Matt: I had a difficult start to 2025. In retrospect, I am fortunate to have survived my 10-day stay in the hospital back in January when I had pneumonia. Also, the presence of the hole in my esophagus meant I needed to have a feeding tube reinserted into my stomach AND make a decision on how I wanted to deal with my esophagus. This felt like taking two steps back to take one forward. However, the specialists in Seattle that I’m now working with have been great.

My initial conversation with my new gastroenterologist (GI) doctor in January was helpful and honest. My lung cancer limits the doctors’ ability to repair the hole in my esophagus with an invasive surgery. Maybe this is a blessing in disguise. The doctor also shared the stark reality that sometimes these holes never repair themselves. Having dealt with the emotions around words like ‘incurable’ and ‘may never heal’ from medical professionals before, this didn’t phase me much. However, it’s never fun to hear.

My Seattle GI doctor then described a small device used for patients with injuries or defects within the walls of their heart that could be repurposed to help me in my situation. The off-label use of this device would involve installing a metal plug in the hole in my esophagus ‘in hopes that my body would heal around the metal plug’. My intuition told me not to proceed with this as there can be complications and it is not guaranteed to work long term. So, I chose an option my doctor did not offer me initially. I asked to have the stent put in and chose a ‘wait and see’ approach. Long term, my body needs to heal and I didn’t want to rule out the fact that the hole in my esophagus could repair itself given enough time. I didn’t come into this world with a metal plug in my throat and I’d like to avoid having one if possible. (Annie here–he means esophagus, but thinks of the whole region as his throat. As a certified SLP, I protest! Anyway, back to Matt.)

Regarding my esophagus, I am in an arena where there seems to be a blend of art and science. Esophageal stents seem to be primarily installed in people with advanced esophageal cancer who are near the end of their days. This is not me. In my case, the placement of a previous stent (frankly, the last 3 I’ve had in me) went unmonitored for so long that the rubbing and inflammation between my esophagus and trachea caused the hole. The medical term for this is a fistula. In other words, my fistula is not the direct cause of a malignant tumor so there is some flexibility from my doctors and willingness to consider creative solutions.

So, although January was devastating for me, at least I had a plan in place and a way to get food and medicine through my feeding tube. The Seattle GI doctor thought a ‘wait and see’ approach was reasonable with the stent in place.

In June of this year I scheduled a swallow test (esophagram) to check if my esophagus still had a hole in it. This swallow test was the same that I had done in January, which they cut short because the contrast fluid was obviously leaking into my lungs immediately after swallowing. The June swallow test was a big milestone and if I passed, that would mean I could move forward and possibly have the stent removed. I went to the clinic with very low expectations, but ended up passing!

Around this time I had also been moved to keep doing some research about my unique circumstances. Knowing there was flexibility with my doctors, I wanted to see if there were any alternative approaches for healing holes in an esophagus. I came across this article in a medical journal from 2018 (link) and sent it to my GI doctor. Amazingly he responded to my message the same day, read the article I sent him, and agreed it sounded like an interesting solution! To summarize the article, a woman with a fistula larger than mine, but in basically the same location, had a ’tissue graft’ applied to her fistula and held in place with a stent. Some details of her case do not match mine, but the key point is her fistula healed completely in 10 days and remained healed after a follow up bronchoscopy 10 months later!

And the interesting thing is the tissue is not harvested from the patient, it comes from the bladder of a pig. This wound healing method began with research done in the 1950s and has been well supported in many surgical applications. While no one comes into this world with pig bladder cells in them either, it seems like a promising approach.

When I met with my Seattle GI doctor we discussed all this. The positive swallow test result, the article I sent him, and how he would decide if he needed to apply the tissue graft. He noted that the best way to rule out any remaining holes in an esophagus is to do an endoscopy and test for any leaks during the procedure. So the plan was either Option 1: to take the stent out and test for the presence of a hole (fistula) and the stent would stay out, or, Option 2: he would apply the ’tissue graft’ and reinstall a new stent to hold it in place and then wait a couple more months to test for holes again.

This week I had my endoscopy in Seattle. It is a strange feeling going under anesthesia not really knowing what will happen until you wake up.

While the hole has already improved over the past ~7 months on its own, and I did pass the swallow test in June, there was still a small hole. So the doctor went with Option 2. I now have some pig bladder tissue providing a scaffolding upon which my esophageal tissue will hopefully continue to fuse together and seal completely.

Pouring meal replacement liquids and juice through a tube in my stomach continues as it has the past couple years. I’d very much like to spend my time doing other things, like even drinking a glass of water through my own mouth. But, things are okay. I’m hopeful that the current arrangement will facilitate healing.

My summer highlight has been seeing an owl while on a hike near where I live. Forest bathing, reading, and practicing patience are my close companions. Hopefully, I’ll have more flexibility soon.

My favorite book titles so far this year have been: Company of One, So Good They Can’t Ignore You (Cal Newport is the best!), The Divine Conspiracy, The Unsettling of America (I’m finding more and more alignment between my values and small scale food production).

