My life is a series of medical adventures. Somehow there is a giant gap in my calendar for the month of December (but don't tell anyone because I might jinx myself here). But I am sure that will change before then.
Yesterday I went to one of my newer doctors for a conversation, not an exam, to discuss treatment options. I was given a choice of two courses of treatment. One was for a milder program which could take a few months to get going but has fewer long term side effects. The other choice would kick in sooner but had the potential for more side effects. I opted for option one with some steroids to start feeling better sooner.
That was a BAD choice. One of the potential side effects of the steroids is they 'may' cause sleeping problems. Yes they do. We went out last night (and saw Weird Al Yankovic - if you haven't seen him, I recommend him as it was a great show). We didn't get into bed until after 11. I was exhausted and couldn't sleep. I finally did sleep but badly. Guess what? I won't be taking the steroids again and will call my doctor on Monday.
Then I also go back to my back pain doctor for more conversations on Monday. I was supposed to wait another few weeks to see him but he actually had a cancellation for Monday. So that will be two doctor conversations on Monday.
My life really is a series of medical adventures. My calendar is dominated by doctor appointments.
Showing posts with label medical adventures. Show all posts
Showing posts with label medical adventures. Show all posts
The medical roller coaster goes round and round
Yesterday I went to see a new doctor, Dr. P., to see if I have rheumatoid arthritis due to all my aches and pains that never seem to go away. I have a family history of RA from my mother and maternal grandfather. I was referred there by my pain management doctor, Dr. G.
When I got there Dr P said that Dr G had put in his notes that I had myofascial pain/fibromyalgia. I said he had never mentioned fibromyalgia to me at all. At first Dr P said she would clarify that with Dr G and that it would be treated through the pain management department as I already am. By the end of the appointment Dr P said that I probably do have fibromyalgia because I have all the signs after she pushed on all sorts of places that caused pain.
Dr P was also concerned that, because of my family history and symptoms, I could have other ailments. A family history of RA does not mean I will get RA but that I am probably more prone to getting other autoimmune ailments. Dr P also said that because of my history and symptoms this wasn't going to be a one time visit but that I would get all sorts of fun tests. So I left a urine sample, went for blood word, and hand, wrist and ankle x-rays. If everything comes back negative, she will follow up with me in six months. If anything comes back positive, I will see her in three weeks for more fun and games.
On the plus side, its not cancer. On the negative side, these things don't ever really go away. But I really am a healthy person - if I keep saying this, maybe it will come true.
When I got there Dr P said that Dr G had put in his notes that I had myofascial pain/fibromyalgia. I said he had never mentioned fibromyalgia to me at all. At first Dr P said she would clarify that with Dr G and that it would be treated through the pain management department as I already am. By the end of the appointment Dr P said that I probably do have fibromyalgia because I have all the signs after she pushed on all sorts of places that caused pain.
Dr P was also concerned that, because of my family history and symptoms, I could have other ailments. A family history of RA does not mean I will get RA but that I am probably more prone to getting other autoimmune ailments. Dr P also said that because of my history and symptoms this wasn't going to be a one time visit but that I would get all sorts of fun tests. So I left a urine sample, went for blood word, and hand, wrist and ankle x-rays. If everything comes back negative, she will follow up with me in six months. If anything comes back positive, I will see her in three weeks for more fun and games.
On the plus side, its not cancer. On the negative side, these things don't ever really go away. But I really am a healthy person - if I keep saying this, maybe it will come true.
Dealing with test results
We all have medical tests and adventures that provide little insights into our health. Gone are the days where we are at the doctor's mercy for our results. But now with changes in legislation, both current and future, patients will be able to directly access their results.
This is good and bad. Yes there is a bad side to it. Go read this article on it and the one below it. I am all for patients getting their test results promptly. But the problem is understanding and coping with them.
Its fine to get results promptly when they are what is expected. Normal blood counts, benign biopsies, and the like. But what about when they are vague or are not as expected? And how to decipher the doctor shorthand?
