Presto Chango

I am tired of having cancer. Tired of pain. Tired of fatigue. Tired of chronic digestive emergencies. Tired of feeling “less than.” Yesterday evening I attended my 35th high school reunion. I had a day of pain and digestive issues, but pulled myself together and cleaned up well. Only my best friend who sat next to me had any idea how bad I felt. That is the way I like it. I don’t want to be “the cancer patient in the room.”

Today there was no pulling myself together. I wore my pajamas all day. I moved very little and slept much of the day. I had a short pity party when Dave was home and a really long one after he left for work this evening. This pretty much sums up my life with MBC. Some days I can focus on living and other days I am just tired of feeling sick every single day of my life. Some days I can pretend and other days I am a sobbing mess for Dave to pull out of the depths.

Today I am not dealing with it well. Maybe tomorrow…

I was reading Lamentations in The Message. I find help there on the dark days. My prayers are angry tonight. “What the fuck, God? “ I believe God understands. I feel held. I wait for tomorrow to see what it will bring. I count the hours until Dave is home from work. I trust that the worst is never the worst.

I meant what I said.

In my last post I said that I am going to look for shared commonalities and focus on them. I meant it.

That post happened to drop the same day as a controversial SCOTUS decision. It wasn’t planned. I have strong feelings on the decision. You might, too. I’m saddened at the posts I have seen asking people to unfriend them if they have different opinions. I’m saddened because I was that person in the past.

1 Corinthians 13: 1-7 (The Message) says:

13 If I speak with human eloquence and angelic ecstasy but don’t love, I’m nothing but the creaking of a rusty gate.

If I speak God’s Word with power, revealing all his mysteries and making everything plain as day, and if I have faith that says to a mountain, “Jump,” and it jumps, but I don’t love, I’m nothing.

3-7 If I give everything I own to the poor and even go to the stake to be burned as a martyr, but I don’t love, I’ve gotten nowhere. So, no matter what I say, what I believe, and what I do, I’m bankrupt without love.

Love never gives up.
Love cares more for others than for self.
Love doesn’t want what it doesn’t have.
Love doesn’t strut,
Doesn’t have a swelled head,
Doesn’t force itself on others,
Isn’t always “me first,”
Doesn’t fly off the handle,
Doesn’t keep score of the sins of others,
Doesn’t revel when others grovel,
Takes pleasure in the flowering of truth,
Puts up with anything,
Trusts God always,
Always looks for the best,
Never looks back,
But keeps going to the end.

If you could somehow know that you would be diagnosed with a terminal disease this year, what things would you want to do? Are there relationships you would try to repair? Are there people you would be sure to spend more time with? Are there things you would want to accomplish? Go do these things.

Work in Process

I will be trying to be a better person for all my earthly life. No matter how hard I try, I have not been able to be like the people I admire so much. These are the people who truly understand that the greatest commandment is to love one another. These are the people who can regulate their emotions and express their opinions in thoughtful ways.

Outdoor fun during the Pandemic

The pandemic was hard on all of us. I don’t think any particular group had it worse than others and I don’t believe any of us made it through unharmed or unchanged. As a cancer patient, I was forced to isolate at home until the vaccine was developed. My introverted self loves being home and I live on a farm so my home includes several acres to roam. It could have been much worse. Yet I still look back and see how I became so dependent on interacting with humans online that I started seeing people’s social media selves as their entire selves. I was scared and angry at what was happening in the world and decided to cut ties with people on social media to lower my anxiety level, since I had lost my ability to “just keep on scrolling.”

It is so easy to lump people into “us” and “them” categories. Too easy. We start avoiding people rather than working to interact with people who are different than us. The last few weeks have shown me that I need to work harder than ever at “loving one another” and to focus on fixing me instead of fixing the generic “others.” Nadia Bolz-Weber published an essay about this 6/19/22 and the link is here if you care to read it:

https://thecorners.substack.com/p/thats-our-word-to-make-fun-of-you

Us vs. Them

I was very upset over a book discussion at my church. My therapist pointed out that it was a very poor decision to join a discussion about dying of cancer with a group of people who are not dying of cancer (as a whole). That seems so obvious in hindsight. I need to save those discussions for my MBC groups. My church and my church family are a lifeline for me and I am thankful to be part of that mission.

