tales of the breast cancer mean girl and other encounters

I have been sitting on this a couple of days and I still feel the same, so it’s time to talk about a breast cancer mean girl.

I must preface this tale with what led up to it.

I used to participate more in one in a particular breast cancer group but a lot of these groups have devolved for lack of a better description. As another friend and survivor said to me people seem to want virtual hugs and phony prayers more than they wanted actual helpful info. And some of what I see posted I just can’t deal with for different reasons, sometimes just gobsmacked.

I had two experiences recently which gave me pause. The first was a woman who is a survivor, proceeding on her journey post surgery who is also single. Peppered me via private message on social media with questions of sex life after breast cancer and other things that were very personal to talk about with a stranger and time consuming. But I took the time because people took the time for me. But then I see this woman crowdsourcing in a group after I gave her lots of information and places to seek information – including her own care team which is something I don’t understand about how women will crowdsource about things as important as breast cancer and treatment and they DON’T go to their care team, the medical professionals caring for them! People wonder why their doctors aren’t helping them? What is it they don’t understand that they have to actually talk to their doctors about what’s going on especially in their heads through this process?

I also think that these groups even if they are offering support have to be careful they are not crossing the line and giving pseudo-medical advice because a lot of them do. I just feel like every case of breast cancer is truly individualistic, so is the treatment. People can share their experiences, but they should correctly encourage people to go back to their own doctors and nurses and even therapists.

So the next thing that occurred is a woman who rolled up with this bold statement: that she had to get a complete hysterectomy two weeks after starting Tamoxifen. Add a minimum I found that to be an irresponsible statement, going past that wondering how it’s even medically possible? Two weeks into a drug you take for years and your body is barely starting to process it. And yes, there are things that happen like people have allergic reactions to the drug, or in my case I had an allergic reaction to some of the binders and fillers and what not in one form of the generic. Although the drug itself is the same what holds it together can vary from manufacturer to manufacturer.

So anyway, I did tell this woman to get a grip and go back to her care team and if she was uncomfortable about being told she had to have a complete hysterectomy, or to find a second medical opinion. However I also said that two weeks into a use of a drug you stay on for years isn’t going to cause you to have to have a complete hysterectomy, there must be other things going on. The only reason I know that is because I did have to have a complete hysterectomy two years after my breast cancer surgery and two years into Tamoxifen. And with me there totally was a whole medical history. From the time I was a teenager I was growing little uterine tumors, ovarian cysts, fibroids, etc. that’s why I knew before my 21st birthday I would probably never be able to bear my own children. By that time I had so much scarring and everything else.

Two years after breast cancer treatment, surgery, and two years into Tamoxifen technically I was in menopause. But my body being my body started growing these things again. And that’s why I had to have a complete hysterectomy. Because what I was growing wasn’t just staying like a cyst or benign tumor or a fibroid, it was growing differently and septating, so had I not done that I probably would have popped ovarian or uterine cancer without a doubt —- not just my opinion, but medical opinion. They did pathology on everything they removed for me, and it was all cancer free at that point thank the good Lord. But I do not regret at all the decision I came to with the help of my care team to do that. And I am not less of a woman because I got spayed.

Although I talked about having to get a hysterectomy at that time I didn’t go crowdsourcing or off on a tangent of essentially facts not in evidence. And I listened to people at the time who told me not to go off on tangents or anything else, but to stay calm and centered because that was the best way to get through it. People also said to me yeah you’re going to have the occasional bad day but take it day by day. I was also told to make sure my care team knew what I was thinking and feeling even if I felt it was silly.

Well for basically telling this woman that I thought she needed more help and wasn’t processing things well, I was pounced on by other women. It wasn’t warm and fuzzy enough, apparently. And that was fine as those women are entitled to their opinions , but what happened next wasn’t fine.

What happened next is a woman that I avoid in the real world because she’s a mean and crass and snarly tough bitch, has become a part of this group. I don’t know when, I hadn’t noticed her before. But up she popped in a full-on attack at me. The reason she did that was simple: she doesn’t like me in the real world. And I have blocked her everywhere I can on social media, and I go out of my way to just avoid her because she has attacked me before. She is one of those women that no matter what the topic is she knows better than everyone else.