This is the balance that we need to decode. When I use the word 'we' I am referring to both the patients and the medical profession. The doctor can not be expected to be able to access and review all test results and get back to the patients promptly. They would end up being buried in paperwork.
However a system needs to be developed where speed of response is included and deciphering of results made available. Part of this is the patient's responsibility. Before a test, ask the doctor and the technician when and how the results will be made available. Make sure you understand what they are trying to find out and what the options are for good and bad results.
If its your standard annual blood tests, maybe you are comfortable with not asking many questions. Or you get sent for a blood test for a possible new condition - what does a negative result mean vs. a positive result? If you have the ailment what is next? If you don't have the ailment, well great they ruled that out so what is next?
As a cancer patient, you get all sorts of wonderful medical adventures with complicated results. We need to know what they mean but we are not waiting for our results. Our cancer diagnoses gives us a special pass for speedy results. But we still need to have our little plan of action for each one. \
Speed here is essential but channels of communication need to be there so that the information can be digested and processed.
This is good and bad. Yes there is a bad side to it. Go read this article on it and the one below it. I am all for patients getting their test results promptly. But the problem is understanding and coping with them.
Its fine to get results promptly when they are what is expected. Normal blood counts, benign biopsies, and the like. But what about when they are vague or are not as expected? And how to decipher the doctor shorthand?
This is the balance that we need to decode. When I use the word 'we' I am referring to both the patients and the medical profession. The doctor can not be expected to be able to access and review all test results and get back to the patients promptly. They would end up being buried in paperwork.
However a system needs to be developed where speed of response is included and deciphering of results made available. Part of this is the patient's responsibility. Before a test, ask the doctor and the technician when and how the results will be made available. Make sure you understand what they are trying to find out and what the options are for good and bad results.
If its your standard annual blood tests, maybe you are comfortable with not asking many questions. Or you get sent for a blood test for a possible new condition - what does a negative result mean vs. a positive result? If you have the ailment what is next? If you don't have the ailment, well great they ruled that out so what is next?
As a cancer patient, you get all sorts of wonderful medical adventures with complicated results. We need to know what they mean but we are not waiting for our results. Our cancer diagnoses gives us a special pass for speedy results. But we still need to have our little plan of action for each one. \
Speed here is essential but channels of communication need to be there so that the information can be digested and processed.
Once again I am in avoidance mode
I am not the brave patient all the time. Well not even most of the time. I have an inner wimp that comes out when faced with large crawly things, big growling dogs, and medical adventures that do not promise to be fun.
I have had tennis elbow for over a year and a half. More than 20 years ago I was told I have ulnar tunnel issues in my elbow. I also have tingling in my hand which is getting worse regardless of how much I wear my brace- all of this is in my right arm. (Which is a good thing if it was in my left arm they would not be able to do much of anything because of lymphedema.) Its not getting better after lots of watchful waiting (I hate that term) and brace wearing and exercises. Monday morning I am going to have an EMG to decide if its tennis elbow, ulnar tunnel, or carpal tunnel and basically decide how to fix this.
Have you ever had an EMG? Its not a fun test. They stick lots of needles in you and then put little electric jolts to see how your nerves react. You don't feel the electricity - maybe a little tingling. But you do feel all the needle pricks.
I had an EMG five years ago when I was diagnosed with bursitis in my hip I got tingling in my lower left leg and foot. I had an EMG to see if there was anything bad going on and there wasn't and we weren't sure how to proceed. Then I was diagnosed with breast cancer and that was put aside for now. I still have tingling in my lower leg and foot and bursitis.
I was told to allow 1-3 hours for my EMG. I can't wait. Three hours of needles in my arm? How fun! Not. I'll suck it up and whine a bit.
Then in August I have another fun test that I am not ready to discuss yet. I am focusing on Monday's fun in an effort to avoid thinking about the next one.
