I’ve failed to complete this post a number of times. It’s laden with caveats and nuances and limited to just my learning, but it’s important that everyone becomes familiar and adept at how to support the cancer patient. But I think it’s applicable to any patient whose life is threatened.

Thanks to science and medicine, many Americans get well into middle age before a friend becomes gravely ill. We know how to talk about in hushed tones amongst ourselves but barring previous misfortune have no idea how to properly respond. But even more importantly I found many adults flounder to respond because they haven’t had to grapple with overwhelming senses of despair and helplessness and the secret they dare not verbalize that they and their family are just as vulnerable. The last thing a patient needs is for their friends and acquaintances to respond from a crazed, fearful place. For some it’s just too much and they can’t even show up. For others it’s becomes about them, offering to help just to avoid facing what I describe above. Plenty of others want to help simply because they don’t know what to do. Some people figure it out quickly and get with the program. A small few have the life experience to approach it the right way, while some other expert humans are simply so comfortable accepting that life is change and emotions are life that they’re naturals.

So, the first part of being good to the patient is to get your own head together. Be mindful of how this is making you feel. Channel your fear of this happening to your family into a celebration of being alive. Accept that feeling helpless isn’t a shortcoming. Recognize despair and grief are part of the pantheon of life experiences. You do this because you don’t want to make any of this about you. Support and love must flow to the patient and fear and discomfort must flow away. If you are not good at expressing love and gratefulness to your friend, learn how to do so quickly.

Recognize that everyone that knows the patient is distraught and overwhelmed by feeling helpless and there are often very few ways to help. The closer you are to the patient the stronger these feelings are. If there is some help to give that provides the giver a sense of satisfaction the patient’s inner circle always get first right of refusal. There’s a wonderful article by a breast cancer patient about this you should read that boils down to “comfort in” and “dump out.”

If you ever “want” or “need” to do something for the patient recognize that this is something you need, and your needs are inconsequential to the patient and the care givers. Reframe your thinking to what could benefit the patient and caregivers. Definitely do not insist that you do something or expect special consideration without approval. Again this is not about your trying to minimize your anxiety, this is about the patient and the caregivers having the best possible days.

Even just saying “How are you?” is an ask. I know it’s an American catch-all phrase to start a conversation, but now is not the time to use. When friends would ask me, my first thought was “Im doing like shit, fuck you very much for asking,” even though I knew it was an innocent, inexperienced question. When my friend Lori Dorn had breast cancer she requested people ask the much more manageable question: “how are you today?”

Create a new habit such that when you’re thinking of them tell them by just saying, “thinking of you.” and don’t expect a response. No matter how bad I was, it was always nice to see such a text. Don’t do it too often (daily) but also don’t go to long without letting them know you’re thinking about them. The patient may reply and want to talk which was always nice, but even when they don’t, they’ll always read it, smile and know they aren’t forgotten. (But again do this suitably, don’t hound the patient.)

If you want to write something longer to the patient like a letter or email, that is great, just avoid asking direct questions or anything that makes the patient beholden to respond and always make it clear this is just something you wanted to share with them by ending “no need to reply.”

Do not assume what the patients and caregivers need and want. My wife likes making meals as a way to enrich the family. Every meal that was brought over denied Molly one of the few ways she had left to provide health to us.

Of course every patient and caregivers are different. Some may greatly value pre-made meals. The further out you are from the inner circle the more thoughtful you have to be to find out ways to help. The primary caregivers are often too overwhelmed to prioritize finding tasks for each person that offers help.

You could write the offer in an email or call, but understand the family may be overwhelmed with offers of help and don’t have the time to give thoughtful declines. Take a non-answer as a “no” and don’t belabor the situation by making the offer repeatedly. Yes it sucks having unresolved feelings of helpless, but again, this is not about you.

Nonetheless keep trying to find a help vector. Perhaps stop by the house with flowers or chocolates knowing you may just be leaving them at the door. But maybe it’s an okay time and you’re invited in. Look around the house. Does something need fixing? Is the sink full of dishes? Just do the dishes. Is laundry piled? Does a child look like they need to get outside? Offer then to do this or come back later. Don’t expect to get to see the patient or get word of thanks. Be like a fairy that silently helps and sneaks away and I’m sure you’ll feel releaved you helped.

