Tag: Sarcoma

For the foreseeable future

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How long, exactly, is that?  According to my Orthopedic Oncological Surgeon, it is how long I have to go back to being scanned every 3 months.  As you may remember, last October were my 5-year scans. That was the appointment I was to move from 6 month to annual scans.  I was so looking forward to living in larger increments between “those” doctor’s appointments.  And then they thought they saw something and that led to a bone biopsy.  The great news is it did not show a return of the cancer! The not totally great news is it wasn’t definitive.  So now I return to 3-month scans “for the foreseeable future.”

I don’t know about you, but I don’t do well with open ended vagueness.  I want to know who, what, where, when, why, and how.  In the uncertain world of cancer, it almost never works out that way.   That’s where trust comes in.  Trust in your doctors, trust in your body (sometimes hard when you may feel it has let you down in the past), trust in what your gut is telling you, and trust in God and His plan for your life.  So, as I head into my next 3-month scans this coming week (prayers gratefully appreciated), I will choose to trust this journey will continue to work out for my best.  And that my foreseeable future will be nothing but bright.  I know it will be easier said than done, but I will choose it and then choose it again.  After all, the power to choose how we will view anything that happens in our lives is ours and ours alone.  So, let’s all choose to remain positive and enjoy each day that we are graciously given.  That’s a hopeful choice I can get behind.

 

Be Still and Know

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That’s a tough one for me.  You might wonder which part and my answer is “both.”  Let’s start with “Be Still.”  In this world, how is it possible to be still?  With the constant bombardment of 24/7 news, the ability to be connected anytime and anywhere, cell phones, emails, texts, Facebook, 100s of tv channels to choose from, the internet, and seemingly endless to-do lists, how can we possibly be still?  And then add in being raised in a household where accomplishments and “doing” were valued much more than simply “being,” coupled with my type A, driven personality type and it is a recipe for anything but stillness.  What if someone saw me being still and thought I was lazy?  What value would I bring to this world if I wasn’t accomplishing something?  Who am I if I am not defined by what I do?

Then there is the “and Know.”  Where do I begin with that one?  How do we ever really know?  We can evaluate as many pieces of data as we can gather and try to assemble some level of knowing, but can we ever truly know?  Growing up I remember being told to not be ruled by my emotions.  Decisions were to be made using my logical brain and were to be based on facts.  Gut instincts were devalued or ignored completely.  I learned at an early age that what you thought out was much more accurate than what you felt.  So back to my original question, how do you know?

The last 5 years have been a master’s level course in the importance of being still and knowing.  When you are faced with life and death situations, chronic pain, fear, and uncertainties you are forced to face the importance of finding some time and space to just be still.  Turn off the electronics, phone, tv, anything that keeps you frantically busy and just be still. I find it much easier when I remove myself from my day to day environment.  It seems that there are always too many things to keep my mind racing when I’m at home.  Sometimes that’s taking a drive, going for a walk (not that easy anymore with the neuropathy), or taking a much-needed vacation.  Whatever allows my mind to disengage.  I think that’s what’s really important.  When you can get out of your head, you can begin to be.  Intuition, a concept I never believed in until recently, can begin to surface.  That’s where true knowing comes in.  I am only beginning to experience intuition and it is thrilling each and every time I actually feel/sense it. People see intuition as coming from many different sources; God, the universe, our gut.  I don’t think it really matters what you call its source, I think it’s more important that you learn to feel/sense it.  When you feel your intuition deep inside there is a level of knowing that facts and figures can never provide.  So, my recommendation is to find a place where you can truly be still and go inside yourself.  Ask what you are to know today, and just listen.  Sometimes the answer is a feeling, an image, or a sense, but often there will be some sort of answer, if we are still.  I am just beginning this knowing journey, but it is so much more real and certain than any of my left brain, fact-based journey to this point. Give it a try.  Take a walk on a beach, sit by a mountain stream, visit a park and practice just being.  You may be pleasantly surprised by what you find.

 

Broken into Beautiful

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Being broken is really hard.  There are many different types of brokenness.  Over the last few months I have been dealing with a broken wrist.  It’s amazing how many things you need two hands for.  It seems even the simplest tasks are difficult when a wrist is broken.  I progressed from a cast to a brace to kinesiology tape to skin (really flakey, scaly skin).  I went from not using my left hand at all to doing easy stretching exercises to modified push-ups.  But that type of broken heals and life goes on pretty much as before (thank goodness).

Then there is the brokenness that accompanies something like a cancer battle.  When I began that journey I truly believed that if I survived the surgery, chemotherapy, and radiation it was only a matter of time before I would be back to my old self.  As I was coming back to life from all the poisons injected into my veins and radiated into my bone I held onto the hope that, after a period of healing, I would be good as new.  As the days turned into weeks, months, and years I realized the old me died with the cancer.  I felt “less than” and terribly broken, a brokenness that would not go away.  I wanted what I had BC (before cancer), but that was no longer an option.  If I can’t be who I was before, who am I now?  What is my new normal?

