Have you ever had a word or phrase come to you over and over again? From completely different angles?
Recently it seems everywhere I turn, every book I read, and even in random conversations the word Resilient keeps popping up.
Even though I know what resilience means, I looked it up in the dictionary for a more definitive explanation.
According to Webster, resilience means:
capable of withstanding shock without permanent deformation or rupture
tending to recover from or adjust easily to misfortune or change.
Am I resilient according to this definition? Or do I just come across as resilient to people looking at me from the outside?
Recover from change? No. Recovery implies that you return to how you were before. I’m not sure that is a good definition for a person.
Adjust easily? Easily? Not really, but I do adjust. Maybe it looks easier than I think it feels.
I don’t believe that when you have been through a cancer diagnosis or the loss of a spouse that you really recover. I will never be the person I was before each of those events happened. Adjust – Yes, Recover – No.
Instead, I feel like I have been reshaped. And most days I’m still trying to figure out what that new shape is. But maybe the best way to describe it is that I get up, look in the mirror and ask what shape are we today. Some days, I’m not going to lie, the shape is a blob. Others it can be a square with sharp edges and others a circle where I can let things roll off of me. So I guess that makes me a shape-shifter. I can make myself into the shape necessary to meet the needs of the day most of the time.
After some self-reflection, I guess resilient is the best way to understand how I have gotten from point A (original cancer diagnosis) to point T(oday) – [I have had many points in between and hate to think that I am at point Z because I’m not finished bouncing back or reshaping].
So what makes someone resilient? For me, I think it has been:
Having a community around me that is loving and supportive. For example, friends that will come to the hospital at 10 pm if I call and ask, or will come sit with me in a waiting room waiting to hear the latest test results.
Being vulnerable with those around me. Allowing people to see what is going on and not hiding from the bad stuff.
Having a grateful attitude towards life, no matter what life has thrown at me. For example, I am grateful for the 23 plus years with my husband of love and laughter.
Having HOPE – I have written about hope before (here’s an oldie). Hope gives me the ability to look forward and not back. Hope has allowed me to live for the future instead of looking to the past.
Perhaps this is why I am so drawn towards butterflies. The butterfly symbolizes endurance, change and hope.
I’ve often wondered why people are interested in my story. I’ve struggled to understand what I have learned or what wisdom I have to offer others. Maybe it is the resilience factor.
Well, as the saying goes…all good things must come to an end. I have been taking Capecitabine for over 7 years. It has helped keep my #stage4breastcancer stable…
Until this summer when I had what my doctor and I referred to as a bump in the road. For the first time in 7 years, I had a spot show up on my scans in May. I received radiation and then we waited.
In late October I had scans again. I usually get a little anxious around scans, because, well, Stage 4 Breast Cancer. But this time the anxiety was just a little higher. I was waiting to see if the spot in May really was just a bump in the road, or whether it was a roadblock and the Capecitabine was not doing its job anymore.
The results are back. No pun intended…ok slight pun intended. There were a few more spots showing on my spine. The good news, I have a high pain tolerance and I am not feeling any worse physically as a result of the new spots.
The bad news is now it is finally time for me to say goodbye to Capecitabine and find a new treatment to keep this stupid cancer in its place.
On the more good news side of things, because I have been on one therapy for so long, there are lots of new drugs available to try. I am reminded of when I was originally diagnosed in 2010. Capecitabine was my 3rd line of treatment before we were finally able to see stable scans.
So if at first you don’t succeed, try try again. My mindset right now is that if I could get 7 years from one treatment – which in the #metastaticbc world is amazing – why can’t I get 7 or more years from the next line of treatment. It may be some trial and error like it was in the beginning but I am willing to take those chances.
After all, I have a trip to Greece planned for next year and I don’t plan on missing it!
If you would have asked me a year ago if I had ever thought about going fly fishing, my answer would have been “No”.
I don’t particularly like fish, and the last time I went fishing was probably with my grandfather when I wasn’t even a teenager. I was his only granddaughter, and therefore I did not have to put the worm on the hook or take the fish off the hook if we were fortunate enough to catch anything. My grandfather did all of that for me. All I had to do was hold the rod, sit in the boat and enjoy the day on the lake.
