Monday, May 31, 2010

A weekend away

We just came back from a weekend away. I believe I am the queen of mosquito bites. My nephew counted 17 on one side of my neck alone. I have many more. Probably 30 in all, just on my neck. I think a mosquito got tangled in my hair. But they don't itch that much.

Anyway, it was great to be away. My back does not like camping and hiking but it was a good time. Tomorrow I have looming work deadlines.

But as we were driving home, there was something on the radio about a prevention for breast cancer... I need to find out more. Always optimism.

Friday, May 28, 2010

Medical complications

Medical complications are the little fine print that is listed at the bottom of the form you sign before consenting for the procedure. Or they can be that lovely 'side effect' of a procedure or something. How do you really define it? Is my husband's keloid scarring after surgery that required further treatment a medical complication? Is a friend's reaction to chemo that required hospitalization considered a medical complication? Is an infection after surgery considered a complication?

I think we all basically assume that with any medical procedure, that there is some risk of complication, reaction, infection, etc that requires the need for additional treatment.

At first glance this article makes sense "Who Pays for Medical Complications". Insurance companies are not reimbursing providers for additional care needed after medical complications in an effort for hospitals to use safer procedures and cleaner facilities. Logic is there I think.

But wait a minute, how are insurance companies allowed to make decisions like this? For example, where will they draw the line? What if they say 'after any appendectomy a patient who needs more than two days of antibiotics is clearly having a complication and we won't cover that'? I am all for nice clean, modern medical facilities but I really dislike judgment calls on my medical care made by big corporations who are looking at the bottom line and not on what I really need to be healthy again.

Enough food for thought for the day. I am motivated to get up and get moving this morning. We are off for a fun day. I can't wait.

Thursday, May 27, 2010

Vitamins vs. eating a balanced diet

I try to eat a healthy diet. I really do. I mean we eat vegetables and grains and less and less meat and cheese and other high fat things. But I know I am not perfect and need vitamins so I take my vitamins (when I remember) and make up the difference. So I saw this article 'How to eat your vitamins' and thought wow, maybe I can do this. Then I started reading what you need to eat to get everything you need.

I believe for example that I would need to eat a 3 oz piece of red meat, a cheese burger on a whole wheat bun, a piece of salmon, and a piece of halibut as well as yogurt and a glass of milk, a cup of raw broccoli, a banana, an orange, a fig, some almonds, 1 serving of fortified breakfast cereal, a spinach salad, a cup of lentil soup, two slices of whole wheat toast, some raisins, and a baked potato. What? I can't eat that much in one day? I would be a balloon. Forget it, I am sticking with my vitamins. (And I'll really try to remember to take them.)

I am slowly motivating this morning. It was very hot again yesterday and that is just tiring. Today it is going to be 20 degrees cooler. I have lots to do and have to go to work and then run around and get a thousand things done. Might as well get moving.

Wednesday, May 26, 2010

Thoughts on genetic testing

There are all sorts of genetic testing coming available to the average consumer. There were the ones Walgreens was going to sell that would tell you if you were going to get some diseases. There is the BRCA test to tell if you are a high risk for breast or ovarian cancer. Then there is a new one that will tell you if your child has the potential to be a star athlete. Wait a minute. Why would you care if your child might be a star athlete?

Um, doesn't it matter if your child doesn't want to be an athlete or if they are genetically disinclined to be an good athlete but want to try out for a major league baseball team? This new test made me think of the communist Russian way of taking children with potential away from their families so they could spend their childhood prepping for the Olympics and other international sports awards to bring glory to their country...

This whole genetic testing thing makes me think of Big Brother... The question still is do we want to know about these things? Or are we better off not knowing? And still even what about people who get this information on other people and use it? The laws need to protect people and their genetic information before it can be made available easily and publicly.

Insurance companies should not have access to the results of genetic tests - just as with any other medical test. They should cover the test if they are needed but not have any knowledge of the results. A child who is going to be active and end up a star athlete might have more sports injuries than another non-athletic child and insurance companies should not be able to discriminate there either. But should insurance companies be required to pay for genetic testing that people want to know about themselves but not related to any medical treatment? BRCA testing yes, sports abilities no, potentially proclivity to diseases maybe.

Okay, enough for today. I have to get my butt out of bed and finish up some work and stop by the post office on my way to my other job. Then I have errands to run and am meeting friends for dinner. Walter is on his own for dinner but there are left overs from last night - a giant casserole of the vegetables left in the fridge (leeks, onions, peppers, asparagus, spinach, etc) over pasta with some sauce and a little cheese. I have some for lunch today as well.

Tuesday, May 25, 2010

I dreamed about the garbage disposal

A little background here so you don't think I am too weird. I had sedation last week and I always get weird dreams from the drugs for a few days. Whenever we have issues with the garbage disposal, I am the one to reach in and 'rescue' things. Most recently this included the little top for the pressure cooker (and am now in search of a replacement one). But I digress, the other night I had a dream about the garbage disposal that for some reason something got stuck in it and when I reached in it was full of broken glass all over the bottom - like light bulb glass. Then in my dream I decided it might be better to grind it up and send it on its merry way down the drain.

In the morning, I thought 'what a weird dream'. So if anyone wants to analyze that, feel free and tell me what you think. But if it says anything about cancer, forget it, don't bother.

Yesterday I went to work and then for a walk. There is a nice big lake conveniently on the way home which is about 3 miles around. I decided to take advantage of the nice weather and get my daily walk in there. It was quite nice - a little crowded but nice.

