Team Turtle

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Well, I’m Terrified

Last week I went to Stanford to meet with the bone marrow transplant team... It was terrifying! The team was great, the doctors professional, the support awesome, the procedure...wtf???? 

I trust what my care will be like at Stanford but I thought I’d already gone through some stuff? I AINT SEEN NOTHING YET. What I’m preparing to go through is going to be the most intense experience of my life. And, I’m afraid of that but I know I can get through it. I think what scares me most are my long term effects. I’m 28, I’m so afraid of another reoccurrence, I’m so afraid that this will come back and eventually take my life. Not now... but maybe in 20 years. I know it’s important to stay present and I try, but these are thoughts that I do have to think about on the reg. Each drug I take (which are a lot!!) have these potential long term side effects. And while I’ve been VERY lucky in the past and truly believe that drinking water will solve everything... i won't ever know until it happens.

I’m on my second round of ICE chemo on Day 3. I have about 9 hours left on my 24 hours drip (where I get chemo for 24 hours) and then I have a 12 hour drip of a drug that protects my bladder. It’s looking like I’ll get to escape to my own bed tomorrow around 1 and have the weekend to recover a bit. I’ve been tolerating the chemo okay but usually Day 3 is when I’m the most tired and nauseous sooooooooo I’m glad I’m writing this early :)

I’ve had lots of lovely visitors which has been awesome because it makes the time pass quickly and I’ve been working from my laptop which also keeps me busy!!!!! But today, I have chemo brain and I think I’m just going to watch some shows on Netflix and nap (and share a couple pictures of course!)

Hopefully this is my last round of ICE. I’ll be getting a PET scan in a few weeks and if it’s clean I get to go to Stanford and start the transplant process which means a shit ton of chemo and harvesting my “clean” cells. Not gonna be too fun but I get to live in their hospital for a month. If my PET isn’t clean I believe we still harvest my cells and I’ll have 2 more cycles of ICE. I’m hoping, praying, wishing, putting out good vibes for my best case scenario- a clean scan. But we’ll see. 

Last week I spent some time balancing work and time for myself. I made it a point between hospital visits and work to spend some time at Cancer Care Point. I took an awesome afternoon nutrition class Monday afternoon which was great! It talked about blood building foods to eat after chemo and since I have a blood cancer I’m excited to try some recipes made by my wonderful mother. I also went to a cancer collage class on Friday which was nice but again, the closest person to my age was 45 which is much closer than usual! Lots of ladies from my yoga for cancer survivorship class were there, but I haven’t been to yoga in a while. Inspiration to go next week! 

I’m still feeling good, I think I’m much less lonely this time around because I’m letting people visit me in the hospital and that I live with Eliz. So, I always have a friend to talk to! I’m also getting connected with more and more lymphoma communities that have been incredibly open, welcoming, and supportive. I’m very grateful to have some online support as well as in person with the groups I go to (mainly Healthy Young Attitude). 

Alright, it might be the chemo brain or that I have nothing else to say but Peace out, Girl Scout! 

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A couple of my hospital visitors!

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Just a few princesses. 💖💕

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ICE ICE Baby

We’re now almost caught up! 

On December 28th, 2016 I went to Kaiser and got my first round of ICE. I got set up in my own VIP room in the hospital and started meeting the doctors that would be taking care of me over the next few days. 

Day 1: I only had one 2-hour infusion, it was a new drug to me but I ended up taking it pretty well. My mom was with me the whole day and I had a friend visit in the morning and another one visit at night. I basically was just monitoring my body for a reaction, nothing too exciting! Visitors made the time pass pretty quick which was great. I started binge watching friends, and I was feeling pretty okay.

Day 2: Day 2 is my highest drug day. I have 1 infusion over 2 hours, another one for 30 minutes, and my last one is over 24 hours. That one is pretty rough and definitely makes me feel the most sick. I didn’t start that one until the afternoon so a couple of my best friends came and visited me before it and we gabbed, had lunch, and just listened to music and chatted. I was so happy to have the support and once again, it helps pass the time!

