Holding Your Nerve - 1253218

Yeah. Certain Spring was trying to help me on that other thread. I've cut and pasted my reply:

"I’m scared out of my ever lovin’ mind. Especially since my onc shortened my prognosis from 18 to 24 months to 6 to 12 months. (I have to add that he meant if we did nothing… no treatment whatsoever). I feel like I have to hurry up and do something, but I don’t know what! And every new symptom, side effect or finding sends me into the stratosphere. (rhymes with fear)"

Sorry for the redundancy to anyone who has read both threads, but I thought that Janine had started something good here, so I wanted my reply to be here too.

Debra

Thanks so much Janine and Debra. I generally feel I can't post in this vein in case it upsets someone, be they a patient or a partner or a caregiver. So, with that health warning...
Occasionally I feel I am becoming completely unhinged. We just bought a house - a perfectly normal thing to do, and I love the house, but it is wildly impractical for anyone inclined to breathlessness as there are lots of stairs. So it brings up all kinds of fears: is this where I'm going to die? I can manage now but what about when I get worse? will I have to go to a hospice (here in Britain they are actual institutions/buildings) sooner because of the house we've chosen? will I fall down the stairs and break my neck? (I have brain mets in the cerebellum.) As if to underline the point, someone we know just died of lung cancer that had progressed to her bones and put her in a wheelchair. I spent about a week thinking "What have I done?"
However, it is my great good fortune to be married to an amazingly nice man with whom I can talk freely. So we sat down and I said how afraid I was of having to leave him to go into a hospice because of the house. Since he is also a very practical person, we went through how we could put in plumbing for a bathroom to make it possible for me to live on one floor. It was unbelievably consoling to have articulated these fears and to have talked to him about them. I now feel much more comfortable and able to take pleasure in the house.
What these discussions cost him I do not know. That is the other side of the equation, and I sometimes think I should be looking after him better - protecting him in some way. But I can't protect him, any more than I can protect myself. I try and make sure that he/we are seeing his friends, that he is in touch with his family, that he goes mountain climbing and eats enough vegetables. Beyond that, I don't know what I can do except to try a bit harder not be moody/stroppy, which happens rather too often.

Most of the time I am just plain scared. Not of the now, but of the future. Will I get brain mets and become non functional? Will it move to bones and cause pain we can't manage? What does the Beast have planned for me?

But at the same time I am hopeful and enjoying life. I have had 4 good years, managing (sometimes just) the side effects of the various treatments. Some have been dreadful but they are worse looking back than they were at the time - on a day to day basis we all just do it.

Holding my nerve - that sounds about right!

Certain Spring - I reckon it's great you have had the conversation and you know you have a solution. I must admit I have never thought about what such conversations cost our partners. But like you I do the things I can do for him. He too is scared of the future and of being alone in his early 60s. I just tell him I'm sure there is some floozy just waiting for him, and my superannuation! Maybe I need to be spending more money!

Gail

One of the wise lung nurses said to me (in relation to the worry about being in a wheelchair), "That may never happen." And she's right - there are so many worries that they aren't all going to be proved true. So Gail, you may never get brain mets or be in terrible pain. That doesn't have to happen. A great release for me was realising that I was quite likely to die fairly suddenly - from pneumonia or a pulmonary embolism, say, rather than as part of an agonising decline. The friend I mentioned seems to have died very peacefully, at home with her husband and son. It sounds as if her lungs just packed up.
I also cheered up once I had experienced morphine at first hand!

I worry that tumor will invade the pulmonary artery and I will bleed out. I know it would be fast, which is good, but I wonder if I would be spitting up blood everywhere, which would be an awful image for my family to have in their heads. And quite a mess to have to clean up. I really don't know what happens, but I do know that my tumor is attached to the artery and growing.

And the idea of air hunger scares me. So many scenarios play out in my head, some good, most frightening, all possible. I guess we all wonder how we will die. It is literally staring us in the face, so it's hard not to think about it.

My mom got very disoriented, which was calmed with morphine. She was not alert, but seemed to be aware, and very sad. I think she cried all night long her last night, but she was very dehydrated so there were no tears. Just moaning. I know she didn't want to die. Her actual passing was uneventful. I told her it was okay to give in to it, that there was nothing the doctors could do to bring her back, and she seemed to calm down, and passed soon after. Just slowed breathing, until finally it stopped. She didn't appear to be in any distress in the end.

