Saturday, June 29, 2013

Our Village

Four years ago Wonderful Wife, The Progeny and I packed up and moved 3000 miles to follow my job from Seattle to Boston. It was a very difficult decision to make given that all of our family is there, but I really liked my job and the economy was crashing so it seemed prudent. We came east with the plan that in 3-5 years we would find a way to get back to Seattle.

Totally by chance, we landed in this enchanting little town called Melrose. It's about 10 miles north of Boston. I refer to it as Mayberry because it is really is that neighborly and peaceful. We landed next to a family with three kids slightly older than ours and became instant friends. Very quickly we met a whole bunch of other families with kids in the neighborhood, and also old-timers like our neighbors across the street who have lived in this neighborhood for 50 years. We felt immediately welcome and became woven into the neighborhood fabric very quickly.

I hate to say these words in a place where our families will read them, but Wonderful Wife and I can't really envision what would ever make us leave.

There are other aspects of New England that we love: swimming in a warm ocean; being surrounded by historic places; the landscape; the traditions; even the climate!

But this post is about the people.

My sisters and parents and Wonderful Wife's parents will all visit sequentially starting in a week to provide support and child care through the summer. Wonderful Wife will become more focused on me and family support will allow her to not worry about the kids or making dinner, etc. We're looking forward to their help.

But we had two weeks to cover before family starts to arrive. Wonderful Wife composed an email to neighbors and to moms of the The Progenys' closest classmates asking for a little bit of help on certain days.

The response was overwhelming. Literally.

The girls have had lots of play dates at friends' homes. They've had a couple of days of all-day summer camp. And friends have taken them on outings to fun places. Plus other friends and neighbors have brought us some delicious dinners. Two of our more tech-savvy neighbors created an online calendar to track times we needed coverage and volunteers signed themselves up for the slots.

The first week went very well with all that great support.

All this instant and unquestioning help has made us love Melrose even more than we already did.

Thank you!

Let's Not Do That Again, Eh?

On Tuesday I was scheduled for an appointment with one of the Nurse Practitioners in the Head and Neck Center and then my weekly infusion of IV fluids.

One's first stop for the day is usually Lab Services where a phlebotomist installs an IV for the day if you don't have a port. I don't have a port because I will have relatively few chemo infusions. I only get 3. Some people get 8 or more.

If you've been following along you know I was having some struggles, especially with my stomach. One problem was that whenever I took a swallow of liquid I would experience a burning splash of stomach acid into my esophagus. That made it difficult to drink as much fluids as I should have but I hoped I was drinking an adequate amount.

Since my stomach is giving much such trouble, car trips are not much fun. We travel the 12 miles from home to Dana Farber every weekday for radiation treatment. As a new patient I have late afternoon radiation appointment times that always involve stop and go traffic. Next week I move to 11:00am for the rest of treatment so it should remove a fair bit of traffic from the equation.

Anyway, with stomach trouble and long stop and go car trips I don't arrive at my destination in the best mental condition. On this morning, I discovered just how bad was feeling when the receptionist who checked me in showed just a little extra compassion and I almost burst into tears.

When it came time to get that IV Tuesday morning I discovered that I had been pretty severely under-hydrating. The first phlebotomist had two very painful misses in my arm. I usually have great veins and no problem getting needles or IVs into them. These hurt like hell.

I cried.

She called for backup.

Phlebotomist Number Two arrived and took me to a different room. Way in the back.

Where no one could hear me scream.

But she was good. She examined my arms and hands very carefully to find the best spot. When she put the third IV in the back of my right hand it was perfect - almost painless like it should be. I wanted to give her a hug.

Not a good start to the day.

The next appointment was with a Nurse Practitioner on my team, NP Kate. We hadn't met her yet. After introductions she asked, "So, what's going on with you?"

I told her I had several issues but felt like I couldn't really whine in my first week. She assured me that every patient whines.

Wonderful Wife and I had brought a list. Serious stomach discomfort was top of the list. Not quite nausea. Sometimes outright pain. Always "uncomfortable". And that painful reflux when drinking.

NP Kate said right away that the Decadron and the Cisplatin can both cause excess stomach acid. That's easy to fix: take Prilosec every day.

The other main "complaint" was the unpleasantness of the side effects of the anti-nausea drugs. They can try to fix that, too. In the first round of chemo they make sure to give you enough to counter any nausea. But in the next chemo round they will reduce the dosages of some of the drugs and see they can't make it more comfortable.

With a few day's perspective, I realize that I could tolerate the same experience again in the second round. I just can't have expectations that I'll be functional.

For me the hardest part of this first week is I have not been able to use my eyes. During the drug side effects I had changes to my vision that made it uncomfortable to focus on text either on a page or a screen. Then during the stomach acid few days trying to focus on visual things made me queasy. Thus the dearth of blog posts - I haven't been able look at a computer screen long enough to write one. I haven't even been interested in watching TV or movies because that kind of visual focus also made me feel bad.

I spent a lot of time laying on my back in dark rooms starting at the ceiling.

Anyway, I was much happier after our meeting with NP Kate and Dr. Chemo. We had strategies to address the problems. And they clearly care about making me as comfortable as they can.

Then it was off to get that much needed infusion of fluids.

The next time I need to get an IV is Tuesday. I am determined to be super hydrated.

Wednesday, June 26, 2013

Pappy, We Hardly Knew Ye!

Monday morning I had an appointment with Doctor B, the ENT who did the biopsy back on May 21. This was a routine 1-month follow-up.

Finding number one? I clearly have a sinus infection. We have to take care of that pronto because the chemo is about to start compromising my immune system and it will become harder and harder for me to fight any infection. Even a fever of 100.5F at this point means I should call the oncologist immediately. So Doctor B prescribed an antibiotic for that. Bactrim, which is supposed to be very well tolerated and not cause stomach upset. We'll see.

When he got to my throat Doctor B used the same special technique he had used before to see the base of my tongue. He has me lean forward. He grabs my tongue with some gauze and has me open wide and pant slightly. Then he very carefully uses a dental mirror to look down my throat without touching anything. He's good at it!

