Cancer

Cancerversary – 2 Years Fighting Leukemia

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TWO YEARS FIGHTING CANCER in selfies. Another rollercoaster of a year, this time with more hair. It was slightly easier than the year prior, thank goodness. There seem to be more good days, some realllllly crappy days, but mostly just ok days.

I’ve gotten used to feeling super down during steroid weeks. I know when I’ll be out of commission and when I’ll typically start feeling better. My chemo is manageable and way less intense. I calculated it and I’ve had almost 80 chemo infusions since I started treatment two years ago, and almost 25 lumbar punctures. I tried to calculate the number of labs, pills, shots, and clinic/doctor’s visits but it was impossible.

I can’t believe it’s been two whole years since we thought I had COVID and it ended up being Leukemia and my whole life flipped upside down.

There is a light at the end of the tunnel though. I’ll be done with it all in September, if all goes as planned. It was kind of smooth sailing-ish up until recently. I’d been excited to update ya’ll on how great I’d been doing (relatively) but then… this past month I started feeling really lousy with extremely low energy, fevers and strange pains and we’re not really sure what’s wrong. I’ve been in and out of the ER and clinic trying to get to the bottom of it and haven’t been successful. I even got a blood transfusion for the first time in over a year because my hemoglobin took a dive randomly. I had a 2 year cancerversary tea party planned last weekend that I had to cancel and a work trip I didn’t make it on this week. I’m on a break from chemo to help my immune system fight off whatever’s going on. I seem to be on the mend, I hope.

I’ve taken full advantage of the good days. I try to adventure and spend time with friends and family as much as possible, to make up for lost time. I am so thankful for my support system and medical team. This has been an insane two years, but I am coming out on top. 

#cancerversary #leukemiawarrior #cancersucks #leukemia #cancerfighter 

Fake it til you make it?

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Often times my response is “Great!” when people ask how I’m doing these days. That response is relative to how I felt last year but in comparison to my healthy life pre cancer it’s not so great. Does that make sense? I feel crappy 10/7 instead of 24/7 so to me that’s a win. Basically cancer gave me perspective. Or I’m a 7 (enneagram) and I just want to exude rainbows and butterflies.

I had a moment last week where I realized I might have some ptsd or something going on because I found some hair on my pillow. I am still on chemo. I just wasn’t expecting to lose hair again since it’s been growing like crazy. And then I had a visit with my oncologist and usually it’s just him and I in an appointment but this time there were 4 people in the room and he sat next to me and a moment of “oh crap I’m about to get bad news” flashed through my mind but really it was just that there was a fellow shadowing him and a nurse training with my case manager/nurse.

Maybe I need a therapist lol.

Then my doc was like “your liver numbers have been regular the past couple labs”, which is great cuz they sky rocketed for a couple months, and I thought he was going to say “so you can have tequila shots again” but instead he said “so we can increase the dosage on one of your chemo pills”. Major buzzkill.

A couple people in my life have recently been diagnosed with cancer and it breaks my heart. To know what they’re about to go through and how sick they’ll most likely feel. I just hope and pray they don’t feel as awful as I did and have a quick and successful treatment protocol ahead of them.

chemo infusion, but make it cute

Well, the good news is I’m now 11 months away from my end of treatment. Less than a year left!!! *Insert party dance gif*

K tootles I’m off to get a needle in my spine. 😝

Color of the Moment: Kumquat

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Sometimes I get stuck on a color. I buy everything in that color and I start seeing it everywhere. Earlier this year it was Pink. Then I moved on to Kumquat. I think the obsession has subsided but I wanted to share some of the moments I had with it this summer. (see above photos)

I guess I should take this time to update ya’ll on what’s been going on lately. I don’t even remember the last time I wrote about my health. I’m doing pretty good for the most part. The steroids weeks are still brutal but there’s not much I can do so I just power through. I got my 3rd covid shot as soon as it was available. Otherwise I only feel ill on the days I get a chemo infusion and a lumbar puncture. I also am getting a migraine about a week after I finish my steroids which sucks big time. My hair is growing like crazy… I’m just leaning into the mullet while it grows out. I used to have super straight hair and it’s growing back curly. It’ll be interesting to see if that stays.

