Sorry, folks, for the delayed posting here. It was a busy weekend. We last left our intrepid patient when she was in the hospital for an infection of unknown origin. Well, she felt pretty good on Saturday afternoon after eating, but she had some roast beef (which was delicious, I have to say), but somewhat greasy and heavy. So, that didn't sit too well with her and she was up all night with a lot of pain in her belly.
Again, to make a long story short, the doctors all came in on Sunday and declared her infection to be gone. Her fever was gone, her white blood cell count was good, etc. Also, her bilirubin levels were normal, indicating that the stent is working just fine. But, she was in pretty bad shape, nutritionally. Remember, she really hadn't eaten well for about a month. Her phosphates and potassium were low, as well as some other things that we all need but don't think much about. The doctors feel that her pain is just an upset stomach that's being introduced to food all of a sudden. So they had her stay in the hospital one more day to keep her hydrated and get her nutrition back in order, then sent her home on Monday with orders to keep eating bland food for a while and slowly build her diet back up. She's also drinking Ensure to get some extra calories. Finally, they gave her some antacids-- Nexium, etc.-- and some more antibiotics to make sure the infection stays gone.
Right now, she's home and eating. She is still rather weak and feeling beaten up after spending so much time in the hospital with the IVs and what-not. Another tidbit: Marye has terrible veins, so every time the have to stick her to give her fluids or take blood, it's a battle for the IV nurse. She would make a terrible heroin junkie, unless she were to smoke it.
Anyway, aside from some acid reflux and a lot of fatigue, she's doing pretty well. We have an appointment with her oncologist on Thursday, so we'll get the treatment plan then. One thing we discussed with her GP was that since she's still pretty weak, it might be better to start radiation instead of chemotherapy right away. That way she'll get some treatment to attack the tumor without the side effects of chemo. It's easy to forget that we're still just treating the symptoms of a severely blocked bile duct, and haven't even addressed the cancer, yet. So, that's a discussion we'll have on Thursday.
Hope everyone is doing well and I'll have an update NLT this Friday.
-Chris
Pages
Background Info
It's been said that I am not an open book. I can live with that. But don't be surprised that I now have a blog. The purpose is to give everyone a place to get the latest on Marye's condition. Also, this way I won't have to make numerous calls to all of Marye's fans to keep everyone updated (she has a lot of fans). Having said that, I'm more than happy to talk to her fans and give any additional information or answer questions to anyone. I just prefer to do that via private phone calls or emails, which is why I'm using this and not a Facebook group.
I'll start by giving the background of what's happened since July 30, 2011, then start with daily updates. Start at the bottom for the whole story.
I will try to update this pageevery day as often as possible with her treatment and status. As I get more familiar with the features, I'll add links and email features, etc. Thanks.
-Chris
I'll start by giving the background of what's happened since July 30, 2011, then start with daily updates. Start at the bottom for the whole story.
I will try to update this page
-Chris
Tuesday, August 30, 2011
Saturday, August 27, 2011
Wrong again...
So, I need to stop trying to diagnose Marye when she has various symptoms. In my last post, I knew she was sick, but I thought that her symptoms were from a stomach virus. This is why I'm not a doctor. I took her to the hospital with a 102.6 degree fever and vomitting. When we got to the ER, her heart rate was racing-- 150 bpm. So they hooked her up to the EKG and found her heart was ok (no heart attack), but they were worried about it and her fever. She was also very dehydrated and her white blood cell count was slightly elevated.
To make a long story short, she has the symptoms of an infection, but they don't know where it is. The theory is that the stent is either irritated or infected. Against her wishes, they admitted her to the ICU to keep her on fluids and antibiotics. On Friday morning, her GP came in and was talking about doing another ERCP to look at the stent. Well, I figured that Dr. Vitale put the stent in, and he's the expert in the biliary tract, so I told the GP that Marye should probably go back to Norton Hospital. He agreed.
Friday night, she was transferred to Norton and Dr. Vitale and his minions all came in to check on her. I was impressed that they were there so late. Anyway, they said that they'll continue to treat her for an infection of unknown origin and it they can avoid going back down her throat, they will. But if she doesn't improve, they'll go back in and check her out. If the stent gets infected, that's considered an emergency, so they'll do it even if it's the weekend. One good piece of news: her bilirubin (bile levels) are down, so the stent is still allowing the ducts to drain.
