New Plan - Play Hookie for Christmas

We have a plan. And I honestly think it has a good chance of working. You see, last week was truly difficult and we've come to a place where a reprieve seems warranted. So, the plan is to take a break from chemo next week - the week of Christmas. Conveniently, in order to explain why that's necessary and why we think we can get the doctors to agree, I'll need to update you on the past week-and-a-half.

When we last updated you all, my niece was still with us. Since then, Tamara has remarked to me how lovely it was to have her here. She was, indeed, very much missed last week. But I'm also kind of glad she missed it.

Monday Last Week

It started off with a bang, that week. Tamara's chemo treatment was earlier than normal, which is a plus for school transportation purposes. While she's getting her labs done, I'm able to take the kids to school, drop off the baby at a kind volunteer caregiver's house and rush down to the hospital in time to catch the appointment with the oncologist / nurse practitioner / medical assistant. And with the earlier schedule, Tamara is home from the treatment in time to nap with the baby. While they're both napping, I pick up the kids from school and try to keep the noise levels below "monster truck rally" levels until one or both of them wakes up. I've found that the week goes a lot better if Tamara gets a lot of rest the day of the chemo treatment.

On that particular Monday, however, resting for the afternoon and evening wasn't in the cards. We had two elementary school concerts to attend - band and orchestra.

Side note: I've come to the conclusion that the learning curve for brass instruments is much steeper than that of string instruments. There is a special place in heaven reserved for elementary school band teachers.

So, from 5pm - 7:30pm Tamara braved the chorus of sniffs, sneezes, and coughs while seated in the luxurious fold-up tables of an elementary school cafeteria. She really loves these kids. One of her early concerns was that she was going to miss things like concerts and games because of chemo. So far, she hasn't missed a note played or goal scored, and we're all grateful.

That just about concludes the positivity from that week, though I hope to return to it at some point here. Sometime between Tuesday and Friday of last week, Tamara was promoted to the next rank in the chemo patient army. Yes, that is a longer period of pain, nausea, and fatigue than she's experienced in weeks past, and the cause of it goes back to last week's lab results.

Lab Results

In short, Tamara's system is showing signs of depletion. Most of the data points on the print-out had the letter "L" next to them - indicating that her levels were low. Most-concerning were the white blood cell counts and the neutrophils, which indicate the strength of her immune system. Monday's lab results showed that if she were to become infected with some kind of bug or virus, her system wouldn't be able to fend it off.

When that happens, the doctors put you on another regimen of injections - these intended to stimulate white blood cell production in the bone marrow. As the nurse practitioner was explaining this, Tamara's shoulders sank and her eyes welled up with tears. She'd seen this coming and was hoping to avoid it. "I've heard those shots will cause more bone pain, right?" she asked.

I don't know how many of you have sat and watched an over-burdened, fatigued loved-one hear more bad news. It's not a club membership to be desired. For crying out loud, she's been through enough. Yes, these new shots will cause more pain. And until the insurance approves it, it will have to be administered at the infusion center 3 times per week. More pain. More hassle. Ugh.

Tuesday - Thursday

There's not a lot of detail that I remembered from the day-to-day of Tuesday, Wednesday and Thursday. Good thing Tamara is here to fill in some of the gaps for me. She felt a lot of the same aches, pains, nausea and fatigue that she has in weeks previous. This week, however, she wanted to try and push through it to get some things done and feel productive. Making pumpkin bread, catching up on laundry, cleaning our bedroom, making sandwich bread - all things on her list for those few days. It was hard, but she clenched her fist and got a lot done. 

Doing all of this did take it's toll. Walking up the stairs is a cardio workout that leaves her a bit winded. So, all of those things I mentioned above were done with no small effort. And when she finished a task, she rested. We try to have her resting when the baby naps, so most days I stepped away from work to pick up the kids from school.

Amongst all of this, Tamara was making daily trips down to the infusion center for the shots. When you're already exhausted, waiting for an hour to get a shot that takes 10 seconds to administer is annoying. And I would say that we're looking forward to getting the drug approved by insurance ... but as you'll see next, we kind of hate it.

Thursday evening rolled around. By that point, she had received all three of the white blood cell stimulus injections. I was sitting in a remote company Christmas party, wearing an ugly sweater. All of the kids were out of the house playing somewhere in our neighborhood. So, it was just Tamara and the baby in the house with me.

Bone Pain

As my co-workers were making jokes about the digital gingerbread houses they'd created as part of a group activity, I became aware of Tamara's voice in the other room chanting something over-and-over.

"I'm okay, I'm okay, I'm okay, I'm okay ..."

I can't be sure if she'd been repeating this phrase for 1 or 15 minutes, but I can be sure that I didn't hear the first repetitions. I quickly muted my camera and microphone and ran out the door to see Tamara on her knees, doubled over on the couch, still chanting. Evelyn was standing right next to her - very unsure about what she was seeing from Momma.

I picked up the baby and started to ask Tamara where it hurt. No response. Looking back, I think she was probably in a kind of shock because she didn't seem to hear any of the questions I was asking. After a minute or two of me trying to triage the situation, one of the kids walked in from playing outside. I asked them to hold the baby and play with her in the other room while I tried to help Mom.

