Terry did another liter of infusion. They did another blood panel - PICC lines are easy to access, so no pain.
He's better - numbers reversing themselves - he just has to take care of himself.
We had Chinese for dinner - when Terry and Krista went out to get food, the phone rang, I was dozing on the couch, leaped up and fell over Krista's book bag - I don't know if I sprained my finger or broke it - we'll see.
Wednesday, September 30, 2009
Tuesday, September 29, 2009
Additional infusion
Terry had a 1 liter infusion at the U between radiation treatments. Hopefully, his kidneys are feeling well-treated, and ready to face cisplatin!
Tomorrow he is half-way through radiation therapy, and he has had 2 of 4 chemos.
This is going good and fast.
Tomorrow he is half-way through radiation therapy, and he has had 2 of 4 chemos.
This is going good and fast.
Monday, September 28, 2009
Well, 1st chemo wasn't SO good...
Well, the story I was telling in the first few posts happened in July and August. We are now in September, and Terry is in treatment. I'll fill in the blanks as we go along.
One of the reasons that we chose the U of M is that they use a three-pronged chemo attack to support the radiation that is wiping out the cancer cells in his esophagus. Currently, Terry is wearing a continuous infusion pump slowing dripping 5FU into his body. The pump runs at a rate of about 1.2 ml per hour. The pump is attached to a PICC line, which can also be used for blood draws and the infusion of his regular chemotherapy. This is a good thing, because it's kinder to his veins. Fewer needlesticks = happier patients. Last week, he received an infusion of Cisplatin and an infusion of Taxol, along with medications to keep him from being nauseated and vomiting. The last thing that poor esophagus needs is a bad case of reverse peristalsis.
Before patients go in for the seond infusion, the chemotherapy staff check all blood levels, to see how the patient is handling the chemo. They are particularly watching Terry's kidneys, as he has a rather high creatinine level - the last thing they want to do is to wreck his kidneys. Dialysis is not fun, I understand.
His creatinine came back slightly elevated, but they are really concerned about his BUN
http://www.labtestsonline.org/understanding/analytes/bun/test.html
levels. So, they decided no cisplatin for this treatment - we are BUNNED. He is having extra fluids to really hydrate his body, and they will check his blood chemistries for the next two days, and hydrate him more.
If his levels go back to normal, cisplatin will be back on the table. Keep your fingers crossed!
He got his taxol.
I had packed a picnic for chemo - between his hydration and his infusions, we were in the chemo room over 5 hours the first time. This time, we were only there about 3 hours - but we did have time to eat - tuna fish sandwiches, V-8 juice, grapes, crackers with cheese, crackers with peanut butter. I felt like I was a cheerleader for healthy foods!
I did ask for the oncology dietician to come down and talk to us - Nancy was very nice, and gave us a detailed prescription for his food - we're doing pretty well - Terry needs to be sure that he eats regular small meals to keep his blood sugar level, and drink about 100 oz of water daily, and a specified level of protein. Getting his food good will help get his kidneys good.
The nurse practitioner (Heidi) points out that the purpose of the chemotherapy is to make the radiation more effective. I know that's true, but I also know that the drugs also help to kill any stray cells that might have escaped.
So tomorrow is hydration, and blood draws. Wednesday is hydration and blood draws.
One of the reasons that we chose the U of M is that they use a three-pronged chemo attack to support the radiation that is wiping out the cancer cells in his esophagus. Currently, Terry is wearing a continuous infusion pump slowing dripping 5FU into his body. The pump runs at a rate of about 1.2 ml per hour. The pump is attached to a PICC line, which can also be used for blood draws and the infusion of his regular chemotherapy. This is a good thing, because it's kinder to his veins. Fewer needlesticks = happier patients. Last week, he received an infusion of Cisplatin and an infusion of Taxol, along with medications to keep him from being nauseated and vomiting. The last thing that poor esophagus needs is a bad case of reverse peristalsis.
Before patients go in for the seond infusion, the chemotherapy staff check all blood levels, to see how the patient is handling the chemo. They are particularly watching Terry's kidneys, as he has a rather high creatinine level - the last thing they want to do is to wreck his kidneys. Dialysis is not fun, I understand.
