If only everybody were like that.

Her post reminded me of the countless times I’ve had similar interactions with people and the poor judgement they’ve expressed in commenting or reacting. It’s a subject I’ve pondered writing about a lot in the past, and she’s provided the spark with which to do so.

I’ve never been one to move slowly. I grew up in New York where you walk fast, regardless of if you actually have a specific place to be. It’s just how things are done. And I’m not about to change my behavior just because I’m sitting down, so I still tend to move at a decent pace. And for whatever reason, this seems to give people the impression that making comments is OK. The one I get the most frequently is something to the effect of, “hey, slow down! You might get a speeding ticket!”

Really? I mean, really?? I usually shrug it off and if I respond at all, it’s a polite smile as I move ahead. But it’s irritating. And it’s far from original or clever. I don’t make comments to the effect of, “hey, the tortoise is going to beat you!” Or, “hey, looks like the grim reaper is catching up with you!” What gives you, somebody I don’t know, the right to make a comment relating to my disability? What in the world makes you think that’s acceptable?

The worst that I’ve heard so far was an older man I had passed in the hospital who was walking with his wife. They were walking fairly far apart from each other, which seems to happen a lot, and consequently blocking off the entire hallway for everybody else. This particular hallway is wide enough for at least four people to pass narrowly side-by-side, but a lot of the time two people walking together, yet widely apart, will block the whole thing. I said “excuse me,” loudly enough for them to hear, and the man stopped dead in his tracks before turning around, and only then stepping aside. Now, this is a cardinal sin in New York foot traffic patterning. You move aside before stopping, always. New York aside, this also just seems like common sense.

As I passed them, he made a comment to the effect of, “you should put a bell on that thing!” OK, he probably meant it like a bicycle. Both have wheels. Whatever. I let it slide and continued on. Then the speeding ticket comment came a second or two later. I ignored him again as I continued further away. I then heard a bit more quietly, and I suspect possibly not intended for my ears, something to the effect of, “hey, that kind of looks like fun.”

People who know me know that I’m not the type to get aggressive or angry, especially with people I don’t know. I give people the benefit of the doubt and let most things slide, figuring there isn’t much point in getting in people’s faces and that most of the time, however misguided, people mean well. I’ve always been an easy-going person, and I find that being angry and spiteful just requires too much energy to be worth it. But this was, without a doubt, the closest I’ve come to blowing up in someone’s face. The last comment took the cake, and my mind was rife with all of the harsh things I could have said in retort.

But I didn’t. And although there’s a part of me that wishes I had, at the same time I would have said things that would have brought me down to that person’s level (well, probably even lower). Which is not the person I aim to be.

I had a conversation a while back with a classmate about public illness. And he recognized that many people who have adverse health situations just want to be treated the same way as everybody else, without a spotlight shined on their differences. Now, I don’t purport to speak for everybody with a disability, but this seems like common courtesy to me. Just because I’m in a chair doesn’t mean you can make asinine comments. Pleasantries are fine, and a bit of discretion in speaking goes a long way.

Most of the things I’ve heard people say have been fairly benign, and stories I’ve heard from others dealing with a disability have been much worse. In that sense, I’ve been fortunate so far. And I do feel as though my reactions have changed over time and become more just a recognition of the comments being a reflection purely of the person making them. So they bother me less than they used to.

But please. Don’t tell me I need a bell, and don’t warn me about speeding tickets. I would very greatly appreciate it.

I had an interesting discussion with some friends recently over the concept of gene patents. If you hadn’t heard, U.S. District Judge Robert Sweet in NY struck down a patent that had been granted to Myriad Genetics for the BRCA1 and BRCA2 genes present in many cases of breast cancer.  (The NYTimes has also covered this quite well).  He stated that regardless of the form of DNA being used, the fundamental bit of data is still human DNA, something that occurs in nature, and something that is inherently not patentable.

This is huge.

BRCA is a prominent gene family in oncology because it was one of the first to be identified and sequenced, and we now have tests that can examine, purely based on genetics, if a person is a carrier for a mutation. From that, we can assign a probability to their likelihood of developing breast cancer. Some women go as far as to have prophylactic mastectomies based purely upon family history and the BRCA screen. I would argue that sure, patent the testing process and the algorithms behind the analysis of the results, but you can’t patent the gene itself.

Myriad argues that because of the form the DNA is in, effectively a plasmid outside a human cell, that it should be patentable.  And they have good reason to argue for patent protection: money.  Because of their patent, they are the only company marketing a test for the BRCA1/2 genes in the US.  At a cost of over $3,000 per test.  According to the NYTimes article linked above, that test is available in Canada, where the patent is not recognized, for under $1,000.  This makes the test available to far more people who might benefit from it, thus doing a far greater good.

