Nightmares

[HAP]

Dear friends,

At last I know why no matter how tired I feel I have difficulty dragging myself to bed at night. It is not just that I am sleeping alone.

I woke up five times last night and remembered what woke me up all five times: the same dream. In it, Jane is still alive, but in her final months/weeks. We have not gone into the hospital yet but we know what she has and are searching for a cure--or rather I am. She is too weak to get out of bed without help. I'm looking for black raspberry powder--which does help, sometimes, with the diarrhea carcinoid/NETs causes--acacia leaves for a tea of some kind--which has no bearing in reality that I know of, and a couple of other things that are increasingly desperate--ground apricot pit equivalents as far as I know. Ultimately, I fail. Ultimately, I watch her die again and again and again.

I suspect this has been going on for months/years. The good news is last night I finally had worked through enough of the trauma to finally remember the dream. Maybe now I can get a grip on those issues and deal with them.

And maybe that is part of why I have been so miserable over the last week or so. I started crying in the car on the way back from Chelmsford and the Cystic Fibrosis walk. I've been tearing up with some frequency for several days now. Part of it is the frustration I'm going through with both Relay and the Marathon Walk, I suspect. Part of it is the awful and ongoing sense of isolation--even in groups of people I like. Part of it is working with patients in the support groups and realizing for all the progress we've made, very little of it is reaching the patients--that from the description of some of their symptoms that some of them do not have very long--that they and their doctors are simply managing the end of their lives as gracefully as can be done with this disease.

For all the effort we have all put in, the death rate is not declining. We've just gotten marginally better at detecting the disease. Oh, we have some things in the pipeline, but before we can get them into the mainstream, a hideous number of people are going to die the same death Jane did. CAPTEM, a two drug combination that looks really promising in the early trials appears to be a standard treatment in England. But because it uses two generic drugs, getting the FDA trials done here that would lead to its eventual approval are going at a glacial pace: not enough profit in it. And of course its use in England means nothing here.

But the major component of my angst is missing Jane--and, looking at those dreams, how much it hurts that I could not do more for her at the time. Not that there was anything I really could have done much differently--there was even less of a cure available here at the time--and even globally we had virtually no understanding of the disease and how it worked. But my subconscious clearly has not yet let that one go either.

Thanks for letting me verbalize this stuff. I don't feel much better but I may find sleeping marginally easier to attempt tonight.

Peace,

Harry

[mfh]

Dear Harry,

I am glad you are now remembering that dream. It is certainly telling and reoccurring dreams are one way we work through things. I had one back in the 70s that went on for a long time and suspect longer than I knew but I finally worked through the message it was giving me. And it disappeared once I did that. I still have one that tells me I am feeling vulnerable when perhaps I am unaware of it in waking hours. You are the third person today (plus myself-making 4) who has told me of dreams that are disturbing or powerful or significant or all of the above. It takes a long while to shed them especially if they occur again the next night. Yours is so very real and significant and so detailed. I do hope remembering is becomes helpful over time and especially that you sleep peacefully tonight.

I do so understand your missing Jane and wishing you could have done more for her. I have the same feelings every day...and I walk with you (and others here) on this journey. I do not know if this applies to you or anyone else here but I have learned these 4+ years that come spring I feel more vulnerable than I do come autumn or winter or even summer. In May we shed our heavy protective clothing; rejoin humanity at various events if not more than seeing more people around and out and about; come out of winter hibernation; and it all leaves me feeling more emotionally naked and vulnerable. I have monitored this each spring and find it to be true. The merry month of May that Bill and I just loved as it meant getting the bikes out, the hiking sticks, cameras, etc. and being out there breathing in new life...even on a road trip. Well, the merry month of May is not as merry without our beloveds. Maybe it never will be. I do not know that. We can cherish and enjoy the memories, the new flowers and birds, the warmth of the air. But that hole in my life and heart (for me and perhaps for others) is difficult to integrate into the joy of spring more than other times of the year. Just a thought.

Sleep well tonight,

Mary

[HAP]

Thanks, Mary. Worth some thought.

