sometimes you read something and say “this.”

Posted on February 20, 2025 by carla
Screenshot of a painting
by Beth Gainer

A friend of mine writes on sub stack. She used to be an oncology nurse. She’s also an artist so she shared this post from a fellow artist and it so resonated with me.

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Spin

My 100th post discusses a media opportunity.

BETH L. GAINER

FEB 14, 2025

About a month ago, I was approached by someone with extensive media connections. We had a nice conversation about my developing art series: Breast Cancer, Female and Young.

Would I want a coveted chance at media exposure for the series?

For those new to my Substack publication, I am a breast cancer survivor and artist, whose aforementioned series depicts tasteful, nude female figures oil painted on canvas. These figures represent women who have been diagnosed with breast cancer on the younger side. The methodology for how I came to create this series can be found here.

The nudes will hopefully resonate with women who’ve been diagnosed and treated for breast cancer, as well as their loved ones. And I hope that Breast Cancer, Female and Young will educate people about how emotionally and physically devastating breast cancer is.

My contact envisioned “selling” the paintings to the press in the following way: the series would start with sadness, but my painting Unfinished Business (shown later in this essay) should exude joyful positivity as a finale to my series.

Breast cancer all tidied up. And someone trying to control how viewers perceive my art.

I found both rather distasteful.

My art series is deliberately non-linear, offering various depictions of the breast cancer experience in no particular order. I do not envision a beginning and an end because cancer is not tidy. For those like me who have survived cancer thus far, there may be a beginning, but often there is no end.

While we are grateful to be alive, we are never quite the same physically and emotionally after experiencing cancer. Collateral damage from treatment wreaks havoc on our bodies and spirits. And PTSD and other types of psychological damage do not give survivors the honeyed lives that some in the press enjoy showcasing.

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This post continues. I just shared an excerpt. This is a great blog as a matter of fact, and I’m going to read it going forward because it’s real.

On my own blog here over the past 14 years, I have had a similar conversation over the years ever since my own diagnosis and treatment. People want to say oh it’s so great you survived and this and that, and yes it is and it gives you a lot of new appreciation on things in life and it frees you in a lot of ways, but you are forever changed. When I read this, I thought I have to share this on my own breast cancer blog because it’s just so true and so real.

The writer and artist goes on to comment about people with metastatic breast cancer, etc. It’s a fabulous piece of writing IMHO and I’ve now subscribed.

It’s reminds me of when I say during breast cancer awareness month that breast cancer is neither pink nor fluffy.

There’s no other way around it, breast cancer is just a lot.

There is the whole thing of getting through the treatment and the meds and then there’s the whole self body image, which once you have had breast cancer is irrevocably changed. Some women get tattoos, some women get new breasts. I’ve done neither and now I’m 60, and when you look at me straight on, the half of breast I have left on the left side that I said 14 years ago looked like a donut peach is now a shrunken donut peach because it was irradiated. It actually shrinks a little more every year. If you look at that just to look at that fact, it’s fascinating, but still sometimes it gives you pause looking in the mirror.

Sometimes I look and I say to myself look at that now, and I used to have pretty nice breasts. But you’re a long time dead, and I’d rather be alive with crooked lopsided breasts. I also chose not to get a replacement breast, etc. because that plastic surgery just wasn’t for me, although I did post- skin cancer reconstructive surgery on the back of my head. As I discussed on this blog before I decided at the time I could deal with half a breast, but I couldn’t deal with a giant bald patch on the back of my head after skin cancer.

So artist Beth Gainer’s post and her particular painting opening her post resonates with me. I look at that painting and I see myself or a part of myself. Now I still have half a breast on the left, which is more than you see in the painting, but that’s how you feel. And I’m not saying that because it’s good or it’s bad because it’s neither, it just is.

I still remember standing in the mirror almost 14 years ago before my breast cancer surgery, wondering what it would look like and feel like. It helped me come to terms with what was happening to me and my body but living it is a different thing …and I’m not saying it’s bad or horrible every day because it’s not.

And people are so obnoxious in general with middle-aged women that you add breast cancer to it and it really is an interesting study in life. I’m a blogger I have been since forever. As I have written here before I have had experiences where people took photographs related to my breast cancer journey, and used them for their own selfish means.

