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The opinions (and facts) expressed here are my own and do not reflect the views of those around me.

Steve Daniels

Gratitude

1 min read

This year has certainly been full of health and physical challenges but it is through difficulty that you realize why you should be thankful. If I chose one word to describe my feelings this year, it would definitely be GRATITUDE.The people who surround me have provided support, care, humor, and reasons to keep moving forward. I won't pretend I have made it easy or every day has been sunshine and rainbows but: I am here, these relationships are deeper and greater than before, and I still look forward to every day; no matter what it brings.

Thank you, everyone.

Steve Daniels

I am bad at surgery.

4 min read

There is really no other conclusion to be reached. I was pretty bad at surgery when they placed my PEG tube but I have been even worse at it this time.

I had a couple of surgeries at one time:

  1. The GI doctor tried to peform the balloon expansion of my esophagus but the smallest scope and balloon would still not fit. After a couple of tries, they decided to reschedule another procedure for October 23rd to try again with a scope and balloon designed for newborns. When I woke up and they told me I was incredibly disappointed but that was not the number one goal for the day.
  2. The surgeon removed the area around my left tonsil (the original source of my cancer) to make sure there were no cancer cells in the surrounding tissue. While I was in surgery, he sent samples of flesh from the edge of area to the lab and they were able to confirm - NO remaining cancer cells in that area. He sent the rest of what was removed from my throat to an outside lab for biopsy. They were able to confirm there were no cancer cells remaining anywhere inside my throat.
  3. Next, he made an incision from behind my left ear, down the side of my neck, and across the front of my throat just above the clavicle about an inch or so past the adam's apple. It is kinda gross so rather than make everyone look at it I posted it here for those that want to see it. They removed a few dozen lymph nodes inluding the one that was still showing some activity on my PET scan. He felt pretty sure there was still cancer present in the one lymph node. It was sent out for biopsy like the flesh from the tonsil area. The biopsy confirmed there was still some cancer present in the one lymph node but had not spread to any other lymph nodes. They made some further efforts to type the cancer and although their findings were consistent with the original squamous cell finding, the tumor also shows weird neuro endocrine markers that are not normally found in this type of cancer. 

So, that is the wrap-up of the surgery. My ENT/Surgeon says I am cancer-free. That is the fantastic news. The next step is to have a number of other oncologists look at the biopsies and cancer types to see if they think more treatment is the right approach. More treatment would, likely, mean maintenance chemotherapy. Less toxic than the first treatment and NO radiation. But that decision will wait.

For now, I am incredibly thankful to Dr. Russell Briggs, his staff, and the OR staff at Cedar Park Regional Medical Center. You simply can't ask for better treatment than I received. All of my surgery was Thursday and I was recovering well Friday. About two minutes before Dr. Briggs arrived, I coughed and an artery that was not fully cauterized opened up. It would be impossible to convey the sense of panic I felt as this huge volume of blood started gathering in my throat. Terrifying.

Dr. Briggs walked into the room about a minute after it started. He was able to get it mostly stopped in a couple of minutes, rushed me back down to the OR, sedated me, cauterized the artery, and had me back in room in about 30 minutes, start to finish. Scary, but not as scary as it would have been if we had been discharged and it happed in the car or at the house. Definitely dodged a bullet there.

So, now I have been home a week and I have to say, the surgery around the tonsil is an incredibly tough recovery. Tons of drainage and phlegm that gathers in my throat and has to be spit up. Gross, incovenient, and very unpleasant. Hopefully, in another week, it will be back to normal.

That's it for now, but looks like there will be a few more entries in the blog before we are done.

Steve Daniels

Steve Daniels

Reasons for Hope

2 min read

I was hoping updates on the status of my treatment might be over. Apparently, that will wait a little longer.

I had a CT scan last Wednesday then met with my chemo oncologist on Thursday and my ENT on Friday.

The good: My cancerous lymph node continues to shrink but not as fast as we hoped. It was 2.5cm at the time of my PET scan (about five weeks ago) and is not 2cm. When my ENT took a peak down my throat he was able to see my tonsils were completely gone (Yay!). 