Or wait for the rare moment when the family says how you can help. Molly tweeted one day:

Molly Ditmore 🦁🌳🍋 on Twitter

@tedr was the recipient of a generous person's blood earlier this week. Help us pay it forward and donate blood. Thank you.

and suddenly we’re getting pictures of friend all over the country giving blood. Other friends who had been frustrated their previous offers to make me feel better were declined organized 4 hours with a bloodmobile and invited anyone they knew was a friend of mine. They did all this without asking one thing of me. They just made it happen and I got see all the pictures. Thanks to Edgar Blazona for organizing and all my friends that were able to pitch in. During a crazed time for us it was deeply touching.

Edgar Blazona on Twitter

That's a wrap. @tedr and @mollybloom. And to my followers my tweet storm is officially over.Seeya blood van #donaTed

Ted Rheingold 💛 on Twitter

Huge thanks to all the friends that gave blood today. Of course they turned into a grand time. 40 people!

Avoid using the phrase “let me know if there’s anything I can do.” First off, it’s an ask of the patient or caregiver. You’re asking them to come up with something they could do to help. Secondly, most of the time we found the “anything” offer meant, “… if I happen to be free at that time.” Everyone has kids or jobs or travel plans and mostly can’t come running on a moment’s notice at an awkward time. Unless you’re really ready to cancel getaway plans or take a day off from work, don’t say “anything.” Instead say “Im hopeful I can find a way to help you.”

People always offered to do the more meaningful services such as taking patient to hospital or bringing food. Consider offering to do the dirty work: clean the kitchen, take out the weekly garbage; weed the garden; do the laundry and you’re much more likely to get an exasperated yes.

If the patient is conscious, avoid “protecting them” by asking questions of the caregiver. If you want to know if the patient would want something ask the patient. Don’t give even more work to the caregiver.

Recognize the caregivers and people closest to the patient are fully extended trying to keep the family going. Whatever despair, grief and helplessness you feel is nothing compared to theirs. Figure out how you can help the caregivers. The patient gets all the attention and the caregivers get all the work plus having their lives turned inside out. Are you close to the caregivers? Then tell them you’re thinking of them. Obsess over how their pain could be reduced. Patients rely of the well being of their caregivers. Help the caregiver and you help the patient.

Words of encouragement along the lines of “you’re a fighter,” or “be strong” never resonated with me. The closest my experience has been to a fight is me getting punched in the face over and over again. The science and treatments fight the tumors, and my purpose is to withstand it all as long as I can. Turns out this sentiment isn’t just me. I saw three threads yesterday from people saying “stop acting like McCain can fight his way out of glioblastoma.” I know you’re dying to say “but fighting to live longer is what fighting is,” but I suspect you say that more from fear of death than sympathy for the sticken. So listen to the stricken. Wish them peace and happiness. Let them know how important they are to yoy and cheer them on always.

Ryan Clinton on Twitter

A brief note about that Obama-McCain tweet folks understandably loved & the language we use to talk about cancer. (1)

(((Michael Koplow))) on Twitter

Something on my mind in light of the John McCain news: the rhetoric about fighting and battling cancer is unhelpful and misleading 1/

Molly Ditmore 🦁🌳🍋 on Twitter

Telling people with a cancer diagnosis that they will beat cancer is dismissive of their experience and their reality.

Of course, if the patient tells you they are fighting, then cheer them of with their own words.

Don’t tell the patient about your other experiences with the illness. The patient is not here so you can unload your own frustrations. I know it’s human nature to talk about that which is similar to the current moment, but fight that unbeneficial urge. No patient wants to hear about you aunt that died of the same cancer. My uncle died of renal cell carcinoma am I going to tell you about that? No. One aside is I did want to hear any story of someone with stage IV cancer that was told they would die and managed to live. That is always inspirational to me. But don’t come at me with some “inspirational” story of someone that survived a treatable cancer. They’re only inspirational to people who have never been challenged, not those that are dying.

Don’t lie to the person, “you’re going to beat this.” or “I know you can do it” because it makes you feel better saying it. Get into the headspace of the patient. Listen to them. Cheer them on with what they say is hard for them. Let you know you love them and want to be there for them.

Ted Rheingold lives in San Francisco and has been living with cancer since his Stage-4 diagnosis (clear cell renal cell carcinoma) in April, 2016. Here’s written frankly about his experience in this blog, Season of the Witch. You can follow him on twitter @tedr.