His creatinine came back slightly elevated, but they are really concerned about his BUN
http://www.labtestsonline.org/understanding/analytes/bun/test.html
levels. So, they decided no cisplatin for this treatment - we are BUNNED. He is having extra fluids to really hydrate his body, and they will check his blood chemistries for the next two days, and hydrate him more.
If his levels go back to normal, cisplatin will be back on the table. Keep your fingers crossed!
He got his taxol.
I had packed a picnic for chemo - between his hydration and his infusions, we were in the chemo room over 5 hours the first time. This time, we were only there about 3 hours - but we did have time to eat - tuna fish sandwiches, V-8 juice, grapes, crackers with cheese, crackers with peanut butter. I felt like I was a cheerleader for healthy foods!
I did ask for the oncology dietician to come down and talk to us - Nancy was very nice, and gave us a detailed prescription for his food - we're doing pretty well - Terry needs to be sure that he eats regular small meals to keep his blood sugar level, and drink about 100 oz of water daily, and a specified level of protein. Getting his food good will help get his kidneys good.
The nurse practitioner (Heidi) points out that the purpose of the chemotherapy is to make the radiation more effective. I know that's true, but I also know that the drugs also help to kill any stray cells that might have escaped.
So tomorrow is hydration, and blood draws. Wednesday is hydration and blood draws.
Sunday, September 27, 2009
Chemo # 2 tomorrow
DH has his second chemo treatment tomorrow - Krista is coming with us. She really wants to understand what is going on.
First one went so well, no SEs at all.
Terry worked today, and is tired like always.
First one went so well, no SEs at all.
Terry worked today, and is tired like always.
Meeting the Surgeon
Well, eventually, even surgeons have to get back from vacation. We were scheduled for the first appointment of the day - 8AM. We were there on time. The receptionist said hello, and nothing else. We sat for an hour and a half.
A PA came out and escorted us into a room - we sat for 15 minutes. No one said a word.
I asked where the rest room was - On the way back, I asked the receptionist why they were running so late - oh, we had an emergency, she said. Oh, I said, and we weren't entitled to that piece of information? Was their any special reason why they were so incredibly thoughtless? PA, who is walking past, says they were so sorry. Oh, and the doctor is ready.
I said, how do you do. You do know that your office has screwed up twice (also known as every interaction we have had with your staff so far) in my husband's care, and that this is not a very good first impression. She looked startled, then apologized. Then she walked us through the PET scan. Online. Very cool. She showed us that his thyroid looked a little tender (eventually resolved as his low thyroid), and that his vocal cords lighted up (turned out to be "bowed vocal cords"), but that his liver and everything else looked pretty good, until we got down to the area just above the stomach, were there is evidence of something wrong.
This was biopsied as adenocarcinoma.
Then she explained the surgery she does. Basically there are two ways that the esophagus is completely removed. Her's is what they call minimally invasive - It takes 7 hrs - was originally developed at U of Pittsburgh. They don't do one major incision - lots of little ones. She talked about the mortality - about 5%, because she does about 18-20 of these per year. Also discussed why she prefers to work in a community hospital like this one. Seems like a nice, competent woman. She also assured us that her operating staff was much more competent than her office staff!
A PA came out and escorted us into a room - we sat for 15 minutes. No one said a word.
I asked where the rest room was - On the way back, I asked the receptionist why they were running so late - oh, we had an emergency, she said. Oh, I said, and we weren't entitled to that piece of information? Was their any special reason why they were so incredibly thoughtless? PA, who is walking past, says they were so sorry. Oh, and the doctor is ready.
I said, how do you do. You do know that your office has screwed up twice (also known as every interaction we have had with your staff so far) in my husband's care, and that this is not a very good first impression. She looked startled, then apologized. Then she walked us through the PET scan. Online. Very cool. She showed us that his thyroid looked a little tender (eventually resolved as his low thyroid), and that his vocal cords lighted up (turned out to be "bowed vocal cords"), but that his liver and everything else looked pretty good, until we got down to the area just above the stomach, were there is evidence of something wrong.
This was biopsied as adenocarcinoma.
