I’m Too Sexy For My Hair

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

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.

Tell Your Homies You Love Them

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.

ILYSM

Things I’m Looking Forward to Doing Post COVID and Cancer

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.

my happy place

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.

this photo makes my mouth water

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.

miss my ori sisters too

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.

Dublin with my momma a couple years ago

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.

trees make me feel small

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.

Lady Liberty in all her glory

7. Visiting museums. 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.

Not sure I quite understand contemporary art but I try

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.

< 3

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?

Shoots den.

Thanksgiving, Birthday & a Trip to the ER

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.

My girlfriends drove down from LA to visit and celebrate the beginning of the end of chemo
celebratory pumpkin pie

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.

bored af in the ER – discovered instagram selfie filters

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!

yay for being out of bed!

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.

Tootles

Cancer is Kicking My Okole

But I have this shirt so… booyah!

Mahalos Nat & Court. I’m so lucky to have you in my corner and F R I E N D S for life.

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.

I was hooked up to a million things

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.

Tanks Pauline 🙂

This nugget keeps me company (when I have food) and she falls for the “fake donut” every time.

dat face doe

Ta ta for now…

-xoxo Gossip Troll

I Barfed in a Garbage Can…

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.

so many pills 🤪

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

Tootles.

Flower Power Reminder

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. 🤣

Fighting Cancer is like a Full-Time Job

and I already have a full-time job. I’m exhausted. Luckily I can do both jobs simultaneously. I’ve learned that a lot of my appointments are mainly just waiting around so I now bring my laptop to get work done in the waiting room or during transfusions.

I’m out of the hospital! And boy is it hard work. Between scheduling appointments and visits with my oncologist, the physical therapist, the cardiologist, labs in the clinic, transfusions and procedures and I haven’t even started chemo yet! Just talking about it makes me tired.

My last day in the hospital was traumatizing. I didn’t sleep at all the night before. I needed a bone marrow biopsy and a lumbar puncture. The bone marrow biopsy was taking longer than I expected and they kept hitting a nerve that would send a shooting firework-like pain down my calves. They finally brought in another nurse practitioner to finish the job on the 3rd try. Luckily she was successful but I’m pretty sure I was shaking by this point because I couldn’t see what they were doing and it just sounded like they were using swords on my back. Between the sounds and the shooting pains, I was beyond freaked out. Then I had a 5 min break to calm down and then they had to do the lumbar puncture. I’d had two already that were a breeze but for some reason, they were having difficulty with this one. They tried several times and just couldn’t get it. Plus they hit the same nerves that sent more shooting pains to my calves. I cried a lot and they called it and were unsuccessful. It was the worst 2 hours ever. I was worried they’d keep me in the hospital another night but they still released me that day. Which might have been a bad idea.

They also cut me cold turkey from the prednisone that day. 29 days on an extremely high dose and then just stopping is insane. Usually they taper you off but they didn’t with me. The doctor warned me that I’d feel pretty bad for a couple days but he described it as a hangover. This, sir, was no hangover. It was MISERABLE. The sharp shooting pains returned to my knees in the middle of the night and my pain killers didn’t work. So they prescribed me something stronger that made me feel super confused and weird and paranoid. Everything was so uncomfortable. I was very irritable and still couldn’t sleep. I think I went 3 days without sleeping. I’d cry in the middle of the night because I was so uncomfortable and angry and sad. I felt like I should have still been in the hospital. My legs and body were so weak I could barely walk. The best way to describe it is extreme discomfort inside and out. My blankets felt too heavy. Nothing could comfort me. I never want to feel that way again.

Luckily after a few days I started feeling better. The prednisone was leaving the body. And I finally slept! It was a miracle.

I returned Monday to finish the failed lumbar puncture but this time they used an x-ray machine to determine the exact spot to go in and weird enough they had been in the right spot when they tried before so we’re not really sure why they were unsuccessful. I was just relieved to get it over with finally. I have another one next week fml.

I’m all moved in to my new house. It’s a mess right now. My bed and TV are set up but the rest is just a bunch of boxes. I need to get it furnished but that’s hard work when you’re exhausted.

I came home to a bunch of cards and care packages. Thank you everyone for all the love. It’s really overwhelming (in a good way).

My face is still very large and in charge from the prednisone. I’m still waiting for it to die down. My hair has started to fall out but not much of it. I still have a fuzzy head. My hands are very numb now and actually hurt most days. They’re super sensitive to hot and cold and the clinic is always freezing. Today I wore Ugg boots in June. That’s how cold it is in there.

Anyway enough of my ramblings… TTFN.

#CancerSucks Update

The first few weeks of being in the hospital were seeming like a breeze (well as much as fighting for your life can feel like a breeze, I guess). But then SMACK all of the sudden it got rough real quick.