One of the first times it happened it was this kook of a woman who posted the photo I had posted on this blog almost 14 years ago now, when I was just beginning the journey, I posted a photo of me in a hospital gown standing in a mirror. The photo was posted like a most wanted poster in a post office. Who is this woman she asked? Not because she wanted to meet me because I was a breast cancer survivor. It was because I had somehow outraged her with something I had written. Oh, and she did it during breast cancer awareness month. And she used that particular photo as an attempt to shame or embarrass me. Only I wasn’t shamed or embarrassed, I was outraged that you could take a photo like that out of context and try to use it for your own unrelated bullshit.

Then in the fall of 2024, I had another woman do a similar thing. Oh, and the added bonus of she decided to fat shame me. And to tell me how I was supposed to be. Did I mention this is one of those women who claims to empower and lift up other women? Yup.

Back then I wrote that breast cancer is a club no one asks to join, a sorority you didn’t choose, but it does teach you that you are stronger than you think. And facing your own mortality frees you from all sorts of things, and teaches you much.

I continued that here I am and you don’t have to like me or agree with me. But you don’t get to just come after me continually because I do not share your views.

Sometimes I have to think that having had breast cancer taught me to stand up for myself more. After all, you learn early on you have to be your own advocate, while navigating so much that is quite literally out of your control, including your body.

Recently, I had this happen again and it wasn’t even breast cancer awareness month. It’s just this individual who fashions themselves as a public figure and an influencer. Oh and on the side they play at being some sort of a mental health professional and how’s that for rich? Even better? Can it be said that their wife is in the business of caring for other women as a medical professional?

Anyway, this one decided to take a photo from a publication that someone I know puts out. The writer who took the photo is an accomplished writer and journalist. She was actually with me the day I rang the bell after finishing treatment.

So a few years ago when I hit the 10 year mark, I invited friends to join me on a special garden tour to quietly celebrate that moment. It was literally the day of my surgery at the 10 year mark. So I was at year 10 post breast cancer and just starting my 10th year of Tamoxifen.

As I have written so many times before Tamoxifen is not for sissies. It’s also one of those drugs where you basically can go through it with no side effects, or you experience a combination of most of the side effects.

I had the full tour of side effects. The insane joint pain, cataracts, general bloating, occasional inexplicable depression, and terrible weight gain. Would I do it all over again? Yes I would because I’m alive, but it was not a fun drug and it was hard on my body. It was in fact, exhausting. And I live with the after effects of the side effects.

On this June 1 in the 10th year of my surgery when the photo was taken, I was at my heaviest that I have ever been in my entire life. And literally everything about me was bloated even my head, and I have a big head to begin with.

So it wasn’t an ideal photo of myself, but it was me in that moment, and it was honest. I appreciated the photo because I was there to have the photo taken.

Since I began this journey with breast cancer, I have lost quite a few people to breast cancer and other cancers. That weird survivors guilt is one of the things you live with, but it’s a little nagging pain inside your heart.

So this particular photo taken by a woman who was also with me on the day I rang the bell and then wrote about the garden tour, was used without permission by this other person. There’s that of course, and people don’t understand that if you’re going to use or borrow someone’s photo, you should give it proper attribution at a minimum. (I will ask you to note the screenshot above from the artists post that inspired this piece of writing in me.)

In addition to using the photo, this person completely gaslit me. Literally made up a fantastical story as it were and who does that? Well they do when you disagree with them. This whole fantasy was posted in their closed Facebook group. I am not a part of it. I was however, sent the screenshots.

The other thing that was so amazing is how other people became part of what can only be described as a pack mentality. Sociologically and psychologically as messed as it was, it was fascinating. It really was adult on adult bullying and to read hundreds of comments about yourself from people that for the most part didn’t know you, had never met or had a conversation with you, to people that actually did know you and other others that you had helped was really amazing.

One of the people who had a lot to say and likes to tell tall tales to make every situation about them was actually another breast cancer survivor. I just marveled at that.

And of course, in all of these comments came the fat and appearance shaming. And then there was the one woman who actually contacted me to let me know on one hand what a terrible person I was, and on the other hand how she was contacting my friends to do a mental health intervention. (By the way, she never contacted anyone.)

All of that was again supposed to upset me, but the weird thing is after going through breast cancer, you look at people with their silly little nonsense like this and you simply marvel.

