I just finished reading a truly amazing book that I would recommend to all of you men here with prostate cancer and their family and friends. The book title is "When Breath Becomes Air" and it is by Paul Calanathi. Paul Calanathi was a neurosurgeon who was diagnosed with terminal lung cancer when he was only 36 years old. The book is a brutally honest account of his months with his terminal illness and how he coped with the highs and lows, the good news and the bad news and how he thought about death.
The interesting thing is that Paul read this book last year. He had borrowed it from the library. Shortly after his passing, I remembered this book and that I had said to him last year that I would love to read it myself. I just couldn't remember the title, I only knew that it had something to do with death and dying. Anyway, on the day when I was ready to go to tthe library and look up what he had taken out last year, I found the book under a pile of newspapers under our couch table. It was as though he had left it there for me.
Well, we will never know. But I really, really recommend this book.
Mel.
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The author is Paul Kalanithi. Many hits if searching on Google or other search engines.
I agree. A wonderful book. I read it when it first came out. Many parts of it approach poetic. I recall quietly reading it out loud to myself about 3 years after my incurable Stage IV diagnosis. It frequently brought me to (useful) tears as I continued to ponder my own future.
More recently, I've read the book, "Extreme Measures, Finding a Better Path to the End of Life" by Jessica Nutik Zitter, MD. I've known 5-6 men with advanced disease who have died with the past year, and this book which goes into considerable detail on end-of-life medical care options and precautions was also quite helpful in "going beyond" the sometimes vague and simplistic verbiage that so many of us may have in our Advanced Directives for Health Care and similar documents.
Thanks Melanie! I will get it & read it then pass it on to our oldest son whose PSA is trending in the wrong direction (although still “normal” at 2.6) but his prostrate is slightly enlarged so Urolgist is watching it. I do hope you are doing as ok as possible. It’s been almost 7 months since John lost his battle with this beast and I’m still coping with how to live life without him. All the best to you.
I am sorry to hear about John. I wasn't aware of his passing. I think we haven't exchanged many messages here yet. How are you coping? I hope you are doing okay. And of course I hope that everything is okay for your son too. Mel.
Thanks Mel. Between missing my husband terribly and concerns for our son coping has been hard. Although we knew the end would come someday - someday always seemed far away. Oncologist admitted John to the hospital on Tuesday 12/5/17 for observation and testing to see why he was retaining so much fluid. They also started him on morphine because the mets pain had gotten so bad. A few hours later I was told he wasn’t going to recover. His organs were shutting down and 26 hours later he took his last breath. Our sons and his sister were able to make it here in time to be with us when he passed. As you know there is absolutely nothing in the world that can prepare one for becoming a widow. He was my life and now I have life without him. I sometimes feel guilty about that. He didn’t want to die. He still had a lot of living to do. I would have traded places with him in an instance if I could have. So we just take it one moment at a time.
Lonni, thank you for your account of your last days/hours with your beloved John.
Yes, our husbands would still have had a lot of time to live and enjoy life, if this horrible disease hadn't made it so impossible to go on. Well, in my husband's case anyway, staying alive would have meant only more suffering: he couldn't eat, nothing tasted right, he was weak, he had this shortness of breath, fluid in his feet and leg, confusion from all the toxicity that his body could no longer deal with... He wouldn't have had a good life, if it had continued.
I think for the first weeks I was still in shock, reliving the situation in hospital, reliving our last days at home, asking myself if I did enough for Paul or, after having read Kalanithi's book, if I should have encouraged Paul less towards the end because I could have seen the end coming... you know, all of that.
But then my brother was here for a visit. He showed me videos that were taken when he was here in 2014 and 2015, and on those videos Paul sounds so well and healthy and happy with life. And that helped me to move on from the recent trauma to the pain of loss. I miss Paul terribly. Everything reminds me of him. It is hard without him. I am learning at the moment that I don't have to be strong anymore and that now I have to look after myself.
Thanks for the recommendation. I will order the book from the library. I have also recently read "A Grief Observed" by C.S Lewis and "The Year of Magical Thinking" by Joan Didion. Both worth reading. I read C.S. Lewis in one sitting and cried with him the whole way. It has been almost twelve weeks/three months since Terry died and I am struggling to get through each day without him. I hope that you OK.
I just tried ordering that book on Audible. Because of my vision impairment I need these books as audio books. I was disappointed to see that it wasn't there. And I requested it to be read on audio book soon. I would love to read it.
