Saturday, November 28, 2009

One official year, What I remember....

So here we are one year ago today my husband stopped struggling to breathe.

In the wee hours on November 28th 2008 a strangers lungs began feeding my husbands blood oxygen , perfusing his resting body with life. Oxygen saturated blood, thoroughly saturated food.

My first post-transplant memory is of me being roused from a peaceful slumber by the sensation of my big toe being tugged on. I opened my eyes, it was Dr. Camp's face. I remember his face to be kind and with a distinct look of satisfaction on it. I remember him saying that Shawn was good, stable, he was being cleaned up and for me to wake up and he'd be back out to talk to me. There may have been more to that report but that's all I remember.

I don't think I was ever afraid. Now granted there was a wee bit of Ativan involved, on my part but really I was never afraid. I've been afraid since but not then.

Not sure if I posted or what I'm sure I notified people but I'll be damned if I can remember a single call. I was with Mac. Oh he was so wonderful, I won't ever be able to thank him enough for being with me. I love my family don't get me wrong but Mac was perfect for the job. He's huge and calm and he loves Shawn. I felt safe, calm and comforted.

Next I remember it was like three hours later when Dr. Camp came back out, he told me Shawn was sick like he should be or that's what I heard. He was stable, he was pink, he had started up after bi pass without a problem, I should expect to see a lump in the middle of his chest, because they had to pull some tissue in there to cover his wires, Shawn was so thin there. He was doing well. Shawn's old lungs lungs were a disaster and a bitch to scrape out of there. He was full of adhesion. I remember him saying that in 15 yrs they were some of the worst.

I was so happy. When they let me in to see him, I can't remember if I was with anyone I just remember how beautiful and pink he was. Oh it was the most beautiful thing to see, even now a year later when I think of how peaceful his body looked and so healthy he was glowing it brings me to tears.

I think it was a few minutes before I began to notice all of the equipment, the machines, drains, bags, tubes, IV pumps, the vent, the monitors seemed to be everywhere. Then the sounds. All of them were there but they weren't a part of my world. He looked comfortable, like he was just a healthy guy in a movie portraying a transplant recipient.

I remember them allowing him to wake up a little and then I do remember crying a little. I remember him asking me with his eyes and his hand gesture if he was done. He had restraints on. He was rolling his eyes at them. He was so funny and I was so happy he was o.k. and I was so thankful

I am so thankful.

Thursday, November 19, 2009

Get Moving!!

I was going to post but I dare not. Certain friends of mine are cracking the cyber-whip on me and I have to get packing!

Monday, November 16, 2009

Busy busy busy makes for crazy crazy crazy

Well super busy but amazingly enough feeling pretty sane too.
Shawn's big "1 Year Transplant Anniversary" party is this weekend, so excited and totally not prepared. I feel like I have to get one thing done before the other. Sara Lou's party was this past weekend and we are moving hopefully Wednesday. So once the move is under way I can focus on the party preparations for Saturday. Oh yeah and my Dad who is terminal is coming up from Virginia on Thursday.

This place will be empty except for party paraphernalia. Ought to be interesting.

Aside from that chaos I can't help thinking about how our life was just a year ago. Everything exciting was happening in November. I am so grateful.

Sunday, October 25, 2009

"Holding On"

So I've been laid up for a couple of days with a stupid sprained ankle. With all the time to sit and be forced to be still I had a hard time knowing what to do with myself. I came to realize that perhaps my mind had been sneaky and had gotten a bit busy as of late. I thought I was pretty "together" but can see that I was just busy. My head had gotten racy and wild. I wasn't aware of it because I was One; keeping my body as busy as my mind and Two; Because my head wasn't full of the usual negative crazy chatter I thought it was quiet.

Now that I was forced to make my body still...I can see my mind was running full speed ahead, not calm and zenny at all.

So I stated doing things that zone me...I started crocheting but got a bit frustrated with the crappy yarn I was using so although I enjoy it I was feeling irritated instead of calm.

So I returned to what I love....my glass. Ahhhhh how I enjoy working with it, sorting through the thousands of pieces for just the right colors, the hues, the shapes, sizes, textures, the age I love it.

I have gotten away from making "jewelery" maybe because Shawn does it, maybe because I am bored with the style and technique, maybe because I want something more. I want my glass to speak.

I have been working on larger projects, mosaics if you will. I'm not sure what you call them.
I finished a large piece that I have been working on and really love the look of it. So I decided to work on more large scale pieces and not apologize for it. Just embrace the beauty of all of those tiny pieces together.

A couple of months ago I sketched out a picture, very rough but it speaks to me. I love it. I love what it says and what it promises. I titled it immediately ..."Holding On"... there was no thinking about it. The title came as naturally as the sketch.

Weeks ago I prepared the glass sheet which was to be my canvas. I prepped it, taped it off, bumpered my sharp corners and left it to set up. Waited for when I was feeling inspired and *poof* sprained ankle and forced rest!

So last night I started actually putting the piece together, I love it. I worked on it for about 5 or 6 hours and it's form is emerging and I am in love with it.
These pieces especially one of this size take hours upon hours to complete, I'd guess a good 40-50 hours maybe more. There are thousands of tiny pieces of glass, I do not grout so the pieces have to really lock together like a puzzle, the shades, shapes have to be just right, everything works together and I think the result is wonderful.

SO last night I huddled over the glass, turning and shifting and not being able to get my ankle in a comfortable position but I didn't care..... my mind was quiet.


Friday, October 16, 2009

Boys of Summer

Ahh my all time favorite song and seems perfect for a day like today.

Here I sit at my beautiful desk looking out to the ocean and it is breathtaking. The water is rolling in tremendous easy swells, crashing in the distance against Egg Rock, the sky is just bright enough to see the hundreds of color variations in the ocean below. I love it.

I'll miss living here. I do love it. What I love more is my family. My husband stubborn and strong beyond belief, my wonderful daughter beautiful, kind, creative, expressive and so amazingly resilient. I love them so much more than any place or any thing. I could be happy with them anywhere.

So this morning I am busying myself, I have a house to clean and pack, errands to run and parties to plan. Today I am waiting to hear if we get the apartment down the street from here.

Last year this time, our lives were soooooooo very different. I hold onto the same Faith that got me through those tough times. I have Faith that God is laying things out for me, watching and loving me. So maybe we'll get this place and maybe we won't but whatever the case may be we'll be o.k.

No scratch that....we'll be living, a wonderful, happy, healthy life and we'll be in love.

Amen

Tuesday, September 29, 2009

What the ??????????

So last night at like 10:30 Shawn see's on his cell he missed a call. It's J our landlord. (Who is actually the dgtr of the owner) She tells Shawn whatever. I was sitting in the living room putting finishing touches on a seaglass mosaic and he's standing there doing alot of "what?", "why" and "when". I knew something was wrong. You could feel the change in the air. He hung up came over and delivered the news. "We have to move"
I called her right back and asked her what was going on and she said the same. She refused to give and explanation, said that it was NOT personal, strictly business. I said what business? You want more money? Nope. I said I felt like we deserved the courtesy of at least an explanation. She refused asked me to respect her families privacy. Oh fuck you.

I know that it has to be her moving back here. We never met her, she was already out in California with her parents. She is a firefighter here in Swampscott, her husband is in the service and is overseas. I just think that she is moving back and just won't say so.

What can I do? I'm devastated. Anyone who knows me knows we LOVE this place. Anyone who knows this place KNOW why.

I'm going to try very hard to make this o.k. I can't handle another big NEGATIVE in my life. I am supposed to move forward as if I chose this path.

OK. I am grateful that we have had this beautiful place to live for the past year, that Shawn has had a safe clean environment in which to recover in, we have all made good friends here and loads of good memories.

But God damn if I knew her plan was to come back in a year I never would have signed on. Grrrrr.

Ugh. I am pretty worried about Shawn today, he is DEVASTATED. There is nothing worse than seeing that look on his face.
But alas at least I am looking at a healthy pink gorgeous alive face,right?

So...right this minute I am thankful for this amazing wonderful healthy and happy year we have had. I look forward to finding someplace even more perfect!!!!!