We had kind of seen this coming, because of the injections, but I didn't think it would be this debilitating. Following the example I had seen of my sisters-in-law over Thanksgiving weekend, I started to squeeze her limbs and rub her back while I continued to ask questions. Massaging the lower back and shoulders seemed to emit the most positive response, so I doubled down with those two. After about 5 minutes of massaging, her breathing slowed, the chanting slowed, and she was able to answer me.

Most of the pain, she told me, was concentrated in her lower body and kidneys. More kids came home and I gave them short descriptions of the situation and even shorter instructions to help keep the baby busy. Bless our kids. They're good about sensing a "just obey" situation, and they did a great job keeping themselves and the baby busy.

Eventually ... after I'm not sure how long, the pain subsided and Tamara was exhausted. We got her up to bed and she rested for the remainder of the evening. I went downstairs and turned on a Christmas movie while the kids made lunches, took turns showering, and got ready for bed. Once they were all settled for the night, Tamara woke up to remind me that Jaydon needed a bag of skittles for his science project the next day. So, off to the store I went.

While I was there, I wanted to get some eggnog and hazelnut coffee creamer (Elianna's favorite) for hot chocolate. My brain was in execution mode, so I wasn't thinking introspectively or trying to process any feelings. Even so, as I was making my way to the dairy aisle, with dairy on my mind, my eyes started to well up with tears.

Some sort of pressure valve opened and I started to have a hard time composing myself ... in the supermarket. This was new for me. Normally, when I become aware that I'm in need of some emoting, I have to seek it out by listening to a song or watching a movie. I've intentionally curated a collection of songs and movie clips that I've come to rely on over the past few months for catharsis. I can say with confidence that the dairy aisle has never been a source of catharsis for me, so that was strange.

Friday & Saturday - Birthday & Injury

After all of that, we tried to make Friday a rest day for Tamara. She was feeling a little better than what she'd experience earlier in the week, but still had to decline an offer to see a movie with me. An early bedtime was much more attractive to her, so I decided to take the three older kids to see the new LOTR movie.

We left around 8:30 with the baby asleep and the two younger boys ready to follow the baby's example. It was a great movie, and we enjoyed the night out. Unfortunately, the two younger boys did not get the "let Mom sleep" memo. They decided to throw a little party in their bedroom and Tamara didn't have the energy to be the regulator. They kept her up until about 11:30 when we got home. Needless to say, they got read the riot act on Saturday morning. By the end of Saturday, I think (hope?) they had concluded that their party was not worth the extra chores.

Speaking of Saturday, my dad came down to Mesa that day to hang out with us. It was his birthday, but he still offered to help us with some house projects. And I'm not just saying this, he legitimately seems to enjoy working on projects with his kids. Tamara was feeling relatively good that day, so she also decided to tackle some projects. It was a good, productive day - despite the fact that I had a hard time focusing on anything. I'm sure my Dad got a kick out of watching me rehearse my next steps as I stared at the tools in my hands. "What was I doing again? Oh yeah ... first, put the hammer away, then throw the box away, then grab the wire saw from the garage on the way back."

At the end of the day, we had run some cat6 cable, rewired a few lights, installed some backpack hooks, and we had made solid progress on our Christmas Tepee (see image at the top). The kids wanted a teepee this year instead of a tree. It's still not done. Also, Evelyn keeps pulling down the window lights behind the tree. Efforts are being made.

It wasn't all work on Dad's birthday though. Tamara had baked a raspberry key lime cheesecake for him on Friday night. On Saturday night, we put some candles in the cheesecake and sang happy birthday. Happy birthday, Dad. I'm glad that you chose to spend it with us. Side note: If you haven't tried one of Tamara's cheesecakes, you're missing out.

That same night, my brother Jason came over with his wife Edythe to visit for a bit. We chatted for a while and, as usual, we showed them some funny videos we'd found on the interwebs. One of our favorites lately is this lady named Molly the Mom. She calls herself "Bargain Amy Adams" and if you've seen her, you get it. She and her husband are always trying to recreate crazy couples exercises that were originally done by VERY fit people. No matter how successful her recreation, she always ends the videos by saying "Crushed it!" and doing a little heel click thing.

Why am I telling you all about some random internet influencer? Well, about 10 seconds after Jason and Edythe had left - no exaggeration ... we had just closed the door ... Tamara attempted one of those "Bargain Amy Adams'" heel clicks. Let's just say that she was laughing as she did the heel click, but she was not laughing when her calf muscle exploded.

For a few weeks now, her left calf muscle has been bugging her. She felt like she pulled it last week, but it seemed to get better a couple days later. This time was worse. She could barely put any pressure on that foot, let alone walk around. Honestly, we feared the worst. I was expecting to have to take a trip to the urgent care. She did limp for a few days, and she still can't run or jog (not that she has the wind to do so anyway). But she's now able to walk normally and such.

By Sunday, we were all exhausted, sore, and lacking the mental capacity to function as we normally would. Church was not on the table that day, and we were very grateful for the abundance of left-overs in our fridge.

The Plan - Congrats if You Made it This Far

So, how about this week? Now that I'm getting around to what happened on Monday the 16th, I'm finally getting to the plan I referenced at the start. I showed up a couple minutes late to the Monday morning appointment with the oncologist / nurse practitioner (Evelyn's fault ... she didn't want to wake up).

When I arrived, Tamara caught me up on what they'd discussed and we got some good news. Tamara's white blood cell count improved significantly. The shots worked! Honestly, it was a huge relief that the pain wasn't for nothing. Feeling like I was caught up on the discussion, I made sure to emphasize that Tamara's reaction to the new shots was intense. Hearing my description, the nurse practitioner suggested that we hold off on the shots this week, and we were happy to agree.

