A friend asked me today how I was feeling. I paused and then broke out in laughter. I wouldn’t know how I’m feeling because there has been no time to focus on me or my feelings or my emotional state. The last few days have been a whirlwind of caring for my mom and figuring out how to move forward with some help for her. I’ve mentioned that I’m not good at asking for help. My life has been out of balance in the giving and receiving of help. I’ve been a caregiver most of my life. Thank goodness for my friends who have stepped up with food and messages of encouragement and a ramp for a handicapped dog (yep – my life is insane). Thank goodness for my daughter who spent time with her Gran so I could rest and also watched a couple Hallmark movies with me last night so we could laugh. Thank goodness for my sons who show up when I need them and give the very best hugs in the world. Thank goodness for Dave who, like always, manages everything at home when I need to spend time caregiving away from home. Thank goodness for my two dogs who welcome me like the prodigal son when I am able to come home for a time.

Just because life events have forced me to act as though I didn’t have a chemo treatment and 2 brain tumors discovered last week doesn’t mean I’m not feeling it. Those people close to me who see through the steel armor and see my pain and fear are my angels. Thank you for helping me carry it.

It’s been a challenging week. I had chemo on Tuesday. They found 2 brain tumors so I’m waiting to hear when gamma knife is scheduled to eliminate them (numbers 12 and 13 if you are keeping score at home). My mom had a bad fall at her home Thursday. We are looking for home help and help with her handicapped dog.

I assure you that isn’t all bad news. The new brain tumors are small and the Tumor Board at Barnes/Wash U decided I can remain on my same chemo treatment. That means I’m still on my first line of treatment and that is excellent news for cancer patients. My mom is strong and just needs a little help at home. She is utterly amazing for 87 and has lived alone for around 14 years. This fall won’t change that . On top of it all, I am blessed with a husband and 3 kids who are so helpful to me. And I come home to Indie and Madi, my labs who are my companions, buddies, besties, and nurses.

I realized I haven’t been specifically asking all of you, my prayer warriors, for specific prayers. I meet so many people who tell me they are praying for me and I am so grateful for that. Please add some for my mom. I also want to thank all of you who donated to the fund at the Bank of Gibson City that was started by my friend, Leanne, and those who donated privately. I had left some funds in for a rainy day and, well, it rained down this week. So you are all still helping me!

Through all this I can feel God’s presence so strongly. I hope you can, too.

Scanxiety is a bitch. I am generally calm, cool and collected – right up to the day before cancer scans. Then my alter ego appears and she is a hot mess. Dave and I are on the way to Barnes. I will have a brain MRI this morning (perhaps my 12th but I start to lose count). It’s been 20 months since I had brain tumors and I would like to keep that trend going. This afternoon I will have treatment.

I live my life in 3 week cycles first (treatments) followed by 3 month cycles (brain scans) followed by 4 month cycles (body scans). Time flies when you are focused on living every day.

I am so grateful for my close network who have met my alter ego, usually very very late at night. Dave quietly nudges her to try to sleep and reminds her we’ve handled everything together. Malinda and Kathy shower her with Marco Polo messages and texts. My brother reminds her that she is an FW (if you know, you know). Thankfully my alter ego will crawl back into her hole in a few hours and wait.

My treatment days begin with my port being accessed and several vials of blood being drawn for a host of blood tests. When I had treatment last week, one of my tests was highly abnormal – so high they actually drew another vial to run the test again to make sure there wasn’t an error. The result was even higher. My team decided to proceed with treatment and run the blood tests again the next week. They arranged for those tests to be done locally so I didn’t have to go back to St Louis.

Anxiety associated with cancer tests (scanxiety) is draining. I tell myself it is unproductive to worry. I try to keep myself distracted. I thought I was doing a great job of that over the weekend. Today I received a message that the new tests showed no issues so they have decided last week was a fluke. I suddenly felt like a hundred-pound weight was lifted from me.

It is a gorgeous evening and my girls and I are celebrating the fluke on the deck with extra dog treats. Live and love every day.

Yesterday I visited my podiatrist. The assistant asked about my cancer diagnosis. I shared only that it was breast cancer that had spread and was stage IV. She followed by telling me she has extremely dense breast tissue and they are currently “watching” and area to see if more needs to be done. I jumped on that with all guns blazing. I explained breast density and why it matters. I told her she is at a much higher rate of breast cancer because of it. I told her of my de novo diagnosis and my years of “not positive for cancer” mammograms. I told her that she must get a breast MRI or ultrasound as fast as she can and that insurance will cover it ( in our state, IL). I told her to get an MRI or ultrasound every six months. She left the room to make the call.

Why don’t women know this critical information about their own bodies? Why didn’t I know?

Know your breast density and why it matters.

Go to this website for more information.

Home

My life has been severely disordered lately – a thing a control freak despises. Last month I took my 21 year-old on a trip to Seattle. On my bucket list is a solo trip with each of my children; this was the first. It was incredible for so many reasons, but mostly because I was able to have so much time alone with him. Crossing off bucket list items is equal parts joyous and heart-breaking. I am working hard to put as much of me as I can into my kids while I am here so that they will always feel me with them when I am not.

Right before our trip someone for whom I am a caregiver had an accident but my husband and other children stepped up to help while I was gone. I returned home to a house with a puppy who wasn’t ready for her mom to be gone on a trip (again, blessings to my husband and other children for stepping up). Order was restored to life for one day and then Covid hit me – on my birthday and also the day I was supposed to receive treatment. My treatment was delayed two weeks, which terrifies me. In three years this is the only the second time treatment was delayed. The other time was a delay of two weeks due to Covid quarantine and the cancer spread to my brain the following month. We will never know if the delay caused that, but my anxiety is running through the roof these days. There is nothing I can do but wait until my next round of scans.

While recovering from Covid, our air conditioner went on life support and finally died during the hottest part of the year. It was pretty miserable here and I couldn’t go anywhere else for fear of spreading Covid. There was so much disorder created living in a ninety degree house. We avoided running anything that might add heat to the house. We have a new unit installed and I am remembering to be thankful each day for cool air and I might be caught up on laundry now.

So now, recognizing that I am not in control of my life, I am still trying to restore some order. My amazing family has declared today a re-do of my birthday. We are celebrating at my favorite restaurant. I have treatment this week and will try to put faith over fear until my next scans. I am back home with my two black labs who bring me so much joy and companionship and never tire of licking away my tears. I am a caregiver when I am able and learning to be a care receiver when it is needed. There is so much beauty in the ordinary.

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.

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.

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.

² 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.

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.

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.

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

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.)

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.

I’ve had other oases in my life.

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.

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.

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.

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.