angel wings

I woke up in tears. Cancer took a very special woman yesterday. By profession she had been a hospice social worker. I do not even know where to go with this. I cried yesterday, I cried today.

We met over endangered rescue horses. It was when I first moved to Chester County. I met her the same time I met some other amazing women.

As we got to know each other I realized we had family in common, as in my family. One of her good friends was one of my favorite cousins. Her husband is also best friends with my cousin’s husband.

We also shared hunting for treasures at local antique places and I loved watching as she found treasures for their home and when we would each try to get to a favorite dealer first when the vintage Christmas ornaments came out in the because we loved a lot of the same vintage ornaments. And she liked sea creature glass ornaments like another friend of mine.

We shared something else sadly, Fucking breast cancer. I am lucky I only had stage 2. Mary lived with stage 4. She was one of the bravest.

Don’t I feel awful that I was complaining about being all upset and anxious about a diagnostic mammogram last week? Yes, survivor’s guilt is real. And often brutal emotionally. Like today.

Mary, you endured and survived and I think you are, now were, amazing. I have now known the news since yesterday and honestly I am sitting here in tears and I know you wouldn’t want that. I am grateful for the time I knew you.

Heaven definitely has another angel.

RIP Mary.

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all clear heading into 8

I made it to year 8!

Eight years breast cancer free!!!

After a mountain of paperwork and a diagnostic mammogram the news is GREAT! NED is still my friend post mammogram. (NED = NO EVIDENCE OF DISEASE)

This year I came to the Fern Hill Campus of Chester County Hospital. They are Penn Medicine, so it’s nice to have options. What a nice facility!

This year I actually had conversations with people waiting. A lot of times people are so wound up in whatever that you can be in a crowded waiting room and no one speaks to one and other.

One woman was there with her daughter. Her daughter has survived with Stage 4 metastatic breast cancer for 16 years. That is an amazing accomplishment.

I ended up giving one lady a hug. I accidentally upset her when I went back to get changed after being told the results of the mammogram. I was crying. Happy tears but I was crying and it upset her and I could see that and I felt so badly.

I also met a woman who had worked on the tamoxifen drug years ago. That was pretty cool.

Next stop is I go in and visit with my oncologist, but at least I know my results of my mammogram today.

Lucky 8! I made it!

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at almost the eight year mark, the terror train makes a stop

I know, look at the pretty peony, right? Too bad my mood doesn’t match up today. I am almost at the eight year mark post breast cancer. And right or wrong, I am scared and anxious.

Saturday is June 1 and that’s the official eight year mark from when they cut invasive lobular breast cancer out of my left breast. I had what is known as a lumpectomy, which in reality is a partial mastectomy.

I opted not to have reconstructive surgery because I am not a plastic boob girl. I don’t regret that decision, but as the years have progressed the breast that had surgery has continued to shrink because the tissue is all dead after radiation, and age has taken my right breast a little south of where it used to be. So some days when I look in the mirror I feel really lopsided. It hurts to wear a bra with underwire so I look for bras with padding that can sort of fake the look of even breasts in clothes. Some days my self-body image takes a real beating.

Tomorrow I have to have a mammogram I haven’t had in a couple years. I’m not having a screening mammogram which is the normal in and out kind of mammogram. I am having a diagnostic mammogram. That means they do the whole mammogram and more. Could be an ultrasound as well. If I recall correctly, they also read it and they study it while you’re there. It makes for a very long couple of hours at a minimum.

This photo of me in a hospital gown was me years ago as this whole journey was beginning. Or the photo might’ve been before I started radiation post surgery. It’s been so long I just don’t remember now.

I’m like a whole other person since then. For the most part that’s a positive, but for the inner scared breast cancer patient part of me, I don’t know some days.

Having had breast cancer and treatment and tamoxifen have made me go from being the person who maybe went to the doctor once a year just to see her gynecologist to feeling like every time I turn around there’s another doctor’s appointment. Recently the appointments have been skin cancer related mostly, and that I can’t blame on breast cancer although it is another cancer diagnosis.

Post breast cancer I have osteopenia. I have also had a complete hysterectomy because even two years after radiation and into tamoxifen ovarian cysts and fibroids kept on growing.

Between the tamoxifen and the hysterectomy I was put into menopause in one fell swoop. Sometimes the hot flashes are brutal and then I go for a while where I really don’t have any. A lot of times the hot flashes are emotion driven, so as I get ready to start the next round of breast cancer related doctors appointments and testing the hot flashes have been brutal. Alcohol also affects them which really cramps being able to have a nice glass of rosé when I want it.

