A win?

We’ve had a long day at the cancer center, and this is where things stand:

Good news: The two brain lesions we treated with radiation surgery in October are significantly smaller, even the big, ugly one. This is exactly what we were hoping for. They should continue to shrink, which we will watch over the next two or three months.

Not-so-good news: The MRI from last Thursday shows I have four new brain lesions. Two of them are teensy, tiny—in fact, too small to treat with radiation right now (the doctor said if they tried, they’d likely zap more healthy tissue than bad, because they’re too small to aim for accurately).  We will watch these carefully and act as necessary in the future. The other two new lesions are also quite small, but can be treated. I will have the same radiation surgery on these that I had in October, hopefully within the next couple of weeks.

So-so news: The labs on my inflamed liver came back, and the numbers are sky-high again—as high as when I was hospitalized (which is why I’ve been feeling so crummy this last week). Luckily, the doctor feels we can bring it down without IV steroids, but I’m back on a high dose of oral steroid and will be for a while (six-ish weeks) until my liver is back to normal. This sets us back as far as resuming any immunotherapy treatment, which I’m kind of glad about because immunotherapy sucks. But at the same time, we need to do something systemic (immunotherapy) to keep these stupid new lesions from popping up. When we resume immunotherapy, it won’t be the same combination of drugs we’ve already done, because those have proven to be too dangerous for my liver. I will probably just take one drug (either nivolumab or pembrolizumab), which isn’t as hard side-effects-wise, but also isn’t as strong a melanoma-fighting weapon. So, that kind of sucks, too.

So…yeah. On the drive home from Dallas, Brad and I couldn’t decide if this was a good or a bad day.

But then I came home to a couple of things that tipped the scale into good.

1) A package on my doorstep full of favorite things—including Brian Regan DVDs; how’s that for a great idea?—from my aunt and cousins who know too, too, too well the gauntlet cancer runs a family through. 

2)    An anonymous gift of a luscious blanket and this va-va-voom eye shade.

For some reason, this cracked Brad and I up when I modeled it for him, more because of our taut emotions than because of any real humor, I’m sure. But it was just what we needed.

All-in-all, I’m going to call today a win. We have some progress and some regression, and frankly I’m relieved to know there’s a reason I still feel so lousy and I’m not just being a big baby. I’m armed with my bucket of steroid tablets and hope to start feeling better soon. The radiation surgery doesn’t scare me like it did before, and I feel very blessed we are catching and attacking these new brain lesions so quickly. And for now, I have some time away from immunotherapy to focus on planning my sweet daughter’s wedding, which is what I’d much rather think about anyway.

Thank you for the prayers, gifts, thoughts, and above all, love. They are real, and they’re working miracles in my soul.

Miracles, the mundane, and milk

Ya’ll know I like to write. About four years ago, when I was picking at—and botching—my first attempt at a novel, I joined an online writers’ workshop to get a little help. There, I met a community of writers, and as tends to happen when like-minded people get together, formed some friendships. Some I have met in real life, most I have not, but I bonded with a few, and we developed a relationship in which we exchanged work with each other for feedback, both on the workshop site and via personal emails.

One of these partners was a Christian literature writer from Colorado (I’ll call her C). While Christian lit is not my favorite, we both share a love of historical fiction and enjoyed chatting online about our writing goals and personal values. About a year after we “met”, C told me she was working on a non-fiction piece comparing different core beliefs among Christian religions and asked if I would give her feedback on the Mormon section. 

I, of course, agreed.

So she sent it to me, and I waded through about fifty pages of half-truths and misunderstandings. She’d clearly done a lot of research, but sadly most of her sources weren’t affiliated with The Church of Jesus Christ of Latter-day Saints (that’s the real name of the Mormons), so the doctrines and interpretations were pretty screwy. I did my best to correct and explain, and suggested more reliable sources, which she seemed appreciative of, and I think it turned out to be a good collaboration. 

But one email exchange stands out in my mind, and I have thought a lot about this topic in the years since.

Miracles.

