Tag: radiation

And they thought it wasn’t possible

/ 3 Comments

“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…

 

Radiation, but no chemo!

/ 6 Comments

Consultation after consultation.  More doctors’ appointments than I could keep straight.  I just looked back through my calendar and this is the list of who I saw just in January: Surgeon, Oncologist, Palliative Care, Dietician, Cancer Rehab, Radiation Oncologist, and Social Worker.  Thank goodness for good insurance.  The consensus was no chemotherapy was warranted (thank God), but daily whole breast radiation with a boost to the tumor site was recommended.  That began in February and completed in March.  April is mainly dedicated to recovery from the radiation treatment, physical therapy/rehab, my covid vaccines, and the start of daily maintenance meds (an aromatase inhibitor to suppress my estrogen production) for the next five years.  Please pray the side effects from that medication are minimal.  I am thankful for modern medical advancements, but am tired, both physically and mentally.

That was a long way to say I am well on the road to recovery and thank each one of you for your kind words, thoughts, and prayers over these last few months!  A cancer diagnosis is something no one ever wants, but far too many of us experience. We can do all we know to do to reduce our chances, but there is nothing that is guaranteed to make us bulletproof.  So, I continue to eat healthfully (whole food, plant based), work on my mental health (PTSD is a very real part of these journeys), and pray this is the last time I face this disease.  I know many of you have been affected by cancer or have someone close to you who has.  There is so much fear associated with this diagnosis.  I recently read “Courage is fear that has said its prayers.” So, I pray.  I pray for courage to just do the next thing and a peace that passes all understanding.  I pray that for every one of you as well.  Let’s embrace the comfort and hope that is found in community and continue doing this thing called life together!

 

Broken into Beautiful

/ 2 Comments

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!

 

Daily Radiation and Chemo Induced Peripheral Neuropathy

/ 3 Comments

Two weeks after my final round of chemotherapy ended 6 weeks of daily radiation began. By then I was just putting one foot in front of the other. I have heard horror stories of the pain and burning that radiation caused. If I’m being honest, my radiation was not as bad as I anticipated. Yes, I had some burns, deep aching, and additional exhaustion, but compared to chemo, not that bad. It was during these 6 weeks that the Chemo Induced Peripheral Neuropathy symptoms began. At first I didn’t know what was happening. My hands and feet were getting numb and feeling really heavy. Then they started tingling and burning. By the end of radiation I was barely able to walk because of the total numbness and excruciating pain (yes, at the same time) and was shuffling like an old person. The constant pain was so bad I barely got out of bed. I didn’t know how I was going to live like this (let me add that I was still terribly sick and weak from the chemo). My Oncologist sent me to a Neurologist specializing in Neuropathy. After evaluating me she asked what was the dose of chemotherapy drugs I was administered. When I told her about the high dose of Cisplatin she shut my chart and said there was never going to be any improvement. This was going to be a chronic condition I would have to learn to live with. Even at half the dose I was administered the Neuropathy would likely be total and permanent. She prescribed a high dose of Lyrica (which was later changed to 2400 mg/day of Gabapentin), said there was really no need to schedule a follow-up because there was nothing she could do, and that her office would continue to refill my prescription as long as I needed it (as in “forever”). Doctor 1, Hope 0. My logical brain understood what she said, the Cisplatin dose was twice the dose needed for permanent damage, this pain was my new normal. I didn’t want to accept it, but what choice did I have? After all she’s the expert. This is a question I still struggle with every day. You see, this was almost 4 ½ years ago and I am still in chronic pain. But I now believe that that doctor may know what she learned in Med School, but she doesn’t know me, my body’s ability to heal, or my God. I have spent the better part of the last 4 years researching alternative healing modalities and I have tried quite a few. I don’t mind being a guinea pig in this lab called my life. I will biohack myself until I heal this Neuropathy or run out of time on this planet (I will share the different modalities I have tried and what my thoughts/results are in future blog posts). You see, I truly believe that if I have hope it’s not over yet!