Nina Speaks . . . and I’m Feeling Good

Nina-Simone

(originally posted on CaringBridge on 1/28/13)

Birds flyin’ high you know how I feel . . . Sun in the sky you know how I feel . . . Breeze driftin’ by you know how I feel—It’s a new dawn, it’s a new day, it’s a new life for me, and I’m feeling good.

~ Nina Simone

Feeling Good is one of those cool songs that when you’re feeling really bad, it’s got medicinal properties to pick you up and when you’re feeling really good, it lifts you up higher.  Nina Simone always executes that powerful cry for freedom in her music that just shouts . . . Whatever this world throws at me I am still blessed and refreshed because this world can’t take away my inner freedom.

This week marks week 4 of chemotherapy . . . only 16 more weeks to go.  There was actually a faint, initial excitement typing the word only until I looked at it a second time . . . then suddenly my mental energy was completely focused on the word – more.  The focus shifted to:  “What?  16 MORE weeks to go?  Seriously?”  In truth, this is the easy part of the journey, so I will stick with my optimistic sing-songy attitude “YAY, only 16 more weeks of chemo!”   Actually, let’s scratch sing-songy and go with raspy-jazzy-Nina-Simoney.  I’m Feeling GOOD.

In terms of side effects—overall, my body has done very well so far.  I have heard horror stories and read of people who really fight a brutal battle with the nasty side effects of these life-saving poisons.  Therefore, I try not to focus too much on my trivial physical “ailments”— as I’m aware it could be so much worse.  In short, I have had moments of extreme fatigue and many more moments of abdominal pain and malaise, but no signs (yet) of neuropathy in my fingers and toes which I’ve been instructed to “expect”—a numbness and tingling that often makes certain tasks more difficult.  As for my hair situation, my scalp has become very tender, sort of like that feeling I used to get as a little girl when wearing my hair in a ponytail all day—once that elastic came out at the end of the day, it was sore and tender to the touch.   This sensation, so I’ve been told, is the forboding of hair on its way out.  It has been gradually thinning a bit . . . mostly showing up in the shower, but nothing unmanageable or overtly noticeable.  I’ll know when it’s time to shave the head, and will make no bones about embracing the buzzer when the moment does present itself.

Another newer, more pronounced side effect I’ve had going on . . . joint pain.  I know people who struggle and suffer with debilitating forms of joint pain, including Fibromyalgia and rheumatoid arthritis.  My heart breaks for those living with thisdaily and I truly sympathize—what must be torturous day in and day out.  Now I’m not suddenly claiming to be an expert in pain by any means, but feel there is a tiny part of me that can trade my sympathy for literal empathy.  Though I have not walked a mile in the shoes of people in chronic pain, this past week I’ve experienced a noticeable, constant sense of joint pain.  One night, mid-sleep, it came out of nowhere and almost felt like there was a little sledgehammer banging by bones from my shoulders down to my feet—a little demolition taking place throughout my body.  The thought of people living with this constantly, makes my life look like a walk in the park on a perfect day.

Saturday marked exactly one month since my official diagnosis.  If I sit on that thought too long, recalling that day . . . it’s quite possible that the neuropathy I spoke of may actually be starting in my brain—a numbing sensation that still grazes that fine line between fiction and reality.  Is this all just a dream?  Unfortunately the answer would be a flat out:  No.  But fortunately, I know my summer’s on its way.  John Steinbeck wrote it perfectly in his book, Travels with Charley:  “What good is the warmth of summer, without the cold of winter to give it sweetness.”

In the meantime, during my cold days of winter, I can say like the Psalmist, David who trusted God beyond anything else . . .

Your righteousness, God, reaches to the heavens, you who have done great things.  Who is like you, God?  Though you have made me see troubles, many and bitter, you will restore my life again; from the depths of the earth you will again bring me up. (Psalm 71:19-20)

Miles to go Before I Sleep

Woods

(originally written on my CaringBridge page on 1/22/13)

 . . .  The woods are lovely, dark, and deep, but I have promises to keep, and miles to go before I sleep, and miles to go before I sleep.   