Then she explained the surgery she does. Basically there are two ways that the esophagus is completely removed. Her's is what they call minimally invasive - It takes 7 hrs - was originally developed at U of Pittsburgh. They don't do one major incision - lots of little ones. She talked about the mortality - about 5%, because she does about 18-20 of these per year. Also discussed why she prefers to work in a community hospital like this one. Seems like a nice, competent woman. She also assured us that her operating staff was much more competent than her office staff!
Saturday, September 26, 2009
Diagnosing Esophageal Cancer
Getting older means, inevitably, that you see much more of doctors than you ever wanted.
Terry has been seeing what he regards as his fair share for many years. Before we met, he had been significantly overweight, and was diagnosed with Type II diabetes. The list of side effects scared him enough to make him lose 100 pounds, and he has kept it off. Oh, his weight would go up and down a little, but he never had to be on any medications. Completely diet-and exercise controlled for 25 years, baby!
He has been a participant in the CRIC Chronic Renal Insufficiency Cohort study at the University of Michigan for 5 years - this is a study of kidney function in Type II diabetic men. These longitudinal studies are so valuable.
Shortly after I finished treatment, Terry started having some trouble with swallowing food. We thought that he wasn't chewing his food enough - every once in a while, he would choke. The choking got worse, especially when he was eating something dry. Like, running around eating toast and peanut butter while trying to get the kid out the door for her senior year in high school. Suddenly, the food would get stuck, and if he tried to wash it down, he would be coughing up phlegm for an hour or more. The third time this happened, he passed out and fell on the tile kitchen floor. We spent a whole morning in the ER, before they referred him back to his Primary Care Physician (PCP). Of course, being a guy, he didn't go.
A few months later, we took a short vacation up in Frankenmuth, and the same thing happened. Well, he didn't pass out, but he was sick for several hours.
Sure sounded like an esophageal stricture to me - so I started, like any good wife, to nag.
Finally, in June, 2009, a year after our daughter graduated high school, he changed doctors, as his PCP was in Ann Arbor, and he just didn't want to drive that far. He reluctantly mentioned the swallowing problem to the doc, who recommended an endoscopy and dilation. This was scheduled for July 17.
Since I was working a new job, and Krista had just gotten her driver's license, we decided that she would go with him as the driver, as he was having anesthesia. Bad idea. They found suspicious cells, and Terry was almost totally out of it. And she didn't understand most of what the doctor said. I swear, God, I'll never miss another procedure.
The following week, they did an ultrasound under anesthesia, with a biopsy. We knew it wasn't good before the doctor came out, and it wasn't. They thought they saw at least one positive lymph node. Oh God. The recovery room nurse was a gem. Her father-in-law had had EC, and she talked to me for like 15 minutes about what we were facing - she talked about feeding tubes, and radiation, and how to help.
Next stop, at the gastroenterologist's hospital, is the surgeon and an oncologist. Guess who was on vacation. So, for 10 days, we worried and fussed.
The surgeon's office was supposed to order a PET scan, according to the gastroenterologist's office. But, since the doctor was on vacation, the scheduler asked the gastroenterologist's scheduler to order a CAT scan.
When we got the paper work, we were like - oh, someone's made a mistake. So we called. Neither the surgeon's nor the gastroenterologist's scheduler could do anything - basically, although they had ordered the tests, they were incapable of acting on patient's questions. I called the oncologist's office, although we hadn't seen him yet. We figured, since I saw another doctor in the same practice, that they would at least check the test. Oh, wrong. Couldn't be bothered. Asking questions was a violation of HIPPA, since husband wasn't officially a patient. Well, actually, I called MY oncologist, not his, but the nurse's job in this practice is to make sure that no patient phone calls get through to the doctor, and my doc's nurse Chris does a wonderful job.
I cried and yelled, I begged.
We finally called the oncall thoracic surgeon. Only 8 phone calls before we could get to somebody who would talk to us. He called the woman who wants to be our surgeon, and they changed the test to the proper PET.
Hard to believe that one of the first things they tell you when you enter cancer treatment is to avoid as much stress as possible. The doctors and their staffs are the primary cause of stress.
Terry has been seeing what he regards as his fair share for many years. Before we met, he had been significantly overweight, and was diagnosed with Type II diabetes. The list of side effects scared him enough to make him lose 100 pounds, and he has kept it off. Oh, his weight would go up and down a little, but he never had to be on any medications. Completely diet-and exercise controlled for 25 years, baby!
