All I can Do is Smile


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Shingle all the way

The holiday season is upon us!

Just kidding.

Sort of. (I’m sure Costco will have their Xmas display any day now…) It’s just I like a punny title and that’s all I could come up with today. Bear with me, as today is the first day it doesn’t feel like I’ve been punched in the face.

So yeah, I got/have shingles.

On my face.

Again.

This time, it occurred in and around my left eye. Also this time, I addressed it FAR SOONER than I did the last time (11 years ago now), so I’m calling this a win, even though getting shingles is definitely, definitely NOT a win.

So much for heading into full-time work with a smooth transition from vacation land. We had a rough travel day coming home, which was followed by many sleepless nights as I got back on the California clock. Turns out, sleep deprivation really messes with your immune system, among other things. My eye had been bugging me since our travel day, but I assumed it was from some rogue piece of sand irritating my eye. Upon closer inspection in the mirror a few days later, I immediately knew what I was dealing with.

And immediately said to myself “FUUUUUUUUUUUCK.”

And then promptly got my ass to urgent care.

The receptionist (bless her heart) red-flagged me so I got in right away (I had barely picked up my magazine of choice from the waiting room when my name was called) and my self-diagnosis was confirmed, much to my chagrin. A course of antivirals was obtained. (Valtrex, which not only treats genital herpes, but also herpes of the eye, which is exactly what this case of shingles is. Fun fact.)

Ophthalmology wanted to see me as soon as possible and OF COURSE the department upstairs didn’t have any availability, but a location in Anaheim did, so off I went. From there, I received 2 more prescriptions and upon filling them, discovered one required compounding and wouldn’t be ready for an entire week. Not exactly helpful. So an alternative was suggested by the doc, aaaaaaand that alternative was not available at that particular pharmacy. Or any other pharmacy that was remotely near where I live.

But it was available in Downey.

Tour de Kaiser facilities, ho!

I got to Downey, got my meds, and then got to remember why I don’t do anything north of Tustin on a Friday afternoon. Southern California rush hour, you are so cruel.

In any case, I’m on the mend, I’m totally fine, and there will be no lasting damage to my eye. It’s a pretty bitching shade of bloodshot right now, so it’s a good thing I work from home.

In other (more important) news, the latest CA-125 looks good and this whole “holding pattern” thing seems to be working. I meet with my oncologist as well as my breast specialist next month and there will hopefully be nothing to report, except that everything is the same and we continue to march on.

Work starts on Monday (!!!!) and I’m excited and nervous all at once. I’m enjoying these final days as a Lady of Leisure (ha), but I can’t wait to have some structure in my day that isn’t dictated by a chemo schedule. Onward we go.

The Journey of the Warrior

“This is it.

The journey is learning that pain, like love, is simply something to surrender to.

It’s a holy space we can enter with people only if we promise not to tidy up. So I will sit with my pain by letting my own heart break. I will love others in pain by volunteering to let my heart break with theirs.

I’ll be helpless and broken and still — surrendered to my powerlessness.

Mutual surrender, maybe that’s an act of love.

Surrendering to this thing that’s bigger than us: this love, this pain.

The courage to surrender comes from knowing that the love and pain will almost kill us, but not quite.”

– Glennon Doyle Melton (yep, still reeling from Love Warrior. Read it already.)


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Things & Stuff: July Edition

1. Health Status Report
I had a breast MRI last week. Kaiser farms this work out to a 3rd party since they don’t have the right set up (which is to lay face down with my boobs in separate holes, hanging). I forgot how LOUD NOISES MRI machines are, but it was painless and quick, less the IV for contrast. (I almost made it through July without getting poked.)

The results were clear. Yesssssssss. *fist pump*

I spoke with the breast specialist yesterday about the plan moving forward since prophylactic surgery is off the table (for the moment). I’ll do a breast mammogram in December/January & another breast MRI in a year. That way something is being done every six months. It’s scary to know that my chance of breast cancer is still a coin toss thanks to the BRCA1 gene. But onward we march.

Focus on what I can control and release what I cannot. Repeat to self.

2. Read any good books lately?
I recently devoured Love Warrior, though it was sent to me ages ago. Just as in other things in life, timing is everything. I don’t think I was “ready” to read it yet. In any case, it’s wonderful and I, as well as Oprah, recommend it!

You are not supposed to be happy all the time. Love hurts and it’s hard. Not because you’re doing it wrong, but because it hurts for everybody. Don’t avoid the pain. You need it. Be still with it, let it come, let it go, let it leave you with the fire you’ll burn to get your work done on this Earth.

– Glennon Doyle Melton

Another friend sent me a really fun fantasy series called The Circle of Magic. Four books highlight a different child mage and how they learn more about their unique powers, both individually and together. It’s an easy read (meant for ages 10-15, but so was Harry Potter) and I thoroughly enjoyed it.

Any recommendations from you that I can add to my pile of books?