I have been slowly trying to learn who the new me is AC (after cancer).  The first thing I realized I needed to do was mourn the loss of BC me.  That is an ongoing endeavor.  But as I have been walking this road, I have discovered parts of the new me that never would have existed without the firewalk that was my life.  I have a depth that never would have developed had I not stared death in the face and won.  My friends say I am much more authentic and empathetic, traits that weren’t really valued in my prior life in corporate America.  My sister shared that she had always really loved me, but that she liked me more now (I think that may point back to the authenticity noted by my friends).  I have heard that it is where you are broken that the light can shine through you.  I picture myself as a vessel, with all these cracks.  As the sun shines on me some reflects off my broken edges, shining onto others, while some rays shine through my cracks, illuminating the darkness within.

Brokenness, in any form, is not easy.  It is not meant to be.  But if we take a step back, a deep breath, and ask what we are to learn from this experience, we might be pleasantly surprised with the answer.  We are never the same after having been broken, but that doesn’t mean we can’t be better.  Our definition of whole may need to change, but the new version can be stronger and more real than we ever could have been before.  Just as a broken bone regrows stronger at the point of the break, we can grow stronger from all the brokenness we experience.  Let’s embrace our new normal and be grateful for all we can learn during our hard times.  Let’s turn our brokenness into something beautiful.  And no matter what we are facing, let’s resolve to never give up hope!

 

Progress, not perfection

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That’s a tough one for me.  You see, if I get 99% on the test of life, I will skim over that accomplishment and focus on the 1% I got wrong.  I know perfection is an elusive concept, but it doesn’t stop me from always trying to attain it.  That is where I find myself right now.  I have recently reached 2 big milestones, but I am spending my time and energy focused on how much further I have yet to go.  Do any of you do the same thing, or is it just me?  For your sake, I hope it’s just me.

As I mentioned in early blog posts, I broke my wrist in December and had to have follow-up bone cancer scans in January (from my biopsy scare in October).  The great news is my cast is off and my follow-up scans came back clear!!  Instead of savoring that news, I am now focusing on how far I have to go to get back strength and range of motion in my stiff and achy wrist and the fact that my cancer doctor wants to do yet another complete set of follow-up cancer scans in 3 more months, to be sure I am indeed all clear.  Don’t get me wrong, I am thrilled my cast is finally off and I am even more thrilled my January scans came back clear!!  Why can’t I just rest there for a while?  Instead, I’m on to the next thing that must be accomplished and must be accomplished right now.  Would I treat a friend this way?  Is that advice I would offer to a loved one?  No!  If a friend came to me with this perfectionistic attitude, I would tell her she should be so proud of all she’s already done and that trying to be perfect is not something to strive for, unless never succeeding is her top priority.  She needs to remember that that same strength that has gotten her this far will continue to carry her through all she has yet to complete.  That sounds like pretty good advice, doesn’t it?  Maybe I will try viewing myself through the eyes I use for those I love.  After all, shouldn’t we be kind to and love ourselves?  If perfection is something you struggle with, maybe you should give that perspective a try too.  Let’s all agree to begin viewing ourselves through a lens of grace.  Ahh, I feel lighter already.

 

Perspective is everything

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There is a lyric in a song by American Authors that says “This is gonna be the best day of my life.”  It is meant as an upbeat sentiment, but that really depends on your perspective.  During some of my tough days, when I am waiting for test results, in a lot of pain, or particularly concerned with what the future may hold, I think “what if this is as good as my life will ever be?  What if I get bad news tomorrow, and this is the best day of what life I have left?  What if this is gonna be the best day of my life?”  I am not always in this place, but if I’m being perfectly honest, I have thought it more than once.

On the other hand, there are those days where you wake up refreshed and excited about what this day will hold.  Maybe you’re on vacation, in the early stages of a new relationship, or feeling particularly healthy and strong.  Your future looks bright and you feel unstoppable.  In this case, “this is gonna be the best day of my life” means something totally different.  That got me thinking about how the exact same words or the exact same life experiences can feel vastly different based solely on our perspective.  And that perspective, to a great degree, is our choice.  It helps me to see it as a choice because then I am not a victim in this experiment called life, I am a participant.  So, the next time I find myself worrying that this may be the best day of my life, I am going to try to remember my perspective is my choice.  Then, maybe, I can choose to sing along with American Authors that “this is gonna be the best day of my life!”