~ Robert Frost

Sleep.  That simple 5-letter word, wildly underestimated until you’re getting very little of it.  Sleeeeeep.  Often something I’ve been reluctant to do, but don’t want to stop after I’ve started.  Lately, sleep has become that simple yet complicated word that’s constantly on my mind . . . especially during the hours that I wish I were visiting its happy, sleepy place.   Oddly, it is during the moments of heavy fatigue, an exhaustion I’ve never experienced before, that sleep is so desired—but not found.

Growing up … and maybe even in recent days . . . certain music often puts me into “movie-mode” (Michelle’s roaring out loud right now, because only she totally gets what I’m talking about), when the music becomes a background score to my own life soundtrack.  As kids, traveling on long road trips, we would be in the back of the car, with our headphones on, dreamily glancing out the window—the music bringing us into our individual, private utopia.  Tonight, I went there—movie-mode . . . only instead of music beckoning me into my movie, it was the peaceful blanket of snow lingering on the trees out my back window that became my life’s score.  It was beautiful.

There I was, “Stopping by the Woods on a Snowy Evening”— trapped in a Robert Frost poem.  The outward simplicity of this 16-line poem brought so much depth to my movie moment.  Like the narrator, lately I find myself often yearning to linger in the quiet solitude of isolation . . . the darkest night, watching the snow fall.   In the poem, only through the resounding bell of the horse’s harness, does the narrator finally get jolted to remember the many promises he has to keep . . . miles to go, no time to give up.

<sigh>

Thank you, Lord for reminding me of your promises.  I choose hope, knowing that I have many miles to go before I sleep . . .

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.    

(Jeremiah 29:11)

 

Waiting to Shine in the Break of Dawn

Dawn

(originally posted on my CaringBridge page on 1/10/13)

However long the night, the dawn will break.

So I’ll lay out the first news of the day:  I am not receiving the clinical trial drug that would have worked in synergy with the standard chemo.   Yes I know… deep sigh. Cringe.  Let’s just say, if I was a gal who actually believed in luck (which I’m not) … it would be tough waking up each day without getting struck by lightning through my bedroom window!

Though we have been actively hoping and praying that I would hear different news today, I honestly have peace right now.

After the biopsy, as John and I made our way to meet with the oncologist and research team (to learn my status following computer randomization), I looked at him and said … the truth is, I tell myself I have been praying for God’s will be done, but my prayers and desire on this issue have really only been to GET the drug.  I need and really want His will to be done in this.  Believing means knowing that His way is best — period.  So these results really don’t matter, in His grand scheme.  So we both individually prayed for this the entire time we waited.

The oncologist called us in and we were still waiting on the research nurse to join us with results.  We talked about what to expect with my first infusion while she thoroughly examined me.  I’m thrilled to have her on my team.  The research nurse came in and after introductions, I couldn’t help myself.  “So?… was I picked in the randomization?”   She opened the chart (already knowing, of course) and almost sympathetically said, “No, you are in ‘Arm B’ of the trial, a participant in the smaller percent who DON’T get the drug.”  I paused, smiled and said, okay, we knew that was an obvious possibility.

The oncologist looked at me and assured me that this news does not negate the fact that I will be getting the best, most aggressive treatment…further reminding me that this trial may prove to not be effective at all.   I nodded, grateful for her encouragement and then glanced over at John’s face.  When you’ve been best friends with someone as long as we have (almost 19 years), you can’t help but feel what the other is feeling.  He hurt for me.  I then glanced again at the research nurse … silent and sympathetic, and cried for a minute.  Honestly, it was just that … a moment of releasing the coveted desire I carried for the last week and then just like that, relaxed, feeling a real peace that passes all understanding.  It wasn’t meant to be for me.

The oncologist left, as we continued chemo discussion with the nurse.  We then learned the bad news of the day—the trial stipulations did not clearly lay out the hidden fact that the next biopsy needed to be scheduled within 48 hours!  There I sat, ice in my bra, still black and yellow from the biopsy on the 21st of Dec.  Now further swollen and achy, they’re telling me I need to do this again in 2 days.  Let’s just say John in “protective-mode” was NOT a happy camper.  This really wasn’t clearly discussed nor written anywhere in the paperwork I signed, so we expressed our concern and overall disappointment with the added inconvenience and general misery this would bring.   After all, Thursday’s trial conversation had instead confirmed 2 weeks after my first infusion, the obligated biopsy needed to be done.

