the “pinktober” lament: breast cancer isn’t pink and fluffy

#PinkPower ? #PinkTober ? #IfightTODAY ?

Damn. It’s October 1st.

Freaking #BreastCancerAwarenessMonth is here again in all it’s glorious hues of Pepto Bismol pinkness.

I hate it. I hate the month of October now. Every time you turn on the TV or walk into a grocery store or go anywhere it’s all about pink. I don’t even like pink as a color much anymore.

I’m one of the lucky ones as I am an eight year survivor of breast cancer. But some days it has been a fight. And recently it has been a fight again as I have developed slight lymphedema in my left foot eight years into Tamoxifen and post treatment and surgery.

I also have balance issues which I think can be attributed as well to living post breast cancer and specifically wondering when people will talk about Tamoxifen toxicity?

I also am growing cataracts directly attributable to Tamoxifen. At least when they finally ripen I can have them removed.

And the hot flashes over the past few months? They have been brutal.

Please understand I am not deliberately trying to be negative but I’m just trying to prove that the reality of living with breast cancer or living with having had breast cancer isn’t fairies and rainbows and pink flowers and pink balloons and pink T-shirts and pink plastic bracelets it’s a very real thing.

I do agree, however, with Hoda Kotb from The Today Show that breast cancer can be a new beginning. I have said it since the beginning that having breast cancer freed me to be the person I actually want to be. It freed me to a better life. And that’s for a very simple reason: when you face your own mortality you realize there’s a lot more to life than you have been experiencing. You cease to be afraid to take chances and expand your mind, life, horizons.

But every time PinkTober comes around it triggers something in me. All the constant talk of breast cancer just makes me anxious. And when you see the commercialization of PinkTober it makes me honestly upset as well.

Today is one of those days that I don’t feel pink pretty or light and fluffy for having survived breast cancer for eight years. I feel a little tired, unattractive and unlovely. I look in the mirror and I see uneven breasts that get more pronounced as time goes by because The left breast which had a good chunk of it removed and then was completely irradiated is dead tissue for the most part and it continues to shrink.

Yet I know in my heart of hearts that reconstructive surgery wasn’t for me. I think there are more than enough problems with fake boobs.

I have friends who live with stage four metastatic breast cancer. I don’t think they see it as pink and fluffy either. A woman I know who isn’t even a friend has just been diagnosed with breast cancer and is facing a double mastectomy. She has two children and a family.

This is not something I would literally wish on my worst enemy or even people I don’t care for.

But I think the pink of it all during the month of October isn’t empowering I find it diminishing. And I think it’s because of all the commercialization of PinkTober.

I am all for lifting women up and supporting women dealing with this disease. You get your diagnosis and you are a lifetime member of a sorority you didn’t sign up for. It’s a lot. It can be overwhelming it can make you feel powerless. But I don’t think a pink T-shirt is going to make me take my power back on days when I’m feeling a little down. And I’m someone who is an eight year survivor saying that!

I am all for people being supportive of those of us who are newly diagnosed, going through treatment, about to have surgery, and who are survivors.

But I’m not a goddamn pink powder puff girl. I’m a grown ass woman and so are all of you out there dealing with this disease.

During the month of PinkTober, do something nice for yourself. Pay it forward with legitimate charities and volunteer your time or make a donation to them.

But save your money on things like pink cupcakes, pink T-shirts, pink plastic bracelets, pink hats, and all the pink products that the manufacturers want you to buy in the grocery store during October. If you want to give back do it in a way that is more meaningful and where your money will actually mean something. PinkTober products are a marketing scam for corporate America as much as anything else.

Charities I like are still:

BreastCancer.org

Living Beyond Breast Cancer

Unite for Her

So #IfightTODAY I ask you people to look beyond the PINK. Survivors are all different we are not a homogenous glob of pinkness.

Am I a survivor? Oh hell yes. And I made my choice to be positive throughout my treatment. It has made a huge difference in my life. And I am not being negative now and I don’t want people to think that — I am just being a realist and there are so many of us that dread #PinkTober.

Eight years later I still think we can lift breast cancer patients up without coating them in PINK.

That is all.

Posted in breast cancer | Tagged , , , ,

the club no woman wishes on anyone.

Image result for pink breast cancer

Breast Cancer is a club you wish on no woman.  Just heard of someone else who said they have received such a diagnosis.

Every time I hear of someone else having it I am instantly transported back 8 years. Every. Damn. Time.

And I am one of the lucky ones.

And being lucky means sometimes feeling guilty. It doesn’t have to make sense, it just is.

It’s September.  Soon it will be October. October means hideous Pinktober will return.  And once again those of us who have had breast cancer or are currently being treated will remind everyone and practically shout from the rooftops that there is nothing freaking pink and fluffy about breast cancer.

