Friday, December 31, 2010

1000 character medical description

Computerized medical records are the way of the future. Oh goody. now we are dependent on technicians limiting what doctors can say about us and making them fill in forms etc. What if we don't fit in a form?

This doctor was trying to describe his patient's health and was stuck with 1000 characters. Could I be described in 1000 characters? I just went over to MS Word and started typing to describe myself. I got up to 300 characters pretty darn fast. Never mind talking in medical jargon about my health crap. And all of my health issues which are still in paper records in a vault some place.

But if a doctor is prepping me for surgery or making a treatment recommendation, there should be no limitations on what (s)he is writing. I want a full description and complete details. My red blood count runs low because of chemo so it is not an indicator of other problems. My blood pressure runs low so if it gets to a normal level, it might be considered on the high side.

Think about you and your health, shouldn't a doctor have lots of space to describe you?

A programmer who sets a limitation on a doctor's assessment or treatment has no medical training. I understand the need for computer fields that are the same for each patient and the whole point of computerization is to have standardization, etc. But the human body is a mystery and medical science can not be limited by computer fields or number of characters.

Computerized records might be a good idea but I think we need to work out the kinks.

Thursday, December 30, 2010

A scary medical error

I am not being Chicken Little and saying the sky is falling but I find this quite scary. You go for a medical treatment or receive a medication, you assume they are doing it right. I mean we all hear about medical errors and we know that there is always the possibility that you might wake up with the wrong kidney. There are lots of checks in place and lots of publicity of this. The errors are usually known immediately.

But what about this: you go for a pinpoint radiation treatment, it administers an overdose. You don't feel the symptoms right away but then turn into a vegetable and spend the rest of your life in a nursing home.

One hospital administered the wrong dose for FIVE YEARS!!! before they figured out that the machine was calibrated wrong.

What is wrong here? Lets start with better training for technicians and physicists (I used to work with physicists and just because they are really smart and have lots training, it doesn't mean they know everything - we won't talk about the nerd factory either), better communication from the manufacturers on how to calibrate, many more checks to make sure the right doses are being given.

I think this is a clear statement of just because it can be done, doesn't mean you should jump right in and start offering the treatment without ensuring everyone knows what needs to be done to administer it correctly. Five years of wrong treatments? Eek

Wednesday, December 29, 2010

The benefits of exercise - BLAH!

They talk about the benefits of exercise. I joined an exercise class to make me feel better. I do feel better. But I still have all sorts of back pain. In fact I have new areas of pain in my back, and hips, and shoulders, and legs. So much for this exercise class.

Okay I don't think that its been all bad. Its not that I can touch my toes again - I can't - but its not part of the class. I don't have to touch my toes. In some ways I feel better but I want the magic class to make everything stop hurting. So much for exercise. BLAH!

Enough whining, for now. I'm sure I'll have something to whine about in the future (and I won't ask for corroboration from my husband on that). My back still hurts.

Tuesday, December 28, 2010

That common New Year's Resolution

I think its the most common New Year's resolution in the country - losing weight. I have actually heard that most resolutions are broken in the first half of January. But I resolve this year to eat even healthier than I have been. Yes this is possible. I do admit to eating white flour and sugar still. But I try to save them for special meals. We usually do not have dessert.

If you believe CNN, the latest diet is the Back to Basics Diet. This means whole grains, vegetables, fruits and not as much processed food. I can do this.

Here are a few diet tips that I think are unrealistic:
- Eat out more. If you are someone who nibbles while you cook, you should eat out more often. That makes sense. Skip home cooking and eat out where meals are full of salt and oils and portions are out of control.
- The Grapefruit (or any other single food) diet. If you are only eating one thing, as soon as you stop, you will gain that weight back.
- Name the plan that makes you eat their packaged food. Your diet will only last as long as you eat their food. So when you go broke eating their food, you will get fat again. You will end up fat and broke. Also, their tiny little food portions are often full of soy for protein which isn't good for some of us with hormone positive breast cancer.

I think the best way to lose weight is a combination of Weight Watchers which teaches portion control and the Back to Basics where you skip the processed food. Maybe if I did this, I could lose some (damn) weight.

Monday, December 27, 2010

Snow and winter and cancer

It snowing out. It snowed all night. It snowed since yesterday afternoon. It is supposed to keep snowing for a few more hours. Our street was just plowed. We couldn't tell where the yard ended and the street began. I now have to wait until my husband starts shoveling and using the snow blower. I can't shovel. I can't use the snow blower. Bummer.

No its not a bummer. I will stay inside where its warm and get some work done. Its pretty to look at but I'll just stay here and hang out with the cat.

Between my tennis elbow, lymphedema arm, and bad back, I'm not going anywhere until the snow removal process is complete. I had actually planned a work at home day today so this fits in just fine. My husband's office (USAF) said non essential civilian employees did not need to report so he is happy to stay here with me and the cat.

Sunday, December 26, 2010

Life without cancer - what would it be like.

Is my husband right? I deny this. He might possibly claim I over did things in the past few days. I am not going to say he's right but I am tired. I am achy. I am exhausted. I am lying around in bed doing a lot of nothing. I have some stuff to take care of today - laundry, wasting time on line, etc.

This dealing with my health is wearing me down. But then I stopped to think, if I didn't have cancer, what would my health be like? I mean my thyroid cancer, aside from lifelong vigilance, has left me with a daily thyroid supplement. Has that contributed to my osteopenia issues or not? It depends which medical study you read.

Has my breast cancer treatment caused additional health issues? Well the surgery caused lymphedema and a sore shoulder. Chemo has left me with slightly low red cell counts. I take daily Femara for the next two years.

But would I still have back issues? They aren't related to cancer. I mean I assume my disks would have decided to degenerate without any cancer contribution. This is what causes my pain, exhaustion, fatigue, aches, etc. And its the reason I had to give up so many activities. My ankle still would have been sprained - I can't blame lack of coordination on cancer. Tennis elbow is not related to cancer - but possibly contributed to by over use on the computer which might be a tiny bit contributed to my blog which is the result of cancer. But I can't blame it. I would probably be working more instead of blogging as much and that would have done it too. My partially torn ACL from skiing and multiple fibroids which resulted in a hysterectomy would also have happened and are not related to cancer. Its nice when I go to the doctor and am told that its not related to cancer.

Would my life have been different without cancer? I am not thinking in terms of the 'woulda, shoulda, coulda's' that would be regrets. But what would my health be like if I erased cancer from it?

I have felt tethered to a bottle of thyroid hormones for nearly 30 years. How far can one travel on a 90 day supply? Would I have joined the Peace Corp and gone to Africa for a few years? Or maybe not. Now I am not tethered to one bottle but to five prescription bottles and have to get refills regularly. I have tried to reduce my trips to the pharmacy to once every two weeks instead of every week something always seems to interfere. Never mind an extended trip overseas... Travel now involves zip lock bags of pills in my carry on luggage.

Cancer may have slowed me down but its not the only cause of my health problems. I still plan on traveling. In 2011, we are attending a family reunion down in Maryland and head to Iceland in September. Cancer is not going to run my life. But sometimes I do wonder what life would be like without it.

Saturday, December 25, 2010

A conundrum: organic doesn't equal healthy.

Organic doesn't mean healthy. Why are we buying organic food if it isn't healthy? Because its healthier. Regular food which is processed can contain pesticides or hormones or bad fats or other things that aren't very good to eat, or ones that we wouldn't assume are in it.

Why is there sugar in your peanut butter? Why is there corn syrup in your salad dressing? Why are there hormones in your meat, cheese, and milk? Because food manufacturers discovered ways to get things to market faster or to make them taste better by ladening them with salt.

If we go over to the organic section, you might find food that is natural and not full of sugar, fats, chemicals, etc. But its full of what it was meant to contain. A root vegetable is full of natural sugars. If you roast some, they will have a natural sweetness from the natural sugar. Organic potato chips which are made from organic potatoes and fried in organic oils are still full of fats. The bad kinds.

If you want to eat healthy, go to the organic section and read the label. The label is still the most important part. Look at the ingredients, the calories, the fat, the cholesterol, the sodium. Organic foods can be just as bad for you as regular food, minus the chemicals and hormones.

Friday, December 24, 2010

Does it really matter?


A seasonal bit first.

The president enjoyed a bit of activity and lots of political rantings and ravings have ended in the Senate and the House and bills were signed. Finally, Don't Ask, Don't Tell is repealed. My question is: does someone's sexual orientation really matter?

President Kennedy was the first Catholic President. President Reagan was the first divorced president. President Obama is the first African American president. President Taft was so big he had a custom designed bathtub to fit him. President Roosevelt had polio and was in a wheelchair. President Lincoln was born in a log cabin, not a mansion.

Did any of that affect how they did their job? No. Does it really matter if someone is short, tall, fat, thin, white, Asian, African American, Protestant, Catholic, Amish, Atheist, Agnostic, Jewish, Muslim, Hindu, straight, homosexual, bisexual, blond, brunette, redhead, blue streaks in their hair, nose ring, multiple facial piercings, tattooed, athletic, or couch potato? Probably not.

The military has an issue with homosexuality because of the close confines etc, etc. But they allow women. Women if they are heterosexual would be interested in the men and vice versa. So what if there are men who are interested in men or women who are interested in women in close confines. They are there to do a job. They are not there for sex.

According to my husband, who was in the military, the real problem will be that so many people are not comfortable being around gays who are out. There are the social issues of family housing for gay couples, or survivor benefits, etc. In combat situations, people are there to do a job and are so dirty and tired and smelly, they do not want to be near themselves, let alone anyone else.