Day 3: I felt the worst on this day. My infusion didn’t end until 3:00. I had to have another 2 hours infusion after and one more 12 hours infusion. I thought I’d be able to leave the hospital on day 3 but my infusions didn’t even end until 3:30am on Day 4 so, another night in the hospital, luckily a lovely co worker came and visited me that evening... but I think I was pretty loopy!

Day 4: I WAS ANTSY! I was really, really ready to be discharged from the hospital and I felt like I was waiting FOREVER! I was finally released around 1pm on the 31st. My New Years Eve wasssssssssss pretty lame to say the least! I slept, and slept, and set alarms to take pills. Happy New Year! 

It was really nice to have the week between Christmas and New Years off from work, but alas, I started working (part time and remotely) on the 3rd. I stopped taking anti-nausea meds that Wednesday (way sooner than I thought!), and started working out again the same day. I’ve been to Kaiser everyday since chemo. I have to get a shot each day to boost my white blood cells, and I have to have blood drawn all the time to monitor that. I’m really grateful I live 10 minutes away from the hospital. 

The side effect to these shots are bone ache, which I didn’t start to have until Saturday. It’s not debilitating though, but I do have it in my hips and lower back. I’ve been taking some tylenol and using a heating pad to help with the pain. I can still walk, drive, and do normal activities... just gotta be aware. 

I’m hoping that I only have 1 more round of ICE, but reflecting back on how things have gone in the past I wouldn’t be surprised if I had 2-4 more rounds :(. As always, I’m hoping for the best and staying as positive as I can! I meet with the Bone Marrow Transplant team on Wednesday so I’m a little anxious of what’s to come next!

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Fallelujah

The very beginning of Fall started with another surgery! I had been bugging Kaiser all August (once my fertility procedure was done) to set up my next surgical biopsy/ goiter removal. I had some vacation time that I wanted to be able to use and I was hoping that the stars would align to make it happen! 

I was NERVOUS about this surgery. Dr. Butt was going to be removing my thyroid to get behind it to one of my cancerous tumors, I would also need to have my breast bone broken to remove my goiter. This was going to take a month to recover from and I’d have to spend a couple nights in the hospital (Which I also was really, reallllllllllly not looking forward to). 

I was nervous about this surgery because it was going to take longer and be more difficult to bounce back from. The procedure went well, and only half of my thyroid needed to be removed but what was so miraculous is that I didn’t actually have a goiter at all!! The mass in my chest was an extension of my lymph node... now, this raises more questions than anything else but I am grateful it wasn’t there. To me though, this news meant that I had cancer in my chest, near my heart and lungs!!!! BUT, the doctors told me no such thing. They did say it ended up shrinking with the chemo... but it never showed up in my PET scan so I guess I’m still just going to focus on that!!

I really hate the scar from this procedure. The last 2 surgeries I had Dr. Butt could use the same entrance point so she didn’t create any new scars. The original scar is also more faint, can be covered with a necklace, and is flat. The new one is in the middle of my neck and it’s a few inches long. It stayed swollen for a long time and unfortunately it’s still red (4 months later). I’m still hopeful that it will continue to fade... but I’m also really self conscious about it. 

A few days after my procedure I got an email from Kaiser confirming my Hodgkin’s Lymphoma, it was really nice to have no surprises. My mom and I met with the oncologist to go over what my treatment plan would look like. I thought that we’d just review what she had told me during the summer. I’d get 3 months of the steroid base chemo and move into the stem cell transplant. I was fooled AGAIN!!! I don’t know why I can’t seem to learn that nothing goes as planned!

