Saturday, July 31, 2010

Its a different perspective

There is a 20 year old woman in the US who has had cancer for ten years of her life and has now been told that she has between six weeks and four months left. Her friends threw her a bridal party complete with a wedding gown and it will be featured in an upcoming issue. She doesn't appear to have a boy friend who she might be marrying but I think she just wanted the party.

On one hand, it seems a bit silly. Why go through this party stuff if she's not getting married? But on the other hand, if it is something she wished she could have done - get married that is - there is nothing wrong with it.

I think if someone told me I had between six weeks and four months, I would start making a list. Often people just die with no notice. You could get hit by a bus, be in a car or plane crash, fall off a ladder, hit your head diving into a pool or lake, or any number of reasons. You have no time to get your affairs in order and figure out what you want to do before you die because you don't know you were about to go.

If I knew I had at least six weeks, I would start planning. I would plan my funeral and figure out what I was going to be cremated in. I would figure out what I wanted done with my ashes. I would go on a few trips. I would walk on the beach as much as possible. I would forget about my diet and eat fried clams as often as I wanted. Ice cream every night as well. Sit out in the sun with no sunscreen - I'm not going to be around long enough for wrinkles and I might as well have a nice healthy tan. If it was winter, maybe I would go skiing one last time. It would not matter if it made my back hurt. Because I would not have to worry about doing long term damage. I could have a lot of fun.

There's a country music song that talks about living every day like you were dying. Hmmm... its all a matter of perspective.

Friday, July 30, 2010

Here's a solution: Education

So I wondered the other day, as you may recall, what can be done about clinical trials to improve them and possibly shorten the whole drug approval process. Well how about education? Apparently there are fewer errors and fewer patient questions simply by applying a little education to the process. There ya go, a simple solution that may be a start to solving a bigger problem.

In the meantime, here's some more education. We are supposed to take more Vitamin D - apparently people often lack it - but not supposed to take as much calcium - because it might cause hardening of the arteries. But, but, but, my doctor told me to take both of these... Should I change my doses around or just be confused for a bit. Well, I'll stick with being confused and save myself doctor phone calls and visits because I get enough of them anyway.

In the weird news this morning, they have recalled millions of frozen MICE because they are responsible for the salmonella epidemic in pet stores. Yuck! I had to read the title of this article to my husband twice. Yes, frozen mice. Who knew there was a business of frozen mice? But then what do snakes in pet stores eat? Canned snake food?

Finally, social media is finally catching on in the medical world. Many hospitals have electronic newsletters. All have websites. Some are on Facebook and Twitter. But now the Mayo Clinic has a social media center. I find this very cool. I wish my hospital had a social media center.

Do you feel more educated? Yes? Good!

Today I have a thousand things to do. Well not literally a thousand but close enough. I am going on vacation tomorrow. (And to all your burglars out there my big healthy husband, assisted by our large cat, is staying home.) I am going on vacation tomorrow with a good friend for a week. We are going to northern WI on Lake Superior and our plans for the week include a daily walk followed by daily lounging. But I still have to do laundry, get my seats on Southwest, and pack. And do laundry. And go to the bank. And meet a friend for a walk. And do work from home as well as go to the office. And we are going out to dinner tonight. I'm sure there is more but I can't remember.... Oh, a spend an hour figuring out how many pills I need to supplement my dilapidated body for a week.

Thursday, July 29, 2010

Medical conditions are isolating

I have found that all medical issues can be isolating. I was going to title this post 'Cancer is isolating' but its not just cancer, its any medical condition. We have all experienced the common cold where we decide to lie low for a day or two because we don't feel well - we don't want to spread our germs but we also don't feel like socializing and interacting with others. This is normal.

But what if someone doesn't feel well for several months - going through cancer treatment for example - where you don't want to make the effort (which appears to be huge) to pick up the phone and talk to your friends or go out and socialize because it might expend energy. Its not lying around feeling sorry for yourself, but just not feeling up to doing much. When this lasts for the six months of cancer treatment, the resulting feelings of isolation and ensuing loneliness can be very profound.

At a cancer diagnosis, the patient is stressed and trying to cope. Well meaning friends may offer to help but they are rebuffed by the stressed patient. The friends may try again and keep getting turned away as the patient is not feeling up to interacting. Talking about what their going through is admitting they are sick and their cancer is real. Good intentioned but misguided questions from friends can be painful to hear. Relationships start to fall apart. The patient isn't feeling up to interacting. The friends are feeling rejected because of the continued turn downs and call less often. And so the downward spiral goes on.

How to hang on to and mend the relationships? The friends need to realize the patient is going through a stressful life altering event. The patient needs to realize the friends really do mean well, even if they don't understand. As we grow and change through the experience the relationship may or may not withstand the pressures. And life goes on, the seasons change. People change. A nasty medical diagnosis forces unwanted change down the patient's throat.

Then I read that having a social life is as important in life as not smoking or drinking in terms of preventing health issues. This may be true but sometimes I have needed to put my social life in the backseat as I struggle with medical issues. For the past few weeks, my health has taken me on a roller coaster ride and I have been less than social. I did go out for dinner with a friend last night and it felt good. I will spend the next couple of evenings with my husband, as he is may mainstay. Even when I don't go out of the house, he is my social life, ensuring that I interact with another human being. The cat demands my attention - and food and water. I maybe living in a little cave of my medical crap but I am interacting.

Okay, I admit, I overdid things yesterday. Yes, me. I admit it. I did work from home but broke down and took a short walk - about 15 minutes because it was SO nice out. My hip felt okay while walking but when I got home, I needed to ice it. I went out to dinner with a friend and then we went shopping for a little bit. When I sat down in my car, I was in excruciating pain and I had to sit there for a few minutes before I could drive. I came home and iced my hip and took more pain pills. This means my hip has reached that bad period - where I am not in pain until after I am done what I am doing. This means I am in danger of over doing things regularly. (But I will be in denial and pretend its not happening. I will continue to take my pain meds until my hip stops hurting.)

Wednesday, July 28, 2010

Is the internet a substitute for the telephone?

So I created a blog for family and friends to follow my medical adventures, first with breast cancer and then with all my other medical maladies. It allows me to opine and whine to my heart's content. It also was meant to allow me to communicate my medical crap (that technical word again) to those who I thought should know in away which allowed me not to repeat the same thing again and again. I also get to have some control over how I convey the news - sometimes I don't tell things until I am ready to. Its a tiny bit of control over the chaos of my medical issues.

Some people started reading my blog and stopped. Some people never started reading my blog - some simply don't go on line at home and can't do personal computer things at work, some just don't care to keep up with it, what ever their reason, that's not how they chose to keep up. Some people read my blog regularly, some read it occasionally. What's funny with the people who read my blog regularly, when I hear from them, sometimes I think that they think we have been talking regularly so when we do talk, the conversations are punctuated with 'didn't I tell you that already?' I see the humor in it.

There are people who don't read my blog and we keep up on Facebook as I whine there regularly. I don't know how I survived without FB. I am back in touch with my elementary school friends, as well as college friends, and cancer friends. And relatives are there too. My mother just got on FB to keep up with my cousin, who is spending the summer in Alaska, and her photographs - which she posts weekly when she is actually near an internet site. I am also on LinkedIn and several other online communities. Actually I am on so many online communities I can't keep up unless they send me reminders and updates - or I forget about them. (And how do I keep track of all these passwords - that's another story all together...)