This was a big deal to C, and as a Christian believer, she felt miracles were a key component to her testimony. She shared some miracles she’d experienced in her life—things like family members’ lives being saved—and asked me if I’d ever seen a miracle.

“Well, yes,” I thought. “I feel like I see the hand of God in my life all the time.” So, I sent her a link to a blog post I wrote at the end of our stay in Germany in which I detailed how I’d felt God promise to look after me and then listed many of the ways I’d seen Him do so. I’m not gonna lie—I’m kind of proud of that post, and I expected her to respond with some glowing praise. 

Instead, I got an email that said something like, “No. A miracle.”

Huh?

So I typed back, “what do you mean?”

She proceeded to explain that a miracle is a BOOM moment in which God swoops in and fixes something terrible, or makes something right, or in some way changes the course of a person’s life BIG TIME. In her view, a miracle needs to be scientifically unexplainable or otherwise impossible so there is no denying God is the one behind it. She then said something interesting.  “You Mormons always do this. Whenever I ask for a miracle, you tell me about something that just happens in daily life. That’s not a miracle.”

Oh. I guess I didn’t know that.

I didn’t respond for a few days. Her statement gave me pause for a couple of reasons: 1) because even though my “miracle” wasn’t big, it felt like a miracle to me, and 2) I didn’t realize this was a phenomenon among Mormons. I suppose it’s fair to say I am a product of my upbringing, and having grown up in the LDS church and listening to testimonies and lessons and talks, I had learned to look at my relationship with God through a Mormon lens. We Mormons believe in prayer and answers and having a connection with deity that allows for personal revelation. You know, miracles. Right?

It’s always interesting to me to discover the world isn’t only what I know, so I thought a lot about what C said and about how my beliefs must look to her. I tried to explain to her how I feel like God is my Heavenly Father first and he is there to provide support and love through anything I may need help with. She countered with her own beliefs, which sounded to me like God’s role was more of a puppet master maneuvering the lives of His people. It was a respectful exchange, though in the end we agreed to disagree on this point and eventually moved on to other topics.

But I think about it still, especially lately when I’ve been so desperate for heavenly help. It’s amazing how REAL and NECESSARY God feels to me as I am forced to consider where this cancer could take me. Right now, I’m certainly not at death’s door, and honestly, I’m filled with a lot of hope that the treatments I’ve done so far will be successful. But I can’t ignore the chance they won’t be, and I can’t ignore how serious my situation is to warrant such drastic actions. This last month on immunotherapy has been HARD, emotionally and physically. Cancer is big and awful. It requires a big, awful fight. 

And realistically, someday it will probably kill me. I don’t say that to be dramatic, but to be honest. Melanoma likes to lurk and hide, and though we may wipe it away now, there’s an excellent chance it will come back. I will deal with scans and tests and possible treatments for the rest of my life, and one day—hopefully in a LOT of years—it won’t go away again. I’m okay with that.  It’s not like I never thought I’d die. I’m just fighting for more time before that happens. A whole bunch more time.

But last week, that fight felt daunting. Ya’ll already know the story of the non-infusion day and how I ended up in the hospital with an inflamed liver. I was so sick ya’ll—soooooo sick—and I had several people tell me they were fasting and praying specifically that I could eat. I can’t tell you how miserable I was every time I put something in my mouth, and that misery spiraled down and down into a cycle of not eating, then feeling worse because I hadn’t eaten, then feeling even worse when I tried to eat again, then feeling even worse when I didn’t. Things were getting dire, and the twelve pounds l lost in a week was just another reason my doctor sent me to the hospital. I didn’t realize this until later, but the nurses had instructions to record everything I ate as well as every time I threw up.

Which is all very well and good, but nobody could do anything to make it better. With the nausea and dry mouth, I simply couldn’t eat. I was on a constant IV, which helped keep me fueled and hydrated, but every time the nutrition people brought a meal tray, I spent the first five minutes or so staring at it with the same helpless knot in my gut I’d had at home. I’d try, always with the fruits or veggies first as I could swallow them, and then I’d move onto a soup or saucy entrée, chasing down every bite with a sip of ice water from my ever-present hospital mug. It was gross—water in a dry mouth tastes like chalk—so after a bite or two I’d have to stop so I didn’t puke up what I’d gotten down.

