All I can Do is Smile


The gray area that I didn’t know existed

My appointment with my oncologist was moved to Wednesday and I didn’t tell anyone (except Kenji) and for that I’m low-key grateful. The appointment left me in unfamiliar territory, something I was not expecting, nor really prepared for.

By the way, before I get on with it, can we just laugh for a moment about the audacity I had in thinking, “Oh, we’ve been here before. We’ve gotten the worst news possible and we handled it. We can handle it again.” (Which is true.)


We have another curve ball. Once again, life shows me just how little I actually control.

The short answer is: I don’t have a definitive answer.

Which is how I found myself, after my appointment (and some retail therapy at Home Goods), sitting at home unable to quickly disseminate the results. Nor did I have the energy or desire to do so. With anyone. Kenji only knew the details because he was on the speaker phone for the appointment (technology, for the win!).

Which, I know, is TOTALLY FINE and COMPLETELY NORMAL. I need my own space. I need to absorb and process the information I’m given. To sit with the emotions and scattered thoughts, and allow myself to be still in that place.

Or be an absolute mess sometimes, too — whatever.

I’m still in that place. I’m restless and panicky one second; calm and collected the next. It. is. exhausting. But I’m doing okay, and I promise to start replying to your messages/calling you back soon.

So, without further ado, here’s what’s true right now:

The PET scan showed activity (uptake). Coupled with my rising CA-125 blood marker (which is at 80 now, versus 60 a month ago, and 30 the month before that) — it means there’s SOMETHING happening. However — and this is a big however — the various uptakes in the scan were classified as “mild,” which means some of the areas could simply be inflammation. The same areas as last year are lighting up though, just less than last year.

Sidebar: Want to know how a PET scan works?

In plainer English, the results of THIS year’s PET scan were BETTER (relatively speaking) than LAST year’s. Even better news, there was no activity of tumors or lesions.

But, they also could be catching it earlier than we did last year.

So there’s that.

Which leaves us with the options: treatment or no action.

Treatment means chemo. There are two drugs, carboplatin and doxol — they can be used separately, or together; we can start with one and add the other; and vice versa. We would not use gemzar because my oncologist believes that was the cause of my issues with the 2nd round of treatment,

No action speaks for itself. We keep doing what we’re doing, but with closer monitoring. We’d continue the blood marker of CA-125, and add back in the HE-4 for comparison. We do another PET in 2 months

We tried the nuclear option (chemo) last time and it almost killed me. So, I’m leaning heavily toward no action.

Before I do that, I’m getting 2nd and 3rd opinions.

The first comes from John Hopkins — my biological aunt works there and has already passed along what information I do have to an expert there. Because nothing can be easy when it comes to healthcare, I have to go to Kaiser in person to get the full scope of my medical record since the online portal doesn’t give me actual imaging.

I’ve also sent the details to Dr. Tierney, and she’s taking a look. I’m stoked she’s already in the Kaiser system, so hopefully getting her access to my records will be less of a hoop jump.

Here’s some other positive news to consider:

  1. I have no symptoms. I’m eating (and pooping, huzzah!) with no issues; my fitness is improving; and I generally feel pretty damn good.
  2. Dr. Tewari (current oncologist) was super open to the “no action” option — he has strong opinions, so the fact that this seems reasonable to him (he used those words) means I’m not totally crazy to consider it.

Here’s the other thing: I can’t (and won’t) blog in real time anymore. At least, not for this portion of the journey. I put undue pressure (read: stress) on myself because I care so much about how all of you feel. I feel obligated to make others feel comfortable at my own discomfort. It’s how I get you to like me. Believe me, I’m working through this in therapy.

But worry not! You’re not rid of me that easily. I will still share news and updates, I promise. Just a little bit later and (hopefully) with less urgency. With cancer, everything can feel like a fire drill and that’s simply not the case. Nor is it helpful to anyone.

Oh, all the lessons this stupid disease keeps teaching me. You know my first. Now, we have this: there’s no reason to get all worked up about anything.

And, just so you can hold me to it later, I promise to ask for help (in the middle of releasing control and not getting worked up).




Things & Stuff: September Edition with Added Science!

First off, I cannot believe it’s nearly October. Time, she is flying! Kenji and I had a discussion recently around perception of time and how it changes as we age. We figured out that a 50 year-old’s perception of a single day is just over a week to a 1-year-old. Put *that* in your pipe and smoke it.

We’ve regained a sense of normalcy this month, with my being back at work full-time. I have never been more grateful to work, love what I do, and feel like I’m making a difference. My brain is happy to have something else to focus on 8+ hours each day.

