Firmly on the road to recovery

Friends, thanks for being with me.  It’s been a long 9 months!  This may be my final post, as I’m firmly on the road to recovery.

Cancer-free!

Scans continue to be clear, showing no cancer.  Yay!  But not shocking, since my pre-radiation scans also showed no cancer: if it was there post-surgery, it was undetectable.

Rehab & healing continue

Rehab and appointments occupy much of my time. 4+ hours/day home exercise if I do all the things. I sometimes try to “double up” and do two things simultaneously, but still, sheesh.

That said, my remaining physical symptoms – salivary and tongue function, speech and taste changes, lymphedema swelling, jaw/neck tightness – are all ones I can live with.  Even if these didn’t improve beyond their current state, they won’t get in the way of me living a full life.  (Though you might hear me kvetch just a little bit, cuz if lettuce is bitter forever I’m sure gonna miss salads.  And I hope vanilla ice cream doesn’t always taste disappointing.  But if so, so be it, as these are genuinely small things.)

Also, my executive function has room for improvement.  I make mistakes with scheduling, for example, which I really hope improves.  In the meantime, thanks to y’all for being gracious with my screw ups, and I try to have patience with myself as well.

So things continue to heal.  My body and mind have more repair to do, and I trust I will get there.  All in due time. 

Future & follow-up

The doctors plan to follow me very closely for the rest of my life. I’ll see an oncologist and/or surgeon every 3-6 months. They have a whole protocol for future scans. This is all similar to what followed my 2010 oral cancer saga. They’ll presumably watch me even closer now that I’m a two-timer.

Because of the radiation, I’ll see a dentist 3x/year.  And some symptoms, like those related to scar tissue (aka fibrosis), may show up many years down the line. 5? 10? 15? Never? They can’t say.  For this reason, some of my rehab will likely be recommended “forever.”

We don’t yet know if the “field dysplasia” (similar to field cancerization) on my tongue will develop again, as in the years preceding this cancer.  My guess is yes. If I have surgery for that again, as I did in 2018, that seems the most likely reason I’d reactivate this blog.

I currently anticipate getting back to work by early next year.  I don’t yet know what shape it will take (and don’t yet have energy to start figuring it out) but it will unfold in due time.

Thank you

I’ll say it again: THANK YOU!  I’m tremendously fortunate to have such community, with loving friends, family, and colleagues who care about me.

If you’ve sent a note or card or email, left a comment on the blog, cooked food, given a ride, sent healing vibes, visited…for all this, my gratitude overflows.

Our bodies are amazing.  When I reflect on all the parts that work right every day, I’m in awe.  May we all have moments of appreciation for the small miracles of daily life.

A summer plateau

Hi friends,

What a summer, eh?  My recovery is proceeding about as expected. Things have recently felt like they’ve plateaued a bit. This makes sense, as it’s been about 2 months since my final radiation treatment.  I continue to see small milestones as my tissues continue to heal.

Here are some highlights:

I am still eating mostly soft foods.  There are a few reasons: 1) my tongue isn’t yet great at the mechanics of moving bits around my mouth, and 2) scratchy bits can cause my throat or tongue tissues to hurt. I recently decided to hire a personal chef to prepare several healthy vegetable-filled meals each week, which has made a big difference in the variety I’m eating, and seems like a good temporary support.  (As some of you know, I’m low-FODMAP, so cooking for me is like an obstacle course even in the best of times.)

My taste and tongue function continue to improve, slowly.  I don’t yet know what my end point will be, and it’s unlikely I’ll recover all my taste sensation.  I’m probably most of the way to my end point with recovering taste, but some patients report continued improvement, especially during the first 6 months. My tongue function will continue to improve as I progress with various exercises in the coming months.

Lymphedema has developed under my chin. This means that lymph fluid isn’t draining fully.  I’m doing various things to address it: daily lymphatic self-massage, sleeping on wedge pillow that elevates my head, keeping the skin moisturized.  Next up: a compression bandage, which should be super fun.  (Search “chin compression” and you’ll get why I’m snarky.) 