If you are in a car accident and get taken to the emergency room, are you going to make sure anyone who treats you is not different from you? Does it really matter if they are saving your life? Same thing, if they are fighting for this country, does it matter if they are gay, straight, or bisexual?

So if the real problem is that people are uncomfortable with people who are different? Oh, get over it.

Thursday, December 23, 2010

The Power of One

Have you ever thought that your efforts don't count? There is no sense in voting, caring, giving, or helping because you are only one? Well everyone counts and one little effort can snowball into a giant blizzard of good things.

Yesterday morning a friend sent me a link to her daughter on Reddit.com. Her daughter had posted she would give a gift of up to a $30 item from Amazon and have it shipped to arrive on Christmas. She quickly received a request to send an E-Z Bake Oven to a little girl in Oregon. Then she started receiving dozens of requests to help and for help. She started matching them up and stayed up until 3AM matching people until people started matching themselves. Over 300 children received gifts they wouldn't have from caring strangers. See, one little good deed can end up helping many.

The other day, my mother sent a link to a New York Times article about giving the gift of hope. How to help those in need around the world while you do your holiday shopping.

Finally, another way to help others while you shop is to use goodshop.com to do your shopping. Go there, pick your charity, do your shopping on the company's real website and a percentage of your purchase will go directly to the charity of your choice. Or use goodsearch.com to search on line. Every time you search a donation is made to the charity of your choice.

If everyone was just a little nicer, cared a little more, took a moment out of their day to help someone else, how much better would the world be? One little tiny step can help so many others.

So I challenge you all, what is one good deed you can do for someone in the coming months. Help an elderly neighbor clear his driveway? Give a gift to someone in need? Take someone who can't drive to the grocery store? There are millions of ways you can help someone. Some require money, some don't but all require a few minutes of your time to help someone else. Can you do this? I will.

Wednesday, December 22, 2010

A tiring day as a patient

Yesterday I had an event filled day. I must say the evening before there was a little bit of snow and my husband who had not seen the need for four new tires on the car, after a sliding backwards event, agreed that tires were needed.

I said I would call about getting the tires in the morning and see if they could put them on in the morning. I called the tire shop at 8 am when they opened and got someone who said they had two and would call me back if they could get all four and install them.

Then I went off in the car with the bad tires to PT for my (damn) tennis elbow. Over the weekend, I found the skin on my elbow was all red and irritated and raw from the treatment - he does ultrasound, massage, and then some weird thing with electrical impulses pushing some prescription medicine into my elbow. Evidently the adhesive has a similar reaction on my skin to paper tape...

Then I went off to the ankle doctor to find out if there is anything that can be done for my ankle or am I doomed to have a swollen, sore ankle for the rest of my life? The answer was an MRI to see if anything has changed since the last MRI in January. If it has, maybe surgery. If not. I am doomed to have one fat(ter) ankle. I told her she said the wrong thing, she was supposed to snap her fingers and fix everything. She said she would look for her magic wand. I just want something that gets better.

So I went to scheduling and took the first available MRI - it was at 2:15AM this morning. I took it. I will the doctor in a few weeks to find out the results.

From there I called the tire store and the smart guy who runs the place said they had the tires, they could put them on, and have the car back for me by 3pm. I dropped the car off and walked home with my bag of prescription I had filled in the AM, two loaves of bread and some prosciutto for Christmas dinner in a bag. That damn bag got really heavy. I had a choice of carrying it on tennis elbow arm or lymphedema arm. I got smart and stopped at the chocolates store and got two shopping bags to split the load.

Finally at home, I did some work and relaxed until I walked back to the tire store, with no packages, and went back home, until I had to leave to see my therapist at 345pm so back to the hospital, again. She thinks I am doing fine (and am relatively normal in case you are wondering). But in terms of upcoming stressors, there is that damn ultrasound next month to worry about but I will stress about it next year so I may be less fine and less normal then. So back home, made dinner, went to bed early so I could get up at 1:35AM to go for my MRI.

I went back to the hospital for the third time in 24 hours and pulled into the main parking garage, parked in one of the million empty spaces which was right near the stairs. Then I walked down and over to the hospital and found a sign that the main doors were locked from 12-5am and I needed to enter through the ER - which means parking in the little ER lot, which is free, and saves me 10 minutes of walking through empty hall ways. Back in the car, I drove around and parked and went for my MRI. I got a nice nap while being MRIed(is that a word?). I then came home at 3:30 am and went back to bed but didn't sleep well. Which is a good thing since my husband had set the alarm to wake me up at 130 in the morning and then reset it for getting up as we usually do around 5. But when we did get up, he found that the alarm was not set and the clock said it was 9am. (Moral - do not attempt to set an alarm clock in the middle of the night.)

I am now awake - mostly but not completely. I will leave for work shortly but am not going to get in as early as I had hoped. This means tomorrow morning I will be there bright and early so I can do the planned database updates.

Tonight I am going to bed at 8pm to recover from a day of being a patient. I only had 3 appointments within an 18 hour time frame. I am exhausted from being a patient.

Tuesday, December 21, 2010

We are what we eat

I care about what I put in my body. I prefer my own cooking because I know where my food comes from and can limit the amount of salt and oils that go in my food. I prefer to shop locally - from farmers markets, CSA's and farm stands. I do use the local grocery stores but am picky. I do not buy produce and eggs in the grocery store unless it is an emergency. (Its hard to have a vegetable emergency I know but sometimes they do happen.)

I have concerns with the food supply regarding produce, poultry and dairy products. I don't like the idea of factory farms. I don't like the idea of farmed fish. I really don't like the idea of farmed fish or factory farmed meat from outside the US. How clean is the water the farmed seafood was in a Third World country who has water supply problems and is used as a dumping area by factories who face no regulations in regards to toxic waste? I don't know.

I prefer to get my food as close to home as possible. If I really want to I can go visit the live chickens at the local farm stand before purchasing them for dinner. I liked that idea when I was 5. Now I have decided they are too cute to eat so I skip that step and just eat them.

I was concerned that the food safety bill might not pass and was pleased to see that it did pass yesterday. The previous regulations dated from 1938 which was before the import of vast quantities of preserved and fresh foods. The world has changed and the regulations need to change as well. Some can argue that this gives the government too much power but please explain that to the people who died last year from salmonella and e.coli contaminated food.

What I like about the bill is:
- it makes it easier to find out where the contaminated food originated. I didn't understand why it would takes weeks to figure out where the spinach was grown that was contaminated.
- it empowers the FDA to pull food from the shelves without waiting for the manufacturer to voluntarily recall it.
- it ensures that imported food meet US safety guidelines. Why are we eating food from a country where we are told not to drink the water because it is not safe?

There is a lot more in the bill but this is what I like about it. It may mean more control but I think I like these parts.

Monday, December 20, 2010

A dictionary for all

We use toiletries and cosmetics to enhance our natural loveliness. But there are bad things in them. Have you ever wasted time at the cosmetic counter trying to figure out what is in the items you want to buy? I mean its sort of like buying food - you (should) want to know what's going into and on your body. Like chemicals related to carcinogens found in cosmetics.

But there is no FDA providing a dictionary. Every try reading the label on your hand lotion? Impossible. But Martha Stewart, the felon and home decorating maven, has come up with a simple list. (As you can tell, I am not a Martha Stewart fan, even before the big arrest. She was a bit too smug for my taste and I don't really need help in folding dinner napkins into turkeys - mine are folded into rectangles.)

My point, and I do need one or my blog post is a waste, is that cosmetics and toiletries, which go on your body are worthy of the same consideration as what goes in your body. Think natural. There have been many dangerous heavy metals used to make the colors in the cosmetics.

My solution for the cosmetics is to buy natural ones. Bert's Bees is one of my favorite brands of skin stuff. Otherwise, check the dictionary Martha provided if you use the other kinds. Or be really lazy and forget to put on make up as you run out the door.

Sunday, December 19, 2010

A Sunday morning ramble

This morning I don't have a topic. I think I just have a ramble. I am ready for Christmas I think. Well, mostly. My parents are coming here for Christmas day and I have two ducks in the freezer as well as some shrimp waiting to be defrosted. We will have shrimp cocktail; arugula, pear and asiago salad; roast duck with apple chutney, whole wheat bread based stuffing, chestnut stuffing, and some green vegetable; and chocolate souffle with ice cream and chocolate sauce for dessert. I have to get to the store for a few more ingredients.

The presents are wrapped and under the tree. As a result, the dining room, a/k/a wrapping central, looks like a bomb went off in it. I have five days in which to go to two exercises classes, pt, two doctor appointments, 15 hours of work for one job, 12 hours of work for a second job, and clean the house. Plenty of time. And I have to do my stupid exercises every day.

My back hurts. I might be fighting a cold. I'm tired. I want to get through the holidays and not gain weight. My ankle hurts too. And then there is my elbow.

After Christmas day, I still have to make three baskets of cookies and Chex mix as gifts for family members. But I'll worry about them next week.

Was Christmas different before cancer? I don't know. Is there a sense of gloom over life now? I don't think so. Yesterday I talked to a friend's husband who just finished chemo for Stage IV colon cancer. He is feeling optimistic. I don't think there is a gloom in his house either.

I should be meeting at least one friend for a walk this afternoon. I also have a pot of bean soup on the stove that should be ready by lunch. Right now I'm in my flannel pjs, slippers, and watching TV with my husband.

