Monday, January 13, 2014
TED Talk: All it takes is 10 mindful minutes
I love TED talks. I found this talk featuring Andy Puddicombe which compliments what I'm learning in the mind body supportive care trial for smoldering myeloma. It's definitely worth watching and it's short... less than 10 minutes! ;)
Thursday, January 9, 2014
No, no, no doctor - I'm not crazy!
I am headed to Mass General for my second blood draw and to fill out another set of worry / stress / anxiety inventories before starting the 3RP mind/ body supportive care trial for smoldering myeloma. I also have to meet with the psychologist who is running the program. Hmmm. I was told this was just for her to get to know me and my goals for the study.
Fingers crossed after the psych eval they don't kick me out of the study! ;)
Fingers crossed after the psych eval they don't kick me out of the study! ;)
Thursday, January 2, 2014
Mind Over Medicine
A good friend of mine gave me a book called, "Mind Over Medicine: Scientific Proof That You Can Heal Yourself" by Dr. Lissa Rankin, MD.
Now, after just reading the title I was already a bit skeptical! But, since I am participating in a Mind/Body Supportive Care Trial for Smoldering Myeloma, I should probably learn how the mind affects the body, right? After reading this book, I am in no way abandoning the world of Western Medicine, but some parts of the book did give me pause.
This is a little summary of the beginning of the book:
"Through her research, Dr. Rankin discovered that the health care she had been taught to practice was missing something crucial: a recognition of the body's innate ability to self-repair and an appreciation for how we can control these self-healing mechanisms with the power of the mind. In an attempt to better understand this phenomenon, she explored peer-reviewed medical literature and found evidence that the medical establishment had been proving that the body can heal itself for over 50 years.
Using extraordinary cases of spontaneous healing, Dr. Rankin shows how thoughts, feelings, and beliefs can alter body's physiology. She lays out the scientific data proving that loneliness, pessimism, depression, fear, and anxiety damage the body, while intimate relationships, gratitude, meditation, spirituality/religion, and authentic self-expression flip on the body's self healing processes."
This book contains tons of stories about the placebo and nocebo effects and spontaneous remissions. Just a couple of the examples, which I found absolutely fascinating:
An article from the New England Journal of Medicine featured an orthopedic surgeon who specialized in surgeries for patients who had debilitating knee pain. "The patients in one group of the study got Dr. Moseley's famous surgery. The other group of patients underwent an elaborately crafted sham surgery, during which the patient was sedated, three incisions were made in the same location as in the real surgery, and the patient was shown a prerecorded tape of someone else's surgery on the video monitor. Dr. Mosley even splashed water around to mimic the sound of the lavage procedure. Then he sewed the knee back up. As expected, one third of the patients getting the real surgery experienced resolution of their knee pain. But what really shocked the researchers was that those getting the sham surgery had the same result! In fact, at one point in the study, those getting the sham surgery were actually having less knee pain than those getting the real surgery, probably because they hadn't undergone the trauma of the surgery. What did Dr. Moseley's patients think about the study results? As one World War II veteran who benefited from Dr. Moseley's placebo knee surgery said, 'The surgery was two years ago and the knee has never bothered me since. it's just like my other knee now.' "
"One study showing that patients in a control group for a new chemotherapy drug were given nothing but saline, yet they were warned it could be chemotherapy, and 30 percent of them lost their hair. In another study, hospitalized patients were given sugar water and told it would make them throw up. Eighty percent of them vomited."
This is just a small sampling of the studies referenced in the book. Mind Over Medicine also references the "relaxation response" which was discovered by Dr. Herbert Benson of the Benson-Henry Institute for Mind Body Medicine at Massachusetts General Hospital, where I am completing the smoldering myeloma mind/body study using the Relaxation Response Resiliency Program (3RP). Dr. Benson named the physiological changes that meditating people experienced "the relaxation response," which is the counterbalance to the "fight or flight response." These physiological changes that occur during the "relaxation response" include sharp drops in heart rate, respiratory rate, metabolic rate, and blood pressure.
