Thursday, May 30, 2013


I've been commuting to work by bike, weather permitting, for about eight years. My current commute is 11 miles each way from a suburban town into downtown Boston.

Today I rode to work for the first time in a week. I managed not to die by the side of the road lying in a pool of irony.

Coming Into Focus

I mentioned in the previous post that I forwarded my diagnostic reports (CT and biopsy) to Big Sister and that she forwarded them to colleagues in the cancer center where she works. Specifically, to a medical oncologist (chemotherapy doctor), an ENT/head and neck surgeon and a pathologist. They were very kind to review my records and give Big Sister and me their remote diagnosis and expected treatment plan if I were their patient.

The medical oncologist said:

Generally should have complete staging exam by surgeon (check the uvula and bx). This sounds like stage 2-3 disease based on the neck node we would use chemo/xrt and only operate on the neck if surgeon felt necessary.

"XRT" refers to "external radiation therapy." That means normal radiation therapy with beams from outside the body as opposed to less common treatments where radioactive materials are injected or inserted into the body.

The ENT surgeon said the following:

Your notes were very informative.

It appears your brother has squamous cell carcinoma of the right base of tongue. From the CT report it appears the parapharyngeal space lymph node contain metastasis, which is a basin of lymph nodes high in the neck, not normally dissected in neck dissection. I think he has a stage IVa.

Bottom Line – Treatment should be concurrent radiation therapy and chemotherapy with cisplatinum and 5FU. His radiation should be done with IMRT and he should receive between 3 to 5 doses of cisplatinum and 5FU during the radiation. Surgery has no role here, including robotic surgery which has not shown any benefit in cure or quality of life. This is my bias, but the data supports this as well. He has an excellent chance of cure. Michael Douglas, the actor, had a cancer similar to this and had the same treatment in L.A. He is making movies again.

He can call my cell phone.

My first reaction was that "Stage IV" and "metastasis" are not usually found in the same diagnosis as "excellent chance of cure." But I've commented before that I'm from an older time when those words typically meant a death sentence. That's an indication of progress over the past 50 years: that even advanced cancer can be "cured". Nice to hear.

As for the lingo:

  • metastasis: from Greek meaning "to remove, to change". In cancer it refers to cancer cells that migrate from the original site to a different site in the body and establish themselves there as separate tumors. It's a Bad Thing. The remote tumors are referred to using the shorthand term "mets".
  • cisplatin: a chemotherapy drug approved in 1978. It contains platinum - like all chemotherapy drugs it's a poison. It works by binding to the DNA of dividing cells and either preventing cell division or introducing DNA damage that, when accumulated, will cause the cell to kill itself ("apoptose"). The side effects of chemotherapy are due to the fact that it acts in this way on *all* rapidly dividing cells, which include the cells lining the entire length of the GI tract (mouth to anus).
  • 5FU: also called flurouracil. Another chemotherapy drug. 5FU interferes with the synthesis of new DNA bases in cells. Rapidly dividing cells need to synthesize a lot of DNA in order to divide (they need to duplicate their DNA as part of replication). 5FU starves them of raw materials for DNA, so the cells die. Also a systemic toxin that effects all rapidly dividing cells in the body but has the most impact on cancer cells.
  • IMRT: Intensity-Modulated Radiation Therapy. A form of radiation therapy in which 3D imaging is used to model the tumor and surrounding critical structures and then sculpt the radiation pattern fairly precisely to deliver radiation only where desired. This "modern" technique can result in much less damage to surrounding structures.
    Wikipedia says:
    Radiation therapy works by damaging the DNA of cancerous cells... Cancer cells are generally less differentiated and more stem cell-like; they reproduce more than most healthy differentiated cells, and have a diminished ability to repair sub-lethal damage. Single-strand DNA damage is then passed on through cell division; damage to the cancer cells' DNA accumulates, causing them to die or reproduce more slowly.
  • "not normally dissected" means that a node like Lumpy the Lymph Node would not normally be removed surgically. The radiation and chemo will (hopefully) shrink it.

Big Sister followed up this diagnostic and treatment information with specifics about what treatment might look like. She expected that I would have 5-8 weeks of radiation with concurrent chemotherapy, then continued chemotherapy for several months after that. She had this to say:

I know all of this sounds scary – but you have around an 80%+ chance of cure with the treatment plan outlined for you. You will have one very rough year – with the first 6 months when both radiation and chemotherapy will be impacting you physiologically - being very exhausting and challenging. The worst time period will be the last few weeks of radiation and the two or three weeks after radiation is done, and then you will begin to recover some of your mojo. After that - you will start to mend and heal, but it takes at least one full year after treatment ends to start to feel like yourself again. To expect otherwise is not reasonable.

That was scary at first. But we talked a lot more and I started to adjust to it. Big Sister told me a lot of strategies to help endure the treatment, so I have tools and advice readily available.

Thousands and thousands of people have done this before me and survived.

The pathologist replied a bit later with this:

Sorry that your brother is dealing with this. I saw the path report from the tongue biopsy, but didn't see the one from the neck FNA. There is reference to it in the ENT report and it sounds like it was atypical with necrosis and atypical squamous cells - certainly suspicious in this setting. I think getting second opinions is always a good idea. The slides from both the tongue mass and the FNA could be reviewed at another institution with a good reputation. If I can be of any assistance I would be happy to talk with you or your brother.

A little more to be concerned about there with unclear but suspicious information about Lumpy the Lymph Node. But from what I've read even with spread in the neck it is still considered highly treatable (I'll write about confirmation bias in a later post - mine is currently very active).

It was so helpful to get these diagnostic interpretations from cancer practitioners. It gave us a baseline with which to compare diagnoses and treatment plans that I receive from local doctors.

I forgot to mention in yesterday's post that as soon as we got the pathology I started researching doctors at Dana Farber and then called to make an appointment. I have an appointment for a multi-disciplinary team consultation with a medical oncologist, radiation oncologist and surgeon on June 4.

Wednesday, May 29, 2013

Bringer of Good Cheer

Getting past telling The Progeny was a milestone. Now Wonderful Wife and I can talk openly around the house. The next step: tell other people.

The main times I cried during this period are when I contemplated telling other individual people. On the surface, it feels like I'm burdening them. Making them sad. Ruining their day. But going a bit deeper, I think the reason is that telling someone else means acknowledging reality a bit more myself each time.

