Cancer Words

Words can cause comfort or discomfort, happiness or tears, calm or incite. What upsets one person may not phase another. Words in the cancer world are no exception. Today, I look closely at a few of these words that bother me or cause debate among those who live with or have experienced cancer.

Cancerversary

Cancerversary is not one of my favorite words. It is used both by cancer survivors and those living with metastatic disease. For survivors, cancerversaries mark one more year of a return to health, one more year away from a bad dream, and one more year far, far away from cancer. One childhood friend once referred to her cancer experience as a blur. My life before cancer often seems like a blur. I often find these people seem to define a cancerversary in terms of good health. Photos and comments concerning cancerversaries are happy.

Cancerversaries mean something different in the metastatic community. Degrees of health vary. Some see improvements from year to year. Some are stable. Some notice declines. The following year is a hope but never a certainty. There is joy in seeing another year. Understandably, there is sadness because so much has been endured and the future is a big question mark. Happiness still exists, but it is different. Perhaps I can explain the difference of seeing someone else play with a puppy and being able to play and snuggle with a puppy yourself. A photo of a puppy is different from one in your arms that’s napping or licking your face. We can all love puppies but have different experiences with them. Levels of joy with cancerversaries for those with metastatic cancer are different.

I represent only one view, my own. One thing I learned along the way is that everyone brings their individual experience. Everyone’s opinion has value. When I hear the word cancerversary, I think of wedding anniversaries. Wedding anniversaries are happy days for married couples.

Not all anniversaries are celebrated. Some are endured like those that mark a diagnosis, a divorce, a death. We mark the bombing of Pearl Harbor and observe the terrorist attack on 9/11. COVID death benchmarks are marked with a heavy sadness. Flags are lowered. These dates show there are events attached to the word anniversary with tragic loss of life. Perhaps the word cancerversary isn’t so out of place. I’ve accepted this term as I’ve evolved to a place where I’m not going to spend energy arguing over a word. I am fine with whatever term others want to use. You can’t tell someone else how to feel and there are feelings attached to the words we choose.

I’ve called them survivorversaries since I was diagnosed. The word survivor has different interpretations in the metastatic community as well. It works for me. In the same vein that a wedding date is celebrated, I can get more behind honoring my surviving another year. I won’t celebrate cancer which is a big part of why the word cancerversary rubs me the wrong way. I’d like there to be a couple moments where I can focus on the fact that I’ve stayed alive up till now and not have the cancer word slip in uninvited. I acknowledge the day. I do share with others that I’m past the median 2-3 year expectation and well past the dismally low 5 year survival statistic (28%). But it’s tough when most people I know who were diagnosed after I was have already died. Survivor guilt can be heavy to carry. I look to people who are still around and living well at ten, fifteen, and twenty plus years with metastatic disease. Since I’m examining words, the word unicorn has been used to refer to these people. It is similar to an outlier and pretty spot on for what it represents.

Still, when that looming date arrives once a year, I do something special for myself, feel a sense of achievement, and march onward to the next big date. I may light a candle. It’s a good day for reflective writing. It’s a good day for a treat or a good workout. I’ve been lucky enough to see my first robins of the spring return on my survivorversary.

The term Diagnosis Day is growing on me a lot. It’s factual. It doesn’t feel like it needs to be celebrated or grieved. There isn’t a prior association to an anniversary. It’s just there. Its meaning is clear without explanation. It’s not a mouthful like survivorversary. I’m going to start using Diagnosis Day more and more. My Diagnosis Day is March 14th.

Yes, today.

Nine years.

Survivor

The word survivor rubs many the wrong way. I don’t mind this one as much. The issue with this word seems to be metastatic people are included in survivor language to a point until we aren’t welcomed in a conversation, group, or study because of our status. The second I was diagnosed I became a survivor. When I’m no longer surviving, I’m no longer a survivor. One size does not fit all. Others prefer words like thriver, endurer, haver, metser, or refuse to be labeled at all. I haven’t really found a term I feel suits me. I just want to be me and not always the person with cancer. It’s hard to escape from since I go everywhere I am. Go figure.