Now, I’m not trying to argue that money and capitalism are evil.  Far from it.  Some seem to argue that they shouldn’t be able to patent the test itself. I think that’s disingenuous, because if they’re not able to assert some financial gain, what’s the point of investing R&D money?  In that case, it’s the patients who ultimately suffer. The company has spent money to develop a test that is reliable and reproducible, and they should be able to profit from it. And there is absolutely nothing wrong with companies profiting off such processes. But patenting aspects of the human genome is not the way to do it.

I think this gets even more complicated with cancer genes, because mutations are not exactly the same. The question comes down to, what exactly are they patenting if they’re trying to patent a gene? We all have copies of the BRCA gene, and most of us go through life without having any problems with them. This isn’t because our genes don’t mutate. Conversely, we all have genes mutate fairly regularly. Now, the miniscule number of mutations that occur, compared to even a tiny calculated margin of error, is really remarkably exquisite. But nonetheless, they do occur regularly. The thing is, we have mechanisms to detect and resolve mutations. But in people who have problems with mutation detection/correction, cancer can occur.

With certain cancers, these mutations tend to occur in common locations. This is often due to the affected gene’s role in mutation repair – you need a mutation in the DNA repair machinery to develop cancer, in addition to a separate mutation in a gene that affects cell growth. This is known as the two-hit hypothesis. In breast cancer, BRCA is one of the identified mutations. However, the specific mutation can vary drastically from one person to another. The mutation can occur anywhere within that gene. So what exactly are they patenting? The whole gene? If it’s a specific mutation, that’s pointless since there’s so much variability. This is what confuses me – I don’t get exactly what they’re claiming is patentable.

It sounds as though Myriad is trying to patent genes directly using a legal end-run. And saying that somebody should be able to patent the entire BRCA gene based upon certain standard elements doesn’t seem right to me. That’s akin to saying that I should be able to patent hair and then go sue anybody who tries to work as a barber.  Additionally, what if those elements are found in other locations within the genome?  This is not unlikely.  Does their patent automatically apply to those genes as well?  If not, what is the legal basis for differentiation?

Companies need to be able to assert protection of their financial investments into new technologies. They need to be able to recoup their initial investments, provide value to investors, and profit to drive growth.  But patenting elements of the human genome is not the way to do it.  We don’t patent hair, flowers or other things found in nature.  Genes are no different.

Kudos to Judge Sweet. Finally, someone who gets it.

First, a brief disclaimer.  Of course, none of what’s said in here should be construed as any kind of guidance or medical advice.  I’m a student, I don’t know much of anything at this point, and this is a complex matter that women should discuss with their physicians before making any decisions with regard to their personal health.  What’s contained herein is merely my opinion on the current debate.

There is some criticism of the US Preventative Services Task Force (USPSTF) in that it does not contain an oncologist among the panel.  The argument would be that it did not need to – although it surely would have helped for PR reasons. Actually, the report could have used some serious professional PR consultation, but that’s a whole separate story.  The study, and I would HIGHLY encourage you to read over the full study in detail so you’re familiar with what’s being talked about in the news, was done as a public health study using purely epidemiological analysis. Most mass guidelines are written as a result of epidemiological data in this manner.  In fact, I don’t know how one would go about writing large-scale guidelines like this without basing it on epidemiology, and as such, MPHs and epidemiologists are best suited to analyze the data. They’re based on statistics, reports, other studies and previously collected data. One does not need to intimately know how to treat a challenging case of aggressive metastatic infiltrating ductal carcinoma or the technology behind mammography to analyze data showing its efficacy or lack thereof.  That’s for the public health policy wonks.

Unfortunately, this fact has recently been latched onto by people who wish to politicize this whole thing.  On Thursday I saw Rep. Debbie Wasserman-Schultz on television distorting the facts and making quite an egregious politicization of this report.  Here’s the whole interview:

She’s far from the only one to attempt to politicize the report, and that’s one of the most troubling things to come from it.  Some thoughts on the interview.  Robert Bazell states:

this is not a study, that’s one of the things about it that’s a misnomer. People say this is science.  This is an obscure federal agency called the US Preventative, uh, Health Task Force that’s setup to analyze other studies.  And it looks at some of what things that are science.  It is science to say that 6.1 lives are saved per 1,000 women in their forties and 5.4 per 1,000 fifty and above.  That’s science.  But to decide which is more valuable, that’s a value judgment, that’s politics, that’s not science.

I feel that calling the USPSTF “obscure” just because the average citizen is unaware of what they do is a bit disingenuous.  The agency has been around for twenty-five years, and their mission is:

to evaluate the benefits of individual services based on age, gender, and risk factors for disease; make recommendations about which preventive services should be incorporated routinely into primary medical care and for which populations; and identify a research agenda for clinical preventive care.