Because, while I'm optimistic, the truth is this could kill me.

Friend Britt knew right away. She is a Nurse Practitioner and a very close friend. I tell her everything medical that happens with me because she's curious and then we both learn stuff and we also joke about it. Globus was just the kind of thing to discuss with her. So she was along for the ride when I got sent for a CT scan and then got the diagnosis.

I had told a couple of other friends because they happened to ask how I was.

But then came the hardest part: telling my parents and sisters.

I wanted to wait until the pathology confirmed the diagnosis so that I could at least tell them specifically what type of cancer I had. I didn't want them slogging through the same mucky uncertainty in which we had been mired.

I started with Big Sister. She has worked in cancer care for a Very Long Time. She is trained as a dietitian and started her work in cancer care helping patients figure out what to eat to maintain their strength during treatment. Then, at the same hospital, she transitioned into community work building and delivering cancer prevention education programs, especially in immigrant and poor communities. She also built programs to help people in those same communities navigate the health care system for cancer detection (i.e. mammography) and then treatment if diagnosed. She's been in the cancer treatment business for 20 years and is very wise.

Big Sister is also a doer. Very much a doer. When I told her on the phone (my family is all 3000 miles away), she was surprised and saddened for about 2 minutes and then she kicked into gear. She opened the firehose of advice on how to find a treatment team, how to make sure Wonderful Wife and I are supported through treatment and a thousand other pieces of advice gleaned from her long experience in the field.

Having someone as knowledgeable as Big Sister on my team is a huge advantage. I can't imagine how bewildered I would be as a newly diagnosed cancer patient if I didn't have a pretty decent understanding of the disease and an expert advocate like Big Sister to guide me through the labyrinth.

Later in the day I forwarded copies of all my records to her: the radiologist's CT scan report, the biopsy pathology and the notes from Doctor B to Doctor W describing his exam and biopsy. Big Sister forwarded them to a care team she works with, including a medical oncologist, an ENT/head and neck surgeon and a oncology dietitian. They were each generous enough to respond with specific advice they would give me if I was their patient. That was very helpful to me. I'll put that information in my next post.

The next task was to tell Los Parentes.

I dreaded telling them, probably for several reasons. Mom is a two-time cancer survivor and I didn't want to tell her that one of her children now has it. They are quite spry for their age but they don't need bad news and stress.

But I made the call. Of course I started crying when starting to tell Dad. But it's only the initial telling that is the hard part. I was fine soon after and of course their immediate response was positive: "What are the facts? How can we help? We're here for whatever you need."

I learned that I underestimate peoples' ability to handle bad news.

But I didn't learn it immediately: still had Little Sister to tell, and I decided to tell her the next evening but Los Parentes (who see Little Sister often) said they would tell her if an opportune time presented itself. They told her the next day and of course her reaction was the same - I underestimated her, too!


Wonderful wife had been watching me go through these emotional cycles of telling people. She was reassuring.

"You're expanding the circle," she said. "And that circle is going to fill up with love."

Wise Wife, too.

It did feel like quite a relief to expand the circle. Sharing helps diffuse the fear a little.

I also told the colleagues I work most closely with, via email. I knew they must be wondering why I was missing so much work. And I also told a few more friends and neighbors. I started getting better at it.

Finding Clean Air

In auto racing events, drivers talk about finding clean air - when they get out from behind other cars and have freedom to go faster. That's how we felt once we had the pathology results and a confirmed diagnosis. Sure, it would have been great if it somehow turned out to be benign, but there wasn't much chance of that and we weren't banking on it. Now that a malignancy is confirmed, it's time to consult with oncologists and figure out the treatment plan.

Doctor B's office set up a referral to a papilloma specialist at the Massachusetts Eye and Ear Infirmary. That's scheduled for June 17 - three weeks away.

I also self-referred myself to the Dana Farber Cancer Institute. Dana Farber was one of the first cancer treatment centers in the United States and is half named for Sidney Farber, the father of modern chemotherapy. It is affiliated with Harvard Medical School. I often attend cancer biology seminars at Dana Farber.

I researched the members of Dana Farber's Head and Neck Center online and identified a couple that looked right from their profiles. When I called to make an appointment, however, I learned that that's not how it works. You work through a Patient Coordinator and give information about your diagnosis. Then they select a team and you meet with the entire team on your first consultation. They scheduled that consultation for June 4 (a week away), with a medical oncologist (a chemotherapy specialist), a radiation oncologist (radiation therapy specialist) and an ENT/head & neck surgeon.

That's our next milestone.

Wonderful Wife and I feel like our feet have come unstuck from the clay and we can move forward. We feel ligher.

Tuesday, May 28, 2013

Mission Accomplished

I've written that when I first heard the word "malignancy" my first thoughts were "I'm going to die" and "How does one live without a tongue?" My next thought was, "How the hell am I going to tell my kids?" I have two daughters: Progeny the Elder is nine and Progeny the Younger is seven.

I googled that question, and the top hit was this page at the Dana Farber Cancer Institute right here in Boston. It contains excellent advice.

The first piece of advice is: calm down. You don't need to tell them this minute. Wait until you have had some time to adjust and achieve some peace. Then give a lot of thought to what you will say and what your goals are. Then have the talk with your kids.

When it came to specifics, the first couple of things wouldn't have occurred to me:

  1. Assure your kids that they didn't cause the cancer.
  2. Assure them that cancer is not contagious.

Then it gets to the hardest question of all, "Are you going to die?"

Of course that question from them was foremost in my mind and seemed terrifying to face. But the page gave an excellent suggested answer:

"I am not dying now. I am going to take strong medicine and/or have surgery to get rid of my cancer. I will be checked often by the doctors."

Ah. I can handle that.

Wonderful Wife and I are strong believers in being truthful with our kids about any topic. The trick is telling them the truth in a way that satisfies their curiosity but doesn't burden them with information they aren't ready for yet.

So. In my last post I described the call I received from Doctor B with the pathology results. Wonderful Wife happened to be on a rare Girls' Night Out when I got the call, and I was putting the progeny to bed. I texted her the news and she was elated. Not too much later she arrived home. The progeny were still awake. I decided to sieze the moment of relief and tell the girls while we were in a positive mood.

We did it perfectly. Exactly like I wanted it to go. We didn't avoid the word "cancer", but we also didn't treat the word as though it had a lot of power. It was just a fact.