I am sorry to hear about your difficult time. I can of course understand how difficult it is. As you say, it is a struggle every day.
What I am finding interesting is that it has taken me a number of weeks to realize that I am no longer the caregiver, that I don't have to function all the time, that I don't have to be strong and that now I have to look after myself, which is something I don't want to do. When I mentioned this to my counsellor she said, "Well, of course, you haven't done that for such a long time that you have to learn it again." I think this is so true.
I am getting through my days okay. Everything is bitter-sweet. For example, we have a lovely summer here in Ireland but, although I am enjoying the nice weather, I am always thinking how much Paul would have enjoyed it and how much we would or could have enjoyed this summer. Well, we would have enjoyed this summer before he was so sick of course. Or I walk along a familiar street and think of him and find myself crying. I miss him terribly. And now that I am beginning to be less strong and less in survival mode for Paul, I can feel the pain of loss even more.
Dear Mel, Laura, Charles, and all, Thank you for your honest and helpful words from the other side of the great divide...well, the side of life without your Paul and your Terry. From this side, the hardest part is knowing/guessing what lies ahead. I fear seeing Les suffer more than he has already.
I appreciated this book discussion. We, too, have enjoyed all of these except Charles’ Zitter recommendation and, believe it or not, C.S. Lewis’s “A Grief Observed” (although we have read “Surprised By Joy”). Both “A Grief Observed” and “The Year of Magical Thinking” are available on Audible from Amazon. We’ve begun using Audible as we both need cataract removal. Our APC specialist doesn’t recommend having that done while on Zytiga/Prednisone/Xgeva. Tooth extractions come first which Les faces on Monday and me soon. Does stress cause tooth loss?
In a couple hours we’re off to my niece’s house a block or so from the Mississippi River for a family brunch. If the storms hold off we may take a walk along the river while we still can. How I wish you could both do the same with your loves. Only in your minds. Know that today you are in ours. Love, Jan—and Les
I hope you have a great day out. From what you say - when you say about the walk by the river - it sounds like you both are very aware that time is very precious. Isn't that the (for lack of a better word) gift of living with a terminal illness like this one? You really realize how precious time is.
Okay, so if both books are available to you from the US Audible store, then I think I can log on there and buy them from there. How do you log on? Is it audible.com or is there another ending?
Hi again, Mel. I’m thinking Audible must differ in Ireland? “Being Mortal” is also available on Audible in the US. Let’s hope your lovely land “catches up” in the listening department! I’m becoming quite dependent on listening to whatever book at night. Right now “The Goldfinch” by Donna Tartt. So far, I like the first part better than after Theo moves to Vegas and starts getting drunk with his friend Boris. Mrs. S
Yes, it seems like you can only use the Audible store of the country you are in. Well, one day I will get it. As for listening to books at night, yes, I am the same. It takes my mind off things and off the fact that my beloved is no longer lying beside me. Hugs to you. Mel.
The saddest nighttime image but am happy for you and me that reading is occasionally a slight salve. My own beloved has retired without much of a meal. He had his molar extraction plus two adjacent crown preps finishing at 4 p.m. Now he hurts enough to go to bed at 8. He will surely heal in time for the Xgeva shots. Phew. This is all an incredible balancing act. Hugs back. Jan and Les
Good afternoon, Mel. You can be sure we’ll keep you informed. Thanks for asking. The next update will be after Les’s blood test July 31st. He is much recovered from all the tooth trauma and thinking about how deeply to transplant the vigorous zucchini plants from hot house into the garden as he finally has the front garden weeded. I eliminated purslane, etc. from the onion row which took a couple of hours on my knees.
Right now I’m listening to an old CD transferred from an aged Mac using an app called Senuti (iTunes spelled backwards). Now it’s synched to Amazon Music on my iPad, a Sony disc with Murray Perahia playing the 1st Bach Partita. Lovely! Long ago I played the 2nd Partita as part of a required program for an MFA at the U of M. Tiny repertoire here. Just cooking and knitting these days—plus the solace and challenge of writing to all of you. Wishing you peace and good memories. Jan
Hello in mid-summer, Mel. Thanks for thinking of us. We trust your “recovery” (to the extent one ever does after such a loss) is progressing better than expected and that you are finding your days more bearable and even productive. Maybe it’s too soon for the latter?
