The hitchhiker’s guide

#royalwedding

When I was a kid, I would often almost get what I wanted for Christmas. You know, if I asked for Barbie, I got “Darcy”. Or if a Monchichi, I’d get some other simian derivation. So when I heard that when we went on a family trip to Taiwan that my uncle was going to get one of the cousins a Cabbage Patch doll, I was beyond thrilled.

On the much-anticipated doll-distributing day, true to my life story, I arrived to find that instead of said Cabbage Patch dolls we were each given a life-sized, realistic Prince William doll. Luckily for us Prince William was a newborn (an adult-sized Prince William doll would have been infinitely more disturbing). I soldiered on cheerfully carrying my infant Prince William doll with me everywhere I went, until his blinking eyes were no longer in synch and, one-eyed, would stare at me whenever I entered my room, contributing significantly to my lifelong battle with insomnia. (I know my audience — please do not suddenly flood my mailbox with Cabbage Patch kids 🙂 ). 

All this to say that I can’t believe his little brother just got married.

In 1981, I woke my brother at the crack of dawn and we ventured into the basement to watch coverage of the wedding of Charles and Diana. In 2018, I didn’t do that (but one of my kids did). Instead, I scrubbed through video footage afterwards pretending to be a royal wedding guest while in actuality wearing my “I only like NY as a friend” t-shirt, and cried (probably poisonous chemo tears) every time Harry cried or was about to cry. Sometimes, you just need a good love story with pretty dresses, inventive headwear and flowers to keep you going.

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For the past few weeks, I hadn’t felt like writing about cancer. So I’ve been doing other things, like watching the royal wedding, celebrating our own 17th wedding anniversary, running errands when I could, and work got really busy — it was nice to do normal people things for a while.

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17 years ago, at another wedding when an American married a Brit. The American is basically on stilts.

 

Bleh

That’s what I’ve been telling people how I’m feeling since I got my fourth infusion. It has definitely gotten harder with each one — more symptoms, and even the infusions themselves are a little harder to stomach — but I think of all the little kids with cancer who just go in and get the job done — and they push me along. I can taste and smell the drugs as they go in, and it stays with me for a week, seeping out of my pores and my very being. With the loss of every eyelash I feel a bit of my humanity is pecked away, and some days, it’s hard to remember that I had a life outside of chemo. Such is the price of shrinking a tumor.

I am getting better at it. This time I brought a cold compress and held onto it when the dacarbazine went in. I’d hypothesized that the stabbing pains I got afterward were due to the drugs circulating into my hands…and the cold compress experiment worked. No stabbing pains this time! Sucking on ice chips during the Red Devil infusion seems to prevent getting mouth sores. And I eat lots of probiotic yogurt during the first week, which seems to help with the digestive tract issues.

As my friend Alison, who was captain of the first American’ women’s Everest expedition, posts about her climbing experience: “I would love to be one of those people who could say that the climb ‘wasn’t that hard for me’ and that ‘I felt strong the entire time’ and that ‘I knew I would make it.’ But I doubted myself constantly, was never very fast and was never very strong. But here’s the thing you guys: You don’t have to be the best, fastest, strongest climber to get to the top of that mountain. You just have to be absolutely relentless about putting one foot in front of the other.”

That pretty much sums it up. Next scan: June 11.

Q&A

Some people tell me that they don’t know what to say to me, or do to support me. I get it. I wouldn’t know either. And it’s so personal — I read about folks who give advice like “just show up!” and that would actually be my own personal nightmare — please do not just show up. I want to have eyebrows on when you get here. A friend suggested it would be helpful for me to share some information on what would be helpful. Feel free to comment with any other questions too.

What do you wish I knew?

This is a really strange time for me — a time where I am uncomfortably amassing a huge social debt that I know I can ever repay. I want you to know that in whatever way you are dealing with my diagnosis, I appreciate it. The depth of my gratitude is in no way reflected in the length of my response or the frequency of my contact. Know that I receive and value your messages even if I don’t respond right away. Give me a pass if it slips my mind and I don’t respond at all. And if your way of dealing with my diagnosis is that you just can’t engage right now, that’s ok too.

