Just not much to say. Dad sleeps all day. Supposed to start chemo next week. Antibiotics ended 2 days ago, and the fever is back. He has spent most of today in bed feeling like shit. Guess he’ll be back on those bitches until …. well just until.

As for us….

School is almost over. Shoot me.

I have graduated to the level of “Maintenance”. No longer shall I be fucked with by med changes. I am on the perfect combination, and I feel great. Brain wise anyway.

MB4 is better, but there is still a ways to go. I don’t want to hogtie him and throw him in the closet anymore (well, not as much), so I guess it’s going in the right direction.

I’ve decided not to turn 35. It sounds really ugly, and I ain’t going there. Period.

Speaking of, that’s what finds you a week early when you pamper yourself all day for a night on the town with your husband when a friend offers to babysit all night for you. Yay me.

I’m going to eat ice cream from the carton for the very first time, and woe the fucker that raises an eyebrow.

This doc was a bit more positive. Said he doesn’t give out information that’s nothing more than a guess, so he didn’t answer any “when” or “how long” questions. Nor does he deal with people who aren’t serious about at least trying to get better – so dad agreed to chemo AND the clinical trial. Talk about shock.

The plan is to try and shrink the cancer and possibly zap (?) it later. When asked if he thought he could ‘cure’ dad, he said he doesn’t use that word either. Once you have cancer, you always have it, as far as he is concerned. But that he has been pretty successful giving back years to people that cancer was expected to steal.

He said the other scans couldn’t be properly read, because of dad’s messy insides. He still has cadaver pins/staples/whatever they’re called in there. I didn’t know that. Gross. They have sort of fused together over the years into this clusterfuck, and I guess it’s difficult to know what’s going on in there. Couldn’t even check during surgery, because everything seemed “melted” together. Surgeon was afraid of rooting around too much. Not sure what was holding what together. Nice.

Said they would proceed for now as if it’s only in his liver with a few dots on the lungs, unless something along the way indicates otherwise. He is also going to test for something that will tell if it’s a defective gene or something like that. Then they can test MS for it, then the kids, me, etc. Would tell who REALLY needs to be tested regularly. Mom said he seems to know what he’s doing. Seems to be confident, etc.

I feel better. Quite a bit better. Guess it made dad feel tons better, since the surgeon just yesterday shared with him the same grim bullshit he gave us after the surgery. Dad hasn’t said much since then. This has perked his mood considerably.

I sure hope this doc is as good as he thinks he is.

Dad’s appt is right now. Right now. I feel like my whole world is riding on what the doctor is saying right now. Up until now, the news has come in bits and pieces and hints and pity glances. Today they find out the results from all of the tests. And the fact that they waited until today to talk about the rest of them probably means bad juju’s. They called about the bone scan and happily said ‘all clear’. Not the case with the other ones.

I wish I hadn’t asked what time his appt was.

Not sure what’s going on, but what else is new. Antibiotics must be working, because they let dad out for Easter. Unfortunately, the home health nurse said yesterday that he really should be headed back. He was moving around, but it was very forced, and you could see how even a few steps wore him out. I expected that. What I didn’t expect to see was his face. He looks sick. He has the eyes of someone who is very ill, and it made my stomach turn to glance in his direction. I wonder if the kids noticed. How could they not?

My mom pulled me aside and told me that dad has warned her to stay in the car for his oncology appt on Thursday if she wants to remain ‘in the dark’. He plans on asking for the bare bones truth. Can it be beat, would the doc try in his shoes, and how long does he have if he does nothing. Basically everything we all want to know but only if the answers are favorable.

——-

I meant to take pictures since dad was out, but after seeing him look like that, I decided we didn’t need to have those images captured forever. I’ll snap them when he recovers a bit. Let’s hope I’m not kicking myself later for this decision.

——-

I watched dad as he watched the kids find Easter eggs in the yard. He usually spends a few hours hiding the eggs, but this year we slipped MB2 out the back door and he hid them. The hunt felt forced and awkward and was over so fast it almost made no sense to have it. It was cold and nasty outside, and no one seemed to be in the mood this year. That happens sometimes, but it shouldn’t have happened this time. This might be the last Easter for dad ……. the last spring, the last summer, the last winter. Somehow we need to find a way to prevent the reality of that from ruining the moment.

I just don’t see how that’s possible.

I made a little extra money this month doing some site maintenance, and I’m thinking maybe I’ll use it to buy dad a Nano. He loves music as much as I do, and I know it’s killing him to be away from his beloved computer – custom made to blow your mind.

