Scan Results

The impressions of the radiologist are as follows:

1. Compared to PET/CT from 4/14/2026 stable size with reduced uptake of
the anterior mediastinal mass.
2. No new site of metabolically active disease.

This is just saying that the mass in my chest has decreased activity (although the activity isn’t zero). My doctor was very encouraged by these results and called it a “complete metabolic response”! YAY.

Next Steps

We’ll continue monitoring my bloodwork for the next 5 years, and my doctor encouraged me to get my chemo port removed! Apparently there are mixed opinions about monitoring with PET scans versus bloodwork for Hodgkin’s, because PET scans expose you to radioactivity which could have its own effects. My doctor encouraged me to do the “alcohol test” (see if I have pain from drinking alcohol) here and there, but said that I should probably not test it every day :). I’ll have to keep an eye on my heart health because of the type of chemo that I got, but he said that based on my age, I shouldn’t need to worry about that for another 10 years or so.

I’ll still be immunocompromised for another few months, but the risk will get lower with time. The important thing is that my neutrophils have returned to the normal range, so the risks from infections are not as big of a concern and my dietary restrictions have lifted. My doctor said that my main concern is exposure to viruses from being around people. That said, he said that I can even do things like hang out inside with my niece and nephew and go to movies as long as I wear a mask! I didn’t expect that to happen so soon so that was very exciting news.

Cancer Playlist - Part 5

• That’s Life - Frank Sinatra

• My Way - Frank Sinatra

• Closer to Fine - Indigo Girls

• Bless the Telephone - Labi Siffre

• Tired of Being Alone - Al Green

• A Month Or Two - Odie Leigh

• I’m Going Home - Tim Curry in Rocky Horror

Bravery

For my entire diagnosis process and all of treatment, I had a very negative reaction to people calling me brave. I didn’t feel like I had an ounce of control in the situation, so how could I even be brave if I had no choice? But recently I looked up the definition of bravery. The definition of bravery in Miriam Webster is “having or showing mental or moral strength to face danger, fear, or difficulty”. This definition came as a shock to me, because I thought that bravery was choosing to do something even though you’re afraid to do it.

I think deep down my negative reaction was actually coming from not wanting to acknowledge that this was a situation that required bravery. It seemed nice to think that everyone else was being dramatic and that what was happening to me wasn’t scary at all. But getting cancer has felt like the emotional equivalent of someone grabbing me by the shoulders and shaking me. I’ve just been trying to make it through this time and I haven’t really felt capable of engaging deeply with some of the more complicated emotional realities of having a cancer diagnosis. After my final infusion, and especially after these scan results came back, I have started to feel more clarity about my emotions.

At the coast a couple weeks ago, I bought this weird driftwood sculpture of a dog wearing a shirt that says “Be Brave”. I had been thinking about that word, brave, for the last 8 months since finding out about the cancer, but for whatever reason when I looked at the sculpture, I realized that I have been entirely overthinking it and that I am brave! I’m proud of myself and I’m brave! I think now that I have gotten past active treatment, I don’t find it as scary to think about being brave. I hung up the driftwood sculpture right above my front door to remind myself to be brave (and because that is the only sliver of wall in my house that hasn’t already been decorated).

Thanks for Reading

I have really appreciated everyone who kept up with my ramblings during chemo. This blog started as a way to avoid having to text everyone separately when I had updates, but I quickly realized how therapeutic writing can be. While I was in the waiting room for my last infusion, I noticed a flyer for an expressive writing group for young adult cancer survivors and I decided to try it out. I’ve only been to a few sessions, but it has already become one of my favorite parts of the week. I had a very satisfying full-circle moment when I met a Hodgkin’s patient in my writing group who was only 2 weeks into treatment (hi Clara!!) and I got to send her my blog.

I hope I won’t have many more “health updates” for the time being, but if I do, I’ll certainly post them here. Thank you for reading!

What’s Next

For the next few days, I expect to be recovering from this last infusion. Recently, that just means languishing on the couch for a few days and trying to ignore the nausea. Hopefully after that last few days, I’ll feel sort of normal again and I can start my recovery.

My oncologist told me to expect my neutrophils (the white cells that fight infection) to recover around a few weeks after my last infusion. That will mean my dietary restrictions will lift and I won’t have to worry as much about infections! However, he said that I’ll still be immunocompromised and I will specifically be vulnerable to viruses for the next 3-6 months. That means that I’ll still have to avoid crowds and sick people. I’m still not exactly sure how I’ll know when I’m allowed to do that stuff again but I can’t wait!

My oncologist also told me that a lot of people think time will heal after they finish chemo, but that recovery is actually an active process. You have to build back your muscle because chemo diminishes muscle mass. On the bright side, I really enjoy strength training! Unfortunately, my favorite kettle bell gym is probably not well ventilated enough for me to go while I’m still immunocompromised. I’ll have to find a new gym!

On August 17, I’ll get another PET scan to see whether there is any residual disease. The last PET scan I got was around 2 months into treatment, and the results were good but I wasn’t in complete remission. I’m feeling more anxious about this scan, because the results could actually have an impact on my treatment plan. I talked through the possible scenarios with my doctor and he gave the following plan:

• If there is no evidence of disease, YAY I’m in remission! (This is likely)

• If there is still some activity, then we’ll wait 6-8 weeks and get another PET scan.

  • Note: PET scans can show activity from things like inflammation or infections, so it’s always possible that a positive PET result isn’t cancer. That’s why you always have to biopsy to confirm positive PET results.

  • If that second PET scan shows no activity, then I’m in remission! Yay!

  • If that second PET scan shows the same or more activity as the one I’m getting in August, then it would suggest that there is still some disease. That would trigger a biopsy (this time it would be the more invasive biopsy), and then if the biopsy found evidence of cancer, I would have to get more treatment.

Let’s all cross our fingers that I’m in complete remission!

Remission vs. Cured

Before having cancer, I found some of the terminology around being “cured” confusing. I would hear words like “remission”, “undetectable”, “cured”, and “no evidence of disease (NED)” and wonder what the difference was between all of them. If you also get confused by these distinctions, allow me to clarify! (Source)

• Remission: Remission is any reduction in signs or symptoms of disease. Remission can be “partial” or “complete”. Complete remission is when there are no signs of disease at all. This doesn’t guarantee that there isn’t any disease, it just means that there are no signs of it.

  • Note: The way that you detect the cancer is different for different types of cancer. For Hodgkin’s, typically you use a PET scan or a biopsy to detect residual disease. For some other cancers, blood tests are sufficient to signal that the cancer is mostly gone.

• No evidence of disease (NED): This is the same as saying “complete remission”.

• Undetectable: Same as “complete remission” as well.

• Cured: This is a tricky one, and I found it confusing that “complete remission” or “undetectable” weren’t the same as being cured. The problem with saying “cured” is that it’s possible for cancer to be in complete remission and then come back. This is because scans can’t detect every single cancer cell in your body, so it’s always possible that there is some very small amount of cancer remaining. Relapses pretty much always happen in the first five years after remission (this number sometimes varies depending on the type of cancer). After five years of clear scans, often the cancer is considered to be “cured”!

I really wish that this upcoming scan could provide some magic guarantee that I’m “cured”, but unfortunately I’ll have to live with the uncertainty for years. I’ve been thinking about this a lot. I decided that if I were to suffer a relapse in, say, two years, and I have to go through chemo again, I would be so pissed at myself if I didn’t have the time of my life for those two years! So I’m trying to focus on enjoying life while I’m healthy instead of thinking too much about the possibility of a relapse.

Coast Trip

Speaking of enjoying life, I went to the Oregon coast to celebrate my last infusion with Abby and her family, Tyler and his parents, and my mom! We went to Newport, Oregon. This photo and video pretty much sums up the vibes of the trip:

We had a lot of fun going to the big aquarium in Newport and having lots of seafood. It was a great distraction from my ever-increasing impatience to finish treatment!

Ringing The Bell

I had some awareness of ringing the bell before I was diagnosed, but I didn’t really know that much about it. For anyone that doesn’t know, when you finish your last chemo infusion, you get to ring a special bell! In the last month or so, I started getting really excited to ring the bell. It just seemed like such a satisfying way to finish a long and difficult journey.

I got a tiny bit fixated on the bell ringing. I started wanting to wear the perfect outfit (see below), and invite a lot of people (unfortunately my niece and nephew weren’t allowed to attend), and pick the perfect song to play (Ring My Bell by Anita Ward), and even plan out the way that I’d ring it. I love celebrating in general, and I have a lot of time to think right now, so it’s just become the ultimate celebration for me to plan.

Cancer Playlist - Part 4

I can’t stop thinking of new songs!

• Big Girls Don’t Cry - Frankie Valli

• Big Girls Don’t Cry (Personal) - Fergie

• Being Alive from Company by Steven Sondheim

• Always Look on the Bright Side of Life from Monty Python

• Move On Up - Curtis Mayfield

Thanks for Reading

Expect another update in a few weeks after I discuss my PET scan results with my doctor! Cross your fingers and toes that the results are good :D

Recently I realized that the first part of this old viral video kind of sums up how doctors talk to you when you’re neutropenic:

Ode to Kam

[Recommended listening for this section is “Come On Up To The House” by Tom Waits]

My first real encounter with cancer was with my family friend Kam, who passed in 2019 from prostate cancer. Kam had one of the coolest jobs in the world: movie critic. He started what has become a lifelong love of film for me by showing me a ton of movies as a kid. Kam would host early screenings of movies and invite all of his friends. He would constantly give away promotional material that studios sent him for new movies, so he and a lot of people in his circle of friends would often wear T-shirts with the titles of movies that had come out in the past few years (sometimes movies that were not very good!). He was often invited to interview famous actors, and when I was in eighth grade, he invited me and my French exchange student Clem to interview the boys who starred in “Diary of a Wimpy Kid”. They were our exact age! We felt so grown up and proud of doing that interview. Kam and I were close; I actually brought him instead of either of my parents for career day at school in fourth grade. He brought all these DVDs and promo materials and handed them out and he (and by proxy, me) definitely “won” career day by far.

Toward the end of high school, like with all adults in my life at that time, I created some distance. I started wanting to have my own identity and developed opinions about everything that an opinion could be developed on. I graduated high school in 2016, and around that time a couple of things happened: I realized that Kam and I had very different political views, and Kam got diagnosed with terminal prostate cancer.

I really struggled with his politics. At first, I tried to plead with him to change his mind. I remember the last time I saw him before I left for college, we talked for hours about politics and we both really wanted to get to the bottom of it: how could we feel so differently? I left that day feeling proud of convincing him to see my side, but while I was away at school I kept seeing more photos of him wearing political merchandise that suggested he wasn’t actually convinced. I found it hard to feel close to him when his opinions were so different from mine.

At the same time, I started being more aware of the decline of his health. The whole time I had known him, he had had a beautiful huge red Afro, and it was hard to watch him lose it. He lost weight and he looked paler than I had ever seen him. I knew that his diagnosis was terminal, but I was scared to face that as an 18 year old. I felt such a distance from him because of our political differences, and I let a lot of time pass without being close to him because of my discomfort surrounding that.

I still went to visit him, especially once he started hospice care a few years after his diagnosis. He was still completely himself until the end. He was so weak that he couldn’t even lift his arms, but he would still watch movies and my mom would sit at his bedside and type up movie reviews that he dictated to her.

I wrote Kam a letter when he started getting really sick, and I barely mentioned what was going on with his health. I wrote about some French new wave film I had watched recently and about the classes I was taking that semester. When I got back from school and visited him, he was too weak to hold a letter in his hand, so he asked me to read a letter for him. My sister’s ex-boyfriend Andrew had really connected with Kam, and even though my sister and him had broken up, Andrew wanted to reach out to Kam when he heard about his health declining. He wrote a letter to Kam pouring his heart out about how much he loved him, and wrote about everything that was important to him about their relationship. Kam looked so proud as he asked me to read the letter from Andrew.

I felt a surge of embarrassment as I realized how self centered my letter to Kam was. I thought he would want me to act normal, but he actually just wanted to talk openly about the one huge thing completely consuming his life at that time: his death. He wanted for someone to confront it and lean in and say all the things most people wish they had said before losing someone they love. I read him Andrew’s letter and we watched part of a movie he wanted to review (a documentary called “Echo in the Canyon” for anyone curious). I left with some awareness that I might not see him again before he died. I told him I loved him.

I went to New York City for a weekend with my friends even though I knew that Kam would die while I was there. I felt guilty about it at the time. I knew that I was avoiding thinking about his death. By the time his funeral happened, I was back at school. I said I couldn’t go because I was too busy at school, but I think I was really just still trying at all costs to avoid thinking about it. I was 21 when he died, and I did not know how to navigate the situation. They had his funeral at the local independent movie theater, and I heard that it was beautiful.

Years passed after Kam’s death, and I thought of him often but still couldn’t really face the fact that he was gone. A couple of years ago, I read Dry by Augusten Burroughs. [Spoiler ahead] Dry is a memoir, and Augusten’s ex who he remained very close with dies from complications of AIDS. I saw so much of myself in how Augusten acted when he knew that his loved one was dying. He avoided thinking about it because it scared him. When his friend dies, he spirals internally about not spending enough time with him at the end of his life.

The way that Augusten wrote about his experience felt so cathartic to me relative to my experience with Kam. After finishing the book, I suddenly became overwhelmed by how sad I felt about losing Kam. I cried for hours about how much I missed him and wished I could see him again. I felt so guilty for letting politics get in the way of spending my precious last years with Kam. I felt so happy that I had known him. I felt all of the things that I should’ve felt before he died and right when he died. I felt everything that I had been avoiding so fervently that I didn’t even know it was there.

Now, as I’m going through chemo, I’ve been thinking about Kam a lot and what he went through in the last few years of his life. When I talk to Sue, his wife who I am still very close with, she mentions Kam when I tell her about chemo. I like to think about how Kam and I would probably be bonding about all the cancer stuff right now if he had survived. I love him and I miss him a lot. I wish we could go to the movies together one more time.

