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)

Unconventional Therapy with a German Shepherd Named Miles

SAMSUNG

(originally written on my CaringBridge page on 1/19/13)

If we had no winter, the spring would not be so pleasant.   ~Anne Bradstreet

Thursday marked my second treatment at Dana-Farber.  The late afternoon infusions work out well because not only can I work most of the day, the entire atmosphere at DFCI is quiet & relaxed.

I was blessed to have my mom come with me this week, and my prayer beforehand was that everything would be seamless—from driving in, parking, to overall ease of the treatment process.  I really needed her there with me early on this journey, so her mind could eliminate any scary, pre-conceived notions that often come with the idea of chemotherapy.  It was just as I had hoped for . . . drama-free.  Actually, we even had 10 minutes to spare upon arrival, so we popped into the boutique where my wig was waiting to be picked up.  They brought us out back and I tried it on for her . . . she was amazed at how natural it looked—exactly like my hair, fresh out of the salon.   I laughed at the idea that soon, I could eliminate “bad hair days” for a while from my life.  Glass half full thought of the day.

My anxiety level was considerably reduced this week before treatment because I knew what to expect, confident in knowing how my body handled it last time—the likelihood lessoned of an anaphylactic response this round.  My nurse heated my arm in advance, helping to ease the pre-treatment Benadryl pain.  He will also be gradually decreasing the amount each week, as I prove to tolerate the drug more and more.  Fighting the grogginess from Benadryl and the high from the steroids makes for a “unique” slumber experience (or there a lack of).

Arriving home late on a school night, I was unable to spend time with the boys.  Instead, waiting for my arrival was my other boy, my “angel nurse dog,” Miles who anxiously greeted me with kisses and love.

Miles’, our German Shepherd is now referred to as my angelic nurse dog, because he’s glued to my side whenever I’m home, checking on me all through the night, and if tears are ever present on my face, he licks them away.  He’s got a level of intelligence and heart revealed in those beautiful eyes that blows my mind.  God knew in advance, how much I needed his companionship during this time . . . and I’m blessed to have a furry prince to add to the “court”.

Though I felt depleted of all energy, Miles carried on a “Chewbacca” conversation with me for 20 minutes, tilting his head back and forth, as I snuggled in a blanket watching him.  I knew he was eager for some Miles/mommy time that we relish each day—usually consisting of lots of outdoor exercise and play, but sadly it was not physically possible for me.  I know he’s “just a dog,” but he honestly seems to get it, and he came over to me, gently motioning his head toward the dining room, nudging me along.  I got up and followed him.

There, we did laps around the dining room table, me following his lead.  It was honestly hilarious—a YouTube moment to behold for sure.   He started us off walking.  Next, a slow jog …then into a sprint.  He’d look back at me periodically, making sure I was keeping up.  We must have done 150 laps before we were done.  It was amazingly therapeutic.

Though my steep climb just begins on this uphill venture, I am blessed beyond words for the “cream” that has risen to the top of my relationships.  I am so grateful for the AMAZING people in my life who have gone above and beyond to support me, love me and encourage me.  The generosity of each of you is overwhelming . . . truly overwhelming.  You are loved beyond words.

No Pain, No Gain

no pain no gain

(originally posted on my CaringBridge page on 1/12/13)

“I know God will not give me anything I can’t handle.  I just wish that He didn’t trust me so much.”

~ Mother Teresa

Oddly enough, I’m someone who enjoys the victory pain associated with a tough workout.  When I feel my quads aching while walking up a flight of stairs and the general feeling that I’ve kicked some real “glute” at the gym, it’s a “comforting” reminder that my reward is coming . . . progress is being made.

Wednesday’s first chemo session went well … and as of today, I physically feel GR-R-REAT.  I know that’s an excellent report and I should be doing a little hallelujah dance right now, but the sad truth is, I psychologically long for that physical assurance that “my reward is coming.”  Basically, I want to feel the tangible pain of progress.  Yes, I now give each of you permission to remind me of this foolish philosophy on week 18 of treatment, when I will most likely long to feel like Tony the Tiger again.

