Thoughts on Priorities, Modesty, and Change   May 13th, 2011

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.

 

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This entry was posted on Friday, May 13th, 2011 at 17:17 and is filed under Health, Society. You can follow any responses to this entry through the RSS 2.0 feed.Both comments and pings are currently closed.

18 Responses

May 13th, 2011 at 17:35
Jessica Says:

Thanks for the new update, Jake. You’re so right about the changing of priorities — family is most important — and dropping on inhibitions. Let it all out, baby, especially let out that freakin’ cancer! It sounds like you’re handling things very well. My dermatologist (you spurred me to go for a mole check — thank you!) says there are some new med treatments available just recently for your type of cancer. I hope you’re getting them (if that’s what’s best). xo

May 13th, 2011 at 18:05
Barbara Leary Says:

I’m not so glad to hear about the path report but happy to know it came back sooner, rather than later and hope to hear that adjuvant therapy can begin very soon. XXOO to you, Linda and the kids

May 13th, 2011 at 18:49
Liz Ginocchio Says:

Jake,

Isn’t it amazing how our priorities change? I remember people would ask me about my smoking, when I was going to quit…and I would always say, “I’m not strong enough to do it on my own, when I get back to the states, I’ll get medicine”. Well I remember sitting in my surgeon’s office in the states when he said “cancer”. You know what, I haven’t wanted or had a cigarette since that day, in fact, find it rather disgusting. It is a also amazing how we miss and get joy from simple things like newspaper comics! I was thrilled to see some of my old favorites still around and sad some no longer. Amazing, is all I have to say.

I’m sorry the news is not exactly what you wanted to here, but do remember this. ATTITUDE and a positive one has a lot to do with recovery and remission. I’m not talking unrealistic gum drops & lollipops attitude, but one that I already see in you. Fortunately my cancer is not as life threatening as yours right now, but I am looking at the possibility of living with an ostomy for the rest of my life. Ok, I’ve prepared my self for that, but instead of looking at it as “the rest of my life”, I focus on positive thoughts that there will be enough good cells to reverse everything and I’m going to do all that I can to make it happen. You can do this my friend. You, your wife, your kids, all that energy, whether its 10 years or 50 years you have left, is going to make your life amazing. Simply amazing.

May 13th, 2011 at 21:05
Margarite Says:

Love! And hugs! What can I do for you? Just let me know…..

May 13th, 2011 at 21:12
Shella Brenner Says:

I am sending you continued positive thoughts from San Francisco.

May 14th, 2011 at 00:52
Dara Says:

Your post today takes me back to the conversation we had in April of 2009 while dining at Cue here in MSP. You had spent a lot of time away from home and your family that past year and we found ourselves talking about “what’s important in life”…..I remember you saying how you had learned only recently that you could live without so many of the things you once thought were so important…and commenting how I had discovered that a long time ago. You said that good health and being connected to those we love – that’s what’s important, and the gadgets that enable us to be connected when distance separates…..everything else is superfluous. Never more true than now.

So, go ahead and declare email bankruptcy. Read the comics (or not) and laugh out loud from the bottom of your belly… (after you heal up a bit). Do the things that bring you joy. Be fully present in each moment….find inspiration in the triumphs of others. Read Armstrong’s books, if you already haven’t. They will bring you hope and optimism.

I know your words will inspire others to set aside their modesty and be proactive. As a person with compelling family history (and a significant genetic risk)for colon cancer, I say to everyone reading Jake’s blog that’s hit the age of 50 or has other cancer risk: “DROP TROU NOW!!” and go get your colonoscopy…..or whatever other -opsy, -oscopy or screening is appropriate!

I am sorry that the results were less than what you hoped for – what we all hoped for. So now for some visualization – envision your favorite gaming hero (Sir Blogs-a-lot) battling the villain cancer in your body…chasing it down and vaporizing it with one strike of his laser saber, cell-by-cell,until it is completely gone (in my case it would be Ms Packman, LOL).

May the FORCE be with you, my friend!

Love and Hugs to all!

May 14th, 2011 at 06:34
jan Kloos Says:

Just to tell you that I am glad to be your friend!

