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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

Treatment Days 4 & 5...30 to go

3 min read

It might have been the chemo.

But it was probably the surgery, anestesia, 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.

Steve Daniels

Treatment Day 1...34 to go.

3 min read

Quick orientation: I will be posting daily every day I have a treatment as long as I feel up to it. I plan to tough it out and get it done everyday. Intermittently, there will be other posts about the beginning of this process (before treatment started) mixed in.

My wife, Jennifer, is the best. I never doubt it but then there are days she leaves no doubt.

To make sure I got one more great meal before my taste buds - and possibly by desire to eat solid food - were affected, she made a reservation at Uchiko. We had a $25 gift card the delightful server at Uchi gave us after our anniversary dinner and it seemed like a great time to use it. I am constantly amazed that the service and generosity are somehow on par with the wonderful food.

Needless to say, dinner was superb and the company was better.

I made sure to get to bed at a decent time so I could get up early. We didn't want to be rushed with so much unknown to come, so we got up early. Some earlier than the others. Fed the dogs, got the kids out the door to the bus, and got Jen and I out the door in time for breakfast tacos on the way.

We had a quick conversation with our Medical Ocologist and headed back for the treatment. The chemotherapy couldn't have gone better. For the first couple of hours, it was anti-nausea and steroids. My sister-in-law, Cyndi, was a true G and brought us lunch. Shortly after, they hung the first bag of Chemo and that is when the anti-nause medicines did their job. I managed to fall asleep, REALLY asleep, for two hours. Woke up feeling great and just hung out and talked to Jen until the treatment was over.

We had to really hustle to get over to the Radiation treatment. They work closely together with the Chemo team and kept the lights on for us although we were running super late. Radiation was fast. Ten minutes of prep, twenty minutes of radiation. The entire machine rotates around me while I lay on a table, totally still. It is uncomfortable but that is a small price. My neck looks a till red where they were hitting me but could be a psychosomatic.

My neck - Day 1

The staff at Texas Oncology at the Ceder Park office and the Seton - Williamson County office are delightful. I really couldn't ask for more.

Treatment One Complete!

Time to come home and claim my treat.

The countdown

Peppermint is supposed to be really good for nausea. So, of course Jenni put York's Peppermint patty in envelope #35. Can't wait to see what is in #1.

Steve Daniels

No time wasted - Day 2

2 min read

While the ENT was looking down my throat, he noticed a cracked tooth and let me know that needed to go immediately.  Our dentist, Advanced Family Dentistry, only has an oral surgeon in every couple of weeks but they were able to find someone that could get me in at 8am the next day. AMAZING! The team there is awesome and I couldn't believe they were able to find someone so fast.

So, early the next morning, off to Oral Surgery Specialists of Austin we go. I had x-rays of my mouth and Dr. Largent took a look and reviewed them with me. Everything looked great except the one tooth. More good news. Dr. Largent was awesome. He spent his residency at a hospital where he was able to see a number of throat and neck cancers. He was very positive about the treatment and prognosis. More important, he was a no BS doctor that was really easy to talk to. I hate the dentist in the best of circumstances but he really made things easy.

After a quick exam, they prepped me for the extraction. Three shots of lidocaine to the surrounding area (I cannot lie: painful and terrible) and he went to work on the tooth. More good luck. The tooth didn't break and only took two or three minutes of work to get out. No infection, no complications. He spent a couple of minutes irrigating and cleaning it, gave me some gauze to bite on, and we were done.

I stopped by the front desk and scheduled the follow-up and spent the rest of the day recovering.

The moral of this story is: See your dentist. Don't be afraid. Bad oral health can have too many effects on your health and can delay treatment of more serious problems. Take care of your business.

Steve Daniels

No good way to say it...

5 min read

I have cancer.

 

I know I should call a bunch of people to let them know but saying it to someone the first time is really hard. I am a pretty emotional person and after a few test runs, I know how that turns out. ;(

So here it is: I have oropharyngeal Squamous Cell Carcinoma (OSCC) that appears to have started in my left tonsil. It is also in my lymph node next to the tonsil. That is all they see on the CT scan so let's hope that remains true after the PET scan.

