Seven Years by Mary Beth

Shortly after midnight on Saturday my daughter and her friend gave me this beautiful card case to hold my business cards.

Sunday was my seven year anniversary as a Breast Cancer Survivor. On Friday, I ordered a cake for myself to celebrate this day.  I don’t really drink, I don’t do drugs and I have never smoked and I still got cancer… so yes I eat sugar.

I asked my closest friend in California, (who was literally the first person to hear the news as the Doctor called me at work) to come over and celebrate with me.

The day started out a little later than I had planned, I was running late for church and the chapel that I attend is very small and difficult to sneak in late. I decided to go to the church that we belonged to when we first moved here (and during my treatment) as their mass starts 15 minutes later. This parish had been talking and planning and raising money to build a new church when we became members. I do believe things happen for a reason and as I sat in the church I became very reflective on the past 7 years. I sat in the old church and prayed to heal and survive when I was sick. Now 7 years later I sat in this new church and so thankful that I am still here.

Cancer changed my life forever, not all bad, but changed nonetheless. I am healed on the outside, but sometimes the emotional side still creeps up on me. A few months back I had a “touch-up” procedure done. Before I left work for the appointment I looked at myself in the mirror and thought outwardly, most people that I meet now, have no idea that I am a cancer survivor. My hair has grown in and they can’t tell that it is much thinner than before. My eyebrows and my eyelashes have grown back and my eyelashes hold mascara again. My scars are not visible when I am dressed. People cannot see the effects of the aromatase inhibitors. But as I lay on the table with the greatest leopard hospital gown on… the tears started streaming down my face. I was back 7 years ago as they wheeled me into the operating room to remove a part of my body. I have learned we must allow ourselves to honor these moments as part of the healing process too.

Today the tears streamed down my face again, so many emotions. Happiness that I am still here, gratefulness for all of the people that supported, prayed and helped me. Sadness for many of the people that I met because of the cancer that are not here anymore. I wrote and delivered a note to another close friend at that time, who had helped me with the kids. Our lives have now taken us in different directions. I sent a thank you text to Lou for supporting me during my treatment. We were close to divorcing in 2006 and then I was diagnosed. We decided to stay together. We tried for another 5 years, but it just was not meant to be.

After honoring those few moments of tears and emotions I was off to enjoy my day. I walked my favorite island and visited my friend who is still recovering from a freak illness. He congratulated me and then asked “did you think you would be sitting here 7 years later?” “Honestly, I was not sure, but my Doctors were.” was my response. They told me it would be 12-18 months of hell and then I would have a greater risk driving on the freeways.

I treated myself to one of my favorite childhood candies while relaxing for a pedicure.

My friend and her daughter came over and we celebrated our friendship… and the girls ate CAKE!

The only part missing in the day was seeing my Dante. This was his weekend with his Dad and his future Step-Mother. Other than that…

I am a survivor.

I am alive.

I have so many amazing people in my life that care about me.

It was a great day.

cross-posted at marybethvolpini

Same Chapter…

…Different Take

Crossposted at Jenster’s Musings

This past Wednesday was just another routine oncology appointment. Into the exam room walked a very dapper White Russian. I’ve only ever seen him in his white coat, but the other day he sported a yellow v-neck sweater, a navy and white checked shirt and a yellow tie with stripes in various shades of blue, all wrapped up in a natty tweed blazer. I commented on his Soviet swag, to which he replied he had lost weight and his coats were too big. He was waiting for his order of new coats to come in, but had gotten so many compliments that he was thinking of cancelling the order.

Once the fashion discussion was over we got down to business. And he started the real conversation with, “There was a study…”

I really hate those words. They usually don’t bode well for me. Which is ridiculous because the reason I and my mother and countless other cancer survivors are healthy and/or alive is because there was a study. But the last few times I was told there was a study it meant something I had been working for, something that was at my fingertips, something I was happily looking forward to was yanked from my grasp.

Here is the opening paragraph of a press release regarding this study from the San Antonio Symposium held in December:

SAN ANTONIO — Ten years of adjuvant treatment with Tamoxifen provided women with estrogen receptor-positive breast cancer greater protection against late recurrence and death from breast cancer compared with the current standard of five years of Tamoxifen, according to the international ATLAS (Adjuvant Tamoxifen — Longer Against Shorter) study.

You can read the whole press release HERE.

Basically it says that there was a decrease in recurrence and/or death rates in the second decade (10 to 14 years) after diagnosis for women with estrogen receptor positive cancer who remained on Tamoxifen for ten years instead of five years.

The White Russian went on to tell me that his daughter is a fellow at Sloan Kettering in New York and their team determined (as is also mentioned in the press release) that this practice should extend to all adjuvant hormone therapies, i.e., Arimidex.

