Time to change the guidelines

Medical guidelines are put in place so there are fewer questions about what are correct tests and treatments for patients. They can be anything from - do you need stitches for that cut or do you need an EKG? The criteria used can be anything from age, general health, behaviors, diet, and much more.

Behavior is a big one. This is drinking, smoking, eating patterns, exercise, etc. But if behaviors of the general population change, the guidelines need to be modified to adapt.

A generation ago, more Americans smoked. Guidelines were developed for low dose CT scans for current and former smokers - designated as those who had quit in the last 15 years. They were shown to greatly reduce deaths from lung cancer as it was caught early for many patients.  The guidelines were used to determine who would receive this annual screening and for whom doctors would recommend the scan and the insurance companies would pay.

Now as fewer Americans smoke and do not return to smoking, fewer are eligible for the low dose scans and have their insurance companies cover them. There is a concern that more cases of lung cancer will not be caught as early resulting in more deaths. 

Insensitivity

Some days I am really amazed at the heights (or lows) of people's insensitivity and assumptions. I met a nurse last week who was obviously very pregnant. She was very happy to talk about being pregnant, having a baby, and what a wonderful experience it all was.

Then she looked at me and said "I think every woman should experience having a baby" and paused waiting for me to respond. I said "I wouldn't know, I don't have any children." Then she asked me why I didn't have any. I was a bit flabbergasted.

This is right up there with people asking me why I have had cancer twice. Because the stars just aligned that way!

Do you mind? Really!

Issue #937.2a that they never tell you about having breast cancer.

There are so many things they don't tell you about having breast cancer. Here's is another one. You may not be able to wear your wedding ring. Really. My cancer was on my left, I had a bad node that lead to a axillary node dissection, which lead to lymphedema issues.

I woke up in the middle of the night last night and noticed my left arm was puffy. This morning I spent some time and got my wedding and engagement rings off. Now the puffiness is subsiding. I have done some of the stupid lymphedema exercises. I will wear my sleeve today.

But my rings are on the pinky finger of my right hand. They feel like they might fall off. Damn. I want to wear them on the ring finger of my left hand and can't.

Cancer sneaks into your life in little ways. I wish they told us about all the issues before hand.

A nice doctor appointment

Yesterday I met with my endocrinologist, a/k/a the thyroid cancer doctor. Last year was a horrendous experience.

I was very pleased on arrival to note that the idiot nurses manning the front desk at previous visits were no longer there. They forgot me last year, which added to my stress. I used to learn a lot about their personal lives as they chatted continuously at the desk instead of managing the patients. But this year, there were new nurses and they were nice. And they did not forget me.

I met with the doctor and we had a nice conversation. My numbers are where they are supposed to be, one is a little high which means my dose is too low (its backwards with thyroid numbers - more medication to reduce numbers) so my meds are tweaked. Which means more blood work in eight weeks and six months.

Next year I will see her again, unless there are problems with my new medication level and have an ultrasound to make sure there are no cancer cooties lurking around.

It was a nice doctor appointment, free of stress and all that. I can live with that. After cancer, all we can hope for is that the cancer cooties do not return.

I need a change

Things are starting to get to me this winter. Why? We have been living in the arctic tundra for weeks. I am starting to go crazy. I think. Maybe its just a case of cabin fever.

I am not asking for much. These are the things I want:

• I want to be able to wear shoes. Not boots. I have been wearing boots for weeks. I miss my shoes. Its been too cold and snowy for shoes. This morning was 4 below without windchill.
• I want to be able to walk outside. Without climbing over snow drifts or wearing boots (see above). A nice stroll without frostbite concerns would be nice.
• I want to be able to go outside and play in the garden, look at new things growing, and see what survived the winter. But the snow needs to start melting. 24 days until spring, but who's counting?
• I want one month without a single doctor appointment. Its been a while since I had a break. I have one today and then another next week I think.
• I want to feel better - no aches and pains. As if.

Maybe a vacation would be nice. But that's not happening for a bit. However in the meantime, I can plan some trips away. I'm up to five so far this year but not for a while.

I think this winter is an example of how people with chronic illnesses can't just run out the door and go have fun. I have concerns about falling on ice - that has happened before and injuries have resulted. I have concerns about getting cold - my fingers turn white with cold easily these days. And I'm sick of staying inside.

At least the snow drift outside the living room got small enough yesterday that the sun actually shined in the front window and the cat took a little nap in it.

Forward thinking

After getting eight feet of snow since January 25 (less than a month ago), I am trying to be forward thinking. We are not due to get a blizzard this week - which is fortunate because we have no more places to put the snow. The city of Boston called "Uncle" a while back. Today we woke up to 29 degrees. But nevertheless it will be around 5 degrees overnight tonight.

I look at my spring gardening catalogs and think about what to plant in the garden this year. I have no hope of planting anything soon as this is my front walk.

This would be a bit better.

(This is not my front walk, a cousin sent me the picture.)

But I digress. I am trying to be forward thinking. But I have a real  problem. The *(#&%$@&^ hospital has decided that it would be better to send an individual notice for each medical appointment a week or two before it, instead of a list of all appointments.

Look, I have chemobrain, fibro fog and general forgetfulness. I need you to send me long lists of appointments so I can keep track of them, especially when you change them on me. If I knew who to complain to on this I would.

But since I do have a doctor appointment tomorrow I will be sure to ask for an updated list so I can remember.

Call Me Appalled!

Yesterday was a long complicated day. It ended with me leaving the emergency room of a local hospital I rarely go to around 7pm. (I am fine, a friend needed some stitches). We were there for several hours and saw people coming and going.

As I was leaving, I noticed a woman taking her husband back to the car in a wheelchair. I saw them there when we got there several hours before. Her husband was groaning and in a lot of pain. She was steaming mad. And I don't blame her.

After they were there for hours, they were heading to another hospital as they were just told that hospital does not do surgery on weekends. Could you imagine? Why couldn't they have told them earlier?

I realize it would probably be a doctor to make the decision that he needed surgery but couldn't the triage nurse do anything about it so they were seen sooner before sitting there in obvious pain? I am appalled. I did recommend another hospital to her where I know they do surgery on weekends.