Then there are the people I never hear from - who don't read my blog, don't go on FB,dont go on LinkedIn or other sites, and and never pick up the phone. Are they supposed to be friends? But I digress - that's another story.

But then there is a whole world of people out there who care about me - who I have never met - and who read my blog or stay in touch on FB. They are friends of friends and cancer friends who I connected with on varying online communities. They are friends who I will probably never meet.

But where is the telephone in all this? We know text has replaced phone calls as a means of communication. I don't text much so that doesn't really count for me. But the phone doesn't ring my either. I do get regular phone calls reminding me about doctor appointments and follow up from doctor offices. But I don't talk much on the phone anymore.

Is the internet replacing the telephone in my day to day communication? I think it is. I can communicate with many at once instead of calling one at a time. And then what I do online is waiting for others when they log on. The convenience of the internet vs. leaving voicemail for one person.

Tuesday, July 27, 2010

Generics and prescriptions

Living here in Massachusetts, there is a state law which mandates the use of prescriptions unless the doctor specifies 'no substitutions'. (I could be wrong, this could be a federal law but since I have no brain I'll just say state law.) All of my prescriptions, of which there are many - they cover the top of my bedside table, are generics except one - Femara which was released just a few years ago.

A recent study says that generics are just as effective as the brand name drugs. But we need to remember a generic is not an identical drug but (as the fancy word implies) are biosimilars - meaning they are close but not quite. Now there is a movement to shorten the 12 years in which drugs are protected from generics in the US. Basically biotech companies say they need the 12 years to recoup their development costs. Now this my be true as many drugs that are developed never make it through the testing process so they do have lots of overhead. I can understand this point.

I can also understand the issue that lengthy drug development allows for time for clinical trials and FDA approval. It is my understanding that the FDA is working on speeding up their approval process but this is not without issue as drugs are released and then recalled - Vioxx for example. If you cut the clinical trials time and speed up the approvals, are more potentially dangerous drugs made available to all? Generic versions make them more affordable - which is important in an era of skyrocketing medical costs.

Perhaps its not the drug companies or the FDA that are the cause of the problems? But perhaps it is the system through which drugs are developed? I am not an expert here but clearly we have some kind of problem. Biotech companies go through lengthy development processes and need to cover their overhead. Can the system somehow be changed to make it less expensive while allowing for safe drugs to be developed? You will note I am avoiding the topic of biotech company profits at this point as they clearly need to take a hit.

Anyway, I called my doctor yesterday to (whine and) discuss my pain issues. The call I got back was one that I really did not want. 'It can take up to two weeks for your hip to get back to normal. The procedure irritated the nerves that go into your hip and the need that long to reduce inflammation.' I don't recall this being mentioned in the pre-procedure information. Grr...

I have found if I take a pain pill and a Tylenol every six hours, the pain is manageable provided I don't do things like stand or walk for more than ten minutes at a time. (I cook dinner in ten minute increments and then take a break.) Sometimes lying in bed gets painful too. I was also told I could add a Motrin to the mix which I will add in this morning. (I just googled it and found out Motrin is a fancy name for ibuprofen.) If I take two pain pills, I am in a coma and can't function. For example, Extreme Makeover: Home edition was difficult to follow and I got the four episodes I watched in a row, all mixed up in my brain.

Today I have to go to work where I will mention I am on medication and I am sure my coworkers will use that knowledge to have a few laughs. Nothing like a bunch of supportive co-workers. Actually they are all very nice and care about me but have a biting sense of humor that is always flying around the office. But in a caring way. Now I am late so I must get moving.

Monday, July 26, 2010

Think before you eat

Someone pointed this article out to me. It makes me pack my own snacks for a professional sports game. If you read it, you will note that in Chicago, where the scores were good, they inspected when the stadiums were closed. Also, in FL where all the stadiums did poorly, apparently the state has stringent inspections. But regardless, I am not sure I want to eat at any of them. It makes me reconsider a lot of restaurants in general.

When we go out to eat, we assume that food is prepared correctly. We assume the basics - the ice machine is clean, they are not using the same knife and cutting board to chop raw chicken and a prepared sandwich. And that the food is cooked and stored correctly. The whole idea of it is EEEWWW!

I do like my own cooking and know that I may not always be up to restaurant food critic standards and am happy eating sushi, I do the basics in sanitation. I use separate cutting boards and knives for meat and vegetables. I cook things until they are done. I don't let food sit out. I do my best but I am also not trying to feed a few thousand people during a 3 hour game. You can see why short cuts are taken.

But then there are concerns about the whole food supply. Just because something is organic doesn't mean it doesn't need to be checked for quality. Think of it this way, if a vegetable is grown organic with cow manure as the fertilizer, wouldn't you want to make sure its really clean before you eat it? Also, what if a pesticide free vegetable has residents - like worms in broccoli or snails in lettuce. Finally, if you buy fruit and vegetables anywhere, how many people have handled them between the farm and your fork? How clean were there hands? Yicky!

Anyway, enough of that for now. Today I will call my doctor and whine a bit more. I woke up in the middle of the night because my hip hurt. I can't stand for more than 10 minutes with out significant hip pain. I did attempt to go to Costco yesterday with my husband and I'll just say its nice that they sell chairs because I tried out some of them. Today's plan is to only take one pain pill at a time so I can get some work done from home and swing by the post office and my office. My plan is to go to my other job tomorrow but that is a 20 mile drive. I am not sure I am up for that yet. I can switch my days if necessary so I'll have to see. I cant even go for a walk yet so I'm not sure I am ready to commit to an 8 hour work day.

Sunday, July 25, 2010

Breast cancer screening - why not?

Recently there was an announcement that breast cancer screening rates are around 80%, which while good, is not 100%. Advocates would like to see the rates higher. Yes, it would be nice to see them higher but I do not think it will ever be 100%. I think cancer screening tests are like genetic testing to some - they simply do not want to know. Some of us will think that it is common sense to get tested for something that would be caught earlier and it might be a lifesaving test. Others I think will say they simply don't want to know - if they are meant to get cancer, they will. I think this is also true of colonoscopies.

Personally I don't want to be genetically tested to see if I am more likely to develop a nasty disease (I already know I am more likely to get cancer so I'm quite happy with that). Is it like reading tea leaves? I don't know. They say that a genetic test will tell if you are more likely to get something but there is no guarantee you will get it.

Look at the BRCA gene testing for breast and ovarian cancer. It simply tells if you are more likely to get either type of cancer. Many women upon hearing that they are positive for this gene, have an oopherectomy and a bilateral mastectomy, just so they won't worry. Hmmm... I'm not sure I would go that far as to have preventive surgery. I think I would prefer increased vigilant watching and testing instead. My doctors are more likely to send me off for ttests than to tell me to wait and see.

Basically this all comes down to personal preference. Do you want to know or don't you? Its your body, your choice, your decision.