Nothing.

But I will tell y’all again that my making the decision to remain as positive as possible saved my life I feel.

When I was diagnosed I discovered at the time I lived in a cancer cluster.  I did not imagine it. But now, 8 years later I can’t find the data on the Internet.  What I have stumbled across are the lovely statistics that made the Commonwealth of Pennsylvania #8 in cancer deaths nationwide in 2016….don’t know what 2019 is like but hey we live in a world where agencies like the Environmental Protection Agency have kind of been gutted.

But we can’t stop living.  Our best defense is being informed.  If you think something is wrong, don’t ignore it. I learned that lesson the hard way.

When I first found my lump, I was busy at work.  I did have a mammogram scheduled but something came up at work and I was unable to keep that appointment. I didn’t get that mammogram until months later.  I should have insisted that I needed to keep my original mammogram date.  I really, really got lucky.

And then there is that annoying emotional component of breast cancer. Some of us are alone when we get our diagnosis, some of us are parents and step parents to young children, and some of us are just embarking on the rest of our lives and quite young. You get a diagnosis and your head spins the first time. You go through surgery, treatment, post-treatment and your head spins more on occasion. Every mammogram and blood test and gynecologist visit the rest of your life will always give you pause, even if you are positive. Because as breast cancer survivors we always live with the secret fear of “will it come back?” We live with medical histories that are now stamped “cancer”.

The ability to write about my breast cancer all these years has been a saving grace. It was and is a comfort. Because I have had the ability to do this, write about my journey with breast cancer, it has been an extremely productive coping mechanism for me. Being able to get it out and write it down kept me moving forward. And when I have a down day, I can still look back to see how far I have come.

I am proud of myself for being able to share this journey on a blog and so are the people who love me.

As a woman who has had breast cancer I can’t read about the disease every day. I can’t even talk about it every day. Still. 8 years later.  I can’t go to funerals and won’t unless I have to. That is where my coping wheels still come off.

I will tell you people are definitely weird when it comes to dishing cancer. Some people are super secret about it, some people are living it out loud. I was, and continue to be open about it. I do that partially out of respect for the kind and caring women I know who were open about the disease when I received my diagnosis. They wanted me to feel less alone and helped demystify the terror that comes with a diagnosis. It is the worst kind of scary unknown. Because of these women who shared with me I was able to get through and remain positive. And I have told you before, some days that positive thing was a very hard goal to keep.

Many of my fellow breast cancer survivors have gone on to experience additional cancers.  I don’t want to term them secondary, because that is not necessarily the case. My additional cancers have come in the for of skin cancers. Basel cell and squamous cell. Again, I count myself lucky.  I am still around to kvetch.

Recently a friend of mine died.  Not of breast cancer.  Just went to sleep one night and that was it.  His wife is a current breast cancer patient. Today is her birthday.  I send her all the love in the world. She lost her rock.  And he was an amazing man.  Such a big heart. And she has an equally big heart.

But for the grace of God go I.

So that is it for me. Just checking in.

 

 

Posted in breast cancer | Tagged , | Leave a comment

but for the grace of god go any of us

This is a community member. This could be anyone, and it’s legitimate. This is NOT someone who is faking anything and with all she has faced so bravely I don’t know how she does it.

She’s a real woman and a mom and she can’t catch a break.

Brain tumors, other potential cancer-like growths, and Mitochondrial Disease. (Mitochondrial Disease examples are MS, Parkinsons, and Lou Gehrigs Disease (ALS).)

But for the Grace of God Go any of us. If you can help, every little bit helps. Even just sharing this helps.

Thank you

From her Go Fund Me months ago:

*updated*  Beth has always worked two jobs – however – in early December 2018 one of the attorneys at the lawfirm she worked at told her “if you’re having seizures I can’t have you here”… two weeks later she was let go – the Friday before Christmas.  She was not told why.  She was told only that she had 5 minutes to gather her things and leave and and never come back.   She rarely ever took a sick day even with the diagnosis of a brain tumor and lesion, which causes her to have severe vertigo and balance issues, seizures, headaches and fatigue…. 

In 2012 she even donated one of her kidneys to someone who needed it!  To hear her say it, “it was the right thing to do.  And, I had an extra one anyway.”   She’s always one to make people laugh…..She has been battling migraines since age six and was diagnosed with epilepsy a few years ago.  Now she is facing a recent diagnosis of a CORTICAL DYSPLASIA LESION and a LOW GRADE GLIOMA (brain tumor).  Which was actually discovered in 2014 on an MRI taken when she had a stroke.  However it was not disclosed to her until  June 2018 when she began having serious issues.  Someone dropped the ball big time!