My favorite nurse practitioner who did all my lumbar punctures moved back to the east coast to be closer to family. Everybody was bummed. I got to be her last procedure. I wrote her a little card as a goodbye and shared it’s rare that someone looks forward to a lumbar puncture but she did that for me. We became buddies and she was such a bright light in a very dark year where I didn’t get much social interaction so her friendship meant a lot. I’ve had one LP since she left and it wasn’t horrible but it also wasn’t great. I have another one coming up and I’m certainly no longer looking forward to them.

I graduated from physical therapy after a year. It was bitter sweet. Happy that my body has recovered enough to not need as much assistance but sad because I became friends with my PT. Another person who boosted my social interaction when it was limited.

A couple weeks ago I had a really stressful day. I had just come back from Seattle where I attended a funeral and a wedding so I was physically and emotionally exhausted. It was the day after a 3-day weekend so work was nuts and the cancer center was backed up. I normally wouldn’t schedule such a busy day for myself but the circumstances of travel and holiday weekend were unavoidable. I was at the cancer center all day with labs, a visit with my oncologist, chemo infusion, lumbar puncture, and a shot in my booty. I also had to hop on a few calls for work because we were a week out from the major photoshoot and had to meet deadlines with my team on the product end of things. On top of it all my dad had a super scary accident was in the hospital for a week and was being released that day AND we were moving to a new house at the same time. I was in the rough part of my steroids so I felt like crap too. Everything was all happening at once and Mercury wasn’t even in retrograde. I obviously managed but it just made me take a step back, give myself some grace and remember that I’m still fighting this ugly cancer beast and it’s ok to not be ok all the time.

ANYWAYYYY

Since I’m over the orange hue, what color should I obsess over next? I guess it’s fall now so maybe I’ll lean into a darker palette but I also love bright colors so who knows. LMK your suggestions.

“Who We Are” – Tyrone Wells

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I’ve mentioned before that Tyrone Wells is my favorite singer/songwriter. I’ve been to tons of his live shows, his music always touches my heart and played a small part in helping me get out of a toxic relationship (read more here.) Today he released a new single called Who We Are and you should run, not walk to go listen to it.

I was alone in the hospital, just days after I was diagnosed last year, and Tyrone hosted a live performance on his instagram which was so perfectly timed with what was going on in my life. So I reached out to him on insta and thanked him. From there he would occasionally check in and see how I was doing and started following my cancer journey. (Side note: I know some people have a problem with the word “journey” when talking about their cancer experience but I think it’s pretty accurate and don’t hate it at all). Anywhooo back to my story- earlier this year Tyrone asked for my email to send an unreleased song and holy moly what a thoughtful gift. I immediately burst into tears because every bit of that song spoke to my soul. He said if I liked the song, it could be a sort of an anthem and he was 100% correct. I thanked him for thinking of me and said how it completely resonates with my life but it’ll touch so many people as well. He said I was the first person outside his work crew and family to hear it. Wow how special. This whole cancer thing really sucks but there have been some really beautiful moments to come out of it and this was one of them.

I told all my closest friends to listen to the song today and they all wrote me back saying they got chills.

The bridge goes “I will turn the pain into tears of gold, I’m not caving in, I’m not letting go. When I hear them say, that it can’t be done, I’m not laying down, I will overcome.”

You have to hear it because the whole song is powerful.

Last week, I was flying from Oahu to Maui which is a 40 min flight in a 12 passenger plane and I kid you not, I listened to this song on repeat the whole ride. It was really hard to keep the tears from falling down my face in that tiny airplane. I was also on Decadron which makes me super emo… I was so moved that he shared it with me and thought about me and my journey. I also thought about all I have been through this past year. The months in the hospital alone, the night in the ICU where I almost died, the pain, the nausea, the anxiety, the sleepless nights, learning how to walk again, the isolation, and everything in between. I still have bruises on my stomach from shots I got over six months ago. I see them every day and it’s a reminder of where I’ve been and how far I’ve come. I was also flying from a weekend with one of my college roomates on Oahu (which is such a special place to me- where I went to college and had the time of my life) to Maui for my nephews 10th birthday party with the rest of my family. I am beyond grateful I survived this past year and get to celebrate these unfortettable moments.

view from the puddle jumper

I didn’t share much of the absolute worst days with ya’ll because 1. I was so stinking sick and 2. I didn’t want to scare you with horrible details. But know that it sucked. You can’t control what happens to you but you can control how you react and I chose and am choosing to smile through the pain and always seek the good in every situation. Plus, this whole experience has made me stronger and I can only image who I will be after I’m done with all of this. Speaking of, even though it’s more than a year away, I am planning an epic end of treatment bash where maybe I can convince Tyrone Wells to perform this song… lol dream big, right?

