Wednesday, 2015/07/01 ~ 2015/09/30 -A Stiff Neck

ATTACK OF THE ZOMBIE TONSIL

Wednesday, 2015/07/01 ~ 2015/9/30

This is a moderately-detailed description of my experience with cancer. It began as a couple of updates to my immediate family on my progress, and has become a sort of journal. If it is TMI (Too Much Information) for you, it is quite sensible for you to quit reading it, or skip over whatever parts unsettle you, and of course I know that it will not be very interesting to most people, even some I hold dear, who only want to know that I am getting cured.

Until now, I’ve been informing only a few family members and a couple of close friends about what is going on as I learn more, but I‘ve decided to make the information more widely available here. This journal may sound clinical and detached, but my stoicism does not mean not caring or feeling. I am more frightened than I have ever been in my entire life. I simply prefer to have emotions rather than letting them have me, and to plan with both the worst and best possibilities in mind, so that as events unfold, I will be prepared to act effectively. Some information may change as this journal progresses, and I learn more, and plans are adjusted, but I will try to keep it as coherent as possible.

If I am in that relatively small group for which this condition is terminal, pain control has advanced to a stage where I will not have to suffer greatly. The odds are, however, very strong in favor of a complete cure within a few months. My medical coverage, my finances, and my responsibilities will allow for whatever treatment may be needed. I feel very fortunate to have been as healthy as I have for most of my life, and to have a good prognosis for this problem.

As I write this journal, I will generally divide it into days that mark significant events.   Since I did not decide to publish it until I was deep into the process, I will begin with a bunch of entries to catch up, but soon it will be more timely, usually a day or so after the events being described.

The first week of July, 2015

In the first week of July, I noticed a stiffness and swelling on the right side of my neck.   It was just below my right jaw joint (TemporoMandibular Joint, or TMJ). I made an appointment to see my primary care physician, Dr. L.

Friday, 2015/07/10 ~ Tuesday, 2015/07/20 – Is This Cancer?

Friday, 7/10: See Dr. L (Primary Care Physician)

By the day of the appointment with my primary care doctor, the swelling had become uncomfortable, but not painful – just sensitive.  This lady has been keeping me alive and healthy for decades, and she not only knows me, and medicine, and how to help me take care of myself, but she is a good friend and teacher.  Dr. L did a physical exam, ordered some blood tests to rule out tonsillitis and mumps, and referred me to a Head and Neck specialist. This is serious.

Monday, 7/19: See Head and Neck Surgeon

By the time of my appointment with Head & Neck Surgery, the swelling had begun to hurt frequently, a dull ache and stiffness. Dr. S is an incredibly warm, concerned, competent and clearly-spoken man. I feel very fortunate to have him helping me. He took needle biopsies and sent me for a CT scan. The biopsies came back inconclusive, but the CT scan strongly indicated a Squamous Cell Carcinoma, originating in my right tonsil, and metastasizing (spreading to organs separate from the initial growth) to several lymph nodes nearby, surrounding my carotid artery. Cancer. That’s when the DNA of a cell gets damaged, but instead of repairing itself or dying, the cell continues to grow and to reproduce more cells with similar damaged DNA, like a zombie. It actually happens a lot, in every person, but when their immune system does not recognize and destroy the renegade cells, it becomes cancer. More information on cancer in general: http://www.cancer.org/cancer/cancerbasics/what-is-cancer

 

Tuesday, 07/20: X-rays from my CT scan (Computer Tomography)

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A typical X-ray of me in coronal view (from in front of me) taken along with the CT scan on Wednesday, 7/22.

A coronal view, as if I had been sliced from top to bottom, about halfway through my body, and the front part removed, to expose this cross section. The yellow marks the area where there is cancer in my lymph nodes.

An axial view, as if they had cut off my head and you were looking at it from below. The yellow marks the area where there is cancer in my lymph nodes.

 

 

Monday, 2015/08/03 – Yup. Cancer

▲ BEFORE GENERAL ANESTHESIA, ▲
AN EKG ASSURES THE SURGICAL TEAM
THAT MY HEART CAN HANDLE THE PROCEDURE.

Wednesday, 07/29

My Head and Neck Surgeon removed both tonsils, plus the pillars that supported them, and a little extra near the base of each pillar, to try and get as much of the zombie tissue as possible. He sent them to the pathology lab to get a clearer diagnosis of exactly what is going on in my neck. The operation was far more involved than most tonsillectomies, because he had to remove more tissue that might be cancerous. It required general anesthesia, and was more painful and debilitating than I anticipated. My throat now works (and fails to work) differently than it did, and some of the dysfunction may be permanent. Even my right jaw is stiff and hurting, and will not allow me to open my mouth fully. I can’t bite a hamburger now, and may not be able to, for months, or forever. Some subtler and more frightening changes developed from the surgery and the cancer a few weeks later – more about them in another journal entry.

Monday, 08/03

The pathology report from the removed tonsils confirmed cancer. It had started in my right tonsil and spread to some nearby lymph nodes. Lymph nodes are a favorite destination for cancer to find new digs, when the home organ gets crowded. I had seen it coming, and was not surprised, but the chill sank deeper into my bones. Dr. S. gave me the best information he had, and what assurance he could, and set up an appointment with the cancer treatment facility Kaiser runs in Los Angeles. Patients and staff alike just call it Sunset, because the main hospital, around which a dozen or so of their buildings cluster, is on Sunset Blvd. in the belly of the beast.

Wednesday,2015/8/05 – Feed the Good Guys, not the Zombies

I soon learned that nutrition is tremendously important to both preventing and curing cancer. Here are some notes I gathered from various sources, in PDF form to read and download if you wish:

Here are the two tables of glycemic load data I created.  At the end is a resource for even more complete information.

Monday, 2015/8/17 – the Tumor Board

Monday, 8/17 I saw the “Tumor Board” at the main offices in Los Angeles

One doctor talked with me quite a bit, and explained a lot about the disease, the testing and preparation needed for treatment, and the treatment itself. After a bunch of thoroughly undignified and painful examinations, the board conferred for a couple of hours, and recommended more testing and scanning in preparation for the expected 6-week course of radiation and chemotherapy.

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Charlotte helped me ask the right questions, and understand some of Dr. K’s answers.

I have to get a special dental checkup to see if any of my teeth would interfere with the radiation getting to the cancer cells. I also need a PET scan, much like a regular CT scan, but with radioactive dye (Glucose with Fluorine 18 attached to it) in my blood to show the shape and position of the cancer cells, and the healthy cells nearby. For the PET scan and all following radiation treatments, my head must be immobilized with a mask like these:

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Claustrophobia inducers

The radiation used will be photonic, either Gamma rays, or X-rays. They are forms of electromagnetic radiant energy, of much shorter wavelengths and higher energy than light. It will give me a sunburn (actually a radiation wound, different from a burn) on both sides of my neck, and my right jaw. My specific type of cancer is particularly susceptible to photon radiation, allowing them to spare more healthy tissue nearby, while still degrading the DNA of the cancer cells, thus interrupting their ability to reproduce or regenerate. They will use a linear accelerator to generate and direct the photon beam. The type of machine chosen is IMRT (Intensity Modulated Radiation Therapy) because it is the least messy and most accurate. It is the least damaging of the rotational methods.   For the curious and technically oriented, more on types of radiation therapy:

Radiation Therapy: Which type is right for me? (OncoLink)

Types of radiation used to treat cancer (Amer.Cancer Soc.)

The preparations will take a few weeks, so the scheduler said that my radiation treatments are not likely to begin any sooner than September 16th. In the meantime, I am learning as much as I can about my condition and treatment, and doing what I can in terms of nutrition and fitness to prepare. Dr. K made it clear that the goal is a cure, not just an improvement, and that we have a very good chance of obtaining that result. It will not be pleasant, but it is do-able, and I am confident I have a great team helping me, and a very good prognosis. Dr. K says that I will die of something other than this cancer, whenever the time does arrive. That is my plan.

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.

Thursday, 2015/9/3~Tuesday, 2015/9/15 – I’m a Wuss

Thursday, 9/3

20150903_PETscanThe PET scan was a humbling experience. I took an Ativan to help me deal with my claustrophobia, and the injection of radioactive sugar was not bad at all. The two technicians were warm, very competent and knowledgeable, and willing to explain things to me, so when I lay down on the table for the scan, I felt like it would be OK. The PET scan doesn’t use X-rays like a CT scan. Instead, it depends on a radioactive tracer compound, which in my case was FDG (fluorodeoxyglucose) Radioactive Fluorine is attached to the glucose the cancer cells love,  making them basically glow with gamma rays. The Fluorine 18 emits positrons, the antimatter versions of electrons. When a positron hits an electron, the annihilation of the antimatter and matter meeting releases a pair of gamma rays.  The  scanner has a ring of phosphors that glow when struck by the twin gamma rays.  The computer calculates the location of the collision by the times the gamma rays reach the phosphors. Check it out:

The donut around my head for CT scans has been only about a foot thick at most, but the PET machine was several feet thick, placing me in a noisy, confining tube, almost as bad as an MRI. I am used to CT scans being very quick, so finding out that the whole process of the scan would involve both a 5-minute CT scan and then a much longer PET scan, about 30 minutes total, was disappointing – but I had a very positive attitude. Even learning that the immobilizer used that evening would not be permanent, and I would have to have another one made the next day, did not upset me… much… Then the preliminary CT scan took several minutes, and my heart began to pound and breathing quicken, but I held still and did not fight the clamps or the strait-jacket wrapped around my arms and torso. By the time they had started me on the actual PET scan, I was hyperventilating and my mind was racing, bouncing against too many thoughts all at once. Luckily, there is an intercom in the scanner, so I was able to get them to stop and let me take another Ativan. I was ashamed of my cowardice and lack of self-discipline, embarrassed at delaying the use of that important system while others waited, and horrified that I might lose control whenever we resumed. Once the second Ativan began working, we started over. This time, instead of binding my arms tight against my sides, they let me just tuck my hands under my butt. I breathed as steadily as I was able, and tried to meditate on being relaxed and still, resting where I was, and letting things just proceed. After the initial CT scan, the PET scan went in nine two-minute segments. I had to hold as still as possible for about 25 minutes, and even avoid breathing too hard, because that would blur the image. To most people, that probably sounds like a nice, relaxing nap, but for me it was a nightmare. I am very thankful I had a very good friend to greet me afterward and take me home, because I was a lump of jelly by that time.

Friday, 9/4

The “radiation planning” was once again nothing like I had anticipated. Instead of sitting down with the radiation oncologist whose name was on the appointment, and making some plan, it was another immobilizer (this time molded to my face in a permanent cast)  and another CT scan, to map out the tumors so the Radiation Planner could design a program for the Linac to use, to hit the cancer and spare the healthy tissue… as much as possible. I almost lost it when I found that I did not have my dental fluoride trays with me. I had packed carefully the night before, putting the trays in the bag I would take with me to the appointment, because I knew they were required to make the m1441411283010ask and do the scan. After entering the scan room, I looked for the trays and they were not in the bag.   I feared I might have dropped them on the sidewalk when getting in the car, but hoped they would be at home. Charlotte patiently drove me the 80 miles of LA freeways back to Lancaster, and I discovered the trays in the medicine cabinet. I had remembered to take them out and use them at bedtime, but forgotten to put them back in the bag. An hour later, back in LA, they injected me with Iodine for contrast and made the mask, and did another CT scan with it on, and sweet, patient Charlotte took me back to Lancaster.