3. Reset button
Kenji and I are headed to Kauai this Friday for 9 days in paradise. We’ve got a beachfront property on the East side of the island, near Kapa’a, and I cannot wait to get on island time. The slower pace of life is just what I need before returning back to full-time work in mid-August.

4. Returning to normal life
That’s right! I’m going back to work come August 21. I am so excited. Truly.

That’s all for now, folks! Will post some photos from HI while we’re there! You know, just to make you jealous keep you informed of the progress. ❤


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On life after trauma

I saw this reposted on Instagram, and it’s pretty damn close to explaining my sentiments as I go through this.

From @bymariandrew:

I’ve been trying to draw something about living through a traumatic experience for a while, but it’s a really sensitive and complex topic, so I’ll just focus on this one part of my own personal experience:

The common conception is that you’re just so grateful to be alive afterwards, but that conception implies that you’re the exact same person you were before trauma. Same person, now with a new lease on life.

In fact, living on the other side of trauma feels like being a different person altogether — and a person who doesn’t quite belong anywhere.

It’s isolating, and is often accompanied by feeling of being a stranger even to one’s own body. It’s not the same Mari who is now just happy to still be here, it’s a Mari who has lost some trust in the world and herself and has a hard time talking about it.

In my experience, it’s frustrating to anticipate a swell of gratitude that may take years to set in, and it’s lonely trying to explain that it hasn’t happened yet.

I’m grateful for the wisdom that come with a brief visit to hell on earth, but it doesn’t exactly look like a new lease on life. Post-traumatic growth is certainly real, but complicated. Journaling helps. Nature helps. People help.

Yep.


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30 Days & What Have We Learned?

It’s been nearly 30 days since my last post. I’m constantly amazed at how time seems to pass in the blink of an eye. There’s much to report, so let’s get this party started, shall we?

Most importantly, we met with my oncologist today and are now officially in “wait & see,” or as I’m going to call it “go forth and conquer” mode. My CA-125 levels continue to stay in the normal range. This is a blood test I will get monthly, in addition to another cancer marker, called HE-4. There’s a small chance that the CA-125 won’t be an accurate predictor of cancer volume, however so far, it has been. That’s where the HE-4 blood test comes in. It’s just another marker for ovarian cancer that we will monitor closely. I anticipate getting a CT scan in September (3 months since my last scans in June), where we’ll track any growth (or not) of the cancer in my pelvic area (currently contained within a lymph node). Prophylactic surgery on the breasts is currently on hold, but I’m still working with a breast specialist to monitor that area of my body.

I will likely live with ovarian cancer the rest of my life and it will be treated as a chronic illness. This reality forces a shift in… well… everything.

That’s where the energy of the past 30 days has been focused. It has meant, in my words to Kenji: “no more fucking around.” My diet has to be on point. My exercise has to be consistent. And my mental health has to be under control. These are the things that I have control over that affect cancer’s growth. It’s my intention to do everything in my power to keep that growth at bay, and to learn to let go of those things that I can’t control.

Frankly, it’s hard work.

The past 30 days have had three main goals: eat well (gain weight!), reduce stress, and exercise. I’m proud to say I’ve put the work into each of these areas and am already seeing gains.

The reduction of stress has been one of the more difficult areas of growth. I continue to see a therapist, and I’ve added a meditation practice to my day. I’m using an app called Headspace to help guide me, as well as track my progress. It’s been hugely beneficial and it doesn’t hurt that the voice guidance is an Australian dude. (Sexy voice = more willing to listen. Ha ha ha. Hey, whatever works, right?)

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Fitness has come easier than expected. Sure, there are days where I have to drag ass to make it happen, but I ALWAYS feel better afterwards. I started with 10-minute intervals on the elliptical and have increased to 25 minutes. I also began a courtship with the bicycle two weeks ago, first riding 7 miles, and last weekend 12. I can do laundry without needing to sit down for extended periods of time. I can cook a meal. These things I took for granted now mean the world to me.

After my stint in the hospital, my weight was a startling low 117 pounds (a number I can’t recall seeing since well before high school). My diet has been focused on whole foods, reduction of processed sugar, and just plain eating enough each day to sustain my body and fuel my muscles as I increase activity. Because we were already implementing these dietary changes into our lifestyle prior to my recurrence, this has been an easier shift to continue. Honestly, the hardest part when first coming home was simply eating enough. Thankfully, we’ve passed that hurdle.

I have another 30+ days before I return to work full-time, and my intention is to cement the aforementioned habits and refine them (particularly where diet is concerned). Being able to focus solely on myself has been weird, but wonderful. Mostly because I’ve never done so before in my lifetime. It’s a great reminder that when we take time to care for ourselves, we are then able to bring the best version of ourselves to the rest of the world.

I’m treating myself with grace and kindness and finding it to be exactly what I need. It’s not easy, but it’s worth it.

