I was blessed with a large extended family as a child. I was one of 13 grandchildren on one side and 11 on the other side. Holidays were loud and fun. I was especially close to my mom’s two sisters. My mom and I are especially close but I also knew that I could go to my aunts for anything. Before COVID-19 restrictions, I enjoyed regular gatherings at a coffee shop with my mom, one surviving aunt, and several cousins. While we cannot gather now, we do porch visits and frequently communicate with each other.

I am also blessed with some exceptional friends. There are three that I message every day, multiple times. They are the ones I can reach in the middle of the night. They know how much I love them They are my people. They are my family, too.

The concept of family has changed since I was a child. People are less likely to live close to extended family. Families are smaller. This has resulted in a different definition of family for my kids than I had. This is one of my fears with my diagnosis. They don’t have the buffer of extended family. They do, however, have an exceptional dad who will do anything for them and will do his very best to be all the family they need. They have my mom, who has an amazingly close relationship with each of them.

People often ask me what they can do for me now as I face cancer. The best thing anyone can do to help me is to act as family to my kids. I am positive it is much easier for me to have terminal cancer than it is for my kids to deal with their mom having terminal cancer. Just as my best friends are my family, I want my kids to find people who will be their family, their go-to people, their support network.

Do you know if you have dense breasts? Depending on the state in which you live, your mammogram report might include the classification of the density of your breast tissue. I live in Illinois where, beginning 1/1/2019, mammogram reports are required to list breast density. My last mammogram before my de novo MBC diagnosis was in October 2018. The radiologist included density in the report even though it was not yet required. There are four categories. Some states list them 1-4 while others use A-D. 1/A is fatty. 2/B is scattered fibroglandular density. 3/C is heterogenous density. 4/D is extremely dense. My classification was 4/D. The image above on the right shows what dense breast tissue looks like on a mammogram. Dense breast tissue appears white; so do breast tumors. Having dense breast tissue also dramatically increases your risk for breast cancer.

If you have dense breast tissue (either category 3 or 4), you should talk with your doctor about having follow up tests. Depending on your state, insurance may cover the cost of either an ultrasound or an MRI. Beginning 1/1/2018 in Illinois, insurance covered the cost of these follow up tests if a mammogram shows category 3 or 4. Did you note the discrepancy in dates there? Insurance had to cover the tests 1/1/2018 but the mammogram report did not have to report breast density until 1/1/2019. I have spent a lot of time researching breast density and breast cancer since my diagnosis. The website I recommend for a starting point is https://densebreast-info.org. They have a State Legislative Map page where you can see what laws about breast density are in effect in your state in the US.

There are differing opinions among experts on the need for follow up testing for women with dense breast tissue. Dense breast tissue is very common. Having dense breast tissue does not mean you will get breast cancer. That said, I am a woman who had annual mammograms faithfully beginning at age 40. My last mammogram in October 2018 was declared negative for signs of breast cancer, however my density was category 4 – extremely dense. When I felt a large lump in my right breast and had a mammogram 7/17/2019, the report said that a tumor was not visible – but since my doctor had felt the lump, there was cause for further testing. Think about that —— at the point where I had metastatic breast cancer, the regular mammogram still just showed a glob of white that could be dense breast tissue or could have been the large tumor. The ultrasound made the tentacled tumor easily discernible. even I knew what I was seeing on the screen.

If you have dense breast tissue, should you have follow up tests after your regular mammogram? That is up to you. These tests are costly and, depending on your insurance and where you live, they may be very expensive. That said, we know the end of my story. I have stage 4, terminal cancer. I cannot change that. I can, however, spread knowledge of breast density and insurance laws so that women know they have choices. Since I began posting on social media about breast density, several friends have told me they looked at their mammogram reports, learned they had dense breast tissue, and got follow up testing. At this point I can happily report that all of them came back free and clear of breast cancer. It is my hope that more women will learn to read their mammogram report and understand what it means. I cannot change my story, but I may be able to save someone else’s life.