I’ve also dabbled a bit in reading fiction, still not a convert, but Great Expectations was fantastic. Lastly, good people of King County, please return your library books on time. I’ve had holds on a few titles for months!

Happy 2025! Praise the Lord that my feeding tube is out and my esophageal stent is out. However, I’ve hit a snag.

Last summer the decision was made to yank (literally) the feeding tube out of my stomach in a five minute office procedure. The hole left by the tube closed up on its own within 24 hours. The body is truly amazing. At the time I still had the stent in my esophagus, but swallowing was going okay.

The second half of 2024 brought me intermittent bouts of coughing and stable swallowing conditions. My intuition told me the stent needed to come out, but there were no clear indicators when that would be appropriate and my doctors never directly answered that question when asked.

Unfortunately on New Year’s Eve, I went to the hospital with symptoms of respiratory infection. I had pneumonia and a 3cm lung abscess and spent the first 10 days of 2025 stuck in the hospital. To add insult to injury, the Oregon Ducks simply forgot how to play college football in the Rose Bowl. What the heck!?

While being treated for pneumonia by one team of doctors, residents and nurses, my gastroenterologist (GI) doctor was concerned something might be wrong with my stent. After conversing with him I asked if we could just take it out and see how I do for 30 days before putting a new one in. This was in line with his thinking so that’s what he did and I cried tears of joy upon waking from anesthesia.

Though happy to have the foreign object removed, swallowing still wasn’t going well. A speech pathologist administered a swallow test that revealed I’d developed a hole in my esophagus that allowed small amounts of anything I swallow to slide into the pleura around my lungs. Basically, the movement of the stent any time I coughed or swallowed in 2024, caused the clip holding the esophageal stent in place to tear a hole in the wall of my esophagus, thus causing my moderate case of pneumonia! This had been going on for weeks, maybe months.

Fortunately my GI doctor was responsive to these developments and was now feeling somewhat sheepish. He didn’t notice the hole when pulling the stent out. And no one picked up on it from the internal imaging. An effort was made to repair the hole while I was at the hospital, but my symptoms returned a few days later while recovering at home. I have been on the same liquid diet I was on while I had my feeding tube. Only this time I am swallowing by mouth. If I lean my body to the side that doesn’t have an esophageal hole, the liquid meal replacement formula goes down okay with minimal coughs and infiltration into my lungs.

I am now scheduled for an esophageal repair procedure with specialists in Seattle. I feel I am so close to the finish line. I am showing great restraint by not thumbing through all my recipe books in anticipation of returning to a solid food diet. But I dearly want this to be fixed. Acute care is a different animal than my long term focus on healing cancer. I’m thankful for stents, and tubes, and antibiotics, and procedures, but they are not without their challenges.

I’ve left out a lot of details in this one, but if you’ve made it this far, please pray. Pray for closure of my esophageal lining. For continued healing of the complicated nerves, muscles and tissues that make for a successful swallow. For a return to solid food that brings me so much joy and nourishment. For the antibiotics to continue to eradicate the pneumonia completely.

One funny: One nurse thought she would save time by doing her charting for a different patient while making a phone call for me while in my room. The person on the other line said, “Hi may I have the patient’s name and date of birth?”. My nurse read off the name and birthday of who she was charting for instead of me and I only noticed when I heard her say the year of the birthday as 1945! I was born in 1982.

I looked up and said “Really. 1945!? Do I look like I was born in 1945?”. I’m realizing that I run a little hot-blooded and the every-six-hour-IV antibiotic bag-change while in the hospital was getting to me. However, this snapped her out of it. We got it sorted, the nurse helped me order what I needed and we shared a laugh after the call.

Matt: I can swallow. My cough is greatly reduced. Tumors are stable. Praise the Lord!

I’ve had a few unexpected procedures and tests involving my esophagus over the past few months. Last year, I needed a stent installed as tumors in my chest had pushed part of my esophagus nearly shut. However, from what I can tell, my esophageal stent likely slipped out of place last summer resulting in a near constant cough and interrupted my ability to swallow anything more than my own saliva. Unfortunately, my oncologist, whose job it is to review scans, did not notice my stent being out of place at any point in the past ~9 months. It wasn’t until I reached out to my gastroenterologist in desperation in March 2024 that things started happening.

During my conversation with my gastroenterologist, he looked at a recent CT scan image and instantly identified that the stent was out of place and scheduled me to have a replacement stent installed and clipped in place just a few days later. Later that month I had my appointment with the speech pathologists and laryngologist in a clinic at the University of Washington. They recommended injecting my weaker vocal cord with a bulking agent to improve the closure which would make swallowing safer.

While I was awake and sitting upright, the doctor jabbed through my throat into my vocal cords! (‘We can do all things through Christ who gives us strength.’). Annie has enjoyed not only my improvements, but also having a front row seat to some of the more interesting and technical clinical applications of her craft. After my throat jab, she explained where and how they performed the injection. In my sore, gravely voice, I simply responded…’I am Batman’.

