Category: Tori’s Wisdom

Limbo

Limbo

Brian’s treatment ended Monday. I’m sure y’all expected to hear from one of us about how excited we are about closing the chemoradiation chapter, popping the champagne.

Honestly, that’s not where we are. His fight didn’t just abruptly end, side effects disappear. As I write, he’s taking a nap in the bedroom. 

When healthy, the man doesn’t do naps. Not a nap guy. While I see progress in his health, it’s very slow. He sits up more. He did an evening pickup of Ella from percussion practice this week. He’s going to bed a bit later. Small steps. 

Limbo, I’d say that’s where we are. The worst of the treatment over, but we don’t know when this will end. This isn’t some project on a timetable. We really don’t know where we are. We see Brian getting a bit stronger, but we also see his skin scabbing over, front and back, where the radiation targeted. Continuing extreme fatigue. Uncertainty regarding when he’ll get back to the office, especially since it’s a large campus so there’s a lot of walking, not to mention sick people milling around since it’s a public facility. We know Brian’s immune system is still compromised, but not to what extent, and don’t have plans to test it. 

Sometime in May Brian will have PET and brain scans so we can see how effective treatment worked/if anything new is found. Like so much of this journey, inflammation takes it sweet time to subside, so new scans can’t be taken until 90 days after treatment. We have no idea what would happen if there was lingering cancer and no reason to ask. We’re taking life day by day. 

Immunotherapy will begin soon, with fewer, if any, side effects anticipated, but there’s no guarantee there either. 

I may sound negative, but this is where we are. You can’t plot it on a map. It’s all wait and see. We’ve made the best choices we could in doctors and have had luxuries others going through this don’t have, like loads of sick time, jobs that have been extremely supportive, friends who’ve come out of the woodwork to send helpful gifts and check on us. 

How lucky we are to have you on this journey with us.

I’ve mentioned a number of times that we’re in our first year of marriage. Our first Christmas while we were dating I bought a Christmas ornament and had it personalized with our names. It’s a man and woman on a rollercoaster (yes, it’s very cheesy). I told Brian when we started dating to buckle in, because for reasons I’ve had little control over, I tend to lead quite a wild ride of a life. 2019 lived up to that expectation in many ways. While we did get married some random day I don’t remember during our lunch breaks (which, in retrospect, was a very lucky spontaneous choice that’s simplified the cancer journey), we never got our footing or a routine developed as a couple. I’ve learned a lot about Whaley, because significant illness can bring up the unexpected, on the fly. I suppose some things you only learn in dire circumstances, when stress and bandwidth are tested, when health is failing. 

This is the For Better or Worse, In Sickness and In Health portion of the program. Just wasn’t expecting it so soon.

Oxygen

Oxygen

I’m not a huge Billy Joel fan. Meh.

Over the last month there’s been a song stuck in my head, and it’s by him. Luckily, it’s not one I hate.

I was a senior in high school when I asked for his record for Christmas. It definitely stuck out in the rest of my new wave, alternative collection. I wanted it because I thought I was living my best life, and the song expressed how I felt.

The chorus rang,

These are the times to remember, ‘cause they will not last forever; These are the days to hold onto and we won’t although we’ll want to; These are the times, but times are gonna change…

Coiled up in those last few words of the chorus are the times we’re rolling through. The times you can’t define until they appear, but you know you’re not in Kansas anymore.

The cumulative effect of Brian’s treatment has rendered him at times, a ghost of himself. So I’ve been waiting, always waiting for the worst (chemoradiation) to be over. At least I was until Brian made an off-handed comment a week ago. I was saying something about what we could do once he felt better, and he looked at me with sincerity and said, “I may not get better than this. This may be as good as it gets. This might be it.” I immediately rebuffed his comments, but he casually said that it was just reality.

Like it or not, this is real life.

I thought about his comment all week, but took action within 48 hours. A light went off. I was exhausted and needed a break, something I couldn’t admit until that moment. I booked a flight to Florida for the upcoming weekend to see a bestie and recharge my battery. I went somewhere where, for 48 hours, I would be taken care of.

So I had an adventure. It was Gasparilla weekend, a Mardi Gras type festival on the water in Tampa, which meant I flew to and from DFW with people dressed as pirates. I went to the Wizarding World of Harry Potter solo, immersing myself in a land I’d been reading about for most of Brian’s treatment (I’m on book four). Reading has been an opportunity to occasionally breathe in a magical land where evil lurks, but an overarching hope saturates the pages. I was even part of a marriage proposal where the groom-to-be dressed in a Spider-Man outfit (you can’t make stuff like this up). I held sign five of six, leading the unsuspecting woman to the proposal sight.

Suddenly I was recharged and smiling.

Brian’s words regarding his diagnosis reminded me of what I already knew, but was rejecting – life comes with no guarantees. Prioritize. Even though we’re going through something unsavory, appreciate what you can along the way and take time for yourself.