Two weeks ago, after seeing how downtrodden Tamara seemed, this NP suggested that could possibly forego a week of chemo. Not wanting to push the conclusion of the treatment plan back by a week, Tamara declined the offer.

Our hope / plan now is that, having taken a break from the new shots, Tamara's numbers will once again be low enough to justify foregoing chemo for the week of Christmas. Is it weird that I'm hoping her numbers are low? Yes, maybe. I just think she has more-than-earned a break from this confounded routine. She's so exhausted. Today (Wednesday) was another one of those chemo-induced bad days, where she just wanted to sleep, and to have her arms squeezed and back rubbed.

Wrap-Up

Morale is a little low with troops, to be honest. We probably need to check in with the kids and talk through anything they're feeling. They seem to be handling it well, but I know that I'm not, so maybe they can help me. One week with no chemo sounds like a dream at this point. We're coming to the end of this always-on drudgery (3 weeks left!), but its not getting easier.

And apparently, the worst is yet to come. This first 3 months of chemo is administered weekly because it can be tolerated weekly. The next 3 month regimen can't be done weekly because it's significantly more intense. It can only be tolerated once every 3 weeks. And the medication they give for white blood cell production is also more intense.

So, I guess I'm saying I'm scared. We're scared. We're probably in for a few more episodes like the one she went through last Thursday evening. As I'm writing, more tears are welling up in my eyes because ... well ... you know why. This sucks. Cancer sucks. There's only so much I can do to help. I wish I could do more. And I know there are so many of you out there that feel the same way.

Your support has intensified right alongside Tamara's pain and discomfort. You're keeping us going and my heart breaks to think about where we'd be without you. We have an awesome tribe and even though my statements of gratitude may sound like platitudes at this point, they're actually more sincere now than they've ever been.

On Thursday night, after Tamara's encounter with debilitating pain, I decided to watch "Its a Wonderful Life". It's a movie that I never skip during the Christmas season. At the end of that movie, the entire community rallies around George in an unbelievable show of love and support. As they all sang Auld Lang Syne, I was overcome. I can't help but wonder if a few guardian angels are getting their wings for the work they've done to inspire all the generosity which we've benefitted from. Merry Christmas! God loves us, and you all are my proof.

Read the next update

Read the previous update

Potion of Despair ... with Friends!

Hello everyone! I took a week off from writing an update - mostly because there was no time. But also, it was Thanksgiving weekend, which we spent with my dad, and most of my siblings, nieces and nephews. It was really great to see everybody, and it was really hard at the same time.

Before I get into that, here's the update on Tamara's treatments and condition. The past two weeks were treatments 6 and 7 of 12 (or maybe 13?). We're at least halfway through with these weekly doses and the chickens are coming home to roost. Tamara's anemia has not improved - worsened actually. The labs she did this week almost triggered a blood transfusion because her body isn't producing what it needs.

My guess is that she'll need a transfusion in the next week or two. That's a sentence I never thought I'd have to write about my 30-something wife.

The treatments themselves are becoming more difficult as well. In the first couple treatments, the chemo drugs would heat up her system so much that she hardly even noticed the ice mittens and booties. With her anemia and circulation being so poor lately, the cold has become really uncomfortable. So, my job is to encourage her to tolerate it as long as she can. Neuropathy is no fun, and the ice can help her avoid it.

Have you ever seen Harry Potter and the Half-Blood Prince? The part where Harry has to force Dumbledor to drink that "Potion of Despair"? Asking somebody to keep inflicting pain and discomfort on themselves, promising that it will be over soon ... Reassuring a person you love that this will all be worth it, when you're not 100% sure yourself - that's a little bit like what chemo is becoming. In fact, I might just start calling chemo the "Potion of Despair."

So, things are getting harder. Her "down-for-the-count" periods are getting longer and less predictable. The nausea has made more frequent appearances, and become more intense. The nose bleeds are also getting worse. It's just hard. And we don't really know how well it's working. She has another 5 or 6 treatments to endure before they'll do another set of scans to see what progress we've made. It's a tough mental battle to fight every week when something as basic as "is this working" is shrouded in mystery.

Anyway, that's how she's doing in a general sense. Returning to what we did for Thanksgiving, we drove up to the Arizona mountains where my Dad lives.

We've heard from a few sources that cancer hates oxygen, and you could say I'm a believer now. When you're not acclimated to elevation (or maybe even if you are), going up to the mountains where the air is thinner is probably counter-productive for a cancer patient.

Observing Tamara's condition before we left almost forced us to stay home. But we did end up making the 90 minute trip on Wednesday afternoon. And unfortunately, her condition only got worse on Thanksgiving Day itself. Last week marked the real beginning of the bone pain we've been warned about, and the dry mountain air did a number on her. She developed small rashes and sores on her face, arms, and hands that are only just starting to heal now that we've been back in a place with a humidifier for a few days. The rashes on her elbows have been particularly annoying. It was pretty rough.

But we were afforded a luxury that made the experience bearable even with the pain and discomfort. My dad secured us a separate little hide-away that was walking distance from the main gathering. That hide-away was used when Tamara needed to rest and be away from 30 excited, screaming nieces and nephews, who seemed to have the time of their lives. It was also really nice to have a quiet spot for Evelyn to nap. (I got my steps in carrying the baby back and forth, so it was good for me.)