Best thing to do is to have low expectations of me. I might cancel plans if I’m feeling crappy. I might not respond if I’m too exhausted. I’m basically going to be the worst friend ever while I’m going through this.

What’s the best way to contact you?

Short form communication is great. If you write a comment on my blog, I see it and know you’re thinking of me — and that gives me great encouragement without requiring a lot of energy on my part (when I “like” your comment, I really mean it!). Texts are good, but know that sometime I fall behind on them, so please don’t be offended if I don’t respond right away. Emails work, but again, it can take me longer to get through all of them and to respond.

Phone is the mode that requires the most energy from me. I’m not opposed to talking on the phone, but it is definitely the most taxing of the modes of communication…and I need to be in the right mindset to be able to do it. But know that I listen to your voicemails!

Basically, reach out any way that you’d like, but if you can be generous about allowing me time to respond, that gives me time to rest and recover.

What do you want to talk / hear / read about?

I get out so little nowadays that I want to engage with anything that helps me feel like I’m still a part of the world. I want to hear about your everyday life. I want to know what delicious new thing you found at the grocery store, or the best new comfy pants you’ve found on the market. I want to see the details of Meghan Markle’s dress and flowers, or know what people with hair are doing with it nowadays.

I want to look at beautiful things. I want to hear about astonishing developments in technology. I want to see the worst memes on the internet. I want to laugh.

I’m not clamoring to snuggle up with books about death, or mortality, or suffering. I don’t want to talk about cancer all the time, or even talk about me all the time. I’m not ready to hear about your courageous friend or relative who lost their battle with cancer.

Can I visit you?

Yes, but see above. I may not have the energy to be engaged for very long. Here’s a proposal that some lovely friends put together that’s perfect in so many ways:

[Friend] and I have decided to meet up for the day in San Diego because someone we love and adore lives there and we just wanted to be in the same zip code as her even if we can’t see her. We are totally happy to spend a day with just the two of us in San Diego shopping, eating, talking, etc. If we are lucky enough to catch said loved and adored person on a good day we would be made even happier by as much of her presence as we can get. We will take her anywhere she wants (or has) to go, bring her anything she wants to eat/drink, stay for only as long as she wants whether that’s 60 seconds or 60 minutes. But seeing her is not expected, just an added treat. Think of it as flying to LA to see Beyoncé’s house  – the purpose of the journey is to worship Beyoncé via proximity. Actually seeing her walk out of the mansion to yell at the gardener would just be a bonus.
Your end of the bargain is that when you get a text from us saying we’re in town and you don’t feel up to company you reply “purple pineapple”.  That’s also the code phrase if we do see you and you start feeling tired & want to be alone. 
Depending on the day in the cycle, I can also have low immunity levels, so if I don’t give you a hug, please don’t be offended — I’m just trying to stay out of the hospital. Short walks with me are often good ways to visit since being outdoors reduces the risk of exposure, and I like to get a bit of exercise in when I can.
Because my energy levels are low, smaller groups are better, and for short amounts of time. Of course if you’re coming in from out of town I will do everything I can to make a worthwhile visit happen — but just wanted to share all the caveats.

The bright side

Benjamin Franklin

I’m about to post some pictures, and I must divulge that most of them involved drag queen levels of makeup. Most days I look like crap, and I don’t have the energy to put in the effort to either put mascara on my two remaining eyelashes, or put fake ones on.

These arrived on my doorstep a couple of weeks ago:

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I don’t know what it says about me, but I feel most like myself in the blue and pink wigs — more so than in wigs that are supposed to look like real hair. I wore the blue one for a work videoconference, which amused me (and only me) greatly.

One of the moms on our volleyball team is a photographer and kindly offered to come take some family pictures for us. This is great because just recently one of the kids asked me to send her pictures of the two of us together, and I realized that there really aren’t that many — because I’m usually the person behind the camera. For that photo shoot I decided it would be fun to have hair, and eyelashes, and even though by the end of the shoot my fake eyelashes were falling off and part of my eyebrow was erased, it felt good to look like a normal person again. But the blonde wig is really hot and sticks to my face, so not really practical for me on a daily basis.a81u0125

Which brings me to this: there are a category of wigs called halo wigs, which have hair just along the sides — like so:

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I have one of these wigs which we dubbed the “Benjamin Franklin” — and obviously, you have to wear a scarf or hat on top for it to look like you have a full head of hair.

