The Truth

Y’all know I live in Texas, and when a girl lives in Texas, she listens to country music. Which is awesome (many of you are grimacing right now, but I’m ignoring you because you clearly don’t know better).

One of my favorite songs is “The Truth” by Jason Aldean, about a man wanting to hide what hurts. He lists all the things he wants people to believe about him—none of which are true—because the truth is embarrassing/painful/makes him feel vulnerable. Yes, it’s a break-up song (aren’t all the good ones?), and his truth is that he still loves the woman who left him.

I’ve been thinking about Jason Aldean and his song this past week as people have been calling and texting, asking how I’m doing. With every inquiry, my first inclination is to proclaim “I’m fine!” as cheerily as possible. Which is true, on a basic level. I am fine. I am warm and fed and comfortable in my home with my family. I’m fine.

But the embarrassing/painful/vulnerable truth is that I feel lousy.

I can really feel the drugs from the second infusion working, which means I can feel my body attacking itself. Basically, everything hurts and all food grosses me out (yes, even Diet Coke). Every night, I take a mountain of pills for the worst of the side effects (I’ll spare you those details), but I’m still left feeling nauseous and so, so tired. Like, bone tired. Can’t-get-off-the-couch tired. Two-or-three-naps-a-day-and-still-exhausted-by-nine-PM tired. I can only describe it as this: every time I move, it feels like my muscles are sliding off my bones.

I have zero appetite, and my mouth is so dry, all food turns to paste before I can swallow. But if I don’t eat, I feel worse, so I force down broth-based soups and if I’m lucky, oatmeal. Plus, I am puffy. This is especially evident around my eyes, which are swollen into slits, and for some reason I can’t see well either—everything is blurry. The lymph nodes in my neck are huge and rock hard, which the doctor told me is a reaction to the drugs. 

I freaking look like Jabba the Hutt.

 (And you thought I was kidding.)

It’s ugly, but it’s the Truth. And like Jason Aldean, I try to hide it.

This past week, Brad and I took Pepper to the temple for the first time. Pepper has been looking forward to this for months, and we’ve been looking forward to it since he was born, so there was no way I was going to skip out on it, no matter how I felt. I chose my most comfortable skirt and the softest shirt I own, curled my hair all up to hopefully draw attention away from my squishy face and brushed make-up on my puffy eyelids.

We arrived at the Dallas temple a few minutes early so we could stop at the distribution center to get the things Pepper would need, and even after the hour drive, I was thrilled to see a chair in the little store. I gratefully sank into it, then barked suggestions at Brad and Pepper as they talked to the lady at the counter.

About half-way through, I stopped and thought, “Ah jeez, this looks really great. What must this Beehive Distribution lady think of the squinty-eyed, sour-faced mother calling orders to her husband and son from across the room?” She probably wanted to slap me a little and tell me to get off my butt and come help. Or to just shut-up if I couldn’t be bothered to leave the comfort of the only chair in the room.

Of course, she didn’t say or do any of these things. Temple people are probably the least judgy people in the whole world, but I bet she at least wondered what my problem was and why I was being so bratty. I tried to fix it when we left by thanking her and offering her my best attempt at a smile, but my face didn’t really work, so I think it was more of a wince.

I felt bad for the way I came across, but looking back, I can honestly say I did my best. The truth was, I felt terrible, and it was all I could do to get through the session with Pepper. My sagging face and dropping eyes had nothing to do with the joy I felt as I watched my son make the covenants he’s prepared for and anticipated for months. My simple, earnest son, for whom everything is so hard, made good on his lifelong desire to go through the temple—it doesn’t get any better than that. My heart was truly full.

Although, no one would know by looking at me. I probably looked like I was attending his funeral.

I’ve been reflecting on this quite a bit over the last few days. If there’s one thing I’ve learned in my forty-eight years, it’s that everyone has something hard. I’ve watched friends deal with a child’s health problems, or a spouse who betrays them, or a loved one whose poor choices make them frantic with worry. I’ve seen good women who have no business being single battle life alone, oftentimes with children. I’ve seen someone quietly order the smallest salad on the menu because it was all she could afford on a much-needed girls’ night out, and I’ve watched a worried mother’s face fall as another woman bragged about her high-achieving child. Everyone has a Truth.

