Nicole checked phone messages the other day and there was one from a dear lost friend. I called back and found out that someone I once loved had died. I was elated. Overjoyed. I danced on that motherfuckers grave. Then I felt ashamed. I never have felt that way before. The departed was my blog troll. The one who showed up to wish me death and tried to ruin my voice. He also cost me a friendship of over 40 years. That was what he wanted, and he got it. He scared Nicole. He cost me so much. I think I have come to terms with my feelings. I hope I never feel this way about another human being again.
I was rather bummed out last week when I wrote about the new tumour and no transplant. I still am. I am no longer on my "Action Plan" which means I no longer can prescribe myself Avelox and prednisone when I feel an infection coming on. Now I have to wait until I get sick and then present to ER. I currently have an infection in my lungs and we are waiting for it to get serious so I can get intubated or something. Damned if I know.
Nicole is crying a lot the whole last week. All she has to do is look at me. I am alternately sad then angry and oh so sad, powerless and small, very small. Anyone who knows her, who knows what she has been through, what she will have to go through should be very ashamed of themselves for leaving her to her own devices while I struggle to live. This breaks my heart.
I have no idea what is next. The last few days have been difficult indeed. My breathing is getting worse fast. The fires are getting big. Our property a disaster area. I put in earbuds and wait for what I do not know. I only got energy to breathe now. Anything else, its on someone else. There ain't anyone else and I am broken. There never will be anyone else.
I think this will be the last post. I feel like my blog is becoming grotesque now. Mostly I feel scared I am going to become more alone than I am now. Everyone leaves. It's pretty damn lonely inside me. I accept that I am responsible for everything that happened in my life. Just me did it all. I am rather glad that I no longer feel an overpowering need to understand why. Why anything and everything really. Shit just is. Maybe I got over myself.
It's time for me to think about my exit plan. This is not a disease you sit and watch consume you unless you are really into suffering and like strokes and stuff. So, thought has to be given to how and when I leave our world. I had a 50% chance of being alive in two years, five years ago. Shit does not get more real. I am terrified of being locked in. I have no energy left to fix things with, my mind does not work as well as it did. Anxiety grinds me to a halt. I watch life happen to me while being unable to affect life or things around me.
This is my morning. Writing actually has calmed me.
love
I will find my moment and live in it
I will
For all the encouragement I found here, I thank you! There was so much help and at the right times, so many messages of understanding. Sometimes that was all I needed to bounce back well. You all gave me the most precious gifts of all. Your time and your love of a fellow traveller. Graciousness that I will treasure forever. Not one stranger ever uttered a discouraging word, there was only love, encouragement and understanding. From the bottom of my heart I thank you!
I ain't going away. I think I will start posting more on G+. Music, my cats, musings. I dunno. I will get more active. I need community. I can't live without community.
Thursday, 11 June 2015
Wednesday, 3 June 2015
The Dream Lives on Forever Song by Todd Rundgren
I saw the Dr on Monday. It was a routine visit to confirm the results of the ct scan on May 24th. I knew it was routine, everything had been ok for almost two years. Only it was not ok. There is a new tumour. My window closes on Feb 28th 2017 here in Quebec. There can be no transplant after that, I will be too old for this jurisdiction, no hope of ever trying another one either. Known tumors must show no growth for two years to be eligible for lung transplant, here in Quebec. The Dr. cut me some slack. If it miraculously disappears in the next three months he may consider forwarding me. I get a scan in September. There is no more hope. I promised Nicole I would stay on track for the summer. Keep hope alive. I don't have any, I don't want any. I want it to end before it's too late. Strokes, heart attacks, being left a veg. Fuck that. I know what is ahead and I want none of it. We are pretty sure I had a TIA in the last couple of months as it bloody is.
I am scared. I am alone and that is not going to change. Nicole can't cope. Our world crashes in around us. Every option is more impossible than just staying which is impossible anyway. I can't breathe if I even think about it. It all just will happen. Lovely. A few more months, Russ. Focus, while not focusing. I will never leave this house alive, I will never sell it to extend my miserable existence by a day. It makes no financial sense in the world, it will never happen.
In spite of it all, this delusional man finds peace in the middle of the night when all is silent. May you all be so lucky. I have had the luxury of time to reflect and make peace. I have done so. I found kindred spirits through my blog. For the better part of three years the G+ platform and an online game provided me with community. FB, the telephone and normal networking activities did nothing to ease my growing isolation. The blog only served to distance people in my RL further from me. There are no reconnects. Life moved on. Perception is reality and time is unavailable. The blog served a useful purpose for me for a period. I will hopefully make a couple more entries between now and the end of the dream in September. This blog will terminate the day the transplant dream dies officially, September 24th, baring a miracle.
Love
In the moment
I am scared. I am alone and that is not going to change. Nicole can't cope. Our world crashes in around us. Every option is more impossible than just staying which is impossible anyway. I can't breathe if I even think about it. It all just will happen. Lovely. A few more months, Russ. Focus, while not focusing. I will never leave this house alive, I will never sell it to extend my miserable existence by a day. It makes no financial sense in the world, it will never happen.
In spite of it all, this delusional man finds peace in the middle of the night when all is silent. May you all be so lucky. I have had the luxury of time to reflect and make peace. I have done so. I found kindred spirits through my blog. For the better part of three years the G+ platform and an online game provided me with community. FB, the telephone and normal networking activities did nothing to ease my growing isolation. The blog only served to distance people in my RL further from me. There are no reconnects. Life moved on. Perception is reality and time is unavailable. The blog served a useful purpose for me for a period. I will hopefully make a couple more entries between now and the end of the dream in September. This blog will terminate the day the transplant dream dies officially, September 24th, baring a miracle.
Love
In the moment
Sunday, 24 May 2015
Losing
Too much to say too much noise. Negative abounds. That evil self destructive voice is lurking, drawing me in. I hear it in the shadows. If I am consciously aware, catch it happening, it can't make me do things to harm myself. I am sure getting depressed would be very bad.
Had the two year scan this morning. It marked two years of no change in a tumor thought to be cancerous. That tumor cost me two years of listing. I am now waiting for my Dr to confirm and send me to get listed if if if if if if if.
I will go, I will try. I will fail.
I am losing all around strength now, muscles fading. I can't put out enough energy to be stable anymore. I feel shit in my chest.