My Church

Us vs. Them

My pledge class at my sorority had a reunion last weekend. We took turns sharing what we’ve been doing since 1991. That room was filled with women who are leading diverse lives but one shared commonality. There was no division or animosity despite a room of people with diverse opinions on politics, religion, and other social issues. We had moms of kids who are not heterosexual and moms whose kids work with anti-homosexual organizations. We had moms who focused on careers and moms who stayed home and moms who did something in between and women who chose not to be moms. We had women who are staunch Republicans and women who are staunch Democrats and women somewhere in the middle. We had women living on farms, rural areas, and large metropolitan areas. What we had was a room full of women who loved each other and listened to each other and rejoiced with our joys and cried with our concerns. We did not focus on our differences. And that is how I wish to live.

My WHY

7/27/2006

These three kids are not so little anymore. They are my reason for everything. I want to be a better person for them. I want to make the world better for them. I want to put so much of ME in THEM so that they feel me with them even when I’m gone.

Your WHY

What’s your why? Can we help each other unite in our shared commonalities? After all, we are all Children of God.

(Kris, Ed, PD, Barb, Susan – you are all who I strive to be.)

Refuge for the Weary

After my cancer diagnosis almost 3 years ago, I transformed at unused porch into my Oasis. The door faces the county road on which we live so I suppose you could call it our front door, however no one can see the door because of all the trees. There is no sidewalk to this side of the house so most people wouldn’t know it is here. Through the growing season it is hidden by trees and bushes such that you cannot see anyone sitting here as you drive up the lane. I painted the floor and added furniture, plants and solar lights to turn this into a place where I can always find solace. It is shaded so it is almost bearable even on the hottest days.

Heidi’s Oasis in Elliott

I’ve had other oases in my life.

Pipe Organ at Immanuel Lutheran Church (Flatville)

I began playing the organ at my church when I was 12. I played a whole service by myself when I was 13. I retired from that this year, after 39 years of playing. I don’t miss playing for worship at all. I do, however, miss practicing in darkened, empty sanctuaries. That was always an oasis for me. God and I have a direct line of communication in them as I play.

4-H House Cooperative Sorority at University of Illinois

In the fall of 1987 I enrolled in the University of Illinois. I was ill prepared for college socially and emotionally. I lived in a dorm with 2 roommates; one from Chicago (the actual city) and the other from a suburb of St Louis. These were big town girls. I was from a farm near a village of 350 people. Their high school graduating classes had more people in them than my hometown. I was naive. They took advantage of me and made me the butt of their jokes. It was very unpleasant. As a first-generation college student, I had to figure everything out on my own. Daily life was a struggle. Cell phones didn’t exist so I walked around campus with a fold up map a long time. Depression and anxiety set in and life was unbearable.

Toward the end of the first semester I happened upon an article about 4-H House and called the phone number. Soon I was meeting with a wonderful girl named Darcie who gave me a tour of the house and explained everything to me. I moved there at the start of my second semester and knew instantly that this was my oasis.

At 4-H House there was a big board with our names on tags. We flipped them as we left and back again when we returned home. Not only did my roommates care about me, the entire house of 55 girls cared. I had people to walk with to class. I had people to go with me to the bookstore. We sang, we cooked, we cleaned, we laughed, we cried, we loved together as a group and it had a huge impact on my life and still does to this day. I made life-long friends there. I learned more about life there than any other place.

Indie and I enjoying winter

I try to enjoy time on my Oasis most days. I can tell when I haven’t spent much time there, as my anxiety sky rockets.

Madi FINALLY asleep

Even my new lab puppy, Madi, is affected by my Oasis. It is a place I can sit with her and she can freely explore and play without being told, “No!,” constantly. She wears herself out and then she and I can both enjoy the peace.

I hope you can find your own oasis in the midst of your life.

Daily Bread

My love of baking yeast breads began in 4-H. I still have my 40-year-old project book that explains the important role that each ingredient plays in the finished product. I always loved the science of yeast breads and the need to be patient in each step. Standing in front of the kitchen window kneading the dough gives me time to think and pause in an otherwise busy day. To me it feels like a living being of sort as it responds to the kneading and eventually becomes the right consistency.

I still use my 4-H project book.

