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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

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.

Steve Daniels

Treatment Days 4 & 5...30 to go

3 min read

It might have been the chemo.

But it was probably the surgery, anesthesia, and pain medicine.

Before Friday, Jen had never seen me in a hospital gown, I had never been under anesthesia, and I had never had narcotic pain killers. That is a lot of firsts and the results were probably predictable.

I spend Saturday falling asleep randomly throughout the day with no real recollection of what happened. That continued until noon Sunday. When I was finally able to shake that off and start moving around things got a little better.

Monday morning I met with the Speech Therapist. Why a Speech Therapist? They help you maintain the muscles and mechanics necessary to swallow effectively as the muscles and tissue in your throat deteriorates during radiation. It was an extremely informative session and the exercises really seam to help. The complexity of the human body and the machine (tongue, throat, esophagus) that works in concert, allowing you to swallow, is amazing.

Radiation Day 4 was a breeze. The mask isn't bothering me too much and the treatments go by fast. The team at my radiation oncologist is fantastic.

I managed a pretty full day of work on Tuesday and Radiation #5. 

ONE week down, six to go.

Side Effects Update

  • I don't think I have any real nausea from the chemo...yet.
  • Food taste - I guess I would say, ' Raapidly. Almost every thing I put in my mouth has a metallic tinge. Water taste milky. Some foods sound great then when I smell and bite into them are terrible. It will be a journey to keep finding foods that I can tolerate.
  • Dry mouth - not severe yet but I can feel it beginning. When I talk for a couple of minutes it gets pretty dry. I am drinking enough water to offset the effect most of the time but it can be a little tough in long meetings.
  • Fatigue - Worse than I expected. I have need naps the last two days after radiation to get through the day. If I didn't nap I would probably have to head to bead around 10pm. I suspect naps will be a necessity through most of the treatment.
  • Neck pain - This was unexpected. The platform I am on while getting radiation has a head rest. It has two points that should go on each side of your neck. Due to my physiology (big head?) it hits me on the bones at the base of my skull. It seemed to go away after the first few treatments. It seems to be persisting between visits now. I will talk the nurses to see if there is anything to do differently.

 

 

Steve Daniels

Treatment Day 3...32 to go.

3 min read

Okay. This is the first day that sucked.

AND, because of everything going on it is impossible to know what caused what.

Here's why...

Chemo Wednesday, along with all the anti-nausea drugs that came with it could have affected my stomach.

OR, since I have never had real surgery, it could have been the anesthesia and all the pain killers. AALLLL the pain killers. 

OR, maybe it was the abdominal pain from the PEG tube placement.

Here is what I know. It was almost impossible to stay awake. I was not hungry. Any sort of gas was brutally unpleasant and, to top it all off, the constipation was terrible. That said, let's re-cap Friday.

Fasting for the surgery was not a problem. Nothing to eat or drink the night before and up at 5am to get to the hospital for check in doesn't leave much time for food or drink. They quickly got me to a bed and had me hooked up to all sorts of monitors and an IV. Typical, I guess. Fluids. Drugs. Questions. Forms. Another lovely visit to one of Central Texas' fine healthcare facilities.

When it was time for the procedure, the gave me some Versed. I didn't really notice any affects but, once in the room for the procedure, we had a couple of minutes of conversation about the Masters. Then the anesthesiologist said, "OK. I am going to give you Propofol, now." I remember nothing else. Zero. Zilch.

I woke up as they were rolling me back into the room where they prepped me and was pretty alert. One of the weirdest feelings I have ever felt. Then, for the pain, they pumped me full of painkillers of different kinds. Percocet, Fentanyl, some other stuff. I really don't remember all of it. I was pretty loopy but felt coherent and was moving pretty well when they discharged me. To make things easier, we went directly to my radiation treatment (next door, as luck would have it) and they were gracious enough to work me in. I was a little worried about how I would tolerate laying flat on the table and being strapped down but it was no problem.

This decision, as it turned out, was the only way I was getting the radiation done Friday. I was incoherent and in-and-out of consciousness all day. Pretty damn debilitated and I stayed that way most of Saturday. I really had a tough time getting the pain meds passed through my system. I am not a good candidate for opioid addiction because I wouldn't be able to leave the house. I really spent the entire weekend being lethargic.

By late Sunday I finally felt better.

Lesson learned.

Steve Daniels

Treatment Day 2...33 to go.

1 min read

I was a little worried that I would be nauseous, despite all the medication, but woke up feeling fine. I got up early and took Geoff to school and made it to work before 8am. Not bad for a cancer patient! 

I think I might have overdone it on the water today. I had 140oz by 2:30pm and it really made me feel water-logged. Keeping hydrated is important but there are probably some limits.

The radiation was quick and painless again. It was good to have a simple day because tomorrow I have to be at the surgery center at 6am to get my PEG tube. I am hoping to use it as little as possible but better to be prepared. 

Day 2 of the countdown calendar was another delicious York's patty. One more day and then the weekend to recover. Keep on trucking.