2 hours (!) of jaw/tongue exercises a day.  It’s taking all my willpower to spend nearly an hour on this each morning and each evening.  My routine includes fun stuff like poking (er, “massaging”) my tongue with my finger, stretching jaw and neck muscles, holding my mouth wide open, and other joyful activities.  My screen time has definitely increased, as I use full-length movies to motivate: if I watch the first half in the morning, then I’m somewhat more motivated in the evening, to see how it ends.  But it’s still monotonous, so wish me luck!

Cardio back in the mix. Restarting cardio in mid-June felt like a milestone.  Recently, C and I have been doing exercise videos together, and doing them not-alone definitely helps me motivate.

So that’s the scoop.  Hope y’all are having a summer that includes moments of joy and relaxation.

I’ll end with gratitude.  Things I’m grateful for include:

• Healthy food (pics below!)
• Green onion tops, harvested from our garden
• The shade while sitting under a tree
• My spouse
• Science
• Games! 

Continuing the upward trend

I’m thrilled to share that I’m continuing to improve. Eating and talking get easier every day. Thanks for keeping me in your thoughts — it’s working!

Those who have seen me in person reflect that there’s a totally different energy coming from me now, compared to a few weeks ago. This is good!

Things really turned a corner the week of May 30, when my brother was in town. Must have been the nourishing home-grown eggs he brought.

I’m still eating mostly mild, blenderized foods (plus scrambled eggs, which are weirdly easy to eat). I have added back yogurts (dairy and non). I suspect it won’t be long before I can tolerate a wider range of foods and temperatures. The increased variety will be welcome. This progression of foods soft-to-regular is by now familiar, after 3 prior tongue surgeries, and I’m so over it.

My daily routine includes a lot of time preparing and eating food (as a slow eater of several small meals), regular rehab/stretches/exercise, and too much follow-up with medical providers. Radiation on the oral cavity has a life-long impact on the health of my mouth and jaw, so I want to do everything I can now, while it’s early, to break up any scar tissue, and learn my rehab & PT options. I hope to avoid being surprised by new problems 5 or 10 years down the line.

I’m looking forward to eventually being off all the pain meds, and eating more things. (Salad! Sandwiches! Chips?) Also, looking forward to socializing — I’m starting to itch for more interaction, though my stamina is still low.

Unless something changes, my postings will probably be less frequent from here on out, with only occasional updates for the rest of summer.

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Enjoy these photos of my common spare time activities: gardening, puzzling + podcasts, re-reading light fiction. And napping (demonstrated by Tasha the cat).

Over the hump!

I definitely have turned a corner on healing from radiation. Hooray! It feels great. What a relief.

Here’s more about the situation. There were 4 main symptoms the radiation oncologist said would take place during radiation:

• Mouth sores – this is the most painful aspect of things, and the one that seems to be noticeably better. I can talk and eat with less pain. This is probably a combo of healing in process (hooray!) and a robust medication routine (so many meds!). It is expected to take several weeks before this is fully healed. I’m still using topical numbing solution before meals, but even so, everything just feels easier overall.
• Dry mouth – this peaked a little while ago, I think
• Loss of taste – this one might not have peaked. Taste is still gone. For example, I can’t currently taste the difference between vanilla and chocolate puddings. They feel different — chocolate feels sharper, stings a bit, maybe. Weird. It may take longer to figure this out.
• Sunburn on neck – definitely better.

So overall, I’m doing pretty well. Let the healing continue!

On Tuesday, I tried out some different foods to see what I could tolerate.
From left: rice pudding (blended), baby food, mashed potatoes, mashed avocado.

Cheap Vanilla Pudding for the Win

We’ve discovered over the past few days that generic, heavily-processed, preservative-filled, plastic-encased vanilla pudding is the ONE thing I can tolerate best.  When even water can sting, somehow the vanilla pudding doesn’t.

There’s been a comical amount of effort in recent days – with valiant attempts by C, friends & neighbors – to see if something more homemade, more organic, less processed (or, even, with ANY nutritional content at all), or not packaged in single-serving plastic might be a substitute, but my tongue has sent a clear message.  Cheap vanilla pudding is the winner.