A week after this procedure, they did another video scope assessment to watch me swallow some liquids and soft texture foods. All looked surprisingly good and they recommended that I start building swallowing strength by only eating pureed texture foods and slowly build up my quantity of intake as I feel comfortable. Also, since the injection, my voice is now more consistent and audible.

I’m now eating all food orally again and only use my feeding tube for dissolved pills. I will gradually test my ability to swallow pills. Once that feels comfortable for a period of time, the gastroenterologist and I could discuss removing my stomach tube. I may only be weeks away from being freed from this necessary, but very disruptive medical device!

Honestly, I’m overjoyed. I’ve never felt so helpless as I did when I couldn’t swallow food. The feeding formula is fine, but it obviously lacks the live plant based nutrition that was so important to me when I experienced such significant healing in 2020.

In my recent meetings with doctors, a couple times I’ve been asked, ‘so who is coordinating your care and all your specialists?’. I typically point at myself and respond, ‘THIS GUY!’. I appreciate that doctors need to specialize in order to reach advanced expertise. But thinking holistically and critical reasoning has remained my own responsibility and probably caused me more than a little paranoia.

Lastly, my recent scans of my brain and chest show stable conditions. There remains evidence of pneumonia and scarring in my lungs, but I am confident that this will decrease in the coming months. I had hoped for more improvement in my chest, but given that my cough is significantly reduced and I’ve only recently restarted eating real food again, I can be patient.

Annie continues to make a positive impact in the schools she is placed at and advocates for improvements in many ways; all of which ultimately improve the experiences for the PreK-5th graders she serves. She regularly gets kind remarks from parents, teachers, principals and her peers for the creative and thoughtful ways she handles difficult situations. This time of year teachers typically need to communicate their intentions about working the following year so districts can hire accordingly. But Annie was informed from the district administration that she was already approved to work in the district next year; which I interpret as them saying ‘yeah, we want you to stay!’.

Still loving: hiking and meditation locales so close to our home. Also, some fun horse-play with Faith.

Matt: Praise the Lord! Its 2024 and overall, things are good, stable, and slowly improving. My scans in the Fall revealed significant inflammation in my chest related to infection from aspiration pneumonia earlier in the year. My doctor raised the possibility of changing me to a new targeted therapy, but wanted to wait and monitor my progress before making a decision. My scans from this month showed things continue to remain stable with some areas of improvement. There remain several small tumors in my chest and brain, but I am not experiencing any symptoms other than a chronic cough.

These are scary sentences to write, but stable is good. Stable precedes shrinking. Stable can indicate that healing is happening and to persevere. Some survivors take several years to fully heal. I’ve regained 40 pounds over the past 9 months and my vitals and blood markers are great. So I am staying positive and hopeful. I’ll continue to be monitored and expect things to continue shrinking away in time.

For the time being, I remain on my original medication. There isn’t a need to change medicines as long as I am benefitting from what I am on. I am also in a good rhythm of juicing carrots, beets, salad or micro greens, apples, lemon, turmeric, ginger, red onion, blueberries, and celery daily. I also add minced raw garlic, apricot kernel powder, green tea, vitamin D, black seed oil, and curcumin. Yes, my kitchen smells very strange at 7am each morning.

I remain unable to swallow. A visit to my SLP in January confirmed liquids slip down my airway when I attempt to swallow. In March, I have an appointment with the swallowing specialists at a clinic in Seattle. I made this appointment in November(!). I’m hoping their long backlog reflects their expertise and that they can recommend a solution. I haven’t experienced the pleasure of a meal eaten through my mouth since June 2023.

I feel comfortable driving short distances now and am glad to contribute to the weekly errands. I’ve done some short hikes in the area and changes in scenery are very refreshing.

An ongoing challenge is feeling isolated and not knowing how to spend all my excess free time. But as I reflected on this, I came across this helpful teaching on the principle of solitude. Solitude is something one can choose. Many who choose solitude do so for important reasons. I am learning how to meditate and pray in new ways. However, solitude feels against my nature. There’s many other things I’d rather be doing, but I am grateful that I have enough for right now.

Prayer requests:

• Better communication with my oncologist or wisdom to find a new doctor.
• Continued healing overall, especially the ability to swallow.
• Wisdom and clarity during my appointment with the swallowing specialists and insight into any potential complications from my esophageal stent.

Left: Snoqualmie Falls

Top right: Faith’s new boarding facility!

Bottom right: Lake Wilderness

Matt: Brief updates and prayer requests. My last scans at the end of August showed many areas of improvement in the chest, but also some new spots in the lungs. Visual interpretation of lung spots isn’t always a conclusive way to determine whether a spot is a malignant growth, or benign inflammation, scar tissue, or left over infection. Given my pneumonia infection in the summer, the decision was made to continue monitoring the situation with another round of scans in November.