Yesterday was a far more complicated day than it needed to be which was my doing, not my husband’s. He was a “good boy” who bravely concluded his dental appointments before beginning Xgeva. Btw, our dentist, who had just experienced a bout of vertigo while fishing, (horrors) asked Les if it was okay if he prayed out loud for him. My former seminarian accepted gratefully. “Sweet” way to conclude his dental ordeal. So Les is done for six months, and I’m the scaredy-cat procrastinator (as Nalakrats knows) who has decided not to have crown lengthening but instead extraction of a molar. If anyone else on this site is struggling with tooth issues especially the men as it relates to Xgeva and the threat of ONJ, I have some helpful and sometimes fun Google links with a gaggle of dentists amicably arguing back and forth about the issue.
Back to my self-imposed complications. I’m sure I’m not alone in finding something(s) desirable, if not indispensable, on Amazon’s Prime Day in the US but also UK—not sure about Ireland. I “invested” in a half-price buy on Turmeric/Curcumin even though it wasn’t from Chapter One (sorry again to Nalakrats who, although taking a deserved break, is still in mind). The bigger struggle was installing Firestick on our aged Sony TV. It’s now partially working, but so far I prefer Chromecast which I may reattach. After serving Les lunch, I “Sous-Vided” (a non-verb) for the first time using the following tool: (Couldn’t send a photo. Check out the Anova on Amazon.)
I don’t yet own a vacuum sealer nor a dedicated plastic container, just the Anova Bluetooth Immersion Circulator with which our iPhone 6 refused to pair. The iPad did, so I Sous-Vided chicken breasts to 149 degrees. (How about that for precision?) The meat was a bit tough but will improve with searing and be edible in salad with Les’s fresh lettuce. In conclusion about Prime Day, I’d say the Anova beats the Firestick at least for us. I won’t return the latter as our amazingly durable 2005 Sony TV can’t last forever.
Next recipe? Maybe salmon with hazelnuts and coriander as seen in The NY Times cooking app. If all this sounds luxurious, you should see our driveway, 2005 Chevy pickup, and unpainted house.
Too bad I can’t include a photo of Les’s front garden, the part that is weeded, broadforked, planted, and underway even if a couple months behind schedule. I credit Zytiga + prednisone for supplying the energy to, daily, arrive back at the house totally done in and sweated out.
Post coffee, toast, and Zytiga, Les is preparing to head for the garden to finish the planting. He sends greetings.
I may find an appropriate place on this site to reveal my most recent update to our doctors.
With a smile and positive well-wishes for us all, you especially today. Mrs. S/Jan
P.S. On the reading front, I have 45 minutes left listening to Donna Tartt’s first novel, “The Secret History”. It resembles her prize-winning second novel, “The Goldfinch” in its portrayal of good and evil upon one tether, not always running beautifully together. Alas? You can’t have one without the other. If a person thinks so, he or she is deluded, IMO. (You already know I’m humble enough.)
After Terry died, I kept myself so busy. All the notifying people and legal stuff. I changed my name to his because I had always meant to but somehow never got round to it because of all the medical issues that we were going through. It took ages. Visits to banks, sending legal documents to so many places. They all want DC, Marriage Cert and copies of the will. Its nightmare stuff. I have also downsized, de-cluttered and tried to get all my legal issues in order. New will, Living will, wishes etc Because basically, I don't want to be here without Terry.
It's all done now but now that it's all done, I have fallen in a heap. A mess you could say.
I feel so lonely but not for people, just for Terry. He was my rock, my world, my everything.
Someone we both knew well said to me recently "I am so sorry you lost your Terry" and that was the most real and meaningful thing anyone has said. I lost my Terry.
So, one day at a time, one breath at a time, one step at a time until it's my time.
I can relate so well to everything you say in your post.
The first couple of weeks weren't too bad because there was so much to do and to sort out. And now that it's all done I too can feel the loneliness. As you say: not loneliness for other people, but loneliness for my man. I miss him and everything reminds me of him. I want to share with him what I do and talk with him as I used to. When my counsellor asked me last week, "Well, if you could talk to him now, what would you like to say to him?" that was the question that really made me cry. Because it made it so clear to me that, while I can't talk to him as I used to, I would love to and there would be sooo much to say.
