Recommendations vs. Medical Standards vs Patient Preferences

How often do you get your teeth cleaned? Every six months, just like the ADA reccomends of course. Unless you have bad teeth like me and go every three months (and I hate having my teeth cleaned). There are guidelines that tell us all sorts of things - get the oil changed on your car, get a flu shot, get a colonoscopy, and get a mammogram.

We usually follow these guidelines because they give us structure and a sense of how often we need to do these things. We listen to them because they are all in the 'preventive' category - they help make us more likely to live longer and healthier. We may not understand all the reasons why but we obey like lemmings, until they change and we get confused if we don't understand why.

But what if 'those people' who make these decisions about what to do when took into account what the patients preferred?

In 2006, the US Preventive Services Task Force (aka 'Them') issued a statement that women over 50 should get mammograms every two years, unless their medical history dictated otherwise, instead of every year. And nobody thought to ask the patients what they wanted.

Until a recent study announced at the annual meeting of the  Radiological Society of North America), which stated that 70% of women prefer annual mammograms. The reasons for concern over annual mammograms is for potential harms - false positives, cancers that would never become problematic, etc. The women asked were not as concerned about false positives or other harms than expected. This percentage could also be residual from women who were just used to annual mammograms and didn't understand why this would change.

If medicine is about the patient, and not about guidelines, insurance companies, and doctors, more change needs to happen. Personally I think if standards are changed, patient education needs to happen.

After a mammogram, the patient should be given written information on why they do not need to come back for two years and this is  why - what are the dangers, aka potential harms. Same thing after a colonoscopy or flu shot, etc. The mechanic who does an oil change puts a sticker on your car window to remind you when to come back. That is the only way to involve the patients and educate them as to why the change is happening.

Friendships

This has come up time and again but for some reason I have seen it more often in my Facebook feed in the last few weeks. Friendships - they come and go. We make friends and we lose friends. Some friends we lose when we change and move on - maybe we used to work together, live next door to each other, go to school together, or some other commonality which held us together but doesn't any more.

Other times we opt to lose our friends when they appear to have changed. The point is from your perception you don't really want them as a friend any more. For instance, if you had a friend and they did something unethical/illegal wouldn't you be uncomfortable with their friendship? I don't know anyone who did anything illegal but can think of a several instances where two different friends made me very uncomfortable with their ethical choices.

Or what if you think your friend is developing emotional issues and they refuse to take care of themselves, to take any advice on it, and do not consider themselves to have any emotional problems. An example is that if you had a friend who became a hoarder, what would you do? What can you do? Hoarding is characteristic which is telling us something more is going on with them emotionally. They need help but if they are in denial over their situation, what can you do?

What if you think your friend is just using you? I had a friend and, I kid you not, for a couple of years she used to call me to see how the traffic was before she drove home from work. Her rationale was that I was home and could look it up on the TV for her. I finally resorted to telling her, for several months, that I have no idea, the TV isn't on, before she finally figured this out. Um, you have the internet don't you?

Then there are the people who are chronically late, for everything. All the time. They can't get anywhere on time. Being late happens to everyone - a flat tire, etc - but not every single time. And late by an hour or more. It is incredibly rude to be late. It says 'I am way more important than anyone else so everyone can just wait for me'. Did you ever try to get a group of people together for lunch at 12 and have one call at 5 til to say they just woke up and will be there in an hour? (I just wonder how people like that keep their jobs because if they can't do anything on time, can they ever meet a work deadline?)

Finally, another part of friendships is what if you have changed? That is certainly the case with me. I have changed significantly over the last decade. My health has been greatly altered and I no longer have the same coping skills I did before. I don't have the patience or the physical ability to wait for people. Nor can I cope with anyone else's emotional issues. I have plenty of my own these days. It upsets me that I don't have the physical and emotional bandwidth I used to and I work on coping with that.

I also realize that I can no longer do a lot of the things I used to do - like hike, go out to dinner, stay up late, etc - so the friends I used to see at those events I no longer do see. But I would be happy to see them if things worked out and I was physically able to attend.

As my life has changed my friends have changed. It can be sad to lose friends but sometimes its necessary to lose them.

Number Nine

Surgery number nine was yesterday. I thought the surgeon was going to clean out my knee arthroscopically so it would no longer catch and lock up. That was a good idea.

Everything went as planned - including me being STARVING by the time we got there at 1pm after not eating since the night before - until I woke up after surgery. That's when I found out the bad news.