Cancer Playlist - Part 3 (The ones I forgot to add to the other playlists)

I’ll let you guess which playlist each song belongs on: happy or moody! I keep thinking of more songs that belong on my cancer playlists so I thought I’d include a part 3 with the ones I’ve been adding. Enjoy!

• Bridge Over Troubled Water - Simon and Garfunkel

• O-o-h Child - The Five Stairsteps

• Tubthumping - Chumbawamba

• When I Get Low I Get High - Ella Fitzgerald

• You Can’t Always Get What You Want - The Rolling Stones

• The Spark - Kabin Crew, Disdoonvarna Crew

• Les Fleurs - Minnie Riperton

• Get Me Away from Here, I’m Dying - Belle and Sebastian

• Trampoline - Kero Kero Bonito

• A Lot’s Gonna Change - Weyes Blood

• I Am Not My Hair - India Arie

Enchanted Forest

My sister and her family and Tyler and I went to Enchanted Forest this weekend! We joked that it was my “Make A Wish”. Enchanted Forest is a vintage theme park started in 1971 by Roger Tofte. He had quite the vision and I could only think of one other time in my adult life that I had been as giddy as I was at Enchanted Forest. (The other time was when I saw “The Wiz” for the first time LOL). It sort of scared my nephew but in the end he told me he had fun! I took lots of photos on Tyler’s camera:

Thanks for Reading

I saw a cancer patient online make a joke about how they would wish cancer on their worst enemy, because maybe it would help build character. I have had enough character building for a while! Maybe I can take a break from character building until the end of this year?

Hope everyone is staying cool! I am trying to start going swimming with my niece and nephew.

P.S. Here’s a timer photo of Tyler and I at my chemo infusion! For the uninitiated, I’m holding a vomit bag. In hospitals, they call it an emesis bag. Count yourself as lucky if you don’t know that term!

Victoria Visit

Victoria visited for a long weekend and I actually had a decent amount of energy, so I had a great time hanging out with them and doing stuff around Portland. My childhood BFF Billy also happened to be visiting Portland with their siblings, so I got to hang out with all of them and catch up, which was very fun! I haven’t spent a lot of time in a group of people since starting treatment, and I’ve been missing it.

Victoria and I went to a neighborhood-wide yard sale in a fancy neighborhood which was basically Christmas for me. We also went to a Solstice event at the Rhododendron Garden and saw a kids puppet show there with my niece and nephew. The puppeteer was not our favorite LOL and he really scared my nephew. We spent a lot of time with my sister and her kids which was fun because Victoria gets along incredibly well with my niece and nephew. On Monday, we went to the coast and saw Haystack Rock and walked around in Cannon Beach. I was so happy that I had enough energy to do all of that! We had a lot of fun this weekend <3

Insignificant Cancer Grievances

When I talk about how things are going with me, I like to keep a balance of staying positive while trying not to sugarcoat the experience. There are a lot of obviously terrible things about cancer and chemotherapy: persistent nausea and vomiting; being severely immunocompromised; the non-zero chance of death. But there are also a lot of little annoying things that I didn’t expect to experience going into chemo, and that’s what this section is about.

I was surprised that I didn’t receive information about dietary restrictions related to being neutropenic (low white blood cells, i.e. being immunocompromised) until I asked. My doctor “recommends against kimchi or any other fermented foods during active treatment and for about 1 month after while your immune systems recovers. He also recommends against raw sushi, unpasteurized/raw milk, probiotic yogurt (KEFIR, Activia)”. If you look up neutropenic dietary restrictions, a lot of cancer centers actually have much longer lists of restrictions that include some of my favorite foods! Sacrificing sushi for 6 months is not the end of the world but it’s pretty annoying.

Early on in treatment my nose starting being runny all the time and it has not stopped for months. From what I hear, a big part of that might be because I lost a lot of my nose hairs. I am constantly having to wipe my nose and I’m tired of it!

Another grievance I had is that a couple months ago, I started having dark eyelids because of the anemia (see photo below). Sometimes I look like I’m wearing eye shadow. I started wearing concealer sometimes because it’s just one more way that my appearance has changed and I’m kind of struggling with it.

I do like having a port because it makes getting an iv much faster and easier, but my port juts out in a way that means it’s in the way sometimes. My friend Maddie sewed me a pillow to put on my seatbelt to have some cushion between the seatbelt and my port. There are a number of other times in my day when the port gets in the way.

None of these are anything devastating, but I try to be honest about my full experience when I talk about it. Chemo affects everyone differently, but it pretty much always has some side effects.

Going Bald

As my hair continued to fall out, I started feeling more and more like I should just shave the remaining hairs so that all the hairs would be the same length. I felt attached to the idea of having hairs that had 10 stripes on them, but at a certain point I had so few hairs that I stopped even finding hairs that had all of the stripes.

I decided to glue down some of the longest striped hairs that I found on my head and frame them. I think I might order a placard on etsy for the frame. Thoughts on what the placard should say? (I also welcome other suggestions)

I was surprised by how different I looked after shaving it to the scalp, despite the fact that there was barely any hair in the sink when I finished shaving it. I looked fully bald, which felt distinct from having a buzzcut. I was a bit taken aback by how negatively I felt about the look. I thought since I liked having a buzzcut in the past that I would like the look of being bald, but I was wrong.

It didn’t help that someone in a work call sent me a photo of someone they said was my “doppleganger” and it was a middle-aged bald man. That hurt my confidence a bit. I also started feeling like being bald made me look like I have telekinesis. I feel like a lot of people in books and movies that do telekinesis are also bald? I was thinking about Eleven from Stranger Things when suddenly my nose started running, and I thought, I’m kind of like Eleven if she had a runny nose instead of a bloody nose.

I have a substantial budget for wigs from insurance, so I thought I might as well try out wearing a wig to see if I felt better that way. I went to get a wig at a place called Wigland in Portland. I liked the guy at the wig store and he helped me learn more about how wigs work. I tried on a number of wigs and finally landed on the color and style that reminded me the most of my natural hair. My hair color isn’t quite possible to get as a wig, but I found something that felt sort of close. My hair also has more texture than a wig would normally have, so that part feels a little different from my normal hair as well. Here’s a side by side:

It’s not perfect but I don’t think most strangers would notice that it’s a wig. I tried wearing it on walks around my neighborhood, but I was surprised by how embarrassed it made me feel. I couldn’t really escape the thought that people might notice it’s a wig, which is nothing to be ashamed of but for some reason I was worried about being “found out”. It also made me sad because I had imagined that the wig would make me feel like I had my hair back, but it didn’t feel like that at all. The texture of it feels different from my natural hair, and the sensory feeling of a wig on your scalp is not pleasant. It also made me notice other ways that my face has changed, like losing a lot of my eyelashes and eyebrows.

I turned a corner with the baldness around a week after I re-shaved it and I started feeling like I look good again. I realized how much better I look when I’m confident. I can still wear outfits that I love and hold my head high! Now I’m feeling like it looks chic. That said, it’s not like I’m going to choose being bald over having hair. I’m so excited for my hair to come back. It’s actually already started growing back a bit since I re-shaved it! It’s very thin but I’m not completely bald anymore.

Chemo Pregnancy Similarities

Sometimes when I tell my sisters about chemo side effects, they tell me that they also experienced the same symptoms during pregnancy. It made me think about how similar pregnancy can be to chemo. In fact, one of the similarities is that if you google “chemo” or “pregnancy” with one of your symptoms, it probably will come back with results that sort of shrug their shoulders and say “that does sometimes happen”, because they can both cause such different symptoms for different people. That said, nausea / vomiting is the number one symptom associated with both stereotypically.

I also noticed that both affect your immune system and require dietary restrictions to avoid food borne illness. It’s not recommended to drink alcohol during either of them. Odd food cravings are also associated with both.

I think specifically my six month treatment plan has felt similar to the length of a pregnancy. I started thinking of my treatment as having trimesters: the first trimester was tough; the second trimester went quick; the last trimester you’re tired and it feels like time is moving slower than it ever has before.

There is also a forgetting of pain that I’ve heard about with child birth that I’m noticing with the pain that I experienced at the beginning of treatment. I find it hard to remember the times when I was in pain despite knowing that it was some of the worst pain I’ve experienced. I think that’s a lucky adaptive reaction to pain!

Of course chemo and pregnancy are different in many ways, but I’ve found it interesting how much overlap they have. I’m curious if anyone else has noticed this or has noticed other overlaps.

Thanks for Reading

My niece Mia invented a genius phrase to say she’s excited or happy: she’s kicking! She’ll sometimes say “I’ll kick for you” as well. Anyway, I’m kicking to finish chemo. Did I use it right, Phoebe?

I started joking about calling chemo a juice cleanse when I complain about it. Ugh, this juice cleanse is brutal! Can’t wait to finish my juice cleanse. 30 days.

P.S. Please enjoy a couple of photos of fun hats that I’ve tried on in the chemo waiting room (they always have free hats there):

Chemo Side Effects

I’ve been experiencing a feeling for the week after infusions that can only be described as gross. I could vomit at any moment, and often I am actively trying not to gag. The good thing is that it’s easy to distract myself from that feeling, so I’ve been leaning into watching movies and tv for the week after chemo and it’s really not too bad. I didn’t have the mouth pain for infusion #6 and #7, so that has felt like a win. I’ve also had some fatigue but nothing crazy. I’m still going for lots of walks and eating well. I gained another 2 pounds, so I’m about halfway back to my normal weight!

Visitors

After infusion #5 had so many side effects, my mom decided to visit for infusion #6 in case it was bad again. The side effects weren’t too bad during her visit, so we just got a lot of time to hang out and do projects around the house, which was really nice. A silver lining about this experience has been that my mom and I have spent more time together than we had in a long time. We’ve gotten to know each other in completely new ways from spending so much time together. She’s also been pampering me so much. I started joking that I should call her “Cinderelly” because she was doing so many chores around the house. I didn’t lift a finger while she was here!

My mom left right before my friend Maddie came to visit. She came with me to my chemo infusion and it was fun to show a new person what the infusion process is like. She was blown away by how personable and sweet the oncology nurses were. At one point, she asked if the nurse that accessed my port was always my nurse because we seemed so comfortable around each other. I had never met that nurse before, but I could see how she would think that. Oncology nurses always seem to know just how to act around cancer patients. They treat you like a normal person, while also understanding how big a part of your life cancer is. I do always feel at ease around them!

Otherwise, it was really nice to see an old friend and hang out. Tyler and I are still new in Portland, so we don’t get to hang out with old friends as much right now. Maddie had also never been to Portland, so it was fun to remember that it’s actually a really beautiful and nice place.

Luck

Ever since I found out that I had Hodgkin’s, I always hear that Hodgkin’s is the “luckiest” cancer to get, because the cure rate is very high. At first, I felt very annoyed every time I heard that, because it felt very unlucky to have cancer, regardless of the prognosis. Only about 0.2% of people will get Hodgkin Lymphoma in their lifetime. That seemed pretty unlucky to me. However, as I’ve gone through this process, I’ve started to think differently about luck. I’ve realized how relative luck is.

The specific pain that I experienced at the beginning of treatment is apparently pretty uncommon. My oncologist didn’t seem familiar with that particular side effect, and he said that I was having a worse go of it than most of his Hodgkin’s patients. The funny thing is that I started to feel lucky that I had gone through that, because it made everything since then feel very easy in comparison.

I’ve been reading a book called Emperor of All Maladies: A Biography of Cancer (which I highly recommend!) about cancer through the years and how people have figured out how to treat it. Hodgkin’s was actually one of the earliest cancers to be cured, only a few years after my grandfather died. As I read about the treatments (or lack thereof) through the years, I realize that I am very lucky to have been born at the time that I was. I even feel lucky that I am receiving treatment now as opposed to a few years ago, because immunotherapy is very new. And yes, now I feel very lucky to have Hodgkin’s.

Going through a tough time can help reframe what feels lucky, too. I feel lucky when I am feeling good, and when it’s sunny, and when I get a text from a loved one telling me they’ve been thinking about me. I feel very lucky that I live so close to my niece and nephew and that I’ve gotten to spend so much time with them during this experience. I guess the bar has gotten a little low for me with luck, but that feels really good right now.

Cancer Playlist Part 2 - Happy Version

I know my last playlist was moody, but I actually have mostly been listening to pretty upbeat music. I like listening to high energy songs on walks. I thought I should put together a playlist that reflects the happier sides of this experience. Some of them are high energy but I expanded it at the end to anything that felt kind of bittersweet or empowering.

• Stayin’ Alive - Bee Gees

• I Will Survive - Gloria Gaynor

• I’m Still Standing - Elton John

• I’ll Fly Away - Gillian Welch, Alison Krauss (I’m aware that this song is about death, but let’s just pretend for the sake of this playlist that it’s about flying back to New Jersey at the end of this summer)

• In My House - Mary Jane Girls

• Keep Ya Head Up - 2Pac

• Miss Butter’s Lament - Harry Nilsson

• Survival - Adult Mom

• Do Your Thing - Moondog

• Walk Like Thunder - Kimya Dawson

• Time - Angelo De Augustine

Thanks for Reading

I started having a countdown on my phone’s home screen of the number of days until my last chemo infusion. Right now I’m at 60 days. I’m trying to count down to other stuff too. In 24 days, my friend Victoria is visiting! In 5 days, I’m going to have a movie night in my yard with my friend. I have lots to look forward to.

Chemo Side Effects

The last infusion started off rough with some extreme fatigue. As soon as I started the infusion, I fell asleep and didn’t spend more than an hour awake for the following 17+ hours. I just couldn’t keep my eyes open! That hadn’t happened to me in previous infusions. I didn’t really mind the sleeping but I also generally felt pretty bad that day.

Two days later, I woke up with a gum abscess. This felt distinct from the other mouth pain that I had experienced in that it was very localized to one part of my mouth, and it felt just like the gum abscesses that I used to experience before my wisdom teeth removal. I would normally let something like that heal on its own, but given how low my white cell count is, my care team encouraged me to go to the ER because it could escalate quickly. The pain wasn’t too bad, so while spending 7+ hours in the ER was unpleasant, I wasn’t actually in terrible spirits that day. I was prescribed antibiotics for 10 days to treat the abscess and it completely resolved within a day or two.