Bazall says that what they do is not science.  That’s not exactly true.  Analyzing data that arise from other studies is science.  The USPSTF report also didn’t say “6.1 lives are saved per 1,000 women in their forties and 5.4 per 1,000 fifty and above.”  It states that the number of women to be screened is “1904 (CI, 929 to 6378) to prevent 1 breast cancer death in women aged 39 to 49 years,” 1339 women between 50 and 59 to achieve the same benefit, and 377 women between 60 and 69.  These are the numbers at the core of the controversy surrounding the USPSTF recommended guidelines.

When it comes to screening for Down Syndrome in expectant mothers, there is a scientific reason it has historically not been indicated until women are thirty-five or older (although the American College of Obstetrics and Gynecology has recently recommended that screening be offered to all women, regardless of age): thirty-five is the age at which the risk of having a child born with Down Syndrome becomes greater than the risk of complications from the actual testing procedures.  I’ve been unable to find any studies that look specifically at complications due to biopsies and other procedures that are used in diagnosing and treating breast cancer, or the myriad risks from overdiagnosis, although I’m sure some have to have been done.  I would really like to compare results of studies like these to the tests looking at screening mammography.  As best I can tell, there have been some smaller studies done on the complications of overscreening and overdiagnosis, but we need a detailed, thorough study on the various risks and complications in order to know for sure.

It would seem logical to me that the determination of when women should be screened, like with Down Syndrome screening, should correlate to a point at which the risk of complications from not having the test becomes greater than the risk of complications due to having the test.  To be sure, the death of a woman due to a breast tumor that could have easily been diagnosed with a simple mammogram is a tragedy.  But is it worth preventing that death by screening 1,904 women if two women in that group who wind up negative for breast cancer die due to complications from the unnecessary procedures they receive?  Now, I completely made up that second number.  My point is that with all this talk of complications due to unnecessary testing, I would really love if it somebody has some real facts they can point me to.  Until we have numbers to compare, the difference between 1:1904 and 1:1339 is a value judgment. Or a cost judgment. And although insurance actuaries place numerical values on life all the time, it’s hard to quantify that kind of thing at this level.  When people speak of “cost” when it comes to unnecessary testing, it isn’t just financial cost.  It’s a far more complex issue than that.  The USPSTF acknowledges that further research on overdiagnosis is needed:

In general, more studies of overdiagnosis, including comparisons of lifetime breast cancer incidence among similar screened and unscreened women, would be helpful. Studies on overdiagnosis might also include long-term follow-up of women with probable missed cases of DCIS on the basis of microcalcifications that were missed in an earlier mammogram

Chris Matthews continues on to say that it’s “common sense” that all women should examine their own breasts, commenting on the portion of the USPSTF’s report that recommends against teaching breast self examination (BSE).  Thankfully, Bazell corrects him that the report does not say women shouldn’t regularly examine their own breasts and note any changes – it says that the way BSE has been formally taught is not recommended as it does not provide any improvement in mortality.

For the teaching of BSE, there is moderate certainty that the harms outweigh the benefits.

…

Adequate evidence suggests that teaching BSE does not reduce breast cancer mortality.

…

Two large trials of teaching BSE outside the United States (7) demonstrated no mortality benefit in the intervention groups.

In two randomized, controlled trials with 5 to 10 years of follow-up, both conducted outside the United States, breast cancer mortality rates were similar in women instructed in BSE and in noninstructed controls

…

One study indicated that anxiety was not a concern with BSE. The 2 available trials (20, 21) indicated that more additional imaging procedures and biopsies were done for women who performed BSE than for control participants.

…

The USPSTF now recommends against teaching BSE (D recommendation), replacing the previous statement of insufficient evidence.

This is in line with recommendations from the American Cancer Society, the Canadian Task Force on Preventive Health Care and the World Health Organization.

Then comes Rep. Wasserman Schultz.  I have a big problem with how she presents the report, because she misrepresents the facts by acting as though it is intentionally trying to kill women.  First and foremost, before even getting into the details, this is what the USPSTF has actually stated in their report:

The USPSTF recommends against routine screening mammography in women aged 40 to 49 years. The decision to start regular, biennial screening mammography before the age of 50 years should be an individual one and take patient context into account, including the patient’s values regarding specific benefits and harms. This is a C recommendation.

It doesn’t say that women of this age should not receive mammography.  It says that the old recommendation that women of this age automatically receive a mammogram every year shouldn’t apply to every woman without consideration to her unique details.  This should always be the case.  Women should be fully aware of all of the risks and complexities involved in screening and should make the decision in concert with their physician after all of these factors have been taken into account.  For those women with greater risk, they will need to test even more judiciously.  On to Rep. Debbie Wasserman Schultz.