Yesterday I did not drive on pain meds. I walked, or attempted to walk. I went to the hairdressers (what an old fashioned word - I don't get my hair dressed, I get it cut) and got my hair cut. I sat while I was there so walking home was not as bad as on Friday. But I was not pain free. Today my goal is to be able to survive on one pain pill at a time instead of two. Yesterday I went from freezing cold to really hot/flushed all day long. It drove me crazy and then I looked up the side effects of my pain meds and there it was 'flushing'.

Today so far, my pain level isn't too bad. I did feed the cat, which meant I could bend down. But I did get up in the middle of the night and take another pain pill. But I will take another one shortly. My life on pain meds: I can't focus on anything. I can't read anything remotely intellectual (my brain works at the level of People magazine). I watched four (yes really) episodes of 'Extreme Makeover: Home Edition' in a row (no wonder my brain was so fried).

Saturday, July 24, 2010

How did we do it?

Yesterday (except for a tiny walk - more on that later) I spent ensconced on the living room sofa, 'working' on my laptop and watching shows on the DVR. I also spent time on Facebook, reading the news, checking email, etc but I did get a lot of work done. Then it occurred to me, how did we cope with being sick without the internet and the DVR? The DVR is wonderful, if you doze off during a show, you can back it up and you don't have to annoy yourself watching commercials. Yes I remember life before the internet.

In my childhood, it was a special treat when we stayed home sick from school - we got ginger ale and could watch Romper Room! My father talks about in the 1930s waking up in the hospital post op ward full of crying children - who weren't given any pain meds post surgery. My grandmother told wonderful stories about the summer she spent camped out in the backyard with her sister and a nurse in quarantine for scarlet fever. Times have changed.

Now, we have the internet, telephones, DVRs, and the world at our fingertips in case of a touch of boredom while not feeling well. But what did everyone do without these on the days when you weren't feeling well enough to read a book, be artistic or creative, or do much of anything? In some ways its hard to imagine but then in other days, it would be nice to be 'unplugged' at times.

Yesterday I spent the day on the couch because I had so much fun on Thursday at the hospital. When I got up yesterday I could barely walk, never mind bend down and feed the cat - he was very upset with me. I started taking my pain meds, 1 pill three times a day, and decided I was experiencing the 'new pain in my hip and legs' that was listed on the discharge instructions as a reason to call the doctor. I left a message around 830. Then I spent the morning with my hip on an ice pack, but still not feeding the cat without pain. I took another pain pill around lunch time and was doing okay.

Then I made a mistake. I attempted to walk five minutes to the post office and back. I hobbled back in excruciating pain and called the doctor's office again. Magically I actually spoke to the doctor. He said some pain in my leg was normal and was radiating pain - my knee hurt... He did say I could up my pain meds to two pills four times a day and to continue the icing and not to do anything considered exercise. Like don't go for any walks. It is more manageable then. I also need to call the doctor's office on Monday to tell them how I am doing. That is a sign I am having more pain than I should...

This morning it was fine until I decided to get out of bed. I thought I could deal with only one pain pill but shortly I will hobble up stairs for a second one. My plans for the day consist of a duplicate of yesterday except less work and more play. I will even go get my hair cut today. Its across the street from the post office so maybe I'll walk - I get to sit down and rest for half an hour before walking home. There's never any parking and I feel stupid driving two blocks. Besides if I am on pain medication, can I drive?

Friday, July 23, 2010

If this is what healthcare reform is all about, I'm really not sure

Yesterday, I had a lovely medical procedure on my back. My husband went with me. Usually I have been dropped off by someone and picked up by someone else so am basically on my own for the duration which is not a problem. Most of the time, no one is allowed to go with me. But yesterday's included sedation so I knew I would be waking up for a bit and preferred to have my husband there to hang out with me.

We arrived at the hospital in a timely manner (in other words, with all my procrastination, we weren't late). I was checked in and allowed to change into a 'lovely' gown with coordinated robe and my husband was sent off to the waiting room. Then they stuck an IV in the back of my hand - ow, ow, ow, and it bled all over the place. After a brief wait, I was taken in to the 'minor operating room' and they started the sedation which was meant for me to be pain free but able to hear them.

They started the needles and the doctor remarked that insurance was no longer going to cover the procedure. Hmmm.... I couldn't talk but I definitely wanted to follow up on the remark. I asked the nurse about this as she brought me to recovery and she said as part of health care reform we are going to see more of this, that insurance companies are going to stop covering procedures because, in the case of this procedure, they don't think it works. But why is an insurance company making decisions about what procedures work and don't? Isn't it up to a medical professional to decide what is the appropriate course of treatment? Who went to medical school here and has seen that patient? Not the insurance companies - they are just faceless voices on the phone after long periods of being on hold and told 'you are important to them'.

I am calling my insurance company this morning to be sure I am covered. The hospital admissions department was supposed to get a pre-approval last month when the procedure was ordered but I want to make sure. Actually I was told by one of the nurses that it is a best practice when ever a procedure is ordered to call your insurance company to ensure you are covered and get their name and a confirmation number of the call.

Anyway, so after the procedure yesterday I was in recovery with my husband. My pain level went up to somewhere around 9.5 out of 10. It was awful. They got me some percocet and it barely touched it. I was also shaking uncontrollably. And crying. And squishing my husband's hand. Then they gave me morphine and then some more morphine. Then they gave me Demerol. The pain finally subsided and the shaking eased up. They told me to go home and sleep and wait for the drugs to get out of my system. The theory was the shaking was a result of all the medications in my system.

I woke up 3 hours later feeling shaky but not shaking with my pain somewhat bearable. I figured out by looking in the mirror the pain wasn't where they did the procedure by in my hip instead. I slept so so last night. Today I will unproductively work from home and catch up on my DVR shows. After I call my insurance company that is.

PS I just called my insurance company and was told if a procedure is deemed medically necessary by the doctor, they approve it.

Thursday, July 22, 2010

The Medical School Decoder Ring

There is a project afoot to allow normal people to understand doctor-speak without going to medical school. Its called the Open Notes project but I think it really should be the Medical School Decoder Ring project. I'm all for it.

One of my favorite activities while hanging around pre and post surgery is to read my own medical file. Usually I understand most of it but not all. I have asked the doctors and nurses around to translate. Sometimes I get a copy to take home and then start googling all the words and phrases. But even with that, it doesn't always make sense. For example when the doctor writes 'patient denies' to the non doctor, it means you denied sneaking out after bedtime. To the doctor it means you said you don't have shortness of breath (or SOB). They might have written 'patient denies SOB'. And the average non doctor would be confused. Of course I'm not an S.O.B., how dare they write that! I am happy being NERDy (No Evidence of Recurrent Disease). See this is why we need decoder rings.

This morning I woke up early and gave up on trying to go back to sleep. I'm starving and can't have any food. This morning I have to be at the hospital at 830 to check in for another LOVELY back procedure. That would be #5 this year if you are keeping count (or #6 if you include the cortisone shot in my hip last month). This one is a radiofrequency denervation in my right sacroiliac joint where they kill off the nerves with heated needles. This means an IV and lots of needles in my back. I will be sedated and not really remember or feel it. Afterward, I assume I will nap for the afternoon which is why I gave up on trying to go back to sleep. I just have to decide what I want to eat when I get home... I'll figure that out later when my brain wakes up. Clear liquids only after midnight and up to two hours prior, which is now. I had a smidgen of black coffee which is really hard on my stomach so my caffeine level is very low.

