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 started feeling lousy on Christmas. I had a lovely brunch with my parents and we watched Christmas movies and then I went to bed for the next two days because I felt like crap. I got a blood transfusion on Sunday which usually makes me feel better. But the following days I still felt like crap. I just figured I needed another blood transfusion and I go into my appointment on Thursday, which was so hard. I could barely walk to the car. I almost fainted twice that morning. I get to the clinic and they take my temperature and see that I have a fever so they send me to the ER, because my counts were so low. My ANC was at 0.0. I’m admitted to the hospital and they find out I have an infection in my blood and start me on antibiotics. Then my c diff came back and I started to have PTSD from my last visit to the hospital and start to worry that I’ll be stuck there for a month again. My fever wouldn’t go away for days. It’s pretty scary to be in the hospital with several infections and a fever with almost no white blood cells (to fight infections) and super low counts. But the medications started working and my counts started to come up (with the help of daily shots in my belly) and I’m out of there in a little over a week. Thank goodness. That was not how I wanted to start my new year but whatever.
The pharmacy called me before I was discharged and they’re like one of your medications is a bit pricey and I’m like oh yea that’s because it’s a new year and I haven’t met the deductible yet so I’ll just pay for it. The cost was $2400. For 12 pills. That is just INSANE. What do people who don’t have insurance do? Die?!
I’m behind on my chemo schedule since the little hospital visit set us back a bit. I’m starting up again on Thursday and will just have 2-3 more weeks left before I can move to maintenance. I’m looking forward to finishing but not looking forward to feeling like crap until then. It’s crazy how the cure and treatment can be almost worse than the cancer. Someone needs to find a better way to fight this crap. Cancer sucks. But so does chemo.
Sometimes I spend all day at the clinic. This day I had labs, a blood transfusion, two chemo infusions and a shot in my booty. Luckily I had a big project at work so I put all my energy into that instead of focusing on the fact that I was in the clinic for like 10 hours. My AirPods died towards the end which was a big bummer. I really need to start bringing a charger with me everywhere. I don’t know how I haven’t learned that lesson yet. I am so not going to miss long days like that.
My hair does not look like the picture above. It’s falling out like crazy but I look so funny. It’s like an old man with a receding hairline because the front is falling out but the sides are still pretty long. I look like George Costanza from Seinfeld. I think it’s time to buzz the rest off.
This sweet nugget was so happy to see me when I got home from the hospital. She laid on top of me for like 20 minutes as if to say you’re never leaving ever again.
Wish me luck as I finish off this never-ending trying-to-kill-me round of chemo.
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.
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.
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?
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.
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.
My cancer treatment steroids give me crazy insomnia so I woke up at 3:30 this morning. Instead of the typical online shopping routine for the sake of my bank account, I channeled a wannabe VSCO girl and created this little collage.
If this year has taught me anything, it’s that life is too dang short.
This crap year feels like a blur. I’ve missed out on so much. With a worldwide pandemic happening, most of us feel that way, but with a suppressed immune system from chemotherapy, I’ve especially had to live in a bubble with little to no exposure to other people. Life is still happening around me. Several of my friends are getting engaged, having babies, and celebrating milestones and I could not be happier for them. I wish I could give hugs, jump for joy and just be around them.
My godfather passed away a couple of weeks ago, as if this year couldn’t get any worse. I know he knows how much I loved and admired the incredible man he was and how lucky I felt to be his goddaughter, but I wish I had told him more. I encourage you to share with your loved ones how you feel before you don’t have the chance to. Life can change in an instant.
I could not have gotten through this year without the support of dear friends from all over the world. Simple texts, funny TikToks, snail mail, sweet DMs, flower deliveries, FaceTimes and phone calls have kept me going.
I thank my lucky stars for all the memories and laughs I’ve shared with so many good friends over the years. I know that I’m going to beat this cancer and can’t even let myself think otherwise but I also know I’ve lived a full life thus far and am blessed to have had such beautiful experiences in just 32 short years. But don’t worry, I plan on filling my life with many many more.
Best friends make good times better and hard times easier.
So friends (you know who you are), aloha nui loa. You are everything to me. Life is about connection and relationships and somehow I hit the jackpot with all of you.