So, as of Saturday, 1:30 pm, she's resting at Norton. I talked to her this morning and she ate some lunch and is feeling a little better. Maybe the antibiotics are working. Oh yeah, Marye's mother Doris came up from Nashville yesterday, and I took her over to see Marye. Doris has been really worried since this whole thing started, so I asked her to come up for a few days.
Anyway, I'll be checking in with Marye here in a little while. I don't know when she'll be discharged. I'm sure the doctors want to see her infection symptoms go away and see if her appetite will hold up. I'll keep updating this when I learn something new and get a little time.
-Chris
To make a long story short, she has the symptoms of an infection, but they don't know where it is. The theory is that the stent is either irritated or infected. Against her wishes, they admitted her to the ICU to keep her on fluids and antibiotics. On Friday morning, her GP came in and was talking about doing another ERCP to look at the stent. Well, I figured that Dr. Vitale put the stent in, and he's the expert in the biliary tract, so I told the GP that Marye should probably go back to Norton Hospital. He agreed.
Friday night, she was transferred to Norton and Dr. Vitale and his minions all came in to check on her. I was impressed that they were there so late. Anyway, they said that they'll continue to treat her for an infection of unknown origin and it they can avoid going back down her throat, they will. But if she doesn't improve, they'll go back in and check her out. If the stent gets infected, that's considered an emergency, so they'll do it even if it's the weekend. One good piece of news: her bilirubin (bile levels) are down, so the stent is still allowing the ducts to drain.
So, as of Saturday, 1:30 pm, she's resting at Norton. I talked to her this morning and she ate some lunch and is feeling a little better. Maybe the antibiotics are working. Oh yeah, Marye's mother Doris came up from Nashville yesterday, and I took her over to see Marye. Doris has been really worried since this whole thing started, so I asked her to come up for a few days.
Anyway, I'll be checking in with Marye here in a little while. I don't know when she'll be discharged. I'm sure the doctors want to see her infection symptoms go away and see if her appetite will hold up. I'll keep updating this when I learn something new and get a little time.
-Chris
Thursday, August 25, 2011
One step forward, two back
So, for the last few days, Marye's been feeing a little bit better each day. We think the pancreatitis is easing, she's not jaundiced (so the bile duct stent is doing it's job), and she's been able to eat a little bit more, as long as it's in small portions and low in fat. I made a couple of Cornish game hens this week and she's been nibbling on the leftovers (dry white meat).
Well, today she wakes up with severe chills and nausea. She's been throwing up pretty consistantly and I'm seriously getting ready to call the doctor to have her admitted if she keeps it up. Damn. I gave her a Phenergan for the nausea, and she threw it right up. Due to her chills, I'm thinking this may be a stomach virus or flu or something. But I'm watching her closely and trying to get her to get something down.
More bad news: Marye's oncologist is out of town at a conference until next week, so we have an appointment on Thursday, Sep. 1. It's frustrating to have to wait, but really, the only thing we were going to talk to her about was a chemo treatment plan, and Marye's in no shape to start chemo now, anyway. So we wait. I'll give her a few more hours of puking before I call the doctor. I did manage to get a prescription for Nexium, so maybe that will ease her stomach some.
Sorry for the sad news, but I haven't updated in a few days and wanted to keep everyone up-to-date.
-Chris
Well, today she wakes up with severe chills and nausea. She's been throwing up pretty consistantly and I'm seriously getting ready to call the doctor to have her admitted if she keeps it up. Damn. I gave her a Phenergan for the nausea, and she threw it right up. Due to her chills, I'm thinking this may be a stomach virus or flu or something. But I'm watching her closely and trying to get her to get something down.
More bad news: Marye's oncologist is out of town at a conference until next week, so we have an appointment on Thursday, Sep. 1. It's frustrating to have to wait, but really, the only thing we were going to talk to her about was a chemo treatment plan, and Marye's in no shape to start chemo now, anyway. So we wait. I'll give her a few more hours of puking before I call the doctor. I did manage to get a prescription for Nexium, so maybe that will ease her stomach some.
