Tag: trust

And they thought it wasn’t possible

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“They” thought it wasn’t possible or at least it was highly unlikely.  I recently got home from my ten-year bone cancer scans and I remain cancer-free!  Okay, no one has ever said that, they say “no evidence of disease,” but I’ll take it.  And although my surgeon told me at the end of the appointment that he would see me in a year (as he has every year recently, before it was much more frequent), his after-visit summary posted online said so much more.  More on that a little later.

My bone cancer was a very rare and very aggressive sarcoma and the prognosis was not favorable.  You can find all the details in earlier blog posts.  So, each year that passed without a recurrence was both wonderful and remarkable.  Every visit to my surgeon for monitoring scans caused so much stress and anxiety and I often wondered how many years follow-up was necessary and responsible.  After about seven years, when I would ask my surgeon at each appointment (I suppose I was hoping the answer might someday change), he would respond that I had good insurance, so why not?  I would think “Why not?  Because each and every time I have to visit with you my PTSD kicks in with full force.”  I discussed this topic many times with my counselor.  He would always say I would know when/if the time was right to stop these appointments.  My intuition would let me know.  My intuition and I are not on as good terms as I would like.  I spent the first many years of my life living completely in my left brain.  There was no room for “feelings” and especially no room for listening to them if I had them.  Heading into each appointment I would pray that if I was to determine I was followed long enough I would be given some sort of confirmation.  Let me clarify something here.  I was not trying to stop monitoring my cancer status one second before I responsibly should, but I also didn’t want to keep putting myself through this solely out of fear.  So, I asked again this visit and his response was “why, do YOU want to stop monitoring this because it IS always your call, but your insurance will cover it?”  That may sound like a benign response, but my surgeon (in my opinion), although brilliant in the operating room, is very passive aggressive in person.  I’ve heard people refer to it (in relation to him) as “a God complex.”  That comment was very much said as if he did not recommend it, but if I wanted to override his recommendation he couldn’t stop me.  I made another appointment for next year on my way out.

This is why I was so surprised and excited when I read his after-visit summary.  He would never say anything the least bit encouraging during an appointment and was even more careful to not put anything remotely encouraging in writing.  But there it was.  Under the heading of “Plan” it said “At this point, it has been 10 years.  Chance of recurrence is very low, but not 0.  Her options are to follow-up as needed or we see the patient back here for routine oncology surveillance follow-up in 12 months with appropriate imaging studies as ordered.”  No doctor can ever tell anyone their chance of cancer is zero, but for him to put in writing that my chance of recurrence is very low and to offer the option of following up as needed going forward felt like exactly what I had been asking both my intuition and God for.  So, I canceled my 11-year follow-up appointment.  I won’t hesitate to schedule an appointment, if there is any question about something, but I really feel that was the confirmation I was requesting.

My Undifferentiated Pleomorphic Sarcoma bone cancer was so aggressive it doubled in size between the initial find and final diagnosis three months later.  Many of my other doctors have expressed their opinion that if any of this cancer was still remaining in my body it would have shown itself by now, but my surgeon never said anything like this even when I would ask him point blank.  So, his note spoke volumes to me.  I am reminded of my initial prognosis all those years ago and the bleak odds even though I did surgery, chemotherapy, and radiation.  There was no one in the medical field that I spoke with who really thought I’d be here ten years later.  But my family and I decided to take it one day at a time and never give up hope.  To my doctors I say thank you, to my family and friends I say thank you, but most importantly to God I say thank you.  I do not have my head in the sand, I am well aware there are no guarantees in life.  I will continue my ongoing scans/appointments for my more recent breast cancer diagnosis, but for now I am going to live each day choosing to believe I am healthy (even on the days my fear creeps back in).  When I reflect on my initial prognosis and if any other health concerns arise in my future, I will try to never forget something I have attempted to remember every step of my journey (some times more successfully than others).  People may count you out in this life, BUT GOD…

 

Don’t let what you don’t know get ahead of what you do know

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Words to live by!  These are the words shared by a friend of ours whose daughter has been recently diagnosed with leukemia.  They are words she is holding on to daily.  And they are words we would all do well to embrace.  Unfortunately, life has a way of giving us many situations during our lives where, if we look too far in the future, we are totally overwhelmed. Your mind starts sprinting (or hopping) down every bunny trail it encounters.  What if this happens?  What if we receive this news?  What if we are told this is the next step?  What if we aren’t given a next step?  What if…?