He said Pappy the Papilloma is already essentially gone! He told us that in some cases this condition really does respond dramatically within just a few days of the first chemo round. Amazing! I repeated that to the Nurse Practitioner and Doctor Chemo at Dana Farber yesterday and they confirmed that it happens.

It doesn't mean anything about the duration of treatment, but I still find it amazing that it could respond that quickly. It made me envision the tumor as sort of a cellular foam that is dividing very quickly. Starve it of raw materials to make new DNA and it stops "frothing" and the existing cells die and viola, gone. I doubt that's a valid biological description but it seems like the process must be something like that for the thing to go from walnut-sized to nothing in a few days.

Doctor B also mentioned that such a occurrence is very prognostically positive. He was clearly excited.

Meanwhile, there's Lumpy the Lymph Node. The radiation oncology nurse told us last week that radiation would "make it angry" and it would get bigger before getting smaller. It has. The size has only increased a little, but the hardness is much increased. The globus sensation in my throat is gone (due to the disappearance of Pappy), but when I swallow I can now feel the hardness of Lumpy next to my throat.

Let us have a moment of silence for our dearly departed Pappy.

24 Heures du Normal

Sheesh, more dark time on the blog. Sorry about that.

In case you're not an auto racing aficionado, the title is a play on the "24 Heures du Mans" which is a famous auto race, the most recent installment of which took place this past weekend. It corresponded with 24 hours in which I felt vaguely normal.

As I wrote last week, I found the side effects of the anti-nausea drugs to be quite unpleasant. I spent a fair bit of time intentionally altering my consciousness a few decades ago but these days I prefer it completely unmodified. I rarely even wear earphones while out and about because I prefer to have my senses engaged with the world around me. Those drugs had some serious mind-altering properties.

At my first chemo a week ago I was given a schedule for taking the drugs. I had been warned by Big Sister and my doctors that it is well worth following the schedule - that once nausea sets in it can be very hard to get it under control. So I followed my schedule precisely.

That schedule ended Sunday night, after which there was just one drug (Zofran) to take in case nausea did appear. I was really looking forward to a no-pill day on Monday.

Sunday night I started feeling much better. I even mowed the lawn. We've been having a heat wave with several days above 90F and humidity, but it cooled off into the low 80s and there was a nice breeze and it felt good to do something useful. I was hot afterward but still felt "good".

Monday morning I still felt pretty good. I actually logged in and did some work. It was nice to not be taking any drugs.

But by Monday night I was having some bothersome stomach discomfort. It was hard to drink as much fluid as I knew I needed because every swallow of fluid would produce a painful splash of stomach acid into my esophagus. At one point we were at the mall to be someplace cool and I made the mistake of drinking some fizzy root beer. I thought the heartburn (which I've never suffered from) was going to kill me. Very painful. Fortunately it lessened after a few minutes.

Then I was uncomfortable all Monday night. The discomfort is low enough that I can get to sleep when really tired, but when I awake in the middle of the night and it is enough to prevent me going back to sleep.

I'm pretty sure I haven't had a full night sleep since this story began on May 10.

I'll catch up in chronological order. We think we've figured out the stomach pain issue and I'll fill you in when we get there.

Friday, June 21, 2013

Zippity Zap

Back on June 6 I had a radiation treatment planning session where they made the mask that holds my head and shoulders still, and also took CT scans from which Dr. Rad and colleagues could precisely outline the tumors and plan the radiation doses and locations. The CT data is registered with the mask so they know at each treatment the radiation will be delivered exactly where they want it.

Wednesday this week I had a radiation treatment dry run. The planning session was performed at the Brigham and Womens Hospital across the street in a normal CT machine. The dry run was performed at Dana Farber in the actual machine that will deliver my treatments. Dana Farber has three Intensity-modulated Radiotherapy machines. They have colors for names. All of my treatments will be delivered by the Green machine. Each machine has a dedicated technician crew (a crew of three) and they become familiar with each patient's plan. That helps prevent errors.

During the dry run they took more X-ray images to confirm the mask/machine alignment, then they ran through the treatment program without emitting radiation to get visual confirmation that the sequence was properly programmed.

This type of therapy involves radiating the tumors from multiple directions in order to reach all areas of it. The multiple angles also allow the radiation to avoid nearby anatomical structures that should not be irradiated if possible - they don't want to cause damage to normal tissues if at all avoidable. That entire structure you see in the photo rotates 360 degrees. And the table also moves to put me at different angles to the beam. During my treatment the machine and I are sequentially moved to multiple different positions. Then I basically get an X-ray at each position, but unlike a diagnostic X-rays these are focused and also significantly longer exposure (the buzzing goes on longer).

The green lines in the photo are alignment guides that the technicians line up with marks on the mask.

The red tube under my knees is just for comfort. As is the blue ring I'm hanging onto - so my arms don't flop down beside the table.

Apparently most people find the mask pretty claustrophobic but I don't mind it. I find it kind of comforting. Wonderful Wife says perhaps it's like swaddling to a baby. When I told the technician I could almost fall asleep in it, they said that was the first time they'd ever heard that.

I may ask for one minor adjustment - the mask has shrunk a little and yesterday I could not even open my eyes.

Yesterday was my first real treatment. I met with Dr. Rad beforehand and she and Nurse Susan set my expectations. They said I shouldn't notice much effect from the radiation treatment for perhaps the first two weeks with the exception of maybe some mouth dryness. They of course have mitigating strategies for that: a homemade rinse containing salt and baking soda in water is the first thing I'll use. My mouth will start to slough off dead cells and the rinse will help both keep my mouth clean and also rinse out that debris.

Only 34 more radiation treatments to go. Monday through Friday until August 8th. I get July 4th off.

Backflow Prevention

Cisplatin, the chemotherapy treatment I'm on, causes severe nausea and vomiting. Fortunately, another advance in cancer treatment in the past decade has been the development of very effective anti-emetics: drugs that prevent nausea and vomiting. I am on several of them and they are working quite well although not without side effects of their own.

