Part Eleven: Context is Everything

            It was like living in a construction zone.  Or maybe it was a sword fight using steel pipes.  Besides the jangling of my nerves, my lower back hurt.  My shoulders hurt.  My legs hurt.  New pockets of pain appeared as the clanging and banging continued for a solid hour.  Next time I am going to take pain meds before submitting to an MRI.

            Holly was great company on the way to and from my appointment.  Especially on the drive back, I was grateful to be passenger instead of driver.  I was both rattled and exhausted from the hour on my back in the machine.

            Yet, I am so thankful for modern technology.  Here it is not quite 2 pm, and I have the radiologist’s report from my 9 am MRI.  If my back didn’t hurt so much despite the pain pill I swallowed once I got home, I would jump for joy.  No evidence of metastatic disease! 

            Alternating between the radiology report and Google definitions of terms, I inch my way through medical terminology.  It is clear to see that my back has arthritis issues with the biggest problems at T9-T10, though the rest of the thoracic spine is not in great shape, either.  So fibromyalgia is not the lone culprit of my pain.  Makes sense to me. 

            Funny how context shapes my reaction to results.  Finding out that my discs are degenerating and at least one is bulging is fantastic news.  I’ll take back pain over cancer spreading any day.  

Part Ten: The Time Between

            As I take a break from sorting through more of my mother’s files—and she kept everything—I have to laugh.  The file I just browsed through was labeled “Home Decoration,” and it was vintage Mom:  a collection of old greeting card fronts and cardboard calendar backs.  Yesterday I read through her Christmas letters from 1953 to 2006, keeping a copy of each one but tossing innumerable cards and letters from people I know and people I don’t.  I’ve looked through scraps of paper with grocery lists, phone numbers, home budgeting notes, and to-do lists; Medicare claims, doctor’s office visits, and hospital discharge instructions; bank statements, property information, trip expense ledgers, and receipts; yellowed newspaper clippings, old business cards, and 1970s articles on building dome and earth contact homes. And all that is from the first two of four drawers.

            Thus, the past few days I have been living in a type of time between past and present as I consider what the future may hold for me.  It has been a week since my bone scan and CT scan.  I have rested, reflected, and read, counting it a good sign that I was able to get lost in an absorbing historical novel instead of googling “triple negative breast cancer.”  I’ve spent time with friends, time with my grandchildren, time with my daughter and son-in-law, and time with my son.  (In fact, last night I actually won a Scrabble game played with my son.  The turning point was the word “snooze” placed on a triple word score.)  And thanks to the generous efforts of friends, I sit tonight in a clean house surrounded by a freshly mowed yard.

            In this in-between time, I’ve also had the plumber out to fix the stopped-up kitchen sink and slow flowing bathroom sinks.  That was Friday, just hours before my car decided it was not going to move in reverse any more.  That day’s happy surprise was a prayer quilt made by a dear friend.  Over the weekend, the cancellation of my Whidbey Island vacation plans for July was finalized.  On Monday, the Ford place fixed the transmission, covered by both recall and warranty, at no cost to me.

            Tomorrow morning my daughter takes me to my second MRI of the month—this time to check the T11 vertebra that lit up on last week’s bone scan.  Next week Dana will take me to my appointment with my medical oncologist on Monday afternoon and to my Tuesday morning port placement. 

            I am still in the easy, early days of this breast cancer journey, though the time since I discovered the lump—two months ago yesterday—seems like an eternity.  Sometimes I wish so much that I could call my mother and my sister to tell them all about what is happening, but neither one left me a phone line to heaven.  Mostly, I am amazed by the love showering down on me from family and friends.  And always, I am grateful for Jesus. Without him, I would be lost in more ways than one. 

            

Part Nine: Up and Down

            See Your Chart proves to be both bane and blessing.  It is the website on which I can access my medical records from Oklahoma Cancer Specialists and Research Institute (OCSRI, formerly the Tulsa Cancer Institute).  Having the actual reports—labs, pathology, imaging—with their detailed medical lingo is great for an information-seeker such as I.  Truth be told, I like deciphering the reports before hearing the simplified explanation from my doctors. Still, both ways of learning more about my cancer situation lead to ups and downs.