Help Beth McNulty Battle Mitochondrial Disease

From her Go Fund Me this August:

AUGUST UPDATE – Beth’s is now being treated by a Neurologist at Einstein for Mitochondrial Disease. Mitochondrial Disease examples are MS, Parkinsons, and Lou Gehrigs Disease (ALS). She has an illness you cannot see and if she had been treated correctly years ago may have been able to avoid this stage. THERE IS NO CURE. THERE IS NO MAGIC MEDICATION. Mito is controlled through diet and nutrition and overall management. The hardest part for her and for us is the effects of the cognitive decline. She can’t do many of the things she used to even just around the house and its devastating to see and devastating to her.

At this point she has been using a cane to walk since November. She has dementia like symptoms more often but she still has more of a “good day” than not so that is what we hang onto. The right side of her body is weak and her hand tremors which is also starting to happen in her right leg. She cannot hold a cup, and her right hand remains closed and is painful to open so we bought a small toy football for her to hold to keep it open.

She is incredibly effected by sound – too many “noise sources” are very confusing for her and can be overwhelming and even physically painful – she says it makes her ears burn – which also triggers seizures (before a seizure she usually touches her ears and face and that’s how I know she’s about to have an issue). She also gets very confused at these tmes and often has trouble finding her words or remember the conversation she is in. I think this may be part of why she stays in alot.

Her body cannot produce the energy it needs as fast as it is being used. Some days she cannot even move to reach for something because her body just wont cooperate and she is exhausted but when she CAN do something even if it is for a short time she does.

She cannot eat many solid foods at this point because she cannot digest them well (Gastroparesis) and chewing physically makes her Jaw tired.

We focus on key nutrients like Magnesium, Vitamin D, Iodine and B to keep her energy levels up. Her medications are on a schedule – Thyroid, Seizure, Migraine, and the foods we make sure she has every day are Avocado, Mango, Banana, Chicken and FlaxSeed.

In June she had and EEG and ENG, in July she had another w/wo contrast so her Nuero can compare with all the other scans dating back to 2014 when they discovered the tumor and lesion (but forgot to tell her about) but ALSO discover her Gastroparesis, and Thyroid Disease – 3 effected Organ systems = Mitochondrial Disease) – but 5 years later here we are…

The ENG was a very painful test of electrical conduction done in two parts – the first was topical electrode shocking her muscles and the second was long needles that shocked her muscles once they were inserted – I had to leave the room – it was like watching her be tortured for two hours.

This disease is robbing her and us. It’s painful for her to have and painful for us to watch her go through knowing nothing can be done. Alot of people seem to be google doctors which is very frustrating – we know what we are dealing with because WE are dealing with it although we do appreciate the well intended suggestions of trying this or that or maybe its “just…” we finally have a have a very educated team of medical professionals that are experts in their field.

Beth thought she had unemployment funds until December and in May was tricked into signing a release not to sue her former employer for an ADA claim in exchange for them not to contest it. and her last payment was in June. She has applied for disability but in the meantime we could really use some healp.

Help spread the word!

Posted in Uncategorized | Tagged , | Leave a comment

damn it all….lymphedema and life

Damn it all. I think I am getting to that age where stuff just happens…to you…to me…to everyone around us.

I had been feeling a little sad sack about myself because well….I am back to physical therapy. My balance is a little wonky at times. And this summer I seem to have developed slight and light lymphedema.

What is lymphedema? Swelling in an arm or leg caused by a lymphatic system blockage.

Lymphedema is caused by a blockage in the lymphatic system, part of the immune and circulatory systems. Lymphedema is most commonly caused by lymph node removal or damage due to cancer treatment.

If you have had breast cancer and you have had sentinel lymph node or any lymph node removal, you know all about this. And fear it. It can be brutal and a little painful because of the swelling.

I had slight lymphedema in my left arm after my breast cancer surgery. Then nothing ever again.

Things I was never told about lymphedema or just even having the sentinel node removed include that I should have had myself fitted for an arm sleeve for travel especially flying. Why? Read here off of Penn’s website (note I am a Penn patient):

There has been a longstanding controversy regarding the use of prophylactic compression garments following lymph node dissection during air travel. The Casley-Smiths reported that 6% of lymphedema patients initially develop swelling during or following air travel. This has supported the practice of wearing compression class I garments on limbs at risk during extended airplane flights.