The bad: That is not the rate of destruction and absorption they expect for this type of cancer. Based on this scan, my doctors were able to convince my insurance to allow another PET two weeks from now. Out of an abundance of caution, we are starting the process of scheduling and preparing for surgery three weeks out. If the PET is favorable we will cancel the surgery but better to plan for the worst. Both doctors are very certain that removing the lymph nodes will clean up any remaining cancer cells. ENT was also able to see my throat is stil almost completely closed. He said that could still be inflammation but is going to have me see a GI. In some cases, radiation cause the muscles around the larynx area to constrict and not release. They can use a balloon to stretch those muscles back out. It is possible they will do that the same time as the surgery to remove my lymph nodes.

The best news is this: Whether we get a better PET scan or have the surgery, both doctors feel very sure I am on the road to full cure of the cancer. We hoped for the easy path but my body just hasn't cooperated. So, as with most things in life, we will push through the tougher path.

Totally unrelated to my treatment update but and even better reason for hope. I am feeling well enough that I wnt for an hour long walk in the neighborhood this morning. On that walk, I observed the following political yard sign result:

Beto - 7
Cruz - 0

Like I said in the title, reasons for hope.

Steve Daniels

I'm Still Here!!!

2 min read

I had my first post-treatment PET scan Saturday and met with my ENT and Chemotherapy doctor yesterday.

The overall report on the PET scan was very good news. I am responding well to the treatment. The tonsil where the cancer began is completely gone. The PET showed no sign of activity and no remaining tissue in that area. Originally, we thought only one lymph node was affected but it was actually two that had grown together. They are both significantly reduced and appear to still be shrinking. I was hoping they would be gone completely but both doctors felt >90% sure that they were dying and would continue to die. I will have a CT scan in a couple of months to confirm that is what is happening. Assuming they are correct, they should be able to give me the ‘all clear’ at that point.

The only downside to the report (other than having to wait for the ‘all clear’) is that I am apparently a very slow healer. I still have a very significant amount of inflammation in my throat and neck. It looks like that could persist for a couple more months. Also, my blood work is significantly better across the board buy my hemoglobin is still not back to normal. Trending in the right direction but, like everything else, moving slow.

All-in-all a very positive report.

Steve Daniels

The Bravery of Dissent

1 min read

I see so many people posting that today is a great day in American history for guns and military might. It seems appropriate there would be such an outpouring of stupidity and lack of understanding considering the current state of our country.


We are not celebrating military might or armed insurrection. We are celebrating the ideas and bravery that a few dozen men were willing to commit to with pen and paper at peril of execution. That is a bravery that is most rare today. The bravery of ideas and dissent. Let's hope he get a chance to support that kind of valor soon.

Steve Daniels

I see so many people posting that today is a great day in American history for guns and military might. It seems appropriate there would be such an outpouring of stupidity and lack of understanding considering the current state of our country.

We are not celebrating military might or armed insurrection. We are celebrating the ideas and bravery that a few dozen men were willing to commit to with pen and paper at peril of execution. That is a bravery that is most rare today. The bravery of ideas and dissent. Let's hope he get a chance to support that kind of valor soon.

Steve Daniels

The only way out is through

2 min read

I tried to post a couple of times over the last two weeks but it has been pretty rough going since the last chemo treatment on the May 16th. On the morning of my last chemo, I got out up in the morning and was immediately dizzy. The walk into the living room was almost more than I could take. I know this sounds like melodramatic but the reasons became apparent pretty quick. I was already slightly anemic and for some reason (possibly slight dehydration) my blood pressure was round 90/70. As bad as I felt, the last thing I wanted to do was delay any part of my treatment so I just moved slow with plenty of rest stops. Eventually, we made the treatment.

Getting fluids through IV all day helped out with my blood pressure and the treatment was about the same as the other two. Just a really long day. I continued to move slow and rest a ton and the following Tuesday, May 22nd. I had my last radiation treatment. It was a huge relief to be done but, as bad as I felt, both of my doctors assured me it would continue to get worse for about two weeks. So far, they have been correct. Hopefully the worst of it is done.

I will spare you the gory details but my skin is burned several layers deep, inside and outside, in the majority of the areas they treated. That includes most of the tissue from just above my esophagus up to almost the middle of my mouth. The residual radiation has continued to make those worse but that should be near its end.

I haven't swallowed anything other than water for almost two months - all my nutrition through the feeding tube. Although it may sound a little gross I would not have survived without it. It does, however, consume most of my day to just get in my feedings and medicine. Jennifer is an expert pill crusher and the most patient, loving person on earth. She has been truly amazing. More on that in a later post.

