Tag: Sarcoma

You may not always feel thankful during the holidays

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It was six years ago and I was in the middle of 18 weeks of really tough chemotherapy.  Earlier that year I had reconnected with my first love and the love of my life.  I thought my happy ending was finally falling into place. And then, two months after getting engaged, I was diagnosed with a very rare form of bone cancer (Undifferentiated Pleomorphic Sarcoma).  The prognosis wasn’t very promising.  So after hurriedly scheduled surgery (a pelvic resection), the chemotherapy began. My hair began falling out the day after Thanksgiving, so I wasn’t feeling particularly thankful about that. By Christmas I was barely able to keep food down and got out of bed mainly for the numerous doctor’s appointments on my otherwise bare calendar.  As my friends were shopping for gifts, decorating their homes, and attending numerous holiday parties, I was lying in bed, trying to make it through another day.

Yet, during that time, there were many special Christmas memories forming.  I was unable to handle many smells, so my fiancé borrowed an artificial tree and decorated it as a surprise for me.  After he finished, he helped me downstairs to see his handiwork.  I was so grateful.  On Christmas Eve, he joined me on my hospital bed and we tracked Santa on the NORAD website until long after midnight, and then he kissed me a Merry Christmas.  He wanted to make sure I made as many Christmas memories as my health would allow.

I was not feeling at all thankful for the cancer or chemotherapy fallout, but I could give thanks for the special memories my wonderful fiancé created for me.  It was then I realized the huge difference between feeling thankful and giving thanks.  Joni Eareckson Tada describes these thoughts perfectly.

As a matter of fact, God isn’t asking you to be thankful. He’s asking you to give thanks. There’s a big difference. One response involves emotions, the other your choices, your decisions about a situation, your intent, your step of faith.

So, as you move through this holiday season, even if it is not everything you hoped it would be, remember to Give Thanks.  Notice that smile on a stranger’s face, the door held for you as you enter a building, the kind word from a friend, the helping hand extended by your family member.  The more examples you notice this holiday season the more likely you are to look back on this Christmas six years from now and realize that giving thanks, for the small and not so small things, creates some of your fondest Christmas memories.

 

No news is good news

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At least that’s what my surgeon says.  You see, he will not call me if my scans are clear, only if there is a problem (I would bet he has never waited anxiously for test results or he would be more compassionate).  My husband describes that waiting period as “a slowly fading sense of dread.”  So, the endpoint is a phone call from my surgeon (bad news) or when the results are finally posted to our hospital’s online portal (good news).  That posting occurred yesterday.  There is no indication of recurrence on the x-rays or MRI (the actual words were “No evidence of residual or recurrent disease”).  Sweeter words were never spoken (or read)!!!

Now I move to annual scans, a milestone I have been looking forward to for six years.  I can’t even imagine being able to live for an entire year without periodic scans hanging over my head, but I am really looking forward to finding out how that feels. Maybe I will plan a vacation for 11 months in the future.  Wow, what a concept.  Thank you so much for your kind words and prayers, as I approached these latest tests. They were felt and carried me through this waiting period.  My blog tribe is the best in the world and I never take your support for granted. Celebratory hugs all around!

 

It’s that time again

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You would think it would get easier, but it doesn’t seem to work out that way.  My next scans are scheduled later this week.  Anxiety abounds.  I tell myself that the greatest risk of recurrence was in the first 2-3 years.  I tell myself that these are my 6 year scans and I have been clear to date.  And then I remember ALL the stories people have shared with me about friends and relatives who made it to 5 years, got the all clear, and then it came back everywhere and they died.  Yes, you can’t imagine how many of those stories I have been told.  I never understand why people think that is helpful.

I also remember what happened last year, at my 5 year scans.  I don’t know how many of you read all about that in last year’s blog posts (feel free to look back at them, if you want more of the details), but the short version is my surgeon read my scans and said they looked clear, only to call me 3 days later and say the Radiologist saw something and he is “very concerned.”  When your cancer surgeon tells you he is “very concerned,” you become VERY CONCERNED!  So, although it ended up being a false alarm, the PTSD is real.  My body experienced emotions and trauma that were worse than during the initial diagnosis. You see, when I received my original cancer diagnosis I knew it would be bad, but I had NO idea how bad.  Now I know and that makes the prospect of a recurrence all the more excruciating.