Without that separate space, we wouldn't have made it more than a day. And even with it, Tamara wasn't able to rest much. Weird humming machine noises, concerns about little furry visitors, a baby who didn't sleep like one - all those things contributed to a pretty restless few days. I wondered several times if we should just pack up and go home, but Tamara was pretty insistent that we needed to be there.

When she was with the group, you couldn't really tell that anything was wrong with her. If not for the pained look in her eyes that she was almost able to hide, you wouldn't have looked at her and thought, "She should be resting." I was very conflicted the whole time; reveling in the time I got with my siblings while simultaneously knowing how she was really feeling. I was brought to tears several times for several different reasons. And one of those times it was a full-on meltdown. 

There was a point in which, in the middle of a group conversation about my mom, I looked at a family picture and realized that Evelyn (our youngest) will never know her Grandma Ray in this life. I haven't ugly-cried like that since the funeral.

The past two years have been very ... dense for the Delwyn and Shelley Rays. We've lived more than two years-worth of life in that time and we have a lot to unpack. That episode showed me a glimpse of just how much is simmering beneath my surface-level facade. When this is all over and Tamara is cancer-free, buckle up. Jared's gonna be a mess.

Even so, it was a sweet few days that we were glad to have. We celebrated my dad's 70th birthday, and Tyler's 40-something birthday. We saw tons of elk roaming the neighborhood - probably enjoying some refuge from hunting season. There was a taffy pull, place-mat coloring, a karaoke party, lots of cooking, and a whole bunch of other fun stuff. Tamara was resting during a lot of that, but made a point to be there for as much as she could. And we definitely weren't short on people wanting to help me with the baby. Again, it was a good time.

We also spent some time going through my mom's things - selecting a few to take home. In fact, it was during this that I was reminded of how nice it is to have a tribe. Tamara and I were going through Mom's moo-moos and vacation hats when a couple of my sisters-in-law walked in to join us. They asked how Tamara was doing, and she gave them the best smile she could muster. Sensing that all was not well, they persisted until Tamara told them that she was having some bone aches. Before she even finished telling them, they were sitting on the ground next to her testing some theoretical remedies.

They started to just squeeze her arms up and down from shoulder to forearm. And she felt immediate, profound relief. The three of them sat there for a good 20 or 30 minutes. Nobody teaches you these things, and it seems so simple in hindsight, but I thought it was brilliant. Hearing what the pain was like and where it was located was enough. Empathy, compassion, and intuition did the rest. The only remedy I had been able to conjure up prior to this was sympathy. I'm so grateful for the caring, nurturing instincts of the women in my family. I get choked up just thinking about it.

But wait! There's more. Our 20-something niece Mady decided she didn't want to drive back to Idaho with her family right away. She's been staying with us since we all went our separate ways the Saturday after Thanksgiving, and she's been an absolute treasure to have. She has probably played more card games with our kids in the past 4 days than she had played in the whole year prior. Sidebar: What is it about cousin gatherings that gets kids fired up to learn how to shuffle cards? All of a sudden, the social currency in our home revolves around who can shuffle and do the "bridge" thing.

But seriously, I've had one of my most-productive weeks at work because we've had another adult in the house. Mady went with Tamara to her chemo treatment this week, which gave me back another 3-4 hours of productive time when the baby is napping. Seeing this, Tamara suggested that I should just let her do her chemo treatments alone every time. She's funny, right? No way. There's something about the image of her struggling to get her ice mittens on by herself that fills me with "nope". Chemo is one of those things nobody should have to do alone. Granted, there's not a lot to do beyond helping Tamara with the ice accessories. You mostly just sit there, so, it's a good thing that Mady crochets. 

I think that's about it. Please keep us in your prayers and good vibe deliveries. Your support has moved mountains for us and we love you all. And to continue the theme of last week - thank you!

Read the next update

Read the previous update

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.

Read the next update

Read the previous update

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.

Read the next update

Read the previous update

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.

Read the next update

Read the previous Update

On the Road to Routine?

We're learning a lot about cancer through this process, and most of it slips through the cracks in my short term memory too quickly to make it into these updates. But when to provide another update is one learning that I've had some help remembering every week. When we start to feel a groundswell of interest (usually about half-a-dozen texts or calls) from people who love and care about Tamara, its time to start tapping keys.

The plan for this past week was anything but simple. Outpatient surgery (port installation), church-sponsored fall festival, overnight work trip, twin tween birthday party, soccer practice, school pickup, bathroom remodeling, chemotherapy treatment #2 - we had it all. And I'm happy to report that we landed the metaphorical plane with very few loose rivets.

