What A Concept!

I met with a pharmacist yesterday or a pharmacologist. It was great. When I had my annual physical with my primary care doctor in September, she was concerned about my medications and interactions.

The pharmacologist went through my entire list of medications - prescription and OTC - and asked why I was taking each one. Then she went through and looked up possible interactions with them. She gave me some advice which I found very helpful.

• Because I am on Prilosec for GERD from a sliding hiatal hernia, I need to take it in the morning, 30 minutes after my thyroid medication and then wait another 30 minutes before eating. I was taking it in the evening.
• I also need to get off prednisone for my RA.I am on a low dose but its not a good idea to stay on it long.  I will stay on it until January when my hopeful new RA medication will kick in and then I can ditch it.
• As my pain management doctor has already suggested, and I really want to do, is to reduce my Lyrica dosage or even get off it. My previous pain management doctor, if I said I had pain, he would say, 'let's increase your dose'. But he never gave me any information why or requested any scans or testing. This is why he is no longer my doctor. I meet with my pain management doctor next week. 
• I also need to change my Calcium with D to calcium citrate not calcium carbonate - something I completely blank out on when in the store.

Also, I am only on about four medications for the side effects of other medications. We had to laugh at that. 

At the end of the appointment I felt very good. A knowledgeable neutral party had looked at my meds and found that I need to be on the meds I take. I need to be careful about some interactions and see if I develop any symptoms and cut down if needed. 

I feel like I should do this every five years or so. I feel that not all doctors look at what other medications I might be on before prescribing something new.  A good experience, for once.

The Road Through Chemo

Everyone's road through chemotherapy is a bit unique. We all face our demons of nausea, fatigue, hair loss, and emotional ups and downs differently. We struggle through. And then we somehow make it

I am always interested in hearing about other's chemo misadventures. Stephen Blyth wrote about his chemo story in the Boston Globe. He begins with the advice from the National Cancer Institute:

"The National Cancer Institute tries to be helpful: “At some point during chemotherapy, you may feel: Anxious; Depressed; Afraid; Angry; Frustrated; Helpless; Lonely. It is normal to have a wide range of feelings while going through chemotherapy. After all, living with cancer and getting treatment can be stressful.”

These words made me want to yell. Do they not understand? It is not remotely normal to see only bleakness, to be continuously angst-ridden, and to lack the spirit even to say good night to my precious daughters.

“Many people find that light exercise, such as walking, riding a bike and doing yoga, helps them feel better.” This advice enraged me: The very idea of exercise was laughable. Each night I would resolve to walk round the block tomorrow. But in the morning I would lie unable to rise, unable to sleep, taunted by piles of unread, unreadable books by my bed. 2.30 p.m. 5 p.m. A shuffle downstairs for a bowl of cereal, the act of eating an unexpected respite, then back to bed. My wife was unwavering in the face of such misery: You will feel better, it will all be OK. I knew she believed this, but I did not."

He clearly starts faced with the fact that much of the advice for cancer patients comes from people who do not have a clue. Clearly the advice from NCI is in that category. This is one of the things that all cancer patients learn - people who haven't walked the walk, are unable to talk to the talk. They do not have a clue.

But as you read through his story you see how he learns to get through it. He gets a good social worker who gives him advice and supports him as he goes through his infusion. Her advice is one task a week - send one email. That makes things manageable. I can relate. I could do one thing a week while in chemo.

He learned that it is normal to deal with the emotional side of chemo. He meets a new friend along the way who told him when he went through chemo for lymphoma, he struggled as well emotionally. "“I found the nonphysical effects of chemo the hardest. Psychologically I fell apart.” I felt another flash of self-compassion. So it’s OK to be like this. I had been given a lifeline." 

Finally he makes it through. His brain starts to clear, he is returning to life. I cannot say returning to normal because you can't. I just really like his descriptions of his chemo adventure. He put into words what I could not - the ups and downs of cancer.

The Most Important Part of My Health

Last week my husband has accused me of being cranky several times. My back has been hurting more than it is supposed to (considering all the medications I have to stop that). I have not been in a good mood.

