When pain persists

“I didn’t want my picture taken because I was going to cry. I didn’t know why I was going to cry, but I knew that if anybody spoke to me or looked at me too closely the tears would fly out of my eyes and the sobs would fly out of my throat and I’d cry for a week. I could feel the tears brimming and sloshing in me like water in a glass that is unsteady and too full.” - Sylvia Plath

Nothing among the stack of books or reading materials from my initial breast cancer diagnosis reflects my current state of being. This stage IV cancer is not "crazy sexy;" I'm not feeling like a badass; I haven't been able to heal by hoping for it; and I cannot stomach tea or coffee while on my current treatments.

Breast cancer has become so pink-washed by our society that most of us only think about the beatable, survivable stuff. The chemo-surgery-radiation cycle responsive breast cancer.

I don't have that. I have the kind of cancer that kills women within an average of 3 years and is wildly under-researched (see https://www.youtube.com/watch?v=FpSu9U1yXA0). Metastatic AND triple negative breast cancer is ugly stuff.

More immediately, I have the kind of cancer that really hurts. It's physically painful to sit, lay, stand, etc. I didn't know about this! My lungs, with their pleural effusions (the fluid in the lining around my lungs), hurt badly. Like rolling-in-bed-moaning-tearfully badly. Some of my bones where cancer has taken up residence feel as though knives are being scraped along them. My back constantly hurts. When I cough from the cancer nodules in my lungs and lymphatics, my whole body shakes and aches. Sleep is not restful... no matter how long I lay there and even knock off, the fatigue doesn't go away.

All of this - and more - has contributed greatly in the past month to me feeling depressed. Seriously in a funk of the clinical sort.

Some of you have noticed. Thank you for reaching out and for understanding the radio silence you've received in return. Your cards, calls/voicemails, texts, Facebook messages, and more are appreciated. I just don't always know what to say or how to muster the energy sometimes to respond.

All decked out in cords and monitors
for my hospital stay

A lot of this started when I was hospitalized again - this time in Colorado - for 2 nights starting April 11. I was overcome by shortness of breath, as the pleural effusion on my right side had rapidly started collecting fluid and reducing my capacity to breathe. But, I had to be in Chicago for treatments mere days later! The hospital doctors prescribed oxygen that I have to wear all the time now, so we couldn’t fly on short notice. With the truck loaded up with 15 oxygen tanks and a compressor, we had to drive south over that weekend to get around the winter storms in Nebraska and Iowa - a trip that took 19 hours. I had my infusion treatments at Northwestern on Monday, April 16; this included the first dose of the chemo drug Carboplatin in conjunction with the immunotherapy drug.

Meanwhile, the pulmonary doctors at Northwestern were very concerned about how quickly my right lung was accumulating fluid. So, on Tuesday, I had to get a second catheter/drain - this time on the right side where fluid is building up. Sean has to drain that side daily, and we're still getting out more fluid than we'd like.

We spent the remainder of that week at my parents’ house, where I could barely get out of bed and couldn't eat much of anything. We drove back to Colorado (via the much shorter northern route) over the weekend. It was still a long, painful ride for me.

By the time we arrived home, my depression was full-blown. The pain, the isolation, the seemingly endless string of health issues to endure... it wiped me out. I'm physically weak, struggling to eat even small meals, crying a lot, and requiring loads of help to do even basic tasks. Oh, and the oxygen tanks. Nothing makes you feel prematurely on your deathbed like having to wear a nasal cannula and lug around tanks of oxygen. When I'm at home and hooked up to the oxygen compressor, I have 50 feet of cord trailing me. We were able to get a portable compressor this week for travel purposes, which will make flying on planes possible again.

And, since I told you that my type and stage of breast cancer is nasty, I'll share one more bombshell. Remember that vision change I mentioned I was experiencing a few posts ago? Well, the Northwestern team wanted me to get a brain scan to check that out. I spent a peaceful 30 minutes in prayer and thanking God for all His gifts while the MRI machine rattled and banged around me. Unfortunately, those results came back last night, and there is a 3mm cancerous lesion on my brain.

I'm officially on the treat-scan-repeat path now. The spot on my brain is treatable with targeted radiation, but next steps will depend on what the Northwestern clinical trial team decides to do with me. It's possible that this brain metastasis could make me ineligible for the immunotherapy trial I'm on. The decisions lie in their hands.

So, there it is. Your prayers and thoughts would be very much appreciated. Still hoping for miracles and a full cure, but feeling God may have other plans for me. Our hearts, minds, emotions, and bodies need strength and patience and peace. We pray for the doctors at Northwestern to make good decisions about my care, and we pray for us and our families to receive the support we need.

