This morning I had an appointment with the oncological nurse practitioner who specializes in Interferon immunotherapy treatment for melanoma.

After she looked at my blood work, I was told my liver function was spot on, but that my white blood cell and platelet counts were extremely low, at 1,900 cells per cubic milliliter (cmm) of blood.

For reference, two weeks ago I was at 2,600 cells per cmm, while the normal healthy range is between 4,500-11,000. Likewise, my platelet count was down to 72,000 per cubic milliliter, down from 117,000 two weeks ago, with a healthy range being 150,000-400,000.

The nurse indicated my white blood cell counts were in fact now so low that I needed to be very careful about exposure to any infectious agents in the next few days, because it would be difficult for me to fight off infection in my weakened state. Also, to allow my body to stabilize, I also needed to suspend use of the Sylatron for a week or so to see if my counts recovered, and if they did (and she had all expectations that they would), shifting me to the lower maintenance dose of Sylatron of 3 μg/kg at that time to avoid a repeat of this situation. There is no indication that the reduction of the dosage earlier than anticipated will negatively impact the effect of the treatment, which is a relief.

So, no Sylatron for me tomorrow.

I will have new blood tests in just over a week when I return from New York City, where we will be dropping Krystyana off at the JFK airport for a trip she’s taking with National Geographic Student Expeditions to Italy and Greece for a couple of weeks.

You may be like I was, wondering how immunotherapy treatment would result in a more vulnerable immune system. Apparently the immunotherapy drug acts as a kick-start for the body to fight against the melanoma cancer cells, but also strikes a balance in the system, reducing white blood cell counts, among other things. The remaining white bloods cells should still sufficient to tackle the cancer cells (or so it appears to be), as long as there aren’t other problems, and suspending treatment for a week is generally sufficient for the body to get counts back closer to normal.

I was told that suspending use of the immunotherapy drug with a later downward adjustment in dosage was at not unusual, and that this is typical in a majority of patients during the interferon induction phase. Nor are my symptoms in any way unusual. Learning this was comforting. I also took additional comfort that with postponing my next dose I might actually have a bit more of my appetite come back, just in time for our jaunt to New York City and some of the fine dining we are planning on doing there.

More on Mutations

The meeting this morning was also educational in that I learned that while the genetic analysis of my melanoma indicated I had an NRAS gene mutation (see my prior blog post), that was not necessarily a negative thing. As I had written, the more common BRAF mutation is what is being targeted by some of the new melanoma drugs, but I was told that BRAF mutations actually carry a much higher risk of both relapse and aggressive spread of melanoma, relative to NRAS mutations. So while BRAF mutations have the targeted drugs and NRAS don’t, it’s probably because the BRAF mutations need it more. Further, these genetically-oriented treatments are more palliative (treating the symptoms and side effects) in nature than they are curative. So, I guess, a bit of a silver lining in my genetic mutation leading to my melanoma cancer.

Scans Coming Up, Radiation Too

The other result of the morning meeting was that I am now scheduled for full scans in about two weeks. These scans will be merely a snapshot and benchmark, and are expected to be clean, as all such scans could show are sizable tumors, and not any microscopic “seeds” of melanoma that might still be in me. I will also be starting my radiation consultations at the same time, which will ultimately lead to a simulation-generation scan, and then radiation treatment. I may also end up staying on the Sylatron during radiation now, but that is only a thought, not definite.

A Bit More On Talking About Cancer

Some discussion ensued about my “Cancer Sucks” t-shirts after my last post, leading to the idea that I and my fellow melanoma patients are really “Melanoma Warriors”. So, my next quest is to get some t-shirts made up with “Melanoma Warrior” on them. If any of you has a good source for low-volume, high quality t-shirts printed with block letters, let me know.

More from me later as my situation evolves.


(I apologize in advance if some of this information seems repetitive to some of you, but I’ve been finding that people are finding my blog via search engines when searching for information about their own melanoma treatment options, and may not have the benefit of having read my previous posts.)

It has taken thirteen weeks and two days since I learned I had melanoma, but yesterday I finally started the systemic treatment which will hopefully prevent, or at least substantially delay, the further onset and spread of the nodular melanoma I have been afflicted with.

Close-up of Sylatron box front view

Close-up of Sylatron box front view

As I have previously chronicled, the systemic treatment designated for Stage III melanoma cancer – cancer which has not yet spread beyond the lymphatic system to various organs in the body – is typically the use of Interferon-alpha-2b. Other types of Interferon are used to help treat multiple sclerosis, hepatitis C, among other illnesses and diseases.

In contrast to systemic treatment for many other types of cancer, which involves cytotoxins (cellular poisons), and goes by the more innocuous yet ominous name of “chemotherapy”, Interferon is actually a biological substance that our bodies produce as part of our immune system response. Thus, treatment with Interferon is in fact “immunotherapy” – a way to attempt to help boost the body’s immune system to fight off things that should not be present, such as melanoma cancer cells.

I count myself as fortunate, at least as fortunate as I can be given my condition, because my onset of melanoma took place at a time when two new drugs to fight melanoma were being approved for use by the U.S. Food and Drug Administration (FDA). One of those drugs, Yervoy, applies only to the even more deadly Stage IV melanoma, while the other, Sylatron, is ideal for people with Stage III cancer, like my Stage IIIC. Both were released the same week that I was diagnosed with melanoma.

Sylatron is also Interferon-alpha-2b, but in pegylated form. Traditional Interferon treatment for melanoma – which has been in use for well over a decade – is a long, drawn out affair involving daily, 90 minute treatments via intravenous infusion for the first month, and then self-administered thrice-weekly injections for another eleven months. It has to be administered in this fashion because the human body rapidly absorbs Interferon as a natural process, so when introduced into the body from an external source, it only has a short lifespan to try and boost the immune system.

This spike in Interferon in the body after an infusion or injection also potentially ends up generating more severe side effects, which include flu-like symptoms, fatigue, and even itchy skin, among others. I was told by the nurse I saw yesterday morning that it was not uncommon for these side-effects to appear in a matter of hours after one of the regular thrice-weekly injections. For those that suffer the side effects there’s a constant rise and fall of intensity as well, based on my research.

Enter pegylated Interferon-alpha-2b – or Sylatron as it’s being marketed. The pegylation effectively encapsulates the Interferon and allows it to be released in a steady fashion into the body – much like a time release form of an over the counter pain medication. The benefit of this is three-fold.

First, it means a melanoma cancer patient like myself only has to get one injection (a self-injection as well) a week, of only a fraction of a milliliter of the drug. No need for daily 90-minute IV sessions during the induction phase – just a higher dose.

Second, because the body doesn’t go through the extremes of Interferon over-abundance and absence, the side effects may be greatly diminished in intensity (although all the same types of side effects are still possible), and at the same time it can make prolonged treatment beyond a year more bearable.

Third, a five year clinical trial in Europe of pegylated Interferon (the same trial which led to approval by the FDA less than three months ago) suggests that it may produce better long term results than the traditional non-pegylated version. In fact, as it was explained to me by my oncologist, one of the benefits cited by the study was that it provided a decent quality of life during the treatment period, with the intention being that someone being treated with Sylatron could live a reasonably normal life during treatment, including being able to work (and continue to earn a living).

More details from the box of Sylatron

More details from the box of Sylatron

The only real downside to Sylatron is its price. Four weeks (four doses) of the 888 microgram dose I currently need costs $12,576.99. That works out to about $3,144.25 per dose. And I have to be using an elevated induction dosage of Sylatron for eight weeks. After that my dosage will drop by about half for each weekly injection, although I doubt the price drops by half as well. As I pointed out in my previous article, this is an excellent reason to have insurance with prescription coverage.

And here’s a crazy thing: the actual dose I am supposed to inject myself with each of the first eight weeks is actually 648 microgram (give or take a microgram or two). That number is based on multiplying my weight by about 6 micrograms per kilogram of weight (and please, no comments about my weight – it’s a sensitive issue right now). The remaining 240 micrograms of Sylatron in the glass vial each week goes to waste as the drug only has a 24 hour shelf life once prepared for injection, meaning it can’t be save for the following week. That’s roughly 25% of the expensive drug wasted. Madness! However, the next smaller dosage for sale is 444 micrograms (of which I will be using about 320 micrograms), which will be enough once I go into the maintenance phase after my radiation treatment in August and September, but isn’t enough now.

However, I am extremely grateful, and yes, fortunate, that my melanoma surfaced when it did instead of even a month or two earlier because I have access to the Sylatron.

In fact, I am the first melanoma patient at Massachusetts General Hospital to be put on Sylatron – that’s how new this drug is in terms of systemic Stage III melanoma treatment. And while some might call me a guinea pig, I prefer to think of myself as a pioneer, and perhaps even a role model.

Obtaining Sylatron

So, I have now spent many hundreds of words on what Sylatron is about (which, as I pointed out, would be repetitive for some of you). Let me proceed with the reality of getting and using Sylatron.

After resolving many communications issues between the hospital and our particular insurance carrier (which specializes in coverage for U.S. citizens who are not U.S. residents and generally does that very well), word came in early this week that my use of Sylatron was pre-certified. We’ll see how that translates to the turn-around time on reimbursements for the monthly dose.