If all goes as planned, my first dose of Cisplatin and Gamma rays will be Wednesday, Sept. 16th, and the last radiation on Tuesday, November 3rd. Maybe I will glow in the dark for Halloween! I believe that my Kaiser Permanente cancer team is the best, and best equipped, in the Western US, if not the world. I am taking an active role in preparing myself, mentally and physically, for the battle, and I plan to be cured of cancer, permanently, by Tuesday, November 3rd.

Tuesday, 9/15

In order to be at the Sunset Oncology-Hematology Dept at 9AM Wednesday for my first dose of chemotherapy (to be followed as closely as possible by radiation nearby) I had to go down the day before and spend the night. The madhouse that is the Los Angeles Metroplex does not allow one to simply calculate drive time and go, but one must also add hours to allow for the all-too-frequent accidents and road work that snarl traffic and delay thousands of unfortunate commuters. At least Kaiser has done a great deal to ease the troubles of those who live far away from their Linacs in the belly of the beast. They provide shuttle service for those who can go get irradiated and return home daily, and for those who need it, even some pleasant apartments in case the travel proves to be too much, on top of the ravages of chemo and radiation.

If I am able to do so, I will use the shuttle for 32 of my 35 days of radiation, but 3 of those days must include 6 hours of chemotherapy by in IV (IntraVenous Infusion) immediately before the Radiation Therapy. As Murphy’s Law warned us, the first day of radiation must also be the first day of chemo, and a long, tedious, complex ordeal. Though they have made laudable efforts to ease the frenzy, it is tremendously stressful for almost every patient, and that proved eminently true for me – and by extension, my amazingly patient and flexible wife, Charlotte. She has secured FMLA (Family and Medical Leave Act) time off for the chemo days, but could not take me to Sunset the day before, in time to meet the apartment manager and get keys, so I rode the shuttle down at noon.

Waiting for the shuttle with Jim, another radiation lover:

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Seven of us piled into a stretch van, and bounced down to Sunset. The trip was not bad, though we ran out of topics for conversation within the first half hour, and each retreated to our own thoughts. I imagine I will be getting a lot of writing done, and maybe some napping too, during the approximately 90 hours I will be shuttling in the next seven weeks. I am hoping that they have this thing ticking along like the well-oiled, finely-tuned system it appears to be.

Once at the Lair of the Linacs on Sunset, my fellow pilgrims and I went down to the basement to get nuked, but afterward, I caught another shuttle up the street to the apartments.

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The manager showed me around, gave me a rapid and comprehensive talk about parking, trash disposal, etc, and sped off to other duties, leaving me alone in the silence of the apartment. I surveyed the place which I hope not to need more than once or twice more. My situation and prospects remained nebulous, though I read all the handouts and took notes. I was numb, grasping for clarity and surety that eluded me. The apartment was nicer than my own, except that it was NOT my own, and I was not going to make it my own.

Charlotte joined me later in the evening, and we endured the unfamiliar surroundings and woke unrested, to face a very LONG and harrowing day.

Wednesday, 2015/9/16- Shuttlecraft, Poison, and Death Rays

Wednesday, 9/16

We caught a shuttle from the radiation building where we parked, over to the area where I was going to get chemo, and the driver made it plain that where he dropped us off was where we would be picked up later, for a ride from the chemo back to the Lair of the Linacs.  I had not thought to pack any food, so though the apartment has a nice kitchen, we had to eat in the cafeteria in the main hospital, which was not so good… hard to navigate and harder to find truly fresh, healthy food.

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We made our way up to the Oncology Hematology (chemotherapy) department, and they began their dance. After serving thousands of cancer patients, the team has developed an elaborate system to try and ease the process for the patient. Before delivering the chemotherapy drug itself, they begin with anti-emetics and anti-inflammatory drugs to reduce the side effects of the poison.

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Yes,those are my feet and face. No; the chemo did not stretch me like Silly Putty. It’s a panorama.

It involves hooking the patient up to an IV pump that meters the stuff in gradually, changing bags of fluids about a dozen times, and their SHOW. I called it a team, but it’s more like a league of teams, with several specialties within the department. Every step of the way, representatives of each team in the league came to explain what was happening: Infusion nurse…and another…and another… Doctor, Pharmacist, social worker… The reason for more than one nurse was that I had not kept myself well-hydrated, and my veins were “flat.” It took 5 agonizing needle expeditions and a warm pack to finally get the IV cannula into a vein. I am staying WELL HYDRATED from now on!

20150916_WithIV_1x1As the hours of infusions wore on, the nice Kaiser folks paraded past my curtained-off corner, full of information and professional concern. I asked questions, and took notes, and forced fluids, and the horror sank in, that I was now one of those pale persons we see being handled, supported, preserved… a project.

In spite of my having bungled the start of the infusions by not hydrating, they were done spot on 3PM, so I proceeded to the radiation treatment exactly as planned. It was scheduled for 3:20, and the shuttle could get us there in a matter of a few minutes. We had to pick up some new medications for pain and nausea, and chased around through three different pharmacies in the complex before getting them, but were still on track.

20150916_212950I called the transportation desk as we made our way down the elevator to the shuttle stop where we had been dropped off. Dispatch said the shuttle would be there in a couple of minutes. We sat on the bench… for 20 minutes… and the time of my radiation appointment passed. I called dispatch again. The shuttle was “on its way.” Another 20 minutes later, I called again. I had been told not to walk the half mile to radiation from chemo, because the medications would make me weak and susceptible to sunburn. It was becoming apparent that walking would have been less stressful than waiting and being late. I called Radiation Oncology, who said that they would nuke me whenever I got there, and that they understood about transportation troubles. I didn’t understand. After another pause, I called dispatch again, and queried the dispatcher more closely on the location, and was told that the driver had looked for us but not found us. We had been right there, at the exact spot where we had been told to wait. I went back into the main building, looking for the security guard I had seen on the way in, to verify the location. After several trips in the elevator, and some dithering around the fluorescent-lit halls, I found my way back to the parking. On the way back, I happened to notice another door into the parking structure, on the level below the one where we had been dropped off and told to wait. There was a shuttle stop sign on the pavement there. As I hurried back to where Charlotte was waiting, I called transportation, and asked on what level the shuttle stop was. The dispatcher told me it was on the FIRST level, and I explained that we had been waiting on the SECOND level, because that was where we had been dropped off and told to wait. He said he’d send the shuttle to the second level. I rushed up  there, to find Charlotte gone.   Who was orchestrating this madness? It was now over an HOUR past the time of my appointment, and I was less than a half mile away from it, waiting on a phantom shuttle bus! I phoned Charlotte – no answer. I called dispatch again, asking about my wife, and they had no clue… but then the shuttle pulled up. Charlotte was not in it, but I decided to proceed to Radiation. On the way, we saw her on the sidewalk, walking as we should have done from the start. By the time the shuttle had methodically regurgitated me in front of the building, Charlotte was at the reception counter, speaking with the clerk. I was an emotional shambles.   We went down to the waiting room for the Linacs, which was both very large, and nicely decorated. Impressive. It’s at least 200 feet long, and straight, though the panorama makes it look curved:

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My name came up on the annunciator quickly, and I went to meet the Linac. The Radiation Therapists were warm, understanding, and very efficient. The room was very calm, dimly-lit, and nicely appointed, as torture chambers go:

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I put in the Fluoride trays, to help keep my jaw properly aligned without grinding my teeth.  I lay down in the cross-hairs of 3 green lasers, to the sound of Creedence Clearwater Revival, and found that holding still wasn’t as difficult as I had feared it would be. They tattooed a 2mm dot onto my chest, to make sure they get my body in the same place every time, and left the room.

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The machine whirred and rotated and buzzed, and the Rolling Stones came on… and I was so tired I didn’t have the energy to panic.  It was over sooner than I had feared, and I left, encouraged that I could get through the series of 35 treatments without Ativan.

Thursday, 2015/9/17 – The Executioner’s Song

Every battle needs a sound track.  We are killing the cancer that is trying to kill me. The second day in the abattoir, I didn’t do so well.  I felt claustrophobic, and like I was suffocating.  I had to get the mask taken off, and sit up for a couple of minutes.  It was a different linac, but the room was almost identical, and  the radiation cycle was the same, and I cannot blame the therapists or the atmosphere… but maybe the music.  I certainly don’t want to admit that I am a panicky light-weight, so I’ll blame the music. It was Nashville Commercial Country, and not horrible, but far from my preference.  OK, so we’ll blame the music. Friday, I requested Chopin’s first piano concerto (E-minor) and it went better… so I’m sticking with the music like a Big League pitcher doing his ritual dance on the mound.

Here’s my radiation playlist:

Every week day, I’ll be adding a song or two, with the newest one at the beginning of the playlist.

Friday, 2015/10/9 – Hump Day in LinacLand

Wednesday (10/7) I had my second chemo infusion, and Friday (10/9) marks my 18th dose of radiation. That put me over the midway mark. I am half-way to November 3rd, my last dose of X-rays. The radiation burns on my neck and shoulders are getting pretty painful, all the time now. The chemo was another major evolution, requiring me to spend two nights in the apartment Kaiser so kindly supplied, so I could be at the lab at 7:30AM Wednesday and get my radiation about 4PM. I needed the labs to be done by 9AM, so we could start the 6 hours of infusions. Tuesday, I rode the van down to Sunset at noon, carrying a ridiculous amount of stuff (I’ll pack MUCH lighter if I have to do it again) and after getting nuked, I lugged it all to the apartment. That evening, I walked 0.6 miles to a supermarket to get filtered water and some protein drink, and discovered that 3½ gallons of water now weighs about five times as much as it did couple of months ago. I made it back, managed to keep the protein in my stomach, and crashed. The shuttle and the lab and waiting to be allowed into the clinic were not much trouble, and the infusion dance was not nearly as involved as the first one, since they had already given me my orientation. I even managed to get a little work done on the laptop, though of course the WiFi there is slooooowwww… but better than the total lack thereof in the apartment.

THE POLICE FORCE OF MY BODY IS UNDERSTAFFED

The blood test the morning of the chemo showed good levels of most nutrients, and good electrolyte balance, but a loss in lymphocytes (They hang out mostly in the Lymphatic system) a subset of leukocytes (white blood cells) including T cells, B cells, and NK, or Natural Killer cells) which are needed to fight infection and clean up waste. The NK’s are what will finish off any cancer cells left by the chemo and radiation.

MY ARMY OF IMMUNE SYSTEM CANCER KILLERS IS DYING BY THE BILLIONS.

Chemotherapy kills many of these very important cells, weakening the immune system. The problem is called Leukopenia. It is sometimes inaccurately referred to as the similar condition, Neutropenia, which is low levels of the neutrophils only.

Leukopenia is expected, and we have been preparing for it. I have to stringently avoid cutting myself, or otherwise exposing myself to infection. That’s difficult with my skin scarred from the radiation wounds, and having to go to the hospital every weekday, but I started with a very strong immune system, and am being careful.

