Giving Gracias

Dear Mom
I am grateful for you because you take care of me
thank you for being so kind
Thank you for helping me mom
I really appritiate it because I love you

Today, our youngest boy came home from 3rd grade with that note. We're not sure if he just did that spontaneously, or if he was prompted by some Thanksgiving-themed class activity. Either way, he's a sweet kid. And I'm starting off with that because it sets the tone of gratitude that this update needs to radiate. Get comfortable and buckle-up, everybody. This is a long one.

Tamara's treatment was on Tuesday this week and we've both decided that we like Mondays better. Our sample size of Mondays isn't enormous, but she never had to sit in the infusion center waiting room for two hours on a Monday. And I think Monday has spoiled us with seats near a window, allowing us to gaze at the Superstition Mountains for a few hours. Champagne problems, I know. We've truly been treated better than we could have expected through the first quarter of this treatment plan. I'm very grateful that seat placement and long wait times are the inconveniences we're noticing, because they're the things you notice when you're being spoiled.

The kind sister in our church congregation who volunteered to watch Evelyn for the morning was so accommodating as we were delayed longer than expected. And the feast that we were served that evening was exactly what we needed. You may remember from last week that Tamara's sense of taste is on the fritz and her bloodwork has been showing signs of anemia. She has tried to increase her consumption of greens and red meats for iron, and has been gravitating to mashed potatoes for nutritional enjoyment. Well, wouldn't you know it, the meal that was brought to us included roast beef and mashed potatoes. More gratitude.

The low hemoglobin count persists despite our efforts to boost it. But anemia is something that Tamara is familiar with. It's the cause of the ice-cold fingers and toes that I referenced in a previous update. Maybe we're just too familiar with it, but I'm not super concerned about the anemia. Also, that was really the only part of her blood work that was concerning. Crucially, the white blood cell counts actually increased a bit this week compared to last.

Tamara is trying to stay active and stick as close to her pre-cancer routine as possible. That includes morning walks when she's up for it - sunshine and exercise are good for all the measurables and great for all the intangibles. We feel incredibly blessed that we're 5 treatments in, and now that we're starting to get used to the hair loss, the biggest chemo side effect we've noticed is low-energy. But not to worry, Tamara is an expert napper, so she's well-equipped to address that particular side effect. I think part of the anxiety that comes with chemo is knowing that it can and probably will get worse. We're grateful to have been mostly spared thus far. 

I'm of the opinion that Tamara's relative strength is showing in how her body is able to bounce back every week. To what does Tamara owe this strength? Well, I think she's got a little bit of hobbit in her. ...

...

Let me explain. The uninitiated can't help but be ignorant of the fact that hobbits are more resilient to evil than the other races of Middle Earth. For example, the main character of the Lord of the Rings is a hobbit named Frodo, who was stabbed by a blade infused with raw evil. Yet, not only was he able to resist turning into a devilish wraith as a result of that injury, but he was able to be mostly healed. Even more impressive, after carrying a ring radiating the will and malice of the devil himself, Frodo was (again) remarkably unaffected. In the movie, Elrond (a wise elf character) has a conversation with Gandalf (a wizard) on the subject of Frodo's surprising recovery.

Elrond: "His strength returns."
Gandalf: "That wound will never fully heal. He will carry it the rest of his life."
Elrond: "And yet, to have come so far still bearing the ring, the hobbit has shown an extraordinary resilience to its evil."

Make sense, now? No? Okay, so you can be forgiven for not subscribing to that particular theory. It is, after all, based in fantasy. It's almost December, so Lord of the Rings is on my mind. But, let me try another approach.

A couple weeks ago, while Tamara and I were still grappling with the prospect of a long chemo journey, we had a conversation. Despite several conversations with the oncologist, and several journeys down the rabbit hole of internet-based self-diagnosis (which actually supported the oncologist's recommended treatment plan), Tamara was not convinced that chemo was needed.

As I talked with her, it became clear to me that she didn't truly feel the weight of her prognosis. To paraphrase what she has told me a couple times, "When I feel normal and somebody tells me that I have a horrible illness, I just want to tell them to leave me alone." She couldn't reconcile the idea of poisoning herself to heal herself ... when she didn't feel sick in the first place.