On the plane back it was obvious that prioritizing myself was in our best interest. Because being a good caregiver isn’t overextending yourself to exhaustion. To be a good caregiver, you have to put the oxygen mask on yourself first.

Joy

Joy

Let’s be real about this. 

While there are only two weeks left of treatment, cancer has consumed our lives since it came to light. I have felt every awful, putrid, gut wrenching emotion a spouse can feel. And while there are not-so-awful days, none of them feel like the life we left behind on That November Day. And as the doctors told us, the further Brian gets into treatment, the worse he feels. 

How do you find joy during times like these? I’ve felt bad knowing Brian was at home in bed. Not even because I was doing something amazing, but just because I had the luxury of being out of the house. Not having a needle in my arm or pain in my body. 

Sometimes it feels like I’m just waiting. Waiting for treatment to end. Waiting for Brian to feel up to a conversation. Waiting to know what our future holds. 

Joy seems beyond the horizon. 

But I do remember how amazing joy feels. I was grocery shopping at Central Market and came across some dark chocolate covered caramels. I remember the last time I ate that exact type. It was one of the first times I stepped into this house I’ve lived in for almost a year now. Brian had cooked for me. After dinner I wanted something sweet and he pulled them out of the pantry. I remember how the rock salt combined with the dark chocolate was an indulgent combination. How the caramel was no too hard, not too gooey. I remember that by then we were talking about getting my house ready to sell and I was getting to know the dogs, find a job. I remember how strongly I knew Brian was my forever. 

I remember how joyful we were. 

Now it’s our house. Our pantry. Our dogs. Our life. 

I think maybe we were supposed to be together so I could take care of him during this time, although he’s taken care of me during the year as well. Maybe it was so I would never forget that moments shared are more than ticks on the clock. To savor joy. To love fiercely. To not let quality moments slip by because we’re too busy. 

During that grocery run, of course I grabbed a container of caramels and dropped it in my cart. That first bite later in the evening took me back to that extraordinarily ordinary night. A time of true joy. 

I’m looking forward to many more together.  

Front Row seat

Front Row seat

I think it’s hard for anyone who knows Brian to truly understand how bad he is feeling. 

He doesn’t complain. Text him or see his comments on FB and he’s just Whaley. This week he even took the doctor’s advice and fought the pain and fatigue with some household activity, doing chores. 

I don’t ask him how he feels anymore. While I’d like a detailed update so I can do everything I can to help, he’s mum – doesn’t want to focus on it. So unless a new symptom gets out of control, I don’t necessarily know what symptoms are. 

I do understand Brian’s desire to just plow through it, not give the negative aspects much thought. He sees doctors and gets blood drawn weekly, so we generally know how he’s doing. 

I don’t know what I expected. What it would be like for Brian to have a chemo needle stuck in his arm weekly. Have a radiation machine whirl around him 30 days. I’d say it’s probably stuff we’ll discuss once it’s over.

What I do know is, as a front row spectator, the way Brian is handling this is an impressive lesson in fortitude.

  • Focus on the goal
  • No lamenting the journey – that’s energy wasted
  • Do what’s required to reach your goal with a stiff upper lip
  • Make time for family
  • Be realistic regarding progress  
  • Rest as necessary 
  • Expect setbacks, but don’t let them change your belief in achieving your goal
  • Stay on course

None of this is easy. For any of us. We’ve now had the Holidays and Ella’s 17th  birthday in the thick of treatment.

But Brian saves his best, most energetic self, for us. For a few minutes/hours each day, he’s himself. Is he feeling better during these times? Maybe. But it’s all part of his plan. 

Brenè Brown would understand

Brenè Brown would understand

Dare I say this was a better week? 

After speaking with the chemotherapy oncologist, she thinks Brian may have had a slight illness/infection week one because of the fever and extreme exhaustion. Because this week Brian has been tired, but still present. Still had some energy. Wasn’t in bed 24/7. 

Whatever week one was, I hope it was an anomaly. 

With Brian feeling a bit better, I’d say the effects of cancer on the rest of the family blazed front and center. 

Initially, Brian was miserable and seriously on a limited word/thought count. There were a lot of things left unsaid about what was happening that week and those upcoming. There were lack of communication issues and process questions I had about keeping life rolling for Ella and I. There were things I didn’t know I was mad about until a parallel issues was raised. 

I felt a lot of guilt. I didn’t want him to know about my frustrations. Usher in negative energy. Sound incompetent. 

When you are the caregiver, you want to make everything easier, no matter how hard it is on you personally. So I felt I crossed a line when my emotions boiled over with things I hadn’t told my husband. Up until this point, I always told him what was on my mind. Now, all of a sudden, I’m holding onto frustrations/concerns, wanting him to focus on healing and surrounded by positive energy.  

It felt like I was failing my family by talking about an issue I couldn’t solve alone. I felt shame. 

I’m in my first year in this family. Ella is a junior and how we proceed parenting her during this time needs to be Brian’s lead. I’m a parent. I know what to do. But Ella is a wonderful kid that’s never been parented by a personality like mine and I’ve not had a teen like her (well, my sweet son and Ella are quite a bit alike, but also very different). 

