Star Word

Each year on Epiphany my church lets us choose a star word as part of worship. This is a word that can travel with us all year as a guide or a focus. In worship today we had the chance to share our word for 2022 and how it was relevant for us. I was playing the organ at another church on Epiphany last year so I choose my own word, hope.

Because I love music so much I also love poetry. I have a journal with an Emily Dickinson poem on the cover.

Comparing hope to a bird is fitting because hope is never a heavy presence but rather something I cannot quite put my fingers on, yet I know it is always there. The ability of a bird to survive storms amazes me. On the coldest days I see flocks of birds hunting for food. Now that it is winter I am able to look up in the leafless trees to see all the nests. It takes much persistence to build a warm nest secure from the wind and rain one tiny component at a time.

On spring and summer mornings our old barn usually has several turkey buzzards sitting on top. They are not pretty nor do they make a pleasant sound. Their song reminds me of a small mammal in distress. How can hope be like a turkey buzzard?

I recently found a different perspective on hope attributed to Matthew Crow.

The very same Hope likened to a song bird is the very same courageous, rugged presence we see in turkey buzzards, hawks, owls, and eagles. Hope exists in the harshest conditions. Hope does not ask or require anything of us.

For me, hope is the opposite of positivity (a word I dislike). If positivity does not work out, it means you have lost or failed. Hope always wins. Positivity says, “You’re going to beat this.” Hope says, “I am going to fully live all the days I’m given.” Positivity says, “Stay cheerful and upbeat because that will help you remain alive.” Hope allows me to sob into my pillow in the middle of the night, yet still rejoice and thank God the next morning for being granted another day. Hope sits with me in the examining room as I wait for scan results, knowing that whatever the outcome, I will choose a path to move forward. Hope allows me to doubt and grieve. Hope allows me to falter and fear. With hope I can appreciate today no matter what happens tomorrow.

Hope lets me bury ugly dead- looking flower bulbs in the ground in the fall and rejoice at the gorgeous flowers that grow and bloom in the spring. This thought led to the creation of Heidi’s Hope in 2022. We raised thousands of dollars for My Density Matters so that women learn what breast density is and to stop the insanity of women being diagnosed with late stage breast cancer because the cancer could not be seen in their annual mammograms.

This beautiful tree sat at the front of church today and we could choose a new star word for 2023 as we returned to our seats from communion. I wanted to blindly choose a word so I reached to the back of the tree and grabbed a star. As I began to pull the star off the tree I realized another star was on top of it on the branch so I switched to the other word and pulled it off.

I still cannot believe I randomly pulled HOPE from the tree for my 2023 star word. Desmond Tutu said, “ Hope is being able to see that there is light despite all the the darkness.” My world is filled with light and I want to share that with all of you in 2023.

The good and the bad

On January 3, 2023 I had my 59th chemo treatment. Registration was extra busy receiving all the new health insurance information for the new year. I met my annual out of pocket maximum all in one day. The cost of my treatments are around $40K. That’s $40K per treatment. My husband’s job has great health insurance so my out of pocket is considerably less than that $40K bill. If you are making health insurance decisions, always look at how a plan covers the worst case scenario. You just never know.

Leaping Lords

Our planned 4:00 am departure happened at 4:19 because of my fondness for the snooze button.
6:00 am stop in Effingham
7:36 am view
My Second Home – I love this place!
7th Floor
Love the architecture
Chemo Waiting Area (with edits for privacy)
Chemo Pod 7
Settled in my recliner with a toasty blanket for my 8:00 am appointment
Had one of my favorite nurses today who is originally from Brainerd, MN. She is ready to access my port.
Let me zoom in on that needle.
I’m all hooked up now for Chemo Round LIX

Early start means an early finish. On the walk to the car we can see progress on the new Siteman Cancer Center in the works.

The Third Day of Christmas – A Photo Story

4:30 am Departure for Barnes – Dave is driving and I am settling in with a blanket for some more sleep.
The sun is up and we are leaving Vandalia, where we stopped for gas and coffee.
I never grow tired of this view.
We have finally arrived.
Skywalk from the parking garage to Siteman Cancer Center
Masks are still required here and they must be surgical or N-95. There are no exceptions and we have never seen anyone not in compliance.
After a quick stop at the registration kiosk we came here to MRI Waiting Room A.
Waiting Room Mood – We are ready to get the day rolling.
The sneakers really set off the gown.
Neuroscience Waiting Room Mood: Pensive
Neurology Exam Room Accessory
Waiting Room Mood: Yikes!
(I was taking photos all day without a set plan. When I looked at this one later it took my breath away. We were in the exam room waiting for the neurologist to come in the with preliminary results of the brain MRI. Was the last round of gamma knife successful? Is there more cancer in my brain? You cannot see that we are holding hands tightly, waiting, knowing that we face the world together. )
No explanation needed. We are heading home.
3:10 pm – We are finally home. Dave can get some sleep before he leaves for work at 9:00 pm.

