Tuesday, July 30, 2013

Feeding Tube Makeover

The stuff I put in my feeding tube comes in whatever flavor you want as long as it's vanilla.

It's not like I taste it anyway.

The Progeny, however, like to give me encouragement by helping me imagine I'm eating real food. So they hacked it.

As always, click the image to embiggen it.

The Final Poison

Sorry to be silent for a few days.

Today is the last of my three Cisplatin (chemotherapy) infusions.

In the first two cycles the infusion day was pretty uneventful. I have felt a little weird in the evening but not too bad. It's the following 3-5 days that I've felt off, due to the anti-nausea medications I take during that period.

In the first two cycles, that caused me to be silent for the rest of the week following chemo. We'll see.

I had some very good days last week. Wednesday was pretty decent, and Thursday and Friday I almost felt normal except for "eating" through a tube.

Last week Progeny the Elder attended Girl's Rock Camp in Boston. It was her second year. In one week, campers learn an instrument (PtE chose drums this year), form a band, compose a song and rehearse it. Then on Saturday there is a "concert" in a real music venue in Brighton where each band performs their song before a screaming audience of 100-200 parents and friends. I really didn't want to miss that.

We tried to plan ahead for feeding and hydration, and we took two cars so that I could arrive not long before Progeny the Elder's band (The Lone Wolf's) would perform and leave right after.

But it was still too much. I was exhausted the rest of the day.

Then Sunday was a not-so-good day. The mucous production level changes from day to day and Sunday it was at 11. When it's flowing that fast I can't keep up and then drainage from The Sinus Infection That Won't Go Away makes it to my stomach and makes it feel very sour. Anti-nausea medicine (Zofran) didn't work completely. I even tried a Tums but that didn't help either.

We have almost all my drugs in liquid form now so I can put them in my tube. We realized later Sunday that the liquid Omeprazole (Prilosec) separates quickly and we may not have been shaking it, or shaking it well enough, before each daily dose. So I may have been getting widely varying actual doses. We're being more careful now, but that could have contributed to Sunday's stomach troubles.

They continued on Monday. I was trying to feed at 7:00 AM. Little Sister came downstairs and was sitting with me. She asked how my stomach was and at that moment it started to feel quite bad. Thirty seconds later I was running to the bathroom. I vomited up the small amount I had fed, plus A Very Large Volume of other contents. I had put in 2.5 liters of fluid during the night and that all came up. Plus food from the day before.

Clearly my stomach has not been emptying.

Yesterday I had IV fluids again and the team all worked with me to figure it out. The main solution is to take Reglan before eating. That's a normal part of the routine in the three days post-chemo but this is the first time I've taken it outside that period. So far, so good last night and this morning.

I have been extremely anxious about the last chemo. The first two went well, but both of those occurred before the radiation effects kicked in. In fact, it was the Sunday after the last chemo that the Mucous Wars began. I have to really hack and cough to get the mucous out of my throat. Also, when the mucous is especially thick, a cough will sometimes only bring it partway up. Having that glob of mucous half way out of my throat sometimes makes me gag. I have to consciously relax and give it a second until I can cough again and get it the rest of the way out. I worry that, since the anti-nausea drugs just barely tamp down the chemo-induced nausea that that hacking and coughing and gagging are going to cause me to vomit a lot.

But maybe I'm making up a problem that won't exist.

We shall see.

So maybe I'll miraculously feel great this week and you'll hear from me soon. Or maybe not. But I'll be back with you as soon as I'm able.

Regardless of what happens, it will be a huge relief to be finished with chemotherapy. Then radiation ends next Thursday.

Friday, July 26, 2013

A Crying Shame

I've written a fair bit about crying here. I know that in our culture it can seem pretty strange for a 53-year-old man to tell you he cries a lot. I don't have much occasion to cry these days when I don't have cancer. But cancer treatment has presented me with ample opportunities.

I grew up in a household with two sisters. My Dad, typically for the 60's, worked (and travelled) a lot. So it was a pretty estrogen-rich household most of the time. I have always identified with women due to that and I probably have a slightly stronger feminine component than the average men.

In addition, I was fortunate to have a mother who taught me very well that it was always OK to show one's emotions when needed. She encouraged me to cry when I needed to, and not to be ashamed of doing so.

Our 60's household exhibited the typical family dysfunctions of the age. I spent several years, off and on in my 20s and 30s, in various forms of therapy or support groups. Mostly trying to figure out relationships and how to be a functional partner in one but with plenty of benefits in other areas of my life, too. During those times, I found that when I was crying it often meant I was about to uncover a new bit of truth about myself. Approaching that truth would always be painful. And acknowledging it was always a huge relief. And each one opened doors to yet more discoveries and growth. I eventually remodeled myself into someone I'm fairly proud of and crying was a central part of that process.

The bottom line is that I believe crying is valuable and necessary and I'm glad that I can do it (and admit to doing it) without much embarrassment.

In this cancer experience, Wonderful Wife and I felt pretty emotionally walloped by the whole diagnosis process. When treatment started, I felt like I had very minimal emotional reserves. When the insults of treatment began to accumulate, all reserves were dissipated.

On bad days I have described my disposition to Wonderful Wife as "My skin is very thin today." On those days I might be sitting on the sofa waiting for the discomfort of the day to pass and I'll just spontaneously start crying. And many times I have hugged Wonderful Wife or my sisters only to cry on their shoulders.

One benefit is that The Progeny have now seen their dad cry. It scared them the first time. But I explained to them that I was just very tired of feeling sick all the time and I felt worn out. They understood that. In fact, they started giving me even more sympathy and encouragement.

Finally, I also talk about crying on this blog because when I started it my intent was to describe the experience as honestly as I possibly could.

P.S. After Big Sister caught up on the blog, she said to me, "The parts I like best are where you talk about your emotions." Big Sister, this post is dedicated to you.

Suck It

I took delivery of a rented suction machine today.

It's pretty simple:

  1. Turn it on
  2. Suck
  3. Profit!

It works pretty well when I'm sitting watching TV or using the computer. Instead of spitting into a spittoon every few minutes I can just suck the mucous away.

I think it does have the drawback I expected: it only removes mucous from my mouth but my throat is also producing mucous. So I still have to cough that crap up every so often.

But if I'm hydrated and stay relaxed about the coughing that isn't so bad.

Another tool in the toolbox.

Mucous Mitigation

Mucous management is much improved.

Last night I did the same thing: traded sleep for hydration. I got in three liters of fluids between 2:00-7:00 AM. Actually I didn't get that much less sleep than before I was doing the all-night hydration.

This morning the mucous clearance ritual was much less violent, and brief! It probably took less than an hour to get all the mucous out of my throat.

My sinus infection continues to improve, albeit slowly. I'm 6 days into a 14-day course of antibiotics so plenty more opportunity for it to work. All the extra IV and home hydration should help that process - you need hydration so that the blood flow can reach the infected areas to deliver the antibiotic.

I think the sinus infection improvement is contributing to the mucous clearance improvement. It's those chunky yellow globs that are the most difficult to get out, and there are now fewer of them.

The easy morning led to a really good day. I'll take it.

I get the weekend off. Then radiation all next week and my last chemo on Tuesday. The second chemo went better than the first, so maybe the third chemo will be no big deal. It partially depends on what new radiation side effects might show up between now and then.

Then the following week just four days of radiation and I'M DONE!

Don't worry, there'll be plenty to tell as the residual radiation side effects occur and then subside. Then plenty more to tell as I begin to recover.

Thursday, July 25, 2013


After the horrible experiences described in yesterday's Ultraviolence post I was determined to avoid repeating the experience.

I put in three liters of fluid during the night, between 2:00 and 6:00 AM. Some Pedialyte, some Gatorade and the rest water. The trade-off was even less sleep than I've already been getting. I'll try to nap more during the day.

So far, so good. It's still taking a couple of hours to clear the night's accumulation, but with a much lower level of violence.

I'm focusing on calming myself between coughs.

There's still pain and blood, but so far every cough has been productive. In another hour I should have the accumulation cleared.

Hopefully this strategy will continue to work.

Happy Birthday, Rosalind

I've discussed DNA a fair bit on this blog, since the treatments I am undergoing work by damaging DNA.

You probably know that the two men who received the credit for the elucidation of the double-helix structure of DNA are James Watson and Francis Crick. But they probably couldn't have discerned that structure without the x-ray crystallography work of Rosalind Franklin.

