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 http://www.BitsAreCheap.com.

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.

Modesty

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 http://www.aimatmelanoma.org/aim-for-answers/stages-of-melanoma/stage-iii-melanoma.html.

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.

 

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:

(From http://penile-cancer.ca/pc/lymphadenectomy.htm)

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.

 

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…