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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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.


Healing so far so good (by Lyn)

November 22, 2011

I know I am not much of a blogger these days.  I even took my personal blog down while I work on a different one, but I am not finding the desire to work on it.  I kind of put myself out there to the world, cancer and personal warts and all, and am going through a phase of privacy.  I still want to share and support others, but I find that I have this deep need to be ‘normal’ for a short while.  I’ve been focusing on things like playdates and moms nights out, and going back to school for a different degree, etc.  I felt guilty for not keeping up with my cancer pals like I should, and then I remembered that no matter what, I will always belong to this community.  If we all lived in the same neighborhood, I guess my role would just change from a weekly meeting to dropping off food a couple times a month.

For an update, I’m 2.5 years out from my IBC diagnosis.  I had a double latissimus breast reconstruction in July and I had my last expansion last Monday.  The next step is healing and letting the radiated skin continue to change and heal, then we will do a fat injection.  Though I’m not a fan of surgery by now, I’m kind of looking forward to the removal of fat from my stomach and putting it in my boob.  Then it will be another 6 months after that I hear, when we will attempt the implant exchange.  I’m fine with taking the time to make sure it’s done as best as it can be.  I can see the visual changes in the tissue on my left side change weekly, and hopefully by the time the implants are in it will be supple enough to pass for a breast.  The good news is that I’m no longer calling it a ‘frankenboob’ which my plastic surgeon appreciates.  I’m taking pictures along the way and will publish a photo show at the end of it all.

My oncologist left the practice a while ago, and I finally met with a new one last week.  We’ll see how it goes, I know I don’t have to explain to you all how it is meeting a new doctor unfamiliar with you much less wondering if they are familiar with your disease.  Other than that, I’m good.  I find myself relieved the older my children get, my 6 year old son is in first grade and my daughter will be 5 on Valentines day.  Now that there is a small hope they will remember me if I die tomorrow, I relax a little.  Anyone play bunco?  I played that for the first time last month and it was fun!  See, that’s the type of thinking my brain goes to these days, I think I am serioused out.  the death of my mom from cancer followed by my own diagnosis a year later at age 30 followed by my marriage falling apart, I think I’m done.  I want to spout something wise, but I end up thinking ‘hey let’s make cookies and watch a good movie’ instead lol.  It’s a phase I know, but as someone who’s gone through a LOT of phases, I can’t say it’s any better or worse than a cancer focused one, it’s just different.  I wish you all lived closer so we could have a huge cancer warriors only bunco night complete with cookie exchange!  Then I could combine it all and feel somewhat normal again:)


it is what it is (and what it is is ok) – by Laurie

November 16, 2011
Herceptin makes me feel lousy. Or maybe it’s the Demerol they give me from flopping around like a fish with a fever. Either way, after every treatment I feel achy and hungover for a couple of days.
It’s a not nearly as bad as when I also have chemo (and I bounce back more quickly) but I’m still really dragging my butt around, when I bother to get up at all. I’ll go for a walk later but it will take every ounce of the meager willpower I possess to get myself dressed and out the door.
I saw the cardio-oncologist again on Monday and that appointment went as well as could possibly be imagined. My heart was slightly damaged by the Adriamycin but has remained just below normal, since being on the Herceptin. The verdict: I can continue with Herceptin. I don’t need to have heart scans every three months, as I have been. I don’t even need to be followed by a cardio-oncologist unless my ejection fraction dips below 45 (it’s currently around 49) or I experience symptoms of heart failure (um, yeah).

It appears that this whole heart scare was a tempest in a teapot – a reminder that when it comes to treatment of women living with metastasis, doctors are just making stuff up as they go along. They really don’t know the long term effects of the drugs that keep us alive because our being alive and in remission is still so unusual. It’s a bit unnerving but, given the alternative, I’m happy to serve as a human guinea pig.

Cross-posted from Not Just About Cancer.


For Those Living with Metastatic Breast Cancer (by Judy)

November 2, 2011

Researchers are surveying people living with metastatic breast cancer about how they make treatment decisions. If this applies to you, please consider taking the survey. Their deadline for the survey is November 11. Thanks so much.

SURVEY
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Cross-posted to Just Enjoy Him.


Cancer Doesn’t Come to the Party Alone (by Judy)

October 21, 2011

A Facebook friend of mine who has lupus once told me

Lupus doesn’t come to the party alone

and went on to list other ailments she has had since she was diagnosed with lupus. I feel very much the same way about my cancer.

As most readers of my blog know, I was first diagnosed with Stage 4 Inflammatory Breast Cancer (IBC) in January 2008 after a month of tests. IBC is a rare and aggressive form of breast cancer. One explanation of IBC can be found at the Mayo Clinic website.

Anyways, my cancer certainly hasn’t come to the party alone. Throughout my treatment, I’ve been diagnosed with ailments that I either wouldn’t have without the cancer (or treatment) or that would have taken longer for me to get. Since I was diagnosed with IBC, I’ve also been diagnosed with arthritis, diabetes, and a pulmonary embolism (a blood clot in my lungs). It’s possible that I would have eventually had arthritis and diabetes because they run in my family. However, I suspect they would have come later in life without my cancer and the grueling treatment regimens I’ve endured. The pulmonary embolism is a direct result of having cancer, as my oncologist told me. I take medication for each of these conditions.

In addition, my teeth and eyesight have worsened because of the cancer and treatment for it. Currently, I also have dermatitis (a rash on my face and other places on my body that looks like pimples) and hand-foot syndrome.

Don’t get me wrong. I’m not trying to complain; I’m simply stating facts. Is this cancer different than cancer(s) that other people have? Well, yes. Each cancer patient, even each metastatic IBC patient, responds differently to cancer treatments. My treatment is individualized to me and my cancer and other conditions. I meet with my oncologist once every four to six weeks to see how things are going — what side effects am I having, how does my bloodwork look, etc. She is wonderful at asking questions specific to me, and I feel comfortable asking her about anything.

One place you can go to find out information about cancer treatment is a website called Is My Cancer Different? Is My Cancer Different includes sections on Individualized Cancer Treatment, Frequently Asked Questions, and Expert Insights. Each section includes subsections full of information from patients, medical professionals, and scientists that can help someone who is starting out on their cancer journey. It can even answer questions — or provide reassurance — to those of us who are (or feel like) old-timers in the cancer community.

I am so glad that my oncologist subscribes to the notion that cancer affects everyone differently. As regular readers know, I’m currently on a chemo regimen that works well for me. However, as my oncologist told me, some women can’t tolerate it. She also told me that some women have been on this combination of drugs for three years or more. That would be a good thing, of course, because I’ll be on this regimen until it stops working for me. At that time, she’ll find another chemo regimen for me. She’s told me that a number of women can live for “many years” with my condition. I haven’t yet – nor may I ever – ask for her definition of “many years.” You know, I have that nine (almost ten) year old son I’d like to raise to adulthood, and of course, I’d love to be here on this earth beyond that time. I just don’t know what the future holds.

No, my cancer – unfortunately – didn’t come to the party alone . . .

even though there was no invite.
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Cross-posted to Just Enjoy Him.