Ringing The Bell

So, this post won't be as eloquent because it is from me, Tamara. I do not have the writing skills that Jared has, so this may be more blunt and uncomfortable for some. But I thought I would write out how the last month and half or so has been for me. 

It hasn't been easy. Everyone told me that radiation was the easy part. I was looking forward to that. They started radiation with a mapping session. This is where you lay in a CT scanner unclothed from the waist up, for about 45 minutes. They put your arms up into these holders above your head like it would be for the actual radiation. They take pictures and measurements of where you are on the table, so that the lasers are always targeting the correct spot during radiation. They then mark your body with tattoos, and sharpie marker that they cover with really sticky stickers.  

Sounds easy enough...except at that point after my mastectomy I was still not able to raise my left arm above my head completely. So the positioning for that long hurt. I was feeling a lot of things and I didn't know why. I was reminded of my Mother in Law when she had to do an MRI scan while being in crippling back back pain. She got through it with prayer. I tried to use her example, but the thought of her also brought on more emotion during this ordeal. I got done with mapping, got dressed and went to my car and cried...from discomfort... and from emotions I couldn't understand. 

I started actual radiation sessions on April 1st. I had to go 5 days a week for 4 weeks, 20 treatments. 3 of those weeks would be the full treatment, chest wall, breast, and armpit. The last week would just be the incision area because our doctor told us that is where they see the most reoccurrences. 

For the first radiation treatment, I went into the the waiting area/dressing area and put on one of those fancy pink tie over scrub tops and waited for the tech to come get me. They walk you to the hall, stop right outside the big thick lead door and ask what your name is, date of birth, and area being radiated. (They ask these questions every time before you walk in.) It is a dark room, a chair on one wall where you undress from the waist up, and then the radiation table, big machines in the middle of the room, and computer screens and cameras all around. I get onto the table and they put my arms up into the holds, check all the measurements and markings, put a silicone mold they have made to fit over my breast, tape a device that knows when I take a breath, and tape my upper body down to the table so I cannot move. They then tell me to keep my head turned to the right and hold this position. Then they leave the room and tell you to hold your breathe as the machine goes around you first taking a scan to make sure the position is right and then to start emitting the radiation. 

But like the mapping day, I started feeling emotions like a trauma response as I was receiving this first treatment. I got into my car afterwards and again just started to cry. I started having thoughts and feeling that I have had before in my life but I thought I had worked through.

You see, when I was a little girl, I was sexually abused several times. It took me a minute to realize that that the little girl came out when I was on that radiation table. I didn't realize it but that position I had to be in was VERY triggering for me. Half naked in front of people, on a table where my head was turned, arms and body not able to move. Once I was able to realize where these they were coming from, I was able to process the feelings, knowing that I am in a safe place now. 

Because of these unexpected feelings, radiation was harder mentally. 

As the weeks went on, I started getting red spots on my right side. I had asked doctors about it and was prescribed more antibiotics, just in case, but it wasn't helping. I asked the radiation techs if it could be from radiation at all. They were concerned about it but didn't think it was from radiation. I sent messaged to my plastic surgeon about the progress but she wasn't able to fit me into her schedule. Another doctor saw my photos, and said I needed to come to the hospital right away. She took a look at it and sent me to be admitted for infection and surgery to remove my right tissue expander. Apparently, I had a nasty staph infection that was very dangerous but because of my Immunotherapy treatments, I did not get a fever and chills that would normally hint at having the infection. I was really disappointed to have the expander taken out...it means more surgery and longer recovery for everything. 

After getting out of the hospital, and getting to celebrate Easter with my family, I resumed the week and a half of radiation treatments that I had left, with drains still in on my right side from the surgery. 

I thought I was feeling vulnerable before the tissue expander was removed...but having to strip down with one one normal looking breast and one completely disfigured breast with drains sticking out was a whole new level of not only vulnerability but now pain to hold my right arm up. To top it off, the radiation techs don't often see drains during treatment, so they would bring in the new people to take a look and teach them what to do with it...Yay, more people to see me. I wanted to run and hide. But also felt like a hypocrite for thinking that way because I have worked in the medical field and I have been the trainee learning. I obviously got through it, but again, it was hard mentally. 

Physically, at this point, it was getting more and more difficult each day. They said at the beginning that my fair skin would do better, that porcelain skin seems to burn less with radiation. Well I must be an outlier in that statistic too. Despite my religious applications of Aquaphor and other creams, they told me to use,  I burned real good. I blistered. Blisters that would rub in the armpit and along any bra. My incision scars began to stretch out and open up. The radiation tech saw how bad it was and suggested I wear tank tops and no bra as often as I could. 