Saturday, December 18, 2010

Hospital amenities

What is really important when you go to the doctor or are hospitalized? We want smart medical professionals who are up to date on all the latest research provide the latest standard of care. Sure, yep. That's it.

NNNNNOOOOO! Well that's part of it. But we also want waiting rooms which are comfy, provide something to read or a TV to watch, and provide ample seating so you never have to sit next to someone who has offensive body odor or cant stop telling you about their medical ailment.

When waiting to be seen by a medical professional, a room with a door that closes, as opposed to one of those curtain things that don't go to the floor is nice. A chair to sit in instead of perching on the end of the exam table is good as well. Maybe a magazine or two. And a diagram of inside portion of the body part that will be inspected so you can pretend you know what is wrong with you.

As an inpatient, we want single rooms, with a bathroom and shower that you don't have to share. Edible food, TV, Internet, privacy, quiet, and other amenities. I mean a queen size bed would be nice but I don't think those will show up in hospitals anytime soon. A window with a view would be a nice touch as well.

Hospitals are finally figuring this out. The problem is insurance and medical care pay for the procedures and medical professionals' time. They don't pay for interior decorating. But if patients would prefer to be treated in a nicer environment than one with cinder block walls and a cement floor, they can increase their volume and cover the costs easier.

Me. I go to a hospital that is a teaching hospital and only has private rooms with your own bathroom and shower. You wouldn't catch me going anywhere else.

Friday, December 17, 2010

In the coulda, shoulda, woulda category

Here's a new one on me. People who do better in school, are healthier. So if I had been a better student, would I be healthier?

In high school, I was not the academic. Can I just leave it at that? I didn't correlate the 'go to class' part with the 'get good grades' part. Well, not all the time. But I did relatively well on my SATs. It was actually a highly ranked public high school. I studied overseas twice in the summers. I did graduate, barely. The barely part was my failure to like wearing one of those nasty gym suits and attending gym class.

Then I took a year off - one of the smartest things I did and worked in a restaurant - where I really decided I wanted to do more with my life. I did go to a small college in the midwest which less than half the size of my high school. I actually studied there. But grades were tough. You could talk to seniors who had never gotten an A, even though they had studied. A's were rare. Failing a class wasn't that unheard of. I dropped a class once because I couldn't hack it - the professor was rumored to fail 1/3 and I wasn't doing well so I dropped it instead of failing.

This is the long way of saying I ended up being a B student with crappy health. So if I was an A student, would I be healthy?

Thursday, December 16, 2010

The Primary Care Physician

I am told that a primary care physician is supposed to manage your care. I'm still waiting to see this part of my medical care. I assume this is a similar role to that of my pediatrician who was interested in all parts of my care and sent me for throat cultures and things like that but basically took care of all of me.

I think I am a bit different then most. When I was young I went to my pediatrician and then in college with my first cancer diagnosis, I had an endocrinologist for my main doctor... I went to a gynecologist too. But medical standards changed somewhere in there and everyone got a primary care physician. My endocrinologist retired and I needed a primary care. I found one by taking the advice of someone.

My primary care has been my doctor for probably close to ten years. I don't feel very attached to her. Actually I kind of feel remote from her. Her schedule is very busy and its difficult to get an appointment with her and not her nurse practitioner.

When I was diagnosed with breast cancer, it was actually following a mammogram she had sent me for. I was instantly enfolded into the oncology unit's team of doctors with a social worker, medical oncologist, surgeon, radiation oncologist, and a bevy of nurses. I never heard from my primary care. I even stopped by her office one day while at the hospital for one of my innumerable appointments and left her a note. I never heard from her.

Now that my life has somewhat calmed down, I still don't feel she has a handle on or manages my health care in any way. I haven't seen her in person for a few years - just her nurse practitioner or other doctors in her office (mostly due to scheduling reasons) when I needed something. It is time to move on and find a new primary care.

I have made a more focused effort this time. I have asked around for references. I have set a few goals that I want - younger than me (so she won't be retiring while I still need her), female, willing to manage my care, and calm in the face of medical disaster after medical disaster... I called and asked to switch my primary care and have an appointment to see her for a physical in May.

But the problem is, every time I go to the doctor for anything, they always ask who is my primary care. So now do I say my old one... or do I say my new one - who I won't see for months? Or do I try to explain the situation to whoever asks each time? So complicated.

All I know is I want a primary care physician who when I see her actually reviews what is going on with me and has some grasp of the continued issues I face.

Wednesday, December 15, 2010

What would you ask cancer?

Yes a real question. Submit your video question by noon today and you may get an answer soon on CNN iReport.

A few days ago, I blogged about the new biography of cancer. Now questions to ask cancer can be asked at iReport. I don't have a video camera (and hate the way I look in pictures) so I won't be participating. But if you have a few moments and a video camera this morning, feel free to participate.

However besides the typical 'why me? question, I would ask:

- Why do you survive through chemotherapy sometimes and not others? Why are you mutating and continuing?

- What do you think of how you are treated currently? Are the current protocols difficult for you to survive through?

- What is your weakest link? I think of you as a vampire and want to have a silver stake put through you. What would work on you? How can we make you extinct?

I think that's it for me. But what would you ask? I would love to know.

I think I need a copy of that book, "The Emperor of All Maladies: A Biography of Cancer" by Oncologist Siddhartha Mukherjee. Library or gift to myself, I dont know. I can get it for $17.55 on bn.com. Hmmmm....

Tuesday, December 14, 2010

Its clearly a conspiracy

Estrogen - good, bad, maybe, maybe not. Soy, yes, no, maybe, maybe not. Once you have had breast cancer, you need to be careful about estrogen and soy (which has some estrogen) and every time you turn around, they try to confuse you some more.

Here is the latest article which says estrogen may protect some people from breast cancer. Routinely women used to be given hormone replacement therapy, which included estrogen and progesterone, to relieve menopause symptoms. Then it was determined that HRT actually raised the risk of breast cancer. Once it stopped being prescribed, breast cancer rates started dropping.

A breast cancer diagnosis also provides information for the patient and doctor if your cancer is Estrogen receptor (ER), progesterone receptor (PR), and Her2 positive or negative. If you are ER and PR positive, you should benefit from chemo. If you are Her2 positive, you can also be treated with Herceptin.

However if you are ER positive, you need to avoid soy (until another study comes out to tell us differently) and estrogen as the current belief is that an ER positive cancer will feed off the estrogen in soy or in medical treatments.

If this isn't confusing enough, then they change their minds and a new study comes along and say the opposite. So clearly its a conspiracy to keep us all confused.

I have ER positive, PR positive, and Her2 negative breast cancer. I hate tofu and because of this confusion I can use it as an excuse not to eat it. I do eat somethings that have tofu in them - like Hot & Sour soup which I eat a few times a year. But now I can skip tofu as a rule.

So you may call me confused but I don't have to eat tofu.

Monday, December 13, 2010

Lack of brain

So I claim chemo brain regularly. My husband agrees. Sometimes he even suggests I might possibly be a space shot. Today's newspaper has an article about memory loss as affecting older adults (not me) and what is normal and what is not:

What’s normal and what’s not
A memory problem is serious if it affects your daily life.

- Sometimes forgetting names or not being able to recall a word.
- Memory lapses that include walking into a room to retrieve something and then blanking on what that was.
- Forgetting where you put the keys to your car. (Forgetting how to use the keys is not normal.)

NOT NORMAL
- Forgetting how to do things you’ve done many times before, such as cooking a dessert you’ve made for years.
- Repeating phrases or stories in the same conversation.
- Unusual trouble making choices or handling money.
- Permanently forgetting the name of a close friend or relative.
- Frequently misplacing something such as a purse and putting it in inappropriate places, such as the fridge.

SOURCES: American Academy of Family Physicians, US Food and Drug Administration, Dr. Eliza Shulman


I asked my husband to read this list. He says he believes I am in the normal range. But let me tell you my side:

- Last weekend we replaced the screen door on our house and switched it so it opens from the right, not left. I still try to open it from the wrong side.

- I open the refrigerator when I was going to put something in the microwave.

- I routinely cook on an off burner.

- I can only find my car in parking lots because I can make it beep from a distance.

- Every day I have to go look at what I blogged on yesterday before I can post today.

So as you can see my brain is a sieve. But I am normal. So I can feel better. But still I claim chemo brain so the expectations are not set too high.

Sunday, December 12, 2010

Owning 'For the Cure'

The Komen foundation now wants to own the words 'for the cure'. I think that's wrong. They don't own the words. No one does. Its part of the English language.

In real life I am a marketing person (not just a cancer person) and I understand the reasons for branding and positioning and owning your name etc. That makes sense. You don't want to open ABC Dry Cleaning and have someone else in the next town opening ABC Dry Cleaning. People would get all confused. If the cleaners in the other town lost a pair of paints, you would get tainted by their reputation. Do you use Kleenex or do you remember to say 'facial tissue'? See how confusing that is?

The Komen Foundation should not own 'for the cure' because their activities are not for the cure. They raise awareness of breast cancer, and do almost too good a job of it. I do see funds donated by the Komen foundation for awareness but not as much for research. I don't know. I could very well be wrong. But I don't think of them as a big provider of research funds but of awareness and support funds. Now you could argue that dollars spent for awareness and support could be construed as helping with the cure for cancer.

But there are companies with all sorts of logos and brands and slogans which are trademarked and registered. Sometimes its right and sometimes its wrong. But all we want is a cure.

