But at least you have a really cute coat!

I may have a really cute coat, but I'd rather not have run after a bus in heels only to be about 5 feet from the rear, flailing arms and all - only to have it leave me in its exhaust fumes. Oh well, the sentiment from the girl was pretty sincere, and yes this coat is very cute, almost three years running. I should be happy about that.

:)

Exhaustion sets deep

Of course things got worse. Of course they did!


I'm going to keep this brief because I need to get it out into the world without drowning myself in the awfulness. 


Jason goes to hospital. We leave and soon learn that my mom attempted suicide and is in the hospital. She failed. Rumors circulate of her I went out to California to help her seek help. Things went "OK". I got sick. Mom plods along in seeking help. Things slow down. Get worse. Jason goes to hospital. I go to Denver. Mom threatens to commit suicide again. I get home. Jason goes to hospital. We stay til 4AM. I get no sleep. At work.

Selfish and Dreadful

I’m at that weird stage where things are constantly stressful and I dare not say or write anything about it for fear that I might set the cosmos against me. I want to be excited that Jason feels better after this morning when he was feeling sick and was starting to cramp – better enough to go to the gym tonight – but instead I feel sick and my heart hurts in fear that we’ll end up at the hospital yet again.

I have this running “joke” (that’s not really a joke at all, but more my way of making light of all the gravity around me) with the corporate trainer that comes by monthly to check in on our fitness levels and diet. She’s “bad luck”. You see, the night before she comes to see us I have been in the hospital. Of course, it’s not the only time in the month I’m in the hospital, but it’s a strange coincidence that it has been every Tuesday prior to my Wednesday appointment for the past 9 months. I am filled with dread that this will be the case yet again. Dread, I tell you. Dread.

When I came back from Charlotte this past Thursday, I ready to hit the gym straight from the airport. I at least had the sense to try and get in touch with my husband, but no one picked up. After three tries, a co-worker picked up Jason’s phone and informed me that he went to the ER. So, instead of the gym I went directly to the hospital. Of course, there’s not much they can do at this time. They’re still going back-and-forth over removing Jason’s spleen.

That Thursday, Jason went down to the liver folks for clinic and was seen by their gastroenterologist. The GI docs all want to take out Jason’s spleen. The surgeons feel that the risks and complications are too great since there is no clear or consistent indication that this is the treatment needed. The liver people have their hands up in the air. The problem is that no one’s seen a case like J’s. So, the GI docs are taking Jason’s case to a larger, national panel of specialists to see if there are any cases to help make their case, or at least something that can give us a better indication of a different treatment since going to the ER almost weekly just won’t fly.

So, here I am, selfishly panicking over going to the ER again; selfish because it pains me to see Jason go through this. I cannot relate to the type of pain he’s going through, nor the extreme tolerance he has built up for the pain meds. I want to, but I cannot and should not. I can only be there for him. I know it’s all I can do, and yet it doesn’t feel like enough… like I’m supposed to absorb some of this pain for him. And then there are the times when I am intolerant to what is happening, or ignorant to the fact that he is in pain all damned day long. Yet he goes on, he lives his life, he jams in as much normalcy and fun as possible 

Oh, where does the time go?

Apparently, I've slipped into some timeless ether. It certainly doesn't feel like more than a week has gone by. Plus, I really thought I'd be writing more (and sleeping less).

Last week I decided to go under for a little tonsillectomy. I'd heard all the horror stories, but figured it would be for the best if I just put this little cat-and-mouse game I play with my tonsils to rest. Well, ask me this in a few weeks, because right now I'm still questioning my sanity when I signed all my waivers. This sucks!

So, it's been a week, and I'm only just now feeling like I'm back to my normal self. I'm totally dehydrated-feeling, despite drinking water what feels like all the time, and I'm only just now starting to not sleep like crazy (though I feel a pretty powerful nap coming on any minute now...). I've figured out how to eat, and sadly it includes how to hack out food that gets stuck in the area formerly known as my tonsils. 

Before I forget, I figure I may as well share some pictures taken during Jason's recent hospital stint. 

That's Jason, for those who might mistake him for a ninja...

The last is my favorite of all. :)

To spleen or not to spleen...

Jason’s still in the hospital. There was a lot of back-and-forth regarding removing J’s spleen. It’s frustrating from our end, sure, because we’d all like to have found the miracle answer and move on with our lives, but the reality is that we can’t be sure what the problem is, since it’s not always present on the left side; from time to time, he has this pain on his right, in the area of the bile ducts of his liver.

