JODI’S JOURNEY TO DATE

A year and a half ago I started my journey navigating the Spanish Dancer.  

In a nutshell, I was diagnosed HER2+ HOR – stage IV MBC (Metastatic Breast Cancer). It had metastasized to 62 total spots: my brain (3) spots – bones, kidneys, lungs, lymph nodes, liver, left neck, bilateral axilla, upper abdomen.

At this time, I am a miracle walking – I am NED (no evidence of disease). It’s called being “stable” (like a weeble wobble) and I am very, very grateful!

I look good and feel good, but behind the scenes it is still a continual battle to keep my spirits high as I continue to have infusions every 3 weeks and a shot for my bones to navigate the stage IV breast cancer diagnosis.  I also get scans every 3 months along with a gauntlet of appointments, hopefully confirming there is no progression.

Here’s my story:

July 2023

I ignored a lump for almost a year and it eventually ulcerated, so I went in.

I was diagnosed and after a whirlwind couple of weeks, I started chemo on August 8^th, 14 days later. That’s also the day I quit drinking cold turkey.

I did 16 rounds of chemo (once a week every Friday for 3 months) and had 2 hits of gamma cyberknife radiation to my brain.

November 2023

As I mentioned, I am a “miracle” – I showed NED on my November scans – reminder: I had 62 spots in my body and 3 spots in my brain!

I was so excited, except for the reality of what the chemo and my new friend - chronic lymphedema - had done to my body.  I had no hair of course, I had a third degree burn on my hand, and I could not have any part of my skin in the sun afraid it would happen to other parts of my body.  My finger and toenails separated from the beds – so I wore band aids on 6 of my 10 fingers for six months until they healed. Not to mention the neuropathy, and the fatigue from my red and white blood cell at concerning levels.

And the kicker was that at that same time, appointment Dr. Harb my oncologist said that I would be continuing the immunotherapy and targeted therapy indefinitely.  That was almost harder to digest than “YOU HAVE CANCER.”  Indefinitely means forever. I know it keeps me alive and I am grateful, but having a foreign substance drip through your body every 3 weeks through a porta-cath (the vessel on my chest to drip the medicine in my veins) is a lot to deal with. It was a lot to digest.

January 2024

There was an uptake around the original spot in my left breast, so down the mastectomy journey I went. I was recommended to an amazing surgeon (Dr. Guerra you are the best!).

As I was trying to schedule my surgery (one boob, two boobs, new boobs no boobs). I had to jump ship from my 8-year relationship. Sadly when you add the trauma of the Spanish Dancer to an already unhealthy relationship - let’s just say it is time to get out.  So I moved to my mom’s house – yep, 53 years old with stage IV breast cancer living with mom. I was grateful, but itwas a hard pill to swallow at the same time.

April 2024

I had Thelma and Louise “jump off a cliff” moment and joined the little bitty titty committee.  What a journey of healing that was. Drains and wraps for two and a half months without being able to put my arms over my head or drive, with 15-30 appointments per month.  I am still working on the physical therapy for my left arm along with the chronic lymphedema.

June 2024

NED again! Yay!

October 2024

NED in my body!Yay!

My brain was another story.  They found a 5.5mm spot in my brain.  It really freaked me out.  My mind and my body went into shut-down the day I “read” the results for my scans. My oncologist Dr. Harb and radiation oncologist Dr. Wei speculated it was scar tissue from the original tumor. I was numb and could not really speak until I spoke with Dr. Harb and he said it was not a problem – stay tuned. This is my brain we are talking about!

I was rescanned in November and it came back as “no progression.”  Praying it would be the same on my January scans.

Let’s not forget the mental journey! Integrated oncology put me at about 20-30 appointments a month. I am in numerous groups: art therapy, therapy, social interactions, retreats, and anything that I can do to help in the healing and create a community for myself.

I won’t go into more details it is kind of CRAZY and people can’t fully grasp it.  Having the Spanish dancer is one thing, but MBC is entirely different life to navigate. I wish I could ring the bell. 😊

February 2025

NED again – in my body! Yay!

Now there are 2 spots in my brain. Doctors think it is scar tissue, but they are “watching it.” Just an FYI, the words “watching it” don’t sound like great words when it comes to the Spanish Dancer.  

May 2025

PET scan, Brain MRI, Echogram, Oncologist, Radiation Oncologist, Breast Surgeon andOphthalmologist  This does not take inconsideration by ongoing appointments – infusions, blood draws, PT, Bone Shot -I think you get the gist. I live in a doctor’s office!

Then there is the lymphedema in my arm – and it’s here to stay. There has been talk of possibly going in and redirecting my lymphatic system to see if it will help. In the meantime, I am doing my best to manage it. I still go to physical therapy once a week –down from 2 times a week, have it wrapped 3 to 4 days a week (thanks mom!). I have come to the realization that I will be in a sleeve  for the rest of my life unless there is a miracle. YES! I am definitely praying for this. This is that darn “new normal.”😊

Let’s just say there is more than meets the eye when it comes to working while navigating this disease – like the financial aspects. Right now my profession is focusing on my health and staying alive.  Thankful and grateful for all that have helped during the diagnosis and the mastectomy – but sadly stage IV is a terminal illness and I will have 20 appointments this month – would you hire me? And whatever money I do make will just go to medical bills.

Then there’s the mental and emotional side of the disease – the silent thing no one sees: PTSD. I have been working really hard not to go onto medication for the depression, anxiety, and downright anger and fear.  I quit drinking so I went through all of this with a clear head.  If you are part of my journey sometimes I fall apart - thanks to those who are there for me!

Yes I can tell you there is a lot to get through all of the above – I am living proof.  If you are battling this crazy disease reach out! Get into groups, ask for help, ask for prayers – you are not alone.  If you are a caregiver or a friend helping someone through this – you are a wonderful human being.  We need you, but it is so humbling to ask.

I am so thankful for my mom, family, friends a home to stay and of course all of my doctors- including all the 70+ people taking care of me and keeping going on this journey.

The fact is - stats are hard. It is the reality – but it’s getting better.

The 5-year survival rate for stage 4 metastatic breast cancer is approximately 31%,meaning 31% of individuals diagnosed with metastatic breast cancer are expected to live at least five years after diagnosis.  I know I will be the exception, but I can now look at this and be okay with it. And fortunately, I have met many in the community that are living beyond 5 years! 😊

Loads of Love,

Jodi

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