May 14th, 2011 at 08:56
Jake Richter Says:

My friend Mary (to whom I credit the phrase “Drop Trou”) had an interesting and appreciated perspective on my latest pathology, namely that it was apparent my lymph nodes were doing their work, and since the cancer was only in five of them (and not in the Cloquet’s lymph nodes), it was a good sign that the cancer had been halted there.

Jake

May 14th, 2011 at 10:22
Meryl Says:

Thanks for the updates and hugs to you, Linda and kids. Jake, I am very glad to see you researching your reports, my nephew just went through a Rt lymph node dissection in March, his cancer is testicular, so I understand (as does he) how difficult it is being so up close and “personal” with the doctor’s and staff.
As an aunt I never wanted to go through “sperm donation and its harvesting” with my nephew.
I find it amazing how much the doctor’s and staff “don’t” tell you (or any patient)… so research is a wonderful thing. Our visits are usually very long as I have a zillion questions, with lots of answers..but I want them to tell me the same thing as I am reading.
I would like to echo what Dara wrote..very eloquently. Let them do whatever is necessary to attack those cells, hug the kids and Linda often..and read the comics. Laughter is the best medicine..as is support from family and friends.
Love you guys…!
Steve and Meryl

May 14th, 2011 at 10:37
Dara Says:

Indeed! Because you have good health on your side your immune system has been doing its job and sequestering those unruly cells in the lymph…your body’s way of corralling the wild beasts!

May 14th, 2011 at 18:07
Gayle Gregson Says:

Sending hugs from Gayle, Robert and Cara XXX :)

May 15th, 2011 at 09:16
Nathalie Says:

Wishing you positive news going forward, and as easy a path to healing as possible.

I think several of my emails are among those sent to a Black Hole due to an old email address for you and a new one for me. Probably moot now that you and Linda are settled in, but I was offering use of our surplus boxed kitchen supplies for your apartment.

I can still get email at the old address that you have. Let us know if you’d like a visit. Chris works in Kendall Sq., Cambridge.

Warm wishes to all of you.

Nathalie

May 16th, 2011 at 06:54
Kathy Says:

melanomamom.blogspot.com

Jake: the above website is from a young mother with melanoma. She and her husband both work in some connection with clinical trials of all sorts. I thought the site might be a resource in that respect.

Continued good wishes for positive forward progress!!

May 16th, 2011 at 06:56
Jake Richter Says:

Kathy,

Thanks for the link. I’m heading there now…

Jake

May 16th, 2011 at 10:18
Cynde Says:

Jake, thanks for the update. I’m with the others in that I’m sorry it’s not the “best” news; but I guess it’s not so bad. I know my friend who battled melanoma had joined a few groups who were going through the same battle.

Sounds like you have some good docs in that they want to “see” and get you in when you need to be seen. Not all docs ask the right questions, but it sounds like Boston Mass has some great physicians.

Can’t wait to see you this weekend and give you a gentle hug, and a big hug to Linda!

Smooooch!

May 17th, 2011 at 14:06
Lea Nichols Says:

Jake,

Elsbeth & I wish you well with this challenge. Our philosophy is to try and live each day as if it is our last keeping in mind not to disregard future possibilities.

Nassim Nicholas Taleb wrote a book “Black Swan” about epistemology that deals with the philosophy of information. He theorizes that any thing in excess is toxic, even information.

Love,
Lea

May 18th, 2011 at 05:20
Jarmila Richter Says:

Jake,

it’s great to have so many caring friends and read their insights on your situation. I can sign myself under what specifically Liz Ginocchio and Lea Nichols wrote!

Be back to you shortly,
love , mom.

May 22nd, 2011 at 09:03
Tracy Griffin Says:

Jake,
Sorry it’s been a while since we’ve been in touch. I’m glad you’re recovering so well from your surgery, and will be moving on to the adjuvant treatment sooner rather than later. I agree with some of your other comments here, your lymph nodes sound like they were doing their job!! It is amazing to me that you found this growth/lump only 9-10 weeks ago and had your diagnosis 8 weeks ago. What a frighteningly fast cancer – thank goodness you didn’t wait to have it checked!!

Thanks for sharing all of the information in your blog! I believe it will be useful to you and so many others for a long while.

Hope to make a visit to see you soon – have have some low carb yummy food in the city!

Tracy & Mike