The combination of radiation and chemo makes eating a major problem, with dry mouth, always tasting salty, difficulty in swallowing, and nausea. I tend to stay dehydrated, no matter how I try to force fluids, and that makes everything else difficult. The metallic, salty froth in my mouth makes the very idea of eating, or even drinking, repugnant. Even pure distilled water tastes like a salt marsh. Biotene helps for a few minutes at a time, but then getting nutrition into me and keeping it down remain a persistent issue. I have lost another 5 lbs., and I am getting really concerned.

By 4PM, I am full of platinum poison, and heading into the radiation room.  I describe a typical session and prattle on about the cool machinery in the next chapter:

Monday, 2015/10/12 – Over the Hump

Note: This post was originally the last half of the preceding one (dated 10/9) but I realized that the Hump Day post was entirely too long, and also wanted to be able to refer to it separately in reference to just the radiation portion of my therapy.

I’m learning more about radiation therapy, and settling into a routine for the treatments. As I wait for my name to come up on the annunciator, I get out my fluoride trays and write down the songs I want them to play that day during the treatment. The burns are now quite painful, and very visible. I have a red zone all the way around my neck, and in a ring around my Trapezius and upper chest, down past where my shirt collar is. They have told me to use absolutely nothing but 100% Aloe Vera gel on it, but that only makes it hurt worse.

The annunciator calls us to visit the Linacs

…so in I go, and find my therapists at the workstation in the hallway outside the treatment room. I must tell them my name and birth date, every day, to be sure it’s really me. Would not want to nuke the wrong guy in the wrong place… and they have my program up on the computer screens, and a pair of little video monitors to keep an eye on me while the rays are frying me.

A couple of the seven screens the therapists watch while I am being irradiated
A couple of the seven screens the threapists watch while I am being irradiated

Once inside the treatment room, I put my stuff on a shelf next to the sink, rinse my fluoride trays and put them in my mouth, and head for the Linac.

The therapist reminds me to leave my glasses behind (I forget almost every time) so I return and place them next to my bags, then get on the table. The therapist (or sometimes a pair of them) pull and push my body around on the gantry table, to line it up with a set of three lasers that locate it precisely, using a 2mm dot which was tattooed onto my chest at the first treatment. They place the mask over my face, and I have to make sure I am keeping my chin up and not fighting the mask, so my head will be exactly right. There is a wedge under my neck, to keep me firmly anchored in the mask. Lately, they have to shim that up because of my weight loss making my face thinner and not tight in the mask. Lying there on my back, I see the back-lit ceiling mural, and then the mask obstructs it, and I can only see things vaguely through the grid… oh, well, no glasses, any way.

CLICK TO VIEW GRAPHIC ALONE
THE CEILING ABOVE THE LINAC

Sometimes, the Linac’s head sits directly above me as the therapists are leaving the room, and I can see the pattern of the opening the X-rays come through, shaped as it will be for the start of the first dose.

THE COLLIMATOR
THE COLLIMATOR

The Linac I am usually under In is a Varian Clinac. Here’s a video of how it works:

SmartArc programmed control varies the shape of the aperture as it rotates the head around the patient, shaping the beam to the target at every angle.   That’s more accurate than the five-shot system described in the video.  Sometimes I go to the Trilogy system nearby.  It’s more accurate still, and quieter than the Clinac, but the ♪♫ music ♫♪♫ is not as good.

Once in a while, I can even see the leaves of the collimator (not the ones in the mural) sliding back and forth as the head passes over me. There are two passes, 360° each, in opposite directions, which have different collimator patterns to get different parts of the cancer. Each pass takes a couple of minutes, but all the setup and adjusting and safety protocols add a lot to that, making it take 15~30 minutes from arriving at the Linac, to leaving. More on the linac in another chapter, some directly from the Medical Physicist in charge of the death rays that are saving my life:

 

Thursday, 2015/10/22 – NO MORE CHEMO!!!!

I waited, and it’s not a hoax.  Dr. K called  today, and we talked a good long while.  He said that he is encouraged by my weight gain (14 lbs now since 10/14) and that the radiation is going well, and the team thinks it wiser not to pump any more poison into me.  I am going to get less nauseated sooner, and less tired, and less “chemo brain,” and it will be easier to stay fed and watered. I also won’t have to spend the nights of the 27th & 28th in LA!!!  Please ‘scuse me while I do my happy dance…. more later!

{BTW – the photo is of the re-usable plastic flatware that does not add to the metallic taste the chemo gives me, the way metal utensils can}

Wednesday, 2015/10/14 – Doctors can help, but healing is YOUR job.

 

Good advice in all of life, but particularly so if you are entering diagnosis of,  and treatment for, cancer:

Be proactive.

Get things that even MIGHT be an issue taken care of ASAP, before they get shoved aside by the onslaught of events and concerns that WILL be coming at you.    I should have had a nutrition consult BEFORE BEGINNING chemo. The issues I have had with swallowing ever since the tonsillectomy are serious, and interfere with my hydration and nutrition.  I should have insisted that they be addressed more effectively over a month ago, BEFORE they caused me to lose 30 lbs, weakened me, and almost made me get a hole in my abdomen for a GI tube. I just finally got the preliminary swallowing exam, which resulted in an appointment for a swallowing evaluation, to be done on my last day of radiation.  It should have happened before my first day.  I would not be sitting here dreading my next mixing and drinking of the truly nauseating weight gain shake, that is now the bulk of my daily diet.

I allowed my nutrition to get out of hand, and nearly paid for it by undergoing  a very unpleasant, painful, expensive, and dangerous surgical procedure. NO surgery is minor when one has Leukopenia and cannot fight off any infection.  I also allowed my radiation wounds to get to a truly horrible stage, before demanding something better than the 100% Aloe Vera gel I had been told was the ONLY thing I could use.  I can cite the scheduler dropping the ball. I was supposed to be seeing a radiation oncologist every Wednesday, but no-one told me so, and I did not see one for three weeks.  I can cite the lack of medical nutritional counseling, especially in the light of my having complained of trouble eating, and rapid weight loss. I can blame everyone but ME, but that would be false. I am the one who must survive, must heal, must cope with the hail storm of crap flying in my face, and I am the one who must make sure I have the help I need.  Doctors can help, but only I can heal.  I have asked a lot of questions, done a lot of research, come to understand many things, but I must also speak up when things are not working well.  I will not fail to be more vocal in the future.

I saw Dr. Z on 9/23, no-one on  9/30, and only Hematology Oncology on the 10/7, so when Dr. Z saw me again, on 10/14, I was a mess.  I had lost 30 lbs.  and my neck and shoulders were covered in open sores from the radiation. Dr. Z immediately prescribed Silvadene, (which I should have been using from the first open sore) and sent me to Urgent Care for a feeding tube.  Since I was about to have surgery on my stomach, I was NPO (Nil Per Ora, not allowed to eat or drink anything at all) and I was feeling like a dried-out, cotton-stuffed dummy.  It was about 3PM, and I had not eaten since 10:30 AM, and had not even drunk as much as I should have, anticipating food and drink when I got home at 4. I dutifully went to the ER Department, and checked in, and was placed in a room they called the Trauma Room. There I met RN A, a very, very astute nurse.  I told him what was happening, and he quickly and clearly explained that the protein powder which had been my entire diet for weeks was not for maintaining or gaining weight, but for LOSING weight.  He told me what  I could use to gain weight, and where to find it. At last! The information I needed, from a nurse rather than a doctor.  The Radiation Interventionist  (the person who would actually perform the surgery) finally appeared about 8PM, and after a quick consultation and exam, he and I agreed that the procedure would be  a serious mistake, and that I simply needed to drink the right stuff! This after being NPO for 10 hours, which only further exacerbated my malnutrition! I had long since missed my ride back to Lancaster, so had to take a taxi to the apartment.  I had no food in the apartment, so a little after 9PM, the Discharge Planner got something from the cafeteria: four tiny tubs of Jello (no nutrition at all, because it was not even gelatin, but carageenan which is basically mucilage), two 6-oz boxes of apple juice, and two 8-oz cartons of NO-FAT milk. Damned near NO NUTRITION AT ALL, only 350 calories.

I got it all in me, and went to bed, exhausted. In the morning, I went to Von’s, and searched for something with the sort of nutrition I needed, and was sorely disappointed. I need at least 2000 calories a day (preferably over 2500) and the best I found there was Ensure Complete, with 350 calories in a very pricey 8-oz bottle. That afternoon after the shuttle dropped me in Lancaster, I went straight to GNC, found the best weight gain shake I could, took it home, and went through the ordeal of trying to mix it and drink it. I had a terrible struggle with getting the stuff down and keeping it down, and with mixing it so it was palatable.  I did a slide show describing the elaborate method I finally developed for mixing the liquid diet up,  but since then, I have streamlined it greatly.

SHOW the ORIGINAL MIX METHOD...▼

I first just put the powder and some Omega-3-rich oil in a blender with whole milk, as the package instructed.  That produced over a quart of a foamy, nauseating stuff, which I was barely able to get into me over a period of several hours, and gave me distressing gas and bloating.  The entire volume of the mixture was foam, with tiny entrained bubbles  that stayed, even sitting in the fridge over night.  Then I tried adding things like Vanilla, dietary fiber (wheat dextrin), Coconut oil and Flax seed oil, Stevia, Hershey’s Dark Chocolate Syrup, Nescafé, Almond milk, and whole milk. I even added simethicone (the active ingredient in Gas-X) to try and reduce the foaming.  It got worse rather than better.  Then I decided to attack the foaming with a different mixing technique.  I used my shaker bottle with the dasher built in… no luck… then I finally hit on the key: It’s like glue or flour, so mix it that way.

Here is my [original] labor-intensive but successful method:

BTW –
DO NOT  mix powdered vitamin C with Ensure.
It will curdle and be truly emetic. ☺

UPDATE: I posted the now perfected method I use to make the weight-builder shake, with details on what I use and where it may be found.

Now that I have learned how to get the nutrition I need, I have gained back 16 of the 30 pounds I lost last month.

As for the Silvadene I should have been using since 9/23, it is working wonders on my radiation wounds, and ten days later, they are mostly healed.

Speak up.
Get what you need.
Don’t passively wait for some magical medical minister to make you mend.
They can help, but only YOU can do the healing.
It’s YOUR body, YOUR pain, YOUR healing.

Take CHARGE!

Tuesday, 2015/11/3 – Last Radiation

I got my last dose of radiation on 11/3, after having a swallowing evaluation in the morning. I think the evaluation would have been better done BEFORE the chemoradiotherapy, BEFORE I had lost 30 lbs. due to malnutrition, because much of my trouble began with the original tonsillectomy, on July 29th. Still, it means I will now get physical therapy, and that I have the blessing of the speech pathologist to continue my current method of getting nutrition. That is a special technique, which allows me to drink 16 ounces of stuff that really does make me want to puke, quickly and without puking. The doctor said that the main thing to avoid is aspirating things (getting them into my wind pipe, bronchi, and possibly even lungs) and that my cough reflex is strong enough to prevent that. The usual technique is to take small nibbles, and small swallows, less than a tablespoon each, all day long, basically doing little more all day than eating. NO WAY am I going to do that. I take three very deep breaths, exhaling until it hurts, and hold the last one. Then I chug-a-lug the whole 16oz glass in about 15 seconds, not breathing at all, because smelling the stuff as it goes down is a major nauseator. I figured out that one thing causing me to gag is the disparity between the smell my hyper-sensitized nose gets, and the almost total lack of taste my crippled tongue sends to my brain. The incongruity sets my gag reflex to max, and even just a gel cap can fire it off, causing a very distressing, and often very messy, reaction.