So this week was difficult as we worked though what happened when he was down and how we go forward. How I communicate with him even on his horrible days. How I can’t shelter him from everyday life. What I can do for myself to relax and recharge without feeling guilty. Brian always advocates for me to get out of the house, but my tribe is in Dallas. I’m already tired. So how much do I want to recharge with my people, versus lay down on the couch or go swim, the pool being my sacred place. 

Realities: 

  • Brian just completed his third chemotherapy. Hopefully he reacts the same as last week. 
  • He has 19 more of 30 rads, completing this phase of treatment on January 31. 
  • Radiation side effects are beginning, so we don’t know what all will be involved. For now he’s referring to it as his throat being sunburnt, with some  difficulty swallowing and heartburn type symptoms. A magic medication is on the way Monday. 
  • Just three chemos left!

With all of this in mind, I’m moving forward knowing I’m not perfect. I will never live up to my outrageous personal expectations. But I’ll keep communicating, we’ll do this together. And that is enough.

Loneliness – Caregiver side

Loneliness – Caregiver side

I’m a bit lonely. It’s interesting that Brian touched on this because I feel it too. Right now I’m working extra hours to make up for doctor visits I take off for. So I’m tired. Then I come home and really want to spend time with Brian. I thought initially we’d watch tv together. 

That’s not reality. Brian actually feels so bad, he prefers to be on his own quite a bit. He’s sleeping on and off. His body hurts. He doesn’t have the energy for conversation. He is looking to get rid of the dogs for a bit. The only way that happens is if I sit in the living room with them. 

So I spend a lot of time alone. 

I don’t want to leave or go work out because Brian needs things and is honestly too weak certain days to make his dinner. Get more water. Medicine. Every day a new symptom creeps up and needs to be addressed. 

So I’m sitting in the living room on call. Brian does not want this. I don’t want this. But it’s reality. Maybe if he wasn’t watching this awful Dr. Who marathon since Christmas (please make it stop), I would sit in there a bit more. But while it’s lonely for us both, healing is a solo journey. I go to a few appointments. He’s the one driving back and forth to Dallas five days a week. He’s the one with bruised arms and hands from weekly blood draws and chemotherapy. 

 I have no idea when this will end. Is Brian going to start feeling better after six weeks of treatment, when he’s down to one lung and a burnt bronchial tube? If we don’t know the answer, and we don’t, then there is no timeline on his health. Or our isolation. 

We’re kinda on quarantine. No one can come over. I’m a bit manic about staying healthy, switching my clothes and washing hands before I even go near him when I get home. Making sure Ella does the same when school starts again.

If you’re sick, don’t even call me. 

On that note, I prefer to not talk much to friends or coworkers. I don’t want to keep talking about cancer, and I have nothing else going on. Sometimes I do need to talk about cancer. But I do it on my own schedule, and appreciate people who treat me like normal. Some people, when they see me, they have the pity look. The sadness in their eyes. It’s very well intentioned and appreciated, but it reminds me how hard this is.

And I’m not even the patient. 

He’s back

He’s back

I wasn’t sure if I was going to see my Brian again. I wondered what this treatment was doing. 

But today, my Brian was back. The sparkle in his eye. The cadence of voice. Robust sarcasm. 

He’s still tired and spending more time in bed, but he’s here. 

When you’ve never seen someone go through cancer treatment up close, much less chemoradiation therapy, you don’t know what getting better looks like. 

Death. It looks like steps towards death, not healing. It’s cruel and has a ferocious bite to it, thwarting the opportunity to do much other than survive. The days after treatment can be horrible to watch. 

The only thing I can modestly compare it to is when my son fractured his wrist in 7th grade. We were at the hospital the week after the incident and they were applying his cast. I took a picture. He had a huge smile. The second after I snapped the shot, this technician took the fractured area with both of his hands and quickly twisted the wrist back into place. It was such a shock to us both. No one told us it needed to be reset or what that meant. 

It was better not to know. There was no dread. No anxiety over something that must be done. 

Cancer treatment is the same. If you had any inclination how horrific it would be, it wouldn’t help. Treatment begins too quickly to train for it, build up your body.

Brian called it the quadruple flu. That might be the best explanation. And it’s not the vomit type flu. It’s the one that you think might be a cold and then there’s fever and next is bedridden for days. That flu, times four.

After radiation Thursday we saw Brian’s radiation oncologist. While there is no normal reaction to treatment, all of the symptoms Brian had during the week related back to chemo. Which was good news, sort of. 

Chemo was just 24 hours away. So today, we enjoy normality, content not knowing what tomorrow will bring. 

Ho ho no

Ho ho no

We started this blog because we wanted to keep friends apprised of the situation and to someday hashtag it to help others. I’d say this post is dedicated to those searching for what it’s like to go through aggressive chemoradiation or be the caregiver. 

