Tag: chemotherapy

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…

 

Just Ask Him

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Last night I found myself watching one of my husband’s favorite television shows with him, “Star Trek: The Next Generation.”  The episode we watched involved a god-like entity that controlled the destiny of a planet they visited.  One of their crew members unknowingly violated a law on that planet and was sentenced to death.  Captain Picard was wrestling with the decision of whether to let that one crew member be killed and leaving the planet with no additional casualties or forcefully removing him (saving his life) and risking that the god-like entity might destroy the entire Enterprise and its crew.  I found myself yelling at the tv “why don’t you just ask him?!?”  I wasn’t sure the entity would answer, but he didn’t even ask.  Picard was instead trying to guess what logic and thought process the entity would employ.  After much stress and unnecessary energy spent, he removed the crew member from the planet and waited.  The entity did not react.  Picard was then trying to determine his next course of action and decided to (finally!) ask the entity if he would allow it.  The entity immediately responded.  How many times in our lives do we spend so much unnecessary energy on situations that could be resolved if we just asked the question?

The questions differ, but the idea remains the same.  You are struggling trying to handle all that life is throwing at you that day.  You can’t understand why your spouse who “claims” to love you, doesn’t jump in and help you.  Did you ask?  Do they even know you’re struggling (you are looking like a superwoman on the outside)?

You feel that there is a strain in your relationship with your best friend.  You are “sure” you must have done something that offended her and you wrack your brain reviewing all your interactions over the last week, trying to figure out what it was.  You concoct an elaborate story in your mind of what you said and how she interpreted it incorrectly, but do you ask her?  Maybe she’s dealing with something totally unrelated that is causing her stress and she could really use your help, but she doesn’t ask either.  So now you are both struggling when it could be eased by just asking for some support.

As I was lying in bed last night and reviewing how my husband thinks Captain Picard is the best Enterprise captain because he is so smart and controlled (yes, I was actually thinking about this in bed last night) and thinking he actually wasn’t that smart because he could have caused himself so much less grief if he had just asked, I was caught up short.  How many times have I done the exact same thing?  How many times could I have spared myself anxiety, upset, and stress if I had just asked for what I wanted?  I reviewed my current struggles to determine if anything came to mind where I should ask.  My thoughts were immediately drawn to the constant pain I have in my feet and legs because of my chemo induced peripheral neuropathy.  I try to keep a positive attitude about my nerves’ ability to heal (even though the Neurologist specializing in neuropathy in our area told me seven years ago that it would NEVER get any better).  I eat a healthy, whole food plant based, organic diet and work on my mental and emotional health regularly, but am still in chronic pain.  God knows all I’ve been through over the last eight years.  He knows how I want so badly for my nerves to heal.  But how often do I actually ask Him to heal them?  I sometimes slip it into my other prayers, but how often do I set aside some time just to pour my heart out to Him on this one topic?  Not often enough.

What areas in your life would benefit from you just asking for what you need?  Just asking for what you want?  Just asking for your heart’s deepest desire?  I’m not saying all your problems will magically disappear when you do, but it might be worth finding out.  Like Captain Picard, you will never know until you try.  Just ask!

 

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).

 

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!

 

High dose Cisplatin and Adriamycin

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Five weeks after surgery I met with my Oncologist and the recommended course of treatment was high dose Cisplatin and Adriamycin, four days in a row, every 3 weeks, for 6 cycles. And then the words that sent a chill down my spine. “We will take you as close to death as we can every cycle and hopefully bring you back.” REALLY?!? I realize this is a really rare, really aggressive form of bone cancer with not enough of a sample size to determine an approved protocol, but really? I had only two choices, do it with determination and fight or pass on it all together. I determined that if the cancer came back and I had not done it I would always wonder if that would have made the difference. So chemo it would be. What followed was 18 weeks of what Melissa Etheridge described as “descending into hell.” During that time my bloodwork was so dire that I received Neulasta injections each cycle to bring my white blood cell count up from almost 0 (once it was measured as 0.1) and 10 blood transfusions of red blood cells and platelets. Three of those transfusions were on my wedding day. I went in for what was supposed to be routine bloodwork after cycle 4 and they immediately sent me to the hospital for 3 blood transfusions (2 platelets and 1 red cells). Good thing we were only planning to have 6 guests (no immune system, no guests) at our home for the service and my husband’s sister was the minister. My point is, no matter how horrific it was (and it was horrific), I’m still here! Again, don’t let the people in white coats steal your hope. If 1 person has survived it, it is possible and I have survived it. Always choose hope!!