Two Years Blogging

My second year blogging is in the books. I’ve explored expressing myself a bit more through personal narratives and even poetry. I’ve covered a variety of topics. I hope I have made connections with readers as I’ve shared what goes through my mind and in my life as someone living with metastatic breast cancer.

There’s no need to have cancer in your life to read it and get something out of it. Not everything I write about is specific to the cancer experience. Themes of fear, trust, and identity apply to all of us. Memories of joy or moments that teach an important life lesson reside within all of us. However, it’s often when I appear to veer off the cancer path with my writing that I come back to say something about the cancer experience. Maybe I’m only speaking to me. Joy is important for anyone with metastatic cancer. Memories can be bittersweet, hopefully mostly sweet. Life lessons help us embrace the now. Some of these lessons are difficult to embrace. Maybe they help us understand our now one lesson at a time.

I am always interested in growing my audience. Please share my blog with anyone with whom you think may benefit from it. I also want to take a moment today to thank you for reading and sharing your comments. I love reading them and you are always welcome to leave a comment at the bottom of these posts. Today, I’m interested in if you’ve had a favorite post over the last year. I have many favorites, but know I am biased.

Recently, I received a few compliments on my blog’s title, Finding A Way. It conjures up many thoughts in my mind. If at first you don’t succeed, try, try again. If there’s a will, there’s a way. Look at a challenge from multiple perspectives. Approach something in a new way. Venture outside of your comfort zone. Find a way to get it done.

Find a way.

There have been some remarkable things I have attempted while living with metastatic breast cancer. I figured out how to keep teaching for four years after my diagnosis. I’ve discovered new ways to enjoy exercise. I’ve developed hacks for when things are hard. I’ve found a way. Maybe it isn’t always the best way or the easiest way, but it is a way.

The phrase “finding a way” is defined as having an opportunity, or an intention, to arrive at a specific outcome. That definition fits the vision I continue to have as a mantra in my life. My blog’s title got me thinking about other expressions that are essentially synonyms for it. It turns out there are dozens of substitutions. Some fit better than others. Some were noted as more common in the UK. Some are positive. Quite a few have negative connotations and that surprised me. Apparently, finding a way can be by hook or crook. Wordhippo.com is my source. See what you think.

Synonyms are listed in no particular order but tend to follow the order from Wordhippo. I understand if you skim them since there are many.

Getting, contriving, arranging, engineering a way, managing, succeeding in, organizing, working it, fixing it, compassing, coordinating, designing, maneuvering, swinging, swinging it, setting, orchestrating, making arrangements for, fixing, fixing up, setting up, pulling strings, pulling wires, sorting out, seeing to, finagling, framing, negotiating, machinating, manipulating, finessing, masterminding, elaborating, developing, executing, shifting, angling, cogitating, achieving, projecting, jockeying, hitting upon, carrying out, playing games, effecting, wrangling, passing, plotting, scheming, devising, conspiring, intriguing, conniving, colluding, planning, hatching, cooking up, operating, being in cahoots, collaborating, hatching a plot, concocting, faking, fabricating, rigging, forming a conspiracy, laying plans, shamming, abetting, exploiting, manufacturing, promoting, getting in bed with, coming up with, controlling, falsifying, simulating, feigning, conducting, handling, bringing about, pulling off, conceiving, constructing, staging, scamming, doctoring, tricking, wheeling and dealing, and conning.

The list goes on, but I think I’ve listed plenty.

One word that didn’t appear that struck me as strange:

Believe.

Finding A Way is about believing. Pure and simple. Unwavering. Unconditionally.

Shall I change the name of my blog to embody ideas of conniving, plotting, or scheming? Nah, it’s better to stick with ideals like succeeding, achieving, and developing. I will keep the title as is. It works. Onward to a third year of finding a way. You know what’s coming . . .

Always.

Ice Cream Memories

Good memories are sweet like ice cream.

My ice cream specific memories from past vacations are vivid enough to eat.

