Day112 — The Proton Therapy part of the treatment for Step3

  1. Day112 — The Proton Therapy part of the treatment for Step3
    1. The physics and the reason I pushed for proton therapy (MDAnderson video)
    2. “Imagine a 196-ton, cancer-killing machine that can target a patient’s tumor with sub-millimeter precision while sparing nearby healthy tissues and minimizing side effects. In its most simple terms, that’s proton therapy.”
    3. Tonight starts this treatment… where man meets machine… and gets basked with protons

Day111 — Step3 a combination of proton radiation and chemotherapy starts tomorrow

  1. Day111 — Step3 a combination of proton radiation and chemotherapy starts tomorrow to clean up whatever cancer cells might remain for my HNSCC
    1. -Today was spent with the
      1. -Audiologist conducted a hearing test as a pre-chemotherapy benchmark so that any tests both during and after radiation and chemo therapies.
      2. Gastroenterology described the possibility of having to insert a feeding tube if I do not maintain my weight… I looked at it more for motivation to keep eating the levels my nutritionist will recommend (total protein and calories) than a big possibility.
      3. ORN (Osteoradionecrosis) Study (pre, during, post) MRIs. I signed up to allow a research study to collect data on my radiation’s impact on one of the more serious possible side effects, the death of part(s) of the jawbone. Research needs both side effects, ORN and Non-ORN, to learn the likelihood of side effects for the next HNSCC cancer patients. We patients need to contribute to the research for the future advances in the treatment and defeat of cancer.
    2. Tomorrow is
      1. Collecting of the dental stent that will hold my upper and lower teeth in the same position so the radiation will strike the exact same radiation targets every day
      2. First proton radiation treatment at 11:30pm… That device is *busy* so I get the last appointment time (let’s call it midnight)
    3. Wednesday starts the
      1. supplementary chemotherapy protocol… ideally, the chemo will weaken any remaining cancer cells (after the successful surgery mid-January… Step2) so that the radiation can kill all the remaining cells
      2. … the first day of my intensive prevention of mouth/throat side effects:
        1. Brushing after all meals
        2. Swishing with baking soda solution 6x per day to clean and adjust the pH in my mouth while reducing the sores and thick mucus that happens during radiation
        3. Daily fluoride treatments for the rest of my days…
      3. The first in-treatment meeting with my radiation oncologist
    4. Thursday is appointments to establish my protein and calorie intake with the nutritionist and adjustments to the radiation position with the proton therapy team…
    5. One busy week… one down and only five more to go!!

Day102 — two different visits: swallow evaluation and preparation for Step3- radiation and chemotherapy

  1. Day102 — two different visits: swallow evaluation and preparation for Step3 radiation and chemotherapy
    1. -Two weeks ago: the swallow instructions/tests are the same while sitting perched in front of the x-ray machine: ‘swallow this’….or ‘Chew and swallow this.’ Then they assess the video x-ray of the swallow process with my recently reconfigured tongue, tonsil, soft palate. They have done the same protocol twice before, so they have a baseline for the exact physiology of my swallow. The results are good for someone with the kind of recent surgery that removes some of the intricate parts of the swallow choreography that is the human swallow (as a systems guy, the swallow controls two critical inputs to the human body, it inputs the foods and liquids required and stops the input of air (when the two get confused you aspirate food into the windpipe… not good!)
      1. Here is a video of my post-TORS surgery swallow… It wasn’t this good immediately after surgery, but had improved markedly during the days before [my biggest food-based challenge had been a meatloaf sandwich two days before… the meatloaf was easy, the bread, even soaked in gravy, was difficult to swallow]. 

      2. And here is a review of the swallow outcomes after TORS surgery where Dr. Hutcheson (lead author) reviews the data.
    2. -This past week: was the preparation for Step3, a course of radiation and chemotherapy designed to eradicate any remaining cancer cells that remain. This process included:
      1. Education on what my tasks are to minimize the side effects of this treatment… it is an extensive list that starts with the obvious drink enough fluids and eat enough food, then moves to the less obvious brush, floss and rinse the mouth out with a baking soda solution to get the mouth back to the right pH (alkaline and not acidic), and many many more tasks (I am in the process of creating a daily chart that I will publish to this blog when it is finished)
      2. A team of four MDAnderson radiation oncologists including Dr Rosenthal put the scope up my nose to inspect the back of my throat to collaborate on the regions to be irradiated
      3. I was whisked away to “simulation” where they ‘set me up’ for the radiation process. I have a spine curvature that makes it quite impossible to lie flat on my back, so the team (all 6) worked to get my body elevated and aligned so that my important parts were precisely in place so that they could then put a custom fitted ‘mask’ over my face and throat and bolt it to the table so that my head and neck would be in exactly the correct and same position for each radiation treatment [don’t want to miss any important targets, nor do I want to irradiate any unnecessary parts]. They marked up my torso with alignment markings… and I will start the radiation treatment March 6 at 11:30pm [the proton therapy equipment is in high demand, and I am at the end of the line!]…
      4. During these processes, I was asked by the research arm of MDAnderson if I might be a candidate for a study of blood flow impact to the jaw (osteoradionecrosis (ORN) of the jaw is one of the most severe chronic side effects of RT to the head and neck region). This will require MRI scans before, during and after the radiation treatment. One of the reasons that I selected MDAnderson is because of their research, so I am now a part of this study. Any small contribution to the battle against this cancer and the improvement of the outcomes from the treatments makes the inconvenience of a thousand mile journey less taxing.

