Words I Wasn’t Really Expecting to Say Yet

Cancer does not want me to do the things I’m most wanting to do. For example, my studsband, Mac, and I have been working to celebrate our three-year wedding anniversary at our favorite local getaway. So, of course when it comes time to wake up and leave for our trip, I have a low-grade fever and generally feel terrible. So I spent the next week in the hospital.

Somewhere early on in my stay at the hospital, a random neurosurgeon took it upon himself to tell me, unbidden, at 2 am, while I was asleep, what my prognosis was. I’ll get to that more in a moment, but I had a couple days there where I felt my autonomy was being taken away from me with no thought as to what was important to me.

Which is to say, I do have news.

In my last blog post, I talked about the 4 broken bones in my back, and my sudden loss of leg mobility. What I’ve since learned is that the cancer in my spine has progressed; it’s putting pressure on my spinal cord and is causing progressive weakness and increasing severe nerve pain—the worst pain I’ve ever experienced.

I sat down with my amazing oncologist and received the news from her that the risks of all possible treatments outweigh the benefits.

Based on clinical suspicion, my oncologist believes me to have not days or weeks to live, but something more on the order of one to three months.

As a result of this information, I’ve made a decision—supported by my family—to be discharged from the hospital into a home hospice program.

I don’t want to spend this time in the hospital; I want to spend this time at home with Mac and my community. I want to have the opportunity to let my people know how important they are to me. Though the circumstances really are shitty, I feel blessed to have this opportunity.

Now that I’m home, though, I’m learning that this isn’t as easy as I thought it would be. I can’t just plop myself back into my wheelchair and roll myself down the block. I’m in bed a lot. Yesterday was the first time I was out of bed. I sat in the wheelchair for a few hours before sitting in my recliner for a while. Then in the process of getting back into bed, I experienced such excruciating pain. Pain repeated today as we tried to get me back into the recliner.

Which is to say, this shit is hard. I’m lucky to have found my soul mate. Someone who tells me I’m not a burden even though I’m so clearly a burden.

One step at a time,
Alana

Breathing, and radiation, and ice cream, oh my!

Here’s the thing about cancer. It’s unrelenting. It’s the type of thing that simply stays on your mind all the time, even when what you’re trying to do is think about only the good things in the world. Which means I spend a lot of time trying to create space in my brain for thinking about anything but that word “cancer.”

Sometimes that looks like making my first film (!!!) and having it screen in San Francisco; Los Angeles; New York; Portland, Oregon; and Gary, Indiana.

Sometimes it looks like watching way too many movies starring The Rock. (Did you know you can get the Icee of your dreams at the Emeryville AMC?)

Other times it looks like spending as much time as possible with Mac, making chit chat, eating ice cream, reading Harry Potter.

It can also look like playing Heads Up with whichever friends we’re lucky to be hanging out with.

All of these ways of taking breaks from the constant heaviness of cancer are becoming more and more important as Mac and I enter a new phase of cancer treatments. A phase where my health remains and becomes more and more precarious.

Eighteen months ago, it seemed like I had countless treatment options ahead of me; that number now is disappointingly finite. Eighteen months ago, I was walking three miles around Lake Merritt every day; yesterday I needed a wheelchair to get from the living room to the bathroom—an unexpected, and hopefully reversible change.

I had a period of time this summer where the combination of my uncontrolled pain (did I mention I have four fractures in my back?) and my difficulty breathing (did I mention I have lung metastases?) made it impossible for me to lay on my back long enough to receive the scans I need to see if the chemo I’m on is working.

Last Friday, after a few sessions with my physical and occupational therapists where I practiced breathing while laying flat on my back, I was able to lay for CT scans of my brain, chest, abdomen, and pelvis!

And … the results were … mixed.

The brain scan showed “innumerable” lesions throughout the brain. The best course of treatment for this is whole brain radiation, which is exactly as upsetting as it sounds.

The other scan results showed that my systemic disease is fairly stable, with some growth in my liver and ribs. Which is to say that the current chemo is working a little, but isn’t effective enough to stick with it.

So that’s where we are. I’ve decided to move forward with the whole brain radiation, which will start this afternoon. The full course of treatment will be five days, each day approximately ten minutes each. During the five sessions, they’ll also radiate the met in my right iris and the met in my left hip flexor.

Side effects of the radiation will include deep fatigue, permanent hair loss, skin irritation, and short-term memory loss. My big projects will be to manage my ability to breathe during the unforgiving circumstances of the radiation sessions, and then to bounce back enough that I can return to chemo (or immunotherapy) as soon as possible.

Thank you for reading this missive. I hope it helps you feel up to speed on where things are with Mac and me.

