So, it's April now; half-way through, in fact. Not since early February have I left an update here, and in that time I've had to apologize to a few people for not spreading the good news. About a week after the surgery, we got the pathology report back on the breast tissue and remaining lymph node tissue. The results of the lymph node biopsies read as follows: "negative for metastatic carcinoma". So, the lymph nodes remain a non-issue. More important and exciting was the result of the breast tissue biopsy: "No residual invasive carcinoma (pathologic complete response)".
That last phrase in the parentheses is very important and meaningful. You may have heard it or read it before from me because it's the phrase that our oncologist repeated to us ad nauseum. It means that the cancer is gone, that they can't find any evidence of its existence anywhere; that the chemo was effective; that doing another more-intense round of chemo would have been pretty pointless.
The Wednesday that the report was released, Tamara missed a call from the doctor's office a couple minutes before the office closed for the day. She had a feeling that the call was about the report, so she checked her online portal and found it. When we first read the report, we saw that "pathologic complete response" phrase and were excited. We were also hesitant to believe it could mean what we wanted it to mean. If you've ever seen a pathology report before, you can probably relate. There is a lot of medical mumbo-jumbo to sift through.
Not wanting to wait the whole weekend to hear the results, we emailed the report to my cousin Eldon, who is a radiologist. He quickly confirmed that our excitement was warranted and asked us how we were going to celebrate. I told him that "Tamara just ate a chocolate cookie as we told the kids. I think that's about all the celebration she can handle right now." The next day, Tamara had an appointment with the surgeon where the good news was repeated.
First Few Days Post-Op #1
Going back a week, I should get into why Tamara wasn't able to do more than eat a cookie in celebration. (She hadn't been eating sugar for a while, so a cookie was a big deal at the time.) After the surgery, we had a couple days to figure out how to manage recovery. My brother Jason had taken our kids into his home for the weekend and my sister-in-law Michelle wouldn't arrive until Sunday afternoon.
The first thing I noticed as we unpacked the bags from the hospital was that we were going to need a place to put all the stuff. Pill bottles, fluid cups, note pads, snacks, chargers, pillows - there was just a lot of stuff to manage. So, once Tamara was settled in her recliner, I went to the store to find a bedside table of some kind. I ended up getting a couple of folding tables - the kind that you eat your TV dinner on. In my head, we would only need 1 table and I could use the other one for little surgery recovery dinner dates. Turns out, she needed both for all the stuff.
So, between waiting 6 hours to be discharged and getting a couple of little tables, our Friday was filled. Saturday was equally packed with activity. I took hundreds of steps and we were able to check a few things off of our to-watch list. In all seriousness, we took it pretty easy aside from learning how to use the fluid drains and strip the tubes. We're going to have to do that again, or I'd probably say something like "if I never have to touch those tubes again, it will be too soon." Alas, the anxiety-inducing process of squeezing and stretching those tubes will return sooner than we thought.
The Out of State Sisters-in-Law
Sunday started off just as relaxed as Saturday, but ended with a pretty full house. Michelle and our kids arrived at our house within about an hour of each other, and we got a surprise visit from Tamara's parents (thanks, again for the Eegee's - it didn't last long). The rest of the week is a bit of a blur. Michelle did Michelle things, which means that everybody laughed a lot and felt very loved.
Michelle was here the week leading up to Valentine's Day, so aside from alternating between helping care for Tamara and Evelyn, her crochet needles were rarely idle. She made "Love Bugs" for all of our kids, and even helped Jaydon with his classroom Valentine mailbox thing. Incidentally, you may be surprised to learn that crocheted yarn makes for a great Minecraft Creeper.
Tamara progressed in her healing pretty quickly during this week. She got two of her fluid drains taken out that week, and did her best to push the activity limits her doctors had put in place. Tamara is gonna Tamara, after all. She hates feeling like a burden, and she hates sitting around even more. So, this recovery period has been very difficult for her. We're both doing our best to learn how to let go of what we can't control.
When Michelle left, her absence was almost immediately felt. As the saying goes, you don't know what you have until it's gone. Our household is a two-adult household, and doesn't function as well with anything less. With Tamara's adulting capacity reduced by at least 50% during surgery recovery, we were about half an adult short over that weekend.
