Tag: biopsy

Back in the fight

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It began just like any other day.  It was two weeks before Christmas, I had errands to run, and my annual mammogram and ultrasound scheduled.  And then it happened, “there is an abnormality on your ultrasound.”  “Most likely a glandular mass.”  “Recommend a biopsy just to be safe.”  Life went into slow motion.  What if it’s cancer again?  I can’t do this again!  I scheduled the biopsy for the following week.  The day arrived and the physician agreed with the original radiologist that it looked like a glandular mass (not a concern).  I would have the pathology in two days.  Those two days moved like molasses in winter.  And then the call from my GYN, it was Breast Cancer.  Cancer, a word I NEVER wanted to hear again in my life.

I saw the surgeon the week of Christmas and was scheduled for surgery the week between Christmas and New Year.  What a holiday season it was.  What-ifs weighed heavy on my mind at all times, even though I knew focusing on it every second wouldn’t change anything.  The day of surgery arrived.  First, I was sent for a sentinel lymph node injection and locating, then on to a needle localization (a wire is inserted into the mass using imaging guidance, that was fun).  Finally, it was time for surgery.  I was so thankful I was able to do all this as an outpatient, especially given the current Covid situation.  Now to start the surgery recovery and await the pathology.  The lab was really backed up with two holidays in the previous two weeks and the understaffing because of the pandemic.  What should have been two to three days dragged on to nine, long days.  When it finally came back this past week the results were favorable (as favorable as a cancer can be).  I will see the surgeon for follow-up this coming week and get more information then.

Then, I’m off to the oncologist.  I am hoping the next steps won’t include chemotherapy!  There’s that work, Hope.  It seems to appear more in my life in the last few years than ever before.  Hope is so important, but sometimes so elusive. There have been so many times in my cancer battles that hope felt all but lost.  Yet here I am!  I am left wondering what the purpose is in all these diagnoses, but I choose to believe there is one.

So, I am firmly back in the fight again.  A place I never wanted to be once, no less twice.  Questioning why my immune system seems to not be able to contain rogue cancer cells before they become something more.  I have changed my eating choices to the most inhospitable for cancer growth (whole food, plant based), am at a healthy weight (most of the time), work on my stress management (not always too successfully, if I am being totally honest), but here I am.  So I ask you, my Hopeful Survivor friends, to send well wishes and/or prayers my way during these next few months.  I think community is so important and I consider each of you mine.  And never forget, as you face your own road you never wanted to travel, that there is always hope!  It is not only my blog byline, but a constant theme in my life.  Wishing you all a healthy and peaceful new year and sending so much love your way!

 

Scanxiety is real

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Do you know what scanxiety is?  If not, you are very lucky.  Scanxiety is the crippling anxiety before undergoing or waiting for the results from cancer detecting scans.  Those of us much too familiar with this event can attest to its existence.

Much has happened since I last discussed my scheduled scans.  No recurrence, thank God (seven years clear!), but anxious moments all the same.  My annual scan on a Friday in October was a cause of much stress.  It was the first time I had gone a full year between scans.  It was wonderful that my doctor felt I had gotten to that point, but my mind wondered what if there was something and it had a full year to grow?  As the day approached my anxiety grew.  I had an MRI and five x-rays and then proceeded to my appointment.  The doctor took a look at the scans, said he didn’t notice anything new (I had been told that at my five year scans and he called me three days later saying I needed to come in for a biopsy, that the Radiologist thought he saw “something”), but that they had to be read by the Radiologist to be sure.  Later than afternoon he called to say I was all set and I didn’t have to come back in for another year.  YAY!!  And then I received a call at 7:30 that night (I was at a concert) telling me the Radiologist noted something and they needed to circle back with him on Monday.  My mind immediately went to a potentially negative outcome.

That weekend was horrible.  I tried to keep myself busy, hoping to not think about it.  On Saturday my husband and I went to an event at the NYS Fairgrounds to pass the time.  That’s when I experienced what I now know was my first panic attack.  I thought I was having a heart attack.  My pulse was 126, I was sweating, shaking, couldn’t catch my breath, and felt like an elephant was sitting on my chest.  Off to Urgent Care we went.  Long story short, they recommended I go to the ER to make sure it wasn’t a heart attack, but they could tell me it sounded like a panic attack.  I said no thanks to the ER, signed their release, and headed home to take a Xanax and go to bed.  Sunday I felt like a wet noodle, no energy and pretty nervous overall.  The following day I received a call that the scans were indeed fine.  Such a relief, but so much anxiety for nothing.  I’m still not sure what was gained by calling me that Friday night, when nothing could be done before Monday morning but worry.  All these details to say scanxiety is real.

I’m not sure why it is, but I seem to get more anxious as time goes on.  My head knows the risk of recurrence decreases with each passing year, but my emotions don’t seem to get the message.  It may be because I was in shock the first few years and just put one foot in front of the other to make it through the day.  I was scanned every three months and measured my life in those short increments.  Now that the scans are annual and I am regaining strength and some sort of quality of life (good, but definitely different), I feel like I have more to lose.  Before my life was consumed with all things cancer treatment and recovery.  Now I go out with friends, take vacations with my husband, and dream of a future.  More to lose seems to equal more anxiety around the scans.

So, if you are a member of the Cancer Club, I get it.  No matter how long it has been since your original diagnosis, scans are still really scary.  But knowing others are experiencing the same feelings seems to be some sort of comfort.  Never forget that sharing a heavy burden lightens the load.  There is strength in community, make sure you find one.  And please reach out to me if there is anything I can do.  We are all in this together.

 

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!

 

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!

 

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.

 

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.

 

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!