Problem is, I know he doesn’t use iTunes. At least I don’t think. He has tons of music, but they’re mainly mp3’s. Would I still be able to load them? I guess I could install iTunes on his computer and convert everything over, but wouldn’t that convert them permanently?

I’m looking to make this as easy as possible. My brain is completely fried lately.

Scrap that. Blood cultures did find an infection – in his chest tube. Started him on more antibiotics today, and they’ve stopped all food/drink again until they know if he’ll need surgery to remove it or not. That’s about all we know. The surgeon is away again. Sub surgeon won’t be in until tonight.

My head is spinning around and around. We all just sit here in an awed state of shock as this circus marches on. Not sure how long they’ll give the meds to work. Not sure why the fuck this hospital has been ok’ed to work on humans. Not sure when mom will finally make the decision to move him to another one. Soon, I hope.

Looks like they are sending him home tomorrow. They had talked about keeping him in until the blood cultures were back and possible quarantine and all kinds of good stuff while they figured this fever out. We haven’t heard about any results, but I’m assuming this means they are now viewing the fever as a fever, and not an infection. It’s been a few days, and mom’s information is always delivered in a jumbled, hazy mess – but I remember her saying that one possiblility was that the fever was a normal part of liver cancer. We weren’t listening to that at the time. Perhaps that’s the answer now. Who knows. Whatever the reason, they told mom today that they can’t keep him there forever, and he’d be happier at home. I know he IS happy to be going home, but it still sounds rather creepy to me.

I keep squeezing my eyes shut, but this shit just doesn’t go away.

Dad was visited by a clinical trial guy today while mom wasn’t there. He basically asked dad if he was interested in participating in their studies, even though his cancer wasn’t treatable. Said the research would benefit others.

I sure wish mom would have had the heart guts to talk to dad about the prognosis before this prick – who probably is a very nice person, but everyone is a prick nowadays – spilled the beans. I can’t imagine how he felt to find out like that.

Gee. Wonder what wonderful joys tomorrow will bring.

It’s really surprising that this hasn’t fucked up ‘me’. I mean, yeah, I ain’t in the best of moods – but that’s to be expected of anyone. I don’t seem to be handling this any differently than anyone else. I honestly thought this would rock my world back into the dark days. Guess the meds are holding strong. Thank gawd. If anything, I feel almost stronger than usual. More ready and alert. I still haven’t seen my doc since all this happened. Just not top priority right now. Especially since I seem to be doing ok.

MB4, on the other hand … geebus. After spending a few weeks in the depths of hell with that boy, we talked to his doc about starting him on meds for bd. This was right before we found out about dad, and I sure would like for those fucking pills to kick in. We spent a long time reviewing his behaviors with his doc, and his teacher is starting to have trouble as well. He’s either super hyper or super pissed or super silly or super devastated. There has been no middle ground for awhile now, and I can’t take it anymore. It’s a war zone around here, and I have exhausted everything I know as a parent to try and ‘fix’ this. His doc thinks maybe the zoloft we’re using for the ocd has stirred up some shit in his system, which makes sense as anti-depressants were always bad news for me. She said we’ll try off-setting it with bipolar meds for awhile and see what happens. If it doesn’t help, we’ll stop and try something else. His regular doc is setting up an evaluation with the team from the facility I use. They are supposed to be excellent – and they don’t take nearly as long to get the appts set up. Trying to keep pressing ahead to get him what he needs while dealing with everything else.

I suuuuuuuuuuuuuuuuuuuuuuuuure would like a smoke. I can taste it.

Dad is pissing on his own and eating jello. That’s major folks. He asked to be taken off the morphine as well, and is in a great deal of pain as a result. But he wants out of there, and that’s just another step toward the door.

He was visited by a round of docs today. Basically told him nothing new. Still has the fever, and that is really causing the most concern right now. More blood cultures were ordered, as well as a few more xrays. Not sure why they need those.

MD took him over a stack of books today and mowed their yard. Wish there was more we could do at this point to help.

He has been moved from critical care to a regular room, so that’s good. Still not allowed food or liquids other than gatorade. Fever still hanging around. He still looks pale and so very small.

Oncologist pays a visit tomorrow, along with the infectious disease people/person/whatever. Not sure what more I’m hoping to find out. It’d be nice to hear that this has all been a terrible mistake.

I realize that dad could be around for many years to come, but it’s starting to sink in that more than likely he won’t be. I no longer cry when those thoughts slip out and surprise me. No longer letting the anger eat away at me either. Instead I feel numb and very cold. I’m still angry, I just feel too dead inside to do anything about it.