I said to this woman, that although nobody else knew the backstory I know full well the only reason she was commenting and coming after me is because she doesn’t like me. And I said that isn’t really acceptable anywhere, let alone a breast cancer group. And then I blocked her again, because apparently somewhere along the line something must’ve been undone and she was no longer blocked to me. Literally this woman will go on full attack mode every time she encounters me. She is one of those whom I feel dislikes people who aren’t like her. She’s not someone I would ever want to be like and would never trust as a friend, so she is the kind of person I avoid.

For this exchange, I did go to the group administrator, which I’ve rarely done before in all the years I’ve been part of it. But I wanted to let her know that this person was attacking me not necessarily for my opinion in a breast cancer group, but because she didn’t like me out there in the real world, and that to be honest she had done this before. The reaction I got in return was kind of a blame the victim scenario. I should’ve said what I said to the woman with the Tamoxifen issues in a kinder, gentler manner. Sorry not sorry, that doesn’t address how this woman attacked me. So I thanked her for her time, apologized for bothering her, and I’ve been thinking about this for a couple of days now.

Yesterday I ran into someone who told me a tale of this same woman who attacked me verbally in a breast cancer group. Not to get into the nitty-gritty but apparently I’m not imagining things this is the way that person behaves and they were pretty mean to somebody else who is a breast cancer survivor.

Of course the other thing I found amusing or the tales of this person going to retreats and what not to find their inner Zen. Well I think her inner Zen is lost and they should get a refund. I don’t do menopausal mean girls in general, and certainly not in breast cancer groups.

What bothers me the most however, is this woman violated a decade old safe space for me. Sadly, although I might stay, I won’t be feeling like it’s a safe space for me to share in. It puts me back to my initial issues with support groups when I began this journey. There will always be these women who feel they have to dominate, and it’s not a contest. And I get there should be an accent on positive versus negative because this is not necessarily an uncomplicated journey, but I also think we have to be honest and acknowledge it’s not all fuzzy bunnies and hugs. And I really resent women who are bullies going along under the guise of fake caring.

It could be I have reached the end of the road with support groups like this, but I don’t know. Only time will tell. Life is a journey and we can only do our best and speak our truth.

Peace out.

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meeting new survivors

Today it was time to visit the pleasant vampires and have blood work done. The results actually came back but because I don’t know what I’m looking at so I am waiting until somebody calls me because I me and I know I start to freak out. Yes I know it’s completely unrealistic and silly but blood work makes me antsy.

I also met a really awesome lady today. She is just beginning her survivor journey and was waiting for bloodwork like me. These waiting rooms are lonely places these days because you have to come in by yourself, and if you’re not attached to an oncologist there’s certain locations at Penn Medicine where you can’t just walk in to get blood drawn anymore.

It’s always so crazy to meet somebody who’s in a place that you remember. With the questions like will the hot flashes get better. And after you’ve dealt with hot flashes for a few years you could pass on the tips of things that are triggers like caffeine, sugar, alcohol, stressful situations.

And because no one ever told me after radiation I should keep an eye on my thyroid I also suggest that anyone else coming out of treatment.

I really like this woman and I referred her to the only breast cancer group I’ve consistently been a part of over the course of 10 years.

One thing we talked about is something I remember pretty well. When you’re first finished with treatment you are relieved. It’s like a giant weight off your shoulders. But I swear sometimes it’s the people around you who are more excited you are finished with treatment than the actual patient. And it’s not because we aren’t happy that we finished this part of the journey, I think it’s simply because we have been in this uphill race to git r’ done for lack of a better description. I remember back then that it was equal parts relief that I was finally finished, mixed with my gosh I’m finally finished and I know that doesn’t sound like it makes sense but in a weird way it does…your head has to catch up with everything. After all, one thing that breast cancer can do is crowd your head with just so much stuff.

Anyway it did me good to meet this woman and I hope I was helpful to her. She was so nice.

OK people I am going to keep on keeping on with my day.

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ten years of clear mammograms

So it’s official. 10 complete years of clear mammograms.

I can’t even begin to explain the relief I feel. I mean I know I reached my 10 year anniversary a couple of weeks ago, but I hadn’t had the mammogram yet.