This task force, Chris, is telling women 40-49 “no mammogram in that ten year period.  Oh, by the way, don’t do breast self exam either” and telling doctors in the same set of recommendations that clinical breast exams are inappropriate also.  They’re leaving women forty to forty-nine with nothing…  Their recommendations actually say, after they released them, that women should not do breast self exam… Now, it’s one thing to say that we shouldn’t, you know, systematically teach breast self exam, they are recommending against breast self exam.  You have most women who are forty to forty-nine catch their breast cancer themselves through a breast self exam.

Well, Rep. Wasserman Shultz, the recommendations do not “actually say” that.  As quoted above directly from the report, the USPSTF does not recommend against women examining their own breasts – they do recommend against the structured teaching of breast self exam.  Big difference.  The report says nothing about women examining themselves, other than that they receive subsequently more “additional imaging procedures and biopsies.”  And as you’ve already read, the USPSTF does not tell women “no mammogram in that ten year period.”  It frustrates me when people so egregiously misrepresent the facts, and this reeks of a disgusting level of politicking.  I don’t know whether she just hasn’t read and thought about the actual report and just went on national television to respond to the hyperbole with more of the same, or she has read it and thinks she can just gloss over the facts in the hopes that other people won’t read it.  But neither one is something a person in her position in government should be doing. If she can’t even be bothered to read and get a small report right, should her constituents really trust her to get a two-thousand page healthcare reform proposal right?

One of the large studies referenced observed 120,000 women and found “no difference” between the BSE and the control groups with respect to catching cancers and the stage at which they were caught.  The other large study tracked over 267,000 women and again found no difference in the discovery or severity of lesions between women formally trained in BSE and those without formal education.  An article published in the Journal of Family Practice that looked at several other studies found, in fact, that:

Breast self-examination has little or no impact on breast cancer mortality and cannot be recommended for cancer screening (strength of recommendation [SOR]: A, based on a systematic review of high-quality randomized, controlled trials [RCTs]).

It also states the same conclusion of the USPSTF that there was no reduction in mortality found in women who perform BSE.  The article goes on to suggest that clinical breast exams by a physician are better, although using proper and deliberate technique is critical.  Interestingly, it cites a very large Canadian study that suggests that when done properly, “clinical breast examinations may be as effective as a mammography screening program.”

So in summary, studies done on nearly 400,000 women have failed to show any benefit to formal BSE training, as compared to women being aware of their bodies and being aware of any changes that occur.  Additionally, the USPSTF report states:

For BSE, sensitivity ranges from 12% to 41%, lower than that of CBE and mammography, and is age-dependent

Sensitivity is a measure of the ability of a test to assess the absence of disease.  It is calculated as the number of people who have a condition and test positive for it divided by the total number of people who have that disease (which is equal to the number of people who have it and test positive for it plus the number of false negatives, or those who have it but test negative for it).  A test that is highly sensitive is one with very few false negatives.  In other words, a negative test result means that someone is actually negative.  So highly sensitive tests are used to rule out a disease because they have a low false negative rate.  Tests with a low sensitivity have a lot of false negatives.  A sensitivity range of 12-41% means that of those women who do actually have breast cancer and do a BSE, 59-88% will falsely test negative via BSE.  This doesn’t say anything about false positives, but it does say that BSE is not very good at detecting tumors.

Clearly, time and money invested in BSE could be far better spent put toward research that can help drive more effective treatment without any impact on mortality.  Yes, women should absolutely be aware of the shape and nature of their breasts.  But just because “common sense” says that women find breast cancer by BSE and as such we should invest in teaching structured BSE doesn’t make it true.  Often times, evidence-based medicine will challenge those “common sense” beliefs by presenting numerical data that contradict them.  And as surprising as that may be, numerical data are grounded in science and data.  ”Common sense” is not always so.

Furthermore, her statement that the USPSTF said “clinical breast exams are inappropriate also” is just plain wrong.  What the USPSTF actually said was:

The USPSTF concludes that the current evidence is insufficient to assess the additional benefits and harms of clinical breast examination beyond screening mammography in women 40 years or older. (I statement)

This is neither a statement for or against CBE.  What it actually says is that there is insufficient evidence to say whether CBE provides any benefits or harm beyond mammography. This is FAR from what Rep. Wasserman Schultz has said.

I’m not sure where she gets her statement that “most women..catch their breast cancer themselves through a breast self exam.”  A study published in the journal “Cancer” specifically looked at women, age 40-49, who were diagnosed with breast cancer.  It found that while most, 58.1% did catch their own breast cancer, less than half of the women who discovered their own breast cancer, 20.6%, discovered it through a breast self exam. The majority of women who discovered their own cancer, 37.5%, did so incidentally.  It also means that 79.4% of breast cancers in the study group were discovered by a means other than BSE.  Again, that doesn’t mean women should not be aware of and pay attention to any changes in their breast tissue.  It does, however, mean that Rep. Wasserman Schultz is stating as fact things that do not seem based in actual evidence.

