“The Lord will guide you always; He will satisfy your needs in a sun-scorched land and will strengthen your frame. You will be like a well-watered garden, like a spring whose waters never fail.” – Isaiah 58:11
(NOTE: I’ve been trying to draft this post for almost two weeks now — seriously, these pain meds are NO JOKE.)
New Year’s Eve.
My entire life, NYE has been an evening of watching the ball drop from my TV screen, eating too much, a variation of family fun night, watching Hotel Transylvania (Elizabeth O., we WILL watch #3 together, haha), or dressing up and going out. And the next day is ALWAYS my vision board/journaling day— reflecting on the past year and contemplating the fresh, squeaky-clean, 365 days ahead while creating my list of goals (I’ve always preferred goals over resolutions).
But this time around, these two days were a blur of trying to fight excruciating pain, not being physically able to eat OR sleep, and finding myself uttering the words, “I don’t know if I’m going to make it through this,” to my family gathered around my bedside on New Year’s Eve, laying hands on me and praying for a miracle.
For the first time in my cancer recurrence and journey, I actually felt scared about being at home without a clear plan for pain management, and the meds I had been taking over the previous months were no longer even touching the pain. Good sleep was out of the question — I slept sitting up because of how swollen my neck had gotten, and we already knew these to be strange cystic lymph nodes encapsulating necrotic cells (from the ER visit and CT scan in November) that none of the doctors we consulted with would touch; these nodes continued growing despite my stopping IVs and injections for a bit to allow my body a break for balance. And just the concept of food was both physically and emotionally draining — I was now down to all liquids because of how painful it was to chew and swallow.
My functional medicine doctor (an absolutely incredible woman I began working with in the beginning of November) had suggested Dana Farber Cancer Institute in Boston for a second opinion a few weeks ago, but I wasn’t in any position to travel given my condition. So we prayed. Hard. Daily. For hours. As a family, as individuals, as groups of friends laying hands on my weak body. I spent most of those sleepless nights begging God to heal me or take me home because I just didn’t know how to handle it anymore.
But things just kept getting worse.
On January 4th, I was scheduled for an MRI at the University of Rochester. We arrived for the appointment, only to have me writhing in uncontrolled pain in the waiting room and the inability to be seen right away by anyone in the ER because the wait time was approximately 18 hours.
This was it. Decision time. I lifted my tear-stained face to heaven asking God with trembling, weak hands to give us traveling mercies and guidance as my mom and sister packed up the car in under an hour and drove us the six hours to Boston.
Totally in blind faith.
It was the longest, most painful car ride of my life. I held on to the best of my ability, Veronica driving and squeezing my hand, my mom gripping my shoulder and giving me pain meds as we sped along the dark highway and prayed fervently for answers and favor once we arrived.
Lo and behold, the ER at Brigham & Women’s Hospital was almost completely empty when we pulled up — I was seen and medicated within half an hour of arrival, then promptly admitted following a CT scan of the neck.
Things happened so quickly, and I can only say that GOD DID THIS. He orchestrated the whole thing so perfectly…I can’t even explain the physical, emotional, and spiritual relief to the answers to prayer we received that night.
After being admitted to the palliative care floor of the oncology unit, I immediately started working with their fantastic care team and pain management. Turns out the candida infection we’ve been treating on and off for the past few months (presenting itself as oral thrush) hadn’t completely left my body either, so that was immediately tackled as thoroughly as possible, too. For the first time since the beginning of October, I felt we weren’t “pulling straws” and “hoping for the best” — now, we had a helpful, caring, compassionate, team of medical professionals who were going to do everything they knew how to support me and my family.
A huge burden had been lifted off my shoulders.
January 6th, two days into hospital admittance, we met with one of the top head & neck oncologist who also works closely with palliative care. From what I had been briefly told about Dana Farber Cancer Institute before I got here, they are top-notch in their advances in medical technology, clinical trials, and surgical procedures — especially for oral cancer patients 45 years old and younger.
Back in 2018, when I was first given the news about recurrence and told by half a dozen oncologists that a second invasive surgery was the “only option” for saving my life, I had heard God’s voice loud and clear that I would NOT have that surgery — it would have meant losing my entire tongue, as well as undergoing intensive radiation and chemo. I had once again been given the “six months” expiration date if I refused treatment, and told if I didn’t do it their way, they wouldn’t help me.
As most of you already know, I had chosen once again to follow my intuition, especially after going through so much back in 2015. I also believed there was no way I had been “randomly” introduced to alternative treatment options and the knowledge of working WITH your body to heal, and if I felt so strongly called to this method of healing then it was for a reason and I needed to see it through.
