Scanxiety – It is Real

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.

#MetastaticBreastCancerAwarenessDay

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.

Can we just skip October 8th from now on?

October 8, 2003 I had surgery to remove what my doctor told me at the time was very likely a fibroadenoma.

So you don’t have to look that up, it is a benign, or noncancerous, tumor that is most common in women between the ages of 15 and 35. It is a tumor that is well defined and easily moveable to the touch that can enlarge and shrink on its own.

My surgeon gave me the option to remove it or monitor it for six months and see what happens. After discussions with my husband, we decided to have it removed. The doctor was not concerned. Based on his exam and reviewing the mammogram and follow up ultrasound that detected the tumor, it presented itself like hundreds of other fibroadenomas that he had treated over the years.

So on October 8, 2003, when he spoke to my husband after the day surgery procedure to remove the lump, the doctor told my husband and my mother that it looked exactly like he expected it to, but they sent it off to pathology because that was protocol.

We left the hospital and went home believing this had just been a little scary “bump” in the road and now, after a brief recovery, we would resume our ordinary lives.

But on Friday, October 10, 2003, the phone rang. It was around lunchtime and I answered the phone. It was the doctor, and he almost apologized when he said: “you have cancer.” 

Fast forward to October 2010. I had been having a lot of pain in my hips and lower back throughout the summer. I had been to chiropractors and had been trying to do more core exercises to combat the effects of being 44. I had lots of excuses about why I was in pain, never once did I believe it was cancer-related.

But finally, I found myself in my primary care doctor’s office in October. The pain was more than just overexercising. My PCP sent me for Xrays and, with what I now consider one of the best poker faces ever, told me it could be one of three things. I remember her telling me 3 things but honestly now I can only remember two – 1) I could have a small fracture or 2) it could be cancer.

She said it so nonchalantly. She told me to get some crutches and not put any weight on my left leg and they would be in touch soon. I believe as soon as the door closed behind me, she was on the phone with my oncologist.

Do I remember the next few weeks in exactly the way it went down? No, I do not. 

I believe the call came while I was at work. My husband had driven me to work since I was following doctor’s orders and using crutches to get around. I was working part-time for a CPA doing school district audits and I was just working down the street from the family farm. 

When I answered the phone it was my oncologists’ office and there were those words again. You have cancer. According to my oncologist, my breast cancer had metastasized to my bones. 

I hung up and sat there for a minute. Not believing I was hearing those words again. After catching my breath, I called my husband and he came to get me. I remember him getting out of the car, walking up to me, wrapping his arms around me and telling me “I love you”.  My head was spinning, my heart was racing and I couldn’t imagine how I was going to tell my girls (15 and 12 at that time) that mom had cancer again.

The girls were young the first time around, and I went through chemo and radiation like a champ. No real side effects other than losing my hair and maybe a little fatigue, but nothing that kept me from continuing to work full-time at a very demanding job.

This time was different. I couldn’t walk. I was in a considerable amount of pain and they were old enough this time to understand what cancer really means and they were scared. My husband handled it like a champ. He was always better at those kinds of talks than me. He was there with me and with them every step of the way (literally – as soon we were to find out I had no hip joint remaining at all).

So on October 8, 2010, I found myself once again going into another procedure, this time a bone biopsy on my left hip. Although they knew I had cancer, they needed to confirm that it was in fact, breast cancer that had metastasized and if it was the same type of breast cancer. It was.

As of October 8, 2010 I was now one of the 30% whose breast cancer metastasizes. Life would never be the same again. It was time to learn how to live with metastatic breast cancer.

Living with metastatic cancer is hard. I try my best to not let it be the first thing I think about in the morning or the last thing I think about at night. But during Breast Cancer Awareness month, and the “cancerversary” of my diagnosis, I can’t help but think about it every October 8th.

Who is on your team?

Last night a couple of friends and I went to one of those Escape Game locations. It was supposed to be a fun night. And it was. Our team was not successful in escaping the room that we were in but we had lots of laughs as we played the game.

Since our team did not successfully solve all of the clues to escape the room, we each received a sticker that said: “I (almost) Escaped”.

The Escape Game, Austin, Tx

In the game, there were 7 players. Me, the couple that I went out with, and 4 others that we did not know before we went into the game. There were 3 middle school-aged girls (best guess) and the mother of one of the girls on our team.

The girls were giggly and (sorry girls) not much help in figuring out the clues. There were definitely enthusiastic, but putting the pieces together was not their strong suit, nor could they stay focused long enough to lead us to the next clues needed to progress in the game.