Etiquette and the Cancer Patient was originally published in Season of the Witch on Medium, where people are continuing the conversation by highlighting and responding to this story.

There’s a lot I haven’t been telling you, but I’ll tell you (most) everything now.

Reveal 1: My larger tumors started swiftly regrowing even though the smaller ones kept shrinking. We saw this first on a CT scan in February and it was dramatically confirmed in a PT/CT in April. This wasn’t a surprise to Molly and I as we saw my quality of life was backsliding. Many of the odd symptoms I had before my diagnosis had resumed and they were getting worse week by week. I was rapidly losing weight because my stomach was likely contained by the tumor growth. I could no longer walk the hills in my neighborhood without a long rest and my symptomatic night sweats came back. We privately guarded the possibility that my only life saving treatment was no longer saving me.

By mid-April my oncologist confirmed that my immunological treatment Nivolumab (Opdivo) was no longer effective on my worst tumors, but it’s original positive effect confirmed I most likely have kidney cancer (renal cell carcinoma). Surgery and radiation are not options for me now due to the size and spread of my tumors. My doctor wanted to get me on the newest generation of Cabozantinib (Cabometyx). Cabozantanib is a targeted VEG-F inhibitor that slows the creation of new blood vessel growth in renal cell carcinoma. It comes in pill form which I take daily and has far fewer side effects than traditional infusion chemo. It’s another innovation scientists and oncologists unlocked in the last 15 years and was only FDA approved for my treatment last year.

My pain and side effects from the tumor growth was so uncomfortable I was rushing to start the new treatment. But this is America and all major treatment has to be approved by one’s insurer, and they rejected the original request. While this was very stressful, as I felt worse each day, my oncologist calmly and urgently played this out like a card game. He always expected I would have to resubmit on appeal, and he would play my Stage-4 trump card. This worked and my request was finally approved. But in-between, I went 5–6 weeks with no treatment … and things got pretty dark.

For a couple weeks my tumors hurt so much I was in pain all day. If it wasn’t for a 2:1 CBD:THC cannabis edible, I would have been hard pressed not to go back on opioids. My inability to add weight became a top concern. My sleep was exhausting. I was mostly stuck at home to avoid overextending myself. My tenuous mortality kept slipping back in to my thoughts. The neck-grabbing reminder that the savage mutation in my body will continue doing all it can to unknowingly (I would hope) destroy me. Forcefully reminding me my only chance to outlast my cancer is to live long enough that a cure is discovered that clears me of my tumors. As I said, it got dark.

So it was wonderful relief when my body started responding right away to my new chemo-in-a-pill treatment. The pain and night sweats stopped immediately. Within a few days I had hunger pangs and an appetite again. I’ve been gaining weight again and people have started telling me “you look good” again after a couple months of not hearing it often. Fortunately I haven’t been hampered with most of Cabometyx common side affects, but since day one I’ve been chronically fatigued and still am. Fatigue like sandbags. Fatigue that laughs at caffeine. I’m fine otherwise, just tired. To counteract it, I get LOTS of sleep and take Ritalin or a natural treatment when I need it. I’ve been told to expect more side effects come on as I continue taking the Cabometyx, but my current experience is a cake walk compared to getting traditional chemo. In fact even during those bad dark weeks I was still putting in work hours, seeing friends and playing games with Mabel.

Hopefully I haven’t lightly shook my readers too much. For us, this experience is what it is. What’s happening now is our journey to experience on the way to our destination. I’ve already refined my life’s focus to family, home and purpose (more on purpose below) and frankly, I’m not giving away my shot (Thank you Molly Ditmore). I’m not going to let a little tiredness hold me back.

Which all leads me to reveal number two. If you’ve been following me lately you’ll know FastCompany published my business case for the fully interlocked profit-from-purpose business model and TechCrunch published my analysis of the ImpactVCs backing them. Day or night there’s always someone looking at my spreadsheet of supporting data on Impact VCs.

The trend of sustainable for-large-profit-from-purpose businesses is already here and accelerating quickly. As COO of Tala I saw how quickly a massive market can be created by serving the financially underserved. At Tala we invented smartphone-based lending for emerging market consumers and received massive demand from creditworthy consumers previously ignored by the traditional financial service providers. With it’s global focus and great Series B, it’s very conceivable Tala can benefit a billion customers worldwide and make a lot of money doing it.