Monday, September 21, 2009

feeling good

So here I am today feeling better. I have kicked my Wellbutrin to the curb for now along with all other prescription meds. I have returned to the basics. I'm back to good old St. Johns Wort. Today marks a full week on it and I feel oh so much better. Even with the hormonal swing of my period I've done pretty good, if I do say so myself.

My Father is sick. My brother went down to see him last week and reports back that he is weaker and even more frail looking than he was a few months ago. Peter said Dad was super short of breath and coughing alot. Deja vu perhaps. Eek. He was transfused with 3 units packed red blood cells so that should help. I'm working up my courage to call him. I have to see him soon. I hate the idea of knowing that he is sick. He is. Cancer what a fucker. Considering that he was diagnosed last October primary site lung with mets to the brain, liver, groin he is lucky to be here.
I wish he would come back home. What is he doing down there? What's going to happen when he is too sick to take care of himself?

My husband is staying with his Uncle Carl for a couple of days while his wife is away on business. Uncle Carl just had brain surgery last week to remove a tumor, he's doing great, looks a bit like a screwy baseball but amazing that he's up and around already. That poor bastard has been through two very nasty bouts with cancer of the tongue and throat already. Time for a break.

Shawn is doing awesome. not listening to me much but I guess that is nothing new.

I love the Fall my favorite season I think. November is our lucky month!!! Sara Lou and Shawn both born in November and of course his transplant on Thanksgiving. So very much to be thankful for.

Friday, September 11, 2009

Slooooow Dooooown

Well this is a super quick post to say that I had about ten full days where my head was quiet. So quiet and so happy. Then I sort of started sliding down. I'm up today, not quiet but not all bad either. I am hungry and tired and restless and disorganized. I feel fat

Monday, August 17, 2009

A me post



Well after reading some of my fellow bloggers blogs I feel like I have been slacking.

To cut myself some slack I'll say that I believe part of the problem is that I try to incorporate too many facets of my life into one blog. Is that possible? I don't know.

I get so wrapped up in my husband that I forget that sometimes it's o.k. for me to be about me.
I forget that I am a separate person. I am more than his nurse, his wife, his laundress, his cook, his lover. I am me too.

One of my fellow bloggers and fellow wife to a CF'er has two blogs. One for her CF life and one for her. I really understand why now.

So although I'm not ready to start yet another blog I'll settle for trying to balance it out.

Today it's about me.

I have been making a VERY conscious EFFORT to be more about me but I have to tell you it's fucking hard.
It's hard. Harder than you can imagine.
My head is not always kind to me, it has been my enemy as much as it has been my friend but the distraction of him also let me blame it on him.

I fell apart because of him. I fragmented into a million tiny pieces because of him. I lost myself because of him. I am the way I am because of him. Right? After-all the stress of having a constantly dying partner is enough to drive anyone crazy.

But for me it's just not true. Yes, yes, yes having that stress maybe exacerbated my own illness but my illness is my own.

Now that I think about it I really held it together pretty well all things considered. We both did.

Funny how entangled our beings became for me. He's well now but I am still struggling in my mind.
I don't spend my days crying like I used to when he was sick sick sick but I see now that my mind is still going to try and make me feel like shit and I am fighting it everyday.

I am doing things on my own and it makes me feel so proud of myself. I have spent my life afraid of so much. Afraid of being unwanted, unloved, afraid of being stolen, killed, lost. Afraid of nothing and everything all at once. Man how unkind my mind has been to me.

But how wonderful it has been as well. Two minds. Weird I never really looked at it like that but that's it. Two minds. Two minds. Hmm I think I've had an epiphany of sorts. yuck what does that mean two minds? I don't know and right this second I am choosing to tell my crappy mind to shut the fuck up. Oh it's on, man is it ever. I'm going upstairs and I am going to kick my crazy minds ass. I am going to sit at my beautiful desk, look out the window at my beautiful view, and let my creative juices flow. I am going to create something beautiful. I am going to do it without the input from my crappy mind. Here goes nothing!!!!!!!!!!!!!!!!!!!

Tuesday, August 4, 2009

Much better

Just a quick update to let anyone who reads this know that I have not killed my husband and things are beautiful once again. Yesterday we went for lunch and late last night we took a ride out to the Marblehead Lighthouse and had a long talk. He agreed that he has been a bit self-centered and is going to work on that. I agreed that my insecurity is rearing it's ugly head. I didn't budge on some things. I refuse to be treated crappy.

So today is gorgeous out, I feel awesome. All is well with my world.

Late late tonight we are heading to Buffalo to pick up the Trans Am! Even I'm getting excited. I also heard through the grapevine that there may be a jet-ski in our future. I am getting a Kayak before he gets another toy though!!!

Monday, August 3, 2009

He's changed ..........* edited a couple of hours later

I feel like Shawn and I are growing apart. There I've said it. I hate it, it breaks my heart but he's changed. I keep thinking it's an adjustment to him not "needing" me anymore but it's more than that. I'm not number one in Shawn's life anymore and neither is Sara. Shawn is number one.
When push comes to shove his happiness is what matters to him. I think he loves me but not the way he used to.
Now Shawn is pursuing his own life. He doesn't agree with me. He thinks it's not true and that Sara and I are just being overly sensitive. I am basing my feelings on what he does not what he says.

Watching Shawn be able to breathe again has been the most wonderful gift in the world. Shawn being able to be a regular guy in so many ways makes me happier than you could ever know. I love that he can DO everything now, shoot the shit, play ball, ride his bike, go on outings with his buddies, talk shop or whatever the hell they talk about but ugh.

I tell people that we have done more this summer than we have done in years and it is totally true, we are making up for stolen time. Unfortunately Shawn is also trying to cram years worth of missed out guy stuff into months. I have been totally supportive in him going out with the guys but he's gone overboard. At every opportunity he takes off on his bike to go for rides, he spent the day in Laconia during bike week, he goes to more fucking car shows with the guys than I ever knew existed, he hangs out at his buddies shop everyday. He tells me he's working on his truck and I know he does do work on it. He's been able to do alot of repair work to his truck there that would have cost us a fortune if he had to send it out. I also know that alot of the time he spends down there is just getting away from us.

Everything sort of came to a head over the weekend. Friday afternoon he called to tell me he was at the shop working on his truck which was fine. I don't call him or nag him. He came home 5 hrs later hammered. Apparently someone who runs a "casino night" outfit brought over a poker table, chips, cards etc along with two beer balls (whatever the hell that is). I was a upset that he had been gone, I was upset that he never called to say "Look, the guys are playing some cards, it's Friday night do you mind if I hang out?" That's all I needed. I would have felt like he took me into consideration, I would have without a doubt said yes. But he didn't as far as I knew he was "working on the truck". Sat morning he took off to a car show with his friend, D. Sara and I went out for breakfast, then we picked up D's daughter and I dropped them both off at a birthday party. Mind you if I had not offered to take his dgtr to the party he would not have been able to go to the car show. So even though I was pissed about Friday night I still wanted him to go. I didn't want to hold him back. He went. We had a clambake to go to at 6. The guys were running late. D agreed to pick up the girls and the drop them off here to hang out. Which he did. Probably more to get Shawn out of any hot water than to do me a favor. We went to the clambake, didn't really hang out together, went our seperate ways mingling. Which I didn't mind. I don't need him to hold my hand, I felt good, I knew a lot of the people there so it was not a problem. At some point he mentioned that there was yet another car show he wanted to go to with D but it was Sunday morning. He said they would be going early and that it would not be a problem. (Mind you this was a show that I had looked up on the net months ago but at that time he blew it off) Then we came home to a block party. Again we sort of did our own thing but it was fine, everyone had a good time even though the cops were there five times for noise issues. There was a live band.
I chatted with everyone, had God only knows how many Margaritas and Shawn put me to bed at the end of the night. It was a good night.

Sunday was my Nana's 88th birthday we were supposed to drive up to NH to celebrate and be there by 2. Shawn woke up and said he was going to the show with D, now this was at maybe 9ish. I said I didn't think he would have enough time, he said he did and promised to be home by 12 so we could leave for NH by 1. Well at 12 he called Sara Lou to tell her he was on his way home. I waited until 1:30 and left for NH.