As women we have this whole idea of self that is almost societally put upon us. After you’ve had breast cancer, it becomes something and entirely different.

We are living with our bodies that in essence have turned against us. We go through treatment and we’re either called warriors or we’re pink gentle flowers. In fact we’re just women. And we are women who survived something that’s a pretty big deal. So when this other bullshit finds its way to your door, you look at that like another science project.

Another post from this artist’s sub stack that has resonated with me is excerpted below.

Anyway, that’s all I’ve got. I just figured I would share this because when you read someone else’s writing that makes you think, you share it so maybe other people will get it or in this case because she is also a breast cancer survivor, maybe my sharing what she writes will help someone else.

Ladies don’t let any of the bastards in this world get you down. Keep on keeping on. We all have good days. We all have bad days. The point is we’re still alive. Try to celebrate that fact every day. 

Thanks for stopping by.

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Finding My Voice

Being heard through my new art series

BETH L. GAINER

JAN 03, 2025

Some time ago, I wrote about how my vocal chords were adversely affected by more than 20 years of teaching. After I eventually retired from teaching, I went through physical therapy sessions for my voice, which helped. But I’ve come to accept that it is forever compromised.

I’ve been thinking about voicelessness lately. Time and time again, I’ve been silenced – either by having my voice ignored or receiving abuse for voicing my opinion. In either case, I paid a heavy price.

Then came a breast cancer diagnosis that placed me face to face with mortality, terror, and loss of control. I was scared out-of-my-mind shitless that I was going to die young. I luckily had doctors, nurses, and other medical professionals who nurtured me through radiation, chemotherapy, and whatever other nasty medical happenings were awaiting me.

These treatments might have saved my life, and for this I am always grateful.

But being a cancer patient made me feel like I was losing control over my autonomy and my voice.

Because I was.

Before the first chemotherapy session began, my oncology nurse gave me a calendar of when I’d be coming in for treatments and bloodwork, as well as when I’d be seeing my oncologist. When I tried to bargain for a date that would be more convenient for me, she made it clear that I had no choice. I went to radiation treatment at the same time each day, as dictated by my radiation oncologist.

I felt my control over my own life ebbing away.

Granted, these medical professionals were all motivated by the same goal: to save my life. To this day, I am awestruck by a kind miracle: medical staff became part of my family.

And another kind miracle: years after treatment and a preventive double mastectomy and reconstruction, I have found my voice through art. As many of my readers know, I am working on a new oil paint series titled Breast Cancer, Female and Young, which displays tasteful nudes that tell a story on coping with this disease. The collection lends voice to the breast cancer experience. And through this collection – and through art in general – I have found healing and comfort.

This week I’ve been working diligently on the newest addition to this collection, titled Unfinished Business. As always, I like viewers to interpret the artwork as they see fit.

Posted in breast cancer, cancer | Tagged , , , , | Leave a comment

it’s 2025…here’s a reminder or two.

Posted on January 9, 2025 by carla

Hello there all. Happy 2025. I am still alive and kicking.

I saw someone in a neighbor group on social media post about their mother’s friend having an upcoming breast cancer surgery and what should they do and so on.

So I figured this would make a good post.

As a breast cancer survivor I will find out what the person wants BEFORE you go, and don’t go if they are not ready for visitors yet – this is about them, not us.

I would not show up right after the surgery because although I only had a partial mastectomy, I can tell you that you are TIRED and SORE. And a bundle of emotions that change every hour the first couple of days.

The first couple of days all I wanted was quiet and sleep.

I had immediate family there on surgery day. They were the last people I saw before I went into surgery and the first I saw after the recovery room.

Every breast cancer patient faces this journey differently, which is why you have to ask THEM what they want, not us. Not trying to be mean, it is just the truth.

My best and closest friends sent books and things in at first, then visited as long as I felt like it.

I will tell you it was a time where I learned to be selfish because there were people who wanted to be all depressed because I had breast cancer and had surgery. Those people I let go of. This is about the patient.

If someone is having a full mastectomy or not, it’s a lot for any woman. Breast cancer is just a lot.

The best thing any human can do is to be there for them, listen to them.

Soft clothing is one of those things you need after this surgery, Non restrictive. Natural fibers, soft cotton everything was my favorite.