My best friend, who had ovarian cancer, had the surge. The night before she passed she got up and had a bath, cooked dinner, to which she had invited certain selected people, and seemed her old self. The next day she declined throughout the day, breathing slowed until it stopped. The only thing that still disturbs me is that she was drooling constantly and it seemed she was drowning in her own fluids, but hospice was there keeping her very medicated and she was in no apparent distress. It was sad to see her son keep wiping it away. Tender, and very sad. I miss her.

It's hard to be upbeat for family and friends all the time, but they really can't deal with the reality, so I try to act like cancer is not happening. The only one I can really talk to is my X-DIL Lisa, who starts crying at times, but is always there.

Your ex daughter-in-law sounds wonderful. Kudos to her.
Sometimes the reality is less awful than the imagining. It might be worth asking your doctors what happens if the tumour invades the pulmonary artery. Maybe it causes a heart attack - I don't know but I would ask if it was worrying me.
I'm hoping I will know very little about it. My main worry at the moment is that my husband/brothers won't be there, because my husband is often away and the brother who lives nearest has a tendency to switch his phone off in times of crisis.

Though some people have a more sudden collapse and others decline more gradually, the clear majority don't suffer from agonizing air hunger or pain or cough or other "suffering" symptoms. The gradual process is far more often a gradual weight loss, fatigue, sleepiness, and fade out.

Of course, none of us can predict what will happen for any one person, but I think there's good reason to NOT presume that things will be awful, especially if hospice folks are involved, since they can often be available to help guide people about what's expected and provide various meds and equipment to help minimize the symptoms.

And those who follow this site know I'm no Polyanna, so I think this is a realistic expectation that most people don't need to suffer greatly, especially if they accept help.

-Dr. West

Thank you Dr. West for those very comforting, and fear reducing words. I will read this comment often.
Debra

I want to believe or I guess I should say I Do believe What Dr. West is saying! It's a bit hard for me because my husband doesn't want to discuss the future in that sense! I feel I'm going to be around for quit a while. That doesn't mean I don't have those moment's where I worry what is going to happen. I have been trying to write Letters to each of my closest Loved ones, it's not easy! Those are the Days I get negative. Most the time I try to stay positive. So here's to God giving all of us a break! Love you All! Lorrie!

More thanks to Dr West for reassuring words. I guess when we have lung cancer we focus on related ways of dying, but in reality there are a heap of options, and hopefully, in most cases, they are acceptable.

I shareDouble Troubles fear of air hunger - that is extremely scary. But will just have to keep fingers crossed.

I am also mindful about how many out there are suffering in far greater ways that I am. Those in war torn countries, those witout access to food, water, medical help. Those on the receiving end of violence and poverty. Sometimes reminds me that I am facing a first world worry, with wonderful access to medical help, am financially secure, in a loving relationship, and living a damn fine life!

So for the moment I will set the worry of dying aside, and concentrate on the living

Gail

Well said Gail. Thank you, and I agree. A dose of the nightly world news usually snaps me out of it too.
Debra

I too worry about Air Hunger. My mother had Lou Gerhrigs. I wasn't there when she passed but from what I was told she was definitely suffering from Air Hunger. And it is embedded in my Brain! Which makes me very Sad!

Just wondering if people know that Dr Harman did a post on this:
http://cancergrace.org/cancer-treatments/2012/02/17/dyspnea/
Because of where my tumour is, I've had some bad moments with what I would call respiratory distress (hadn't come across the term "air hunger" before). But morphine is a wonderful thing.
I think that sometimes the laboured breathing that people will have observed in a loved one shortly before death is what Dr West describes in this post - it is part of the dying process ("agonal breathing") and doesn't mean that someone is in great distress. I certainly remember this with my mother.
http://cancergrace.org/cancer-treatments/2011/05/06/faq-dying-process/
This is a great post by the way, though obviously you have to be in the right frame of mind to read it.

