OK I get it I need to blog more!

So I haven't blogged since I started my radiation in April. I am so pleased to report that after THREE treatments I was virtually pain free on the right side. I am so impressed with how well area specific radiation works as well as the staff at Evergreen Hospital. You walk into EHMC and there are posters (featuring my favorite surgeon Dr. Marion Johnson) with their tag line, "Exceptional people, exceptional care." I think they nailed it on this one. My experience at EHMC for radiation was phenomenal.

Well after having such relief with three treatments on the right side I thought let's do the left. Matt and I went in to consult with Dr. Eric Taylor and my new hip/pelvis/femur MRI on the left. Unfortunately, the cancer on the left is diffuse and it would be very difficult for Dr. Taylor to "hit" the correct spot. For this reason, as well as the fact that I would be starting chemotherapy soon, he could not radiate on the left side. My bone marrow just couldn't take it before embarking on chemotherapy. I think Dr. Taylor was the most disappointed in the room. The hips, pelvis and femurs really are the largest sources of bone marrow production in the body. One side was all I could handle before a course of chemotherapy but the pain relief on the right was worth it.

I graduated from radiation on April 15th and was off to Philadelphia for the Living Beyond Breast Cancer meeting devoted to women with metastatic breast cancer. It was very informative and Elizabeth Edwards spoke. She is an amazing woman to hear speak. I would highly recommend her new book, "Resilience" for pondering many of life's issues beyond cancer.

Once I returned from Philadelphia we had a planning meeting with Dr. K on a Tuesday. I was going to start a regimen of Abraxane (a chemotherapy) and Avastin (a biotherapy) and keep going with my monthly Zometa (a bone builder.) I would have 3 weeks on and one week off getting my treatments on Fridays. It was a little confusing at first because week #1 is 2 drugs, week #2 is 1 drug and week #3 is 3 drugs then week #4 off.

Once we got that on the calendar my sister-in-law went to work on an schedule for assistance. Thank you to everyone who answered the call for driving and picking up the girls, taking them to parties and school events, folding laundry, cleaning, helping me here at the house to not get frustrated with being home alone. You have all offered to be "chemo-buddies" so Matt doesn't have to take the day off work for weekly treatments. Also, I have to mention the meals that just keep on arriving and they are so good.

Everyone seems to have something that they can do to help our family through this and you are all so generous with your time and energy. Most importantly, I would like to personally thank everyone, especially family, who have taken some of the burden off of Matt's plate. For the first time during this 22 month roller coaster ride I see Matt being able to do somethings for himself. Even if it is just to sit and watch a hockey game it is some time just for him where he can have some down time. With your assistance Matt can go to work, with less worry, and that is so important. I thank you from the bottom of my heart for all your help. We have an amazing village!!!

So where are we now? I did 2 treatments and then went in for #3 and was neutropenic. This is when your white blood cells are too low and the on-call doctor decided that I could not have chemotherapy that day. I have had a week and a half to get my WBC back up. We will know on Wednesday the 2oth. Matt has been feeding me fish, and green leafy vegetables and I have been focusing on a healthy WBC and my bone marrow working again. Our lives our hopelessly devoted to hand sanitizer and staying away from sick people (especially kids.) On that note, we really appreciate your candor when someone in your family is coming down with something. You know we would love to see you and the girls crave the play-dates but thanks for being aware of what a cold or the flu means at our house.

We should be able to start round #2 on Friday the 22nd. Keep your fingers crossed. Just as the Abraxane manual said my hair began to fall out 14 days after my first treatment. At first is was just a little bit. By yesterday there was so much hair in the shower drain it filled a gallon zip-lock bag. We decided to shave it off. Petra, my hairstylist/next door neighbor (A Sense of Style in Woodinville is where she works) came over with the clippers and cut it off. She tried to give me a sassy, short do but as I knew it was too far gone so I got a buzz cut. Mila took pictures and we made it a fun day and finished up by reading, "The Best Nest." As any parent knows, Mr. and Mrs. Bird need 'man hair' for their best nest. The birds around here are going to have wall-to-wall carpeting in their nests.