Today I am behind schedule. Usually between the combination of my husband getting up and the cat wanting breakfast there is no hope I get to sleep past 6. Usually the cat comes back up and sits on me until I get up - a 15 lb cat on your stomach is not conducive to sleep. Well both failed in their jobs this morning, and I didn't wake up until 7. That doesn't sound very late but I have work to do and then have to get out of here around 9 for an appointment. Later I am meeting a friend for a walk and then need to fit in a good chunk of work this afternoon. My life is not too exciting.

Monday, May 24, 2010

Lots of news

Every year the American Society of Clinical Oncology meets at their conference and lots of promising cancer news comes out as a result. I never used to care about this meeting but now I do read the announcements. I guess I'm waiting for the cure. This year is no different. There are a bunch of preliminary announcements out that look promising but none of them apply to me. I'll check back at the end of the week and see if there is anything more interesting.

I do think that this is progress in the cure for cancer but they have been looking for it for a really long time and still haven't found it. Will it be figured out some day? The research looks 'promising' they say... But it has looked 'promising' for a long time.

And the news just flashed a story that people who suffer from allergies are less likely to get cancer. The theory is that when you sneeze you get rid of the cancer cooties. No I'm not making this up. They didn't use the term 'cancer cooties' but something along the lines of 'cancer causing cells' but its early and I didn't catch the whole thing. I'll have to find the rest of the story online. I don't really have any allergies...

Yesterday I had a semi productive day. I mopped the kitchen floor which meant moving all the cat's food dishes around. Then I vacuumed the living room, while the cat hid in the dining room. He was traumatized by my attempt to be a domestic goddess. In an effort to redeem myself, I let him out later in the day so he could go after the other cat in his front yard. He immediately chased him down the block and across the busy street and stopped right in front of an oncoming car which thankfully stopped. But he has proved he has no traffic sense so he will be restricted in his outdoor forays in the future.

I also found a new quote I really like: "There's nothing wrong with you that a couple of prozac and a polo mallet can't cure." Woody Allen.

That's enough news for my tiny brain on this Monday morning. I need to get out of bed and get dressed and do all my (damn) exercises and get to work.

Sunday, May 23, 2010

Never interfere with (someone else's) motivation (which might benefit you)

I have a problem (well maybe more than one but that's another story) in that I like to garden but because of my lymphedema and back, I can't really garden. I mean I can do little things but not the extensive gardening I used to do. Carrying around planters and bags of compost, sifting dirt for pots, and digging holes, etc. are things I cant do. My husband is learning how much work gardening is. He helped earlier this week and I told him I needed more help again this weekend which I knew he would get to at some point.

Yesterday morning at 7 am I was in bed, barely awake, and I heard him out in the backyard getting started. I threw on some clothes and ran outside to keep him motivated by getting my plants in and my dahlias out to be put in the garden and more. He was motivated and I wanted to keep him moving. Two hours later, we were both exhausted and stopped for breakfast, all my plants were in - vegetables, spring bulbs, window boxes, hanging plants, front planters, the lawn was mowed and fertilized.

Gardening goes much faster when there are two of us but I still wish I could play in the dirt more. I do need to get some marigolds to plant in front of my tomatoes but then I am done. No maybe I have some more seeds to put in or did I finish those? I can't remember.

Anyway, my husband woke up motivated yesterday and worked hard and now I am happy. But I today I have to do some weeding.

Saturday, May 22, 2010

Another debate with myself

We all have these little debates with ourselves. I mean I hope we do - and I am not the only one. (Or do other people argue with little green men or the voices in their head?) Could I be returning to some kind of normal? I don't know. I don't feel as stressed. I don't feel as limited by my body. I am not sure.

I have been on this medical roller coaster a long time. You keep waiting for the other shoe to drop. And just when things start to settle down, you get the jolt back on to the top of the roller coaster and around another curve. So is my life settling down or is it just the calm before another storm? I'm not sure.

Friday, May 21, 2010

I'm trying


I know I can be trying as well (or so I have been told by my loving husband) but I am trying to diet. I was very good and wrote everything down. The scale slightly nudged downward. Then we went on vacation and I decided my diet deserved a vacation as well and stopped writing things down. I have not been able to motivate to write things down again. I have several days where I have written down my healthy breakfast. I have even written down lunch a few days as well. But I haven't made it to write down everything through dinner. The scale is standing still.

I do have the best of intentions. I was told losing weight would be very difficult for me so I don't have any great expectations of losing zillions of pounds. Ideally I would like to like to be able to eat correctly and lose some weight and not have to write everything down for the rest of my life.

I did learn I had some bad eating habits that I wasn't aware of and have since eliminated those from my diet. I am scheduled to go back to the dietitian in a few weeks. I will try to get back on track in the next few days so I can bring in some successful food logs and show her I can do it. But I am not sure I will go back after that. She didn't tell me anything I didn't know. She did refer me to the online tool, SparkPeople.com, that helped me learn what I was doing wrong. But that's it. I think I have to be happy with the size 12 me, instead of the size 8 me that I used to be. Wah!

I guess what I am trying to say is there is no magic bullet to make me lose weight. I am not going to by conventional means (liposuction is not going to happen). I am not someone who can cut down for a bit and drop some weight. Its not going to happen. This is due to the combination of my medical history and my current medications. I can hope to hold my own and slowly go down but that's about it.

Thursday, May 20, 2010

Its just a side effect

I hate side effects. What is the side effect of a three hour nap? Waking up at 4 am.