            Gosh, I’m sounding very detached and clinical here.  After yesterday’s bone scan at OCSRI and appointment with Dr. Smith at Breast Surgery of Tulsa, I have been emotionally and physically wiped out.  There was, however, the wonderful reminder and reprieve last night as I read and pondered Psalm 46:1

                        God is our refuge and strength,

                                    an ever-present help in trouble.

And there were also some hours of total exhaustion mixed in with plenty of dread.  Toss in some fine food and fellowship with Mona during yesterday’s hours between appointments in Tulsa, followed by the comforting company of my daughter from 6 to 10:30 am this morning, and you get an idea of how I’m spending my summer vacation.

            I’ve never had anything more than X-rays, mammograms, and ultrasounds, so three scans in one week has been a brand-new experience.  Naturally, every single one required an IV for some sort of contrast solution.  I had a good laugh with the bone scan technician when he asked me the required question: “Is there any chance you could be pregnant, or are you breastfeeding?”  Today, I almost panicked when the CT tech told me I had to drink two big Styrofoam cups of barium solution.  Fortunately, it was not the chalky white stuff about which I’ve heard horror stories.  Instead, it looked like and tasted like slightly dirty water.  But let’s get to the all-important results of the scans.

            Last week’s breast MRI showed the tumor, which is still less than 2 centimeters, but it has a worrisome little spike extending down close to the chest muscle.  The MRI also showed several suspicious lymph nodes.  Yesterday’s whole body bone scan revealed one concerning spot on T11, which may or may not be cancer.  (Thus, I will have a lumbar MRI next week.)  The bone scan also confirmed my theory that I have osteoarthritis—left wrist and both shoulders.  Today’s CT chest scan with contrast shows no sign of metastasis in abdomen or pelvis—hallelujah!  (Incidentally, the report did not include the exclamation “hallelujah!”  But isn’t it amazing that I can access the scan report the same day?)  The scan did show moderate degenerative disc disease at L3-L4, which explains some of the back pain and leg pain I’ve been wondering about lately.

            Summarizing the results here makes me realize that I’ve had good news as well as bad news.  Of course, there is more news to follow next week with the MRI, and even more news to follow within the month from genetic testing.  What does all of this add up to so far?  Chemotherapy first (hopefully to start soon, but I still need the appointment to have the port installed as well as a chemotherapy consultation with Dr. Moussa), followed by breast surgery, and then radiation therapy.  It is going to be a long haul.  I hope that by next summer I will be ready for a relaxing trip to Whidbey Island.

            

Part Eight: Neither Warrior Nor Worrier

            I do not understand why most everyone calls cancer a battle.  I get the idea that I am supposed to pit my will, spend my energy, and struggle on in a fight to win.  Frankly, all of that war talk simply exhausts me.

            Perhaps later in the journey I will feel like I am throwing every punch I can against the enemy, but for now, I’m not.  The idea of constant striving completely contradicts my current experience of a deep, joyful peace.

            The only explanation I have for serenity in the midst of a frightening disease is Jesus.  By nature, I am a worrier, not a warrior.  So worry should be dominating my thoughts and feelings.  Except that it isn’t.  Yes, I have moments of fear, but they always evaporate in the reality of God’s love. 

            I’ll admit that having cancer is no picnic.  Usually after appointments I am worn out.  I need a nap and quiet to restore both physical and emotional energy.  Eventually, I turn to blogging to record not just the day’s experience but also God’s faithfulness.  Every day He lifts my heart in worship and thanksgiving. 

            So why should I rage against cancer when there is no need to?  My Savior is waging the battle for me.  I am just following His reminders to worship, to relax, to receive, to rejoice.  There is enough to do with keeping appointments, improving my diet, and chronicling my journey.  I am savoring time with my family and friends, so thankful for all the blessings showering down on my life.  

