Category: Brian’s Ramblings

Late Night Cancer Update

Late Night Cancer Update

I had a CT scan yesterday, met with my doctor remotely today, everything looks great, no cancer growth! The tumor was shrunk significantly when I had my last scan in March, and it has remained that way.*

So, I will continue on with my immunotherapy for a year, with another scan in three months.

*Given the initial size of the tumor, shrinking it down was the objective, not making it disappear. And since it isn’t getting bigger, it means that the cancer in the mass has been killed. Up yours, tumor.

Deeply Meaningless Thoughts…

Deeply Meaningless Thoughts…

I keep reading people making the case that they refuse to lose everything – meaning their small businesses, their jobs, money, and so on – because of Covid-19. And on the surface, it makes some sense. You worked hard for your job or to create your small business, and you need to feed, clothe and shelter your family. I get it.

But I’m sorry, loss of a business or a job pales in comparison to loss of a life. You can rebuild your business or start over. You can find another job. It will be hard, and in some cases, devastating financially. But death is permanent, and infinitely more harrowing.

We are all suffering some level of loss right now. So please, before you place yourself and others at risk, put your loss in context and ask yourself if what you’re going through is as bad as losing a loved one. If your answer is to prioritize something that can be replaced, you’re the problem.

Update!

Update!

I had an x-ray and a CT scan while in the hospital, and had a virtual visit with my medical oncologist today. She said that I likely had a combination of an infection and inflammation that put me in the hospital. She also said my tumor has been shrunk significantly (originally it was 8.9×6.9x10cm, it’s now 3.2x.2.8×4.8cm) and she is happy with the progress so far.

I’ll skip my immunotherapy infusion tomorrow to avoid any additional inflammation and return to it in two weeks, which is on schedule. I was going for my first scan on May 4th, that’s now going to happen on May 20th, she said no need to rush that since things look good.

It’s Been Awhile…

It’s Been Awhile…

My apologies to the threes of people who read this, I have been remiss in my posting duties. This is an update from my visit the the ER and ICU on March 23-25.

Warning – tl;dr ahead!

I was tested for Covid-19. Here’s what it’s like…

First, I should state for anyone new to my reports that I’m one of those lucky non-smokers who was diagnosed with lung cancer. I have been through six weeks of concurrent chemoradiation, and I am currently undergoing immunotherapy.

All that said, this puts me at dire risk when it comes to something like Covid-19. It’s bad enough that it’s a respiratory virus, but since I am also immunosuppressed, that’s a recipe for disaster.

I hadn’t been anywhere but in my car and house for two weeks, that is until early Monday morning this week. That’s when I started having trouble breathing without a sharp pain right below my Adam’s apple. I woke Tori up, telling her that I think we need to reach out to the on-call doctor at the UTSW oncology department. The doctor called us back, asked lots of questions, then recommended that we drive to Dallas to the UTSW ER.

So off we went at 5:30 in the AM. Upon arrival, we were met at the doors of the ER by someone who was screening to determine why people were trying to enter. Right after I entered, the person told three people trying to either cut through for work or get upstairs that this is only for sick patients, all else can find another path.

I went through intake, and was whisked into a room, where after some initial conversation, we were left to our own devices for a bit. During that time, someone came and wrote on our frosted door. It said:

Well, that was certainly comforting. When the nurse finally did come in, she was dressed in full hazmat gear. Also very reassuring. She brought in a tablet, which was used to converse with the doctor as he was deciding whether to test me for Covid. After hours, they decided to test me for it – and basically anything else they could think of. This is when I was moved to the ICU.

As they’re getting me ready to wheel out to the ICU, they tell Tori she can’t come, because Covid. She grabbed my hand and squeezed it, and I could tell just how anxious that made her. I wanted to be there for her, but I simply couldn’t be in that moment. She wanted to be there for me, but she was being shut out. It was tough on us both.

As I sit in the ICU, I am constantly being monitored and watched through a window. I am not allowed to go to the bathroom in the room, I have to use a plastic jug when I urinate, and if I need to do anything else, they have to come into the room and help me sit down on the toilet. At this point, I hadn’t slept in over 24 hours, but there’s no way to sleep, as they are constantly asking me questions, plus several hours of tests, a million wires being connected to my everything, and an IV being started. Anytime anyone comes into my room, they are fully suited up in their gear, which makes everything take forever. I finally get something decent to eat around 9 PM, which makes me feel better and at the same time exhausted.