Separately, our insurance changed over in early September with Annie’s new job. This also meant a new pharmacy to distribute my specialty targeted treatment. What should have been a simple phone call to transfer my prescription to the new pharmacy led to multiple phone calls, messages, general confusion, and a lack of connection between the specialty pharmacy and my doctor’s office.

I’ve advocated for myself beyond what should be expected of any patient; battling poor communication, no communication, and getting hung up on by the pharmacy when I’ve called their support line. Unfortunately, I was off my targeted treatment two and a half weeks before the pharmacy refilled the prescription.

Prayer requests:

Please pray that refilling the targeted treatment prescription will be simple and smooth going forward. I’ve advocated with my doctor to postpone the scans so I can stabilize back on my medicine. Please pray for a straight path through the nonsense and wisdom for my doctor.

Annie should know sometime tomorrow whether she needs to move her horse with immediacy (by Halloween) or if there will be more time to consider the best options for boarding. Please pray for clarity and a good landing spot if a move is imminent. This also adds stress to Annie’s already very full plate–please pray that the peace of Christ would reign in this time.

Matt: Just a quick update to share. Annie has decided to take an SLP job in a local school district. This will help our financial situation, but Annie being out of the home for long stretches will challenge us to keep trusting God in the details.

I am in the process of transitioning to the new anti-seizure med (and weaning off the former). I look forward to only being on one anti-convulsant medication. Currently I feel fairly out-of-body (ie. drunk) most of the day though I expect this will decrease after I stabilize on the right dose of the new medication.

I’ve managed to switch to a plant-based formula for my feedings. I also continue to trust that nerves involved in swallowing need a few more months to heal. Fortunately I don’t have food cravings. I consider this a blessing. However, it is a lesson in long-suffering.

Annie’s younger brother, and two of his kids came all the way from Rhode Island out to visit family on the West Coast. Annie’s dad drove them up from Portland and they all stayed with us for a couple days. We had a great time going on neighborhood walks and showing them our town’s friendly rooftop dragon ‘Erasmus’.

Praises:

The $15k error from the insurance company got resolved with minimal headache.

My voice continues to improve in strength and resonance.

Many people have sent us texts, cards and notes of encouragement. Each one is special and we’re very grateful to have the support of so many.

Prayer requests:

For good to abound to Annie while she is working full-time in the district, maintaining her private practice and finding a new home for her horse (the barn went on the market today)

For healing overall, resolution of coughing since getting pneumonia a couple months ago, my ability to swallow, and that strong improvement will be evident in my chest CT scan tomorrow 8/24

For logistics around getting to appointments as I’m not allowed to drive until November

Matt: I’m back! 

I’ve spent a lot of time thinking about the return of cancer and possible reasons why it took a seizure to bring me to the doctor’s office. 

I’ve made some decisions that I regret. Cancer patients want to hear that there is ‘no evidence of disease’. When my doctors said there was ‘there was no active cancer’ in early 2021 and we moved later in the year, I stopped taking the medicine, and relaxed some of my diet protocols. I really didn’t include Annie in this decision and that created a lot of distance between us. Reflecting on the past couple of years, I’ve started a new job, moved to a new state with no community around us, and Annie started her business. Each a high stress event in its own right. When I was laid off in January of this year, my body sent me signals that I continued to ignore until my brain stopped functioning as it should, leading to a seizure.

Clearly there’s disappointment about where I’m at right now. It feels like I’ve missed most of 2023. It’s humbling, lonely, and strange to just sit quietly and heal. For someone who still defines a lot of self worth and identity from what I accomplish, this year has been very disorienting. But, I am now able to do more around the house and my perception of self worth is changing.

The oncologist returned me to the same targeted therapy I was on in 2020. I am also going back to a more focused diet and lifestyle adjustments I’ve done in the past. Bring on the garlic!

The big lesson for me is the importance of getting help when things aren’t quite right healthwise and before I need it. The brain tumors were responsible for the nausea, balance issues, and seizure earlier this year. For cases like mine, doctors typically prescribe steroids to reduce inflammation. However, the high level of steroids also caused terrible hallucinations and difficulty telling dreams from reality. I am honestly thankful Annie is still by my side. Even now we play the game ‘Real or not real’ with memories I have from the month of May.

Meals are a lot less fun currently. For now, I pour meals, supplements and medicine directly into my stomach with my feeding tube. I affectionately call it ‘Tubie’. I get a normal amount of calories for each meal 3-4 times a day through this guy, but I don’t taste anything. For a foodie/home chef like me, this is fairly tormenting. Additionally, the formula does not provide great calories and there is some cow-milk in the formula. I supplement the formula with a juice or smoothie of my own concoction and it has greatly improved my microbiome. My weight is slowly increasing. Not sure how long I’ll need the tube, but I’m thankful for it as I still can’t swallow anything other than saliva.  