Part Seven: Back and Forth

            So grateful to have friends who are early risers (unlike me), I meet Mona in the Food Pyramid parking lot at 7:30 a.m.  Today is my first appointment with medical oncologist Dr. Ali Moussa at the Oklahoma Cancer Specialists and Research Institute (OCSRI).  

            As we walk into the building, my first impression is that we have arrived at a festive airplane terminal check-in because of the bright yellow counter with the hanging “check-in” signs.  There is no chance to have to wonder for a second where to go.  At the check-in desk I receive my identifying bracelet and am directed to new patient registration.  I hand over the stack of paperwork I completed at home and my credit card.  In return, I receive the privacy statement and my stack of paperwork on a clipboard followed by my credit card and receipt. 

            I sit down in the front desk waiting area with Mona, and not two minutes later am summoned to a glassed-in office where I admire the lovely framed set of ribbon flowers on the wall and talk with the woman behind the desk.  (Too bad I’ve forgotten everyone’s names from today.)  She tells me it was a project she and her then-four-year-old granddaughter did together using all the different color ribbons representing different cancers.  After scanning my insurance card and driver’s license, she takes my picture and escorts Mona and me to the elevators and on up to the second floor where we wait in a bright, open area decorated in cheerful greens and pastel yellows.  The chairs are all cushioned and the curved couches look comfy, too.

            I am surprised when a medical assistant comes up to shake my hand and introduce herself, saying, “Glad to meet you, Janis.”  It takes a minute to realize that she has found me by my picture.  I get weighed—and I will spare you the details of those digital numbers—and we head on back to an exam room where she enters some information into the computer, checks my temperature, and takes my blood pressure.  She and the student who is shadowing her today leave, but within moments she is back, handing me a bright pink Rustic Cuff jewelry bag and a greeting card.  I pull out the pretty pink bracelet as she explains that 100 of them were donated to OCSRI for new breast cancer patients.  Wow.

            When Dr. Moussa comes in, he shakes hands with Mona and me and then settles down in front of the computer and my paperwork, asking me various questions about my health.  He talks over the biopsy report, explaining it shows a stage 1A cancer—over which I am very happy—looks at the sonogram and checks to see if the MRI results are available yet.  They are not.  He does a quick exam, and while he is waiting the few minutes for Dr. Smith to return his call for a brief phone consultation, he records my medical information on a digital recorder, referring to me three separate times as a “pleasant woman.”  He stops the recorder and smiles at me, saying, “That was the third time!”  I decide that means I am “triple pleasant,” a nice counter-note to having triple negative cancer.  He goes over what will come next: a blood draw today for a complete blood count and a breast cancer inflammatory marker.  Next week I will have a bone scan, a CT scan, and a PET scan.  Based on the information he has this morning, he says that surgery first followed by chemotherapy looks like the route to take after all. 

            Another medical assistant comes in after Dr. Moussa leaves and answers any questions I have, then escorts us back downstairs where I am to have the blood draw and stop at the scheduling desk for next week’s scans and a July 1 follow-up appointment.  The PET scan is not on the orders, so I figure that will come a little later.

            As Mona and I start the drive back to Bartlesville, she suggests stopping at Sprouts in Owasso.  What a great idea!  I love grocery shopping there.  While I am making decisions in the organic produce section, my phone rings.  It is an apologetic Angie from Dr. Smith’s office.  Evidently, the MRI results arrived after my appointment, and Dr. Smith has already consulted with Dr. Moussa via phone.  The MRI shows some lymph gland involvement.  My heart drops as I process this unwelcome news.  Good-bye, stage 1A.  Dr. Moussa’s office will be in touch with me:  the lymph gland involvement means we are back to the chemo first, surgery later scenario. 

