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

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


Family commitments

April 20, 2012

Cross posted from ‘Get out Gertrude’ by Jenny (jaydub26)

YD although she is an adult is diagnosed with a partial chromosome deletion which has led to both intellectual and physical delays so she operates at about a 5-8 year old level for most things

Easter was also YD’s 23 rd birthday so we had her home for 3 days/ 2 nights. On the Saturday we  shopped for new clothes (birthday present from us as it was the only thing she really needed) then went out to dinner at a mongolian BBQ restaurant where you pick and mix your meat, veges and sauces and then it gets cooked for you – YD loves the pick and mix part of it.

On Sunday OD took YD to church while I prepared clues for the Easter Egg hunt – family tradition for YD

one of the 17 clues…

Seeing Sunday was also YDs actual birthday – MD cooked her special pizzas for lunch and she opened her presents then OD, YD, C (our ‘French daughter’ ) and I went to the movies for the afternoon.

During Easter weekend OD also moved house she now lives in a nearby town approximately 20 km instead of in the same town as us.  So on the Monday YD and I went to see OD and R’s new house and explore the town,  which is the town I grew up in from the ages of 10-18, it has changed a lot. By the time YD went home on Monday night I was fairly worn out and spent the rest of the time before chemo on Thursday recuperating.

Last weekend was OD’s bridal shower (and hen’s night but I didnt attend that) – 5 weeks now to the wedding.  I have not been a very active ‘Mother of the Bride’ but was glad I was feeling well enough to enjoy this.

I have also been helping C with her uni assignments.  As English is her second language she sometimes needs help understanding what an assignment requires of her. and as a student of the University of Auckland myself I have been able to explain what they want and explain things like APA referencing and things like that which is not something she has had to use in getting her degree in France.  I also read over her assignments and make sure they are reading smoothly.  She writes well but sometime french syntax creeps in or she writes something that while technically correct is not the way we would write it in English so I just help her with that sort of thing.

My identity since my daughters were born and especially with being a ‘stay at home’ mum for so long , albeit with being very active in volunteer work, has been first and foremost ‘a mum’ and it has been something that I have stuggled with since diagnosis.  Even though the girls are grown there are times they have needed me and I have to weigh up how much I can do while still looking after myself through treatment.  I have had to work through feelings of guilt that I am not doing enough for any of them and knowing that I, or my condition, is  the cause of a lot of the stress in their lives pains me greatly but there is nothing I can do other than try and be the best mum I can be under the circumstances.

At the beginning of April I went to a creative writing workshop run by the hospice in conjunction with the ‘Whats on your plate’ exhibition being held at the Papakura Art gallery.  This was both a visual arts exhibition and an interactive written word exhibition with creative writing workshops being held with various community groups and pieces from each workshop being displayed as part of the exhibition.

This was the poem I wrote as part of the workshop and I have permission to put it on my blog

On my plate

The mixed vegetables of my children’s needs

Stir-fried together but each with their unique flavour

Adding to the mix

They need different seasonings

And none can overpower the other

How to spend the right amount of time cooking

So they will all come out crispy and delicious

Not limp and overdone

 

And how do they sit on the plate

Alongside the staple rice of my relationship with their father

The stew of my cancer treatment

And the garnish of my university studies

 

The different tastes and textures

Fit on my plate

My life is delicious

©Jenny Williams 2012

‘What on my plate’ creative writing workshop with Totara Hospice South Auckland in conjunction with ‘Whats on my plate’ Exhibition on at Papakura Art Gallery


Little Pink Houses of Hope Video (by Judy)

October 31, 2011

This? Made me cry. I miss my Little Pink family SO MUCH.

Please watch and consider donating. It’s a wonderful organization.
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Cross-posted to Just Enjoy Him.


Featured Charity: Little Pink Houses of Hope (by Judy)

October 12, 2011

Little Pink Houses of Hope is a charity near and dear to my heart as my family and I were recipients of one of their beach retreats for breast cancer survivors and their families.

Their mission is:

To promote breast cancer recovery by offering opportunities for survivors to reconnect and celebrate life.

LPHOH, or “Little Pink,” as some of us in the Little Pink family call it, is solely a volunteer organization. The founder, program director, and volunteers for each of the retreat week are unpaid. Little Pink receives donations of: houses and condos that families use for a week; meals; beach toys; photo shoots; and numerous and sundry other things for each of their retreat weeks. Little Pink was a week where we, as a family, could spend some time with the other families and bond, make friends, and have our kids (those of us with kids) be among other kids Like Them, kids whose moms have breast cancer. This last part was huge for me, as Energy Boy has made some very dear friends who completely understand the experience of having a mom with breast cancer. Although he hasn’t articulated it, I believe it’s helped him feel less alone in his situation. I thank Little Pink so very much for this.

Little Pink succinctly states what they do:

We provide week long beach retreats in the Carolinas for breast cancer patients & their families. We believe a cancer diagnosis does not just affect the patient, but the entire family. Every beach retreat is designed to help families

Live Stronger. Laugh Harder. Love Deeper.

We did, indeed, Live Stronger, Laugh Harder, and Love Deeper during our Little Pink beach retreat week. We made friends who are going through the same thing we are. We had time to share as a family.

We love Little Pink, and I think other people going through breast cancer would love it as much as I do if they could experience what Little Pink has to offer. This is definitely a charity I fully support.

Little Pink Houses of Hope was a dream made into a reality by its founder, Jeanine Patten-Coble. Thank you, Jeanine, for giving so much of yourself to breast cancer patients/survivors. We all love you and what you do.
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Cross-posted to Just Enjoy Him.