Saturday, December 11, 2010

Part 3 of my VERY long day

Yesterday, I was supposed to be smart and stay home and work quietly and recover from my VERY long day. I was STUPID (worthy of capitals - and that was after I was a MORON because I forgot to pay the mortgage which I immediately rectified) because I didn't do what I was supposed to do.

In the morning, I decided that since I had finished stamping the latest newsletter from my nonprofit job, I could put all 1700 of them in their 3 boxes on a two wheeled cart and get them into the car to drive them to the post office and then out of the car and into the post office. That wasn't so bad as I lightened the boxes by taking some newsletters out when I had to lift them in and out of the car and was not above dragging them.

Next I decided that with my abundance of healthy feelings I was in good shape to go to Costco for one last time before the holidays (so I wouldn't be forced to go to the grocery store to buy things at retail prices). I made a point not to get anything heavy. I meant to put on my wrist brace before leaving.

However, there was the wrestling match with the toilet paper. (Yes, in public.) I needed to buy TP and this means at Costco or other warehouses you get the giant 24 rolls in a big plastic wrapped bundle. First round, I tried to fit it on the rack under the carriage and it only sort of fit, even when assisted by my foot. Second round, I had to pull the stupid TP bundle back out to put in the giant bundle of paper towels behind it. Again, I had to assist with my foot and it still didn't really fit but seemed wedge. Third round, the damn TP bundle fell out in the middle of the cheese department. I gave up and threw it into the main part of the cart. Fourth round, I decided not to purchase the gift basket I had in my cart, under the *()&^^%% TP bundle so I pulled it out and got the gift basket out and then threw the DAMN bundle back in. Fifth round, I had to wrestle the (*&^%%^ bundle onto the counter at the checkout. Sixth round, into the back seat of the car where the *)&*(&*^^% thing stayed until my husband got home from work. (I should have gone to the grocery store and purchased individual rolls but no I am cheap.)

As a result, my back hurt, my left lymphedema arm hurt, and my right tennis elbow hurt. My husband cooked dinner - including making brownies. Today, I can't pick up my coffee with my right hand again.

On Tuesday I shall have to admit to my physical therapist that I lost the battle of the toilet paper.

Yesterday I also talked to the lymphedema people yesterday to find out that my rash from the compression sleeve should be treated with hydrocortisone (which it is) and if it does not get better soon I should call my primary care or go to the walk in clinic or even the ER if needed. That was not the message I wanted to hear. (I will not go to the ER unless there is dripping blood in significant quantities.) In the meantime, I will try wearing my lymphedema sleeve inside out so I don't continue to irritate the (DAMN) rash.

Today, I am meeting friends for a walk and will not carry anything heavier than my water bottle.

Friday, December 10, 2010

Recovering from a VERY long day

Last night I returned home about 9 pm with back and hip pains, exhausted. I had PT in the morning and got to work. It was extremely busy there as many colleagues were in software training but I was relatively productive. Then I went to a small holiday party and had a good time. Finally when I got home, I took a pain pill and slept all night.

Today I will take it easy and work from home and go to my pain support group for another small holiday party. The question - should I make brownies or not to bring with me. It will be a recovery day. That is my problem now I have to take it easy for the day - the price I pay for a long day.

I am okay but very achy this morning. I took my thyroid pill and will wait until its been an hour so I can take a pain pill - I can tell this will be my requirement for the day. I think the cat will be happy because I will be home and he will follow me around and snuggle. Think of him as a mobile heating pad.

And I have to call the damn lymphedema clinic today. Last week the lymphedema therapist told me because of my tennis elbow on my right, I should wear my sleeve on my left as I am probably using it more to compensate. And I got a stupid rash from my sleeve!!!! Grr!!!!! Rashes on lymphedema arms are kind of serious... Triple grr!!!
Okay, I am done whining. I am not profound this morning as I am tired.

Thursday, December 9, 2010

I am faced with a VERY long day

Today I have a VERY long day - worthy of capitals. I have a 7am PT appointment, followed by work, followed by a Christmas party. I should be home by 8 or so. To many of you that is not a long day, never mind a VERY long day. For me, exhaustion will set in and tomorrow I will have to take it easy as a result.

Basically, between all my ailments I have no ability to go out for more than a few hours at a time. Work is not that bad because I sit in a big, ergonomic chair and get up periodically to go to the restroom, printer, copier etc. I go home and I am tired. But I can't work two full days in a row. Tomorrow I will spend most of the day at home - except my chronic pain group (that I haven't been to in months).

My life has changed. And won't unchange. Yesterday I successfully made by back, both hips, left shoulder, right (tennis) elbow, and ankle all hurt. But I was very productive with work. So I am not sure how today will be as a result. It will be long.

Its a difficult new reality to cope with. I have to plan going out. I have to make sure I allow myself time to take it easy daily. My new exercise class has definitely had a positive impact and I feel better in and more flexible which is nice. But I can't do some of the exercises because they involve weights or twisting. That won't change either. (The cat is lucky I can still pick him up as he gains weight but I do it daily to make sure I still can.)

There is being tired and there is fatigue. Tired is how I feel now when I have to get out of bed. Fatigue is being lethargic and needing a nap when you haven't really done anything. I'll have both later too.

Well, its 6am and time for my day to start (and do all my (damn) exercises) and I am sure I have more pills to take as well.

Wednesday, December 8, 2010

Face it they were stupid

One year ago there was a lot of hoohah about mammograms not needed for women in their 40's. (Hoohah is a highly technical term for a too much media coverage upsetting a lot of people.) It was then that the morons (and I use the term loosely) said that mammograms were not needed until age 50.

Well, in the year since, we have learned that they were wrong. But there are still some sore feelings. Women feel misled and confused. Will my insurance cover the screenings? This was one of the many questions asked.

It now shows that these people who came up with this statement were stupid. They didn't explain clearly and by the time they went back to clarify it was too late. They were stupid.

In the meantime, we have learned not to believe everything you read or hear. And that just because one study tells us one thing, it doesn't mean it was correct.

Tuesday, December 7, 2010

Dying, death, and dignity

In case you missed it, the latest overblown, over hyped, news story is that Elizabeth Edwards has ended treatment and is surrounded by family at home with no further treatment available. I don't understand why people feel the need to rehash this and comment, and discuss, and reanalyze her whole life including her husband's political career and infidelity. Please leave her alone and let her die with dignity, on her own terms. Her wishes must be respected at this time.

When it is my turn (in the very far future), by then I will have written out what I want so no one can overstep them. You can be sure it will include lots of privacy and dignity and painlessness. It will include those who I choose - but definitely my husband. It is my dream that we will play scrabble together, tell jokes, and laugh until the end surrounded by flowers. But it will also include dignity.

There is nothing more dignified than death. We will all get there sometime. It is not a time for questions that cannot be answered. It is not a time to think of regrets. Let those at the end of their life have the dignity.

Monday, December 6, 2010

Trying something new

I am trying something new in the unending fight to lose weight, feel (and look) younger, hurt less, and just be darn better. I joined my exercise program, a/k/a the Pink Program. I whined about it a few weeks ago when I had homework that I didn't do.

Now that I am a few weeks into it I feel better. I am hesitant to say much about how much better I feel so as not to jinx myself. I am definitely more flexible. I feel less stiff. This is good. Now if only the scale would go in the right direction a little faster I would be even happier.

One of the biggest advances I have felt is my back is having few flare ups of pain, until yesterday where it was VERY bad. I was in my pajamas and pink fuzzy slipper socks by 530 pm. That felt good. But every fifteen minutes or so I needed a mini massage by my husband. But I have drugs for that.

My tennis elbow is a bit better but I can tell you about repetitive strain in my life - chopping vegetables. This could tamper with my husband's eating habits. He might even have to help cook more often. But it should go away. I have too many other things that won't go away.

If I have to do the exercises from the Pink Program every day for the rest of my life to feel better I will. I was already doing lymphedema and back pain exercises but the PP exercises seem to be taking care of those areas in terms of resolving pain. But I still need to take all my (damn) pills. And go for walks.

Sunday, December 5, 2010

Cancer = monster

Cancer is a nasty monster, like the one hiding in your closet or under your bed as a kid. Is it going to get you tonight while you are sleeping? Or if not you, your mom and dad, your best friend, your siblings, your pet? Who is next? You would never know and wake up scared...

Cancer is a monster to Aidan who is drawing them through his treatment. He has help selling them on etsy for $12 each.

I think this is very cool. He's five years old and still in the hospital under going treatment. We all do things to help us cope. Obviously I write my blog and that's my way of coping. But he's five. How much does a five year old understand about cancer? How much do any of us understand about cancer?

Saturday, December 4, 2010

Appearance counts too

As anyone who knows me can tell you I am not a fashionista. I mean I wear something that is clean and relatively unwrinkled (I don't iron) add some perfume (the most important thing) am ready to hit the door. I usually remember to brush my hair again just before going out the door. Make up is a slim possibility and periodically is visible. But that's on the outside.

There are other issues. I have had 8 surgeries. Most of them have minor scars and my body has returned to normal. But my breast cancer surgeries who were almost immediately exposed to radiation, are the most disfiguring (I think that's the right word). We'll just say I am reshaped in certain areas... I also have a nice set of internal scar tissue that quit easily mimics an unwanted recurrence.... Lots of lumps and bumps. No one told me I would end up this way. Maybe if I had known, I would have looked at other options in a brighter light.

