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.

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.

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?

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.

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.

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.

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.