Dr Google or what

So I have written about googlechondria recently. We are all victims of it. Our mind takes over our fingers and we google away until we are sure we have stage IV brain cancer or the bubonic plague. Then we go to our doctor and they look at our symptoms, listen to our complaints (whines), and give us a diagnosis and treatment plan.

But what about if there needs to be a little more? What if the patient self educates and asks a panel of experts for their thoughts?

Take a look at www.cancergrace.org. I know the video is long - 10 minutes - but at the end it directs you to CancerGrace where you can ask a panel of experts about your cancer questions. I think this is very cool.

My problem is then to remember about this site so that if (when) I have cancer questions again, I can go ask them there. That may be beyond my chemo brain's ability to remember anything.

Medical (mis)adventures

Yesterday I had such a wonderful day I needed chocolate ice cream at the end of it. Why was it such a wonderful day you ask? Well I am signed up for more medical (mis)adventures. I am so (un)excited.

I had an appointment with my back pain doctor, also known as the doctor who prescribes the good drugs. He told me that I looked in good shape, and didn't comment on my high blood pressure reading that concerned the nurses. He told me that I have pain from my facet joints (the little joints along the side of your spine), my right sacroiliac joint (the long joint along the side of your tail bone next to your hip bone), and from greater tronchanteric bursitis in my left hip. All the previous treatments/injections have worn off and I need to start over again.

He insisted on squeezing me in on Wednesday (as in tomorrow) to give me an injection under fluoroscope into my left hip. I am not sure why he didn't want me to wait but I'm happy to have some pain relief coming. But then they gave me the instructions for the procedure which say: "The doctor will numb your skin with a small needle, which will sting a bit. It is important to hold still and let us know if we are causing you discomfort. Next the doctor using an x-ray machine (fluoroscopy) to guide the needle into the correct spot. Local anesthetic and steroid are then injected through the needle and the needle is removed." The parts that I am so (not) looking forward to are the sting a bit and causing discomfort, and the big needle in my hip.Or all of the above.

Next after that we will schedule a repeat of the radiofrequency denervation in my right SI joint. That is in the top three of the all time most painful medical adventures I have had. I asked if it is likely to be as bad as last time and he said most likely. But it is the only way to relieve the pain (which is similar to that of an ice pick into your back). I can't wait.

Finally, we will repeat the facet block injections. These are no fun. They give you three injections on each side of your spine - twice. The first with anesthetic and the second with steroid. Oh, and even though you are sedated they hurt - each one. I really can't wait. But that will probably not be for a couple of months.

I just have to get through today first. I finally broke down and called my primary care doctor yesterday about my shoulder. I bruised it in late July and it got better for a while. This weekend I ended up icing it several times. My concern is that it is my lymphedema shoulder. If it wasn't, I would probably suck it up and give it until October when I have an appointment to see my PCP. I am not entirely sure what they can do because I have range of motion and don't think anything is really damaged - only bruised. But the lymphedema aspect is more concerning.

Three days, three doctor appointments/medical adventures. What a way to start a week.

Well its sort of important

No change that, its very important. Do you know what your thyroid does? I think most people would say it does something with your endocrine system. (And what does your endocrine system do? Can you answer that part?) It actually does a lot more. There is a simplified version attached here but basically it controls a lot of your body. Its your largest endocrine gland.

Wikipedia says "The thyroid gland controls how quickly the body uses energy, makes proteins, and controls how sensitive the body should be to other hormones." Or think of it this way it "stimulates body oxygen and energy consumption, thereby increasing the basal metabolic rate." So basically it runs your body.

So I don't have one. I haven't had one for thirty years. I can tell you with low thyroid your fingernails are brittle, your feel lethargic, and can't remember anything. If you are too much thyroid (take two pills in one day instead of one because you forgot you already took one - did that ONCE) and you feel like you are on a marathon and can't get off. Your heart pounds and your head is going a mile a minute.

I am in a constant struggle to monitor my thyroid levels - too high, too low, my doctors tweak it and then I feel the results. Right now I think they are too low, my doctor thinks they are fine. In the meantime, I can blame my lack of brain cells on chemo brain but maybe I can blame thyroid stuff too.

On that uninspired note, I get to go round up all the doctor phone numbers I need to call today and go to work on a Monday. I hate working on Mondays and Fridays. One benefit to my schedule now, is I usually work from home on Mondays and Fridays but that's not happening this week. I have to work both Monday and Friday this week.

Fighting this aging business

I am attempting to fight this aging business. Sometimes I feel like I am winning - I actually have muscles right now from six months of going to the gym, I don't color my hair and have very few gray ones so far (and am happy to gloat about this fact), my wrinkles are minimal, and I don't think I look my age yet.

But then if you look at my medical file, you would think I was twice my age (which is a number that is none of your business). Before digital medical records came into play I had one of those thick files which could be used as a door stop. Now my doctors have to look through MANY appointment notes to find out what is going on. Sometimes I think they get lost in my medical file the way I sometimes get lost in Google.

I was reading an article about heart attacks waiting to happen and can say with some level of certainty that will not be me. But then I didn't expect cancer either.

Getting old isn't for sissies. Well I'm not a sissy by any stretch of the imagination (unless there are crawly things in the bathtub or bears outside the tent while camping or the doctor says 'you might feel a pinch') and I don't plan on wimping out either.