I used to be strong at first, you know, because I was used to that kind of life. I had been fighting with Paul for so long that fighting was what I knew how to do, but looking after myself, slowing down to actually feel who I was and what I needed, that had become very strange to me. But now that the stress falls away bit by bit, I can feel my grief and my sadness more and the good memories can come up rather than always being stuck in the memories of our last few weeks.
I am sorry you are going through such a difficult time missing your Terry so much.
Yes, we'll take it one day at a time. That's the only think that works.
What I am realising as I go through each day is that there are so few of us that had this bond, this soul mate bond, this one half of a whole bond that will never recover from the loss of our "other half". There will be no "getting over it", "moving forward" etc etc etc.
A friend visited me yesterday and suggested counselling. I know what Terry would have said to that! I have been through lots of serious stuff in my life including, very unpleasant divorce, loss of two sons, loss of a much loved mother and now Terry the love of my life. What is any counseller going to tell me that would make any difference? Sorry, that's just my (and Terry's opinion).
The thing is that from the day he died (even though I knew that it was going to happen which didn't help) I have kept moving forward with "our plan". To finalise the things that we had in motion that Terry could not complete for obvious reasons. Now it's up to me, and I am doing it for us. This is the only thing that is keeping me going and when it is all done (if I last that long) I can go in peace. Knowing that I did my best.
I talk to him, ask his advice and debrief each evening about the day, just as we used to. Crazy?? I don't know but who cares??
Mel, shame you in Ireland and me in Australia eh? You have vision problems and I have mobility problems but we have both lost the loves of our lives.
It would be lovely if we were both in the same country, wouldn't it? We could meet up even some time. But at least we can connect on here all the time.
I think that people have to have the experience of being with their soul mate, the experience of this special bond where when one is no longer there it feels like the other half is gone, in order to understand what we mean. I think it is very special to have had that kind of connection with another person in one's life.
In the hospital where Paul passed away the doctors and nurses said that they were always struck by the depth of our bond and love for each other. And, while it is lovely to hear that, it is also very painful because we were given so little time, only nine years, and only in the last three years we were settled here in our own home and married and everything felt as if it should continue forever and ever. Well, only until Paul's suffering became more and more unbearable of course.
As for counselling, I completely understand what you mean. I am seeing a counsellor from St. Luke's Cancer Hospital once every week. At first I felt it was pointless because what could she tell me that I didn't already know? But then I realised more and more that it is not so much about the counsellor telling me things but about me talking and reflecting myself and my experiences during the session. Last week, for example, I cried in front of her saying that maybe I didn't say goodbye to Paul in the right way, maybe I should have hugged him instead of putting my hand on his heart, and then I suddenly stopped and sort of heard myself say that and I said to her, "But he loved when I put my hand there. He always loved that." And so there I reflected and was able to see that, indeed, I did not have a reason to do otherwise. So I have come to appreciate the counselling actually. But what I don't like is when she says, "You will heal." Because I feel there is no healing from loss. You learn to live with it and adjust to it, I think, that's all.
I am keeping myself busy with work and with other things that I enjoy doing or that the two of us enjoyed doing. And, like you, I ask Paul for his opinion or advice and I talk to him. Of course nobody knows if there is actually a spirit somewhere or some energy or soul or whatever you want to call it that we can talk to and that can hear and understand us. But maybe there is... Nobody knows that. I like talking to him anyway.
I thought I'd check in with you and see how you're doing.
Until yesterday morning I was doing okay. Just getting back into work as much as possible, socialising as much as possible, living life as best as possible. But when I was sitting at my computer yesterday working on a transcript - this was after I had decided to bring Paul's shoes to a nearby charity shop in the afternoon - I broke down completely and cried uncontrollably for hours. I suddenly got flooded with memories like "County Clare, how wonderful it was to be there with him" or "The nearby forest and our playfulness there" but they were also the realisations that we would never do these things again. I was feeling awful all day. Today I have to go to see the counsellor again in the hospital where Paul died. I hope it will be a good session, but I have a feeling that I will mostly spend it crying. Nobody can take this pain away, nothing can take this pain away, it's loss and it is irreversible.
It's good to hear that you were doing ok for a while. That's something positive I guess.
It's good that you have work and social interaction too.
Like you, I have been trying to keep busy and move forward slowly but surely with our plans. Terry and I had so many things to do. The previous house we lived in needs to be sold, our caravan and tow car needs to be sold and the house that we are living in now needs painting inside and out. And, I've had quite a few things go wrong, break down or need fixing since April and no Terry to fix them!
