1/2/2020

Matt: I was on edge that cancer was even on the list of possible reasons for a paralyzed vocal cord. It sounded crazy to say out loud and unbelievable to friends when they heard me say it. The ENT ordered a Computerized Tomography Scan (CT) to rule out anything so serious. There was a good chance I had a virus or simple environmental stress to work through and the voice would return.

The CT scan itself went well and only took 20 minutes. Afterward I stopped at the store to grab some comfort food for breakfast: donuts, sausages, and chocolate milk. After only an hour or two the ENT called and asked me to meet him downtown to go over my CT results later that afternoon. Annie and I took Ramsay for a walk before going to the appointment, but I knew the results were not going to be what I wanted to hear.

Upon walking in the room, the doctor’s face and tone were alarmed and urgent. He told me how sorry he was that he had terrible news. I had cancer.

I’ve forgotten his exact words, because everything after his diagnosis seemed like it was in another language, or like he was talking to someone else. Someone who had done terrible things with their life, or were full of harmful vices, or had mistreated themselves their entire life and taken for granted God’s beautiful gifts. He said I had multiple lesions spread throughout both lungs, with an unusual concentration in my right lung that was quite large. The cancer had metastasized to my liver, several lymph nodes, and even reached my brain. The vocal cord was impacted by a swollen lymph node along a nerve somewhere in my throat or chest.

There was no possible way that this was real. Instead of New Year’s resolutions to be excited about, I was placed at the base of what felt like an insurmountable mountain. He asked what questions I had. I wanted to ask what I do about this, but that wouldn’t come from the established medical world for another month.

My raw fear was matched only by my confusion as how something so widespread had no detectable symptoms apart from my voice. MRIs were ordered and meetings with a pulmonologist (lung doctor) were scheduled. The pulmonologist would be coordinating things from here. As of this writing I have been living outside my own body since the diagnosis. Fear took me to all manner of what-if scenarios and I left the ENTs office with my head spinning.

I drove home. We made dinner. Stunned silence gave way to sheer wailing before God. I have no words for how shattered I felt, how frightening the initial diagnosis, how little hope I felt, and how isolated I felt. I didn’t feel angry. I felt confused and I didn’t have a plan. I had been reduced to a single thread, hanging onto my God.

After dinner I called my bonus/step-mother-in-law who, by God’s grace, has healed cancer through diet choices and alternative treatments. I asked for prayer as well as what resources she would recommend. Much more on diet in the coming posts, but in short, gone are the days of donuts (sugar), sausages (processed meats), and chocolate milk (more sugar, dairy). James 2:26 says ‘…faith without works is dead’ and I intend to walk out my healing process in faith that one of God’s tools will be real, natural foods. Foods that Western Medicine is only beginning to include with integrated treatment plans. Foods that have known cancer fighting properties when consumed over time, at therapeutic doses. For the curious, you can learn more at https://www.chrisbeatcancer.com/, or watch either of these documentaries: Forks Over Knives, or Game Changers. In the same way that Job had no way of knowing the timeline of his healing and restoration, I do not know how long my journey will be. Making a drastic dietary change and including a few specific foods was at least something I could do. Following the footsteps of other faith-centered cancer survivors was all the convincing I need to get started.

1/3/2020

Through disbelief, I knew I needed to start getting the word out. I told my family and a few others. Sharing my new reality brought even more unanswered questions. The last phone call I made that morning was to the lead pastor at the church we are a part of. James 5:14-15 instructs “Is anyone among you ill? He should summon the elders of the church, and they should pray for him and anoint him with oil in the name of the Lord. And the prayer of faith will save the one who is sick and the Lord will raise him up — and if he has committed sins, he will be forgiven.” The pastor put out the word, the elders were coming to our house later that night for prayer.

So many powerful prayers and declarations were made that night. Annie and I both felt loved, supported, and encouraged. Roughly a year ago Annie and I attended a night of prophetic word at church. The visiting prophet spoke specific words to certain individuals who had agreed ahead of time to fast, pray, and prepare. I had simply attended to worship in the Spirit and be a part of the night. Before the final prophet was done for the night, he looked around the room and pointed at me. He said that God was stretching me, and increasing my capacity for Him. During the night of prayer with the elders, I recalled that prophetic word and everyone agreed that God does not allow trials to fall upon His people in vain. (James 1:2-4). I have a journey to walk, but it will not be alone, and God will accomplish His purposes even though I can’t see or understand them.

