Monday, September 7, 2009

Politeness, eavesdropping, and rudeness

Yesterday I met a friend for coffee (and breakfast). We were sitting there minding our own business discussing cancer, recurrences, surgery, metastases, doctor's opinions and all sorts of other warm fuzzy things cancer people discuss. The man at the next table interrupted us to tell us about his method (which isn't really his and he wasn't selling it but here's a website and the guy's name who started here in Boston and he has about 100 centers and there's a place on the south shore where they have weekly meetings at 11 on Saturday mornings where you can go and learn more) that uses people's energy and a brass doll or something as a chime to heal people. Now he perturbed me on several levels.

- He butted into a private conversation. Its one thing if the people at the next table have an overly adorable child you want to comment on or you really want to find out where the person got their clothing so you can go buy your own or they are having a medical emergency and you are a trained EMT, then its probably okay to interrupt. But a private conversation on something that is kind of personal? No, go away. Aren't you supposed to politely ignore what is going on around you (unless its a two year old in a temper tantrum)?

- He interrupted I think a total of THREE TIMES. Clearly clueless and he forgot what his mother taught him. But he wasn't selling anything (but he has been in holistic healing for nearly 20 years and a few years ago a friend who is an acupuncturist told him about this and how he now has included it in his repertoire and we can go to a meeting on Saturday mornings at 11).

- He wouldn't take the hint and shut up. My friend was better at getting rid of him than I. I wrote down the damn website to get him off our back (but have since lost the piece of paper - damn (NOT)). She managed the polite 'thank you' and turned away.

Its unfortunate that some people want to take advantage of other's misfortunes to make money. Cancer is not going to be cured through energy healing and a brass gong. Sorry. Go bug someone else. Unfortunately he did tell us he goes to the same coffee shop every day which means I will have check whenever I go in and that he lives near by.

After I got over that idiot, I managed to enjoy my day. I went for a walk and then we ran a bunch of errands. But I got a tiny bit tired and my back protested so I hung out with my ice pack for an hour (and watched a cooking show - my secret addiction). Today, we have all sorts of things to do and my back hurts. (Now there's a surprise.) But my ankle is feeling okay. I might attempt a slightly longer walk than yesterday.

Sunday, September 6, 2009

on sailing and backs

Evidently no one informed my back that the constant wiggling of a sail boat can cause pain. My back does not like waves, swells, and wakes from other boats and other kinds of motion. It hurts. But it was really nice to be out on the ocean again. We haven't been out since last year. My husband had some short term ailment (not seasickness) that caused him to be miserable out at sea as well. But he has since recovered and is doing all sorts of productive things around the house - like dishes and laundry - and I am going out for coffee with a friend. Then we have all sorts of productive things to do such as get ready for vacation. But in the meantime I'll waste time on line.

I did manage to sneak in another short walk yesterday morning but as a result then my ankle started to swell up. I want my damn ankle to get better so I can walk more normally and my back will hurt less. Am I too demanding? Wanting to be healthy? And wanting a cure for cancer? I hope not!

Anyway, today is get ready for vacation day. We have a list of things to do. Tomorrow will be finish up the list of getting ready for vacation... And some gardening. And plant watering. And admiring my rose bush which is still putting out big yellow long stemmed roses (which I find most exciting).

So I should go be productive and brush my teeth so I can meet my friend in 10 minutes (yikes!).

Saturday, September 5, 2009

But I followed the Directions!

See what do they know? They know crap. They know nothing. They tell you, eat right, exercise, blah, blah, blah, blah, blah. And you can reduce risk of getting breast cancer. Well, I did and then I got it anyway. Just another damn example of how they don't know squat about it. I can tell you about more women who will say the same thing.

Basically what these articles tell me is that the amount of things they don't know about cancer are huge. They can provide some advice on how to avoid it which are based on statistics that show in a probability in a group of people studied who did or didn't do some things showed to be more or less likely for a specific outcome. This is like saying of the people who were sneezed on by someone with the flu, they were 20 times more likely to get the flu themselves. Well, lah, di, dah, I say. Call me demanding but I am sick of advice like this. I want a cure. That's what will make me happy.

