#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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#tbt and thoughts seeing an old photo from my breast cancer journey

Dear Readers: the backstory is that photo was posted on Facebook yesterday like an FBI Wanted Poster in the post office. If you have followed this blog, you know I haven’t even here posted tons of photos of myself. I just haven’t. This photo above is from some part of 2011 and the beginning of my journey with breast cancer. Either before my surgery, or before I started radiation. It may have even appeared on this blog.

The person who posted it undoubtedly is unhappy with my opinions on their craziness about COVID-19 and wearing masks, and masks on kids in our schools. They are literally very public with their feelings speaking at public meetings, etc. Otherwise quite frankly, I wouldn’t know they existed on this planet.

I don’t know why they chose this photo in particular. 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 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.

I remember the first year dealing with breast cancer very vividly. You had a good days and you had bad days. You tried not to let people see the bad days because sometimes they either couldn’t handle it or they wanted to fix everything for you, and you really have to come through it yourself even if you need support.

Every woman’s breast cancer journey is intensely personal because as I have said over the past decade, breast cancer is a disease with a very public face that is at the same time this odd duality of also being a very personal/private journey. The face in the photo above was not the face of confidence, that was a face of uncertainty because it is all so new the first year.

And that’s O.K. You work your breast cancer 12-step program and take things day by day. You celebrate the little and large victories, your are honest when a day is just crappy.

I am proud of the last decade and grateful to be alive. So this woman? She doesn’t get to take that from me or my first amendment rights. To follow in italics is the post from my regular blog so you have the context.

Thanks for being here with me and here is what I wrote:

📝Hi Alicia! I am guessing you don’t like yesterday’s post? All based on public information and I am actually allowed to express my opinions by virtue of the same First Amendment that allows you to spew hatred at Tredyffrin Easttown School Board meeting, correct?

So the photo you posted? Well it is 10 yrs old and I am fairly certain it was either before I had breast cancer surgery, or after I had surgery and was getting ready or just starting radiation treatment. Are you happy now that you posted the photo? Like I am wanted for some crime against humanity? Lots of people know me, dear. Some of those people actually alerted me to your public wanted poster on your Facebook profile.

You might not like what I have had to say about you or your anti-masker, anti-vaxxer amigos, but I am entitled to my opinions like anyone else. You put yourself out there in public forums where you have no expectation of privacy, you don’t really do so well with your privacy settings on social media, and you chose to try a Go Fund Me for your lawsuit for an injunction against Tredyffrin Easttown School District/School Board that was covered by the media. YOU madam, raised your own profile. No one else. I am not breaking new ground here. You have created your own political theater have you not?

That photo illustrates why I live immunocompromised for life… because I had breast cancer and received treatment and just finished up 10 years of breast cancer medication.

So I have zero respect for someone like you who raises hell in school board meetings with your nonsense. Sure you have your first amendment right to your opinions, but no law says I or anyone else has to agree with you and the first amendment is not subjective is it? Or do you think it is?

411: we have been living with a global pandemic. Not the common cold. Masks won’t hurt people for a little while. No one likes to wear them, but if we do our part because that is how this will all get under control and eventually life will return to normal. Of course the flip side is will life return to normal? Ask any cancer survivor and we will tell you we have had to get used to a new normal. Maybe you do too?

Bless your heart, thanks for the photo memory, and the very real and valid reasons people like me think people like you are just wrong.📝

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milestones: the last dose of tamoxifen

It was just a little note in my calendar. But it’s a very big event. The note says “stop taking Tamoxifen after today.”

Ten years ago I started taking Tamoxifen. Prior to this, I took very little medicine. Mostly allergy medicine and ibuprofen or Tylenol. Sometimes antibiotics, and well back in the day, birth control pills. Taking a drug every day for 10 years hasn’t been fun, and there have been times over the course of a decade I seriously wished I didn’t have to take it. But I didn’t want to be one of those people that just suddenly took themselves off a breast cancer drug they were prescribed. And there have been times over the past decade when I have seen women comment in breast cancer chats that they’ve done just that.

I can honestly say that over the course of the past 10 years I was more scared to NOT be on tamoxifen, than to be taking it.

So here we are.

I have survived a decade on this drug and I am cancer free at present. Tamoxifen did it’s job and I’m not going to rehash all the issues I’ve experienced over a decade because this is the last day. The very last day.

I did it! I got through it!

How do I feel about this? I’m not sure is my short answer. I am so glad I am here 10 years later to tell you I can stop taking Tamoxifen, but part of me is also a little nervous. It’s kind of like going forward walking the tight rope without a net isn’t it? But if the drug has done it’s job, and buy all testing and examinations, it has done it’s job. So from my doctors’ lips to God’s ears, I will be fine.

I remember when my oncologist and I had the discussion about stopping Tamoxifen at the 10 year mark, it took me a while to comprehend that I didn’t taper off, I just stopped taking the meds.

I think I deserve a merit badge or at least a nice piece of jewelry for surviving 10 years of the stuff.

Well I am signing off for now. I just wanted to take a moment to also recognize this milestone in my breast cancer journey.

Be well dear readers and thanks for being here all of these years.

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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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