Unfortunately, the tooth pain did return for a couple of days and then the bone pain also returned for around a day or two. I don’t think that the pain was as bad as the first two infusions, but at this point it’s a little difficult to compare them because some time has passed. As usual, I did take a lot of showers and had trouble finding relief in other ways, but I was still able to sleep so I wasn’t too worried by it. I got approval from my doctor to take ibuprofen, and I think that it helped relieve some of the pain. I felt very disappointed that the pain came back because I thought that it could’ve been gone for good. I’m still hoping that it won’t come back in future infusions but we’ll just have to see.

Just as the bone pain was resolving, I started to feel pain in my abdomen. Abdominal pain isn’t as uncommon as I’d like it to be these days because the effects of chemo on your GI tract are severe. I didn’t think too much of it but after a day I did reach out to my care team and based on the position of the pain, they recommended a proton pump inhibitor called omeprazole because they suspected that the antibiotics and the ibuprofen combined with chemo were irritating the lining of my stomach. The omeprazole seemed to do the trick, because the pain started improving after I started taking it. I’m happy because this is another tool that I can lean on if I start getting pain in that spot in the future!

My oncologist warned me that the fatigue will get worse as the treatment continues. He gave an eerie prediction: each infusion, the amount of days that I feel good before the next infusion will get smaller and smaller until it reaches zero. It didn’t feel good to hear that, but I appreciate when doctors set realistic expectations so that I can prepare myself. Hearing that made me feel even more appreciative of my good days, so when I woke up without any pain on Tuesday I had an amazing day and took long walks and ate food that I love.

Weight Loss

I have been experiencing some weight loss since starting treatment. Each infusion, they measure my weight and put it into their system, so I can actually see a chart of my weight trends every two weeks since I’ve started treatment. I lost around 10 pounds, which is cause for concern given that I didn’t have much weight to lose in the first place.

I think that the weight loss is mostly due to loss of appetite. I tend to lose my appetite when I’m stressed as well as when I’m in pain. I have also been vomiting more in the last few infusions, so that could contribute to weight loss as well.

When my parents and Tyler realized how much weight I had lost, they all sort of freaked out. I completely understand this reaction, but I also of course hate for people to worry about me. I wasn’t too worried about it myself, but I understand the importance of keeping my weight up. I started drinking more Ensure (a nutrient dense shake) especially on days when I’m not feeling up to eating much.

My dad sent me multiple boxes of a very high calorie version of Ensure called “Boost”, as well as a full chocolate cake, a large carton of ice cream, and a big bottle of chocolate syrup. He also sent multiple mac and cheese options. I also received 6 cartons of ice cream from a family friend. Tyler has gone full Italian grandma and wants nothing more than to make me food. I feel very grateful that I have people in my life that care so much!

I’m happy to report that they weighed me today and I had actually gained 2 pounds! I am making more of an active effort to keep my weight up and make sure that I’m taking in enough food per day.

Frankie Visit

One of my best friends Frankie came to visit after the last infusion! We weren’t sure how I’d be feeling given that the previous two infusions had gone better, but Frankie had specifically scheduled the visit to be there for the worst of the symptoms so that she could be helpful. Lo and behold, she was there for the worst days of my last infusion. It was both comforting and difficult for a visitor to be there for the worst of the side effects. I loved having her there and she was of course very helpful and supportive, but I also wasn’t able to spend as much actual quality time with her as I would have liked.

It was also interesting to have a new person staying in the house because she helped me see an outsider perspective of the situation. I think Tyler and I have become a bit jaded and we stopped seeing how bad it gets because it’s all relative. At one point, Frankie noticed that I hadn’t been outside in two days, and we decided to take a little walk. I was exhausted by the walk, but I was glad to have a nudge to go outside!

I was so happy for Frankie to visit, and it helped me realize how lucky I am to have such supportive friends. One positive from this kind of experience is that (if you’re lucky) people in your life show you how much they care.

My Mental State - Part 2

Now that I’m halfway through treatment, I thought I’d revisit the question of how I’m doing because I have gone through a lot since I started writing this blog! I want to be clear that my experience of cancer is not going to be the same as anyone else’s experience because everyone has a different prognosis and different side effects. I personally think that I would be feeling worse mentally if my prognosis were worse.

For a while now, I’ve prided myself on having a high pain tolerance, and not being scared of any medical procedures or going to the doctor. This experience has changed that completely. I don’t think that I had experienced the kind of indefinite pain that the mouth pain caused, and I realized that my pain tolerance is much lower for long-lasting pain like that. I also dread getting my port accessed because the saline rinse puts a taste in my mouth that makes me want to gag. I didn’t mind it at first, but each time it gets a bit worse. Hopefully I’ll be able to make it through treatment without the taste causing some kind of bigger negative reaction! I started experiencing “anticipatory nausea” the day before chemo because of anxiety.

I keep joking with Tyler that “everyone told me that chemo would be easy” because, of course, no one told me that. These treatments are known to be difficult to endure. I do think it’s interesting that cancer patients are often given metaphors of violence: kick cancer’s ass; fight a battle with cancer; combatting cancer; the list goes on. Susan Sontag wrote a book Illness as Metaphor where she discussed the metaphors that are used for discussing cancer and I really enjoyed it! I think that these violence metaphors are often used to create a sense of control for the patient in the treatment outcomes, but I find comfort in the knowledge that my medicine is the main driver for my outcomes.

I appreciated these words that I received from a family friend who went through neck cancer a couple of years ago: "Patient is patient”. I had never thought about how those two words were connected! I feel more comfort from thinking about this situation as simply requiring patience; not requiring a burden of “fighting” and “winning”. Again, I can only speak for myself here! I think that a lot of cancer patients find power in thinking about treatment as an active effort.

Outside of that, I have felt good on days when my pain is low, as well as while I’m talking to people. There is a threshold for pain where I stop being able to enjoy talking to people, but on the whole, I usually am able to escape the pain a little bit if I’m holding a conversation. I’ve been facetiming with my nieces and nephews and my friends! Ignoring the pain is much harder when I’m just sitting alone in my room.

A positive outcome from all of this is that having cancer has helped me keep things in perspective. Having good health is easy to take for granted, but losing it helps remind you that good health is the most important thing. Even within this health issue, I’m very grateful for the ways that my body is still doing so much for me.

Thanks for Reading

Today is June’s first birthday! It’s hard to celebrate a cat’s birthday, but please enjoy a little celebratory photo:

PET Scan Results

On Tuesday, I got a PET scan to check how the treatment has been working. I am very pleased to report that the size and activity of the tumor is way down! Check out these before and after photos:

The report from the radiologist:

1. Compared to PET 12/18/2025, significant reduction in size and uptake
of the anterior mediastinal mass which now demonstrates predominantly
background uptake with only small focal area of FDG avidity above liver
background suggestive of small area of residual disease.
2. Nonenlarged hypermetabolic upper cervical lymph nodes, favored
reactive.
3. No new site of metabolically active disease.

I talked through these results with my doctor today. He said that these results suggest that we’re on the right track with this treatment! He did a quick calculation of the measurements and found that the mass went down by 75-80%! YAY. The metabolic activity is also pretty low except for one spot that’s still a little elevated. He explained that (2) means I have some lymph nodes in my neck that show elevated activity, but that “favored reactive” means that it seems more like an unrelated immune response - not the cancer spreading.

I actually had pretty low expectations for this scan, because apparently the immunotherapy can make the activity seem higher even when the medicine is working. I had already discussed with my doctor whether we could abbreviate the treatment if I got good results on the 2 month scan, and he had told me that there yet isn’t good data on whether you can do that because the immunotherapy is so new, so it’s best to play it safe and complete the 6 months either way.

My Job

I hope you’ll all understand that I don’t want to include too many details about this news on a public platform. The most important thing to know is that I’m going to keep working part-time until the end of treatment at the end of July. In the meantime, I’m looking for another job. Let me know if you have any good leads!

Things I’m Looking Forward To

• Yard sale season

• Portland colorful spring gardens

• Having hair again after treatment ends

• Going on trips when I’m not immunocompromised anymore

• Going to concerts when I’m not immunocompromised anymore

• Going to the movies when I’m not immunocompromised anymore

Chemo Side Effects

This infusion and the last infusion both had much less tooth, mouth and jaw pain! That’s not to say that I was at zero pain, but it was very different from what I experienced in the first two infusions. We’re talking one shower a day now! And it’s actually to wash up!

As I said at the top, I do think I overexerted myself on my birthday, and the few days after that were sort of tough. I think that some of the pain was possibly already going to happen, but I probably didn’t help it by not resting enough. I felt a difficult-to-describe type of pain that radiated through all of my bones. It was bad for around a day, and I was back to the hot showers during that time. It wasn’t as bad as the mouth pain though, and it passed quickly enough. I guess it’s all relative! It hasn’t happened this time, so hopefully that won’t happen again.

I’m still getting neuropathy, but we’re just going to wait and watch to see if I start getting any pain or losing dexterity. Apparently sometimes when neuropathy gets worse in the hands, people start to drop stuff a lot. That hasn’t been happening to me, so the numbness isn’t too concerning.

Striped Hairs!

My hair is getting to be pretty thin, but the hairs that remain have also continued growing since I shaved it. I’ve also noticed a very interesting effect on the actual hairs that have been falling out: they are striped!

I have had two infusions since shaving my head, and I think that the lighter stripes represent the week or so after the infusions, and then my hair goes back to growing normally for a week before the next infusion. One of my oncologists said that I might get a striped effect on my nails, but that hasn’t happened. I bet that happens for the same reason as the striped hair though.

I’m now a bit conflicted, because my hair looks sort of strange in its current state (very thin grown out buzzcut), but I think it would be very interesting to see how many stripes I can get on one hair. With the current trajectory, I could possibly get as many as 10 stripes! My highest priority is to not look like gollum. But ideally, I would look like Alysa Liu (my striped hair twin):

Cardiology Consult

On Monday, I had another echocardiogram (ultrasound of the heart). On Tuesday, I had a consult with a cardiologist. She actually didn’t know that I had had an echocardiogram the day before, so I got to watch her reaction as she saw my echo results. She was very relieved and even a bit giddy! She said that my pericardial effusion (liquid around the heart) had completely gone away, and that my heart was pumping blood very well! That’s great news because one of my chemotherapy drugs can weaken the heart muscles.

Cancer Playlist

I put together a playlist of moody songs that felt relevant to my current situation and emotional state. Some of them just make me laugh.

• It’s a Hard-Knock Life from Annie

• I Like to Stay Home by R. Stevie Moore

• How Low Can a Punk Get? by Bad Brains

• Trees and Flowers - Extended Mix by Strawberry Switchblade

• Better Days by Graham Nash

• Superman by Lazlo Bane

• Bloody Mother Fucking Asshole by Martha Wainwright

• The Great Gig in the Sky by Pink Floyd

• I Am Not a Robot by MARINA

• Casimir Pulaski Day by Sufjan Stevens

• Hey Jude by Wilson Pickett

• I’m So Tired by Fugazi

Fun with Fractions

I was telling my family friend Lauren about how excited I get each time the fraction of how far I am through treatment changes, and she made me laugh so much when she responded: “Fun with Fractions!”. For some reason, I have always used fractions to help me get past an impatient feeling.

The first infusion, I was 1/12 of the way done. That felt pretty small. But the next infusion, I was at 1/6! And the next felt huge: a quarter! My last infusion was a third of the way done with treatment. I can’t wait until it’s halfway done. Maybe I’ll have a party!

Seeking Fashion Advice

My hair is thin enough that I think I could now get a scalp sunburn, which I’ve heard is a terrible feeling. Chemo also generally makes you more sensitive to the sun, so I’ve been trying my best to keep up with sun protection while still making an effort to go outside a lot.

I requested sun hat ideas from a couple of my incredibly fashionable friends, but I thought I’d see if anyone else had advice for cute sun protection. I tried on a few sun hats at the store, but I didn’t love how it looked with the bald head. Baseball caps also look a little weird with the bald head. Frankly one of the most compelling things that’s come across my computer screen was this... medieval bonnet? I don’t know, people! I’m panicking.

Another idea I had was to do something with a silk scarf. I don’t think the style where you tie it like a bandana is the vibe I’m looking for though, so I’ve been leaning toward something like an old Hollywood look:

Advice and/or links to cool summer scarves and hats are encouraged!

Thanks for Reading

I learned a fun term from online Lymphoma communities: Lymphomies! I really like that term. I love my lymphomies <3

I hope everyone is having a nice start to spring! The weather in Portland has been wonderful, and my front yard is starting to have lots of blooms.

Chemo Side Effects

By some miracle, this infusion has been much gentler than the last two. I am currently on day five, which has been the worst day for the pain in the past. Right now I just have mild pain in my mouth and some fatigue. I also vomited the last two mornings, but honestly I would take that any day over the mouth pain. I had been trying not to take too many of the nausea medications because they’ve been messing with my digestion, but I’m going to be more consistent with them to prevent the vomiting. Otherwise, I’m feeling a little off but I’m still able to take long walks with Lou. It’s sunny today in Portland!

Thanks for Reading

This was a quick one because I mostly just wanted to get my birthday party invite out into the world!

Mouth Pain & Heartburn

As I said above, the mouth pain got worse this time. There was also a bit of a mental component in the disappointment that my prevention and management efforts didn’t work. I tried eating popsicles during the infusions, but I eventually got sick of the taste of the popsicles, and I talked a lot during the infusion. Some people online said that they had to tell the nurses that they had to just be completely quiet during the infusion part so that they could focus on keeping their mouth cold. I also saw recommendations to completely pack your mouth with ice during the infusions. I’m going to try that out for next time!

The magic mouthwash was helpful in that it did numb my mouth completely, so the pain was almost gone except for in my jaw and throat. The problem is that the numbness only lasted around 15-30 minutes and I could only take it up to four times a day. The pain was too intense for me to sleep for more than about an hour at a time, so the mouthwash did very little for that problem.

