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!
Advertisements

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.

Lawrence Schkade… “The Great One” has passed

  1. Lawrence Schkade… I learned today that “The Great One” has passed…schkade
    1. In 1992, I went to London and England for the Christmas Holiday to visit my sister and explore the ol’ country… Upon my return, I called Schkade to check on him. His health had been declining and during my frequent visits before departing, we had discussed the meaning of life, faith in God, and hundreds of other topics while he put his life in order as his heart was failing. One of his tasks was to assign me, one of his students to another Supervising Professor (Pete Mykytyn). Before I left, even his voice was weak. He spoke in a whisper. When I got back from London mid-January and called to check in with him, he answered the phone (which surprised me). His voice was substantially better. I asked how he was. He told me “I’ve had a change of heart…” to which I responded, “I don’t understand.” That was when he told me that weeks before the pager he carried to alert him of the surgical team receiving a heart from a donor had gone off at something like 1:15am and that he had driven to the hospital (as I recall) in his pajamas to have his heart replaced.
    2. Here was a man on the threshold of death who never once suggested that things were not going well, but was always ready to engage a student on whatever topic fit the moment… While we students were in his classes, someone labeled him as “The Great One,” and for those of us who lived from day to day in fear of being judged next to his incredible intellect… I kept thinking that one day he would just announce to the world that “Lundin, you’re as dumb as a stump” …but it never happened. He engaged each at their own level and on their own topics and blessed them with thoughts and perspective which has guided me to this day. I only hope that I can bless a fraction of the people that he blessed during his time with us. What an inspiration, and on so many dimensions.
    3. Tonight I called his number and the recording stated that the number “was no longer in service” (and that did not surprise me). A quick search found his obituary… An inspiration, a mentor, an example… a blessing to us all, and now he has passed his example of compassion and intellectual community onto new generations. May we begin to be worthy of being his students….

Can I trust my Amazon Echo or Google Home?

…first let me disclaim that I have two of each of the above devices and have no qualms about what *might* be captured even *if* the microphone was left on all the time… now if I were hatching some illegal plot, this would probably not be the case… google-smart-assistants-ga3a00417a14-64_1000

To actually look into this question, I like to check with a source that is both ‘in the space’ of protecting me, and ‘to whom’ I am paying for protection already. In my case that would be Symantec (Norton). I frequently joke that I pay more money to Symantec to protect my many computers and mobile devices than *any* other software vendor. They are both effective and highly regarded, and have earned my trust and loyalty over many years (been a customer since the Peter Norton days about 25 years ago)

Sooo, here is what they say (and I consider this to be a report that I have indirectly paid for them to provide), so I am believing this much more than all the other wagging tongues on the internet… *especially* when you get to the “configuration tips” toward the end of the article…

https://www.symantec.com/blogs/threat-intelligence/security-voice-activated-smart-speakers

Configuration tips

  • Be careful about which accounts you connect to your voice assistant. Maybe even create a new account if you do not need to use the calendar or address book.
  • For Google Home you can disable “personal results” from showing up.
  • Erase sensitive recordings from time to time, although this may degrade the quality of the service as it may hamper the device in “learning” how you speak.
  • If you are not using the voice assistant, mute it. Unfortunately, this can be inconvenient as most likely it will be switched off when you actually need it.
  • Turn off purchasing if not needed or set a purchase password.
  • Pay attention to notification emails, especially ones about new orders for goods or services.
  • Protect the service account linked to the device with a strong password and 2FA, where possible.
  • Use a WPA2 encrypted Wi-Fi network and not an open hotspot at home.
  • Create a guest Wi-Fi network for guests and unsecured IoT devices.
  • Where available lock the voice assistant down to your personal voice pattern.
  • Disable unused services.
  • Don’t use the voice assistant to remember sensitive information such as passwords or credit card numbers.

 

—It is, after all, just an “input device”… Just be sure that it is a *secure* input device!! …and don’t ‘input’ anything that you would not want to be remembered *forever*…  J

 

 

…a good prognosis but a difficult diagnosis for JHLundin part3

  1. 20171106 BlogPost JHLundin …a good prognosis but a difficult diagnosis for JHLundin part3… Visit to MDAnderson Cancer Center in Houston last week: diagnosis: Squamous cell carcinoma of oropharynx. November 6, 2017.
    1. Visit with Dr Gross who is focused on precisely the cancer that I have, about surgical and immunotherapy options for the best outcome (both with eradicating my cancer and with limiting the side effects from the treatments)
    2. CT scan to see precisely where the cancer is
    3. Visit with Dr Rosenthal head of the Head and Neck Radiation Oncology about radiation options post surgery
    4. Visit with Dr Chambers on the impact on my teeth to reduce the risks associated with radiation and surgery
    5. Visit with Dr Mott oncologist on the issues surrounding immunotherapy and the clinical trial that is currently in place that is targeted at exactly the cancer and cause that is my cancer.
    6. Signed the documents for the trial
      1. Two immunotherapy treatments that are one month apart Day 1 and Day 30, with an of the impact for the trial data collection and for assessment of the surgery and radiation treatments to follow
      2. surgery on Day 60
      3. Further treatments TBD (radiation//chemo)
    7. Had biopsy of tonsil taken before departure
    8. Return next week for first treatment
    9. This is precisely why I made the additional trip to Houston

