Part Fifty: I Did It

            On Tuesday, I did it:  I drove to Tulsa by myself to get my BiPAP for sleep apnea.

            On Wednesday, I did it:  after spending a fun morning in downtown Pawhuska at the Pioneer Mercantile and a few smaller shops with friend Mona, I ate at Murphy’s for the first time, though I did not try their specialty, a hot hamburger.  For all my non-Bartian friends out there, a hot hamburger is a hamburger covered with fries and smothered with gravy.  (And a Bartian is a person who lives in Bartlesville.)

On Thursday, I did it:  I picked up my flute for the first time since last spring.  I played for less than five minutes and sounded awful, but it is a beginning.

These, perhaps, are not world-class exciting events, but they were important to me.  I needed to prove to myself that I can drive to big city Tulsa by myself since I may be doing precisely that five days a week for radiation therapy.  Plus, getting my BiPAP is exciting.  In case you don’t know, a BiPAP is like a CPAP, except that it delivers two different air pressures: one for inhalation and one for exhalation.  What that means for me is that now I breathe all night, which is way better for my health than stopping breathing 26 times in a single hour without even knowing it.

Going to the Pioneer Mercantile was a big deal because the Pioneer Mercantile is a new business established by Pawhuska’s own famous cookbook author, Ree Drummond.  I love looking at all kinds of pretty stuff I will never buy; plus, the cheese Danish I had upstairs in the bakery was awfully good.  And the other big deal about the day was that this was the first time Mona and I did something just for fun that was not tied to a medical appointment.

And playing my flute even for a few minutes reassured me that I will gradually get back to playing my flute again.  I’ve been so wrung out physically and emotionally through this long siege of cancer treatment that it was not an option.

I need a little bit of fun and lots of reminders that God will see me through radiation therapy.  It was easy once I was through with chemotherapy and surgery to “forget” about radiation.  I find that I am very tired of being a cancer patient—I guess I’m a patient with diminishing patience.  I want to be done, but I am realizing that when it comes to cancer, you are never completely done.  But I want to get to the place where cancer does not dominate my life.

Then I can say “I did it!” and be mostly done.

Part Forty-Nine: The Facts

            It was not what I wanted to hear. 

            I met my radiation oncologist Tuesday and suddenly things got real.  Too real.  How could I have forgotten those key details from my MRI last June?

            Besides the tumor itself, the MRI showed a few suspicious axillary lymph nodes plus a malignant internal mammary lymph node.  Dr. Nguyen reminded me of those details today and explained what they meant. 

            Axillary lymph nodes are in the armpit area.  Internal mammary lymph nodes are located underneath the ribs along the sternum.  The “complete pathological response,” i.e., “the cancer is gone” refers only to what was removed in surgery: the tumor area and single sentinel lymph node.  Radiation will not, as I supposed, only be directed to the surgical areas.  It will include the upper right quadrant of my chest to cover the axillary and internal mammary lymph nodes.  We surely do not want any stray cancer cells to be hanging out or spreading from there.

            Naturally, this more extensive radiation area means additional possible long-term effects such as an increased risk of lymphedema and the possibility of a small area of lung damage. 

            There are a few steps before radiation therapy begins.  I’ll have a CT scan and get tiny dot-sized tattoos that will serve as markers for my treatments.  Then Dr. Nguyen will plan the radiation therapy based on her analysis of the CT scan and my previous MRIs.  I will have 33 treatments:  at five times a week, that comes out to 6 ½ weeks. 

            About the time I finish radiation, it will be only a few weeks before I start quarterly visits to OCSRI-Tulsa to have bloodwork done and an appointment with my medical oncologist, Dr. Moussa.  (My port stays in for at least two years because 90% of triple negative breast cancer recurrences happen within two years of the initial diagnosis.)  There are bound to be follow-up appointments with my radiation oncologist as well. 