Wednesday, July 21, 2010

Script writers wanted for my doctors please!

Yesterday was another day on the cancer bus from hell. (Before I bore you with my whining I will say, no they did not find any cancer so now you can read unstressed.) Monday was a day where teh result was 'no we didn't find anything but go back to your doctor if you have more pain.' Well, gee, I guess you ruled out the easy stuff. What about everything else? Never mind, I'll ignore it and suck it up until I decide its really painful and I need to move on.

Six months ago, I had what was supposed to be a baseline neck ultrasound as a follow up to my thyroid cancer. These were not standard when I last saw an endocrinologist sometime in the mid-1990s but one is recommended every five years now. So I was sent for one as a baseline so they could compare it to future ones. It was supposed to be clean but it wasn't. I was told the three choices of what they found were: recurrence (really they used that word), thyroid tissue, or a lymph node playing games. How wonderful did I feel? I didn't. It sucked to use that every so descriptive term. I talked to my endocrinologist three times about it and my primary care and my oncologist. The recommendation was it was too small to biopsy so a follow up ultrasound was recommended in six months. A hit from the cancer bus of maybe its back but you just need to sit and wait (how relaxing!!!).

So yesterday was the magic six month follow up. First I went to my meds therapist which was scheduled an hour before my ultrasound and I thought I might need a bit of hand holding before hand. She was running a tad late, like 30 minutes. I went up to the desk and asked finally. She didn't realize that she was off schedule. She thought she was on schedule. But I ended up with a five minute appointment. She blamed her schedule for only giving her 30 minutes for a new patient when she thought she had 60 minutes.

Then I went to my ultrasound, where they actually took me early so I had 40 minutes to kill before my endocrinologist appointment where I would get the results. I was stressed but walked around the cafeteria and couldn't find anything to nibble on so I sat down, read my book and drank most of my bottle of water. Then my endocrinologist was running late so I drank the rest of my water.

Eventually they called my name. The first thing they did was WEIGH me - but I just drank a bottle of water (and I asked the nurse to subtract 20 lbs from my weight but she said she couldn't). My blood pressure was also running a little bit high for me (125/80 and Monday it was 117/75) but since I was stressed we ignored that.

Finally, the doctor comes in and while she used the nice words, the messages I got were:

1. We don't know what is in your neck but its still there so we want to watch it for another six months so hang out on the cancer bus in the meantime. Gee thanks. It was supposed to be gone. But I am supposed to be thankful that it didn't grow (which would be really bad becuase that would spell cancer).

2. You're still fat. Actually she said my weight is constant for the past six months. What happened to the six pounds I lost? Can I blame the damn bottle of water I drank while waiting to be seen (or the piece of pizza I was forced to eat at lunch to be polite)?

So the script writers are wanted to say: You are losing weight at a nice consistent rate and the thing in your neck is gone and the pain in your abdomen is magically done. Does anyone want a job?

Tuesday, July 20, 2010

Hypochondria or not

Am I turning into a hypochondriac or not? I can't decide. If I go to the doctor for every ache and pain because of that niggling little 'what if', then when the doctor says 'its normal' I feel like I am turning into a hypochondriac. I will say when I do go to the doctor and say 'I had cancer twice' then they say 'with your medical history, blah, blah, blah, blah, we need to be sure' and send me off on the merry go round of tests and more doctors. It doesn't help that every time I go to the doctors I print off a new copy of my ever growing/ever changing list of medications I take regularly which just reinforces how much of a pill popper I have become.

Yesterday's doctor said I am normal (although my husband may dispute this fact) and any more pains should be reported to my PCP (lower right abdominal pain issues and we have ruled out my appendix and ovary as causes) for further testing. (But what if I choose just to ignore future abdominal pain as being normal or just things I need to deal with as a result of two abdominal surgeries?) I guess I was assuming she would find something so when she didn't I left feeling like Chicken Little - and a hypochondriac. Maybe I am sick of going from doctor to doctor and test/exam to test/exam. There is some sense of relief and reassurance when they do find something because (a) you are not crazy, there really was something wrong with you and (b) you don't have to live with the mystery of what the hell is that and you can move on to 'let's fix it stage'.

Anyway, so one doctor appointment out of the way. On to more fun and games but first I need to get my butt out of bed and get to work this morning. I will end with a quote from my husband:

'Its not paranoia if they really are out to get you so its not hypochondria if you really have lots of stuff wrong with you.' I don't know if this is reassuring but it is funny in a sick way.

Monday, July 19, 2010

I'm in avoidance mode

This week is not going to be a fun one. I have a doctor appointment today, tomorrow my meds therapist, a test, and another doctor appointment and Thursday a radiofrequency denervation on my right SI joint. I can't wait. I don't want to talk about my medical stuff until I know more about it so today I am in avoidance mode. It is the most mature way I can deal with this - letting my inner three year old out who can close her eyes and make it go away. Okay, its not mature, but it lets me cope better. I also have pills. And a busy schedule.

Yesterday we went sailing. The weather was awesome and I was up on deck and saw this big black thing in front of us... and then a fin appeared and it turned out it was a Minke whale. No I am not coordinated enough to get my camera out in time and get its picture, but it was very cool. Made my day.

Today I am going for a walk, washing dishes, and then going to my appointment before going to work. We are also in the middle of a battle to the death with a horde of fruit flies who have taken up residence in our kitchen. I threw out the bananas last week and moved the trash on the porch and our little apple cider vinegar and dish soap baits seem to be working. I cut up a bunch of fruit this morning with out any visitors appearing so perhaps we are winning the war.

In the meantime, my back hurts. It will be another hot day (ugh).

Sunday, July 18, 2010

I'm not changing my eating habits

Apparently fast food chains have 'voluntarily' reduced the amounts of fats in their foods. So why were they so high before hand? Since 1997 apparently they have reduced the amounts, so has anyone noticed their fries don't taste the same any more? I doubt it. So maybe they didn't need to be as high in the first place.

I can tell you that I find fast food french fries just as yummy as the next person but that doesn't mean I hit the drive through often. In fact, I think I went through a drive through about 10 or more years ago. When I used to ski, the ski trips often included a fast food breakfast of an egg mcmuffin on something equally easy to consume in the car. Now a days if I want fries, I either steal a few off my husband's plate or make oven fries at home. I have always preferred salads for lunch and haven't been on the bandwagon of a diet coke and an order of fries cancel each other out for a longtime.

Now my eating habits include such things as egg substitute, bananas, salad, home made dinner every night - no prepared food here. We don't even use canned soup any more (I think the last can of soup we own is now past its edible date). We even participate in CSA farm shares 7 months of the year to get the best locally grown organic vegetables. So fast food is still not in my future. I think I'm happier this way.

