Part Twenty-Nine: Taxol Day #1

            Holly and I arrived at OCSRI-Tulsa for my nine a.m. appointment.  Since school has started up again and my son-in-law is back in the classroom teaching, daughter Dana can no longer take me to appointments.  I am so blessed to have friends that jump at any opportunity to help me.  If there is a silver lining in the cancer cloud, it is friends:  acquaintances become trusted friends and trusted friends become even closer than before.

            In the lab, I was pleasantly surprised to have one of the nurses from my very first treatment.  It was nice to talk with her and find out the latest concerning her seven-year-old twins.  I even made sure to read her name tag, but already I have forgotten her name.

            From the lab, Holly and I made the short trek to the doctor appointment waiting area.  It didn’t take long before my name was called.  My oncologist had a medical student with him today, and after introductions, Dr. Moussa said with a smile, “Two doctors for the price of one!”  I rather like it when he has a med student because he then gives a brief summary of my case, most of which I understand.  Medical repetition is an essential learning tool for me.

            Both lab and doctor cleared me for today’s chemo.  We waited the usual twenty minutes or so in the treatment waiting room before being called back.  For the first time, I was placed in a “double.”  Most of the cubicles are set up for one patient; a “double” is set up for two patients.  I had my choice of recliners.  Then I was pleasantly surprised to see that the nurse who had done my blood draws in the lab earlier was also going to be my main nurse for treatment!

            She hooked me up to the first IV drip—a steroid/anti-nausea combination—and not long thereafter an older gentleman was directed to our cubicle.  He sat down in the other guest chair instead of the other recliner.  I don’t remember exactly how, but Holly included him in our conversation and he shared his story.  His wife died from cancer twelve years ago, and now he has cancer in several organs.  He explained, though, that he had felt led to just do injections instead of IV chemotherapy.  We talked about our faith in Christ.  He has been a music minister since 1958, and the peace and love he has for the Lord simply exuded from him.  It wasn’t long until he was called away to receive his injection, but those few minutes talking with him were the highlight of the two hours in the treatment room.

            I remembered to have Holly take my picture and to stop everything to pray just before the chemo drug, Taxol, was hooked up even though I was more than a little drowsy and spacy from the IV Benadryl drip.  I dozed for a good part of that last hour.

            Earlier, I had been given my Bartlesville and Tulsa dates from the scheduling office, so all that remained was a stop at the in-house pharmacy for a refill of one of my anti-nausea drugs.  And then the drive home, pleasantly filled with conversation and laughter.  I noted the relative absence of lower back pain, which was especially wonderful after what had happened this morning when I got up—the most intense lower back pain I have ever experienced.  Every movement caused excruciating pain:  walking, reaching out or up or down, turning, sitting.  I took a pain pill, which started to help a little by the time Holly arrived, but I could not carry my bag and getting into her van was challenging. 

            I’m thinking that seeing an orthopedic doctor is in my near future.  Hopefully, a physical therapist, too.  At least I already know what is wrong from earlier imaging:  degenerative disc disease.  In the meantime, I’ll gradually increase my walking, stop picking up anything heavy, avoid hours in my recliner, use the ACE ice pack, and carry on.

Part Twenty-Eight: TMI

            Too much information.  Too little faith.  I was beginning to feel like Wonder Woman earlier this week (how quickly pride sneaks in) and now I’m the one that needs rescuing.

            The cancer support group serves a good purpose, but unfortunately one of the side effects is learning about post-cancer treatment health issues.  In other words, things I really did not want to know:  neuropathies, sleeplessness, post-surgery pain, radiation damage, and depression, to name a few.

            Adding in my heart’s desire to NOT do radiation, I did some preliminary research on cancer protocols for stage IIIb breast cancer in general and survival rates for triple negative cancer in particular.  Suddenly fear reappears. 

            With these extra two days off the chemo before starting the twelve-week regimen on Friday, I am feeling better than I have since treatment started at the end of June.  Doctors, nurses, and cancer survivors alike have reassured me that Taxol is much better tolerated than the Adriamycin and Cytoxan of the first two months.  However, the side effects sound all too familiar:  fatigue, achy muscles, and peripheral neuropathy.  All are features of fibromyalgia.

            I’ve never been good at the power of positive thinking, and right now all I can think about is if those chemo side effects will be intensified in me due to the fibromyalgia.  I want to believe that they won’t, but I’m not convincing myself. 

