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


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


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.


Stream of Consciousness (by Judy)

November 4, 2011

I was just looking at my notes from the Metastatic Breast Cancer Network (MBCN) Conference that I attended last weekend in Baltimore, MD. I was hoping to find something that would lend itself to a coherent, theme-specific post, but instead I find little bits of information, some of them like golden nuggets that I can stash away until MBCN has the conference and power point slides online in about a month.

I wil share some of these nuggets, though, these little bits of information that, for whatever reason, struck me at the time as important enough to write down.

So here goes a disjointed, fragmented post . . . even though it’s all about metastatic breast cancer (MBC). That’s the thread that holds it all together.

One of the speakers talked a little bit about how the Network first was formed because two women, both with MBC, felt isolated and alone in support groups of people with early stage breast cancer. Things like going pink all of October or celebrating the end of treatment “is not possible with metastatic disease.” I know what she means, what the founders meant. I chave totally different conversations with those with early stage breast cancer (BC) than I have with those who have MBC. The ones with MBC seem to intuitively know what I’m going through, what I’m feeling and even thinking. They understand the very real fear of dying, of leaving this earth before I’m ready. They understand the worry I have for my child, my husband, my little family. They know that talking about death doesn’t mean that I’m obsessed with death or that I think I’m going to die soon. They understand that it’s a deep need to understand what will eventually happen to me with this metastatic disease. They understand all of these things because they live with these things themselves.

Approximately 30% of people diagnosed with early stage breast cancer will at some time develop metastatic breast cancer, cancer that has spread to organs other than the breast. Breast cancer, if confined to the breast, doesn’t kill. MBC, however, kills. And there’s very little research done on MBC.

One of the reasons that we also may become, in Whymommy’s words, cancer rebels and pink protesters, is that we can’t be happy and pink during October. We can’t join the throngs of “survivors” if we’re not going to survive this disease. We know we’re different, that we’re what they fear the most. How can we join in when we’re the black sheep of the breast cancer movement, the bad girls of breast cancer?

We can’t. We stand out. People get quiet when we tell them that we have MBC. They don’t, understandably, know what to say, although I think an “I’m sorry” or “I’m sorry to hear that” is always something you can say to people who are struggling not just with breast cancer but with so many other things that happen to people.

We are the 30%. I am part of the 10%, the percentage that was diagnosed with Stage 4 disease from the outset. I guess that makes me one of the REALLY bad girls of breast cancer. And it makes me unpopular with some people, with people who only want to see the happy stuff, with people who are uncomfortable with my diagnosis, with people who just can’t face the fact that I won’t be around someday, that barring a miracle or sudden death from something else, this cancer will take me in a horrible way.

Trust me, it’s not something I like to think about, but I have to. I have to try to prepare my loved ones that someday I won’t be here, I may be in hospice care, they may watch me die. Believe me, I don’t like that image any more than anyone else does, but the difference is that I can’t pretend that it doesn’t exist, I can’t say, “Oh, you’ll beat it,” because MBC is an equal opportunity killer — it takes fighters, optimists, supplement-takers, vegetarians, the religious, etc., just as much as it takes everyone else.

I will die from this. My husband, bless his heart, still says, “I hope not,” even when I try to talk to him about things that are important to me, that I think he’ll need to know about if it gets to the place where he’ll have to raise our son by himself.

*sigh* It’s a hard life. Even so, I love my life and I have an amazing God and I hope and pray for treatments to extend my life for a very long time.

That, and a good medical team, keep me alive for now . . . .
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Cross-posted to Just Enjoy Him.


please be aware (by Laurie)

October 13, 2011

Today is Metastatic Breast Cancer Awareness Day.
Six years ago, I thought I had a pretty good vocabulary but I didn’t know the meaning of “metastatic” until I was diagnosed with breast cancer.
According to the American Cancer Society, only 15 per cent of women with mets will still be alive 5 years after their diagnosis. I’m one of the lucky ones ( stats are bogus anyway).
I think one of the reasons I get so angry at campaigns aimed at “saving [insert infantile name for ‘breasts’ here]” is that, for those of us with metastatic breast cancer, the breast was only the beginning. Our cancer has spread to our bones, brains, liver, lungs or skin. We are “the bad girls of breast cancer.”
And we want you to know about us.
We are:
Catriona
Rachel
Katie
Jeanne
Deanna
Judy
Susan
Katherine
Eileen
Delaney
Kristina
Dirty Pink Underbelly
Susannah
And we remember:
Sarah
Emily
Rebecca
RivkA
Sue
Andrea
Kate
Chris
Daria
Lisa
Jill

Renee


just slightly below par (by laurie)

September 15, 2011

On the morning of September 7, I had an appointment with my oncologist. I had confirmed that we would do it over the phone and kept my phone handy to await is his call.

 At 11:00, the nurse who works with Dr. G. called to say that I would be hearing him before the end of the afternoon, thus giving me several hours to work myself into a state of high anxiety. I’d had an echocardiogram and two CT scans on August 29 and I knew that my doc would have the results.

I had no reason (other than history) to believe that the CTs would reveal anything bad and I’d managed to pretty much forget about the results until the day I was to receive them. On that day, I became a nervous wreck. I jumped every time the phone rang and when the call I’d been waiting for finally came through at around 5pm, I was a mess.

My oncologist apologized for the delay, and, as always when I hear his voice, my annoyance and anxiety dissolved. He told me that both CTs were fine. I have lots of scarring on my liver (from the cancer) and a little scaring on my lungs (from the radiation) but that there was no sign of cancer anywhere.

Excellent news.

Then I asked about the echo, which surprised Dr. G. He didn’t have the results in front of him and had to go look them up. When he did, he sounded a bit taken aback.

My ejection fraction is at 48%. The normal range starts at 55%, so I’m really just below that but it’s enough of a concern to send me to a cardiologist and to cancel next week’s treatment.

My concern is not that there is permanent heart damage (although it’s a bit freaky to think that my poor heart is a bit over-stressed) because Herceptin damage is usually reversible. My fear is the length of time it will take my heart to bounce back and what my treatment options are in the interim. And what if the toxicity has built up to a sufficient level that long term treatment with Herceptin is no longer viable?

This drug has been my magic potion, the one I credit with my remission and the fact that I’m here today. I’m not ready to think about giving it up.

And I don’t have to. Not yet. Going to try and save all my questions for the cardiologist and, in the interim, carry on with my happy, busy life.

Update:  I have an appointment with a cardio-oncologist on October 3rd.

Cross posted from Not Just About Cancer.