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.
This may sound strange, but I got emotional buying shampoo for the first time in over two years. My hair is growing ya’ll. To quote the wise ladies of “Drama Queens” One Tree Hill podcast, “Hair matters”.
It’s been a while since I posted a health update… sorry I’ve been living it up.
I’m doing well. I still have all my maintenance treatments (daily and weekly pills, monthly infusions and lumbar punctures and 1 crappy week of steroids a month). I don’t feel great but I also don’t feel awful.
I received monoclonal antibodies, four shots in my booty to protect me from covid since I’m still immunocompromised. I feel so much better knowing that I have that extra layer of protection.
BIG NEWS! Drummm roll please…………………
We have an end date! Light at the end of the tunnel. Doc said last treatment will be in September. SIX MORE MONTHS BABYYYY. You bet your okole I’m already planning my end of treatment party.
Last time I was in the clinic for a doctors appointment the front desk ladies were all gushing on how great I looked and were like “you’ve got your groove back”. They almost didn’t recognize me. We’ve come a long way.
I’ve been traveling and hanging out with friends. I feel like I’m making up for lost time and try to fill all my free time with F.U.N. But sometimes my body disagrees and gives me a gentle reminder that I’m still in treatment and have to take it easy. There are a couple days each month that I feel like absolute s-h-i-t and can’t leave bed or my “emotional support heat pack”. The rest of the days I feel like 45% crap, but that’s good enough for me. Last month I strategically scheduled my treatments and steroids so that I would feel awful in the tiny window between my friend’s bachelorette party, a huge weeklong photoshoot that I produce at work and jury duty. A diva is a female version of a hustla.
I went on an amazing trip to Cabo with girlfriends. I’ll write a blog post about that soon so stay tuned. I also went to Palm Springs for a wedding, Mammoth for a bachelorette party and Vegas for a Shania Twain concert. Ya girl is livingggg.
My oncologist asked me to participate in a study for young adults with ALL and of course I opted in. I feel like any way that I can help future leukemia patients I’ll do it. I actually want to do more. I’m looking into volunteering for the Leukemia and Lymphoma Society but I’m also open to other charities if anyone has reccomendations lmk.
Speaking of Drama Queens, lol at the beginning of this post, I’m actually headed to Wilmington, NC next month. Back to my roots. BTW, I painted my nails blue this week cuz Tar Heel Born and Tar Heel Bred…. I’m going out to spend time with my fam but I also want to visit the iconic OTH locations because listening to the rewatch podcast has uprooted some very nostalgic feelings. I won’t share photos from the last time I visited because it was when I was in high school and big yikes (hair, fashion, acne). I actually got to be an extra on an episode in season two. They cut me out but I promise I was there. You can see my friend and my foster sister. Maybe that’ll be a whole post on its own. Stay tuned.
Often times my response is “Great!” when people ask how I’m doing these days. That response is relative to how I felt last year but in comparison to my healthy life pre cancer it’s not so great. Does that make sense? I feel crappy 10/7 instead of 24/7 so to me that’s a win. Basically cancer gave me perspective. Or I’m a 7 (enneagram) and I just want to exude rainbows and butterflies.
I had a moment last week where I realized I might have some ptsd or something going on because I found some hair on my pillow. I am still on chemo. I just wasn’t expecting to lose hair again since it’s been growing like crazy. And then I had a visit with my oncologist and usually it’s just him and I in an appointment but this time there were 4 people in the room and he sat next to me and a moment of “oh crap I’m about to get bad news” flashed through my mind but really it was just that there was a fellow shadowing him and a nurse training with my case manager/nurse.
Maybe I need a therapist lol.
Then my doc was like “your liver numbers have been regular the past couple labs”, which is great cuz they sky rocketed for a couple months, and I thought he was going to say “so you can have tequila shots again” but instead he said “so we can increase the dosage on one of your chemo pills”. Major buzzkill.
A couple people in my life have recently been diagnosed with cancer and it breaks my heart. To know what they’re about to go through and how sick they’ll most likely feel. I just hope and pray they don’t feel as awful as I did and have a quick and successful treatment protocol ahead of them.
Well, the good news is I’m now 11 months away from my end of treatment. Less than a year left!!! *Insert party dance gif*
I woke up exhausted today. I haven’t been sleeping very well. A stranger on Instagram said she’s had the same problem and it might be because of the full moon last night. idk. I had a day jam packed with meetings for work and now I’m even more exhausted. Also, I have weird anxiety from social media crap that doesn’t even have to do with me or my life. Is that the full moon too? It’s also an empath problem. I’ve always had some sort of anxiety but since I was diagnosed with cancer during a pandemic I feel it differently. So fun, she said facetiously.
I had a bone marrow biopsy a couple weeks ago. I was super anxious about it because my last one was traumatic, but it went better than I expected. It was the same nurse practitioner that does my lumbar punctures so that helped because we’re homies. It was way quicker than my last one and only one part hurt really bad. I was sore for a long time afterwards though. It’s been a few weeks and it still feels a little tender. My results came back clear which means that the chemo is working and there’s no sign of cancer! Even though I’m on a break from chemo, I still had to get a blood transfusion when my counts were too low, and an infusion the infectious disease doctor said I needed to insure the cdiff doesn’t come back, since I’ve had it twice in the hospital now.
I feel so good these days. It’s insane how just a few weeks off of chemo can really make a difference in my body. I am walking like a pro. I don’t even use my walker or walking sticks anymore! I still waddle like a drunk toddler sometimes but hey, baby steps. Pun intended.
I’ve had a couple outings which have been delightful. My doctor said that since my counts are rising I’m less immunocompromised which means I can leave my bubble a bit. I still have to be extra cautious until I’m vaccinated, which will hopefully be soon.
My parents, Coco and I went to Palm Springs for the weekend a couple weeks ago to see my aunt and uncle and one of my best friends that was in town. It was so nice to leave my house, sit in the sun and socialize with one of my bffs. As my health is increasing I also need to boost my mental health and this weekend did just the trick. And last weekend I went up to see Amelia in her back yard. Again, just a couple hours in the sun with people I’ve missed so much means the world to me after the year I’ve had.
Yesterday my mum wanted to check out Julian, a little town in the mountains known for their pie. We were not prepared for how freaking cold it was. Mum told us the temp before we left but didn’t take into account the wind factor. My dad was in shorts and slippers lol. So we drove all the way up there, got some pie and drove home. The pie was bomb though. We’ll go back when it’s warmer, and when I can drink wine again because there are a bunch of wineries on the way up.
Sorry this post was all over the place. I just wanted to send out a quick update since it had been a while. To summarize: Cancer’s gone. Still in treatment for a long time. But feeling good.
*please excuse any typos, I’m too tired to check Grammarly
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.
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.