Thursday, April 30, 2009

Rider's Edge

Ohh I was scared. I think I told you that before. But I was more scared to take this motorcycle class than I was to get married. I don't know if it was the fear that I just wouldn't be able to 'get it' and ride a bike or if it was the fear of doing something stupid. But I was scared!
We got there on Saturday morning, suited up and started to ride. They taught us from rolling the bike to using the clutch to actually riding. I came home Saturday and I kept saying "I can drive a motorcycle!" Thankfully Pete was nice enough to keep indulging me and smiled everytime I said it.
Sunday came and it was srizzling. And I was fearful that it would rain during the test and I wouldn't pass. We kept learning and practising skills. Finally the testing came. And although I did the skill right before that, when it came time for the test, I went out of the lines. And I was SURE that I had failed.
We went onto the next skill and I did well. Although my stop was long, but in my defense it was raining. The last skill was a curve and I went long on the time it took to complete.
But, I PASSED! I am a licensed motorcycle driver! Yay me!
Honestly, it was the best thing for my confidence. I have a skill that not everyone does and I did it on my own. So I'm now on the hunt for a motorcycle.

Thursday, April 16, 2009

No relief

My mom is negative. I had such high anxiety going into the appointment. High. And when the counselor came in and said it was negative I expected some big sense of relief to wash over me. But there wasn't any.

So it's both good and bad that she is negative.

The good is that we know the BRCA1 & BRCA2 are not carried by my mom.

The bad?

Well given oral history of my Dad there is not quite enough to test Kim and I. One of our aunts is currently in treatment for breast cancer. The counselor asked if we could ask her to come in for testing. Now any other aunt that Kim and I have would likely not even think twice. This aunt? She is upset with my dad who is the executor of my grandma's estate and they are not speaking. So she didn't even want us to know that she had breast cancer. There is no way that she would agree to testing. So basically Kim and I could have a chance that we have it from our dad's side.

The genetist is pretty convinced that my mom is a carrier of some breast cancer gene, but one that they cannot test for yet. Apparently there is possible testing for a BRCA3 & BRCA4 in the works. So if something comes in, they will call my mom in for additional testing.

In the meantime, it means that Kim and I need to have yearly mamograms and yearly MRI's, usually spaced 6 months apart. The counselor will help see that our doctors order this and insurance pays for it. When we hit 45, they recommend that we seriously consider tomaxafin for prevention. It has it's own side effects and issues.

So although I don't feel a great sense of relief, I fee better.

Oh, and my Mom banked her blood with the U of M. So if she is not here and some test comes along, we can access her blood for testing to see if there is genetic history for the disease. Thanks mom!

Wednesday, April 15, 2009

A Wrench In The Plan

My inner dialogue is no longer just that. Today it's a freight train running through my mind. Instead of a wuiet dialogue, it's almost yelling in big fat letters. And I indulged today - caribou Coffee and Cherry Limeade from Sonic. I felt like I deserved it.

The wrench in my plan - Dad's side of the family. All along I've planned it out. If Mom is positive, then Kim and I are tested. If she is negative, then it's over. Only yesterday I realized that we charted Mom's history, not mine and Kim's. So if Mom is negative, we need to chart Kim and I to see if we should still be tested. I hadn't planned on that. It never entered my mind. It plays into my dislike of the unknown. My dislike of having a plan in myhead, working it out and then something new enters and my plan has to change. I'm struggling. Today, I am struggling with the additional knowledge and wondering how to plan it out.

I still think that my Mom is positive. And I'll be pleasantly surprised if both Kim and I are negative.

Tuesday, April 14, 2009

T minus 1 day

and counting.

Tomorrow is the day when we learn if my Mom is positive for the BRCA mutation or not. And honestly, I'm scared. Scared because no matter what it will change our lives. And if she is negative, it doesn't necessarily mean that Kim and are are negative because of a history of cancer in my Dad's family.

I know that everyone deals with this differently, but I can't figure my Mom out. When we initally met with the genetic counselor, she made statements about it being more than Kim or I thought about. We told her and the counselor that we had been thinking of it. But I don't think she had. Not at all.

When the test came back so quickly I figured that it was positive. And still today, knowing nothing else, I'd bet that it was positive. My Mom finally got the bill from the insurance company from the testing. Instead of $3700, the lab charged her insurance a little over $500. This made her think that it was positive. Only because the intial testing is for the Jewish 3 spots. I don't think that she had thought this previously and I think it shook her. She called to tell me this so that I'd be prepared. I think I'm as prepared as I can be.

And it didn't stop there. She is upset that they stopped testing aftger the inital test (if that's really what occurred) because then she won't know if there is cancer on her Mom's side (the Jewish side is my Grandpa). I told her that it doesn't matter. Once you're postive, you're positive. It's nice to be able to figure out where it is, but not always does that occur. She said that it wasn't fair because she couldn't let her Mom's side know of any increased risk. I tried to tell her that it's not her responsibility to inform all of her family of this. She simply can say that she is positive and they may want to think about visiting a genetic counselor. Again, I think it's a matter of her wanting the power to say that she has this and inform everyone about it and tell them what they should do. She lives for situations like this in some odd sense, it give her pleasure.

