I came out of week 1 of treatment feeling almost guilty about how well I was doing on interferon. Like I said last week, I felt suspiciously like Interferon was having a rare paradoxical effect on me and was actually giving me super powers! At the very least, I wanted to take advantage of my energy while I had it. Over the long weekend we did juuuuust that.
As always, hit-up the Timeline for the abbreviated, but less humours account of this weeks events.
The Long Weekend
On Friday Lege and I went on a 3.5 mile run that felt no different from any other time… i.e. huffing and puffing to keep up with his go-go-gadget gangly strides. We had no plans for the long weekend because we weren’t sure how I was going to feel but I felt great so at the last-minute I decided, let’s go on a big hike (something I had been wanting to do long before that psycho bitch Melanie came along). I had hiked Franconia Notch shortly after college and it was one of the most beautiful and easily accessible hikes I had ever done. So we decided we would drive up early Sunday morning, hike the 9 mile loop and summit little haystack, Lincoln, and Lafayette. We got a cute little motel room 5 minutes from the trail head that had a nice big pool we got to relax in after. It started off promising but somehow we were both way too over eager about all the delicious food we had just bought at Trader Joe’s, and literally packed all of it. Lege decided he needed 3 sandwiches for the 9 mile hike, I was a little more realistic with 1 for myself. At the end of the hike, neither of us could even stomach one whole sandwich. Not to mention we brought like 8 other pounds of food with us. We had 3 huge honey crisp apples, 3 nectarines, 2 bags of beef/turkey jerky, 1 big bag of trail mix, 1 bag of salami, cheese, and crackers, and cookies as a treat for reaching the peak of Lafayette. I ate one half of my sandwich, Lege ate 3/4 of his sandwich… and the rest of the 8 lbs of food just took a joy ride on our backs the rest of the way. In retrospect, we are idiots and I know that we know full well that was way too much food but our excitement for all the delicious snacks must have clouded our judgement. Regardless, we made it! Thanks to our natural competitive spirits, we went way too fast at the beginning, I was dead set on beating all the women in pink yoga pants to the top. And we beat them, and I only got mildly dizzy once. Here are some nauseatingly pics of us at the top. And huge shout out to Becca for the hiking booots!
After the hike we took a dip in the pool and then slept for 10 hours the next two days to recover. I was WIPED, but it was worth it. Recovering from the hike was my first hint that I was not impervious to the effects of interferon.
Treatment Week 2: Sept 6-Sept 9th
Cancer is not all bad. It’s nice enough to take not only the weekends off, but holiday’s too! I spent labor day sleeping and recovering from the hike. The first appointment of each week is a long one because they need to take blood from me for labs, I meet with Dr. Lawrence/or my NP RIley, and then I have the infusion. I should mention that this week it’s been harder to find working veins in my arms. I am starting to look like an IV drug abuser again. Just a heads up when you run into me. The only IV drugs I am using are interferon and saline.
Tuesday 9/6 – Day 6:
Infusion: Because of the holiday on monday, the cancer center was crazy on tuesday. My mom dropped off more food and gifts from her amazing friends before she took us to MGH for our long ass day. The labs showed my white cell count was normal, but my liver enzymes were slightly elevated but still within the allowable limits of the trial. This is not uncommon due to the known effects of interferon and all the tylenol I have to take. When we met with Dr. Lawrence, he was AMAZED at how well I have been doing and was very pleased with my progress. He continued to warn me though that the fatigue will continue to accumulate and since the 3 day break off interferon, today and Wednesday would likely be rough again until my body recognizes what we are doing again. Finally went up to the infusion floor. It was so busy I was put into a private room, without a view, but it was nice because I was really tired still.
