We went to see Jana's hematologist/oncologist today and got good news on her blood cell count. When Jana began treatment her white cell count was 186,000 where 10,000 is considered normal. After one week the count dropped to 162,000, and yesterday it was down to 80,000--a drop of 50% in one week. It will probably take several months for the count to be normal because the rate of decline will slow down, but the doctor was very happy with the results. Gleevec does appear to be a magic bullet for this cancer.
I can also tell that Jana is feeling better. She has much less shortness of breath and has more energy.
David
June 30, 2010
June 26, 2010
Hospitalization: Then and Now
About 25 years ago I had gallbladder surgery. That was before they started using a laproscopic procedure, so I spent a couple of nights in the hospital. That was my last hospitalization until my thoracoscopy in late May. Some things have changed and some have stayed the same.
For the Better
I think hospital admission procedures are easier now. Part of that may be that I receive all of my healthcare from a single organization—Scott and White Healthcare—that uses electronic medical records. The hospital already had all of the information needed for admission, so I simply had to show up at a scheduled time at the hospital and sign a few papers. Very convenient.
I think the hospital is more compulsive about ensuring that the patient is the one they are supposed to be doing something to. The nurses and others would hardly speak to me without asking me my name and birth date, and before the thoracoscopy, the surgeon came in to initial my right shoulder to ensure that everyone agreed that it was my right chest they were going to look at. In the past they would look at my hospital ID bracelet before doing anything, but I guess it is more accurate to have me give them my name and DOB.
My room seemed to be smaller than the one I had 25 years ago; however, it was not too small. It seemed to be just the right size. It had a very comfortable hospital bed, a small recliner, and an interesting small sofa that expanded lengthwise so a visitor could stretch out to sleep. I think that was the best innovation in the room. There was also a small wardrobe with a flat screen TV above it.
Pain management also seems better than 25 years ago. While I never suffered much the first time, I had virtually no pain this time because my epidural drip that shut down pain in the chest area. The painkillers were in a secure, electrically powered box hanging from my IV stand. When the medicine ran out, an alarm would sound, and I’d push the call button and alert the nurses. Then someone from pain management would come around to add new medicine to the machine. Actually, my regular IV also sounded an alarm when it ran out. That seems much more efficient than depending on a nurse or aide’s having to visually check the IV.
There were other new electronic aspects to my stay. Whenever the nurse came around to give me my medications, the cart had a built in laptop with a scanner that read my hospital ID to record who was receiving the dosage.
The final improvement was the use of wound adhesive to close all of my external incisions. With this surgical super glue, there are no more stitches to remove. The glue just flakes off after the incision has healed.
About the Same
At the time of my gallbladder surgery, I had been working long hours, and in some ways the surgery was a kind of a vacation. I really liked the fact that I could watch TV in the middle of the night without worrying about having to get up in the morning and without disturbing Jana or the girls. I also enjoyed rolling my IV stand down the hall to the kitchen and getting juice or ice cream at any time of the day or night. This time, my hospitalization was not a vacation, but it was not a bad experience either because I still had unhindered access to a refrigerator with yogurt, ice cream, and juices.
Worse
The hospital participates in a federal program in which patients rate their stay on several common items, and the results are used to compare hospitals. Items over which nurses and auxiliary staff have some control are provided in the box below.
· Nurses were courteous and respectful, listened carefully, and explained things clearly.
· Patients got help from the staff as quickly as they felt they needed it.
· Patients' rooms and bathrooms were kept clean.
· Whether patients would recommend the hospital to friends and family.
· It was quiet at night around patients' rooms.
· When patients were ready to leave, the staff discussed the help they would need and gave them written information about their recovery.
All of these items are important, but except for the last one, they have little to do with the quality of the medical treatment provided to the patient. The halls were filled with posters about providing “5-star” service on floor 4D, and the nurses, aides, and other staff were with one exception friendly, solicitous, and helpful. The problem is that rankings on these broad items divert attention from more crucial aspects of one's treatment.
The idea that schools, colleges, hospitals, and other institutions can be ranked in terms of quality is appealing on the surface, but the ranking processes are too simplistic to really be useful. Questionnaires are easy to create and analyze, and people think the ratings provide accountability, but it is all so superficial. These items are not sufficient to evaluate the quality of nursing at the hospital. Patients’ reactions are much less important than the ways medical procedures are carried out and the quality of the staff’s responses to nonroutine medical events. The name checking procedures and the use of a computerized system to check medications mentioned above attests to the fact that attention is being paid to important processes, but the fact that I was given different deep-breathing instructions by different personnel, and the fact that my glaucoma drops were somehow misplaced suggest that ratings of patient satisfaction might not be the best data on which to evaluate a hospital. Lets hope that there are leaders in all of these institutions who focus on improving significant institutional procedures and practices in addition to the PR window dressing that the rankings represent.
Oh, did I mention that patients can go down to the floor’s kitchen and get ice cream, juices, yogurt, and other snacks whenever they want?