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I am wearing about 10 pounds of makeup in this picture and the fake eyelashes are hanging on by a thread.

I have this fantasy that I’m going to wear the Benjamin Franklin the next time I fly, and when I go through security TSA will invariably ask me to remove my hat or scarf, at which point I’ll just have to say, “Well, okay…!”

Actually I don’t even have to wait for that. I wore this wig for a couple of hours when we went out to breakfast one day, and put a straw hat over the scarf to keep the sun off my face. When I got in the car, I took the hat off, and didn’t even notice that the scarf came off too. For about 30 minutes, a small but fortunate sliver of the San Diego population got a rare glimpse of an Asian-American Benjamin Franklin on the 5 freeway.

Enjoy the little things.

 

 

 

 

Net neutrality

Would you rather

In high school, I went to a magnet school. This involved taking a bus from my neighborhood to the local high school, and then waiting for another bus to take me to my actual school, which was another 45 minutes away. This was before smart phones and tablets and just shortly after the printing press (or at least the Walkman) was invented, so my classmates and I had to use our actual brains and mouths to provide entertainment. One of these ways was to play “would you rather”.

Would you rather eat a bunch of hair pulled out of a bathtub drain, or would you rather burp every time you spoke? That’s what cancer treatment is like: trading off one not-so-great thing for another.

I’ve noticed that I’ve become oddly possessive of things I once took for granted. My fingernails are turning purple, and sometimes they hurt. I know that other patients on the patient discussion boards I’m on have lost their nails, and I’ve realized that I’m rather partial to having fingernails. I find myself playing “would you rather” on my own nowadays: would I rather have fingernails, or let a tumor eat my insides? Turns out it’s a lot less fun of a game when they’re real choices.

Scanxiety

I didn’t post last week because it would have been about my scanxiety – which what on the patient boards is used to describe the anxiety one feels while waiting for scans and results – and there was no point in spreading it unnecessarily. Some of the people on the boards have PTSD from the scanxiety: since leiomyosarcomas have a high rate of recurrence, some of them – the luckier ones, in a sense – have weathered 16 years of scans, 7-8 surgeries, radiation, worked through all the sarcoma chemo regimens, and they’re still going. But understandably, they’re traumatized by the prospect of a scan and which body parts they’ll be losing next.

Yesterday I had my first scan since I started chemo, to see whether it was working. This trip was tightly booked, since we flew in the night before, and I had back-to-back appointments all day with blood work, the scan, a consult, and then an appointment to get my port approved for use at MD Anderson since they hadn’t installed it (important since some of my veins are kind of giving up, and my arms are both sore and bruised from unsuccessful vein entries).

The Godfather came in and started off with one of his signature healing hugs. He thinks white lab coats are boring, so he covers his in buttons and pins (or if he worked at Bennigan’s, “flair”), so when he gives you a hug, he stabs you with all those pins, which I view as a sort of acupuncture.

Is the chemo working? We can’t say for sure. On the one hand, there is a hole in the middle of the tumor, where some necrosis (tissue death) has occurred. On the other hand, the tumor has increased in overall size. However, it does seem that the hole is growing faster than the tumor is growing overall – so that is a positive sign. Since there aren’t that many options for LMS treatment – four, really – the Godfather said that he wouldn’t want to rule (the most aggressive) one out without proving out definitively that it didn’t work. So, we’ll proceed with two more rounds of it, do another scan, and then assess.

I had a bunch of questions about the path forward (what if this, what if that), and the general response is that we need to evaluate as we go. It could involve other treatments; it could involve radiation, and it will hopefully involve surgery, which is the best way to try to eradicate the cancer.

So overall, I guess it’s neutral-to-goodish news. It might be working. Back at it tomorrow with another infusion.

What if

Even worse than the scanxiety is the trap of falling into the what-if game. No good comes of me thinking too far ahead.