Sorry for the sad news, but I haven't updated in a few days and wanted to keep everyone up-to-date.
-Chris
Monday, August 22, 2011
Dr. Martin
We got the results of the PET scan today. Aside from the mass in the liver and some surrounding lymph nodes that we already knew about, there are no other masses or areas of concern throughout the body. Dr. Martin is not recommending surgery, but will send Marye to her breast cancer oncologist to figure out what the best chemo treatment is, then start that. He said expect about 2-3 months of chemo before we even talk again about surgery. So, basically... nothing new.
As far as her condition goes, she is still having quite a bit of pain in her abdomen, and she's very weak. That makes sense since she hasn't had a good meal in more than two weeks. She's also lost about 10 lbs., but that's due to not eating and not the cancer. The doc says the pain is from pancreatitis and possibly stomach gastritis, so he will prescribe Nexium or something, and she should take some Mylanta or Maalox. Also, he wants her to start getting more calories, so I'm off to the store to get some cans of Ensure. She can eat (or drink) anything soft and low-fat. The pancreatitis should be easing up soon.
We're expecting an appointment with Dr. Riley, her oncologist, this week. After that, we should have an idea of what kind of chemo to expect. It's complicated, since they have to see what she has had in the past. Due to the toxicity of certain medications, there is a lifetime limit on how much a person can get. I love chemotherapy: the idea is to poison the cancer tumor and kill it just a little bit faster than the chemo will poison and kill the whole body.
Ok, that's it for now. I'll keep posting on how she's feeling and such. Thanks to everyone for all the kind words we've gotten. Marye would love to talk to you all, but she's just feeling lousy all time.
-Chris
As far as her condition goes, she is still having quite a bit of pain in her abdomen, and she's very weak. That makes sense since she hasn't had a good meal in more than two weeks. She's also lost about 10 lbs., but that's due to not eating and not the cancer. The doc says the pain is from pancreatitis and possibly stomach gastritis, so he will prescribe Nexium or something, and she should take some Mylanta or Maalox. Also, he wants her to start getting more calories, so I'm off to the store to get some cans of Ensure. She can eat (or drink) anything soft and low-fat. The pancreatitis should be easing up soon.
We're expecting an appointment with Dr. Riley, her oncologist, this week. After that, we should have an idea of what kind of chemo to expect. It's complicated, since they have to see what she has had in the past. Due to the toxicity of certain medications, there is a lifetime limit on how much a person can get. I love chemotherapy: the idea is to poison the cancer tumor and kill it just a little bit faster than the chemo will poison and kill the whole body.
Ok, that's it for now. I'll keep posting on how she's feeling and such. Thanks to everyone for all the kind words we've gotten. Marye would love to talk to you all, but she's just feeling lousy all time.
-Chris
Saturday, August 20, 2011
PET Scan
Ok, today we went back to Norton Hospital in Louisville where Marye got a PET scan. This will tell the doctors if there are any other tumors anywhere in her body. We have an appointment on Monday morning with Dr. Martin, where we should get the results of today's scan and get the treatment plan. Until then, Marye is home and trying to eat some. She's still not feeling well, so I hope that changes. Next update will probably be on Monday, August 22, 2011.
-Chris
The Beginning
On Saturday, July 30, 2011, Marye woke up with some indigestion. She was exposed to a stomach virus, so she thought that was her problem. Her symptoms were some mild nausea (she did throw up) and a persistent knot in her abdomen. Again, she thought it was a virus. After about a week, she finally decided to go to the doctor to see if she could get some relief from the symptoms. Also, we thought maybe she had the H. Pylori virus that causes ulcers.
So on Sunday, 7 August, 2011, she went to the local clinic. The doc started some tests, including liver tests, and noticed that she was jaundiced. I didn't notice that. The blood work indicated that her liver funcion was bad, and the jaundice indicated that she had a blockage of bile. The doctor thought it was gallstones and admitted her to Clark Memorial Hospital in Jeffersonville, IN. So she was in the hospital.
