Counting: 9 of 30

As it happens, my 6 weeks of radiation take place mostly during the Omer (Jewish practice of counting 49 days from Passover to Shavuot). So I’m doing a lot of counting at the moment.

I’ve completed 9 of 30 treatments. Sore spots have recently arrived in my mouth. Lovely name for them is “mucositis.” The radiation onologist noted it’s early for mucositis to start. But here we are.

This is a longer post today, so here we go…

I’m spending much of today attending (remotely) a Head & Neck Cancer Symposium for Patients & Caregivers, hosted by Stanford. It’s useful to hear perspectives that are more generally related to my situation, but not specifically curated for me. It’s hopeful/helpful, but also giving me more perspective about how much is unknown regarding my body’s long-term response to radiation.

I really wish I didn’t have to have radiation. But not doing it seemed unwise…so here we are.

Sleep has been a new focus for me, especially during weekends. During sleep, cellular repair takes place in particular ways. (I’d heard this before, but hadn’t given it much thought.)

My understanding is that radiation interferes with cancer cells by disrupting their divide-and-replicate process. It also interferes with this process in regular cells — but regular cells divide less often. Cancer cells’ replication process is more likely to be occurring (and thus be disrupted) during the very brief period of daily radiation.

I get radiation M-F, with a break on the weekend. Studies have shown that treatment 7 days/week doesn’t lead to better outcomes compared to 5 days/week. Turns out the weekend break is probably useful for the body’s non-cancer cells to repair and recover from radiation. Since sleeping provides special opportunity for repair, I’m really prioritizing sleep during weekends.

So, it feels like I have less time. I’m not using weekends to see people as much, I’m not making many plans…because I want to be able to rest whenever I get a sense of tiredness. Naps aren’t my usual routine, but I’m giving them a shot some days.

Overall, at this point about 1/4 of the way through treatment, I’m holding a lot of uncertainty. When will my food intake shift to soft foods? (I’m still eating solid food, though I chew & swallow more slowly than usual.) When will mouth sores get more painful? When will other symptoms kick in? How long will they last? Worrying or stressing about it won’t change the course of things, so I’m trying to just sit with the unknowns. I mostly just need to get through it, best as I can, and doing what I can to come out strong on the other side.

Being present in the current moment is helpful, and remembering I have a strong body, a healthy mindset, and a really good support network.

Thank you all for being a part of my support network. Local friends providing rides, running errands, and making dinners for C — it’s all really helpful. Everyone keeping me in mind for healing thoughts/prayers, sending cards — that’s also making a difference. Please know that even if I haven’t said an individual “thank you,” I’m feeling your love and appreciating you.

Sending everyone wishes for good health and a restful Shabbat and weekend.

Radiation has begun

Hey friends,

So, radiation has begun. Today was Day 3.

The actual experience is pretty anticlimactic. Treatment takes less than 10 minutes. Then we drive home. One day there was parking drama (no spots?), another day we grabbed snack in the cafeteria. On the way home I have a self-care routine including aloe (from our yard!) and lotion on my neck, and tongue/neck stretches.

Maybe in another post I’ll share more details about what it’s like, the average visit. But for now, I’m just taking it hour by hour, moment by moment. The people who work there are all really nice, they do an excellent job making folks feel comfortable.

Just wanted to let you all know that it’s rolling. I’m a little trepidatious about symptoms that are coming, so I’m holding that awareness…while also noticing that I’m okay at the moment…doing well, even.

Looking forward to Passover seders this weekend, and wishing well to all those celebrating holidays.

Thank you all for the love and support! Knowing that you’re there makes a difference in how this feels for me.

Life is normal, but not normal

Hey friends, quick update:

My first radiation appointment is scheduled for Tuesday, 4/12. I’ll have 30 treatments, 5 days/week, for 6 weeks.

We don’t yet know what time my “regular” daily appointment will be — it will get assigned on Tuesday. Once we have that set up, we may set up a schedule to get help (and company!) for drives to/from UCSF.

I’m doing pretty well healing from the surgery, so if you see me, you might not know I’m going through all this. I chanted kiddush for the first time last night. I’m in a space of trying to enjoy the reprieve. We really don’t know how bad my radiation symptoms will be, it’s different for every person. We bought a garage freezer and are starting to fill it with smoothies, so that’s fun. And going to a bat mitzvah this morning in person! So life is normal, but not normal.

Mask Making

Excellent sign at the FNA clinic

On a day when I spend 6.5 hours at UCSF appointments (plus driving), it’s probably not reasonable to also expect myself to do all the other stuff I’m supposed to do daily. Right?