I was at a loss ... kinda. If you know me well, you have probably experienced what happens when I'm "at a loss." When I don't know what to say, I say more. It's not always a useful instinct. So anyway, I launched into a diatribe about the many people we've lost to this infernal disease. This thing isn't here to have a conversation and depart in peace. It's Johnny Ringo, Heath Ledger's Joker, and Jekyll's Hyde all in one. It wants your blood and your soul. It's an agent of chaos. It's the evil that lives inside you. Eventually, I was able to approach a salient point - that when cancer actually makes you feel sick, it's too late to fight it.

That's when we got to the heart of it. She kind of broke down and expressed that she didn't know if she was strong enough to do this. I did what I could to tell her of the strength that I've seen in her. Alas, I haven't quite mastered inception yet, so my reassurances weren't as convincing as they needed to be. For the time being, she would remain in a state of faltering self-confidence. Keep this in mind as you read on.

Tamara has been on a journey of self-discovery for some time now. She's been through a lot, and is learning to see herself as God sees her. We all have work to do in this regard, but her journey has been uniquely inspiring to observe. I referenced this in a previous update, which I guess I should just quote.

From the "Buzzed is Beautiful" update: 

Slowly, over the past 15 years, I've been privileged enough to watch as she's started to catch glimpses of that deity and loosen her restraints. Through some personal, spiritual experiences (usually involving music) The Father has helped her see what a prized daughter she is. Yes, we're all equally prized children of Deity and we all have a similarly impressive potential, but it has been the joy of my married life to watch Tamara shed her shackles.

Much of her personal revelation has been centered on her Grandma Packard, who passed away right before Tamara and I were married. She has felt support, guidance, acceptance, validation and pure love from the other side. These edifying messages have been conveyed through several uplifting songs, served to her Pandora playlist as she has been out running.

After the conversation described above, the one where she said she didn't feel strong enough, we went to sleep. She got up the next morning to go on a run and Pandora just happened to play a particularly-helpful song for her. 

She'd say "You are so much stronger than you even think you are
Let your heart, let your heart lead the way"
That's what she'd say...

Those are a few of the lyrics to "She'd Say," an Andy Grammer song that has carried the love and support of Grandma Packard to Tamara's heart on a few prior occasions. Each has been just as timely as this one, but this one was unique. For one, Tamara isn't just battling to find herself anymore. She's battling a life-threatening disease. For another, the image that the lyrics caused to flash in her mind was different this time. Instead of just seeing her Grandma Packard's loving face, she saw an additional loving face - my mom's face.

We received confirmation of Tamara's cancer diagnosis while we were planning my mom's funeral. My mom passed away in September after a year-long fight with kidney cancer. And on that November morning, after expressing self-doubt to her husband, Tamara was sent a message. When she heard the lyrics above, it was as if her grandma was speaking to her. Then in a different part of the song, she felt my mom speaking to her.

I'll be with you every step of the way... Remember God is like the sun, he always comes out just when you think the dark's here to stay.

With those two lines, Tamara felt both Martha Packard and Shelley Ray as if they were standing behind her with their hands on her shoulders. Some day, I'm going to commission a painting of that vision. I never want to forget it.

So, I guess what I'm trying to say is, thank you. Thank you for your prayers. You have all called down miracles, and angels have ministered to us on your behalf. We're under no illusion that we'll be spared from all of the gritty hardship headed our way, but we're grateful for the grace we've been afforded so far. There is power in heaven and we thank you for calling it down.

If you thought the thanks were done, you'd be wrong. Not only have you all moved heaven for us, but you've moved some decidedly terrestrial forces as well. I've struggled with the best way to express my gratitude for all the financial support we've received, and with Thanksgiving drawing so close, I've decided to just start typing and see what happens.

Let me start by sharing some breaking news: cancer treatment is, like, super expensive, you guys. We've been told by several healthcare providers, in no uncertain terms and without hesitation, that we'll be paying our annual maximums in 2024 and 2025. Probably 2026 as well. And if it were just that, it would be a millstone around our necks for years, if not decades to come. But unfortunately, a life-altering disturbance like this comes with some aftershocks that, in some ways, cost more than what we'll pay to the doctors and hospitals.

