Category: Stage 4 Thriver (page 1 of 2)

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?

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.

A Lot has happened in Two Months

What has happened in the last two months? More than you can even imagine.

When you have cancer, you never really know when things are going to get crazy. Well, for me, that happened (again), in late November and December.

You see, I had been having pain in my reconstructed hip and then an infection started to show up.

This was new, odd, and completely unexpected. After all, I had my hip reconstructed six and a half years ago, in August 2011 (you can read more about that here).

My surgeon did an MRI in November to see if there was anything else going on and, thankfully, the results were that there was some inflammation. The surgeon aspirated it and sent that off for a biopsy and it, too, came back negative (yea again).

In December, after several rounds of antibiotics not really working, the surgeon decided that it would be best to “go in and clean it out.” It meant a trip to the hospital and a “small surgery” that would only take about 30 minutes.

On December 9th, I arrived, completely at ease, because the MRI and the biopsy had both indicated that this was nothing more than an infection, and the “small surgery” would fix everything.

That surgery did take only about 30 minutes. However, what the surgeon found when he got in there was that my entire prosthesis was infected. After much deliberation about how to proceed (I will spare you all of those details for now), it was determined that my prosthesis (all of them, after all the original surgery was much more than just a hip replacement).

The morning of December 14th I went back to surgery. This one was much longer than the “small surgery” by several hours. Afterwards, I had nothing holding my hip together anymore.

The human body is an amazing thing. I left the hospital on the 18th of December (got to spend Christmas at home with my wonderful daughters) on a walker. I was putting about 20% of my body weight on my leg, and my surgeon was/is hopeful that I will build enough scar tissue and muscle to be able to walk with a cane.

January came and I was back to physical therapy. If you want to see a physical therapist at a loss for words, tell him you do not have a hip anymore and that you have a goal to walk with a cane.

I started going to PT three times a week, and have now graduated to 2 times a week. Each time they introduce a new exercise, they ask if I think I can do it or not. My response is always “I’m willing to give it a shot. If it doesn’t work, I will let you know.”

In the midst of all of the physical therapy, it was also time for my regularly scheduled scans. This article does a great job of explaining the roller coaster ride of living from scan to scan.

I am happy to report that “it was just an infection” in my hip, and all my scans showed that I am STABLE. I will continue with PT, stay on my current medication that has kept me stable for over four years, and continue to live joyfully until the next scan.

 

 

 

 

 

What NOT to Say to…. well….Anyone

What NOT to say….. I was going to say to a cancer patient or caregiver, but honestly, to anyone. These phrases should not be in your conversation go to’s

What NOT to say

God doesn’t give you more than you can handle

Let me start by saying I am a Christian. I believe in a loving God. That being said there is so much that goes into that one statement. First, it implies that God DID this to you. Which brings the debate about pre-destination. I don’t believe that God GAVE me this. If He did, we are going to have a long talk if and when I meet Him in person. I know I’m not the only one to have gone through cancer. Second, the statement implies I don’t need any help. FALSE. I cannot handle this and God knows it. God wants me to ask for help, from him, from friends, from whatever community I am involved in. We are not here to do this thing called life alone.

I cannot handle what has been GIVEN to me. I must ask for help. If I don’t, I will go insane.

God has a plan for you/this

When you are in the middle of a crisis situation (i.e. cancer patient/cancer caregiver/etc) the last thing you want to hear is God has a plan. Again, we could talk about the pre-destination debate. But let’s not. There is so much to be discussed there, a blog post would not do it justice. I do believe that God can turn what seems like a horrible situation into something positive. I am of the belief that God’s ultimate plan is for us to Love Him and Love those around us. Bob Goff said it best in his book Love Does (link to audible book, not an affiliate link, just highly recommend the book). Does that mean that cancer, for me, my husband and my father was part of His Plan? My answer is NO. And please don’t tell me that. Just act out of love towards me. What does that look like? Be a friend, bring me lunch when sitting in the infusion room for endless hours. If you ask if I want to go see a movie and I tell you I can’t leave the house, ask if I would like you to come over and watch a movie here.

Just don’t tell me God has a plan. I will tell you God’s plan is Love, it has nothing to do with Cancer.

 I know how you feel

Do you really know how I feel? I don’t think so. Do you have stage 4 cancer? Do you have a husband that ALSO has stage 4 cancer? Do you have a parent that ALSO has stage 4 cancer? I know I’m not the first one in this situation. I won’t be the last. But quite frankly, the chance you know how I feel is somewhere between slim and none . You probably aren’t even in the same ballpark.

