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

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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


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.


Featured Charity: METAvivor Research & Support, Inc. (by Judy)

October 25, 2011

You may be wondering what a METAvivor is. I didn’t know the word until I started writing about breast cancer grassroots organizations and ran across METAvivor. METAVivor provides a definition of the word:

A person living with a metastasis. It combines “vivor” (from “survivor”) with “meta” (from “metastasis”).

From this, I found out that I’m a METAvivor. I have to say, I like that word. Because my cancer has always been stage 4 (it metastasized to the liver) and it’s incurable, the word “survivor” didn’t seem to quite fit, but I don’t like describing myself as a “breast cancer patient” either just because I’m much more than that. And I hate the word “victim” because I am in no way a victim. I live with this disease as well as I can, and if I do say so myself, I think most of the time I live quite well with it.

But enough of that. Let’s talk about METAvivor Research & Support, Inc. This is a grassroots organization that is staffed fully by volunteers. It’s describes itself as:

a 501(c)(3) non-profit organization run entirely by volunteers, mostly with MBC. We created METAvivor because we believe the following:

•Support for MBC patients is greatly lacking
•Awareness of the disease is appalling low
•BC mets research is horrendously under-funded

and its mission is:

•We offer local support
•We help people elsewhere establish support programs
•We seek out speaking engagements, media opportunities, and other venues to make our voices heard
•We award a MBC research grant every year

METAvivor now has an initiative that is called “30% for 30% Campaign.” This campaign’s goal is to get metastatic cancer research funded at the level that metastatic breast cancer occurs.

On October 10th, METAvivor Research and Support launched its 30% for 30% Campaign in a concerted effort to improve longevity and quality of life for persons with metastatic breast cancer (MBC). The concept is simple: Since thirty percent of all breast cancer patients develop MBC — a fatal condition, then 30% of breast cancer research funds and 30% of breast cancer support activities should be dedicated to MBC. At present, only 2% of breast cancer research funds go toward MBC research and support for the disease is rare.

Of course, as a METAvivor who is greatly upset at the lack of funding for metastatic breast cancer, I fully support this effort. I hope you will too, and will consider donating money to METAvivor . . . instead of buying more pink stuff.

I’m just sayin’.

Good work, METAvivor!
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Cross-posted to Just Enjoy Him.


Featured Charity: Living Beyond Breast Cancer (by Judy)

October 24, 2011

Living Beyond Breast Cancer (LBBC):

empowers all women affected by breast cancer to live as long as possible with the best quality of life.

LBBC hosts seminars and conferences for women with breast cancer. In addition, it has an extensive website with subjects covered such as: Understanding Breast Cancer; Learning From Others; Events; Get Involved; and, About LBBC. There is also information about those who are newly diagnosed, those with metastatic breast cancer, African Americans with breast cancer, and Latinas with breast cancer.

Living Beyond Breast Cancer offers programs and services to women affected by breast cancer, caregivers and healthcare providers including a website, lbbc.org; a toll-free Survivors’ Helpline staffed by trained volunteers at (888) 753-LBBC (5222); national 84 cents of every dollar donated is used for programs and support servicesteleconferences; community programs; newsletters and publications; recordings and transcripts; small grants to help improve quality of life; and workshops and trainings for healthcare professionals

One thing I like about LBBC is that they tell you upfront that:

84 cents of every dollar donated is used for programs and services.

Please consider donating even a small amount to LBBC to help those of us trying to Live Beyond Breast Cancer.
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Cross-posted to Just Enjoy Him.


Hmm…. a rambling update of sorts (by Lyn)

August 20, 2011

I just want to first comment on the recent posts from these lovely ladies.  I can relate on so many levels to it all though I am in a different phase currently.  There was a time when I was first diagnosed with IBC that I wanted to talk about death, all I could think about was life in a spiritual fashion because I didn’t know if I would beat it.  My mother had just passed away a year before from cancer and I watched the last breath leave her body, so the heavy thoughts of the seriousness of IBC weighed heavily on my heart.  Then I remembered HOPE, and my fighting spirit kicked in and I focused on beating it.  Not necessarily on living a well rounded life at the time, I was too scared for that I think, but I did have hope and I did feel like a warrior.  A lone warrior LOL.  My life quickly changed from average life working full-time with a 2 year old and 3 year old happily married to unemployed, very sick, and noone around me understood.  The people that were supposed to ‘get it’ turned into confused weak aliens and my new support system was a world of women online that I had no idea even existed and most of whom I still haven’t met in person.

I actually had to shut out family members who weren’t positive.  I simply said, if you can’t support me as much as some stranger I’ve never met, don’t talk to me at all.  Fear is a powerful thing, and when I’m scared I am sort of like a feral cat backed into a corner and if you’re not a friend you were an enemy.  Right?  No.  Necessary?  Possibly.  There’s a lot that I look back on and regret from the first year of my cancer diagnosis, but I have to be very gentle with myself because my support system wasn’t good.  We had no guideline or role model to show us what to do, how to help each other.  The growth I’ve experienced is that it isn’t their fault.  It wasn’t their fault.  The desire to support me was there, but it wasn’t coming in the way that I wanted or needed so I couldn’t see it.  Now that time has passed I have since found understanding and reconnected with said family members who were more than happy to come help me at my recent surgery.  I vowed this time, to recognize the intent behind people’s actions and go off of that.  I’ve learned to have understanding for others looking in at me from the outside.  I probably scare the shit out of them.  A 30 year old with 2 small kids going through everything we warriors do, and doing it independently and fiercely.  Yes, I’m sure looking back they saw me as pushing them away and their own fear stopped them from meeting me where I was, and my own desire for survival on my terms stopped me from including them in my battle.