With these financial realities in mind, and after reading the first of these blog updates, one of my golden-hearted uncles reached out to me. He asked me if I'd let him set up a fundraiser for our family. The diagnosis was still new, and we hadn't really seen any big bills yet. And ignorant of some of the aforementioned aftershocks, I politely declined - asserting that because we have pretty good insurance, I thought we'd be okay.

Where I was ignorant, my uncle was informed. Very informed. And very prepared for my pushback. He'd read all of GoFundMe's terms and conditions. He'd written an essay describing our situation. And he had some really solid arguments that left me with no rhetorical room to wiggle my way out of saying anything but, "Well, Chuck ... you're making a lot of sense." I told him I'd talk with Tamara about it and get back to him as soon as we could.

Skipping to the end, the fundraiser was created and is still going. And this is where my words are going to start to fall short. I've been typing. Words have been typed. Do any of these words approach worthiness of the generosity you've all demonstrated? No. Resoundingly, no.

Many of you didn't even need to be prompted with a GoFundMe campaign. You just hopped on Venmo and started sending numbers our way before we'd even thought about a fundraiser. And ... just ... wow.

I want you to understand what that has meant to me and my family. I have developed a big fear in adulthood that has been reinforced in big and small ways over my years of fatherhood. It's a fear of failing to provide for my family. Thanks to you all I have not had to confront that fear. Our family budget over the past month could have, and probably would have, served as a great Halloween decoration without you all. Instead, we're making it. 

A very Happy Thanksgiving to you all. You've done more than you know, and we're more grateful than we can say. Our quiet prayer is that God will bless you for your generosity. I hope that my gratitude is amplified by His reward. I promise to pay it forward when we're able.

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Et tu, Häagen-Dazs?

Well, its Friday again. I was hoping to get to this earlier, but even with a work week that was one day shorter (or maybe because of it being shorter), juggling priorities and being as productive as I need to be is a struggle. I've never been formally diagnosed with ADHD, but man is my undiagnosed ADHD on fire lately. Tamara gets a real kick out of watching me walk out of the office with an empty water bottle, fill it up, leave it on the counter, and walk back into my office without it. Her favorite part is when I walk out of my office again 5 minutes later, muttering under my breath about how I can't believe I keep doing that.

We have more good news this week, though! Her lab results are still really positive. White blood cell count is doing well (just a hair below normal), which is great because I'm still coughing and wheezing like a broken-down Studebaker over here. I don't think I'm contagious or anything. But it still makes me nervous to cough around her.

You may remember that last week we were excited to hear that she might be able to switch from the normal paclitaxel (Taxol) to paclitaxel Abraxane (protein-bound paclitaxel). Well, it was approved by our insurance (Huzzah!) and administered on Monday. From what we were told, and what we observed, the Abraxane comes with very low risk of the kinds of reactions she's felt in prior weeks.

Compared to the normal Taxol, it was a dream. For one (and this is probably the biggest one), Tamara didn't need the Benadryl! She hates the stuff because it causes her muscles to spasm, it makes her drowsy, and it extends the treatment time by about an hour. So, reverse all of that and you start to see why we were excited to ditch it.

Tamara was happier than I've ever seen her in a hospital. You would have thought that she and her nurse were old college friends just based on the peppiness and enthusiasm in her voice. I mean, c'mon ... look at that smiley face.

The only downside that we noticed was that the ice mittens and booties were much less tolerable because this Abraxane stuff doesn't send hot lava through her veins. Her fingers actually got uncomfortably cold and she had to ask for a couple warm blankets.

Returning to the bright side, though, she had 3 infusions that each took about 1/2 hour. So, we were in and out in less than 2 hours (down from about 4 hours). And she only needed the ice for 1/2 hour. In previous weeks, Tamara would get home needing to sleep off the Benadryl. So, if she didn't pass out on the couch, she was off to bed by 6 or 7. This time, we got home right around when the kids would normally get home from school, and by 9:00 she was still awake playing Phase 10 with them!

As the days have passed this week, the chemo symptoms have kicked up a level, as expected. Her hair is almost all gone, which at this point would be nice. Showers are much less enjoyable when you spend the whole time trying to get all the little buzzed hairs off you. We've actually started to wonder what the heck she's going to do in the shower without hair. No need for shampoo or conditioner. No need to shave her legs. Just soap and warm water now. Add that to the list of things nobody tells you about.