I stay on the patient boards because there’s good information shared on them – and because of the rarity of the cancer and commingling of disease types in research, none of the studies are really conclusive in helping me make treatment decisions. So I like to collect anecdotal evidence to draw my own conclusions. There have been a few patient-led efforts to try to create a database of treatments and outcomes, but they’ve been hindered thus far by privacy concerns (and the multivariate analysis that would need to be done would be pretty daunting given all the universe of beginning, middle and end states).

Sometimes there’s encouragement on these boards too. But too often, members die. Sometimes, the spouses post about the deaths. These posts are raw and painful, and the ones with pictures and families crush me. This one undid me for days. When it’s someone around my age, with kids, with a life that somewhat resembles mine, it’s so hard, because — what if?

I’m devoting just as much energy to the mental game as the physical. Mindfulness, meditation, prayer…exercise, sleeping, eating…those remain my primary spheres of energy investment. I’m still an optimist, but it does take work.

The bright side

Bonding

Last weekend, Sacha took one of the kids to Vegas for a volleyball tournament, and the other girl and I had been getting on each others’ nerves – which was not how I wanted our relationship to go down. So I told her I was going to force her to bond with me that weekend. We rented a movie, made pizzas, and Saturday night, when no one was at the mall and it was safe for my low-immune-self to be out, we went shopping.

Since it was a cooler evening, and a special occasion (mall! public!) I put on my Chloe Kim wig. We had only been at the mall for a few minutes when a woman ran up to me and said that she loved my hair color and begged me for the name of my colorist. I had to laugh and confess that it was a wig, but…kudos to the colorist at Rene of Paris wigs!

Sunday was kind of a bummer since we had planned to do some more hanging out (forced bonding works!), but the oncologist on call asked me to go into the ER for an infection (everything is ok and I have a follow up appointment today where I hope they’re going to tell me the same). Luckily when you’re a cancer patient they get you into a private room pretty quickly, so I was able to be out of there within three hours and we still had a little time to spend together – enough to make a nice dinner.

Security

A huge blessing was being able to go on this trip without having to worry about how the kids were doing. We weren’t at all worried about welfare since they were being cared for by our dear friend and her boyfriend, who happens to be an FBI agent. I’m confident there’s a major market expansion opportunity for the FBI in the arena of childcare. The girls told us they were “having a great time with their foster parents” and that we were free to “take another vacation day” if wanted to. (Note: seek out vacations that don’t involve blood or needles.)

Home at last

After 21 days in the hospital, my mom is finally home and recovering nicely. Two aunts and an uncle are on hand to help out, and I was able to see her on her birthday! Just the other day she got the ok to finally take a real shower, about which she was overjoyed.

And finally

I’ve discovered that if you’re ever feeling down, there’s nothing that The Fitness Marshall can’t fix. Just please don’t imagine a bald, middle-aged woman in pajamas trying to keep up.

One bald step for mankind

The sharing

Some of you have asked whether you can share this blog with others. Others of you went ahead and shared. Please feel free to do so without asking — I would be delighted if it would be helpful to others, and as I mentioned before, because this is a rare cancer I’ve decided to be very public with it, which has been helpful to me in getting to the right specialists.

And side note: I mentioned that I get chemo brain after my infusions, and my portable infuser just finished piping some drugs into me a few minutes ago, so please know that we are heading into the dumb days again and forgive any typos, errors, conspiracy theories, etc.

The shearing

You could probably tell from my last post that I was ready to get rid of the pixie.

My hair started coming out in clumps in the shower. At first it was a like a little game — I would run my fingers through my hair and see how much hair come out with each round. But there was always more hair, and I could have stayed in the shower for hours, so I got out and then as an experiment, blow-dried it — dandelion fuzz everywhere. I knew it was time.

I ate a last snack with hair — these beet puffs are really good if you’re looking for something crunchy — and then headed up for the shearing.

I had a debate as to how to approach it — do I make it public, and invite friends? Or do I keep it private? I decided on the latter. I wasn’t sure how it would go, or if I would (as I deeply suspected) have a deformed head, and as it turned out, it felt like an intensely personal experience.