On the Third Day of Christmas, my true love gave to me the care and support and love I need. We are thrilled that the tumor they treated in the fall has disappeared and there is nothing new in the scan. Merry Everything and Happy Always.

Coming Around Again

In March 2018 I joined WW. On July 16, 2019 I achieved goal weight (a healthy BMI). That was a 90+ pound weight loss. On July 24, 2019 I was diagnosed with breast cancer and learned it had already spread to my bones, liver and adrenal gland. (The next year it spread to my brain. ) I canceled my WW membership and focused on survival. I’ve described myself as a MBC thriver. Why thriver and not survivor? The simple answer is that I will not survive MBC.

A few weeks ago I decided that I need to focus more at being a thriver. A thriver flourishes and progresses. I am working with a trainer to regain some balance and mobility. I rejoined WW to reach a healthy BMI and stop my cycle of emotional eating that is related to my three-week chemo cycle. I don’t know how long my oncology team can keep my cancer controlled but I do know that I will try to live my life so that I support their efforts and my desire to grow old with my husband.

“I know nothing stays the same
But if you’re willing to play the game
It’s coming around again
So don’t mind if I fall apart
There’s more room in a broken heart” (Carly Simon)

LVIII

My 58th treatment – feels a little surreal.

Everything in cancer land remains controlled. I have a parathyroid problem and will be seeing an endocrinologist for that. Seems to be unrelated to cancer. I think that if you have stage 4 cancer, you should get a pass on all other problems, health and otherwise.

My next brain MRI is 2 days after Christmas. The only thing on my wish list this year is a clear scan.

In other news, Dave and I celebrated the 36th anniversary of our first date last week. Here’s to the next 36 years.

Glitter

I love reading song lyrics as poetry. Today was All Saint’s Sunday and I thought of Glitter by Patrick Droney.

“Glitter”

String of lights on the door
Welcome back to your life
This is worth living for
There’s so much left in store
And we don’t
Get to choose
Who we get to love
Or who it is we’re gonna lose
Or what breaks our heart in two

But no one really dies if the love remains
‘Cause nothing that dies really goes away

See grief it’s just like glitter
It’s hard to brush away
Bright light and it still shimmers
Like it was yesterday
And it falls like confetti
All of the memories explode like a hand grenade
And it’s sweet and it’s bitter
Grief it’s like glitter
Oh what a mess it makes
What a mess it makes

Past denial and the rage
The what if and the praying on the hardest days
You accept what you can’t change

No one really dies if the love remains
‘Cause nothing that dies really goes away

See grief it’s just like glitter
It’s hard to brush away
Bright light and it still shimmers
Like it was yesterday
And it falls like confetti
All of the memories explode like a hand grenade
And it’s sweet and it’s bitter
Grief it’s like glitter
Oh what a mess it makes
What a mess it makes

I think life’s a party
Something you should celebrate
Some people leave early
And others get to stay
And hearts they burst like fireworks
At the end of the parade

See grief it’s just like glitter
It’s hard to brush away
Bright light and it still shimmers
Like it was yesterday
And it falls like confetti
All of the memories explode like a hand grenade
And it’s sweet and it’s bitter
Grief it’s like glitter
Oh what a mess it makes
What a mess it makes

I’ve been struggling with anxiety and anticipatory grief. Every day I see posts in my MBC groups about another friend lost to MBC. Today in church we celebrated All Saints Sunday. I lit candles for my grandmothers and my son lit one for my dad. I thought of all the MBC friends we’ve lost. I am feeling especially weighed down lately. It hovers in the corners of my mind giving me almost constant reminders that it is there lurking. I will get it shoved back to the dark recesses of my thoughts so I can resume living. Life is a party. Some just go home early.

