Reflections on 2008

New Year's Eve 2008. We are going to Portland to spend time with friends and to celebrate the New Year, and what a year it has been. There is definitely part of me that says "Good Riddance" to 2008 but really, I feel like before I look forward to 2009, I have to pay my respects to a truly life changing year. It brought many things-some good and some not so good.

Loss: We lost Larry's son to a blood clot and our friend Marty to cancer. We lost our carefree life. Turmoil: Larry and I were both laid off from our jobs at different times. My layoff was a notification and I will be employed at WaMu until the end of March. In the face of everything else that happened this year, not being sure of our financial security threw our lives into more turmoil. Devastation: Not only was I given the devastating news that I had been diagnosed with cancer but so were many friends: Michael, Marty, Ankie and Shana. Pain: Larry and I both had surgeries this year but ours was not isolated to physical pain. The mental pain of being diagnosed with a potentially deadly disease is significant. It is immense-this possibility of dying and leaving my children and family. It is immense for everyone who loves me as well. No matter how hard we all try to stay positive, the fact remains that people die from cancer and I do not want to be one of them. Fear: The fear of the unknown when being diagnosed is almost tangible. The fear that there was more cancer than we were aware of, fear that it would win, fear that the treatments would be unbearable. I could end my reflections of 2008 there and say that it was an extremely miserable year, but it wouldn't be a very true reflection. It was miserable at times....really miserable, but that wasn't all of it.

Joy: In direct opposition to the devastation came the joy of finding out that my cancer was contained in one breast. We also found joy in everyday things; time with friends, good food, special events, sunshine and lots of laughter. Gratitude: I'm an independent person. I don't often need help from other people but I can't say how grateful I am for the amazing support of family and friends. I will never understand how people can battle cancer on their own. There is simply no possible way I could have done it without the great people in my life. Strength: I have many people tell me that I am brave and courageous but I don't see it that way. It's not like I had a choice in the matter; I couldn't just roll over and die, I had to get up and fight. What I do see is that I have more strength than I thought. Not only do I have strength, but so do my husband and my children. They are really the brave and courageous ones. They did have a choice and they chose to get in the ring with me and thank God they did! Pride: I have been proud of my children since the day they were born, but I am so proud of my family and how they have handled this. They have handled it with grace, compassion, determination, humor and love. Isn't this what we want from our children and spouses? To know that they can handle the hard things as well as they can handle the easy things? Happiness: Does it seem odd to say that in the year that I have been diagnosed with breast cancer that I would find myself to be happy? I am. I am very happy with my life and have found a certain confidence in myself that I didn't have before. I have found a joy in expressing myself through writing-something I didn't know that I needed. Clarity: My priorities are defined in a much different way since my diagnosis. Friendships are important, family is important, my job is important and my health is important. My health! I have ignored it for many years and been lucky. Now I get to pay attention to it and be grateful to do so.

2008 was a terrible year in many ways and I wouldn't have wished it upon myself or my family. But now that it is done, I recognize it for what it was...life changing. It brought as many good things as it did bad things and I am grateful for the opportunity to recognize and appreciate both. I will not go so far as to say that I am grateful to have cancer. I'm not-I still hate it. But I am grateful for those positive things that it has brought into my life and those things that I have had the opportunity to view in a different light. I am grateful to have made it through so that I can lay 2008 to rest with the dignity that it deserves.

Gathering of Family

Last night we hosted the rescheduled Holiday Open House that we have been hosting for several years. This group of people is a collection of family. Not everyone is related to each other, but they are all related to me in some way.

I am happy to say that despite more snow falling, everyone braved the roads to join us. I think everyone suffered from a bit of cabin fever over the past couple of weeks so there was lively conversation all around and as usual, plenty of food and wine.

For many of us, this is the only time that we get to see each other so there is much to catch up on. Everyone has had an eventful year and I think we are thankful to be able to connect with each other. I know there were some who were worried that I was taking this on and I hope that when they saw me, they were reassured that I am doing fine. Besides a lingering cold, VERY short hair and some odd, chemo related fingernail issues, I am doing well. I never considered not hosting what has become an annual event.

My girls received a Wii from Santa and have spent almost all of their time since then playing it. When the cousins came over, they joined them in playing the Wii games so we didn't see much of the kids. We were able to capture this picture of 7 cousins when we convinced them to sit down for a brief moment. My two daughters, my sister's three daughters and my cousin's two sons. I am thrilled that the kids enjoy each other's company as much as the adults enjoy theirs. Here's to family.