Dippy’s is a small ice cream shop in Fish Creek, Wisconsin, offering about 20 flavors daily. It’s a simple whitewashed building for to go service. There is a small porch outside with patio seating for relaxing and looking at the flowers and passersby. An old-fashioned red popcorn machine is positioned just outside the door for those preferring kettle corn reminiscent of movie theater popcorn drenched in butter flavoring with lots of yellow food coloring.

Dippy’s was a place to take a break from all the other relaxing being done on vacation. It was a good mid-afternoon or early evening treat. The fact that it was a few mere steps from the corner hotel where I stayed didn’t hurt.

There is something about an ice cream store that makes me feel like a kid again. I thought this was as true for my mom as it was for me. She would sit in front of the store in one of the wrought iron chairs wearing her shorts that came to her knees with a smile from ear to ear. She possessed something childlike even though she was into her seventies.

She always apologized that she couldn’t share her butter pecan or turtle ice cream because of my tree nut allergy. It didn’t bother me for the same reason I never offered to share my ice cream with her. All free sampling was done inside at the counter.

Rules are rules.

My grandma enjoyed ice cream into her nineties. Grandma would have a bowl of ice cream often during the evening on the farm. One thing I’m completely convinced about is the existence of an ice cream gene and that I got it.

Both my maternal grandmother and mother died from metastatic cancer. My grandma was diagnosed with liver cancer. She didn’t go through gads of scans to see if it spread and chose not to do treatment. She was 96 years old and only lasted a few months after the news, so I don’t think it’s unreasonable to believe she had metastatic disease. Anyway, genetic testing has revealed zilch in terms of the metastatic breast cancer in my body being inherited. I wonder if research hasn’t yet discovered the link.

Back to happy memories of ice cream because those memories make me feel happy. They take me back to a simpler time that was relaxed and unrushed. A bit of that feeling is captured whenever I enjoy a scoop or two. Sometimes those memories take me back to as recent as last week and other times much further.

Some memories take me back to summer nights in early childhood. People sat outside after supper just to relax. My sister and I would sit on the front step of the house in the humidity enjoying a bowl of ice cream before our bedtime stories.

In my childhood, I was a chocolate or vanilla person. Discovering mint chocolate chip made me feel pretty sophisticated. I still love mint chocolate chip, but favorite flavors also include cookie dough, coffee, and chocolate peanut butter.

Chocolate peanut butter was recently enjoyed on a lovely summer day.

I love moments of simplicity. I’ll take every single one I can get living with metastatic breast cancer. Memories that make me smile are delicious. That’s true whether I’m sitting on the front stoop as a child, outside at Dippy’s, or sitting along the waterfront outside Wilson’s Restaurant  in Door County slowly working on a double scoop while watching the sun dip below the water. It holds true if I’m home enjoying a dish.

Even Snoop Dogg knows ice cream is a good thing. Only Snoop knows his plans for the future, but maybe he was serious when he said, “When I’m no longer rapping, I want to open up an ice cream parlor and call myself Scoop Dogg.”

He would get no complaints from me.

Is all this just about ice cream? Yes and no. Sometimes ice cream is just ice cream. Ice cream is surely one of the better things in this world. You’re never too young or too old for it. There is a flavor for everyone. It’s a simple pleasure.

It also can be a metaphor for life.

Ice cream melts quickly.

Enjoy it before it’s gone.

Side Effect Smorgasbord

Side effects from cancer treatments often feel like they are heaped onto an overflowing plate from a smorgasbord at the cancer cafe. Every treatment comes with a long list of possible effects with the caveats that most people don’t experience all the effects and they range in severity. That’s true enough. I’ve experienced many of them over time due to the reality of being on multiple treatments. The list below is not complete. Side effects I’ve had the displeasure of having include:

  • Nausea and vomiting
  • Hair loss
  • Fatigue
  • Neuropathy
  • Insomnia
  • Mood changes
  • Higher risk of infection (low white blood cell counts)
  • Anemia (low red blood cell counts)
  • Easy bruising and slower healing
  • UTIs
  • Chemo Brain
  • Appetite changes
  • Weight changes
  • Diarrhea
  • Constipation
  • Hand foot syndrome
  • Dry skin
  • Dryness of mucous membranes
  • Chemo induced menopause

An entire separate buffet needs to be set out to adequately serve all the undesirable dishes that accompany chemo induced menopause. Sexual side effects are a big part of menopause. Entering it as a chemo induced experience brings some unique spices and flavors to the smorgasbord. Fortunately, there are ways to address these effects so women are more comfortable and happier.