Which all brings me to …

Reveal 2: I been working with Bloom Credit for 3 months now as a very active Sr. Advisor. Instead of serving the large market of unbanked and financially underserved overseas, it’s serves the large financial market of mis-served Americans that are actually creditworthy, even though it’s not represented in their credit score. Bloom uses first-of-its-kind credit history modeling to help lenders expand their loan portfolios to reach the tens of millions of credit-eligible consumers their models dis-serve. Credit providers today (mortgage, credit cards, personal loans) consider a rejection the end of relationship and offer no guidance on how applicants could be eligible. That’s where Bloom comes in. We identify the credit-eligible people, the people with prime-like repayment habits, and help them take positive actions to improve their score. The more consumers we help get the credit services that are right for them, the more the lenders will want our leads, the more successful Bloom will be. It’s a fully interlocked profit-from-purpose where Bloom’s purpose drives it’s profit and it’s profit drive it’s purpose. If Bloom concedes too much to the lenders, consumers will lose their trust in us. If Bloom concedes too much to the consumers, the lenders will reject our leads. The revenue model throws off the most money over the long term because of, not in spite of, everyone being treated fairly.

Perhaps you can understand this isn’t just a job to me, this is a purpose. I’d personally like to show that true profit-from-purpose models aren’t just a possibility, but a reliable, repeatable defensible business model. I’m confident large profitable businesses can throw off as much social or environmental benefit as well-endowed foundations. And that thousands of such businesses can exist concurrently. Here’s a closing tip: The trend of purpose is coming like a tidal wave … why not get in front of it?

There’s a Lot I Haven’t Been Telling You was originally published in Season of the Witch on Medium, where people are continuing the conversation by highlighting and responding to this story.

Sat April 9th, 2016

Emergency room MD: “You’re cancelling your Hawaii trip. Scans show a number of lumps on your organs. We’re going to check you into the hospital immediately. Looks like Lymphoma. [I later figured out this was code for “we sure hope it’s lymphoma, because that's much more treatable than metastatic carcinoma.”] I told our Hawaii friends we couldn’t make it, huddled with family, got more scans and cell samples at the hospital and hid at home from the world and my future.

Tuesday April 14th

My sister, a pediatric hematology oncologist that lives in Philly with her family, flies out to be with us. She was the first person I called after Molly on Saturday and within minutes she said she was flying out.

Wednesday April 15th

Phone call from my new oncologist taken in my kitchen. I’m home alone. She’s anxious … get’s right to the point before I even know what the point is. “I need to tell you pathology identified your tumor as a carcinoma. I’ve set up an appointment for you Friday. Speak with you then.” I scribbled notes on a handy Chinese menu. “Carcinoma, not lymphoma.” No one had wanted to prep me if I in fact did not have a treatable form of lymphoma, so I absentmindedly kept moving about until I found myself looking into a wall mirror back at my tumored self, realizing I was in grave danger. Carcinoma, not lymphoma.

Friday April 17th

Walk into my oncologist’s cramped office. My wife and my sister are with me. Mabel’s at pre-school. The doctor re-angles her monitor but I can see it’s my PET scan - and I see the same image I saw through the technician's window after getting the scan - the one I tried to ignore because there were jarring color blobs aside the grey outlines of organs and body interior. From where my sister was sitting I could tell she saw it and knew what I was going to be told.

Oncologist tells me that I’m stage 4 metastatic carcinoma. Growths had formed on my kidneys, lungs, omentum, adrenal gland. (It was also on my pancreas.) I numbly sat through this diagnosis holding Molly’s hand. Since my doctor didn’t offer, I had to ask her — with as much strength as I could summon — what are the survival rates for people in my situation. Then the bomb explodes. “There’s no cure,” she says. Primal emotional horror panic. Mentally stumbling deafly through a mortal blast. I climbed onto Molly’s lap because I want to crawl inside her and I kept cry-screaming out “what are we going to do? What are we going to do?” in an inhuman voice. Molly just cried with me as I recall. She didn’t know, but she was strong. My crying sister said it could be years not just months. My doctor excused herself and left us in her office. She must have to do this on a weekly basis. I remember keying in on a family photo on her desk, with her two daughters, one she has already told me was Mabel’s age. My brain silently spoke to them. Their parents live. I orphan mine. I don’t remember going home.

