I’m getting a cervical spine MRI today to determine the cause of my pain. I usually get scanxiety, but today I’m only looking forward to a step toward better pain relief. Four hours in the clanging tube today will test my meditation skills, but I’ve been practicing. I begin my tests by praying. My prayer list grows longer as I meet new friends in the MBC community.

My first instinct upon seeing the sunrise is to sing, “Oh What a Beautiful Morning.” It was especially pretty as I looked northeast beyond the pasture today. This is the day the Lord has made; let us rejoice and be glad in it!

Treatment 32 today. They wanted to do a cervical spine MRI to see why I’m in so much pain. They could not do it today because my health insurance company wouldn’t approve it today. They said it requires a 2 day review. So I will make the 3.5 hour drive back down here next Tuesday.

There surely is a special place in hell for health insurance decision makers.

Terms associated with war are often associated with cancer. Many cancer patients despise them because dying of cancer does not mean you did not fight hard enough to beat cancer. No matter how hard I try, I will die from metastatic breast cancer. (I’m generally okay with the terms – so please don’t think that is the focus of this post. ) I’m experiencing a lot more pain the last few days and it makes me wonder about the difference between accepting and fighting.

I have a great medical team working to help me live a great life with my family. My therapeutic massages relieve my pain – I only wish I could afford them more often. Staying active hurts but also helps me in the long run.

The day I found the lump in my breast is the same day I ran 10k for the first time. I discovered cancer when I was in the best physical shape I had been in for decades. Twenty-two months later I am in the worst physical shape ever. And I know it will only get worse – not because I am lazy or not “fighting.” My Fitbit is now set to a pathetic daily step goal of 5000. Most days I make it, but not all. There are so many things I cannot physically tolerate anymore. And I hate it. And I fight it, mentally and physically. And I am tired of fighting it.

I am trying to shift my thoughts to accepting the realities of stage 4 cancer and resilience. I am trying to be resilient instead of warring. There is a thin line between accepting and fighting; I’m trying to find that line and keep my balance on it.

I have a new personal trainer who is relentless. She makes me keep walking when I’m tired. My view the entire time we are walking is her butt in front of me, relentlessly moving forward. She wants to walk no matter the time or day, the weather, or how I feel.

Our walks in the tiny town I live near take us by the Elliott Veterans Memorial. Yesterday I was in so much pain that I wondered if I would have to call someone to pick us up. I stopped at the memorial to reflect on Memorial Day.

I am proud that we have this memorial in a town of 300. I am especially proud of this bench in memory of my dad, an Air Force Veteran.

I sat on the bench and Indie immediately put her chin on my legs. You see, my personal trainer also knows when I need a moment. It was that moment that I became determined to shift my focus from fighting reality to accepting it, while working to make the most of this life with stage 4 cancer. I refuse to see 5000 steps as a defeat. I also refuse to look at the days I cannot muster that many as a bad day. So I will continue to work hard for the best life I can have with Dave, Ross, Darrin and Haley. And I will accept that those days will not be like they were 2 years ago. Despite my physical limitations, I intend to make every day one filled with joy.

May is Mental Health Month. I am a member of NAMI, National Alliance on Mental Illness. A benefit of the pandemic is that meetings and classes are offered online which make it easier to participate. I’ve been a NAMI member for several years. The stigma of mental illness stings, whether it is you or a loved one. I have been on both sides of that coin.

Although I did not realize it until I was a young adult, I now realize I have battled anxiety my entire life. I’ve also beat myself up over my anxiety my whole life. I’m the closet cryer; the one who slips off to her car in the parking lot at work to have a meltdown; the one who locks herself in the bathroom with the water running to cry so her family doesn’t hear; the one with chronic insomnia because I keep replaying events in my head to berate myself over how I SHOULD have handled things. Let me tell you —- being diagnosed with terminal cancer exacerbated my anxiety! I was seeing a therapist when I was diagnosed. I had to cancel appointments because I was so busy taking care of my physical health. Then my therapist left the practice. Then came the pandemic and I didn’t want to find a new therapist via Zoom. This spring I found a new therapist and see her weekly. I look forward to our visits and am learning to put her suggestions to use in my daily living. I also take some medicine to help me.