“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” - John 16:33

March, the lion

“I took a deep breath and listened to the old brag of my heart. I am, I am, I am.” - Sylvia Plath, The Bell Jar

“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds.” - James 1:2

Snowshoe buddies!

The early March skies were brilliant blue against the Colorado mountains, the snow shimmered in abundant sunshine, and my friends surrounded me in their snowshoes. Once again, we were gathered in Frisco for the Snowshoe for the Cure. I didn't publicize my participation much this year, since I'd recently received my metastatic breast cancer diagnosis, and I was overwhelmed by hunting for clinical trials and coming to terms with my new reality. Our team was amazing, as to be expected. Several of my closest friends rallied around to show support and celebrate.

But, I could barely breathe.

Chalking up my breathing challenges and frequent coughing to the 10,000-foot-plus altitude, I sat out the actual event so as to avoid further taxing my struggling lungs. Sarah and I hung back near the start/finish line, talked to vendors, and waited for our team to return. It was a fun day overall and being with friends was special, but my heart wasn't in the experience like last year when I thought my cancer fight was nearing its end.

Two days after the event - when my besties Sarah and Sacha had headed back to their respective families - Sean and I boarded a plane to Chicago to get started on my clinical trial adventure at Northwestern. Unfortunately, we were deemed ineligible for a trial we'd considered in Denver (per the study sponsor's criteria, I had not failed enough chemotherapy treatments), but this immunotherapy trial at Northwestern held exciting promise. As a bonus for this trip, we were able to spend time with my sister Dee and brother-in-law Vinay upon arriving home; they and my parents had canceled their vacation plans to be in sunny Arizona that week in order to be with us instead.

Bright and early, March 6, Dee and Vinay accompanied Sean and me to my first immunotherapy appointment. We zipped into the city of Chicago, and we had a very long day of lab draws, seeing the oncologist, and waiting... Finally, I received the 30-minute immunotherapy infusion (the drug is called pembrolizumab). Other than being tired from the day, I felt good.

Nephews are the best

The next day was a special one, as my oldest nephew Grant turned 10. Our whole family took a day trip to the Shedd Aquarium and Oceanarium. It's never easy keeping up with the three nephews, but I took things even more slowly than usual and fell behind a lot. I found myself unable to breathe comfortably while getting around, especially when taking the stairs, and needing to sit down frequently.

By Thursday of that week, I was starting to worry about traveling to Houston for the ACPA convention. I was slated to leave the following day, but I wasn't confident I could safely board an airplane. My lungs hurt terribly, and I couldn't get my coughing under control at times. Reluctantly, I let my colleagues with whom I was supposed to present a pre-conference know that I was going to be delayed in arriving. Through the weekend, Sean and I booked and canceled several different flights to Houston. Tearfully, on Sunday night, I told my husband to nix the remaining flights - I wasn't going to be able to go to the conference, where I was slated to co-present several sessions and receive the ACPA Diamond Honoree Award. I needed medical attention.

The shortness of breath and persistent coughing became so bad that on Monday, March 12, Sean called and got us an appointment with cancer triage at Northwestern. Fairly immediately, I was put on oxygen to ease my breathing. After an x-ray, some blood work, and a simple exam, the nurse practitioner let me know that my lungs had so much fluid surrounding them that I was only taking in about 50% as much air as I typically do. I was functioning, literally, at half capacity.

Hospital room with a view

As a result of my compromised lungs, I wound up being admitted to the hospital. At the time, we expected it would be just for one night, but that eventually stretched to four. The nurse practitioner in triage promised she'd pull some strings so we'd get a nice room on the 15th floor. She wasn't kidding... we had a gorgeous view of Lake Michigan.

Lest you think my spouse Sean is anything but an amazing rockstar partner, know that he was there with me at every turn. And, if you haven't seen a 6' 4" guy curl up on one of those pullout hospital couch-beds, you might not be able to fully appreciate the sacrifices he made for me. Sean cared for me, made sure I was fed, and communicated with our families and friends. My parents and best friend Sarah came to visit, which helped keep me occupied as the long hours in a hospital bed went on and on. In fact, Sarah sat with me during the time I would have been in the Diamond Honoree ceremony. We saw the sweet intro video played at the ceremony, which my friend Noah compiled. Then, together, we watched our friend Jen's live stream of the ceremony (I had a cheering section on site! I'm so blessed to have great friends), during which my dear friend and former roomie Claire read remarks I had prepared to the other honorees and attendees. Sarah laid her head on my shoulder and got teary; she's known me since we started our master's program together, right out of undergrad. Hearing her say how proud she was of me meant the world. If I couldn't be in Houston, sharing that evening with Sarah and Sean was an ideal substitute.