The second day I was there, my lunch tray appeared with applesauce, some kind of BBQ pork sandwich, and steamed broccoli. I ate the applesauce, then turned to the broccoli, which proved to be much drier than it looked. As little broccoli goobers adhered to my teeth, I reached for my water, my stomach churning, only to see the nutrition person had moved my mug when he set down my tray. It was on a table out of my reach, and I was trapped in bed under the tray holder with my stomach lurching dangerously.

So I reassessed. Applesauce was gone, BBQ pork seemed like a bad idea, but…there was that stupid carton of milk that comes with every hospital meal. I’m not much of a milk drinker, and frankly, the dairy products I’d tried to eat (yogurt, ice cream, cottage cheese) had left me with a icky, sticky coating in my mouth, so I’d been ignoring the milk. But in this moment, it was the only liquid available, so I tore into the carton and took a swig.

Hold.

The.

Phone.

The milk, still ice-cold from the fridge, slithered over the broccoli goobers and slid them right off my teeth. I took another swig. It didn’t taste like chalk. So I got brave and nibbled a bit of the sandwich bun, immediately following it with a sip of milk. It went right down, and IT WASN’T TERRIBLE. In fact, it was sweet and kind of good.

I felt like a kid on Christmas. This was mind-blowing! I was able to eat the whole top bun from my sandwich and even some of the pork. Meat and milk—not necessarily something I’d ever put together—but it WORKED. And I didn’t throw up.

This was a big turning point. From that point on, I made sure I had plenty of milk with every meal and snack, and I was able to eat more and more. I think something about the fat content mimics saliva, because milk works soooooooo much better than water to wash food down. And if it's icy, it doesn't add much taste to the food or leave a dairy residue. By the time I left the hospital, I felt so much more confident in my ability to take care of myself and eat what I needed. On our way home, Brad and I stopped at PF Changs while we waited to fill a prescription, and I ordered lettuce wraps and milk. Yep. It worked. I was able eat a couple with zero puking. Never mind that I looked like a five year-old with my cute little milk with a straw.

I’ve now been home a week and haven’t thrown up once. My appetite still isn’t back, but I find I can eat anything that sounds good if I pair it with a 2% chaser, and I’m gaining some of my weight back. But more than that, the frantic, spiraling hopelessness is gone. No more food torture! We’ve stopped the infusions, but my doctor told me it could take a month or more for my dry mouth to go away. That seemed like a death sentence at the time. Now, I know I will make it.

So…is this a miracle?

I guess I can’t answer that for everyone. C wouldn’t think so, and probably some of you are thinking it was a simple, happy coincidence—it was just a well-placed carton of milk, for crying out loud. Okay. You’re allowed to call it whatever you want.

But so am I. And I think it was.

One of my all-time favorite books ever is Cold Sassy Tree by Olive Ann Burns, largely because of a scene that happens in chapter 48. In this particular passage, twelve year-old Will Tweedy is eavesdropping on his grandfather’s conversation with his wife, Miss Love. Grandpa is sick in bed and he and Miss Love are talking about God and what it means when Jesus said “Ast, and it shall be given,” when it’s clear not everyone gets what they pray for, and lots of people get blessings they never ask for.

Miss Love responds by saying sometimes God just says no, but Grandpa shuts her down with, “You sound like ever preacher I ever heard. But Jesus didn’t say God might say no when we say gimme. He said God’s go’n say yes. Anythang we ast for, we go’n git it. Well, hungry folks pray for food, but they shore don’t all git fed. And sick folks beg him for healin’, but lots of’m die, or maybe live on in bed. Jesus had to mean something diff’rent from what folks think He meant, else to my mind He was a dang fool to go round promisin’ what God wouldn’t do. But Jesus warn’t no fool, Love, so what did He mean?”