We covered the important bases: The doctors will give me strong medicine that will make me sicker before I get better. I might lose my hair and get skinny.

Progeny the Elder cannot stand to see or hear people vomit. She asked if the medicine was going to make me hurl. "Maybe," we said. She cringed. "But they have medicine that will help me not hurl."

And that was it! The progeny are informed but not (too) scared. Exactly what we wanted. We give ourselves a Gold Star.

Thank you for the web page, Dana Farber. It was just what we needed.


OK, so the three-day weekend was over and we were expecting a call today with the pathology report from the biopsies.

The day passed with no call. I was definitely planning to call Doctor B's office on the next day and start becoming a pest. The wait was becoming excruciating.

Then, at 8:45 PM, in the middle of putting Progeny the Younger to bed, Doctor B called.

He started by telling me he was pleased with the report and that it was better then he expected. I grabbed a notepad and wrote down what he dictated from the report verbatim:

Tongue biopsy: "Squamous papilloma with severe dysplasia and small focus of superficially invasive squamous cell carcinoma."

Lymph node biopsy: "Cellular degeneration with necrosis and presence of atypical squamous cells."

Sounds good to me, too. Of course, my mind grabs onto the most positive aspects:

  1. "squamous papilloma" means most of the growth is a wart, not yet cancer
  2. "small focus" means the cancerous portion is small
  3. "minimally invasive" means the cancer hasn't invaded the nearby tissue much

The "severe dysplasia" portion is not concerning. That means the cells are abnormal but are not (yet) cancerous. Dysplasia is completely expected in this case.

Remember, those are my own interpretations.

I apparently didn't take good notes on the meaning of the Lumpy the Lymph Node's biopsy. I don't know the implications of "cellular degeneration" or "atypical squamous cells" in that context of a lymph node and Google hasn't been much help. Can't be good whatever it is.

For most patients that phone conversation might be the only time the patient hears the pathology. The doctor speaks a bunch of jargon into your ear and you worry only about what to do about it. But me? I like details and I want to read it for myself.

One is always free to request the written records from one's doctors. I did so. Doctor B's staff was kind enough to make copies for me and I swung by Doctor B's office to pick them up. Here is the complete pathology report, with surrounding patient identification information removed:





Received in three parts
A. Received fresh labeled [name] and "base of tongue mass", is a 1.0 x 0.5 x 0.1 cm aggregate of soft pink/tan tissue frozen and submitted as FSA1.
B. Received in formalin labeled [name] and "base of tongue mass foundation", is a 2.5 x 1.5 x 0.3 cm aggregate of rubbery glistening blood tan/pink tissue and blood clot entirely submitted in B1-B4.
C. Received in formalin labeled [name] and "base of tongue mass", is a 2.0 x 1.5 x 0.2 cm aggregate of rubbery glistening tan/pink tissue and blood clot submitted intact in CI and C2.

The report is structured a little strangely but it's simpler if you start at the bottom in "GROSS DESCRIPTION": that section describes the physical characteristics of three separate samples that were taken from the base of my tongue during the biopsy. Those three samples are named A, B and C. A is small and B and C are pretty large (roughly one inch long and 3/4 inch wide). "Fresh" means just that - the sample was delivered to the lab like fresh meat. "In formalin" means that the samples were "fixed" with formalin as a way of preserving the tissue. Formalin is a form of formaldehyde. It causes chemical changes in the cells that prevent them from decomposing so they retain the structural characteristics they had when the cells were living.

Then you can go back to the top of the report and read the "FINAL DIAGNOSIS" section, which includes results for each of samples A, B and C. There's an additional piece of good news there: Sample B results include "IMMUNOSTAIN FOR PI6 SHOWS DIFFUSE/STRONG POSITIVITY." If you remember from this post, HPV strain P16 is one of the bad strains that cause cervical and oral cancers. But P16 is also what hopefully puts me in the 80% cure rate category that we're pulling for.

I didn't realize until a week later when writing this post that I didn't receive the pathology report for Lumpy the Lymph Node. What I have is a copy of the summary that Doctor B reported in writing to Doctor W (my primary care physician). That's exactly the same as above:

Lymph node biopsy: "Cellular degeneration with necrosis and presence of atypical squamous cells."

That's a little concerning, but not too much. I'll explain specifically why in another post very soon, but the same previous post also mentions that the 80% cure rate stands even though these cancers are typically discovered after they have spread.

We'll see.

In our phone conversation, Doctor B told me that he see three possible paths forward:

  1. He can perform surgery and take out Lumpy the Lymph Node and possibly the tongue growth (which, by the way, we can now christen with a name: "Pappy Papilloma". Welcome to our story, Pappy!). I didn't note what the follow-up would be after surgery in this plan.
  2. Seek the opinion of an oncologist of my choice. Specifically explore whether there is a no surgery option and also whether there are targeted therapies for my cancer. I'll explain what a targeted therapy is in a future post on cancer genetics.
  3. Even though Doctor B thinks robotic surgery is often oversold, in my case given the location he thinks it might be an option. He will refer me to a doctor at the Massachusetts Eye and Ear Infirmary (a research hospital in Boston) who both specializes in papillomas and related cancers and is trained in robotic surgery using the most popular surgery robot, Da Vinci.

I'll pursue options 2 and 3 immediately.

Monday, May 27, 2013

Taking It Lying Down

Our family's favorite outdoor place near Boston is Massachusetts Audubon's Ipswich River Sanctuary in Topsfield. Some friends introduced us to it several years ago and we have been back many times since, in all seasons. The Progeny never fail to enjoy their time there. And I never fail to feel great peace while walking the trails through the swamp and forests.

Among the facilities there is a small rustic cabin that can be rented by Mass Audubon members for a nominal fee. We had never done it. In some moment of brilliance last week I called the sanctuary to see if by chance the cabin was available for one night of the 3-day weekend. It was! The Progeny were psyched.

We arrived in the late afternoon yesterday and moved in. Then we went for a lovely hike. The Progeny's favorite place lately is a narrow footbridge over a pond. They each find a stick and then can spend an hour or more just snagging debris from the pond bottom and making little piles on the bridge.

When it got dark (but not completely dark) we took the Progeny for a hike through the woods. We were hoping to see an owl. This was the first time the Progeny had ever been in a forest at night. They were pretty scared. But they each had a flashlight and we held their hands and pushed on.

