Seven Years by Mary Beth

April 29, 2013

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

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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.

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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.

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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.

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

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

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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


The Next Chapter

February 7, 2013
Crossposted at Jenster's Musings

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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

September 21, 2012
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 7th 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 7thentry 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

for Orit (by Laurie)

July 14, 2012

photo: Andrea Ross/Mark Blevis

As of Saturday, June 30th, I have been in remission for five years. This is a huge milestone and I’m very fortunate to have the chance to mark it.


But I really didn’t feel like celebrating.


Just a couple of days before, my beautiful friend Orit passed away, leaving three young kids, a loving spouse and a large group of family and friends in deep mourning. I spoke to her husband Sean early on the day she died and afterwards posted on Facebook what was for me an unusually vague status update:

“Warning: This would not be a good day to tell me that everything happens for a reason. Sometimes wrong stuff just happens. And sometimes life is terribly unfair.”



So much about cancer is a crap shoot. Some get cancer, some don’t. Some walk away, others live with the illness forever. Some live for a long time and some die way before they are ready to go.


Orit had strength and determination and a great love for her family and community. She had access to the best health care and, prior to being diagnosed with Stage 4 breast cancer, was healthy and fit. She never stopped fighting to live and she most definitely did not lose a battle.


Despite the fact that we lived in the same neighbourhood, I met Orit less than a year ago, not long after her cancer diagnosis. Our illness brought us together but we soon found that we had so much more than than cancer in common. We both found humour in the world around us, sought to nurture our creative selves and wore our hearts on our sleeves when it came to those around us. I had the privilege of watching her face light up when her husband got home and the clear eyed love she had for each of her kids. We had the chance to talk about being in cross-cultural relationships and about the values we hoped to share with our kids. We talked about petty grievances and big ideas. And we shared our fears, hopes, sorrow and anger at facing the scourge that is cancer.


One evening, as we were yarn bombing our local community centre, Orit and I sat on the pavement sewing a 6 foot tube of yarn onto a bike rack. As we took turns holding the piece in place and passing the needle, she suddenly said. “I really wish that we had the chance to know each other before. We would have been such good friends.”


I felt my heart break as I struggled to find an appropriate and truthful answer. But I knew it would be wrong to say “We will get to be friends for a long time” or even “It’s going to be OK.” Instead, I said swallowing the lump in my throat, “I agree. I wish I’d met you sooner as well.”


The last time I saw Orit, we had tea on her front porch while she knit. She had been in the hospital the night before because of unmanageable pain. That morning she seemed fine, if weak. She talked about convincing her oncologist to try one last course of treatment and her profound grief at the thought of leaving her children. We both cried.


And then I left for a yoga class, borrowing a t-shirt before I left. It didn’t occur to me that I would not see her again.


A few days later, she was hospitalized. And a few days after that, she died.


I wish I had told her how amazing I thought she was. That I thought she was a great mother, an interesting person and inspiring in a way that transcended her illness. I wish I’d said how beautiful she was.


I’ve struggled for two weeks to write this blog post. Orit’s family have been so kind, loving and generous to me but I can’t help thinking how grossly unfairly life has treated them.


Which is why I haven’t felt like celebrating.


I am very lucky to be alive and I hope to be around writing blog posts in another 5 years. None of us knows when our time will come. We need to live bravely, love fiercely and hold on to the things that matter. We need to tell those we care for how much they mean to us and to do those things we always wanted to do. No matter how long we have on this earth, we need to truly live.


I, for one, plan on doing a little more yarn bombing. I have Orit’s last piece of knitting so a little bit of her will be there as well.


Care to join us?

video: Mark Blevis


One, Two, Three, Four, Five, Six…by Mary Beth

April 29, 2012

Those words still ring in my ears… albeit fainter as the years go by… “You have Breast Cancer.” Life forever changed from the day of diagnosis. Today I add another tally mark, another year of survivorship, another year of losing more friends to this disease, another year of remembering and implementing  the lessons that I have learned from cancer, another year of hoping and praying that it does not come back, another year of making memories, but most important … another year of life!

cross-posted at marybethvolpini


Sh*t Girls Say to Girls with Breast Cancer

March 2, 2012

Divorce vs. Cancer, by Mary Beth

January 20, 2012

I have not blogged on this site in quite some time. I just had my 5 year and 6 month check-up and I am good, a few minor problems but let me emphasize minor. The past year has been a very difficult and trying one. After 28 years of marriage I found the courage to ask for a divorce.

I have always been afraid of divorce. I am not sure if it was because I was so young when we met. If I was afraid of being alone… which is a funny concept because I have felt alone for much of my marriage. I was afraid of what others would think. I was afraid of the kid sharing. I was afraid that once I asked for a divorce he would not support us. I was worried about money, which is also a funny concept because I was worried about money with him too….probably more so. I was afraid because he was my first love. I was afraid to have to try to meet someone else to spend my life with and now even more so as a cancer survivor, with a double mastectomy. I was afraid because I love the idea of marriage and family and I desperately wanted to have a long-term marriage and a good family life for my kids.

We had talked about divorce many times and in fact were very close in 2006 and then the cancer diagnosis. We stayed together, but in hindsight I think that was the final nail in the marriage coffin… thank goodness in was not the final nail in my coffin. I learned so many lessons from my cancer, mostly what is truly important. It changed me in so many ways. I guess I thought it would change the others close to me too. I have learned that just because we learn lessons, it does not mean everyone else does. So many times after the cancer I felt like the glorified nanny and housekeeper. There were many issues that I could not talk about then, that I hope someday I can share in case other women experience the same with their marriages.

Over the past 5 years since my diagnosis, those that knew of my marital problems would say “you survived cancer, you can survive divorce”. I heard what they were saying, but I just could not find that courage. I felt cancer was different. I had a team of doctors that I trusted. They said “do this” and I knew I would do it and follow their directions to the letter. There is no trust in divorce… another funny thought because there was no trust in my marriage either. I was not blessed with being able to trust those who are supposed to love and protect you.

I was so afraid of asking for a divorce and then having my cancer come back, what would I do? I don’t know if my cancer will come back, but I know if I stayed it definitely would. I found the courage. Divorce is hard, but cancer is harder.

On the tough divorce issue days I think of the other Mothers on this site who are fighting their cancer daily, hourly and by the minute. I think of the women that we have lost and their valiant fight, they remind me everyday what is truly important and then I remind myself… “if I survived cancer… then I can survive divorce.”

Please say a prayer or lots of prayers and healing thoughts for one of our fearless and amazing leaders, Susan, she has been having some breathing and pain issues and was admitted to the ER on Tuesday.