At around 10:30, the nurse comes in without her gear on, and tells me that I am Covid negative. I text Ella and Tori, and await the next move to a regular room, which happened quickly. It turns out I had a lingering infection, likely a pneumonia that was causing my breathing issues and was likely what is called referred pain – that is where one part of your body creates pain in another part, and they really don’t understand why. They had two IVs in me for two days, constantly loading me up with antibiotics and steroids, and I was on oxygen. My doctor told me on the third day that she wanted to get me out of the hospital, as I was very susceptible to another infection, and that my level of exposure in the hospital was high.

On the third day, I was released, and it felt like I had been run over by a truck. I got home, took a two-hour nap, was awake for an hour, then slept for about 14 hours.

I can honestly say that every single person I dealt with at UTSW was warm, caring, personal, professional, and obviously exhausted. They are amazing human beings doing something that only the best among us do; putting themselves in harm’s way for the greater good.

As Mister Rogers said:

“When I was a boy and I would see scary things in the news, my mother would say to me, “Look for the helpers. You will always find people who are helping.”

I found them, but I hope no one else has the need to do so anytime soon. Stay at home people, otherwise you’re putting someone like me at risk for a trip to the hospital – or worse.

Phase 1 Complete

Phase 1 Complete

Sorry it’s been awhile, but I’ve been dealing with the cumulative effects from six weeks of chemo and radiation, and I haven’t been up to thinking clearly, much less posting anything of importance. Plus, I wanted to finish that part of treatment before I posted again, as there wasn’t really anything new to report other than, “I feel like shit and it’s hard to tell the difference between treatment fatigue and severe depression…”

I finished the first part of treatment two weeks ago. I’m very happy to be done with that part of it, but it’s not the grand moment I thought it would be when I started. Well, it wasn’t until I saw my medical oncologist who told me that I’m technically a cancer survivor after treatment, and that I’m now in maintenance mode – AKA immunotherapy treatment, or phase 2 of treatment. I guess that’s why they have you ring a bell at the end of chemo, makes more sense now that they told me this. woo.

I start immunotherapy tomorrow, which should go smoothly, assuming that my immune system doesn’t decide that my eyes or internal organs are the enemy. They said that’s very rare, but so is a 50 year old non-smoker getting cancer. I think I’m becoming an optimist! I am mostly back to work, feeling better each week, but still pretty weak and tired. I’m hoping that immuno will boost my energy a bit.

Oh, and for those who don’t know what immunotherapy is:

It’s just another – It’s just another day…

It’s just another – It’s just another day…

Sorry it’s been a bit since I posted, but I’ve been keeping my head down, trying to rest and get to the end of this part of treatment. I am down to ten radiations and one chemo. While I am enjoying some radiation sunburn, I am most excited about chemo ending. At five treatments in, along with the radiation, the cumulative effect is 100% real.

My pale Irish skin is burnt to a crisp!

I’ll have more tomorrow, for now it’s time for some Tums and sleep. Good night everyone.

Some Good News

Some Good News

I met with the radiation oncologist on Wednesday, and I told him that all things considered, I was doing as well as I think I can. When I told him that my wheezy, death-rattle cough was gone, and so was the majority of the pain I was feeling under my right shoulder blade, he said that these were really significant signs that my tumor was shrinking. There was no guarantee that the tumor would respond to chemoradiation, so this is very good news indeed. Of course, nothing is 100% certain, but this ranks very highly as good news!

About Halfway Through

About Halfway Through

I’m halfway done with chemo, and about a third of the way through radiation. Here’s where things stand:

My throat hurts when I eat and/or drink, and that’s thanks to the radiation. Even though the rads is highly targeted, it’s close enough to my throat to cause some issues. I’m waiting for a script for something called magic mouthwash to get to the pharmacy. It has codeine in it, so I hope it helps numb things so I can eat without feeling like I wrapped everything in sandpaper. Oh, and I can’t eat full portions of anything without getting the feeling of heartburn, and I eat mostly soft foods to avoid the throat pain.

I’m exhausted all the time, but after chemo is the worst. Mondays and Tuesdays are really hard to manage, but I’m fighting through it the best I can. I mostly sleep, go to radiation treatment, then come back home and lay around until bedtime.