I thought I was ready. But when we started shaving it, I got really sad. Not because of the hair — I was really ready to let that go — but because of everything else: that my husband had to shave his wife’s head (though he is uniquely qualified in that regard); that I would now for sure look like a cancer patient — sick, vulnerable and exposed; that my kids would be embarrassed to have me around their friends (then again, they’re teenaged girls so that could equally happen with hair). I thought of our wedding vows — all that in sickness and health stuff — but I always assumed it would be more like, you know, the flu.

I was pretty upset about the shearing all night. But the next day, I got up, put in contacts, brought out my arsenal of makeup, and took a good look in the mirror. I’m happy to report that my head is in actuality not deformed. And you know what? I think I actually look better with my head shaved than with a pixie, and I feel kind of fierce!

I answer the door all the time now with my shaved head. A sweet friend sent me a collection of her grandmother’s scarves, so I’ve been having fun with those too, and with my killer collection of hats from friends around the country. Balds have more fun! (That thing on my neck is the tube of my chemo port, in case you’re wondering.)

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Cycle 2

I had my second infusion yesterday, and it was rougher than the first — to be expected. The infusion process itself was kind of fun since I had two of my guardian angel friends visiting (which is more than recommended, but it wasn’t that crowded that day at the center and we had a nice time!), but once I left, I started getting stabbing pains in my hands, as if someone where knifing me repeatedly. I went back inside to talk to the team and they told me to monitor. Afterwards, I noticed that my palms were covered in dark purple capillaries — just like in the movies where some guy ingests a magic potion and turns into either a superhero or a monster. I’m hoping for superhero.

I’m definitely more tired this time around, slept most of today, and didn’t feel so great last night. But two infusions done!

Mama mia

My mom is still in the hospital with a lung that leaks. As I write the doctors are conferring about what to do. More surgery? Other options? She’s been in the hospital now for two weeks, so if you’re the praying type, please keep her in your prayers.

Her pathology also came back as a Stage 2, so once she’s released from the hospital, we’ll get some opinions on any follow-on therapies that might be recommended. But for now, I’d love for her to be able to recover and to go home, where I think recovery happens best.

The bright side

On Sunday, we made a pit stop and dropped our knives off at a farmer’s market, where there is a Japanese guy who is the only one to whom I trust my Japanese knives (and is also a small enough market there weren’t too many people around, so I was able to take a quick wander). As we arrived, a woman handed me a sunflower bouquet. The sunflower is the official sarcoma flower. Of all the bouquets she had, she handed me this one!

I was also able to pick up a few fresh flowers, since this is an ok-for-flowers week, and I got some sweet peas and ranunculus which I love.

Earlier in the week, I dropped my car off for its 45K mile service. And guess what — it was right at 45,000 miles as I pulled into the service area! I was pretty proud of that, though no one else seemed quite as impressed.

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May unexpected coincidences bring brightness to your day.

The wilderness

The hair

Cut your hair into a pixie, they said. You’ll be so glad it’s short when it starts to fall out.

I was told to expect to shave my head by week 2. Not one to deprive the kids of the opportunity to have two bald parents, I was ready.

Friends, my hair is glued to my head. It is falling out less than ever before. It is also growing — into a Wayne’s World style mullet. I am wondering if I am going to be the first person ever to keep their hair on this regimen, at which point I will be doing two of the hardest things in the world at the same time: undergoing chemotherapy, and growing out a pixie.

I had an appointment this week with my oncologist here in San Diego, and she assured me that my hair would fall out. I realize I am probably the only person to ever wish for this to happen, but this haircut was part of that plan. Time will tell.

And to add insult to injury, I was reading that the steroids in the regimen cause some side effects too. While I have not developed an incredible amount of muscle mass, it has caused my skin to break out. Mullet + glasses + acne — I know you’re all jealous.

Mi madre

My mom is still in the hospital. We thought she’d be out by Monday, but it looks like the lung isn’t inflating fast enough — and that there might be some air bubbles that still need to be worked out. It’s been a full week now and she’s eager to go home — and really eager to wash her hair. So fingers crossed that she recovers quickly and gets to head home soon.