Well its a good news/bad news situation. The good news is that the surgeon fixed my knee so it will no longer catch - which is amazingly painful when it happens. The bad news is the repair is more complicated than the original plan. Instead of a clean out, he repaired my meniscus. This surgery is not usually done on people over 25 but I think since the tear was where it was repair was better than removal. However, recovery is four to five MONTHS instead of four to five WEEKS. A 'minor' difference.

And I have a giant brace I need to keep on all the time except when showering (and I can't shower until tomorrow). This brace is so big it doesn't tighten up around my leg except near my knee. And, and, and, and, and, and,.....

This isn't the best picture but I took it lying in bed with my leg out straight in front of me. You will notice the TED stocking I am supposed to wear every day as well. Its still drying from when I washed it last night. It might take a few more hours to dry.

I will say this is the first surgery that I woke up to a 'surprise' since Number One in 1981 where it turned out it wasn't a 'goiter' and was 'thyroid cancer'. But that doesn't matter. This just sucks.

However, there is plenty of ice cream in my freezer. My husband is home for the next four days straight to take care of me. I can weight bear because of the stupid ass brace and my cane so I can get around pretty easily on the one floor of our house. The cat even slept on my knee last night (as he likes too) which was okay because of the brace so he didn't squish me.

Can you hear me being grumpy already? I have to double check when I can drive because its my right knee. And the pain level is fine. I already have pain meds and can take them when I want but I only needed one last night and am okay so far today. I think I need to get more ice to put on my knee. Crabbiness may prevail for the next few days.

Health Insurance

I am very concerned about the potential changes in the national health insurance program that is in place. In principle I like the idea of national health insurance so that patient's are not victims of their health insurance company or are tied to jobs they hate just to keep their health insurance.

I also like the idea of no pre-existing condition clauses, young adults can stay on their parents insurance longer, and no lifetime insurance caps. And I want all of these items to stay. I also want every American to be able to get health insurance if they want.

I would like to see changes that help reduce costs of insurance and not to have huge premium increases allowable. I would like to see changes where medication costs are reduced as they are one of the single largest factors causing such high increases.

What I dislike about the proposed changes are the following:

• I feel that the changes are being rushed by the new administration. I have heard that the changes will happen within two weeks and it will be comparable plan. I just can't see that happening so fast as it impacts millions of people. No changes will work unless it is properly planned so that patients (the public) are not left hanging without insurance.
• I believe it is just partisanship that is causing the rush to make the changes. People did not like the former president so they want to get rid of his signature legislation as fast as they can.

We are a bunch of innocent patients here who can't afford to be without health insurance. I am lucky enough to have health insurance through my husband but I know many people who are depend on the Affordable Care Act for theirs.

So I am asking all the politicians to be careful about making abrupt changes with millions of people's health insurance.

Health Care Crap

So we have a new president elect (who shall remain nameless). My biggest problem with him is that he claims he will dismantle the Affordable Care Act. This is a serious issue. I do not give a rat's a$$ about political partisanship or how Hillary is a liar or whatever label you want to put on anyone. I only care about health care for those of us sick people.

What if health insurance was taken away from all of us chronically sick people? That would be murder essentially for many people who can't afford their health insurance and are seriously ill. And if they don't die, they would be bankrupt.

This is a serious problem. I am not sure how health insurance could be taken away from someone once they get it. But if the insurance was cut back so it wasn't really providing the needed coverage, that is different.

I see this as a fine line that needs to be watched carefully. I can understand if he wants to reorganize it and change how it is funded, but not how he could change the actual coverage and financial benefits it provides.

Hmmmm.... I will be watching.

I Am Done Making Lifestyle Changes

When I was 19 and diagnosed with thyroid cancer, after treatment the doctors told me to stay healthy, take care of myself, eat right and get plenty of rest. Um, great advice. I was in college so it did not exactly fit my lifestyle.

But I did put some deep thought into how I was going to live my life. Having cancer sucks (if you want to disagree with that, please let me know). It was a big wrench in my life. A huge elephant in the room. And one I was not too sure how to approach (there was no social support for cancer people in 1981). However, I decided cancer was not going screw up my life.

I made the decision that I would try to live a healthy life style. I was going to make sure I took care of myself. But I wasn't going to let cancer interfere with my life.

But then cancer decided to show up again nearly 26 years later. I did make some lifestyle changes during chemo. I did change our eating habits to include more fruits and vegetables. I made sure any processed foods were removed from our diet, not that there were that many. I finally quit smoking.