There are apparently specialized pharmacies around the country which deal with rare and expensive drugs like Sylatron. As one might imagine, one cannot just walk into any pharmacy and submit a prescription for a rare and expense drug like Sylatron. Here in Boston where I am getting my treatment, one of those special pharmacies is CVS CarePlus on Kneeland Street. My oncologist had made arrangements with them a couple of weeks ago for my Sylatron supply, and I then had to coordinate with them on a plan to provide and deliver the drug to me. Originally they had planned to FedEx the Sylatron to me, but without any insurance – that also seemed crazy. Once they realized that I was only about two miles away, they opted for a courier instead.

This past Monday, the courier arrived at our apartment, asked me to confirm verbally who I was, and handed me a brown paper bag and then left. I was never asked for ID or to sign anything. That lackadaisical delivery had me a bit freaked out, but I was also happy to finally have my treatment drug in hand.

My four pack of Sylatron for the next four weeks

My four pack of Sylatron for the next four weeks

The First Injection

The reason the drug came to me instead of the hospital goes back to the aforementioned self-injection. Sylatron is meant to be injected by the patient (or a not-too-squeamish loved one), so it makes sense for the patient to have the supply of the drug on hand in the home.

My mission yesterday morning (Wednesday) was to bring one of the four boxes of Sylatron I had in my possession to one of the oncology nurses at Mass General so she could show me how to prepare the drug for injection, and also how to inject myself.

Unboxing a box of Sylatron

Unboxing a box of Sylatron

Ellen, my oncological treatment nurse, spent a bit of time explaining how dosages worked for Sylatron, and also confirmed that I was the first cancer patient to be put on the drug as a course of treatment at Mass General. The local sales representative from Schering, the makers of Sylatron, had visited Ellen the day before and given her more background and general information about the drug as well.

As I was the first Sylatron patient ever, I was also asked to keep notes on my reaction to the drug, as there were two or three other patients coming up that would also soon be starting their Sylatron-based treatments, and the more practical information Ellen had about the Sylatron treatment, the better.

The box contains alcohol swabs, syringes, documentation, a vial of Sylatron in dry form, and a vial of sterile water

The box contains alcohol swabs, syringes, documentation, a vial of Sylatron in dry form, and a vial of sterile water

After reminding me to wash my hands, Ellen had me unpack the box, which consisted of two vials – one of powdered Sylatron and the other of sterile water, two alcohol pads, two 1 milliliter syringes, and some documentation with drug information and details on all the sordid possible side effects.

Nurse Ellen explains how to use the syringe to mix the water with the powdered Sylatron

Nurse Ellen explains how to use the syringe to mix the water with the powdered Sylatron

To prepare the drug, I needed to extract .7 milliliters of sterile water from the water vial, and then inject it into the Sylatron vial. The Sylatron itself, which was in the form of a large aspirin tablet (as best as I can visually equate it) dissolved almost immediately upon contact with the water, getting a bit frothy in the process.

I then needed to extract .6 milliliters of the Sylatron in liquid form, and then inject it into myself.

Preparing for the mixing of the water and Sylatron

Preparing for the mixing of the water and Sylatron

The injection needed to be subcutaneous (below the skin), and the needles on the syringes were about half an inch long and very skinny. Ellen said that the injection could go anywhere that I could “pinch an inch” other than in my afflicted right thigh, and that it was best to simple jab the needle in quickly.

As I was wearing shorts, I opted for my left thigh as the target site. I swabbed down with the sterilizing alcohol pad, pinched my skin, and then slowly inserted the needle into the lump of skin. I opted against the quick jab because I was afraid I would miss, and I could not bear to see any of the precious .6 milliliters of Sylatron go to waste (after all, it costs over $500 per tenth of a milliliter!). It was a bit difficult to force the needle in (from a mental perspective) but once I penetrated the skin with the tip of the needle it ended up being no problem at all.

My first ever self-injection, holding the base while I depress the plunger, to make sure nothing escapes

My first ever self-injection, holding the base while I depress the plunger, to make sure nothing escapes

I held the base of the syringe against my skin as I left the skin go flat again and slowly depressed the plunger. That was it – surprisingly painless and simple. Next Wednesday, I do it all over again.

The aftermath of the injection - syringes have been disposed of and the vials are mostly empty

The aftermath of the injection - syringes have been disposed of and the vials are mostly empty

Side Effects

It’s now been about 32 hours since that injection, and on the whole I’m feeling reasonably well. I have a bit of fuzziness, fatigue, and achiness that I might associate with a flu or cold, but cannot say with certainty that it is entirely due to the Sylatron.

We happen to live near the Boston TD Garden, and there was a lot of loud excitement down below us on the streets as a result of the long overdue Bruins Stanley Cup win. We even had helicopters buzzing our apartment building. The celebratory cheering lasted most of the night and erupted again this morning when the Bruins returned to the Garden to get their cars after a red eye flight back from Vancouver.

So, I am thinking that the lack of sound sleep as a result of the celebrations may be the cause for some of my current aches and tiredness.

I am guessing I will get a better handle on the side effects over the coming few days, just in time for a several day business trip I need to take next week.

Next Up

This article has gotten too long for me to be able add information about lymphedema in my afflicted leg, so I will leave that until next week’s contribution as it is pretty interesting (at least from my perspective).

In any event I am thrilled to have finally started my systemic treatment, and hope that it achieves the desired result of helping my body attack and destroy all the melanoma cancer cells that might still be in my body. It’s a good feeling to be doing something towards that end.


As I continue to mend from the two surgeries I have had in the last two months (April 1st and May 9th), and plan for my indeterminate future, I find myself contemplating the cost of having cancer.

We typically think of “cost” as a financial issue – and certainly finances are no small matter in dealing with cancer, as I will describe below. But the cost of cancer takes its toll in a number of ways.

Among the more obvious costs are stress, depression, and confusion – and not just for the person who has been diagnosed with cancer, but also his or her family and friends. As I’ve discussed in prior posts, cancer has a very negative societal stigma – for good reason in some cases. But not all cancers are the same (in fact, few are the same) – some are deadlier than others, though if popular media were to be believed, all people with cancer must necessarily be miserable, desperate, resigned, physically weak people on the verge of expiration. That perception only adds to the actual cost of cancer, as it increases the stress, depression, and confusion.

That’s not to say that cancer should be portrayed as ordinary and innocuous, but there needs to be a more balanced approach to both educating the world about cancer in general and particular cancers in detail. My own research into melanoma as a layman has both been enlightening and terrifying. Enlightening because it is not nearly as glum a diagnosis as it’s made out to be, and terrifying because of how rapidly it can spread and how far behind other cancers, such as breast cancer, it is in terms of viable treatment options that can eradicate the melanoma cells.

The stress of simply “not knowing” is enormous, and is only compounded by the stress of how life altering the diagnosis is and how rapidly things happen after the diagnosis. Here I am, just over 10 weeks after diagnosis, with two surgeries under my belt, and a treatment plan that, assuming nothing else bad is found, will have me injecting myself and getting irradiated quite soon (more on that below as well), with my treatment lasting as long as I can handle it. On top of that, I will need to be back here in Boston for quarterly scans to detect a potential relapse (or, more optimistically, to confirm I am clear of new cancer) for years to come. Talk about a major life upheaval both for myself and my family.

Speaking of “under my belt”, one of the other costs of my cancer became evident yesterday as I realized just about none of my pants fit me anymore. Being laid up for two months with limited mobility has taken a major toll on my waistline, and the swelling in my right thigh added to that body change means I’ve gone from a 34-35” waist up to a 38-40” waist. It was distressing to have to try on a pair of cargo shorts with a 40” waist yesterday because I couldn’t get the 38” ones over my hips due to the swelling and weight gain. I have gained about 15 pounds in the last couple of months. I can only hope that as I become more mobile I can work myself back down so I can fit into my pre-cancer diagnosis clothes.

Mobility is definitely in sight, though.

I had a brilliant day yesterday as my surgeon removed the metal staples from the lymphadenectomy surgery that took place three weeks ago. He also informed me that the drain that has been the bane of my existence (and the sole source of pain when moving now) will be removed early next week. Another week with the drain will be tough, but knowing the end of the drain is coming is very encouraging and uplifting.

As a result of the date being set for the drain removal, I was then informed that my immunotherapy treatment with Sylatron (see my previous post) can start on June 15th. Simply knowing I actually have a start date for my treatment is a huge relief as well, and helps dissipate some of the stress associated with “not knowing”. I will be on a higher initial dosage of Sylatron for 8 weeks, then weaned off for a week or two before starting four to six weeks of radiation therapy, after which I will resume my Sylatron injections.

In light of all this news, I felt so good yesterday that I went on a bit of a walkabout with Linda and the kids. First to wander around nearby Charles Street, and then to go shopping for whole leaf tea and supplies to make fresh brewed ice tea, since warm weather is perfect for consuming ice tea.

I had held off on the tea buying field trip because I had heard stories about anti-oxidants potentially causing problems with cancer treatments, but my oncologist confirmed that I had no dietary restrictions (including tea and wine) during my immunotherapy – the issue with anti-oxidants applies more to particular chemotherapies (when one is being treated using toxins to kill cancer cells – not the case in immunotherapy, which is boosting of the immune system).

And while out for tea, I also tried on shorts, which lead to my weight gain revelation.

But as some stress gets alleviated, new stress crops up too. Right now that new stress is dealing with health insurance.

While we have a very good medical insurance program, it is a bit atypical with respect to prescription medicines. Most American health plans offer a prescription card, maybe with a co-pay, which can be used to cover most of the cost of prescriptions at a pharmacy. However, our plan is designed for American citizens who live outside the U.S., so instead we have to pay for our prescriptions out of pocket and then submit a claim to be reimbursed. Normally that’s not a big deal.