Another fun tamoxifen thing is I am growing cataracts. Yes, that can be a side effect. They’re not ripe enough to remove, but they are ripe enough that at night is my worst time with my eyes. I don’t really drive at night anymore.

I also have a slight degree of hypothyroidism. It’s a combination of genetics and partially frying my thyroid when I had radiation. This was something that a very savvy nurse practitioner caught with an annual physical almost a year ago. She had me do bloodwork and there it was in black-and-white and I have bloodwork pretty regularly so I don’t know why it wasn’t caught before, but it wasn’t.

Joint pain. I think that is a combination of age, arthritis, osteopenia, and tamoxifen. Lately it’s been brutal and that’s because of the variable weather and pressure situations because we’ve had so many thunderstorms and things like that. Barometric pressure plays a big part here as well. When the barometric pressure goes up and down I also get headaches. That has nothing to do with breast cancer that is something I inherited from my maternal grandmother.

And my all-time favorite side effect of tamoxifen are the damn mood swings. Sometimes they are pretty freaking bad and it is hard because you know realistically you are in your right mind that nothing is wrong yet the other part of your mind is totally going AWOL on you. I hate the mood swings. They are hard on me. They are hard on my family too.

As a matter of fact I think breast cancer is just hard on everyone.

So yeah I am not my usual more positive self today as I have tried to be and made the conscious decision to fight to be on this blog for the past eight years. But as I have told you all along, I was going to be honest with my readers about how I was feeling along the way. This is one of the times where I am at sixes and sevens for lack of a better description.

I need to get through tomorrow and then a bit of the cloud will lift. But you ask any breast cancer patient or survivor about what the few days before the mammograms are like. It’s just hard. Because you can be totally positive and think you’re totally fine and what happens is you just feel scared.

Yes I am scared. And no amount of positive thinking has ever been able to completely eradicate the scared feeling. Maybe once I reach the 10 year mark post breast cancer and forward I will feel differently but right now it’s like walking on egg shells and feeling like you’re going to cry.

Today I said to a friend of mine who is also a survivor that I feel like a giant pain in the ass sad sack. What she said to me is that she didn’t think I was being a sad sack and sometimes our family and friends and life partners don’t get how this all makes us feel but women who have been through this always get how you’re feeling.

So once again I am exercising my breast cancer demons by writing it out. I’m thinking that maybe I need to check in on my blog a little more often and write a little more often. My husband said to me today I can’t continue to bottle the stuff up and he’s right. But after almost 8 years of dealing with this stuff, I kind of wish I had it down to more of a routine.

But as I said when I started this journey what we used to consider our normal becomes a completely new normal that is constantly re-defined as we progress. So I guess I am just dealing with another stage of this.

It’s time for me to climb back up the mountain and get my act together. I hope those of you who are patients and survivors who read this post aren’t put off by it. I’m just trying to be honest. And when you’re talking about the stuff you know when you’re honest about how breast cancer makes a woman feel, it’s literally warts and all. It’s not pink and fluffy and cute T-shirts, it’s just hard some days. Even if you are completely clear of cancer to the best of your knowledge.

But I have a good care team. And they have never let me astray. It’s just hard. And what is also hard lately is seeing women whom I don’t know crowdsourcing breast cancer treatment in support groups.

As much as I have disliked being on tamoxifen and having to have treatment, I’ve listened to my doctors’ recommendations. They are the MEDICAL experts in this field. Not other breast cancer patients and survivors. Breast cancer patients and survivors are the experts in the whole living with this crap day to day part of it. And every cancer is different. And when you’re honest about how you are feeling it can scare people.

Breast cancer patients and new survivors can be very impressionable. Which is why I have kept any negativity to a minimum by proportion when I write on this blog. I don’t want to scare people. This is just my experience. It’s not necessarily going to be yours or anyone else’s. But sometimes I have to get what I’m feeling out on paper so to speak. I need to release it. Because then I can get back to a better frame of mind.

So I’m going to take a big deep breath and exhale now and get on with my day. Tomorrow I will be ready for my diagnostic mammogram.

I will of course let all of you know how it turns out. My doctors and I have no reason to think it won’t be fine. It’s just getting past that little dark spot in the back of my mind that’s the hard part right now.

Thanks for allowing this random stream of consciousness.

Pax

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tamoxifen and other breast cancer crowd-sourcing.

