Monday, December 26, 2016

Christmas 2016

Multiple myeloma....I had never heard of it, until the doctor said those words to me in August 1995 after my first bone marrow biopsy. All I heard were the words: primarily seen in Black males over 65, about six months, hospital on Saturday for surgery to install port-a-cath, high-does chemo. No medical insurance. Who would help me?
I was 37 with blue eyes, blonde hair, already lost both breasts, terrified, lost , confused, and alone. 1995 was my seven-year survival from breast cancer, and the abnormally high protein found in my blood, while testing for breast cancer, revealed yet another new story, a new beginning, or the ending of my life.
As I sit here this morning, with tears, my hands on my head and crying in my breakfast after reading this story of Stottlemyre, I don't recall I had any words then, nor do I now, for what my mind was thinking on that Friday morning in August of 1995. More than likely I headed for the closest bar, the VI (Village Inn) on Balboa Island.
Danielle was 12, my court reporting business was more than thriving. I was living on Balboa Island, office on the Island, working at my dream job, owning a business, basking in the sun on the east bay front. After six years in court reporting school, a divorce, child-custody battle, two severe car accidents, and breast cancer, my life was moving forward and happy. Finally !!! I was celebrating seven years of surviving breast cancer ( for two days) --- then that phone call came at 5:00 p.m. to my office that the doctor needed to talk to me now!
I have worked since age 11, full-time in high school to support living on my own, and I loved being a waitress. I survived my childhood, a story in itself. I am worker. I have always loved to work. My dream of being a court reporter came true. I loved my job and I was able to support my daughter as a single mother with zero help from her father. I was never able to get medical insurance after breast cancer, denied by every insurance company, and so grateful for the five generous doctors who treated me for free for those seven years and had chemo donated to me from drug companies! How would I fight multiple myeloma?
I had just lost a good friend, Alan Tilly, to Ewings Sarcoma at age 24 that February, 1995, of bone cancer, not to be confused with my bone marrow cancer, multiple myeloma (or blood cancer)...He was a fighter and how I miss him. If you offered me my past, without cancer, without knowing Alan, I would have to decline. Thank you, Alan, for giving me the fight.
My remission of 23 years has ended, and my new fight has begun.
I have danced this cancer dance for many years and I have plenty of dancing shoes.
The holidays, I know, should be a time of celebrating, so can anyone tell me why they are very difficult for me? Is it emotions? Is it the over-whelming gratitude? Is it the sadness for the too many friends I have lost to cancer and alcohol? Is it the loss of my mother? Is it the loss of my father, who is still living and I just never got to know him?
Celebrating holidays, as I see it, is for normal people, whatever that is, I just know it is not I. Maybe it is all the alcohol involved in these celebrations that makes me uncomfortable? (Yes, that third terminal disease I have, alcoholism). And without being sober, we all know I would not be alive.
I am raw with emotions this morning. If you read the incredible fight of Mel Stottlemyre, you see the word "prayers" many times. So if you don't believe in prayer, then don't ask me why I think I am alive today. If you don't believe in prayer, I hope you don't get offended by my story. If you care to contact my doctors, let me know, they will admit, even non-believing doctors, that their treatment is not why I am alive. The treatment did not work, in my case. Maybe because I was drunk through the entire treatment. My plasma cells were still over 30% cancer after the tandem transplants. Interferon for seven years was a waste of needles in my stomach. Zometa for many years until it broke my femur..who knows? That ended in 2009. Everyone else died, but three of us, Dr. B tells the story. There are three of us that survived similar stories and treatment, as my oncologist recently told me, again. You can say coincidence, if you like, but if you read my prayer journals, I doubt you would. My doctor says he does not know why I survived, maybe luck. We all have our beliefs. But me, I have my gut, my core feelings, my heart, my journals of all these years documenting it all. I know why I am here, do you know why you are here and your purpose?
And if you think it is easy to pour my heart out on my FB, it is not. I am not looking for attention or sympathy. I used to fear what people think of me. It is easy today. They can defriend me if they like my posts.
My wishes for the holidays, and every day, would be that I might share hope, even in a dark time. If you don't have hope, ask for it, it will come. Speak your truth from your heart. Slow down. Journal your life, then go back and read it from time to time. Pray for others before yourself. Figure out why you here and whom you might try to help. Don't judge others, please! We are all doing our best with our story. Your life is YOUR STORY, nobody else's. So don't live another's story, or another's outcome. Make your own! You do not need anyone else to believe in you, only you must do that!
My dear friend, Gregory, tells me to give myself permission to write badly. I am giving it a try. Writing heals me. Writing helps me to breath. Writing turns a frown to a smile. Writing brings me back to what matters, and it is not the turkey, the dishes, or picking up the wrapping paper.
Prayer, gratitude and a 12-step program has gotten me this far. So I won't fix what is not broken.
God bless you, Mel Stottlemyre for your story this morning. You have renewed my hope for the holidays today! Much love to you and your family my MM fighting friend.