When the doctor was discussing my options with me she included what we had originally planned, but she also had told me that a lot of research had been done over the summer while I wasn’t going through treatment. The oncologist was really excited about the potential of me participating at a clinical trial at Stanford. This trial would be using immunotherapy to send my body into overdrive and attack the cancer. I cried (of course) because it was yet another change in my treatment plan, but she told me the trial was offered at Stanford and honestly, that was the main reason I agreed to it. I thought I’d have better care, better treatment, I’d be working with LYMPHOMA specialists and Stanford  has a pretty great cancer center. My mom was also incredibly excited about it and the oncologist thought it was the best option for me. I told my oncologist I would like to participate and she got the ball rolling. 

And then I got a call....

My oncologist called me like 3 days later and told me that the trial was no longer available. She also told me she knew me well enough to not call with JUST that information. She told me about a different trial at Stanford that was the same drugs as the original one with a backbone of chemo, she asked if I wanted to participate and I said yes. 

The team I had at Stanford was A+ I can’t even recommend better people. My quality of personal and medical care was a million times better than it was at Kaiser. I’ve always been a fan of Kaiser, I hadn’t really had any problems, I’ve liked most of my doctors, and I feel like I’ve gotten what I need for the most part. But Stanford, oh my god, it was just incredible. I had a team of 5 people just for me! They met with me each visit, constantly checked in on me, they were all so professional and knowledgeable, and they were not uncomfortable when I cried!! They were supportive, and educated. They reminded me a lot of my fertility doctor. Just, such a great team. My first meeting with them was quite comprehensive and long, and as much as I rave about Stanford the first day was difficult. They were telling me more about the trial; the treatment I’d be getting was basically the medical future- the only downside is that the trial was 3 years long with 2 years of active treatment followed by a stem cell transplant.

2 YEARS??????? 2 YEARS?????? 2 YEARS OF TREATMENT?? I’LL BE 30 WHEN I EVEN GET A STEM CELL? CAN I GO TO GRAD SCHOOL? CAN I MOVE UP IN MY CAREER? AM I PUTTING MY LIFE ON HOLD FOR 2+ YEARS??? 

These were the questions I asked and were the things that really upset me. I’ve been looking at my cancer as an inconvenience that I want to knock out and move past! 2 years meant it would be a constant reminder of being sick, not being able to live my full life, and always having this baggage. I went through all stages of grief within 2 hours but ended up accepting it and moving forward. I wanted the immunotherapy and I was trying to figure out how I could still live my best life while going through this.

SO, I decided to sign up to volunteer with a local literacy program, teaching English to refugees, and I was hired to start teaching ESL online to young learners in China (for some extra cash). I had put all of these things on hold while going through chemo, and they were now things I’d be allowed to do during the new treatment. My first cycle of immunotherapy was really good. I had an awesome infusion nurse and no side effects during treatment. I felt a little hungover when I was at work the next day but it felt NOTHING like what chemo felt like. 

I was making things work! I was volunteering, taking on new projects at work, hanging out with my friends, going to conferences, and living my normal life. I was really accepting that I’d be able to do this for 2 years, I could totally go to school and go through treatment. I could make this work.

BUT THEN.....

I had an allergic reaction. About 2 weeks after I had my first treatment I got an incredibly itchy rash on my hands, lips, and the inside of my mouth. My tongue was swollen and I was worried. I was taking Benadryl but it wasn’t really helping so I called the advice nurse. She told me that I needed to go to the emergency room immediately sooooo my mom drove me over to the ER at Kaiser. I was literally fine, just itchy and swollen. I was actually pretty mad that I had to pay $100 for literally nothing. 

I was examined by the ER doctor, told her my background and what was happening with the immunotherapy. I told her that I knew I wasn’t in or going in to anaphylaxis and she agreed. She saw that my oxygen levels were good and sent me back to get observed. The nurse was giving me Benadryl because Kaiser was too afraid to give me a steroid in case it would interfere with the trial. So... I sat there while Kaiser gave me the same drugs I was taking at home. They eventually let me leave because I told them I had an appointment at Stanford in 2 days.