Specifically, this image:

Unfortunately Rosalind did not receive recognition for her contribution until after her death (she died in 1958).

Happy Birthday, Rosalind!

Wednesday, July 24, 2013


A few posts ago I wrote that we thought we had found the solution to the painful morning process of clearing mucous that accumulated and thickened during the night due to the over night period of not hydrating.

I really did think we had figured out that problem and could maybe sail for a few days with no major issues.

But starting yesterday the morning travail was back.

Yesterday I had two huge coughing fits in the morning. One of them was in the car. They start with the tickle in my throat but they turn into uncontrollable fits of spastic coughing, gasping, retching and vomiting. And blood.

They last about 5 minutes or more. After a few coughs there is nothing left to cough up, but the coughing persists. It involves considerable throat pain.

I spend the time bent over a receptacle, sobbing and swearing and trying to relax and make it stop. And with multiple strings of tenacious mucous hanging from my mouth and nose to the receptacle.

I don't know how to stop it. Eventually it stops on it's own somehow.

I described these events to my doctor as "Throat Violence."

This morning was Throat Ultraviolence. The worst one yet.

I think it was made worse by the bolus feeding of Ensure I had just done. The retching brought a froth of Ensure up into my esophagus so I had phlegm at one end and food froth at the other. I would cough hard and then my body would try to involuntarily inhale. I was terrified I was going to aspirate a bunch of that mess. I had to voluntarily slam my epiglottis shut several times to prevent aspiration. The spastic nature of my "breathing" (i.e. coughing and gasping) just seemed to push the mess back and forth in my throat with no progress. I was afraid of drowning.

It was 6:30 AM and I had come downstairs to the TV room for a change of scenery, since I had been awake since 4:00. So I was also alone. Somehow Wonderful Wife heard my coughing over the sound of the air conditioner upstairs and joined me and tried to comfort me through the latter portion of the unpleasantness and slow resolution.

When it finally subsided, I felt completely crushed. Spent. Afraid of it happening again. Afraid of it happening every morning for the next month.

Afterward I curled up catatonic in an upright ball on the sofa for an hour. Upright because I can never lie down. Lying down almost immediately leads to more coughing.

I needed to go to the hospital in an hour for radiation and hydration. I couldn't stop crying and I was imagining walking through the lobby sobbing.

I started a gravity feeding so at least I would have some calories to go on.

I realized I had to come out of my catatonic cave and acknowledge that the terrible thing was no longer happening. I tried to find a happy place in my memories. I paid attention to whatever was on the TV to take my attention off my fear. I took deep breaths. Little Sister massaged my head for a long time.

Then I got dressed and ready to leave.

The air conditioning blowing on my face in the car helped. By the time we got to Dana Farber I was able to face the world without crying. I made it through radiation treatment alright.

Then we went upstairs for hydration. That's the one good thing that happens to me at the hospital: the thing from which I emerge better than when I arrived.

Of course the first thing the infusion nurse asked me was "How are you doing?" I answered "Horrible" and burst into tears. She immediately came over and touched me and started asking why. Wonderful Wife and Little Sister were able to tell her most of it. I was able to calm myself and tell her the rest.

We confirmed to her that I am taking the tussin (expectorant) every four hours around the clock and trying to hydrate as much as possible.

We talked again about a suction machine and decided to request they order one for home. It can't hurt.

The nurse offered me Adavan in my IV. She said they use it a lot in the infusion center, it calms people down and even puts people to sleep.


It worked just like she promised. I did calm down. And I did fall asleep for a while.

Apparently the hydration is going to be a constant battle. I feel like I'm doing a lot and yet I still have dry periods during which the mucous accumulates in my throat and thickens. That means Throat Violence to come.

Some of that accumulation is due to the sinus infection. I've been on antibiotics for four and a half days now. I think I'm noticing a decrease in the amount of opaque, chunky, yellow mucous that is its hallmark. Hopefully it is resolving. If so I hope that lowers the level of violence.

Way back at the beginning, Big Sister and Friend Paul told me that the worst period would be the last two weeks of treatment and the first two weeks after treatment ends. Tomorrow marks two weeks until the end of treatment. So I guess I'm entering the hell month.

This is hard. And I'm frightened.

Feeding the Beast

I'm feeding solely by feeding tube these days.

There are two ways to do it: "bolus feeding" and "gravity feeding".

For bolus feeding, I stick a big 60cc syringe body in my feeding tube and then pour food into it. Usually Isosource 1.5 CAL. Sometimes Ensure. With bolus feeding I have to adjust the height at which I hold the syringe - the difference in height between the syringe and my stomach controls the flow rate. I'm supposed to let it flow at a very slow rate ("you should barely be able to see it move") to avoid bloating.

It takes about 10-15 minutes to get in an 8oz container of food that way.

With gravity feeding, I use an IV stand and bags that are similar to an IV drug bag but made for feeding (i.e. made much more cheaply - the lids won't even close). It has a drip chamber like an IV so you see the drip rate, and a valve that controls the drip rate. I put the fitting at the end of the hose in my feeding tube and adjust the drip rate and then I'm free to do other things (or sleep) while the food or fluids drip in.

Gravity feed is quite convenient.

I'm not really sure what drip rate I should use for food. I usually set it at about 3-4 drips per second. That's a pretty slow rate compared to if I were drinking the food, but it prevents any stomach bloating or discomfort.

It's not like I'm in a hurry to go anywhere.

One distinction between bolus feeding and gravity feeding will be important in the next post. With bolus feeding the entire feeding is essentially in my stomach simultaneously. But with gravity feeding at a slow drip rate I imagine there is never very much food in my stomach at any one time. I assume it leaves my stomach at a rate close to the input rate.

The Works

These are my drug works.

Except I don't shoot up. I put it in my feeding tube.

Every time me or one of my helpers prepares this we feel like we are preparing heroin.

Monday, July 22, 2013

For Your Reading Pleasure

This is a post I composed more than a month ago. I intended to go back through the book and be accurate about the dates when various treatments were introduced, but I don't have the energy to do that now. Please excuse any errors of that type.

As I mentioned in the beginning, learning about cancer has been a hobby of mine for the past several years. And we all know that recently I've started Living The Dream by becoming even more engrossed in the complete cancer experience.

Well, not truly complete. My cancer doesn't come with surgery (yet) so I am being denied the experience of removal of some useful part of my body.

But still.

If my experience is inspiring you to consider cancer as a hobby, I can recommend two great foundational documents.

The first is a book published in 2010 titled "The Emperor of All Maladies: A Biography of Cancer", by Siddhartha Mukherjee.

My second favorite cancer document is an academic paper that I'll describe in a future post.

I'll just steal the information about the book and author from Wikipedia:

Siddhartha Mukherjee (born 1970) is an Indian-born American physician, scientist and author. He wrote the 2010 book, The Emperor of All Maladies: A Biography of Cancer, which won the Pulitzer Prize for General Nonfiction and the Guardian Prize, was nominated for the National Book Critics Circle Award and was described by Time magazine as one of the 100 most influential books of the last 100 years, and by The New York Times Magazine as among the 100 best works of non-fiction.

Currently he is an assistant professor of medicine at Columbia University and staff physician at Columbia University Medical Center in New York City. He has been the Plummer Visiting Professor at the Mayo Clinic in Rochester, the Joseph Garland lecturer at the Massachusetts Medical Society and an honorary visiting professor at Johns Hopkins School of Medicine.

A hematologist and oncologist, Mukherjee is also known for his work on the formation of blood and the interactions between the micro-environment (or "niche") and cancer cells.

Given the prizes the book won you can guess that the book is good. Obviously I agree. The best aspect of the book is captured in the subtitle, "A Biography of Cancer." Mukherjee traces the history of cancer from ancient times to the present.

The entire book is a fantastic treatment and very readable. I'll describe some of my favorite aspects.

The first impression I formed was how young the concept of "cancer treatment" is. Even though cancer was described as a disease as far back as the ancient Egyptians and Greeks, up until the early 20th century there were no treatments for virtually any type of cancer. If you were diagnosed with cancer before that time, doctors would not even want to see you any more - you were doomed and they had no tools whatsoever to help you.