The Stockings are Hung

It is Christmas Eve and everything is ready. The stockings are hung, the Christmas trees are done, the presents are wrapped. We have told the girls that they cannot get out of bed before 7:00am. We'll see how that works.

I have had a difficult time figuring out what to give to Larry for Christmas. It was no problem for me to find gifts for the girls, but have chosen and discarded several ideas for my husband. In part, it is because he is difficult to buy for. If he wants something, he buys it. He doesn't wait for birthdays or holidays. Mostly though, I can't possibly come up with anything that feels adequate. What do you buy someone who stands by you while battle cancer; a tie? A coffee mug? A flat screen?

As with other marriages, ours has had its ups and downs. It has not been a perfect marriage and has taken work. If you would have asked me 16 years ago when I met him if he would have been the best person standing by me should I ever have to go through a battle as serious as cancer, I'm not sure what I would have said.

But he was the best person. He didn't come in like a knight in shining armour and take over. He didn't talk to my doctors or try to make decisions for me. He didn't treat me like I wasn't able to make my own decisions. What he did was allow me to be strong and make my own decisions and he stood by each and every one. On those days that I ran out of strength (and they were many) he gave me his. He remained rock solid for the girls and for me. He did not waiver in his determination to keep our life as normal as possible. What he did was allow me to fight cancer in my own way but stood behind me the entire time in case I should falter.

He has told me many times that he wishes he could take the cancer for me and be the person who was sick. While I know this comes from a place of love, I wouldn't give it to him. I could never be the watcher. I am a terrible back seat driver and am too much of a control freak to not be in charge. I could not do what he has done. I think it takes more courage and strength to be the person who has to stand by someone than it is to be the person who takes the action.

What I have learned is that I love my husband without a doubt-and he loves me the same way. We are the right people for each other. He is someone that I am grateful to have in my life. I am proud of him and I am proud of us. We are a very powerful team. We are raising amazing children and in the face of something pretty devastating, we know how to stand by each other.

So does Larry have presents under the tree? Of course he does. But none of them will ever be adequate enough to thank him for what he has done for me this year. None of them will be good enough to explain to him how very much I love him and how glad I am that I married him.

May your Christmas bring you the kind of love that I have and may you feel blessed in whatever gifts come your way. I know what my gifts are and they don't come in a box.

The Best Laid Plans

Each year, we host a Holiday Open House for my family on the Sunday before Christmas. We have done it every year for several years, despite busy schedules, new babies and wind storms. This year I was determined to not let cancer put a halt to this tradition. Our open house was scheduled for today and we were ready to have everyone over. The house is clean, the lights are up on the house, the tree is up, the menu is planned. We were ready.

If I have learned anything this year since being diagnosed, you would think it would be that not everything goes the way I plan. I certainly didn't plan to spend the majority of 2008 fighting cancer and despite the fact that our Open House is always planned for December I didn't plan for snow. Mother Nature had different plans than I did and has blanketed the entire Northwest and brought all of us to a screeching halt.

I am disappointed that we had to cancel but feel good that everyone is safe and warm at home and not navigating icy streets. Once we made the decision to cancel, my day opened up suddenly in a way that I had not anticipated. We had NOTHING that we had to do! We were given a gift that I would not have expected-time. Today the girls played in the snow and sledded down a giant hill. I got to spend a leisurely afternoon wrapping presents. This is usually a chore that I squeeze into stolen moments late at night when I am tired and would rather be in bed. I don't usually get to enjoy the labor of love that it should be. Larry watched the entire Seahawks game in peace. I cooked dinner with my daughter and we ate it while watching a Christmas movie.

Once again I have learned that sometimes good things come from what I didn't have planned. Now don't get me wrong...we will reschedule the Open House for the day after Christmas. I'm flexible enough to take advantage of a change of plans but I'm also persistent and determined. Cancer may have brought some good things into my life, but it isn't going to stop me from keeping my original plan of having a long, healthy, happy life.

The Power of Words

I love this time of year when I get to hear from all of the people that I love. Christmas cards come in the mail almost every day and I display them in my kitchen where I can see them every day.

This year I had to take down other cards to put up my Christmas cards. Cards of love and support from friends and family as I have gone through this breast cancer journey. There is power in words. Some make me smile or laugh. Some make me cry. These are some of the words that I find in these cards that have helped me through....