Yesterday went okay as 12 needles worth of fun can be. I got to the hospital and had an hour to wait because I was early so my husband wouldn't be late for work. Normally I would go eat some breakfast but I couldn't eat. I sat in the lobby and knitted and watched CNN.

Finally I motivated to check in and went down to the surgical area. I changed into a lovely gown and coordinated robe that make us all look like other clones... Then the fun began. They had to put in an IV. I have wimpy veins. They have limited options as I have lymphedema arm which is not allowed to be used for IV's, blood pressures, etc. I made a point to drink two glasses of water before my cut off time because it can help with your veins. Basically I think that if you are dehydrated your veins are skinnier.

The first nurse tried. She poked and prodded and then she pulled out her needle and tried the first vein. She didn't get in the vein. But it hurt, more than the tiny pinch she promised and caused some bruising. Then she went to vein number two, which is nice and prominent on the back of my hand. She said that was a rolling vein, meaning it moves around, and she missed again. At this point (thankfully) she gave up and got another nurse who poked and prodded as well and then she tried. It took her some effort but finally after several needle pricks I had my IV. And two other sore spots. Ouch. I will say its not the nurses, its my wimpy veins. This isn't the first time they have had a problem. I asked about this and was told that some days can be better than others and there is not much that I can do about it.

Then we went for the fun part. I was told with the sedation, I wouldn't really feel or remember it. I did feel the first needles. But then I took a nap and it was over. I dozed in the post op area and then came home. My father dropped me off and wanted to come in. I said I was fine and got my bowl of chocolate ice cream, which the cat wanted to share, and then got in bed for just a minute. I had a three hour nap. With the cat. Even though it was 3pm I wanted my grilled turkey and cheese sandwich. I couldn't find them. I went through the entire fridge. I had to settle for left over spinach pie (quite yummy but not the same thing). I have no idea what happened.

I did get some work done after that and had dinner. I did go to bed relatively early. I feel okay this morning but my back definitely is achy sore. It is to be expected after all the needles. I should feel improvement in the next two to six weeks as it takes that long for the nerves to die off. Today I will go to work because I think I can do it. I will bring my ice pack and pain meds and can leave early if I need to.

PS I found the turkey and cheese in the freezer after dinner....

Wednesday, May 19, 2010

I'm starving

I want breakfast. I want a banana and some Greek yogurt. Its down stairs in the fridge. AND I CAN'T HAVE ANY! Today I am off for my lovely thoracic radiofrequency denervation for which I will be sedated so no food after midnight or water after 2 hours before check in. The whole point of the sedation is so I don't feel it or as they put in vague medicalese 'should not feel anything'. I am overjoyed to think about this. But I check in at 830 this morning and will take 1/2 an ativan when I leave so I don't stress as much.

When I come home, by lunch time, I will have chocolate brownie ice cream and then possibly a turkey sandwich, grilled with cheddar cheese, on rye, with mustard. I will start with the ice cream because I deserve it after the needles adventure. Then get to the turkey sandwich. In the meantime, I will just go with the old dieting trick of drinking another glass of water so I feel full.

I was told after this procedure I will need to take it easy for the rest of the day. Well its a gloomy rainy day so I think herbal tea while watching cooking shows will make me feel better. I also am supposed to do some work from home today. I figure I can be productive for a bit. The cat won't mind, he can hang out with me - he likes that. He thinks he is getting attention while he sleeps.

But in the meantime, my husband thinks we need to leave in an hour so he isn't late for work. I still have to take a shower, get dressed, and do all my (damn) exercises. So perhaps its time to motivate.

Tuesday, May 18, 2010

Further adventures of being a moron

Yesterday I had a busy day. I was off to a meeting in the morning and decided to make a quick call in my car. So I pulled out my headset and plugged it into my phone. And some how, got it caught over the steering wheel. It was stuck! I don't mean stuck. I mean stuck stuck. I couldn't pull it. I certainly didn't want to drive with it stuck between the steering wheel and the dashboard. I pulled and tugged and tugged and pulled and couldn't get it free. I kept on turning on the wipers and the turn indicator (which certainly added to the effect). The engine was running but I was pulled over to get organized and was really working on trying to figure this out and get it free for several minutes.

Finally I went to plan B: scissors. I cut the cord to my head set and pulled out each half. I was actually concerned at that point that it would be stuck and I would have to go to a gas station to get it taken care of because I didn't want to drive in case it impaired the steering.

Now about driving and talking on the phone. Yes I do it but with a head set. And I am happy to hang up if in traffic or other issues where I need to focus. One car we have is a stick shift and that definitely requires a head set. No excuse for driving, shifting gears, and talking on the phone. I used to work with a woman who would drive, drink coffee, talk on the phone, and shift gears. She said she would steer with her knee. Now that makes me feel safe on the road.

But basically yesterday I was a moron. I couldn't get the cord stuck over the steering wheel again if I tried. I told my husband the story last night and his response was that only I could do something like that.

Monday, May 17, 2010

Would you want to know?

Science is at the stage where now they can promise all sorts of things by analyzing your DNA. (This always makes me think of a cross between Igor in Dr. Frankenstein's lab with bubbling beakers and a weird 1950's black and white sci fi movie where they are trying to find martians among the residents of a normal neighborhood. But I digress.) So do you want to know? Do you really want to know that you are more likely to get cancer or any number of other life threatening or changing ailments? Really? Are you sure?

To me its kind of like knowing that you are going to die in a car accident in a certain number of years. Wouldn't you live with a feeling of doom? I think we all know now that we are going to go at some point but I don't know that we want to know when or how ahead of time.

