Five years. It’s official. I am FIVE years cancer free. N.E.D. or No Evidence of Disease.
Yay!!!!!!!!!
Five years ago right now I was a haze of leftover anesthesia and pain meds. Today is June 1st and five years ago now I had a partial mastectomy or lumpectomy.
Next week I start my five year tests. Mammogram, visit to oncology breast surgeon, and oncology visit. I am scared.
Funny thing is the only person who remembered today was my friend Barb from high school who lives in Virginia. I didn’t want fanfare, so it’s fine, truly.
But today I also lost another friend to cancer. And I do not know what it is about being a survivor, but you feel each loss of another survivor so very much more acutely,
It was April 13 when my friend Peggy messaged me to tell me her latest testing showed Her cancer was back and she had cancer in her liver and 3 lesions in her cerebellum. She also told me she was going to Marisa Weiss at Lankenau (who is also my radiation oncologist.)
We messaged back and forth until about a month ago. She had also told me about her job at QVC going to Poland and wondered what she would do after 28 years. She would even describe the early morning sky on the way to Lankenau.
The last time we connected was April 25th when I saw my first bluebird ever in my garden. Peggy always took these amazing nature shots. She was a truly gifted photographer. She also loved her garden and her cats.
So I hit 5 years today and Peggy died today. So soon on the heels of another new friend dying, Ann.
I have to admit it’s really hard. Today is 5 years to the day since my surgery. I’m still here and grateful to God like no one truly understands, but so sad I have lost two friends to cancer in 2016.
Why do some of us live and others die? Don’t just tell me the cycle of life, even if in my heart I know that is the answer. Today it’s so bittersweet out.
Remember Peggy and Ann in your prayers. They were both lovely women.
And thank you for all of your support over the past five years.
I belong to one breast cancer group. Sometimes I can’t visit it online because there are posts that upset me. These are the posts of the people who just arbitrarily without a doctor’s approval or disapproval.
Then there are the posts of people who see cancer as some sort of a warped competition, as in their cancer is more important, more difficult, and bizarrely better than your cancer.
Yes it always garners a big WTF from me. This morning it pissed me off.
There was a discussion on Tamoxifen based on some new research that runs contrary to the five year and ten year schedules of taking the drug. So naturally there are discussions from women like myself who are on it. some have side effects, others do not. Then we have women who haven’t started it who are terrified, terrifed of something they have NOT yet taken.
Ok all of you who are “too afraid” of the side effects of tamoxifen seriously? You are a long time dead. Yes after five years (headed to 10) there are side effects of joint pain, sometimes feeling blah tired and depressed or moody and weight gain for me. I hate that, I hate looking at myself in the mirror but if it means I so drastically REDUCE the chance of recurrence, and well ladies, I suck it up. I am afraid of dying more at the end of the day.
I am terrified of recurrence and… well… all freaking drugs have side effects. And Tamoxifen as per my doctors for me has the potential for fewer than aromatase inhibitors. I love my breast cancer group but sometimes I stay away because of posts like this.
I went to visit this morning because my five year post breast cancer mammogram is coming up soon, and well, I am not just apprehensive, I am truthfully scared. I have never ever at any time even since diagnosis and treatment been truly scared. It’s not rational, yet it just is.
Cancer isn’t a competition for Christ’s sake. And sometime from other survivors you get this sense of unworthiness, like each of us with our individual cancers have not suffered enough for them to find our feelings credible.
STFU already.
Jesus. Way to go ladies, just invalidate how everyone else feels why don’t you?
You know what? That’s on these women. I can’t help their anger like my drug side effects are less worthy than theirs all because my cancer has the dumb luck of MAYBE having a lesser recurrence rate than theirs. THAT is offensive to ME. And I do not roll up in my breast cancer group very often mentioning my side effects.
Do breast cancer drugs affect quality of life?
Yes they do.
And these women really should shut their mouths about what kind of surgeries people have had. Every surgery is different, every cancer is different.
So with all due respect, they might want to think about what THEY say with all their discussion of “respect”. I guess in their eyes since I only had a lumpectomy or partial mastectomy I am not as much of a woman as others who had more flesh taken?
The reality of this is women who spout nonsense like this at other survivors aren’t really interested in what others have to say. They only want to be heard. In my opinion that is as lopsided as my breasts are now. Usually I tune them out. Today I write about them.
I apologize for being so cranky but I recently pulled muscles in my back and shoulder and pain is still radiating down my butt. I have literally been in bed most of the week. Still in bed today and spent most of yesterday even in bed.