Symptom plateau? 

I’m also happy to report that I feel like I’m reaching a plateau in symptoms.  Some things seem to be less hard today than the past few days.  It might just be I’m more effectively medicated (which I am), but I do suspect the increase in symptoms could actually be turning around.

My neck skin, where it was burned from the radiation, definitely looks better.

My radiation oncologist mentioned that tongue cells regenerate every 8 days, so presumably the cells showing up over the past day or two have not gotten zapped with radiation, and have a better chance of growing properly.  Hopefully all the T-cells are busy heading towards my mouth, cleaning up the mess, and creating space for fully healthy cells to flourish.  Is that how it works?

Naps

Naps are the best. They provide an extra chance for my body to rest, for cells to do their healing magic. Also, if I let myself nap whenever I feel a little tired, that means SO many plans are tentative. For those of you who know me, I’m sure you realize how different this is for me. What a different rhythm to my day! Cancer gives a person all sorts of unforeseen learning opportunities.

Thank you!

I really appreciate all the ongoing support, prayers, good wishes, meals for C, errands, and rides.  I’m so fortunate to have such a loving and caring community helping me get through this.  Sending you all lots of love back.

Finishing today!

Hi friends. Just wanted to post a quick update: I’m scheduled to have my last two radiation treatments today, then I’ll be done!

I asked if they could do two on Friday, instead of the last treatment on Monday, and they said YES, as long as the treatments are 4-6 hours apart. They’ll do #29 in the morning, #30 in the afternoon.

It will be rough on my body doing two in one day, but I’m really eager to get on the other side of this, and have my body’s cells heading toward healing. No more getting thwacked. All healing.

Please keep sending healing thoughts my way.

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Yesterday C picked up treats from Cupcakin’ Bake Shop. I’ll bring them in this morning as a small token of appreciation for staff at the UCSF radiation clinic, who have been amazing.

The radiation itself is just 69 seconds!

What’s a radiation treatment like? For me, every weekday for 6 weeks, here’s my experience:

One hour before, I gather things, get in the car, and get driven to SF. Park, walk into building, do COVID screen, walk into Radiation Clinic, be greeted by very welcoming front desk staff. A member of the radiation team calls me when it’s my turn.

They walk me to the treatment area, and I enter a room with a bunch of computer screens. As I enter, they confirm my name and date of birth (I also check it’s correct on their screen). I usually bring a healing meditation (by Belleruth Naparstek available through Standford), so I plug their jack into my phone, and sound starts playing through speakers. (Patients can choose whatever sound they want, or the facility also has Pandora.)

We walk down a short hallway, and turn into the main treatment area, which looks like this:

I put down my bag, take off my glasses and sweater, and lay down on the platform. From that position, here’s my view: a ceiling light mimicking a skylight, various electronics, including a camera to monitor me, speakers to talk with me or pipe in music. Also, two signs X-RAY IN USE and BEAM ON, which light up as expected during treatment.

Once I’m laying down, they hand me the guard to place in my mouth (innocuous but uncomfortable), and place the mask over my head. They snap in the mask, and once it’s affixed, slowly my table shifts on a track towards the machine. For me, being in the mask isn’t so bad. I know that’s not everyone’s experience, but for me, the mouthguard is much more uncomfortable. And the overall effects of radiation suck, but the mask itself doesn’t stress me out.

Once I’m set up, this is an example of my view. The image on the right shows the pattern that’s used at one point during the machine’s cycle. That circular part rotates around me during treatment.

Then staff leave the room (retreating to the room with the screens) and treatment begins:

• X-Ray (30 sec) – This evaluates exactly where my head is. “X-RAY IN USE” sign lights up at the corner of my vision.
• Calibration (a few minutes) – Data is processed to line up my head position exactly to the radiation plan. For me, nothing is happening, I’m just laying there.
• Reposition (2-5 seconds) – I feel the machine tilt or slide me slightly to align with the plan.
• Radiation (69 seconds) – The “BEAM ON” sign lights up, along with a sustained tone. I can still hear my music or healing meditation. The machine’s part rotates around me, moving slowly from the right side to slightly past my nose, where it pauses, turns slightly, and proceeds back the other direction, out of sight past my right ear.