They then go back and forth for several paragraphs about the possible sacrilege of his questions. Grandpa finally responds with one of the most profound thoughts I’ve ever read, and even though Cold Sassy Tree is not scripture, the words ring with truth for me:

“Well’m, faith ain’t no magic wand or money-back gar’ntee, either one. Hit’s jest a way a-livin’. Hit means you don’t worry th’ew the days. Hit means you go’n be holdin’ on to God in good or bad times, and accept whatever happens, Hit means you respect life like it is—like God made it—even when it ain’t what you’d order from the wholesale house. Faith don’t mean the Lord is go’n make lions lay down with lambs jest cause you ast him to, or make fire not burn. Some folks, when they pray to git well and don’t even git better, they say God let’m down. But I say thet warn’t even what Jesus was a-talkin’ about. When Jesus said ast and you’ll git it, He was givin’ a gar’ntee a-spiritual healin’, not body healin’. He was sayin’ thet if’n you git beat down—scairt to death you cain’t do what you got to, or scairt you go’n die, or scairt folks won’t like you—why all you got to do is put yore hand in God’s and He’ll lift you up. I know it for a fact, Love. I can pray, ‘Lord hep me not be scairt,’ and I don’t know how, but it’s like a eraser wipes the fears away…

“Jesus meant us to ast God to hep us stand the pain, not beg Him to take the pain away.”

During my weeks of illness, I've had lots of people praying for spit. Heck, I was praying for spit, harder than I’ve prayed in a long time. Then in the spirit of Grandpa Rucker Blakeslee, I also started praying for a way to eat, whether I had spit or not.

It didn’t work.

So I’ll admit it—I stopped praying. I just felt sorry for myself. 

But ya’ll didn’t quit, and more importantly, God didn’t forget. While I agree wholeheartedly with Grandpa Blakeslee that faith is a partnership with God in which He helps me to change to meet the challenges I face, I also agree with C that sometimes a loving Heavenly Father inserts Himself into my life to remind me He’s here and He loves me. And sometimes that means fixing a seemingly impossible situation.

Hence, the miracle of the well-placed milk.

While I was thinking about this post, a dear friend from Michigan stopped by with this gift she made. It’s a super soft crocheted sheep, and as she put it, “I wanted to give you something to remind you that you have a shepherd.”

Yes, I do.

And He works all kinds of miracles.

*********

Since many are asking, here are some “How you doin’?” updates:

Brain lesions: I will find out this Wednesday (Jan. 24) if the radiation I had in October shrunk the two lesions in my brain. One lesion was smallish and the doctors were fairly confident radiation would destroy it. Another, deeper and near the center, was about an inch in diameter and more concerning. I’m not sure what the next step will be if the first radiation didn’t work, so we’re all hoping it did. I will post once I have the news—probably right away if it’s good, and maybe a little slower if it’s not. Wednesday will either be a really good or really bad day.

Liver lesions: Immunotherapy is on hold for the foreseeable future while my inflamed liver heals. I am on a high dose of oral steroids to speed up the process, but unlike when I took them before, I am not at all revved up with ‘roid rage. That tells me my body is soaking up and using all the steroid-y mojo. As I eat and get my strength back, the nausea is improving and I find I only need anti-nausea meds in the morning. I am uncommonly tired, most of the time feeling like I’ve got a sack of bricks on my back, and nap several times a day. Yesterday, I went to an hour and a half of church, and despite the fact I didn't do much besides sit on a padded pew discreetly sucking sacrament bread out of my teeth, I still collapsed on the couch as soon as I got home and didn’t move for four hours. But then I ate a cupcake—with milk!—and counted my blessings. I will have a detailed CT scan sometime mid-February to determine what treatment, if any, the liver lesions will still need. The doctor says it’s possible we’ve already done enough (fingers crossed).

The best bad news ever

If you read my last post, you know I was D R E A D I N G yesterday (Thursday) morning, which is when I was scheduled to have my third infusion. I just didn’t know how I was going to make myself walk into that building and subject myself to the same poison that made me feel so horrible already.

It was a very emotional morning, to say the least. We had to leave by 6:45, but I was awake long before then after having spent the night feeling sorry for myself instead of sleeping. Brad and I showered and got dressed, I gagged down a bit of egg and some Naked juice—puking only a little—then we packed up my furry blanket and Kindle and set off.