I am greatly encouraged by such ‘marked improvement’ in recent scans. A brain MRI in mid-July showed significant improvement of tumors in the brain and a chest CT scan will happen sometime in late August. I no longer take the steroids (Praise the Lord!). I’ll continue with the anti-seizure meds a while more, but I am not epileptic so they will not likely be lifelong. There is a different anti-seizure medication I can switch to with no risk of heart rhythm impact. Also, my clinical evaluation with the neurologist was normal. Correctly counting all his fingers during the peripheral vision component of the test was a particular win for me!

Currently loving Landscape artist of the year on Amazon Prime Video. A key theme is not doing too much. 

“Life is like a landscape; you live in the midst of it but can describe it only from the vantage point of distance” [Charles Lindbergh]

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Prayer requests:

• For healing, especially for my swallow
• For discernment how/when to navigate returning to work, and next steps for Annie applying to jobs
• To be better at hearing from God in all things and waiting on Him
• Changing anti-seizure medicines and no drug interactions or negative side effects
• For a timely correction to an insurance adjustment that currently says we owe $15,000 (caused by an insurance oversight)

Annie: June 28th we had our first visit to the oncology clinic. Matt’s doctor said that clinically he is doing well and so she said he could stop taking the (nasty) steroid. His blood labs were pretty good too. Matt had been concerned that his hemoglobin levels would be down and so preemptively had been taking wheatgrass juice (through the PEG tube) to help and it seems to have done the trick! Hemoglobin numbers are heading back up near normal range. The oncologist scheduled Matt for 4 weeks later and wanted him to have a brain MRI done prior to meeting back with her on July 24th.

On June 29th Matt had the swallowing evaluation done. Two SLPs (and me as the third in the room!) performed the evaluation having Matt try small spoonfuls of water, some applesauce and crushed pear all dyed blue. They had him try some different chin positions while swallowing too. While it didn’t appear that there was any major difficulty with the swallow itself (a little weakness perhaps), upon having Matt clear his throat or voluntarily cough, blue residue was visibly coming from his airway. They stopped the evaluation and recommended that he continue using the PEG tube. One of the SLPs would thoroughly review, frame-by-frame, the video that was taken to see when and where the liquid and food was slipping by.

We got a phone call from the SLP later that afternoon saying that she had to really slow the video down to see that just before the swallow started, a little bit of liquid/food spills into the airway (where Matt’s paralyzed vocal cord is) and his body is not sensing it at the level of the vocal cords, but only further down in the airway. So Matt remains reliant on the PEG tube for all eating, drinking and medications. We scheduled an in-office follow-up to learn some swallowing exercises.

On July 1st we had an outing to nearby Clark Lake and Matt did the most challenging hiking he’s done in a long time. Such a beautiful place.

We had a tame Independence Day, watching the musical Hamilton and turning on all the fans/sound machines to drown out the fireworks from neighbors–to keep our senior dog from barking all night.

Our 17th wedding anniversary was on the 8th and we revisited the Bellevue Botanical Garden, now splendidly in full bloom.

Yesterday (10th) we had the follow-up with the SLP and Matt learned several exercises to strengthen the back of the tongue and throat, and also some swallowing-based exercises. The SLP is the most concerned about the loss of sensation that Matt experiences, not feeling it (i.e. coughing immediately) when something gets to his vocal cords. She recommended that Matt get on the waiting list to see the laryngologist at UW. Matt still has some residual coughing from having had aspiration pneumonia, but once that is resolved, the SLP thought that Matt could try moistening his mouth with an ice chip and see if that triggers any coughing with a swallow–to see if any sensation is returning.

This news is frustrating and disheartening, however, we are grateful that the PEG tube is still in place and that Matt is now independent with feeding himself that way–and he’s getting more efficient with it too. He has also mostly taken back communicating with healthcare and service providers.

On Friday morning (14th) Matt will have his first appointment with a neurologist–we have a lot of questions about the anti-seizure medication/side effects, risk of future seizure activity and brain/nervous system function. Too bad Matt’s MRI is scheduled for later that afternoon–it would be nice to go into the neurology appointment with that fresh scan.

Please pray for: Matt’s coughing to swiftly conclude and sensation/motor function be restored to his vocal cord, our appointment with the neurologist (would like for Matt to not need medication/or a reduction of medication/different medication–fewer side effects), Matt to be at peace during the MRI (and not cough)/encouraging results, Annie’s diligence in attending to her own physical/mental/emotional health, Annie’s seeking the WA state school-SLP license (this could open up financial/benefits options if needed), upcoming change to insurance August 1st (going from company paid COBRA to self-paid insurance).

Annie: It has been a busy week! On 6/18 (Father’s Day) the doctor came to Matt’s room before 9am and said, “Let’s get you outta here!” Matt cheered, “YES!” with his arms flying up in celebration. The doctor then asked, “How has your eating been going?” and our reply was suddenly sullen…”he hasn’t been eating by mouth.” The doctor was surprised to hear that no SLP had come, so he assured us that he’d put Matt on the ASAP list for a bedside swallow evaluation.

