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!

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Day65 — Discharge Day PostSurgery Day4

  1. Day65 — Discharge Day PostSurgery Day4
    1. Prepping for graduating from this education/adventure/procedure
      1. Picked up a sack full of medications for my next weeks recuperating… all of my experienced survivors tell me that these next weeks is one of the greatest pain in swallowing because of the removal of the tonsil and parts of the back of the tongue.
      2. Ventured out to the cafeteria for breakfast rather than dine in my room 1103… got two sausage patties (a big adventure) and a big bowl of oatmeal (more my speed) with some real coffee. Bites of food are small and slow and need to be carefully chewed on the right side of my mouth, because the left side is the side where the tonsil, tooth, and parts of the back tongue were removed, so I have much less control in coursing the food down the correct tube (remember there are two tubes, one goes to the stomach and the other to the lungs… and I put some scrambled eggs down the windpipe yesterday morning, and that did not work well!!)… and then it is off to the bathroom to swish with a solution of salt and baking soda (instead of brushing with toothpaste).
      3. I am beginning to get instructions for the near term.
        1. The larger one is the catheter that drains the fluid from the incision in my neck where the surgeon removed my lymph nodes (I won’t show you that image unless you specifically ask). They want to have some place for the fluids to go so they don’t pool in the neck… and that requires a little reservoir to collect and measure the amount to know when it can come out
        2. And all 5 of my medications… the nurses have been firing all the medication names at me along with the associated function… but I still have not matched all the names with the functions (kinda like the exam questions of matching the entries in column 1 with the definitions in column 2…
        3. And then there are the exercises for week 1, week 2 and week 3+… nothing too strenuous, but using the range of motion that promotes healing and blood flow… and gets me off my fat little bottom…
      4. And at some point today they boot me outa here and I will take up residence for the next week across the street
        1. first in the Rotary House (yes there is a Rotary connection, but I don’t know all the story) which is owned by MDAnderson and managed by Marriott, so it is a great place to re-establish life outside the hospital

  1. before I head down the street to the Extended Stay America (read: much more reasonable, but not nearly as nice) for another week so I can be in touch with rehab and follow up appointments before heading back to HHI…

A couple of shots of the Rotary House Lobby… catering to MDAnderson cancer patients…

Day64 PostSurgery Day3

  1. Day64 PostSurgery Day3
    1. -Yesterday evening after days of being fed through a feeding tube down my nose and experimenting with clear liquids and applesauce to test my swallowing function, the swallow specialist put me on a “modified mechanical” diet which had some real food. Here’s what I had for dinner last night:
      1. Pureed prime rib… it tasted OK, but looked like a hockey puck… but with a little water, it slid right down
      2. Cranberry sauce worked fine
      3. Giblet gravy (I was looking for the caloric intake of protein)
      4. Refried beans, were a little too spicy
      5. Chocolate pudding
      6. Banana smoothie: a little more texture helps the swallow process
    2. First thing this morning my dietician was happy with my progress with solid food and removed my feeding tube [I call it a graduation to solid foods]… but all is not perfect. For breakfast, I had scrambled eggs, and they did not work well. I had difficulty getting them down the food channel and wound up inhaling some of the eggs and spent the next few minutes coughing up these eggs from my lungs. I learned I needed stuff that kinda sticks together and not stuff that is light and stays in pieces…
    3. The view at the foot of my bed… everything that I need to know!

  1. The good news at this point is the pain of the tonsillectomy and part of the tongue removal is controlled, but I am told that they can’t medicate me at home like they do in the hospital… and to expect the pain to be worse, and to taper off over time… the four survivors of this cancer that I have talked to have all stated that the tonsillectomy is the worst part of the whole process…
  2. …and I am getting released tomorrow (Friday), but will remain for another week for follow up appointments and therapy. Everything is going to plan to this point…

Day63 PostSurgery Day2

  1. Day63 PostSurgery Day2
    1. -well, yesterday at 5:15am I checked in for surgery, and the procedure started shortly after 7am… needless to say that the next thing that I remember is 4pm
    2. …My surgeon had already stopped by to visit with my brother Dave and the report was favorable, but I have not spoken to him yet…
    3. There has been a parade of follow up visits
      1. The dietician has recommended the feeding and that the surgeon installed and clear liquids until a swallow diagnosis has been done by the Speech Therapist.
      2. Speech Therapy that worked on my swallow which has been altered. Worked with water, applesauce and fruit cup while the therapist felt different parts of my swallow process.

  1. Occupational therapist who worked on general mobility and gave me a walk around the recovery area and a dozen exercises to do three times a day
  2. Nurses for my feeding tube, pain control, restroom excursions etc.

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!!

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!