survivors have a responsibility to pay it forward

I am 7 years and 1 month breast cancer free. I would not have gotten here without the occasional support of other survivors before me.This is, after all, a journey like no other. And not a journey I would wish on anyone, but it’s part of life…sadly.

I don’t pretend to be an expert on this disease, and everyone’s cancer is different so I can only say what worked for me. Part of what worked for me is this blog, which is like a living online journal of a sort and talking about breast cancer openly. I think journaling helps. You don’t have to blog, but try to journal. The exercise of getting the myriad of emotions out is so helpful. Think of it as releasing toxicity.

People almost visibly wince when you mention breast cancer. Ummm, yeah, don’t wince on my behalf because (a) you didn’t go though it, I did and (b) I am alive.If people are uncomfortable when you say you have or had breast cancer, let that be ON THEM. Not you. You have no damn reason to be uncomfortable because they are uncomfortable.

I believe being open with your friends and family is important because they are your support network. That doesn’t mean the support network gets to run your disease, however. They are there to support you, not control you. If they can’t be supportive, let them go for a while. Your energy needs to be on you.

Be positive.

I am not always positive, I don’t think it’s humanly possible 24/7, but I try. But deciding to be positive through surgery and treatment made a difference.

Don’t be afraid to ask questions of your care team. It’s their job to answer every question you might have. You are paying them to save your life, after all.

Take advantage of “breast benefits” – nurse navigators, nutritional and psychological counseling, and so on.

Be prepared to take on health insurance companies. Again, you are paying them for coverage and you don’t have to necessarily take what they say lying down.I know, I know this all sounds exhausting. But it’s not so much that as simply being proactive, and being your own best advocate.

Even if you think you can go to appointments and treatments by yourself, don’t. Trust me, extra ears are so helpful. And the company helps. Among the hardest things for me going through treatment was watching other women doing it alone. Don’t be alone through this.

Post cancer life is your new reality. I have been pretty lucky, save some side effects from radiation treatment and Tamoxifen.

The Tamoxifen side effects are hot flashes (which 7 years in to a 10 year drug plan have regulated a bit and aren’t as bad as they were the first couple of years) and early cataracts. Now I have had family members on both sides of my family with cataracts, so chances are mine would have happened anyway, but Tamoxifen has accelerated them so I am growing them in my 50s. When they are “ripe” I will have them removed. I also have intermittent joint pain. I do NOT like the joint pain, but exercise does help.

Radiation. Well while undergoing radiation my hair did thin out a little and it changed texture for a couple of years. It also made me bone weary towards the end, so remember even Wonder Woman takes naps. Radiation therapy can damage your thyroid. That is something new for me, hypothyroidism. But in fairness, genetically it may come naturally because apparently my mother has been off and on synthetic thyroid meds for decades. And my sister lives with Hasimoto’s. I was recently diagnosed with hypothyroidism.

I am a bad cancer survivor sometimes and like to avoid needles and blood work. But a nice but firm nurse practitioner who works with my primary care physician made me sit still for a full physical. Now I understand why I kept getting so tired, even with proper amounts of sleep. We will see how I do on thyroid meds and I have more blood work in my future.

Look, do I like the fact that even 7 years post breast cancer I have way too many doctors appointments? Oh hell, no. But, the bottom line is I chose life and we are a long time dead.

I still have the newly diagnosed and family members of newly diagnosed reach out to me. Some folks I know, some I don’t know. But I want to pay it forward so even if it is just me lending an ear I try to do it.

Recently someone reached out who has a loved one with a stage 4 diagnosis. That is hard for me because I was stage 2 and very, very lucky. Metastatic cancer is tough, and their loved one had the initial reaction to refuse treatment. I hope their loved one changes their mind, but if they don’t, I hope everyone respects her decision. Breast cancer is a real my body/ myself moment. I chose to fight and I chose to have the recommended treatment. But not every human being is going to chose the same path as horribly cruel as that sounds. All we can really do is love one and other at the end of the day.

Another recent development is once again learning about women who have never had mammograms. Sorry, not sorry, THAT terrifies me. Is the old boob squish fun? No, but again, you’re a long time dead, so take advantage of every damn mammogram and every bit of genetic testing available.

If you are a survivor, don’t hide. Shine your light. Pay it forward.

Again, I don’t pretend to be perfect. And as survivors are we suddenly blessed with advance medical degrees? No. But we’ve been there. So pay it forward. We’re all only human, after all.

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the waiting is the hardest part

June 1st was 7 years.

Today was the official all clear.

Lucky seven. The waiting is always the hardest part.

I am still one of the lucky ones. That is hard some days to wrap one’s head around.

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seven years

Today is exactly 7 years to the day that I am officially breast cancer free. It has been a crazy seven years.

And I will say it again, that everything since breast cancer has been an amazing journey.

Life is good. I am alive. I celebrated by having lunch with a very dear friend from high school. While we were out I found the quote that is the screenshot closing this post. It seemed oddly fitting.