I am as guilty of this as any one of you, but where does it get us?  Scared, paralyzed, unable to make reasonable decisions, unable to sleep.  Not a place that any of us want to find ourselves.

I am reminded of a conversation I had many years ago.  I was in the middle of a really contentious divorce that I saw no end to, was looking for a job (because of the divorce), had just moved from my home of 14 years (again, because of the divorce), and my father was dying and had asked that my sister and I help him die at home.  So, I was trying to handle all that was going on back home in Pennsylvania and staying for weeks at a time in New York, facing the daily stresses of losing a parent needing 24-hour care.  One of my parents’ pastors came to the house to visit with my dad and took the time out to talk to me about how all this was impacting me. I explained how totally overwhelmed I felt.  How I couldn’t see a way to handle all the things I saw on my horizon (both physically and emotionally).  He shared something I will never forget.

As background here, this man was dealing with his own scary unknown.  His son had been diagnosed with a disease that had no cure.  They knew exactly how he would die, the steps the disease would progress through, and what tomorrow would mean.  Yet they were functioning and seemingly thriving.  I asked how. And this is what he said.

We cling to a verse in the Bible: The steadfast love of the Lord never ceases, His mercies never come to an end; they are new every morning; great is your faithfulness. (Lamentations 3:22-23)

He went on to explain that God provides the mercies we need every morning for that day and that day alone.  If we try to live further in the future than that, we don’t have God’s mercies for that situation yet.  At first I thought, that’s easier said than done, and then I remembered what he was facing. If that was how he made it through the day, then it was worth trying.

So, when you face situations you just don’t know how you can handle, remember these ideas:

  • Don’t dream up worst case scenarios and run down every possible bunny trail. Don’t let what you don’t know get ahead of what you do know.  Put one foot in front of the other and deal with only what is right in front of you right now.
  • Remember that God will provide you the mercies you need today for today. And He will provide you the mercies you need tomorrow for tomorrow.  Try to live in today’s mercies.  Accept them, thank Him, and once again put one foot in front of the other.

 

Every day is a gift

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Not every day feels like a gift.  There are days where the to-do list runneth over, the kids are particularly wild, your significant other is getting on your last raw nerve, or you don’t have a significant other (although you have been praying for one FOREVER).  Or maybe your “doesn’t feel like a gift” focuses more on physical problems.  I have severe chemo induced peripheral neuropathy in my legs and feet, which causes daily, chronic pain even six plus years after treatment.  My pelvic bone (which was resected and now has very sharp edges) and surrounding tissues ache or hurt often.  My energy levels have never returned.  These issues seem to chant in my ears, “you call this is a gift?”

YES!  I am still alive!  Others are not that fortunate.  That was brought home so clearly last month when I learned a dear high school friend woke up one Sunday morning and thought it was a day like any other.  It was not.  He had a stroke and never got to kiss his sweet wife good night, as she went to bed that night in a bed that would never be the same.  Another high school friend, who has always lived a healthy and active life, suffered a heart attack last week while working out at the gym. Thankfully he survived, but not before having a stent placed in a totally clogged artery.  You see, every day that you wake up is a gift.

There is always something to be grateful for, even in the worst of days.  Sometimes you just have to look a little harder.  Do you have a friend you can call when you just need to talk?  Is the sun shining?  Is there a roof over your head?  Is your water safe to drink?  Is your heart still beating?  We all have so many things to be grateful for.  So, if today doesn’t feel like the gift you wish you were opening, look for three things you can be grateful for.  Just three.  It doesn’t matter how big or how small.  Come up with three.  And then really feel the gratitude.  Feel it in your heart and in your soul and say thank you.  Every day is truly a gift, even if it is wrapped a little differently than you might wish.  There are so many others who no longer have the chance to unwrap a new tomorrow.  As long as you are still breathing, there are reasons for gratitude and hope (and you all know how much I like hope).

