Tag: surgery

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…

 

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!

 

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.

 

Broken into Beautiful

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

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

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

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

 

Let’s rejoin our program, already in progress – Surgery and epidurals and headaches, oh my!

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When I started this blog I had planned to share some of my cancer journey experiences with you. Experiences, that in hindsight, showed how hope was possible, even in seemingly hopeless situations. I had barely scratched the surface of my story when current events came crashing in (enter unexpected scan results and a biopsy). When you’re a cancer survivor, unexpected diversions become a regular, and not always welcome, part of your new life. Now that I have thankfully received good news on my biopsy (thanks again for all your positive thoughts and prayers), I want to rejoin my story where we left off -sitting in the surgeon’s office, hearing about my scheduled pelvic resection because of a rare bone cancer. If you want to refresh your memory on exactly what had happened to date, feel free to re-read my first 3 blog posts. Okay, here we go…

The morning of surgery my fiancé, sister, and I arrived at the hospital bright and early. Actually it may have been dark and early. I don’t remember. They prepped me and took me back. At this point let me mention that this was being done at a teaching hospital, so Residents were always present. They decided to start me off with an epidural, to help with pain management after the surgery. After all they were hacking out a section of my pelvic bone! This ended up being the worst decision I allowed that day. You see, a Resident was the one trying to place the epidural and she missed her target twice. Instead she drew spinal fluid both times. After the second time the attending physician said “lay her down” and that’s the last thing I remember until the recovery room. The reason I say this was the worst decision I allowed is because of the severe spinal headaches I had from the leaked spinal fluid, which changed the fluid pressure around the brain and spinal cord. For almost 2 weeks I could not lie flat nor could I stop vomiting for days. Like the pelvic resection was not enough to deal with. But I did survive and 6 days later I headed home to recuperate. It was never far from my mind that this, although a big enough deal by itself, was only step 1 of my battle. I was determined, but if I’m being totally honest I don’t know that I was hopeful. The future seemed impossible to imagine. I tried to keep my eyes on the only one who not only knew what the future held, but held the future. I clung to the truth that God’s mercies are new every morning. He promised to never leave my side. That was a glimmer of much needed hope.

 

You want to do what?

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After my biopsy came back positive I met with my Orthopedic Oncological Surgeon to determine next steps. What a day that was. I thought I would meet with him, he would review all the many tests I had over the previous 2 ½ months and he’d give me his opinion. No, I had to REPEAT all the tests, with a few more thrown in for good measure, because anything older than a few weeks was not current enough information on which to base a plan of attack. So I was cat scanned, bone scanned, x-rayed, radioactive dye injected, mri’d within an inch of my life and then I found myself back in his office. The doctor came in, stern look on his face, and began. “Just so you understand the seriousness of this situation, this surgery is not a little league game, it’s not a high school game, it’s not a college game, it’s an NFL game. But it is NOT the Superbowl.” I didn’t know whether to cry or be relieved. I suppose his point was that this was really serious, but it could be worse. The hole in my pelvic bone had doubled in those 2 ½ months. Very aggressive. I was staged at 2A. He explained that he would go in and resect my pelvic bone, removing approximately a 3 inch by 3 inch section. I wondered if I would live and if so if I would ever walk again, but I remained silent with tears streaming down my face. There were no words at a time like that. Surgery was scheduled for the following week…