As I've mentioned before, Tamara has always been most-comfortable when she's on the go. And when she feels like a burden, the drive to push her physical limits is overwhelming. My instincts are pretty conservative and averse to risk, so I go in the opposite direction, trying to keep her seated where I can see her. I found myself constantly scanning the house for things that she might try to do, so that I could beat her to it.
It was exhausting, but we both learned to meet closer to the middle. I ran out of gas and stopped trying to micro-manage her. And she started to recognize that over-exertion has a price.
Needless to say, when Chloe (another of my amazing sisters-in-law) arrived the following Sunday, we all hailed the return of the cavalry. Having arrived from Utah, where the weather was pretty cold at the time, she was keen to be outside in Mesa's beautiful February weather. Before even attempting to settle in (seriously, I think her suitcase was still sitting in the entryway of our house), she started asking which park she should take the kids to for the afternoon.
Tamara continued to heal throughout the week and progressed to the point where the other two drainage tubes were taken out, which was a great relief to both of us. Those tubes were stitched to her side to prevent them from being yanked out prematurely. And you have to "strip" them twice-a-day to make sure all the fluid ends up in these little pouches attached at the end of the tubes. My blood pressure shot up every time we had to strip those things because I was terrified of my finger slipping and pulling on the tube. Something about tugging at stitches makes me lose my color and my courage.
Like Michelle the week prior, Chloe stayed very busy and was another incredible support to us. Sadly, I fear that there was more we could have done to make her stay more enjoyable. Specifically, my kids didn't let her win a single card or board game until her last day with us. Catan, Monopoly Deal, SkyJo, Rook, you name it - she played it. And yes, on her last day with us, she finally scored a victory (I think it was Catan). Apparently, we're raising some legit gamers.
I can't adequately express how important and timely the service of these two sisters was for us. Tamara and I hadn't expected things to move so quickly towards surgery, so we were not super prepared. I, especially, was not set up for an extended absence from my work. Among a host of other ways they blessed us, Michelle and Chloe allowed me time to work and set things up to not leave my co-workers carrying a very awkward bag in my absence. Thank you both so much!
Burned Out in the Lull
The next week-and-a-half was another blur. I was able to take two weeks off work and we were back below two on the household adult count. I was pretty burned out and kind of just stopped pushing so hard to get things done. I still made meals, did laundry, and tried to make sure Tamara wasn't over-doing it. But our pace slowed down significantly, as did my vigilance with Tamara. I caught her doing laundry several times. Again, Tamara's gonna Tamara.
My drive and attention to detail in the first couple weeks were driven by a mix of anxiety and ADHD hyperfocus. That had mostly subsided by this point and my motivation fell off a cliff. So I started looking for ways to retreat into some escapist behaviors. Cabinetry mock-ups in SketchUp, video games, YouTube podcasts, etc. I did get all the cabinets for the downstairs modeled up, and I came across some interesting religious perspectives on YouTube (always a minefield). But I'd be lying if I said it was all productive. Honestly though, you should see the castle I built in Minecraft. It's legitimately impressive. At least, that's what my kids keep telling me. I think I've earned some adolescent block master cred. #winning
On March 5th, we met with the radiologist for a consultation. In our heads, radiation didn't make a lot of sense. "What exactly would we be radiating?" we asked ourselves. Well, it turns out that the radiologist had an answer to that question. With just about any other type and stage of cancer, achieving pathologic complete remission would have been enough to forego radiation. But Tamara's diagnosis was unique and, while there was some ambiguity, the most up-to-date medical science supported going ahead with radiation for her. The goal is to kill off any remaining cancer cells that might have gone undetected in the chest wall and close to the incision.
Leaving that appointment with a schedule for radiation was a bit defeating. It was another example of this stupid disease making decisions for Tamara. Almost 4 weeks post-op, she was starting to feel better as she gained more mobility and range of motion in her arms. Things were looking up only to have another toxic treatment thrust upon her. It was a bummer.
