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.