Page 2 of 13

God’s gentle reminder to take out the trash

If you are new here, welcome. Several years ago I was talking with God. I wanted a sign, kind of like a hand signal, to remind me that He is around me and in control. Like a lot of conversations, I tried to lead it in the direction I wanted it to go. I was determined my sign would be a ladybug. I think I had just read a book where a ladybug was present at many crucial times. But as I was telling God I wanted the ladybug to be my sign, He gently whispered in my ear “Butterfly.” I really didn’t want a butterfly because it sounded so cliche. But there it was. And now, God’s sign to remind me that he is here with me and in control is the butterfly. What does that have to do with a rainy Friday in January, you ask?

Lately, I have been feeling a little out of sorts. Recently, the medication I take for metastatic breast cancer had to be changed because of some slight progression. I am still getting used to the new side effects from the medication which has not exactly been a joy ride. In addition, it is the height of Cedar season in Austin, and with an immune system that isn’t quite as strong as years past, I am struggling with allergies.

Today, God reminded me He is still with me and in control…

Friday is trash day. Last night, in the rain, I was taking the trash can out to the curb. When I pulled the can away from the wall, I noticed something on the wall. I didn’t think much about it. Mostly because it was 10 PM, it was chilly and raining and I just wanted to get the trash out to the street. I had procrastinated earlier in the evening, and then it started raining, so I procrastinated some more. Since it was raining, I knew I just needed to get the trash out and I would have time in the morning to get the recycle out.

In my neighborhood, the trash pickup comes earlier than the recycle. This morning, even though it is still chilly, I caught a break in the rain to get the recycle bin out to the street. I noticed, again, that there was something on the wall behind the trash and recycle bins. With a little more light this morning, I could see that it was a butterfly.

Butterfly
A gentle reminder from God

I don’t know about where you live, but in Austin, Texas you don’t really see a lot of butterflies in January.

There it was, attached to the wall. A butterfly. A gentle reminder from God. Nudging me to move the trash out of the way.

I have all sorts of trash that I allow to pile up. Whether it is my diagnosis and the recent progression, the loneliness of being a widow, the cedar fever, disagreements with friends over small things, or just plain old procrastination – be it taking out the trash or working on my book. All of these things pile up and I find myself separated from God.

But God always finds a way to reveal himself. Today it was ever so gently by placing a butterfly on a garage wall behind a trash can.

What kind of trash do you need to move so you can see God at work in your life?

Where will you be in 10 Years? Reflections on a Decade

10 years…one Decade…Gone in a Flash

I could never have guessed 10 years ago, on the eve of a New Decade what the next 10 years would bring.

What have I learned in 10 years? Just like the Bertie Bott’s Beans in the Harry Potter books, you never know what you are going to get. I have learned to enjoy the highs and use the memories created sitting at the top of the mountain to get through the lows of the valleys. I’ve also learned that friends are there to help carry you when you think you can’t go on anymore and will help you look to the next mountain top and remind you of the view that is just over the hill.

Where will I be in 2029? I have no idea, but I plan to try to capture as many highs as I can before I get there and focus on those when (not if) I find myself in a lowly valley…

Here’s the highlight reel of the last decade…

At the end of 2009, I was married to my best friend. We had 2 beautiful daughters – one in High School and the other in Middle School. Cancer was in my rearview mirror and my husband’s business was beginning to find footing.

2011 Rose Bowl Champs – TCU

2010 – Hello Cancer, my old friend (not really, but it is definitely a constant companion). If I’m honest, I should have been diagnosed much earlier in the year, but October 8th was the date of the Stage 4 diagnosis. Definitely not one of the highs of the year (or the decade). The year brought lots of pain (from the cancer metastasizing in my bones) but we ended it on a high note (thanks dad and Judith for the trip to the Rose Bowl and thanks TCU for the win! #gofrogs).

2011 – Cancer was still the highlight of the year. Since the metastasis practically destroyed my left hip, there were many trips to San Antonio to meet with an orthopedic oncologist. And in August 2011, I spent 2 weeks in San Antonio rehabbing from a surgery that made me feel like the bionic woman – lots of metal in my hip, but it didn’t give me any superhuman powers like leaping over buildings or running as fast as a train, but I was able to walk again by the end of the year.