Katelyn and Spring Break
The last of our helpers was Katelyn, my one-and-only sister, who arrived on March 6th. She wanted to be here longer than she was, but had already exhausted much of her PTO last year as we all gathered to say goodbye to my mom. Still, the 4-or-5 days that she was here were awesome. I love watching my siblings with my kids. The way everybody has taken to our youngest, Evelyn, has been really sweet to watch. It feels good to have your offspring be accepted by the tribe. Katelyn was Evelyn's little buddy for those days. And as we did with Chloe, I think we burned her out on Catan.
We were, once again, sad to see her go, but so grateful for the time she sacrificed to lend us a couple extra hands and show her support. We had now had almost 3 weeks of help from the wonderful women in my family. And I had been able to take two weeks off of work thanks to the generosity of my co-workers. Tamara's recovery was supposed to last about 6 weeks and we were now 4 weeks into it. Then came Spring Break. It was kind of perfect because right when the live-in support stopped, our older kids were able to step in to help with the last two weeks.
We were able to do some fun things with the kids like celebrate Cayson's birthday, temple trips, and even a trip to Pine to play in the snow. All of that was difficult for Tamara for reasons beyond the obvious that I'll get into later. But I think the kids were most-excited about video games. During school weeks, they get to play video games on Saturdays after their chores are done. During Christmas, Fall, Spring, and Summer break, they can play as soon as they get their daily checklists done. Knowing that a family trip or adventure was out of the cards we were more lenient with letting them enjoy life however they wanted to.
At one point, Tamara came home from the store and sat down in my office with a somewhat resolute demeanor. Apparently, she had something to declare. "I bought myself something that you would never guess," she said. She then pulled out a video game - Nintendo Switch Sports, to be specific. And she was right. I never would have guessed that she'd buy herself a video game. Even so, Switch Sports is very on-brand for her. Even her video gaming can't be lazy.
She spent the bulk of that evening playing tennis, volleyball, and bowling with the kids, and had a great time doing it. The next day, however, was not so great. Her right arm and the right side of her chest, under the tissue expander, were giving her some pain. We chalked it up to a lesson about not over-doing it while she's still recovering and went about our business.
That first weekend of Spring Break, the owner of the company I work for had his assistant reach out to me, asking if I have a Ticketmaster account, and what email I use for it. I sent her the address and she followed up with a question about whether or not I'd be around on the 15th, to which I replied in the affirmative. At this point I was very curious what was up, but they didn't hold me in suspense much longer. They sent me 2 tickets to a Spring Training game to see the my Diamondbacks play.
That may very well be the best experience I've ever had at a sporting event. The only experience that might top it was when I took Tamara to the 2017 Wildcard game - the one where we beat the Rockies in dramatic fashion. Tamara became a baseball fan that day. But on this Spring day in the desert, I got to sit 4 rows back from the field right behind home plate. It was a perfect 75 degrees and partly cloudy. It was later into Spring Training, so all their best players were playing for the first 4-5 innings. But more-importantly, Tamara and I got to do something fun in the sun for the first time in months. We ate some hot dogs and even bought her a new hat. We met some cool people sitting around us, had to kick some old buzzards out of our seats once, and kind of forgot about cancer for a few hours. To quote one of the Lost Boys at the end of Hook, "that was a great game."
What Goes Up Must Come Down
This whole thing has been very up and down, and I just talked about something that lifted us up, so you can guess what's coming next. The first radiation appointment is all about getting the measurements right and calibrating the machines. They have to be very precise about where they point the radiation, and they have do it in the same spot every time. So, to help them remember exactly where everything was, Tamara came home from that appointment covered in stickers where they had drawn on her with marker.
She was also in tears about how hard it was. For one thing, she still didn't have the range of motion needed to lay on a table with her arms up the way they needed them to be. It hurt. A lot. And she had to stay still in that position for about 45 minutes. But beyond the physical pain, just laying on your back with your shirt off and your hands restrained above your head is a very vulnerable position to be in - traumatic even. When she left the appointment, she called me and just cried.
Things didn't really improve after that but life went on, and we managed as best we could. I had a lot of catching up to do at work, so I spent some long hours in the office. 3 of our boys started Little League and Tamara was still feeling the pain in her right side that started the day after she played Switch Sports. 2-3 weeks into that pain, we started to let go of the idea that it was caused by over-exertion. She also noticed some redness and fluid build-up where the pain was.
