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%.
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.


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 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


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.


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 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 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.

Sunday, April 5, 2009

Kicking I don't have to.

So Shawn is totally regretting his decision to wait until Monday for his D&D surgery. He can't breathe for shit and it's pretty sad.
He actually started admitting this on Friday but he felt it was too late to do anything about it and he's probably right. I don't know maybe not but anyway it's scheduled for tomorrow and tomorrow can't get here soon enough.

Funny it's only been a few months that Shawn has been breathing normally but wow the difference is crazy. I forgot how awful it is. I'm sure he has to.

I think he is especially pissed because I'm having this "problem" with the seaglass guy and he is not in any shape to do anything about it. Not that he should be messing around but he would pretty easily intimidate this guy physically. Shawn has a really mean face that says "Don't Fuck With Me"
and that is pretty much all it has ever taken. He prides himself on scaring off guys. He's fresh like that.

Well anyhoo it's one more night and then whew easy breathing again.

Wednesday, April 1, 2009


I was shocked by today's clinic appt.

I'm just going to put it out there first and then the details.

Shawn's FEV1% was fucking 35%. I almost shit. He brought the copy into the exam room where Sara Lou and I were waiting while he did his PFT's and the first thing he said was "That's probably not right, right?"

It's a 47% decrease since Feb 3rd. He was @ 65% then. I asked him how many times he took them and he said three times. I told him that it was most likely accurate. I was so shocked by it. I told Sara to go hang in the waiting room because when the doctor came in she was going to check his hernia. I wasn't lying but he certainly wasn't going to be naked.
I was afraid. I was coming unglued and I didn't want to freak her out.

I was afraid that the doctor was going to see those numbers and then come in and deliver some harsh news.

As we sat there and I looked at the numbers, I kept thinking, 'Don't freak him out Tina, Don't you dare freak him out !'

My logical mind had immediately checked out and I was running on fear and disbelief. What the hell? This isn't supposed to happen. Not to Shawn. Not to Shawn because he is a superman, my superman. My Super Transplant Man.
I thought what the fuck it's April Fools Day, of course another pseudo holiday like Valentines Day, New Years, Christmas Eve ugh.
What is with him and these special days? Every frigging one starting with transplant has been eventful.
I tried to make my head work properly...I tried to switch into logical nurse mode but I was really having a hard time. I'm sure it was only a few minutes but it felt like an eternity. I wanted so badly to soothe myself and Shawn too.

Shawn is the one who actually snapped me out of it and got my brain moving in a more productive direction. He said something to the effect of "Babe, I told you I feel like shit when I need to be opened up again, I can't breathe, this just says it on paper, but I knew I guess."

He took on the "I told you so" look and probably was thankful for the validation. He had a damn good reason for feeling short of breathe. That poor bastard.

So all his labs are excellent, his chest x-ray is clear.

The doctor comes in and they weren't shocked by his PFT's, they said it was to be expected based on the narrowing and obstruction of his airways due to the tissue sloughing off. I guess it shrinks up when they go in and debride with electricity and that is why they also dilate to help offset some of that.

He has been needing the procedure roughly every two weeks and tomorrow will be two weeks. He is scheduled to go in on Monday, the doctor offered to do it sooner but Shawn said no. She said this is not the first time they have dealt with this and that it can take many months before it is completely healed up but it's not anything to be worried about. They feel it's maneagable I guess. Probably small fries compared to some of the complications tranplant patients often experience. He is going to have PFT's done next Wed per our request. Shawn says that he feels wide open after the D&D so he wants to see his numbers. Me too.

She told him not to gain anymore weight (187lbs), no more than one beer on an occasion, wear sunblock and was otherwise very pleased with him overall. He is going to the gym on a daily basis, she was happy with that as well. He's down to 7.5mg of Prednisone and has been @ a therapeutic level with 2mg a.m. and 1mg p.m. Prograf. His WBC was a lovely 7.2 and all other labs within normal limits. So YAY for all of that good news.

So o.k. now that it's all out there, I feel better.

But man it did freak me out.