I was surprised to hear that Walgreen's was going to offer a DNA test for sale. They have since decided not to and the test is not yet FDA approved. But a $20 DNA test available over the counter in your corner drug store? Isn't that a bit much. By the way, its $20 for the test and then $79-$249 to get the results. Its not an instant test. You have to spit in a tube and send it to a lab.

Now, what if I had known how my medical life was going to turn out ahead of time? No thanks, I don't think I would have wanted to know. And at this point, I really don't want to know anything about my medical future other than everything would go away - which unfortunately it isn't. Some things will - my ankle should heal - but my arm and back aren't getting any better anytime soon unless there are some new medical breakthroughs.

Yesterday I did get up and meet my sister and friend in the Avon Walk but I did call them when I was on my way to make sure I could find them in the crowd. They declined my offer of donuts (a healthy treat to be sure but if you are walking 40 miles you can spoil yourself) but we did connect and I walked with them for a little bit. Overall $5.8 million was raised by 2500 walkers.

I did come home to attempt to do some gardening, attempt being the operative word. Most of my plants are not yet in the ground and my back hurts. Today more will go in the ground but my husband will do the work after he gets home (but don't tell him I have plans for heavy labor). Today I have a meeting for volunteer work, work, and an appointment. I will motivate and go for a walk first as it is a beautiful spring day.

Sunday, May 16, 2010

A secret mission

Today I am off on a secret mission. My sister and a friend are doing the Avon 40 mile walk for breast cancer this weekend. I called them to cheer them on (and annoy them) several times yesterday. This morning, I will call again just when they should be starting. But what my secret mission is that I plan on calling them from the first mile marker where there is a cheering station and will walk with them for a bit. They don't know this which is why it is a secret mission. But since they are computerless (and slept in a tent last night) I can write about it here and they won't know until afterward.

Yesterday they both asked me if I can join them at the closing ceremonies which are way the hell on the other side of Boston and involves standing around. This is closer and a shorter excursion that my pitiful excuse for a back should be able to manage. And its a surprise.

I think its a great thing what they are doing. These days there is no way I would be up for a 40 mile walk, regardless of how much training I put in. My back could not handle it. But I completely support them in their efforts (and if you would like to donate to them, its not too late.)

Also, thanks to my pitiful excuse for a back, I am up early (the cat's happy he had breakfast early) and might actually make it there on time. I need to leave in about 1 hour to make sure I get there on time.

Saturday, May 15, 2010

a good night's sleep

Yesterday was a tough day. I was not feeling well - mostly from lack of sleep and lots of back pain. I worked at one job and then met a friend for a walk. I am not sure how I got through that walk but I came home and alternated preparing dinner with sitting on the couch and took a pain pill. Then I went to bed early on top of that.

Last night I made a deal with my husband that he would make sure the (damn) alarm clock would not go off this morning. I actually slept for nearly 10 hours. At one point I woke up to feel the cat walking on me. This means he was hungry. Well, I was sleepy so I played possum and he gave up and went some place else. Sometimes he comes and checks to see if we are awake and will get up and give him food.

Today, so far, so good, but it is only 730 am and I am still lying in bed. I will eventually get up. I am meeting friends for a walk at 10 so I can be lazy for a bit. Because of my crazy schedule this week, I actually have to work from home today for a bit. But thanks to a laptop and wifi, that might happen in the back yard in the lounge chair.

Yesterday while I was at work, I was talking about my upcoming back procedure. One of my coworkers asked if I was nervous about it. I don't know if I am nervous but maybe stressed a bit. I mean the two previous times that I had the diagnostic version of this procedure, they were painful. The first time was actually probably one of the worst medical procedures I have ever been through. This time they claim I will be sedated enough not to feel pain but awake enough to hear them talking. Then I went online and read about the potential side effects and warnings. Now I really don't have the warm fuzzies over this.

I think I'll give up thinking about that until next week and enjoy the nice weekend.

Friday, May 14, 2010

A day of mistakes

Yesterday was a day full of mistakes. I had the best of intentions but as you know the road to hell is paved with good intentions. I started off by volunteering at the annual conference for the regional direct marketing association. I love to do it every year. I think this was my fourth year. I usually go on the Wednesday and stay through the evening dinner and then go back on Thursday morning early and stay for the day. I get to learn what is going on in the marketing world and talk a lot of people I rarely see. I made two mistakes. Mistake number one was to think that I could be up on my feet on Wednesday afternoon and then again on Thursday. Mistake number two was to have to leave to go to Walter's doctor appointment. So my back was very sore for trying to be on my feet (and be a normal person) and I missed the best parts of the conference.

From there, I met Walter at the hospital and went to his appointment with him. We then made a stop at my doctor's office where I made another mistake. I picked up the instructions for my back procedure next week. I am having a thoracic facet radiofrequency denervation. This includes the advice that after sedation 'each nerve will be heated and destroyed, but you will not really feel this, as we will numb each nerve first.' Please define 'not really feel'. This sounds like it might hurt a tiny bit.

We went out to lunch so Walter could eat some food after being on all liquids to prepare for his test. We also walked around the shopping center (another mistake). Then I went to my lymphedema appointment where I made the mistake of asking about doing exercises with my arm as I can't lift weights or anything. Now I have four more exercises to do ten sets of twice daily.

From there I went to the farm stand and finally back home. Then the next mistake was to go to Costco. Why was this a mistake? Because my back was really sore and I should not have been on my feet. By the end of the trip, both of us were crabby (because I was in pain and crabbier) and I had to take a pain pill and sit down for a couple of hours to recover.