Aunttootsie, my mother had ALS as well and I was there when she passed. She did suffer a little at the end, but we were niave then and didn't know to call in hospice. I lost my dad to lung cancer and he did not suffer at all. It was very peaceful and much like Dr. West described.

For myself, I'm not so much afraid of how I'm going to die, but I torture myself about what I'm leaving behind. I can't watch TV shows that show moms and daughters buying wedding gowns. I can't bear the thought of the pain my daughter will be going thru without me being there. I know that might sound silly, but I have lost a lot of sleep over her future wedding.

It doesn't sound silly. I missed my mother dreadfully in the run-up to my wedding, when she'd been dead for eight years. Weddings are such symbolic occasions. How old is your daughter now?
My mother and I had a strange conversation shortly before she died about what I would do if I had a million pounds. It wasn't really about money, it was about dreams and wishes - I think she was trying to find out what I wanted from life, what was important to me.
It is about not knowing how the story ends - being cut off just when it's getting interesting. I don't have children but I look at my nieces and nephew and wonder what's going to happen to them. So I have an inkling of how you might feel.

My daughter is 16. She and I are very close and have had some of our best times and best talks while shopping. She always says I'm the only one she can shop with. We are in the process of getting her prom gown for this year and are having a blast. Obviously no one wants to leave their children or spouse behind, but that is what bothers me most. I'm selfish - I want to be at their weddings, I want to spoil my grandchildren, and I want to grow old with my husband. I know the future is not my choice, but this is what's hardest for me to deal with.

She'll miss you when she buys her wedding dress one day, and you'll be there in her heart. In the meantime you are building up a store of good memories for her future - the best kind of investment.

Thank you. I hope her store of good memories is overflowing.

I'm sure it will be.
Here is an example of what I mean by "holding your nerve" - and also an example of how I fail to take my own advice ....
On Monday I had an MRI, which I hate (well, obviously nobody likes them). My cousin came to meet me and buy me a sandwich, which made it nicer. Usually I have some kind of imaging (MRI or CT) done a few weeks before I see the oncologist, and in this case my appointment was for the end of February. On Tuesday the clinic rang up to say could I come in on Thursday (today), ie three weeks early. To say that alarm bells went off would be an understatement. First, no one from the lung clinic never rings up: communication is by letter, and slow. Second, I'd had a stiff neck and been a bit wobbly for the last few days - bit forgetful, the odd headache - and it's amazing how ill you can suddenly feel when you think there might be something wrong.
I rang my husband, who pointed out that it could be an administrative convenience, and I tried to get on with my work. But the fear was terrible, as anyone who's had brain mets will know. It took me right back to the beginning, and it took a real effort of will (and several glasses of wine) to calm down.
Sure enough, it turned out that next week's clinic had been cancelled and the appointments rearranged accordingly. There is apparently nothing wrong with my MRI. But it takes a lot out of you.

That's wonderful news! I do understand how sick you can become when you're sure there's something wrong. Miraculous how much better you feel when you get good news!

Omy! That was unwanted Stress! But I'm glad you were able to calm yourself with a Fine Wine! I wish I could toast you! So Happy For your good News!

Nothing wrong with your MRI!!!!!!! Yay!

Debra

How terribly frightening! I remember when going through all the initial testing I told myself it will all be ok as long as the doctor doesn't ring me (therefore can't be anything significant). And then she rang!

I guess we tend to make our cancer the centre of everything. We forget about the normal administrative nuisances in life.

But what a fantastic outcome. A clear MRI, and you didn't have to wait as long to get the result.

Holding the nerve........

Gail

Very good to hear. That's part of why I try to arrange only a short interval between someone's scans and our discussion of the result. I would really hate to call someone and ask them to come in earlier, forcing us to have a conversation over the phone that would be better conducted in person, or leaving them to ruminate about the potentially terrible findings that require an earlier visit.

I'm glad it was just a little practical hiccup.

-Dr. West

Wow, where was I when this discussion began? Oh right, discussing my last PET scan with my oncologist, who said, "I think it's time to discuss end-of-life issues", and handed me the bright pink POLST form. I'm sorry to ambush this forum with an update, but it's so apropos. I feel like we're seriously all in the twisted version of Noah's ark, floating on the big flood...