Needless to say I have learned a lot about myself and about others since my diagnosis.  Life, the meaning of life, the ‘right’ way of life is something I think about all the time.  I have yet to find a place where I am comfortable just being.  It seems like I keep pushing through pain to find the space where there is no more pain and it won’t come.  Sometimes I ask myself why me, why now, why not.  Lately I’ve been looking to the future a lot, praying a lot, begging the universe for some release.  Then I remember that I have the power to focus on hope, healing, and happiness.

I’m not talking about my cancer with the last paragraph.  I haven’t said as much on my blog, but I found out that my husband- who I truly love with all my heart well before cancer- was cheating on me when I was battling for my life.  I found out this year, and it’s been like getting a cancer diagnosis all over again.  Actually I would prefer chemo some days.  So while at first I shut him out, I’ve been allowing him to talk to me and to listen and then I talk.  It just feels like pain.  Healing, sure.  Cleansing, sure.  But pain, more unnecessary pain that I don’t think I deserve and that makes me angry, which makes me frustrated, which makes me sad because I can’t control it.  More and more I learn about myself and at the same time about others’ limitations.  He has stepped up to the plate at taking my punishiment and wrath and making it right but will it ever be enough?  I don’t know.  I can’t say, I can’t control how I feel.  I would give anything to be nonchalant and flippant and not care.  I would trade anything for that.  But I’m stuck here in the pit of I give a shit and also, responsible for what happens next.  Do I want to risk getting IBC again and not have him in my life- this man who I love and is remorseful- or is it – do I want to risk getting IBC again and be still married to a man who betrayed me when I needed him the most.  Or is it, do I take yet another leap of faith and trust (but verify!) that this person has grown himself, found his own love, and will never hurt me again and jump in with the hope that IBC will not come knocking on my door again but if it does my marriage will not be an issue of it.

I don’t know.  It’s too much, it’s overwhelming.  The gift and the curse of cancer is that we know how precious life is.  How much time can I waste on anger or hurt- even when it hurts so much all the time?  That becomes the question.  I imagine that if I was a normal 32 year old without cancer or parents gone, and everything was fine I would walk away with my head high and my hair flapping in the wind giving him the middle finger for not seeing how awesome I am, not caring what he might have been going through or what led to it.  But now… now I know unfortunately that life is bigger than me.  It’s not all about me, even when it should be.  Ah well… that’s my rant.

Physical update, I had a double latissimus breast reconstruction 4 weeks ago.  Last weekend I ended up with a bacterial infection and almost got admitted again.  Every day this week I have had to go into the plastic surgeon’s to have my back drain tube wound opened and drained and packed because it was fluid that collected there that caused it.

My left cancer side ‘frankenboob’ is not doing well.  It’s failing and the surgeon says we have to do another surgery in a few weeks when I’m better this time taking fat and skin from my stomach.  Hopefully it goes better this round.

I am NED still according to the pathology reports from the samples the surgeon sent when he did the reconstruction.  So I have that to be thankful for, and I am.  It is possibly one of the main things that keeps all the pain balanced, the physical pain and the emotional pain… that no matter what I’m still for now NED and still have a chance to see my kids grow up.  Anyone else sometimes feel like, is this really my life?  I know I do, but thanks to cancer, I’m thankful for most of it and the parts I don’t like I have hope I’ll figure that out in time.


please honour my friend by having some fun (by Laurie)

July 23, 2011

My friend Rebecca died this week. She was all of 37 years old (if I’ve done the math right) and she had metastatic breast cancer. She was also one of the funniest people in my online community. She was also generous, straigtforward and honest. My heart goes out to her friends and family – the people she loved, wrote about and who knew her best.

Rebecca left strict instructions that we were to shed no tears after her passing (I’m afraid I’ve let her down on that front but I’ve been doing my best) and that, instead of a funeral she wanted a celebration of her life. I’d love to join the party and to hear the stories that those closest to her would be bound to share. Because Rebecca took her fun seriously.

I won’t be able to attend the celebration (Rebecca lived in Cape Cod) but I would like to do something. And I need your help.

1. In the next week or so, please go out and do something fun. Do anything at all, as long as it makes you happy. If you need inspiration, Rebecca loved dogs (especially her pit bull, Diezel), cooking, eating out (her restaurant reviews were among my favourite blog posts), her scooter, her little car, road trips, NASCAR, kick boxing, books, funny movies and music. If none of these things appeal to you, please go out and do your own thing. If you like, bring someone with you to join in the fun.

2. Let me know. You can leave me a comment on this blog, at Not Just About Cancer or send me an email (laurie dot kingston at gmail dot com) or message me on Twitter (I’m @lauriek). Just a few words to let me know what fun thing you did in Rebecca’s memory. I’ll compile a list and make sure that it gets to her family.

That’s it. It already makes me feel happier, thinking that there will be a little more joy in the world this week. I think Rebecca would approve.