This is my experience with being diagnosed with stage 1 breast cancer and what followed that.
Everything I share is just my experience and my opinion. I’m not sharing medical advice or thoughts about what anyone else should do.
I respect that everyone’s journey is deeply personal and that my choices and feelings may be very different than yours. I’m sharing this information because I know there are other women who need to see my ups and downs so theirs feel normal.
As I begin sharing my journey it’s been less than two weeks since my diagnosis.
I’ve been sharing my experience of my daughter’s addiction for a few years now. When I started sharing that experience I was on the other side of the worst part of my emotional pain. Not that her addiction was over, but I had learned how to live a healthy fulfilling life and create my own peace of mind whether my daughter was in active addiction or sober.
I’m using the same tools I used to help myself through my daughter’s addiction, so I think I’m processing things and moving forward well, but at the same time I’m experiencing some very raw intense emotions.
Any trauma or crisis that comes up in life will bring all your fears to the surface and multiply them exponentially. You’ll see mine as you read through this blog. I know these fears are opportunities for healing and I will work through them as I’m able to release my resistance to the idea that I even have breast cancer.
I started writing my experiences down early because it’s therapeutic for me and I think capturing my raw unedited thoughts and feelings of the experience will help anyone else who is reeling from such a shocking diagnosis.
It’s OK not to be OK all the time.
I’ve seen the stories of women who say they got the diagnosis, cried for an hour, then started fighting and never looked back.
That wasn’t me. I cried off and on for days and I plan to cry whenever I need to.
In these days of allowing all the shitty feelings I realized that the true source of my strength is my vulnerability.
My strength comes from trusting that I can feel the full spectrum of human emotions and that enhances my quality of life instead of detracting from it.
This is my journey and I’m honoring myself by doing it my way.
I hope that seeing me do it my way frees you to have your journey your way.
I’m very healthy. I don’t drink or smoke. I exercise regularly. Getting enough sleep and my mental/emotional health are a priority in my life. I had no reason to believe I had any health issues.
I’ve always kept an eye on my heart health because my dad died of a heart attack at the age of 47. My mother also had a heart attack. Heart issues wouldn’t be shocking, but I would still be surprised because of my consciousness about my heart health over the years.
Just a warning that I swear quite a bit in this blog because I don’t want to sugar coat how I feel. This isn’t a party. I think sugar coating my experience is an injustice to any woman who reads this and then shames herself because she doesn’t feel as brave as I falsely appeared to feel because I wasn’t vulnerable enough to share my truth.
I’m also going to talk about some intensely personal things that I would normally never share publicly, but they’re an important part of my journey so I’m sharing them.
I had my annual mammogram.
It’s important to note that I had it late, and almost skipped it.
I had no reason to believe that anything was wrong with me.
My tumor could not be detected with a self-exam and I felt very healthy.
I’ll never know if it would have been detected in March or not or how it would have affected my course of treatment, but I’ve had to give myself a lot of grace for this.
I decided early on not to beat myself up for this and I haven’t.
My mammogram was due In March & I didn’t have it until the end of December.
I didn’t set an appointment in March because I had moved to a different state, gone through a divorce, and Covid so a mammogram wasn’t a priority.
The only reason I made the mammogram appointment was because I got lost looking for a different doctor’s office.
Someone who worked in the hospital was showing me the way and dropped me off in the breast center by accident.
When I went up to the counter the woman working told me that my doctor was next door.
Since I was there I made an appointment.
Now looking back, I feel like God was looking out for me.
There’s no reason to ever skip a mammogram.
They’re the fastest easiest kind of doctor appointments. I’ve never been there more than 30 minutes total.
If you’re reading this and you haven’t scheduled your annual mammogram, just do it.
If you don’t have your health, you can’t do any of the things you think you’re too busy doing to stop and get a mammogram.
My doctor’s office called and said my mammogram was abnormal and I needed to come back for further imaging.
I cried as soon as we hung up the phone.
I was scared, which is totally unlike me.
I was shocked at my response.
Everyone told me I would be ok because it happens all the time.
Our culture is so preoccupied with being ok.
I find this increasingly frustrating as my journey goes on.
It’s actually healthy not to be OK all the time.
Our unwanted negative feelings all have a purpose.