CS: You know my agony towards stairs and the two-story house we bought in April of last year. Thousands of words of anger and bitterness I wrote towards the house and its location, although it was the love of my husband's life! Yes, we discussed adding a shower to the downstairs powder room, and converting the den (which is now the formal dining room) into possibly a room - the one hospice might put the hospital bed in when it's time. He assured me we could get a Stairlift - the chair-escalator that goes up the stairs. I reminded him of all the admonishments to buy a single-story home from oncologists and nurses alike. I feel your pain. But your husband sounds infinitely more sympathetic towards your cause. With the latest news, my husband's actually humoring me and allowing some of the things I love into the house... The laundry is another matter---

More importantly, Hurrah for a clear MRI!! I absolutely concur with the morphine. Thank you Universe for it! My pain is controlled at last!

Janine, thanks for starting this thread. I'm now deep in progression, having lit up like Las Vegas on my last PET. I'm off the Denver trial and need to start chemo next week if possible, and Xgeva if my insurance would approve it. I'll elaborate on the afatinib thread, but I've got new mets, and the Clovis trial I'd hoped would be ready has not reached MTD. The PD-1 trial slots are going fast at UCLA but I can't wait to get a biopsy, have it tested, etc. I see a new oncologist (in So.Cal) tomorrow to get the ball rolling. Desperately trying to hold my nerve...

Jazz, as some of us have posted on your blog on hearing your news, we are devastated. Unfortunately that doesn't change the facts or help any, but now is certainly the time for holding your nerve! I'm not sure what a POLST form is, and whilst the color of it may be cheerful I suspect the content isn't. And I'm not sure how you or any one can hold your nerve against this latest news. As mentioned you and I are sharing similar therapies, but I don't glow in the dark (yet!) and am holding out for the Clovis trial, due in Australia shortly. I will find out at the end of the month if the alimta is holding things at bay in the meantime.

I must admit I don't quite understand your story of houses and the things you love. Did hubby insist in the two storey house against your wishes? And why wouldn't you be able to have the things you love around you?

I suspect we all live in a illusion to some extent. We know we have terminal cancer, we know we are going to do, but I suspect we know it intellectually rather than emotionally. To be told, however kindly, that there is no more hope must be more that you can bear.

Gail

I forgot to mention that I rode an electric scooter around a big box home improvement store today. I resisted but my husband made me do it, and he was right. I had trouble navigating the airports last Wednesday, and those stores are the equivalent amount of walking. Air hunger.

Also, I found this presentation on TED.com - http://www.ted.com/talks/peter_saul_let_s_talk_about_dying.html

Dear Jazz, I am so glad to hear from you. This thread should be a home for you. It is time you had somewhere where no one is going to tell you off for talking about your fears. We're all here to hang onto. You must feel sick with fear, but you are not going to disappear in a puff of smoke. Your body is incredibly resilient and has kept you going all this time - it will keep you going a while longer. Thank goodness for the morphine - it will make life easier and it is so reassuring to know that it is there when you need it.
Just make sure you do some nice things in amongst all the medical stuff. And don't worry about the house. As we were discussing earlier in the thread, things may not turn out in the way you fear. Much love.

Gail,
Dr. Camidge (Denver onc) was quite a bit more reassuring than my local doc, for which I could just hug and kiss him! If my PET was alarming, he presented a very calm and gentle assessment that yes, my bone mets had grown and there were new ones. But the things to be concerned about were "the soft, squishy parts", and although I now had a met on my adrenal gland ("small but active", as his Fellow put it), things were otherwise okay. He said, "No one's ever died of a broken bone", which may or may not be true, but I think his MO is to preserve Hope, and he's pretty good at it. Since the Clovis trial isn't ready, and may not be for a few months yet, he recommended chemo plus Tarceva (actually a rerun of Gemcitabine-Carboplatin + Tarceva) to herd the sheep back into the barn until I could get on another trial. He also emailed the trial doc at UCLA as an introduction. The upside of the adrenal gland met is that it can be biopsied for clinical trials! How about that for a silver lining...

We discussed the lack of data re: repetition of a doublet this far down. He wasn't opposed and suggested it as the aggressive option, which could be de-escalated if issues arose. He said I could postpone the end-of-life stuff for some other time. I protested that my husband was going to buy me new stuff because of my imminent death! He too, was confused.

