Saturday, May 17, 2008

So Much to Tell You!

I can't believe all that has gone on since I last was home. My brain is full of stuff from the conference. I'm excited about having gone as far as Atlanta ALL BY MYSELF for the first time since October! I'm excited about having spent a lovely night in a fancy downtown Buckhead hotel. I'm excited about so much!

I got up and got out at 6am because I saw that registration for the Conference Friday opened at 7am. I had a bit of a time finding the hotel which is advertised as being in Buckhead but to my mind is more close to Lenox than anything. Anyway, I found the hotel after a false start, and was thrilled that I actually had the energy to drive all the way into Atlanta.

I sat toward the front since I'm having hearing problems. There was seating there for about a hundred or so people, and very fancy audio-visual screens. I was one of very few people there that was not a medical professional. I met one other survivor who also attended. This conference got researchers together from every field of medicine. There were pathologists, oncologists, radiologists, researchers working with mouse studies, researchers doing human studies, and people who work as front-line service providers. There is a tremendous amount of research and investigation going on into the triple negative type of breast cancer.

What I have come to know is that this disease of cancer makes doctors frustrated and upset because they are working so hard to figure out some way to treat folks like me. They feel impotent against this kind of cancer. They are looking hard to find genes that are predictably associated with this kind of cancer. If a gene can be identified then there is a target they can focus on to fight this enemy. They are looking for ways to kill these kinds of cells, proteins and enzymes that feed this kind of tumor. They are trying to find the tumors diagnostically sooner because they grow so fast and are often in women with dense breasts that don't show the tumors clearly on mammograms. In six months time, a triple negative tumor can grow SO fast that it outgrows it's blood supply and the interior of the tumor starts to die (become necrotic) because it grows faster than it can get nutrients to its whole. The doctors are stunned by the fierceness that the cancer comes back with, and even when they think they have it all surgically, they are frustrated at losing patients in such quick time periods (less than one to two years) because somehow in ways that are not understood, the cancer cells hide out like dandelions cut down by a lawnmower but reappear and regrow quickly and unpredictably. Sometimes you get to live six months after treatment, and sometimes it reappears 19 years after initial treatment. The medical community hates this kind of cancer because there is such a limited amount of treatment available to offer patients, and because they know it's more deadly and more swift than other forms of breast cancer. What they don't know about the cancer is frustrating to them. They are using old cells from biopsies from the 1980's to examine the whole triple negative issue. They are unable to look at individuals like me, because it's too hard on their psyche. They have to look at things statistically and in as large a number of people as possible or they couldn't sleep at night. There is an energy in the room that wants to conquer this enemy, so I live now in hope that they will work hard to find a key or two to treating this cancer more effectively. Pray for the good health and energy for these people. They care.

I was excited that I drove all the way to Atlanta and then sat up ALL day. That's a lot for the lady that was reduced so long to just doing ONE thing a day. It was exciting to be with grown ups and learning and being at this luxury hotel where we had a lovely "bag lunch" where even the bag was elegant. I did feel a little set apart......it's obvious I am a patient, not a medical professional so there was no colleague-like feel or acceptance. In fact I was probably someone they wanted to stay away from because they don't have good answers for me. But I was up and out. I felt good all day, but I was awfully glad I had pre-arranged to have a hotel room close by. As I was leaving the conference I stopped by the restroom and I noticed that I was shaking all over. I drove up to my fancy hotel, and let the valet folks park my car for me and I checked in quickly, got room service for dinner and slept really, really well on a beautifully appointed King size bed with luxury sheets. Oh how decadent.

I came home today and stopped in Douglasville to shop at Old Time Pottery BY MYSELF! I was able to come home and nap. Then spent a little time with family and came home to my bed at my house. It was exciting getting out, but like Judy Garland said, "There's no place like home."

I'll post some pictures and more details tomorrow. Tonight, I'm just grateful for the energy that is coming back and the slow resumption of ability and independence that I was used to having. I still need help at times, but I'm getting stronger and I like it!

4 comments:

Calypso said...

Sounds like you have a fabulous time. GOOD FOR YOU!!!!!
Pampering yourself at a fancy hotel was the right thing to do.
It's also good to have you back again.
You seem to be getting better every day!
I am so happy for you!

Watercolor said...

wonderful!!

Anonymous said...

Once again, you blow my mind with all you do! Love, Randy

dgray1130 said...

I am so very proud of you! How amazing for you to go the conference and drive all the way to Atlanta so soon. You are in deed living life to the fullest. YOU GO GIRL! Now maybe you should get alittle rest. lol Love and hugs, Diane