As a normal person, you go to the doctor for a thingy (warning lots of technical terms ahead) and the doctor says 'hmm, lets get an x-ray'. No sweat, you get an x-ray. The doctor says 'oh, its nothing, it should go away in a few weeks but call me if it doesn't.' You go about your life, you forget about it, you realize a couple of weeks later that your thingy doesn't bother you any more.
As a cancer person, you go to the doctor for a thingy and the doctor says 'hmm its probably nothing but with your medical history, blah, blah, blah, you should get a blood test, an ultrasound, and I'll call you with the results'. You wait, only a tiny bit stressed until you get the test results which are 'I want a follow up blood test and ultrasound in four weeks and if there is no change, with your medical history, blah, blah, blah, you need to see a specialist for follow up and probably a CT scan'. Your stress level goes to moderate levels until two days before the second set of tests where they skyrocket, your brain is going well down the path of 'what if'.
You grab your ativan and it becomes your life support system and gets you to your follow up tests and through the results where you meet yet another specialist to add to your 'posse of doctors' who says 'hmm... with your medical history, blah, blah, blah, I want to see you every three months for a year and if its stable, we'll stretch to every six months and go from there.'
What happened to that normal person? It heard the worst once and can't unhear it so its stuck in their brain and they become the cancer person who just hears 'with your medical history blah, blah, blah' and waits for the 'worst' again. And the doctors seem to know that once you get to be a cancer person, the likelihood is greater that you will hear it again.
Yesterday I went for my follow up ultrasound which was the follow up to the follow up of what was supposed to be a baseline ultrasound a year ago. It came back as stable but come back for blood tests in six months and an ultrasound in a year. This means its still big enough to be seen but too small to biopsy. It is more likely thyroid tissue which they don't like to see in people like me so they will take regular ultrasounds of it. Recurrences this far out are unlikely but not unheard of.
So now I have to recover from the ativan I have been living on for the past few days. (No I haven't taken that much - one a night for the two nights prior and one-half of one yesterday morning to survive the tests.) I really just have to get my stress level under control until I have the next trip in my cancer life which is in February sometime where I see my oncologist and will probably hear something about 'with your medical history we need to be sure, blah, blah, blah'.
Friday, January 21, 2011
Thursday, January 20, 2011
Look out - change ahead!
First - mental note to self - it may look like water on the road but it could be ice, which is slippery and will cause you to fall on your butt and cause bruises later on.
We have change ahead and of course there are protests - even though the changes should prove good in the long term. The FDA wants to change the way medical devices are approved. The current system was started in 1976. Times have changed since then. Any system based on information that is 35 years old probably does need a tune/upgrade/replacement. Think of it this way, if your kitchen was 35 years old with no upgrades in the meantime, you might need some new appliances and a coat of paint to say.
But of course the big drug companies are protesting the change. Their lobbying group said: 'they would make device reviews longer and more expensive, hurting innovation and endangering jobs. The group represents most of the largest device firms, including Medtronic Inc., Stryker Corp. and Johnson & Johnson.'
Of course they say that because they have to change and spend money to adapt their business policies. But one of the bigger problems with the 1976 system is there is a loophole that allows the approval of some items that slip through the process.
'The so-called 510(k) system for devices was created in 1976 to grant speedy approval to devices that are similar to products already on the market. It is popular among manufacturers because it is a faster, cheaper path to market than the review process for novel devices, which must undergo rigorous medical testing. Hip replacements and drug pumps are among the devices cleared under the system.'
So if a new device is slipped through because it is similar to products already on the market, but if device A went through the approval process and 25 years later and 25 new models later, how similar is the 25th generation product to the original device A? Your IBM selectric typewriter was approved in 1976 and now you are typing on your iPhone. What's the difference?
I see nothing wrong with change. Change is inevitable. We cannot stay the same and expect the word to stay the same. Technology has changed everything as well.
We have change ahead and of course there are protests - even though the changes should prove good in the long term. The FDA wants to change the way medical devices are approved. The current system was started in 1976. Times have changed since then. Any system based on information that is 35 years old probably does need a tune/upgrade/replacement. Think of it this way, if your kitchen was 35 years old with no upgrades in the meantime, you might need some new appliances and a coat of paint to say.
But of course the big drug companies are protesting the change. Their lobbying group said: 'they would make device reviews longer and more expensive, hurting innovation and endangering jobs. The group represents most of the largest device firms, including Medtronic Inc., Stryker Corp. and Johnson & Johnson.'
Of course they say that because they have to change and spend money to adapt their business policies. But one of the bigger problems with the 1976 system is there is a loophole that allows the approval of some items that slip through the process.
'The so-called 510(k) system for devices was created in 1976 to grant speedy approval to devices that are similar to products already on the market. It is popular among manufacturers because it is a faster, cheaper path to market than the review process for novel devices, which must undergo rigorous medical testing. Hip replacements and drug pumps are among the devices cleared under the system.'
