Today at a small group gathering at church, someone wiser than me likened parents dealing with adult children who do not get along to God dealing with all of us in the world who do not get along. How profound.

I have been very open that I have been in talk therapy for years, since before my diagnosis of incurable cancer. My therapist is as much a part of my medical team as the team of professionals who care for me at Barnes. I have survived trauma. Most of it I only discuss in therapy because telling my full story requires telling the stories of other people and I will not do that. In the weeks after learning I had stage four cancer, with an average survival of 2.5 years, it became crystal clear to me that I could decide with whom to spend my precious remaining time. That does not mean that I shun people. Just like my church friend said today, God loves us all and sometimes I just need to play nice. Instead, I feel less guilt in saying yes to some things and no to others.

I used to play the organ at churches of many denominations, but had a “niche” in a certain group that has some huge differences in beliefs than me. After being horrified twice when I had guests come with me and those guests were vilified during the service, I vowed to never do it again. Music is my connection to God and when I am playing, I need that connection to not be compromised by hate and hurt. I am sensitive to those who preach about healing without clarifying just what they think healing is. In a time after my diagnosis, when I was church shopping, I sat through a sermon where the speaker bragged about how many people he knew who had been healed by God because they believed and asked God to heal them. He even declared his wife’s infertility was cured by them praying. I sat in shock, looking around that sanctuary, wondering who else was sitting there with cancer or infertility and thinking they just didn’t believe enough or hadn’t asked God in the right way. Did this mean I was not worthy of healing? I have terminal cancer yet I am utterly certain that God loves me. I do not believe healing equals my cancer being cured. So many parts of my existence have been “healed” despite the relentlessness of metastatic breast cancer.

My faith makes my life profoundly better. Why do so many persist in wounding people in the name of religion? There is a song I love called, “Truth Be Told” by Matthew West. Part of the lyrics include:

“There’s a sign on the door, says, “come as you are,” but I doubt it, ’cause if we lived like that was true, every Sunday mornin’ pew would be crowded. But didn’t You say church should look more like hospital? A safe place for the sick, the sinner and the scarred, and the prodigals, like me.”

I am distressed by what is happening in our world. I hold on to hope by cultivating my little corner of the world. That often involves playing the piano or writing or baking. I am home alone nights because Dave works nights. I usually light candles. This week I decorated my year-round tree for Valentine’s Day. There is horrific injustice in our country, but I can add light to the corner of my dining room. I can send a card or two to people. I can bake some bread and cookies to share. I can send a meme to a friend. I can go outside in the dark with Madi and look at the moon and the stars. I can enjoy her sleeping at my feet under my desk.

Tomorrow I will send more emails to my elected officials. Tonight, I am going to marvel in the precious present.

Metavivor and Light Up MBC have switched sites for hosting its fundraising. My new personal page can be found here: 

https://secure.qgiv.com/event/lightupmbc/account/2221601

Dave and I left the farm at 10:00 this morning for my 2:00 appointment at Siteman Cancer Center in St Louis. Today was treatment #212. We are thankful the interstates are clear from the weekend’s winter storm.

The nurse who accessed my port and drew my labs has been a nurse at Barnes for 2 years but worked there the previous 8 years in food service as she earned her education. I so appreciate health care professionals who choose to work in oncology. It cannot be easy.

There are two days left of this month and one more medical appointment. I don’t have to return to St Louis until Feb 17 and I’m thankful for the reprieve. I have a temporary crown on my molar and digestive issues have been much lighter the last week. I also got to see all three of our adult children in the last week, which makes my heart happy. It’s still daylight and we are already on the way home. I expect to get home to Madi Moo around 8:00 pm. Two of our kids split dog-sitting duties today so I know she does not miss us at all. 

My January is full of medical appointments and I thrive on quiet days at home on the farm. I am also someone who loves her old school paper planner so I purposefully scheduled one No Plan Day each week this month. The first one was utterly amazing. The second one was yesterday and let’s say there were complications. It started well with a trip to town with Madi to run the car through the car wash because it was finally above freezing here. The sun was shining for a change. I spent time in my Llama Lounge (formerly my office when I was a working human). It used to be my mom’s hair salon so there are more windows than walls. I write, draw, practice calligraphy, check emails, work on my photo projects, and enjoy life there. I started proofing a batch of homemade cinnamon rolls.

I was enjoying a late lunch (which we call lupper in our family) when I heard a crack and felt INTENSE pain in a lower molar that I now know is Tooth 18. I cannot describe the intensity of the pain in words. Just picture me screaming. I have birthed 3 children sans epidural. I have stage 4 cancer. I had an emergency surgical procedure in a doctor’s office with only local shots because there was no time to rush me to the hospital due to the bleeding. I am well known for my pain tolerance. Heck, I had stage four cancer likely for many months and just dismissed the pain in my liver and bones. But this tooth pain was bad. I couldn’t sit still. I called my dental office and then called the on-call dentist’s cell phone as instructed per voicemail. Crickets. I was desperate.

