Medical research - not from industry

I think the business side of the research industry is chicken. They are letting academia take the risks in coming up with medical breakthroughs...

So the real gap is between the promising research and the actual technologies, drugs or medical devices. We can't look to industry to find new breakthroughs but to academia and the institutes which bridge this gap. Yes I realize they are a long way from a proven treatment but they show the promise for the future.

Maybe industry is just chicken to spend the money in research that might never lead to a money making venture. I'll put my hopes into academia and gap bridging research.

Well Why Didn't We Know?

Someone I know has cancer (wow, now that should be a surprise - us cancer people seem to hang out together a lot). Anyway, he has been dealing with multiple myeloma and it has come back and he has been hospitalized for a few weeks. Mutual friends said 'well why didn't we know this?'. My response was 'maybe he was too focused on being sick and didn't want to keep telling everyone about all his latest ups and downs'. Their reply 'no, that can't be, we should have been told'.

Um, me thinks not. First of all, everyone handles illness differently. And if you are the one with the illness, it is your right to choose not to tell people or maybe you were too sick to tell people and your immediate caregivers were a tad busy caregiving to start emailing and calling. 'Hi, we are between visits in ICU and thought we would start calling everyone to tell you how she's doing. But we really don't know the prognosis and aren't sure what to say but things don't look so good right now.' Yeah, right.

I think the situation is more like 'she's sick again, we told a few people who weren't comfortable sharing someone else's story without knowing more details. And its their story to tell.'

For those people in the world who think they need to be told every one's medical news all the time, cool your jets. Sick people don't really feel like talking on the phone or emailing - and if they are in ICU or something, they just can't. And sometimes they aren't ready to tell their story over and over again.

I will be perfectly honest here I don't tell everything to everyone. My husband knows 99% of my medical crap - I don't tell him the things I forget (see chemo brain kicks in). But no one else does except my doctors and they don't know it all unless they read each other's notes about my visits - and I am not so sure of that part.

I have my blog (yes this blog you are reading) to control how much information I give out. It is my way of being in control of my lovely medical crap. Some things I don't want to talk about, some things I don't need to talk about (do you really care that my cholesterol levels are awesome - in my doctor's words?), some things I am not ready to talk about, and finally some things I am avoiding talking about (like the injections under my knee cap that the very idea of creeps me out and start this week).

So if you didn't know the fine details of someone's medical issues, you can wait until they are ready to tell.

Lymphedema land

I am speaking to my left arm here: Time to get skinny! I am not prepared for puffiness. Stop it now please!

Basically I am having a lifetime lymphedema discussion. I was fine until I fell on it a few years back. I went and got a sleeve (which is like a girdle - after you wear it for a few days you won't notice it (NOT) and it gave me a tan line on my wrist) which I wore for a while and stopped because my arm was behaving. Then I started going to the gym and using the machines. I was told to wear my sleeve and gauntlet while working out - I remember it about 50% of the time and my arm seems to be behaving.

But not in the past few days. Back to sleeve wearing - which I hate and as the weather grows warmer it becomes even less fun. %&*$^%&*^q+ Grrr! But I will suck it up for a while until I get a tan line on my wrist.

Life in a paranoid society

I go to the gym - the new high tech, cool gym, where I don't stand around like an idiot looking at the machines trying to figure out how to use them - and everyone there carries around the sanitary wipes to protect from germs. So I don't look like an idiot, I use them too but I really don't think they do much more than move the germs around... My theory is I wash my hands before I work out and after. A little soap and water goes further than the little wipe things.

If you ride a subway, bus, or any other public transportation (taxi anyone?), think about the germs you touch, breath, etc. Or grocery carriages? Or entrance and exit doors to buildings? Or those wheel chairs at hospitals and airports? Or... and the list goes on.

Then its headlines that a hospital notifies people of TB exposure - that's almost as important as a data breach at a bank. Or you hear about cases of measles, HIV, head lice, or other contagious diseases. And what does it do? Make us all paranoid. We are going to get a germ and DIE! We are doomed! No need to wait for the real Rapture, a germ will get us in the meantime. (Did you scratch your head after I said 'head lice'?)

Personally I don't think a little dirt or germs really hurt us. They allow us to build up some natural immunities which protect us from the really nasty stuff. I mean there is no need to hang out with someone with the flu but there is also no need to go overboard with disinfectants. And they are only building disinfectant resistant germs anyway.

But yes it is all in your head, they are not out to get us. If you don't believe me, I'll cough some cancer cooties in your direction.

Good behavior for your doctor's visit

I guess there are idiots out there because they wouldn't tell us not to do these things unless someone already had. I am kind of sick and tired of all these lists of things on the Internet. I think it is believed internet users have no attention span because everything is a list of things, or a series of photos of something related, or in other ways formatted for those with brains of a gnat who can't stop and read a paragraph. Anyway, here is another list I like: Things not to do at your doctor's office:

1. Talk on your cell phone - apparently this should be part of the hang up your phone campaign we need these days.
2. Lie to your doctor - of course you don't drink, don't smoke, wear your seat belt, get 8 hours of sleep, don't stress, and eat your veggies and fiber.
3. Can't describe your pain or other issues - 'doctor I get a pain in my eye when I drink my tea', 'well take the spoon out of your tea cup'
4. Forget to tell them why you were there in the first place - they don't want to hear about your day, they want to know what hurts or why are you worried.
5. Never tell them what you expect as a result of the visit - well, the doctor says 'you have cancer', my reply is 'well find a cure'. Am I unreasonable? Maybe.
6. Forget your medication list - if you take more than one pill a week, write it down unless you have a photographic memory.
7. Leave with concerns - I have learned to speak up and say 'um, well what about this too?'. At my last physical, my doctor said 'we will focus on this today and come back in a month for the test results and for the rest of the exam.' I guess my list was on the long side.
8. Medical records and images - I have all my doctors in the same place and they are electronically connected so I don't have to worry. But sometimes I have to tell them to dig through the last few months of tests and see how I was six months ago to compare. Its not just making sure your test results are there but that they look at old ones and new ones.
9. Chicken out of disagreeing with your doctor - a doctor is a service provider and if you don't like them, fire them the same way you would fire the plumber who ruined your plumbing.
10. Follow the treatment plan - My thoughts are a doctor tells you their recommendations for what you should do to treat your ailment. It is your choice to follow it but if you don't you should communicate this to your doctor - see above about lying to your doctor.

