hello 2023: social media and cancer

I posted the following on someone’s cancer timeline about those voluminous and far too frequent Facebook posts about people with cancer:

“Hi – I read the post all the way through. I am an 11 year + survivor of one, and do battle with another cancer that people take for granted.

However, I am not sharing this post because well, it’s too negative. I have deliberately chosen to be positive in the face of a very negative disease and live my life as best as possible because I figure that we are all a long time dead.

If you want to be helpful of those who have or have had cancer, be positive for THEM, be patient, just be there. Posting things are only a grim reminder of what they/we are dealing with. We already know, thanks. Lifting someone up with grace and positivity is amazingly helpful and supportive.”

I am starting backwards, right? Well it’s because of this latest no better than asking people to spread spam post flying around Facebook:

I’m told that chemo, radiotherapy (and immunotherapy) treatment, can take years until you feel alive again … With the side effects of chemo and radiation, you will never be 100% again because your immune system is weak. Ruins marriages, families and relationships with friends. Because you’re not the same again after cancer and treatments.

In the hardest moments you know who your real friends are or who the people are who appreciate you.

Unfortunately, like with most friendships, Facebook friends will leave you in the middle of a story. They want a post to ′′like′′ for the story, but they don’t really read your message when they see it is long.

More than half have stopped reading. Someone may have already gone to the next post in their newsfeed.

I have decided to publish this post in support of close family, friends and relatives who have fought this horrible disease.

Now I’m focusing on those who take the time to read this post to the end … a little test, just to see who reads and who shares without reading.

Cancer is a very aggressive and destructive enemy of our bodies.
Even after treatment, the body is devastated. It’s a very long process.

I would like to know who I can count on and who takes the time to read this.
When you have finished this, write ′′Done′′ in the comments.

Sadly, cancer is still the illness of the century. Please, in honor of someone who died, or who is battling cancer. Everyone says, ′′If you need anything, don’t hesitate: I’ll be there for you.′′ So I’m going to make a bet, without being pessimistic: I know my family and friends will put it on their wall. You just have to copy. I did it for someone very, very, special! We all know someone who stood before us, and who has fought or who is fighting this battle.”

~ LATEST FACEBOOK CANCER SPAMMY SHARE POST

It’s 2023 people. Have we not learned yet that posts like this are bullshit? That they are essentially spam that do nothing?

The person who posted responded to me that they were posting for a friend who has had cancer come back again. That they don’t normally post like that.

I figured that they posted it for a reason, but to another breast cancer survivor and somebody who fights another cancer (I dance with skin cancer) when you see these posts they don’t make you feel warm and fuzzy. And if you are going to post things that asking people to share, then you have to be prepared that there are going to be other opinions.

And I will also say that I have friends that have had horrible breast cancers, some who live with metastatic breast cancer. They get up every day and they move forward because they want to fight and live their best lives.

However long that might be.

And you have no idea what it feels like as a breast cancer survivor every time someone you know who also had the disease in one form or another dies. But for them, we move forward.

I am not trying to be mean. But you out there have to understand how it will hit a lot of us who have had things like breast cancer, and other cancers. Yes, it’s hard for our family members but it is unbelievably hard for us and that is why I did make the conscious decision to be as positive as possible. And I am not a positive person by nature I’m just not, but it has gotten me through.

There are life blessings in the midst of severe heartbreak and hardship. That is all I’m trying to say.

If you know someone going through breast cancer the first time, or going through a recurrence, pay attention to them. Trust me when I tell you that I know they will need to vent at times, but this is a crazy obnoxiously personal battle and there’s also that thing in there where there’s a cry for help because they just don’t know what to do with how they are feeling.

As human beings, we can offer support, but there are also things where we have no expertise. And people need professionals to work things out with. said, along time ago that a lesson I learned when I was first starting my cancer journey from a friend who has dealt with thyroid cancer. A lot of their adult life was that she told me that sometimes you have to go down the dark side of the mountains in order to climb back up. That you need to climb back out up to the light.