On the positive side, my wheezy death-rattle cough is basically gone, and the back pain I had is very minimal now. Essentially, I’m trading one set of symptoms and side effects for new ones as this progresses.

Oh, and if anyone reading this still smokes, stop now, you dumbass. You do not want this, and you have a choice. So quit smoking right now.

The Loneliness of Treatment

The Loneliness of Treatment

One thing that’s not obvious when you begin this process is the isolating effect of treatment. Let me say up front that it isn’t a bad thing, and it’s not anyone’s fault; it’s simply the way it is, at least for me.

When you’re doing very aggressive cancer treatment, it certainly takes its toll on you, and your reality changes pretty quickly. You go from feeling normal – well, as normal as anyone can feel – to constantly feeling fatigued at best to being completely wiped out and your brain barely working.

At first, I though “well, treatment will be very hard, but I’ll be able to rest and be at home for a bit.” The reality is that you don’t have the mental or physical energy to do anything that you actually like, so you end up essentially just, well, existing. This is the isolating piece of it, because lots of things you really like to do get cut from your daily life, and you end up doing what you can, which at times isn’t much at all. And because you feel so exhausted by chemoradiation treatment, real interaction with people feels like another thing that gets cut from your life.

A good example of what’s changed for me is that I haven’t played any of my instruments for a few weeks now, which is surreal. That is such a big part of who I am. But I’ve had to accept that who I am right now is rather singular – I’m fighting cancer.

The Second Chemo

The Second Chemo

A quick recap…

The first week of chemoradiation was a learning experience. Basically, it comes down to this: Chemo, then two days of feeling somewhat normal. This is followed by two days of being bedridden and feeling like shit. Then, a slow crawl out of the hole for two days, just in time to start all over again!

It’s weird to simultaneously dread chemo yet look forward to the little bump I get from it. Love/Hate.

I had my second chemo treatment Friday, and I felt pretty good again through this morning. Around noon, the energy fell away, and that means the “crappy, sleep all day, drink my meals” phase is about to start. Whee.

We’ll see how I feel tomorrow.

The Christmas with Cancer

The Christmas with Cancer

So my dream of things getting better were short-lived.

Ugh. Monday and Tuesday this week were miserable, low grade fever of about 99.0 to 99.5 – my doctors are aware – extreme fatigue, coughing, mostly stayed in bed. It took me a while to realize that I had a headache, as I never get them, but every time I coughed, I felt it in my pumpkin head. Given the constipation, I wasn’t going to take anything else until I could move things out, so to speak. Oh, and rust colored phlegm for days, what joy…

Someone suggested Miralax, which pushed things through (mostly) today. One victory at least.

Last night, I thought I was having night sweats, but I think my fever broke this morning, as I’m feeling a little better. Through the day, I keep getting incrementally better. Mind you, I’m not about to do anything other than walk to and from the bathroom, but it’s nice to be rounding back into semi-normal form. But hey, I get rads tomorrow, then chemo and rads Friday. Let the good times begin again!

The Unexpected Joys of Treatment

The Unexpected Joys of Treatment

After my chemo on Thursday, I slept well that night, and I actually felt really good on Friday. I thought, “Hey, this thing is starting to show positive results already!”

Yeah, that didn’t exactly pan out. Yesterday, I had the hiccups for the entire day, followed by an inability to produce the normal ration of poop. So, in all my hiccuping and straining, I think I pulled a rib muscle on the left side of my chest. This led to a horrible night’s sleep, and I had radiation this morning, which was a slog. I came home and slept about half the day, and now I’m hoping for a good night’s sleep before I have to return tomorrow morning for the next round.

I have the next two days off from treatment for xmas, which I’m very happy about.

The First Chemotherapy Treatment

The First Chemotherapy Treatment

They brought me back to my private suite for chemo, and it was very comfy. Reclining chair, TV, you can turn the lights off and relax, perfection. Well, it was until the first chemo drug…

They started the treatment by loading my IV up with Benadryl and anti-nausea meds, which made me sleepy, but I was relaxed and ready. About 30 minutes after they dropped in the first chemo drug, I started to feel like I had really bad heartburn, I felt flush and like my throat was a little tight. I wasn’t too concerned, but I pressed the call button, and a nurse came in. I explained what was up, and suddenly there were four nurses whirling around, asking questions and giving clear directives. They called my medical oncologist, then they paused my chemo drug, gave me more Benadryl, waited thirty minutes, then restarted my chemo at a slower rate and then increased it gradually, no issues after that!