I'm not sure I am aging gracefully but I plan on having fun while doing so. What's life if you aren't having fun? This aging business just interferes from time to time.

One of those days

This is one of those days. I can tell already. I woke up at 335am and couldn't get back to sleep. My husband did. The cat did. I didn't. I finally got up around 5 and am tired but can't sleep. But I did run the dishwasher and clean the kitchen.

I am not blogging about the impending visit by Irene. It is being over-hyped by the media and there are plenty of other people talking about death and destruction as a result.

I am not blogging about the fact that my tennis elbow seems to have returned and is very aggravating as a result. I will see how it goes but may need to go back to PT. Grrr...

I am not blogging about the fact that I have yet another skin rash - something I never got before chemo and now get frequently. I have a dermatologist appointment in two weeks and will suck it up until then.

I am not blogging about lymphedema related issues since I injured my shoulder and my arm has been living in a puffy state since. There is nothing they can do at the lymphedema clinic anyway. I could do their stupid exercises again - if I could remember then.

I am definitely not blogging about the 2012 presidential election because it is too far in the future and frankly I am sick of all the candidates and their stupid posturing already.

I am blogging about being in a crappy mood because I am tired, itchy, and achy already. Maybe I'll take a nap.

Again I am not inspired

I am not feeling inspired this morning. Maybe because I have attempted to be a normal person for the past few days by working full days and then doing things in the evening other than sitting like a blob in front of the TV with my laptop. That cat likes me better when I spend a lot of time doing that.

I was so tired yesterday I wanted to go home from work and take a nap. Well, I got to lie down for half an hour and then go out to dinner with my family. Then when we got home my back hurt and I couldn't fall asleep so I took a pill and did sleep and feel somewhat better today. But of course something has to hurt - my tennis elbow is acting up so I am typing with a stupid wrist brace which leads to frustration and typos.

I did want to sleep late today but we are having a home energy inspection where our house will be checked for any way we can have energy savings. We already have new windows and use CFL bulbs but we have no idea what we have for insulation and our water heater is well aged and due to go shortly. A little professional advice might be helpful here. But I will have to take lots of notes so my little chemo brain doesn't have to remember everything. And I will NOT sign up for any expensive work to be done without consulting with my husband first. The good side is if we do any of the work they want, we get a 75% rebate up to $2000 if the work is done this year. Not that we have any spare cash because of vacations and kitchen upgrades. We'll just have to see what they say.

My level of inspiration is also lowered by the fact that my back hurts (what a surprise), I have yet another stupid skin rash (a souvenir of chemo), and there is a little bitty storm headed our way which will ruin all weekend plans of going to the beach. Maybe I should just take a nap and forget about everything but I have work to do meeting a friend for a walk, and then acupuncture for my elbow.

Post-Traumatic Growth is complicated

This is a too much work. I'm sorry but I couldn't/wouldn't do it. They make it too complicated. What am I talking about? All these complicated steps for post-traumatic growth. Yes, when life gives you lemons, you need to learn to make lemonade (vodka optional). But let's make it easier please. And maybe the steps should be a bit smaller. I think the authors are being a little optimistic myself and thinking its a one size fits all thing when its really a one size doesn't even fit most, just a few..

This is what they say and my opinions (because otherwise my blog would be more boring than it already is).

1. Become more optimistic - Sure, I'll just whip some optimism out of my back pocket and put on my rose colored glasses. You just told me I have cancer and I am not quite there yet. I have to get through those five stages of denial, anger (I forget the next ones) and end up at acceptance first. Then I'll gradually phase into the optimism level but I need some time first. And a gratitude journal? I tried that one. It has one date on it and one very brief entry and then I gave up. Sorry that doesn't work for me.

2. Increase mental agility - what is mental agility? I thought it was the ability to do crossword puzzles in pen. They think its 'the ability to see situations fully, accurately and from multiple perspectives'. I call that big picture thinking. I can work on that.

3. Seek self awareness - another journal. Forget it. Two journals (and a blog) to keep up? Not happening either. I know I act like an idiot sometimes and over react but I am not going to try to see what kind of patterns I act in or how I consistently act in the face of bad things. I have plenty of other things to do than to self analyze.

4. Self-regulate - in other words don't let yourself 'make a Himalaya out of a mountain'. (I kind of like that comparison.) So if you consistently cringe every time you get in your car to go to see your oncologist, stop it. That's (not) easy. No don't stop going to your oncologist, but try to make it less stressful - take a friend with you? Reward yourself with something after - like the lollipop you got after shots at the pediatrician. A little something as a reward.

5. Focus on strengths - Let me see, you are in cancer treatment, you have no hair, feel fat, tired, and nauseous all at once, and the idea of changing the tv station is challenging. Yep, got a lot of strengths going there. But I'm alive. That's one.

6. Develop better connections - I did this. I found all sorts of cancer support and cancer friends on line. I still have them and I still appreciate the support I received there.

Overall my take is you really have to get through those five steps (that I can't remember all of) and get to that acceptance stage and work on growing your resilience. When faced with trauma you need to cope first and then gain resilience. It doesn't happen over night but it can be done.