The most comforting thing I could do was take hot showers. I probably took around 30 showers during the few days that my symptoms were at their worst. I think it’s funny that when I told my mom she immediately said, “you really are your father’s daughter”. When he’s feeling bad in any way, he always takes a million showers! I’m not sure exactly why it helped, but I think it’s just distracting my body with the very relaxing feeling of warm water. It felt especially good to feel the hot water on my shaved head. If you’ve had a shaved head before, then you know the feeling is amazing!

After having a sleepless night, I called my doctor and told them that the mouthwash wasn’t cutting it, and they decided to prescribe me a combination of Hydrocodone and Acetaminophen. It might seem dramatic to go straight to opiates, but I wasn’t allowed to take Ibuprofen because it can increase bleeding risk and the chemo already makes your platelets low. I’m going to meet with my doctor on my next infusion date and ask him all about other pain management options, because I’m not crazy about opiates. They are addictive and they have bad GI side effects.

The biggest issue with the Hydrocodone was that it made me vomit. I hadn’t actually even vomited from the chemotherapy and I was on nausea medication, so the Hydrocodone must really react badly with my stomach. The night that I first took it, I had to decide whether I wanted to try again so that I could sleep through the night, or not take it and risk another sleepless night affecting my recovery even more. I chose to try it again, which did make me vomit again, but offered enough relief for me to sleep through the night. I started taking two of the nausea medications at once and it helped keep me from vomiting when I took it, but I did ask my doctor whether there were any other options given the side effects. He prescribed me Oxycodone, which didn’t make me vomit but also didn’t help with the pain. I ended up switching back to Hydrocodone for the last night and then my pain got mild enough that I could just use Tylenol.

The vomiting created a new kind of pain for me: heartburn. I learned from one of the doctors that I spoke with that one type of cells that are accidentally killed off by chemo are the mucus membrane in your entire GI tract, from mouth to intestines. When I threw up, my stomach acid was directly exposed to my esophagus and throat without a mucus membrane to protect them, so I’ve had what feels like really bad heartburn since the vomiting episodes. I started taking a medication called Sucralfate that creates a protective barrier in the GI tract. I’m hoping now that I’m feeling better that I’ll be able to recover from that faster. At least the mouth pain is gone!

My Grandfather

My paternal grandfather died from Hodgkin’s in the 1960’s before there were good treatments available. He died over thirty years before I was born, so he’s always been a bit of a mystery to me. My father was around 6 years old when his father died and my grandmother died before I was born, so I really don’t have a lot of access to information about him.

Recently, my dad started digitizing some old family videos from when he was a toddler, and I’ve been able to see both of his parents come to life. I’d only ever seen photos of them, and it was surreal to see their real mannerisms and laughs. Of course it’s also hilarious to see my dad toddling around and playing and crying! My grandmother was very beautiful and my grandfather was very handsome. He reminds me of my dad and I think I sort of look like him too!

I’ve always been sad that I never met either of them, and this experience has been making me think of my grandfather a lot. In my darkest moments, I’ve found perspective by remembering that if I had been diagnosed with this disease 60 years ago like my grandfather was, I would be given under 5 years to live. While my treatments are very difficult and hard on my body, I try to always remember that I am very lucky to have access to them.

As I said, my father was only 6 years old when his father died, and he was a toddler when his father was given the diagnosis of Hodgkin’s. His memories of that time are very limited. I think it’s very cute that the clearest memory he has of the time was that there was a diner across the street from the treatment center, and that he would be allowed to get pound cake when he came along for treatments. He also has a vague memory of his father coughing up blood, and he thinks that the treatment his father received was called “Nitro Mustard”.

I looked it up and I think it’s very likely that his father received Nitrogen Mustard. It turns out that it was the first form of chemotherapy! It’s called Nitrogen Mustard because it is literally derived from the mustard gas that was used in World War I. Autopsies of the soldiers that were exposed to mustard gas showed that they were depleted of their white blood cells, so some scientists had the idea to try testing it as a treatment for lymphoma (cancer of the white blood cells).

Nitrogen Mustard has long since been retired because of its incredible toxicity. I do think it may have given my grandfather some extra years, but I’m sure that it was not easy for him to undergo this treatment. I went ahead and sent an email requesting his medical records from Sloan Kettering where he was treated to see if they still had them. I always wonder about whether we had the same symptoms.

Other Chemo Origin Stories

I found out how a couple of the chemotherapy drugs that I’m taking were discovered, and I think that it’s very interesting! I think it’s funny that some people encourage “plant medicine” instead of chemotherapy because I found out one of my medicines is actually derived from a flower.

One of my chemotherapy medications is called Vinblastine and it’s derived from a plant called the “Madagascar Periwinkle”. Apparently the natives of Madagascar used this plant as a folk remedy for diabetes, and scientists wanted to explore whether that could be a good medicine for diabetes. They tested it out on rabbits, and the rabbits all died of bacterial infections due to depleted white blood cell counts. Like nitrogen mustard, the scientists thought that it could be helpful for cancers of the white blood cells like Lymphoma and it was.

The other interesting origin story is for Adriamycin a.k.a. Doxorubicin a.k.a. “the red devil”. This medicine was actually developed in Italy in the 1950’s from soil from outside of a 13th century Italian castle!

Shaved Head

Right as the mouth pain was starting to get worse a few days after my last infusion, I finally decided to shave my head. Hair was getting everywhere, and it was starting to be more taxing to constantly be pulling it off my head in clumps. I shaved it on my front porch, and Tyler did a little photo shoot while I was shaving it. Please enjoy the photo shoot contact sheet:

I thought I would feel relief or maybe sad from shaving it, but I didn’t really feel very much at all. It’s been a long time since I used to shave my head (~2017-2019), so at first it kind of felt like looking at an old photo when I looked in the mirror.

I was showering a whole lot due to the mouth pain, and having the water run over my bare head was actually comforting. It was also helpful to not have to dry off my hair after every shower.

Thanks for Reading

My next infusion is scheduled for March 20. Like I said, until then I’m just going to try to enjoy feeling good. Here’s a contact sheet of a photo shoot Tyler did while I was getting my last infusion.

Mouth Pain

I was surprised that the most difficult side effect from my treatment was mouth pain. The first couple of days after my first infusion, I felt like I had burned my tongue and my mouth: a swollen, sort of numb feeling. I didn’t mind that too much. The next day or two after that, I felt an aching in my mouth and throat that reminded me of the feeling you get in your throat before a cold. That gradually turned into an aching in all of my teeth. That aching got worse and started to really bother me on Friday. I also had pain in my jaw bone.

I had been prescribed something called “Magic Mouthwash” after bringing up the mouth pain to my doctor. Magic mouthwash is commonly prescribed for chemo patients, and I found it funny that all of the medical professionals that I spoke with referred to it exclusively as magic mouthwash. There are different “recipes” for it, but mine is a combination of liquid lidocaine, liquid benadryl, and something called Maalox which normally treats heartburn. Unfortunately, after trying a couple of nearby pharmacies, we realized that the closest pharmacy that could fill my prescription was in a suburb of Portland and would take a few days to fill the prescription (plus the weekend).

I think a lot of people don’t realize how common mouth side effects are for chemo. The mouth has a lot of cell turnover, so chemo drugs tend to cause mouth side effects because they’re targeting rapidly dividing cells. It’s also common to get mouth sores because of being immunocompromised. That may happen to me later on, but I haven’t experienced any mouth sores yet.

I was comforted to find posts on reddit of others who had experienced similar issues and said that it got better as treatment went on and that magic mouthwash helped. I’m also going to try sucking on ice during the chemo infusions, because apparently the ice causes constriction of blood vessels and helps keep the drugs from being delivered to the tissue in your mouth. There is some evidence that this can help with mouth pain from chemo.

The pain from my tooth aches was actually the worst pain I’ve experienced, including my bone marrow biopsy. It made me cry for hours and nothing offered much relief other than hot showers for some reason. The mouth pain was mostly gone by Monday, and was easily managed by Tylenol after that. I actually had a wonderful week once the mouth pain was gone. I didn’t feel much fatigue or anything after that.

Other Side Effects

The only remaining side effect is that the tips of my fingers are numb. This is called neuropathy and it normally gets better after finishing chemo. If it gets worse, my doctor may prescribe me something to help prevent nerve damage. Otherwise, I did have fatigue for the first week after my infusion, and I had some nausea but it was easily managed with Zofran.

Hair Loss

I’m starting to lose a lot of hair, which has been hard to watch. Up until now, I could kind of pretend that I didn’t have cancer if I didn’t say anything about it, but once my hair is gone I think that’ll be much harder. I didn’t expect to feel so emotional about this because I’ve had very short hair in the past by choice, but it feels really different for it to be out of my control. I started squirreling away my hair in a mason jar and I’m not even really sure why.

I did order a cheap wig to explore my wig options. I got advice from a family friend who had done chemo that I should try out cheap wigs before investing in a nice one. My insurance actually gave me a pretty substantial budget for wigs, so I might get an expensive one eventually. I tried on my cheap wig, but it looks pretty weird with my actual hair under it so I’m waiting until I’m bald to do more experimenting.

Fun Stuff

Once the side effects cleared and I felt more normal, I felt really happy because “normal” felt like a million dollars in comparison to how I had been feeling. Because of that, I actually had a wonderful week last week! I worked the whole week and I also did some social distanced hangouts with my friends and family. I got a cookie at Coquine and went for a walk at Mount Tabor with Riley and Ella:

I also went to the Rhododendron garden with my sister and her kids and one of her best friends from college who was visiting and who I hadn’t seen in a very long time. While we were at the gardens, we stumbled upon a little cove that had several nutria. If you don’t know what a nutria is, it’s basically a very large semi-aquatic rat. I was startled and a bit grossed out by it, but my 3-year-old nephew was absolutely enchanted. He couldn’t stop talking about how cute he thought it was!

I also tried out Dungeons and Dragons over zoom with my friend Matt from work! My character is an old horse named Norma who complains a lot. Her biggest strength is that people underestimate her <3

Gilda Radner

While I was in Austin, I went to the Lorne Michaels exhibit at the Harry Ransom center, and I bought a book called “Bunny Bunny” in the gift shop. The gift shop was full of books by and about SNL cast members. I didn’t really know much about Gilda Radner, but I found the cover very beautiful:

I didn’t know that Gilda Radner (famously) died from ovarian cancer in the 80s, so I was surprised when the last third of the book was about cancer. I became interested in Gilda Radner’s story and when I found out that she had written a book called “It’s Always Something” about her journey with cancer, I immediately ordered it. I devoured her book, and started watching her old sketches too.

It was both sad and comforting to read her book. She had a very different health situation from me, but there are certain parts of her book that resonated a lot with me. I also enjoyed learning more about her. One of my favorite parts of the book was when she talked about her tiny dog named Sparkle. I started calling Lou Mr. Sparkle in her honor and because I think it’s funny (he is a deeply serious dog). She was obsessed with her dog in a way I could relate to! I felt so sad when I finished the book, not just because she finished writing it right before she died, but also because I really just wanted to keep reading it.

Thanks for Reading

I’m gearing up for my next infusion on Wednesday, and in the meantime I’m trying to appreciate how good I feel at the moment. Cross your fingers that the mouth pain isn’t as bad this time!

Allergic Reaction

I’ve never had any allergies, so most of my understanding of allergic reactions is through the way they’re portrayed on TV shows. It actually felt pretty similar to how I had imagined it. All of a sudden, I started to feel nauseous and hot, then I started to feel swelling in my chest and throat. I started to have trouble breathing and feeling tingling and swelling in my lips, and that’s when I pressed the call button. The nurse came over and turned off the iv drip, and within seconds I felt almost completely normal!

My mom and the nurse both told me that my face was very very red and they could tell that the reaction ended quickly because my face got back to the its original color. I was only 10 minutes into the immunotherapy infusion that was meant to take 30 minutes, so we had to figure out whether I could complete the dose. The nurse called over a doctor and they agreed on a plan to put me on a steroid and an antihistamine, and then try giving me the immunotherapy at half the speed. I had some nausea, but otherwise I didn’t have any reaction after that, and they even took me back up to the initial speed after 10 minutes.

Apparently, immunotherapy causes allergic reactions sometimes. It sort of makes sense because the whole point of immunotherapy is to hype up your immune system, and allergic reactions are an overreaction from your immune system. It’s common for the allergic reaction to be resolved after the first infusion, so hopefully I’ll be able to continue with the immunotherapy without issues.

Chemotherapy

I did the three chemotherapies before doing the immunotherapy. Each drug is administered separately. First, I had Adriamycin, which is commonly referred to as “The Red Devil” because it’s red. It made my pee turn red! It was administered through a syringe, and so was the second drug Vinblastine. The last chemotherapy, Dacarbazine, was a bag that was administered through an IV drip over the course of an hour. The IV made a clicking sound that sometimes sounded like a frog croaking.

The side effects of chemotherapy usually don’t start until a couple days after the infusion, so I’m still feeling normal but I’m expecting tomorrow or the next day will be a little rougher.

Infusion Center

I packed several bags of supplies for the infusion since I knew I would be there for many hours. I packed a very comfy pillow and blanket, lots of snacks like ginger hard candies and trail mix, books, and my switch. I had a nice recliner chair that was set up at the corner of the floor with a nice view of the hills. I tried to take a nap but ended up being a little too nervous to sleep. I ended up mostly playing Zelda Breath of the Wild when I had down time!

Port

After spending two consecutive days at the ER with an IV in my arm for at least 6 hours, I saw the benefit of the chemo port even more than I expected. The insertion was very easy and much less painful than an IV insertion. Also, the IV got very sore on my arm, and I barely felt the port the entire time I was at the infusion center. I’m a fan!

Thanks for Reading

I’m still working on getting my next infusion scheduled, but it should be in two weeks. Until then, I’ll be laying low and starting on my extensive list of media recommendations and books, puzzles, and music that I’ve received! Hopefully I won’t have any updates until then!

The most exciting news is that MD Anderson sent some additional slides to OHSU and the pathologists at OHSU are now comfortable with skipping the repeat biopsy! I can start chemotherapy in a week, and until then I’m on more steroids to keep the cancer from advancing.

