More Than MBC

Navigating Daily Life with MBC Lover of Melancholy, Morbidity and the Macabre.

[morethanmbc]

Is everyone drowning, or is it just me?

There is ALWAYS something upsetting life from being a steady straight line. I’m exhausted from feeling the spikes in heart rate/snafu’s.

My body is in a steady state of fatigue. My mind never quiets.

Alas, the only way out is through.

[morethanmbc]

#something I’m proud of #african violets

[morethanmbc]

This shift likely has nothing to do with me. What I’m feeling is a trauma response from previous experiences. My body is saying “this isn’t safe” but there is nothing to warrant that feeling. At least, I have no evidence to support any reason why I should feel this way. I wish I didn’t overthink. I wish I felt safe in relationships.

[morethanmbc]

There was a shift today. I felt it. I hope I’m wrong.

[morethanmbc]

There were two very large pine trees in the small grass lot near my Dad’s apartment. He had a fondness for them, and in turn, so did I. They’ve been cut down. I feel like I lost another little piece of him. The world keeps moving on and erasing the small reminders of him that comforted me. I cried tears of grief today- not truly for the trees, but for my Dad.

I also don’t know how to use this space anymore. I seek it out when big emotional things happen. But… it doesn’t feel “safe” given what happened surrounding the friendship breakup. Maybe I just need to try to build some security here again versus rebuilding something new. I don’t want to grieve this again, too.

[morethanmbc]

The end of an era.

[perfectfeelings]

“Don’t allow your wounds to turn you into a person you are not.”

— Paulo Coelho

[morethanmbc]

I’ve wanted to be hard-hearted, keeping a steel wall around myself, to protect myself from feeling or experiencing the rejection and hurt I endured in March. But closing myself off isn’t being authentic to the person I am. I’d rather be myself and get hurt again than to be someone I’m not.

[morethanmbc]

morethanmbc > fatedwithmbc

[morethanmbc]

To change my username or not? That is the question.

I hope to reignite my writing spark and am contemplating whether a name change will aid in that goal.

I don’t identify with my MBC diagnosis as much as I did when I was heavily writing here. Is it still a big part of my life? Yes! But I try to focus on it less. Giving it less power feels like I’m living my life.

[morethanmbc]

Validation from a random Instagram quote that I wish I had seen months ago… YES, please!!!

Also, so much has happened since my last post. I know I need to write a follow-up. But, it has felt daunting to do so. In due time, I promise to have an update.

[morethanmbc]

This is going to be a difficult one to write. I’m having a lot of big feelings. I’ve held off on this post, but not sure I can any longer. My mind might actually eat me alive if I don’t get the words and thoughts out.

First, the catalyst:

I have never been in a state of “complete” remission. When my oncologist informed me of my “NEAD” status in April of 2024, little did I know it came with a caveat. Apparently, it was my metastatic disease that was showing no evidence of active disease. Meaning, only my liver and left lung were in “remission”. This also means, my primary tumor site (left breast) has always had its tumor. Through all the treatment, through all the imaging, through all the follow-up’s and blood work- it never changed.

What led to this discovery? A breast MRI. A breast MRI that has opened Pandora’s box. A 30 minute test that has now upended my life all over again. Third times a charm, right?

Second, a little history:

An ER visit in January that required an abdominal CT scan showed a small tumor on my liver and a small tumor on my lung. So, my remission status had been tossed out of the window for the majority of this year anyway. When this happened, at my next follow-up, my oncologist and I agreed to maintain my current treatment plan and do more thorough imaging (MRI) on my next imaging interval. I was shocked at the findings but not really surprised. When remission was communicated to me, I had a terrible reaction and an instant fear it was only temporary. I couldn’t understand how backwards that seemed. I should have been happy and ready to move on. Little did I know my brain was preparing me for what was to come.

Third, what’s next:

The MRI revealed that my primary tumor has not changed in three years of treatment. The radiologist who analyzed the test recommended surgical intervention. I immediately contacted my care-team. Initially, the mass was chalked up to being scar tissue per my oncologist’s PA and I ate that up with a spoon. Two days later, I received a letter from the breast center strongly encouraging me to have the site biopsied triggering another outreach to my care team. This time I was informed my oncologist was on vacation and he would contact me on his return with a plan of action. One week ago, he suggested I have a double mastectomy. While radical, an approach that would eliminate local reoccurrence and greatly reduce instances of future metastasis. He spoke to a surgeon who isn’t onboard with this radical approach. She insisted I have a biopsy to determine medical need. Patients with Stage IV typically never have surgery. The goal is focusing on the metastatic disease, ensuring it’s controlled and in some cases (like mine) reversed. However, if there has been a reversal of metastatic disease, some surgeons will perform surgery to reduce potential local reoccurrence, etc. Today, I had a diagnostic ultrasound to determine the method of biopsy to be performed. Thankfully, we can proceed with the ultrasound guided method. After this test, the radiologist came to speak to me and informed me I will absolutely be having surgery. My tumor is still highly suspicious and suggestive of malignancy and creating problems in the future. The aggressiveness of the surgery will be determined by the biopsy results. A minimum, I will have a lumpectomy. Or, I could still be having a double mastectomy. My biopsy is scheduled for Monday. My results will take 7-10 days and then I will see the surgeon.

