Wednesday, December 31, 2008

From the Mouths of Babes

As this holiday season winds down and the economic turmoil continues, it is refreshing to listen to the voices of the innocent. As I put my six year old to bed the other night she had a wonderful idea. "Mommy, when I grow up and move into my own house I think you should sell your house and move next door to me. What we will do is drive down a street and pick two houses that are exactly alike. We will buy them and then I can see you everyday even though I am a grown up." I loved this logic.
Somewhere in her six year old mind, it occurred to my daughter that I live a long way from my parents. My husbands family is closer but they certainly aren't down the street. It would be nice to have family close by. As it stands, my children see my parents for short intense visits where we try to cram as much "grandparenting" in as we can for them. It would be nice to have more time on a regular basis.
As she devised this plan, I became a little bit wistful. Where will I be twenty years from now? Hopefully I will be a vibrant sixty five year old. I recently saw my breast surgeon and asked him about my statistics for recurrence. Not one to sugarcoat anything, he said my risk is minimal now but I really won't know if I have licked this thing until I am thirteen years out from the diagnosis. Thirteen years! Wow. That is a long time to be on pins and needles.
For now I will try to put this in the back of my mind and dream about buying a house down the street from my daughter when she is grown and has her own children. I have a ways to go, but I am going to take it one day at a time.

Monday, December 29, 2008

Will I ever Laugh Again?

I finally watched the new "Sex and the City" movie the other night ( I know I am behind the times but the television is usually dominated by the youngest members of our house) and I was struck by something that the character Carrie asked. After having been jilted at the altar by Mr. Big and spending days in bed, she said, "Will I ever laugh again?" What a great question for all of us who have faced adversity. The character Miranda responds that Carrie will laugh again when something is really funny.
The question made me think about how much I really laugh nowadays. I think it is harder for me get a good belly laugh. I am tainted. I look at pictures of me before I had cancer and there was definitely a glint in my eye. Now, in the same Christmas picture, there is a hesitance, a deep knowledge and understanding that this can all be taken away in the blink of an eye. Better not to be to foolhardy and laugh too much. Instead, I try to find joy in the simple moments of life and savor them. It is deeper and more rewarding to try to do this. I am not about laughing and small talk so much anymore. I guess that is good but it is sad too. My eyes show it and I feel it. The feeling of never really letting go because you know that you are different from everyone else now. Your body could be secretly working against you and all you can do is wait and see.
I hope that someday that glint in my eye will return but for now I will just be happy that I can laugh a little bit with my friends and family even if it is with trepidation.

Thursday, December 18, 2008

We will all see how resilient we really are







As I drove in my car the other day(which I do a lot as the mother of school age children), I was listening to a radio program and there was much discussion about resilience. I have not been able to stop thinking about the relevance of this word as the holidays approach and our country is experiencing such economic turmoil. This is truly a time that will test the resilience of all of us. What is resilience? Webster defines it as "an ability to recover from or adjust easily to misfortune or change."


For those of us who have battled cancer or other diseases we have had our resilience tested already. We have struggled our way through surgery and chemotherapy and know the hardship of physical illness. But there are others who will be tested in different ways. I know some people who are on the brink of personal financial crisis and their ability to adapt may be tested soon.


How do we prepare our children to be resilient in a society that gives children everything they could ever want? In spite of the fact that I was ill, I am not sure that my children easily adapt to misfortune. They get upset if things don't go their way. My son was very distressed because I forgot to give him a few dollars for the toy sale at school. It was a simple oversight on my part but it ruined his day. He felt left out and blamed me for his misery. I wonder what, if anything, I am teaching my children when I get reactions like this. As we all know, there is going to be less of everything this year in this economy and perhaps this mistake on my part was actually a good teaching moment. Some families don't even have money for a toy sale. Maybe our mothers had it right all along. Perhaps I need to use the starving children in Africa line a little bit more to get my point across.


Regardless of this, we will push on and hopefully dig deep in our hearts to deal with the hand that we are dealt. It is through inner strength and the help of others that we will continue to persevere in spite of obstacles like illness and financial difficulties in this holiday season.


Wednesday, December 10, 2008

Who should Get Genetic Testing?





