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.

This is why I don't want cancer

Last spring, Brad’s parents got tickets for the whole family to go on a Caribbean cruise over Thanksgiving. We, of course, were thrilled—it was a cruise, for heaven’s sake, and spending a week hanging with Brad’s siblings and their kids sounded perfect. I adore Brad’s family (I sometimes tell him I married him just to get in), so we’ve been looking forward to this trip for months.

When we learned about my cancer in September, one of the first questions we asked the doctors was whether we’d still be able to go on the cruise. All of them said yes and were very supportive of us going and enjoying ourselves. The timing of my treatment was such that the cruise fell between my radiation and immunotherapy, so I anticipated a worry-free, get-away-from-it-all week basking in sunshine and delightful people. As I glibly told my father-in-law before we left, cancer was not invited.

But it came.

Stupid cancer stowed away on our cruise vacation and reared its ugly little face in all my best moments. In every glimpse of ah, this is perfect, a niggling little thought wormed its way in:

This is why I don’t want cancer.

Lame? Yes. Totally. But there it is. On this week, when everyone else is proclaiming gratitude for all their blessings, I keep having to disappear on the ship to go feel sorry for myself. Because my life is too good. 

I don’t want it to end. I don’t want to miss out on any of it.

It’s making for an odd cacophony of emotions. Every burst of happiness is accompanied by an equal slam of despair. Times like the formal night, when I wore a new dress and the most painful shoes known to man, but it was worth it because I felt goooood. Brad’s eyes lit up when he saw me, and I cocked my hip, giving him my best, but then I thought this is why I don’t want cancer, and the moment was over.

Or the night I stole into our dark stateroom after a late show and found Lukie zonked on his bunk. He stirred at my noise, and his sleeping face turned when I approached. My momma’s heart swelled, then broke at the cute little nose and twitching eyelashes I’ve kissed for eleven years. This is why I don’t want cancer.

Or the five minutes in Honduras when Brad had cell phone coverage and we got a call from Jessica telling us she got engaged the night before. We were in the middle of ziplining, perched on a rickety wooden platform overlooking the jungle, as our daughter described the perfect proposal orchestrated by McKay, a young man who already feels like part of our family. I listened to her gush about all the details, so obviously happy and in love, and I remembered how I felt when my own dreamy boyfriend proposed to me twenty-three years ago. Then that same dreamy boyfriend grabbed my hand as we listened to our daughter, tears in his eyes, and all I could think was this is why I don’t want cancer.

Or the night at dinner when Becky said something funny—I don’t remember what, but she’s always saying something funny—and as we all laughed and tried to keep the Diet Coke from shooting from our noses, I imagined this scene with my chair empty. And started to cry. Not for them, or even for Brad (well, maybe a little for Brad), because they’ll all be okay and Becky will keep saying funny things, and they’ll all still have Diet Coke at the ready to spray from their noses. But if I’m not there, I’ll miss it. I’ll miss every little joke and funny moment. I’ll miss them, and I’ll miss being there.

This is why I don’t want cancer.

So, yeah. I’m fun. Right now, I’m in quiet corner of the ship, looking over the pool deck swarming with probably a thousand people swimming and sunning and—for many of them—getting drunk. There’s something silly happening at the other pool—a belly-flop contest or something—and I keep hearing cheers. On all sides, there is nothing but blue ocean leading to blue sky, and it’s like we’re in our own little coconut-scented universe, separate from the world and its cares.

Except we’re not. On this boat of free ice cream and unlimited sodas and food at all hours, an ugly little critter lurks, poking me in the ribs and dampening the sun. It takes me mentally away from the cheering people and the family moments and makes me crave a few minutes by myself to hopefully put my feelings on a page and take them out of my heart. It makes me look over this scene and dig through my purse to find tissue to wipe away the tears before I meet everyone for lunch. I don’t want to ruin the fun.

This is why I don’t want cancer.