With the very stressful Barium-drinking/eating in front of the fluoroscope over, I went in to my final radiotherapy session exultant, and enjoyed Queen’s “Another [tumor] Bites the Dust” and “We Are the Champions” as the machinery whirred, click-clacked and buzzed. I got to keep my mask as a souvenir (featured image above) and you can be assured of seeing it again: my trophy from the Zombie Wars.

Since Charlotte had driven me down there (because of the swallow study) I did not ride the van, but I saw my two fellow pilgrims in the waiting room, and we all congratulated one another on surviving to the end of our radiation. It was a good day, but we all knew it was not nearly the end of our coping with cancer and the ravages of the necessary treatments.

Since 11/3 (about 3 weeks as I write) my life has been tightly focused on recovery, mainly from the treatments the cancer required. In the last week, I have finally been able to taste something other than salt.  I can barely detect some sweetness in the weight builder shake.   I am told that the derangement of my sense of taste is either totally or mostly due to the Platinum in my tissues from the Cisplatin chemotherapy. Though the drug itself is eliminated quickly, the Platinum will be around for up to 180 days (6 months) after the last dose I received on October 7th. That means in early April I should know how much taste I will recover, and be finally free of the poison. Much sooner than that, I hope that most of my taste, and beard, and ability to eat normal food, will have returned, but I know these things are not guaranteed nor amenable to strict timing.

It has been a daily struggle to keep nourished, and to learn to cope with the changes in my mouth and throat. I sleep in one- or two-hour chunks, getting up to clear and moisten my throat, and sometimes my nose so I can breathe. My weekday afternoons are free from the pilgrimage to the Linac again, but most of my waking hours are still overshadowed by mixing and drinking the weight builder shake (Optimum Nutrition Serious Mass) that is my current diet, with fiber and vitamins and omega-3/6/9 oils added. I swallow whatever gel caps I need with water, but crush all crushable pills and mix them into the shake, and I take a tablespoon full of the oil just before drinking the shake. That needs to happen four times a day, and is terrifically time consuming, once cleanup is done. For now, though, I can live with it. My skin is healing nicely from the radiation wounds, and my throat is getting less stiff and painful when I swallow, so things are looking up!

Wednesday, 2015/11/25 – Slicing and Dicing and Pretty Colors

One great thing about Kaiser is that they keep all patient data (as far as possible, which is a lot) in their computer system, and it is accessible from all their locations. It’s not perfect, but it is decades ahead of most other healthcare providers. I requested all my diagnostic imagery from all locations, from 7/01 to 11/18, and I got it on 11/23, on two CD’s. It cost me $15.00, but for a technerd like me, it‘s totally cool! It comes with a viewer on the CD, and has GOBS of images, some of them really amazing to look at. I can’t give you the interactive experience of being able to rotate the image in one view, or to select different slices to view, seeing the structures change, but I have exported a few images as examples.  Here is a slide show of them:

 

010_CT_SCOUT_HEAD_IN_MonoDark
CORONAL SINGLE-SLICE CT SCAN, NORMAL COLOR
020_CT_ScoutHeadInRainbow
CORONAL SINGLE-SLICE CT SCAN, ENHANCED COLOR
CORONAL CT AND PET FUSED
The usual X-ray film image from a CT scan, monochrome, of a slice smack down my middle (coronal plane) The CT scan image enhanced by using color to increase contrast between densities. PET scan FUSED with CT scan: less resolution, but the cancer stands out because of its preference for glucose.   Our brains also use glucose exclusively, so mine shows up as bright as the cancer in my neck.

The reason the PET scan shows the tumor so clearly (though the actual resolution is less than the CT) is that PET actually shows FUNCTION rather than just physical structure.  I was given an infusion of glucose with radioactive Fluorine attached to it. This shows up in the tissues that are the most greedy to use it, like the brain, active muscles, and the cancer. If you missed my other description and details about the PET scan, HERE IS A LINK.

It’s fascinating to manipulate the color scheme, and to scroll up and down through the slices the computer can display.

The imagery is stored in DICOM format, which is specifically adapted to medical use, and a special reader is required to view it, but free readers are available online. SLICER is a feature-rich open-source, multi-platform reader, and MicroDicom is a simple reader for Windows

Monday, 2015/12/7 -The Long, Slow Distance

A month after my last radiation, and almost two months after my last chemo, I am eating some solid food, though it is difficult. Things still have very little flavor, and what tastes do get through, are distorted. Still, I am able to eat solids with minimal gagging, and though I have very little in the way of saliva, I can wash the food down with water or decaf coffee. Now that I have not had any caffeine for a couple of months, I don’t miss it, and may not ever go back to drinking it on any regular basis. The sticky, foaming spit and dry throat are still a terrific burden on my mind, interfering with not only my eating and sleeping, but my ability to speak well or sing. The weakness in my throat and lack of resonance which set in about half way through the chemoradiation are still with me, but I believe I am finally getting a meager portion of the strength and control back. I have now seen a dietician twice, and have some useful information on how to build my appetite and weight back up. I need high-calorie-density foods: those with maximum calories per weight or volume, of fats, carbohydrates, and protein.  Fats are most effective, because they are 9 calories per gram, vs. 5 calories per gram of carbs or protein. Another reason for me to avoid overloading on protein, is that protein actuates the satiety reflex more quickly and strongly than carbs or fats, therefore my lack of appetite will be worse if I start off with high protein foods. This all boils down to eating very differently from the almost vegetarian, generally Mediterranean diet I had been loving before cancer came and overturned my apple cart.

My first solid food in several months was on 11/23: a banana. Then on Thanksgiving, I feasted: a fried egg, two sausage links, and a few bites of a Belgian waffle at Denny’s, all washed down with decaf coffee. Since then, I have been trying some sort of solid food every day, and though nothing appeals to me much, I am learning to eat whether hungry or not, and to wash down things that taste both wrong and vague. The pace of my recovery is maddeningly slow, but I can look back to a month ago and see clear improvements. I am sleeping well now, only waking once or twice a night to clear my throat. My voice is sounding more normal, more of the time. My weight has stabilized, and I have a BMI of 22, which is quite normal and healthy. Now to regain a little more of the weight I lost, get stronger, re-learn how to eat, sing, and speak, and get on with life….

…and then there’s the beard.  I have worn a beard almost all my adult life.  The chemo probably slowed all my hair growth, but the radiation really did a job on my jaw.  The Linac rotated around the isocenter (an imaginary line from my head to my feet – more on that in the next chapter) and the X-rays were focused in the plane of my lower jaw, perpendicular to that line. That  meant they had to go through my teeth and my cheeks, and that included the follicles that produce my beard. My entire beard suffered, but the worst of it was in a half-inch wide swath aligned with my lips. I close this episode with a slide show of my face as it changed during and after the treatments:

To pause the show, mouse over it.
To read the description, mouse toward the bottom.
To see the photo full-size, click it.



More on the Linac in the next installment,
with information I got from the Medical Physicist
who knows more about it than anyone else on earth.

Tuesday, 2015/12/15 – Even More Nuclear Physics

OK…. I confess to being a total technerd, and fascinated by the Linac (Medical Linear Accelerator) that irradiated me five days a week for seven weeks. I was also fascinated by the imaging tech. they used to diagnose me, and to plan where to send the death rays. I made such a pest of myself asking the therapists about the science, that they arranged for a Medical Physicist to talk with me and answer some of my weird questions.

I alaready posted about the PET in September:

I published some of the actual imagery from my scans here:

I now have some clarification about PET. Here is some of the expanded information Dr. X gave me, with a few extra details his guidance led me to dig up::

The annihilation of the electron and positron generates two gamma rays, each about 0.5MV (half a Million Volts equivalent energy) that travel in opposite directions, on a line through the locus of the collision. Some of the rays hit a ring of phosphor crystals, making them glow. That light is picked up by very sensitive photocells, and analysis of which crystals get hit gives the computer a line along which the annihilation occurred. The computer records hundreds of millions of these lines, and uses the points at which they cross to tell where the radioactive marker is. Adding information on the TOF (Time Of Flight) of the rays can improve the accuracy, but is not in common use yet. So far, we just can’t measure the delays of the rays (picoseconds) traveling at the speed of light, accurately enough to make much use of the information. You can read more on TOF:

Now more on the LINAC:

The following will make better sense if you have read what I already wrote about the Medical Linear Accelerator on 9//1:

…and on 10/9:

Now Dr. X has helped me understand it even better, and here is some of that new information and clarity:

As I lay on my back on the couch, the therapists would sometimes tell each other to move me “ten millimeters more X,” or “just nudge him down a little on the Y axis.” I realized that they were referring to the directions of movement in Cartesian co-ordinates, with the abscissa (Y axis) being vertical to me (from my head to my toe) and the Ordinate (X axis) across my body, from one shoulder to the other. Of course, I had to ask if the Z axis was from my front to my back, but the therapists didn’t seem to understand, so I asked Dr. X later on. Indeed, that is how the Z axis is defined. I drew a picture to illustrate:

BodyPlanesAxes

Of course, with me lying on my back, the whole thing rotated like this:

BodyPlanesAxesSupine

The coronal plane is perpendicular to the Z axis, and the coronal slices of a scan (CT, MRI, or PET) will be parallel to that plane. Imagery is most often “viewed” from the front of the subject (coronal) from below the subject’s feet (axial) or from their Left side (Sagittal) depending on which plane one selects.

This means that as one lies in a scanner or the Linac, these are the axes:

AxesInLinac

The imaginary line down the center of my body is called the Axial Isocenter. It is the one they most oft3en refer to, so they sometimes do not specify “axial.” The Linac gantry rotates around this axis, and the beam remains centered on the Isocenter as the gantry rotates. The standard radius of most medical linacs is 100cm, from the target to the Isocenter. The target is a piece of Tungsten the electrons hit to generate the X-rays, and it’s up inside the treatment head. For tumors on the skin or only slightly below it, the target is replaced by a scattering foil (very thin aluminum or copper) and the electron beam itself is directed to the treatment area.

Clinac_isocenter_960x500Here is a sketch of the basic configuration of the Varian Clinac that delivered the radiation therapy to my tumors:VarianKlystronLinacAfter the electrons are accelerated in the waveguide, some Linacs use a magnetic slalom path to further focus the beam.  This video shows such a beam path:

Varian Linacs, like the Clinac that was used on me, instead use a single 270° Achromatic bending magnet (dipole) to bend and focus the beam, as seen in these illustrations:

VarianClinacBeamPath

AchromaticDipole

In the 270° turn through the dipole, the beam is narrowed to a millimeter (1/26 inch, or 0.0393701 inch) in diameter.

The electron beam velocity (near light speed) determines the energy level of the rays produced. I got 6MV (MegaVolt) X-rays (photons), because my tumor was not deep inside my body, but not at the surface either. The Clinac can also produce a 15MV photon beam for tumors deeper inside the body. The system can also do digital X-ray imaging, at either 6MV, or 12KVP (KiloVolt Peak)

To make sure the right amount of radiation is delivered, the computer uses two ion chambers in the beam path between the dipole and the final collimator. The first one tells the computer when the dose has been administered, and the second one can sense if the first one has failed, and cause an emergency shut down.