Along the swamp trail we heard beavers splashing warnings to each other. Then from the Old Stone Bridge we saw a beaver swimming silently across the pond. Wonderful Wife and I thought it was exciting. The Progeny were momentarily distracted from their fear but not for long.

This morning I woke up at little after 7:00 AM and everyone else was still asleep. Unusual. I managed to dress and sneak out without waking anyone. Then I went for hike.

The sanctuary was even more peaceful than usual. I made my way down past the Old Stone Bridge to the platform that was built out in Pintail Pond.

I lay down on the platform and closed my eyes. The view was brilliant red with the morning sun lighting my eyelids. Woodpeckers were performing percussion movements - pecking on different parts of the tree so that the pitch of the pecks covered a range from deep and hollow to high and hard. My favorite birds here, the Redwing Blackbirds, were having their raspy conversations. The doves were cooing to each other.

I found myself imagining the future. I envisioned being with the Progeny, now 7 and 9, as they grow older: graduating college, starting careers, having families of their own. I plan to be around for it. And Wonderful Wife and I have dreams of travel and adventure. We both love to Road Trip. I have to live to retirement so we can enjoy more time for that.

This was just what I needed. Natural beauty always soothes me. And the future with my family is the carrot that I will chase through what is coming.

When I got back to the cabin everyone was awake but relaxing. We had a light breakfast and moved out of the cabin. Then we went on a two-hour hike, including parts of the sanctuary we had never visited before. Amazingly, the Progeny made it without too much complaint. By the end I was feeling recharged.

Renting the cabin really was a brilliant idea.

Friday, May 24, 2013

Delayed Gratification

Friday evening.

I was really hoping to hear the pathology results before the 3-day weekend, but no such luck. I meant to call Doctor B's office around 4:30 to check but I got busy and forgot.

The weekend looks very long stretched out before us. We feel suspended and helpless and too distracted to focus on even little decisions like what to have for dinner.

Thursday, May 23, 2013


This has been quite an emotional rollercoaster.

When Doctor W told me over the phone that my CT scan indicated a suspected malignancy, my first thought was of course, "I'm going to die." My next thought was, "How does one live without a tongue?" Followed immediately by fear of leaving my two young daughters and Wonderful Wife.

That initial fear was bewildering and, at first, overwhelming.

Then we had the possibility of infection mentioned by Doctor B after his exam. Followed by the disappointment when antibiotics had no effect.

During this time I was intentionally avoiding looking up information on tongue cancer. Most cancer types have multiple sub-types that can have widely varying prognoses; I didn't need to go read about the scary ones, or get my hopes up that I had a more curable one only to get worse news later.

One day I was curious what kind of instrument is used for the tongue biopsy. I was curious because Doctor B had told me that I wouldn't require any sutures and would only be sore for a few days. I couldn't envision how one could collect enough tissue, especially from the interior of the growth, with that little injury.

While I was looking that up I accidentally clicked through to this NIH page on oral cancer, where I read this in the Prognosis section:

Approximately half of people with oral cancer will live more than 5 years after they are diagnosed and treated. If the cancer is found early, before it has spread to other tissues, the cure rate is nearly 90%. However, more than half of oral cancers have already spread when the cancer is detected. Most have spread to the throat or neck.

About 1 in 4 persons with oral cancer die because of delayed diagnosis and treatment.

Yikes. 5-year survival is the measurement of the "curability" of a cancer type and 50% 5-year survival is not so good. And I've got Lumpy the Lymph Node threatening to be an indication of spread. I did not need to read that.

Doctor B had made two remarks to me, one after the initial consult and another after the biopsy, that he expected this to turn out to be squamous cell carcinoma. I allowed myself to go read about that specific type. I was interested to read the risk factors:

  • Smoking or heavy alcohol use
  • Chronic irritation (such as from rough teeth, dentures, or fillings)
  • Human papilloma virus (HPV) infection
  • Taking medications that weaken the immune system (immunosuppressants)
  • Poor dental and oral hygiene

By process of elimination I have only one of those risk factors: possible HPV infection. I told Friend Britt that fact in one of our emails.

The next day Friend Britt told me she had found an interesting article and asked if she should forward it to me. The article is from UpToDate, "the clinical decision support resource" available to health care professionals, and discusses HPV-associated head and neck cancer. Here are some highlights:

...many patients with oropharyngeal squamous cell carcinomas, particularly those arising in the base of the tongue and in the tonsillar region, do not have any of these risk factors. Epidemiologic and molecular studies have identified the HPV-16 genotype of human papillomavirus (HPV) as a causative agent in these patients...

...Multiple clinical studies have demonstrated that the prognosis for patients with HPV associated oropharyngeal cancer is significantly better than that with HPV negative cancer of a comparable stage...

...Overall survival was significantly better in patients with HPV positive tumors compared with those that were HPV negative (three-year survival rate 82 versus 57 percent)...

In [one randomized trial], patients were treated with radiation therapy plus concurrent cisplatin, with or without the radiosensitizer tirapazamine [16]. HPV status was assessed in 172 of the 465 patients with oropharyngeal cancer. Using p16 positivity as a surrogate for HPV positivity, two-year overall survival was significantly improved (91 versus 74 percent, HR 0.36), as was the failure-free survival (87 versus 72 percent, HR 0.39). Patients with p16 positive tumors had lower T stage (T1-T2) and more extensive nodal disease (N2-N3) compared with those with p16 negative tumors (37 versus 15 percent and 86 versus 65 percent).

There's a fair bit of jargon in there. Let's start by letting the National Cancer Institute (NCI) summarize the relationship between HPV and cancer:

  • Virtually all cervical cancers are caused by HPV infections, with just two HPV types, 16 and 18, responsible for about 70 percent of all cases. HPV also causes anal cancer, with about 85 percent of all cases caused by HPV-16. HPV types 16 and 18 have also been found to cause close to half of vaginal, vulvar, and penile cancers.
  • Most recently, HPV infections have been found to cause cancer of the oropharynx, which is the middle part of the throat including the soft palate, the base of the tongue, and the tonsils. In the United States, more than half of the cancers diagnosed in the oropharynx are linked to HPV-16.
  • The incidence of HPV-associated oropharyngeal cancer has increased during the past 20 years, especially among men. It has been estimated that, by 2020, HPV will cause more oropharyngeal cancers than cervical cancers in the United States.