Day77 — Feeling better every day

  1. Day77 Feeling better every day
    1. -Now that I am back at home, my commitment to faster recuperation is that I leave myself time every afternoon for a nap… Well, yesterday I kept extending my afternoon nap until well into the evening… then became sleepy during the State of the Union and slept til 9am this morning. This was probably the most sleep in 24 hours that I have had in a long time… I chalk it up to recovering from the insult of surgery… but my body definitely needed it.
    2. And yesterday I had my first successful taste of real food. I had the staff at Frankie Bones toss their She-Crab Bisque into the blender… My was that good. The only ‘meals’ that I have been having are those ‘meal replacement’ shakes that try to smash a meal’s worth of nutrients into 10 or 12 ounces of chocolate or strawberry liquid. They do get old in a hurry… but a little low-country crab soup was a welcome departure…

  1. And I now have an industrial blender where I can make smoothies and other creative stuff blended to a point where it slides down easily, where I don’t have to chew or manipulate the content with much tongue action…
  2. Soooo, now being two weeks after surgery, I am still on liquids, but venturing into liquids with new content, and still sleeping and recuperating… getting ready for Step3: a course of radiation to finish the job of the immunotherapy, and surgery. At this point, even though there is still pain with the tonsil and tongue, and a long scar where the lymph nodes used to be, I am quite happy that I am on the downhill part of this process, and immensely thankful for all the love and support of my friends and family. Thank you all again and again!

Day71 — Dr Gross Surgery was a success

  1. Day71 — Dr. Gross TORS Surgery was a success…
    1. Thursday (today) for the post-surgical wrap-up
      1. Look at my throat… it continues to surprise me that every physician that wants to see my throat, pulls out their smartphone, snaps on the ‘flashlight application and says “Say ahhhhh.” Some actually have an LED miners’ light, but most just go with what they have in their pocket!
      2. Dr. Gross again stated that the cancer had grown farther into the tongue than anticipated, even though the immunotherapy had been effective in reducing it substantially, the clear margins during the operation were difficult to achieve…
      3. Currently, I am on a “modified mechanical” diet (meaning softer/easier to chew/swallow)… I did get adventuresome and ordered some whitefish at the cafeteria which I quickly regretted… while the slow chewing was not too painful, the manipulation of the chewed fish to the path to get it to a point where I could swallow it was really painful because of the changes to my tongue… it gets pretty frustrating seeing things and going “I should be able to eat that…” then after a few bites, realizing, this was a “bridge too far.” One surprise has be my tonsil that was removed has not experienced as much pain as I had thought based on the experience of other survivors… maybe the ‘best is yet to come.’ …We will see.
    2. Assessment of the removed tissue …the pathologies. Specimens came back from the Pathologist with good/clear margins, but Dr. Gross still wants to “sterilize the nodes” with radiation to reduce the possibility of recurrence which will require a course of radiation taking about ~6 weeks
    3. Had a little post surgery bleeding (scab loosened), but by the time I arrived there was a “durable clot” in place and no further action was required…
    4. Springtime in Texas will be my next visit to work on Step3 radiation treatment… While this is kind of inconvenient, I will be able to spend weekends in Dallas where I lived for 20+ years and have many friends…
    5. …and on a technology note, while I was in MDAnderson yesterday, their EMR System went “down.” They were unable to record all the many measurements directly to the patient’s medical record… so in 2018 MDAnderson had to go: “back to the past…” and manually record all the data, and then apply it when the system came back a couple hours later… The good news is that the professionals knew how to operate under “PlanB”… but they didn’t very much like having to go back to the old way. I never found out if this was some kind of test or an actual failure… but happening on a Wednesday at about 11am is a pretty busy time for any medical facility!!
    6. Headed back with my Sister Ruth the next couple of days. Mom sounded excited to have us coming back… and I am excited to get a little “normal” life back for a while… my biggest regret is not having finished the the big tub of ice cream in the freezer!!

Day68 — The halls of MDAnderson look different today…

  1. Day68 — The halls of MDAnderson look different today…
    1. After my discharge from surgery last Friday, I have just been staying in my hotel room and figuring out my medications and measuring and recording the fluid discharge from my incision, but today I returned to the Head and Neck Clinic to have the discharge reservoir removed from my chest. The halls seemed quite different today… up until this week, I had been a healthy and virtually symptom-free cancer patient. Today, however, I am among the ‘walking wounded’ in the halls of MD Anderson Cancer Center. I hurt. I am slightly disoriented from the pain medication. I am weak from not consuming enough to keep full strength. But while I am now feeling the impact of my cancer treatments, I know that this is and has been the plan from the beginning. Surgery was always going to be the primary treatment for removal of those cancerous areas that were not completely treated with immunotherapy…
    2. And each of the four cancer survivors that I spoke with confirmed that the post-surgery time was the worst period of the entire treatment. The removal of the tonsil and other tissue created pain and lifestyle issues that challenged the best, most optimistic attitude.
    3. Soooo, now I am one of the many cancer patients that is mid-treatment and suffering at some level… but recovering, and *that* is the objective. My prayers are with my fellow cancer patients to have the strength of spirit to overcome their individual challenges. Lord, help them overcome. Amen

You have questions about Polaris Tech Charter School… we have answers

  1. You have questions about Polaris Tech Charter School in Ridgeland, SC… we have answers
    1. -Well, we have now ‘broken ground’ on our Polaris Tech Charter School… that happened yesterday (more content to follow)
    2. -I will bet that you have lots of questions about how this new charter will advance the educational opportunities of our students. Here is a downloadable FAQ (frequently asked questions) which pulls lots of the details into one place for ‘the inquiring mind…
    3. …and here is the ‘about’ page on our website with our educational approach…
    4. We are pushing the boundaries of traditional education that include the specific personal challenges that each student brings to the academic environment and to the classroom and community
    5. We have an exceptional Steering Committee (here) that brings the many facets of this new style of outcome driven, personalized education to reality… Join us!