We’re preparing for another diet change in November. Ever hear of the ketogenic diet? There’s compelling research in mouse models on how it affects cancer growth, and currently, there are nearly a dozen human studies being done. There’s strong anecdotal evidence in human studies with small sample sizes, so we’re going to give it a whirl. Remember that thing about focusing on the things I can control?

Some of the research we’ve looked at:
Nutrition & Metabolism, 2015: The glucose ketone index calculator: a simple tool to monitor therapeutic efficacy for metabolic management of brain cancer

Redox Biology, 2014: Ketogenic diets as an adjuvant cancer therapy: History and potential mechanism

Nutrition & Metabolim, 2011: Effects of a ketogenic diet on the quality of life in 16 patients with advanced cancer: A pilot trial

Nutrition & Metabolism, 2007: The calorically restricted ketogenic diet, an effective alternative therapy for malignant brain cancer

PLOS, 2013: The Ketogenic Diet and Hyperbaric Oxygen Therapy Prolong Survival in Mice with Systemic Metastatic Cancer

The author of the above study was on Joe Rogan’s podcast (episode #994), and talks extensively about the ketogenic diet.

It is a huge shift, and unfortunately, not one you can ease into. This will require the metaphorical light switch — starting November 1, that switch is on! We’re using the month of October to do more research, understand what foods are complimentary or not, and savor our carbs one last time. There’s also the matter of added tests to monitor ketones in the blood, as well as supplements to replace what’s missing from the diet (namely, nearly every damn fruit that exists).

You’ve probably heard of Atkin’s. Atkin’s is based on the ketogenic diet, which most people find difficult to follow. The keto diet has shown efficacy in childhood epilepsy, where traditional treatments have failed (tons of research has come out of John Hopkins around this). The make-up of the diet is 90% fat, 8% protein, and 2% carbs.

Because I have no gall bladder, processing that amount of fat is problematic, so we’re looking to apply the modified ketogenic diet — which increases protein intake to 65%-70%. Carbs stay the same.

Essentially, the point is to bring your body into a state of ketosis — where the body’s cells use fat for its energy source instead of sugars. Cancer cells cannot do this, so the thought is they starve and die.

Both my oncologist and breast specialist are lukewarm (at best) about diet making a difference in cancer volume. I get it. There’s no definitive evidence (yet), so they can’t exactly say, “Yes, do that and your cancer will go away!” However, my former oncologist is positive about it and even participated in a meeting a few weeks ago in Portland with a naturopathic oncologist who counsels on this very subject within the Kaiser system. I’ve inquired if I can be connected with someone like that in Southern California, or if I can do virtual counseling with that person in Portland.

That’s all for this month — and frankly, I think it’s plenty. XO


Status Report: 50% complete with chemotherapy.

I’m feeling better and better (wtf?) each round. Or rather, I’m getting used to what each round means for me. I recall last time I went through chemo telling Kenji I was finally getting the hang of everything the 5th round.

Out of 6 rounds. So not helpful.

The fact that I’ve found a sort of rhythm by the end of Round 3 hopefully means that the final 50% of this bullshit will be manageable in a way it was not Round 1.

The first 4-5 days after chemo are the worst with the 3rd day being just miserable. The fatigue is becoming cumulative, but I find that if I have some momentum (putter, putter, putter) I keep the fatigue at bay. I often wish this puttering time was spent working on fitness, but some days I feel lucky to just be able to keep moving around. And so I remind myself that I am lucky, and my body is doing the best it can, and it’s a little busy kicking cancer’s ass right now, so chill out already.

What am I doing for fitness though? See below, or skip to the next paragraph. (read: Hilary do this.)

That being said, I am doing yoga on a mostly daily basis. I’ve got a rad app from Gaim that gives me 15-60 minute themed series, from relaxation to stretching. I also have passes for Bikram Yoga, which is my zen place. While that’s all fine and good for my core (which is the core (haha) of other strength), I’ve decided I need more of a circuit-style routine focused on the different muscle groups. Leg day, here I come. Activities like riding and walking just seem to make things worse. Light weights with high reps will be good. I’m glad I’ve kept my gym membership.

Moving right along, I celebrated my 36th birthday yesterday. I had a lovely celebration with family.

I’m getting out of the house; friends are visiting during calls for human interaction; I’m doing some hourly work for my day job. Minus the whole cancer thing, I’m doing better than about 99% of the world.

So that’s what’s up. Looking forward to a full week off and starting my 4th round on my 5th wedding anniversary. Kenji is taking me… how romantic. We’ll be sure to take a photo to show our celebration, haha!

