huh

It's still very surreal. Most of the time I'm fine, but there are the occasional reminders that tug at the heartstrings. The questions I get from the kids are the hardest. This weekend, my mom was reading to Zach and he asked her if he could say goodbye to Papa. Ugh. He had come into the hospital to talk to Papa and say goodbye when we got there the night before Thanksgiving, but while he is old enough to "get it," I'm not sure how much he really does get it.

It's going to be a strange holiday, that is for sure. And next year's will be just a rough, I expect. Maybe worse. But I hope they will get easier as time goes on. I was wrapping gifts last night and came across the things I bought my dad for Christmas. I had mentioned to Erika that I had these things, and we half decided that we should have a "dad" night and try to enjoy some of the stuff we had already bought (favorite hot chocolate, mugs, and 24-hours of WWII documentaries;) in honor of him. Obviously, my mom will be invited, too, assuming we do anything. But at least we could all be together and feel close to him and one another.

proud papa

It's been a rough week, as you can only imagine. But is amazing to see how many people's lives daddy touched in such a positive way. It seems he wasn't just our light, but sunshine for others as well. I think just about every person I spoke to Monday and Tuesday told me how he always talked about his grandbabies and how proud he was of me. It was nice to hear. You know you think they are proud of you (or at least they have reason to be) but you only hear it once in awhile. On days when you really need a lift, it seems like a nice way to honor someone by sharing stories and memories.

There were some funny ones, let me tell you. My dad was one accident-prone man, I think from the day he was born and on. The stories i have heard over the years and some new ones I have heard in the last week...If you know my dad, you know what kind of stories they were...

Today was my mom's 64th birthday. Pretty hard to celebrate after yesterday, but we all have to move forward. Life goes on and so must we. We found some pretty funny things that made us laugh today, so we are marking new memories of daddy as well. And then we went out for dinner wih great family and friends, enough to relieve the sadness even for only a short while.

I am taking mom back to Burlington with me on Friday. We are going to Boston to the American Girl Place and doing the sleepover at one of the hotels nearby. Should be fun and will certainly be a distraction. What cute granddaughter isn't? Oh, the shopping in Natick, MA, won't be too bad either.

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...

QT

I was really glad to have my sister bring my dad to Vermont for his treatments this time. I miss seeing her. It's never often enough. Somehow as adults, there are never enough hours in the week (or something comes up), and we are prevented from frequent visits. I just wish the reason why we are getting to see more of each other could be different.

Latest Scan

My dad had chemo today. He got the results from his latest CAT scan--one larger tumor is about the same and some smaller ones have shrunken. We'll take it. Doctor says since things seem to be working, they will continue with treatment as it is currently scheduled (chemo every 2 weeks). 

Every 2 weeks is much better than the 3 on, 1 off they were doing when he was in the drug study. We get more "good time" in between treatments.

It should be interesting. Daryl and I are going to France for a wedding in about 2 weeks. My dad will have another treatment the week before we leave. My mom is coming to watch our kids while we are away...9 days. My dad said he wants to put a ham radio antenna in our yard while he is here for that week (I guess he's decided he's coming with her). Um, yeah. I guess that's okay since we won't be here, but that thing had better be down and back in his car by the time I get home!!

Well, crap

This was a source of hope.

http://www.washingtonpost.com/wp-dyn/content/gallery/2009/09/14/GA2009091403019.html

Plan B

My favorite mid-day phone calls are just never what you expect. My parents came over to Burlington Saturday late afternoon to spend the weekend prior to this morning's chemo appt. Dad had been a bit sleepy/lethargic and had a poor appetite this weekend. So when they showed up for chemo this morning, the doctor's decided not to give him he treatment. Apparently the pre-chemo blood work he had done Saturday show an elevated bilirubin count. With that and the behavior changes this weekend, the doctors think there may be an issue with the stent(s) again.

Plan B: spend the night with us again tonight to be available for surgery in the morning. They will do a general anesthetic so if they find what they think they may find, they can replace/re-stent the current stents. More waiting games.