Something to think about! ;)
Now, after just reading the title I was already a bit skeptical! But, since I am participating in a Mind/Body Supportive Care Trial for Smoldering Myeloma, I should probably learn how the mind affects the body, right? After reading this book, I am in no way abandoning the world of Western Medicine, but some parts of the book did give me pause.
This is a little summary of the beginning of the book:
"Through her research, Dr. Rankin discovered that the health care she had been taught to practice was missing something crucial: a recognition of the body's innate ability to self-repair and an appreciation for how we can control these self-healing mechanisms with the power of the mind. In an attempt to better understand this phenomenon, she explored peer-reviewed medical literature and found evidence that the medical establishment had been proving that the body can heal itself for over 50 years.
Using extraordinary cases of spontaneous healing, Dr. Rankin shows how thoughts, feelings, and beliefs can alter body's physiology. She lays out the scientific data proving that loneliness, pessimism, depression, fear, and anxiety damage the body, while intimate relationships, gratitude, meditation, spirituality/religion, and authentic self-expression flip on the body's self healing processes."
This book contains tons of stories about the placebo and nocebo effects and spontaneous remissions. Just a couple of the examples, which I found absolutely fascinating:
An article from the New England Journal of Medicine featured an orthopedic surgeon who specialized in surgeries for patients who had debilitating knee pain. "The patients in one group of the study got Dr. Moseley's famous surgery. The other group of patients underwent an elaborately crafted sham surgery, during which the patient was sedated, three incisions were made in the same location as in the real surgery, and the patient was shown a prerecorded tape of someone else's surgery on the video monitor. Dr. Mosley even splashed water around to mimic the sound of the lavage procedure. Then he sewed the knee back up. As expected, one third of the patients getting the real surgery experienced resolution of their knee pain. But what really shocked the researchers was that those getting the sham surgery had the same result! In fact, at one point in the study, those getting the sham surgery were actually having less knee pain than those getting the real surgery, probably because they hadn't undergone the trauma of the surgery. What did Dr. Moseley's patients think about the study results? As one World War II veteran who benefited from Dr. Moseley's placebo knee surgery said, 'The surgery was two years ago and the knee has never bothered me since. it's just like my other knee now.' "
"One study showing that patients in a control group for a new chemotherapy drug were given nothing but saline, yet they were warned it could be chemotherapy, and 30 percent of them lost their hair. In another study, hospitalized patients were given sugar water and told it would make them throw up. Eighty percent of them vomited."
This is just a small sampling of the studies referenced in the book. Mind Over Medicine also references the "relaxation response" which was discovered by Dr. Herbert Benson of the Benson-Henry Institute for Mind Body Medicine at Massachusetts General Hospital, where I am completing the smoldering myeloma mind/body study using the Relaxation Response Resiliency Program (3RP). Dr. Benson named the physiological changes that meditating people experienced "the relaxation response," which is the counterbalance to the "fight or flight response." These physiological changes that occur during the "relaxation response" include sharp drops in heart rate, respiratory rate, metabolic rate, and blood pressure.
Something to think about! ;)
Sunday, December 8, 2013
Thankful Tree, Spartan Race, BMBs, and Neurologist
How is it already December? This year, for the month of November, J and I completed our "Thankful Tree" like we did last year. The teacher in me enjoys such endeavors. Unfortunately, this year, due to the fact that we have a very, very active little monster in our house named Hennessy, this was the only place we could display the Thankful Tree to keep it from being attacked...
And, yes, we are the only people left in the world that have an old school TV.
In other news, J and I had a very random encounter at the Spartan Race at Fenway Park in Boston a couple weeks ago.
J has an uncanny ability to spot and/or recognize the most random people. As we were looking for registration, J decided to approach one of the Spartan Race volunteers to figure out where the heck we were supposed to go. As we started to speak with this volunteer J all of a sudden said, "Hey, you did her bone marrow biopsy!"