Over the course of the five days I was in the hospital, the pulmonary team at Northwestern tapped and drained my pleural effusions three different times (pulling out more than 3 liters of fluid from just the left side alone). The procedures were painful and difficult for me. The initial draining was done in my hospital room, and Sean left in case the process was too much for him to watch. I nearly passed out during the experience, and I had to ask the doctors to stop. For the succeeding procedures, Sean came with me, as I was wheeled from one building to another in order to be tapped in the pulmonary suite.

And, before I left the hospital, the team determined that giving me a PleurX was my best bet for now, to keep the fluid from accumulating so much again. Don't know what a PleurX is? No worries, neither did I until they (surgically) shoved a catheter tube into my side - wedging it into the pleural lining around my lungs - coiled it up, and put a big bandage over it. Every few days, Sean unwraps the bandage and unfurls the tubing. Then, he hooks it up to a jar that looks kind of like a vase you might put on your mantel. But, it's not... apparently it's some negative pressure device that sucks the cranberry juice-looking fluid out of the lining.

I had to wear a serious mask every time
I left my room to see the pulmonologists

Before I could be discharged, we also had to be sure I was getting enough oxygen into my system. I did some slow walking around the hospital floor with a nurse, and, ultimately, I failed the test as my levels kept dipping below the desired threshold. I was sent away with an oxygen tank (a compressor and several more tanks were delivered to my parents' house) to use as needed.

For the next week, Sean and I stayed with my folks in the house I grew up in outside Chicago. As I was recovering, I didn't want to/really couldn't fly to Colorado, and I had another immunotherapy infusion coming up at Northwestern. Three weeks passed overall, with us making our home base with my parents. Their hospitality and generosity is boundless, and I'm thankful for their love. Finally, after this past Monday's pembrolizumab infusion - which went well overall and included a shot of Xgeva to help strengthen my bones - I was cleared to fly without an oxygen tank. Sean and I took a red eye flight back to Colorado. Our 16-year-old kitty Lizzie was elated to have us home; she'd been terrorizing our cat sitter and friends for several days with upset tummy issues.

It feels like this month was one giant trial. I'd like to report that things are looking up, but that's tough because I'm feeling emotionally and physically ravaged. The recent infusion has me quite fatigued, I have pain in my ribs and left leg, and I'm experiencing inexplicable blurriness in my right eye. I keep looking for the silver lining, but all I come up with is my stupid pleural lining... I know March is supposed to come in like a lion and go out like a lamb, but the month has been consistently leonine for me.

When I let myself relax and feel gratitude, I know I was gifted with quality time with family and friends in March. I missed a special occasion, but I was showered with love regardless. At least I can breathe again, right? I may chronically be in pain, but I can feel, I'm alive, I'm in treatment, and I'm back home. That's going to have to be enough for now; it's really all I can muster.

Terminal

“To have courage for whatever comes in life 
– everything lies in that.” - Saint Teresa of Ávila

With my comfort kitty, Lizzie

It was 5:00pm on Monday, February 12, when my cell phone rang. Sean had just headed out to wash the truck and pick up a few groceries. I was alone at home. And the number was a local one.

"Hi, Marybeth. This is Dr. Datko. I'm so sorry, I have news that we were not hoping for. Your cancer has spread..."

Even through the fog of this week, I remember the call clearly. I wasn't expecting to hear so soon about the results of my PET scan I'd had the same morning. The doctor was on vacation; we were scheduled to see her Wednesday. This news wasn't supposed to come. Not now. Not ever.

But, I kind of knew.

The weird pain on my ribs, the pleural effusion in my lung lining, the shortness of breath I'd been feeling, the persistent cough, the stupid rising CA-125 tumor marker - they were signs. My heart was in denial, but my head was telling me for weeks that sometimes the simplest explanation is THE explanation.

I am now a woman with metastatic triple negative breast cancer. There are cancerous lesions on my ribs, in my lungs, on my pelvis, and along several vertebrae. It also looks like there's been a spread of the cancer into lymph nodes in the center of my chest. The radiologist's report says there's evidence of "widespread metastasis."

After hanging up with the doctor, I immediately called Sean and told him to come home. I talked with my parents, my sisters, and several of my closest friends. It was an exhausting, tear-filled night. And, it stretched into one of the fastest and yet also one of the longest weeks of my life.