The first treatment was surgery, which emerged in the late 19th century. If a tumor was localized, surgery might successfully treat it. Surgeons learned over time that if they left any cancer in the patient, it would recur. Thus the emergence of procedures like the radical mastectomy. Mukherjee points out that "radical" in this context doesn't mean "extreme", it means "root" - the radical mastectomy evolved because surgeons were trying to get all of the cancer, including its "root". Given that, surgeons did indeed take it to extremes. Mukherjee's descriptions of radical mastectomies at their most extreme in the 1920s are horrifying.

That legacy of surgeons leading the way on cancer treatment would have serious implications decades later. In the 1950's through the 1970's as chemotherapy began to emerge it was very difficult to prove its effectiveness because women traditionally saw a surgeon first and surgeons were disinclined to refer patients to trials that evaluated non-surgical treatments. In fact, surgeons were outright hostile toward non-surgical treatments.

Of course, surgery was of no use for non-localized cancers like leukemia. So researcher kept searching for other ways to attack cancer.

Radiation therapy emerged around the turn of the 20th century but was relatively crude. It could also only be used to target localized cancers, and the use of radiation is a delicate balance - in cancer treatment one wants to deliver enough to kill the cancer cells but not so much that a new cancer is spawned years or decades later.

Chemotherapy didn't emerge until the 1950's, having been discovered and pioneered by Sydney Farber at Children's Hospital in Boston in the late 1940's. Its use grew through the 1950's and became mainstream, especially for leukemia and other blood cancers, in the 1960's.

It wasn't until the 1970s that what I think of as modern cancer treatment, informed combinations of surgery, chemotherapy and radiation, became the norm.

Muckerjee also covers the political emergence of cancer and the emergence of large advocacy organizations like the American Cancer Society, mostly the work of Mary Lasker. And he describes the early days of cancer research at the National Institutes of Health and then the National Cancer Institute.

The book concludes with a sort of philosophical discussion of the unique nature of cancer that makes it hard to defeat. After all, cancer is us. it is our own cells gone haywire. That can make it very hard to attack because one must devise treatments that can discern "normal self" from "cancerous self". That turns out to be a very difficult biological task. Especially given that cancer cells have devised ways to, among other things, evade recognition.

I can't recommend the book more highly.


Life is improved.

I had a very good day most of the day yesterday. I even went on a couple of shopping errands with Wonderful Wife.

It was very exciting. We bought a new garbage can.

Today hasn't been quite as good but still one of my better days lately.

Last Friday I received two liters of IV fluids at Dana Farber to try to boost hydration and help loosen the mucous. It worked very quickly - about halfway through the first liter I started being able to get the mucous up and out without painful throat gymnastics. It was good timing, because those throat gymnastics were starting to produce a little blood.

I was compelled to do those throat gymnastics, even though before extra hydration they were painful. I'd have the constant feeling of sheets of phlegm draping my throat. I think it probably didn't really go that far, but it felt like those curtains of phlegm extended all the way down my esophagus. And sometimes I would get that tickle in my throat that forces one to cough.

I was a little mystified why IV fluids would seem to work so much better than fluids put into my stomach via my feeding tube. That's still a bit of a mystery, but starting Saturday we really pumped up the fluids I'm putting in. At least 3-4 liters a day.

I also started hanging a liter of fluid on the IV stand (I used an IV stand to hang bags of fluid and food so my hands are free) next to the bed, and when I wake up at 3:00 or 4:00 AM (I wake up many times per night) I hook up that water with a slow drip and go back to sleep. I also hang another liter around 6:00 or 7:00 AM and go back to sleep or lie in bed. That removes that dry period in the morning and also helps to avoid the build-up of thickened mucous I have to deal with when I get up. Before this strategy, I would have a couple of hours of discomfort after getting up while I cleared that backlog.

So those measures have helped me achieve the same easier expectoration of mucous that the IV fluids produced. That's a huge relief. Even the gloppier clumps that are in my throat can be "blown" out without hard "hawking". The level of throat violence is substantially reduced.

On Friday afternoon I suddenly realized, "Hey, there are a lot of opaque yellow chunky globs coming out. That's what a sinus infection looks like." If you remember, I had a sinus infection on June 24 and took a course of antibiotics for it. But we got so distracted by the other issues we were dealing with that we never followed up - specifically we never reminded my doctors to check my throat for pus to see if the infection had been cleared.

On Saturday we went to my primary physician's office (because it's closer) to have someone take a look. Doctor G said it was inconclusive. She couldn't see obvious pus, but the yellow mucous I described seemed pretty confirmatory that I in fact still have a sinus infection. It has certainly added to the mucous misery.

We had called Doctor Chemo first on Saturday morning. She was very concerned. She thought that if I had an obvious infection I probably needed to get to a hospital and have IV antibiotics. The reason is that my white cell counts are just about to reach nadir from the last round of chemo (the immune system is most compromised about 10-14 days after the chemo infusion).

But Doctor G and Doctor Chemo consulted and decided IV antibiotics were not needed. Doctor G wrote a prescription for Clarithromycin in liquid form that I can put in my tube. I've been on that since Saturday evening. Let's hope it works. It's a 14 day course.

At first I was angry that my Dana Farber doctors hadn't followed up closely after I told them about the sinus infection on June 24th. But in my conversation with Doctor G I realized that my sinus infections are weird. I have been getting sinus infections after colds for decades. But the only symptom I ever have is the thick, colored mucous. I don't get sinus headaches, which are the main complaint of most people with sinusitis. So it's understandable that since I wasn't complaining of symptoms my Dana Farber doctors assumed it was resolved. In retrospect, I should have been reminding them to assess it regularly.

The other issue we're trying to troubleshoot is headaches. I get them kind of suddenly, and they hurt pretty badly for a few hours. Yesterday, for example, I felt great all day but then had a painful headache from about 7:00-10:00 PM. Tylenol helps but does not get rid of it.

Our theory of the moment is that the headaches are due to not taking Adavan on schedule. Today we're trying to be more careful about getting that in every four hours (as directed) to see if we can avoid the headache.

Today has been pretty decent. We had to get Progeny the Elder to a camp on the other side of Boston by 8:30, meaning we had to leave home at 7:30 and deal with rush hour traffic. Last night I didn't think I'd be able to do that, but this morning I woke up at 6:00 and got in fluids and food and felt pretty good so I went along. It was better logistically for me to go because the camp location is not far from Dana Farber and I had a 10:00 AM appointment there. Anyway, it went well. We got home at 1:00 PM and while I haven't felt as good as yesterday it's still a pretty good day.

I value these good days. Mark them off the calendar. I'm starting to let myself envision the end. I have radiation all this week, chemo and radiation next week, then just a few days of radiation the week after that and I'm done.

I can do it.

Saturday, July 20, 2013

The Invisible Man

A couple of weeks ago I obtained the disc with my PET and CT scans on it but I haven't had the energy to get the images posted. Until now.

The first image is my whole body PET scan. Remember how PET works: they injected me with a weakly radioactively tagged sugar and waited 50 minutes for the sugar to be taken up by the cells in the body that are metabolizing most rapidly. They they put me in a scanner that can detect the radiation being emitted from within my body and can also locate those emissions.

The radioactive tag is circulating in the blood so it shows up in organs that are involved in circulating and filtering blood: the heart, kidneys, liver and bladder. The brain is the most highly metabolically active organ in the body so it lights up brightly.

What we really care about are areas of the body that are not on the list yet still lit up. In my image, there is a very bright blob in my throat. That is my tongue tumor, Pappy the Papilloma.

Of course at the time of this scan we already knew Pappy was there and was malignant because the biopsy had taken physical pieces of him. The real purpose of this scan was to see whether the cancer had spread anywhere else. The most common place for my tongue cancer to spread would be the lungs. You can see that the lungs contain no bright spots whatsoever. Good news.

The PET scanner is fairly low resolution, mostly due to the low radioactivity signal available (you want to put the minimum radioactivity possible into the patient). To get a more precise sense of what anatomical structures are involved, the combine PET with CT. CT is x-ray based and produces a detailed anatomical picture.

This image shows the combined PET and CT. You are looking at me from the front. Imagine I was laid on a table and then sliced like a hoagie roll. You're looking at the bottom half of the sliced roll. You can see along the edges of my chest that the imaginary knife passed through my ribs. You can see muscles in my legs, abdominal wall and shoulders. And you can see the PET data glowing through in my neck.

This is a single slice that I chose. Using the real software, the doctors can move the slice planes around wherever they want to focus on particular structures or areas. They can get a very precise picture of exactly where the tumor is and how it is attached to or involved with the surrounding non-cancer tissue. That helps them plan how to attack it.