So if a new device is slipped through because it is similar to products already on the market, but if device A went through the approval process and 25 years later and 25 new models later, how similar is the 25th generation product to the original device A? Your IBM selectric typewriter was approved in 1976 and now you are typing on your iPhone. What's the difference?
I see nothing wrong with change. Change is inevitable. We cannot stay the same and expect the word to stay the same. Technology has changed everything as well.
Wednesday, January 19, 2011
So what do you want?
No not at the drive through, but at the end. At the end of life. Do you know what you want? Do you want hospice care, do you want to fight until the bitter end, do you want to take the opportunity to die at home?
No one wants to die but its going to happen to all of us at some point. There is always the possibility we will be hit by a bus tomorrow and that's it. No questions on end of life treatment. Or you can get a terminal diagnosis tomorrow with 4-6 weeks left. So what do you want?
Apparently its not just for you but for your family members. If you have solid plans that are shared with family they do not have to go through the agonizing process. And it has long term effects in less depression in family after the death.
Funerals and deaths are all about those left behind. They may be for the dead but they really are for others still alive. So do your family and friends a favor and tell them what you want.
This is what I want - a do not resuscitate order, no last life extending treatments, I want to be peaceful and die comfortably - either in a hospice or at home. But first I will host my own memorial service - a big bash that I can attend with all my favorite foods (and if you don't like them, tough cookies), live band, dancing, and lots of fun. So in another few decades, look for your invitation to the party of the year. Then you all can figure out what you want to do after I'm gone.
No one wants to die but its going to happen to all of us at some point. There is always the possibility we will be hit by a bus tomorrow and that's it. No questions on end of life treatment. Or you can get a terminal diagnosis tomorrow with 4-6 weeks left. So what do you want?
Apparently its not just for you but for your family members. If you have solid plans that are shared with family they do not have to go through the agonizing process. And it has long term effects in less depression in family after the death.
Funerals and deaths are all about those left behind. They may be for the dead but they really are for others still alive. So do your family and friends a favor and tell them what you want.
This is what I want - a do not resuscitate order, no last life extending treatments, I want to be peaceful and die comfortably - either in a hospice or at home. But first I will host my own memorial service - a big bash that I can attend with all my favorite foods (and if you don't like them, tough cookies), live band, dancing, and lots of fun. So in another few decades, look for your invitation to the party of the year. Then you all can figure out what you want to do after I'm gone.
Tuesday, January 18, 2011
The story without the happy ending
Life after a cancer diagnosis is never normal again. You live waiting to see if the other shoe will drop. Some who think they are cured are not. They are told 'all clear' and it does not mean there is no cancer in their body. It means there is no cancer detected in their body. There is a big difference.
There is a big bandwagon going on to raise cancer awareness. Thank you it is raised. Especially the pink bandwagon. We all know about it. In some ways I am grateful for all the bandwagons that have raised awareness - people now talk about cancer.
But there is another side of cancer - those with metastatic cancer - meaning it has spread to another part of your body. When cancer is staged, they look at several signs, which vary based on the type of cancer you have. They look at things like size of the tumor, lymph node involvement, and spread of the disease. If your cancer has spread to another part of your body - it has metastasized.
Once cancer has metastasized, your life is different. You live from scan to scan - CT scans are common. They don't worry about a lifetime dose of radiation from CT scans because you already have cancer and your life time is already shortened.
Here are stories of several women who have metastatic breast cancer. The difference for them is they were diagnosed with cancer that has already spread. All cancer patients live with the fear their cancer will spread and they won't have a happy ending.
So why is so little money of the amount spent on cancer research spent on metastatic cancer? 5% is the number that I think is correct. Cancer spread is what we are concerned about. This is why cancer patients get so much follow up - to look for cancer spread or recurrence. This is waiting for the other shoe to drop.
There is a big bandwagon going on to raise cancer awareness. Thank you it is raised. Especially the pink bandwagon. We all know about it. In some ways I am grateful for all the bandwagons that have raised awareness - people now talk about cancer.
But there is another side of cancer - those with metastatic cancer - meaning it has spread to another part of your body. When cancer is staged, they look at several signs, which vary based on the type of cancer you have. They look at things like size of the tumor, lymph node involvement, and spread of the disease. If your cancer has spread to another part of your body - it has metastasized.
Once cancer has metastasized, your life is different. You live from scan to scan - CT scans are common. They don't worry about a lifetime dose of radiation from CT scans because you already have cancer and your life time is already shortened.
Here are stories of several women who have metastatic breast cancer. The difference for them is they were diagnosed with cancer that has already spread. All cancer patients live with the fear their cancer will spread and they won't have a happy ending.