I don't have the energy to assert myself as regards my things. They were boxed up in our last move and stacked in the garage or the storage unit. The hubby resists bringing things down to be unpacked with the reasoning that there's no place for any of it. This always ends in altercation so I just give up. After the POLST form (Physician Orders for Life-Sustaining Tx) visit, I expressed sadness at not getting to enjoy my things a bit before I die. He felt guilty and has brought some things down... I'll post pictures when I put them up. People wonder why there aren't shelves of books or art on the walls or clocks.

CS, Much love to you. May your new home be filled with all the things you cherish! If I remain standing after these next rip tides, I am painting the walls and going to Europe (stomps foot)! I am planting what I want and ants be damned! Bloody gophers too ;-)

BTW, Gail - Congrats on 4 years! Do go and spend more money, and travel so we can live vicariously through you

xoxo to all,
Jazz

That's funny actually as I am famous for getting rid of everything (a trait I've inherited from my father), and because the house is small, I've had a major attack of the throw-outs recently. The main thing I cherish is my husband (though not his socks, how is it that men have so many socks?)
I think the gophers have been planted there to distract you. If you listen at night, they are singing in a Disney-style chorus to send you to sleep.
Just tell your husband to bring your books and pictures down or we will all come after him!
I do like Dr Camidge's attitude. It takes a Brit....

Jazz, CS and Gail... I love you guys!!!!!
Debra

Ditto Janine. I hope some go without saying.

This is a great thread and it's nice to have somewhere to talk about our fears and irritations. I'm feeling good about our level of communication and honesty hear.

Cancer sure sucks! But so do lots of other things. A close friend died today, not of cancer, but of an infection that went to valves in his heart and subsequently caused lots of mini strokes. 6 weeks was all he had. And none of the time we have had to do the holidays, the planning, the communicating etc etc. I am sure my friend wold have loved the time we have been granted.

Gail

Jazz, I'm glad for you that your new doctor gives you much more reassurance. You're facing such a scary time and I'm glad he is there for you.

Gail, I am sorry for the loss of your friend. I lost a friend quite unexpectedly this summer to an aneurysm. Actually, it was because of what happened to her that made me go to the ER for the horrible headache that led to my diagnosis of a brain met. I think she was my angel, although it breaks my heart to see what her family is going thru and how much they miss her.

This thread is probably one of the best I've ever participated in on GRACE. It is so hard to be honest about how we really feel. We try to be strong for our loved ones and strong for ourselves, but sometimes we need to just say what's really on our minds. Thank you all for being here.

And, I have to say that I love you all, too. I was trying to explain to my husband last night how I felt when I read Jazz's news, and he can't quite comprehend how I can care so much about people I've never met. But I know that every one of you understands.

I'm sorry Gail. 6 weeks can be incredibly short. My condolences to all who were touched by this passing.
Debra

Thank you for starting this great conversation. There is indeed so much life that goes on between diagnosis and the end. In my own personal experience, I feel that in many ways, life seems to stop between those two endpoints. But I have been trying to remind my wife, whose mother is terminally ill and declining rapidly with stage 4 NSCLC, that we need to cherish each moment we have with her. This whole experience has really taught me to treat each day as a gift and to live it to the fullest. It certainly puts my priorities in place. If anything, I hope that by living a joyous and fulfilling life, we can honor our loved ones.

WHERE THE HECK HAVE I BEEN!!!!! I just saw this thread for the first time today. . .

All I can say is that I am even more in love with all of you after reading everything that you have written here than I thought possible. How brave and honest and true you all are! How raw and uninhibited! You amaze me!

cs: So happy about the MRI results and so sorry the whole ordeal stressed you out so much.

Jazz: I love Dr. Cambridge! See, it wasn't so bad after all. . .and you'll take on what needs to be taken on just as you always have. With great spirit and gusto! So, Beware Gophers!

Debra and Lorrie: I love you both. . .you know it. . .And, when the time comes a long long long time from now, morphine is your friend. It certainly was my Mother's. . .and there was no air hunger. Just a peaceful rest until we were told that she had passed.