So the UpToDate article focuses on HPV-16 because that is one of the high-risk strains, and specifically the one most associated with oral cancers in men. And assuming mine is HPV+, the UpToDate article says that the prognosis is much better than the HPV- type, even if discovered in an advanced stage. That's good news.

We wandered a little far there but this relates back to the emotional path Wonderful Wife and I have been travelling. This information provided a little boost.

Who would have ever thought I would hope to have a sexually transmitted disease‽

But then it was back to waiting. I can surmise all I want that it is squamous cell carcinoma and that if so it is likely to be HPV+, but it's really only guessing until we get our hands on those all-important pathology results.

Workin' It

It's not uncommon for me to wake up at 5:00 or 5:30 AM and have my mind turn itself on and start working all kinds of problems. They can be work issues, house projects, parenting... Whatever. And often randomly intermixed.

This morning it decided to repeatedly envision the most horrible possible treatment side effects: a severely burned throat that is on fire with pain, and the only way to address the pain is to swallow large pills.

Thanks, Brain.

Tuesday, May 21, 2013

Happy Birthday! Have a Nap.

It so happened that when I consulted the otolaryngologist, Doctor B, back on May 10 and we determined a biopsy was necessary, Doctor B's next available surgery date was May 21. My Birthday.


Because he needs to dig around at the back of my tongue and if he did that while I was awake I would "yack all over him" (his words), we have to do it under general anesthetic. So today I went to the local hospital for "Day Surgery".

The prep protocol was pretty simple: don't put anything in my mouth after midnight the night before. Not even water (which seems pretty weird). Then be at the hospital at 10:15 AM for a 12:50 PM procedure.

So we celebrated my birthday with cake a day early.

When I checked in there was of course some paperwork to fill out. After a bit in a waiting room with other patients and family members a nurse took me into an exam room and did the usual blood pressure/pulse/temperature thing. Then she gave me a nice new outfit to wear: gown, scrub pants, slipper socks and a robe. Don't I look handsome?

Then back to the waiting room for an hour or so. It occurred to me that they probably schedule this way so that if a surgery is cancelled the next patient is already present and prepped and they can fill the gap and prevent the surgical team from being idle.

Finally it was my turn to go to the pre-op area. I said good bye to Wonderful Wife; she'll return in 3-4 hours to retrieve me.

The preparation materials the hospital had given me told me that I would be asked my name and birthdate many times during my short stay. They were not lying. Probably 15-20 times. That's just fine with me. I don't want them taking out my kidney by mistake.

A very sweet nurse came and set up my IV and put on a bag a saline. I started mentally tallying my puncture count, because I'm pretty sure by the end of this whole cancer thing it's going to be kinda big.

During my time in the pre-op area all of the members of the surgical team came by one at a time to introduce themselves and ask me a different set of questions. They were all quite friendly. Except for the anesthesiologist. She was kinda grumpy.

I love to observe systems and discern how they work. I was situated in a great place in the pre-op area for that. Right across from me was a door marked PACU. For some reason it is marked as such with four individual magnetic letters stuck to the top of the door frame. I watched unconscious people wheeled past me and into that room periodically so I figured it's a recovery room. I asked the nurse at one point what PACU stands for. "Post-anesthesia Care Unit."

Near the foot of my bed was a cart with a computer monitor on top. After watching my anesthesiologist and a couple of other people us it, I figured out that it is a portable pharmacy for securely dispensing narcotics. She logged in and typed some stuff, and then one of many small drawers in the cart below the monitor would pop open containing a single syringe. Those meds are popular with the Michael Jacksons of the world, so they are tightly controlled. I thought it was fascinating that there is a special cart for that.

Doctor B came around for a chat, accompanied by Medical Student. We reviewed what he was going to do. I reminded him of my request to get enough tissue for sequencing, which was a good thing because he had forgotten. I gave him Foundation Medicine's URL and told him how to find the sample collection guidelines. He and Medical Student went off to read that.

Finally it was my turn. The very last thing they had me do was sign consent for the procedure. Then the anesthesiologist injected her syringe into my IV and they started wheeling me toward the OR. I was mentally tracking the effects of the drug. I felt completely aware for about 20 seconds while they wheeled me past the pre-op nurses' station and passed through the door into the OR. Then things got foggy and I barely remember moving from the gurney onto the operating table. Then it was lights out. Maybe 30 seconds total from injection to loss of consciousness.

The first time I woke up it was 2:55. I was in the PACU. My own personal PACU Nurse was at my side. Then lights out again.

I woke up again 10 minutes later and then fell back asleep. 10 minutes later I woke up again and this time stayed awake longer. There was a mask strapped to my head delivering water mist. Finally by about 3:35 I was awake for good. That waking process was mildly unpleasant. Kind of like when a limb is asleep and it won't wake up as fast as you'd like.

I noticed that even when PACU Nurse wasn't at my side she was sitting across the room but watching me closely. I eventually figured out that there was a 1:1 ratio of PACU Nurse to patient in this room. My PACU Nurse only watched me.

Doctor B came by to talk to me about the procedure but I was only semi-conscious and barely remember it. The only thing I remember is that he told me he took plenty of tissue for sequencing.

At 3:55 they moved me to a less instrumented and staffed recovery room and installed me in a comfy chair and called Wonderful Wife to come retrieve me.

I thought I was feeling pretty normal but that was only until I started moving. Even just the wheelchair ride to the exit made me a little queasy. By the end of the 10-minute ride home I was feeling pretty bad. We stopped and got a milkshake on the way and I think that didn't help. It would be 8:00 PM before I felt normal again.

Here are some souvenirs:

Now the wait begins. I expect the pathology results will be available in two or three (Thursday or Friday).

Saturday, May 18, 2013

Seeing the Life

First of all, Dear Reader, let me apologize for the title of the last post. I just publicized the blog to a much wider audience today and what did they see when they first visited? "Hopes, Shattered." What a welcome!

Let me assure you that title was only a hyperbolic device employed for thematic effect.

I knew there was very little chance that a radiologist would mistake a sinus infection for cancer. But I thought it was interesting how my mind was willing to grasp and amplify that vanishingly small probability, as evidenced by my mild but clearly felt disappointment when it did not eventuate.

Editor: Sheesh, who is this guy using fancy words like eventuate?

I swear, that's the first time I have ever used that word. It just popped into my head. I thought I was making it up but it's a real word!


