The Long Way Home

     What is it about getting older?  As a kid, the future was full of options and dreams. Some fears too, but mostly dreams.  Now I find myself over 60 and closing in on the years where retirement and relaxation should be occupying my mind.  Instead, I sit here wondering if I really know the way home to the little boy with the dreams.

    A little background for you.  The past few years or so have been a watershed of memories, deep introspection, and hard work on who I really am when no one else is watching.  Believe me, its not a journey for sissies.  Life has a way of rerouting us over and over again.  Sometimes it's marriage, divorce, or kids that force us to reevaluate our dreams and ambitions.  Maybe we saw ourselves doing something different with life only to find that we made choices, or had choices made for us, that caused us to veer off the path we thought we were supposed to follow. Sacrifices for family or opportunities missed because we had too much fear or insecurity to take the next step. It happens all the time and most of us feel that nagging voice beckoning to us from the dreams we once carried close to our hearts.

   Now, I'm not complaining. I have a wonderful wife, great kids, and adorable grandkids. I even have a few close friends that love me.  I'm certainly not rich but I'm doing OK.  Life has been hard at times but also rich and full in others.  So, what's with all the melancholy and bubbling emotions?  I wish I knew. Oh, I have some ideas (Joy's cancer, the sale of my business, missing my kids, etc.) but those are just the vehicles that took me on this journey.  They are the motor that drives me to find the little boy with the dreams.

    Have you ever lived your life as a not? No, I didn't misspell that. You know what I mean.  I'm not going to be like -----, or I'm not going to make that mistake, or how about, I'm not going to let them see me hurting.  I think everyone does some of that but some of us have spent way too much time living there.  Not sure if you do that?  Let me ask you a simple question.  When was the last time you felt complete joy?  I don't mean happy. I mean I want you to name the last 3 times in your life where you were literally overcome with joy to the point where you were oblivious to your surroundings.

   I can't name them because I taught myself years ago that I never going to feel anything too deeply.  I put on a self made mask and did the best I could. At least I thought I was.  Now, as I'm facing the issues around the cancer in the woman I love and the sale of a business that has been my identity, I began to realize that I was numb and unable to dream anything at all.  Surviving is not a dream destination. Surviving is not intended to be a way of life.  Doing nothing but getting through each day and surviving to fall into a restless sleep only to wake up and do it all over again is not living. There can be no joy in that type of existence.  Depressed yet?  Sorry. Let me shift gears.

   Joy and I are hosting a book club at our house and the subject is the least likely topic anyone wants to talk about.  It's a book called "Daring Greatly" by Dr. Brene Brown.  It's a book about vulnerability and shame. Scary stuff indeed.  She studied the topic for over 10 years and her findings are often like surgery without anesthesia.  I won't ruin the whole book for you but do want to talk about the one topic that set my mind and heart to a full spin cycle.  Let me give you and example from her book;

"Vulnerability is the cradle of the emotions and experiences that we crave. Vulnerability is the birthplace of love, belonging, joy, courage, empathy, and creativity. It is the source of hope, empathy, accountability, and authenticity. If we want greater clarity in our purpose or deeper and more meaningful spiritual lives, vulnerability is the path." 

    Here is another quote that addresses the connection between vulnerability and experiencing true joy. Try this one on for size;

"Once we make the connection between vulnerability and joy, the answer is pretty straightforward: We're trying to beat vulnerability to the punch.  We don't want to be blindsided by hurt. We don't want to be caught off-guard, so we literally practice being devastated or never move from self-elected disappointment."

    Ouch!  That is what she calls foreboding joy.  In a nutshell, it means never really allowing joy to be fully experienced because it feels like a trap.  Remember when your child was a newborn and you longed for the day when you could get a full nights sleep again? How many of you did like me and went into the room to check on the baby because they were sleeping so soundly? That is foreboding joy. Rather than being excited to have them sleeping soundly, we begin to imagine that something must be wrong so we go and check. That's a poor description but that is exactly how I've chosen to numb out my life.  I've laughed when telling friends my philosophy of "expecting the worst and hoping for the best".  To my twisted way of thinking, I was never disappointed if bad things happened and mildly surprised when good things came along. Made perfect sense to me but I was so wrong. What it did was to insulate me from really engaging with life and allowing myself to fully feel joy when it was right in front of me. How sad.

    I've said all that just to say that I'm not going to live there anymore. I am going to look whatever comes straight in the eye and experience whatever comes up. I'm going to be in every one of Joy's appointments and we're going to talk about where we are and what we're feeling as it comes up. I'm willing to lean into the fear in order to experience the joy that I know will be on the other side when this cancer scare is over. I'm going to change the dressings and be completely involved in caring for her for this part of her life so that I can fully appreciate her health and vitality when this is over. I want to be in the arena with her and not sitting in the stands numbing out my fears.

    When we look back on the year prior to Joy's diagnosis, it is absolutely amazing to see the journey and how God put us in the right places, with the right people, at the right time. There is no mistaking His hand from months before we knew where we were headed. This is no accident. We are exactly where we are supposed to be.  Thanks so much for enduring this lengthy post. I appreciate the prayers and love so many of you are sending our way.