The radiation itself is just 69 seconds!

It’s not actively painful. There’s not much physical sensation during that 69 seconds. It seems maybe I can feel a little tingling on my neck and tongue, but it’s so minimal I wonder if it’s psychosomatic. And it’s all very quick.

The staff announce “we’re done” and I remove the mouth guard. They come back into the room, unclip my mask and lift it off. The table shifts me forward, out of the machine. I put back on my COVID mask, hop off the table. I grab my bag, give the staff a quick “see you to tomorrow.” The team is already putting away my mask, sanitizing, and preparing the table for the next patient. I get my phone and make my way through the hallways, out to the waiting area, and say goodbye to the reception folks.

Sometimes I’ll see a nurse, nutritionist, or doctor after my treatment, but usually not. I just walk out, meet the person who drove me, and we head back to the parking structure, drive back across the bridge, and another treatment is done.

Yowch! 4 more treatments

After today, I have 4 more radiation treatments.

And how am I doing, you ask? Well, as expected, symptoms have continued to increase. Yowch! No surprise, but it sure is grueling. I didn’t lose weight last week, so that’s good…but eating is so darn painful!

I’m currently minimizing my talking, because my mouth hurts so much. It’s also hard to understand me. C is being a good sport making various phone calls for me (pharmacy, insurance, FSA, etc.). Over the weekend, I went for a walk with a friend, and planned in advance it was both our jobs to make sure I didn’t talk much.

Also, the skin on the right side of my neck is getting burned, like a very bad sunburn, from the radiation. If you see me, I’ll have a white thing around my neck. It looks somewhat dramatic. From my perspective, though, it feels soothing. It’s a “dressing” which basically means a wound covering – in my case, manuka honey beneath a pad, and light elastic to keep it in place.

I expect over the next few weeks my symptoms will continue to increase before they turn around. In that time, I might not be up for posting as much (especially if I start some more significant pain meds), but tomorrow I’ll post about the radiation treatment itself. Spoiler alert: the treatment is surprisingly short.

Here are recent photos, snapshots of my daily experience:

Ouch

So, my update is pretty much the same as last time — symptoms continuing to get worse, as expected.

This is a bit of a downer post, so sorry about that, y’all. But it’s real. The doctors regret putting me through this, but the only way to the other side is through. (The post does end with a positive note.)

If you’re up for continuing to read, here goes…

Food

As predicted, getting enough calories & protein into me is a challenge. They weigh me every Thursday, and I lost a few pounds this past week. I’d have been surprised if that wasn’t the case, to be honest, because it’s become quite painful to eat due to the mouth sores.

To have a meal, I generally first swish with a numbing solution, then eat quickly before the solution wears off. I have 3 different solutions: UlcerEase, Lidocane, or “magic mouthwash” (a Lido/antacid/diphen compound). The solution works a little, but not entirely, and it means I can’t taste the food. After the meal, my mouth often hurts a lot because the sores have been aggravated by eating. Oy, my poor mouth.

The doctors (and speech & swallowing therapists) encouraged me to keep eating as close to a regular diet as long as possible, so my chewing & swallowing muscles don’t atrophy, but they also know that as treatment progresses, that’s just not possible. Apparently, continuing to eat by mouth (though painful) leads to better outcomes than those who go on a feeding tube, because patients don’t need to re-learn how to eat and swallow. A feeding tube is an option if needed, and while I would rather not have one, I have heard from other patients that it can be such a relief to get one, if needed.

Thursday evening, I told C I might be at the point of needing to stop eating anything that requires chewing at all, even soft things. But also, liquids are quite painful based on where the sores are (we got silicone straws, hoping a straw might bypass the sore spots, but they didn’t work). Yogurt consistency seems most doable right now, so we’ll have to do some experimenting to thicken up the liquid recipes we have. That might be our next project.