But even worse I had a bit of a scare on Tuesday. I felt like someone was sitting on my chest or diaphragm. So I went to a hospital run urgent care (makes a big difference) and they took me right in and two EKGs later- acid reflux disease and a potassium deficiency.
So now I have to take this protonix stuff for six weeks. After I had radiation my stomach started to get acid-y. Almost five years ago I started rads.
Anyway this all sent my BP thru the roof because well I admit it I am scared of the five year post breast cancer mammogram. It is on June 6th.
Sorry to be Debbie Downer stuff is just tugging at me. I hate feeling useless. Sitting still is hard. And still I am just so darn tired.
But I will get past this. Mostly just needed to vent. And I need to get the five year post diagnosis mammogram behind me. It’s got that same looming feeling final exams used to have at times.
Thanks for stopping by.
Tomorrow is a very emotionally loaded day for me. And it’s not because my high school reunion weekend is starting again , it’s because it was five years ago tomorrow I received my breast cancer diagnosis from Dr. Dahlia Sataloff calling me from a conference somewhere in Colorado (I think that is where it was) because she didn’t want some random person to tell me.
Shortly after that I received a care package from Charleston, South Carolina. It was from my lifelong friend Karen.
Well oops she did it again and I’m crying again because she has been such a loyal friend to me for so many decades at this point. Even though her birthday is first the week before mine, she sent me a birthday box now.
She always knows. And she always buys people things that are meaningful to them. She is incredibly thoughtful. And intuitive.
I have been a bundle of emotions as this anniversary arrives. I just can’t help it. So much has happened in five years.
Yes, I have been surgically altered and treated for breast cancer and will live on Tamoxifen for up to 10 years. Thus far no recurrences thank God, but my life has changed so much in five years. Wonderful, positive, amazing changes… and I still think a lot of all that would not have happened if I did NOT get diagnosed with breast cancer.
I remember vividly the day I received the news. I remember that room spinning, semi-stunned moment. I also remember how people were when I started to divulge the news. Maybe I shouldn’t have told people at my reunion, but it was like the words came tumbling out. I had decided I needed to be open about what was happening to me, and that was when I also started this blog.
But what I have learned over five years is a lot of people can’t handle discussing cancer. Or they can’t stand hearing it discussed. Or they think you are weird for discussing it. hell, sometimes I feel weird being able to discuss it. Or sometimes I can’t handle discussing it at all. It became my new reality five years ago, and not by choice.
In the span of five years I have lost friends new and old to breast cancer as well as other cancers. I have friends fighting breast cancer and nasty forms of leukemia now. And here I am. One of the lucky ones. I am blessed, I feel blessed.
I remember five years ago friends from high school at the reunion asking other friends if I was OK because I was open about having received a breast cancer diagnosis. I remember how I felt and my replies to them only I heard because I kept it to myself and just smiled every single time someone said something like that.
What did I say to those people at the time? Nothing much.
This however, is what I was thinking:
Am I OK? F*ck no. I just got diagnosed with breast cancer. Part of me is terrified but I know I will fight. I know I want to remain positive no matter what happens, but haven’t quite figured out how to do that yet. What I do know is sorry for the inconvenience but the only thing I do know right now is I have to talk about it. I need to talk about it.
And outwardly I smiled, I chatted, I drank wine with my classmates from high school and I took photos.
I was at that moment terrified. I never really acknowledged that emotion until much, much later because I was afraid it would slow me down and hold me back.
And guess what? At five years a bit of the fear is back. I am fighting it. But I can feel it and I have to acknowledge these feelings. I am not having my mammogram I am due until my reunion weekend is over. So next week I make my appointment and face my fears head on. Again.
Thank you for being on this journey with me.
Five years. Wow.
Sweet dreams are made of this
Who am I to disagree?
I travel the world
And the seven seas,
Everybody’s looking for something.Some of them want to use you
Some of them want to get used by you
Some of them want to abuse you
Some of them want to be abused.Sweet dreams are made of this
Who am I to disagree?