I’m not sure if it was my expression (I am happy to report I was not about to burst into tears, however I bet there was a “you can’t make me” look on my face) or if he really wasn’t sure this was the right course for me, but we talked about it at length. When I told him I often wondered if my issues were side effects or just a matter of my age he told me that I’m too young to have these issues. He also said that quality of life is sometimes more important than reducing a recurrence by a couple of percentage points.

This is a great example of why I am so fond of this doctor. Where I tend to downplay my discomfort and fatigue and myriad other annoyances, he justified them as real and life-altering problems that I shouldn’t be forced to deal with if I don’t have to. Well, that and when he said I was “too young”. I liked that part, too.

So we came up with a plan. I am no longer on the Arimidex and we’ll revisit this in six months. I wasn’t even disappointed that I have to go back in six months again, even though this was supposed to be my last six month appointment. It takes about three months for the Arimidex to be completely removed from the body. Hopefully I will notice a difference in the second half of these six months. If so then I will not go back on the medication. If there is no change I will resume the Arimidex for another three years.

Not entirely what I was hoping for, but I’ll take it. Now I’m just praying there will be a change. Not because I don’t want to go back on the drug – if these problems aren’t drug related then it doesn’t really matter – but because I don’t want these problems.

Once we satisfactorily concluded that whole discussion we went on with the rest of the exam. Which consisted mostly of us talking about our children and college and degrees and the like. He was very exuberant about Katie’s choice of Music Therapy for a degree and field, which I found interesting. This medical doctor – a hard science, bio-chemical type medical doctor – is all atwitter about this up and coming field. To quote him, “It’s been around for a while, but just in the past few years there has been so much literature about its benefits. It’s a really great field.”

The rest of the appointment was pretty routine, including the run through Starbucks for the obligatory White Chocolate Mocha for the ride home in rush hour traffic. I didn’t really want the drink, but there was no choice. The car automatically turns out of the cancer center’s parking lot and drives straight to the ‘bux without any concern for my own will. Really. I was glad for it, too, because it took me forever to get home. Never, ever drive from the general direction of Philadelphia at 4:00pm during the work week. Ever.

***

The second unexpected twist in this chapter came the following day when I spoke to a genetic counselor on the phone to get Katie set up for genetic testing. After a fairly lengthy conversation she told me that I was the one who needed the testing since I was the one who had the cancer. This seemed so contradictory to everything I thought I had been told, but her explanation made perfect sense. If I test negative for the BRCA gene we will know my cancer was not genetic, which means there is no reason to test anybody else. If I test positive, however, then others in my family may wish to be tested as well, i.e., Katie, Taylor, my sisters, etc.

My thought (though obviously my thoughts are not to be trusted) is that this is not a genetic cancer. My mother’s breast cancer was protein positive/ hormone negative and mine was the exact opposite. Most likely if it was a genetic thing we would have had the same tumor make up. The counselor confirmed my thought process, though it’s still not a sure thing.

So in a week and a half I will be meeting with her at 8:00 in the morning -I should have asked if I could bring coffee because, well, you know. It’s me we’re talking about and 8:00 in the morning is early when you have to be clean and presentable. – to go over an in-depth family history and all the fine details about my cancer, my mom’s cancer, etc.

***

To close out this post I want to tell you about an event I went to the night after I wrote The Next Chapter. It was a community night of prayer for some of our local families. One family in particular is a preschool and church family and they were given a devastating blow this past September. Their third child, Eli, was diagnosed with Metachromatic Leukodystrophy (MLD) – a horrific degenerative disease with no cure. MLD is genetic and it was passed on to him by his unsuspecting parents. They then had the other three children tested and while the two older boys are carriers and don’t have the disease, their preschooler, Ella, does have the disease.

As I sat there listening to their mother, Becky, I thought how petty my gripes of the previous day had been. I would take Arimidex, or chemotherapy, or anything every day of my life if it meant my children wouldn’t have to suffer. The heartaches I have been through have no comparison to what this family has been through and will continue to endure. But what faith and strength Becky has. You can read about it at her blog, Fear Not.

***

As for this chapter, maybe I should stop trying to figure it out before I’ve finished reading it and just let God do his thing.

The Next Chapter

Crossposted at Jenster's Musings

 

I am staring at a new chapter of the cancer chronicles. It’s not a bad chapter, precisely, but it has me feeling a little uncomfortable. Or maybe restless. Or maybe I just don’t know what it is I’m feeling.

Next week I see my oncologist for my last biannual appointment. That is a great thing. I am nearly 8 years out from diagnosis and over 7 years since my first No Evidence of Disease report. That is a survivor’s dream.