See what happens when I try to be a normal person? I end up with more exercises, lots of pain, and nasty information about upcoming medical procedures.

However to update on both of our doctor appointments. Walter's doctor is pleased with his healing and says he doesn't need to come back until January where he gets to have another colonoscopy but everything looks good. The lymphedema clinic said that while my arm is larger than it was a month ago, its not uncommon for lymphedema to flare up and subside and I just have to deal with it. I am doing the right thing by wearing the (stupid) sleeve all day every day and doing my massage and exercises. However there is not much else that can be done. If it gets worse, I can go back for treatment which is wrapping and more compression, done daily for an hour or so for four weeks. How is that for fun?

So it was a day full of mistakes but Walter got some good news so we are both happy. Today I will do a lot less standing and go to work.

Thursday, May 13, 2010

We must stop and ask why?

Why is it on the days when you have to get up early you can't sleep the night before and wake up overtired and stressed before you leave the house? This is not fair. I have to go to a volunteer event and be perky and cheerful and answer the same questions forty seven times - is there WiFi? Whats the user name and password? How do we correct our badges? But I must say, everyone is nice, its just me who is overtired because I didn't sleep. I actually enjoy this conference every year and wish that I could stay for the day's sessions but because of both of our doctor appointments, I will go and help the exhibitors get what they need so they will be ready for the networking session that starts at 830. I will then leave and begin the doctor appointment rounds.

Now why didn't I sleep well? Because between the husband and the cat, apparently I am only entitled to a sliver of the bed about 10" wide, and I am slightly (but not much) wider than that. So the entire night I was squished. This is not a first time occurrence. It seems to be happening regularly. Our featherweight cat has decided he has a new place he likes to sleep which is approximately 1 foot from the edge of the queen size bed right under the pillows. He's happy. My husband is happy. I'm squished. When I get in bed first, I have plenty of room. Grrr...

Anyway, I have to get moving because I will be late and my husband is nagging.

PS My husband just read this and claims he had nomore room in the bed than the I did so the cat must be to blame and isn't too happy with the word 'nagging' so please read the last phrase as 'my husband is attempting to get me out the door on time'. And he's not a bed hog. The cat is.

Wednesday, May 12, 2010

Latest update

Yesterday I started my day with my annual physical. Sometimes I wonder if I need an annual physical when I go to so many other doctors but apparently your PCP is supposed to manage your health care and you need to see them if they are going to do this. Anyway, the verdict seems to be that I am still here and doing okay.

Nothing new was uncovered. My vital signs are normal. My weight, while lower than in the past, still has a way to go. I did ask the nurse to pretend it was 20 lbs less than the scale actually read. I'm not sure that she did that but it never hurts to ask.

My vital signs all appear normal. I was told to watch for more cough and head ache issues but otherwise sent for blood tests and told that I should be fine. We did discuss my back, ankle, yucky ultrasound, and lymphedema but those all seem to be under control for now.

I also go the results of last week's chest x-ray which is clean and the results of my bone density scan which is also good. Apparently my taking extra calcium and vitamin D has reversed my osteopenia and put me back into normal ranges (perhaps I should continue to remember to take my vitamins regularly...) Two pieces of good news that make me feel better.

I also straightened out my expensive Femara prescription. It is now switched to the slightly more affordable mail order version. So I feel better, more balanced, and slightly saner.

Today begins my overcommitted 48 hours. I volunteer for an annual conference locally where I need to be there this afternoon from 1-5 or even stay through dinner, and then back tomorrow technically from about 730am - 5. But Walter (luckily not me) has a sigmoidoscopy as a follow up to his surgery on Thursday at 1030 and I want to go with him. I also go back to the lymphedema clinic tomorrow for further evaluation. In addition, I need to get some work done, a friend is bringing me new curtains she hemmed for my bay windows so they need to be cleaned out and the windows cleaned, and I can't remember what else. But I feel over scheduled which leads to crabbiness and stress.

Tuesday, May 11, 2010

Another clear case of yes, no, maybe, we're not sure, perhaps

When I first met my husband he suffered from heart burn all the time, and lived on tums. After we got married I convinced him that going to a doctor would be a healthier option than not going. The doctor told him to take prilosec for his heart burn. Which after some arm twisting, he does. And his heart burn went away.

Then a few years ago, I started having digestive problems and found out I have a hiatal hernia which can cause heart burn. I was told by my GI doctor that if I have heart burn more than three times a week, I should take prilosec as well. So far its worked well. Take prilosec and no heart burn. Don't take prilosec and get heart burn. We actually get the cheap Costco generic version but its the same thing.

But no, they had to keep doing research and what did they find? Taking prilosec and other proton pump inhibitors, can cause serious side effects. Well gee thanks. And guess what it can help cause serious fractures in post menopausal women or higher risk if infections in hospitalized patients.

So now back to the take prilosec and no heart burn or don't take prilosec and get heart burn dilemma. Or maybe I should just stop reading research. That causes heart burn as well.

Anyway, today I am off to my annual physical to discuss the state of my health. That's a joke. What health? I have a big list of all sorts of whiney issues to discuss with her but am not significantly concerned. After that I am off to work for the day. Maybe squish in a walk this afternoon too.

Monday, May 10, 2010

Do you remember?

The Alamo? The Maine? No, do you remember to take your pills regularly. It turns out I am not the only person who doesn't remember to take their pills. I have five prescriptions to take daily. I also try to take vitamins daily. I have two pill boxes with Sun-Sat compartments to keep track of them. I sit down every Saturday afternoon and refill them in a complicated system that includes spreading all the bottles out on the bed and opening them one at a time, putting them in their little compartments, and putting the bottles away. But the first step of my Saturday afternoon routine is to look at what I missed the previous week and give myself a little pep talk.