However Sylatron costs about – sit down for this – $13,000 a month (not a typo). And I could be on Sylatron for years. So, the last week has been spent trying to confirm that the insurance company will in fact pay for the Sylatron prescription, and to see if there would be some way to bypass the issue of having to pay for it first and then get reimbursed.

Adding to the stress is the insurance company won’t confirm it will pay for anything until it actually processes a claim, and there’s apparently no alternative to the pay-then-claim approach, so right now the hope is that they will quickly approve and pay the claims we submit for Sylatron each month without setting up any roadblocks or delays, so that we can limit ourselves to only being out of pocket for one or two months of drug costs at any one time (which we can manage fine, fortunately – it might get sticky if it stretches out to many months though). I should add that under our current policy there should be no reason they could deny coverage, but they could certainly drag their heels. Let’s hope they don’t.

On the bright side, the specialty pharmacy which stocks and sells the Sylatron takes credit cards, so we’ll be racking up lots and lots of American Express Membership Reward points for travel.

I had never quite imagined that a legal drug treatment, especially one you inject yourself, could be so expensive. Although, that said, Yervoy – the late stage melanoma drug – runs about $130,000 for four injections over a three month period. Ouch. Hopefully I will never have cause to experience that!

It is also interesting to note is that the medical bills thus far submitted by doctors and Concord Hospital on my behalf through just my first surgery in April and related follow ups is now over $45,000. I would guess that the cost of my second surgery, plus the overnight stay at the hospital and the visiting nurses visits will be at least twice that.

The lesson to be learned here is to make sure you have decent health insurance with prescription drug coverage, since cancer can happen at any time, to anyone, as I have learned. Age is not a factor for certain cancers, and if you look at melanoma in particular, many 20 and 30-somethings are being diagnosed nowadays, and without insurance, if the cancer doesn’t ruin their life, the medical bills will.

Cancer takes a toll, and the only option for real survival is to forge forth and face each new challenge as best you can, and rely on the spiritual, emotional, and physical support of your loved ones as you do battle. And make sure you’re insured too. A few thousand dollars a year for medical insurance can save you hundreds of thousands of dollars later on. This is one time I’m glad I am anal retentive about insurance in general.

For now, I expect to be making more forays on foot around Boston in the coming days and weeks, and trying to regain my former weight and physique (which wasn’t anything great to start with but definitely better than what I have now), interleaving it with various client projects. And I plan on celebrating next week when the darned drain finally comes out of my body and I will be physically whole again (disregarding the missing 21 lymph nodes and slab of skin on my thigh for the moment). And in case you’re wondering about my wide excision skin graft site, that is healing nicely too. It should be sealed up completely in a week or two.


While I wasn’t particularly concerned about the earth being ravaged by earthquakes yesterday as part of the widely publicized rapture, I did find myself relieved that nothing of earth shaking significance happened anywhere. I also find myself pitying the thousands of Rapture believers for whom reality contrasted sharply with their fervent beliefs and expectations in what was going to happen to them. It’s a lesson that those of us who have been diagnosed with cancer can learn from as well. And before you suggest I’m being negative, let me point out there’s a difference between hope and expectation. I hope and wish that I will live a long time. However I limit my expectations to the near-term, as that is all I can judge and evaluate.

Part of the reason for limiting expectations is that cancer in general is the result of a mutation, and this cellular mutation exists and adapts in a very Darwinian fashion. Much as we try to kill the cancer cells, the cancer cells are trying to survive. So, while surgery and treatments may eliminate virtually all of the cancer cells in a body, there’s no proven, consistent way across all patients, to completely eradicate all residual cancer cells in a patient. In some cases, it works out, but the statistics and probability of complete “cure” vs. almost guaranteed relapse vary based on the type of cancer involved. According to “The Biology and Treatment of Cancer”, there are around 200 different kinds of cancer cells identified so far, with most unique enough to require targeted treatment. And it’s not uncommon for cancer cells to mutate further during some chemotherapy treatments and become resistant or immune to those treatments, requiring a new one to be applied or even developed (from “The Emperor of All Maladies”).

I understand from friends who have and have had cancer, as well as from my readings, that the stress and anxiety that surrounds the regular scans they have to see if their cancer has returned is high, because, of course, it could signal having to go through a whole new round of procedures with an uncertain outcome. And for better or worse, after my upcoming treatments are complete, I too will be victim to a (hopefully long) life of uncertainty, especially as my form of melanoma, which I’ve been told is “nodular melanoma” – a very aggressive form, evidenced by the progression from nothing to multiple tumors as large as 2.2cm in my lymph nodes in just four months, is known for a not-insignificant rate of recurrence. Statistically, because I also had cancer cells appear outside the capsule of a lymph node (i.e. extracapsular extension), that also increases the likelihood that I will be revisited by melanoma at some point in the future.

A new friend, who was diagnosed with melanoma about five years ago, but has recently had a relapse with complications, explained to me that he and his wife found that the best way to cope with the impact of the disease on the mind, soul, and body was to live in the moment, and live one’s life – something which he says is not always easy when you are dealing with your own mortality. My piece on priorities a week ago kind of brushed on this idea, but I’m still coming to grips with the idea that I perhaps should not be making substantial long term (multi-year) commitments, which is causing me to reevaluate whether or not I want to continue pursuing my Master of Fine Arts in Photography degree (which will take another 3-4 years of time, nearly full time), or simply charge forth and spend that time in a more intensely productively fashion.

So, my future is a perpetual work in progress, taken a day or a week at a time.

The Fog of Cancer Therapy

In order to be true to the title of this post, namely the various “Fogs” I am experiencing, I would like to share both updates and current perspectives.

Last week I had my first meeting with the clinical oncologist under whose guidance I will be receiving my post-surgical cancer therapy. As I discussed previously, the purpose of the surgical lymphadenectomy (also referred to as a “complete lymph node dissection”) I had two weeks ago was to try and surgically remove the cancer from my lymphatic system before it could spread further, or more realistically, as much of it as possible. Cancer is insidious because it is a cellular mutation, meaning that if even one cancer cell (which is a very tiny, microscopic entity indeed) is left behind, over time it can multiply and spread. Using a macro-level procedure like surgery, while potentially good at removing larger aggregations of cancer cells (usually in the form of tumors), is not great at the cellular level for the simple reason that a surgeon can’t see and distinguish such cells.

That’s where adjuvant therapy comes into play. After surgery is over, additional steps are taking to try and destroy any vestiges of cancer that may still be present. There are two type of post-surgical treatment to be considered – localized and systemic.

In the case of my melanoma, the clinical oncologist suggested that both localized and systemic treatment be applied. The localized treatment would be via radiation, specifically in the area where my lymphadenectomy took place, namely my right groin region. The systemic treatment involves drugs which would be applied regularly to fight any cancer cells that might be left anywhere in my body – in the whole system (hence “systemic”).

The clinical oncologist discussed a number of options with me, including the stock treatment for stage III melanoma patients, namely Interferon-α, a new form of Interferon-α recently approved by the FDA called Sylatron, a late stage drug also recently FDA approved called Yervoy (ipilimumab), and some other experimental options via clinical trials.

Yervoy has the issue that it has not had any studies done yet for Stage III melanoma patients – only late state, Stage IV (for which it was successful as these things go). That meant that, considering the roughly $130,000 price tag for a four-course treatment of Yervoy, insurance would not cover the cost, nor was there necessarily any reason to believe it would even have any effect on Stage III melanoma – it might, but it also might not. The doctor mentioned that there was a clinical trial under way now for Yervoy in Stage III melanoma patients, but that it was a placebo-based trial (meaning that some participants would receive Yervoy, and the others placebos), and the results wouldn’t be known for years (since in Stage III there are no tumors to measure to determine effectiveness – it would be solely based on relapse timelines). Furthermore, Yervoy has potentially serious side effects, including liver disease and even (in very rare cases), death.

My wife Linda and I had discussed the possibility of clinical trials previously – which are basically where someone volunteers to be a subject in an experiment in the hopes the experiment is successful in producing a positive result, as compared to some sort of baseline. That baseline can either be a group of patients in the trial using an established treatment, or alternately, being given a placebo but being told it is the experimental drug. I have a tough enough time leaving things to chance, so the idea of being part of a clinical trial where there was a chance I would get a placebo and no treatment just was not for me (never mind that Linda would have vetoed any such participation as well because of the uncertainty).

Seeing as the Yervoy and other clinical trials currently available were placebo referenced, that ruled those out as options.

I had already known from my research that Interferon, which has been a standard Stage III melanoma treatment for over a decade, would be the most likely option for me, even though its side effects, while not generally harmful, are pretty miserable. Interferon works by boosting the immune system, with the hopes the immune system will then be better able to eradicate melanoma cancer cells on its own.

For many Interferon patients, the primary side effects are fatigue and flu-like symptoms – worse during the initial month of daily 90 minute long IV infusions of the drug, and a bit better during the subsequent 11 months of thrice-weekly self-injections. I’ve learned that it’s not uncommon, due to the impact of these symptoms for people to end their treatment early because they just cannot stand the physical burden any longer. Regular Interferon, because it is in effect a naturally produced protein, is rapidly absorbed in the body, with all traces gone shortly after infusion. So the body has this big spike of Interferon at the time of injection or infusion, and then spends time trying to get back into equilibrium until the next application – so large peaks and troughs.