David
For the Better
I think hospital admission procedures are easier now. Part of that may be that I receive all of my healthcare from a single organization—Scott and White Healthcare—that uses electronic medical records. The hospital already had all of the information needed for admission, so I simply had to show up at a scheduled time at the hospital and sign a few papers. Very convenient.
I think the hospital is more compulsive about ensuring that the patient is the one they are supposed to be doing something to. The nurses and others would hardly speak to me without asking me my name and birth date, and before the thoracoscopy, the surgeon came in to initial my right shoulder to ensure that everyone agreed that it was my right chest they were going to look at. In the past they would look at my hospital ID bracelet before doing anything, but I guess it is more accurate to have me give them my name and DOB.
My room seemed to be smaller than the one I had 25 years ago; however, it was not too small. It seemed to be just the right size. It had a very comfortable hospital bed, a small recliner, and an interesting small sofa that expanded lengthwise so a visitor could stretch out to sleep. I think that was the best innovation in the room. There was also a small wardrobe with a flat screen TV above it.
Pain management also seems better than 25 years ago. While I never suffered much the first time, I had virtually no pain this time because my epidural drip that shut down pain in the chest area. The painkillers were in a secure, electrically powered box hanging from my IV stand. When the medicine ran out, an alarm would sound, and I’d push the call button and alert the nurses. Then someone from pain management would come around to add new medicine to the machine. Actually, my regular IV also sounded an alarm when it ran out. That seems much more efficient than depending on a nurse or aide’s having to visually check the IV.
There were other new electronic aspects to my stay. Whenever the nurse came around to give me my medications, the cart had a built in laptop with a scanner that read my hospital ID to record who was receiving the dosage.
The final improvement was the use of wound adhesive to close all of my external incisions. With this surgical super glue, there are no more stitches to remove. The glue just flakes off after the incision has healed.
About the Same
At the time of my gallbladder surgery, I had been working long hours, and in some ways the surgery was a kind of a vacation. I really liked the fact that I could watch TV in the middle of the night without worrying about having to get up in the morning and without disturbing Jana or the girls. I also enjoyed rolling my IV stand down the hall to the kitchen and getting juice or ice cream at any time of the day or night. This time, my hospitalization was not a vacation, but it was not a bad experience either because I still had unhindered access to a refrigerator with yogurt, ice cream, and juices.
Worse
The hospital participates in a federal program in which patients rate their stay on several common items, and the results are used to compare hospitals. Items over which nurses and auxiliary staff have some control are provided in the box below.
· Nurses were courteous and respectful, listened carefully, and explained things clearly.
· Patients got help from the staff as quickly as they felt they needed it.
· Patients' rooms and bathrooms were kept clean.
· Whether patients would recommend the hospital to friends and family.
· It was quiet at night around patients' rooms.
· When patients were ready to leave, the staff discussed the help they would need and gave them written information about their recovery.
All of these items are important, but except for the last one, they have little to do with the quality of the medical treatment provided to the patient. The halls were filled with posters about providing “5-star” service on floor 4D, and the nurses, aides, and other staff were with one exception friendly, solicitous, and helpful. The problem is that rankings on these broad items divert attention from more crucial aspects of one's treatment.
The idea that schools, colleges, hospitals, and other institutions can be ranked in terms of quality is appealing on the surface, but the ranking processes are too simplistic to really be useful. Questionnaires are easy to create and analyze, and people think the ratings provide accountability, but it is all so superficial. These items are not sufficient to evaluate the quality of nursing at the hospital. Patients’ reactions are much less important than the ways medical procedures are carried out and the quality of the staff’s responses to nonroutine medical events. The name checking procedures and the use of a computerized system to check medications mentioned above attests to the fact that attention is being paid to important processes, but the fact that I was given different deep-breathing instructions by different personnel, and the fact that my glaucoma drops were somehow misplaced suggest that ratings of patient satisfaction might not be the best data on which to evaluate a hospital. Lets hope that there are leaders in all of these institutions who focus on improving significant institutional procedures and practices in addition to the PR window dressing that the rankings represent.
Oh, did I mention that patients can go down to the floor’s kitchen and get ice cream, juices, yogurt, and other snacks whenever they want?
David
June 25, 2010
A Busy Week
Medical Front
This week has been busy with three trips to Temple for tests and a doctor’s visit.
We had a positive development on Wednesday when we learned that Jana’s white cell count had dropped from 186,000 to 162,000 in one week. I don't know if that is good (whether or not the values might randomly rise and fall by 24,000 from day to day), but we were glad to see that the change was in the right direction. She sees the doctor next week following the next blood test, and we'll be able to quiz her then.