Before the cisplatin infusion I was infused with Emend, which happens to be made by my employer. That is supposed to give me three days of nausea prevention right there.

I also took 12mg of Decadron (dexamethasone), a powerful steroid. This drug augments the effectiveness of anti-emetics. Interestingly, it is also used directly as a chemotherapy agent in certain blood cancers.

I was sent home with three prescriptions:

  • More Decadron to take twice a day for three days.
  • Reglan (metoclopramide) to take four times a day for 5 days.
  • Zofran (ondansetron) to take as needed for nausea starting on day four after chemo.

These drugs are working very well for preventing nausea and vomiting. I have had only small twinges of nausea. It's very counterintuitive, but I've learned that what helps when I feel those twinges is to eat something.

The side effects are a little strange, though. The Decadron makes me very jittery and either it or the Reglan makes me a bit loopy. I've never drunk a Red Bull and vodka, but this is what I imagine that must make you feel like. It's not very pleasant. But of course vastly preferable to the alternative of not having these drugs available and praying to the porcelain goddess.

The jitters make it difficult to concentrate on anything. I've barely checked work email this week. And it's the main reason I haven't written all week. I'm a little more used to it today. Today is the last day of the Decadron for this cycle so I'm looking forward to a non-jittery day tomorrow.

If you notice poor editing in these posts that lack of ability to concentrate is why.

Let's Get This Party Started!

Sorry for the quiet period. I'm not doing as poorly as you might assume from my lack of posts.

I kept trying to get a particular post written over the weekend but it requires a lot of research and still isn't done. And I was busy both days working in the yard and getting The Progeny outdoors to a couple of cool new places.

So I'll catch on up current events instead.

Monday I went to work and had a pretty productive day. I got my projects documented well enough that my peers know the status, next steps and who to talk to about each one to keep them moving forward. That felt good. Now I can relax and just monitor work, mostly from home. I'll go in when I feel good. Not sure how often that will be.

Tuesday was my first chemo infusion. Wonderful Wife and I spent all day at Dana Farber.

The day started with a visit to the lab to get an IV inserted. That went well. I don't have much a problem with needles. I'm a long time regular blood donor so I'm used to being stuck.

The we met with Dr. Chemo for an hour. She went over the treatment plan again and we discussed side effects and the strategies we'll use to deal with them. I got a better picture of how each of the three chemo cycles will go. I learned that in my particular treatment plan the cisplatin (the chemo drug) is serving as a booster for the radiation - it's the radiation that will do the real work. The cisplatin causes some DNA damage to rapidly dividing cells, then the radiation delivers even more DNA damage to the tumor and lymph nodes (I'm not sure whether the lymph nodes are referred to as tumors in this case - I think not). Cause enough DNA damage and the cells will kill themselves.

Cells have numerous and varied techniques for repairing DNA damage. Damage occurs all the time due to chemical entities like free radicals or external forces like environmental radiation (including things like cosmic rays). However, if the built-in DNA repair mechanisms can't make sufficient repairs, other entities in the cell recognize the accumulated damage and start a process of cell suicide, referred to as apoptosis.

I also learned that I am on a "high dose" cisplatin regimen. Big Sister tells me that has been one of the advances in cancer treatment: that in some cancers fewer cycles of higher dose chemotherapy are more effective than more, lower doses. "Shock and awe," she calls it. Weirdly, cisplatin dose is determined by estimated Body Surface Area computed from height and weight. My dose is 100mg/m2 and my BSA is 2, so my actual dose is 200mg per cycle.

Cisplatin can be very damaging to the kidneys. Thus, along with the infusion of cisplatin I get several liters of saline solution (water with electrolytes) to flush the kidneys. I also go back the next day after chemo for another infusion of fluids, then a week later and a week after that. There will be three cycles of chemo and fluids.

Pumping all that fluid in takes time: about 4 hours. I thought I would spend that time writing blog posts, but instead I napped and watched TV and ate and relaxed. I had a fair bit of anxiety about the first infusion so I was a little too distracted to write. I never even took my laptop out of my bag.

At one point a volunteer came around and asked if I would like a hand massage. "Yes!", I said. Wow was that nice. She had very warm hands and the first thing she did was encase my hand in hers. That warmth was very comforting. I dozed off for most of the massage. How pleasant. Thank you, volunteer.

Other volunteers come around with a food and drink cart. There are also free snack bars throughout Daba Farber patient areas with cookies, crackers and beverages.

Overall the first infusion was uneventful. Until the drive home, when we entered an unlucky confluence of events. A thunderstorm struck as I was finishing up. We were enjoying watching it out the window. But there was also an early game of a double-header at Fenway Park a few blocks away and the thunderstorm rained it out. So we left into that traffic. Which then turned into rush hour. It took a little more than two hours to get home - a drive that is about 22 minutes in no traffic.

Remember those multiple liters of fluids they had pumped into me? Let's just say I'm glad there was an empty drink bottle in the car. And a little bit of biohazard waste was improperly disposed of on the side of Boston roadways.

Tuesday, June 18, 2013

Now on Twitter!

I've never had much to say on Twitter, but sometimes while waiting for treatment or sitting around feeling funky maybe I'll have a thing or two to say.

Follow @CancerFunTime on Twitter for all the trivial oncology snark you can handle!

If you're viewing this on a desktop (as opposed to a phone), you can see the most recent tweets over to the right.

Friday, June 14, 2013

Lovely and Amazing

Wonderful Wife has said to me several times during the past month, starting on the day I first heard the word "malignancy":

"You always take me on the most interesting adventures!"

By the way, I chose Wonderful Wife's pseudonym deliberately so that every time I refer to her you (and I) are reminded how wonderful she truly is.

She really hated that movie.

Are You Still There?

And... We're back!

That was a lovely interlude in the Kingdom of No Internet.

Really! It was very cool to be in a place where literally no one was seen staring at a little screen in their hand!

