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.

No I wouldn't want that job

We all know that, whether we like it or not, there will be a healthcare system overhaul in the US in the coming years. Well, woop-di-doo. Here comes more bureaucracy, and offices in Washington, and a bunch of mindless 'idiots' telling the rest of us what to do. Or more importantly telling hospitals and insurance companies what to do while improving our health care while reducing costs (which somewhat oxymoronic).

Now I don't mean to say I am opposed to health care reform - I think our current system is awful and changes are needed. What ever the changes are there are some people who will like them and some who will dislike them and some people hate the whole idea overall. And there are parts that will be amended hundreds of times. But that is not my point. It was voted in by our politicians who represent us and since we elected them, we sort of, indirectly voted it in. And we are stuck with it.

So who is the lucky person who gets to run this program and be in the spotlight answering questions on it and supporting it and justifying all decisions? I have no idea but I really would not want that job. Can you imagine how many people will hate that person and hold them personally responsible for all their health care issues? They could easily become the most hated person in the US. Well maybe I am overstating this but I would not want that job.

This morning I received an email from Walgreens asking me to set up an online account where I could order prescription refills and better manage my medications. I did try but I need to call them. It might be helpful. Or like many online term things, I will set it up and then never return to use it... The internet must be littered with blogs that aren't updated and accounts that are set up and never used.

Yesterday I had some unpleasant pain episodes with my back and hips. Unpleasant in that I sat motionless in pain for a few minutes to wait for it to subside so I could move again. Grrr!!!!! Today I will take more drugs and ignore it.

Tuesday feels like Monday

Today feels like a Monday. Possibly this is because I usually get up and go to work on Tuesdays and Thursdays. This morning we are up early. I woke up in the middle of the night and went to get a glass of water out of the fridge and the cat woke up and wanted food. I gave him a few treats and then went back to bed. However, he was then awake and wanted breakfast and used his highly honed alarm clock skills and got my husband up early so I am up early. I will actually go to work early - the earlier I get there the sooner I get to leave.

Yesterday I gave myself a day off and went to the beach with a friend for the afternoon. It was a blast. We went for a walk on the beach which we both enjoy but our husbands, with whom we usually go to the beach, dislike. We agreed to go again. Yes I used sun screen. No I didn't get burned. And I took extra care of my arm but didn't wear my stupid sleeve on the beach because I am working on getting rid of my tan lines from the damn thing.

My back did okay but not great by the end of the day. I was catching up with an old friend on Facebook, actually someone who used to work for me, and she did point out that at least its not cancer. Perhaps I should stop whining about it as much but its hard not to whine about it when it bothers me on a daily basis.

Yes its not cancer. But the problem with cancer is even if you are told there is 'no evidence of disease' or NED, that just means that they can't find any right now. And they can never be sure they got it all. They can just say they can't find any evidence of it. Cancer needs to reach a certain size before it can be seen on tests and scans so you can have it and they can just not see it. Once you have cancer, that little lurking thought never goes away 'what if it comes back?'. This is why cancer people have more issues with depression and anxiety than healthy people.

Okay, time to stop whining and get my act together for the day. I still have to do all my damn exercises, take a shower, and figure out what I want to eat for lunch today.

On checking out

I have always thought that hospitals don't do the greatest job on checking people out as they do on checking you in. Its kind of the same with hotels. They are all very nice at the front desk and happy to help you and you are checked in with speed. Then when you check out, you get to wait in line by the guest who insists on analyzing every line item on their bill, disputing them one by one, and then finally its your turn.

When you arrive at a hospital, you get your hand held through surgery and post op and when you get to your room the nurse comes and makes sure you are doing okay. They get you settled in. After spending a few 'enjoyable' days stuck in a hospital room, the doctor finally says the magic words 'you can go home today'. Then the waiting starts. I have had more problems checking out of hospitals.

I have had the magic disappearing nurse - usually because they are with another patient. I am not in anyway saying nurses are negligent here. What I am saying is the checkout process needs to be reviewed and streamlined. I have had the doctor forget to sign the paper work. I have had to wait for a ride home as the check out time changed. It has always been a frustrating process.

Now it seems that this is finally reaching the news, here and here. Hospitals are examining their discharge or check out procedures. I think there are several areas that need to be reviewed (based on my vast experience). When a doctor is ready to discharge you, there should be a plan. They say you can go home and the nurse will be in shortly. Sometimes that can be hours later. Then they have to get paperwork and prescriptions for you to sign. There are post hospitalization instructions as well. You need someone, preferably your caregiver, to hear the nurse go through the instructions so you both understand what are warning signs to watch for and when is your follow up and what medications to take when.