He said they got there late and he wanted to walk through and see everything and then they ran into a couple of guys and got to chatting. He says he left the show at 12:30 but ran into traffic on the way home.

Not that he had lost track of time. He just didn't give a fuck. He was enjoying himself and that was that. Fuck you Tina


*edit* Maybe I'm wrong. I hope I am wrong. Regardless of whether I am right or wrong I love him. I love him with all of my heart and soul. I don't want this to get out of hand. I want to find the balance and I'm hoping that Shawn does too. I'm hurt, I'm confused and most of all right now I'm tired. I know when I am tired I don't think as clearly as I should so I'm going off to bed.

On a happy note I called my pharm and asked her to call me in some Ativan. I'm smoking butts secretly and it's gross and stinky, and bad for me, not to mention expensive. Thankfully this morning I will pick up my script. Well I'm thinking my husband will be waiting in the Walgreens parking lot for the doors to open. Ugh


P.S. I am aware that I am sending Shawn mixed messages and I'm hoping we can work this out. God I love that man.

P.P.S. I REALLY think that this sort of shift in the realtionship should be addressed or at least mentioned in the pre-transplant support groups. WTF I have been blindsided by it.

Tuesday, July 28, 2009

Getting it together....trying to

Mental health check. Still having a really hard time staying focused at all. Agitation sometimes getting the best of me. I tried a new med, blah. Definitely exacerbated symptoms. Back to the drawing board. I had a very productive and destructive manic phase. Unfortunately even my swings are so sudden and frequent I can't take full advantage of the tiny window of good energy. Grrr.

Life goes on. During my upswing I spent more than I should have and blew our budget for the month. Shawn is none too happy. I even bounced a check!!!! We have so much going on too. Really we've been so active socially I'm feeling a little burnt out. We went out last Fri to a cook out, Saturday our niece slept over, Sunday we had Shawn's brother and his wife over for some nice beach time and Sunday evening we had company again. This weekend Sara has a birthday party from 2-5, then we have a clambake that is running from 5-10, we also have a block party that same night that is running 6-11. Sunday is my Nana's 88th birthday so we'll be going up to NH. Wednesday we are leaving for Buffalo to meet up with our friends who are from Florida but will be in NY for a family wedding. The third week of August I think we are going to Virginia to visit my Dad and do some camping. Crazy busy.

I'm trying to get my seaglass out and about. I keep creating things and my home is being overrun. I'm learning new techniques and really enjoy just working with my hands. The glass is so tactile I love it. I'm very pleased with the feedback I have been getting.

Shawn is doing great, feels good is getting plenty of fresh air and exercise. Sara and I really take advantage of living on a beach. Almost everyday we meander over at some point and take a dip. The two of us in our noodle chairs just floating and chatting. It's the best.






Wednesday, July 8, 2009

I've accomplished something

OK so yesterday I had a kick ass day and completed two pendants that I have been working on. Well maybe "working on" isn't exactly accurate, more like agonizing over. Sometimes I find a piece of sea-pottery that just calls to me and then I have to decide what to do with it, usually it sits in my "special" tray and I look at it, stare at it and wait for something to inspire me. Well yesterday it came to me. The first piece is for someone very special and someone very special to her commissioned it. I will be making a coordinating piece for "him" as well. I am very excited to send him a picture of it, hope he approves and likes it. If not it's alright because frankly I love it and would really like to keep it for myself, Muwahahhaha

The second piece I call "Old Souls" the sea-pottery is very old, well over 100yrs and I love love love the colors, the haggard used look of it and the pattern, the small wheel to me represents the idea of a second chance, always a new day, a circle of time.

Both pieces are done with Sterling Silver. Actually not my favorite metal because it tarnishes. With a bit of care it stays shiny and brand new looking.

I threw these shots in because I think it's difficult to judge the scale unless you see it on a body. Most artisans will provide the dimensions of a piece but I can never wrap my mind around it unless I actually see it on a body.


Wednesday, July 1, 2009

I want a new drug, I got one.

Alright now that I dicked around with the font for ten minutes and still haven't got the one I wanted I have a couple of things to get down here in my ever faithful blog.
.
So yeah the title is "I want a new drug" for all of you whipper snappers it's the title of a "Huey Lewis and The News" song. Yikes Huey Lewis what a name. Ah the 80's so good and so bad, but I digress.
(surprise)

Well I have been having a hard time pulling myself together for the last couple of months. Yes I have good minutes, hours but rarely whole days and it is frustrating to me because I feel like it holds me down. It's alot more than being able to get and keep my shit together. It's the constant banter in my mind that is the most difficult to deal with. A constant barrage of intrusive thoughts, mostly negative in one way or another and always focused on me and my perceived shortcomings.
I was going to try and list some of the stuff racing in my head but when I started to listen to the shit it got so loud and frenzied that I couldn't pull things apart. Everything jumbled together in one big spinning mass of fragments. So forget it.

The point was that I really was beginning to resent my own mind and I wanted to be free from it for just a bit, just a little break, just a little quiet. Now there are many drugs that will do that for me but most are eventually counter productive. Short term fantastic but no good for everyday life. I can't go around ripping rails or tweaked all of the time. I suppose I could but I've been there, not only is it expensive but dangerous and not the example I want to set either.

I already feel guilty that I have to be on meds to begin with. I feel like I am sending the message that there is always a pill for every occasion. Well anyhoo I finally went to see my pharmacologist (who I hate, not really her but what she represents to me) and we started a new med. Ugh I hate mood stabilizers, I feel like they are for the weakest of the weak and the most cuckoo. Shame on me for being a mental illness snob.
I've been on them in the past, I stopped my previous one in January after determining I was cured. After-all now that Shawn has his new lungs I should be better too, right.


O.K. so here's the gig. I am determined. This morning I got up, took my meds and took my dog for a walk (I bought a designated walking outfit yesterday because 'what to wear' is a huge roadblock for me). It's 2 p.m. I have not eaten yet but I will.


Rambling I know but sometimes these posts are just my thinking out loud and not nessesarily with an audience in mind.


It's raining, blah

Friday, June 26, 2009

Thanks Ladies!

Thanks for the positive reinforcement. I doubt myself all of the time, I am always wondering "Am I crazy?" "Am I overreacting? " "Am I irrational, in denial, foolish and naive?"
Part of who I am is a jumble of diagnosis, mood disorder, bi-polar, ADHD, and some other crap so o.k. I accept that sometimes the way I conduct my life doesn't make sense to other people but it works. It works for us right now.

I am trying to re-gain my confidence, I am desperate for stability in our lives.

Living for so long in a constant state of crisis has left me shellshocked somewhat.
But I think in a good way. Everything is stripped away from you, everything just falls away. Well at least it did for us. Nothing but loving each other was important anymore.
We lost everything that we had worked VERY hard for.
I am so much happier for it and sometimes people don't understand how we can be happy. Satisfied with what we have. I feel like we have everything. I don't mind living in a more stripped down manner.

Mostly I want to be carefree. I want to hang on to the "knowing what is really important in life" feeling that I think is part of these life and death struggles with chronic illness.

I don't care if people think we are silly or that I am "out there". I do and I don't. Mostly I don't.

I think we can live like we are. I think that I will be successful in my venture, I believe that Shawn will be alright, I believe we will be able to pay our bills and live in a comfortable way.

So yup, fuck her and everybody else that hates happiness. Fuck'em.

Thanks ladies. Thanks for accepting me for who I am, for being so very supportive and for being honest. I can't imagine how we lived without you all. I guess we were alone and now we are not.
Thank God

Thursday, June 25, 2009

A Debbie Downer but I don't give a shit I'm grateful as hell.

This first part is just a venting session folks so take it with a grain of salt.