So why is so little money of the amount spent on cancer research spent on metastatic cancer? 5% is the number that I think is correct. Cancer spread is what we are concerned about. This is why cancer patients get so much follow up - to look for cancer spread or recurrence. This is waiting for the other shoe to drop.
Monday, January 17, 2011
Thoughts on Complementary and Alternative Medicine
I was misusing these terms. Complementary medicine is used in addition to traditional medicine - like acupuncture. Alternative medicine is used instead of traditional medicine - like herbal remedies, prayer, etc.
I am not so sure about alternative medicine. I think they are outside my comfort zone.
Complementary medicine has made me skeptical in the past. But I think my horizons are expanding for many reasons. I joined a support group during chemo and someone suggested Reiki for stress reduction. I tried it once and it made me relax. I tried it a few more times but decided I didn't like the woman doing the Reiki so I quit. She actually had me try expressive arts as well. Which in looking back, was helpful.
I have several friends who have tried acupuncture, Reiki, and massage for stress and pain relief. I was a weinie and didn't try. Acupuncture involves needles of which I have never been a fan. Reiki I considered but never thought that much of it again. Massage I would do but I was told not to have any massage because of my back and lymphedema issues. Sometimes I would kill for a hot stone massage...
Now I am going to acupuncture regularly. I think it is helping me with stress and with relaxing more. I am not sure yet on back pain. I had acupuncture on Saturday and then Sunday afternoon and evening (and this morning) was in a lot of pain. But that could be from sitting through a movie yesterday as well. But I think acupuncture has its uses.
If I ever have more cancer treatments (I was going to say 'If I ever have cancer again' but since they never know if it goes away I decided that wasn't right) I will definitely incorporate more acupuncture and Reiki into my treatment. They would complement my other treatments. But on the other hand, why wait? Maybe I'll try it sooner. I guess I am a convert.
I am not so sure about alternative medicine. I think they are outside my comfort zone.
Complementary medicine has made me skeptical in the past. But I think my horizons are expanding for many reasons. I joined a support group during chemo and someone suggested Reiki for stress reduction. I tried it once and it made me relax. I tried it a few more times but decided I didn't like the woman doing the Reiki so I quit. She actually had me try expressive arts as well. Which in looking back, was helpful.
I have several friends who have tried acupuncture, Reiki, and massage for stress and pain relief. I was a weinie and didn't try. Acupuncture involves needles of which I have never been a fan. Reiki I considered but never thought that much of it again. Massage I would do but I was told not to have any massage because of my back and lymphedema issues. Sometimes I would kill for a hot stone massage...
Now I am going to acupuncture regularly. I think it is helping me with stress and with relaxing more. I am not sure yet on back pain. I had acupuncture on Saturday and then Sunday afternoon and evening (and this morning) was in a lot of pain. But that could be from sitting through a movie yesterday as well. But I think acupuncture has its uses.
If I ever have more cancer treatments (I was going to say 'If I ever have cancer again' but since they never know if it goes away I decided that wasn't right) I will definitely incorporate more acupuncture and Reiki into my treatment. They would complement my other treatments. But on the other hand, why wait? Maybe I'll try it sooner. I guess I am a convert.
Sunday, January 16, 2011
Emergency Rooms
One of my pet peeves is the misuse of Emergency Rooms. They are not for people with sniffles, sore throats, etc. They are for true emergencies - allergic reactions to bee stings, heart attacks, appendicitis, car accidents, limbs dripping blood, etc. Personally I will not go to an emergency room unless I would die before my doctor's office next opened up.
The last time I went to an emergency room was when I was told by my doctor to go to there because I needed to be admitted due to low blood counts during chemo. I waited approximately 8 hours to get admitted so I might as well as gotten a good night's sleep at home and called my doctor in the morning. If that ever happens again, I will wait until the next morning and go see my doctor and get admitted that way.
I just read this account (not for the squeamish) of the Tucson hospital's emergency room after last weekend's shooting. This is what, unfortunately, emergency rooms are designed to treat. They use a triage system and if you show up for sniffles, you are going to wait. If you walk in with chest pains, you will not wait. Copious amounts of blood are also treated quickly, little cuts which need stitches get to wait.
Emergency rooms are designed to treat trauma. They are also mandated to treat everyone who shows up in one. This causes a problem because people without insurance know this and are forced to use them because they have no other access to care. Or you sprain your ankle on a Saturday night and you end up in the ER as well.
The problem is that this overloads the ER system who then are facing urgent and non urgent patients. The non urgent patients get treated eventually but they face long waits. They truly do need treatment but not at the ER level. But if there is no other access to care due to weekend, overnight, lack of insurance etc, they have no choice.
This is another example of where our health care system needs some changes. Where I am treated, they have an ER, open 24/7, and also a non-urgent walk in clinic - which is not open 24/7. The clinic helps if I have sprained my ankle and need to see someone, or a sick child with an ear infection needs to see a doctor. But after hours, there are no choices.