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so here we are

It’s the end of March. It has been a long and snowy winter. And with spring having just arrived, it’s time to start the next round of breast cancer related appointments.  That is how I begin the season of renewal and rebirth.

First up will be the mammogram.  Then the oncologist.  Then hopefully I will be free and clear for another six months to a year.

I make my appointments. I keep my appointments. I love my care team and I still get anxious.  It is a crazy thing, but I do.

Life and time march on.  I am one of the lucky ones. I know that and am thankful for it every day.

I never told you guys that my sweet man and I made it legal in November, 2017.  I will admit finding a dress was a challenge thanks to the lopsided post-breast cancer breasts of it all.  But in the end, the right dress found me and it all worked out.  We had an awesome day and we were surround by people from every stage of our lives that we love very much.

My friend who is a milliner made me white silk poinsettias to wear in my hair since I am not a veil person.  We had a surprise wedding.  We invited people to a holiday party.

It is almost 7 years since you my dear readers, and I began this journey.  I know I do not write very often at this point, but I do think of you and your encouragement over the years.

And I will write soon.

 

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a word about pink trains and breast cancer

The author of this article I am about to link this post to writes the most wonderful articles and the Wyeth Family has done so much for Chester County, Pennsylvania and are indeed a National Treasure.

But as an almost 7 year breast cancer survivor (June if I am so blessed), this pink thing on the part of the Brandywine Conservancy and Museum of Art seems more about pandering to the Wyeth family than actuality drawing attention to breast cancer and supporting all of those dealing with it, living with it, surviving it.

I am truly sorry that Victoria Browning Wyeth is fighting breast cancer (wouldn’t wish it on anyone), but this display? It’s not about fighting breast cancer it’s about one family.

Don’t misunderstand me, I applaud those who support anyone through this disease BUT if it were truly about breast cancer it would be tied to something that raised funds for breast cancer research, treatment, or did something for the comfort of breast cancer patients at nearby Chester County Hospital (as one example off the top of my head.)

It would be fabulous if Ms. Wyeth and Brandywine Conservancy and Museum of Art would re-think this pink train thing. Do something that does more than something that feels like an exclusive mutual admiration society. Millions are affected by breast cancer. If you want to keep it local, partner with an organization like Chester County Hospital and resist pink pandering.

My opinion on this will not win me any friends in my home county, but I am unapologetic in my assertion that people need to think before they pink. Even with the best and most honorable of intentions.

Chadds Ford Live: Museum trains on track to battle breast cancer
Posted by Kathleen Brady Shea on January 21st, 2018

The Brandywine Conservancy and Museum of Art has given procrastinators reason to rejoice: Its popular holiday model trains will be displayed through Sunday, Jan. 28.

Even better, the unprecedented extra time comes with an addition to the Brandywine Railroad O-gauge extravaganza: a train car that promotes breast-cancer awareness….Stewart said that Dave Jensen, a veteran of the train display, added the breast cancer awareness car last week. “I asked him if it had any significance, and he said he put it up for personal reasons since he has a friend who is battling cancer now and in general to highlight breast-cancer awareness,” Stewart said.
Since May 2016, Victoria Browning Wyeth, the youngest member of the renowned Wyeth family, has publicized her battle with breast cancer in an attempt to help others. The granddaughter of Andrew and Betsy Wyeth said this week that Jensen contacted her to let her know about the addition that she and others had inspired.

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stop calling!

Since it is no great secret that I think “breast cancer charities” that employ compensated solicitation callers (cold callers) are the scum of the earth, you think they would stop calling me right?

But no…. they don’t. So I called the above number’s headquarters this afternoon. The Breast Cancer Charities of America in Texas.

I never signed up for anything of theirs, I never attended any of their events, and I certainly haven’t given them any donations. Yet they magically know I am a breast cancer survivor.

Sorry that still bugs me over six years later.

I got some perky pony on the phone. In her up-talk voice she had to tell me that they operate these solicitation calls through a third-party and it takes a while to get them removed. So I gave her the 411: I’m putting her on my blog and I have been requesting to be removed from their list for months.

Good charities don’t do this. Period.

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#pinktober truths

Ahh #Pinktober. Ask most women who have had the disease, and who are still in treatment for the disease how they feel about a month-long barrage of cheap pink marketing ploys and they will tell you they dislike the farce.

I am a very lucky six year survivor. But my nouveau reality is not pink and fluffy.

First of all, it’s the fact that breast cancer is expensive. It doesn’t matter how good you think your insurance is, get a cancer diagnosis and get on the hamster wheel of endless or endless feeling medical bills.  After a while you begin to wonder if anyone covers anything and what have you been paying for every month you pay your health insurance premiums?

Secondly, breast cancer is a time eater.  It is a crazy time consuming time sucker.  Doctors’ appointments, treatment, physical therapy if you need it for say lymphedema, etc.  You begin to want to neglect other appointments like the dentist, etc because you feel like life is one big doctor’s appointment.