I always remember to take my first two pills of the day - which I have to take an hour before my next ones.
I always remember to take my next 3.5 pills (why is it the smallest pill I take (1/8" diameter) has a daily dose of 1.5 pills?) once I have eaten something.
I almost always remember (6 out of 7 days at worst) to take my evening pain pill.
I usually remember (5 out of 7 days) to take my vitamins. The problem with vitamins is not only do I have to remember to take them later in the day, I have to remember to take them at three different times - noon, dinner, and before bed.

Its way too complicated.

Then once I get through pills, I have to remember to do my damn exercises. I have twice daily arm exercises, twice daily ankle exercises, and one daily back exercises, and a daily walk. Have I whined about this recently? I can't remember.

Anyway, this morning I was gratified to learn that I am not the only person to forget their pills. But I was surprised to learn about how many people don't take their pills because they don't think they need them daily.

Basically, my thoughts are that if a doctor says here's a prescription for a medication for something, you do have a choice if you want to take it but you should understand the risks if you don't. I know women who have opted not to take Tamoxifen by choice. Or others who manage their thyroid issues through natural methods as opposed to medication. But its their choice and they made it. But if you do choose to take a prescription you need to take it as prescribed. If an antibiotic is prescribed for ten days, you need to keep taking it. Also some medications may not make you feel different but may have a long term effect on your body.

The whole issue of affordability is different. If you cant afford a prescription, talk to your insurance company, talk to your doctor, speak up - they won't know if you don't tell them and there might be options available.

Enough for this morning. I am going for a walk. Its 37 degrees out but I need to motivate as I have a 9 am doctor appointment and then have to go to work and then work from home. If I don't go now, I won't go. But I will take more pills before I go.

Sunday, May 9, 2010

Femara

Now I have switched to Femara from Tamoxifen. Tamoxifen is the gold standard for hormone therapy for Estrogen/Progesterone positive breast cancer. It has been around for thirty years or so. Basically, here's my non medical school brain attempts to give a coherent explanation, if your breast cancer is hormone positive, feeding off the hormones, they can suppress the hormones with Tamoxifen for an additional five or more years of treatment. Particularly true for women who were premenopausal.

However then there was additional research and aromatase inhibitors were discovered. Currently there are several on the market, Femara, Arimidex, and Aromasin. Research was done and found that women who took Tamoxifen for 2-3 years and then switched to an AI, did just as well or better, than those who stayed on Tamoxifen. This was particularly true for post menopausal women, most of whom skip Tamoxifen these days and go directly to an AI after treatment. Anyway to beat the odds of recurrence works for me.

So yesterday I went to pick up my prescription and blinked several times at the price of the co-pay - $120 for a 30 day supply. I said a small 'eek' and bit the bullet and bought it. I then called my insurance company and found I can get it online for $65 for a 3 month supply. I am switching to the online for this. I don't usually like ordering online because of the delay in getting them and basically I just don't really like it. But I will like it in this case because I am cheap.

Then I started thinking about the name. Obviously its something made up. What were they thinking? It doesn't sound like a food product - I'll have the spaghetti alla femara please. It doesn't sound like a plant - I planted some femara in the sun last year and they bloomed all summer. It doesn't sound like a geographical area - I spent several days in the Femara region last summer, it was quite nice and relaxing. It sounds like a feminine hygiene product - the femara is stocked in pink boxes right next to the tampons in aisle 7, halfway down on the left.. Actually its not pink, they are little tan pills that come in a big bottle that is also tan and all color coordinated. How special, and over designed, just like all the thought process that was put into coming up with the name.

Next I was stupid and went online to WebMD and started reading the reviews of it. Never do this. Everyone who has a problem with it posts and tells how miserable they were. If I look up all my medications, everyone hates them all. Just skip this step, you'll be happier.

So I've done my research, thought about it and figured out what I need to know. I took the first pill this morning about an hour ago and I didn't have any initial reactions.

Today is Mother's Day - Happy Mother's Day Mum! We went out to dinner last night. Today I am supposed to get some gardening done as well as fold laundry and clean the kitchen. How exciting.

Saturday, May 8, 2010

Well its progress

I survived yesterday. I arrived on time for my mammogram, and changed into a gown, got to sit around for a bit and wait for my turn. Then I got to wait around again. Then they wanted more pictures. Then they finally said you have calcifications we needed to take another look at but they might want me back in six months. But nothing suspicious. Then I changed back into my clothes. Then I was late for my next stop - a bone density test - which was fine - and changed into a gown and pajama pants for the test and then back into my clothes. I managed to squeeze in a quick lunch before my next appointment, so of course they weighed me when I got there.

My oncologist had me change into a gown and thinks I am doing okay and switched me to Femara - so now I just have to see if I have any new side effects. She did send me for a chest x-ray because I told her I have had this nagging little cough off and on. I also told her I have been having headaches and she said she could send me for an MRI to which I said no. I will if they get worse but a brain MRI is where they put a cage over your head during the entire thing. I'll pass for now, thanks. Then I changed back into my clothes and went to see the surgeon who had me change back into a gown. He thinks I'm fine and should come back in a year - and I was done. I changed back into my clothes and headed down for a chest xray where I changed back into a gown. Finally I changed back into my clothes for the last time and I finished at 130...