Brian has felt awful since the 22nd. After his fifth treatment the 23rd, he retired to bed where he has primarily stayed since. He downgraded from awful to miserable with a constant low-grade fever. He’s wanted to be alone, not even with the dogs (they want to jump on him or play). I think this is the chemo side effects. We will find out if his bad chemo days are four through six, as it appears now. Chemotherapy is Friday this week. We also see his radiation doctor tomorrow after treatment, so maybe we can hash some of these symptoms out and get them under control.

Back to Christmas. Both of our kids are with their other parent today, so December 24 was supposed to be our Christmas Spectacular. I had planned on cooking, family dining, then opening gifts. Playing a game after that sounded like a good plan. All low key. 

But that was before Miserable Brian. 

Christmas Eve I saw the new Star Wars movie with Rylan, a long standing tradition of ours. I also got Brian grocery supplies, drew a bath, refilled his glass with chilled water regularly, brought and removed meals, kept the dogs away, took his temperature and put my cold hands on his head for some relief among other things. Most of the rest of the time I was alone, trying to figure out how to do our first holiday as a blended family and looking at our nine foot Christmas tree, realizing how much work it’s going to be to put away. 

Our festivities ended up being a tbd gift opening session, with Brian attempting to muster the energy, but his body unwilling to cooperate. There would be no family meal. No games. Simply hope that Brian would appear. 

Finally, around 7:30, he emerged and said ‘let’s do this now,’ so I rushed to get the kids out of their rooms and hastily distributed glitter-wrapped packages. Part way through, Brian was waning and needed the pace picked up, so I had multiple people opening presents at once. Gifts that would’ve been funny in a different situation were passed over to open the next. It was rushed. A blur. But checked off the Holiday list. 

We knocked it out in less than 10 minutes and Brian promptly retired to his quarters, exhausted. 

With the hurriedness came a living room that was a gift wrap explosion. The kids helped me pick up before dashing off to their respective rooms. I decided to start the laundry Brian had sorted over the weekend but never felt well enough to do. He loathes the idea of me doing laundry. I have very loose rules compared to Brian’s regiment about loads and folding, so when I told him what I was doing and he had no comment, I was glad I did.

It gave me free reign to take over daily duties that were his. I think that’s where the new marriage thing comes into play, not knowing certain boundaries. I continued on, cleaning the kitchen while watching Harry Potter for the 100th time. All the while hearing my husband’s unrelenting hack and cough, trying to rid himself of something that won’t budge that easily. 

None of this is said to garner sympathy or elicit assistance; I’m simply being real. This is what cancer looks like. This is the life of a caregiver. And I wouldn’t want to be anywhere other than right here, right now.

These last few days, Brian has looked like Cancer’s prey, and we’ve only hit day five of 30. However, his low-grade fever finally broke overnight and he went back to awful from miserable. Yay! Yet the reality is that his two day hiatus from treatment is over, and we have two radiations and a chemo over the next 48 hours.  

I’ve always known treatment would break my husband down in order to build him back up. Now I have a glimpse of what it looks like. 

All I want for Christmas is an accurate thermometer

All I want for Christmas is an accurate thermometer

WARNING: Soapbox post ahead

Thermometers are stupid. 

I never thought I’d yearn for the efficiency of a good thermometer. Remember a few years ago, you’d tuck it beneath your tongue and it would take a bit, but an accurate reading would eventualize? 

That no longer exists. 

Thermometers are something technology has ruined. They seem to work great when the nurse waves it across your head at the doctor (the $200 version), but it’s crap at home. Although I will say that a nurse waved it behind my ear, saying it sometimes is more accurate there because it’s an area not so exposed, so even theirs is not full proof. 

We own three thermometers. THREE. Because each one failed us at one point or another. Our Kroger brand forehead thermometer has zero accuracy and instructions say to not place it on the skin, yet how far away do you wave it around the curvature of the forehead to get an accurate read? 

An ear thermometer seemed like an upgrade, but we didn’t realize it can only be used on the buddy system; the counterpart tugging on your ear and precisely guiding the instrument. Said buddy then pulls the trigger, which sounds akin to a nerf gun firing. This method is somewhat more reliable, but all options are prone to supply wildly different results if attempted multiple times in succession. 

So I decided to go old school, the under the tongue variety, when I had the flu at the beginning of November. Unfortunately, the 2019 version is inferior to the version I wanted – it takes literally one second to ding and spit out your temp. Seriously? You haven’t even shut your mouth yet. Your tongue has barely secured the device. If you try to wait until it’s securely in the correct placement, you can’t seem to click the button correctly to get it to work.

Who puts this crap on the market? How in the world do scientists think any of these devices actually work? Did anyone run trials allowing actual humans to give it a go? 

This is a device only used in times of illness, sometimes severe. We don’t tend to use them when we feel well. Does any manufacture realize that when we need it, it’s because something is wrong and preciseness is key?

It’s almost 2020 and you can’t find a reliable thermometer at the grocery store or CVS next to checkout.

This is not a rally cry to go back to mercury or stick it where the sun don’t shine. But seriously, I’ve got plenty of other things on my plate. I don’t want to worry about thermometers. 