Evidently I am not alone. There has been (yet another) study that says many women who were treated for early stage breast cancer are unhappy with their cosmetic appearance post treatment. They never tell you this part. They tell you about lymphedema. They tell you about staging. They tell you about chemo and radiation and nausea and going bald.... But they don't tell you that you will look different afterward. That's a big fat oops! But at least I am not alone.

Friday, December 3, 2010

Thoughts on chaperones

When I hear the word 'chaperone', I think of young ladies in the 19th century who were not allowed in the presence of a male who was not a relation without a chaperone. Or of a parent or teacher who chaperones a school dance. Or of an escort through a business office to make sure the visitors don't stray.

But what about medical chaperones? The kind who is in the room when a male doctor does an exam on a female patient. Do we need those? I don't know. If I am wide awake and able to speak up if I feel the doctor is inappropriate, I usually am comfortable without a chaperone in the room. I don't feel this as much of an issue. Also, usually if there is any kind of internal exam often there is someone else in the room to pass instruments, swabs, and other thingies.

I think I am more concerned when I am sedated and helpless and couldn't speak up. I think I assume that while I am unconscious in surgery, there are multiple people pretty much at all times and while I am in recovery, waking up, there are nurses near by and you are openly visible as they want to monitor you.

If I am lucky enough to be hospitalized, I keep my room door shut at all times. I hate it when people walk by and look into my room. Now does this mean I am taking a risk because someone in passing can't see in to make sure I am safe?

I think this isn't just a matter of patient safety but also of comfort level. I need my privacy to be respected. I prefer to be in private and am usually comfortable that way. But on the other hand, what about safety too? Where do you want to draw the line and what are your expectations? You decide.

Thursday, December 2, 2010

Rats!

(Feel free to replace the title with the appropriate word of your choice which equals frustration).

Yesterday I went to my exercise class and talked to the instructor about my elbow. She said she wanted me to talk to the physical therapist this morning about what I should and shouldn't do. Then I went to the monthly breast cancer support group I never get to because the lymphedema specialist specialist was there. She said I need to wear my (damn) sleeve again until my right arm is back to normal AND I need to be extra careful not to stress my left lymphedema arm until my right tennis elbow is under control.

My husband is gloating because he was telling me I should wear my damn sleeve and he has been proven right. That's not the frustrating part (even though he didn't remember to notice my hair cut yesterday even while prompted). The frustrating part is by day I wear my (f)ugly lymphedema sleeve and by night I get to wear my stupid wrist brace for my tennis elbow. Now I am accessorized 24/7.

Then yesterday I was exhausted. I don't know why but I ended up taking a nap and then even going to bed early. Grrr!

Today I am off to work and will attempt to make it through a whole day. I need to talk to the PT people (after I scrape them off the floor when I give them my medical history and the list of don'ts from doctors) about how the pain kicks in and I can't do much of anything.

Just another post cancer day. Grr, grr, grr.

Wednesday, December 1, 2010

Could this be a hint of future success?

As we are in the long term war on cancer (that was started 40+ years ago - are we headed for another Hundred Years War?), they are finally figuring it out. To win a war, stop focusing on the soldiers and take out the generals who are in charge. Sounds kind of like a 'doh' situation to me.

Basically generals are cancer stem cells, soldiers are regular cancer cells. Most commonly available cancer treatments go after the soldiers and don't kill off enough generals. Well now this is changing.

I don't want to get in to a debate here about embryonic stem cells because this is not the place. Stem cells can come from umbilical cord blood or from adult bone marrow. I have several friends who have had stem cell transplants using bone marrow and one person who had a siblings umbilical cord cells. It seems that the results are showing some progress. This makes me happy. I also like the fact that it is being used and not just another 50 year test.

Maybe I'll be optimistic on this.

Tuesday, November 30, 2010

But I don't play tennis

I have tennis elbow. The last time I recall I played tennis was when I was 9 years old and we spent a month or so on Cape Cod in a rented house that had a tennis court nearby. My mother attempted to teach us how to play. I was awful. I don't play. Maybe I have delayed onset tennis elbow but that would be really delayed onset (even though I am only 29).

So I went to the doctor yesterday but first I had an x-ray. When I finally got to see the doctor, I was asked what my pain scale was - I said about a 5 or 6. The doctor said I had a perfectly normal elbow and by pushing on the sorest parts of my elbow he told me I had tennis elbow - which he used a big fancy name for that I can't even remember and added that it is a repetitive strain injury. He suggested that I do behavior modifications like switch my mouse to my left hand - I did that 15 years ago due to my ulnar tunnel issues so I had that one covered.

In addition, he said that treatment options were a cortisone shot, physical therapy, and a brace to wear at night. I said I would take all of the above. He injected my elbow at its sorest point with a 'tiny' needle (that wouldn't hurt any more than a flu shot - liar!) and rubbed it all around to make sure the cortisone went everywhere.

He gave me a very stylish brace to wear at night but put it on me to show me how to wrap the velcro straps in case I have very severe chemobrain. Then he wrote out a prescription for physical therapy but told me I would have to go to an outside PT facility for the treatment. I wasn't too sure I would like that but then it turns out the only facility for this is the one that is (I'm not making this up) three blocks from my house. I can walk there slowly in under five minutes. My first appointment is Thursday morning.

Upon leaving the hospital I kept the lovely wrist brace on and went to pick up the snowblower that was out for repair. The men in the repair shop took one look at my wrist brace and said 'can we put this in your car for you?' Now that is a very useful brace.

Then the bad part of my day started. I met a friend for a walk and my arm got progressively sorer. I went to meet my boss and check out a conference location and it got even sorer. Finally I got home in a lot of pain, took a pill, and asked my husband to make dinner. It was sore enough that if the cat rubbed on my fingers the wrong way, I was off the charts in pain.

Apparently, after several dozen cortisone shots in my back and hips, I have experienced the most common side effect - the cortisone flare. Who knew? But some website knew and I quote 'the most common side-effect is a 'cortisone flare,' a condition where the injected cortisone crystallizes and can cause a brief period of pain worse than before the shot.' A brief period has lasted most of the night. I iced it as instructed, took drugs and pouted.

Today it is somewhat better. I have been awake since 1 am. I even got out of bed to look for my night time wrist brace which I conveniently left in my car.

However, today I can move my arm, wiggle my fingers, feed the cat, pour myself a up of coffee and am optimistic that I will be able to go to work and be semi functionable.

On the plus side, its not cancer, it should go away in 4-6 weeks, I can flash my wrist brace for help with things I don't feel like doing, and my husband cooked dinner.

Monday, November 29, 2010

Wanted: One general, all purpose doctor

I was talking with a friend yesterday about life with ailments and how we seem to spend all our time running from one specialist to another. We both want a general all purpose doctor who is a combination ankle surgeon/elbow surgeon/medical oncologist/breast surgeon/radiation oncologist/radiologist/primary care/psychiatrist/psychologist/and whatever else you need. You go see them and they say pouf and you are all healed. None of this wasted time going from appointment to appointment. Wouldn't that be great?

Or better yet, a single cure for everything so we wouldn't need the doctors in the first place. It never hurts to dream does it?

Today I am going to break in a rookie. A rookie doctor that is. He has never met met before so I go in and say 'my elbow hurts, I've been icing it which helps a little but I am already on an anti inflammatory and multiple pain medications and can we talk about the rest of my medical history as well and then you can tell me how soon you can make my elbow better. Okay? Thanks.'

He's a young doctor. In his picture, he looks younger than some of the clothes I own. These young doctors always seem to want to know my complete medical history. I can only remember it if I go chronologically counting the arrival of each surgical scar. Then I scrape them off the floor and start talking about the non surgical issues. Then they excuse themselves to go read my chart a little more. Then they come back and say 'wow' and give me some solutions.

If I had one all purpose doctor, I wouldn't have to go through this ritual. Please!

Sunday, November 28, 2010

A new thought

Here's a new thought:

'What it means to win the war on cancer is not to eradicate cancer from our lives, but rather to imagine extending what I call this cat-and-mouse game with cancer as far as possible while retaining as much dignity of patients as possible.'

If you think about this for a minute, we have been fighting the so called war on cancer for over 40 years and haven't gotten there yet. So maybe instead of just focusing on the cure, but what about extending lifespan and retaining patient dignity as well. The author phrases it as though it should be done instead of research for a cure. I don't completely agree with him but I like the thought.

Researchers should be empowered on two sides here: one group work on finding a cure for cancer and the other group work on extending lifespan of cancer people and retain patient dignity. Perhaps both sides are equally important.

These thoughts come from a new book which I think I will read by Oncologist Siddhartha Mukherjee, called "The Emperor of All Maladies: A Biography of Cancer". Any new thoughts on the cancer interest me. In this book he writes a biography so that we can understand and dissect it better.

He states 'We write biographies in order to understand, to decipher the psyche, to enter the personality. In a sense, we’ve been trying to do this with cancer for nearly 4,000 years.' Perhaps this will help make sense of this disease. I can't completely agree with him but I think he has a good thought.

Saturday, November 27, 2010

Live out your dreams

There are people around us who inspire us. The latest in the line is the boy who at 11, had a brain tumor with a poor prognosis. He now plays foot ball. It was important to him to play because he didn't want to wonder what his life would have been like if he didn't play. And he wants to inspire people and prove anything is possible.

Another one is Jothy Rosenberg who with one leg, is an amazing cyclist. His blog is entitled 'Who says I cant'.

