Day57 — Immunology Trial Debrief – on to Step2

  1. 20180111a Day57 — Immunology Trial Debrief
    1. -One very busy day that
      1. started with a 6am CT scan with an injection that caused the cancer to light up the scan to be compared to the beginning CT scan,
      2. three different blood draws [kinda thought my dipstick would show that at the end of the day, I was about a quart low!!],
      3. lots of surgery prep/instructions including
      4. the dental surgeon to fit me for a protective/guard to be sure that monstrous TORS robot does not do any damage to my remaining teeth (I am going to lose one tooth, #19, as a precautionary measure for this process),
      5. a session doing barium swallows for the completion of the immunotherapy trial (the “after” of the “before and after” that might show some difference/improvement although I have never experienced any difficulty swallowing), and
      6. finally, a debrief with my oncologist and his PA on the CT scan comparison before and after…
    2. The oncologist reported that the tonsil tumor size was reduced and that two of the three lymph nodes were smaller (one was just a little bigger) [here is a Q&A on tonsil cancer that briefly discusses the engagement of the lymph system], and his general statement was that “we made progress” in the fight by doing the immunotherapy trial. I would imagine that the nodes are the Tonsil and Tongue nodes below, but I don’t have the actual image. He also stated that there were reasons for lymph nodes to be larger that did not mean that the cancer had actually expanded. They will know when they assess the nodes after they have been removed.

  1. Now we go to surgery next Tuesday… I am quite confident with both the team and the plan… now we just need to execute the plan!!
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PolarisTech — Our Personalized Education Revolution is Coming Out of the Ground

  1. Our Personalized Education Revolution is Coming Out of the Ground!!
    1. -Join us in Ridgeland, SC for the PolarisTech Charter Groundbreaking! (read about PolarisTech at this link)

… I apologize that will be out of town, recuperating from cancer surgery on the 19th, but my heart will be with the PolarisTech Charter Board and our educational community during this milestone in Jasper County Education!

Day55 — Pre-Op Meeting with the Surgeon

  1. 20180108b Day55 Pre-op Meeting with the Surgeon
    1. It has been a busy day, and it is not even noon
    2. Meeting to approve all the tissue remaining from my surgery get anonymized and goes into the tissue bank for future research. I believe that part of the “community” that we strive for, is sharing things that can promote the quality of life (and the shortening the time to find a cure for cancer) within our communities. All my tissue will be identified with some big old primary key that insures my privacy… I hope it helps in some small way.
    3. Meeting to collect data for research… the building blocks of who I am… The nurse and I had a great conversation about the ability to be more precise in cancer treatment by knowing what treatments are most effective with which DNA profiles. Having a DNA database is critical to understanding and treating cancer and developing effective drugs for all sorts of disease.
      1. DNA swab
      2. Saliva sample
      3. Blood sample
    4. Discussion with my Surgeon’s Physician’s Assistant
      1. He stepped me through the procedure from the general assessment under anesthesia to the wake up with my feeding tube (which seems more precautionary in the event I am not able to swallow for whatever reason)…
      2. …and what equipment and other stuff will be hanging from my body for post surgery fluid collection (resulting from removal of lymph nodes)
      3. …and all the possible complications including the most severe…
    5. Discussion with the Surgeon
      1. We talked about the side effects of the immunotherapy trial that were listed in the Washington Post article as side effects of immunotherapy:
        1. 24 hours of diarrhea about 3-5 days after treatments. No medication.
        2. Iritis after both treatments about two weeks in, that required steroid eye drops to calm (6 days for first and 2 days after second)
        3. Persistent 3 day headache about day40 the was alleviated by one Tylenol 500mg
        4. Thermometer readings at left (cancerous) side under tongue were consistently 0.3 to 0.4 degrees higher than on the right side (so now when the nurses do my vitals, I have them use the right side to reduce temperature variation (today’s was 98.5) [the researcher in me wants to control for any outside influences that introduce unexplained variance into the data!!].
      2. He states that the tumor is substantially reduced by the immunotherapy treatment
      3. He had the photographer come in and take a quality image of my tonsil and surrounds
      4. He suggested that one possible favorable outcome of the immunotherapy and surgery might remove the need for any radiation […and although I am hopeful for this outcome, I am proceeding mentally on the assumption that there will be a radiation treatment]…
      5. My research shows that MDAnderson’s Dr Gross has been a pioneer in the TORS robotic surgery (link to more detail here) dating back to 2010… The challenge of doing surgery in the confines of the throat through the open mouth is daunting, but the robotic equipment focuses the function to the needed location through the mouth. I am very happy to have this equipment available and to have such an experienced surgeon (link to a TORS surgical outcomes article here)… I have an exceptional surgical team
    6. Tomorrow is lotsa lab work, blood, EKG, urine, internist to check my physiological readiness for surgery… T minus 8 days and counting… I am ready to go!

