Tuesday, September 2, 2014

Trying to scare or educate us?

I like these little articles found all over the internet: "signs of  [insert disease name here]". I just found one this morning for signs of oral cancer.

Oral cancer is not something that has crossed my mind really. A few years ago I had a pocket appear in the back corner of my mouth and the dentist (stupidly) said to me "Well it doesn't look like cancer but you really should have Dr F look at it to be sure." Note: never say that to someone with cancer.

But these are the signs of it so you should see your dentist regularly:
  • A sore on the lips, gums, or inside of your mouth that bleeds easily and doesn't heal
  • A lump or thickening in the cheek that you can feel with your tongue
  • Loss of feeling or numbness in any part of your mouth
  • White or red patches on the gums, tongue or inside of mouth
  • Difficulty chewing or swallowing food
  • Soreness or unexplained pain in your mouth, or feeling that something is caught in your throat with no known cause
  • Swelling of the jaw causing dentures to fit poorly
  • Change in voice
Now that I have this list, what should I do? Of course there are little lumps and bumps inside my mouth that I can feel with my tongue. I don't have dentures so that one is out.

Now that I have this list I can obsess over it for as long as I can remember it.... That's the biggest problem. We get a list of signs to look out for whatever the ailment is. We read it. We think about it. Then our brains are full and it falls out, or we convince ourselves we have it and rush off to the medical professional insisting that we are going to die!!!!

Scared or educated? I'm not sure.

Monday, September 1, 2014

Living with medical errors

I have a picture some place of when I went for knee surgery in 2001 of me home from the hospital with a big bandage on my right knee and the word "NO" scrawled in big letters on  my right knee. This was written by the surgeon after triple confirming with me.

Then I have the memory of me after gall bladder surgery in 2008 where I heard the nurses talking about the excessive bruising on my abdomen after a laproscopic procedure. Basically I heard the doctor must have been really rough on me because of the size and speed at which the bruise arrived - and ho w long it hurt afterwards.

In the past few years the state of Massachusetts has started requiring hospitals to report medical incidents - anything from a fall, surgery problem, wrong medicine, bedsores - annually. In the past three years - 2011-2013 - the rate has risen extensively from 366 incidents to 444 to 753 in 2013. And you say 'why the increase?' How about the electronic reporting system was adopted in 2012.

This all makes me say hmmmm..... Its nice the state wants the data reported and is requiring the electronic reporting system so that things can't be swept under the rug, so to speak. But what about me as a patient?

There is all sorts of advice given but I think it goes down to your comfort level. Lets face it, errors happen in life, 'to err is human'. But as patients we need to speak up and ask questions - what will happen, what should I expect, and communicate with family members so they can ask questions.

I would like to say that of the 753 events in 2013, 282 or 37.5% were from falls. The next largest group was 230 or 30.5% were from bedsores. The leading number after that was 44 serious injury or death from medication error.
 

Sunday, August 31, 2014

Back to reality

While we are back from vacation, I am trying to stretch out the relaxed feeling for a few more days - until I go back to work Tuesday morning.

What is reality?
  • Getting on top of my list of doctor appointments.
  • Refilling prescriptions needed
  • Return library books
  • Catching up with friends
  • Laundry
  • Grocery store
  • Unpacking
  • Take care of outstanding volunteer work for two organizations.
  • Making the cat understand we did not leave him FOREVER and are BACK for a long time.
  • Taking the car for a very overdue oil change (don't tell my husband) 
  • Planning for a visit from college friends from out of town.
  • Thinking about upcoming medical adventures (yuck)
  • Planning for my upcoming fall schedule of craft shows
  • Making all my items to sell at the craft fairs
  • Planning for our next trip out of town (family vacation)
Never mind taking care of my husband and my cat....

Its starting to come together. I am ignoring the weeds in the garden for now as well.

Sigh. I like vacation better than reality.

Friday, August 29, 2014

My hyper-focused life.