I have had a few people ask me lately about genetic testing. I think this is such a relevant topic because so much of the research into the causes of breast cancer and other diseases is centering around genetics with the discovery of the human genome. The human genome is a project which mapped out all of the DNA in the human body. As a result, we know what some genes look like.
In breast cancer, there are two known genetic mutations. They are the BRCA1 and BRCA2 genes. They account for approximately 10%-15% of breast cancers(depending upon your source of information). Carriers of these genes have as high as an 85% chance of developing breast cancer. There are certain people in the general population who are at higher risk for carrying on of the genes. They are:
-Women or men with several relatives with breast cancer
-Women or men with relatives diagnosed with more than one primary breast cancer
-Women or men who have a relative with ovarian cancer
-Women or men with Ashkenazi Jewish heritage
-Women or men who have a male relative with breast cancer
Women and men can both carry and inherit the gene. For example, my friend found out she had the BRCA1 gene which she inherited from her father. Her aunt, her father's sister had breast cancer. He passed the same genetic mutation that his sister had onto his daughter. She had her children and then decided to have a prophylactic bilateral mastectomy and an ooperectomy to mitigate the risk of breast cancer in her future.
Should I get genetic testing? My situation falls a little bit into the gray area here. My brother had colorectal cancer when he was thirty eight and I was diagnosed with breast cancer when I was forty four. Do we have BRCA1 or BRCA2? I will let the genetic counselors make the call on that. What we probably have is some genetic mutation that has yet to be discovered so they may not recommend testing at this time because the test runs approximately $3,000. The insurance companies don't really want to pay for someone who is not considered to be high risk to have the test.
If you are concerned about a strong family history of breast cancer and the possibility of carrying one of the genes, I would suggest that you talk to your gynecologist about the likelihood that you are a carrier. They know your individual situation best and can steer you in the right direction.
As for me, I am going to fill out the paperwork and hope for the best. I would like to know if I am a carrier primarily for the sake of my children and their future.

Tuesday, December 2, 2008

Walking For the Cure




A week and a half ago, my friend Katie walked in my honor in the Breast Cancer 3 Day benefiting Susan G. Komen for the Cure in San Diego. I was quite touched by this gesture. At first I was surprised that I could motivate someone to walk sixty miles in three days,but then I remembered that Katie had been at my side right after my mastectomy. She had seen my suffering first hand. She wrote a brief description of what she witnessed on her Breast Cancer 3 day web page and the story even brought me to tears. It was and is hard to believe that was me just one year ago.
Katie was on a team called Walk Now, Wine Later! There were fifty five members of her team and they raised over $176,000. San Diego alone raised over $11 million from the 5,000 people who walked.
I asked her to briefly describe the event and she said it was like going to cheerleading camp with thousands of strangers dolled up in pink. She described the mood of the event as festive and positive but also serious. These women are walking to find a CURE for breast cancer, sooner rather than later. She said that over the three days many walkers stated that the world should feel like this more often. A world filled with love.
She described the end of the walk in the following words. "When the survivors walked the final block of the the 3 Day, they walked through a tunnel made up of the 5,000 women and men who walked. Each of those walkers held one shoe high in the air to toast these strong and brave survivors. At that moment, I knew that this was much more than a fundraiser. It was a powerful wave of inspiration and a clear sign of a CURE to come."
Thank you Katie and all of you out there who are walking to find a CURE. For our daughters and their daughters, let's hope that it is soon.

Tuesday, November 25, 2008

Eating For Health and Giving Thanks








As this holiday approaches, I reflect on all that I have to be thankful for. So much has happened to me over the last year that as I sit here with a head of hair, my health and happiness, I breathe a sigh of relief and look forward to eating turkey. Of course my mind eventually wandered to food. What I started to think about is the change in my eating habits over the past year. The transformation has been dramatic. First there is what I ate before cancer, then what I ate during cancer and what I eat now. These are all very different things.
Before I had cancer, I ate a lot of refined sugar, a lot of animal protein and very few raw fruits and vegetables. My favorite breakfast was a cup of coffee and three oreo cookies. Yum! I would have a piece of chicken and some nuts for lunch and then a salad and some sort of animal protein for dinner. I thought that I was eating pretty well so I never took any vitamin supplements.

Then I got diagnosed with cancer and I ate everything in sight. I ate three squares and two snacks each day to "gain my strength" for the battle ahead. I put on a quick five pounds before my surgery as I enjoyed every piece of chocolate cake that came my way. I was sure that I would lose the weight after my surgery and sure enough I did.