Image result for pink boudoir photos

I wasn’t planning on writing a post on this blog today but I think I must.  A breast cancer group I belong to had a post from someone who was crowd-sourcing opinions on Tamoxifen. Specifically, she was considering not taking it because it might affect her sex life.

Honey? News flash? You have or have had breast cancer and there are some new normals at least in the short term.

But to consider NOT taking a drug which is designed to reduce your risk of recurrence post-surgery and post-treatment because you fear for your sex life?

O.M.G. I am aghast. Sorry but I am.

I am almost in year 8 of 10 on Tamoxifen.

The only halt to one’s sex life is the one you impose personally. Breast cancer has a lot of inconveniences.  You adjust.  Why do you adjust? BECAUSE YOU ARE ALIVE!

Tamoxifen induces chemical menopause yes, but, that doesn’t mean your life as a vital woman is ending. It’s an adjustment. It’s lubricants needed….like most women going through menopause.

I have had hot flashes, joint pain, some insomnia, mood swings, weight gain, fatigue (which ends up was more thyroid driven which got partially fried during radiation so I am on a generic synthroid) BUT I am going to be blunt here: you’re a long time dead.

And I would do it all over again. I chose to reduce my risk of recurrence post-radiation. If I hadn’t chosen to reduce my risk of recurrence I would be playing Russian Roulette with my life. No thank you.

And NOT EVERYONE HAS SIDE EFFECTS. Truly. If someone is going to base NOT taking Tamoxifen on their sex life, well, I think that’s dumb.

Again, sorry, not trying to be unfeeling but ladies, you need to count your blessings, starting with being alive.

Your body, ultimately your choice but honey, I turn 55 tomorrow and I am not my ideal weight but I am loving my life. AND I WILL SAY IT AGAIN: I AM ALIVE.  This time in 2011 when I started this blog I did not know for sure I would be. I wanted to be, but hell I did not know. I had not had surgery or treatment.

And I did not crowd-source Tamoxifen. I went to the professionals. My doctors and my nurse navigator back then.  Seriously, May 16, 2011 was around the first time I had to think about Tamoxifen.

Tamoxifen is still one of the most effective cancer drugs out there.  Do I wish I never had to take it some days? Hell yes, like last night when my joints felt like they were on fire.  Or a couple of weeks ago when one of those lovely occasional waves of Tamoxifen mood swings struck.  A lot of people won’t talk about it or think you are weird if you do. I have struggled with this from time to time since radiation and all through the years of Tamoxifen with days that are just down.

I have to say it out loud sometimes:  I have days where I am just down. No logical reason to be down, it just is. I have had a few recently. They are awful. But I get through them.

A friend of mine who is a fellow survivor said to me recently:

I feel like they could do a better job of treating the whole person. I’m on Tamoxifen too and some days the sadness is like a rogue wave. I think people don’t like to hear about this stuff, because it makes you “weak.” The world applauds when you’re smiling and strong. Most days I have to push myself.

Yup. And I know people sometimes have a hard time reading blog posts I have written here that aren’t all cheerleader perfect. News flash, I was never a cheerleader.

Breast Cancer is a pain in the ass.  Any cancer is a pain in the ass. But seriously? Chose to live your best life.  And if you need reassurance, by all means seek it out.  But do not crowd-source your treatment. That is between you and your healthcare team. We can all as survivors tell you how we felt during different times, but every cancer is different.

You have doctors. Talk to them. Get your game plan on with them. If you have to add a therapist, do it.  No one has ever been harmed by a little mental tune-up.  But get real because breast cancer is as real and as ugly as it gets.  One day at a time. That’s how you do it.

I will close with this article a friend pointed out.  It’s pretty raw but pretty damn amazing.

Happy almost birthday to me.  Happy to be here and to be able to be opinionated. I am not and never will be Pollyanna. But I am alive. And I love my life. So there.

The New Yorker: Personal History
What Cancer Takes Away
When I got sick, I warned my friends: Don’t try to make me stop thinking about death.
By Anne BoyerApril 8, 2019

Before I got sick, I’d been making plans for a place for public weeping, hoping to install in major cities a temple where anyone who needed it could get together to cry in good company and with the proper equipment. It would be a precisely imagined architecture of sadness: gargoyles made of night sweat, moldings made of longest minutes, support beams made of I-can’t-go-on-I-must-go-on…..For months, my body’s sadness disregarded my mind’s attempts to convince me that I was O.K.