Most of my Thursday was spent at UCSF, mostly in the radiation clinic, where they reviewed all the symptoms (again but with emphasis on symptom management), told me a bit about clinic routines, made my radiation mask, then ran simulations in CT and MRI machines. I also had another FNA (fine needle aspiration) to check a lymph node in my neck, so they can calibrate radiation accordingly. The FNA doc told me on the spot “no cancer cells” before I even left the room, which I appreciated, and I saw my lymph cells under the microscope. (Cool!)

Current radiation start date is April 13. If they can make it sooner, I’m game. We’ll see. Stay tuned…

Detail Overload

Wow, there’s a lot going on.

For my birthday today, March 25, I plan to go for a walk in the UC Botanical Gardens, and attend (online) a mincha healing service that’s part of the Reconstructing Judaism convention. In the evening, we’ll have Shabbat dinner, and likely play a game or two of Dominion.

Radiation prep continues. So much going on! Steps that stood out over the past week include: PET/CT scans, 2nd opinions confirming radiation plan, a nutritionist appointment that totally rocked, dental oncology appointment, and overall, just pushing to keep everything moving forward.

If you want more details (like if we’ll be seeing each other and we’re likely to have a conversation about what’s up), keep reading below the photos.

Remarkable orchid from our neighbors’ backyard.

A radiation mask like this will be made for me next week.

Here’s a bit about what I’ve absorbed, learned, and done over the past few weeks…

• Food – I’m eating nearly anything I want. (potato chips! salmon burger!) Well, to be honest, okay, I’m not eating raw veggies yet, they’re a lot of work. Chips take some attention. Soft foods are still easier. But I could eat salad if I really wanted to.
• PET/CT – Scans were done last Friday as part of radiation prep. UCSF said they were clear (yay!), though 2nd opinion from Stanford suggested we take a closer look at one spot in my neck. So, we’ll do an FNA (fine needle aspiration) as part of radiation prep. That way they can adjust the radiation to be an adequate dose in the neck based on what they find. Since I’m having radiation anyway, and it can only be done once on my mouth/neck area, we should make the best use of it possible, and not under-dose.
• Radiation recommendation – I’ve learned a lot about why they recommended radiation this time, but not in 2010. It has to do with a number of things, including the presence of lympho-vascular invasion (the tumor tissues overlapped with lymphatic system cells), tumor size/location, closeness of margins, and that they took out most lymph notes from my neck in 2010. The prior lymph node removal is a key factor…this time they can’t take out and check a bunch of nearby lymph notes to confirm the absence of cancer in the lymph system. They could have that reassurance in 2010, it’s not an option now because the nodes are already gone.
• 2nd opinion – It’s reassuring to have seen 2 providers at Stanford, who affirmed UCSF’s recommendations are solid. If Stanford had said “you could go either way on radiation” that would have put me in a pickle, to have such a big decision up to me. This way, I’m heading into radiation confident I’m following science’s best advice…which will help given how crummy the side effects will be. I saw the chair of Stanford’s Radiation Oncology Dept, Dr. Quynh-Thu Le, today (grateful the chair made time in her schedule!) so I’m feeling very confident of the guidance. The surgeon I consulted with is John Sunwoo, whose lab has a cool 9-second video of NK cells killing cancer cells. Watch on Settings>speed>0.25 for maximum impact. What a great image for my anti-cancer mediations! My body can do that?! Ka-pow! On the annoying side, trying to get Stanford to see UCSF’s referral/consult request was a totally dysfunctional process, let alone getting images transferred. Sheesh.
• Nutritionist – a highlight last week was an appointment with Neha Shah, a nutritionist working at the UCSF Integrative Cancer Center. First person I’ve worked with who had a ready-made list of low-FODMAP smoothies for cancer patients on a soft food diet. Whoo hoo! Prior nutritionists I’ve seen there haven’t been quite as knowledgeable about FODMAPs as I’d hope for, but Neha was on it! She works 3 days/week in the GI center, 2 days/week in the cancer center, so she had the perfect mix of knowledge to support me.
• Dental oncology – radiation on the oral cavity will have a life-long impact on the health of my mouth, jaw bone, and salivary production. Any pending dental should be done before radiation starts, so I saw a dentist specializing in oncology who confirmed my teeth are currently in great shape, so no dental work is needed.
• Professionals – there are so many providers supporting me. Do you believe this? Here’s a list: acupuncturist, biofeedback provider, chiropractors, dental oncologists, dentist, massage therapists, nutritionists, oral dysplasia specialist, primary care physician, radiation oncologists, speech & swallowing therapists, surgeons, symptom management services, therapist. Plus a team behind each person, such as a medical practice coordinator (those coordinator roles really get shit done, let me tell you), a nurse, a scheduler, and the approvers who wrangle insurance authorizations.
• Gratitudes:
  • I’m incredibly fortunate to have access to solid health care, and to live in a place where I have access to not one, but two, top-notch cancer centers
  • For the rides to/from Stanford on Wednesday and Thursday
  • For family and friends with medical knowledge and resources, answering additional questions and guiding me
  • For those doing supportive listening, especially as I was healing from surgery
  • Friends helping organize support, providing support
• Next week is likely to include a FNA (fine needle aspiration), blood work, and “simulation” to prepare for radiation treatment including making the mask I’ll wear during radiation.
• Timing – I had hoped to start radiation April 4, but it’s looking like that might get pushed to April 11. I’m a little worried it’s not sooner — it will start 8 weeks after surgery instead of the recommended 4-6 weeks — but at this point there’s nothing to be done. To be honest, I don’t know how anyone could have started 4 weeks after surgery, given the timing of appointments, but if that’s the recommended protocol, I’m also thinking “why didn’t it happen?” But for now, I can just proceed with next week’s appointments and keep moving things as fast as possible.
• Tongue tension mystery – as noted in my March 4 post, this is a puzzle I’m still working on.