 

Counseling Rocks!!!

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I don’t know about you, but I wasn’t raised in a family that encouraged counseling.  We were taught to be strong and self-sufficient.  Fear and failure were signs of weakness.  And most of all, we should take our struggles to God, not man. Now taking your struggles to God is a wonderful idea, but people sometimes also need trained counselors to deal with their issues (at least I do).  It took many years to arrive at this realization, but I am so glad arrive I did. The last three years have been a wonderful, painful, emotionally bare, learning time that I am so grateful for.  But all good things must come to an end.  My perfect counselor (perfect for me) retired at the end of April.  I didn’t see that coming.  I think I needed counseling to deal with the loss of my counselor, but alas, my counselor was retiring.  Now what do I do?

After many tears with both my counselor and husband, my husband uttered these wonderful words…

This chapter is ending, but the next chapter is only a page away.  You only have to turn the page.

So, turn the page I will.  Part of that page turning involves looking back on the many lessons I have learned during those years.  One of those lessons was the importance of listening to that still, small, God-given voice deep down inside.  My upbringing valued left brain, logical, fact-based decision making.  My career in finance and project management reinforced those values.  But when life deals you those unexpected, “never thought it would happen to me” cards, cards that can’t be reasoned or “logic’d” out, you have to open yourself to something more.  Without that possibility, life feels unmanageable.  So, I try to listen more.  I try to “feel” more.  I try to step out of that “only left brained” mentality and consider other possibilities. I try to live in the moment, instead of the past and future (this is still a major work in progress).  All of this is new to me, but I believe it is critically important for my well-being.

Another important lesson has to do with loving my inner child.  We all have past hurts that impact our decisions and reactions to this day. Hurts that may cause us to treat ourselves and others in a way that is less than ideal.  Hurts that have led us to some unhealthy coping mechanisms that have carried into our adult lives.  Our adult self needs to love that small child, thank them for all they did to get us to this point, and assure them that you can take it from here.  We are much better equipped to handle the situations we find ourselves in than that young, wounded child anyway.  Identifying this is the first step in healing that inner child in all of us.

I was recently reading the “Best Self Newsletter” and I came across this statement by Kristen Noel which says it better than I could…

Your Inner Child may have learned coping mechanisms that saved your life as a child, but those coping behaviors don’t have to rule your life as an adult.  Grace is found in moments of silence when you take the hand of your fearful inner child and you whisper, ‘Thank you. You’ve done an awesome job getting me here. I honor the bumps in the road that you have endured, but I’ve got this now. You needn’t be fearful anymore.’

Those are only two lessons I take away from the last three years of counseling.  There are far too many to count, but I can tell you that I am forever changed. So, if you need someone to talk to, go find a counselor that is your perfect fit.  Interview a bunch, if you need to (I kissed a few frogs before I found my Prince Charming).  Don’t settle for just anyone.  This relationship may be one of the most important relationships you will ever have.  You didn’t marry the first guy you ever dated, did you (maybe you did and you’re blissfully happy, but you get where I’m coming from)?  And I leave you with one more quote.  This time from my all-time favorite musical, “Wicked.”  It is for you, Mark, if you are reading this…

I’ve heard it said that people come into our lives for a reason, bringing something we must learn.  And we are led to those who help us most to grow, if we let them.  And we help them in return.  Well, I don’t know if I believe that’s true, but I know I’m who I am today because I knew you.  I do believe I have been changed for the better.  Because I knew you… because I knew you… I have been changed for good.

 

Let go of worry

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Are you someone who can take life as it comes, ride any wave that comes your way with ease, shrug off life’s uncertainties? No, me neither.  I tend to think everything to death, chase down every bunny trail, and try to plan for whatever may come.  That leads to a lot of worry.  What could happen next, how would we handle it, am I prepared?  That tendency became reinforced during my cancer battle. After all, I was fighting for my life.  I had to anticipate any and all things that may kill me, right?  Living like that is no fun, nor is it really living.  Every day is such a blessing.  So many others will not have that opportunity.