Thanks for the emails, phone calls and FaceBook notes of support about being bald. It is a really odd thing and I never really thought much of my hair until I saw it flying away into the yard. Your support means a lot. It is one of those weird life situations that is scary and liberating at the same time. Matt said, "It's very G.I. Jane" and I am good with that. Too bad the abs don't come with the buzz cut!

Young Survivor Conference in Dallas

I returned from the YSC conference in Dallas and I am happy to report that this year was quite different than last year. Better, stronger, faster...............



Last year the conference was in Jacksonville, Florida. That is a long flight. My flying buddy had an anxiety attack (the likes of which I have NEVER seen) and had to deplane before we left Seattle. It was so annoying (not her panic) but the flight attendants. OMG they kept saying, "We have seen this before and she will be F-I-N-E once we are airborne."

I looked to my friend and responded, "Does that look FINE to you? She is clearly not FINE. She needs to get off this plane." She was a puddle of goo.

They said, "We have already moved away from the jet-way, she'll be FINE."

There was quite a bit of back and forth and I said, "Just back the G.D. plane up and let her off or we are going to have a real problem." Fortunately, they did and she was fine.



So this was how my first trip to the YSC conference started. I long flight (red-eye) worrying about my friend and thinking that this was a sign, a bad one.



When I arrived in Jax everything felt surreal. It seemed like everyone else knew what to do but I didn't. They knew where to go, they had friends there, they had little treatment groups that bopped around the conference together with matching T-shirts. Basically, unlike me, they all had it together or knew someone or read the instructions. I was just totally overwhelmed. The pink factor was so high is was nauseating. It was a sea of pink.



Red sea, Blue sea, Pink sea, get me out of here now!



Everyone at the conference was delineated by a plastic lei. Blue for caregivers and yellow for health-care workers. Purple, green, white for years of survival, white being less than one year. Orange for mets. There I was dazed and confused and my albatross was a white and an orange plastic lei. I have mets and have had it for less than one year. I felt like Hester Prynne with her scarlet "A."



Here is what really blew my mind. I looked out into this large group of women with breast cancer that are under the age of 40 who have the time, the home support and the money to attend this conference and all I see is the orange and white. I know it is just like when you get a new car and then all you see on the road is that new car but it was so representative of the horror of this disease. These women at the conference were the fortunate few. How many others were out there with MBC who weren't represented there in Jacksonville with plastic leis.



I spent a lot of time in my room. I was so physically exhausted and emotionally sick that I couldn't bear it. I made friends with 4 women at the conference: Danica, Valerie, Beth and Dayna. That was it. The only people I really interacted with the whole weekend. Then on the way to the airport when I was just about to completely fall apart due to pain, both physical and mental, some BC sisters took care of me. They didn't know me but they could see the anguish, heck they could probably smell it coming off of me like an odor. Diane, Yuri and Heather probably saved me in that moment at the airport. Without them I probably would not have made it home (in all senses of the word.)



This year I set up some exit options and some alternative activities which was a good thing for me. I came in on Thursday and had dinner with my girlfriends Anne and Eileen. We went to this amazing restaurant that was opened by a guy who went to my high school!!! Apparently there is a large contingent of people from Washington who have moved to Dallas. Who knew? Then my friend Eileen stayed on until Saturday. I could go to the workshops and catch up with folks and then come back to my room and chill and hang out with Eileen. Just having these little things to do that weren't centered around breast cancer completely changed my outlook and thus changed my experience at the conference.



I had a really good time. I learned a lot, I hooked up with a lot of women I only email with on the YSC boards or FaceBook and I danced and had Taco Bueuno! I wasn't overwhelmed and it wasn't info overload. I feel so lucky that I could go. I really owe this opportunity to Matt. Matt can handle the home front with an adroitness most Mom's don't have. He makes this soirees possible and I really thank him for that. There are many other women who could not attend solely because their husbands could not handle home life without them (hometards.) Thanks again sweetie heart!