Then I called the Calvary. I’ve known an endodontist in Champaign since kindergarten and he is married to one of my besties. Dave rushed me down to his office right as it closed at 5. Turns out I cracked that molar in half diagonally. Think of slicing a hunk off at a diagonal, clear to the bone, through the middle, exposing the nerve. It was a dangling flap of pain. Because I take a biophosphate for my bone mets, I cannot have tooth extractions. (Cancer – the gift that keeps on giving.) Since the simplest solution was off the table, I had an emergency root canal yesterday evening with his wife (my bestie) called in from home to assist. Dave sat in the corner of the room. It was like a fun evening out with friends except for the root canal part. Once I was finally numbed, I didn’t care about anything else. I left hours later with a lovely root canal, a temporary filling and a weird sorta half tooth in the back of my mouth that hopefully my dentist can crown. I left with an amazing heart of gratefulness for my amazing tribe. I still cannot imagine what I would have done without the Calvary last night.

If you are in my area and need an endodontist, I will tell you who to see. He is known as the best anyway, but happens to also be an amazing person.

I am mentally wiped out today and going to try for another No Plan Day. I did finish rolling out and baking those cinnamon rolls while I waited for a callback yesterday. I had to keep moving due to the pain. I may make some local deliveries today with Madi.

Just this week my therapist said we all need 3 friends in our lives we can count on for absolutely anything, can express absolutely anything to, and will just always be there. I have several but to Dave, MJ and KRP – I simply couldn’t do life without you.

Dave and I left the farm at 3:00 Tuesday in the midst of a digestive system revolt. It was a tough day. The brain MRI results were good, though. There are no new tumors and the faint trace of a new one that appeared in October has disappeared. So the daily chemo pills I take are definitely crossing the blood brain barrier and doing their job. As I puked on the side of I-70 on the way home I thought about how this is better than a new brain tumor. I go back to St Louis in 2 weeks for chemo 112. In March I will have my neck-down scans. For now, I enjoy the renewal of my license to live.

I have medical appointments on 15 of the 31 days in January. Some days have multiple appointments so that is 21 appointments total in those 15 days. It is exhausting but necessary. Three of those days require a trip to Barnes which is a 421-mile round trip. I am leaning hard on the piano and writing and art to keep some sense of perspective.

Tuesday I have a brain MRI and an appointment with my radiation oncologist. I am hoping my brain continues to be “unremarkable” which means the tumors we have been watching continue to be unchanged and that no new tumors or necrosis is there. I currently get a brain MRI every 3 months. For a few years I had them every 2 months since I seemed to be very good at growing brain tumors. (I’ve had 12 or 13 total. There is some confusion if the latest one was a new tumor or if it was new growth on an existing tumor.) The oral chemo pills I take cross the blood brain barrier and seem (we hope) to be working.

Chemo infusion 111 was much kinder to me than 110.

We celebrated National Labrador Retriever Day last week along with a Chicago Bears playoff victory.

The news is often too much for me to handle. I have learned to value my softness. I use it to maintain hope in this world full of hate and injustice.

Chemo 111 had a mid-afternoon start time today so we brought Madi along for the day. She absolutely loves being in a vehicle and behaves beautifully. While I had my labs and chemo, Dave and Madi hung out in Forrest Park near the hospital. St Louis was sunny and temperatures were in the mid-sixties.

The cash price of today’s trip is around $30,000 so that means I will have to pay my annual out-of-pocket maximum for this trip (which is, thankfully, less than $30,000). We are thankful for Dave’s employer-sponsored health insurance. I have cancer friends who have ACA plans and are facing devastating health insurance premiums this year. Please take some time to review your own insurance coverages. If you don’t understand the difference between a co-pay and a deductible, or have other questions, call your insurance company and have them explain it. You have to be able to advocate for yourself.

My digestive issues were really bad this past week but today has been okay. I did have a fall at home after Christmas but there were no significant injuries. The bruises are almost gone. This week I have physical therapy on my shoulder. Next Tuesday I go back to St Louis for a brain MRI and meet with my radiation oncologist for the results. She will tell me if I get to renew my “license to live” another three months.

I had a bad reaction to this treatment. It’s been challenging. Just when I started to recover I was hit by a bad head cold. I’ve mostly been in bed or on the couch. Nurse Madi has been on the job.

On my one partially okay day this week I made Christmas candy without my mom for the first time ever. I also baked six loaves of my favorite bread. Kneading is therapeutic.

I almost didn’t attend our monthly Cousin Breakfast, but talked myself into it at the last minute. I am so glad I did. Kelly, Suzi, Jill & Jaci – your love heals me.

Today is treatment #110 and my 7th Christmas in the chemo pod. Dave & I left the farm at 6 am. I saw my oncologist today, the amazing Dr. Bisi. They had issues with some pipes that closed some of the chemo pods in the Siteman Cancer Center. That would wreak havoc to the schedule any day, but especially so close to the holidays. Since we know our way around down here they switched me to the Cancer Care Clinic at the last minute and we are grateful. All the buildings here on the campus are connected with links and skywalks.

Last week was one year since my mom died. It was rough. This feels like the first Christmas without my mom since last December was a painful blur. Her memorial service was December 20 and I had chemo on December 23. Christmas was a blur.

I am reading a wonderful book, “All Creation Waits – The Advent Mystery of New Beginnings” by Gayle Boss. Each day tells the story of how a woodland creature prepares for winter. The drawn illustrations are gorgeous and each animal is introduced with a quote or a poetry voice. I find it comforting to see all that animals go through in their preparations for surviving winter. When I am struggling with the lack of daylight and impending cold, this book reminds me this is a normal process of life and it is necessary to adjust my routine accordingly. These are dark times for all God’s creatures, including me.

January has 3 trips down here – treatments 111 & 112 along with a brain MRI and visit with my radiation oncologist. Hopefully my “license to live” will be renewed once again.