We ran into some rush hour traffic, but still arrived at the cancer center about a half hour early. We checked in and waited in the waiting room to get my blood drawn—the first step in every infusion day. It was crowded, and I kept looking around the room wondering if it would be totally selfish to lie down on one of the couches. Don’t worry, I didn’t. I opted to lean on Brad, which was better anyway, because, well…he’s dreamy.

From there, we moved over to my doctor’s office—always the second step of any infusion day. By now, I was good and nauseous and plotting the fastest way to get my Barf Ziplock out of my purse should I need it. The nurse weighed me, and I was shocked to see I weighed even less than my bathroom scale had said. When Dr. Cowey came in, he asked how I was, and I didn’t even try to sugarcoat it. I just looked up from my slump on the chair and mumbled, “Not great.”

We then talked about the side effects I’ve been having, concentrating on my dry mouth and inability to eat. He listened and offered suggestions—all of which I’d tried—and we started to discuss options to help me get through this, one of which was to pause my infusions for a while so I could feel better. As attractive as that sounded, I was nervous that postponing the treatments would a) prolong the torture, and b) impede any progress we’d made so far. He assured me b) wasn’t the case—in fact, he said he’s seen patients who had to stop treatment do every bit as well as those who powered through.

In the middle of this conversation, his computer dinged with the results of my bloodwork, and his eyes widened slightly as he looked at the screen. “Okay,” he said. “You’re definitely not getting an infusion today.”

Apparently, the numbers for my liver were scary high. I don’t know what all the acronyms were, but he showed us three results that were in the one- and two-thousands--three weeks ago, they were in the fifties. One of the common side effects of my immunotherapy drugs is an inflamed liver, and I certainly had that, despite not having any of the warning signs they’d warned me about (pain in the ride side of my abdomen, yellow skin and eyes). I’d just felt like death on a cracker.

Well, the conversation went a different way after that. Now we were talking about getting me on an IV steroid that day, and he left to get that arranged. When he came back, he’d upped his concerns and said it would probably be best for me to be admitted to the hospital to have a mega dose of the steroid to get the inflammation down and also to be sure I had help managing my blood glucose levels, as the steroid would wreak havoc with my diabetes.

So, that's what we did. Now I’m all tucked under my furry blanket in a hospital bed, having just spent my first night here. Hospitals are never fun, and I wouldn’t consider having an inflamed liver good news. But boy howdy, am I glad to be here! This is way better than being curled up at home dealing with another dose of that wretched immunotherapy. 

After I leave the hospital, I’ll take an oral steroid for the next few weeks, and Dr. Cowey said he’ll probably do some scans before starting any kind of treatment up again. He even hinted that we might not need continue this immunotherapy, and I darn near kissed him on the lips. It all hinges on what the scans say.

But for now, immunotherapy is on hold, and I give all credit for this reprieve to my army of prayers. Thank you for fasting and praying my liver into inflammation so I could have a break. It is such a relief to lie in this bed and let the pros figure out what will make me feel better instead of me guessing and failing and wanting to cry. I just eat (well…eat-ish) what they bring me and let medicine drip into my arm that is already making me feel more like a person.

Next week, I will have the follow-up MRI on my brain. The week after that, I’ll meet with the brain doctors, and they’ll tell me if the radiation I had back in October did its job. I don’t know if I dare hope the lesions are gone, but I’m going to pray for that anyway.

I’d sure love it if you’d pray with me. Clearly, ya’ll are very good at it.

The blessing I never thought to count

I’ve always considered myself a fairly appreciative person—you know, count your blessings and all that. When things get tough I can always find something to be grateful for, and often in my worst periods, I take Elder Bednar’s advice from the October 2008 general conference and offer prayers of only thanks. I, of course, start with my husband and my children, move on to extended family, my friends, my comfortable home (including a shout out for my bed, which always feels like a significant blessing at prayer time), and from there try to get creative, thinking of any little thing that feels like a blessing--slippers, Diet Coke, a car that starts, automatic sprinklers, that my dog doesn’t pee in the house, the dishwasher, my phone, blah, blah, blah.  You get the drift.  It’s surprisingly easy, and I feel better after taking a few minutes to list all the blessings I can think of.