We are in the middle of a heat wave. I hate hot weather. When it hits 80 around here, I am melting. So the best substitute for hot weather is the ocean and we are going sailing for the day. Yesterday I was very unproductive and watched a lot of TV - but did get work done (so I wasn't a total slacker). Because of the heat, we had a big salad for dinner with all sorts of sides - beet salad, bean salad, chicken salad, whole wheat pasta salad with balsamic dressing, kale and purslane greens, around a big pile of lettuce with carrots, cucumber, and scallions on top. We have decided we will have salads for dinner for the next few nights so cooking is limited. It should cool off by Wednesday...

Saturday, July 17, 2010

Whoops, there it goes again

Avastin which was being used to treat breast cancer, as well as lung and other cancers, is now proven not to work for breast cancer. Helloooo!!! Tap, tap, tap on the microphone! Human beings not enrolled in clinical trials are not guinea pigs. If you enroll in a clinical trial you are agreeing to be a guinea pig for this portion of your treatment. But the general public does not agree to this just by filling a prescription. We are making some sort of assumption that the medication will do what its supposed to (and not have too many nasty side effects). So another little 'whoopsie' in the pharmaceutical world that has bigger effects.

If you were some one who was told take this and it will prevent breast cancer from coming back, you felt nice and warm and fuzzy that they were doing something and this little magic pill would protect you. But then 'whoopsie, sorry it doesn't work, you weren't protected'. Another unwanted jolt on the cancer roller coaster, thankyouverymuch (NOT!).

I am not on Avastin (which is just as well since it didn't work anyway) but I am sure there are millions who are. And I believe the sales from Avastin last year were reported to be in the billions - I'm not sure what portion of the sales were for breast cancer - but someone is getting rich on unsuspecting human guinea pigs.

Now today I am going to take it easy - yes, I promise I will. Yesterday I stupidly attempted to be a normal person and plan a full day - walk, work from home, meet a friend for lunch, a little shopping (and estate sales where I scored a turkey roasting pan for $2), work at the office and then home where I collapsed on the couch and convinced my husband to cook dinner. This morning my right SI joint is extremely painful so I am taking my drugs and taking it easy (which is simple to do when the pain pills put you in a daze). I will take a walk and pick up a prescription and a quick stop at the hardware store on the way home and then be amazingly unproductive for the rest of the day.

Friday, July 16, 2010

I am appalled

They finally got a cap on the damn well. I call this whole BP thing bad business. I admit I have not been following it day by day with total scrutiny but the more I learn the more appalled I become. My thoughts are this:

- They had no plan in place in case this type of disaster did happen. I'm not sure any oil company or government really does but they didn't and it happened to them.

- They had originally said sometime this summer (and I don't remember the dates or the time lines) the cap would be on the well. But coincidentally I believe their shareholders meeting or some other big event is somewhere around July 27 and they wanted to have the well capped by then so they could go in with good news.

- Many millions of British retirees have have pensions which are in plans that hold BP stock and now there is concern on the financial strain caused by the massive reduction in BP's value since this began which will cause other financial problems in the UK. (This is called 'dont put all your eggs in one basket').

- Finally, the most appalling BP action I have seen is that BP lobbied the British government to release the Lockerbie bomber on health conditions because he had cancer and only a few months to live. Well, now he is back in Libya and expected to live for ten years. And BP promoted the deal because they wanted to protect an off shore drilling agreement.

I call this all bad business and I am appalled. I think that its a prime example of big business gone bad. And the company should be penalized for this disaster and forced to pay for the clean up. And they should be reprimanded and fined for their role in the Lockerbie bomber release.

Well, if I blog about other stuff I can ignore my medical crap for a bit. I have a bunch of doctor appointments next week that don't make me all excited but I should get some news on some issues I am dealing with. And to cap it off, I am having a radiofrequency denervation (where they stick in needles and kill the nerves) again but this time on my right sacroliac joint which is still very painful after 2 cortisone injections. But that's next week. Today I am waiting for the damn electrician again, meeting a friend for lunch, and doing some work. I think I'll sneak out for my morning walk before the electrician arrives.

Thursday, July 15, 2010

No that little thought NEVER goes away

Once your doctor says that lovely word 'cancer' to you, that little thought of 'what if it comes back' NEVER goes away. It also doesn't help when you go to the doctor with a pain and they send you off for tests because they are thinking 'what if it came back' too.

If you are a normal person, you can have head aches. If you are a cancer person with headaches, you can have a brain MRI.

If you are a normal person, you can have weird pains in your gut. If you are a cancer person with pains, you get a CT scan or ultrasound.

If you are a normal person, you can get a few bruises and not remember how. If you are a cancer person with weird bruises, you get blood tests.

No, I am not dealing with any of these right now but this article points out, you always have the little niggling thought in the back of your brain, 'what if?' It doesn't go away. All I have to say when I break in a new doctor is 'I had cancer twice' and they say 'let's do tests'. Then I say 'how fun, I can't wait!' Sometimes there is a little debate - 'when was the last time you had this test?' Very rarely do they say they don't need the new test. This is why I have health insurance to pay for these tests. And a therapist (or two) to deal with the stress. But I'm still here. Someday when they come up with a magic cure for this, we will all feel better.

Today I have a bright pink pedicure for summer. Us cancer people can feel like crap and go for tests but we get to have good nails. Today I am going to work. How normal is that? Then I hope to fit in a walk.

Wednesday, July 14, 2010

Concepts I can live with

I have followed the transition of the hospital where I am treated from paper to electronic records. This is going on everywhere and promises to help patients and improve their care. A long time ago, you would check in and they would call the nurses station and tell them you were there. Then they added computers and the nurses would be notified electronically and would come out with a medical file to get you from the waiting room. Now they come out with a laptop (I wonder how often one gets dropped) to get you from the waiting room and bring you back to (the closet) where you will wait for your doctor. Everything is electronic. Well almost. I have been told that the next step in the transition is to have all patient notes be typed in electronically. And now they are working backwards from 2005 to put in all medical records. They currently have 2005 to present electronically.

I see the results in talking to my many doctors. They can review what everyone else has said about me (all nice I am sure) to learn about my oh-so-complicated medical history. It makes it easier on me. We can discuss my issues instead of have a question and answer session. They can easily review my past before I get there. Also, my medication list has somewhat reduced in importance as they have it online and it is up to date. Now they use it to confirm what I am taking. I think I can live with this. I'm just waiting for my medical records from 1981 to be updated.

Another concept I like is same day medical appointments.

Back when I was a child and doctors made house calls when you were really sick. (And milk was delivered in glass bottles magically out side the door. The knife sharpening man came by in his little truck. And the world was flat and black and white, but I digress). Then managed health care raised its ugly head and you needed referrals for everything. You waited months for an appointment and doctors really had no choice but to send you to the ER for stupid things because they couldn't get you in to see them. For many reasons, this has changed. Insurance companies are pressuring patients not to go to the ER unless they are very sick. I have been to the ER several times in recent years but I was always admitted so I never got hit with a big fee.

I have also seen the hospital where I am treated change and adapt as well. First they instituted a walk in clinic where you could see a doctor after a relatively short wait for any sort of minor ailment (you with the chest pains, go to the ER). The latest twist is now they tell you to call your regular doctor's office first to see if you can see your doctor or another in the same department that day. If not, then go to the walk in. I have done this and seen a doctor who knows my doctor. They also have my medical record on a laptop when I get there.

