That's not how I want to be treated

So why did your doctor order those tests? Because you should have them to find out what is wrong with you? What if you found out you endured the latest fun little medical procedure because your doctor was concerned about a malpractice lawsuit? Well, gee, thanks for the assumption that I am ready to sue you and for making me undergo another medical adventure?

Okay, so apparently this is a bigger concern for ER doctors but the point is valid. I want to only have the medical procedures that I need. Believe me, the last thing I need are any more medical adventures due to fears of malpractice. My body is forcing me to have enough medical adventures on its own.

Yes we do live in a litigious (now that's a big word early in the day) society where too many are quick to hop on the lawsuit bus because they don't like something. I know someone who is always ready to sue - their neighbors because they took down some trees, etc. You get the picture. What is the point of this? Besides creating enemies in the people you sue and making a bunch of lawyers rich? There is no point. I know lawyers who think these lawsuits are just as stupid.

I am not saying that sometimes a lawsuit is necessary and medical mistakes don't happy. Doctors and nurses are people too. And who said 'to err is human'? So what if you went for kidney surgery and they took out the wrong one, changing your life forever? Its not something that can be undone. Maybe you can't work again and will be facing huge medical bills the rest of your life. Would a lawsuit allow you some financial award so that you can have some quality of life? Perhaps.

Doctors also have malpractice insurance so its not that they are paying you out of their pockets. Unfortunately it is my understanding that malpractice premiums are incredibly high and force some doctors to alter their practice or stop practicing all together. Too many times, a patient or their family decides they didn't like the results of the doctor's treatment and then sue.

Excuse me but there are no guarantees in medicine. The human body is not a machine, each one is unique and reacts differently to treatments. They treat you as best they can and hope for the best outcome possible. A good doctor will tell you about side effects and risks to any procedure and take the time to answer your questions about options. Ask questions and understand the risks. And then don't blame the doctor if you experience the 1% risk.

I think this is another area that needs to be addressed in health care reform. If we are reforming the system in the US and one of the goals is to provide access to medical care and making it more affordable, we should not be forcing doctors out of the profession or force them to carry crippling malpractice insurance.

Today I am off to work again. I am spoiled with my schedule. This week, horror of all horrors, I have to work two days in a row. All day. Tomorrow I will 'work' from home again. There is no sign of my missing cards. I hoped that because I ordered a new Amex card, I would immediately find both of the missing ones. No such luck. I'll go get a new debit card today.

Calling it quits

Let us play pretend for a bit. So you get some bad news from your doctor and you try surgery and chemo and radiation and procedures and all sorts of fun medical adventures. You feel like crap (to use a medical term) and are spending all your time at the hospital. You keep getting more bad news and more fun medical adventures are recommended. You are tired and feel like crap and are spending even more of your time at the hospital. The doctors tell you they can try some more things, you hesitate but agree to more fun medical adventures. Then you find out that the fun stuff is not very successful and your doctors get hesitant, or possibly diligently consulting with colleagues and pouring through medical research to offer you more options. But they tell you they are running out of choices and treatment options. You are stuck in the hospital, not having time to do the things you enjoy. The nurses and doctors know you better than anyone else because you are spending all your time with them. The doctors offer some more options but don't seem as optimistic.

Wait a minute... Isn't it your body and your right to make choices? Yes, it is. Are we medicated to death? Possibly. I read this article and started thinking. Not to be morbid, but I think we need to make our choices ahead of time. Yes I have a health care proxy and my husband and I have had the 'what if' conversation (which is practical and not morbid). But then I realize there is more to calling it quits.

Before the time arrives and you are wrapped up in the emotional mess of bad medical news, isn't it appropriate to think about what you want for quality of life? Do you want to die in a hospital hookedup with tubes and monitors? Or do you want to decide ahead of time that when it gets to a certain stage and you don't have much time left, do you want to spend a last month or week on the ocean with family and friends?

I read the article and now realize I have some more thinking to do. I need to decide when that time happens (in the distant future I assume) where do I want to draw the line and say I'm done with treatment? I'll have to figure this one out but I assume I have a long time to think about this one.

Yesterday was an awful hot day with high humidity. So what did I do? I went for a six mile walk in the sun. It was awful. But we were walking around a lake so we couldn't cut it short. Today I am going to walk and will go for a shorter walk and it won't be as hot so I will be fine.

