Friday 2/12/21 through Wednesday 2/24/21
If you missed post number 1 start here:
I gave myself a lot of down time to just watch TV and spin my mental wheels.
I felt super sad and emotional.
I wasn’t giving myself much grace.
I kept thinking that I should be doing something with my life.
Breast cancer should be a wakeup call, but instead I was too emotionally wiped out to do much of anything but watch The Sinner on Netflix.
I’ll be honest and say that day was a total mind fuck.
That voice we all have in our head that can be a total ass hole, was coming at me full force and I didn’t have the capacity to call it out for its bullshit like I normally do.
I guess Saturday had a purpose because Sunday I woke up with some transformational insight.
Cancer is just a circumstance and there are multiple realities available to me regarding that circumstance.
There’s the reality where cancer has stollen my future and the reality where I still get to create whatever I want in life.
I had the thought the cancer has been in my body for a long time.
During that time, I was experiencing being really content in my life and excited about what I was building in my future and my business.
Since the cancer had been there all along the only thing that had changed since I knew about it was my thoughts.
That realization was incredibly freeing to me and a lot of my pain lifted.
Here’s a link to a post I wrote about that
I also gained more clarity about what’s important to me right now.
There are several things I really felt like a victim about since my diagnosis and I’ve had to go through the process of reviewing choices I’ve made and choosing them again or changing them.
One of the big ones was being single.
I chose not to date and to be single since my divorce.
Before my diagnosis I felt content with that decision and decided I would check in with myself later this year and see if I was ready.
After my diagnosis, a lot of pain and anger about my divorce came flooding up and I had to sift through it all.
One of my first thoughts was about going through this “alone”.
I’m not alone, I have my family and friends, but I was thinking about a significant other to lean on.
I had to be intentional and give myself the freedom to choose again because I felt like that choice had been taken away from me.
I know that’s not true, but I had to allow it to process it.
The only thing standing between me and what I want is me, so I have to be clear about what I want so I can go after it.
I’m focusing on knowing I can choose and create whatever I want.
Monday 2/15/21 – Wednesday 2/17/21
I had 3 very upbeat days.
I was riding the high of my realization that cancer didn’t define me or my future.
Those 3 days were also really creative for me. I did a lot of writing and I felt like I could fully engage in life, my business, and laughter.
I woke up with anxiety in my chest today for the first time in several days.
I have my follow up appointment with my oncologist today.
Saying that I have an oncologist still feels surreal to me.
I think the worst part of cancer is all the unknowns.
I won’t know if it’s in my lymph nodes until I have surgery.
The unknowns of my medical insurance after April.
I have the best medical insurance I’ve ever had right now, and I have a lot of security in that so knowing I’m going to lose it during this time brings up a lot of fears.
All the return risk factors are unknown at this point.
There will be more answers after surgery.
I have a lot of research to do about hormone blockers.
Some women say they feel fine on them, others have side effects like extreme fatigue, osteoporosis, and brittle bones.
What will they find in surgery? Will there be any surprises that change my treatment plan?
That’s just a few of the unknows I think about.
The interesting thing about the unknowns is life is full of them anyway.
We just don’t think about most of them.
Cancer severs you a platter of fears to choose from though.
It was the same way with my daughter’s addiction.
In both cases I have a “great reason” to be full of fear.
I have to remind myself that literally anything could happen to me at any moment all day every day.
I don’t spend time dwelling on it though.
It’s the same with cancer and addiction.
I need to gather the facts and make the best decisions I can with the data that’s available to me.
Then I want to release the cancer unknowns just like I release the everyday unknowns.
My brain wants to make those unknowns really important and be hypervigilant about them, but I will just keep working through it until that urge to react goes away.
My visit with the oncologist was OK today.
I was in a much better place emotionally.
My blood tests were good, and my tumor markers didn’t show any reason for increased concerns.
She said I will need to take hormone blockers for 5 years and see her every 3 months for 5 years.
That got my wheels spinning.
I decided for now I will try not to stray too far into the future when it comes to cancer and its effects on my life.
I will stay focused on the next right decision for me because every time I think too far ahead I feel full of fear and very emotional.
The BRCA test will still take a couple more weeks but I don’t think that will have any bearing on my decision.
