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.
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:
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.
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.
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!
Sheesh!
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.
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.
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:
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:
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:
FINAL DIAGNOSIS
A) "BASE OF TONGUE MASS":
B) "BASE OF TONGUE MASS":
- SQUAMOUS PAPILLOMA WITH SEVERE DYSPLASIA AND SMALL FOCUS SUSPICIOUS FOR SUPERFICIALLY INVASIVE SQUAMOUS CELL CARCINOMA.
- ADDITIONAL LEVELS AND IMMUNOSTAIN FOR PANCYTOKERATIN ARE EVALUATED.
- FROZEN SECTION REVIEWED AND DIAGNOSIS CONFIRMED.
- SMALL FOCUS OF SUPERFICIALLY INVASIVE SQUAMOUS CELL CARCINOMA ARISING IN A SQUAMOUS PAPILLOMA WITH SEVERE CYTOLOGIC DYSPLASIA.
- IMMUNOSTAIN FOR PI6 SHOWS DIFFUSE/STRONG POSITIVITY.
NOTE: IN-SITU HYBRIDIZATION STUDIES FOR LOW AND HIGH RISK HPV ARE NEGATIVE. IMMUNOSTAINS FOR PANCYTOKERATIN AND PI6 HIGHLIGHT IRREGULAR NESTS OF SUPERFICIALLY INVASIVE SQUAMOUS CELL CARCINOMA.C) "BASE OF TONGUE MASS":
- FRAGMENTS OF SQUAMOUS PAPILLOMA WITH SEVERE DYSPLASIA.
- ADDITIONAL LEVELS AND IMMUNOSTAIN FOR PANCYTOKERATIN ARE EVALUATED.
OPERATING ROOM CONSULT:
FSA BASE OF TONGUE MASS: SQUAMOPROLIFERATIVE LESION. (MT)
CLINICAL HISTORY: TONGUE NEOPLASM, NECK MASS TISSUE OR ORGAN SUBMITTED:
A. BASE OF TONGUE MASS (FSA)
B. BASE OF TONGUE MASS (BLOCK BEING SENT TO FOUNDATION ONE LABS PER [DOCTOR B])
C. BASE OF TONGUE MASSGROSS DESCRIPTION:
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:
I'll pursue options 2 and 3 immediately.
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.