And almost none of them are obvious.

Now, I know this isn't earth-shattering news. Native Americans have been telling us for years not to judge a man until you've walked a mile in his moccasins, and the Golden Rule is golden for a reason. Maybe I'm just feeling sorry for myself (←this is surely the case), but I'm feeling a need to be real and to be better. We are all connected in this tangle of humanity, and everyone's Truths matter.

If I’ve ever trampled your Truth, I’m sorry. I’m dumb, and often oblivious, but I’m not inherently mean—at least, I don’t think so. Yet I know I could be nicer. In college, I took a religion class from George Durrant, and he used to say the gospel of Jesus Christ could be summed up in two words: Be Nice.

So, that is my goal for 2018—to simply Be Nice, even in my thoughts. Because all of us are doing the best we can, and all of us have hard things.

All of us have Truths.

Beat the Bear

Look at what my sweet daughter had made:

In case you can't read it, it says #BeattheBear. Jess had enough made for everyone in our family to wear and remember and hope and attack. She says black is the color of melanoma awareness (which I didn't know), so this is our new show of solidarity.

Just look at our warrior selves (except Joey). Melanoma doesn't stand a chance!

All I want for Christmas...

Second infusion: done.

In some ways, this was harder than the first. Last time, with all the drama getting it scheduled, I was just happy it was happening. It didn’t hit me until we arrived that This. Was. Serious. I never quite got used to the fact that I was sitting in that chair, hooked up to medicine that made all the other patients look so sad and sick. It was all new, and I was equal parts curious and overwhelmed.

This time, however, I knew what to expect. And I was NOT excited.

After my first treatment, the side-effects took about a week to hit me. I was only tired and achy until day six, when my stomach cramped up with nausea, and the mild itching I’d been experiencing ramped up a thousand times. My back, my front, my scalp, my ears—everything itched. Constantly. I tried Benadryl for the rash, but that just made me sick and tired.

And still itchy.

Thankfully, after a few days, the nausea waned to occasional flare-ups, which I could mostly relieve with gallons of diet ginger ale. But the itching continued—and it got worse. By last Sunday night, my skin was so inflamed, I could barely open my eyes. Brad emptied the drugstore shelves of their hydrocortisone, and that helped some. Then my doctor called in a prescription for another anti-itch cream as well as anti-nausea pills, and that helped some, too. But by and large, I was going CRAZY. Everything itched, and it itched bad. On Tuesday morning, I had to drive to Grapevine for a CT scan (about an hour away in rush hour traffic), and I was wriggling around in my seat like a woman possessed. I kept thinking, “This can’t be safe. I’m not even close to concentrating on the road.” All I could think about was the back-scratcher at home in my closet and how I wish I’d brought it.

But I survived, and I even drank the nasty CT scan barium they gave me without throwing up. That was a victory.

So on Wednesday morning, as Brad and I drove to Dallas for Infusion #2, I was dreading it. I’d been told the side-effects would probably get worse which each treatment, and I couldn’t imagine feeling worse than I already did. A friend of mine told me she sometimes wants to kick and scream and throw a tantrum before her infusions because she just doesn’t want to go through it all again. I thought of that many, many times as I grit my teeth and made my feet walk me back into the room with all the recliners.

When the nurse attached the IV, I glared up at the stupid little bag with my best Look of Death, but it didn’t work. The spiteful thing just kept dripping like it didn’t care. So I burrowed under the super-soft furry blanket I brought and felt sorry for myself.

And itched.

Three and a half hours later, the bag was empty and we drove home, me itching all the way. I headed straight for the shower, where I stood under the hottest water I could stand because the burn feels like a whole-body scratch (I KNOW hot, hot water makes rashes ultimately worse, but at that point, I was past reason). Then I lathered my whole body with the anti-itch creams and popped a Zyrtec, which my doctor had told me that day might help. I put on my softest jammies and ate the yummy chicken dinner my friend had brought while I watched my kids decorate the Christmas tree I hadn’t had the strength/desire to put up yet.

