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.

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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!

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