My stage IV cancer is no longer deemed curable. Our goal is now to find the best treatments available to prolong my life.

On Tuesday morning, we rushed to do an MRI of my brain to make sure the cancer had not spread there. Thankfully, that scan came back clean. Sean and I spent most of the day in tears, holding each other, and talking with our loved ones.

We saw our oncologist Wednesday morning about next steps for treatment. It was an emotional experience - seeing wonderful nurses (like Nichol and Jamie! Both were there to support me Wednesday) and staff who have worked hard to care for me over the last 15 months. The sadness and disappointment about my diagnosis was palpable. We spent about an hour and half with the doctor, talking through options and paths for treatment. As it was Ash Wednesday (and Valentine's Day), we went from our appointment to mass. By the time we got out of church, the support team at UC Health already had lined several appointments up for us.

At this point, we are hoping to get me into a clinical trial that is not purely chemotherapy based, since my cancer has already survived 5 different chemo drugs. Things are moving quickly to get me into treatment ASAP. We drove down to the Denver area Wednesday night, and, on Thursday morning, we saw an oncologist/researcher at the University of Colorado hospital in Aurora about options for clinical trials. We were excited to learn there's a promising treatment in trials there, and we signed up for it on the spot (knowing we can pull out if we do not get randomized to receive the experimental drug).

I’ll have an access port put back in my upper chest this coming Tuesday​, since any treatment will require that. The details of the different clinical trial options are all complicated. The bottom line is that each decision we make about a possible treatment affects a lot of other decisions. As of now, we're honing in on the trial in Denver and also meeting with a doctor at Northwestern in Chicago next week about trials there. In particular, one option at Northwestern is an immunotherapy drug trial we've been advised to explore.

The logistics of finding a treatment could be consuming... but the emotions of facing one's own mortality are taking center stage for me. I am brought to tears easily, thinking about the experiences I might miss out on and the people I could prematurely leave behind. But, I have a good, positive attitude in many ways. Prayer has grown increasingly essential for me. My faith is grounding me and reminding me what matters (along with what glory lies ahead). My soulmate Sean is with me at every step, in every heartbeat. I'm trying to feel more in control of my circumstances by eating any freaking cancer-fighting vegetable I can get my hands on, along with other recommended foods, and cutting added sugars from my diet.

If you're the praying type, we'd welcome prayers for wise doctors, the best treatment options to be available to me, God's strength in the face of my weakness, good decision-making by Sean and me, peaceful rest, a miraculous recovery, as much time as possible... and whatever else you think might help us. We'll also take cards, positive energy and vibes, your love, and your support. (We don't really need much "stuff" - I do encourage you to make a donation to a cause we love, if you want to send something.)

I know that - once again - everyone is going to feel bad for me, Sean, our families, and my closest friends. I get it, it's our gut reaction to say we're sorry when we hear horrible news. This aggressive cancer is a big ol' jerk. These results are not what we hoped for. And, honestly, the only terminal thing I wanted in my life was the Ph.D. I attained in 2012.

BUT... I'm (a) still fighting hard against this cancer, (b) an incredibly fortunate person, (c) blessed to have 40 fantastic years of living and loving so far, and (d) not giving up on miracles. Instead of feeling sorry for myself, I'm seeking to feel grateful for all I have and hopeful for what may come. When I was diagnosed, I asked that you would root for me. I need that now more than ever - your support, your energy, your love, your prayers, your hopefulness, your strength... and your belief that we can still defeat this. Thank you for being on my team.

Balancing light and dark

"Hope is being able to see that there is light despite all of the darkness." - Desmond Tutu

White Sands National Monument

I started writing a blog post last week while flying to meetings in DC and Atlanta. Be it divine intervention or simple user error, my drafted post twice disappeared from my new iPad. I was halted from complaining about my coughing seat mate (Cover your mouth, lady. Some of us have compromised immune systems!), or - more likely - writing myself into a gloomy place.

You see, I was looking out at the billowy white clouds through the window, thinking about how beautiful the brilliant blue sky was against the piles of puff. The observation made me think about heaven and what that might be like, which in turn led me to picturing my friend Miranda hiking those marshmallow mountains.

Then, in spite of the lovely scene I was viewing, I felt a wave of sadness. It's been nearly four years since we lost Ran. And, now I fear for my own life's end.

It's not that January was an altogether bad month. The year 2018 isn't off to a thoroughly detestable start. But, it's trying... and, I am finding it difficult to strike a balance between the good and bad experiences I've had.