This whole ordeal is so difficult to watch. I see my father fading away into a thin, lethargic, unrecognizable man. He puts on his mask so that no one really knows what is going on at times. I'm still not sure if that makes it harder on us or not. But my mom deserves a medal and a serious vacation for the stressful, scary, chaotic roller coaster she is on.

Frustration frustrates me (I needed to unload)

Dad went into the hospital again. Thursday night he spiked a fever and was completely out of it again. I went with mom to the ER and stayed there until around …hm. That’s a good question. It seems lately my brain is overloaded. He stayed there til Monday afternoon getting IV antibiotics, fluids, tests and such. Turns out he was just sick from the chemo and had some sort of infection brewing from the port insertion, but sick none the less.

All of this keeps me on pins and needles. I jump to get every phone call when I’m at home or my cell when I’m out. It’s been 5 and a half months since his diagnosis, and I still don’t think I have completely come to terms with the whole ordeal. I try to spend time with him, but it hurts so much, seeing him get thinner and more tired. I need to put my heart aside for now and spend more time while I have it. Each milestone that should be happy is hovered over…what if it is the last Easter, birthday, or anniversary. But I need to make more of an effort or I will desperately regret it.

We try to make the best of what we have, that’s how our parents raised us:

* to be humble and understanding

* to be a friend to all those in need

* to make the best out of even the very worst situation

* to celebrate our lives and loves

* be thankful for our accomplishments

* to grow our character into wonderful, loving caring adults

* to try to make a difference in the lives of those around us

I look at my sister and I see how lucky I am to be blessed with such an amazing, loving caring family. My sister and her husband have beautiful lives and beautiful children. They are successful and caring, everything that we had growing up. My mother is the most amazing mother anyone could ask for and has put up with a lot from me over the years and still loves me just the same…and I love her with my whole heart and soul, she’s my very best friend. Dad loves her with his whole heart, even now, after 40 years. And it’s so bittersweet because every day I wonder if I’ll be able to accomplish anything important before he’s gone, so that maybe I could find comfort in knowing that I’m not a total disappointment to him. I’m almost 30 and still rent a house, no husband, no children, still working on my degree. (pity party, table for one?) I wish I had time to do all the things I wanted to do with him. Hear all his jokes one more time. Have him walk me down the isle, and hold my first baby. It’s a terrible thought that my children might never know how amazing a man he truly is, or how much we laugh alike, or how much he will love them and spoil them.

I thought at some point I would come to terms with this illness, or that maybe he’d be the 1% that beat it and I’d have him here forever. Give me time to show him the loving, caring adult that I’m still becoming. Lately time does not seem to be on our side. There is still no cure; the cancer and the chemo are slowly eating him away. Each time he goes back into the hospital for one reason or another, it reminds me that it’s going to get a lot worse and I have to keep a stiff upper lip and my chin up and be strong for him and my family.

Oh...

and it's a port that is in his chest, not in his arm. Kind of like this:

http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Linesports/Implantableport

Things have been reasonably quiet

Pretty much status quo around here.

My dad had a port put in on Monday. He'll be receiving his chemo drugs through that instead of the veins in his arms. Apparently the chemo does quite a number on the arms when so that way, so the port is supposed to make the whole process a little smoother.

Released

Well, he was going to be released this morning, but it only took until 320 pm to get discharged. My dad was definitely tired and sore when I saw him last this afternoon, but my mom was taking him back to their house. Hopefully he'll be back to his good ole self in another day or two.

Health Care Sucks

So I experienced first-hand as the outsider just how bad our health care system can be. I've had experience with the local hospital, and it has always been pretty good, minus a few annoyances that caused delays, but due to emergent situations arising before my scheduled procedures, which were not as emergent (and as a patient, I would rather they deal with emergent situations as they arise). I have also always had good, locally-based insurance that is "in bed," so to speak, with the hospital.

My dad on the other hand, has minimal coverage, at best. And it certainly seems to make a difference; maybe they were just having a bad 48 hours.