My life,and my blog, seem to be hyper-focused on breast cancer. Yes I acknowledge in my (Breast Cancer) blog that I have other ailments but I have never changed the focus of my blog even though I have questioned it. I still blog about breast cancer because it is part of my life. And I write about changing the focus of my blog but haven't.

However, I read this morning there is another disease which is more prevalent than the one-in-eight statistic for breast cancer that is tossed around. It is Alzheimer's. And the writer makes a valid point that breast cancer is full of ribbons and magazine articles on it, Alzheimer's is not.

When I first saw the article title I thought she would be writing about heart disease and felt a little pang of reminder that while two cancer diagnoses don't necessarily keep me as a potential member of the centenarian club, I do have obligations to keep other parts of my body in good shape. It never crossed my mind that Alzheimer's was that prevalent. And its just a nasty way to go.

With that said, my life should not be focused on breast cancer or living with whining about my ever present ailments. I also need to expand my tiny horizons and think about staying healthy to prevent additional, nastier ailments.

A cancer diagnosis kind of makes you take a second thought on long term planning - why am I saving for retirement at this point???? Taking care of myself and thinking about other ailments is probably just as important.

Thursday, August 28, 2014

Year round pinkification

Estee Lauder is going to new lengths to create year round pinkificaiton. In October 2014, they will offer story telling videos of four families facing breast cancer. They made sure to include young and old, Asian and African Americans so it can't be deemed racist, sexist, or ageist.

They have two good reasons for running the campaign year round. The first is that with breast cancer its a year round diagnosis, not just one month of the year. That is clearly been a complaint for decades. But the other is their multimillion dollar campaign won't fit into one month. I am sure they could have made it fit into one month but it doesn't really impress me yet.

There will be personal touches through the storytelling....

"The company plans to add a personal touch through storytelling, via documentary-style online videos featuring four real-life families affected by the disease. Viewers are also encouraged to upload their own videos and stories, which may be featured on the site in the future."
Will that include the hairless body and rushing to the bathroom. And maybe they will get extra Estee Lauder makeup to cover the chemo pallor.

"Some of the donations will also come straight from the company's own pocket.  The Breast Cancer Research Foundation will receive portions of sales from 15 "Pink Ribbon" products with brand names like Aveda, Bobbi Brown, Clinique, La Mer, Origins, and Estée Lauder itself. Furthermore, the retailer will donate one dollar for each uplifting photo shared on one of their social media platforms (with a cap at $22,000)."

And the truth comes out in two little statements. first of all the BRCF will receive portions from the sale of 15 products? And how much would that portion be? A tiny $0.50 on a $50 product? That is one issue here. The second statement is the $22,000 cap on the photos shared. Does that mean they will only donate up to $22K for all the pictures shared or $22K for each of the pictures shared?

"While Estée Lauder had been planning to focus heavily on Internet platforms for some time, the recent success of the ALS Association’s Ice-Bucket Challenge proved the effectiveness of online activism, with nearly $80 million raised in one month, compared to $2.5 million last year."

Well goody for them. They are using social media and internet platforms and want to tap into the online activism as with the Ice Bucket Challenge. Sorry. I doubt it. The ice bucket challenge worked because it was a single guy who started it, not a corporation and it was a nice hot summer time where a bucket of ice isn't so bad. January would be bad. Its very difficult to create an online viral success. the best ones are teh spontaneous ones that cross borders, touch a nerve with people, and have a sensne of humor and one-up-manship (I triple dog dare you to dump a bucket of ice water on your head). 

I'm sorry a pink ribboned product isn't going to make me do much of anything. And some ad agency must be raking in big bucks for all of this.

Wednesday, August 27, 2014

I'm not that standardized

Here's a new proposal. Give surgeon's a black box to help prevent medical errors, like they have in air planes.

The proposal:

"Inside the operating room, video cameras track every movement. Outside, a small computer-like device analyzes the recordings, identifying when mistakes are made and providing instant feedback to surgeons as they operate.