I’ve been remembering how my dad and I would say the Lord’s Prayer at the end of each visit to the nursing home. It began when I taught a Sunday School class about the Lord’s Prayer and then discussed it with Dad that afternoon. Bread is a symbol for everything we need for preservation of life. When we ask for our “daily bread” we are asking for a very large, encompassing gift – that we get the job we interviewed for, that we get rain for the crops, that we have shelter from the storm. We tend to forget that we are asking for the necessities, not the luxuries. I would hold Dad’s hands and we would pray and then I would say, “Daily bread, Dad. We have everything we need.” I thought I was helping him to see we all had enough; that he didn’t have to be anxious and afraid.

Now I see that I never really understood that concept myself. All those times I reassured him we had all we needed, I was worried about my career, financial issues, my kids, my marriage, and about feeling like I had no control over my own life.

Here I sit with Stage IV cancer and I finally see that I have absolutely no control over my life and never have and am not supposed to. My career issues are meaningless now. My financial issues are not gone but certainly don’t keep me awake at night. The problems my kids have faced in the years since my dad died have been a thousand times worse than the problems they had when I was reassuring Dad we had all we needed. But I have learned they need to face their own problems so they can live independent of me – not without me, necessarily, but rather they need to be able to function as adults. (And they are all doing that as they navigate college and early adult life.) My marriage is the best thing going for me in life and I have the best helpmate and partner in life. I couldn’t get through this cancer journey without his unwavering support. I am blessed with an abundance of Daily Bread.

Are you up there smiling at me, Dad? I finally learned what I was trying to teach you.

My dad playing Bingo while my mom’s dog, Ginger, naps on the table

Huh?

The cancer continues to be controlled in my body. There is nothing new and nothing that has grown. The tumor on my adrenal gland has shrunk significantly. I am staying on the same course of treatment (and had that today). Today is a good day.

The bone scan shows that I have broken 4 ribs since my last scan (in February) and they are healing nicely. Since I did not have a memorable accident, this is probably due to cancer weakening my bones —- sadly not uncommon for patients with bone metastasis but my first experience. It also explains a lot of my pain and discomfort – and why it has been a bit hard to breathe when I walk. The Nurse Practitioner messaged me as we drove home to say they will X-ray it in three weeks when I have my next treatment to follow up. She added that it is good I have a high threshold for pain. I agree.

This is the day the Lord has made. Choose to live in it.

Picture Day

It may seem hard to believe, but I love the days I am at Siteman Cancer Center. It means we are actively treating instead of waiting and wondering if it is working. I will have lots of scans today; so, so many pictures of my beleaguered body!

First, I report to Nuclear Medicine where my port will be accessed and I will receive the injection for my bone density scan. I am amused that the technician wears lead gloves and removes the syringe from a lead case – then injects it into me. 😂 That starts the clock on a 90 minutes wait before they can begin the scan.

Second, while that clock ticks, I will report to Radiology to get my CT scan which also includes another dye injected in my port.

Third, I go to Cardiology to get an echocardiogram with another injectable contrast dye in my port. They monitor my heart carefully because the drugs that are keeping my cancer controlled are known to damage the heart.

Fourth, I will return to Nuclear medicine for my bone scan. They will leave my port accessed but covered securely to prevent infection.

Dave and I are spending the night in St. Louis tonight because I will get my scan results tomorrow from my oncologist and then get treatment. He will drive home and then go to work in this heat all night long. He is the real hero in this battle.Since my brain MRI was clear last month, I would sure like the same news for my neck down. Whatever the results, we will keep on going. I am receiving the best care at Barnes/Wash U.

Since I’ve been so down lately, it’s time to shake it up and share with you what I will be wearing all day today. Laughing is a lot more fun than crying.

Outside Looking In

I’ve spent most of my life on the outside looking in. To be honest, I like it out here most of the time; however, it also causes periodic times of profound loneliness. Metastatic breast cancer adds less time between the bouts of loneliness.

I was an awkward child who spent her time with animals on the farm rather than play dates. Preschool didn’t exist “back in the day.” Attending Sunday School every week was my social outing with peers. My only sibling is eight years older, so we loved each other but certainly didn’t spend time together.

My best friends were my cousins and I was most certainly blessed in that area. I have 21 cousins, most of whom lived within 20 miles of my childhood home. I am the youngest in both sides so everyone took care of me. Until junior high I spent the majority of my time with my cousins, especially with the 3 girls just older than me. There are so many photos of the four of us girls piled up together! We always spent Sunday afternoons at my maternal grandmother’s house and it was the highlight of my week. But there was heartache every Sunday evening when the moms said it was time to go and that meant the other three would see each other at school the next day and I wouldn’t see them until next week (I lived in a different school district). I can still feel that physical heart ache as I write this.