Also, don't think you can do it alone. You may want to find some support somewhere - on line, in person, in whatever form works for you. Getting to the growth stage from the stress stage isn't easy but it can be done. Take some time, if you can't/aren't coping, try some help. Part of this is figuring out what will work for you. And just because someone else loves their gratitude journal, doesn't mean you should run out and write one for yourself and think it will solve your problems.

Deep breath, one step at a time, is what gets you through to the other side for growth.

Reasons to enjoy flabbiness

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It turns out that being thin is only one factor that contributes to healthiness. And just because you are thin, doesn't mean you are healthy. No matter what you weigh, the important thing is that if you exercise regularly - 30 minutes/day - and eat lots of fruits and vegetables.

Today I am on the healthy bandwagon. I have a breakfast meeting and then I will go to the gym, go to two more meetings, and stop at the farmer's market on my way home. I did not exercise yesterday nor did I eat right. I had nachos and a glass of wine for dinner while I caught up with an old friend. But I had a salad for lunch so some how those should cancel the other out.

Yes I am trying to lose weight but aging, post chemo, post hysterectomy it gets harder and harder. But the scale is going in the right direction (but seems to have gotten stuck at one number for a while now which is why I had a salad for lunch yesterday). I do go to the gym three times a week and one day a week I try to go for a long walk with a friend.

I'm aggravated

Or maybe I am irritated. I'm not sure. It may be a case of reused 'not-so-new' news. Last night I was watching the evening news and there was a 'Medical Minute' on that said that there are issues with taking Aromatase Inhibitors after breast cancer. I didn't catch the whole thing and wanted to go see it again online and I CAN'T FIND IT!

The topic was something about the benefits vs. the toxicity of the AIs and their prevention of a recurrence vs. Tamoxifen. I am all confused. I am on an AI. If its toxic I want to know. If its not helping me I would like to know. I don't go back to my oncologist for a bit and would like to educate myself in the meantime to figure this one out.

The media has the habit of rehashing 'not-so-new' news when they need to so this may not even be something that hasn't been discussed 10,000 times before. But I would like a little confirmation here.

I will be either aggravated or irritated or both in the meantime.

Don't call me Mrs.

I have noticed in recent years, maybe its because I got married or maybe its because I have been going to the doctor so often, that they call me Mrs R at the doctor's offices. After 6 1/2 years of marriage (well really 5 years because it took me that long to get around to changing my name) I am Mrs R I am very rarely called Mrs R except at the doctor's office - by the person who greets me, by the nurse who calls me and by my doctor. And every single one of them mangles the pronunciation. (One 'e' can be pronounced as if it was 'ee'. The name isn't misspelled, you are saying it wrong - but that's another blog post.)

I was going to ask my doctor's office to start using my first name instead. I might even respond to it a bit faster - Mrs R sometimes goes in one ear and out the other (how long do you have to be married before you stop feeling like you are using an alias?)

This is a barrier between me and my primary care doctor that I feel she is putting up by calling me Mrs. R. I think I would prefer she call me Caroline - its my name. I also want to develop a long term relationship with this doctor. My last one was kind of 'eeh'. I never really warmed up to her. After my breast cancer diagnosis, I was upset and stopped by her office and left her a note - and never heard back. That was pretty much the last straw. I don't think I saw her after that anyway - just her nurse practitioner.

My new primary care, I actually have had four appointments with her so far. And I have another appointment in October - she told me I am complicated and wants to keep tabs on me. But in the longer term I want a doctor who knows me, not just as a patient she sees once a year but as a patient with some (not so minor) health issues who is trying not to become a pill popping hypochondriac but seems to develop an ongoing list of medical issues.

I hope she reads this article about breaking down the barriers between doctors and patients. I do know a few things about her. She is young - this means she will outlive me. In fact she only joined the hospital in 2010 and did her internship and residency at a local teaching hospital. That part I got from the hospital website. But then I found out from nurses in another department that her father also is a doctor at the same hospital and they remember when she used to come by as a little girl. I like knowing a little bit more about my doctor.

The nurses seem to like her as well which is very important. If you want a good doctor, ask the nurses. The nurses wont tell you bad things about a doctor but they will tell you good things about a doctor. You can fill in the blanks. So on my next visit I will ask my doctor to call me Caroline...

Doctors as human beings

Sometimes us patients may not believe it but our doctors are human beings. Well most of the time, some times they seem to be sadists as they perform 'medical adventures' on semi-sedated patients who should only feel a 'pinch' or 'some pressure'. Actually I do think they are caring human beings but sometimes their practice of medicine on my body isn't very fun from my point of view.

As the patient, I think I should be the most important person in the room. There is no space for a doctor's ego, or anyone else's ego. But once you are sedated the doctor is in charge. They like to listen to music while they carve out little sections of your body. But I want to make a request - can I choose the music? I am going to be more relaxed if I listen to the music that I like - even if you have knocked me out.

This morning I found a blog by a doctor that isn't dry as dust and boring and ramble on about their research, medical breakthroughs, and papers they have written. It is even funner than a placebo and even has a disclaimer:

'This blog pro­vides gen­eral infor­ma­tion and dis­cus­sion about med­i­cine, health and related sub­jects. The words and other con­tent pro­vided in this blog, and in any linked mate­ri­als, are not intended and should not be con­strued as med­ical advice. If the reader or any other per­son has a med­ical con­cern, he or she should con­sult with an appropriately-licensed physi­cian or other health care worker.'