Have a wonderful rest of your week and a most excellent weekend!


Social Experiment

Yesterday, I busted out the blue wig. I got far less looks that when I go au naturale, but that could be because I was shopping at Japanese stores. Most people didn’t give me a second glance. One woman asked if it was my real hair.

Yes, this is really my hair.

In any case, I’ll bust it out a at least a few more times because it keeps my bald little head warm! 🙂

On to the administrative item: my visit with Dr. Tewari last Thursday.

Side note: The man NEVER sits. EVER. I learned a few months ago that one can receive a pelvic exam with the doctor standing up.

We’re fairly certain that the fever that landed me in the ER was due to the gemzar chemo, not an actual virus. I’m apparently on a higher dose than normal because I’m young and can handle it. I’ll naturally “de-dose” as my CA-125 counts go down and there’s less cancer. We do a full body CT the week after my full 3rd round. From there, we’ll see what progress has been made.

I almost wrote, hopefully, blah blah blah — but I stopped myself. Hope is all fine and good, but I KNOW that my results will be good and that the final 3 rounds will kill the microscopic bits of this bastard cancer. I have to keep thinking this way, or else the “what if” voice creeps in.

This may turn out to be a long term fight, but for now, I’m not considering that an option.

“Whatever comes, face it on your feet.”

– Lan (Robert L. Jordan, “Wheel of Time”)


How quickly things can change

Hello dear friends and family…

Last week the BFF came into town and I had a decent amount of energy after Day 1 of Round 2. We had lunch with my MIL, bought weird masques that moisturize your face AND make you look like a cat (those crazy Japanese)….


I look totally normal and not like something from your nightmare

She cooked and cleaned, and all around was delightful to have. Duh. I was sad to see her go Friday night. So sad in fact, I landed myself in the emergency room. (I’m KIDDING Hil. It’s okay that you left when you did!)

Let me back up.

For Day 8 of Round 2, I got the pleasure of a blood transfusion because I was anemic. I received two units, one of O- and one of O+ (I’m O+, anyone who is O- or O+ let me know so you can donate your blood to me should I need another transfusion. They usually require 10 days lead time). Then I received my regular chemo.

The nurse kept going on about how I was going to have all this energy and to take it easy (ha), but when Saturday came, the opposite was true. I spent the day sleeping, getting very angry with Kenji each time he woke me up to eat, or to walk, or to eat some more. In hindsight, this was the best thing for me (yes, Kenji, I admit it) and I felt a bit better on Sunday.

My brother came by to color easter eggs, where we learned it’s far more fun as kids who don’t have to set up and clean up afterward.

Mostly though, I was just cold. I couldn’t get warm. Chills constantly, so much so, that I kept taking hot showers to get my core warm.

So, when it was time for my white blood cell shot at the nurse’s clinic, I went with base layers on and a beanie. And a scarf and a jacket. When the nurse checked my vitals, I had a 103-degree temperature. I blamed the beanie and took it off, waiting 5 minutes and we tried again. Only 102 this time. Protocol dictated that we notify my oncologist and then off to the ER I was to go.

They made me remove my many layers, put on one of those bullshit gowns and gave me a sheet to cover me. Turns out, your body has chills when it has a fever as well as when you’re cold. So I had to lay there shivering, while they took every possible test and bodily fluid from me to see where the fever was coming from. Then, they gave me some Tylenol to bring the fever down, and general antibiotics to start killing whatever may be causing the fever.


Giving thumb’s up because what else could I do? I felt fine minus freezing my ass off in that room. And yes, the rest of the hair is gone. It was coming out every time I did my hair. This is easier to manage. Watch a time-lapse video of me shaving my head. (Kenji got the spots I missed.)

After waiting for initial test results, which all came back clear, the on-site doc made the call — they were keeping me overnight for observation. Which technically, wasn’t “being admitted” in Kaiser-land, whatever that means. Some of the cultures that were taken (throat, brain — er, I mean, nose) would take a few days to come back, so I was to be in the hospital until they did so. (All I know, is we only paid $180 for three days at the hospital, so I think “observation” gave us a discount. I’ll take it.)

All that being said, being in the hospital sucks.

Your ass is constantly hanging out of your gown, they’ve got you on an IV for fluids so you have to pee every 2 hours, and the constant machine beeping due to my IV placement was a crazy-making. The nurse on my LAST DAY finally showed me how to reset the IV. Would’ve been helpful two days sooner!