After the first chemo drug was restarted, and I was feeling very loopy, a black woman walked in with a guitar. Yes, you read that right. She started asking me seemingly random questions, then introduced herself and told me she is a music therapist. She asked if I knew what that was, and I laughed and told her yes, and that I was a musician as well. We started talking about our backgrounds, what instruments we both play, and so on. She asked me what bass players or genres influenced me, and I told her that my absolute favorites were James Jamerson, Charles Mingus and Paul Chambers. We talked about Jaco, Carol Kaye and Motown. Along the way, we talked about how white artists in the 50’s and 60’s were heavily influenced by the blues and jazz world – black culture – and how the black artists who originated these sounds weren’t in a position to – or in some cases allowed to – bring their incredible music to a wider audience. She summed it up perfectly by playing a song by a local artist; the black man make it, the white man take it.

We talked for about 45 minutes, and then DING! the machine told us that my infusion was complete. That was an unexpected and serendipitous moment in life, and while I certainly am not a fan of cancer, that was a welcome respite from the day to day of treatment. So, my thanks to her.

The First Radiation Treatment

The First Radiation Treatment

Everything about the treatment was highly choreographed, yet very relaxed and comfortable. They called me back, talked the whole way to the changing room about what to expect, got me ready and took me to their staging area where they manage the treatment. We walked past a room with frosted glass on all sides, and there was writing on every wall. In the room, it looked like air traffic control. Very cool.

And unlike the MRI, they asked what music I wanted, I said Wilco, and Wilco is what I got through loudspeakers in the room. So far, so good…

They laid me down into the mold they made during my first visit so that my body is in the same place every time. They shifted me back into the same uncomfortable position they did for the simulation, and away we went with the treatment. Once things got started, I was completely engrossed in the machine they use to deliver the radiation. Here’s a video of the thing in action, it’s really amazing technology.

I have the full schedule of radiation and chemo now, I’ll be posting that tomorrow when I do chemo for three hours.

The Chemoradiation

The Chemoradiation

On Wednesday, I start radiation. Thursday, I start chemo. Luckily, the chemo can be done in Fort Worth at the UTSW Moncrief Cancer Center. I’m going to be driving to Dallas five times a week for radiation, so any reduction in my drive time will be most welcome.

I have no idea what this experience will bring me, but I am ready to get this going – regardless of the side effects.

The PET Scan Results

The PET Scan Results

I met with the pulmonology nurse practitioner today, and the PET scan came back with no new cancer, so I’m officially Stage IIIa. That is very good news in terms of my treatment and prognosis.

After that appointment, I went to see the radiation oncologist, where he did a simulation with contrast. Essentially this is a simulation of radiation treatment to mark my body position and location to target the cancer. They gave me four small black dot tattoos that mark those locations.

I start radiation next Wednesday afternoon, and we’ll schedule the rest that day. Tomorrow I meet with the medical oncologist to plan the chemo treatments. More soon!

The PET Scan

The PET Scan

Back at UTSW in Dallas for the PET scan. Got here early, and they called me right back, which was great. First technician tried twice to insert an IV, and both times it felt like he was trying to slay a dragon. He sent in another tech, who got it right away, thankfully. I had to drink what felt like a 55 gallon drum of “creamy vanilla” barium, then they wheeled in this device that was about the size of a food cart and filled me full of radioactivity. I’m just waiting for the Spiderman effect to kick in…

Anyway, I’m sitting her for an hour to let the barium and radioactive goo course through me, more later…

The Brain MRI Results

The Brain MRI Results

Just before the close of business today, Doctor Chiu’s nurse practitioner (the pulmonologist), calls and gives me the definitive word: The brain MRI is negative, no cancer in my brain. Thank you Tammy, thank you for calling and letting me know. Thank you.