OK it’s because of things like this and days when you are just simply not feeling your best for whatever reason, that I take to heart what a friend of mine, who lives sober said to me when I was starting the breast cancer journey. And that bit of advice that has stayed with me since then it’s like a 12 step program of life – you take things one day at a time and get to the next day. You keep trying. Every day won’t be perfect. It can’t be that’s human nature and life, but you take the good with the bed, and as my husband tells me, don’t borrow trouble.

So maybe offer people a hand up. Don’t regurgitate the negative that we as cancer patients and survivors and existers live with every day.

Trust me when I tell you that if we’re all honest with one and other, there are things we live with more than we want to talk about.

Take me, for example. I watched the second series of the Netflix show Firefly Lane. In the final episode of the season, one of the main characters discovers a rash on her breast that is a horribly invasive breast cancer. That has haunted me for a couple of days. Why? It’s our not so secret fear which bubbles up once in a while: “it” came back. I hate when it happens, which by the way is the main reason I hate the overly long breast cancer commercials on TV. It’s also why I have a difficult time with funerals. A gift that COVID-19 gave all of us was people starting to also live stream the funerals of their loved ones. For me, that’s easier to handle. Sometimes I legitimately can’t get to a funeral, other times I just can’t handle an in person funeral emotionally and that’s okay. At 58 I give myself permission to say that out loud.

So Happy 2023, people. I do count my blessings that I am alive and around to scribble my thoughts.

Be a blessing in a cancer patient’s life. Or anyone who is ill. That means realizing that our cancers or whatever aren’t about everyone else all of the time. You can choose to be supportive without being fake positive. You can be supportive without perpetuating negative feeling spammy posts on Facebook.

Needless to say, I will not be posting this on Facebook. There are too many people that won’t understand. Or can’t understand. After all, it’s easier to judge and point a finger then try to be different or just better.

Thanks for stopping by.

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oh christ it is october, think before you pink.

Consider this your annual PSA that I have been providing for 11 years now. Buying pink crap helps the bottom line of corporate America, not so much breast cancer patients, survivors, and victims.

Every year as soon as October 1st arrives, so do the ads and solicitations for us to “buy pink.”

Every year as soon as October 1st arrives, a lot of us experience PINK PTSD, myself included.

I can’t stand it. And look at the charities they “donate” minimal amounts to: mostly the Susan G. Komen pink pig of a pink business. More overhead than anything else.

See:

Inside Philanthropy: Does Komen Need a Cure of its Own?
Paul Karon | December 11, 2019

HEALTHCARE & PHARMA
FEBRUARY 8, 2012
Insight: Komen charity under microscope for funding, science

By Sharon Begley, Janet Roberts

There are more articles out there. Look at their IRS filings.

You want good breast cancer non-profits? Do your homework. Often look local. BreastCancer.org, Chester County PA’s own Unite for HER, and Living Beyond Breast Cancer are three of my favorites.

But most of all? Be your own advocate. Get your mammograms, pay attention to your breasts and any changes, if there is a familial cancer history get genetic testing.

Don’t buy pink crap, be real.

Happy October 1st. I still hate #Pinktober

Think before you pink.

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it’s official: 11 years clear

Well it’s a little late but it’s official: all clear on the mammogram. I have to say once again that I really like the radiology technicians who operate the mammography equipment at Penn Medicine. My tech today was simply awesome. And it’s a nerve-wracking thing for me every year since my diagnosis.

I am one of the lucky ones and I know it. That comes with mixed emotions. I’m happy but sometimes I’m sad because of the people I know who have left this earth whom I knew who had breast cancer.

It kind of takes its toll on you emotionally. So yes, I do have to work at being positive sometimes. Eleven years have gone by and I am the same person, yet a different person. Breast cancer does age you in a way. I know so many women who try to run from that aspect of the disease. It’s not the be all and end all, but it just is part of this. Aging also happens one way or another.