The surgical staff for the ERCP was amazing. His nurses were great. But some of the other services that go along with a stay in the hospital were less than adequate, as far as I am concerned.

The run-around BS that you get is ridiculous. 

Yeah, we're going to do your procedure as soon as you get to Burlington. Nothing to eat or drink (NPO) from 10 a.m. on.

Um, really? At 730 pm? Doubtful, but what do we know.

Oh, yeah. Procedure not happening tonight. It's scheduled for the morning. So you can eat. 

Dining service? Not so much. That would be waitress Jana going to the cafe at 830 at night to pick up a meal because no one was around to bring it up to the patient care area.

Oh, the surgery is scheduled for 1 pm you say? Awesome. NPO again from midnight on.

OMG, they actually brought him to endoscopy at 1 pm, in surgery by 140. Miracle. And it went smoothly (the only part that really did). You can eat as soon as you are back to your room.

Oh, we didn't order you a dinner. You can call and have something brought up. 530 call. 650 no food. 651 call. 730 food. For real??? No food since midnight and you can't figure out how to get a meal up there. Pathetic. Really pathetic.

Pain meds? Oh, apparently he has surgery, in addition to the fact that he has friggin stage IV cancer and is in pain all the time, and he has to hunt down a nurse to get something. Fortunately, once he got the nurse, it wasn't long before she administered the happy meds so he could have some relief.

But seriously? How delinquent can one set of people be over the course of 48 hours. No, certainly he wasn't going to die in there, but he certainly wasn't treated as he should have been.

Okay, rant over. I need some sleep before I have to deal with "them" again tomorrow.

Double Stent

My dad's ERCP went exceptionally well today. Turns out the tissue and grown into the mesh and was causing a blockage. They put a second stent inside the first to give it extra support and drained a ton of nasty, tarry-looking bile (I saw the photos from the scope). I can only imagine how awful one would feel with that nasty stuff in your system...eewwww. But I digress.

The procedure only took about 20 minutes, by far the shortest, easiest form that procedure can take, according to the nurse who was in with him. Overnight for observation and then back to Potsdam in the morning.

Thank goodness this was as "simple" a "fix" as it was. My poor mother and sister had seen him in pretty rough shape. I was fortunate enough not to get to see that side. But for their sanity, I am soooooo relieved this was nothing related to the cancer...just an old person plumbing issue. :)

Those Off-Time Phone Calls

My sister called me at about 12:40 p.m. I instantly knew something was up because she never calls at that hour of the day, as she knows I am at work.

My dad went to the ER last night with a fever, very out of it, and among other things, they determined he had an elevated bilirubin count. They admitted him to CPH for the night. Apparently he is being transferred to FAHC this afternoon and will here overnight for (hopefully) surgery tomorrow. They think the stent in the bile duct is blocked, but they aren't 100% sure of what is going on. Right now the plan is to unblock the duct and see what else is going on.

I should have known something was up when no one answered the phone at my parents' house last night...prayers and positive thoughts, please. I hope this is just one of those ups and downs and there will be more ups to come.

40th

My parents celebrated their 40th wedding anniversary last weekend, a milestone for sure. I've been celebrating anniversaries with my parents for as long as I can remember. I wonder if my dad will make it to their 41st.

IHOP

So this is only sort of related. Related because my family was here in VT for chemo (that didn't happen because of some levels on the blood work results...maybe Erika can add some detail to that), and we went to eat at the recently-opened IHOP in the South Burlington Mall.

We tried to go last week, but there were about 20 people in front of us, so we decided not to wait that long. So we tried again today. I say try (I'll get to that part), because even though when we arrived, the restaurant was half empty, we spent more than 40 minutes waiting for our meals. And that was after the 10-minute wait to order drinks and another 10-minute wait to get (some of) them. Three waters, an iced coffee, and a Pepsi. Not too difficult, at least my former days as a waitress tell me it's not.