As always consult your own physician. But I think he is funny. He's a doctor with a sense of humor - even if he does need a disclaimer.

Go read more at http://zdoggmd.com/

PS I have no idea who he is but think he is funny and like his perspective.

I wouldn't try this

I think the whole concept of stem cells and stem cell transplants is pretty cool and could open the door to many medical advances. However, I would not try with Governor Perry did. He went had back surgery in July and a very controversial stem cell transplant. He had fat cells taken from his body by liposuction and they were put back into his spine and blood stream.

The controversy is that stem cells are done with other cells - not fat cells. It is not known if fat cells will turn into a good kind of cells or cause a blood clot or turn into cancer cells. In addition the cells were grown in a petri dish where their sterility could have been compromised.

There are additional concerns because he is a powerful and influential person. Will his risky behavior influence others to have similar risky behaviors? I mean this goes back to the 'if all your friends jumped off a cliff would you' argument that you had with your parents at one time in your life.

My opinion is that I would prefer to have medical procedures that are proven and safe. He did this because he has a bad back. Um, I have a bad back and I'm not rushing to try anything like this anytime soon. I only have one spine and one blood stream. If either one of those was compromised, that would be a VERY bad thing. He may be a risk taker, but I am not. (I am not getting into the political discussion if he was president would he be a risk taker that could jeopardize the country.)

I am a cat person

And how is that relevant to cancer you ask? Now it is proven that dogs can smell cancer. I had heard something about this earlier this year and boo hooed it but now more research has come out and dogs really can smell cancer. This was even brought up in 'The Big C' - Showtime's cancer comedy that I couldn't get through (and that's another blog post).

But I am a cat person. Actually I used to be scared of dogs but since cancer is a bit scarier I am better at dealing with dogs now. But I am clearly a cat person. Growing up, we always had a cat. We occasionally took care of a neighbor's dog when they were away. My grandparents had ill behaved poodles who were allowed to clean the china dinner plates under the table after we were done eating. When there were guests they had to do their dish washing in the pantry. (My proper grandmother saw nothing wrong with the dogs cleaning the 'good china' and this behavior meant they were good for eating the vegetables I didn't want.)

I do think that cats are sensitive to when people are sick as well. When I was stressing and have surgery twice and beginning chemo, our cat developed a weird behavior where he literally pulled all the fur off his stomach and irritated the skin to the point that we took him to the vet. She wasn't sure but said he was clearly stressed about something and gave him a shot which for some reason stopped this. I think he realized how stressed his people were.

Have you ever had a bad cold and your cat just wants to snuggle? They understand. Maybe they don't specifically smell cancer but they are sympathetic to ailments.

I think there needs to be more research into the benefits of having a cat. Perhaps they can smell other things we don't know about.

Would you sue your doctor?

I don't think I would sue anyone unless I really felt they had done something wrong - like operated on the wrong body part. After I read this article I felt like I am the only one who wouldn't. These numbers amaze me 7.4% of all doctors face a lawsuit EACH year and 1.6% of all doctors face a payment EACH year. And we wonder why doctors charge so much because they have to pay so much malpractice insurance.

I have never understood the American way of suing people. I have a friend who told me she wanted to sue her neighbor because they had cut down the trees on their property that were shading her property or something like that. She was mad that they didn't tell her first. Hello, they don't have to tell you what they want to do on their property. They could to be nicer about things but they don't have to so why are you taking them to court? Someone else told me about the case where her neighbor is being sued by another neighbor for cutting the branches off the tree growing on her property and hangs over their driveway. They can do that legally. They could have asked first but they didn't have to so why are you suing?

I actually do know of someone who did sue their doctor. When their child was born one of the doctors failed to properly monitor the child's breathing and didn't act when needed to prevent harm to the child. As a result the child will spend its life in a special needs nursing home and has a life expectancy of less than 20 years. The results of the lawsuit pay for care needed for the child. I can see this as a case where suing was the right way.

Doctors are practicing medicine and the human body contains a lot of mysteries. Tests do not necessarily expose everything that is found when surgery begins. I had a bad day of skiing ten years or so ago. An MRI showed a meniscus tear and a suspicious ACL. Surprise, surprise, in surgery they found that I actually had a second older meniscus tear that had healed itself and my ACL was partially torn.

Yes sometimes accidents, stupidity, drug reactions, and all sorts of other blips happen in life. But they have so many double checks now that cases of operating on the wrong thing are not as common as they were. And medicine is not exact. Everyone is a little bit different. Sometimes scars heal weird, or a secondary infection happens or a medication doesn't work. Its not perfect so you can't expect perfection. You can expect a certain level of improved health but that isn't always guaranteed either.

The hope now is to move to what they call apology law where doctors and patients can hash things out with attorneys and a third attorney for a mediator to keep things out of court but get away from the emotions of a doctor's office. I am all for anything which happens out of a court room.

Its time to work on delivery again

There are manufacturing shortages periodically for just about everything. They are worse now that most manufacturers are using the 'just in time' model where nothing sits on their shelves for any length of time. Then the problem becomes if anything does not show up as planned, anything breaks down, or an act of God occurs (think tornado, flood, earthquake, etc). Look at what happened to the Japanese car makers when their parts sources were hit by the earthquake earlier this year.