This is the dream of the surgical "black box." Operations could become flawless. Post-operative complications could be significantly reduced. Surgeons could review the footage to improve their technique and prep for the next big case."

The goal is so a surgeon learns of a mistake when it can be corrected and not after the fact. They get a computer assist. And more significantly they could be adopted in the US without FDA approval as they are not a device or anything.

I'm not saying that I am against improving medical errors or anything. I have myself dealt with a few mishaps in the OR but I do not think the human body is standard enough for this. Each human is unique. That's it. We are all one of a kind.

If someone wants to operate on me, I have many issues - from lack of thyroid, previous surgeries which have left scars, and more. I know they can be programmed into a computer before hand but still.  An individual human being is needed who can interpret the information and unique qualities of the body they have opened up in front of them.

I think of it this way. You are going to a strange place and you program the address into your GPS and start on your merry way. But then the GPS sends you to a road which has a detour and it recalculates around it, so you keep going. It even tells you when you are speeding to give you additional information and recalculates your arrival time. Then it forgets to tell you that the off ramp is on the left and not the right. And then there is an accident ahead so you try to get off the highway and make another detour. And then your GPS sends you down a one way street in the wrong direction.

You needed a human there to guide you to read the signs and notice the detour ahead. Or to tell you about a new problem the patient is having.

A friend had a bad colonscopy and had to have a colectomy. The surgery took much longer than expected because the doctor who removed the polyp at the colonscopy did not note correctly where it was that it happened so the surgeon had to spend quite a bit of time looking for the exact spot. What would that little black box do then? React like the robot in "Lost in Space"? 'Danger, Will Robinson, danger!' That wouldn't exactly prevent much of anything.

There is research going on with these currently in Canada with plans to test them in Canada, Denmark and South America.

But I am really not ready for them to be used on me anytime soon. I would rather have a better trained surgeon than a computer assisted surgeon operating on me.

Monday, August 25, 2014

Can you cure ALS with a bucket of ice water over your head?

Is it the same as putting a pink ribbon on breast cancer? Don't get me wrong here, I think the ice bucket challenge is raising awareness of a horrible disease and it is increasing donations to a worthy organization (unless you are Catholic and have a problem with the stem cell research they advocate). Before you grab your big bucket of ice water and are thankful this challenge is going around in August and not in January, please take a moment to think.

Is what the ice bucket challenge is doing for ALS more than what a pink ribbon does for breast cancer? Seriously.

For everyone who wore a pink ribbon or did the ice bucket challenge can you please tell me three specifications on each disease? Statistics, or life expectancy, or number of people living with it? What does ALS stand for - spell it and pronounce it without looking it up?

While awareness is great and donations are even better, we all need to step out of our little bubbles and learn about these horrible diseases - and there are many more - and what else can be done besides painting the world pink or pouring ice water on your head.

And is this just a passing fad? Or will it be an annual event every summer where the world pours ice water on their head to make a horrible disease look easy and then everyone dries off before pulling out the pink stuff?

Sunday, August 24, 2014

Challenging myself


As you amass ailments, you start crossing things out from the list of things you used to enjoy but no longer. I have a very long list of things I used to enjoy and can't any more. I used to kayak. I liked to kayak. I stopped kayaking when my back starting going bad. Then rheumatoid arthritis complicated things a bit more. Combined with lingering tennis elbow in my right arm. I often wear a wrist splint on my right hand as well to reduce the pain in my left elbow and wrist.

Then we came to Cape Cod on vacation with my family. My brother said he was bring kayaks - one hard shell and a couple inflatable ones. In my mind, inflatable kayaks are like any other inflatable boat - you don't really have to worry about ramming into anything because you will bounce off. But they are impossible to steer - like trying to paddle a balloon. You get my drift (okay that was a bad pun) that I am not interested in paddling an inflatable boat. I figured my brother and his four children would be happy with those kayaks and I would stay away.

But then it turns out two of the four children don't like to kayak much. One of the two remaining children who like to kayak also likes to sleep late. Leaving one child who might want to kayak but temper tantrums are not invited.