Back to the symptoms - by Thursday the weariness and nausea returned, and she started to feel flu-like aches and pains. Thursdays, so far, seem to be the hardest day of the week. She also has started to get sores in her mouth, on her scalp, and on her back. Those are just showing up for the first time this week, and we hope to keep them to a minor nuisance. We bought a humidifier to try and prevent some of the sores, as well as nose bleeds. And she has some creams handy in case anything becomes more than just a nuisance.

Food is starting to lose its savor and even cause some discomfort. The only food that sounded good to her this week was plain mashed potatoes. Today I slapped some burritos together for dinner and the taco sauce that I included prompted a trip to the store for some antacids. She's only ever really had heartburn when she was pregnant, so that was new.

In fact, I almost hesitate to mention such an unspeakable thing, but even ice cream has betrayed her. Tonight, we sat down to watch a show with a pint of Häagen-Dazs and she couldn't eat more than 3 bites of her favorite flavor. She said it tasted like cream cheese soap. Horrifying!

Have you ever burned  your tongue on an premature sip of hot chocolate? You know the metallic, stinging taste/feeling you get on the tip of your tongue? She has that all the time now, all over her tongue and throat. Cancer, and the requisite treatment, takes so much away from a person. But ... ice cream? This means war. And don't you worry. I was there to teach that pint a lesson.

That pretty much sums up the week. If the observed pattern of the past month holds, Tamara should be feeling better Saturday and Sunday. We've been somewhat fortuitous in that regard, because Evelyn's 1st birthday is tomorrow and it would be a real shame if Tamara wasn't well enough to enjoy the obligatory cake smash. We both agree that Evelyn's got a good chance of being a good cake smasher.

As always, thanks for all of your support and generosity. Words can't describe our gratitude, but know that its there.

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Buzzed is Beautiful

This one comes to you a little late, and for that I apologize. While our family calendar has calmed down significantly since the insanity of a couple weeks ago, my calendar and condition has not. Work is pretty busy and we're still trying to figure out how to fit in a home remodel into all this. Both of our energy levels have been pretty low over the past two weeks. Tamara probably lays claim to a better excuse than I do, but I don't think the man cold that has waged war on my sinuses over the past two weeks is too far behind. 

But seriously, its been a rough week and a half for a few reasons. Knowing that the chemo is expected to weaken her immune system makes any close contact with me a risk. So, I've had to keep my distance, and wasn't able to be with her during her latest chemo treatment ... again. She went alone and I joined the oncologist appointment via video call (I wasn't about to parade into a building full of immunocompromised people, sniffling and trumpeting my obnoxious dad sneezes). 

The good news is that Tamara's labs were "beautiful," as the PA described them. Her white blood cell counts had only decreased 0.1 since the week prior - a relief to both of us. We were both pretty encouraged to hear some good news.

Chemo was still annoying - mostly because of the Benadryl. But - more good news - I believe Tamara will be able to switch to a version of Taxol that doesn't require Benadryl. "You may be asking, 'Why didn't we start with that?'" the PA accurately observed. Apparently, they save this less allergenic version for those who have severe reactions ... ya know like near-asphyxiation  and muscle spasms. Here's hoping that the next round will be Benadryl-free.

We've come to find that, as we were warned, Thursday and Friday have been the "bad days" while Tuesday, and Sunday have been the "good days". Last week, Tamara's scalp pain was one of the main complaints during the "bad days", so we got a scalp-specific SuzziPad for her to wear during Monday's Taxol infusion. She said that she was glad to have it because when she would take it off to readjust, she was more aware of the intense heat radiating on her scalp.

Speaking of her scalp, Monday was also the day that she really started to notice her hair falling out. This has been a real source of dread since the beginning. Tamara's hair means a lot to her, maybe even more-so than most women. And that has been the other thing that made this week rough. After a very frustrating shower in which she felt like she couldn't wash her own loose hair off fast enough, she suggested to me that we should just buzz it all of.