So, I approach these scans with anxiety, logic, dread, hope, and lots of prayer.  I tend to beat myself up over the anxiety and dread parts.  After all, I have made it this far, although statistics lead us to believe I wouldn’t.  I also feel like somewhat of a fraud because I started a blog called Hopeful Survivor.  I am hopeful, just not every second of every day.  So, I write this in the spirit of authenticity and with the hope that it encourages others who are afraid of what the future might hold.  Hope is a powerful emotion and one that is crucial for creating a life worth living.  As I approach this week’s scans and the results of those scans, I acknowledge my emotions.  I honor what I am feeling.  And I move forward with hope.  Prayers and positive energy gratefully accepted.

 

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!

 

Do you want to live?

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No one actually asked me that and yet it is critically important to know the answer.  I think most of us would instinctually respond with a yes, but do you really want to live?  Life is hard.  Marriages are tough or fail.  Jobs are stressful or are lost.  Kids can be heart breaking.  Depression is real.  Treatment is sometimes more than a person can bear.  Given all that, do you really want to live?

Why?  It is just as important to answer that question.  Do you have a reason or reasons to live?  Not just because it is expected of you, but do you have a purpose or goal?  Are you clear on it?  Do you visualize yourself at your child’s graduation?  Can you see your daughter walking down the aisle?  Can you feel your grandson in your arms?  Do you see your life on the other side of your diagnosis? If not, I repeat, do you want to live?  It is critically important that you be crystal clear on your “Why.”

When I was diagnosed I had just finalized a contentious 3+ year divorce.  During that time, I was not working (I had stopped while still married), it was during the 2007/2008 high unemployment period and I wasn’t finding any opportunities no matter how hard I tried, money concerns were ever present, I moved 3 times in 6 months, my father got pneumonia and died, and my responsibilities for my ailing mother greatly increased.  Prior to my divorce I was in a 14 year abusive marriage.  Add all that up and you can see why my immune system was unable to stay on top of any rogue cancer cell formations.  So, did I really want to live?

My answer was a resounding YES!  As I have previously shared, my first love and I had just recently reconnected.  We were so thankful to have found each other again after 35 years apart. We were making plans and dreaming dreams.  Life and love were finally real parts of our lives.  More than ever before, I wanted to live.  Do I think that had much of an impact on my survival?  Absolutely!  That and God.  It was not a coincidence that we had found each other again after all that time.  That didn’t mean it was easy, it was not.  Many people thought I wouldn’t survive the cancer, no less the treatment, but I did.  And I’m still here.

I encourage each and every one of you to get crystal clear on your “Why.”  Whether you are facing a health crisis or any other type of crisis, knowing your “Why” could save your life.  So, when life gets hard, and it will get hard, ask yourself if you want to live and then get clear on your “Whys.”  Those answers could make all the difference.

 

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!

 

Doctors only know what they know

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That may seem obvious, but it is important to understand and embrace.  What I mean by that is they know what they know until they know something different. The dogma for the longest time was that adult brains couldn’t generate any new brain cells or connections. You just use what you were born with.  Now neuroplasticity (the ability of the brain to form and reorganize synaptic connections, especially in response to learning or experience or following injury) is a generally accepted concept in the medical community. It also frustrates me to no end when I hear about a doctor telling a patient that there is no hope.  They are going to die or their health issue will never get any better.  Says who? I understand that their medical education, and maybe even their experience, leads them to believe that. But what doctors are sure of one day may vary greatly from what they know a short time later.  Discoveries and new treatments are coming every day.  And what about God?