Emotional side effects like anxiety, depression, grief, and identity questions may not directly be caused by a cancer drug, but they certainly can develop or become magnified from diagnosis, throughout treatment, after treatment, or carry into what’s next. Trauma also can develop from a myriad of cancer moments. These are available at the smorgasbord and it’s all you can eat. 

Addressing mental health side effects are just as important as addressing physical side effects. No, a person doesn’t have to suck it up or get over it. Positivity is not a cure all. I may not feel like gutting myself emotionally and exposing all my pain as a casual conversation. Someone may look just fine on the outside and be struggling within.

Unfortunately, I have added a new side effect to my list in the past month:

  • Mouth, tongue, and throat problems such as sores and pain with swallowing

Fun fact: a person can’t swallow and breathe at the same time. I have had three of these esophageal spasms, triggered by taking oral medications and supplements. I’ve described it as comparable to a swallow getting stuck but there is nothing causing an obstruction. It feels like I imagine a heart attack would because I can’t breathe. Scary isn’t a strong enough word. And it’s painful.

It’s a triple F moment for sure.

The same week as one of these spasms, I discovered I had mouth sores. They were on the inside lining of my mouth in both cheeks. Perhaps as far back as my throat. No wonder my mouth hurt! It explained my ongoing pain and difficulties eating and speaking in addition to swallowing. I called the triage line two days in a row. The previous day I called because my throat still hurt from the spasm episode and I discovered one whole pinky toe had turned into a flaming blister. The blister is a sign of hand foot syndrome. It turns out I need to keep rinsing my mouth throughout the day with warm salt water and keep my mouth as clean as possible. This easy at home solution worked quickly and the sores have resolved. Omneprozole is successfully preventing any more spasms.

Drugs are often prescribed to deal with side effects and they also have side effects of their own. It becomes a vicious cycle.

Serious side effects (more serious than those covered) like heart, liver, and kidney damage can also result from cancer treatments. The term side effect seems like it’s lacking when major organs can suffer permanent damage.

So . . . which side effect is the worst?

Whichever one is happening at the present moment.

Rarely are side effects ever on the side.

This smorgasbord sucks. I want to order off the menu and go straight to desserts. Ice cream sounds delightful.

Consider responding:

  • I know my list is not complete as there are side effects I’ve dodged. Please share others if you’re comfortable.
  • What side effects have you found challenging? What has worked well to manage them? Please add your comments so others may benefit.

Scalp Cooling and Cancer

Using a cold cap marks another first for me.

It’s my third time facing a treatment that has a strong (almost certain) chance of hair loss listed as a side effect. Total hair loss was a sure thing the first time I needed chemo. I went to the salon and had my head shaved. I had a wig but didn’t plan on wearing it. It didn’t look like me, feel like me, and it felt uncomfortable. I felt I retained my identity in a head wrap.

Cold caps at this time were being used in Germany but not in the U.S.

The second time where I was likely to experience hair loss was when new treatment followed oral capecitabine where my hair had already thinned considerably. My next line of treatment was likely to cause me to lose even more. This time around, I looked into cold caps. Some had been FDA approved and were being used in the U.S. I wanted to do it. The more I learned, the less of an option it became. Caps needed to be changed every twenty minutes. You needed someone to help change the caps. It needed to be worn before and after treatment – how long depended on the specific treatment you were receiving. I learned I would need to wear the cap a couple hours prior to and after treatment. I lived alone and I doubted I was going to find anyone who had full days to devote to cap changing. I also learned a person still lost up to half their hair. I didn’t have any more to lose since I already felt I had lost about half from my previous line of treatment. It was too much effort for something that maybe would sort of possibly work hopefully a little bit. I didn’t shave my head. I decided just to let hair fall out if it was going to. Most of it did with effects similar to if I had shaved it. I opted for a wig. I could avoid stares when out in public. It suited me. I felt like me. It was comfortable. I felt more normal and like myself.