Jessica and Pepper had arrived home for Christmas the night before, and they had holiday music playing while they unpacked the bins and strung up lights. Jess is a bit of a Christmas drill sergeant, so she had the boys toeing the line as they hung our old, mismatched ornaments. We do not have a designer Christmas. Our tree is covered with construction paper bells and popsicle stick frames made by my kids, with their little preschooler faces grinning from faded photographs. We have a few cheap IKEA balls and various ornaments we collected as souvenirs from the places we’ve visited, but it's a real hodge-podge—nothing like the gorgeous trees I see in other homes with beautiful matching bulbs and lux ribbon wound around perfectly coiffed and embellished décor.

Every year, Brad makes some subtle comment about how our tree needs work (this year, he’s been saying he wants to start a business where people can order Christmas tree kits, with all the items needed for a perfectly put-together tree), and every year I ignore him. I like our ugly family tree, and I like that each item has a story we all remember as it gets hung. Even the odd little ceramic village Jess set up on the mantle makes me smile. It’s mostly pieces from my Grandma Darrington’s collection, which are from some decade where the people looked like cherubs and the houses were trimmed in gold and sparkles. These are mixed in with the little houses I bought in Germany, with their clean, crisp lines and charming European architecture. It is like no town in any world, but it has a place in my home. It represents my people and my past, and I love it.

So I sat on my couch and watched the Bitner Christmas magic take shape while Bing sang about snow and Wham! lamented their last Christmas. After about an hour, I stood up to put away my empty chicken plate and realized something:

I wasn't itching.

I WAS NOT ITCHING!!

No, this is not a post about Christmas spirit and the miracles that come when we “just believe.” While all that is awesome and I was certainly feeling the cheer, I am realistic enough to give credit where credit is due.

My new favorite pill.

Merry Christmas to all, and to all an itchless night.

The highest form of Dreamy

Yesterday, I went into Dallas for my first immunotherapy infusion. I’m not gonna lie—it was a loooooong day. We had to leave before seven a.m., and as we were driving there, Brad speculated that maybe he’d have a chance to go golfing with Lukie that afternoon. Yeah…no. This turned out to be an all-day affair. We started with the doctor’s financial counselor, which turned out to be one of those fun appointments where we learned the $100,000+ treatment is essentially going to be free to us (thank you, good insurance!). Then it was off to the lab for bloodwork, and from there a visit with Dr. Cowey before the scheduled infusion.

I’m still not used to the idea that I’m a cancer patient. Sitting in the infusion waiting room freaked me out a little, as all stages of cancer are in living display. It’s hard for me to feel like I belong there—I think of the other patients as “poor them”, not me. Somehow, in my mind, I’m the exception to the ravages of cancer. I don’t know if that’s a good thing or a bad thing, but there it is.

Of course, things got real—fast—when they took me back to the infusion room.

The room itself is huge. It takes up about half a floor of the cancer center—all open—with recliner after recliner lined up facing each other in groups of eight. We were directed to a section and told to take a seat, but we kind of stood there for a minute or so, feeling stupid. Should I sit in one of the recliners like I belonged? That didn’t seem right. There were some regular chairs lined up in the center, so I sat in one of those, then stood up again because that didn’t seem right either. Finally, I approached a recliner by the window and perched on the edge of the seat. That worked. It was clearly where I needed to be, but I wasn’t comfortable. I wasn’t ready to be comfortable in an infusion chair.

From what I could tell, each group of eight chairs is manned by its own nurse, and I was lucky to be assigned Leila. She brought me a blanket and explained the buttons on the chair—it heats up and massages if you want it to, which I didn’t (that would make it comfortable and I wasn’t going there). Then she sat down and talked to me, explaining everything in a way that acknowledged this was the weirdest thing ever while she acted like it was the most normal thing in the world. I will definitely request Leila the next time I go in.

Brad pulled a regular chair over (lucky guy) so he could sit by me, and Leila hooked me to the IV. I stared up at the bag full of clear liquid and thought well, here we go. That’s the stuff that’s supposed to save my life and may turn it upside-down in the process.

Then I pulled up my book on Brad’s phone, and tried not to think about what was dripping into my arm.