I think I can deal with these changes. I feel my care has improved and I don't wait weeks for an appointment for something that I have no longer have.

Well I have to motivate again this morning. We have an electrician coming to fix an electrical something and I need to get dressed before he shows up. Then I am meeting old friends for lunch at a fancy restaurant. Which should be fun.

Tuesday, July 13, 2010

Someone forgot to tell the sharks



For the theme song, click here.

Once again, we have great white shark sitings in New England and lots of references to Jaws. It was never a scary movie to me. The summer it was filmed on Martha's Vineyard, we were there. A shark isn't scary when you have seen it go by the restaurant window in the back of a truck. But it does make me think about what might be in the water. So around here we now have sharks. The oceanologists say don't worry they only want to eat the seals. But then they also tell you not to swim out too far. Hmmmm... I'll stick to wading until they go away. Someone forgot to tell the sharks it was only a movie.

Today I am attempting to get out of the house a little early. I have an appointment followed by work followed by another appointment. Some how I will squish in a walk too. Unless it is down pouring rain because I am a wimp.

Monday, July 12, 2010

A digression from cancer and other medical crap

I saw this story this weekend and think it is the coolest thing. Its a giant homing pigeon hidden inside a tortoise shell. Basically this family's pet tortoise escaped four years ago and just returned. Apparently they dig deep holes in the ground and wait for water to come out again. We had some drenching rain this weekend and, voila, he returned! So cool! And much more interesting to think about than pesky cancer crap. Here's a video too.

Yesterday there is a slight possibility I overdid things. I went for a walk. I made breakfast. I worked on my computer. We went to pick up bricks from someone who was giving them away. He wasn't there. We came home and Walter trimmed shrubbery. We went back and picked up bricks. I did some weeding. I dug up some day lilies and returned my over due library books. By then, my back hurt and I was exhausted. I came home and lay down for two hours before going out for dinner. Then I went to bed early. I feel better today. (Note my role in brick retrieval was to drive and then talk to the guy we were picking them up from. My role in shrubbery trimming was to pick up trimmings.)

Today I am going for a walk and then to a doctor appointment. I have to stop by the mall and figure out what happened to my phone. Everyone says they can't hear me on it and I cant figure out how to adjust the setting. Last week, I let my nephew play with the ring tones on it and now I have the audio problem. I think I have another errand to run and if I can remember it, I'll take care of it as well.

Sunday, July 11, 2010

Another article that makes me feel all warm and fuzzy

In case you missed it, yet another drug company is under fire for sloppy clinical trials about one of their drugs. In this case its Glaxo Smith Kline and the drug is Avandia. Now I don't take Avandia and don't have diabetes. But the issue is clearly pointed out as sloppy data analysis in clinical trials. Tell me this is the only case ever of sloppy data keeping and I'll be happy. But we all know there probably are many other cases of this. People are human, they have deadlines and rush to meet them and take short cuts. Its called life

This is a clear example of why clinical trials need to be supervised closely, analyzed deeply, and new drugs need to be closely watched. There are many very sick people out there who find hope each time a new drug is made available, either through clinical trial or by prescription, but many new medications are very powerful and we can't assume they will only work on the one part of your body that is causing your problems. For example, a new pain drug you take orally has to go through your digestive system. On its way to solving your pain, it could also take a toll on your liver or stomach or other body parts. At any rate there is a lesson to be learned here. In the meantime, I don't really feel all warm and fuzzy about the drugs I take and their side effects.

In the meantime, I have decided there is a new word for my body 'dilapidated'. But enough about me. Yesterday I went for a walk with my husband and we noticed how low the water levels were in the conservation land. We have not had a rain really in a month. Then yesterday we got 2.5" of rain (which completely refilled my rain barrel I had accidentally left on last week and emptied) and there was a bit of flooding around here. I watched some amazing video of flooding at Fenway park - at least the seats are now clean. I digress. Today I will go back out to the conservation land and see what the impact of the one storm was.

A quote for the day from my cousin: Keep your dreams big and your worries small.

Saturday, July 10, 2010

Thoughts on blogging and news and privacy

I started blogging because I had a nasty medical diagnosis - breast cancer - but now I don't just blog about cancer, I blog about all my other medical ailments (and there are just a few), my interactions with the medical world (which are all too frequent), my opinions on just about anything I read, and what ever I feel like writing about. Its my blog and I can.

I find blogging to be therapeutic in that I can write about something and get it off my chest (so to speak). There is no English teacher who is going to tell me I can't write (a frequent experience in high school). Its just me and spell check,a spell check that often doesn't understand medical terms and leaves me a red squiggly line as a reminder that he thinks I am wrong.

Blogging also allows me to be in control, in some small way, of my medical issues. I am the one in control here and decide what I write about and when. Sometimes I am not ready to talk about things and still need to think about what the impact of the latest news really means. Or that the next step is something I need to digest some more.

Privacy on the internet is somewhat of an oxymoron. But I do what I feel comfortable with. If you know me, you know my whole name and email. If you don't know me you can leave a comment. Many of the comments I get are spam (so much for having a fan club) but I leave the majority up if only for the humor aspect. If you know me you can also find me on facebook (the internet's greatest time suck).

Enough on all that. Today is Saturday. It hasn't rained for a month. Today we were going to meet some friends at an outside festival and the weather forecast is for rain. Of course. But I will drag my husband out for a morning walk and stop at the pet store (which is conveniently 2 blocks from here) and get two cases of cat food. I do have some work I need to do today because I procrastinated this week. But now I need my coffee.

Friday, July 9, 2010

Some news I can use

Here's some news I can use 'Living Well Could Quash Cancerous Tumors'. Now it was a mouse test and the mice were giving scientifically induced cancers and then some were given an enriched mouse life which means toys, play mates, hiding places, and exercise wheels. So there are a lot of points of contention here:

- mice vs. people - would people react the same? Lots of things never get past the mouse test but this isn't an FDA treatment being tested but a lifestyle change that people can do on their own.
- scientifically induced vs. naturally occurring cancer - would the cancers react the same? Cancers in different organs respond differently to different treatments
- a rich life for a mouse vs. a rich life for a person - there is a big difference here. But if it is defined as getting out a doing things as opposed to sitting at home and feeling like crap by yourself vs. going out and seeing friends, getting exercise, doing things you enjoy (crafts, hobbies, etc), I'm all for it.

Actually this is the biggest point to me. With cancer, I see no reason to take time off from life and sit at home and feel sorry for yourself or just sit around and do nothing. There is no reason, even during treatment, that I don't think the patient should stop doing things. A friend's husband is in treatment for colon cancer, and they keep spending as much time at their summer place as they can. Why not? They would anyway - and its on a lake so its much more fun than suburbia. As long as he is around for chemo and follow ups, why not have fun?

Having been through cancer crap twice now, I think if it ever recurs, I will create a plan of action of what things I am going to do to have fun (between surgery, nausea, and chemo). Why not? I guess my plan is to keep on living my life and having fun and not letting the pesky cancer crap interfere.