And post surgery, when there is treatment? My friends drove me to treatment, it was called the Driving Miss Daisy list. To be honest, it was those days which meant the most. They made sure as I went through treatment I was not alone. More than presents or pillows or soft clothes or books, that was the greatest most meaningful thing: the gift of their presence.

Happy New Year!

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it’s pinktober so why not body shame a breast cancer survivor, right? ummm, not so fast.

Posted on October 20, 2024 by carla

Like clockwork, if you are a woman with a voice who happens to be a breast cancer survivor, and who also brushed past ovarian cancer barely (thank you full hysterectomy in 2014 to remove septating cysts and more that initially was postponed due to a major ice storm), and who has had enough Mohs surgeries for skin cancer to feel like Frankenstein’s pincushion, by all means fat shame someone who also spent a decade on Tamoxifen.

This is not the first time this has happened, however. It also happened in 2021…during October. Why am I posting this again on my breast cancer blog? Because it’s still #PinkTober (which I honestly dislike as mentioned before) and now someone not so new and of a similar mindset is targeting me and I am a 13 year breast cancer survivor and I have a right to my opinions, including a woman’s right to choose, which is front and center once again this Presidential election.

A woman’s right to choose what to do with her body can and will reach into breast cancer. Why? Because it’s not like women haven’t found they were pregnant while undergoing breast cancer treatment, or about to. Changing a woman’s right to choose affects breast cancer decisions too. What if you were placed in the position of viable pregnancy or life saving breast cancer treatment? That is a struggle that is very real without adding the added pressure of literally facing the possibility that legally you might have the ability to make decisions removed from you. Look, I don’t know about you but it was hard enough facing I might end up with a complete mastectomy instead of a partial before my breast cancer surgery years ago.

So yeah, this election matters including to breast cancer survivors, which means during #PINKTOBER and #BREASTCACERAWARENESSMONTH I am pointing all of this out and encouraging women from all political persuasions to vote for Kamala Harris. Preserving a woman’s right to choose at it’s most basic is quite simple: it’s preserving YOUR right to choose however is best for YOU. Having your legal right to choose is paramount. I mean it begs the question of if these types of political aberrations even think women should vote?

Anyway, this group I refer to as Twatwaffles for Trump are actually Moms for Liberty and Moms for America is just another (earlier and older including age-wise) version. Stepford Wives for Totalitarianism, the worst kind of group think, essentially a loud obnoxious cult. Where I live, they don’t like me. Why is one woman (me) such a threat? I don’t even think about their ridiculousness unless they shove it in my face and once again blame me for the end of humanity. And for what? Simply because I think they are absurd people?

But they do like to target me, and I do not know why they seem to come unglued during October but they always do. So once again they called a jihad out on me. It started in September, but I forgot about it until October.

So she basically is also saying I am fat without saying I am fat as well in her little passive aggressive rant about me just being wrong, bad, etc. Yeah ok, next. I mean what do we expect of women like this? Actual normal behavior? Nope. Just narcissistic nasty hypocrisy. If you aren’t like them, you are against them etc. etc.

They don’t live rent free in my head because most of the time I forget women like this exist because I do not have these types as friends. They also aren’t actual conservatives, they aren’t real Republicans, they are just and assortment of coast to coast nutters under the umbrella of a woman who likes threesomes in Florida, but hey they are all Good Christians, right?

But yeah, body shaming a breast cancer survivor? What’s next a comment about the fact that on my left side I barely have half a breast and that makes me a defective woman?

This one in particular doesn’t like it when you call her out. She projects her behavior on others. I am a predictable and inevitable blogger, like an elementary school playground script, yet she barely gives me a glance? Yet she gave it an @everyone post on social media to get literally everyone in their miserable collective to pay attention?

The bottom line is I still chose not to know these people, and I am good with that. They can live in their echo chambers of hate projecting who and what they are on everyone else….that is what is truly predictable. If you aren’t like them and belong to their psycho Stepford world, (again) you’re bad.

But this was not the end of it. Because I did not cower in the corner this additional magnum opus arrived on social media the other day:

What is one of the things any breast cancer patient and survivor has the most difficult time with? Self-body image. When we look in the mirror, regardless if we have had plastic surgery to give us new breasts, etc we see into our core what breast cancer can do. We have sacrificed pieces of ourselves to just stay alive and be healthy. And that includes the side effects of radiation, chemotherapy, and breast cancer drugs. And I did suffer a lot of side effects and I stuck it out because I wanted to live. I see that as an accomplishment.