After about 20 minutes after we got our drinks, the waiter came back to refill my iced coffee. Seeing as how they weren't busy, I asked about our meal status (thinking they should be there any minute now). He said about another 6-7 minutes. Ooooookaaaaaay, 30 minutes for breakfast food on a slow day. But alas, no food in another 6-7 minutes, not even in another 20 minutes. I flagged down a waitress and asked her to check on our meals. She went in the kitchen, came back out, and proceeded to set her tables without even stopping back.

About 3 minutes later, our waiter comes out of the kitchen with (again, some of) our meals. And they are....wait for it...COLD! Clearly they have been sitting there under the lamps for quite some time. Nothing remotely fresh about them. Ugh. We are NOT eating this, and definitely not paying for it. The waiter goes to get the manager (another wait). He comes over to let us know he's going to comp the meal (ya think?!?!), blah blah blah, and would really like us to try them again sometime.

Um, no. Not even if you comp that meal, too.

So I came back to work without having eaten lunch. Whatever. It's a good thing I had some Pop Tarts in my desk drawer.

Another sleepless night.

I couldn’t sleep at all last night. Literally. Not a wink. I finally took a nap at 9:30 or so today. Darn Patrick Swayze. You might giggle, but for real, it was completely his fault. See, I was all hopeful that dad was going to be just fine on the premise that Patrick was diagnosed with pancreatic cancer and he was just fine. Now he’s sick…really sick. He was my great white hope. What a poo. Then I started thinking about the lady with no expiration date. Hm. Haven’t seen one of those commercials in a while. Maybe she expired. Too bad…she was really very pleasant. Michael Landon. He seemed like a nice guy. Successful, great dad on TV and in real life too. Uncle Bob. Amazing dad, wonderful guy all around, a really great uncle. Maybe bad things like this only happen to really nice people. I should have mom look into being a little more rotten for safety’s sake. I talked to dad for all of about 2 minutes and then he let me go. That’s how you know he’s not feeling well, when he declines the offer to talk to one of his babies.

One Month

It's been a month (and 2 days) since my dad went into the hospital for what we thought were just gall stones.

And one month since the diagnosis.

It weird. Sometimes I think this month has flown by. Other times, it seems to have dragged on forever. I love seeing my family more often; I just wish it was for some other reason. It's stressful, because every time I see them, I don't really know what to expect. Everyone's moods are up and down and all over the place.

My dad is really tired all the time, but he puts on a good game face. Sophie asked this weekend in papa was going to keep visiting until he died. Um, yeah, he is, but why do children have to always call it like they see it?

Thank God we have family and friends. It's amazing and comforting to see the amount of support we have all received. You know who your true friends are when they rally in a time of need to make sure you are getting support and help.

Most days are pretty good for me. I have a few bad ones (like yesterday) where I cry for what seems to be no reason at all (but yes, I realize there is a reason). But I worry most about my mom and little sister and how they'll fair through this and how they will carry on when my dad is gone.

Each time I see him, I get a little more scared because honestly, I never know if it will be the last time. We certainly hope that the chemo, etc., will by him some time, quality time if we are all fortunate, but the fact of the matter is, he's got a terminal disease. So for now, I'll just count my blessings that I get time period.

Ah, another day

There's been an amazing amount of support from friends and family which is so needed at a time like this. Mom's friends from work are putting on a Jamboree on June 14th to show their support. It's really nice of them. I spent Easter weekend at Jana's with the whole family, and Justin as well. Dad seems to be getting more sick from the chemo, but I suppose that's par for the course and to be expected. Hopefully things will get better after a few cycles and he'll start to get his energy back. He's just so tired and down all the time :( Every other Wednesday I get to see Jana since I'll be bringing Dad to half his chemo treatments. That will help, at least I know that every other Wednesday night I can cry if I need to. I think what hit the hardest was Sophie pointing out to me that poppa was going to die, and that Zach and she wished that poppa wouldn't die til they were older. Me too kiddo, me too.