Late April-May

I prioritized much of my waning strength to get our finances ready for my disappearance. Molly and I had already created a Living Trust, but since then, items hadn’t been explicitly placed in it. In California if the deceased has items of value not in a trust, it can take up to a year of probate for them to be valued by the state and be distributed to recipients. I sat in my lawyer’s conference room on a couch, a very chemo-sick man, doing all I could to keep my faculties straight. I used to do all my own paperwork because of their hourly, now I was behoving them to please manage it all. Just do it all. I wasn’t sure it would get done before I was.

Chemo wrecked me as much as the cancer. Molly had now dropped her life and become my primary caregiver. As it got worse I wondered if I could be as strong as her if our roles were reversed. Within a month I was raced to the emergency room because I was, in effect, starving. Unexplained weight loss was a symptom before my diagnosis and once the chemo started I stopped eating. I was infused with 30 lbs of fluid weight, stabilized, discharged and lost it all within a couple weeks. I kept daily records of how much I ate. Each one was a sob story. My life’s whole mission became trying to eat 2,000 calories a day. I could rarely do it. I’d struggle to eat a simple meal over hours of time and then vomit it all up later. I stopped leaving the house. I could barely walk up the stairs. I couldn’t read a book to my daughter at bedtime. I couldn’t take my clothes off at bedtime. On my off weeks from chemo I still felt awful, depleted, nauseous, wrecked by opiod-induced constipation.

I was in a death spiral. I was dying. How can I make my daughter fatherless? What would life be like for Molly for the next 40 years? A friend came often and captured videos of my life story. I so wanted my daughter (and maybe her kids) to know about me. I wanted to make videos of me sharing the life guidance I’d been planning to give my daughter. I was bereft I wouldn’t be there with a shoulder when the trials of puberty, mean girls, boys and determining her life path came along. I promised myself I would sit and record them alone with my phone, but I never even tried. I knew I’d just record myself blubbering in sadness. My family was with me constantly. I tried to thank them whenever I had the headspace.

June

Molly would put me to bed before 9pm and I’d lie alone suffering uncontrollable crying jags. I was on anti-depressants, anti-anxiety meds, pain killers, but after keeping it together all day, I couldn’t stop thinking about my death, their lives without me. I imagined people at my memorial service, looking at each other without me. I imagined it was amongst redwood trees or on a Pacific bluff. I imagined life-like human-size great blue heron’s cutouts standing among the attendees, and frangipani blossoms everywhere. I’d hear certain songs and mentally add them to my memorial service playlist.

I often pondered the philosophy of cancer because it’s hard to make sense of it. What’s the evolutionary benefit of killing your host when that kills you too? Why does cancer win to die? I was surprised to find so few results on Google. I asked my sister who has studied cancer for 20 years and she said it would be a good post for my blog. Cancer isn’t a virus or bateria. It’s a mutation. A mutation that happens with great regularity amongst some but not all mammals and it mutates in one of a recurring common or rare manners. What is cancer’s purpose. Is it to cull the herd? Is cancer non-evolutionary (i.e. not created by natural forces)? Is cancer still evolving? Is it’s end goal to become transferable from person to person? Tasmanian Devil populations have become decimated by a transferrable facial tumor disease. Are human cancers mutating in half of all humans for the chance to find the variant that leads to transferability? Will cancer jump the transferability firewall? What is the philosophy of cancer?

Molly and I kept a very high-level gallows humor to get us through. I thought it would have been hilarious to shamble along in a shirt say that said “I’m dying here,” or “This is killing me,” or “OMG, dying!” I finally shared my thoughts about my funeral with Molly one night. Nothing was surprising because how could we not be thinking the same thoughts. We’ve both always been very grounded. So we just sat on the couch and shared what thoughts had come to mind.

Not to slight my family, but the novelty of dear and far flung friends visiting the house usually gave me my best energy of the day. We’d talk for hours on end as if they had no where else to be in their busy lives (they did). And they were the conversations of life, experience, family, adventure, friendship, love, and loss. I always made them tell me their problems, the harder the better, as it made me forget about mine for a bit. It never felt like the last time we’d talk, but I’d share how scared I was I wouldn’t be there for Molly and Mabel and would people look out for them during and and after. I’d often collapse after the visitor left having used all my life force to connect with them. Sometimes I’d pass out and they’d show themselves out. Molly asked me to not exhaust myself and leave her and my family to manage me. It was bad. It was really bad.

