Thursday was a beautiful AND a devestating day...
The beautiful part.
I met with my Barb Barstead and her daughter Kerry for lunch. Barb and I have known each other since high school. 29 or so years ago Barb and I went to Paris with a group of ladies. We have many crystal clear memories and hardy belly laughs from that trip. It is such a pleasure to RELAX and spend quality time with a friend who has such a history role in my life. It was wonderful!
Devestation and THE TEST
Prepare for the worst-plan for the best
I spent one and a half hours with Mary, the oncology nurse in Pleasanton. I wanted the truth. I wanted honesty. I got that, it just set be back a bit.
I sat as she read over my patholgy report and the notes from surgery. She put the papers down, turned her face directly to mine and with clear eye contact says "I want to be honest with you ( yes, yes, that is what I want). " Your situation is serious, much more serious than I thought from our other conversations. This is a very agressive cancer."
While I knew this, the frankness and the ability to ask all questions really clarified some things for me.
I am so happy I met Mary, this is some one who will be on my team with knowledge that I need. I must have the knowledge to make good decisions about my health.
Mary went line by line of my surgery report and told be in laymans terms what they did and why they did it.
I knew the doctors did'nt get all the cancer and it is still in my colen an some scatterings. I now know it is sprinkled over my diaphram. This cannot be taken out, it must be treated with chemo to get rid of it.
My pathology reports that I have a mixed mullerium tumor. What that means is I have more than one type of cancer. Sarcoma being the most aggressive. She showed me on a ruler how big the tumor was, bigger than any babys head. Or go to the produce department and find a squash that is smaller at the top and larger at the bottom. Bottom line it was BIG !
We talked about how great I look and how good I feel, yet, there are waves of gut wrenching tears. These take over me for max 60 secounds, the tears come from the deepest part of me.
She tells me it is common and it is part of grieving.
She also suggested and recommended that after chemo the doctor may want to take a secound look. That means surgery. I lost it there, my recovery was so difficult, I cant see myself doing that again. Then again, the surgery probably wont be so extreme and the recovery could be easier.
She STRESSED...you must only have JOY in your life. If you wanted to travel do it now. What ever it is do not wait. You are feeling good now, but later on you wont be. This is going to be a difficult battle.
It made me realize that I was thinking, ok about 6 months of chemo and then Ill start doing things I want to do. She stressed over and over-do it now.
I started thinking about what is it I want to do ,if I knew, I had only 6 months to live.
At this point, I am thinking about selling my condo, paying off all bills, cashing out investments and travel to all the places I have dreamed of (when my health allows it). I want to spend a week in Hawaii with Barry, Joe, Deb, Rod, Lara and Jake.
Barry will rent a house in Walnut Creek and we will be together there. We will do all the things I dreamed about.
AND THEN...what if 2 years pass and I am still here in rare form enjoying my work. Oh well, yippee, I have no regrets and nothing to worry about. Barry is fianancially stable. What ever I want to do he is behind me (and a few hundred of you friends/supporters)
I need to grab the gusto NOW and not hold back.
New pain
For the last week I have had a burning, stabbing pain located 3 inch's above and 3 inch's to the right of my belly button . I though maybe I pulled a muscle etc. It is always there.
Mary says "thats in your stomach" it could be nerve endings healing or the cancer could have spread. See your doctor. I have an appointment today at 3:15 Oakland Kaiser with Dr Ewening, who did my surgery.
Cinical trials
We went on line and looked at a variety of clinical trials being done that would be appropiate to my condition. It appears there may be quite a few to sort thru that deal with my type of cancer. It will take quite a bit of research to determine which ones are feasable for me. After finding the ones who would take me, she suggested I ask Dr Rubin (Monterey) what he knows or thinks about these trials. They all have different qualifications needed. One of the qualifications that kept coming up was no chemo started. I saw a few that said to qualify you must have life expectancy of 12 weeks. Yikes,my eyes doubled in size when I saw that. Mary say "these are a last ditch effert to live".
What do I know-what did I learn?
While thursday set me back a bit... I must view it as a test. Am I going to let new information stop me from fighting for my life, from carry that TOURCH for Suzanne. NO and NO and NO.
While the new information may have set me for a spin, it is not going to stop me from being the warrior that I am. Love, Suzanne
The beautiful part.