Saturday night I didn't sleep well. I am blaming the (damn) cat for that as he insisted on spending the night out and I got up four times to see if he would come in. My husband tells me that he will be fine when he spends the night out but I know we have coyotes, fisher cats, bobcats, and foxes who would be happy to make a meal of him. And he still doesn't have enough life skills to know about all the potential perils of the great outdoors.

Okay, I got a little side-tracked there.

I hadn't had a lot of sleep last week in general. My body now needs a few nights of at least 10 hours of sleep each day. This doesn't mean lying in bed and taking it easy or napping. It needs 10 straight hours of sleep.

Last night, I went to bed at 9 and fell asleep. Actually I got in bed around 7 because I was tired and read and knitted. My light went out at 9 and I woke up after 7 this morning. I slept through my husband's alarm and morning routine. But I feel great. I really do. I slept well. I feel very rested. I can attempt to be a normal person today (unless I do something stupid like pretend I am a normal person and overdo things).

So the most important part of my health is sleep. Lots of good sleep.

So my non-doctor prescription if you aren't feeling well is to get a good night's sleep.

Heeding Advice and Enjoying Life

With any ailment, you get advice. Some of it is nice, sane, logical, and seems plausible - like rest, hydrate, elevate, ice it, if pain starts - stop what I am doing, etc. This is possible. You can do it. And some of it, not so much - keep elevated for at least 30 minutes out of each hour or at least 5 portions of fruits or vegetables with every meal. Really? I can try for that. And finally, some of it is just plain impossible - lose 30 pounds or non-weight bearing at all times for six weeks or anything that is just too restrictive to handle.

My point is I get a lot of advice from my doctors, and a lot of other people. I selectively heed it. I mean if I listened to everyone I wouldn't have a life, I would be really boring. And there is a point where I just can't do any more.

I have made the following life changes in recent years:

• I gave up smoking. I never was a heavy smoker (5 cigarettes a day) but I did smoke for a long time. 
• I exercise three times a week. I get 60 minutes of cardio and then 30 minutes of weights and resistance training, followed by stretching.
• I try to eat healthy. Fruit and vegetables are a big part of my diet. I also skip packaged food as much as possible. I avoid desserts and a lot of sugar as much as possible. I skip salt as much as possible.
• I pace myself and get rest and make sure I do not over do things. 
• I take my medications as directed, go to my doctor appointments, and listen to my doctors.

But there are other things I am not going to give up:

• Wine. I like drinking wine. I enjoy a glass of wine with dinner. I do not go bar hopping (in fact I can't remember the last time I went to a bar). But I like a glass of wine.
• Red meat and bacon. I don't eat bacon cheese burgers all the time. But a nice steak on the grill or bacon for breakfast sometimes is nice.
• Gardening. I have been told not to sweep, vacuum, rake, mop, lift weights, bend down, or carry things. But I love my garden. I want to grow my garden (more healthy veggies). I can get myself in a lot of pain by gardening. So I leave all the heavy lifting to my husband but I get out in my garden every day I can.
• Bad TV and romance novels. Why not? Its my brain (or what's left of it) to rot.

What it comes down to is I need to be able to enjoy my life. I want to enjoy my food and drink. I want to do things I like to do. I can't be boring.

Doctors Paid to Tweet

Twice last year (March and June) I blogged about doctors who provide medical advice in a tweet. Now I found out that doctors are being paid by pharma companies to tweet about specific medications. And doctors who use social media do not disclose that they have been paid to do so.

So now I am even more on the side of medical advice for me will not come for a tweet. Their impact on my life will be the same as an ad for a pharma product - I ignore them and wait until my doctor tells me about it.

Too much advice = too much confusion

With every ailment, comes a list of advice. Do this, don't do that; eat this, don't eat that; these exercises, not those.That's fine with one ailment. But with my list of ailments, it quickly gets very confusing.

I subscribe to multiple Google Alerts - one for each ailment. Each one sends me a new list each day of articles or blog posts or some other piece of information found on line on each topic. The daily melange can include anything from somebody ran a race to fund raise for someone with one of the ailments to a medical research advancement. So there can be everything.

Including advice. Today's advice included diet secrets for arthritis, prescription review for fibromyalgia, a male oncologist who got breast cancer, and some woman and her family get lots of support after her thyroid cancer diagnosis. First of all its too much information for me to digest this early in the day, never mind later in the day.