Ugh I go crazy over this same thing over and over again and I don't know why the hell I do it to myself. A real glutton for punishment. (On a side note my mother told me that the definition of insanity is doing the same thing and expecting different results)

Tonight Shawn, one of my girlfriends and I took a ride up to this little shop in NH.
She sucks the fucking life out of me. Seriously. A vampire that sucks the life out of you not with her teeth but with her tongue. Although with her, it's not intentional but the result is the same. Her whole vibe reverberates with negativity. Everything that you say she knocks. Like those pigs that turn everything you say into something dirty, she turns everything negative. I can't handle it. Shawn comes with me because he knows she really drags me down. He lightens things up, he acts like a buffer or sometimes a referee.

So you might be saying well why do you continue to hang out with her?

I don't know. I like her in a lot of ways, she is compassionate and sensitive but likes to come off like she's hard and tough. I don't get it. She is loyal, she is a lot of fun for the most part, she's adventurous and always up to try new places or things. Here's the downer part...she belittles everything that I do, she is constantly telling me how I should handle every situation in my life and how she knows better than I. Mind you she has never been married or even in a long term committed relationship, she has no children, owns her own home and lives with her dog. She has never even dealt with having a room mate.
I have a degree in Early Childhood Education, psychology and nursing. I ran a very successful and lucrative home childcare and preschool program, prior to my nursing career, I do have a wonderful confident child, I have a very happy and solid marriage. I think I know what I'm doing.
I am very careful to never give her advice even when she seemingly asks for it, no way. No way I have learned that over the eight years I have known her.
She dismisses everything that we are doing "Why are you doing that? You should be doing it this way. You should say this. You should give up your dreams because they are stupid, you are too naive. That will never work. " and on many occasions she told me that I was a fool for thinking Shawn was going to make it. Even if she believed he was going to die, why would that be important to impress upon me at that time in our lives. Did she think it was helpful? She always brought it up.." You should remarry, he'd want that. Well you are going to have to get used to doing these things for yourself. I hope you are preparing Sara" and blah blah blah. I so wanted to tell her to shut the fuck up and get out of my house!

Everything negative negative negative. negative malicious gossip ugh.
I am no saint believe me but oh my God I do not put anybody down. I would never poo-poo someones plans or dreams.
People do succeed, people do have happy honest marriages, it's not so unbelievable. Yet she refuses to. She wants to believe that happiness and true love are nothing but fantasy.

Alright that was quasi-therapeutic. I got that off my chest, I'm not looking for answers really but I'll try to remember to bring it up with my shrink.

Part Two------I don't give a shit I am grateful as hell !!

My life is good. It is. It's been hard and some times things were really fucked up for us but we always loved each other and we always laughed and we made love and we got through it. We are here on the other side.
Our family made it through intact and in love. I am so grateful and amazed by the events of the last almost seven months. Our life took such a drastic change in direction, everything changed for the better. Thank God.
Well Shawn's out for a ride and I am out on my deck typing away listening to the sound of the waves rolling in and enjoying the cool salty breeze on this warm gorgeous night. I am so grateful.
Seven months ago we were in the depths of despair. I could not see the light at the end of the tunnel. Yet here I am.
So fuck her. Fuck her I am happy, I am blessed, I do have a wonderful life, I have a wonderful daughter, MY HUSBAND IS ALIVE.

If this is fantasy land then I'm staying.

Wednesday, June 24, 2009

Not Motivated *edited a couple hours later @ 3.49*




Ack this weather is the pits. I should be making jewelery and instead I am doing everything but. I threw on laundry, cleaned up the kitchen, washed the floors, changed clothes 4 times, shoes twice, curled hair (even though I knew it would frizz up the second I walked outside), brought in the trash barrels, took a short walk, caught up on some blogs, FB and e-mails and here I am blogging. Ugh.

I have the most horrific inferiority complex. I am petrified of rejection. I can love love love a piece I've created and then I'll look at it and think what if someone doesn't like it? What if one person in the whole wide world thinks it sucks?

I know that this is an irrational way of thinking but it is an obsession of mine.

The sick feeling that I get when I sense someones dislike for something I have put my heart into is nauseating. It's ridiculous I know but it doesn't stop it from being real.

I can have a hundred positive reactions but it's that one negative that will cause it all to come crashing down. Makes me nuts, I wish I was not this way but I am.

I instantly feel horrible about everything, I feel disgusted with my body, I feel unattractive, I feel inferior in every sense of the word.

I think I am good at this new craft of mine. I think that the jewelery that I create is beautiful, simple, organic, and magical.

I wonder about each piece of seaglass or seapottery that I find, where has it been, how many hands have held this piece, how many conversations has it been privy to, how did it end up in the sea and how long has it been there?

Some pieces I find I'll keep them in my pocket and rub them throughout the day. They have such a wonderful smoothness to them and yet they are textured in this beautiful rugged manner.

Well Shawn's home and he's wondering why I won't let him read my post. He's not pushing it now but I bet he'll take a peek later on. He thinks my mental health is his business....he's got some nerve.


Edit @3:49 p.m.: I added three photos of a piece that i made yesterday. I love it, it's thick and perfectly rounded and smooth. I actually carried this piece of seaglass around in my pocket for months. Slipping my hand in and being able to rub and flip that piece around was very soothing. I think it helps to keep me in the present tense, the "Now". I bet there is a name for it. Anyway I am going to hate parting with this one, but God help me if I put anymore in my "my collection" box Shawn's going to kill me. I know me and I'll hold on to it for as long as I can consequences be damned !



Grateful - NY meet-up





I have so much to say about this past WE but somehow my mind is not spitting out the words to describe it.

I'll say this...I would do it again in a heartbeat! Everything was perfect, the ride, the hotel, the food and of course the people. We laughed and exchanged stories until we were exhausted. We took lots of pictures and I think they'll speak for themselves.

Monday, June 15, 2009

( lost in draft ) A very wecome lull in our lives

It is welcome in so many ways. Shawn is so healthy right now I am almost afraid to say it out loud. His last trip to the OR was May 18th OR infection @ site, admitted and treated with IV antibiotics. OR and discharged home five days later on Friday the 22nd.

He went back in on Wed the 27th for the Nissan procedure (tightens up the base of esophagus to stop any "heartburn" or reflux from getting into his lungs)

I drove down to Virginia on Friday the 29th.

Shawn was discharged home on Saturday the 30th.

I came home on June 1st.
Wednesday the 3rd Sara Lou went to DC with her school, returned on the 5th.

Friday June 11th Shawn had follow up with Dr. W, surgeon. Everything went really well, he has had none of the tightness he feels when needing to be dilated. We were keeping our fingers crossed.


Tuesday, June 9, 2009

Trip to Virginia and the new Caddie

Sooooo.... the trip was great. Luray where my Father lives is gorgeous, we visited the Luray Caverns and drove along Skyline Drive. I took a ton of photos, couldn't help myself.
The time we spent with my Dad was so much better than I initially expected. He was great, looked good, thinner and older, but positive, pleasant and his energy level was surprisingly pretty high. He proudly introduced us to his friends and neighbors. He was calm and just all around had a good vibe going.

I couldn't help but thinking that the cancer had taken the bitterness out of him.

My Brother and I both remarked that he had really mellowed out. I kept saying that he seemed like he had taken a couple of hits of pot. He was clearheaded enough but mellow. After I got home it occured to me that dah he was high. He was taking 5mg of Marinol twice a day, muwahahahahaha. It really brought out the best in my Dad.

My Dad bought a 1987 Cadillac a few years back and had been working on it. The car is a beauty, a Coupe DeVille fully loaded and in mint condition, a real "creampuff" as my Dad calls it. He gave it to me. I love it!!!

Since streamlining our finances I have been driving an old Jeep. I actually love it but it's been crapping out. I don't mind putting the money out for repairs but it is a hoopty in general. So the Caddy is unbelievable and a huge Blessing.


On the Shawn front..he is doing really well. Still on pureed foods but no pain, no reflux and even more important NO constriction in his airways ! He has been requiring dilitation every two weeks since February and yesterday was three weeks and he still feels open!!!

Yayyyyy.

