Tomorrow marks six months of treatment on my oral chemotherapy, Nexavar.
I wish I had better news about the results.
I had an MRI last Thursday. It took three nurses four attempts to get an IV in my wrist for my contrast line. As I was rolled into the machine with headphones over my ears blasting Disney music and instructions to “breathe in, “hold,” and “breathe out,” I could feel my heart pounding and my toes curling. Perhaps you’ve heard the term “scanxiety”? This was it, for sure.
My oncologist was due to call me the next day with results. I left a message in the morning reminding them that I would be waiting for a call. By 4:30, knowing it was a Friday in August, I called again. Perhaps I was walking the line between persistent and annoying, but I was on edge. I had already cleaned every surface in my apartment and run through a good deal of my Netflix list by 3.
When the nurse practitioner called back, it was the news I didn’t want to hear. My tumor has grown. Not significantly, but it’s grown. I would later find out when reading the report they uploaded that it’s now in the periosteum, or tissue covering, surrounding my top two ribs. Surprisingly, they still call this type of tumor growth stable.
Let’s just say I was less than thrilled.
Throwing Yourself a Pity Party
I think pity parties get a bad wrap. When you get a diagnosis like mine, people will often tell you to keep a positive attitude. I get that. I agree. I really try to live it. But it’s impossible to do 100% of the time. You can keep a positive attitude all you want, but you’ve also got to feel what you need to feel without letting it destroy you as you deny it’s there.
When hosting a pity party, as with all parties, you’ll need to carefully consider many factors. Please, allow me to be your guide.
Make sure you’re in a location where you can be yourself. Your yard, pool, bedroom closet, or bathtub are all great choices. Pity Parties in public places should be avoided at all costs. We’ve all seen these so I don’t need to tell you what a disaster they are.
I often prefer my own home, so I can wear my pajamas.
The Start and End Time
This is arguably the most important factor in hosting a Pity Party. You need to put a firm start and end time on the event. If you do not, your risk walking through the rest of your day, week, or life making other people miserable. The goal is the catharsis, or the release of emotion, NOT to bring the rest of the world down with you.
When the party is over, you must clean up as though it were a soiree for a dozen friends and move on. If any further clean up is needed, you can reach for Netflix, some art supplies, a meditation app, or my preferred method: call a friend who may be experiencing a tough time of their own. Nothing takes you out of your own head more than being fully emotionally present for another person.
My pity party was in stages. My goal was to get it under control before going back to school on Monday. It went on longer than usual, but it was honestly my first in six months – and well overdue.
The Guest List
This is critical: pity parties are best-attended solo, or with one or two wisely selected guests. You must inform your guest(s) of the occasion, receive their agreement to the requirements, or go it alone. Make sure these are your tried and true, seen-you-in-worse-situations friends who have fantastic empathy or who would bail you out of jail. Their main responsibility will be to listen, though they may also need to offer you a tissue or an adult beverage.
In this digital age, do not hesitate to phone or text your guests instead of hosting in person if your guests were gracious to agree to your previously discussed terms. A phone call also gives your rockstar friends a great excuse to cut out if need be. Pets also make excellent party guests, due to the fact that they exemplify unconditional love… and can’t respond when you talk to them.
My mom came over, and she was a rockstar about listening as I yelled, cried, and changed the subject every 5 minutes. Daisy was, as always, an excellent sport. I saw a friend Saturday night and a few more on Sunday. All listened extremely well and graciously let me whine.
Let it out. Talk about your feelings. Rage if you have to. If you’re going this solo, journaling or doing something physical like deep cleaning a bathtub can be helpful. (Bonus: clean bathtub!) Put on that Coldplay track and cry if you want.
If you’re going to eat or drink, decide what it will be ahead of time- so you don’t find yourself looking at the bottom of a Ben and Jerry’s container after 15 minutes. If you’re needing an adult beverage, stop before you think you should.
Friday, I had some leftover soup, which had ginger in it- perfect for the stomachache I developed waiting for the news. I watched a crafting reality show. Saturday, I watched my favorite: true crime documentaries. Sunday, I went for a walk.
Send a Thank You Card
Thank yourself (and when applicable, your guests) for taking the time to attend to your emotional needs. Remind yourself you are only human, and once your pulse slows a bit, notice what a gift it is to be alive.
Thank you to those of you who helped me get through the last week. You are rockstars.
So, What’s Next?
I met with my oncologist on Tuesday. He agreed with my treatment philosophy, and he didn’t want to settle for “stability” of this tumor either. We discussed our treatment options to hopefully shrink it, and ultimately we decided to try the plan I proposed: to increase my dose back up to 400 mg/day and scan in three months. After my scan results come back at the end of November, one of two things will happen: either I’ll stay on my medication if the tumor’s shrinking, or it will be time for more aggressive care. We talked about some of those more aggressive options. I’m relieved I don’t have to rush into them tomorrow, but I also feel prepared in knowing they may be down the line. I have to say, since everything else is largely unpredictable, it felt really good to be a partner in determining my own care.
Truth be told, I’m more optimistic now than I was even a few months ago. Meeting with my oncologist for the first time since May reminded me that I’ve got an awesome care team who is ready to help me fight, whatever the terms may be. Aside from that, the people who listened to my ranting over the weekend are proven champions who I know are here through the good, bad, and ugly. Both of those things are ultimately more important than the millimeters and centimeters my tumor has grown.
Living with a rare diagnosis is a constant battle. There are challenges at every turn and it’s exhausting. But I am here to fight. With an incredible backing of support, a care team I feel confident entrusting, and a determination to not lose who I am in the chaos, I’m armored up to win.