…..No one knows you have cancer until you tell them…..The cancer pavilion is a cruel democracy of appearance….The boundaries of our bodies break…..Every movie I watch now is a movie about an entire cast of people who seem not to have cancer, or, at least, this seems to me to be the plot….I am marked by cancer, and I can’t quite remember what the markers are that mark us as who we are when we are not being marked by something else.

….People with breast cancer are supposed to be ourselves as we were before, but also better and stronger and at the same time heart-wrenchingly worse. We are supposed to keep our unhappiness to ourselves but donate our courage to everyone. We are supposed to….as in “Sex and the City,” stand up with Samantha in the ballroom and throw off our wigs while a crowd of banqueting women and men roars with approval….We are supposed to be legible as patients while navigating hospitals and getting treatment, and illegible as our actual, sick selves while going to work and taking care of others. Our actual selves must now wear the false heroics of disease: every patient a celebrity survivor, smiling before the surgery and smiling after it, too. We are supposed to be feisty, sexy, snarky women, or girls, or ladies, or whatever……

 

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hating bras and some general bitching.

One of the things that I hate the most post breast cancer is finding freaking bras that fit. I did not have breast reconstruction surgery, so I’m lopsided.

And as the years go by and the breast tissue adjusts and settles I get more lopsided.

I can’t wear an underwire bra as they hurt. One breast is one cup size and the other breast is about half of a cup size smaller. Tamoxifen has made me plus size and it’s just hard all the way around to find bras that fit.

I have tried expensive bras, moderately priced bras and cheap bras. Ironically, the ones that fit the best for the most part are the most inexpensive.

I don’t regret not having breast reconstruction, plastic surgery is not my gig, but I just wish someone could design a bra for us that fit. It shouldn’t be “well if you got your breasts fixed then you could wear bras again.”

Thanks no, I choose not to have flotation devices surgically attached to my body. Why can’t bra manufacturers make better bras?

Lately I have also been going through one of my fighting with my own self-image stages. I don’t feel attractive, I don’t feel pretty. It happens. And it generally happens when my sleep has been off, and it has. I am sleeping much better than when I first went on Tamoxifen and before my subsequent hysterectomy, but sometimes there are just times when sleeping sucks.

And I am also going through a phase where I have a lot of joint pain. It’s not Lyme disease, if I had to be honest I would say there is probably a little bit of arthritis mixed in with the Tamoxifen joint pain.

Almost 8 years post breast cancer and I am doing very well for the most part. I’m alive for starters. And I have a good quality of life. But sometimes I am just tired. I don’t mean to sound ungrateful, because I’m not. My life is full of blessings.

I wrote an article today about gardening and how gardening teaches you patience if you let it. Patience is a virtue I sometimes have in very short supply.

When I first started this blog eight years ago I promised I would be honest with my readers. So all along this journey I have showed you the good the bad and the ugly. Maybe some of you think it’s ridiculous that I am bitching about bras not fitting, but it is just one of those things. And today is one of those days where I think Quasimodo would have an easier time getting a bra fitted for him as the hunchback of Notre Dame, versus me as a breast cancer survivor.

I’m also getting a little people weary. What I think I need to do, but I know I don’t like to do is search for a little more “me time”. I don’t like doing that because it feels selfish. But sometimes you just have to do what is best for you. I can’t be all things to all people. And that is a very female thing. We are all supposed to be Wonder Woman on this bus, only we’re human.

Thanks for stopping by.

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things not to do with this blogger

Image result for oh you want to have an opinion on my opinion

So let’s see…apparently Juice Plus still cures cancer? WOW! (Think of all the money I could have saved on surgery and treatment, right?)

I wrote a post in 2016 about someone I thought was a bit sleazy trying to prey on someone vulnerable…and sell them Juice Plus. Which was my right and my opinion.

I also don’t see the reports from my oncologist or anyone else’s oncologist that Juice Plus cures cancer.

Let’s start with Juice Plus and break it down.  It is a whole food based SUPPLEMENT.  It is not a replacement for whole foods or medicine. It is NOT proven to cure cancer.

Proper oncology based nutritionists  are nutritionists trained for cancer  and are quite specific in their discipline.  I know because I got one when I picked my surgeon, oncologist, etc.  They were VERY specific – they explained why they wanted me off oral supplements and vitamins through the end of treatment.

Yes and they want you getting whole food sources BUT they want it naturally occurring as in the food you are eating.