The recent approval and release of Sylatron appears to provide a more manageable solution to Interferon side effects. Sylatron is still the same type of Interferon as the traditional treatment, but encapsulated in such a way that it hangs out in the body for a much longer time. In very simple terms, you could look at it as similar to getting your aspirin or acetaminophen in a time-release form. This means that the extreme peaks and troughs are no longer present, and the body can better adjust to the sustained use of the Interferon. The flu-like symptoms and fatigue are still there, but not as intense in most people.

Also, because of the persistence of the pegylated Interferon, the dosage and application is less intense as well. Sylatron is applied weekly, and during the first two months, a higher dose is used, after which a lower stable dose is switched to. All of these can also be self administered. The trial in Europe in which Sylatron was used was intended to be a five year treatment, but the average time patients continued with the Sylatron injections was around 14-16 months apparently, but with long term relapse rates which appear to be better (lower) that traditional Interferon, with the added benefit that people were not as sick and, in fact, were able to live mostly normal lives during treatment.

The end result of the first consultation with the doctor was to confirm (as I had previously hoped) that my best course of treatment would be to go with Sylatron as my systemic treatment.

Assuming my insurance company doesn’t set up any roadblocks, I should be able to start my adjuvant therapy in early June after my (damn) drain has been removed, and all my healing from surgery looks good. My next appointment is at the end of the month to try and narrow things down further.

The Fog of Radiation

So, with Sylatron as my systemic treatment determined, the next thing to deal with was my radiation therapy. There has been some literature which has suggested that radiation therapy is not particularly effective for melanoma, but on the flip side, it has also not been shown to be ineffective. What I was advised was that in situations where there was a fair chance of residual cancer cells, such as my extracapsular extension and activity, radiation therapy’s benefits outweighed the risks.

When you’re faced with the potential of relapse at some point down the road, you definitely find yourself more inclined to do anything you can which has a decent chance of postponing when that point will be, and thus I found myself quite willing to go ahead with the treatment.

After a consultation on Friday with the radiologist (who specializes in oncological treatment via radiation), I feel pretty good about the process.

First, let me detail the side effects of localized radiation in my right groin region:

  • It will likely cause sterility, preventing me from fathering any more children. Not a worry – I’m quite happy with the two I have fathered naturally (Krystyana and Sebastian), and my two “adopted” children, Aisha and Chip.
  • During treatment it will cause a light burn and sensitivity on the skin’s surface in the irradiated region. This can be treated with creams.
  • I may permanently lose some pubic hair. May look strange, but other than nurses, doctors, and my wife, and myself, no one is likely to see that, and if they do, it would create an interesting point of discussion.
  • I may end up with darker skin in the same area as treatment. Hmm. Let me think – skin discoloration or leaving cancer cells behind in my body to grow and wreak more havoc? Yeah. I’ll go with skin discoloration.
  • May increase incidence of lymphedema – swelling in my leg due to excess accrual of lymphatic liquids. This can be a real hassle, but the doctor pointed out that there are trained massage therapists who specialized in lymphedema therapy, and the use of compression stockings (I’m wearing one now) can mitigate the problem somewhat. I can certainly work with regular massages (although Linda had to ruin the warm and fuzziness of massages by pointing out that they could be painful, like a deep tissue massage can be).
  • Could undue any healing that is still going on. This is a real potential problem, but with a practical solution, namely not starting my radiation therapy until later in the summer.

Ultimately, the decision that both doctors seemed to agree on (with my concurrence) was to have me start on the Sylatron treatment for the initial two months of high dose injections, then get baseline and diagnostic scans performed, dry out from Sylatron for a couple of weeks, and then start my radiation therapy. The therapy will involve 4-6 weeks of daily (weekday) 20 minute radiation treatments at Mass General Hospital, meaning I would be tied to being in Boston during that time – no travel possible so that I wouldn’t miss any treatments.

During the initial set up in preparation for my treatments, the radiology department would create a special mold for me to lie on for best exposure to the radiation source and then create a 3-D mapping of the region to be irradiated. And I get some tattoos on my body as an added bonus. The tattoos will be used as orientation and reference points for the radiation treatment to ensure that radiation positioning is exact.

The radiation treatment would be performed via Intensity-Modulated Radiation Therapy (IMRT), which is a very modern computer-controlled radiation delivery system which can control the intensity and angle of the radiation in a way to ensure the target area is getting all that it is supposed to while minimizing the amount of radiation in surrounding tissues and organs. I was also amazed to learn that the IMRT mapping involves Voxels – volumetric pixels (something some of my fellow graphics geeks may be familiar with), as a way to represent the radiation values and accumulation in a three dimensional space (a little more on this can be found here). Very cool technology.

The Fog of Frustration and Pain Medication

So now, here I sit, under a fog of frustration and pain medicine as I wait for my body to heal. I’ve figured out that I’ve been something of an invalid in terms of mobility for most of the last seven weeks, and I am sick and tired of it.

I’m used to doing things for myself, and it’s difficult for me to ask others to do otherwise simple things for me because I can’t without hurting myself in the process. Stupid things, like putting on socks, for example.

I also hate not being able to go out without causing myself grief. I had to miss a recently departed friend’s Celebration of Life yesterday, and would have loved to have gone out for dim sum in Boston’s Chinatown this morning. But no go with my current infirmity. I had hopes to get to New York City next weekend to see a friend perform at Carnegie Hall, but I’m guessing that’s not going to happen for me either. Very frustrating! It’s like being in a virtual jail – no tangible bars, but restrictive nonetheless.

The healing of my surgical area and graft site are progressing well enough, but I have a lot of pain and discomfort from swelling and from the area where the drain tube exits my body, and as a result have been on doctor-prescribed rest and pain medication. Add to that that I have to sleep on my back (because of the drain) on a bed that feels too soft, and the result is back pain (goes away when I get up) and not more than about six hours of fitful sleep during the night. I may well start having to nap during the day to catch up, a practice I never really adopted. Now may be the time.

The other frustration is that until my drain is removed, I cannot start my Sylatron treatment, and my drain won’t get removed until the amount coming out is less than 30cc per day (I’m at around 200cc right now, down from close to 500cc a week ago, so some progress is being made). And until I start my Sylatron treatment, I won’t have a clear idea of when my radiation treatments might start (although the best guess is mid-August or so).

Fortunately, while not being mobile, I am able to sit in my comfy office chair for decent periods of time, and work on my computer and some consulting client commitments as well.

And I can slowly shuffle around my kitchen for short periods of time, which resulted in a suitable substitute for my dim sum cravings this morning, crispy pork belly with compote of cranberries and cherries, depicted below:

Crispy pork belly with a cherry and cranberry compote

Crispy pork belly with a cherry and cranberry compote

The one thing, however, above all others that helps me overcome my frustration with being infirm is the support of my family, especially Linda, without whom I would not be able to manage at all, and without whom I would be an absolutely nut job now (or, as my kids might suggest, more of a nut job).

The Fog of Future Treatments

Okay, so may this isn’t a fog, really, but one of the things that has become known about cancers is that they occur because of gene mutations in the chromosomes of damaged cells. The most successful cancer treatments so far, across all cancers, have been ones that target specific mutations that exist in the cancer cells but no other normal cells in the body.

In melanoma treatment, there’s been a pretty amazing amount of work in such mutation specific research in just the least half-decade or so, the result being that there are a number of new treatments under development to address the various mutations (a great, but highly technical paper on this subject by several authors, including my own oncologist, can be found here).

What this means is that if the genetic mutation of the cancer is known, and that mutation is one for which a treatment is being developed (and tested), the greater the likelihood of effective treatment. And such targeted treatments are also potentially likely to have fewer side effects because they don’t have a systemic impact on anything other than affected cells.

In my case, just over a week ago, I had requested that cancer cells from my recent lymphadenectomy be genetically typed by the hospital’s lab. That process will take up to a month. The results won’t make a difference in my current treatment plan as the only clinical trials being done on mutation-specific drugs are only for late stage melanoma patients.

However, the really good thing about getting my cancer classified now is that if I do have a relapse some years down the road, it will vastly speed the decision on how to treat the relapse. With the speed and breadth of melanoma research at present, the likelihood is very high that there will be a number of targeted treatments available – even three or four years from now – that would help me fight a relapse, should that occur (although the hope is that won’t be the case).

In Conclusion: The Fog of Boston

Keeping with my fog theme, I would like to close by saying that the fog we have witnessed from our 37th floor apartment (36th actually, as there is no numbered 13th floor in the building) here in Boston has been spectacular this last week, with visibility so low at times that we could not see the street below us or the lights of the nearby Zakim bridge outside our windows. Back on Bonaire, the weather is never really cool enough to create fog, so this has been a remarkable climate contrast for us.

Not sure when my next post will be, but I’m guessing it will be after my doctors appointments on May 31st with an update on what’s going on with healing, drains, and treatment. Until then, please hang in there – that’s what I’ll be doing too.


It is now the fifth day since my lymphadenectomy surgery this past Monday, and I am back, sitting at my desk, in front of my computer, spending time on my typical breadth of activities. However, the activities I am performing are not all the same that I would have been involved in prior to my malignant melanoma diagnosis nearly eight weeks ago.

I find that when faced with a situation like the one I am presently in – namely a serious threat to my mortality, certain things have become more important, and others have almost dropped off the radar entirely.