The love and support we receive from #TeamMittsAndMuffy is truly humbling. Thank you so much for reminding me that magic is real.

Of course, while I’m at it, I’d like to include a link to our fundraiser. Please help and/or share:

https://www.gofundme.com/2h4j2wxc

With love, solidarity, and ice cream,

Alana

Crushing it a little bit

Last chemo cycle was my best one yet. The first week wasn’t spent at the bottom of the pit of inconsolable despair and hopelessness; mostly I just floated around at the top of said pit, which is much more tolerable. My love and I made an extra effort to keep me active this time around: more walks, seeing live music, connecting with friends. It seemed to really help.

The main physical side effect of this chemo cocktail is fatigue. And while the fatigue is extreme enough that I could justify staying in bed all day, the only thing that really has an impact on chemo fatigue is physical activity. So I’m working on that.

I’m struck by the difference between what I can do in my first week of my chemo cycle versus the second. During my first week, I walked three blocks to a restaurant, sat for an hour to eat, walked back home and needed to nap for two hours. The next week, I walked to a restaurant more than a mile away, with no nap needed when I got home.

During my first week, my physical therapist noted that my gait had really declined—I was high-knee walking because my lower legs felt extra heavy. The next week, I aced my physical therapy progress tests and managed to take my first shower standing up, without a bench.

I struggle to not judge myself during week one, to accept my limitations as part of the new rythym of my life. To remember how good week two is. It’s a practice. It’s definitely easier said than done. Especially when I sit back and realize that, best-case scenario, this will be the cadence for a long time coming.

My oncologist is loathe to give me another “chemo holiday” since my last one ended with a hemorrhaging brain tumor and metastasis to my lungs and bones. So this every-two-week chemo cycle will continue until the chemo stops working, or I can’t tolerate the toxicity.

I’ll be honest, despite my gratitude for treatment that is keeping me alive, I resent my situation. Despite my happiness for people with earlier-stage cancers finishing their treatments and being declared “cancer free”—and believe me, I am overjoyed every time—I can’t help but feel a pang, that my port will never be removed, that I’ll be getting brain MRIs and full-body CT scans every other month for forever, that I may be on chemo for the rest of my life.

But, who really knows the future, right? Last time I saw my oncologist, she mentioned I might be eligible for immunotherapy. Last time I made pancakes from a mix I messed it up and became convinced that it meant something, that maybe my itty bitty brain tumors are waking up. Last time I was on chemo I couldn’t touch things in the refrigerator because of cold sensitivity. This time ice cream is consumed almost daily, as it should be.

“I go on and on and on and on.”–Erykah Badu

The thing about my left thumb

There’s a lot about chemo that’s obvious: It’s hard. There will be nausea. Your hair might fall out.

But there are all these little things that they don’t really warn you about, no matter how long a list of side effects and treatments they may give you.

For example, nail shape changes. Last time I was on chemo, I thought I was losing my mind a little bit because the nails of my big toes were becoming ingrown and it just seemed so weird. They didn’t quite look right. But then again, I don’t spend a ton of time staring at my feet.

But this time on chemo, my fingernails are completely changed. Apparently this is a thing. I don’t like it.

Looking at my hands has become a constant reminder that my life will never be the same again. Like I needed that nudge. Maybe I’ll be on chemo for the rest of my life. Maybe my left thumbnail will always look like a stranger’s oddly rectangular nail. It certainly doesn’t look like it belongs on my hand.

The nurse practitioner in the infusion center tells me that people tolerate my current chemo cocktail better than my last one. With the last chemo, they push to get people to twelve treatments. With this one, I guess one could go on indefinitely.

This doesn’t make me feel better. I think it’s supposed to.

Other things that don’t make me feel better: Setting intentions for 2018. Being told how to feel. Anything posted to NextDoor.

Things that do make me feel better, if only sometimes: Ice cream. My beloved reading to me at night. Meditating. Connecting with friends.

Don’t mind me, I’m just meditating

I’m not super big on New Year’s Resolutions. I usually come up with three very achievable goals, and the third one has remained constant for the past 20 years, at least: Don’t suffer fools gladly. No. 3 has served me well.

This year, on top of my “resolutions,” I also decided to do more meditating. I’ve been practicing once or twice a day since January 2. (I slept through the entirety of January 1 because chemo and a head cold.)

I’ve been doing a lot of guided meditations, which is a new practice for me. I mostly appreciate guided metta, or lovingkindness. My favorite one right now is this guided metta from a workshop by Arinna Weisman on living with chronic illness or pain. I also appreciate this one from Tara Brach, on opening and calming. I’d love to hear what meditations work for you.