What is possible is that he may have two distinct things going on at the same time; they just happen to both be happening mid-abdomen. I’ve mentioned the cholangitis before, so I suppose that now is as good a time as any to explain the spleen thing, or at least as much as I know about it. Jason’s spleen is about 2x or more than the size of a normal male of his size and age. He has portal hypertension in the liver, which can lead to excess “stuff” backing up into his spleen. This can cause a variety of issues, but until we can determine this more definitively, the risks of removing the spleen (which, in a normal person, are big enough – just throw in J’s issues and we’re talking risky business) are too great with the possibility that the problem will continue to exist after removal.

So, we wait. We’re going to watch what happens over the next couple of weeks to couple of months. Certainly, ending up in hospitals and ERs four times in a week isn’t good, but if that’s what it takes, that’s what it takes. I am going to include more of Jason’s health issues in my own logging. Perhaps this will provide doctors with a pattern from the perspective of a 3^rd party that is always present. 

It's Official

I really can't ever brag publicly about when life returns to normalcy. I'm convinced the cosmos are listening and said "Ha! That wasn't enough? Here, take some more!!"


Actually, put into perspective, this isn't that terrible... 


Wednesday, Jason started to cramp up in the morning. Except, that it seemed to start off as back pain. We went in to the local hospital, assuming it was what they'd been talking about all along: cholangitis. They treated it as such, though he was having pain around his spleen, also. Pain killers and more pain killers... such is the story of our trips to the hospital. They sent us home, we went to Jamba Juice, came home, Jason was a tad nauseated, but came with me to my hair appointment and got his done, also. 


All night he stirred. More back pain. Then more cramping. Hard cramping. So, we did as we have been directed to do; we went to the ER. Pain killers, pain killers, pain killers. Did I mention that nothing less than Dilaudid and Fentanyl will work because Jason's tolerance is so up there? We got out early in the morning and he insisted on going to work. His work is light and he had a ride home. I went to work. Things seemed okay, though looking back, he seemed a bit agitated on and off. 


Then there was Monday.


Well, well, well... we were  back at the ER with more pain. I honestly don't even remember if I made it into work or not. Or did I meet him there later. Oh yeah, I met him there later in the afternoon. Then it started snowing. Hard. We got out, went to Target for some pharmacy and some miscellaneous food items, then home. 


Still, I was worried. By the time Wednesday rolled around, Jason was having throbbing, moving toward stabbing pain. I urged him to talk to the liver transplant team himself, and they said to come down to their hospital, since they may treat it differently. Jason tried to brave it out, but around 7:30, it became clear that things were only getting worse so we went to the ER.


The ER was PACKED. I guess the last two weeks has seen a big spike in admits and injuries. Lots of flu and colds going on out there. Please, just stay away from my husband; he doesn't need any more. Thankfully (ha!) Jason's transplant status got him out of the coughing, sniffling, sneezing waiting room pretty quickly.


We got into the room around 1AM, and I was too exhausted to come home. I kind of figured it would take as long, so I packed some clothes under the stupid guise of going to work the next day since this hospital was so close to downtown. Har, har. I got only about 2 hours of pieced-together sleep, so I wasn't much use. I stayed the day, managed my emails from the hospital room and went home that night to shower, sleep, and ready myself for another day.


It's Saturday now, and Jason is still in the hospital. I think they're going to take his spleen out, it's just a matter of when. It's just a matter of how many hospital trips does it take to get to the center of this medical tootsie pop. I'm about to head back, and will hopefully make it in time to talk with the surgeons. 


Post more later. 

... Ugh...

Something is up with my throat, and Jason is cramping up again. I'm worried that I may be giving something to him that is making him sick. My plans are to sleep in the spare bedroom until I can get this straightened out with antibiotics or something.


This week is starting out awesome. Nevermind that last week was so spectacular that I didn't even have the heart to blog about it. I want to find a rock to crawl under or a corner to hide in just so I can freak out in private.

Shocking...

It’s actually pretty hard to keep up with a blog when I have so much less to complain about. Shocking, I know.

I just finished reading a good friend’s story on Richard Simmon’s website/blog. I’m so proud of Heidi, it’s unreal. The journey she’s had to go on is both heartbreaking and inspiring, though mostly the latter. Heidi is one of the most beautiful people I’ve ever met, inside and out, and her weight was never an issue in my mind because she was a constant delight. Through a good friend, she got hooked up with Richard Simmons’s aerobic group/class called “Slimmons”. It’s changed her life. She’s lost some weight and is well on her way to a healthier and happier life. No doubt, she will have the kind of struggles that tend to plague those of us with a little or a lot of weight to lose. She said something important in her story: communication is just as important as exercising and food. She reminded me that sometimes the issues behind the weight gain are the key behind the weight loss.