Rep. Wasserman Shultz continues:

And on top of that, what they’re saying is, well now if you’re forty to forty-nine, you should just talk to your doctor about your risk.  About 75% of women who have breast cancer didn’t have any risk, weren’t in a higher risk category.  I was in a higher risk category, didn’t even know it, until I found my lump myself and went to the doctor.  So these recommendations are really patronizing because they’re presuming that women can’t handle more information and make a rational decision with their healthcare provider.  It’s really outrageous.

I tried to find evidence either supporting or refuting the “75%” comment, and couldn’t find anything.  What I did find was one statement on an alternative medicine site that said “70-80%” of women with breast cancer have no known factors, and something on WebMD that said “75% of all women with breast cancer have no known risk factors.”  But this does not present any supporting evidence or references, and is far from scientific. Additionally, the Sprecher Institute for Comparative Cancer Research at Cornell University further suggests that this number may be less than reliable:

Studies estimate that between 20 and 60 percent of all breast cancer cases could be prevented if major risk factors for this disease were removed from the population. The range of this estimate is wide and reflects the difficulty of this theoretical question. The very notion of eliminating risk factors for breast cancer is difficult to imagine and these values have been incorrectly interpreted to indicate the percentage of cases which are not explained by major risk factors. In addition, a number of the major risk factors, such as timing of childbirth, are very personal and depend on a woman’s age and social circumstances and are thus far less than easy to change.

This suggests that the 75% number may not have any basis in fact.  Cancer risk is very difficult to quantify.  The notion that it can be boiled down to a simple statement regarding women who develop cancer with “no risk” is far from accurate.

She continues to share her own story, and many in the press have been sharing their own anecdotes as to why this report is wrong. And I certainly don’t want to detract from her experience dealing with breast cancer.  I admire her for her battle, and for being so public in her experiences. Unfortunately, anecdotes are just that. They’re stories about one or two people who deviate significantly from the norm. They’re emotional, and they tug at people’s heartstrings. They’re also not science. We’re taught never to use the words “always” or “never” when discussing medicine and science. There are ALWAYS exceptions (yes, I just used both words in two consecutive sentences). And while we hear about the one woman who had a screening mammogram at age 42 and had a tumor discovered that may have killed her, we don’t hear about the woman who didn’t have a mammogram and had a growth that would have turned out positive on a mammogram, that later completely regressed on its own that she never knew about. Our understanding of cancer has changed dramatically over time, and now we do know that sometimes benign lesions actually do disappear on their own. We also don’t hear about the women who’ve had countless unnecessary invasive tests done which all turned out to be benign, because they’re happy to be alive and healthy, and they move on with their lives and don’t talk about it. It also would make for very boring news.  We also don’t hear about how many women had unnecessary tests and then suffered numerous complications as a result of it.

Rep. Wasserman Schultz’s concluding statement is, “so these recommendations are really patronizing because they’re presuming that women can’t handle more information and make a rational decision with their healthcare provider.”  Unfortunately, this is also untrue.  In actuality, the USPSTF report ultimately concludes that the decision should be left to a case-by-case basis, with patients discussing options with their doctors.  That women are capable of making this difficult decision on their own, weighing the merits of screening with the risks, is the central focus of this very report.  To me, it is the Representative who is making the patronizing statements.  It also concludes that these guidelines are specifically only for women who are in the asymptomatic, non-risk group. They do not apply to women with a history of cancer in their families, women who have tested positive for various genetic cancer markers, nor to women who’ve felt any changes in their breast tissue.

One of the technicalities that’s being lost in the debate is the difference between screening and diagnostic tests. And for good reason: it’s a complicated subject! We’ve come up against the issue numerous times in medical school, and medical students can even have a difficult time at first differentiating when a procedure is used for screening, and when it is being used for diagnosis. The same procedure can be considered either, depending on the situation. If a women is completely asymptomatic and has no other suggestive factors, a mammogram is considered a screening test. She doesn’t have any indications of having breast cancer, so the test is used just to screen for any possible indications. However if a woman has noted changes in her breast tissue or has other indications that something might be wrong, that same mammogram is diagnostic. The USPSTF’s report is only suggesting a change in screening mammography, not diagnostic.

It’s worth nothing that back in 1994, the American Journal of Public Health called for a similar change in guidelines.

But in making decisions on mammography screening for millions of women, we need to continue to rely on evidence from research, and the uncertainty of the available evidence for women aged 40 through 49 calls for a change in guidelines that excludes these women from programs for mass, routine screening with mammography.

The recommendations proposed by the USPSTF are not new, and the same recommendations continue to be made by various organizations even as time goes on.  It seems worthy to me that we give them serious consideration, rather than just dismissing them.