A bit more of a canned version of this is the movie 'The Bucket List'. Just because you are old and dying of cancer, doesn't mean it has to be dull and boring. Do everything you can while you still can.

At 19, I was told to go live my life as I should (not a good word in medical terminology, 'would' would have been a better choice). Then followed a long lecture of what not to do and to do - get plenty of sleep, eat a healthy diet, continuously monitor your health, get regular check ups, blah, blah, blah. Well I was in college, I wanted to stay up late and drink beer with my friends.

I thought about it and came to the decision that while I wasn't going to play in traffic, I was not going to live a boring life. I have traveled internationally, I have studied abroad, I skied off the headwall in the Rockies, snowshoed up mountains, bike riding, roller blading, went on Club Med vacations, climbed mountains and more. Next year I am going to Iceland. I can't hike, ski, snow shoe, roller blade, bicycle, climb mountains any more. But I can still walk, take pictures, experience a new culture, and have fun. Because I can.

Then when I come back from Iceland, I'll have to plan our next trip.

Friday, November 26, 2010

Facebook

When I was diagnosed with breast cancer, I looked all over online for support and information and found the message boards on the Komen website where I hopped on and started reading and asking questions. Then I saw 'Crazy Sexy Cancer' and read the book and found Kris Carr's website, Crazy Sexy Life, and joined up and started reading. Somewhere along the line, I joined Facebook and became pretty active there. I also started finding lots of support, reconnecting with childhood friends, and wasting a lot of time.

Then the Komen site changed its message board software which caused all kinds of problems and a bunch of us drifted over to Facebook and stopped going to Komen. Then someone on CSL moved to Facebook and now everyone is on Facebook. I mean the world is on Facebook.

I am on Facebook a lot. Probably too much but that's another story. Facebook is a microcosm of the world - everyone has different opinions, thoughts, etc. People play games and ask others to play. People want to be friends and then more and more. (How did I end up with 288 friends?)

Somethings about Facebook are irritating. I find its constant upgrades and improvements a pain in the butt. Stop moving things around!!! And I won't even talk about the security changes which I think they do just to give everyone something to post about.

I also I am not sure I am a big fan of the requests to post this as our status to show your support for this cause. You see this a lot. I never do it. Its just like forwarding chain emails. (I do admit to forwarding some chain letters back as a teenager when they involved photocopying and sending to the other side of the world in an envelope with a stamp.)

There was one this morning that made me think for a second:

'Every person has 1000 wishes, a cancer patient only has one: to get better. I know 97% of you won't post this as your status, but my friends will be the 3% that do, in honour of someone who died of, has had or is fighting cancer. :( x'

Then I thought, no I can't post that because we don't want to get better. We want a cure.

Thursday, November 25, 2010

The scandal of it all!

Egad! Apparently there are cases of cancer that are treatable if found early but unfortunately are often diagnosed too late! Well, some times cancer progresses a lot faster than thought. Or even if mammograms are done regularly and there are iffy areas, they are given a clear until next year. (By iffy areas, I mean things that are noted as being different than expected but not a clear sign of cancer.) Who knew??

For Pete's sake (whoever Pete was, his name is used a lot), I mean really. This isn't breaking news. Medicine is not an exact science. People should get regular well being tests but it doesn't mean every case of cancer will be found at early stage. Cancer is sneaky.

Don't put us cancer people on the woulda, shoulda, coulda road. We try. Don't fill us full of regrets and unhappiness we have enough of it all ready.

Wednesday, November 24, 2010

My cat ate my homework.


I forgot to read my damn free book for my expensive exercise class. Perhaps I will plead chemo brain. Or maybe I will try to read it this morning. It is going to be a busy morning. A plumber and tiler are coming over at 830 to look at the work we need done for our minor kitchen/bath rehab that we will do in January. We need to make the house look civilized so they don't think we are total slobs between now and then. It doesn't help that we are watching TV in our pajamas.

I did not sleep well last night either. I fell asleep on the couch and woke up at 1 when I went up to bed. (My husband claims he tried to wake me up.) Then I woke up again at 4 and couldn't get back to sleep so I gave up and got up. I made three of my four pies already. I'll make the last one later as well as the sweet potatoes.

I was talking to a friend last night and thinking about what I have to be thankful for - husband, friends, family, what is left of my health, that I live in a safe part of the world with access to clean water and healthy food. I guess that's about it. I mean I could come up with some schmaltzy sayings or make a giant list but that about sums it up.

Tuesday, November 23, 2010

I have homework to do!

Last Monday, as in a week ago yesterday, I started a new exercise class. Its one of those with the big price - free if you had cancer (in this case breast cancer). It meets twice a week on Mondays and Wednesdays. I knew I would miss last Wednesday and yesterday but will make it tomorrow. I was told that you get two free books with the class that contain all the exercises and you need to read a chapter a week in one of them.

Well, I have never been very good about homework. I worked hard in college but fun interfered with studying so I ended up with a decent grade but not magna cum laude by any means. After college I did get two post graduate certificates and did do my homework but maybe now I am off the homework study thing. I can't remember to read the damn book. To be fair I once took the book out the library and eventually it made its way back unread and overdue. But I do mean to try to read the damn thing this time. Especially since now I have my free but expensive copy.

Sometimes this free if you had cancer thing bugs me. Everyone means well, but I find the price too high personally. There are free weekends, free t shirts, free dinners, free classes, etc. But they weren't free to all of us who receive them. They come at a very high price. Personally while I appreciate the thought, I would rather not be eligible.

Monday, November 22, 2010

Get me out of here

So you had surgery and as soon as the really feeling bad part is over, you want to go home. Why stay in a 'pseudo-hotel' where you never get a good night's sleep because of noise and interruptions - I do not know why they insist on taking blood samples at 5 am. The food is not that great and frankly you'll sleep better in your own bed.

Hospitalization is often needed after surgery. Usually the hospitals send you home sooner as opposed to later but sometimes you need to stay hospitalized if you are in traction or have mobility issues or still have significant pain levels or whatever reason. Even after day surgery, are you ready to go home?

But is your home equipped with everything you need? What if you broke your leg and live in a split level? What if you live alone and don't have anyone to help you? What if you have a drain which needs to be checked twice daily? Are you equipped for all this?

I have been through two variations of this. I had day surgery on my knee to clean up a skiing accident. I lived by myself in a ground floor apartment. My parents took me to and from the hospital and a friend came and spent the night as I was not supposed to be alone during the first night after surgery. More recently I had a hysterectomy and was sent home after five days as an in-patient and was told stairs once a day only for the first two weeks. I was lucky that we live in a house that had everything I needed on the first floor. I would go downstairs before my husband left for work with clean clothes for the day. I could shower downstairs, eat, sleep. Then when my husband came home I would go back upstairs. That worked fine. After my axillary node dissection, I had a drain that a visiting nurse came in a checked every three days and my husband, who has a stronger stomach than I, would clear it out twice a day (yuck).

I was lucky in these that I was prepared and okay for my stay at home. I could easily see how others would have problems with this. If I lived alone after those two operations, things would have been much more complicated.

But there has never been a time at a hospitalization that I wanted to stay in the hospital. I am always the one to say 'get me out of here!

Sunday, November 21, 2010

Decision making

I make my own medical decisions. I do. I make decisions about lots of things (my husband says we always end up doing what I want but that's another blog post) but I feel comfortable making decisions. When it comes to medical decisions, I usually make a decision when first proposed to me and do not opt to go home and 'sleep on it' or research the hell out of it.

Dr. Berk had an unfortunate bike accident that resulted in a spinal cord injury. He partially credits his return to health as a result of the involvement of his family in the decision making process and how it made them stronger as a family.

Granted, the decisions he dealt with are different than the ones I have been making. I often make my own medical decisions, sometimes I consult my husband but usually I just act. Its my body and I get to decide what is best for it. Last year, when my husband was dealing with the fact that they couldn't get clean margins on his polyp removal, I bit my tongue and let him decide what he wanted.

Now are we wrong? Should we consult each other on each decision? We did get married until we were in our 40's so were used to making decisions on our own. We communicate but make our own decisions. However we are about to under go so house renovations - these decisions are under a microscope here as to what we want to have for a kitchen counter top, kitchen floor, how funky the bathroom tiles can be, etc. This is a different kind of situation for us.

I think if we can accept each other's medical decisions, we are okay with how we handle things. Home improvement is another story.

Saturday, November 20, 2010

Dont forget them too

There are cases of childhood cancers where mom and dad gather around and hold hands and take their child back and forth. Its a horrible time as parents are afraid their young child will die. Parents should never see their child suffer through chemotherapy and die before them.

There are cases of cancer of older adults - over 40 - who account for the vast majority of cancer cases in the US. The are the expected age group to get cancer and are screened and tested for it through mammograms, colonoscopies and PSA tests.

Then there are the cancer cases in young adults, 19 to 39. The group who are likely to have little or no medical coverage, less likely to go to the doctor regularly but still get cancer. Cancers that are often discovered late because of the less frequent medical visits. They also feel too old to get their primary support from their parents and look to their friends for support.

Its only in recent years that young adults have been noticed in the cancer community. In the past, they were offered the support groups and other resources that were 'for old people' and told to go about their lives after being blasted with a crisis that basically shakes up everything and causes a lot of trauma in their lives.

There is one great organization that focuses on this 'lost' generation - that is i2y. But now there is another group called Focus Under 40.