I was responding awfully to chemo. It was having no affect on the mature tumors in my body and destroyed me seven days straight. Some people do chemo on Fridays so by Monday they can be back at work. I wouldn’t even get a good day before my next weekly treatment. I battled every single day to eat and keep down 2,000 calories. Lack of appetite, changed tastebuds, nausea, vomiting, excruciating constipation all conspired against me gaining a pound. Some days cannabis would give me the munchies like a glazy eyed dead head, but up it would come hours later as my body had no way to process it. Watching all those calories go into the toilet bowl was like Tom Hanks in Castaway watching Wilson float way from his raft. I was watching my life force get away from me.

In July our whole focus was getting to our family place in New Hampshire for maybe one last time. It would be immediate family only and a dear friend offered to pay to fly Molly, Mabel and I private because I could barely make it. A couple weeks beforehand I had darkly started envisioned being stuck lying on the couch all day, like I was in SF, and having the sad eyes of my family on me all day long. In fact my family got a second couch for the house because I’d need one constantly. I wrote a long message to the family not to expect anything out of me and that I’d just be happy to be there.

Late July-September

If you’ve been following my story, you know a couple weeks before we tried a strategic hail mary. My oncologist at UCSF put me on a recently FDA approved immunological treatment Opdivo (Nivolumab). I placed it’s effectiveness odds at 10%. (It only worked on 1 in 3 kidney patients and I gave myself a 1 in 3 chance of having kidney vs a different urological carcinoma.) My doctors never speculated on potential results because it’s decided amongst them that offering false hope isn’t fair. My oncologist was hopeful though because DNA tests of my tumor (yes, I have the DNA sequence of my tumor now, as well as my human DNA) showed a PD1 checkpoint inhibitor marker. Cancer is a spontaneous mutation of human DNA, but it does often mutate the same way and he saw the PD1 as indication that if had kidney carcinoma then Opdivo has a 33% chance of educating human white blood cells to override the inhibitor and attack the tumors as if they’re any other foreign receptor.

Suddenly before New Hampshire I was sitting up more. I was eating better and walking around. In New Hampshire I joined meals, I went swimming (in a wet suit) and I surprised myself when I lifted my daughter straight up into the air. Just weeks before I couldn’t even lift myself up.

Now

I’ve gained some powerful emotional powers (super powers) in what I’ve been calling my second life. Most all my deep-set hangups died with my first life. A number (but not all) of my grudges, entitled expectations, self-assumed responsibilities, judgements are simply gone. I have no FOMO. There isn’t an event I’ve heard of since I’ve recovered that I wish I would have been at. I’m simply content to be alive and living my life. I have no bucket list. Life is the bucket.

Meanwhile I’m entirely at peace if I die. I am ready for life to end at any point, yet also ready to use each day, month, year I get towards a long arc of purpose of my life. I still carry the cancer in me and though the tumors are beaten into scab-covered lumps, if society broke down, and I couldn’t get Opdivo, I’d be a dead man walking. I had to lay with death. I had to accept it’s vacuum, it’s mortal horror. I had to get my life ready for it’s end. I had to envision the conscious reality of the people I know and love moving on without me. If tomorrow is my last day or I outlive you all, I’m content with how it all worked out.

Enjoy every day. It may be your last.

[Ted Rheingold has written about his stage 4 metastatic carcinoma experience in the Medium publication, Season of the Witch. You can follow him living his second life on Twitter @tedr.]

As I Lay Dying was originally published in Season of the Witch on Medium, where people are continuing the conversation by highlighting and responding to this story.

I grew up thinking sea wolves were nicknames for daring navy captains or submarine warfare.

Maybe it was because of the early coin-operated video game.

The 1980s Sea Wolf game cabinet was captivating.

Though the game play left a lot to the imagination.

There was also Jack London’s novel, which I never read, but knew the cover.

And the black-and-white 1941 film of London’s book with Edwin G. Murrow.

“Jack London’s great novel of terror afloat!”

Then there was a 2009 mini-series, that I’ve never even heard of but Google Ranks highly.

A search on Wikipedia finds over 30 “Sea Wolf” entires in 6 different site categories

There are 5 classes of U.S. submarines dating back to 1913 have been “Seawolves” and there’s a British navy missile system

Wikipedia’s other “Sea wolf” instances include sports teams, nicknames of famous people, more movies another novel and monsters.

But the only “Sea Wolf” species you’ll find in Wikipedia is a sea lion and a fish that lives up to it’s name.

