The Dance

               Having multiple myeloma, as I am sure with any chronic disease, is a dance. You take two steps forward and one back. Or some days you take two steps back and one sideways. And then, there are those days when you take three or four steps forward, like my day yesterday.

               I met with my oncologist at Vanderbilt yesterday and here’s a recap:

1. My numbers looked good! My calcium, phosphorous, and magnesium were all in the normal range – the lower side of normal – but still normal.  Those numbers have been a see-saw for me, living mostly on the line between bad and acceptable.
2. My appointments are going to change.  Since my stem cell transplant, I have been going to Vandy monthly for blood work and if said see-saw was on the upswing, a shot. I’ve discussed the side affects of the shot in a previous blog, so I won’t repeat them here.  Yesterday, I got the news that my bloodwork and shot appointments would now coincide with my oncology appointments. That means every three or four months. I cannot tell you what a relief that was.
3. I can stop taking one of my prescriptions, the anti-viral. There are a couple of great things about that – one, my immune system is good enough to discontinue it, and two, one less pill is a mental victory.

Another small, but important victory this week is my hair. Since losing my hair I have been bald, had wildly curly hair, and most recently wiry hair that was uncontrollable. But, this past weekend, I ran my hand through my hair and realized it was soft. I cried. It was a twenty-month cry, a release of sorts, a feeling of normalcy. I said along the way that I didn’t care about my hair, and I really don’t. But, I do care about returning to normal.

It hasn’t all been steps forward, as is true in all dances.  I went back on gaberpentin this week for my feet. It felt like a step backwards, when in reality, it is more of a side-step. I went off it months ago, looking for a non-opiod solution to neuropathy. I tried a myriad of other solutions, but decided medication was my best option. Medication in and of itself is not a bad thing. However, somewhere in my mind there is a flag that goes up, a “danger Will Robinson” flag, if you will, when I have to take a medication. Only this flag says, “you are weak”. I wouldn’t say that to anyone else taking a medication but it’s always my first response for myself.

I’m working on being kinder to me.
The majority of steps in this dance have been small. But, honestly isn’t life lived in the small moments? The big moments are great – but few and far between. Every step in the dance is important. Backwards. Sideways. Forward. We draw strength from the steps back, rest from the steps to the side and find joy in the steps forward.

Oprah Winfrey said it best “Every day brings a chance for you to draw in a breath, kick off your shoes, and dance.”

       

It’s a Good Day to have a Good Day

               I’ve written a lot lately about the trials and tribulations of my journey with multiple myeloma, and there have been quite a few. But there are also good days. And today is one of them. So, what do you do with the good days when they come? Here’s what mine looks like. 

               First, I work. Work is so important to my mental health. I don’t do well when I am idle. I am a learner by nature --- or as my friends call me --- a geek. I would go to school perpetually, if I had a way to support myself. I don’t necessarily want a degree. I know that’s weird. I just want to learn. I am blessed to work in an environment where I have been allowed to learn. Anyone who knows me knows that I am an excel nerd. Nothing excites me more than learning a new formula.  Yes, work is important on the good days.

               Breathe. Fundamental, yes? But think about it. How often do we take a moment to take a good, deep breath? I’m talking about the kind of breath where you inhale grace and joy and exhale the weariness and pain. One of my favorite scriptures is “Be still and know that I am God; I will be exalted among the heathen, I will be exalted in the earth”. Psalms 46:10 Throughout the day, I will take a deep breath (be still), feel the peace (know that I am God) and give thanks (exalting God). I honor this verse in other ways in my life, but most commonly throughout my day in this manner.

               Rise by lifting others. I honestly don’t know who said this first, but to whomever it was, thank you. There is no truer statement in my life than this one. It is one I try to live by, and often fail. But, when I get it right, it is the best feeling there is. I do this by tipping my server extra, especially if the service is not stellar. I have no way of knowing what kind of morning they have had.  Maybe they have a sick child or just got a diagnosis like I got. I do it by complimenting the nervous young man in the elevator with the crumpled suit, fidgeting in the corner or the young lady with more piercings and tattoos than skin. Has someone told either of them lately that they are seen, they are worthy, beautiful? It doesn’t cost anything to lift someone else up and I believe God honors those small acts of kindness.

               Rest. On good and bad days, rest is equally important. It renews me and fortifies me for the days ahead. Rest that is chosen on a good day, feels entirely different that rest that is hoisted upon me on a fatigued day. There is great satisfaction in good-day rest.

               Smile. Such a little thing, smiling, and yet so important, to you and to others around you. I like to notify my face that I am having a good day and send that signal to those around me. They should see the fruits of the love, support and prayers they have showered me with on this journey.