Fear is actually here to tell us what’s important to us and what we’re afraid of losing.
Of course I’m afraid of losing my health.
It’s super important to me.
I did something else odd that day.
I went to TJ Maxx to do some retail therapy.
Normally I only shop with a purpose.
Before long I had a candle, work out shirt, frying pan and dog treats.
I looked for a fuzzy blanket, but I couldn’t find one I liked.
In a moment of clarity, I thought I don’t want these things to carry the energy of my fear of cancer on them and remind me of that fear every time I see them.
I don’t keep things in my home that have bad memories associated with them.
Why would I now bring these things into my home that have fear and panic associated with them?
I put everything back but the dog treats.
Giving my dogs treats makes me happy.
I went to my favorite path and walked a few miles and grounded myself.
I snapped out of my funk and was fine until my next appointment.
I went back for further imaging and expected to get the all clear.
They found suspicious microcalcifications in my left breast.
The doctor said I needed a biopsy.
He said there was a 30% chance it was cancer and anything over a 5% risk should get a biopsy.
He also said I could wait it out and have it checked every 6 months.
The biopsy felt excessive, but I just wanted it to be over with, so I made the decision to do it.
Insurance also played a role in my decision.
I have great insurance until the end of April.
Might as well be sure I’m healthy now.
In the past I have said no to a recommended biopsy.
When I was going through early menopause my doctor thought I had ovarian cancer because I had an ovarian cyst that looked abnormal and I wasn’t even 40 yet.
Because of my age, menopause seemed out of the question to my doctor.
I knew in my bones it was menopause and I was right.
This time even though I was unsure about needing the biopsy I said yes before I really even thought about it.
I was pretty disappointed that I needed the biopsy, but also I was still hopeful and OK.
Friday 1/ 29/21
I had my biopsy and I had not researched the procedure.
It was a stereotactic core biopsy and turned out to be more involved than I expected, but also not that bad.
The staff was super kind and helpful.
They even had aromatherapy patches for my gown.
I love essential oils so that was a pleasant surprise.
I did as much heavy breathing as I could with a mask on.
At one point I had to ask to pull my mask down for a minute to get some fresh air, but I think it was more my fears and emotions than physical pain.
It never actually hurt, I only felt pressure and some stinging.
The doctor did a great job not hurting me when he was numbing me.
My sister had offered to go with me, but I said no because I didn’t NEED anyone.
I wanted someone there, but I was trying not to make a big deal out of it.
That day I went home and learned a big lesson.
I need to allow what I want.
I felt lonely about going through it alone.
I decided that I would start asking for and allowing help.
Not just with my health, but in life.
I love that I’m an independent woman, but I can also be a little too independent.
I don’t always ask for what I want, but I decided I wanted to change that.
I was surprised by was how tired I was for the entire weekend after the biopsy and I had serious foggy brain into the next week.
I kept wondering if I had overreacted getting the biopsy.
I went to get my biopsy results alone.
Apparently I forgot about asking for and allowing help because once again my sister and mother had offered to go with me.
I was sure I would get an all clear and skip right out of there.
That is not what happened.
I was told that they found a small focus (1.5mm) of invasive carcinoma.
The doctor said that was where his work with me would end and he would refer me to a surgeon, oncologist, and I would need radiation.
Time slowed down, it felt like I was in there forever, and I got tunnel vision.
The doctor kept talking, but I stopped hearing him.
I just wanted to get the fuck out of there.
I felt so much resistance to what I was just told.
I couldn’t bring myself to say I had breast cancer.
Did I even have breast cancer?
The doctor didn’t use those words.
I think he said cancer cells.
It felt dramatic to say I had breast cancer or even cancer.
It was ONLY stage one.
It was small.
I felt like a breast cancer fraud.
It seemed like calling something so small breast cancer took away from women who had later stages of breast cancer.
I was in the middle of some serious mind fuckery.
I was in denial.
I kept trying to tell myself I was OK because it was detected so early.
I never thought I was going to die, It was how it would affect my quality of life and breasts that was a concern.
This was all going on in my head while someone was talking to me.
The doctor had left and someone else was in the room with me.
I didn’t hear ANYTHING she said.
I came out of my fog when she asked me if Friday was ok for my appointment with the surgeon.