• The port installation was a success even though, to paraphrase Tolkien's Gollum, "we hates it." Tamara's recovery has been on par with her ridiculous, stubborn standard. I caught her mowing the lawn with one hand on Saturday before the birthday party. Ringing in my ears were the words I remembered our oncologist saying; that chemo patients don't do well in the heat and direct sunlight. I haven't been so mad at a person in a long time, and she hasn't felt so inhibited in a long time. A lot of her self-worth is tied up in how useful she can be to those she loves. Cancer is already taking some of that utility from her, and even more dreadful - she is now partly dependent on others. She worked in a surgery center for a time, so she's seen lots of surgeries from the nurse's perspective. After the port was installed, she said, "I hate being on this side of the surgery." That sentiment extends beyond just the surgery. With that in mind, when we asked for clarification in our appointment yesterday, the nurse practitioner said that Tamara should be fine to do yard work as long as its not in the middle of the heat of the day. So, like I said, we're both learning. While she's learning to take a step back from her normal activity level, I'm learning to trust that Tamara knows her limits and I shouldn't be so dogmatic ... even though my limits are much more modest than hers.
• The birthday party went really well. 14 tween boys showed up and much merriment was had. When kids started showing up, I was on the front lawn to greet them - not because I'm a good host. No, I was on the front lawn because I was trying to finish scalping my lawn (the uninitiated non-Arizonans may need to look up what "scalping your lawn" means). So, most every kid and parent got to witness me in all my sweaty glory - dirt-stained teeth and all - waving at them with all the dignity of Gomer Pyle and Forest Gump. Once the lawn was finished, I was able to fully engage in the party, and the Gang Beasts (video game) tournament was on. To the victor went the spoils - a goat trophy (pictured below). This was followed by one of the most impressive gift-giving sessions I've ever witnessed. If you parents of my kids' friends are out there - holy cow. Then, we finished it off with a game of light-up capture the flag. It was a big hit, but it took us a minute to nail down the rules. And even then the green team only won because the blue team lost more players as their parents arrived to take them home. Chaos? Yes. Fun? Also, yes.
• 7-10 individuals were recruited to help make Thursday and Friday possible. I had to leave home overnight for work and the support we needed to make that happen came willingly and painlessly. Without you, either I would have had to skip out on my co-workers, or the kids would have been walking home from school, missing out on fun church activities, and watching their mom struggle in pain. You know who you are, and I can't thank you enough.
• Getting our home ready for the Thursday-Friday helpers came down to the wire. We recently installed new flooring in our home's main level, as part of our Never-Ending Home Renovation. That involved me removing the toilet in the half bath. I had planned on installing a new one on Saturday morning in preparation for the twin tween's party. But around 6 or 7pm on Wednesday, Tamara reminded me that people were planning on being at our house to help us on Thursday and Friday. It would be nice if they had a place to powder their noses without braving the kids' bathroom upstairs. And at about 12:30am, wouldn't you know it - I managed to get the room in working order.

Now, about yesterday's chemo treatment. Thankfully, it was much more boring that last week. There are 3 main medications being administered (now via a shiny new central port): Benadryl, Taxol and Carboplatin. You may remember that last week, she reacted to the Benadryl with muscle spasms. Because of this, they decided to do an IV piggyback. Honestly, I don't fully understand what that means, but from what I do understand it means the dose was diluted and administered slowly. Well, she still reacted with spasms but they weren't as intense. And because she saw them coming, she was able to avoid most of it with concentration and breathing. Still very annoying and agitating, but manageable.

For the most part, that was the end of the drama. She did feel the Taxol trying to wreak havoc, but because it didn't close off her airway this time, she was able to observe more of what that crap does to a person. When the nurse administers the Taxol, Tamara puts on her SuzziPads (i.e. ice mittens and booties). The idea is to reduce blood flow to the fingers and toes so that the Taxol doesn't destroy or injure the nerve endings.

Tamara is known in our home for her ice-cold hands and feet. Much to my dismay, my warm ribs are often the default defroster for her extremities. So, imagine my shock when she took her hands out of the ice mittens and touched my arm with warm fingers. I say again ... warm fingers. This. Does. Not. Happen. If Tamara even thinks about ice, her fingers release whatever traces of heat they were clinging to. For her hands and feet to be in contact with ice packs for 2 hours and remain warm ought to tell you how crazy-dangerous these drugs are.

Anyways, when we got home, she pretty much went straight to bed. Only the baby had an earlier bed-time than Tamara today. My hope (there's always hope, right?) is that with the port install complete, with the insanity-that-is-always-our-October complete, we can begin to fall into some sort of routine. We have yet to see the full wrath of chemotherapy, so my hope could very well be very naive. Even so, 2 treatments down - about 17 left to go!

A couple post-scripts:

1. I get asked a lot about her treatment plan, so I'll clarify here. Things can always change, but the plan right now is to do 3 months of weekly chemotherapy treatments, followed by 3 months of treatments once every 3 weeks. Our goal is pathologic complete remission with chemo. In other words, we want the chemo to kill the cancer to the point where its untraceable. Achieving this outcome before surgery significantly increases the 5-year survivability rate for Tamara's grade and stage of cancer. After those 6 months of chemotherapy, we're looking at a bilateral mastectomy and a hysterectomy. Each of those will come with grueling recoveries. So, 2025 is pretty much booked for us. Neither of us is happy with our options at this point. But in the time it would take us to research alternative treatments, we'd likely be looking at Stage 4. We feel lucky that we caught it at prognostic Stage 3. We won't get into what the prognosis looks like for Stage 4, because its not hopeful.

2. I've heard from a few people that they've been impressed with how we're handling this whole thing. I can't help but think that my light-hearted tone in these updates is responsible for that. Most of you haven't really had the chance to see us in our natural habitat, so the blogs are all you know. But I believe that in traumatic times, an accurate accounting of reality is more useful than hollow positivity. Some of my positivity is genuine, but some of the positivity I'm tempted to project would be hollow. It's so tempting to let you all believe that we're just smiling our way through this. But we're not. My writing style is more of a habit than an indication of my mental and emotional state. Yes, its true that Tamara and I have been able to avoid turning on each other. We make a pretty solid team, and I think our experience with my mother's cancer has helped us gain some perspective that regulates our emotions and behavior toward each other. We're also trying to retain a sense of normalcy for our kids. They've proven resilient up to this point, and they'll likely need to endure more than we wish.