K now go listen.

“I believe, yes I believe it. I can see, yes I can see it. Though I’m not there yet, I lift up my head. I believe, yes I believe it. I can see, yes I can see it. Every bruise and every scar makes us who we are.“

A Picture-Perfect Pinch Me Picnic

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As of Tuesday, I have been fighting cancer for ONE WHOLE YEAR.

I wanted to do something special as a thank you for the girls that have been my San Diego fam through this insane year.  They’re the ones that made signs and waved at me from a bridge outside my hospital room when they weren’t allowed in due to Covid, organized video messages when I was feeling down, brought me dinners, constantly checked in, and did more for my morale than they even know possible. I am forever grateful. So as a small token of my appreciation I hosted a sunset picnic at one of our local neighborhood viewpoints overlooking the ocean.

First of all, I love hosting and planning events, and this gave me something to dive my energy into besides work lately. There are tiny details, if you look closely, that I tried to put a lot of love into. I arranged the flowers myself (and then all my girls brought me bouquets of flowers themselves as a gift – they know me so well), stuck to a color scheme (pink is my current color obsession), designed “thank you” cards along with handwritten geode name tags for everyone’s table setting, bought an insane assortment of snacks for grazing boards (+ pizza duh), curated a playlist that included songs that reminded me of each of my guests from a specific memory with them, and had a cheeky “F Cancer” sign to remind us what we’ve been through. To top it all off Amelia made the most gorgeous candy platter of my dreams.

We laughed, cried, hugged (for the first time in a YEAR), ate way too much, watched the sunset, and had the sweetest evening with the best friends a girl could hope for.  

*I wish I had taken more photos but honestly, we were enjoying each other’s company that we forgot to.

*Shout out to my BFF Amelia. She’s v preggo and I’m still pretty wobbly/fatigued, and we set up this whole thing just the two of us.  

How lucky am I that I get to call these girls my friends? Pinch me.

You bet your butt I’ll be throwing a blowout party when my treatment officially ends that EVERYONE will be invited to… but we still have over a year before that happens so stay tuned. 

alohaaa

Young Adult Cancer Awareness

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This week is AYA (Adolescent & Young Adult) Cancer Awareness Week. Yes, I qualify as a young adult (I googled it).

I was just one of 89,500 AYAs (in the US) diagnosed with cancer last year.

AYAs are the most underserved cancer population by age. I sit in a chemo chair surrounded by patients 20-30 years older than me. And I’ve been involved with childhood cancer orgs/programs for my whole life – where there are tons of resources.

The goal of this week is to raise awareness about how hard it can be for young adults under 40 to deal with cancer while trying to keep up with their lives. The hope is to educate on the unique challenges AYAs face and show what their community can do to support them.

One of the cancer accounts I follow, Stupid Cancer, posted on their instagram a series of challenges AYAs deal with and each slide resonated with my experience.

Luckily in my case I was diagnosed in my thirties so I’ve finished school and started a career but I do not have a significant other. Dating during cancer treatment is hard enough but throw a worldwide pandemic into the mix and ya girl has never felt more single.

I don’t feel like myself, with all my ailments, but also I don’t look like myself. So it’s hard to imagine getting to know someone else when I feel so off. I know I’m still me but I want to be the best version of me when I’m possibly meeting my person. But also, I just want to have fun with my girls when this pandemic ends… so who cares anyway? lol

I’ve always been super independent. I haven’t lived with my parents since I was in high school so having them move to California to help take care of me was an adjustment.

I don’t really know how I would have survived this last year with out them upstairs to help. There were so many things that I normally would easily do for myself but all of the sudden couldn’t handle. I couldn’t do my own laundry, cook meals, grocery shop, drive to appointments, clean, walk up stairs, clip my finger nails, open bottles, pick up items, reach for things… the list goes on.

I mean not so long ago I was so weak that I couldn’t even button my jeans.