I didn’t have chemo, but a post skin cancer reconstruction surgery on the back of my head last year gave me a very good idea what it is like to lose hair. I had the back of my head shaved out for surgery. (This was last October close to this time.) I still remember being not so long out of post-op and I had just woken up out of anesthesia and they wanted me to try to get up and use the bathroom, etc. That part was ok, but then I decided to wash my hands and pat cold water on my face. I did not have my glasses on, and as I was looking in the mirror, I started to see clumps of hair falling the ground.

I literally swayed.

I had forgotten about that part of the surgery as I was waking up. I literally thought in my post anesthesia brain “Wow, this is what it is like for women who have chemo.” It was surreal. I also must have paused longer than I thought because the nurses started knocking on the door, afraid I had passed out or something.

I still very much remember that feeling a year later. I have very good hair, thick hair, so I am lucky it has mostly grown back, although it is still shorter underneath. But as a breast cancer survivor it gave me added perspective into other feelings I had never really explored because until now I had been spared them.

My eyes have suffered because of a decade on Tamoxifen as well as my waistline. I have always been honest about that. I am growing cataracts that make it unable for me to drive at night. My weight has been a struggle. It was just an average nuisance before breast cancer, even though I grew up with an appearance obsessed mother. A couple of years off of Tamoxifen, the drug-caused puffiness and swelling has gone, some weight has been lost, and time will tell if I will ever get back to where I was before. But I have made my peace with it and actually don’t inject myself with Ozempic. I am not pre-diabetic and I experienced so many side effects on Tamoxifen that I don’t think that is a choice for me.

Yet this woman who fat shames and body shames also Ozempic shames so is she judging those who do use this drug and drugs like it? I am not a doormat and I am not putting up with some random obnoxious woman I don’t want to play Barbies with body shaming me, let alone telling me how I am supposed to think. Her little group has spent years at this point harassing me on some level, but if I defend myself or anyone else I am then doubly bad? F*ck that, and no thank you.

I understand that part of this woman’s problem and the problems of her particular camp followers and these extremist groups in general is I actually do have peace and know who I am. I chose not to know them or interact with them directly. And that is the way it actually is most of the time.

However, that being said, they choose to try to infiltrate my world occasionally, and for what? Probably because I see them for what they are and know in my core how terrible they are and judgmental and hate filled. They might as well have a mantra of they support liberty and freedom, unless you’re queer, gay, trans, undocumented, Muslim, black, the wrong kind of anything else their pea brains can dream up, don’t look like them or dress like them, or think like them or anything else they think is bad for America. They think freedom of speech and thought and every other inalienable right that our forefathers fought, bled, and died for are subjective.

Our rights are NOT subjective, and neither should our rights be as women. We are as women being bombarded with the crazy Trump ads as well as everything about breast cancer awareness month. So to have someone who is a woman tell you how you are supposed to feel or you are wrong?

So yes, it’s October, and yet again as breast cancer survivor women and men who probably couldn’t emotionally survive it want to tell me how I am supposed to be? Have they met me?

Breast cancer is a club no one asks to join, but it does teach you that you are stronger than you think. And facing your own mortality frees you from all sorts of things, and teaches you much.

So here I am. You don’t have to like me or agree with me. But you don’t get to just come after me continually because I do not share your views.

And another thing: please vote in November like your life and rights depend on it, because they do.

Posted in #pinktober sucks, breast cancer | Tagged , , , , , , , , | Leave a comment

pinktober 2024: ford is doing something great

Posted on October 5, 2024 by carla

I hate Pinktober. This is year 13 saying that.

But I am going to share something a company is doing that is really good and really helpful.

Thank you Ford Motor Company. It’s called a support belt.

Ever since my surgery, which while called a lumpectomy, it is actually a partial mastectomy and it hurts to wear a seatbelt. It has hurt all these years.

The seatbelt never fits. It shifts. It rubs. It actually does hurt. This is with a little more than half of a breast gone. I can’t imagine how it feels with a full breast gone. I have tried using a small towel. Doesn’t work.

https://www.freep.com/story/money/cars/ford/2024/10/01/free-option-from-ford-will-ease-pain-of-seat-belts-for-cancer-patients/75452063007/

So apparently someone at Ford or in conjunction with Ford has developed a pad accessory and it’s free to breast cancer patients and survivors, but you have to pay shipping.

https://www.ford.com/supportbelt/

I ordered one and thank you, Ford.

