FightingCancer

Cancerversary – 2 Years Fighting Leukemia

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

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

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

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

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

#cancerversary #leukemiawarrior #cancersucks #leukemia #cancerfighter 

Color of the Moment: Kumquat

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

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

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

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

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

ANYWAYYYY

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

“Who We Are” – Tyrone Wells

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

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

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

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

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

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

view from the puddle jumper

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

K now go listen.

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

I’m Too Sexy For My Hair

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

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

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

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

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

we should normalize pizza for breakfast

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

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

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

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

In the wise words of Phoebe Buffay, 

“Happy Christmas Eve Eve”

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

Thanksgiving, Birthday & a Trip to the ER

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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

Inspiring Strangers

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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).

my wfh buddy – pretzel legs

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.

a funny card a friend sent – preach

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.

more puppy spam cuz she’s so darn cute

My wig arrived this week so I’ll do another post soon with my new do.

Tata for now!

I Barfed in a Garbage Can…

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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

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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

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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.