Nicole and I are living intensely, too much so. She voices her fears about her future, she knows I got little left to fight with. She cries sometimes when we talk about how she is going to have to try very hard to not lose her autonomy. I am trying so hard to make it easy. Failing there too.
I reckon I can juggle shit and keep us in our home for a while. That I won't fail at. I leave here in a box.
Sweet, sweet visit from my game friends. I felt so much love. A highlight of my life. One day I might write about cookie and the game. Scott stayed five days. The others a day. I cried a little when scott left.
Ear buds, music and back to chill thoughts. I manage to stay in most moments, with a little help from my friends.
Tuesday, 28 April 2015
Deeper
Last week I visited the Dr. He did his dr thing, shook his head and said, "just keep doing what you are doing'. He is a fine, highly respected respirologist. He listens to me and tapers his treatments to fit my overall wishes. The only thing we are at odds with is prednisone, and even with that we found a compromise.
One last CT scan to go to declare me cancer free. That will take place within 30 days. Immediately afterwards Dr. Poirier and the thoracic surgeons at Notre Dame will bring me in for the big eval.
I may not do it. I might not. Right now I am remembering and reminding myself that I do not have to have a lung transplant if I dont want to. This next step at Notre Dame will not be fun. It will involve many, many, invasive, painful procedures. All the stress and load on Nicole to come, its already too much for her, how can I watch her try to cope with more and more on her own?
I start gasping and suffocating the minute I wake. I get cold to the core within 30 seconds and start shivering uncontrollably, which exhausts me instantly. This started a week or two ago. We think I came close to collapsing a lung. I get under a blanket right away. Nicole gets me tea and my meds and cannacaps. The cannabis keeps me alive and has been doing so for a couple of years now. Nothing else slows me down enough to maintain control while I am trying to remain active. The side effect is laughing. I can live with laughing.
Two days later I pick this up. The whole world is upside down. I received the CT scan date, May 24, a Sunday, earlier today. I was really upbeat for about an hour and then everything changed. The whole reality of what I am about to face hit me hard in a flash. I thought I knew what I wanted, where I wanted to go. I do not. I do not. I am not filled with doubts. I am filled with certainty. I do not want it. I do not want a lung transplant. When The Dr. told me I qualified for one twenty five months ago I was very sick, I was enduring heart attack after heart attack on my own dismissing them as breathing attacks of some kind. I knew nothing. My quality of life was poor. I had no coping skills. Two years later, I have gone through months of training and therapy, mastered breathing skills and I am very strong in every way other than my dead lungs, more fit in many ways than I was twenty years ago. Everything still works. I never dreamed I could be as happy as I am now, almost every second of every day. Euphoric, in the moment, never out of now. As I think I wrote back last August, this truly is heaven on earth. I have everything I need or want in this moment.
When I met the surgeon in February 2014, he was wonderfully, brutally frank with me. He told me it all would come down to my quality of life. That would be the deciding factor after all the physical and mental workups and evaluations. Quality of life. I am not sure anymore if I want to give up what I have for what I might gain. I was when I woke up this morning. I did not see this coming. It has hit me hard. I thought I had it all figured out. I don't, and I am afraid. Afraid of messing up what I have now, chasing after potential happiness that I have in my hand already, missing all the moments that could have been while I focus and fight and think. I have not had to fight or focus or think for a long time now. I'm told that I am a great patient. I do what my Dr and I agree on doing. Always. With great enthusiasm. My orders are to continue eating, sleeping, exercising and playing. I can handle this. I find myself with a quality of life I never would have dreamed I could achieve. I am terrified, right, now of risking that.
A couple of remarkable things:
On the same day that I fate decides to hammer me with uncertainty over if I want to seek any more treatments or just let things be, a good friend with a reoccurring cancer freshly discovered, again, is facing the same dilemma. He has to decide fast if he wants part of his face removed. He does not think he does. We talked a lot today.
I started playing a game last year and found a family. Two of my clan friends are flying over from Europe, and a bunch of others are flying and driving up from various points in the USA, to have a week long party at my house in a couple of weeks. I pinch myself over that.
Love
One last CT scan to go to declare me cancer free. That will take place within 30 days. Immediately afterwards Dr. Poirier and the thoracic surgeons at Notre Dame will bring me in for the big eval.
I may not do it. I might not. Right now I am remembering and reminding myself that I do not have to have a lung transplant if I dont want to. This next step at Notre Dame will not be fun. It will involve many, many, invasive, painful procedures. All the stress and load on Nicole to come, its already too much for her, how can I watch her try to cope with more and more on her own?
I start gasping and suffocating the minute I wake. I get cold to the core within 30 seconds and start shivering uncontrollably, which exhausts me instantly. This started a week or two ago. We think I came close to collapsing a lung. I get under a blanket right away. Nicole gets me tea and my meds and cannacaps. The cannabis keeps me alive and has been doing so for a couple of years now. Nothing else slows me down enough to maintain control while I am trying to remain active. The side effect is laughing. I can live with laughing.
Two days later I pick this up. The whole world is upside down. I received the CT scan date, May 24, a Sunday, earlier today. I was really upbeat for about an hour and then everything changed. The whole reality of what I am about to face hit me hard in a flash. I thought I knew what I wanted, where I wanted to go. I do not. I do not. I am not filled with doubts. I am filled with certainty. I do not want it. I do not want a lung transplant. When The Dr. told me I qualified for one twenty five months ago I was very sick, I was enduring heart attack after heart attack on my own dismissing them as breathing attacks of some kind. I knew nothing. My quality of life was poor. I had no coping skills. Two years later, I have gone through months of training and therapy, mastered breathing skills and I am very strong in every way other than my dead lungs, more fit in many ways than I was twenty years ago. Everything still works. I never dreamed I could be as happy as I am now, almost every second of every day. Euphoric, in the moment, never out of now. As I think I wrote back last August, this truly is heaven on earth. I have everything I need or want in this moment.
When I met the surgeon in February 2014, he was wonderfully, brutally frank with me. He told me it all would come down to my quality of life. That would be the deciding factor after all the physical and mental workups and evaluations. Quality of life. I am not sure anymore if I want to give up what I have for what I might gain. I was when I woke up this morning. I did not see this coming. It has hit me hard. I thought I had it all figured out. I don't, and I am afraid. Afraid of messing up what I have now, chasing after potential happiness that I have in my hand already, missing all the moments that could have been while I focus and fight and think. I have not had to fight or focus or think for a long time now. I'm told that I am a great patient. I do what my Dr and I agree on doing. Always. With great enthusiasm. My orders are to continue eating, sleeping, exercising and playing. I can handle this. I find myself with a quality of life I never would have dreamed I could achieve. I am terrified, right, now of risking that.