So yeah, despite losing the weight I have and the fun I’ve had along the way, despite Jason doing well with his overall health, I should probably keep blogging. If nothing else, to make sure that I keep the demons in check, and to give myself a point in time to reference when things do go wonky.

I do love that this is pretty low-key right now. It’s a lot more freeing.

The Lunch Bunch

I’ve been with Alsco almost three years now. I pretty much love my job, even with its occasional heartaches, frustration, and fucked-up-iness. We all get along really well, hang out. It’s awesome.

Well, there’s been a sort of sea change around here. Now we really don’t hang out. Groups are isolated and shrinking. We don’t invite one another out. We don’t even do our formerly non-stop luncheon/potlucks. What happened?

I do know what happened, and it all started in August of 2008. We’d already had several birthdays from the time I’d started in March. When we did that we’d all “pitch in” for the birthday boy or girl’s lunches if we went out, or would all bring in food to share, birthday people excepted. Always was like that. In August of 2008, my boss and another team member had their birthdays. I took up planning the lunch, and the Call Center lead flipped out when I mentioned that his “cost” would be increased by 75 cents to cover both of the birthdays. He went on about how everyone has always carried their own weight and that the birthday people always paid for their own lunches (not true, and I know that we covered off at least two of their people’s birthdays).

So, I said “fuck it” and I and another team member covered my boss and co-worker’s lunches.

No biggie, right?

Right…

So, then lunches started to move to a bi-monthly, then quarterly affair. People started talking behind Call Center’s back because they would come and raid snacks prepared or brought by people in National Accounts, and when they’d come to potlucks, they’d bring in a head of lettuce or a few cookies when someone else would make a major investment in time and money to bring in something really hearty.

Next thing we know, we’re at this week.

So, every year, Alsco puts on a trip as a reward for those that have had high performance within the company in sales and service, and every year, those left behind at the General Office threw a pity party for ourselves, usually themed around the location where they “winners” were off to. It was always fun; we’d have music, food, and take a LONG lunch. We’re at that time of year again… so when I started going around to the usual suspects, I’d noticed that there was another potluck going on… and no one was comfortable to talk about it. In a way, I’m glad, because it helped me to not gorge myself on the bad food that’s normally there… but it still felt like bad form on their part, and they seemed ashamed as I started talking about planning our annual party. I kind of got the sense that it was just easier to invite no one outside of National Accounts than pick and choose because of hurt feelings. You can’t invite Marketing if the Call Center isn’t invited, too.  Whatever…

So, I’ve decided to say fuck it to this, too. Next Friday, instead of a pity party, if anyone wants to join me, I’ll be heading over to Sandbar or Barbacoa for my own personal pity party. Come if you wanna, don’t if you don’t. 

And, we're off!

So, I'm in the surgery waiting area. Not much to say yet, other than today got a VERY early start. It's quiet here and they haven't turned on any televisions, which is good by me. I'd prefer the peace and quiet of these moments than having too much going on around me. 


Last night was really good... except the whole not being able to sleep part. That part sucked. Jason will be kept here for observation until tomorrow morning, so I'm planning on crashing out as soon as we get the room. I even brought pajamas for the occasion. 


Jason is wearing his Gator scrub bottoms. Cute, as always.


I love him. 


I hope this turns out well.

You're only a day away...

So tomorrow Jason undergoes hernia surgery. Despite how it’s not as bad as the asshat told us back in December, thoughts continue to linger in the back of my mind. It’s become increasingly obvious that the thought is still in the back of Jason’s mind, as evidenced by the freak out session we went through last night.

Last night was all about how much life insurance I was going to get when he’s gone and how I should just go ahead and sell my wedding ring. Last night was about every awful thought that’s gone through our minds realized. Last night was really about how scared we are.

Seriously, if I ever, ever, ever see that doctor, I’m going to clock him. That kind of poison has nestled in the back of my mind, rearing its ugly head at my weakest moments.  

So tomorrow is the surgery. I’ll sit and wait. It’s supposed to take just an hour, and then they’ll keep J overnight for observation (monitor his liver levels). The plan is that I will spend the night in his hospital room… or at least it’s MY plan. Jason thinks it’s crazy, but I don’t know how I’d do if I couldn’t be near him. Not that I can do anything… but it would make me feel at least a bit hopeful in this helplessness.

I don't know what to think any more. We just got some not-awesome news from the GI doc. I need to get off this good news/bad news roller coaster.

