Neuropathy

               If you found this blog because you, or someone you love, has been diagnosed with Multiple Myeloma, welcome. And, I’m sorry. I’m sorry you had to hear the word cancer. I’m sorry you are now on a life-long journey with this disease.  While it’s true that everyone responds differently to the disease and the treatments, hopefully there will be something here that helps you.

               I am 14 months out from my stem cell transplant and 20 months out from my diagnosis. I responded well to treatment, better than my oncologist expected. And yet, last night, a year after being told I am in remission, I had one of the worst nights I’ve had in a very long time.  I am still dealing with neuropathy in my feet.  I stopped taking the prescribed pain medication several months ago because I did not want to continue to take an opioid. I began searching for other ways to manage my pain – cbd lotion, METANX (a prescription medicine for diabetic neuropathy), foot soaks, compression socks, and massages. For the most part, the pain has gone to a 4 on a 1-10 scale. Last night, however, was easily an 8 on the scale.

               For me, my neuropathy feels like my feet are always “asleep”. That’s a sensation I have 24/7. I also have random, shooting pain in my feet. It’s never in the same place twice, sometimes it is under a toenail, other times it is in the side of my foot. It doesn’t last long, but feeling like you have a needle stuck in your foot doesn’t have to last long to put you in a foul mood.  What I experienced at night, and have since I started taking chemo, is a feeling of great sensitivity in the arches of my feet. It feels like they have been burned. Even the weight of the sheet is painful. Most nights, it is held to a dull roar, but last night it was as painful as it has ever been.

               There’s no rhyme or reason to the pain. This is my off week for chemo (I’m on a 21 day on, 7 day off cycle). I didn’t do any excessive walking yesterday. I didn’t wear uncomfortable shoes.

               Today, my feet have a “hangover” for lack of a better description. The asleep sensation is coupled with lingering pain in the arches of my feet. My tops of my toes are sensitive. Really? The tops of my toes? For me there’s not a lot I have found that works except riding the pain out and waiting for it settle back down. And, praying it does before nightfall so I can sleep tonight.

Reflections on a year gone by

               It is hard to believe that in just a few short days, it will be 2020. It didn’t seem that long ago that everyone was panicking over Y2K and the impending collapse of the banking system, air traffic and anything else computerized.

               In 1974, a television show about the ‘50s seemed like a look into the distant past. And now the ‘70s are further in the past than Happy Days was when it aired. How did that happen? How can the days seem so long and the years so short? It’s a conundrum, to say the least. 

               2019 was just that kind of year. There were many days that seemed to drag on forever. Early on, I thought the days spent at home would never end.  The hours were drug down by boredom and fatigue. I couldn’t have visitors, so the only people I saw were my roommate and my doctors and nurses. Eventually, I was able to return to work on a part-time basis. It felt so good to be productive again, to see so many familiar faces and to have purpose again. But even the short days took their toll on me.  I slept from the time I got home until Lezlie got home and made dinner. Then after dinner, I went to bed. I was released to work full days in May. Progress.

               But, progress was marred by multiple health issues.  A fever sent me to Vanderbilt’s emergency room, and resulted in a short stay. Shots in the abdomen intended to help my body absorb calcium caused hours of pain. Side-effects from the chemo which included neuropathy and night sweats and hot flashes kept me up nights, unable to sleep. And then there was the stomach distress. I might have been released to work full time, but I couldn’t seem to string together a full 40 hours until August.

The summer heat caused instant nausea. The Fall has always been my favorite time of the year and 2019 was no exception. The cooler weather made everything better, except my allergies. I had a bout of bronchitis, and then two sinus infections and a new allergy was revealed – to an anti-biotic. Ugh.

Frustration and fatigue brought on depression. I’ll admit it, I didn’t respond well to being depressed. I started counseling and stopped after a couple of visits.  I had all my own answers and we agreed that working through my feelings through writing would be the best outlet for me.  So I began to write this blog more regularly. It helps.

It hasn’t been all bad. I was surrounded by my best friends in January when we got the news I was in remissions.  We screamed and cried and laughed and cried some more. In May, I got to celebrate my best friend on a cruise to Alaska (one we planned long before I got sick). My oncologist released me to travel just days before. We were uber-careful about flying and there were no buffets for me. I had several cute hats to wear, made with love by my sweet sister-in-law and a dear friend. And in October, on the anniversary of my stem cell transplant, I celebrated in Washington DC with my parents.  It was a wonderful trip, that I will cherish for the rest of my life.

So, here we are, December 27^th. Three days left in 2019. I am proud of myself for pushing through, but I certainly did not do it alone. My family has been by my side every step of the way. And, my friends (my second family) have been patient, supportive and oh, so kind. God has been so faithful. He has quieted every fear, captured every tear, and given me peace in the middle of the storm. How could I ask for more?

I don’t know what 2020 has in store for me, but I know who I will be walking through it with and I am thankful.

It Is Well

               When I was younger, I remember asking my father about being content. At the time I said I never wanted to be content because, in my opinion, that meant you weren’t growing or learning anything. I couldn’t understand how he could “settle” for contentment. How could he be satisfied with the status quo? Didn’t he want more?

               Fast forward 30 years (eek! How can it be that long?) More has been replaced with enough. Settle has been replaced with desire and status quo has been replaced with life experiences.

               I no longer need more because I have enough. Enough love from family and friends to keep me going through times of fear and doubt. Enough to keep my bills paid and meet annual deductibles that I never dreamed I would have to meet. Enough to have a full cupboard and warm bed. I don’t need more.

