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.

Bottled Up Air

Bottle

(written on 1/2/13 originally on my CaringBridge page)

Now faith is the substance of things hoped for, the evidence of things not seen. 

~Hebrews 11:1

2013.  A new year, a new journey.  If I was in control of this ride, I’m quite certain my GPS would not have chosen this route…there would have been a definite “Detour” notification.   But, the good news is, I’m not in control.  It’s hard to admit that, but reality check:  I can do nothing in my own strength anyway, so I’d rather not be in the driver’s seat.

I must say, it was wonderful to wake up this morning and get back to my “normal” daily routine—packing lunches, checking backpacks, and hitting the road for school and work.  All morning, I tried to block the mental anxiety of waiting on results from pathology.  I think I anticipated that first thing in the morning I’d get the call and be able to move on with the next step (a somewhat narcissistic notion that I’m the only patient on my island of disbelief).  The morning, however, came and went with no news.   Finally, I got the call from one of the oncologists . . . results in.

Ahhhh, the news we were all hoping for:  Estrogen and Progesterone +, Her2 -.  In non-scientific terms, the best case scenario for treatment all around!   Let’s face it, I never envisioned a day would come when I would find myself giddy over cancer cell composition, but that is my new reality . . . and I’ll take any giddiness I can get my hands on.

In addition to results, I learned that the rate of growth on my tumor was at the highest end, a grade 3…3 being the most rapidly growing type of cancer.

Stage III.

Time for treatment.  Let’s get ‘er done!

My oncologist informed me that finally, with all the facts on the table, I was eligible to participate in a clinical trial for my “type” of breast cancer.  This would be in addition to standard chemotherapy, which will start next week, once a week for 20 weeks.  Basically, DFCI will be home away from home for a while.  This clinical trial works in synergy with the chemo, an antibody used to attack a certain protein found in tumors.  The side effects aren’t too bad and it would be done in conjunction with Taxol, a lovely member of the chemo cocktails.  A couple of cons with the trial . . . only 2/3 of eligible participants actually receive the drug.  If you are not picked, you still must complete 2 additional core needle biopsies.  One done the first day of chemo, the second, two weeks later.  Though it sounds like an additional burden if you’re not receiving the drug … it’s going toward cancer research, and by golly, I’m taken one for the team if it may help find new answers to this nasty mystery.  Tomorrow I will meet with my oncologist and NP to finalize the paperwork for the trial and I can get more details on the chemo regimen.  Please pray I’m one of the chosen ones for the trial.

The award-winning moment of our New Year’s “celebration” came when Logan—my 8-year old, Naturalist (his dream profession) was walking around with a container tightly sealed in his hands.  When we asked what he was doing, he said “I’m trying to preserve the air from 2012.  I’m trapping it, because once it’s open, it’s forever gone.”  We laughed at his intriguing thought process … and for a moment I felt like that trapped air, desperate to escape the bottle.  I pray soon that I will exhale this incomprehensible “breath” I have been holding.

One day at a time.

Divinity at Work

Heavy Downpour

(written on 12/29/12 originally on my CaringBridge page)

O Lord, give me a strong hope in you that dances in the rain and sings in the silence.

Leslie, the amazing oncological NP who’s been by my side since my first appointment, (calling me every day since)—failed to disappoint yet again.  She called me with the MRI results, which have already been sifted through in preparation for the appointments with the Dana-Farber team on Monday in Boston.  The sensitivity of the imaging allows them to really assess the situation which will impact treatment and surgical measures.  As we already knew, the mass covers a large area.  The MRI results, however, reveal two additional lesions beside the main tumor which have ultimately enhanced the overall “size”.  So this is and isn’t breaking news.  Bottom line:  it’s great they’ve moved quickly on analysis, so that the oncologists Monday will have a more complete picture of my case.  Though I’m ready to get the show on the road … ASAP, I trust that God knows the perfect timing.

When I get down, which I anticipate to be…ummm… a true reality over the course of this journey, I will try to recount the many ways I have seen Divinity at work.  Happenstance is Hogwash.  Seriously.  Remember that every time someone “coincidentally” crosses your path at the right time.  Yesterday’s divine appointment came first thing in the morning prior to my MRI, when I ran into Nancy Jageselvan.  I was a bit edgy at the time, and when I happened to glance over and see her pretty face, I immediately relaxed.  That’s not happenstance.  She blessed me more than she knows with that hug and smile.

Ahh, then there’s Lauren Mathisen.  God is GOOD.  They say we entertain angels unaware, right?  Honestly, Lauren probably doesn’t realize the extent of her anointing, but she has texted me and encouraged me on several occasions . . . exactly what I needed at the exact moment I needed it.  I’ll go with angel.

Thank you for lifting me up.  Through your support, I’m able to keep the down emotions in check.

Exodus 17:8-13 says: “Moses stood on top of the hill with the rod of God in his hand overlooking the battlefield, and as he lifted it up it showed their dependence upon the Lord and there would be no victory without God’s intervention. The Israelites prevailed while the rod was lifted and when Moses’ arms were too tired to lift up the rod, Aaron and Hur found a rock for Moses to sit on and they held up his hands.”

Please continue to pray for me … my arms may get tired along the way.