I commented recently a new word was needed to replace thriver and now I think better of it. A new label is the last thing we need. I think thriver may have started out with positive connotations because it differentiated from survivor in a way that was meant to be a compliment. Thriving means something is flourishing or prospering. Surviving, thriving, striving, etc. all have positive enough meanings that sour when attached to cancer. Not everyone feels they are flourishing who lives with metastatic disease. It doesn’t take long for a word associated with cancer to take on negativity. Cancer takes perfectly good words and ruins them. Look at the word pink. It’s a perfectly good word until used in conjunction with breast cancer. Then it becomes a debated and sometimes hated word and color.

Battle and Fight

Battle imagery bothers me. Again, it probably started out as a way to honor or pay tribute to someone who had died much as we would honor a fallen soldier. The problem is most people who die of cancer aren’t soldiers. I know there are some. Saying someone lost their battle or fight to cancer is disrespectful. There is not a winner and loser. When someone dies who has cancer, so does the cancer.

Isolating the word fight itself somehow doesn’t annoy me as much. It’s used in many different contexts. Siblings fight. Football teams fight for an inch of yardage. We fight (stand up) for those who can’t fight for themselves or for core beliefs. Politicians fight. A lot. You bet I’m fighting to stay alive. I’m certainly not resigned to whatever fate falls to me. I fight in some of the typical ways, but I also fight with hope and joy. I fight with knowledge, science, and research. That gets hard to explain to others because you don’t throw a punch of hope or pummel joy. Just as people get to choose what they’d like to be called, we can choose how we fight.

What works instead of battle or fight when someone dies? Just say died like you would when others die. If the person is still living, then say they are living with cancer rather than battling or fighting cancer. I’m living. The name of my blog is Finding A Way – Living with Cancer and Living Well – not Fighting Cancer and Fighting Well. I can’t even imagine it.

Journey

Journey is the word I find most annoying. Sometimes I wonder if smoke doesn’t fire out of my ears when I hear someone talk about their cancer journey or refer to my journey. Cancer isn’t a vacation, adventure, trip, odyssey, or journey. My former oncologist referred to unpleasant developments as new territory. I often replied I was staying put in my own territory and he needed to get himself back to where I was. The only travel motif that even slightly works is passage. Passage can be part of a path or journey (groan). That would mean cancer is a way to move from one place to another. It’s more of a transition. What that transition means is different for everyone. I feel I’m in constant transition. A state of transition can be either fluid or final.

If stumped for a word, just say cancer is part of someone’s life. Nothing else really works because of all the negative association. It isn’t a chapter, an act, inning, quarter, course, gift, or any other metaphor to mask someone has a scary, awful, life-threatening disease. It certainly isn’t a journey. A dream vacation to Tahiti is a journey worth taking. Weekly trips for cancer treatment are not the same. The weekly trips are highly worthwhile because I like breathing, but I’d love to wake in an overwater bungalow and swim in warm turquoise waters. Cancer is a part of my life.

Abigail Johnston (who writes No Half Measures) has used the word experience instead of journey. A cancer experience is to the point and its meaning can cover a wide spectrum of experiences whether they are good or bad. I referred to my friend’s time with cancer as an experience earlier in this post. Experience is a word being used by many these days. Cancer experience is going to find its way into my vocabulary more and more in the same way as Diagnosis Day. My opinion is these are better words.

Words carry a lot of power. I don’t think I’m going to change anyone’s mind about their personal preference. What I can do is communicate what words I prefer and use them on my Diagnosis Day and all the days I am living with cancer.

Are there words in the cancer world you wish would disappear? Hopefully, one day the word cancer itself can disappear.

Top Ten MBC Supports

While I was out walking the other day, I passed the home of a student I had taught a few years back. I’m still friendly with the student’s mother and she was out working in her yard. Our paths have crossed more over the last few months. We have some similar interests and both like supporting our community. On this particular day, she shared that a cousin out in New York City had been diagnosed with metastatic breast cancer. Active. Mid-thirties. A new mother. It’s unbelievably hard to process at any time in a person’s life, but I understood it was hitting her really hard during COVID-19 in a geographic area that has seen astronomically high numbers of cases and deaths from the virus. I am calling her Marcie which is not her real name.