Luckily, some friends happen to work at the hospital where she’s staying — including the wife of a childhood friend / sometime bully (I seem to recall games during family gatherings that involved excessive consumption of Sprite followed by blocked bathroom doors) — so she has a nice room, and has had visits from doctor friends. That’s made a huge difference in her spirits and her experience. Still, I’m sad that I’m not able to be there to be an advocate on site. Hoping for a speedy recovery.

The chemo

This week I was less tired, so put in some long walks and did some light cardio. I also drove short distances a couple of times. One night, to get me out of the house, Sacha took me on a late night excursion to Target. They told us if you need to do stuff, like go to the grocery store, to go late at night when the stores are empty. I bought everything I didn’t need at Target, and it was glorious.

This past weekend I started to have some back pain and pressure on my right side, which made me fearful — is it working? Is the tumor growing? Overall, I’ve managed to stay positive — and I think for the most part I still am — but every once in a while these things cross my mind. The response rate for this drug — our best first shot — is about 30%. And I really want to be part of that 30%.

Then I get anxious about all the things I haven’t taught the kids, like how to properly optimize a dishwasher and care for an end-grain cutting board, and then things get crazy. I’d like to say that all I’m doing is hugging the kids all the time, but I’m not. In fact, I get agitated and probably overly critical because I want them to know how to do things the right way. And I realize all this is ludicrous and all I should be focused on is love and encouragement and happiness, but I’m on a lot of drugs right now so cut me some slack.

The God part

The relationship between faith and hardship is a funny one. Do I think that faith saves you from hardship? No — anyone who’s read the book of Job can attest to that. Does it guarantee you what you want, like a magic genie? No — though I must confess that if there were a magic genie type of faith that worked I would most probably sign up.

On Easter Sunday, Sacha and the kids went to church, but I stayed home, and found one of the sermons from John Buchanan, the very gifted pastor of the church I went to in Chicago. It was about the forty days that Jesus spent in the wilderness, alone. It’s about the wilderness of Moses after he surprisingly succeeds in liberating his people from Egypt. It’s about hardship, and loneliness.

“That’s the kind of thing that happens in the wilderness,” Buchanan writes. “You may not volunteer to go there. You may not like it there at all. But the strong biblical suggestion is that in the wilderness it is highly likely that God will come to you and things will change and you will never be quite the same again.”

I think that’s just it — for sure, I’ll never be quite the same again after this. That’s probably a good thing. But the other thing with faith — that God will come to you — is that you are not alone. Even at the darkest hours of the night, there is someone to turn to. A friend gave me a book called Help Thanks Wow: The Three Essential Prayers — and though I haven’t finished it, the title is right on point. Those are the prayers I pray.

Another friend shared Everything Happens for a Reason, and Other Lies I’ve Loved, written by a Kate Bowler, professor at Duke Divinity School who at age 35 was diagnosed with Stage 4 cancer. I read the first few pages, and wasn’t ready then to absorb Kate’s sadness — but again, I think the title of the book alone speaks to me. The important thing in suffering is not to feel alone. That’s what community, friends, family and faith gives me, and it has made all the difference.

 

The bright side

  • I’ve made it through my first cycle of chemo! Ready for the next one next week.
  • The dumb chemo brain days aren’t every day — just some days.
  • We continue to be very well fed — thank you, friends!
  • My hairdresser gave me a complimentary trim to get rid of the mullet-ness of my hair.
  • Every night I can see the sunset from my house.

I love the prayer that Rev. Buchanan quotes in his sermon (it’s worth reading, linked again here, if you have a moment):

This is another day, O Lord.
I know not what it will bring forth,
but make me ready, Lord, for whatever it may be.
If I am to stand up, help me to stand bravely.
If I am to sit still, help me to sit quietly.
If I am to lie low, help me to do it patiently.
And if I am to do nothing, let me do it gallantly.
Make these words more than words,
and give me the Spirit of Jesus. Amen.