Okay, so I am starting today on a slightly crabby note. Well, yesterday I wore my air cast to work and took it off as soon as I got out to my car. Why? Because I have a mosquito bite on my leg which is inside my cast and it is DRIVING ME CRAZY! I also couldn't find the damn cortisone ointment yesterday morning. (I will find it today.) Then I went for a short walk - my first walk since the 'incident'. It was great to be out for a walk. I went slowly. I did not go by myself - I got Walter to come with me. But I had to ice my back last night and this morning both my back and ankle are less than happy - but I have drugs, ice and an air cast so I'll get throw the day with a perkiness seldom seen.

Today, we are going sailing. This means I will go to the boat and sit there and let everyone else do stuff. Hobbling is not good on a boat. It would be slippery if I wear my cast and and if you slide off, the North Atlantic is not that warm, even though its the end of the summer. But it should be a good day of sailing. This weekend is the schooner race out of Gloucester which happens tomorrow but there should be all kinds of boats out today.

Our only problem with going off for the day is to make sure the cat gets his insulin in a timely manner. He normally gets his shots at 6 and 6, 12 hours a part. (We define 12 as being between 11 and 13.) Yesterday we moved him to 7 and 7. Today he will be 8 and 8 or so and we can go out to dinner on the way home. But now I need to motivate. I'll take pictures I am sure.

Friday, September 4, 2009

The hand off...

You know when you go from one doctor to the next and assume that behind you is a long trail of medical records, tests, procedures, and all sorts of fun events. I make a point of trying to bring notes to doctor appointments - what did they do last time, what did they tell me last time, what did they tell me they would do this time, and anything else I can think of. So I bounce around between my primary care physician, surgeon, radiation oncologist, medical oncologist, therapist, the doctor's physician assistants as needed, orthopedic surgeon, and then I am sure there are few others plus all the nurses on staff who I deal with and technicians who run the 'procedures'. Who else? I'm not sure but I know there are more including the gastroenterologist I haven't seen since last year, the dermatologist I see rarely and the general surgeon who took out my gall bladder.

Do you remember the game of post office, or whispers or whatever you called it in your neighborhood growing up? You would sit in a circle and the first person would whisper something to the person sitting next to them who would whisper it to the next and then to the next and finally as it got back to the original person, they would say it out loud and everyone would laugh at how far off it was. Pretend that was your medical records? How warm and comfy do you feel now?

Well thankfully doctors and the medical profession have worked very hard on improving communication and do all sorts of things - computerized records are now coming into play, team care, etc. But, mistakes still happen. And what if your new doctor is at a different medical facility - you need to make sure your medical history and test results get there - the Pony Express isn't going to show up and do it for you. Also, just because everything is computerized doesn't mean everything is right.

Our medical co-pay changed in January to $20/visit. I am still correcting it every time I go. I have been told dozens of times by the staff, 'I'll put it in the system, sometimes it just doesn't take. But I am sure it will be in there now.' Well its September... My list of medications (which were all prescribed by doctors at the hospital, still don't seem to have made it into the computer. Nor have my medical allergies. I just carry around a list of allergies and medications for each visit.

Go read this article from the New York Times yesterday about medical hand offs. It doesn't seem so silly any more when they ask you your name and date of birth so many times or reconfirm for the 8th time in 20 minutes what exactly is being done, does it?

Well I am now running late and have a mosquito bite on my leg INSIDE my air cast. This will be a FUN day...

Thursday, September 3, 2009

News Flash: Cancer chips away at the enjoyable things in life

This is the latest news flash discovered in the on going effort to have a real (insert the word 'enjoyable' here) life. I went to the monthly support group that I try to go to yesterday (actually, it was my second visit and the first one was nearly a year ago- but I really mean to go more often. Its very different than my weekly support group that I went to for two years as it is structured with speakers, etc.) Last night a massage therapist came to discuss massage (and give demonstrations on all of us) for sick people. She usually does a lot of hospice massage (meaning end of life care). She talked about a lot of things and how you have to be careful not to get a very deep massage if you have any issues.

