Hair-Before, During and After

Shana is taking her cancer diagnosis by the horns and is cutting off much of her long blond hair today in anticipation of chemo-induced hair loss. I admire her for doing it. Everyone has to do what makes them comfortable and this is her way of taking control of the situation.

I know that it is the hardest part of having cancer for many people, but I found that though the anticipation was horrible, once my hair was gone, I never looked back. There are difficulties to being bald, but I never felt bad or embarrased about not having hair. I felt like it made other people uncomfortable sometimes, but when I looked in the mirror, I just saw me. Maybe more of me than I had before. I actually had to take a look at my face since I couldn't focus on how my hair looked.

My hope for Shana is that she finds the strength and beauty that can come from losing your hair. Whether she chooses a wig, a scarf, a hat or none of the above, I hope she feels comfortable enough in her own skin to be proud of how she looks.

I am including before, during and after pictures to remind her that it really does grow back. Mine is in the process of growing back and still isn't very long....but it is hair and it is mine and I am comfortable with it.

No Smoking

Yesterday as I was walking to get my lunch, I saw a group of teenagers smoking. Here in Seattle, smoking is probably less prevalent than other places and maybe having grown up here I am less tolerant about it. It makes me sad and angry to see it.

When I was diagnosed with breast cancer, I had to take a good look at what my risk factors were and found that I really didn't have many. I did not start menstruating early, I don't have any family history, I have never smoked, I have since found out that I do not carry the BRCA1 or BRCA2 gene, I am not obese and though I had my children a little later (32 and 33), it doesn't increase my risk significantly. So with very few risk factors (can't change the fact that I am female for instance), I still was one of the unfortunate ones to be diagnosed with cancer.

Having cancer is not fun in any way, shape or form. It is not fun to go through chemo or radiation, surgery or hair loss, not to mention the emotional turmoil and the possibility of death. It is miserable and I want to shout it at the people that I see smoking. "WHAT ARE YOU THINKING??!!!!"

We all have a certain amount of risk factors, some we can change and some we can't. But smoking is a KNOWN cause of cancer. Not suspected; known. You smoke, you get cancer.

A few things I found on smoking and risk:

"Among male cigarette smokers, the risk of lung cancer is more than 2,000 percent higher than among male nonsmokers; for women, the risks were approximately 1,200 percent greater. Lung cancer is the single largest cause of cancer mortality among both men and women and accounts for more than one in every four cancer deaths nationally in the U.S."

"In all, it is estimated that cigarette smoking causes approximately 23 percent of all cancer deaths in women, and is responsible for 42 percent of all male cancer deaths (Shopland et al., 1991)"

Specific to breast cancer risk, teens who smoke are more likely to develop breast cancer before menopause and are more likely to be diagnosed with aggressive, hormone receptor-negative type breast cancer.

Every time I see a teenager smoking and am with my children, I tell them again that they will NEVER smoke. I will not allow it. I will not tell my girls that they can try it, that it is ok to do in moderation or only once. I will not tell them to use their own judgment. I will tell them that under no circumstances will they smoke. I hope and pray that having watched me go through cancer they will never even be tempted.

Thinking of You

For my Great Aunt Mae who is struggling right now and who I love very much.

For Shana who is going through her first post-chemo weekend. I hope it is treating you well and you are able to have a good weekend.

Math Lesson

Back in December I was supposed to have an appointment with the hereditary cancer specialist at Swedish. Bring on some ice and snow and my appointment went by the wayside. I was able to reschedule the appointment for January 13th. Larry went with me and we spent an hour or so going through our entire individual family histories. It's hard to keep track of everyone's illnesses and ages!

After an extensive discussion, we decided that I would be tested for the BRCA1 and BRCA2 genes. It is actually a mutation of the gene that is being tested for. Despite what most people think about risk, having a mutation of the BRCA1 or BRCA2 gene accounts for less than 10% of breast cancers.

Yesterday I received a call from Dr. Resta-the walking encyclopedia of hereditary cancers. My results are in and I do NOT have the BRCA1 or BRCA2 gene mutation known to drastically increase the risk of breast and/or ovarian cancer.

I am happy to know that I am not passing on a genetic predisposition to breast cancer to my daughters. People who carry the mutation have up to an 80% risk of developing breast and/or ovarian cancer.

So what does this mean for me and my children? The average woman has roughly a 12% chance of developing cancer in her lifetime. As someone who has been diagnosed with breast cancer already, my risk is now roughly double that-about 26% of a recurrence or a new diagnosis. Chemo, radiation and tamoxifen have have reduced that number even further to about 16%.

Because their mother has been diagnosed, my children now have about a 20% risk of developing breast cancer. However, since they have not yet reached puberty, this is a very rough number.

My sister, having come from the same gene pool and growing up in the same environment also has an increased risk. Her risk is now about 20% as well. Now we all have our numbers to do what we will with. Numbers are only numbers and even people with an 80% chance of developing breast cancer have a 20% chance of NOT developing it.

I have an 84% chance of NOT developing cancer again and I accept that number. However, I still am looking forward to the day that I can say I have a 0% chance of being diagnosed again and that my children and any other women on the planet have a 0% chance of developing it as well. Zero is my new favorite number.

...And Then

I remember when I was pregnant with my oldest daughter. I spent the entire 9 months focusing on the goal of creating a healthy baby and preparing our home for the baby's arrival. Once she was born, we were madly in love with her of course, but I remember having some confusion about what my life looked like. I guess I am a goal oriented person. When I was pregnant, I knew what my goal looked like-a healthy happy baby. Once she was born though it was a little harder to define that goal-it was like having a blank canvas to start with. We got into a routine and then had another baby and our life started to define itself.

Many people who go through a cancer diagnosis go through some form of depression after they have completed treatment. I am not one of them, but I am starting to understand why it may happen. I have spent the last seven months battling cancer. It was a very clear goal-SURVIVE! I was armed with very specific tools to accomplish my goal; chemo, radiation and many trips to doctor's offices. Now I find that my goal still is to survive, but it is more than that. Now I get the opportunity to live and live well. While I am extremely grateful to have the opportunity, I find again that I am faced with a blank canvas. I know there are certain things I want to do such as walk in the 3 Day this year and write a book (or two) and continue to have a good marriage and family life and a job that I enjoy and feel valued in, but I feel a little like a marble in a jar. I never really thought about defining my life before I had cancer. I just plugged along and did the things that needed to be done. I feel like I have a second chance to define my life and I'm not sure how to do it.

Maybe this is a result of feeling like there must be some reason why I got cancer and there must be some reason why I am to survive it. I keep looking for that big blinding sign in lights telling me what that reason is and I have yet to see it. I need to figure out the rest of the sentence. "She was diagnosed with Breast Cancer, she battled it and won and then......"

Seattle 3-Day 2009

Yesterday I took the plunge and registered for the Susan G. Komen 3 Day Walk in Seattle. It is a big challenge-60 miles in 3 days. It is a commitment to train for and to spend 3 days away from my family. It is also a financial commitment, I have to raise 2300.00 to participate.

I could definitely say that I have had my fair share of breast cancer taking time out of my life and not do this walk. I could just donate to a friend and call it enough. But it is because other people before me have taken on this challenge that I get to benefit from the research funded by these walks. My cancer treatment was designed specifically for me, based on my diagnosis, my stage, my type of cancer. This is a relatively new way to treat breast cancer. It used to be that everyone diagnosed was given the same treatment and they would just hope for the best.

The fact is though, I am STILL at an increased risk of developing breast cancer again as are my children, my sister, my mother and my nieces. With all of the people that I love at an increased risk, can I really not take part in fundraising?

My sister has decided that she will also do the walk with me. I am thrilled beyond words that she wants to do this with me. This is her fight as much as it is mine and I am excited that she feels compelled to take this step with me.

I have attached my fundraising page on the LINKS at left. If there are others that might want to walk, today is the last day for a discounted registration using the promo code NEWYEAR. It is an important cause, not just to me, but to all women. I am thrilled to be a part of it.

All Clear!

I received a call from my oncologist saying that not only was my mammogram all clear, but so was the MRI. I am cancer-free! I will have MRI's and mammograms every 6 months for the rest of my life, a minor inconvenience for a calm state of mind.

All Clear?

The mammogram went well yesterday and the doctor was pleased that she didn't see anything out of the ordinary. The MRI went well also, though I do not yet know the results of that. I hope to hear from my doctor today telling me that everything looks clean and clear.

The Zometa infusion was relaatively uneventful, although it was very strange being back in the infusion room. The nurses there are great and do their best to make the experience as easy and painless as possible. The explained to me that the Zometa essentially pulls calcium out of your system and then dumps it back into the bones which is why bone and joint pain can occur.

I was hoping to get away with no side effect, but unfortunately woke up this morning achy and with chills. These are expected side effects and generally only affect people after the first infusion. I am laying low today and trying to remember that this means it is working the way it is supposed to. No pain, no gain!

Preventative Maintenance

Today I have 3 appointments. The first one is my first post-surgery mammogram to establish a new baseline for future tests. The second one is an MRI for the same thing. This will be my new preventative maintenance routine. I will have a mammogram and an MRI every six months to make sure there has been no return of the cancer. Though I have no reason to expect that there is any cancer left, I am still just a little bit nervous. The last time I had a mammogram was in May and the outcome was a breast cancer diagnosis. In addition, I now have quite a bit of scar tissue from both the surgery and the radiation so it makes reading of the mammogram and the MRI just that much more difficult. The good news is that the diagnostic center that I am going to will go over the results with me at the appointment so I won't have to wait and worry about the results.