A couple of remarkable things:
On the same day that I fate decides to hammer me with uncertainty over if I want to seek any more treatments or just let things be, a good friend with a reoccurring cancer freshly discovered, again, is facing the same dilemma. He has to decide fast if he wants part of his face removed. He does not think he does. We talked a lot today.
I started playing a game last year and found a family. Two of my clan friends are flying over from Europe, and a bunch of others are flying and driving up from various points in the USA, to have a week long party at my house in a couple of weeks. I pinch myself over that.
Love
Friday, 17 April 2015
Dear diary
I see the Dr next Tuesday. Nothing much has happened regarding transplant. The ball is about to start rolling again.
Think of me as a light bulb. When I started this two years ago I was a 75W bulb. I am 15W now, and the light is flickering. It is getting scary.
I talk to Nicole about my feelings. I have not been able to bring myself to write expressively here. The hate that comes my way makes it not worth it, the lack of understanding from those closest as well.
I know who and what I am. That is unshakeable. I will not allow anything negative to touch me.
I am happy. More so than ever. Regardless of what happens to us we will remain happy, Nicole and I.
Cheers
I wont post this on G+ yet. Hope some friendly eyes find it.
Cheers
Love
Think of me as a light bulb. When I started this two years ago I was a 75W bulb. I am 15W now, and the light is flickering. It is getting scary.
I talk to Nicole about my feelings. I have not been able to bring myself to write expressively here. The hate that comes my way makes it not worth it, the lack of understanding from those closest as well.
I know who and what I am. That is unshakeable. I will not allow anything negative to touch me.
I am happy. More so than ever. Regardless of what happens to us we will remain happy, Nicole and I.
Cheers
I wont post this on G+ yet. Hope some friendly eyes find it.
Cheers
Love
Sunday, 8 February 2015
Get off my lawn
I turned my blog back on this morning. Good for me.
A ground rule: If you care to comment it has to be somewhat positive or encouraging or please don't bother I will only delete it and block you
This is not a place for dialogue, its my monologue Please leave if you have issues with that and refrain from bothering me about it. Your views have NO place in my blog.
We had over 20 calls yesterday that went to voicemail leaving full messages of silence. This has been going on since last June. We are going to cut the phone off.
Had to make choices this week about what to pay and what not to pay. Cable internet turn. Probably will not have internet for a week or three. No problem. I will be back when I can.
I could not possibly be more discouraged about shit.
love
A ground rule: If you care to comment it has to be somewhat positive or encouraging or please don't bother I will only delete it and block you
This is not a place for dialogue, its my monologue Please leave if you have issues with that and refrain from bothering me about it. Your views have NO place in my blog.
We had over 20 calls yesterday that went to voicemail leaving full messages of silence. This has been going on since last June. We are going to cut the phone off.
Had to make choices this week about what to pay and what not to pay. Cable internet turn. Probably will not have internet for a week or three. No problem. I will be back when I can.
I could not possibly be more discouraged about shit.
love
Wednesday, 28 January 2015
Bad days
I checked phone messages this morning and found one from my nurse saying she had received good news about my last echo cardiogram. Wants me to call her about getting into another round of pulmonary rehab. Supposedly I am a good example for others.
Fucking depressing. I have not called back and I doubt I will.
My two driver angels have a combined age of 160, bless them. I can only ask so much. Pete has a day job and problems of his own and lives 50 miles away. Thats it. Thats all. Nada anything or anybody else. Not one single other person, family, friend or acquaintance offering help of any kind, ever.
Nicole, bless her, is fluently aphasic. Look it up. Ya, I know, She seems fine! She does heroic work. I love her so much.
Lung transplant takes financial stability. We are bleeding at a rate of a few hundred a month for a few years now. Got no more juggling tricks up my sleeve. We are fucked beyond. We will never make it. I cant fathom anything anymore. Nicole cant. Too bad.
Takes a team. Ha!
I simply do not have energy for the stuff that has to be done for normal life to happen and I am out of options and people to ask for help.
I dont feel good at all. The sense of suffocating never goes away now, ever. I am able to cope, though.
Sometimes being an infernal optimist makes no fucking sense at all. It is hard not to be bitter. I try very hard not to be. Mostly I am not.
Would have been easier on me if the test results had been bad. Then at least the ultimately unachievable transplant hopes would be done with. As it is now, I get to watch it fade away instead. It could be mine if enough people cared. Lovely. Rub my nose in it, please! Sweet.
Last couple of months I run out of all my meds before the end of the month and do without. I told Nicole this morning. She did not know. I am feeling somewhat angry so I know I am missing the ssri one. Its payday! Nicole will pick up the drugs later today.
I feel so fucking guilty writing this stuff but it matters! I matter! I am here! Dont read if you dont like! Tell me I deserve any miserable thing that happens to me! Anything. If you think I am asking for money change the channel and don't bother me.
I am still fighting. I still love. I am afraid. Imagine rationalizing when you should die, when might be the optimum time for all concerned. You already know you cant do the ride till the end. Thats a given. Imagine lack of help and fucking money factoring into your calculations. Depressing.
Love.
Fucking depressing. I have not called back and I doubt I will.
My two driver angels have a combined age of 160, bless them. I can only ask so much. Pete has a day job and problems of his own and lives 50 miles away. Thats it. Thats all. Nada anything or anybody else. Not one single other person, family, friend or acquaintance offering help of any kind, ever.
Nicole, bless her, is fluently aphasic. Look it up. Ya, I know, She seems fine! She does heroic work. I love her so much.
Lung transplant takes financial stability. We are bleeding at a rate of a few hundred a month for a few years now. Got no more juggling tricks up my sleeve. We are fucked beyond. We will never make it. I cant fathom anything anymore. Nicole cant. Too bad.
Takes a team. Ha!
I simply do not have energy for the stuff that has to be done for normal life to happen and I am out of options and people to ask for help.
I dont feel good at all. The sense of suffocating never goes away now, ever. I am able to cope, though.
Sometimes being an infernal optimist makes no fucking sense at all. It is hard not to be bitter. I try very hard not to be. Mostly I am not.
