Thursday, 11 June 2015
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.
I will find my moment and live in it
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.
Wednesday, 3 June 2015
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.
In the moment
Sunday, 24 May 2015
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
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.
Friday, 17 April 2015
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.
I wont post this on G+ yet. Hope some friendly eyes find it.
Sunday, 8 February 2015
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.
Wednesday, 28 January 2015
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.
Monday, 26 January 2015
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........
cat pics soon G+
Tuesday, 6 January 2015
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