I find that I am not crying multiple times a day, every day anymore but it still comes over me like a tsunami and I'm off. The pain is unbearable and I have never felt so lonely in my life and its loneliness for Terry. I don't think the pain will ever go away either, but perhaps as time goes on we can learn somehow to live with it. We don't have much option do we?
Good luck with your counselor today..I do hope that she helps. Let me know how you go. Did you manage to get the audio books?
It's good to hear that you too are moving forward with things slowly and surely and in your own time. I am sure Terry would be proud of you.
Yes, the feeling of pain and loneliness is unbearable. There are times when it is not so strong; I mean, there are even times when I feel quite good in myself; but when it is there it is very extreme and the knowing that there is no way out of this pain, like it is not like with a row where you make up afterwards and everything is fine, is crushing. I suppose we will learn to live with this pain after a while. I don't like when people say to me, "You will need time to heal" because: heal from what? It is not like I have gone through a terrible breakup or something, it is that I have to live with the loss of the person who is most dear to me and with whom I still wanted to do so much. So, yes, I think we will learn in time to live with the pain and somehow cope with it, but I would never call it healing.
I will let you know how I get on. And it is a good idea to switch to private messages I think, because this thread could get very long And this is really a forum for those who are fighting this disease.
As for the books, noo, they are not available through Amazon UK. But I can get abridged versions which, I suppose, is better than nothing. Currently I am reading "The Five Invitations: What death can teach us about life" or something like that it is called. It is by the founder of Zen Hospice Project in San Fransisco. Very good book.
Hi, Mel, plus everyone replying to her last post. First, to answer your question, Ms. Ireland. Amazon’s app is in our dock, and we have an account. I click on it and then type in the title of the book I’d like to read about or buy. Up come the format options which sometimes include Audible. Sometimes you get two-for-one. Other times I have one credit for having bought a book. I’m not saying this is cheap, but it is a lifeline to living in another person’s brain for a while. I’m a beginner at listening to books, and I hope it results in my becoming a better listener in general.
We had a wonderful day with the family even though we only drove, not walked, Mississippi River Blvd. We went to the New French Bakery outlet which was like Christmas for Les. Although our brother-in-law preaches both the gospel of Christ and anti-carbs, my husband loves his toast especially if it’s 2 or 3 dollars a loaf. Les has baked great breads (I have the photos to prove it), but this sale was almost like old times standing in line at the discount store Banks with Carl Eller of Viking fame hoping to find just about everything we now live with, i.e. less-than-perfect Baker furniture, disconnected Krell sound equipment, etc.
This afternoon the family spoke openly and understandingly about Zytiga and more—even about you, Mel, Laura, and CaregiverWife. We were so sad to read about your husband, John. Now I’m writing to three recent widows. Please, dear God, stop this runaway APC train!
Time to say hi to you, j-o-h-n. The video you shared about “When Breath Becomes Air” tops my list of heartbreaking yet, strangely, uplifting videos about what it is like facing terminal cancer when so young. I’ll always picture Paul and Lucy Kalanithi getting his death notice in a microsecond, as she said, while looking at the CT scan alone together at Stanford. The way they dealt with those results is a monument to the human spirit and a lesson to me again today. Thank you for the reminder.
All for tonight except to tell you about our beloved niece and husband who hosted our get-together in Minneapolis. Her mother, Les’s sister and husband, were also there from Des Moines. Carmen Peota was our flower girl in 1962. Today she is sixty, a fact my husband cannot absorb. She has finally retired after more than 15 years of editing “Minnesota Medicine”, a magazine for physician members of the MN Medical Society. These days she’s happily working at the airport directing indoor traffic, answering questions, and trying to solve sometimes unsolvable problems. It also makes it possible for her to fly anywhere. The last time was to Iowa when her father (minister/painter) had a heart attack. He had a stent put in, went in for a second one and had none because there was no plaque at all. He’s once again painting three-story houses at age 85! He says he’s fine. That was the happy surprise of our day.
Must bring this to a halt. Les has fallen asleep. You can read Carmen if you like. She is free lance writing for midwesthomemag.com. Here is a tiny sample for purposes of brief distraction. Mrs. S
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And this is really a forum for those who are fighting this disease. 
Never know when time is up…
When do I go from here?