Before we get rolling again let me say this: you guys are boooooooring! Not one single one of you has commented on any of the 30 posts so far. C'mon, Dear Reader! You must have questions! Snarky comments! Errors to point out! This is not meant to be purely one-way communication, here. I guess in the end it's fine with me if I'm just typing into the abyss but it's not my preference!

Another note: I'm typing this into the abyss at 2:30 AM. I get awakened in the night by something: being too warm; the cat walking over me; coughing - whatever. And if my brain reaches a certain level of consciousness then it's all over: I'm going to be awake for a while. Lately it's you keeping me awake. I start composing one or more blog posts and get so involved in it that I realize I'm not going to sleep until I get out of bed and write the goddam thing!

To tell you the truth I don't mind. I enjoy feeling that much drive to write.

OK. with the preliminaries out of the way...

A little weird Cancer Fun Time! psychological context for you: ever since I was initially diagnosed I've had this strange inclination to keep cancer separate from my "normal" life. When I first started telling friends about my cancer via email I insisted on keeping the cancer conversation separate from our normal email conversations. I also have kept a family blog for years (which has been sorely neglected this past month!) and I'm not sure how much I'll mention cancer there. Ditto for Facebook. I definitely don't envision that I'll announce having cancer on Facebook, and I may never mention it at all to my friends there.

That's why I've been mysterious about where I went on this recent hiatus: that's "real" life and according to the "rule" of the previous paragraph it doesn't belong here.

We'll see how that rule plays out. I.e. whether it survives. I find the rule fascinating because cancer is normal life. Probability says all of us will be touched by cancer multiple times during our lives, either when a loved one is diagnosed or we ourselves are.

So I'll make a little tear in the veil and tell you where I was: a Disney Cruise in the Bahamas.

Wonderful Wife and I have been saving for a couple of years toward a European trip with The Progeny so we had some vacation funds available. Our summers are normally packed with weekend adventures and camping as well as a two-week trip to our ancestral homeland and that will all be severely disrupted this particular summer. We saw a window between diagnosis and the start of treatment and seized it for a 4-night cruise.

We managed to keep it a surprise until Sunday morning at 5:45 AM when we woke up The Progeny and told them there was a surprise for them on the kitchen table: fake "cruise tickets" we had made that required immediate departure.

Doctor Rad (who I now wish I had named "Doctor Zap") and Doctor Chemo (who I now wish I had named "Doctor Tox") were onboard with the plan. In fact, Doctor Rad rearranged her normal schedule to accomodate us and still accomplish the radiation treatment planning in time to start treatment when planned. (Thank you Doctor Rad!).

Doctor Rad's main concern about me going on a cruise was choking, since Pappy the Papilloma is getting more obese all the time and being obstructionist in my throat. I assured her that I'm used to it and learned a month or so ago that I need to chew my food very carefully before swallowing. If you remember way back in The Beginning, it was partly an increase in minor choking events that sent me to the doctor in the first place.

Friend Britt's main concern was norovirus. A serious illness like that could delay cancer treatment. Friend Britt happens to spend part of her work time in a Travel Clinic advising world travelers how to stay healthy. She advised me to avoid using public toilets, to avoid eating uncooked foods unless I peeled them myself and to wash or sanitize my hands often. I thought of her every time I saw the preventive measures Disney Cruise Lines takes: all toilets designed to make them hard to flush without closing the lid (designed to minimise aerosolization of germs); lots of encouragement to wash hands often and especially before meals; a crew member handing out sanitizing hand wipes to every passenger entering every restaurant at every meal; a crew obviously cleaning the ship 24/7; and all cold or wet food kept in glass cases in individual servings that a server hands you upon request - no passengers pawing or sneezing on cold or raw food.

So ya, the cruise was all great and happy and a lifetime of memories yada yada yada. Let's get back to the cancer we're all here for!

It so happened a cold had been making it's way around the family for a couple of weeks and I finally felt it coming on the day before we left. Fantastic! It actually fit a pattern for me: right after a stressful period, when the stress is finally relieved, that's when I get sick.

For everyone else it had been a very minor cold with just a day or two of minor discomfort. That's how mine started out. But then we flew to Florida and had a long active day and my cold didn't like that. It got worse.

The head cold portion went fairly quickly but then it moved into my chest and resulted in a persistent cough. And that was not A Good Thing since I already have a compromised throat.

Side note: when you are about to board the cruise ship you have to sign a declaration that you and your party are not sick at the moment and have not been sick for the past three days. I had no idea what the consequences of answering "yes" to those question would be but I was not about to find out! I lied! But of course I would take whatever precautions I could to avoid spreading my illness to other passengers. Besides, I knew I wasn't bringing a gastrointestinal illness aboard - just a cold.

The cough started cranking up my throat sensation from discomfort to actual pain. And when the cough turned productive, the phlegm I coughed up started containing moderate amounts of blood. Sometimes not so moderate.

Pappy the Papilloma was aggravated.

Fortunately he seems to heal fairly quickly. Remember how chemotherapy works by interfering most with the cells in the body that are dividing most rapidly, and that the GI side effects of chemo are due to that fact that the cells lining the GI tract are among those cells? It also means those linings recover quickly from insult.

So the last two days of the cruise I spent some of my time expectorating sanguine mucous. Mostly cleared now. But I'd better inform the doctors today.

Some closing notes on the cruise itself:

It was a blast! I highly recommend it. It's more expensive per day than any other vacation I've taken but it's also completely immersive and kids are on Cloud Nine the whole time. I'm fully aware of the profit-making corporate nature of the Disney empire but for family vacations they really do it right.

I noticed, and I overheard many other passengers remark to crew members, that the crew members seemed to never sleep. I would see the same servers, for example, working early breakfast and late dinner. On the last day we commented to one of our servers that we didn't want the experience to end. He said the boat sails again in just a few hours after we get off so we could go again. I asked if he sailed again then and he said yes. We learned that the crew works 14 hours days 7 days a week (the Dream, our ship, sails our 4-night cruise plus a 3-night cruise every week, repeatedly. Forever.) with no time off. They sign up for a six-month contract. Then they have two months off (our server remarked that it takes one of those months to recover). Then they do it again.

