spring cleanse :: digestive tract tour

April 19, 2014

i eat vegan organic food with fiber as much as i can + want to make sure i don’t have any cancer growing in my digestive tract, where my immune system is based. i chose my doctor because she got 5 stars on yelp :) i had a colonoscopy with no drugs, so i was wide awake + got to see my appendix, large intestine + small intestine :) colonoscopies don’t hurt, because you don’t have nerve endings in there. while preparing for my colonoscopy, i googled + saw that narcotics aren’t necessary or even offered in a lot of countries. i am so happy i got to be wide awake, get a guided video monitor tour of my digestive tract + see when 2 pre-cancerous polyps were found + removed. 1 was flat, which is most often cancerous, + the other looked like a wart. they were both painlessly snared + cut out, so that was instant cancer prevention :) honestly, i wanted to get this important cancer check over with, but i had to reschedule my 1st appointment, because i was feeling panicky. it’s scarey before, but awesome to have it over with + know cancer isn’t growing in my colon. make your appointment to cancer cleanse your colon 20140419-100910.jpg 20140419-101000.jpg 20140419-101018.jpg 20140419-101045.jpg 20140419-101105.jpg 20140419-101132.jpg 20140419-101148.jpg 20140419-101206.jpg

 

mod*mom


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


A Husband’s Love

March 2, 2013

I was contacted through my personal blog by Cameron, a husband who became a caregiver to his wife, who like all of us who blog here became very ill.  He asked me to post his short story, and here it is.

Cameron’s Story:

 

Coming Face to Face with Reality

The gift of life is fragile and few may realize just how precious it can be. On November 21 of 2005, my life changed forever as it was the day that I had found out my wife Heather had malignant pleural mesothelioma. I went from husband and father to now a caregiver. Heather and I had just celebrated the birth of our daughter Lily several months before and had been planning our first holiday together as a family when our lives were turned upside down.

I was thrown into my new role as caregiver immediately. Our physician informed us about mesothelioma and what it entailed. He also gave us an assortment of treatment options, and I had to guide Heather toward making the first of many decisions. We ventured off to Boston to see Dr. David Sugarbaker, a doctor who specialized in mesothelioma.  This began a long a difficult journey to rid Heather of her cancer.

The months that followed were a blur as our normal routines turned into chaos. Heather and I had held full-time positions before she was diagnosed with the disease. As we began our battle together, Heather could no longer work, and I could only work part-time in order to care for her and Lily. We were kept busy with physician appointments, traveling back and forth from Boston and taking care of our daughter Lily. My list of duties exceeded my ability to get things done, and I quickly became overwhelmed with responsibilities. I was kept awake by endless worry. What if Heather died? Would we be able to stay afloat financially? Would I end up a broke widower with a young child to care for? Feelings of helplessness overcame me on many occasions, and I had to find strength within myself to stay positive for my family. Not only did I want to fight for Heather and be her rock, I needed to be just as strong for our daughter Lily.

Heather and I had a wealth of family and friends who helped us every step of the way with everything from words of encouragement to monetary assistance. Going through a difficult ordeal such as fighting cancer is painful and if anyone is kind enough to offer their assistance, you need to take them up on it. I learned the hard way that there is no room for pride or stubbornness in a battle with cancer.

The job of a caregiver to someone with cancer has an endless supply of highs and lows. One of the best pieces of advice I can give to others in my position is to never give up hope. There will be difficult moments, but you have to remember to dig deep and use every ounce of strength you have to remain positive.

Heather went through mesothelioma surgery, radiation and chemotherapy to fight mesothelioma and despite the odds, she was fortunate to conquer this horrendous disease. It has been seven years since her initial diagnosis, and I’m proud to say that she is cancer free today.

I was taught courage, strength and how to balance chaos throughout this ordeal, and I chose to go back to school full-time to study Information Technology. I graduated with honors and was chosen to speak at my graduating class. I relayed to my fellow classmates my difficult struggles and the importance of believing in themselves. No matter what life deals your way, you should never give up hope, and always keep fighting for the ones you love.  

 

Thank you Cameron for loving your wife, and for taking on the very challenging position of caregiver as we here understand what a tough job it can be. 

 


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.


Nicole

November 28, 2012

This has been a tough few years for us at Mothers With Cancer. I think every death hits us harder and we can’t get out of the slump. At least I can’t. I find myself driving my kids around and just shedding tears, trying to hide them from my children because Lord knows they’ve seen their mom cry way too much. Even if they were small enough to not remember going through treatment, they know all too well the emotional pain it’s taken on me. It’s another thing to worry about.
I’m still coming to grips with Nicole’s passing. I’m not really sure how we found each other but I’m pretty sure it was through Susan’s blog. Nicole had been diagnosed just before me and we started commenting on each others blog. Supporting, kind words, encouraging words. Then we blogged together on MWC. Then we were Facebook and twitter friends, although we both lacked the incentive to tweet much. She was my first twitter friend. Then we were featured in an article together here
In May we had a discussion about how hard it is to watch our friends die of cancer. How when we started MWC it didn’t really occur to us the toll it would take on us to watch our friends die of this horrible disease. To know these precious moms would have to say goodbye to their children.
I can’t believe I’m here 6 months later and Nicole is gone. Her sweet children lost their mom way to early. And we at MWC are grieving the loss yet again of one of our own. Nicole was a special person and a support to so many of us. She introduced me to boob humor often laughing at her lopsidedness and nicknames for them. I’m forgetting now some of the terms she used but maybe my MWC friends could help me out. I just remember having a good laugh at her descriptions and silly stories of the pain of prosthetics.
I will deeply miss you Nicole, even though we never met in person. There will be a huge void in my life from losing you, Sarah and Susan. When your faces pop up on my Facebook or when I’m driving somewhere or something reminds me of you…like the knitters at Panera. And the most I can do is pray for the family you left behind and that Jesus will hold them close.


Mother with Cancer Lost Child Custody passes

November 28, 2012

Mother with cancer who lost custody of her children due to her cancer has lost her life.

“Legal and Ethical Issues for Healthcare Providers” textbook sites Alaina Giordano’s children taken away by her estranged husband and a Judge because she was diagnosed Stage 4.

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http://www.facebook.com/friendsofalaina


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