Now we wait for the PET scan on December 10th. This will determine if, from the neck down, cancer is anywhere other than my right lung and the few surrounding lymph nodes. It is the final piece used to determine the stage of cancer I have. Right now, it is still considered Stage IIIa, which was supported by the negative brain MRI result. I see Doctor Chiu (pulmonologist) and Doctor Iyengar (radiation oncologist) to review the PET results the 11th, begin preparation for radiation, then Doctor Rashdan (medical oncologist) the 12th to begin preparation for chemo.

The Calming Doctor Rashdan

The Calming Doctor Rashdan

Right after the MRI, I had my appointment with the medical oncologist. I was quite anxious about the MRI results. I knew that the radiologist wouldn’t have time to review it and create a report since my next appointment was only an hour later, but would Doctor Rashdan give me any indication of what the scan showed?

When she came into the exam room, we talked about her role in my treatment; she is responsible for the chemotherapy and immunotherapy portion of my treatment plan, plus identifying genetic mutations that might exist and any treatment that this might help direct. She says that we will know more about the specific treatments we will use once the MRI and PET scan results are in.

I tell her that I just came from my MRI, and she said that while she was not a radiologist, she would take a look and see if anything obvious was there. Right in front of me, she pulled up the MRI and started scrolling back and forth through the scan, all the while I have my third moment of high anxiety; will she say “brain full of cancer” or “looks good to me?”

Finally she said that she didn’t see anything, but that the radiologist’s report would be definitive. That gave me relief, but it also made me realize just how much I’m living in these small pockets of time between every scan and doctor’s appointment, trying to compartmentalize each revelation in a way that allows me to remain calm.

We finish with discussion of what’s next, and how she and the radiation oncologist, Doctor Iyengar will work together to customize my treatment plan based on the last piece, the PET scan.

The Brain MRI

The Brain MRI

Off I went at holyshittooearly o’clock to Dallas to get my brain MRI. I was given a lovely set of pants and some blue socks, had an IV line inserted, and sat awaiting my time in the tube.

Captain Sexypants reporting for duty

After about an hour, I was led into the room, then placed in an iron maiden for my scan. Essentially, my head was locked in a cage with a small mirror that showed what was directly behind me, pieces of pliable plastic on either side of my arms so that they didn’t touch the MRI machine, a cord to squeeze in case of emergency, and some earplugs and headphones.

As they rolled me into the tight tube, I looked in the mirror which showed a poster of a bridge over the ocean leading to a hut. Nice, right?

Yeah, except for the miscellaneous equipment that was stacked right next to it, which kind of killed the tropical vibe. But I digress…

They asked me what music I would like to listen to. I said, “Wilco please.” They turned it on, and I couldn’t hear anything. After the first scan, I asked them to please turn it up. Massive improvement, now I could barely hear it when the MRI wasn’t running. When they came into the room to administer the contrast, I asked why I could barely hear it. They said, “Oh, it’s all the way up. This is why we have asked them to stop offering music.” Uh, cool.

After over an hour in the tube of fun, I was all done. Now off to the medical oncologist…

The Fantastic Doctor Iyengar

The Fantastic Doctor Iyengar

Before we went to the appointment, we looked at his credentials, and they were very impressive. He is a biologist, a researcher, and a physician. He runs research programs and clinical trials for lung cancer patients. And he’s fantastic when it comes to patient communication.

When he walked into the exam room, he instantly put me at ease with his attitude. It’s a rare combination of optimism and realism that doesn’t come across as an act. I believe this is just who he is, 100% of the time.

We start talking about where I am, what we still need to know, and where we likely go from here. He’s thorough, funny with a dry sense of humor, engaging and unfiltered in his assessments, which makes him a perfect fit for me.

He explains that his focus is on radiation, which is a part of my overall treatment plan. He thinks that I will tolerate an aggressive regimen of concurrent radiation and chemotherapy, but tells me he’ll be disappointed in me if I can’t handle it with a grin. Perfect.

I ask him what goal of his treatment plan is. Cure? Control? Relieve symptoms? Without missing a beat, he says “cure.” He goes on to say that this could also mean treating it as a chronic condition, which means frequent scans and potentially more treatment if they see even a dot of cancer. Of course, I hope that’s not necessary and it simply goes into remission, but knowing that this man is fighting for me makes me feel very calm about the whole process.