Finally something to help.

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ibx denies breast cancer survivor genetic testing

Posted on July 18, 2024 by carla

Independence Blue Cross has denied my genetic testing related to breast, cancer and other cancers.

I am a breast cancer survivor currently in remission, and I have had several bouts of skin cancer. I also had a full hysterectomy a few years ago because I had septated cysts and fibroids. Penn wanted me to do the genetic testing again because there are many updated markers from when I first had the test done 13 years ago.

It is absolute bullsheit that IBX would deny a test that would put my mind as ease as a cancer patient. I am super pissed off about this. I pay my bills to them and I pay on time.

So I am contesting it.

After telling them that I wanted to contest their decision I got this reply:

As a cancer patient still what necessitates a medical necessity? To get cancer again?

This is total bullsheit.

I can’t believe with all the money I pay out for health insurance etc, they can’t allow me testing they have allowed before.

So oh hell yes, I am contesting this you cheap, penny pinching bastards with executives who make more money than God off of our health insurance premiums.

Sign me pissed off.

Breast cancer, the gift that keeps on giving.

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lucky 13.

Posted on May 31, 2024 by carla

I still have to get through my mammogram in a few weeks, but today I saw my oncologist at Penn Medicine, Dr. Hartner. It’s our 13th year anniversary together as patient and oncologist. Tomorrow, June 1 is my official cancerversary.

13 years ago tomorrow Dr. Dahlia Sataloff took my tumor out at Pennsylvania Hospital in Philadelphia. She sent me to Dr. Marisa Weiss at Lankenau for radiation and to Dr. Lee Hartner as my oncologist.

I found out today that my updated genetic testing came back 100% negative for cancer genes as it had before when I first started this journey.

So yes, that means I am still BRCA negative, BART arm negative and negative for the other laundry list of things they look at.

I am simply just one of those people who got breast cancer for reasons other than genetic. My second cancer is still skin cancer, and I have another Mohs procedure coming up.

However, I did find out yesterday after a six month check up with my eye doctor, that yes, my cataracts are growing and will be coming out sooner rather than later. I have been growing them since a few months after I was put on Tamoxifen basically.

I will also admit to being annoyed at the response of some people when I posted in a breast cancer group that I belong to as not something to freak people out, but a reminder that once you are in breast cancer treatment or have been treated for breast cancer you have to do things like more regular skin and eye checks.

People actually told me that there was no way that my cataracts were caused by Tamoxifen. 🤔 Ummm hello? KNOWN SIDE EFFECT. And it’s very specific, because if you develop cataracts as a result of being on a cancer, drug or steroids, the cataracts grow in a very specific positioning…just like with me. And the people who told me that I was wrong are not medical professionals.

I have to be honest this annoys me as much as people who told me how they just randomly took themselves off of breast cancer meds as I was going through side effects with Tamoxifen . No one needs to hear that and it’s stupid to do if a doctor takes you off that’s one thing but you just taking yourself off is crazy.

This is why I don’t go into breast cancer groups very often. Because I don’t wanna be short with these people, but I find it frustrating that everyone on a social media support group seem to know better than someone’s doctors. this is why 13 years ago I didn’t join in person support groups. Because when I had looked into them initially, I found a lot of the people super depressing with 1 foot in the grave, even if they were standing tall and breathing fine, or they knew better than everyone else’s doctors.

People we can only share our experiences with this disease we don’t know better than anyone’s doctors.

13 years have flown. Sometimes parts of them were a little bumpy, but I’m here and I am grateful to be alive and I am grateful to the medical team and care I have had since day one.

Well, that is all I have for everyone. And if the mammogram shows anything abnormal, I will let everyone know, but as of this moment, we aren’t expecting any surprises.

Thanks for visiting.

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breast cancer screening needs to be EVERY YEAR and start earlier.

Posted on May 1, 2024 by carla

A lot of times I tune things on the Today Show out. And that’s primarily because this has gone from being a very good morning news show with good news segments, to a lot of softball and marshmallow fluff.

But they had the segment today about breast, cancer and mammograms and breast cancer screenings.

I started listening because they were talking about the rates going up for breast cancer in women from 40 to 49. I was 47 at my diagnosis. 