            Add to those appointments the ones for my other medical issues—high blood pressure, diabetes, degenerative disc disease, sleep apnea, and fibromyalgia.  My hope is that as the months and years roll by, there will be more news I want to hear than not. 

Part Forty-Eight: While I'm Waiting

            It has been two glorious months since my last chemotherapy treatment, and I’m ready to write about hair.

            My granddaughter Joelle likes to sniff my hair.  She says it smells good.  She also tells me it is soft.  And that it is growing.  She’s right, at least about the growing part.  The bald spots on the back have mostly grown in, and though my hair is somewhere between half an inch and an inch long, it stands up straight on the top of my head.  At first I had hopes that it would grow in white, but it keeps getting a darker gray. 

            My eyelashes are sparse and short, but my eyebrows have grown back in.  Though I never lost them completely, they were such a light gray that I couldn’t see them well.  Now they are thick, but it’s so nice to see ‘em that I can’t yet bear to tweeze ‘em.  However, I am the tiniest bit dismayed by my hairy face.  I don’t remember this much facial hair before, a soft, white down that graces my chin and cheeks and upper lip. 

            Though I certainly hope I will not become a bearded lady, I have looked forward to going gray for quite a while.  Kinda strange, I know, but that’s just how it is.  While everyone else was adding color to their hair, I was hoping to lose color.  Admittedly, though, I never anticipated having white facial hair.

            The other day I googled “facial hair after chemotherapy” and, sure enough, it is a common occurrence, often showing up a couple months after chemo and going away in another couple months.  In the meantime, I’m hoping Joelle does not start sniffing my chin.

           

           

            

Part Forty-Seven: Reminders

            Scrolling through my Facebook news feed, I saw a quotation posted by a Whidbey Island friend, Nancy, from Jesus Calling by Sarah Young.  If you’ve read any of Young’s devotional books, you know that she writes in first person—from Jesus’ perspective.  In her post, Nancy quoted the last three sentences of the December 5 reading: “Whenever you feel distant from Me, say, ‘Surely the Lord is in this place!’ Then ask Me to give you awareness of My Presence.  This is a prayer that I delight to answer.”

            I needed no further nudge.  Most of the time lately I have been spiritually numb.  Somehow, I’ve let go of prayer time again, and Bible reading has become duty rather than joy.  I’ve been slogging along, depressed by fatigue, neuropathy, back pain, brain fog, and the prospect of radiation. It’s embarrassing to admit because shouldn’t I be rejoicing continually that treatment was successful and the cancer is gone?

            So I put aside Facebook and asked Jesus to make me aware of his presence.  I wondered how he would do it and quieted my mind to listen and wait.  At once, the furnace came on, and with that noisy blast of air came the sense of the holy.  (No, I am not saying that God lives in my furnace vents!)  I heard the overhead sea shell chimes sing softly.  I thought about how Jesus is the sustainer of all things: “He is before all things, and in him all things hold together” (Colossians 1:17).  I marveled that he inhabits and surrounds his creation every second of every day.  His presence was sweet and strong, and my heart buoyed up with joy.

            By the next day, I had already let pain and discomfort sink me back into discouragement.  Late in the afternoon, though, God intervened.  A conversation with my daughter tugged at my heart, and back at home as I sat at the dining room table about to open my Chromebook again, I felt God’s presence.  He spoke conviction to my heart: a wordless sense that I should look for ways to love and bless other people instead of wallowing in my physical ills.  There was no accusation, rather, an all-encompassing sense of love and encouragement. 

            Both experiences reminded me of God’s generous grace.  When I experience his presence, it is pure blessing.  Many times in my life he has showered me with unconditional love:  love I could never earn; love that affirms, cherishes, and encourages; love that gives all lives meaning.  I keep sliding back into discouragement over pain and discomfort and limitations, but he blesses me anyway.  I want to live in his love and share it with others every day.