I have been following two sweet little children who are fighting different types of childhood cancer.  They were both diagnosed at age two.  Numerous surgeries and rounds of chemotherapy later, both of them had relapses and one has passed.  The other seems to be out of options, as it has metastasized to his lungs and bones. It just doesn’t seem fair!  Their lives were just beginning.

So, in a world where so many unthinkable things happen on a daily basis, how can you worry less?  I am not unrealistic enough to think we would not worry at all, but that is definitely my goal.  One of my favorite quotes by Corrie tenBoom, a Nazi concentration camp survivor, says

Worrying is carrying tomorrow’s load with today’s strength–carrying two days at once. It is moving into tomorrow ahead of time. Worrying doesn’t empty tomorrow of its sorrow, it empties today of its strength.

What wise words, from someone who had every reason to worry.  Few of us will ever experience the level of emotional and physical distress that she did, and yet God gave her a spirit of peace in the midst of it.  I think that’s the lesson for me.  Life will provide many opportunities for worry, but God has promised to never leave us during those times.  He never promised we wouldn’t have to walk through them or that it would be easy, but He promised we wouldn’t have to do it alone.  In that promise is great hope.  Let’s face it, today needs all the strength it can get, so let’s send worry packing!

 

Health is a balancing act

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I used to think of health as how my body felt physically.  If I didn’t have the sniffles, a headache, joint pain, or (God forbid) a chronic disease, I was healthy.  These last few years have taught me that health is so much more than that.  True health is comprised of many different factors.  The other day I was listening to a TED talk by Dr. Lissa Rankin, where she was discussing something called “The Whole Health Cairn Model.”  She explained that to be truly healthy numerous areas of your life must be in balance and that your physical health was like the top rock in a rock cairn.  If those other areas are not shored up, your health could not rest securely in its place.

So, what are those areas?  It begins with your inner pilot light.  That still, small voice in the deepest part of your being.  Some call it your gut or intuition.  If you aren’t taking the time to be still and listen to what your intuition knows better than your thinking brain ever could, you are missing the foundation of true health.  In a world of constant noise, rushing, and data overload it is tough to find that time to be still, but if you don’t make that time you will miss out on all that your life can be.  Then there are the many other areas that make up your life: relationships, work/life purpose, spirituality, creativity, sexuality, environment, money, and mental health.  All of those areas contribute to the state of your physical health.  If any of them are out of balance (and who doesn’t have one or more of them out of balance at any given time?), your physical health is at risk. That really got me thinking about my ongoing quest for what I think of as good health.  I spend so much effort on what I eat, the supplements I take, the positive affirmations I state, the alternative treatments I pursue, but do I put that same level of effort into my creativity or life purpose?

She went on to discuss the importance of including some type of love, activities that bring you pleasure, acts of service to others, and gratitude for all you have already been given into your life to support your whole health cairn. This all seems like a lot to juggle, but I took away from her talk that whole health is so much more than what I thought of as health.  That life is made up of so many different areas and they all contribute to or take away from our whole health.  And then she said something that made me stop and back up her talk to hear it again.

When life falls apart you either grow or you grow a tumor.

What!?!? I don’t know about you, but that caught me up short.  All of the periods in my life where areas in my health cairn were falling apart, I had a choice.  I could resist, hunker down, and try desperately to hang onto to how things were, or I could surrender to something greater than myself and grow.  Given the fact that I grew a tumor, I think you know which one I usually chose.  So now that I know better I will try to do better.  In those “falling apart” times I will now try to choose surrender and growth. How is your whole health cairn doing? Is it strong and balanced or is it leaning or in a pile?  Pay some attention to what areas are weakest and shore them up.  Grow from the hardest things you are facing today.  Learn from my mistakes.  Whole health is precious and definitely worth the work!