I didn’t exactly have a good nights sleep last night. It doesn’t matter how many years go by, once you get the diagnosis you are antsy before your next mammogram.

I spent most of the day doing nothing except puttering around in the garden because I couldn’t concentrate. My husband was so sweet and drove me. He has been with me every step of the way.

“You will be fine” he said as he dropped me off. And our post Covid apocalyptic world they still don’t have visitors in the waiting room, so he waited in the car.

What was weird about the waiting room as there are still no magazines or newspapers or anything like the good old days before Covid. When I got signed in I got taken back to the dressing room where we have to put our clothes in those day surgery plastic clothing bags, because thanks to Covid you can’t use the little lockers.

I had the mammogram and so different from a decade ago because when I started this journey the 3-D tomography mammogram wasn’t available to us in the US. It wasn’t approved yet. So back when I started this process I had to get a regular mammogram and then go get a bilateral breast MRI.

Penn Medicine has terrific mammogram technicians. Today’s mammogram was once again over at Chester County Hospital’s Fern Hill.

Today was a diagnostic for my 10 year. And the diagnosis was all clear.

And I cried. Yep. Not a lot. Just a little.

I am one of the lucky ones.

Then I went home and put on deodorant.

Next up? Being finished with Tamoxifen in a few months.

What a long strange trip it’s been.

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it’s about the 10 years

June 1 I hit a milestone I wasn’t sure I was going to reach when this journey started. Even if I never admitted that out loud back then, there were moments I wondered with some “what ifs”. I don’t think you can help it.

So….Ten years.

I celebrated with friends by going on a garden tour. Not just any garden tour a really special garden tour that meant the world to me.

When I came home there was a message on my answering machine from my mother. So I called her back. Told her I had been on a garden tour and what the garden tour was celebrating. She said yes or OK and then moved right on back to whatever it was she wanted to discuss. It was like breast cancer had never happened for me and I hadn’t reached a 10 year mark.

I have to be honest that gave me pause. And it hurt. She didn’t mean to hurt me, but she is one of those people that never wants to talk about anyone’s health issues, even her own. But still, this is kind of a big deal for me and it would’ve been nice if I had felt acknowledged instead of dismissed.

However the one I’m really upset with if I’m honest is my sister. She is always so wrapped up in her world. This thing called breast cancer isn’t about her it’s about me so I guess I just don’t rate on the radar of life. And why it hurts is it bought up old wounds .

When I had my surgery in 2011, she had promised she would be here the day of surgery. And she bailed. Yes, yes she lives in another state, but she said she would be there and then she just wasn’t. So it made me feel let down. And I forgave her, but I guess on some level I didn’t forget so here I sit on Friday the week of my 10 year anniversary still stupidly waiting for her to acknowledge I have this milestone in my life.

It’s a weird meandering path this breast cancer journey. I have my actual ten year mammogram in a couple of weeks. And I’m kind of nervous already. That annual feeling after 10 years never gets old. I wish it would get old.

I think I will be holding my breath a little bit until the mammogram, which is a diagnostic one, is over and then my oncology appointment which will follow a few days later. And I had already discussed this with my oncologist and I will still be seeing him going forward.

So I will update you all my readers as I get through all the steps of the 10th year. I will be asking my oncologist how the whole coming off of tamoxifen will happen in the fall.

Have a great weekend!

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ten years.

Ten years ago right now I was being prepped for surgery. I woke up that morning not sure truly about how I felt. If I’m honest with myself, brutally honest ten years later, part of me was terrified. But the other part of me just wanted the goddamn tumor out.

I still remember that my surgeon Dr. Dahlia Sataloff was wearing the most beautiful strand of pearls and really cool Dansko clogs that I’m pretty sure had a leopard pattern, or maybe it was ocelot. They were patent leather. My husband was there and my mother and her friend Debbie Robinson.

The surgery took place at Pennsylvania Hospital, the hospital I was born in 57 years ago. I remember at the time that was my ultimate good omen for that day because I had started life on the planet at that hospital. (Sorry I’m a little fey at times.)

Right now I am a bit of a puddle. When you are starting our journey like this you have goals of kicking cancer’s ass. But as the last ten years have taught me not everyone does, and I’ve lost some friends. To breast and other cancers. I have friends in treatment now. I did not know on this day ten years ago what ten years hence would be like.

