'm living and am so fortunate to be held by so many that never ever give up on me.
To my friends who are fighting and who have lost a parent I love you and keep on keepin on!
Hope, joy, and a magical healthy year to you all.
I love you beyond words!
Lea









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Comments

27 Comments

Starsky Pip
By Starsky Pip
Dear Lea, it is so wonderful to hear how you are doing...your generous and beautiful spirit always shines through your writing. I am so happy that you are still in the fight and that you are able to remain strong with the support of your family and friends. It has been six years since I lost my son, Nickolas, to leukemia after BMT. I would give anything to have him here with me. The pain of his loss is unbearable and yet somehow I keep breathing. Bless you for your courage and strength to keep on battling. Thank you for your words of wisdom and the on point advice you have given about getting second and third opinions, and what people can do to be of service to others who are fighting cancer right now and every day for the rest of their lives I hope you have a wonderful holiday season. Would you mind if I posted this on my blog and/or on my FB page? Sending hugs to you Lea, I will never forget how kind you were to me when I reached out to you when my son was sick. ♥ Diane P
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Jen Consiglio
By Jen Powell
You have already donated your huge heart and lovely spirit over and over! Also wishing you much health, hope, joy and magic in the many years to come! <3
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Karen F. Chapman
By Karen F. Chapman
Celebrating with you! 😊😃💕💕
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Lisa Ayer
By
Dear Lea,
Congratulations on your 8 year triumph over cancer. What an ugly beast! I admire you and all you do to keep healthy. The people in your life you who you are grateful for are equally grateful for the beautiful you. Take good care. i am so glad you wrote; I think of you often and wish you only happiness, love and good health.
Much love and have a wonderful, magical Christmas with your loved ones.
Lisa
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Katrina Sharp
By Katrina Sharp
Dearest Lea,
I Love You! You are the biggest ROCK STAR MAMA I know! You've taken on so much and NEVER, that I've known, thrown a pity party! Lea, you continually bring hope to those who've just begun the journey! Your fighting spirit moves mountains and splits seas! You inspire so many and hopefully they will find less invasive drugs to fight the cGVHD. I could go on and on, although I wouldn't be saying anything more that everyone already is thinking... tears of pure joy for YOU, and showering so many blessings on our families, friends, and those SELFLESS DONORS, who have GIVEN THEIR LIVES so that someone else may LIVE & LOVE!
Yes, I love you! Love to ALL your caregivers, family, and cheerleaders! And all those who are in this club, like it or not.
Katrina
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Tammy Hale
By Tammy
As always, I'm honored to be a part of your life. I hope this year is the year you and Zoe finally meet. Love to all of you.
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Diane Barisas
By Diane Barisas
Lea you are such an inspiration to everyone. Your strength and courage with all you have gone through is amazing, and at the same time you are always there for everyone, as you have been for our family. We all love you! Congrats on CRAZY 8!!!!!
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Avery Stonich
By Avery
Lea, you are an inspirational spirit of strength and positive attitude! Thanks for sharing your story. Lots of love.
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Cheryl Thornton
By Cheryl Thornton - SCT Jan 2011
what a joy this was to read today! You are and continue to be one of the most amazing women I have yet to meet my cyber friend. Thanks to Tammy today as if she had not made this wonderful gift available to you, we would not have "met". Congrats Lea - YOU ARE A ROCKSTAR!! and a big HUG for all you did to support me throughout my own transplant - you continue to be an inspiration everyday!!
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Brenda Walsh
By Brenda Walsh
You amaze me! I'm in awe of your strength and courage. Big hugs to you on 8 years!
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