What’s it like at the end?

Hi Jeremy,

Beyond those who have been caretakers of melanoma peeps who have passed or medical folks like me, I doubt many forum folks are going to tackle this one (though I could be wrong).  I've taken care of kids on med/surg units, pediatric and neonatal intensive care units, ambulatory offices and chronically ill/medically fragile kids in their homes since I was 19 years old.  I used to think that my most important job was saving lives.  And while that IS important, all nurses and docs are trained to do that!!!  I think it is harder to help patients (and their families) prepare for, accept and deal with death.  When I look back on my career and role in helping families deal with the loss of children from cancer, trauma, sepsis, and birth defects  – I realize that, if I was of help, THERE is where my help was most important and it is the work of which I am most proud.

The nuts and bolts?  No matter the initial cause of the infirmity – death comes to us all via the cessation of our vital functions sponsored by either our brain, lungs, or heart.  If our brain doesn't work, it doesn't direct our body to maintain proper fluid balance, blood pressure, respiration or cardiac function.  If our heart or lungs do not function….well – the result is obvious.  In cancer, much like an overwhelming infection, the bad cells take over to the point that treatments are not effective and organs cannot function as they should to support life.

Obviously, we shall all pass – from something.  When I was first diagnosed with melanoma at Stage 3, in 2003, I happened upon a Pulitzer prize winning book, "How we die: Reflections on Life's Final Chapter", by Sherwin Nuland – a surgeon.  He shared stories and thoughts on patients he had lost over the course of his career.  One of his biggest points (at least to me) was how death, and our exposure to it, in our 'modern' society is so removed from most people.  These days, most folks do not die at home.  Death has become very removed from our LIVES, despite the relentless, obvious, realistic part of life that it is.  In isolating death from our 'normal existence' it has become more frightening and foreign to many.  So, I understand your question and I think it is one most, especially those of us with life threatening diagnoses, have wondered about!

Still, I wonder why you are asking.  How did your radiation treatments work for you?  What treatment are you on currently?  How are your doing with your pain?  

I have just endured the most painful and soul breaking period of my personal experience over the past 4 months.  I have been forced to relinquish my normal life, routine, control – you name it.  It has been hard.  Yet, there are those who have dealt with much worse.  Still, when in pain and faced with the inability to be the person you thought yourself to be – it is hard to see the bright side of much of anything.  It is easy to ponder our demise. Which, is not entirely unwise, as long as we do not allow it to consume what time we have.

So…realizing I do not know your status, I hope you ~

~seek the best pain control options you can

~talk to the dear ones around you about how you are feeling, what you are thinking (about life and death)

~make the plans and arrangements you feel you need to 

~say the things you need to say

~make sure the ones you love know that you do

~and LIVE!!!!  You are not dead yet.  You are still YOU!!!  You are still here.  As am I. 

None of us are given any guarantees.  Though I have been given an expiration date on more than one occasion!!  So, I am glad you asked the question since it was one you felt the need to ask.  I am glad you are here.  I hope you are feeling as well as you can, given whatever you are currently forced to endure.  I don't know that this rambling has helped.  I hope it has not been more graphic than you anticipated.  I wish you my best.  As for me – I shall LIVE!!!  As best as I can – until I can no longer. 

yours, celeste

Hi Jeremy, I am glad that Celeste was the one to post first on this one!!! I remember back in 2013 when I progressed to stage 4 with lung and brain mets the thoughts of how things were going to end and when were a daily routine on my bike rides. Back then I just wanted to make it long enough that my daughter whose was 4 at the time, would be old enough to remember me!!! I was making videos of everything which in hind site is pretty funny now but at the time it was going to be my legacy for her. She is now 10 and those thoughts are gone but I understand where you are coming from. On the forum, in the last few years we have lost some members and it is always tough. Last year a melanoma friend sent me a link to a stage 4 melanoma group on facebook that has over 1000 members. Life and death are pretty real in this group, since everyone is stage 4, you might find some more answer there!!! You have to answer some skill testing question to join!!! There is also a bigger group called "melahomies on facebook" that has all stages. When, I was reading what Celeste wrote I started thinking about a movie with Tom Cruise " The Last Samurai' where towards the end of the movie the emperor asked, how did Katsimoto die and Tom Cruise answered him " I will tell you how he lived!!!!" Best Wishes!!!! Ed

I don't have much to add to the discussion except to let you know that I truly appreciate your question and the responses it has elicited.

Warmly,

Lisa

I also really appreciate this discussion. I had a not great experience here in my town with a medical cancer specialist and I’ll be seeking treatment elsewhere. But it woke me up to the fact that I need to know as much as possible about this unpredictable disease and treatments.  Part of that was going back through this group to the beginning and starting from there. I was struck by the sheer number of deaths back then (starting in 2010 or so) before approval of these newer drugs. Sometimes almost every other page of posts. And it seemed like a group of people from back then had met each other and continued correspondence outside the group. So those deaths must have hit especially hard. 