A Note From Annie:

I tided the house that day in anticipation of these guests–also I tidy as a way to process and organize my inner-world. My thoughts swirled as I swept and occasionally picked up something to put away. The thoughts that came often were about being a horse owner (very costly in both time and money) in light of this diagnosis–I’m going to have to sell.

“I didn’t ask this of you.”

The thought dropped into my mind and completely halted the runaway train that had carried my thoughts. God spoke to me words of truth while I had been inventing lies for myself. New thoughts of hope, promise, faith, future, mission, and purpose arose–I praised the Father for what He was planning to do.

I read recently that praise is the act of faith that comes before a victory (https://heartofworship7.com/2017/05/06/praise-confuses-the-enemy/). One of my pastors said on this night of prayer for healing, “The enemy’s strategy is so stupid; he tries to use things to drive us away from the Lord that in fact drive us to cling more tightly to Him.” Reminds me of Genesis 50:20 ²⁰ As for you, you meant evil against me, but God meant it for good, to bring it about that many people^[b] should be kept alive, as they are today.

We prayed for healing, yes, and we also praised the Lord for His goodness yet to be revealed.

1/5/2020

Matt: Our church provides and encourages folks to get prayer at the conclusion of each service. After church I went to the front with Annie to receive prayer by two women of God with giftings of the Holy Spirit. One of the women, who possesses the gift of prophecy and had no prior knowledge of my diagnosis, said to me ‘Matt, God wanted me to tell you, you have faith, expect Him to move.’

2nd opinion in Seattle echoed the 1st. About 5% of people with non-small cell lung cancer have a change in the anaplastic lymphoma kinase (ALK gene). This results in an abnormal ALK fusion protein. Matt’s RNA analysis showed a ALK translocation while the DNA analysis did not.

The ONLY recommended treatment is a targeted therapy that only affects cancer cells. It is an oral medication that is a specific protein inhibitor.

We are astounded at the developments that have been made in the pharmaceutical world—this treatment option was only discovered in 2010 and patented 2012!

Our hope remains in Christ to do the ultimate work of full bodily healing (and that He may potentially do it through a variety or combination of therapies) and we trust in the wisdom of Proverbs 16:9 “A person plans his course, but the LORD directs his steps” (NET Bible)

God will use whatever plan(s) of action we make in order to take us where we need to be for health in body, mind, and spirit.

This is our belief and declaration!

12/23/19: I was thrilled that I got to go to the ENT appointment with Matt since I was on Winter Break. Voice has always been a particular interest of mine in the SLP world, but I know that I came by it honestly from having a very musically-talented family (I think we only know how to sing harmonies). It is extremely uncommon for a school-based SLP to have students with voice disorders, but I’ve had TWO–so I’m kind of an expert in my district.

The ENT looks at Matt’s intake chart and comments on his sophisticated terminology: muscle tension dysphonia. Matt points to me and I confess my profession. Matt shares a few more details at the ENT’s questioning: couldn’t hold breath well, felt winded going for a run, some choking on gulps of water, hoarse voice, pain on the right side of the throat (now resolved). I mention STRESS again. The ENT says plainly, “I think it’s a paralyzed vocal cord.” ENT checks Matt’s ears, nose, mouth, and palpates the neck–nothing’s out of the norm.

Time for the scope. I told Matt that I volunteered to be the guinea pig in grad school letting a clinical fellow SLP try out her new scoping skills on me in front of the whole cohort–no big deal! A little lidocaine in the nose and the flexible scope heads to the back of the throat to peek down at the vocal cords.

The ENT asks Matt to make some vowel sounds and sing a scale and swallow and cough (or some variety of vocal cord activities). There is a ton of movement with the right vocal cord and very little to none with the left. Yep, the left vocal cord is paralyzed. It’s what has made Matt’s voice hoarse, allowed water to slip into the airway, and the right cord has been overcompensating and the overworking of that side has been the cause of the pain.

What’s this from? Probably a viral attack on the left recurrent laryngeal nerve (my undergrad studies are flooding back)–kinda like Bell’s palsy. -Yeah, Matt did have a bad cold this fall- It should resolve spontaneously in about 6 months. Or it could be a number of other things–cancer included. The ENT ordered a chest and neck CT just to see if there was anything visible impeding the nerve function.

Matt and I go get a coffee and pastry. Matt is upset: “I don’t like the big words the ENT used.”

“Oh my gosh, I did, it was so cool!”

“CANCER!?”

“Oh, NO! I meant the actual big words like, flexible endoscopic laryngoscopy. You’re fine, it’s not cancer.”