The other morning, my brother, husband, and I set off on a morning kayak. I wasn't sure how far I could go and how my arm would feel - as well as my back and shoulders and other body parts - but I  just went. My brother was so confident of my abilities he brought a long bungee cord so he could tow me back if necessary. My husband limited himself to giving me advice not to over do myself.

But we kayaked. I did fine. Getting out of the kayak was another story because I landed on my butt in three inches of warm ocean water - and then I had to stand up from the ground. But I was wearing my bathing suit. I did need a nap but didn't feel horrible amounts of pain during or after kayaking.

Yesterday morning, my brother and I were up early and decided to go kayaking again. We were discussing the complete lack of wind and how calm the water was.... Until we put the kayaks in. Then the wind immediately blew up and the tide was running hard out. We chose to paddle slightly downwind across the channel so we could paddle along the leeward side of the island. Finally I needed to stop and turn back - my shoulder and arm were telling me it was time.

We paddled back along the sheltered side annoying the birds until we got to the channel Then the fun began. We set up our plan. My brother offered to tow me. I said he could go behind me in case I ran into problems. It was a hard paddle diagonally across the tide current and the wind, but I made it.

In thinking about it, I really did challenge myself to try something I haven't thought I could do for several years. I am not sure I am up to kayaking again this morning because I can still feel it in my arm. But I did it successfully. I didn't have to hop in and swim for shore or get towed in and I didn't cause excessive amounts of pain.

I'm happy. That was a big personal success.

I think as a long term patient, I have let myself get in to the realm of being a patient where I find it easiest to say no I cant instead of challenging myself to see if I still can.

Friday, August 22, 2014

Why do I do what I do?

I'm not talking about cancer, I'm talking about volunteer stuff. I never used to volunteer. I mean rarely did I volunteer. I was too busy having a life, or trying to at least. Ten years ago, I got bit by the volunteer bug and now I seem to fill my life with volunteering.

In the past ten  years I have: been on the board of the friends organization for the town library, volunteered at Komen events, volunteered with Relay for Life, volunteered at the local cancer support organization, worked at the annual conference for NEDMA, help the Cystic Fibrosis Foundation with their website for their annual fundraiser, briefly helped with the local chapter of the American Diabetes Association and one of their annual events, helped NECCS with their annual luncheon and fundraiser, and volunteer with Casting for Recovery. There's more but I can't remember.

So why do I do all this? Because it makes me feel good. I don't do more than I should. For example when I help CFF, they send me an email and say can you please update our website with this information. Or I helped NECCS with their vendor round up. I could do it from home and not have to leave the house.

I help several causes. Many are cancer related but not all. I have decided that is not as important as I previously thought.

But before 2004, I never volunteered. Especially for cancer stuff. I didn't want to be as open about my medical stuff than I had to be.

But now I wonder why I didn't. I volunteer with people and I have no idea if they had the ailment or not. Nor do I care. Because that's not the important part of volunteering. The important part is getting that warm feeling from helping others and see a smile on people's faces when they experience it.

And I can show them how I got through cancer treatment and there is life on the other side. But then I have to admit I had cancer too - and that's part of my healing process too.

Thursday, August 21, 2014

Research turns theories upside down

I read Dr Susan Love's blog - she writes well and she knows her stuff - and I have heard her speak so I feel a connection. Recently she posted about some interesting new research which has some wide implications. While the research itself sounds interesting, I am more interested in Dr Love's comments about the research.

She makes the point:

"Two new papers have been published which are causing many to reevaluate their thinking about cancers and which cells are important.  Once again, our previous theories have been stood on their heads!"

So what was believed was wrong. We need to remember that. As research progresses and we learn more and more about things, we often find we were completely wrong. (The world used to be flat, wasn't it?)

We have to remember that when new research proves other research wrong, it doesn't mean it was anyone's fault. We didn't know there were options. We didn't have the technology to know then what we know now. Sometimes we have the tendency to say 'If I had that treatment, I would be so much better off.' But we can't beat ourselves up for that.

