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 http://jake.me/Z879. The LIVESTRONG web site (which can be reached via the previous link or at http://www.livestrong.org) 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 http://www.aimatmelanoma.org, 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.

 

Coming Out of the Cancer Closet   April 24th, 2011

It’s tough to believe it’s been almost a week since my last missive here, but getting ready for the move to Boston, followed by the actual move itself, was time and energy consuming. As I sit here writing this, my family (cat included) are winging up from Atlanta to join me in this new urban adventure. None of us, other than via hotel stays, has ever lived in a sizable city before, so there will be a lot of adjusting to things like city sounds all day long, not having a vehicle of our own, and being beholden to a landlord (the last time we rented anything was about right years ago, and that landlord was pretty much uninvolved).

On the plus side we have a wicked fast Internet connection, an unlimited number of dining options, have a great view from our 37th floor apartment in the West End of Boston (see end of this post), and a Whole Foods super market around the corner.

And this move of ours to a city to be close to the place where I am going to be treated for my cancer brings me to one of the subjects of today’s musings, namely how people think of cancer.

Feeling Alone In Cancerdom

When I was first diagnosed almost five weeks ago I felt I was alone in the world with my diagnosis, and likely to die very prematurely.

All we ever hear about cancer in the media tends to slant towards the negative, and feed our inner worry demons. Cancer is equated with near-certain death in the common consciousness. Furthermore, people who have cancer are commonly viewed with pity and sympathy, or ignored because people don’t know how to react to such a potentially deadly illness. At least folks don’t seem to erroneously think that cancer is contagious, so the cancer afflicted are not put into virtual quarantine or shunned for that reason.

Presumptions are made that all people with cancer are actually suffering from that cancer, because that’s what we see on TV. Television cancer patients have no hair on their heads, they look weak and exhausted, and are frequently in hospital beds with their families hovering around waiting for finality to take place. While that can and does happen, as I have been learning, that is only one possibility of many, and only in some circumstances and situations (including later phases and stages of cancer progression and treatment).

Certainly in my own case, at the moment, other than still waiting for my skin graft to heal, I am in great overall health, and I feel fine, and am not suffering physically from the cancer that is likely to still be in my body. I am also continuing to work as time permits, as my mind is as lucid and capable as it was before my diagnosis. The fact I was still working came as a shock to some of my family members, as, after I had cancer. I had to explain that having been diagnosed with cancer did not mean I was automatically feeble and tired – quite the opposite, as I feel energetic and am twitching to do things.

Of course, it weighs heavily on me that I may still have some microscopic denizen on the verge of wreaking havoc in my body, completely outside my control or ability to see or feel it. And it bothers me a lot that all of my upcoming treatments – my lymphadenectomy surgery in a couple of weeks followed by a lengthy treatment of injections to boost my immune system – are all being done in the hopes that they will remove whatever cancer cells I may or may not still have in my system, without any real guarantee that such treatment will be successful or that such treatment is in fact even totally effective. There is, fundamentally, a lot of hope involved here, and as I previously discussed, statistics play a large role in the determination of the method of treatment. Here’s hoping that I end up on the good side of those statistics.

Coming Out

During the three weeks after my initial diagnosis, and while I was waiting for my biopsy to be completed, I made a critical decision. That decision was to go public with my situation regardless of the result of the biopsy because it seemed to me that there were not many first hand accounts of people who were recently diagnosed with cancer, and considering how innocuous looking the mole I had removed was, I wanted other people to take a serious look at their skin so that they might have a better chance at early detection as well. It has become pretty obvious from my diagnosis that cancer can strike anywhere at any time and I want to make sure my family and friends do what they can to avoid health problems and worries of their own.

In fact, my decision to go public was motivated by a photo a good friend on Bonaire had sent me in February, showing all the bandages on said friend’s face after having several suspicious moles removed. Fortunately none of those moles were cancerous, but I figured if my friend was brave enough to send out photos that made them look like a mummy-in-training, it was a good idea to take my skin more seriously. Had I not done so, my malignant mole would likely not have been removed for months, and I would have cancer irreversibly invading my entire body, and not just a small (hopefully) part of my lymphatic system. Using the same logic, I figured my going public might help someone else find a problem sooner rather than too late.

In retrospect, going public with my diagnosis and not-so-good biopsy results was probably one of the best things I have done in the last month (other than getting that mole removed). The reason is that as a result of my coming out of the cancer closet I learned that I was not alone in my diagnosis, and that survival was a not uncommon outcome after treatment. That was an enormous relief, and buoyed my spirits and outlook.

In fact, I started hearing from many friends that either they had had cancer themselves, or that their close friends and family had had cancer in the past, suffered through treatment, and in many cases went on to live a long life (or were still living). Sure, there also have been the not so pleasant outcomes, but just knowing that there were others with melanoma who had beaten that cancer into remission was very much a relief.