ER Visits

On Wednesday early afternoon, I started to feel a somewhat mild pain on the left side of the chest. I sometimes get tightness in my chest from anxiety, so I thought maybe it could just be anxiety and I decided to take a nap to see if that helped (it usually does). When I woke up, I still had the pain in my chest and it seemed to be getting worse, so I called my oncologists’ office to ask for guidance. The nurse recommended going to urgent care, and then urgent care recommended that I go to the ER. I had been warned by the fertility clinic that I was at a higher risk for blood clots because of the mediastinal mass as well as the fertility medications, so I wanted to make sure that I wasn’t having a blood clot.

I spent around 6 hours in the ER on Wednesday night. As the night went on, my pain got worse, and I realized that it was much worse if I was laying down. First, they wanted to make sure that I didn’t have a blood clot because that would be life threatening if it wasn’t treated immediately. I did a chest X-Ray and a CT scan to check for the clot. Luckily, they didn’t see any sign of a clot, so they sent me home with instructions to talk to my oncologist as soon as possible.

On Thursday morning, I reached out to my oncologist and reached a nurse who told me to go back to the ER. This time, I went to the OHSU ER and I felt it was better than the other ER. After a lot of waiting, I got an echocardiogram and they found that my pericardium (the sac surrounding my heart) had accumulated “small to moderate” amounts of fluid. This result was enough for them to diagnose pericarditis. Pericarditis is inflammation of the pericardium. Apparently, Lymphoma can predispose you to pericarditis, and it can also happen from a virus. I did just get over a bad cold, so that could have also contributed to the inflammation.

I’ve been watching the new season of the Pitt in the last couple weeks, so it was interesting to end up in the ER and see what the real experience is like. There is certainly a lot of waiting involved, and there is always someone making a scene about how long they’ve been waiting. Hearing all of the cries of pain may have been the hardest part of the whole experience for me.

No More Biopsy!!!

Last night right as I was being discharged from the hospital, my oncologist Dr. Okada called and told me that he had just gotten word from the pathologists at OHSU that they had received the immunostains from MD Anderson and it helped to reveal a whopping FIVE Reed-Sternberg cells (the characteristic cell for Hodgkin’s Lymphoma). I think the pathologists were being a tiny bit petty by saying that the slide was only “highly suspicious for classic Hodgkin Lymphoma”, but that’s just my personal opinion. The result was enough to convince Dr. Okada that I could proceed with treatment with enough certainty that this is the correct diagnosis.

A self-advocacy brag and also a huge shout out: I reached out to both of the doctors that I had seen at MD Anderson to see if they could do anything to help with the repeat biopsy situation. The Lymphoma specialist sent me a short message shrugging her shoulders about it, but the doctor of internal medicine (the first doctor I saw at MD Anderson) jumped into action and created a conversation between the pathologists at MD Anderson and OHSU. I think that his help led to the new slides being sent to OHSU, so I am very happy that I asked him!

I’m scheduled to start treatment in a week (Friday, Feb. 20). I hoped that I would be able to start today, but then again I have tickets to a queer magic show tonight and I would hate to miss that.

Egg Retrieval

In good news, the egg retrieval went well! I didn’t get as many eggs as I’d hoped, but I’m honestly just glad to have finished the process. It was not easy! I’m happy to be off the hormones and to not have to go back and forth to Seattle anymore.

I felt sore after the surgery but it wasn’t too bad. A silver lining of the trip to Seattle was that we stayed in an Airbnb with an amazing artist who was very sweet and cool! She showed us her studio and she even picked me up from the hospital after my egg retrieval procedure. Another silver lining was that we ended up staying the last night in Seattle with Billy’s older brother Alex and we had so much fun seeing “Young Frankenstein” and catching up with him.

Thanks for Reading

Let’s all hope my next week is actually uneventful! I have had enough of eventful. I’m both dreading and excited to start treatment. I hope the side effects aren’t too bad.

Please enjoy some photos of art at the Seattle Art Museum.

Car Accident

I’ll start this off by saying I am completely uninjured! This silly image will become more funny after you read the story of my car accident:

On Friday, I set up my new puzzle table and decided to go to a nearby little free library that I knew had puzzles. I was driving through a green light when I looked to the right and saw there was PT Cruiser barreling toward me. I immediately heard the crunch of my car door crumpling and my head lightly hit the window on the door. This is the damage:

The driver immediately pulled over and got out. He apologized and told me that he would pay for all of the damages. He gave me his phone number and address and I took a photo of his license plate. He told me that he didn’t speak English very well and said he would head home and call me once he got someone else to translate. I called him a few times that day and he didn’t pick up. Later in the evening on Friday, he sent me this cryptic text and this is the last I’ve heard from him:

I’m just happy that I didn’t get injured, but this was certainly not what I was hoping for at this moment in time. Did no one tell him that I have cancer?!

Fertility - Egg Retrieval on Saturday!

The day after my car accident, I took the train to Seattle for a day trip to get an ultrasound. If I’m honest, morale was pretty low that day. Between getting in a car accident and being pumped full of hormones, I was down in the dumps. I still enjoyed the train ride, and it was making me nostalgic for when I lived in Pittsburgh and I could take the train home to New Jersey.

UW asked me to come back to Seattle on Tuesday for another ultrasound. They said that I was getting pretty close to the egg retrieval so I decided to stay in Seattle until the end of the week because there would be more ultrasounds and traveling 6 hours round trip multiple days a week sounded a little exhausting. My mom is staying in Seattle with me as well.

Tomorrow evening, I’ll get the trigger shot. The trigger shot happens when enough follicles reach a large enough size that they have a good shot of being mature. The egg retrieval happens 34 hours after the trigger shot, so I’ll get do the egg retrieval procedure on Saturday morning.

Follicles are small fluid-filled sacs on ovaries that each contain one egg. Normally one egg is developed per menstrual cycle, but these hormones cause many follicles to develop and grow up to around 2cm wide. Here’s a picture of my follicles on Monday (there are 4 follicles in this photo):

Additional Biopsy - UGH

Yesterday, I got a call from Dr. Okada that really surprised me. He told me that the pathologists at OHSU had reviewed the slides from the biopsy of the mass in my chest and that they could not diagnose the type of Lymphoma I have as specifically Hodgkin’s. The pathologists at MD Anderson had given a definitive diagnosis of Hodgkin’s based on the same slides, so I found this very confusing and surprising. This is the OHSU pathologist’s official comment:

We appreciate the opportunity to review this challenging case. The differential diagnosis includes primary mediastinal large B-cell lymphoma (PMBCL) and classic Hodgkin lymphoma (CHL) among others. A definitive diagnosis cannot be rendered based on the limited sampling. Original immunostains were not received, and no definite Reed-Sternberg or Hodgkin-like cells were identified on morphology or by in-house immunohistochemical studies.

I liked the first sentence! I guess Hodgkin’s is more difficult to identify than a lot of other cancers, especially when the biopsy got such a small sample. The good news is that the prognosis for the other type of Lymphoma is also very good. The bad news is that it has a different chemo regimen, and if we were to incorrectly proceed assuming Hodgkin’s, the treatment wouldn’t work as well. Dr. Okada thinks that it is worth confirming this diagnosis. He did say that if he were a betting man, he would say that it was Hodgkin’s because of the alcohol pain.

We’re working on getting the biopsy scheduled for Monday, and Dr. Okada said that the pathologists could look at the results within a couple of days. If the biopsy confirms the diagnosis, I might be able to start treatment as planned on Friday 2/13. If the biopsy still can’t confirm the diagnosis, then I’ll have to get a more invasive biopsy. I hope that I don’t have to do that! I do not want to delay treatment.

I reached out to my oncologist at MD Anderson to see if she had any additional guidance on this situation. I’m eager to hear her opinion on this!

Treatment Plan

Before all of this repeat biopsy stuff, I had actually made a decision on my treatment plan. I spoke with my oncologist at MD Anderson (Dr. Ahmed) about the clinical trial and she said that she would only recommend doing the trial if I couldn’t get Nivo-AVD any other way. The results have been so good for Nivo-AVD that she could only recommend a treatment plan that gave me the greatest possible chance of having immunotherapy. After discussing with the tumor board, Dr. Okada had already told me that he would support Nivo-AVD as a treatment plan for me if I didn’t want to participate in the trial, so the decision became simpler after hearing Dr. Ahmed’s opinion. I plan to do 6 months of Nivo-AVD assuming that this is Hodgkin’s Lymphoma.

Thanks for Reading

I’m hoping that my next post is a little bit less exciting! I can’t wait to be bored again. For some good news, my port is healing very well! Hope everyone is having a better week than me <3

The biggest update is that my oncologist proposed a clinical trial that I could participate in for my treatment. I wasn’t expecting him to have a different opinion from Dr. Ahmed so I have some thinking to do.

Meeting with Portland Oncologist

The day after I got back to Portland, I met with an oncologist named Dr. Okada. We talked for almost two hours, and I really appreciated getting his insights about all of this. Talking with him helped me realize the importance of getting a second opinion, because even if I end up choosing the treatment plan that Dr. Ahmed recommended, he offered information that I hadn’t received from Dr. Ahmed about my condition and the possible effects of treatment. Both of the oncologists that I saw were very smart and capable, but I think casting a wide net is helpful for understanding a problem this complex and making an informed decision.

Dr. Okada was surprised to hear that Dr. Ahmed had gone straight to Nivo-AVD because it isn’t currently the standard of care for early-stage Hodgkin’s. However, he mentioned a German study (link) showed excellent results for treating Nivo-AVD in early-stage Hodgkin Lymphoma. He said that he goes to a “tumor board” every Tuesday where doctors discuss treatment plans for their patients. I asked if I could join for it but he said that there would be too much confidential information. I would be so interested to hear their conversation! We’ll meet next week to discuss treatment plan further after he’s received some additional opinions from the tumor board. Just as a side note, I really like the term “tumor board”.

He is open to the idea of Nivo-AVD, but he also proposed participating in a clinical trial for my treatment. Hodgkin’s Lymphoma patients are in a very good position of having amazing survival rates for the standard-of-care treatments as well as the more experimental treatments. Clinical trials are now testing treatments that all have very high survival rates, but may have varying side effects.

The complexity in this decision (in my mind) comes down to the side effects that could arise from treatment. Each drug comes with its own special terrible side effects that could cause permanent damage to the body.

• Bleomycin is a chemotherapy drug that causes cumulative damage to the lungs during treatment. People with asthma and smokers are at higher risk for lung damage from this drug. I’m low risk given that I’ve never smoked and my PFT came back with normal lung function.

• Nivolumab is an immunotherapy drug that can permanently damage the thyroid, which can be managed with pills but would still be very difficult to have for the rest of my life. It can also cause other autoimmune issues.

• Brentuximab is a chemotherapy and immunotherapy drug that can cause neuropathy (damage to nerves). This is a fairly uncommon side effect, but losing feeling in the tips of my fingers is certainly something I want to avoid.

The trial is comparing the standard therapy for early-stage Hodgkin Lymphoma (ABVD) to the use of the Brentuximab + Nivolumab. All participants start with two months of ABVD and then get a PET scan at the end of the two months. My doctor said that at the 2 month mark around 80% of people have a rapid early response which means in this case that they can’t detect the disease through a PET scan. That doesn’t mean that there isn’t still cancer, it just means that it’s mostly gone.

If I have a “normal” PET scan at the 2 month mark, normally that means that I’d take AVD for 4 months. AVD is the same drugs as ABVD except Bleomycin is removed because of the lung toxicity. In the study, half of the patients in this situation would get the standard of care, and half would get Brentuximab + Nivo for 4 months instead. The treatment groups would be randomly assigned but not blind, so I would know which treatment I’m getting. I’m still figuring out how I feel about these options.

If I still show elevated metabolic activity at the 2 month mark, there would be different options that I am not as crazy about. The treatment that I would like to avoid is radiation therapy. The mass is in my chest, pressed up against my heart and my lung. Radiation is safer than it has been in the past, but both of my oncologists expressed concern about the placement being so close to my heart and lungs. Radiation through my chest would also increase my risk of breast cancer down the line. The randomized groups for this part would both include radiation therapy. One of the groups is 4 months of Bv-Nivo, and the other is 2 months of a couple of more intense chemotherapy regimens (eBEACOPP or eBPDac). I think that if do decide to do the trial and I ended up with these options (which is unlikely), I might decide to drop out of the trial.

Clearly, I have a lot to think about. Fortunately, I’m doing the fertility treatments for the next couple of weeks, so I have some time to decide. I reached out to Dr. Ahmed at MD Anderson to see what she thinks about the clinical trial.

Fertility

I had been meeting with a fertility clinic in Portland and made a plan to start the fertility protection process on Thursday of last week. On Wednesday, I got a call from the fertility clinic telling me that their anesthesiologist had reviewed my case and decided that I was too high risk to operate on in their facilities due to the mass in my chest. I was very disappointed to hear that, especially with such late notice, but I understand the need to be conservative about administering anesthesia. Unfortunately, the closest clinic that can take high-risk patients is University of Washington (UW) in Seattle.

Thankfully, UW agreed to take me as a patient. They initially scheduled me for the consult on Tuesday of next week, but I decided to call them and grovel for a sooner appointment and it worked! The cancer card works every time! I met with an amazing doctor at the fertility clinic on Friday morning and it started an unbelievably stressful but productive day of figuring out how to get the fertility treatments started on such short notice.

The process of egg retrieval starts with around 2 weeks of hormone injections and ultrasounds every couple of days. The fertility clinic needed an ultrasound before I started the injections, and the soonest that the fertility clinic in Portland could get me in for an ultrasound was Monday. I wanted to get started with the treatment as soon as possible though, so I called around to different radiation centers to get an ultrasound and was able to get an appointment across town on Friday afternoon. I also realized that the medications hadn’t been mailed to me yet, and I had to arrange for the medications to be picked up from a local pharmacy (getting these medications on short notice can be tough). I ended up needing to pick up medications from 3 separate pharmacies to get all of the medications required on such short notice. I also had to arrange for an override from my insurance to be able to pick up drugs from an out-of-network pharmacy. Friday was absolute chaos but I felt proud of my ability to juggle such complicated logistics!

