I Don't Want To Talk About It

But of course I'm going to.

The day of my most recent infusion was the day after Christmas. All of the joy of the holidays got stuffed into a plastic tub next to a stocking with a snowman on it, and my team had to take a chisel to my slowly breaking heart.

I met with my mom and Dr. Wilson from Palliative Care to talk about the answer to this fun question (and I’m paraphrasing here):

“Exactly how far gone do you want to be before we pull the plug?”

It’s a terrible, terrible question. No fun to ask. No fun to answer. No fun to still be dwelling on two weeks later.

But then again, it’s a terrible question for my family not to know the answers to, and that’s much worse. Some day, I’ll be rolling through heaven’s gates, six guilt-free donuts in one hand (because you can hold as many donuts as you want in heaven), and a pain-free frozen mudslide in the the other, while my family mourns down here and stresses over whether they did what I would have wanted with my broken body. That’s not fair. They should be spending their time framing favorite pictures of me and writing odes and/or sonnets.

Which is preferable? Odes or sonnets? Next week, I’m going to write about some limericks that I’ve been enjoying, but I digress.

The beauty in the conversation I had with the kind and brilliant Dr. Wilson and my mom was how openly I was able to talk about what I believe and what I believe I want. No interruptions except for clarification, and no judgements. Dr. Wilson would repeat back to me what he thought I was saying, while writing it down and making sure that my mom was comfortable with my wishes.

I so appreciated when Dr. Wilson would precede a question with “I’ve been trying to come up with the best way to ask this,” because it showed his sensitivity to the power of words and the weight of the topic we were discussing. Personally, I feel that he worded every question with as much empathy and grace as is possible. He thanked me for taking the time to face these issues now, in this time of relative good health because it is so deeply sad to address them when death is imminent.

Now for your takeaway: I’m not the only one who should be tackling this project. We all should. You should. Some of us are going to die sooner than we want to, and some of you won’t be as “lucky” as I am to be getting notice about a probable extra-short life. Do your people know what you want, or will they be left to agonize over the questions while you lie in a hospital bed, waiting?

I’m not going to write about my answers to the questions (although if you want to talk about them with me, I’m happy to do so) because they are just so deeply personal, and my right answers aren’t necessarily right for you or your loved ones. But I can tell you that I’m definitely right that you should know each others answers so that you can take care of each other in the most respectful, loving manner possible during the hardest moments of your relationships with each other.

It’s terrible, but it’s wonderful because it’s a tremendous expression of love and trust.

That’s why, even though as I said at the top, I don’t want to talk about it, I will again in a couple of weeks. My brother is my backup decision-maker, so he and I will sit down and have this conversation together when I go visit him at the end of the month. I’ll tell him because I love him and I’ll ask him because I know he loves me.

And then maybe I’ll write a sonnet about it.

Thank you so much for reading. If you feel inclined to support this blog financially, please click over to my Patreonpage for a safe way to donate. Another way to support the conversation is to share on social media. But truly, I’m just really happy that you are here!

Oh, My Word

Happy New Year, New Decade, New Month, New Day!

As I reflect on the potential words that I could choose for 2020, it’a little overwhelming. There are a lot of words out there! But the word that I’ve been sitting with for the last week or two hasn’t gone away. It seems that my word has chosen itself, and who am I to argue?

So for this new year, my focus and intention will be on the word, STRENGTH.

My reason are several, which is great, because I love nothing more than a bulleted list:

  • My cancer is requiring aggressive treatment every three weeks. It’s terrible for the first week and pretty ok for the second and third. It might get worse. It probably won’t get better. I need to dig deep, power through, and keep going. Even in times when I’m feeling incredibly weak, I will find strength.

  • As I subject myself to the onslaught of poison that will make cold water intolerable, require me to wear mittens when I reach into the fridge, and slowly deplete my sense of touch. I feel the need to arm my body with increased muscle tone, stamina, and centeredness. My coach, Erin Kershaw is my sherpa on this journey to physical strength.

  • Things get hard for my kids. Still, though, their characters and senses of humor fortify me every day. Things are going to change with us this year, as Max makes the decisions that will take him farther away from us after graduation. We will have to learn new ways to be together. We’ll ask for help from each other and cheer each other on, even when we’re feeling pretty sad. My hope is that our family can look to each other for a current of strength that travels in every direction.