Just because you are well enough to go home, doesn't mean you are well enough to remember instructions and think at the same time. Your only goal is to get home to your own bed where no one will come to check your vitals at 2 am or take blood at 5 am.

Enough of that, today I am excited. I am going to the beach again. This time with a friend. And it will be low tide. And it will be in the low 80s with low humidity and a few passing clouds. But I will do some work first. I will also have a little discussion with my back on how it is time for it to stop hurting. Yesterday it was most uncooperative and caused pain all day.

A highly regarded medical journal - Parade Magazine

I opened the Sunday paper this morning and found a copy of Parade Magazine which is covering cancer in America. I do not consider Parade Magazine to be a source of hard core news but every so often it surprises me.

I have read the majority of it already (its an easy read and I had a case of insomnia so have been up for a bit already) and found some interesting information. First of all they talk about how there are 12 million cancer people in America and many face long term issues that I am all too familiar with: fatigue, pain, cognitive impairment (a/k/a chemobrain), depression and anxiety, and other cancers. 25% of the people lucky enough to get cancer, are even luckier and get it a second time. (Its all a matter of attitude here.) I say cancer is the gift that keeps on giving.

They also talk about the imbalance in funding. More money is spent on breast cancer research than any other kind of cancer but more people die from colon cancer each year (40,000 vs. 50,000). Colon cancer research receives roughly less than half of what breast cancer research does ($599 million vs. $264 million). Thyroid cancer by the way, which is the fastest growing cancer currently, increasing at 6.5% annually, is barely mentioned and only on the list of top ten cancers affecting women each year.

I will say I thought Parade Magazine did a nice job with a concise overview of cancer these days. But there is a lot more behind it. If you want to find out more and how you can help, go to the American Cancer Society's website and you can find out about different types of cancer - diagnosis, prognosis, statistics, treatment - and how you can donate, volunteer, or find support.

The word for the day is 'pain'. I picked up the cat this morning and evidently I should not have. Ouch. It may have done me in for the day. This is not good.

Chronic - a word I dislike as much as cancer

The CDC has a whole set of programs to define chronic diseases. Wikipedia defines chronic disease as:

'In medicine, a chronic disease is a disease that is long-lasting or recurrent. The term chronic describes the course of the disease, or its rate of onset and development. A chronic course is distinguished from a recurrent course; recurrent diseases relapse repeatedly, with periods of remission in between. As an adjective, chronic can refer to a persistent and lasting medical condition. Chronicity is usually applied to a condition that lasts more than three months. The opposite of chronic is acute.

The definition of a disease or causative condition may depend on the disease being chronic, and the term chronic will often, but not always appear in the description:

* Chronic fatigue syndrome
* Chronic osteoarticular diseases: rheumatoid arthritis, osteoarthritis
* Chronic respiratory diseases: chronic obstructive pulmonary disease, asthma
* Chronic renal failure
* Diabetes mellitus
* Chronic hepatitis
* Autoimmune diseases, like ulcerative colitis, lupus erythematosus
* Cardiovascular diseases: heart failure, ischemic cardiopathy, cerebrovascular disease
* Neoplasic diseases not amenable to be cured
* Osteoporosis
* Cancer
* Chronic GHVD: intra-oral

Many chronic diseases require chronic care management for effective long-term treatment.'


I was told during cancer treatment that cancer is no longer treated as a terminal disease but as a chronic disease. At that point, I thought that was the better of the two options. I dislike the word chronic when it is associated with multiple conditions affecting my body (and life). I would prefer the word 'acute' which is defined as medical conditions which occur and go away (are healed). Terminal is not an acceptable word either.

Yesterday at the back doctor, I asked him what was the big picture and long term prognosis was with my back. He said that as we get older our joints get older and worse. My back problems start with my degenerating disks and I have all sorts of areas of inflamed nerves and pain areas. As we do each treatment, we find different areas of pain surface or previously treated areas resurface.

He did say I am doing all the right things - I take my medications, I do my exercises, I go for a daily walk, I have a memory foam mattress topper, I switched to a smaller purse, I don't carry things, and I keep coming back when in pain. There aren't many more switches I can make in my life that will help.

Basically, the doctor said its a chronic condition that is with me for life. However as we go through life our bodies change and there is a small chance that my body will change and the pain areas will abate. The goal is to offer me treatments that last a year or more for each area of pain so we will continue the injections of different sorts in different areas until my body morphs into a pin cushion, or we run out of painful areas (not likely), or I drop dead (what a pleasant thought). At least my back doctor is a nice guy with a sense of humor about this.