Part Forty-Six: More and Less

            Having successfully made the forty-mile drive from Bartlesville to Owasso, my first stop was at Sprouts, the grocery store I love.  My cart held only two items when a lightning bolt of pain struck my lower back.  Suddenly I could barely walk.  Excruciating jabs and stabs accompanied every step.  I was determined to pick up the items on my list; after all, I had 45 minutes until my doctor’s appointment.

            I took mincing steps and frequent stops in the attempt to dampen the pain.  I adapted and shortened the shopping process accordingly:  no stooping for bottom shelves and no random browsing.  Fortunately, somewhere between the bakery (I never even try to resist buying those yummy flax muffins) and the check-out, the pain dimmed down.

            It’s a good thing it did because I got to Bailey Medical Center a little late and had a hard time finding the sleep clinic.  Twenty minutes before I had been barely limping along, and now I was walking at full pace.  But arrive there I did, and as it turned out, filling out the last bit of paperwork took longer than it did the doctor to decide he would refer me for a sleep study.  From there I drove home, my lower back complaining about the gas pedal and brakes--and relaxing when the cruise control was on. 

            It is true that I over-exerted myself that morning:  I sorted out and straightened up my shoes, bagging up the ones I have not worn for a year or more.  That involved a lot of bending, which I guess was not such a good idea.  But I am supposed to be exercising more, and cleaning up the closet floor felt like exercising.  Diet and exercise, my primary care physician said at my check-up last week when the finger prick blood test revealed I am borderline diabetic.   

It’s looking like self-care and medical appointments will continue to keep me busy now that the end of cancer treatment is within view:  Eat less (count those carbs), walk more, see a specialist regarding my spine, do a sleep study, and start radiation therapy sometime soon.  In addition, make appointments for what got delayed during cancer treatment:  dental check-up, eye exam, and colonoscopy.  See my oncologist and radiologist next week, my surgeon in six weeks, and my primary care physician in three months. 

And in the meantime, no more bending, lots of walking, and less muffin-eating.

           

            

Part Forty-Five: Cancer in Three Tenses

            The other day I found myself talking about cancer in past tense.  It surprised me.

            Yes, cancer is past tense in a significant way:  a squeaky clean pathology report showing no evidence of cancer.  None in my breast and none in my lymph nodes.  The chemotherapy did its job.  It may be more accurate to say that the chemotherapy was so successful because of many people’s prayers.  God heard and answered those prayers.  I am grateful.

            Yet, cancer is still present tense in a significant way because radiation is the next step in the cancer treatment protocol.  About six weeks of radiation, five days a week is the standard.  The blessing is that I will receive those treatments right here in Bartlesville.

            In some ways, cancer will continue to be both past tense and present tense in the future.  I have some scars to prove it, though I don’t plan to show them off!   There are also lingering effects from the chemotherapy, such as my increased memory glitches and occasional peripheral neuropathy.  My hair is growing in gray:  believe it or not, I’m excited about that!  However, the white chin hairs I discovered looking in the bathroom mirror last night are not nearly as exciting, and I wonder if my eyebrows will ever look the same.  The sole lymph node removed in surgery gives me a slight chance of developing lymphedema (persistent swelling) in my right arm.  And the radiation . . . well, I hope it will leave nothing but a memory.

            There are larger, more important impacts that I hope never dissipate.  A deeper experience of “the peace that passes understanding.”  A new understanding of what people with cancer go through, a new compassion for their suffering, and a new appreciation of their courage.  More gratitude and joy in things that can easily be taken for granted, such as getting out of the house, taking a short walk, driving my car.  I don’t ever want to forget that all of life, even the insignificant moments, is precious.  I want to be thankful always for what I have and never begrudge what I do not have.

            What I am most grateful for is that God knows what the future holds.  In the last six months I’ve learned, more than ever before, that I can put my trust in Him.  No matter what.

Part Forty-Four: Complete Response

            Today (November 22) is another landmark day, a pre-Thanksgiving Tuesday I will celebrate for years to come.  It is the day I received the two best words a breast cancer patient can receive from her surgeon:  complete response.