Hmmm. Huh? We realized that yes, this was the nice PA named Zach who did my second bone marrow biopsy at Dana-Farber. I say "nice PA" but I really should say, "the PA who did not hit my sciatic nerve." Thank you, Zach for not hitting my sciatic nerve during my second bone marrow biopsy. Zach and I both agreed that we would never have recognized each other as I was facing away from him during the entire procedure. Heh. Zach told me to make sure I request to have him for my next bone marrow, which should be sometime next year. Indeed. I definitely will.
And finally, a little update on my shoulder situation.
This could be me. Wishing I could have an arm replacement. Cursing the idiot nurse who did my flu shot into my shoulder joint.
I went back to DFCI to have Dr. R review the MRI of my shoulder like the orthopedist suggested. Dr. R concluded that the abnormality on my bone is not an infection of the bone or myeloma related. Phew. It is in fact a traumatic bone injury from the needle. Yep. Traumatic bone injury from a flu shot! The MRI also shows bursitis and tendinitis.
I had the EMG test. The orthopedic doctor I saw recommended this test because he suspected I might have nerve involvement which could be causing my pain and weakness of my deltoid muscle. Ouch. Not the most comfortable test. The EMG showed abnormalities in my axillary and suprascapular nerves (which affects the deltoid and infraspinatus muscles) and the neurologist I saw last week suspects that I have something called "brachial neuritis". The upshot of the neuro consult was that nerve reinnervation takes forever to occur and 18 months from now (yes, that's a year and a half) whatever strength I regain will be it. Very disconcerting and I really hope my nerves get their act together because I'd like to be able to use my left arm again. :(
Wednesday, November 20, 2013
Back to DFCI... wait, it's not January?!
I decided to send an email to Dr. R to see if I could drop off the MRI of my shoulder for him to take a look at when he got a chance. I also mentioned to him the 1.75cm mass that was found on (in?) my upper left arm during PT while the therapist was massaging my shoulder. She had told me to show my doctor (which one?!) so I figured I'd mention it to him. I sort of blocked that out and never told anyone. Whoops. I kind of thought he would defer to my PCP. Anyway. Dr.R responded right away and said that he would like to see me to see the MRI and take a look at my "little lump." He said there was "no mad rush but suggest we squeeze you in fairly soon."
Baaaack to Dana-Farber I go!
Baaaack to Dana-Farber I go!
Tuesday, November 19, 2013
Orthopedic Surgeon says, "Did you get hit with a hammer?"
So, I met with an orthopedic surgeon named Dr. T to go over the next steps in treating/resolving my flu shot induced shoulder pain. During my appointment, he reviewed the MRI films and the radiology report. Overall, the MRI showed inflammation, bursitis, partial bursal tears, a collection of fluid (probably the vaccine!), and tendinitis. Not, "terrible things" as Dr. T put it and nothing warranting surgery, which already knew. However, he was concerned when he saw the state of my bone. He said it looked like I had been hit with a hammer.
He asked me if I had been having fevers or night sweats because he was concerned about infection of the bone. I told him I’ve had fevers for 4 years and had smoldering myeloma. He asked me when I was seeing my doctor. I said I actually just saw him and he replied, “Oh so he saw these images?” I said no and that I had told Dr. R about my shoulder pain but didn’t show him the MRI. I mean...why would I?! Dr. T said, “Your doctor really needs to see this.”
I totally freaked. Inside, of course. Well, partially outside. Not unusual for me these days.
In my head thinking rationally I knew that myeloma does not cause edema/contusion of the bone (right??) but he kept going on about how the bone was abnormal and Dr. R needed to look at the MRI.
Dr. T wondered outloud, "Is this myeloma? Is this infection? Is this where he jammed in the needle? Not really sure."
He brought in another named Dr. M who thinks I might have nerve damage and/or parsonage turner syndrome caused by the flu shot. Dr. M wants me to have an EMG to check for nerve damage. More needles! Basically, bottom line: nerve damage or not, there is nothing these doctors can do for me. I need to provide my shoulder time / physical therapy and the pain/loss of motion “may” resolve within 1 year or up to 2-3 years. Or, I could have permanent nerve damage if it's parsonage turner syndrome. Sweet.