Overall, I’m doing well, healing. Especially if you’re still reading <wink> thanks for being with me on this journey. Your ongoing love and support are sustaining me.

Brief update

Since my last post, I’ve learned a LOT about radiation — what’s involved, why we’re doing it, dental care needs, what we do/don’t know about symptoms & recovery, nutrition tips, and much more. It’s a bit overwhelming, but also good to have more clarity, to know and understand stuff.

I hope to have energy to write about those components in the coming days, but in the meantime, just wanted to affirm for everyone that my healing from the surgery continues to go well. I am off the soft foods only meal plan for now, adding more things back.

Currently, I’m feeling a mix of…

• wariness of the coming radiation regimen and symptoms
• gratitude that surgery site is healing well
• overwhelm from all the “shoulds” on my daily self-care ToDo list (ironic, right?)

My birthday is March 25. I’m not doing anything big, but snail-mail birthday cards are warmly appreciated!

I skipped over those chapters

Well friends, there are a lot of positives to share. Friends who have seen or talked to me tend to reflect something along the lines of “you’re looking really good” or “your speech is so much better.” And it’s true! In many ways, my healing is on the right track: my tongue mostly doesn’t hurt, my speech is definitely improved, and I’ve moved on to soft solid foods (pizza! polenta! mazta brei!).

Of course, inside there’s a lot going on. There’s been a lot of emotional labor this week, in my journey through this experience. And I’m trying to aim towards taking care of myself, my physical and mental health, through it all. I wish I were better at directing my energy and time where it would be most productive & helpful…but we all have ways we’re not paying attention to the intended things, times we’re focusing in places other than what we wish we were focusing on. This is just being human.

One component I want to be focusing on this coming week is thinking ahead to radiation, which may start the week of March 28 or April 4. It would involve 6 weeks of treatments, 5x/week, at UCSF. (Pending a few tests, 2nd opinion, prep appointments, etc…nothing is certain.)

This coming week, I need to do some reading, figure out what questions to ask, learn more about radiation. As I said to a friend, “I skipped over those chapters.” That’s literally true: I have books about oral cancer (mostly from SPOHNC, Support for People with Oral and Head and Neck Cancer), and I’ve just ignored the chapters on radiation, chemo, and other interventions that are aspects of the journey for some oral cancer patients, but haven’t yet been part of mine. (Just to be clear, of those only radiation is applicable for me right now.)

So, this coming week feels like a moment to pause, regroup, and get ready for what’s next.

Thanks again for all the support. We’ve put the MealTrain on pause for now, but might restart depending how radiation goes. (C getting meals was really helpful!)

Update: radiation recommended

I was going to title this something about “Soft foods and a tongue clenching mystery” but at an appointment this morning we learned radiation is recommended. This has now eclipsed a lot of my other feelings and thoughts.

I don’t have details yet, and nothing’s final, but the possibility/likelihood is sinking in. I’m sure I’ll share more about it in a later post. Right now, I’m a bit overwhelmed.

I want to say a big THANK YOU to everyone who’s been bringing food for C, running errands, sending cards, and keeping me in your thoughts. It’s all helping!

That’s the main update.

