The formalities

For anyone interested, the calling hours will be at Seymour Funeral Home in Potsdam tomorrow from 2-4 pm and 7-9 pm. The funeral service will be at the United Methodist Church in Potsdam at 3 pm on Tuesday.

it's over

he's at peace. my mom has gone to the hospital to say a final goodbye. I took my ambien. I just don't have it in me. She'll need my strength over the next while, anyway.

messed up

I never gave much thought to the holidays in terms of what they mean when you have lost loved ones, especially when the loss is so proximate. I don't think I'll ever be able to have a Thanksgiving without remembering what a lousy holiday we just had. It's the first Holiday, and I certainly hope the last, where I spent the day at the bedside of a dying loved one. It's fortunate enough that my kids don't quite "get it" yet, and for that I am thankful. It's hard enough to answer the questions I am getting...

why is papa still sleeping?
when is he going to wake up?
why is grandma still at the hospital?
why is papa's door closed?

The older two know about the cancer and they know that eventually he will die from it. But they don't understand why the papa they saw who was just"fine" on Sunday morning will not be coming home.

Wednesday afternoon when the severe bleeding was confirmed, the doctor told us it could be a few hours or it could be a few days until he passed. They said he wasn't in pain, although i guess we really will never know. He seems comfortable. 48 hours later, and several "we think it's imminent" moments, he's still fighting. You can hear his breathing getting weaker and you can see that he is slowing down, but he's still hanging on. I wish this could be over, and I would never say that if I thought there was any prayer of him coming back. But there's not, and he wouldn't want this dragged out, any more than we do. It's been the roughest week of my life and the worst 48 hours I have ever known. The roller coaster ride is nearly over, although the sadness of the loss-to-be is just beginning to settle in.

From bad to worse

Things have gone from bad to worse and there is little that gives me hope this evening, except that he is comfortable and loved. For nearly 30 years he has been my daddy and I am facing the reality that I am going to be a fatherless child before my birthday, probably before that. The bleed has progressed and now we have to wait for his body to tell us what his mind can not. I think I need to go to bed. It will be a very long next few days.

downward spiral

my mom just called. something happened overnight and there is more bleeding at the clot area. he's basically non-responsive and not likely to change. So I am heading to NY after all. Apparently any germs I bring won't really make a difference at this point.

Round and round we go

My mom went to visit my dad when she got done working this afternoon, to find he had digressed yet again. Slow, garbled, weak. She said he had improved slightly by the time she headed home this evening, but the scan they did this afternoon shows a little bleed by the clot. Dr said he it isn't "critical" just "difficult."

I was planning to go over tomorrow afternoon and stay for Thanksgiving day and maybe through the weekend, but since we seem to have this giant black cloud that refuses to budge, that won't be happening. I now have a fever, so my visiting and bringing germs becomes the last thing my daddy needs, despite how much I would like to be with him and my mom and sis.

Seizure

is the latest word. The doctor believes that yesterday's "episode" was a seizure caused by the blood clot. His motor control on his right side is improved over yesterday afternoon, so that is positive. Right now, he basically gets a babysitter in case there are any more seizures.

The Tables Always Turn...

So later this morning my dad had some kind of "episode" as my mom referred to it. Maybe an anxiety attack of some sort, not sure. But he was distressed and had labored breathing. They took him for testing and have determined there is a clot in the brain, and the inflammation is causing some of his symptoms. Right now, he's resting comfortably and the have increased his anti-inflammatory meds. My mom said when he is awake, he seems to be able to articulate fairly well and is annoyed at having to be in bed. He also asked for lunch, so that is good.

But right now, we're still on hold mode and waiting...

Those random hour phone calls

The ones I generally hate because they seem to never be good. Well this one was good and totally made my Monday morning. My mom called to say that my dad called her!!! He was able to use his right side enough to make a call. And he was grumbling about how hungry he was. He's no been cleared for some food, at least liquids, maybe the eggs he wanted, I'm not sure. But he was able to make a call and doing really well this morning. Such a relief to hear a hint of hope in my mother's voice. Word on the street is that if he continues to improve, he may be able to go back home in a few days. Keep those fingers crossed.

Irony

It's funny how life works sometimes. Ironic that my sister posted the post she did yesterday. And also ironic is how the timing of the next 24 hours played out.

We drove to Potsdam yesterday morning to celebrate an early Thanksgiving Dinner as a family. After dinner, my parents were going to watch our kids while we went to Gouveneur to visit very close friends, including one couple who is only in the States for a few days.

We had a lovely dinner with my parents, my family, and my sister and her boyfriend. It was a nice several-hour affair with yummy homemades, including an apple pie I made upon my mom's request. We visited and then headed to visit our friends for the evening. We had a lovely time with some of the most amazing people I know. The kind of people you can only hope to have as friends. Relaxing, music, food and wine, and games. Just an overall nice evening. And then a leisurely morning of homemade banana bread and coffee.