Life is good and I am grateful. I don’t use the word blessed very often because I think it is over-used, but I am blessed. The birds are singing outside my window and my flowers are blooming.

One of my high school friends, Meredith, left me a present this morning. And a card and notes that reduced me to tears. She left me a card, beautiful little notes, and a selection of tiles from Moravian Pottery & Tile Works Museum in Doylestown, PA. She would have had no way of knowing that I think that’s a super cool place and that I’ve always wanted some Moravian tiles of my own. The surround in my great aunts fireplace growing up was made of Moravian tiles. They were more monochromatic but I still remember that designs.

To feel the love on a day like today is truly magical. I am lucky to be alive and I know it. Thank you to all of you who have been on this journey with me.

Ten years. Hello ten years.

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an anniversary of sorts

Well, literally, what a long strange trip it’s been. Today is an anniversary of sorts.

It was 10 years ago this afternoon, as I was sitting in my then office that my cell phone rang. It was my breast surgeon calling from a conference in Colorado. She didn’t want some nurse to just give me the news she had to share. I had been formally diagnosed with stage two invasive lobular breast cancer.

My first reaction was I cursed, and then apologized to my surgeon Dr. Sataloff. Then I called my not yet husband but then boyfriend and blurted out the news in a jumble of fast moving somewhat surreal words. In his always calm way he simply said “when do we see the surgeon?”

The next day was my 30th high school reunion. I remember some of my classmates asking other classmates if I was o.k. essentially because I told people my diagnosis. I remember feeling pissy about that because, was I fine? It was kind of yes and no because I was processing the news and had decided I wasn’t going to hide this like a dirty secret. I was going to own it, be as positive as I could, and get the hell through it.

And thanks to my friends and family, especially my husband that is what I have done.

Has it been an easy journey? No. Sometimes it has been damn hard and some days sad and lonely. I have lost other friends to breast cancer and other cancers along the way and I have felt those losses keenly and acutely. And survivor’s guilt has reared its ugly head here and there.

A friend recently celebrated her 25th cancerversary. She said if she could get there, essentially she was looking forward to celebrating my 25th with me in 15 years. Yes, more goals. Goals I am happy to work towards and will be delighted to meet. My actual cancerversary is June 1st.

Breast Cancer has been one of the hardest things in my life, and oddly one of the best and most freeing. In spite of all the things that have been challenges, it freed me to be a better version of myself.

I called my surgeon’s office just now to leave her a message. I could tell from the person’s voice when they first answered the phone and I said who I was and that I was a former patient that they were afraid I was going to tell them bad news. And I said look all I’m doing is calling to say thank you. It was a year ago this afternoon that she made a call to me from out of town to make sure I heard the news from her and no one else. She was calm and caring and straightforward. On this day 10 years ago, I needed exactly that.

I don’t have a crystal ball I don’t know what the future will bring. I know I worry too much about things post breast cancer that is one of the detractors, but I’m still here. And I am grateful.

I am not celebrating my 10 year anniversary of survival today because that’s not until June 1 and I don’t want to jinx myself. But today is the anniversary of the day that I really officially started on this journey.

I can’t believe I’ve been writing this blog for 10 years and you all have been reading it for 10 years. What a crazy ride it has been especially through this COVID19 world in which we live.

Thank you for being a part of my journey and I hope you have a beautiful and blessed day.

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shot day!

Today was the day! Shot 1! The COVID19 shot I have been given is by Moderna.

Finally.

I was a bit emotional getting it. It’s been a year living in a COVID19 world as an immunocompromised person.

It was a complete fluke I got an appointment, but since I am 1A , it was time to do this damn thing.

I feel like I can begin to breathe again.

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loss

I lost another life-long friend yesterday. To cancer. Not breast, but a nasty glioblastoma.

She was a very private person, so although I have known since August, 2019 she was sick, I have kept her peace. She asked me to do this, and I honored her request because it was her life and I respected that. This was a hard secret to keep, however.

