Blooming Flowers

Early Spring blue bells after drenching rain.  Often the first flower in bloom.

Three varieties of rocambole and stiff neck garlic.  Yum.

Today was another day of chemo.  I had started writing prior to going, hoping that I would finish when I was there.  But I shared a room with a very pleasant lady who seemed to need to talk.  So I listened, encouraged, and supported.

Now my head is foggy from medicines and my thoughts, which really need careful articulation, are not forthcoming.  Perhaps tomorrow.

Today's Journey Joys:  blooming flowers, friends providing amazing meals on chemo-day, Ben being inducted into the National Honor Society, medications which help the tummy be not so rumbly, garlic bursting through the mulch.

Ah.... not doing so well

On Tuesday, as you probably recall, I had my first round of Adriamycin and Cytoxan. No problems getting it although I did pee pink the first time I voided (the Adriamycin is red).  After about three hours I went home and all was well.

Today is Monday, and although my energies which I put into planting, painting, and re-staining the deck this past weekend probably are part of the problem.... I, ah....well, I don't feel so well today.  My joints and marrow hurt - literally.  The chest is tight; the heart periodically palpitating; the stomach goo-ey; and the mouth metallic and without taste buds.  I am weary I think.  Tears come to my eyes in a moment. Any moment.

I can deal with the nausea and the fatigue.... it's the pain that has me laid low.  I'm such a wimp.

I took an hour nap today which was comforting at the time... yet the discomfort persists and worsens.  How can I do this well?  How can I respond with grace and love?  How can I be "rejoicing always"?

"I want my smiling mommy." Ally announces at the kitchen table this morning.  And I force a smile.  It takes a lot of precious and sparse energy.  But I do it and she smiles back.

Today's Journey Joys:  beautiful rain on just planted potatoes, Ben getting a 35 on his ACT at 15 years old, Ally girl dodging rain drops, soaked feathered chickens, turtle pie, no mouth sores.

For Michelle

My dear Michelle,

It was a lifetime ago, when I was just fourteen or fifteen, with just divorced parents, and living in a new small town.  And you were born.  First daughter to my oldest sister.  A joy and delight.  A curious wonder of exploration and engagement.  And I was privileged to babysit you after school.  I loved being with you.

You would giggle with those massive blue sparkling eyes and toothless grin.  Your belly jiggling and your arms a’ flapping.  Your favorite word?  “Cookie” of course.  I could never give you enough cookies.  (Don’t tell your mom, but I think between you and me we often emptied the cupboards of nilla wafers.)  I would attempt, and I mean attempt, to feed you that nasty tasting vegetable your mom insisted I give you.  And of course it wouldn’t go in that delightful mouth.  As if you were saying, “If you want sweetness coming out of my mouth, then only sweetness can go in.”  So consequently you would burple and spray the orange pasty stuff all over me, yourself, and that high chair. We would laugh and laugh.  Sometimes to the point of happy tears.  Good memories Michelle.  Ones which I took with me when I started my own parenting.  You taught me much in your early days of journeying.

A couple years later you and your mom and dad moved to the country and a neighbor lady cared for you during the day when your parents were away at work or school.  I do not recall her name.  But I remember her as the lady that taught you about Jesus.  About how he loves the “little children” and how he wants to know you and you to know him.  And although your parents did not appreciate the gift of Jesus this lady was offering, I am deeply grateful she was there, early in your life, to at least give you some knowledge (understanding maybe?) of Jesus. 

Why do I reminisce about days more than thirty years ago? 

Michelle, your deep, breathless, stomach-socking, mind-numbing journey you are embarking on has me aching… longing for you to find something, find Someone, to hold on to.  Your precious dear son – diagnosed with Ewing’s sarcoma – an aggressive primary bone cancer.  Two weeks ago your word was filled with laughter, joy, curiosity, and thoughts of motherhood.  Today, you have pain.  A suffering pain to the core of your mother’s soul. 

I know the cancer Road.  At least some of it.  It is scary, unpredictable, life altering, priority changing.  Your little guy will experience the hard road so much earlier than most.  And your mother’s heart may feel tortured and beaten. 

Every fiber of your being wants to protect your children. 

Every fiber.

Michelle, God may not explain the “why?” of these times.  Knowing the why I believe may not even help.  But what I do know is that God says that regardless of where you are, regardless of what you are experiencing, regardless of the pain, deep and penetrating, that He is and will be with you. 

Grab Him.  Hold tight to Him.  Embrace Him like you will never let go. 

Having Jesus with you during this journey does not guarantee that you will see the cancer go away and your son healed.  I wish it were so.  But it does not.  But, my dear Michelle, God is not afraid of your hurt, your fury, your disbelief, your terror.  Tell him.  Share it with Him.  You will find grace with Him.  And I am confident that you will be strengthened deep within.  That elusive peace, so often hard to experience in a cancer journey, is found by holding on to Jesus. Not positive thoughts, not wishful thinking, not linking to the great universal power. But to Jesus.  Grab hard Michelle.  And when you lose strength, when you lose heart, when your tears have saturated your pillow and your head is throbbing from holding your breath, know that even through these times, though you feel like you can hold no longer… know that He is holding you. 