When I underwent chemotherapy, I actually gained the weight I had lost right back. I kept trying to quell the nausea from the chemo with food. I craved a french fries and a chicken sandwich on many occasions and ate them whenever I could. Unfortunately, the greasy french fry cure that works for a hangover doesn't quite cut it for chemo. It just added inches to my waistline. Eventually, I would find that ginger calmed my stomach and chicken with brown rice in a little bit of cream of mushroom soup was a calming meal for my tumultuous tummy.
Now I have finally dropped a couple of the pounds that I gained and I am getting back into good physical shape. I cut out most of the refined sugar in my diet. I stick to whole grains and very little red meat or chicken. I try to eat salmon to boost my Omega- 3's and lots of berries for their antioxidant properties. I take vitamins regularly now to try to boost my immune system so it doesn't go haywire again.

This year, as in years past, I will enjoy eating too much and watching football on the last Thursday of November. I can't wait for some pumpkin pie and whipped cream! Happy Thanksgiving everyone.

Friday, November 21, 2008

Young People Making a Difference















video
I had a chance to meet with some young women who are doing something to make a difference in the fight against breast cancer. They are the Villanova Students Against Breast Cancer. Earlier this week they invited me(or maybe I invited myself) to join them as they prepared cupcakes for a fund raising event. They made cupcakes in different "bra cup" sizes and sold them on campus. The proceeds of their efforts will go to the Linda Creed Breast Cancer Foundation, a foundation that strives to help women who are uninsured or under insured to get mammograms. The website is http://www.lindacreed.org/.
Margaret Mooney and a friend started the club last year after Margaret's cousin was diagnosed with Stage IV breast cancer at the age of twenty one.
As we sat and talked, I shared my story of discovery, diagnosis and surgery. I then asked them about their reasons for joining an organization like this; why breast cancer? Sadly, each one of them has a personal story that has brought them to the group. Two young women are the daughters of breast cancer survivors. One young woman lost her aunt last fall to the disease. As she told her story, a tear came to her eye. This is a heartbreaking disease.
It seems that younger and younger women are being diagnosed each year. I don't have the medical data to prove it, but antecdotally it seems to be a trend.
That is why I hope that these young women will continue their good work and that more young women like them continue to join the cause.

Tuesday, November 18, 2008

My Favorite Gifts







Let me preface my comments here by saying this; every gift that a cancer patient receives is wonderful. They come from people who care about you and I am thankful for each and every one of them. Receiving these gifts is one of the only upsides to having this inconvenient disease. Thanks everyone.
But I have to admit that I did have my favorites. The robe to the left of this text is an example of such a gift. It is so soft you just want to sink into the soft pile and never get up( I know the chemo does that too, but this is the good not wanting to get up). I slept with this robe over me all of last winter while I was sick. I don't know why, but it has taken on a symbolic role in my life. When I wrap myself up in it I feel safe. I still sleep with this robe on top of my covers and I wear it every morning as I make breakfast for my family.
The other essential is a good pair of pajamas. Cancer patients spend a lot of time in bed and we women like to look good even when things are not going our way. A snazzy pair of pj's can go a long way to perk up the patient. I got some really great ones and I loved having a nice wardrobe of sleepwear to choose from.
I will also say that any kind of headgear is always a great gift. Keep in mind that your recipient will be bald so make sure it nice and soft. I loved all the scarves and caps that arrived at my doorstep. Bandannas are good and depending on the time of year, a nice winter hat is an idea.
Bubble bath is a simple pleasure that makes the time spent recuperating from the chemo treatments more bearable. I got some peppermint scented bubble bath that I loved.
Socks, books and magazines are god sends for the chemo days. I got some nice fuzzy socks that I wore as I got my infusions. I also liked to read about breast cancer survivors and their stories. Nothing too heavy, just true stories about women like me. Magazines of any kind are a good choice because everyone loves to flip through a magazine at the doctors office.
As I said before, I received hundreds of gifts that I loved but these are some that I found to be most useful.