            But wait, there’s more!  (Suddenly those old barkers for TV product specials come into mind.  While I’m not about to sell you a bill of goods, there is something better to buy into than positive thinking versus fear.)

            There is the promise.  At the very beginning of this cancer journey, I told the Lord I really didn’t want to go on it.  His response was peace.  Time and again, Jesus has reassured me that he is carrying me through.  All I have to do is rest in him and take each day as it comes.  He made no promises about how difficult or easy the journey would be, but he promised he would see me through.  

            Ah, I feel the peace filtering through and dissipating the fear.  It’s true that I am not now nor ever will be Wonder Woman, but I don’t need to be.  Jesus, the divine superhero of the universe, is all I need.

Part Twenty-Seven: Shower Revelation

            “That’s it!” I exclaimed.  “Thank You, God!”

            There is something about showers and musing.  Under the steamy, refreshing flow of water—and who would have guessed how luxurious water streaming over a newly bald head feels—my mind wanders and ponders.  Well, after six weeks, my baldness isn’t quite so new anymore, but still the water feels good.  And there goes my mind wandering again.  I guess it’s not limited to showers.

            Anyway, after my shower I got ready for the day and then grabbed my NIV Study Bible, which has a pretty good concordance.  As is the case 98% of the time, I knew what I was looking for but didn’t know exactly where it was.  The entries under “comfort” yielded the result.  Later, after church, I spent some time on BibleGateway.com, reading the verses in various translations until I found the one that, in my humble opinion, said it best.  The New Century Version won the prize this time:

Praise be to the God and Father of our Lord Jesus Christ.  God is the Father who is full of mercy and all comfort.  He comforts us every time we have trouble, so when others have trouble, we can comfort them with the same comfort God gives us. (2 Corinthians 1: 3-4)

            I have heard other Christians talk about their “life verse” before.  I don’t know exactly what they mean by it, but I know what I mean.  And 2 Corinthians 1: 3-4 is mine.

            Hopefully, it is what I am doing at this very moment, writing away at the keyboard.  My heart’s desire is to share with others the hope and encouragement that God so graciously and generously showers on me. 

            Sometimes I bewail the fact that I am neither a big-picture nor detail-oriented person.  I fall somewhere in-between, which can feel like a pretty useless place to be.  Occasionally, I see the big picture, but have no idea how to get there; the details elude me.  I’m no vision caster, nor am I a vision implementer.  Instead, I operate in the present.  The here and now.  Today, minute by minute. 

            And now I am going to accept that as a blessing because it puts me in a place where I can live out what God has for me to do.  That is, be a comforter.  Share my present joys and trials with others to encourage them.  Point toward the God of all mercy, whose generous and limitless love showers down on every single person in this world, whether they recognize it or not.  Include the ups and downs, the doubts and fear and pain that are part of everyone’s journey. 

            Writing is not all of it.  Sometimes I am blessed to come alongside someone and listen to their story, really hear them.  They don’t need to hear my story; they need someone to fully engage with their story.  It’s an honor to be trusted to listen.  People usually do not want advice; they want to be heard and loved. 

            I’m the same way.  When I find that someone has read my story and it has touched them, I feel heard and loved and more than that:  grateful to God that my telling can bring His comfort.

Part Twenty-Six: It's the Little Things

            Walking through Walmart alongside Dana as I handed out rice puffs to one-year-old Josiah and snack crackers to three-year-old Joelle was my blissful workout Friday morning.  Later that day, I cleaned up my much-neglected kitchen and did laundry.  Still later, as I changed sheets and made my bed, I felt like myself again for a moment.

            One of the most distressing parts of chemotherapy and one of the hardest things to explain is how you stop feeling like yourself.  I tried to explain it to Dana the other day.  I had stopped by her church’s Monday night prayer service but had to leave almost immediately.  You see, their storefront church shares building space with a graphic T-shirt design store.  The chemical odor from the making of those T-shirts is overpowering at times.  My sudden departure was from the strong smell that night.

            However, it turned out that no one else noticed the odor on Monday.  To me, it was a frontal assault the second I opened the door.  That sharp chemical smell somehow embodies how I feel.  My mouth often has a bitter sting.  Nothing sits well on my stomach.  My body feels permeated with heavy metals.  My brain does not work as well as it once did.  Everything is different.  All the time.

            Except when God gives me little reprieves like this morning.  I went to the Saturday farmer’s market and found everything I came for:  zucchini, low acid tomatoes, peaches, and watermelon.  During my short time there, one of the vendors came out from her craft booth to give me an angel charm and tell me about her jewelry making class at Hopestone, the local nonprofit organization for cancer patients, survivors, and caregivers.