I started the injections last night (Saturday) and I’ll be continuing to do injections daily until the doctors determine I’m ready for a “trigger shot”. The trigger shot will induce the final egg maturation, and a couple of days later, I’ll have the egg retrieval surgery. I’ll be going under general anesthesia for that procedure, and I’ll need to travel to Seattle for it. I’ll only need to spend the night before and the night after the procedure in Seattle, and then I can head back to Portland. Seattle is only a 3 hour drive from Portland, so it shouldn’t be too complicated to get there. I might take the train!

I was surprised to hear that I’d be self-administering the injections. I also had to mix the drugs myself through a syringe. I felt pretty proud that I was able to give myself a shot! It was administered through my belly fat. The medication did sting going in. I had a small reaction to the medication: my entire belly was red after I got the shot, but it was gone by the time I woke up. I let my doctor know and they said that some people react like that and that it’s probably okay as long as it wasn’t causing hives or difficulty breathing.

For now, I’ll have what my doctor referred to as “mega PMS” for the next couple of weeks. I am stocking up on ice cream to prepare! I’m almost 24 hours out from the first injection and I’m feeling totally normal.

Road Trip

My mom and I had a really nice time on our road trip. My mom didn’t drive much because she has a severe fear of heights that makes driving on bridges (even certain highway ramps) very uncomfortable for her. She was a great road companion though! We listened to lots of music and podcasts and our total drive time was something like 35 hours.

Our first night, we stayed in an airbnb in El Paso that reeked of Febreze and both of us are pretty sensitive to that, so we weren’t super comfortable there. After that though, everywhere we stayed was lovely! On the way to Phoenix we got some amazing Ethiopian food in Tucson.

The second night we stayed with my dad’s long-time friend Al and his wife Kristen in Phoenix. While I haven’t seen Al since I was a child, I’ve heard his voice on the phone with my dad a whole lot, so it was comforting to stay with a familiar family friend. Kristen went through breast cancer a while back so we had a lot to talk about and while she had a completely different treatment from me, she was able to relate to a lot of my experiences like having to make quick decisions and having an overwhelming amount of information to digest in a short amount of time. She gave me her “Laugh List” of easy watch comedies and she also gave me a few scarves that she thought would be comfy to wear during chemo infusions.

In LA, we stopped to have dinner with my childhood BFF Billy. My mom hadn’t seen Billy since we were kids, and both of them were really happy to spend time together again and catch up. We had delicious Italian food and then drove to Oxnard where we stayed the night. I woke up before sunrise and walked to the ocean only to remember that the sun doesn’t rise over the ocean on this coast!

Our last stop was at an inn on the coast in Mendocino. The drive to the inn was long and windy, but we felt so comfortable at the inn. Breakfast was included, and everyone was incredibly friendly. My only regret is that we couldn’t stay for longer!

We arrived in Portland on Tuesday night, and it’s been pretty busy since we got back. While I’m not excited to start chemo, I am excited for when I have fewer appointments and logistics to manage.

Working

I haven’t been working since I got my CT scan results back, because I’ve had a lot to manage with all of the appointments and procedures. It turns out having cancer is kind of a full time job. I am hopefully going to be more available starting soon, but I’ll have to see how I’m feeling with the treatments.

From what I’ve heard, some people prefer to work during treatment so that they can have some sense of routine and normalcy. Especially given that I have a remote job already, it seems possible that I’ll be able to work almost normally during treatment. At a minimum though, I’ll need to miss work for the infusions every two weeks (they normally last around 5 hours).

Some people prefer to focus on healing during treatment and decide to take leave for the entire duration of treatment. I don’t think I’ll opt for that, but I have to see how bad the side effects of treatment are for me. It’s impossible to know exactly how I’ll feel during the treatments, but from what I’ve heard, most people feel more “normal” starting around a week after the infusions, so I may opt for a schedule with one week working before infusions, then one week on leave after the infusions.

How to Best Support Me: Part 2

I thought of another request! Chemotherapy is notorious for suppressing appetite, so I may need to adjust the ways that I eat and I’d like to request recipes from people. The guidance that I’ve received is to focus on nutrition-dense and high-calorie food because the windows of appetite may be smaller while I’m in treatment. Some people end up drinking ensure to at least prevent malnutrition. Hopefully I won’t get to that point, but for now I’m trying to gather recipes that are nutritious and hopefully delicious.

I’m trying to focus on high fiber foods because chemotherapy often causes GI issues. I’m also going to try to do some meal prepping before infusion days so that I don’t have to cook while I’m feeling the worst.

Thanks for Reading

Hopefully the next couple of weeks will be mostly uneventful while I wait for my body to be ready for the egg retrieval procedure. Please enjoy this sign that I bought on the side of the highway in New Mexico:

I finally scheduled all of my appointments in Portland! Yay! I’m meeting with an oncologist in Portland on Wednesday of next week (1/21), and I’m planning to start the fertility protection the next day. Today, I’m getting eyebrow microblading. Don’t worry, I’ll get it really light!

I’m currently in Texas, and I need to get back to Oregon by Wednesday. I drove to Austin in November with my dog Lou because I like road trips, but it’s become a bit of a burden to figure out how to get back to Oregon now that I have my cancer diagnosis. My dad offered to drive my car and Lou (who is just a little bit too big to fly on a plane) back to Oregon, but it kind of pained me to think about leaving Lou behind. Once we got the scheduling arranged, my mom and I realized that we could actually make it back to Oregon in time for the appointment if we left on Friday. I love road trips, so I happily agreed! We’re going to stop in El Paso, Phoenix, LA, and Mendocino.

Port Placement

Yesterday, I had my chemo port placement procedure. Before starting chemo, most people get a chemo port implanted on the right side of their chest, just under the collarbone. The nurse told us that the notable exception to the standard placement is for hunters: kickback from rifles can be uncomfortable if you have a port on the right side, so sometimes hunters request getting the port on the left side. I’m guessing that’s more common in Texas!

The port provides direct access to a major vein near your heart so that you don’t have to go through veins in your arms. Apparently, when you get chemo without a port, it can change your veins and make them harder to find. Most people that are receiving at least 4 rounds of chemo get a port placed.

The surgery wasn’t too bad because they sedated me, so I was asleep the entire time. I felt very sore starting in the evening but extra strength Tylenol was enough to dull the pain. I’m not supposed to lift anything heavier than a jug of milk for the next couple of weeks, but otherwise the recovery will be pretty easy.

I will spare you from looking at a picture of my port, because it is currently looking pretty wild. I have relatively thin skin and less than average tissue on my chest, so you can see the catheter clearly, and the port protrudes a lot. It kind of looks like a gumball was implanted under my skin. If you’re curious, I am happy to text you a photo LOL.

Fertility Preservation

I decided to go forward with fertility preservation in Portland. The process of egg retrieval will take a couple of weeks. I’ll give myself a hormone shot in the abdomen daily for 8-12 days, and I’ll get an ultrasound every couple of days and then daily toward the end. Once they determine I’m ready, I’ll get the egg retrieval procedure, which will be low risk and less invasive than the port placement. After the egg harvesting, I’ll start chemo right away.

Thanks for Reading

For now there (hopefully) shouldn’t be many health updates in the next week. Thanks for reading!

Lymphoma Specialist / Treatment Plan

I really liked the Lymphoma specialist that I met with yesterday. The biggest update out of my meeting with Dr. Ahmed was that we now know my exact treatment plan. I had a satisfying moment when she told me that I would be doing Nivo-AVD (immunotherapy + chemotherapy): just as I predicted and hoped for! Nivo-AVD will come with significantly lower risks of toxicity, so I’m pleased to hear this news. I’ll be doing 6 months of treatment. Nivo-AVD tends to be tolerated much better than ABVD, but I’ll probably still have significant fatigue and many other side effects. I will likely lose my hair. But look at how cute I was with a buzzcut!

Staging

I didn’t get a firm answer on my stage, and I thought the reason was pretty interesting. In other solid mass tumors, the staging is much more important. This is because in other solid mass tumors, if the tumor cells have figured out a way to exist in other parts of the body, that means that they have evolved and figured out new ways to evade your immune system. If the tumor cells are localized to a tumor, they probably haven’t evolved the ability to move to other parts of your body.

Hodgkin’s Lymphoma, on the other hand, is a cancer of the white blood cells. White blood cells are naturally found all over your body, so if the cancer cells migrate to other parts of your body, that doesn’t necessarily mean that they have evolved into a more immune-evasive cell. Because of that, Lymphoma staging doesn’t affect treatment nearly as much as it does for many other types of cancer. Stage also doesn’t indicate a significantly worse prognosis. For those reasons, the doctors that I talked to weren’t terribly interested in the stage I have. They agreed that I have early stage, but didn’t find a lot of value in distinguishing between first and second stage.

Fertility

I met with an Onco-Fertility specialist yesterday and discussed fertility preservation related to chemo. I had been on the fence about it, but I’m glad that I met with her because it helped me understand the full picture of this decision. She confirmed that the fertility risks of Nivo-AVD are fairly low, but I hadn’t been thinking about the scenario where I don’t respond to Nivo-AVD and end up needing a different treatment. There are other treatments to Hodgkin’s that do have a higher impact on fertility, and at that point it would be too late to do fertility preservation, because you can’t harvest eggs until a year after you complete chemo.

I’m leaning toward doing fertility preservation so that I don’t have to worry about it. The tradeoff at this point is only delaying treatment by 2-3 weeks, and my Lymphoma doctor was not worried about that delay. She said that if I choose to do that, I can take steroids to keep the cancer from advancing until I start chemo. Who knew that steroids could keep my cancer at bay!

I did an ultrasound later in the day and they found that my fertility markers are great, so it should be possible to harvest enough eggs in one round.

Bone Marrow Biopsy

In my PET scan, my bone marrow showed slightly elevated activity. This makes sense for Lymphoma, because white blood cells are produced from bone marrow, and my cancer is causing my white blood cell count to be higher. However, the elevated activity could also mean that the disease has spread to my bone marrow. To better understand the disease progression, they decided to do a bone marrow biopsy.

No one really told me what to expect for a bone marrow biopsy except for a charming older British man that I met in the waiting room of the Lymphoma center. My mom and I were talking about some of my symptoms and he couldn’t help but overhear and started to chat with us. I told him that I was getting a bone marrow biopsy later in the day and he reassured me that he had gotten many and they weren’t too bad. He had a pretty funny story related to bone marrow biopsies, though. He was working in Asia when he was first diagnosed and had to do a lot of procedures with a translator in places like South Korea and Malaysia. In South Korea, he was in the procedure and the translator said: “the doctor said you can scream”. Not exactly what you want to hear before your first bone marrow biopsy but I thought it was pretty funny!

Frankly, the pain was worse than I expected. I did the procedure without any sedation and just lidocaine to numb the area, but I could feel it every time they took a sample out. It felt like a tooth ache, but for the bones in the top half of my leg. They did 4 aspirations and 1 biopsy. They had to remove a piece of my bone in my lower back, right where the back dimples are. They let me look at the samples afterward, and I was surprised to find out that bone marrow is a dark red color. I always expected it to be a pale yellow!

Now, I’m just tender in that area, and I’m not allowed to shower for 2 days. As long as the wound doesn’t touch anything, I don’t even feel anything.

Pulmonary Function Test

I had to do a Pulmonary Function Test (PFT) yesterday to get a baseline understanding of my lung function. I found the test challenging but fun, because the tech who performed the test was doing some very interesting stuff during the test. I had to sit in a booth like this one and plug my nose for the test:

The basic idea of a PFT is that they have you breathe into a tube in various ways, and the machine measures the amount of air that you can take in and push out. Apparently, getting people to breathe the right way is kind of an art. He was acting like a conductor of an orchestra: waving his arms around, singing “breathe, breathe, breathe, breathe!”, and even standing up and sitting down to emphasize the magnitude of breath that was required. Tyler’s dad says that there are studies to support the importance of acting like this during PFTs to get the most accurate results. I loved it! I also felt like I was going to pass out!

Songs I’m Listening To

• Can we go home now - The Roches

• Bulletproof - LaRoux

Should I get eyebrow microblading?

I have no way of knowing whether I’ll lose all of my hair, or lose very little hair. Some people decide to get a semi-permanent tattoo of their own eyebrows before starting chemo because it helps to maintain consistency in at least one part of your appearance. The tattoos can last for different amounts of time depending on many factors, but given how light my natural eyebrows are, they would likely fade relatively quickly. I’m not completely sold, but I am interested. Thoughts?

Funny Surgeon Story

At one point yesterday, my mom and I got into an elevator and realized we had no idea where we were going next. A really nice thing about MD Anderson is that patients and medical professionals alike will immediately offer to help if you look lost (which I always do). While my mom and I were trying to figure out where to go, a surgeon and a woman in a wheelchair came into the elevator. The surgeon immediately offered to come with us to help point us in the right direction. Before we got off the elevator, though, the woman in the wheelchair reached her floor. As she got out, the surgeon said: “Feel better, I love you!”. My mom and I were impressed that a surgeon would be so sweet to a patient! Then, as we talked to her a bit more, she shared that the woman in the wheelchair was her grandmother. That makes a whole lot more sense!

What’s Next

In order to get chemo in Portland, I’ll need an oncologist there to order the chemo. I’m waiting to get scheduled with a Lymphoma specialist at OHSU, a research hospital in Portland. If they can get me scheduled next week, then I’ll head back to Portland right away so that I can start the process of getting chemo ordered. However, if they can’t get me in for a couple of weeks, then I’ll start doing the fertility protection and get the port put in from Houston since I’ve already established care there.

Thanks for reading

I’ll send an update here when I get more news about scheduling! Please enjoy a selection of photos I took during my trip to Houston:

More hospital art:

An unbelievable collection of boots:

Is this fish pregnant?

The fertility clinic used flowers to tell you which door to wait next to:

I appear to have either Stage 1 or 2 Hodgkin’s Lymphoma. I’m going to meet with a Lymphoma specialist at MD Anderson (still waiting for scheduling) and then I’ll finally start treatment. I’m planning to return to Oregon as soon as possible but it will depend on the scheduling with MD Anderson.