Harry

[kayc]

I had recurring nightmares when I was a child, I think all it showed was how I was feeling, what was going on at my life at that time. I haven't had it since my 20s. I think as soon as you feel you've worked it out, it will undoubtedly end. But this is not just your fight, Harry, it is too big for one person, it is a fight that is going to have to incorporate a lot of people. And it doesn't all rest on your shoulders.

[Wifflesnook]

Dear. Harry

My Pete used to keep a dream diary and write in it the moment he woke. It was amazing. It sounds as though your subconscious is working through the deeper things you can't process consciously and remembering must be the first step. Everyone who reads your postings knows how much you do for others (and of course for your beloved Jane) but you aren't superhuman and you are fighting an enemy which you can't fell by yourself. Doing something is so much better than doing nothing but I hope like all,your friends that it isnt taking too much away from yourself, which as you well know Jane wouldn't want.

[feralfae]

Dear Harry,

I think sometimes that dreams come to us so that we can sort out our emotional responses that are buried too deeply under pain and sometimes fear for us to face those responses when we are awake. I have not had any nightmares about Doug that I remember, but my waking hours are still interrupted with thoughts of what more I might have done to help him, to help him stay here, to ease the pain, or to ease his transition.

I think we each did all we could. In my thoughts, I hold Doug in my arms, and sing to him, and reassure him that all will be well, even as he struggles with his final hour of breathing, of being here, yet already obviously seeing what I cannot see on the other side of the veil. I wonder how I might have helped him more. I wonder if there was some treatment I did not find in my research, some food that I overlooked that might have had the right ingredients, some drug that was in clinical trials that we should have pursued, some machine that might have slowed the cancer, some miracle that might have saved him if I had prayed harder. The "what ifs" take me over sometimes, and I think that somehow, we might have found a way to pull Doug back, if only I had worked harder, researched better, done more, been a better advocate. Maybe something would have worked.

Dear Harry, you have taken on the world to cure now that Jane has moved to another energy state. I read your frustration, and I know how dedicated you are. We fight battles against huge walls of institutional inertia, political corruption, greed, and ignorance. But although this fight is an extension of your fight for Jane, remember that your precious life and energy were given to you so that you could enjoy your time here on Earth, bring joy to your own spirit as well as the spirits of others, and to live happily enough to enjoy the days of Spring. You deserve to be happy again. The Earth is still filled with the joy of life, even if we do not see it or feel it a lot of the time while our grief carries us into shadows.

You are pushing yourself against an entrenched inertia of bureaucratic indifference in some ways. You are standing your ground because it is a good thing to do, but please let yourself have the time that you need to heal and rest, to cherish your own life and your own days, and to enjoy and appreciate the beauty around you. Not with crowds of people, but with close and loving friends who are close enough to know your emotional state and care for you through all the shifts and changes we have on this journey. Someone to give you hugs because there is love between you. Good friends. It is so hard to accept any of this loss, and it is harder when we do not have loving people to care for us. I could not make it without the hugs of dear friends.

I am only just beginning to accept that I did all I could for Doug. Maybe too much, because I am now paying for the years of being his caregiver and defender, advocate and wife, listener and confidant in the years after he became ill. I think sometimes for those of us around this fire, we each took on so much that we have depleted our own selves to the point that even our defenses against unearned guilt and unnecessary responsibility are weakened along with our immune systems. We are used to pushing on, to going one more step, to managing to make it one more day, through our fatigue, failing health, and growing despair.

What you are doing is beneficial, beautiful, and a wonderful outlet for all the energy you have to help restore balance to the Earth. But I hope you are taking the time to find nurturing people who love you and can hug you, give you comfort, and who can resonate with lovingkindness. I hope that you have some people who reach out to you with love and compassion, and who know to hold you in compassionate concern even as you may play and laugh together. I think part of balancing ourselves is having friends and family around us who can heal us with their accepting, caring love as they help us to heal. I know I could not make it without my dear friends who give me hugs, truly care about me, and whose lives I share.

