Now that I am vaccinated I have started venturing out in the world a little. I went grocery shopping for the first time in over a year. I had my teeth cleaned. (My poor hygienist had to use a chisel and pick axe to get them clean!) I practiced the organ in an empty church. I met my childhood friends for dinner in our favorite restaurant, where we sat in a heated outdoor patio. I had not seen them since October. I even took my college-age son shopping for odds and ends. I hope I never take these things for granted again.

I followed a Twitter thread today that discussed anticipatory grief. It refers to a feeling of grief before an impending loss, but not necessarily death. One can experience anticipatory grief before a scheduled move or job change or major life event. The particular Twitter thread today discussed the anticipatory grief that people with metastatic breast cancer (MBC) experience.

I grieve the life I won’t experience.

My husband and I often talked about what we would do in retirement. We were high school sweethearts and have been together for 34 years. I always pictured us growing old together, enjoying life on the farm and traveling wherever our kids live for visits. I immensely enjoy watching my kids grow into adulthood. You work so hard to raise them so you can see the kind of people they are as adults – independent thinkers. You want to see them making choices that are solely theirs – that you put enough “good stuff” in them to sustain them through their life.

I grieve the life I had before cancer.

Sometimes it is hard for me to remember how I felt about things before cancer. What did I worry about? What kept me awake at night? My cancer was already at Stage 4 when I was diagnosed, so we don’t know exactly when it started. When I look at photos from several months before my diagnosis my mind starts to play a horrible game called, “Where was the cancer at this point? Was it already in my liver? When did it reach my bones? Was my adrenal gland already covered in a huge tumor?” I miss living a basically pain-free life now that I battle pain every single day. I don’t miss my hair but I sure do miss my eyelashes! (Those things come in very handy, beside looking nice coated in my favorite mascara.)

I work very hard to keep my focus on living rather than on dying. But that anticipatory grief creeps in when I least expect it. Listening to people talk about retirement plans or when they will retire will do it. Seeing parents talk about their kids getting married will do it. My solution at the moment to handle anticipatory grief is to face it head on. I certainly don’t want my friends and family to avoid discussing certain topics around me. That’s not living! So when I feel the sadness creep up, I throw it up to God silently while staying in the conversation or situation. I also try very hard to instantly think of things I can do, today, to make up for the thing I think I will miss. I am enjoying spending much more time with my family and friends. I am trying to put much more of me into life, versus sitting back and waiting for things to happen.

Someone today told me they think I have such a positive attitude and they cannot believe I laugh so much. My grandma said, “You can laugh or you can cry. Laughing is much more fun.” I try to follow her advice. When people ask, “How are you?” The first thing that usually pops up is, “I’m fine except for the terminal cancer.” There is a lot of truth to that.

I learned a lot of theology from Veggie Tales and this particular song has been on my mind today. Here in Illinois, it was a gorgeous, warm, sunny day. I spent most of the afternoon outside, working in the yard. Physically it was a great day, with fatigue being my only cancer side effect. Mentally, my spirits soared in the sunshine and fresh air. And yet… a check of my metastatic breast cancer social media groups this evening included several announcements of members who died and others entering hospice. And yet… the online newspaper I read is full of stories of poverty, crime, war and natural disasters. And yet… I learned that our friends lost their son in an accident yesterday.

Many people love to remind us that, “God has a plan.” When I hear that I think of a movie about Greek Mythology I watched as a teen where Zeus moved humans around on something that looked like chess board – changing their lives on a whim. I just cannot believe that the God I love is choosing who gets killed in an accident, who dies of cancer, who is born with a developmental disability, and so on. I believe that God is with us, helping us face our problems. God is bigger than the Boogie Man.

God did not give me cancer. God is not going to make this cancer disappear. But God has promised me eternal life, which gives me the courage to face stage four cancer. God is with me during treatments, procedures, and tests, calming my nerves and soothing my fears and helping me get through these things. God is bigger than all my problems.

Having metastatic breast cancer doesn’t make me constantly nice. I wish it did.

In the first few weeks after my diagnosis I was overwhelmed at the support I received from people – in real life and on social media. Despite all that kindness, there was a great deal of anger and jealousy inside me. I would see other moms at school events and feel so resentful that they were going to be around for years with their kids while I wasn’t. I would read social media posts where people complained about trivial issues and become irate. As I adjusted to my diagnosis and settled into the treatment plan, those emotions subsided enough for me to control them. I remind myself that I used to complain about things that don’t matter to me at all anymore. I remind myself that it isn’t another mom’s fault that she will be able to parent her kids for years when I won’t.