And this would be a frustrating but not irritating, somewhat scary situation, if Brian didn’t have cancer. When going through treatment, any temperature 100.5 or higher requires a call to the doctor, no matter the time or day, so accuracy is vital. If it’s an after hours fever, a hospital visit may be necessary. 

So tonight we sat with all three sprawled out of the bed, using each multiple times. None of them replicated it’s own or the other thermometers’ readings. 

At radiation this morning we spoke for awhile with the nurse because Brian had potentially 100.5 last night, but it was hard to tell. We spoke to the doctor on call the night before radiation and he said he would have normally sent us to the emergency room, but we had an 8:30 appointment this morning and it would have taken us that long to go through the hospital process. He said to just talk to the staff today. 

By this morning the fever was gone and the conversation short.

So after today’s appointment, I scoured Amazon and bought the best reviewed thermometer I could find, which makes me feel better that tomorrow there hopefully will be one less thing to worry about. 

P.S. We received it Christmas Eve and it is a solid product being put to use multiple times daily. It really was the best present I could receive Right now: A little peace of mind.

Ch-Ch-Ch-Changes

Ch-Ch-Ch-Changes

Fourth radiation in the books. What does that mean for me? 

Well I’ve been cleaning a lot more. 

My husband enjoys cooking, laundry, cleaning, and general puttering around the house. As a single mom for 20 years, everything was my responsibility. So moving in with Brian was a beautiful thing. In 2019 I’ve been a princess, doing a few chores here and there when I felt like it. I loved Every. Single. Minute. 

With the Princess lifestyle comes the reality of not knowing where the broom is stored(our roomba runs nightly). I don’t know what setting Brian washes his shirts on (he has a serious system). I don’t know where random paperwork left on the kitchen island should land. 

I feel like having less than a year of marriage under my belt doesn’t qualify me to run this household. At least not to my standards. 

So with my husband retired to our bed this weekend, I’ve been doing my best to keep the house moving while trying not to overwhelm myself with regular and holiday duties. 

It’s hard. It’s hard hearing your husband cough and clear his throat regularly, knowing it’s an unsavory intruder. It’s hard not spending that time with him while he rests and recovers. And I’m not feeling the holiday vibes, although I’ll be glad to see Rylan. 

I suppose some of you aren’t familiar with our kids. Each was raised as an only child, so sharing space when Rylan does come home has been a bit awkward for them because of their ages. Ry is 21, attends St. Edwards University in Austin and is majoring in video game design. He lives in Austin full time and works at the original Taco Joint on South Congress. Ella is almost 17, a high school junior and lives with us full time. She plays bass drum in band and is the most chill teenage girl I’ve ever encountered. I’d say Rylan is a self-proclaimed geek of the dungeon and dragons/video game variety. 

We had a nice first-time-ever blended Thanksgiving. I’m expecting the same for Christmas, but how Brian will feel is tbd. So far Brian seems to primarily just be fatigued. No nausea or other side effects. And he’s eating. All of this is very good. 

Hope that’s where we are at number 30.

The Predictability of the Unpredictable

The Predictability of the Unpredictable

Concerned he wouldn’t feel well enough to drive home from Dallas, I really, really wanted to tag along today. 

Believe me, I tried to convince Brian that I should there. But the only person more stubborn than me is my husband. He thinks I should save my vacation days for later, if he needs me then. I don’t have FMLA, but the foundation I work for is very considerate  and flexible with our situation. My CEO’s husband had cancer a few years back, so she’s well aware of the unpredictability.

So anyway, I was not invited to his Day ‘O Treatment. Chemotherapy began at 9 and radiation at 4:30. Sounded like a loooong day. Sounded unpredictable. Both therapies in Dallas. Off he went. 

Brian had the idea he would have four hours in between appointments, so he’d just drive home for awhile. Sounded doubtful to me, but it’s not my rodeo.

Yeah, his plans did not come to fruition. 

The unpredictability of treatment, it’s the only thing you can count on. Whether it be changing appointment times, how medications are administered or how Brian reacts to each med. We have no idea what’s coming.

So I need to loosen up. Go with the flow. But what exactly is the flow of your sick loved one? Are you in the mood to relax? It feels urgent to me. It feels pressing. But I am trying my best to be laid back. 

And I hate it. This aspect makes me uncomfortable. I want a predictable schedule. That’s where I do my best work. I want to prepare, research, just know what the hell I’m doing to take care of my husband. I want to be assured that this course of treatment will work. 

But all of these certainties/answers are luxuries I will have to live without.

While it was a very long day and he never made it home for a break, Brian was home around 7:00. Obviously fatigued, he made it through fine, and I’m sure he’s expounded on some of those experiences on his side of the site. 

I will probably always worry more than necessary. Honestly I hope that’s the case. That Brian responds well to treatment and we do what’s scheduled and need nothing more. How lovely that would be. 

But one of the reasons chemo took so long today was because he didn’t respond well to one of the meds. 

