April 4, 2009
Procession of the Nobles
A week ago last Friday, March 20th, as I was driving to meet the Oncologist for the first time, I just didn’t like any of the fare on the radio stations, so I kept “surfing”. I finally landed on The Portland Classical Channel, which I have come to enjoy listening to more & more often.
Usually, I get in in the middle of a long song and never find out the title or composer and don’t care too much one way or the other, but this time it was different. I heard the announcer introduce “The Procession of the Nobles” by the Russian composer Rimsky-Korsakov from his only Opera/Ballet (yes, there is such a thing).
http://www.youtube.com/watch?v=KwmPSfKBvvE
I liked the title ..Procession of the Nobles so I listened. It inspired me and uplifted me and is powerful in some places, flowing in others. It is just like my Chemo drugs will be ….powerful but flowing through my veins beautifully. I decided even before my first meeting with my oncologist that this would be “My Chemo Song”. And so, even though I couldn’t remember the melody, when the first drops of Taxol dripped into my veins, I called them “My Nobles” and sent them on their procession through my diseased body.
I think of My Nobles every day and I picture them as strong, powerful elegant power rangers, pow, pow, powing those bad boys as they go on flowing through me.
April 3, 2009
Teal is my New Color
Teal Shoes by PDXFirefly
I think that everyone knows the pink ribbon that signifies breast cancer. But did you know that there is one for Primary Peritoneal/ovarian cancer? I didn’t until last week. It is the same ribbon, but it is teal colored.
I love teal. I actually have been wearing a lot of teal this winter. Hum-m-m??? Did I know on some level? Actually, I think “yes, I did.”
The doctor says that I have had this for about 6 weeks prior to diagnosis. That is about the same time I saw these adorable shoes on HSN (Home Shopping Network), available in 4 colors. I had been looking for a new pair of flats, but just had not seen anything that I liked for the price I wanted to pay. It was late one night and I was channel surfing before turning out the lights. I didn’t even know that I could get HSN. Do you remember I cancelled Comcast and now I am all free TV? Anyway, I thought I ‘d see what they had. Adorable shoes! But they are in patent leather — sort of dressy….I wanted something more casual. 4 colors ..black, hot pink, orange and they never showed the 4th color. I am getting tired and want to go to sleep; but I also want to see the heel height and shape and the 4th color. Finally they show the teal shoe with it’s cute heel. I write down the numbers and fall asleep.
The next moring, I call and place my order. Have you ever ordered shoes on-line? I had not -well, dance shoes– so I didn’t know what to expect when they arrived. I didn’t know if they would fit or would have looked better on the TV. I thought that they might look cute, but hurt my feet. They arrived within a few days –free express shipping– and I open the box. They are adorable –actually cuter in person (just like my grandson!) than in the picture and the color is a nice color. It is something I’ll wear and the shoes are comfortable.
Primary Peritoneal Cancer is very rare –less than 1% (I’m so special!) — and it has a 100% mortality rate. Yes, that does mean what you think it means. 100% of the people that get peritoneal cancer die from it…100%. The only variable is the length of time that people live with it. My understanding (without verification from my doctor) is that “they are making great strides in the 5 year survival rate”. There is no cure at this time.
Indeed, the survival rate for breast cancer is very high and there are even cures for breast cancer. No one survives Peritoneal/ovarian cancer, which is why nobody knows what the teal ribbon stands for. But now I know and so do you….
April 2, 2009
How did you Connect with your Adult Children?
This post is actually a reply to a comment by a dear friend. She asked me how I developed the relationship with my children.
It actually started when they were little. I just kept up the “I love you’s” and tried to fight the big battles. I wanted to win the war, not every battle. I tried to let them be themselves, but always gave them my guidance and let them know when I didn’t approve of something. I was a very strict Mom; but a fun one, I think! And they always knew where I stood on an issue.
One big turning point for me was when I had the humility to apoligize to them for a decision I made that didn’t turn out the way I had hoped it would. It let them see that I am human, but loved them. They were teen-agers at the time. And I am sure that they don’t even remember it.
Be real. Tell your son of your desire to really connect with him. Tell him how proud you are of him and specific accomplishments of his you admire. Tell him how your heart stopped when you found out about the near fatal accident and how you realize now that there are so many things you want him to know. Tell him about the heartbreaks and disappointments you have experienced in your life. This sounds like a series of really long letters to China!!!
This is not a “one-time” conversation. It is one that takes years in the groundwork. The actual conversation with my Daughter took place over the course of a week while we were on vacation. And she knew ahead of time that “there were lots of things I wanted to discuss with her”. So, she was prepared emotionally for it and could bring her questions and comments to the table as well. It is so intense that you can only do little bits here & there before you take a break.
The conversation with my Son was one that he initated. But he knew my feelings because I had expressed them several times to him letting him know that I wanted this conversation. He just took the opportunity that was put “in our faces” to respond and initiate the closure of this conversation. He did it out of loving concern for me.
I have two fabulous adult children. I am so lucky and thankful and blessed.