Not long after, a 50-ish couple arrived and took the seat directly across from me. They made quite a stir—they came laden with bags and blankets, the husband dragging a huge ice chest. He looked like a tall Dallin H. Oaks in jeans, distinguished and bald, with the kind of face that has always been handsome. His wife, on the other hand, was a tiny little firecracker. She claimed her seat, then popped up and rushed over to the nurses’ station to chit chat and hug everyone behind the desk.

This was clearly not their first infusion rodeo. While the wife socialized, her husband set up some kind of station next to her chair, unpacking the ice chest which appeared to be full of helmets packed in dry ice. He had a clip board and special gloves and a fancy thermometer, and he bustled about very purposefully, placing his stuff just so and checking and double checking to make sure it was all where he wanted. 

I tried not to stare, but it was impossible not to watch him. I kept thinking, this is a man who has to DO something, and believe me, I understand the impulse. In a situation where you have so little control, it’s comforting to feel like you’re doing something to help. This man clearly needed that, and he was taking his role of supporter and Helmet Guy very seriously. He filled her water bottle. He laid out her blanket. He set the timer on his phone and checked the helmets. He marked something on his clipboard. He checked the helmets again.

Of course, by now I was intensely curious. What was the deal with the frozen helmets? Is that something I was supposed to have? Nobody else had them—most patients I could see were dozing in their recliners while IVs dripped quietly beside them. There wasn’t another ice chest or helmet in sight.

His wife returned to her chair, and I fake-read my book so they wouldn’t think I was staring. When I next looked up—

Yikes-a-Friday!

 

She was outfitted in one of the helmets with a big bright silver shower-cap-looking thing over the top of it—she looked like something out of the Jetsons! I shot my eyes back down to Brad’s phone, wondering how I was going to pass the next couple of hours without openly gawking at her. Brad and I shared a quick what-the-heck look and went back to looking everywhere except at the spectacle across from us. But of course it had all our attention.

Leila set up the woman’s IV, consulting the husband at every step. He checked the time and marked his clipboard, occasionally adjusting the cotton strips he’d tucked around his wife’s helmet and asking her how it felt. She’d just nod and give him a little smile, but I learned later she couldn’t hear much with that thing on. I overheard Leila say she’d given the Ativan, and it wasn’t long until the wife was sound asleep in her silver afro.

Duties apparently over, the husband took a chair not far from Brad. He fidgeted a bit, again rechecking his “station”, then heaved a little sigh, smiled at us, and said, “You have to really want to keep your hair to go through all this.”

Ahhh. I’d wondered if this was about that. The man introduced himself as Rick, and proceeded to explain the system we’d all been not watching. He told us his wife—Emily, I think—was on her second round of chemotherapy, and she didn’t want to go bald again. She’d had breast cancer four-ish years ago and gone through a mastectomy and chemotherapy for that then. Her hair had just come back when she learned the cancer had spread into her abdomen. She couldn’t face losing her hair again, so they’d found this helmet system that was supposed to save her hair from the chemo.

He said they rented the equipment from some company that had also supplied them with all the instructions he so diligently consulted on his clipboard. Basically, they freeze her scalp so the chemo won’t affect the hair follicles. Chemo looks for and attacks fast growing cells, and freezing her scalp during the treatment slows down the follicle cells so the chemo leaves them alone. He very proudly told us she was on her fourth treatment with the helmets and still had a full head of hair. It appeared to be working.

Over the next couple of hours, Brad and Rick became best friends. They are both businessmen and love golf and other man things, so they had lots to talk about. We learned they live in Kansas, but have a daughter who is a nurse at the Baylor cancer center, so they travel down to Dallas every three weeks for Emily’s treatments. They feel like it’s worth it to be around family for her treatments (all three of their kids live in Texas), and their daughter’s connections and inside knowledge of the Dallas center make them feel they are getting the best care available.