So when some friends suggested I go on a retreat for women with metastatic breast cancer with Casting For Recovery needless to say I was a little skeptical.
I submitted my application and promptly forgot about it until I got the notification that I had been selected to participate. I have been trying to stretch outside of my comfort zone and explore new things this year. As the weekend started to get closer I found myself getting excited about trying another new thing. For me, it has been about adventure and this was going to be another adventure for me. If I liked it great, and if I didn’t then it was just one weekend.
We arrived on Friday afternoon, and the volunteers were all incredibly friendly. They were excited to meet all of the participants and genuinely happy to be spending the weekend with this group of metastatic breast cancer women and share their love of fly fishing.
We came from different parts of Texas, but we all had one thing in common: Metastatic Breast Cancer. Some of us were older, some younger, some with husbands/boyfriends, some without. But we instantly bonded with one another.
I thought I was just there to get some fly-fishing lessons and then go out to the river and practice what we had learned. I quickly found out there was so much more to the weekend than I ever imagined. There were several indications of how this would be more than just a fly fishing weekend:
#1: the first person I met upon check-in smiled and told me her first name. That didn’t seem odd until I realized she was an oncologist and was here to give additional support to us throughout the weekend. Maybe you aren’t like me, but I don’t usually call doctors by their first names. It was so refreshing to meet her and get to know her as an individual who has a passion for fly fishing and a passion for caring for her patients.
#2: Although I did know another participant prior to the retreat, everyone I met was so grateful for the opportunity to come together with others who understood what they were going through. In Austin, we are extremely fortunate to have access to many resources that I have taken for granted. We have a wonderful organization for women diagnosed with Breast Cancer called the Breast Cancer Resource Center. Several of the women mentioned that this was the first time they were able to connect with other women with #MBC.
#3: Friday was about getting our equipment and getting to know one another. We had an evening activity learning to tie a fly. I can’t say that my fly came out exactly as planned, but it wasn’t about that. The volunteers assisted but didn’t take over and let us each create our unique fly. Then they gave us a box full of flies that were made just for those of us on the retreat. People whom I have never met, thought it was important to share their gift of time and love of tying flies to make flies for women who may never even take them out of the box.
#4: the agenda had two opportunities to learn and practice the art of casting. I’m here to tell you that what you see in the movies (i.e. Brad Pitt in A River Runs Through It) makes it seem a lot easier than it actually is. It really is an art form and I had no idea that so much thought went into fly fishing. We practiced, we were coached on how to hold the rod, how to let the line out and even what to do if we did catch a fish. But more than that, we learned that having a rod in our hands was a good way to forget about why this particular group had come together and enjoy the beauty of nature around us.
#5: Saturday afternoon we had the opportunity to sit down and ask the oncologist (the one that I knew by first name now) any questions. I’m usually quiet during these discussions because as I have written before I sometimes feel like a fraud around others with #MBC. During this discussion, I realized I have the opportunity to offer hope to others – although not everyone stated how long they have been living with #MBC, I think I was the one with the most longevity (9 years) and was able to offer hope to those who have not been living with it for as long as I have.
#6: God has a way of putting people in your path to help you grow or to help you discover how far you have come. Sunday morning we went to the river. There we were assigned a river helper. Each one of us had an experienced fisherman/woman to assist us with our fishing experience. They were there to tie the flies on the hook, assist us with our casting (if for some reason we hooked a tree instead of a fish), if we were fortunate enough to catch a fish they would help with bringing it in and taking it off the hook and throwing it back in the river (we were doing catch and release only). I was paired with a very nice gentleman who had been a river guide for these retreats for several years. We began to talk and I soon learned that his wife had been on one of these retreats. We discovered we had more in common when he told me he was a widower. I am grateful that he wanted to continue to be involved with Casting for Recovery after losing his wife. We talked about how unfair it was that our spouses were taken from us by such an awful disease. I confided that although I wish my husband was still here, I am thankful for the time we had together and while I believe he still watches out for me, he would like me to be happy and make memories while I am still able. I shared my motto “I will choose to do what I can, when I can, while I can.” And that was why I had applied to participate in this retreat.