I can't imagine.

When we got back to the Land of Internet I looked up reviews by Disney cruise employees. You know what I found? Every review I read rated the job 4 or 5 stars. They all loved working with such a diverse crew (the Disney materials say the crew has members from 60 countries - each crew member has his or her country of origin on his or her name tag - great little geography lessons for The Progeny). They all remarked on how well the company is managed and how heard they felt as employees, how well they were trained and how empowered they felt to make customers happy and even how privileged they felt to be able to give families such great memories. They all said the work was grueling but that they wouldn't trade the experience for anything. Maybe Disney is somehow gaming the review sites, but I was impressed.

That's pretty far afield from cancer but I thought it was interesting.

Anyway, I'm back. And treatment starts in four days.

Friday, June 7, 2013

Taking a Breath

Well, my Dear Reader, you are now up to date with current events. I made it!

Just in time, too. As soon as we had the appointments for consultations set, Wonderful Wife and I started planning a trip. We wanted our family to have some fun together before treatment impacts family life. That fun begins Sunday and will occur where internet access is not readily available. Therefore, Cancer Fun Time! will go dark for most of the next week.

Fear not, though. When I return I can tackle the list of background topics I've collected over the past few weeks:

  • Review the process a newly diagnosed cancer patient goes through, step by step.
  • My favorite cancer book.
  • Cancer lingo: sarcoma, carcinoma, etc.
  • DNA Sequencing for Dummies.
  • The history of anti-emetics.
  • Cancer genetics: oncogenes, tumor suppressors and mutation.
  • Confirmation bias.
  • Targeted cancer therapies.
  • Breaking Bad

I'm sure I'll think of more. Of course, I'll continue the narrative posts as I move into the treatment phase, too.

Meanwhile, please feel free to use the comments (on any post) to correct misstatements I've made, ask questions, or suggest topics we could learn more about together.

Hey, Wait a Minute!

At some point last week when Big Sister was aiming her Reality Ray at me and driving home what treatment will be like, Wonderful Wife said:

"It's all about the outcome. I don't care if treatment involves beating him with a stick so long as he lives."

I'm (Just Like) a Movie Star!

It is quite a coincidence that the very week I received the final diagnosis for my tongue cancer is the week that the disease received a great deal of media attention due to a famous sufferer: Michael Douglas. I find it kinda cool, as it gives a much wider audience some context and understanding of this particular disease.

It's convenient shorthand to be able to say, "I have the same cancer as Michael Douglas."

It's also a good opportunity for a little education. Check out the National Cancer Institute page on HPV and Cancer.

Here are the key points:

  • Some types of sexually transmitted human papillomaviruses (HPVs) can cause genital warts. Other types, called high-risk or oncogenic HPVs, can cause cancer.
  • High-risk HPVs cause virtually all cervical cancers. They also cause most anal cancers and some vaginal, vulvar, penile, and oropharyngeal cancers.
  • Most infections with high-risk HPVs do not cause cancer. Many HPV infections go away on their own within 1 to 2 years. However, infections that last for many years increase a person’s risk of developing cancer.

In a future post I'll argue that you should be getting your children vaccinated against HPV. The argument is pretty simple: we can almost completely prevent cervical cancer and my form of oral cancer if the population is widely vaccinated. You can't say that about any other cancer: that we know exactly how to prevent it and it's easy.

In my opinion, failure to protect your children against a preventable cancer because of prudishness or baseless mistrust of vaccinations is irresponsible and cruel.

Thursday, June 6, 2013

How Do You Spell Relief?

Holy shit. What a day.

This is a very long post. Perhaps the exhaustion you feel reading it will give you a sense of our exhaustion living it.

Today I was scheduled for two scans: a PET scan to check for remote metastasis; and a radiation treatment preparation and planning CT scan. The PET scan required a 6-hour fast and the CT scan, which was only two hours later, required a 4-hour fast. So no food since last night.

Although come to think of it I was awake from 3:00 - 5:00 AM being terrified. I could have eaten then!

Little Tech Talk here:

PET is an abbreviation for Positron Emission Tomography. It is a type of medical scan in which a radioactive (positron-emitting) tracer is injected into the patient. Then the patient is run through a scanner that can detect the emitted positrons along with the position of the emission source in the patient's body. It is typically performed in a scanner that has both CT and PET capabilities. The PET imagery itself is relatively low resolution and does not show anatomy. By combining it with CT, the resulting images can clearly show the emission sources in the spatial context of the anatomy.

The most common tracer is glucose chemically bonded to a radioactive tag. In this way, the PET captures areas of high metabolism. Cancer cells are furiously metabolic, so they are the first to take up the tagged sugar, and they take up more of it. Thus the PET/CT scan of the whole body should show clusters of cancer cells as glowing blobs.

The image to the left (from Wikipedia) is an example. The caption describes it as showing a colorectal cancer that has metastasized to the liver. The blob in the lower abdomen is normal accumulation of the tracer in the bladder, and you can also see normal accumulation in the kidneys. Presumably the colorectal cancer in this patient had been previously removed via surgery as none is visible. You'll also notice at the top of the image that the brain is always highly metabolically active.

My chemist friend John pointed out that PET relies on radioisotopes with pretty short half-lives. You don't want a patient walking around for days or weeks sloughing off radioactive skin flakes or urine. That means that the scanners have to be relatively close to the sources of the isotopes, which originally could only be produced at large linear accelerators. The tech who did my scan said Dana Farber used to get their isotopes from Maryland and batches were flown to Boston daily. If the weather was bad and the tracer didn't arrive, that days scans were cancelled.

An indirect connection of John's apparently got rich by contributing to the invention of devices that could produce the isotopes more easily and locally. Dana Farber's isotopes now come by van from nearby Woburn, MA twice a day.