But you persist, because the alternative involves not being on earth any longer and giving up. Giving up is not an option for me.  But today I am tired, and I am going to lay out some of what else I feel.

I am actually so tired a lot of the time.  This crap some days still sucks the life out of me.  I am cancer free but six years into a ten year script of Tamoxifen.  Radiation gave me osteopenia.  As per WebMD:

Osteopenia refers to bone density that is lower than normal peak density but not low enough to be classified as osteoporosis. Bone density is a measurement of how dense and strong the bones are. If your bone density is low compared to normal peak density, you are said to have osteopenia. Having osteopenia means there is a greater risk that, as time passes, you may develop bone density that is very low compared to normal, known as osteoporosis.

What does this have to do with Tamoxifen? Well because of the side effects  of aromatase inhibitors meaning a potentially greater risk of things like actual osteoporosis, they kept me on Tamoxifen once I was in menopause (first chemically induced, then insured forever by a full hysterectomy a couple of years after breast cancer surgery.)

Tamoxifen has been the lesser of drug evils but not without issues.  I used to sleep.  Now it is a struggle.  Irritability and mood swings.  Inability to concentrate and you do not retain as much as you used to – menopause brain with Tamoxifen ribbons. And flirtation with baseless depression some days.  I say baseless because I know nothing is wrong, but it is like I can feel this fog creeping over me.  And I have to work to shake it off.  Being positive has never come completely naturally for me.  I have learned through just being grateful to be alive to be more positive.  But some days are just a struggle.

And weight gain.  Tamoxifen gives me what can only be described as what women who experience pregnancy hunger cravings.  Between first the progestin they put me on BEFORE my diagnosis after 35 to control the ovarian cysts, fibroids, and horrible ungodly periods and Tamoxifen until a few months ago, all I did was gain weight. Along with the weight gain is a messed up digestive tract.  I actually think radiation is the culprit there.

I was never a fat person growing up.  I always had appearance issues and was never pencil thin, however. It wasn’t in the genes for me.   What was in the genes however, were some of my mother’s obsessions. I love my mother but I grew up in the shadow of an image and weight obsessed mother.  A few years ago I started to actually fight back against it because every damn conversation at some point turned to either women (a) who let themselves go or were (b) fat according to her.

Breast Cancer hits the female psyche in so many ways, but probably none more so than causing poor self body image.  I have been no exception and it has been hard, so hard.

First there is the big old part of my left breast which was removed due to disease and the stage two tumor that was too damn close to becoming a stage three tumor.  I have made my ultimate peace with that as I am not a candidate for flotation devices, err fake boobs. But some days I am quietly in tears in the mirror.  I am so damn lopsided.  I am alive but feel like I have Quasimodo breasts some days.  And pre-cancer, I had enviable natural breasts.  The kind women pay lots of money for.

But I am alive. That is what I have to remind my ego of the I am not 25 years old anymore person.  But it’s such a pain in the ass.  Bras hurt because left side tissue is so gone and continues to settle.  But I can’t go bra-less or I look like a  woman from the hills of poverty.

The weight gain has been very hard.  It is slowly starting to reverse because of the physical therapy I had to start post knee surgery.  I am still doing physical therapy.  And I am working my ass off literally and slowly.  I realized partway into therapy it was one of the first things I had really done for myself to change the status quo in years.   I was so tired after surgery and treatment that I just stopped everything.  It was easier to just be tired.  But now I know I can’t allow that tired to take me over.

I am blessed because just as I have had the most amazing cancer care team, my knee surgeon knew just who to send me to for physical therapy.  My therapist doesn’t just let us sit there and mark time. He motivates us, pushes us, tease us, cheers us on.  He has gotten me moving.  Slowly the weight is coming off.

And I am so damn proud of myself some days.  Yet…some days the evil twisted whispers of poor self body image creep in.  The funniest thing that hardly anyone says anything.  Sometimes but not often.   Truthfully now is the time I could use an atta girl or two. But I guess I wil have to give them to myself.

So when us lovely survivors see the glitzy and glossy marketing campaigns during “Pinktober” we aren’t rah-rah about it.  We’ve lived it.  Cancer is not pretty. It’s not pink or fluffy.  It’s not a pink cardboard box of cookies, or a crappy pink rubber bracelet.

And we have zero respect for the companies that capitalize on a disease that may have killed us given half a chance, and which has claimed many we have known and loved. Pinktober with the endless cancer commercials makes me vibrate to the point of panic some days because all I hear is cancer, cancer,  cancer. 

I am lucky to be here to be able to write this.  I know that.  And I have some friends who live with Metastatic Breast Cancer.  They are my personal heroes.   We as survivors and patients come in all shapes and sizes, most of which really aren’t trendy and Hollywood.  It’s real and it can be raw.  Be supportive, but please understand when I say some days you have no idea how this feels.

I realize this post is a lot to take in.  I used to love October, but now part of me dreads it.  I wish people would rock more fall colors and less pink garabage.

Is it November yet?

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