Friend Ark commented on "Reader Discretion is Advised" and said:

I'm impressed how brave you're being

A lot of people have sent me messages telling me how brave and courageous I am. I appreciate the sentiments, but from my point of view I feel neither brave or courageous.

Both of those involve making a choice to perform an act because its benefits outweigh its consequences. A person might choose to enter a burning building to rescue someone because they perceive the saved life to be worth more than the injuries (or death) the rescuer might experience.

On purely technical grounds, I have made such a choice. I have chosen to try to go on living with my wife and children at the cost of undergoing barbaric cancer treatment. But really, would any of you consider that a true choice?

The only alternative is to decide not to seek treatment and just let the cancer kill me, abandoning my family. And also, by the way, choosing a pretty gruesome death unless I decided to take a shortcut.

Big Sister tells me that many people do make the choice not to treat cancer. But they are mostly quite elderly and they make the calculation that they could have perhaps a year of feeling good before they decline versus a year of feeling crappy in treatment with perhaps the same outcome. But that is a far different choice than mine.

So I do not feel brave for having chosen to undergo treatment. And as you can tell from my recent whinging about the experience, I don't feel especially courageous about enduring treatment. I feel grimly determined to drag my ass through it because the desired outcome - watching my children grow up and then growing old with Wonderful Wife - is so valuable.

In my moral world there was no choice.

My Dance Card

Friend Ark commented on "Reader Discretion is Advised" and asked questions. His first set of questions were:

What are you doing with your time apart from all the suffering. Are you able to watch Le Tour? are you too exhausted to go walk outside?

At the beginning of treatment I though I might actually be going in to the office during the second week and maybe a little the third. I think I actually went in on Monday in Week 2. The rest of the time I haven't felt well enough. I've tried to keep up on my work email (just getting rid of junk and monitoring my former projects - I haven't contributed anything in a while).

So I've been pretty much a hermit through it all, surrounded by my lovely family.

I get out every weekday to go to radiation treatment. That involves a drive into the Dana Farber Cancer Institute in Boston (the "Fah buh"). With no traffic it's a 20 minute drive each way. With traffic it is an hour or more. The first two weeks we had afternoon times so always had traffic at least one direction. Then we switched to a fixed 11:00 AM appointment every day. Most of the time we have pretty easy traffic now but we are sometimes surprised.

On Tuesdays I meet with Doctor Chemo before radiation for a weekly checkin. On Thursdays we meet with Doctor Rad to discuss the progress of radiation therapy.

Speaking of which, last week Lumpy the Lymph Node shrunk almost completely. I can still feel him, but he is now the size of a pea. At his largest he was the size (and firmness) of a ping pong ball. I think I mentioned before that Lumpy wasn't actually cancerous - he was just responding to the nearby cancer. He is now returning to life as a normal lymph node.

I haven't been out of the house to do anything else in a couple of weeks. It's hard to imagine going out in public because I need to carry a bottle of mouth rinse (water with a little salt and baking soda) and a container to spit into. And sometimes I have to work to get the mucous out and most people would find that sound pretty offensive.

It doesn't sound very fun to go out to eat with the family. Food still looks and smells great, but in my mouth it is abhorrent. I sit with them at the dinner table to be social but it reminds me that I'm not going to taste food anywhere close to normal for probably at least two months from now.

As for walking outside, I'd love to! But we've had two different heat waves during my treatment. For the past seven days temps have been in the mid to high 90s with high humidity. No one wants to go outside. I stay in the air-conditioned house. Our lovely neighbors Glenda and Victor loaned us a high-capacity window air conditioner that nicely cools our entire ground floor. I would be even more miserable without that.

The heat wave is supposed to break tonight with temps for the next week in the 70s and 80s. I hope to get out for some walks in that more pleasant weather.

Supposedly I will eventually become fatigued enough that I will spend all my time on the sofa (or the recliner we've rented). So far I don't feel much physical fatigue, my fatigue is mental.

I also spend a fair bit of my time feeding and hydrating now. It takes an hour or more to get in a two-can "meal" plus some water. Then at other times I work on getting in Gatorade or Pedialyte or more water. So that all adds up to 4-5 hours per day.

Finally, I spend a fair bit of time just feeling bad. It's unpredictable, but I'll suddenly have a bad headache or a really sour stomach or some other discomfort that makes me just want to lie still for an hour or so, often without stimulation of any kind including TV.

Big Sister was here for a week and half and left Wednesday. Little Sister arrived Wednesday and is staying for more than two weeks. She'll be relieved by Los Parentes who will be here when treatment ends and then finally Wonderful Wife's parents, who I'll dub Los Generositos, will arrive and support us for perhaps a couple of weeks. It has been wonderful having family here. The biggest benefit is that The Progeny get to have a somewhat normal summer with their aunts taking them on outings and swimming and otherwise entertaining them. And during those times I've felt especially crappy my sisters have spent many hours rubbing my feet or head - it has been most comforting. Sibling love manifested. It's wonderful and I am so grateful.

As for Le Tour? I've watched every minute of it. I Tivo the 4-5 hour live program in the morning and watch it during the day. It's a really nice distraction. On those long flat stages I can doze through it and still keep track of what's happening and see the finish. It's the highlight of my day.

I always have withdrawal after the Tour ends. This year that withdrawal is going to be even worse. I'm really going to miss it on Monday. I think they should start over and do it again!

I think it's been an especially exciting tour this year. It seems like it must be mostly clean as everyone has shown signs of weakness at one point or another. I'm excited about the nighttime finish in Paris tomorrow.

Tracker Keeper

I made this chart a couple of weeks ago when the number of drugs I had to take, and their schedules, became too much to remember. I have a different version for Chemo Weeks with even more drugs on it.

Several of these drugs cause constipation, so I also track bowel activity and the things I've taken to try to manage it.

Since I'm on a completely liquid diet now, I live on IsoSource 1.5 CAL from Nestle. For my personal caloric requirements I need to ingest six "cans" per day (it comes in cartons now, but everyone refers to them as "cans").

I also need to get at least two liters of non-food fluid per day, although I'm about to crank that up to three liters. Two has not been enough.

In normal times I take Metamucil every day to augment the fiber in my diet. I have that on the chart but haven't been doing it. I'm going to make a new version of the chart momentarily and I'll take it off. I can't swallow that much liquid at one go, and it is too gelatinous to put through my feeding tube.

Treatment can be very hard on teeth. I'm missing the saliva that protects teeth with antimicrobial properties. And that Apoptosis Stew that has replaced my saliva can't be too beneficial for teeth. Part of the prep for treatment was to have "fluoride trays" made. You put fluoride gel in them and place them on your teeth for a minute to bathe your teeth in fluoride, then remove the trays but don't rinse for 30 minutes.

Unfortunately, my mouth is now very sensitive and the tray edges abrade my tongue and gums. I can't use them. I brush on a little fluoride on some nights, but it stings pretty badly. It also gets washed away pretty quickly because I am rinsing the Apoptosis Stew out of my mouth every few minutes. I can't do it all. I'm just hoping my excellent pre-cancer dental health and my constant rinsing carry me through.

The radiation, by the way, can also permanently weaken and partially deaden the bone in the jaw. It may not be possible for me to ever get a dental implant again because my bone will not be vivacious enough to bond with the implant.

Friday, July 19, 2013

Reader Discretion Is Advised

Testing.    Testing.   One.  Two.  Three.


Is this thing still on?

I have been trying to write this post for more than a week but haven't felt well enough. We'll see how it goes this evening. Might have to compose in short shifts.

If I had written it on Tuesday it would have been a different piece. It would have said I was in hell.

Or perhaps I'm a big baby.

I'll warn you that I'm going to describe some side effects that are pretty disgusting. Read on at your own risk.

Remember back when I described how cancer treatment works? It works via DNA damage and takes advantage of the fact that cancer cells already have more than normal cells, and if you induce additional damage (in both the cancer cells and the nearby normal cells), the cancer cells will finally do what overly-DNA-damaged cells are supposed to do: commit suicide. The scientific term is apoptosis.

Well, the radiation therapy is cumulative. I didn't notice any effects of radiation for the first three weeks. I was the happy newbie who would greet the radiation techs with a smile and good cheer and happily have my head bolted to the table for my daily overdose of x-rays.