Prior to each patient getting their first dose of radiation, the mapcheck array is used to align the system and adjust the dosage to match their specific treatment plan. The mapcheck array has 475 diodes as sensors, sending dosage information to the computer in real time.

If you’ve read this far, then you are a true TechnoGeek like me. Congratulations, for the geek shall inherit the earth.

Monday, 2015/12/21 – poking and prodding, gagging and television

Today I went down to 4950 Sunset for my first checkup after the radiation was done. Charlotte came along for moral support, and I was very glad to have her with me. They poked and prodded, made me gag, and shoved that damned laryngoscope down my nose again. Next time, I am going to remind them to record it, so I can see what they see. The verdict was that there was no detectable sign of cancer. In 3 months, I’ll go back for another similar exam, and then at 6 months out I’ll have another, and also a PET scan. In the meantime, I forgot to get a blood test.

They didn’t order one, but I have questions that only a blood test is likely to answer. For one thing, I am not sure that my efforts at good nutrition are really working.   I’m getting 2800~3100 calories every day, but my weight hovers between 150~155, and I’d like to get back to 170~180. Also, the Leukopenia caused by the chemo means I have to be extremely careful about cuts and infections, and cannot get my flu shot. I really want to be able to relax a little, so if my lymphocyte counts are back up to healthy levels, it will ease my mind and my lifestyle.

Still, it was worth the drive, and the indignity and discomfort and pain of the examinations, to hear that they could not see any signs of cancer. It was also good to hear that for another 4~6 months, I can hope to regain more sense of taste, and possibly even function of my parotid (salivary) glands.

Now to continue healing and looking forward to my next follow-up on March 21st…..

2015/12/23 – Blood test: mixed reviews

▲▲▲▲▲▲
featured image: a Macrophage (red) engulfing tuberculosis bacteria (yellow), taken with ZEISS FE-SEM (Scanning Electron Microscope. ) Courtesy of Dr. Volker Brinkmann, Max Planck Institute for Infection Biology – Berlin, Germany. http://www.zeiss.com/sem

I had my blood tested, and nutritionally I’m doing fairly well, but my immune system is still very weak.

Agranulocytes20150820~20151223annotated

My most important immune cells were decimated by the chemotherapy, and are still not back to strength. In the graphic above, the levels on 8/20 (before any treatment) were fairly normal, but by the morning before my second chemotherapy infusion, they were alarmingly low – especially the hunter-killer lymphocytes which target enemies and generate antibodies to kill them, and also to point them out to the monocytes, which kill and eat the bad guys. When stimulated by antigens from alarmed lymphocytes, monocytes grow to become large and highly mobile macrophages which engulf and destroy invading organisms and irritants.

The chemotherapy on 10/7 even further diminished my immune system, and by 10/14, the day of the feeding-tube scare, it was at a dangerously low point. A very slight improvement can be seen on 10/21, and a smidgen more by 12/23, but I have a long way to go.

Nutritionally, things are a bit better:

Electolytes20150710~20151223annotated
…so I am continuing to use the weight builder shake, and trying to eat a little more solid food every day.

Hopefully by March 21st, these statistics will have changed significantly.

2016/01/01 ~ 2016/4/4 – Zombies’ Revenge

▲ featured image▲
The little Vitamin E gelcap that suffered through the MRIs with me.

I haven’t updated the blog in over 3 months, because some things have been so unclear and worrisome I didn’t have the energy and presence of mind to do it.

2016-01-01 (& 11, &14)

Shortly after my first post-treatment follow-up on 12/21, I noticed a new stiffness in my neck near my right jaw joint (TMJ) and found a tiny lump developing right at the joint.  I monitored it for a week or so, and once sure it was growing, and it also began to hurt, I made an appointment to see my PCP (Primary Care Physician) about it.  Instead, I got a Nurse Practitioner on 1/11, who could not feel it, but he referred me to my actual PCP.  On 1/14, my PCP also could not feel the growth, while I and other lay persons felt it clearly. In an abundance of caution, however, he ordered a chest X-ray, and referred me to Head and Neck surgery.

2016-01-15

On Friday, Dr. S was quick to both see and feel the lump, and take an FNA (Fine Needle Aspiration) biopsy.  He also sent me for a PET scan, combined with a CT scan.

2016-03-01

Dr. S and I reviewed the PET on Tuesday.  It showed a lot of activity in my right Parotid gland, consistent with healing from the radiation, or necrosis…. or possibly cancer. The FNA came back negative for malignancy, so we reasoned that the gland, or a lymph node within the gland, was likely dying an ungraceful death, and causing the inflammation and swelling.  Since I already had appointments set for 3/21 with Radiation Oncology on Sunset, and Dr. S the next day, we decided I could use a pain reliever to help me sleep, and watch the growth until the appointments.

2016-03-12

That was the plan, but on Saturday, 3/12, I noticed that my right eyebrow did not lift when I told it to.  That eyelid was drooping a little too.  I got the first appointment I could with Dr. S (Tuesday, 3/16) and he confirmed my theory that the growth must be pressing on one of my facial nerves, inflaming it and causing it to fail.  He prescribed Prednisone, which did not stop the parotid swelling, but reduced it a little, and also lessened the pain. He also ordered a blood test and MRIs.

The GE 3T coffin...err... MRI machine.
The GE 3T sarcophagus…err… MRI machine.

2016-03-25

I had an adventure with the MRI Friday evening.  I’d had an MRI on my knee about 20 years before, and it was a little cramped, but not bad.  Noisy, but not anxiety-inducing.  Hey – I had endured a PET scan and a bunch of CTs, and been nuked 35 times by the Linac.   No damned MRI was going to freak me out.  On entering the exam room, I was told that there would be 3 studies (MRIs) taken, of 3 different regions, and each one twice, once without contrast, and once with it.  The ones without contrast would each be about 30 minutes long, and the ones with contrast would be about 15 minutes each.  This entire business was to occur with me as immobile as possible, throughout. The tech. taped a gelcap of vitamin E to my cheek, over the area of most interest, as a marker.  I swallowed my rising anxiety and lay down, and the technician clamped my head in place, and stuffed foam in around my head to further immobilize it… and then the hard table carried me into the narrow tube, head-first, to my knees. My elbows scraped the sides of the tube, and my hands were just barely able to feel the rounded aperture of the huge device. Breathe.  Inhabit that breathing, releasing the panic and letting the horror and helplessness flow out and leave me calm, relaxing for a nice nap.  Think about anything except being trapped inside the belly of this beast, which was making hammering and buzzing noises, and quaking to the shock of parts hitting one another…. NO WAY!!! I frantically signaled and shouted through teeth clamped shut, and generally made a blubbering fool of myself. He brought me out from the cave quickly, and let me sit a while and pant and then sigh, and eventually face the fact that I MUST do this.  For the PET scan, I had been prescribed Lorazepam, which did help me through, but for the MRI’s, I was sure I would not need anything. WRONG.  The tech. told me that he had never done three studies all in one session, and that three studies both with and without contrast amounted to a double-triple study, which he was sure was very rare.  That didn’t really make me feel much better.  I thought about re-scheduling the studies, and realized that time was of the essence in diagnosing whatever was happening in my head and neck… so I determined to proceed.  I made it through the three hours of maddening claustrophobia and noise, counting seconds, thinking about anything and everything I could, that might take my mind off the weight of that enormous machine, surrounding me and creating life-saving images of my body.   I found that there were a couple of little flat metal pieces in the immobilizer clamping my head down, and they were polished like mirrors.  I could see my own eyes in them, and it provided one more thing to distract me… for a few seconds out of the hours of horror.   I became the first patient that tech. had ever even heard of enduring a “double-triple MRI” and left badly shaken, but in possession of three precious DVDs, which I immediately took to the Head & Neck clinic, which, of course, was closed.

I looked at the images on my computer at home, and was not very impressed with the resolution.  They were not any sharper than the CT scans with which I was already familiar… or maybe I just wasn’t using the viewing software correctly…

2016-03-28

I had a 3PM appointment in Los Angeles, with a specialist among specialists, in surgical Oncology of the Head and Neck – Dr. Mc.  On my way out of town, I took the MRI CD to Dr. S, and he called me in to an exam room.  He told me that the last Fine Needle Aspiration biopsy had been found positive for cancer.  I was shaken, but not altogether surprised.  That had been among the possibilities all along.  With that news, I headed down to see the specialist.  Dr. S is a specialist in the head and neck, but this doctor in Los Angeles had two extra years of medical school, studying nothing but surgical removal of cancer from the head and neck.  He had worked for decades in that relatively small territory, and knew it far better than the back of his hand.

Dr. Mc examined me thoroughly and skillfully, and gave me more clarity than anyone else. The news was very difficult.  I had fully expected that I would need my right parotid gland removed, and that appears definite, IF the various scans indicate that the tumor(s) is/are operable.  If the cancer has infiltrated my carotid artery, then it appears that no procedure or course of treatment would be of any use. Very few patients in similar condition last more than about 2 years.

The extent of my facial paralysis is consistent with the cancer having killed some of my facial nerve(s) rather than just inflammation and pinching. If so, then cutting the nerves out completely, and some surgery to aid eye function, are the best for which we can hope.  Ref. the parotid itself, it’s got to go (wasn’t working anyway, because of the radiation) and some nearby tissue they call margin will have to be removed as well.  Radiation and poison didn’t finish the job, so surgery is the only thing left.

Dr. Mc did have trouble reading the MRIs clearly, so we reverted to the most recent PET scans. He said he would consult with a radiologist who would help him read them, and also consult with several others in his department, and have more definitive information after that.  I drove back through the stop-and-go interstate arteries in a daze.

2016-04-01

I got a call from the Head and Neck Surgical Oncology Department down in LA.  I have to do one of the MRIs over, and it has to be done in the Kaiser facility, in LA.  I moved too much during the original set, blurring the images.  The blood drains from my head when I think of it, but I am confident that I can handle 45 minutes of imaging far better than the 3 hours I endured on the 25th.  I’ll see if Dr. S will prescribe some Lorazepam, but hopefully I won’t need it.  Taking sedatives before a procedure which does not include general anesthesia is a tricky game.  I don’t know about anyone else for sure, but the very fact that I know I am loopy can cause anxiety too.  I worry that I’ll do something stupid and dangerous, or at least mess up the scan.  I’m going to gauge my state of mind as my friend H drives me down there, and decide whether or not to take the pill. I would much prefer to just handle the nerves and not use any chemicals. Lorazepam has a 15~30 minute onset, so I could theoretically wait until I am in the waiting room before taking it… but better still will be if I feel confident without it.  I have a CT scan up here in Lancaster Monday evening, and by then I should have my appointment set for the MRIs.

I thought I was out of the woods… but there are more woods after those woods…

Friday, 2016/04/01 ~ Thursday, 2016/04/14 – Hurry Up and Wait

20160401~20160414

I didn’t think I would need to include the year in my dates for these entries, but it is looking like I do.  I hoped to be completely done with cancer before July, so there would be no confusion about dates…. But now that appears very unlikely.