Cancer treatment getting personal — Pray for our cancer researchers

  1. 20180108c Cancer Treatments are Getting Personal
    1. Being in the middle of treatment, I see that cancer treatment is beginning to become personalized (see this article)… and we as a charter school startup (Polaris Tech) are doing much the same thing with personalized education.
    2. My first exploration into treatment was to MUSC where they suggested that there were two equally effective general treatment regimes: chemo+radiation or surgery+radiation. The most personalized piece was the recommendation that we not use the most promising of the chemo alternatives because of hearing loss (the chemo loss coupled with my current hearing loss would be most probably profound)…
    3. The next set of discussions with MDAnderson put two newer, and as far as my research showed, less damaging in the long term, treatments on the table: immunotherapy (a trial) and proton therapy (a less damaging type of radiation, that has fewer long term side effects like loss of siliva glands and removal of at risk teeth).
    4. And as recently as this morning, I agreed to submit my DNA, blood and personal tissue remaining from surgery to a research tissue and data banks for subsequent research to hopefully improve the statistical ‘power’ and hopefully show new and improved treatments for my type of cancer (p16 positive HNSCC)
    5. Like any treatments, there are risks associated with messing with the immune system (see this Washington Post article) and with irradiating the body… but the “progress to damage ratio” is getting better… and the prognosis for cancer continues to improve… Pray for our cancer researchers.

Hilton Head Island – Our Digital Future

A Telecommunications Plan Proposal: A Minority/Individual Report

for Hilton Head Island, SC Public Facilities Committee

… a comment

January 7, 2018

John H. Lundin, PhD

Smart Cities are so mainstream that the subject and services are a major part/theme of CES (link here)… Is Hilton Head Island even looking… or learning?

FireShot Capture 105 - - file____C__Users_JHLundin_Downloads_160520-GSA_The-Central-Role-of-Tele

Here is the link to this graphic… what is the probability that we have to achieve these objectives with our outdated telecommunications infrastructure?

HHI Telecommunications Proposal: An Individual Report

A Telecommunications Plan Proposal: A Minority/Individual Report

for Hilton Head Island, SC Public Facilities Committee

Part 1 of 2

by John H. Lundin, PhD

December 2017 — January 2018

© Copyright John H Lundin 2017-18

20180102b

“The legitimate object of government, is to do for a community of people, whatever they need to have done, but can not do, at all, or can not, so well do, for themselves in their separate, and individual capacities.” –Abraham Lincoln

  1. The story of the power generation turbine consultant
  2. Who is Hilton Head Island’s Jory Wolf?
  3. The best document for a community like Hilton Head Island to become ‘World Class’ telecommunications for residents, businesses, organizations, and visitors
    1. The Next Generation Connectivity Handbook: a Guide for Community Leaders Seeking Affordable Abundant Bandwidth [v2] is a comprehensive guide for communities who want better broadband for their residents, businesses, and community institutions
      1. “The University Community Next Generation Innovation Project, or Gig.U, is a broad-based group of over 30 leading research universities from across the United States. Drawing on America’s rich history of community-led innovation in research and entrepreneurship, Gig.U seeks to accelerate the deployment of ultra high-speed networks to leading U.S. universities and their surrounding communities.
    2. Interactive map of communities who are aggressively investing in Internet
      1. MuniNetworks.org, provide[s] resources for those joining the movement to build broadband networks that are directly accountable to the communities they serve. Case studies, fact sheets, and video are some of the media we offer to help leaders make decisions about community owned networks. We strive to offer resources for informed decisions because we know each community is unique. Telecommunications infrastructure is essential to the health and vitality of a community. Networks must be accountable first to the needs of the community, not the short-term interests of shareholders.

  1. The best example of a similar community (Santa Monica, CA: 90,000 beach community) who has their collective act together, and from which HHI can learn
    1. What can be done by a municipality
    2. Who can drive these objectives and changes
    3. Where the resources can come from
    4. How the finances are not as daunting as everybody imagines
    5. What issues, mistakes, lessons have been learned
    6. Here is their current operating budget
    7. Here is a brief on the new Santa Monica CIO
    8. …is it the only case example? Of course not… but educationally it is the best place to start (it has all the pieces)… from here we can go to NCNGN… but that is regional.
  2. The legal hurdles in place from the ISP incumbents and States
    1. Recent news in the battle of municipalities providing internet services
  3. The next steps for HHI Public Facilities Committee:
    1. Start at page 25 of the Handbook above:
    2. Determine who both understands the telecom problem space and the Town’s objectives, and can generate tactical and operational plans to make it happen (that is HHI’s Jory Wolf)
    3. Start the verbal promotion of being a ‘world class’ telecommunications community […or as I like to call it “a connected island”]
      1. A world-leading broadband network is necessary for a community to thrive in the future
      2. The broadband status quo is unacceptable
      3. Our community needs to have the kind of broadband that other communities have (Handbook p. 35)
  4. So, where are Santa Monica’s telecom services?
    1. Free public beach WiFi is multi-megabit

