Category: Treatment

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.

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.