Reflecting back, I’m pretty grateful I didn’t die in my sleep. I choked on my swollen tongue 2 nights in a row... so that’s great. 

When I got to Stanford they saw my reaction and immediately gave me a steroid. They were super concerned about what happened and pretty pissed that Kaiser didn’t give me steroids in the ER. This reaction unfortunately disqualified me from the trial because they didn’t want to risk what would happen next. I guess the tongue swelling is an initial sign that my airways could close in the future and apparently everyone wants me to breathe. Whatever. 

I was pulled from the trial.... RIGHT WHEN I WAS LEARNING HOW TO LIVE MY LIFE THROUGH TREATMENT. Another rough moment BUT at least I still have options that can get me disease free.

So, back to Kaiser we went! The oncologist told me we’d go to the standard plan that all patients would do if they didn’t have access to a clinical trial. I’d start a chemo program called ICE (which is 3 day in patient chemo), and then move over to Stanford for the stem cell. The bright spot about doing things this way is that it will be a shorter process. I’m not pumped about the chemicals and radiation in my body, and I feel like cancer is certainly in my long-term future but this should get me disease free now. I’m so hopeful that this plan goes smoothly and successfully and that medical research continues to flourish.

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Surgical Summer

So, as many of you know summer is my ABSOLUTE CRAZIEST BUSIEST time for work. I work in Outdoor Program and I manage many different summer camps from Gilroy alllllllllllllllllllllllll the way to Humboldt. I work crazy days, nights, all weekends, and usually spend several days at our council sponsored camps. 

Summer was extra busy because I had a few procedures!

The first surgery I was scheduled for was a surgical biopsy, Dr. Butt (the best surgeon in town!!) had to cut me open again and remove a lymph node, have the pathologist look at it and then give me my diagnosis. 

UNFORTUNATELY.... Dr. Butt removed scar tissue only. The lump she took out wasn’t cancer (if you can recall from my original story, I have both non cancerous nodules and cancer tumors all up in my neck. Makes it really hard to diagnose me!). Looks like I’d need yet ANOTHER surgery, but this time Dr. Butt was like, “How about we save you one surgery and just remove your goiter while we get the lymph node?” and I was like, “cool, okay, yeah.” Actually I wasn’t that cool at all. I’m sure I cried about something and got really nervous, but then excited that we were getting this done now rather than ANOTHER surgery after the stem cell. 

While I was waiting to be scheduled for that surgery it was time to get the egg freezing process started. Thanks to my beyond amazing, friends, family, co workers, acquaintances, and strangers my GoFundMe raised almost enough money for me to freeze my eggs. 

Fertility is such a crazy thing. It’s so emotional and scary, and expensive. I never thought I would be put in this position or told I’m infertile, especially due to cancer. Luckily, the fertility team I was paired with was truly amazing. Dr. Harris is an incredible human being who made me feel like things would be okay. He was calm, positive, professional, and never made me feel stupid for my concerns. He was supportive and I don’t think I could have ever asked for a better doctor through this scary experience. Chemo is horrible but the process of freezing my eggs was 46670285290584978960x harder. I’m not sure if it’s the emotional aspect or being faced with questions I wasn’t ready to answer at this point in my life but it hit me really hard and it’s still difficult to think about my future fertility. 

I was told that freezing my eggs would cost $8500 and that one of my drugs would be covered because I’m only freezing due to cancer. My treatment cost around $13,000. None of my drugs were covered because I didn’t qualify for the free ones. I had to be 6 months out of chemo to be considered for the free drug and unfortunately I wasn’t, and I didn’t have time to wait... my tumors were growing!! It was a really, really shitty situation. My GoFundMe was strong, and I had some savings but man, how is ANYONE supposed to be able to afford that???? I was 27 years old working for a non profit! This was so upsetting because I felt like nothing was working in my favor, another set back, did I even want to freeze? Do I even want children? It made me ask really difficult questions and just face an unfortunate reality. 