Anyway, as I continue my attempts to have a rich life, today I am off to work again and my Friday afternoon will be so much fun as I have a meeting scheduled to start at 1. I am sure it will go for a couple of hours. I hate Friday afternoon meetings. Last night we slept on the futon again. Aside from waking up in the middle of the night with a leg cramp and at 4 am with back pain it was just fine. My leg still hurts and i moved up stairs to our comfy bed and actually got back to sleep for an hour or so. But I am in just ducky shape for the day. Perhaps I'll be whiny too. But it is Friday and we actually have some fun plans for the weekend.

Thursday, July 8, 2010

How am I supposed to keep up?

As a relatively average American (well maybe slightly different than average due to my medical crap), how I am supposed to keep up with all the latest medical news. This morning alone I found.

1. Glucosamine is no help for lower back pain.
2. Fish oil may help prevent breast cancer.
3. Diet cola drains calcium in women

I found these in just a couple of minutes. But this is representative of the amount of medical news found daily. Some of it is unfounded - for example the fish oil study is not yet proven and based on a single study and needs more research. We get bombarded by medical news and those of us to whom it might apply feel we have to read it and ask 'does it apply to me?'. The sheer amount news is difficult to keep up with. So we resort to the path of least resistance and start ignoring the news.

So is the sheer volume of news forcing the average American to rely on sound bites instead of reading in depth? Is the volume of news now available from so many sources causing its own demise? In this internet age, news is available all the time, from all over the world, from thousands of sources. What happened to reading the daily newspaper and watching the evening news for half and hour and being able to keep up? I have enough problems keeping up with my calendar much less all the news. I will ignore it for the rest of the day.

Today my back is protesting sleeping in air conditioned comfort. We have slept for the past two nights in the first floor room on the futon where the window AC unit is. At 430 this morning, I got up and moved up stairs to the comfortably cool bedroom with the comfy memory foam mattress topper but it is too late. This will be a bad back pain day. It will make working for 8 hours doubly enjoyable.

Wednesday, July 7, 2010

I have a love/hate relationship with articles on change

I think that change needs to be viewed as a good thing but sometimes it can be difficult to accept. So this doctor wants to rethink how older cancer patients are treated. Well, it sounds reasonable and probably represents some kind of progress medically and a way of reducing costs while increasing quality of life.

But (of course there is a But here), what if you received the older course of treatment? What do you think now? In this case, do you feel you were over treated and put through unnecessary stress and costs? This is just one example. What if they changed the protocols for the chemo therapy you had? Do you feel over or under treated? I think the chemo regimen I underwent three years ago has since been tweaked and is similar but not the same. I am okay with that. But what if it had been completely thrown out and redone? How comfortable would I be then?

The road to hell (and a nervous breakdown) is paved with regrets and what ifs. I think that we can't allow ourselves to wonder what if we had a different course of treatment?

The current standard follow up for thyroid cancer includes full body scans and thyroid ultrasounds every few years. This was not the case back when I last saw an endocrinologist so when I went back to an endocrinologist this year she sent me for an ultrasound where I received less than stellar results. If I had kept my mouth shut about seeing an endocrinologist, would I feel better now but could it have had long term implications?

I think I need to keep thinking that change is a good thing and will help me in the long run.

We are in the middle of a heat wave here. Monday we went sailing to hide from the heat - the whole family except my brother in law. Yesterday we went to the beach in the morning - my brother and three kids. Last night, we installed the air conditioner (with lots of accompanied swearing - move out of the way damn it) and slept in a downstairs room in air conditioned comfort. (The cat slept on my pillow in front of the AC.) This will be repeated until the weather cools.

I am about to go for a walk before it gets too hot. Then I will do some work in my 'summer office' - the finished basement room which is nice and cool. We live outside Boston where many people do not have AC simply because usually at night the temperature rarely stays about 70 so its good sleeping weather. In this heat wave, it is in the low 80's when we get up and reached 100 yesterday. So basically I will go live in the cave of our basement today.

Tuesday, July 6, 2010

Dear Tommy (and all you other snake oil salesmen)

Yesterday I posted on how I was doing and I received this comment below:

'Cancer Formula (curing people)

The cancer formula is a 100% completele holistic formula and all ingredients are FDA approved. When put in the proper ratios the holistic products and microbes will eat away the cancer. We create the formula based on the specific individual and his/her labs. As well I send a follow up formula that is holistic as well that actually acts as a cleansing agent to the body to take dead cells out of all organs and the body. I have attached a few of the formulas with 1-2 missing microbes on each as to not tell 100% of what the formula is. This is all 100% FDA approved . The formula comes with a 100% money back guarantee (as we sign contracts and money goes into an attorney escrow based on this), as well if any person we ever treat ever has a recurring cancer cell , we will treat him/her for life for the one time cost. When we treat any person. We need the most recent labs, and then follow up labs when they are through being treated. We keep these to show credibility in our product as well as the initial lab tells us how to make the formula.

Kind Regards

Tommy'


My reply to Tommy and all the other snake oil salesmen out there:

Dear Sir/Madam/Idiot:

While I appreciate the fact that you actually found my blog and possibly even read it before posting on a completely unrelated topic to my post, there is no way I would actually even consider replying to you. I realize you did provide a full name, phone number and email to make it easy for me to contact you, I do not believe you are offering any kind of cure. Let's start with the fact that you did not include any kind of information as to what the cure consists of other than a few vague hints. Will I need to swallow whole goldfish, drink exotic herbs, or whatever?

A holistic approach to scrub microbes from my body sounds like either the movie 'Fantastic Voyage' will be recreated in my body and run around with a little tool set or scrubbing bubbles will be let loose inside of me.

Also, you should take a better look at your English writing skills. Completely ends in a 'y' not an 'e' and you made several other grammatical errors. This is why Microsoft has invented spell check. Please consider using it.

If I did contact you, would you ask me to send you money, or my social security number, or is it a poorly guided attempt to raise the hopes of someone in cancer treatment who would grasp at any straws offered them to be cured? Stealing money from a person who is very ill is lower than low.

Finally, any cancer cure that I would consider will require some FDA approval or recognition by doctors who will tell me about it in an appointment at a medical facility. So I wish you good luck in your efforts to

Sincerely,

Caroline (who is not that stupid after all)

Monday, July 5, 2010

A good Monday morning

Why is it a good Monday morning? Because its a holiday and we all have the day off. Actually my brother is visiting and my nephew slept here last night after we had a big family dinner/cookout in our back yard. Today we are all going sailing. More family quality time. It will be interesting on how my back does sailing. Last year it didn't like boats. Think about it, if you are sitting on a surface that is moving around (a/k/a a boat on the water), you use your back to stabilize your body. My back didn't like that last year. But this year I'll be prepared and bring drugs to help.

Otherwise, I'm doing okay these days. I have an ultrasound in a few weeks that I am ignoring until it happens. My doctor appointments have settled down to one every few weeks which is much more manageable than one or more every week. But I do have to go for a blood test soon. Doctors are like vampires - they want your blood. And other fluids. And pictures (xrays or scans). But as long as you end up with good news afterwards, I am happy to let them keep doing their tests.

No I don't have much to say today. I am going to get up and take a shower and do all my damn exercises. Then I will drag my husband and nephew out for a morning walk. Perhaps my brother will get over here for that little excursion as well. Then we need to get organized to go to the boat. First I have to find the list of what food I said I would bring since there is no hope I can remember that without my list.