I have actually created a photo collage of me then and me now. I don’t post many photos of myself but sometimes I do. After all, I had that crazy woman last October posting photos of me in my hospital gown right at the beginning of this journey asking who knew me like it was a wanted poster.

I am also 11 years older than when I started this whole process. Sometimes that’s a little hard to take when I look in the mirror, but I’m not somebody that wanted replacement breasts because the whole idea of that THEN and today of expanders and implants just didn’t sit well with me. Especially when I learned how they have to shove the implants to the side to get a mammogram.

So, I have a shrunken lopsided breast and a regular old 58 year old breast. I don’t necessarily find that or me attractive most of the time and it makes me self-conscious. BUT…I am alive, so I will take it. I included in this post two radiology images from today: what is left of my left breast, and the right breast.

My tech and I chatted about all of the excuses women give to NOT get mammograms. Please don’t make excuses. You’re a long time dead.

I am one of the lucky ones, and I am grateful.

Carry on and get your mammograms.

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standard of care.

This is a more generalized healthcare post, as opposed to being specifically about breast cancer.

Now is the time of year that I have my seemingly endless rounds of doctor’s appointments. This week alone will be hundreds of dollars in co-pays.

And when we go to our doctors we want to be able to spend a little time with them, but hospital systems all over seem to be double and triple scheduling their professionals. I had that happen today. I didn’t mind waiting and my doctor was a little bit behind not terribly behind, but I know he was behind because of over booking because when I got to my section of the waiting room so did two other women for him, which means he had been triple booked for the same time or within a few minutes of each other. That is not fair to our medical professionals, nor to us as patients.

When I was talking to one of the nurses today who was helping me, she said the other problem is no matter what the health system or the hospital, everywhere is short-staffed. I know that’s true because since two hospitals closed over the past few months in the Pennsylvania county in which I live in (Chester County, thank you, Tower Health), the wait times in emergency rooms are 6 to 8 hours minimum.

In addition to long wait times in emergency rooms, people just can’t get appointments. And it’s not just Southeastern Pennsylvania, it’s parts of New Jersey and a lot of the state of Delaware. Hours upon hours of waiting time in emergency rooms, with some people having no choice but to get treated via the ER because they can’t get appointments with a regular medical professionals to deal with things.

Back to where I live in Chester County, Pennsylvania . Tower Health out of Reading, PA totally screwed a large part of the county in which I live by closing to hospitals, Brandywine and Jennersville. They have put a dangerous burden on the rest of the hospitals near where I live which could affect me or anyone detrimentally. And that is a standard of care that I don’t find acceptable within the Commonwealth of Pennsylvania. For example, I can’t imagine being told as a cancer patient getting treatment in one of these hospitals that they were dumping all their patients and closing! It boggles the mind that the state didn’t look into them for malfeasance.

But the thing is there are situations like this playing out all across the United States. We are supposed to be one of the richest countries in the world yet we have the poorest healthcare system. It was improving for a while until it wasn’t. Our costs keep going up as insureds and patients. Yet what we get as far as approved healthcare services does not keep pace.

I just found (for example) out my annual limits for my lymphedema physical therapy. It cost me $100 a week and co-pays just to do this. Lymphedema is not something that is never completely cured, you learn to control it. Part of learning to control it is going through the physical therapy for it because it’s extraordinarily helpful. Yet, it’s like my insurance company doesn’t take that seriously for me as a breast cancer survivor. So I will finish out what sessions I have left for the calendar year 2022, and have to essentially reapply in 2023. Nothing is continuous. it’s bullshit, quite frankly.

This year I had to change my 6 month oncology appointment because my insurance company wouldn’t budge three days as to the time frame in which they would pay for a mammogram. And going over this mammogram is a big part of this one particular bi-annual visit.

Sounds petty and it is. You see it’s not just a new calendar year now, you have to be at least 365 days from your last mammogram. I was literally a handful of days short. So I had to change all my appointments to suit them as in the insurance company. I think that is also bullshit, quite frankly. I am the cancer patient and cancer survivor, not them. They should be more accommodating of me, yet for the privilege of paying through the nose to have health insurance, I have to be accommodating of them.