Friday, November 14, 2008

Telling the Children




Telling my children I had cancer has to be one of the most difficult conversations I have ever had. It is one that I tried to prepare for as best I could, but finding the perfect time, setting and words proved to be a challenge.
I was diagnosed in August of 2007 right before our annual beach vacation. The children were four and seven. My husband and I both agreed that we should wait to tell them anything about my diagnosis. I hadn't chosen a course of treatment and we weren't sure what the extent of my cancer really was. We felt like we needed to spare the little ones any undue pain until we knew the facts. We went on our vacation and tried to pretend like things were normal. Upon returning home, we scheduled my surgery for October.
I made a few phone calls to people I knew with a background in child psychiatry. My friend explained that I should let the children be my guide. "Don't overload them," she said, " Their little brains can only process so much at a time."
So when it came time for my surgery, we told them that I was having surgery on my arm. It was a half truth; I did have lymph nodes removed. They seemed to do pretty well with all of the changes that were going on and they certainly realized that mommy was sick.
I asked my husband, a trained psychiatrist, when he thought that we should tell the children I had cancer. "Never," he responded. I started to laugh hysterically. "You are joking, right?" I asked incredulously. "No I am not. The children don't ever need to know." I could appreciate his concern for their mental health on the one hand, but the reality was that my hair was going to fall out soon and I would have some explaining to do. "How am I going to explain my hair loss?" I pursued. " You can just wear your wig all of the time, they will never know." He said with a finality that signaled the end of the conversation.
Now my husband is a very intelligent man, so you can imagine that this came as a great shock to me. Then it dawned on me. He was still in denial. This wasn't happening to us, it was not real.
I went along with this plan for a while, not wanting to upset the apple cart, and tried to convince him that we needed to tell them something before I lost my hair. I was afraid that one of the children at school might mention my cancer to them. People knew about my illness and had probably told their children. I wanted them to hear it from me first.
Fortunately, Luke found my wigs I had been hiding in a closet and forced our hand. "Mom, you have been lying to me about something." he said in a sad voice. "I found some wigs. Why do you have them?" I proceeded to tell him that mommy was going to have to take some very strong medicine and it was going to make my hair fall out. I thought that this would mollify his curiosity. "Why do you have to take the medicine, mom?" He pressed on. "Well, Luke, mommy had cancer but it is all gone and the medicine is to make sure it doesn't come back." There, I said it. I watched and waited for his reaction. "Okay mom. Is it like Uncle Jim's cancer, where he is all better?" I breathed a sigh of relief. " Yes, sweetie, it is just like Uncle Jim's cancer. I am going to be just fine." I said, choosing to believe this to be true.

Monday, November 10, 2008

On the Subject of Hair...




















When it really comes down to it, I am very vain. I learned this when I lost my hair during my chemotherapy. It bothered me more than losing my breasts believe it or not. I am much more attached to my hair than I ever was to my A cup chest.


The other issue for me is that I am really not that attractive without my hair. Many of you gorgeous women can pull off going bald or simply donning a headscarf. I am not so fortunate. I looked too much like my seventy two year old father. Sorry dad!

My children didn't like seeing me bald either. It reminded them that their mommy was sick. They were scared when I took my wig or hat off. I tried to spare them any more trauma in their young lives. They were only five and seven at the time. It was surprising how much the hair loss affected them. When my son found my wigs in the closet before my hair fell out, I had to deal with his anxiety about my illness and what hair loss represented to him. Bridget had a sense of humor, as usual, and at one point even modeled my wig. Thank goodness for Hannah Montana.


My approach to this dilemna was to wear a wig most of the time I was out of the house and a hat at home. My hair started to fall out on Christmas day of 2007. "Take lots of pictures, dad" I said, " My hair is going to be gone by tomorrow." And sure enough it was.


I felt like my wig gave me a little bit of anonymity from my disease. People who didn't know me didn't know that I had a wig on. I could go to the grocery store without the stares or abashed looks. People who did know me often forgot I was wearing a wig. In fact, I went to a party and friends remarked," Oh, you didn't lose your hair." I was as bald as a newborn baby but my wig looked so much like my real hair you REALLY couldn't tell the difference. I felt a little bit pretty and a little bit normal.


It made me think about how cancer differs from many diseases. When someone has diabetes there is no Scarlet "D" on their chest announcing to the world their condition. We have to deal with other peoples emotional baggage about this disease as we walk around with our bald heads. Personally, I didn't have time for their baggage, I have enough of my own. Maybe it is the Southern girl in me coming out as well, we southerners want to put others at ease.

Having said that, I think it was easier for me to wear my wig. I wanted some dignity and privacy in my life. I wanted people to see that we cancer patients are just like everyone else- dealing with the hand we are dealt. It gave me some power over my situation.

