Celebration continues

Still feeling so happy about the remission news...smiles never seem to leave my face. I have gotten phone calls and emails from family and friends. Makes the sharing of good news more exciting. Talked to my brother and sister in law from Puerto Rico several times....wish they were closer want to hug all my family and party it up. I checked the airfares to Puerto Rico yesterday......feeling like a road trip maybe in my near future....
Picture of my brother in law, nieces and great nieces......damn I have beautiful family.

I woke up.....still not a dream

I woke up this morning with my stomach doing flip flops and my head pounding away.....signs of the chemo treatment yesterday. I looked in my purse, and I saw it. The CT results! I was not dreaming yesterday. I AM IN REMISSION!! It was not a dream. It was good news that no one can take away. No one can understand this rollercoaster ride of this journey...been so long that I have heard good news that I still can't believe that I am not dreaming. I want to cry tears of happiness. I want to eat a piece of Chocolate cake from Freeport Bakery! I want to go somewhere warm and celebrate. Would love to go back to Puerto Rico and see my brothers,sisters, Aunts, and cousins. I just want to celebrate! This was not a dream....just a small miracle.....Thank you God!

And the doctor said...............

Today I saw the oncologist before chemo. Anxiety about the results of the CT scan played havoc on my mind and emotions. Smiling to my daughter to put on a brave face was hard with the panic that seemed to be brewing inside me.
When my name was called to see the doctor I almost jumped out of my skin.
I wanted to go alone....easier to digest bad news if you don't have an audience.
The nurse took my blood pressure, startled it was so very high. Told her I don't have high blood pressure just nervous I said. Dr. Wang came in with a smile and a piece of paper in his hand. "This is for you" he said, "Read the results of your CT scan." I just blurted out please just tell me....He said very good news.....No NEW GROWTH! The CHOP CHEMO seems to have shrunk the tumors and they have not grown back. Your lungs are only showing residual cancer but overall things are good. The cancer in your pelvis has come back but we are not going to worry about it since the cancer in your lungs, spleen and stomach has shrunk.
I want to go home and celebrate....but he says lets do a maintence chemo to keep the cancer at bay....this is not meaning you are cancer free but you are in remission. REMISSION....what a wonderful word. The prediction of 3 years ago that I would only live 3 years is now just a joke....with the help of a new doctor, a push for more aggressive treatment and a bit of hope with lots of faith I am in REMISSION...Chemo today with its side effects are happy things, and are not dreaded......I want to celebrate.....I want to dance like no one is looking.

4am

4am and sleep has left me. Not sure if it is the fact that I am going to the Oncologist today and beginning on Chemo or just the fact that the house seemed so warm that I woke up. The Women of Color event is coming up and since I am a honoree....and poster designer again I have had to actually do some art work. I keep thinking about the event and their theme of Women who have overcome obstacles and have soared. Have I soared? Not sure, I think I have had moments of hope, moments of worry, moments of questioning all that I thought was real. My faith has been tested as well as my friendships. I have had complete strangers step up and offer help or open doors...sometimes I walked through the doors. I have been lucky that family has played a big part in my life, but even those relationships have changed. Some family becoming closer, some roles have been redifined. Sometimes I walk on egg shells so that I do not disturb the balance of things....Not sure if I have soared....I think I have just survived and at times have thrived but sometimes I have stumbled and looked for a hand to help me up. Thank you to those who have extended your hands...I am extremely grateful.

Chemo tomorrow

I had a CT scan yesterday, gave blood today and tomorrow I have Chemo begin again. Lots of worry of what the CT scan showed.....how being off Chemo for a month and a half has allowed the cancer to grow again runs through my mind. I can feel tumors in my stomach again so I know there has been some growth. I don't fear the Chemo, I fear the side effects. The upset stomachs, the bathroom problems, headaches and the lathargic feeling that comes with the treatment. As the the tubes are hooked up and the toxins drip into my blood I wonder where I am in the grand scheme of treatment. There is no cure, but there is hope....
Sometimes hope is hard to have when you are in the middle of this. Tough time being hopeful when you hear bad news.
My picture was taken today for a press release for the upcoming Women of Color. I am a honoree this year.....they are honoring women who have soared over disabilities. The photographer said that I project a lot of positive energy...funny sometimes I don't feel that way......Life goes on.

Hard to say

Do you always say what is on your mind? Who do you share your intimate thoughts with? As a mother do you share only half of whats going on with you with your children? How much do you tell your friends on tough days? We all have turmoil and difficult times but I guess there is a time for sharing overloadl, when telling too much of what is going on that perhaps it is hard for those you love and cherish to take in. The masks come up and you hide behind the fascade of everything is ok because you feel like a burden. I don't know but I write to help purge some of my demons, and I have shared a lot of what the ups and downs this journey has been with those around. The feeling of being "Debbie Downer" always haunts me now. I guess it is hard to know what can be shared before you feel it is effecting relationships. I don't have any anwsers....but open to some.

What Cancer Cannot DO

I had Christmas with a friend yesterday. She took a photo at the coast and found this poem to put on it. It made me cry. The photo above is mine, the words are hers:
What Cancer Cannot DO

It Cannot Cripple Love.
It Cannot Shatter Hope.
It Cannot Corrode Faith.
It Cannot destroy Peace
It Cannot kill Friendships.
It Cannot Suppress Memories.
It Cannot Silence Courage.
It Cannot Invade the Soul.
It Cannot steal Eternal Life.
It Cannot conquer Miriam's Spirit.

Powerful words......some truths....and like I said they made me cry.

