Support For Autumn: Stage 4 TNBC Breast Cancer

Background: On Valentine’s Day 2023, I met with my primary doctor to discuss/investigate a tumor that I had found in my left breast. Through testing/scans in February and March, it was revealed that I had Stage 4 Triple Negative Breast Cancer (TNBC).

Prior to this time, I had no other physical symptoms---no pain, no discomfort, etc. In fact, I was still working out regularly, taking my dog on daily walks at a local park, and hiking with one of the women’s groups I was a part of: Girls Who Hike Ohio and HikerBabes.

As I moved even through even the initial mammography, biopsy, and scans I was in almost immediate and excruciating pain in my ribs/back. It was pain that was not even successfully managed until May, even with the request for physical therapy and reiteration of my level of pain.

This changed my life almost 180 degrees very early on in the process to a degree I believe could have been prevented/managed more successfully early on without the need of having to experience and deal with what I did along the way.

I posted a highlight of my journey up to this point in the ‘Updates’ section.

Diagnosis/Prognosis: Stage 4 Triple Negative Breast Cancer (TNBC). With my diagnosis (Stage 4), my cancer is considered to possibly be treated/manageable. The oncologist indicated that the medical team will do their best to collaborate to offer the best treatment possible, but there are no guarantees. TNBC means that I'm estrogen receptor (ER) negative, progesterone receptor (PR) negative, HER2 negative.

Through genetic testing, I learned that I was positive for a BRCA1 mutation. I was tested for a total of 77 genetic markers for various types of cancer.

TNBC has the least treatment options available as far as chemotherapy/other medications. Because the tumor has continued to push itself out of my breast, other factors, and the interruption in treatment early on, the oncologist is uncertain how well the initial chemotherapy treatments were. Treatment plans have also changed several times as new information was discovered.

Current State of My Condition/Current Sites of Cancer Confirmed: Based on the most recent scans these are the confirmed cancer sites: left breast, axillary lymph node (L), lungs, liver, 8th & 10th ribs (L), breast bone, between the 5th and 6th vertebrae. This location is directly associated with the limited movement of the corresponding areas of my shoulders/arms that are currently not functioning properly.

Additionally, I have an undetermined lesion on my brain that will evaluate through an MRI in July.

I also had a tumor removed from my thoracic spine via a 6+ hr surgery in May. A tumor wrapped around the spine and damaging the vertebrae was removed, the disc repaired, and a T6-10 spinal fusion was successfully completed.

As for my current physical state, I am experiencing a good deal of cervical kyphosis (head/neck pushing forward. My arms are not functional to the degree that I can complete any small or large daily activities/hygiene/eating without almost all assistance. There is some weakness in my legs due to the amount of time I was on bed rest while in my most recent hospital stay. I am now on oxygen and have a painful rash on my bottom, believed to be from materials used in the hospital.

Additionally, I am still battling nausea---one of the side effects of radiation. Thankfully, the painful swallowing and acid reflux have subsided.

I am still managing the struggle with lymphedema in my ankles, but my oncologist prescribed Lasix and we began wrapping my legs to alleviate this problem.

I have also had an elevated heart rate over the last few weeks. After several tests, they are unable to find a direct cause/get it lowered to a more normal rate.

Caregivers: My primary caregivers in this process have been my mother and father who are 70 and 82, respectively. My mother has taken on the role of primary caregiver. Some of you may know that my mom had a ruptured brain aneurysm on Mother's Day 2016.

While her body has healed, the progressive amount of assistance I'm needing has become physically and emotionally taxing on her. This includes lack of sleep as I need assistance with medication, some administration being done during normal sleeping hours, full assistance with getting out of bed to use the restroom during the night, full assistance with bathing, eating, blowing my nose, changing clothes, wiping my eyes, and a host of other activities due to the limited mobility in my shoulders, deltoids, and biceps.

Most recently, there is additional struggle and frustration with the daily changing of my breast bandage. Before my most recent hospital stay, I was approved for nursing services 1x per week. Right now the initial indication is that will not change. Due to the addition of blood thinners to my medications to prevent any future clots and my inability to ambulate my left arm, the amount of bleeding/struggle during this transition has been overwhelming.

I'm hoping to be able to bring in a private nurse for a period of time until I can get approval for more (daily) nursing services for dressing changes to be included.

Additionally, I'm the guardian and caregiver for an adult sibling with special needs. More recently during times he has not had other staff, my parents have brought him over to assist him with meals, other needs, etc. They have also taken over the primary care/feeding of my Labraheeler--Barrett as my physical state has declined.

It seems like a 24/7 caregiving role for them, a burden that I feel awful that they have to carry.

Asks From Family/Friends: Since my announcements to extended family/close friends at the beginning of April and announcements to other friends at the beginning of May, I have had an outpouring of people asking what they could do to help---and I honestly couldn't give them a solid answer.

It's always been hard for me to ask for help. I'm generally the one doing the caregiving and not doing enough caregiving for myself. During this stage of this process, I can see the various areas in which I could use assistance.

This comes thru the struggles I've experienced, seeing how the journey has impacted my parents, the decline of my body with no frame of time in which I'll have restore movement in my arms, being unable to work with no anticipated date of being able to return, more than $10,000 in medical bills so far (with an estimated 2.5x more in the next 12 months), additional therapies/services/adaptive tive equipment insurance will not cover, along with hiring outside services temporarily while I wait for insurance to cover them, I knew that I needed to be more proactive and specific about asking for help.

Website: http://autumnstnbcjourney.com/

Due to my limited arm mobility, the initial phase of this website will include asks outside of financial donations. The purpose of the asks is to alleviate some of the burden from my parents. This will include rides to some appointments a lot of which are in Perrysburg or Toledo, dropping off family-style meals, sending cards of encouragement, care packages, etc.

The later phases will include research on TNBC and what I can do to best support myself holistically (mind, body, spirit). I had hoped to do this much earlier on, but due to the rapid changes and abrupt complications/decline of my physical body, I have not gotten very far in this process.

I will post updates as each phase is completed.

Thanks: I wanted to say ‘Thank You ‘to all of those who have supported me up to this point in the process. First of all, to my parents. This also includes all of the prayers/encouragement, cards, in-home visits, text/phone calls to check in, and the various ways you have supported me and my family. It has been greatly appreciated.

To those who will contribute, share my GoFundMe link, reach out in other ways of support, or pray for me, please know how grateful I will be for any contributions. This includes any contributions over my set goal as I believe this might be a bit conservative.

Thank you in advance for reading my story and for all of your support.

Autumn