I travel the world
And the seven seas
Everybody’s looking for somethingHold your head up
Keep your head up, movin’ on
Hold your head up, movin’ on
Keep your head up, movin’ on
Hold your head up
Keep your head up, movin’ on
Hold your head up, movin’ on
Keep your head up, movin’ on~Eurythmics “Sweet Dreams
I was speaking with someone today about 3D mammography. Also known as digital breast tomosynthesis (tomo). Guess what I learned? While health insurers argue about paying for this kind of mammogram, apparently those on Medicare or Social Security can get this new and definitely improved mammogram and how crazy is that? If the U.S. Government thinks it is OK, why not all health insurers? of course this is what I now fear and I won’t know until my next mammogram if Aetna will continue to pay for the only mammogram that really works on my dense breasts.
Seriously.
Flash back five years ago this time. They knew I had a lump. Only on traditional mammography AND ultrasounds nothing showed up as suspicious. Yet they knew it was there. Crazy. And yet I read articles all of the time that talk about how insurance companies won’t pay for 3D. Here are some interesting statistics on how much more effective 3D is:
Results from studies such as “Breast Cancer Screening Using Tomosynthesis in Combination with Digital Mammography” (Journal of the American Medical Association, June 2014) have been cited everywhere from Web MD to the evening news. This particular study sampled nearly half a million patients and is the largest study on digital breast tomoysnthesis known to date. The results were quite impressive:
41% increase in invasive cancer detected with 3D mammography
15% decrease in recall rate from screening mammography
29% increase in the detection of all breast cancers.
And oh, another interesting fact? 3D mammography uses LESS radiation.
Right now I am sort of a bundle of nerves. It is the whole almost five year thing.
Here is an Op Ed from this week about 3D mammography:
by Dr. Liane Philpotts | Apr 12, 2016 5:00pm
Here’s a medical fact that should be uncontroversial: the better your mammogram, the more likely you are to beat breast cancer.
Indeed, detecting breast cancer is among the most important health challenges of our time. Why, then, aren’t more health insurers covering breast tomosynthesis, commonly known as 3D mammography?
Here’s what we know. Early detection is the best defense against breast cancer. Yet even digital mammograms offer only a two-dimensional picture, which means your doctor may miss your deadly cancer legion or see one where none exists (a false positive).
3D mammograms were developed to conquer these limitations. They allow the radiologist to examine breast tissue layer by layer. When screened this way, fine details become significantly more visible.
Some say that 3D mammograms are still experimental or investigational. On the contrary, they were approved in 2011, and have since been widely adopted around the country. Last year, of the 35 million women in the U.S. who were screened for breast cancer, 10 million underwent a 3D mammogram.
What’s more, the clinical results are consistently clear. Data published in hundreds of peer-reviewed publications reviewed 750,000 exams. The numbers speak for themselves: 3D mammograms reduce false positives by up to 40 percent; detect invasive cancer more accurately by 41 percent; reduce the need for a diagnostic mammogram by up to 37 percent; and strengthen the positive predictive value of a biopsy.
As a result, costs for patients, insurers, employers are lowered; recalls are reduced; and cancer is detected earlier.
Still, some insurers remain unconvinced. They ask, “Does the data stand up over time?” It does. Just last month, the University of Pennsylvania published a large, longitudinal study in JAMA Oncology. (This is the fourth independent study of its kind.) Not only did 3D mammograms dramatically decrease the number of callbacks for unnecessary follow-ups, this breakthrough was also sustained over time. At my institution, the results are not only sustained, but continually improving over time.
The study found the same pattern for the detection of invasive cancers: on average, these killer cancers were identified 15 months earlier.
Connecticut must be a hot bed battle ground as I found another article about 3D in the Hartford Courant that had a great photo of a billboard I approve of (and I hate billboards). Apparently one is right outside Aetna headquarters:
Now theoretically I should be OK since in Pennsylvania they mandated by law women should be able to get 3D mammmograms :
POSTED: October 06, 2015
Women in Pennsylvania who undergo breast cancer screening with the latest advance, three-dimensional mammography, will not be charged extra for it.
Gov. Wolf’s office announced a new policy Monday under which insurers must cover all screening mammograms, including the 3-D versions, at no out-of-pocket cost to consumers.
Three-dimensional mammography, also known as tomosynthesis, was approved in the U.S. in 2011 for use in combination with standard two-dimensional imaging. The dual approach is catching on, bolstered by rigorous research that shows 2-D plus 3-D increases breast cancer detection while reducing false alarms. Although the radiation dose is doubled, it remains below safety limits and can be reduced even further with the newest computer software.
Tomosynthesis addresses mammography’s primary limitation: When the breast is squashed, overlapping tissue can hide tiny malignancies while making normal structures appear suspicious.