But in our quiet moments, when the kids are asleep, our worlds are spinning. We're in mourning of the year(s) we thought we were going to have and we're terrified of what's to come. We are doing our best to approach this thing with faith and hope - and there is much reason to hope. Tamara has a good prognosis. Were it not so, I'm not sure I'd be a functional human. But what we're in for over the next year+ fills our cushy, suburban hearts with dread and longing. It's only in acknowledging and confronting that reality that I can begin to comprehend how much strength we'll need to muster for the long haul.

And that is the struggle, which unfortunately so many of you are familiar with, that makes all of your outreach so meaningful. Thank you. We do try to respond in a timely manner with words that convey what you mean to us. But even if we don't, please know that without you, we'd have only ourselves to look to for reminders that Christ's pure love can be found and felt, even in hardship. Left to our own devices, I'm not sure we'd be able to keep that memory alive. We love you, we're grateful to know you, and this update has gone on long enough.

Read the next update

Read the previous update

So it begins

Note: after I wrote what I remembered, Tamara added some good detail below.  

The last update I wrote was only 4 days ago - that's a little crazy. Between this current crisis and a few others we've had to deal with in the past, we're learning that medical issues cause time paradoxes. Time both slows down and speeds up. You feel like you're at the hospital for a month, but you simultaneously can't believe that "we've already been here for 4 hours."

Anyways, Tamara made it through 9 of her 10 appointments (referenced in the last update), and so did the rest of us thanks to some very generous people who have cared for the baby, helped with school transportation, and brought us meals. Thank you so very much. I can't tell you what a load off it is when "doing the dishes" is synonymous with "throwing the pan away."

A few small details that made a big impact on us:

• Neither of Tamara's bone scans resulted in her "glowing" as our oncologist warned. The radiologist was kind of perplexed that we'd been told that she'd need to isolate after the scan. "You're close to me ... and you're going to be close to a lot of people on your way out of the building." In short, everybody was fine and Tamara was able to be very present for Elianna's birthday.
• The twins' birthday party has been moved such that I don't need to choose between it and a work trip. I'll be there the whole day to help set up, run the show, and take down.
• I was also able to move some things around at work that allowed me to be with Tamara at the oncology appointment today and make sure she got settled in with her chemo treatment (though I now regret that I didn't stay for the whole infusion ... foreshadowing ...).

Those kinds of details made life a little easier. We also were able to enjoy some of the test results we got back. Blood work, CT scans, bone scans - they all came back clean and normal. There is nothing new in those reports that our oncologist is remotely concerned about. 

Along that same line, Dr. Dumlao also updated us on the lack of clarity we've been feeling about the lymph node biopsy. Good news - they were able to confirm that there was lymphoid tissue in the biopsy and that the "clean" result is almost-surely correct (can't every be 100% sure about these things). The only way to be more confident in those test results is to remove them surgically, which is already planned after Tamara is done with chemo.

Bottom line - we're as certain as we can be that we remain in Stage 2/3 and that the mass is still isolated to the breast. [cautious sigh of relief]

So, today was Tamara's first chemo therapy treatment. We've had so many people reach out to provide helpful advice, so Tamara was very prepared - giant tote bag full of blankets, pillows, mittens - you name it. We didn't have to wait long to be brought back into the infusion center where they used an ultrasound machine to make sure the nurse didn't have to dig around in Tamara's arm with a needle to find a good vein.

I made sure they brought her a good lunch, and opened the bag of chips and the cookies in case she couldn't use both hands. She had a blanket they had pulled from the warmer. She looked pretty settled in, though still anxious. The baby needed to be collected from the kind volunteer, and I needed to squeeze in a couple hours of work before the kids got home. So, I left.

This chemo thing is a strange process. It feels wrong to voluntarily allow poison to be injected into your wife's blood stream. Yes, it feels more wrong to let cancer accomplish it's objective, but even so it's surreal to watch it actually happen. We're powerless to stop the chemo process because we have no other means of fighting this thing. Mortality comes with a host of ailments, but this one ranks pretty high on the list of "things that could drive you insane before it kills you".

I say all of that because within 30 minutes of me leaving, Tamara started sending me updates like "Apparently, I'm having a reaction to the Benadryl." Why Benadryl, you ask? Well, that particular drug was meant to stifle the body's natural response to the chemo drugs. They give it in fairly high doses prior to administering the actual chemo drugs because of how toxic they are. After noting some spasms that the high dose of Benadryl was causing, they gave her some Ativan to calm the nerves and stop the twitching.

Then, even having been administered the pre-meds, she still had an allergic reaction to the first of the two chemo drugs. She started swelling up, her airway started to close, and she started seeing blurry stars. Tamara did keep sending me updates, so I knew she was okay, but ... I don't think I'll be leaving her alone again. Very scary for her, and for me at home with a sleeping baby upstairs and spreadsheets across my monitors.

The nurse, however, indicated that this is very normal - again, very alarming. After hearing about all of this, I wasn't going to just chill and wait for her to come home. So, I headed back to the hospital to pick up my toxic bride as soon as I was able. The original plan was to have Tamara drive herself back, but all the extra stuff they had to give her to calm the reactions made that impossible. 