We accept that something might be out of stock for a bit, we skip it or buy something different in the meantime but then it eventually comes in back in stock. Life goes on, no problem.

But what if the problem is for something significant like a medication - maybe even a chemo treatment? The impact becomes a bit more significant, especially for the patients. In fact, I think if I was told my chemo drugs were not available, I would be a bit concerned.

This is when delivery of the message is very important. Delivery is often very important in soothing feelings and reducing emotional impact but it is often ignored. A woman in this article was concerned that her chemo regimen was disturbed when her doctor called and said 'don't come in for chemo, we don't have the drugs'. Ahem, that would upset anyone who was counting on their life saving treatment. (Maybe there is a bit of media spin in this article as well to make it a bit more tragic - a comment from my inner cynic.)

Let's work on the delivery here. If you have a substitute, can you use it? What if they said, we have to reschedule you for three days from now when we will have something else to treat you then? Most medical professionals learn this kind of thing and its called 'bedside manner'. Most of them are probably nice people where it comes naturally.

I guess my point is let's not make mountains out of mole hills here. How can a patient's anxieties be alleviated by giving them information and options? If a cancer drug is out of stock, lets see how this problem can be solved locally. The manufacturer is probably working on the problem at their end. What matters here is the patient's health and mental well being. Work on the delivery so the impact on the patient's stress level is minimized.

Cancer secrets

I didn't know cancer has secrets but apparently it does and no one knows what they are (which is why they are called secrets). What is now important is that we know that cancer does have secrets - things we do not yet understand.

In this article (which is very technical and discusses thinks like lincRNA, microRNA and psuedogenes so it requires more than one cup of coffee to completely decipher and leaves me at the end of reading it with the secrets to me start at what the heck are those) discusses some of the progress in deciphering the secrets of cancer and how they are now focusing on 2% of the genome. (Its lots of science and biology so read it if you are ready.)

I think there are lots of secrets involved in cancer. Start with why did I get it? Why can't you make it go away for good? Why do you have to make me so sick in chemo to make me better? And let's end with why can't I get my life back after cancer?

Once they answer those questions and process the important 2%of the genome, maybe they'll have a cure.

Decisions, decisions, decisions

Yesterday's post generated a few comments on Facebook so I decided that I wanted to write more about decision making in medical treatment. You have an ailment, you go to the doctor, and they tell you what they recommend. It is your choice to follow it. You are a mature adult and you can decide what you want to do to your body.

However it is your obligation to make a good decision. A good decision is defined as one that is based on a rational decision making process. You can ask your doctor what the side effects would be or the pain level of the 'medical adventure' or whatever else you want to know. You can get a second opinion. Or you can do some research on your own - online at credible websites or through other medical professionals or even people who have gone through the procedure.

You should also put some thought into the big picture. Yesterday's example was that of a woman who is refusing chemo because she didn't want to lose her hair. This was a potentially life saving treatment being refused because of a minor side effect. But if you are having chest pains and the doctor says you need a bypass or you will not survive through any more stresses on your heart and you choose not to follow their advice. You need to realize that this could kill you.

I know numerous people who have chosen to skip traditional Western medical treatment and have gone with alternative medicine, modalities such as acupuncture or reiki, or diet modification. They are happy with their decisions and credit them with saving their lives.

Yes it is your body and your choice as to what you want to do. I guess my point is that you make your decisions as you want. If you don't change your behavior in someway - through medical or other treatment - your health isn't going to improve. A decision is an action. An action causes change. An inaction does not result in change. But a bad decision that is done without thought to the consequences is just as bad as indecision or inaction.

Missing the big picture

A cancer friend was telling me the other day about a friend of her's who was just diagnosed with breast cancer and was refusing chemo - because she didn't want to lose her hair. I think she is missing the big picture. She can make a trade here - lose your hair and keep your life. Multiple doctors have recommended chemo to her and she still says no.

I also think she is in that stage called 'denial'. She needs to move on to the anger, bargaining, depression and then acceptance stages. Its not an easy transition and it certainly doesn't happen over night. My friend was going to talk to her some more and find out about her cancer stage and other factors in her diagnosis.

I have thought about this for a few days and think there is some fault of the doctors here (or maybe she just isn't hearing what they say). Part of a doctor's job is to communicate to the patient what are the risks and benefits of a course of treatment.

If a doctor is recommending a potentially life saving treatment and the patient is refusing it, part of the discussion should be what happens if you don't do it.

My oncologist sat down with me and using a white board started going through the risk reduction benefits of each stage of my treatment - chemo, radiation, and Tamoxifen/Femara. Maybe I pushed him more to explain it to me but he did and I could see the benefit. I am sure I blogged about this back them but that would mean looking something up and I'm too tired to do that this morning.

Looking back I think that I was still in the denial/anger/bargaining stages and trying to make decisions. Actually I was being cleverly led down the path of least resistance to go through all treatments. They made it easy for me to say yes and hard to say no. Maybe I had the benefit of having been through cancer before (a different cancer with a different course of treatment) that I was quicker to pick up the big picture.

Its not about wigs, hair loss, scars, lymphedema, insomnia, nausea, constipation, neuropathy, and all those other lovely side effects/results of cancer treatment. Its about being around to live and enjoy life.