I wigged for three years.

I finally had my hair back by last November. I love how it feels. It’s been a beautiful mess during the time quarantining during COVID. I found that ironic that I had all this lovely hair that no one ever saw and I couldn’t get done.

God sure has a sense of humor.

Then came the blow that I needed to change treatments and the best option would probably wipe out my hair for a third time. I didn’t want to see my hair go again. The emotions and tears attached to hair loss are intense. I decided to revisit the cold cap world and was somewhat relieved to learn there is now a machine at my treatment site provided by Paxman Scalp Cooling that a patient pays out of pocket to use. Please note my only connection to the company is as a customer using their product.

Everything is managed while you are on site receiving treatment. Nothing needs to happen at home. You are hooked up to this machine that pumps and keeps the cap cold. A nurse gets you ready, secures the cap, and runs the machine. You eventually take over and get ready on your own.

Why do I write I was only “somewhat” relieved? I still had to willingly freeze my head for a shot at keeping some hair and pay for the privilege of doing so. It still was probably going to thin, but I’d be starting with a full head of hair this time.

I would take a shot.

Cold caps or scalp cooling systems work when the scalp is cooled to reduce the amount of chemotherapy that reaches the hair follicles. The hope is hair may be less likely to fall out if less chemo gets there.

My head isn’t really frozen. The scalp is brought down from around 98.6°F to between 64°-72°F. It wasn’t an all over football Saturday in November kind of cold. It was more of an unnatural numbness of combined cold and heavy sensations that you could still feel. It does get better.

Time is broken down into four parts. There is a 30 minute pre cooling time to get your scalped cooled and ready to receive treatment. Doxil (doxorubicin liposomal) is what I’m getting and that takes 60 minutes to infuse. Then there is a 60 minute post cooling time period. Lastly, you thaw for about 15-20 minutes so hair isn’t ripped out of your head that is frozen to your inner cap when you remove it. It all adds up to just about 3 hours from start to finish.

I hope you agree it doesn’t suit me. I assure you it is not comfortable. I want to keep being the me that I see in the mirror. I’ve been told I look like a pilot or an astronaut of the past. And yes, I know my mask matches my eyes.

What is it like?

It’s rather hilarious the process is called scalp cooling. I think the word cooling is used for some type of psychological effect. The machine was turned on and there is a whoosh of cold filling the cap. Seconds tick by and it indeed gets intensely cold in an instant.

A person is forewarned that the first ten to twenty minutes are the worst. After that, the scalp is numbed enough so it doesn’t feel as cold. I want to be crystal clear on what I feel. Fear fills almost every fiber of my being as I fight through the first ten minutes of each session. I wonder if I can get through this torture I’ve willingly chosen. The feeling of desperation is almost more unbearable than the intense cold. I have fought back tears for the few minutes every time. My tolerance for pain and discomfort is quite high. Living with metastatic breast cancer does that. I can barely keep it together.

But then I acclimate and focus on other distractions to pass my time.

The cold didn’t bother me as much as the tightness and chin strap. The chin strap is the worst part and almost intolerable. The covering worn over the cap must be kept on tightly so that the inner cap stays snug on your scalp. This makes it hard to talk and eat because it’s that tight.

Wearing a mask added another layer to my discomfort.

Feeling a little sick added yet another layer. I was fighting it and waffled back in forth from the root cause of feeling light-headed and woozy. Was it the drug? Was it the cold cap?

Both? Or was it just all in my head?

After I was disconnected from the Paxman cooling machine, there is a thawing out period of around fifteen minutes before the cold cap is removed so your hair isn’t adhered to the cap when taken off. Getting the chin strap released helped a lot.

Nurses are special humans. No ifs, and, or buts about it. I wasn’t feeling so hot after my first session. My lovely nurse gave me a head start to go get the car. Meredith wheeled my carry-on suitcase outside to the drop off lane and waited for me there so I wouldn’t have to lug it all the way to ramp and up flights of stairs. I still had two bags to carry on my own. Scalp cooling requires me to bring much more to my sessions.

How’s the cap working?