One of the things I’m appreciating about my new meditation practice is that it makes me feel like there’s room for more than despair, hopelessness, discomfort. It expands my perspective, even for a short while. I’ll take a short respite from suffering over no respite.

I signed up for a couple of one-on-one meditation sessions with a teacher I trust. In our first meeting, I told her about all the things that make me cry about chemo. For example, running into someone at the infusion center whom I haven’t seen in over a year, and who frankly isn’t looking her best, though her spirits seem bright as ever. Or watching the woman in the chair across from me finish her chemo, pick up her things and tell the nurse that now she’s going to the hospital to sit with her husband who is currently on a 24/7 chemo infusion. Oh, and did I mention that her adult son, who was sitting with her, had just finished his own chemo treatments?

My teacher offered that what might be happening is I’m minding my own business, putting one foot in front of the other, managing this beast one day at a time, and then I end up in a place where I see a little sliver of someone else’s struggle and it triggers my own fear response.

Yeah.

Sometimes I notice people looking at me with what feels like pity. I imagine that perhaps it sometimes is the case. Mac tells me it’s not so much pity as it probably is sadness and fear plus unfamiliarity and distance. That sounds about right.

I’m doing fine-ish. This shit is terrible, but I’m okay-ish right now. I even just made it through an entire three-day chemo infusion with only one fit of tears. I’m keeping it moving, one clumsy, resilient step at a time.

That’s life, I guess.

 

On hair loss and service dogs

I had a few days in a row without tears. Up to, and including, my second round of chemo. Then my hair fell out on Friday. Well, to be honest, first a handful of my pubes came out. Then I reached up to do my hair and it started coming out. Handful after handful after handful. Until the sink was overfilled with my hair. Why does cancer have to be so damn dramatic?

At first I was fine. Mac and I went to the wig store and picked out a couple of wigs. Malachi came over with clippers to shave the rest of my head. Belinda came over and gave me a headwrap refresher and she and Erin helped me pick out two wigs that were a little less crazy than the ones Mac and I had chosen.

My head looks gnarly. I have a few swaths that are still completely smooth from the cell death hair loss following brain radiation. Then the rest of my head is more stubbly. And, of course, there’s a huge scar taking up a good amount of real estate.

It feels stupid to say it, but the level of anxiety I have about the possibility of my eyebrows falling out is through the roof. It’ll probably happen. So there’s that.

Everything feels extra fraught right now. Like I’m convinced I’m going to die next week. Mac helps keeps me grounded in the present. He reminds me of a more full truth of each moment.

A truth is that today during physical therapy I got to lay on a mat and get stretched out while also looking over at a smiling Mac and a sleeping support dog. There’s nothing wrong with that.

Another truth is that I can’t feel my left leg in space. So every 30 seconds on the exercise bike I would notice that my foot wasn’t even on the pedal anymore. But each time, I lifted it back up and placed it back where it belonged.

Another truth is that 3 months ago I was in a hospital bed with a hemorrhaged brain tumor and the best option for going to the bathroom was simply to pee on myself and then call the nurse to change my pee pads. Today, I am walking around without even a cane (most days). Even on the worst days of chemo, I can get myself right to the bathroom on time and on my own.

I guess that’s to say I’m trying to widen my view a bit. And take more control of the narrative. It’s been a lot worse. It’s going to get worse again. Today, though? I guess it’s just fine.

All the tears

I cry a lot lately. Silent tears. Ugly tears. Loud, heaving sobs that make my body ache. Tears of the fear of dying. Tears of the injustice that this disease is going to take me from the love of my life. Tears of discomfort. Tears of my deep hatred of chemotherapy. Tears of gratitude that there are still treatment options for me.

I cry because I resent that every moment of this diagnosis has been entangled with the evil of Donald Trump. I cry because it’s unlikely I’ll outlive his presidency. I cry because given half a chance I would hand this diagnosis right over to him. I cry because fuck him.

I cry because three days into my new chemo treatment, my anxiety levels were already as high as they were when I was at peak toxicity before. I cry because I had just let myself restart my wine club membership. I was so excited to drink so much wine again.

I cry because I feel alone. I cry because I feel so held. I cry because every now and then I get a glimpse of how many people are rooting for me, praying for me, holding me up. I cry because the other day I was walking down the street and a man I’ve never met told me he was following my journey and wished me the best.

I cried the whole ride to my support group yesterday, and through the whole breathing exercise, and after I cried through my whole check-in, those amazing people affirmed my experience, reminded me how terrible chemo is, how mood-altering pain is, how sometimes the only thing you can do is cry.

Then I promptly got back into the car with my baby and started crying again.

November is hard

This time last year, I got my cancer diagnosis after a couple months of increasing, constant nausea and constipation. I was having such a hard time eating and drinking that I was admitted to the hospital so they could hydrate me. (Probably for other reasons, too, it’s all a blur of feeling crappy and Donald Trump being “elected.”)