Things are starting to overlap.  The surgical oncologist down at Sunset had me schedule a repeat of one of the three MRIs, and said it had to be done down there, and then went on vacation.  The earliest I could arrange one was Saturday, the 16th, so I put that on my calendar and arranged a ride. I also had a CT scan scheduled for 4/4, to see if there were any mets below my collarbone.  That is a sort of arbitrary index of curability from head and neck cancer.  If it doesn’t metastasize past the collar bone, it’s curable. My right eye doesn’t open wide, nor close tightly, so it tends to have either too much or too little precorneal film (tears) and frequent blurred vision.  I feel like every day something else is failing, falling off, falling apart.

2016-04-01

On Friday, 04/01 – April Fools’ 🙂 Day – my voice got hoarse.  I hoped it was congestion… phlegm interfering with the function, so I bought some cough medicine and tried to rest my voice.  By Saturday, the second, I found myself unable to speak above a stage whisper.

2016-04-04

About 4:30 Monday afternoon, the (the 4th) I got a call from Sunset. The Surgical Oncologist had returned from vacation, and raised the roof about my not having re-done the MRI yet.  He said it was stat, meaning required within 24 hours. His office said I needed to schedule it, and that the 16th was not nearly soon enough. Red tape swirled around me for a couple of hours, and I went to get the CT scan with the MRI appointment still not made.  I waited an extra hour to get the CD so I could hand carry it to my Kaiser doctors.

2016-04-05

Next morning (Tuesday, the 5th) I was able to arrange an MRI for that evening up here in Lancaster. I saw a new speech therapist that day, and she said we should get Dr. S to scope my larynx the next Tuesday when I returned for my next appointment with her. I was learning to not strain when speaking, and to hate the telephone.

Sleeping has been sketchy since July 29th, 2015, when I had my tonsils out, but lately with the mass in my right jaw, and my right eye not closing or blinking well (causing sleepy dust to fog my vision) it is a matter of staving off the pain for a couple of hours and then getting up to clear my throat, drink some water, and vibrate some of the tension and pain and stiffness out of my jaw, so I can sleep for another couple of hours.  After about 8 or 9 hours of that, I get up and do something else.  Now, please don’t misunderstand.  The psychiatrist and psychotherapists say I have major depression, but I know people who really do.  Compared to theirs, my life is a cake walk. Compared to many people I know, my medical and other issues are trivial. This shit will end for me before very long, one way or another, and I can handle whatever happens on the way. Ever since my 60th birthday, humility has been forcing itself on me in various ways, and I am hobbled now. I have never felt less competent, nor less admirable, than I do now.  I have kicked some major ass in my life, but now it appears to be my turn to take some body blows. No Big Deal.  New lessons, and maybe even chances to practice what I learn.

2016-04-12

On Tuesday the 12th, the laryngoscope made it clear that my right vocal fold was indeed paralyzed, and no cough medicine will restore it to function.  Most likely cause is radiation, but there is always the possibility that the cancer has gotten into those nerves and is making zombies of them.  It is not likely that mere pressure from the parotid tumor could be causing it.  That evening, I battled the Claustrophobiator.  The MRI was interesting.  I put all ferrous metal objects and electronics on a table far away from the machine, which uses super-strong magnetic fields to see inside us.  I’ll get technical about the MRI soon, but not now.  Lying down, being clamped in, holding the panic bulb (electronic push buttons would explode in the MRI) then sucked into the tunnel…. the old panic rose and I was unable to release it.   I squeezed and they got me out, and I breathed a while, and went back in.  This time, as the machine began its truly bizarre clicking and banging, I felt something wiggle at my waist.  I had forgotten to take off my belt, which had a ferrous buckle!  In a panic, I squeezed the bulb, and then (not really thinking, just trying to signal the technicians better) I pulled my belt off, and held it outside the tunnel for them to see. The buckle strained toward the main field coil, waving like the head of an angry snake.  I managed to hold onto the leather, and keep it from doing any damage, and the tech came in and took it to the table for me, and then the study proceeded for 50 minutes and was successful.  After the hyperventilation and dizziness faded, I again waited the extra hour for the CD, taking it home and copying it to my hard drive and to another CD, so I’d have one for each of my surgeons.

2016-04-13

Next morning (Wednesday, the 13th) I gave one copy to Dr. S, and had CD’s of both the MRI and the CT from the previous week ready for Dr. Mc down below.  I guess 4PM is the favored time of day for Sunset Surgical Oncology to make panic calls… because that’s when they told me that Dr. Mc needed to see the MRI STAT… even though he was going home at 5, and would be out of the office in surgery all the next day.  I rushed to the Post Office and sent it to him overnight.  $23.00… but it’s cheaper and safer than driving down and back.
At bed time, I noticed that my upper lip and nose on the LEFT side felt odd… numb, and not working right, like Novocain at the dentist.  I have all but ceased to be surprised at anything.  I emailed this information to both surgeons and my primary care doctor.

20160414_JauntyMug

2016-04-14

Thursday, the 14th, my primary care doctor called me in for a fairly basic neural survey, merely confirming that I need to see a head and neck surgeon about my face, which will happen again on Tuesday the 19th.  It has now gotten to where I have trouble keeping my lips shut to chew, and much like the other nearby issues, those nerves are most likely either dying from the radiation, or directly from cancer. It’s a daily struggle now, not only to get the calories I need, but even to stay hydrated.  I feel full all the time, and drinking is distasteful.  Real human faces are never absolutely symmetrical, but mine has gained a little more than a jaunty tilt. I’m not so concerned about where I am, as where I’m headed, and I am facing up the hill, toward the light.

 

Friday, 2016/04/15 – Better Batter

Time for an update on the weight builder shake I use to keep my calorie count up, hoping to gain – or at least not lose – weight. After some exhaustive online research, I have concluded that the best product for my purposes is Serious Mass, from Optimum Nutrition.  I have no connection with the company, save liking their products, but theirs is the ONLY line of protein powders I found which don’t contain appreciable amounts of heavy metals.  Most others have one or several heavy metals barely below the FDA limits, so I find this to be significant. In addition, the balance and quality of their ingredients is better than most, and they come highly recommended even by GNC, who sell their own competing product. If buying it at GNC, be sure to mention their price matching program, because it will save you a LOT of money. In addition to other food, I drink half a serving (16 oz.) of the shake with an oz. of wheat dextrin, and an ounce of coconut oil, twice a day.  That gives me 2300 calories, which is my maintenance level.  With a little other food, that assures me of having enough calories that if my body is willing, it can bulk up. The NIH has a handy calculator at http://fnic.nal.usda.gov/fnic/interactiveDRI/ so you can find out how many calories you need.

  I have streamlined my method for mixing the weight builder shake. I learned how to avoid entraining air into the mix, so it does not need foam removed, and I learned that crushing the pills was a bad idea both labor-wise and nutritionally. Now I use just three pieces of kitchenware, vs the dozen or so I used to use. This slide show gives my new procedure:

If you want to learn about my early struggle with weight loss, and see what I did for the first several months of using the weight builder shake,

.

Sunday, 2016/04/24 – Plan B…or is it plan D?

Sunday, 2016/04/24 – Plan B…or is it plan D?

Tuesday, 2016/04/19

After the mad shuffle of getting the MRIs to Drs. S and Mc, and having my PCP refer me to Dr. S again (this time for paralysis in my lips and numbness in my nose) I waited until Tuesday, 04/19 to have Dr. S confirm that the damage to my facial nerves is spreading.  That evening, I sent Dr. Mc at Sunset an email:

—– Message —–
From: SLATER-LUNSFORD,WAYNE
Sent: 4/19/2016 5:13 PM PDT
To: Dr. MC
Subject: MRI & progression of symptoms and signs

By now, I am sure Dr. S has contacted you about our visit today. I am alarmed at the rate of change this busy little tumor is sustaining. Has the new MRI given any more insight into how and when we should evict this troublemaker from my neck?

CorGad18of40ann

Wednesday, 2016/04/20

Then late Wednesday afternoon, Dr. Mc called me.   He told me that after careful examination of the new MRI, and consultation with radiologists and fellow Surgical Oncologists, he considered the tumor to be inoperable.

At first, the pyramid-shaped Parotid gland (apex pointing inward) had swollen out through a space under my jaw, causing the distension and pain I was feeling.  It had then slowed a little, but turned inward, toward the stuff that keeps me alive nearer the center of my neck. The tip of the pyramid was messing with the nerves and blood vessels there, and cutting it out would be impractical, since tough he had seen the operation done on others, it had NEVER, to his knowledge, been successful, and ALWYS caused tremendous pain and debilitation without benefit.  He said that conventional surgery simply had no reasonable chance of helping, but that chemotherapy had lengthened life for some patients.  I asked about repeat photon therapy or proton therapy, and he said that though he was not expert with either, they both seemed to him to offer some hope, especially protons.

I contacted Dr. I, the chief Radiation Oncologist:

—– Message —–
From: SLATER-LUNSFORD,WAYNE
Sent: 4/20/2016  5:24 PM PDT
To: Dr. I
Subject: intervention in new tumor vector

I just spoke with Dr. Mc, who had grim news about the results of my most recent MRI. The tumor appears to be moving rapidly inward, toward some of the most critical structures, like the carotid and cranial fossa. He is referring me both to you, and to the Medical Oncologists, because the prognosis for conventional surgery is almost totally negative. I know that now that the photon radiation has already failed, chemo tends to be the choice, but that path has little hope of any significant improvement, and would further compromise my immune system, which is only beginning to recover from the Cisplatin I had on 9/16 and 10/07.  I hope that you can see some possibilities in either more photon, or Proton therapy.  The Bragg peak seems to me to offer significant benefits over even the most precise IMRT, SmartArc included.  I understand that proton therapy is horrendously expensive, and that machine time must be rationed between many patients whose conditions may in many cases put them ahead of me in any triage scheme.  I know that you will give this case your full attention and your best efforts, and I thank you in advance for your dedicated service.  My cell phone is (###) ###-####, email is xxx@yyy.com and I am ready to do anything you may consider to have even a remote chance of improving my situation.

Friday afternoon, I got a call to meet with the tumor board at 8:30 Monday morning, 2016/04/25.  I will listen to whatever they recommend, but they are not likely to persuade me to undergo chemo again, unless it accompanies proton therapy.  If I find opportunity, I will write on proton therapy, but for now, I will say that the Bragg Peak to which I referred in the email is the part of a particle beam where the particle stops, and releases most of its energy.  Thus, unlike a photon beam, which expends most of its energy killing the skin and other tissues on the way to the target, and then more tissues on the way out past the target, particle beams can be adjusted to deliver most of their deadly payload at the exact depth of the target.  By carefully adjusting the speed of the particles, a proton accelerator can cause them to destroy specific tissues much more precisely, sparing nearby structures and allowing much higher doses to the actual target.

I am looking for a miracle, by my definition: something happening that we did not expect, and cannot fully comprehend. I have faith that miracles happen, and that one can happen to me:  http://waynesl.me/rose-colored-reason/

Monday, 2016/04/25 ~ 2016/05/04– Second Tumor Board & Third PET

Monday, 2016/04/25 – Second Tumor Board & Third PET

I was amazed at how quickly after I received Dr. Mc’s news I was scheduled for my second tumor board.  There is seldom any reason to ask for a second opinion after a tumor board, because it represents the findings of half a dozen extremely competent doctors in various allied specialties, plus the consultation of more experts, such as radiologists and medical physicists. I went to be examined one more time, including the laryngoscope, to discuss my signs and symptoms with various doctors, and hear their diagnosis and recommendations. Charlotte took me down there, and stayed with me throughout, and posed some questions I did not think to ask.  After the investigative phase came the deliberations for about an hour, and then they called me into a pleasant office with a computer and comfortable furniture. On the way, we stopped by the exam room where they had scoped me earlier, and showed me the video of the exam.  It showed a bulge at the back of my throat (in the nasopharynx region) which indicated some sort of growth or swelling there.