Additionally, most of the EU uses guidelines in line with the USPSTF’s recent recommendations. People argue, “who is the USPSTF to say that 2,000 screenings to save one life is not recommended?” Well, who were they to say the guideline was recommended last time? Who are they to say it’s not worth it to do 10,000 procedures to save one life in the 30-39 group? Unfortunately, it’s a value judgment. Science often has to arbitrarily draw a line in the sand somewhere, and 1:2000 may be where the line should be drawn now. I don’t know.

This is a complicated subject, and people have strong opinions on either side. Neither side is “right” or “wrong” and ultimately the decision of whether or not screening is worth the risks really should be left up to the educated patients in concert with their physician(s).  I urge women to research both sides of the topic at length and to speak with their physicians to ultimately come to an appropriate decision with respect to their own health.  We’ve entered a new age where patients are becoming more educated about their health, and ultimately this is an incredible thing.  The fervor surrounding this topic is making more people aware that there are risks inherent in many screening procedures, and I hope that this will be an impetus to educate people as to both sides of this complex decision.

A surgical oncologist that specializes in breast cancer and who writes for one of my favorite blogs recently discussed the issue at length. I would highly recommend reading it. http://www.sciencebasedmedicine.org/?p=1926

http://bitdrop.st0w.com

When the knee buckled, I was taking a step with the left leg and thus had all my weight going through the right. So there was no chance to brace or catch myself with the left. If it weren’t for Richie, I would have landed hard on my knees and probably sat backward on my legs – something that we already know isn’t good for me.

But that’s the whole reason I don’t walk alone just yet, and exactly what Richie is there for.

All of this is compounded by the fact that I still don’t feel pain normally below my injury level, so if something does go wrong, it’s not as simple as noting whether or not it’s a sharp pain or a dull pain. All I’ve felt in the right knee is a sort of tingling and tightness. Sometimes it feels like the same kind of tightness that accompanies a sunburn. I felt that again after the knee buckled, and when attempting to walk during a subsequent session, the knee was much weaker than it had been, and I continued to have that strange tingling/tightness.

I couldn’t put any weight through it, and had to use my arms a lot while walking – something was definitely up. The area just below my patella felt warm to the touch, and more gelatenous than the left knee. It wasn’t a large area, but there was a noticable difference. And since I still had numbers from when we had measured my knee last summer when it was acting up after I slipped getting out of bed and fell on it, we had a basis for comparison. Unfortunately, the amount of muscle mass has changed drastically since then (well, that part is fortunate) – so the comparison wasn’t useful. It was clear, though, that the knee was swollen.

I decided to take a break from walking for a few days to see how it progressed, and when it was still swollen after a couple days, I made an appointment to see Dr. Ragnarsson. His concern was a fracture in the knee, as apparantly they are common for anybody who sits a lot, with or without a wheelchair. So I went for an x-ray.

The next morning he called me back: I have a small avulsion fracture of the right knee. The bone is not entirely avulsed, as can happen with type of fracture, but there is a very small crack in the bone.

Now the upside – it’s not a new injury. The radiologist who read the image noted that it was an old fracture, and the images and report were viewed from last June when it was also x-rayed. Sure enough, it was present then too – and also noted then as an old injury. So it seems like when I hurt my right leg back when I was in the hospital that I may have also caused the avulsion at the same time.

Dr. Ragnarsson said there were no other issues with the x-ray, and he cleared me to return to walking and weight-bearing activity after my nearly two-week hiatus. The first session back was tough – my legs were stiff and not used to being upright. It’s amazing how as short a time as two weeks can have such an impact.

And it wasn’t just a physical impact. During those two weeks, I became increasingly agitated and angry. I didn’t realize at the time exactly why, I just knew that I was feeling really down. The weight of life in a wheelchair felt so heavy on everything I did, and I started to find frustration in every part of life. But I couldn’t explain why all of a sudden.

Then the first day I returned to walking, it all went away the instant I stood up. The weight was gone and a smile once again returned to my face. I’m very much an optimistic person, always trying to see and reach for the barely visible goal off in the distance. But at the same time, I try to remain pragmatic. Each time I walk a bit further than I had in the past, it’s a very strong emotional high. One year ago at this point in time, I couldn’t even move a toe. Now I’m walking with a walker and no assistance from anyone. So even adding just ten feet to my own record makes me feel amazing. In a sense, I’m very much bouncing from each high to the next.

Now, I realize that every day can’t be a record breaker. And I realize there will be down days along with the up. So I don’t sweat it if I have a couple bad sessions where I’m not able to walk as far as I had in the past. Even if it’s significantly less, it doesn’t matter. My focus is always on the continued upward trend. I’ve been interested a great deal in finance and the markets over the past few years, and unless you’re a day trader, investing will drive you crazy if you look at each up- or downtick. It’s the same thing with rehabilitation.

But not walking for two weeks, that was just incredibly upsetting. At least now that I’m aware of the impact, should I have to take a break from it again in the future, I’ll be more prepared to anticipate and deal with it.