2012 – Seemed like life was settling back into a routine. Nothing exciting happened. But after the past 2 years, we were fine with no excitement.

2013 – Our oldest daughter graduated from High School and got accepted at my alma mater to study Athletic Training. Super proud frog mom moment.

2014 – Still riding a roller coaster, but the drops are getting smaller and the hills not so large. We learned to live with the cancer diagnosis and even began to think we had it somewhat on our terms. The medicine I was taking was keeping things in check and although I had a minor setback with my hip (unexplained pain after many, many tests). I was stable as far as cancer goes and was still here to watch my kids grow up.

2015 – Cancer once again took control of our lives. Only this time it was my husband and not me, I was still stable (not sure how with all of the stress, but thankful nonetheless). J.R. had not been feeling well for months and on September 22, he ended up in the hospital with a diagnosis of Stage 4 Renal Cancer. Friends and family rallied to support us during this time. My daughter and I even got to welcome in 2016 at the Alamo Bowl. One of the all-time greatest bowl comebacks in history. TCU defeated Oregon in one of the craziest games I’ve ever had the opportunity to see in person.

2016 – We had some highs, my youngest graduated from High School, but mostly the year took its toll on our family. My dad, who was also diagnosed with Stage 4 cancer in September of 2015, passed away on July 20th. My brother and his family had made the trek to Texas to see everyone and I’m so grateful that he was there that week. July 24th, exactly four days later, my husband passed away. The rest of the year is a blur. But, with the help of great friends, we managed to get my youngest daughter moved into her college dorm and she began her college career.

A fresh start in a New Home #BuiltaHouse

2017 – I #BuiltaHouse. – we always talked about building a house, and in March 2017 I moved into my new house. It was bittersweet and I told friends it was an anniversary present (I closed on March 1st and March 6th would have been our 24th wedding anniversary). My oldest graduated from TCU and got a graduate assistant job at Angelo State University (my husband’s alma mater!). The year did not end so well, as I spent 10 days in the hospital and had to have all of that beautifully rebuilt hip removed due to an infection. Once again friends and family rallied to get us through Christmas and the coming months.

2018 – Hey, I’m walking again. No one saw that coming. Who walks without a hip joint? This girl, that’s who. Other than learning to walk, 2018 was a pretty mellow year, but again, didn’t I deserve a pretty mellow year after the rest of the way the decade had gone?? I think so.

2019 – This was finally going to be the year. I was walking, my oldest finished graduate school and got her first “real” job, and my youngest graduated from college a semester early. Unfortunately, cancer had decided it was time to flex its muscle again and after 7 years of being stable, I had some new “spots” show up on my scans, one in June and a couple of more in October.

2020 – I will be welcoming the new decade in with some new medication to try to get back on the stable train. Fingers crossed that we can find a medication that will be as successful as the last one. I plan to finish writing a book I started in 2018 and find as many mountain top views to enjoy as I can.

What are your hopes and dreams for the roaring 20’s?

Traditions – This newest one is something I don’t really want to continue

At this time of year, our family has many traditions. I imagine you do too. We make Christmas cookies together (always a TCU stocking and a purple penguin because we don’t make black icing). On Christmas Eve we have tamales for dinner (it’s a Texas thing), we go to the Christmas Eve service and, either before or after depending on which service we go to, we watch It’s a Wonderful Life. Now that the kids are older we all gather the stocking stuffers we have accumulated and we try not to peek at what others are putting in our stockings.

This year marks the 4th Christmas without J.R., the love of my life and best friend. He passed away in July 2016. For Christmas that year, my girls and I traveled to New York to spend Christmas with my brother and his family. It was nice to not have to think about how to “do Christmas” without my husband and their dad. But it was also a little more difficult than just the first Christmas without him. Part of the trip also involved going to Washington DC to bury my father in Arlington National Cemetery. (He died 4 days before my husband). It was not the Christmas that any of us wanted and some of our traditions were put on hold as we didn’t know how to celebrate with J.R. and dad that year.

