Today’s post will not feature any pictures or ‘how to’ sequences. In fact, I’d much prefer it if nobody followed my path. The topic I want to share is not a happy one to relate, so it is perhaps unlikely to attract new readers, and would likely steer away potential clientele, but you never know.
I’m going to write about something rather private which has cast a shadow directly upon every aspect of my life over the past 3 years. I’m not looking to accomplish anything in particular by sharing this, just thinking it would be helpful to some readers to have an understanding of what is going on. I don’t have this as something I need to unburden myself from, more the case is that it seems fair to readers to let them know what has been going on in case they were starting to wonder about the less frequent posting in recent years. After considerable rumination about whether to click ‘post’ or not, here goes….
About three years ago or so – I forget precisely when this all started – one morning while checking my teeth out in a bathroom mirror I noticed a small white patch on the left side of my tongue. It was less than the size of a dime (about 10mm). I’m not sure how long it had been there. It didn’t hurt or affect my sense of taste or even feel odd, and it seemed harmless enough so I kind of ignored it for a while to see if it might just go away of its own accord. However, it persisted, unchanged.
I looked it up online eventually, like anyone else might, to see what could be causing such a symptom, termed ‘leukoplakia’ as I was eventually to learn. One possibility I came across was that it was a form of candidiasis. Since that seemed like a possibility, so I tried a rather brutal diet for a couple of months which was very restrictive of sugar and refined flours, to no avail. No change in the white patch.
At some point later I was at the family doctor’s office to have a bad case of the flu checked out and I mentioned the white patch on the left side of my tongue. The doctor looked in my mouth, expressed concern about the patch, and suggested I see an ear, nose and throat doctor, which I did promptly. That specialist thought that the patch might be due to some slightly rough edges along my teeth and suggested I visit my dentist. That was the first piece of medical incompetence I came across, as it turned out. Why the ear nose and throat specialist would not be aware of what a innocuous white patch might turn into is, well, baffling to me. Their job is to know all about things in ears, noses, and throats, so what gives?
Anyway, I went and saw my dentist, who looked distinctly nervous at the suggestion the patch could be a product of his dental work. After he gave my edge of my lower left molars a cursory smooth over with a tool, the dentist suggested I consult with an oral surgeon. A week later I was in to see that surgeon, who turned out to be younger guy, and an ex-army doctor.
The oral surgeon told me that he needed to biopsy the patch, and then lab analysis would reveal what was going on with the tissue. I consented, thinking biopsy was just going to involve the use of a needle, say, to take a small ‘core sample’ of tissue. That’s not what happened though. Without any warning or preamble, the doctor sliced off a 10mmx10mmx 1mm piece of tissue under local anesthetic, gave me a wad of cotton, and sent me home, without any mention of any need for painkillers.
If you have ever suffered an injury to your tongue, you will know how incredibly painful it can be due to the zillion nerve endings in the organ. One of the most painful things I have ever experienced, and seriously, I would offer up pretty much any other body part in place of my tongue if there was any choice to the matter. There wasn’t however. Why the surgeon would not offer anything or warn me about how painful it would be remains a mystery. I have a high pain tolerance I would say, but this was ridiculous.
A week later the lab findings were back, and according to the surgeon the results indicated the cells in the area biopsied had “mild displasia”. That term meant there was something odd in their cellular dividing. The doctor emphasized though that it was very mild – emphasis mild, and just like a mole on your arm, say, and was something which needed to be kept an eye on and no more. Nothing to be too concerned about. Keeping an eye on the side of my tongue however meant another biopsy 3 months later – not the sort of news to fill me with joy.
As it turned out later, the doctor had misread that lab report, as it actually stated ‘moderate’ displasia. There’s a fair difference between ‘mild’ and ‘moderate’ – in fact the only other category left is ‘severe’. I don’t have any explanation for this error, but it was a significant one for me. I read the lab report many months later and could see the story for myself. Another error was during the second biopsy he elected to use a laser to burn off, or ablate, any remaining portions of the white patch, a decision which was to reduce the ability of other doctors, including one of the world’s leading specialists in leukoplakia, to make their determinations about it later on.