            From the farmer’s market, I decided to wend my way to a local gas station and stop at a few garage sales—something I have not had the energy to do for most of the summer.  The sales I ran across were rather pitiful and I bought nothing, but there was this:  getting out of my car in a lovely, wooded neighborhood, I drank in the sight of lush green trees and partly cloudy skies.  I felt the summer breeze brush against me and basked in the mid-70s temperature. 

            It is the simple things that bring me joy:  being with my family, having a moment of feeling like myself again, receiving the kindness of others, experiencing the touch of a perfect breeze.  I never want the bitter sensation of chemotherapy side effects to enter my spirit.  What I desire and what I experience in life’s simple joys are the “streams of living water” promised by Jesus and delivered through the Holy Spirit (Matthew 7: 38).

           

            

Part Twenty-Five: A Week Ago

            A week ago, my daughter and I were in Tulsa for my fourth chemotherapy treatment.  It was a long day as usual:  blood draw for lab work, appointment with my oncologist, and about four hours in the treatment room.  Each time I have had a different nurse, and each time she has been a loving follower of Christ.  Wednesday’s nurse was another gem.  When everything was done, she gave me a big bear hug and said to Dana and me, “You are a blessing.”  She was a blessing, too.

            That day already seems several lifetimes away.  On Thursday and Friday, I enjoyed days of relative well-being.  Too tired to leave the house, I was blessed with a visit and a meal from two different friends.  And then came the weekend from hell.

            Two days of enduring minute by minute.  Two days of feeling awful beyond measure.  Two days of being too exhausted to talk coherently, let alone read or do anything except endure.   I am not exaggerating.  I couldn’t even listen to soft music or pray anything other than “Help me, God.” 

            The malaise began to lift Sunday evening.  On Monday morning, missing my grandchildren so much, I managed the walk across the street to go see them.  Let me hasten to explain that my daughter checks in on me every day, brings me food, and is a great comfort to me.  But on the bad days, I cannot handle seeing my precious grandchildren, nor do I want them to see me so low. 

            Today (Tuesday) I did a brief errand in the morning and in the afternoon, spent the lunch hour with Dana and the kids, and had my son Joseph over to do laundry.  In short, I did too much.  This evening has been hard:  the sicky-icky post chemo feeling strengthened, and the stabbing pain in my back (thanks to some degenerating discs) has been excruciating.  An anti-nausea pill and a pain pill have quieted things down to a more bearable level.

            But I can listen to music again.  I can read again.  I can have nice long talks with God again.  I can drive my car.  I can receive precious hugs from one-year-old Josiah, three-year-old Joelle, and seven-year-old Benjamin.  I can be grateful that the huge spider I saw yesterday was already dead, though I smacked him with the fly swatter just to be sure. 

            And now I have a full week and a half until my weekly chemo begins.  I’ll walk the fine line between not doing enough and doing too much.  I’m thinking about starting a two-minute, five-times-a-day exercise program.  But, please, no spiders.

Part Twenty-Four: Two-Hour Time Limit

            This past week has been one of learning more about energy:  how much do I have, how will I spend it, and what activities spend it more quickly than others?  Honestly, over the years I have grown rather smug in my personal energy knowledge, but as with most things in life, there is always more to learn.

            If you are one of the boundless-energy-blessed people in the world, more power to you!  You may not even realize that you have so much energy.  Try counting your blessings every time you take a walk, do an errand, clean your house, get out with friends, work a job, enjoy a favorite hobby, or go on vacation.  Okay, enough for lists. 

            If your energy or mobility is waning, be grateful for what you still have—and use it and try to gradually increase it—but respect your new limits.  Okay, enough for unsolicited advice.

            My new energy package for outings seems to have, in general, a two-hour time limit.  With great joy, I exercised that limit on Sunday, attending church for the first time in a month.  It was wonderful to worship and to fellowship, even though I needed to maintain a handshake-free and hug-free zone to protect myself from germs. 

            During that time in church, I learned a few more things about energy usage.  First, the obvious:  walking and standing.  Oh, the joy of walking in the familiar north entrance down the hall, and into the sanctuary, talking with people along the way.  Oh, the relief to sit down on the cushioned pew and the discovery that the intersecting corner of pew back and side is a perfect place to support a weary body.  Yes, I gratefully slouched in the corner.  And once I sat down, I was not about to get back up:  I stayed put all the way through the service until the closing hymn.  As much as I like to sing hymns, I couldn’t get through a whole one.  Evidently, singing takes more energy than I thought, as does reading aloud.  And it was probably a good thing to have the hour of sitting in worship soaking up the singing, the readings, and the message before walking over to the coffee connection room to enjoy some more fellowship time.  Conversations take energy, too.  But all of these energy-takers are joy-givers.