The physiological rational for this practice is the increased movement of fluid across blood capillary walls when tissue pressure decreases. Pressure exerted by the body’s tissues opposes the leakage of fluid from blood vessels. This pressure is important in maintaining a balance between the leakage and removal of fluid. If too much leakage occurs, chronic swelling can develop. When we are aloft in an airplane the cabin is pressurized. Cabin pressures are significantly lower than the atmospheric pressures we normally experience. When atmospheric pressure drops, so does our tissue pressure. They are directly related. As tissue pressure is reduced, there is greater movement of fluid from blood vessels into tissue. Consequently, fluid may build up to the point that it exceeds the transport capacity of the lymphatic system. Most people develop some degree of swelling if they fly for a long enough period. For example, we generally have difficulty donning our shoes once we’ve landed on the other side of the Atlantic. Our feet have swollen. People with compromised lymphatic systems will have greater difficulty removing the extra fluid and remain swollen for longer periods of time. If they fail to receive appropriate treatment, they may remain permanently swollen. Only the territory drained by the resected or irradiated lymph nodes is at risk. For example, a woman who has undergone dissection of the lymph node in her armpit will only be at risk for swelling in her breast, arm, and upper trunk (on the side of the surgery). The rest of her lymphatic system is intact and should be able to adequately drain fluid from all other body parts…..The current recommendation of the Lymphedema Service at the Abramson Cancer Center of the University of Pennsylvania for patients who are at risk but have NO history of swelling is to wear a Compression Class I sleeve during flights greater than 3 hours. All patients who have had an isolated episode of swelling should wear a sleeve regardless of the length of the flight. All patients with chronic lymphedema should wear a sleeve or apply compressive bandaging during ALL air travel. The sleeve should be donned before the airplane cabin is pressurized. This can be done at the airport gate or on the plane prior to take off. The sleeve or stocking should be worn for a brief period, 1-2 hours, after landing. A trained professional must fit compression sleeves. Your hospital may have a physical or occupational therapist capable of fitting compression garments. Alternatively, many surgical supply or durable medical equipment providers employ trained fitters. It is important that you contact your insurance company first since they may have contracted with a particular provider. ~ Dr. Andrea Cheville

I never ever knew ANY of this until a few months ago. How it came up is I was speaking with one of the physical therapists where I go about life after breast cancer. She deals with a lot of lymphedema patients. I never knew until I was there post knee surgery. This therapist works with patients on specific exercise regimens. I never even knew because no one told me there were specific physical therapy regimes available for breast cancer patients.

Honestly, I feel kind of dumb I didn’t know. But now I do and I was fitted for a sleeve for travel and flying. I also have this great booklet from Chester County Hospital (which is part of Penn) of exercises.

When I am at physical therapy now, I am wearing athletic socks with slight compression capability. There are these socks available so you don’t feel like your only option are Grandma’s old compression stockings.

I don’t like the balance issues so I am working to rectify them. But some on my care team are starting to wonder given the addition of slight lymphedema in my left foot and ankle, balance issues, and the worst hot flashes yet if this isn’t slight Tamoxifen toxicity. I have two years left to take it. Please note I will take it all 10 years. I am not a good candidate for aromatase inhibitors and I am not playing Russian roulette by going off everything. So I will continue to suck it up.

I have a “Thou Shalt Not Whine” sign. Obviously I am ignoring it.

A week ago someone I have known since my early twenties just died in his sleep. His wife is living with stage 4 metastatic breast cancer. Not to sound trite but that is one of those life is unfair moments I am having a hard time processing. The service is today and I am wrestling with going. My sad trigger post breast cancer is death and funerals. I know I should go and I will go but I don’t want to say goodbye to yet another part of my youth.

F@ck. Yes I cursed again. Perhaps I need a “Thou Shalt Indeed Whine And Curse” sign instead.

And then there is this other thing. Someone else I have known forever (especially if you calculate the years in dog years which is over 300), texts me yesterday. They ran into a mutual friend so she wanted me to hear it from her. She’s a breast cancer survivor too so I think I literally stopped breathing for a moment before I read her whole message. She was diagnosed with glioblastoma a couple of months ago and has been undergoing treatment. That’s brain tumors in plain English.

F@ck F@ck F@ck.

Come on God and the higher powers. Enough already.

Why is it when you hear things like this you remember drunken summer nights dancing and raising hell? Is it a subconscious desire to be young and immortal again?

Perhaps. But my friend is responding well to treatment, has a plan, and is super positive so I am getting on board. But it’s still a shock to the system.

Life is a long strange road indeed. With testing along the way that makes you pause and reflect. I am a goddamn lucky woman and I love my friends and family. But damn. We aren’t 21 anymore. But the reality is do I really want to be 21 again? Probably not. But adulting has it’s challenges, doesn’t it?

Live your best life. That is the best that any of us can do.

Posted in breast cancer | Tagged , , , , , , ,

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.

Posted in breast cancer | Tagged , | 1 Comment

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!

Posted in breast cancer | Tagged , | 1 Comment

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

Posted in breast cancer | Tagged , , , , , , , , , | 3 Comments

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……

 

Posted in breast cancer | Tagged , , | 1 Comment

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.

Posted in breast cancer | Tagged , | 1 Comment

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

 

Posted in breast cancer | 2 Comments