Can You Hear Me Now?

                 I read this quote today and it spoke to what I am experiencing in this season of multiple myeloma: 

“Sometimes being silent is better than telling others how you feel. Knowing that you are being heard and not understood could be more painful than expressing your feelings.” C. Tang

               Let’s talk about my hair. I know in the big scheme of things, hair is superficial, at best. But, for a cancer patient, it is much more.  Hair represents healing. Hair represents some semblance of normalcy. The norm is that once you lose your hair and it starts growing back in, it comes back different – usually curly and darker. And, once you’ve had that cut off, your hair returns to normal.

               Not so for me. Because there is no cure for MM, and my oncologist opted for me to continue low-dose chemo for the rest of my life or a cure is found, my hair does not have a chance to return to normal. 

               I set out last week trying to find someone who could understand this. Each time I inquired if anyone could do “chemo hair”, I got the standard answer. “Once we cut it a time or two, it will be normal”. No, it won’t. My hair is 13 months past remission and new growth. It. Is. Not. Normal.

               Hear me, please.

Then understand me, please. I have cried multiple times this week trying to find someone who will hear me and understand what I am saying. Every morning when I look in the mirror and see this hair, I am reminded of my disease, of the lifetime of chemo, of the control I no longer have.

I have finally found someone new to help me with my hair. I see her on Saturday. I’ll let you know how it goes.

Then you will call on me and come and pray to me, and I will listen to you. 

Jeremiah 29:12

Fear

               I am not afraid to die. What I am afraid of is living. Living with constant aches and pains. Living with the fear of myeloma recurring. Living with the financial burden of never-ending medical expenses.

               I am ashamed of my fear. As a Christ follower, I know that we are told to “fear not”. We are told to “cast our cares” on the Lord. I have visualized kneeling at the feet of Jesus and laying my burdens down. The thing is, I have to do it multiple times during the day and night. And, I still feel this way.

               I am ashamed of my fear. I am ashamed of the weakness that fear exposes in me. When you are in the middle of an episode of fear, it is difficult to see beyond it. My dear friend, Dawn, strongly dislikes the use of the words Always, Never, Everybody. I get that. I also get that when you are dealing with a disease that has no cure, always, never and everybody feel like natural choices.

               I know all the answers. Pray and believe. Meditate on the Word. Cast your cares. This too shall pass. Simply choose not to be afraid. Some days, just one of those tactics is enough to hold the fear at bay. Other days, some combination of two or more is employed. And some days, you just have to ride it out.  That’s my today.

               I will fear no more. I will give my brokenness to my Savior, for He is more than able to calm my anxious spirit. I will meditate on Isaiah 41:10 - 

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

               This too will pass. My fear will eventually be replaced with a sense of peace – you know the kind – that passes understanding. It’s coming. And I will wait patiently.

Pruning

               This weekend was the first time since my diagnosis that I have felt up to doing some work in our flower bed.  Our crepe Myrtle’s were looking pretty bad. After all, they hadn’t been pruned in over two years. The weather here was spectacular on Sunday, so I got up early (when my energy level is at its best), got the pruning sheers and went to work.

               What a chore. There were hundreds of tiny branches sprouting all up and down the trunks as well as several larger ones growing at odd angles and from places lower on the trunk that needed to come off.  Our HOA limits the height our trees can be, to prevent clogging the gutters on the roof. Our middle Myrt was taller than the roof line and needed to be cut down. Additionally, the Myrt closest to the house has to be at least 12 inches from the foundation. Several branches needed to come off to accomplish this.  Finally there was the task of gathering the branches to dispose of them. I should have worn gloves. My hands and forearms look like I lost the battle, but I didn’t. 

               When all was said and done, I was very pleased with the work I had done. And, I know the work I have done will help to keep them healthy and blooming for seasons to come.  As I stood there, looking at my handiwork, I was reminded of the scripture in John:

I am the true vine, and my Father is the gardener.  He cuts off every branch in me that bears no fruit, while every branch that does bear fruit he prunes so that it will be even more fruitful. John 15:1-2

               God has been pruning me through this journey. He has removed all the small branches that are so easily distracting. They aren’t bad things, but things that distract me from my purpose.  When you are sequestered for weeks on end, you have plenty of time to think about what’s important in your life. Loving the people God has put in your life, finding forgiveness for them and for yourself, and being thankful for every moment – the good ones and the bad ones alike.

And then there are the bigger branches, the ones that grow along the trunk unnecessarily, drawing sap from the branches that need to grow stronger. Some of those hurt, I’m not going to lie. I’ve always done what I wanted to do when I wanted to do it. I don’t have a spouse I have to consider. I make my own money. But, over the years, there have been things that have taken root in my soul that needed to be gone – pride, the need to be right, the desire to be the expert at anything I do. You know the kinds of things I’m talking about.

Even this blog is a part of my pruning – being honest about my struggles is hard. It’s wrapped up in my desire to not harm the cause of Christ – which, in itself, is a worthy goal. But when that goal turns into checking every few minutes to see if anyone has read or liked the blog, then it is not serving its purpose. Not in me, at least. My sincere prayer is that the blog reaches someone who needs encouragement. That’s the branch I hope bears fruit.

              

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.