2020 has been such a strange year for everyone but I think my year has been a tiny bit crazier since I was diagnosed with leukemia. There are so many things that I miss since I’ve had to live in a bubble but instead of focusing on the negative, I’ve decided to make a list of things that I’m looking forward to doing once again.
1. Jumping in the ocean. I asked my doctor the other day if they’ll be taking out my PICC line when I move to the maintenance phase of my treatment and he said yes! Boom Shakalaka – that means I can jump in the ocean soon! And he’s like well you know the ocean is very cold right now. I was like I know but I’m just planning for the future and possibly a trip to Hawaii when it’s safe to travel again. But I don’t think I’ve ever gone this long without swimming in the ocean and this mermaid is craving a magical dip.
2. Eating poke. Beacause of my treatment, I’m not allowed to eat raw fish and it’s torture. Every time my mum asks what I want to eat my answer is “poke” and then she says “you can’t have poke” and I say “but that’s what I want”. Anyway, I’ve tried imitation crab “poke bowls” to try and satisfy the hankering but it’s not the same! I want spicy ahi from Tamura’s.
3. Dancing. I miss dancing Tahitian and hula so much. I can barely walk up stairs, my muscles are all shot and I have bad neuropathy so I couldn’t even fathom trying to dance right now but I will get stronger and will shake my booty again.
I’ve been following this TikTok famous woman on social who was diagnosed with leukemia a month before me. She’s an incredible mother of 5 young kiddos and has had such a rough cancer journey as well. She’s a dance teacher and has been dancing through her treatments and I’m so inspired by her positivity. But sometimes it makes me sad that I can’t dance like she can. My body just isn’t strong enough at the moment. I have to remind myself of that quote “comparison is the theif of joy” and just believe my body will heal miraculously and I will dance again.
4. Traveling. This is an obvious one. I’m used to traveling allllllll the time that it’s been so bizarre to just sit at home for months on end day dreaming about different cultures, food, architecture and people. My Pinterest is full of adventures to be had. I’m thinking Paris, Greece, and Prague, or maybe Thailand and Kuala Lumpur or New Zealand. The list goes on and on honestly… I am open to recommendations.
5. Hiking. Like I said above, I can’t even climb stairs without it feeling like Mt. Everest so I can’t wait for my body to be strong enough to just even stroll through nature. I miss trees, fresh air, playing word games with friends on the way up and the views at the top. I also love that I feel closer to God when I hike.
6. Going to a Broadway show. When I was 10 years old my mum took me to New York for the first time and we saw Annie Get Your Gun with the incredible Bernadette Peters as Annie Oakley and I FELL IN LOVE with Broadway. My eyes were glued to the stage and I sat in pure wonderment for two hours. It encouraged me to pursue acting and shortly after that trip, I auditioned for a local summer program where we performed Into the Woods. I was cast as just a woodnymph (aka chorus background nobody) but it kicked off a passion for performing and I participated in many musicals for years to come. For my 12th birthday, my parents surprised me with FRONT ROW tickets to see Annie Get Your Gun at the Paramount in Seattle. We were so close the actors were spitting on us and I brought my best friend who’s a redhead and the main actress pointed to her as they took their bows and said there’s the next Annie and winked at us. It was so special.
My mum and I have been watching a lot of cheesy movies on Netflix lately but they’re set in NYC and it makes me want to visit so bad. As soon as I kick this cancer’s butt and covid gets under control, we are booking flights to the Big Apple and are going to as many shows as possible. Starting with Mean Girls.
7. Visitingmuseums. I enjoy museums, fun installations, and art pop-ups. I like learning new things and all but one of my favorite things to do in an art museum is rename the pieces. You know like a super old Renaissance painting that should be named “Cardi B’s WAP” or something stupid to spice it up. LOL. I’ve considered curating my own pop-up museum but that sounds like a lot of work. It’s still on my bucket list for when I have more energy and/or win the lottery.
8. Social gatherings. I miss my friends. I want to throw a dinner party. I want to have a glass of wine in a bar. I want to eat chips and salsa at a Mexican restaurant. I want to go to a baseball game. I want to attend a picnic at the beach. I want to dress up and dance the night away at 80s night at the Belly Up. I want to hug my bff.