Just because its in one report doesn't mean it right

I apologize in advance for writing what has got to be one of my most uninspired blog posts ever. Please feel free to skip it and come back another day.

Back when I was writing my college thesis (on the evolution of the verb 'to be' in Romance languages if you must know), the first article I found turned out to be an inaccurate and actually was completely wrong. It was written in the 19th century and countered all other information - and was wrong. I was all excited to read it once and then I found everything else was contrary. It provided me with a good lesson of just because you read it once, doesn't mean it right.

Medical research is becoming more often recalled. What this means is just because you read it in a medical study doesn't mean its true - this is why they always say 'more studies are needed'.

If a researcher has a big study and writes up a report that is publicized they get their money, their faculty chair, and a bunch of other perks. There has been a 15 fold increase in the number of retracted studies in the last ten years. It should be noted that retractions are not done because of falsified data, I think that is the exception and not the rule. It can be due to contaminated samples, data can't be repeated, or some sort of misconduct. This does not mean the research is wrong it just means that they need to verify it.

What this means, is if you see a breakthrough medical study that will cure you, your doctor is probably right in telling you that patience is needed. If your doctor isn't keeping up with the latest medical news, they make be making decisions based on recalled research.

The recommendations are to search online libraries to confirm the research and to check Retraction Watch. Or in other words 'dont believe what you read'.

Another must see movie

I now have two cancer movies I want to see 'Dying to Do Letterman' and '50/50'.
Dying to Do Letterman is a documentary and is out selectively in theaters. They are trying to raise money to show it nationally. I blogged about it recently but here I am blathering on about it again. I also just found out they are going to have a book out in October so I may have to settle for that.


I saw the trailer for '50/50' a couple of months ago. Now it is now being screened at some theater in LA and since I live on the East coast I'll have to wait until its released on Sept 30. Originally another blogger wrote about it and said it was his life with his room mate... Its not about him but a true to life version of life with cancer. And it had a very good review in Cure Magazine - which is another reason for wanting to see it. (If you have cancer and don't read Cure Magazine, you should.)

I also want to see 'The Help' and did finally see the last Harry Potter movie.

Another hope for a cure

There was a small (and I mean really small - three person) study on a gene therapy which uses the patient's own blood to cure their leukemia. It was aptly written about by a reporter with the last name Nano...

Okay, its progress. It sounds very promising. I think it could be a sign of the future - taking your own blood and turning it into T cells and then it gets beyond me. But please, its only on THREE people and they still don't have any long term results. As the article states, they need to look at the condition of the patients in one or two years.

This is not a cure, it is another in a long series of potential breakthroughs. The problem is all these breakthroughs is that we hear about them now but we have to wait for years to find out if they will work for the general population with the ailment - like all of us with a lovely cancer diagnosis in our background. While the doctors cited in this article are 'could hardly contain his enthusiasm' and found the study 'pretty remarkable' but its only THREE. And they want to test this in leukemia related cancers as well as ovarian, pancreatic, brain, and prostate cancers. That still leaves a lot of other cancers with out a solution.

Maybe I am a tad cynical but that is allowed. So I'll just sit here as the impatient patient and see if this one leads to any more results - in another five to ten years.

Music and cancer

Music to soothe the anxiety and pain levels of cancer patients sounds like a nice idea except I won't be singing anytime soon. You don't want me to sing. Trust me. I only sing in the car when no one is there and I can play the music loud enough to drown out the sound of my voice. It would be painful for anything else. You also don't want me to try to remember who wrote or sings a specific song - I am always wrong. I do know Francis Scott Key wrote the Star Spangled Banner but anything else, I am probably wrong.

All these medical researchers are scratching their heads about why music could help cancer patients with pain and moods. I didn't go to medical school, have no advanced degrees, and can't sing at all but I think I know why - its simply a distraction from sitting there thinking about pain and cancer. If you listen to music, you can let your mind wander and (silently - if its me) sing along, and distract yourself from the reality of your life.

When I was in treatment the new oncology center had a big waiting room full of cancer people and their friends and family waiting for the blood counts to be checked so they could get an infusion. Very little eye contact - too many bald heads, bad wigs, and obvious scarves (do I look as sick as everyone else?), lots of reading bad magazines, whispered conversations, and longing looks at the door to the nurses stations and at the ladies with the snack cart. It was not a cheery atmosphere to say the least. There was no background noise, just the perky receptionists greeting people, and the nurses calling names for the next patients.

I got a big surprise after treatment, they installed a big screen TV and rearranged the chairs and now everyone watches TV and talks to each other, in a slightly cheerier fashion. It is a distraction from reality. The Ellen Show is a good choice and popular among the patients. CNN and Fox News were definite no-nos. Who wants to look at the real world when we need a distraction?

Music makes perfect sense to me. I finally reached the 1990's and got an MP3 player - my last personal music system was a Sony Walkman with a cassette tape in 1978 - and I find it gets me through my work outs and other times when a distraction is required.

Cancer swallows you whole and any kind of distraction can be welcome. Something to think about besides surgery, treatment, pain, medical adventures, stress, and chemotherapy - I am all for it.

The incurable ailment

Yes there is more than one incurable ailment. Cancer has no cure, but neither does optimism. I try to be optimistic. Really, (stop snickering at me) I am an optimist. I admit when diagnosed with cancer it slipped for a time. But a therapist and a support group and taking some time to cope has returned me to my optimistic state.