So yes I have been having head aches and a cough. People who don't have cancer cooties are allowed to have a cough and head aches with no concern. People who have been known to have cancer cooties get all sorts of fun tests just because they have little normal symptoms. But to be realistic, I did get my eyes checked recently and my glasses are fine so its not that. They have been going on for a while but I am happy to wait and see. A chest x-ray is an easy and painless thing that I usually have every year anyway.

So I guess its progress. My official three year cancerversary isn't for a few more weeks so I'm not celebrating anything yet. But I do get to have a big sigh of relief from not finding anything icky. That was five changes of clothes - off and on in all. Next time I am going to skip all the changing clothes business and show up in my pajamas and a robe.

Friday, May 7, 2010

Stress? What is that?

Today I have
- 1030am mammogram
- 1130am bone density scan
- 1200pm oncologist appointment
- 100pm surgeon appointment

So how am I this morning? Stressed? Just a tiny bit. I have to pack my bag of crap to take with me including a book (which I think I'll have plenty of time to read because a day like this always involves LOTS of waiting), two lists of doctor questions, my list of medications and allergies, and a half an ativan to take when I get to the hospital so I don't stress all day. If there is one thing I have learned is that sometimes it pays to be proactive. My only question is when do I get lunch because I am sure that I will be running late after my first appointment which means I won't have time to eat until after my last appointment and I might get crabby if I am hungry.

My goals for the day are:

- a clean mammogram because we don't want to go through all of THAT again
- a good bone density test that shows my osteopenia did reverse itself or stabilize in the two years since my last one when I upped my doses of calcium and vitamin D
- a clean bill of health from both my surgeon and oncologist
- a prescription for more lymphedema sleeves from my surgeon
- a prescription for an aromatase inhibitor instead of Tamoxifen
- all my silly little questions answered
- no cancer cooties, suspicious findings, or anything abnormal found which requires any further testing
- lunch

Then once I get through all that I have to go to work for a meeting. Would anyone like to make a wager as to what time I will actually get done with all my appointments? My meeting is at anytime after 2 and preferably start before 3 due to traffic avoidance desires. I am not sure I will make it by 3...

Yesterday I survived my busy day and lost my sun glasses - but found them when I realized I never took them with me and they were at home on the end table all the time I was looking for them and looking stupid wearing my husband's sun glasses that he left in the car. Then I got my nails done and my hair cut (and as predicted, when I came home my husband said my hair looked the same as in the morning).

Now I am going to take my stress level out for a walk to enjoy the nice morning. But I just realized its 47 degrees so I guess I won't be wearing shorts.

Thursday, May 6, 2010

It can be yours as well for $20 and a mere ten minutes twice a day!

Yes, you too can have a healthy balancing ankle for the mere investment of a $20 copay and ten minutes twice a day. No stress, no strain, no surgery!

Yesterday I went to see my ankle surgeon. I thought because of the state of my ankle after twisting and falling a few weeks back (when I attempted to be a healthy person) that I had no choice but ankle surgery to heal up. The surgeon talked to me and then she tried bending my ankle around under this funky xray machine where she could move my ankle and take pictures of it. It was kind of cool, but I digress. She said the ligaments are fine and surgery would do nothing. But my balance is off. I admit to neglecting the balance exercises I had been given - I have so many damn exercises I forgot them - but apparently they are the key to my healthy ankle. So ten minutes twice a day, I need to balance on my ankle for a minute at a time and then off and then back on. Can you balance on one foot for one minute? Can you do that five times in a row? This will be a challenge. And today my ankle hurts because of the contortions the doctor put it through yesterday. But I am supposed to try this for six weeks and go back and see her. Then if its still a problem I will get more PT.

So I left the doctor's office and was driving home and was very happy I don't have to have surgery. I didn't want more surgery. But I was hoping that it would heal up my ankle and it would stop hurting and get better. It would be nice that something would actually get better. So the downside of this is six weeks, actually probably more, of work on my ankle and then PT and then finally, maybe it will be better. So not as good as initially assumed.

Yesterday was a very long day. I worked, went to the doctor, went for a walk and went to my monthly support group. I was gone for 12 hours. My back was not happy. As a result, even though I put on a pain patch and took pain meds, I was up for a few hours in the middle of the night. I am overscheduled today - work 8-215, 230 phone call at home, 4-5 manicure & pedicure, 530 hair cut - and I want to fit in a walk, but I am starting out exhausted. This won't be fun. Tonight I will go to bed early. But now I have to start balancing, doing my back exercises, my arm exercises, and eat some breakfast.

Wednesday, May 5, 2010

Off to see the ankle surgeon

Today I am off to work and then I see the ankle surgeon to find out about scheduling surgery. My ankle is not better. It is not getting better. In fact it is swollen again. Its not going away. The question the doctor had was 'if it was in a state where I can live with it' and the answer is no. I am sick of it.

So today I will find out about scheduling when it can take place. I know it won't be until at least another month because my next back procedure is the 19th and it will have to be at least 2 weeks after that. But it will finally be scheduled and dealt with and I can move on and deal with other ailments. It will be nice to have something get better and go away as opposed to chronic things that just seem to hang on and get worse (like my back) or just never go away (like cancer).

My appointment is at the end of the day so I am going to work first and then after I will go to a meeting. Yesterday, don't tell anyone, but I was 'working from home'. In addition to working, I also went to my therapist, Petco, Bed Bath & Beyond, Costco, the dry cleaners, 5&10, post office, Walgreens, retrieved the cat from my parent's house (his vacation home) and met a friend for a walk. I only worked for about 2 hours total... I might be working a little this weekend as a result.