  (This was taken when I still had a week and a half left of treatment)

I was in so much pain from the burns that I was not sleeping, and during the day I would escape into a bathroom to let out a cry without my kids seeing so they wouldn't always be so worried. Also, over the past couple weeks, my breathing and oxygen levels started to suffer. We were told that radiation would damage 20% of my left lung. The radiologist said that I wouldn't notice the loss in function, but he must have been speaking long-term. I have noticed it.

Over the past week or two, I wake up unable to talk or take a deep breath without going into a coughing fit. I couldn't take a walk, walk up stairs, or do anything strenuous because my lungs haven't been able to handle it. It would typically clear up during the day, but if I laid down for a nap during the day, I'd have to start the whole process over again. And at night before bed, the inability to breath would come back. I started measuring my SPO2 out of curiosity and found that my levels were low in the morning and night (sometimes dipping into the 80s and low 90s). And almost worst of all, I couldn't sleep.

I was exhausted, uncomfortable, I couldn't breath, and I was in a lot of pain. The only way to manage that pain was with a combination of muscle relaxers and Ibuprofen. I was also prescribed oxycodone, but it all it did was make me dizzy and nauseous. With the pain so difficult to manage, I started researching and looking for other solutions.

A lot of people who have been through radiation before recommended CBD. I asked around for opinions from people I know, trust, and love and they consensus was that CBD would be (1) more effective, (2) less addictive, and (3) help me sleep at night.

I was very nervous about going to a medical marijuana dispensary by myself, because I've had nothing to do with the stuff for my whole life. S, I asked Jared to come with me to check out our options. I felt so awkward going not knowing what to get exactly. We went to a specific place because I had seen in my research that this place knows more about different situational products. After getting some gummies, I have been able to sleep at night. Which has been a blessing. I feel like because I am sleeping my body is also healing.

Oh, I did finish all my treatments. Yay! I rang the bell with my family all there. I am grateful for what have learned and the empathy I have gained, and I am glad it is over. :)

Surgery Recovery and the Latest

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.

Read the previous update

Home Free

We're home! And ... I have time to update you all on how everything turned out. The last thing you all read was the following paragraph at the end of yesterday's update:

"I just got an update from the breast surgeon. Everything is going well - Tamara is doing well with the anesthesia and things are moving along as expected. They took out 3 lymph nodes and biopsied all of them. ALL NEGATIVE for cancer. WAHOO! We'll know more once the full pathology comes back in a week or two, but this is a very good sign. Now, the plastic surgeon is beginning the reconstruction."

Picking Up Where I Left Off

In that first call from the surgeon, I was told one other thing that I didn't mention in yesterday's update. In short, Tamara bled a bit more than expected during the surgery, so even mid-surgery they were considering a transfusion to bring her levels back up to normal. Even so, she reiterated that it was all under control and the excess bleeding was nothing to worry about. With the breast surgeon's work complete, the plastic surgeon began the first step in the reconstruction process.

Reconstruction

I've had a few questions about reconstruction, so I'll clarify here. As it was explained to us, there are a couple ways to do reconstruction. One way is with silicone-filled bags, and the other is by repurposing existing tissue. Tamara's preferred option for reconstruction would have been to use her own tissue, and to do it during the same surgery as the mastectomy. But, again, cancer is making decisions for her, so she isn't getting what she wants.

The first roadblock Tamara faced is the possibility of radiation. Tamara is hoping (and so am I) that when she does get around to doing radiation, it will be deemed unnecessary. We know next-to-nothing about it, but that doesn't stop us from forming opinions. And from where we're sitting, radiation doesn't make a lot of sense. She just had all of her breast tissue removed - including whatever was left of the only cancerous tumor that was known to exist. So, what - exactly - would we targeting with the radiation? We don't have an answer to that question, and when we ask our oncologists, they say that we'll have to ask the radiologist when we get to that point.

The second roadblock Tamara faced is the possibility of more chemo. If the pathology report comes back and says that there was still cancer in the breast tissue that was removed, Tamara will need to do more chemo. At that point, it would be in pill form and less intense. But it still comes with risks and will still do damage.

With those two roadblocks understood, it has been made clear that doing the full reconstruction along with the mastectomy was not an option. If it turns out that we need to do either the chemo or the radiation, both are likely to do damage to the reconstructed breast. So, for the time-being, they placed a tissue expander in the place of the tissue they removed. This just keeps the skin from changing shape in the interim. Once we're sure that she's done with chemo and radiation, they'll go back in to finish the job. Right now, the plan is to do several months of radiation, and the plastic surgeon doesn't have any openings until the Fall. So, Tamara's stuck with the tissue expanders until then (unless plans, schedules, or surgeons change). If you had questions, I hope that answered them.

Very soon after I received that phone call from the first surgeon, my brother Jason arrived at the hospital to take me out to dinner. He was coming home from work and had called me about 45 minutes prior to see if I was available and hungry. We ended up going to Cafe Rio and I'm glad Jason was there, because I was pretty absent-minded. More than once, the people behind the counter caught me in a daze and had to repeat themselves.