So that is my lessons on good behavior today - right up there with wear your good underwear in case anyone sees it at the doctor's office and bring a good book to prevent boredom while waiting around. (And wear really light weight clothing so you weigh as little as possible...)

I am not capable of technology

I just created a long blog post about whether I was capable of technology and the answer is I am not. I accidentally deleted it before it posted and have to start over. It was all about how advances in technology can be good - this is coming from someone who survived the release of Windows 3.0 and first used Lotus 123 Version 2 for Dos (the computer operating system back when the world was flat and in black and white). But apparently I am not good enough to use my own phone for anything but making phone calls.

Now I have moved to a desktop computer and am being assisted by the cat-on-the-lap syndrome so it is a long slow process - but the cat is happy.

Speaking of long, today will be long. My back decided I had too much fun recently and woke me up early to tell me about this. Unfortunately I do not have the luxury of a day of nothing with my feet up so I will suck it up (and pretend I am not cranky) and take my pills. There is no back technology to help me here

Traveling

Everyone says 'go on vacation, you'll rest and relax'? But what if you need a week's recovery after the travel? You need a two week vacation - the first week recovering from traveling and the second week enjoying vacation and then by the time you get home you need a third week to recover from the trip home?

I now travel like a little old lady. I have a bag with wheels that has barely anything in it that my husband lugs around for me as a carry on. Everything else gets put in normal luggage and checked - and I cross my fingers it gets there when I do.

The contents of my carry on luggage include a sweater (because I get cold), a book to read (so I don't get bored and cranky), and all my medications... Which is two daily pill boxes, two extra prescription bottles for 'in case' and some lidoderm patches for 'really bad in case'.

I like traveling. I have traveled my fair share over the years. I've even done the obligatory cross country road trip staying in cheezy hotels (and trying to watch a lunar eclipse as we drove through downtown Cleveland). I have gone too many places on business trips which don't really count as travel because they could be anywhere in the world and you are just stuck going between an office, a hotel, and another restaurant between getting lost in a rental car. I can even drive on the other side of the road and navigate rotaries/roundabouts in both directions.

Now my travel plans are along the lines of:

- It has to be some place we can get to without exhausting me.
- It has to be some place that if we get there and I feel like crap, we didn't go to the other side of the world to watch CNN International Edition in a hotel room and feel like we wasted a lot of time and money.
- It has to be some place that is interesting but does not require too much exertion - I have cancelled any plans of hiking the Appalachian trail or getting to Base Camp IV on Mount Everest.

Otherwise, I like to go places. I am looking forward to the thermal springs in Iceland later this year. I want to try new foods - I went to Japan once and everyone wanted to go out for Chinese or Italian. They were disappointed I wanted to only eat Japanese food. But I will draw the line at the Icelandic dish of rotting shark meet or something. I mean I do have standards!

But traveling with a bad back/knee/hip etc has shown me that there are benefits to golf carts in airports (besides running down uncontrolled children). I have a friend who is truly handicapped who recently flew to the West Coast. She said because she is handicapped, she got a really good seat on the plane, free food, and priority boarding as well as rides in golf carts. There is something to be said about that.

I need a vacation where I can sit on the beach and watch the waves roll in - even if I don't feel very good, I'll still be enjoying myself.

Second opinions

I am not a big fan of second opinions. I always feel like I am sneaking around my doctor's back to ask someone else if they were right. I know some people who get them routinely on just about everything. Me I have enough doctor appointments already not to want to go to any more. Sometimes my doctors send me off to see other doctors.

Apparently there are times to get a second opinion - like when you get a nasty medical diagnosis. For me it was easy, where I am treated once you get a cancer diagnosis, you get to have a day of 'being poked and prodded' by multiple doctors. In my case it was a surgeon, a medical oncologist, and radiation oncologist and finally a social worker to tell me I wasn't losing it.

Anyway, if the news from one doctor isn't good there is always the option of finding a doctor you prefer to treat you.

The Death Panels

I hate to bring these up again - but I am sure everyone remembers them and how Obamacare was going to create death panels to kill us all off. They kind of reminded me of something out of communist Russia or Hitler's Germany on getting rid of the undesirables.

Butwhat if they were good death panels and included:

- An oncologist to help weigh pros and cons of chemotherapy and other treatment
- Palliative care consultants to help understand the options regarding life support and make recommendations about pain control.
- A psychologist to advise on how to share the news with family members.
- A spiritual adviser, chaplain, minister or priest to offer comfort and prayer if wanted.
- A case manager to help organize transfer to the desired hospice.

I think I would want that kind of death panel. But mine would also include a caterer to plan my memorial service which would need to be catered by both a really good Jewish deli, a good Chinese restaurant for the appetizers, a sushi bar, and a high end seafood restaurant - I want a bash - and I want to be able to sample all the foods first.

I might also want a lawyer to flit on through and help me finalize my will and take care of all the legal crap.

What are the requirements for your death? Pain free? In your sleep? Not a lot of suffering? I think this kind of death panel would be very helpful.

I am not in any rush to go and right now am focused on living life to the fullest - and have a lot of fun along the way.

Its 'Insert Event Here' Season and the money goes where?

Every spring seems to explode with fundraising events, everywhere. Relay for Life from the American Cancer Society, American Diabetes Association, Komen Walk, Avon Walk, Pan Mass Challenge, local hospital 5K walk, etc. There are walks, rides, spinathons for everything under the sun these days. These are great events where funds are raised for awareness, a charity, or any number of other causes. They get people out to help others.

I have participated in a variety of these events in the past, volunteered with others, and helped coordinate others. They take a lot of effort to put together. They do a lot of good. But the question is where does the money go?