Would have been easier on me if the test results had been bad. Then at least the ultimately unachievable transplant hopes would be done with. As it is now, I get to watch it fade away instead. It could be mine if enough people cared. Lovely. Rub my nose in it, please! Sweet.
Last couple of months I run out of all my meds before the end of the month and do without. I told Nicole this morning. She did not know. I am feeling somewhat angry so I know I am missing the ssri one. Its payday! Nicole will pick up the drugs later today.
I feel so fucking guilty writing this stuff but it matters! I matter! I am here! Dont read if you dont like! Tell me I deserve any miserable thing that happens to me! Anything. If you think I am asking for money change the channel and don't bother me.
I am still fighting. I still love. I am afraid. Imagine rationalizing when you should die, when might be the optimum time for all concerned. You already know you cant do the ride till the end. Thats a given. Imagine lack of help and fucking money factoring into your calculations. Depressing.
Love.
Monday, 26 January 2015
Monday at the front
Most of the time I am able to bliss out, more or less. I don't know which world is which anymore. The happy optimistic fellow enjoying his days or the lonely and crushed fool watching his world get smashed bit by little bit.
It's all fun and games until the world comes crashing in. Then I know, I see. I see nobody. I hear nobody. Nobody wants to know, really. So it is. So I made it, obviously.
There will be no miracles or second lives. The transplant clock will tick down along with all the other clocks until everything I have or am is smashed to bits. I fought and fought and did everything I could to keep the moment away. I did. I am proud of me still. I loose.
I so wish I had started this blog anonymously. Alice was right about that. Spilt milk. Nothing to do now.
I will be ok. It's in my DNA. I know that now. Even at the very end I will see the good, I will be the good. I am very thankful for that.
I think I will go back now........
love
cat pics soon G+
It's all fun and games until the world comes crashing in. Then I know, I see. I see nobody. I hear nobody. Nobody wants to know, really. So it is. So I made it, obviously.
There will be no miracles or second lives. The transplant clock will tick down along with all the other clocks until everything I have or am is smashed to bits. I fought and fought and did everything I could to keep the moment away. I did. I am proud of me still. I loose.
I so wish I had started this blog anonymously. Alice was right about that. Spilt milk. Nothing to do now.
I will be ok. It's in my DNA. I know that now. Even at the very end I will see the good, I will be the good. I am very thankful for that.
I think I will go back now........
love
cat pics soon G+
Tuesday, 6 January 2015
Deep Freeze
This morning I am forcing myself to write. It's time I did. Way too much inside, way too much weight.
My visit with the Doctor in early December had positive results on one front. The growth on my left lung has not changed in any way. It will be two years unchanged in late April I think, should it stay the same. There seems to be no reason to think that it will change. The doctor thinks it is a scar. The doctors at the Jewish had not heard from the doctors at Notre Dame so whether or not my heart is now up to transplant standards remains unknown. I have not called for the results. The doctor and nurse emphasized remaining comfortable, stress free and as active as possible. The prognosis is grim indeed. I have gone far further than most ever could. I have a little left still. I still have not gotten my flu shot. Did not want to bother the guys who take me to the hospitals, take a taxi or beg someone. I have to figure it out myself and I just can't anymore.
Nicole made Christmas season awesome. I was so ready, I let myself go and enjoyed it immensely. It felt like my first and best Christmas ever. A couple of weeks of childhood memories was lovely. Peter joined us for Christmas dinner. Christmas season with just the two of us at home felt fine. It was not what I would have chose but there is nothing I can do about anything anymore. Breathe. We had a lovely visit from a little girl and her parents. We are still beaming from her loveliness and your thoughtfulness.
I dont think I will have a transplant. Too much lined up against me. The level of support that it would require is not there. We can't manage now. How could we possibly manage then? I am being realistic when I think like this. I hurt her later by hanging on now. This is my brain at work. Don't take it personal anyone. There is no agenda at work here. This is a product of where we are at this time. This is going to be a wretched couple of months.
Hopefully writing it out will help. I feel like I cant write. That more shit will ensue. Coward. That I don't like. How much more alone could I get? Rather funny and pathetic if you think about it cause I am and have been operating with an entirely pure heart. Really.
I don't spend my time drowning in thoughts like these. I am blessed to be able to transcend to a happy place most all of the time. This is what I am supposed to do, what I have to do in order to be alive tomorrow. I am quite successful at it. I love myself now. I love everything. I love you. I survive
G+ peeps: You make my heart glow
My visit with the Doctor in early December had positive results on one front. The growth on my left lung has not changed in any way. It will be two years unchanged in late April I think, should it stay the same. There seems to be no reason to think that it will change. The doctor thinks it is a scar. The doctors at the Jewish had not heard from the doctors at Notre Dame so whether or not my heart is now up to transplant standards remains unknown. I have not called for the results. The doctor and nurse emphasized remaining comfortable, stress free and as active as possible. The prognosis is grim indeed. I have gone far further than most ever could. I have a little left still. I still have not gotten my flu shot. Did not want to bother the guys who take me to the hospitals, take a taxi or beg someone. I have to figure it out myself and I just can't anymore.
Nicole made Christmas season awesome. I was so ready, I let myself go and enjoyed it immensely. It felt like my first and best Christmas ever. A couple of weeks of childhood memories was lovely. Peter joined us for Christmas dinner. Christmas season with just the two of us at home felt fine. It was not what I would have chose but there is nothing I can do about anything anymore. Breathe. We had a lovely visit from a little girl and her parents. We are still beaming from her loveliness and your thoughtfulness.
I dont think I will have a transplant. Too much lined up against me. The level of support that it would require is not there. We can't manage now. How could we possibly manage then? I am being realistic when I think like this. I hurt her later by hanging on now. This is my brain at work. Don't take it personal anyone. There is no agenda at work here. This is a product of where we are at this time. This is going to be a wretched couple of months.
Hopefully writing it out will help. I feel like I cant write. That more shit will ensue. Coward. That I don't like. How much more alone could I get? Rather funny and pathetic if you think about it cause I am and have been operating with an entirely pure heart. Really.
