It's been almost 3 weeks since I put fingers-to-keyboard here. I just went back and skimmed through the most-recent update and I'm hoping that this update is a bit more upbeat. We clearly needed a break from the cancer center.
The "plan" I spoke of in that update worked and Tamara skipped her chemo treatment the week of Christmas. But honestly, I'm not sure how much of a plan it was. It involved 1 step - don't go to chemo. Still, she accomplished much by executing that 1 step flawlessly. Lot's to catch up on, so I'll dilly dally no longer.
We did end up checking in with the kids to see how they're doing (another thing I referenced in the last update). We were surprised by a few things they said, but my biggest take-away from it was that we need to do it more often. They're struggling in many ways. The way they internalize events and situations is alien to me in some ways, but very familiar in others. I learn from both.
For example, we learned that Elianna had been plagued by festering guilt since Tamara's intense bone pain episode. She was one of the last kids to return home from playing in the neighborhood that evening and felt like she should have been there sooner. Imagine that ... guilt. We did our best to just listen and not judge (or even comment on) the feelings they were expressing. Hearing that she felt guilty tested my resolve to remain stoic. I wanted so badly to reassure her that she did nothing wrong, but worried that the others' expressions would be tainted by jumping to reassurance too quickly.
We went around the room, and as we did, every one of them broke down in tears. They all still feel like this is all very unfair. "Why did this have to happen to Mom? Isn't it enough that we lost Grandma after watching her suffer for so long?" (Paraphrasing.)
Nathan also had an interesting response when I asked him specifically about how he felt as he watched his mom in pain, and as I instructed him to play with Evelyn. He told us that he didn't really feel anything. In his words, he was in "a kind of nothing world."
Having given them all a chance to express their thoughts and feelings, we noticed that there were some gaps in their understanding of what happened and why. So, we filled those gaps and then tried to help them understand where their feeling were coming from. After what seemed to me like hours, we finally circled back to Elianna and made sure she knew she had done no wrong. We agreed with all of them that none of this is fair. And, using Nathan's "nothing world" as inspiration, we had a little discussion about the different ways our brains and bodies respond to trauma and injury.
It was a good family cleanse that everybody needed. It's so easy to get caught up in the day-to-day and forget that everybody has wheels turning and webs spinning in their heads and hearts. If we just let our own thoughts and feelings fester inside of ourselves, I think we just drive ourselves to loneliness and self-defeating behavior. Heading into the week of Christmas, we didn't need any of that garbage hanging around.
Weekend Before Christmas
The weekend before Christmas was a bit more hopeful than we had anticipated. Just the thought of not doing chemo for a week lifted everybody's spirits. You do a lot of looking forward when you or your family member is fighting cancer. We had a lot to look forward to and we all got a bit of a jolt of positivity from it.
Watch: Baby in a Christmas Tepee
For one, the company I work for closed down from December 22 - January 1. That sad looking Christmas Tepee I photographed in the last update was finished, and it actually worked out pretty well. I was able to finish the flooring in my office, which also allowed me to put a whole bunch of tools and construction equipment away. With that, and with the house decorated to about 50% of our normal level of festive-ness, it finally started to feel like Christmas.
Another thing that really lifted our spirits was a surprise Saturday visit from the breakfast fairy. You know who you are, and you should know that we still haven't made it all the way through the bounty with which you blessed us. Thank you! The kids were so excited and our morning routine has been lightened.
Sunday, the 22nd was great as well - and not just because church was only an hour. That hour was pretty special, in fact. There were several musical numbers performed by members of the congregation - all beautiful celebrations of the birth of Christ. We had two boys sing with the primary children, and two also sang separately.