In 2017 I moved into a new house and was hoping to start some new traditions. I wasn’t really sure what they would be but we had survived all the firsts and I was hoping to make Christmas a celebration again. Instead, in November I started fighting an infection. I ended up spending 10 days in the hospital in December and came home with one leg 2 inches shorter than the other from the removal of the hardware that had been my hip since 2011, unable to walk without a walker (and even then not more than a few feet at a time) or do much of anything other than give myself the daily antibiotic infusion and watch everyone around me try to make Christmas not quite so depressing. Needless to say, we did not start any new traditions that year.

For Christmas 2018 we celebrated at home, no hospitals, no surgeries, no antibiotics, no funeral, just me and the girls and my mom. It was quiet but after the previous 2 years, it was a welcome change. I was walking with a cane and could participate in helping get things done. All in all not a bad Christmas, but still no new traditions that I had been hoping for. 

This was going to finally be the year – 2019. Both of my daughters are grown – one lives in South Carolina and the other in West Texas. As of this December, they both have now graduated from college. We could start some new traditions. Something that could be aimed toward more adult aged things. {At one point we talked about going to Ireland for the holidays, but with the move by the oldest halfway across the country, we weren’t able to coordinate our plans.} But once again my body decided not to want to play nice. In early December I started a new treatment (thanks to the progression in my spine they found on my last scans). The new meds may have had something to do with the excruciating pain that landed me in the emergency room last Monday morning. Thankfully I haven’t spent 10 days in the hospital, but I did spend 6 hours in the emergency room and another 4 hours in a doctor’s office trying to determine the source of the pain. They finally decided to give me antibiotics and with 3 days left before Christmas, I am beginning to feel like myself again. Not sure what this means for my new treatment plan (since I have stopped taking the drug that the doctor changed me to at the beginning of the month) but now I’m pretty sure we won’t be squeezing in any new traditions that we want to build on.

But one thing is certain… I’m hoping next year will be antibiotic and hospital free (this is not the kind of tradition I want to continue).  And maybe I should quit worrying about any new traditions and just learn to appreciate the wonder of the season for what it is…A Gift.

Dear Cancer…A letter about how I really feel

I’ve never been good at expressing my feelings. I generally like to find the good in things. Don’t get me wrong. Situations can get me frustrated. But I can usually get past it after a few days and see things in a better light.

I have been able to do that for years with cancer. I have written about how cancer has given me hope and how I don’t let it tell me what I can and can’t do. But the reality is, cancer has taken a toll on me mentally and physically over the years. And it really pisses me off sometimes. So here is my Dear Cancer letter…

Dear Cancer: It’s not you, it’s me. 

Wait, that is so NOT TRUE – it very much is you and I’m tired of being nice to you. If you could just leave now and never come back it would not be too soon. 

In 2003, without any warning, you came into our home and disrupted our life. You were an unwelcome guest that barged in and made yourself at home. When you finally announced yourself on October 8th after a surgery to remove what we believed was a just a non-cancerous fibroadenoma, I was in shock. By the end of the month, I had 2 more surgeries and met the doctor who would be my oncologist. Less than one month from your intrusion, I began chemotherapy. It was all very fast and very surreal.

In the summer of 2004, after 8 rounds of chemo and I can’t even remember how many rounds of radiation, we packed your bags and kicked you out of our house. You had already overstayed your welcome and it was time for you to move out. I hated you then, and I still hate you. You took away my kid’s childhood by just being in our lives and for that, I will never forgive you.

We thought we had dealt with you and kicked you out to the curb, but unknown to us at the time, you had left a small unpacked bag behind for us to discover at a later date. 

When you interrupted our life in 2003, it felt like just a bad dream. For 10 months, we let you run our life. You told us when we had to be somewhere, you took my energy and my hair. But what you didn’t take was my spirit, as much as you tried. We had friends and family help with meals and house cleaning and other odd jobs that popped up. My husband took up a lot of the slack and didn’t even really complain. 