I received a message at 9 a.m. January 27,2021 from her younger brother, who is also a friend:

📌 Got a call from Pam’s hospice nurse at 12:30 this AM. Went there with my brother and Pam passed with us at her side at 1:34AM. Along with sadness there was grace and peace. Thanks for your prayers.📌

She told me a couple of months after diagnosis and initial treatment or surgeries. You see, she lived in the same apartment building as my mother, a floor below. My mother adored her and she saw my mother and stepfather in the building this one day and they were understandably upset and she wanted me to hear it from her that glioblastoma had taken up residence in her body.

I told her it was an improvement because she never told me she had breast cancer until she was completely finish treatment and we used the same surgeon. Kind of a weird thing to laugh about but we did laugh about it. Because the one thing you know about her is she has always been fiercely independent and very strong.

The day she told me I told her I was loaning my mother to her and she laughed and said “only if I can give her back.”

Glioblastomas are horrible and relentless and she fought this bravely, all in, and with humor, even.

We connected fairly often during these past couple of years of her life when she was able and we shared many laughs over growing up and the adulthood we didn’t reckon for and the fact that I had given her logistical custody of my mother. We used to giggle and she loved my mother as much as my mother loved her.

But Pam was never one that wanted to sit still and have people feel sorry for her so I respected her privacy and quest for independence at this final stage in her life since I found out. She worked as long as she could and then like many others got shut off from life and people due to COVID-19 .

When she told me what was going on we kept making plans for her to come out and spend some time with us, but then it just never happened. It was either radiation or the effects of the chemo or the MRIs. And then COVID-19 happened and we couldn’t see each other.

She’s been very brave and very stoic and I just can’t believe we’re here. I can’t believe I have to talk about her in the past tense. We had some amazing conversations these last almost two years of her life I feel very lucky and blessed that I had the time.

Pam worked until she couldn’t, her career was very important to her.

I always knew she was on borrowed time because I asked my oncologist to be straight with me about her cancer. He shook his head and said she will be fine for a while, and then it will move fast, that it was very aggressive.

We went to junior high and high school together. I came to our prep school for high school before her and I remember when she decided she wanted to try to come to this school as well. I remember I was talking to her on the phone sitting on my mother’s bed in my parent’s bedroom looking up at the canopy on her Chippendale bed.

She came to our prep school and immediately fit in. She had a gift for making people comfortable and she was also so funny at times.

High school was many adventures and many trips to her parents house in Margate, NJ. There was even the time we were driving down a local road and she was driving her dad’s car and we were almost out of gas. I don’t even remember why we were out that night we had originally been hanging out in her family room. And as far as summer highlights she was the one who introduced me to the Anchorage in Somers Point. I still hate beer but I loved the Anchorage.

I will note like most teenage girls and young adults we did argue at times. I never liked it because I loved Pam. I will also note that she had one of my favorite bedrooms when we were growing up. It wasn’t kid-like and it was so feminine and pretty.

When we all went off to college, I don’t think I would’ve made it through freshman year without a lot of late night phone calls to Pam from Ohio where I was, to Geneva, New York where she was. And I remember going to visit her one weekend with another friend… and losing my turnpike ticket out the car window and having to pay the entire stretch of the highway.

Between college and middle-age, there was a stretch of time where we didn’t really see much of each other except for occasionally bumping into each other at a party or a reunion.

But then we reconnected, and stayed in touch and saw each other. She was at my wedding, and she was one of the people we managed to keep the surprise aspect with. So she walked in thinking it was a Christmas party, seeing me in a wedding dress and marched up to me and laughed, wagged a finger at me, and said “I knew it!”

This past summer when there were the riots in Philadelphia, I hadn’t had the news on so I didn’t know until the next morning what happened in Philadelphia that hellish night when I turned my cell phone on and Pam had texted me “is your mom OK?”.

That was May 30, 2020.

She then messaged me that the city was on fire and that the rioters and looters were in their neighborhood but they were OK and she was pretty scared. She’s the one that told me that 17th and Walnut in Philadelphia was basically burned to the ground. She remarked at the time that it started as a basic protest and then turned bad because other people appeared on the scene. She then admitted to me that she was scared although they were safe, and that this whole thing that was happening then in Philadelphia was insane.

What did Pam do next? She went on her walker with her health companion up to my mother’s apartment to make sure my mother and stepfather were ok. That was quintessential Pam.