When I got there, she had just woken up (the allergy meds made her drowsy) and the nurse filled me in on a very eventful afternoon. Once the last of the 2nd chemo drug was infused we headed home. After passing into the dream world for a couple hours, and after a few failed attempts, Tamara did eventually recover her faculties and decided she needed to make some cheesecakes for the boys' birthdays. (This lady ... honestly.) She also got a head start on thank-you cookies for all those who have helped. All you can do is chuckle, sometimes.

Next up: installing the central port under her right clavicle so that we don't' have to mess with IVs anymore. I'm very curious to see what the recovery looks like for that. In the first few days, cold press should help. The oncologist also said that it may take a few weeks for Tamara to fully accept the presence of her new little buddy. Until then, there is likely to be accidental movements that are a little painful.

With any luck, after the port install, we'll be able to establish some semblance of routine. But who am I kidding. This is cancer. Routine is an probably a mirage, right?

Tamara's Account:

This is all very hard, and overwhelming. Lots of information and decisions that are supposed to be made when you can barely process the last things that were said. What follows are some details that I remember that Jared didn't.

Dr. Dumlao told us that these chemo meds will put me into temporary menopause..( YAY hot flashes) but I am getting my uterus and ovaries removed anyways, so it is just a head start on that. It will be nice to not have to worry about a period while doing chemo treatments. 

I have been very anxious about starting treatment. I have cried in the kitchen with Jared and said things like "I don't want to do this, but know that I have to. I know this isn't going to kill me but I still have to be stripped of so much; to have feel the depths of hell and that is soo hard to think about." 

We decided not to do the scalp cooling, which was a relief to finally have a decision on that. Jared knew that even if half my hair was saved I would still be extremely self conscious of the thin, patchy hair and the potentially-awkward regrowth pattern. He wasn't wrong - that would be very difficult for me. But I am extremely sad/terrified to lose all my hair ... it has been the one physical thing about myself I have actually liked. But c'est la vie. 

Blood work today was difficult. The tech really wanted to get my right side, since my left side is all bruised up from the IV they gave me for the bone scan and CT scan. But my right side is harder and the vein kept moving around while she tried to poke it. (I already see and feel a bruise forming there as well). So when they put the IV in for the Chemo meds today, they did the right side again but a little lower with the ultrasound to guide them. (It still took them a little bit to find it and dig around to hit the vein just right...I hate getting IV's.)

As he said, Jared left after I was mostly settled and they were about to give me my pre-med drugs. The high dose of Benadryl made me really tired really quickly. So, I would dose off but immediately be woken up with muscles spasms in my arms that would clench my hands into fists. It was very annoying. They had already administered all of the dose so I just had to wait it out, they said...but then it kept happening for a while. So, she ordered Ativan to calm down the spasms. 

Shortly after the finishing the Benadryl amd pembro, they flush the IV (this gives me a weird metallic taste in my mouth every time). She hung the first of the Chemo drugs...the dreaded Taxol...this is the drug that can kill off the nerves in your extremities. So, I have to have my hands and feet in ice gloves and slippers to avoid neuropathy for the whole time until the bag is finished being administered. Within a few minutes of this med starting I felt a hot, heavy weight in my stomach that made me think I may throw up. But before I could let the nurse know that, the sensation quicky traveled up my face, swelled up my lips and started closing my airway off. I started having a very hard time breathing. With significant effort, I was able to get utter "Something is not right" and then about 5 or 6 nurses rushed over - one of them equipped with an epi pen ready to be used. They immediately turned off the Taxol and put me on oxygen. I was pale in color but after the oxygen was on for a minute or two I was able to breathe better and the swelling in my lips went down. The stomach pain lingered the longest. They then prescribed me another antihistamine to help with the reaction of Taxol, and decided to administer the Taxol over 2 hours instead of 1 hour. This helped immensely and I was able to get through it. 

It was crazy how fast things changed for me though...I did not expect those reactions. I guess they can me very common though. 

I also want to say how grateful I am to all of you for showing love and kindness for Jared, my kids, and to me. It means a lot! It brings me to tears to think about all of your kindness, and for those that are close to me on the other side of the veil. 

Now, 1 down...18 more treatments to go!

Read the next update

Read the previous update

Zero Residual Cranial Bandwidth

Team Beat Cancer ... Assemble!

 

Whenever people in my industry start a new job, the first few days of employment are always met with rhetorical questions like, "Drinking from the firehose, eh?" The analogy paints a vivid picture of violent overwhelm that probably is better suited to describe a person's first appointment with an oncologist.

On Tuesday, we met Dr. Liu-Dumlao for the first time. If it was just her, I think we would have been okay, but there were times that we felt like one of the sharks on Shark Tank. We sat in our chairs in the small examination room for about 3 hours and welcomed half-a-dozen different people through the door to give us their well-rehearsed spiel about their special part in the cancer treatment process.

For a few of those contestants, we wish we could have said "... and for that reason, I'm out." Just like the sharks.

By the end of it, we left with enough literature to fill a college course - that's not an exaggeration - and zero cranial bandwidth remaining.