The Sea Wolf may be a great at hiding itself, but if you can keep very quiet we’re about to see what has been hiding in plain site.

Sea Wolves are a distinct sub-species of the Grey Wolf (Canis Lupus) and are highly proficient littoral scavengers and swimmers.

From National Geographic’s in-depth coverage in 2015

we learn their diet primarily consists of scavenge from the sea and sea shore. Here’s a picture of one that came to investigate a wet-suit clad photographer who likely looked seal-like.

Fun fact: Sea Wolves are the only wolves that may never see a deer in their entire lives.

Sea Wolves used to range the North American pacific coast from Washington State to the Alaskan Islands.

But they now live primarily on expanses of protected public lands of coastal of British Columbia and in small pockets along the Aleutian islands.

The following pictures from a good series of posts on Mother Nature Networks are thanks to the patient, dedicated stalking of Paul Nicklen, Cristina Mittermeier, Ian McAllister.

Like the Grey Wolf they descended from, Sea Wolves live in packs, though they scavenge and patrol in small groups as there is no big prey they need to collectively take down.

Sea Wolves can swim miles at a time. They can paddle in open water from one bay to the next or swim between islands and the mainland.

Want to see one in person?

Check out a Mothership Adventures kayaking tours

I wanted to speak more about a life trap I fell into and many others do too. The trap is to think that you have a good chance of living into your eighties. When I turned 40, I remember thinking, “well at least I have a whole second half of life to live.” Turns out my clock almost got punched just 6 years later. And in hindsight, 6 years now feels like a full lifetime to me once I came to terms with 6 months might be all I get. And yet in 4 months this year I had more profound, deeply human, meaningful conversations with friends that I had in the previous 6 or even 46 years. If you think a conversation with someone may be the last, you explore it with a force that redefines what a normal trivial conversation means.

Is your life that taken for granted that you’re okay wasting a day of it, possibly your last day? Do you want to die with thoughts of regret about what you didn’t do? Do you want to know you lived your life to the fullest even if you don’t get to live a statistically full life?

What got me on this topic was a post by the very insightful and long-term thinker Tim Urban on his Wait But Why blog. In the post he shares how even though you may think living another 50 years is a long time, it means you may have already burned through the majority of your time spent with parents, or old friends or rare treats.

As meaningful as Tim’s point is - you don’t have as much time left for important experiences as you may think - he falls into the above mentioned trap. He forecasts on the hope he’ll be very lucky and live until he’s 90. He knows he could die any day, but still takes the trap of mapping out a long life.

Why not flip the trap and treat each meaningful experience as maybe the last. Visiting with family, going to a special event, spending time with important friends, going on the perfect hike, listening to a favorite band … treat it all like it may be the last time you get to do it. Frankly it may. You may not slowly become deathly ill, you may get hit by the proverbial truck. You may not live to 80. You may not live to the end of the year. You may not live through tomorrow. So why expect anything otherwise? Is your life that taken for granted that you’re okay wasting a day of it, possibly your last day? Do you want to die with thoughts of regret about what you didn’t do? Do you want to know you lived your life to the fullest even if you don’t get to live a statistically full life?

A repeat cancer survivor, Kate Stone Matheson, advised me to carpe jugulum and I have fully assumed the mantra. Seize life by the neck with both hands and don’t let it go. What have you got to lose?

Carpe Jugulum was originally published in Season of the Witch on Medium, where people are continuing the conversation by highlighting and responding to this story.

Last week I received amazing news. My 2nd CT scan since starting on the immunological drug Nivolumab (Opdivo) showed continued shrinking of ALL my tumors. The multi-centimeter tumors further shrunk by centimeters and the millimeter tumors further shrunk by millimeters. This treatment is now described as “durable” and I’ll be staying the course barring any changes. My energy levels have increased again to the point I don’t need daily naps, though I still need lots of sleep overall and am very wary of over-extending myself as I’m still vulnerable. I’ve been easily adding a couple pounds a week of weight and getting out more.