   

 


 

Waiting for the war to begin

     This is a picture I took out of our bedroom window some months ago. I remember telling Joy and posting it on FaceBook that storm clouds were headed our way. The colors and light were breathtaking. I couldn't keep my eyes off it.

    I said this blog would be honest and even raw at times.  Today is a difficult day. I'm struggling with the balance between creating a place where friends and family can get information and a place where I can be real about our journey. I don't want this entire blog to be about cancer. I want parts of it to be funny and light but I can't sugarcoat how I feel this morning. Joy and I got some tough news a couple of days ago about the biopsy last week. What the doctors felt was a shadow under the tumor was actually another mass. The stunning part is that it is twice the size of the original tumor. Joy called the doctor twice to confirm what she'd said because we were sure she had misunderstood. No mistakes. She really said this one was 4cm. They aren't sure if it is attached to the back of the original tumor or a separate mass. It was apparently hard to see because most of it protrudes behind the first tumor toward the chest wall. We are praying that it hasn't affected the chest wall behind the breast. The size alone automatically makes this a Stage III cancer. That is a game changer. Joy has endured 5 or 6 mammograms, the same number of sonograms, at least 2 MRI scans, and 3 biopsies in the last month. The big question we struggle with is how is it possible that a second tumor so large wasn't detected? There are no answers available.

     Out breast surgeon (the quarterback of our treatment team) is out of the area until next week so we won't have any official answers until our appointment next Tuesday. I doubt the radiological oncologist can give us any answers when he tries to drain the blood trapped in her breast from nicking a vein during the last biopsy. She is having that done tomorrow. So, we have no long term answers but we know this war has escalated and our options for treatment are quickly diminishing. We were considering a lumpectomy with radiation and minimal healing time. That option is off the table and we now realize that chemo has gone from a slight chance to a very high likelihood. We still have decisions to make on whether it will be a single mastectomy or if both breasts will be taken.  The only thing we know is that we want this cancer removed as fast as possible.  

     For our friends and family, please understand that I'm putting this out there so you can have answers to your questions without the awkwardness of asking us directly. We want your prayers and support and I promise to do what I can to keep you up to date. The reason I say all that is to let you know that answering the same question dozens of times is exhausting emotionally. More so for Joy than for me. I process differently and need to verbalize my thoughts, hopes, and fears. That isn't the case for Joy. She has been very stoic and outwardly calm during this journey. As such, it's much harder for her to talk openly other than general details. Please respect that. If you need or want an answer, please ask me and I'll do what I can to provide an answer. I feel like that is my primary role during this war. I'm going to protect her as much as possible.  The outpouring of love and support Joy has received so far has been overwhelming. From the family, our BT community, friends, and her co-workers at the bank, we are grateful for all you've done and said. Thank you from the bottom of our hearts.

    I have one last request. I'm learning the hard way that the Internet isn't always a good place. Like many of you, I searched the Internet for advice, explanations, and to get a better understanding of what we are facing. Big mistake. Don't do it. All it did was terrify me and Joy. When you begin looking at survivability rates based on the stage and grade of cancer, you are borrowing trouble and worry.  Just about a week or two before we discovered the cancer, I read a devotional in "Jesus Calling" by Sarah Young and it has had a profound effect on my mindset throughout this process. It said something to the effect that one of God's greatest gifts to us was that he never gives us more than one day at a time because He understands that we wouldn't have the courage to go on if we knew everything that we would face in the future. I've thought of that countless times since then and thanked God that I don't know everything. I have to trust Him and the doctors to get Joy through this treatment. Countless others have gone down this road before and so will we. We think we know how this will end but we have no guarantees. I know this post is a little heavy and I'm sorry. It's exactly where I am this morning. I remain confident that Joy will survive and that our lives will return (maybe even better) in a year or so. My heaviness has to do with the knowledge of what Joy will have to endure, both physically and emotionally. Now, back to the business of this day and making sure I live it intentionally.  That means not obsessing about the gathering storm clouds outside my window and trusting that storms are a part of any long journey.

Hugs and Happiness

   Those of you that really know me can get up off the floor now. Yes, I really am writing this post and I do know the definition of both words. Granted, I am perceived as a skeptic and I often come off as less than positive but that doesn't mean I don't have my good days. Unfortunately, this isn't one of them.

    Sorry, it's Monday, cloudy, and I slept poorly last night. Since there is so much on our plates right now, I decided to practice feeling good and engaged. You know, fake it til you make it.  The easiest way for me to do that is to start looking at pictures. When I started the day I felt like the guy on the right in the picture below.

        I'm not sure even a mother can love that face. It looks like his mother rocked him to sleep every night and used really big rocks. I wondered how often this poor guy was hugged in his life. It got me looking for hugging pictures.