Post-infusion: **vivid yucky imagery alert**
To be honest, I wasn’t feeling great before the infusion. After the infusion, I felt terrible. It didn’t take long and I had a throbbing headache before we left. After I got home I got straight into bed. I couldn’t tolerate looking at a screen so I just laid in my bed in the dark, trying not to make any sudden movements, because now the nausea had started. After a while, I convinced myself to get up to find my anti-nausea pills (compazine and ativan). I finally got them and was about to take them, until I smelled them. Luckily I had brought a “barf-bucket” into the room and luckily it was sitting right next to me. The smell of my anti-nausea pills made me toss my cookies. Probably one of my strengths is finding humor in almost everything. So after I finished emptying the contents of my insides in the toilet (backwards), I found myself giggling at the irony that my anti-nausea pills made me lose my lunch/dinner. I continued to feel horrible until I finally drugged myself to sleep.
Weds 9/7 – Day 7: Infusion
I didn’t wake up feeling chipper, like I normally do. In fact I felt awful still. I was tired, I was cranky, and I hadn’t been able to keep food down for several hours. The picture from that day, shows how I really felt. I didn’t even have enough energy to smile, and I was starting to understand what my oncologist meant by the accumulating fatigue. My Dad met me at the clinic this day and Shira surprised me there later.
Day 7 post-infusion:
Shira and Becca came home with me and I almost immediately fell asleep. I pretty much slept through Becca’s entire visit and I felt really bad but she is a sweet heart and left bananagram message for me when I woke up as well as a really sweet note. Shira was also a doll and cleaned my dishes and heated up some soup for me when I woke. Even after my nap I was extremely exhausted and couldn’t peel myself off the couch for the rest of the day. However, this day I had a big appetite after not eating for 24 hours. I ate a lot. Buuut, the next day I had an aversion to essentially every edible and non edible object in existence.
Day 8 (Thurs 9/8) pre/post infusion: Lege and Barb came and kept me company. I asked and received extra fluid to get ready for the big weekend! I was pretty nauseated the entire day even with pre-medicating with my anti-nausea pills. However I did have really weird cravings for hostess ding-dogs and ho-hos, which I eventually indulged in. School friends Barb and Char came home with me and we hung out for a while. Cassie came over and we went and threw (the frisbee) for a while. I went to practice but I couldn’t stay the whole time because Lege was playing in a secret/fancy roof-top show with his band Baeja Vu. I felt slightly more fatigued at practice but still was able to keep up.
Day 9 (friday 9/9) pre/post infusion: Game Changer – my doctor prescribed me zofran (more powerful anti-nausea pill that is often used with patients receiving chemo). My nausea is gone and I am finding it possible to put food in my mouth again. Sydney and Shira kept me company during the infusion and today I got 1.5 liters of saline – I now consider water balloons to be my close genetic counterparts. Shira and sweet baby Angela came over post infusion. I put them both to sleep at some point during the day. I fed Angela some of my mom’s matzoh ball soup, so you really can’t blame her.
Tonight I’m headed to the pre-regionals potluck with my team because tomorrow I WILL BE PLAYING AT REGIONALS!!!!!!!! Don’t worry everyone, my oncologist approved!
Our weekend regionals schedule can be found here at Fort Devens. You can try to follow us on twitter @100percentBS, but that has proven somewhat unsuccessful sometimes.
Side Note – I successfully wrote my first C-card today.
Angela was attempting to park in a spot we had scouted for a while. Just as she’s about to pull in, this douche bag in a Jeep pulls into said spot. I kindly walk around his car after he gets out, he is already avoiding eye-contact. I said I’m sorry but my friend was just about to pull in this spot, I was just grabbing my parking pass for her. He said, you don’t need a parking pass for this spot (which might be true but is only because it’s signage loophole). Anyway, he was a jerk and didn’t care and walked away before I could say anything else. So Angela had to drive around for a while until she found another spot. I simply left him this note on his car. So hopefully he’s walking around spreading good deeds instead of being an asshole.
Another MASSIVE thank you for the continued love and support that I receive in all forms, everyday. You guys all help me stay strong and hopeful. Secret code this week is sourpatch watermelon.
Schwambomb, Laney, Elana
P.S. snapchat love