There are only a few days left of my Arimidex and I won’t be refilling the prescription. Two years of Tamoxifen followed by five years of Arimidex and I’m finally done. The original plan was to be on post-chemo drugs for a total of five years, but somewhere around year four a study indicated that it was best to stay on the Arimidex for five years regardless of how long Tamoxifen had been taken. That was a huge disappointment at the time (worthy of a few tears), but the extra two years are done and I can finally stop the Arimidex.

Earlier this evening I was reading stories from women who had gotten off the Arimidex and how their lives were improved. More energy, weight loss, decreased stiffness and pain, slight reversal of some menopausal symptoms… all things that I deal with to some extent. I want to be excited about the prospect of a better quality of life, but I’m afraid to. I am 47, after all. I’m not supposed to have as much energy, weight loss is supposed to be more difficult, stiffness and pain are just a part of growing older and menopausal symptoms are what you get when you’ve had your ovaries removed, right?

So what if I don’t notice any difference in any of those areas after I stop the medication? What if all my “symptoms” are just a result of my age? I can tell you right now that if there is no improvement I will be just short of devastated. And incredibly furious. Again. The injustice of cancer has a way of causing righteous anger even still.

I was talking with two of my co-workers today and I told them that I don’t want to be a “new” me. I just want to be the old me. The me that I was at 39. Or more specifically, the me that I would be today if I hadn’t been derailed by the monster. Of course, I have no idea what that me would be. I just know it wouldn’t be the me I am. But maybe I’ll be much closer to that me after I stop the Arimidex. I guess time will tell.

There’s more to this chapter than this, though, and it goes beyond my own personal battle. This afternoon I started the process to get Katie genetically tested. When she was about 13 my oncologist told me that I would want her to be screened when she was 18 because some of her life choices would depend on whether or not she was genetically disposed to breast cancer. At the time 18 seemed so far away.

It hurts my heart that I’ve done this to her and Taylor. We don’t even know if this is genetic, but just the fact that Katie (and possibly Taylor) has to go through the testing is more than I think either of them should have to go through. I feel responsible and guilty and I’ve never been one to feel guilt over much of anything. But this? I want to heap burning coals upon my head. Even though I know it’s not my fault. And yet…

I know I’ve said this time and time again over the past 7 years, but I really thought once I was through with treatment and reconstruction everything would be normal again. What I have found is that cancer has a ripple effect and I will never be completely free from it. And sometimes that’s exhausting.

But then I remind myself that I don’t have cancer and I am healthy, quirky aging and/or side-effects aside. Even more important is that my children don’t have cancer and they are healthy. I have a husband who adores me, kids who love me, great family and friends and I am happy.

So next week I’ll go see the White Russian and he’ll say how great I’m doing and he’ll send me for a dexascan to see where my osteopenia is (that will hopefully eventually be reversed since I’m stopping the Arimidex) and then he’ll tell me that I don’t need to come back for another year (which will make me happy and sad all at the same time). And sometime soon Katie will go get tested to see if she has the BRCA gene (which I don’t think she does) and she can then make the educated choices that a young woman needs to make.

And then I can move on to the next chapter.

One Door Closes: Another Opens by Mary Beth

This post has nothing to do with cancer… but I think that this site can use an uplifting story…

I am so happy to be writing this story. My daughter was adopted at 2 days old. Her Birth Mother selected us from a resume that we compiled. We never met her. She was given two of the hospital birth photos.

 

We knew quite a few details about her family and medical history but no identifying information as the adoption was private. She was born in Pennsylvania, but the adoption took place in New York State. We were told that when my daughter was 18, she would be able to sign the adoption registry and if her birth mother also signed, the records would be opened.

Nina knew that she was adopted and we shared all of the information that we knew. All except one piece of information. When I received the paperwork I had noticed that the attorneys had forgotten to black out her Birth Mother’s last name on one of the bills. That is how I knew that part of Nina’s heritage was Irish. My feeling was that I would honor our agreement that we would not look for her and she would not look for us… until Nina was 18.  Nina always talked about wanting to meet her Birth Mother. Two questions that she always wanted answered were: Who do I look like? and Does she think about me?  Society is so accustomed to biology, people just naturally try to figure out where the resemblance is: do you look like your Mom or your Dad? Even in school, usually at the beginning of the year the kids always have to talk or write about their heritage.

Adopt means… to take as one’s own. They did take our heritage, but it does not mean that she did not wonder whose biology she was made of and what was her biological heritage.

Last year when Nina turned 18 she had wanted to fill out the paperwork and start the process. The year was quite traumatic for all because of our divorce. I told her when she was ready I would help her. My biggest concern as a Mother was to protect her. I was worried that if her Birth Mother did not want to be found it would be another source of abandonment and disappointment. Nina had decided she was prepared for that event, but that she had to try to find her. I decided I would let Nina go through the legal procedure and if for some reason the records could not be opened then I would hire a private detective to find her and make sure that she wanted to be found. I had even done a few internet searches but nothing concrete had come up.