So, as long as the brain MRI and the PET scan come back negative – meaning that it hasn’t spread beyond my right lung and a few lymph nodes in that area – that it would be Stage IIIa, and he would recommend the following treatment plan:

  • Radiation – 5x a week for six weeks
  • Chemotherapy – 1x a week for six weeks
  • Immunotherapy – Once every three weeks for a year

I ask about this versus surgery, and he explains that his recommended treatment has the same level of efficacy as surgery without the inherent dangers of cutting you open and removing part of your lung.

Next is the brain MRI, which to me is a big deal. I don’t want brain mets (mets is shorthand for metastasis).

The Biopsy Results

The Biopsy Results

The day before Thanksgiving I get the call letting me know that it’s non-small cell squamous cell carcinoma lung cancer. This is usually associated with smokers, but it can happen in non-smokers as well. While any cancer sucks, this is better than some of the other types that it could have been.

Next up is the radiation oncologist, the brain MRI, the medical oncologist, and the PET scan. Again, the MRI and PET will determine what stage the cancer is.

The Biopsy

The Biopsy

We arrive at UTSW the next morning, check in, and are told this will cost us over $5,000. But hey, we’ll have met the deductible for the year! In November. yay.

We are called back, and taken to a room where I’m told to get into a very loud gown with a lovely hair net.

I LOOK AMAZING

Now, I’m not nervous about being sedated, but I had never been under before. The team come in one after another, get my IV line in, all the leads for monitoring in place, and then it’s time to roll on back. One of the nurses asks if I want the pre-sedation cocktail, which will make things very mellow. Damn right, put that into action, sounds good.

It’s worth noting that every single person who came into my room was wonderful and very warm, going out of their way to be kind and let know exactly what was going to happen to me every step of the way.

So, she drops that cocktail in my IV, and they start rolling me down the hallway. Within 30 seconds, I am the most relaxed man on the planet. Into the room we go, where they move me onto the table, ask me some questions, then drop the mask on me. That was that, I was out.

Now, the biopsy is a procedure known as a bronchoscopy. Rather than me explain what that is, watch this video. It walks you through exactly what they did. For those of you with short attention spans, don’t worry it’s only two minutes long.

They do their thing, and then I’m wheeled back to an observation room. I hear talking, but I can’t open my eyes. Eventually, I get them open, and I can somewhat focus on the words being said. Regardless, I almost immediately started asking questions about, well, everything. I remember about 30% of that.

Part one has been answered; the cells they looked at in the room were cancer. Now we wait for the lab to come back with what type of cancer, which may be delayed because next week is Thanksgiving…

The Stoic Doctor Chiu

The Stoic Doctor Chiu

When Doctor Chiu walked in, he got straight to it. Yes, it looks to be lung cancer, Stage IIIA, and it appears to be in some of the lymph nodes in the surrounding area, but my left lung looks good, likely nothing either in that lung or those lymph nodes. The way it is growing, it is probably small cell carcinoma lung cancer. We talk through what to do next. He shares with us a heartbreaking story about his own family, but does so in a way that makes it about my situation, not his. To be honest, his personal story broke my heart, but it also helped me tremendously.

He asks us if we want him to be my doctor. The immediate answer was yes. Okay, so do you want to have all your treatment here? Again, yes, this is the best place I could be right now. So, here’s the plan he lays out:

  • First, we get a biopsy to confirm cancer, to get cells to identify what type of cancer I have, and to see if it has moved into lymph nodes.
  • Next, we schedule a brain MRI and a PET scan, which will tell us what stage the cancer is.
  • Then appointments with radiation and medical oncologists. The radiation oncologist will create a treatment plan for the radiation portion, and the medical oncologist will handle the chemo, immunotherapy, and any genetic mutation treatments that might be applicable.

We agree to this, and he shakes our hands with a slight bow, then leaves the room to get things in order. Before we even get out of the exam room, I get a call to schedule the biopsy. It’s tomorrow morning, no time to waste it seems.

The Thoracic Surgeon

The Thoracic Surgeon

I was fine most of the day leading up to the appointment, but as the time to leave came closer, I started to think about what he might say. Was he going to tell me that it was something that could be treated? Or that I should go home and get my affairs in order?

As I waited in his office, I was completely consumed by the possibility that it was terminal. What a surreal mental state – going from thinking of your life in terms of decades to – in just a matter of days – collapsing that down to years, or possibly even months.