I left the retreat Sunday afternoon and reflected more on the conversations I had with the participants and the volunteers than thinking about the fact that I did not catch a fish – which I now realize was the real reason I am grateful for the opportunity for this retreat and others like it.
The question remains if I will go fly fishing again. I think I will. I appreciated the mindfulness of being in nature and the art of the casting. I’ve even found a shop near me where I can learn more about fly tying.
I have scans coming up on Monday. These will be the first scans since my little “bump in the road” in June that caused me to have 10 shots of radiation to my spine in July.
I have mentioned before that scanxiety is real. I’ve lived on this roller coaster for 9 years. Until June, I had a nice long 7 year run with my friend “stable.”
During that those 7 years, I had scans every 4-5 months or about 3x a year. I had scanxiety, but it didn’t last long. Usually, I would get anxious about a day before and stay that way for a few days after – until I realized that the doctor wasn’t going to call, or I was able to get online and read the scan reports for myself and see the word “stable” at the bottom.
I had gotten really good at leaving the scanxiety behind and not letting it take over more than a few days and most of my friends didn’t even know when I was having scans. After all I didn’t want to be “that person” – you know the one that can only talk about their cancer.
This time is different. I started recognizing the signs of my scanxiety earlier than usual. Because after 7 years of stable, I did have that “bump in the road”. What if that bump becomes a pothole? What if they find another spot? What if it wasn’t just an anomaly?
My oncologist assures me that there are a lot of treatments out there that are available to me if we need to change my course of treatment. After all 7 years on one medication in the metastatic world is an anomaly all of its own.
So for the next few days, I’m going to try to not think about Monday morning and what the scans might show. My favorite youngest daughter will be home for the weekend and I plan to enjoy spending time with her.
I have been catching up on Gray’s Anatomy lately – which honestly as a cancer patient I really see all the flaws, but I watch it anyway. There was an episode where Catherine was talking to Bailey about living with cancer and always living in fear. At the end of the episode Catherine, Richard, Bailey, and Ben are riding in a limousine drinking champagne (or bubbly water for Richard) and eating greasy burgers. She tells them that is the way she wants to celebrate every scan – good or bad – from here on out. I LOVE THIS!
So who wants to go for a limo ride on Monday? The results will be what they will be, good or bad, nothing I can do about them now – I will just try my best to live beyond the scanxiety.
Today, October 13th, is Metastatic Breast Cancer Awareness Day. Those of us living with Metastatic Breast Cancer get one day during Breast Cancer Awareness Month to tell you our story.
Here is mine in a nutshell.
Most days I feel like a fraud.
I have been living with Metastatic Breast Cancer for 9 years. I am one of the lucky ones.
I have been on the same medication for the past 7 years, and (for the most part) it has kept me stable. But that is not the norm. And that makes me feel like a fraud.
Did you know the average life span of somone diagnosed with Metastatic Breast Cancer is about 36 months. I have lived 3 times longer than that, and I hope to continue to beat those odds.
Here is what Metastatic Cancer looks like for me:
I get up every day and try to put my best foot forward (which, of course for me is my right foot – if you know me, you know why that’s funny). And the cake, it is true. I have learned to celebrate when the news comes and it doesn’t mean progression, it’s just a herniated disc.
I have been told numerous times that I am “an inspiration”, or you need to tell your story to more people. But honestly, most of us don’t want to hear that we are an inspriration. We just want to live. And live life well. (If you want to read my story, it is all here on this blog and you can start here.)
If I’m being honest, I don’t feel like an inspiration at all. And I sometimes get tired of my story. Isn’t there something else people want to talk about? I love having coffee or lunch or dinner with friends. I love to go to the movies or to see a concert. I love to sit at home and watch Netflix. I love to spend time at the beach or in the mountains, or just hanging out with my daughters. These are the things I treasure and what I want to continue to do for as long as I am here.
But this is also what Metastatic Breast Cancer looks like and feels like to me. This was the first time I walked with a cane after having surgery to remove an infected, rebuilt hip – all courtesy of metastatic breast cancer.
Nine years later I’m still standing. I sometimes feel like a fraud, but this, too is what metastatic breast cancer looks like.