I did get the procedure. I paid for the drugs, did self injections, took pills, and had the procedure done (very quick and easy!!). We managed to freeze a few eggs, not the quantity I would have liked, but I do still have a chance at having a biological child. Thank you to all of you who donated. I would NOT have this opportunity if it wasn’t for your kindness and generosity. I still plan on making everyone friendship bracelets when I live in the hospital for a month. 

Summer was emotional BUT the up side was that I wasn’t in active treatment! Summer was awesome because I felt good, I was working out, hiking, playing with kids again, seeing my friends, and alsoooooooooo I got to drink! It was so nice to feel normal and I DEFINITELY took advantage of that! :) 

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Spring Forward!

March 2016 was pretty exciting!

March 7th was my last day of ABVD chemo!!!!! Obviously I was PUMPED about that! I also moved into a swank new apartment with one of my best friends, and returned to working full time at the office. Things were looking up and I was excited to get my life back. 

WOMP WOMPPPPPPPPPP

March 7th was my last chemo day BUT I needed to get another PET scan to make sure I was disease free and my cancer was gone. My first PET was in April and my results were not definitive. My oncologist told me that there were some “hot spots” on my scan and that it could be due to inflammation but it also could be due to cancer.

I had another PET scan in May and it showed that the cancer had already returned. My mom and I met with my oncologist and she told me about what my future would look like. Because my cancer had returned so quickly I was told that I would need a bone marrow transplant. For me as a Lymphoma patient it looks a little different than the BMTs you’ve maybe heard about before. I’ll be going through more chemo to get me to a remission state, my cells will be harvested, I’ll have MORE chemo (the most intense), and then infuse my cells back into me. It’s nice that I get to use my own cells because my body is more inclined to accept them. The only cool thing about this (other than science) is that I’d get to do the transplant at Stanford. I’m also lucky enough to have an acquaintance who went through the process last year. 

This new plan meant a lot of things needed to happen in my life.

1. I still needed to have a surgical biopsy to confirm that I have Hodgkin’s Lymphoma

2. Freezing my eggs. The stem cell chemo will make me infertile. 

3. More chemo :( 

The oncologist told me that I’d start a light steroid based chemo for 3 months once we confirmed my diagnosis and my eggs were frozen. There was a lot that needed to be done! 

Through this terrible and horrific news I learned how to compartmentalize, I’m not really sure if that’s a good or bad thing BUT it made me take things step by step, procedure by procedure, and only worry about what’s currently in front of me. This has beed a really good tactic for me just because there are SO MANY major procedures/treatments in my future. It’s nice to take things one step at a time, one VICTORY at a time. 

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Winter is Coming

We’re going to go ahead and start with Winter 2015. Last Winter was probably one of the hardest periods in my life. I thought that I was going to have 4 sessions of my ABVD chemo and then be able to go back to work! I thought that I’d simply have to have some radiation but I’d be able to get back to my regular life and move on from cancer. 

I.WAS.WRONG

After 3 months of chemo I had another PET scan to essentially check on how the chemotherapy was working. We met with my oncologist, she showed us the image and there were no longer little black spots on my neck (little black spots indicate cancer). I was very hesitant but excited to see that chemo was working. The oncologist seemed pleased but then told me I would need to continue with 6 more months of chemo. I FLIPPED OUT. I was so hurt, discouraged, upset, and just an emotional wreck. I suppose I must have been crying a lot because my oncologist was pretty uncomfortable. I thought I’d be ending treatment and moving on in December, my new final date was March 7th. 6 months seemed like FOREVER in my mind.

I think one of my larger struggles is adapting to changes in my treatment plan. I get so focused on one date, one treatment, and one plan that the hardest thing to hear is a change to it. But, I persevere... I mean... there isn’t really another option.