I mostly read my book and let them bond, but occasionally we’d all be interrupted by Rick’s phone alarming. He’d hop up—sometimes mid-sentence—and fetch a fresh helmet, which he’d have to crack and loosen up so it would fit properly on his wife’s head. Then he’d gently wake her up, remove the old helmet, squirt water all over her head with a spray bottle, and replace all the layers. Once she was set, he’d help her lie down again, tuck her blanket around her, and come back to chat with Brad. Rick spoke very glowingly of his wife and her proactive approach to fighting cancer, and it was obvious he’s taken an active role in it all as well. They clearly make a very good team.

But more than that, I was touched by the tenderness with which he treated her. He joked about his own bald head and how he wasn’t worried about losing hair, but his expression softened when he spoke of his wife and wanting to preserve her sense of normalcy. And his actions proved he meant what he said. There was NOTHING more important to him than his wife and making sure he followed her helmet regimen to a T. Everything would stop when it was time to switch them out, and he very carefully referred to and documented everything on his clipboard. When Emily woke up briefly and needed a trip to the restroom, he unplugged her IV pump and walked with her. Later, he helped her find juice and pudding in the snack refrigerator, making sure she had a napkin and spoon. She was pretty drugged up the whole time—he told us the cold gave her a terrible headache, so the doctor prescribed a sedative to help her get through it—but he was 100% attentive. And so kind. He hovered and watched and touched her like she was the most precious thing in his world.

We finished before they did and said goodbye, leaving Rick and his wife surrounded by all the helmet paraphernalia. My own husband took my hand and carried the many Diet Cokes he had purchased to get me through the afternoon, then helped me into the car and drove the two hours it took to get home during rush hour. He’d missed a full day of work to essentially sit in a hard chair and watch me read, and when I thanked him for being there with me, he looked at me like I was from another planet and said, “Of course.”

Then he smiled and squeezed my hand because I’m the most precious thing in his world.

When Jessica was in high school, she’d tell me about different boys she liked and why she was attracted to them. I always loved it when she’d list kindness or goodness or patience. I’d nod and agree with her. “That’s the highest form of dreamy,” we’d say.

Rick at the cancer center probably won’t ever be a Calvin Klein model or be voted People magazine’s World’s Sexiest Man. Neither will Brad, though I think if People ever saw him, he’d be a contender. But both of them have “the highest form of dreamy” down. As I told Brad, when we were stuck in the car and reliving the events of the day, every cancer patient should have a man in her life like Rick.

Then I reached up and kissed his cheek.

Because I do.

Drowning

(I’m writing this from the deck of a cruise ship, so if this gets a little heavy on the ocean/water/boat analogies, I apologize. Actually, I apologize for a lot of it. Sorry if this is whiny, but I promised myself I’d keep things honest. So, here’s honest and whiny.)

I’ve learned I can’t overestimate the importance of a plan.

In September, when I first learned the nature of my cancer, I felt as though I’d been thrust into the middle of an ocean with no salvation in sight. I flailed about, emotionally treading water, but it was panicked flailing and not at all productive. Frankly, I spent more time with my head below water than above, and even when I did come up for air, I did more sputtering than actual breathing.

I was drowning.

Then, after some trial and error, Brad and I found doctors we felt confidence in, and suddenly we had a life raft. We had a plan:

1.  Brain radiation mid-October.
2.  Immunotherapy clinical trial, which will combine two cancer fighting drugs with an additional drug that should lessen the worst of the side effects. The trial required an MRI four weeks after the radiation to check the status of the brain lesions, so I’d do the blood work, CT scan, exams, and various random tests to prepare in that time. We’ve had a Thanksgiving cruise planned since March, and the doctors encouraged me to spend a wonderful don’t-think-about-cancer week with my family, then come home and start the treatment immediately afterward.
3.  Spend the next several weeks/months tied to a two week infusion schedule, which might make me feel crummy, but would be for a good cause. Operation Kill Melanoma.
4. Cancer will be obliterated, and I’ll live happily ever after. 

In the middle of our storm-chopped ocean, we heaved ourselves onto this plan and were finally able to breathe. We turned our faces in the direction of a Happily Ever After and started paddling that way. We couldn’t see land, but we started to believe it was there, and I will say it again: there is no overestimating the importance of the plan. This plan was EVERYTHING. The plan gave us hope.

Until it fell through.

