Things You Need to Know that I Wish I Had

Five years ago today on 7/17/2019 I had a diagnostic mammogram and an ultrasound of my right breast. This was ordered after I found a lump on 7/10/2019 and my primary care doctor confirmed my findings on 7/12/2019.

Make the effort to view the actual reports from the tests you have.

Many health care facilities will send you a letter or you may receive a phone call from your doctor’s office telling you that your tests were “just fine.” This is what we all want to hear so we typically do not take the time to go online to our medical charts to view the actual reported results. Review the actual report with your doctor and ask questions if you do not understand what it says. You must be your own heath advocate.

You must know your breast density.

On 10/11/2018 I had an annual mammogram at my local hospital. The radiology report indicates that I had multiple prior studies dating back to 8/13/2009.

FINDINGS: A moderate to large amount of heterogeneously dense tissue is again detected bilaterally which limits the sensitivity of the exam. There were no speculated masses. No suspicious microcalcifications. No evidence of architectural distortion. A few coarse calcifications are noted bilaterally. There were no significant changes.

IMPRESSION: No mammography evidence of malignancy. Recommended routine follow up. BIRADS Category II – Benign Findings.

Mammography reports were required to indicate breast density beginning 1/1/2019 – –horribly bad timing for me. This report mentions the breast density casually but did not assign a level to the density or indicate what should be done depending on the level of density. There is no way to know for sure, but my oncologist believes my cancer began at least as far back as 2017 given how widely it had spread when it was discovered. I was getting annual mammograms, but my breast tissue was far too dense for cancer to be detected on a mammogram. You must be your own health advocate.

You must know what to do if you have dense breast tissue.

The radiology report from my diagnostic mammogram showed “a vague density at about the 1 o’clock position.” This report, though, finally assigned a level to my breast density: “d – The breasts are extremely dense, which lowers the sensitivity of mammography.” BIRADS Category IV – Suspicious Abnormality.

The ultrasound report from that day found “a lobulated mass at the 1 o’clock position” that measures 2.4 cm in greatest diameter.

Two weeks later a breast MRI, the best scan available for detecting breast cancer, showed the reality: A 3.5 cm tumor in my right breast that had tentacles like a spider that reached clear through my right breast. A diagnostic mammogram only showed “a vague density.”

If your mammogram report indicates that you have heterogeneously dense or extremely dense breast tissue, you need further screening. A study from Myriad Genetics shows that 44% of women do not understand breast density and 63% of women do not know there is a connection between breast density and cancer risk. Until August 2019 I did not understand breast density and did not know there was a connection between breast density and cancer risk. Now I have Metatstic Breast Cancer (Stage IV) that has spread to my bones, liver, adrenal gland and brain. Breast cancer in early stages is treatable. My cancer is terminal. You must be your own heath advocate.

I spent some time being horribly angry and feeling betrayed by the health care system. I did everything I knew to do at the time, which was annual mammograms. The only way I can see my way through the anger is to passionately advocate for increased awareness of breast density and the increased risk of cancer associated with it AND to passionately advocate for more research to find a cure for Metastatic Breast Cancer, the only kind of breast cancer that kills and the cancer that kills 114 people every single day.

I am an ambassador for 2 organizations: My Density Matters and LightUpMBC. Go to https://mydensitymatters.org to learn about breast density and the screening necessary. Please consider donating to my fundraising page for LightUpMBC: https://donate.metavivor.org/fundraiser/5554408. All proceeds go to funding MBC research grants through Metavivor.

The Day I Found a Lump – and Why Breast Self Exams are Important

July 10, 2019 was a “normal” day. I was busy at work preparing for the fiscal year end audit. I was preparing for my first 10k so I took to the country roads after getting home from work. I felt great and jogged a whole 10K for the first time. I was so proud – and so sweaty. I jumped in the shower when I returned home. That is when I felt a lump in my right breast.

Waiting for Treatment #85

Medical experts debate the value of breast self exams. Many well known medical organizations including the American Cancer Society do not recommend them anymore. I cannot emphasize this enough:

I found my breast cancer when years of annual mammograms did not. A breast self exam is part of the reason why I am still alive today.

I had annual mammograms at a local hospital for 9 years before my diagnosis with Stage IV Breast Cancer. Those mammograms did not detect my breast cancer. A mere 9 months before my MBC diagnosis, my mammogram did not detect cancer. My oncologist told me the cancer had been growing and spreading for at least 2 years. That means at least 2 mammograms did not detect the cancer.

Today I am at Siteman Cancer Center South County. I had blood tests and saw my oncologist. I am starting back on 1 of the new chemo pills on a gradual basis to see if I can tolerate it with medication for the side effects, I am in the chemo pod waiting for treatment #85.