Kathleen Norris
Acedia and Me

 

 

Go Blue (and Red) Devils

The day before

On Tuesday, before my first infusion, I wanted to get out and do things I wouldn’t be able to do for a while. So a friend and I went around and had breakfast at Good On Ya in Encinitas, where I ran into one of the girls’ beach volleyball coaches, walked over to the nearby Meditation Gardens, walked down to Swami’s beach, and stopped into Patagonia, where we saw another volleyball coach (pro tip: if you’re in the market for a volleyball coach, go to Encinitas on Tuesdays).

I just wanted to see a bunch of beautiful things that day. All is well in the world when you’re looking out and seeing this:

Neither of us (embarrassingly), has ever walked down to Swami’s Beach either, and it was so private and peaceful, it felt like a secret getaway:

It was a great last day filling my heart with wonder and beauty before filling my body with toxins. And thanks for all the flowers — I’m enjoying the heck out of them before I’m banned from them (and gardening!) for the second week of the cycle.

Infusion day 1

Did anyone else pick UVA to win it all in your March Madness bracket? Well, at least Duke still has a shot. Which would make me happier anyway. Go Blue Devils!!!

I’d heard that the first access of your chemo port was particularly painful, so super grateful when a friend gave me a tip to ask for a lidocaine prescription and apply it 30 minutes beforehand. Painless poke. I know you’re all wishing you had a resealable valve in your chests right now.

I used an old diaper bag to prepare a days’ worth of snacks, entertainment, and hydration. I was glad I did when I walked by the magazine rack and saw an assortment of publications there that were comparable to the most prominently featured Diabetes magazine.

The chemo people told me to hydrate — it makes a big difference in how you feel — so I am HYDRATING. I am the same person who in elementary school was so proactive about wiggling out my baby teeth for efficiency’s sake that I removed a permanent one (my dentist encouraged me to channel my energies in more productive ways going forward). Anyway, Plant Nanny is a great app (for anyone, not just patients) that gamifies hydration, and you get to feed a cute little plant you can name (I’ve been telling all the oncology folks I see about it):

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I also downloaded ChemoWave, which is a helpful app for patients where you can track symptoms, medications (I need it to keep me on track with the crazy schedules), and how you feel on which days of the cycle so that you can better plan your life.

Sacha brought me to the Infusion Center and stayed for a bit while they took my labs…then an amazing friend who I only met because I had cancer came and stayed with me for most of the time, taking notes on my meds, asking for blankets and pillows, buying me lunch…it was nice to have a pro along for my first rodeo.

Because it was my first time, they gave me a primo spot by a window. It was so nice and private and lovely.

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One of the medications isn’t one they typically administer, so we had to stop at one point to wait for someone to run around looking for it at the in-patient facility. It’s the one that goes in within 30 minutes before the the infamous Red Devil, so they wanted to be sure they had it on hand before starting. Below you can see the Red Devil in action being rapidly injected. Note the friendly warning on the red label.

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At one point they stopped the infusion because my heart started racing, and I was really hoping that it wasn’t an allergy to the dacarbazine which is a key part of the regimen. Luckily, we think it was the steroid they put in, and it calmed down by the time I left. I don’t even drink much caffeine so I’m sure my body had no idea what to think of the steroid.

Here I am eating salad to help me restore my healthy cells!

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Everyone said that the steroids amp you up and give you tons of energy, but I was actually pretty tired afterwards and took a nap in the early evening.

They gave me a patch with a pump which will start injecting some other meds into me starting at 5 PM tonight. Last night I kept seeing these flashing lights that seemed to change direction whenever I turned. I thought I was losing my mind. Turned out it was just the flashing light on the pump on my arm.

The first 24 hours is supposed to be the best, so we’ll see how it goes from here. I’ve spent the day getting caught up on things that require actual brain processing power, because I’m not sure what the next few days bring. I’m told that the first cycle is the nicest…but it gets progressively worse each time as the toxins accumulate. My regimen is an aggressive one, so they gave me four different nausea drugs which I am taking religiously…but apparently you can get some on this even a couple of weeks into the cycle. So far all good today.