We are called back to the exam room, and in short order the doctor comes in and says, “oh wow, you’re a young man, I was expecting a 70 year old man, because that’s a big,scary tumor.” Yeah, thanks there doc, that really took the edge off the moment.

In a nutshell, here’s what happened:

We looked at the CT scan, and based on that he thought it was Stage IIIa. He said we needed a PET scan and a brain MRI to rule out metastasis (when it moves from one part of the body to another), but if it had metastasized, that would not be good.

After that, we talked about what things might look like if it hadn’t spread anywhere else. His plan was that we should do chemo and radiation, shrink the tumor, then cut out 1/3 to 2/3 of my lung, which would give me a good prognosis. He told me the fact that I’m young, a nonsmoker, and in good health otherwise, that the statistics out there weren’t my numbers, so plenty of room for optimism.

While it started out poorly, I left thinking, “okay, worst case, I get three years and I can work with that. Best case, I am missing part of my lung, but I get to hang around longer.” As odd as it may seem, this all sounded good to me, and lifted my spirits immediately. Why? Because I wasn’t told to go home and wait to die.

That said, this doctor was still not who I wanted to entrust my life with. Tori reached out to her people for referrals, and we were directed to Doctor Chiu at UT Southwestern. Since this is where I was treated for my tinnitus, it was already on the top of my list, but after researching this doctor and the organization overall for their cancer treatment, it became the obvious choice. So, an appointment was made, and soon we met with the stoic Doctor Chiu.


The CT Scan

The CT Scan

Back I went to the same imaging place for the CT. They injected me with contrast and imaged away. I left and went back to work, and at this point the vague idea of cancer crossed my mind, but I thought, “you haven’t been a smoker for over 20 years, you’re young and in good health. You don’t drink any alcohol – hell, you don’t even drink caffeine – nothing to be concerned about.”

Wrong, Doctor Whaley. My doctor called me at 6:00 that night to tell me that it looked like cancer, but that I needed to go to a specialist (in this case, a referral to a thoracic surgeon) to learn more.

Nice clear image of my mass o’ fun.
Fly through my body via the magic of a CT scan! It starts from the top and moves down.
The mass shows up on the left of the screen, but that’s my right lung.

That call was one of two times when I had any significant anxiety or fear about this diagnosis. The next time comes the very next day, when I saw the thoracic surgeon…

The X-ray

The X-ray

Off I went to the imaging center to get my chest x-ray. I mean, I wasn’t wheezing or coughing, so it seemed that this was just a cautionary scan. I checked in, and they took two shots of my chest; straight on and from the side. I left, not thinking much about it.

The next day while in a meeting at work, I got a call from my doctor’s office. I assumed they were calling me to say that the chest x-ray showed nothing, and to continue on with the Mucinex. Suffice it to say, that wasn’t what happened. She told me that the radiologist reported that the x-ray showed something abnormal that “might or might not be pneumonia.” I asked what the hell that meant, and she said she didn’t have any more information, but that they wanted me to go in for a CT scan to clarify what it was.

The circle shows the mass, which is in my right upper lung.

Still, this didn’t strike me as anything of major concern, so off I went for the CT scan.

The Beginning…

The Beginning…

This all exploded on November 11th, but the path to learning that I had lung cancer began back in July.

I went to my primary doctor because it felt like I was breathing in cold air at the apex of a deep breath, and my ongoing neck issue was still bothering me – she had diagnosed the neck pain as likely due to arthritis a few years ago. I started having pain under my shoulder blade, so she referred me to an orthopedist for my neck who diagnosed it as cervical stenosis – which means that the foraminal bones the nerves pass through were narrowing, causing nerve pain at the base of my neck (C6 & C7). This explained my neck pain, but it also clouded the eventual diagnosis of the lung cancer because the symptoms of stenosis happened to mirror similar symptoms of cancer. We’re still not sure if the throat and back pain are caused by stenosis or cancer, but that’s how medicine goes sometimes.

So, back to my throat issues. She focused on the breathing issue over the next two months, and we went from antibiotics, to trying antacids to eliminate reflux, to an inhaler, and finally to Mucinex to see if I was simply clogged up from sinus drainage or a lingering infection. When she told me to take the Mucinex – this was November 11th – she also sent me for a chest x-ray, just to make sure I didn’t have some lingering infection. And so begins the adventure!