Part Forty-One: There is a Bell

            Across from the scheduling desk at OCSRI-Tulsa, there is a bell mounted on the wall with instructions next to it.  Upon completion of chemotherapy treatments, one is supposed to ring the bell three times. 

            Mona reminded me of the bell after my appointment with Dr. Moussa.  He gladly accepted my report about Wednesday’s visit with Dr. Smith, signed me out of chemotherapy on the computer, listened to my concerns about neuropathy, took a quick look at the new sore and swelling on my left arm, diagnosed it as cellulitis, and prescribed an antibiotic.  He looked at the calendar on the wall and entered in the computer an appointment with him for December 12, one month after my surgery.  He shook my hand and said he would send a nurse right in to take my port needle out from the blood draw for the usual lab work before my appointment.  Less than a minute later, the sliding door opened, and there he was with a nurse he had snagged in the hallway.  With a big grin, he joked, “Here is the nurse.  She’s never taken out a port needle before, but you can be her guinea pig.”  Naturally, she was an expert.  As we all left the exam room a couple minutes later, the technician who took my vital signs and entered my information on the computer gave me a big hug and a “congratulations.” 

            What a wonderful feeling it was to head straight back down to the first floor instead of down the hall to the chemo treatment room.  When we got to the bell, I asked Mona to take my picture before I rang it three times.  What I did not expect was the applause.  I turned to see the scheduling staff and various patients clapping for all they were worth.  The end of chemotherapy suddenly felt real as this host of strangers celebrated with me.

            A surprise was yet to come.  One of the schedulers led us over to the cafeteria area, which just gained a Starbucks about a week ago, and informed me that I would get a free coffee.  I decided on an iced caramel macchiato.  The barista told me the back story:  last week, a woman who had just finished chemotherapy had ordered a coffee, saying she was celebrating.  A moment later, the bell rang, and the barista realized that person had just finished chemotherapy.  She decided then and there that she would pay for a free drink for each bell ringer. 

            Funny how ringing a bell sealed the moment for me.  I am officially done with chemotherapy.  Today (Friday, October 28) I rang the bell on the hardest four months of my life.  Thanks be to God!

Part Forty: Two Words

            Today I saw my breast surgeon.  I told her about the neuropathy I’ve been dealing with for the past 2 ½ weeks despite the 25% reduction of my October 14^th chemotherapy, and the cancellation of my October 21^st chemotherapy.  She said, “Let’s take a look.”

            I looked over at the small screen as she started the ultrasound even though I can never decipher the images.  All I saw today were some white streaks.  She scanned back and forth multiple times before she said two miraculous words: “It’s gone.” 

            The words “Thank you, God!” burst out of my mouth.

            And then we talked.  She is sure my oncologist, whom I will see on Friday, will agree with stopping the chemotherapy and moving straight on to surgery, which she put on her schedule for November 14^th. 

            To be honest, I never expected this.  I hoped that the tumor would be smaller.  It never occurred to me that it would be gone.  The lumpectomy will remove the tissue where the tumor was as well as the sentinel node.  Then we will wait on the pathology report, and then we will discuss radiation therapy.

            In the meantime, this most excellent news is still settling in.  Maybe the more people I tell, the more it will seem real.  I will add three words of my own, three words I will repeat many times over each and every day: “Thank you, Jesus!”   

           

           

            

Part Thirty-Nine: Dear God

Dear God,

            Everything hurts tonight.  My arms ache deeply.  My shoulders hurt.  My legs feel heavy.  The headache comes and goes.  The mild nausea persists even after I take the anti-nausea medication.  My head is buzzing with tinnitus, and the rest of me is buzzing with neuropathy. 

            Mornings are hard.  My body feels like it is weighted down with lead.  Today, though, I did not need my morning nap, so I used that time to write my church newsletter column and then tried unsuccessfully to get the new thermostat connected to Wi Fi.  When I saw that Dana was home from grocery shopping, I went over and played with Josiah while she put away groceries and got their lunch ready. 

            After I came home, ate lunch, and wasted an hour on the Internet, I took a nap in the recliner.  I woke up feeling lousy.  Lately I feel worse after naps, and I’m not sure why.  Slight nausea, muscle aches, and neuropathy are not a great combination.  A little later, I decided to take a walk, but the longer I walked, the worse the neuropathy got.  It moved from the soles of my feet on up my legs. 