The bright side

Stripper wig

Ok first of all, in response to all the demands to see the stripper wig — I hyperlinked to the actual wig’s online listing in the previous post. The only other pic I have before I cut it is one with one of my kids wearing it, and I asked if I could post it and she was like no, it’s a violation of my privacy, and I said I HAVE CANCER LET ME POST IT and she said I could only do it if I blurred out her face AND her body which destroys the whole effect of the picture, so I said face only and she said I WILL REPORT YOU. Those of you who know my girls will know exactly which kid that is.

I really don’t need any more problems right now, so just go to the hyperlink.

I smell like Whole Foods

Second, one of the things I have heard so much which makes me so happy lately is that many of you have made lifestyle changes because of my cancer. I really hope this means you will never have to have cancer. But if it’s helpful, here’s a list of practices I’ve implemented. Keep in mind I’m not likely to have done all of these when I thought I was just a normal, healthy person, but I’m kind of putting myself into a zero risk zone at the moment. Again, everything I’ve ever mocked I’ve now become:

  • I stopped using the microwave altogether. Sacha measured the radiation emitted from our microwave and it was alarming, even several feet away. And, it changes the chemical structure of foods, so who knows what that does. Now I warm things up in the oven or on the stovetop. It’s less work than it sounds.
  • I try only to buy organic produce, and even then I wash the pesticides off using the water and baking soda method. I admit to you, Chinese mothers everywhere, I was wrong and the Chinese newspaper was right.
  • The only non-stick pans I use are those from Scanpan, which are ceramic and titanium (inert) and the only ceramics I’ve found that perform as well as if not better than the traditional Teflon non-stick pans. Teflon, you don’t want that in your body. Apparently it’s so prevalent that traces can be found in most Americans’ bodies.
  • I don’t drink water from plastic bottles, or store foods in them unless I need to because I’m on the go. There’s an environmental component to this as well. And, this one I’m not very good at sticking to because it requires energy — I try not to put plastic containers in the dishwasher.
  • I read up a lot on diets: vegan, ketogenic, whole foods. All have interesting and compelling arguments and reasonably defensible studies behind them (I am a tough critic on studies as you know by now).
    • Before chemo, I focused on having a plant based diet, making sure I got plenty of protein and fats, and having just occasional organic animal-based proteins since those tend to be more inflammatory — and with cancer, you want to limit inflammation as much as possible. Any of those diets probably work relatively well for a healthy person.
    • Now that chemo’s started, all cells, cancerous and healthy, are being killed off, and most of all my body needs nourishment — so I think I’m moving more toward the whole foods diet, because there’s a greater variety of nutrients to replenish. The Godfather says during chemo he is a fan of the “See-Food” diet — when you see food that you like to eat, eat it. The most important thing is getting food into your body, especially when it can be hard. So I’m relying on my body to let me know what I should be eating. I’m learning to listen to it more.
  • I’ve always talked to my cells, especially when I’m sick, just asking them to do specific things for me. Now that I know a bit more about this cancer, I give them really specific instructions for my T-cells not to be fooled by the sneaky sarcoma cells. But I learned that I’m not the only loon who talks to my cells, and there are great meditations on YouTube that I use a lot. I’m not necessarily recommending my cell-talking ways to everyone, but I do think meditation is a great thing to do. One app I use frequently is Simple Habit, which just happens to be founded by a Duke grad, and which can be used really effectively during your workday or going about your business whenever you need some focus or relief.
  • I’ve started incorporating qi gong, which has roots in Chinese medicine, into my exercise regimen — mostly started when I had the chemo port surgery and my range of motion was limited. I figured, why not move my qi around a bit and see what happens. This is my favorite video, because all these random people walk past this girl who’s filming and stare at her, and she can’t help but crack up.
  • I limit what I put on my skin: the only moisturizer I use now is olive oil. For years now the only deodorant I’ll use is Native, which is the best performing aluminum free one I’ve found. They were recently acquired but maintain good quality.
  • I carry a triclosan-free hand sanitizer and wipes wherever I go. This one is my favorite.
  • I don’t use soap or shower gel that has any hormone disruptors. I like the Dr Bonners Castille soaps, which have 18 uses listed on the bottle (detergent, shampoo, etc) and a little goes a long way.