The tracer is administered by a special machine on wheels. About the size of a portable ultrasound machine. I presume they load it with cartridges of tracer and it shields the techs from the radiation. The tech inserted the IV and flushed it, but then turned on the machine and stood a distance away while I received the tracer. I didn't feel a thing. Then the IV was removed.

I waited 50 minutes for the uptake of the tracer. I suspect the timing is pretty exact: enough time for the cancer cells to take up the labelled sugar but not enough for it to be taken up by most normal cells. Then I walked to the scanner room and laid down on the scanner table.

The CT portion of the scan was performed first and only took a minute or two. Then the PET portion of the scan began. I was moved lengthwise through the scanner with seven or eight different stops, each lasting about 5 minutes. I dozed. The stationary positions are to allow the detectors around the scanner to collect the gamma rays that were radiating from my body. Obviously the tracer is not highly radioactive as that would be damaging to the patient. So the detectors take a while to collect enough radiation to supply a good signal for imaging.

Then it was over.

I mentioned previously that we are leaving this weekend for Something Really Fun before life gets even more abnormal during treatment. In the waiting room, Wonderful Wife and I discussed whether we wanted to know the results of the PET scan before our family trip. We decided we would not ask Doctor Rad. If she had good news she would tell us. If she didn't tell us we could pretend it was because she didn't know yet and enjoy our vacation in ignorance.

Now we had an hour to kill before we had to be at Brigham and Womens Hospital on the next block for the radiation therapy planning CT scan with Doctor Rad. Wonderful Wife had never seen the Harvard Medical School quad, so went there and sat on a bench and talked.

We've been doing a lot of talking lately. Wonderful Wife has that moniker for a reason. She was already exceedingly wonderful even before cancer showed up.

At 2:00 we headed over to Brigham and Womens and found the Radiation Oncology department in the basement. A volunteer was sitting in the hall near the registration desk playing the harp. I guess if the radiation doesn't work there's always heaven to look forward to.

I changed into a robe and went into a treatment prep room and got another IV. The nurse told me she always asks if a patient has other procedures that day because the PET tech could have just left mine in from earlier. Oh well. Fortunately I don't mind needles at all. After a few more minutes of waiting we were taken to the scanner room where we were joined by Doctor Rad and a bunch of other people.

I described IMRT (Intensity Modulated Radiation Therapy) in a previous post. When I receive radiation therapy it will be via a multiple beams that are focused, moved and modulated by computer. But the preparation for the treatment requires that Doctor Rad and a team build a precise map of my head, including the internal structures, so they can sculpt the radiation pattern to hit the cancer but leave as much non-cancer tissue undamaged. This planning session gives them a calibrated scan with which to do that.

Also, since I will have 35 radiation treatments (5 days per week for 7 weeks) they need to make sure that the beams are properly aligned with my head and neck, identically at each treatment. In the past they did that with small tattoos, which they would then align with a laser before each treatment. But now they make a custom plastic mesh mask that will hold my head and shoulders even more precisely. They will bolt me to the table!

The photo shows my mask just after they finished making it and marking it for alignment with the treatment machine. They told me I can have it when treatment is over. We joked that we'll hang it on the wall. Mom, however, tells me I'll hate that mask by the time treatment ends.

After the CT session was over I joined Wonderful Wife in a small private waiting room just off the scanner room. I showed her the mask. Then Doctor Rad joined us.

I had some questions I had written down to ask her. She addressed those quickly.

Then Doctor Rad mentioned that the first look at the PET scan looked good. I told her that I had gotten myself pretty scared that the PET scan would not be clean. She said she would go check, then quickly came back and told me that it was indeed clean. She added that the pathology second read was also complete and my tumor was confirmed as HPV positive.

I burst into tears.

The two things that could indicate a worse prognosis for me were eliminated.

The relief I felt was enormous. I sobbed.

With that news, our diagnosis chapter came to an end, one month to the day from when I first saw Doctor W about a sensation in my throat. It has been one very long month. A slow-motion emotional rollercoaster. Somehow we survived all that uncertainty and fear.

I now officially reside in the diagnostic category with an 80% 5-year survival rate. Even Doctor Rad seemed relieved.

It seems weird to be ecstatic about having a cancer with only a 20% chance of killing me. But I'll take it.

Treatment is scheduled to begin June 19. Sooner if Doctor Rad can arrange it.

Have I mentioned that I feel relieved?

Night Terror

Yesterday evening I went to the dentist. By coincidence I had an appointment to fill a suspected cavity that the hygienist thought she saw at my last cleaning on April 18. My dentist had been out of the office that day. That means he wasn't there to perform the neck exam that he always does. He probably would have been the person to discover this cancer. Of course those two weeks didn't make any difference but it's a funny coincidence.

At the consultation at Dana Farber, Doctor Rad gave us a stack of paperwork to give to my dentist ASAP. All outstanding dental work has to be done before treatment can begin, and I need custom fluoride trays made because during and after treatment apparently I'll have to soak my teeth in fluoride for 30 minutes per day. If I hadn't had a recent cleaning I would need one.

One of the requirements was a "full set" of dental x-rays. I assumed that meant the normal set that one gets once get annually during dental checkups.


This was a set of 14 films, 10 of which are quite large and could barely fit in my mouth. When she put the first one in I didn't realize that it was larger than usual and I closed my mouth too quickly and jabbed the sharp edge of the film into the roof of my mouth. Ouch. A couple of the bottoms really didn't fit but I had to bite down to grasp them. They were digging into the floor of my mouth very painfully . It brought me to tears.

That surprised me. I had gone to work all day and had many conversations with people about my current status and I had been fine. Now I felt like I could barely talk to anyone in the dentist office without crying. I was dreading the filling - any discomfort was going to put me over the edge. Fortunately all the dentist did was make the fluoride tray molds. The suspected cavity was a false alarm.

Thank goodness.


Lumpy the Lymph Node has grown and is a little uncomfortable but is not causing real pain. But I woke up at 2:00 AM dreaming that Lumpy was very painful. We're about to leave on Sunday to do Something Really Fun for 5 days before treatment begins. Suddenly I was imagining being very uncomfortable or in pain on the trip.