I kept my eyes open. I saw Dayna, Diane and Valerie. They looked wonderful and all reported wellness in their worlds. Beth, Yuri and Heather couldn't make it this year and sadly Danica passed last year. I wrote a little remembrance card for her. She was a bright spot in the darkness of my 1st YSC conference.



At my 2nd YSC Conference I was on the lookout for the girl with the orange and white plastic leis with fear in her eyes and anguish in her heart. If she was there I didn't see her. I have graduated to orange and green leis and clearly that makes all the difference.

My Video Debut for Trusera

On September 10th I sat down with journalist Sally Kassab at the home of my friends Jenn & Keith Schorsch, The Founder and Right Hand of Trusera.com (You can choose their roles as they must change on any given day.) They wanted to interview me about my experience with metastatic breast cancer. Sally was a wonderful person and was very well prepared. She asked me many questions that were thought provoking and intense. I did my best. I think the finished product is something that the Trusera team should be proud of. Although a lot of the interview was left on the cutting room floor (or in digi-space) they really touched upon important subjects. What do you do with this diagnosis? Why is the wait so long for a mammogram? What do you tell your kids? How does a family survive? How does one woman affect change?

This is a new program for Trusera.com. They are posting personal stories of real live people on the site. These are not trained actors as you might see on TV commercials. It is called "JustOne" and will propel the "power of been there" to a whole new level. If you haven't checked the site out please do. It is a wonderful, novel way at looking at health care and health challenges that we face. Trying to focus on the "it takes a village" concept instead of the "you gotta go it alone" process that is endemic in health care today.

Take a look at the video to your RIGHT. Let me know what you think. Thankfully, they used a filter that even Katie Couric would be happy with. I look so youthful and exuberant. I look like a woman who has weekly facials and exercises. Sadly, I often forget to remove my makeup at night and exercise for me is walking to the bus stop.

Additionally, many of the personal Thank Yous were left out because there are so many. At the top of my list is my husband Matt. He is my rock and I would not be doing so well if it weren't for him. My girls who keep me going every day, in every way. All of our family and friends. Our colleagues at the Seattle Police Department, the Seattle Police Officer's Guild and Aflac. My sisters at the Northwest Young Survivors Coalition and God. From the bottom of my heart I thank all of you. You rock!

Here is the link to check it out on Trusera:
http://www.trusera.com/health/list_collections/justone-title

Tequila and Salt

Tequila and Salt


This should probably be taped to your bathroom mirror where one could read it every day. You may not realize it, but it's 100% true.

1. There are at least two people in this world that you would die for.


2. At least 15 people in this world love you in some way.


3. The only reason anyone would ever hate you is because they want to be

just like you.


4. A smile from you can bring happiness to anyone, even if they don't like you.


5. Every night, SOMEONE thinks about you before they go to sleep.


6. You mean the world to someone.


7. You are special and unique.


8. Someone that you don't even know exists loves you.


9. When you make the biggest mistake ever, something good comes from it.


10. When you think the world has turned its back on you take another look.


11. Always remember the compliments you received. Forget about the rude remarks.



And always remember....when life hands you Lemons (or limes,)

ask for Tequila and Salt and call me over!

Sent by the fabulous Kimmie K. with whom I would shoot tequila at any given chance.

***********************************************************************************

'Whenever God Closes One Door He Always Opens Another, Even Though

Sometimes It's Hell in the Hallway'



I would rather have one rose and a kind word from a friend while I'm here

than a whole truck load when I'm gone.



Happiness keeps You Sweet,

Trials keep You Strong,

Sorrows keep You Human,

Failures keeps You Humble,

Success keeps You Glowing,

But Only God keeps You Going