Chances are if its a national organization the money is going to help for a national awareness, research program, or something else outside of your community. Even at some local events the money ends up being spent elsewhere.

I think we always want to help our friends in their efforts to raise money. But we always should ask ourselves, where does the money go? Some large non profits can be thought of as fundraising machines. They have fundraising down pat. Their annual events raise a lot of money and do a lot of good.

But there are lots of smaller organizations right in your home town that shouldn't be overlooked as well. They can be a local no-kill shelter, support group program, children's bereavement center, etc. These types of local groups often are just as much in need of funds as the national organizations but don't have the budgets to be as organized as the national ones. As a result they are often overlooked by donors who get bombarded by the national organizations and skip the local ones.

Being a locavore means eating locally grown foods. How about trying to be a localdonor and giving locally instead of nationally to help the smaller organizations?

Dont believe everything you read

Today is the day which has been predicted by some (little religious cult/Christian radio station who wanted to make headlines and blamed it on the bible) that the world would come to an end. Or maybe it won't. I'm voting for it not happening and I've got the Huffington Post on my side to prove it. I mean if the world was going to end:

- Why do we have milk that won't expire until tomorrow?
- Sarah Palin isn't president
- and the Mayans never said so

Go read the rest for some humor to start your day. A big case for not believing what you read.

Other things not to believe on the internet:

- Medical advice for any site which is selling a product to cure you.
- Medical details from non-medical professionals. Someone's blog (even mine), Facebook page, tweet, etc tell about their version of the medical adventure but that is only what happened to them. You are different. It may not work for you.

Anyway, I am cynical and tired this morning. I have a LOT to do this weekend - work related. My toe hurts. I went to a church dinner last night and ate some yummy home made food, aside from feeling fat as a result, my back hurts from sitting in a folding church. My antibiotics are playing games with my stomach and digestive system - I hate that. Oh, I am overscheduled. Is that news?

Today I have a non profit event this morning and am bringing almost everything for it. Afterwards I need to go to the office and drop off everything and get the materials ready for the next event next week end that I can't attend. Then I need to put in the final edits for a newsletter and produce it, put it up on the website and into electronic format to be distributed. I also need to get an updated copy of our database uploaded. Finally I have some paperwork to finish up. After all that I will go to the gym, the farm stand for vegetables and some annuals, and it will probably be dinner time.

That part is true. That is my day and its supposed to be a weekend where I can rest.

The more I learn, the more I find how little medical science knows

Yesterday I saw the nurse practitioner that works with my breast surgeon for a follow up to my mammogram - which was last week but due to their scheduling mess up (they didn't see the note to schedule my appointment with her until I called and ask - second year in a row but I'm not cranky).

She asked how my health was and I told her 'well I'm seen by the pain clinic for back problems and bursitis in my hip, and I have PT for my knee and shots coming up, an infected toe, and tachycardia, and my thyroid levels might be out of whack' and she gave me one of those 'deer in the headlights' looks.
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I then added that in the past six months I have been going to first an exercise class and then a gym where I get help with a workout plan and in some ways my back has actually been feeling better. She said she used to work in the Pain Management department and they have so few resources to help with pain issues and there are so many areas where there is not much which can be done but exercise does help with controlling the pain. I pondered that and realized that yes that's probably the case because I have never been offered a lot of options - pain meds, injections, anti inflammatories, PT and ice packs.

This morning I found this article that says fewer cancer screening tests may be needed. The key word here is 'may'.New research is saying that some tests may prove to eliminate the need for other tests. But more studies are needed to figure out if this is really the case (another medical study to show the need for more medical studies).

How many times have I been told 'well we don't really know why some people get fill-in-the-blank ailment', they just do. My blood pressure issue was one of those - I come from a family with LOW blood pressure, I exercise and eat right (admitting to the occasional snuck in treat) and my blood pressure hasn't been cooperating.

Of course there is 'we don't really know why you got either cancer' - this is clear gap in medical knowledge. But that's another whiney blog post another day.

Yesterday was a bad day so apparently I am crabby

I had a bad day yesterday. It was long, eventful, stressful, and tiring. My husband keeps telling the cat to avoid me because I am being crabby - even though I fed the cat and made lunch for my husband.

Yesterday morning I woke up starving, wanting breakfast, and couldn't eat, even have coffee because I had a fasting blood test before my 830 doctor appointment. I got up, fed the cat and made lunch for my husband, and was starving. I finally took a shower before getting dressed. My big toe on my left foot has been bugging me for a few days so I took a look at it after getting out of the shower. It was infected. I mean there was (yucky) pus next to my toe nail. I don't consider that something one wants to see. Crap.

I went to the hospital for my blood test and grabbed coffee and a banana (as a crabbiness reduction attempt) and called my doctor's office to be seen the same day. I got a 915 am appointment which fit nicely after my previously scheduled 830 appointment. At my 830 appointment my meds therapist wanted to know why I didn't want to increase the dose of one of my meds. I said I prefer to take fewer instead of more medications and if I am doing fine at one dose then why change it? She thought I should increase it, I disagreed. Then I realized there were refills available at the original low dose that she had ordered previously. Call me cranky but I don't want more drugs.

Then I went off to see the doctor about my toe. Its infected - now that's news (I saw it). But she said I had gotten it before it went wild. So I have to soak it twice a day in warm water, keep it covered with bacitracin or something and a bandaid and take an antibiotic for the next 7 days. If its not better in a week, call back for a follow up with a podiatrist and he can cut away at my toe. Oh joy! That sounds like some much (not) fun!

On my way home from the hospital, I stopped at medical records to (stupidly) pick up my test results from all the tests I have had recently. They did have the results of my fasting blood test from that morning which was good. This is what I found out. My mammogram was fine - but I already knew that. My bone density scan shows that I am once again back in osteopenia land after successfully leaving it two years ago. I have lots of good cholesterol and only a little of bad cholesterol. I have my EKG but haven't deciphered it yet but my doctor said it was fine but fast. I want to figure out the notes from when they compared it to my last one.