The weekend of September 7^th was a very difficult weekend for Nina and her paternal adoptive family. She was very upset and crying most of the weekend. Mean things had been said by both sides. As a Mother, you want to make it all better, but I just did not know what else to do, except pray. I said a few extra rosaries. Sunday after mass I always light a candle at the Statue of Our Blessed Mother and ask her to watch over our family. This Sunday I asked for extra help for Nina, to relieve her pain.

When Nina came home from work, she sat down on the couch and was so exhausted from the emotions of the weekend. She was so sad. Dante was playing his video games. For some reason, I decided to pick up my phone and put her Birth Mother’s last name into my phone and the word ‘adoption’. An “adoption connect” site popped up and the 7^thentry down read:

25-Mar-2009

I am searching for my daughter who was born June 7, 1994. She was born in St. Mary’s, PA but the adoption took place in Buffalo, NY. I am her birth mother and want to find her. She has a birth mark on her forehead. I was too young to care for a child, but have never forgotten her and hope she was given the life I could not give her.

 

 

I could not believe my eyes. The only incorrect piece of information was the year. I put my phone down. I told her that we had to believe and trust that God was watching out for us. I could not tell her why I felt this way, at this moment but I would tell her when I could. I started to cry and both kids looked at me strangely. Nina asked if it was a good thing and I said “yes”. I was waiting for Dante to go to bed, so I could have some private time with Nina to share this news. She was so exhausted that she went to bed before him.

When the house was quiet, I went in to wake her up and I asked her to bear with me as I told her the whole story. I explained how I knew that she was Irish and why I did not tell her her biological last name. Then I read the post to her. She started to cry. When I first read the post my biggest concern was alleviated, “does her Birth Mother want to be found”. When Nina heard the post, one of Nina’s questions was answered, “does she think about me?”

Nina hopped out of bed and turned on her computer. She registered on the site and pressed the correspond with this person button. She wrote:

If your name is Melanie, and your Mom’s name is MaryAnn and you gave me the name Leila at birth and your birthday is October 28. I am your daughter. I have a birthmark on my right temple.

 

This message was sent at 10:30pm on a Sunday night. One guess as to who did not sleep much that night? The next day at about 11:00am, I got a call at work: “Mom… Melanie responded” that started a whirlwind trail of emails and information and 19 years of questions answered on both sides. Melanie sent a photo of herself. The biggest question of all. “Who do I look like” was answered. Nina looks just like her birth Mother with the exception of her nose.

Wednesday was going to be the first phone conversation. As I was driving home that night I thought … how do I ever thank Melanie for the gift she gave me? I started to cry, which is not the smartest idea while traveling on the freeway. When I got home, they were talking and Nina let me speak with Melanie. I told her that I do not know how to thank her and she said the same to me. We talked for quite a while and when we were done I told her that I loved her. I don’t even know her, yet I love her. It was so nice to hear the two of them talk and laugh, to hear pure pleasure in my daughter and tears of joy.

In the same day, one door shut and another opened on a whole new family. She has a Birth Mother, a Birth Father, a Step Father, a full biological Brother, 1/2 biological Brother and Sister that are twins, a birth Grandmother and a birth Great-Grandmother an Aunt and an Uncle and two Cousins. She is emailing, texting and talking with them every day. We are planning a trip to meet all of them.

Melanie said when she read the email, she was speechless. She sat stunned. Her husband came downstairs and asked her what the matter was? She said that she could not speak, she just turned the laptop towards him and let him read it for himself. She had written the post to find Nina 3 ½ years ago! Both Nina and Melanie agree that this week has been surreal and amazing at the same time. Two of the best things that I could hear Nina say were “Thank you Mom” and “They love me and they don’t even know me.”

So many prayers were answered that day…

cross-posted at marybethvolpini.com

Seven Is A Perfect Number

Jewish tradition declares the number seven is perfect. So today I share seven thoughts.

1. Seven years ago today I woke up with butterflies in my belly because of what the day held for me.

2. Seven years ago today the surgical waiting room at Baptist Hospital in Little Rock was overrun with people praying for me, laughing and telling lies exaggerated stories about me and eating my peanut M&Ms.

3. Seven years ago today I sang “I Want To Be Sedated” as the attendant and nurse wheeled me into surgery.

4. Seven years ago today a cancerous mass, my left breast and several lymph nodes were removed from my body.

5. Seven years ago today somebody stole the breast cancer awareness car magnet from my van in the hospital parking lot.

6. Seven years ago today I began an unwelcomed journey, but one in which I learned a lot along the way.

7. Seven years ago today I decided I would not be bested by something as evil as cancer.

It may not be a perfect list, but I sure do love being able to say I’ve been cancer free for seven years.

Crossposted at Jenster’s Musings