So again, it goes back to the whole topic of standard of care. All I see are medical professionals trying to make it work so they can treat their patients. And it’s impossible. It takes forever now even to get scheduled for surgeries that aren’t elective. As patients, it’s also very hard to connect with your medical professionals sometimes, even for basic interactions.

It shouldn’t be so hard, yet it is. And this is the time of year every year that I end up feeling like I have a mild case of medical PTSD because it’s such a pain in the ass to get everything done. And I am detail oriented and know how to (mostly) navigate the system.

Something has to give.

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11 years plus a day

Yesterday I kept waiting for someone to remember. Actually no one did. But like most survivors of breast cancer, I remembered. Yesterday was 11 years.

11 years ago today I was recovering from a successful surgery.

In honor of my breast cancerversary, I ordered wire cloches for my garden pots, so when I put my Tabasco peppers out the squirrels and chipmunks don’t try to dig them up as seedlings. I am also having my bio energy done.

Life and time march on. And that’s the point of this. It’s not some guilt trip for people not remembering my cancerversary. It’s the fact I have had the great gift of life after breast cancer.

😊

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almost 11 years

In a couple of days it is quite remarkably, 11 years since my breast cancer surgery. The date was June 1, 2011.

So much has changed in my world since then, and cancer aside, all for the better. as I said to someone just a little while ago, having breast cancer in a weird way freed me to be a better version of myself. I am never going to say that having breast cancer was easy, because it was not. It was hard. But you have to decide for yourself how you want it to be, and if you want to live happily after breast cancer.

I haven’t had my mammogram yet because the way my health insurance does it now is I can’t have it until 365 days have passed since my last mammogram. And I will never understand that because what does it matter as long as you’re getting it in the following year? And literally, I would not have been able to get my mammogram until after my oncology appointment, so now I have put everything back which will reset my cancer clock to a different time going forward.

Believe it or not, my insurance company would not bend to let me get my mammogram a couple of days ahead of their 365 day clock to keep everything on schedule the way it has made me comfortable for 11 years. Yes IBX/Independence Blue Cross, I am talking about your mammogram game. It’s obnoxious and stupid and petty.

I guess this isn’t one of my longer posts, it’s just to mark the passage of time and say that I am still grateful to my surgeon, my oncologist, my radiation oncologist. I’ve been off of tamoxifen for a while now and I do feel a lot better, I must admit.

I turned 58 recently. That in and of itself seems somewhat inconceivable since, well, I remember 17. I am very aware that I am here living my life, and people I know have lost their lives to various cancers including breast cancer.

Life is a meandering journey, I still feel that. You think you’re on one path and then you’re on another and then you have breast cancer. Breast cancer has definitely been a game changer in my life, but I’m still here. And that’s what I have to remember.

I have been doing physical therapy for lymphedema and I find it super helpful. But what fascinates me are the other women I see coming in for lymphedema treatment. And they make me sad. I look at so many of these faces and it’s like they’ve stopped. I don’t want to say they’ve given up, because I don’t know their journey, but I just wonder how they are, if that makes sense?

11 years later, I still feel women who have been on a breast cancer journey tend to recognize that in other women. It’s a weird sixth sense. It’s a weird sisterhood that none of us asked to belong to.

I’m still not nor will I ever be a Pollyanna. I have good days and bad days. I still struggle a lot of days with being positive even though that was a conscious choice when I started this journey 11 years ago. But I think that’s all part of being human. In that vein, I am not super human.

I will still admit quite freely that breast cancer does mess with a woman’s sense of self. It is hard some days to look in the mirror at what’s left of my left breast. This disease can be hard on your body and your psyche. But I am not ashamed of my journey with this. None of us are perfect, especially after coming through a disease like this. Don’t be ashamed, wear your scars with pride.

So here I am on the precipice of 11 years breast cancer free.

God is good.

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mammogram appointment needed, not spanish inquisition

As I am writing this post I’m beyond a little salty and I already called the patient experience person at Penn Medicine’s Chester County Hospital because I am pissed off enough.