Today's topic is the biopsy. The word stems from two Greek roots: bios, meaning "life" and opsis, meaning "to see". That's exactly what it means: to remove cells from a living organism and look at them, traditionally under a microscope, to determine their type and properties. These days the tissue removed during a biopsy is used for many other purposes besides visual examination but that is still the core use.

The biopsy procedure itself can take many forms. In my case I will have two biopsies at the same time: the otolaryngologist will take samples from the growth on the back of my tongue using normal surgical instruments. And he will also perform a Fine Needle Aspiration of the adjacent Lumpy the Lymph Node: he will insert a needle into the node and then use a syringe to withdraw ("aspirate") some of the cell soup contained therein. Both tissues will then be sent to the pathology lab for analysis. It is the shape, size, location, organization, proportion and other properties of these collected cells that will tell me and my doctors exactly what is going on.

Biopsies are used in many, many illnesses to assess what is happening biologically. But I think in cancer essentially every suspected tumor is biopsied as one of the first steps in the diagnostic process.

Soon I'll write a post about "personalized medicine" and how genetic sequencing of tumors is one of the early successes that fall under that name. Lots of research institutions and hospitals have begun using sequencing of specific genes in tumors to try to understand which patients will respond or not to specific treatments based on the individual collection of mutations each patients' tumor carries. Some of the scientists I work with do exactly that in the research phase.

For now, suffice it to say that I wanted my malignancy sequenced. There's a year-old company in Cambridge named Foundation Medicine that is among the first to offer tumor sequencing as a service: in the form of a lab test that one's doctor can order like any other test. They obtain tissue from the pathology lab, extract the DNA from it and analyze it. Then they send your doctor a comprehensive report that highlights the specific mutations that have an impact on that patient's treatment, treatments that are most likely to work for that patient, and clinical trials that involve new drugs that target that patient's mutations.

One thing I like about Foundation's test is that they have identified a set of just over 200 genes that are known to be important in cancer and which are known to have specific impact on treatment. I.e. they aren't fishing for every possible mutation and trying to understand what it means. That's too noisy.

I referred my otolaryngologist, Doctor B, to Foundation's website to consult their sample requirements and requested that during the biopsy he collect extra tissue to satisfy those requirements.

But let's get back to the main purpose of the biopsy: finding out what exactly is growing in my throat and neck at a cellular level.

That work is done by a pathologist, an MD who specializes in examining tissues and making diagnoses. In my case the pathologist will take the tissue collected during the biopsy, slice it very thinly, and place the slices on microscope slides. S/he may use stains, which are chemicals applied to the slices to highlight specific aspects of structure, or the presence (or absence) of specific proteins or other molecules.

There are other more complicated tests that can be applied to tissues. For example, to look for some proteins the lab will use immunohistopathology or immunohistochemical staining. Impressive words! The immuno part means they use antibodies (which are part of the immune system). The histo part refers to tissue. You now know what pathology means (by the way, it comes from pathos, meaning "suffering" or "disease" and ology, meaning "study of" or "science of").

Immunohisto- techniques take advantage of the fact that antibodies are very specific about the proteins they will stick to, and when they find that protein they stick to it strongly. Imagine if iron came in different flavors and there were different magnets that would attract each type of iron specifically. That's what immunohistochemical staining does: the proteins whose presence you want to determine are special kinds of iron and the antibodies are the matched magnets. Chemically attach some dye to an antibody, apply the antibody to the tissue and viola! The target protein takes on a color that visually indicates its presence.

Here's an example of pathology slides stained with antibodies to indicate the presence of specific proteins:

Pathologists are trained to recognize normal tissues as well as abnormal, and to classify the abnormal tissues appropriately. In my case, since the tongue is a muscle the normal cells should be long and smooth and all lined up in the same direction (think "muscle fibers"). Cancer tends to be chaotic: mixed up wrong shapes, disorganized structure, etc. The amazing thing to me is that pathologists can make these evaluations for any cell type in the body: kidney, skin, lung, spleen - you name it.

Lumpy the Lymph Node, if normal, would contain cells that are part of the structure of the node itself, plus immune system cells that transact business in the lymph nodes: T cells, B cells, dendrocytes, etc. Since mine is swollen, it probably contains either way too many of the cells that would normally be there, or cells that shouldn't be there, or both. The pathologist will quantify and classify the cells that are aspirated and diagnose what is ailing Lumpy.

We will anxiously await the pathology report after the biopsy. It will take at least a couple of days. Everything hinges on that report as it will confirm the preliminary diagnosis of malignancy, identify the specific type of cancer and ultimately determine many aspects of the treatment that is in store for me as well as my prognosis.

I think most people know what prognosis means, but just in case let's go back to Greek: pro, meaning "before" and gnosis, "to know". So, "knowing beforehand". In cancer it means "are you going to live", and if not, "how long do you have". It's a prediction, so obviously it's not exact. But there is a lot of treatment history to go by so a cancer prognosis is based on statistical analysis of outcomes of prior cases of the same type.

Given all that is riding on the pathology report, the wait for it is going to feel long.

Thursday, May 16, 2013

Hopes, Shattered

We all knew it couldn't be just a sinus infection, right? That would bring our tale to a premature conclusion. And my boss would think I lied about having cancer just to get a three day weekend!

Alas, the globus-like sensation has returned. Or perhaps it was never gone - that was only wishful thinking. And Lumpy the Lymph Node has gotten noticeably firmer. Apparently he likes me, and he's not going anywhere.

Advance the reality ratchet a click or two. With its partner: fear. I hadn't realized quite how much I was rooting for that sinus infection plot line.

The biopsy surgery is still five days away. It feels like forever. Life is in slow motion suspense until we can liberate those cells and hear their story. Only they can confirm whether they are indeed cancer, and tell us the name of their tribe. And my fate.

I've been going to work all week and, surprisingly, being productive. I sit in meetings with people and marvel that no one seems to notice my new friend Lumpy. It shouldn't surprise me. I didn't notice it either.

Editor: Oh, c'mon. It's not that bad. Don't you think the title is a tad melodramatic?

Wednesday, May 15, 2013

Ships That Pass in the Night

As a prerequisite for the general anesthesia required for the upcoming biopsy, I needed to have an EKG. They said I could just drop by the hospital any day before 10 PM to have it done. I dropped by about 8:00 PM and found that it wasn't necessarily true. Cardiology Tech might have gone home early. Fortunately, Nice Registration Lady was persistent and she was able to track down Cardiology Tech.

