Refuge and referrals

“Be my rock of refuge, to which I can always go; give the command to save me, for you are my rock and my fortress.” - Psalm 71:3

“Onward,” bellowed the commander. Looking back at his band of compatriots, he urged them forward in their march toward battle. “Leave no stone unturned, we need to capture every stray cell we can - this is a matter of live and death.” The warriors redoubled their efforts, searching out errant cancer cells, obliterating them with their powerful chemicals, and exhausting their every reserve.

In my head and hopes, the warriors are winning. The Xyloda chemo pills are taking out the rogue cancer cells, and although my body is tired from being a battlefield, and the side effects of vomiting, nausea, and diarrhea are truly destructive, we’re gaining ground.

And, yet, the blood work nearly two weeks ago did not show the same progress for which we prayed. Sigh… once again, my CA-125 tumor marker was higher than the previous test three weeks prior. If you recall from my prior posts, the elevated CA-125 means there are some active cancer cells in my body - somewhere. My oncologist encouraged us to take steps toward getting a second opinion for treatment as soon as possible. Although the tumor marker climbed higher, it did not increase at the same rate as previously. I’m continuing to take the chemo pills through my third cycle, with the hopes that they are slowing down cancer growth.

As I write this post, I’m on an airplane (with my beloved Sean) headed to Washington, DC, for my CAS Council and Governing Board meetings. It’s been a year and a half since I last was able to be with these folks in person, and I’m alternately excited and nervous. They haven’t seen me this way, with my significantly reduced energy levels, short brown pixie haircut, and easily exhausted/sick self. I’ve worked for a year now to be both a cancer patient and an executive director. Somedays, inhabiting both roles is tough but I’ve persevered. I’m thankful for the compassion and grace of my colleagues, and ultimately, I’m looking forward to being with them, sharing stories, and swapping hugs.

My wonderful friend Danny surprised us with a visit!

This past Wednesday was the anniversary of my breast cancer diagnosis. And, as a sensitive soul, I deeply felt the pain associated with knowing it’s been 12 months since our lives changed forever, and that the year didn’t go as well as we’d hoped. I’m not cured. My tumor, Felicia, may be gone, but she left behind the worst of her crew. Those persistent cells that broke out of the tumor and made their way into my lymph channels are now my microscopic enemies. And, even when they’re not visible, I know they’re in me and they have the potential to create great harm to my body. So, we fight on.

Part of the fight means we’re traveling directly from DC and this weekend’s meetings to New York City, where we’re seeing a renowned triple negative breast cancer (TNBC) oncologist at Memorial Sloan Kettering. All of my records, pathology slides, and images have been sent to her office for her review. My expectation is that she’ll reiterate the traits and risks of this horrible TNBC; our hope is she’ll also have some additional treatment ideas and options for my battle. We feel very fortunate to have the means to travel and stay in Manhattan for this appointment, and we welcome all of your prayers and supportive thoughts as we embark on this adventure.

Because preparing for a meeting in DC, appointment in New York, and traveling during chemo treatments didn’t quite seem sufficient, I also began experiencing pain in my chest and shoulder region this past Monday. On Tuesday, since the ache, shortness of breath, and discomfort (especially when coughing or blowing my nose) hadn’t dissipated, we got in for a CT scan of my chest. As nice as it was to meet more wonderful imaging techs and nurses, it was yet another cause for intense fear. What if the scan showed metastasis of my cancer? What if those cells had finally made a home, and it was in my chest wall or lungs?

Twelve hours later, we received results. Nothing of concern appeared on the images. Some residual scarring from the radiation seemed apparent, but otherwise the scan looked okay. Another mystery turned miracle, and I’m thankful to God for his refuge and protection. I must have done something to my musculoskeletal system, perhaps through sleeping strangely or wearing too-tight compression garments for the lymphedema. I received no definitive answer on the cause of my pain, but ice, rest, and Tylenol seems to have alleviated it.

So, here we are. Winging our way to the place we called home for nearly 10 years, and with time set aside to see some dear, dear friends and hug some adorable kiddos. Perhaps it’s not the triumphant homecoming I dreamed of a year ago when breast cancer looked to be a temporary challenge in my life rather than a constant companion. But, if this is the only life I get - I’m so glad to know I can be with people I love for a few days. I’m going to pray for strength and peace, pace myself through the long days, remember my current limits, and rely on the kindness of others to push through.

Also, I’m gonna eat my favorite Mexican food for the first time in far too long… in this battle, I know that will help. Onward to Guapo’s!