How to best support me

This situation has taught me a lot about what I need from the people around me during a tough time. I think everyone wants different things in a situation like this, so I wanted to communicate the ways that I would personally love to receive support. I am so lucky to have wonderful people in my life that want to help in any way they can. This section is for people who might not know what’s helpful!

The biggest request I have is for people to call me. I’ve been incredibly lucky to be in Austin during this time because I have been surrounded by people I love, and there has been no better distraction than that. However, when I go back to Portland, the long haul of chemotherapy will begin, and it will completely shut down my immune system. That will mean that I have to act like it’s March of 2020 again. No hanging out with anyone in person. The best way you can help me through what will certainly be an isolating time is to call me on the phone!

The other request I have is to send me media recommendations or physical media! I have a DVD player and would love for my movie-lover friends to send me DVD’s that they think I’d like. Other physical media that I’d be happy to receive are books, records, and CD’s! I’d also love recommendations on tv shows, movies, music, and books.

I also love playing video games! I have a switch 1 and 2. I would happily accept your old game cards that you don’t use anymore! Or you could give me recommendations on your favorite games. I love Zelda Breath of the Wild, puzzle games, and cozy games.

PET Scan Results

I received some PET scan results within a few days of my biopsy, so I did have confirmation that this mass was hypermetabolic. The really important takeaway from the PET scan results is that they indicate that I have either Stage 1 or 2 (that’s good news!). The cancer hasn’t spread much beyond this mass.

The reason that PET scan results report on the hypermetabolism is that PET scans work by injecting you with a “radiotracer”. The radiotracer is basically a radioactive sugar water. Cancer (as well as your brain) tend to have a high metabolism so the scan can see where the radioactive material was immediately metabolized in order to detect the metabolism in different parts of your body.

I found it really fun to look at the actual PET scans. Below is one of the views that I found the most helpful to look at. The black spots indicate where the radiotracer was detected. Note that the brain lights up, as well as the bladder. These are expected to light up in a PET scan because your brain has a high metabolism and the excess liquid goes to your bladder. I believe the dark spots in my abdomen are the liver and kidney filtering the liquid (also expected).

The caveat to PET scan results is that technically there are non-cancerous reasons for certain areas in your body to show up as hypermetabolic. For example, infections can show up as hypermetabolic on PET scans. However, for a mass in the anterior mediastinum, a positive PET scan result is highly suggestive of cancer (especially given the symptoms I had). In my last post, I incorrectly wrote that PET scans can confirm cancer. Sorry about that!

The impressions from the radiologist are as follows:

1. Hypermetabolic lobulated anterior mediastinal mass, abutting the left anterior chest wall and is inseparable from the anterior pericardium and abuts the major mediastinal vessels predominantly the main and left pulmonary arteries. Additionally, there are few hypermetabolic prevascular lymph nodes. Differential includes lymphoma or thymic malignancy. Correlate with tissue sampling.

2. Background marrow activity is slightly above normal physiologic limits likely related to marrow stimulation

This means that (1) the mass in my chest is hypermetabolic and pressing against the front of my chest as well as some major arteries. There are also a few hypermetabolic lymph nodes near the mass. These extra hypermetabolic lymph nodes may mean that this is Stage 2, but I’ll need to confirm that with the Lymphoma specialist. (2) means that the bone marrow appears a bit more active than normal but that is expected for Lymphoma.

Core Biopsy Results

The core biopsy reported a diagnosis of Classic Hodgkin’s Lymphoma, nodular sclerosis type. This is the comment left by the doctor who analyzed my tissue sample:

The biopsies show extensive sclerosis with few areas containing medium to large atypical lymphoid cells, immunophenotypically compatible with Hodgkin Reed-Sternberg (HRS) cells. The overall findings support a diagnosis of classic Hodgkin Lymphoma, most likely nodular sclerosis type.

Around 95% of people with Hodgkin’s Lymphoma have nodular sclerosis type. I will warn you that there is JUMP SCARE if you look at the Nodular Sclerosis wikipedia article (link for anyone interested). Sclerosis means hardened tissue, so nodular sclerosis just means that there are hardened nodules throughout the mass.

Staging

I haven’t received confirmation yet on what stage I have, but it appears to either be stage 1 or 2. There are also a couple of modifiers for stage in Hodgkin’s. These modifiers help to understand the best treatment options.

One modifier is whether you have shown “B symptoms” such as night sweats or itching. If you show B symptoms, your stage number is followed by the letter B.

Another modifier is bulky disease, which is classified by the American Cancer Society as:

• Tumors in the chest that are at least ⅓ as wide as the chest, or

• Tumors in other areas that are larger than 10 centimeters (about 4 inches) across

I am just under the threshold for bulky disease, so it’s unclear whether I will have this modifier. My chest is on the smaller side, so it’s possible that the mass is at least ⅓ as wide as the chest.

Immunotherapy

This section gets a little dense on the medical terminology. Feel free to skip it if you aren’t a medical nerd! The big takeaway is that there have been exciting advances in Hodgkin’s treatment in the last few years and that my treatment may have fewer side effects than I expected.

My initial research exclusively named ABVD as the standard of care for early stage Hodgkin’s. However, I did a deeper dive on treatment options this week and realized that there have been very promising results in several trials for Nivo-AVD: a combination of immunotherapy and chemotherapy that uses a drug called Nivolumab instead of Bleomycin.

Here is a brief overview of what each drug does in ABVD (source):

• Adriamycin: stops DNA from moving, causing cells to die.

• Bleomycin breaks DNA strands, killing cells that are not resting.

• Vinblastine stops cells from dividing by messing with microtubules.

• Dacarbazine damages DNA, stopping cancer cells from growing.

One of the unfortunate things about Reed-Sternberg cells (the characteristic cell for Hodgkin’s) is that they tend to not die when they are meant to. That is why the Bleomycin is helpful for this chemo regimen: because it does kill cells. However, it also kills cells that you don’t want to kill.

The biggest risk for Bleomycin is lung toxicity. Given my age, I really don’t want to be dealing with lung damage for the rest of my life. If the alternative is dying from cancer, I’d pick the lung damage. But there is another option: Nivolumab. Also, to be clear, there are even more options than these two, but this is the only one that has shown better results than ABVD for both survival rates and side effects.

After spending a few days looking through the research on Nivo-AVD, I had the idea to search “Nivolumab Hodgkin” on Spotify to see if there were any podcasts discussing the topic. I’ve been looking for podcasts on this topic because for the most part, any podcast that has Hodgkin’s in the title is actually pretty well researched and helpful.

The particular podcast that I found was called “WolverHeme Happy Hour” and it is a podcast by and for hematologists. The premise is that two hematologists crack open a beer and talk about the newest hematology findings. Riveting stuff! Here’s a link to the episode on Nivolumab and Hodgkin's. If you’re not on Spotify, they also upload to Apple Podcasts. The biggest takeaway was that all four of the hematologists (they have guests!) agreed that going forward, Nivo-AVD is going to be their recommendation for Hodgkin’s patients, regardless of stage.