So here I sit. This result looming over me like a cloud. It colors all my decisions lately. It makes me wonder about life and how it would change. It almost stops me from thinking of the near future because plans would change dramatically. I want it done and over. I want to know, but yet I like the innocense of not knowing.

Monday, April 13, 2009

The familiarities of church

Attended a funeral today. A young woman died in her sleep leaving 2 teen daughters. Our friend/their grandmother, will be raising them. It's not only a huge shock, but a substantial change to everyone's life. And I wish them well.

I keep telling people I the Catholic Church is familiar to me. That I take great comfort in the rites that go along with a Catholic Church service. I was reminded of that today. The standing, sitting and kneeling got to everyone else. Muttering and not understanding when to do what. Only I took comfort in it. It was familiar and gives me peace.

Afterwards Pete and I talked about religion. He asked if I was 'done' being a Catholic and I told him I wasn't. I don't always agree with everything that the Church does, but I still find comfort in it. We talked about attending services and he asked why I didn't. And I told him that it didn't fit into our lives and I didn't always want to go alone. He shocked me by saying that all I had to do was ask. For a long time I thought he may be an athiest. But I realize that he just doesn't fit into one religion. He believes many different things and doesn't conform to one.

I sat and thought about how comforting it was to pray. I know that I can pray anywhere, not just in chuch. But I think I'm going to take Pete up on his offer this weekend and see what happens.

Friday, April 10, 2009

What was I looking for?

I finished the book last night. And it left me uneasy and honestly disappointed. I sat and wondered why I was so damn disappointed. I think that I was seeking answers from the book. Something that would point me in the direction that I needed to go. And I never found them. Instead it raised mroe questions about what to do, how I should feel and things like that.

Then on the news last night this story caught my eye. The lead doctor seems to imply that women are needlessly going through mastectomy surgery. And it made me mad, what he said. There is a lot more to medicine than physical. There is a huge emotional and mental side to medicine. And while I understand that he doesn't want people to go through with surgeries that they don't need, you can't deny the mental part of it. When my mom was diagnosed with cancer she was offered a lumpectomy. However, the lump was far in on her chest wall and my mom had just made up her mind that she was going to do the double mastectomy. After testing the cancer, they found that it was agressive, but early. Why live in the fear that not all the cancer was removed with a lumpectomy? And live in fear you would with that knowledge.

Pete and I talked a lot the last few weeks. I am so very lucky to have him. To have someone to share my thoughts with. Although it's a new thing for me to share with someone and I sometimes struggle with it. He is there to listen to me, to hold me, to ask me questions and to support me.

So it's 5 days from knowing my mom's results. It's interesting because I haven't told anyone at work. When my mom was diagnosed with her cancer I didn't tell anyone for about 6 months. Even then I told Stacy when I was out visiting her mother's day weekend and she asked me to stay later. She was shocked and it felt good to tell someone finally. I realized later that I never told anyone at work because it was my cancer free place. It was the place where no one talked about cancer, drains, reconstruction, chemo... Then it started to feel like a secret and I had to share. But I rememeber that feeling of having a safe haven. It's much like that now. I have this safe place that I don't have to give information or tell how I'm feeling.

Thursday, April 09, 2009


A year ago May, Pete and I bought the Harley. When he was looking at bikes, we talked a lot about what we wanted to do with the bike. Where we wanted to go, things to see and whether or not to join a club. Initially I was resistant to joining a motorcycle club. All those images of bad biker dudes played out in my head and that's just not me and frankly not Pete any more. He knew of a few clubs in our area that would be ok and we talked about them.

Pete put a deposit on the bike and we ended up at the dealer for one of their fundraising events. While there, Pete notices a guy walking around with a Dry Riders patch. He stopped him and started talking to him. Within a few minutes though he was whisked away to talk about his bike and I listened and chatted with this Dry Rider guy and his wife. Honestly I don't remember what we talked about. Other than the fact that they said they did a lot of camping. I kept thinking that it couldn't be much fun if he was riding his bike to camp outs and she had to drive a car with all the stuff (naive, huh?)

Anyway we exchanged numbers and went our separate ways. I couldn't tell if Pete was more excited about the bike or the club. Pete got the bike and I encouraged him to call the guy about joining. We were invited to the range ride at the end of May. And I can tell you that it was the most fun I had in a long time. The people were interesting, fun and so welcoming! It was amazing.

So Pete and I asked to prospect for the club. And we jumped in whole heartedly. We attended everything, every event even though the summer was filled with other obligations and planning our wedding. We met lots of new people, saw more of the state than I had ever seen and made new friends.

When I think about it, I tell Pete and we are lucky. Lucky that fate or God or something placed us in the dealer that day to meet these people. They have supported us in hard sad times, celebrated with us in joyful times and welcomed us into their lives. We are lucky. Very lucky.