As I’ve said before I don’t want radiation and that’s why I’m considering a double mastectomy with reconstruction.
The cancer is on my left side which means the radiation could affect my heart and there’s the chance it could affect my lungs no matter which side it’s on.
Then there’s the calcifications in the right breast.
I don’t want to keep worrying about them turning into cancer like my left breast did.
You can only have radiation in an area once so if you have it and the cancer comes back in that spot chances are I would end up having a mastectomy anyway.
The difference would be that reconstruction would be very different, I would lose my whole breast.
Right now I’m a good candidate for skin and nipple sparing surgery.
So, after reconstruction my breasts should still look “similar” to the way they always have.
Physically I will lose most or all sensation in my breasts.
I’ve read that some people get some sensation back, but I’m trying to make peace with that loss.
Everything I’ve seen for an after-radiation mastectomy and reconstruction Is way more involved.
Skin grafts from other parts of the body are used for reconstruction and aesthetically the results I’ve seen are widely different and involve major scars.
I’m taking all of that into consideration in my decision.
I’m sharing these details because I didn’t know most of this information when I scheduled a lumpectomy one week after my diagnosis.
Please don’t take any of this as fact.
They’re all just my opinions based on my research as a patient with my unique circumstances.
I’m not a health care professional or giving advice. I’m just sharing my experience.
Please do your own research and don’t rely on your doctors to tell you these things.
I know more than one person who didn’t know that you can’t have radiation more than once in the same spot and how it impacts reconstruction.
You deserve to know all the facts when you make life changing decisions.
My surgeon called me today with a recommendation for a plastic surgeon.
He’s out of network though so I have to keep looking.
This is the second time that I’ve sent my surgeon a message and she called me.
I find that very impressive and it makes me feel more comfortable with her as my surgeon.
While I’m in a much better place than I was last Thursday when I went to the oncologist, facing my situation triggers a lot of emotions.
I drove an hour to meet some friends for dinner that night and while I was driving in silence I thought about how vulnerable this feels.
Sometimes I feel really strong and feel like I’ve got this and other times I feel like a scared little girl.
So many contrasting emotions.
Writing about it helps me sort it all out.
I’ve been experiencing intense sadness off and on since Thursday.
I cry a lot.
I feel like I’m crying every tear I held back and didn’t cry my whole life.
Since I lived most of my life being a person who really didn’t feel, most of those emotions were just stuffed down and repressed instead of released.
My journey with this has been interesting.
I didn’t realize how much of my life I had spent numbing until I intentionally stopped numbing.
I started thawing my feelings and feeling them a little over 3 years ago when I started working with my life coach.
A big part of the coaching I received and now do involves naming and experiencing your feelings.
When I first started really feeling my feelings again it felt like something was wrong with me.
It seemed intense and all over the place.
Afterall I was used to feeling numb, but I referred to it as balanced.
The bad thing about that though was that numbness got rid of the fun feelings too like excitement, happiness, etc.
If you want to experience the highest of highs of feelings like joy and excitement you have to be willing to feel despair and sadness too.
Every emotion has a purpose so I’m letting mine flow even though it’s really uncomfortable sometimes.
I spent the day calling in network plastic surgeons trying to find one that can coordinate with my doctor.
After 20 calls I was pretty upset and frustrated to get so many no’s.
I woke up feeling a lot of stress and anxiety.
The fact that I can’t get my doctors coordinated and I don’t care for my oncologist is weighing on me.
Knowing how much help I’m going to need after surgery is weighing on me.
I want to have all of my doctors in place and know my treatment plan.
I’m ready to move forward.
I don’t want it hanging over my head anymore.
I really needed to talk to someone, so I called my ex-husband because I knew he would help me figure out what to do.
I needed his “get shit done” approach to things to offset how emotional I was.
I had an internal battle going on about how much help I would need after surgery.
I was having a hard time finding a plastic surgeon that would come to my town, but I didn’t want my family to have to drive me all the way to Tampa.
I’m independent and stubborn and I don’t like asking for or taking help.
That’s going to be one of my biggest lessons in this.
I will go from the person who is giving help to the person who needs it, and I don’t like it.
If I just accept help, I will have it.
Even my best friend is willing to fly out here and help me.