Then she handed me a red folder with my results and some other information in it.
As she walked me to the door I wondered if all their folders were red or if women with benign results got green folders or maybe no folder at all.
Did everyone who saw me see the red folder and know I had cancer?
The second I got in my car the tears exploded out of me.
I’m so healthy.
I feel so young.
This isn’t possible!
THIS ISN’T FAIR!
I felt rage, fear, sadness….all of it.
I sat in my car for about an hour just crying.
I wanted to go talk to my family, but I also didn’t want to.
I didn’t want to say the words out loud.
I wasn’t even sure what words to say.
My ex-husband called and encouraged me to drive to my sister’s while he was on the phone with me.
When I got to my sisters and blurted it all out I started crying again.
Luckily, my sister and her wife are both nurses, so I just handed them the red folder.
I don’t even remember what I said.
I do remember that when she offered to go to the surgeon with me I said yes this time.
By the time I went to tell my mom I was able to do it without crying.
The next four hours passed slow and fast at the same time.
I spent most of the time talking to close friends and crying.
I was able to pull it together and hold space for my coaching clients that afternoon though.
It felt good because when I work with a client they’re my sole focus.
I felt “normal” during the time I was working with them.
I woke up feeling like I was in a nightmare.
I felt robbed, pissed & angry.
2020 was really challenging and I felt like I was finally on the other side of it.
I had spent 2020 focused on nurturing myself through recovering from my divorce, building my business without the financial support of a spouse, and supporting my daughter as she got sober in the last half of the year.
A stage 1 prognosis is good.
I wasn’t concerned about dying.
I was concerned about my quality of life.
When I went through early menopause I felt awful for a few years.
I had no energy, I gained weight, my bones and muscles always ached, I had no libido, and I felt like I looked older every time I looked in the mirror.
I felt like I lost a part of myself.
I eventually researched hormone replacement therapy and my life changed.
Once I got all my hormone levels balanced I immediately started feeling better.
Over time as I used that energy to continue to work on my mental and physical health.
At 48 years old I feel better than I have ever felt in my life.
If I have a muscle ache it’s because I worked out hard.
There’s a reason for it.
I have the energy I need to get through each day, I look and feel young for my age, I have my libido back, and I lost a lot of the weight I had put on.
The way I feel now is because I take care of my overall health, but how I felt before I started taking hormones is something I’ll never forget and I don’t want to go back to that.
My cancer is HER2-, but Estrogen and progesterone +.
I don’t know how to explain HER2- yet other than I know that’s why I don’t need chemo.
Since my cancer is hormone positive I will need to stop taking my hormones AND also take hormone blockers so my body doesn’t absorb any of the hormones it still makes.
Hormone blockers come with a lot of side effects like osteoporosis, brittle bones, thinning hair, and body aches and pains.
So, while the cancer can be cut out of me, it will affect the rest of my life.
That’s why I’m so emotional about it.
All I could think is I’m single, I’m going to feel dried up and 80 when I’m 50, my currently very nicely shaped boob is going to be seriously banged up if I get a lumpectomy, and my libido is going to disappear again.
I spent 2020 intentionally alone because I wanted to work on myself so I didn’t bring a bunch of baggage from my divorce into another relationship.
I thought maybe later this year I would be ready to date again.
Then there’s my business.
What if I couldn’t work for a while?
Cancer brings up every fear you have and multiplies it exponentially.
Going through every what if scenario seems very natural to me when you get a bomb like cancer dropped on your life.
That day someone gave me a pep talk about fighting the cancer.
I wasn’t ready to fight anything.
I was reeling and full of sadness.
The last year had been really fucking challenging like I said above.
I thought I deserved to coast for a while.
Cancer puts a huge question mark on your health and before I heard those words, my health was a part of my life that didn’t have a question mark over it.
So of course I was pissed.
Plus, what about my daughter?
I felt the fear of not being able to be there for her too.
I put my daughter and everything else in my God box.
I asked people to stop telling me I was going to be OK or not to be sad.
I didn’t feel ok, and I WAS sad, so why would I pretend to feel otherwise?
As a society we’re overly preoccupied with being OK.
Think about how many times you’ve told someone not to be sad.
I do it too.
