› Forums › General Melanoma Community › What’s it like at the end?
- This topic has 17 replies, 8 voices, and was last updated 4 years, 2 months ago by Momofjake.
I’m sorry if this is a bit morbid and might be hard for some to read or hear. So, if you are offended by my question or the answers that may follow, please forgive us now as we mean no disrespect.
- December 30, 2018 at 6:44 am
That being said, I would like to know what it’s like at the end of this war? How do you know when it’s that time and there is nothing left? Does Melanoma just end up taking us or is always going to be organ failure of some kind?
Again, I mean no offense if this is hard to talk about. I just have had this on my mind a lot lately and need to know what to expect. I need/want to know how to know it’s getting close.
- December 30, 2018 at 12:18 pm
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.
Thank you Celeste for your words of wisdom, they are always appreciated. I completely understand that I’m asking sort of a ridiculous question , sort of like asking if there is an afterlife lol. No body really knows for sure but I was hoping to here from those who have maybe lost of are caregivers etc. I wasn’t necessarily looking for a concrete answer as much as maybe looking for advice from caregivers who have cared for those near death or otherwise similar circumstances. I totally get it’s like asking to know the “chicken or the egg”. I just can’t help but think about it right now.
- December 30, 2018 at 12:49 pm
As for me, I’ve currently completed three rounds of ipi/nivo with the forth coming up in just over a week, however I have found some new growths/nodules on my body since starting, including a bump on my head that seems to be getting bigger and starting last night, was kind of starting to hurt though I admit, I have a hard time leaving it alone so it may have just been irritated from me touching it constantly. My doc wants to finish out the ipi/nivo before scanning which I kind of figured she would since we are so close to being done with the 4 cycles.
I guess death has just been on my mind a lot lately as I try to figure out if it is near or if I’m just being scared and paranoid. Probably a little of both, I just have not prepared myself mentally for this challenge yet. Anyway, I’ve rambled enough, thanks again for your input and advice, its always appreciated.
- December 30, 2018 at 1:51 pm
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
- December 30, 2018 at 8:48 pm
Thanks for your response, I’m actually a member of a stage 4 group already and there are probably 2,500 members or so, there is a lot of death in that board. It’s just a very sensitive subject and I’ve felt Im closer with all of you than the facebook group even if I don’t post often.
As for preparing, I’ve started the same. Extra pictures and recordings to document how things “were”. Even if I’m no where close to how I was. I spend most of my day in a bed because my bones hurt too much to be up and moving around. Like every 3rd day, I have enough strength and my pain is low enough to get up and go do stuff with the fam. I’m just not convinced the ipi/nivo is working. I think I’m getting worse, not better. I have this knot on my head that just keeps getting bigger and can get sore to the touch when I can’t seem to leave it alone. So I guess I’m just really scared right now and not ready for it to be over. I had an excellent Christmas with my girls and would love to do it for many more years to go. I just am not sure if it’s in the cards.
Anyway, thanks for your thoughts.
- December 31, 2018 at 1:07 am
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.
Thanks, it’s one of those things that just keeps ending up in my mind without any real answers.
- December 31, 2018 at 1:27 am
- December 31, 2018 at 2:56 am
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.
- December 31, 2018 at 4:13 am
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:
I wish each of you my best. I carry all my dear ones in my heart – always, and I am thankful. – c
Thanks for sharing Celeste. These were all amazing stories of amazing individuals who unfortunately lost their battles. I think I understand what you are trying to say and I thank you again. I’m not here to focus on what may or may not happen but do like to be informed so when it is happening, I’m at least aware and know it’s time to say my goodbyes.
- December 31, 2018 at 6:07 am
- December 31, 2018 at 6:02 pm
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
Just to clarify for others reading this thread. I’m more interested in a broader sense in how melanoma specifically takes us if/when it becomes time. Which I think Celeste answered my question as best as possible now that I’ve had time to digest it.
- January 1, 2019 at 12:02 am
It basically comes down to an organ failure of some kind in the end, but which organ is taken will dictate the overall experience. A liver is going to be a longer “experience” with possibly more pain to endure. But if it were to be the brain or heart to fail, we’d be looking at a much shorter “experience” but probably less pain.
Unless there are others that have had relatives pass or were a caregiver who still helps out on the boards, please share the experience with us if you are able. I understand that it may very well be too hard to share and that’s perfectly fine. You’ve endured enough and if your here, that just speaks volumes to the type of person you are. I thank you from the bottom of my heart for continuing to support our community and our warriors.
- January 1, 2019 at 4:18 am
I thnk you have voiced something most of us have thought about at one time or another. I can speak to this both as a care giver and a stage IV patient.
Although it wasn't melanoma I lost my wife of 30 years to End Stage Renal Disease. She fought as hard as she could for over six years of Dialisys. We even did home hemo dialysis until she needed more attention from nurses. A good month for us was only one trip to the ER.
I knew she was getting tired of the struggle. She had lost 3 sisters and was just worn out. It was one of those trips to the ER we had become familiar with. As the paramedics wheeled her out I told her I would get her bag ready and see her at the hospital.
When I got there they had me go to an office instead of the treatment bay as was usual. She had coded during the ambulance ride. They continued CPR with me beside her for another 30 mins. At one point her heartbeat came back and I whispered to her that I loved her and then it quit. After 45 mins with my concurrence CPR was halted and she was pronounced.
I think it was better like that, unexpextedly, than watching her slowly lose the fight.
As for myself, I learned that I was not immortal many years ago in Viet Nam. I decided I would live my life as I wanted until I couldn't.
When I was first diagnosed in 2015 it caught me totally unprepared. I had seen my primary doc for a stomach problem and on the scope they caught a shadow in my liver.
Stage IV. Liver, lungs, bones, Lymph and Adrenal glands. But no brain mets.
I felt like my body had betrayed me. After all those years in the military where I could count on it to let me drive on, it was now killing me.
I did a lot of thinking and soul searching. I didn't know at first whetehr I wanted to take treatment or not. I decided that I would take treatment. I got in on the Yervoy/Opdivo stage 3 trial. Went on Opdivo solo until Dec 2017 when I had to stop because of the side effects. I was NED at the time.
I played wheel o side effects with prednisone until oct this year.
Next scan is 23 Jan. I live scan to scan but I am already planning a long solo m/c ride starting after my scan afetr the one in jan which should be around the end of May.
I guess for me, I'll do what I decide so many years ago. I'll live my life as I want until I can't.
Sorry for dragging on, but you evoked a lot of things in me that I felt might be relevant.
Best of luck to you.
Mike, these are the exact kind of stories that I was hoping to get to hear/read. So please, don’t apologize for going into detail, that is what is appreciated the most. If it was short then it may not have felt so genuine and real.
- January 1, 2019 at 10:21 pm
So with that, Thank you.
- January 13, 2019 at 1:29 pm
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!!
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