Saturday, June 6, 2009

Still Good....whoa

So Shawn had his surgery last Wednesday. Everything went very well. They checked his hook-up sites and they were open and healthy looking. Unfortunately they kept him until Saturday so I had to make the trek to Virginia to see my Dad without him. My Father and I had been estranged for many years and have only been on speaking terms for the last year an a half. Last Feb he came up to help me remodel the kitchen during one of Shawn's month long hospital stays. It was an opportunity for us to kind of get to know each other again. Almost 15 years of nastiness between the two of us, I became a wife and mother in that time period. He wasn't there.

This past October he was diagnosed with Cancer. Primary site is lung with mets to brain, liver, and lymph. He is being treated at "The Cancer Centers of America" and I have to say I am extremely impressed with the care he is receiving. Frankly when I heard his diagnosis I didn't expect him to survive the holidays. He is doing great, here nearly eight months later.

I had considerable anxiety with respect to seeing him. I felt like he was back in my life and now he's dying. I didn't want to see him sick. My Father was always very muscular, very fit. He has always been my Fonzie. I know what cancer looks like. I am a nurse and I did not want to see my Dad ravished by it.

I bucked up. I accepted that this was how the trip was going to go. Me without my husband for support, me on my own. Shawn spares me from most difficult experiences. When there is something that is uncomfortable for me, he is my cushion. He helps me through things, sometimes just holding my hand, sometimes fighting for me. He has always been my "make this go away". I made up my mind that everything was going to be great. I imagined my trip as fun and full of adventure, happiness and nature.

My brother and I drove down together with his daughter 7 and Sara Lou 13. We left Friday night 7:30 p.m. the girls were sleeping by 10pm and Peter and I enjoyed the ride. We stopped when we needed to, no pressure. We talked about growing up, all of the camping we did as a family, the injuries sustained, the traveling. We talked about our Dad. My brother shared that he too was sort of frightened seeing Dad sick. I think through all of the chatting was very cathartic for the both of us. We arrived in Virginia around 5:30 a.m. feeling peaceful.

To be cont'd....

Tuesday, May 26, 2009

Great Weekend

This weekend has been really really nice. Shawn was discharged home on Friday following his bronch. Everything looked great and he was still open, infection resolving and no signs of rejection.
So late Friday afternoon I took my husband home !!!

Friday night we went out for a ride, met up with some friends, and had dinner. When we got home, Shawn's surgeon called. I didn't get to speak to him after the bronch, it was the first time and it left me fairly unsettled. I was so relieved to hear from him. His voice is very soothing, my own personal valium.

Saturday was another great day, I felt creative and was productive. Shawn slept in until 2 in the afternoon, well deserved rest after a week in the hospital. In the afternoon I met my dear friends and neighbors for a walk on the beach.
Saturday night we went to a party and that was a really good time too. Just shooting the shit, laughing, trading stories, enjoying some good music, good drinks and good friends. The ride home was sweet and romantic.

Sunday I slept in and that afternoon we all went to a barbecue.

This morning we all got up and went out for breakfast. Went for a ride on the bike and then Shawn and Sara went out together. While they were out I completed another seaglass and seapottery piece, while sitting on my deck with the gorgeous sunshine beating down on me.

When they got home we sat together and had dinner.

Life is so good. This Wednesday is Shawn's official six month transplant anniversary. I am happily surprised everyday with the simplicity and the complexity of our lives.
I am so grateful for everyday. I am grateful to Shawn's Team and so very grateful to his donor.

Friday, May 22, 2009

Update

Shawn spoke with the doc this morning, they have scheduled his fundoplication for next Wed. so if all goes well with today's surgery they may discharge him sat and then readmit him on Wed. So what do they call that WE furlough.
I'll have to go to Virginia without him. Wah

Wednesday, May 20, 2009

Good News and video clip

Tina is celebrating Good News with Shawn and Sara at B&W!!! No rejection !!!!! No pneumonia !!!!! he is being treated with IV antibiotics for an infection @ hook-up site R side. No infection noted in L side. CT scan is scheduled, trip to OR on Friday to determine what is causing the restriction/decrease in FEV1%.



I was lazy and wanted to get this up quick so I just copied my FB status.

His FEV1% was 28%. So weird.
Oh this is pretty cool. Shawn bought me a new camera for my birthday and it takes video, I was goofing around and taped this. Hee hee it's funny. Note he is sucking in his gut because he thought I was taking a picture not video!!!!

video

Tuesday, May 19, 2009

He's in the clink

Crap. Long story and right now is probably not the best time for me to try and get it all down but here is the basics.

He went in for sched dilitation and biopsy, his R side had pus in it and was super restricted. They opened him up and cleaned him out but are keeping him for a few days of IV abx. The restriction kept him from clearing secretions and they pooled and festered yum.

Rule #1 Don't mess with your Transplant Team

Shawn got a good ass kicking from several members.

I felt like crawling under the bed. I should have insisted that he went in Friday night. It was just weird timing. He had pre-op on Friday, they did a chest x-ray, I kind of assumed that if there was anything on it they would have notified us but no. I'm not sure if there was anything there on the x-ray or not, I'll have to clarify that.

Man I am pooped out, I feel like shit. I hate leaving the hospital alone. I hate it. I know that Shawn is where he needs to be, believe me and I am grateful that he has such a great team but I miss him.
It's 4:30 and I just miss him. This is the shit that reminds me that he is not o.k.
When he feels good, even when he is going in every two weeks to be opened up it feels alright. Like he is going to have his braces tightened or something, it doesn't feel scary. In fact I am comforted by the fact that they are always peeking into those beautiful new lungs of his.

I want to live in the state of semi-denial. I like it there.

he

Tuesday, May 12, 2009

F'ing Beach nut-bag!

Grrrr. O.K. well I'll probably post more about this later because after catching up on everyone else's blog I realize that I am finally getting sleepy and it is 3:47 a.m. so that is a good thing.

So the moon is full and when that happens the tides are super high and super low and when that happens the seaglass is abundant and when that happens Tina is a happy camper!

Early this morning 7ish the tide was out and I could see a stupid guy down there with his stupid baggie and I wanted to throw a rock at him or at least hope that a seagull would poop on him, because I wanted to go down there. I knew that I couldn't because Shawn was going to be out all morning and I did not want to take the chance of running into "C". No spank you.

That guy stayed down there until the tide came in.....I knew it wasn't "C" (I have binoculars mwahahahaha)

(wow, side note...the birds just started singing...soooo loudly that I can hear them with all of the windows closed. No wonder I usually wake up every morning at this ungodly hour...time for a white noise machine 3:54 a.m.)

So anyway I didn't get to go down then but made Shawn promise me that later 6ish when the tide was out he would go down with me.

Shawn and Sara were out together when the tide went out this afternoon and MAN I wanted to go down in the worst way but I didn't. I didn't go because I was petrified that I was going to run into "C" (the fullmoon and corresponding tides really bring out the beachcombers).


I worked on a project most of the day and stared at the beach....ahhh imagining the treasures I might find and thanking God for our beautiful home.

Shawn comes home and I am chopping at the bit to go over. He's a doll and doesn't make me feel like I am being a pain in the ass even though I know he was headed for the couch. He collars Jake and away we go.

You know I didn't feel right from the moment we got there. The coast was clear so to speak, no sign of "C" but I couldn't get into my zone, my eyes couldn't focus on the glass, I was feeling frustrated and distracted. I never feel that way on the beach when I am with Shawn and of course never ever before the stalker crap started.

I look way down the beach ( WAY down, like easily 600yds away) and I see this guy ( my eyes are bad ) the clothing doesn't look like "C", but the way he moved looked like him. I scurried back toward my end where Shawn was talking to another guy with his dogs. I felt safer, so moved down toward the water but right below Shawn.

I am telling you I dropped my eyes down to the sand for what seemed like 5 seconds and when I picked my head up he was there.

He was maybe 15 ft away from me and moving very quickly, big grin in his face, saying something about me never getting enough and never being satisfied ( I'm assuming he was making reference to the seaglass but it sounded weird) I nearly had a heart attack. I totally froze. All of the scenarios that I had rehearsed in my head and all of the advice from my therapist, the police and my friends went right out the window.