For those interested in hearing more about how my week has been, keep reading below the photo montage…

My days have been surprisingly full, stuffed with healing things I’m supposed to do. Here’s where things stand, what’s taking my attention:

1. All the things. There’s a lot I’m should do each day: eating small meals 5x/day, tongue exercises, daily walk, mindfulness-based stress reduction, healing meditation, appointments, and staying on top of all the ToDos. It’s been hard to end each day feeling like I haven’t done enough, so one of my next projects is to set realistic goals/schedules. The email signature of a new friend — a fellow head & neck cancer survivor — reads: “It is never, ever, ever useful to feel bad about ourselves. EVER!” So true. I’m trying to take that to heart.
2. Cooking & eating. Eating is no longer painful. Yay! It’s been challenging, boring, and daunting to try to get enough calories each day. I’m still on a mostly liquid diet (soups, smoothies, pureed veggies with bone broth, yogurt, ice cream), but have successfully started on soft foods — scrambled eggs and jook so far. Though I need to rinse my mouth after the jook or eggs, that will no doubt get easier over time. I can see progress: two weeks ago I had to zotz the jook with a blender, but this week I could handle it without blending.
3. Biofeedback & mystery tongue clenching. Those who have been following my journey for a while may recall that I have an unconscious habit of pushing my tongue against my molars, when focusing, sleeping, doing dishes, and probably lots of other times. Over the years, I often see teeth imprints on the right side of the tongue, sometimes becoming sores. This repeated friction may actually be the reason behind the dysplasia and cancer. My medical providers have tried everything they can think of: mouth guards (the imprint shifts to where the edge of the mouth guard hits the tongue), shaving the edge of molars to make them less sharp (mitigates but doesn’t resolve things), biofeedback (tried in 2011, now trying again). I have lots of cognitive behavioral therapy strategies in my tool belt, but this is a special challenge because it’s unconscious, invisible, hard to measure, and numb since 2010. This continues to be a mystery, and I continue to try things, including, right now, a focus on biofeedback and learning to relax my body, including my tongue, more completely and more often. It’s perhaps similar to — but not the same as — tongue-thrusting or clenching the jaw, and medical providers haven’t been able to give me a solution. If anyone reading this has experience with addressing unconscious tongue movements that I haven’t yet tried, or knows a provider or approach that might help, please leave a comment or send me an email.
4. 2nd opinion. I’m likely to get a 2nd opinion from Stanford.
5. Paperwork. The paperwork associated with disability insurance and employment stuff has taken more attention this week than I would have liked. Hopefully it’s all on track for smooth sailing from here on out.

Thanks again to y’all for being here.

Daily gratitude: One benefit of friends shopping for us is that they get different stuff. I was delighted when someone got a different brand of vanilla yogurt – and it was amazingly delicious!

It gets better

My new shirt sums it up.

A couple days ago, a friend’s email said: “I hope that just writing the blog enabled your body to turn a corner. That’s the hope.”

Indeed, something shifted since my last post. Eating is less painful. Not pain-free, but not as bad. I’ve even stopped chasing the next dose of acetaminophen. (“Is it time yet?” has shifted to “Hey, it’s been a while since my last Tylenol.”)

Perhaps my friend is right, and talking/writing about things helped. Perhaps it’s just time, and the magic of my body healing. Whatever the reason, I’m grateful.

Shabbat shalom, my friends. Thanks for all the support and love.

“It shouldn’t be this hard to eat chocolate pudding”

So…it’s been a hard week. Getting through, but not fun.

It’s still hard to get enough calories in me. Last Friday, something shifted and eating got more painful. (Really? Sheesh!) For a short while I could do scrambled eggs, but now it’s back to liquid foods, generally room temp or cold, with a little thickness like smoothies or creamed soups/veggies.

It’s also sinking in that they took more tissue than anticipated, and bringing up all sorts of feelings. I wish the surgeon had made time to talk to me about this sooner, but I won’t get details until my next appointment, when we review the path report together. It’s frustrating to wait. But I’m aware medical systems are overloaded these days, and I’m not their only patient.

I know it’s early in my recovery, and I know it won’t be this hard forever, but at the moment, it’s rough.

One provider on the surgeon’s team said recently that it may take 3 weeks for eating to get easier…so maybe by early March.

Some of you might be wondering about pain meds. I don’t want/like heavy pain meds, so liquid acetaminophen (Tylenol) is my thing. They keep offering me oxy-stuff, narcotics, I keep declining. I’d added ibuprofen in when eating got so painful, but after a minor bleeding incident that’s off limits again. They recently prescribed Gabapentin, which we will pick up this afternoon — the liquid wasn’t immediately in stock. We’ll see how that goes, likely will make me drowsy.

The struggle to eat enough is the biggest hurdle right now. I’m definitely losing weight. C and I are working hard. My tongue is working hard, as it re-learns patterns of movement. It’s a slog.

The meals for C have been really helpful, and new slots are on the mealtrain. (If you’re local and want the link, send me an email.) Note C’s colorful abundant plate in the Valentine’s Day table photo below.