You may have noticed that I haven’t been posting picture updates at MGH this week. That’s because I received some surprising news on Monday when I went in for my weekly labs and check-up with my NP Riley & Dr. Lawrence.
Everything started off great at my check-in with my treatment team. I was bragging about how I was able to play at Regionals and how I felt close to 90%, and my treatment team was amazed that I have been able to smile, let alone run around the frisbee field for 8 hours a day. They were like, ” you’re doing great, we’re so impressed, this is really the best result we could have hoped for, we’re gonna share this news with everyone… ” And Dr. Lawrence left the room, and my labs came back and my liver was like, “Nice try, asshats, I am off the charts right now” and without missing a beat, my NP was like “I don’t even have to check the study protocol to tell you that your LFT’s (Liver Function Tests) are way too high for treatment this week.” This caught me completely off-guard. I was like, “how can this be, I feel so good”, (except for that every muscle fiber in my body was like whyyyyyy do you do this to us).
Liver function tests measure how well your liver is working by measuring levels of liver enzymes in the blood (among other things that I won’t go into). The two numbers that we are interested in are the ALT and the AST. The AST is an enzyme that is made inside liver cells, and if this number is elevated it means that there is a lot of this enzyme in the blood stream because the liver has probably been damaged. However, this enzyme is also made by heart and skeletal muscles. My Dad and I theorize, that one of the reasons my AST is so high is because I probably damaged a lot of my muscles this weekend (micro-tears and bruises that are normal from a weekend frisbee tournament… for me) in addition to the interferon damaging my liver. The AST is also a liver enzyme, and high levels of it in your blood usually correlates to inflammation of the liver.
As you may be able to tell from the photo, a normal level for the AST and ALT are under or close to 30 – similar to what my pre-treatment LFTs look like (8/29/16). They were already elevated after the first week of treatment (9/6/16), but still under the allowable threshold for interferon infusions. After the 2nd week of treatment, my AST was 15X the normal limit. I have the liver profile of a life-long alcoholic and I haven’t even drank a beer since I was diagnosed. Before you all get all nervous, this is not that uncommon for interferon treatment. They check my LFT’s every week because it is common for them to become elevated with all the interferon they are pumping into my veins. The other thing is that my bilirubin is normal, which is a good sign. The protocol for this, is just to hold treatment for the week and let my liver settle down a bit and start-up next week. I couldn’t believe that I would have to miss a whole week of treatment. I even went back to the clinic Wednesday morning just to make sure my LFTs were declining, and they were. My AST had dropped to the 200’s and my ALT had dropped to the 100’s, which is a huge improvement, but still not okay to restart infusions this week.
So on the one hand, It was nice to have a break from treatment, on the other hand, I want to continue beating this shit out of cancer, and I feel like missing 1 WHOLE WEEK of induction therapy will lower my chances of really putting Melanie to sleep forever. My doctors tell me that this isn’t the case, and the fact that my liver is responding like this means that the treatment has “bothered” my immune system, which means it is hopefully attacking the melanoma cancer cells. I hope they aren’t just telling me this to make me feel better, I think I believe them. So I missed all of week 3 of treatment, and we should be starting back-up again on Monday.
As you may have predicted, the other unfortunate result that comes from skipping a week of infusions is that this means this coming Monday and Tuesday will likely be miserable again, because my body has to get re-acquainted with interferon. I am not looking forward to the reunion, but it will be nice to be getting back to my all time favorite job of bitch-slapping Melanie for hours on end.
Weekend/ Brute Squad ultimate update
So last weekend was Regionals. I played! I felt mostly great until the last game each day, when my muscles ran out of glycogen and I became fatigued. Aside from us dropping the ball in our first game against New York, we played great and we won Regionals! This is what was expected of us, but our team hadn’t been performing as well as we normally do, and it felt great to “get our groove back” so to speak.
Teal Squad/Blue Schwam
My team never ceases to amaze me with how fucking supportive they are. They did a hilarious thing this weekend and I will try my best to explain it, but it’s not really going to compare to the actual experience. Anyway, so at 2014 Regionals with Brute Squad, a couple of my teammates, Claudia and Murphy and I, all had matching teal better sweaters, which we wore together and dubbed ourselves the “Teal Squad.”
I have always been a proud member of teal squad, and anyone who knows me and has seen my closet or my apartment knows I adore the color teal. Welp, last year at Regionals it was not as cold out so I didn’t bring my better sweater, but instead brought a light rain jacket, which I thought was also teal. It turns out that this fateful day I discover/remember that I am somewhat color blind, and have poor discrimination of the colors blue/green/purple. Which is great for me because everything looks teal to me, which obviously is my favorite color. Anyway, it turns out the jacket was blue. And nobody would let me in the teal squad picture. And I was DEVASTATED. I ran away as a joke, but really I was upset. I had terrible teal squad FOMO, afterall I started Teal Squad, there was no way they could barr me from the group from a simple color mistake, right? WRONG. From then on, everyone called me Blue Schwam and it was dubbed the worst day of Blue Schwam’s life. Everyone went wild with the meme’s on our groupme.
But THIS YEAR my team surprised me during the first day of Regionals 2016. At first one of our captains, Becky, reminded everyone that it was the Anniversary of the…. 2nd… Worst Day of Blue Schwam’s life (because cancer trumps being blue as the worst day of my life). But then they surprised me with Teal LiveSchwam bracelets. The kicker was though, that everyone on the team got teal bracelets, and in memory of the blue schwam fiasco of 2015, I got a blue bracelet. Later I made Lege wear a blue one in solidarity with me. But it was the most perfect thing my team could have done, and I loved it and I have been wearing my blue bracelet since then. I have extras (both teal and blue) so let me know if you want one too. They don’t say anything on them, but now you know.
At this point there is nothing that is going to stop me from playing in Nationals. I feel like a train where someone cut the breaks and I’m chugging full steam ahead and I’m just gonna play my little heart out (and destroy everyone in my path in the most spirited way possible). As I have said before, playing frisbee with my team is some of the only time I don’t think about cancer and I can simply just do something I love, surrounded by the love and support of my best friends. Ultimate is also how I met Lege, so it’s good for that too. This weekend we have practice and I can’t wait to get better with my team and run around after having a week of no infusions. I actually feel like a caged animal because I bruised the bottom of my foot somehow, so even though I haven’t had treatment this week and I feel great, I’ve had to take it easy because i want my foot to heal before practice/nationals as well as let my liver calm down. I am happy to say, my foot feels better today and I’ll be practicing this weekend.
School started this week and I am already drowning in assignments and It’s been a while since we’ve had more than 2 classes so I am not sure how I am going to get everything done. However, all my professors know about Melanie now and they have all been super supportive. On another hilarious note, I had to send in my application to take the Nursing Boards (called the NCLEX). We had to attach a passport picture to our application. My first mistake was going to the CVS in central square (AKA Mental Square). Long story short, I had to wait 20 minutes before someone would be willing to take my picture and then I had to pay $13 for the 2 lousy pictures. By the time they took the picture I was so annoyed that they had wasted my time and I was also channeling how I would probably look/feel when I was taking the NCLEX that this picture is what resulted.
The guy kept being like “… Uhhh we can retake it”. But I was like “no it’s fine, I don’t care!” So now I look like a crazy person and this is what they will see when I go to take the NCLEX. Oh well. Also, thanks to school it will be difficult to post long updates at the end of the week so I will probably resort to posting shorter ones during the week. We’ll see.
thanks for reading everyone and as always thank you for the continued support. Love you all.
-Schwambomb, schwam, Lany, Elana