Wednesday, 2015/8/26 ~ Tuesday, 2015/9/1 – Upsetting Revelations

Wednesday, 8/26

The Medical Oncologist (chemotherapy expert) in Lancaster gave me some difficult news. The radiation is going to do some things I had not anticipated fully, and the chemotherapy is going to be much worse than I understood, from what I had originally been told. He advised me to get the chemotherapy done in Los Angeles, where the radiation can be done immediately afterward, so I got an appointment to see the Medical Oncologist down there.

Apparently, the chemotherapy they will be using is more aggressive than usually used on this particular type and location of cancer, in the hope that it will combine with the radiation to make an absolutely complete cure, with no chance of recurrence. The plan is to weaken the cancer, and strengthen the healthy cells nearby, make the cancer more susceptible to the radiation while protecting the healthy cells, and to target the very short-wavelength (read narrow and accurate) X-rays very precisely, to kill the cancer but leave as much as possible of the healthy tissue alone. The radiation will scramble the DNA of the cancer cells, so they cannot reproduce or continue to regenerate. The linear accelerator is the newest and best IMRT (Intensity-Modulated Radiation Therapy) and uses Smart Arc programmed control, to adjust the beam more accurately, and offer the best chance to cure, with the least collateral damage. The radiation damage on my  neck, and the stripe through my beard where the hair doesn’t grow during the treatments are unavoidable. Of course, the chemo may make my hair fall out anyway, so a stripe through my beard will not be much of an issue.

A hypnotic video on how Linac works:
[Some of the stuff, especially after about 7:00 is specific to one manufacturer and model (Elekta Synergy) but most of it is exactly what Kaiser’s Linacs are like too.]

A deeper delve into radiation therapy equipment, which fascinated this lifelong science nerd and electronics/computer instructor:

Here’s a slide show created for the U. S. DOE Department Of Energy) to accompany a talk given on Linacs. The actual talk is not there, and it points heavily toward charged-particle therapy (which is not what I am getting) but some of the history and forecasting are enlightening:

I am having a dizzying series of appointments to see various different doctors, all of whom will be co-operating to kill the cancer without killing me… too much… The plan is to kill me mostly, but the cancer completely, and then bring me back. Think Princess Bride, when Wesley was “mostly dead.” All of these appointments are now “Down Below,” in the Los Angeles metroplex. That’s where they will be pumping me full of poison (Cisplatin) and shooting death rays through my neck and jaw.

Tuesday, 9/1

I went to UCLA dental again, to get the fluoride trays, and later that morning, to see the Medical Oncologist at the main facility in Los Angeles, to learn about diet, and a lot of other stuff to do with the chemotherapy. A couple of days later (Thursday, 9/3) I will go to have a rigid plastic web mask made to hold my head absolutely still during the irradiation, and have a PET scan done to get the most precise possible picture of where they need to irradiate, and where they can leave healthy tissue alone. It involves giving me an IV of radioactive sugar, which the cancer will gobble up greedily (much faster than healthy cells) and in that way mark the cancer very clearly for them to target the radiation treatments precisely.

I am definitely going to hate having my head clamped to the table, and may need Ativan or Valium to keep from doing something both embarrassing and dangerous. I have never dealt well with being immobilized, and in the last few years it has been worse. The day after the PET scan (Friday, 9/4) I will see the Radiation Oncologist (captain of my team) to plan the actual treatments. It will almost surely be 7 weeks of radiation, Monday through Friday, with the Cisplatin being infused intravenously three times, spaced throughout the treatment period.

2016/07/04 – ISO wish my timing were better

2016/007/04 – ISO wish my timing were better

This tube feeding is a VERY frustrating business. The tube sticks out of my upper abdomen about a foot and a half. It has a plastic clamp to seal it off, and an adapter at the end, which will receive the business end of either a regular syringe, or a big 60mL syringe with a big nozzle. Neither of them has any provision to lock the syringe to the tube. Friction only.  Are they that stupid?  Really??  To add insult to injury, they automatically included with my liquid food, a box of hang bags like IV bags, with LOCKING CONNECTORS!  In order to fit the joke I have hanging from my side, it requires an adaptor (see photo) and it tightens my jaw every time I use it.  I have had several very messy and stressful malfunctions, getting not only food, but stomach acid, all over myself.  There is an entire system designed, built, and sold and used, to connect the bag to a tiny button on the abdomen, locking it in place during the feeding, and then toss the dirty stuff, leaving just the button on the surface of the abdomen.  https://youtu.be/8WKgKJ66mk8 Why the HELL don’t I have THAT instead of THIS kludge?  This business hanging off my side and hurting and flopping around is nothing but a hasty lash-up.  We’ve had the technology to do it right for decades.  I’m disgusted and angry.  www.safeenteralconnections.com

Now that I have the tube I have, I am not eager to go back in for anesthesia and endoscopy and such, but I am really upset about the impracticality of what they installed.

If only ISO happened on schedule!
If only ISO happened on schedule!

The system they sent with the bags has a locking connector and – believe it or not – an adapter, to fit my outdated tube.  Turns out that I got my tube just a little too soon. The old system is supposed to have been phased out and unavailable as of January, 2016, but of course, things are running behind. http://www.medline.com/pages/enfit Instead I get the kludge.

At least I have discovered products that will flow through the narrow tubing, yet give me lots of calories.  I now put a cup of whole milk into a shaker, with an ounce of fiber, and add a cup of Jevity 1.5, to make the main mix. First I pour two ounces of coconut oil down the tube, and then follow it with the mix.  No more gagging and choking on the thick stuff I used to mix up.  That is a definite improvement. I have managed to obtain many of my meds in liquid form, allowing me to add them to the mix, but then there are the pills.  I was using a plastic pill crusher I bought at the pharmacy, but it was not much use.  I bought a coffee mill (a real grinder, with ceramic mill parts) and it does an admirable job. Now I strain out the shards of enteric coatings with a tea strainer, and down it all goes.

Another item of very encouraging news: no more Cetuximab or the other two chemo drugs I was getting… because they didn’t work.  Instead now I will get a new drug beginning Tuesday (2016/07/05) which works differently.  It is considered an immunotherapy, because it aids the immune system instead of suppressing it.  Hallelujah!  The new drug is called Pembrolizumab (Brand name Keytruda) and it binds to a site on cancer cells that triggers them to self-destruct (apoptose) as they should have done the moment they became zombies.  I have a lot of hope for this one, especially since it is not poison.  Maybe this brand-new drug (only barely approved by the FDA) will be the key.  Goodness knows I could use a key.