The 3rd appointment is my first infusion of Zometa. I will have these infusions twice a year for at least 3 years. This drug is currently used for osteoporosis and is also used for people diagnosed with advanced stage cancer that has metastasized to the bone. In my case, it is preventative. It is found to help reduce the risk of a spread to the bone. Though I hope to not have any side effects from this particular drug, some people do have flu like symptoms after the first infusion and sometimes bone and/or joint pain. I can't say I like the idea of going back into the infusion center where I did my chemo, but I will try to remember that I am lucky to be getting Zometa as not everyone has the opportunity. I am happy and thankful to be at the preventative maintenance stage.

Perseverance

I saw this in our neighborhood and couldn't resist putting a picture of him up. During the snow, some kids in the neighborhood built a snow man and decided they didn't want to lose him when the weather warmed up. It is now 50 degrees outside and the snow in our neighborhood has been gone for at least a week, but the snowman still stands.

I thought he was a great lesson in perseverance. If you don't like your circumstances-change them!

Zometa

I had a follow-up appointment with my oncologist today. Among other things we talked about, I asked her about prescribing Zometa for me since I couldn't get into the clinical trial that I wanted to. This is why I love her. She immediately said yes and prescribed semi-annual infusions of Zometa. I will receive my first one on January 13th.

Zometa is a drug primarily used for osteoporosis. However, it has been found to drastically reduce the risk of recurrence to the bone in people with my exact diagnosis--diagnosed young, early stage, pre-menopausal, estrogen positive and taking Tamoxifen. There have been several large studies and it appears that adding Zometa to the Tamoxifen reduced the chances of recurrence by about 30-35 percent. It is not yet the standard of care to prescribe it, but I believe it will be eventually. I am thankful to have a doctor that is willing to work with me. She was voted one of Seattle Magazine's top 3 oncologists and this is why. She lets the patient be part of the conversation.

I'll take 35%. I'll take every 1 or 2 or 10% that I can.

Gone Commando!

Well, I've done it, I have gone commando. I have given up the hats, scarves and wigs! I have unveiled my fuzzy little head to friends, family and now collegues. No one has passed out or driven off the road so I think I am going to stick with it.

I shaved my head on July 16 http://tracy-breastcancerandme.blogspot.com/2008/07/head-shaving-day.html right after my first round of chemo in anticipation of my hair loss. I tried out the GI Jane look, the cue-ball look, the baby duckling look and now I am just going for the "What the heck! It's hair and I love it" look. 6 months is just too long to be bald and have to wear something on your head.

My children have been telling me for months that I look fine and don't need anything on my head. I didn't think I looked bad, I just didn't want to shock the daylights out of people. Now, about that returning grey hair....

Long Term Contract

Now that we are officially into the new year of 2009, people are talking about New Year's resolutions. I actually don't like New Year's resolutions. They feel like a short term contract to me. If you are going to make a plan, make it a long term contract or what is the point?

In looking ahead to this year and many more, here is where my long term contract begins with myself:

1) I will take care of myself. I will make exercise a part of my life and will be mindful of what I put into my body. I will remember that I am worth the effort it takes to be a healthy person.

2) I will make time for fun. Sometimes I forget that fun and laughter are important things. It is easy for me to get involved in my day to day life, complete with stress and worries, but those aren't the times I remember. It is the fun times that I remember and treasure.

3) I will live a broader life. I have a small family, a small group of friends, I live in a small town and I have been content in this place for a long time. My cancer diagnosis has helped me to realize that there is a much bigger world out there that I can reach out and touch. This doesn't mean I'm not happy in my life, I am...I just want to broaden it and continue to learn.

4) I will write. Writing has become something that I very much enjoy doing and I will find a way to continue doing it. I have two ideas for books that I would like to start tackling this year. What I know about writing or publishing books is exactly zero, but if I want to do it, I must put it out in the universe so I can learn.

5) I will work at a job that I love. What a chaotic year it has been for employment for us. I will work at WaMu until March and then I will have the opportunity to find a job that I love. For the most part, I enjoy working. I like being part of something bigger than me and I like bringing value. I have skills and I like being good at something. I also like having the flexibility to have my job be a part of my life-not my whole life.

6) I will raise money towards cancer. Cancer is a miserable disease and it breaks my heart every time I hear of someone who has been diagnosed or has lost their battle. It just has to go away and that is all there is to it. I have to do my part to make it go away.

7) I will treasure my friends and family. They are the reason why I got in the ring to duke it out with cancer. They are what gave me the strength to keep doing it.

8) I will continue to raise amazing children. I almost think they could do this on their own. This is the nature vs nurture argument. Is it the parents that help to make the children great, or do they just come out that way? I think Larry and I are good parents, but we lucked out in the kid department! Our kids are amazing and I am in awe of them every day.

9) I will be thankful.

10) To be continued....