I admit I had really been looking forward to going to an Escape Room game. I love puzzles and am usually pretty good at them. I really wanted to say that we escaped, not that we “almost” escaped.

This morning as I reflected on the game I realized the evening represented how I feel about life these days.

The three girls represented things in my life that I feel like are holding me back from moving forward: the loss of my best friend and the expectation of the life we should be living; the loss of the use of my body doing what I think it should be capable of if cancer hadn’t taken its toll; and other outside factors (aging parents, work, etc) that I allow to take control of my life.

Last night as the clock ticked down and the girls got more excited and loud I found myself stepping back out of the way and just watching as they tried to figure out the final clues. As I thought about why I did this I realized it is a very common reaction for me. I think I do this for two reasons: 1) to protect my body – so people don’t knock me over or knock my cane out of my hand, and 2) as an Enneagram 9, I crave peace in my life so when things get a little loud or chaotic, I retreat.

Leaning against the wall, trying to stay out of the way, was not the way to solve the clues of the game. In the end, our guide had to come in and rescue us and then he explained the clues we had not figured out or had not gotten to that would have allowed us to escape the room.

Having to be rescued was not how I wanted the game to end. I realized that I wanted team players that would have been more helpful in discerning the clues.

Lately, I have been trying to find team members who can help me figure out the clues to escape the room I have been trapped in for the last several years.

I feel like I have found some very helpful team members that can help me unlock the clues. But I also have to learn to recognize when those other voices and distractions start invading so I don’t find a wall to lean against. I realize standing with my back against a wall while life continues to give me the clues I need to unlock the mystery is no way to move forward or escape the room I feel trapped in.

Celebrating a herniated disc

“You are stable.” I have lived from scan to scan every 4-6 months hanging on those words for the past seven years. I even started to believe that things would stay that way. Although #scanxiety would creep in, it never really took hold for very long. I would tell friends “no news is good news” and when the phone didn’t ring I believed I had skated by for another 4-6 months.

But this past June I sat in the doctor’s office expecting to hear him say “You are stable.” Instead, I got the long face, you know the look the doctor gives you when he doesn’t have good news. Instead of hearing the words I wanted and expected to hear, he asked “how does your back feel?”

Funny thing was, my back felt fine. I didn’t have any pain. I was riding a high from the previous weekend when I had walked down a runway at Austin Art Bra, a fundraising event for the Breast Cancer Resource Center (BCRC) where all of the models are current or previous clients of the BCRC. I was one of two stage 4 clients that walked the runway.

The doctor shook his head and while looking down at the report, informed me that there was a new spot on my T9 (on my spine). Still looking at the report, he told me he thought this was “just a bump in the road”. After all, I have been on the same medication for seven years and it has kept me stable all this time.

You would think that living with stage 4 cancer it wouldn’t shock you to hear that something has changed. But 7 years has made me a little complacent.

I’m grateful that my oncologist does not like to overreact. Because this was just one small spot, he wanted to do a biopsy and then recommended radiation. Afterward, I would remain on the same medication and we would see if things changed on the next scan.

This all seemed like a great idea. After the biopsy, I had 10 rounds of radiation and finished in time to go on vacation to the beach. Biopsy – check. Radiation – check. Continue living and not worrying about cancer – check.

Then the end of summer came. This summer had been full of lots of things culminating with my oldest daughter being offered a job in South Carolina and moving within 2 weeks. Of course I agreed to drive out there with her. I wanted to see where my daughter is going to be living and a trip to South Carolina sounded fun.

But when I got home I could hardly walk due to pain in my back. Being the realistic optimist that I am, I figured I had finally hit my limit on everything I had done this summer. So I decided I needed to rest. Slowly, and I mean very slowly, my back started feeling a little better each day. But after a week and a half of still not moving very well, I decided it was time to mention this new pain to my oncologist.

Not surprisingly he wanted to do a scan. Actually an MRI. Which, if I’m honest, I expected him to do just that. Wednesday morning at 9 am I reported for my MRI. Another box checked. Afterward, I met a friend for a late breakfast and decided to put it out of my mind as much as possible until I heard from the doctor.

Thursday morning around 11 am, the phone finally rang. It was the nurse. Unfortunately, I was on the phone and couldn’t get the call before she left a message. As my heart was pounding, I pushed the play button on the message I was relieved to hear herniated disc with nerve compression – not related to metastatic disease. The complete message was 1:33 however all I heard was not metastatic progression!

My heart rate suddenly started to slow down to a normal rate as I heard the words “herniated disc. It’s not cancer.”