You learn so much about an unfamiliar topic when confronted. I had no idea cancer patients receive an intravenous mix of Benadryl and anti-nausea meds prior to the actual chemo meds. So when Brian began to feel not so good a little while after the actual chemotherapy began, they backtracked to more intravenous Benadryl; when chemo began again, they slowed down the drip. 

Maybe I should slow down too.

Warriors

Warriors


I woke up to a barking dog this morning. 

We have three dogs, and each has a way of telling me they need to go outside at night. So I looked around the room and realized all were sleeping. It was actually Brian’s cancer cough, which has been slowly evolving. It used to sound like a plain old cough at night. Wheezing unveiled itself a few weeks ago. This morning was the first bark. 

New this week is a painkiller for his back pain (cancer related) before bed and an overall pain/heaviness when he bends or leans. Laying down is the most trying position of all. None of it is severe, just uncomfortable and constant. It’s enough to know he’s been invaded. That a battle is about to go down. 

Wednesday is Day One of 30 radiation treatments. Five days a week, six weeks. Thursday is dose one of six chemo treatments over the same six weeks. Immunotherapy is the final step, occurring every three weeks for a year.

I love that we have an amazing team of physicians. I hate that all 30 radiation sessions are in Dallas. Brian’s first chemo is in Dallas, the rest in Fort Worth. 

The expectation is that Brian will drive himself to all appointments. 

Simply thinking about the drive exhausts me. And he’ll be working. Luckily, he’s worked at The Kimbell for almost 16 years and has two months of time off stocked up. His staff can function independently if necessary. 

Kimbell Christmas party December 12. We have fun.

It was fun meeting them this past week at Brian’s Christmas party. He received his 15 year service award. It was a nice night that I don’t take for granted. 

From here on out there will be pretreatment, in treatment and post treatment life. 

I’ve heard the cancer journey changes everything. I know people who’ve taken the cancer journey. I apologize right now to all of them for my lack of understanding and, therefore, lack of compassion. 

Because no one with cancer complains much. Talk about their symptoms. Dwell on the situation. I know now, from some of them, it’s because in order to survive, positivity is key. Keeping your chin up. 

But when I’ve asked about their treatment side effects, I got answers like, ‘my skin blistered and fell off,’ ‘my fingernails popped off,’ and ‘I could feel the burning inside my body.’ Then there were the flu-like, can’t get out of bed, hope tomorrow is better days. 

Now I know what warriors cancer survivors are; I already see these traits in my husband. He’s stubborn. Tenacious. A fighter. And he’s ready to kick some @ss. 

Finding Optimism When Overwhelmed

Finding Optimism When Overwhelmed

Hospitals. No one is here because they want to be here. Even the nurses and doctors would prefer cures over patients. You see the spectrum. Seemingly healthy like Brian, sick, frail, and of course, caregivers. 

All represented.

This morning we are here for the PET scan results. We take separate cars so we can go straight to work afterwards. I don’t perform my due diligence and end up at the wrong address for the appointment. I’m panicked because if there is bad news I don’t want Brian to be alone. Ultimately, I get to the office before him because he is waiting at the other valet for me. Brian knows I wanted Team Whaley to walk through the door. In these tough spots, we have become a united front. He likes the Team Whaley thing until I write it on the bathroom mirror, want to make it a shirt or hashtag or something. It may be a bit much, but he knows who he married.

Reassuringly, the PET scan is clear; our final hurdle. There is a small area they may choose to take a further look at, but it seems precautionary. His stenosis, the diagnosis that got in the way of us finding this sooner, is also affirmed. Even hearing the word is irritating. Had the MRI (done right above the mass) not shown stenosis, they would’ve kept searching for a diagnosis. 

Stage IIIa, here we go. 

We move on to the next appointment across campus for a radiology simulation. I sit in the waiting area, writing this while people watching. We are all here for the same reason. We are all doing the best we can. I Love Lucy is on the tv. As we’ve seen, most patients are 10+ years older than we are. 

That evening, Brian is freshly tatted up, marks directing radiologists where to shoot the poison (do you shoot radiation? I suppose I’ll find out). We were told they would be dots the size of a pencil tip. Uuummmmm, not so much. He had two inch crosses, deep green lines in four places, two of them down the center of his chest. I didn’t even know what to think about that so I said nothing.

I don’t know how to think about any of this. Except this one thing. One message received this evening that I wasn’t expecting. 

We are watching This Is Us from the beginning. I was caught up to the current season, but Brian has never seen it. So we are on season one. Episode 12. It’s the birth of the triplets and subsequent loss of one of the babies. Rebecca, the mom, is in a drugged sleep, recovering from the intrusive deliveries. Jack, her husband, is in a state of disbelief and pain. But Jack also knows he has to tell Rebecca a child didn’t make it. 

Dr. K sees the trouble in Jack, the father, and sits down with him. The doctor shares how he and his wife lost their first child. He tells Jack that the only way to get through the tough times like these is to ‘take the sourest of lemons and make lemonade.’ Then you see the healing begin for them all. 