Update From the 2nd Surgeon

After Cafe Rio, I drove home to grab a few things for Tamara. While I was home the plastic surgeon called with an update. The surgery was done, they did everything that was planned and Tamara was recovering in the PACU (i.e. post-op). Success! At that point, her levels and vitals were still borderline, so they didn't jump into doing a transfusion. She then told me to expect a call from the PACU nurse in 1-2 hours with another update. With that, we ended the call, I grabbed a few things and headed back to the hospital.

We live about 15 minutes from the hospital - basically a straight shot on the US 60 (one of our local freeways). On my way back to the hospital, I exited the freeway at the correct exit, but I turned North when I should have gone South. I was pretty deep in thought and actually made it a solid 2 or 3 miles before I realized something was up and had to turn around. But I did eventually make it back to the hospital and waiting room.

The PACU

When the PACU nurse called, she told me that Tamara's levels were still pretty low, so they decided to go ahead with a transfusion. This meant that they'd be admitting her and keeping her overnight. I was a little bummed about that, knowing that Tamara would rather be home, but they did say they'd come get me in a bit to see her.

Soon enough, I was escorted to her partition in the PACU. Tamara is naturally fair-skinned, but I had never seen her so pale. It was a little jarring, and it was clear that she'd lost a lot of blood. Even so, she responded when spoken to, and she smiled/chuckled when she heard a joke. Of course, she would fall right back asleep as soon as she stopped saying words, but she was somewhat lucid. When she said she was getting nauseous or in pain, they did a good job of tending to her and keeping her comfortable.

The first thing Tamara said to me was the question, "was there cancer?" I smiled and reassured her that "all three lymph nodes were negative - no cancer." She got really excited, in a frail post-op way, and asked "Really?! Anywhere?" I smiled again and reminded her that they only biopsied the lymph nodes today. We'll know more in a week or so. Still happy, but slightly disappointed, she fell asleep.

The nurse said that she would need two units of blood, and that they would start the transfusion in the PACU to gauge the reaction. By this time it was about 7:30 PM and I'm not sure what was going on, but it took over an hour from when I got there for the blood to be delivered. The nurse called the blood bank several times and apologized for the delay with every call. Everything went pretty smoothly from there.

Admitted to a Hospital Room

Tamara had no visible reaction to the blood transfusion and around 10 PM she was wheeled up to her room on the 4th floor. I wanted to stay until the transfusion was complete, but she'd only gone through one bag by 11:30 PM. At that point, the nurse asked if I was planning on staying the night, and I asked how much longer until the transfusion was complete. She said, "Well, she's going to need another bag." Clearly, the transfusion wasn't going to be done for a couple more hours, and by then I'd be sleeping uncomfortably in the chair next to Tamara's. So, I decided to scoot on home and try to get some sleep.

As I learned the next day, the transfusion went just as well with the second bag as the first. Her color had returned to normal, and she wasn't groggy anymore. Tamara did sleep but was interrupted all night by vitals checks and such. I have been surprised at how capable she is. Part of what terrified me about this whole thing was the picture in my head about her lack of mobility. I was picturing complete immobility from the shoulder to the elbow. And while she does have to be careful, she can put a spoon to her mouth, pull up her own pants, and reach laterally for a pen and paper.

You can't know what a relief this is to me. My anxious, impatient mood from yesterday has been replaced with optimism that we can get through this. It's not 100% on me. She's hasn't been in debilitating pain all day. We have tons of little creature comforts that have been given to us by kind people. We can do this.

Discharge

We sat in that hospital room watching TV for about 6 hours before they got around to discharging her. The nurse had to teach us how to use the fluid drains before they'd let her leave. I'm still getting used that part, but its not as bad as I thought it was going to be.

The point is, we're home. Tomorrow may bring something that changes things, but for now ... we're good. Thank you all!

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Waiting Room Update

Note: Tamara didn't proof-read this for me or provide any input, so expect typos and holes in the story.

This is a surreal place to be. Neither one of us was in a huge hurry this morning, and our steps were pretty slow walking up to the hospital entrance. Having a disease making organ removal decisions for you is one of the most [pause as Jared Google's "opposite of empowering"] ... discouraging attacks that can be made on a body. There's nobody to blame. There's nobody to complain to for restitution. Things just happen and all you can do is ask what to do next.

I'm not in a super great mood right now, as you might be able to tell. There's not much I can do from my seat in the waiting room and I'm just ready to be done. Tamara shouldn't have to go through this - she doesn't deserve it. It's a problem I can't fix or make better, and it's driving me crazy. There have been many days like this over the past while, and I try to just let them be. As long I don't let myself spiral into into functional paralysis, chronic bitterness or despair, I try to just let my feelings be what they are. Eventually, the ups and downs of daily family life will pull me out of whatever funk I'm in.