LVI

Greeting from Chemo Pod 5

Dave and I left around 4:30 am Monday morning to go to Barnes for my scans. I had a bone scan and a chest/ab/pelvic CT scan. We stayed in a hotel last night, which makes the trip so much more relaxing. This morning I saw my oncologist and learned that my scans were good. All the bone lesions are healing and everything on my liver and adrenal gland is stable. I am settled in Chemo Pod 5 waiting for pharmacy to prepare my infusion bags. Dave brought me Starbucks coffee and a yogurt parfait. This is chemo treatment number 56 for me.

My Whole World

We had family photos taken recently. It was a gorgeous fall day at Lake of the Woods in Mahomet when we met for the photo session. Dave and our kids (Ross, Darrin and Haley) are my reason for getting up everyday and loving life. Every single day I have is a gift and means another day to spend with these four people.

Dig a Little Deeper

There is a rather disgusting analogy involving a boiling frog. If you put a frog in tepid water and then slowly heat it to a boil, the frog does not realize it is being boiled alive. Today I realized that my cancer and cancer treatments are doing the same thing to me. I had to list my cancer side effects ( in MBC groups we call them side effucks) for a disability survey this week. Here are some, in no particular order.

Fatigue – Cancer fatigue is not like any other tiredness I have ever experienced. There are days I can barely wake up enough to take care of my dogs. I find myself walking around with my eyes closed until I can get back up to bed.

Sun Sensitivity – If my skin is exposed to UV light I develop a blistery, itchy rash. My face and forearms suffer the most from this since they are often exposed without me realizing it. I have two prescription ointments that seem to help. I apply sunscreen every day and try to avoid being in the sun. My forearms have horrid scars on them from a bad case of the rash this summer.

Hair loss – I lost all my hair for the first 6 months of treatment. Some of it has grown back. The hair on my head grows extremely slowly. I still have no eye lashes or nose hairs – and I never realized how helpful those things are when a person is outside where there is dust and pollen. I also have no eye brows, but that is a cosmetic nuisance only. I typically kept my hair long and I miss it. While it seems trivial, hair is an important part of our identity. The first hair to come back full strength was my chin whiskers. You gotta laugh.

Digestive issues – After the first 6 months, my nausea is limited. I do, however, experience the need for many, many trips to the bathroom now and occasionally it seems to not be something I can control. I’m just going to leave that there. It isn’t a party.

Pain – I cannot describe the extent of the pain. I live with it daily. Some days are better than others. I have good drugs but hate to take them because to take enough to truly control the pain, they make me groggy. The pain is a side effect of the treatment and also a side effect of having extensive bone mets. Bone mets won’t kill me but they make my life not so fun.

Chemo Brain – I have noticed a decline in some parts of my thinking. The biggest is the ability to come up with a particular word. My ability to memorize is not where it was. All our brains age, mine is just happening a bit faster from the chemo and 3 rounds of gamma knife. I play brain games on my iPad to try to stop the decline.

Anxiety – I saved the worst for last. To be fair, I inherited a lot of anxiety in my DNA and had it fully nurtured in my childhood environment. Some major events in my life helped to build it up even higher. Then cancer hit and anxiety took over my life. The blessing of high anxiety is that is makes some people (like me) be over achievers. We can never find any sense of achievement unless something is so hard we could barely get it done. Now, cancer anxiety is an ever-present voice on my shoulder. During a really happy family moment, cancer anxiety pops up to remind my this might be the last “fill in the blank” I get to see. When anyone mentions something a set time in the future (ex. Save the Date cards), cancer anxiety makes me wonder if I will be around to attend. A particularly painful day will cause my cancer anxiety to declare that the cancer is growing somewhere new. My schedule of body scans every four months and brain scans every three months mean I almost always experience scanxiety – wondering what the tests will show. A great scan only means that I have renewed my “license to live” for another 3 months (hopefully).

When I find myself in a pot of boiling water like the frog, it is time to take a step back and turn to my sources of comfort, peace and strength. And that is when I dig a little deeper to realize that my faith will see me through this lifetime, that I have a partner who wants only the best for me and will help me if I let him, that I have some close friends who I can turn to, that I have two dogs who sense when I need them most, that I can turn off my phone ringer, that I can say no to almost anything, and that there is something meaningful to be found in every day I am alive. So I am taking a break from negative people and things I don’t want to do. I am allowing myself the right to walk away from people who want to complain about everything and everyone. I don’t think this strategy is reserved for people with cancer. I highly recommend you jump out of your pot of boiling water, too.