I’ve been having a hard time trying to get my annual mammogram scheduled and I have a diagnostic mammogram in the system, and for that I can go to a location at a place called Fern Hill, that’s pretty close to me, but it’s getting the appointment that is difficult. There have been either wait times so long I couldn’t sit on phone perma-hold, (a perennial Penn Medicine problem), or it’s the scheduling office lunch or break time.

So I called today and the woman was basically quizzing me on why I need a diagnostic mammogram. And no offense, unless she is an oncologist or oncologist nurse in charge of my care it’s none of her damn business.

I have now asked for a new prescription for a regular mammogram to hopefully speed it up. I don’t know if I need a diagnostic one specifically, but that is what was ordered. As a breast cancer patient, I have been pretty much getting those since I was diagnosed 11 years ago.

It is a well-known fact that all women don’t always like having to get a mammogram. And to get this mother superior meats high school librarian type on the phone is not helpful. Some women would just not call back after that. I am not one of those women. But I did go to my care team as well on this.

I understand our medical needs where I live are very stressed because of two hospitals that closed at the end of 2021, but I didn’t cause that to happen I’m just a breast cancer patient trying to keep up with what she is supposed to do.

What’s really funny is I was getting ready to write a post about getting treatment for lymphedema because I have found it so incredibly helpful. But all that goodwill has kind of gone out the window right now since I received the Spanish Inquisition on with my care team decided they wanted me to have for a mammogram.

If I can’t get a mammogram that means I have to put off my oncology appointment. If I put off my oncology appointment, I don’t know when I will get another one without waiting months more.

I pay through the nose every month for health insurance. I have always kept myself insured. And throughout this entire breast cancer journey I have done everything I am supposed to do. But when they start making it difficult for people to get the basics like mammograms it makes me not want to bother. And I know that is not a life choice I have the luxury of making.

So Penn Medicine/Chester County Hospital this post is for you. You guys saved my life and I am grateful for the care team that I have, but I think I deserve a little better as a patient when I pick up the phone to schedule an appointment.

That is all.

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it’s about the lymphedema

Yep. Lymphedema.

That’s my leg in the photo at the bottom of this post. And I tinted everything pink, I don’t actually have bad circulation 🤣 But lymphedema isn’t pretty, and tinting it pink just amused me. Probably because everyone makes everything breast cancer related pink.

Anyway, not all breast cancer patients get lymphedema, some of us like myself, escaped it for years.

When they take out your sentinel node during surgery, they always tell you don’t do anything on that side. No blood pressure cuffs, IVs for future surgeries, bloodwork, etc. I avoided everything on my left side where the sentinel node came out until I had knee surgery on my left knee. Then the swelling started in earnest.

I had bits of swelling in my left arm years ago, right after surgery. But it did not last. Thank goodness. If I fly I have to fly with a sleeve for my arm. Every breast cancer survivor should get fit for a sleeve for the arm where the lymph node came out to fly with.

Lymphedema is obnoxious and I only have it to a lesser degree. I have friends who have this quite badly. They get wraps and other treatment. Mine is almost like massage. It’s manual lymph drainage. It’s fascinating because the movements of the therapist are light and slight, but the results are unbelievable. The fluid just goes away and the swelling dissipates.

With me the lymphedema occurs primarily from my toes to the top of my calf. Sometimes it creeps past my left knee. And it’s funny, I’ve had meniscus surgeries on both knees now and the left knee took longer to heal and longer for the swelling to go down and now I know why. It was lymphedema.

With lymphedema when it’s going on my left leg doesn’t have the same mobility or range of motion as my right leg. It also feels more and more like lead the more it swells. Sometimes the left leg feels warmer than the right. It’s weird.

My doctors at Penn Medicine have been supportive about my trying to get this under control now so it doesn’t get worse. The way I understand it is I will always have this. My physical therapist is awesome. I have a bunch of exercises I do each time and along with the massage/lymph node drainage. And my leg is measured every time.

