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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