I have high hopes for 2021 and just pray that we can all get back to a “normal life” soon. Ok your turn – what are y’all looking forward to doing most?
I’ve started my last cycle of chemo! So far it’s going ok. No nausea, thank goodness. But I’m on a steroid that makes me VERY hungry and feel strange. It’s hard to focus and I feel really lousy and irritable. But I’ll take that over vomiting I guess. Also, my chipmunk face is back.
Right now I’m getting chemo once a week and then the weeks of Christmas and New Years I have chemo 4 times a week (party). While I was getting my first infusion of the new chemo I decided to google it. Bad idea. I discovered that it’s typically referred to as “The Red Devil” because it’s red in color and is the most toxic chemo drug. Lovely. I’m also still getting the chemo that makes my fingers and toes numb and now they’re number than ever. I tripped over my feet this morning because the neuropathy is so bad it’s hard to walk.
I spent two days in the ER this weekend. I woke up Friday morning with gnarly chest pains. I got ahold of the doctor on call and they told me to go to the ER because of my previous blood clot. I spent the day getting tests and waiting around for answers and finally at 6pm the cardiology team told me they wanted to admit me to the hospital because there was fluid around my heart and wanted to make sure it wasn’t getting worse. So I waited to be admitted. and waited. and waited. I finally just went to sleep around midnight since they never moved me. They did an echocardiogram the next day and I just waited around for hours. I was going bonkers. The first day I kept asking for water and snacks and the nurses would say they would ask someone and then never return. I was starving (see above about steroids). They finally brought me food at like 7pm and it was cold string beans and chicken (I dont eat chicken). Day two they at least started bringing me food and water. But it was again food that I don’t eat. So I was living off saltine crackers. I also didn’t have my phone charger with me (rookie mistake) so all I could do to keep myself occupied was watch Say Yes to the Dress and Property Brothers. It’s also scary to be in an ER in the middle of COVID, especially where you have to share a bathroom with the other patients. Towards the end of the second day I asked the nurse if I was just allowed to leave and she said no. I googled it and I guess if you leave the hospital without being discharged your insurance won’t cover it. I was considering making a run for it. Picture me with my walker running out of the ER in the green gown with my booty hanging out. She messaged the BMT team that I wanted to leave and my oncologist (luckily) was rounding that day so he came by. He said that he hadn’t heard from the cardiology team (of course) but the scan looked ok to him so I could go home. Hallelujah! The silver lining in this crappy ER experience is that we found out that the blood clot in my lungs is gone. My doctor said as a birthday gift I could stop my daily belly lovenox shots. What a relief! My parents picked me up and I went straight to get a burrito.
I had my first outing of the year. We drove out to Palm Springs for Thanksgiving. We stayed at my aunt and uncles house. There were just a few of us but we all wore masks around each other and social distanced and ate outside. I stayed in the casita away from everyone anyway. But it was so pleasant to lay in the sun by the pool. It was nice to just be somewhere that wasnt my home or the clinic. I wore my wig and put on a dress!
Sunday was my birthday. It was lovely to hear from so many friends. I truly have the best people in my life. I can’t wait to see you all again. I just relaxed at home and had Thai food for dinner. As much as it sucks that I’m turning a year older when I feel like I was ripped off this year I also can’t help but be thankful I lived to see another year. But we could all decide together to subtract a year from our age because 2020 shouldn’t count. Who’s with me?
I see the light at the end of the tunnel. I have a few more weeks of chemo and hopefully these COVID vaccines will start happening and we can get back to “normal” life soon-ish.
I had the sweetest conversation with a nurse as she changed the dressing on my PICC line.
She said that last week she had a newly diagnosed patient in for his first chemotherapy and he was terrified. He asked her how he’s going to live and be himself and she immediately thought of me. She’s like I know patients who don’t let cancer define them. She told him one of her patients (me) lets them know when she doesn’t feel well and if she’s nauseous she tells them I tried this and that and it didn’t work so lets try something else until I feel better. And he was like how am I going to work? And she’s like well this patient is a rockstar and she’s still working. Plus she never is grumpy or angry even on her worst days. I was like its a decision you make. You’re steering the ship. Then she goes “so you are an inspiration to people you don’t even know”.
