Wednesday, February 23, 2011

Lessons from Dad

My Dad, Jacob or Jake as he was known, was a celebrity, star in his own world. Funny, kind, positive, he used these qualities as a great story teller, singer and leader at his church. He attracted friends from all walks of life. Once you met Jake, you would never forget him. He was always ready for a good conversation and always interested in who you were.

Despite his positive disposition, Dad lived his life faced with various health issues. When he was a young man, working at San Jose Hospital, he agreed to help a friend move a piano. The piano slipped and broke his back. He was constantly in pain throughout his life from this injury and often had to receive surgery to relieve the discomfort. His life in his later years involved ailments associated with aging. My Dad was basically always in and out of hospitals. It was a way of life.

As a child, I didn't feel his hospital visits were particularly unusual or even frightening. My mother always presented his hospitalization as something normal. We'd go off to the hospital to visit. Once there, Dad always seemed to be holding court: greeting doctors, nurses and other co-workers with a smile on his face. As a child all I could see was that he wasn't frightened by the medical care he was receiving and he was surrounded by friends. Not a bad environment to be in.

As he became older, his relationship with his doctors grew more into friendships with a personal touch given to the type of care he received. My Dad never lost his ability to treat the hospital as his second home. His ailments grew more serious with age but he always had a ready smile and a greeting for a friend.

My Dad lived until the age of 87. He had quite a long life. With my recent diagnosis of Leukemia, I have felt his memory so close to me. There have been times that I physically felt his presence - almost in an embrace. It seems Dad has called on me to remember his strategies of dealing with health issues: face them don't fear them, do what is possible to overcome them, ask questions when needed and make friends with your community at the hospital.

It is my turn to create my community while in the hospital. The biggest surprise has been my ability to "channel" Dad while in the hospital. I know the names of doctors, nurses and other hospital staff. I chat with everyone. I question without alienating and manage to get through various procedures without getting hysterical. I'm a good patient - just as the nurses always said about Dad.

Dad prepared me for this journey. He gave me skills to deal with the multitude of treatments I have yet to receive. He showed me how to be fearless while facing overwhelming circumstances. He taught me how to create a nurturing environment, away from home and in a sterile medical environment. Love and caring exist in many odd places and I'm happy to say that Dad helped me find it here and now.

Thank-you Dad for being such a great teacher. I had no idea there were more lessons to be learned from you even after your departure from this world.

I miss you and love you,

Monday, February 14, 2011

Things are allright.

After all my tales of angst, woe is me, I have to return to the hospital, I'm back here again and it hasn't been all that bad. Its actually been quite relaxing. I've gotten two different dosages of chemo over the past few days with minimal side effects. I guess the anticipation of returning is much worse than the actual being here.

I have a nice, quiet room. I decorated it with Tibetan Prayer Flags (a gift from my daughter Gaby.) I have pictures of my kids, a Virgen de Guadalupe pillow, a heart quilt my mother made. I also displayed a plaque my son Mario made saying, "Not that you need any help BUT...GET WELL SOON!" which is adorable. My daughter's friend Maria brought me some Holy Water from her Russian Orthodox Church plus postcards of a few saints. My friend Ale brought me a print out on Saint Peregrine - Patron Saint of Cancer Patients which also includes a lovely prayer. Finally, I have images of Frida Kahlo. Her difficult life and willingness to endure endless physical and emotional pain gives me strength. She used her art to express a multitude of emotions - some of which I believe we will never fully experience in our own lifetime.

Over the weekend my sister Diane came up from L.A. She picked up my Mom in San Jose and they visited Saturday and Sunday. We watched movies here, had lunch together and just talked. It was relaxing, distracting and just enjoyable. A good weekend for a great family visit.

Friday was my husband Gary and I's 27th wedding anniversary. Who knew? We have a marriage well on its way to 30 years! Since that was my first day back at the hospital, he took time off from work and we had a long lunch together. He went to my favorite Japanese restaurant in the Sunset District - Ebisu - and brought me the most delicious shrimp tempura and fresh crab rolls. YUM!!! It was a great meal together. In the evening he came back after work and we watched the Warriors play ? It really didn't matter who they were playing. I just enjoyed the time together with Gar.

So that's my big sob story. Doesn't sound very sad does it? It isn't. I get so disappointed in myself when I wallow in all that angst and fear. Once I'm firmly planted in whatever situation I fear, it usually works out just fine. This is exactly what happened with this hospital visit. Oh I may face a few bad days ahead but I'll face them if and when they happen.

So Happy Valentines day out there. Give a hug to those you love or a quick call or email.

and remember...

Yes, I can benefit from this over and over again....


Wednesday, February 9, 2011

Tomorrow it is!