…a good prognosis but a difficult diagnosis for JHLundin part2

  1. 20171025 to Charleston and return October 25, 2017
    1. Why is it that the path from A to B is never a straight line?
      1. The suggested therapy at MUSC is a traditional combination of surgery and radiation
        1. It will almost assuredly kill the cancer
        2. It will also have the traditional temporary and permanent side effects of a seven-week course of radiation therapy…
      2. At the suggestion of one cancer survivor, I started investigating MDAnderson, arguably the best cancer treatment facility in the country/world
        1. Dr Neil Gross at MDAnderson returned my call this morning and we discussed where I was… based on an article he had published a little more than a year ago about some of the surgical techniques he had been pioneering (TORS) to mitigate the side effects of traditional treatment (chemo, surgery, radiation) and improve outcomes. During the conversation, he put two more options on the treatment table (they are just ‘possibilities’ at this point):
          1. Immunotherapy: a technique to kinda supercharge the body’s own immune system to more aggressively attacking the cancer… but the process of boosting the immune system and targeting cancer cells is not nearly as toxic as the traditional chemotherapy that chemically attacks the cancer cells…   
          2. Proton therapy which uses a particle beam that is able to target and provide the optimal effect at a specified distance/depth which differs from traditional radiation which does damage both entering the body and leaving the body in addition to doing the targeted damage to the tumor itself.
          3. Both do less collateral damage and change the outcomes (i.e. radiation damages the salivary glands which produce the saliva that among many functions lubricates the food we eat and helps clean our teeth… Proton therapy would not damage the salivary glands)
          4. And both have clinical trials to find and treat patients within trial parameters
        2. This afternoon, I discussed this with Dr Neskey at MUSC.
          1. He knows of Dr Gross and uses his TORS surgery technique…
          2. He thought that I should check into the MDAnderson techniques… soooo, I don’t consider it a ‘second opinion’…
          3. I look at it as checking into a more advanced, but not nearly as proven a set of techniques that could possibly save a few of my teeth and lots of salivary glands… and a lot more… and a lot less.
          4. I put the process at MUSC on hold until I complete this research
        3. I now have an appointment for October 30- November 1 at MDAnderson in Houston, TX for up to a week of meeting and tests to explore these therapies… at this point, I am thinking that I will drive to Houston and find a convenient place to stay until I can learn enough to make an informed decision…
        4. Thanks Dave for remaining flexible in this last minute pursuit of a better solution… Health and happiness to you all,  J

…a good prognosis but a difficult diagnosis for JHLundin part1

  1. JHLundin prognosis October 12, 2017 (this is being posted on November 6, 2017, after my exploratory visit to MDAnderson last week).
    1. Recently found out that I will need to prepare and undergo two surgeries and seven weeks of radiation treatment to contain/control/cure tonsil cancer. This means treatments at MUSC every day, Monday through Friday plus the time to prepare and recover. That is a big block of time in a busy life! [update: I have since gone to MDAnderson and have a new treatment plan discussed in part3 of these blogs]
    2. The good news is:
      1. It is a P-16 positive cancer which improves the likelihood of a cure (if you are curious, you will have to do the research…)
      2. MUSC’s head & throat cancer facility is ranked #11 in the nation for ENT and #42 for cancer
      3. All the major specialists (surgeon, radiologist, oncologist) are talking about an 80% chance of cure (and in my reasoning, there is no 90-100% certainty, so this is as good as it gets)
      4. MUSC has a Hope Lodge where I can most probably reside while I am undergoing daily treatments in Charleston
    3. On the downside, there are no ‘good’ options, only ‘less bad’ options… and they have prepared me for all the bad stuff that can happen… and the process is not pretty. With radiation, there are functions that are permanently damaged and that never return… so the issues are
      1. Swallow and voice damage
      2. Muscle and bone damage
      3. Tooth abscess risk
      4. Fatigue, loss of saliva, taste, hearing… and much more
    4. Soooo, it sounds like this is about a two month+ process (prep for treatment, seven weeks of treatment, and the assurance that once treatment stops, there are still effects from the treatment for weeks). I will know more as I proceed in the process. I will be complying with the MUSC Tumor Board’s recommendations that will happen Monday (October 16th)… and will last from this week until about late December.
    5. And that means that I have to set some things down to open my schedule to be in Charleston pretty much all week every week and deal with the fatigue and other effects that such an insult to my system will cause: