Tag: Neuropathy

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).

 

I Am Here

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You may be asking yourself, has Hopeful Survivor fallen off the face of the earth?  Is something wrong?  Did she decide to stop blogging and never tell anyone?  The answer to all these questions is “No.”  I am painfully aware that I have been MIA lately.  I haven’t blogged in a while for two main reasons. One is that I have had one health issue after another.  None are life threatening (thank God) and after a cancer diagnosis I feel like non-life-threatening ills shouldn’t count.  But they do.  They still make you feel lousy, sap your energy, and lead to discouragement.  It all began with a UTI in September, followed by the lead up to my regularly scheduled cancer scans (which always cause worry and anxiety).  Before I even learned my results (yay, they were clear!), I started with the symptoms of what I now call “The Plague.”  I am not trying to be melodramatic, but after two doctor visits (in which I was told it is not the flu, but will last and feel like it), and 7 weeks flat on my back, I didn’t know what else to call it.  A cold just didn’t seem to adequately describe it. Thanksgiving this year was spent in bed, as my wonderful husband made our Thanksgiving dinner, complete with turkey, for just the two of us.  That took me into December and yet another UTI.  And let’s not forget the ever-present peripheral neuropathy.  So, blogging wasn’t exactly in the forefront of my mind.

The second and bigger reason was that I didn’t feel like I had anything to say.  I truly feel that this blog is a calling for me.  If I am being honest, I would prefer not to do it, as I am normally a very private person.  But I know that I know that I know that I lived through my cancer battle for a reason. I never forget that my prayer during that time was if I had to go through all this, that it not be wasted. I also know that, when diagnosed, I searched for one person who had lived with my very rare form of cancer (Undifferentiated Pleomorphic Sarcoma of the pelvis) and couldn’t find anyone.  I thought that if one other person had survived, then I could too.  So now I offer myself as that person for those of you who feel hopeless and despondent. That is my message, so I actually do have something to say.  If you are feeling that life isn’t fair, you are correct.  If you are feeling like you can’t take one more thing added to the long list of things you are currently dealing with, I am right there with you. But if you feel like you can’t go on, you are wrong.  You can go on and life can get better!  Maybe not in a linear fashion, getting a little better every day, but it can get better. Hope plays a huge part in that. There is always hope that tomorrow may be better than today, or at least next year may be better than this year. If we give up hope, there really is no reason to continue fighting the fight or take the next step on our journey (whatever that journey may be).  I am still here for a reason and I believe it is to help spread hope to the hopeless.  If you are feeling hopeless in one or many areas of your life right now, I am here. I understand and I care. Sometimes listening, encouraging, and refusing to give up on each other is why we are here.  I AM HERE!!

 

Be Still and Know

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That’s a tough one for me.  You might wonder which part and my answer is “both.”  Let’s start with “Be Still.”  In this world, how is it possible to be still?  With the constant bombardment of 24/7 news, the ability to be connected anytime and anywhere, cell phones, emails, texts, Facebook, 100s of tv channels to choose from, the internet, and seemingly endless to-do lists, how can we possibly be still?  And then add in being raised in a household where accomplishments and “doing” were valued much more than simply “being,” coupled with my type A, driven personality type and it is a recipe for anything but stillness.  What if someone saw me being still and thought I was lazy?  What value would I bring to this world if I wasn’t accomplishing something?  Who am I if I am not defined by what I do?

Then there is the “and Know.”  Where do I begin with that one?  How do we ever really know?  We can evaluate as many pieces of data as we can gather and try to assemble some level of knowing, but can we ever truly know?  Growing up I remember being told to not be ruled by my emotions.  Decisions were to be made using my logical brain and were to be based on facts.  Gut instincts were devalued or ignored completely.  I learned at an early age that what you thought out was much more accurate than what you felt.  So back to my original question, how do you know?

The last 5 years have been a master’s level course in the importance of being still and knowing.  When you are faced with life and death situations, chronic pain, fear, and uncertainties you are forced to face the importance of finding some time and space to just be still.  Turn off the electronics, phone, tv, anything that keeps you frantically busy and just be still. I find it much easier when I remove myself from my day to day environment.  It seems that there are always too many things to keep my mind racing when I’m at home.  Sometimes that’s taking a drive, going for a walk (not that easy anymore with the neuropathy), or taking a much-needed vacation.  Whatever allows my mind to disengage.  I think that’s what’s really important.  When you can get out of your head, you can begin to be.  Intuition, a concept I never believed in until recently, can begin to surface.  That’s where true knowing comes in.  I am only beginning to experience intuition and it is thrilling each and every time I actually feel/sense it. People see intuition as coming from many different sources; God, the universe, our gut.  I don’t think it really matters what you call its source, I think it’s more important that you learn to feel/sense it.  When you feel your intuition deep inside there is a level of knowing that facts and figures can never provide.  So, my recommendation is to find a place where you can truly be still and go inside yourself.  Ask what you are to know today, and just listen.  Sometimes the answer is a feeling, an image, or a sense, but often there will be some sort of answer, if we are still.  I am just beginning this knowing journey, but it is so much more real and certain than any of my left brain, fact-based journey to this point. Give it a try.  Take a walk on a beach, sit by a mountain stream, visit a park and practice just being.  You may be pleasantly surprised by what you find.

 

Daily Radiation and Chemo Induced Peripheral Neuropathy

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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!