Jaydon sang a duet arrangement of The Little Drummer Boy with a girl in the ward. Elianna sang "Sing for the King" with a group of girls, and she sang Mary's Lullaby solo. Both Jaydon and Elianna did our hearts good. Jaydon seemed unflappable for someone so young, and it was so gratifying to hear Elianna overcome her nerves to hit some notes that challenged her range. Her voice is maturing and it is beautiful. I would have loved to see my mom's reaction to all 4 songs that her grandkids sang. I hope she was able to sneak away from her duties on the other side to be there and listen. She would have love it.
Christmas Eve Traps
When the big week arrived, we were admittedly a bit behind schedule. There were a few loose ends that needed to be tied up, and honestly, some of them remained loose as Christmas came and went. So, Monday and Tuesday were pretty busy. Christmas Eve is our Super Bowl, as parents. We have a few traditions that add a little extra excitement and magic to the occasion - even as the kids get older. Tamara made a delicious Christmas Eve dinner, we watched a video depiction of the Nativity, and everybody opened the most predictable Christmas gift ever - Christmas pajamas. Then, having been reminded what Christmas is all about, the kids were sent off to bed. And so began the 4th quarter of our Super Bowl.
Story time: When my older siblings were little boys, one Christmas morning they woke up and opened all of their presents while my parents slept. Some of you might have just read a completely normal sentence. To my dad, a professional amateur family videographer, that first sentence was a tragedy. Unwilling to concede the complete loss of documenting the present opening phase, he and my mom re-wrapped all the presents. They then made us, their kids re-open all the gifts with the camera rolling - for posterity. (For the record, I've never seen that footage.)
Not wanting to ever chance a repeat of that Christmas debacle, my parents made a deal with us. If we were able to successfully evade my dad's traps, we didn't have to wait for the parents to sleep in, shower, get ready for the day, etc. If we were caught in his traps, we had to return to our rooms to wait as they took their sweet time.
My dad's traps usually have something to do with pot lids falling on pots and pans. Trip wires, wedges in door jams, fishing line. The idea was to make a lot of noise when we triggered the trap. We put a lot of effort and planning into beating him every year - usually for naught. For example, I once spent the night in a furnace closet with about 18 inches of space to sleep (yes, I brought my pillow). Totally worth it, because by golly I beat the traps!
This tradition has continued in our home, and the kids are the perfect age. Old enough to be tough competition, but young enough that they haven't succumbed to teenage apathy. On the Sunday before Christmas, they actually held a secret planning session that, predictably, ended with one of them storming down the stairs, upset.
Christmas Eve came, and after arranging all the stockings and building a new trampoline in the back yard until about 12:30 AM, we set about to make sure everybody was in their beds. Tamara went upstairs and immediately noticed an item out of place in the playroom, that happened to be covering our toddler play table. She found Evan under said play table trying to beat the traps as I had done in the furnace closet a couple decades prior. Nice try, bud. With all 6 kids securely in their respective rooms and beds, I had a decision to make. Do I go with the simple, tried and true party streamer trap? No. Like Inigo Montoya of Princess Bride said about starting the duel right-handed ... "Over too quickly." These kids had put some effort into their strategy. Matching their energy was the least I could do.
So, I stuck over 100 command hooks to two door jambs (about 50 per door jamb) and ran hundreds of feet of fishing wire back and forth until I had a wall of fishing line blocking them from leaving the hallway. That fishing line was connected to 4 different metal lids that were dangling in my bedroom doorway above their respective pots. But that was just the decoy. The real trap was just a simple trip wire at the end of the hallway - fishing line again - connected to yet another pot lid.
By about 4:30 AM, all the traps were set, and my bed welcomed me mercifully. Unfortunately, I was so excited to see how my traps performed, that I ended up getting maybe an hour of sleep. Around 6:30 AM, we started to hear door knobs and excited whispers. The kids had actually done a good job getting past the first set of decoy traps. But they got careless and lost track of which lines they had disabled and which were still live traps. Nathan somehow got some fishing line looped around his foot and when he tried to move said foot, one of the lids fell onto the pot. Busted!