            Complete response means that the pathology report from last week’s lumpectomy and sentinel node biopsy was negative.  In other words, I am cancer-free!  All that remains is radiation.

“Wait a minute,” you say.  “Why do radiation when you are cancer-free?”  That has been my question for months.  I was sure that if I was declared cancer-free I would never consent to radiation.  Today, I asked Dr. Smith what would happen if I did not do radiation.  She knelt down beside me and said, “Without radiation, the risk for cancer recurrence in your breast is thirty percent.  With radiation, the risk for recurrence is fifteen percent.  Why stop treatment now when you have all the hardest parts behind you?”  Her facts, the solemnity of her tone, and the look of compassion and concern on her face sealed the subject for me.  Besides being a highly skilled surgeon, she is an incredibly compassionate woman who is invested in the well-being of her patients.  She wants the best for me, and she has the knowledge and experience that give her words great weight.

            Thus, I am saying yes instead of no.  

Part Forty-Three: From Worst to Best

            I was prepared for the worst.

            And only now do I realize why:  Because of being so sick all summer from the “red devil” chemotherapy.  Because of the pneumonia that landed me in ICU over Labor Day Weekend.  Because of the peripheral neuropathy from the Taxol.  It’s been a rough road.

            I was supposed to be rejoicing over the death and disappearance of my tumor.  And I was, except that I was having such a hard time with the neuropathy.  And then the week before surgery, I was struggling emotionally with the information about lymphedema and physically with severe joint pain from being off my anti-inflammatory medication. 

            I read up on lumpectomy recovery and also remembered recovering from my dislocated shoulder in 2004.  I was prepared to be helpless and in lots of pain.  Thankfully, oh so thankfully, that is not what happened.

            But let me go back to the day of surgery for a moment.  My daughter drove me to Hillcrest, and we settled in to wait in the pre-op area.  The pale purple disposable hospital gown and dark purple slipper-socks cheered me (I mean, who doesn’t like purple?).  The IV insertion in the back of my left hand was surprisingly painless.  The nurses were very nice.  My surgeon, Dr. LaNette Smith, came to check on me and to ask if I had any questions.  Naturally, I could not think of a single one.  Then she surprised me by asking, “Would you like me to pray with you?”  She and Dana and I joined hands, and Dr. Smith prayed.  How her presence and prayer comforted me!

            After some more waiting, a nurse escorted me into the surgery room.  The anesthesiologist put a mask over my nose, and I expectantly waited to get sleepy.  I didn’t.  I was sure to keep my eyes open as a signal that I was awake, and then the next thing I remembered was waking up in the recovery room. 

            The surgery was both brief and successful.  The only difficulty was getting me intubated, but my throat doesn’t even hurt.  Dr. Smith took out the tissue where the tumor had been as well as a single lymph node.  The most uncomfortable part after surgery was how tight the binder was. 

            Recovery this week has been a bit of a lark.  I am more comfortable, physically speaking, than I have been in weeks.  My arthritic joints are rejoicing with the return of Celebrex.  The discomfort from the incisions is well managed by Tylenol #3.  I’m hanging out at my house with daily visits from church choir members and Bible Study Fellowship friends who signed up to check in on me when my daughter could not.  (I’m not yet ready to face the probability of a grandchild bumping into my sore spots.) 

            Next week I hope to receive the pathology report at my post-op appointment.  Naturally, I’m hoping for the best. 

            

Part Forty-Two: No Matter What

            I meant to blog last week.  Really, I did.  But I felt so bogged down by American politics that I didn’t.  I spent lots of time reading news articles, trolling Facebook, and using fact-checking websites.  The mudslinging on social media and in the press depressed me.  Silently disagreeing with my family and many friends--and, evidently, most of Oklahoma--about the presidential race depressed me more.  I stood with Christian leaders such as Max Lucado concerning their opposition to Donald.  I voted for Hillary.