If I Could Turn Back Time

July is the month of hard anniversaries. It is a month I wish I could just skip. But I cannot. Instead, I plan to find some purpose in my journey by educating you so you and the people you love do not find yourself walking in my Metastatic Breast Cancer shoes.

July 9, 2019 was the last day I experienced without the fear of cancer. Now we know that I already had breast cancer that had spread to my bones, liver and adrenal gland. But on that day, I was blissfully unaware. I ache for that lost happiness. I find relief in sharing my story so that other people will do the following: perform monthly breast self exams, get annual mammograms beginning no later than age 40 (earlier if you are high risk),know your breast density, know what screenings you need if you have dense breast tissue, know what Metastatic Breast Cancer is and why we need more research done to cure the only breast cancer that kills.

I am an Ambassador for #LightUpMBC. I am working to secure buildings to be lit in the MBC colors (teal, green, pink) on October 13, 2024 – National Metastatic Breast Cancer Day. I am in contact with State Farm Center on the campus of University of Illinois, my alma mater. If you have other ideas for buildings and landmarks with color changing LED lighting, please let me know. All proceeds from the #LightUpMBC campaign go to Metavivor to fund research grants. Your donation might be the one that funds research that finds a cure for me before time runs out.

https://donate.metavivor.org/fundraiser/5554408

R & R

I’m getting some R & R at Barnes Hospital in St Louis. I’ve had 12 days of digestive revolt. My local health care interpreted some tests to think I had C Diff. Further tests down here show I do not and that is a relief. They still believe it all to be related to treatment. I will be here until they can get it under control.

No Bells

Today was the last of 5 radiation treatments to my brain. I do not plan on driving more than 5 miles from home (the distance to town) until I return to Barnes next week. The techs administering my radiation asked if I had a celebration planned since this was my last treatment. I laughed. (They meant well, didn’t know the extent of my cancer, and apologized). I’ve seen lots of people ring bells this week in the waiting room (to celebrate end of radiation) and I clap and cheer and truly wish them the best. For Stage 4, there is no end of treatment. Next week I will return to Barnes to see my oncologist and receive treatment in the chemo pod.

I took the 2 new chemo pills for a week and half and am taking a break to allow my body to rest from the brutal effect they had on me. I lost more than 6 pounds in 10 days. Not fun. In a week or 2 I will start back on just 1 of the pills to try to determine which one is the main culprit.

Getting By

Today was my third round of radiation to my brain. I come back Monday and Tuesday next week. The side effucks from the new oral treatment meds continue – diarrhea, nausea, mouth sore and fatigue. I’m picking up a prescription mouth rinse today down here that should help with all the blisters inside my mouth.

My ride down in the truck with Dave was productive. I found an additional part time care giver for my mom. I am so relieved! My mom had a procedure at the local hospital and a cousin handled that instead of me. Bonus points for my cousin! We are repairing a waterway and dam and adding an additional waterway on the farm and that project should begin mid-July. I believe we are charged with being good stewards of nature.

My oasis got some boards and a fresh coat of paint. I’m hoping Dave can find someone to help get the furniture back on it tomorrow so I can get back to enjoying my peaceful place of healing. I guess I’m in my bold color phase of life. Green seems to fit an old farmhouse.

D is For

1. DELAY

My radiation treatments will begin on Wednesday instead of Monday. This means I will have treatments Wednesday through Friday and then Monday and Tuesday. My treatments are in the afternoon so Dave will be able to drive me down and back and have time to get to work. He just won’t get to sleep much on those days. It will be nice to have a break over the weekend.

2. DAD’s DAY

My dad was a farmer his whole life other than his time in the Air Force. He wore bib overalls and sported a flat top – a true, squared up one thanks to his hairdresser spouse. He had an amazing dry sense of humor. He only wanted the best for me. There are daily reminders of him on the farm.

April 2013

3. DIARRHEA (AND NAUSEA)

I began my second line of treatment on Tuesday with 2 oral drugs. I was warned of the side effects (side effucks as they are called in the cancer world) and they were not joking. I have prescription medicine to try to manage them. I’m hoping my body will adjust somewhat to them.

4. DISCIPLE

I was able to attend church this morning and it was so wonderful to be back. I am a disciple – a follower of Jesus. I am a member of Uniplace Christian Church in Champaign, a member of the Disciples of Christ Denomination. We are an open and affirming church. Check out this link to our website. (I’m also one of several people in the cover photo.)

https://www.uniplace.org/

5. DAVE

Happy Father’s Day to my life partner, Dave. He truly lives the “in sickness and health” part of our wedding vows to the fullest. He was with me when I was diagnosed and has been with me to the majority of my scans, treatments, and appointments. I could not still be here today without his support and his love. He is always looking out for me.