I needed to hear that message tonight. 

Mercifully, the green marks wash off,  just the dots we were told of remain. And mercifully, I now have better perspective. 

Spousal Anxiety During Staging

Spousal Anxiety During Staging

Just another Tuesday. 

Everyone at work is on task. I’m busy. Holiday lights abound. The flowers Brian bought me for our anniversary are beautiful but waning. 

And Brian got his PET scan today. 

You hear about the steps and tests that it takes to diagnose disease, but really have no idea what it means. Well I’ve been finding out not for myself, but, more painfully to me, for the man I love.

Someone with shitty aim tried to find a vein in his arm. Then his hand. Finally, his other arm was successfully conquered by lucky Number Two. Once we’re all home after work and school, we are gathered around the kitchen island. Brian has short sleeves on, so you can see the bandages from the success and failures. We joke about it, but my heart hurts. He’s so healthy and vibrant (perhaps a code name for smart ass), yet seriously ill. I still can’t wrap my head around it.

Did you know they pump radioactive dyes in for a PET scan? I would have had more anxiety about it had I known, so I suppose it’s best I didn’t. Again, the word helpless breezes through the space between us.

I will do everything a caretaker can, but will it be enough to help him make it through the bad days? Can my words, actions and kindness translate into value in this fight? 

We will find out.

Cancer ambushed us. While cancer isn’t necessarily habit or age based, I just didn’t see it happening to any contemporary, much less Brian. 

Today, I have anxiety. It is not just any day. Today My Love takes the final test to assert cancer stage. Tomorrow we get the final results.

How bizarre it is to hope we get stage IIIa. At some point we’ll hashtag our entries to give other couples the type of information we sought but couldn’t find. Something good needs to come out of this. For now, this is so friends know what’s up and for me, a way to process.

Feeling Helpless as a Spouse

Feeling Helpless as a Spouse

I was so frustrated I cried. 

While Brian and I understand each other well, we do not approach things the same way. In StrengthsFinder language, my most prominent strength is Activator. Activators get things moving. We are instigators. I feel immediacy and jump on important projects. 

Brian is a Deliberator. Deep thought takes place over time before action is taken. He is quiet about the subject while he gets his head around whatever it is. Deliberators feel no rush.

So with cancer, I’m ready to queue up the Rocky theme and start fighting. I want to change our food. Start exercising more together, priming for the battle of our lives. I want to bleach the house top to bottom to ensure it’s germ-free during treatment. Make lists of things I can do to make everything easier for Brian and Ella. Every day I’m wondering how to help my husband win.

And, well, Brian is not boarding this train. He wants to maintain normalcy until treatment begins. Business as usual.

We are reading and reviewing personal and general cancer documents. Started this blog. But that’s not fighting. 

In the first days of diagnosis, a book was suggested to Brian on a cancer forum. We know now it is somewhat radical with regard to diet and other lofty ideas on how to live your life to potentially avoid cancer/cancer spread. So I was researching recipes that include turmeric, leeks and bok choy as well as how to hide hemp and flaxseed in food. I traveled to the Asian market in Dallas to find the best green tea and packed walnuts and apples in his lunch. 

Then we went to the radiology oncology appointment. Dr. Inygard spent six years at MD Anderson, the best lung cancer hospital in the nation. He said the most important thing was to maintain your caloric intake any way you can because appetite and tastebuds change a lot during treatment. Some patients lose too much weight and end up starving to death. 

Brian heard enough. It makes sense with his health that he doesn’t need radical change. I had the flu the week prior to diagnosis and Brian didn’t get it, even without the flu shot. Somehow, his immune system is still strong.  So there isn’t much for him to do right now outside of appointments. 

Yet I want to fix this. Now. I want to do everything I can to ensure Brian is okay. I want to dedicate myself to this. But I’m powerless. Adrenalin be damned; tears in my eyes. I do not like to feel helpless. However, the reality is I can’t fight this for him, just with him. 

That will have to be enough. 

Happy Anniversary

Happy Anniversary

I got my nails done in the color I would have chosen for our wedding, which was supposed to be on December 3. We had already canceled the event because for me, all of the stress of big change in 2019 was enough. I love living with my husband. I love Ella. I love the dogs (except when they pee/poo in the house). But that was enough. It was my limit on the year.

Moving to Saginaw in March, which is north of Fort Worth, from Richardson, north of Dallas, was huge. I’ve never wanted to leave Dallas. My tribe is there. Any kind of shopping is 15 minutes away max. I grew up there and know the area like the back of my hand.

Now I’m in a foreign land with never-ending trains and trucks of all sizes. It feels like I may as well be on the other side of the country. Everything is different. Where’s the cheese grater? Where’s Target? Where can we put some of my special things so I feel I’m part of your established life? 

Now at Thanksgiving, I honestly feel like I’ve finally settled in.

So the wedding was already canceled when we discovered we would actually be in a radiation oncology appointment December 3. 