Second of all, if I tried to select a specific topic (food/lifestyle, for example), it gets very confusing. Eat this, not that; drink this, not that; do cardio, skip cardio and do yoga, but my doctor says no yoga. Aaarrrgggghhh!

I give slightly more weight to advice from medical professionals, especially from my doctors. If one doctor gives me advice that conflicts with another doctor, I will ask what I should do.

So how do I handle all this? I do what feels right for me. That's the only way to deal with the piles of advice.

Talking the talk if you haven't walked the walk

This eternally irks me - people who try to talk the talk and they haven't walked the walk. It is when anyone - your doctor, family member, friend, neighbor, cousin's hair dresser's dog walker's uncle - tries to tell you how you feel or should feel or be treated.

And just how did you get this knowledge if you haven't been in my shoes? This is when my friends try to tell me that I will feel better if I take a nap. Or someone else who thinks that I can be cured by something - a doctor appointment, procedure, nap, or something else. Or my former acupuncturist who thought my lymphedema would resolve itself.

I can't forget about the people who tell me about their family member's previous treatment for a similar ailment years ago and how its probably the best thing for me so I should change to another doctor who will give me that same dated protocol.

Let me just say to all of you: you have no idea of what I am going through. I know people who have one or two of my ailments and realize that they only deal with a portion of my life. I think they wonder how I cope.

Then I meet people with one or two of my ailments and/or a whole bunch of other ones and wonder how they cope. I would not attempt to give them any medical advice. Actually those people and I usually get to share tips such as - going to a specific support group, or compare diet modifications for symptom relief, or thoughts on disability insurance. Or we compare doctors and hospitals. But our treatment protocols can be compared but never recommended.

We all realize that we are very different people and our ailments require differing treatments. We are walking the walk so we can talk the talk. We know how to juggle our medications and side effects. We know how to manage fatigue and stress and temperature changes. We understand the significance of ailment progression. We know about long term relationships with doctors. We know what chronic means and how our ailments won't go away and we will continually face health challenges.

If you are not one of these people, please don't give me health advice.

On ignoring doctor's advice

I am not going to say doctors are gods or anything, but they did go to school for many years more than I did so I can easily admit that they might know more about medical crap than I, even if their bedside manner really sucks at times.

I also strongly believe that as patients we owe it to ourselves to do our research, listen to our options, and do what we feel will help us best. And if this includes juicing, yoga, fasting, acupuncture, turmeric, coffee cleanses, or whatever, we also owe it to ourselves to listen to the advice of our medical professionals.

It is a real shame that some people die when they choose to ignore medical advice and advancements. New research out of Australia focuses on young cancer patients who are ignoring medical advice to cure their cancer through diet changes and result in unfortunate outcomes. These popular bloggers are not properly trained medical professionals so its not that surprising that these are the results are what they are.

If diet could cure us, we wouldn't need doctors.

We must listen to our doctors advice, and sometimes question it, but heed it for the most part. If we don't listen to our doctors and heed their advice, we can't fully question it and then make our good decisions based on our experience with it.

Doctors on Twitter

A while back, I blogged about getting medical advice on Twitter. I am clearly on the fence about this one. I found an article on Cure Magazine on doctors who tweet which discusses gaps in knowledge between doctors and patients.

It is clear that there are gaps between what a doctor knows and what a patient does - that's because they went to medical school and we didn't. I think if knowledge can be shared between the two groups that is great.

However the volume of cancer information tweeted by doctors on cancer is clearly skewed. Breast cancer is the most tweeted, 19%, followed by lung cancer, 9%, which does not reflect the number of diagnoses. So if you have breast cancer you can probably find a lot of information on Twitter, particularly on the Monday #BSCM chats where a single doctor, the host, (who I follow but rarely read) generates most of  the tweets.

Blah, blah, blah, this is all great. But (and you knew that was coming) I don't really care.

I mean I am on Twitter and have been on it since about 2007. But I am not a huge user. My blog generates a tweet every day and I do sometimes go read and follow and reply to tweets but not often. And I know a lot of people who are online but don't use Twitter for whatever reason either.

