Tuesday, June 27, 2006
This Cancer Researcher Gave Me a Shower Curtain...
From Law.com: Employment Case Puts Johns Hopkins Under the Microscope
Despite the political infighting at Johns Hopkins and the red tape, Dr. Ko has a grant from the Susan G. Komen Foundation and is going to be studying the effects of the drug 3-bromopyruvate (3-BrPA) on breast cancer and metastatic cancers.
She and one of my best friends (and bridesmaid) Wendy sent me a sequinned shower curtain as a wedding present, and I am so tardy on my thank you notes that I have yet to thank them.
Thank you, Dr. Ko. Thank you very much for the shower curtain and for the work that you are doing which has actual applications instead of being theoretical. Thank you for working on a way of combating tumors that seems to be non-toxic. Chemotherapy is a crap-shoot and is extremely unpleasant. I'd love to be involved in human trials--I'm sure there are many who would be. I hope the politics of your situation do not get you down and that you are able to progress with your work. You have my heartfelt admiration and gratitude.
"Dr. Young Ko believes that she has found a cure for cancer.
Using an inexpensive drug named 3-bromopyruvate, the Johns Hopkins University researcher was able to eliminate advanced liver cancer in lab animals. Earlier this year, after her work was profiled by the Baltimore Sun, dozens of cancer patients and their families contacted the medical school to ask when human trials would begin.
Not any time soon, it would seem. Ko's research is now at the center of a bitter employment dispute between the researcher and the university. " ...read more
Despite the political infighting at Johns Hopkins and the red tape, Dr. Ko has a grant from the Susan G. Komen Foundation and is going to be studying the effects of the drug 3-bromopyruvate (3-BrPA) on breast cancer and metastatic cancers.
She and one of my best friends (and bridesmaid) Wendy sent me a sequinned shower curtain as a wedding present, and I am so tardy on my thank you notes that I have yet to thank them.
Thank you, Dr. Ko. Thank you very much for the shower curtain and for the work that you are doing which has actual applications instead of being theoretical. Thank you for working on a way of combating tumors that seems to be non-toxic. Chemotherapy is a crap-shoot and is extremely unpleasant. I'd love to be involved in human trials--I'm sure there are many who would be. I hope the politics of your situation do not get you down and that you are able to progress with your work. You have my heartfelt admiration and gratitude.
- More on this:
- 3-Bromopyruvate Completely Eradicates Advanced Cancers in Come[sic] Rats
- Posts from The Cancer Forums - includes a post from a former colleague of Dr. Ko's explaining how the development of new treatments is stymied by a completely broken pharmaceutical system
Labels: 3-bromopyruvate, chemo, Dr. Young Ko, Johns Hopkins, pharmaceutical companies, shower curtain, Susan G. Komen, trials, Wendy
Sunday, February 05, 2006
Lesson Learned on 6A: be a squeaky wheel
The attending physician on floor 6A was usually preceeded by one of his interns, who would come to ask questions, take vitals, poke and prod, and ask me to breathe so he could listen with a stethescope. Then the full-fledged doctor would show up, with a group of two or more of his interns (I called them "doctorlets"), and repeat the process, which never elicited any new or exciting information. The typical questions were always: "How's your pain?" and "Any shortness of breath?" or "How are your bowels?" or "Much of an appetite?"
They would provide medication based on my answers, which gradually resulted in my taking, in addition to the patch I already had, an increased dosage on the patch, pills for pain (a narcotic and ibuprofen), pills for muscle spasms, muscle relaxing pills, pills for promoting bowel movements, pills for softening stools, pills for stomach health, pills for sleeping, pills for depressions, pills for anxiety, a powder mixed with liquid for--well, they were never able to really clarify what the Nutri-phos is for (I think it might be something like pedialyte)--either an injection of a very powerful opiate or liquid morphine taken orally when I was to be moved, and an incredibly painful shot for preventing blood clots that felt like a bee sting and which I decided might have consisted of concentrated bee venom. After having been immobile for several weeks and on various narcotic products, my digestive system was seriously backed up, which was leading to the abdominal pain and spleen/gallbladder symptoms. So they decided to step up the cleansing of the alimentary canal and also prescribed things intended to flush the colon from every conceivable direction. Yes. You know what I'm talking about. Mercifully by this time I had a private room.
Naturally, I came to dread visits by the attending and his little doctorlets. They were torturing me. Every time they came to visit, I found myself getting nauseous and vomit-y. When my dad and Susan came into town, they took over talking to the doctors when they could (the timing of their visits meant that sometimes they'd miss him and his posse on rounds), and would even leave the room to talk about topics that seemed to turn me green.
I was not in a good way.
When I got moved to my private room, I might have looked forward to getting more individual attention and care from the nursing staff. I now know that this does not necessarily happen.
One of the things the doctors told me is that I needed to drink as much as I could. Take in fluids at all times. Any fluids. Juice, water, milk, anything. I didn't seem to be getting any water, although they did have me on an iv. Also, food is important to get the bowels moving. I needed to keep my digestion working, but I didn't seem to be getting any food, either.
I was actually getting kind of hungry, which at that point meant that I was starving, since my appetite had generally been quite poor, but my breakfast never arrived. I assumed this had something to do with having been moved. Maybe my breakfast got delivered to the other room? By lunchtime I figured things would be straightened out, but again was kept waiting. They had been quite prompt with the food delivery; are they just slower on this hallway, or something? The doctors came, asking about my appetite, and they went. I complained I hadn't gotten any food, and they said they'd make sure the order was there to get anything I wanted.
A few hours later I was ready to chew my arm off.
I called the nurse.
"Um, am I supposed to get a lunch? I've been waiting and I'm really hungry."
