Dave & I left Elliott around 4 am this morning. We hopped off I-57 long enough to stop at Casey’s in Neoga. We continued through the little town of Sigel before we hopped back on the interstate. We enjoy reminiscing about who we know from the small towns from our 4-H House and Nabor House days at the University of Illinois. (Jane and Brad for the win today.)
Neoga, IL 5:40 am
My labs are looking good and we had a good appointment with my team.
Today is treatment 87. Amazing. Before #88 in 3 weeks I will have a brain MRI and visit radiation oncology, get a bone scan, and get a chest/ab/pelvic CT. It’s time to see if brain surgery, brain radiation, and the new chemo pills have knocked everything back into control again. I am still slowly weaning onto Capecitabine (Xeloda). It had better be working because the side effects are not fun.
We’ll get out of here in time today to get lunch at Blue City Deli. The weather is gorgeous today so I may be able to get a glimpse of the Budweiser Clydesdales today, too, as we pass the brewery to get to the deli. It’s been so hot this summer that they haven’t been outside when we have been here.
There are several trips to St Louis coming up with all these medical appointments. We will enjoy our time together and hope that the cancer is back in check again.
Saw my oncologist today and delivered a dozen Not Dead Yet cookies to her team for my 5th Cancerversary. Will start taking Xeloda again, slowly. Now preparing for Treatment 86. There are extreme heat warnings here in St Louis but it is nice and chilly in the chemo pod. We’ll grab lunch at Blues City Deli on our way out of town. We highly recommend it if you’re in St Louis.
By sharing my story, I hope to raise awareness about breast density and metastatic breast cancer. I am an ambassador for My Density Matters. Here is a link to their website. Click on my photo (photo credit to my daughter) to read my story:
I acknowledge your presence, Anger. I cannot pretend you aren’t here. Perhaps you need to sit down and say your piece, then sit a spell, so that, then, you can depart and allow your cousins Mercy and Grace, to take your place. I will not banish you or confine you to the cellar. Instead, I will pull up a chair and allow you to visit. But only a visit.
Today marks another year around the sun for me and I thrilled to be here. I slowly weaned back on Tucatinib and my body is tolerating it. Dave and I will go to Siteman Cancer Center on Wednesday to visit my oncologist and get Herceptin #86. I will also begin slowly weaning back on Capecitabine. These 3 drugs (Herceptin, Tucatinib and Capecitabine) are part of a clinical study called HER2CLIMB, a study that did not exist when I was diagnosed 5 years and 3 days ago. Funding metastatic breast cancer research keeps me alive.
On Saturday, October 12 I will be participating in the Be a Hero Fun Run in Plainfield, IL. If you are in the Chicago area, join me for a fun day raising awareness and money for metastatic breast cancer research.
On Sunday, October 13 – National Metastatic Breast Cancer Day – I will sharing my story on a live virtual broadcast for #LightUpMBC. I will be standing in front of State Farm Center in Champaign, which will be lit up in the colors of the metastatic breast cancer ribbon – teal, green and pink.
Every single day in July now holds specific traumatic memories. I know what I was wearing. I can see and smell and hear those days. I can see the faces of those around me trying to process my new truth of Metastatic Breast Cancer.
I cannot – absolutely cannot – enter the exam room at my local doctor office where I heard, “There is never an easy way to say this.” I clenched Dave’s hand to keep from falling into the abyss.
I hate July.
I’ve spent this month the same way I’ve spent the last 5 years – clenching tightly to Dave’s hand. My two besties since 7th grade, Malinda and Kathy, have been keeping close tabs on me, too, because they understand how hard it has been to hold myself together. Just a few days left…
Today Dave and I delivered Not Dead Yet cookies to some special people. I’m grateful to my friend, Michelle Brucker, at Sweet Kreation in Gibson City, IL, for providing the delicious and beautiful cookies! She used the colors of the Metastatic Breast Cancer ribbon – pink, teal, green. It was my way of shifting my focus today to people who help me.
Now it is evening and Dave has left for work and I’m finally alone with my thoughts.
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.
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.
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.
My extraordinary oncologist, Dr BisiI need one of these cardboard cut outs at home. Love the window art. I haven’t been home to see these yet. My thanks to our anonymous friends. My kids send me photos of Indie and Madi. I miss them.
I am not in control. 