What I found interesting was that with so many personal reports of cancer in people of all age groups, there is so little information out there from current cancer patients and cancer sufferers. Cancer is definitely not an isolated disease – it appears to be incredibly common, in fact. But we just don’t hear much about it.

We tend to hear a lot more about famous cancer survivors, but very little about what they were going through while being treated for cancer. And perhaps that’s not as surprising as it should be, because there’s a stigma associated with having cancer, as if it’s something to be ashamed of – something that should be hidden away and not discussed for any number of reasons.

Well, I’m going to try and tackle that stigma here in my blog in the hopes that what I’m going through will help others who have been or will be diagnosed with cancer of some type, and to let them know they are not alone out there with their diagnosis and their worries.

I will add that by going public, the outpouring of support, love, positive thoughts, good karma, and prayers I have received has been overwhelming and stunning. Having gone through this, I cannot imagine the alternative: suffering silently without that healing support and love.

Mind you, going public with cancer does have another effect – namely that you become responsible to all of your friends and family to kick that cancer in the butt so you don’t let them all down and disappoint them and their faith in you. So, that’s my plan – to beat this foul thing down both for myself and my family and friends.

In Closing

In closing, let me share a photo that inspires me at present – one of the views from our new temporary apartment in Boston:

Partial view from our Boston apartment at dusk

Partial view from our Boston apartment at dusk

 

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…

 

As I write this, I’m sitting in our rental car heading south from New Hampshire to Chelsea, Massachusetts. My ever patient and supportive wife Linda is driving as the skin graft on my thigh is still too delicate to allow me to use the gas pedal and brake adequately.

Our destination this morning is the Massachusetts General Hospital imaging facility, where I am schedule to get a brain MRI scan, and a chest and pelvic CT scan – one right after the other. The purpose of these scans is to determine whether the cancer that was found in the lymph node that was removed a couple of weeks ago has metastatisized. In plain language, the scans might help determine whether there is detectable cancer in any of my organs.

Sign on the 9th floor of the Massachusetts General Hospital Yawkey Center - 9E is the place for me

Sign on the 9th floor of the Massachusetts General Hospital Yawkey Center - 9E is the place for me

 

The oncological surgeon we met with a couple of days ago explained that these sorts of scans have pros and cons. The pro being, of course, that it could detect cancer in a non-invasive manner. I thought a con might have been the radiation or electro-magnetic effects, but as he indicated, the cons are mostly human in nature. Statistically (and in cancer detection and care, statistics are the guiding principal as I’m learning), he said, only 3% of scans actually turn up cancer in the scans, but in around a third of scans the radiologist might see something questionable. That in turn can cause anxiety in the cancer patients when the doctor reports back that he or she thinks the scans are okay, but is not entirely sure. It then becomes an issue of trust between the patient and the medical care givers of whether some possible anamoly detected in the scans needs to be investigated further or not. However, that 3% positive detection rate is still worth it, and as it was pointed out to us, the scans are a standard diagnostic after the next surgery I’m scheduled to have in order to help determine what adjuvant (additional) treatment I would be started on (with the best guess being a long regimen of interferon).

The surgery I’m schedule for on May 9th is called a lymphadenectomy, and its purpose is to remove all the lymph nodes in the vicinity of my right groin, where the cancer-containing lymph node was removed during my biopsy. This is a surgical attempt to eradicate the cancer before it has a chance to spread, as it is believed that the lymph nodes act as a temporary road block against cancer getting into the rest of the body. At the same time all of the removed lymph nodes are biopsied as well, and according to the doctor, there is a 7-22% chance, statisically, given my biopsy results, that more cancer will be found in some of the removed lymph nodes. Either way the surgery would be followed by the adjuvant treatment I mentioned above, as an additional safety measure to attempt to help my body eradicate any cancer still in my body.

However, that might also all be moot if the scans I am getting today do detect metastasis. In the unlikely event that happens, then my surgery might well be cancelled, as removing all the lymph nodes in my right groin would no longer be necessary to prevent the spread of cancer, and another treatment path would need to be determined.

I have been learning over the last couple of weeks that cancer detection and treatment is still a very hit-or-miss sort of thing. There appears to be great understanding what cancer is (basically, cells that for some reason start replicating in an uncontrolled fashion), but beyond that, things get a bit foggy. There are apparently a number of different cancers which in turn respond (or don’t) to various treatments. My form of cancer, melanoma, is one of the ones for which the treatment options are pretty limited. I’ve been told that chemotherapy, which is a treatment that many people associate with more common forms of cancer, is not particularly effective with melanoma. Needless to say, I am slowly ramping up to start my own research into melanoma so I can be better prepared to understand my options at the crucial points in my treatment.