For example, I have developed a sophisticated server-based e-mail filtering system, which, based on a blend of destination e-mail address (I have a virtually unlimited number of e-mail addresses that route to me), subjects, and sender information, will sort incoming e-mail to one or more of several e-mail queues. One of those queues or mailboxes – the low-priority one consisting mainly of newsletters, corporate mail blasts, and e-mails from people who still use older degraded addresses to reach me – has over 100,000 e-mails waiting in it at present. And while I’ve been planning for weeks to try to plow through all that mail, I simply can’t get myself to spend the time to clear the several months’ worth of messages which have accumulated there, as if the messages were truly important, the senders would find other ways to contact me. It no longer seems important to spend my now much more precious time dealing with things like those low priority e-mail messages.

I am also a big fan of the comic strips in newspapers – something unavailable to me in the few newspapers we get on Bonaire. One of the hidden blessings of moving to an apartment in the U.S. for my treatments was the daily newspaper delivery I could arrange (with the Boston Globe), primarily for the comic strip (and for some local news and events information). But even so, I can no longer justify the time to read comic strips that I never quite enjoyed with in the hopes they get better or more intelligible (with apologies to the fans of the Zippy and Sylvia comic strips). The reality is they won’t get more interesting no matter how many of them I read, so I really don’t need to waste my time bothering with those particular strips.

I also no longer spend a lot of time on random web surfing. When I do track stories or topics they tend to be more focused (keywords like “melanoma”, “extracapsular activity”, “cloquet”, “metastasis”, “yervoy”, “ipilimumab”, and “interferon” have been recent top search terms for me).

On the flip side, writing has always been a passion of mine, as has photography, so I am devoting more time to writing (as evidenced in this blog at present) and the continued evolution of my daily photo blog at

While my home life has always been unusual in that both I and my wife work at home and our kids are home schooled, I am also trying to be more adaptable to the requests my children and wife have of me, as other than my health, they are my top priority. For example, yesterday Bas (my son) and I finished Portal II on the Xbox 360 in co-op mode, something he has wanted to do for a while. And we’ve also been playing a bit more World of Warcraft together (with my daughter Krystyana as well) in the last few weeks.


Among the shifting priorities I have been facing and have adjusted to is “modesty”. While I have never been a truly shy person, this past week has shown me that modesty is no longer important in the grand scheme of things. I’ve lost count of how many people I have stripped down to nothing for this week (or flipped up my gown for while at the hospital – including the young and serious female intern who inquired about testicular swelling and wanted to perform a visual inspection). In addition to “show”, there has also been “tell”, where I have discussed my most personal physical details and issues with whichever nurse, doctor, or doctor-in-training who asked.

In fact, with nurses from the Visiting Nurses Association now coming by the apartment to check on me and my post-operative recovery, I find myself “dropping trou” (which, according to the Urban Dictionary means “To lower one’s pants (trousers) down to one’s ankles, often in a sudden, impulsive manner, thus exposing one’s nether regions”) almost without being asked. I think this is a subconscious move on my part to seek vindication that my surgery was worth the effort and that I am recovering properly. And frankly, with mortality on the line, showing one’s dangly bits to a medical professional is hardly a matter of huge import anymore. From a sociological perspective, it is fascinating to see how quickly our attitudes change when our situations change. My wife Linda tells me that this is a point that women determine and arrive at a lot earlier than men, since things like childbirth result in broad exposure of one’s nether regions, never mind excruciating pain – pain which could expose one’s soul to the world.

That said, I would not be surprised if misplaced modesty among others might result in delayed diagnosis and treatment solely because the patient was too embarrassed to explain or show a personal problem to a medical professional. My advice for any of you in a potentially embarrassing situation is to bare all – literally and figuratively. When it’s your health (and future) on the line, embarrassment is inconsequential and unimportant. Survival is what counts.

A corollary to this is that it’s okay to be emotional and cry, even as a male in our society. And yes, it’s also okay to tell another male that you love him (or to tell another woman who is not your spouse or other relative that you love her too). And let’s not forget hugs – we all need to get hugs, and give hugs. Sharing our emotions is what binds us together as human beings. That’s something I am relearning right now, and it has been both a freeing and grounding experience at the same time.

Don’t Use Illness as an Excuse for Inaction

As human beings, we also procrastinate and try to avoid things which are unpleasant, and we may confuse such actions with the cognitive setting of priorities. I would suggest that just because one is dealing with heavy issues, it’s not a reason to just blow off everything you don’t want to do. Maintaining a decent level dedication to your commitments, and making your time count towards things that have meaning are both good priorities. It’s too easy to simply wave off everything and do nothing, and I would suspect that would only lead to a downward slide toward depression because in the process you lose things that give you self-worth as well.

Mind you, it may not be easy to stay focused on what needs to get done, but I believe it’s vital to have goals at all times, and to pursue them, because in turn that keeps one’s spirit strong.

In Other Words…

I realize in re-reading the above that I am probably not really doing as good a job explaining myself as I should, but let me try to summarize this way: When faced with dramatic challenges in life, focus on the things that are most important to your mental and physical well-being, and never forget your loved ones – family and friends (and pets). Make the time you spend on anything you do mean something, at least to yourself. And don’t dwell on only the negative – that can never end well.

And Now, For Something Completely Different – My Status

So, with my day’s ration of philosophy and observation out of the way, let me share some updates in my health situation.

As I wrote a couple of days ago, my surgery went well. Although the swelling in my right thigh is still sizable, my overall pain level is slowly decreasing. And it made my heart glad this morning when the nurse who came to visit expressed amazement that I was up and about. She couldn’t believe I had only had surgery on Monday.

More troubling, however, have been two other things. The first was on Wednesday when my drain (pictured in the previous blog entry) had stopped showing any new liquid. Wednesday night I ended up experiencing significant swelling (including the aforementioned testicular swelling the intern had asked me about) and got a bit panicked. I ended up calling the nursing association as well as my doctor, with the result being a request that I come into the doctor’s office the following morning to have the situation looked at. I neglected to ask how such a problem would be resolved and had visions that they would have to cut me back open to unclog the part of the drain (about 8 inches worth) left inside me – this resulted in a pretty terrible stressful night of fitful sleep.

On Thursday morning, the doctor’s P.A. (physician’s assistant) was able, via a process called “milking” (of the plastic tube of the drain, in case your mind was in the gutter), get the drain working again, and I’ve now been happily draining hundreds of centiliters of lymph fluid again, with swelling in other areas vastly reduced (much to my relief!). At the same time I was also informed that there were several other ways to try to unclog drains, none of which required a brand new surgery. If only I had thought to ask I could have saved myself a lot of worry. Note to self: Ask all the questions up front whenever possible.

The second troubling item was that I also learned during the visit to the doctor’s office that my pathology report from Monday’s surgery had arrived. We were all surprised they were completed so soon.

I apparently had a total of 20 lymph nodes removed during my lymphadenectomy last week, according the excerpt shown above. Two of those nodes were “Cloquet’s”, meaning (as I understand it) that these were deep nodes, generally located closer to the organs in the abdomen. These were clear of cancer, which I took to be a mildly good sign, in that the cancer had not yet gotten closer to other organs, although my cursory literature search suggests that using Cloquet’s nodes as indicators of likely (or unlikely) metastasis of organs is not clearly established.

Of the other 18 lymph nodes removed from my body and analyzed, five (5) were found to contain metastatic melanoma, meaning the cancer has definitely been spreading. More worrisome was that the largest chunk of melanoma which had metastasized into the lymph nodes was 2.2 cm (nearly an inch) long in its largest dimension (the report provide no indication of the three dimensional measurements of the tumor), and that there was “extracapsular extension”. Extracapsular extension, as I understand it, refers to some of the cancer being located in tissue outside (external or “extra”) the lymph nodes. The member of the doctor’s staff we asked about this indicated that extracapsular extension was an indicator of an increased chance of reoccurrence of melanoma in people in whom the cancer had gone into remission.

The result of the pathology now changes my cancer staging from a Stage III B (it was borderline III A/B) to a Stage III C because of the additional lymph node metastasis. See

Another result of the pathology, one which I am willing to look at as a good thing, is that it has now resulted in an effort to discuss adjuvant treatment and clinical trials for new anti-melanoma drugs with me next early week instead of at the end of May as originally scheduled. I figure the sooner we can start on treatments, the better my long term prognosis.

While I had hoped for better news, I take solace in the fact that I have exchanged messages with and heard of a number of folks with similar staging who have been successfully treated for their melanoma. And getting my treatments started sooner rather than later only improves my chances, I think.

At this point I think my next update here in my blog will be the middle of next week, after my initial consultation and its ramifications have sunk in.


Foul Humors   May 11th, 2011

Maybe it’s no coincidence that the last fiction book I read was Ken Follett’s “World Without End”, which I started the day of my sentinel lymph node biopsy on April 1st. What now, in retrospect, seems poignant about the book was one of the main character’s struggles during medieval Britain with the common accepted wisdom of medical procedures. One of the procedures frequently advocated by the monks and men of knowledge in the book was bleeding the patient to drain the foul humors believed to be causing illness. For the most part, modern medicine has disposed of that practice, but I find it curious to be sitting here, writing today’s blog post, with a plastic tube attached inside my body, connected to a small plastic container clipped to my shirt where my “foul humors” are now collecting.

The drain installed in my body to drain off fluid build-up

The drain installed in my body to drain off fluid build-up

Okay, so I know it’s not really “foul humors”, but instead a way to provide a release for excess fluid build-up in my body now that part of my lymphatic system has been removed, but still – there’s an interesting sort of historical analogy here, as cancer treatment is still a rather inexact science (at least for many types of cancer, include the melanoma I have been diagnosed with).

As I wrote in my previous posting, I was scheduled for a lymphadenectomy this past Monday – a surgical procedure which is intended to remove potentially cancerous lymph nodes before the cancer can metastasize in other parts of the body.