Maybe the only way to come to terms with being dealt a sh*tty hand is to take it one day at a time. I don't have any control over what's happening right now, and torturing myself with any sort of fiction that I do is doing no one any good.

So, he's got a mega-f*ckton of polyps. I'm crossing my fingers that they're not cancerous, but I can tell from the docs face that he's not happy with it. If it is cancer, they'll remove his colon - then likely his liver - then probably just go for the spleen and/or gall bladder while they're at it.

Friggin' awesome!!

Hmmm, missing blog?

Well, I thought I'd posted a blog, but I'm sure I got there and had to slam down the laptop. Hopefully I have enough time to pour out a few thoughts. 


So, sometime today I should find out when they're scheduling Jason for his hernia surgery. The surgeon proposed that this may happen THIS Friday. I'm happy to have the day finally come, but still have that twinge of nervousness. Hopefully things will go smoothly and this will be but a memory. 


One of my bigger concerns is how he'll deal with not being on painkillers for the first time in... I don't know how long. I'm really not sure what the lasting effects of delaying this surgery will be. I mean, I totally get why they would want to wait - but does the choice to wait, wait, wait throw J into an entirely new risk? I don't know what it takes... I just hope we can get there peacefully.

On a Plane

So, I’ve really wanted to start blogging, and it seems that it’s not going to happen so long as I have to log into any kind of website for a period of time. So, I’m sitting on a plane, banging out El Numero Dos of my attempts to share what’s going on in my life. I am just happy that I didn’t get a call from Jason saying that he’s in the hospital. Oh – and I’m over the Grand Canyon right now; as beautiful from the air as it is from the ground.

Jason’s illness has been a strange point over the past few years. On one hand, he’s very sick; on the other hand, he’s doing better than he has since the turn of the millennium. Regardless of how well he’s doing, his past history dictates that he be on the liver transplant list, which he is on here in Utah. Any time we have a medical situation arise, the transplant team is notified and gives direction in tandem with Jason’s GI docs and other attending medical staff.

When Jason finally came to his wit’s end after three years of dealing with an umbilical hernia – the pain of which has led him to be on a regular dose of painkillers – the answer was the same, even if it was a “yes” instead of a “no”:  (paraphrased) While we understand that this surgery would greatly improve the quality of your life, we must tell you that any kind of surgery comes with a high risk of mortality. One doc even had the nerve to tell us that Jason would have a 50-50 chance of making it off the operating table.   Really, 50-50? It took me a long time to get over that, and I still haven’t been able to shake it fully. The thought that I could possibly lose my husband has been too much to bear.

While the reality and possibility of death is a constant for all of us, it just seemed that much closer all of a sudden. And I knew what I was “signing up for” when it came to Jason in terms of his health, but… I wanted more than a few months of married life.

Since that time, Jason has “renewed” his information with the transplant people. He has gone in for his scans and scopes, (one of which made Jason incredibly sick and gave him intense pain) readdressed the financial requirements of a potential transplant in the event of liver failure, and has gone through all the hurdles, and filled out miles of paperwork to make sure that if and when that time comes we’re ready. Of course, in the process of all this the docs started asking “With numbers like these, I’m shocked they even have you on the list.”

All-in-all, what I’ve learned is that he will probably have no complications from the hernia surgery. They believe they can do it laproscopically (sp?), his reactions to the anesthesia drugs are very positive (in fact, they’ve had him on the fentanyl from time-to-time due to the pain he’s been dealing with between the hernia and the cholangitis and the fact that his pain meds tolerance is super high), and they probably have to worry more about his liver processing it all too quickly rather than failure (meaning that he would come out of anesthesia during the procedure… happened before, and it’s not fun).

I’m still pretty bitter over what the doc told us. It’s put us through a lot of heartache. Knowing that his statistics would be pretty good, but dealing with the possibility on an emotional and financial level was harder than we thought it would be. I was scared, giving myself small doses of emotional pain just in case… you know, so that some part of me could be “ready”. What this has really taught me, however, is that you can’t really plan these things out and you certainly don’t need to be living life as though there’s a clock, ticking down the minutes. It’s too much for any of us.

Undoubtedly, there will be trials in the days ahead and there is the constant threat of risk – but, we’ll make it through. I know we will.

Not Sure Where to Start

Some time ago, I realized that I had a need to start expressing a bit more of what's going on inside. There's a lot going on right now. In fact, this first blog is being written with my husband lying on an ER bed in front of me. I guess that's pretty much everything in a nutshell. 


This might not be the best time or place, but it's a start, right?