My first time seeing a therapist was in my twenties when i first started noticing that other people seemed happier with themselves than I thought was possible. She helped me understand how certain parts of my life and events from the past affected me. Our conversations helped me “own” my anxiety.

I have loved several people who had periods of mental illness. It began as a small girl as I watched my dad get ready in the morning. He had the cup and brush to apply soap before shaving. I would stand by him and watch, just to be near my daddy. I remember him reaching for a little bottle of pills. I asked him what that was for and he told me it helped him on days when he had a lot of nerves. I accepted that and never asked more. Mind you, I couldn’t have been more than 5. As a child I understood what so many adults fail to grasp today: If you have diabetes you need insulin. If you have anxiety or depression you need medicine.

I have so many stories of loved ones and mental illness. They are excruciatingly personal and so they are their stories to share; not mine. Sometime I will blog about my lifetime of loving my dad while he had mental illness. You see, that stigma is powerful and that story has chapters that will never be suitable for sharing on a blog.

Let’s take a stand to talk about our own experiences with mental illness, the medications we need, and how wonderful talk therapy can be to sort through all that is running through our thoughts.

It was so so hard to get out of bed today. I felt like I could have slept another 8 hours at least. I told my husband, “I just don’t know what’s wrong with me. I just keep wanting to sleep.”

He reminded me, very kindly, that I just had treatment on Wednesday, that my cells are reacting to that and trying to fight off cancer.

Accepting less from myself is probably one of the hardest cancer challenges for me. I’ve been a caregiver my whole life. Continuing to work is the best way to financially care for my family. So excuse me now, but I have a zoom meeting on payroll soon and need to prepare my notes.

My treatment day began with labs. I have a port so they access my port to draw blood and leave the needle in place for treatment. Seven different tests are run on my blood and the results come back within 15-30 min, while I am seeing my oncologist.

Today I saw my Nurse Practitioner first and then my oncologist came in, too. It was good to talk with Dr. Bisi. She never rushes and always makes me feel like I am a priority in her day.

Next I go to the chemo waiting area until they have a chair open for me in the chemo pod. Today a woman in her sixties came out and the whole nursing staff gathered around to celebrate her ringing the bell signifying she is done with chemo. She and her husband had matching tshirts for the occasion and I cheered with everyone else. Inside, however, I was devastated at another reminder that I will never be done with treatment until I’m not alive. I am good with people celebrating. It’s just another reminder that we don’t know what people around us are managing “under the surface” so we should remember to be kind.

I’m in pod 5 today.

The oncology nurses start me on a fluid flush through my port. Pharmacy was really behind today so I was on fluids for over an hour before my 2 medicines were delivered to the pod. I visited with the nurses. We get to know each other here and I think oncology nurses are special people to remember us and the things we talk about. One of my favorites is in my pod today. Skip is retired from the military and now works as an oncology nurse. Talk about a life dedicated to service!

The chemo pods have tons of windows and I’m enjoying the sunshine today. I forgot my headphones so I’m listening to an elderly chemo neighbor who has not stopped talking since she sat down. Once my second bag has infused they will flush me again with fluids and then remove the needle from my port.

After this I will head downtown to a research building for a heart MRI as part of one of the clinical trials I am in. An hour in a loud tube and then we are heading home.

My middle is wrapping up his second year of college this week while my youngest is ready for high school graduation. Work is busy, as usual. I am playing for church next Sunday, too. Thank you for your continued prayers. I would appreciate some prayers to help guide me through some decision making.

I wouldn’t trade my life for anyone else’s.

Really.

My gran said that if you throw your problems in a ring with a bunch of other people, you would choose your problems back rather than picking up new ones. I never truly understood that until this morning. As I sit here with stage 4 cancer and having to work full time to keep insurance and financial stability, I am overwhelmed by all the blessings in my life. So many blessings that I could not list them all. But here are a few.

I have the most incredible spouse who shows me his commitment to our wedding vows every day. Through sickness and health. For rich or for poor. He tells me often he wishes he could be the one with cancer so I could be the one to get all the rest of the years with our kids. That is love.