The second biopsy was equally painful to the first, but I was more prepared for that. What I was not so well prepared for was the result of the second biopsy. The doctor came in the room, was clearly a little uncomfortable, and without so much as a ‘how are you?’ told me that the lab result indicated that the cells were cancerous. That was quite a moment when I heard the news, kind of in surreal slow motion if you know what I mean. After the doctor told me the results he said he could no longer help me and that I needed to see a cancer specialist. Bye bye.
Cancer on my tongue. I was stunned by this news as anyone might be. Have I ever smoked or chewed tobacco? No. Have I ever been a heavy drinker? No. Yet, those are the typical habits of people that are more likely to get cancer of the tongue, so why I had developed this condition remains a complete mystery, as far as the doctors with whom I have discussed this matter are concerned. Some people get cancer without having a family history of it or any predisposing factors.
Essentially it seems like my proverbial ball on the roulette of life had landed on an unlucky spot on the wheel. Apparently, cases like mine – people with no pre-existing associated habits developing a tongue cancer – are on the rise these days, and no one knows why.
With the cancer diagnosis, I immediately stopped fucking around with the less than competent local doctors and became a patient at Dana Farber Cancer Institute in Boston. The doctors there are highly professional and highly competent, which made for a nice change. It’s one of the world’s leading cancer centers and I felt I was in good hands.
By this point in time I had become more or less triggered by incompetence at the hands of the medical professionals I had so far experienced in relation to this matter, so I sorely needed a change. I needed to believe in someone’s expertise and skill. Dana Farber provided that.
At Dana Farber one finds a new world, where one is suddenly aware of the enormity of the cancer situation among the general public. Dana Farber is a very busy place, all 14 floors of it. People come there from all over the world to receive treatment for one kind of cancer or another. People from Saudi Arabia, people from China, little kids with their heads shaved, etc.. And on the way to Dana Farber I would drive past the Mass General Cancer Treatment Center, where the parking lot was also unsettlingly full every time I went past. Cancer is an epidemic it seems to me.
I was seen at Dana Farber by a team of three doctors, each with a speciality in head and neck oncology. One is a surgeon, one deals with radiation treatment, and the third deals with chemotherapy. Each is the head of their program within the department of Head and Neck Oncology. After they examined me and looked at the pathology reports on the biopsied tissue, the decision was made among them that the best course of action would be for me to have surgical re-sectioning of my tongue to clear all of the affected tissue. That’s a fancy way of saying they were going to cut a chunk off of my tongue.
At this stage they said I was experiencing a very modest stage one condition, and they thought the likelihood of a cure was excellent. I was told that the cure rate was likely as high as 94% – with the caveat that if you are one of the 6% who does not get cured by the treatment then the statistics don’t really amount to much do they?
I had the surgery on my tongue in the fall of 2017. The recovery was rather hellish in terms of the pain, but I got through without recourse to opiates. I hate opiates, mostly due to their major side effect of constipation, and try to avoid them if at all possible. Usually it is possible if you are willing to put up with a little discomfort. They grafted a piece of skin from my thigh onto the side of the tongue, and surprisingly the skin graft was also very painful. One can understand after such an experience what burn patients must go through, or anyone else needing larger skin grafts.
The doctor told me that the tissue margins around the excised piece of tissue were clear of any displasia or cancerous tissue and they were confident they had gotten everything there was to get. They also felt that the type of cancer I had was not aggressive.
For 9 months afterward sailing was seeming smooth, though my tongue mobility was less than it was formerly and took a lot of work to try and break up scar tissue, as I was fighting against the contraction of the side of my tongue downwards to the floor of my mouth. As of today my tongue mobility is about 80% of what it once was, so it is inconvenient to me but not debilitating. My speech is unaffected, and I can eat fine.