When Cardiology Tech and I were finally alone together, I took off my shirt. Cardiology Tech swooned at my hirsuteness.

"Oh, my," she said, "You're hairy. Do you mind if I shave you?"

Women don't ask me that every day.

"Sure," I said.

She dry shaved artistic patches on my chest. She lovingly stuck a profusion of leads to my waiting skin.


The machine hummed. I almost fell asleep.

Sadly, after about five minutes our time together came to an end. Cardiology Tech peeled off the leads one by one. Like heartstrings.

I dressed. I said good bye.

I don't know if I'll ever see Cardiology Tech again. In the photo you can see the scars that this relationship left me with. I surrendered a piece of my heart to her, recorded on floppy disk.

Tuesday, May 14, 2013

Wanna See My Vacation Slides?

One cool development in medical care in the past few years, especially for a geek like me, is that when you have medical imaging performed they will usually give you the images on a DVD. They did so for Progeny the Elder when she broke her arm recently. And they did it for me after the CT scan of my neck. I dropped by the hospital tonight and picked up the disc.

It came with a bonus: a copy of the radiologist's final report. Remember, all I had see up to this point was the "wet read" - the preliminary report that the radiologist sent to Doctor W immediately after the scan.

Here, for your reading pleasure, is the report (click to embiggen):

I'm not sure which terminology will be confusing to readers. Please feel free to ask questions in the comments and I'll do my best to explain the lingo. But at a high level what it says is that the anatomy is not normal and given the radiologist's training and experience the shapes that s/he sees are indicative if a malignancy.

The report mentions suspicion that the uvula might be involved. Doctor B, the otolaryngologist, took a good look at in my initial consult with him and remarked that it was clear.

In this post I described how a CT scan works and that it generates a 3-dimensional grid of data. And that one can then pass imaginary slicing planes through that grid to produce 2D images that look like x-ray films taken from arbitrary angles. With the difference that when you look at a traditional x-ray film you are looking at the radiation that passed through the entire thickness of the body part that was imaged while in a slice through CT data you are looking at an actual slice a few millimeters thick. Like bologna.

The DVD for a CT scan conveniently came with software that enables a user to navigate through the 3-dimensional space, i.e. to move the slice planes around through the data volume. I used that software to extract the images below.

This image is a slice through my head, roughly parallel to the ground if I were standing up. If you remember from the CT explanation, that's called the transverse body plane. This slice passes through the lowest part of my jaw. You are looking up through my chin.

The yellow markings were made by the radiologist to measure Lumpy the Lymph Node. Lumpy is that big round grey thing under the yellow marks.

The green circle was added by me and highlights the back of my togue. The black arc shape is my throat. It's black because there's nothing there to absorbe the x-rays: density = 0. Protruding into my throat is our guest of honor, the growth on the back of my tongue. Remember the bumpiness of it. I can't spoil the suspense by telling you just what it is yet but we'll get there. I'm going to have to give that guy a name, too.

Repeat after me: "Click to embiggen."

The next image is mainly for curiosity. I have a dental implant at tooth position 29 (lower right mouth quadrant). The implant itself is a titanium screw. That titanium screw acts like a mirror ball when all those x-rays are fired at it from different angles. You can clearly see the flare from the mirror ball in this image.

You may now play radiologist and make your own diagnosis in the comfort of your very own home.

C'mon Sinus Infection!

It seems like the globus sensation in my throat is a little better. Perhaps the antibiotics are working and it really is only an infection?

I have a dear friend Britt who is a nurse practitioner. Earlier in her career she was an oncology nurse. Britt is wise. Britt knows me very well. I share everything medical with Britt. She's known about this since the first day I went to the doctor.

Britt joins me in rooting for a sinus infection.

Sunday, May 12, 2013

Doing a Geographical

We already had plans to visit my good friend Bill in Hoboken, NJ over the weekend. Wonderful Wife and I decided to stick with the plan. There was nothing we could do about my diagnosis and the trip would be a good distraction - keep us from hanging around the house stewing in our worry all weekend. Plus The Progeny were excited to see Bill's kids and visit a playground they love in Central Park.

We left the playground just in time as a big thunderstorm arrived. We got to watch a fantastic lightning show over the Hudson River through our windshield while driving to Hoboken. Bill's son showed Progeny the Elder some new Minecraft tricks and we had a nice dinner and kicked around Hoboken in the evening. On the drive back to Boston we stopped at the Pez Factory and Dinosaur State Park. All good distractions. Mission accomplished.

I had thought I might give Bill the news during our visit but an opportunity never arose.

Friday, May 10, 2013

A Closer Look

[Written on May 28 from diary notes written May 10]

The otolaryngologist, Doctor B, is a calm, friendly, no-nonsense guy. I liked him immediately. Although in this situation any doctor who looks at me feels like a lifeline.

Doctor B lived up to the name of his specialty: he looked in ears, nose and throat in that order. He declared that my uvula, which was mentioned as possibly involved in the CT report, was clear. One piece of good news. Then he used a mirror to look down my throat at the base of my tongue. Very carefully, so I wouldn't yack on him. That was his term.

Yup. There’s a “swelling” at the base of my tongue, in the center. We’re going to need to do a biopsy.

He also mentioned that there was pus in my throat. I have had many sinus infections in my life so that wouldn’t be a surprise. He prescribed an antibiotic and seemed to hold out some hope that this was just an infection.

His next available date for the biopsy was May 21. Eleven days away - that feels too long. It’s also my birthday.

I filled the antibiotic prescription on the way home and took the first dose minutes later.

The Fun Begins!

[Written on May 28 from diary notes written May 10]

Doctor W, my primary care physician, called me at 7:45 AM.

Apparently the radiologist communicated the “wet read” (preliminary results) to my doctor almost immediately after the CT scan. It was Doctor W's day off and late in the day, so she waited until first thing this morning to call me. She got right to the point, telling me the news was troubling.

She said a lot of words but after the call all I could remember was “Suspected malignancy near the base of the tongue.”

I was half expecting that but it’s something you never want to hear. I could tell it was not the highlight of Doctor W’s day to have to deliver the news. She said her office would arrange an appointment with an otolaryngologist as soon as possible, hopefully that day.

We were getting the girls ready for school and I was about to get on my bike to work when the call came. Wife knew what it was - we haven’t been talking about it a lot since we were both taking a wait and see attitude. But we were both concerned about the potential diagnosis. I gave her the thumbs down sign. We held each other for a minute while the girls were upstairs but I fought back the tears. I really wanted to hold it together until they were at school.