    This one made me laugh. Yes, it is a live alligator and, yes, I was afraid. Two women had held him before I worked up the courage. He also had his mouth taped shut or I wouldn't have been within 20 yards of him.  The alligator made me think how great it would be if we could tape shut the mouths of those difficult people in our lives so we could hug them without risking injury or bloodshed. No doubt there are many that feel that way about me as well.

    Some hugs are fun but messy. This one is from a local Dirty Girl mud run to raise money for cancer research. Little did we know that we would soon have a deeper connection to breast cancer. Tee and Lisa were two of the friends that participated and then made sure I got muddy at the finish line. Next year I'll be wearing sweats. It was a fun event and Joy and I were there as cheerleaders and photographers.

    This may not be a hug but there is no doubting the love a dog can add to anyone's life.  If I could be 1/2 the man my dog thinks I am, I would be a great guy.

    Whether it's a picture from Tommy and Elizabeth's wedding with all the family but Josh and Angela,

    to the photo booth pictures of Josh, Angela, and Thurston at Brooke and Thomas' wedding this past May.

    These are the things that keep me going and cause me to smile more often than I'm likely to admit.  Ok, I'm ready to face the day again and thankful for the family on this journey with us. Even though all our kids live quite a distance away, Joy and I are blessed to live in an age with Skype and FaceTime so we can keep up often.  We're ready for where we're headed. Thanks for walking with us.

New language immersion

    I thought reading a doctor's signature was tough. Little did I know that understanding what they say is even worse. Now, some doctors are fine and able to communicate perfectly and, thankfully, the primary breast care doctors have both been very open and easily understood. Not so much when you get to the specialists. I get the sense that they know you aren't tracking and they really are fine leaving you with more questions than answers. Ignorant me, I thought you had a primary doctor, a surgeon, and an anesthesiologist when you had breast cancer. Well, so far we have a primary breast care doctor, a medical oncologist, a radiological oncologist, a plastic surgeon, and we'll be adding the anesthesiologist soon. That's hard enough to track but when you double it by asking for a second opinion and throw in the fact that English isn't the primary language for half of them, well, you get my drift.  That doesn't even count for the countless nurses, interns, and other folks that tell you to get undressed and wait.

    Yesterday was one of those days. We knew we had a meeting with the medical oncologist and I wanted badly to be there because it is so crucial to have at least 2 sets of ears listening to these doctors.  I met Joy at KU Med Cancer Center and we found out that we had been directed to the wrong campus for the doctor we needed. Apparently, they aren't sure where any of them are either. OK, cheap shot but I was aggravated.  We got back into our cars and found the other campus and began to wait for the oncologist.  Another doctor ( we have no idea who she was other than she seemed to be connected. Intern? Probably.) examined Joy, made lots of notes in and incredibly random fashion on the back of a blank sheet of paper, and left the room. A short time later, the medical oncologist came in and did the same exam but without any notes this time. He then began giving us news and options at a pace that felt like we were suddenly taking a drink from a fire hose.  He wanted Joy in a clinical trial, blah, blah, blah.......... I confess I left the conversation some time around his comment that we'll leave the tumor in there for another 4 to 6 months and then decide on what type of surgery is needed.  Then he tells us that no reconstructive surgery will be needed. Excuse me but I fail to see how you can take a chunk out of a breast the size of a scoop of ice cream and not leave the breast mangled.  Not one of the other umpteen doctors has even mentioned that as a possibility. That concluded her first doctor visit of the day.

    Joy then had an afternoon appointment with the Radiologist (back at the other campus) for an MRI biopsy on the left breast (again). They are worried that the area under and behind the original tumor may be a second tumor and wanted the added detail of the MRI to guide them in the process. Poor Joy endured about 90 minutes face down on the MRI cart trying to keep perfectly still while 2 doctors did their best to locate the area, mark it, and then do the biopsy. I think she said they slid her in and out of that machine 4 or 5 times. After it was done, she noticed pain that hadn't been present on the other biopsies but figured it was due to the fact that this one was very deep in the breast and up against the front of her chest wall. She left to drive home and felt increasing pain all the way. After calling the doctor, they wanted her back right away so I ran home to pick her up and off we went, in rush hour traffic, back to the hospital. By the time we got there her left breast was severely swollen and very painful.  Another sonogram revealed an 8cm pool of blood inside the breast (about the size of a fist) and that they apparently nicked a blood vessel during the biopsy.  There is very little they can do about it but wrap her chest very tight and keep an ice pack on it most of the time. It may take months for the blood to be reabsorbed unless they can figure out a way to drain it. We have no idea what impact this has an any possible surgery or reconstruction.  Sigh.............

   The worst part is seeing Joy in such pain. She is a trooper and handles pain way better than I ever will (what woman doesn't do better than their man?) but that part has been where I feel the most helpless.  She goes back today for yet another sonogram and to meet with the Radiologist. Thankfully, Elizabeth rove up from SE Kansas last night and will go with her.  We were warned that the next 6 months were going to be tough and I'm sure this is only the tip of the iceberg but it's obvious that we are just beginning to understand this journey and what it will take to get to the other end. One day at a time, one step at a time.