MB1 and MB2 were fighting about a pair of headphones. I heard MB1 say that he was going to shove them up MB2’s butt, and as I was about to step in when I heard MB3 “but then there wouldn’t be room for his head”.

Guess my sweet kiddo ain’t always so sweet. I sure needed the laugh though.

They had to give dad blood tonight. His blood pressure is high. He’s been clammy all day. They still can’t kill the fever. There’s blood in his urine, but they aren’t sure why. The surgeon went on vacation, and no one seems to know what the fuck is going on.

This hospital might kill him before the cancer gets a chance.

Our 16th anniversary today. Not sure if we are doing anything or not. Not sure we feel up to it. Feels shitty having a good time with dad in the hospital.

Went to see dad. He looks good. He looks real good. Was actually up walking around (with help, of course). He’s already itching to leave. He loves hospitals about as much as I do.

Not sure what he knows at this point, but I feel better today after talking with a few people. People that reminded me that the shitty statistics are for older men, and dad is young-ish and otherwise healthy. I’d like to believe that, so I think I will. Doesn’t mean I won’t continue to prepare myself just in case, but I can be hopeful and guarded at the same time. I think.

Woke up this morning sick as a dog. Not exactly the greatest shape to visit someone in the hospital – especially when that person is fighting an infection already. I know he’ll probably be out of it for a few days anyway, but I still feel bad not being able to be up there. Although I wouldn’t put it past my body to throw me a flu curveball to avoid stepping foot into the hospital. I do hate it so.

Trying to plunk along with regular life, but my plunking feet are awful heavy. Lots of fast food lately. Laundry remains untouched. House is a cluttered mess. I need to run errands today, but I don’t see that happening – even if I wasn’t sick. I just don’t give a shit. Not to say that I’m depressed, because I’m not – or I don’t think so anyway. I’m just shellshocked and sad. My focus is on dad, not mopping the floor.

Took about 6 hours. Tumor is gone, they were able to resection his whatever (meaning the colostomy bag is temporary), and his vitals were strong the entire time.

It has spread to his liver and lungs. They installed a tube in his chest for chemo. Doc said he should get his things in order. Not that it will be that soon, but he said “this will take his life” – and he said it just like that. Gave it about a year or two – with treatment. gah

Anyhoooooo – going to go take a hot bath and try to forget all of this.

My parents called this morning and asked if they could pop over for awhile. I figured they’d do something like this to make it easier on me to talk with dad. Social visit might take the edge off. They were here for a few hours, but I don’t think I could repeat 99% of the conversation if you held a gun to my head.

If I survive the surgery….blahblahblahblahblahblah …..

What? If?

Well yeah hon, blahblahblahblahblah surgery with serious infection blahblahblahblah, ……. about 50/50 blahblahblahblahblahblah.

But the new antibiotic ……

Can’t shake it …. blahblahblahblahblah called in an infectious disease specialist blahblahblahblahblah

That’s about it. Don’t remember much else. I didn’t know the surgery was that serious. I knew there were a few risks, but not 50 fucking 50. What the hell is that? 50 50? No more than a flip of a gawd damn coin. I still don’t know why it’s that serious. I think they might have tried to explain, but I was too busy shoving this information behind the steel wall. It’s hard to process that he might only have a few years left with us. Anything less than that is impossible to comprehend. Suddenly realizing that it could be two days is about to fucking suffocate me.

No comments. I turned them off. Instead of sending a hug to me, ask your God to fix my dad.

However, if you know why they are giving such shitty odds, I’d appreciate an email. I can’t find any info about having an infection before surgery, just ones resulting from it.

Gorgeous today. We were outside the entire day. Soccer games. TBall Practice. Yard work. Park. Kites. You name it – we did it today. As a result, everyone in this house crashed at 8pm – including my two ‘might as well be mine ‘cuz they never freakin’ leave‘ kids.

I enjoyed the quiet for awhile, then realized that I was actually tired as well – and that shit don’t happen very often. Thought maybe I could get back on track if I went to sleep early.

Then I heard the thunder. Then I saw the lightning. Then I watched as the news people started dancing around because of another fucking storm blowing through. I hate severe storms at night. People go to sleep and a tornado rips into their dreaming asses. Not this chick. Not this house. Not my kids. I’ve always stayed up when there are storms.

The kids were sprawled out everywhere, so I herded them all down to the basement. Wee one is two steps away from me right now, and that only leaves MD to worry about if shit goes down.

And now I am so tired I can barely keep my eyes open. Two more hours of this – at least.
Gah