My best friend Sacha reminded me that I don't have to ruminate on the tough cancer stuff in this post; you readers will understand if I seek to fix my eyes on the positive elements of the month. We kicked off the new year with fabulous friends and spent a long weekend mid-month trekking to New Mexico to see wildlife and national parks/monuments. Even on this chemo pill, I felt well enough to attend a very cool convening of higher education stakeholders in DC last week and spend a few cathartic hours with several close friends. From there, I was able to join the CAS governing board for a productive retreat in Georgia for several days.

"Chandeliers" of stalactites in Carlsbad Caverns

The darkest part of the month was when, on our tour through Carlsbad Caverns' enchanting underground chambers, our guide turned off all the lights. Humans don't get to experience that pure, complete blackness in life on the surface. We literally could not see our hands in front of our faces (yes, they make you try it!), and yet I was overcome by a serene peace in that lightless void.

Such a contrast with the anxiety I experienced this January... my mind flashes to the moment I felt a new lump in my left breast at the beginning of the month. We rushed to see a nurse practitioner and were referred to get an ultrasound, a mammogram, and finally a biopsy of the small bump I detected. Although I am thankful for how well cared for I was by the nurses, technicians, and doctors, it was a harrowing week. Another cancer scare, another little scar. And, all thanks be to God, another miraculous result. The benign lump is just fat necrosis where my original lump was removed and the area was blasted by radiation.

It was in celebration of that relieving news that Sean and I took off on our somewhat spontaneous road trip. I was able to spend quality time exploring our corner of the world with the love of my life. We walked among white gypsum sand dunes, gazed upon mountains that were actually an ancient fossil reef pushed up from below millions of years ago, and traipsed through an incredible wonderland beneath the surface. But, of all those experiences, I was most awestruck by the convergence of snow geese and sandhill cranes at Bosque del Apache National Wildlife Refuge. As the sun peeked over the horizon, thousands of birds flew up and circled overhead before settling back down in the water. To me, the sight was otherworldly (and the video here doesn't capture that full effect - I was busy being in the moment at the peak of their flight).

Yet, even with my brushes with heaven and peace and miracles, January wouldn't end without a last gasp of horror. I suddenly started experiencing a sharp pain in my ribs below my right breast the morning after I landed in DC. For the past week, I've had this agonizing ache which is made worse by coughing, sneezing, and breathing deeply. On Monday, we told our oncologist about this, and she referred us to the imaging center to get an x-ray. I had hoped to find I had a fractured rib, but the results are more amorphous (and possibly ominous) than that. It turns out there's a tiny amount of fluid outside my right lung, called a pleural effusion. The new fear is that this could be an early sign that there’s cancer in my lungs or liver which we can’t yet see or detect in blood work. Or, hopefully, it's fluid from the recent cold I had. Paired with the fact that my CA-125 tumor marker is still skyrocketing with every blood test, this news has my mind once again racing to the worst case scenario - metastasis. We'll have to wait and see, which is agonizing. I have a PET scan slated for February 12.

Between now and that next test, I turn 40. It's a milestone I'm proud of - I've experienced and accomplished a lot in those years. Most importantly, though, I've shared them with incredible people. In my head, I keep hearing the old American Cancer Society ad about a world with less cancer being a world with more birthdays... and, I'm praying for more of my own. More birthdays, more adventures, more people to love, more praise to give, more time to grow and learn and be and do - that's my wish this year.

Here's to a February with fewer fears and more hope.

"You are the source of all life, and because of your light we see the light." - Psalm 36:9

'Tis the season... of uncertainty

"The only thing that makes life possible is permanent, intolerable uncertainty; not knowing what comes next." - Ursula Le Guin

With my dear friends Graziella, Julie, & Kristan
plus their sweet kiddos!

Just over a month ago, I hobbled through New York City's Penn Station, trying in vain to keep up with Sean as he zigzagged through the terminal toward an exit and the line of waiting cabs. Wincing with each step, I felt the imaginary needles poking through the soles of my feet - just another delightful side effect of capecitabine (Xyloda) chemo pills. It had been an easy enough train ride from DC, where we'd been for several days visiting friends and working my CAS meeting. But, the fatigue, my aching feet, and the oft-present nausea were catching up with me big time.

I'd just finished the third cycle of the chemo pills, which were proving to be viciously brutal on my body. Sitting in traffic on the way to our upper east side hotel (close to Memorial Sloan Kettering), I fought to stay awake and keep the queasiness in my stomach at bay. By the time we arrived in our very pricey hotel room, I was exhausted. Collapsing onto the bed, I slept for hours. Fortunately, my independent husband was happy to find himself a place to sample beer and have a nice meal - as well as pick up some mashed potatoes for me - because I was down for the count. Aside from the actual doctor's appointment, I snoozed through basically every hour we were in NYC.