Sherry: Funny thing about weddings and wedding dresses. One of the things that instantly brings me to my knees these days is the fact that my Mom will not be there for my kids' graduations, weddings, etc. Like my Mom, my eldest daughter is a total "girly-girl" - - and the two of them always watched the wedding shows together and commented on the dresses, etc. My mom always would say things like, "Well. . .at your wedding, we're going to _______." So, it just kills me!

Janine: Thank you for holding your nerve and for helping all of us hold our nerves along the way. You are an amazing woman!

Gail: I'm so very sorry about your friend. So very heartbreaking! But, selfishly, I celebrate your 4 years. So, hurrah to that!

dwhang & meanie11: I'm so sorry for what you both currently are going through. I wish you strength and peace. And I wish your MIL/Mom comfort beyond everything else.

Dr. West: As always, you are amazing and brilliant. Enough said...

Muwwwwwah!!! I love you all!

Laya

Nope. . . in "real-life" I'm pretty tom-boyish in attitude. . .My Mom and my eldest daughter have always desparately tried to make me more traditionally "girly". . .I actually think that with age I am becoming a bit more "traditionally" girly! And, for what it's worth, for the longest time my husband called me "Lawrence" as a pet name (mostly when I was getting on his nerves)...but I haven't heard that in few years ;O) . . .

Laya

Thank you Layla for the kind thoughts. I find your kind thoughts and positive energy to be quite contagious. Everyone on this forum is truly amazing, and there is strength in not traveling this path alone. "Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken." -- Ecclesiastes 4:12

Oops, I realize I keep saying Layla. Sorry LAYA!

Wow, how did I not subscribe to this topic earlier?

We're all in a nerve-wracking stages right now, aren't we?

Best to all,

Jazz

This seems a good place to take up residence, if no one minds. Thank you to those who have asked after me.
While we were busy with my airway and my stent, the cancer was busy elsewhere. The PET-CT scan report was so bad it was almost funny. I shall not go into the gory details but I have a tumour in my liver and various other bits and pieces. Nothing in the brain, which has been my greatest fear, or at the primary site in the lung.
Although I always knew this was coming, it has been hard to grasp how quickly the cancer has escalated during a period when I was generally, apart from the stent kerfuffle, feeling very well. No one could call this progression "subtle". The tiger is out of the kitchen and prowling all over the house. The question is whether we can throw something in his direction to pacify him for a little while longer.
I have to say that everyone has been great. My oncologist, with whom I have had difficulties in the past, has been humane and open-minded, ready to engage with other specialists where it seems useful, and being plain with me about the things I need to know. I've been fortunate to have advice and suggestions from a number of clever and compassionate people in different countries, some of whom I've never even met. It's very gratifying and motivating in a situation where the bigger risk is not cancer but despair.
There is no "plan" yet , and I am wary of the word in the context of a disease which is by definition uncontrollable, and where the best-laid plans get overtaken by events. Barely a week after my scan results I started to get pain in my right side and shoulder which I at first dismissed as psychosomatic (nothing to make you feel ill like knowing you've got a tumour in your liver) but which is, unfortunately, all too real. So we have spent a miserable weekend trying to get it under control. It seems that this is "capsule" pain from the liver or pressure on the diaphragm. Thank God for opiates and steroids, is all I can say.

cs,

I've read your post several times, trying to take it all in and come up with something to say that you don't already know (unlikely!) or doesn't sound ridiculous. It all comes down to the fact that this is an awful disease, and I am saddened that you are at this point. I hope that your pain can be controlled soon, because constant pain just makes everything worse. I also hope that your liver biopsy will reveal a new mutation which can be targeted.

I hold my GRACE family near to my heart, and you have been a prominent member of that family for the past three years. My thoughts are with you, sending you all the positive energy I can as you deal with this latest set of challenges.

JimC
Forum moderator

CS,

I am so, so, very sorry to hear of your progression. Jim just shared this with me as I came back home from taking my daughter to school. It brought many flashbacks for me as I think you know. I hope the meds are at least giving you some control over your pain in what feels like an uncontrollable situation.

I wish I knew why some of us are dealt such a miserable hand in this game of life...it's just not fair! I am at a loss for more words....

Lots of love and (((hugs))),
Lisa