When we brought it up to her surgeon, they floated the possibility of removing the tissue expander, which made Tamara want to try and tough it out. It was possible that her body was rejecting the expander and would need to come out. The tissue expanders are annoying and uncomfortable, so Tamara has joked about getting rid of them and "going flat". But the prospect of actually losing one of them clarified what she really wanted. Talking about actually going flat or lopsided filled her head with thoughts of disfigurement and insecurity. That kind of stress on top of the pain has really cast a cloud over us, and neither one of us knew exactly what to do.
Easter and Holy Week Plans
As the Easter season has approached, Tamara and I were united in our hope that we could make this one special. We've been tinkering with ideas for different Easter / Holy Week traditions for several years and have really enjoyed trying to make Easter more than a candy holiday with weird egg-laying rabbits. Not since childhood have I been able to get excited about that part of Easter.
In discussing our options, we first landed on a kid-friendly version of a Passover Seder meal. Lamb & flatbread gyros, with a few other symbolic elements. Around that same time, the 5th season of The Chosen hit theaters. We have seen the whole season, parts 1-3, in the theater and enjoyed a lot about it. One part that hit us both in the feels was when Christ and his Apostles recite something called Dayenu. Honestly, we're new to the whole thing, so my ignorance is probably showing in how I refer to it. Even so, hearing them recite all the things God had done for their people, saying that even one of those blessings would have been enough ... it struck a chord in both of us. We decided to make that part of our Seder meal. We would recite it in English on Palm Sunday and then we'd write our own and recite them on the following Thursday (the day Christ suffered in Gethsemane) April 18th.
To mark and remember another part of Holy Week, we decided to "cleanse" ourselves of something, as Christ had cleansed the temple. For us, that meant starting something that would bring us closer to God or stopping something that was distracting us from our devotion to God. Tamara and I decided on a family screen fast (no TV, video games, YouTube or Instagram), and everybody chose something for themselves in addition (scripture reading, additional prayer, etc.). Putting all of this together with going to the Mesa Easter Pageant and a Christ-focused Easter Sunday, we were really excited about it.
How We Got to Another Surgery
Well, we did the Seder meal on Palm Sunday, and we were a few days into our "cleansing" efforts, excited to do our personal Dayenu on Thursday. But Tamara had an immunotherapy infusion on Monday that seemed to make the pain on the right side of her chest worse. With that added pain, she also noticed more swelling and redness. So, she took a picture of the affected area on Tuesday and sent it to the doctor to make sure it was documented.
On Wednesday, Tamara and I both received several calls from the doctors saying that they wanted to see her right after she did her radiation treatment for the day. She missed 3 or 4 calls from them and they even tried calling me twice to get a hold of her. They seemed pretty anxious to tell us something.
It was at that appointment, after radiation, that they confirmed that the pain was being caused by an infection and that the expander needs to come out. Apparently, there hasn't been any fever or chills because the immunotherapy (Keytruda), has been suppressing the immune response to the infection. They told her that they needed to admit her that day to give her antibiotics and such for about 48 hours, and that surgery was very likely.
Tamara came home to pack a few things, while I was out picking up the kids from school. When I got home, I was to take her to the hospital to be admitted. We shed a few tears together and shared a long hug before she hugged all the kids and headed out the door. After I got her settled in the ER, I headed home to make sure the kids were ready to go to the Easter pageant. Our 3 older kids were going with their church youth group, whose leaders agreed to let our two youngest boys tag along. It might have seemed like a minor thing, but it meant a lot to Jaydon and Cayson. At first, I had told them that they wouldn't be able to go, and they were sad to the point of tears. These poor kids have been disappointed so often through all this. Little kindnesses like letting them tag along mean a lot to them and us.
Speaking of kindness, another of my amazing sisters-in-law swung by to get the baby so that I could finish some things at work and then be with Tamara at the hospital. While the kids were at the Easter Pageant, Tamara and I played SkyJo in her hospital room. Her TV worked, but we still wanted to keep our commitment. And wouldn't you know it, we had some fun together.