Tomorrow I am re-admitted to the hospital. Unlike my last visit which was 9 days, this visit will be anywhere from 3 to 4 weeks. I'll be given a total of 3 or 4 different chemos during that time. The doctors have told me that this particular regimen might cause more side effects that any other therapy I've received so far.

Hmmmmm.....not exactly something to look forward to. Run away and hide?? I don't think its an option!

Is it any wonder I feel a little bit like the little girl above? Sometimes you just want to pout!!!

I'm going to miss my famila (they'll be visiting), my house (so much sunshine) and my freedom. THERE!! I stomped my foot too!!

Take care out there.


Monday, February 7, 2011

Back to the hospital.

Saw my doctor and nurse practitioner today for another set of blood tests. My test results have even improved since Friday. Had an adverse reaction to some of the chemo over the past two months and my liver was taxed and overworked. Today my liver function looks great. My nurse practitioner said it was time to return to the hospital for more chemo. I asked if I could have another week off. She brought in the "Big Guns," Dr. Kaplan who is all of about 5'. He got tough with me and said they wanted my Leukemia to remain in remission so it was important to continue the chemo treatment regimen as scheduled. Oh well, it didn't hurt to ask!

Looks like I'll be going back into UCSF on Thursday.

Just when I was so enjoying the Spring / Summer like weather in San Francisco!!


Saturday, February 5, 2011

A Life in Transition

What do you do when you've been diagnosed with a life threatening disease? Well, I was diagnosed with Leukemia at the end of November 2010. My first experience was denial.The doctors were just wrong and should have been talking to someone else. I thought, "This is another person's reality and future and not mine!" That frame of mind didn't last very long. With my admittance to the hospital and the nurses and doctors talking to me about MY Leukemia diagnosis, denial was no longer an option. After wards came anger. I do anger very well. I went through all of the "why me"," I'm not ready to go", "this doesn't fit into my life" diatribes. This stage was also fairly brief. I didn't want to take my diagnosis out on my family and friends. Then came fear. Fear was very difficult: "My kids, my grandson won't do well without a mother. My husband needs me. I'm not ready to go (also fits in nicely here too). My art is not yet fully developed. I need to travel further down my artistic road. What is going to happen to my dream of buying that Double Shotgun house in New Orleans?" Finally came acceptance. Well those doctors and nurses kept coming to me with my meds, updates on my condition. I knew there was no denying it was my disease and my present reality and future.

What do you do when you've been diagnosed with a life threatening disease?
Well, I see that you only have two options: one is positive and the other is negative. Let's start with the negative. The negative is where you fight the doctors on every poking and prodding, every med you take with side effects. You ooze negativity in every dealing you have with your doctors and nurses. You are a VICTIM of the disease. Well, I didn't go that route. It just didn't work for me. I chose the positive acceptance. My attitude is: "Okay, here I am. This is not fun but I am strong enough to get through this. I will endure the tests, the meds, the sleep deprived nights, a bald head. I will keep the fear and anger at bay. I want to endure this journey because I want to survive this disease. Leukemia will not take me away from my family, friends and my art. I have too much to live for and THAT is the reason I will survive this disease.

What do you do when you've been diagnosed with a life threatening disease?
Well, what I've learned is you listen to your doctors and nurses when they have information to pass on to you about your disease. You ask questions. You question their methods when necessary and you take notes. You make friends with your caretakers which helps with receiving the best care possible. You become your best advocate. You also accept the good and bad days. You will experience some of each. If you have a bad day, know that all you have to do is face it, accept it was difficult and that tomorrow you can start over again. I've taken on the 12 Steppers motto of: "One Day at a Time." It works.

What do you do when you've been diagnosed with a life threatening disease and you have 5 more months of treatment? You relish the good news. I'm currently in remission. My blood cell levels (red, white and platelets) are normal now. When I first went into the hospital they were at dangerously low levels. You take one day at a time. You work on your patience level. You also enjoy the love and support of your family and friends. My family and friends have been integral in my recovery. I have been enveloped by their love and support.

I'm at home now as I write this. My house is one bright sanctuary with bright orange walls and artwork. After my initial 3 week stay at the hospital in December, I was astounded by my home. It is not fancy or expensive but it feels like a place where a family lives. There is love here.

Next week I go back into the Oncology Clinic at UCSF to have more tests. Once the tests are in, I return to the hospital for another series of chemo.

This is my life for the next five months and I accept it.

As for now, I have a new outlook on my family and friends. They are so important to me. My work can wait for a few more months and by then I will have many things to express.

So...until then!


p.s. The artwork above is from a street artist who painted this on a garage door in the Mission. Its pretty darn FAB!