So they are talking about mammograms starting earlier and then being covered, etc. etc. 

New guidance issued by the U.S. Preventative Services Task Force recommends that beginning at age 40, all women undergo a routine breast cancer screening every other year. NBC’s Dr. Natalie Azar was the medical professional interviewed.

I believe, given the size of my tumor, which was stage 2 almost to stage 3 when it was discovered, I could have quite possibly not survived breast cancer, if I had fallen into that category of insurance paying every other year for a mammogram.

That’s bullshit. Women should be able to have mammograms not only earlier in life, but insurance should pay for it.

When I was diagnosed, my tumor did not show on a regular mammogram or an ultrasound. I had an invasive lobular breast cancer tumor. It only showed up finally on a bilateral MRI with dye. I had to fight for everything. And this tumor could be felt, but it couldn’t be seen, which is why I had to do a bilateral breast MRI with dye.

At the time I was dealing with Aetna as my self pay HMO. And they sucked. My readers will remember when I started radiation. They did not even want to pay for Biafine cream, so I had to pay out of pocket and it was expensive. It was prescription then and it cost me back then in 2011 over a hundred dollars a tube.

When I was diagnosed with my breast cancer, Tomography was in Europe and NOT FDA approved and being used in the US. Tomography has been a game changer for mammography since it was approved, yet a lot of insurance won’t cover it and they just want the regular, old-fashioned mammogram machines.

Because I am a breast cancer survivor, and I have dense breasts, I am really grateful that I can get a Tomography mammogram.

But if I had to go every other year for a mammogram, I would freak out. And again, if I had to go every other year for a mammogram back when I was diagnosed, I might not be here writing this today.

I really wish they would stop screwing with women’s healthcare in this country. From how often we are “allowed” to get a mammogram to being told what our right to choose with our body should be, it’s really total bullshit.

Legislators in the United States do not like to deal with insurance companies. I mean face it they’re high-powered executives probably fund a lot of campaigns, right? But those of us who are the regular people in this world need consistent access and fair treatment.

Part of that fair treatment involves reasonable out-of-pocket medical expenses. I basically have had healthcare PTSD over the last 14 years. Every time I have to have something, I dread what the co-pay is going to be. Take for example the Mohs surgeries on my skin cancer spots. Usually it’s $1000 to walk in the door every single time sometimes more and then after everything is settled out. I get these residual bills from Penn Medicine that my very expensive and very good healthcare plan won’t cover and half the reason we’re not getting stuff covered is there’s a lot of pork in the healthcare industry and when it trickles down to for us, the subscribers and the insureds we pay for it. Out the ass.

So if they are recommending that women start getting mammograms earlier, they should also be available to everyone and insurance companies not playing reindeer games with our lives.

This is something where I will write my elected officials in Congress and tell them we need mammograms, younger, and they should be available and paid for by insurance every year.

Think about it. Health insurance companies are putting too high a premium on our very lives. We pay for health insurance, they should give us what we should be entitled to as women. It shouldn’t be so hard to get the things we need done. I’m not talking about elective procedures like Botox and plastic surgery. I’m talking about life-saving procedures and preventative measures.

Fight for mammograms. Fight for insurance companies paying for mammograms every year as a basic rights of women in this country. 

Thanks for stopping by.

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skin cancer encore and life moves on…

Posted on April 30, 2024 by carla

Well, here we are. Another Mohs surgery is in my future as skin cancer showed up again. Ironically it’s underneath where I had a skin graft after a Mohs surgery a few years ago now.

My post skin cancer reconstruction surgery of the late fall 2023 is healing really nicely. And the surgery was a success because my hair is growing back really well honestly. It’s still short in spots but it is growing back. 

On the breast cancer front I am still healthy just older. And I really thank God for that.

WordPress just reminded me that 13 years ago I registered with WordPress and this was the first blog on their platform that I started.

My first post here, I just jumped into the breast cancer of it all. I might not write here about this as often, but it doesn’t mean I don’t think about it. Cancer is the gift that never quite leaves your mind once it has visited you.

But how you go on makes a difference. Are there some days that it still bothers me? Oh definitely especially when I get a skin cancer recurrence. But my life is pretty damn good and I have to remember that. And sometimes it’s hard for me because by my nature, I’ve had to teach myself to be positive. It is hard sometimes, especially since I can overthink the crap out of just about anything, depending on the day of the week.