Has been all the time. 

Talk to Him Michelle.  Begin this journey with Him.  

He will never let you go.

Today's Journey Joys:  medicines for cancer, family who loves deeply, prayers for Michelle and her beautiful family, bees flying, grace-giving God.

"Who shall separate us form the love of Christ?"  (Romans 8:35)  Nothing.  (Keep reading Romans 8:35-39...not even cancer or sorrow can.)

The words do not come...

I'm back home.

On Monday I drove four and a half hours to Rochester to have an echocardiogram, an oncology check up, and three consultations with surgeons and radiation folks.  My head is spinning.

My heart is physically fine.  And so I can continue with the therapy.  A most amazing relief.

Surgery is tentatively scheduled for July 1st.  Bilateral mastectomy with reconstruction.  Plastics doc says I don't have enough fat on my body to use "me" to reconstruct so I have to go with implants.  Radiation follows four weeks after surgery.  Radiation and reconstruction are not good bed fellows. My homework?  To find out if the local radiologists can do some technique called "breath hold radiation".  It is supposed to reduce the exposure of radiation to the heart (and lungs) especially for left sided breast cancers.

I missed my family dearly.  My husband, my son, and my daughter. Even the cats.  I am so grateful  to be home.

I have much to consider.  Deeply thoughtful and reflective.  The Journey seems to be taking a turn....

Today's Journey Joys: journey mercies, strawberries growing, chickens cacklin', warm windy day, food prepared in the refrigerator (thanks Burt!).

Reflections

I started writing this little note today with thoughts of communicating my weariness of the weekly side effects of paclitaxol and other chemo agents.  But when I read it, it sounded so much like complaining and carking.  And the last thing I want to do is to be ungrateful, unthankful, or cynical.  This medicine is making me better, right?  So I highlighted and deleted the whole miserable thing.

I slept so well last evening.  Thank you for praying.  It was the best night of sleep I've had in weeks.  Perhaps it was the pitter-patter of our first big spring rain.  Or the distant rumble of deep thunder.  But I slept well.

I have completed what I've termed "round one" or "phase one" of my treatment.  Four cycles of Herceptin and Perjetta accompanied with twelve straight weeks of paclitaxol.  Next Monday I travel to Mayo for some heart tests and consultations with oncology, general surgery and plastics on Tuesday.  It is during this visit when I need to decide between single or bilateral mastectomy, timing and type of reconstruction, and even whether I want to have the mastectomy surgery done there or locally.  These are huge decisions and I am feeling overwhelmed.  How can I know what is best?  I really don't like any of the options (ok, I'm carking again).  I am conflicted between having surgery here and staying close to my family and getting, what I believe to be, exceptional care at Mayo, four hours away.  And I am frightened by being alone for surgery.  But perhaps Farmer Husband and family can take a few days of vacation this summer and visit the Cities while I'm hanging out in Rochester.  I'm catastrophizing over nothing probably.

I'm just trying to do the best thing.

And the Road has so many forks.  And once down one, the others are closed or not clear to traverse until much further down the path.

What I do know is that after I get back from Mayo next week I will have a few days before "round two" starts.  This chemotherapy regimen is comprised of dose dense Adriamycin and Cytoxan.  The folks at the infusion center tell me this cocktail is a little harder.  More nausea, fatigue, and gastrointestinal side effects.  Likely to have some shifts in my blood counts - white blood cells, red blood cells, platelets, protein, and hemoglobin.  Some of these counts are starting to fall already after these first twelve weeks.  But for the most part they have been very close to "normal".  Dr. Ch. says she will also give me a shot of Neulasta to boost my immune system.  This too has some side effects. And in the midst of the first cycle of this new medicine I must travel for work for a few days.

"Fear not for I am with you.  Be not dismayed for I am your God.  I will strengthen you, I will help you.  I will uphold you with my victorious right hand."  (Isaiah 41:10) - a verse which keeps rolling in my heart and mind. And a reminder that, "Never once, did you ever walk alone..."

https://www.youtube.com/watch?v=Ocd8mbGNxdI

"Wherever Jesus may lead us, He goes before us.  If we know not where we go, we know with whom we go.  With such a companion, who will dread the perils of the road?  The journey may be long, but His everlasting arms will carry us to the end." ~ Spurgeon

Today's Journey Joys - slow soaking rain on just-planted onions, friends for lunch dates, tomatoes almost ready to plant, new carpeting in the other house - warm on the toes, restorative rest.

Yourself, in third person

I’m sitting in the glider rocking chair in my living room, gliding back and forth, attempting to focus on my student’s papers.  I’m on the 26^th paper… all about the same case study.  Something about a 45 year old woman who injured her knee while she was playing kickball with her 4^th grade students during recess…And I read all about the injury and circumstances surrounding it – all 26 times.  I read about her past medical history, her family history, her review of systems…. And on and on and on.