Because I only had 3 months of disability I had to go back to work 30 hrs/wk to keep my insurance. Going through treatment and working from home was really hard. The chemo made me incredibly emotional and it was really difficult to manage tough situations at work when also going through chemo. I’m grateful that my employer was willing to accommodate me (and still is!!!) but last year was the hardest time in my life. 

I managed to tolerate chemo well, ABVD was very cyclical and I could manage to predict how I would feel, and what I would struggle with through each cycle. I’m grateful for that at least. I had a routine in place to combat my nausea, and another to help keep my digestion moving. I was able to see my friends the second week between treatment and have some normal activities (as long as I was careful). I also had incredible support. I have amazing friends, a great family, and an excellent community at work/volunteers I work with. There are tons of studies on community and survivorship so I’m grateful that that is definitely in my favor! 

Last Winter was horrible, but I believe it’s made me a stronger person.

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Hello, It’s Me.

Yikes, so I know I dropped the ball on my blog BIG time, BUT I’m ready to get back to it! A LOT has happened in the past year so I’m going to spend this alarming rainy Sunday trying to catch up. To do this, I will be splitting the past year of my life into seasons, much like what Netflix did with the Gilmore Girls revival.

Sit back, relax, get your glasses and enjoy my awkward internet storytelling. Please remember to read this text in my voice, it’s SO much betttterrrrrrrrrr that way. Also, if you read something and are like,  “How could she possibly even say something like that?” It’s probably sarcastic, sometimes you have to use humor to deal with pain! :) 

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A Little More Chemotional

My second round of chemo was on Monday and it definitely hit me a little bit harder, I think I was essentially in my bed for 48 hours after, I spent most of the time taking my nausea medicine, then sleeping then waking up to take my medicine again, it definitely put me in a whirl and I lost track of time. I’ve been a lot more tired this time around but also WAY more emotional, I cried about Kung Pao Chicken, like my feelings were deeply hurt about it, everything has been difficult for me to process (sorry mom). I’m feeling better and I’m going to stop taking my nausea medication today because I’m feeling fine. That’s the bright spot I guess, I haven’t been throwing up. I’m hoping from today until my next round of chemo that things are a little more sunny, my back is feeling better, my tummy is under control and i think I can get back to normal if I don’t have to take any pills. 

Oh, a story! Before Chemo on Monday I went to a workshop called “Look Good, Feel Better” it was sponsored my the American Cancer Association. It was a workshop on how to do your hair and make up while dealing with hair loss and skin changes. There were only four women in the class but it was really nice to meet some other women going through treatment, just like me. These women were significantly older than me and also further along in their chemo but to immediately connect because we all have something in common was crazy and, really nice. I would like to meet more people my age who are sick because even sick adults look at me like I’m their child and get really sad, but I’m still so lucky, my body is handling it the best way it can, I still have hair and other than being gross because I haven’t showered in a few days I honestly do look like myself still. I’m excited to use some of the products I got in my bag of fun stuff and I’m so excited that I learned how to draw on eyebrows! I’m not sure if I’ll actually do it once the time comes because my eyebrows are so thick and black that I don’t think they’d look great drawn on, but I’ll definitely try it! And hey, what a skill to have? 

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Last Week Was Great!

Last week went really well, I was feeling great, got to see the ocean, go to pumpkin patches, hang out with my homies who had their flu shots (grandma and great aunt Gerry, I’m looking at you!) as well as have dinner with a couple people who didn’t have their flu shot *GASP* (I decided it was okay because I got my blood counts back that day and they were looking pretty good.) I even started to drive again for the first time in a couple weeks to get my blood drawn and go to the DMV (which didn’t actually happen since 54 people were already in line in front of me before it even opened). It was nice to feel normal and do normal things, I felt incredibly lucky to get to do a couple things I was really looking forward to doing but was worried about due to health. 