As I lay awake I realized the real cause for my edginess. I have my PET scan this morning to check for metastases - to see whether the cancer has spread to other parts of my body than my neck. I believe I heard Doctor Chemo or Doctor Rad say the other day that if this cancer has metastasized it is not treatable. So there's a lot riding on this PET scan.

I realized I'm terrified that we're going to find mets.

This is the most scared I've felt since I first heard I might have cancer.

Tuesday, June 4, 2013


Wonderful Wife and I spent the afternoon at Dana Farber Cancer Institute meeting with a multi-disciplinary oncology team. We met with a medical oncologist I'll refer to as Doctor Chemo, a radiation oncologist I'll refer to as Doctor Rad, and an ENT/head & neck surgeon I'll refer to as Doctor Cutter. They are practitioners in Dana Farber's Head and Neck Cancer Treatment Center. We met several other members of the treatment team as well.

We had to wait a while beyond our appointment time for the team to see us. But that was fine. We realized that we would also get the same attention they were currently giving to some other patient, and we wouldn't want them to rush with us. Other families we saw in the exam area looked very grim and we realize we have much more hope for successful treatment than many other patients.

Wonderful Wife and I were actually in pretty high spirits. We'll assume that I'm in that HPV+ 80% survival rate category until someone tells us otherwise. We feel lucky to be in that category.

Then the team arrived, along with a nurse practitioner and a medical student. A lot of people in a small room! They gathered a bit of history and asked some symptom questions. I informed that them I'm fairly savvy about cancer so they can answer with jargon if they wish. They thought it was pretty funny that I had given names to Lumpy the Lymph Node and Pappy the Papilloma.

Doctor Cutter took the lead and performed a thorough physical exam of my tongue, mouth and neck. They had me stick my tongue out and move it in various directions. They remarked positively that obviously the tumor had not affected mobility yet, which they later remarked was an indication that it had not infiltrated the tongue muscle significantly.

Each of them manipulated Lumpy the Lymph Node, with Doctor Cutter doing so pretty aggressively. It doesn't hurt so that was fine. They all remarked that it was completely mobile. I asked what it means when a lymph node is fixed. They told me it means the node has broken its encapsulation and has become bonded to the surrounding tissue, which is presumably a Bad Thing.

Doctor Cutter tried several techniques to see Pappy: by gripping my tongue with gauze and pulling on it; by using a tongue depressor; and by pushing down on the back of my tongue with his gloved finger. He couldn't see Pappy via any of those techniques. Pappy is hiding way back there.

Then Doctor Rad inserted a slender tubular video camera through my nose and down my throat until they could see Pappy. They discussed it a bit and had me perform various actions like puffing up my cheeks with air, swallowing, etc. so that they could see different structures. I asked if I could see and the moved the cart so I could see the monitor.

The first thing I saw was what looked like a deep groove in the back of my tongue. I asked if the groove was normal and they all replied, "No." It turns out Pappy is shaped like an inverted U, with the legs of the U looking like parallel ridges running down the sides of the base of my tongue. The tumor is also slightly lighter colored, with some parts almost white. It wasn't as bumpy as images I had looked up online but it did have some obvious bumps. Nor did it have the cauliflower appearance that the "papilloma" name refers to.

If you do an image search for oropharyngeal papilloma you'll find lots of gross pictures of mouth cancers, but I can't find any that show the same site as mine. That's interesting because mine is in a very typical site for the HPV+ variety. Most of the pictures I found I would guess are due to smoking or chewing tobacco.

I wish I would have used my phone to take a photo of the monitor but I didn't think of it at the time.

After the exam the team left the room to discuss my case, telling us they would return individually to discuss proposed treatment.

They were gone quite a while. Then Doctor Chemo joined us again and described their diagnosis and plan.

She started by saying the assumption going forward was that the initial pathology was correct: HPV+ squamous cell carcinoma.

Here are my notes from the meeting with Doctor Chemo:

They will obtain the biopsy samples and redo the pathology to confirm. This is routine for them.

The tongue tumor is staged T3 and the node is staged N2b (two nodes, 3.5cm and 1.5cm). Overall stage is 4 (she didn't give a letter). [See the TNM staging system]

I will have a whole body PET scan on Thursday to check for mets and as a baseline to compare with another PET scan 3 months post-treatment.

No surgery. It would leave me with too much deformity.

I would have 6-7 weeks of multi-beam focused radiation.

I would have three rounds of cisplatin (no dose yet). 1st cycle at start of radiation. 2nd cycle three weeks later and 3rd cycle three weeks after that - approximately at the end of radiation.

I would not have a port, all three chemo cycles will be administered via my arm.

Radiation is 5 days/week.

I will receive fluids with the cisplatin and fluids again the next day each time to minimize kidney damage.

I am to notify them immediately of any fever during treatment.

She mentioned I might read about cetuximab as an alternative to cisplatin. It is investigative and not standard of care at this time.

If the redone pathology comes back HPV-negative for some reason, I have a worse prognosis. If that it the case it sounds like they will recommend sequential induction therapy. That would be a round of chemo alone first (including 5FU, she didn't say what else), followed by a chemo/radiation combination. It is not investigational, it is apparently first-line for that indication, but there is also a related trial ongoing.

If the PET scan comes back with remote metastases, I believe Doctor Chemo said "that would not be treatable." I can't remember her exact words. Her statement took me aback so much I didn't even think to write it down.

They have Tumor Board every Wednesday and my case will be discussed next week.

If I have toxicities or excessive side effects they will adjust dose or take other action to mitigate.

A while later we met with Doctor Rad. Here are my notes from that meeting:

I will have a CT scan soon for radiation planning, as well as have a mask made for head positioning during therapy.

The first two weeks I'll feel pretty normal.

The second two weeks I'll start to have a sore throat and fatigue and start to lose taste.

The remainder will be more difficult.

One month after treatment ends I should feel better but it will be a year until completely normal.