At the 9 month mark I was a couple of days away from my next check up when I woke up to find a noticeable lump on the left side of my neck. A few days later, after another surgical procedure to biopsy the lump, it was determined that the cancer had spread to at least one lymph node in my neck. The doctors at Dana Farber were quite surprised by this development, however they still felt I was curable, and the course of action, after the three doctors consulted with me, was that I would undergo another operation in which lymph nodes would be removed and could be analyzed in a lab.
It’s when you find that even the world’s leading experts in head and neck cancer are surprised by an outcome that your realize that, while they know vast amounts more than I, they certainly do not know everything. If they can be surprised by that, after having been so certain previously, then just how sure can you be about any of their pronouncements?
They don’t just remove the one lymph node with the lump however, they took quite a few out, some for pre-emptive reasons and in interest of reducing later treatment. I ended up having 19 nodes taken out of my neck, along with two small salivary glands under my chin. They also found some damage from one of the cancerous lymph nodes was possibly affecting a vein in my neck, so they cut the vein out as well. Weirdly, I’ve never noticed any difference from the vein having been removed.
The plan was that I would then start a course of radiation afterwards, once I had sufficiently recovered from the lymph node removal operation. However, out of the 19 lymph nodes removed, while only three had cancer, one of those nodes was unfortunately showing signs of cancer externally. This meant they had to become more aggressive in the next phase of treatment. This meant I would now be getting heavy doses of chemotherapy as well as radiation. Oh yay.
What followed was the most brutal and debilitating 2 month period of my life. My wife and I had to more or less move to Boston for each week of treatment, juggling the care of our (now) 3-year old son. Work of course ground to a complete halt. Without the close support of my wife and extended family I don’t know how I would have gotten through, I really don’t.
The function of the chemotherapy I received – there are various types which do different things, so receiving chemo can be for very different purposes depending upon the situation – was simple: to intensify the radiation’s effect. I had radiation 5 days a week for 7 weeks, wearing a bizarre plastic mask while under the treatment machine, a mask that left me looking like Jason from the horror film series, and received three massive doses of the chemotherapy drug Cisplatin , one to start, one in the middle, and one at the end. On the weekend we returned home to recover from the ordeal.
The outcome of all that was brutal physically and emotionally. I lost a bunch of weight. Half my hair fell out, and all of my facial hair, most of which has not come back below my chin line. The surgery left left most of my neck completely numb, including my ears and nape of the neck. Most of those areas remain numb to this day. My neck is always stiff as the scar tissue wants to contract downwards, so I am always having to stretch my neck just to have a semi-normal range of motion.
By the middle of chemo/radiation treatment my saliva had come to taste very salty, and I had no other taste sensations but that saltiness, so it became a no-go to eat and even drinking water became almost impossible after a while. Because of this and the associated rapid weight loss, I ended up having another operation 5 weeks in where they put a feeding tube in my stomach and that was how I stayed alive for the last half of treatment and the three weeks afterwards. By the 5th week of treatment I was so weak couldn’t reliably stay balanced on my feet I had to be in a wheelchair for a spell.
I can’t really write about how this was all for my wife and son and other family members. I just can’t go there in my thoughts without becoming a mess emotionally. Nobody wants to become a burden to others, or be what will be a mark for them as a terrible event in their lives, and no one want to face the real possibility that they will not get to see their child grow up and be a part of their life when that is so very important to me. Those are almost unbearable considerations for me most days. So, here, I can talk about me and what I experienced and that’s about it.
I spent three months recovering from all of that nightmare. I’m permanently scarred and damaged as a result and will never be myself again physically. Still, all the pain had been in service of the idea of being cured, so whatever it takes, right? You do what you have to do to get better, and the doctors gave me the treatment with an intent to cure me.