Over the course of the next 24 hours, she got a CT scan and more blood work done. The initial CT scan indicated that there was a "sludge" in her gallbladder that was blocking the bile duct. This made sense, given her symptoms, and we were thinking a laparascopic procedure to remove the gallbladder.
However, on Monday, the doctors told us that the CT scan actually showed a large (8 cm) mass on or in her liver. This what was likely causing the bile duct blockage and her discomfort. So the plan was to perform an ERCP to try to place a stent in the bile duct and allow the bile to drain. Unfortunately, the ERCP was unsuccessful, as the doctor was unable to get even a wire-- let alone the stent-- into the severely blocked duct. Her discomfort continued. In fact, it got worse, as the ERCP likely caused a bout of pancreatitis by irritating the pancreas.
On Wednesday, she got a needle biopsy done on the liver mass, and the doctors said that the tumor markers were high, indicating that it was malignent. This is when I first heard the term cholangiocarcinoma-- bile duct cancer. And after doing some research, we were distressed to discover that it is a very aggressive cancer that has a very poor prognosis due to the advanced stage at which it is first diagnosed.
Ok, so she was pretty sick through the week, and we were waiting for the pathology reports. But they released her from the hospital on Friday, and the doctors were pretty confident that it was cholangiocarcinoma. End of Week 1
On Monday, August 15, 2011, we got a call from the Brown Cancer Center in Louisville and she had an appointment that afternoon. At the same time, Marye's cousin, Barbara Jean, was northbound to come see how Marye was doing. Well, Barbara Jean arrived and we all headed to Louisville where we met Dr. Martin, who convinced us that he is the right guy to treat this cancer. Seriously, check out his resume.. Also, Dr. Martin was very confident that his partner, Dr. Vitale, would be able to successfully place the stent during another ERCP. After some more research, I see that these two guys have been working together on this very condition since at least 2000, so we're thinking that we're in the right place to treat this cancer.
So, the plan is to get a whole new set of CT scans and blood tests to determine exactly what kind of cancer this is. He was very confident that it was cholangiocarcinoma, and the only treatment is to shrink the tumor with chemo, if necessary, then surgery to resect the liver and tumor. On Tuesday, she got the CT scan and bloodwork, and we went home. On Wednesday, after some back-and-forth with Dr. Vitale's office, she had the ERCP and he was able to insert the stent into the common bile duct. It was late at this point, so he admitted her into Norton Hospital in Louisville. Anyway, I was expecting some kind of miracle as far as her discomfort was concerned, so I was very distressed to find that it can take 48-72 hours for the irritation to subside. No such luck. She was sick all day Thursday and Friday, with elevated liver enzymes. However, on Friday evening, the liver numbers looked better and Dr. Vitale discharged her. She still feels lousy, but we're hoping that that will change in the next day or so.
In the meantime, the final pathology reports came in and -- surprise-- it's not cholangiocarcinoma at all, but metastatic breast cancer. Oof. So, here's the deal. On the one hand, this is good, since breast cancer, even metastatic, is much easier to treat than the rare and aggressive cholangiocarcinoma. On the other hand, cancer that has spread to the liver is scary. (Where else has it spread to?) And in any event, the size of the tumor is still troublesome. However, Dr. Martin says that no matter what the type of tumor it is, it's more the location (interhepatic) that will make this tricky.
So the plan is to get a PET scan on Saturday, August 20, 2011, to see if there are any other tumors. That will determine the treatment plan. If there is no more cancer, then we're anticipating chemotherapy to shrink the tumor in her liver before they try a resection. If there is more cancer, then I don't know what will happen. We have an appointment with Dr. Martin (the surgical oncologist) on Monday morning.
Current status: as of Friday evening, August 19, 2011, Marye is home and in bed. She is still having a hard time eating and has a lot of pain in her abdomen. The PET scan is tomorrow, and I'll post an update after that.
Sorry this post is so long, but I want everyone to know how she's doing and what's been happening. Future posts will be more regular and shorter, and hopefully more positive.
So on Sunday, 7 August, 2011, she went to the local clinic. The doc started some tests, including liver tests, and noticed that she was jaundiced. I didn't notice that. The blood work indicated that her liver funcion was bad, and the jaundice indicated that she had a blockage of bile. The doctor thought it was gallstones and admitted her to Clark Memorial Hospital in Jeffersonville, IN. So she was in the hospital.
