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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at the end of breast cancer awareness month, a woman continues to target breast cancer survivor (me)

Recently I wrote about the woman whom seems a little obsessed with me, and not in a healthy way. We are now at the end of #PinkTober or #BreastCancerAwarenessMonth and the same woman still is a bit obsessed with me. She posted the item on the left in the collage yesterday. I didn’t personally see it because I blocked her on social media so I just don’t have to see her stuff.

The funniest thing is about what this woman posted is the photo she posted of the woman smoking above isn’t me. I’m a breast cancer survivor, I don’t smoke, after 10 years of tamoxifen and hot flashes I don’t even ever have more than one or two glasses of wine every couple of months. So I’m guessing that’s like some blonde joke on brunettes that we all look alike. The other thing about that photo in particular is I have not been to a public meeting since COVID hit. Truthfully I’ve been very few places since COVID hit, even after having received my third a.k.a. “booster” shot. I don’t go any place that is a large crowd or that I am not sure of the status of the people in attendance. That particular photo was taken at one of these crazy recent school board meetings near where I live in Southeastern Pennsylvania. And they are a mob scene because of all the ant-vaxxer anti-maskers.

I live a permanently immunocompromised life, we all do if we have had or are going through treatment or are newly diagnosed with breast cancer. So for me personally? I support the parents in the school districts who are trying to do the best by their kids. And that means COVID shots and masks. And I support the teachers and educators in all of the school districts who also want the same. I do not respect or support the people fighting them on this, and the woman who keeps posting things about me, is one of those people.

She has made herself a public figure by making herself a public spectacle. She literally flips out at meetings (it has been caught on video). She has been quoted and has given quote to the media. She posts bizarre thing on Facebook publicly. She is lead in litigation against a local school district thus far denied by courts based on what has been published.

Why am I posting this on my breast cancer blog? Because it’s still #PinkTober (which I honestly dislike as mentioned before) and she still targeting me and I am a 10 year breast cancer survivor and I have a right, to my opinion regarding masks and vaccines. Why? Because I live a permanently immunocompromised life. And people like this put anyone who is immunocompromise at risk. It’s not fiction, it’s science. Which of course is why I also don’t get why these people don’t want children protected?

And by going through my archives here I was able to date the photo she used of me in the hospital gown. And you know when that was? When I was getting the needle biopsy and other testing before my breast cancer surgery. She posted it like an FBI most wanted poster. Someone told me yesterday it’s still up. Why she chose that photo is known only to her. But as I said recently, could it be a purely bitchy female move as to embarrass me by posting a photo of a me in a hospital gown? Is it to bully me? Come after me? I still don’t really know her motivation, and I honestly don’t care. But it made me reflect on the past decade, a little more in depth then on my 10th breastcancerversary or the recent date of stopping Tamoxifen.

So in the spirit of that reflection I’m going to post another collage. It might offend some people because although certain parts are covered up and tinted to be more artistic, they are of my breast of which there is 10 years later less than half left. The last photo is a recent one. My hand has aged 10 years and so has the breast it is very shrunken, and sometimes yes it bothers me, but I know I don’t want fake breasts.

Today, me and my very shrunken left breast are stepping out into the light. I have survived 10 years post breast cancer as of June 1. Or 10 years just recently because it’s the anniversary of finishing my radiation. Or 10 years as of September having finished my Tamoxifen.

So if this woman wants to run around posting photos of me, and ranting and raving that’s on her. If she wants people in her community to start crossing the street when they see her coming, whom am I to interfere?

This is definitely one of the odder things about my journey, but because photos of me are being posted from 10 years ago in a hospital gown as I began my breast cancer journey I consider this part of the journey

The final collage is the very personal various stages of going through this. Just after surgery, well into radiation when your skin feels and looks like raw meat (the photos with what looks like a rash – my skin was raw and burned towards the end ), and 10 years later when everything has shrunken down and you’re 10 years older, the breast is 10 years older, your hand is 10 years older. It’s a very humbling experience.

This disease can be hard on your body and your psyche. But I am not ashamed of my journey with this. So that is my take away from the continued attention of this woman. None of us are perfect, especially after coming through a disease like this. Don’t be ashamed, wear your scars with pride.

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#ThinkBeforeYouPink

Ten years later, I still #hate #pinktober because there is nothing pink or fluffy about breast cancer. And I don’t like all of the companies which profit from this month because very little of their pink profits goes to charity.

#PinkPower is pure bullsheit. If you want to wear pink because you like the color, wear pink. But don’t wear it for Pinktober.

If you’ve ever had breast cancer, we live with this every day even if we have been cancer clean for years. Pinking it up doesn’t make it better, it just sort of makes it like a cartoon and I find that offensive still 10 years later.

I am all for positivity when dealing with this disease because it’s important, but making everything various shades of Pepto-Bismol pink for a month is not helpful.

#ThinkBeforeYouPink

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