On Saturday, just as I was emerging from the Chemo Tunnel, radiation effects kicked in.

It was not a gradual process.

The radiation is inflaming and/or killing the lining of my oral cavity, roughly encompassing the back half of my mouth and my throat down to just above my voice box.

The cells do not inflame or die quietly. They are mucous membranes. They produce mucous. Mucous mixed with the spilled contents of dead cells.

Apoptosis Stew.

Imagine the cold you've had in the past that produced the most mucous ever. Now multiply it by some large number.

We're talking constant, high-volume mucous production here.

A production rate so fast that at times I can barely spit it out fast enough. I sometimes literally feel like I might drown.


So now imagine trying to sleep. I lie down and within a minute my mouth is full of mucous. I have to get up and spit. Repeat.

Somehow the first few nights I would manage to fall asleep anyway. Only to wake up an hour later with a throat full of thickened mucous. Go to the bathroom and close the door and spend a few minutes retching and coughing and working to get that mucous out of my throat and into the drain. Back to bed. Repeat. I woke up every hour almost like clockwork. Then by maybe 5:00 AM I'd be dehydrated enough that the mucous production would slow and I might sleep for two whole hours. But only to wake up with twice as much accumulation, and more thickened and deeper in my throat.

A few nights of that sleep-deprivation and my emotional state was not good.

I've said to a few friends: I wonder if the CIA ever considered using this treatment regimen as an "enhanced interrogation" technique. Earlier this week I would have told them anything they wanted to know, true or not. I was a broken man. I cried frequently. Even publicly.

It's still the same but I seem to have found some coping mechanisms.

I discovered that taking a puff of marijuana would dry up the secretions for a few hours. It left me with a very dry mouth, but it felt worth it. But I realized later that it wasn't a free lunch. The mucous was still be produced, just at a lower rate and thicker. I would end up with a serious accumulation of mucous cement in my throat that had to come out somehow.

Similarly, I tried stopping hydration several hours before dinner to try to get that 5:00 AM effect closer to bedtime. That also "worked", but had the same subsequent payback.

That morning I had such thick mucous so far down my throat that my body tried vomiting to get it out. But my stomach was empty so there was no "carrier" to carry the mucous up and out. Just painful retching. It took a lot of fluid intake and a couple of hours to finally loosen it and get it out.

Have I painted a rich enough picture of the mucous situation?

Today was radiation treatment 21 of 35: exactly 60% done. But remember that the radiation has a delayed effect. So I'll continue to have increased radiation effects for approximately two weeks after my last radiation treatment on August 8. I'm going to be dealing with this mucous for another month.


A couple of nights ago I put a pan right next to my pillow so I can just lift my head and spit into it, or sit up and spit into it. Not having to get all the way out of bed will hopefully let me get back to sleep more quickly. Last night I think I had a couple of 2-3 hour stints of sleep for the first time in a week.

My team at Dana Farber always has a pocketful of strategies for the problems I encounter. But for this problem the solutions are limited. I take tussin to thin the mucous, making it easier to spit up and out. I hydrate well every day.

They suggest that I try to sleep sitting up so the mucous will just drain. But mucous draining into my stomach make me nauseated. It made me vomit once.

I can rent a suction machine like the dentist uses to suck saliva out of your mouth. But they wouldn't recommend that I leave it in my mouth while sleeping. And it would only work in my mouth - it seems like more than half of the mucous production is happening in my throat.

One thing we did start, today, is more frequent IV infusions of fluids. I'm going to get them 2-3 times per week for the rest of treatment. The hope is that staying very well hydrated will keep the mucous loose and easy to get out. It works - I felt the mucous loosen soon after being hooked up today - but it also means sleeping is going to be difficult.

In the big scheme of things even this mucous problem might not be the end of the world. But let's recap my treatment experience so far:

  • Week 1: Chemo Round 1 and the disorienting and unpleasant side effects of the anti-nausea drugs.
  • Week 2: A volcano of stomach acid (since controlled). Then thrush.
  • Week 3: Feeding tube placement surgery and recovery. Loss of taste due to chemo.
  • Week 4: Chemo Round 2. Drug side effects better managed; not quite as disoriented and unpleasant. Loss of taste augmented with unpleasant metallic taste.
  • Week 5: Drowning in the mucous ocean.

It's a constant process of surprising new problems followed by a period of developing new coping mechanisms.

I suspect other people deal with this regimen better. For my particular personality the cumulative and concurrent nature of all of these lesser unpleasantnesses is pure torture. Especially combined with the knowledge that I have to endure it, and worse, for several more weeks. I don't even feel like I can celebrate being past half way because I know what I've gone through is the easy half. For example, sometime soon the radiation effects are going to progress to mouth sores. Lots of mouth sores.

In other news, I'm on 100% tube feeding now. I haven't put food in my mouth in almost a week. It's just too disgusting. The last thing I could eat was Cream of Wheat but now that is too disgusting also. Due to the apoptosis stew and the chemo-caused metallic taste in my mouth. I am managing to drink a cup of broth most days so that my swallow muscles don't atrophy completely. Apparently if I let those muscles atrophy relearning how to swallow is more difficult than one might imagine. So far I don't have a lot of swallowing pain. I will.

In case you missed it, here's what I tweeted this morning:

I realized today I'd "forgotten" I'm fighting cancer and come to believe I was undergoing pointless horrible torture a la Kafka.

That's where I've been all week.

Saturday, July 13, 2013

Still Emerging from the Chemo Tunnel

Hello, Dear Reader.

I'm still emerging from the post-chemo tunnel after Tuesday's infusion. Still feeling kinda funky and can't stare at a computer long enough to write a proper post.

Hopefully I'll be back with you tomorrow or Monday.

Thursday, July 11, 2013

In the Chemo Zone

I had my second of three chemo infusions on Tuesday. The infusion day is long but uneventful.

It starts at the lab for IV placement. I was nervous because of my one previous bad experience when I was dehydrated, but this IV placement went fine.

Then we meet with the Medical Oncologist, Doctor Chemo; NP Kate and Nurse Holly. They check in on what's happening for me and help us figure out how to meet various challenges. And Doctor Chemo also sets expectations for the next period.

The chemo depresses activity in the bone marrow, which leads to slowed production of white blood cells, which leads to an inability to deal with infection. We have to keep an eye on my temperature - any fever at all during this period means an immediate call to the doctor.

My white blood cells (neutrophils in particular) were barely above the threshold below which they would delay chemo. But the entire treatment regimen is timed to take advantage of the cell cycle and deliver damage at the optimum time and you don't really want to disrupt the schedule. Since I was above the threshold she/we decided to proceed.

I have access to all of my blood work, which gets taken at least weekly and sometimes twice a week. I'll try to get that organized and add a plot of my blood changes.

The infusion itself is easy. They put in a liter of saline, then a half liter of Emend solution and a shot of Aloxi, both anti-emetics that prevent both acute and delayed nausea and vomiting.

Then the nurse suits up in gown, gloves and mask to obtain the chemo from the pharmacy and hang it on my IV stand. She verifies that it is the right dose and person. Then she gets another nurse to come and verify all of the same information.

One of the most dangerous aspects of chemotherapy is accidentally delivering the wrong dose or wrong drug. There have been cases of patients severely injured or killed by, for example, getting their intended five daily doses all as one dose. So they try to be very careful.

After the chemo it's at least one more liter of saline. Then the next day I go back for two more liters of saline. They need to dilute the cisplatin because it is very kidney toxic.

I felt decent when I got home. I even fixed the screen door from which the closing mechanism had come loose. But I started feeling a little funky as the evening wore on.

Time to go to bed but I'll write more about the chemo aftermath tomorrow.

Wednesday, July 10, 2013

Routes of Administration

In "The Dude Abides!" I mentioned that I'll need to find alternate ways to use medical marijuana because my mouth is likely soon not going to tolerate smoke.

Wonderful Wife's very helpful parents sent me a link explaining how to make my own pot suppositories!

That sounds workable, but it seems like it might be difficult to get the dose right.

Another friend told me that someone we know who had breast cancer used a "vaporizer". A vaporizer heats the pot enough to vaporize the active ingredients but not hot enough for combustion, thus avoiding all of the harmful effects of smoke.

I'm investigating.


I feel like most of the humor in this supposedly sarcastic blog has occurred in the titles. Well, the other day I missed an excellent opportunity which I will now remedy.

