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.

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.

Prednisone CRAVINGS

I’m on a steroid that is doing weird things to my body. I’m actually losing a lot of weight here in the hospital. Best diet I’ve ever been on.

I gained a bit of weight last year so I tried a diet in November that my friend and mom both had huge success with but my body did not react whatsoever. The nutritionist was baffled that I had ZERO results. It’s all starting to make sense if the cancer was already in my body at that point it might have been throwing everything off. ANYWAY I’m losing weight. Yay. If only I could choose where the weight was coming from (RIP tatas and booty 😭).

And thank goodness because this steroid is making me SO HUNGRY. I can’t stop thinking about food. I’ll be mid-conversation with my mum and be like “omg I want stir fry.” Or when I can’t sleep at 4 am, I glance at Pinterest and I swear it just shows me endless images of gigantic platters of french fries, tater tots, curly fries, crinkle-cut fries and alllll the dips. It’s pure torture.

I’ll be mid breakfast and start getting sad that I’ll have to wait a few hours til lunch. That’s how bad it is. Usually, people gain weight on prednisone so I’m counting my lucky stars (for now) and will keep eating that carrot cake with dinner. Let’s hope it doesn’t all catch up with me soon. My face is starting to swell like a chipmunk a little but the doc said it’ll go back down once I stop such a high dose in a few weeks.

But the craziest part is I’m craving things that I don’t even eat!

It doesn’t help that all the commercials on cable in here are of fast food restaurants. I’m craving a spicy chicken sandwich from Wendy’s! WTF I haven’t eaten meat since 2007!

I’m making a list of places I want to eat as soon as I’m released from the hospital. I want a mahi burrito from Rubios, a veggie burrito from Lourdes in Cardiff, yellow curry and veggie spring rolls from Bangkok Bay. I would love a poke bowl but guess I can’t eat raw fish for a while… But once I can, you bet your butt I’ll be booking a flight to Oahu for a spicy ahi donburi bowl from Sushiya. (UPDATE) I just received some bad news that our favorite couple who owned my old neighborhood sushi spot sold it to their nephew 😭. I hope Mr. Sushiya (in his plaid shorts and pink polo) is enjoying retirement. I guess Station Sushi will do. Much closer. Still nommy.

I’m even considering a cheeseburger! Who knows, maybe I won’t be a pescatarian after all this. LOL!

The two things I miss most about not eating meat are hotdogs (yuck I know) and meatball subs from Subway (mind you, I was a teenager when I stopped eating meat). So kudos to my Troll homies for guessing these are also part of my cravings.

So if you’ve noticed me “loving” all your delicious food insta stories you now know why. This girl is drooling over your meals.

Yesterday room service brought me a bag of kettle chips but it must have been the bottom of the bag because it was all crumbs. So I added it to some left over Italian dressing and ate it with a spoon. This is my life now. 🤦🏽‍♀️

Just for fun let’s make a list of more yum yums I could go for:

– #2 Pinto Bean with a side of ranch from Taco Time (duh)

– PV (double duh)

– A giant bowl of pasta from this tiny Italian place I ate at in Venice once… this might be a little harder to access but hey this is my dream list, give me a break.

Tatsu Ramen – (ugh note-to-self: still need to find a good ramen place in San Diego)

Tim’s Cascade Jalapeño Chips

– The pineapple fried rice I made for my “Roomie Easter” this year

Papa Johns Cheese Pizza

Trader Joe’s goodies – all these Tik Tok TJ recs should be banned because they’re making me drool

Easy Mac lol

– Popcorn with jalapeños from a movie theater

This is the culprit 👿

Tootles Mermaid Hair

I have the most beautiful hair. People compliment it all the time. I don’t dye it, dry it, or use any special products. It’s just au natural. I always considered it my best asset. I liked to hide my body insecurity underneath it as well. In the back of my mind I always worried that if I was diagnosed with cancer that I wouldn’t know how to manage without my hair.

My first few thoughts after finding out I have leukemia was 1. my life’s about to change significantly 2. how’s this going to affect my fertility? (that’ll be a post for another day, perhaps) and 3. bye bye beautiful hair.

At first I thought I’d donate it since I didn’t want it to go to waste but then people kept saying why don’t you make a wig for yourself? I’d need to buy one anyway, why not use my own hair? Duh.

So I cut it off.

I had no idea that when I went to the doctor on that Monday that I’d be spending the next however many weeks in a hospital so I was so unprepared. I didn’t have a brush so I hadn’t brushed my hair in days. It was a complete mess. But I wanted to get it cut off while it was still healthy. I had to put it into a million ponies after a full day of brushing out dreadlocks. And then a sweet nurse cut each pony off and placed it into a bag one by one. Then she buzzed the rest and then BOOM I’m bald!

I thought I’d be more emotional but I didn’t cry or anything. I just sat there and chit chatted with the nurse about her kids and then it was over.

Some days I sit here and think how am I doing all this? I just take it one day at a time. That’s how it was with cutting my hair off. I just did it. I remember a therapy session once when I was going through a rough patch I told my therapist I was having a hard time doing things I used to like to do and then one day I just got up and went for a hike, or went to church, or met a friend for coffee and she asked how I was able to do it and I said “I dont know, I just did”. I don’t really have an explanation for how I’m dealing with all this. I just do it. I guess you gotta do what you gotta do.