There’s a time to look on the bright side and there’s a time to feel your feelings.
I needed time to feel mine and I wasn’t budging.
I’ve cried so many tears.
I woke up at 4am and cried for a while.
I woke up at 6 and cried.
I cried all morning and reached out to some friends because I was so upset.
I had an appointment with the surgeon that morning.
This time I took my sister with me.
I felt like crying again as we pulled into the parking lot, but I really didn’t want to cry in the doctor’s office.
I wanted to keep my emotions low so I could remember what she said.
I asked how long the surgery would take.
She said 2.5 hours.
I asked why because as far as I knew she was just cutting out a small spot of cancer.
She told me more about removing the tumor and some lymph nodes and the process they go through to determine which lymph nodes to take.
Wait a minute, I don’t have a tumor, I have microcalcifications.
She explained to me that once it’s determined to be cancer it’s considered a tumor.
As we talked to the surgeon I could see a theme playing out.
The surgery was much more involved than I expected.
I noted to myself – expect everything to do with cancer to be much more involved than you expect.
As we talked about it apparently my face turned white because my sister kept asking of I was ok.
That’s when I started crying again.
I wasn’t ok.
I was fucking scared and pissed.
I’m a very healthy person.
I’ve had two surgeries in my life.
Tonsils and a c section.
The part of my life that felt the strongest felt really fucked up now.
There were so many unknowns about my health.
Would I be able to show up for my clients?
I don’t get sick or vacation pay.
And the medical bills.
I only have my current insurance through April.
Idk what insurance I’ll have after that so I’m going to have to start all over again with deductibles and out of pocket maximums in April.
By the time I’d gone to the surgeons I only knew I had cancer for two days, but I had already received 3 medical bills and as I was pulling in the parking lot I got a fourth one via text message.
Bills can now show up on my phone at any moment.
The text message medical bill felt invasive in that moment.
I was going in to see the surgeon who was going to cut on my breast and dealing with that is enough in the moment.
(I did some thought work on medical bills here if you’re struggling with yours too https://www.facebook.com/heatherrosscoaching/photos/a.579864469139708/1164590264000456)
My lumpectomy was scheduled for the following Thursday.
I felt like I had tunnel vision and could barely hear again, and I felt an indescribably heaviness in my being.
It felt like impending doom.
I know that sounds dramatic, but I’m keeping it real. That’s how I felt.
My sister and I went to breakfast when we left the surgeon.
Not something I would normally do.
I’d want to go walk and get on with my workday.
But I had cleared my schedule for Friday so I could cry it out if I needed to.
I don’t see clients on Friday but that’s when I do Podcast guest interviews or other meetings.
I knew I wouldn’t be in a good place mentally, so I gave myself that gift of not having to put on a smile and pretend all was well.
After breakfast I went home and cried.
I sat in my living room for a few hours in shock, disbelief, and more mind fuckery.
It was a beautiful sunny day and I felt like I should want to go walk, but I had no want in me.
After a while I got dressed to go walk.
Then I went to my desk and leaned down with my elbows on it for a long time.
I just remember thinking you’ve been doing this for a long time.
I wasn’t present in my mind or body.
I was going to go walk but I decided to let my dogs play instead.
I went to my moms and sat there while my dogs ran in her yard.
It felt like a major accomplishment to leave my house.
Seeing my dogs happy makes me happy.
They can pull me into the present moment with all their cuteness.
After that I swept my porch.
As I was doing that I had my first moments of clarity since my diagnosis:
- I thought you know how to get through this in an emotionally healthy way.
- You have to put your own oxygen mask on first.
- How you think and talk about cancer is very important because it will shape your experience of it.
- You have to educate yourself about cancer.
- It feels like the cancer is in control just like the addiction was, but you know how to take your power back from it.
- I have to create my own peace of mind in this situation.
No one can do it for me.
I felt a little lighter for just a few minutes.
Analytically I knew what I was thinking was true.
Emotionally I couldn’t connect with it yet, but seeds were planted.
I also met with a naturopath that day.
We talked about all the ways I could support my health through this journey and ways to counter some of the side effects of cancer treatments.
After I met with her I experienced a few hours of relief.
It was the most relief I had felt since my diagnosis, but that heavy blanket of fear was still covering me.