The feeding tube was at last removed a month after the last radiation treatment, summarily yanked out actually, and the salty taste began to abate somewhat so I could start to eat more normally, though it would be months before any semblance of normality returned to eating. Appetite and eating remains abnormal however for me however. My salivary glands were permanently damaged from the radiation, as a result I perpetually have dry mouth now. I can drink a cup of tea, say, and two minutes later my mouth is like the Sahara. I can eat a meal as large in portion as before treatment, but I really do not ever feel hungry anymore. I eat more like it is simply a function to perform.
The decrease in saliva seems to also have led to a decrease in my appetite. Salivary glands turn out to be more important than one would think. I started out treatment at 180 lb. and finished at 158 lb. I hadn’t been that light in weight since around 14 years of age. Recently I dropped to 149 lbs., which broke my heart to see on the scale. Some people cry for joy to see low numbers on a scale, I cried in anguish.
Three months after the last radiation treatment, I had a PET scan, which would show if the cancer had been eliminated or not. After the scan, a week passed and I went back to Dana Farber with my wife to find out the results, thinking I was going to see the chemotherapy oncologist. Instead, all three main doctors suddenly came into the examination room, which was not what I was expecting, so I started to wonder what it might mean.
They told me that the PET scan had shown I was totally clear in my head and neck, all good…however there now were “suspicious nodules” in my lungs. They said that if further examination proved those nodules were cancerous, I was now stage 4 and no longer curable. Treatment going forward would now be palliative. That was a pretty tough day, let me tell you. Just bad news on top of bad news. The offered immunotherapy as a next step, but you could tell from the way they spoke that they didn’t have high hopes about it.
A few days later I went in for yet another surgery under general anesthesia, a biopsy on my lung to confirm the PET scan findings. That operation wasn’t too bad compared to all the previous slicing and dicing and I made a solid recovery in about a week. I didn’t take any pain killers either, thanks to a fantastic new drug they are using at the time of surgery, which lasts for many days. My wife has a good health insurance plan which makes such things possible, for which I am incredibly grateful. For most Americans, with lesser insurance plans, they get prescribed opiates, and we all know the current situation with that in this country.
Another week later and the results from the biopsy were in. Yup, cancer was in my lungs now. Another faint hope dashed.
My father smoked his whole life and was getting obese the last time I saw him, yet into his 70s suffered no cancer. There’s no cancer history in my family as far as I’m aware. I’m the healthy one my whole life, who had been athletic in my youth and ate pretty well, drank a bit but never heavily, and yet I get lung cancer. Yeah, life isn’t fair, and the universe, as such, doesn’t care.
What was left for me now was a low-percentage play called immunotherapy. The good news is that I have been able to receive this treatment at a local hospital and no longer have a 2-hour drive into Boston to contend with.
I started with a drug called Nivolumab, which, in the 15~20% of patients that respond to it, does wonders and has relatively low toxicity, and promises durable action. That’s why they tried it first. In concert with that I’ve been on a high (soluble) fiber diet in the interest of improving my body’s immune system. I also take Turmeric capsules and CBD. The doctors, of course, never make any mention whatsoever of diet, something I always find a bit curious, but if there were some miracle dietary cure for cancer that really worked, you can be sure it would be in the news headlines.
I recently finished three rounds of treatment on Nivolumab, one per month, and last week had another PET scan. This will be, going forward, how my life is defined, in three month chunks, followed by a scan and the results.
I got the scan results a couple of weeks back. I was hoping for a shred of hope after so much bad news. Not good though. The Nivolumab has had no apparent effect, and the cancer in my lungs has increased in size with some new spots visible. I’m almost getting numb to bad news now.
So, on to ‘plan b’, which is to employ another immunotherapy drug, Erbitux, in concert with a couple of different chemotherapy drug. Erbitux has a method of action where it bonds to the surface of the cancer cells, and then your body’s immune system knows to attack and remove those cells. A common side effect of Erbitux is acne. I’ll start that treatment next week. This is the last hope it would appear. While there are clinical trials for a lot of advanced cancer patients, the type of head and neck cancer I have is comparatively rare so there aren’t any clinical trials addressing my particular condition. Sometimes it’s not so nice to be special.