Sunday, November 27, 2016

Saturday ride after Thanksgiving!

Thanksgiving 2016

Thanksgiving weekend ends. This time of year is always very emotional for me. (sorry so long, my feelings won't be hurt if you don't read this.)
I am so grateful for life, friends, and family. In 1997 I left a 30-day rehab the day after Thanksgiving. New Directions in Costa Mesa took me in. My doctors told me that I was dying of multiple myeloma, but at that point, alcohol was taking the lead in my demise. My liver was done and I was in the ER at Hoag Hospital.
I had no hope, no medical insurance, no hair, and the list goes on. I called a cab and snuck out the back door of the hospital. Within a few hours, the detox doctor from Hoag called me and was not happy that I left on my own out a backdoor. I told him he was too late. He said they found a place that would take me on a grant, and that was New Directions for Women. The bone marrow transplants might have worked better had I taken care of myself Dr. V told me. They told me to get sober and get my affairs in order, after all, I had a daughter to think of. If it were only that easy.
Surrender has come to me many times on many levels since then.
A fellow court reporter (we went to school together) stayed at my house for those 30 days and cared for my daughter. Christy commuted from Newport to Long Beach courthouse every day. My friend Janet took over my work and the rest of any life I had left, which was not much. I did not see a reason to fight anymore. I owe my life to so many people who had hope for me and never gave up on me. Friends, family and loyal clients, who stood by me and are still my clients today. You know who you are.
That was the start of my new life. Thanksgiving 1997. A friend picked me up three days a week from the rehab and drove me to the cancer center for chemo and interferon. I was in pain in every direction of my life.
My daughter and I have had an extraordinary journey together. I am so proud of her now. That little girl I thought I would never see graduate high school is married with two amazing children. We have come a long way from her throwing away all the alcohol in my house and packing my bag and sending me to rehab.
Danielle Echavarria called me a few minutes ago and thanked me for sweet potatoes, of all things. She sounded so happy.
As a mother/parent, there is nothing better than hearing joy in your child's voice, absolutely nothing. I love you, Danielle. Thank you for never giving up on us.
Happy holidays to all my friends here who continue to love me and Dani and support us.

Friday, August 12, 2016

What is Multiple Myeloma?

Updated: Jul 17, 2009
What is Multiple Myeloma?
Multiple myeloma (also called myeloma or plasma cell myeloma) is a cancer of the plasma cells. Plasma cells are an important component of the immune system and are typically found in the bone marrow.
When functioning properly, plasma cells produce a variety of infection-fighting proteins called antibodies, or immunoglobulins. When a person has multiple myeloma, however, their plasma cells begin overproducing one type of abnormal antibody. This antibody is referred to as a monoclonal (M) protein. Monoclonal proteins cannot effectively fight infections. In addition, the growth of myeloma cells may inhibit the production of normal blood cells, and therefore normal immunoglobulins, due to overcrowding of the bone marrow.
As abnormal plasma cells proliferate, they may form tumors called plasmacytomas. Plasmacytomas can be found wherever bone marrow is active, particularly the rib cage, the bones of the shoulder, the hip, and the spine. They may occur in multiple locations at one time, which is why the disease is called multiple myeloma.

Thursday, June 16, 2016

June 16, 2013 - Father's Day Post -

Bitter/sweet Miracle Father's Day - today I wish my father to find peace of dad is an alcoholic...
My father is 75 and I have not seen or heard from him for most of my life, maybe a handful of times, that I can remember. My daughter does not know him. He is the eldest of 10 from a small town in MO.
This morning I called him before leaving for my bike ride, and we had the best telephone conversation I have ever had with him. My dad is an alcoholic. He had a massive hear attack in TN about a year and a half ago and the doctors told him if he continues to drink, he will die at once! His heart cannot take it anymore. He did stop drinking. My father was never able to show up in my life. I don't fault him for this and I don't judge him either, not a bit.
When I was battling cancer and was told I was going to die, he never came to see me. I was hurt, but I also understand the disease of alcoholism and I knew that he can only do the best he can do. You cannot do much when you drink beer all day. He did say he never drank in the morning, started at 2:30. lol
This morning, he said things to me that I have wanted to hear my entire life...things like: "I don't drink anymore."
"I feel so great after not drinking for that last 15 months, I could jump up and down, but I am too old to jump (laughing)..
He went on to say: "I wish I would have quit ten years ago-- no, I wish I had never started....he said, "all my life I have been a drunk and never been a dad...they should have taken me out and shot me" (well, I didn't want to hear the shoot me part) --
I am heart broken for the guilt he must feel because he missed his life and he missed my life. He is correct. He was never a dad to me. He lived his life in a beer can. I cannot fix or change other people.
I certainly don't want an apology. I just want him to find peace and know that I have loved him as much as I can love a stranger in my life. I am sorry if this seems sad or inappropriate today, but, hey, it's my FB page...he and I laughed a lot --- and he understood me and his speech was not slurred.
And this is good news in my life.
He called me after my last race to see how I did...I was floored! He could not come to CA to see me when I was in the hospital having a bone marrow transplant. I did not know what to think, when he remembered I had a race? He says he wants to move to some small place on the TN river and fish and not drink. He seemed happy and yet regretful. He is all alone and cannot see or hear well and quite ill for 75.
So I cried with happiness that my dad is sober. It takes what it takes. I told him I hope he can spend his remaining years sober and fishing and playing in his little farm, weeding and being a red neck. ;-)) --I believe in miracles even more than ever after my Father's Day phone call. I am the eldest of five.
Maybe it's time to make a visit to TN and see who my father really is?
Sorry this is so long....but it's a big event I have been waiting for since I can remember.
Night FB friends.