I woke up crying again.
I really want to know WHY…..another similarity I experienced with my daughter’s addiction.
We want to know why so we can be assured we can FIX IT OR STOP IT.
KNOWING THE WHY can help, but it can also be a place you get stuck if you feel you have to know to move forward.
I see it in myself right now.
I want to know why.
Did I do something to cause this?
Was it always going to happen or was it something I did wrong?
Some of my most painful thoughts were thoughts of self-blame that I caused my breast cancer.
I had to allow them so I could process them, but I’m glad I was able to release most of the painful self-blame within the first week.
Of course I want to know why, but I also know I can’t let that hold me back because I want to make it all stop until I know.
I’ll learn as I move forward.
I woke up and immediately felt that nervous nauseous feeling in my stomach.
I got up to let my dogs out and thought my life has turned into a fucking country song.
I mentally sang a few lines of the country song and laughed out loud for the first time since Wednesday when I was diagnosed.
Later that day I decided to postpone my surgery.
I heard if you have a lumpectomy and radiation and your cancer comes back, and you need a mastectomy you can’t have reconstructive surgery or if you can it’s much more difficult.
My sister and her wife heard this from someone who found that out after she had radiation.
It seems like something my doctor would have told me.
I again realized how important it is to do my own research.
That’s exactly what I did with my daughter’s addiction and what I need to do with cancer.
I need to understand all the treatments and all my options.
I let fear push me into making a quick decision and fear was keeping me from researching.
As I was realizing that I also realized that researching wouldn’t have gone well the first week.
I didn’t have the mental capacity to filter out all the things that didn’t pertain to me and I easily could have fallen into a rabbit hole of everything that could go wrong and caused myself more suffering.
I’m so grateful that I got the information that led me to postpone my surgery because even if I chose the exact same route to recovery that I originally planned I will be approaching my treatment from a much more empowered place instead of total fear.
The heavy lead blanket of fear I’d been cloaked in lifted that day.
The sadness and fear were still there, but the feeling of impending doom has been gone since that day.
I looked at my planner for the first time since Wednesday and saw the empty pages.
I had let life stop when I was diagnosed Wednesday.
I knew that I had to start filling those pages again.
My rituals keep me going.
I’ve also learned that from my daughter’s addiction.
When I don’t know what to do I find myself getting dressed to walk just because that’s what I do every day.
I like making my calendar and planning my week with my best brain (rested and clear) so I’m not trying to figure out what to do next in the middle of an afternoon slump.
I know that doing “normal” things is key right now.
I want to allow time to feel my feelings and understand their source so I can learn from them, but I also want to keep moving forward.
At first when I decided to postpone my surgery I felt relief.
But then came the fears of having to call the doctors and change my appointments.
I was worried my surgeon would be mad about me rescheduling.
On one hand I don’t care if she’s mad.
On the other hand maybe I just needed a place to park some of my fears.
One of my naturopath’s recommendations was to listen to binaural beats every day.
I found delta wave binaural beats on my Breathe app and listened to them while I read for a while at bed time.
It was the best I slept all week.
I woke up feeling pretty amazing.
I think I felt even more amazing because it was such a stark contrast to how low I’d been feeling.
That day I felt a little less fear and a little more courage.
I’ll definitely be listening to the binaural beats every day now.
I cancelled my surgery and scheduled an appointment with my oncologist for Thursday.
My surgeon called me and was very understanding about my need to research more before my surgery.
Tuesday 2/9/21 – Wednesday 2/10/21
Lots of ups and downs.
Lots of crying but also lots of laughter.
Lots of staring at the wall in disbelief.
Lots of being productive and creative in my life and business.
In these days I realized that the true source of my strength is my vulnerability.
My strength comes from trusting that I can feel the full spectrum of human emotions and that enhances my quality of life instead of detracting from it.
I also talked to a friend who chose to have a double mastectomy instead of a lumpectomy and radiation.
We talked about how we had the same thoughts, fears, and concerns when we were first diagnosed.
It felt really good to talk to someone who understood my concerns about my future quality of life and didn’t feel a need to tell me that everything was OK.
I laughed the most I had laughed in a week while we talked.
It felt very freeing.
I realized how uptight and protective I’d been with my emotions, expressions, and muscles.