Choked Up

I've been having a few less random emotional outbursts than I was having before; I can't decide if the reality has finally sunk in and I've accepted it, or if I'm still in denial. I guess either is a possibility. The worst is when I talk to him. I can hear the emotion in his voice. Until now, I've only seen my dad cry a handful of times in my life...so few I could probably count them on one hand. Okay maybe 1 1/2 hands, but you get my point. My dad just doesn't cry. It's so rare. So to see him cry and get all choked up when he talks about the "gravity of the situation" (his words), is unnerving.

He's going to be in Burlington later today for his second chemo treatment. I'll be over there holding his hand.

4 days

I spent 4 days in heaven with a girlfriend this past weekend. It was a much-needed vacation. The fact that it was booked before my dad got sick, well that was just good timing I guess, because I wouldn't plan to be away for days at a time right now. Although I had a blast and tried not to think about reality back in the U.S., it was the longest time I have gone w/o talking to my parents or sister in the last month.

I was sad to learn that although the chemo treatment went as well as can be expected, my mom said my dad was pretty depressed the the day after, but is back to "normal" now. I use quotes, because (even if you don't count the cancer), as anyone who knows my dad would agree, it's debatable whether or not he was normal to begin with.

Long Days

It's been a combination of the longest days of my life. I went to visit Jana last weekend and that helped to get my mind off things. Dad seems to be in better spirits now that the chemo will be underway tomorrow. I'll be spending every other Thursday in Vermont for a while. Nice to visit my sister more often, just wish it was under better circumstances. I received some amazing flowers from my (and my sister's) friend Sparky. They brighten up my kitchen a little, and my mood some too. I guess I'm just trying to keep my mind off everything and keep busy.

Li'l Sis

Had a wonderful visit with my sister this past weekend. It's the most time we have spent together in quite sometime, and it was awesome to not be with my parents and have that whole 1000 lb gorilla (or whatever that expression is) in the room the entire time.

My dad will be coming to FAHC for treatment every Friday for awhile. He's participating in a clinical trial, and will receiving his chemo weekly for a month, and then on 3 weeks, off one week. I'm excited to see him and my mom more often, but I'm also scared to see how the chemo affects him.

8 times!!

Really? Who wakes up 8 times in one night? I guess it's back to the Ambien. I was hoping since I was a little better the last 2 days that I could sleep on my own. Apparently I was wrong. I never woke up that many times in one night when I was pregnant...

On a brighter note, my mom said my dad walked down to the post office to get the mail yesterday...it's about 1/4 mile walk, so it was good to hear his energy had improved a bit.

Information

If anyone wants more information on pancreatic cancer, pancan.org has a lot of good information, all of which is free. I've already found some of their materials useful.

Reality Bites

So the cancer is Stage IV. We basically knew that because of the lesions on the liver, but it hadn't been made "official." But we had a prognosis. I guess we all had just hoped they were wrong.

Tear-Free Night

I only got a little choked up yesterday, no waterfalls in the evening, as had happened the whole week before. It's the first night in over a week that I didn't cry myself to sleep. Of course, it is the first night that I didn't sleep most of the night straight through. Eh, you win some, you lose some.

My dad had the celiac plexus block and it seemed to go well. I'm curious to see what the evening brought after the anesthetic wore off. I'm sure I'll hear soon enough. The fam drove back to P'dam yesterday after meeting with one of oncologists at FAHC. They squeezed dad in so he wouldn't have to drive back over just for a consult. The doctor's believe my dad would be a good candidate for one of their clinical trials, but it would require weekly trips to FAHC for chemo. Mom and dad are going to noodle it over.

I've realized over the last week I've become a serious space cadet. Forget momnesia, this is a complete lack of focus and ability to concentrate. I feel like my brain is jello. I'm kind of numb and completely unmotivated at work. I'm having to put in more hours just to get stuff done. It's as if I'm working in slow motion. Maybe I am.

Eh, it's Monday

My parents, sister and her boyfriend can over last night so they would be here for my dad's procedure this morning. He's having the celiac plexus block done, which should improve his pain level by a lot. I really hope it works, cuz honestly, he looked pretty miserable last night when he arrived, despite the fentanyl patch he had on. So here's to hoping.