I was supposed to get together with my sis for coffee on our way back through, but she wasn't feeling great, so we skipped it. I called my mom to check on the kiddos and see if there was anything I could grab from town. She suggested the paper for my dad. So we found a store that had his preferred paper in stock, and headed home. All the kids were playing a reading quietly when we walked in the door. I went to the living room to bring my dad his paper. He was napping and didn't really respond to my handing him the paper. So my mom kinda hollered for him to wake up and be sociable. But then he still didn't respond, which was odd. When he did respond he was clearly out of it and incoherent. And then we noticed the right side of his face was kinda droopy. Oh $h!t!! So talk about crazy timing. Dial 911--they are on their way. My kids are packed into the car and headed to the store to "run an errand" by the time the ambulance arrives.

They do their thing; my dad is on his way to the ER. I ride with my mom and my hubby takes the kids to lunch and the playground. My mom had tried to send us back to VT, which is what the original plan was. Nice try, mom. I'm not going anywhere except with you <<>>.

Crazy next few hours, but a CT shows no bleeding in the brain and no tumor (which was one possible explanation). So it turns out to be "just" a small stroke. But it could have been worse, I guess??!!!?? Certainly didn't seem that way at the time.

When we finally headed back to VT this evening, he had been admitted and was still "stroking" as they called it. By the time my sister left awhile later, he seemed to have improved and had some coherent moments and his limp right side was a little stronger.

So now it's more of a waiting game. See what happens over the next few days. He may go home soon; he may never go home.

I'm thankful for a lot of things in this life.

• Thankful for the extra time we have managed to get over the last 8 months.
• Thankful that we were able to have a nice dinner together right before this happened.
• Thankful I was able to be there for my mom when this did happen--she always acts like things are fine and she has everything under control, but I know it's a facade most of the time. She's good at bullshitting to protect us when she feels the need to do so.She is my rock.
  
• I'm thankful for supportive family and friends, as I really don't know what I would do without them.

And I'm thankful for the love that has always surrounded me that helps me to be positive even when the world is crashing down around me. My mom and dad are amazing people, and even in the face of all this, they have been optimistic and upbeat.

As my dad would say, now we just "wait and see what develops."

What's this "last" you speak of?

What's this "last" you speak of? We don't talk like that. This has been by far the most stressful period of my life. I never realized how much this whole process takes out of you, even as an observer. It consumes mass amounts of time, finding new articles, more research, anything to give me a little extra jolt of hope. As the weather changes I can see the change in my dad's attitude. I still haven't been able to decide if it's becuase the days are getting shorter or his life is. It's frustrating when the most happy-go-lucky guy you know with a million jokes has nothing funny to tell me when I call.
I don't think that dad's received the oral chemo yet. It's supposed to come in the mail and first they had to get through all the red insurance tape which is ANGERING to say the least. Couldn't they just send it and deal with the red-tape later? It's been a little over a week since he should have had his last treatment and I feel like in the mean time the tumors could be growing and there's some lady somewhere sitting behind a desk on her thumbs who doesn't know my dad, or care how much he means to us. Every day that we waste is a day that we could have...well...not wasted.
He went to the ER tonight with pain in his foot and ankle, it was all red and swollen so we were worried about an infection. Turns out it was uric acid build up from being dehydrated and the kidneys not filtering out as much as they should. It makes me nervous...was this just a fluke thing or is something wrong with his kidney's now? Everything makes me panic. Panic is my new state of being, I guess. I jump when the phone rings, and each moment that I'm not with him I worry that I'm not spending enough time with him.
Once classes are done for the semester I think I'll start going over there more. Maybe with the oral chemo he'll have some more good days and we'll be able to travel or do something fun as a family.
Jana's coming up tomorrow so we can have an early Thanksgiving. Although it might not feel like it at times, we are blessed and have so much to give thanks for. It will be nice to be together even if it isn't the "actual" holiday. I think we should make our own holidays. Every day we spend as a family should be a holiday. A day to give thanks, a day to be greatful for the people and things in our lives that have made us who we are.
See you all tomorrow!

More Clarity

So my dad is going to be taking an oral chemo for 2 weeks, and then take a 1 week hiatus before going back to the doctor for a follow-up. My mom was telling me that the chemo pills come with a "starter pack" because the chemo will make the skin on my dad's hands and feet more fragile. So he'll have to be extra cautious of germs getting into the compromised area, but he get a tube of bag balm or utterly smooth or one of those super moisturizers.

He goes back to the doctor on Dec. 10.

Usually we travel to PA to see my in-laws at Thanksgiving. This year, we are spending it with my family, since we know it could be the "last" Thanksgiving with my dad. I will be spending it being thankful for the wonderful family and amazing supportive friends we have.

Well, Dang

So the last time my dad had chemo (2 weeks ago) he had been feeling extra tired and he and my mom talked to the doctor about it. The proceeded with the scheduled chemo, but planned on doing another CT scan at the next visit.

That was yesterday.

Chemo was scheduled for 930 this morning. My mom and dad meet with the doctor beforehand.

No chemo today, starting an oral chemo instead.

As it turns out, on the scan from yesterday, the larger tumor on the liver was a couple of cm larger than the last time. I honestly have no idea how the rest of the conversation went, because I zoned out while thoughts whirled and processed in my head. I think my dad said something about the smaller tumors, but I'm not sure. I heard something about heading back to my house to get the donuts he left...and that the port chemo seemed to not be working and they were switching to an oral chemo...