We ended up waiting in the room till nearly 3pm, not daring to leave and perhaps miss the SLP. When the SLP came, I was impressed with her treatment of Matt as well as her ability to explain what she was doing. We told her Matt’s history of sudden difficulty with swallowing and my suggestions for how he could try to swallow more safely. She started with Matt having just an ice chip and he produced more wet sounding coughing. She stopped the evaluation right there and said that doing a instrumental evaluation would be more helpful for figuring out where the swallow is “going wrong” and to see if there are techniques or food textures that would make swallowing safely more probable. She recommended that Matt have a FEES (fiberoptic endoscopic evaluation of swallowing)–the same through the nose camera that he’d had in December 2019 (and in July 2022–which we hadn’t previously shared with y’all) rather than a modified barium swallow study because she didn’t want barium accidentally getting into his lungs given his compromised condition (aspiration pneumonia).

We questioned how Matt’s swallowing could have declined so suddenly and she mentioned that it’s possible that the accidental middle of the night and not quite awake yet aspiration of the water could impair the function of Matt’s lungs and set up a chain reaction of the timings being slightly off for breathing with swallowing…we are praying that that is what happened.

Knowing that we had the formula supply and knowledge for how to continue doing PEG tube feedings, we opted for getting discharged and setting up the outpatient evaluation for later. I stopped by the pharmacy in the hospital to pick up the 5-day course of antibiotics and asked the pharmacist about how to correctly prepare the tablets (and Matt’s other medications) for being put through the PEG tube. He got me a tablet crusher device and gave me some tips on it as well. When I remarked, “it’s only 5-days, I can do this!” he smiled in surprise at my positivity and said that he rarely hears things like that from his patients.

It was a relief to get back home and a tangible reminder of God’s providence that Matt hadn’t yet had the PEG tube removed and that I hadn’t yet found a place to donate the extra supply of formula. It was also a bit discouraging that Matt’s increasing independence had been rolled back–he still relied on me for all driving, setting up appointments and communicating with providers, and he now needed me for all meals, meds and hydration too.

On Monday, 6/19 Matt said he was feeling a little depressed and asked to go with me on my errands. Quick trips into PetSmart and Target were on my list, so for the first time since December 2022 or perhaps early January 2023 Matt went into stores. We enjoyed being out and being together.

Throughout the week I diligently took Matt’s vitals in the morning and evening. All good. We’d get especially excited when his oxygen saturation (often a 97) hit 99! Matt was given a spirometer by his night nurse on 6/17 for him to work on improving his lung volume–he inhales against a little bit of resistance and tries to keep the blue bead floating between the arrows. He kept up with using the spirometer and worked to make gains. He’d frequently comment on what his level was in terms of the height and age of a woman (e.g., ‘I have the same breathing as a very short 60 year old woman’)–he didn’t yet have the lung volume on the men’s scale. He began to have more “productive” coughing (some yellow, greenish phlegm) in the early half of the week which told us that doing the antibiotics had been the right call as well.

On Wednesday 6/21 we went back to the hospital, this time for a planned EKG. It was a very quick test–it took longer to set up the electrodes than the 10 seconds it took to capture Matt’s heart rhythms. The tech said that it looked like a nice normal rhythm, but that the cardiologist would review it and send the results onto Matt’s oncologist. The reason we had the test done is that the anti-seizure medicine Matt is currently taking has a potential interaction effect with the targeted anti-cancer medicine he’s on which could cause heart issues (too slow a heart beat necessitating a pacemaker). We will eventually get an appointment with neurology to see if there is a different medication that would have less of a potential effect as well as to discuss the timing of decreasing and or ceasing the anti-seizure medication.

Thursday morning we had a 5-minute follow-up telehealth visit with the doctor that saw us in her clinic the week prior–she was glad that Matt was doing so much better. After that Matt made a list of 4 things he wanted to accomplish that day and on it was a haircut. He hadn’t had one since early February, so I grabbed this picture when the sides had been done, but before touching the top. He got the other 3 things done too.

On Friday evening we got to do our new Sabbath tradition of lighting a candle to remind of Christ’s presence (cute ceramic holder from IKEA), reading a Psalm aloud (Psalm 92 this week) and a short prayer too. We missed out on the candle bit last week with Matt being on oxygen and all.

On Saturday Matt had an eye doctor appointment and after all that busy-ness in the week we decided to go to one of our favorite nearby nature spots for some rest: Lake Wilderness in Maple Valley. We shared positive appreciation memories with each other, the initial step of the emotional healing modality Immanuel Approach/Immanuel Prayer by Dr. Karl Lehman. We’ve learned about this approach initially from Annie’s dear friends back in Portland and further through the book The Other Half of Church (Dr. Jim Wilder) and through the Face to Face Ministries podcast.

Through all the twists and turns of this week, we have enjoyed greater honesty and vulnerability with each other which has just made us love each other that little bit extra.

We’d like to get back into church community as soon as we can and have appreciated being able to at least watch a livestream of the service at Maple Valley Church. Today’s was especially heart grabbing for Matt as a guest pastor shared his health journey which Matt felt paralleled his pretty closely–and it also gave us both encouragement to let Christ shine brightly through us even though this season can feel bleak at times.