But one blessing never made the list—I never even thought of it. Now that it’s gone, however, it has left a huge hole in my quality of life. After two weeks of misery, I would give anything to have this blessing back. ANYTHING.

Spit.

Saliva, mouth juice, slobber—whatever you want to call it, I have learned it is essential. I miss it every minute of every day. The immunotherapy drugs have sucked my saliva dry, and it is terrible. Without it, I can’t say more than four or five words before speaking becomes uncomfortable, and everything I eat turns to chalk in my mouth.

Everything. The worst is any kind of a starch, as it immediately gums up and sticks to my teeth so I can’t swallow. Crackers, bread, pasta, potatoes, rice, cereal—nope, nope, nope, nope, nope. Meats are a close second, as they turn to meat-flavored sawdust after a chew or two. Even gravies and most soups disintegrate into a powder-like substance, and anything with artificial flavor (drink flavor packets, sodas, Jell-o, ranch dressing) go bitter and chalky almost immediately. Eating is a horrible chore, and I honestly wake up each morning with the sinking thought, “what am I going to eat today?”

So far, I’ve had the most success eating fresh fruits and vegetables. They tend to have their own natural juices that don’t turn to powder, so I’m able to get a few down. But then another problem sets in—I am very nauseous from the drugs, and the raw stuff does a number on my stomach. So they don’t stick around long enough to do much good.

Bottom line: I’m eating almost nothing. I try several times a day, but am so grossed out after a couple of bites, I can’t continue. The good thing is I have no appetite, so I can’t say I’m hungry, but I feel very “empty,” which doesn’t help the nausea. I’m also losing weight like crazy, which isn’t fun at all when it’s forced.

I’ve been in contact with my doctor’s office about this, and have a prescription medicine I hope will help, although I’m told it won’t work until I’ve been taking it for 1-2 weeks. Brad emptied the pharmacy shelves of rinses, lozenges, and sprays that are supposed to help dry mouth, and they help some, just not when I’m eating. I’m also drinking gallons of water, so I don’t think I’m dehydrated. I’m just miserable. And complainy. And sick. I don’t know when I’ve ever been this sick.

“Kick Cancer’s Butt”—that’s something you hear all over the place, and it makes for a great t-shirt. Or “Beat the Bear”—my own mantra from my sweet daughter. When I was first diagnosed, lots of friends and family said stuff like “you got this!” and “you can fight it!”, and I balled up my fist and imagined forcing the cancer out of my body by sheer force of will. “Yes!” I thought. “I DO have this! I will beat this disease!”

But now I know what that fight means. And it’s way harder than simply deciding to hate it.

It means standing over your bathroom sink and breathing, breathing, breathing so you don’t throw up the water you just drank to take your anti-nausea pill. It means tipping your head back during the whole movie so you can see from underneath your swollen eyelids. It means hours of Project Runway because that’s all you have the strength to do, and shuffling around the house bent over like an old lady because everything hurts. Or realizing that smell really IS you and gearing up to take a shower that will probably make you vomit. Or getting up in the middle of the night to brush away the pasty taste in your mouth with even pastier toothpaste. Or staring into the fridge, wondering what on EARTH you can force yourself to eat, while your stomach gnaws with equal parts emptiness and sick.

But mostly, it means getting up on Thursday morning and driving to the cancer center in Dallas, where you will ease yourself into a recliner and keep your mouth shut while the nurse slides the IV needle into your arm. Then you will sit there for three hours while the poison slowly drips into your body, knowing every drop is going to make you even sicker than you were before.

And you won’t rip it out.

And you probably won’t cry.

But you might.

Then you will go home and curl into a ball and wait for the side-effects to come. Which they will, and they will suck. And you will whimper and you will moan and you will throw up and you will drink water that tastes like chalk and you will bury your head in your furry blanket and wonder if it’s even worth it. 

Beat the Bear.

Kick cancer’s butt.

You got this, Jill.

Fight.