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

About carla

Writer, blogger, photographer, breast cancer survivor. I write about whatever strikes my fancy as I meander through life.
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3 Responses to at almost the eight year mark, the terror train makes a stop

  1. Trinity says:

    Sweet Carla…don’t sweat the small stuff and live for today like there is NO tomorrow my new BC survivor warrior sister.~xoxo

  2. Priscilla Fox Pfizenmayer says:

    I am sorry that you are going through this. You bring so much beauty to us. Please know that “positivity” and prayers are being sent your way.

  3. lin fred says:

    Your writing is so spot on on how I am feeling about all this breast cancer stuff. I was diagnosed at 64 had my lumpectomy and then radiation, then on to Tamoxifen. I have ups and downs, such mood swings! I try so hard not to be a bee. People just don’t get it. They think, oh you have the surgery so now you are okay. Hell no. It is for the rest of your life wondering if you will have a recurrence. Tamoxifen is such a strong pill. But if it saves you life, take it. My side effects are many, some come and some go. But the worse is the mood swings/changes. I have no support group. The people that do know never ask how I am doing. I know people don’t know how to deal with it or are afraid to ask, so apparently I know a lot people like that because no one asks except my 40 year old next door neighbor. Not my husband, my daughter and my sister in laws. Or no one at work. It kind of sucks. I went to a local support group and really didn’t come away feeling anything from it. I just had my full 1 year mammogram, came out good, no cancer. You are right a few days before you are so stressing about it. Thanks for your blog, I like the fact that there is someone else with the same issues and thoughts.

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