I have survived my first week, 5 full days of of high-dose IV interferon infusions, and let me tell ya – it has been a roller coaster so far. Just to recap, Interferon is a systemic immunotherapy drug that harnesses the body’s own immune system to fight off targeted undetectable cancer cells. The first month I have to go to the outpatient cancer center at MGH (Yawkey Center) for IV infusions of high-dose alfa interferon 2b for 5 days a week for 4 weeks. This is called the induction phase, and it’s a real bitch. Not as big of a bitch as Melanie, though, which is why I am doing it.
As a warning, I have included a lot of (probably unnecessary) detail in this post, if you want the quick and dirty update, hit up the Timeline and scroll down to the bottom
The Treatment Process – Day 1 –
On the first day of my treatment (Monday August 29th), I walked into Yawkey 7E (the melanoma/cancer center at MGH) with a really confusing half-smile/care bear stare on my face. I was smiling because I was excited to finally start throwing punches at Melanie (on a cellular level). It had been 2 months and one day since I was diagnosed and ever since day 1 I had been wanting to attack my cancer like a banshee (shout-out to all the Brandeis Ultimate kids reading this) and I was finally getting the chance. Of course I was also nervous and a tiny bit scared, I had been reading up on Interferon and none of it sounded pretty. These two things combined led me to have this really strange half-smile/freshman on first day of school/deer in the headlights kind of look, but nobody questioned me. In usual fashion, my parents had already been in the Yawkey waiting room for 30 minutes before I even left my apartment and when I arrived I was still 15 minutes early. This situation is extremely similar to when we travel as a family. My dad makes sure we’re all at Logan airport 3 hours early for a DOMESTIC flight, I’m usually stuck in the middle seat between my parents, and we all have bags under our eyes because my dad only schedules us to fly at the ass-crack of dawn. Sitting in the waiting room at the melanoma clinic, everything is the same, except of course we aren’t traveling anywhere fun.
The first day of every week the appointment is much longer because there are actually 3 appointments. 1) They need to take blood & run labs, 2) meet with my oncologist and/or NP, and then 3) do the infusion. The labs are quick and the phlebotomists are well trained so they usually never have to stick me more than once. They call me in, stick a needle in my vein, and fill up TEN TUBES of my blood. The first tube fills quickly, but the second one already starts to slow. The tech puts the tourniquet back around my arm and we are back in business.
Next I meet with my oncologist and an NP, whom I have never met before, but I see on my schedule that we will become great friends. My oncologist, Dr. Lawrence is such a great guy. He gives us a lot of information but never rushes. He spent a good 10-15 minutes alone consoling my mom and providing her with encouragement and resources. My mom is empathetic to a fault, so this is really important to all of us. The NP is named Riley, she is young, accomplished, intimidatingly smart, and very informative. I will be meeting with her just as much, if not more than Dr. Lawrence for the first month of treatment. Right off the bat she corrects one of our big misconceptions about interferon. We were all under the impression that treatment wasn’t going to be so bad for the first couple of weeks and that the symptoms would get worse towards the end of the induction phase. This is not completely accurate… Riley tells me that the first two days will be the worst and that I will likely experience terrible flu-like symptoms. These include intense body shaking chills (called rigors), high fever, body/joint aches, headache, fatigue, loss of appetite, nausea, etc. The exact mechanism is not well understood (and if you know please enlighten me). Pretty much this flu-like reaction is my body’s immune system waking up and preparing to attack the cancer. Riley gave me a lot of medications to combat these symptoms including alternating Tylenol & ibuprofen, ativan for anxiety/nausea, and compazine for nausea and headache. She said that after the first few days, the chills and fever should stop but the other symptoms like fatigue and muscle aches should continue to build. Awesome. Finally after a couple of hours they send me up to the 8th floor for my infusion.
Feel free to check out the full, free-range organic menu of interferon side effects that I may experience throughout my treatment. They also briefly describe the mechanism of interferon as well. Please note, even though the website is called “chemo care” Interferon is not a chemotherapy treatment. Is a biological response modifier AKA immunotherapy.
Infusion Day 1:
Guess what, more nurses! Just like people have primary care physicians, I get a primary infusion Nurse. I get to see her 4 out of 5 days/week, which is great for care continuity, especially when their job is to poke you with needles and pump you with cancer killing fluids. She is young, and peppy, and very nice. I won’t use her name just yet because I forgot to ask her. The infusion room is bigger than my entire apartment by a lot. There are 4 infusion chairs for patients in one big open room so you can see everyone else. However, there is an option to close a curtain around your little area in case you want some privacy. I haven’t closed, mine and probably never will. I secretly want to talk to all the other patients about their experiences but so far I have only been successful once. I should mention that I am the youngest person in the clinic by about and average of 30 years. I have been lucky enough that my nurse schedules me in a chair by the window every day so I get to look at the awesome view of Boston while being pummeled by interferon.
