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.

Pinktober

October is Breast Cancer Awareness Month and is difficult for most metastatic breast cancer (MBC) patients. Everywhere you look there is pink and pink ribbons. Every glance at that pink ribbon is a reminder that our breast cancer is different (terminal). Savvy consumers need to look into the details of a “pink ribbon purchase.” How much of the proceeds go to charity? What is the charity? Sadly there are many products out there that have pink ribbons on them with no significant contribution being made to breast cancer.

My social media feeds and my email inbox are nearly filled with the topic of breast cancer. I follow numerous MBC organizations and have been blessed with the friendship of so many women with MBC who I have met within support groups and our advocacy work. I have to work hard to escape MBC when I need a break.

I crashed into the wall last week, so to speak, and dropped into a pit of despair. It has taken a lot of TLC from my family and inner circle of friends to bring me back up into the light. ( Therapy and prescription meds are also valuable.) Today is my 55th chemo treatment. It means I’ve endured a lot, but also have a lot more to endure since my treatments will never end until I do.

This is Hyde who thinks the chemo experience would be better if she could hear the cancer cells screaming.
This is Heidi who has faith that God is with her through this journey and has hope for many more years with her husband and kids.

Crafted with Care

Soon after my diagnosis my friend, Taryn, crocheted a bunch of hats for me. She asked what some of my favorite colors are and went to work. I’m still wearing them today, one because they are adorable and two because my hair has not grown back like “normal” hair yet. When I reach into my hat drawer and choose one, I think of Taryn. I think of all the time she put into these hats. I feel loved and supported.

Taryn has an Etsy store. It’s name is the title of this post. Check out her work.

A shadow cannot exist without the presence of light. 

My third gamma knife procedure is behind me. The latest brain MRI showed only one new spot. The other spot was previously treated and does not need any more. I’m staying on my first line of treatment. Neck-down scans are scheduled for Halloween. My next chemo treatment is in two-and-a-half weeks. I am anxious to get home to the farm and my pups.

The head frame is secured with 4 screws that go into my skull. Fighting cancer is not for the faint-of-heart.

Thank you for all the messages and prayers. I am surrounded by God’s love.

Can I help you carry that?

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.