Work with me here, with national health care where everyone has insurance, what if hospitals had emergency rooms that were side by side with 24/7 walk in clinics? You go to the same part of the hospital and if you are dripping blood and need immediate care, you are triaged and seen by someone asap. But if you have a child with an ear infection or an ankle sprain, you are sent to a separate area where you wait with everyone else in order to be seen by a doctor for a prescription or to be sent for an x-ray.
We all need a place to go for the nanosecond of stupidity which results in a bump on the head or to talk care of the child who runs into a door while chasing a sibling but we need to stay out of the way of the car accident victims.
The last time I went to an emergency room was when I was told by my doctor to go to there because I needed to be admitted due to low blood counts during chemo. I waited approximately 8 hours to get admitted so I might as well as gotten a good night's sleep at home and called my doctor in the morning. If that ever happens again, I will wait until the next morning and go see my doctor and get admitted that way.
I just read this account (not for the squeamish) of the Tucson hospital's emergency room after last weekend's shooting. This is what, unfortunately, emergency rooms are designed to treat. They use a triage system and if you show up for sniffles, you are going to wait. If you walk in with chest pains, you will not wait. Copious amounts of blood are also treated quickly, little cuts which need stitches get to wait.
Emergency rooms are designed to treat trauma. They are also mandated to treat everyone who shows up in one. This causes a problem because people without insurance know this and are forced to use them because they have no other access to care. Or you sprain your ankle on a Saturday night and you end up in the ER as well.
The problem is that this overloads the ER system who then are facing urgent and non urgent patients. The non urgent patients get treated eventually but they face long waits. They truly do need treatment but not at the ER level. But if there is no other access to care due to weekend, overnight, lack of insurance etc, they have no choice.
This is another example of where our health care system needs some changes. Where I am treated, they have an ER, open 24/7, and also a non-urgent walk in clinic - which is not open 24/7. The clinic helps if I have sprained my ankle and need to see someone, or a sick child with an ear infection needs to see a doctor. But after hours, there are no choices.
Work with me here, with national health care where everyone has insurance, what if hospitals had emergency rooms that were side by side with 24/7 walk in clinics? You go to the same part of the hospital and if you are dripping blood and need immediate care, you are triaged and seen by someone asap. But if you have a child with an ear infection or an ankle sprain, you are sent to a separate area where you wait with everyone else in order to be seen by a doctor for a prescription or to be sent for an x-ray.
We all need a place to go for the nanosecond of stupidity which results in a bump on the head or to talk care of the child who runs into a door while chasing a sibling but we need to stay out of the way of the car accident victims.
Saturday, January 15, 2011
Living in the 'all cancer all the time life'
I am a person living with cancer. But cancer does not run my life. I often do normal things - go to the grocery store, pay bills, go to work, talk to my friends, go on vacation, etc. Cancer people are real people. We talk about cancer with each other but we don't go up to people and say 'hi I have cancer, do you?'.
Yesterday I volunteered to help at a trade show by staffing a booth for a cancer related organization to help raise money for them. People came up and asked about our mission and talked about their experiences with cancer. They had it. Their wife just died from it. Their wife had it but did not die from cancer but from something else. Their sister, mother, father, cousin, granddaughter, etc., etc., had cancer.
When I was driving home, I felt emotionally drained. I felt I had spent a day in the all cancer all the time life. All I did was talk about cancer, my experiences, and their experiences. It was very difficult. When I got home I was emotionally and physically exhausted - even though I didn't even make it through a whole day.
When you are in cancer treatment, you still don't only talk cancer all the time. You rush to get to the doctor in time and hope you can find a (damn) parking space. You have to go to the grocery store, pay bills, etc.
But yesterday wasn't a throw back to being in treatment. It was different. I was in a special club of cancer people and wasn't sure I could take being there. I may need a few days to digest this one.
Yesterday I volunteered to help at a trade show by staffing a booth for a cancer related organization to help raise money for them. People came up and asked about our mission and talked about their experiences with cancer. They had it. Their wife just died from it. Their wife had it but did not die from cancer but from something else. Their sister, mother, father, cousin, granddaughter, etc., etc., had cancer.
When I was driving home, I felt emotionally drained. I felt I had spent a day in the all cancer all the time life. All I did was talk about cancer, my experiences, and their experiences. It was very difficult. When I got home I was emotionally and physically exhausted - even though I didn't even make it through a whole day.
When you are in cancer treatment, you still don't only talk cancer all the time. You rush to get to the doctor in time and hope you can find a (damn) parking space. You have to go to the grocery store, pay bills, etc.
But yesterday wasn't a throw back to being in treatment. It was different. I was in a special club of cancer people and wasn't sure I could take being there. I may need a few days to digest this one.
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