Six Stars Tattoo for Six Years Living with Metastatic Breast Cancer
On July 10, 2019 I found a lump in my right breast. Seventeen days later, July 24, 2019, I was told that I had breast cancer that had already spread to my bones, liver and adrenal gland. This came after 9 years of annual mammograms that were “not positive for cancer.” My most recent was 9 months before I found the lump. In 2020, the breast cancer spread to my brain.
I have received radiation for the tumor on my adrenal gland and one in my shoulder bone. I received five rounds of SRS (radiation) to my brain. I have infusion treatments every three weeks and will for the remainder of my life. I have had three rounds of gamma knife to brain tumors and recently had laser ablation of the newest brain tumor – my 12th one.
Since my diagnosis I have learned that I have extremely dense breast tissue that makes it much harder to see breast cancer on a mammogram AND is a significant risk factor for developing breast cancer. A person with dense breast tissue has a 60% higher risk for developing breast cancer than a person without dense breast tissue.. How I wish I had known this before my diagnosis. I had never heard of breast density and didn’t know I should have been receiving additional screenings each year in addition to my mammogram.
Did you know that there are scarce resources dedicated to researching Metastatic Breast Cancer?
I am raising money for METAvivor because 100% of their funds go to researching Metastatic Breast Cancer – the only breast cancer that kills. I need research to find new treatments to extend my life.
July 24, 2025 will be the sixth anniversary of my Metastatic Breast Cancer diagnosis. July 10, 2019 was the day I found the lump. The days in between that and the horrible diagnosis are etched in my memory. July is a difficult month for me. I have not felt like blogging for a long time. This is what my body has been through so far:
Treatments: 102
Gamma Knife Procedure: 3
Brain Radiation SRS: 5 rounds
Adrenal Gland Radiation: 5 rounds
Shoulder Radiation: 1 round
Spine Surgery: 1
LITT to remove a brain tumor: 1
Brain MRIs: 17
Whole Body Bone Scans: 14
Chest/Ab/Pelvic CT Scans: 19
Echocardiograms: 9
Heart MRIs: 9
Breast MRI: 1
Complete Spinal MRI: 1
Thoracentesis to drain fluid from my lung: 2
Hospitalizations: three
This was a photo from treatment 102. Next Tuesday, July 22, will be #103. It has been a whole year since I had a new brain tumor – a record for me. Along with my infusions every 3 weeks, I take 2 oral chemo pills morning and night. They are not kind to my digestive system, but they are manageable, especially since it seems to be working. I am an ambassador for #LightUpMBC again. We raise money for Metavivor for metastatic breast cancer research. This is even more important now that the controlling political party has slashed billions from cancer research through the NIH with the support of every voter who helped to elect them. My fundraising page can be found here:
I am grateful for those of you who have reached out to me while my blog was on hiatus. It means a lot to me. The painted rocks seen in photo at the top of this blog were a special gift from 3 people who know just how to add smiles to my day. Some of you even keep up with my treatment days (still every 3 weeks and still on Tuesdays). A little text or email to let me know you are thinking of me really brightens up those days. I am really tired of dealing with Stage IV cancer every day. Grief over that and missing my mom seep into all aspects of my life. Most days I still have the urge to pick up the phone and call Mom, to share something exciting or something that scares me. I carry her with me in my heart always. I appreciate any shares of this site, as I am still taking a huge step back from social media. You can also sign up to receive new blog posts via email.
I leave you with my new mantra: You don’t have to like it or want it or approve of it. Simply allow it to be there – because it already is.
I am still battling Hand Foot Syndrome (HFS). My oncologist told me to take a week off Capecitabine and then restart at a lower dose. At the one week mark, my symptoms were still bad, so I was told to wait another week. That was Wednesday. My symptoms were still troubling but somewhat tolerable and I know I need this drug, so I started back. The HFS started becoming worse again Thursday evening. My toes really hurt today and I have another finger with a deep crack in it. I am determined to take it until next Wednesday (11/13) I have treatment 91 and the chemo infusion nurses will send my symptoms to my oncologist for review. But, of course, that will be the day I begin a glorious week OFF capecitabine. I am really struggling emotionally with the foot pain and not being able to walk for extended periods of time. Walking is so good for my physical and mental health and I miss it. I could not play the piano for church last week but should be able to get through it this Sunday. I’ve practiced most days this week and it is good to spend time thinking and praying through music.
December 2 will be a long day at Barnes. I have a brain MRI at 8 am and see my radiation oncologist for the preliminary results a couple hours later. It is wonderful that they do not make me wait long. Then I see my oncologist and have treatment 92. Dave and I will be at Barnes (main campus) from 7:30 am until around 4:00. So we will leave home around 3:30 am and get back home to the farm around 8:00 pm. We try to get things scheduled like this (in one long day) to save gas money and to avoid hotel expenses. It gets difficult, but driving up the lane as we get home is such an amazing feeling. For me, there is no place like home. In September I had my first clear brain scan since 2020. Here’s hoping for the second one in December.
Urge Your Representative to Cosponsor the Metastatic Breast Cancer Access to Care Act The Metastatic Breast Cancer Access to Care Act would amend the Social Security Act to eliminate waiting periods for social security disability insurance benefits (SSDI) and Medicare coverage for eligible individuals with metastatic breast cancer. Under current law, a person with metastatic breast cancer must wait five months after applying for Social Security Disability benefits to begin receiving those payments. Also, that person must wait an additional 24 months after disability benefits begin before receiving Medicare insurance coverage. This delay creates obvious hardships for people with metastatic breast cancer as they struggle to pay medical expenses. This delay also ensures that many people with MBC are unable to collect the benefits they paid into the system because of their reduced lifespan, currently averaging 33 months after diagnosis.
This delay affected me personally and caused financial hardship. I had to live without a paycheck for 5 months before my disability began. I struggled to continue working my job to delay those five months for as long as I could. I had help from some friends and family members to help us get by those five months, but we still used up all our savings. I want to help those facing the same diagnosis to not also have to fear financial ruin. Please help me in this fight.
You will be asked to fill in your address and zip code. From that info it will identify who your elected officials are in a new page. After you see this information, hit the back button to return to the first page and select the purple “Take Action” button. This will take you to a page that has form letters already written to your elected officials. You can modify the text if you want using the “edit messages” button on the left.
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 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.
I am not in control. 