Now, nine years later, I think I am done with altering my lifestyle. I know my primary care doctor is going to tell me to eat more vegetables and stuff like that. But I am done with that.

I enjoy a glass of wine and am not going to stop drinking. I try to get plenty of sleep. I mostly eat right (but some how a bag of potato chips fell into my grocery cart last week). I try to eat plenty of fruits and vegetables. (Potato chips are vegetables aren't they?)

I have enough going on that I am not going to make any more lifestyle changes. I have so may issues right now with my health. I think I have made enough changes. The only way I am making more lifestyle changes if they will cure cancer and get rid of all my other ailments.

Warning: A Cynical Post

They, the infamous, all-knowing 'them', say that after a cancer diagnosis, in one year you will reach your 'new normal'. As I have said before, the whole new normal thing is bogus and not worth seeking because it doesn't exist.

And its not after a year either. That year concept is wrong. First of all, your treatment may not end in a year. You are forever changed and even if your body returns to something resembling your previous body, your mind has been irreparably scarred. At every doctor appointment or test or scan for the rest of your life there is that evil little voice that says 'what if....'. It also shows up in the middle of the night when you can't sleep, or it wakes you up.

Also there are the people, like me, who find that after that cancer diagnosis, your body continues to rebel and send you down the never ending medical spiral of more ailments. While in chemo, in addition to growing a benign breast tumor, my gall bladder developed gall stones (a completely separate ailment) which led to surgery. Other people I know have developed cardio issues and other treatment side effects. And the women who chose reconstruction face additional surgeries. Never mind all the people who suffer from significant side effects from treatment and surgeries.

I am lying in bed this morning, waiting to take the (damn) cats to the (damn) vet. They are sleeping peacefully next to me but I know at the first sign of the dreaded carriers, I will be faced with the game of 'chase' with me chasing them so I can stuff them in their carriers. Full carriers are hard for me to pick up and carry to the car. When I arrive at the vet it will take two trips to get them inside. But they need their physicals and shots and exams (which they will hate). When we come home they will hate me. And my back will be killing me.

And I hate it that my body no longer allows me to do all the basic things in life that I used to be able to do. I am frustrated with my pudgy body that makes that is difficult to lose weight.

Yesterday I finally finished the latest request for information for my SS Disability application which includes asking me about how my ailments have changed my life from before when I was sort of healthy to after when I can only when I can watch everything I used to like or that used to be easy for me that are now a struggle. I really do not need reminders of the things that I can no longer do.

Pause. Deep breath.

Sometimes my inner cynical b*tch comes through and needs to vent. Maybe this is why I need therapy to cope.

Rethinking things

So my life has been in a bit of a transition for the past few months. We decided to move, then we started packing, house hunting, more packing, having a cold for weeks, the holidays, moving, losing (and then finding) the cat, unpacking, and unpacking.

For the first time I got up this morning and went into the kitchen and started puttering around. I moved the coffee maker to where it should be (on the counter under the cabinet full of coffee cups) instead of where we had first plonked it on the counter the day we moved in. I then started looking for things in the cabinets - to find the salt (which we do not have) - and rearranging things some more. Then I even did some tidying. Now I want to do some more puttering and cleaning. So I feel settled. Finally, and it feels good.

I have had some friends over so far. I have even reconnected with some from whom I used to live further away. Some were content to sit and chat. Some wanted to help unpack. All had advice for numerous suggestions on what we should do next - move furniture, select paint colors, lighting ideas and more. Some we will take to heart and do and others we will politely ignore.

But all this transition and change has opened a door for me to make some more changes in my life. Its not that I am hesitant to make changes but sometimes a making a few changes opens the door to making even more.

A little prod from one corner could make you rethink about why you have some connections or do some things. And sometimes they connect dots for you that you didn't really acknowledge previously. So more changes will be made in my life and I think I am comfortable with that as well.

Its not that I am trying to be vague here but I am not sure about all the changes I might make yet and have to feel things out some more. I might even redesign my blog again...

Big changes

So what do unhealthy people do when they have spare time? They pack up their house and move. Yes we are moving. There are lots of benefits for us in moving. We can cut our monthly expenses in half. I can consider stop working. I can get more rest.

I just have to survive packing and moving.

We have been discussing this for a while. We bought this house when I was healthy and working full time in Boston and commuting by public transportation. As my health has tanked, there is no reason to believe I will ever be going back into Boston daily. If we move 10 miles or so away, we can save big time. 

In the meantime, we are packing, house hunting, packing, preparing our house, packing, and packing. These are all things that healthy bodies are capable of but my not quite so healthy body doesn't like any of it. And my mind never likes change either.

Are we looking for the wrong thing?

As all cancer patients are told, after treatment you will find your 'new normal'. Basically you get to go back to being yourself again and regaining your life. But it never seems to happen.

A friend sent me this article from the New York Times on a young woman, after cancer, is looking for her old self, and being lost in transition from cancer land to her new self.

It made me think (a dangerous proposition at times). What if you are a non cancer (or non any major ailment) person, you go through life and you evolve slowly and your life changes, and its no big deal, its normal. Maybe you grow apart from some friends, gain new ones; start yoga and stop running; quit eating red meat and white sugar in order to be healthier; redecorate your house, or kept trying to lose those same damn 10 pounds. These changes happen over time but if you look at yourself from last year to this year, have you made changes? Probably. And unless you stop and think about it, you may not notice them.

With cancer (or insert any life changing diagnosis), you are yanked from your nice calm life and shifted into cancerland, riding the cancer roller coaster while holding hands with your friends, family, and oncology team who want to know about every sniffle. Then poof, you are pronounced 'cured',  get a little certificate from your chemo nurses, and your doctors don't want to see you for six months, instead of every week or month.

You are supposed to find your new normal by tomorrow morning and move on with your life, go back to work full time and be healthy, instantly.

Instead, you stumble around and wonder what a new normal is. You might be depressed, anxious, and still clinging to the cancer roller coaster at every ache and pain. Slowly you stabilize, still gasping from the whirlwind you went through for the past year.

You have lost some friends or even family who went running from the word cancer, in case it was contagious, but you gained some new ones. You got some new clothes, your work schedule changed, you bought yourself a present for surviving cancer treatment (I got myself a new watch), and you are still trying to lose the same damn 20 lbs (10 from before cancer and 10 from chemo).

And what if this is the new normal? What if its harder to find because you didn't evolve slowly but were yanked from your life to cancerland and then thrown back to your life? You have to pick away at the layers of changes to see what you like and don't like and try to get a handle on everything. Some of the changes that happened may not be the ones we want to keep but we have to learn to accept them.

We can never go back to the way we were, no matter how much we try. Who was it that wrote 'you can't go home again'? Its true, especially with cancer, we can't go home again, no matter how much we try.

There is a huge lesson here for all of us

We all have a lesson to learn here. We need to learn to accept our lives for what they are instead of allowing parts of it to cause us stress or depression.

I have now read this article three times. Learning to Live with It: Becoming stress free.

The more I read it, the more it helps me think of my medically disastrous life. I have continuous problems where my health keeps throwing another disaster my way and I have to learn to cope each one. A cancer diagnosis was one - maybe a touch of PTSD with that? But what about an RA diagnosis? Making life more fun each time.

Every change requires adaptation to survive and learn to readapt to the new parts of your life. But we don't need to change the external forces in our life - whether a bad partner, but learn to change our life to cope in its new version.

But the goal of learning to live with, not necessarily to accept it, but to cope, survive and thrive. That has become my goal now. I will keep reading and maybe learn some more about this. Many lessons here.

Dosage changes

Last year or maybe earlier this year, I have chemobrain and I can't remember exactly when, the oncologists in the US got together for a big event which they called a conference. They did get a lot of work done and came up with some new recommendations for changes in cancer treatments. One of these was to state that it is better for women with a breast cancer diagnosis to be on Tamoxifen, Femara, or the other AIs for ten years instead of five.

Well someone forgot to tell the FDA this so they FDA says five years and the oncologists all say ten years. But the FDA makes the rules so the oncologists have to bring it up to speed. One woman in Michigan has started an awareness effort to this end.

But it does raise an interesting thought. When a drug is initially approved by the FDA, the approval includes dose sizes, length of treatment, etc. Then additional research is done, whether it is on children instead of adults, or for a different ailment, the FDA needs to change its guidelines so an  amended approval is needed. I am sure there is some fancy process for this involving expensive lawyers drawing up paperwork as well as lots of research time but I have no idea what it is.

In this case, the oncologists came up with their new recommendations and now some one has to get the FDA up to speed so we can all be less confused.

Did chemotherapy change your body?

A week or so ago, I had asked a doctor about change in your body due to chemotherapy. A friend and I had the same discussion yesterday. Does chemotherapy change a person's body in more ways than we think?