I have also learned, and continue to learn, that my energy is not infinite, as much as I might like to think it is. I guard myself against negative phone calls, stressed people who need to dump their pain on me, and I guard against people who want me to solve their problems. I have so little to give right now.

You continue to give so much. I hope you are remembering to give to and nurture yourself, and that you are seeking out others who can also nurture and care for you. I think you are perhaps feeling the depletion of your emotional and physical reserves. I know that this is the season of fundraising walks and other efforts, but I hope you are finding time to sit with yourself, meditate, relax, and find your own peace each day. Are you doing that?

This is an early morning all over the place sort of nattering, but what I hope to say is that I hope you are giving yourself the kindness, care, and compassionate nurturing you have given to others for so much of your life. I hope you are letting others love and care for you, even as you continue the effort you began when Jane was first diagnosed

And I hope you can stand down sometimes and just let yourself BE.

namaste,

fae

[feralfae]

And I also wanted to ask if you can take a while off, maybe a year or six months off, just to heal and rest?

fae

[enna]

First of all ~ I am blown away by the most beautiful responses above to your post, Harry. We are a connected bunch here around this fire. How blessed I am to be here.

I am so sorry that you are having nightmares and that your sleep is so interrupted. Sometimes our minds are so filled with the "woulda, coulda, shouldas" that we forget to calm ourselves before we lay our heads on our pillows.

I very rarely dream but when I do I usually wake up and remember only parts, if any, of the dream. I like to think of a computer metaphor when trying to figure out what a dream might mean. Just like we ‘clean up’ our computers once in a while so we need to clean up the stuff in our heads. We refresh our minds for the next day.

We are in a safe environment when we go to bed and dream comes. We have a chance to sift through things without the fear of being judged or evaluated.

This topic brings me back to the early psych classes I had when studying Freud and Jung and others in undergrad classes.

I find that tears are good, Harry. They release any stress I might be feeling over whatever. I am glad that you can cry ~ not that I want you to, but that you are able to.

You have much on your mind with the work you are so dedicated to in your drive to find a way to get NET cancer noticed. What you know today is not what you knew when you and Jane were going through her illness. Our minds play tricks on us. We are always one step away from what is really reality. I still feel that I will eradicate Alzheimer’s disease in my lifetime. Silly me. But like you, I’ll work on it until I die just as you are driven to find any way to bring carcinoid/NETS to people's attention.

There comes a time when we say I have done enough…I won’t feel guilty if I don’t find all the answers…I am enough and my love knows that I am. I believe that time will only come when we are no longer here on this earth.

I have a routine that I use most nights before I even go into my bed and that is to turn all electronics off and sit quietly and practice some imaging reflections ~ I don't even like to call it meditation but that is what it probably is. Sometimes I'll have soft music on and I light a candle ~ I picture nature things mostly. I find that I can even see myself in a field of wildflowers taking in the beauty and other times I'm surrounded by a room full of puppies (now don't think I'm losing it) petting them and watching their little tails wag. I do this to clear my mind of all the things that happened during the day.

Sometimes we go to bed with so much on our minds that we don't give ourselves a chance for that good sleep we so need when we are grieving.

[kayc]

Good analogy, Anne!

fae, you are a wise woman to guard yourself and strike balance.

[mfh]

Anne, your bedtime routine is a wise wise choice.

[MartyT]

Most especially the room full of puppies part . . . ♥

[feralfae]

Yes, love the puppies.

[kayc]

Anne, I missed that paragraph, probably distracted by my animals and then my eyes went back to the screen past it. I'm glad it was called to my attention. Imagery is incorporated into meditation, and very calming. What a great idea, to do it at bedtime, I think I shall try it! I like the blotting things out that occurred during the day and then going to sleep surrounded by puppies.

[HAP]

Dear friends,

Thank you all for your kind words and thoughts. I will think on all that you have said.