Sitting then on a field of victory, Tamara and I enjoyed a few well-earned hours of sleep, much to the dismay of our defeated offspring.
Christmas is fun.
Everybody seemed to react well to their loot, and even-better, they seemed genuinely appreciative of the inter-sibling gift giving. If I hadn't felt like I was sleepwalking the whole day, it would have been perfect. But hey, I didn't choose the Christmas Trap life. The Christmas Trap life chose me.
Watch: A Baby and Her Dancing Cactus
Visiting Family
I don't remember what happened the day after Christmas. I think Tamara and I just rested while the kids did their best to wear out whatever new thing they had acquired the day before. On Friday, we were excited to welcome my dad, Katelyn, Devon, Lexi (Devon's partner in crime), and Luca (Devon's mini-me). They made a quick day trip down to Mesa from Pine and it was great to see them. Devon and Katelyn live in Utah, so we don't see them enough.
They made it in time to catch the Barro's Pizza lunch special (best lunch value in the Phoenix Metro), so we all grabbed a couple slices. With lunch done, we all felt pulled to visit my mom's grave. It's much too soon to expect a headstone to be placed, but we still wanted to be there. Tears were shed, silences were held, flowers were placed, and photos were taken. My mom loved nativity sets, and has collected quite a few of them over the years. Once a gravestone is placed, I'm going to make it a point to decorate it with a nativity around Christmas. I think she'd like that.
With our catharsis tanks full, we headed back to the house to check another "must-do" item off the list.
One of the more-exciting gifts our family was given was the board came Catan (or as my family calls it "Settlers"). I have a few in-laws (and maybe even siblings?) that refuse to play the game due to trauma associated with obsessive rule-checking. But for those of us who love some good board game litigation, Settlers is a staple in the Delwyn & Shelley Ray family.
So, we opened and unpacked the brand-new game, and 4 of us settled in for the struggle. As the gift wrapping was removed, the kids had showed muted interest in another board game, but I like to think that they were inspired after seeing how my family played. They stood around us absorbing every bit of strategy and know-how they could. When the dice went quiet, Katelyn emerged victorious - a distinction typically reserved for Devon. There was a time frame where he went several years without a defeat.
More-importantly, my kids were hooked. Nathan was 100% sure that he had the game figured out. Further, he actually began predicting my unavoidable demise whenever his first attempt at the game took place. "Dad, I can't wait to beat you on my first time playing the game!" Oh, the arrogance of youth. In the span of two weeks, averaging 1 game played per day, he has yet to win a game against me or anybody. To his credit, he still thinks it's fun.
With the outcome of the game with my dad and siblings decided, they said some quick goodbyes and returned north to the Mogollon Rim country.
A New Year vs An Old & Tired Routine
The week of the New Year started with a somewhat unsettling omen. Despite the break from chemo, Tamara woke up Sunday morning feeling chemo-like symptoms - bone aches, nausea, fatigue. Not great. We still don't really know what that was about, but our best guess is that the dread she feels in anticipation of returning to the cancer hospital manifested physically. When she's sitting in the chair at the hospital, and the nurse is doing an IV flush, she gets a really bad taste in her mouth. And on Sunday nights, as she puts the ice packs for her mittens and booties in our freezer, the same IV flush taste hits her mouth. Then again, the taste returns as she packs the ice on Monday mornings. The last time she needed to get ready, she had me pack the ice so to avoid what we're convinced is a trauma response.
The week of New Years, the cancer center was so busy that we had to do the blood work and oncology appointments on Monday, followed by the chemo treatment on Tuesday. They couldn't squeeze her in to a same-day appointment. It was probably good, however, because it left room for imaging.
I actually was late to the appointment with the oncology nurse practitioner, because they started 1/2 hour earlier than expected, so I had to join via phone call while I was driving, and finish the call from the parking lot of the hospital. Already a bit annoyed that I had driven down there just to listen to the appointment, some of what was said in that meeting had me sympathy ranting to Tamara afterwards. Suffice it to say that medical professionals behave in frustrating ways at times. I'll get into more detail on that in my next update. For now, here's some more positivity.