Just a few minutes ago, Matt hit his height and age target on the men’s scale of the spirometer for the first time!

Please pray for: Matt’s continued improvement in his lung volume/breathing, improvement in Matt’s voice loudness and stamina, Matt’s swallowing ability to be restored (FEES evaluation on 6/29), peace, clarity and the sense that Matt is listened to in our first in-office oncologist appointment (6/28)–and for normal healthy blood panel results. We’re really working at “being in the present moment” and waiting on God’s guidance, but we are humans with the capacity to plan (and get anxious), so we also ask for your prayers in our ability to listen to the Lord and discern wisely and for people to come around us who can speak God’s wisdom into our circumstances–at this point top of the list is future work.

We thank you again for journeying with us. I know some of you check here regularly for updates, so I wanted to let you know that if you “subscribe” to this blog, you’ll automatically get an alert emailed to you when updates have been posted. To do so, scroll to end of the Annie & Matt -Journey (Mile Posts) page and enter in your email address to the Follow My Blog area and click subscribe. We are grateful to know that at least 60 of you (plus your households) are thinking of us with love and care when we post updates.

Annie: I’ve had it in my planner to do an update for a couple of weeks now…here we go. On June 7th Matt got to reduce the steroid more from the week prior and also had a virtual appointment with his oncologist. She was very pleased at the amount that the tumors in the brain had shrunk and assumed that that was also taking place in the rest of the body. We asked about whether or not Matt still needed to have the PEG (feeding) tube since he hasn’t used it for anything since May 21st. She said that it’s a soft call, but maybe too early to decide since he hasn’t had any chest CT scans since early May…so it could come out if it is really bothersome and if it fell out (yikes!) there wouldn’t be any real need to get it back in…she’d prefer to wait until Matt gets his yet to be scheduled next chest CT scan.

Later that same day Matt met his new primary care doctor. She’s a native Portlander too! Not knowing the hospital/clinic campus very well I took us to the wrong building initially so Matt had to do quite a bit of walking with the walker which he tolerated well enough.

The next day (6/8) Matt’s mom came back into town and we went up to the Bellevue Botanical Garden–we highly recommend it. He left his walker in the car and opted to hold onto my arm for reassurance. We walked slowly and took sit breaks. It was a lovely time to do something normal.

I told Matt that an outing like this would probably get us “kicked out of” eligibility for home health and what do you know the next day (6/9) Matt graduated from home health physical therapy. He got some more advanced balance exercises to practice and was told that he probably didn’t need the walker anymore either. So, he stopped using it. Matt’s brother sent him the wooden cane he’d used while recovering from surgery on his broken foot. Matt used the cane for stability while doing solo laps around our yard.

Wednesday the 14th the steroid got further reduced (yay). We’d noticed that he’d started to get a bit of swelling to his face and neck “moon face” which is pretty typical of being on steroids. Over the next few days the “moon face” subsided. On Thursday (15th) Matt got discharged from home health services by the nurse. A funny aside is that her blood pressure cuff and temporal thermometer never seemed to work anytime she’d come, so I always brought out my cuff and thermometer…I wonder what she did at other people’s homes. Her pulse oximeter and stethoscope worked just fine (shrug).

In the middle of the night (Friday early morning, the 16th), Matt had a little tickle cough that woke him up. He sat up and took a swig of water and started coughing immediately and violently (causing a little bit of a bloody nose too). He tried another sip and had the same experience–clearly the water had gone down the wrong pipe! He kept coughing for at least the next hour–wet, gurgley, foamy, phlegmy coughing. We both googled quite a bit about what could be happening and my legs started to shake with adrenaline and I got lightheaded. The coughing finally subsided sometime in the 3am hour and Matt was able to fall back asleep after I set up a wedge pillow for him to raise his torso up. I didn’t really fall back asleep.

Always an early riser, Matt got up before me and had a few more wet productive coughs. He got some more water to drink and had more coughing. He took his temperature too. I woke up to a ding from a group text sent to me and the home health nurse by Matt. He told her that he couldn’t swallow without coughing and that he had a temperature of 100…”should I go to the ER?”. Her reply was, “Yes.”

I jumped out of bed and asked Matt for all the details on what he was experiencing. I retook his temperature and it was 99.6 and again and again until it was in the 98.7 range. I ended up calling his primary care doctor to see if we could get in there since it didn’t seem as dire. The coughing didn’t happen immediately with a swallow but was delayed by 5 to 45 seconds. We were able to get an appointment for the morning with another doctor in the group for 10:40am.