Anyway, John needed to chill out and I said let’s just deal with it and move on.  The nurse felt bad and wanted to further investigate.  Needless to say, while grabbing breakfast in the cafeteria, my oncologist frantically found us and said she was so upset at the vague details of the trial, that she formally complained, and pushed the biopsy off until next week (giving me a little extra time to heal).  Yay.

I also LOVE my chemo nurse.  We really connected! He’s great … fun, yet serious and filled with knowledge and answers.  He will hopefully be my guy for the duration.  John and I were happy with his attentiveness and compassion.

I pretty much avoided thinking about chemo until he hung the bag and was ready to start.  I already had a double dose of Benadryl via IV (which had a “burn-a- hole in my vein” feeling, apparently a normal sensation for many).  This was given in case I was one of the “anaphylactic shock” cases (lightning striking).

When the taxol was ready, I got an overwhelming feeling of anxiety.  I didn’t anticipate that reaction at all.  I think for a brief moment in Benadryl groggyville, I became that “gal believing in luck” and given the recent life events, assumed I would be the rare one to code on this drug.

Ahhhh, but no.  I am not that gal and the treatment went well, as I caught a long overdue nap with a lovely heated blanket.  It did its thing, and the nurse gave me a thumbs up and wink at how well I did.

Treatment one:  Done.

Help me, dear God to remember that challenges and heartache are perfect opportunities for my hope in you to shine . . .

Scarlett

Scarlett

(originally posted on my CaringBridge page on 1/9/13)

A feisty little southern accent is spinning through my head right now as Scarlett O’Hara’s favorite quote repeats in my head:  “I can’t think about that right now . . . I’ll think about that tomorrow.”

My best practice in procrastination always came when preparing for exams in subjects I had little to no interest in.  My golden study rule went something like:  Avoid. Avoid. Avoid. That was until, of course, the night before test day when I would Cram. Cram. Cram.

Tonight I felt that urge to take a crash course in chemo . . . perseverating on likely side effects to the hoped-for trial drug . . . and standard medication that will become my life for the next 20-22 weeks.  Things like kidney failure, liver failure, heart failure, thrombosis . . . all cramming in my brain.

I laughed out loud thinking of Scarlett and how apropos her famous line was to my situation right now.  It’s not as if I need Vivien Leigh’s memorized script from Gone with the Wind to remind me of God’s Word.  My 10-year old son, Colby periodically started placing encouragement for me to look at on my bathroom mirror.  This wise young man placed the scripture Matthew 6:34 most recently on that mirror.  “Never worry about tomorrow, because tomorrow will worry about itself. Each day has enough trouble of its own.”

Let’s be honest here . . .  this is not a favorite subject I wish to master through cramming the night before—in nervous anticipation of an exam.  The results of this “test” will not be measured by how well I hold on to researching the details, but instead, how well I let go of the details and let God determine the outcome.

So let’s hear Nicole’s best Scarlett one more time . . .  “I can’t think about that right now . . . I’ll think about that tomorrow.”

Be Still and Know

be-still-and-know

(written on 1/4/13 originally on my CaringBridge page)

Sometimes the Lord rides out the storm with us and other times He calms the restless sea around us. Most of all, He calms the storm inside us in our deepest inner soul. 

~ Lloyd John Ogilvie

If I had written down my thoughts on Thursday’s adventures at DFCI when I got home at 8:00 last night (need I say more), I would have sounded something like Veruca Salt from the original Charlie & Chocolate Factory—rotten and bratty.  My day was just missing that beautiful “Undo” feature I frequent on the computer.  It was bad.

It’s funny how circumstances like this often times allow one to step back and really take a long “glimpse” in the proverbial mirror.  The reflection can be pretty ugly.  I realize more than ever how my reactions to situations are often based on the expectations I have.  When those “expectations” are unmet, I easily drift into meltdown zone.  My strength and “center” only come when I’m earnestly standing firm on the solid foundation I know to be Truth.  All too often, I’m so rushed to get all my “ducks in a row,” I don’t stand still long enough to allow His still so small voice to resonate in my very being, ordering my footsteps.   Yesterday was a prime example.