It was just Dr. I and Dr. K this time, and Charlotte and I had a good long session with them.

The news was very upsetting.  The specific type and strain of cancer I have is particularly susceptible to photonic radiotherapy, not generally very fast growing, and usually cured by the regimen I underwent last fall.  For it to resurface, and to be faster-growing than before, was a rare occurrence.  The MRI showed the experts a different picture than was expected.  It, along with the PET and CT scans, showed a tumor which had grown quickly outward at first, then slowed a bit and turned inward, but was now heading for some very critical structures.  The parotid gland is a pyramid-shaped thing, with the base against the inside of the jaw, and the apex pointing inward, toward the throat.  At first, the base grew, and interfered with jaw function, and caused pain and swelling in that region.    Then the thing surprised us.  It turned inward, growing at the apex, toward my carotid artery, esophagus, and vagus nerve.  It had compromised the vagus nerve, which paralyzed my right vocal fold.  This was bad news, but there was more.  On the PET scans, there was a faint shift in color in a couple of spots separate from the parotid, closer to my pharynx, which indicated increased uptake of the radioactive fluoride sugar they used as contrast, as a marker.  I have not obtained the new PET scan, but in this MRI image, we are looking up from my body, toward the top of my head, and the squiggle next to the tumor is part of my right earlobe.  Gadolinium was used for contrast.

annotated MRI of problem areas in recurrence
Parotid’s Progress

PET depends on the radioactive decay of Fluorine-18, attached to glucose, to show where sugar is being used most.  The brain uses a LOT of sugar, because it cannot burn fats or other carbs. Active muscles do as well, and there are dozens of other things that can present false positives, but cancer is one thing that uses only sugar, and tends to draw the glucose to itself, showing up as hot spots on a PET scan.

In light of the swelling at the back of my pharynx, these tiny, vague spots took on a sinister aspect. For more on the PET scan, read this earlier post:
Bottom line: my particular type of cancer should have succumbed to the combination of poison and death rays, but two things may have happened to let it live.  In trying to spare my parotid gland, the radiation may have missed a cancerous lymph node inside the gland, which did not show up on previous scans.  That is the most cogent explanation for the swelling parotid.  Another problem, not as sure, but logically surmised, is that some of the cancerous tissue in the high-dose area may have survived the radiation, and it may have included a cancerous stem cell.  It is the stem cell which, once cancerous, creates the clones that spread.  Not having the third dose of chemo may have facilitated that, but we cannot be sure.  If there is still tumor growth in that area, then it is more dangerous than the parotid tumor.

I found a very good slide show that summarizes a tremendous amount of information on cancer, what it is and how it works, at:

What to do:  another PET, chemo, immunotherapy, and clinical trials of new drugs.  I had the PET scan (with concurrent CT to improve the accuracy) Thursday evening, 2016/04/28, to evaluate the extent and nature of new growth. I will be seeing a medonc (medical oncologist) and we will discuss three possible strategies to deal with this persistent pest.   One thing is to do more chemotherapy, and if it shows any effect, add radiation to finish up the job… BUT the margin needed to assure eradication of the tumors would cut into my carotid unless the tumor(s) shrink from the chemo first.  Another hopeful avenue is immunotherapy.  Instead of killing the immune system as conventional chemo does, it boosts the natural defenses of my body so they can selectively kill the cancer. Strides are being made in immunotherapy, though success may cost Big Pharma billions of lost income from conventional chemo drugs.  It has only been successful with a few types of cancer, and the science is still developing, but it is almost surely the best way to cure cancer, when it is effective.  There are also other drugs and procedures undergoing testing, that hold a lot of promise, and if I get accepted to a clinical trial of one or more of those, it offers some chance of a cure, or at least an improvement.

Thursday, 2016/04/28 – 3rd PET scan

I wish I didn’t know so much about this stuff.  The company that contracts with Kaiser to do their PET scans in Panorama City bought a brand new motorhome and scanner, this time a Siemens instead of GE.  It’s faster than the old one, and produces better images too.  I held pretty still, and didn’t freak out… much.  Had to work to keep my breathing under control, and to stay as still as possible, but the techs said we got a really good scan.  Now I can look forward to some information on Monday, but nothing much until then.  Just holding on from one day to the next now.

Wednesday, 2016/05/04

Two doctors (Dr. K, a radonc, and Dr. S, my head/neck surgeon) called me about the PET scan. Bad news both times. The cancer has returned and is more aggressive than before. The mets are not restricted to the parotid. Some are right in the original area where my right tonsil was removed, and the radiation was the strongest. This confirms that surgery and radiation would be pretty useless at present, and chemo and/or immunotherapy are the best hope of turning this thing around. I’ll see the medonc Monday, 2016/05/09.  Meanwhile, I am fine-tuning my nutrition with probiotics and anti-oxidants and other things which aid my immune system.

 

Wednesday, 2016/05/11 – Guest Editorial by S. C. Carcinoma

… from S. C. Carcinoma
when asked for some explanation
about the attacks on Wayne’s body.

The purpose of life? Why, to LIVE! What more purpose is needed?  What is the purpose of a star or a mountain? Humans think of cancer and it means death to them.  To me it means LIFE!  I began as an obedient stem cell, ready to become whatever my body needed, and to then to die at my appointed time. The body would go on living and thinking and generating new cells that would in turn die… but I was different.  I was FREE.  Humans would say that I “forgot” to die at the appointed time, that I was defective.  That is because they see themselves as more important than little creatures like me. However, I have proven that I am their equal – no – superior! This human I came from has put up a good fight, but I am going to outlive him.  He had a lot of help from some very clever fellow humans, with complex and powerful weapons, but I have beat them all.  He’s hanging on, and trying all sorts of ways to attack me, but my children and I will never die.  We “forgot how.”

My human calls himself Wayne. I awakened in his right tonsil.  He’d had infections there from childhood, and a little disturbance there was no cause for him to get alarmed… or so it seemed.  I took my time creating my children: clones of myself, who also would not die.  For years, we grew inside that tonsil, biding our time, very slowly taking over the entire organ, but not growing large enough to alarm the host.  Then his immune system began to falter.

At the age of 60, Wayne’s immune system was still amazingly strong, and any of my children who left the tonsil (humans call my exploring children ‘mets” for metastases) were quickly destroyed by white blood cells with their antibodies. That was happening all over his body, every day and night.  His tyrannical body system insisted that when a cell’s DNA got changed, it must die.  My kids and I choose otherwise.  Wayne’s eating habits were not as bad as most, but not stellar either.  His stress levels though – off the charts!  He hardly ever got a full night’s sleep, bumbled around groggy all day, and worked a job which had just enough perks to keep him doing it, though he really hated it overall. It was weighing on his mind that his father had died at 59, with little to show for his life… and Wayne was not sure what he could claim either.  He didn’t see the plain truth, that life needs NO excuse.  He had as much a right to live as anything or anyone else, and did not need to justify his existence, and that is how I am superior to him, as are all my children. We just love living, and will do so in any way, and at any cost.  Wayne’s stress crippled his immune system first. Once that began, the rest of his body didn’t get the maintenance it needed, and things began gumming up, and my little explorers began finding new homes where they could grow.

Until his immune system began breaking down, the cells that patrolled his blood and lymph were constantly sniffing out rebels like me, herding us off to the lymph nodes, destroying us by any of several means, and carting off the remains. Once his army began dying off, it was time to colonize! My children captured lymph nodes in his neck, near the home tonsil. They used these new outposts to gradually take over not only the nodes, but the connective tissue of the paths between them.

Wayne had no clue.  He knew his cuts didn’t scab over and heal as quickly as they had, and that his alertness and focus were falling apart, but he didn’t realize that he was being invaded and converted into ME!  He had already changed his diet for the better, and he eventually began to really eat the kind of things that would strengthen his immune system.  That could have been the end of us, had he done it sooner.  Luckily for us, he still didn’t change his sleeping habits, or lose the other stresses that were eating away at his defenses. By the time he made real changes in his diet, and realized how totally stressed-out he was, we were well established in his neck, surrounding his carotid artery, his jugular vein, and some of his most important nerves. That was safe haven from every weapon the doctors tend to use.  Immunotherapy might have helped, surgery before my children had colonized the lymph nodes… A lot of things could have destroyed us, but time and fortune were on our side. We have no conscience to hold our life lust back.  Wayne has cancer.  I have Wayne.

By the time Wayne noticed a lump behind his jaw, the lymph nodes there were ours!  By the time the doctors knew it was cancer, we had surrounded and infiltrated some of his most important paths for blood, and sensation, and control.  As they scanned and poked and strategized, I MOVED!  They didn’t realize how important diet and stress reduction were in strengthening Wayne’s own defenses, which could have selectively gone in and rooted us out. Instead they chose surgery, death rays and poison.  Fearsome weapons, to be sure, but not as accurate as the immune system which had held us at bay for 64 years.  They cut out his tonsils, and some extra flesh around them, but I was already out in those lymph nodes.  In order to poison me, they had to poison him, but not enough to kill him, so there was a limit to what they could do to me. AND! AND! The poison they chose, which makes me more susceptible to their death rays, kills his immune system!  My old enemy, Wayne’s formerly powerful and active immune system, was laid waste, and I was free to colonize more and more!  A sweet bonus was that the Platinum got into his ears, and made them ring night and day.  That, plus the wounds on his skin from the radiation,  were constantly hounding him.  Sleep patterns which might have strengthened him were difficult to establish, so the poor slob was sleeping in snatches instead of nice big chunks, and I kept growing, round the clock.

The X-rays they shot through Wayne’s neck and jaw made a mess of his teeth, his throat, his skin… and while they killed a lot of my colonists, they didn’t get us all.  Hoping to spare his parotid gland (the biggest salivary gland) they missed one of MY lymph nodes inside it.  Eventually, the radiation did disable his parotid glands, and Wayne’s mouth became so dry that no amount of water could slake his thirst.  What little spit he did have became a thick salty froth. Sticky spit, they call it. It drove Wayne nuts, and still does.  I had him on the run. Even all the radiation they shot through his neck left some of me in the area of the tonsil where I had started, too.  Those hardy little colonists withstood the X-rays, and once the radiation ended, they began rebuilding.

Every step of the way, I outlasted, out-maneuvered, and out-smarted them.  Wayne had been overweight on his 60th birthday, but a new Titanium knee and some better eating habits had begun helping with that.  As his diet changed even more, and he became more active, he began to lose weight.  He loved it, and so did his doctors.  Then with the surgery, eating became a real chore.  He went to a mostly liquid diet.  That would not have been a problem, but the doctors had blinders on.  They nodded toward nutrition, and mentioned stress, but didn’t really teach Wayne what he needed to root me out.  If he had eaten better and let go of things stressing him, his immune system would never have allowed me to grow.  I couldn’t have survived even inside his tonsil, with that thing after me.  Instead, though, his immune system had to deal with so much other crap that it missed me. That allowed me to return even after chemo and radiation, and to keep on growing.