The blood draw was way better than I thought, because I have the port it’s easier for everything to be accessed from it, I still had the option to go to get my blood drawn at the lab in Kaiser but that would be through my poor sad tiny veins, with the port I get my blood drawn in the oncology department. It takes about the same amount of time but so far, only 1 poke! It’s been awesome, plus the oncology team at Kaiser has been so, so great. I’m not sure why I’ve had all of this anxiety about the port but I was a WRECK right before my draw I put a mask on, I got reclined back in my chair and tears started falling out the side of my face, I told the nurse not to worry about it, and that I really just like being a drama queen, he was cool and sprayed me with extra numbing stuff. He poked me, I felt nothing, he took my blood like a nurse vampire and I was all done! It was wondrous and easy and I still don’t want to do it ever again but I have like 40 more trips in my future. I always have port draws two days before chemo which means I get to go through chemo again on Monday, ick!

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If you have a flu shot... we can hang out.

Just sayin’. 

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My port and getting chemo and me smiling because I’m not barfing yet! 

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Chemo: Not having to wear a bra for 2 months

Monday was a crazy day, I was coming off a fantabulous wedding weekend for one of my best friends (Holla at Mrs. Kraynick-Baker!), getting ready for my week and trying to eat some favorite foods before I feel like barfing all the time

Monday morning I had to get a minor surgery to get my port installed. The port is this weird device that gets put under my skin connected to a catheter that goes to a big ole vein in my neck so chemo can be distributed throughout my body faster. I had no option with this procedure, I have incredibly small, tiny, narrow, deep veins. They’re like love because the people at the hospital tell me “I can feel it but I can’t see it.” isn’t that sweet? I got on board with the port after 3 nurses poked me 7 times, ruptured a vein over the course of 45 minutes and then rescheduled me because they couldn’t stick me, nonetheless I was super scared to have this done, I’m not exactly sure why but over the weekend I was more concerned with the port procedure than chemo.

The procedure was relatively quick, I had a great team of nurses and a doctor my mom had a crush on. They were super nice and it didn’t hurt as much as I thought it would. I was super alert after the procedure and my mom and I hung out at the hospital because I had chemo a few hours later and was really afraid to go outside because they left the port accessed. My thought was that something was going to fly into my port, go straight to my heart, and kill me. Rational thinking, I know

Chemo wasn’t as bad as I was expecting. It’s certainly not fun timez but I wasn’t allergic to any of the four drugs injected in me and my nurse was really on top of things. It was about 4 hours long and it was hard to do much to distract myself because the first 2 drugs the nurse sits and physically pushes them in so someone is always there. I could taste some of it but overall it didn’t make me too nauseous during the actual treatment. 

I had tonnnnnnnnnnnnnnnnnns of meds to take home that kept my tummy under control and I have felt pretty good since, I don’t normally take any pills so it has been weird to all of a sudden injest 6 different types of meds. I haven't had to take any nausea medication over the past two days which has been cool but also makes me think that chemo isn’t working. I’m supposed to lose my hair before the 19th but it hasn’t started yet, I think that will be the next traumatic thing that happens, I really do love my hair. On Sunday my brother cut off my pony tail with meat scissors from the kitchen, pretty hilarious. There’s enough hair to donate, which is lovely. I’ve done locks of love before but have heard some shady stuff about the organization, if you have any other recommendations of who I can donate it to, let me know. I wanted to keep it for myself but making a wig out of your own hair costs $2,000. Cancer is expensive.

So far, the most painful part of this experience has been my back. I threw it out on Tuesday and I was unable to walk, it was terrible and hurt so so much. I’m not 100% yet but I expect to keep improving over the next few days. I have a check in with my oncologist tomorrow and I hope she can put my fears of chemo not working to rest!

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Kat got married last Saturday!!

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A Background of What’s Happening:

If you already know how I found out I had cancer feel free to skip ahead to another post :)

If you’re reading this you probs got the link of my Facebook page and know that I was diagnosed with Stage 2 Unfavorable Hodgkin’s Lymphoma a month ago.