At Mass General Hospital the morning of my surgery

At Mass General Hospital the morning of my surgery

I arrived by foot at nearby Massachusetts General Hospital (MGH) just before 6am on Monday, May 9th, with my family in tow. It didn’t take long for me to get processed through the surgical pre-operative routine and get parked outside Operating Room 3 (and MGH apparently has 50 operating rooms). By 8am or so, I was already under the proverbial knife in OR3, wielded by MGH’s chief oncological surgeon and melanoma surgical specialist, Dr. Kenneth Tanabe.

At 10:30am my wife Linda received a call from Dr. Tanabe explaining that the surgery went well, and there were no blatant signs that anything was amiss with the lymph nodes they removed. I personally did not regain full consciousness until sometime around 12:30pm, in the recovery unit, where I stayed until they found me a bed for the night in Ellison 7 – one of the wings where patients stay and are taken care of while staying at the hospital. I didn’t get moved from recovery to my room until about 4pm – it took a while to find me a free space.

I did discover a few things during my recovery that I had not expected. The first was that during surgery I had had a catheter administered to keep my bladder drained. I had never had a catheter before, and the ramifications were rather distressing – urinating hurt like the dickens due to a roughed up urethra, and, as I later discovered, my bladder lost its usual elasticity for a while, resulting in extreme abdominal pain later that night. That has fortunately resolved itself now.

The other thing I learned was that I had been lucky with the two prior excisions in that my post-operative wound pain was pretty minor. That was definitely not the case this time around, as my lymphadenectomy had resulted in the internal bruising (or possibly even some cutting) of muscle tissue in the area where my lymph nodes were removed). The consequence of this is significant pain anytime my abdominal or groin region tenses up, which in turn is caused by coughing, throat clearing, nose blowing, sneezing, attempting to lift my right leg, and transitioning between horizontal, sitting, and standing positions. Once I am sitting, lying down, or standing, the pain ends up going away. The unfortunate aspect of this is that I am having to utilize pain medication at present, which is not something I’m particularly fond of, as it makes my thinking a bit fuzzy (and, let me tell you, writing this blog entry coherently while on pain meds is a wee bit of a challenge).

Anyhow, shortly after I arrived in my room, my wife and children, and my “little sister” LaDonna – all of whom had been waiting for me in the Gray waiting area at MGH since 12:30pm, were summoned, and kept me company for a while.

Me in my hospital bed later in the day after my surgery

Me in my hospital bed later in the day after my surgery

I was in good spirits when they arrived, but pain was definitely a source of discomfort. LaDonna ended up leaving around 5pm because she needed to catch a train back to Maine, and my family left shortly thereafter to grab some dinner. It is definitely convenient living only a 5-7 minute walk away from the hospital, as Linda ultimately ended up making three trips to the hospital on Monday.

My nurse Natalie got me on my feet while Linda and the kids were away – it was painful getting up on my feet, but liberating in a way as well, since I could walk (shuffle) with only a modicum of pain once I was vertical.

Linda came back to visit for a bit after dinner, and then I had the rest of the night to myself – and my roommate Jack, numerous nurses, and non-stop sound and light. How anyone is supposed to get any rest and relaxation in a hospital I don’t know. Between the taking of vitals every four hours, the sounds of coughing from a roommate with pneumonia, constant alert tones and announcements, and my own bladder and pain management issues, I managed all of about three hours of fitful sleep.

When the chief resident came in the next morning to tell me that I was free to be released because I had managed to walk around the prior night, I felt greatly relieved – it was an emancipation of sorts. I didn’t think I would have been able to manage another day in the hospital (and not just due to the lack of restfulness, but also because of the unsuitable food – no real viable low-carb options – everything had starches and sugar, which would only serve to make me feel worse physically).

The process of getting back to our apartment was a bit of a conundrum. We had originally discussed the idea of having a taxi take me back, but I couldn’t see how it would possibly work considering how difficult it was for me to transition between sitting and standing, never mind that taxis don’t have a lot of leg room. So I opted for the more practical but tedious approach of shuffling my way back to our apartment on foot. A walk that would normally take about five minutes took closer to thirty minutes due to my slower and more meticulous pace. But the end result is that I am now safely back home, and after a pretty decent night’s sleep (7 hours with only one interruption), I am feeling “not too bad”. My right thigh is definitely swollen and tingly, but I have a nurse from the visiting nurses’ association (VNA) arriving shortly to remove my bandages and help me with wound care and other recovery advice.

So, what comes next?

I should have biopsy results from the removed lymph nodes by the beginning of next week.

The drain will stay attached until the bulb has collected only about 30cc of fluid for any given day (yesterday it was nearly 300cc for the whole day, and started off mostly blood, whereas now it is clearing up as the fluid collected has transitioned to lymph). The predication is that this will take a few weeks to achieve, so I will need to deal with the drain in some way until then.

And, I have my first round of clinical oncology meetings on May 31st to see what faces me next in terms of adjuvant treatments – immunotherapy with Interferon, most likely. That gives me about three weeks to learn all I can about cancer cellular biology and melanoma treatment possibilities so I can better understand my options.


When I was first told I had malignant melanoma, one of the leading questions bouncing around my dazed brain was “why me?” And when questions like that start invading one’s consciousness, the answers are rarely satisfactory, and are, in fact, frequently disturbing.

You feel guilt for having somehow contracted a deadly disease, but can’t figure out how you might have contracted it – was it that sunburn in Costa Rica in September 2008? Or too much time spent at high altitude in airplanes? Maybe something we ate at some point? Or too much wine? Or not enough? Could it be our low carb lifestyle? Or did that actually prevent the melanoma from cropping up earlier?

You wonder what you could have done differently so that the diagnosis had come back clean instead of laden with cancer. You wonder if you could have acted sooner to somehow head it off at the pass. You worry that since you got the disease, your loved ones might be susceptible to a similar diagnosis. And, if you’re a person of faith, you might view your diagnosis as some sort of spiritual test.

And this series of “why me?” and “what if?” questions can drive you crazy, stress you out, and depress you – none of which will help one overcome the disease, and could make it even worse, if the theories of mental attitude affecting physical wellness are to be believed (and I do believe them).

After dwelling on these thoughts for a while, and doing some research, which confirmed that even the really smart medical people really don’t know exactly why some people get melanoma and others don’t, I came to the conclusion that the reason I ended up with cancer boiled down to chaos theory, or, in other words, “shit happens” (with apologies to my kids for using the “s” word).

As I have been learning, cancer is the result of cell mutation, which, in simple terms, results in particular cells growing out of control either because they have mutated in a way that accelerates cellular reproduction (mutated oncogenes) or disables the cellular controls that prevent such rapid reproduction (mutated anti-oncogenes). Dr. Siddhartha Mukherjee, author of “The Emperor of All Maladies: A Biography of Cancer” equates these mutations to the controls of a vehicle: the accelerator pedal being pressed all the way down (the mutated oncogenes) or the brake pedal failing (the mutated anti-oncogenes).

In the case of melanoma, the type of cell that has gone nuts – at least initially – is a melanocyte, a pigmented skin cell, hence the classification of melanoma as a skin cancer and warnings by folks like the World Health Organization warning about sun exposure being the cause of skin cancers including melanoma.

However, according to a friend in the field of cancer treatment research (thanks David S.), the mutation can come from any of a number of causes, including, but not limited to, sun exposure, chemicals, or simply the build up of random errors that occur during normal cell division. So, in other words, we’re back to “shit happens”.

In a way, the idea that my cancer was a random, unpredictable occurrence is a bit of a relief, as it allows me to not have to worry about the past, and instead focus on the future.

And that future involves surgery next Monday, and then some sort of treatment – most likely immunotherapy – starting at some point in June.

The surgery I am having on Monday morning is called a “lymphadenectomy”, and involves the removal of all of the lymph nodes in the area where my sentinel lymph node was removed, namely in the region of my right groin. More specifically, I’m having an inguinal lymphadenectomy, “inguinal” referring to the groin and lowest lateral regions of the abdomen (per Merriam-Webster’s dictionary). The surgery will take between two and three hours, and will result in several incisions ranging from the middle/upper part of my right thigh up to my lower abdomen – probably an area about 12-18 inches high in total.

The reason for the lymphadenectomy is that it is believed to be a way to surgically treat cancer which has spread to the lymph nodes but has not metastasized beyond them. The lymph nodes appear to act as a dam of sorts to the cancer cells, collecting and preventing them from easily spreading in the rest of the body, but at some point they can get overwhelmed and then the cancer cells will spread to invade organs and other parts of the body. So, by removing the affected lymph nodes surgically, the hope is that it will also remove the cancerous cells (see, e.g., WebMD). There will be a biopsy performed on all the lymph nodes removed during the surgery to determine how wide spread (if at all) the cancer was in my lymphatic system.

As a bit of background, the lymphatic system is part of a body’s immune system, including the fighting of bacteria, viruses, and even cancerous cells. The clear fluid carried in the lymphatic system is called “lymph”, and lymph nodes act as a filter against foreign materials. There is a good overview of what the lymphatic system is and does here. A diagram from that link showing the lymphatic system and the lymph nodes can be seen below:


Of course, no externally induced physical changes to a biological organism can be made without some sort of side effects, and for lymphadenectomies, the side effects will likely include swelling from the build-up of lymph, now that the lymphatic system has been disrupted by the removal of all the lymph nodes in a given region. This swelling may or may not be temporary, and is called lymphedema. Dealing with the swelling and lymphedema in a leg would require the use of a pressure stocking. Also, during the recovery period after the lymphadenectomy, until the body has adjusted to the lack of particular lymph nodes, will also require the use of a drain to remove excess fluid build-up. The drain I was shown during my initial appointment to discuss the lymphadenectomy was about the size and shape of a hand grenade.

I expect to be kept in the hospital for a couple of days – probably getting released on Wednesday, and already have a follow-up appointment scheduled at the end of the month, followed by meetings with the clinical staff at the hospital to determine my adjuvant treatment, which will likely involve immunotherapy. Unlike chemotherapy, which involves using cellular toxins to try and kill cancer cells in the body, immunotherapy tries to boost the body’s immune system to help attack any cancer cells remaining in the body after surgical removal of cancerous bits (lymph nodes in my case).

On a separate note, the skin graft on my wide excision has, for the most part, failed to bond. Blood formed under part of the skin graft and prevented it from grafting properly. The downside to this diagnosis is that it will take longer for the excision to heal, and I will have a noticeable scar on my right thigh, but both of those items are, in my view, not significant in comparison to the greater challenges I face in fighting my cancer.


As I watch and listen to the royal wedding of William and Kate an hour after it happened, I am reminded that part of traditional wedding vows includes the phrase “in sickness and in health”. This phrase was part of my vows nearly 22 years ago and part of the vows of the royal couple today as well.

When we get married we mouth these vows without any sort of sense of what the “sickness” part entails, but if we are true to them (and sadly, wedding vows are too frequently broken), it’s situations like the one life has sprung upon me that put such vows to the test.

While it is the cancer patient’s lot to have cancer, the impact of the disease is not limited to just the patient – it affects all the people around them in myriad ways. And whether those people can cope with the news of the disease and its on-going treatment is a very individual and personal thing.

For family it’s a bit different though, as they have a something akin to an obligation to the patient – an obligation born of blood relations and/or vows. And on them falls much the burden of helping the patient through the difficult times, often without consideration for their own sacrifices.

In my case, the decision (and freedom) to get treatment in Boston resulted in total change for my wife and children. They had very little time to pack up what was needed back home on the island of Bonaire, shut down unnecessary things, and arrange to live for an indeterminate number of months in a new but temporary home. (And even as I sit here writing, all three of them are busy building a dozen pieces of IKEA furniture because I’ve been told by my doctor and wife to not stress my thigh skin graft any more than it already has been and that means staying away from furniture building. This past Tuesday I was told by the doctor that the skin graft was comprised, and things were not nearly as good or bad as they could be, but that I needed to be even more careful with it than I had been.)

I am fortunate in that I have the flexibility to uproot myself (and my family) and move to wherever is best for my survival, but for many that is not an option, and might involve regular long drives or settling for less than perfect treatment options closer to home.

While my physical suffering has yet to really start (and I don’t consider my initial biopsy surgery to have been onerous, although the lack of real mobility I have due the healing skin graft is very frustrating), I already don’t know how I would have been able to manage even some of the stupidly simply things, like being driven to appointments or getting supplies for our new apartment, if it weren’t for my wife and my in-laws (whose hospitality I relied on pre-biopsy as well as during the week my wife was back home getting the kids and cat ready for the move north).


The Richter Family at my father's 75th birthday party, three days before I was diagnosed with malignant melanoma. I'm the tall white/gray/blonde haired guy in the back left, and my daughter, wife, and son stand in front of me and to my left.

The Richter Family at my father's 75th birthday party, three days before I was diagnosed with malignant melanoma. I'm the tall white/gray/blonde haired guy in the back left, and my daughter, wife, and son stand in front of me and to my left.


Considering how much more challenging the times ahead are going to be, the burden on my family and friends will only increase, and I fear at times during my treatments I may not be as gracious about appreciating their efforts and sacrifices as I should be. So, in advance, let me express my thanks to you and all caregivers and loved ones of all people dealing with cancer.

I would like to close this post with a few references that might help those who have been diagnosed with cancer or find themselves with loved ones or close friends who are diagnosed.

First, Lance Armstrong’s LIVESTRONG foundation offers a free guidebook and planner/journal set to anyone who requests it – all you have to do is pay shipping. The contents of both volumes is incredibly informative and helpful, and offers both the cancer patient and his or her caregivers information on all the various phases of cancer – from diagnosis to treatment to being a cancer survivor. If you learn of a friend or loved one who has been diagnosed, get them a copy. (Angie – thanks for pointing me to this as well!) More details at The LIVESTRONG web site (which can be reached via the previous link or at also offers one-on-one support for cancer patients and caregivers, including counseling.

Next, if you or a loved one have been diagnosed with Melanoma, a good foundation for understanding the cancer and its treatment can be found in Dr. Steven Q. Wang’s “Beating Melanoma: A Five-Step Survival Guide”. There’s not a lot of in-depth detail, but when you’re in the initial throes of coping with a melanoma diagnosis, it’s quite useful in helping set priorities. As a companion to the book, I also suggest the web site, which addresses all the basics of melanoma.

Another book I am reading is “The Emperor of All Maladies: A Biography of Cancer” by Dr. Siddhartha Mukherjee, which I am about a third of the way through. The book provides an absolutely fascinating – and terrifying – history of cancer and how people have perceived cancer and come up with treatments to combat cancer over the ages. Mukherjee is an oncologist at the Dana Farber Cancer Institute here in Boston, and interleaves his own modern-day observations of treatment with the historical approaches to cancer treatment (or lack thereof). The part I find disquieting is how new cancer treatment really is, and how much still is unknown. But I believe it is better to have a realistic understanding than an incorrect one, or worse yet – no understanding at all.

I also have several textbooks on cancer biology that I plan to delve into early next week. More on those once I have digested them.

Finally, for friends and family of cancer patients, you may want to take a look at “Help Me Live: 20 Things People With Cancer Want You to Know”, by Lori Hope. I have just started reading the book, and while the focus is on the author’s own experience with breast cancer, and interviews with other breast cancer patients and survivors, I find that a lot of the issues that Hope addresses apply already to those with other forms of cancer. That’s because even though various cancers can be radically different from one another biologically, the emotions and physical aspects of treatment share similarities. Interestingly, one of the first things that Hope addresses is what she has learned is the number one fear of cancer patients – namely abandonment.

And the topic of abandonment brings me to my summary today.

A lot of the external worry and concern is about the cancer patient’s well being, but one should never forget the family and close friends who provide the immediate support network for cancer patients. It is quite possible for such caregivers to feel unappreciated and possibly even abused or scared and sickened during the later stages of a loved one’s cancer treatment. Some people will not be able to deal with someone they care for having cancer, possibly being terminal, and/or suffering for extended periods of time. And that is perfectly understandable, but one way to help those that provide care is to make sure they have a support network of their own. If you wonder what you can do for a friend or loved one with cancer, check in on their family and caregivers separately and provide them whatever support you can.

And, I should add that “support” does not mean getting sad around the caregivers and offering sympathy, at least not while the cancer patient is alive and reasonably well. Those sorts of empathic gestures, while well intended, only raise the specter of unhappy endings. Do something positive and life affirming instead, even if it’s something as simple as letting caregivers that you are there for them too.


I find I have been remiss in promptly relating the latest news in my on-going challenge in dealing with my cancer diagnosis, and for that I apologize, as I have received a number of anxious messages from friends.

Let me start this entry by saying that the scans I had last week came back as “not too bad”. One might normally see “not too bad” as being “not so good”, but in this case, it was a major relief.

The brain MRI I had “came back clean”, which, far from suggesting I am empty-headed, confirms the radiologists found nothing suggesting the cancer had entered my brain. This is a truly good thing.

With respect to my chest and pelvic CT scan, let me first say that after dealing with two huge bottles of barium sulfate (flavored but chalky – I recommend the berry over the banana) over an hour to help provide better details of my innards, I was then also injected via an IV with an iodine contrast solution to help show my vascular system in the scan.

The injection of the contrast is best described as a surreal and totally uncomfortable process, as it causes a hot flash to rush through your system, causes mild dizziness, a weird flavor in your mouth, and – the most disconcerting thing – a flash of heat to one’s sphincter and urinary system making one wonder if there will be some sort of unintentional release of unwanted substances (fortunately, that did not happen).

The whole hot flash, from start to finish lasts less than a minute, but it’s really not fun at all. I’m curious if there’s any similarity to a menopausal hot flash – comments from folks who have experienced both are welcome.

Unfortunately, I will have to repeat the CT scan and iodine contrast and barium sulfate ingestion again in three months. That’s because the CT scan found that I had mildly enlarged bilateral axillary (in both armpits) lymph nodes – 1 cm in my left armpit, and 0.9 cm in my right armpit. Not enough of a concern to deal with now, especially as my lymphatic system is a bit upset after the removal of a lymph node, but that will need monitoring down the road, with the aforementioned repeat CT scan three months from now.

On a similar note, the CT scan also found that the lymph nodes in my right groin were enlarged. Again, not surprising, but these will be taken care of by my May 9th lymphadenectomy, which will remove all the lymph nodes in my right groin (and thus the reported enlarged lymph nodes there as well).

So, that was the “not too bad” part of my scan results. The good part of the CT scan was that no other signs were found that the cancer had entered my organs. In other words, no metastasis (pronounced “metahss-tah-sis”, by the way). It should be noted that the CT scan can only show if things are enlarged or somehow misshaped or of the wrong size – it cannot detect cancer, so my scan showed all my organs were normal in size and shape. I will take that as most excellent news, and cause for mild celebration (which I will defer until I am reunited with my wife and kids in less than a week).