That made my day.
I am still working. The other day I threw up between zoom calls. I just make it werk (sassy snap snap snap).
This last chemo round was rough. LOTS of vomiting and nausea and horrible mouth sores and thrush. I had a sore in my throat that made it hard to even drink water. At one point I had to take a pain pill and chug as much water as I could while it didn’t feel like daggers of glass in my throat. I ate weird baby food and lost more weight. The fellow at my doctor asked me what was worse, nausea or mouth sores and I was like idk bruh it all sucks. I also had a hard lumbar puncture that left my back sore for weeks and a horrid headache for days. One day I went in for labs around noon. I sat in the waiting room an hour and a half after my appointment. My labs came back saying I needed a blood transfusion which takes 4 hours. My 3pm appointment came and went and they didn’t get me in to the clinic until 6pm. I was the last one there and finished close to 10pm. And of course I forgot my headphones. It was the longest day of my life.
I am starting my LAST ROUND OF CHEMO next week! I should be done by February. Then I’ll be on maintenance (chemo pills and a few lumbar punctures) for two years. But I’m just excited we’re nearing the end of the intense treatment phase. This next round looks gnarly with strong drugs so keep up the prayers and positive vibes because I need it.
My wig arrived this week so I’ll do another post soon with my new do.
It’s been a while and I know a lot of you have been anxious to hear how I’ve been doing. It’s certainly been a rollercoaster.
Back in July I got pancreatitis from one of my chemo drugs and ended up in the hospital. What I thought was just going to be a couple days in the hospital turned into an entire month. The worst month of my life to be exact. My body just kept getting worse and worse. Along with the painful pancreatitis I got sepsis, c diff colitis, a lung infection, and a blood clot in my lungs. I spent a few days in the ICU which is all kind of a blur in my memory except for the night that I almost died. I still don’t know what happened but I remember a million people in my room trying to save me. I remember asking a stranger if I could hold her hand and then thinking I should call my parents to tell them that I love them. But I survived. Thank God. I still get chills when I think of that night.
The rest of my hospital stay was horrible. I was in a ton of pain and didn’t get a lot of sleep and it felt like every day I was getting news that my body had a new ailment. I also didn’t eat for a month.. I was fed through an IV. I had to train my body how to eat again which was awful and strange.
But I finally got out and am doing much better. I had quite a long break from chemo since they were letting my body heal. I’ve been out for over a month and I still can’t really walk well. I use a walker when I’m in the clinic. I’ve been working with a physical therapist and I’ve been getting stronger but am nowhere close to where I was before my hospital stay.
This round of chemo is considered the “easy” round yet my body has not been responding well. I was super nauseous for a few weeks and could not hold down any food or pills. Then I developed a monster on my lip. My entire lip was a blister for two weeks. They held off on my chemo last week to let me heal. So I’m currently feeling good but know that I have more coming my way in a few days. It’s like the calm before the storm.
I haven’t posted in a while because I literally have nothing to share. I’ve been living in a bubble. I stay downstairs in my little apartment because I can’t climb stairs and the only place outside of my house I go is to the clinic. I watch a lot of Netflix and work from bed. So there’s not really much to report. Occasionally I have friends visit in the front yard but it’s been so hot out it’s been hard. I recently went through some old photos and it makes me so sad that I can’t travel or go on adventures but then I have to remind myself that I’ve been so lucky to have had so many incredible experiences. This is all temporary and I will adventure again.
I watched a virtual gender reveal last weekend. So many of my friends are having babies. I am excited to be an auntie again and again but it makes me sad that I don’t get to celebrate in person. I also have been watching love stories on tv (mainly One Tree Hill lol) that make me want that special bond with someone and all I can do is wait until I’m better and covid’s under control before I can even put myself out there. What an exercise in patience. There was a cute nurse at the clinic a while back.. so maybe there’s hope after all. 😉
One of my girlfriends sent me fancy nail polish. It’s crystal-infused and the top coat has tiny amethysts in it. It’s called Healing Energy and I need alllll the healing energy vibes I can get.