            After putting my feet up for a while and not feeling better, I decided to go back over to Dana’s and hang with the kids while she fixed dinner.  Josiah walked right over to me as I squatted down.  He put his hand against my cheek and looked me straight in the eye as he said “Hi” with the emphasis on a “y” sound at the end.  It was so sweet.  I walked over to Joelle, and we gave each other a big hug.  She proudly showed me the pumpkin sticker that her preschool teacher had given her.  The next thirty minutes passed pretty quickly between sitting with Joelle on the couch watching the end of Tangled and playing variations of catch with Josiah.  When Dana went out to get Benjamin from the school bus at four, Joelle and I stayed in the living room and Josiah toddled over to the front door.  I could hear him happily babbling away as he watched Dana and Benjamin coming up the sidewalk to the house.  Benjamin came over to me, made the sign for “please,” and grabbed my hands to start the motions for “The Wheels on the Bus.” 

            You know what, God?  I’m glad I decided to write about my day to you because it reminds me that there is a lot of good even on these feeling-bad days.  Yes, I’m really tired of pain and neuropathy and itchy rash, but I am so very grateful for my family.  It is an incredible blessing to live right across the street and get to see my grandchildren just about every day.

            Thank You for moving me from complaining to gratitude.  I needed the reminder to find joy in the little things.  There is so much to be thankful for every single day.  Somehow I have forgotten that lately.  Help me to choose joy again.

Yours truly because of Jesus,

Janis

Part Thirty-Nine: Another Week

            Very discouraged last Saturday, I asked for prayer at the end of my blog.  What happened astounded me.

            Right after posting, I was idly scrolling through my Facebook news feed, simply passing time.  It wasn’t long before the weight of discouragement suddenly lifted from my shoulders.  I immediately knew it was because of prayer.  Not mine, but the prayers of friends near and far. 

            The next morning at church I shared that experience and continued to feel its victory.  But as the week wore on, I succumbed to discouragement again.  I prefer peace, but even when my emotions are low, I know that God is the one in charge.  As several friends have reminded me this week, “He’s got this!”

            But I am not going to lie.  Discouragement and fear keep doing battle with peace.  I find myself discouraged with the peripheral neuropathy and afraid of it being permanent.  In other words, I’ve let worry in.  The big question for me is if I can let go of worry for the future, knowing God will be with me no matter what it holds.

            I’ve been reading up on peripheral neuropathy on various websites, but concentrating on those that provide information for health professionals.  I may not understand everything I read there, but the information is more complete.  I’ve learned that peripheral neuropathy is one of the more common reasons chemotherapy gets interrupted or stopped early.  I’ve learned that early intervention (reduced dosage, different chemo schedule or drugs, or stopping early) is key to increasing the chances that the neuropathy will go away or at least lessen over time.  I’ve learned that neuropathy can affect sensory, motor, and/or autonomic nerves. 

My own symptoms are mostly sensory.  The soles of my feet get more numb the longer I walk.  My balance is less sure.  At this moment, my ears are buzzing and my arms, hands, legs, and feet are tingling.  For most of Thursday afternoon, the top of my right calf cramped as if a narrow band squeezed my leg.  I don’t know if neuropathy causes skin problems, but several days ago, an itchy rash appeared on my arms just above the elbows.  A couple days before that, a rash appeared on my hands from the base of my thumbs up to the first knuckles.  The left-hand rash also itches at times.

I was given the day off from chemo Friday.  Next week I have appointments with my breast surgeon and my oncologist to figure out what comes next.  I’ll ask for prayer again, this time for wisdom to make the best choices.

           

            

Part Thirty-Eight: Stress

            It’s been a rough week.

            I am stressed and worn out over the mudslinging of the 2016 presidential campaign.  I am stressed and worn out over my son’s ongoing struggles.  I am stressed and worn out over a week’s worth of peripheral neuropathy.

            So, since this is my breast cancer blog, I’ll skip the first two stressors and talk about the chemo-induced neuropathy.