Some insurers still consider 3-D to be experimental and don’t automatically cover it. But last year, the American College of Radiology declared it is no longer investigational. This year, Medicare began covering 2-D plus 3-D, reimbursing an extra $56 over 2-D alone, according to the radiologists’ group.
Yeah OK. I need to get my mammogram scheduled. Enough avoiding it. I have never avoided them before so I need to stop being a big baby. Yes I know I am being a big baby. Five years is a big deal. I am nervous and realistically I don’t know that I have anything to be nervous about. Just overthinking things.
Hey you out there? Do YOU need a mammogram? What are you waiting for? If I have to go, you too.
I have been chewing on this a few days, a woman who was a new friend that I had met not long ago by accident died of stage 4 breast cancer recently. She was diagnosed with stage 4 and found it valiantly for a few years.
Maybe it is not rational to mourn the loss of someone I did not know very well, but I do. She was kind of amazing. She was a poet and an artist. She was also just so damn nice. I am a little sad today about it. It’s distracting me so that is my signal I need to write it out.
How we met was completely by accident. A neighbor and friend had connected with her over an abandoned churchyard and graveyard that none of us have any ties to but are drawn to. We met for coffee. There we were three women sitting in a Wegmans’ cafe talking about a graveyard that housed none of our dead. And then there it was: that weird recognition women with or who have been treated for breast cancer have.
We all stayed in touch the three of us, but after mid December, I did not really hear much. I knew she was undergoing treatment that was new and she was tired from all of the insurance stuff, scheduling of home health nurses and so on. But she was always upbeat.
Metastatic Cancer is what she lived with. She is not my only friend who lives with it. I live in terror of that and they are all so brave. So here I am coming up on five years. I am here, and another wonderful woman is gone. That is hard to comprehend. It’s not being negative, it is just not a fun place to be. Some call it survivor’s guilt. I get it. But for every amazing woman this crappy disease takes, it makes me as a survivor want to live the best life possible even more.
I wrote about her in the fall when she asked all of us to share something she had written about living with breast cancer.
Here is what she wrote then:
Well, it’s “Pinktober”/ National Breast Cancer Awareness Month & I am emboldened (see photo). This is part of what Stage 4 breast cancer looks like for me.
I write now from my weekly chemotherapy chair and in half an hour I travel down to Philly for my daily cutting-edge radiation treatment at Penn. At some point I will likely experience brain, liver, and further bone metastases, along with the pain I contend with. I will be in treatment for the rest of my life, however long that may be…. I hate October.
As a mother, sister, aunt, cousin, sister-in-law, daughter-in-law, friend, I would URGE you all to support research into PREVENTION this month vs. finding a pink ribbon “cure.”
We are doing something terribly, terribly wrong: 1 in 8 women will develop breast cancer in her lifetime.
Let’s work on the CAUSE end of things.
Of the 596 current breast cancer studies, only 22 are looking into PREVENTION.
And of course clinical trials are looking to drugs to treat the disease & extend life. Beneath the shawl in the photo is an area of aggressive skin metastases and a mastectomy scar which I will not share.
PLEASE help to keep my daughter, my nieces, my sister, sisters-in-law, cousins, friends from struggling through this devastating disease. This month I will be looking for and suggesting to you places to donate toward research into PREVENTION.
Please give generously and honor the future of those women and young women closest to my heart.
Thank you so.
On April 7, 2016 she was gone. It showed up on her Facebook page. I had reached out to her in March, but never had heard back. Now I knew why. So damn unfair.
Heaven has another angel. Rest in peace, Ann.
Already the Heart
The spinal cord blossoms
like bright, bruised magnolia
into the brainstem.
And already the heart
in its depth — who could assail it?
Bathed in my voice, all branching
and dreaming. The flowering
and fading — said the poet —
come to us both at once.
Here is your best self,
and the least, two sparrows
alight in the one tree
of your body.A.V. Christie / The Housing
And they think this is any better? Any LESS objectifying? Saw this on Facebook. File under more pink B.S. Come on now you know we can’t fight breast cancer unless we sexualize it.
Eyes rolling somehow I do not think they would be wrapping up my almost 52 years old lopsided breasted self in pink hazard tape and blowing my hair with a wind machine. These people should listen to what they wrote – what “entire” package are they saving here?
Through the window. Taken at Loch Aerie March 30, 2016
Well in a few short weeks another high school reunion will be here. So much has happened in five years, so much.