Sunday, May 8, 2016

Mother's Day 2016

Thought I would make it, but I did not. It has been six years since I have seen my mother. I miss her. Every year I simply break down in tears while thinking of how tough her life was. If you know me, then you know my nickname should be "hard worker" - But Mother made me look like a slacker. She worked two jobs to feed five kids as a single mother most of her life. I used to be a cashier when I was about 12 after school at the Earl's Bar & Grill on Broadway in Santa Ana, where she was a coffeeshop waitress. While I was in high school we both were serving coffee and eggs at the Parasol Restaurant in the Orange Mall. I worked 2 to 10 after school on weekdays and 5 p.m. to 4:00 am. (yes, 11-hour shift) on the weekends (dinner and bar-rush tips) ...I miss rolling our quarters to pay the rent. She was only 16 when I was in the works, so we were more like friends, than mother/daughter. I used to resent that. Now that she gone, I understand more and more how much we needed each other and I miss her needing me. I moved out at 15 with a fake ID and got my own apartment with a roommate.
I have worked since I was 11 years of age (you could lie back then about your age) from DK Donuts to Earls, Denny's CoCos... Mother did the same. She finished nursing school in her early 40s.
On this day, my wish is to say THANK YOU to my mother for teaching me to stand on my own two feet! My fight with cancer twice was a fight that must have been in my DNA from mother. I never gave up, and neither did she.
The darker demon I fought was alcohol, something my poor mother was tortured by all her life. If she did not marry one, live with one, or give birth to one, she was surrounded by alcoholics. And I cannot imagine how tough it must have been for her to wonder where I was, dead or alive. My early years I watched her being beaten up by an alcoholic for her car keys and wallet. But she would do anything for her kids, when she could. I would climb out of the window and use a neighbor's phone to the call the police. But it never stopped. The fighting, the blood, her tears. Police could not do much.
My mother ran way from an orphanage when she was in high school in a small town in Missouri. Happiness was a dream she always chased. I guess that is why she loved Christmas so much...her own little fantasy of lights, and cookies, and laughing kids near a tree (or two) lol..
This one day a year, I cannot help but wonder, as my tears won't stop falling, if she ever found that happiness?
Maybe this is why on holidays I feel more comfortable working and being alone. Maybe this is how I am still with my hard-working mother. I am just okay with that.
I found happiness in my family, riding a bike, and having a career I absolutely love. I am so blessed. Mother always told me I could do anything and she was proud of know what? She was right!
So if you wonder why I work so much or why I like to ride my bike up mountains until my legs are falling off and I am ready to puke...well, as my good friend AJ Sura says..."because I can" - (non-edited or proofread because I do that for a living) If I dropped a word, you can read between the lines...because this is my heart on this page, not about a typo -:)
I love you, mother, and I am taking your ashes to Europe me in July, because you never got to go there!

Sunday, January 3, 2016

New Year's Eve 2015 - Mountain bike ride up Westridge and some single track

This is my first ride in several weeks.  Felt great to get out.  Mountain biking is where I find peace, hummingbirds and butterflies.  Riding in the mountains, I can visit my friends on the other side.

2015 Christmas in Big Bear with Danielle and the kids - Saw Grandpa Dayton!

Thank you to my good friend, Eric for allowing us to use your cabin in Big Bear for four days.  The kids, Noah and myself went snow tubing and had a blast.  It was 18 and windy the day after Christmas, so no fat biking for me.  Danielle and I had a wonderful time with Dayton and took the kids to meet him. He will be 87 this year.

Some of the photos of our white Christmas!

June 2015 Jessica worked at the office and this is flying off to Portland to Brihanna's wedding! Best summer ever!