I had been so confident all summer in my alternative treatment plan and healing protocols that I never saw the autumn months that would blindside me, or the decisions I would find myself up against right after Christmas. Sure, I had heard that many times in the healing process, it “gets worse before it gets better”. But the AMOUNT of worse had left me questioning everything I thought I knew.
By the end of December 2018, I had truly released it ALL to God — if He wanted me to now go ahead with surgery, if I was to now lose my tongue after all these months, if the cancer had indeed metastasized and I no longer had a choice…then I was willing to go whatever route He had for me. I knew that no matter the outcome, this would all be for His glory and my good. That if I were to lose my physical “voice”, there’s no way of shutting me up about my faith or my determination to bring Him praise through my life story.
I knew He would somehow create beauty from the ashes.
So as we sat down with this kind, caring, compassionate, and honest oncologist to go over my case, I felt so much peace washing over me. I knew God was directing this whole conversation, right up until this very moment, in this very room.
Which is why it came as a huge surprise to me when this top oncologist, who is published in medical journals across the country, participates in clinical trials for head & neck cancers and specializes specifically in the 45 & under age group for these cancers told me that quite frankly…
This cancer is incurable. You will not survive.
Once oral cancer returns, the only options available are painful, extremely reduced quality of life, and less than 30% guarantee of any sort of reduction of the cancer itself. Even if I HAD chosen immediate rounds of radiation after the surgery back in 2015, there would have been a less than 60% chance of the cancer returning OR causing more issues to the head & neck cavity over the next few years. Mortality rates of head & neck cancer patients are extremely high — despite all of the “research and advancement” that has been done over the past 25 years.
He said all this in a straight-faced, no-nonsense, to-the-point doctor sort of way. I nodded and said I understood, but I truly was looking for quality of life, not the possibility of living a few more months…maybe years IF “I got lucky”…in absolute hell. He then leaned toward me with so much compassion in his eyes, running his hand through his hair, suddenly bringing himself down off the “authority” pedestal to meet me at a very human level.
“Unfortunately, there’s honestly no surgery that I can offer you that wouldn’t lead to horrible disfiguration and no treatment that wouldn’t lead to reduced life expectancy,” he said. “Off the record, Sabrina, if I was in your shoes with this recurrence, I wouldn’t do it either. Yes, I realize these are the treatment plans we work with every day. And I’m confident that in the future we will have a better way of treating this very complicated and deadly cancer. But frankly, if I were you, I would manage my pain and live out the rest of my days as comfortable as possible because there’s no guarantee, and I’d rather not suffer.”
In that moment, I realized that what I had heard from God back in April was confirmed yet again — I would not be having any surgery for this recurrence.
It was a literal miracle I had even made it this far, given how advanced the cancer had gotten. A PET scan was scheduled for the following day, just to assess the extent of the tumor and the lymph nodes, as well as any spread which, as the oncological team confidently concluded, was probably in my lungs, if not also my liver, by this point in time.
January 7th, I was wheeled down to the radiology department for the PET scan. It was a very draining day, on top of still trying to get the pain medication managed and attempting to come to terms with the news that this cancer had been “impossible to beat” from the very beginning. I prayed and cried, still trusting the Lord for His guidance and strength, but also facing very human emotions of facing your mortality YET AGAIN at such a young age.
But that evening, when the oncology team stopped in to check on me, they gave me some bewildering news: the PET scan showed ZERO metastasis of disease! Everything was still 100% localized to my tongue and the strange cystic nodes in my neck!
So, 2019…here we are.
I am very thankful and grateful for everyone praying and checking in on me. I don’t have the energy to keep up with all the texts, social media messages, and calls, but please know that they brighten my days, keep a smile on my face, and truly encourage me. We’re now going on 12 days in the hospital without a clear plan or picture of when I’ll be discharged as we continue to experiment with pain medications and dosing. This is so VERY different from the 10 days I spent in the hospital after my initial surgery in 2015!
I’ve met with team after team of specialists here at Brigham & Women’s Hospital to get ideas of how to best handle my lymph node situation, and have been given the same message each time: “Sorry, we wish there was something else we could do. Unfortunately, this is the nature of the beast.” While this repeated negativity is hard to hear, I’m not giving up hope. I’m not taking “there’s nothing that can be done” and the sympathetic pat on the hand for an answer. I will continue to do the best I can for my body, pursue wholeness, and pray for a miracle.
When I’m home, we will be working with pain management as well as restarting the treatments that have gotten me this far. With the incredible support of my family, I will continue looking for options outside of the conventional to relieve this pressure from my neck, and believe the miracle of healing is coming.
I choose to face this battle with a heart of faith as I seek and follow God’s plan. I claim those biblical promises of healing for myself — because He’s never, ever failed, and He won’t start now.