Last night Pete and I were at the monthly meeting for the club. The full members were out of the room for quite a long time discussing the membership of someone who had completed the year of prospecting. When they came back they shocked Pete and I by having voted us in a little early. We are Dry Riders!!! I'm sure my face was all colors of red and my smile was all teeth. But mostly, my heart was full from the people in our lives.

Wednesday, April 08, 2009

Pretty Is What Changes

I keep thinking it over and over in my head. What does it mean? Is it that the only thing that changes in you if you have profolactic surgeries is your beauty? Is it that if you have the surgeries and go through all this, you're still the same person, but your idea of beauty changes?

I got the book yesterday. Pretty Is What Changes by Jessica Queller . I drove home and spent about 3 hours reading. And it was familiar, the reading. I can lose myself in a book quickly and race through it. About page 24 Pete asked me if I learned what I needed to learn. And it was then that I realized that I was looking for guidance in some sense from the book. Learn what to do from her choices and decisions in the book. At page 70 I realized that she had much the same relationship with her mom that I had with mine. Just a tumultuous relationship that ebbed and flowed and made life difficult.

Then I realized that I was racing through the book. It's what I usually do. Read quickly, not to get the book done, but to emerse myself in it. I tried to slow down and take in more.

Then I read a line that really hit me. She was upset that the clinic she was at kept refering to her as a patient because it was a cancer clinic. Then they explained that once you test positive for the mutation, you are considered a cancer patient. What a powerful label. Not powerful in a good way, but powerful.

I'm half way into the book. I had to stop last night so that I wasn't drownding in the subject. It really brings me down. I did learn that there is a message board called FORCE = Facing Our Risk of Cancer Empowered. Part of me wants to check it out and the other says that it will be more information than I can handle.

Monday, April 06, 2009

It looms over me

Sometimes it consumes me. Consumes my thoughts.

When everything else is silent and my brain is still.
When I look at the calendar.
When I hear an emotional song.
When I see the words 'breast cancer'.
When I think about my Mom.
When I'm in the shower.

It's all I can do to think of how my life would change. Of what would change in my relationship with Pete. Of what I'd have to go through. Wondering if I'm negative will my insurance still pay for increased preventative testing.

I know that the counselor said that my life would change even if the tests were negative. But I can't see it. I know that it's a strong factor in my health already. I know that there may be a day that I hear those words and I've prepared myself for the diagnosis. I've prepared myself to be vigilant in the fight to catch it. I can't see how my life would change if I was negative.

And I think of my mom. If she is positive will her life be any different? She's had a double mastectomy already. Her doctor has already suggested a hystorectomy. How would her life change?

I think of my sister and I cry. I cry because she has two beautiful children who need her. Her life would be truned upside down if she was positive. Would I feel guilty if she was positive and I was negative? I know that I would. I already have guilt issues. My heart races wondering if I could put her before me? Would I, could I take the bullet for her? I can only think of the eyes of her children and know that my guilt would eat me up.

I'm fearful today. I'm plagued by questions that run through my head like a deer. Darting here and there, quickly.

Thursday, April 02, 2009


I need to look for something good. Something that is going to tell me that the world will be ok. Or rather my little part of the world will be ok. I chose the sun. It's finally out today. It's still cold, but sunny.

The spring sun is so warm. I don't know if it's the angle of the sun or the closeness of the sun, but it's warm. And I think that my favorite thing is to lay in the car where the sun shines through and heats up and doze. Of course it's the middle of the morning and I'm actually at my desk. So laying in the car right now isn't going to happen. But I can dream.

Wednesday, April 01, 2009

There, but for the grace of God, go I...

In other words, that could be me.

Sometimes it's so easy to pass judgement on others. I think that we, as outsiders feel like we have the whole picture. Sometimes we do and sometimes we don't. Sometimes when we're not in the middle of something, dealing with it all the time, we think that we have all the answers. Sometimes we do and sometimes we don't.

I'm struck lately with how much I learn as an adult. I'm not talking about learing math or english or science. I'm talking life lessons that I wonder if I've passed over previously. It took me a long time to learn that I can't please everyone and I have to please myself. It took me a while to learn that I may be scared to do something, but I'll regret the not doing it more than I would have been scared doing it. I've learned that I can't always control my destiny, but I can make the best of my present situation and learn for the future. All lessons that would have made my life easier a lot sooner had I learned them previously.

I've learned another one. I can't judge someone's desision, when I've made a similar decision myself. It was kind of like a smack in the face, this lesson. But a clear lesson. Crystal clear. And while it's nice to know that I'm not the only one who made a decision like this, a hard decision. It makes me sad that others go through the same hurt that I did. It also makes me question why I made the decision and other little decisions around it.

I know I'm being a bit criptic here. And well, it's intended to be so. I don't regret my decision, but I need to look forward from it. I need to not sit in wonder of whether or not it was right or what others would have done. I need to be more in the present, not the past or the future.