So, now to catch you all up on what we've been up to lately. T-Day (Tamara's last chemo treatment) was on Jan 13th and, honestly, we thought we'd be having more fun with chemo-less life. But it has still been hard. True to their word, our oncology team got us in very quickly for a couple surgical consults. We have mixed feelings about how quick it all happened.

On the one hand, if there does happen to still be cancer in the breast, we want to move quickly to prevent it from growing and spreading. On the other hand, Tamara was hoping to be able to go to a family gathering at the end of February (EFRW). Given that she's looking at a 6-8 week recovery, her prospects for interstate travel are pretty limited.

Before we went in for the consult, Tamara was reviewing her online schedule and saw that there was a post-op appointment scheduled. At that point, we hadn't had the consult yet and didn't know we had an op scheduled. So, how could we have a post-op scheduled? It was pretty jarring to go into those consults and have everybody talking at us like we were in the loop. We weren't.

In any case, Tamara is a much bigger fan of the oncology breast surgeon than the plastic surgeon. She had a consult with both of them on Jan 23rd. And don't get me wrong, we don't have anything against this particular plastic surgeon. It's just that the reconstruction consult literally means standing naked in front of a stranger while they point to your body and make observations. Those observations will always be received as judgements in Tamara's (and probably most women's) brain.

With the surgery consults done, we confirmed that they'll be doing a double-mastectomy, a lymph node biopsy, and the insertion of tissue expanders (the first step in reconstruction). They'll take a few lymph nodes out and biopsy half of each node right there in the OR. If they don't find any cancer in those biopsies, they'll send the other half to pathology for a full biopsy. If they do find cancer in the OR biopsy, the surgeon will need to remove most/all of them. We don't want that at all because removing nodes increases the risk of lymphedema dramatically.

Once the mastectomy is done, they'll send all of the removed breast tissue to the lab for a biopsy, alongside the other half of the removed lymph nodes. We'll get that pathology report in about a week after surgery. Once everything is examined, if it all comes back cancer negative, she may just have radiation left to do. If they find cancer in the tissue, we'll need to do more chemo in addition to radiation. So, again, we're praying for full pathologic remission.

We left the consult appointments with a lot of big feelings. Scanning through my memory, I can say with a high-degree of confidence that none of those big feelings were positive. My anxiety level shot through the roof, and Tamara's emotions have mostly been shut off since. The surgery was scheduled for today, February 6th, which meant that as of January 23rd, we had 2 weeks to get ready. I'm just now realizing that I never said anything of Facebook or Instagram, so I apologize if the info didn't get to you before now. But I did send out a few texts to family, informing them of the surgery date. Then, we began couple weeks of feverish preparation.

Most of the preparing that I wanted to do involved home projects. My dad had already spent a Saturday and a Monday building cabinets with me in January, and I would need his help again to get our Master Closet done. Our bedroom has been a disaster for a while, because we've been remodeling for about 2 years. I wanted to make sure Tamara had a clean, peaceful environment in which to recover. And she, knowing that after the surgery, we'd have people helping us out, wanted to not feel embarrassed by the mess.

Tamara's preparation for surgery recovery looked a lot more like preparing me and the kids to step into her shoes. When I stop and think about how much she does and how well she does it, the idea of stepping into her shoes makes me want to hide in a cave somewhere.

So, off we went to the races, right? No. On Saturday night going into Sunday the 26th, I woke up at about 3 AM to the sound of Tamara whimpering. I sat up/rolled over to see her in pretty significant distress and I asked what I could do to help. She was cold and in pain. She was covered with a sheet, comforter, and heated blanket, but was still shivering. The shivering was triggering the neuropathy that the chemo treatments so nicely gifted her.

Once again, calling upon the lessons I learned from my sisters-in-law, I started squeezing her arms and shoulders. While that did provide some relief, it wasn't a cure. The next several hours were not restful for her, despite our best efforts.

Morning came, and it was time to get ready for church. I made sure that Tamara didn't move from the bed and I piled on a few more blankets to help her get warm. Then, the kids and I got ready for 9 AM church. With all of us piled into the car, I turned the key and nothing happened. The battery was dead. "Well, I guess we're not going to church" was my first thought.

Then, I thought about how the day would go without the spiritual uplift that we all needed. Also, Nathan was supposed to be set apart as President of the Deacon's Quorum that day, and Evan the First Counselor. Nathan was particularly excited about making that calling official, so I had to make it happen. We were already almost late for church, and all the padded pews were probably taken, so whatever I was going to do needed to happen quickly. I hurried as fast as I could to grab the jumper cables, pop the hoods of both our cars, and jump the family car's battery.