I’ve told very few people I’m scalp cooling. I wanted to see what happened. Nor did I see the point of a grand announcement since I don’t go very many places thanks to the pandemic. My new treatment qualifies as one that causes immunosuppression. Even fewer people see me.

I have had two rounds of Doxil (doxorubicin liposomal) so far. Cycle two went more smoothly. I didn’t feel sickish from the drug or the capping experience. Time passed a little more quickly. I am expecting each time to feel easier. I know what to expect and how to manage it all.

Success rates vary with different treatments. Paxman considers the cap successful if you keep 50% or more of your hair. My bar is higher. I want minimal loss with no visible bald spots. I’ve seen many pictures of women with bald spots on their crowns. Seeing these discourages me. Time will tell. Shedding is expected. Lots of shedding apparently.

Shedding is normal. Normal shedding is normal. There is NOTHING normal about chemo. Absolutely nothing. The bald spots on someone’s crown and other places on the head are referred to as shedding. Shedding on chemo goes far beyond normal shedding. A person is bald. My definition differs from Paxman.

Maybe I’m splitting hairs.

When a snake loses its skin, new skin is there to take its place. It’s not even a close call. A snake doesn’t have some bare spots where new skin didn’t develop. Shedding crosses a line quickly with certain chemos and it becomes hair loss. Call it what it is.

I should be wearing a wig or wrap by now if I weren’t scalp cooling. It’s been 45 days since my first cycle with Doxil. My hair doesn’t feel the same or look the same. I can wash it only weekly. There are many cautions against styling it. I am to refrain from getting it colored or cut. I even need to be careful combing it. But I still have it. I will count every day I have it as a win. So far, I’ve experienced minimal hair loss (or ahem, shedding).

I am fed up with accepting hair loss in my life. I’m hoping this third time is the charm and I have found a way to keep it.

If not, you’ll see me sporting a variety of looks and you will know it isn’t working as well as I hoped.

A bit messy, but a realistic look for me. So far, I’m hairy happy with the results.

During, Now, and Next

I often read about someone’s cancer experience in terms of before and after cancer. I also often read that there is no after for those living with metastatic breast cancer because we will always be in treatment. Extreme outliers push what is possible. They keep living with cancer year after year. People living with metastatic disease need words that aren’t in terms of before or after.

I prefer during, now, and next.

A Brief Look at Before Cancer

Before cancer was a golden time of no worries. People lived with no physical limitations. They had job security and careers stretching out ahead of them. Dreams were plentiful and ranged from travel, starting families, professional accomplishments, and personal goals. Normal life expectancies were part of the plan. Life was busy with many friends. Five-year plans were achievable and plans were made for the future without doubting the future.

I felt as others did.

Life was good then. I knew it, but I didn’t realize how good I had it.

I didn’t know the meaning of a bad hair day.

I liked October.

Thoughts About After Cancer

For many, after cancer means getting back to normal, returning to work, growing hair, and putting cancer forever in the past. Survivors post side-by-side photos of their cancer days when they were bald next to photos of a year post treatment when they feel they are once and for all done with cancer where it no longer looks like they ever had cancer.

Life after cancer may mean changes in diet and exercise. Maybe there are new considerations for returning to work or career changes. Life may bring changes in income, changes in health insurance, and changes with how bodies look. There are some who reclaim their past and work to make their life after cancer as much like their before cancer life as possible. For some it means continued support groups, giving back to cancer organizations, and participating in other ways to make a difference in the cancer community.

October becomes a month to celebrate the wonderful and misleading world of awareness. A few reminisce about their cancer days almost as if they were remembering summer camp or a crazy story from high school. I figure it’s easy to reminisce when you are on the other side and treatment is done. There are plenty who see cancer far in their past and it doesn’t affect day-to-day life one bit.

Before cancer is only a memory. After cancer is in the present. After cancer is the future.

It’s a strong possibility I would feel the same if I were in their shoes, but I’m not. I don’t know what it’s like to be “cancer free” as they say. I think it’s the same as how someone without cancer doesn’t know what it’s like for someone with cancer. Those of us with cancer don’t even completely understand what it’s like for another person with cancer. We come close. We can identify and empathize with emotional and physical pain. I have been fortunate to connect with many who write exactly what I feel. I think of these people as my friends even though I haven’t met them.

