Update from 10/12/08

Greetings my Family and Friends –

We have news from the Front Lines of the Castor and Pollox fight!

However, before we bore you with all of the technical medical junk, I thought you might like to hear about some of the gifts that have been swirling around our home in the last few months. So, grab a cup a coffee, your favorite treat, curl up in a blanket in front of the fire and let me share, because this could very well be a long email. And don’t worry. After this email, I think it’s time to start a blog, but I’m going to set Dave to work on that.

The world is full of Surprises!

I got the most wonderful email from Glenny Densem-Moir and Marian K. McBryde. They informed me that they were coming to visit me. They had it all arrainged, where they were going to stay and they weren’t going to bother me, just hang out a little bit and give me a little bit of company after my first round of chemo, What a great time we had! We told stories, and made art and David, my husband, who, by the way, is simply an Angel that walks on earth, played the piano for us and Marian and Glenny sang. It was a very healing weekend for me, one much needed after my first round of Chemo. The added bonus as that Marian and Glenny got to meet not only my family, but also Cindy Knox, my very best friend in the whole world and another dear friend Helen Blain. You can read all about the visit with pictures on Glenny’s blog.

Then, not two weeks later, Christine Merritt came to visit from Beaverton, Oregon. And you guessed it, more art and laughter and eating and fun. Christine helped me get started on my trades from Portland. So, If you got a trade from me, you can be sure that Christine had a hand in it.

Meanwhile, Laurel (my 17 year old daughter) and Cindy planned a 45th birthday party for me. Now when I say planned, that doesn’t seem to cover the full extent of the event. Cindy and Laurel had the heads together for weeks, traveling all over the bay making sure that just the most perfect thing was purchased as a faorThis was a full blown catered affair, themed (Marilyn Monroe and Gentlemen prefer 45 year olds!). Peoploe were asked to dress in Marilyn-esque attire. There were approximately 120 people at the house and I was set up like a Queen underneath the redwood trees in the backyard. Cindy was the hostess and greeted everyone as they entered the home via the red carpet. She prompltly gave them instructions as to where to but gifts or cards, where the food could be found and they each had to write a note to me on special paper which I think Cindy has special plans for.

Upon our return from the most fabulous Art & Soul Retreat in Portland this year, we were off to see the Oncologists. We started with a contrast CT Scan in the morning followed by an hour appointment with my primary Oncolgist Dr. Joe Mason in the afternoon. The CT Scan revealed that the Chemo is not working. In fact, Pollux had gotten significantly larger. So, we stopped the current Chemo protocol. We do have a new plan, with new players, so let’s start with What To Do About Pollux? (Ed. Note: These were Lee’s reflections on some of the medical aspects of her illness, so please feel free to skip over these)

What To Do About Pollux?

We always knew that Pollux was the nastier of the twins, sitting on that Lymph Node and all and boy were we right! Pollux seems to have liked the chemo drugs that we were feeding him and he grew! Here is the problem with his growth (besides the fact that it’s just yucky). Pollux is located on a lymph node next to the Superior Vena Cava and is putting pressure on that large main vein. It is a very dangerous situation because that vein is responsible for returning all of the blood from the brain, and the upper part of the body to the right returning atrium of the heart. It also puts pressure on the esophagus, thus inhibiting breathing and eating. This restriction caused by the Pollux is what is making my face swell and the right side of my body swell as well as excess bleeding when I get poked by a needle on the right side. Now, you wouldn’t know it by looking at me, but according to the scale, I have lost approximately twenty-five pounds since the beginning of our adventure. However, with Pollux being so large and invading territories other than his own, the swelling in my face alone makes me look like I have gained thirty pounds. This increased pressure in my head is also giving me headaches and making it hard to see and write (my hands to work like they used to). So, since Pollux has actually increased in size (Castor got smaller), this Chemo is definitely not doing what we want it to do. So, we are going to attack from a different angle.

This morning we went to Kaiser’s Cancer Treatment Center in Santa Clara (approximately thirty minutes from our house) and saw the nicest Radiation Oncologist named Dr. Asif Harsolia. Very happy man. He was born and raised in Michigan and has only been in California for two years and is loving every minute of it. That’s what I want in a doctor, someone who is oh, so happy with his life. Dr. H took us through the CT Scan that was done on the 7th and showed us how Pollux is compressing the Superior Vena Cava, which, at this point, the SVC is about a quarter of the size it should be. Dr. H. believes that he can give me 80 to 90% improvement of that vein by zapping Pollux with radiation. I will feel worse before I feel better, but feel better I will. Additionally, Dr. H. showed us the tumor that is putting pressure on the L2 region of the spine. We haven’t named that tumor yet, but he is about the size of a small grapefruit and also living on a lymph node. This tumor is causing a lot of pain and is severely impacting my ability to paint. Good news is that with radiation treatment, again Dr. H. can predict an 80 to 90% improvement by reducing the size of the tumor. The only problem with this tumor is that it is currently also putting pressure on the right kidney and in the process of killing the tumor, it is entirely possible that we will have to sacrifice the kidney to kill the tumor. So, I thought about it for like two seconds and decided that giving up a kidney to be able to paint again was definitely worth it! So, Dr. H. said he would do what he could to spare the kidney, but I would rather paint, so damn the torpedoes, full steam ahead!

Then we were off for another CT Scan where they got me all lined up and tattooed for the radiation treatments that will start on Monday. There will be fourteen treatments, every weekday (not weekends). The treatments won’t take long, but they will make me tired. The further you get into radiation, the more likely that burn marks will appear on the skin, in my case, the chest and lower back. But that is individual to each person.

Each Day with Gratitude

Pain is a real issue for me and it’s no wonder with a tumor (which Laurel and I have named Marla. If you have ever seen the movie ‘Fight Club,’ you’ll understand that reference!) the size of a small grapefruit pressing on the L2 region of the spine. Even so, I am determined to meet each day with gratitude. Pain is just a reminder that I am still here and I can still feel. I am looking forward to starting the radiation treatments which will help with the pain so much in the back and the radiation on Pollux that will make it easier to breath and swallow and will hopefully give me more energy.

Each morning, when I count my blessings, I think of all of you. I imagine your faces smiling at me and that gives me great strength to start my day. These groups that I belong to, Art & Soul, The California Art Girls, Extreme Journalism, and the Crafting Closet, not to mention the prayer groups that have been working overtime for me all over the world are a testament to the wonderful ways in which the internet can be used. I am connected to a huge sisterhood that is spiritually bound to each other in one way or another and somehow, someway, everyday you remind me that I am not alone and that I am loved. When I get scared, or lonely or just need a hug, a read one of the emails that has come through and my heart feels lighter and I smile. Whether you know it or not, you are making this journey easier on my children because I can be softer with them and more available to them. Each one of you is a gift – one of the purest gifts that can ever been given, because you are pure white love reflecting back in the heart of a person in need. So, for me, gratitude starts each day with you.

Next Steps:
Once the radiation is complete, we’ll re-evaluate things and return to Dr. Mason. who is talking about doing more Chemo with stronger drugs on a different protocol. We won’t know what that looks like until we get there.

Please remember that in all of this, we are not looking for a cure, just quality of life and life extension, if at all feasible. Funny words, those. Isn’t that what we are all looking for?

Do not be afraid my family, my friends. I am here to tell you that I am strong and that this strength derives from all of you. I am grateful and I welcome what God, the Universe, my Higher Power has chosen for me to learn the lessons that I must learn and the time to pass those lessons on. Each one of you is so special to me and to my family. You give us the hope and the courage to face the coming days ahead.