I call them the lost generation because if you are between 19 and 39 and have cancer, you are young and dreaming of your life and making a career. You are starting on the road of life and it just turned into a roller coaster that only stops at the oncologist's office. We should not forget this lost generation who are coping with cancer as well.

I know because I was one. I had cancer the first time at 19. The doctors said I should go about my life. There was no support. This is one area where we need to focus our efforts to support these young people. I am very glad to see these two groups and hope there are more to come.

We should not forget them

Friday, November 19, 2010

In the category of I clearly do not have enough medically wrong

A few years ago my brother made a sarcastic brotherly comment about me running out of body parts to have something wrong with them. Well apparently I forgot about my elbow.

Yesterday morning, I discovered I had a problem: It was painful to drink coffee because my elbow hurt. I got to work and told my co-workers I had a drinking problem because I couldn't drink coffee (or herbal tea or water or anything else). It only hurts if I bend my elbow or attempt to pick anything up or twist my arm.

A long time ago - maybe 15 or more years, my right wrist/elbow was giving me a problem. I saw a specialist and he told me it wasn't carpal tunnel in my wrist but my ulnar tunnel in my elbow. He told me not to lean on my elbow, not to sleep with my elbow bent (with my hands up by my face), and other behavior modifications. I even switched to using the mouse with my left hand (actually its kind of cool because I can take notes while using the computer). It seemed to go away.

Over the past six months or so my elbow has been starting to bother me again. I took the mature root of ignoring it (my inner two year old squinched her eyes shut and screamed 'no, no, no' at the idea of another medical ailment). I assumed it was a result of too much computer and too much knitting and crocheting. I cut back on the knitting and tried to be good about computer stuff. It hurt off and on and I just coped and pretended it didn't. Basically, I ignored it. Of course, this is my right arm, as opposed to my left arm with lymphedema issues.

Yesterday it was very painful while driving to work and drinking coffee. I gave up on the inner two year old and broke down and called my doctor. I saw the Physician's Assistant who is referring me to a specialist. I already take pain meds and an anti-inflammatory so that route is out. I already am doing exercises so that is out. She thinks I may need PT and an injection... Oh joy. Something else to see a doctor about. Just when I was starting to enjoy this monthly doctor appointment business.

Thursday, November 18, 2010

I joined a workout class

I am really determined to lose weight and get in shape. I feel flabby. I don't feel flexible. And my size 8 wardrobe is calling me. I miss those clothes.

I joined a workout class. A local gym is offering a class, the Pink Program (but I don't have to wear pink), to those of us luck enough to have had breast cancer. So its not really free, but if you survived surgery/chemo/radiation and a complete loss of modesty as a result, you can take this class and regain your flexibility and fitness. According to the book that comes with the class, The Breast Cancer Survivor's Fitness Plan, you will 'reclaim health, regain strength, and live longer'. I don't know about all that but I will try it. Its a 12 week program.

I do admit I took the book out of the library once, racked up a lot of overdue fees and never read it. I am also supposed to be reading a chapter a week so it even comes with homework. And a medical release that I have to get signed by my doctor when I finally get the damn form.

The class started Monday and is on Mondays and Wednesdays. I went on Monday, missed yesterday and will miss next Monday because of previously scheduled business commitments but will go next Wednesday. The instructor said that is okay because the first two weeks are stretching only so if I just do the exercises regularly and I am the only participant so far. Yes, its a class of one. Which is kind of cool but have you ever done exercises while watching in a mirror with the instructor, who is probably a size 4...

I did the exercises in class on Monday. The instructor told me that I might be sore the day after. I thought, hah, I do my other exercises so I won't be sore. Hah is on me. Ow to my hips. Ow to my back. Ow, ow, ow. But I have been doing them every day and will continue to do so.

I have also been reading ahead at some of the exercises in the book. I won't be able to do any that involve twisting my back at all. But that wont be for weeks so I'll talk to the instructor before then.

But since the price of free to breast cancer people is really kind of high I do hope I get my money's worth and regain my inner size 8.

Wednesday, November 17, 2010

Caregivers and caregiving

Navigating Cancer has just announced the results of their recent Caregivers survey. There are millions of cancer patient surveys out there - what kind of cancer, how long have you had it, what stage at diagnosis, treatment etc. Then there are a few more million surveys and questionnaires on how well you are protecting yourself against cancer through lifestyle, exercise, and eating habits. Caregiver surveys and issues are seldom addressed. Or should I say addressed too infrequently.

Navigating Cancer looked at the issues caregivers face and the emotional, financial, and physical strains they cope with. They surveyed over 300 current and past caregivers - most of whom are spouses or other family members. I can easily compare this with my life in the past three years where my husband was my caregiver during my treatment and I was my husband's caregiver through his surgery and (long) recovery from his colectomy.

It is nice to see in the survey that we are not alone in dealing with the same issues. The number one item that was provided by caregivers is moral support - also known as 'smiling on the outside and crying on the inside'. "Yes, you'll be fine (I really, really, really hope)."

Our big coping mechanism is humor. While I was going through chemo, my husband accompanied me and we would play scrabble while sitting there for hours of infusions. My husband would tell me he liked it when the drugs kicked in and I couldn't form words longer than 2 letters and he would easily win.

But cancer is very isolating as are many other medical ailments. Your caregiver becomes your rock who supports you through the roller coaster of treatment. You don't get to choose your caregiver, they just sort of happen. You know who they are, they know who you are and what you need. But they are greatly under appreciated. They make sure you get to appointments when you can't go by yourself. They change bandages, look at yucky things and tell you they really aren't that bad. They help with drains. They remind you to take your pills. They hold your hand when it hurts.

Go give your caregiver an extra hug for their support.

Tuesday, November 16, 2010

Who is high risk?

Women who are at high risk of breast cancer now should get MRI's in addition to mammograms. They define women who are high risk as those with the BRCA gene mutation. What about those of us who have had breast cancer already? Aren't we at high risk? Should we be getting MRI's too?

Actually I think its up to our doctors who should get which test. But let's focus on the words 'high risk'. Yes those with the BRCA gene mutation are considered at higher risk of getting breast and ovarian cancer. But what about use who had it once? We can get it again. Don't forget about us too.

Monday, November 15, 2010

A very difficult decision

The most difficult decision for a patient is to reach the point of 'no more'. When it happens, it must be respected. This is also true of someone who wants to have a Do Not Resuscitate order in their medical file and living will. Basically an individual is saying its my body, let me do with it what I want.

It is a decision to die peacefully in a hospice or to keep fighting with chemo and treatments to the end. Or not to be surrounded by tubes and doctors and nurses but to be with family and friends.

A family member is sure to wish to change their mind and keep them fighting to the end. But if you have been told there is no chance or that there will be minimal quality of life, you must decide.

We all want to live as long as possible. But what happens when you don't have the luxury of living to your 90's? What if your health isn't as good? Or an accident happens? We all have approximately a 1% chance of dying in a given year. What would you want to be done if your number was up?

Every time I go in for surgery, I am asked if I have a living will and I can say yes I do. I guess what I am trying to say is don't wait until someone has to ask you your thoughts on this as it would be very difficult to bring it up, let someone know before hand.

Sunday, November 14, 2010

So what does all that pink crap really mean?

Pink was my favorite color. Along came breast cancer and its pink ribbons on everything - socks, t shirts, cars, food packaging, store windows, etc. Then the world is bathed in pepto bismol for the month of October (instead of orange and black). Millions wear a pink bracelet. Thousands wear little pink ribbon pins to declare their medical history.

And what has changed? Not a hell of a lot. Some companies got rich making a lot of pink crap. Everyone knows what color ribbon stands for breast cancer. Everyone will say the words 'breast cancer' instead of whispering it as a death sentence. Teenage boys can say the word 'breast' with the word 'cancer' without snickering. The world is full of people who know about breast cancer but are sure they will not get it.

We are aware of breast cancer thank you. We do not need more awareness. We need a cure. I know I am being redundant but awareness is overdone for breast cancer. Can we talk about other kinds of cancer? There are lots of cancers out there. Some grow tumors. Some grow in your blood. Some grow in your lymph system. Some case a lot of pain. Some you don't feel until its way to late. Some cannot be operated on. There are millions of people in this country who have been down the cancer road and are waiting, not very patiently, for the day they do not need to fear their cancer's return because there will be a cure.

The pink crap has brought us a pepto colored world where people can talk about breast cancer but where we still can't make it go away.

Friday, November 12, 2010

The right way to correct an error

We all know there is the right way and a wrong way to correct an error. Back in my early years in the business world, where word processing software was just beginning, we sent out a user manual to all of 300 stores in the chain I worked for with the word 'public' embarrassingly missing the letter 'L'. It was discovered after being mailed out and we ended up making a huge joke of it and laughing at the next sales meeting. It was rather embarrassing if you think about it but nothing more. We admitted our mistake and it could not be corrected. It was done and in print and out there.

A more significant error which involves harm usually deserves immediate admission and correction. So what would you expect after a surgical error? Sometimes they can't be corrected - we took out your left kidney not your right one or we replaced your left hip not your right one. Those are clearly more than an oops. There are supposed to be procedures in place to prevent this type of error. There is supposed to be a time out where everyone agrees on what is being done.

Surgical errors are usually admitted later and made public long after. But read through this doctor's story after he realized he performed the wrong surgery by dictating his surgical notes. He decided to make it public in the Journal of Medicine and exposes the Swiss Cheese system that is followed.

This is the correct way to handle things. First he went back and corrected the error. Then he went through the system and figured out what went wrong and went public so that the system can be better corrected as more are made aware of its problems.