Arriving at church, we all piled out and hustled inside. Walking into the chapel, we heard that the congregation was still singing the opening hymn. "Good, we're not super late" I thought. Then I noticed what they were singing - It Is Well With My Soul. That song carries special, recent significance for my family and I. We sang it at my Mom's funeral just a few months ago in September. And her birthday is January 27th. This Sunday was January 26th, so she had already been on my mind. Sitting there with my toddler on my lap, trying through my tears to force my mouth to make noises that resembled singing, I felt like my mom was sending me a little message. "I know it was hard for you to get here, but you're in the right place. Good job." I didn't hear a voice or anything. Just felt like she was giving me an atta boy - a desperately needed atta boy. Jaydon was sitting next to me and I'm sure my sobs were pretty shocking to him. But I guess he knows grown men cry now, right?

After church, and after participating in setting apart my two boys, we went home. For those not familiar, "setting apart" is a special prayer of sorts that gives authority to a person who has been called to serve. Think of it like an inauguration ... but through prayer.

When we got home, Tamara's condition had not improved. She had moved downstairs and was sitting on the couch, wrapped in blankets. I approached her and felt that she was warm. So, I grabbed the thermometer and pulled a temperature of 101+. Fever's are serious business for chemo patients, and we had been told to go to the emergency room if there was ever a fever over 100 degrees.

We called the hospital and the on-call oncology physician confirmed that Tamara needed to go to the ER. As we were in the waiting room I sent a text to the family group asking for prayers. Soon after that, my brother and sister-in-law offered to take our kids to their family dinner. Thank you Jason and Edythe. You made the kids' Sunday afternoon really fun, when it could have been a traumatic one.

As for Tamara and I, we mostly just sat there and snoozed while we waited for test results. 4-5 hours later, nothing was positively confirmed - they weren't sure why she had the fever. She had been dealing with an increasingly intense cough over the past week, and they saw hints of congestion in her chest x-ray, so they gave her some antibiotics for bronchitis and sent us home. It was a very expensive nap.

The next day was my mom's birthday. I was in a pretty melancholy mood all day, and I soon learned that I wasn't alone. That's the great part of about big families. You're almost never alone in your grief. Not really knowing how to celebrate the birthday of a loved one who passed so recently, we decided to visit grave together. Jason and his family met us at the grave site and we spent about an hour singing and reminiscing. Then we went home and had some "heavenly hamburger" - a casserole that she used to make for me on my birthday because it was my favorite food.

We capped that day off with a family video call where we just kind of sat around and stared at each other in between descriptions of how weird our day was. In any other context, that kind of call would have been torture. But when the context includes people who get what you're going through ... for me it was comforting. Sometimes a defined meeting agenda is inappropriate.

The melancholy state of my mood continued for a couple days. But with just one Saturday remaining between us and the big day, I needed to hustle if I was going to get our bedroom ready for post-op Tamara. Dad came down on Saturday and we were able to finish building Tamara's side of the closet. I had hoped to get the whole thing done, but my brain just wasn't firing on all cylinders, and my planning and execution left a lot to be desired from an efficiency standpoint.

We also had a visit from some leaders of our church that Saturday. One was President Enos, our Stake President (leader of all the congregations in about a 5-mile radius around us) and Elder Hans Boom, an Area Authority Seventy (regional leader in Europe) from the Netherlands. Elder Boom was visiting to speak at a conference that we attended on Sunday, Feb 1st. No doubt, they heard of Tamara's plight and wanted to visit to provide any kind of uplift they could. And they did. We visited for a little while and got to know each other. Then we asked them to give Tamara a priesthood blessing that they let my Dad and I participate in. We then said a sweet, thankful goodbye to them.

Since then, the days have been somewhat of a blur. I was able to get the closet done on Tuesday night. And finally, last night, we moved around some furniture and did a some cleaning. I'm happy to report that, with the purchase of a new-to-us recliner, Tamara has a clean, peaceful bedroom in which to rest for the next 6-8 weeks of recovery. I've taken today and tomorrow off of work, and Jason offered to have our kids stay at his house until Sunday. That will give Tamara and I a chance to settle in and figure out how her recovery will work without having to worry address complaints about who is getting more Nintendo time than the other. 

It will also give our kids something to do besides mill around the house worrying about their mom, or sitting in a classroom definitely not thinking about anything the teachers are saying. It means so much to us that our kids have somewhere else to be that is safe and will keep their minds occupied.

Quick story for context: Last night, Tamara and I got the kids to bed and went to Five Guys for a "last hurrah before surgery" burger. When we got home, we saw that somebody had heart-attacked our house. Tons of pink and red construction paper hearts were taped to our front door - each with an encouraging message for Tamara and our family (see the photo above).