I have had tennis elbow for over a year and a half. More than 20 years ago I was told I have ulnar tunnel issues in my elbow. I also have tingling in my hand which is getting worse regardless of how much I wear my brace- all of this is in my right arm. (Which is a good thing if it was in my left arm they would not be able to do much of anything because of lymphedema.) Its not getting better after lots of watchful waiting (I hate that term) and brace wearing and exercises. Monday morning I am going to have an EMG to decide if its tennis elbow, ulnar tunnel, or carpal tunnel and basically decide how to fix this.
Have you ever had an EMG? Its not a fun test. They stick lots of needles in you and then put little electric jolts to see how your nerves react. You don't feel the electricity - maybe a little tingling. But you do feel all the needle pricks.
I had an EMG five years ago when I was diagnosed with bursitis in my hip I got tingling in my lower left leg and foot. I had an EMG to see if there was anything bad going on and there wasn't and we weren't sure how to proceed. Then I was diagnosed with breast cancer and that was put aside for now. I still have tingling in my lower leg and foot and bursitis.
I was told to allow 1-3 hours for my EMG. I can't wait. Three hours of needles in my arm? How fun! Not. I'll suck it up and whine a bit.
Then in August I have another fun test that I am not ready to discuss yet. I am focusing on Monday's fun in an effort to avoid thinking about the next one.
Obsessing
You do see that it starts to taper down but with every cancer related appointment or medical adventure you get yanked back up to the top level. This is my life. Today, we'll just say I have a couple of cancer related appointments. How's my stress level? I thought I was camouflaging it well but have been accused of crabbiness over the past few days so maybe I am a tad stressed.
We'll see what the day's adventures bring. First I will go to the gym to work off the fattening food I ate yesterday. Then I will get some work done before spending some quality time at the hospital. Then I get to go to a meeting if I am still sane.
There was an article recently in the field of Psycho-Oncology that talked about how the way the patient feels in terms of fatigue, symptom burden and risk perception caused the worry regarding recurrence. But I disagree. Once you have cancer, no matter how you feel, you are going to worry about recurrence. And the field of psycho-oncology? I think all oncologists should have a background in psychology to help their patients cope and improve their bedside manner.
All cancer people obsess over recurrence whether overtly or internally.
Balancing Act
There is a little balancing act here between the opposing sides of:
- detecting new or potential cancers early
- keeping the patient calm
- not over testing or over spending
That lovely phrase, 'With your medical history, we need to be sure... blah, blah, blah', that sends me on to more medical procedures than 10 average human beings combined, I am sure I am responsible for more than my share of high health care costs.
My doctors want to make sure any new or returning cancers are caught early to prevent more expensive and nasty medical adventures. So in return for annual and semi annual and three/four time a year follow up appointments, I am supposed to be happy that they are doing their diligence at this endeavor.
My peace of mind these days is fairly calm, except when I need an ativan to get to a screening which causes a nasty case of 'scanxiety'. I usually can live in the sane world where cancer is only lurking in the back of my brain as opposed to screaming in my frontal lobe. I usually can balance this but any time a doctor says 'with your medical history, we need to be sure... blah, blah, blah' I want to unleash my inner two year old and have a nice little temper tantrum and stick out my tongue at them.
But then there is the 'let's not over test' thought process. I am a big fan of this. I have lots of friends who get PETs, CTs and MRIs to look for cancer cooties. I only get thyroid ultrasounds and mammograms these days - accompanied by lots of poking and prodding. I have no desire to get PETs, CTs, and MRIs personally and if I am sent for one, I may need a temper tantrum
I compare this to normal people who didn't have a mammogram until the age of 40. I started at 23 so I was ahead of the curve because of a benign tumor at that age. I also have had more blood tests and prescriptions than the average person and my current total is 8 surgeries to date (my father beat me on that with a lifetime total of 23). So are the high health care costs my fault? I'm hoping not because I am still here which is the whole point of them in the first place.
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