Yesterday I realized I have 'misplaced' or 'put in a safe place' both my debit card and my Amex card. I called both and neither have been used but I can't find them. I gave up on Amex and requested a new card - which means I will find the old one in another day. I will probably go get another debit card soon... as soon as I run out of cash and need more. Now I am late once again. Grr.

Its only a number

Last week I was talking with a friend who also has a bad back (and has the same back pain doctor). She said her goal is to have her pain level be a 3 at most each day. I think that's not a bad goal. Her pains I think are steadier than mine. Mine jump around depending on what I am doing. When I go for a walk, I feel it move around my back from a 2 to an 8, sometimes. I just suck it up and deal with it or whine and take my pills, depending on my mood and my pain levels. Maybe if I think of it as just a number, it will be easier to cope.

And then people say to me, 'but at least its not cancer' and there in lies the rub... I can smile and say 'yes at least its not cancer'. But inside the brain of every cancer person is the niggling thought 'not that they have found... yet'. That little 'what if' is buried in every cancer person's brain.

When I go to the doctor, they always ask me if I feel safe at home (yes) and what is my pain level. I have to think about that one. Which doctor am I seeing so which pain level do they care about. Is my ankle hurting again or just my back or am I have muscle cramps from my Femara or is it just a plain old headache. I have to then think how much pain is which body part causing. Then when I say my back is a 4 or a 7 or a 3 (if its a good day), I have to add that I am seeing the pain clinic already.

Today is another number - predicted high of 92, with high humidity. Sounds lovely, and oppressive. How fun. I am meeting a friend for a walk - when it will be really nasty. But if I am feeling overheated, maybe I can ignore my back pain.

Yesterday I was extremely productive. In addition to going for a walk and doing laundry, I caught up on my DVR recordings and watched the cat take an extensive nap under the coffee table. He snored.

My brain doesn't work

I do believe buried inside my skull is a brain. It just sometimes doesn't work right. I find myself forgetting to send attachments to emails chronically. I type the wrong word all the time. I meant to write 'winter' and wrote 'weekend'. I meant to write 'online' and I wrote 'long term'. I do this all the time. So sometimes if what I write doesn't make sense, this is a failure on the part of my brain which controls my typing. They just disconnect.

This morning my back is moderately unhappy with me. We had a small party yesterday and need to do some cleaning as a result. As well as eat a lot of left overs. Its also laundry day. But first I will drag my husband out on a morning stroll. He says he doesn't want to but I will persuade him.

Anniversaries

This is not photoshop, this is Oscar the bionic cat. Really.

Yesterday was the anniversary (I think) of both Farrah Fawcett's death and Michael Jackson's. (Guess which one got more coverage - there were five shows on television last night about MJ.) There was also an article on how people celebrate anniversaries as part of healing and as a way of remembering.

Cancer people celebrate cancerversaries - their way of coping with the loss of their normal lives and reflecting on how their lives have changed forever. Ask any cancer person how they deal with their life changing event.

Today may not be a good day. I woke up with horrible pain in my right shoulder. This is new. This may also be a side effect of Femara. I had forgotten about this. Femara can cause joint pain and bone pain as a side effect. This may not be related to my back. I go back to my oncologist in September to see how I am doing. She can switch me to a different AI (Aromatase Inhibitor) to see if I handle it better. Worse case, I could go back on Tamoxifen but I was kind of enjoying feeling better since I have been off it.

Anyway, I have to motivate. I was stupid. (Not that being stupid is new for me.) I have to go to a fund raising breakfast this morning and then we are having a small party this afternoon. Why did I do this to myself? Because it seemed like a good idea at the time to have a party on the same day as the breakfast. I have a million things to do and the first one is to figure out what I am going to wear to this stupid breakfast - and I have to make a presentation!!! Grrr....

Allow me to edit this article

Here's a article that I wish I had three years ago, After cancer Diagnosis, What Comes Next? But I would like to edit it a bit as I think it is missing a few things:

1. Get basic information about your cancer - they missed one of the most user friendly sites - American Cancer Society at www.cancer.org. If you google your type of cancer you will probably be able to find information on it. Be leery of any sight with medical information which ends in .com, .net, or .biz - they are trying to sell you something.