            Back at home, I’ve learned to do a couple little things and then rest in the recliner for a while, maybe even doze, before getting up to do more.  I do what I can when I can—and that changes day by day, depending where in the chemo cycle I am. 

            I have more to write, specifically about yesterday’s treatment day, but I think it is time to move from computer chair to recliner.  And then maybe do something about my dirty dishes in the sink before the Neulasta pump delivers its medicine starting at 5:52 p.m.  After that, I’ll feel worse and recline some more, maybe listen to some praise worship and hymns.  For the next few days, I’ll stay in the house, having temporarily lost energy for outings, and look forward to some more two-hour time limits next week. 

           

Part Twenty-Three: Cope and Hope

            I’m getting tired of myself.  Maybe bored with my company, weary of all this focus on me and my cancer experience.  I’m definitely sick and tired of being sick and tired.  But the problem is that it seems all I can do is live through each present moment and write about it.  The writing helps me cope, and the writing helps me hope that I am helping someone.  But, to be honest, I’d much rather be at the beach.

            Instead, I am enduring the hundred-degree heat in my air-conditioned house.  On Tuesday, though, my daughter and I made the trek to Tulsa for two doctor appointments.  The air conditioning in my car is not nearly as good as in the house.

            We arrived early for the one p.m. appointment at Breast Surgery of Tulsa because we had anticipated slowdowns due to lunch-hour traffic.  Evidently, no one was going to lunch in the extreme heat.  I was not sure what to expect from this six-week check-up with Dr. LaNette Smith, who will do my surgery after I’m done with chemotherapy, but I knew I would enjoy seeing her.  She is the most compassionate physician I have ever met.  She carefully listened to my woes and discouragement and never once told me it wasn’t so bad.  That brought me so much comfort.  And then a more tangible sense of comfort came when she did an ultrasound examination of the tumor:  it is pulling away from the chest wall, which is precisely what is needed to be able to remove it.  For the first time, she said the word “lumpectomy” instead of “mastectomy,” and that gave me hope as well.

            We left her office with almost two hours to spare before my next appointment.  Fortunately, there is a Panera’s right down the road from her office.  Dana and I shared a meal and drank coffee to revive us for the rest of the afternoon.  In the company of my daughter, time passed quickly.  OCSRI was less than a fifteen minute drive down the highway, and we arrived there on the dot of three, I believe.

            I was there to see my nurse, Deb, who wanted to check how I was doing after the reduced chemo dosage of last week.  Dana and I reported on my miserable fatigue of the first four days after the treatment as well as the hopeful bits of feeling a little better and stronger on Monday and Tuesday.  Deb shows her compassion more in the mama bear sort of way, reminding me to keep fighting and not give up.  There is only one more treatment with this heavy-duty, hard-hitting chemo combination, and then come the twelve weekly treatments, which are usually better tolerated. 

            Wednesday was hopeful, too.  In the morning, I asked myself what I really wanted to do, and gradually shaved down the list to a manageable size.  I went out to eat a much-longed-for sandwich at Jude’s, dropped in on my pastor at the church, and then stopped in at Hopestone, where a perfectly lovely volunteer (and breast cancer survivor) helped me select five different turbans. 

            Later, when I left the house to give my son a ride (how wonderful it was to feel well enough to do that!) I drove off without anything on my head.  “Driving bald,” I thought, and started laughing—and turned around to go back home and put on one of those new turbans.  Still later, having supper with my daughter and her family and still wearing my new headgear, I answered my three-year-old granddaughter’s usual question, “Where’s your hair?” and let her pull up the back of my head covering to see and feel the back of my bald head. 

            Today (Thursday) I celebrated my 61^st birthday by going grocery shopping at Aldi’s.  It was a positively liberating experience.  Later this afternoon, a couple from my church are bringing me a meal.  In the evening, a friend is going to treat me to a delicious frozen custard.  And on Sunday, we’re having a family meal at Dana and Shawn’s house to celebrate my birthday and my son Joseph’s birthday (how can my “baby” be 31?). 

            It is beyond wonderful to have some days of feeling better after so many days of feeling lousy.  These days of hope help me cope.