Knowing what that meant, I tried to offer some alternatives to going all-in with the buzz. But after trying my suggestion on Tuesday, she decided on Wednesday to just get it over with. There was a lot of crying that day. We have the sweetest kids who are very sensitive to their mother's mood. When she cries, they cry.

Tamara sat down on a chair and we took a "before" photo. Then, each of the kids snipped off a lock of their mom's hair as a keepsake. We told them that when they're all old people, and Mom and Dad are long gone, they might like having a little keepsake. I have it on good authority that it can provide comfort in moments of lonely home-sickness (... mom-sickness?).

Once that was done, I hesitantly started cutting off large locks of her hair. We knew the end result would be a buzz, but for some reason I had a hard time jumping right in the deep end. So, I kind of just cut it short-ish to start. Tamara has always been convinced that she wouldn't be able to pull off short hair. And man what a victory it was for both of us when she looked in the mirror and said "It's not as bad as I thought it would be." Sounds like a backhanded self-compliment, but I promise it was a win. And I felt like her spirit lifted a little bit after that.

We did eventually get to the electric clippers, and that wasn't so bad either. It was done. She'd talked about being brave and doing something crazy with her hair for years, but never was able to muster the gumption to do it. It's not really fair that cancer took the initiative from her. On the bright side, though, she did say that it was a huge relief. The chemo has made her scalp really sensitive, so the sheer weight of her hair tugging on that sensitive scalp was painful. She's not dealing with that anymore, at least.

Yesterday though, we were kind of back to her not feeling like herself. She seems to be searching for ways to regain her sense of self and has even suggested starting a weight-lifting regimen at the gym. We have slightly differing views on the practicality of such a course of action. But I'm trying to stay open minded. On her good days, maybe it would be good to work up a sweat and get some extra oxygen flowing through her system. Who knows?

One of the phrases that has most-often flashed across my consciousness in the past few weeks is "No one ever tells you ..." We weren't prepared for any of this, and I don't expect to be handed a manual on how to navigate your wife's cancer diagnosis. But I'm a verbal processor. I learn things as I type and/or say them.

No one ever tells you how much time you'll spend discussing, second guessing, over-thinking, and wondering about every facet of cancer. I think I can speak for her when I say that we're both finding that focused attention is hard to offer to anyone or anything. We got out of the house for a bit yesterday evening and talked for a while about how each of us is doing.

As for me, after a few minutes of verbal diarrhea, I landed on a comparison that describes my state of being pretty well. I feel like a pregnant woman going through the nesting phase. Weird, right? But it's perfect. I'm completely exhausted, but I also have this drive to do more. I spend more time than you might guess planning my next steps in the remodel so that Tamara has a master bedroom oasis to relax in, and the baby has a non-construction zone to explore. I live in perpetual anxiety that Tamara is doing stuff ... any stuff. I want to get all the stuff done first so that there isn't any more stuff for her to do. (I didn't do a very good job of that this week, but I blame all the antihistamines.) I want all of her surplus energy going towards fighting off the effects the chemo and killing the cancer. It almost feels manic and I can't help but wonder how long it will last before I end up in the fetal position on the floor somewhere.

For her part, she's going through somewhat of an identity crisis. Cancer keeps taking things away from her - things that feed her sense of self-worth - things that ground her and refresh her spirit. So, she's a little lost about how to keep all of that going. Life has a way of challenging all of our assumptions about ourselves. It's a painful process, but there is a part of me that can't wait to see the result of this particular refiner's fire. I told her in our conversation yesterday that, once I really started to get to know her when we were dating, I saw a fettered deity inside of her. (To illustrate what I meant, I showed her the scene from Disney's Hercules when Hades takes over Olympus and Zeus gets buried in hardened lava.) Slowly, over the past 15 years, I've been privileged enough to watch as she's started to catch glimpses of that deity and loosen her restraints. Through some personal, spiritual experiences (usually involving music) The Father has helped her see what a prized daughter she is. Yes, we're all equally prized children of Deity and we all have a similarly impressive potential, but it has been the joy of my married life to watch Tamara shed her shackles.

And I guess that's what hope looks like. None of this is fine. But I hope we're okay in the end, and maybe we'll be just a little bit better for it, too.

Thanks again, to you all. Your generosity and kindness have astounded us regularly. We're blessed to know you.

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