Time is growing short though. If this next immunotherapy/chemotherapy regime does nothing, then I will likely start noticing increasingly pronounced side effects from my lung cancer by the time of my next scan. I’m already experiencing a persistent dry cough and incredible fatigue which are symptomatic of my condition. Things go downhill fast once the more pronounced symptoms start. According to the doctor I could have as little as 4~6 months left if such is the case and maybe gone from this world before 2020 begins. Obviously, hoping for otherwise. You think you have time, and then you find you overestimated.
Through all this treatment I have endeavored to get in as much shop time as possible. The Colgate Project last year was sandwiched in between my neck surgery and the onset of the chemo/radiation nightmare. Coming out of that, Jeff Koons staff got impatient to receive the 4th Chinese wheelbarrow. I got that done but then had to chase them for payment, which was weird and unexpected but was sorted eventually.
And I have continued work on the current cabinet for my client, but there have been significant interruptions along the way of course, and my stamina to work of late is much diminished so a half day in the shop is often all I can manage. I work for half an hour and then have to rest for 5 minutes. I am sure I will complete the piece at this point though, despite the bleak health situation. I’m getting very close to finishing.
In writing on this, my hope is it will make clear why my rate of progress on the cabinet build has slowed greatly, and why blogging has become less frequent. Also, if you get a white patch on your tongue do not underestimate it or waste time with incompetent doctors. Realize that even health athletic people with no family history of cancer can get cancer. Life, and whether it is long or not, healthy or not, is just a matter of luck sometimes, bottom line.
I do not write the above in hope of attracting sympathetic comments. People die all the time, one every 8 seconds on this globe, and I’m no more special than any of the rest. While I’m open to what people might have to say, I’m also not looking to learn about anybody’s miracle cure suggestions with some special Peruvian tree bark extract, say, or stories about how someone they knew was at Stage 4 and had spontaneous remission and have been fine for 20 years since. That stuff is just not helpful, and believe me I’ve heard it all already. Just wanted to explain the situation with my life and how it affects this blog, that’s all. I wanted people to know what happened to me.
I’m trying to cope with this bizarre new reality as best I can, and priorities necessarily must be re-ordered in such situations. One of the outcomes is that I am closing my shop. I’ve sold three machines already, and have given notice to be out of my shop space by July 31st.
Amazingly, I have had a piece of luck in that the person who bought my Martin shaper has said he will buy all the rest of my machines and shop equipment. That saves me a lot of hassle, though of course we will need to work out a package price which makes sense for both parties.
The writing was already on the wall for the move due to the fact that the shop space can’t really be used for three months out of the year due to the lack of a heating system that makes any economic sense, the injuries I have sustained in the cold shop, and my landlord was looking to raise the rent. In fact, he sent me the rent increase notice – a more than 40% increase, just a couple of days ago. Time to go, regardless of the cancer situation. I would have moved out from the space in response to the rent increase even if my heath situation was not a factor.
I had been planning to move some portion my shop, in some configuration, down into my home basement. I started out this blog working off of a sawhorse in a kitchen, so I figured I could make do with a space only about half the size of my current shop space. But, with the recent turn of events and prognosis, I can no longer have even small dreams like this and will be looking to simply sell everything. It’s depressing, no other way to describe it. My tools are something I cherish, and dreaming up, designing and executing projects the core of my identity as a woodworker, so to lose all that now, so suddenly, is hard to take. It’s like trying to maintain a grip on fistfuls of sand.
I may or may not do any more entries in the current build thread, though I do advance the project every time I am in the shop, which is most days of the week of late. I hope to at least put together an assembly video at the end. That could happen in the next 4~5 weeks, and of course I’ll let readers know about that when/if it happens. I’ll endeavor to not let this blog end on such a downbeat note as this post.
My apologies for the long post. All for now.