Yes, Tamara went in for an updated mammogram and ultrasound on Monday the 30th which returned very positive results. A few weeks back Tamara had found a very small lump in her right armpit (the tumor we've been treating is on the left), and we were pretty concerned. But not to worry, the ultrasound confirmed that the lump is just a cyst that can be removed by a dermatologist. Hooray for that!
Strangely though, the labs showed that her white blood cell count had dropped along with her neutrophils and other indicators of immune health. Nothing crazy ... but we had assumed that a week off of chemo would improve things.
But the bigger news is that the mammogram revealed that the tumor has shrunk to 1.8 centimeters. Averaging that out over the course of the treatments, the tumor had been shrinking by about 0.5 centimeters per treatment. With no additional problematic masses found, and with the tumor significantly downsized, we had good reason to celebrate a new year.
Still though, she did have a treatment and I ended up having a rather embarrassing "you had one job" moment that I think Tamara is still suffering from. As usual, I went with her to the cancer treatment hospital, and we brought the normal gear. Pretty much as soon as Tamara was all hooked up to the fluids and poisons, we both passed out. I'm not sure what the hospital was piping into the A/C vents, but it could have been poppy seed pollen for how quickly and hopelessly we fell asleep. My chair is never comfortable there, so I don't know how it happened.
And wouldn't you know it, I slept right through my ice bootie duties. Tamara took the whole Taxol treatment with no ice, which as you may recall, helps to prevent neuropathy. Keep that in mind for later, because I think she paid the price for my bout of narcolepsy.
Having received a chemo treatment on the morning of New Years Eve, it was a less-enjoyable celebration for her. But she was a big-time trooper and partied right alongside the most festive among us. We passed the time with a football game (thanks, Dad!), some napping, video games, an afternoon with cousins, a decent spread of party snacks, and a healthy dose of fireworks with the neighbors.
At midnight, everyone but the baby was still awake and sipping Martinelli's. It's become somewhat of a tradition for the kids to demand that I turn on Home Free's version of Auld Lang Syne a few minutes after the count down ... and I happily obliged. It's one of my favorites.
Happy New Year!
Having thoroughly exhausted ourselves the day before, January 1 was spent mostly in lounge mode. The ASU football team did their best to keep our hearts racing for most of the afternoon, and even Tucson Native Tamara found herself pulling for her hated rival toward the end of it. Mostly, I just think she loves seeing me excited ... and seeing Texas brought back down to earth helps, too.
I had every intention of starting the new year off right with a very productive Thursday, Friday, and Saturday. Alas, the plague had other plans. Maybe because all of my holiday magic duties had been fulfilled and my body stopped running on adrenaline, or maybe because all the sugary drinks and snacks from New Year's Eve broke the insulin camel's back, but whatever the reason my body finally succumbed to another cold. I had just stopped coughing from the last one.
If you ever want to be humbled, get a cold while your wife has cancer. I was useless both Friday and Saturday, while Tamara went about her day (note: she was starting to get a cold as well) as if nothing was wrong. At one point, I looked at her list of accomplishments vs mine and said "I really hope Man Colds are a real thing. Because if they're not, I think I'm just a big wuss."
And that wraps up the holidays with the Rays. I've got to stop here. This update is too long as it is, even though so much has been left out. I'll pick up the next one starting with the treatment on Jan 6, and I won't wait 3 weeks to do it!
If you've brought us dinner, watched our kids, said a prayer in our favor, or even just thought of us for a moment, I can't thank you enough. Some of you have done much more than all of that. You're all so good and we're so lucky to not be alone in this. To consider how many people go through cancer without the support of a good tribe produces some surreal feelings. I can't imagine what that's like. So, thank you.
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