Tuesday, October 19, 2010

Off and Running!

The school year is in full swing for Brennan and John Paul. And as most parents of school-age children will know, it is also Fundraising time!

Our first fundraiser of the year is the Fun Run. All grades, K-8, and the preschoolers on a separate track, dawn the designated class color and walk and/or run a course that totals a mile or so when done. This year students could also jump rope to count as their efforts. It is quite the sight to see, 421 students walking and running around the Middle Building course.

We had beautiful weather, great music, and treats served after for all the hard-working participants. John Paul really hustled! Brennan would hold back until he knew I could see him and then, shazam! He was off!

The boys (otherwise known as me) solicited flat pledges for participating. And I would say they earned it!

I have several more stories and updates about the boys. They certainly lighten the mood from such serious topics. So I will be intertwining the joys of my life with my serious musings and posts. How can you not smile at these beautiful faces?

Monday, October 18, 2010

Perhaps someone read a comment to one of my posts about their negative experience at Seattle Cacner Care Alliance/Fred Hutch. I want to publicly state that I agree to an extent about her observations.

The system works so that you see one person, then another, then someone else, and so on. It can be very difficult to create a genuine relationship when both the doctors and physician assistants (this is who you almost always see when you have a medical appointment) have their own rotation schedules. The patient is constantly told about the excellent continuity of imformation flow. And you have two separate sets of "teams", one at Clinic and one in the Hospital. It is not uncommon to have visiting doctors and staudents involved in the appointments and care. Some times you just feel like an educational tool for someone else.

I also agree that at times you are dealing with someone pompous. This is mostly the big dogs. However, they need us patients to continue their research and fund them. I think some of the doctors should stick just to research and not treat patients. Their strong and weak suits are painfully clear.

The person who wrote about her negative experience there also felt that the consult team was very dismissive. I can tell you that I was very interesting in Clinic before transplant. And I was very interesting the month I was in the Hospital getting the transplant and then building a baby step immune system. But not so much after discharge and going back to live in the special building, The Pete Gross House. I often felt "unheard". I have come to wonder what the SCCA mission is. They seem to treat the disease only. And there is so much more to me that a disease.

I could complain alot more about SCCA/Fred Hutch so maybe some time I will. Yet no matter what anyone thinks, it remains the best bone marrow transplant center in the world. So with that said, I guess the rest is trivial.

The Day I Made a A Promise I Can't Keep

Craig and I have been very open with John Paul and Brennan about my illnesses. Of course this is done at an age-appropriate level. They understand it as well as they can. And some things can't be hidden. And they of course know every time I am in the hospital.

So often a child will ask a question and we can answer in very general terms. This works sometimes, but usually not with John Paul. That child continually pushes his questions and statement so close to the wall that I don't want to go over. I often search for an answer that will satisfy him and often respond in a bit more mature way. But interestingly he has somehow figured out alot.

Long ago I decided I would answer any and every question. It means it's on their minds and that they need to know, at least something that will put that worry or concern to rest. When I have been asked to make a promise, I have always made it, even if perhaps I had to tweek it a bit.

Last week my heart broke as I lied to my child for the first time. There was no way to tinker with the promise I was asked to keep. John Paul asked me to promise him that someday I would be totally all better. I lied and made the promise.

My heart broke. I went outside to cry. Then once again, for the millionth time, I wiped away the tears, pulled myself together, and came back inside with a smile on my face and attempting at normalcy. But I will forever remember that on October 4, 2010, was the day I made a promise I couldn't keep.

October: Breast Cancer Awareness Month

In the post I just wrote, I mentioned that I have these super cool statement shoe laces. I got mine at the Susan G. Komen website. They have white with pink and pink with white. I can't count how many times people have commented on the pink with white.

This segways into the main point: October is Breast Cancer Awareness Month. You have probably seen pink ribbons everywhere. Even professional athletes are wearing something pink. I am a fan of the pink ribbons and all the other pink "reminder" items that appear in October.

However, all that pink means NOTHING if it does not promote action. We women MUST take care of ourselves! Please make sure you are having an annual exam by your doctor. Tell your doctor of any breast cancer history in your family. Ask what age your doctor feels you should begin receiving mammograms. If you don't like the answer, ask for one now.

You are your best champion and advocate. You must do monthly self breast exams. If you find a lump, call your doctor and ask for an appointment to have it checked. Don't feel you are overreacting. You know your body best!

Breast cancer also affects men, although rarely. Guys: If you find a lump in your chest, please follow the instructions above. I don't care if you lie about why you need an appointment with your doctor, but make one. Keep it. And go!

I'm not going to write about statistics and such since I don't know them. What I do know is that early detection is our best weapon. Think about it. How many types of cancer can we essentially diagnose ourselves? How many procedure are as simple as a mammogram, where you just get your boob smooshed? I am amazed at how relatively easy it all is, but how infrequently we do it. (Obviously there are additional tests and procedures that may be needed based on your mammogram results.But let's take one step at a time!)

Some time I will write about my personal experience but it is absolutely irrelevant to this particular post. But I am begging you, women and men alike, to do a self exam. And women, I beg of you to ask your doctor if it's time for a mammogram. You are not too busy. Make this a priority.