I don't spend my time drowning in thoughts like these. I am blessed to be able to transcend to a happy place most all of the time. This is what I am supposed to do, what I have to do in order to be alive tomorrow. I am quite successful at it. I love myself now. I love everything. I love you. I survive
G+ peeps: You make my heart glow
Monday, 24 November 2014
Christmas promised
Trying to get a breath is my whole life now. Trying to stay calm enough, unanxious enough to keep from collapsing completely. A thought can start a chain reaction of physical events that rapidly lead to panic, hyperventilation and other delightful things. So far so good. Bad thing is though that any movement now leaves me drained and on the edge of collapse. Lifting a hand without thinking and planning will do it now. I do what I can when I can.
I am close to stopped. I really can't stop.
My house is a feels a lot bigger and impossible to maintain properly now.
We see 3 people regularly in the month. They don't forget us. Our angels.
Nicole labours too hard and nobody but I cares. I can't do anything to help her. She smiles, supports me. loves me. Every day she takes on more as I fade away. I love her so much. Everyday she is more and more alone as I need time to answer a question, to recover breath to speak.
We are broke. Fairly sure I will die before we loose the house. We keep the mortgage current, so that is one fine bet! The house is for Nicole. It is enough to give her a little nest egg for her next life. Worrying about a few hundred bucks every month sucks and there are times it pisses me off and times it disappoints me.
I don't answer the phone anymore. I check voice mail once in a while.
I had a CT scan two weeks ago. I see Dr A at the Jewish on Dec 9. I may get the results from last summers echocardio done by the transplant docs and the CT results. Two possible transplant showstoppers. I don't feel very positive about my chances anymore. I suspect a lot of what I am experiencing comes from a failing heart. The symptoms are similar in a lot of ways. I have sharp pains in the chest now when I push hard.
I am happy. Love is all, it is not just words. I have endless love from Nicole. We do not cry, mourn nor spend time being sad. We laugh a lot, we play with our kitties and we ignore the brutal reality of my disease and the current state of our lives.
I still like to say I make dinner every day but there are days I simply cannot. There are days now that |I cant dress myself, where I spend the day on my recliner lungs refusing to work enough to let me push.
I will keep pushing. I will keep loving. I will keep living as long as I can fight this disease. I had to tell Nicole that the time where I can't fight, can't move is getting closer. She will let me go when we get there. I promised her I would be here for Christmas and I suspect I will be. Right now I hope she doesn't ask for a renewal of the promise.
I spend days inside my mind. Playing games. Thinking. Being free of this horrible disease. Not dwelling on the obvious. Not at all! For that I am thankful.
Wish me luck. Love.
I am close to stopped. I really can't stop.
My house is a feels a lot bigger and impossible to maintain properly now.
We see 3 people regularly in the month. They don't forget us. Our angels.
Nicole labours too hard and nobody but I cares. I can't do anything to help her. She smiles, supports me. loves me. Every day she takes on more as I fade away. I love her so much. Everyday she is more and more alone as I need time to answer a question, to recover breath to speak.
We are broke. Fairly sure I will die before we loose the house. We keep the mortgage current, so that is one fine bet! The house is for Nicole. It is enough to give her a little nest egg for her next life. Worrying about a few hundred bucks every month sucks and there are times it pisses me off and times it disappoints me.
I don't answer the phone anymore. I check voice mail once in a while.
I had a CT scan two weeks ago. I see Dr A at the Jewish on Dec 9. I may get the results from last summers echocardio done by the transplant docs and the CT results. Two possible transplant showstoppers. I don't feel very positive about my chances anymore. I suspect a lot of what I am experiencing comes from a failing heart. The symptoms are similar in a lot of ways. I have sharp pains in the chest now when I push hard.
I am happy. Love is all, it is not just words. I have endless love from Nicole. We do not cry, mourn nor spend time being sad. We laugh a lot, we play with our kitties and we ignore the brutal reality of my disease and the current state of our lives.
I still like to say I make dinner every day but there are days I simply cannot. There are days now that |I cant dress myself, where I spend the day on my recliner lungs refusing to work enough to let me push.
I will keep pushing. I will keep loving. I will keep living as long as I can fight this disease. I had to tell Nicole that the time where I can't fight, can't move is getting closer. She will let me go when we get there. I promised her I would be here for Christmas and I suspect I will be. Right now I hope she doesn't ask for a renewal of the promise.
I spend days inside my mind. Playing games. Thinking. Being free of this horrible disease. Not dwelling on the obvious. Not at all! For that I am thankful.
Wish me luck. Love.
Tuesday, 14 October 2014
Postcard from the edge
I gained a little weight finally, enough to be where I need to be. There are no signs of any pulmonary infections. I am not coughing as much and I don't get into trouble very often. I am able to manage 30 mins on the treadmill at 2 mph, most of the time without stopping for a rest. I walked to the stores with Nicole on Sunday and even walked home up the hill. It was nice but very hard. I guess I am about as on track as I could be. Still, it gets harder every day. More SOB faster, even at rest. Thoughts and emotions count too. The physical response is rather startling. Just thinking stressful stuff can do it. Anything and everything does it, constantly. It is very boring, really.
Mentally I am not so great. In terms of being sick and all that icky stuff I am ok still. We are managing fine with that. Watching Nicole have to do things because we don't get help is hard and discouraging. Not having things like a little railing on the steps after a couple of years of asking, not having the money to fix it. Somebody is going to get hurt and there is nothing I can do about it.
Everything financial is fucked up. I need counsel but am afraid to go talk to the bank for obvious reasons. We probably are ok on a balance sheet but nothing works currently. I feel entirely incapable of dealing with this stuff, it makes me sick.
Every damn word I write today I have to think of the consequences, of other people's feelings. This is bloody absurd! Why must I do this to myself? I can write about this but I can't write about that. I can tell you about this pain but not that one.
I have not told the doc about the daily prednisone, I just do it. I need to call a bunch of people today to keep things working. I probably wont. I will exercise. I will be happy. I will live.
Just write, Russell.
Mentally I am not so great. In terms of being sick and all that icky stuff I am ok still. We are managing fine with that. Watching Nicole have to do things because we don't get help is hard and discouraging. Not having things like a little railing on the steps after a couple of years of asking, not having the money to fix it. Somebody is going to get hurt and there is nothing I can do about it.
Everything financial is fucked up. I need counsel but am afraid to go talk to the bank for obvious reasons. We probably are ok on a balance sheet but nothing works currently. I feel entirely incapable of dealing with this stuff, it makes me sick.
Every damn word I write today I have to think of the consequences, of other people's feelings. This is bloody absurd! Why must I do this to myself? I can write about this but I can't write about that. I can tell you about this pain but not that one.