My brother

My brother raised me. When my father died my mom could not take care of all the kids and he was newly married and took me and my younger brother in. I was 12 when I moved to Oregon and left when I finished college from his house.
He was in his late 20's when he took on the role of father for me. He recently moved to Puerto Rico to retire from Oregon. I miss him so much and we talk on the phone more now than when he was closer. His bad jokes and endless laughter carries you through on bad days and makes for sweet memories on great days. He bought every car I owned until I got married. Never complained each time I wrecked the cars...just replaced it with another. I learned a lot about parenting from him. He never raised his voice or a hand to me. If I did something wrong the look of disappointment on his face was enough to never do anything bad. Brother/father figure, he holds a special place in my heart.

Trouble Sleeping

It is 330am and I am wide awake. The temprature is about 29 degrees and the house is cold and hot. The heater was on the hot air from the furnace fills the bedroom making it hard to sleep. Yet when you come into the living areas and the tile rooms are cold. I sort of like the cold because I can bundle up but there is no escaping the heat. I went to the doctor the other day and discussed my overall health......the picture has not changed. I have about a week before chemo starts again and the feelings of dread are starting to set in. I have enjoyed not having the side effects and being able to eat salads. The restrictions are so many when you are on chemo and the simple thing of having a salad is missed. Every thing must be cooked and cleaned throughly. Everything must be disinfected. Hand shaking or being around children and animals are to be avoided. So many restrictions it is like living in a bubble. The smell of clorox and disinfectant will again be constants in my world.
For some odd reason I have a saddness building up in me. Old rifts are being rehashed in my head. I have found that I am living behind a mask. I found out the hard way that telling too much of how you are feeling is overwhelmning so a brave happy face must be put on so not to disrupt those around you. When asked how you are feeling......no one really wants to know the truth. It is not pleasant to say what is really going on. So the brave happy mask emerges.....only to hide and keep the secrets that churn in my head.

Does that high school feeling ever end?

Do you remember being in high school and being picked for teams? You never wanted to be the last one picked and you always wanted to be included in all the plans your friends were making.
When I was in high school I can remember the feelings of insecurity and hurt if I was not invited to big party or cruise event. Nothing hurt more than to hear about how your friends did something and didn't include you. Then you grow up and you become an adult and those feelings and insecurities go away right?? I don't know about you but I still feel insecure at times.
I have had the same core base of friends for over 20 years....they have seen my children at birth to graduating from college, as I have seen theirs. I have dropped things at a moment's notice to go help them out in their time of need and most have been here for me in my times of need.
There is a poem about friends that some friends stay in your life for a season than they move on, I never had that until this last few years. My core base of friends stepped up when I was diagnosed with cancer offering emotional and other support. One friend pulled away. My phone calls and emails went unreturned. I knew this friend had a busy life, and attributed the lapse to a overwhelmning life and perhaps not being able to handle the chaos of my life.
The other night a call came in.......the caller ID said it was my old friend. She was calling to invite me to her birthday celebration. I felt like I was being invited back into her life......we chatted but there was a void. I had gone with another old friend and when we left, we talked about the evening. It was shared how an ivitation to go out to dinner and dancing was extended. The old feeling of not being picked for a team from high school suddenly kicked in. I was not invited.
Insecurities of not being good enough, maybe too fat flooded my mind. The friend went out and called to say what a great time was had. I again felt hurt. My friends are not connected at the hip and are free to do and go anywhere.......but that old high school feeling kicked in. I was not wanted. I guess insecurties never leave. They just change the way you process them.

my Puerto Rican Family and Christmas Sunrise

Sunrise on Christmas morning. It was peaceful to climb to the top of the boat with the wind in my face to capture the sunrise on Christmas morning. I heard a saying the other day, which I like very much. It goes " Your love is like the wind, I don't have to see it to know it exist." I am grateful for the love of my daughthers, family and friends. Even when there are disappointments I know the love still exists. Having love in your life is a wonderful thing.

Friends and Family

It has been a while since I have written. So many excuses from being exhausted from chemo to plain laziness. I have missed writing my thoughts and wondered if anyone missed reading them. The holidays were different and special this year. I am still struggling with the loss of my mother and again this year did not want to continue the tradition of hosting Christmas at my house. Over the years the celebration had become so large that there literally was not room in the house to hold all the people that came. My mother was the grand dame in the celebration with all the grandchildren visiting her paying her respects and praising her stuffing and rice. Since her passing I did not feel like I wanted to have Christimas and for the last two years we have gone away. This year we went on a Cruise and our first stop was Puerto Rico. I was so thrilled to see my family waiting on the Pier. My brother,Sister, Aunts, nieces and cousins, unfamiliar faces to my daughters but a bond that existed through blood that could not be broken. Too little time to truly catch up and visit but it will forever be a memory that will live on in my heart. I wish we lived closer for those bonds of family felt good to reconnect. Seeing my aunt who looked so much like my mother was wonderful and bittersweet. It made me miss my mom so much more.
My sister and her family were wonderful. It is funny how I can have a niece that is my age with a loving heart and a sense of humor that is amazing. I can only imagine that we would be good friends if we lived closer. I am grateful that I have them and my daughters got to meet a family they only heard about.
Seeing my brother in Puerto Rico was hard. I miss him and his wife so much since they left to live there. I worry about them dealing with heat after living in the cold for so long.
I had to send in my medical records to my employer to continue my pension.
I made the mistake on reading the doctors' notes. On one page the doctors comments was that I was so calm when he told me I was closer to death....
I don't think I was calm but accepting, for the voice in me still shouts with anger about this cancer....I still feel the hopelessness but put on a brave face to the world. I begin chemo again in a few weeks after being what was termed as a drug holiday. "Drug Holiday" what a silly term for describing a month off from being filled with poisons and toxins that try to keep the cancer from growing quickly. The treatments will begin again......the process of being sick and feeling like a burden will begin again. The brave mask will be put on again.