            Mona is a good listener.  As we drive home, I talk and talk and talk, some of it serious, some of it silly.  The talking helps drain off my tension concerning the change in treatment plans.  Back at Food Pyramid parking lot, she helps me load my groceries into the car, and I thank her for the ride and company.  I hope I remembered to thank her again for the homemade essential oil products she gave me:  peppermint foot soak and lavender-lemongrass brown sugar body scrub.

            Back and forth, back and forth.  If nothing else, this breast cancer journey is going to teach me flexibility.  I am grateful that even though plans and schedules change moment by moment, I can rest in God’s care. 

            

Part Six: Post-Haste

            Waiting since Monday for the phone call that finally came Wednesday, I thought that Thursday would be relaxation day before Friday’s appointment with the medical oncologist. How wrong I can be!

            I could have gotten up at six a.m. but opted for a couple more hours of sleep.  Only after gazing at the clock, which read 8:38 a.m., did I remember it was only an hour till I was to babysit ten-month-old Josiah.  That spurred me on to shower before breakfast.  Just after 9 a.m. I checked my cellphone.  Three unexpected calls already.  After a flurry of return calls, I learned at 9:20 a.m. that I needed to be in Tulsa at Hillcrest Medical Center at 10:30 a.m. for an MRI.  Aagh! 

            My personal policy for this breast cancer business is to always have a driver because 1) I am a nervous driver in city traffic, 2) driving while distraught is never a good idea, and 3) another set of ears to take in medical information is always a good idea.  So when my daughter did not answer her phone, I called her husband.  “Shawn,” I said, “I need to be at Hillcrest at 10:30 for a mammogram.”  There went their breakfast date.  Shucks.  I’ve wanted to give them Thursday morning dates this summer, and already I’m cancelling the first one.

            Dana and Josiah and I were on the road by 9:45.   Shawn needed to stay home to finish up the last bit of bathroom demolition (they are putting in a new tub due to black mold behind the tiles) and to greet Benjamin when the bus dropped him off from summer school at 11:45.  We figured we would be back well before Joelle’s 2:45 pick up from Good Shepherd’s Child Development Center.  (She goes one day a week.)

            I learned this morning that my daughter is very capable of driving over the speed limit when necessary.  By 10:40 a.m. I was at Hillcrest’s registration desk.

            This was the first MRI I have ever had, so I was a little anxious.  The technician was wonderful, and the thirty minutes in the tube were not bad.  I could even hear the classic hymn selection that I requested coming through the headphones whenever there was a break in the clinging and clanging of the machine.  Naturally, there was a surprise blow-out of my vein in the first IV attempt before the MRI began.  (Only after it happened did I remember that my lovely protruding vein in my left hand has a history of blow-outs.)  Fortunately, the right hand was cooperative. 

            Afterward, Dana and I ate at Panera’s, which is conveniently located near the hospital, while Josiah enjoyed chewing on the highchair buckle more than eating his own food.    And then we drove home at a slower pace (I think) than on the way in.

            So tomorrow morning I will be on the road again, this time with friend Mona, for my first appointment with the medical oncologist.  Highway 75, here we come, but not post-haste at eighty like this morning.

            

Part Five: June 6

Psalm Reading

            It’s been probably eight years since I read through the Psalms.  And, if the truth be told, that probably is a good sign.

            You see, there have been a few times in my life in which I could not relate to any Scriptures except for the desperate cries and heartfelt pleas of the Psalms.  I was too shell-shocked and broken to relate to joyful praise.  I came to Psalms out of pure desperation and utter loneliness.

            On May 6, I started reading at Psalm 1 with a different set of eyes.  God has been so loving and gracious to me that joy bubbles up in my spirit as from a deep spring.  With more testimonies than ever before of God’s goodness, I am looking forward to all 150 psalms that express the gamut of human emotion and God-inspired devotion.

            It is June 6 when I come back to the above month-old writing.  That God-sourced joy continues to be my wellspring.  And I’ve learned a few things about “the peace that passes understanding” as well.  When Jesus said he would give us peace, he meant it.  I cannot manufacture such calm myself.  Yet, I’ve learned that I must do my part.  When fear tries to return, I turn to the psalms.  There is something calming about reading God’s Word out loud—it pushes panic away.  I am reminded that I am safe and secure in my Savior’s love.  No matter the outcome of this breast cancer, all will be well because of Jesus.