If you don’t know a person’s specific situation, it is highly unlikely you know how they feel. If you do know the situation, the more appropriate response might be “I can’t even imagine how you feel.”

And last, but not least, my personal favorite “So, what happened to you?”

As I’ve said numerous times, I don’t look like I have cancer. I look healthy. Most people see me and probably wonder why does she walk with a cane. In an effort to feel connected, the question usually comes. Sometimes, I can just smile and change the subject, but other times it is harder. Especially when it is combined with the “I know how you feel” statement above.

I don’t like to make people feel uncomfortable, but when they persist, it usually ends up awkward for them. Recently, I was picking up my car. The cashier noticed I was walking with a cane. The questions started. I tried to change the subject, but she did not take the hints. As she continued, she told me about her hip surgery and how it was the best thing she had done and she wished she hadn’t waited so long. Great, I thought. I’m happy for you. Then, the awkwardness. She asked “So, what are you waiting for?” Really? I did not know this woman and spoke to her for less than 5 minutes but she wants to know what I was waiting for. In my best I didn’t want this to get awkward tone, I told her I had surgery, I had stage 4 cancer and that I would use this cane for the rest of my life. In my head I added “Thanks for asking!” The cashier next to her also figured out quickly how awkward the situation was, they both offered to keep me in their prayers. I paid my bill and left.

A great general rule, if you are in a situation where you are interacting with someone for what should less than 5 minutes, don’t ask “what happened to you?” Ask them if they are having a nice day. Tell them you like the shirt they are wearing. If they look like they need assistance, offer help. Just don’t make the mistake of asking “what happened to you?”

 

What does it mean to be Strong?

I have always thought I have to be the strong one for everyone around me.
Last night I learned being strong is not what I was really doing.
I have a habit of taking on everyone’s troubles as my own. I care deeply for those around me, therefore, I take on their problems and try to fix them. If I can’t fix them, I worry about how to fix them. I carry this weight around like an anchor. The more I take on, the more the anchor sinks to the bottom.
From the outside, I am able to give the impression that I am gently treading water, but on the inside, the anchor is pulling me down into a whirlpool I can only escape from if I let go of the anchor. But I refuse to let go (cue the song from Frozen, yes, I hear you singing along).
Why do I do this? How can I learn to be strong by letting God take my anchors.
This morning I listened to a short meditation (you can the meditation here). The meditation asked me to see a bright light and let it surround me. The light, representing God was enveloping me. As I visualized the light the old children’s song played in the background of my mind “This little light of mine I’m going to let it shine.” As the words played over and over in my mind, and I tried to visualize the light, I found myself wanting to rewrite the words.  It is NOT a little light. It is as LARGE as we can imagine and then continues to grow to proportions that are beyond our imagination.
After the brief meditation, I took my morning coffee and a small devotional book and sat out on my deck. The devotional was a book I hadn’t picked up in months.
Not normally my habit (I usually start at the beginning and read everything in order), I opened the book to a random page. The first words I read were “you are in Me and I am in You” (from Jesus Today by Sarah Young). As I read further it said “you are filled with my Divine presence.” I’m constantly amazed by the presence of God in our lives when we take the time to invite him in and we are willing to listen.
So today I begin a new way of thinking about being Strong. I am letting go. Letting go of things that I have no control over. I am giving that anchor that has been weighing me down to God. He is so much more capable than I am.
I am going to ask the Light to come in each morning. And each night, knowing that I will resort to my old ways, I will ask God to take the anchors I have picked up along the way and tell him Thank You for taking the burden off of me.
What anchors are you carrying?

How are you feeling?

How are you feeling?

I get asked that a lot.

If I’m being honest, I feel:

  • Angry
  • Blessed
  • Cheated
  • Determined
  • Exhausted, emotionally and physically
  • Frayed
  • Guilty
  • Hopeful
  • Inspirational
  • Jaded
  • Knowledgeable
  • Loved
  • Maternal
  • Needy
  • Optimistic
  • Pessimistic
  • Queasy
  • Reassuring
  • Sentimental
  • Terrified and Thankful
  • Useless
  • Vulnerable
  • Warriorlike
  • Xenodochial (learned a new word today – friendly to strangers)
  • Yucky
  • Zero

It has been 11 weeks since my husband was diagnosed with cancer. And I still don’t have the answer to the question

How are you feeling

I think that is because it depends on the time of day, the day of the week, and generally what has been going on that day.

There are definitely times when I feel optimistic about the treatment and the potential for beating this nasty disease. I mean, I have been fighting this thing for 12 years. If I can do it, so can he.

Then there are times when I look at the Christmas tree and hope that Christmas will be a joyful experience for all of us this year. Not knowing what the future holds.