Once I got home I realized that I had not received my full blood count test results. But since I have another appointment today I can stop by and get it - and then it showed up in the mail. That was full of all sorts of nice news such as my blood counts are finally returning to the pre-chemo levels. My thyroid levels are back into low normal but we are still adjusting them.

Then I worked from home, met a friend for coffee, stood in a giant line picking up three prescriptions and rushed to PT. After that I came home did more work and had a conference call for volunteer work for an hour when all I wanted to do was go to bed early.

So the result of yesterday is I have another prescription to take, 2 new issues - infected toe and osteopenia, and have a bruise from this week's blood test growing on top of the bruise from last week's blood test.

Maybe because it has now rained for 6 days in a row is why I am cranky. But I also would prefer to get healthy.

Prescription privacy

Who's business is it on which medications you take? Apparently if you ask the pharmaceutical companies it is their business.

The article I cited is written by a doctor who would like to see doctors sign up with the AMA to prevent their prescription data being sold without their express permission. I am writing from the side of marketing and as a patient.

In the real (non medical) world I do marketing for a living. In a perfect marketing world, for every mailing that went out, there would be a sale. But that isn't how it works - we all open our mail over the shredder and hit delete on our email without reading it. So pharmaceutical companies use the prescription data - from pharmacies with the patient names but not the doctor names removed - to refine their marketing. It is in their interest to promote newer medications which are still patent protected and will reap the larger profits.

As a marketer, I can see the value of knowing doctor prescribing patterns. A doctor who prescribes new medications and tests regularly is a good target for marketing of new items. But a doctor who isn't as receptive to change, is not. Also, the data will tell pharma companies what kind of patients the doctor really treats - also very valuable. This is the dream of marketers - to find out what people really prescribe so they can target their efforts.

As a patient, I don't really care what the pharmaceutical companies thinks or what marketers want. I want the doctor to prescribe what I really need not what the marketers from the pharma companies want them to prescribe.

I am lacking inspiration this morning

I can't come up with anything to write about today. Its the third damp and cold rainy day in a row and I believe we have four more to come. Maybe I need some warm weather and sunshine? I don't know. I'm tired, I didn't sleep well (again). I am trying to motivate to go to the gym so maybe I'll get nice and warm and partially wake up. But that would require getting my butt out of bed, where I am comfy.

Today I will not spend a lot of time dealing with my health other than pretending I am coordinated enough to do the exercises from my physical therapist. I got some new ones yesterday and asked her which ones I should be doing of the dozens she has previously given me.

The new exercises I have are these three:
- Stand on my left leg, holding on to something with my left hand (so I don't fall on my face), and bend over and touch my left toe with my right hand and raise my right leg straight behind me. Do two sets of 12.
- Sit on a table and attach a weighted band with a 7.5 pound weight to my left ankle and pull my foot back as far as I can. Do two sets of 12.
- Single leg bridges. You know what a regular bridge is where you lie on your back with your feet flat, knees bent and raise your hips. Well try it on one leg, with the other leg out straight. Do two sets of 12.

And do this twice a day. I can't wait. I have to figure out how to do the one with the weighted band at home since I am not going to the gym twice a day.

Now I am unmotivated to go to the gym. I could opt for plan B and do some work from home and then go to the gym. I'll figure it out but maybe start with breakfast first.

Technology and health

New technology comes along all the time. I usually am not one to jump on the bandwagon right away. Maybe I'm slow but actually I think its because I am cheap. Do I really want to spend money on things I may never use? I mean I have enough UFOs (Unfinished Objects) in my house already - half-knit and half-crocheted items, plans to rearrange the living room, spring cleaning, paint the kitchen, etc. - do I really need something new that will suck up more of my time that could be spent catching up on my DVR'd TV shows?

I am contemplating a color Nook from B&N. It looks pretty cool but I will have to think for a few months if I would ever use it. And what would I do with all the books I already own? And what about the joys of going to a bookstore and browsing - a favorite rainy day activity? But I will ponder this for a while.

A few years ago, I joined the smart phone groupies and got myself a Samsung smart phone from AT&T. I know its smart because its smarter than me - it does things that I don't understand and I know I don't use all its capabilities. I am sure it can do more for me. I still keep my calendar in Outlook on my less-and-less-frequently used desktop computer - not even on my laptop, never mind my phone. With my medical appointments it would be an epic undertaking to move over everything but I might need to bite the bullet on this one.

Now it turns out my smart phone isn't smart enough. There are all these medical applications that might help keep me healthier. But I don't think my phone can use these because they are for iPhones, Droids, and Blackberrys.

So if I want to use these apps, I need to upgrade my phone... So why should I move my calendar over to my phone if I'm about to upgrade it? Do I really need a smart phone if I am going to get a color Nook where I can surf the web? This is turning into a technological overload which might cause me to have more health issues. Maybe I'll just keep reading the newspaper that is delivered to the front door daily.

Things change, but they don't really

Last night I was lying in bed listening (with a tiny bit of insomnia) to the heavy rain come down and realized that I wasn't concerned that the roof might leak. This is a significant change, there were a few years where I would dread every forecasted rain storm and even make a point not to be home in case the roof did leak.

When we bought the house in early 2005, we knew we needed a new roof. We had some ice dam issues that first year which caused some ceiling damage too. We had the roof replaced in the summer of 2005. On New Year's Day 2006, I was working in my office upstairs and heard a drip. The roof was leaking in my office. We found a new roofer who would come that day and did some repairs. A few trips by the roofer and several hundred dollars later, we no longer had any drips but I had learned to hate rain. It would stress me out. What if the roof leaked again? We couldn't keep spending money on the roof, we had to pay for other things - a furnace, driveway paving, etc. I was stressed for every storm.

Last night I was not stressed by the rain and I started thinking. I knew the roof could leak at any time. This does happen sometimes. Roofs do leak - during hurricanes, or when big debris lands on them, or with ice dams, not just in regular rainstorms. But I wasn't concerned.

