Tag: pancreatic cancer

Better late than never

I can’t believe it’s been nearly a year since I’ve written here.

2010 has been a very difficult year, and I’m fairly glad to see it on its way out. It’s mostly been health issues – one on top of the next – that have made it so tough.

The good news is that Dad is still with us. He beat Pancreatic Cancer.

Wait. Let me say that bigger and louder. MY DAD SURVIVED PANCREATIC CANCER. He has NO evidence of the disease, and is in the “1% Club.” Someday it will come back, but at this time, he is cancer free. That’s the best you can ever hope for with PanCan.

The treatment was horrendous, and he ended up in the hospital a couple of times, but he fought and he won. He officially got a clean bill of health in about September after a 6-week intensive course of 24/7 chemo via a pump, plus daily radiation, plus weekly “big” chemo. This was after an entire year of weekly chemo. He was beaten down, they took him to within inches of death, and brought him back.

What was equally amazing were the number of people who helped. I put out a message on a local news site and asked for volunteer drivers to help him to get to/from treatment daily (30 minutes from home for a 5 minute radiation appt!) and we had dozens of volunteers. Had to weed out a few weirdos, but not too many.

And now, he’s just gotten his first haircut. He’s almost good as new – still has to limit certain types of foods, as his stomach can no longer digest them. He’s got a bit of digestive damage from all the treatment, but it’s better than the alternative. So we’re very thankful.

I’m just now getting over the worst stomach bug of my life. 7 days of nonstop vomiting and diarrhea that only stopped for a few hours at a time when I went in to the ER or to see my doctor and got injections and IV fluids. It began much like a foodborne illness: Severe GI pain up high in my stomach (under the ribs) and then nonstop vomiting with diarrhea. The number of times I couldn’t deal with both ends at the same time were absolutely humiliating. By the end I simply wanted to die. I finally started to pray as I was throwing up one of the last times “Please make this go away – I can’t live through another day or more of it.” Something worked, because it finally stopped on Thursday afternoon. I had to wait 48 hours to eat, meaning it had been well over 2 weeks of nothing but pedialyte and jello when I began to try solids again. Holy COW I was hungry. I lost 20+ pounds in that week, and I’m just lucky I had it to lose.

Anyway, that’s all the health stuff. Tomorrow is my first day back to work after being so sick, and I’m hoping I have the strength to make it through the day. I’m still physically very weak and can’t walk super far. But I’ll manage. 🙂

More updates on everything else later.If I still have any readers left. Sorry I abandoned you all. I didn’t mean to — life just went sideways for a bit. I’m back now, though, and will get to writing again shortly.

xoxo

Aim

 

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Grief

Grief is an odd process.

The concept of “stages of grief” was introduced by Elisabeth Kübler-Ross in her 1969 book, On Death and Dying: denial, anger, bargaining, depression, acceptance.

What is interesting is the anger. It’s not just the obvious anger at the loss, the world, etc.

I’ve been experiencing a totally different anger. It comes out when well-meaning friends say things like, “I totally know how you feel because my <parent/friend/relation/favorite barista/whatever> had chemo for <insert type of cancer here that’s got a near-100% cure rate>.” I find myself shutting down, because my first inclination is to scream in their faces, “NO, YOU DON’T UNDERSTAND!”

Pancreatic Cancer is such a different animal from most other cancers. Unlike most cancers, there’s really not much hope of beating it. There is about a 99% chance that it will kill my dad. It’s just a matter of how long we have left with him. If I try to talk about how it feels to be on limited time, people say, “think positive, don’t say that!” It feels like they’re encouraging me to be in denial for THEIR comfort. It feels like most people don’t want to understand. It’s too scary to think of our mortality.

I know people mean well. I know they don’t really know what to say. Sometimes, the best thing to say is “how are you doing?” But only if you mean it, and are willing to hear the answer. Just STFU and just listen. No need to say you’re sorry, or try to comfort. Just asking is enough.

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Merry Christmas, etc.

My father got out of the hospital on the 26th of December.

I spent Christmas Day at his bedside. The first couple of hours were just him and me, which was really nice. We sat in silence some, and then when he had the energy to talk, we talked for a few sentences, and then silence again. He said he really enjoyed that a lot.

My mom, my brother and his girlfriend came by a little later, and we traipsed down to the hospital cafeteria for some Christmas Lunch. They had ham, cheese ravioli and sloppy joes. We each got our choice, and we brought back two extras – one for Dad and one for my husband who was home with a cold. We had lunch in Dad’s room, and then some old family friends showed up with a really special gift.