The Sign of Maturity
This diagram shows Maslow’s hierarchy of needs, represented as a pyramid with the more basic needs at the bottom.[1]
I have always felt there is time that most people reach in their lives that to me is “the unmistakable sign of maturity”. Maslow, has his Theory of Self-Actualization, which is a pyramid that illustrates the most basic needs of life at the bottom topped off by the tiny top of “self-actualization”. What that indicates is that one cannot get to the top (self-actualization) unless the most basic needs of food, water shelter, etc. are first met. http://en.wikipedia.org/wiki/Maslow’s_hierarchy_of_needs
I have been aware of this event ever since it happened to me many years ago. The same conversation was held between my Daughter & I about 2 years ago. And my Son & I had that conversation on Thurday. This realization just came to me on the day I received my ovarian cancer diagnosis and my Son, my youngest child, was with me to be my solid rock.
What is Portland Firefly rambling on about, you ask? Give me a few paragraphs and it will make sense.
When I was younger, I started thinking about my life, where I was, where I would have been if ……. many different things had been different. Then I started thinking about what a pretty good person I had turned out to be and to whom did that credit belong?
Parents, of course, come to mind. That is when I realized there were a lot of things that I wish had been different, and I wish that maybe my parents had been different in some ways. But then I got to thinking that we are the result of our total genetics, our total environment and experiences and that sum total only exists for one person –for me uniquely. Even my Brother’s experiences are different than mine — some are similar but none can be exactly the same and so we are very different people in some ways although we share many commonalities.
Then I came to the realization that I am a great person and that my parents did the best they could with what they had at the time. Through it all they loved me, and hurt when I hurt, and smiled when I smiled. Then I realized that I had never acknowledged them for raising me. Hum-m-m. What did I do? I chose to write a letter….a long letter…probably 10 pages long. Talking about all these things and acknowledging them. I did it at the time because it was something that I felt I had to do. I was in my early 30′s.
Then two years ago, my daughter and I had the opportunity to visit beautiful Sedona, Arizona together. Just the two of us for a week, sightseeing, and hiking, and an unforgetable helicopter ride! During that week, we had a beautiful “Heart-to-Heart” talk. It was very emotional for both of us and I was able to say many things that Iwanted her to know and she did the same. It cemented our bond together forever. We were now both two adults relating to each other without that constant Mother-Daughter tension. We have a genuine mutual respect, admiration, love, and acceptance of each other. Does it get any better than that?
Then, last Thursday, March 19, 2009 the day that I received my diagnosis of ovarian cancer, my Son & I had the same talk. Well, not the exact same talk at all, but the same spirit of the talk. The same spirit that my letter to my Father was years ago, the same types of things said that his Sister & I said two years ago. It was an emotional conversation and I was amazed, pleased, honored and moved. My Son has “stepped up to the plate” and become THE person I depend upon right now. It’s a big…no enormous… job and he has fully embraced it for my sake. I never would have chosen these circumstances to validate my children’s maturity; but since it was chosen for us, I have to give them all the credit. They have risen to the occasion and I am more than proud of them. They are my legacy and it is a wonderful one.
I have no worries now about my children. They are both incredible, successful, mature, fun-loving ADULTS. I can finally say that my job as a parent has been a success and I can rest in that accomplishment.
April 1, 2009
The Portacath Procedure
Yesterday, Tuesday, was the day for the procedure to install my portacath. A friend drove me from home and my son met us at the hospital and another friend drove me home. The reason for this is because my son lives and works on the other side of the river and tunnel and I am trying to minimize the amout of time he has to miss from work. My friends are so loving and willing to do whatever they can. I am so blessed.
Anyway, as I was escorted back to the day surgery area, I could see my waiting hospital bed at the end of the hall. I slowed down and almost stopped walking completely. It just came up and hit me in the face when I saw that bed —- I AM REALLY SICK. This is not just going to go away by itself. I had to stop for a minute to regroup then I kept walking with the nurse to the waiting bed.
Even though I was wanting to get the port and even though I had no fear about the procedure, I think the finality of this event really came home to me. What they will do this day, will be with me for the rest of my life. I will most probably have this port until the day I die. It is designed to make the rest of my treatments easier — for me and for the staff.
Since I have lost some weight, my upperchest and shoulders look rather “boney”. I insisted on a conversation with the doctor who was going to do the procedure. I also informed the nurse that “You will not take me anyware until my son arrives and I see him.”
Once I was in the actual procedure room, it took the staff a while to prep me and the room for the procedure. One of the staff members insisted on using my abdomen as a table to keep the items she was using to hook me up to all the monitors. It was bit uncomfortable and I strongly reminded her that I have Peritoneal Cancer and she was hurting my abdomen. Her snippy reply “ I am doing my job, I know what I am doing. I do this several times every day.” Later she apologized. Tomorrow I am calling her supervisor and if she gets fired, I don’t even care at this point. She hurt me and used me a table for her convenience even after I asked her not to do so. I might be sick, but by golly, I am not going to let anyone hurt me needlessly.
The actual procedure went fine, I guess; I was sleeping! After some recovery time, I was given some juice, water, yogurt, and a turkey sandwich before I was sent home. There was no mirror in my room, so I didn’t get to see the results until I got home. One big patch on my right upper chest wall with a big bulge where the port is placed under the skin. Then there is a small “cotton ball size” patch right where my collar bone meets my neckline. That patch is protecting the tube that is inserted under the skin into my jugular vein! I am pretty sore in that entire area and so I am taking tylenol, which my ride home went to the store to buy for me.
I felt like having some Mexican food after I got home, so I heated up some taquitos and cheese enchiladas and half of an avacado. M-m-m-m, tasty. It’s time to go and watch a movie in the recliner and hydrate!!! I’ll sleep well! Thank you all for your thoughts, prayers and notes. I can’t tell you how much they help.