This weird neck health stuff started about 6 months ago. I was still working for JST in Berkeley and I noticed that my neck was a little swollen. I thought it was kind of funny and made every I knew touch it. I figured it was a thyroid thing and went straight to Google. The lump on my neck kept swelling but Google told me that Thyroid tumors and Thyroid cancer were the easiest to deal with so I stalled until my mom made me go to the doctor (shout out to Nancy!).

I saw my primary physician and she was like, “Uhhhhh…. this looks CRAY, I’m going to refer you to someone else to biopsy this thing.” The doctors biopsied about 12 different samples of my neck (primarily around my thyroid) and the results of the lumps came back benign (cancer free). I had a super scary MRI where the doctors found that I have this GIANT mass in my chest. It’s called a Goiter (gross name, right?) and it’s like… the whole upper half of my body… don’t worry thought, that’s not the cancer part, I spoke with a head and neck surgeon and we talked about having surgery where they open up my chest and rip out the goiter as if it’s my beating heart. This was all news before summer started, I had just switched jobs at Girl Scouts and was worried that it was going to put a huge strain on my new job because my job is incredibly active in the summer season. The surgeon told me we could wait until after summer was over because I’d still need to do tests, consultations and I’d need a 2 week recovery time.

I had an awesome summer building relationships with volunteers and getting to see incredible program run for girls at summer camp (my job rocks) but I did notice that my neck was getting thicker. I’m a big girl, but I’ve always had a pretty good neck so I definitely noticed the difference in the mirror everyday. Once summer started to slow down I visited a thoracic surgeon (who was super dreamy) and told him the same story I’m telling you but also included the lumps that seemed to be growing or moving on the left side of my neck (these had already been biopsied and attached to thyroid cells in origin so we all thought the lumps were in the same family). The expression on Dr. Moskovitz’s face was indescribable, he wouldn’t say it but looking at him I could tell he thought I had cancer. He spoke with my neck surgeon which lead to my last biopsy and a CT scan (wayyyyyy less scary than an MRI). I got the results on the 2nd with the news that the cells looked cancerous, met with my surgeon on the 4th to schedule an excision biopsy (which is the sweet scar on the left side of my neck) and I was in surgery on the 8th. By that Friday the 11th (1 month ago!) I was given the news. Once we found out I had cancer I got to do a pet scan which shows where the cancer is and what stage it’s at. I’m fortunate enough that my cancer is above my diaphragm but it is on both sides of my body. It’s only located in my neck but so are all my thyroid nodules!! There is so much stuff going on in that region, no wonder it was so hard to breathe! I just thought I was getting more and more out of shape (which is also partly true) but now I have an actual reason for my slothness… kind of, jk, no excuses. It’s a bummer that once I’m healed from cancer I still have to have my chest opened and the goiter removed, WOMP WOMP, I’ll cross that bridge when I get to it.

The type of cancer I have is very treatable it’s just so crazy to put my life on hold for… who knows how long? I’ve already had to give up really cool work opportunities and it makes me really sad to know that i’m stunted professionally for now. I do want to use this time to better myself as a human being; practice meditation, yoga, read, study for my FSOT and even work on grad school applications (given I have good days between chemo). I’m trying my best to stay positive and I’m so grateful and floored by the amount of support I’m getting from friends, family, acquaintances, everyone really. Thank you so much, your positive thoughts my way have honestly made a huge difference and I am eternally grateful. And I’m so thankful for those of you I’ve spoken with who have had similar experiences, knowledge is power and right now everything is unknown so it’s really comforting to hear how other people got through it.

it’s been a crazy month between working, worrying, healing, and one of my best friends weddings!! (that was the bright rainbow unicorn spot of the month :)) But I started Chemo on Monday, October 5th and I’ll be doing 4 rounds of it over 8 weeks. Once that’s done I’ll get another Pet Scan to see where the cancer is and then do more chemo and/or radiation. Thanks again to everyone who has reached out. I’m already missing human contact! Love you all more than you know.