(My friends who are reading this should stop snickering, saying 'yeah, right' and pay attention here.) Last week while on a road trip/vacation with my husband he was muttering about the economy once again, convinced that we are going to financial hell in a hand basket. I informed him that he was a complete pessimist - which he denied and blamed the politicians. I responded by saying he is a half-empty guy and I am more of a half-full girl. He muttered in response.

Then I started thinking - which we all know is a bad thing but that is what happens when you drive a car for four hours and are trying to pretend your back isn't hurting while your husband reads his book. I decided that these days I am fairly optimistic.

Yes my health is what we can define as 'less than stellar' to put it mildly but I am still here. I may not be working to my full potential but I am enjoying my work/life balance and don't feel I'll be out on the street at retirement - and perhaps the house will be paid off by then. My husband and I are happy. The cat has returned from his vacation and actually seems to have missed us. Financially we are doing okay (but if you have a spare million or two that you wouldn't miss you can feel free to send it my way).

My health seems to be my big issue but I haven't had a doctor appointment for a couple weeks and don't have one for another few weeks. I am trying to get into see my back pain doctor but that doesn't seem to be a reality so it will be the end of the month before that happens. September will bring a round of doctors - oncologists, knee doctor, dermatologist, and I can't remember what else. And I am still being an optimist. Maybe because I have already heard the worst I can from a doctor (cancer, incurable back pain, etc) and because I am on antidepressants (which could be contributing).

However I am happy to be considered an optimist at this point. Life gave me lemons for a while and I made some lemonade (and considered adding vodka for a while). Optimism is underrated and, fortunately, incurable.

Another reason to exercise

Perhaps I was actually doing something right. Before and during treatment, and even for a while after, I went for a daily walk. During treatment, I would drag my body outdoors to get some fresh air and exercise for a 30-45 minute walk. The only days I didn't go for a walk was when I was hospitalized. I may have been walking slower than before diagnosis, but I was moving.

I was always encouraged to do so by the doctors and nurses. Other people in treatment would look at me like I grew two heads - you mean you didn't stay home and take a nap? At the time I was doing it because it was part of my daily routine to go for a walk and cancer wasn't going to upset my routines - even if it screwed up the rest of my life. In addition, it helped with that lovely treatment side effect - constipation - that they never told you about.

Now, perhaps it looks like I was doing something right after all - they (the omnipresent) are recommending that exercise be part of cancer treatment. Patients should no longer be told to take it easy. Of course there is disagreement about how much benefit there is - whether it is a 40% risk reduction for a recurrence for breast cancer people or less - but they all agree exercise is good.

I admit I no longer go for a daily walk. The reason is a daily walk wasn't reducing my personal flabbiness level enough. Last winter I took a Pink Program exercise class offered at the local Y for the ginormous price of free for breast cancer people. Then I decided I needed more and joined a gym run by physical therapists where I get a personalized exercise program that takes into account all my personal health issues and limitations, is populated with an average age of 70, and oxygen tanks, walkers, and wheelchairs abound. When I go there three times a week, I do 40 minutes of cardio, followed by two sets of 15 of six exercises on machines, followed by more abuse with weights, etc and leave a sweating ball of exhausting after about 1.25 hours. My personal flabbiness level is being impacted by this so I am happy.

And now it looks like for once in my life I am doing something right. Today, we are back from a vacation where we managed to eat vast quantities of food with my husband's relatives and I am going to the gym after I face the loads of laundry that have piled up.

Things that confuse me

There are things in this world that confuse me. Maybe my mind can't quite comprehend everything and other people understand everything, but I walk around confused at times.

- Why do celebrities and sports figures get to 'over come' cancer and return to their normal lives and the rest of the world get labeled as survivors and victims?

- This brings me to my next level of confusion - why do people with cancer have to be survivors and people who don't make it become victims? Um, we are people and patients and those of us who don't make it are not victims.

- Why is there still so much unknown about medicine and cancer? I mean these have been known for generations but there is so much that are mysteries. Have we been researching in the wrong direction? Or have researchers been given the wrong instructions? It is my understanding that researchers follow very strict guidelines - they are told 'find out this'. Are we not telling them to find a cure for cancer and the common cold?

- Medical breakthroughs always seem to have some sort of caveat when published in the media. I mean obviously a cure for the common cold is not going to cure a broken finger. But they always say 'further tests are needed' or 'this is still in the development stages but looks like a promising lead'? We need more breakthroughs that say 'this will save 1,000,000's each year.

- Why does the cure sometimes have to be worse than the disease? Ask anyone who has been through chemo about this one.

That's enough confusion for one morning. I think I need coffee.

Statistics

You get cancer and you have to learn about statistics. I took a statistics class in college and then another one at Harvard Summer School. I did pretty well in both - well obviously or I wouldn't have taken the second one if I failed the first one.

But then I never could figure out this risk reduction business and cancer. It is so confusing. But here someone explained it in a way my little tiny brain can understand. Too bad I won't really remember it because of chemo brain and will have to go back and reread it all the time.

