Good News

How often does a metastatic breast cancer patient get good news?

I imagine it varies. Writing from my experience, I don’t get good news that often. Bloodwork has been steady and decent. Stability is considered good news. Stability or slow growth is usually how news is presented as “good” in my situation. I want more. I am thankful my news has been mostly good over time. Initial lines of treatments were highly successful. Mild, minute progression was the usual result when these stopped working. Millimeters. Sometimes these millimeters weren’t even considered medical progression. They sure mattered to me. Millimeters add up over time.

Millimeters crush my hope.

I’m still able to do many things. I am active. I’m independent. I also know others have received news much worse than mine. Grief weighs heavily on me when I learn that someone I know in person or online isn’t doing well or has died. That last piece is a huge reason why I don’t share news, good or bad, on social media platforms. Someone always is struggling and the timing never feels right. I don’t share much health news online.

What happens when I do get good news?

I don’t trust it.

I must not understand it.

I don’t allow myself to feel joy because I have to keep myself in check.

It will be taken away if I get excited.

It won’t last.

MBC has done a number on me.

I hope for good news. I pray for it. I try to do whatever I can to tip the scales in my favor. I also have fears and have been conditioned from too many similar reports of minor growth to not expect that is what I’ll hear. Patients with metastatic breast cancer don’t get a lot of good news. I imagine our oncologists don’t get to give it to us very often either.

Well, I got good news. Whatever is ahead of me, this good news can’t be taken away. I understand it. It wasn’t a mistake or some fluke. I held off in getting too excited until I had a face to face with my oncologist to see if our definitions of what good news meant were the same. We are on the same page.

I am feeling joy. I get to feel joy.

My October 2019 scans showed regression.

My largest spot is now a little smaller than it was in 2012 when I was diagnosed.

I have waited YEARS for this kind of news.

Millimeters also make a difference over time when they are being subtracted.

If size is the only thing that matters, then I have regained ground to where I was over seven and a half years ago. Size isn’t the only thing that matters, but that is how I’m framing my thoughts. There are other factors, especially the physical and emotional tolls of treatments, retiring early from teaching, the never-ending obstacles of living with MBC, etc. All news is not golden in my life. Bad news has been hard. These all have had major impacts.

Research also has major impacts.

Research works.

Trials work.

My privacy has always been something I want to protect, and I will continue to be a private person. Privacy is the other reason I do not share much publicly. When others share good news, I always find myself wanting a little more information so I can assess if I may be eligible for their protocol and have a chance for the same kind of good news. This is one time where I will share more details. It may help someone.

I have been participating in a phase 2 trial since February that I was matched with through Foundation One. Foundation One is a lab that does in-depth genomic testing that (as I was told) goes deeper than what genetic testing through my treatment center clinic involved. It looks for mutations. Most of the time mutations are not found. If there is a mutation, there hopefully is also a trial that would target that mutation, as there was for me.

The cancer in my body is identified as estrogen positive, HER2 Neu negative. An activating mutation of ERBB2 (Her2 Neu) gene was identified. This means I do not have too many of the Her2 Neu genes. Having too many would be an amplification and make me positive. I am negative. The issue is the gene is OVERACTIVE and doing the wrong thing. The overactive aspect can be targeted.

I also have a mutation presenting as a variant of ESR1 in my hormone receptors. It is a variant of an estrogen receptor that is not active and therefore means the receptor is ON all of the time. People do not respond well to aromatase inhibitors where this is true. A mutation here explains why previous lines of treatment stopped working or haven’t worked as well. This mutation can be targeted as well.

Herceptin, neratinib, and faslodex are targeting both these suckers.

I’ve traded one batch of side effects for another set. Some have stayed the same. I’ll push on and keep doing everything I can. I pray I can stay on this regiment for the long haul and that it keeps doing good work.

Cancer acts differently in everyone. It can still behave differently in those of us with the same type. I hope those of you in similar situations get good news, too. We all need good news.

There is more work and research to be done, for myself and for others.

Research gives me hope.

I live in hope.

Unringing A Bell

You can’t unring a bell.

Receiving a cancer diagnosis is very much the same. You can’t go back to the way things were even after surgeries, radiation, and treatment are finished, even if you are assured the cancer is gone. The fact remains that you had it. Everything you went through has inherently changed you in some way.