And the phone (thankfully!) interrupts my work.  “Hey Chris, it’s Kathy. “  “Are you up to going to a CEU presentation?  Dr. Ch. is presenting a talk on HER2 positive breast cancer – neoadjuvant therapy.  It starts at noon.”   It’s 10:45.

Hmmm… I think.  Well, I know a little bit about this subject….and I always need CEUs – and free ones are always a plus.  Besides, it might be nice to learn more about what my oncologist knows about my cancer.  So since I was already showered.  I figured, “why not?”  Mind you, it took me twenty minutes of rumination for me to come to that conclusion though.

I throw my wig on and then zip through town racing to get there on time.  And thankfully find a parking spot right at the front door.  Kathy greets me as soon as I’m in the building.  We sign in and she grabs the catered lunch.  I grab a Sierra Mist for sipping as Thursdays I don’t usually eat much.  Frankly, Thursdays I don’t usually do much of anything.  It’s a wonder I’m even out of the house.

I see Dr. Ch. and several of her nursing staff.  A couple of the nurses actually recognize me.  Sheila the NP greets me and then beelines her way to Dr. Ch. in the front of the room.  Kathy whispers, “Do you think she’s telling her you’re here?”  And I wonder the same thing..…or perhaps I’m being too overly self-centric here…

The presentation begins and the first slide starts out with… “51 year old patient” And I almost spit my soda out and up through my nose.  And all I could think about was that this was going to be a case study presentation of a HER2 positive breast cancer patient related to neoadjuvant therapy – and I was the case study! (Pretty certain there was some breach of HIPAA here).

It was hard to look at the “case” objectively.  Dispassionately.  To hear the facts without the emotions and experience behind them.  Their implications.  Their life altering projections.   I found I could only look at the slides.  I couldn't look at Dr. Ch.  My poor friend Kathy I think, may have been even more uncomfortable then I was.  “Do you want to leave?” she asked.  “No, it’s OK.”  I’m thinking, perhaps I will learn something here?

I didn’t learn anything.

Well that’s not true. 

I learned that radiation oncologists don’t know what to do if the neoadjuvant therapy actually works.  And I learned…ah, what did I learn?  That it is weird being talked about in the third person when one is sitting right there.  

I learned that the dispassionate facts are just that.  Dispassionate - without passion.  Without person.  Without presence.  So what’s it all about?  (And what is “it”?)

It’s about being present.  About being there.  About experiencing and doing the experience deeply.   It’s about embracing life and all that comes with it – the easy road and the hard.  It’s about holding on to the Grace of Jesus in order to experience, to live, with a hope of joy.  It’s about community and serving.  It’s about thankfulness. It’s about loving deeply and serving with abandon.  It's about forgiveness and grace.  It’s about being rightly focused.  Not self-focused – even though this trek makes one have to be more self-aware. Yet more aware of the Road, full of grace.

Today’s Journey Joys: On a Journey, there are times when one seems alone.  But there are other times when folks, dear folks, walk along side…if even for a short while…. and make the steep jagged road passable.  Or at least make it seem a little more doable.  I am thankful for those who are traveling (if only for a brief period of time) with me on this breast cancer journey:  Dr. Ch., Sheila, Faith, Julie, Lori and others – from my oncologist office.  I am thankful for their perseverance, their hope, smiles, expertise, and encouragement.   

Hardwood Flooring

Two more weeks of Taxol.   And a tiredness that sleep does not heal weighs heavily.  And even though the sun is bright, the temperatures crisp, and the day quiet, I simply want to rest. 

Perhaps it is the cold I started experiencing yesterday.  Stuffy nose and head.  Sneezing.

We've been working on getting the “other house” ready for sale. Two weeks ago we put in the hard maple wood flooring I ordered almost 14 years ago…. Yes, that’s right, 14 years ago.  I guess it took us awhile to finally get everything done (flooring goes in last, ya know).

Farmer husband Gary installing the first row.

Me stapling the flooring. Love that John Deere pink!

It’s a long, tedious, rather flexibility-challenging job.  Up. Down.  Pound. Tap.  Nail.  Not hard.  But long.  It took us probably 10 hours to complete.  Sure looks great now that it is in.  Just as I had imagined it.  Now, if we ever build our new home, I want more flooring like this in it.  Durable, easy to clean, and beautiful.  I’m pretty sure I will never find the deal I did in 2000 when I purchased it:  ¾ inch solid maple, 3 ¼ inch planks with aluminum oxide coating for finish for just over $2 a square foot.  It was a great deal.  I really like deals. 

This past weekend, after the carpet people came earlier in the week and installed the carpet, Gary and I installed the trim.  Well actually, Gary installed the trim.  I spackled, primed, sanded , and painted plinth blocks and trim.  I hope to sand the spackled trim next weekend and then put the final coat of paint on. Maybe that’s why I’m tired?  But I don’t think so.  Exercise is good.  Both for the body and the mind. 

Today’s Journey Joys: hatching eggs set, second leaves on tomatoes and peppers starts, aromatic coffee, almond M&Ms, automatic dishwashers, hugs from the ones I love.