Another one of those thingies

Its a thingy. Actually its a benign breast lump. I have had two. One when I was 22 and one at the end of chemo. Both times, 'with my medical history they had to be sure' and they were taken out. Once they were gone, I never gave them much thought. I mean, benign and removed, what more is there to think?

Well, now I find out that there are two kinds of them - simple which are nothing and complex which can indicate a higher risk of getting breast cancer. Now the problem is I have no idea if I had simple or complex ones. I think it will be relatively easy to get the results of the biopsy from the later one but not from the one in 1984. So what do I do now? Pretend it didn't happen and has no bearing on my current and future health? Decide that even if it was complex and I have already had breast cancer it doesn't really matter?

It is very frustrating when later medical advances allow them to tell us more about previous medical tests, procedures, and other fun medical 'adventures'. There should be a way to take your old test results and reanalyze them easily to figure out their impact. Frustrating.

In the meantime they are just thingies that we can ignore so they don't stress us out.

Living a double life

Some people who know me think I have a bad back, tennis elbow, shoulder problems, bad knees, am mildly accident prone, and have lots of doctor appointments. Other people who know me know that I have had cancer, bad back, tennis elbow, lymphedema shoulder/arm, bad knees, am mildly accident prone, and have a lot of doctor appointments...

Am I leading a double life in that some people who know me don't know about the little bitty cancer issues? I really don't think so. I just think its none of their business. Do you know the entire medical history of everyone you know? I doubt it. Its none of your business either.

So why do I find myself telling people about my cancer issues? I wonder about this. But it often comes to my job working at a cancer support center, it sometimes becomes pertinent and I tell people about my cancer. But I do feel weird about it. Afterwards I often think 'why did I do that?'. But once its out there, you can unsay it. Maybe I don't care as much any more. Maybe its because I work where it is relevant.

Something else they don't know

Last winter I started having horrible problems with leg and foot cramps. I mean I would get them in both legs at the same time while sleeping - two Charley Horses at once. Talk about pain. Then for a while, if I moved my feet the wrong way I would get horrible foot cramps. I still get them but not as much.

I asked the physical therapist and she said Gatorade and stretching are a good combination to get rid of them. However the theory of potassium lack and dehydration as causes of leg cramps is not true - no research has proven dehydration or lack of potassium are causes. Meaning if you eat a banana, it will make your leg cramps go away. They are considered a real cause of sleep deprivation and get more common as you age.

They can be caused by medications and some more serious conditions such as "akathisia, myelopathy, peripheral neuropathy and disorders of calcium imbalance". Other diseases including diabetes can cause them as well. But there is a group of benign, idiopathic leg cramps that they have no idea what causes them and they will make it difficult for you to sleep. With my luck I think that's what I have. And they don't really know what causes them. Research has not proven that dehydration or low potassium have anything to do with them.

Although they have been better they are not gone. The best thing I do for them is stretch a lot when I go to the gym. This week I am not going to the gym, so I will look forward to benign, idiopathic, sleep wrecking leg cramps.

Treatment options

In treating any kind of ailment, you always seem to start with a doctor. You hope the treatment will work but sometimes its not the treatment that is the problem, it could be your doctor. If you are suffering and in pain in any way, or you don't like them, or they don't listen to you, or they make you wait too long, it may be its time for a change.

If its a specialist you are dealing with you may want to get a second opinion. If its your primary care, it may be time to find another one. I have a new primary care doctor and I feel I am finally getting attention.

My last primary care doctor sent me for a mammogram one year and it was the 'bad' one. I was really upset and left her a note at her office. I never heard from her. That was the beginning of the end.

There are lots of other reasons to get a new primary care. I am happier now with my new doctor and I feel like I am getting better care.

A failure to communicate - and why does the patient suffer?

This story was told to me about a friend of a friend. This woman was suffering from back pain so she went to her doctor. The doctor said we can help you by putting rods in your back. Her surgery was scheduled and she showed up on the appointed day. The anesthesiologist asked about her medications and found she was using Fentanyl patches for pain. He said he couldn't sedate her until she was off the patches for two weeks. Her surgery was cancelled and rescheduled for two weeks later.

She showed up Fentanyl patch free for the second surgery, was on the gurney being prepped and someone asked about her EKG. She hadn't had an EKG in two years so they postponed the surgery again so she could have one. At her EKG they found an irregularity which required treatment and was compared to her two year old EKG which also showed the irregularity that required treatment that she was never told about.

Now this poor woman is busy with all sorts of cardiac fun and games and her back still hurts. At how many points do we have a failure to communicate? A lot. I feel the biggest gaps were in the doctor's offices. The doctor who ordered the EKG should have made sure the results were given to her with recommendations to follow up with a cardiologist. The doctor who ordered the back surgery should have had his office go through all the pre-surgical requirements with the woman so should would have known not to use the Fentanyl patches and to order an pre-surgical EKG.

A little blame goes to the patient in this case as well. If she had an EKG two years ago, she should have asked her doctor for the results if she never got them. She is not to blame for not getting pre-surgical information from the other doctors' offices.

Talking and communicating are big parts of medical care. You need to talk to your doctors - pretend they don't talk to each other like temper mental teenagers and that they don't look at any other doctor's notes in your file. When they send you for a procedure (a/k/a medical adventure) you should ask is there any preparation for it and what about the results.

"What we have here is a failure to communicate." A great movie quote but also unfortunately all too common.