In hindsight, I’m glad we married during lunch on a random day in April. I had no idea, but in Texas you can common law marry by just going into an office and raising your right hand. No pronouncing anyone Man and Wife. Just signed a paper and went back to work. Now, I realize how much more difficult it would have been to make appointments or get information if I wasn’t a spouse.

But our real anniversary has always been December 3, the day we first got married almost 26 years ago.

December 3, 2019, will be spent in a hospital with my husband who shows no signs of illness. I had to catch my breath when I heard the date. It is not the romantic, nostalgic, special day I was looking forward to. Instead, I will be taking diligent notes as someone explains how he intends to poison my husband in order to heal him. 

All with perfectly taupe nails.

Context

Context

Buying a 9 foot Christmas tree and a treadmill. This is how we are preparing for our cancer fight. The tree signifies normality. Business as usual. After all, this is our first holiday together. I love me some Christmas and Brian loves to make me happy, hence the XL tree. 

The treadmill, well, that’s for cancer. Because if you are about to enter the fight of your life, you’ve got to stay in shape. Health can defeat the Enemy.

Cancer entered our life just a few weeks ago, but the invasion had begun long before we were aware. Brian’s lung tumor is 10cm (doctors only use the metric system, I suppose non-mathematically based Americans are the only people still using the Imperial system). I didn’t know it then, but apparently this is large. Every nurse or staff member who’s asked us the size of the mass has unsuccessfully tried to not sound surprised. It’s abnormal to present as healthy as Brian does with the juxtaposition of how sick he actually is. 

I think I was a little in denial until the blood tests started coming back. Every abnormality, and there were only a few, had the potential to illustrate the presence of cancer. Trust me. I’ve looked it up.

Cancer is present. Cancer has heightened our emotions apart and together. It seems like the elephant in the room. As though it’s had a seat at the table and has been eating my husband’s lung one morsel at a time, and we knew nothing. 

So on this lovely Thanksgiving weekend, I choose hope. Happiness. Relaxation. All the while, knowing that multiple oncology appointments and body scans searching for signs of other potential invasions await us in the next week. All the while knowing life is going to change, ready or not.

Did I mention this is our first holiday together?

Voldemort

Voldemort

There was no warning, there was no testing. Once Brian’s doctor got the chest x-ray back she called and told him it could be cancer or possibly be pneumonia. Brian didn’t think much of it, but I didn’t think he had pneumonia symptoms, and he had a backache that had been problematic for awhile, which had been a symptom when my father had lung cancer.

How can a doctor say, simply from an X-ray, that you most likely have cancer, I wondered. I thought cancer had to be diagnosed with multiple tests and a biopsy. The chest MRI was scheduled the next day. Results delivered to us that night. 

Still cancer.

The doctor had a thoracic surgeon friend she could get us in with the next day (day 3). We went to that appointment and I made sure to take notes. I began to understand that any mass over 3 cm in the lung is considered cancer until proven otherwise. Brian’s mass measured 10 x 9 x8 cm. 

It’s hard to hear yourself say, “My husband has cancer,” after only 72 hours. You actually can’t say it. You get to the word ‘has’ in the sentence and go silent awkwardly.

It’s like saying Voldemort at Hogwarts. 

 But I was still holding out hope. These two were small town doctors (he was diagnosed in Denton), so what do they know? Someone I work with was kind enough to ask around the medical community for the name of a great lung cancer specialist at UTSouthwestern.

Now we’re talking. Big City doctor, real answers. But actually, Big City doctor can also translate to Big City problems.

Calling the UTSW doctor was an introduction to a new way of life. You can call numbers, but you can’t call any doctor directly. A main hospital switchboard helps you with questions you might have. If you’re an existing patient, you can send an email. If not, you are SOL.

They call you and you better answer because it will be a beat down returning the call or getting them to call back. Your appointment is not booked at your convenience. If you are lucky enough to get an appointment, take it.

I had completed an online form for a callback from this doctor, whose resume included MIT and a fellowship at MDAnderson, the holy grail of lung cancer expertise (I did lots of research in a very short time). Ignoring the ‘please wait for a call back,’ Brian persisted. When Dr. Chui’s nurse did call back, she informed Brian that the doctor was only taking patients with masses larger than 8 cm. 

It was our lucky day! After asking him a battery of questions, they set an appointment for almost 2 weeks away, but she said she would try to find another appointment. We ended up with one less than a week away.

It seemed a little extraordinary. With every nurse or doctor we spoke to or who saw our test results, we found ourselves at the front of the line. But with the cutting in line comes the reality that the medical community around you is taking this very seriously. And that is some scary shit. 

Sleep and concentration become sketchy. Anger rears its head. You’re not yourself.

We’ve been married less than a year. Don’t we deserve to enjoy each other for a bit before some tragic circumstances? This is how we’re spending our first holiday as a blended family? Or just the classics, ‘why me? Why him? Why now?

But nones of my questions will be answered. We will just stay strong, make solid decisions and forge ahead, hand in hand.