The family friend is a collector of antiques. Dad was at her house once about 20 years ago and was surprised to see an exact duplicate of his grandmother’s unusual depression glass vase on the mantle. The friend gave it to him now, 20 years later, and it was such a perfect gift. He absolutely loved it.

We ended up celebrating Christmas for real on the 27th. We had soup and salad, and gifts. It was nice to not do the big turkey meal, as it allowed us to spend the day visiting rather than cooking. Lots of great gifts were exchanged, and a good time was had by all. I even managed to pull off some really neat surprises.

Dad’s home, and exhausted. He can’t make it up the stairs to the bedroom yet, so he’s sleeping in a recliner. He’s got 4-6 weeks of IV antibiotics to complete, and then they’ll talk about whether to do more chemo, radiation, or what. I’m just glad he fought his way through this setback. It was really scary for a few days there.

Hope you all had a good holiday.

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Grim Reaper defeated – for now.

Dad’s doing MUCH better as of last evening. He might get out of the hospital today. If not, it will be tomorrow. They found the source of the infection – a stent they’d put into his bile duct back when he was diagnosed with cancer in July. They were able to remove it, along with a huge pocket of infection. He’ll likely be on 4-6 weeks of antibiotic infusions, and then he may or may not have to do another round of chemo when he’s strong enough. We shall see.

Still taking it all day by day, but death is no longer imminent, so that’s huge.

Thank you all for your thoughts, wishes, prayers. I really think they’ve helped.

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When an abscess is a good thing…

It’s a liver abscess causing the trouble. They’ll keep him in the hospital til probably Wednesday. But he’s doing MUCH better, and this is something they can treat. He’s at Virginia Mason now, so getting good care from a team who knows what they’re doing — including his oncologist, who visited him today.

I spoke to him on the phone this afternoon, and he sounds fairly chipper. They moved him out of ICU and into the Oncology ward, which is great news. He asked me to smuggle in a cookie for him as soon as I’m well enough to visit. 🙂

So, the abscess. They’ve got him under anesthesia right now in order to put yet another port in his body – this one with a vacuum seal on it so that it is constantly draining the abscess in an attempt to collapse it. IV antibiotics are hitting it hard from another angle. He may beat the cancer yet. We’re taking it day by day at this point, and today’s a good day.

Thank you all for the prayers. Please keep them coming, as an abscess is nothing to sneeze at, and he’s still a very sick man. But he’s not in imminent danger of death.

Love and Merry Christmas to you all

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Eff Cancer

My dad is in the hospital. He’s been battling Pancreatic Cancer since July. Until last week it was looking like he’d beaten all the odds, and that he might just beat it entirely.

Then he was diagnosed with pneumonia last week.

Now there are spots on his lungs and liver in the latest CT scan from Thursday. They didn’t know whether it was metastases or just pockets of infection from the pneumonia and were going to do a biopsy on Monday. Well, last night his vitals dropped severely at home, and Mom had to call 911. He was too unstable to go to his usual hospital in Seattle, so they kept him near home 30 min outside of Seattle. He’s in the Critical Care Unit, and will be transferred to his regular hospital today sometime.

At this point it’s all very up in the air. They diagnosed him with sepsis, and have been giving him hardcore IV antibiotics. He’s feeling well enough to tease the nurses, which is good. The day he stops joking around is the day we REALLY need to worry.

In the meantime, he’s still in very serious condition. I have had a cold all week and can’t even go see him, or be there to support Mom (as she could transfer my germs) which makes it all the harder.

Will you all kick the prayers/candles/good energy into highest gear? We could use a Christmas Miracle.

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The Cost of Cancer

There’s something nobody talks about when it comes to cancer — the cost.

My Dad’s cancer treatment costs approximately $12k-15k PER WEEK. He is looking at a minimum of one year of this intensive type of care, and then if all goes well it might drop down to the neighborhood of $5k a week for the rest of his life.

Even with good insurance, there is a $2500 deductible once a year (twice this year as the office changed insurance companies mid-stream) and an out of pocket maximum somewhere in the neighborhood of $2 million. But in between, the insurance covers only 80% of his costs. Chemo is $10k per treatment (once a week) and then there are CT scans, specialist visits, very specialized blood tests, and multiple surgeries. In all, my parents are looking at around $60k per month, or three quarters of a million dollars this year alone. Insurance pays 80% of that, which leaves them with $150k to pay out of pocket every year. I know very few people who make that kind of money. And as they are both employed, they do not qualify for ANY assistance.

I now understand why people divorce in order to allow the non-sick partner to keep the home and not be saddled with insurmountable medical bills after the other partner’s death.

This system is ridiculous, and certainly not very “focused on the family.”