But seriously, the staff at Kaiser are incredible. Every single person I encounter there is courteous, kind, and wants to help in any way they can. They kept apologizing that they couldn’t figure out where the fever was coming from.

They nailed down that everything was clear yesterday (April 18) and spoke with my oncologist, who mentioned that sometimes the chemo itself can cause fevers.

Well, hell.

I meet with him tomorrow, so we’ll go over what the plan is moving forward. I’ve already got my trusty thermometer to check my temp daily (98.9 today) and keep a better eye on that.

And now I’ve got 15 days off. Hoping for more energy as the days go by, but I’m glad to have made it through that latest ordeal. Leaving the hospital for home made me SO happy.

Shout out to my mother-in-law for staying with me both nights since Kenji had to be on the road by 5am both days, and that’s hard to do sleeping like shit in a hospital room where you aren’t the one in the bed. My support systems makes my cup runneth over.

So, we’re on our way back up! We’ll see what tomorrow’s appointment brings.

Sidenote: I’ll be adding new chemo times and visitation hours to the schedules soon! Be sure the check in and sign up if you’re able!


Looking towards Round 2

First off, I fixed my typo of Round 2 being done.

Freudian slip. I wish.

I count myself correct in my previous assertion that I’d forget how shitty this would be.

And I know I’ve complained about constipation before — probably half a dozen times (I’m not even going to go back to round 1 and find all the times) — but seriously! That’s the one thing no seems to think is pertinent to mention. CHEMO PATIENTS OF THE WORLD: GET YOUR STOOL SOFTENER NOW!


I had to wear a panty liner to my psych appointment because I was prone to loose stool, or as the kids these days call it, “sharting.”


I had to live it, so you have to live it with me.

And with that, last week sucked a lot. And so did this weekend.

Today is 1,000% better. Things are moving along (if you get my hint, wink, wink, nudge, nudge). My next round starts of Friday, so hopefully this feeling continues (I’m not even asking for better).

My appetite is still a struggle. I got as low as 117lbs, which I haven’t seen since I got out of the hospital the last time after 7 days without food; and before that, probably junior high school?! But, I’ve worked with my psychiatrist to change up one of my medications for another. One of the side effects is increased appetite. The one that I’m nixing is known to cause nausea. Done and done.

I’m also still diggin’ on those cream shakes. Kenji bought dates this weekend, so I know what I’ll make this week for my “Fat Shakes” (which we’ve aptly named). I call my sulforaphane shake my “She-Ra Shake.” That’s a whole nother blog post on it’s own, and I may make Kenji write it himself.

Moving along…

Fatigue is definitely an issue overall. That’s why I like having something to look forward to on my good days so, you know, I actually have to shower and get dressed. Damn you TempurPedic for making such a perfect product! I’m talking with my boss this week to see how I can continue to contribute — without adding any stress to my life. It’ll be the same situation as before, where I’ll work on projects that aren’t time sensitive.

That’s all for now, folks.


Round 1 in the books

I’m on my way to the upswing from last week’s infusion, which has shown to be a little easier than the first week’s. The nausea is still ever-present — where I was told by my doc I’d only feel that way for a few days after the infusion. Ha. I am on Lexapro, which does list a side effect of nausea so I’m meeting with my psychiatrist tomorrow to go over the best mixture of drugs while I’m on chemo.

And added new side effect not yet experienced with chemo: mouth sores & an aversion to certain tastes. (So long, spicy food…) You can’t imagine how inconvenient these little fuckers are. I’m nice enough to spare you any photos, but imagine really, REALLY chapped lips on the outside, and like you bit all parts of your tongue and all sides of your mouth on the inside. That has meant a lot of soft foods (THANK YOU OLIVIA!) because just the act of eating can hurt.

I’ve got this stuff called “Magic Mouth” (not kidding, that’s how I order it at the pharmacy) and I use it at night, so I can get my night guard in. It’s essentially lidocaine in liquid form (no swallowing, just swishing).

Other than the severe constipation and … sorry, I seem to be out of symptoms at this point … I’m actually doing quite well. Now that I know SOFT foods, that’s helped a lot in the mouth pain department. I was losing so much weight that Patti (Oncology RN) told me one trick they tell their patients is to swap out milk for heavy cream. I make the best cream, banana, chocolate peanut butter protein shake you’ve ever had. If you’re looking to gain a couple pounds…

Of course, I can only take that shake in small quantities, since I’ve been reminded I have no gall bladder. (Seriously. I forgot I don’t have one of those.)

Thanks to everyone for reaching out, coming by, and just overall for your support. It helps my fighting spirit burn a little brighter each day.