The post formerly titled "Dude!" is hereby rechristened "The Dude Abides!"

And also a correction...

In yesterday's "Jinx!" post I stated that Monday was the first time I had hurled at home. That is a blatant lie. I realized in the middle of the night last night that on July 4 I sent the following to some friends via email:

I had to work hard to force down those 350 calories. I'm pissed that I puked them back up.

We regret the errors.

Tuesday, July 9, 2013


Yesterday I wrote about my wonderful discovery of the palliative effects of herbal treatment.

Immediately after I published that post I had a very strong wave of nausea. I tried a tablet of Adavan under the tongue, which is used as a quick nausea remedy. It worked. Although that's more of a challenge because I have no saliva to dissolve the tablet. I kept taking tiny sips of water to wet the tablet.

Then an hour later it happened again. This time it was too late for the Adavan.

I hurled.

That's the first time that's happened at home so far. Probably won't be the last.

I suspect it was self-inflicted via:

  • Staring at a computer screen too long.
  • Not eating for too long - way too long.

I'll try to avoid those mistakes in the future.

I let my stomach settle for a bit and then slowly ate a bowl of Cream of Wheat with success.

The slow part goes without saying. I eat everything very slowly these days.

Monday, July 8, 2013

The Cavalry Has Arrived

Big Sister (remember she works in cancer care) told us from the get go that we should not try to get through my treatment on our own. We would need help, or Wonderful Wife would get way too stressed out trying to both care for me full time (as I get sicker) and run the household and mother the kids, etc.

We agreed.

Our families have worked out a schedule so that one or more family members will be with us from today through to a couple of weeks after treatment ends.

Phase 1 began this morning with the arrival of Big Sister. She's going to stay a couple of weeks, then Little Sister will come, then Los Parentes and finally Wonderful Wife's Wonderful Parents (they're going to need a pseudonym).

It's great to have Big Sister here. A side benefit is that The Progeny never get enough time with their aunts and this will give them plenty of it.

So it's been a doubly good day: discovery of a new medicinal tool plus help and good company.

The Dude Abides!

If you've been reading along you know that my morale has not been attaining any new heights recently. I've had kind of a grim attitude. Just suck it up and get through it.

Two weeks ago when I was awake in the middle of the night with serious stomach discomfort I decided that a little medical marijuana might be called for. Well, by that I mean I would have killed for some.

Marijuana for medical purposes was recently legalized in Massachusetts. However, the Health Department has not yet finalized the rules regarding dispensaries so there is no place to legally buy it yet.

I put out some feelers and the grapevine worked its thing and a couple days later I received the gift of a single large joint for testing purposes.

It so happened that it was the evening on which I had a rapid bloom of painful thrush - a yeast infection in the mouth. My mouth went from fine to feeling scalded in about two hours. I tried a little of the weed that night but the smoke was very painful on my mouth.

Mission aborted.

It took a while for the thrush to clear and then I was distracted with other things like surgery. I sort of forgot about the weed until today. I've been in such a funk that as soon as I remembered I had it I decided to give it a proper try.

In case you're not in the know about pot, its cultivation has been highly optimized over the past couple of decades and the pot of today is orders of magnitude more potent than that of the 60s and 70s. I didn't want to over do it. I took a couple of medium tokes.

A few minutes later I was feeling quite good. I wasn't doing it for the high (remember my earlier comments about preferring my consciousness unaltered these days?) but I have to admit the high during the first hour or so was fun.

But the most dramatic effect was on my mood. Like night and day. I suddenly felt calm and optimistic and not stressed. It's been a while since I haven't felt stressed. It's a huge relief.

It also removed the constant stomach discomfort that has been present seemingly forever. More relief.

Since pot is known to increase appetite (i.e. "the munchies") I wondered if it would change my food experience at all. It did! It didn't make things magically taste normal, but it did turn down the "bad" taste significantly, or at least make me not care about it as much. I've eaten more solid food today then on any of the past several days. That's still not much, mind you, but enough that my stomach has felt satisfied.

I actually enjoyed the trip into Boston for my daily radiation appointment. I was so happy to be feeling better that I probably seemed weirdly bouncy to the radiation techs.

It's eight hours later as I write this and I'm still feeling so much better than I have been the past few days. The dude abides very well presently.

The only drawback is that my mouth is going to get worse and worse from this point on, and smoke is a major irritant of a sore mouth. So I need to find a different route of administration. I'm researching. Apparently there are a wide variety of products available in other locations. Specifically Washington State, which recently legalized marijuana even for recreational use. I've heard of lozenges. I need to figure out how to obtain some non-smoked forms of this miracle drug.

Marking Time

My complete treatment regimen spans 52 days - from first chemotherapy on June 18 to last radiation on August 8.

Today is Day 21.

At the end of this week I'll be halfway there.

Unfortunately it's the worst half still to come :)

Sunday, July 7, 2013

The Cabinet of Doctor Chemogari

What would Nancy Reagan say? A whole cabinet full of drugs.

None of these are cancer treatments, mind you. They are all to help me cope with the cancer treatment.

I'm coping slightly less well today. Just can't get my stomach comfortable.

Food is really a challenge. There are only a few things that are tolerable to eat. I got down a bowl of Cream of Wheat this morning. Last night I managed a plate of butter-soaked scrambled eggs. I can eat a bowl of granola but it's starting to hurt my mouth (first mouth sore appeared last night - many more to come). Wonderful Wife has been making smoothies that I can get down pretty easily because they are wet and cold. I supplement with Ensure.

I would love to just fill my stomach with something resembling a normal meal but trying to eat that much at one time is just too revolting.

What's revolting about it? The combination of several factors:

  • Very little saliva production (from radiation)
  • A persistent distasteful coating in my mouth, which is dead cells killed by radiation
  • My sense of taste is 90% suppressed and also altered for the worse (from the chemotherapy)

So when I put a bit of food in my mouth, I get a brief second of a hint of flavor before that flavor turns bad. Then if the food is not quite moist it becomes a tasteless thick mass that I have to chew. Then I have to take a mouthful of water, mix it with the food and take a big gulp to get some of it down. Rinse and repeat.

Even with the well-lubed buttery eggs there's enough moistness but the natural impulse to swallow after chewing for a while just isn't there. I have to wash it down.

At least all that washing food down helps me get my fluids.

Treatment ends one month from tomorrow.

I am scared that my second chemo infusion on Tuesday is going to crank everything up a notch.

Saturday, July 6, 2013

Slow Motion Brazilian

I was told that hair loss might begin in the third week of treatment. Not everyone experiences hair loss, but it looks like I will.

This morning I noticed short beard hairs littering my keyboard. I pulled on my beard and multiple hairs came out without resistance.

So far it isn't as advanced on my scalp. I can get a couple of hairs at a time but not clumps like my beard (which, by the way, had already turned significantly grayer since treatment began).

I shaved my head back in 1999 as half stunt, half prep for an exotic trip I was embarking on. Many people commented that I have a nicely shaped head!

Regardless, once it starts to fall out on my scalp Wonderful Wife is looking forward to shaving it.

Can't Help But Teach

For the past several years I have volunteered as a mentor for the high school robotics team in my town. I'm always trying to find examples of engineering and robotics-related careers to describe to the students to see if something sparks their interest. As I lay in the radiation treatment machine the other day it occurred to me that designing machines like that one would be cool and rewarding. I sent the following message to the team.

There's some repetition here from previous posts, but told a little differently.

The Engineers Who Are Saving My Life

Hi iRaiders Students,

A couple of months ago I was diagnosed with tongue cancer. It turns out the kind I have has a a very high cure rate so I'm confident that I'm going to be fine. Just some unpleasant treatment to go through to get there. Please don't worry. My family and I are being well taken care of by neighbors and family and I'm receiving excellent care at the Dana Farber Cancer Institute, one of the five best cancer centers in the country.

Part of my treatment is IMRT: Intensity-modulated Radiotherapy (commonly just called "radiation"). I will received a total of 35 radiation treatments. As I've watched the machine deliver the first few treatments, I thought it would be a great way to show students an example of how robotics and engineering skills can put you in a career where the products you design and build have a direct impact on people's lives.