We fought with you on our terms and thought we had put you in our rearview mirror. That is until October 8, 2010. After months of pain in my back and hip, you once again came storming back into our home – that small bag that you left behind had turned into a huge duffel bag (kind of like those sea monkeys that you “just add water” and they grow). 

As you came in and unpacked the huge duffel bag, we discovered that you were there to stay this time. An uninvited guest that was now living in the house and had no intention of ever moving out. You had changed your name from breast cancer to Metastatic Breast Cancer. It was like you wanted to make sure you were in control again. Discovering the pain in my back and my hip was actually due to breast cancer metastasizing in my bones, we now understood that you were here to stay and there was nothing we could do to kick you out.

Through the pain and the uncertainty that you brought I really hated you. Not only had you disrupted our life in 2003, but now you had taken my ability to walk. When we saw the scans and the xrays that showed how much of my left hip anatomy was now gone, it was no wonder that my pain level had soared to a 12 on a scale of 1 to 10. 

You moved in and still wanted to run our life. Frankly cancer, your gift-giving abilities SUCK!

Surgeries, chemo, radiation, more radiation, another surgery, more chemo and drugs, another surgery, recovery and learning how to walk with a rebuilt hip, And you just kept giving.

After the surgeries, you decided it wasn’t enough and you had to move to my ribs which meant more chemo and drugs to try to keep you in your place.
My oncologist, through some trial and error, finally found the drug that managed to keep you under control. The chemo finally turned the water off that was making the monkeys continue to grow and we finally learned how to keep you in your place.

For 7 glorious years, we were able to tame you – to the point where I sometimes wondered if you really had decided to move on. I still had doctor appointments every 6 weeks to remind me, a daily pill to keep the faucet turned off, and scans every 4-5 months in which your distant relative anxiety would show up and we would all hold our collective breath until the results would come back with the words STABLE. 

But controlling my body and my life wasn’t enough for you. Maybe you thought I wasn’t paying you enough attention, but for whatever reason, in 2015, you opened the door for your cousin renal cancer and introduced your cousin to my husband. At this point, I had made my peace with you and had learned to accept your constant presence in my life. But DAMN you for thinking that was not enough. 

Kim and J.R. December 2015

Your cousin was not as well behaved as you and after 10 months, you brought your second cousin Grief. Why? I have no idea. I thought we had an understanding, you had taken up residence within my body, but if I thought I hated you before, I discovered a new level of hatred. Taking my husband and the father of my children was a new low that frankly I never saw coming. 

My girls have had to live with you since they were 8 and 5. They grew up with you as part of their life and they too had learned to accept that you were the distant relative that you had to put up with. 

I feel as if you have just piled on one thing after another and I’m F#@*$%G tired of it. Breast Cancer, Metastatic Breast Cancer, Renal Cancer, Grief. You can all just go take a leap and leave me the hell alone for a while. I’m so tired of you and your dirty relatives.

As if all of that wasn’t enough, you finally found a new way to turn the water back on. And this summer you decided my body was your playground again. Now we are back checking the arsenal to find something that will slow down the leak that you have created. I am not willing to put my life in your control again. I have every intention of fighting you and sticking around to watch my daughters as they embark on the life that you have tried to steal from them not once, not twice but 3 times.

I want you to know that you have just begun to see me fight. And although I know one day you will have the final say, until that day, I will fight you till hell freezes over and then fight you on the ice (#GoFrogs).

That word keeps coming up – Resilient – but what does it mean?

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:

  1. capable of withstanding shock without permanent deformation or rupture
  2. 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:

  1. 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.
  2. Being vulnerable with those around me. Allowing people to see what is going on and not hiding from the bad stuff.
  3. 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.
  4. 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. 

It’s been a good run Capecitabine -thanks for the 7 plus years – It’s time to take a new path

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!

What I learned on a Fly Fishing Retreat for #MBC Women

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.

Practicing my casting skills on a beautiful Saturday afternoon

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.

A beautiful morning to fly fish

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.

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.

« Older posts Newer posts »

© 2020 BuiltaLife

Theme by Anders NorenUp ↑

%d bloggers like this: