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.