But here's the earth shattering news. If you have had any lymph nodes removed - and every breast cancer patient has at least one, most 15-20-30, you should never, ever get a massage on that quadrant of your body. This means that if you have lymph nodes removed under your left arm, you should never get a massage, other than a very light one done by someone who knows what they are doing, in that quadrant of your body. Your lymph system is divided basically into four quadrants (again a non-medical, technical explanation). You can draw a line up the middle of your rib cage and then I think across the bottom of your ribs to get the four quadrants. No massage in that quadrant for you! And if you have had lymph nodes removed and the masseuse doesn't consider it to be a big deal, skip that massage.

What's a massage if you say, okay, you have to stay away from that upper quarter of my back and shoulder and arm. I think it would be uneven. Its that the stupid pesky lymph system is under the skin and the theory is that a massage could induce lymphedema which is that pesky incurable, hard to treat symptom where you arm swells up pretty much permanently.

Other things that can cause lymphedema include sitting in hot tubs, any cuts or scratches, overly dry skin, burns or rashes on the quadrant where you had lymph nodes removed. Also, carrying heavy things, weight gain, and long plane flights are thought to contribute to lymphedema. (But you get weight gain as a result of treatment and from the medications they put you on after breast cancer.) Just another example of how cancer chips away at the enjoyable things in life.

So between my back and my lymph nodes, I got a five minute neck massage yesterday... Everyone else got a chair massage. Grr.

This is clearly in the case of be careful what you ask for. Yesterday I went to the hospital to get my blood test out of the way that needed to be done this month, pick up a print out of the results of my PET scan and my liver MRI last year. (I was curious what is in the results of a PET scan.) And if I combined these with my trip to the support group, I wouldn't have to go back to the hospital for four weeks. That may not sound like much but I like to maximize any break I can from going there.

I got my PET and MRI results and the over all conclusions at the bottom basically say I am fine. But its the gobbledegook in the middle that has me confused. I know know to read to much into it because I don't really know where the 'dome of the diaphragm through the iliac crests' are in my body (other than to say somewhere inside me) and that these tests pick up all sorts of things that are normal and not to be worried about. For example, lots of things were 'Patent' in my MRI. I was concerned and looked up 'patent' in a medical dictionary and this is what I got: 1. open, unobstructed, or not closed. 2. apparent, evident. So in other words, patent things are good things and not to be worried about. But there are some other terms I might ask my doctor to decipher.

Also, at my support group, I found out all about my new oncologist (at support groups we don't just talk about cancer, we talk about our doctors and nurses and tests - a great little rating system). I was very concerned about the switch and wanted to avoid one doctor because I had heard not so nice things about her. I ended up with this new doctor who I go see in November. Two women were there who have seen her already and she apparently is nice, reads your chart, asks questions, and is ready to try all sorts of things. They couldn't say enough nice things about her. I am much happier now. And don't see her for another two months.

Anyway, another over scheduled day for me. Coffee, work, feed a friend's cats who is out of town and make something creative for dinner. But I have all day to ponder that one.

Wednesday, September 2, 2009

More Reassuring News

In case you missed it, the Old Farmer's Almanac has announced their winter forecast. Winter will be here in a few months and it will be very cold in the midwest. We can also expect a Valentine's day blizzard in New England - well they said from February 12-15. I hope its not a 3 day blizzard. That would really be a bummer. I don't mind a one day blizzard, but a three day blizzard? That's when you start to look at your spouse as some sort of alien - why I am trapped in here with you? Can't you go shovel more snow or something?

The down side of my life, is that 20 years ago (or even five years ago) I would say a blizzard=skiing (and shoveling). Now a blizzard equals a tiny bit of snow showing, followed by frustrating because I can't go skiing (but happiness because I can't really shovel although I should be able to run the little electric snow blower we have). I might sneak in a little cross country skiing this winter but I don't think I am up for down hill any more. But I'm still having on to my relatively new skis that I spent a lot of money on and then never really got to use. I'm not sure why I am thinking about skiing and show shoeing yet, but maybe because there are already holiday displays in stores - which is just wrong if you ask me.

A few friends and I were commenting on when do you really start feeling normal again after chemo. The overwhelming answer is no one knows. But there seems to be some consensus that 2 years out is the right time. So how much of my never having energy, feeling tired, being in pain, will start to go away after December when I am two years out and how much is related to my damn back and will never go away? And they lied. When you are diagnosed with cancer, they say 'its a year out of your life'. Well its been a lot more than that thank you. Now, I'm really overwhelmed with cheery thoughts. Time to change the subject.

