What a long month March has been yet it has been a whirlwind month. I believe it came in like a lamb and today it is trying hard to decide if it will depart in roaring lion fashion or leave gentle as a lamb. In true COLORADO spring weather today has brought us snow, sun, rain, sun and repeat. Typical to my personal days as well; dark clouds or sun, roaring lion or lamb?
After one cycle (2 treatments) of chemo earlier in the month followed by intense, increased pain in my upper back radiating from my spine across and down to my arms it was decided I would need a PET scan to determine what was going on. I had the results of the scan within an hour of leaving the facility after hours. Receiving a call back that soon, at that time of night I knew the news wasn't good. I was correct. The cancer had roared its ugly head causing spread through my neck/upper back and my chest area encroaching on my trachea and esophagus. I was scheduled ASAP for a bronchoscopy immediately after meeting with a radiologist, to determine the amount of airway left in my trachea and to see if I would need a stint to keep my trachea open. Bronchoscopy showed I had 50% of my airway unblocked so no need for a stint (thank you, Jesus!) but radiation was next on the docket. The protocol suggested was ten days of radiation to my upper back and upper chest area. I started the work up on a Monday (brutal laying on a hard metal table for 45 min with my arms in agony over my head), doc took the rest of that day and Tuesday to make his calculations and I was back on the table Wed for a mock up and to receive my tattoos (how on earth does a person withstand a full tattoo without passing out? A mere pin dot did me in! Two of my former tats from 17 years ago were still useable so I only needed one new one (again, thank you Jesus! The sunshine in the storm). I went back in on Thursday, March 17, for the first of ten treatments, getting weekends off. There was great hope that I would see immediate pain relief from tumor shrinkage. By Friday there wasn't much relief and the doc suggested a steroid along with a 12 hour slow release pain med (I was popping pain meds every 3-4 hours with no relief). I said yes to the slow release, upped dosage but elected to hold off the steroid. The weekend was complete agony with no relief what so ever and reg pain pills (break
through pain meds) every 3 hours on top of my baseline pain meds (12 hour slow release). I even had
two small episodes of choking Sat on a pill and on food. Monday I was trying so hard to stay ahead of the pain I was actually setting my alarm to wake me every three hours to swallow another pill. By Tuesday the steroid was no longer an option (it would be a short term dosage with the hope of relieving swelling and thereby stopping the pain and arm numbness - by this time my left arm was basically always numb and extremely weak) and my baseline meds were upped at night - from 20 mg to 40 mg. Wednesday morning dawned bright and clear. For the first time in ages I got a full nights sleep not once having to take a break through pain med and I could actually feel my left arm! Again, thank you Jesus! Without the pain I never would have known the joy of feeling good! True statement but I could argue there are easier ways to arrive at this conclusion!! So, is the radiation working on reducing the tumors, or is it the increased pain meds or is it the steroid? The prayer is that number one the radiation is shrinking those suckers for good and the other measures are just hold by, stand bys that will soon be a part of my past. Today I am tired (steroids come with an energizer bunny high that had me organizing drawers and clearing out closets till midnight and then I just laid in bed wide awake with my mind refusing to stop. After a few hours decent sleep and another hit of
radiation (#6) I put in 3 hours of work actually in my office at the church - the first appearance in over a week. Felt good to be a little more "normal" in the sense of the "new normal".
You know those closed doors of yesterday that I wrote about last month? Still hard to keep them closed and not run back to yesterday but God is starting to open some new doors! Those of you who know me well know that my passions in life tend to follow my stage in life (teaching kids and Children's Min when kids at home, then teaching Bible studies to women, getting my Master's, adjunct professor, Dir. Women's Min during the empty nest then hitting middle 50's and taking on Senior Adults which led to an interest in senior issues, grief counseling, etc.), and recently with my cancer diagnosis my new passions are with patient advocacy and end of life issues, all of which I have been quite vocal about (I know you are shocked, me...vocal???). Every medical profession I run into gets my spiel on "Being Mortal" by Atul Gawande and a plea to support patient decisions. I ran a seminar in February at the church about the book for the community and was recently interviewed for the Beacon (the local senior adult newspaper - right up there with the New York Times!) regarding
the impact "Being Mortal" has made on my own life decisions. It comes out this month. Anxious to see it. Yesterday I met the new social worker at the Cancer Treatment Center and of course we talked about "the book" - and patient advocacy so she asked me if I would come speak to their cancer support group about "the book" but more importantly she called today and asked if I would be willing to meet with the survivor support doctor about the possibility of presenting a program to the doctors at the Cancer Center. Didn't have to think about that one!! Yes, yes and yes! Even if I do get out of breath, sound incredibly breathy and have to take lots of breaks. I am excited. Those new doors of tomorrow are opening up!
Recently a good friend that I have a lot of history with (almost 25 years), and is going through this second diagnosis with me, sent me a card of encouragement. She loves to send cards, this is my favorite. It was a blank card on the inside with the outside sentiment reading "What Lies behind us
and what lies before us are small matters compared to what lies within us." by Emerson. More importantly I so appreciated what she wrote personally inside, knowing I had hit a low point and was ready to lay down the battle flag in sheer fatigue and defeat and needed some encouragement but she couldn't quite find the words, so she resorted to going to google that can find anything but wasn't quite certain anything would suffice but thought she found something to suffice by Mary Anne Radmacher ~ "Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day, saying, 'I will try again tomorrow.' "
So, as March tries to decide to exit 2016 either with a roar of a lion or meekness of a lamb I will forge ahead and say I'm not certain what radiation is doing, not always certain what God is doing, but I am aware of tomorrow's doors creaking open and with that, at the end of today I will say...
"I will try again tomorrow."