I am talking about food and medications to be specific.

Before chemotherapy, I enjoyed all kinds of seafood - preferably cold ocean water seafood to be precise. Shrimp, lobster, clams, oysters, scallops, cod, haddock, hake, salmon, calamari (octopus), and more. I never turned it down. Now I hate shrimp. I won't eat them. I can't stand them.

More importantly are medical allergies. Before chemo, I was told I was allergic to amoxicillin and penicillin (full body rash and hives on an international business trip). I also reacted to the codeine in my pain meds after knee surgery. At my first chemo infusion, I learned I was also allergic to benadryl. Since chemo I have found I am allergic to:

• prednisone - also used to treat RA flare ups as well as allergic reactions
• plaquenil - an old school RA drug
• voltaren gel - anti inflammatory used to treat specific areas of pain and inflammation with RA
• adhesives - as used on pain patches

I was given both prednisone and plaquenil at the same time when first treated for RA. I reacted to both. At the same time. How (not) fun.

And as a result in being allergic to the 'cillins' I have a problem with any potential dental infections. There are four drugs commonly used to treat dental infections. Two are cillins so I can't have them. One is something else that I can't remember what its called (chemobrain) that conflicts with one of my other medications so I can't have it. The last one is super strong and is only used as a last resort. We'll just say I am limited.

If I get a basic cold, I can't take an antihistamine because of the benadryl allergy. Also, I can't take a lot of the others because of the lack of thyroid issue.

I am petrified of concerned about any allergic reactions. They seem to become more and more frequent as time passes. And since I can't be given steroids or benadryl for allergic reactions, there are other drugs which I can take but not the first line treatments. this is one of the reasons I always want to go to the same hospital which has all my medical records. 

But I digress, I think my body changed because of chemo because foods that had appeal no longer do and it seems much more sensitive to medications. My friend also has experienced similar issues. Are we the only ones? I don't think so. And I wish they told  us before chemo that we could expect these changes.

Some words of advice to those who don't want the world to know they have cancer

I started this post in mid-2009:

Over the years, I have collected my share of surgical scars - there were the ones that everyone could see and I didn't really care, like knee surgery, or the ones that were so old, like thyroid cancer, no one could see them.

Then breast cancer surgery made all sorts of fun scars. Like a giant port scar on my chest (which they cut into twice just to make sure it really shows) for insertion and removal. The one where they took out lymph nodes by my arm pit (that they also cut into twice so it really shows) once for sentinel node and once for axillary node to make sure there were no more cancer cooties and is visible with a tank top.

Then there is the lumpectomy scar, and the other lumpectomy scar, and the third lumpectomy scar which are usually covered at all times but receive radiation so they really show. Finally, there are the connect the dots on my abdomen from my hysterectomy and my four incisions for my gall bladder-ectomy.

In the midst of all the surgical fun and games, I stopped getting changed at the gym at those few intervals when I actually went. I didn't want everyone to see my scars. I was very careful not to let anyone see anything that might scream out 'SHE'S A CANCER PATIENT' so I made sure I remained clothed. Swimming in public is not an option really these days for similar reasons.

One night I had a brilliant idea and I said to my husband 'I'm going to get up tomorrow morning and go to the gym at 6 am'. Well this was a great idea at 8 pm but not at 6 am. Big surprise, it didn't happen. Then I got a brainstorm, why don't I leave work a little early and go to the gym on my way home before my hair cut. So I put together my bag of clothes and went off to work. I left work on time, didn't get stuck in traffic, and even got a decent parking space at the gym.

I went into the locker room to get changed, which was moderately full, and as I was half dressed, I remembered my connect the dots scar issues. I thought 'what if someone sees my scars????' so I resorted to the really mature 'get-dressed-as-fast-as-you-can-and-pretend-no-one-saw-a-thing'. I always believe in pretending things didn't happen and they don't matter. I know its not mature but it works for me.

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Now its 2014, someone had a blog post recently on surgical scars and showing them.I found this draft post and have done some thinking:

• I am much less paranoid these days. I have decided that no one can tell if I am a cancer patient unless I tell them. 
• I am much more relaxed these days. I can actually talk about having cancer with total strangers.
• Finally, surgical scars are better thought of as badges of pride than of shame.

Now I get changed at the gym and even wear my lymphedema sleeve in public with out a care in the world. 

Time has allowed me to change how I feel. The old adage is true, time does heal all wounds... except sometimes that word 'all' should be changed to 'most'.