This treatment alone won’t clear me of my metastasized carcinoma, nor is remission an option for me. Underneath my scar-covered tumors I’ll carry active cells who would regrow to kill me if they get the chance. People have lived for 5+ years on Nivolumab (since it was first tested) and while auto-immune diseases or further tumor mutation are known concerns, they are uncommon and I’m not going to give them my attention. [Welp, that just changed upon learning previously unseen conditions are on the rise as ramped-up T-cells start attacking the body in new ways: Immune System, Unleashed by Cancer Therapies, Can Attack Organs. ]

Due to the hyper-rapid innovation of immunological and other cancer treatments happening at research centers and universities around the world. I’m confident that one of them will free my body of this brutal witch. Incremental enhancements and breakthroughs are happening on a monthly basis. Just last month, a clinical test using two two immunological drugs cleared 4 people with my likely carcinoma entirely of their tumors. But now I know why my doctor is in no rush to add to my immunological load considering the new immunological side effects that are springing up.

While I still battle fatigue, getting unstuck from my previous phase has strongly encouraged me that, slowly, I can expect to get even closer to high quality of life.

Since we last spoke I kicked my 24 hour-a-day regimen of time-release morphine. Pain meds add to fatigue and guarantee constipation. They also make you squirm like the addict that you are if you forget to take a pill. But I wasn’t feeling body pain when I spaced on my meds and I wanted to understand better where I was, so I asked if I could stop taking them. Since I’ve been doing so well, which seems to be a rarer outcome than I consider it, most of my care givers respond to requests for changes with “but you’re doing so well,” which is code for “I’d hate for you to make a change and something goes south. You don’t want to know what happened to the patient I was just meeting with.” So I waited an extra month before knowing I was ready to take the risk, and only then realized what a demanding experience it is to get your body off it’s opioid addiction.

I tapered off from 30mg a day to zero over a 7 day period. Then I spent a full 9 days under a dark cold-turkey shadow … even though I started taking anti-anxiety meds to help me through it. Some nights I had persistent electrical-like shocks running through my body. On night four I backslid and scrounged up a tiny pill sliver leftover from the tapering off, I had to make the shocks stop. Finally on day nine I woke up and felt right away my body was no longer missing it. It took a full day to verify, but it was over. And I realized I had to forget any assumptions and decision I made while I was under that 9-day shadow, as they were all addiction-affected.

If someone you know if getting off pain killers get close to them. Our bodies aren’t made to handle opioid addiction. Backsliding is physiologically much easier than fighting the jones.

An important recent change is I’ve gained understanding about where I am. I’m a person with a chronic-illness, that is being treated and has a good chance of continued improvement. I’m grateful that UCSF’s oncology team included a psychologist. This therapist has helped me mentally manage the all the original awfulness and then understand how one can leave it behind. We meet often for just a standard co-pay and she works exclusively with cancer patients. She was the one who helped me comprehend and confront my grief of losing my expected life. And when I couldn’t make sense of where I was, she’s guided me to understand I’m a person with a chronic illness. As humans most of us are used to our health status either getting better or worse, or being good. We’re not used to having sub-par health and simply moving sideways. Of course this overlooks all the people persevering through life with chronic conditions who are always having sub-par days compared to the average person. For the time being I’ll be one of those people who look and seem “normal” but guarding against their internal physical weakness, and limiting down their expectations because of it. Frankly I feel like a lucky SOB just to be here, and among all the other areas of empathy this trauma has opened in me, I have deep respect for all those people never getting to play life at the easy setting because they have a chronic illness that dogs them.

Another area of deep empathy that must also be wrapped up with the PTSD of being in a death spiral, is sympathizing with how bad it is for the non-lucky SOB’s who haven’t had a breakthrough treatment turn their dire situations around. This must be like what war veterans feel like. “Why did the others die and not me?” “Why is their family left bereft while mine is joyful?” “Why are my problems becoming trivial, when theirs are about getting worse?” I can’t see a movie with an deathly illness scene without sobbing. Same goes for thinking of friends or new acquittances that are still hoping for their break. Or family members lost to what is now curable. (My uncle died of likely the same metastasized carcinoma I have, less than 10 years ago, probably just 5 years from the cure I’m on.) It’s all still too real.

I can’t decide if I want my heart to harden or to never feel so blithely about life again.

But I have to feel good about my steady improvement and lack of side effects from my treatment. If this keeps up I’ll be able to work full-time AND be an active, loving parent and husband by early next year. Right now I could only do one or the other. I got a ski pass for the winter and if this crazy recovery keeps up I’m hoping to ski some runs with my daughter before the year is over. If not this month, then 2017 is looking very promising on all fronts.

Figured Out Where I Am was originally published in Season of the Witch on Medium, where people are continuing the conversation by highlighting and responding to this story.