It was nice to see my family. It's the first time we've all been together since his diagnosis. I spent the evening drinking before they arrived, and then Daryl, Justin, Erika, and I went out for a couple of drinks. I was hoping the drinking would dull the pain a little. No dice. I think all it did was make me more weepy. At least I slept well.

TGIF, and I couldn't be more relieved

TGIF. It has been on the the longest weeks of my life, and quite possibly, the longest. I'm looking forward to the weekend when I can let down my my guard and take my game face off; the only people I have to be strong for are my children. I don't have to go to work and pretend that the world is moving at it's normal pace when in fact, for me, it is standing still.

I keep thinking that this is just a bad dream. The sad truth is this nightmare is very real. I read the thoughts by sister posts and it brings me to tears. I guess by the nature of being the oldest child, I was fortunate enough to have found someone special sooner so I had the opportunity to have my daddy walk me down the isle (at which time he did make me cry). He was able to meet all of his grandchildren by me (there will be no more, I promise). He's been able to put them to bed, read them bedtime stories, and tease and joke they way all Papas do with their grandchildren.

Last night Daryl and I sat down with our oldest children to break the news to them. While we certainly hope Papa will be around more than a few more months, we felt we needed to let them at least know Papa was sick. Quite honestly, you can't put anything past my kids; they are too observant for their own good most of the time. And when they see Papa Wednesday night before his Thursday procedure, they will know something isn't right.

We told them about the disease Papa has, how he'll be in pain, get weak, and not be able to eat. Our son said, "but if Papa can't eat, then I won't have a Papa anymore." Pretty much sums it up, doesn't it?

If that won't make a parent cry, I don't know what will. I'm hoping tonight I won't cry myself to sleep again, but I'm not going to bet on it.

Another Sleepless Night

Pancreatic cancer is one of the cancers that are called “silent killers”; meaning that by the time the cancer is discovered, there is little hope. Once it presents, even with treatment it is a fatal, terminal form of cancer. According to Wikipedia, as well as the Mayo Clinic, pancreatic cancer kills about 34,000 people a year. This year or maybe next, it will kill my father. He will not be there to walk me down the isle when I get married and give me away. He will not be there when my children are born, or when they are growing up. They will never get to hear him laugh, and I will never get to hear him laugh again. Our home phone number will show up on my caller id and I will know that it won’t ever be my dad to say hello or to tell me some crazy joke he heard, or ever just to tell me that he loves me. Someday, my whole life will change. Now I’m trying to find comfort in my family and friends and others who have gone though the same loss, like Ash. Some time soon think I want to go get a tattoo on my leg or over my heart that says cancer sucks with a purple ribbon. Anyone in?

My face is a combination of my mother and my father’s. I wonder if it will bother my mother to see it, or my sister. I definitely have his sense of humor; Jana always says I’m good for a laugh, sometimes I even make mom laugh! (And that’s hard to do.) I wish there were some kind of horrible mistake. Or maybe that chemo will fix it, take the disease away instead of the disease taking my dad away. I’m supposed to be a grown up. But I never have been. Another sleepless night of worrying and wondering isn’t doing me any good. Tonight, I wonder if Daryl will walk me down the isle. No one else will be left. This disease took my godfather too. So now who do I turn to in a spiritual and emotional crisis when I feel like I shouldn’t be a burden on the rest of the people that I love? Maybe I’ll set up an appointment with a counselor.

our blog

I'm so glad to see that my sister is posting, too. It's good for me to have the other perspective.

Home again, home again, jiggety jig

Yay, my dad got to go home today. As you can see, lil sis brought him home. Bummer, no History Channel...may have to upgrade the cable. Glad to know the celiac plexus block procedure is scheduled. It also means I get to see my family again sooner than I thought. When I talked to my dad at lunchtime, he said his pain was better than it had been and that he thought he would continue to feel a little better over the next couple of days as the with the now-open bile duct. And at least for now he's off the morphine...just percocet.