            Today I read Psalm 36.  There has been no plan, no certain number of chapters to cover; in fact, I thought I would be further along than I am now.  I know that I am still in the good, easy days before surgery scheduling and treatment plans.  Sometimes fear lurks in darkness, but worship restores the Sonlight all around.  Verse five is exactly what I need today: Your love, O Lord, reaches to the heavens, your faithfulness to the skies. The God of the Bible is the One I can trust. 

            The very second I finish writing the previous sentence, the phone rings.  The remaining biopsy results are in, and they are bad news:  triple negative breast cancer.  Yes, I am scared, but the God of the Bible is the One I can trust!

Fear Factor

            I email “Psalm Reading” in for my bi-weekly column in the church newsletter, sit back in my office chair, and shudder as the news sinks in.  I walk into the dining room and deep, heavy sobs shake me.  Five p.m. is just about the time my daughter’s family sits down to supper, but I call anyway, voice broken: “Shawn, please send Dana over.” 

Not two minutes later, Dana walks in through the front door.  I am sitting on the couch, sobbing out my fear and grief.  It is the first time I have wept in sorrow over the cancer. “There is no shame to crying,” I reassure myself in my mind.  I need the release.  I explain what I just found out, and my dear daughter hugs me to her shoulder as the storm passes.

            Dana has more questions than I have answers, but I explain what I know.  No mincing of words here.  I have triple negative cancer, which is the most aggressive grade of breast cancer.  Dr. Smith is referring me to a medical oncologist at Oklahoma Cancer Research Specialists Institute (OCRSI).  The likely course of treatment is chemotherapy first, then surgery.  I’ll get a phone call, probably tomorrow, setting up an appointment with Dr. Moussa.  My June 13^th appointment with Dr. Smith still stands.  Saint Francis Hospital is still working on insurance pre-approval for my MRI.

            I have been hoping for another week before the really hard stuff starts.  This morning was easy:  friend Callie took me to Tulsa for the blood draw for genetic testing.  It ain’t gonna be so easy from now on.  Dana and I talk for a while.  She asks if I want to eat supper with them, and I say no.  I need some more quiet time to process the news.  Instead, I accept her offer to come to their church’s Monday night prayer service.  She prays for me, and I send her on home.

            A few emails follow.  I find the OCRSI website.  I go to my medical insurance page but cannot find OCRSI.  Fortunately, I find Dr. Moussa on the list of network providers.  I click the link for details about him and practically melt with gratitude toward God when I see his sterling credentials.

            I am terrified, though.

Healing Prayer

            Even though organ music and traditional hymns are more my thing, I have learned to appreciate the contemporary music at New Expressions.  Of course, I also love hearing my daughter sing and play guitar. I hope to hold my ten-month-old grandson close to my heart.  He usually is quite the cuddle bug, but not tonight, so I take him back to the nursery to join his siblings.  My son-in-law, who normally leads the service, is back there taking care of the kids until help arrives.

            I am going to sit back and let the music flow over me.  After a short time, Ralph and Beverly, leaders in another small non-denominational church, stop in to share thanks with the little group for their participation in last night’s special service.  They are not staying for the whole evening since Beverly is coming down with a cold, but Ralph asks the group to pray for her, so they do.  Then I see Dana go up to Ralph and say something.  Sure enough, she has asked him to pray for me.

            I go stand next to Dana and the whole group gathers around me.  Ralph prays.  Beverly prays.  Just about everyone in the group takes a turn.  I am surrounded with love and healing prayer.  But most of all, I feel God’s holy presence filling me afresh with peace and joy.  The heaviness of fear evaporates.  I weep quietly, this time in response to God’s unconditional, freeing love.  I know I am safe in God’s hands.