So go ahead and get information on Twitter if you want. But its a small number of  patients and a small number of doctors who generate most of the information. I'm okay with this. I can't read every bit of information out there on my ailments and can only absorb some of it anyway (more than my brain capacity). But if you tweet and like getting information Twitter, you can.

All those "Don'ts"

Normal people (I assume because I haven't been normal in a really long time - at least physically, mentally may be another story) go to the doctor or dentist and get all sorts of advice. Floss, brush, eat healthy, blah, blah, blah.

Me I go to the doctor or dentist or other medical professional and get a list of don'ts.

• Don't lift anything over 15 lbs. (For the rest of your life)
• Don't twist your back (Ditto)
• Don't use a treadmill (Ditto again)
• Don't drink alcohol (because of your meds)
• Don't stop exercising (because you may never be able to start again)
• Don't rake, shovel, vacuum, sweep, or anything like that.
• Don't forget your eye drops twice a day or more often
• Don't forget your dry mouth rinse
• Don't forget your special tooth paste
• Don't forget your new prescriptions

And I'm sure there are more but its too early in the day for my brain to work correctly. These are followed by the lovely tips such as 'eat healthy', 'get plenty of rest', 'take care of yourself', 'floss' (because what dentist hasn't told you to floss), and 'here are some more tests for you'....
I just get frustrated by the limitations in my life. Why can't I just be normal and do all the things I want to do. Museums would be nice but that involves long walks and standing around. Two things I don't do well. And before you suggest it, I'm not ready for a wheelchair anytime soon. I like walking on the beach but now am limited to packed sand at low tide. And I can't go as far as I would like.

They say a cancer diagnosis leads to PTSD and depression often accompanies an RA diagnosis. So how's my mood? I have drugs for that. And therapy. And a lot of frustration.

Choosing the advice to follow

I get a lot of advice on how to be healthy. And I find even more in the media. So my problem is which pieces of advice to follow and which to ignore. I finally have made a decision. I will only follow the advice I like.

For example, if advice includes eating more dark chocolate, count me in. But if it says eat more tofu, no way. This morning alone I have seen advice to drink more coffee to protect against breast cancer recurrence, vegetarians should eat more fish to prevent colon cancer, and cereal is a superfood.

I am not a vegetarian but we do eat fish at least once a week. I am drinking coffee as I blog. I did try some instant oatmeal (not something I usually eat) this morning but apparently it had been in the pantry too long and is now in the trash. I am having Icelandic yogurt and a banana instead.

I get so much advice, I feel overwhelmed at times. I get too much advice. Every doctor gives me advice. Friends give me advice. The media gives me advice. I give up. I think I am smart enough to make my own decisions now and will continue to listen to new medical advice but am done trying to follow it all.

Advice from a long, long time ago

Well back in 1981, I was told I had cancer the first time (and stop trying to figure out how old I am - I am 37 this year, I will be 37 next year, and was 37 last year.). I was the good patient. I went to see my doctors and had all the fun tests after surgery and learned to take my thyroid pills regularly (except today when I cant remember if I took it or not - most aggravating).

Then all of a sudden my doctor said 'You should be fine. Live a healthy life style, don't take risks, each right, and get plenty of sleep'. WHAT????? But I'm still in college. I don't want to live a healthy life style. I want to go to bars, dance to live music, stay out late, eat dessert for breakfast and breakfast for dinner and live on beer, coffee, and TAB (remember TAB?)

So after ruminating on this comprehensive advice for a few months, I decided that although I had been told I had cancer and would have a life of being dependent on a little bottle of pills, I was going to live my life on my terms. I wasn't necessarily going to play in traffic but I was going to do what I wanted.

I did do things like 18 months after cancer treatment, I went to Europe for six months to study. I survived that - being away from doctors and living my life as I wanted. I finished college, got a real job, started a career, and all that. I didn't implode. I had fun. And I am still here.

I may have had cancer again and my health may not be so great in a lot of ways, but I'm doing what I want for the most part and having fun. I don't think a cancer diagnosis, or two, should take all the fun out of life.

So my advice for the post cancer life is do what you want, don't play in traffic, and have fun.

LAME advice from an oncologist on breast cancer

I believe this article was originally an announcement of a new doctor at a teaching hospital in Houston. But was later retitled "Oncologist advises what to do when after breast cancer diagnosis"

It is very LAME advice. I actually do not consider it advice, may be on a very basic level.