I was diagnosed at the beginning of the pandemic last year. Not being able to have visitors in the hospital with me for the months I was there alone was bad enough. But I also have to go to the clinic and all doctor’s appointments by myself and haven’t been able to go to friends houses or have visitors in my home. I’ve never spent so much time alone in my life.

Thank goodness for technology but I crave social interactions. I miss my friends.

I constantly talk with my friends about how it’s a silver lining that I did the rough part of my treatment during the pandemic so I didn’t miss out on too much. But I still have FOMO from the few little adventures that I am unable to do. Just a couple more weeks until I’m fully vaccinated!

Holy moly the scanxiety is real. I imagine this won’t ever get easier. I’ll live with this the rest of my life.

When I can’t sleep I google statistics about relapses and then my mind races and I just have to remind myself that I can’t even go there. I just have to manifest that I’ll only have to fight cancer this one time.

Sometimes I think about my brother who died from ALL but then I also think of my friend Natalie who had the same diagnosis when she was a kiddo and is doing great.

Deep breaths and happy thoughts…

This is one of the first things I thought of when I was diagnosed becuase many of my cancer survivor friends have had a difficult time with fertility along with the fact that I’m over 30 and do not have a husband or kids but do have a ticking biological clock.

I am currently in chemical menopause, in an attempt to save some of my eggs. Heyooo hot flashes. But I’m still in treatment until I’m 33 and there’s no guarantee I’m going to meet someone anytime soon. I’ll most likely freeze my eggs, if there are any left. TMI? I just know that I would very much like to be a mother.

I know it’ll all work out one way or another but this is a topic that’s often in the back of my mind.

Thank goodness I have great health insurance but I still have so many medical expenses that aren’t covered. I would much rather be spending that money on anything else. There are still a bunch of pending charges on my account that are like your insurance paid 90% of this bill but you owe $10,000 and I just have to wait and see if I’m actually charged that.

One day I was looking up on my account how much my first month in the hospital cost and it was $600,000.00. Let me say it again – six hundred thousand dollars. For one month! What do people who don’t have insurance do? That is not ok.

I read a comment on the instagram post that was from a young man saying he was diagnosed with ALL (which is my diagnosis) at 35 and was out of work for 3 years and I just thought how lucky am I that the longest I was out of work was for 6 weeks. I’m so grateful that I can work from home and feel well enough (most days) to do so. It’s actually given me something to do that makes me feel productive and helps pass the time. I can’t wait to actually get back to the office to be able to work in person. Again, I miss that human interaction. I’m sure a lot of people do.

I am not a part of any support group and haven’t participated in any cancer events, mostly due to the pandemic but also I’m just not aware of many for my age group/diagnosis. My clinic/cancer/hospital experience isn’t like a movie where I meet my soulmate or bff in the clinic… my empath soul just gets pretty sad waiting amongst the older patients, I wear my headphones so I don’t have to hear the old men snoring and try to make friends with the nurses because they’re the only ones around my age.

After the pandemic, my friend Lizzy and I plan to volunteer with a cancer organization. Everything’s on hold at the moment so we’ll have to do some research to find the right one when we’re able to. I’ll keep ya’ll posted.

For more info and/or resources on AYA Cancer Awareness visit the Stupid Cancer website.

Th-th-that’s all, folks.

A Bone Marrow Biopsy, Palm Springs & Pie

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I woke up exhausted today. I haven’t been sleeping very well. A stranger on Instagram said she’s had the same problem and it might be because of the full moon last night. idk. I had a day jam packed with meetings for work and now I’m even more exhausted. Also, I have weird anxiety from social media crap that doesn’t even have to do with me or my life. Is that the full moon too? It’s also an empath problem. I’ve always had some sort of anxiety but since I was diagnosed with cancer during a pandemic I feel it differently. So fun, she said facetiously.

I had a bone marrow biopsy a couple weeks ago. I was super anxious about it because my last one was traumatic, but it went better than I expected. It was the same nurse practitioner that does my lumbar punctures so that helped because we’re homies. It was way quicker than my last one and only one part hurt really bad. I was sore for a long time afterwards though. It’s been a few weeks and it still feels a little tender. My results came back clear which means that the chemo is working and there’s no sign of cancer! Even though I’m on a break from chemo, I still had to get a blood transfusion when my counts were too low, and an infusion the infectious disease doctor said I needed to insure the cdiff doesn’t come back, since I’ve had it twice in the hospital now.

another day another blood transfusion

I feel so good these days. It’s insane how just a few weeks off of chemo can really make a difference in my body. I am walking like a pro. I don’t even use my walker or walking sticks anymore! I still waddle like a drunk toddler sometimes but hey, baby steps. Pun intended.