The lack of complete understanding of how to eliminate cancer, or even detect it, is part of what makes cancer such a terrifying disease. We expect doctors to have all the answers, but in the case of cancer what they really contribute is more knowledge and experience, and thus provide the best statistical chance for survival. It then becomes a matter of trust, and a matter of hope that your trust is well placed. That said, Linda and I feel very good about our medical team so far, but blind trust and faith is not our way, so we will be working to improve our knowledge as much as possible so that I can be a fully informed patient.

One of the two barium sulfate containers I need to drink before my CT scan

One of the two barium sulfate containers I need to drink before my CT scan

As I submit this post, I have just completed my brain MRI – 45 minutes in a claustrophobic tube where I was not allowed to move my head at all, but given time to occasionally clear my throat. I’m now downing two containers of a barium sulfate tracer solution that will assist in analyzing my upcoming chest and pelvic CT scan.

 

The scan test results, or, more accurately, the analysis of the scans, should be completed no later than Monday. Until then it’s a matter of waiting anxiously.

Adding to the anxiety is that we found a nice short-term rental apartment just minutes from Massachusetts General Hospital, but are now waiting for our rental application to be approved. We should know about that by Monday as well. Having the apartment is important because if things go as planned, I will have regular appointments at the hospital starting at the surgical date going forward, and if I am put on interferon, I will be needing daily intravenous applications for the first month of treatments followed by self-injections three times a week for a long time thereafter.

Wish us luck.

 

(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.)

 

I have now had about three weeks to come to grips with the fact that I have melanoma, a malignant form of cancer.

The first step after received the call from the dermatologist was a mild form of denial, as in “this is not real, this is not happening to me”. That lasted only a few hours.

The next step, after educating myself about the seriousness of malignant melanoma, was high anxiety, where my breathing became difficult, my heart would pound, and I would get lightheaded and disoriented. That lasted about two days, on and off, and was not at all helped by the cold I managed to catch at the same time (which may explain some of the fuzzy headedness).

My thoughts during those initial days wandered the spectrum of trying to figure out what I all needed to do to settle my affairs if mortality was truly upon me, to convincing myself that the subsequent biopsy would naturally show that I was fine because I had caught the melanoma so early in its growth.

It helped that I spent the five days after my diagnosis at a culinary resort, learning to improve my culinary skill with my wife and children. Being in a kitchen is something I find incredibly therapeutic.

The next hard part was when I dropped my family off at the airport to fly home to Bonaire and headed back to New Hampshire by myself, in advance of a couple of doctor’s appointments.

Less then a week later I found myself in the hospital watching a radio isotope course through the lymphatic network in my thigh into my right groin lymph nodes, and later that day entered surgery to remove a couple of chunks of skin and the targeted lymph nodes (more on that procedure in a day or two).

My wife Linda came back up the day after my surgery, and has been with me since, proving to me that one of the best ways to cope with the stress of bad news is to have the support of loved ones nearby.

As we approached the seventh day after surgery we knew that we would soon be getting the biopsy shortly, and we had been careful not to simply assume they would come back clean, and at the same time left the possibility on the table that the fight wasn’t nearly over yet.

When word came back that the lymph node had cancer in it, it was still a shock, however. That was three days ago, on Thursday afternoon. Since then, we have been on an emotional rollercoaster, subject to sudden outbursts of what we have been called “the weepies”.

But interestingly, the weepies have not been as a result of the fear of mortality, but instead as a response to the incredible words and acts of support from friends and family as we have spread word of the diagnosis. The number of tissues we have literally blown through is stupendous. And, to our own amusement, we have occasionally found ourselves laughing as well as crying at the same time, as one of us has set off the other, with absolutely no self-control possible.

The Real Point Here…

And this rather long introduction brings me to the actual “meat” of this post, namely the yin/yang of adversity and opportunity.

My elder brother, who lives in Berlin, Germany, sent me a very touching e-mail (and brought on the weepies), with a very poignant point, namely that when situations like the one I am going through occur, it makes you reevaluate what is important in life, and what it not, and that that changes your view of the world.

I have always been a believer in the idea that when life throws you a challenge, it also provides opportunities for positive change. What those opportunities are may not always be inherently obvious at first, but time and exploration will reveal them.

It may be tough to imagine what the opportunities are from learning you have a dangerous form of cancer, but I have already come up with several for my particular situation:

– As a result of my choice to not suffer my illness in silence and solitude, and instead sharing my woes with my friends and family, I have learned how many people have cancer survival stories of their own (or of close family members), but which they have not shared with others. Thus, my being open about my condition might help spread awareness that cancer is not something that needs to be kept hidden, which in turn will let future cancer patients feel less scared about their own odds.