During the few hours I was awake (but not feeling very good), we met with a team of doctors at Memorial Sloan Kettering, including an oncologist who specializes in triple negative breast cancer like mine. The facility was very nice - bright, comfortable, and quite large compared to our humble cancer center in Fort Collins. I filled out a stack of paperwork while we waited for our appointment time.

Flanked by my awesome friends (and CAS staff assistants)
Lindsey and Noah

When we were called, we met with the first doctor, who reviewed my case with us. She asked a lot of questions and seemed confused by the amount of emphasis we'd been placing on the CA-125 tumor marker numbers. She let us know she'd be consulting with Dr. Traina - the specialist we'd come to see - and that they'd be in to discuss things with us further.

Once we were settled in the exam room, Dr. Traina came to meet us. She radiated warmth, introducing herself as Tiffany and clasping my hand in both of hers. Taking a seat on the exam table across from me, she began by telling us she was excited to be able to give us good news. Based on her review of my images, records, and pathology slides, she saw no evidence of metastatic disease or recurrence of my cancer. In fact, the doctor shared that - in her view - we were placing too much weight on the CA-125. Apparently, in 2006, the National Institutes of Health (NIH) offered doctors guidance on the CA-125, saying it resulted in too many false positives to be considered reliable. Of course, Dr. Traina explained, we couldn't disregard the marker since it had been elevated when we discovered my original tumor. She indicated it was likely rising now since my body was under assault by the chemo pill, the marker is very sensitive to inflammation, and she expected the number would come down by the time we completed this chemo treatment. Dr. Traina said she thought we were pursuing the right course of treatment, taking the capecitabine and seeking possible entry into an immunotherapy trial for after this. Such a contrasting perspective than what we'd been hearing from our own oncologist! And, yet... the information wasn't drastically different.

Buoyed by the positive spin on our situation, Sean and I headed back to our hotel. I crashed for a few more hours, and we headed to LaGuardia for our return flight home. Still feeling nauseated, the cab ride seemed interminably long, and I was quite queasy by the time we made it through security. We found seats near our gate, and I tried to prepare for the four-hour flight. After a trip to the restroom, I decided to take an Imodium. The pill was barely past my lips when I felt my stomach lurch... "Nope, nope, nope," I said aloud. Sean looked at me and then quickly reached into his backpack for a barf bag (thank goodness they dole those out freely at our cancer center, and he'd had the foresight to snag one). I heaved into the bag, very aware of the fact that the people sitting adjacent to us were staring and murmuring. A kind man passed napkins to me, and Sean assured the folks around us that I was on chemo and not spreading a stomach flu. The rest of the trip was as uncomfortable as you might imagine.

I rested and tried to recover through the weekend, but it was rough. By Monday morning, when we were slated to meet with our oncologist here in Colorado, I was too weak to sit upright for very long in the waiting area. Even so, armed with the good news from our second opinion, we were optimistic about the appointment. Sadly, those positive feelings weren't long-lived. Our doctor bluntly said she wasn't sure why the New York doctors were so upbeat; she disagreed with their thoughts on the CA-125, saying "maybe I'm just a pessimist." In her defense, she also had new test results. Prior to our trip, we'd had blood drawn for a test that looked at cancer cells in my bloodstream. Those results, which we didn't have in New York, showed there are still living cancer cells in my blood. The test also pointed toward a deficiency with my gene that is supposed to suppress tumors - mine is basically broken. In her direct manner, our oncologist said she thought I might have a 2% chance of not winding up with another tumor.

TWO PERCENT. I mean, that's a type of cow's milk... not a percentage you want to hear from your cancer doc. Needless to say, we were deflated.

The only silver lining of our appointment that gloomy Monday morning was that our oncologist agreed we needed to change my dosing of the chemo pill. At Sloan Kettering, Dr. Traina recommended we switch to a one week on/one week off cycle rather than continuing as we had been, with me taking pills for two weeks before a week break. Our oncologist agreed, and we even decided to give my body an extra week without the pills before starting the new regimen.