I think the next time I have surgery I will write notes on my body showing them what needs to be done after I am sedated. 'Please cut here along the dotted line and only remove the following items.'

Thursday, November 11, 2010

As the legal system gets involved...

I had posted on the long term side effects of prescription drugs and now the legal system is getting involved. I am sure they will figure this out in few decades with millions spent on legal fees.

I have great respect for our legal system but sometimes going to court doesn't seem to resolve anything. It makes a bunch of lawyers rich and the drug company loses because they have to pay a fine and pull a drug off the market. The patient loses because their health isn't any better. The woman in the case referenced in the article had her jaw break after taking Fosomax. They fixed it with bone from her arm. Any award is not going to undo it.

When you take a drug, they give you lots of fine print about the potential side effects. I think we all think 'that won't happen to me' so we basically ignore them. (Unless it is chemotherapy that makes your hair fall out.) But basically anything you put inside your body has a potential for a side effect. I mean, if you eat ice cream, you might get fat. If you drink soda, you might get the hiccups.

I do think people are a little too quick to jump to the legal system to resolve their issues. If you think I am wrong, go watch a few episodes of Judge Judy or one of those other shows.

Wednesday, November 10, 2010

Respecting Patient Needs

Every person has their own comfort zone and needs which need to be met to ensure that they are able to cope with their medical appointments. Sometimes your comfort zone gets invaded but you also have to cope.

At my first cancer surgery, I was mortified to find out I woke up after the operation wearing a different gown than when I was sedated. Did they see me naked???? I didn't dare ask. I also remember the first time I went for a gynecological exam and it was a male doctor!!!! I had grown up with a female pediatrician and wasn't used to male doctors. I coped and was okay with it but mortally embarrassed.

In the case of Muslim men and women where there are strict guidelines on men and women being in the same room, never mind touching each other, if they are unmarried, medical exams can be restricted or just very difficult. It is not just Muslims that have this issue where their religion forbids it but anyone who's comfort zone does not allow for someone of the opposite sex to touch them. Some people are also just very modest and don't want someone of the opposite sex to touch them.

When my husband needed a primary care physician, I asked him his preference - male or female - and he definitely wanted a male doctor. To this day, I usually prefer a female doctor myself. Currently, the only male doctor I have is my back pain doctor. I think all the others are female, some by my decision and some by chance.

If you think about it, boys and girls are different (in many ways) and I prefer a doctor who has the same body parts I have. Ovarian cysts don't happen to boys. Hysterectomies don't happen to boys. I want a doctor who can understand my body better and what is going on with it.

I am not saying women should only have female doctors and men only have male, I am saying that this is what I am comfortable with personally. This is my comfort zone. If someone has the added issue of religious dictates, they should be respected as much as possible.

Tuesday, November 9, 2010

More thoughts on anniversaries

Last night I went to a volunteer meeting for the local American Cancer Society Relay For Life in town. I learned a new word - voluntold. When one is a volunteer, their spouse or family member is often a voluntold. I told my husband this last night and his response was 'well at least there is a word for it'.

While at the meeting last night, one person was there and she said it was her 15th cancerversary - 15 year since she was diagnosed, 15 years of cancer free. She had a first date with a new guy and was going out to celebrate after the meeting.

I started thinking about this. Next August would be 30 years since my first diagnosis but next May is 4 years since my second. So do I have to start counting all over at 4? Or since they were two different cancers, can I say 30 and 4? This befuddles my chemo brain. I will have to think about this some more.

But I will say that if I think about how times are different there have been some significant changes. In 1981, the Internet was in its infancy (if you must know the Arpanet, the Internet's predecessor, started in the 1960's). Cancer was a killer, it was the whispered C word, it was not talked about, support groups were for little old ladies held in churches. The treatment was barbaric, chemotherapy was brutal, surgery was radical, it was terminal. Medical information was limited to textbooks to be deciphered with a dictionary at hand.

In 2007, cancer is widely discussed online, there are blogs, online communities, support groups full of young and vibrant people. Cancer is not considered terminal. It is chronic. Medical breakthroughs are happening. Treatment is evolving at the cell level. Information is everywhere.

In 2011, what will the future bring us? I don't know. I do know one thing, to celebrate 30 years of living with cancer and a significant birthday, my husband and I are going to Iceland. Why? Because its there and I haven't been there.

Monday, November 8, 2010

A bit more 'blah, blah, blah'

Frankly I am not very impressed by the big news that lung cancer mortality rates are reduced by CT scans. Why? Because its not a screening for everyone like a mammogram. Its a screening for current or ex-smokers who have smoked for 30 pack years. What is 30 pack years? People who have smoked a pack a day for 30 years or 2 packs a day for 15 years. So if you have been abusing your body through heavy smoking for years, now we can help save your life.

I am a former smoker. (I'm not going to tell you how old I was when I started smoking because my mother reads my blog but you can be assured that I started smoking before college. But then she used to smoke too. In fact sometimes she would bum cigarettes off me.) I was a bad teenager and smoked. But I have never smoked that much. At my worst, I was probably a half pack a day. But for the last 20 years, it was probably 5-7 cigarettes a day. Yes I kept smoking after my first cancer diagnosis. Then I quit, then I started again, then I quit, then I started again, repeat for a few years, and then I finally really quit - after my second diagnosis.

What I am trying to get at is I know how addictive smoking is too. Its very difficult to quit. But don't tell the heavy smokers that now they can be relieved of the thought that they might be able to find out if they have killed themselves through their smoking through a CT scan of their lungs. This is nothing more than the strategic implementation of a test to see if the harm from the smoker's self abuse can be detected before it kills them.

Also, even though smoking is a leading cause of lung cancer, there are thousands who get lung cancer and die from it even if they never smoked in their life.

We still need a cure. Don't get stuck on the detection side of things, find a cure please.

Sunday, November 7, 2010

If you are reading this, its too late.

The best way to deal with changing the daylight savings time thingy is to stay in bed so if you a reading this its too late for you. Well, in our house, we need to explain to the cat about things like weekends and time changes etc. He thinks the world revolves around him and his biological needs for things like food, water, and attention (and don't step in his gift he left on the hall carpet outside the bedroom door) so at 430 am (old time) he began his morning wake-up-the-humans routine.

I don't even know if we are on day light savings time or regular (standard) time. All I know is I will be sleep deprived for a few days and will wonder which clocks and watches I reset. Except the basement clock I never reset - its just wrong half the time. I can handle international time changes of 5 hours or 14 hours no problem but one hour drives me crazy for days. But travel to a place with a one hour time change I can handle as well.

I don't really understand why we have to change time. Its something to do with saving energy and enjoying the evening natural light. I did learn that Ben Franklin came up with the idea but it took over 100 years to catch on. If its to enjoy the evening daylight, it doesn't work here in eastern New England where I think we should really be in Atlantic time if we were really technical about it.

Enough about that. Stay in bed. Sleep late. You'll feel better.

Saturday, November 6, 2010

We count too!

Yoo hoo! We are here! Don't forget about us and how we feel and how we are treated! Doctors are just starting to realize that the patient experience is part of the equation. Well maybe not just starting to realize this but more like acknowledging that how we are dealing with results and side effects are important too.

I will say doctors are human beings who are caring enough to enter the field of medicine and study for so many years to learn to heal people. But there is science involved in medicine where they are trained to read the pathology reports on cells and look for clear yes/no replied. Not, 'well, I felt pretty crappy after two days on that new medication so I stopped taking it'. Well how is 'pretty crappy' defined. Were you throwing up non stop or did you feel like you wanted to lie down for a bit?

I talk to my doctors and they suggest different things to me - procedures, surgery, prescriptions, etc. - at different times. My next upcoming discussion is with the ankle surgeon. I badly sprained my ankle in the summer of 2009. A little bone chip, a little tendon tear, and little cartilage chip (in a moment of stupidity I tried to look over my shoulder while walking - the danger of multi tasking). I have had x-rays and an MRI and tried PT, exercises, balancing, etc. I have been told if it is still problematic in December, I can have a 'cleaning out' surgery as opposed to a 'repairing' surgery.

My ankle is not better. I have been told it is 'chronic' (what a lovely word). I am really not looking forward to surgery (it would be my ninth - how many surgeries and then do you stop keeping count?) but my ankle is still not better. It is achy, etc. But if I had surgery, I know there would be a rehab period. Would it ever end up being better than it is now? How long will it take to stop being achy?

When you have a procedure/surgery/medical (mis)adventure, its not just the process of what happens when they do it but also, what are the long term effects. Will I have scar tissue that causes problems in moving my arm for the rest of my life? If you take out all those lymph nodes, will I have to worry about lymphedema for the rest of my life? What about underarm shaving?

For my next surgery, I want to know, not just what it will be like if I don't have it (I already know that part), but if I do have it, what are long term expectations, when will it feel better? Will it ever feel better than it does now? What about long term susceptibility to other injury with the surgery vs. without the surgery.

Some of my other surgeries have had more significant consequences if I didn't have them. When they say they are taking out the nasty cancer cells, you sort of shrug and say 'go right ahead' and don't worry about the long term results. I am sure they did give me a piece of paper before each surgery that had fine print to tell me about side effects. I have them somewhere... But maybe I should have paid a bit more attention to some of them.

I guess my point here is that we, as patients, need to educate ourselves on, not just the what happens if I don't have the procedure but what happens if I do. And then learn to speak up and tell our doctors about the problems afterward.