This nugget keeps me company (when I have food) and she falls for the “fake donut” every time.
Fighting cancer this week has had its ups and downs.
I am on day 9 of round two of chemo. And it’s a lot of work. Right now I’m going in 4 days a week to get chemo, labs twice a week and a lumbar puncture once a week with doctor’s appointments in between. My chemo includes a pill twice a day, a shot in my tummy when I’m in the clinic and sometimes an IV, and an injection in my spine during my LP.
The first week I was feeling ok from the treatments but towards the weekend I started to slow down. Nothing major just some fatigue. Then yesterday I was getting my normal belly shot and my labs came back saying I needed a blood transfusion. They gave me some blood and I decided I’m going to get those Halloween vampire teeth to wear next time. But towards the end of my transfusion, I started to feel weird and just figured I was starving since I’d been in the clinic all morning and it was lunchtime. So I rushed to the cafe to get a bite before my LP. Hunger was not the feeling because I could barely take a few bites. So I headed to the waiting room for my LP. I felt horrible and just wanted to go home. All of the sudden I knew I was going to get sick. This was a new waiting room and I couldn’t find a bathroom in time so I barfed in a garbage can. I apologized to some lady and she was very sweet. Bless her heart. Last time I barfed in a garbage can was at Fiesta Del Sol last year when I drank 1 million wines and then went on 3 sketchy spinning rides in a row. My how things have changed.
Then I had an LP. It was successful but took longer than normal because the fluid wasn’t flowing quickly like it normally does and we all know it’s not my favorite procedure. The lady that does it is very sweet and the nurses gave me cold rags to help with the nervous sweating. They gave me some Zofran to help with the nausea and then I felt better but I was beyond ready to go home. It was a long day. I had a sweet care package to come home to. Y’all keep sending me candy and I have no self-control so all that weight I lost in the hospital will be back in no time lol.
My physical therapist said she was expecting me to be worse off this week since I started such a rigorous chemo regime but was surprised with my progress.
My balance is much better and I’m managing stairs and walking longer distances. I’m on a new heart medication so that helps. But the other day my Apple TV wasn’t working so I wanted to unplug it and I couldn’t reach the plug and it was so frustrating. I finally reached it after struggling for a while and then was basically stuck in a corner on the floor. Something so simple was extremely exhausting and almost impossible and that’s something I’ll have to get used to. I wanted to cry. I’ve been fairly strong through all this just taking it as it comes but some days I just can’t believe how much my life and body has changed in a matter of months.
My hands are still numb and annoying and now my feet are too. I hate wearing socks but my feet are so sensitive to hot and cold that I have to wear socks now. My hedgehog hair is still falling out. I wish it would all just fall out already. My face is slowly getting slimmer… not as fast as I’d like but whatever my face mask covers it anyway.
I have to take a break from watching 90 Day Fiance because who knew there were all these spin-offs that suck you in?! I am deep in the rabbit hole but these crazies are stressing me out so I can’t do anymore. So any new TV suggestions would be appreciated. 🙂 Mahalos
Right now my face is still puffy and large from the prednisone and my hair is falling out and growing in at the same time so it’s patchy and weird. Needless to say, I’m not looking like myself. I almost get startled every time I look in a mirror.
I’ve been going through photos to print for a gallery wall in my new place and can’t help but feel sad about my hair. I know it’s just hair and it’ll grow back but it was such a part of my identity.
I stumbled on this French Proverb on Pinterest: “Wherever life plants you, bloom with grace”. Life has planted me here, with cancer, isolated from the world because there’s a dangerous pandemic happening and I must bloom with grace. I have to remind myself it’s all temporary. I know that I’ll be a stronger person after going through this, but it’s just hard to see the end in sight. I guess I just have to take it one day at a time.
No rain, no flowers.
I love to wear flowers in my ear and found a bunch of photos to remind myself of my essence. I’m ready to rock the bald and puffy look with the same confidence as when I have mermaid hair and a giant flower in my ear.
Just needed a little flower power reminder in this downpour.
*Just realized I added an extra O in bloom in my image. Guess I’m bloooooooming with grace. 🤣