            But America has made her decision now, and it is time to move on.  Today I am especially grateful that my lumpectomy is this month instead of in January.  If president-elect Trump does what he has promised concerning the Affordable Care Act, I won’t be able to afford insurance for 2017.  It seems ironic that a presidential election could well be the deciding factor concerning whether I receive radiation treatments in the new year or not.

            But let’s stop thinking about presidents and policies.  I’d like to go back to my little world of triple negative breast cancer, wildly successful chemotherapy, and next week’s surgery.  Last week the peripheral neuropathy began to lift a little.  It’s not 24/7 anymore.  I get breaks from it for minutes or hours at a time now.  That is a very big blessing.

            On Monday, I followed doctor’s orders to stop taking Celebrex, which is an anti-inflammatory medication that keeps much of my arthritis and fibromyalgia pain at bay.  Let’s just say that my joints and my muscles are complaining loudly every minute of the day.

            On Monday, I also had my pre-op appointment followed by a lymphedema specialist appointment, both at Hillcrest where my outpatient surgery will be.  I came away with a plastic hospital bag filled with copies of completed forms, pamphlets, pages of information, and pre-surgery cleaning wipes.

            Not having had much experience with surgery, I had no idea how extensive a pre-op would be:  filling out forms, answering questions about my medical history, listening to the nurse’s pre-surgery instructions, having an appointment made for December with a sleep specialist because I am high risk for sleep apnea, and having an EKG and a chest X-ray. 

            Then Alice (my neighbor who provided transportation) and I had just enough time to eat lunch in the hospital cafeteria. (It was far better than the food I ate as a patient back in September.)  From there, we went over to the third floor of the Women’s Center where I met with the lymphedema specialist.  That’s where my education really began.

            I learned that the rest of my life will be spent in prevention of and/or dealing with lymphedema.  My right arm has been the favored one for many years due to ulnar neuropathy, tendinitis, and the lingering results of a shoulder dislocation.  I get to favor my arm even more now, protecting it from cuts, scratches, bug bites, and heavy lifting.  No more heavy purses dangling from my right shoulder.  No more blood pressure cuffs or blood draws from my right arm.  Careful surveillance of the right upper quadrant of my body for any swelling, and immediate reporting of such to my breast surgeon.  I learned that stage one lymphedema is when swelling is short-lived, and that is where you want to stop it with appropriate treatments.  You see, lymphedema is progressive, and once you go past stage one there is no return.  At stage two (continual swelling), you must wear a compression sleeve pretty much all the time.  Thus, it is important to prevent lymphedema from ever progressing.  The best thing, of course, is to try your hardest to prevent the lymphedema from ever beginning.

            So please forgive me if I am a little overwhelmed right now.  I’m trying to do a few things around the house to prepare for recovery from surgery, and at the rate I can work, they will not all get done.  I’m in constant pain now with the prospect of post-op pain to follow.  At least the post-op pain will be in different places: the incisions in my breast and armpit.  And I’m wondering how much medical stuff I can cram into December while I still have 100% coverage.

            Last night’s Bible Study Fellowship lesson was from John 6.  The feeding of the five thousand reminded me of Jesus’ compassion and generosity.  I could relate to the raging storm on the Sea of Galilee, the disciples in the boat struggling with the waves, and their terror when they saw Jesus walking toward them on the water.  I’ve been in the storm of cancer for almost six months now, for the most part sustained by “the peace that passes understanding,” but sometimes stricken with terror.  “Don’t be afraid,” said Jesus to his disciples.  “Don’t be afraid,” he says to me.  I don’t want to be afraid.  I want to trust him completely all the time, no matter what. 

           

            

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.

Part Thirty-Three: Reprieve

            Late morning sunshine, blue skies, and cool breeze welcomed me to walk down the block.  After months of humidity-laden heat and sickly-feeling body, those few minutes following the sidewalk felt like freedom. 

            Later in the day, I found myself on the floor playing with fourteen-month-old Josiah.  He stood before me, tottering just a bit as he clapped his hands.  When I clapped my hands, saying “clap, clap, clap,” he burst out in laughter.  Grandma really is a funny playmate.