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Home Sweet Home

I have 3 days of antibiotics left no more antibiotics left  and there’s really no good word to describe how amazing it will be to NOT have an IV in my arm (I’m on #5) any longer.

Oh, bathtub, I’m coming for you. And pool. And jacuzzi. And basically any body of water where I can soak up the sun/relaxation.

The nurse practitioner I met with this morning for a follow-up agreed enough was enough, and as she put it: “It’s your body.” I said, “We’re done.”

Being at home made the suck of self-administering these antibiotics about a million times better than letting a nurse do it in a hospital. We had a small snafu two days ago when my line came out, but the nurse was able to fix it without having to poke me again. Sidenote: I am now considered a “hard stick” because my veins are tattered from all the abuse of so many IVs, blood tests, and lab work ups.

Speaking of abuse, chemo really took a toll on my body and my doctor has decided that we’re stopping for now. Actually, we couldn’t have continued even if we wanted to — my platelet level went dangerously low (7,000 — normal range is 100,000-150,000), and chemo cannot be administered with those numbers.

I’m not going to lie — I was relieved to hear we’d be pausing.

We were fighting a small amount of cancer with some pretty potent drugs and he was not happy to see me land in the hospital for a 2nd time during treatment. His MO is more “watch & see,” meaning monitoring any growth before taking action versus my more “something is in there, let’s kill it with everything we’ve got now!!” approach, which clearly didn’t do me any good.

We have a follow-up mid-July to decide how we’re going to move forward. In the meantime, the focus is on mental and physical health.

XOXO


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I hate hospitals but I love nurses.

Soooooo…. I’m still in the hospital (day 9). The fevers are reduced but still happening. My red blood cell count is normal, my platelets are still low, and my white​ blood cell count is pathetic but rising. 

The nursing staff at Kaiser continues to be amazing and that’s pretty much one of the only things keeping me sane (the other being the ice cream I have stored in my fridge since I’m neutropenic [Google it]).

Clarity: I have a fridge for bottled water, since I can’t have tap. We’re taking full advantage of having said fridge.

Mostly though, I’m well enough to give a quick update. 

I’m on my 4th IV. At one point I had two going at once. One for transfusions; the other for antibiotics. 

See the blood bring transfused?

The one on my right hand got angry, so IV #4 was on the docket. But not before I had a proper shower. My nether region was most pleased. Three days without a shower will do that to you… Just FYI.

Good amount of swelling

Overall, I’m doing okay. I’m sick of being here. I’ve only had one complete meltdown, which I consider a win when you’re relegated to your room. Hoping for better WBC counts tomorrow. Send me white blood cell vibes. 

XO


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The completion of Round Four and how I’ve found myself in the hospital for the past week.

Fair warning, this is a long post.

To say the fourth round of my chemotherapy was difficult would be a vast understatement. The word “compounding” took on new meaning, as the chemotherapy side effects legitimately were getting worse. More fatigue, more nausea, more suck.

My first week brought such intense nausea I had to increase the dosage of my medical marijuana 2 fold in addition to staying on top of the anti-nausea medications. Even that didn’t relieve everything in the way it used to.

Leading into my 2nd infusion, I started getting fevers a couple days before. As discussed with my oncologist, I tried to manage the fever with Tylenol. I was able to get the fever down each day, but come morning, a 103 degree temp greeted me. The infusion center still gave me my chemo, and I went home and promptly fell asleep and woke up feeling like utter shit. UGH.

Saturday, May 27th we had tickets to see Jake Shimabukaro (seriously, click the link and be blown away). Though I wasn’t feeling super, we made it happen. And then there was the encore. And the 2nd encore. Never have I wanted less for more music. When the 2nd encore began, I wanted to cry.

On our way home, I knew my fever was back. But I was resistant toward going to the emergency room. A text to my friend and former oncologist, Katharine Tierney, confirmed I needed to go in.

Fuck.

We went home first. I ate something, took my evening medications, and we packed a bag knowing we would likely be admitted. The ER was popping on Saturday night at 11pm, so I had to sit and wait with a mask on. I was half tempted to ask people what they were in there for so I knew who to avoid sitting near. Not exactly appropriate.

Eventually, we got into a room at the ER and they sent me up to the hospital for longer term observation. This does not count as being “admitted” but “observed” (Kaiser considers this to be different, and lucky for us, observed is a flat rate, no matter how long we stay).

And so here I sit, still in the hospital, likely through early next week. My fevers kept spiking each day (105! New record!) and would not go away. My platelet count was all over the board, but super low; red blood cells low; white blood cells low. I actually can’t leave my room for fear of infection. When I’m up walking, I’m confined to the room dimensions, and basically look like a crazy person who doesn’t know where they’re going or what they are doing.

They’ve got me on two different antibiotics; I’ve been getting platelet and blood transfusions. And we’re just waiting for the fevers to go away.

Here’s to hoping…