Last week I had my annual mammogram and physical and I wasn't stressed about cancer issues. I was stressed about other health issues on my never ending list of new medical issues. Have things changed? Not really. Just because I was not stressed about cancer cooties, doesn't mean the concern they may reappear has disappeared. It never really does.

After my first cancer diagnosis, I learned to despise the words 'but with your medical history we need to be sure...' Every little medical blip put me to the front of the cancer line. Eventually, my stress settled down and I wouldn't be as concerned about every issue. Then another cancer diagnosis, totally unrelated but very stressful, came along and I returned to the front of the cancer line for everything.

With two cancer diagnoses and three years of waiting for a clean mammogram, my stress level is finally settling down. Maybe my breast cancer is not going to come back but 'with my medical history, they always need to be sure'.

So last week, I wasn't as concerned that they might find cancer cooties related to my breast cancer as it has not been as problematic in the past year. In fact I passed last year's mammogram and with a second clean one this year, I was feeling pretty comfortable with it and wasn't freaking out that they might find something else during it.

Its the other cancer issues that cause me stress but that doctor isn't until July. I have another thyroid ultrasound in July to see if they can figure out what is the 'detectable but too small to biopsy' thing is that is hanging out where my thyroid used to be. So I think I have just deferred my stress for a different doctor appointment.

I can still stress about my mysteriously caused heart rate issues but that doesn't look like cancer. It could be caused by my thyroid levels being messed up but it doesn't look like cancer. I'll have my echocardiogram in a few weeks and learn more then. I'll save more stress for then.

So things did change, the roof didn't leak and my mammogram was clean and I wasn't stressed. I have learned that I can always find something new to stress about with my health. And with 'my medical history, they need to be sure'.

I'm cranky

I'm cranky this week. I have a lot going on and am feeling stressed. This is what is making me cranky:

1. Blogger was down for most of two days. I find this one of the most epic cases of mismanagement. Yes it is a free service we use to host our blogs but it is part of Google's money making tools (where they are trying to take over the world) but they just severely shot themselves in the foot. Apparently there were some upgrades and maintenance issues and things went wrong and the Blogger service was done for parts of Thursday and most of Friday with no real updates or explanation. I am ready to move my blog to a provider which actually runs parallel servers to ensure these issues don't happen. Its not the problems with service but the lack of communication through the issues. Just imagine if the Google search engine was down for the same amount of time. Anyway, I couldn't blog yesterday and I always blog (unless I am in a part of the world without internet) and it upset my routine and made me cranky.


2. On Wednesday I posted about my wonderful series of doctor appointments and how much fun I had with them on Tuesday (but you couldn't read it because Blogger was down). They were so much fun and then my doctor called me Wednesday night and I couldn't get hold of her to call back until Thursday morning. When doctors call you at home at night it is always stressful. Apparently my blood tests, EKG, and chest x-ray were normal (or as normal as I can be) but my PCP spoke with my endocrinologist and they want me to slightly adjust my thyroid hormone levels down to see if it impacts my heart rate and then have more blood work in six weeks. But if my thyroid level gets lower, its harder to lose weight or not gain weight and one of the things which stresses your heart is your weight. I also have an Echo cardiogram in a few weeks to see if this tells us any more information. So I am still in 'wait and see' for longer.


3. I am not looking forward to a series of shots under my knee cap. I was stupid and looked up what they do and then someone else told me how painful they were for her husband.


4. I am overscheduled. I have entirely too much to do in the next few weeks. I have personal stuff to do. I have volunteer work. I have doctor appointments. I have a lot of work to do. I have meetings. I have events for work. And it all has to be done in the next ten days.


5. I have knee pain, back pain, SI joint pain and don't feel like sucking it up and coping so I am whining.


6. I am not getting enough sleep. I wake up at night and have a very difficult time getting back to sleep. And last night just as I did get back to sleep the (stupid) cat knocked over my water glass all over the floor. He went back to sleep. I cleaned up the mess.

But otherwise I am fine and there were no cancer cooties to be found at my physical.

Is this even news?

Health care costs for American families are increasing. Is this even news any more? When health care costs go down, that will be news.

But I did pick a few nuggets out of this increase. First of all employers are pushing more of the insurance costs onto employees in an effort to control their costs. I don't see a problem with this. Your employer provides health insurance but where does it say that they have to pay for the vast majority of it? They don't. They have to pay for what they can afford.

Health insurance is a benefit that is part of an employment package. This is true whether you are a CEO for a multinational or bagging groceries. If you are offered a job at $15/hour working in a retail store. It provides two weeks vacation each year and a 401K, and no health insurance. How does that compare to a job working at a retail store for $14/hour which also provides two weeks vacation, a 401K and minimal health insurance at a cost to you of $50/week. Which job would you take? I would take the one with insurance. In looking at job compensation, never just look at the rate you are paid but everything else involved. This can also including commuting costs and distance and hours required to work - 7am-3pm or 7pm-3am - there's a big difference there.

So health insurance is one thing a company offers and the costs may change. The company may also choose to move their office to another town, or change how much they put into your 401K or change their vacation policy. That is their prerogative. If I company can't afford to keep up with the insurance increases set by their insurance provider and maybe has to cut back on benefits offered or increase co-pays and all sorts of other options but the premiums go up. You can't blame the employer, they are trying to stay financially solvent and not have layoffs.

Another point is that although health care reform is in the works and is starting to show its impact, it has only had a very limited impact on curtailing costs. Those changes are still coming.

My point (because I always have a point) is that health care costs money. There is no way around this. It is based on skilled people providing services to you to keep you healthy. This doesn't come cheap. You can't have an MRI using a several hundred thousand dollar machine, that has to be maintained, serviced, upgraded and periodically replaced without expecting to bear some of this cost. Some of the cost comes directly out of your pocket, some comes out of your pocket indirectly through lower salary from your employer, and some comes out of your pocket from government subsidies etc. You are going to pay for it.