I will stop complaining for now. I have been getting IV fluids most days and will get, hopefully, the last round of that tomorrow.

 

On to recovery!

Steve Daniels

Treatment Day 22..13 to go

2 min read

Cancer treatment is hard.  No, really, hear me out on this one...

I knew there would be pain from the radiation but I was not prepared for the radiation+sinus infection. That made week three a whole different kind of adventure. After a round of antibiotics I was mostly recovered from that mess and was ready for Chemo Round Two. 

Chemo Round Two was definitely made worse by not being able to get any meaninful solid food down. My throat was a wreck and then I had a little more nausea, possibly due to a change in anti-nausea drugs.

This is when things got really hard. One of the worst (and most common) side effects to radiation of the neck/throat is damage to the salivary glands in the back of the mouth and top of the throat. Most associate this with a dryer mouth but, unfortunately, the effect for me has been an extreme thickening of the mucus. This is unpleasant when you are awake and still drinking and swallowing throughout the day. At night it is a special kind of hell, especially if you are easily gagged.

So, that has been my battle the past week. The gagging and pain in my throat have hit the point where it is difficult to get enough calories and hydration in everyday. Luckily, Jennifer is persisent. Really, really persistent. So, between her hard work and couple of extra trips to the doctor for IV fluids. I have managed to maintain pretty good health through these tougher day. Now we are trying a couple of new medicines so I am hopeful we can get a little more control over some of this.

On the up side

  • We are more than 60% complete.
  • I have the greatest FRIENDS, FAMILY, CO-WORKERS in the world.
  • and, this thing is curable.

Finish strong.

Steve Daniels

Treatment Day 16...19 to go

3 min read

I AM OK!!

I know people are not following the blog religiously but I aslo know I really wanted to stick with it as close to every day as possible.

Here is what went wrong. After the surgery, it took some time to get my G/I tract in order. I thought I was better, then I wasn't. Everything had started to taste a little worse, my throat started to hurt, and I seemed to be developing a sinus infection. The sinus infection was a little worrisome but, you know, I am a tough guy (more on that later).

Also, I overextended myself on the weekend. We had tickets to see Jim Jefferies at the Paramount for Saturday night. I didn't feel great but we had tickets to the early show and decided we could make it work. Dinner plans got scuttled. Food I thought I could eat was a pain to get to. We were running late. None of these is a good reason to skip a meal when you are fighting cancer. Bad decision.

We had a wedding on Sunday so I spent the day trying to get back on track physically. All in all, progress was made on getting some rest. Just after lunch time Sunday, my throat began to hurt a little more. By the time we got to the wedding, I was already starting to struggle. Throat was bothering me a little more but I could still handle it. There were a couple of items served at the wedding that really hit the spot.

Brief Aside #1 -Jim Jefferies was, as he usually is, exactly what I needed. I love him and find a lot of truth in his humor. The docking chunk is brilliant. Almost as good as the hotel room story from Amsterdam. I needed a night with some joy and detachment from my real life. Jim delivered on every level. I could never thank him enough for hitting me with what I needed right when I needed. And, as always, Jennifer picked out the perfect anniversary present. 

Brief Aside #2 - The wedding was beautiful. It was at Chateau Bellevue downtown. Post card Austin weather. Beautiful venue. Gorgeous decorations. Phenomenal ceremony surrounded by friends and family in a picturesque courtyard. Ran into an old friend. Beautiful toasts to the couple. A true reminder of the power of love, beauty of family, and why our forefathers saw fit to provide for our pursuit of happiness. 

Then there was Monday. I probably didn't get enough rest through the weekend. I definitely picked up a sinus infection which shredded my throat. By Monday at lunch, I could barely swallow water. It didn't get apprecably better the rest of the week. Not enough to eat, not enough sleep, constant pain. Then Saturday, with the pain in my throat at its worst, I sneezed. I know what you are thinking: It was just a sneeze. Wrong! With the damage to my throat in the shape it was in and the additional damage from the sinus infection, it was literally the worst pain I have ever felt.  That will be the new 10 when doctors ask me where my pain is on the 0 to 10 scale. There are no words to describe it. It was the first time in my life I have cried directly from pain. Sounds crazy but there it is.

I had chemo #2 of 3 today. I am feeling a little better. But now it is late so I will save the story for Treatment Day 16 for tomorrow. Bed is screaming my name.