Sunday, July 4, 2010

The missing link in cancer treatment

There are thousands of clinical trials ongoing in the US and around the world each year but why do so few Americans participate in them? One school of thought is that it is the oncologists who are not suggesting the trials to their patients as they are unaware of them. I think that this is an area where there is room for growth. If oncologists are unaware of currently ongoing clinical trials they will not suggest them simply because they have no knowledge.

Another area which I could help in enrolling in trials is to make the process of finding a suitable trial made more user friendly. I was lucky that before my diagnosis I worked briefly for a company which provided software for managing the data that was captured in a clinical trial so I had spent some time, while healthy and not stressed over a cancer diagnosis, learning about the process. I understood the different phases and how to find out about new and ongoing trials. But if you aren't a medical professional decoding the lists available on line at www.clinicaltrials.gov can be a daunting task.

Finally finding a fitting clinical trial is made even more difficult by needing to fit in the narrow guidelines of a trial. I was actually offered two clinical trials by my oncologist but then was told I didn't fit the criteria. One of them had requirements along the lines of stage II breast cancer with no lymph node involvement within six weeks of lumpectomy and had not yet begun treatment. I had a tiny lymph node involvement that eliminated me from that one. The other one I think I was eliminated from because I had already had one cancer.

I am treated at a hospital with an affiliation with a medical school and who conducts a fair number of clinical trials just outside Boston which is a medical hub. I can imagine that in less urban areas or ones with fewer medical schools and teaching hospitals, there would be very few local clinical trials and less focus on enrolling patients.

How can the system be changed to enroll more patients in these valuable tools? Educate our oncologists and make the system more user friendly so patients can find the trials on their own? This is another area maybe where health care reform could integrate better with clinical trials.

Saturday, July 3, 2010

Genetic testing: the tarot cards/palm readings of the 21st century

In the past, when people wanted to learn what might be in their future, they had their tea leaves, palms, crystal ball, tarot cards read. Now we can do one better and skip the hocus pocus by going straight to science with genetic testing. Give a few cells and get back a scientific yes or no of if you have that gene. The latest round of genetic testing publicly discussed is the longevity gene which joins dozens of others previously announced. If you have the longevity gene, you are predisposed to live to be 100... Well a 77% chance of that. You could still get hit by a bus tomorrow. Or if you chain smoke, you probably are lessening your odds as lifestyle factors still have an impact.

But also if you do not have the gene, it does not mean you won't live to be 100. You still could. The same could be said for any other genetic testing. If you have a specific gene, it does not mean that defines what will happen to you any more than what someone with a crystal ball said a generation ago. It simply means you are predisposed to that condition that was found to be determined by that gene. Our bodies have many more genes that could predispose us for the same or other conditions. Genetic testing still has a long way to go.

Once you find you have a specific gene, what do you do then? Just because you know you have a genetic predisposition for something, how do you use the knowledge to help you? Take the BRCA gene for example. Women with either the BRCA1 or BRCA2 gene have a higher predisposition to get breast and ovarian cancers. It doesn't mean they will get them, it means they are at higher risk of getting them. Many women who test positive for one of the two BRCA genes will choose to undergo prophylactic oopharectomies or mastectomies to remove the risk. They opt to have surgery just in case. This is for their piece of mind.

I'm not sure I want to know my future. I think I prefer taking each day as it comes. My grandmother lived to be 96 so is longevity in my future? Maybe. But I've had cancer twice does that tilt the scales the other way? Maybe I'll go get my palm read if I really ever want to know.

Friday, July 2, 2010

An article I had to read: 'What's causing your back pain"

I am glad they can tell me what is causing my back pain through ESP. Actually the title is a misnomer there is a new tool for doctors, the EMG, to diagnose causes of back pain. They should have titled it something along the lines of 'A New Tool for Diagnosing Back Pain". I have been told that surgery is not an option for me but perhaps something could be learned through an EMG... I will ask my pain doctor at my next office visit.

I do have a basic idea of what is causing my back pain - degenerating disks which cause nerve pain in all sorts of areas in my back. The goal is to follow the new areas of pain around my back and treat them and then go on to the next area with more treatment. For the rest of my life. I am so excited - another medical procedure involving needles every couple of months - I can't wait. Actually I am looking forward to the next adventure because it will relieve some pain in my lower back.

Apparently other people have different kind of back pain. There's will go away at some point. And they can do things like stretch and move and help it out. If I do things like stretch and move, I cause more pain. So maybe the article isn't for me but I do like the cited article on how to describe pain.

This is a lesson I learned from my PCP a few years ago, it doesn't help her if I go in and say 'I have a pain'. She wants me to tell me the story of the pain. It hurts like this when I do this/eat/stretch, etc. That is what is very helpful in diagnosing something. 'Doctor I get a sharp pain in my eye every time I drink cocoa." Reply "Take the spoon out of the cocoa". When going to your doctor, if you write down the answers to these ten questions about your pain issues, you might be surprised how much more a doctor can do for you. You just made their job so much easier.

I also like the comments on opiod addiction. I take enough pain meds and other meds regularly. Some of them I will be on for life, other ones are for break through pain and other conditions. I am concerned about drug dependency and withdrawal issues if I ever come off them. Several of my meds say do not start or stop with approval from your physician due to withdrawal effects.

But now I digress. Its time for a little breakfast and my morning pain pills before a trip to the beach with my husband.

Thursday, July 1, 2010

Ha! I was right all along

Isn't it nice when studies confirm what you were already doing? Here it is: 'Cancer Survivors are Urged to Exercise'. As I may have muttered about a few times, I go for a daily walk. I did go for my daily walk during treatment. I try not to skip a day but sometimes it happens. Currently I claim I walk six days a week - because I have missed a few days here and there due to work schedules and meetings. Anyway, I get out there and walk. I do it for flab prevention and destressing. It is also nice to go to the doctor and have them always say one good thing - 'your blood pressure is nice and low' - in the middle of cancer talk... Its just nice to say 'ha! I was right!'

Now there is another article I was reading that confused me. I admit to being easily confused at time but there is one kind of article that always confuses me. These are the ones on checking for skin cancers. I look at the pictures and look at my skin. And look at the pictures and look at my skin. And look at the pictures and look at my skin. And give up and make a mental note to ask my doctor the next time I see her and usually forget (because I have no brain). And if I do remember, she'll ask me when I last saw a dermatologist and send me over to see one... But that will be months from now and I know this so I'll go back to looking at the pictures and looking at my skin and being confused.

But I digress. What am I doing today? I am working from home. I do have work to do and will attempt to get to it but I am also meeting my husband for lunch and some shopping. Even before that I am going for a walk which I plan on doing as soon as I have a little more coffee and do my damn exercises. I have noticed that a couple of days ago my arm was not feeling too great. I put it down to being stupid and carrying something. But then I realized I had skipped my arm exercises a few times and voila, my arm was aching and sore and feeling puffy. I have learned that I can control this stupid lymphedema with exercises... So maybe they aren't that bad.

Also today: back pain, check! Neck pain, check!