“Well I don’t appreciate how lightly you’re taking this when I’m obviously upset.”

“Sorry.”

Drives home in silence.

12/1/2020 Matt decides not to serve this week in post-service prayer. His voice is just too weak to be heard over music and conversation.

12/16/2020 Matt has his full physical with the primary care physician. He is a picture of health other than that hoarseness. He gets a referral to the ENT from primary care, but it isn’t for any sooner than the one I’ve already got scheduled for him. Seriously, he is a picture of health the last day of him being a 36-year-old! He doesn’t brag too hard about his excellent blood pressure knowing that mine is always significantly elevated by the “white-coat”.

We cancel the birthday get-together on account of his voice–several folks can’t come anyway–“maybe next year,” we say.

Woohoo, there has been a cancellation at the ENT office, so we’ll get in before Christmas!

-Annie

We completed 100 miles cycled in the Peach of a Century 8/25/2019. We did it to remind ourselves that we CAN do hard things.

October: Hmm could be fall allergies…people can develop new allergies anytime. Try Claritin. It seems to help. It’s odd that your voice gets so weak in loud environments where you really have to project. You feel awkward in busy, crowded environments now.

November 8, 2019: You can’t hold your breath right now; that’s weird. Yes, I did have a VERY emotionally draining and stressful day and I think you’re empathizing with me–emotions are often reflected in the voice. Tomorrow is Saturday and we have a relaxing day planned.

Later November: You are stressed out by several different things and I think your voice is holding all that tension. The right side of your throat is painful–muscle tension dysphonia I deduce. I gather research articles, therapy materials, youtube videos and offer to be your SLP (and find that it’s difficult because I am also your wife). Pain subsides, voice is sometimes better but…

I think you should see an ENT since it would be wise to rule out anything else going on…and then maybe you can see an SLP that has actually specialized in adult voice therapy (no more breath and phrasing work on “Her grandmother, Harriet Hill”). I set up an appointment with primary care–they might get you in faster if they order the ENT consult, but I still get you on the books for the ENT’s cancellation list. Your voice is not reliable for phone calls, so I put myself as the primary contact.

We cancel a few fun activities because they would just be too loud for you to participate in. We often have to play the game “telephone” where you tell me what to tell other people and sometimes I just talk for you–it’s weird.

-Annie

In Annie’s words:

On Friday afternoon (1/31/2020) we met with the oncologist for the first time. The doctor gave us the results of DNA testing, but still didn’t have RNA testing completed on the cancer cells. We were told that the RNA results would not change the treatment plan (gamma knife radiation for brain tumors and several rounds of the kind of chemo that would make Matt feel really lousy plus a couple other supports: immunotherapy and another maintenance chemo for lung and liver tumors). Hearing words like “incurable” can be devastating, and was certainly hard for us, but our faith remained at the forefront (mostly) of our minds.

Monday night (2/3/2020) Matt finally had the courage to email workmates and long-time friends about his health news. He had delayed until he had an actionable plan to share knowing that that’s often the first question. Just after sending that email he received an email from the oncologist saying that the RNA testing was complete. It showed that there is IN FACT a genetic mutation cause for the cancer (expressed in the RNA, but not the DNA) AND that there is a treatment (a long-term oral chemotherapy) that has few/well tolerated side-effects. This treatment should disrupt the continued growth of tumors and also shrink tumors, even ones in the brain–doctors won’t say it’s a cure, but it could help get Matt on his way there!

Matt will still get a 2nd opinion on a treatment plan in Seattle on Monday (2/10/2020) as they are first-in-line with research and clinical trials, but we are overjoyed at this new possibility we heard last night!

For those who haven’t heard or that I haven’t told, Matt’s only “symptom” has been and continues to be, a hoarse voice due to a paralyzed vocal cord (no pain, no coughing, no seizures, etc.)–amazing! We both have been gaining back some of the weight that stress plus a raw plant diet took off.

Gratitude:
We are so grateful and humbled by the outpouring of love, care, prayers, encouragements (words of hope and scripture), hugs, smiles, gift cards for groceries, grocery store runs and offers to care for our pets (even cleaning horse stalls!). We thought one of the hardest things would be to tell people about our difficulties, not knowing the kind of responses we’d get, but it has ended up being a huge blessing and encouragement. So, thank you! Thank you from the bottom of our hearts!

We’ll go back and blog mileposts 1-11 (lots of twists and turns!) and may have to intersperse “where are we today” along the way…mileposts 13+