So for the infusion, they start by pre-medicating me with almost a gram of tylenol. I forgot to mention earlier that I signed up to donate more of my body in the name of science and future melanoma research. So once I got to the infusion room, they had to take 3 more tubes of blood from me. That was pretty much cake compared to the 10 tubes a few hours prior. So first they put an IV in me and hook me up to 500 mL of normal Saline (0.9% sodium chloride which is essentially just water and salt – electrolyte replacement). It’s very important to stay hydrated with interferon so they pump you full of fluids. Usually after about 10-15 minutes, they bring out the big guns, which is a tiny IV bag of interferon. The interferon IV only runs for about 20 minutes. Once the interferon finishes it automatically goes back to the normal saline, until that finishes too. All told, I am usually hooked up to an IV for about 90-110 minutes. Other wonderful things about the infusion center is it’s like a cancer spa! When you walk in they give you a couple bottles of water and a warm blanket. Then they offer you a plethora of free beverages and snacks. They also have acupuncturist and a massage therapist that walks around and can schedule you in fo’ free! I haven’t gotten to indulge in either of those things but you all know how much I love free snacks.
Post-infusion Day 1:
They said the symptoms would start kicking in usually around 2-4 hours after the infusion. As soon as I got in the car, I already had a headache. My parents wanted to take me out for lunch so we walked to Life alive from my apartment. Standing in line I was starting to get the achy-tired feeling I remembered having when Priscilla the Killah was inhabiting my body. By the time we sat down to eat, I was not hungry and was starting to get small chills. I forced down many bites of a salad I was sharing with my dad (side-note, my dad was so overwhelmed by the hippie-dippy menu at Life Alive, he couldnt even order so I had to do it for him). I took some ibuprofen as soon as I got home and all I could day was lay down. So that’s what we did.
My headache was slowly getting worse, as were the rest of my symptoms. As soon as Lege got home from work, around 6pm, I kicked my parents out so they could get some rest. This is when my symptoms started to get really bad. My head was throbbing, I had chills all over, I couldn’t lay still because everything hurt, my body was aching everywhere and my temperature was rising. At first I was a little silly delirious from the fever and kept Lege entertained. Soon it became much worse. It was like the flu on steroids or crack-cocaine. Eventually I was just writhing in bed and moaning. Lege cuddled me and played some Andrew bird while I squirmed around like a worm. At one point I started laughing maniacally at the facebook picture I had posted earlier that day (the one featured on this post). I was like “what an idiot, I will never smile in that chair again.” As soon as I was allowed to I took my second dose of tylenol. About 70 minutes later my symptoms finally started to dissipate. They continued to decline for the next few hours until I had just a mild headache until I went to bed. I watched a movie with Lege, took 4 ibuprofen and slept through the night until I had to wake up in the morning and do it all over again. Weirdly enough, I felt fantastic when I woke up. Soon I come to realize that mornings are the best time of day for me.
Advent-gift treatment calendar: I forgot to mention that while I was in the throes of interferon pain, one of my old teammates, Betsy, came for a surprise visit and dropped off a big teal glittery box full of gifts for every day of treatment. I was feeling terrible when she came but was so touched I even got out of bed to give her a hug. The gifts/notes are from a plethora of frisbee friends including Vicky, Dory, Amber, Coug, Hannah, Shellco, Saddles, Angela, Murph, Shelly, Blake, and Claudia. Opening the gifts are the best part of my day. Here are the gifts from the first 4 days.
Clinic Infusions days 2-5:
On all other days I just get to go straight to the infusion clinic. Each morning Lege and I get up together. Bike to the T, and take it the two short stops to MGH. Nothing new, they give me tylenol, they pump me with with saline for some time, give me the interferon infusion for 20 mins, pump me with more saline, and then I go home. My mom came for day 2 and Lege stayed until he had to go to a meeting for work. I have awesome new visitors each day! Shira came and visited day 3 and we crushed a people magazine crossword puzzle. Day 4 was Lege and I. Based on the pictures below he’s leaving his job soon to start a new male modeling contract. I mostly distracted him from making a flowsheet for work and made him nuzzle me. Day 5 our “squad ran deep” in the words of Amber. Vicki Chang came over after her shift in the burn unit, and Amber & Coug came as well. I destroyed everyone in scattergories.