Shawn was there in front of me, between "C" and I before I realized anyone else was moving.
"C" stopped short and said something like "How are you doing?"
Shawn said something to "C" and sort of put his arm out for me to move behind him because that mother fucker was actually circling my husband to get to me. I don't know what else was said I swear to God it was like I fell asleep or something. The next thing I knew we were already up the stairs and Shawn was yanking on my arm because I think I nearly walked into traffic.

I think Shawn called the police, I don't know we'll talk about it today I'm sure. I cooked dinner and went to bed. All of the air had been let out of me, I felt flat and I just wanted to go to sleep.

When Shawn came up to bed, I told him that I was thankful he was with me. He told me not to think about it right then and to go to sleep. He said so sweetly "You're safe, sleep Baby" and so I did until of course around 1 a.m.

I woke up pissed at myself for forgetting everything I had planned on doing and saying. I also realize that I really need to do something. Take a self defense class or shatever but I can not be afraid like this, it's awful.

Friday, May 8, 2009

Supplies have arrived!!!


I have been waiting for some supplies to arrive for my jewelery and yesterday there on my doorstep was the little box!
Drill bits which are soooo tiny, some leather cording, and my beautiful sterling silver wire at last.
Shawn also picked me up a bottle of my glue that I use for mandalas so I am good to go.



This piece which is a pottery shard is going to be used in a piece for a friend of mine. I love the color, which is pretty uncommon and the intricacy of the design. So delicate looking but clearly has withstood the test of time being tossed around in the ocean for God knows how long. I have not found a similar piece.

I think she will really like it, hopefully she'll love it!






So anyhoo it's a gorgeous day outside, and I'll be hitting the beach soon. I have not seen my "stalker, C" since my husband went to the Police so I'm hoping he won't be a problem. Plus now that the weather is warming up there is usually at least a couple of people on the beach, walking or playing with their dogs.
Honestly I feel best when Shawn is down there with me. I'm petrified of getting zoned out looking for seaglass and having 'C' catch me by surprise. I've gotten into the habit of keeping a lg rock in my seaglass bag ( which is a cotton drawstring sack), I figure it's easy to swing and control. Plus I wouldn't have to fumble around for it and it's not an additional thing to carry.
I always have my cell phone and whistle too.

Enjoy the Day!!!

Tuesday, May 5, 2009





So Here is Shawn pre-op, hanging out being a very patient patient, then post-op clearly aggravated with me for taking his picture and finally the monitor that reveals those beautiful numbers that make my heart soar. Heart Rate of 77 (norm is 60-90),
Oxygen saturation 98%, 98%, 98% !!!!!
I see those numbers and it always amazes me. 98%.
Pre-transplant, the first time I ever saw an O2 sat on him was back in Feb of 2000 when he was asymptomatic but first diagnosed and he was 92%.
At his worst, he would dip into the 70's with mild exertion.
Here he is with those wonderful new lungs and they are giving him an O2 sat of 98% and that is fresh out of anesthesia.

I spoke to Dr.C (or "Phillip" as he informed me he would like to be addressed as) post-op and the lungs look great. Apparently the R side needed to be dilated, the L was open there was no plugging, no signs of rejection.
He didn't biopsy for rejection, he feels that the FEV1 drop is most likely due to the restriction.
I can't lie I was a little surprised when he said he hadn't biopsied but I have to trust that he knows his shit and I do trust his judgment.

(Camp has a very special place in my heart, how can he not? But that's another post, because he is an exceptional man, unlike any other surgeon I have encountered.)

I go down the list of signs of rejection in my head pretty regularly and it's true Shawn has only the decrease in FEV1% which I know is a powerful number but I just don't feel like it is all that important anymore. Well in the capacity of clinical indicators for rejection. I think it makes perfect sense that Shawn can't get a good number with the restriction. Soooo perhaps the numbers will look better next time, but regardless of what they say I know my husband.

I know that when he comes out of the OR he can breathe freely. He goes up and down the stairs without any shortness of breath, he has no wheezing, no trapped secretions and he FEELS better.

Shawn is almost 23 weeks post-transplant.... I am so thrilled with him, with our donor, with Camp, with the whole Transplant Team, with the staff at B&W from the parking attendants and cafeteria cashiers to the schedulers and the techs. This is a wonderful and positive experience and every breathe he takes is another miracle. I'm so thankful he's better.

I'd like to show my appreciation to all of them but I'm not exactly sure how. Hmmmm?
I would be grateful for any ideas or suggestions.

We are living an amazing and Blessed life.

Sunday, May 3, 2009

Shawn and Jake



Thursday, April 30, 2009

...cause I got a peaceful easy feeling...

We are really having a good time, things are good for us.
We have this beautiful home so perfect, on this beautiful beach, that brings all of us so many things. The sheer beauty of waking up to the sounds of the birds in our trees, the oceans movement, smelling the air, the desire to want be outside engaging in it.
I'm inspired to do things I have always wanted to do but haven't.

You know when you fill out forms that ask you what your interests and hobbies are? I never knew what to put because although I had many "hobbies" in my head and I had many interests in my head but I never pursued any of them. Not really. I was too busy with other things and other people to waste time on doing something just for the pleasure of it.

My hobbies and interests have been everywhere and nowhere, everything and nothing. My hobby, my interests was trying to get along in life, trying to just move forward, trying to fit in in one school after another after another, trying to understand my own mind, trying to be a good dgtr, a good student, a 1st and 2nd time wife, a mother, a nurse. My passion was researching what I needed to do at that particular point in my life. I read books and articles and spent alot of time in libraries of all kinds. Trying to gather enough information to do something as well as I could.

Now I feel at Peace with most things in my life, I feel like I have succeeded where I need to most. I feel like I am a really good mother and wife. I feel like I was a really good Nurse. I feel like I am in a good person.

So here I am at this really weird place in my life. Somewhere I have never been before. I am at peace.
I have interests now, that are for the sheer pleasure of them.
I walk the beach, I collect seaglass, I research it, I plan and create beautiful things with it.
I cook dinner almost every night, and we sit and enjoy it together. Chit-chatting together.
I'm social, actually going out to parties, events, shows.

I went to a party over the weekend where I knew I was only going to know the hostess. I knew her through another person, but mostly on-line. We have a lot in common and she's great. I am very attracted to her vivacious personality, her adventurous and her positive attitude. She is open minded but not to a fault. We share the same passion for our children and for our spouses, for our marriages. She, unlike me, is a do'er. I want to be a do'er too.

She's nutty as a squirrel turd as my husband would say.

The point is that not very long ago I never would have gone to that party.
For a million reasons if I needed them but primarily the reason was I would be off of my turf with people I didn't know from a whole in the wall who might be cool and aloof, snobby, cliquey, stinky, crappy people. People that might make me feel unattractive, fat, unintelligent, and unwanted.

None of those things ever entered my mind until I was reflecting on the whole weekend, this morning. I can't believe I am going out and engaging with friends and strangers and not feeling the slightest bit of apprehension. How very weird.
Plus I had an awesome time, I socialized with everyone, talked with everyone, moved through the crowd with total ease, got my own drinks as neccesary, picked at pickies, even smoked a couple of cigarettes out on the balcony.
I thoroughly enjoyed my husband, talking with him, joking, watching him and of course the detoured ride home was a very good time.

So this whole rambling post is about what? I don't know. I'm feeling peaceful and I'm so thankful and I realize how much life I was missing before now.

I've arrived. I feel like I am here.

Only a Number

Yesterday Shawn had clinic. His FEV!% was down to 35%, or at least that's the result he got. Crap, crap and crap.
Everything else looks great, his x-ray looked fantastic, the doctor brought up a variety of Shawn's past x-rays for comparison on his monitor. The lungs appear to be in great shape. But that stenosis is fucking up his FEV1%.
Right?
That makes sense.

If Shawn is trying to push air through and The FEV1% is the amount you are able to push through in that 1st second, and he is trying to push it through a very narrow passageway, it makes perfect sense that that particular measurement would justifiably suck.