On the flip side, we have to remember as we learn more and more about cancer, those pesky five year statistics tables are based on old technology so they are outdated. And we can assume, rightly so, that our odds are better than those stupid tables.

And more research may disprove the latest breakthroughs in the future but we are doing as best we can in the interim. Meanwhile, back at the ranch, I am still waiting for that cure for cancer that Star Trek says they discovered in the 21st century.

Tuesday, August 19, 2014

Life with chronic pain

I was very intrigued to read this article on a man's advice on living with a wife in chronic pain. I admit I might be guilty of some of the first ten myself. My husband does pick up on when I am overdoing things and cues me to take it easier.

I also know sometimes when I want to do things and feel like I should do them but just don't have it in me. I try to work around it. I'll lie down for a while and then try later on. Or I'll put it off until the next day. Sometimes I ask my husband to do things for me - like making dinner - because the idea of standing in the kitchen for ten minutes just isn't a good idea.

If you read his list, you will get a better idea of what  life with chronic pain is like. And its all relative. His wife had a C-section without anesthesia (eek!) and that's her high pain point. My high pain point was probably when I tried to stand on my blown out knee on the side of a ski slope. Or when I had my drain pulled out. Or... I don't know. Those were all very painful moments and there are others.

For me when my back hurts so much I can't stand up, I call it a 7. Right now, sitting in bed after a good night's sleep it might be a 4. But I'm not telling my husband so we can play mini golf and go for a walk. I'll sit in the car and let him drive as we go off to have fun. But I'll also take my bottle of pain meds with me just in case it gets a little farther up the pain scale.

.

Monday, August 18, 2014

Insurer bias - or why insure (expensive) sick people?

One of the big issues with healthcare reform was so that sick people could be insured instead of being left hanging at the mercy of their insurance company. The act did eliminate pre-existing conditions from precluding someone from health insurance. But the jury is still out as to the bias issue.

Several groups are claiming that bias is creeping back into the insurance system. First patients try to figure out which plan is best for them. But the information on what drugs are covered and what are the co-pays for them are not on the top of the list of information.

For healthy people, this would not matter usually. But for us non-healthy people with potentially expensive medications, this does matter. I have one drug that my copay is $105/month. I consider that expensive. But its not. Some co-pays are in the thousands. If a drug is $80,000 or $100,000/year or more and the co-pay is 35% of the retail price, you can do the math.

I can see the issue insurance companies are facing. Sick people are expensive to take care of. Their medications can be very expensive. They require many doctor visits, and maybe surgeries, procedures, and hospital stays. Hospitals can negotiate with insurance companies to get discounted rates. But they don't seem to get anywhere with pharmaceutical companies in terms of negotiating prices.

Pharma companies claim that drugs take so long to develop and one in several hundred or thousands actually make it to market which is why that charge such prices. Then there are the whole positioning factors which come into list prices (this is true for everything from a candy bar to a car) as to what image they project. Expensive means it must be better. That is a whole other discussion that I have blogged about before and am sure I will again.

Back to the insurance companies. They put all these people into a pool and the premiums paid cover all the sick and healthy people. But the really sick, screw it up and can cost them lots of money. So insurance companies look for ways to cut costs and big ticket items, like expensive prescriptions, are on the top of the list.

And they hide the co-pays and things like that because its only in the details. And they say things like generics are this much, and branded drugs in this category are this, and the next category, and the next category, etc. And its not simple and easy to figure out.

To figure out what you would pay if you are sick, you can't just compare premiums, co-pays and expected number of visits from each company and get a number you think is the lowest. You need to call them and get them to tell you the costs of all your branded prescription drugs, plus you add in the number of expected doctor appointments, their co-pays, out of pocket maximums, and all those fun things. Then you get to decide. But its a lot of work.

Each year  you need to review where your drugs are in each little category and their new co-pays. And what if you need a new drug mid-year and it comes with a whopping high cost?