            I love feeling normal.  I never used to think about it much, the unconscious ease of doing daily stuff. 

            The first few months of chemotherapy took away the sense of feeling like myself.  It’s hard to explain when nothing feels right.  It’s more than the bitter, metallic taste that lingers in your mouth or the weird, sick feeling that defines your body.  It’s the indefinable but very real sense that somehow you are not the same, almost as if an alien has abducted your very self and replaced it with a counterfeit.

            But now, a reprieve.  I’d call it a combination of getting used to the impact of cancer, having a little break from some of the side effects from chemotherapy, and appreciating things that never occurred to me before.  As always—even before the cancer, during periods of wellness midst the fibromyalgia—I begin to take the reprieve for granted almost immediately instead of regarding it as a gift to be cherished.

            But, right away, reality returns.  Yesterday’s ache in my left knee and weakness in my legs, this morning’s stabbing pain in my left index finger and worrisome scratchy throat.  Back pain, fumble fingers, shoulder stabbing.  They are either side effects of Taxol or reminders of fibromyalgia.  Nothing too bad yet except the fear of everything getting worse.

            I, however, do not want to live my life in fear.  I’d rather live my life in gratitude.  Instead of dwelling in the uncertainty of what may yet happen, I’d rather dwell in the reality of the present, where Jesus helps me choose joy.

He who dwells in the shelter of the Most High

will rest in the shadow of the almighty.

I will say of the LORD, “He is my refuge and my fortress,

my God, in whom I trust.”  (Psalm 91:1)

Part Thirty-Two: The Art of Communication

            My fourteen-month-old grandson, Josiah, has a melodious voice.  Such happy emotion and inflection go into his incomprehensible baby babbling.  I get the feeling that he is speaking in sentences already; it’s just that we don’t understand the content.  Yet there is one particular word which he pronounces with great gusto.  He loves to say it, and he loves to have it repeated back to him.  This word does not seem to be connected to any object or meaning other than his pride in pronouncing it:  guck.

            On the other hand, three-and-a-half-year-old Joelle has a lot of information to convey. She likes to repeat important facts and relevant questions as much as she likes to keep everyone current on what she is doing, thinking, pretending, and feeling.  There are two things I can count on every time I see her.  She will come up to me, carefully touch my turban, and ask, “Grandma, where did your hair go?”  Then, she lifts my head covering with a finger, touches the fuzz on my head that has never fallen out, and proclaims, “You have tiny hair!”

            Benjamin, at seven, prefers action communications.  Ever hoping to watch a video, he slyly smiles at me and hands me the remote.  When he wants to go home with me, he grabs my hand and escorts me to the front door.  And when he wants me to sing his favorite song, “The Wheels on the Bus,” he personalizes the sign for “please”:  instead of rubbing his palm across his tummy, he rubs it across mine.  When he was a baby, he went through a period of time in which his favorite vocalization was “blah, blah, blah.”  Oh, and he also roared like a lion when I picked him up.

            It makes me happy that my grandchildren like to communicate with me.  I also like to remember how my own two children expressed themselves when they were little.  Joseph had his own unique gibberish that sounded like rapid-fire Chinese.  Dana, on the other hand, was precise in her communications, using fully understandable sentences at an early age.  There was a single exception, one made-up word that served a dual purpose.  “Ma-mu,” or perhaps I should spell it “Ma-moo,” was her word for apple and for mother’s milk.

            This second week out of the hospital has been a rather long one because I’ve kept away from my family due to Dana’s nasty cold.  I miss my grandkids mightily.  It’s also been entirely too long since I’ve had the older two over to my house—all summer, in fact.  What I want is enough energy to have them over one at a time.  Benjamin could jam on the piano, go grab his See ‘n Say out of the toy room, and take it to the kitchen where he loves to sit on the floor and croon.  I long to cuddle up with Joelle on the couch to watch a silly episode of Peppa Pig on my computer, followed by looking through my jewelry box and trying on necklaces and bracelets.  Then I could cut some frozen grapes in half while she gathers the necessary plastic lids and containers for our fruit-eating.  The plastic outnumbers the grapes, but I trust that there is a three-year-old logic driving her routine.