              

Chin Up...

It’s a “keep your chin up” kind of day. You know the ones, when everything seems to take too much effort. The kind of day when you just want to say, “I don’t want to anymore”. Whether we will admit it or not, we all have them. I had them before my diagnosis, and I have certainly had them since. I have them more often now, though. And if you are dealing with a chronic illness, like multiple myeloma, pain, medications, fatigue, insurance companies, I can lay odds that you have them more frequently too. 

Here’s how I work through it.

1)     I remind my self that this is not my permanent state of mind. I’ve had more good days than bad over the course of my life, and I have more good days ahead of me. When you are in the middle of the bad day, it can seem endless. Especially if two or more of those days come in succession. But, this too shall pass. There are good days on the horizon.

2)     I focus on others when I feel this way. I pray for someone else having a harder time than I am. There is always someone going through something worse, the death of a loved one, a child who is seriously ill, the loss of one’s job and home. I like to write notes to people to remind them they are not alone – whether through texts, facebook messaging, or a hand- written note.  If a loved one or friend “occurs” to me through the course of the day, I reach out to them. These impressions should not be overlooked. I believe they are God’s way of letting us know that person needs to know they are loved.

3)     As a Christian, the thing that helps me survive my “chin-up” days the best is to draw closer to God. Generally, for me, that means worship. I find a song that speaks to me, and sometimes I listen to it on repeat a dozen times. Music, especially worship music, is healing to my soul.

4)     I count my blessings. For me, this is a way of giving thanks. I know that’s sounds trite, but it really works, if you do it earnestly and sincerely. It is difficult to feel sorry for yourself in the middle of being thankful.

5)     And, if all else fails, I drink a big ‘ole Dr. Pepper.  It’s my version of crack.  I try to stay off the sauce, but some days you just gotta have what you gotta have.

How do you deal with those days?

It’s Shot Week

               As part of my on-going treatment for multiple myeloma, I receive a shot once a month of Xgeva.  Xgeva is given to MM patients and cancer patients whose cancer has metastized to the bone. The primary function, as I understand it, is to help prevent breaks.

               For me the routine is as follows. Once a month, I go to the Vanderbilt labs for blood work. I then go to the oncology room to wait on the results of said bloodwork.  When I started this process, my wait time on results took approximately 1.5-2 hours. The last 3 times have taken up to 4 hours.

               Since my diagnosis, my opinion of sitting in a waiting room has drastically shifted.  On the day that the lesions were found in my bones by an orthopedic doctor, I went directly to my primary care physician to begin the diagnosis process. She pulled me directly out of the waiting room and began running tests. I cannot tell you what it meant to me to have her attack my issue so quickly and thoroughly. And now, when I sit in a waiting room, I think about that and I think about the next person who might need a quick response to a life-altering diagnosis.

               With all of that said, sitting in a waiting room for 4 hours is still not a comfortable scenario. The seats are hard and the magazines are old. My phone battery inevitably runs down and the afternoon shows on HGTV are always re-runs. As a Christian, I do use the time, however, to pray, for myself, my care team and the others in the waiting area. This week, there was some relationship drama playing out in the waiting room. It’s hard on my soul to listen to people fight, even if I am only getting one side of the conversation. I found myself deeply sorrowful for the young woman who was hashing out her relationship in a room where living is the main objective. I sure hope she finds her worth and a man who values it.

               A sweet nurse took me into one of the oncology rooms about 3 hours into my wait. I was so thankful for a warm blanket, a tv remote and a reclining chair. It would be another hour before my oncologist gave his approval of my labs for me to get my shot. And then, just like that, in a matter of 10 minutes, it was time to go.

               While everyone reacts differently to treatment, the aftermath of my shot is always pain. Pain in my joints. Pain in my back. Pain in every major bone in my body. Oh, and a raging headache, not a migraine, thank God, but a doosie nonetheless.  The pain is pretty intense in the first 24-36 hours. I walk like the crooked man walking his crooked mile. They tell you to take Claritin, and for the life of me I don’t know how it helps, but it does.  I take Claritin as part of my nightly meds and so going to sleep with the pain is less problematic than it would be otherwise.  However, I take a different antihistamine during the day, and it does not seem to affect the bone pain.  Go figure. 

               Today is day 3 after my shot this week and I’m beginning to feel better with only lingering pain in my right shoulder blade (the one that was broken) and hips. It’s much easier to ride the pain out when you know it will eventually go away. I’ve never had a high tolerance to pain, or illness for that matter, so every time I work through the “after-shot”, I remind myself how far I’ve come. It’s as important to the healing process as any prescribed medication, and some days just as hard to swallow. I don't get it right every time, but I'm learning.

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.