I got my wig on the internet at http://www.paulayoung.com/. It was $150.00. My friend Katie and I got on the website and looked at the different wigs. I ordered several; a couple of human hair wigs and a couple of synthetic hair wigs just to see the difference. I found the human hair wigs to be softer and more realistice looking. I sent the other ones back. Then I took one of the two I chose to my hairdresser before my hair fell out( I kept the other as a back up, just in case). She cut it and colored it to look just like mine.
In the spring, I even went skiing in it. I was afraid that it might fall off as I went down the mountain but it stayed in place. Swish, Swoosh, Swish, I even had a little bit of fun thinking about the shocked faces that might appear if my hair were to actually fall off on the slopes.
It is eleven months since my hair fell out and it is taking forever to grow. I wasn't prepared for this. I thought it would come in alot quicker. As Luke and Bridget say," Mom, your hair just keeps getting curlier and not longer." It is true. It is also a different color than it used to be. I look in the mirror and I often do a double take. I guess it makes sense though. I am a different person than I used to be. Maybe my hair is simply the outward sign of the metamorphosis.


Wednesday, November 5, 2008

Another Day and Another Woman Diagnosed

In the past two weeks I have heard of three women who have been diagnosed with breast cancer. Now, I will say that I don't know these women personally, they are friends of friends, but I still find it disturbing that I keep hearing more stories about this everyday. How many people have you heard of that have been diagnosed lately?


Dr. Susan Love is doing a huge study of women to see what is causing this epidemic. It is called The Army of Women and The Sister Study. Her goal is to get one million women to sign up for the study. She needs both women who have had cancer and those who have not. You can sign up on her website which is http://www.dslrf.org/. We need to find out the cause and find a cure.


I also wanted to give some helpful websites to those who have been recently diagnosed. I found these to be very helpful with Staging information and the medical facts.

http://www.cancer.gov/

http://www.nci.nih.gov/

http://www.breastcancer.org/

http://www.CircusOfCancer.org


Sadly, I also learned that a friend's sister who has been battling Stage IV cancer for five years is not doing so well. It is hard for me to hear these stories. She is hanging on for the moment but they don't know how long she has. This story brings home the reality of this disease. So let's join that Army and make a difference.

Saturday, November 1, 2008

It was just another Tuesday Morning...

Last week I got a speeding ticket and I was elated. This may seem like a strange reaction to have but it was the kind of thing that used to happen to me before cancer. You know, the day to day bad stuff that you curse yourself for and move on. I was trying to get my son to choir practice before school began and I was going 28 mph in a 15 mph zone. All of a sudden I see the flashing lights in my rear view mirror. "Oh no" I groan, as I pull over right in front of the entrance to my sons school. The officer walked to my side of the car. " What did I do officer?" I ask, truly unaware that I have just been gunning the gas pedal in a school zone. "Ma'am, does your son go to this school?" He asked in the condescending voice that every police officer has. "Why yes," I say as sweetly as I can hoping for mercy. "Well then you better slow down!" He took my license and I realized there would be no warning, he was using me as an example. So there we sat with him writing the ticket right in front of my sons school. As all the law abiding mothers drove past getting their children to choir practice on time.

My son is eight and of course he was mortified. "Mom, everyone is looking at us. Can't you just take me in, I am late." I explain to him that I have to wait for the policeman to write a ticket and that he will be late for choir practice. As the minutes tick by and we see car after car enter the school drop off line, my sons agony increases. I am not upset about the ticket as much as I am upset that he is so embarrassed. "Mom, I am not going to school," he states as if he has a choice. "Oh yes you are buddy," I say emphatically, "Going home is not an option." He begins to whine because of the combination of being late and the embarrassment of being pulled over in front of school is all too much for him. "Well, you better get over it Luke, there are much worse things in life. Like getting cancer. So get out of the car." I said as I was finally able to drop him off.

It wasn't really fair of me to do this. It wasn't the worst thing in the world for my children when I had cancer. Their day to day lives were largely unaffected. They had the support of a large community of women from across this country and from different parts of my life who came to our aide to help us. I wasn't with my children alot of the time I was sick but my surrogates were. They were there to take my children to school, make us dinner, bathe me and rub my feet. Several of my friends actually moved in with us for short periods of time. It was a hard thing for me to do. To give up control of my life and let other people step in for me. Would my children be ok? They would have to be. I didn't have a choice.

So when Luke was embarrassed about being pulled over in front of school, I was lucky. His is a reaction many eight year olds might have in that situation. How thankful that I am for this. They haven't been changed too much, although they have their scars too. They get a little bit too worried when I am away for too long. They cry a little more often than they used to. They are all too familiar with the word cancer.

All in all though, we were all saved by the many women who came to my side day after day for eight months. It changed our lives for the better.