He has been a participant in the CRIC Chronic Renal Insufficiency Cohort study at the University of Michigan for 5 years - this is a study of kidney function in Type II diabetic men. These longitudinal studies are so valuable.
Shortly after I finished treatment, Terry started having some trouble with swallowing food. We thought that he wasn't chewing his food enough - every once in a while, he would choke. The choking got worse, especially when he was eating something dry. Like, running around eating toast and peanut butter while trying to get the kid out the door for her senior year in high school. Suddenly, the food would get stuck, and if he tried to wash it down, he would be coughing up phlegm for an hour or more. The third time this happened, he passed out and fell on the tile kitchen floor. We spent a whole morning in the ER, before they referred him back to his Primary Care Physician (PCP). Of course, being a guy, he didn't go.
A few months later, we took a short vacation up in Frankenmuth, and the same thing happened. Well, he didn't pass out, but he was sick for several hours.
Sure sounded like an esophageal stricture to me - so I started, like any good wife, to nag.
Finally, in June, 2009, a year after our daughter graduated high school, he changed doctors, as his PCP was in Ann Arbor, and he just didn't want to drive that far. He reluctantly mentioned the swallowing problem to the doc, who recommended an endoscopy and dilation. This was scheduled for July 17.
Since I was working a new job, and Krista had just gotten her driver's license, we decided that she would go with him as the driver, as he was having anesthesia. Bad idea. They found suspicious cells, and Terry was almost totally out of it. And she didn't understand most of what the doctor said. I swear, God, I'll never miss another procedure.
The following week, they did an ultrasound under anesthesia, with a biopsy. We knew it wasn't good before the doctor came out, and it wasn't. They thought they saw at least one positive lymph node. Oh God. The recovery room nurse was a gem. Her father-in-law had had EC, and she talked to me for like 15 minutes about what we were facing - she talked about feeding tubes, and radiation, and how to help.
Next stop, at the gastroenterologist's hospital, is the surgeon and an oncologist. Guess who was on vacation. So, for 10 days, we worried and fussed.
The surgeon's office was supposed to order a PET scan, according to the gastroenterologist's office. But, since the doctor was on vacation, the scheduler asked the gastroenterologist's scheduler to order a CAT scan.
When we got the paper work, we were like - oh, someone's made a mistake. So we called. Neither the surgeon's nor the gastroenterologist's scheduler could do anything - basically, although they had ordered the tests, they were incapable of acting on patient's questions. I called the oncologist's office, although we hadn't seen him yet. We figured, since I saw another doctor in the same practice, that they would at least check the test. Oh, wrong. Couldn't be bothered. Asking questions was a violation of HIPPA, since husband wasn't officially a patient. Well, actually, I called MY oncologist, not his, but the nurse's job in this practice is to make sure that no patient phone calls get through to the doctor, and my doc's nurse Chris does a wonderful job.
I cried and yelled, I begged.
We finally called the oncall thoracic surgeon. Only 8 phone calls before we could get to somebody who would talk to us. He called the woman who wants to be our surgeon, and they changed the test to the proper PET.
Hard to believe that one of the first things they tell you when you enter cancer treatment is to avoid as much stress as possible. The doctors and their staffs are the primary cause of stress.
Who We Are
My name is Sue. My husband Terry and I have been married for 21 yrs, and have a 19-yr-old. She was born when I was 41, and my husband was 46. She calls us her geezer parents.
Last year, I was diagnosed with Stage 1 breast cancer, and our daughter Krista missed days of school for my surgery, and assorted treatments.
This year, my husband was diagnosed with Stage 2 esophageal cancer, and started chemotherapy and radiation this week.
To say our lives are a little insane right now is an understatement. But writing is a good way to get the feelings out, and I have a lot of feelings that need to go somewhere.
Last year, I was diagnosed with Stage 1 breast cancer, and our daughter Krista missed days of school for my surgery, and assorted treatments.
This year, my husband was diagnosed with Stage 2 esophageal cancer, and started chemotherapy and radiation this week.
To say our lives are a little insane right now is an understatement. But writing is a good way to get the feelings out, and I have a lot of feelings that need to go somewhere.
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