  1. Residential services is 10 gigabit
  2. Commercial services is 100 gigabit
  3. …and they are not stopping and waiting for HHI to catch up. And with a staff of 52 they have graduated from just telecommunications infrastructure to information services
  4. How far behind are we? …Well, they started in 1996 [please note on page “63” Santa Monica initiates their telecommunications plan with a map of the city facilities], so HHI is 20 years behind Santa Monica (but it won’t take us 20 years to catch up… *if* we have an effective plan).

  1. If we want partners, who are the candidates, and how can they be motivated?
  2. HHI needs to put the stakes into the ground and find out each of the partner candidates would get us from here to there: RFI or RFP
  3. Prioritize Information Technology infrastructure in the Town bureaucracy and staff it with personnel who really understand the future and can effect the changes necessary to make a ‘world class’ infrastructure happen
  4. This Telecommunications infrastructure is but one facet/dimension of a full “Digital Plan” which would address the digital future of the Town of Hilton Head Island, much larger and broader scope than just the Telecommunications infrastructure… Where do we want to be in the digital future that is upon us today and whose leaders are speeding away, increasing their lead every day?
  5. …in three years, 2020-2021 we should be where Santa Monica is *today*… and in ten years, we should be at 10x those numbers.
    1. Technology Infrastructure is a *journey* not a *destination*…
    2. It will *never* be ‘done’
    3. The public perception of ‘how we are doing’ will be based on
      1. How advanced our internet services are compared to other experiences (not to beachfront comparables)
      2. How good our plan to improve IT Infrastructure (and services) are…
      3. How well we are able to execute our plan for improved services
      4. …not on the hollow promises and media hype of the incumbent ISPs
        1. I have two wired internet options
          1. The phone company who is advertising “dig the gig” while I can get max 30Mb/s until they overbuild this high-density commercial/residential neighborhood with fiber…
          2. The cable company who had promised 300Mb/s for last fall, until it was purchased, and now the only option is 60Mb/s [MAXX is off the table]… the irony is they could give me 600Mb/s and more (DOCSIS 3.0) *tomorrow* with their infrastructure [why they don’t, I do not have a clue]
          3. Where is wireless WiFi?
  1. So, if you really want to know how much this proposal/report was worth… $150,500(y-1976)/20
  2. Finally, a Telecommunications Plan should be an integral part of a Digital Plan, which should be part of a Smart Cities initiative. The digital world has passed us by, and is moving away at light speed… As an elite community, we have no chance of being competitive without effective planning and powerful execution.

Day49 – transition from immunotherapy to surgery treatments

  1. 20180102 Day49 transition from immunotherapy to surgery treatments
    1. Well, the next two weeks will complete my immunotherapy trial that hopefully reduced the size and scope of my tonsil cancer, making the surgery to remove the cancer less extensive than prior to the therapy trial. I have little indication about how well this has worked because I only have one sensation that is probably an indication of my tonsil tumor (it feels like I have a small piece of nut stuck at the back left of my tongue. During my visits next week, they will run me through the CT scanner to measure the size of the tumors that remain on the scan… and collect other empirical data to show the level of effectiveness after the 60 day trial period. Here is an example scan that is probably similar to mine…
    2. Immediately following the trial completion, I have pre-op appointments with the surgical team to assess and scope the surgical parameters and learn the post-operative recovery procedures. I also put the final touches on the logistics of the recovery period. My understanding is that I will spend 3-5 days in the hospital to recuperate from the surgery and learn how to use the reduced throat parts that are integral to the swallow process (back of the tongue and soft palate for starters) and learn how to deal with the swallow pain of the tonsillectomy. After I am released, I will stay in Houston for an additional week so that the surgeon can have a final look before I head back to HHI.
    3. I check into MDAnderson on the morning of the sixteenth for surgery. Brother Dave will be in Houston for the early days and sister Ruth will be there for the later days and the trip back to HHI. Thanks Sibs.
    4. At this point, step3 will most likely be proton radiation treatment post-surgery, but I am not sure about the timing and duration of that protocol.