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


Same Chapter…

February 16, 2013

The 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

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.


Neutropenia and motherhood

February 23, 2011

Neutropenia is a common but yucky side effect that affects about half of cancer patients on chemotherapy or treatment with a biological agent (like Nexavar).  When a cancer patient is neutropenic, it means that her white blood cell count is low and she is much more suceptible to infection.  She is given direction to avoid possible sources of infection, to stay away from crowds, to wash hands and insist that others wash hands before coming into contact with her, and to change her diet to avoid the risk of infection from food. 

All foods must be freshly cooked.  None can come from restaurants or uncontrolled sources.  Bread must be bagged and not homemade.  Cutting boards must be changed between preparation of meats and other foods.  No deli meat.  No deli cheese.  No hand-packed or soft ice cream or froyo.  No soft cheese.  No popcorn.  Nothing from a bakery.  No raw veggies, fresh fruits, except those with a very thick skin (oranges and bananas), or dried fruits.  No spices, salad bars, buffets, or restaurants.

I’m pretty sure the guidelines would say no contact with little children who bring home infections from preschool, but what can I do?  I have two who need me, and one is home sick today.

Originally posted at Toddler Planet, February 22, 2011


The kids

February 23, 2011

I worry about my kids.  I worry a LOT about my kids.  How are they making it through this crazy time?  How do they deal with hearing my name listed among the sick that we pray for at church every Sunday?  How do they feel when they hear me say, “No, honey, Mama can’t” wrestle or swordfight or take them for a walk? 

Are they ok?

Are they going to be ok when they’re teenagers, or all grown up?  Will this time be a defining moment for them, something to point to in future therapy sessions?  Will they be ok?

But yesterday, my oldest brought home a drawing from school that made my heart sing.  They drew pictures of snow globes, and, out of anything in the world, he chose to draw himself playing with two friends.  He drew friends.

He didn’t draw the dark scary place that I was in.  He drew the happy, kid place that he was in.

And he’s going to be ok.

Today, he came home with simple homework:  write three words that describe who you are.  We waited to hear what words he’d choose, and, after his bath tonight, he told us:

Happy.  Nice.  and then he asked his Dad what word he’d use to describe him, curious what he would say.  Dad said, “curious.”  Widget smiled, and there the words were, all out in the open.  WhyMommy’s oldest boy had fulfilled her deepest hopes, all at the age of 6.  He is happy.  He is nice to others and his friends.  And he does ask “Why, Mommy?” just like I dreamed, well before he could talk.  They’re still the sweetest words, next to the last ones I hear every night, as I turn off his light and kiss his forehead as he goes to sleep:

“I love you too, Mommy.”

Originally posted at Toddler Planet, February 9, 2011


Saying a novena

February 23, 2011

My friends/church are saying a novena for my healing, starting tonight.  Being a new Catholic, I’m only starting to learn about formal prayers like this, but I welcome it.  Colleen will lead us through what to say and what it means over here (or you can download the printable version).  All are welcome. 

It is true, I have prayed for healing before, and so many prayers have been said on my behalf.  I know it gives me strength and hope.  I have faith that if it is God’s will, I will be healed.

When we arrived home from the grocery store this afternoon (stocking up on milk and bread before this evening’s storm), there was a hang-tag on the door that said that flowers had been left at the neighbor’s for me.  Surprised, I checked on a family down the street, as they shoveled their driveway with children in tow, and then walked across to her house.  She met me on the snow-covered lawn, holding these daisies in her hands and saying, “They’re beautiful.”

Well, of course they were, and of course we lingered to chat.  We’re two who could easily be good friends, if not for all the things that separate us, not least the six children, mine all boys and hers all girls, that span the ages from newborn to nine.  And yet we hardly ever see each other, and our houses keep each other company while we remain almost-strangers.