 

Sometimes a test is just a test

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When I was in school I never minded tests.  I actually looked forward to them.  I was one of those people who thrived under pressure and rose to the occasion.  Not that I didn’t do my part.  I attended all the classes, read the course material, completed the homework assignments, performed the lab work, and studied for the exams.  I did my part and I welcomed the opportunity to demonstrate that fact to my teachers (and myself).  I didn’t sit around worrying that the test would reveal that I was a failure, that I hadn’t done enough, that I was dumb or somehow unable to complete the coursework set before me.  I saw it as a chance to learn the lesson, demonstrate my comprehension, and move on to new material.  When did a test become more than a test?

As many of you may be aware, back in October I had my 5 year bone cancer scans and the MRI showed there may be something abnormal.  That sent me into a tailspin and led to many sleepless nights and a pelvis biopsy.  When the biopsy results came back clear the doctor seemed relieved (nothing compared to how I felt), but wanted to see me back in 3 months (end of January) to do another complete set of scans to be sure. I have been pretty stressed about this upcoming set of tests and then it occurred to me, it’s just a test.  I have done my part to prepare for these tests.  I have changed my diet, worked with a counselor on less than healthy emotional and stress patterns, read all sorts of books on health and healing, attended classes on heathy living and energy healing topics, taken advantage of alternative healing modalities (reiki, holistic nutritionist, massage, meditation), and prayed (a lot).  I am prepared.  Why is it, at this point in my life, I am worried about being tested?  This is just another opportunity to learn the lessons, demonstrate my mastery of the subject material, and move on.  What a difference that perspective makes.  I am going to choose to assign that meaning to the next set of scans.  Just an opportunity to demonstrate my comprehension of the lesson of the last 5 years.  I’m sure this is not going to be a once and done exercise, but why not look at it like an opportunity to prove I am still healthy and whole and not proof that I am somehow less than successful?  Sometimes a test is just a test.  Time to pass with flying colors and move on!!

 

Wishing you a Hopeful New Year!

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When I first started this blog, I had no intention of sharing my struggles in real time.  I felt called to share a message of hope with those who found themselves in seemingly hopeless situations.  Five years ago, I was diagnosed with a very rare type of bone cancer and was unable to find anyone else who had survived it.  Thinking I was on the other side, I wanted to be a voice out there saying that Undifferentiated Pleomorphic Sarcoma of the bone is not a death sentence.  It isn’t!  But in the last 2 months I’ve had a reoccurrence scare, bone biopsy, and (unrelated) broken wrist.  The biopsy came back clear and the wrist is on the mend, but that doesn’t mean I sailed through the whole ordeal on a Hope Wave.  The amount of fear and anxiety that the shadow on my MRI caused is still hovering over me.  They want to repeat the scans in 3 months, just to make sure, and that hasn’t allowed the stress to subside.  Then, trying to relax from all that, I went to a spa and on day 1 slipped on their wet marble floor and broke my wrist.  I am quite aware that a broken wrist is not a matter of life and death, but it was just one more thing (and really inconvenient).

I share all this because I now realize my initial reason for starting this blog may not be the only reason for its existence.  Yes, I want to continue to be a voice of hope for people diagnosed with a rare cancer (or any other health challenge), but I also want to authentically share about the big, and not so big, events that shake our hope in the day to day.  Waiting for clear follow up scans or a bone to heal can lead to times where hope is elusive, but it is not lost.  Momentary, or not so momentary, feelings of hopelessness do not mean you are not hopeful.  It is not an all or nothing thing.  Choosing to remain hopeful, even when your emotions tell you otherwise, is not always easy, but it is always best.  The choice is ours.  So as this new year approaches, I wish you a very Hopeful New Year!!

 

My new candy cane cast

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Man oh man am I getting tired of all the detours.  First it was “Your 5 year scans are clean” and then it was “The Radiologist thinks he saw something on your MRI and we need to do a bone biopsy.”  Next it was “Your biopsy is clear” and then it was “But we want to repeat all your scans in 3 months to be sure.” Then I was planning a 4-day spa get away with my sister to celebrate life and the upcoming Christmas holiday and now I have a bruised tailbone, broken wrist, and my arm in a cast for at least 6 weeks.  You see, we were enjoying the spa’s “Relaxation Room,” feet in a warm foot pool, and then I was called for my facial appointment.  The floor in this room is marble, it was already wet from other’s feet, I added my wet feet to the mix and had to walk across the room to the towel shelf to grab a towel to dry my feet.  The next thing I knew my feet were off the floor and I landed on my wrist and tailbone.  Ouch!!  After the staff picked me up off the floor and took me to the local Urgent Care, my tailbone and wrist were x-ray’d, and it was determined I had a bruised tailbone and broken wrist.  My 4-day spa vacation turned into less than 1 day, as I had to check out and head to the local hospital to meet with an Orthopedic Surgeon.  I tell you all this for two main reasons.  First, as it is difficult to type, I may not be posting as regularly as I have been for the next few weeks.  Second, although I am really tired of doctors, x-rays, pain, and unforeseen health issues, it could have been much worse!  I could have hit my head on the marble floor and had a much more dire outcome.  It also appears I may not require surgery and for that I am grateful.  I would really appreciate any prayers or positive thoughts you send my way for reduced pain and speedy healing.  I am hopeful, in the midst of this, that this experience will open additional opportunities to practice what I preach.  In all circumstances there is something to learn, something to be grateful for, and above all else, there is always hope for what tomorrow may bring (and I have a candy cane cast in the mean time).  Here’s to a brighter tomorrow for all of us!