Talking

Talking irritates my mouth sores. I’m somewhat hard to understand.

This is a bummer because it makes connecting with friends more challenging. But I’m trying to stay connected anyway!

Sometimes I forget that I’m hard to understand. Then I need to converse with someone random in public, someone who doesn’t expect a speech impediment, and I watch as they realize I’m different. Folks with hidden disabilities deal with this all the time, of course, but I’m experiencing it in new ways, with my speech as it is.

Pain

This is the first time I’ve taken a serious regimen of pain medicine for an extended period. So in that sense, I’m fortunate as a human being. It also means I’m navigating new decisions. It’s different trying to get through each day when severe pain is a factor.

I’m currently on Tylenol + Gabapentin. After a couple days on gaba, the Symptom Management doctor quickly doubled my dose of both gaba and Tylenol. I’m now trying out this new level. I also have a cannabis tincture (4:1 CBD:TCH) that I’ll experiment with more after I get a sense of how the gaba + Tylenol combo is working.

It’s new territory for me, navigating pain like this. Keeping the pain at bay isn’t just about my comfort, I think it could impact my nervous system for the long-term if it were overloaded with constant pain for several months. And in the short term, I need to be able to eat despite the mouth sores, to keep up my weight and nutrition.

I think of myself as someone who can usually tolerate pain, and in my regular life I lean towards treating the cause of pain, and tolerating symptoms. I also manage pain by counselling about it, using an approach I learned when I was active in a peer counselling community. (Prior to my surgery, I set up listening sessions with a circle of friends, and taught them some peer counselling principles so they could support me during my post-surgery healing period. They’ve continued to support me through this even longer radiation phase, and I’m incredibly grateful.)

But radiation on the oral cavity has taken pain to a new level. It doesn’t seem good for me to tough it out, for the reasons noted above, so I’m taking what feel like significant pain meds, and will consider something even stronger if needed — oxycodone, which I am very reluctant about. We’ll see.

It feels weird to know my body has pain — or would have pain without the meds — and I’m not feeling it. I’m still not entirely comfortable with that arrangement, but here we are. I have to be able to eat.

Radiation Clinic Staff are Amazing

Walking into the clinic, every day M-F, I’m greeted by very warm & friendly front staff, who always seem happy to see me. (During the radiation prep appointment, a photo was taken of me, which probably helps everyone be so welcoming. Great idea!)

But really, everyone in this clinic does an incredible job being friendly. I was standing in the hall at one point waiting for a nurse to get something and every single person who saw me smiled and asked if they could help. Their approach stands out. It’s really clear, as a patient, that they’re not just doing medical tasks, they’re tending to each patient as a whole person.

There’s a group of 4 staff who regularly work on my machine, and I see them each day. They always greet me with smiles and seem to know exactly what to say. I suspect (hope?) they do this for everyone, adjusting their approach based on what the person brings into the room. Whether I’m upbeat or feeling the pain, they’re still kind and warm.

Symptoms kicking in

Well, symptoms have definitely started kicking in. It’s pretty unpleasant.

There’s low-grade discomfort in my mouth constantly. Foods have started tasting different. A metallic taste is present all the time. My saliva has stopped working so well (dry mouth is called xerostomia). Mouth sores are appearing in new places. As of yesterday afternoon I feel pain with swallowing.

Everything is expected to keep getting worse, until a couple weeks after treatment. I bet in 2 weeks I’ll long for the modest sensations I’ve got at the moment. Ha!

It’s time for me to start figuring out symptom management: what rinses and medications and approaches I’ll use to manage all these discomforts. It’s daunting, but also, I know I can get through it.

Keeping up my food and calorie intake will be a primary goal.

Overall, I recognize I’m fortunate in so many ways, but and also this sucks. It’s hard to balance those — just like in non-cancer times. Same patterns, same challenges. I’m still me.

One day at a time.

Photos of plants from our yard: aloe blooms about to pop, a cutting of aloe for use on my skin to reduce radiation burn, and a bouquet of home-grown calla lilies and (volunteer) feverfew.