As for my bone? Eh...not really sure what to do about that. Going to see if I can drop off the MRI at DFCI for Dr. R to review. And the beat goes on... :)
He asked me if I had been having fevers or night sweats because he was concerned about infection of the bone. I told him I’ve had fevers for 4 years and had smoldering myeloma. He asked me when I was seeing my doctor. I said I actually just saw him and he replied, “Oh so he saw these images?” I said no and that I had told Dr. R about my shoulder pain but didn’t show him the MRI. I mean...why would I?! Dr. T said, “Your doctor really needs to see this.”
I totally freaked. Inside, of course. Well, partially outside. Not unusual for me these days.
In my head thinking rationally I knew that myeloma does not cause edema/contusion of the bone (right??) but he kept going on about how the bone was abnormal and Dr. R needed to look at the MRI.
Dr. T wondered outloud, "Is this myeloma? Is this infection? Is this where he jammed in the needle? Not really sure."
He brought in another named Dr. M who thinks I might have nerve damage and/or parsonage turner syndrome caused by the flu shot. Dr. M wants me to have an EMG to check for nerve damage. More needles! Basically, bottom line: nerve damage or not, there is nothing these doctors can do for me. I need to provide my shoulder time / physical therapy and the pain/loss of motion “may” resolve within 1 year or up to 2-3 years. Or, I could have permanent nerve damage if it's parsonage turner syndrome. Sweet.
As for my bone? Eh...not really sure what to do about that. Going to see if I can drop off the MRI at DFCI for Dr. R to review. And the beat goes on... :)
Sunday, November 17, 2013
11/12/13: Unsettling conversations with the myeloma "rock star"
So I saw Dr. R this past week. My appointment at DFCI was scheduled for 4:30 but I knew from past experience we would NOT be out of there until at least 7:00 or 8:00. ;) Via Patient Gateway I knew all my results ahead of time… my m-spike was up (which is the case at every appointment) and my CRP was high. Everything else looked pretty stable. In my opinion.
Prior to meeting with Dr. R I met with a myeloma specialist from Milan. To be completely honest, I'm not sure I understood one word she said and visa versa. Lost in translation! Oh well.
A while later Dr. R came in. He told me I was, "Last but certainly not least." Heh. I went into the appointment sort of assuming that I would hear, “Oh everything looks good, small increase, stable, see you in 3 months.” Such wasn’t the case overall. I have been having fevers since I was diagnosed with MGUS 4 years ago and I was reclassified as SMM last summer. After seeing numerous other specialists, Dr. R and my ID specialist concluded that the plasma cells were driving/causing my fevers. Anyway, during this appointment I actually had a fever of 102.2. After him having witnessed me having a fever for the first time - I’d never had one at an appointment before - he reiterated again the plasma cells are causing the fevers and he has seen periodic fevers happen in people with smoldering myeloma or symptomatic myeloma. He was also concerned my CRP was up as this is indicative of the level of IL-6 activity which is important in keeping myeloma cells alive/growing. So that's not good.
He told me to make sure to get a prescription for biaxin specifically if I do develop a sinus infection, respiratory infection, etc this winter along with fever as biaxin targets IL-6. He said he might consider at this time putting me on biaxin on a continuous basis. Biaxin is actually used in treatment of multiple myeloma in combination with revlimid and dexamethasone. But he said being young and female that probably wouldn’t be the best as continuous antibiotics can cause yeast / stomach upset. He said that if my m-spike continues to creep up and my BMBs increase we’ll need to “start the conversation” about treatment which may be “an antibody, vaccine, or immunomodulator.” I almost fell over that he even brought up the "T" word as I truly pray I am not there yet and won't be for a long, long, time.
Dr. R did say he believes my condition is evolving as my m-spike has grown consistently over the last 4 years as well as the fevers I've continued to experience. He again talked about how aspirin is going to be used in clinical trials for MGUS/SMM patients as it targets IL-6. He suggested continuous aspirin for me back in April but I stopped taking it but I should probably try to start taking it again. He also suggested trying naproxen in addition to daily aspirin to treat the fevers when I have them. I swear the amount of Tylenol/Advil/aspirin/naproxen I've taken over the last 5-10 years is going to cause me severe liver damage! He wants me to go back in 2-3 months for blood work and 24 hour urine. Monitoring me very, very carefully is the plan. Awesome.