A distinct agenda had been laid out for Thursday’s brief visit to DFCI.  My oncologist mentioned that after my 9:15 am “hair prosthetic consultation,”— (Yes, I’m actually laughing right now, typing that), she would be able to squeeze me into her schedule to sign off on the clinical trial paperwork and have the research nurse go over chemo schedule, etc. etc. with me.   The wig folks had been really booked up until late next week, but had one slot open at 9:15 on Thursday.  I jumped on it because the doctor informed me that one of the meds produces hair loss very quickly (within 2 weeks of treatment, it’s time to shave); so realizing I would be doing weekly chemotherapy, I needed to wrap my head around the wig situation, (pun intended).  Apparently many wigs take between 10 days and 3 weeks to order, and I really didn’t want to be faced with further insecurity and anxiety.  So I dropped the boys off at school and headed to Boston.

There I was trapped in a parking lot called the Southeast expressway— every commuter’s nightmare.  I decided to ease the situation and “trust” my good ol’ GPS to take me on a new route to save time.  There was my first mistake.  Though I had lived in Boston and worked there for years, a distracted mind coupled with an anxious heart left little room for me to find my way out of a box, let alone try to follow a confused GPS that clearly had no clue how to maneuver around the crazy Boston landscape. Tick tock went the clock as I aimlessly drove in circles to get to my home away from home.  Finally I arrive, only it’s 10:08 and I’ve missed my appointment—no wiggle room to reschedule.

Now, under normal circumstances, this little inconvenience would be a mere blip on the map of life, but for me, at that moment, I had a personal “mini-melt”— despising everything.  Why is this happening . . . nobody understands . . . why why why?  It was my fetal position, thumb sucking-sorta moment.  John was on the phone with me trying to be sweet and supportive . . . but the reality was, with my bad attitude and mental state, he didn’t stand a chance.  I didn’t want to hear anything positive.  I was sour and angry, celebrating at my own pathetic, little pity party.

The drama continued when I checked in on the oncology floor.  I’ve never seen so many cancer victims in one place … there must have 100+ bald-heads waiting to be seen. They saw the doctor’s note in the system, but informed me that there would be a bit of wait, unsure how long.  She suggested I grab a coffee and return in about 45 minutes.  I decided to head downstairs to the wig folks just to browse.  I grabbed some catalogs and I asked if there was a sample wig or two to try on . . . I immediately liked the first wig and said can we order this and get fitted later?  That was that.  One more duck in the row of chaos.

So the 45 minute jaunt to wig land at least got one mission accomplished on my list.  Unfortunately, though it wasn’t looking good to get in to see the doctor and so they recommended I grab some lunch and return in an hour.  I decided to visit the healing garden and try to get control of my emotions.  There I journaled . . . and thought about everything.

Needless to say … after my “lunch break” I waited an additional 3 hours in the waiting room. Looking around the room packed with people, my mind wondered which of these people would be here in a year, 5 years, 10 years . . . the thought frightened me for a moment.

In the room, we made a plan.  We talked about the trial, going through the highlights of a 70+ page document outlining everything from side effects, phasing etc. etc. etc.  Then I was told I needed additional blood work because there was a 7 day window for the trial concerning labs that was about to expire.  Seven tubes of blood and 2 EKGs later, I left DFCI, scheduled for next Wednesday’s start!  Biopsy will be at 7:00 am followed by oncologist appointment where I will learn if I was chosen by the computer-generated randomization (happens right after biopsy is complete), more blood (arghhh), then infusion.  If I get my desire, and am chosen, I will be infused solely with the antibody for 2 weeks, then on with that combined with standard chemo from weeks 3 to 22.

So … my pity party is over, and I will desperately try not to revisit.  Instead, I hope that I learn to be still and know He is with me, even when my desired order of affairs doesn’t seem to go my way.   His expectations for my life far outweigh the best case scenario I can conjure up . . . so I need to let go and lean in.