I know what’s like to be going through active treatment during a pandemic in Wisconsin. My lens is what I experience and what I see through network news. I don’t know exactly what life is like for Marcie, but I empathize. I know far too well what it’s like to have life repeatedly turned upside down. My friend asked if there was anything I could share with her that she could pass on to someone newly diagnosed with stage iv breast cancer. We talked a bit longer and I said I would message her a couple of ideas.

I found I couldn’t limit it two or three tips as I thought about what to send. There are many things I’ve done over the years. Some pieces fit into my life better than others. Everyone has their own list of what works for them. I thought about what worked for me, what still works for me, and came up with a top ten list that I sent my friend. Marcie and I are now in communication. I share my list as today’s post.

Top Ten MBC Supports

  1. Take a health journal with you to appointments. Use it to note vitals, take notes, keep a list of questions, document side effects, file test results, etc. I am on my third binder. My notes helped me understand appointments better, remember them, and sometimes I needed them if my oncologist said something that I found contradicted something earlier. A health journal provides a source of accountability.
  2. Consider buying Radical Remission by Kelley Turner. This is the top book I’d recommend from all the cancer ones I have read. I heard she also has a podcast. I haven’t listened to the podcast. I am cheating a bit with this point because it contains much of the advice you would suspect to hear on nutrition, stress, and more. It examines 9 factors that long term survivors have in common.
  3. Belleruth Nepartsek has a guided imagery CD that I downloaded early on in my diagnosis. It was called “Fight Cancer.” I listened to a guided imagery segment and an affirmation segment daily. I am sure she has several guided imageries. The one I like involves a real or imagined place outdoors where you are surrounded by supporters that you know or may not know. It was often in the afternoon when I felt fatigued and I would fall asleep as I listened. I still listen to it every so often. I find it empowering.
  4. Comfort foods are good. When you feel sick, you need to eat what keeps the vomit demons at bay.
  5. Exercise as you are able. Even if you don’t feel like it. Try to do a little walking every day to keep moving. I wasn’t always good at this. Now, it is a priority every day.
  6. I found essential oils helped with anxiety and nausea. They are not to be ingested. Just inhale. Lavender, peppermint, and spearmint work well for anxiety and nausea.
  7. You may have to set boundaries with others on what you need and don’t need. It’s okay to say no thank you. Don’t feel pressure to accept invitations or share information just because someone asks insensitive, none of their business questions.
  8. Some people you may not know very well will rise up and sincerely support you. Let them in. Keep in mind those boundaries. Some people you’ve known for years, perhaps some family members and close friends, may disappear because they honestly can’t handle your situation. Let them go.
  9. Advocate for yourself. Ask questions. Be persistent. Be knowledgeable. These qualities make you an assertive and strong patient – not annoying or difficult. Look into your rights as a patient. Know your rights.
  10. Ignore statistics whenever possible. You are not a number. I was given literature to read before initial treatment even started. I could see it contained percentages on survival rates . . . and I threw it out unread.

Bonus Support

I forgot maybe one of the most important things I’ve internalized . . . DON’T GIVE UP. There is a lot of research happening on the metastatic breast cancer front. Ask about it. Research the research on your own. One of the best things I did was some special genetic testing through FOUNDATION ONE that identified some new mutations in cells. Mutations that can be targeted.

Don’t give up. Keep searching to find a way.

Always.

8 Years

Spring is a hard time of year for me due to a few tough dates that come around once a year. One of those dates has arrived. It takes me back to a late afternoon. I had arrived home from work and the phone rang.

It was the “you have cancer” call.

March 14, 2012.

My diagnosis day.

I mark the day and call it my survivorversary.

It acknowledges and commemorates. I won’t forget it. By no means do I celebrate, but I will do a short happy dance as time marches onward. Days become weeks, weeks become months, and months become years. I am still here. I will not celebrate cancer. I will absolutely celebrate me.

Every day I can.

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