Today we lingered, and when she asked, “How are you?” it just all spilled out, how we had gone to get a scan to see the good news that the cancer was gone, but it was back instead, and how I was in a clinical trial and hopeful and positive but still I’d really rather not be here again.  I stopped and looked at her, embarrassed that I had let all that out, for I don’t really talk about it out loud, and she looked at me and said, “My mother has cancer.”  Her mother was just diagnosed with stage 1, a thousand miles away, and she’s suffering through radiation, harder at her age, I’m sure, and pretty discouraged about it to boot.  We stayed and talked, and I don’t think I said anything too special as I answered her questions about radiation, about fatigue, about how to help her mother as she goes through treatment, but at the end, I hugged her, and she clasped my arm and said, “I think the flowers were meant to be.”

As I walked back home, I marveled at how the flowers had indeed already brought me a moment of cheer and friendship, and I hadn’t yet looked at the card.  But when I looked at the card, I was blown away:

Dear Susan, We see the miracle in the beautiful daisies, so how can we not believe that there is a miracle left for you.  We will keep praying as you keep fighting. Love –

And there it is.  Do I believe in miracles?  You bet.  Always have.  Is that incompatible with being a woman of science?  I don’t think so.  And neither did many great men and women through the ages.  I don’t know how it all works together, I’ll admit, but I know enough to know that just because I don’t understand doesn’t mean that it isn’t true. 

At school pickup today, a new friend pressed something into my hands, a relic, she said, and told me to take it, along with her prayers, she said.  “I am praying for you,” she said, and she knows that God hears our prayers.

After three days break from the treatment, ordered by my doctor because I lost sensation in my fingertips and thumbs on Thursday, I’ve started taking the medicines again.  That’s progress.  That’s something.  And the arms I’ve clasped today, the friends I’ve shared a smile and a No Princess Alone buttonhope with, the faith that has been spoken to me today by Catholic and Orthodox Jew, and the very fact that I’m here having a quiet moment with you — well, today has been a very good day.

And as for the princess?  Well, she keeps popping up on blogs, and she and I spent the early part of the afternoon with Little Bear, building a replica of our house.

Originally posted at Toddler Planet, January 31, 2011


Finding the new normal

February 23, 2011

If I were to detail yesterday’s events for you, as I try to when they are relevant to this cancer experience, I would simply break down and cry again, and that would be useful to almost no one.  Let me just say that I met with a lawyer, drew up the outline and contents of my will, asked him to stop joking and saying “if you die tomorrow,” named guardians for my children, considered who to give the power of attorney over my medical and financial affairs, and who could make the decision to withdraw life support, sipped a cup of hot and steamy tea that shook in my hand a little as I played the grown-up to a seasoned professional, and then spent the afternoon cuddled up in the big bed with my littlest one and PBS Kids, calming down and gathering my senses about me again until it was time for my oldest to come home from school.  (He stood in the sunlight streaming in the window by my bed, and I cannot believe it, but when I looked at his feet, I saw that he was standing in rainbows, broken by the glass.)

After a wonderful and distracting evening event at school, I developed a splitting headache, sensitivity to light, nausea, and dizziness from it all and had to lie down alone in a dark room, listening to my husband read the bedtime stories and wishing it were me.  I worried that these were the dreaded side effects and that I couldn’t continue in the trial — and of course that made it worse. 

But there were two redeeming moments to the day that I must take a moment to share with you.  The first was as I was getting Little Bear all snuggled up with me in the big bed, blankets pulled up around us and a freshly popped bowl of popcorn at our sides.  Sherlock Holmes was on the screen, and my baby sighed and said, “Us really lucky, Mommy.”  Well, yes, baby, we are.

And this afternoon, my oldest was in my office (when he shouldn’t have been), and he asked me about the lego figure I keep at my computer, the Princess-Who-Can-Defend-Herself, complete with eyeglasses and sword, and he smiled with recognition as he responded, “I know!  She’s you!  She’s inside you, fighting the cancer!”

And so she is.

And so I will simply say that the rest of the day was a day horriblis and leave it at that, and leave you with the image of a very tiny and very strong lego girl inside me, fighting the cancer with her minature sword, side-by-side with the new medicines that at once starve the cancer cells of estrogen and deprive them of their ability to grow and divide.  She is fighting, and I will fight, and my little ones will not crumble, but cheer me on in this new trial.  No, we will never be back to normal.  But we are finding our way to the path of the new normal, and we will do it together.

Originally posted at Toddler Planet, January 22, 2011