Why am I telling you all of these things? Because I want everyone to know and remember her for the awesome woman she was. An outstanding professional career and personally one of the best people a lot of us have ever known. She always kept it real and I am grateful to have known her. I will always hold her in my heart, and I will miss her.

Pam loved to travel so I imagine her on a COVID-19 free trip to Paris or some exotic tropical paradise right now.

May her memory be a blessing and may we always hold her in our hearts. But this is a loss that is really hard for me.

We had breast cancer not that far apart from one and other. We had the same surgeon whom we both adored, Dahlia Sataloff at Penn. I have written about her over the years. I was still a patient but out a couple/few years when Pam had her surgery. And she literally didn’t tell me until like a year after she finished treatment and when she did it was in a blasé “oh by the way” manner. But she didn’t want fuss, she just wanted to git r’ done so to speak.

I have cried when no one is watching for a couple of days. I have also been as angry as hell. I wasn’t going to write about this, then decided I should. I need to process this and set it free.

Here comes all of the survivors’ guilt and mixed emotions. Not only have I lost someone who literally knew me before I had my period or even had breasts, we had the same surgeon, did our treatment, and yet a truly horrible cancer came and took her away.

And I am still here. I thank the good lord above and modern medicine, yet this screws with your head. The cancer coward in every survivor is happy to still be standing, yet a tiny voice sometimes wonders why her, why them, why not me?

And I have to push through these feelings and I know I do, but today I am still tired. 2020 was a brutal year for all of us with the COVID-19 of it all, and 2021 seems to be testing us as well.

This will be my second virtual funeral this month. Right at the New Year we said goodbye to another high school friend, Tiger. To kidney cancer. I feel like methuselah and I am 56.

God never gives us more than we can handle, this is very true. But I am over this empty hole inside me that feels like a giant chasm for a couple of days called grief and loss.

I have been going back to my breast cancer treatment days and have spent the past couple of days being completely and utterly selfish and trying to do things for myself. I ordered a couple of things for my garden. In the old days I might’ve gone to get my hair done or get a manicure but it’s COVID-19 and I haven’t had my shot yet.

I hope my friends are in heaven having a glass of wine together. They both knew each other and both loved Paris, so maybe they are in the heavenly Paris. That’s a nice visual in my mind’s eye so I am going to stick with that.

I apologize for being a Debbie Downer with this post, but for almost 10 years now I have kept it real here.

Don’t squander life. Live it and celebrate the everyday joys and moments.

Pax.

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cancer doesn’t stop for covid19 or the holidays

Today I made the drive down to Penn Medicine in Radnor. Yesterday was my last oncology appointment of 2020 and today I went in for my flu shot in the infusion suites. I have gotten it in the chemo lounge every year since I was diagnosed. Weird place to feel like a safe place for shots for me, but it just is.

First of all, I have to mention how beautiful the whole huge oncology area is. Chemo suites and infusion suites that are new and clean lined and bright even on a dismal dreary day like today.

After I checked in I walked over to my designated waiting area. I met a woman and her sister. They were waiting for a blood transfusion. You see, the woman has metastatic breast cancer and is in treatment but needed a boost from a transfusion. She was scared.

This lovely lady had come to Penn Medicine after a less than stellar experience at another hospital. It gave me pause. Breast cancer doesn’t stop for COVID19 or Christmas. No cancer does.

I smiled at the woman and told her it would be all right today. I felt that it would be. I really hope it was. She’s a lovely woman with the loveliest face. She was peaceful and hopeful and I was struck by how nerve wracking it has to be especially in 2020 to deal with treatment.

Cancer doesn’t stop for anything. So it made me think about all those people bitching about having to wear masks and socially distance because of COVID19. And to them I say get over yourselves. We’re all a long time dead. And if you lived with a compromised immune system YOU WOULD NEVER EVER COMPLAIN.

I live with a compromised immune system. So does my mother and my stepfather. So do many, many of my friends and family.

So to all of you selfish whiners out there I have a simple message: mask up and do your part and quit whining. 2020 has been hard on ALL of us. Emotionally, physically, philosophically, financially.