I asked my doctor (who is not a Lymphoma specialist) whether he thought Nivo-AVD would be the recommended treatment for me, and he didn’t have a strong answer because he doesn’t usually provide recommendations for Lymphoma patients. However, he did check the treatment algorithm for Hodgkin’s in his system, and it said that Nivolumab was only recommended for late-stage Hodgkin’s. He did note that the last time that they updated the algorithm for Hodgkin’s treatment was November 2024, and that Lymphoma specialists might have different recommendations based on the research available to them.

~~~Completely Optional Section~~~

A Sweet Story

While I was waiting in line for blood work at MD Anderson, I was standing near a woman who had complete alopecia, so it was clear that she had done a lot of chemotherapy. Another woman walked into line with her young baby in a stroller. The woman with alopecia told the mother that her baby was adorable, and that she had a baby around that age at home.

The mother told her that she had breast cancer and that she had found it while pregnant with her baby, then immediately started chemo after giving birth. The woman with alopecia looked surprised and said that the same thing had happened to her. After she got past the shock of the coincidence, she looked really happy to have found someone else who understood her very unique experience. She said she hadn’t met anyone else that had gone through that before.

I really appreciate seeing the camaraderie between the patients at MD Anderson, because it really is isolating to be going through cancer.

Thomas Hodgkin

Thomas Hodgkin was a prominent pathologist in the 1800’s who provided the first account of Hodgkin’s disease in 1832. He was a Quaker (!!!) from England, and he seemed like an all-around great guy. At 50, he became the guardian of an Australian Aboriginal child. He was in support of the abolition of slavery and the reduction of impact of western colonization on indigenous populations around the world. I think it’s kind of cool that I have a cancer that is named after a person.

Should I buy this puzzle table??

I probably need this, right?

How I explained this to my 3 year old nephew who loves to hear about medical problems

I have an owie in my chest that’s the size of an orange. There are owie cells that make me sweat while I’m sleeping and make me all itchy and hurt my arm when I drink grown-up drinks. I’m gonna have to take a lot of medicine to fix the owie. The medicine is probably going to make me bald… don’t you think I’ll look silly bald?! But the medicine is going to make the owie cells explode.

This is when Jesse chimed in in his characteristic way: continuing the story from the perspective of “Jesse-zilla”. He said that Jesse-zilla had a hammer that exploded the owie cells! I love him!

Thanks for Reading

If you’ve reached this point, WOW you read a pretty long post! Good for you! Here’s a little reward:

To summarize: On Thursday, I got a PET/CT scan and today (Friday) I got a core needle biopsy in my mediastinum (chest between the lungs). I’m waiting on results for both of them, but next week will be a little slower because of the holidays. It’s unclear when we’ll get either result, but they set expectations that it could be a week from Monday. The PET scan results will come sooner but they can only confirm that this is cancer and whether it has spread. The PET scan cannot diagnose which kind of cancer it is.

PET Scan

I was really pushing to get my PET scan earlier than my biopsy (see last post for details). When I found out that my biopsy was moved up to Friday, I started taking the scheduling of my PET scan into my own hands. I’m really happy that I did, because it actually did make a difference.

I realized that my insurance approval was the reason that the schedulers couldn’t schedule the PET scan, then realized that insurance actually had approved the PET scan, then had to call a number of people to help them reconcile the approvals on the MD Anderson side. All of this was necessary for them to actually check the schedule and realize that there weren’t any openings. UGH. But that didn’t stop me! I called all of the MD Anderson radiology centers to check for availabilities, and finally reached a kind man who had an idea to check for openings in an imaging research center where they don’t usually take regular patients. He found me a spot where there wasn’t one and I am so grateful to him for that!

The imaging center reminded me of the radiological center where I had gotten my CT scan last week: pristine and calm. They injected me with a slightly radioactive material and left me in a dark room to nap for an hour. Then I went to get the scan and it went very smoothly. At that point it was 2PM and I had been fasting the entire day, so I was hungry in a way that I hadn’t been in a long time. Here’s a video of me eating Chick-fil-a afterward:

Biopsy

This morning I went to get blood drawn and then went into the Interventional Radiology center to get my biopsy. They took me to a room with a CT machine and gave me some sedatives to help me relax. I was half asleep during the procedure.

I thought the way that they conducted the procedure was pretty interesting. The basic idea was just to stick a needle between my ribs and extract cells from the mass. The tricky part was navigating my chest without nicking my aorta or puncturing my lung. They achieved that by sticking the needle slightly into my chest, then doing a CT scan and checking where the needle was, then pushing it a bit further in and repeating that process until they positioned the needle in the correct place. Overall the pain wasn’t bad, but there were a couple moments where I let them know I was experiencing more pain and at one point they actually gave me fentanyl.

I was very sleepy after the procedure because of the fentanyl and the sedatives. I slept for a few hours in the recovery room. When I woke up, they gave me a chest x-ray to make sure that I didn’t get a pneumothorax (collapsed lung). I didn’t have one, so they gave me the go-ahead to eat (this time I fasted until 3:30PM) and once again I ate Chick-fil-a in the style of Fantastic Mr. Fox. I would like to get the Chick-fil-a sauce administered intravenously.

Now I’m feeling a bit sore in my chest but it’s not too bad. I’m supposed to take it easy for the next 24 hours. There won’t be a lot of wound care because it was just a sterile needle in my chest.

What’s Next

Next week is Christmas, so there’ll be a skeleton crew at the hospital. But it’s a gigantic hospital, so even a skeleton crew is pretty big. As I said at the top, we might not get a confirmation of the results until around Monday 12/29. The PET scans might offer some information such as confirmation that this mass is cancer, and information about whether it has spread.

If the results come back positive for Hodgkin’s Lymphoma, I’ll be referred to a Lymphoma specialist (likely a Hodgkin’s Lymphoma specialist) and start my treatment plan. If the results come back negative for Hodgkin’s Lymphoma, I’ll get an excisional biopsy in case the result was a false negative.

Personally, I’ll be trying to focus on spending time with my nieces and nephew before I’m immunocompromised by chemotherapy (children are germ machines unfortunately!). I’m going to spend as much time as I can with friends and family.

Thanks for reading!

If you’ll be in Austin this week, I’d love to hang out! I wasn’t sure if I’d want privacy at this time, but I’ve actually been feeling much better spending time with people I love <3.

Please enjoy some hospital art that I thought was kind of neat:

As well as some photos I took in the waiting room of a magazine feature on Jimmy Carter:

To Summarize: Today, I had my first appointment at MD Anderson with an internist. My mom flew out to Houston for emotional support and we’re staying near the medical center. The most important update is that I am scheduled for a core needle biopsy on Monday (12/22) and a PET scan on Tuesday (12/23). The internist agreed that the most likely diagnosis is Hodgkin’s Lymphoma but of course nothing is confirmed until the biopsy results come back.

The Biopsy and PET Scan

The doctor confirmed my understanding of the biopsy options (see the last post “What’s Next” section for more details). We’re starting with the less invasive option: a needle biopsy. Needle biopsies are only about 90% accurate as compared to >97% accuracy in excisional biopsies (study). So if the results are negative in the needle biopsy, I’ll need to get an excisional biopsy to confirm the diagnosis. Let’s hope I don’t need that!

In addition to the biopsy, I’m going to get a PET/CT scan. PET/CT scans are a special type of CT scan that helps determine if the cancer has spread to any other parts of my body, because “cancer cells show up as bright spots on PET scans because they have a higher metabolic rate than do typical cells” (Mayo Clinic).

I’m currently trying to get my PET scan moved up to be sooner than my biopsy. I’d prefer to get the PET scan before the biopsy for a few reasons:

1. The PET scan could help to identify “hotter” (e.g. more cancerous) spots in the mass in my chest. This could help improve the accuracy of the needle biopsy and reduce the chance that I need an excisional biopsy.

2. The PET scan could also determine if there are other lymph nodes outside of my chest that could contain cancerous cells. This is helpful for a couple of reasons:

   1. If the biopsy can be completed outside of my chest, we can get more accurate results with a less invasive procedure.

   2. If this is Hodgkin’s Lymphoma, the PET scan will help determine the stage of cancer, which is key for the treatment plan. I am eager to know what stage I might have.

My Doctor

I really enjoyed talking with my doctor. His name is Edwin. I appreciated his balance of offering validation while focusing almost entirely on the facts of the situation. He was respectful and understood that my highest priority was understanding the situation as well as I could. My mom and I talked with him for about an hour and went through a laundry list of questions that we had compiled the night before.

One of my questions was whether I could have a video or image of the CT scan. He let me take this video:

He’s a pulmonologist (lung specialist), so he didn’t have answers to every single question about Hodgkin’s, but he was happy to double check his resources for information on things like determining the stage of cancer for Hodgkin’s, symptoms, etc. He described himself as “the on-ramp to a super highway”. MD Anderson is an enormous operation and cancer care requires a lot of doctors to be involved. We might not meet with him in person again, but he’ll be coordinating procedures and communicating results until we reach a formal diagnosis.

We also had a very friendly nurse named Chiqui who was having terrible technical difficulties. I tried to help but gave up after my recommendation that she restart her computer did not work.

Differential Diagnosis (What Else Could This Be)

Right now, Hodgkin’s Lymphoma is the most likely diagnosis given my symptoms. However, today I learned that in the medical field, the diagnoses associated with an anterior mediastinal mass are called “The Terrible T’s”. Please enjoy this graphic I found of Mr. T in front of a list of T’s (to be clear, I did not make this):

The mass was found in the left anterior mediastinum (pronounced media-sty-num), which is the area in the center of the chest, between the lungs. At this point, we’re mostly trying to figure out what that mass is.

I will spare you the details of each T. From what I’ve gathered, my symptoms align closely with Hodgkin’s Lymphoma, but it is possible that it’s one of the other T’s. We’re particularly trying to rule out Teratoma and Thymoma. The only way we’ll know for sure is through a biopsy.

Fertility

A well known side effect of some chemotherapies is infertility, so I made sure to ask my doctor about that. I had already found some evidence that the particular chemo regimen that is typically used with Hodgkin’s (ABVD) is not associated with causing infertility (see this study).

My doctor didn’t know off the top of his head whether the chemo regimens used for Hodgkin’s typically cause infertility, but he ensured me that MD Anderson has extensive options for fertility protection (measuring fertility markers, harvesting eggs, etc.). The tradeoff for fertility protection is that it would delay the start of treatment, so it will also depend on the speed that the tumor is growing.

My Emotional State

I think everyone has been wondering about how I’m doing with this news. I’ll admit that after my first appointment with the PA, I sobbed in my car all the way home. The following few days waiting on the bloodwork, chest x-ray, and CT scan results were agonizing because everything was unknown. Plus, when you tell someone that you suspect you have cancer because you read about it on Google, they tend to think you’re going a little bit crazy, which makes you feel like you’re going a little bit crazy.

The funny thing is that when I got the CT scans back, I felt more calm than I had felt in days. I find a lot of comfort in planning and understanding. If I can wrap my head around a problem, I end up focusing a lot more on the solution than on the problem itself. The night that I got the CT scans back, I stayed up until 4AM researching the typical chemotherapy regimen for Hodgkin’s, and understanding the ways that it might affect me. I also found comfort in watching videos that Hodgkin’s patients had posted online of their experiences getting chemo.

My doctor told me today that “it would be normal to have 110% anxiety right now”. I’m definitely feeling anxious, and I would love more than anything to get some more certainty on my diagnosis and my future. At the same time, I’m feeling very grateful for the people around me who have been so supportive and loving through the entire process.

I’m also finding a lot of comfort in music right now. The walk to the medical center is around a mile and I had a nice walk to my appointment this morning. I listened to lots of Elvis Presley as well as some Motown hits. I’m really enjoying Wilson Pickett’s cover of Hey Jude.

Houston

As a side note, I’m enjoying staying in Houston. We were very lucky that my brother-in-law’s parents have an apartment right next to the medical center and generously offered for my mom and me to stay there.

My mom flew out to meet me in Houston and offer emotional support as well as note-taking during all of these appointments and procedures. She went to college around here at Rice, so she’s having fun showing me around. She lived in Houston in the 70’s, so there are parts of town that are completely unrecognizable to her now. The Rice Village used to be just a run-of-the-mill grocery store and a couple places to eat, but it’s now a luxury mall. Yesterday, we went there to buy her a pair of athleisure trousers and then we got Spanish food for dinner. Tonight, we got dinner at her old favorite barbeque place, Goode Company. We shared a brisket poboy and it was nice to have some comfort food.

Nutrition and Diet

I’ve been hearing a lot of advice about diet and nutrition choices when you’re doing chemo and even before you start chemo, so I made sure to ask my doctor about it. I’ve heard that if I’m expecting to be going through chemo, I should try as hard as I can to gain weight because it can cause weight loss due to nausea. On the other hand, I’ve heard that I should eat healthy and that cancer loves sugar. I brought up nutrition to my doctor and appreciated his advice: I should eat what makes me happy. He also said that there would be absolutely nothing wrong with me gaining weight right now. All of that said, I’ll definitely meet with a nutritionist at MD Anderson if I end up doing chemo.

Chemotherapy Plan

If I am diagnosed with Hodgkin’s, the most likely treatment is chemotherapy. Chemotherapy isn’t too complicated to administer, so I can do that from anywhere. If I do chemotherapy, I’d like to do it in Portland. I’d be most comfortable in my home.

The length of time that Hodgkin’s patients undergo chemotherapy depends on the stage. For early stages, 3-6 months is a common length of treatment. Later stages require longer treatments and sometimes require other kinds of treatments like radiation. All of this is of course completely up in the air, and will depend on the exact diagnosis I get.

What’s Next

Hopefully I can get the PET scan moved to this week, but at this moment I only have the following appointments scheduled:

• Friday (12/19): Consultation for the biopsy. I’m trying to see if I can do this appointment through telehealth so that I don’t have to wait around in Houston this whole week. If I can do a telehealth appointment on Friday, then I could be in Austin until Sunday.

• Monday (12/22): Core Needle Biopsy (Image Guided). I will undergo local anesthesia, and they’ll put a large needle between my ribs to extract cells from the mass. They’ll use a live CT scan to guide the needle through my chest and not knick any arteries. The results should take around a week to analyze.

• Tuesday (12/23): PET/CT Scan. The results should come back quicker for the PET/CT Scan so that might provide some helpful information before the biopsy results come back. The appointment described the timeline of the procedure: After the injection, you will relax alone in a room for 45-90 minutes. The scan ranges from 15-40 minutes. From start to finish, you should plan to be in the PET department for 2-3 hours.

Thanks for reading!

Thanks again to everyone who has sent me kind messages in the last few days. I really do appreciate it! I’ll make sure to post an update here as soon as I get any further results or updates.

To summarize: there is a large mass around the size of an orange in my chest, and along with the symptoms I’m experiencing, it currently seems likely that I have Hodgkin’s Lymphoma. Hodgkin’s Lymphoma is highly treatable (~97% survival rate for my demographic) through chemotherapy. I currently need a biopsy to confirm that diagnosis. Lymphoma is a blood cancer so the mass is not exactly a tumor, it is likely an enlarged lymph node that contains the cancerous cells. It will go down to its original size through treatment without being removed.

Symptoms

The symptom that finally made me go to the doctor was a very unique issue that no one I’ve spoken with had ever heard of (including doctors!). I was experiencing a diffuse but intense pain in my left arm after even one sip of alcohol. Didn’t matter if it was beer, wine, or liquor, and it lasted around 30 minutes. I thought that the pain was strange but I thought it might be related to blood pressure. I completely stopped drinking after the first few times because it was very uncomfortable when it happened. I was going to wait until I established care with a PCP in Portland in January, but luckily when I told Victoria about it (BIG shout out), they told me that I should go to the doctor as soon as possible. Turns out it is a rare but very established symptom of Hodgkin’s Lymphoma, and that has been the most important guiding symptom for the diagnosis.

The first symptom I experienced was night sweats. I have never been a hot sleeper so I noticed right away when they started. They started a couple months before my move to Portland, so I’ve been experiencing them for almost a year. I had chalked them up to stress around moving, but they were actually pretty intense. I would wake up and my clothes and hair would all be completely drenched. This has been happening regularly but not every night. I had gone as far as buying a cooling blanket to try to regulate my temperature at night (which didn’t really help). At one point I considered getting this adult size sleep sack LOL:

The other symptom that I’ve been experiencing has been intense itchiness all over my body. I’ve been experiencing the itchiness for a few months, and it started around the time that the seasons changed in Portland. I assumed that it was related to the heating in my house and was probably due to dry skin. I started using only eczema-approved products and moisturizing my entire body every day with both moisturizer and vaseline. That didn’t really help much.

In retrospect, there were a couple of symptoms that are associated with Hodgkin’s that I had been experiencing but wasn’t even thinking of as issues. One symptom that is associated with Hodgkin’s is fatigue. I had started napping more but I hadn’t thought much of it. I also started getting retinal migraines (an aura without pain), which are apparently associated with fatigue. If you’ve never seen retinal migraines here is what it looks like:

I would also sometimes cough when I took a deep breath.

The big symptom that I didn’t have was (visibly) swollen lymph nodes. I don’t have any swollen lymph nodes outside of my chest.

Also, I have a family history of Hodgkin’s. My grandfather died of Hodgkin’s in the mid 1960’s before there was a treatment available.

First Visit with the Doctor

My first visit with the doctor was on Monday 12/8. I met with a PA because the internist that I had been seeing in Austin had recently left the practice. I really liked my PA because she reminded me of Maria Bamford in both appearance and mannerisms. Imagine this woman being the doctor that finds your cancer:

She took my concerns really seriously and after examining my lymph nodes, she decided to order complete bloodwork and a chest x-ray. The bloodwork came back quickly, and it was relatively normal. I had slightly high white blood cell, neutrophil, and platelet counts, and slightly low lymphocyte counts. I also had a slightly elevated erythrocyte sedimentation rate. The chest x-ray came back with a report of an opacity on the left side of my chest and the report recommended a CT scan.

The CT Scan

The day after the chest x-ray came back, I went to get a CT scan. I found the radiology center to be very relaxing because they were efficient and organized. There was also a sense of camaraderie between the patients because everyone there was going through some kind of health issue.

When I sat down to get the IV put in, the woman next to me remarked that she “wished it tasted better, like chocolate or cinnamon or something”. I asked her what she meant because I was just getting an IV put into my arm, and her and the tech looked at each other and told me that I would understand in a few seconds. Like clockwork, after a few seconds I tasted plastic in my mouth! It’s wild how quickly blood is moving through you!

After that, I went to get my CT scan. If you’ve never gotten a CT scan, it looks like this:

It reminded me of when I got a CT scan for a concussion as a first grader and I referred to this machine as “the big donut”.

I got contrast in my CT scan, which I had never experienced before. Contrast is probably better explained by the Mayo clinic:

A special dye called contrast material is needed for some CT scans. The dye appears bright on images. So it makes certain areas of the body that are being scanned show up better. This can help make blood vessels, intestines or other structures easier to see.

The really interesting thing about the contrast was that it makes you feel a warm sensation wherever it is in your veins. They gave it to me through an IV, and immediately I felt the warmth going through my veins. The funniest part was that it made me feel like I was peeing my pants! I said that to the tech and she assured me that I wasn’t peeing.

The CT scan came back with the following results:

1. Left anterior mediastinal mass extending into the left upper lobe and measuring 8.0 x 5.4 x 4.8 cm. The possibility of malignancy should be considered.

2. No evidence of metastatic disease in the abdomen and pelvis.

(1) is saying that there is a mass about the size of an orange on the left side of my chest. Yikes! But (2) is saying that it doesn’t appear to have spread outside of my chest, so that is good news.

What’s Next

I decided that I wanted to go to MD Anderson in Houston for diagnostics and treatment planning. MD Anderson is known to be one of the best cancer centers in the world! It’s lucky that I found this while visiting Austin, because I might have wanted to travel to Texas to go to MD Anderson even if I had caught it in Oregon. On top of having world class experts on every type of cancer, MD Anderson is known for being very thoughtful and guiding patients through the process with care and kindness.

I’m scheduled to meet with an internist (Edwin J. Ostrin) at MD Anderson on Tuesday (12/16) at 11AM. The internist will probably refer me to a Hodgkin’s specialist and/or schedule a biopsy with a surgeon.

There are probably going to be two options for the biopsy:

1. If the mass in my chest is accessible through my rib cage, the doctor might put a large needle between my ribs and extract cells out of the mass. This option is less invasive and I would only need local anesthesia.

2. If the mass isn’t accessible through my rib cage, the doctor might have to access my chest with a scope that they insert just above the clavicle. I would have general anesthesia for this option. The risks are pretty low for this procedure but it’s definitely more invasive than option 1.

I was told to expect to stay in Houston for around a week, but it’s unclear how long everything will take and whether it will actually be a full week. Tyler’s dad is an internist and he said that he thinks it will be less than a week.

Thank you for reading!

I think my future posts will probably be shorter and contain more photos! I wanted to include any/all information that I could think of because I’m sure some people are feeling curious and want to understand what’s going on better. I’m happy to answer questions! Love you all!