Sorry, I know I said I’d update on Tuesday after my surgical follow-up but the harsh realities of being in an accelerated nursing program compounded by ignoring this reality and running away to Colorado with my best friends for a weekend (to play in 90 degree heat for 8+hrs/day) caught up to me. But now, after finishing all my imminent assignments for the day and sleeping for a whopping 9 hrs and 48 minutes last night (the most I’ve slept probably for the last 3 months), I am ready and able to give you guys this weeks rundown.
Note: If you only have time for a quick update – the Timeline page has been updated. If you want the more detailed and humorous update, continue reading…
Surgery Update: As I had hoped, Dr. Cusack took out my stitches on Tuesday! He knew that I played over the weekend simply based on the number of bruises on my limbs. He was very impressed. In my old age, my skin seems to be mildly allergic to everything and my nylon stitches were no exception. I started taking some oral antihistamine pills, which helped a bit (not allowed to put on any steroid creams) but there were still times of unbearable itchiness. Dr. Cusak (and other medical friends) thought my skin was actually reacting to the stitches themselves in addition to the normal histamine response from my skin healing. Needless to say, I was very excited to have my stitches removed, however he did place 12 steri-strips in their place, which seem to be a minor improvement in itchiness.
However, I am bummed because I won’t be able to swim in the ocean this weekend on the cape. The steri-strips will be in place for 7-10 days or less, thanks to my active lifestyle (muahah) and then I can swim as much as I want. Also noteworthy, my parents haven’t missed any of my appointments yet. Even when I remind them that I am 29.5 years old and can probably handle a follow-up appointment on my own, they insist on showing up and being super supportive and buying me “anything I want” in the hospital cafeterias. This is huge, you guys. Sarcasm aside, I have never been more grateful to have my parents close by. They have been amazing and a huge support for me.
The other good news (though not unexpected) is that the results of the pathology reports from the surgery showed no residual cancer cells in either the area on my back and under my arm! You could say there is no evidence of disease left in my body. However, thanks to the aggression of Melanie and other bitches like her (melanoma as a cancer in general), there is a very high probability that there are undetectable microscopic cancer cells still hiding in my body and if given the opportunity, will likely rear their ugly head again. This is why I will be starting systemic immunotherapy treatment in about 3 weeks. The hope is that the immunotherapy treatment improves my prognosis so that I remain disease free for a longer period of time, with the extended hope of indefinitely. To read more about my treatment options see my First Post.
Thank you to everyone who forwarded me the NYT articles on Immunotherapy. I highly recommend reading them if you are interested in learning more about it. They are super easy to read, even if you have no science background. Here they are:
Harnessing the Immune System to Fight Cancer
What is Immunotherapy?
After seeing Dr. Cusack, we were able to check-in with my oncologist, Dr. Lawrence and research nurses regarding the clinical trial. I passed all the preliminary screening and am waiting for my tissue samples to be accepted by the lab in California. It looks like now I will be starting the clinical trial on August 29th. This will be after I spend a week relaxing and enjoying much needed family time on the Cape and will be during my 3 week break between the summer and fall semesters at school. Hopefully I will find out which treatment arm I am randomly assigned to the week before, but it could be as few as 2 days before I start treatment. Waiting to find out the treatment arm has been the most difficult part for me due to wildly different administration regiments / expected toleration of each of the possible treatments. If I get randomized to interferon, then I will likely feel like I have the flu for a month or more and will probably not be able to participate in Nationals. If I get randomized to pebroluzimab (keytruda) then I will only have infusions once every 3 weeks, and will probably have minimal side effects, though there is a possibility of some more serious effects. For more info on this see my First Post and/or my Timeline
Weekend/Ultimate Update: Apologies to everyone who tried to follow Brute Squad on twitter this past weekend only to find that we actually only live-tweeted 2 of 6 games.
Spoiler alert, we played mostly well but lost in the finals to Seattle Riot. I got to play the normal amount and even had a layout D without any issues or significant pain from my incisions! Huuuuuuge shout out to my TEAMmate (who will not be named for identity protecting purposes) for “borrowing” some tagederm and extra gauze from her current placement and patching me up each morning at 5:30AM so that I could go and schwamm anyone in my path. This only happened one time on a failed poach D attempt where nobody was injured thought I did hear someone mumble from the sideline “schwam stop trying to kill yourself.”I have no ragrets. Not even one letter. Also a big thanks to Kim and Molly and anyone else who had the pleasure of helping bind and re-bind me throughout the weekend. The Colorado air made it hard to breath with the binding so eventually I ditched it and still everything was fine. I also want to send a special shout out to my TEAMmates who did the sweetest, most perfect thing for me. If anyone has seen Mean Girls (the movie) than you’ll love this and if you haven’t seen it, then you’re dead to me. They made me a “burn book” of Melanie. Pretty much on each page they write stuff or draw pictures making fun of Melanie and encouraging me to beat her. I don’t have pictures now because the TEAM is still filling it out, but it’s amazing and almost brought me to tears. Afterwards I made everyone hug me, which resulted in a hilarious picture that looks like it came straight from the outtakes of “Jesus Camp.” Side note, there are like 10 jews on the TEAM, which makes it even better.
This weekend marks the extremely rare occasion where Brute Squad doesn’t have practice, so I will be going to the cape for the first time this summer with Lege and his parents, who will be meeting my parents for the first time! Exciting! Then next week * Shameless team promotion alert * Brute Squad will be taking on the All-Star Tour at home! Yes, a rare occasion to see us play locally. For more information, see the event page – Brute Squad vs All-Stars on Weds 8/10 at 7pm in Malden.
But how are you really feeling?
I get this question a lot. Especially from teachers and health professionals. To provide some context, I have been continuing my life as I would normally, playing as much as possible with my team Brute Squad and attending clinical and class for graduate school. Honestly, I am totally fine 95% of the time. Lege and I have been making the best of this bitch and have never been happier together. However on occasion, like maybe once every 1.5 weeks something small won’t go my way and I’ll completely break down for a few seconds or minutes. Most of the time it won’t make sense. Like I go to make some toast and we are out of peanut-butter and then all of a sudden tears well up in my eyes. Like “how could we be out of peanut butter right now, I have cancer.” Okay, that’s extreme and it only happened once the week after my diagnosis. I just find myself a little bit more emotionally vulnerable than before. The good news is, I am generally a really positive person, and small stupid things like this rarely get to me. Sometimes I don’t even mind my little break-downs because it reminds me that it’s okay to be upset about cancer. While I know that I am just at the beginning of my journey and the toughest part is yet to come, I know I’m going to be fine and I truly believe Melanie is going to get her ass handed to her, in part thanks to all the support I’ve received from all of you.
Thanks again for everything. It means more than you all truly know. I’ll be sending some shorter updates in the weeks to come before I find out which drug I am randomized to so stay tuned!
Much Love & Fuck Cancer,
Schwambomb, schwamy, Lani, Elana.
Recent updates have been made to the Timeline and the Lessons & Tips pages. Also, If you don’t check facebook frequently and want to stay updated, I added a widget on the sidebar of the homepage that allows you to subscribe to the blog either via wordpress notifications or email updates. Whatever floats your boat or finds your lost remote (or not) is fine with me. No pressure whatsoever to sign up, I will not be offended. You just might not get picked to be my buddy when I get to spend a day covered in glitter with T-Swift and T-pain for my make a wish foundation… wish. So, yeah, do what feels right for you.