Finally, feelings and questions:

Shock, frustration and an overwhelming grief have taken over. How did we get here almost 3 years post diagnosis?!

Why didn’t we do this at the beginning?

Why didn’t anyone tell me CT scans weren’t monitoring my breast?

Why didn’t anyone tell me they saw this on my mammogram in November?

Why did I just assume treatment meant a systemic approach that included my breast?

What did I misinterpret from every appointment since diagnosis?

Did I lose the trust I had in my care team?

As I was getting changed for the ultrasound today, the mirror in the changing room had window clings. “Be Strong” with pink ribbons and hearts. All I thought was “again”.

[morethanmbc]

For as long as I have worked from home (years), I have used various set-up’s. None of which was an actual functioning desk. I am not sure how the heck I have managed this! I had purchased a desk when I restarted college and would work at it for two to three hours here or there. It wasn’t the best set-up, but it got me by.

When the pandemic hit and I was forced to work from home, I tried using my school set-up. It was awful. So, I swapped out the wooden folding chair I used for a proper office chair. I made a rookie mistake when I purchased the office chair and didn’t measure to ensure it would fit in the space I had well enough to function properly with the desk. Sitting at the desk was cramped. I couldn’t move the chair. I was stuck in one, uncomfortable position all day. Needless to say, I didn’t stick with it, and I didn’t seek out a new desk or chair. I guess I’ve had enough …

Two weeks ago, I ordered a new desk for my room that will provide me functioning desk space and allow use of my desk chair. The desk arrived earlier this week. On Wednesday, I was determined to get the old desk cleaned off. That meant boxing up all of the books that were on the desktop, because it was functioning as a giant shelf versus a desk. I also boxed up the office supplies, my monitor and the knickknacks. I dusted, I Clorox-wiped, I vacuumed. On Thursday, I stared at the empty desk ruefully. I could not undertake building the replacement until the weekend. So, I endured two more days of work sans desk. On Friday, I listed the old desk on a yard sale site. Today, I hauled it out of my room and downstairs. Then, I set out to build the new desk.

I methodically unpacked the contents of the box, labeled them, separated the pieces into groups based on which section they would build, ensured I had the appropriate hardware and tools, turned on The Black Parade and got to work. Two hours later, I rejoiced! I tested out the desk and space with the chair and it’s perfection! Both pieces of furniture are functional in the space!! I have a lot of organizing left to do, but I am so excited for Monday and to work from my new desk!

[morethanmbc]

In therapy, I speak a lot about my struggles with feeling like an option in the lives of those I consistently put before my own wants/needs. Yes, I realize part of this pain and hurt is my fault because I continue to show up, go above and beyond and love hard knowing it may not be reciprocated. I am aware that perhaps I over estimate my importance in the lives of others.

Since the “friendship breakup” I’ve been able to spend more time with a particular friend. We’ve been able to do things that suit both of our interests. We’re in a rhythm of communicating light heartedly, sharing wins and also when we need support. I connected with this person when we first met and it’s always been “easy”. I’ve truly been enjoying our interactions.

I do get worried though, that I’m too much. Because that is the narrative the other relationships and their interactions tend to provide. How many texts are too many? Can I send that meme even though I already sent one? What is complaining versus talking about my day and what’s happened? Is silence a sign that I’ve done something wrong? We saw each other last weekend, is it ok to ask to hang out again this weekend? These are just some of the thoughts that go through my head as I question every inch of my behavior in order to NOT be too much, or worse: a “burden”.

I guess I’m not giving myself enough grace or credit (why would I after the “friendship breakup”?) because yesterday, my friend shared with me such a heart warming post that solidified that this friendship has equal appreciation, commitment and love from both sides. My heart needed this reassurance. And I am grateful to have received it. Such a small act… sharing a post, but the result is so positive.

Thank you to my friend, for making me feel chosen.

[morethanmbc]

My therapist challenged me to do one thing this week to honor and choose myself. I’m challenging myself to make it two things— one tangible and one intangible.

The tangible item has been completed. I finally switched out my Kate Spade handbag for my trusty Travelon.

The idea for the intangible item was developed in therapy and is to maintain my boundaries. I can either have resentment and discomfort from my relationships for feeling second best or optional AND have conflict internally for allowing the behavior OR I can choose myself and communicate (or not, whatever is best for the situation) what creates discomfort and what won’t be accepted moving forward.

Drawing that hard line in the sand is difficult for me. As much as I like to think I stick up for myself, I also exhibit a lot of “keep the peace” behaviors (in certain relationships).

Here’s to continuing to do the work.

[morethanmbc]

[perfectfeelings]

“You were never created to feel depressed, unwanted, alone or ashamed. You were created to love and to be loved, and to feel that you are worthy and are valuable.”

— Unknown

[inkpressedpetals]