            However, having my grandchildren over, even one at a time, might be delayed for some time.  Already, I’m experiencing the expected side effects of Taxol:  fatigue, muscle and joint pain, and peripheral neuropathy.  It’s pretty much like having a fibromyalgia flare.  It’s discouraging to think about the next ten weeks of treatments, because chemo side effects tend to worsen as time goes on.  Oh, well.  At least this is familiar territory, and because today I spent several hours collecting a week’s worth of grandchildren hugs, I will be fine until tomorrow.

Part Thirty-One: Sicker Than I Knew

I was pushed back and about to fall,

but the LORD helped me.

The LORD is my strength and my song;

he has become my salvation.

(Psalm 118:13-14)

            I did not know how sick I was.  True, I wondered if I could get out of bed.  True, my fever was back up over 100 again.  And, true, I felt horrible.  But I did not know I was short of breath.  And I did not know I had pneumonia.   

At Jane Phillips that Friday night, I opted for a wheelchair to get me from car into ER.  My daughter and I waited for what seemed a long time, but once the intake person found my blood oxygen level to be a mere seventy, I got wheeled back into a cubicle and hooked up to oxygen fast.  Then the wheels of ER turned more slowly, and it wasn’t until 3 a.m. that I was loaded up in an ambulance to take me to the Oklahoma Heart Institute ICU at Hillcrest.

This was not how I had planned on spending Labor Day Weekend, but I was in good hands.  The staff was amazing, providing excellent care, professional competence, and loving compassion.  Antibiotics and steroids, tests and more tests, and breathing treatments filled each day.  On Tuesday, I was moved from the cardio ICU to the ninth floor oncology unit and no longer needed oxygen.  On Wednesday, the physical therapist got me up and using a walker.  On Friday, I was discharged. 

So here I am at home, grateful to sleep in my own bed without the interruptions of blood draws, breathing treatments, and vital signs checks.  Earlier this summer, I often felt like my home was a prison.  Now, after three days in ICU and four days in a regular hospital room, my home feels like freedom.  Breathing on my own, walking on my own, and regaining strength are precious gifts I did not know that I should cherish.   

I never knew it was possible to be so very sick and not know it.  It makes me think of how spiritually sick and lost we can be without knowing it.  It makes me more grateful than ever before that Jesus is our great physician.  He gave his life for us.  Not only do we have the promise of eternal life, but we can have abundant life in the present, too, no matter our circumstances. 

You are my God, and I will give you thanks;

you are my God, and I will exalt you.

Give thanks to the LORD, for he is good;

his love endures forever.

(Psalm 118:28-29)

Part Thirty: 101.3 and it ain't no radio station

            Finally, after waking up every hour all night with body aches, at 4:45 a.m. I started to wonder if I had a fever.  I did:  101.3.  I took the Levaquin first and then called the triage nurse.  And then took a Tylenol #3 (I don’t have any of the regular stuff) and a muscle relaxant and went back to bed.

            This is day five with muscle spasms of the back and legs.  It started before my chemo on Friday and has not let up much since.  I move very carefully.  Sometimes all movement is excruciating, and sometimes it is not.  I can sit at the dining room table or at my computer.  Last night I figured out that with the heating pad I can sit in the recliner for a while.  I am not having fun.

            But late Wednesday morning I was able to bend enough to finish unloading the dishwasher and fill it back up with dirty dishes.  That was not necessarily a smart move because my back is starting to spasm again. 

            I do not understand what is going on.  Is this pain the fallout from degenerative disc disease or from chemotherapy?  What caused the high fever?  When am I going to feel better?  My world is shrinking again.  And tomorrow, Friday, is another chemo day.

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.