In junior high my grandmother died and there were fractures in the adult relationships. Gatherings stopped. My three amigos still got to spend their time together at school. I became the outsider. (To be fair, I probably belonged there. Your cousins accept your awkwardness and quirks; your peers not so much. ) Losing the closeness of that group is a hurt still felt today.

I have a profound friendship with Dave and have always been most comfortable around him. My cancer diagnosis brought us even closer together. He was with me when I received the diagnosis and has been with me for every single oncology appointment and chemo treatment. However, cancer also causes us to spend less and less time together. He changed jobs so that he works nights. This means he can go to medical appointments with me without taking a vacation day. There aren’t enough vacation days in the world for MBC! I was the main breadwinner and now I’m disabled so he works long hours to keep the family afloat. I visit with him briefly each morning when he gets home from work, and try to be here to visit with him an hour or two before he returns to work that night. The rest of my day is usually spent with my dog, Indie. (I’ve grown insanely close to my dog because she is my only companion most days. ) If I go somewhere for fun, I go alone. I come home at night to Indie and no one else. Our sleep schedules are not in sync so even on his days off, we don’t have much awake time together.

I feel alone now because no one else understands how I feel inside. I have scans again tomorrow. There is nothing I can do today that will change the results so logic tells me there is no point in feeling anxious. My brain is not interested in logic so my anxiety is over the roof. It is all I can think about right now. But I cannot share that with anyone because they will tell me to “think positive” or tell me not to worry. And that will just make me scream inside.

I had a deep sense of loneliness in a church group this week as we discussed a book authored by a woman dying of cancer. There were so many things being said in discussion that were so wrong. Just wrong. There were so many things I needed to say. Things I was screaming inside myself but I couldn’t share with the group. I quit the group and couldn’t bring myself to go back to church today. Which is why I’m sitting here alone on a Sunday morning, when I’m usually happily immersed in conversation and worship with my church friends.

I look at life so differently than most. My faith keeps me going and I mainly practice that within my music. That also includes reading lyrics as poetry. Joni Mitchell is a profound lyricist. She explains how I feel best in this:

Sometimes it is okay to give in

Many people use the imagery of fighting with cancer. Keep fighting. Fight like a girl. You are such a fighter. I’m generally okay with that imagery although I’ve learned that good fighters also know to choose their battles. Some battles are worth the fight while others are worth giving up. I find myself in a time of giving up a lot. Im struggling with it, even though my head tells me it is alright.

An alternate title for this blog could be “the old gray mare ain’t what she used to be.” July 24 will be my three year cancerversary. I had a 25 percent chance of making it that long. Here I am. But I am not anything like the person I was before that awful day in the doctor’s office. I miss her.

The old me was walking and jogging five days a week. She could work long hours. She could paint her deck and clean her house. She could pick up a laundry basket without a thought. She could go upstairs in her house without stopping to rest. She loved to ride on the back of a motorcycle with her husband and they spent a lot of beautiful evenings riding the county roads in our area. She could help her elderly mother around the house and run errands for her. She didn’t think about her death many times a day. She didn’t have hundreds of medical appointments each year. She had long, thick, fine hair and loved putting it up in a ponytail after work. She had thick eyebrows and long eye lashes that didn’t need mascara. She wasn’t in menopause (that came the moment of my first chemo treatment). She didn’t need a nap to get through the day. She loved to walk and would go on hikes with her kids. She wasn’t in pain all the time and certainly never needed opioids just to simply make it through a day. She had long range goals and pictured herself at events with her adult children. She didn’t have neuropathy from chemo so she could feel her fingertips and play the piano at the top of her game. She hadn’t experienced 2 years of constant steroid prescriptions that caused a huge weight gain and puffy cancer-like face. She didn’t know what it felt like to have a port installed as a permanent fixture to make it easier to get medicines. Her fingernails and toenails weren’t crumbly like chalk from chemo. She didn’t have thousands of medical expenses to pay every damn year. She wasn’t disabled and was prepared to fight any battle. She just assumed she would grow old with her husband.

I am disabled from cancer and it is time to stop fighting that fact and accept it. I overdo on good days and then it takes many more days to finally feel rested again. I’m suddenly living in a body that feels 30 years older than it is. I am giving up and trying hard to accept the new me even though I hate her.