I have three amazing, unique, interesting, determined kids. They like to think they have nothing in common but I see the same independent streak in each of them that assures me they will be just fine. They are the center of my universe and I love sitting back and watching them tackle life. My fierce love for them keeps me going on the worst days.

My mom is a tiny octogenarian who is mighty in her ability to love me and take care of me. She listens to me vent and celebrates the good days with me. She is a woman of valor and I hope to make her proud always.

I have a job that is well suited for working from home and I work for a company that is sticking with my and supporting me. I’m sure my boss and the board of directors did not imagine me shifting to working from home when I was hired 4 years ago. Nothing like that happens “in these parts.” My boss knows how much the coop means to me since it was my dad’s. He knows I give my all and he trusts that I will provide the financial directions they need, even if it is not from the office at the elevator.

I have a lot of wonderful friends. Three of them are key to my life. Malinda, Kathy, and Sara have known me for decades and love me, warts and all. They hear all my good days and bad days. They know the fear and hurts that I discuss with no one else. I know I can just let it all out with them. They seem to know when I need a good laugh and when I need a good hug (even if it is a long distance one).

I have my music as a way to keep me sane and communicate with God. Sitting at the piano is my favorite spot. Rattling the walls of a church with the pipe organ comes a close second.

I live on a farm where I can have space and peace and quiet. I can sit on my porch and listen to the birds and figure out life.

I have a dog who is my nurse and best buddy. She is there at 2 am when I’m scared of dying. She worships me and loves me unconditionally.

I could go on, and sometime I WILL continue this post. But for now, I am going to enjoy this feeling of blessedness and be thankful for my life. How could I ask for any more than what I already have?

Today has been a very physically painful and mentally frustrating day so I came to the garden to have a conversation with my Savior.

I was only going to play for a bit.

That was over three hours ago

I started playing the organ when I was twelve. I’ve spent a lot of hours practicing in dark, empty churches. When I was young the creaks and groans of these buildings scared me so my dad would come along and sleep in a pew while I practiced. A few decades later I have come to love the solitude of an empty church.

God and I had a lot of things to discuss today. Cancer is hard. Parenting teens is hard. Parenting teens when you have cancer is daunting. We want our kids to learn from us to spare them from making mistakes we have made ourselves. We want them to trust us and take our advice. When they don’t and seem determined to make mistakes, it is time for me to go to the garden and be reminded that I am not in control. Cancer is not going to allow me time to sit back and watch all this “learning by experience” turn out okay in the end.

God is with me. Always. God is with my kids. Always. I rest in the peace of handing them over to God’s care and I trust that He will see them through all their days. I want so badly to be with them for more of their days.

The sure sign of a difficult day is that I am wide awake in the middle of the night. It was a long work day that included an evening trip to the office. Any day spent mostly sitting leaves me in a great deal of pain. My job is probably typical with several really great people but a few that try to make everyone around them as miserable as they are.

Learning More About MBC

I listened to a brief webinar about MBC while I worked. I prefer to know more about my enemy, but this is the first one I’ve attended since discovering brain mets. Did you know that in a 1 cubic cm tumor there are about 1,000,000,000 cancer cells? That’s one billion! I was diagnosed de novo (stage 4 from the start) with a large spider-like tumor in My breast and innumerable tumors on my liver and a large tumor on my adrenal gland and many bone tumors. Imagine how many billion cancer cells were floating around my body. Yikes.

This webinar discussed several exciting treatments for my type of breast cancer, HER2+. But then the presenter mentioned the blood brain barrier. The human body is amazing and the blood brain barrier is an invisible divider between the brain and rest of the body. This barrier serves to protect the brain from disease and toxins. That is a good thing. This also means that most drugs do not cross the blood brain barrier. That is a bad thing for cancer patients. The same drugs that are controlling my cancer so well below the neck are doing nothing to my brain. HER2+ spreads to the brain 50 percent of the time. Very little progress has been made in the last 20 years in treating HER2+ that has spread to the brain. Lucky me. There are a couple trials out there that are promising and gamma knife has been successful for me.