Thursday and Counting

I got to bring dad home today! I think he’ll feel better in his own bed. Unfortunately mom’s house doesn’t have the History Channel. Boo! Thursday he has an appointment for his celiac plexus block so we’ll be headed to Burlington Wednesday to spend the night at Jana’s. This should help with the pain. Family and friends have been very supportive, lots of phone calls and facebook messages. It's hard and doesn't seem to be getting any easier. Any ideas?

Wednesday, March 18, 2009

Today we found out the prognosis: 6 months to a year, possibly two if things go very well between now and the dreaded ‘then’. It’s sick to think that I was excited to hear that my father might be with me for 6 months. It’s far better than the 3 months that I was initially told. To add to Jana’s list of near-misses: He was swung into a door case head first playing helicopter with his older brother; fell down a hill and was hit by an oncoming car; had a chimney drop around his ankles; rolled a backhoe down a 30 foot hill with him still in it; fell out of a 25 foot tree. He’s been more than lucky before, I’m hoping just this one last time …

March 17, 2009

Generally, I would spend St. Patty’s day doing something with my dad. This year is the exception. I’m sitting at home pondering every scenario, good and bad; going over statistics that don’t seem to make a lot of sense. The ones that do, I keep hoping don’t apply. This is the first time I’ve ever had to consider my father not being a part of my everyday life. It’s tearing me apart little by little. Sometimes I’m ok, I don’t cry, I don’t dwell. Other times out of nowhere I feel like the air around me is too thick to breathe and I can’t stop thinking about the what if… I’m beginning to feel cheated, along with angry and confused. I think it might be a good thing because it’s keeping me from being quite so broken. Hopefully tomorrow we’ll hear more from the doctor and at least have some sort of plan in place. Right now we’re all just kind of hanging on by a thread with the not knowing, but the possibility of treatment has everyone a little more relaxed. I talked to our dad late this evening. He seems to be in better spirits and more hopeful than before, which makes it easier to talk to him normally. I try to be strong and not cry in front of him, or mom. They don’t need to know how bad this really hurts. I’m trying to put on a strong face.

Prognosis

When I talked to my dad this morning, he had finally gotten an "official" prognosis. The doctor said 6-12 months, maybe as long as 2 years. Not great. But at least we know what we are dealing with.

While I am certainly a realist when it comes to bad stuff like this, I'm also an eternal optimist. By no means do any of us plan to let this take him away without a fight. And for any of you who actually know my dad, you know that beating the odds is something he has always had a knack for. Horse kicks to the face, diving into the shallow end of the swimming hole, multiple car accidents, being struck by lightening; I'm sure there are some others that escape my memory at the moment. So we'll see.

Hump Day

So while I can't say I'm entirely better, I certainly slept better last night than I did the previous few. It's amazing what a fresh perspective you have after a good night's sleep.

Yesterday, friends sent some truly beautiful and comforting messages, which definitely help lift the spirit. We should know more today from the biopsy and the doctors from the two different hospitals should be able to talk to one another. My mom, sister, and I all agree that we would be so much more relieved if we even had so much as appointment scheduled, rather than having my dad sit in the hospital in limbo.

Irony

Every year about this time, the American Cancer Society sells daffodils. Oddly enough, the ones I ordered weeks ago, were delivered today.
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The other thing, specifically related to this type of cancer, is that my uncle died from pancreatic cancer in August 2007. It's unfair for anyone to lose a loved one from cancer. It's unbelievably unfair to know that the disease that took the life of my mom's little brother will likely be what takes my dad away from us.

St. Patrick's Day, 2009

My dad was scheduled for his ERCP surgery this morning. He arrived at FAHC about 830 a.m. He was really jaundiced, but looked better than I expected based on the fact that he has been in the hospital on morphine for the last 4 days. He's lost so much weight over the past few months, but he still looks reasonably healthy considering. We all thought the weight loss was attributed to the Type II diabetes he had.

I brought him the paper. We chatted and he was seemingly his ususal goofy self, minus the IV and the fact that I knew my dad was sick.

