Its a different perspective

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

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

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

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

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

Here's a solution: Education

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

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

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

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

Do you feel more educated? Yes? Good!

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

Medical conditions are isolating

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

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

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

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

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

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

Is the internet a substitute for the telephone?

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

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

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

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

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

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

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

Generics and prescriptions

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

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

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

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

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

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

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

Think before you eat

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

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

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

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

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

Breast cancer screening - why not?

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

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

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

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

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

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