“My advice for any woman who suspects she may have cancer is that she ought not delay seeking treatment, even though it can be very scary and anxiety-producing,” she said. “My advice for newly-diagnosed patients is to bring one other person to your visit. It is very helpful to have extra eyes and ears to help you remember what is discussed. A breast cancer diagnosis is often urgent, but not emergent. That means that you can obtain a second opinion if you feel like you need one. If something is not clear, it is OK to ask.”

Let me add, she is 40 and obviously never had breast cancer. She should not be in the advice giving department at this level. And what the hell does 'emergent' mean to a breast cancer patient anyway? Is it going to emerge from her skin if she takes too long?

I'm sorry. I have read lots of good advice from all types of doctors and this just is not in that category.

Words from an oncologist

A few months ago, an oncologist wrote a "Letter To A Young Smoker From An Oncologist". I found it very touching and meant to blog about it at the time - but chemo brain made me forget. It is a great article to share with someone who smokes and knows they shouldn't. Maybe it will help them quit.

Then the other day I found a sequel to the first letter entitled "This Is My Last Day On Earth" also written by the same oncologist, Dr. Craig Hildreth, MD. This is written from the patients point of view on dying of cancer and the issues that supported them and what they fought to the end.

The patient writes special notes to:

• The oncologist with thanks for the compassion and caring
• The insurnace company with outrage for refusing medicaiton
• The nurses for their care
• The loved ones with regrets
• And finally to himself.

I hope there are lessons here for all.

Your doctor can fire you too.

Patients often talk about firing their doctor and moving on to a new one. Sometimes its bedside manner, perceived lack of compassion, or changing medical needs. I strongly believe that patients should have the ability to fire their doctor if they want. There is no reason why not.

As patients become more and more self educated, they become more outspoken and more demanding, questioning their doctors. There is nothing wrong with this but we need remember doctors are people too. They can fire their patients too. Recently on one of the billion cancer related message boards I am on, someone was writing about how their doctor 'fired' them. The patient questioned her doctor repeatedly on a changed medicine dose and finally the doctor's office told them to find another doctor.

Hmmmm.... Let's see. The doctor went to medical school and knows how to treat patients - or that is the premise when they graduate and get their medical license. They learn which doses are appropriate for patients. They probably have little reference charts too.  They are doing their best to treat their patients.

If my doctor tells me what dose to take of a medication and I ask why, if they can provide a good explanation, I accept it. It does me no good to press the subject. I'm willing to give things a try and if it doesn't work out, I can go back for a change. If I wasted my time arguing with my doctors on every point, I wouldn't have any time left.

I believe that patients should ask their doctors questions about treatment and not hesitate in getting second opinions if needed. But we also have to rely on our doctor's advice and treatment plans and accept that they are giving their best advice. They probably consult with other doctors on difficult cases as well.

Patients need to keep in mind that doctors are people, in fact they are very busy people. If all their patients questioned everything, no one would ever get treated. We can ask but need to be polite about it, not argue the issue to death, and respect their advice. Or we run the risk of getting fired.

Doctors

Usually when you visit the doctor, the hospital personnel and medical staff all seem to be on the healthy side. There may be a few exceptions but hospitals seem to be full of doctors and nurses and other who have narrow waists, low BMI and you never catch a whiff of cigarette smoke near them. I can say that all my doctors are a healthy weight - except the pregnant ones.

So when they start talking about weight and healthy eating and exercise, I do give them credit that they must follow that life style as well - they must walk the walk as well as talk the talk.

I know about twenty years ago, I was treated by a nurse who had a pack of cigarettes in her pocket. I never see cigarettes around any more. The hospital now has a no smoking campus, so you see dwindling numbers of smokers hiding off the edges of the property enjoying their morning cigarette.

But what if you saw a doctor who was obese, reeked of cigarette smoke, and had the unhealthy pallor of a couch potato who's idea of exercise was another trip to the refrigerator? Shouldn't your doctor practice what they preach? Doesn't it give them a bit more credibility? What if your dermatologist was sporting a sunburn? I think if my doctor was an obese, chain smoker I wouldn't give any of their advice as much credit.