 

Miraculous find

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I often get the question, “How did they find your cancer?”  That simple question does not have a simple answer. You see, there were no symptoms. I thought I had a bladder infection and called my primary care physician for an antibiotic.  She was on vacation and the doctor filling in for her thought it would be a good idea for me to see a Urologist.  I didn’t understand why because I was not prone to bladder infections, but the idea of just going to Urgent Care for the prescription never crossed my mind (and that is something that would have always crossed my mind).  Begrudgingly I scheduled an appointment with the recommended Urologist because I needed an antibiotic.  He put me through the torture chamber of testing that only Urologists do, said he thought I was right and probably had a bladder infection (I know, right?), but wanted me to go for a CT of my kidneys to rule out kidney stones.  Now if you know me at all you know I drink more water than anyone you have ever met, so the odds I had kidney stones were slim to none.  I wasn’t experiencing any pain, but this is what he wanted done before he would give me an antibiotic.  Again, why didn’t I just go to Urgent Care?

The next day I went in for my pelvic CT.  I was so glad they had a cancelation because I really needed that antibiotic.  As I was driving home from the scan, my cell phone rang.  It was my Urologist’s office asking me to stop by on my way home.  Yay, I was finally going to get my prescription!  When I arrived, the receptionist looked anxious and immediately took me back to the doctor’s office.  She assured me he would be right in, she just needed to pull him out of the examination room.  I thought it was odd that he was that willing to personally hand me my much-needed prescription, but as long as I was getting it I didn’t care.  When he entered the room, he looked concerned.  He told me he had good news and he had bad news.  The good news was I didn’t have kidney stones and he handed me my antibiotic prescription.  The bad news was I had a hole in my pelvic bone and needed to see my Oncologist right away!  My first thought was “what Oncologist?”  He proceeded to tell me it appeared my cancer had returned and metastasized to my pelvic bone.  My head was spinning.  I had never had cancer.  I didn’t have an Oncologist.  What is he talking about?  When I explained all this to him he immediately called my primary care physician (who was back from vacation), spoke to her, and then called over to the local hospital’s Oncology practice to schedule me ASAP.

A few days later I found myself in an Oncologist’s office.  When she entered she introduced herself and then said “I have reviewed your scan and think you have stage 4 multiple myeloma and probably won’t see Christmas.” What is it with these doctors?!?  Did I mention I was alone in her office when she delivered this news?  All I could think to say is “Do I look like someone who has stage 4 multiple myeloma?” She said no, but she couldn’t imagine what else it could be.  She scheduled me for a multitude of tests.

Each test came back normal.  When I would heave a sigh of relief and say “that’s great!” she would respond “no, no it’s not.”  She wanted to know what caused the hole and I was just glad all the tests came back normal. This cat and mouse game continued for 2 months.  There were bone scans, CTs, blood tests, all coming back normal.  Next was the CT guided needle biopsy into my pelvic bone. Not fun this time either.  The biopsy came back as healthy tissue.  I thought this nightmare was behind me. Then she told me I had to have an open incision biopsy at a hospital 1 ½ – 2 hours away.  I was done.  I had completed every test and scan she recommended.  It was about this time that I told her that when you’re a carpenter and the only tool you have is a hammer, everything looks like a nail.  But God had other plans.  He wasn’t going to let me come this far and not cross the finish line. She then offered to take my case to “The Tumor Board.”  I didn’t even know there was such a thing, but I thought they would think she had done enough and maybe I was just born with a misshaped pelvic bone.  After all, I had never had a CT of my pelvic bone before. I agreed.  They unanimously agreed with her.  The appointment with the Orthopedic Oncological Surgeon (who just “happened” to be ranked #1 in the country at the time) was scheduled.

