INVASIVE DUCTAL CARCINOMA

1/6/23:

My dog pulled me into a tree and I hit it with my head & (R) collar bone. I lost consciousness for less than 10 seconds. My body slammed on the frozen ground and I developed significant neck and body pain.

Later that night, I attempted to stand and fainted, falling face-first, onto the hardwood floor. I developed a massive egg over my (R) eyebrow.

1/9/23:

Imaging of my shoulder and wrist appeared normal. No MRI was performed. I reported back to my NP.

1/25/23:

The injury appeared to cause spasms from head to toe, mainly in the back/abdomen/face/hands. UMMC has records of this ER trip. They wanted to admit me but not let Tim stay with me.

1/27/23:

Returned to the ER with worsening symptoms.

1/29/23:

Saw my NP who must not have read the notes from 1/25/23 where they did a massive workup that showed body trauma from the tree injury on 1/6/23.

I was started on anxiety meds because suddenly I was agitated, falling, and fearful. I was treated like a psych patient, not a patient with two head injuries.

From March until July, I tried to manage unrelenting pain. I was also in the ER so many times I lost track. I lost faith. I am autistic so explaining myself when I’m doubled over is next to impossible.

I also was losing weight, pacing nonstop, and could not stop rubbing my collar bones. I had such breast pain that I felt embarrassed constantly having to massage myself.

In July 2023, I demanded my NP reorder a mammogram because a lump that I had a mammogram for on 5/2022 had moved or grown. It turns out that the lump *I* felt was actually a severe spasm in my pec minor that was worsening with whatever condition got unlocked from the head injury on 1/6/23.

During the spring & summer of 2023, my NP was treating my anxiety & muscle spasms, but ordered no more imaging. I had an allergy to one of the medications. I was VERY foggy and on high doses of steroids to try to decrease the inflammation. It was breaking my mind and ability to sleep or find rest.

7/26/23:

My body was so compressed from the tree injury that caused Complex Regional Pain Syndrome, my rib cage went from 34″ to 28″ and my facial bones felt like they were shifting. I could see the vein on the side of my temple and it felt like the cartilage in my nose was collapsing. Negative facial x-ray on 7/26/23.

By the end of that month, I was so confused, only my husband spoke to the PCP in charge of my NP. She was on vacation. I was told to leave the practice because I was “unhappy” with their care. I had to urgently find a PCP and went to Patient First (urgent care) so my medical records were safe.

8/2/23:

Mammogram completed, showing a distortion requiring biopsy.

8/20/23:

I found a new PCP who looked at me seriously. She believed I qualified for all of the major clinical manifestations of Relapsing Polychondritis. My trachea, ears, and other areas were impacted, making her diagnosis sound. She started me on Prednisone 50 mg/day and eventually added a benzodiazepine to the Prednisone because it made me an emotional rage monster.

9/6/23:

Pain Management was started. This included neck and hip injections of cortisone. Meds ordered were Gabapentin (for “sudden onset” Raynaud’s Phenomenon), Methocarbamol (muscle relaxer), Oxycodone (Opiate), and eventually Morphine 15 mg twice a day. Pain management is a monthly appointment.

9/28/23:

Biopsy performed.

9/29/23:

Bariatric surgeon at GBMC insisted I had a hernia & performed laparoscopic surgery. No hernia was found, but no intussusception was found then OR when it was also seen at Penn during my allergy to chemotherapy.

10/2/23:

I met with a rheumatologist (Dr. Hosny in Wilmington, DE) who ordered basic lab panels and took me down off of a 50 mg/day steroid dose to none. This took a few months. Off of steroids, I felt significantly less agitated, but my pain was becoming out of control.

Rheumatology said, “It sounds like either Complex Regional Pain Syndrome or Hypermobile Ehler’s Danlos Syndrome. I do not treat either. Best of luck.”

I jumped right into cancer-land so that had to have a pin put in it.

Before I put a pin in it, I saw ENT, Pulmonology, and Rothman Orthopaedics in Philly. I wanted to know if I had 5-8 years to live. I was terrified.

10/5/23:

Biopsy confirmed Invasive Ductal Carcinoma in (L) breast. Stage 1, but with an oncotype of 27% so I had to do chemotherapy before radiation.

I interviewed a local hospital, but had to factor in my Pectus Excavatum birth defect so I knew Penn’s Proton Radiation was for me. I hoped that by going directly to Penn Medical, I’d have fewer hoops to jump through to qualify for Proton.

11/15/23:

I had a partial mastectomy with clean margins.

12/29/23:

Chemo First Round. No nausea. All hair fell out by 1/16/23. 10/10 Skin pain, and neuropathy in my fingers was so bad, I couldn’t type.

1/19/23:

Chemo Second Round. This round was almost immediately different. My legs felt heavy. I began swelling in my face and throat and knew I was experiencing anaphylaxis. I was also 10 lbs heavier than I was when I started chemotherapy. I was in trouble.

1/21/23: I was admitted to Penn for six days for an allergy to taxanes. At first, we didn’t know if it was a taxane allergy or an allergy to Neulasta. The other chemotherapy option that didn’t include taxanes, was too similar to the regimen I was on so that wasn’t an option.

My oncoptype score was 27% and I felt grief that I wasn’t able to give myself more of a protective barrier than I could have if I had finished all the rounds ordered. I had to get over that.

My hands almost split open from compartment syndrome. Chemotherapy was killing me, so it was no longer a benefit. I now have half-fingernails because they peeled off from the top down. I still have complications from chemo. I still suffer brain-fog, feel slower cognitively, and now have scar tissue from multiple surgeries.

4/15 – 5/13:

PROTON Radiation begins. Burns do not appear until the end of week 1. Total exhaustion followed. I slept most of the month. My allergist was actively working with radiology until I was placed in the care of Dr. White in endocrinology.

She and I both believe that I have an underlying autoimmune condition that either emerged when I hit the tree in January of 2023 OR just happened to be horrific timing and had to be dealt with SIMULTANEOUSLY during cancer treatments.

I see a Penn rheumatologist in September, but am hoping to be seen sooner. I have nodules all over my skin and I feel like my muscles become stone if I stop massaging them.

I have been on a hydrocortisone taper since radiation because my adrenal system isn’t functioning. My last Cortisol draw was 1.2.

No matter what; I WILL NOT QUIT.