I am gradually returning to my full meditation practice from before Jane's death. Jane and I both spent 24/7 in some form of meditation. It was what allowed us to be the teachers we were. I don't know if Jane lost that during her last days. I know that mine shattered not long after her death and that I have worked daily to get myself back to that level of focus for many months. I am not there yet. On a good day, I am entirely in the moment for 10-12 hours. On a bad day I may only manage the formal meditations of my youth. It is frustrating to know where one has been and not be able to get back there as easily as I once did. Then I remind myself how many years of practice it took to reach that place to begin with--my Grandfather set me on that path when I was five--and feel better about the forward and back nature of meditative progress. Physically, I have largely healed the things Jane's illness did to me. But the mental trauma of her death is still there and that retards the emotional healing. Jane once told me I was the most patient person she had ever met--and that patience is what I need now.

Time to spend a few hours contemplating all of the above.

The good news is that I had fairly pleasant dreams last night--and no repeat of the night before.

Peace,

Harry

[kayc]

That explains a lot about you (my Grandfather set me on that path when I was five). What an amazing person, I know you don't think of yourself that way, but you are. I find it interesting that this place draws so many amazing people, the creme de la creme, so to speak. And that our common thread is loss/grief. I do know that there are lessons in suffering, that it seems to enrich us in some way, so perhaps that plays into it somehow. there is deeper empathy, sensitivity, etc. Anyway, that's my theory!

[mfh]

Harry, my practice of meditation also fell apart..during caregiving days...after 40 years of practice. I am still working to get back to where I was with it but it is coming along. I think you and I are both about 4+ years out from our beloveds' deaths...and yes, still in pain that will hopefully diminish at least some over the coming years.

I think being "entirely in the moment 10-12 hours a day" is fantastic. That is pretty much where I am also but I would like to be sitting (in formal meditation) more often than I am now that I have the time. My goal is three times a day and I am at 1 or 2. I think you have to claim pride in what you have accomplished...imho. with meditation and with the entire fund raising, awareness heightening you do around NET cancer.

Peace to your heart,

Mary

[Queeniemary]

Harry, wise words from many on your nightmare situation. I can understand your frustration with it, and am glad you had pleasant dreams the next night. I occasionally wake with heart pounding, and feeling fear, but do not remember the dream. Usually if I remember a dream it is pleasant, and most of the time I don't remember much, just bits and pieces. The couple of times that I felt Mike really visited me in a dream, I remember clearly.

Anne, really love the idea of a room full of puppies before going to sleep, may have to try that one. Usually I go to sleep reading, and will wake later to turn off light and move book (or kindle) off my chest. Probably would rest better if I would just sit quietly and try to do the imaging.

QMary

[MartyT]

The Anne Solution

[mfh]

Works for me!!! Has drugs beat by a long shot.

[Queeniemary]

Marty, perfect picture!! Thanks for sharing. Anne, if I were in a room full of corgi pups, could not watch tails wag, just their little nubs.....but they are so cute when they get to wagging them!

Two pictures below, a room full of corgi pups, and a picture of my corgis little butts.....

QMary

[kayc]

Marty, your picture is perfect for Anne's meditation! Love it! Yours too, QMary!

[feralfae]

I am just smiling at all these adorable fur babies.

Soooooo cute.

fae

[HAP]

Dear friends,

I'm going to post my sad news here because it explains why taking Fae's advice about taking six months to a year to focus on healing myself is not really something I can do.

I got a note this morning from one of the people I know in the carcinoid/NETS community that Lindsey Miller, a young woman who writes a blog called "I am a liver" about her battles with the disease, died on Wednesday. I was among the first to read her blog, which started at about the same time I started mine. Her writing became increasingly difficult to handle because she reminded me so much of Jane, despite the fact there is a 35+ year difference in their ages.

Lindsey, like me, was trained as a journalist. She had recently finished her master's degree--despite her illness--and had fallen in love. She and her boyfriend had a "commitment" ceremony a day and a half before she died. There is a picture of her in her wheelchair in her wedding gown on her blog today from that ceremony. Her face is so thin and her legs are huge--the same way Jane looked at the end. It took me right back to when Jane was in the hospital.