2. Pick a doctor - If you know anyone who has had the same cancer, ask them. Get a local referral. But also stick within your comfort zone. If you like your doctor, fine dont worry about it. If you want a second opinion, feel free to get one, but also to go back to your first doctor for treatment.

3. Learn to read your pathology reports - the first stop should be to ask your doctor for some explanation of what it means. Then feel free to take it home with you and google away all the terms (and then get confused when they use all the fancy words for different types of cell structure) and then feel free to call your doctor's office back with more questions.

4. Find alternative medicine - there are lots of great ones out there. There are a lot of snake oil salesmen as well so be picky and research any you want to take. Then make sure you keep all your doctors aware of what you are taking or doing for alternative treatment. Some things interact with the drugs given in cancer treatment. Even some vitamins need to be restricted during treatment. Best bet is to keep a list of what you are taking (vitamins, prescribed medicines, over the counter medicines and alternative medicines) and bring it with you to every appointment

5. Find support groups - Don't try to go it alone. Cancer is an isolating disease and it is stressful to you and your family and caregivers. American Cancer Society has information on local resources. However ask to speak to a social worker where you are being treated and ask them for local support resources for you. They can help direct you to any resources you may need - emotional, financial, etc.

6. Clinical trials - Your participation in these can help future cancer patients and should be considered. But they can be very difficult to get into. They are trying to find specific groups of cancer patients - males under 60 who have lung cancer, at stage III who have had surgery in the past 30 days but haven't had any other chemotherapy.... You have to match all the criteria.

7. How to pay for this - Ah the fun part. You have a horrible diagnosis and it could drive you to bankruptcy. Just a little stress on you while you are trying to keep your hair, your dignity, and convince food to stay in your stomach during chemo. Yes they list some great resources but a good place to start is your own insurance company and the hospital social worker and finance department. Call your insurance company and make sure you have a clear understanding of what your co-pays are, referrals that are needed, and out of pocket costs. You don't have to tell them anything about your diagnosis (which is none of their business), you can just ask them to explain your policy.

Then talk to your hospital to be sure you understand how they deal with preapprovals and referrals and what you need to do if anything. Then, ask your social worker if she can help you. Finally, if you are financially strapped, make sure your doctors know you can't afford a lot of expense and see how they can help you juggle their advice with your financial issues. What can be put off vs. what needs to be done more urgently and cheaper alternatives available.

Okay, so I wrote a lot here. Now there is nothing wrong with the original article but I felt a need to add my own two cents worth... Just my opinion.

Yesterday I might have over done things. I worked all day and went for a walk (before the thunderstorms). Then my husband waited for the thunderstorms to end and we went to run some errands before our get together tomorrow afternoon. I was exhausted by the time I got home. I went to bed early. I will do so again tonight. I have a very long day tomorrow because I am an idiot and over scheduled myself.

A bucket list

Just before I went through chemo, the movie 'The Bucket List' came out and became the latest topic of conversation. Everyone was talking about having a bucket list. But if you were in cancer treatment, the idea of a bucket list had a slightly grimmer overtone, and no one I know had a bucket list. I did eventually watch the movie after I finished treatment.

But fast forward to more than two years out from treatment, I went out to dinner with some cancer friends last night who I had met during treatment. One of them said that she and her husband were going to Niagara Falls because it was on her bucket list. At that point, we could all talk about a bucket list and it wasn't a grim thought - like the in-treatment list where you can't get past the idea of needing to get your affairs in order before going off on any trips.

Anyway, we did discuss having a bucket list and what we would want to do. I think now I have started to put one together:

1. Go to Iceland - why? Because I have always wanted to. Its there, and I want to visit.
2. Swim with dolphins in the Bahamas. I had an opportunity once and never did.
3. Go back to Spain and have some of the best paella I have ever had again. I was there for a summer and lived on paella. I would love to repeat the experience.
4. Spend a year living on the ocean - preferably with a sandy beach to walk on daily - watching the tides go up and down.
5. See the Taj Mahal, the Great Pyramids, Great Wall of China, and Chichen Itza - not all the Seven Wonders of the World but the ones that I want to see that I haven't yet.

Well this is a start. I will have to come up with some more. I should probably also tell my husband I would like him to come on these adventures with me.