Next time you wear a pink ribbon or any other item designed to create breast cancer awareness, do so knowing you are taking care of your own breast health. Don't be a hypocrite.

Men, love the women in your life enough and give them the space to allow them to take care of themselves. Perhaps you could even go to her mammogram appointment and wait in the waiting room. For some reason, we women are kind of scared of it.

The New Shoes

Today I put on my new Nikes. They are a blend of white and gray, with a touch of silver. I have replaced the laces with some Susan G. Komen white laces with pink ribbons. So in addition to being unbelievable comfortable, they make a statement. I think that's kind of cool.

You know how exciting it is to get a new pair of shoes and really want to wear them. It takes the right time and place to make their debut.

I bought them over a year ago, before leaving Seattle after my transplant. I knew these shoes would be part of the new me, exercising and getting back in shape. Their real statement was "I made it. Let's get on with it."

Every day when I decide what shoes to wear, there they are, reminding me of what should have been. Perhaps I will never make it to the day that I am working out again. So I might as well where the damn shoes anyways.

Sunday, October 17, 2010

Seattle: The Final Chapter

Taking the last flight out of Seattle, I found myself eager to put the distance between cancer and home behind. There could not be enough miles, really, to succeed. I am learning, and am reminded when I try to pretend its not there, that this is who I have become. To be more exact, it is cancer, treatments, and all the side effects that now define me. I used to think I would be getting "better" soon and all this nastiness would be a distant memory. Not so much.

I feel the need to write this one last post regarding my Seattle visit, and how some of the news is affecting my life. Some other time I can write and list all the problems and issues I have had medically, as I have been too hesitant to do so thus far. Frankly I think this is a great deal of why I don't write very often. I have only wanted to give you a happy ending. I wanted people to feel a return on their investment, so to speak. So I have skipped through most of the last year by just not writing, rather than lying. Many of you know firsthand that I am a terrible liar. I alsways end up telling on myself. However, ommission is an entirely different thing.

GREAT NEWS!! I am still in remission! This is absolutely fabulous news and each day I stay in remission bodes well for the next! I may now be made of of male cells (my donor was male) but my blood circulated through my body with no leukemia in sight!

Middle News: Seattle Cancer Center really likes for you to not have cancer anymore (I think. But more on that later.) But they sure are good at stirring the pot, creating drama, and listing your shortcomings. Think: this is too low, this is to high, we are concerned about this, etc. So even though you have just heard the great news that you are still in remission, the next sentence seems to be about something that is wrong. They should give you good news and then a lunch break, so that for at least one hour you can stay on Cloud 9.

Bad News: Unfortunately I have lost most of the immune system I had built. I heard the pontificating of statistics, still in shock. Interestingly, I had been told this news earlier that week by my local oncologist and then had Craig and I had a meeting the next day with another doctor to make sure I had heard correctly (I had been alone at the oncology appointment the day before.) I will dedicate a separate post later (I am running out of alone time, to discuss what this all means, what can be done about it, prognosis, etc. But to wrap this up, SCCA confirmed that this was not good. Their lack of attempt to comfort lies in their statements of "well, gee, sometimes this happens. We've seen this happen before" and other things that really have nothing to do with me. I know that they view us transplantees as a huge group, not regarding each patient as an individul. So I could give a shit if it happens to other people. This is me. My life. Help me, please.

Saturday, October 16, 2010

Leaving Seattle

I have avoided writing the conclusion of my Seattle trip for awhile. And now enough time has passed that I can't remember all the details and my memory is shot as it is...... So here we go:

The final day I was there was spent trying to get authorizations shoved through the system so I could have some tests performed right there at the mother ship. I called in a favor from the Group Health Transplant Director, who really wowed me. This time it was the SCCA system that didn't move fast enough. But the day was stressful because I checked out of the hotel but wasn't sure if I would need to stay an extra day. I'm making calls, others are making calls, and my phone is ringing off the hook as all the necessary parts can come together. Fortunately, my buddy Paul was willing to put up with me and when it looked like it wouldn't happen, he drove in to Seattle to give me a ride to the airport.

I had hoped to have a little better of a visit with him. We worked together at Coldwell Banker here in Spokane. He is one of those people who just naturally attracts people to him. I have looked up to him and admired him for years. But as things go, our time together was minimized to the drive to the airport. What I have definitely learned is to not attempt to make cancer trips also social trips. When at SCCA, your schedule and time are definitely not your own. And I get in this weird zone, and it is clearly antisocial. I always think it will be different, but it's not.

At the airport, I get to the gate to ask if I could possibly take a later flight or a flight tomorrow IF my procedure is scheduled. All the gate agent needed to see was my green card and my carry-on full of medicine and medical supplies. My flight leaves and I start my final calls, as cancer world closes at 5:00p. I came home on the next flight.

The stress and weight of the trip lifts off my shoulders as the plane takes off. I don't want a window seat. I don't need to see the city that is now rather associated with bad things. I read my magazine and try to let it all go. I must leave as much of cancer world behind me when I get home.

When I pull up to the house and am greeted by my husband and kids with big kisses and hugs, Seattle seems much farther away and much longer ago. This is where I live and where my life is. They are not necessarily the same. But I am home.