Embracing the spirit of the holidays

The next day - just four days after our DC/NYC trip - we headed to the Chicago area for Thanksgiving. Physically, emotionally, and mentally, I was wiped. It was wonderful and rejuvenating to be surrounded by my family, although it was tough processing the uncertain and seemingly conflicting news of the past week. I dare you to explain to a 7-year-old and a 9-year-old what's happening inside your body on chemo (spoiler: Pac-Man made an appearance). In spite of the depressing nature of talking about cancer a lot, I found plenty to be thankful for. Laughing with my cousin and brothers-in-law, chatting with my sisters, hugging my parents, seeing Christmas lights with my nephews, socializing with extended family, listening to the voices of my loved ones while trying to nap - the holiday was the best it could be.

For the past several weeks, life has returned to more familiar patterns. I have continued to experience the fatigue and the hand-foot syndrome associated with these chemo pills, but other side effects have largely subsided. I feel more focused in my work, and I'm increasingly alert throughout my days. I do not miss the high grade diarrhea, occasional vomiting, and endless nausea. I actually went for a walk through our neighborhood this past week; I haven't felt able to do that in months!

I guess this is the new normal - living with the unknown, worrying on-and-off about what's to come, and wondering if I'll ever feel whole and healed. Last year, I mused about having cancer at Christmas. This year, I've really embraced the anticipation of Advent. I'm awaiting my savior's birth, remembering that miracles happen every day, readying my heart for His arrival, and trying to keep uncertainty in perspective. Before Christ's birth, people waited 400 years to hear from the Lord (He'd been silent all that time, after having spoken to folks in the old Testament). I'll do well to practice the kind of patience, vigilance, and hopefulness needed by those soon-to-be-Christians. We never know what might appear if we keep the light on.

"The people walking in darkness
    have seen a great light;
on those living in the land of deep darkness
    a light has dawned." - Isaiah 9:2

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!

Mystery and miracles: Part II

"I have seen many storms in my life. Most storms have caught me by surprise, so I had to learn very quickly to look further and understand that I am not capable of controlling the weather, to exercise the art of patience, and to respect the fury of nature." - Paulo Coelho

Wearing my new amethyst necklace from
my cousin Meagan

After the crazy week of tests and scans in early September, I finally was cleared to start the chemo pills. We didn't want to waste another minute, so I took my first dose of capecitabine on September 18. The regimen was fairly straightforward - I took 4 pills in the morning after a meal and with a full glass of water, and repeated the same drill in the evening. The pills aren't the kind of thing you run to Walgreens to pick up; they were delivered to our house by a specialty pharmacy in a bag labeled "CAUTION: Chemotherapy material" with biohazard symbols emblazoned on it. So, yeah... I don't touch the pills. I pour one at a time into the medicine bottle cap and then transfer it to my mouth. For about 10 days, I followed that routine easily and without complications.

In the meantime, we needed to tackle the inflammation issue that *might* have contributed to my elevated CA-125. After all the traveling to and around Alaska (10 flights in 8 days!), I had some swelling in my upper left arm and breast. Unfortunately, for breast cancer patients, developing this condition - called lymphedema - isn't uncommon. During my surgery, several lymph nodes under my left arm were removed, and then the whole area of my underarm and breast was irradiated for six weeks this summer. Lymphedema occurs when your lymph system has trouble draining properly. All the damage to the lymph nodes and channels in my breast and underarm caused lymphatic fluid to pool in several areas, created edema, swelling, and tenderness.

Inexperienced with post-surgery and post-radiation healing, I didn't know this was all happening! My bras fit less comfortably, but I just blamed it on weight gain. I thought the swelling was just part of the healing process. Oops. We were four days into the scariest week of my life before the oncologist realized that I had developed lymphedema. Of course, we cannot wholly attribute the elevated CA-125 to this inflammation, but it may have exacerbated it.

So... I guess I wasn't seeing enough specialists, and now I have new friends in the Cancer Center's Wellness Place. About once a week, I go in for physical therapy for my breast/arm and to get a lymphatic drainage massage. I also get to do a daily manual lymph drainage self-massage (We just taught Sean how to do the massage for me, too. He's not the slightest bit upset about that 😉). Oh! And, no more cute strappy bras with underwire. I'm to live in garments that have compression to keep the lymph fluid from pooling in any one place, even when I sleep. Hello to a lifetime of Playtex and sports bras.