My news was not as positive. They use a scale from 0 to 100 to measure lung function. Without a right lung, they would want a score of 40 or higher before doing the surgery, and my score was only 35. The doctor said he would probably offer the surgery to me, but I still have a couple of other tests to do--an echocardiogram and a max-ox test in which I breathe through a tube while exercising to exhaustion. That test, which will not be done until July 14, will indicate the extent to which my body can process oxygen. I have time to recover from my little surgeries and get in some good walking in order to perform my best. Unless the PET scan turns up cancer in the left chest cavity, I expect I will go for the surgery if it is offered.
I had some interesting tests this week that I'll write up in another post.
Housing Front
We feel very fortunate and relieved to have found a house that we like near the hospital, and we signed a lease yesterday. The address is
3414 Chaparral Drive
Temple, TX 76502
We get the house on July 5, and our household goods from San Antonio (our Okinawa shipment) will be delivered on July 6. It is an older home in an established neighborhood, as you can tell if you check out the address on Google Maps. Even though it is an older home, its energy efficiency was upgraded a few years ago with the addition of insulation and high efficiency windows. I estimate that it was built in the 70’s; however, the kitchen has been upgraded with granite countertops, and other improvements have been made. It's not perfect, but the location and the timing made it the best choice.
David
This week has been busy with three trips to Temple for tests and a doctor’s visit.
We had a positive development on Wednesday when we learned that Jana’s white cell count had dropped from 186,000 to 162,000 in one week. I don't know if that is good (whether or not the values might randomly rise and fall by 24,000 from day to day), but we were glad to see that the change was in the right direction. She sees the doctor next week following the next blood test, and we'll be able to quiz her then.
My news was not as positive. They use a scale from 0 to 100 to measure lung function. Without a right lung, they would want a score of 40 or higher before doing the surgery, and my score was only 35. The doctor said he would probably offer the surgery to me, but I still have a couple of other tests to do--an echocardiogram and a max-ox test in which I breathe through a tube while exercising to exhaustion. That test, which will not be done until July 14, will indicate the extent to which my body can process oxygen. I have time to recover from my little surgeries and get in some good walking in order to perform my best. Unless the PET scan turns up cancer in the left chest cavity, I expect I will go for the surgery if it is offered.
I had some interesting tests this week that I'll write up in another post.
Housing Front
We feel very fortunate and relieved to have found a house that we like near the hospital, and we signed a lease yesterday. The address is
3414 Chaparral Drive
Temple, TX 76502
We get the house on July 5, and our household goods from San Antonio (our Okinawa shipment) will be delivered on July 6. It is an older home in an established neighborhood, as you can tell if you check out the address on Google Maps. Even though it is an older home, its energy efficiency was upgraded a few years ago with the addition of insulation and high efficiency windows. I estimate that it was built in the 70’s; however, the kitchen has been upgraded with granite countertops, and other improvements have been made. It's not perfect, but the location and the timing made it the best choice.
David
June 22, 2010
Economist Special Report on the Human Genome
I love the Economist magazine, especially their coverage of science and technology. The current issue has an outstanding special report on the human genome--what has been learned in the last decade and the implications for the future. It even includes a discussion of the kind of targeted cancer treatment that Jana is getting. I highly recommend it to anyone who wants to keep on top of the remarkable findings that are revolutionizing biology. Here's the link: http://www.economist.com/node/16349358.
The report is supposed to be available only to those with subscriptions; however, I believe you will be able to read it because I have a subscription and I'm giving you the link. If you can't read it, send us an email at cancercouple@gmail.com, and I'll see if I can get it to you.
David
The report is supposed to be available only to those with subscriptions; however, I believe you will be able to read it because I have a subscription and I'm giving you the link. If you can't read it, send us an email at cancercouple@gmail.com, and I'll see if I can get it to you.
David
June 19, 2010
Welcome
Welcome to our Cancer Couple blog where we will chronicle our interactions with mesothelioma and chronic myelogenous leukemia (CML). Why would someone create a blog about his or her health? It certainly seems immodest and egocentric, and I suppose it is to some degree; however, I have always found the practice and science of medicine to be very interesting, and I think there is something about the teacher in me that pushes me to share what I have learned with others. For example, there are encouraging developments such as the targeted treatments for CML that deserve to be widely known. I also use intellectualization as a way of managing existential anxiety, and I think writing down my thoughts and observations will help me cope with these medical challenges. I hope that sharing what we know and what we are doing will provide our family and friends with a richer context for understanding when they face similar challenges. Finally, the blog carries on a family tradition. My mother created a scrapbook documenting my father’s successful battle with malignant melanoma, and this blog will be the 21st century equivalent.
Anyway, we are new to blogging and would appreciate any advice our readers might have. For example, what does the “Followers” section on the right mean? Should I take that section off the page?
We hope you find this blog interesting, informative, and useful. Please contact us if you have any questions or comments.
David
Anyway, we are new to blogging and would appreciate any advice our readers might have. For example, what does the “Followers” section on the right mean? Should I take that section off the page?
We hope you find this blog interesting, informative, and useful. Please contact us if you have any questions or comments.
David
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