Our Journey So Far

I had a physical a few weeks ago. Blood pressure was good. Blood looked better than it has in at least five years. The doctor said he thought I might have a little swelling in my tonsil and thought I should see an ENT doctor. Spring Break was coming so I scheduled it for the Monday after, back to back with my dermatologist visit. I have always expected any cancer scare to come from a dermatologist. Had a really positive exam and almost no worrrisome spots. A couple of small spots that had to be frozen but no biopsies.

I headed over to the ENT. Three minutes into the exam, he said, "That tonsil really worries me."  He poked and prodded a little then decided to take a better look with the scope. After a quick look he told me I also had a cracked tooth on that side. After feeling the lymph node on the left side, he said he was 75% sure it was cancerous. I had been sitting in the exam room less than ten minutes when he told me he was it was cancer. My head was spinning.

The next thing he did was the key to me keeping my head together. He said, 'It is probably cancer. You have never smoked or drank so the cure rate is very high, probably greater than 90%. If it is virus-positive, the outcomes are even better. Let's hope it is not cancer but we are going to start preparing like it is cancer.

He immediately:

  • ordered a stat CT scan
  • told me to get the tooth pulled as soon as I could
  • scheduled a follow up for Wednesday to biopsy the tonsil
  • called in referrals to a Radiation Oncologist and regular Oncologist

After scheduling the follow-up, I walked to my car and started the drive back to the house to tell Jennifer. I felt like the only person on the planet. I have never felt that isolated in my life. To get that kind of news and know you were 15 minutes from telling it to the most important person in your world...I felt like I was floating in space. Visions of Sandra Bullock in Gravity popped into my head. Luckily, I remembered to breathe before I passed out and drove my car in the ditch.

When Jennifer saw me, she immediately knew something was wrong. "Why are you home?"

I told her to come sit down and I talked. Then we cried. Then we cried some more. Then we started planning. What's next? Then what? Time to get moving.

I scheduled an appointment for my CT scan that afternoon. They were able to get me in quick. CT Scan...check. Meanwhile, while the ENT was looking at me with the scope he saw a cracked tooth and told me I should get that taken out as soon as possible. Can't start radiation if you don't have good oral health (a whole post about that later). I have never been diligent about dental appointments. I know it is stupid but I don't like them. Luckily, Jen and the kids are perfect patients and our dentist and staff love them. She called the scheudiling folks and, miraculously, the got me into an oral surgeon in South Austin for Tuesday morning. Amazing.

I headed out to the CT scan. In and out pretty quick. Found out I am not allergic to contrast dye. That is good news because I think there plenty of that in my future.

Back to the house in time to gather my thoughts for a bit before the kids arrived home from school. I was newly terrified at the idea of sharing this news with my kids. 

Sidebar: Jen and I had to have a really serious talk about whether to tell the kids or wait on the CT or biopsy. This was probably the toughest decision of the day. I knew they could handle but being a high school sophomore is incredibly high stress. Taking on this news was going to be tough. We have always tried to be as hones with our kids as we could. This was not the time to back away from that.

They arrived home and we tried to keep everything light. Jen was putting dinner together and they were snacking and unpacking. I couldn't have picked a worse moment. Just as Jen put our nachos in the oven, I started the conversation. It went pretty well. If you want to talk about it, reach out to me. The internet is not the place to discuss my kids' private lives.

But, in a moment of comedy relief, I said, "I think the nachos are burning." Truly a sitcom moment. Jen ran over and they were very crisp (a few of the chips were a little ashy around the edges). I think the laugh saved us all from many more tears. As we ate dinner, talked, laughed, and answered the kids' questions, I think we turned the corner toward working the plan. There will still be hard days and tears but Day 1 is in the books.

Steve Daniels

Test

Steve Daniels

After some quiet reflection and careful consideration of my words, last night's effort was hot, wet, putrid garbage. That is all.

Steve Daniels

The first O/S I ever booted on a computer was just updated. Wish I had a II GS to boot it up on now.

http://arstechnica.com/information-technology/2016/09/after-23-years-the-apple-ii-gets-another-os-up...

Steve Daniels

Finally getting a chance to sit down and watch Ex Machina. Also, probably, the first time I have actually made good use of Amazon Prime.