Others may not see it. Physical appearance doesn’t change drastically for many. Family and friends may tell you that you look the same to them. You are still the same you. It’s intended to be reassuring. There is some truth there. (I find it annoying.) To say you look the same on the outside and imply that you are the same on the inside is what some people mean. That is not fair, nor their call. I know of one marriage that ended because a friend’s husband didn’t understand his wife was still dealing with a lot of difficult emotions. She told him, but she looked “just fine” and everything was “done” and needed to get back to “normal” so he couldn’t understand why everything else wasn’t therefore fine by default. Certainly, there could have been other factors to this marriage ending. I know of another marriage that ended because the husband understood there were changes on the inside as well as on the outside, and he wasn’t attracted to the outside any more. What a guy! There could have been other reasons behind this marriage ending, too, but it seems like cancer became the impetus.

Then again others may see it all too well. Somehow a person who has suffered and is somehow different in a good way may be too much for others to accept. They would be very happy to go back to how things used to be in order to feed what they need. This is where disapproval, insults, and being told that YOU have done something wrong come into play as attempts to keep you in a place that works for them. These relationships should end. There is no room for toxic people in a life that has seen its share of toxicity. I personally deal with toxic drugs almost every week in my efforts to stay well. I can’t deal with toxic people or negativity. Whether finished with treatment, currently in treatment, or in ongoing treatment, do not choose to tolerate toxic negativity from any person. Enough. January is a good time to start fresh.

Maybe you feel not much has changed on the outside or the inside. My position is inside changes took place because you grew from what you experienced. Change accompanies growth. Those who don’t like change don’t have as much opportunity for growth. I used to be one of these people and it’s still hard for me. Change is uncertain and often I don’t understand why some things need to change. I’m trying to understand that changes are there to teach me something and I am working to be open to changes. Changes can be new beginnings. January is a good time for these, too. New beginnings after diagnosis and treatment may be a new job, home, or relationship. Maybe you look at life differently, and have reexamined your belief systems or time commitments.

One constant remains: You can never not have had cancer once you’ve had it. That bell was rung.

I’m tired of its clanging and repetition.

I believe you can ring other bells louder so the sounds drown out other bells.

Ring the bell of resiliency.

We are all capable of more than we know. Resilience is another one of those intangible factors that makes people rise up time and time again after tough times. Yes, problems are inevitable. How a person deals with them is what matters. Being resilient means you find a way to continue to thrive even when there are problems. Taking care of yourself is part of being resilient. Physical and emotional self-care are non-negotiable. Exercise, eat well, meditate, find joy. When your outer and inner self are strong, it means another layer of resolve has been added to resiliency that problems cannot break through, whether the problems present themselves as people, situations, or things.

Ring the bell of joy.

Do more of what you love. Have that cookie. Take a day off and do something fun, frivolous, and completely fantastic. No need to justify, or explain, or defend it. For me, I choose to walk trails and be among trees. I sit on my sun porch and listen to birds. I laugh at movies I’ve seen too many times. I call friends or get together with them. I enjoy exercising (usually) and enjoy it even more when I’m done and reaping the benefits.

Have another cookie.

Yes, I know I mentioned that one twice.

Ring the bell of gratitude.

I believe there is a richness and depth in appreciation that gives life both more purpose and meaning. That thing where you think of five things to be grateful for at the end of each day works. Feeling gratitude is easier when you feel healthy. What about when you aren’t feeling well at all? Knowing myself as I do, I know my emotional and physical health does impact what I’m capable of feeling in the gratitude realm. The other night I had one of these moments. It was about twenty-four hours post treatment and I was flushed and hot from the neck up while the rest of me had the chills. I was low energy and felt a little sick. But I knew if I could get to bed and fall asleep that it would pass and tomorrow would be better. That was about all the gratitude I could muster. My point is it was enough. We are human and do the best we can on any given day. That is the space we all share where health status doesn’t matter.

Ring the bell of knowing yourself.

Take whatever time you need. It isn’t selfish to take time for yourself and know what you think. It isn’t selfish to do what is best for you. Live your beliefs. Others don’t have to like them or agree with them. You do. I thought I knew myself pretty darn well before the cancer diagnosis, but it sure caused me to be more deliberate with how I live. I am more sure of myself now than ever, even though I continue to be a magnificent work in progress.

Ring the bell of standing strong.

You may have to keep ringing a lot of bells longer than you had planned until the unwanted bells stop ringing. Keep at it. You’re stronger than naysayers. Statistics do not know you. You’re more than a number. I get tired of bell ringing, but remember that the sounds create important tones and vibrations. These bells make beautiful music.

Nope, you can’t unring a bell. You can’t let anyone else ring it for you either. Ring all the bells you need to ring until you hear a song fit for a carillon tower. Your song.

 

For reflection:

What bells would you like to stop ringing in the new year?

What bells would you like to hear ring more?

Tennis and Life: A Resilient Match

I remember the crisp pop the racket made as it connected with the tennis ball in just the right way in the center of the racket.

It was a solid sound.