Since then, I’ve managed a top distance of somewhere between two hundred fifty and three hundred feet on a walker.  No assistance at all.  My sit-to-stand is still pretty rough, and the stand-to-sit is even rougher.  But we’re working on them and my glute strength is steadily increasing.  Nobody knows if or where my progress my plateau, but I intend to continue pushing forward as far as possible, even with school starting in just a few months.  Egad.

http://www.nytimes.com/2009/04/02/opinion/02thu2.html?_r=1&partner=rss&emc=rss&pagewanted=all

It discusses the extremely poor adoption of electronic medical record (EMR) systems throughout hospitals and physican offices, and touches on a major factor that, until addressed, will prevent EMRs from obtaining the widespread adoption that President Obama would like to see.  And by the way, just throwing money at hospitals and physicians and telling them to implement EMRs is not going to do anything to fix the problem.  It’s a lot more complicated than that, although yes, money is definitely a part of it.

The subject is of particular interest to me, as I am leaving the information security and technology realm for medicine.  I’ve designed several large systems before, and have seen the obstacles that you have to deal with. This article does hit the nail on the head, albeit several years late.  Of particular importance is the following:

The ultimate goal is an “interoperable” system that would allow easy exchange of clinical data between hospitals and doctors. The modernization effort will have limited value if a mélange of different computer systems can’t talk to one another.

While applying to medical school two years ago, I wrote one of my secondary application essays  on the very subject of interoperability and what I view as the only way to solve the problem.  That essay is attached here for your perusal.

EMR Secondary Application Essay Response

I’ve been focusing a lot on vulnerability research, exploring new types of vulnerabilities and methods of exploitation, which is what drew me into the information security field to begin with.  Unfortunately, I wish I’d had more time to devote to pure research in the past.  Not that I regret any of the decisions I made or the client work that I’ve done.  Far from it.  I’ve had the chance to create and be involved in some pretty cool things, which was my goal before medical school.  It would have been nice to get into the more detailed nitty gritty of software exploitation that I’m doing now.  But hey, at least I’m doing it now.  I think I’ll be starting a separate blog sometime soon to chronicle the more technical things.  And I certainly plan to stay up-to-date with the field as a hobby, as it’s been something I’ve been crazy about since I was much younger.

Just this past weekend I went to DC for a security conference.  I mention it not to focus on the security side of things, but because it was the first trip I’ve taken since the accident on my own.  Over the past year I’ve taken several car trips with other people and stayed at a number of hotels, but never the train and never by myself.  Strange, a twenty-nine year-old man who’s traveled the world for clients in the past thinking about taking a trip alone for the first time.  Amtrak carried me from Penn Station to DC and back, and Marriott helped on the bedding side.  Fortunately enough, the conference was at the same hotel I stayed at, which made things a lot easier.  The trip was remarkably unremarkable.  Managed to get onto the train without issue, and transferred into a seat.  The gap getting out of the train was a bit too big for me to comfortable wheelie off of (especially with a heavy bag on the back of my chair throwing my balance off, a six-inch drop, and a gap that seemed about four-inches wide), so the conductor got a bridge plate.  It’s basically a small, foldable, three-foot long sheet of metal that acts as a ramp.

The Marriott was great.  Their accessible rooms truly are accessible, unlike the Westin I stayed in a few months ago for a wedding.  While the Marriott had a roll-in shower, angled floor with a drain and a fold-down bench to sit on, the Westin had this ridiculous “bench” at the end of the tub.  It was really just a normal bathtub with a four-foot by four-foot tile platform at the end of it.  There was no tub bench to sit on, so the only place for someone disabled to sit on is the flat platform at the head of the tub.  Now, I’m no physicist.  But when you have somebody sitting on something that’s vertically higher than the tub, do you think all the water is just going to preferentially drain into the bathtub when there is no slope?  Let me tell you that, no, it does not.  So the bathroom floor at the Westin was a lake for the weekend.  Lest you think I’m just bathroomly inept, the hand-held showerhead in the Westin, which had its own water control, was mounted right at the end of the tub by the platform.  Whoever designed that “accessible” bathroom clearly doesn’t understand what accessibility really means.  The Marriott even had a cut-out under the sink, to allow clearance for someone’s legs while in a wheelchair.  And so did one of the sinks in each of their public bathrooms.  Everybody responsible for designing spaces to be used for disabled people should have to actually sit in a wheelchair and try their spaces so they can learn from their mistakes.  Of course there’s no way for them to try them beforehand (although CAD software really should be able to model this kind of thing), at least they can explore different spaces and see what it’s really like.