We hope you are feeling better...To let you know you're thought of every day....Be well my friend....Rest, Relax, Recover....You are amazing...Keep your great positive attitude and you will be on to better things soon....If you need to lean awhile, we're here....We think you are beautiful on the inside and out....Our wishes go out to the universe to heal and comfort you....I have a million words and no words at all...You are very special to me....You are surrounded by love and support....We're with you every step....You are so dear to all of us.....It is a long process and you are on your way....In the tough times now and ahead, be sure in your family and friends.....You are spirited, you are strong...You are an amazing woman....Remember I am here to share the rainy times too....Hang in there....Pretend I am with you, because in my heart, I am....We are adding our strength to yours......Wishing you strength, peace and courage....I'm so proud of you....Be strong....Be the hero, that's you.....One day at a time....I'm here for you....Today is a better day....You're a fighter, a survivor and a believer.....I'll always be here for you....Hope every day is better....You are fabulous....Whatever it takes....I'll be rooting for you.....

Our thoughts are with you....My thoughts....You are in our thoughts....thinking of you...Good thoughts....Our prayers are with you....We pray....I am praying....Our prayers...We love you....I love you....Love you....Lovingly....Love....Love....Love.

And this quote which I thought said so much.

"In this world, there is no force equal to the strength of a woman determined to rise."

Traditions

Every family has their traditions and when you have children, you either pass them on or create your own. We have done both. When I was growing up, my dad painted a holiday scene on our windows each Christmas season. I remember watching him do it and waiting patiently for the finished product. Though he was a much more talented artist than I am, I have carried on this tradition in my own way. It is something he passed down to me and I am now passing it on to my girls. They are excited every year when they see the paint come out and know that our windows signify the beginning of the holiday season for us.

For the last several years we have hosted a holiday open house for my extended family the week before Christmas. We started this tradition out of necessity. It was becoming impossible for everyone to get together once they had their own families, step-families and in-laws. It has since become something that Larry and I look forward to and the girls look forward to. They start asking about the date of the Open House right after Halloween. Traditions are important to them and even things that we didn't know were traditions, they have decided are.

Tomorrow I go to see the Hereditary Genetics Counselor at Swedish. I will be tested for the BRCA1 and the BRCA2 gene-the only two genes known to predict a higher risk for breast cancer and I will ask that Larry be tested as well. I don't have other people with breast cancer in my family, but I do have other types of cancer that may or may not be related. Larry has breast cancer in his family as well as other types of cancer. Though I will be very surprised if I do carry the gene, I want to know one way or another where both of us stand. I'd like to make sure that I am passing on an appreciation for painted windows and not an increased risk.

Songs of Joy

Darci is in the choir at her elementary school and today they sang holiday songs for the senior citizens at our local community center. I spent most of the time watching the audience for their reaction to 125 kids singing for them. I have to applaud Debbie Folkerts the music teacher for her selections. I could see that all of the seniors were touched in some way by one or more of the songs.

They sang a fun reindeer song first to get the crowd going. Then a Hannukah song with Hava Nagila. I love the way the words in this song just slide over the notes. I saw several people singing along with this one and was so proud of the kids that they were able to represent beliefs that may or may not be their own. They also sang a Kwaanza song celebrating this African American holiday.

They sang a swinging holiday song that had many toes tapping. They finished with a couple of classics, Jingle Bells and Rudolph the Red Nosed Reindeer. When they finished, all 125 of them went out into the audience to wish the seniors Happy Holidays. It was a joy to watch their reactions as they were completely engulfed in a sea of kids.

I had to think that this is what it is all about. These people have undoubtedly had ups and downs in their lives. I'm sure they have grieved and suffered and had joy and celebrations. In the end, it is the experiences that bring us joy that we remember. What I saw on each of their faces was joy and wonder-125 kids strong.

Trials and Justice

Yesterday I went in to Swedish Hospital to talk to the research coordinator for the clinical trial that I asked to be in. This particular trial fits my situation perfectly. It is for early stage breast cancer patients who have completed chemo and radiation and are taking tamoxifen. I specifically asked to be in this trial because it adds bisphosphonates to the tamoxifen regime. Bisphosphonates are drugs generally used for bone loss, such as osteoporosis. They have been found to have a significant impact on distant recurrences of breast cancer to the bones. This trial measures the use of tamoxifen with bisphosphonates administered in different ways, via IV or taken in pill form.