Fast forward to this year and I’m looking at a stable brain MRI, but progressing tumor activity in my liver, lungs, lymph nodes, and bones. My (wonderful) oncologist looked at me with reddened eyes as she said “for you to be here for another year, we need two big wins: no progression of the cancer in the brain and for the chemo to work”.

Oh, did I mention that I’m starting chemo again? Next Monday, to be precise. It’s a slightly different drug cocktail this time, with slightly different side effects.

On the bright side:

  • Aside from a couple spots of pain, I’m basically asymptomatic right now.
  • I get to go to my family’s Thanksgiving dinner this year. I’m going to eat so much food.
  • I get to spend the long weekend in L.A. with friends.
  • Even though the months of September and October were entirely too eventful, I’ve had a six-month break from chemo, which means I’ve had plenty of ice cream, sat in plenty of hot tubs, and consumed so many delicious cocktails.
  • I know not to take compazine this time around, which will hopefully remove the catatonic zombie feeling I had during chemo last time.
  • I’m better at resting. I know not to try to do all the laundry the day after my chemo infusion. I will not hesitate to nap the shit out of my days if that’s what my body wants.

I’m cautiously optimistic. I’m grateful. I’m cranky. I’m scared. I’m all the things.

Maybe I am a superhero

I know. It’s been a while. What have I been doing? Well…I went to Hawaii for my second wedding anniversary. Then, while I was there I had, you know, a brain hemorrhage. From the 4-centimeter brain tumor that had been steadily growing for who knows how long. So I ended up spending the rest of September in four hospitals, on two medevac flights, getting “awake” brain surgery, and relearning how to walk and use the left side of my body.

ambulance ridelearning to use a walker

 

 

 

 

 

 

And then I came home. I got some radiation to my brain cavity, plus two other brain lesions, plus to the lesion they randomly found on my sacrum. I did a lot of physical and occupational therapy. I graduated from a walker to a cane to no walking aid. I lost huge clumps of my hair. I went from taking 30 minutes to walk down the block to walking two miles in an hour.

I also had a couple of game nights. And went to see the Bad Plus in San Francisco. And sat in a hot tub with Mac. And started watching Sense8. And took a break from watching Sense8 to watch Stranger Things 2. I slept a lot. And I made plans to see family and friends in Southern California. I snuggled with my love. I ate so much ice cream.

I’ve learned a lot over the last two months. I was reminded, yet again, of how amazing my support network is. I learned even more about what a fabulous advocate and partner my love is. And I discovered, for the first time, that I really am resilient as fuck.

Joyful things, big and small

It’s been easier to find joy these days. It helps to have three-week stretches of time in between visits to the infusion center. And to be off the dreaded, zombiness-inducing compazine.

Mac and I have been trying to have a “summer of fun” and I’d say we’re achieving our goal. I’ve been tagging along on some of Mac’s work trips, and we’ve been scheduling long weekends to see our friends. There’s nothing Mac loves more than getting in the water, so we’ve been trying to make that happen as well.

All of this has gotten me thinking about delight — ostensibly the reason I started this blog to begin with. Despite enjoying myself more than I have since my diagnosis, I can’t say I’ve found much to delight in. Walking through museums in D.C. was actually the most alive I’ve felt in months. But it felt like a melancholy contentment. Enriching, but not delightful.

Friends point out delights to me — the amazing marquee for the Grand Lake Theater, cherry blossoms dancing in the wind, a tree stump that looks like a person’s face — and I love it, but I’m not noticing these things on my own.

Back when I was on aggressive chemo, I noticed that I had tunnel vision. On a drive to Sonoma, from the passenger seat, all I could see was the road ahead of me, and the navigation app on my phone. About halfway there, I turned my head to the right and the view was absolutely stunning. Clearly it had been for some time. I just couldn’t see it.

And that’s what life felt like in the aftermath of diagnosis, and in the midst of chemo toxicity. Managing anxiety and disbelief. Putting one foot in front of the other. I developed an armor to protect me from the world, which seemed scarier than ever. The armor helps, but it came with unintended consequences, like not being able to see the big beauty or the tiny delights.

Now that I’m several weeks into maintenance chemo, and therefore several weeks away from the extreme anxiety created by chemo toxicity, I’ve found that my peripheral vision has widened. I’m able to see beauty in what’s around me again. It’s such a relief.

But what I’m not yet able to see are the little things that once brought me delight. Still, I’ll take it. It’s good to have some enjoyment and contentment back. Maybe delight is on its way. Maybe it’s a muscle I need to relocate and exercise.