I was thinking about plumbing and if are using 1" rather say 2" copper as a supply you are going to a very different result. The amount of water able to flow is going to be decreased, reagrdless of the size of the water heater. His total volume nubers are good.
Anyhoo of course whether there is a resonable explanation that doesn't seem so dreadful or not it still has to be dealt with. But this seems o.k. to me.
Things can be done, mechanical things to change this.

So the Team has put this plan into action. CT scan (which Shawn had later that day)
Monday morning, Pre-Op testing, PFT's in the lab, then OR , where they will bronch him, perform dilitation, debride if neccesary, look around, tidy up, and biopsy for rejection. So far there have been no other clinical indicators to suggest rejection other than the low FEV1% so I'm not too fearful of "R" being an issue.

Ugh.

He feels good, looks awesome, he is doing everything.


*this post got off on a wild tangent so I copied it and made it into the post titled "..peaceful easy feeling.."

Wednesday, April 22, 2009


What a lovely morning it is.

The last couple of weeks I have been struggling with a wide range of emotions, but mostly depression and agitation. It's always a huge fight in my own head when my depression rears it's head because I can't for the life of me understand why. On one side of my mind I see no reason for it, I see it as a ridiculous weakness, I see it as laziness, weakness, a figment of my own imagination. I see it as something that should be completely within my control and something I should be able to snap out of, stop being a baby etc. I do not accept it as a "chemical imbalance" or "mental illness". I see it as something I should be able to talk myself out of.

On the other side of my mind, I accept it. It's part of who I am. Whatever the cause, the fluctuation in hormones or neurotransmitters is real. Sometimes my mind does not run smoothly. Sometimes it is a washing machine that has gone off balance.

Over the years I have learned ways to help push the reset button so to speak and they work pretty well.

Anyhoo my triumph today is that although I am not sleeping in a normal pattern I was determined last night when I went to bed that I was going to have a good day today.

I went to bed at 10pm and was up at 11:39pm Ugh !!!
I was back asleep sometime after 3:49a.m. and then my dog woke me up at 5:16 a.m....oh that's a gross story..but I digress back to sleep sometime after 5:40 ish
I was awakened by Shawn at 6:30 a.m. (who was determined to be the first patient at the GI office to have his Ph probe pulled)
I fell back asleep around 7ish and then woke up myself at 8:19a.m.

I know this is all riveting but I mostly write to understand myself so sorry guys.
When I woke up I was still clinging to the "I am going to have a good day today".

I am. Maybe it's the sun is shining, maybe it's my hormone shift, maybe it's me forcing negative thoughts out of my head, forcing myself not to ruminate, whatever it is I am happy. I am having a good day and I am so thankful for it.

Shawn decided this morning that since the Red Sox game was rained out last night and rescheduled for today at noon, that he would take Sara Lou into Boston with him and see if he could score some tickets. So guess what? Yes, they are now wandering around Fenway together.
Shawn the same man who was so crapped out not five months ago is enjoying the day with Sara Lou.

I just took my delicious famous lemon poppy super duper pooper loaves out of the oven, the house smells very lemony, I'm working on a seaglass project and I have an appt with my shrink this afternoon. A very good day indeed!

Sunday, April 19, 2009

Shawn and I going for a ride



There we are headed out for a ride this morning. Yeah it was a really short ride because it was just too damn cold, brrrrrr.

Please notice I have about an inch of padding between my ass and the rear fender.

Last year we were going to get a new seat, or have additional padding upholstered into the existing seat. Then we were going to sell the bike because it was frowned upon by the Team.


They never would come out and say no bike but we got the idea and Shawn was actually accepting of that fact, but he clearly has changed his mind.

So I have the same little seat, it's a good thing I have some meat on my ass and it's also a good thing I am only 5 ft tall because otherwise my knees would be up around my ears. The pegs are high. It is actually a very comfortable position.

He wears a special mask to keep from inhaling any road goodies and the boost to his morale is well worth it.

It's funny down at the "Dew" where all the bikes hang out and Shawn used to go last year wearing his oxygen, the guys are all fascinated with the transformation.
They are very comfortable asking questions and it's nice to kind of get the word out about CF, transplant and organ donation. That's one group that should all be organ donors. Gross but as a nurse that's what we used to call guys that rode bikes, 'organ donors'.

Well Shawn is keeping his right where they are.

Life is a crazy thing.

Saturday, April 18, 2009

Spring has Sprung





A Good Day and a bad day/night..Ha!

Today was gorgeous here in Boston, absolutely beautiful, a perfect day for a ride.

Shawn was out on the bike for the entire morning, I was so happy for him. He was productive too, got some errands done and made a couple of social calls to boot.

When he got back, Shawn, Sara, Jake and I all headed over to the beach. Too sunny to stay away. Collected a few treasures and I was satisfied.

Then we headed into Boston. Shawn had his trip into the OR and everything went very well, he was out pretty quickly. The Doc said everything looked great, stretching needed but not nearly as much as last time, the lungs looked great and he would see him in 3 weeks. So I was very pleased with that as well.


O.K. so here I think is why I am up at freakin two o'clock in the morning.

My Father .......is dying and I can't even bear the thought of it. I can't bear the thought of seeing him, wasted away, eaten up by the cancer and ravaged by the "treatments".
He was diagnosed in October and I honestly didn't think he would make it through the holidays.
The primary site was lung but he had mets to his brain, liver, ?lymph nodes in his groin.

He was not symptomatic at the time of diagnosis, well he had a lump on his shoulder, they took an x-ray and well you know the rest. I advised him to enjoy himself, take what he needed for symptom relief and live the rest of his days in relative ease.
I know that sort of advice is easy to give and I don't know if I could do it, you always are going to grasp at whatever hope is there, as if # of days are all that matters.
He pursued aggressive treatment, it is a fine facility by all accounts but the result is the same.

He has been miserably ill ever since due to the side effects of the treatment, not the cancer.
My Father was always a very strong man, not the biggest but definately a tough Bastard, raised in Chelsea, poor, ignorant, joined the Navy at 17, had all of his teeth pulled 6 months later because his family couldn't afford dental care, he worked his ass off for his family and he could do just about anything.
By trade he was a plumber, he retired from the National Park Service, he was also well....anyway
he was a lot of things he was my "Fonzie". Big muscled arms in tight white t-shirts, pack of butts rolled into his sleeve, always under the car tinkering, he taught me how to change the oil and filters when I was 11. We spent countless hours together in the driveway, him on his scoot thingy under the car and me handing him tools, pumping brakes or whatever else I could do...just to be with him.

Even at 60 he was still a certified Forest Fire Fighter, he could run 5 miles with a 30lb pack, he was by all accounts in great shape. Ha.

So here I am now. We have moved into our new place, Shawn has been listed and has had his transplant, he has recovered well and is relatively stable. I have the means. I have no excuse.

I have to go see my Father. The thought fills me with dread and I can feel my chest tighten and I want to hold my breath. I don't want to cry, I don't want to hurt, I don't want to fall apart because I've finally been able to pull myself together (somewhat). Shawn is alive and thriving, that horrible weight and pain is gone from me, he is o.k. so can't I be done with this for awhile?

I feel selfish and childish. I know that everyone has to go through these things and some have many many harsh things in their lives but I just don't want it. Not now, not yet.
Of course I have no choice.
I do try and put a 'spin' on it. I have so much to be grateful for, how dare I complain, there are mothers mourning their children. At least this is the way it is supposed to happen ...parents first right?

It's the middle of the night I am tired. I am eating Breyers Black Rasberry Chocolate Chip ice cream from the container, Ugh. I gotta get some rest
Mellow Me Meds take me away.



*P.S. I haven't seen my Father since last February, when Shawn was deathly ill. He lives in Luray Virginia. We were estranged for close to ten years.
Guilt, guilt, guilt

Thursday, April 16, 2009

Good News

Shawn had an appt today actually with a second thoracic surgeon regarding a hiatal hernia he has. (wow that was a lot of H's)

Apparently some of his decrease in lung function could be attributed to reflux/micro aspirations. I don't think they found anything in particular just trying to cover their bases. Prior to transplant they did some testing and it was determined that he had only a very minor amt of reflux but I guess sometimes after surgery it can be worse...I'm guessing due to the manipulation of his guts for lack of a better word. So anyhoo he'll be going in for more GI related tests next week.
Shawn has five hernias in total so it'll be a while before he is all buttoned up.

