Month: August 2018

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.

The Location

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.

The Activities

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.

Last week, the world lost two remarkable women. Both impacted me greatly: one was a colleague and friend, the other, I never met. Grieving is hard. Being as I write to help myself process, I hope you’ll indulge me in reading my processing. I’ll try to honor these women with my words.

Stacy

My friend Stacy was my “room buddy” this past year at school. I needed a spot for my desk, and the first grade classrooms had a corner for me to tuck into. I had admired Stacy since I began working with her. She was effortlessly put together. It was not only her stylish and classic wardrobe (though she certainly had wonderful style), but also the fact that she was the embodiment of grace under pressure. It was a common running joke: when we, her co-workers, weren’t sure what to do in a given situation, we would all look to Stacy. That school year, Stacy and I grew closer, sharing stories over our morning coffee and emails, covering for one another when we needed to duck out of the room, and exchanging silent glances when one of our students said something hilarious.

This winter Stacy distinguished herself as one of those special friends to make a true impact on my life. A breast cancer survivor herself, she walked with me through those scary early days, when I was told to get more scans and tests and when a diagnosis was still on its way. Her text to me the night after my biopsy brought me so much comfort. “Thinking about you Christina and wishing you to have a peaceful sleep tonight. Then some answers soon and moving on the road to recovery!” She sent me another when I announced my diagnosis to my colleagues, telling me how brave I was to tell everyone.

Writing about her in the past tense is hard. It’s unfair.

I once heard someone describe grief as “love with no where to go.” I loved being Stacy’s friend and I loved her for her selflessness in offering support when I needed it most. Now, what am I to do with that love? It makes such little sense to me that my friend is gone. I think about the students she had yet to teach, the husband she loved so dearly, and the son they had only begun to raise. The only logical answer I have in response is to share that love she so freely gave, that love that’s stuck right now as grief.

I hope to someday be someone’s Stacy. I want to be there for all folks that need it, but especially other patients. I will to reach out to that person and remind her how brave she is, even when it’s not yet apparent to her or when she doesn’t feel it. I’m ready to cheer her successes with emojis in text messages and be there for the moments when she feels less than herself. I will pour hope into her when she has nothing left to run on. If I’m lucky, I’ll be half the friend Stacy was to me.

The reading at Stacy’s service included the line, “At night, her lamp is undimmed.” Her light is still shining, bright as ever. It’s just my job now to reflect it.

Shirley

The day Stacy passed, I received an email around lunchtime entitled “A grandma grateful for your gratitude.” It was written by a 95-year-old woman, Shirley, with the assistance of her aid.

Shirley found my old blog, Project Thankful Heart, as well as other gratitude blogs, and wanted to correspond with the writers. She tried to send me an email before, but it bounced back, given that I had de-activated the account a while ago. She was persistent and wanted to make sure the email found me, so her aide suggested various combinations until they found the proper account. Lo and behold, it worked.

Shirley’s shared, “I’m aiming to be more grateful for my life so I’ve been doing my researching for gratitude to feel inspired by others and I came across all of your wonderful ‘blogs’ (as I’m told they’re called). My oh my, what each of you have managed to do as young women astounds me, and how each of have managed to write, oh my heart… Thank you for filling this great grandma’s heart with so much wonder and love.”

And this was just a third of the email.

Naturally, I was in tears by the end and had to respond. I told Shirley how grateful I was for her email and how touched I was by her words. I shared with her the miracle of the email finding me, told her about my new blog, and let her know that I was, in fact, grateful for her.

She responded, “I’m sure your life has changed in a way that you never thought possible- but fear not!  I saw you are a theatre person as well (you can always trust a theatre person from my experiences, you can trust me on that 🙂 ) and if there’s any musical that will get you through this I believe it would be my favorite of all time- “The Sound of Music”.  I see a lot of Maria von Trapp in you and as she herself’d say, “I have confidence”.  I have all the confidence in the world in you, dearest Christina. The deepest of blessings and prayers, Shirley”.

I meant to reply to her and let her know how I played Maria once, that it was my first leading role and how I imagine that, were we the same age in the same class at school, we’d get in trouble with the teacher for talking too much. But the week, with its sadness and its events, got away from me until three days later, when I received an email from her aide letting me know Shirley had passed. The aide signed off, “I don’t know much but if Shirley taught me anything its to not let another moment go by without telling someone how I think and feel. Thank you and her for giving Shirley a great last few days- I know she was so grateful.”

Last week was filled with tears. Reading this email was no exception.

Shirley asked that donations to a local theatre company be made in lieu of flowers. I made sure to follow her careful instructions. I’ve been reminding people that I love them more frequently.

And I think she’d be tickled to see her own words on a real-life blog.

Legacy

We are not guaranteed an amount of time on Earth – but we are challenged to do great things with the time we are given.

Shirley had nearly a century with which to make an impact, and make an impact she did, even up until her final days when she was writing emails to the bloggers she admired. Stacy was here for too short a time, but built a legacy of joy, of gentleness, of compassion, and love.

A colleague at Stacy’s memorial shared many beautiful words. I don’t remember them verbatim, but the sentiment is this: That feeling that we all felt, there in the room together, was love. She challenged us to allow it to transform us.

This past year has shown me how challenges can shape a person’s life in the blink of an eye. Last week was one of the hardest I’ve had in a long, long time. If you’re feeling a bit battered, you’re in good company, friend.

Join me.

Let’s sit with our grief, our challenges, our fear. Let’s make space for one another to cry until it feels ok to laugh again.

You don’t need to have cancer or to know someone who does to be in a hard place. As Anne Frank put it, “How wonderful it is that nobody need wait a single moment before starting to improve the world.”

Let’s keep telling the people around us how we feel about them. Let’s be there for one another when it’s most needed. Let’s see how this love transforms us.