I’ve had some issues since I’ve arrived. My heart rate goes really high whenever I get up. They weren’t that worried about it because it’s pretty asymptomatic. I don’t get dizzy or light-headed but sometimes I can feel it racing and showering can be difficult but for the most part, I don’t feel any different. I just am hooked up to a Telly Box (I call it my Telly Tubby) that monitors my heart rate. And all the nurses come running in when I brush my teeth because I can go up to 190. Even though it doesn’t affect me, I’d still like to know why it’s going up so high. I’ve had approximately 1 million EKGs, but they’re all laying down so it’s normal. So after 3 weeks of the doctors just guessing what it could be, the nurses started to push back and that’s when I was like oh maybe I should care more about this too. They thought it was my PICC line tickling my heart so they pulled it out a bit. It didn’t work. Then they pulled it out a little further and it actually went down! For like an hour. Major bummer moment. So then a couple days later the completely removed the PICC and it did nothing. At least they tried something but it wasn’t the answer. Then I had to get labs drawn for a few days without my PICC which sucks because I’m a baby with needles and have tiny veins. But it’s back in now.

So back to square one. My doctors said they’d be in touch with the cardiologists and I was like that’s fine but they haven’t seen me. So the nurses started recording every time my heart rate when up, which was every time I stand. I’d had all the heart tests before starting chemo so they knew my heart was ok it just has this abnormal heart rate. I think because the nurses were now so involved I was more conscious of it and I could start feeling my heart rate rise. One night I was eating dinner, seated, and the nurse ran in saying it was high. I wasn’t even up! So I had a full-on panic attack. They had just told me I was going home this week and they hadn’t done anything for my HR! I couldn’t breathe or settle and then they brought in an x-ray, another EKG, and surprise surprise – a cardiologist. I should have done this weeks ago. They still don’t really know what’s happening. Could be the anemia combined with treatment or maybe I’ve lived with this without knowing. But they started me on a medication that’s supposedly going to help regulate it. But they’re still not that worried about it. So I’m not going to either. It’s just scary not knowing why. Can’t wait to get rid of this telly box though. I slept on it the other day and now I have a pain in my back. Salt in the wound.

been hookd up to this dude for way too long (my telly tubby)

Then I had probably the worst night of my life last week. My legs have been hurting. I think it’s a combination of being in bed so much (I feel restricted because of the HR issue) so I haven’t been moving as much as I probably should plus my counts are going up quickly and sometimes you’ll feel that in your bones(?) – I forget what the doctor said. Anyway, one night I woke up in EXCRUCIATING pain in my knees. It felt like a crazy stabbing pain in both my knees out of nowhere. Thank goodness my nurses were sweet baby angels that night. I was clenching the side of my bed and a full face of tears and they did all they could to alleviate my pain. They gave me a pain killer that didn’t work so we had to wait for a couple of hours before they could try something else. We also did an ultrasound, labs, and an X-ray and everything looked normal so it was yet another mystery. They finally were able to give me some fentanyl which was fast-acting but also wears off quickly so it was painful off and on all night. It was horrible. I didn’t sleep a wink. The next night it only hurt when I got up but was ok when I laid back down. It’s been ok since. Just more sore than anything. I just feel so weak. It’s weird to be so strong one day and then completely unable to walk to the bathroom on your own the next.

My tingly fingers have turned into numb hands. It’s all the way down my palms now. It’s really hard to type and use my phone (so ya’ll better appreciate this post LOL).

I have to get a shot in my belly every morning (see above comment about being a baby with needles) which SUCKS. It looks like I have a ton of freckles around my piko, but they’re baby bruises from the injections.

Ok enough of the bad shit, GOOD NEWS! I’m going home tomorrow (or Thursday) depending on how tomorrow goes. I have a bone marrow biopsy and lumbar puncture and have to lay in bed for an hour and then can maybe go home! Which is funny because I’m moving this weekend and my house isn’t ready. They originally told me I’d be going home next Wednesday so I was not prepared. I’m trading in my beautiful mansion with a pool, a panoramic view of the ocean, and a house full of homies for a little beach cottage with a small view of the ocean. 

With COVID still happening I’m going to have to live in a bubble for a while so I can’t go back to my house so I’m staying with a family friend who has a gorgeous house on the cliffs at the beach for a few days. They’ve been quarantining and it’ll be a peaceful oasis for me to rest while my loved ones pack up and move all my stuff for me. How lucky am I?

I can’t wait to get out of this bed and hospital and eat allll the foods and maybe get some actual sleep one of these nights.

My body is responding well to treatment and my counts are coming up nicely. I’m hoping this is a good indicator of how the rest of treatment will go. Prayers for that would be appreciated – mahalos. They want me in the clinic ASAP for phase two. I’m still not sure what that looks like but here we go.