The good news is that for whatever reason they actually did a set of PFT's and his FEV1% has increased to 50% from just 36% a week ago. Actually now that I look at the two print-outs I see that they used a slightly higher "predicted" so he is even a little better than 50%. I'm no math whiz but now I'm determined to figure it out exactly.

Well his FEV1% in liters 1.66 and today he is 2.32 so although not the big numbers I'd like to see he is still moving in the right direction!!!!

Tomorrow he has surgery again, just the dilatation this time.

Tuesday, April 14, 2009

Will the drama ever end?

O.K. so I posted something on my facebook profile because I got my feelings hurt and I got a ration of shit for it and I was asked to take it down and that was after they deleted me from their friends list. So now not only can I not vent on my own page because she will be offended but I can't vent on my own page because a mutual friend of ours might see it and tell her and she might be offended. Oh the humanity.
Really? I mean really does the world revolve around her? I'm not digging this latest development at all.
So now I have to censor myself so as not to upset her. What the fuck.

And why am I giving into this crap? This whole mess is really exhausting me and what good will come of it.
I'll always remember the things she said and she will always remember what I've said so I'm not sure what happens at this point but I have the distinctive feeling that I am the bad guy here.
Oh yeah she said she had all of her friends and family read what I wrote and what? they agree with her?
Oh man what a mess.

Monday, April 13, 2009

Friends

I feel like I broke up with a boyfriend or something. I had a terrible falling out with a very good friend of mine. I let my keyboard get the best of me and really let her know how I felt. I was not going to be manipulated and I was not going to be made to feel guilty for something I did not do.

The long and short of it is: while I was in Florida at a grocery store I called her for the recipe for Sangria, then she said "...while I have you on the phone, my sitter canceled, can you watch the kids on Fri when you come home?" (I was irritated that she was asking me this when I was on vacation in the first place) I told her that I would like to help her out but I couldn't commit because Shawn was having surgery that week and the date had not been scheduled yet.

That was that.

I did not call her or hear from her. When I got back Shawn had made plans for us to have lunch with friends, then shopping then going to dinner and to see a band Friday night. When she saw his post on FB, on Monday, she sent me an e-mail saying "Please don't cancel on me!"
I was genuinely surprised. I wrote her back saying that I wasn't canceling because I knew I had not said that I was watching her kids.

Well you can see how this got ugly.
She left me messages on my cell, for me to call her and I didn't. I didn't call because I did not want to deal with her. I knew she was goingt to try to convince me to have Shawn cancel our plans, so I could watch her kids. I knew she was clearly not prepared to take No for an answer and would do whatever she could to make me say yes.

Soooo instead of listening to her, I sent her an e-mail and I told her why I wasn't calling her back and that I know that I had not committed to watching her kids because I did not know when Shawn was having surgery.

Well I know she did find a sitter because I know she did what she had planned.

I figured she got over it but I was wrong. I left her notes and comments on her FB, friendly stuff and it wasn't until last Wed that I realized she hadn't responded to anything I had written. I wrote that I had noticed that she was ignoring me and that we had our traditional Easter Ricotta Pie and Pizza Gaina night coming up and wondering if we were not invited.

Then all hell broke loose.

She wrote me an e-mail saying that she wanted me to acknowledge that a friendship should include respect and courtesy and that was IT for me. I really ripped into her.

I am extremely articulate when I am pissed off and I held nothing back. I was honest, I didn't say anything that wasn't true and I believe that I was in the right but what does it matter now.

Ugh

Wednesday, April 8, 2009

Not #'s we were hoping for

Well I guess we expected a big jump in Shawn's FEV1% because he feels so much better since having his dilatation on Monday.

His FEV1% increased by 5% to a whopping 37% or 1.66L

His FVC did increase another 17% to an all time high of 77% or 4.31L so that was very encouraging.

Shawn is pretty bummed out over it, he was quiet all the way home. Yeah suddenly I missed the smart ass ball buster that he has been over the last few days.

Up and down, up and down, up and down. I could go for a little predictability right now.

I didn't feel like it was the right time to lecture him on using his incentive spirometer but I wanted to.

We got home and he headed off to the gym, I guess that's a good sign right? He keeps trying.
He has to go back next Wed for D&D again. Well slow and steady wins the race.

We actually ran into a guy @ clinic who had a single lung tx about a month before Shawn and he has had so many misc complications in addition to stenosis that I really felt like we couldn't complain at all. Plus he lives like two hours away from the hospital so what a bitch that has got to be.
I can't imagine what we would do if we were so far away. At least I know that if Shawn has to be inpt it's only a 20 min drive for me to see him.

So once again in perspective things are going really well, he is having a very nice recovery and our lives are certainly more stable than they have ever really been.

It will be nice though when those #'s look good.

Oh yeah I've forgiven him for the tires.

Tuesday, April 7, 2009

New Tires

Ugh Shaw has this thing about new tires.
Every truck he has always desperately needs new tires. I don't think they really need new tires I think he just likes new tires.
A month ago he was going on and on about how the Jeep desperately needed new tires and he couldn't buy three new tires to match the never used spare tire on the back, he wanted to buy four new tires and would then need to buy a fifth tire for a spare since the new ones were going to be bigger than the originals for some reason. So he was very busy on-line looking up tires and of course new wheels because the new tires would be too big for the old wheels. Mind you this Jeep is a real beat up truck, putting fancy tires and rims would be like putting a silk hat on a pig.

Well now he has a new truck. A big Dodge Ram. He got it from a friend of his, some deal was made (he didn't pay for it)I'm not sure of the details but he's thrilled because losing his pick-up and having to drive around in the Jeep was a big blow to his manhood or pride or whatever.

He said it needed some work on the exhaust and something in the front end. He had the exhaust fixed and then I thought he was dropping it off today to have the clunking in the front end fixed.
This afternoon we go to pick it up, he comes out to tell me I can go that he's all set, I asked him if they fixed it and he says yes....it needed new tires! He fucking kills me. New tires! My stupid Jeep barely stops I drive with my tippy toe, the starter grinds, you get dripped on when it rains, and the muffler is swinging and he needed new tires.

Him and his frigging new tires. So I'm a little aggravated.

I asked him what happened to my Jeep desperately needing new tires....he says that he mostly just wanted new tires to make it look better. That is a perfect example of the sneaky Shawn. Fucker.


Oh well I guess it's not a huge deal, but aggravating none-the-less.

Monday, April 6, 2009

He can breathe again....whew

Shawn getting cranky waiting in pre-op

Here he finally Konked out

This is The Fabulous Dr.Camp, the surgeon who played a HUGE role in saving my husbands life.
He is Shawn's Transplant Surgeon and we love him.


Shawn did great today and he looks, sounds and feels so much better. It really is amazing. We got home from the hospital and Shawn walked up all the steps to our place @ a good clip and was not even slightly winded.

His surgeon (Camp)said that the R side was a pin hole....my poor baby. The L side had shrunk up too but not so bad.
So he was stretched open and now feels like a million bucks.
Camp said that the lungs looked great, no plugging, no nastiness going on and no further debridement needed he's very well healed.
Shawn will have to go back in next week to have that R side stretched a bit more.

But really who could complain, not me and certainly not Shawn. A very small price to pay.

He'll be doing PFT's on Wednesday and I'm dying to see how they look.



( I hate how I can not arrange the fucking pictures on this damn thing! )


Oh P.S.
An update on Mr. Kuckoo pants my beach weirdo....So Thursday I was out all day with Shawn, we picked up Sara Lou from drama @ 5:30 and get home at 6'ish and guess what? Yup...a gift left for me on my doorstep. A very nice plank, painted, distressed and then carefully stenciled with.... 'Swampscott est.1629'. to hang on the side of my house I guess. There was a note written on the back:
" I'll be alone at Rosa's Barbershop 6:30-9:30 cleaning. Why don't you come a knockin and cheer me up. Your Friend, Craig"

Yeah, I know. I have a problem.