Taste and saliva will come back slowly but won't be the same. My food preferences may change: some tastes I used to like I won't and some I didn't used to like I might. [Big Sister also told me I may have mouth dryness issues and may no longer like dry foods.]

She recommended a book called "Life on the Line" by a chef who had tongue cancer. The last part of the book is about recovery of his taste after therapy.

I signed the consent form for treatment acknowledging the possible side effects and risks of both chemo and radiation.

It takes about 2-3 weeks to complete the planning, get the second pathology results, etc.

She usually does planning CTs on Monday but we'll be gone Monday. She will try to get us in this week instead.

Finally we met with the Program Nurse, who told us Dana Farber has all the services we might need: social workers, dietitians, speech therapists, etc. They even have free housing if we were from out of town.

The doctors ordered a baseline blood draw, which I had taken before we left.

Wonderful Wife and I both liked the team and trust them. Since this is very similar to the treatment plan proposed by Big Sister's colleagues we'll just move forward at Dana Farber. I also ran this treatment plan past Big Sister and she saw nothing she disagreed with.

I'll most likely cancel the appointment I have for another consultation at a different hospital on June 17.

We received no surprises, which is good news from our point of view. However, there are still two things that could kick me out of the HPV+, 80% survival rate bucket in which we've been assuming I reside:

  • A PET scan that shows remote metastasis
  • A second pathology examination that conflicts with the initial HPV+ conclusion

So we're not quite there yet.

Sunday, June 2, 2013

Spreading the Word

Now that I have told the family it's time to spread the word to people who will notice my absences and physical changes during treatment.

Last week I told the coworkers with which I work most closely. I knew they'd be starting to wonder what was going on because I was missing a fair bit of work. On Friday, I felt it was time to tell the rest of the people in my office. Here's the email I sent to them:

Dear Colleagues,

Those of you who work on teams with me know that I've had more absences than usual recently. For the past month I've been investigating a medical issue and have arrived at a diagnosis of a malignancy at the base of my tongue (in my throat). I prefer to let you all know this way instead of having numerous individual conversations - that way everyone gets the same information.

I finally received pathology results on May 28 and they are somewhat encouraging. The type I have has a cure rate of approximately 80%.

Obviously it's a shock to receive such a diagnosis, but I couldn't live in a better time or place for it. Much progress has been made in cancer diagnosis and treatment in my lifetime and it is accelerating. Boston is a global center of cancer research and treatment leadership, some of which is happening right here at [my employer]. Cancer is the first disease area in which truly personalized medicine is emerging and tumor sequencing is leading to better treatment decisions that can avoid wasting time on ineffective drugs. At my request the surgeon who performed my biopsy collected sufficient tissue for sequencing and I will insist on finding an oncology team that incorporates sequencing in their treatment planning. Finally, my mother is a two-time cancer survivor, as was her father, so hopefully I've inherited her "tough old bird" survival genes. I intend to emerge from the other end of this detour as healthy as I was when I started.

I tend to be pretty open in most aspects of my life (this message is evidence of that :). I was raised by a teacher and an engineer who loved to explain things and I have carried on those threads in my life. For the past few years learning about cancer biology has been somewhat of a hobby. I will combine those facets and write about both the experience of being a patient and the scientific, medical and drug development contexts in which that experience occurs.

My main coping mechanism has always been humor. At work you only get to see a portion of my humor spectrum but it is wide and extends far into the "black". That will help explain the title of the blog I've started: Cancer Fun Time! If you want to delve into the specifics of my diagnosis and follow along on this little detour you can do so there. Don't go read it right now, though. You're supposed to be working!

If colleagues beyond the recipients of this message ask about my absences or my diagnosis you are of course free to share what you know with them or forward this message.

Currently I am physically fine except for the same minor throat sensation that sent me to my family doctor in the first place. I have appointments with two different oncology teams in the coming weeks to determine a treatment plan. It's going to be a rough road, but many others have successfully travelled it before me.

Please don't hesitate to ask if you're curious about what's happening.

I received many sympathetic, encouraging and admiring responses.

Saturday, June 1, 2013


In 2005 my friend Paul was diagnosed with advanced stomach cancer that had spread to his esophagus. Although the survival rate for his combination of diagnosis and stage was quite low, Paul beat the odds and is a healthy dad of three young boys today. Since I figured Paul endured the same types of treatment as I will receive, especially radiation to the neck and mouth, I gave him a call to learn from his experience. In combination with what Big Sister had told me I'm getting a clearer picture of what's coming.

The first two weeks of treatment it sounds I'll feel fairly normal with just some increasing fatigue.

During the middle portion of treatment it sounds like my throat will start to become fairly sore and I may begin to have difficulty eating. It sounds like I will have a feeding tube installed in my torso fairly early in the process so that I can maintain nutrition when I can't swallow. The chemo may start to give me mouth sores.

In the latter portion of treatment I will almost certainly not be able to swallow food during some periods. Paul told me that the mouth sores heal pretty quickly. He had periods when he used the feeding tube interspersed with periods during which he could eat. Ravenously.

Both Paul and Big Sister told me that anti-emetics (anti-nausea drugs) are very good these days if taken according to instructions. So nausea and vomiting should not be a serious issue. That was what I was dreading most: the prospect of vomiting through a destroyed throat.

Paul also said that during his three-week chemo cycles he had a medium week, a bad week, and then a week in which he felt super -energetic and was actually productive.

Both Big Sister and Paul encouraged me to take it one day at a time. Just deal with the challenges I have today - don't worry about what might happen tomorrow or next week.

Big Sister also pointed out that the majority of cancer patients are already physically compromised in one or more ways: lifelong smokers or drinkers, obese, elderly, diabetic, etc. Since I am going into this in a quite healthy condition I may experience less severe side effects.

Both have also put the process in perspective. I will have one bad month and then begin to recover. Over time, that month will fade into memory.

Just get through it and move on.

Editor: Hey, I thought this blog was supposed to be funny? Where's the humor lately?