I got a call Thursday, telling me I do NOT need another biopsy for the trial!  To say I was thrilled with those words would be an understatement.   I was assured that I’m still being researched in the clinical trial, but after reviewing all the information with my oncologist, the researchers indicated another biopsy would not be necessary.  One less distress.  <Sigh of relief>

Genetic Testing:  The results came.  All results were negative.  Though “negative” in the realm of cancer always seem positive, I’ve been told that there is still so much work being done on genetics that it’s hard to feel “secure” in the findings.  Although the BRCA gene test (which tests specifically for breast cancer) can detect the majority of mutations in the BRCA1 and BRCA2 genes, it’s still possible that you could have some type of gene mutation that the tests weren’t able to detect, and/or one that researchers haven’t yet identified and developed a test for.

Please don’t misinterpret this as a “Debby Downer” moment, but rather an expression of caution in validating these results as “great news.”  The fact is, I still have breast cancer and feel the very real need to advocate for my family — to be vigilant in testing, self exams and even potential genetically linked cancers for my own children.  This doesn’t mean I plan to live in fear, but rather live with shared knowledge… knowledge that gives confident power in caring for our bodies.

Now faith is confidence in what we hope for and assurance about what we do not see. (Hebrews 11:1)

Faith is what keeps me going and keeps me secure in knowing that regardless of my physical state, good or bad…my hope can only be found in one source . . . Moment by moment . . . new mercies He shows.

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 . . .

Indescribably Indescribable

Miracles Happen

Miracles are a retelling in small letters of the very same story which is written across the whole world in letters too large for some of us to see.

C. S. Lewis

(originally posted on my CaringBridge page on 1/8/13)

There are some moments in life that are almost too surreal to adequately put into words.  Those of you who may read my journal (or as I refer to it—the c-Blog), and were actually witness to what happened Sunday morning . . . well I needn’t say more.

Divine encounters are just that . . . Godly appointments orchestrated on High, for a greater purpose, often times used to reveal Himself in an undeniably powerful way.  This particular encounter was something that I’ve never experienced before.  It was overwhelmingly beautiful to say the least.

We often go to church on Saturday evenings, but this weekend John and I both felt strongly about going on Sunday morning instead.  Upon arrival, we entered a packed sanctuary and were blessed to receive an encouraging, hope-filled message.  Then, in an unusual gesture during communion, the Pastor felt prompted to encourage those in need of any type of healing (physical, emotional, spiritual) to come forward to receive prayer.  Now normally, it takes a lot for me to be prompted to act on such an invitation, instead I’m usually one of the people interceding on behalf of others.  However, at that moment, I knew that I would be a fool not to take the invitation … acknowledging the simple truth that I need prayer even if that involves stepping completely out of my “comfort zone”.

During prayer, the Pastor felt led to ask if there was someone who needed to share a testimony.  One person, without hesitation spoke and when finished the Pastor asked again, if there was someone else who wished to share a testimony.  It was very unusual—clearly not a “planned” part of the service, instead Spirit-led.

A woman stood up in the sanctuary and started to move forward toward the platform.  The Pastor realized this was not a regular parishioner, but a first-time visitor.  Yet in an act of faith, the Pastor handed her the microphone.  Before she spoke, I looked at this woman, and though I’d never seen her before in my life, I felt an unusual connection.

When she spoke, there wasn’t a dry eye in the house.  She talked about being diagnosed with breast cancer, and being told that it had traveled to 18 lymph nodes, aggressively moving through her body.  She then shared the pain this brought to her life but how the power of God brought healing to her body and joy to her entire being.  Her story was moving and powerful!  You could feel His amazing presence there … “For where two or three are gathered in my name, there I am in the midst of them” (Matt 18:20)

After the service, we talked for a long time and she shared how God had been waking her up for the past three nights at 3:00 am, prompting her to pray for someone, she was unsure who.  She then shared how she had no intention to visit the church but not knowing why, felt prompted to look up directions to the church the night before.  In addition, a week prior, she had dreams that God would be using her to touch and heal lives with her story.

The entire morning was indescribably indescribable.

Through this divine encounter, I met a soul sister handpicked for me at that moment.  The Lord reminded me of His promise — that He has no intention of leaving me or forsaking me and that it was He who knit me together perfectly in my mother’s womb, creating my inmost being.  His gentle whisper assured me that He would keep me as the apple of His eye, hiding me in the shadow of His wings.

I am blessed.