After cancer means returning to normal or the so called new normal.  In my opinion there is no normal or new normal. I describe my life as a new abnormal and wrote about it in an earlier post you can read here.

Long Ago

It’s hard for me to remember my before cancer days. It feels like another lifetime. I have grieved those days as I would a person. Grief resurfaces with some memories of the past. My eyes water lately when looking at old photos. Who was that person that used to be me? It was someone with dreams that have been shattered.

Even photos from childhood cause some sadness.

Teaching was a huge part of my adult life. I am so far away from those days now that it’s hard to remember elements that were driving forces. So many faces have changed where I taught.

Even some memories of my mom, dad, and grandma have drifted almost too far away. I hate that and I miss them.

What was it like to have boundless energy? What was it like to see my future?

I can’t remember.

The world of before is out of reach.

During, Now, and Next

Good words I use to mark time are during, now, and next.

During is like an umbrella held over now and next. It’s all the time from diagnosis onward. It includes a lot of enduring cancer related life like scans, labs, other tests, office visits, treatments, and waiting. Too much time is filled with enduring cancer when treatment days, side effects, and large chunks of time filled with anxieties or sadness take hold. Instead of after cancer I have an undefined during.

During cancer isn’t all bad. I still taught for four years during cancer. Many are able to keep working. I still live independently. I am still active. I still take vacations (just not presently). Many do all these things, too. Many retire and tell others they finally get to do whatever they want because there is no schedule to keep or boss in charge. I don’t do whatever I want because my health can get in the way, but I try. Living well while living with cancer is possible.

During cancer is a time where nothing ever lasts. I’ve lived in this time labeled during so long that I feel like my life before cancer was lived by an entirely different person.

At my core I still have the same values and main personality traits. Cancer has exaggerated some of them. I have more anxieties and more sensitivities. I am quick to cry. Heck, I’ve cried writing this post. I am more intense and more driven which I possibly could attribute to aging and becoming more confident. I put more emphasis on hope and kindness. I can still crack a joke in the midst of personal misery.

Now is an excellent word. Living in the now enables me to focus on the present moment. I appreciate my wildflowers. I listen to the rumble of thunder. I walk barefoot in the grass. I drink refreshing pink lemonade. Now is where I find joy, hope, and positivity. I work hard not to let anything crush my sense of now. I try to enjoy each day. There is always something. Waking up to greet a new day and gratefully closing my eyes to dream at night are bookends for every day.

Now is the present. Savoring the moment when moments are good stretch out my enjoyment. I savor my breakfast. I savor walks in nature when I’m surrounded by trees and see the sun shining though the leaves. I savor gentle breezes on my skin. I savor laughing and feeling loved. None of these moments can be bottled. They can be replicated as often as possible. Many moments living in the now make up a day. It’s where I live when days are good. Those days add up. I am very lucky for the now I have carved out and the now where I live. Now is all I really have. It’s all any of us truly have.

Living my life involves multiple treatment plans. The word next comes into play when I switch to the next treatment. It also applies to my next cycle of whatever current drug I’m receiving. My treatment visits number into the hundreds. Life is filled with more worries and anxieties. I worry I’ll never again have hair when I’m without it. I worry I’ll soon lose it when I have it. It’s one of my big current worries.

Next is my future. I think about next week or next month. I think about my next piece of writing. I think about what I want to work on next with my trainer and my next physical goal. I have goals for next year. I cautiously make plans knowing they may change. I make them with the intention they will happen. I even think long term because that is energy I want the universe to have. I envision a positive and healthy future because I’m not willing to give up dreaming of my future. It may not be the future I planned before cancer, but it is mine now.

I apologize if this all sounds a bit disjointed. These markers in time are fluid and won’t hold still. Referring to words as nouns that usually function as other parts of speech may not come across in the way I hope they do. Living during metastatic breast cancer means living in an ongoing state of flux. I need sets of words to help mark different spots in the spaces where I live. During, now, and next are working well for me.