New topic: Today I am working from home. This means I have many social appointments. I am meeting a friend for coffee at 8 and another at 2. In between, I have a tiny bit of work to do, and will also go to the gym, the library, and run some errands. I will go get some blood work done, stop by hospital records, and go to a monthly support group that I never make it to. I have lots to do and I made a list but there is a possibility I lost it (the list and not my mind) already - need more coffee. (Found the list after five minutes of looking.)

I was hoping to avoid going to the hospital at all for the next month. I had a whole entire month with no appointments - don't know how that little miracle occurred. My last appointment was August 25 and my next appointment is September 25. But I also need to get in to get some blood work done in September. If I wait until the end of the month and then forget, I'll have to call the doctor back and get it reordered, blah, blah, blah. Its better to get it done while I am thinking about it. I also really have been meaning to attend this support gruop - its a monthly one and has a completely different focus than the others.

Lastly, I want to go to hospital records to get my PET scan and liver MRI results simply because I have never had a PET scan and I am curious to what it will tell me. I know the results were clean but I want to see it. New sensitive tests like MRIs, PETs, CTs, etc pick up all sorts of bad things but they are also sensitive enoyugh to pick up good things. They might give you the size of organs or any normal abnormalities in them. For instance, I know I have three hemangiomas in my liver (they are normal thingies to have, benign, you can keep them) but how big are they, what else is there? Inquiring minds want to know and its my body so I figure I should stay on top of what they say.

So today I am off and running. Running late already. But that's to be expected.

Tuesday, September 1, 2009

I was supposed to say 'wake up there's a mouse in the kitchen'

Last night my back was oh so cooperative and I didn't get much sleep even though I took one of my heavy duty pain pills. After our mouse issues, we updated our traps to two from one in hopes of nabbing the felon - guilty of leaving a mess on the counters and eating the crumbs in the bottom of the toaster oven (which has been scrubbed within inches of its life). Around midnight, between snores (of the cat and the husband - cat is louder), I heard little noises from the kitchen. I thought I could get up and see what it is, but what if its a mouse in the trap. I listened and decided that it probably was a mouse in the trap and decided not to get up and deal with something that would make my stomach turn in the middle of the night. I also chose NOT to wake up Walter - he wouldn't want to deal with a mouse in a trap at midnight. I didn't think he would appreciate being told 'wake up there's a mouse in the kitchen'. He needed to get some rest too.

Around 4 am, I woke back up (thank you to my back and ankle) and heard a loud noise in the kitchen, which was substantially louder than a mouse. I considered getting up but Walter woke up and 'suggested' that I go check the mouse traps. I 'suggested' in return that he should go because he doesn't want me to be the one to find mice in traps. And if it wasn't a mouse, it was a burglar so he should deal.

He came back upstairs to report that the mouse trap that had previously been on the kitchen counter was across the floor of the kitchen, sprung, mouseless, and the cat was supervising. He was also a bit peeved he didn't get to see/catch the mouse. Evidently, I was supposed to say 'wake up there's a mouse in the kitchen'. Even though we have not seen the mouse, I think the cat has. The noise was probably the cat 'helping' the mouse out of the trap. Shortly afterward the cat came back upstairs to tell us about his food dish. I turned the light back on to make sure that he wasn't bringing us any kind of mousy present as he has done in the past.

So today I feel very well rested (NOT) and there is a traffic accident that will make my commute a nightmare. My back and ankle are not happy. I think its because yesterday at the school I work at there was a giant meeting and I had to walk from the farthest corner of the parking lot with my lovely, handy, dandy, back pain causing air cast. If I had known and come 15 minutes earlier I could have parked much closer. (As it was teachers were walking at least 1/4 mile to get to the school so I am lucky I parked so close - but I snuck into the student parking.)

So my ankle is clearly telling me it is not ready to start taking walks which is quite the bummer. I was hoping to start walking soon. But I will go ride the stationary bike tomorrow and again this weekend. But today I really have to get moving so I can go sit in traffic.

I Started a New Blog

I started this blog when I was diagnosed with breast cancer in 2007. Blogging really helped me cope with my cancer and its treatment. Howe...