I don't think I blame the insurance companies but I think the data needs to be a bit more available for all of us sickies.

Sunday, August 17, 2014

Double mastectomy or not?

The latest fashionable breast cancer decision is to have a double mastectomy in a preventive effort. Well there was a super secret twenty year study going on about the benefits of that very same surgery.

Basically what it boils down to is that unless you have the BRCA gene or other hereditary breast cancer, there is no benefit to removing a healthy breast. And the potential complications of the surgery can have a negative effect on the patient.


"Tuttle and his coauthors used published data to develop a model for predicting survival rates over 20 years for women diagnosed with stage I or II cancer at age 40, 50 or 60.

According to the existing data, more than 98 percent of women diagnosed with stage I breast cancer will survive at least 10 years, and 90 percent will survive for 20 years. For stage II breast cancer, 77 percent survive for at least 10 years and 58 percent survive at least 20 years.

For all age groups and tumor types in the study, the risk of developing cancer in the opposite breast after diagnosis was less than one percent each year, the authors wrote in the Journal of the National Cancer Institute."

So this study shows that while some women may want an elective double mastectomy, there is no benefit. I was also pleased to see the ten and twenty year survival rates (which are difficult to find) for stage I and II breast cancer. I am moving away from the five year time frame and starting to think about the ten year time frame and longer. And no I didn't even consider a single or double mastectomy.

Saturday, August 16, 2014

Why do they do that?

I have a policy with myself for when to call my back pain doctor. When I get to the point of needing 2-3 breakthrough pain pills to get through the day, its time to make the call for an appointment. I have been at that point for a while and got in to see him yesterday afternoon.

My points of discussion with him were two: My right SI joint is in serious need of having its nerves killed off and my varying total back pain needs to be discussed. We don't always change my pain meds at a single appointment, we often discuss them over a few appointments before making changes.

My right SI joint (which is the long seam joint down the side of your tailbone if you are wondering) has been giving me problems for months. We have had the treatment discussion before but previously we have focused on other pain areas.

Yesterday afternoon, he  had me lie on the exam table and he moved my legs around and pressed on my hip. That hurt. Then he had me lie on my side and he pressed right on the SI joint. That was like a live wire running through me. I had to catch my breath after.

I think he realized how much it hurt and said he would send the nurse in to schedule my treatment. It took a while for me to recover from the amount of pain. I know he had to make sure he knew where the pain was coming from before heated needles to kill the nerves - because you really don't want to kill the wrong nerves.... But, yowza!

October 25 is the date for the treatment... It will be three years from the last one, which was the second one on the same place. These treatments (radiofrequency) can be repeated over and over again and each time the nerves come back, it takes longer and longer and they are weaker and weaker so the pain levels are less and less.

On a side note, my pain management doctor says I can actually take up to 8 break through pain pills a day and he considers 2-3 a day a very low dose. But my rheumatologist tells me that from her point of view, 3 should be the maximum because of convulsions. Its the different perspective from the two doctors that gets damn confusing.

Friday, August 15, 2014

What to do about my boring blog?

My blog has devolved into something just plain boring, for lack of a better word. I will say I do not write for volume, I do not write for search engines or to build twitter followers or anything like that. I blog because it helps me cope with my devolving health. I do try to primarily write about breast cancer and related issues.

But my life has not been about breast cancer recently. Which is a good thing. I do not focus my life on breast cancer now. My life focuses on work, getting ready for craft fairs this fall, and coping with my back and RA issues as well as fibromyalgia pain.I have also upped my volunteer work to a level which is fulfilling.

I think I have gotten through enough of the breast cancer PTSD for now. It will never go away. I do know that. This month marks 33 years since my thyroid cancer diagnosis and that never completely went away.... (The answer to the question of does it ever go away is no.) But it does recede into your mind and make it easier to cope and live.  And allows room in my brain to focus on the rest of my life. And no there is no new me living a new normal. That is all a load of crapola.

So that is where my brain is so that is why my blog is boring. I will continue to blog and I will try to make it less boring.

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