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).
Almost 6 years cancer free- what a ride the last few months have been!
Dec 7, 2013 11:00pm
Happy almost 6 years cancer free to US (yes, all of you that have loyally been following me for over 6 years)! I feel as though everyone reading this has been on the cancer, transplant and GVHD train with us. Your never-ending support, love, and comments have gotten us through yet another year,
The year started off with yet another miracle in our lives;the birth of Katherine Marie Morrison on Feb 21st of 2013. She was welcomed with open arms and hearts by big brothers: Henry, Kimo and Hutchie along with our loving family and friends.
I was able to taper my prednisone down to 12.5MG, which is the lowest I had been at since I can recall. My bi-annual trip to Seattle in September was wonderful. After meeting with post transplant specialists and every inch of my body examined and tested they confirmed what I already felt, “this is the healthiest you have been since transplant!” I was thrilled I had spent the better part of the year receiving ECP treatments every Friday that took about 6 hours where they literally assigned you a one to one nurse and took large amounts of your blood out and exposed to UV lights. Seattle believed I could stop that, asit seemed to have taken me as far as it could in sparing the steroids anddecreasing those awful long and short-term side effects.
Now it’s October and out of nowhere my platelets come crashing down. These are the cells that allow you to clot. I was at Henrys soccer and my gums had huge massive bubbles of blood in them and I had bruising all over my body, Scary. Well, they were thinking that I had ITP, which is something that can come on after a respiratory infection, and your body destroys its on platelets which is quite scary as any cut or accident could lead to bleeding to death. But they had to rule out first what it was not. They had to rule out that the CML had not returned nor had I acquired a secondary cancer that manifested in my bones. They were serious and it was scary, they wanted me in the next morning at 8AM for a bone marrow biopsy (I have not needed one in over 5 years) but that would be the true test if the CML or other cancer was present. Never in my wildest dreams would I think I would be hoping for a platelet disorder that destroys my own platelets over another cancer DX.
Luckily, it was not cancer returning and looked more and more like this ITP platelet disorder. They first tried putting me on super high doses of prednisone. I am on immunosuppressants anyways which limits my ability to fight infection but adding the high doses of prednisone for weeks/months makes me a walking target for all sorts of nasty diseases.
A Thursday night, unlike any other, I went to bed early and felt run down. Both kids and Billyhad been sick. But I have cared for all of them in the past and might have picked up a minor cold or infection. But this night was different. I was freezing and made up about 4 popcorn bags to keep me warm in bed, then sweating, and then I got out the thermometer. Already it was close to 100 degrees. I knew I had an appt the very next morning so all I had to do was make it though the night and get to UCSF in 8/9 hours and they could deal with me then. The sleeping pill was right there, but I knew this was different. I began to shake from freezing cold to blazing hot. I crawled up the stairs to where Billy was watching TV (Both kids asleep) and told him to call 9-1-1 immediately and no sirens, as I did not want Henry to witness this trauma. Instantly 6/7 EMTs were in our home. I demanded to go to UCSF and they were getting me set upwith IV lines immediately as my vital signs were dangerously low.
We arrived at the ER. In the meantime, Billy called my brother and wife. Brian met me at the ER and Malia and his dad stayed with him to help with kids. I was in the ambulance solo. It was a huge relief to see my brother there at the ER even though it was the middle of the night.
They worked fast and furious. They cut into my neck to start new IV lines and bloodstained pillows were being tossed everywhere. I desperately wanted water but they refused as they thought I would need a ventilator or feeding tube and would choke on any fluids or food. My blood pressure dropped dangerously low where they had to put me on two pressers (scary stuff) to keep me from bottoming out. I had atleast 7 different lines in my body. Billy called my doctor at UCSF on his cell and not only did he pick up but was able to give a full health history to the attending in the ER. It was beyond frightening to hear “her kidneys just took a hit.” Overhearing them ask my brother if he would donate one of his own. I think he would have done the surgery himself right then and there if needed. I was in the ER for 12-15 hours before I was even allowed to go into ICU.
Billy worked on getting my mom out on the first Saturday flight out to help not just the kids but also the dogs, Billy, and me. She came directly from SFO on Saturday and met Billy there. Billy was unable to see me as he was on antibiotics himself and I was so incredibly compromised it was not allowed for the kids or any non family members to see me.
I thought I had even more to live for now with two dogs and two kids and my friends and family have gone through so much. It was determined I had septic shockand pneumonia. Really really scary considering how compromised my immune system was. My brother, did I mention he had 2 broken ribs from a bike accident earlier in the day?, sat on the ER and ICU floor for over 15hours. Bit by bit I was getting better. After 2 days I was put in a regular hospital room. I had to take a walking test to determine which oxygen tank to take home. I think its all the hiking in the Marin Headlands with my fur babies but my oxygen was too good for them to send me home with any!
I share with you this narrative because I don’t think I havethe words or the distance from the event to express how incredibly scary this was for all of us. My mom stayed on to help me transition, friends from my hometown rallied and put together care packages, sweet special dinners were made and given for us. It was the first time in 6 years I was in-patient. I hope never to return again any time soon.
They rapidly decreased the prednisone and I had 4 weeks ofRituxin infusions (which has part mouse in it and is like a chemo) and I tolerated it quite well. My platelets this week and last week have been in normal range. I have no idea if I will need more maintenance doses in the future or not.
What I do know is I am lucky, blessed, fortunate to be alive. Modern medicine can get a bad wrap. I will tell you that with out it I would not be here writing to you all with gratitude and eternal hope.
My family, friends (both near and far), team of health professionals have saved my life yet again. It is a huge reminder to us all to be so grateful for today and the blessings you have in your life! We can only stay present today and have no idea what tomorrow will bring. I urge all of you to take your health seriously and had I waited until the next morning and taken that sleeping pill knowing I was going to UCSF for a scheduled appt I would not be alive today.
Be an advocate for yourself. Believe in miracles. Count all the amazing things you already have in your life! They are more than enough.
As I approach my 6th year rebirth day I also want to thank my donor, Tammy who came out to visit me. She was able to meet my kids, dogs, mom and nana. Brian had met her years ago on the EastCoast. I truly love her and the entire time she offered to give me platelets if I needed them directly from her. She still gives blood regularly. Without her my life and so many other lives would not be as rich or hopeful. If you for some crazy reason are not registered please swab the inside of your cheek with a q-tip and follow the directions on : www.bethematch.org
I don’t have any appts until December 13th. It seems that the Rituxin helped my platelet issue at least for now. I truly hope you have a fantastic holiday season. BELIEVE!
With love and gratitude,
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