So until health care costs go down, there is no news and we still have to pay for it. If your employer needs to increase your share of your health care instead of letting you go, which would you prefer?

That Lovely Place to Wait

I feel like I should run around quoting 'Candide', where the cast runs around wishing for the best of all possible worlds in the middle of the Spanish inquisition where its 'oh what a day for an auto-da-fe'. Basically incredible amounts of optimism in the midst of chaos and bad things.

Yesterday I had a wonderful time at the hospital. I met with my back pain doctor and we discussed my back and how it actually feels better these days due to my new drugs and my actually making it to the gym regularly. He also gave me a greatly appreciated cortisone injection in my left hip which has been full of bursitis recently. My back feels okay - meaning it doesn't give me nearly constant pain, but it is not and will never be cured so don't jump up and down with optimism for me. I don't have to see him for four months instead of the usual three.

Then I went for my mammogram and changed into a lovely gown and sat around and waited but then finally got a clean result on the first try which was very nice. I changed back into my clothes.

Then I went back to check in for my bone density scan and changed into another set of lovely pajamas. The test is quick and boring. I then changed back into my clothes again.

My last scheduled stop was at my primary care for a physical with my new doctor. We talked and decided that the biggest concern is my blood pressure/pulse/heart rate. She measured my pulse at 106 but my BP was 128/86 which isn't bad but still higher than it used to be. We talked about my eating habits, my salt intake, exercise schedule, weight gain/lost, etc. We also talked about the impact of my thyroid level (which won't settle down) on heart rate etc. Weight loss would be good as well - but I already knew that and will try some more.

Finally, this is what I know. I have tachycardia - meaning fast heart rate - which is not a good thing. After changing back into my clothes again, I was sent for an EKG (which meant another lovely gown) and I brought the tapes down to the doctor to read. She said my heart rate was normal but fast. So I guess the good news is it doesn't look like I am about to drop dead. But then I had a chest x-ray (another clothes change - at this point they recognized me in diagnostic radiology where my mammogram and bone density scan took place) as well as a full set of blood tests.

I also am scheduled to have a fasting blood test next week, an echocardiogram, and then back to see her in a month to finish my physical (we never got past the cardiac issues) and discuss the results of all my tests. Next week I will stop by and get the results of all my tests to review (and over-analyze and over-research online) in private as well

So two doctors, five tests, and five clothes changes later, I am in the lovely place to wait called 'you have something wrong with you that could be very bad but we don't know quite what it is yet or how we are going to treat it'. I hate this place. But I do like my new doctor and think we can work together on this.

It all catches up sometimes

Today is the day I haven't been looking forward to, or maybe I have been looking forward to. I will spend the morning at doctor appointments.

My first stop is my back pain doctor where I can tell him in some ways my back is better these days between my new meds and the additional exercise I have been getting at the new gym I am going to. That should be okay. I have a few areas of concerns with my back but overall I'm doing okay.

My next stop involves a heavy dose of scanxiety as it is my annual mammogram. I was stupid (I have to stop doing this to my self but since I have this lovely blog I can look up my thoughts from anytime in the past four years.) But I digress, I was stupid, I looked up my results from last year's mammogram and some calcifications were found and while the radiologist recommended follow up in six months my surgeon thought they were nothing and said I could wait a year. And that is now year is up.

My third stop is a bone density scan. This will involve another change of clothing into a lovely set of pjs and robe (why don't I just wear my own?) for a two minute bone density scan to see if my osteopenia has returned.

Finally, if I am still on schedule, I meet with my primary care physician where I get to go through all my tiny list of medical issues/problems. Its not that long a list, but its not that short. I consider them issues and I don't think she can necessarily tell me they are normal. Actually I am quite firm in my stance that I want answers and not to be told 'well that sometimes happens to people'. I want to know why things happen to me. I realize somethings occur without any significant cause but I am pretty firm that I need to know more.

I think I am taking this stance because of the idiotic Dr. B I met with who told me he was collecting cases of hypertension with a secondary cause over the years and I clearly was not one. I was just fat, lazy, ate too much prepared food and salt. It is becoming clearer now that he was wrong, I do have something going on - probably related to my thyroid - that he ignored. He did upset me and I now realize I am overreacting to the whole situation.

Anyway, that will be my morning. If I am still sane by the end of it, I will go to the gym to destress. Then I will go out to dinner with a friend and get to complain about it too.

Cancer causes PTSD for patients and family members

There are not enough rocket scientist cancer people out there who could deny this one but it took a study about parents of children with cancer and a referral to a study of stress on breast cancer patients to paint the big picture. A cancer diagnosis is stressful - well DOH! - whether its you or a family member.

I think the issue of the stress level of family members is finally getting more attention. A cancer diagnosis does a number on everyone in the family. I have seen more emotional people talking about their family member's cancer and fewer emotions from the patients themselves. A cancer diagnosis is hard to cope with - facing the unknown.

If you are the patient in treatment, you get a whole group of people to help you - doctor, nurses, social workers, etc - who are on call 24/7 for everything from the sniffles to new symptoms. You get lots of TLC. They want to make sure you stay healthy enough to continue your treatment and are not reacting to it in bad ways.

If you are a family member of a cancer patient, its close but not the same. The doctors are focusing on the patient but include you in the conversation. You may be able to see more of the big picture but that doesn't mean it is a rosy, optimistic one.

I have been on both sides of this lovely little situation so I can tell you its not easy either side. At my first cancer diagnosis, I was a kid, I didn't really cope. At my second diagnosis, I was much more proactive and said 'look, tell me the information'. Then with my husband's diagnosis, I spoke up and said to the surgeon 'I've had cancer twice so we have an idea of what to expect for treatment options'. That actually was a good idea as the surgeon opened up and talked to us more.

It should not be a surprise that the word cancer has nasty overtones (hurry up with the damn cure will you?). And the resulting level of stress can do nasty things to your sanity, brain, and body. I think talking about it as opposed to ignoring the giant elephant in the room will make a huge difference. But the stress will take a long time to go away, if ever.