Wednesday morning—four days before we left on the cruise—I learned the clinical trial had been cancelled. Patients were getting more sick with the added drug, so the FDA shut it down until they could figure out why.

Plan kaput. Life raft popped.

My upcoming appointments and scheduled treatments had been arranged through the trial, so they were all cancelled. I was going to have to start over with my oncologist’s office, and there were less than three business days to get it figured out before I left for my vacation, where I would be unreachable for a week. I felt a sense of urgency to get it all going; preparing for the now-defunct trial had put us three weeks behind in starting treatment, and I didn’t want to let any more time pass.

But more than that, I no longer had a plan. I needed something to hold onto.

The clinical trial woman told me she’d contacted a different nurse, and this nurse would call to get the new ball rolling. So after hearing the news Wednesday morning, I anxiously awaited a phone call about setting up the new plan.  

She didn’t call.

Thursday morning, I called and left a message, letting her know I would be unreachable for the week of my cruise and needed to set things up before I left. Her voicemail promised she’d return all calls by the end of the day, so I kept my phone close and went about preparing for my cruise.

She didn’t call.

Friday afternoon, I left another message, more curt than the last. About an hour later, she finally called back. However, as she started to recite the scheduled appointments, she hesitated, paused for a few seconds, then said what they had wouldn’t work. Someone had scheduled the first infusion before I met with the doctor, which I guess is a no-no. She fumbled a bit, and told me she’d have to fix that and get back to me. She also promised I’d hear from her by the end of the day.

I didn’t.

At six o’clock Friday night, I called again, hoping maybe she was still there.

She wasn’t.

So I left a message—tearful this time—that basically said I was leaving and didn’t know what to do.

Brad came home that night from a work trip in London and found me sobbing in bed. Poor guy didn’t know what hit him, so he just held me and let me cry. Then he ranted about how dumb that nurse is (the perfect response) and offered to call and yell at her (also the perfect response, even though both of us know it would be counterproductive and he’d never do it). 

Instead, I called her on the way to Galveston and gave her Brad’s number, as he has international coverage and may be able to retrieve messages when we’re not at sea. It wasn’t the perfect solution, but at least she could let us know what we needed to plan for when we got home. And more importantly, I could stop stewing and feeling forgotten. I could stop flailing in the middle of my ocean.

Except she never called.

It is now the last day of our cruise. We have stopped in three ports of call, and Brad has had coverage in all of them. 

There is still no message.

I know this nurse is busy. I know she has probably hundreds of other patients to think about, and many of them are likely dealing with more urgent matters than making a simple appointment. It’s possible she remembers I won’t be home until Monday the 27^th, and she’s waiting until then so she can talk to me directly. I know I might be over-sensitive and blowing this whole thing out of proportion.

I know, I know, I KNOW.  I tell myself all of these things, and they make perfect sense in my head. But I can’t seem to get the message to the rest of me. 

The rest of me feels dejected, not knowing if anything will happen next week. I keep imagining all the little cancer cells growing and getting nastier, gnashing their stupid little melanoma teeth as they party unchecked in my body like the drunk people whooping it up on this cruise ship. Worse, I feel forgotten—that the absolute WORST thing that’s ever happened to me is not important enough to warrant a simple phone call. 

I feel lost in my ocean, with no search party in sight. 

I feel as though I’m sinking.

Update: We arrived home Sunday to messages on both my phone and Brad’s. They were time-stamped on Monday, so the nurse called as soon as she got to the office after the weekend. I don’t know why we didn’t see the message on Brad’s phone sooner, but phones are a mystery to me, so whatever. 

All is arranged: I will begin the immunotherapy treatment on Wednesday, Nov. 29. It is not through the clinical trial, so the infusions will consist only of the drugs that stimulate my immune system (standard of care). I will not take anything to lessen any of the side effects unless I need to. Here’s hoping I don’t need to.

So, it’s all set to go, and I’m reading through my post and feeling like a baby. You know how you get all tied up in knots over something, but then as soon as it’s resolved, you can’t remember why you were so bugged? Yeah. I’m doing that. But again—whatever. 

Honest. Even if it’s whiny.