Morning routine - chemo pills and lotion

Anyway, back to that new chemo... I was to continue taking the pills for 14 days, and then slated to have one week off the pills before beginning a second cycle. On day 11, I started having redness and minor pain in my hands and feet. A less-than-delightful side effect of capecitabine is Hand-Foot Syndrome, which happens as small amounts of the chemo leak into the capillaries in one's hands and feet. There's no way to stop it, and the best tactics for minimizing the issue include using boatloads of lotion - specifically Udderly Smooth Cream - and reducing use of your hands and feet. Also, no really hot water, no baths, no long showers, no dishwashing (bummer...). By day 12 or so, I could barely walk around the house. And, then the nausea and diarrhea started in earnest, coupled with a few bouts of vomiting. By the time I finished the last dose, I was a shell of myself, unable to complete basic tasks or keep any food in my body. On Wednesday of the off-week, Sean called the nurses at the Cancer Center, and they had us come in for blood work and to see a PA. I basically had to lay down the entire time; I had no energy. Believe me, in my experience, this chemo pill was way worse than the chemo infusion treatments I had last winter and spring.

Because I was feeling so horrible, the PA recommended we get an IV bag of fluids pumped into me ASAP. I headed up to the infusion center - a place I hadn't visited since March - for the IV. It took about an hour, and we headed home to rest.

I started feeling a bit better throughout Thursday, and by Friday I was ready to run some errands. But... my right arm felt strangely achy and full. I tried convincing myself I'd just slept on it funny, but even my addled and exhausted brain couldn't be fooled. It felt like when I was diagnosed with a blood clot last January. Since I'd had an IV in my arm just two days prior, we suspected that might have caused a new clot. Sean and I spent our Friday night (woo!) at the imaging center, where it was confirmed that we would be resuming the twice-daily blood thinner shots of yore.

We'd really had enough at this point. What more could we possibly take? We survived the weekend and the side effects largely dissipated. On Sunday night, we popped over to the UCHealth lab to have my blood work drawn; we would be seeing the oncologist the next day and then starting the next round of chemo pills. (I'd already determined I'd request a reduced dose for the pills!) With lymphedema in one arm and a clot in the other, the poor phlebotomist had to use a baby needle to draw a vial of blood from my hand. Once again, we got good results for the metabolic and blood count panels. And, we waited for the CA-125.

It came back almost two and a half times HIGHER than the last result for it three weeks prior.

After feeling physically ill for over a week, I transitioned to being emotionally destroyed. Sean and I were zombies until the next day's appointment with our oncologist. Let me tell you - it does not help when your trusted, whip-smart, highly-credentialed doctor is baffled. We talked through my chemo experience, agreed it was extremely awful, and determined that we'd reduce the pills by 25% for round two.

My peeling hands and thumbs - a side effect of this chemo

But, the CA-125 posed a whole other dilemma. In one breath, the doctor said we shouldn't place too much weight on a single blood test. And, yet, since it corresponded with being high during my diagnosis last fall, we can't ignore it. I had clean scans just a few weeks ago, so where is the antigen coming from? Real talk, friends... the doc believes there is cancer somewhere in my body right now. It may just be floating in my bloodstream, seeking a place to build a tumor. Another (hoped for) possibility is that these elusive cancer cells are being killed by the chemo and releasing the antigen into my blood as they expire. Or, the number could be related to inflammation in my body; I did have those horrible side effects from the chemo blowing up my digestive tract, menstrual cycle, hands, and feet. Bottom line, we need this current round of chemo - the one I complete today - to help us know more. At this point, our plan is that (a) if the CA-125 comes down after next week's test, we'll continue on the current course or (b) if the CA-125 goes up - whether it be by a little or a lot - I'll be getting new tests and scans as well as going to get a second opinion. My doctor did her residency at Memorial Sloan Kettering Cancer Center, so she'd like us to go there or to MD Anderson Cancer Center to get a fresh perspective on my case.

This is all a lot to deal with, and I am so blessed to have my husband Sean supporting me every step of the way. My prayer game is also on point - I'd be lost and hopeless without my faith in God's love, Word, will, and plan. And, I have the most amazing and selfless parents ever. They dropped everything and came out here for a week to keep me company, give me shots, and help around the house and yard. With my wonderful sisters supporting me from afar and my family/friends rallying around me, I am holding it together. Seeing a counselor at the Cancer Center helps, too!

Thank you to all of you reaching out to me. I'm sorry that in the midst of this struggle, I don't have much energy with which to reach back to you. The messages and gifts I've received are wonderful reminders of how much people care. Keep sending your prayers, healing vibes, and love - they matter a lot 💞

For the coming week, as we wait for our next decision point, I'm trying to keep a sense of humor and hope about how the chemo is working in my body. (We know it's doing something, since it's giving me side effects. Fortunately, we're managing these better so far this round!) I picture the chemo like a little Pac-Man making it's way through my bloodstream, chomping any and all cancer cells it encounters. Root for Pac-Man, friends!