First a little bit of biology. You probably know that every cell in your body contains your DNA. For cells to divide, they need to synthesize new DNA for the new copy (one cell is becoming two - each needs its own complete copy of your DNA). We all accumulate mutations in our DNA via several processes. Some mutations come from natural errors during replication. Other damage can come from chemicals in your diet or environment (e.g. cigarette smoke) and yet other damage can come from external sources like UV light from the sun. Cells can deal with a certain amount of DNA damage. For most types of simple damage, the cell has mechanisms that can repair the damage directly. If a cell accumulates too much damage to repair, then the cell will normally kill itself via a process called apoptosis.

Cancer is really a disease of the DNA. If the natural random mutations in a particular cell happen to occur within specific genes, the cell can become a cancer cell. The primary characteristic of cancer cells is that they grow and divide very quickly. That means even with a normal mutation rate of N mutations per cell division cancer cells accumulate more mutations at an accelerating rate. Some cancer cells also manage to turn off the "cell suicide" mechanism that would normally cause them to kill themselves when their DNA becomes so damaged.

Cancer treatments, both chemotherapy and radiation, work by inducing even more DNA damage. Chemotherapy induces DNA damage in all rapidly dividing cells, both normal and cancer. In my treatment, chemotherapy serves as a primer for radiation. Radiation, which is focused right on the tumor, amplifies the DNA damage inflicted by the chemotherapy. The cancer cells are overwhelmed by this double hit of DNA damage and they finally do kill themselves. It turns out normal cells can repair their radiation-induced DNA damage in about 6 hours but cancer cells cannot. That's why radiation is delivered every day for weeks (5 days per week for 7 weeks in my case). You keep kicking those cancer cells while they're down and eventually you kill all of them.

OK, enough of the biology, let's get to the technology.

I mentioned above that the radiation is focused on the tumor. That's important because doctors don't want to deliver radiation to healthy tissues that are adjacent to the tumor. That will damage those tissues, and in fact could lead to a future cancer. So engineers have developed ingenious ways to deliver radiation just to the desired areas.

The first step is to obtain calibration CT scans of the patient. This is a normal CT scan, but it is taken with the patient's body in a known position. The general classification for my type of cancer is "head and neck" (there are specialists in "head and neck cancer".) For a head and neck patient, they make a thermoplastic mask by pressing pliant plastic down over my head and shoulders and molding it to my anatomy. Once cured, this mask fastens to a plate that lies under my head and shoulders. When fastened, I cannot move my head. This helps ensure that the radiation is delivered to the same position in my body during every one of those 35 treatments.

Once they have made the mask and taken a CT scan of me in it, the doctors can perform "radiation planning". The first step is to do some CAD-like work. A CT scan is like a stack of x-rays that are slices through the patient. Think of my neck and head as a stack of plates where each plate is an x-ray image of the part of my head the plate passes through. The doctors can use a digital pen to draw outlines of anatomical structures on each layer of the image (each plate). In my case they outlined the tumor, the nearby lymph nodes, the esophagus, carotid arteries, important nerves, my spine, my jaws and teeth, etc. Once you have those outlines in each layer, you can connect the outlines to create 3D volumes that represent those structures. Now you have what looks like a 3D CAD drawing of the inside of my head and neck. Here is an example of what that might look like:

Now the doctors (called Radiation Oncologists - cancer doctors who treat with radiation) perform the real planning. They design a series of x-ray beam angles and shapes to "paint" the tumor with high radiation doses while delivering very low doses to healthy tissues very nearby. They use special software to design a treatment program, and it includes a simulator that will compute the dose delivered to any given area. They can tweak the plan until the have exactly the dose delivery pattern they want.

This is where the technology comes in that is similar to robotics. The Radiation Oncologists have to design the treatment program within the contraints of the machines that will deliver the radiation. Those machines provide several clever ways to shape the x-ray beam. There are interchangeable lenses that shape the beam as a cone, cylinder, etc. But the coolest part is called the collimator. Here's a brief video of a collimator in action:

In the video the radiation is passing through the hole. Notice how the shape of the hole can be infinitely customized. In fact, in real treatment, the hole "moves" across the beam and changes shape as it does so. By watching the collimator, I can see the shape of the target area in my neck.

Here's a picture of the machine I am being treated on, a Novalis Tx:

The linear accelerator that produces the x-rays is in the top part. The yellow ring holds the focusing lenses and the collimator (which is visible through the glass window). As you can see, the entire machine rotates on a horizontal axis. The yellow head also rotates so that the collimator can be oriented differently to the beam. And finally the patient table can rotate and tilt to customize the patient position.

Once the treatment planning is done at the beginning of treatment, the actual treatment delivery is completely automatic. When I go in for daily treatment, the technicians position me with my mask. The machine then takes a normal x-ray which is used to make sure my position is aligned with the reference position used for planning. Then the treatment program is started by the technicians and it runs through all of the positions automatically. I keep losing count, but my program has about 15 different positions and exposures. It lasts about 15 minutes.

So why did I write this long message to you? If you are interested in engineering, this is a type of work you could do. It was engineers who designed that machine. One set of engineers designed the overall chassis and the big rotational system. Another group designed the x-ray source and path. And yet another group designed the focusing and beam-shaping system. All of them had to work within very exact tolerances and with some extremely stringent safety constraints - the last thing you want this machine to do is deliver too much radiation to a patient, or to the wrong location.

I work for a company that makes medicines. I can speak from experience that working for a company that has a direct impact on peoples' health provides an extra measure of motivation and reward. The engineers who designed this machine can take pride in the fact that their work is literally saving my life.

A similar machine is made by Varian, the company Mr. Holden works for.

P.S. If you have the patience to listen to the narrator speak very slowly for 5 minutes, this video (about the Varian machine) is even more informative about how IMRT works.

Seek Alternate Routes

In our last installment I was waiting to go into surgery to have my feeding tube installed.

That went reasonably well. It seemed to take me a long time to recover from the anesthetic. I went through three different recovery rooms. The first was a PACU (Post-Anesthesia Care Unit) like when I had the biopsy. I don't even remember that room this time. Then a more relaxed room. But that room is part of Day Surgery and closes at 8:00 so they moved me to the "general recovery room" which is open 24/7. I was pretty groggy through all of it.

The ride home was much better than after the biopsy. No carsickness. I was still groggy through that part, too.

I had gone to the hospital in shorts because it's freaking hot here in Boston. But I was a little chilled when I dressed to go home. The nurse gave me a pair of scrub pants and also a hospital blanket for the ride home. Maybe I'll get a bill for $500 for each :)

I'm usually good at anticipating things like what I might feel like after a procedure. But this time I was distracted by other things and hadn't given it any thought. I was quite surprised by how much abdominal muscle pain I had that night and the following day. It felt like someone had just punched a hole through to my stomach!

Fortunately I had painkillers. And Wonderful Wife as usual took great care of me. She arranged pillows to create a recliner-like position in the bed in which I slept quite comfortably.

So, now I have a 12" long plastic tube protruding from my stomach. Yippee!

Actually, I am excited to have it because eating is really a struggle. Most foods are quite disgusting to eat now.

That is the hardest part for me so far. Especially knowing that it's going to be like this for at least a couple of months. I'm fairly depressed about it at the moment.

My treatment team ceaselessly stresses to me that I have to continue to eat through my mouth as much as I can so my swallowing muscles don't atrophy. I wonder if I can get some hypnosis therapy to convince my mind that the revolting glop in my mouth actually tastes good. Or at least not bad.

But enough of that. Let's talk medical procedures!

Before the surgery they described to me the fascinating way they install the PEG.

First they insert an endoscope down my throat. Then they turn on a light at the end of the scope and locate a suitable location for the tube placement by viewing the light through the skin. Once they identify the site they make a small incision. They then attach a wire to the endoscope and withdraw the endoscope back out of my mouth pulling the wire along with it. Finally, they attach the wire to the feeding tube and pull it back down through my mouth and stomach and back out the incision. At the end of the feeding tube is a retention bumper. They pull the tube out until that bumper is against the stomach lining. Then they put a clip on the outside against the skin of my abdomen to hold the tube tightly in place in the hole while it heals.

The weird thing is there are no "seals" anywhere! I guess the stomach wall (which is muscle) and the abdominal wall (which is muscle) have enough compression to squeeze against the tube and provide a seal.

Here's what the end result looks like.

Well, not really. I thought some people might be squeamish. Click on the image to see what my PEG tube really looks like.