About an hour after Tamara was admitted, the doctors confirmed that they'd be doing surgery on Thursday (the day we were supposed to do our family Dayenu) to take out the tissue expander on the right side. There will, again, be down time for that to heal. The plan is to let her body heal from the infection, and then possibly put the expander back in (another surgery). So, that's not great news, but I am glad that they're fixing the problem and that this doesn't have to be a perpetual pain thing.
Surgery #2 and the Aftermath
So, on Thursday, while Tamara was at the hospital, I got the kids to school and then came home to button up a few last items for work. Then, off to the hospital I went to be with Tamara as they prepped her for surgery. At about 2:15 they called me to let me know that the surgery was done and that everything went as planned. She has two drains again (ugh), this time both are on the right side. The surgeon said that she didn't see any puss (good sign) but that there was some fluid, which will be sent in for analysis. There was also some tissue growth around the expander, which isn't something they normally see. They've taken a sample of that tissue and sent it in for analysis as well.
We asked about that later and they clarified that the tissue was not sent to pathology. They sent it, and the fluid sample, to what they refer to as "infectious disease". In other words, they don't suspect more cancer, but they don't yet know what exactly it is. She'll be in the hospital for 48-72 hours, depending on how long the fluid/tissue analysis takes. Apparently, the "infectious disease" department has to sign off on her discharge, which I don't really understand.
Thursday was a whirlwind, and I'm not really sure what happens next. We went from being excited about the Holy Week to watching Tamara get carted off to surgery. After I got the call from the surgeon that the surgery was done, I left to pick up the kids from school - starting with the boys. I got them settled at home and left to get Elianna, telling the boys that I might just take Elianna to the hospital with me. On my way home with Elianna, I asked if she wanted to go to the hospital with me to see Mom. She did, so off we went!
When we got there, Tamara was awake, but still pretty loopy. She was excited to see Elianna though and there were more smiles in 5 minutes that I'd seen from her in 3 days. I hung out for a bit and then went back home to make sure the boys hadn't burned the house down. Arriving home, I did indeed confirm the structural integrity of the building, but walking inside I saw what happens when you leave chimps alone for an hour.
Our ward's (Church unit) Relief Society President had heard what was going on and had offered to provide meals for us, which I gladly accepted. I came home to make sure an adult was there to receive her. She delivered a wonderful meal us boys scarfed down pretty quickly. I didn't realize that I hadn't had much to eat that day, so that spaghetti and breadsticks really hit the spot. With my plate clear, I left the chimps again to pick up Elianna, bring Tamara a few things (cell phone, card games, etc.) and reassume responsibility for my baby. When I got to the hospital, Tamara and Elianna were playing "paper Battleship" (basically just the normal Battleship table game, but with a pen and paper). Apparently, God liked our Holy Week with no TV or screens, because he broke the TV in Tamara's room.
I put my things down and joked to Elianna that she should just stay the night with Tamara, since they seemed to be having so much fun. To my surprise, she agreed! We talked about it for a bit, and the more I thought about it, the more I liked it. I hate the idea of Tamara sitting alone in a hospital room after a surgery she didn't even want. But I needed to go home with the baby, and check on the chimps. So, it was decided and I left to get the baby.
On my way back from my brother's house, with the baby babbling in the back seat, Tamara called me asking if I could pick up some food for Elianna, and get a Jamba Juice for her. I did so, but didn't really think through how I was going to get the food to them with the baby. Let me tell you, holding a bag of Chick-fil-A, a water cup, a Jamba Juice, and a toddler while trying to keep the toddler from tossing the Jamba Juice was not easy. But we made it through the hospital, up the elevator and into the room, only spilling a little bit of the water cup.
At this point, it was about 8pm and Evelyn was begging for her own little bed. So, I said my goodbye's and left. And now here I sit an hour past midnight on Good Friday morning having caught you all up on the past two months of this insane whirlwind. All I can give you are the facts for now. I haven't had time to process any of it yet, but when I do, maybe I'll share my thoughts. In any case, we'd appreciate your prayers that (1) Tamara will recover quickly and (2) she'll be home for Easter. She had put a lot of effort into making this Easter special. It would mean a lot to her to be able to be a part of all of that in some way.
I love you all and appreciate all your prayers and support. Your kindness has quite literally saved us in more ways than one.
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