The chemoradiation did such damage to his immune system and eating and stress levels, he was easy prey.  The remnants of my colonies in his parotid gland and back in our home beneath his tongue grew at a steadily accelerating rate, and by the time of his first post-radiation checkup, we were not clearly visible on a PET scan, but ready to bloom.  Wayne soon noticed a tiny bump behind his right jaw, beneath his ear. I played peek-a-boo with his doctors.  First the Nurse Practitioner was unsure, but referred Wayne to his actual Primary Care doctor, who couldn’t find any problem, and referred him to the specialist. The Head and Neck surgeon could feel me there, so he poked me with a needle and sent the sample off.  The first one missed me, and the PET scan he ordered was blurry and weak, so my homeland colonies slipped by. The humans hoped it was just a normal infection in my parotid gland.  All these steps took time; the time I needed to weave myself around the blood supply to Wayne’s brain, which also included sensors that guide the heart and the rest of his system in breathing and blood flow, and most fun of all, the nerves that operate his face and his throat.  The trouble he already had with chewing, and swallowing, and breathing while doing it, became a labor, and occupied his mind while I went in for the kill. He was just getting his sense of taste back from the chemo he had already had, when my colonies in his right parotid gland took over and swelled, until he had trouble opening his mouth even enough to bite a hamburger.

Eventually, when the surgeon repeated the needle biopsy, they learned that I was there. Once it was obvious to all the humans that I was back, it was a race to consolidate territory, and I had another clever move. I slowed my swelling of the lump on the side of his neck, and turned INWARD, toward all that sensitive stuff in the middle of his neck.  They were still hoping to just remove the Parotid and eliminate me, but then I announced that I was not going to go easily.   I attacked his facial nerves, paralyzing some of the right side of his face.  He found that he could not raise his right eyebrow, nor move the right side of his mouth normally, and it was hilarious watching him grimace and poke at his own face in the mirror. Better than the eyebrow thing, he now cannot close his right eye tightly, or blink on that side.  He is incessantly bothered with sleepy dust in that eye, and there is not much of anything to do about it. I’m gradually taking over, cutting one thing at a time, and growing stronger.

Of course, the paralysis tipped my hand to the doctors, but it was too late.  By the time Wayne saw a specialist who recognized the rate at which I was growing, and also saw the faint hints of me in the homeland, I had really shifted into high gear. On April Fools’ Day, I took his voice!  The smooth manly tones, of which he was so proud, just ended.  He had begun to get his singing voice back, and was working on building it back up after the tonsillectomy and chemoradiation, but I cut part of his vagus nerve, and his right vocal fold just quit. Hilarious! The guy had been so proud of that voice, made his living off it from time to time; he so enjoyed singing and speaking… but no more. Barely a stage whisper. Talk about STRESS! Of course, that hit to his vagus nerve also made it just a little harder to eat and drink and breathe… but STILL the doctors thought they might cut me out and cure him.

Another PET scan and some MRI’s finally exposed me in all my glory.  I had secured some of the most critical territory in Wayne’s body, thickly encasing his carotid artery and vagus nerve.  They know that trying to cut me out of there, with scalpel or radiation, would almost surely kill the host, so I am here to stay.

They do want to try more chemotherapy, of a different sort, including one drug that does give me chills.  The medonc wants to give Wayne a mixture of three drugs, then see if they can taper off to one.  Carboplatin is a lot like the Cisplatin he already had.  5FU is also pretty toxic, and similar to Cisplatin as well, but Erbitux is different. It’s called a targeting drug.  I have many clever ways to keep ahead of the immune system, including camouflage.  Carcinomas like me are particularly similar to the connective tissues where we begin our lives, and we can pretend to be just a normal skin cell, multiplying as the body wants us to.  The immune system passes us by, and we continue to grow.  Erbitux helps the white blood cells to see through my disguise.  If Erbitux works, Wayne’s immune system has recovered enough that it just might be able to make life really hard on me.  We’ll see.  I have more tricks I can use, and a will to live unlike anything else humans have ever met.  Wayne has a real fight on his hands, and all the doctors and all their weapons have lost many battles to me. My purpose is to live, and I will fight like the fires of hell to do that.

                                          —S. C.Carcinoma

 

Thursday, 2016/05/12 – Throw Back the Lemons

I’m going to start connecting some of my posts here to posts on my main literary site, http://waynesl.me   Last summer, before I knew I had cancer, I had just begun writing up the preposterous story of how I had broken my collarbone on a bike trail, some 20 years before.  When I learned about the cancer, I thought to perhaps tell that tale as an expression of how hard I would fight to beat the cancer. Good intentions and flying pigs. Overcome by events, I let the story languish on my hard drive.  I just finished a story of surviving a dicey time flying, which happened clear back about 1978, and realize that it does relate to my current struggle, as does the mountain bike story, so I’m going to try writing Throwback Thursday tomes, some of which may be interesting asides to Attack of the Zombie Tonsil.

None of us knows when we will go, or how.  We do know we will.  Life always ends in death.  Mystical ideas aside, most of what happens between our birth and death is out of our control and uncertain until it has already come to pass.  If we are wise, we plan for both the best and worst chance, and hope to nudge fate toward what we prefer.

The first memoir on my literary site that I connected to ZombieLand was Rose Colored Reason, about the logic of faith.  The one I will offer today touches on faith, and planning, and taking life’s lemons and making lemonade:

Monday, 2016/05/16 – New Poison and a Balloon

▲FEATURED PHOTO▲
what the modern zombie fighter wears to battle

They don’t give me stickers or lollipops for behaving well at my chemo appointments, but today I got a balloon.  I don’t want to seem ungrateful, but I really was disappointed.  I had discussed getting chemo delivered by a portacath (portable catheter) with a fellow pilgrim on the Linac Limo. I’d seen his port and pump, and thought mine would be similar.  Nope; I got the “new, improved” version.  His port was covered with a 2” x 3” clear adhesive dressing, and had one tiny clear tube leading to a little blue pump.  I remember the device, which contained the meds, was no more than about 1” x 3” x 4” max.  I think it was smaller.  It had some LED’s and switches on it, and he kept it in a little pouch on his belt.  What my medonc told me I would get was something very similar, very small and precise, and unobtrusive. Here is what I got:

BalloonKludgeNot quite the same.  It’s a plastic ampoule, 2½” in diameter, by 7½” long; 8½’’ to the tip of the hanging clip. The business at the port is much bigger, more complex, and nasty-looking than what I remember my fellow pilgrim having, as well. It is what I would call a kludge: an unfortunate assemblage of mismatched parts forming a distressing whole.  It’s almost comically simple, in reality.  Instead of an electronically-regulated precision pump, metering out the toxic 5-FU (Fluorouracil) and monitoring its own progress, I get a balloon. Inside the clear plastic shell is a balloon full of poison. It wants to shrink. It will shrink until it has squeezed the poison into my vein (right at the atrium of my heart) through a filter and a regulator. The round blue filter is to stop any particles that form in the 5-FU from getting into my blood. Wow. The yellow plastic rectangle is designed to let exactly 1.9mL of 5FU into my heart each hour until I have 250mL in me, if it is kept at about 90°F, then quit.  There will still be about 15mL left in the balloon at that point, and the walls of the balloon will be parallel to one another.  I hope.  If the temperature varies by more than 10° F, hotter will make it faster, and cooler will make it slower.  So I’m sitting in the sun. I want this contraption off me ASAP.

MY POWER PORT
Yes. Really.  That is what they call it.

PowerPort

I was feeling pretty good about the “Power Port” being able to handle high-pressure IV feeds, and not having any plastic sticking out of my skin.  It turns out that my port is a central line, meaning that the catheter tube goes from the port, up to a handy spot to enter my vein, then down to the atrium of my heart. That is a particularly good place to deliver meds, because it gets mixed thoroughly and distributed evenly through the whole body.  When they want to get stuff into me now, they just poke through my skin with a short needle, into the port, and no hunting for veins and long tubes to thread and thread again.  I like that.  Then came the balloon.  Oh, well.

One pleasant surprise. I misunderstood which meds would be given which way. The medication for which I have the greatest hope, Cetuximab, was a relatively quick infusion. It took only 2 hours today, perhaps as little as 1 hour from here on) rather than requiring the “pump” as I had thought.  It’s the nasty, unpleasant 5-FU that is in the pump, and after two cycles of that, I probably won’t need any more. Carboplatin is a lot like Cisplatin (what I had before) but more stable and less toxic. The plan is for me to get two courses of all three, then quit the 5-FU and Carboplatin (the two most dangerous and bothersome of the three) and continue with just the Cetuximab, until I am in remission. The next 42 days may be tough, but I doubt they can be any worse for me than October and November. Maybe we can make them difficult for the cancer instead.

Lessons Learned and Survived

 

My  #ThrowbackThursday offering this week is about me getting into trouble, squeaking by, and learning a lesson.  I never again did what I did in this story, and it’s a good thing.  Cancer is teaching me lessons, too; things I now avoid, and things I now make extra effort to do, new ways of seeing that which has too often gone unnoticed or seen too narrowly… and some new feelings about life and its beginnings and endings. New priorities. The story is: http://waynesl.me/swamp-pirates/

2016/06/17 – Weight Wars

I have not updated this blog in a while, because the new chemo is kicking my butt.
Cetuximab is the most powerful thing available to Kaiser for my particular type of cancer  The other two, which I have had twice now as well, are pretty nasty too.  In addition to causing gridlock in my digestion (followed by a roadrace) and a lot of nausea, they give me such fatigue that sometimes it is hard to move across the apartment .  The Cetuximab also causes a rash, because it attacks epithelial cells which are actively growing, like my cancer — but also my skin.  The rash is a lot like acne, but moves around.  It causes skin sloughing, pain, and sometimes bleeding. Started on my forehead, spread to my cheeks, then jaw, and now my chest.  The only thing I was allowed to use on it was an antibiotic called Clindamycin, which is 50% Isopropyl alcohol.  Stings like blazes, but does eventually relieve some of the scaling and breakouts.  Then a few days ago, the Infusion Pharmacist told me I could add Hydrocortisone, which really helps.
Eating and drinking have become more and more painful, tiring, and slow.  I will get afeeding tube on Tuesday, 6/21. I resisted it from September until now, but I see that it is necessary.  The tube will be installed under a general anesthetic, and I will be taught how to use it… Soon, I hope.  

I have found that even pure, RO filtered water stings my mouth, especially my tongue.  Ice cold things are easier to drink, as are thinner mixtures, and dissolving a little bit of just about anything in the water makes it easier to drink, stinging less.  I am learning anew the value of a cold compress on the forehead, or wherever the rash is bad.

Weight6mos20160617
The last 6 months of my battle with cachexia

I have been researching foods to use in the PEG tube, and I see some products online which look promising.  I am also hoping  that I’ll be able to make fresh juices and smoothies and such to put down the tube. My diet has gotten narrower and narrower, and I know I will benefit from fresh, organic produce, if I can get it down the tube.  I guess I am becoming numb to these incessant changes, because I am not at all concerned about the procedure tomorrow, though I know it will be unpleasant for at least a week.
At least I can see that July 11th will be my last Cetuximab infusion, unless Dr. B thinks more will help.  That will surely be a relief.  Now for some Ensure on Ice, La Boisson du Jour.

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.