I have not told the doc about the daily prednisone, I just do it. I need to call a bunch of people today to keep things working. I probably wont. I will exercise. I will be happy. I will live.
Just write, Russell.
Wednesday, 1 October 2014
October my my time races on
It has been a month since I posted so its time. I have been feeling reasonably ok. I am short of breath even at rest now, but, my rehab skills are still working reasonably well. I have had no setbacks, no new infections. I take 15 mg of prednisone daily and that is keeping both my appetite and my energy up. I eat more than I have ever eaten in my life. I cant gain weight though. At least I am maintaining around 110. Not quite good enough for transplant but within ten pounds. I could still force myself to get protein supplements going, but I will hold off a bit.
Emotionally I am ok. When I focus on here and now all is well. When I dwell on things I can't control, less so.
I am at peace with the world. No ghosts. No hauntings. My course is a true one.
Nicole gets stronger, more awesome by the day. I gave her full power of attorney two weeks ago.
Lunch today with the boys.
I miss G+. I miss you peeps. I will come out of my cave now.
I go to these places in my mind and stay awhile.
I used to worry and fret about the effects of the of my slightest actions. I dont anymore.
Now is for me.
love
Emotionally I am ok. When I focus on here and now all is well. When I dwell on things I can't control, less so.
I am at peace with the world. No ghosts. No hauntings. My course is a true one.
Nicole gets stronger, more awesome by the day. I gave her full power of attorney two weeks ago.
Lunch today with the boys.
I miss G+. I miss you peeps. I will come out of my cave now.
I go to these places in my mind and stay awhile.
I used to worry and fret about the effects of the of my slightest actions. I dont anymore.
Now is for me.
love
Wednesday, 27 August 2014
Hi!
I have so much to tell you but the moments are far too much fun to be able to stop a minute and write thoughts down.
The wonder, bliss, joy does not go away. It intensifies. Nicole feeds it constantly. She sees! She understands! Such wonders, I tell you, fill my universe, every moment magnificent.
I stepped out of my circle maneuver yesterday long enough to call a notary. The experience was a pleasant surprise. Putting my affairs in order and leaving Nicole in the best position possible will only cost a few hundred dollars and be painless. The moment of my incapacitation she will have full control of our assets and my fate. She knows what to do. My world is Nicole. Everything is Nicole. If anyone out there thinks it was ever something other than Nicole, you are mad. Nicole.
I see her so clearly now. I understand her now. She made me. She showed me. By example. Nothing else With a smile. Blessed Nicole. Unconditional love. This is heaven. We are one. I thank you Ma Belle for everything!
I am stronger today than yesterday physically. I work out mornings with great joy. My body is still magnificent! I play. I stay in my tub afternoons, hours at a time, trying to think of a reason to get out, and cannot, so I refill and stay. Spoiled rotten :)
My doctors want cookies. No kidding. They fully approve. Dont even try to guess which. I eat a lot of cookies. I keep laughing and smiling and working and doing and playing and stuff. Some day soon all sick people will eat cookies. They help make it way bearable for me at least.
I love this ride to bits! I am really becoming as a child again. Why fight that? Once a man, twice a child. It is the way. I might even get a bloody restart with fresh lungs! Common now. I don't suffer, I don't have pain, I am not afraid in the slightest, I am having a blast each and everyday just movin and groovin and being. Doctors orders! Perspective baby. Get some. So much love, kitties, such stuff you would not believe. All day everyday. Right there! Oh man, every sunrise I tell ya!
I think I will make it to spring. I think my heart is ok enough. I think the cancer thing is no biggie. Thing is though, I never think about those things. Ever. I had to concentrate quite hard to formulate the idea to write it actually. No control . Butterfly.
Don't be scared! I know its hard, but don't be.
I am doing just fine. Nicole's got it best she can.
love
Thursday, 21 August 2014
Chill day
Have been taking prednisone for about two weeks now. I did one burst of ten days, tapered dose starting at 50 mg down to 5 mg then stop. The stop lasted two days and I started to feel poorly again. Superman was not in sight. So, I followed the new action plan that calls for 50 mg for five days followed by five days of 25 mg. Half way through that now. I feel okish but now I need to be very careful about pred dependency, too soon. This very well may be a silly notion cause everything is pretty much now, now. The deep long lasting infection was not killed by the avelox. It was beat up though. I have virtually no voice and burning sensation deep in my lungs. It's still there. Today I better write my nurse, advise and get council. This is no time to screw up or make guesses. I do feel alright, considering. I do not feel or think of myself as sick most of the time. The therapy and training is paying off huge. I do not exceed my capacity, unconsciously I seem to monitor this all of the time, and that lets me be blissfully unaware of my broken body.
So why do I feel so blissful lately? It is both simple and complex, but mostly simple I recon now. I made many poor choices, seemingly, in my life. I always thought that. I strove hard to understand why all of my life, an understanding that eluded me. I live an examined life, I always question myself, my motives.
I believe now that I did one thing right, one thing perfectly without ever realizing I was. It was the big one though. The really important one. The one thing you need to be to find the peace you knew at the beginning. Complete the circle.
I was true to myself. Always. Never once did I waver through my entire life. I could not. This was my saving grace.
It also ruined many things. Lack of compromise does that.
I would have screwed it up had I known. :)
I got my headaches this morning, we all do. Mostly I am over the moon with joy. I was up again today waiting for the dawn of a rainy day. Awesome.
I gained ten pounds in a week, almost back to what I have to be, around 115 to 120.
I am eating huge. Drinking huge. Moving huge.
Love....
So why do I feel so blissful lately? It is both simple and complex, but mostly simple I recon now. I made many poor choices, seemingly, in my life. I always thought that. I strove hard to understand why all of my life, an understanding that eluded me. I live an examined life, I always question myself, my motives.
I believe now that I did one thing right, one thing perfectly without ever realizing I was. It was the big one though. The really important one. The one thing you need to be to find the peace you knew at the beginning. Complete the circle.
I was true to myself. Always. Never once did I waver through my entire life. I could not. This was my saving grace.
It also ruined many things. Lack of compromise does that.
I would have screwed it up had I known. :)
I got my headaches this morning, we all do. Mostly I am over the moon with joy. I was up again today waiting for the dawn of a rainy day. Awesome.
I gained ten pounds in a week, almost back to what I have to be, around 115 to 120.