But also a lot of love in those posts about family and friends which was shared with the group. 

So now we have newer advances and the promise of more coming. But also pain, side effects, and life changes remain for many. 

Celeste, I am sorry that you have had a hard time lately, and Jeremy also. I really hope your new year brings you good, stable health and great joy.

Yes, Ed.  Yes.  
Yes, Cindy.  Some of us are lucky enough to have been here a long time.  There have been losses.  They still hurt.  But – to quote another movie line: "We don't leave our people behind!"

A warning:  some may find portions of these posts less than charitable.  But, let me tell you how they lived:

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=merde 

I wish each of you my best. I carry all my dear ones in my heart – always, and I am thankful. –  c

Hey Jeremy,

Wishing you the absolute best and thank you for having the courage to bring this topic up.  I, as a fan of many irreverent comedians, philosphers, thinkers, believe we all have these thoughts and many more thoughts, we are just trained as a society and culuter to keep them in the dark as if it's odd to have these thoughts.  I can't add much to the rest, but as always love Celeste and Ed's words, they remind me of Postcards from the Edge, people who have been there (for Celeste, both in her work AND in her life) and came back.  I'm the spouse of the person with Melanoma but I was very close to my parents who both died of illness (mom – lung cancer, dad – Progressive Supranuclear Palsy).  THEY EACH HAD TOTALLY DIFFERENT APPROACHES AND EXPERIENCES.  My dad was one of those who epitomized "Don't go gently in to that good night" and my mom epitomized grace and acceptance.  As a past medical librarian that researched how consumers prefer health information, they had completely different approaches.  My dad craved every morsel of research (I've got his genetic propensity for research)  whereas my mom preferred no information at all about her conidtion or really any information surrounding her condition.  For some, information is soothing, and for others it is anxiety producing.  My dad feared death more than pain and my mom said death didn't scare her at all, what scared her was the thought of being in unbearable pain.  My dad had a progressive condition that was hard but he preferred living with more pain and my mom essentially decided she had enough quickly and was ready.  

What was a bit funny is my dad was friends with one of the lawyers for Dr. Kevorkian (my mom always joked that she was going to get him one appointment :)).  I think DIGNITY is what we are all looking for no matter what is going on or what we ultimately die from.  

I think a common variable that we see is what Celeste also touched on which I saw with my dad who had progressive disease, it's hardest when you can't do everything you once could do, it's very hard on people when things that were once easy are no longer able to handle (whether temporarily or permanently).  

The people that I think might help you with your question is possibly Hospice workers (not because of your condition per se, we all hope for recovery for you but because of your question on death).   You might want to ask several hospice workers what their thoughts are, they are so connected to this experience.  Like Celeste said, as a culture, we've kind of covered it up made it even more scary and unknown since no one talks about this.  I find Hospice workers to be beautiful and comforting and they deal in this daily.  They all seem to have an ability to deal with the cycle of life in a way that is just part of life and death.  They seem to be able to promote living every day and take the medical part as part of the process you have to go through but they are really about living!

Thanks Jeremy, hoping the best for you always.  Many hugs, Jackie

I have appreciated this thread. Strangely I used to be more active here, but the loss of Artie was hard…and others since. I try not too look too often because I worry. Sept 12, 2014 I fell to my knees and breath left my chest when a doctor told me my 17 year old soccer boy had a cancer I had never heard of. He was still coming out of surgery and I was alone to go help him wake up. They offered me a juice box. I don’t know why I remember that. Apple juice. I don’t even like apple juice. I had to get control. I had to call his dad, we were divorced when he was 3. I always wondered why we had such an easy relationship still. They gave Jake roughly a year as they assessed his tumors etc. Spine, liver, lungs, bones, muscles, and just all over. 

I couldn’t imagine helping him go. I couldn’t imagine my life without him in it. But I did have 3am runs in the dark where I felt like you. I just wanted to know. 

Jake is 21 now. I have watched him endure things I have never had to do at 50. I have watched crushing disappointment as treatments failed.  He has fought to keep his identity and tells people he is all better, or that the scars are from a motorcycle accident. Haha! He lived in Hawaii for 6 glorious months! He skis often. I think he dates a little but I am not privledge to that info! Jake has brain mets and I don’t think there is a part of his body that hasn’t had a tumor including his heart…but Jake believes he will win! He hates living at home, but he makes the most of it all! He inspires me! We don’t complain about much around here, and we all live more and better!! 

This probably has nothing to do with your question! But I just think it’s a natural place to be. I also think you process all of that and it’s possible to come out of it happier:) 

Happy 2019!! May it be a year of miracles for many!!

Kerri