To feed, I open the cap and stick a big syringe on the end of the tube. First put some water in the syringe and then release the clamp to let the water rinse out the tube. Then start pouring food into the syringe. I was warned to control the flow by holding the syringe at different heights. Letting the whole thing empty into my stomach in seconds would be just as uncomfortable as gulping it down too quickly. So it takes about 15 minutes to get in a container of food.

For now I've used it a couple of times with Ensure Plus. The nutritionist is ordering a month's worth of a product called IsoSource 1.5. Wow, $60 per meal! I'm going to be eating well!

Big Sister and her colleague encouraged us to ask for different kind of feeding tube called a Mic-key button. We tried, but the folks at Brigham and Womens' Hospital who place the tubes are stuck in their ways. Wonderful wife and I ran out of emotional energy and time to fight that battle. The tube needed to be placed before the second round of chemo next week.

Here's a picture of a Mic-key. At a glance you can tell it would be a lot more comfortable and convenient, since there is no tube attached to it when you aren't feeding.

C'est la Vie.

At least I have a tube, and it will be quite helpful.

Wednesday, July 3, 2013


If you are reading this blog on a small screen you may be missing some bonus features that only appear if you view the non-mobile version of the site.

There is a widget via which you can subscribe to the blog by email. Instead of remembering to visit the site to check for new posts, each new post will be delivered to your inbox.

There is a link to the Puncture Count page. I thought it would be interesting to keep track of how many times my body is punctured during this process.

Finally, there is a link to the Medical Costs page, which tracks every bill I receive including what the provider tried to charge, what my insurance company allows, what insurance paid, and what I owe.

Bills so far? Almost $60,000. I owe $2,500.

Thank goodness for insurance.

Tuesday, July 2, 2013

A Person of Low Taste

By far the worst side effect of the chemotherapy is the loss of taste.

Mine is almost completely gone. I get hints of flavor around the edges of things, but it is subdued and altered and "not right". Some things actually taste bad. Or some things, like white chocolate, have no taste and their consistency is disgusting without the flavor.

And loss of taste from chemo is combined with extremely dry mouth from radiation - a excellent combination.

On Saturday I tried to eat pancakes. Even drenched in syrup I had the sensation that the pancakes had been covered with powdered chalk before being put in my mouth.

For the most part the taste change is neutral - it's either gone or turned way down. But some things actually taste horrible. Like mango Snapple.

This is the challenge of a mouth cancer patient. One must keep fed, but one has no appetite because everything tastes like crap. Eating becomes a chore with no enjoyment whatsoever and even some disgust.

Given that, I am very happy to get my feeding tube today. This is probably not what the nutritionist we meet with tomorrow will advise, but I figure I can use the tube to get the bulk of my calories and only use my mouth for foods that taste good.

I did make a great discovery last night: vanilla ice cream still tastes good. Hopefully at least that one thing can continue to be enjoyable.

Catch Me If You Can

I want this blog to be current, but it's hard to keep up sometimes when family events or not feeling well steal my writing time. At the moment I'm a week behind in real time. So in this blog I'll stick to the narrative and get you caught up.


Tuesday night I was still feeling pretty uncomfortable due to stomach issues, but I took a double dose of Prilosec knowing that should help within 24 hours. I also started taking a 10-day course of the anti-biotic Bactrim for my sinus infection. Sleep was interrupted that night due to stomach acid.


By Wednesday afternoon the prilosec was working and my stomach was much better. I still had a little splash of reflux when I swallowed fluids but that was also improving. And we also discovered that it was important not to let my stomach get empty. If I always kept some food in my stomach I felt pretty good.

Cool. Strategies that work.


Thursday was a good day. I felt normal all day. My radiation appointment was late in the afternoon. Afterward we met with Dr. Rad. I described a sore throat and she said that should not be caused by the radiation yet. She mentioned the risk of thrush (a yeast infection in the mouth) that usually happens later in treatment. Antibiotics make one more susceptible. She looked for it but didn't see much.

She also wrote me a prescription for Ativan (lorazepam) that is used for anxiety and also for nausea. They thought it might "take the edge off" and maybe even help me sleep better. And I can apparently use it under the tongue for rapid nausea relief.

At this point, about 5pm, I was feeling better than I had in week and a half.

While we were at our appointments The Progeny were being cared for by lovely friends Dan and Marie and their similarly-aged and identically-gendered progeny. When Wonderful Wife and I were finished we drove to their house (a few blocks from ours).

It was a pleasant visit until I went to take a bite of watermelon. Suddenly it was painful just to open my mouth wide. It felt like the entire roof of my mouth had been scalded.

Hmm. Setback.

I nibbled at dinner and got in some food. I even ate some greens, which have't been very appetizing lately.

My mouth got worse as the evening wore on. And I get very discouraged and angry. I had had about 8 hours of feeling relatively normal and now yet another problem had cropped up.


We called the Dana Farber nurse on call and she confirmed that what I was feeling was likely thrush. Great.

The next day we picked up pills for that.


Friday was a decent day. Although it reveled yet another side effect: constipation. They had warned us and told us to have supplies on hand, so I started popping Senekot and Colace.

My little pile of pill bottles is getting not so little.

My radiation appointment was at 4:20 on Friday afternoon. I don't remember this in is other cities, but in Boston in the summer Friday afternoon means major exodus. That's for the second wave - lots of people don't go to work at all on Friday much of the summer. So we got to enjoy traffic both directions. Oh well, only one afternoon appointment left and we shift to 11am every day.

When we got home The Burtnetts were having a feeding frenzy and invited us to join. I ate some yummy lentil stew and a Brazilian rice with peas and corn. Some of it actually tasted good.


Saturday I was feeling even better. The senekot kicked in and resolved that particular problem.

We puttered around the house with some cleaning projects. Then we took The Progeny swimming at the nearby free state pool, which had just opened. That will be my last time swimming for a few months due to my feeding tube.


Sunday I also felt great. I tried to get the desk and bills organized (they've been neglected a lot lately). Carol slept. Then we took The Progeny to see "Monsters University." That was fun.

After the movie we went out to dinner. It feels like we haven't done that in ages. It was enjoyable, but the food tasted like crap. See next post.


Monday I felt so good I actually went to the office for a few hours. I had lunch with a couple of coworkers and I also made some progress cleaning out my Inbox. Felt good to be there. Then Wonderful Wife dropped by to fetch me for radiation.


Today we have appointments all day. We started at Dana Farber for IV and blood draw. Then we met with Dr. Chemo and Nurse Holly. We told them the stomach acid problem is resolved. They looked at my blood chemistry and determined that I didn't need infusion of fluids today if I didn't want them.

Now we're waiting in Day Surgery at Brigham and Womens Hospital to have my feeding tube put in. It requires general anesthetic so we'll be here for a while. Hopefully I won't feel as poorly after this than after the biopsy.

So that's where we're at. A rough start to the week and then steady improvement ever since.

I'll let you know soon enough how the feeding tube placement went.

A Horizontal Interlude

The place where they give chemotherapy is called an infusion room. It contains a bunch of "infusion chairs" (like institutional recliners) and a few regular hospital beds. There are the usual hospital curtains between them.

I had been sent to a chair on my first two visits, but this Tuesday I was assigned a bed. Wonderful Wife was ecstatic, because she was tired and wanted to steal half my bed.

We got settled in with the IV and now knew we would be there for at least two hours. Wonderful Wife climbed in behind me and spooned me. This was during Boston heat wave, so we hadn't been able to sleep close to each other at night. But this was in a pleasantly air conditioned hospital. Very soothing.

I fell sleep.

We probably both woud have slept the entire time, but a new neighbor arrived on the other side of the curtain. A middle aged man and his wife. He was very gregarious and funny and they were both obviously intelligent. We eavesdropped as they interacted with the various staff that were explaining to him how his first chemo infusion was going to go.

We thought they sounded like a "cute couple".

We even heard them discuss that their wedding anniversary had occurred a few days prior and he had forgotten. They were able to laugh about it.

Anyway, instead of sleeping we lay there all afternoon listening to their stories and their conversations with various people: a hand masseuse, a very informative nurse practitioner, etc. It was very entertaining.

The whole time I felt like we should open the curtain and introduce ourselves but the time never felt quite right. When my infusion was finished we walked to the open side of their section and said hello. We had a nice little chat until Wonderful Wife and I had to leave to go to my radiation appointment.

He appears to be on a similar schedule to me so I expect we'll run into each other again in the infusion room.

A little googling told me that the wife is fairly well known. So I'll avoid descriptions of them that might violate their privacy.