I was really excited to be part of it since the benefits are significant. Unfortunately I was told that I was too far out from chemotherapy. The people who run the study set it up as part of the criteria that the participants were no more than 8 weeks out from chemo. I am 12 weeks out. I never thought I would be disappointed to be further away from chemo. I am extremely disappointed that I can't be part of it. I am going to do whatever I can to get my doctor to prescribe Zometa (the bisphosphonate) for me so that I can get the benefits associated with the study.

Since I am 12 weeks out from chemo, my body is recovering from being assaulted. I have my energy back and I feel really good. I feel healthy and whole. The injustice of it all though is that now that I am feeling healthy, I still look sick. Though my hair is growing and people continue to remind me that it is, I still look like "Cancer Girl" when I look in the mirror. My mutinous eyelashes and eyebrows decided to take a hike at about 8 weeks after my last chemo and though they are coming back, it just isn't fast enough. What kind of justice is it when the hair on my chin, under my arms and on my legs comes back with a vengeance but the hair on my head is growing back at a snails pace? Drat! I want to look as healthy on the outside as I feel on the inside. Every morning I look in the mirror and though I see someone who is healthy and happy and I am thankful for that, there is only one word that comes to mind when looking at my head....GROW!!

5 Reasons

Last May when I was diagnosed, my friend Mindy asked me if I would like to participate in the American Cancer Society's Relay for Life. As it happened, it was the same week as my surgery so I couldn't participate. And to be honest, my head just wasn't in it. I was reeling from the news that I had been diagnosed with breast cancer. I couldn't really think past the fact that I could lose my life and that I was in for a fight.

I had friends who participated in the Susan G. Komen 3 day in September as well. It just so happened that the timing of the 3 day began on the day after my last round of chemo. Once again I couldn't participate and to be perfectly honest, I was pretty engrossed in my own battle. I wasn't ready to take on anyone else's.

Now that I can look in the rear view mirror a bit and distance myself from the shock of being diagnosed and the physical demands of going through therapy, I find myself wanting to do what I can to participate in the larger fight against cancer, not just my own.

There are many reasons for wanting to do this. Part of it is selfish. I want to find a cure for breast cancer so I don't have to go through it again. Part of it is more altruistic-I don't want ANYONE to have to be diagnosed with ANY kind of cancer.

I have just signed up for the Relay for Life on Mindy's team for 2009 and will plan to participate in the 3 day in September as well. My reasons? See the beautiful girls above? My two daughters and my three nieces. I never, ever, ever want them to hear those words that I heard. You have cancer.

http://main.acsevents.org/site/TRC/RelayForLife/RFLFY09GW?pg=peditor&fr_id=15243&px=8683152

‘Cancer isn’t going to win’

I have been writing in the blog for about 6 months now to keep friends and family updated. For me, this has had the feel of having a personal conversation with friends over coffee. Many people have encouraged me to expand my writing. With that in mind, I took a big breath and submitted a story to my local paper. I am happy to say that it was accepted and has been published. Here is the online link to the Maple Valley Reporter. I am out in the world now!


‘Cancer isn’t going to win’

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Wordle

My girls helped me to create this fun image with a tool that they have at their school. Neat huh?

title="Wordle: Breast Cancer"> src="http://www.wordle.net/thumb/wrdl/359957/Breast_Cancer"
style="padding:4px;border:1px solid #ddd">

The Next Chapter

If Chapter 1 was surgery, Chapter 2 was chemotherapy, Chapter 3 radiation, then Tamoxifen must be Chapter 4. Today I will start taking Tamoxifen. I will take it for a minimum of 5 years. Tamoxifen is a hormone blocker used specifically for people who are hormone receptor positive. I am hormone receptor positive for both Estrogen and Progesterone. Historically breast cancers were all treated the same way. Now with the advances that have been made in breast cancer research, doctors understand that not all cancers are the same. Because I'm female, I produce estrogen. Tamoxifen blocks the estrogen from attaching onto cancer cells which causes them to grow. Simple. Like anything else there are benefits and potential side effects. Most likely I will experience hot flashes. Who wouldn't want to have more of those? More serious is an increased risk for uterine cancer. I am counting on the fact that the benefits, which are significant in reducing the risk of recurrence, will outweigh the risks.

Like everyone else at WaMu, I was given notice today on my job status. As expected, I will be laid off, but will be working through the end of March. This is the best possible solution for me. I get the opportunity to be part of the change from WaMu to JP Morgan Chase doing work that I enjoy. The risk is that I may miss out on an opportunity outside of WaMu that may not be available in April that is available now. I hope in this case as well, that the benefits will outweigh the risks. I am ready to take on the next chapter.