I’ve had a couple outings which have been delightful. My doctor said that since my counts are rising I’m less immunocompromised which means I can leave my bubble a bit. I still have to be extra cautious until I’m vaccinated, which will hopefully be soon.

My parents, Coco and I went to Palm Springs for the weekend a couple weeks ago to see my aunt and uncle and one of my best friends that was in town. It was so nice to leave my house, sit in the sun and socialize with one of my bffs. As my health is increasing I also need to boost my mental health and this weekend did just the trick. And last weekend I went up to see Amelia in her back yard. Again, just a couple hours in the sun with people I’ve missed so much means the world to me after the year I’ve had.

Palm Springs
Amelia’a backyard & chickens

Yesterday my mum wanted to check out Julian, a little town in the mountains known for their pie. We were not prepared for how freaking cold it was. Mum told us the temp before we left but didn’t take into account the wind factor. My dad was in shorts and slippers lol. So we drove all the way up there, got some pie and drove home. The pie was bomb though. We’ll go back when it’s warmer, and when I can drink wine again because there are a bunch of wineries on the way up.

so ono

Sorry this post was all over the place. I just wanted to send out a quick update since it had been a while. To summarize: Cancer’s gone. Still in treatment for a long time. But feeling good.

k bye

*please excuse any typos, I’m too tired to check Grammarly

World Cancer Day

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Today is #worldcancerday. Even though my life has always been touched by cancer in some way – my brother died of cancer before I was born, growing up I volunteered at various cancer organizations, I traveled to DC to advocate for cancer research funding, I interned at the Ronald McDonald House in college, and I worked for a childhood cancer foundation for almost 5 years – I now have a completely different perspective of this dreadful disease.

This past year has been the hardest in my life. I’ve never felt so low, so sick, so helpless. I always knew the kiddos I worked with were strong but I understand on a whole new level now.

I guess this day is to help spread awareness but I’m pretty sure everyone’s very aware. I bet every person on earth has somebody in their life that has been affected by cancer. Which is why it’s important to do what we can to prevent, detect earlier and treat cancer successfully.

Some ways you can help is by making a donation to a reputable nonprofit, volunteering your time, donating blood, or sending your favorite bald mermaid funny memes to get through the tough times.

This year has been a rollercoaster ride (lots of ups and downs and vomiting) and I couldn’t have gotten through it without all your support, encouraging words, prayers and aloha. Thank you.

I’m Too Sexy For My Hair

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I fell so hard in the clinic the other day. I was walking in and stumbled over my stupid numb toes. I cried out in pain and strangers came running. A little too cocky with my walking skills, I should have been using my walker instead of my walking poles. They put me in a wheelchair, took my vitals and did an incident report. I’m just relieved I didn’t hit my head. My doctor checked me out and everything seemed ok until I got home. Both knees, one ankle and the opposite foot started to hurt. I iced them all evening. I woke up in the middle of the night to use the restroom and I couldn’t put any weight on my foot. I sat and cried because I didn’t know what to do. I already have a hard enough time getting around. Luckily with the aid of some pain killers, towards the end of the day I started feeling better and was able to walk again.

you can see some bruises on my legs from my fall… but how cute is my sweet support doggo?

LOTS of chemo this week. On top of IVs, tummy shots and a lumbar puncture, I started a new chemo pill. The pharmacist said to not let anyone else touch the pills, keep them in the bottle (not in a pill box), and to wash my hands after I take them. If it’s that toxic to touch, imagine what it’s doing to my insides. Or don’t, chemo gives me enough anxiety as is – *insert emoji with huge “ahh” eyes.

I haven’t been nauseous yet, thankfully, but I woke up today with a headache and crazy body aches. The mouth sores are back. I’m also having difficulty with my vision. It’s hard to read this page even. I just feel unwell.