            Now, to explain, I have had some neuropathy on and off for twenty years now:  ulnar nerve neuropathy, occasional shooting pains in my feet, the odd muscle firing in some odd spot once in a while, numbness and tingling sometimes.  But what I’ve experienced this past week goes far beyond anything I’ve experienced before.  It doesn’t stop; it merely varies in intensity.  It’s whole body.  It’s messing with my balance and my coordination.  Today, as I drove to meet some friends for lunch, I realized I had to pay attention to my braking to get it right: otherwise, I hit the brakes too hard.

            Yesterday, when I described all these symptoms to my nurse practitioner before having chemo, she was very concerned.  She cut my Taxol dosage by 25% and said that if that doesn’t help, we might have to stop chemo early and go straight to surgery.  That’s not optimal as far as cancer treatment goes, but neither is permanent, severe neuropathy.

            Yes, this is hard.  I am discouraged.  I’m not feeling particularly peaceful at the moment.  My ears are buzzing with tinnitus.  My head, arms, hands, fingers, body, legs, feet, and toes are tingling.  If you are a praying person, please pray for me to re-focus back on the God who is my strength and song. 

Part Thirty-Seven: Suddenly

            It happened suddenly.  Hyped up from the IV steroids part of Friday’s chemotherapy, I laid in bed listening to music, hoping to doze at least through the night.  I have the most comfortable bed in the world:  high-quality memory foam mattress and pillow, snuggly body pillow, soft sheets, and just-right quilt and blanket, all topped off with the pale pink teddy bear Dana gave me while I was in the hospital.

            One second, I’m musing to praise music, and the next I notice that all four limbs are tingling with a little burn.  It doesn’t go away.  It’s not painful, just different and quite distracting.  I’ve never experienced peripheral neuropathy quite like this before.  I hope it won’t be permanent. Eventually I nod off.  In the morning, the intense tingling has faded to a memory, though my knees are extra wobbly as I get out of bed.

            I have a great Saturday, though the neuropathy keeps playing in the background.  Arms and legs buzz ever so slightly, kind of in sync with the tinnitus that has played in my brain for years.  When I told my daughter about last night’s onset of this particular Taxol side effect, she asked if it would go away.  The answer could be yes, maybe, or no.  It could be temporary or permanent.  It could get better or worse.  Naturally I hope for temporary and better.

            Today, Sunday, it is worse.  From the soles of my feet to the top of my head, that low hum has continued all day.  I’m walking on the buzz of almost-numb soles, feeling the infinitesimal tremble of my legs and shoulders, sensing the tension-wire tingle traveling from shoulders to fingertips.  This new and unsettling reality puts me a little off-balance in more ways than one.

            “Suddenly” is a good word to remember.  So many things in our lives hit unexpectedly.  Some are wonderful, others are definitely not.  All require a response.  I’m hoping mine will be resilience.

Part Thirty-Six: Vacation Days

            Folding laundry earlier this week, I suddenly felt as if I were on vacation.  It seemed a bit odd for a moment, but then I realized it is true.

            Taking back on some everyday routines is just about as good as shedding those routines to go on a trip.  True, beach, water, and mountains sound awfully good right now, but since those are not in the immediate forecast, I’m enjoying today’s landscape.

            A line from an old song, probably dating to the 70s, just popped into my head: “You don’t know what you got till it’s gone.”  Isn’t that the truth?  The week before I was hospitalized for pneumonia, I lost a lot.  My oxygen-starved brain did not recognize how ill I was becoming, but my back and knees knew they could not bend.  I could not pick up and carry my laundry out to the washer, nor could I reach into the washer to put it in the dryer. Folding anything was out of the question as well.  My daughter did my laundry and picked up all the stray Kleenex and anything that had landed on the floor.  I simply could not, unless I was willing to experience even more excruciating pain.

            So there I was at my bedside early this week, folding up a second load of laundry and feeling pretty amazed I could.  But laundry does not all of my vacation make.

            There are walks around the block now with one of my neighbors.  There is time hanging out with my grandkids.  There is freedom to get into my car and do my own errands.  There is going to Bible Study Fellowship on Tuesday evenings, choir practice on Wednesday evenings, and church on Sunday mornings. 

            Food tastes good again, and the metallic taste in my mouth is gone.  True, my tongue feels like it is burned, and my sore-prone mouth prefers soft to crunchy.  I seem to be losing my eyelashes, but my scalp is covered with a soft buzz of hair, maybe as long as an eighth of an inch.  I can manage two-hour outings, sometimes even three-hour.  I have enough concentration to read books. 

