2016/07/20 – ANNIVERSARIES

Yesterday I went to see Dr. S.  He confirmed that the tumor is growing and creating havoc with everything nearby.  One year ago today, he was the first to suspect cancer, took a fine needle aspiration (biopsy) and sent me for a CT scan.  I had noticed a stiffness in my right jaw a few weeks before, and seen my Primary Care Physician, who referred me to the head & neck surgeon, Dr. S.  The whirlwind of diagnostic procedures went into high gear that day, and by July 29th, my tonsils were gone, and the pathology on them confirmed cancer.  On August 17th, I saw the Tumor Board, who recommended chemo and radiation.  That began on September 16th.

The radiation destroyed both my Parotid glands, and my throat and mouth had not recovered from the various treatments, so I continued on a basically liquid diet.  On October 14th, a doctor in the cancer unit was alarmed that I had lost 30 pounds since the chemorad began, and sent me for a GI feeding tube.  Luckily, a nurse, seeing to me as we prepared for the operation, explained to me that the protein powder I had been using was for weight LOSS, not to maintain a healthy, normal body.  I changed my diet, and regained 16 pounds in a week. No GI tube.

The chemorad ended on November 3rd, and a few days before Christmas, I had a follow-up down at the cancer treatment center, which showed no signs of cancer.  Then about New Years, I noticed a lump under my right ear, behind my jaw.  By the middle of January, we knew that the cancer had returned, and I saw a bunch more specialists, who each looked for ways to finish off the cancer without finishing me off.  On March 12th, I discovered paralysis on the right side of my face.  On April 1st, my right vocal fold stopped working. More specialists, more scanning and prodding, and then I got my second Tumor Board on April 25th.  The news was grim.  The tumor was inoperable.  Because of it surrounding my vagus nerve and carotid artery, even trying would likely kill me. One small consolation was that with the tumor behaving as it was, the most likely way for me to die would be rupture of the carotid artery, killing me instantly and without me even knowing it was happening.

Once chemorad fails, more radiation is just not considered an option, so I was referred to chemo.  Dr. B prescribed a different chemo cocktail of three drugs, which kept me sick and in pain, but had some hope of succeeding where other treatments had failed. I kept losing weight, and eating was getting more difficult as the tumor swelled and pushed my jaw shut.  I finally gave in and had a GI tube installed.

The trio of poisons failed too, so now I am getting a different, extremely new drug, which is not completely through the FDA approval process. I’m settling into a routine of taking my meals through a tube, and trying to sleep with the pain in my right jaw and ear. My blood pressure falls unexpectedly every now and then, causing dizziness and disorientation, but I am learning to cope with it, and being careful not to stand and walk too suddenly.

It has been an amazing year.  I hope to look back on it a few years from now, as the worst year of my life.


2016/08/03 – Mixed Signs

The new immunotherapy is showing some promise. It is known that it sometimes causes a flare-up in tumor activity as it begins to work. My tumor has flared up. There is necrosis in one or more regions of the tumor, which is cancer cells dying. I hope this is the storm before the calm.

I have included here, for the incurably curious and strong of heart, a very graphic slideshow of the progress of the tumor.  Do NOT open it if you are at all squeamish.


Kaiser continues to support me admirably, with home health visits, supplies and equipment, weekly infusions to improve my hydration, and of course the help and advice of a slew of doctors, nurses, and others. The latest piece of equipment they have persuaded me to accept (at no direct cost to me) is an oxygen concentrator.  I have not had much trouble breathing, but there have been a few wheezing incidents (I believe mostly caused by drying in my bronchi) so now I have a “rescue inhaler” of albuterol (like used for asthma) and this miniature oxygen plant:

Oxygen Concentrator, Pump, etc.
Oxygen Concentrator, Pump, etc.