We had a pleasant walk to school and I managed to act normal and happy. When I got home I could start to process it a little. By that I mean I cried.

Phew. Tough news.

Wife and I talked about possibilities but we both still felt like we needed to wait and see. Imaging is not perfect. It can see that something is not shaped like it should be but can't definitely say what it is. Although radiologists are trained to make judgement calls based on what they see.

I emailed work to say I was taking a sick day. I emailed my boss separately and told him the news.

How the hell do you live without a tongue? That was my first question. But I avoided looking up information about tongue cancer. I'd rather not fill my head with scary info when that diagnosis isn't confirmed.

Wife and I sat close to each other and talked all morning. I cried a bit. She didn't, amazingly. She gets it from her mom. One step at a time. Let's find out what it is first and then she'll deal with the specifics.

As you can imagine, hearing the news knocked me off balance. Last week life was great. Now I have to figure out whether I'm going to live. I felt plenty of fear, of course. I'm of a generation in which cancer equalled doom. Much progress has been made during my lifetime, though. Some cancers, especially pediatric cancers, are now considered curable. Many others are survivable and treatments are improving all the time. So first I have to deal with that automatic perception that this is going to kill me. Then there's the fear of treatment. Snarky blog titles notwithstanding, cancer treatment is most definitely not fun.

But I'm going to call it fun! That's my form of rebellion against cancer's tyrannical lottery. Because there's a pot of gold at the end of the chemotherapy rainbow: watching The Progeny grow up and then growing old with beloved Wife.

Around midday my doctor’s office called to tell me I had an appointment with a nearby otolaryngologist at 3:30. He would take a closer look and investigate what was seen on the CT scan.

Thursday, May 9, 2013

Beam Me Up

[Written on May 28 from diary notes written May 9]

The CT scan was this afternoon. They used an intravenous contrast agent. The scan itself was pretty quick; I think I was in the machine for maybe 5 minutes.

This was the first time I've ever had a CT scan. I was fascinated by the machine. I learned about CT machines back in the 90s when I worked for a scientific visualization software company and did a lot of demos and consulting with CT data. I think in earlier generations of machines the x-ray sources and detectors were distributed around a stationary ring. But in this machine (Damn! I didn't note the make and model!) the ring rotated very rapidly during the imaging phase.

The radiology nurse told me results would be sent to my doctor within 48 hours.

Teck Talk:

Hey, it's our first opportunity for a Tech Talk! This is a regular feature of Cancer Fun Time! in which I'll explain how some piece of medical technology or procedure works.

A CT scan and CAT scan are the same thing. CAT stands for Computed Axial Tomography, but the "axial" part is not important so it is often referred to as just "CT".

To vastly oversimplify it, what CT does is take a large number of x-rays from many different angles all at once. The geometry of the radiation sources and the radiation detectors is known, so geometry and trigonometry (plus some rather complicated physics and math) can be used to process all those "images" and map the results to a regular 3-dimensional grid. Since x-rays basically measure density, you end up with a 3-dimensional grid of density measurements. Bone is about as dense as it gets for human tissues. Air is as undense as it gets. Soft tissues have various levels of density in between. When you assign a color scale to density, with bone=white and air=black and shades of gray in between, you get images that look like traditional x-ray films.

Given that you have that 3-dimensional grid of densities, you can use algorithms to "slice" the volume on any plane you wish. So instead of having just a flat 2D image like a conventional x-ray, the radiologist can move through the volume of the patient's body looking at any "cutting plane" he or she desires. In practice they tend to use standard cutting planes, called sagittal (the vertical plane formed by your flat hand held up edge-n to your nose), coronal (the vertical plane that would pass though both your ears) and transverse (the horizontal plane formed by your flat hand held edge-on in front of both your eyes). But then imagine being able to move any of those planes in the direction perpendicular to the plane.

CT scans are often performed with a contrast agent. A contrast is a fluid injected intravenously just before the scan. It contains a substance, such as iodine, that will diffuse differently into different tissue types and make it easier for the radiologist to see boundaries between different tissue types or structures. It does just its name implies: it enhances image contrast. For my scan I received a contrast called Optiray 350.

Monday, May 6, 2013

Is That A Lump In Your Neck Or Are You Just Glad To See Me?

[Written on May 28 from diary notes written May 6]

For the past month or so I’ve had a sensation that there was something in my throat. It was making me slightly more prone to choking but mostly it was just bothersome. In 1995 I was diagnosed with a temporary condition called globus pharyngis or just "globus". The main symptom is the sensation of something in one’s throat. It is often psychosomatic; caused by stress. Although it can also be an indication of gastric reflux or cancer.

Oh, crap! Spoiler Alert!

In 1995 my globus resolved itself within a few weeks. I originally thought this was just another occurrence of it. But after it had gone on for a month or so I decided to have it checked out. One of the deficiencies in my manhood is that my medical denial is not very strong.

I described the symptoms to my doctor, Doctor W. I told her I didn't feel especially stressed and I have no history of reflux. I joked that the only remaining option was cancer.

She took all that in with a chuckle. Doctor W has a good sense of humor. When I went to her for a physical when I turned 50, she left the prostate exam for last. Then she said, "Neither one of us is going to enjoy this. Bend over."

When I finished my globus story she looked at me for a minute from across the room. Then she asked, "What's going on on the side of your neck? It looks like you have a swollen lymph gland. Can you feel that?" She happened to have a first-year medical student shadowing her that day and she asked him, "Did you notice that?"

It was the first I'd heard of it. I felt it with my hand and it was plain as day: a large lump under the curve of my jaw on the right side. It wasn't especially firm and it wasn't especially soft. She and the medical student described it as "mobile", which I gathered was better than “fixed”. Doctor W brought me a mirror and the thing looked quite obvious. I told her it must be recent. Surely I would have noticed it while shaving? Or my wife would have noticed it? I couldn't believe the swelling was more than a few days old.

Obviously we needed to investigate further with some imaging. Doctor W debated between ultrasound, which would show the thyroid better, and CT which would show the lymph node better. She decided on CT.

At the time I thought that sounded like overkill. A CT scan delivers a pretty significant radiation dose and one doesn't really want unnecessary radiation delivered to one's head. But of course Doctor W knew what she was doing.