I am eating huge. Drinking huge. Moving huge.
Love....
Wednesday, 20 August 2014
Reborn
When I left the hospital last week I was in a state of shock. While I have long known that my disease could strike me down more or less any time, I was not really prepared nor expecting the meeting that Nicole, I, my Dr and care nurse had. It was blunt and it left me reeling somewhat for about a day.
Full acceptance of your impending death is not a straightforward process as I have found out over the last year or so. Being told that I have arrived at the end, and that extraordinary effort is required to sustain life for another six months is surreal and at first, terrifying. Transplant dreams. Dreams of life. The terror, the fear was short lived. Hours. I knew. I know. Nicole knows. Digested.
I woke up the next morning so early! The next one too, and all of them since. I doubt it will ever change now. I bounce out of bed. Alive! I have finally found heaven. I am in it. Here. Now. All around. This is it.
How about that, eh? I am rich beyond all measure. I have no regrets. I have made all the amends my soul requires me to make. I faced my demons. I am immensely proud of the man my life produced. There is no bullshit in the place I live in now. If I was not at peace now I would be immensely fucked. The demons would be tearing at me, waiting to consume me. Ha farking Ha.
Peace and light. No sign of anything but laughter love and the immense circle of life in my mind and outside my window. That is all there is!!
Bill dudes, go away. Harsh not my mellow I care not. Equity we got. When I get around to floating over that way I will take a look, maybe. Really :)
I feel good.
I called a couple of people today to come and visit. They both said sure, next month! Wow, eh? Whats a next month? lol
Love love love
short bursts of words and thoughts for a few days
Nicole and I are beaming in our little home looking at the meadow loving cats and each other to bits xoxoxoxoxoxo
Wednesday, 13 August 2014
Scarey Place
Yesterday was something else entirely. I went to the Jewish to see my pneumologist and my support nurse. There was a very frank discussion, all the cards on the table.
The end of this journey is far closer than I wish it was. It is all in my hands now. Do I have the will to keep going or not is the only question now.
I accept it and will try with everything I have, everything I can do. I will not stop moving and trying.
I dont know what the results were from the echocardio last month at Notre Dame. I thought I might have the results yesterday but they are not in yet. Notre Dame might or might not call me back over it. Does not really matter though. Next spring is the time I might get through that window and get new lungs. Not before.
My weight is dangerously low. We started dealing with that yesterday.
I am having some kind of exacerbation, an infection somewhere, and am on the avelox and pred now. The drs say I handle my action plan well and they loaded my scripts up again. If I am still in this state in a few days or if it gets worse I call and we try to figure out what to do.
Nicole and I made sure we are on the same page regarding resuscitation, intubation and all those unpleasant things. There is an urgency now about seeing a notary or a lawyer and give Nicole my share of the house, give her power of attorney over my affairs. Money we don't have but somebody just wont get paid.
I need to do this ASAP. Not asking for any here just writing as it is.
I had a bad nights sleep. I woke up knowing I had to write and get out of the state of mind I was visiting. I am ok. I knew everything already. Its a good thing to have it up front and easy to see. Work to live. Don't do the work and die very very quickly. Work hard and if you are lucky you might stay alive long enough for the miracle.
I am ready to fight for my life with everything I have. I am fighting.
I need a few more days I think to digest this and get refocused.
Love
Sunday, 10 August 2014
Changes
The last five or six weeks have been full of difficulties. None on their own serious. All of a sudden my lungs became far less elastic, I can feel it. This caused me to run into serious breathing difficulties virtually all the time, from any movement, any emotion.
At first I did not understand what was happening to me. I did become quite afraid for a period of weeks. Fortunately I did not get depressed, not in the slightest. I am more thankful for that than anyone will ever be able to understand.
I adapted to slowing down even more. Glacial. I never stopped moving, doing. Not one day. Doing that was the hardest thing I have ever done. I know I have to keep moving. I will die within weeks if I stop. I just know it.
We kept cheerful, laughing all the bloody time at everything. Everything.
I had to withdraw into myself. Focus all my energy on me here and now. Hence the silence.
A week or so ago I had a flash back from pulmonary rehab that I think has given me a lot more time. Enough time. I am now virtually certain I am going to be on the lung transplant list, fast tracked, sometime next spring. I have already been called back to Notre Dame.
The trick I remembered was ratings. One through ten chart. How breathless are you at this instant?
I remembered the drills. I bought in wholesale. I conditioned myself over a few weeks.
There is a tiny part of my brain that knows the number. One through five keep going. At seven, stop in place. At eight go sit down for twenty minutes. Past eight and your are fucked, and maybe on your way to the hospital in an ambulance.
Easy peasy!
Back to work. Back to being in control.
Gotcha
Doctors week this week. Feeling quite poorly today and for the first time since January I will invoke action plan and hit the prednazone. I am about one hundred pounds. Hitting the fats now.
Love everybody
At first I did not understand what was happening to me. I did become quite afraid for a period of weeks. Fortunately I did not get depressed, not in the slightest. I am more thankful for that than anyone will ever be able to understand.
I adapted to slowing down even more. Glacial. I never stopped moving, doing. Not one day. Doing that was the hardest thing I have ever done. I know I have to keep moving. I will die within weeks if I stop. I just know it.
We kept cheerful, laughing all the bloody time at everything. Everything.
I had to withdraw into myself. Focus all my energy on me here and now. Hence the silence.
A week or so ago I had a flash back from pulmonary rehab that I think has given me a lot more time. Enough time. I am now virtually certain I am going to be on the lung transplant list, fast tracked, sometime next spring. I have already been called back to Notre Dame.
The trick I remembered was ratings. One through ten chart. How breathless are you at this instant?
I remembered the drills. I bought in wholesale. I conditioned myself over a few weeks.
There is a tiny part of my brain that knows the number. One through five keep going. At seven, stop in place. At eight go sit down for twenty minutes. Past eight and your are fucked, and maybe on your way to the hospital in an ambulance.
Easy peasy!
Back to work. Back to being in control.
Gotcha
Doctors week this week. Feeling quite poorly today and for the first time since January I will invoke action plan and hit the prednazone. I am about one hundred pounds. Hitting the fats now.
Love everybody
Tuesday, 8 July 2014
Is it July already?
The last couple of weeks have been eventful, full of good stuff, with a bit of bad, and, some just plain weird tossed into the mix.