 

“I’ve got this”

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Do you ever wish someone could reassure you that everything is going to work out? That they could tell you, no matter how bleak things look right now, it will be okay in the end?  That’s exactly what I was longing for after my first visit to an Oncologist.  They had found a hole in my pelvic bone (more on this miraculous find in a future post) and had referred me to an Oncologist.  She believed I had stage 4 multiple myeloma and sent me for blood tests to confirm her hypothesis.  I was panicked.  When the bloodwork came back, all my numbers were right in the middle of the normal range.  I wondered, what does that mean?  I don’t have multiple myeloma?  Everything is fine?  It’s all a big mistake?  I’m not going to die?  It was then that I heard God say, almost audibly, “I’ve got this.”  What?  I am not someone who regularly hears God speak to me.  I wish I were, but I am not.  There are only a handful of times I truly believe I have heard Him say something to me and this was one of them.  I was initially comforted by this and took it to mean I didn’t have cancer after all.  I would later learn that was not a correct interpretation.  I did have cancer.  A really rare, really aggressive bone cancer.  So, did I misunderstand or did He never tell me that in the first place?  There were many times over the next 12 months that I asked myself that very thing.  There have been many times recently, like during my biopsy last month, that I questioned it again.  But I know that I heard Him say that to me 5+ years ago.

How can I reconcile what I truly believe God told me and the continual trials I encounter along this cancer journey?  I have come to believe that He did tell me He “had this,” but it did not mean I was cancer-free.  I wanted it to mean that, I initially thought it meant that, I still want it to mean that.  What it did mean is that He was going to work this out how He saw fit, that it would ultimately be for my good, that He had not dropped the ball here.  It also meant that He was not going to leave me to walk this path alone.  That He would be beside me, and sometimes carry me, through every unbelievably tough day.  There were many days that I didn’t feel him there, that I didn’t like the way He was choosing to “have it,” but He “had it” none the less.  It also didn’t mean He “had it” any less if I hadn’t survived the last 5 years.  I am so grateful He has seen fit to leave me here so far, but that doesn’t mean I’m not fearful every time something new comes up.  I am human.  It does mean that I remind myself of those words I truly believe He gave me all those years ago and try to trust them.  There have been many times, during dark days, I have pleaded for more words of reassurance that have not come.  But God is there when He speaks and when He chooses to remain silent.  He is always there (we never have to do this on our own) and He always loves us unconditionally and completely.  That is a reason for hope!

 

Reuniting with my first love

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There’s something very special about first loves.  I experienced it back when I was 15 and it positively changed my life from that point forward.  We were both part of a Christian singing group and had the wonderful opportunity to tour locally in New York state, various locations around the United States, and in Europe.  But as young kids often do, I wanted to see what else was out there, so after a year and a half together, I dumped him.  We went our separate ways.

Fast forward 35 years and many separate life experiences (mine in Pennsylvania and his in New York).  Our singing group had a reunion (coincidentally or not, organized by my first love) and I decided to attend.  We knew almost immediately that our feelings for each other had never really changed, but how could this work?  To make a very long and emotional story short, 11 months later we were engaged.  Two months after that I received my cancer diagnosis.  A lesser man would have backed away, after all this is not what he signed up for.  Not my guy!  He pulled me close, said he loved me, and we would do this together.  And then he told me something I will never forget.  “I knew God brought us back together, but now I know why He brought us back together right now, so I could take care of you through this.”  We were married between chemo cycles 4 and 5, because we were determined to not spend one more minute of our lives apart.  He is selfless love personified to me and I am forever grateful.  I often think about a statement made by Mike Dooley, author of “Notes from the Universe.”  He was discussing perspective and said something like, “if you are struggling with pain in your right knee, focus on your left knee and be grateful that your left knee doesn’t hurt.  You are not denying your right knee hurts, you are just choosing to be grateful that your left knee does not.”   I now understand that sometimes reasons for hope during dark times are right in front of you (as close as a loved one).  It doesn’t remove the dark situation, but it serves as a reminder that there is hope in the midst of it.