It used to be kind of difficult to get therapy for lymphedema. As a matter of fact I didn’t know I could have it until it showed up in my left leg over the past couple of years. If you are suffering from lymphedema, talk to your care team. The physical therapy for it is helping. I totally don’t love that breast cancer gave me yet another gift. But I am grateful that I have access to the tools to help make it manageable.

Be well.

What my leg looks like when it’s starting to swell.
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christmas thoughts: year ten draws to a close

Ten long but pretty darn good post breast cancer years is drawing to a close. It somehow seems inconceivable for 10 years have gone by so quickly, and then I have been so lucky. And I have been.

Friday was my last oncology appointment for 2021. And I spent a wee bit of time in the chemo/infusion lounge waiting for my flu shot.

While I was in the chemo lounge waiting for my flu shot there was first of all the lady across the way from me who was talking on her cell phone about some man and all the child support he owed, and how long he was going to have to work.

Next there was this little tiny old lady on a walker who came cruising by and honed in on the snack cart for chemo patients at the edge of my little “room”. She opened her purse and I swear she emptied most of the snacks in the cart into her purse. And then she couldn’t get her mask up because her one hand was full of treats still, so I said to her “Honey put your treats down and then you can pull your mask up” and she turns she looks at me and smiles a big smile and says “Thank you that’s a great idea.”

It was also Christmas sweater day. Even my oncologist had one on! But as I was leaving I saw one of my favorite people who has worked at Penn Radnor oncology as long as I can remember. We stopped and we caught up for a minute and it was so nice. And that’s the thing the weird thing about this disease: you meet people, you make friends, you get through it.

These people have also been part of my story and my journey this past decade. Along with the people I have encountered every visit. For the most part the people have been positive. Some haven’t been. Fortunately they fade into the background and melt away. But that’s the thing about this whole new normal. Life weaves in and out in between and through all of these appointments that have become a big part of my routine.

I ran into someone I know recently who is more recently into this journey. She went through surgery and treatment in the thick of COVID19. I think that must have been hard…and lonely. My friends went with me to radiation. COVID19 took that away from cancer patients. But the good news is she was given her treatment by the radiation oncologist who was also mine, Dr. Marisa Weiss.

So this woman and I talked. And talked. I get where she is, and the feeling of sheer madness I remember experiencing because of all of the questions and sheer emotions. She asked me if I was ever afraid of a reoccurrence. I have written about it that. Sometimes I still have these little thoughts that wrinkle across my brain. Especially now because I have been off Tamoxifen since September, but I was on it for 10 years. And then you just stop taking it. So then it’s a little like walking a tightrope without a net, and it is hard to realize/accept you don’t need that particular net anymore.

And some days I wonder what the future holds. I don’t have a crystal ball. BUT I have to NOT forget my paternal grandmother who was the oldest survivor of breast cancer I have ever known. She had breast cancer at a time when there was no treatment. There was surgery, yes, but that was it. And she lived into her 90s, and it was NOT breast cancer that wrote the final chapter of her life.

I also have a life long dear friend who lives with another metastatic cancer. She’s doing her immunotherapy infusions like a trooper. She got a literal Christmas miracle this week when she received the news that her current treatment was definitively working. The nodules that would not move have shrunk so much they have disappeared!

And we have survived COVID19 thus far. Cancer and treatment and meds no matter what stage of disease/treatment/life after means we are instantly immunocompromised . That news combined with a virus like that is no joke. So those who do not wish to get a shot can spare me their reasoning because they put everyone else at risk. Please get a shot and if someone asks you to wear a mask, it’s not such a big deal .

Readers, we have no guarantees in life with or without breast cancer. We can only do our best and believe.

Have a magical Christmas wherever you are.

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thinking of you

Thinking of you.

You know who you are.

The surgery should be over by now.

I respect your boundaries and your quiet way of being. But I am still thinking of you.

I know you read my blogs, so I just wanted you to know I was out here, sending light and positivity.

xoxo

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