I remember the feeling of oneness that came from getting your racket back, making contact with the ball, and following through with a forehand as I watched the ball sail through the air and land cross court.

It was a fluid feeling.

It was also twenty-five years ago. Or more. I never played much beyond competitive play in high school. Recreational play after that had its ups and downs, mostly downs. I played too infrequently to maintain any real skills. Friends I had played with moved away. Finding people with whom I was moderately well matched was challenging. There never seemed to be time. Life got busier with work and other interests. I barely knew who the top ranked players were and seldom caught a match on TV. Years went by as they do.

Last winter, I decided I wanted to play again and made an action plan. I researched my tennis options. I would take a lesson. It would be private so I wouldn’t have to be concerned about my level of play with another player. I largely wanted to see what it felt like to be on a court again after so many years and get baseline data for my abilities. I wanted to work on the mechanics of net play, my serve, and my forehand and backhand with minimal running. I figured my brain and body still had the neurological maps for how to do those things, but I needed to focus on them in isolation.

Isolating strokes revealed I still had a lot of really good moves. There was a lot of joy in hitting things.

A LOT.

My mental focus is much stronger in my late forties than in my teens. On that particular day, it was like a part of me was watching me play in slow motion and I noticed what I was doing so I was able to adjust where I needed while I did it. I felt in control, which was something that had been more of a foreign feeling in my life lately.

Before I started, I was concerned I wouldn’t last the seventy-five minutes scheduled for a lesson, but my stamina held up well. I was also playing with my chemo body. I felt really good on the court. The feeling was there as soon as I stepped into the court enclosure. Honestly, I hadn’t expected to have a sense of belonging wash over me as it did. Then I realized the feeling was the mix of joy and excitement.

The joy felt electric, which is a very odd way to describe how I felt, but so much was firing together in my body and mind. It wasn’t just the popping sound of a solid hit or my strokes that felt fluid.

I felt solid and fluid.

I was capable and a little more whole than I was when I woke up that morning. My instructor was impressed with what I was able to do taking into consideration my current health needs and how long I had been away from the game. So was I.

You know how people always try to make things look better than perhaps how they really are? Facebook is a platform for this. So are Christmas letters. We can take multiple photos of ourselves and delete the unflattering ones instantly. This narrative I’ve spun about my triumphant return to tennis feeds into this need to always portray everything in our lives as wonderful. It’s natural to try to look and sound your best and put your best foot forward. But none of those are completely accurate versions of reality. Keep reading.

I am no star athlete and I don’t believe I ever will be. I just want to do something again that I used to love and be more active.

And hit things.

But here is my reality that I’ll leave out of the holiday letter . . .

I got hit with a rogue tennis ball in the head.

Of course I did.

I managed to keep all the balls I hit in my court and not hit any over the high net that divided court enclosures. My control was surprisingly impressive. One ball however came flying over from next door.

My instructor hollered, “Look out!”

I just froze. I knew a ball from somewhere was coming but didn’t see it. Hopefully, it would miss me. One more step and it would have.

Bonk.

After decades of not playing, I was in just the right place at the right time. What were the chances? What was the lesson? Life is filled with imperfections and this was simply a good example of one. In anticipation of my lesson, I had worried I wouldn’t move fast enough and get hit in the face with an oncoming ball. Here I was being taught I had nothing to fear.

Nothing.

Everything was still fine.

And sure, there’s always the lesson to laugh at whatever life throws your way, even if it’s a tennis ball.

Or is this the part I edit out when I share with others?

I guess it’s a little too late for that idea.

Which sounds better?

A)  I got hit in the head with a rogue ball from another court because those are the types of things that happen to me.

B)  It felt great to be on the court again. I discovered I still had a lot of good moves and hit many balls confidently.

I personally favor B, but know both together give a more complete picture of what happened.

Few things are ever completely wonderful or awful. Keeping the part in about being hit in the head shows resiliency in action. The ball bounced off my head and it was no big deal. I bounced back from that perfect fluke before that ball even landed on the court.

The lesson that offers the biggest take away for me is the lesson of resiliency. It shows up again and again, just as its name implies it should. Resiliency shows up going on longer walks, hiking a hill that seemed out of reach, and taking a tennis lesson.

Every activity offers opportunities for learning more about my capabilities. They provide me with templates to learn how to adapt where I need to and stay flexible in the moment.

Resilience always leads to growth.

Much like the tennis ball, being resilient allows us to keep bouncing. Whether the ball bounces in court, into the net, just out of bounds, or off your head, it bounces in the realm of possibility for making future challenges probable and more successful.

Resiliency is a good match for all of us, whether we play tennis or not.

How has life shown you that you are resilient?