I have many personal examples in my own life where doctors, or experts in their fields, said one thing and I showed them something entirely different.  Let’s begin at the very beginning.  While I was still in utero the doctors told my mother I was going to be a boy (because of my heartrate) and that there was a good chance I would be born with Down Syndrome (because of my mother’s age).  Neither is true.  During my birth there came a point where the doctors no longer believed they could save both my mother and me (I was breech, the labor had gone on for many hours, and I was too far along to perform a C-section).  They visited my father, in the waiting room, and asked him which one he wanted them to save. He chose my mother, but we both made it through alive and well.

Fast forward to much later in my life.  I was driving to work on a wet and windy road, one winter day, and hit a patch of black ice at 45-50 mph.  My SUV hit a utility pole head on.  The engine was pushed all the way to the dashboard.  I was in shock and sore but was able to get out of the vehicle.  When the EMTs arrived, they looked into the vehicle and then asked me what happened to the driver.  When I said I was the driver they couldn’t believe I was conscious (at best) or alive.  After being ambulanced to the ER and thoroughly checked out, a friend took me to the lot where my car had been towed.  The older gentleman who owned the lot approached us with a very somber look on his face and said “may I ask if the driver survived the crash?”  When I replied I was the driver he said “lady, you have an angel on your shoulder.”  I believe he was right.

And then there was the cancer journey.  I already described many of the things that happened in earlier posts, but some bear repeating in relation to this topic.  When I visited my first Oncologist, she said she thought I had stage 4 multiple myeloma and probably wouldn’t see Christmas.  I did not have multiple myeloma and that was in 2012, six Christmases ago.  When the biopsy determined I had Undifferentiated Pleomorphic Sarcoma, I was told it was a very rare and aggressive type of cancer and there really was not enough data to determine a survival rate, but it wasn’t high.  In fact, the likelihood of recurrence was greatest in the first 2-3 years.  Although it hasn’t been an easy journey, I’m still here 5 ½ years later with no recurrence.

Those are only a few of many examples I could tell you about, but I think you get my point.  Don’t let the doctors, or other so-called “experts,” steal your hope.  They only know what they know.  They certainly didn’t know me and they didn’t know my God.  I believe I will be here until God calls me home and only He knows when that will be.  So, when a well-meaning “expert” tells you something about you and your life, smile politely and remember they only know what they know.  Tomorrow they may know something totally different.  And never, ever let them steal your hope!!

 

And the results are in…

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This latest round of scans was clear!  The exact terminology is “no evidence of recurrence.”  I couldn’t be more pleased or more thankful.  And I also found out what “the foreseeable future” means.  After 2 rounds of 3 month scans, the doctor said “see you in 6 months.”  I guess that means “the foreseeable future” is 6 months long.  Who knew!  I am so relieved to move back to 6 month intervals and look forward to clean scans in October and moving to once a year!!  I can hardly believe it.  Last October, the time of my scare, he had moved me to annual scans.  I was thrilled and so relieved.  Then the phone call came and it signaled a biopsy and 3 month scans once again.  I can’t even imagine what annual scans would feel like, but I am looking forward to finding out.

So, life picks up right where it left off.  I always find it interesting that scan day can lead to 1 of 2 very different experiences. Either it is a few hours (and a few days waiting for results) out of an otherwise normal week or life as you know it completely changes.  I describe that as throwing my life into a blender.  I think life, in general, is a lot like that.  You get in your car, to drive to work, and a car accident alters your life forever.  The phone rings in the middle of the night, telling you news you hoped to never hear, and life is never the same.  Your spouse comes home one day and tells you he wants a divorce.  Enter the “blender phenomenon.”  I have learned many lessons from that blender.  One is that I am much stronger than I ever thought I was.  Strength is forged in adversity, but if you recognize and embrace that strength today the lessons of adversity may not need to pay you a visit as often.  Another lesson is to never take today for granted, because tomorrow is not guaranteed. I have spent far too many todays wishing, praying, or working toward a different tomorrow.  I am finally beginning to embrace today as the gift it is and leave tomorrow to tomorrow.  The key word there is “beginning.”  I am such a work in progress.  So today I encourage each of you to embrace those lessons in your lives.  Do yourself a big favor and embrace them without having to experience the dreaded “blender phenomenon.”  Your soul will thank you!