At the doctor’s office Matt’s oxygen saturation level was 91–which is on the low side, but everything else was fine. Lungs sounded clear too. I asked if the doctor could recheck his oxygen level and she did. At first the machine read 88 and I asked if the machine could be malfunctioning. The doctor checked herself and it also read 88–yep malfunctioning. She got another machine and pretested it on herself and a nurse before bringing it to Matt. He got a 92. Still low. The doctor ordered a chest x-ray be done. She thought it would be too early to see if there was pneumonia from aspiration (getting liquid/food etc. into the lungs), but it would be good to check. She also thought that getting a modified barium swallow study might be needed at some point. She sent us off with instructions to go to the ER if Matt’s oxygen level goes below 92 consistently or if he spikes a fever of 100.4 or higher or if he has worsening shortness of breath. She let us know we could get a pulse oximeter at any pharmacy for home use.

We went to the car and called to get the x ray appointment set up for 1:20 pm. On the way home Matt suggested we stop at the pharmacy near our home to get a pulse oximeter. At home, he kept getting readings in the high 80’s, but even down as low as 85. I checked myself too and got 97. The doctor called us with the results of the x-ray saying that because there are many “hypodensities” (tumors), it’s too hard to tell if anything else is going on. She had also called Matt’s oncologist and they both agreed that because Matt is at a higher risk for potential infection/complications that he would be put on a 5 day course of two antibiotics as a precaution. I asked her how accurate home use pulse oximeters are since Matt was getting readings in the 80’s and she advised…go to the ER. I got off the phone, took Matt’s temperature…100.4. Off to the ER we went.

It wasn’t busy (thankfully) so Matt was triaged quickly and given nasal oxygen right in the waiting room. I had brought the oximeter with me and Matt was now reading at 97! Oh wow. He had blood drawn and they wanted to “culture” it to check for bacteria in the blood stream (his temp was now 99.4). His white blood cell count came back slightly elevated so they did start him on IV antibiotics and classified him as “septic”. He failed the nurse’s bedside swallowing test (more wet coughing after taking several sips of water in succession) so she said he shouldn’t eat or drink until an SLP had done an evaluation.

Side note, yes, I’m an SLP. Yes I learned about swallowing (and disordered swallowing) in depth and even did a clinical placement in an acute care setting where I participated regularly in bedside swallowing evaluation and modified barium swallow studies. But that was 16 years ago…I’m knowledgable, but it’s not my area of competence anymore–gosh it would be really handy right now.

Matt was admitted to the hospital and I was able to help with the transition to his new room even though it was past visiting hours. He was still given his normal medication to swallow with water and continued to have some coughing after swallowing. He wore nasal oxygen continually (2 liters of oxygen per minute) and the plan was to wean him off of it as his oxygen saturation levels improved. I eventually went home alone and as I unpacked my backpack and repacked an overnight bag for Matt I had a big, snotty, and cleansing cry.

I woke up (well, I didn’t really sleep all that great) to another text alert. Matt’s oxygen saturation was in the normal range and his temperature was normal too (praise the LORD). I brought the tube feeding supplies to the hospital (from the back of the cupboard…unused for nearly a month) knowing that Matt was not supposed to eat by mouth. Eventually the doctor came by and said Matt’s white blood count was normal and he was no longer in “sepsis” and just being treated for hypoxia (low oxygen) and being given antibiotics for “potential” aspiration pneumonia. He said that the SLP would come by to do the bedside swallow eval…but the nurse had already said that she didn’t see that an SLP was on for the weekend.

Aargh…how do I get my skills up to snuff really quick?!!

So, we have now returned back to tube feeding to reduce the risk of getting food and drink into Matt’s airway, bummer. He’s still taking his meds by mouth with sips of water (water is the least likely liquid to cause bacterial growth–well maybe vodka, but we’re dry these days). I suggested a few strategies for swallowing and doing a chin tuck swallow with a short cough and immediate second swallow seem to help remedy water going the wrong way. Over the morning Matt’s oxygen level continued to improve so that he was able to go down to 1 liter per minute. He faithfully did his PT exercises and we saw his oxygen level rise even more, like even to 100%. We had been cautioned that moving around (like to go to the bathroom) would make his level dip down, but nope, we saw the opposite. When he was relaxed and snoozing (and snoring) his level would hover at 96–still just fine.

Around 2:30 the oxygen was turned off and Matt got to remove the nasal oxygen–well I had to free him from it since I MacGyver’d it to stick to his face–original product design failed to keep it in place. His oxygen saturation maintained at 97 or higher so he was also able to have the finger sensor removed. He was basically a free man aside from having to be stuck to an IV pole during antibiotic delivery.

I was able to leave the hospital for a few hours to run errands (i.e., give Faith a couple carrots) and give Matt’s mom and my dad a call. I’d been updating them through text all along and they had been so responsive with loving encouragement and prayerful support, but it was so good to hear their voices too. Returning to the hospital I took Matt on a little walk to the hospital lobby where they have a modern waterfall fountain.

He’ll be here overnight, but you can pray for: a swallowing evaluation to be done as soon as possible, getting good information from the SLP about how to safely eat/drink, no future problems with swallowing and a quick discharge from the hospital. Also pray for our patient endurance, encouragement and God’s supply to all our needs.