If you want to help them, there’s a Paypal link below.

PayPal - The safer, easier way to pay online!

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Dad’s Journey, continued.

After my long hiatus, I’m going to try to catch you all up on what’s been going on. Definitely it’s been a LOT, and again I apologize for being gone so long!

So in mid-July, we got the news after an exploratory laparoscopy that the tumor was indeed Pancreatic Cancer. In addition, it was adenocarcinoma, which is the most fast-moving, aggressive form of what’s commonly known to be a 100% fatal cancer. Most people receive a Pancreatic Cancer diagnosis and have weeks or months to live. This is mostly because it is a very silent cancer, and really doesn’t produce symptoms, other than some general fatigue, until it’s metastasized into other organs.

Fortunately, the location of dad’s tumor was at the end of the pancreas, and was donut-shaped, wrapped around the main artery as well as the ducts that carry bile and insulin between the pancreas and the rest of the body. Apparently he has an abnormality in where the artery is located. In most people the artery would be nowhere near this location, and the tumor would be operable. In him, it was quickly determined to be much too dangerous to try to operate. The tumor was squeezing the artery and the ducts closed. While he was producing insulin, it wasn’t getting out into his body, so he had severe diabetic symptoms.

Backing up a little bit, for about two weeks he was drinking a gallon a day of very sugary juices because he was craving them so badly. This caused his blood sugar level to spike up over 600 – normal is just under 100 or thereabouts. So he felt like utter hell, and was also beginning to look a bit jaundiced (we later found out this was due to the backup of bile.) Mom got him in to see the doctor right away, and they instantly knew something much more serious was going on and ordered a CT scan. This was when they found the tumor and prepared us for the worst.

My parents are lucky enough to live near Virginia Mason Medical Center, where some of the most advanced Pancreatic Cancer research is currently happening. They decided that they’d be insane not to take advantage of it, as VMMC was showing 95% one-year survival rates, and around 10% 5 year survival rates. This is DOUBLE what anyone else in the US is getting for results.

We’ve had a number of ups and downs – good bloodwork one week, bad the next. Thinking it was maybe not the aggressive sort of tumor, and then being told by the doctors that they just hadn’t been able to biopsy inside it due to the small size and difficult location. Finally, the news that it was the aggressive kind, and he’d have to start chemo immediately. So toward the end of July he started chemo. He’s on once a week treatment with the Gemcitabine & Docetaxel protocol that Virginia Mason is using with such good results. He has had chemo two weeks, off one week, rinse repeat for coming up on three months now.

At two months, they did bloodwork. His original CA-19 marker was at 1400 when he was diagnosed. It’s now down to 60. This is a really good predictor of long term outcome. Apparently with that dramatic a reaction to the chemo, that quickly, he is pushing himself into those very small numbers of people who make it. And a couple of weeks later, last week, he had another CT scan. They can no longer see the tumor on CT. It’s shrunken that much.

The plan now is to keep on doing what they’ve been doing, at least through December for a total of about 6 months. Then for another six months they will POSSIBLY cut down the amount of chemo, depending on hos he’s doing. If all continues to go well, they’ll hit it with a hard dose of radiation in May, and see where we end up.

So that’s the deal.

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My Absence Explained

Sorry for my long absence. There’s a lot going on.
First, L’s surgery went beautifully. I documented it all in Word, and will eventually post it here, back-dated, so you can read it “as it happened” so to speak.

The current stuff is not good news.
My Dad is sick. He has a tumor in his pancreas. Chances are VERY high that it’s malignant. It’s blocking the duct, and there’s a second spot in the body of the pancreas as well. Surgical consult is Wednesday and my understanding is they’ll go in pretty much immediately if it’s operable. He’ll be treated at Virginia Mason, where there is a Pancreatic Cancer specialty program that has a 55% 5 year survival rate. Anywhere else it’s 5%. He’s “under” right this moment, undergoing an endoscopic ultrasound in order to stage it. It looks like Stage 1 from the CT scans, but we’ll know more in about an hour.

The good news is that each tumor is only 1.5cm in size, and they’re not usually found until they’re about five times that. He had cut out soda and cookies and started walking, and had lost 60 pounds. About 2 weeks ago he started craving fruit juice, and was drinking over a gallon a day. Since the duct is blocked he isn’t getting any insulin, so his blood sugar was well over 500 and it made him really sick right away. His cholesterol was also off the charts and potassium was really high as well. He was terribly jaundiced, and generally felt awful.

Thank God he gave in to those juice cravings and made himself so very sick so fast. It means he has a higher chance that he’ll survive this.

Keep him in your prayers please. The surgery will have some tough consequences either way.

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