Lessons from preschool - sharing is good

Medical researchers who didn't learn sharing and playing well with others need to go back to preschool to try again. There is a new study on medical studies. (Just what we need - a study on studies. What's next - a study on a study on studies?)

Anyway, it says that the proximity of people has a correlation with increased significant breakthroughs in research. I live outside Boston which is a pretty geeky city and full of medical research. It turns out more medical breakthroughs happen here than elsewhere because people are so close together. And when people share buildings there are more collaborations. And when they share floors and talk in hallways and elevators, there are even more.

Back in January, I think I blogged about the Broad Institute and how it is a new place full of collaboration in medical research. And now this study validates what they are doing there.

Sharing ideas is important. Talking to others is important. But I think researchers spend lots of time working in labs doing research, which is why they are paid to be there, but maybe they need to talk to others. So basically if you do research you should talk to people in elevators and hallways. There are lots of us out there waiting (im)patiently for more significant breakthroughs.

Should your doctor tell you the truth or what you want to hear?

So you go to see your doctor because you have been sick for a week and you want some antibiotics so you can finally get better. Or you have a cough and are concerned its more than just a cough and think the doctor should give you a chest x-ray to make sure its nothing more. You get the point - you go to the doctor with an expectation of care you should receive.

But the doctor doesn't agree and says what you want is unneeded. Your cold is a cold and will get better, antibiotics will do nothing. Your cough is a cough and you don't need an x-ray. Should the doctor agree with you and give you the antibiotics or x-ray or should they just tell you the truth? I want the truth.

I don't want a doctor to sugarcoat anything (especially when they say 'you may feel a pinch' - I want them to say 'it will hurt a lot and grit your teeth'), I want them to tell me the truth. I don't like doctors who try to paint a fluffy pastel colored picture of my health. Give me the details and the numbers and I'll suck it up and cope with it.

Maybe other people are different, they don't want the truth in a big pile of information, they want little bits over time or just don't want the details, they just want a cure for whatever they had.

I like my breast surgeon, he is good for telling it like he sees it. He has said things to me in a very open style that tells me the truth. Some people don't like him because he tells things very plainly but I appreciate it.

I have also learned that just because I make assumptions about what I want for care, the doctors are the ones that have the training to make the decision on what is really needed. I let them make the decisions and tell me why I need what they suggest. But then I do make sure I agree with them. Its my body after all.

Knee pain and cures

I wasn't going to blog about medical studies because I have written so much about them recently but then I read the news this morning and this is what I found:

• "Exercise may boost stroke risk"


• "Why happiness may not always be good"


• "Low Salt Diet boosts heart attack risk"
  

So now I want to eat a piece of bacon and sit on my butt and pout. (I am not picking on CNN but they did coincidentally happen to list all three of these today.)

Do you see how confusing medical research can be? I am done reading them but amazed what I can find even when I don't try.

But otherwise, I am fine. I am ignoring all these (confusing) studies. Today I am amazingly over scheduled. I don't know how I do this to myself (but it means I wont have time to sit around and pout).

Well, maybe I am not so fine. I have back pain, knee pain, ankle pain, and my annual mammogram and physical next week as well as a bone density scan and a visit with my pain doctor. This week my knee doctor recommended a series of injections into my knee to relieve the pain - which work 60-70% of the time (and I am going to assume they are completely painless). Otherwise, the only thing that will relieve the pain is knee replacement and I would rather discuss that in another 20 years.

I just looked up the knee injections. They are called Synvisc injections. My personal rule is you can't have an ailment or treatment unless you can spell it and pronounce it. Then I made the mistake of reading the procedure they follow to do the injections. That was a big mistake. A new personal rule - never read procedures before they happen.

But all these doctor appointments mean homework. I need to make a list of questions for my new primary care doctor as I enter the contest to be the least healthy patient of the year. And how many more doctor appointments will I get as a result? I seriously believe I am a professional patient. This is year number five of doctor visits numbering over 50 annually. But that's next week. Today I will just get through my busy day.

A typical example of how not to present a medical study

Here is an example of how not to present a medical study. What is wrong? Because it has a scary title "Study: Weight Gain May Boost Survivors' Risk of Breast Cancer Recurrence, Death" and ends with:

"The findings don't necessarily mean that everyone with middle-age creep is at higher risk of dying from cancer — the authors say that more work needs to be done to clarify whether there are thresholds of weight gain that trigger increases in risk, and more studies need to explain how weight and cancer are related."

I am not targeting this medical study - I am sure it was done with the best of intentions and had some significant results somewhere, I am merely using it as an example of how not to present study results.

This happens all the time - they come up with a scary title that basically says "You are doomed and are going to die". Examples are:

• "A new study has proven that use of plastic increases carcinogens in your blood."


• "A new study has proven that eating red meat is bad for you but they aren't sure how to get enough protein without red meat if you are allergic to legumes and soy".


• "A new study says breathing normal air causes lung cancer".


• "A new study says eating will make you fat".


• "A new study finds exercise can be dangerous".

Then they ramble on about the study 'we aren't really sure why this happens' and end with 'more studies are needed to decipher what we just figured out and see if it is significant in anyway'.

So my thought is that I will ignore this study because I have gained more than 5% of my diagnosis weight (which is a number you will never know) and stick with the fact that they don't know what this correlation means at all.

PS Please stop with that stupid survivor label. We aren't survivors. We are people living with a cancer diagnosis. I didn't survive anything more than a bunch of doctor appointments.

I am not just another medical chart

So yet another study came along but this is one I like and will incorporate into my doctor interactions.

This new study says that patients who bond with their doctors are more likely to get better and doctors who show hope and optimism have patients who are more likely to get better. While the study focuses on mental health issues the article goes on to add that it is applicable across all medical ailments and diseases.

What does this mean to me? That I will be more active in who my doctors are and treat the first interactions more of interviews - where I am interviewing them - than as blind acceptance of in who ever's office I ended up. A doctor is someone who you (or your insurance) pay for a service. There is no reason to stick with one you don't like or who doesn't listen to you. If you don't like them, find another one.