When I met with him he also thought it was not cancer.  He ordered an MRI with contrast just to make sure. That was about the only test they hadn’t done yet.  When the results came back they were inconclusive, so he called the Oncologist to recommend watching it.  She would not agree.  She really felt it was cancer.  He talked with me and said he did not think it was cancer, but had to pursue it further, if she would not sign off on his recommendation.  To say I was not happy with that Oncologist was an understatement. It wasn’t that I was in denial, it was that I thought I had had enough tests to determine there was no cancer. We decided to go through with the open incision biopsy to put this to rest once and for all.  And as I wrote about in an earlier blog, it did end up being a really aggressive, really rare form of bone cancer (Undifferentiated Pleomorphic Sarcoma).

When I reflect over all the details of this miraculous find I can’t help but be amazed at how God orchestrated all this.  First of all, He allowed it to be found before there were symptoms (and it would be too late).  For some reason it never occurred to me that I should just go to Urgent Care and get an antibiotic prescription (which would normally be my first thought in this situation).  I also didn’t mention that the bladder infection that drove me to the doctor in the first place ended up testing negative for infection after all and the symptoms stopped as soon as the CT found the hole in my pelvic bone.  Then there was the Oncologist who I not so affectionately dubbed “Dr. Pitbull.”  She continued to dig, even when all the signs were that this was nothing.  She even stood up to a much more experienced physician, whose specialty was bone cancer, when he recommended taking a step back and just watching it.  Another thing that happened, after the biopsy determined it was cancer, was that I knew I couldn’t go through all this alone in Pennsylvania, where I was living.  It “just so happens” the #2 Orthopedic Oncological Surgeon was in New York, where my fiancé lived, and the first surgeon was friends with him and got me in within a week of the biopsy results.  And God had brought my fiancé and I back together just months before all this started.  There is no doubt that I wouldn’t have lived through the treatment without the dedicated and loving 24/7 care he provided.  Was any of this a coincidence?  I don’t think so.  Did any of this surprise God?  No, but it sure did surprise me.  When the times came that didn’t seem anything but hopeless over the next year+, I reflected on all the details associated with my miraculous find and knew God was with me.  I still think back on all that transpired when I find myself becoming fearful of the future and choose to believe God allowed me to survive for some greater purpose. I am still here and so are you. We all have a purpose and until my purpose is completed I will continue to share my story of hope with those I cross paths.  It’s not that I feel hopeful each and every day, but I do know God is with me.  He has shown that time and time again throughout this journey.  There is great hope in that!

 

Thoughts can change biology

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Have you ever noticed that thinking a certain thought can change your day? You wake up and, for a brief moment, may forget that diagnosis.  Or maybe you forget that your marriage is over or your job has been eliminated. And then it all comes rushing back and you start to feel nauseous and shaky.  Your head starts throbbing and your palms start sweating.  Your thoughts have directly impacted your biology. Study after study is now proving the idea that you can think yourself sick, as well as well.  You can change your gene expression by assuming a positive or negative attitude about your circumstances.  If that is true, why don’t doctors encourage each and every patient to practice positive visualization?  It costs nothing, has no associated risks, and could greatly improve a prognosis.

I once heard a speaker say, “The day I got my diagnosis I died to who I was. But I haven’t yet been reborn to who I am going to become.”  She had a sense of continuity even in the way that she spoke.  She was telling a story that told me this woman expects to live. What we believe and tell our minds can greatly impact our cellular biology.  Expect a positive outcome.  Think about a positive outcome (in great detail).  Dream of your life with this positive outcome.  I’m not talking about becoming a Pollyanna, I’m talking about really seeing your life healthy and whole (or at least as I say, “remarkably better”).  Feel the feelings associated with that reality.  Your brain can’t tell the difference between what has already happened and what you have imagined and felt if you picture it with enough detail and emotion.  It’s not easy, especially when you are so sick or scared, but it is a skill to be practiced.  It gets easier the more consistently you practice it.  What have you got to lose?  Time is going to pass either way.  You can sit back and wait for healing or improvement or you can imagine it. You can picture it in all its luscious, joyful, hopeful detail.  See yourself able to do and experience all the things you have only dreamed of.  At the very least you will notice improvements in your emotions and hope.  At most you will notice miraculous improvements to your life.  Let’s give it a try together!

 

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.