"Oh, your orders say no food or water due to a test."
"What test?" I had been told no food or water for the untrasound, but that had been done at six o'clock the previous day.
She flipped through the chart, and found it. "Ultrasound," she said. "You need to not have food or water before the test."
When I pointed out that the test had already occurred--"Or is this another one?" I asked sarcastically--she looked a little bit disconcerted and went to go check.
A little bit later, somebody from food service showed up with a tray. Hospital food is not exciting, nor is it particularly appetizing, but I felt myself beginning to drool. Food, glorious food!
I beheld my tray. It consisted of clear broth, apple juice, and a plate of air.
I laughed hysterically. Clear liquid diet! This is just great...so I hit the nurse call light again and told the person who answered that my plate of air really wasn't the lunch I had been hoping for. "Have you been eating?" They wanted to know. "Usually when you're not eating they start you on clear liquids then..."
Yes, yes. I know all that. But I wasn't on a restricted diet. It was only for that one test, could I please have something normal, instead of something imaginary? He went to go ask the nurse if it was ok. I think she was embarrassed, because they agreed to get anything I wanted. My toasted bagel with cream cheese and container of chocolate milk were delicious.
This was not the only time different shifts of the nursing staff had some confusion about changes in my orders; I learned that as a patient, I was going to have to keep on top of things and let them know. My dad and Susan also helped keep a running list of questions to ask the doctors, which helped immensely. It's also good to know that you can question anything, and you do have the right to refuse the bee-sting shots if you just can't stand them any more, or the plate of air if you want something tastier.
To be continued...
They would provide medication based on my answers, which gradually resulted in my taking, in addition to the patch I already had, an increased dosage on the patch, pills for pain (a narcotic and ibuprofen), pills for muscle spasms, muscle relaxing pills, pills for promoting bowel movements, pills for softening stools, pills for stomach health, pills for sleeping, pills for depressions, pills for anxiety, a powder mixed with liquid for--well, they were never able to really clarify what the Nutri-phos is for (I think it might be something like pedialyte)--either an injection of a very powerful opiate or liquid morphine taken orally when I was to be moved, and an incredibly painful shot for preventing blood clots that felt like a bee sting and which I decided might have consisted of concentrated bee venom. After having been immobile for several weeks and on various narcotic products, my digestive system was seriously backed up, which was leading to the abdominal pain and spleen/gallbladder symptoms. So they decided to step up the cleansing of the alimentary canal and also prescribed things intended to flush the colon from every conceivable direction. Yes. You know what I'm talking about. Mercifully by this time I had a private room.
Naturally, I came to dread visits by the attending and his little doctorlets. They were torturing me. Every time they came to visit, I found myself getting nauseous and vomit-y. When my dad and Susan came into town, they took over talking to the doctors when they could (the timing of their visits meant that sometimes they'd miss him and his posse on rounds), and would even leave the room to talk about topics that seemed to turn me green.
I was not in a good way.
When I got moved to my private room, I might have looked forward to getting more individual attention and care from the nursing staff. I now know that this does not necessarily happen.
One of the things the doctors told me is that I needed to drink as much as I could. Take in fluids at all times. Any fluids. Juice, water, milk, anything. I didn't seem to be getting any water, although they did have me on an iv. Also, food is important to get the bowels moving. I needed to keep my digestion working, but I didn't seem to be getting any food, either.
I was actually getting kind of hungry, which at that point meant that I was starving, since my appetite had generally been quite poor, but my breakfast never arrived. I assumed this had something to do with having been moved. Maybe my breakfast got delivered to the other room? By lunchtime I figured things would be straightened out, but again was kept waiting. They had been quite prompt with the food delivery; are they just slower on this hallway, or something? The doctors came, asking about my appetite, and they went. I complained I hadn't gotten any food, and they said they'd make sure the order was there to get anything I wanted.
A few hours later I was ready to chew my arm off.
I called the nurse.
"Um, am I supposed to get a lunch? I've been waiting and I'm really hungry."
"Oh, your orders say no food or water due to a test."
"What test?" I had been told no food or water for the untrasound, but that had been done at six o'clock the previous day.
She flipped through the chart, and found it. "Ultrasound," she said. "You need to not have food or water before the test."
When I pointed out that the test had already occurred--"Or is this another one?" I asked sarcastically--she looked a little bit disconcerted and went to go check.
A little bit later, somebody from food service showed up with a tray. Hospital food is not exciting, nor is it particularly appetizing, but I felt myself beginning to drool. Food, glorious food!
I beheld my tray. It consisted of clear broth, apple juice, and a plate of air.
I laughed hysterically. Clear liquid diet! This is just great...so I hit the nurse call light again and told the person who answered that my plate of air really wasn't the lunch I had been hoping for. "Have you been eating?" They wanted to know. "Usually when you're not eating they start you on clear liquids then..."
Yes, yes. I know all that. But I wasn't on a restricted diet. It was only for that one test, could I please have something normal, instead of something imaginary? He went to go ask the nurse if it was ok. I think she was embarrassed, because they agreed to get anything I wanted. My toasted bagel with cream cheese and container of chocolate milk were delicious.
This was not the only time different shifts of the nursing staff had some confusion about changes in my orders; I learned that as a patient, I was going to have to keep on top of things and let them know. My dad and Susan also helped keep a running list of questions to ask the doctors, which helped immensely. It's also good to know that you can question anything, and you do have the right to refuse the bee-sting shots if you just can't stand them any more, or the plate of air if you want something tastier.
To be continued...
Labels: anxiety, Dad, doctorlets, food, hospital, morphine, nausea, spasms, Susan G. Komen