But what another Shipley reunion also means is I am creeping up on the five year anniversary of my breast cancer diagnosis. I have to admit I am really going back and forth in my head about this.
I think I am having a wee bit of a hard time with this which makes me feel a bit silly.
What a long, strange trip it has been.
I am almost at the five year mark and I am fearful some days. Fear of recurrence, fear of a milestone, basically whirring around too much in my own head about this. So write it out, I will.
I have no rational reason to be afraid. But some days I am.
Maybe part of me is scared because ironically my life has improved so dramatically since being diagnosed with breast cancer.
But I have friends who live with metastatic breast cancer every day, so I need to get over myself.
There is a woman I know now who just had her third surgery in the span of so many months. The first surgeon did not get clean margins…twice. So she has been through brutal chemotherapy and another surgery. I haven’t been there enough for her as a result of the temporary boogeymen taking up residence in my head. I feel badly about that. But I can’t be there until I can be there for myself again.
I am working on it. I am strong. I can do this.
And I have joyful news. My sweet man and I are getting hitched at some point in the near future. We were just getting serious when I got my diagnosis. He is my bedrock, and the love of my life. I don’t say things like that but it is true, he is all that and more. When I see what other women put up with after getting a breast cancer diagnosis, I know how lucky I am.
Your healing is in a big part about your support system. I was and am blessed quite literally.
Now for an irony: I have been told a woman who does not know me but who has targeted me with supreme nastiness because she doesn’t like my blogging and opinions is supposedly a peer counselor at a well known breast cancer charity I like. I hope she is a better peer counselor than she is as a human being in real time.
I am looking outside my window at a sunny day. The trees are budding and daffodils nodding in the late afternoon sun. Birds are singing. Damn I love my life now. Maybe that is part of my fear, which fellow survivors all say is normal for milestone post-cancer anniversaries.
I hope readers aren’t all freaked out by my saying I have milestone fears. Don’t be. I will get there. I have, after all, a lot to live and live joyfully for.
Rose Kennedy said life isn’t a matter of milestones, but of moments. But sometimes, those moments? They are milestones.
This is my friend’s business. I am so proud of Alene! This is my humble opinion a very worth while endeavor
The funny thing about living with breast cancer no matter what stage you are in the disease is the circlular aspect of it. As in it circles back to you. It’s like a not so secret society devoid of a secret handshake.
I think I have written before about how once you’ve been diagnosed you can almost sense other breast cancer people out there even in the supermarket or walking across a parking lot. We seem to see and seek each other out.
I was looking at the calendar the other day and I know it’s time to start making my new round of appointments that are constant even after you have graduated from treatment like surgery, chemo, and radiation. I mean technically I’m still active treatment because I’m on Tamoxifen for up to 10 years, but because I have been lucky enough so far to NOT have to revisit radiation or explore chemo I often just feel “normal” again and my inner teenager rebels again making the next round of appointments. Who wants to go to the doctor when they feel fine?
So I have been avoiding the whole appointment thing and freaking myself out with self breast exams. Why? Well because the breast (left) which was treated to seven weeks of radiation feels completely different from the other breast (right). The left breast feels almost fake – dense and heavy and lumpy bumpy. That is NOT as in so NOT saying another lump, it’s just the way a breast feels after radiation. But when you are doing the whole self breast exam….it’s easy to forget and well it’s freaky.
Yeah, so I gave myself some bruising. Dumb ass I said to myself.
Anyway, breast cancer has been on my mind because well if I make it to June 1st unscathed, I am FIVE years cancer free! My next proverbial brass ring and I want that sucker, darn it.
This past week has been hot flash hell and a week of aching throbbing joints. (Thanks again Tamoxifen.)
This afternoon a message comes through Facebook messenger. A woman I don’t know looking for another friend of mine to ask questions about…breast cancer. So I said well I will be happy to connect you both, but I am a survivor too.
So she and I settled into an actual phone conversation. She and I have this six degrees of separation. It’s crazy the way life works.
As I listened I realized a lot of what I was hearing was me five years ago. Seeking out survivors and those who understand the crazy maze of breast cancer. Because when you are the heat of the battle, some days you feel like you will lose your tiny little mind.
And the six degrees of seperation is insane. Here we are, never having met or crossed paths with so many in common. And once again, breast cancer brings it full circle, closes the circle.
It’s a small world after all. Full of breast cancer circles, apparently.
Not that I am complaining because breast cancer has brought some really fabulous people into my life.
Thanks for stopping by.
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