The ERCP went as well as can be expected. They inserted a metal stint in the bile duct to keep it open and flowing the way it is supposed to. The tumor at the top of the pancreas is about 3.5 cm in size and there are lesions on the liver, so they don't think surgery is an option (or wouldn't help). They are going to schedule chemo and a nerve block procedure for the pain. That's all we know right now.

Thank you for all your continued thoughts and prayers. I'll updated again when I have more information.

Monday, March 16, 2009

So, waiting and waiting for no new information.

My dad is going to be sent to FAHC for an ERCP (endscopic retrograde cholangiopancreatography). Don't even try to pronounce it. Stick with the acronym. It's an outpatient surgery they do to get a better look at what is going on with the pancreas and surrounding area. It helps to diagnose problems in the liver, gallbladder, bile ducts, and pancreas.

Monday is tough to get through, but I manage. I give my boss et al the head up of my impending leave time needs to be with my family as much as possible.

By the end of the day, I know my dad is scheduled to have the procedure at 9 a.m. Tuesday morning. I plan to be there. While he is having the procedure, I'm going to be working to distract myself. Apparently FAHC is all wi-fi enabled now.

Sunday, March 15, 2009

When my mom left my dad Saturday night, there was still no news about the scans. I knew my dad had been ill and they had given him something to sleep and to help the vomiting. Being considerate to his needs, I waited to call until Sunday a.m.

When I called around 930 a.m., I fully expected to hear my dad was still feeling like bunk, but would be better once they scheduled the surgery to remove the gall stones (which we knew about from the first scans on Friday).

I said, "Hi, Dad. How are you doing?" My dad is such a jokester, I expected a joke about hospital food or lousy beds... not the "Not so good" that I did get from him. He had most certainly be crying...which did not bode well for the news I was about to hear. The doctor had been in early that morning and told my dad he had pancreatic cancer. My dad of course was shocked and scared by the news (as was I). No one else in our family knew yet, so I couldn't even talk to my mom or sister. My dad and I chatted for awhile, he mentioned some statistics he had been told, etc. We finally hung up.

I waited a few hours and called my mom, hoping she had been to the hospital and heard the bad news (not that I was hoping she would hear bacd news; you know what I mean) so we could talk. No dice. She said she hadn't heard any news yet, but hoped to get an updated when she went to see my dad later in the day. I hung up as quickly as I could, knowing I wouldn't be able to hold it together for any length of time.

I called my sister a little bit after that, looking to see if she had been to see dad yet. Negative.

Through the day, this news was eating at me. I was home with the 3 girls and had to be strong to take care of them, and damn, that was hard. Finally my sister called at about 6 pm. The first words out of her mouth were. "You are supposed to tell mewhen you know things." But I couldn't, beacuse it wasn't my place to tell.

Needless to say, Sunday was a REALLY long night. A lot of crying, not much sleeping, even with the last of my diazepam prescription to help.

Friday the 13th

It's funny. I certainly never considered myself to be superstitious. Or certainly not to any real degree. But from this point on, I will not be able to look at Friday the 13th the same way ever again.

I talk to my mom and dad a lot on the phone. Especially my mom. A lot more than probably your average kid. But she's one of my best friends. I'm close to my dad, but I'm definitely closer to my mom, which is funny, because that was not the case when I was younger (think teenage years when girls and moms clash).

On my way home from work, I called my parents house to chat with my mom. I do this often, like, more than a couple of times a week kind of often. I got the answering machine. I tried again later. same deal. Knowing that my parents do have lives, while maybe not very exciting at times, I didn't think much of it. So I called my mom Saturday morning (another fairly common occurrence).

I asked my mom how we night was and how her day was going. This is when i find out my dad is in the hospital. Apparently he had several of the duodenal spasms he and my mom sometimes get, and went to the doctor, who thought it may be something more. CT showed what they thought to be gall stones. And my dad won himself an overnight stay at CPH.

My dad is not a complainer by nature. And being of the male species, is also not one to go to the doctor until near on his death bed. More testing, including a CT scan with contrasting dye, showed certainty of gall stones--and the worst news yet--a tumor on the pancreas, most likely pancreatic cancer.