Having said all of that, it seems like the crabby scheduling nurses aren't in the picture anymore. After we met with the surgical oncologist last week, we left with a list of scheduled scans and procedures. All of those appointments have now been moved to earlier dates - most of them tomorrow or Friday. Dr. Dumlao put her team of minions to the task of performing some scheduling miracles for us, and they all came through. Here's the list of all but one of the appointments we have coming up in the next week:

• Echo exam
• Psycho therapy
• Bone scan 1
• Bone scan 2
• CT scan
• Blood work
• Oncology appointment #2
• Central port
• Wig fitting (Tamara scheduled this one)

We've felt some intense anxiety about how fast we've seen the tumor grow with just the naked eye. After the mammogram it didn't seem like anybody was in a hurry. Now, with the biopsy results in front of the right people, it seems like everybody is in a hurry. On the one hand, its a little scary that everybody senses the urgency. On the other hand, its a relief that everybody else seems to get it now - we don't have time to sit around.

Prior to the appointment on Tuesday, we were hoping to get some clarity on why chemotherapy needs to come before surgery. Seemed to us that if the cancer hadn't spread to the lymph nodes, chemo would be unnecessary. Needless to say, we are really not looking forward to 6 months of chemo, and if at all possible, we wanted to avoid it.

Dr. No shot that hope down pretty quickly (jk, Dr. Dumlao is great ... but chemo is going to suck). There were some tears shed once we felt the finality of the recommendation and the inevitability of chemo. Nobody wants chemo and nobody wants to see their loved one go through it. The doctor said that the goal is to see complete pathological remission before surgery. I'm honestly not 100% on why that needs to be the process in Tamara's case, but the doctor is adamant that it's the best treatment plan available for triple-negative, BRCA+, grade 3, stage 3 breast cancer.

"Triple-negative breast cancer" is no joke. It doesn't respond to hormone treatment and, in Tamara's case, grows scary-fast. At the time of the mammogram, the tumor was 2.4" (6 cm) in diameter. that was 3 weeks after Tamara even noticed the lump. For reference, a tennis ball is about 2.5" in diameter. Knowing that it has grown since then is just crazy.

Tamara, at times, will do a self-check to gauge the size and is always shocked by what she's feeling. She then looks to me for validation, asking me to feel it and gauge for myself. Since the mammogram, I haven't been able to bring myself to give her that validation. Something about poking and prodding around the thing that is trying to kill my wife makes me want to hide in a hole. Luckily, Dr. Dumlao has no such reservations, and confirmed that the tumor now occupies most of the space in Tamara's upper breast. Yikes. Hurry. Please.

The one medical appointment that I left off the list above is the first chemo treatment. That is scheduled for Monday - even before the central port is installed. This first treatment will be done with a typical IV because we couldn't get the port installed early enough. We were told that the oncologist would likely want to move quickly with chemo, but dang! This all came at us so fast and I don't feel like either of us have had a chance to catch our breath. Worst of all, if said breath were to be caught, we'd just be giving this thing more time to grow. So ... new rule: no breath catching allowed.

Even so, we're hoping that we can fall into something resembling a routine once all the initial tests are done. I say that because this next week is going to be bananas, and if things are going to be like this for the whole 6 month treatment regimen, one of us is going to lose our marbles. The list of appointments above, now including Monday's chemotherapy treatment, are only half the story.

One of Tamara's bone scans will leave her "glowing" (i.e. radioactive) for a full 24 hours, during which time she'll need to be quarantined. Elianna's birthday is on Saturday, so Tamara will need to stay 3-feet away from all of us (especially the kids) until about midway through the birthday. Elianna is not pleased, but I think she's forgetting that I can make a pretty great breakfast, too.

The twins' birthday is next week, a couple days after Tamara's first chemo treatment and the day before the central port installation. That port will be installed surgically, which means she'll be unable to lift more than 10 lbs. for 3 weeks post-op. It's a good thing we have older kids who can hold a baby, or we'd be in trouble.

A couple days after the port installation is Evan and Nathan's birthday party. The good news is that it will mostly revolve around video game tournaments, which is my specialty. The bad news is that very little else about birthday parties is my specialty.

Dizzy yet? Me, too.

Regardless, we'll figure it out ... along with all the soccer practices & games, family pictures (scheduled urgently because Tamara will be losing her hair soon), church activities, and company retreats (yes, I'm supposed to be at a company retreat the same week that Tamara gets her port installed and the twins have their party). The point is, we'll figure it out. And if we don't, something will fall through the cracks and we'll move forward anyways. Remember? No breath catching!

There you have it! You're all caught up. Honestly, this is all terrible and I won't try to sugar coat it. But I would be ungrateful if I didn't acknowledge the generosity of so many people. From kind text messages, to mysterious Amazon deliveries that show up with items meant to make Tamara's treatment less horrible. Some of those packages have shown up with no name attached, so we can't thank you directly or by name, but thank you all the same. We love and appreciate you all and feel blessed to know you. God has some kind of plan cooking and I don't always like figuring out what's next. But I hope we can still acknowledge the little miracles that remind us that His hand is in the details.

Until next time ... here is a scan of the notes that Dr. Dumlao wrote down as she outlined the plan to us. If you understand it, feel free to reach out and help us understand it better. Kidding, I understand it ... mostly. But if you have any medical school under your belt, let me know what you think.

Read the next update

Read the previous update

Breast Cancer Awareness Redefined

 "Does anybody blog anymore?" That is the question Tamara asked me when I suggested that we use our old, neglected blog to provide updates. I responded that I don't think we'll regret having a platform to use as an update hub as we move through this journey. Short story shorter - here we are. And here is where you can find most of what we know.