            This morning during my chemo here in Bartlesville, I remembered to take a selfie and drowsily said a prayer with my nurse between Benadryl and Taxol.  Before the Benadryl at least, shy me enjoyed conversation with the couple who shared that nice little end corner of the chemo room that has the advantage of being close to the bathroom. 

            My neighbor dropped me off at 9:30 am and picked me up at 1 pm.  I took a nap, ate a snack, read my mail, and then did something totally unprecedented:  I walked down the block and back.  Never before have I done that on a chemo day. 

            I love vacations.

Part Thirty-Five: Look Back, Pick Up, Move On

            Titles have a habit of popping into my head during showers or at any time no pen or pencil is available.  Sometimes I lose them, but sometimes if I keep repeating them like a mantra they stick in my head long enough to scribble them down or get to my computer.

            So this Monday morning here I am at my computer, title recorded, to think more about choices and regrets.

            It would be wonderful if all choices presented themselves clearly.  Once in a while they do, but much of the time they don’t.  Even the most detailed pro and con lists fail to clarify.  Have you ever made a poor choice that you thought was a good choice—or vice versa?  Or wondered what would have happened if you had made some different choices?

            The problem is that hindsight is so much better than foresight.  It’s easier to look back on one’s life and see cause and effect chains than it is to predict them.  Of course, that also makes it easy to get stuck in regrets or what ifs. 

            That’s where this morning’s title comes in.  Looking back is a good practice, I believe.  I can learn from my past choices, whether good, bad, or indifferent.  Or black or white or gray.  But if I get stuck in the what ifs and regrets and spend my present spinning my wheels over my past, well, that is really counter-productive.  Picking up is acknowledging the decisions I have made over a lifetime (or a day or an hour) and putting them to rest so I can move on. 

            Which is exactly what I plan to do at this very moment:  now that the initial words are recorded to review and revise later, I’m going to Walmart.

Part Thirty-Four: This Is What I Should Have Done

            This is what I should have done, Mona, but I didn’t. 

            I should have asked you to speak up for me.  I already knew from the last two chemo sessions that by the time the Benadryl IV finished, I would drowsily shrug off the good habit of stopping to pray with the nurses before they gave me the Taxol.  My daughter started that practice way back at my first treatment at the end of June.  And somehow in September I have shrugged it off.

            After all, you knew the routine, and you brought up taking the picture of me to post on Facebook.  Thank you.  That’s another thing I have not done the past two weeks—I was by myself and could have taken a selfie—but in those cases I actually forgot to do it.  And not taking a picture is not the same as not praying.

            If I were to mount a defense for not pausing to pray with you and the nurses, I could say that I prayed silently for the Taxol’s effectiveness in killing the cancer cells.  I could say that last week Sue prayed with me before dropping me off at the Bartlesville clinic.  Those actions were good, but they do not absolve me of my inaction.

I’m not superstitious about this.  I don’t see prayer as a magic wand that one must wave at specific times in order to receive God’s blessings.  I see it as conversation with Jesus, who died for my sins and who wants a close relationship with me.  Both are such mind-blowing concepts that I can hardly wrap my head around them.  Yet, on Friday, for the third week in a row, I rejected a moment of prayer that could have been a blessing to all involved.

            So why did I cop out?  Why do I resist God’s nudges?  Why is it so easy to not do the very things that would draw me closer to the lover of my soul?   I refuse and resist God because I still insist on my way.  You know that old saying, “It’s my way, or the highway?”  I want to do what I want to do, which is usually the easy way out.  In Friday’s case, it was starting a nap. 

            Now, people might say I’m getting worked up over something insignificant.  But I don’t think so.  Everyone’s life is made up of choices, some big and some small.  Those choices add up to something hugely important:  character.  Who I am today is, to a large part, the cumulative effect of choices I have made throughout my life.  It turns out that little things are, in fact, big things over the long haul. 

            I’ve already had a conversation with Jesus about my poor choice not to pray and told him I am sorry.  The amazing thing is that he accepts my apology and goes a huge step beyond:  he uses what I have just confessed to grow me closer to him. 

            What I should have done is what I will choose to do this coming Friday.  Why?  Because Jesus’ way is far better than “my way or the highway.”  It is the pathway of peace.