Air is about 70% Nitrogen and 20% oxygen, with the last 10% including CO2, water vapor, and various other gases. For decades, the most effective method of separating oxygen from air was cryogenically (super-low temperature/high pressure) and large industrial plants still use that method.  They liquefy the air, then gradually decrease the pressure/increase the temperature, to evaporate and collect each different gas separately. It’s called fractional distillation.  That is an expensive and dangerous method, because of the extreme pressures needed, but it works well at an industrial level. The concentrator does not liquefy and fractionate the gases. It uses a process called pressure swing adsorption (PSA) which involves pressurizing air to only about 20PSI (1.5 atmospheres)  in the presence of the mineral Zeolite. Under that small increase in pressure, Nitrogen sticks to the surface of Zeolite. That is called adsorption.  While the nitrogen is stuck to the surface of the Zeolite, the concentrator pumps out the oxygen and other gases,  then releases the nitrogen back to the atmosphere for another cycle.  With the nitrogen removed, what is left is  a mixture that is about 90% oxygen.  That’s good enough for medical use, so it is pumped out a tube to a nasal cannula, but Kaiser does not stop there.  They also supplied me with a pump that will take the oxygen-rich mix and pressurize it into a cylinder I can take with me outside the apartment, and an “emergency cylinder” that is quite large and high-pressure, in case the electricity goes out or the concentrator fails.  My tiny apartment is starting to look like a medical supply house, and the concentrator and pump heat my bedroom up 10° F higher than the rest of the apartment. Once the pumping fills both small cylinders, I will turn the machine off until I need it, which I hope will be NEVER. It’s taking days, but one cylinder is full, and the other one should be soon.

As for the immunotherapy, it’s a 3-week cycle, and I just had my second infusion on Tuesday the 26th.  We’ll assess the progress or lack thereof at time for my third infusion (August 16th) and if there is no improvement by the fourth infusion (September 6th) we will likely consider the immunotherapy to have failed, but there are already some good signs. I am very hopeful about this drug, and my having stabilized in most of my functioning.  There have been no new negative developments, other than the steady growth of the tumor outward, which in itself may mean that it has slowed or stopped its advance on my carotid artery and vagus nerve.

No new problems is good.  I’m encouraged.

2016/09/15 – THE GRIND

Had my third or fourth infusion of Pembrolizumab last week.  It may be working, so we are keeping at it.

A major chunk of my life is now a dance of four feedings a day, attempting to space them far enough apart so that I don’t have trouble keeping the stuff down, yet close enough that I can get a full night’s sleep.  The tumor has been changing very little, but my hearing has suffered (right ear canal squeezed shut by the tumor) I can only open my jaw less than half an inch, and I have pain 24/7.  Dr. B says that is not surprising, and consistent with the Pembrolizumab slowly adjusting my immune system to target the cancer cells.  If so, then within a few more months, we will see the tumor being de-bulked.  It may be very gradual, and may take several months or even a year to show substantial improvement, but I am holding my own, and plan to outlive this cancer by a couple of decades or more.  One thing I am looking forward to is the tumor shrinking enough to allow me to open my mouth more than 3/8” again.     That has not changed much in weeks.  When that turns around, and I am able to open this loud mouth more, the world is going to hear about it.

I have once more fine-tuned my feedings, and my taking of the myriad meds that are keeping me afloat.  On rising, I take liquid meds to quell acid reflux, bloating and nausea.    That is also when I take my liquid vitamins, since I am measuring 5mL and 10 mL volumes.  I let them work for 30 minute3s, and begin mixing my breakfast.  I have my other morning meds dissolved in a flask, and having soaked from the night before, they usually have very little undissolved solid. I pour that into the shaker, and bring it up to 8 oz., with coconut water (rich in Potassium) and add my 3.5 gm of fiber.  Then a can of Jevity nutrition shake brings it up to 16 oz. and it’s ready to mix.  Once the half hour has passed, and the meds have taken effect, I pour two ounces of coconut oil into the funnel/syringe, and it takes a while to go down. Then, I pour the mix, shaking it every so often, to keep the meds and fiber suspended. After that, I flush with the last 3 oz. of coconut water, and clean up. Then, if I have not already done so, I grind up and soak the next batch of meds.  Many of my pills must be cut in half or smaller to fit into the grinder, but it makes fine powder of them once it gets them in its jaws.  I also have a couple of gelatin capsules that I take, which I can open and just pour into the flask.  I use the same technique as I use with other things to keep them from getting lumpy: tiny bit of water first, thick paste, slurry, solution.  I let that sit until the next feeding, so it will be as thoroughly dissolved as possible.

The separate meds happen twice a day, and the nutrition four times a day.  Add dressing changes for the feeding tube and the tumor, and that all uses up a major chunk of my time.  Oh, yes – Pembrolizumab every three weeks, hydration for several hours twice a week, and visits with various doctors and nurses and whatnot…  I want to be DONE with this cancer!  I have other things to do!