The other thing that happened to buoy my spirits was word that we had been approved for the apartment in Boston we wanted to rent, located in the West End of Boston on the 37th floor of a 38 floor building and great views. Better yet, the apartment is a mere 7-10 minute walk from Massachusetts General Hospital. The apartment provides me with a comfortable and convenient “nest”, and should be a rather grounding and stabilizing support during my upcoming cancer treatments.

On top of that, today I managed to get approved for a Zipcar account, even with my Bonaire driver’s license, with Zipcar cars being available in the garage in our apartment building. For those of you not familiar with Zipcar, it’s a highly automated car rental service which allows you to rent a vehicle for as little as an hour, and has dozens of pick-up and drop-off locations in major metropolitan areas.

After a lot of phone calls and e-mails, I managed to get our rental furniture scheduled for delivery to the apartment this Wednesday, and with the help of a dear friend (thank you LaDonna!) and a couple of hired strong men, I will be moving into the apartment in Boston on Thursday, with my wife and kids and cat arriving from Bonaire on Sunday afternoon.

It’s nice to have all these pieces come together so well (although not easily) after all the stress and anxiety I went through last week.

At this point, other than weekly appointments to check on my skin graft (which is healing, but slower than I would like), I don’t have any serious medical issues to deal with until my surgery on May 9th.

However, it doesn’t mean I will be silent here on my blog until then – I have a number of issues I want to raise with respect to dealing with cancer, including perceptions, labels, books, cellular biology, adjusting to unusual environs, and alternative treatments, among other topics.

So stay tuned…


(Warning: The squeamish are hereby forewarned that this post features a few graphic images of wounds.)

As I related two posts back, the revelation (if that’s what you call it) that I had malignant melanoma was a real shocker.

I let myself be guided by wiser heads than mine, namely my dermatologist-in-passing (I had “borrowed” my father-in-law’s dermatologist to get my mole removed since I was thousands of miles from home). He referred me to a plastic surgeon at Concord Hospital, who was able to squeeze me into his schedule in just under a week (versus the three weeks or more it normally takes), and on March 29th, dragging my mother-in-law along to help me remember what was discussed, I learned that my melanoma was very high risk, but that my overall health was good (considering the melanoma), and that I had no obvious tactile or symptomatic indications that the cancer had metastasized (spread into my body).

I was scheduled to go into surgery three days later to get a wide excision and a sentinel lymph node biopsy, both of which would be used as a means to determine if the cancer had, in fact, invaded my body.

I did ask the doctor why a plastic surgeon would be performing my procedures, being naturally curious after have just finished seven seasons of Nip Tuck on iTunes a few months prior. The doctor explained that plastic surgeons, while presently associated mostly with cosmetic procedures, are in fact specialists in working with and understanding skin and how it works. Further, plastic surgeons got their start as regular surgeons back in the time of World War II when many soldiers would come home from the war with terrible wounds – wounds they only survived due to the introduction and use of penicillin. Those surgeons started to develop and specialize in techniques to help with the disfiguring woulds of the returning soldiers, to help them return to some sort of normalcy. And, in fact, a plastic surgeon, Joseph Murray, ended up receiving a Nobel Prize in medicine for performing a skin graft between identical twins.

The doctor added that it was really only after the wars ended that this new breed of “plastic surgeon” turned to elective cosmetic procedures as a professional venue, since their skills and knowledge of how skin functioned were inordinately useful in that context. At the same time, that same knowledge continued to be useful in addressing real medical problems, including skin cancer such as melanoma.

His answer was excellent, and made eminent sense as well, since the wide excision I would be subjected to would require the skill of an expert skin specialist, i.e. a plastic surgeon, to repair.

The Wide Excision

The purpose of the wide excision was to take a minimum 2 centimeter (about .8 inches) of skin from around the site on my right thigh where the melanoma was found to excise any nearby cancer cells that may have been missed in the initial mole removal.

The healing wound from where the mole was removed, two weeks prior to the wide excision. The wound diameter is about 1.5 centimeters across.

The healing wound from where the mole was removed, two weeks prior to the wide excision. The wound diameter is about 1.5 centimeters across.

In my case, since the area of removal was already about 1.5 cm across, it would mean a disc of about 5.5 cm would ultimately be cut out of my skin, and sent to the lab for pathological analysis to determine if any cancer cells remained. In fact, I was told the wound was ultimately about 7 cm across as the skin sagged after being cut.

In turn, in order to fix this gaping wound in my skin, the doctor would remove a small disc of skin, full depth, of about 3-4 cm across, from my belly at the waist (under where my belly hangs over, by just a little bit, of course), and use that as a skin graft to “plug” the wide excision after using a “purse string” (a sub-dermal suture) to tighten the flesh over my right thigh. Additionally, as I found, more skin from my waist line was removed in order to create a properly seal that could be sutured.

The result was a roughly 8 inch suture line along my waist line that looks like it could be a C-section scar (were I a woman). One positive effect of this skin graft removal is that I have had, in effect, a tummy tuck and now look marginally more svelte.

The area under my belly from which the skin graft for my thigh was removed, resulting in a bit of a tummy tuck.

The area under my belly from which the skin graft for my thigh was removed, resulting in a bit of a tummy tuck.

A week or so later, the wide excision area was healing well, although the image below may not reflect that to the non-medical observer.

The area of the wide excision on my thigh, one week after surgery, with skin graft and blue dye visible.

The area of the wide excision on my thigh, one week after surgery, with skin graft and blue dye visible.

The skin graft see above (the purple/red/pink flesh) is about 3-4 centimeters across.

The Sentinel Lymph Node Biopsy

The second part of the surgical procedure was something called a sentinel lymph node (SLN) biopsy. Lymph nodes are a key part of the body’s immune system, and research and statistical analysis and correlation has suggested over the last decade or so that melanoma (and some other cancers) are more survivable if it can be determined which lymph nodes closest to a source of cancer would be responsible for that site on the body, and then analyzing those lymph nodes (via biopsy) to see if they have cancer cells in them.

The closest lymph node in use is referred to as the “sentinel” lymph node, as it “stands guard”, as a sentinel would.

The sentinel lymph node is detected using an injected radioactive isotope (hurts like the dickens when it’s first injected, but the sting and burn passes quickly) and then using a gamma camera to track the path of the radioactive isotope through the lymphatic system to see which lymph nodes it collects in first, which in turn indicates the sentinel lymph node(s).

The surgeon, later the same day, will use a hand-held gamma particle sensor, in conjunction with an injection of a large particle blue dye, to locate the sentinel lymph node, both visually and via instruments so he can remove the lymph node, and perhaps one or two others in the same region.

Typically, but not always, for a melanoma on the thigh, like mine, the sentinel lymph node will be in the area of the groin on the same side of the body as the melanoma. That proved to be the case for me, and I have a nice suture at my right groin as a a memento.

The area from which the sentinel lymph node was remove, near right groin.

The area from which the sentinel lymph node was remove, near right groin.

The blue dye that is injected to help the surgeon visually locate the sentinel lymph node after he locates the general area with the handheld gamma detector is quite tenacious, and it’s likely to leave a long time, even life-long, “tattoo” on the skin where it was injected and then coursed through the lymphatic network.

Another side effect which is merely temporary is that it might turn one’s urine green (yellow plus blue), as was my situation (and no, I have no pictures of this rather interesting bodily output). The green faded to a tinge, and then completely away after several days.

After the Surgery

After the wide excision and SLN biopsy is recovery, which requires minimal strain on all the surgical sites. In my case that meant mostly bed rest with my leg horizontal, and the use of two crutches for several days. A week and a half after surgery, I’m now down to one crutch to try and minimize any potential stress to the skin graft.

More importantly, some number of days after the biopsy – I was told it would probably be 7-8 days – the lab returns the results of the pathology on the skin from the wide excision and the SLN(s).

My  results came back last Thursday, six days after the day of surgery:

The lab results on my wide excision and sentinel lymph node.

The lab results on my wide excision and sentinel lymph node.

The lab result on the skin from the wide excision was clean. I was not nearly so lucky on the sentinel lymph node – it contained an approximately 2.0 mm malignant melanoma.

Coming Up Next

As a result of the above lab pathology, I was told the next step was most likely to get more specialized surgical help to remove the remaining lymph nodes in my right groin in the hopes that the cancer could be removed surgically, and that that would probably need to be followed up by some sort of treatment depending on how much (of any) other cancer was found in the other lymph nodes.

As I don’t reside in the U.S., I’m not geographically bound, and when I explained this to my doctor and asked for a recommendation for the best possible place in the U.S. for further treatment, he referred me to a doctor at Massachusetts General Hospital, which our subsequent research has shown to be one of the top cancer facilities nationwide, with a dedicated melanoma program.

Tomorrow morning I have my first appointment at Mass General, to learn what the near-term future holds for me. The anxiety is almost (but not really) worse than the disease.

(Note: An excellent technical paper on the subject of sentinel lymph nodes, given to me by my very excellent plastic surgeon, is entitled “The Role of Lymphatic Mapping and Sentinel Lymph Node Biopsy in the Staging and Treatment of Melanoma”, by Wayne K. Stadelmann, M.D., from “Clinics in Plastic Surgery”, Volume 37, Issue 1, pages 79-99, January 2010 (link to the abstract and place for purchase – not cheap at $31.50, but incredibly informative if you’re a science geek.)