– In the last few days I have learned how amazing our friends really are, something that may be easily overlooked as we all too often take our friends for granted and become complacent about our friendships. The tears I have been crying as a result of the weepies when reading messages from our friends, and the calls I have received have been tears of wonder and joy at the genuine love and care our friends have shared, and as such, those tears have been enormously cleansing and stabilizing. While not an actual opportunity, per se, having such a wonderful network of friends is a truly positive thing, one that can only help with healing and balance. Hopefully other friends who at some point end up with unpleasant diagnoses will see this as well, and realize they can count on the support of their friends too.

– I have also wanted to find a good writing project for some time now, but have lacked motivation and inspiration. Being diagnosed with cancer now gives me the time and motivation to write, and share my experiences and observations, with the hope that my writings will get other people to understand that cancer can affect anyone – either as a cancer patient or friend or family of such patients. And, more importantly, that it is not the end of the world when you are diagnosed with cancer (and can even be the start of something new and exciting – or at least interesting).

– While my photographic pursuits (I am presently in a Masters of Fine Arts program in Photography) have been focused on culinary and nature photography, this new adversity and the things I have been learning about are inspiring me to design image series that are centered around making cancer a more approachable and real subject. After all, it is said that knowledge is power, right? More on this as I develop my ideas and concepts.

I think the above examples are just the tip of the iceberg of opportunity brought on by the adversity of learning I have cancer. I have no doubt that I will find even more opportunities from my current situation that will help me turn cancer into just another (survivable) challenge in life that helps me grow and expand my horizons and potential.

 

The phone call from the dermatologist came as quite a shock three weeks ago. I felt like I was having something of an out of body experience as he explained that the reason for his call was that the mole his staff removed some twelve days prior was a malignant melanoma, and that I needed to get help immediately for a sentinel lymph node biopsy and wide excision.

I knew skin cancer was a bad thing anyhow, but when I mentioned the diagnosis to my wife, Linda, and saw the color drain from her face, I gathered I might not fully comprehend the extent of my problem.

Further research indicated that melanoma is the worst kind of skin cancer there is, and that it has a rather high chance of being symptomatic of cancer in the lymphatic system, especially if not detected soon enough. And once entrenched in the lymphatic system it’s only a matter of time before the cancer invades one’s organs (which is known as metastasis).

I hoped it had been caught soon enough. After all, the mole that I had had removed had only been present for only a short time. Granted, it had grown rapidly – from zero to about 7-8mm in around two months, which is why it originally had me a bit worried – enough so that I wanted it removed. And I only noticed it because it was in a rather obvious location on my right thigh and seemed to be a little different from my other moles, but not in any really obvious way.

My mole one week before it was removed. It later turned out to be an amelanotic malignant melanoma.

My mole one week before it was removed. It later turned out to be an amelanotic malignant melanoma.

If the mole had been on my back or other non-obvious spot on my body, I would still be ignorant of my condition, and thus a step closer to permanence of the truly bad sort.

I was also fortunate in that the dermatologist had the same idea I did – namely to get the mole analyzed in a lab to make sure it wasn’t something bad.

Of course, that wasn’t the result that came back:

Excerpt from the diagnostic report on my mole pathology.

Excerpt from the diagnostic report on my mole pathology.

It’s not obvious from the above text, but the mole was a rare kind of melanoma, an “amelanotic” melanoma, meaning it did not have any pigment, and therefore none of the visual warning signs that the tissue was potentially cancerous. As a result, the statistical survival rates for amelantoic melanoma are not very good because they are usually identified far too late – many months or even years after they have formed. In my case, however, the hope has been, and still is, that two months was early and soon enough. We’ll see, as the lymph node biopsy (which I will discuss in a separate post) came back positive (for cancer), which is actually rather negative from where I sit.

The Moral of This Story

I am only 46 years old, in good health, only mildly overweight, with no known genetic predisposition to cancer.

Granted, I live on a Caribbean island, but the reality is that I’m a bit of a mushroom, spending almost all of my time indoors working, cooking, eating, playing, and sleeping. I average less than an hour or two a week outdoors, so regular sun exposure is not a likely contributor.

I did, however, get a really bad sunburn on my right thigh from a full day of white water rafting in Costa Rica in September 2008. Could this have started then? No way to know, and I’ve been told that there is a body of thought among a small group of cancer specialists that there is no sustainable correlation between sun exposure and melanoma. The fact that melanoma can appear on (or even in) any part of one’s body, even one that never sees sunlight, lends some credence to that possibility.

What I can tell anyone reading this is that you should be on constant vigilance for any new growths on your body, whether odd looking or not. And if your gut suggests something is wrong, run, don’t walk, to your doctor’s office and have it looked at. And insist on a lab analysis on any part of your skin that is removed. Better safe than sorry.