I’m on a break from my steroids thank goodness because the lack of sleep, puffiness and constant need to be eating were getting to me. One morning I was craving pizza for breakfast so I made (my mum made) a pizza bagel. Bagels make it breakfast-y. On a scale of 1-10, it was yum-tacular.

we should normalize pizza for breakfast

I look like cancer. A few years ago, when I worked for a kids cancer organization, I was with a group of kiddos at Alcatraz and requested for all of them to ride in the ADA cart to the top (it’s a long walk up a huge hill from the boat) and the attendant looked over at the group and said “all of them?” and I said “yes, we are a kids cancer organization” and he said “well they don’t all look sick” and I wanted to SMACK him. How do you know what “sick” looks like, bro? Don’t worry, I didn’t inflict violence and the kiddos got the ride to the top of “The Rock”. Well I look sick af. I glance in the mirror and I’m like woah. I’m super pale with weird bags under my eyes. My face is v round like a Cabbage Patch Kid. My hair is falling out like crazy. I think I look like Uncle Joey’s woodchuck puppet from Full House. The resemblance is uncanny, ay?

Same Same. *images are from google. please don’t sue me. the images of me are mine. obvi

As I was walking through the clinic the other day I took in all the people around me. I’m one of the younger patients there by far (sometimes I see other young adults but not often). But I just thought how sad it is that, because of covid, we can’t have any guests in the cancer center. If covid wasn’t happening these people would have their significant others, children or friends to help push them in a wheelchair, keep them company in the waiting room (where we spend a lot of time), and hold their hands during treatment. I’m ok going in on my own because I’m an I-N-D-E-P-E-N-D-E-N-T (do you know what that mean) woman but maybe I would feel differently if I had the option. Plus my mum has to spend a lot of time in the clinic’s parking lot.

how beautiful is this tree? mum really nailed it this year

In the wise words of Phoebe Buffay, 

“Happy Christmas Eve Eve”

*Pretend it’s yesterday – I meant to post then but I had a rough lp, almost fainted, went to bed as soon as I got home and didn’t get a chance to hit publish and don’t want to take out my “Friends” reference . mmk thanks.

WINTER SOLSTICE MOOD

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We don’t really have seasons in Southern California but it gets dark awfully early these days. I’m excited for the Winter Solstice because that means the sun will start going down later from now on. It is a little chilly too (lol 60s) so I’m digging the cozy mood.

I wouldn’t mind some actual winter. This is the first Christmas I won’t be spending in Hawaii in a loooong time. Since I won’t have a tropical holiday I’m now craving snowy vibes. I thought maybe we could drive up to Big Bear or Idyllwild and rent a cabin but I googled it and apparently, there’s no snow yet. Plus I have to be in the clinic basically every day for the next two weeks getting chemo so I guess I’m staying put. Maybe later in the season, I’ll go seek a winter wonderland. Idk how my numb feet would handle snow anyway.

I whipped up this “winter” inspired mood board with the energy support of a white chocolate mocha – my current obsession (thanks steroids) since I’m still not sleeping much (again, thanks steroids). Speaking of, my Secret Santa at work sent me some white chocolate truffles and I have to pace myself. I’d like to eat them all in one sitting. One family tradition we’re missing this year is a large batch of pizzelles. My mum forgot the pizzelle maker in Hawaii (ugh). If anyone wants to send some my way I wouldn’t object. I’m usually not much of a sweets person but cancer has changed that. These days I’m a hangry sugar-craving monster.

Christmas looks a little different this year. I hope you get to spend it with loved ones (safely) and can still participate in some of your traditions. Mine are garlic shrimp for brunch, a day at the beach and a ride on the Sugar Cane Train. Guess we’ll have to raincheck on the latter two.

We plan to watch Elf on Christmas Eve. It’s our family’s favorite holiday movie. It won’t be the same without my nephew, who knows every word and is the funniest person I know. Maybe we’ll FaceTime that cotton-headed ninny-muggins so he can watch with us.

My world is v small at the moment and my creative outlets are limited due to mobility issues and crazy numb fingers so putting together this mood board was a mini pick-me-up on the (almost – I know it’s tomorrow but I’m impatient) shortest day of the year. Yay for getting a smidgen more daylight from here on out.

Happy Winter Solstice Ya’ll

*None of the photos in the mood board collage are mine. I found all of them on Pinterest.