  • I don’t want to give up on my 2019 word, LIVING. I want to keep doing that in every way I’m able and called to. Sometimes, I am compelled to offer, rather than muster, strength — the power to be there for others in their hour of weakness or need. Even at my most helpless, I hope always to be able to offer even the tiniest bit of strength back to this community that offers me so much.

  • It’s going to be a pretty big year politically. Have you heard that there are a couple of important elections? It’s not easy to discern what choices are the right ones personally and for the country. Some people get downright ugly as they work it out for themselves and seek to impart their “wisdom” on others. Ideals and beliefs can waver when they are constantly under attack. It’s not easy to maintain strength of convictions in the face of such ugliness, but maybe I can if I spend some extra time with my word this year.

I’m going to write my word a lot. Probably here in this blog, and definitely in my calendar and notebook. It will be on my next My Intent bracelet and hopefully on a necklace from the delightfully talented Divella Designs.

If I surround myself with strength, I hope to seep it up through every pore.

2020 is here. What’s your word as you face what’s in store?

Thank you so much for reading. If you feel inclined to support this blog financially, please click over to my Patreon page for a safe way to donate. Another way to support the conversation is to share on social media. But truly, I’m just really happy that you are here!

Primary Caregiver

It’s such a clinical-sounding term, “primary caregiver”. Accurate, yes, but cold. I prefer her other title: Mom.

With Sunday being a milestone birthday, I thought I’d tell you more about her.

She’s been present in a lot of my posts, but I’ve never dedicated one to her. Not because she doesn’t deserve the words, but because my words will never be as good as what she deserves.

When you become a mom, you sign up for 24/7 care of another human being for approximately 16 years. Then your shifts get shorter, but your worrying multiplies. Then, before you can say, “child, you will never know the volume of my love for you,” your child is an adult. As you watch them deal with challenges — education, jobs, relationships, and more — you just can’t believe the miracle that this little piece of you has become. If you’re lucky, they keep you on as an advisor, but the brunt of your work is done.

My mom moved into the role of Grammy a few years after graduating from full-time mom, and she killed it. My kids grew up spending nights with my mom and dad, traveling, camping, and learning what unconditional love looks like. They ate more ice cream than they were supposed to, and they cannot function on Christmas Day unless they’ve had at least three of her cinnamon rolls. They found out that there was no peewee, JH, JV, or Varsity football game too far for their grandparents to travel to.

The boys are big now. In every sense of the word. Grammy’s job is winding down. But just as they began to achieve adolescent status, my phone rang, and Grammy got called back into full-time Mom duty.

Luella, your daughter has Stage IV Colorectal Cancer. She’s got a lot of great friends, but she lives alone and is gonna need someone to wait on her hand and foot sometimes, maintain her house, get her kids places with very little notice (because even when they get big, they still don’t plan much beyond what they’re doing right now). She’s going to react badly to the first couple of infusions, so she’s going to need someone to talk to the doctor on call and to drive her up to the hospital when it becomes clear that she really needs to be seen. How are you at driving fast, but not too fast? How are you at not talking when your soul just needs to converse with your child because hearing her voice is the only comfort you can find in those scary moments?

I’ll answer. She’s better at it than anyone I’ve ever known and better at it than I could ever be.

She knows God’s got this, even if I’m not as sure. She wakes up at the time she needs to wake up to get me to the place I need to be at the time I need to be there. She gets me breakfast, touches the cold things I can’t touch, makes breakfast for me and my pets, gets our groceries, and cleans my house like I never did, even before I got cancer. She and Dad “pop down” to Pennsylvania to get her lymphoma treated, then come back up to spend the holidays with us.

Because who else would make those cinnamon rolls?

She’s an incredible person who I’m blessed to call my mom, lucky to call my friend, and, well, stuck with calling my “primary caregiver”.

Thanks, Luella, and Happy 70th Birthday. I love you.

Words: How's It Going?

If you're a regular reader, you know that, rather than making a list of resolutions, I chose a word to guide me through this year. I encouraged you to do the same, and was thrilled that some of you did the same. As 2019 comes to a close, I thought I'd check in. 

Did you choose a word? What was it? Did it play a part in your year, either in the decisions you made or the things you did?

Have you started thinking about next year's word yet? Or is that kind of long-term obsessing over things unique to my brain?