               I haven’t settled in my life, I have a great desire to learn and grow. I’ve been blessed with a boundless amount curiosity for making the works of my hands better, faster, more accurate. That curiosity brings me great satisfaction and sharing that knowledge with the people around me gives me purpose.

               And status quo? What is that, anyway? Life has been full of great experiences, people I’ve met, places I’ve been. I never intended to know a hematologist, but I do now. And he’s a wonderful man that I admire. I never thought I’d spend so much time in an infusion clinic, but it has afforded me the opportunity to pray and believe for the young woman sitting next to me, the elderly man in the wheel chair, the husband and wife holding hands.

               Contentment, I now understand, is about being at peace. The lyrics to It Is Well with My Soul grow dearer to my heart with each passing day: 

When peace like a river, attendeth my way,
When sorrows like sea billows roll
Whatever my lot, thou hast taught me to say
It is well, it is well, with my soul

            It is well. Not easy or without pain. But well. Content. Satisfied

Out of Control

            One of the things I have struggled with the most since my diagnosis is the feeling of being out of control.

Out of control with my health… My body has betrayed me. How could it do this to me? I have fed it, kept it warm, kept my cholesterol in check. No high blood pressure. No diabetes. All the while, it was crumbling on the inside, destroying my bones and immune system.

Out of control emotionally… The week I was diagnosed my support network saw fit to put me on an anti-depressant. And while I am thankful, I hate it. My motto in life has always been “the only thing we have control over is how we choose to react”. And now I don’t even have that anymore. I try. I really do.  I try to stay positive, to remind myself of my blessings.  And yet, I find myself crying into my pillow. Asking Alexa to play Casting Crowns’ “Oh My Soul” all night so I don’t wake up afraid.

Out of control spiritually… Let’s be honest here, while I have never asked God “why me”, I have wondered what His purpose was in all of this. And, couldn’t He accomplish it some other way? I have not worried about “healing” but I have wondered why He has allowed me to suffer some of the painful and distressing side affects of these medicines.

One of my favorite verses has always been 2 Corinthians 12:9 (NIV) 9 - But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore, I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 

If I am to believe that when I am weak, He is strong, then it stands to reason that when I am out of control, He is in control.

Hello, world. I am out of control. And it’s ok. No, it’s better than ok. For I know the One who is in control. And it is not His desire to harm me, but to give me hope and a future, see Jeremiah 29:11

I am sure I’ll have to remind myself of this, often. I may need you to help me remember it, too.

I am out of control, but He is in control.

I am out of control.

He is in control.

Thoughts on healing

This evening, a well meaning soul admonished me regarding being healed. She knew someone God had healed from cancer and if I would just believe, He would do the same for me.

I'll tell you all day long that I believe in the healing power of my God. I believe any and all healing is from God. It comes in miraculous deliverance, it comes at the hands of a physician, it comes after rounds of medical treatment. And it comes in the hereafter when we lay down these weary bodies.

I have no doubt that God will heal me. It's who He is. But right now, He has other plans for me. So, I will gather my strength and move forward trusting and believing that even unhealed, I am in the center of His will.

Scars

I was listening to the song Scars by I Am They this morning and the lyrics pierced my heart:

Waking up to a new sunrise
Looking back from the other side
I can see now with open eyes
Darkest water and deepest pain
I wouldn't trade it for anything
'Cause my brokenness brought me to You
And these wounds are a story You'll use

So I'm thankful for the scars
'Cause without them I wouldn't know Your heart
And I know they'll always tell of who You are
So forever I am thankful for the scars

It’s time. Time to get up and be thankful. Time to stop wallowing in this diagnosis. Time to let God use each doctor’s appointment as a chance to love people.

“Rise up and shine, for your light has come. The shining-greatness of the Lord has risen upon you.” Isaiah 60:1 NLV

I will draw in a deep breath of God’s grace; straighten my shoulders. There it is. I feel it. A smile. And, tears of relief.

I'm not happy.

I am not happy. There, I said it. Shouldn’t that make it better?

            This is not a question of whether I am blessed or not.  I know that I am.

            Nor is it a question of my faith. It has never wavered.

            So, what is it? What is keeping me from being happy? It’s this new normal. I cannot wrap my head around it. A lifetime of doctor’s appointments and a palm-full of medicine is ahead of me. I don’t want to. I just don’t. It’s not a question of whether this is fair or not. I certainly know that there are far worse things and that a lot of other people have suffered far more than I have with this disease.

            I want to lay down in the floor and kick my feet. You know, have a good, old-fashioned temper tantrum. That would accomplish nothing, though. Except make my hair flat on the back of my head. Lord knows I don’t need my hair to be any more of a mess than it already is.

            A friend of mine recently asked me if I ever thought about driving off a cliff or into a tree. Seems she’s been struggling with things in her life and the thought has occurred to her. I’m not going to lie, it has occurred to me once or twice, fleetingly.  It would be so easy just to be done with it all. No more worries about a job that I feel inadequate in. No more doctor’s appointments, or blood draws, or shots in the stomach. No more pills. No more overwhelming fatigue. No more puppies passing away unexpectedly.

            But there would be no more concerts or hugs from friends. No more puppies circling my feet to go outside. No more time to pray for people who are hurting. No more Sunday afternoons watching football with my best friend. No more snuggles with nieces and nephews watching movies or dancing with great-nieces. 

            Where does that leave me? If I want the hugs, the snuggles, to dance, I must have the pills, the shots, the appointments. The fact is I cannot have one any more without the other.


"And we know that all things work together for the good to them that love God, to them who are called according to his purpose."  Romans 8:28 KJV

             Yes, All things. I can't say that I am happy, but I am at peace. That's something.