This evening I participated in Zoom MBC Grief support group. I am so grateful for the MBC advocates out there working to organize these groups. Because I still work full time, it is difficult for me to find the time I need for these groups, but I try to fit them in a couple times a month. The mere act of conversing with other women with MBC helps me not feel so alone in this journey. I have a supportive inner circle, but these women truly know how I feel. The topic was regrets. It was a great discussion, but also stirred up some feelings that aren’t settling down to allow me to sleep.

Regret

Two years ago today I set a personal record at the Illinois 5K. This photo perfectly captured my emotions at the finish line. Joy! I had no idea that I had cancer growing inside me at that moment. Because I didn’t know that dense breast tissue requires more than a mammogram to find cancer, because the radiologist wasn’t required to tell me that, because I was told my previous mammogram showed no cancer, I could feel complete and utter joy. I won’t ever feel that sense of joy again on earth.

Tell my Story

I cannot go back and change what had happened but I can tell my story and urge women to know their breast density. If you are category 3 or 4, demand a follow up ultrasound or MRI. If you don’t know your density, look up your last mammogram report. If it doesn’t tell you, call and make them tell you your density category. Then, if you are category 3 or 4, make an appointment today with your primary care provider to discuss the next steps. I cannot change my story, but I can change yours.

I stood outside tonight on the farm and noticed a gorgeous full moon. I thought of all the women from my webinars who were under this same moon. I thought of the people I love being under the same moon as me. I sang to the moon:

I see the moon and the moon sees me. The moon sees somebody I want to see. God bless the moon and God bless me. God bless the somebody I want to see.

I really think that the Lord above created you for me to love and picked you out from all the rest to be the somebody I love best.

When I get to heaven and you’re not there, I’ll write your name on the golden chair. I’ll write it big so the angels can see, just how much you mean to me.

I’m at Siteman South County receiving treatment #30. Time flies when you’re killing cancer.

The Tin Man

I’m still pretty tired from my gamma knife procedure last Thursday and get a little dizzy occasionally. Monday I had another fall at home. This time I was in my carpeted bedroom, which helped. What didn’t help was my right hip landing on top of a large plastic dog toy shaped like a bolt. It made a very large, interestingly-shaped bruise and scratch with a variety of colors. I’m still pretty sore but getting better everyday. One of the side effects of my targeted therapy is what I call the “tin man” effect. I often feel like the tin man from the Wizard of Oz, before he was oiled by Dorothy. When the Tin Man becomes dizzy and starts to teeter, she tends to topple to the ground!

Learning to Love

Sunday I played the pipe organ for two church services. It was so therapeutic to get back to that right after the gamma knife. The sermon text was from 1 John 3:1. “What marvelous love the Father has extended to us! Just look at it—we’re called children of God! That’s who we really are. But that’s also why the world doesn’t recognize us or take us seriously, because it has no idea who he is or what he’s up to.” Pr Lehman reminded me that we need to love more and love without all the conditions. I love my 3 kids infinitely more than anything else. It is hard for me to think of God loving me like that – but God does.

My maternal grandmother (Gran) was my greatest example of that kind of love. She loved you no matter what. She paid no attention to how someone looked or acted. I never once heard her say negative things about anyone and she always came to the defense of others. There was a time in my life when I thought she was not strong. I thought she allowed people to treat her like a door mat. I have learned that she was actually a pillar of strength. She was secure enough in her faith to see all others as fellow children of God. I am trying to learn to love like that – without conditions. I have a long, long way to go.

This weird thing I do with my brain

I’ve had a few days to adjust to the news that I had 5 new brain tumors last week instead of 1. When I receive not-so-good cancer news I have learned to give myself about a week to compartmentalize that news into part of my brain. I cannot forget about it, but I can place it in a specific part of my brain that I try to only access at certain times. Usually that is late at night when Dave is at work and I’m hanging out with Indie. Sometimes that is when I’m taking a walk outside with Indie. Often this is when I’m playing the piano, a time when I feel closest to God. I’m not happy that there were 5 new brain tumors, but I am confident the gamma knife took care of them. I intend to only die ONE day, which means I need to focus on LIVING the other days. I am blessed with a support team to help me do this. My husband, my 3 kids, and my mom take good care of me. I have 3 close friends who check in on me almost daily. This is the day the Lord has made. Let us rejoice and be glad in it.