Ok I lied, I had a little emo moment in all of this. I was concerned that my BFF Amelia’s daughter wouldn’t recognize me without my hair so I FaceTimed her before I cut my hair off and then a few days after to show her the difference. She was a little standoffish but she was eating dinner and she’s 2. In my mind, she just didn’t know who she was talking to. Amelia texted me the next morning and said she asked Alana when she was putting her to bed, “Did you get to talk to Auntie EE on FaceTime today?” and Alana replied, “Yes, EE wearing green shirt”. Which instantly made my heart melt because my (awful) hospital gown is green. She recognized me.

We found a wonderful local place to make my wig. It’s a little on the expensive side but it’s worth it to help me feel a little more like myself. Plus my sweet grandma wanted to do something to help so she’s covering it. Which makes it a little more special.

Amelia picked up my precious cargo yesterday from the hospital along with a wave from the “waving bridge” and dropped it off at the salon. They weighed my hair at 8.5oz! I’ll have a gorgeous wig of my own hair in about 12 weeks.

Until then I’m rocking this bald head!

#nofilter

My hair hasn’t started falling out yet so it’s actually growing in a little. I feel a bit like a Chia Pet at the moment. It’s fuzzy and fun to pet.

When I get released from the hospital, I may whip out some pink wigs from Halloween and plan to accessorize with bright lipsticks and funky earrings so stay tuned for some epic looks.

Well F*ck, It’s Cancer.

Life just threw me a major curveball. I was diagnosed with Acute Lymphoblastic Leukemia (ALL) 14 days ago.


I was sick as a dog in bed for 3 weeks. Many of the symptoms were similar to COVID19 so we figured that’s what I had. I self-isolated in my room for weeks with just virtual doctor visits to discuss my symptoms. At first, they said I didn’t need to get tested unless I was having trouble breathing and to just stay home and isolate. After a few weeks, I thought I was getting better and then crazy lymph nodes in my neck and my eyes started to swell up. That’s when I finally decided to get the coronavirus test. I celebrated when the test came back negative. The next day I made an appointment to get the antibody test to make sure I had it in the first place and to see what was up with the swollen neck of lymph nodes. When the doctor came in with a negative antibody test and saw that I had an extremely high heart rate she sent me straight to the emergency room. Thank God she did.


The emergency room was scary and they ran a million tests to get to the bottom of what was going on. They all still figured it was just a false COVID test result but after a 3rd negative they realized it wasn’t. So I was just sitting in a depressing room watching trash tv waiting for results and this frantic doctor comes in and briefly says “we are going to have to admit you to the hospital. It looks like it’s ALL” and then closes the door and walks away. It was the most surreal moment of my life. I didn’t have time to process what was happening and nobody really explained to me what was going on so I just called my mum and said what had just happened and then made arrangements to have my roommate come pick up my car because they were going take me in an ambulance to the hospital with the cancer ward.


The next day was more tests to make sure it was in fact ALL, and it was. They started me on chemotherapy the next day. They let me know I’ll be in the hospital for at least the next month and then be on chemo for the next year and maintenance for the following 2 years. What a journey I have ahead of me.


The craziest part of this is that my brother, Cory, passed of ALL 35 years to the day that I was diagnosed. My poor mother. She is in Momma Bear mode though. I just can’t help but feel guilty that she has do to this with a second child. Especially someone who’s dedicated her life to helping others in similar situations that she’s been in with the damn “C-word”.


I have faith in God, my incredible doctors and medical staff and myself. I will kick cancer’s ass and this is just another chapter in my book.


I wanted to keep this post short but I just have so much to say. I’ve been trying to sit down and blog about this since I got to the hospital but I haven’t been able to mentally. So sorry in advance for all the words words words but I know people want to be updated.


There are no visitors allowed in the hospital at the moment due to COVID restrictions which sucks. It also means I can’t have packages or deliveries. There’s a small pedestrian bridge I can see out my window that my friends have been coming to wave at me from. It’s so sweet. And I have been OVERWHELMED with the number of people reaching out to me to send support, love and prayers. You all make being stuck in isolation so much more manageable. And the generosity of the Go Fund Me page that my friends set up brings me to tears. I was not expecting any of this. I am so loved by so many. Thank you.


My job is being AMAZING through all this too. I am so truly blessed to have found such an incredible company to work for that cares about its employees in a way I never knew possible. I’m working as much as I can while I’m feeling well. It actually helps pass the time and I love what I do, so it doesn’t even feel like work! Plus I’ve convinced all the nursing staff on this floor to purchase some Peepers! 🙂


Everyone in the hospital is so great. I’m clearly the favorite on the 6th floor. 🙂 I’ve made friends with most of the nurses. I have more human interaction here than I did while I was sick in bed for 3 weeks so it’s great!


I’m feeling pretty good. Just some weird side effects and the occasional health hiccups here and there but overall not feeling super lousy. Yet. I think it’s supposed to kick in either this week or next. But they’re good at doing as much as possible to prevent feeling ill ahead of time. I had a little bit of pill phobia for a couple days but I think I’m getting over that. I just got an unexpected shot in my belly and that wasn’t fun either but I’m managing.


The food isn’t bad. I’m on a steroid that makes me RAVENOUS so all I can think about is food all the time haha so good thing the hospital food is decent. I’ll write another blog post about all the random food I’m craving at a later date. You’ll laugh.


I know a lot of friends and family want to reach out and don’t know how. And I don’t expect you to. I’d love a text or a message on social. I’m just chilling all day erry day so I’m down to text. I’d love to NOT talk about cancer and just talk about life and funny memes and pics of your dogs or your babies or anything really. So please keep reaching out. I love hearing from you. Just know that sometimes I might be too tired or ill to respond and ALSO my fingertips are going numb (which is very weird) as a side effect so there might be typos but I’ll get back to you when I can.

I appreciate all the well wishes but know that I’m doing ok and I freaking got this.