I had pages and pages of stuff to eat, what was a super food, what to avoid.  They wanted patients on foods that gave us naturally occurring what we needed NOT thru an engineered supplement.

Don’t believe me? How about what Memorial Sloan Kettering says?

MSK

Or what the University of Pennsylvania says in OncoLink:

juice plus scam

So yeah, I don’t know about you, but the people who have given me five years cancer free mmm might be the one I would listen to.  If not, there is this terrific article on a website called  MLM Watch, The Skeptical Guide to Multilevel Marketing.

Now an update to this post is since 2016 women I know were selling Juice Plus.  I felt obligated to try the products and settled on the fruit and vegetable gummy supplements.  I paid for them for over a year. I do not think they did a damn thing. They also didn’t know that soy was in the shake mixes until I told them.

I need to avoid soy. It is a phytoestrogen. I had a hormone driven cancer.  I have other friends who need to avoid soy because they are allergic to it. NOT EVERYONE LOVES OR WANTS TO INGEST SOY!

I talk to my doctors all of the time about this stuff and they still say to me the best way to get vitamins, mineral, good stuff is naturally as in naturally occurring as in the food you are eating.

Now here we are essentially three years after I initially wrote the post and I have new keyboard critics rolling up to tell me how to be.

First there was the woman who told me I was an awful and angry person because I guess in her mind I slandered Juice Plus and other direct marketing pyramid sales gigs.

Then today there was the woman who as a fellow survivor essentially wanted me to hear HER opinion but she was far too busy to hear anything I might say in return.

Umm honey? Life doesn’t work that way and well it is my blog and I still think you are wrong.

And as for Juice Plus, in the end there are no magic bullets. And the fact that so many of the people who sell it basically say how it helps cure cancer and helps prevent cancer when there is nothing legitimate to back it up and they insist a supplement is in fact not a supplement because it’s a marketing ploy? Well, yeah, I still find all of that troubling.

These are my opinions based on my own personal research. Do your own before you give money, buy products, or take the advice of a non-medical/oncology professional.

If my doctors weren’t so careful with me, I never would have known about the fact radiation treatment gave me hypothyroidism.  If my doctors weren’t so careful with me, I might not have found out I had squamous cell skin cancer.

I work with my doctors and I believe in a combination of eastern and western medical practices.  What I don’t believe so much in are direct marketing programs like Juice Plus. I will not apologize for that.

None of you have to read this blog.  But some of you seem to be missing the point that it is in the end my blog and my breast cancer journey.

Peace out.

Image result for keyboard critics

 

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merry christmas eve from survivorland

Cancer free.

Still.

Seven and a half years. Trust me I count my blessings. I am one of the lucky ones.

I have friends who live with MBC, otherwise known as Metastatic Breast Cancer. These women are my heroes, my inspiration. They live their lives to the fullest, and show the rest of us what it is to survive. They are amazing and wonderful and strong. Even when treatment leaves them sapped of energy on occasion, they rise.

It is still a complicated relationship that I have with breast cancer. Some days it’s all warrior girl “F cancer”, and some days a lot more vulnerable. Cancer is something you can move past if you are so blessed, but it doesn’t necessarily move past you. There is that emotional component. And it lurks, playing peek a boo when it so chooses.

Yesterday I met another survivor. She is amazing and positive and strong and wonderful and I look forward to getting to know her better. She was like a bright Christmas light. When you meet cool people like this, you understand the magic of Christmas.

I haven’t written in a while. I don’t like to post unless I have something to say. Today it’s simply there is a higher power out there and if you are struggling, please have faith. Enjoy the magic of Christmas.

Also today I got a note:

Ok wow, seven and a half years later, and it makes me so happy that this blog is of value and resonates in a positive way with people. I just write. The following is organic. I am just a regular person, so it is so flattering when other sites include me. Follow this link for BreastCancerPodcast.com. You can find my blog in the personal website section of their site. Here is what they said:

It’s kind of strange to me every time someone writes about me writing about my breast cancer journey. A weird out of body experience as I view my words through someone else’s eyes.

To get this note on Christmas Eve is like getting an extra Christmas present. I have only skimmed the surface of this site, but I think it is kind of neat and draws a bunch of resources together. It is NOT a substitute for your breast cancer medical care team, but even if my blog wasn’t mentioned, I would take a peek at what they are doing.

As another year draws to a close, I will take a moment to wish all of you and your loved ones a Merry Christmas and Happy New Year. May you be touched by all of the joy and magic the season has to offer.

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