After being home for two days my back is not happy still. Perhaps its because of everything I did yesterday as well. Maybe I carried a few things as well. Hmmm... Self inflicted I guess. My arm isn't too happy either. I think I need to schedule another visit at the lymphedema clinic but will wait until after I see my surgeon on Friday. But that's an appointment for another day.

Tuesday, May 4, 2010

Aggravation

I am very aggravated and resultingly stressed. I am aggravated about the lack of success (or should I say the destruction) of my diet while on vacation. I know this is my fault but I feel I went backward and am avoiding the scale for a week or two and postponing my follow up visit with the dietitian.

I am aggravated about my stupid back. I go back on the 19th for a facet block. this is a permanent procedure where they use radiofrequency to kill of inflamed nerves in your back. The idea is they are feeling pain so they get rid of them and they grow back but forget about the pain they felt before. I am not really looking forward to this but if it gives me any kind of relief like the diagnostic one they did, it will be great. But the process is another one where they stick all kinds of needles in my back. And just having it on my calendar is a bit of a stress factor.

I am aggravated about my stupid ankle. I go back to the doctor tomorrow to see about scheduling ankle surgery and figure out how long to wait after the back procedure before the surgery and how I can have a cast for six weeks and not be on crutches because of my stupid lymphedema.

I am stressed about my Friday doctor appointments - annual mammogram, bone density test, follow up with surgeon, and appointment with oncologist. It will not be a fun day. I will be stressed. Also, its not something I like having on my calendar.

I am aggravated by people who tell me they are doing one thing and then dont - how long do you wait if someone says 'I want to do something nice for you' and then you never hear. When do you assume its not going to happen? Or by people who you ask not to do something and they do it anyway - when do you trust them and when don't you?

I don't know but by the end of yesterday I was very aggravated, and crabby, and possibly a tad cranky as well. This turns me into a stressed person as opposed to the nice mild mannered person that I try to be.

Monday, May 3, 2010

Back from vacation

Its Monday morning. Its raining. We have a boil water order. We have to go back to work after a week of vacation. I want another day off. Wait, tomorrow I am 'working' from home.

We did have a wonderful vacation. We spent five days in Montreal where we saw all sorts of different things. It did snow one day while we were there. Then we went to Stowe Weekend of Hope which helps refresh one's thoughts on cancer. I met a lot of other people with cancer and lymphedema. We compared lymphedema sleeves and treatments and prognosis. It was nice to not be the only one wearing a stupid sleeve all the time.

We got home early afternoon, did laundry, grocery shopped, all the usual things. My back is happy to be sleeping in our own bed. While we stayed in nice places, I missed the memory foam topper we have and my back ached most of the time. I am also reunited with my five pillows! Yippee!! And no more public bathrooms!

I did learn something from our last vacation. Do not weigh yourself the day you return from vacation because all that will happen is you will say 'eek' followed by lots of other words that you shouldn't. I will weigh myself in a week or two after eating a lot of salads.

But now we are back to work. Grrr. And I'm going to be late if I don't get moving. Triple grr.

Sunday, May 2, 2010

Rambles and travels with public bathrooms

We have visited several public bathrooms over the past week. There was the really nasty one at the convenience store/truck stop. There was the really nice one at the conference hotel where the floor to ceiling doors on the stalls did not have locks and you just had to hope no one opened the door on you because you really couldn't tell if they were taken. There was the really tiny ladies room with two stalls between all the giant conference rooms that always had a line. There were the ones way far down in the basement of the museum, past the coat check, gift store, etc. that required a good five minute walk.

Most of these were updated with the latest in sanitary touch free devices. You know the toilets that flush automatically, the sinks that turn on automatically, the hand dryers or paper towel dispensers that are motion sensitive. But they all seemed to be lacking in one way - soap dispensers. I did not see one touch free soap dispenser anywhere. So if you took advantage of the touch free everything, you failed on the quest to remain as germless as possible simply by opting to use soap. Is this a marketing opportunity? Don't even get me started on what I think of public bathroom toilet paper. It runs the gamut from extra soft to nearly paperbag....

Anyway, today we are on a quest to obtain bottled water. There is a giant water main leak in metro Boston that has prompted the local water system to provide untreated emergency water for sewage and fire fighting and bathing but it is not clean enough to use for drinking and must be boiled for a minimum of one minute. As we are not home yet, we will take the opportunity to stop here and purchase vast quantities of bottled water (preferably in 2.5 gal jugs) to bring home with us to get us through the coming days. Unfortunately the pipe that broke is 10 feet in diameter and is custom made so its not like they can go to the warehouse and pick up another one. Life continues to be an adventure.

Saturday, May 1, 2010

Bottled water

I found this interesting. A local town wants to ban the sale of drinking water in plastic bottles starting next year. Its not the water that's the problem, its the bottles. I found it interesting that they are not the first and there are other places that no longer spend tax payer dollars on bottled water.

I am someone who goes out the door every day with water in a refillable bottle. I don't buy bottled water except in desperation - meaning I forgot my bottle or something. Then I see people buying bottled water daily and throwing out, not recycling, the empty bottles. I find it to be a wasteful habit. Do you ever get to a meeting and find everyone has been given a bottle of water? What's wrong with tap water out of a pitcher? Its probably cleaner than the bottled water any - it is more regulated.

Anyway, enough rambling on that. Today is our fifth wedding anniversary. In that time between the two of us we have had six surgeries, two cancer diagnoses, and numerous other medical fun adventures. But we are still here and happy together. Perhaps we will celebrate tonight.