The bloody disease is working hard to finish it's awful work. Today, I feel as good as I could possibly feel, and it still feels good enough to want to go on, but, I have so little capacity, so little energy, less than I ever imagined could be possible. The control I have over all expenditure of energy is quite amazing actually. The down side is optimum quality of life means do not move quickly, move slowly and methodically, do not use energy faster than it takes to recover it back. Do not try to move five feet "normally", you will be so out of breath that passing out, collapsing your lungs or having a heart attack are all real possibilities. If you moved those five feet while trying to cross a street, too bad. When your energy runs out it runs out instantly, not like in past life. It Is Instantaneous, there is no reserve. You are going down. There is being scared for no good reason and there is scared for a good reason. I avoid going out at all without support, now. Outside my home is too far to go. I cannot. It would be the most stupid thing I could possibly do.
I imagine I am having some difficulty in adjusting to the changes.
Wayne and Wilson took me out for lunch last Wed. It was great.
The Saturday before, I saw my nieces for the first time in a long time. It was lovely. They know I always love them, and I could feel that they love me and Nicole, too. There were hurtful events surrounding that visit, but, nothing to do with them. That's just the way it is, I guess.
Wayne arranged for a club mate of his to come and pick me up on Sunday so I could spend the afternoon at Pointe Claire LBC. It was nice but a bit bittersweet. I have been away for a couple of years now, there are a lot of new people I don't know and a lot of the folks I played with and against for two decades are gone. Very bittersweet indeed. Monday, yesterday, I slept and curled up on the couch with a blanket. All that activity left me wasted.
Friday last was my second visit to the lung transplant mecca, Notre Dame Hospital. I had an echocardiogram scheduled. I did not get results, but, the attending Doctor said in passing that things looked pretty good. I think she knew what she was doing. Everbody knows that a requisition from Dr. Poirier has to do with a lung transplant. So, I am hopeful, but a little more scared of the process and it becomes more concrete and more likely.
I really do not know how to deal with losing my independence. The prospect keeps me looking everywhere but where I ought to be looking.
I have neglected G+ for weeks. Ostrich syndrome. I am out of the moment.
Love.
The bloody disease is working hard to finish it's awful work. Today, I feel as good as I could possibly feel, and it still feels good enough to want to go on, but, I have so little capacity, so little energy, less than I ever imagined could be possible. The control I have over all expenditure of energy is quite amazing actually. The down side is optimum quality of life means do not move quickly, move slowly and methodically, do not use energy faster than it takes to recover it back. Do not try to move five feet "normally", you will be so out of breath that passing out, collapsing your lungs or having a heart attack are all real possibilities. If you moved those five feet while trying to cross a street, too bad. When your energy runs out it runs out instantly, not like in past life. It Is Instantaneous, there is no reserve. You are going down. There is being scared for no good reason and there is scared for a good reason. I avoid going out at all without support, now. Outside my home is too far to go. I cannot. It would be the most stupid thing I could possibly do.
I imagine I am having some difficulty in adjusting to the changes.
Wayne and Wilson took me out for lunch last Wed. It was great.
The Saturday before, I saw my nieces for the first time in a long time. It was lovely. They know I always love them, and I could feel that they love me and Nicole, too. There were hurtful events surrounding that visit, but, nothing to do with them. That's just the way it is, I guess.
Wayne arranged for a club mate of his to come and pick me up on Sunday so I could spend the afternoon at Pointe Claire LBC. It was nice but a bit bittersweet. I have been away for a couple of years now, there are a lot of new people I don't know and a lot of the folks I played with and against for two decades are gone. Very bittersweet indeed. Monday, yesterday, I slept and curled up on the couch with a blanket. All that activity left me wasted.
Friday last was my second visit to the lung transplant mecca, Notre Dame Hospital. I had an echocardiogram scheduled. I did not get results, but, the attending Doctor said in passing that things looked pretty good. I think she knew what she was doing. Everbody knows that a requisition from Dr. Poirier has to do with a lung transplant. So, I am hopeful, but a little more scared of the process and it becomes more concrete and more likely.
I really do not know how to deal with losing my independence. The prospect keeps me looking everywhere but where I ought to be looking.
I have neglected G+ for weeks. Ostrich syndrome. I am out of the moment.
Love.
Monday, 23 June 2014
The way it are today
Nicole and I quietly celebrated our 28th anniversary on Saturday. I made us a nice dinner and dessert.
Notre Dame Hospital called me last week. I am going to have an echocardiogram there on July 4th. This is probably one of the two hurdles I have to get over if I am to get the lung transplant before it is too late. The other being a CT scan next April that shows no growth on that thingie in my left lung. So far so good. With the echocardiogram, at Notre Dame the heart decision will be rendered shortly. It is or it is not strong enough. Be nice to find out. Maybe I actually will.
The last month has sucked both mentally and physically. I am weaker, less able to do things, get drained faster and more completely and it takes longer to recover. I can literally feel my lungs, deflated and spasming trying to get up again. So far they always do, sorta. This is the new normal. There is no infection. I feel somewhat angry and very alone.
Spending far too much time worrying about friends, family and my blog. I need to overcome this. I think you are supposed to die with nothing left unsaid. I hate myself, sometimes, for self censoring my very thoughts as though they were toxic.
I will get back to writing. I will find my direction. I will not die politely. Maybe the next time someone asks me "how are you", I will tell the truth.
Love
Notre Dame Hospital called me last week. I am going to have an echocardiogram there on July 4th. This is probably one of the two hurdles I have to get over if I am to get the lung transplant before it is too late. The other being a CT scan next April that shows no growth on that thingie in my left lung. So far so good. With the echocardiogram, at Notre Dame the heart decision will be rendered shortly. It is or it is not strong enough. Be nice to find out. Maybe I actually will.
The last month has sucked both mentally and physically. I am weaker, less able to do things, get drained faster and more completely and it takes longer to recover. I can literally feel my lungs, deflated and spasming trying to get up again. So far they always do, sorta. This is the new normal. There is no infection. I feel somewhat angry and very alone.
Spending far too much time worrying about friends, family and my blog. I need to overcome this. I think you are supposed to die with nothing left unsaid. I hate myself, sometimes, for self censoring my very thoughts as though they were toxic.
I will get back to writing. I will find my direction. I will not die politely. Maybe the next time someone asks me "how are you", I will tell the truth.
Love
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