Recently I lost a growing up friend to a horrible renal cancer. And fortunately his family was able to see him a couple of weeks before he passed but his final months were not fun. Because of COVID19 a lot of his extensive in-patient treatment was 100% isolation from all friends and family. Not even his wife could see him. Because of COVID19 we could call and text him but none of his friends were able to see him at all.

I have another friend whose husband is battling a brain tumor. This year. Now. And had a stroke. No one can see him either. Except his wife, my friend. But because of COVID19, we can only offer support virtually and from afar.

So my perspective is very, very different. I am really sorry you can’t party like it’s 1999, but think of others. Please do your part and don’t be selfish.

#MaskUp and be safe.

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the cost of living…and dealing with healthcare costs

This morning I happened upon a report about women being charged and overcharged for mammograms. It was on CBS News this morning and it’s not a morning program I generally watch. But given my nine year journey with medical bills along with being a cancer survivor it resonated.

If it resonates with you, they are looking for women who have had problems getting mammograms covered and other kinds of charges to email Healthcosts@cbsnews.com

I wrote them to share my thoughts and say thank you. In part, what I said was:

I don’t normally watch CBS News in the morning, but it happened to be on, so I watched it this morning. I’ve watched with great interest you’re a piece about how expensive it is to get testing done that is breast related.

I am a nine year survivor of breast cancer. When I was initially diagnosed I had Aetna HMO. I had to fight for everything. I was exhausted after the surgery and into the treatment, but I had to be my own advocate or the bills would have been even more expensive.

I have an Independence Blue Cross PPO now. But even with good insurance all those tests I have to have as still an active cancer patient can be ridiculously expensive. For now, however, it seems my mammograms are covered. Other tests like MRIs have expensive co-pays.

This year I had a repeat dance twice with a second cancer which is skin cancer. Squamous cell and basal cell both requiring Mohs surgeries. One of the surgeries required a skin graft or I would’ve literally had a hole in my nose. The way insurance is so oddly structured along with hospitals payment systems, this year alone I have had over $5000 in overages that I have to pay off with a monthly payment plan.

I am grateful that both my hospital system and my insurance company are fairly easy to work with. But I know that’s the exception rather than the rule as compared to what a lot of women deal with.

I had knee surgery December 26 last year, as soon as 2020 hit the per visit for physical therapy went from $70 a visit to $100 a visit. I needed physical therapy twice a week. So I spent a lot of money on physical therapy, and that is one thing that I don’t like about my plan is physical therapy is expensive. I sucked it up and paid it because I needed the physical therapy.

When I was initially diagnosed with breast cancer it was pre-Affordable Care Act. I was self-pay on my health insurance because my employer at the time only offered himself health insurance not his employees.

Once the Affordable Care Act came in to play, I was one of the millions of people Aetna dumped in Pennsylvania. Fortunately for me the ACA meant I could get better insurance and I could go back to Independence Blue Cross Philadelphia or IBX as we know it around here. But then again, once Obamacare came into play that was pretty much all that was offered if you were self-pay in Pennsylvania.

Not to be political, but since Trump became president my healthcare costs have gone up. And every year I hold my breath and stress out because as someone who literally lives with pre-existing conditions, I am terrified of what will happen in the insurance industry.

In 2020 there have been some months as a self-employed person where I felt like I was working to pay my health insurance. But I know I am lucky because I was able to do it.

I think the problem is there is a big disparity between the hospital systems and the insurance companies. And where it gets broken down in a lot of cases is the hospitals don’t actually make that much money off of the insurance companies, but the insurance companies need to be more consistently regulated or regulated in the first place so that women can get the breast health test they need covered, and doctors get paid. Because this isn’t just 2020 where you have to fight to get stuff done in a lot of cases.

And a lot of people don’t have the luxury of having insurance companies and hospital systems that work with them. I am lucky that I can handle it even if I have to break things down into a payment plan. But it just sometimes is overwhelming to deal with medical costs and insurance.

Women do have to learn to be better advocates for themselves. They have to not be afraid to be pushy and when you’re going through cancer treatment that can be hard because you’re just tired.

When I used to have problems dealing with Aetna I found one of the most effective ways of dealing with Aetna was Twitter. They don’t like negativity on Twitter it seems.

It really shouldn’t be so punitive financially to try to get the health coverage and treatment you need as a woman.

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