Post-infusion days summary:
Each day has been different from the last. Here’s a quick summary of how I felt and what I did after each day.
Day 1: Worst day ever. I learn interferon does NOT fuck around. I was not sure if I was ever going to make it out of bed ever again. Felt like I had the flu on steroids. It was bad, and I was scared about my quality of life. I speak in more detail about this earlier in my post.
Day 2: I am okay for a few hours post infusion, but as soon as my morning meds wear off I have a throbbing migraine-like headache that does not go away for 12 hours. Milder flu-like symptoms this day but nothing compared to day 1. My friend Shira comes to visit after but leaves before my symptoms start to show up. My friend Barbara brings me some ice cream and we chat for a while too.
Day 3: I feel better! I pre-medicate and bike to alewife for some yoga! Turns out only people over 60 go to yoga at 1:30 on a Wednesday. The instructor was very happy to see me. I go out to see a movie with Lege! I even sprinted up and down the escalator without being out of breath. Only symptoms are some mild nausea and lightheadedness. I wake up frequently overnight full of unexplained anxiety, like I want to jump out of my skin. I usually fall back to sleep.
Day 4: I feel great and full of energy! The oncologist says I can go to practice but says I should take it easy and listen to my body. So… I go to brute squad weekday practice! I play the ENTIRE time. I even play well. I even finished all 6 sets of 150 relay-shuttles at the end. I listened to my body and it told me that I had all this pent up eneergy and was not feeling fatigued at all so… yep. I am starting to wonder if interferon is giving me super powers. I worry for a minute that it’s not even working, but then I remember my NP said their is no correlation to symptom severity and efficacy of the drug. I feel lucky so far. When I get home I am HUNGRY and I eat half a loaf of challah, (thanks marsha!). I have mild nausea at night. Finally I take 1 ativan before I go to bed to see if I can sleep through the night and it works!
Day 5: That’s today! Finished 1 full week of infusion! I still feel good. I have only mild muscle soreness. Nothing like what my oncologist predicted I might have. Vicky Negus came over and we did work together, AKA she did work and I continue to write this novel-long blog. We went and threw by the Cambridge Public Library too. When Lege comes home we plan to go for a nice long run to the river and back, then we’ll go see his old roommate who just moved back from Seattle.
It turns out cancer doesn’t grow on the weekends or even Holidays! I have Saturday through Monday off of infusions. I think it’s hilarious that the cancer clinic is closed on labor day but I’ll take it! I’ll restart my high-dose infusions on Tuesday, where I will get labs drawn again and meet with my oncologist. Because of the 3 day break they said it’s possible I will have the flu-like symptoms again on Tuesday, but I’m hoping for the best. I have 3 more weeks of the induction therapy. After that is up I start doing the self administered subcutaneous injections 3x/week (at a lower dose) for 11 months. The doctors say the fatigue will build up, the longer I am in treatment, but interferon has never been schwammed so I am hoping to live a mostly normal lifestyle. See the Timeline for a schedule of both upcoming cancer treatments and life events.
One of my parents friends sent me a TED talk that their nephew gave last year. It turns out he had cancer too. His name is Steven Keating and he discusses his experience with brain cancer but also discusses issues of lack of patient access to their own medical record and data. Being an NP-in-training, I have also been very interested in seeing my own data and cancer cells, and labs but the truth is, we see almost nothing. Getting access to it can be even more difficult, and probably impossible since I am in a clinical trial. Anyway, Steven presents about the hopes of working toward open source medical data collection. That means that patients should have access to all their medical data, and be able to share in the hope that it helps others. One of the points of my writing this blog is to help others, so you can see why this is important to me and anyone else who is dealing with diagnosis. Please check it out, if you are interested.
Finally I want to thank everyone who has been keeping up with my lengthy blog posts and everyone who has been sending food, gift cards, pics, facebook/instagram posts, and sporting their new schwamingcancer tanks, etc. Everything and everyone has been supporting me so much I am practically floating around. If you bought a schwaming cancer tank, please take and send a picture of yourself (or someone else) wearing the tank and I will feature you in my next blog post! Cheers to those of you who already have 🙂
I love you all soo much. Please don’t hesitate to contact me. Also if you have questions about anything I am writing and anything I’m not writing about please shoot me an email. I am always looking for other things to write about in my blog posts. I will continue to post at least weekly through the induction phase of treatment to keep you all updated. If you read this whole post, the next time you see me, whisper “peach is the queen” in my ear and I’ll give you a big ol’ hug.
Love Hard & Fuck Cancer,
Schwam, Schwambomb, Elana, Lany