I was unintentionally still bracing for impact to the point that my jaw was sore from clenching it.
Talking to her about her experience with a double mastectomy and reconstruction really helped me because this was an option I was originally totally against but it was becoming more appealing because I’m so against radiation.
I know some people will read this and think this is crazy and I respect that.
This is a very personal journey.
I’ve been digging into my medical records and realized I have microcalcifications in my right breast as well.
They just aren’t suspicious…..YET.
This is troubling to me because the microcalcifications in my left breast that turned into cancer were present and not suspicious for a few years before that.
Will they eventually turn into cancer as well?
I don’t want my life devoted to playing whack a mole with cancer, lumpectomies, and radiation.
I could get a double mastectomy with reconstruction and avoid radiation.
This doesn’t eliminate the possibility of me getting breast cancer ever again and neither does a lumpectomy and radiation.
This is why I see more and more that I have to create my own peace of mind in this situation no matter what treatment I choose.
I haven’t made any final decisions for my treatment.
I realize that while initially this is a much more invasive procedure with longer recovery, to me it’s the option that creates the most relief in my body when I think about it.
I’m scared of facing any surgery, but I can’t deny that this option is becoming more appealing.
The truth is I don’t like any of my options right now.
So, I’m focused on liking my reasons for the option I choose.
I woke up in a lot of fear about my appointment with the oncologist that day.
There were a lot of tears that morning.
I still can’t even believe I have an oncologist.
This can’t be real.
I had printed all of my new patient paperwork so I could fill it out ahead of time.
I got out the red folder I got the day I was diagnosed.
I put the new patient paperwork in the folder and set it on the counter with my purse.
I looked at it for a minute and thought fuck that red folder.
I took everything out, threw the red folder in the trash, and put everything in a cute decorative file folder.
I had a list of questions to ask the oncologist.
I hoped to leave there much more informed.
I left there frustrated.
She was either unprepared and didn’t really know my case or just expected I would do exactly what she suggested without questioning it.
I kept wanting to talk about the big picture, my future, and my quality of life and I felt a big disconnect between us there.
I asked her what the purpose of an oncologist was, and she said to make sure that I don’t get cancer again.
Yet when I told her I wanted my treatment plan to consider preventing it in the future she said I shouldn’t make decisions based on the possibility of it coming back.
She also confirmed that no matter what treatment choice I made I would need hormone blockers.
I’m sharing this because it’s so important to do your own research and it’s ok to disagree with your doctor and ask lots of questions.
While going through my daughter’s addiction I realized that the experts don’t always know what’s best for me or my family.
None of them have a crystal ball.
It’s up to me to gather all the evidence I can and focus on what resonates with me and what feels right in my body.
When I say what feels right in my body I’m talking about my intuition.
None of my doctors have to live with my decisions.
I’m the only one who has to live with the decisions I make and how they affect the quality of my life.
I’m going back to her on Thursday to get the results of my blood tests and if I don’t have a different experience with her I will find another oncologist who is not only concerned with killing my cancer but also concerned with my overall quality of life.
Before I left the oncologist’s office I got bloodwork done to test tumor markers and see if I have the BRCA gene.
When she was done the tech that drew my blood opened a drawer full of every color of bandage and chose a red one.
I actually snorted a little trying to hold back my laugh that even though I threw away the red folder I was still going to get a red bandage.
I walked out of the doctor’s office pointing at it to show my sister and we both laughed about it.
Another takeaway from this appointment was that doctor appointments are data collection.
I went into the appointment hoping to walk away feeling better and that set me up for a lot of disappointment that day.
I know that I’m the one responsible for my own peace of mind, but it’s situations like this where I see my natural desire to turn my power over to external circumstances can cause me additional pain.
I went to my appointment giving the oncologist a lot of my power.
I went there in fear of what she would tell me I HAD to do and I wanted her to say something that would ease my mind.
No matter what treatment my doctor recommends I always have a choice.
Refusing the treatment they recommend is a choice, not one that I’d choose, but it’s an option.
Just because we don’t like one or both of our options doesn’t mean we don’t have a choice.
There’s a lot of power in owning that it’s a choice whether you like the options in front of you or not.
This is all I have to share for now. I’ll be posting more as I go.