Over the course of the next 24 hours, she got a CT scan and more blood work done. The initial CT scan indicated that there was a "sludge" in her gallbladder that was blocking the bile duct. This made sense, given her symptoms, and we were thinking a laparascopic procedure to remove the gallbladder.
However, on Monday, the doctors told us that the CT scan actually showed a large (8 cm) mass on or in her liver. This what was likely causing the bile duct blockage and her discomfort. So the plan was to perform an ERCP to try to place a stent in the bile duct and allow the bile to drain. Unfortunately, the ERCP was unsuccessful, as the doctor was unable to get even a wire-- let alone the stent-- into the severely blocked duct. Her discomfort continued. In fact, it got worse, as the ERCP likely caused a bout of pancreatitis by irritating the pancreas.
On Wednesday, she got a needle biopsy done on the liver mass, and the doctors said that the tumor markers were high, indicating that it was malignent. This is when I first heard the term cholangiocarcinoma-- bile duct cancer. And after doing some research, we were distressed to discover that it is a very aggressive cancer that has a very poor prognosis due to the advanced stage at which it is first diagnosed.
Ok, so she was pretty sick through the week, and we were waiting for the pathology reports. But they released her from the hospital on Friday, and the doctors were pretty confident that it was cholangiocarcinoma. End of Week 1
On Monday, August 15, 2011, we got a call from the Brown Cancer Center in Louisville and she had an appointment that afternoon. At the same time, Marye's cousin, Barbara Jean, was northbound to come see how Marye was doing. Well, Barbara Jean arrived and we all headed to Louisville where we met Dr. Martin, who convinced us that he is the right guy to treat this cancer. Seriously, check out his resume.. Also, Dr. Martin was very confident that his partner, Dr. Vitale, would be able to successfully place the stent during another ERCP. After some more research, I see that these two guys have been working together on this very condition since at least 2000, so we're thinking that we're in the right place to treat this cancer.
So, the plan is to get a whole new set of CT scans and blood tests to determine exactly what kind of cancer this is. He was very confident that it was cholangiocarcinoma, and the only treatment is to shrink the tumor with chemo, if necessary, then surgery to resect the liver and tumor. On Tuesday, she got the CT scan and bloodwork, and we went home. On Wednesday, after some back-and-forth with Dr. Vitale's office, she had the ERCP and he was able to insert the stent into the common bile duct. It was late at this point, so he admitted her into Norton Hospital in Louisville. Anyway, I was expecting some kind of miracle as far as her discomfort was concerned, so I was very distressed to find that it can take 48-72 hours for the irritation to subside. No such luck. She was sick all day Thursday and Friday, with elevated liver enzymes. However, on Friday evening, the liver numbers looked better and Dr. Vitale discharged her. She still feels lousy, but we're hoping that that will change in the next day or so.
In the meantime, the final pathology reports came in and -- surprise-- it's not cholangiocarcinoma at all, but metastatic breast cancer. Oof. So, here's the deal. On the one hand, this is good, since breast cancer, even metastatic, is much easier to treat than the rare and aggressive cholangiocarcinoma. On the other hand, cancer that has spread to the liver is scary. (Where else has it spread to?) And in any event, the size of the tumor is still troublesome. However, Dr. Martin says that no matter what the type of tumor it is, it's more the location (interhepatic) that will make this tricky.
So the plan is to get a PET scan on Saturday, August 20, 2011, to see if there are any other tumors. That will determine the treatment plan. If there is no more cancer, then we're anticipating chemotherapy to shrink the tumor in her liver before they try a resection. If there is more cancer, then I don't know what will happen. We have an appointment with Dr. Martin (the surgical oncologist) on Monday morning.
Current status: as of Friday evening, August 19, 2011, Marye is home and in bed. She is still having a hard time eating and has a lot of pain in her abdomen. The PET scan is tomorrow, and I'll post an update after that.
Sorry this post is so long, but I want everyone to know how she's doing and what's been happening. Future posts will be more regular and shorter, and hopefully more positive.
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| Barbara Jean |
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