In the past few years I have mostly gone to new doctors who I have researched and asked questions about. I want ones who will listen to me and not disregard my concerns. I am not just another medical chart to be reviewed and treated - just as I am not just another number at the deli.

The past few weeks I am thinking about the idiotic Dr. B who ignored me about my concerns and my habits and blamed me for blood pressure issues. It turns out since that he was wrong and he did upset me significantly to the point that if I am referred to any other doctors in the near future I will probably be on the defensive side. I am almost at the point of writing to the hospital to complain about him or at least complaining to a patient advocate.

What do I want in a doctor-patient interaction? They don't need to be my friend. I don't need to be able to call them 24/7. I do need to be able to get an appointment if needed within 24-48 hours. I do need to get some follow up when/if diagnosed with something new. I do need to be listened to and not discounted when talking about what bothers me - why I am there. Am I too demanding? I don't think so. I am happy to vote with my feet.

Do doctors understand this? I think sometimes they do and sometimes they don't. This depends on both their bedside manner and their personality as well as size of their ego. Most I think do try to reach out to their patients.

Sometimes patients too need to realize that doctors are not miracle workers. Its a two way street. If you make demands of your doctor they are going to react badly. If you expect your doctor to change your treatment protocol every week just because a new study came along, your expectations may be wrong. A treatment needs to be tested and proven to be put into use. A patient needs to listen to their doctor and follow their instructions. If your doctor tells you to take a prescription, exercise, eat right, etc, yes it is advice but if you don't follow it, you won't get better.

I don't want to be just another medical chart. I want to be a patient who actually works with their doctor to get better

Insurance is only part of it

Having health insurance is only part of the solution. Here in Massachusetts we have state health insurance so basically everyone has access to health insurance. This is a good thing and one of the things that went along with this was the premise that people would go to their regular doctors instead of emergency rooms. Well that part didn't work. ER rates are higher than in the past.

The problem was insurance was made accessible but we didn't create an infrastructure so that people could get into see their doctors. We need to make doctors more accessible. There are too many patients for each doctor (I don't have the numbers so you can just take my word for it) and often people resort to ERs for medical care because they can't get into see their doctor in a reasonable amount of time. If you call your doctor for a problem and they can't see you for a month, that is a problem.

I have a plan A, plan B, and plan C for medical care. My plan A is I call my doctor's office and see when I can get an appointment. My doctor doesn't have evening hours but some of the ones in her office do and usually I can get into to see a doctor on the same day. My plan B is to go to the hospital's walk in clinic which is open most evenings and on Saturday mornings.

If I am dripping (a lot of) blood, I will resort to plan C which is to go to the ER. I have to be dying or losing a lot of blood before I will go to an ER. I have spent too much time sitting around ERs waiting - even when I have gone there on a doctor's orders and then had to wait six hours to get into see a doctor and then another six hours to be admitted. At that point I should have just waited and called my doctor in the morning and gone to see them then.

Anyhow you get my point, now that insurance is getting more accessible, the next step is medical centers and doctors need to make access to doctors easier. I don't think we should blame the doctors but we need to ask the medical centers to look at how they schedule them and at the doctor's load of patients.

More on helping if you know someone with cancer

As a follow up to yesterday's post on helping people with cancer. What can you do to help? How can you help? While a cancer or other diagnosis doesn't mean life is over, it can make things difficult.

I assume everyone has the best intentions and wants to bring over a meal or something to help but with cancer, a casserole may not be appreciated. If the person cooks for their large family, casseroles may be appreciated but if a smaller family or someone else cooks, I would definitely ask. And as a reality check, how many casseroles can one use at a given time? While in chemo, food can lose its appeal. I don't like shrimp any more. While in chemo, scallions made me nauseous.

I think the best thing to do is ask them, their spouse or other family member how you can help. Maybe they don't need food but need someone to help get the kids to school or be there for them after school so both husband and wife can go to treatments together. Or even help getting the kids to or from sports or other events. Or maybe they need rides to or from treatment. Or maybe just picking up prescriptions to getting groceries for them. Or maybe help with laundry or house cleaning or more. Sometimes, they just need people to stop by and chat since they aren't up to going out and socializing.

When I was in treatment, I had a total of 16 chemo rounds over five months. The first four were pretty awful and my husband made it to all of them. But there got to be a limit to how much time he could take off from work. My last 12 treatment were weekly doses of Taxol and I started to feel better so sometimes when he couldn't stay, he would drop me off and my parents would pick me up. That worked for me but other people may not have the luxury of local family members to help.

I ran across another cancer blogger recently and on her blog she has posted a page on her blog about how to help her which basically sums it all up. The little things in life like going to the grocery store or doing laundry can get very complicated.

When you have cancer or other nasty ailments, life goes on and you have to cope with your life as well as your diagnosis. Help is always appreciated.

Cancer news

Why is it when a celebrity gets cancer it becomes international news? But when a regular person gets cancer, people run away and hide? I mean the latest celebrity to get cancer is the man who was just recruited by the NFL, shouldn't he be allowed to cope with his diagnosis and treatment with a little privacy? The last thing a chemo patient wants is a camera following them around as they lose their hair and try to keep down their food.

The lack of sensitivity in the media is awful these days. Reporters are aggressive for stories and have to get the scoop. Stories get blown out of proportion and what is little news becomes big news. Media hype causes a lot of problems but that's not my topic.

My topic is cancer diagnosis and privacy. Well not just privacy but managing of privacy. A regular person gets cancer and has to cope. They tell who they want to at first and then all your friends and relatives know and people call and want to talk and you still are in 'cope' mode not in 'talk' mode. (That is all the friends and relatives who don't move to another planet so they can pretend the world is perfect and no one has a nasty disease.)

If some one is diagnosed with cancer, I wouldn't bring it up to them until they tell you. If you hear a friend has cancer through another friend, I would not rush to call them and talk to them about it unless the sick friend has told the other friend to please tell people. Its a time to give people space to cope and think things through.