I met with my Barb Barstead and her daughter Kerry for lunch. Barb and I have known each other since high school. 29 or so years ago Barb and I went to Paris with a group of ladies. We have many crystal clear memories and hardy belly laughs from that trip. It is such a pleasure to RELAX and spend quality time with a friend who has such a history role in my life. It was wonderful!
Devestation and THE TEST
Prepare for the worst-plan for the best
I spent one and a half hours with Mary, the oncology nurse in Pleasanton. I wanted the truth. I wanted honesty. I got that, it just set be back a bit.
I sat as she read over my patholgy report and the notes from surgery. She put the papers down, turned her face directly to mine and with clear eye contact says "I want to be honest with you ( yes, yes, that is what I want). " Your situation is serious, much more serious than I thought from our other conversations. This is a very agressive cancer."
While I knew this, the frankness and the ability to ask all questions really clarified some things for me.
I am so happy I met Mary, this is some one who will be on my team with knowledge that I need. I must have the knowledge to make good decisions about my health.
Mary went line by line of my surgery report and told be in laymans terms what they did and why they did it.
I knew the doctors did'nt get all the cancer and it is still in my colen an some scatterings. I now know it is sprinkled over my diaphram. This cannot be taken out, it must be treated with chemo to get rid of it.
My pathology reports that I have a mixed mullerium tumor. What that means is I have more than one type of cancer. Sarcoma being the most aggressive. She showed me on a ruler how big the tumor was, bigger than any babys head. Or go to the produce department and find a squash that is smaller at the top and larger at the bottom. Bottom line it was BIG !
We talked about how great I look and how good I feel, yet, there are waves of gut wrenching tears. These take over me for max 60 secounds, the tears come from the deepest part of me.
She tells me it is common and it is part of grieving.
She also suggested and recommended that after chemo the doctor may want to take a secound look. That means surgery. I lost it there, my recovery was so difficult, I cant see myself doing that again. Then again, the surgery probably wont be so extreme and the recovery could be easier.
She STRESSED...you must only have JOY in your life. If you wanted to travel do it now. What ever it is do not wait. You are feeling good now, but later on you wont be. This is going to be a difficult battle.
It made me realize that I was thinking, ok about 6 months of chemo and then Ill start doing things I want to do. She stressed over and over-do it now.
I started thinking about what is it I want to do ,if I knew, I had only 6 months to live.
At this point, I am thinking about selling my condo, paying off all bills, cashing out investments and travel to all the places I have dreamed of (when my health allows it). I want to spend a week in Hawaii with Barry, Joe, Deb, Rod, Lara and Jake.
Barry will rent a house in Walnut Creek and we will be together there. We will do all the things I dreamed about.
AND THEN...what if 2 years pass and I am still here in rare form enjoying my work. Oh well, yippee, I have no regrets and nothing to worry about. Barry is fianancially stable. What ever I want to do he is behind me (and a few hundred of you friends/supporters)
I need to grab the gusto NOW and not hold back.
New pain
For the last week I have had a burning, stabbing pain located 3 inch's above and 3 inch's to the right of my belly button . I though maybe I pulled a muscle etc. It is always there.
Mary says "thats in your stomach" it could be nerve endings healing or the cancer could have spread. See your doctor. I have an appointment today at 3:15 Oakland Kaiser with Dr Ewening, who did my surgery.
Cinical trials
We went on line and looked at a variety of clinical trials being done that would be appropiate to my condition. It appears there may be quite a few to sort thru that deal with my type of cancer. It will take quite a bit of research to determine which ones are feasable for me. After finding the ones who would take me, she suggested I ask Dr Rubin (Monterey) what he knows or thinks about these trials. They all have different qualifications needed. One of the qualifications that kept coming up was no chemo started. I saw a few that said to qualify you must have life expectancy of 12 weeks. Yikes,my eyes doubled in size when I saw that. Mary say "these are a last ditch effert to live".
What do I know-what did I learn?
While thursday set me back a bit... I must view it as a test. Am I going to let new information stop me from fighting for my life, from carry that TOURCH for Suzanne. NO and NO and NO.
While the new information may have set me for a spin, it is not going to stop me from being the warrior that I am. Love, Suzanne
posted by Suzanne at
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