There are days when I put on the armor and am ready to fight, and there are days when I am physically and mentally exhausted and think “I just need to make it til bedtime so I can start fresh tomorrow.”

There are days that I just don’t know what I’m supposed to feel, so I just feel zero, zilch, nothing. That’s probably not completely true, because even on the worrisome, exhausted, angry days I still have Love and Admiration for the man I call my husband.

We are in this fight together. We have good days and we have bad. But we have each other to get us through and give us a reason to make it to tomorrow when we can have a renewed sense of hope.

At the end of each day, before I finally fall asleep, I thank God for all He has given us. A good marriage, two beautiful daughters, love, laughter and friendship. I feel BLESSED.

I just ordered the ‘Thankful Heart Gratitude Journal’  from FitlikeFlint.com and I am excited to give them as Christmas gifts. Because remembering the little things that make us grateful makes you and the person you are writing about feel Blessed.

I need a Goal

It has been 10 days since my last post (4 Things I learned during my 31 day writing challenge). That almost sounds like a confession. I guess it is. I confess I have not been focused since the 31 day challenge ended.

Today I realized that I did not include the most important thing that I learned during the challenge. Or maybe, I just figured it out and therefore didn’t include it because I didn’t know yet.

During the 31 day challenge, I wrote everyday. I committed to the writing and even though I was the only one holding myself accountable, I was able to accomplish the feat even when life threw curve balls at me and my family.

Having not written or posted for the last 10 days made me realize that a tangible, defined goal is what I need. Call it motivation. Call it accountability, or simply call it a goal.

So today I set a new goal. And I hope that you will hold me accountable.

I will continue to tell my story (I don’t want to say finish, since I am still here and kicking) and get you caught up to the current state of my health by the end of January (hopefully sooner, but with doctor’s appointments and the holidays, I am giving myself some grace).  I will post a new part of the story each week. Along with my story, I will introduce you to my husband and include his story, making the whole thing now Our Story.

If you just joined me on the 31 day challenge, welcome to My Story, Our Story.

Is there something that you want to do but haven’t set a goal? What is holding you back?

 

Don’t let Worry steal your Future

Last Sunday the sermon was about worry.  The preacher mentioned that there were studies that indicate that worry is a sign of intelligence. This post on Huffington Post, cites a study that found a relationship between worrying and verbal intelligence.

I admit I have been a worrier in the past. (I’m not trying to suggest that my verbal intelligence is high). But honestly, that was before I was diagnosed with cancer the second time. I guess I didn’t learn my lesson well enough the first time, so maybe I am an anomaly to the intelligence/worry correlation.

In 2010 when I got the news that my cancer had metastasized, I will admit I was worried and scared.

Scared for what that meant for my family. What would happen to them if I wasn’t around. After all, my kids were in middle school and high school. This might be too much for them to handle.

As happens when you get that kind of news, you go straight into fight mode. You find out what the test results are and you talk to you doctors to find out what the next course of action is. (You can read more about how this journey started by reading My Story and following along).

Since I wasn’t able to work during this time around due to physical issues, I felt isolated. Some wonderful friends talked me into joining a bible study at our church to help get me out of the house.

This was when the change started to take place. I participated in a bible study group for several months, and then found another class that was a more in depth study.

The small group (less than 15) and the daily reading and learning slowly began to change my outlook.

I began to understand that I could not change the fact that I have cancer. The best I could do, for me, for my family and for my health was to live life without worrying every day.

Easy?

Continue reading

It’s Like that game…

Do you remember the game Perfection?

It was one of my favorites as a kid. I was pretty good at it. There were about 25 pieces that you had to put into the correct holes in the board. Even though you played against other players, you were really playing against the clock. There was a 60 second timer. If you didn’t get the pieces in the correct holes and the timer went off, the board popped up and spit the pieces in the air.

TimerIt always seemed like the timer got louder and louder as it counted down to Zero.

Today was one of those days that a #Lifer feels like the timer is getting louder and louder and the clock is counting down to zero. Continue reading

It’s 2015 and there is no Hoverboard….

This morning I sit here in a quiet house wondering how time has gone by so quickly.

My youngest daughter started her senior year of high school this morning and I can’t help but wonder what I would tell my younger self to do differently.

 

In the midst of young children, work, school, church, mortgages, bills and trying to get by we can get caught up in the distractions. I pray that my children do not think that I pushed them aside as a distraction, but instead did not let the other distractions take too much time away from them.

I am extremely proud of both of my daughters. They are smart, funny, beautiful and love God and life. I think my husband and I did a pretty good job.

But still I wonder.. “Could I have done better?” and if so, what?

Continue reading

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