When we walked in the door, we saw that Elianna was up, awake, and just sobbing. This whole thing has been really hard on the kids, but especially her. She already had dealt with anxiety prior to losing her Grandma Ray and watching her mom struggle through cancer treatment. She's been a mess lately, and I wouldn't expect anything different.

Tamara and I have both learned that trying to fix her feelings is unproductive, so we just sat down and asked her questions. She couldn't articulate any coherent thoughts that would have caused her to cry, so we all decided that she just needed a good cry. Tamara offered her some fries, wisely asserting that "french fries help." And we just chatted for a while about how different people show their feelings in different ways. After that discussion, we told her to go look at the front door. She brightened up immediately when she saw the heart-attacked front door. Whoever that was, thank you. Elianna slept a little more peacefully last night because of your kindness.

Knowing the kids would be taken care of for a few days was a huge relief. And knowing that Tamara won't be able to do any lifting, we also have some family members lined up to help with the weeks that follow. With their help, I'll be able to work mostly-full days for 2 weeks. Once were on our own, I'm planning on taking a couple weeks off to continue supporting her recovery. By then, we're hoping Tamara is mobile and doesn't need help with drains or anything (look up mastectomy drains if you want an anxiety attack).

So, it's now 3:17 PM and the oncology breast surgeon should be finishing up soon, if everything went to plan. After I get an update from her, I'll probably grab something to eat and wait for the final update. I can't promise a long update post for a while. I have no idea what the next few weeks are going to look like for me. I'm terrified, frankly. But as is always the case, all you wonderful people have made all this terribleness really sweet, in many ways.

From the random deliveries to our door, to neighbors dropping off gifts and care packages, to the construction paper hearts that lifted our spirits as we walked out the door this morning, you have all been so amazing.

I just got an update from the breast surgeon. Everything is going well - Tamara is doing well with the anesthesia and things are moving along as expected. They took out 3 lymph nodes and biopsied all of them. ALL NEGATIVE for cancer. WAHOO! We'll know more once the full pathology comes back in a week or two, but this is a very good sign. Now, the plastic surgeon is beginning the reconstruction.

Okay, that's enough for now. Thank you, thank you, thank you, love you all.

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T-Day: Tamara's Twelfth Taxol Treatment

Ferris Bueller once said something about how fast life moves. If I remember correctly (Who am I kidding? Of course I remember.), he was talking about stopping to look around once in a while or you might miss it. Is it weird that I refer to a teen movie character as if he's some sage of wisdom that actually existed? Maybe. But he was right. How often has a 1/2 hour conversation changed the course of your life? A close examination might reveal such things happen more often than you think.

Take yesterday for instance. At 4:15, Tamara and I were preparing ourselves for a few things:

• The 12th and final treatment of Taxol (yay!)
• A potentially contentious discussion with her oncologist
• The next phase of her treatment - a phase that would introduce a drug called Doxorubicin.

Doxorubicin - The Red Devil Dye

Many of the oncology nurses we've talked to affectionately refer to Doxorubicin as "the red devil dye." Patients who describe it online have been known to refer to it as "the red dye of death." If you're picking up what I'm putting down, you have hopefully concluded that it is red and unpleasant.

This phase of Tamara's treatment would have begun next Monday (Jan 20th). The Doxorubicin would be administered every 3 weeks for 3 months (so a total of 4 treatments). We've been told to expect that Tamara will be out of commission for a full week after a doxorubicin infusion. She would then have 2 weeks to not feel like she's dying before the next treatment. So, it's no fun and for 3 months we've been preparing for the eventuality of this red devil dye.

But by 4:45 yesterday, we had decided (with our oncologist) to abandon this 2nd phase of treatment. I can't adequately express to you how huge that decision is. It's not hyperbole to say that it carries with it consequences that could result in life or death. What is hyperbole is my prior assertion that the decision was made in 30 minutes.

Formulating Opinions on Treatment

In truth, the seeds of this decision were planted before Tamara even started chemotherapy. She has been keenly aware since her diagnosis that chemo drugs are poison to be avoided if at all possible. In the beginning we were staring down the barrel of stage 3 cancer and had to move quickly to start fighting back. If our hopes are confirmed, that the cancer didn't spread to any lymph nodes, I will count it as a legitimate miracle. I think we were close to being too late.

But as the effects of the Taxol, carboplatin and Keytruda began to manifest; as she has done more research into what these drugs do, as she has had time to consider her options; Tamara began to see that the regimen we began was probably not her best option.

On the one hand, the Taxol and carboplatin have worked. One of the effects has been the shrinking of the tumor. We're very grateful for that particular effect. Some of the other effects have included hair loss, nausea, bone pain, a general degradation of health, financial strain, etc. Taxol is also known to increase the risk of heart problems, and nerve damage (neuropathy). Keytruda also has played a positive role, but comes with similar risks to the heart, and the rest of the body. So, while the tumor has shrunk, Tamara's system has undoubtedly paid a price; a price which will remain largely unknown for an undetermined period of time.

All of these side effects are well-known and you can find all of this information on cancer.gov - a fairly reputable source. There are also tons of influencers, bloggers, and forum participants who offer inconceivable amounts of information. It all gets pretty confusing. In the weeks leading up to today, Tamara has approached me with various tidbits of information and I've never really known what to say. I'm no doctor. I got a C in BIO 100 at ASU. I'm not qualified to give medical advice.

Over the holiday break, as Tamara was supposed to be enjoying the break from chemo, she approached me with a few facts about doxorubicin that she had somehow encountered. Knowing that she would start receiving that particular drug in just a couple weeks, I started to pry into her intentions. "Are you just venting about something you're worried about? Or are you wanting to do something about this?"

At the end of the day, Tamara is of sound mind, has more medical training than I have, and is in charge of her own healthcare decisions. I'm pretty good with confrontation when I need to be, so I have no problem going lacing up the gloves and getting into it with the doctors. I just need to know what my talking points are. I told her that if we are going to argue with doctors, we had better have some ammunition. Influencers and cancer.gov probably wouldn't cut it.

She took that to heart and secured for herself access to a medical library full of peer-reviewed articles & research. She found a lot of really useful information. Doxorubicin is associated with:

• High risk of heart failure (i.e. congestive heart failure, cardio myopathy, etc.). And the onset of symptoms can manifest anywhere from 14 days to 7  years after the first dose.
• High risk of neuropathy
• Leukemia
• Bone marrow suppression

We already knew that Taxol and Keytruda came with cardio toxicity and neuropathy. In fact, Tamara has already felt some neuropathy. Probably my fault for falling asleep during her last treatment, instead of helping her use the ice mittens and booties. (Okay, probably not my fault, but man I feel bad about that.)

Looking down that list of side effects, and knowing that we've already done damage, we had to ask if all of this would be worth it. 

• If we nuke the cancer, but also nuke Tamara's quality of life and life expectancy, what's the point?
• Are we really planning to stack 5 cardiotoxic treatments (Taxol, carboplatin, doxorubicin, Keytruda, radiation) on top of each other and expecting her heart to last until she has grandchildren?
• If she ends up with more-than-mild neuropathy, do we really want her to be on gabapentin (also cardiotoxic) for the rest of her life?
• The tumor has shrunk significantly. The doctors have told us that they want to achieve complete pathologic remission prior to surgery. But the only way to be sure that the breast tissue is cancer free is to analyze the tissue post-surgery. So, how can we possibly know pre-surgery whether or not we've achieved complete pathologic remission?
• And why are we adding more cardiotoxic drugs into her system, when we don't even know how much cancer is left in her body?
• We've been told that we don't want TNBC (triple negative breast cancer) to come back, because when it does, it comes back more aggressive and may not respond well to chemo. If we expose her body to more varieties of chemo, will the cancer be more resistant to them if it comes back?
• We have no reason to believe that there is any cancer outside the one breast. Is the risk of failing to nuke a hypothetical cancer worse than the risk associated with administering 6 cardiotoxic drugs?
• And if this red dye of death ends up causing leukemia, what the bleepity-bleep are we doing?!

Looking over all of that information together, and armed with a few peer-reviewed articles from medical journals, we felt like we had some very valid points that the oncology team had to take seriously.

Decision Dress Rehearsal

On Monday, the 6th, we met with a PA, who was filling in for the NP, who was filling in for the main oncologist. Tamara told her she had concerns about the next phase of chemo and was considering skipping straight to surgery. Tis poor PA then fielded our barrage of questions and she did her best to not commit to anything, while showing sympathy and answering our questions.

She also made sure that we scheduled an appointment with our main oncologist - whom we hadn't seen in a couple of months. If you ever get tired of seeing PAs and NPs ... just tell them that you don't want to follow the treatment regimen. Turns out, squeaky wheels do tend to get more grease. With that appointment done, we moved on to an uneventful infusion, and then went home.

Not much happened between that appointment and the one yesterday that is worthy of remark. I will say that a couple of the kids started sports again. Evan started flag football and Nathan started soccer. How we're going to make that work is anybody's guess. But we will ... we always do.

So, a busy week full of sports and a few bouts of Catan passed and yesterday finally arrived. We were scheduled to meet with the main oncologist and weren't quite sure what to expect. She had been adamant at the outset that this treatment regimen was the best thing available - using hours of her time to get us on board. We were expecting that same kind of fervor from her in defense of continuing this regimen.

Breaking the News to the Doctor

To our surprise, when she walked into the examination room at 4:15pm, one of the first questions she asked was something like, "Where are you on this regimen? Have you already made up your minds, or do I get a say?" That sounds sarcastic, but it was actually received in good humor - it was pretty funny.

I responded to that question with an equally cheeky response - something to the effect of "Of course you have a say. We have questions, but we're not oncologists." Both sides having established that we're opinionated but open to discussion, Tamara began to outline our concerns, opinions and questions. The doctor listened intently and answered our questions as clearly as she could, writing notes for us to take home as she spoke (a habit of hers for which I've become very grateful).

Adding to our surprise, she seemed to validate our concerns with anecdotes of her own. She described one case in which an anonymous patient of hers in the past actually succumbed to hearth failure - likely attributable to the chemo treatment. She admitted without hesitation that she doesn't have a crystal ball and that it's possible that Tamara could be that one unlucky patient that experiences heart failure with just 1 treatment of Doxorubicin. It's uncommon for something like that happens, but it's possible.

She was very forthcoming about the risks, and at one point even agreed with Tamara's assertion that "it's a gamble either way." She said that they (I don't know who "they" are) like to try and fit all the TNBC patients into this regimen, when the reality is that many aren't able to complete all the treatments. Some people's bodies just can't handle it. Every patient is different, even those with the same diagnosis, and sometimes the statistics don't apply. I, personally, think Tamara could have handled it. But "can" and "should" are two different things. Having established that, we moved into some really meaty territory.

Decision Points

We didn't know this until yesterday, but the oncologist also said that while its true that this regimen is statistically the best available for BRCA  1+ triple negative breast cancer, only 60% of patients who go through it achieve complete pathologic remission prior to surgery. So, we have a pretty high likelihood of needing additional chemo treatment AND radiation post-surgery. This was the point at which Tamara had decided she didn't want the Doxorubicin.

• If we do the double mastectomy and it is determined that we've achieved full pathologic remission (i.e. there is no cancer remaining in the tissue), Tamara would still need 9 more treatments of Keytruda.
• If we do the double mastectomy and active cancer is still found in the removed tissue, Tamara will still need chemo post-surgery. The chemo drug she'd be given in that scenario is called Olaparib. It comes in pills and would need to be taken for a year. She would also need radiation.

That was a pretty startling revelation, because it would mean we'd be introducing yet another cardiotoxic drug into the cocktail that was already planned. Yikes. And after discussing the likelihood that Olaparib might be necessary post-surgery, the oncologist was comfortable with the option of skipping Doxorubicin. Olaparib is actually intended for BRCA 1+ patients with TNBC. If Tamara was BRCA 1 negative, the Olaparib wouldn't be the best option. The oncologist didn't explicitly recommend that we skip Doxorubicin, but because we have a back-up treatment option that is specific to BRCA 1+ patients, the risk calculation for skipping Doxorubicin made sense to all of us.  At this point, we were already feeling pretty good about moving straight to surgery. But the doctor still had one more gem to reveal.

Apparently, the remaining tumor that we so-happily reported to be measuring 1.8 cm two weeks ago could ... COULD ... just be scar tissue. Yep. there is a decent chance that the almost undiscernible mass we saw in the mammogram could be nothing. We may already have achieved pathological remission with two Taxol treatments remaining. WHAT.

You can imagine the questions that flooded our minds when we heard that. "So ... why are we going scorched earth if we're not even sure that Napoleon still has an army?" This was the point at which I jumped off the Doxorubicin train completely.

Tamara's Path Forward

With all of that said, we're happy to report that the surgical wheels are moving. As we were leaving the appointment, we were told to expect a call from the surgical oncologist sometime in the next couple days. We got that call this morning and the consultation is scheduled for Thursday, Jan 23. Our oncologist said that she'd like to see the surgery happen within 3 weeks, so things could move pretty fast. Luckily, Mr. Bueller has prepared us for these kinds of rapid changes.

This will be a major surgery and an intense recovery. We know people who have been through it, and it doesn't look fun. There are still decisions to be made and none of them are easy. But we are over the moon that yesterday just may have been Tamara's last chemotherapy infusion. May the red dye of death forever be nothing more than a memory of potential dread. We're movin' on. 

What we need from you lovely people is prayers. Most of our network of support consists of religious people who believe in prayer. If you don't fall into that camp, we'd love for you to send Tamara your positive thoughts. Visualization is powerful - even if a deity is not the conduit of healing you envision. Whatever your preferred delivery system for good vibes, the result we're trying to manifest is complete pathologic remission. If we do this surgery and don't find anymore cancer, Tamara is done with chemo. So, we invite you to pray that the surgery will be successful and that the cancer is gone prior to it.

Your support and generosity continues to astound us. We can't thank you enough nor adequately express our love for you. Tamara's Tribe really is the best.

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Holiday Magic Wins

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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