It’s really that easy, but I’m making it hard.
My ex gave me two great pieces of advice:
- Find a surgeon in Tampa
- Talk to my family about how much help I’m going to need
So simple right?
First I talked to my family.
I of course cried once again and told them how stressed I was about needing so much help.
Newsflash…….they already knew and were making plans.
My sister and her wife are nurses.
I have two nurses I can stay with when I get out of the hospital.
What more could I ask for?
My parents will keep my dogs, and someone will drive me to all my appointments.
They’d rather drive an hour and see me have all the right doctors instead of struggling to find doctors locally.
All I had to do was calm down and talk to everyone.
Something else really important I realized while talking to my ex is exactly why I don’t like my oncologist.
I really tried to like her, but I got nothing out of my two appointments with her other than the knowledge that I would have to see her 3 times a year for 5 years.
Every time I asked my oncologist a question in my first appointment she said, “I will talk to your surgeon about it”.
That was her answer to everything.
In the second appointment most of my questions were hormone related since taking hormone blockers is a big concern for me.
First, she tried to tell me I was too young to have gone through menopause even though I did 8 years ago.
She eventually conceded to “talking to my gynecologist about it”.
That also happened to be her answer to all of my other questions during that appointment.
I don’t need someone to talk to my surgeon and gynecologist, I need someone to talk to me and answer my questions.
If you’re reading this and you or a loved one is struggling with your doctors, then find new ones.
I know it’s hard to go against conventional medicine and what your doctors say, but there are doctors that will answer your questions.
A doctor is either on your team and supporting you or they need to fired from the team.
Ironically, after I made all of these decisions my surgeon called me and told me that she can’t perform my surgery anyway.
She knew for 2 weeks that I had decided against a lumpectomy because I had messaged her and called her office 3 times asking for plastic surgeon recommendations, yet she never told me that no plastic surgeons would go to her hospital and coordinate surgery with her.
She said she would send all of my records to Moffett Cancer Center in Tampa.
They have surgical oncologists, plastic surgeons, and oncologists all in one place.
That means I don’t have to coordinate all my doctors anymore.
Another fact of my stubbornness I’ll admit to is that my Mom wanted me to go there the whole time.
At 48 years old I still don’t listen to my mom.
I didn’t want to go there because I felt like a cancer center was for the people who were “really sick” with cancer and I was stubbornly clinging to not being one of those sick people.
My perception has changed though.
That’s where all the experts are.
Those are the doctors who do nothing but deal with cancer all day every day.
Those are the plastic surgeons that only deal with breasts damaged by cancer.
That’s who I want performing my surgeries.
I go there 3/10/21 to meet my new surgeon.
So many lessons learned in one day.
So much pain that could have been avoided if I wasn’t so stubborn.
I’ve surrendered to asking for and accepting help.
I’ve learned. I’m done with it.
I also know I’ll probably do it again…. this is going to take practice.
But wait there’s more.
All this happened by 10:30 am!
I also realized that I had two very painful thoughts plaguing me:
- I can’t live my life until cancer is behind me
- My life just keeps getting worse
I talked to some friends about those thoughts because I was done hurting myself with them too.
I could argue the case that both of those thoughts are true, but that doesn’t serve me at all.
What serves me is knowing that if I continue thinking those thoughts, that’s exactly what I will create in my life.
I started with asking myself if the opposite of those thoughts could be true.
Is it possible that:
- I can live my life while I go through cancer treatments and recovery
- My life can keep getting better
Yes, both of those are true.
Just creating the awareness of those thoughts helped me.
The thought of turning them around really excited me and I love creating things from excitement.
Both of my painful thoughts were creating a lot of inaction.
I didn’t want to plan anything because I needed to leave my schedule open for doctor appointments.
It was just an excuse and it kept me living in fear and not living my life which also made it seem like my life was getting worse.
Now I’m focused on living my life and making it better which means I’m making plans and creating a better life.
I’m so grateful that even in such emotional turmoil I can see that my battle is more with myself than with cancer.
How I choose to think and talk about cancer will shape my experience of it.
I will honor my sadness and the loss of my old normal, but I will also be very mindful that I am the creator of this experience.
Here’s a podcast I did where I explain more about changing my thoughts about breast cancer.