Coming up this weekend will be the first airplane trip.  Kristina and I are heading to Cleveland to meet with faculty and administration at Case to do some planning for starting medical school in July.  While there I’m hoping to also scout out a few possible places to live and make some contacts that will be helpful when it comes time to sign a lease or mortgage in a few months.  And I’ll also get to see how another hotel chain handles accessible rooms – this one has already told me they have a roll-in shower, so hopefully we won’t create a miniature Lake Erie on their floor.  With any luck, I won’t have to put the snow chains on the chair tires.

Over Christmas I went to visit some family I’ve got in Maine.  Now, there I needed snow tires.  It’s an annual trip for me, and I love spending time with family that I’ve always been close to.  My uncle built a makeshift ramp from the first floor to the second floor of their house, using wood to create two tracks on the stairs that fit the wheels of my chair properly. Since the tracks were only approximately the width of the chair, everybody else could still walk up and down the stairs relatively normally (albeit with a small width).  He then rigged up several heavy-duty sailing pulleys to the beams of the house at the top of the stairs, and we used the pulleys to basically pull me up and down the stairs.  It was quite a creation, but it worked every time and was safe at the same time.  I spent a full week up there (up in Maine, not up at the top of the stairs), and it was really great to spend time with family, get away from the city and unwind a bit.  I also took a walker with me and made an effort to stand just about every day while there.

For some reason after getting back from that trip, though, I was really feeling down.  For the first week or two, I was feeling a bit detached and more moody than usual.  I think part of it was having to return to reality.  Although I certainly can’t ever forget the disability I have to live every minute of every day with, it’s easier to ignore it when you’re in a different surrounding doing different things.  My legs were also understandably stiff when I returned.

But the bigger part of it, I suspect, was that I was quickly approaching one year since the date of my injury.  It’s hard to believe that as of this past January 27th, 2009, it’s been a whole year since that awful night.  Looking back on it, I’ve been through so much and it makes the year seem so long.  But it has absolutely flown by while it’s been happening. Somewhat in a daze, of course.  When I look back at the original blog posts from when I was still hospitalized, it blows my mind to remember just how functionally impaired I was.  The weakened grip strength (which, by the way, about a month or two ago I grabbed the grip strength tester and was pulling 120 psi with both hands), the inability to roll over in bed, heck, I couldn’t even sit up on my own back then.  I’ve come so far in the past twelve months that it’s hard to even remember how impaired I used to be.  And I remember in the past, I haven’t been able to remember life before the injury. Funny, those memories seem to be slowly coming back.  I’m glad to now how the old blog posts to read over and help me to remember where I’ve come from.  It’s humbling, to say the least, to compare to where I’m at now.

Now on to the good stuff.  About four months ago, I took my first steps on the parallel bars in physical therapy.  Then in early November, I also started to do some walking on a walker with full-leg braces.  Well three weeks ago at Cynthia’s direction, just before the one year anniversary of my injury, I’m happy to say I shed the leg braces and finally took steps on a walker with no assistance.  Because of some of the past difficulty I’ve had with leg spasticity, we’ve been cautious about getting onto a walker without braces too soon.  The concern, of course, is that my legs will spasm and give out from under me, and I’ll wind up on the ground.  So we have proceeded very cautiously, and the first time standing up without braces I had one therapist on either side of me, and another person behind me to hold on to my belt just in case something went wrong.

But up and off I went.  And these weren’t the sloppy, barely steps that I had first taken on the parallel bars a few months ago.  Both legs were able to support my weight independently, and although the right leg is still weaker than the left, I was able to move them both independently.  So now no walking in parallel bars, no walking with braces, just walking with a walker under my own strength.  Since then, I walk in every PT session (4-5 days a week), and try to stand at least one of the two days I’m not in some form of PT.  I can walk about fifty feet before needing to rest when things are going well, and I generally walk three to four times each session.  And I continue to stand in the standing frame and in the parallel bars each of those days to help build strength.  I’m generally at Sinai for three and a half hours for PT, and I put in as much extra time as I can.

There are still some accessory muscles that are extremely weak, barely measuring a one out of five on the ASIA impairment scale.  At this point there are only a couple that are still that weak, but just one or two months ago they were still a big fat zero.  I can stand for several minutes now without getting tired, only needing to occasionally lightly touch a walker for balance.  Once those accessory muscles get a bit stronger, I hopefully won’t need to use the walker for balance when standing.  Cynthia (PT) has indicated that her goal for me is to be able to use a walker for mobility around my apartment by the time I leave for Case in three to four months.  I would be ecstatic to be at that point by then, but if there’s anything I’ve learned through this ordeal it’s to not set arbitrary deadlines.  Granted her timeline is probably much more realistic than mine, but I’ll just take each day as it comes.

So while I’ve still got a long way to go, I’ve come incredibly far in the past year.  And I’ve got no intention of stopping any time soon.

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The venue was gorgeous and the event was well run and really just a ton of fun.  Plus, I can’t even express how great it felt to be more than five blocks from the hospital and out in a normal social setting for once.  I can’t wait to be out of this hospital.