I mentioned my shoulder pain from the wrongly administered flu shot and told him I had an MRI and had been referred to an orthopedic surgeon who I would be seeing soon. He was apologetic but nothing he can really do about that obviously. At the end of the appointment and to some degree "lighten" the mood I showed him a photo that was made by Myeloma Survival.
http://www.myelomasurvival.com/1/post/2013/11/to-transplant-or-not-to-transplant-which-has-a-multiple-myeloma-survival-rate-advantage-as-presented-by-dr-paul-richardson-of-dana-farber-cancer-institute.html
He totally cracked up. Wellllll...he IS a myeloma rock star. AND we actually walked out of Dana-Farber around 7:00PM - not too bad. AND they actually now have a receptionist working there now until 8:00PM.
Hmmm I wonder why? ;)
Prior to meeting with Dr. R I met with a myeloma specialist from Milan. To be completely honest, I'm not sure I understood one word she said and visa versa. Lost in translation! Oh well.
A while later Dr. R came in. He told me I was, "Last but certainly not least." Heh. I went into the appointment sort of assuming that I would hear, “Oh everything looks good, small increase, stable, see you in 3 months.” Such wasn’t the case overall. I have been having fevers since I was diagnosed with MGUS 4 years ago and I was reclassified as SMM last summer. After seeing numerous other specialists, Dr. R and my ID specialist concluded that the plasma cells were driving/causing my fevers. Anyway, during this appointment I actually had a fever of 102.2. After him having witnessed me having a fever for the first time - I’d never had one at an appointment before - he reiterated again the plasma cells are causing the fevers and he has seen periodic fevers happen in people with smoldering myeloma or symptomatic myeloma. He was also concerned my CRP was up as this is indicative of the level of IL-6 activity which is important in keeping myeloma cells alive/growing. So that's not good.
He told me to make sure to get a prescription for biaxin specifically if I do develop a sinus infection, respiratory infection, etc this winter along with fever as biaxin targets IL-6. He said he might consider at this time putting me on biaxin on a continuous basis. Biaxin is actually used in treatment of multiple myeloma in combination with revlimid and dexamethasone. But he said being young and female that probably wouldn’t be the best as continuous antibiotics can cause yeast / stomach upset. He said that if my m-spike continues to creep up and my BMBs increase we’ll need to “start the conversation” about treatment which may be “an antibody, vaccine, or immunomodulator.” I almost fell over that he even brought up the "T" word as I truly pray I am not there yet and won't be for a long, long, time.
Dr. R did say he believes my condition is evolving as my m-spike has grown consistently over the last 4 years as well as the fevers I've continued to experience. He again talked about how aspirin is going to be used in clinical trials for MGUS/SMM patients as it targets IL-6. He suggested continuous aspirin for me back in April but I stopped taking it but I should probably try to start taking it again. He also suggested trying naproxen in addition to daily aspirin to treat the fevers when I have them. I swear the amount of Tylenol/Advil/aspirin/naproxen I've taken over the last 5-10 years is going to cause me severe liver damage! He wants me to go back in 2-3 months for blood work and 24 hour urine. Monitoring me very, very carefully is the plan. Awesome.
I mentioned my shoulder pain from the wrongly administered flu shot and told him I had an MRI and had been referred to an orthopedic surgeon who I would be seeing soon. He was apologetic but nothing he can really do about that obviously. At the end of the appointment and to some degree "lighten" the mood I showed him a photo that was made by Myeloma Survival.
http://www.myelomasurvival.com/1/post/2013/11/to-transplant-or-not-to-transplant-which-has-a-multiple-myeloma-survival-rate-advantage-as-presented-by-dr-paul-richardson-of-dana-farber-cancer-institute.html
He totally cracked up. Wellllll...he IS a myeloma rock star. AND we actually walked out of Dana-Farber around 7:00PM - not too bad. AND they actually now have a receptionist working there now until 8:00PM.
Hmmm I wonder why? ;)
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