As more months passed I found myself resentful of anything non-essential that took up precious time. It made me impatient and unkind when people or circumstances wasted my time. Didn’t everyone understand that I need to make the most of each day? Around that time I read about a concept called the, “Ring Theory.” It was shared a lot on social media for a time. I discussed it with a social worker at my cancer center. It was developed by Susan Silk and Barry Goldman and you can research it to learn more. For me, it meant that I was in a circle by myself. Then I drew a larger ring around that and included my husband and children in it. The next ring included my mom. I kept drawing larger circles. The rings helped me prioritize people and my time. When talking to someone in a ring smaller than yours, the goal is to help. If you need to scream or cry or complain, do it to someone in a ring larger than yours. Visualizing that diagram helped me say “no” to things that involved people that were farther out. It helped me see that it was okay to stop people from giving unsolicited advice, because that is not helpful. I learned to avoid people who sucked energy from me. Prioritizing my immediate family does not always seem nice to other people, but it is the only way for me to navigate this disease and keep my sanity.

The fact that I still work full time means that I am not able to spend as much time as I would like with my husband, my three children, my mom, and my closest friends. My job as the controller of a small company means I am a one-person accounting, IT, and HR department. My position requires more than forty hours a week. My diagnosis has not changed that. By the time that I am done working for the day, I am usually too tired to do anything else except take a hot shower and settle on the couch or in bed. This makes me even more adamant about prioritizing my time. My goal is to always make time for my “inner circle.” Anything beyond that is optional. (I do know that working full time keeps my salary and health insurance, which also helps care for my inner circle.)

COVID-19 changed my personality. For starters, my oncologist put me on home isolation. She kept me informed of the latest scientific knowledge about the virus, which kept changing as more research was done. I was horrified at the amount of misinformation my social media friends were sharing about the virus. Then I was shocked when people who claimed they were praying for me and supporting me also vowed they would never wear a mask. Next came the social media friends who posted that only compromised people would be killed by the virus, as if I was a disposable part of society. I tried arguing, but eventually starting deleting people from my social media life. I wanted to scroll through social media to see photos of puppies and kittens, inappropriate humor, people bragging about their kids, great recipes, and anything that was encouraging and uplifting. I am a member of several FB groups for people with metastatic breast cancer and these people are my lifeline. I follow several religious organizations and devotions that are on social media. I did not want to scroll through so many things that caused me stress to find the things on social media that are helpful to me.

I firmly believe it is possible to be friends with someone in real life and not friends with them on social media. Maybe this comes from my age. I can remember life before the internet. The internet makes us brave in sharing opinions that we would not normally offer in person to people. The internet and the concept of “polite conversation” do not gel. Unfortunately when I started deleting people from my social media to help my mental and emotional well-being, it hurt people. While I regret that, I remind myself that I need to take care of myself so that I am strong enough to battle this cancer as long as I can.

The events of 2020 and 2021 have changed my personality. As I write this today, over half a million people in this county have perished from COVID-19. Racial injustice abounds. There was an attempted insurrection in January. White Christian nationalists make me hesitant to acclaim my Christianity without an asterisk. (No, really, I’m the kind that really believes we should love our neighbors and that God is not American.) Instead of scrolling on by when social media friends supported things I find appalling, I decided to delete them. I wish I was strong enough to keep scrolling by, to respectfully disagree. I used to be. But that is a quality terminal cancer has taken away. It is hard to explain. I guess I don’t have time to argue with anyone. The problem with this at the moment is that I do not have the chance to see people “in real life” due to the pandemic. So when I deleted people from my social media life, they also disappeared from my real life. I have been trying to make up for that via email and snail mail and good old-fashioned telephone conversations, but I realize I have lost some friends permanently. I’m sure that if I was able to be out and about and see people in person, I would be able to handle this in a kinder and more graceful manner. But I am stuck at home and am fighting anxiety and depression along with my cancer. There is only so much I can do right now.

So cancer did not make me a nice person. It did not make me blameless. Cancer has weakened me physically and emotionally. Pain and other symptoms make me irritable. Anxiety makes me irrational at times. Grief steals my focus and my ability to empathize. I am a work in progress so I pray I have more time to keep growing and learning. In this, I find commonalities with the pre-cancer me.

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.