It’s May! How is it the fifth month of the year already?! Time flies quickly when things are going on!
In terms of what has been going on, the Cactus Cancer Society Young Adult Cancer Advocate of the Year award competition ended on April 18th! I ended up being this year’s winner thanks to my generous donors, some people I have known for years, and others I met when they sent in their money! My campaign ended up raising $12,166 out of the over $33,000 that all the nominees raised combined. I would be remiss if I didn’t mention my amazing fellow nominees, who had all kinds of creative campaigns that raised a lot of money. This year, the top four nominees raised over $30,000! I think I speak on behalf of all of the nominees when I say: Thank you, everyone, for your support – monetary or otherwise. We could not have raised this money without you.
Summer is coming soon – what are you going to do this summer? I am going to try to go to the 5th Annual Young Adult Cancer Camp that takes place from September 3-6 at a YMCA camp 45 minutes outside of Pittsburgh. YA Cancer Camp is organized by YASU and Elephants & Tea. Registration opens May 5th, and it fills quickly – there’s only 100 spots! Last year, all the spots were filled in a little over two weeks, so register ASAP if you are interested!
May is a month full of memories for me – a lot of cancer-related ones. May 6th was my first visit to my first managing oncologist – we talked for a while, he did a bunch of tests, and then he did a surprise bone marrow biopsy (it should be illegal for those words to be within five miles of each other, in case you were wondering). Yes, a surprise bone marrow biopsy! We had finished talking, discussing my most likely diagnosis, and then he said he wanted to do a bone marrow biopsy. So, I ask the reasonable question of “Okay, so should I schedule that up front?”
“Nah, just go down the street, get some lunch, I heard the burger place is good, then come back and we’ll do it.”
I, being just a bit of an anxious person, start to freak out. I asked him for anything to help – some Ativan to calm me down, maybe a pain med to help with the pain of having my hip drilled into, and he declined, saying that his bone marrow biopsies “never” hurt.
He was wrong.
Then we had to take the train home. I strongly advise against taking a train 70 minutes home after a bone marrow biopsy. However, it is a good life hack if you don’t want to pay for a ticket! They didn’t ask me for a ticket when I was sweating like a pig and cursing like a sailor at every bump the train took!
May 18th was a very long day. We went back to that oncologist for the results of my bone marrow biopsy. Now going in, we knew that I had cancer – either Chronic T-Cell LGL Leukemia or Chronic NK Cell LGL Leukemia (my blood work showed one, and my first bone marrow biopsy the other). This time, we drove in and took lunch with us – that ended up being a very good thing, since we had a four-hour wait in the waiting room. 3 PM comes, and my name is called; we go back into an exam room. “Maybe the doctor will come now,” we think. Nah, that’d be too easy. The clock strikes 4, and the doctor walks in. What are the first words out of his mouth? “How are you feeling?” Nope! “How did you feel after the bone marrow biopsy?” Naaah.
“So, it’s rarer than we thought!”
Yes, those were literally the first words out of his mouth after he stepped into the room and closed the door. He told my parents and I that I didn’t have one, but I had both subtypes! I laughed, because of course me and my medically odd self get both types of a super rare cancer.
We started talking when he noticed my mom was taking notes. He says she doesn’t need to do that and says to the nurse with him, “Nurse, go get my markers. They’re at the nurse’s station.” He proceeded to grab my mom’s notebook and draw diagrams explaining how my cancer works and possible treatments.
We talked about treatment, and I asked him, “Okay, so it’s once a week, and it’s just like my epilepsy, I take pills to keep it under control?” and he told me, “Yeah. Exactly.”
It isn’t. Chronic cancer isn’t like that. I’ve told you guys about how my treatment has been in the past and how I am currently on my fourth line of treatment. I have a chronic cancer; there is no true end of treatment for me; if I get a break from medication, it’s just an invisible clock counting down to when I have to start up treatment again. Luckily…this trial drug is working, and I have been on it since August 2021. Every 12 hours, $1000 goes down the hatch. Thankfully, the medication is free, courtesy of the drug company running the clinical trial.
I live my life visit to visit, blood draw to blood draw – on the times I don’t see an oncologist, I sit by my phone waiting for the trial nurse to call and tell me what my counts are. Is my hemoglobin stable? Are my neutrophils still good? If they’re all good, we close the call with when I will talk to them next. For my local oncologist, that’s 8 weeks. For the trial team, that’s every 28 days. So I live my life in 28-day chunks.
However, those of us with chronic cancer need to try to pepper things in between those visits. We need to fill our time with things that aren’t the “I wonder how my next visit is going to be?” and “the nurse hasn’t called yet with my results, and the call was scheduled for 30 minutes ago, what’s wrong with my blood????” thoughts. Come up with things you want to do! The summer’s approaching! The time of hot weather, air conditioning, and cool drinks!
Make a list – what are your long-term and short-term goals, things you want to do? It could be as simple as “visit as a friend” or as complex as “travel” (Cancer Camp? A First Descents trip? Something else?) – the sky’s the limit! Think of one for each and go from there – you don’t need to come up with anything huge, you might just want to hang out on Zoom with your friends and do some crafts as a long-term goal, or maybe you want to read that book that has been on your To Be Read list for a year now? Find something to do this summer, big or small – once you cross it off your list, you’ll let the dopamine flow and get that nice, happy feeling.