My 2019 word is "living". And I feel confident in saying that I have achieved a year of LIVING. You don't want to sit here and read a list of the things I've done this year (although you can read about pretty much all of them if you scroll through my HereCast blog!), but I am happy to say, that, in spite of what they call a "terminal illness", I am, in fact, STILL LIVING.

I do think about not-living (also known as dying) a lot. Maybe more than I should. But there have been some pretty miserable moments in the last couple of weeks where things just feel like they've gone off the rails. It feels like I'm standing in an Oz-style tornado and there is nothing to hold onto. I'm the cow that flies by Dorothy's window.

But then I go places where I'm known, and my people throw me a rope.

Ruth comes over to vacuum and brings her 20-year-old son, who I taught in confirmation class forever ago, and who happily cleans out my (pretty gross) microwave. Her husband puts WD40 on my car doors when they are frozen open. Joe P, usually my chauffeur for chemo days, answers my call and drives me to church because my car doors are frozen open. Kathy, Donna, and Kier take turns doing my dishes. Lisa folds my laundry and makes my bed. Kathy comes over to take my temperature on a day when I feel particularly terrible (and runs down to Rite Aid to buy me a new thermometer when we discover that mine is dead). As I'm sitting in Joe's truck, reflecting with him on the sermon we just heard, we watch as Bob drives up to my house to pick up the wreath that he ordered from the Project Grad fundraiser, but, finding that my walk is snowy, pulls a shovel out of the back of his truck and shovels his way to my porch. Marv meets me at Boston Dreams and, while Karen makes my chai and refuses to let me pay for it, tells me to write about it . Sometimes, that writing takes the form of texts to the Three Teachers, and they always respond with the perfect blend of compassion, sarcasm, and diversion.

I've been waiting for just the right post for this perfect picture of Marv.

When I send out the bat-signal, Nikki, Laura, and Kat, or Jen and Heather, or Lisa meet me at The Station to toast with me: HERE'S TO LIVING (I'm so happy that I still am, and I couldn't do it without you all.)

Putting On My Dressy Sweats

They switched me over to a more aggressive chemo a few weeks ago. It is pretty terrible for the first week. It causes an acute sensitivity to cold. Anything that touches my skin, mouth, or throat that is colder than about 70 degrees hurts. I get dehydrated easily because drinking 70-degree water is gross and tea gives me heartburn. When my salivary glands or tear ducts release, it sends a shooting pain through my head for about 30 seconds. So crying and beginning a meal are both very painful activities. Imagine being terminally ill the year your son is set to graduate high school and trying to not cry. It’s like a big mean cosmic joke.

Three weeks ago, I started to develop skin lesions that have baffled two oncologists and three dermatologists as well as my Palliative Care doc. No one wants to be a medical mystery. Remember when I was complaining about every day being the same? I kind of miss that monotony now that I’m such a puzzle.

My hair is ridiculous. Since I shaved it last February, it’s grown ¼ to 1 inch, depending on where on my head you’re measuring. I don’t mind how messy the top is… some even consider it stylish, kind of. But the sides are ridiculous. I’d almost rather be bald than have the swirly, fuzzy mess that is there right now! 

Because of the lesions, I haven’t been able to wear normal clothes because those areas are just too sensitive. So sweats and leggings are my new uniform. I had the honor of attending the letter of intent signing event for a young woman in Max’s class who will be playing D1 college basketball next year. What an exciting moment for her family and for our community. I had to choose between going in my sweats with my chemo pump hanging on my shoulder or staying on the couch and waiting for the pictures to be posted on Facebook. Because of my chronic FOMO, I went. I looked terrible, but I was so glad I was there for it… and not just because their cousin makes amazing cookies.

One important lesson I’ve learned through all of this is that dignity is sometimes a choice. Once you’ve been poked, prodded, had your rectal muscles checked for responsiveness, shown the lesions on your breast to a room full of doctors, and had your hairstyle decided upon by deadly/lifesaving chemicals, it’s easy to lose the feeling of having it all together. But in my case, I can choose to hang on to it.

Yep. I’ve been forced into a situation that regularly tries to snatch my dignity, but I haven’t let it go. I’ve chosen to be proud of my fight; my strong body; the mittens I need to wear in the refrigerated section of the grocery store: my highly responsive rectal muscles. Even if it means wearing my nicest sweats to parties, I’m going to go with my (hat-covered) head held high.

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