One of the things that makes you stress out unnecessarily is dealing with anything having to mean navigating our healthcare system. Our healthcare system is broken. I pay through the nose self-pay every month yet I seem to be on a permanent payment plan with Penn Medicine for procedures, and testing that is required.

Yes, I need the health insurance I have. No, I’m not going to do some BS plan that sleazoid fake insurance brokers say covers everything and all it really is is catastrophic coverage that takes your money and costs you more.

I have friends and family in the UK and National Health doesn’t seem so bad and there is access to specialists. Except in the US that is the ultimate boogey man. I think in part, it’s a national bogeyman, because it goes hand in glove with our screwy political system. And if there was National Health here, all those insurance company executives wouldn’t have their private jets and their tasty bonuses.

And along with our screwy healthcare system is the burnout rate. Physicians, nurses technicians, you name it. The skin cancer on my face is some things that normally I would get taken off within a week or so, but because of scheduling, I have to wait until the end of June.

And no matter what healthcare system you’re in everyone has the same lament about how hard it is to get a doctor on the phone or a nurse or just a human being not in a phone tree system.

And one of the other things that seems to have cropped up in our brave new world of US healthcare are people who pretend to be healthcare professionals and are not . How can people not check out if someone is licensed or not ? Yet it happens.

In a little over two weeks I turn 60. When I started this blog, I was 47 and I had no idea what the journey of breast cancer would bring me and well here I am.

I’m still standing. And I’m doing much better than just standing. I’m living.

Thanks for stopping by.

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the reality is sometimes harder than the concept.

Posted on January 25, 2024 by carla

When I started my breast cancer journey more than 12 years ago, I had to get through a lot. Everyone who has breast cancer has to get through a lot.

Breast cancer is just a lot. Actually, any cancer is just a lot. And it is a lot to deal with.

I wrote my way through breast cancer with all of you, and like a lot of breast cancer survivors, I ended up with a second cancer. That second cancer is skin cancer.

Skin cancer is no joke. I started having regular dermatology appointments because that’s what my oncologist told me I needed to do going forward after being treated for breast cancer with radiation and taking breast cancer meds.

So, as I’ve written before, I have had no cases of melanoma, but have had basal cell and squamous cell. I have now had three Mohs surgeries, and this past Thursday, I had post cancer reconstruction under general anesthesia on the back of my head where the last Mohs surgery was.

The surgeon and the nurses at Penn Presbyterian Hospital in Philadelphia were amazing. But it was a super long day.

I had a 2 PM surgery and I was on time, but there were people ahead of me in preop with various surgeons, but I think kind of held me up. It’s a big hospital and that happens. There was someone who was dehydrated and they couldn’t find a vein to start the IV before surgery so they had to rehydrate that patient. Then there was a woman across from me who was prepped and ready for surgery and very fidgety, and something wasn’t right with her insurance so that held everything up. And that kind of amazes me the whole thing with health insurance. Here we are as patient trying to use what we’re paying for and we’ve done all of our preparation but they haven’t finished wrangling I guess with a hospital system.

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life goes on

Posted on January 25, 2024 by carla

Well, here we are in 2024.

As I have said, every year repeatedly, what a long, strange trip it has been. But I’m still here to tell the tale.

My mammogram will be sometime in June, and other than that I see my oncologist in a few months for a check in.

My hair is growing in underneath in the back where I had the post cancer reconstruction surgery last fall. I will be completely neurotic about sunscreen and hats this year and going forward. I had always been pretty devoted to keeping myself covered but skin cancer happens.

Recently, I got a note from Penn Medicine about genetic testing. I contacted them back and said I was confused because I already had genetic testing. However, it’s been long enough since I had the genetic testing initially, that they want me to have some more.

I have to be honest it has awakened some feelings in me where I have been going back-and-forth with myself about whether or not to do it. Realistically, I know myself I like to know versus not knowing, so I will get updated testing but still it put my head in a weird place.

Well, that is about all that I have for all of you. I figured I should put some kind of a post up because it is a new year.

All I can say in closing is get your mammograms ladies and don’t be afraid of genetic testing. Because still, many years later, one of the things I find the hardest about breast cancer are the not knowing parts of the disease.

Thanks for stopping by!

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