7/10/2019. I had reached my WW weight loss goal and ran/walked 10K after work. I remember walking up our gravel lane and feeling on top of the world (along with sweaty and exhausted). I took a shower. And I felt a lump in my right breast. Once. Twice. How can that be there? I hadn’t noticed it before and it seemed huge. I had been getting annual mammograms since I turned 40 ( and I was now 17 days from my 50th birthday). They were all clean, even the once from October 2018.

7/13/2019 I saw my family practitioner about the lump and he ordered another mammo.

7/17/2019 Mammogram – suspicious.

7/24/2019 Biopsy and breast ultrasound. Even I could see the tentacled tumor during the ultrasound. I was relatively calm, figuring I had “breast cancer.” You know. the kind that people battle and win. Because I had been experiencing some abdominal discomfort that last couple nights, I also had an abdominal ultrasound because they suspected my gall bladder was acting up. My gall bladder was perfect. I did not have “breast cancer.” I had BREAST CANCER. Metastatic breast cancer. Stage 4 breast cancer. Terminal breast cancer. The tumor in my right breast had already metastasized to my bones (sternum and spine) and liver (innumerable tumors).

7/25/2019 CT scan shows the cancer has also reached my right adrenal gland, which has one huge tumor on it.

Late July and early August saw me meeting my oncologist, Dr. Folusa Ademuyiwa, at Barnes.Wash U. I had a bone scan, more CT scans and MRIs. I had a port installed. I learned I had HER2+ breast cancer. My first chemo treatment was Aug 6. The MRI showed there were actually 2 tumors in the right breast. My liver was covered with tumors, too many to count.There were 3 spots on my spine and then also on my sternum. There were 2 enhanced lymph nodes.

By my second chemo treatment in late August, the breast tumors could not be felt anymore. That was an amazing amount of progress in a short time.

October 2019 Scans show great progress. They confirmed that the breast tumors are gone. The liver tumors are shrinking. There is no new progression.

Feb 2020 Scans show everything looking better except adrenal gland tumor grew slightly. I had 5 radiation treatments on it and continued the chemo. Scan also shows potential problem in endometrium. Further tests suggest that is benign fibroids. Finally – SOMETHING in my body is benign.

July 2020 Scans still show lesions on my liver, but they are numerable now and many appear to be small and perhaps scar tissue. Adrenal tumor has not grown. All bone lesions in spine and sternum healing. Staying on Herceptin and Perjeta and Zometa.

November 2020 Scans continue to show my cancer is stable. My cancer will never go away and have now learned that “stable” is something they celebrate in oncology. Bone scan showed something interesting – healing tumors all over my spine and skull. The first bone scan happened the day before my first chemo treatment. My very aggressive cancer was spreading fast until the chemo hit it. No wonder I have so much back and neck pain – there are holes all over! But they are healing so no need to change treatment.

Thanksgiving 2020 I had a few days of feeling some vertigo. Didn’t think much of it until I passed out in the bathroom in the middle of the night. A trip to the local ER followed by a ride to Barnes Hospital resulted in learning that I have 3 or 4 brain tumors. I had gamma knife treatment on 3 of them, The radiologist and the neurologist couldn’t agree that the 4th lesion was a tumor or not. I didn’t want to radiate healthy brain tissue, so we let that spot go for now.

I will have my next round of scans in March 2021, including a brain MRI to see if there are any new tumors there. I am continuing on Herceptin, Perjeta every 3 weeks and Zometa every 3 months.

“This is never an easy thing to say.”

There are two parts to my life. One part happened before I heard that sentence. The second part started the moment I heard a physician’s assistant say those words; two entirely different lives. I’m not the same person. Metastatic breast cancer stole my identity. Most days I feel there is nothing left of the former me. Physically I went from a very healthy middle-aged woman who worked hard and completed a 5K to an overweight blob who struggles to maintain any physical activity and is in near-constant pain. Mentally I went from a confident problem-solver to someone who cannot stop thinking about cancer and death to the point of losing my focus on the present.

My way of fighting back is to tell my story – so that other women know how to advocate for their health and demand the right screening measures (more on that in an upcoming entry) – so that people can learn updates on my cancer battle without constantly asking my husband children – so that people learn about metastatic breast cancer (because I had never heard of it until I was diagnosed) – so that I can tell you that I am determined to keep living every day that I am alive and maybe you can get some inspiration from that when life is getting you down.