I was at a conference on carcinoid/NETS at MIT in Cambridge on Thursday. We are now diagnosing 41 cases a day--about 15,000 a year--up from the 33 a day when Jane was diagnosed. We are getting better at finding it--just not better at curing it. We're raising more money than ever, but it is still a pittance compared to what we need. Jane's death and my efforts since have had a significant impact, people tell me, in changing the environment in the carcinoid research and fundraising communities.

But the fight is far from over. This morning, I received another post online from someone else I know. His mother died yesterday after a four year stint in the hell that is carcinoid cancer. People are going to keep dying at a 33-34 person a day clip--a pace I expect will accelerate in the same way the number of diagnoses is accelerating. More cases means more deaths when cures are really not available yet.

I made Jane a promise that we would kill this thing. I made myself that same promise. But I also know this is a long steep trail up a very tall mountain. I know I'll have to take the occasional breather on the way; but if I am going to reach the top before darkness falls, those breaks have to be short ones. People's lives depend on it.

I feel like the little boy on the beach with all the starfish dying on it. I keep picking them up and throwing them in the water. I know I can't save them all--or even most of them--but I'll keep trying. Lindsey didn't deserve what happened to her. Jane did not deserve what happened to her. I could not save either of them--or any of the 33 others that died today or the 34 that will die tomorrow. But maybe a year from now what I do today will make a positive difference in someone's life. Or maybe it will be ten years from now. It doesn't matter.

We all live in a world where too often people say one person can't make a difference--and that becomes the excuse for not acting. A few months ago, Marty made a decision to keep this sacred place going. That single action by one individual has had a real impact on all our lives. Almost four years ago, Jane and I made a series of decisions about fighting her cancer--decisions I have followed through on even after her death, despite her mind screaming at me not to.

I can't walk away from this fight because doing so would mean more people would die the death Jane died. Yes, Death comes for all of us--and I have seen it in many different forms. None of those forms is pretty to watch. But the death this disease brings is particularly heinous. I'd prefer we find a way for people not to die in this particular way. This is an arrow I do not want Death to have in its quiver anymore.

But taking something from Death is not an easy task under the best of circumstances. And these circumstances are not the best of circumstances. Still, it is a task that needs doing.

I'm sure people told Sidney Farber when he started trying to find a cure for childhood leukemia that he was nuts--that what he was doing would not work and that even if it did it would cost him large chunks of his soul. In reality, it did cost him a great deal. But he did not walk away regardless of what it cost him.

Nor did Marty walk away from us. Nor will I walk away from the people who are fighting this disease--regardless of what it may cost me personally. Jane and I had a simple philosophy that took us into teaching and guided our lives: "The good of the many outweighs the good of the one." The good of the many is the price of my life--and the price of my soul.

Peace,

Harry

[enna]

Harry,

I am so sorry to hear about your friend, Lindsey. I understand your passion to continue your work with carcinoid/NETS and I believe that one person can make a difference.

You are right about Marty’s decision to keep this discussion group going. I am proof of the positive impact she has had on my own healing. I have found tools here that I would never have found on my own. I believe that each one of us has it inside our very beings to survive this journey if we work on it. Those here have helped me through the darkest of times. The continued encouragement has given me the nudge I’ve needed to take those baby steps we need to move forward.

I am glad that you have a passion. I have a passion to educate others about Alzheimer’s disease ~ knowing that there is no cure but that will not stop me from doing what I can do. One person can make a difference. We have to believe that.

You are an inspiration for many of us.

As an educator I always believed that if I helped just one student to succeed in his/her life then my job was worth it. Our work on whatever passion we have now is no different.

I am thankful for this sacred place for it is filled with some pretty great people.

Anne

[feralfae]

Harry,

Thank you for that impassioned post. I am realizing more and more that you simply cannot take your focus off your mission for long. You are truly on a crusade, and I commend you. Having been on a few, I understand. You are compelled.

When I think of the "reality" of medicine a hundred years ago, and what we have today, I believe your mission is possible. Carry on, carry on. There are never enough heroes standing against the scourges. We used to die in large numbers due to plague, smallpox, polio, other terrible diseases that have been largely overcome.

I think this NETs can be overcome as well. I admire your crusade.

*<twinkles>*

fae