The next steps in my back saga are I was given a cortisone injection in my left hip and I will have a radiofrequency denervation (the nasty procedure where they kill nerves) in my right sacroiliac joint in a few weeks. I have already had two cortisone injections in it but it is still causing pain that is wrapping around into my right hip. The cortisone in my left hip is already working. Three years ago just before my breast cancer diagnosis I was told I had bursitis in my hip and no treatment was offered because of the pesky cancer thing that was deemed as more urgent.

I felt relatively good about my appointment yesterday but I ended up being there for more than two hours because of the injection and scheduling and preop for my next procedure which made me late for meeting a friend for a walk. Then my husband got home before we got back from our walk and we rushed off to the beach. It was absolutely beautiful - not a cloud in the sky, a light breeze, and the crowds were leaving so we had lots of space. This was followed by a dinner of steamed clams - yummy! It ended up as a very nice but full day. Just that icky word 'chronic'.

Call me confused

Okay, I admit to a tiny bit of chemo brain which has reduced my thinking capacity but I am confused.

Earlier this week there was an article about vitamins and cancer risk (again - just a different vitamin and a different cancer). Then there is another story about sun screen and cancer risk. That's just this week. Sometimes I think the way to reduce your cancer risk is to live in a cave and never move so you don't expose yourself to any risks... But then you wouldn't be getting exercise which is needed to reduce cancer risk or sun shine which helps with Vitamin D, but sun exposure increases skin cancer risk. See, its just so confusing. I give up. I am going to do what I want (now there's a change) and ignore all the advice.

This morning I am going to 'work' from home. I really have a couple of hours of work to get through. After that I am going to the back doctor, a friend is coming over for a walk, and finally my husband should be home early from work and we are going to the beach. Now that will be a nice way to end our week.

I have been thinking about my back doctor appointment. I think I need to talk to him about what we are doing with my back. I feel like its an unending series of 'oh it hurts there? Let's stick needles in it to fix that.' Then we go on to the next area of pain and stick more needles in, etc. I want to talk to him about long term what are we doing, are there other solutions, should we talk a break from needles for a bit, is there anything else going on, are the disks degenerating more, is there a way off this roller coaster, etc? This is confusing too (which further complicates my confusion problems...)

It was not a good day overall

Yesterday morning started off nicely. I went for an early morning walk and saw a fox (really) in the local conservation land. I had a nice meeting and then got some more work done so I felt productive. I even got hold of my back doctor's office and have an appointment to see him tomorrow - which is amazing. I usually have to wait months for him to have an opening. Then it all went down hill.

My big event of the day was the wake for a co-worker who died last week from cancer. He had ocular cancer several years ago and had been fine ever since. He went to the ER in early May with digestive issues and was diagnosed rather quickly with cancer in his liver - from his original cancer - but with a relatively good prognosis. They started chemo but he went downhill very fast. He was rediagnosed with fast growing, incurable cancer in his liver and he died last week at home with his family. It was six weeks from diagnosis to death. He was even in the office two weeks before his death. We were all fairly shocked by the whole thing.

Anyway while I was driving to the wake, I missed my exit on the interstate, in the pouring rain, had to go 8 miles to the next exit to turn around. Then I drove home in rush hour traffic which put me in a wonderful mood. And there was road construction and more rain.

Once home, I started cooking dinner and opened the cabinet over the stove and about 20 ants came rushing out at me. They had found the honey and molasses. But ick, yuck, yuck! They were everywhere. It was nasty. We have had ants here and there since we lived here but never anything like that. Everything was take out of the cabinet and washed and returned to a clean cabinet with new contact paper (courtesy of my husband). We skipped cooking and had take out for dinner which resulted in a very fattening meal.

Today I am hoping for a better day. I want to leave for work around 7 and I can leave by mid afternoon so I can fit in my walk before a hair cut. No more ants!

I hate stress

Let me make this official and make it my motto: I hate stress. Yesterday was one of those days at work where I ended up working late, getting stuck in traffic and barely getting to a doctor appointment on time. Nothing like a computer transition at work that is easy and then isn't and you're dealing with a sales person on the west coast who doesn't react to the problem and says 'I have done this hundreds of times before and its never been a problem' and who doesn't return calls. But I did take care of most of the computers at work - except the two owners and one of their wife's. Oops.

I wanted to leave work around 345 so I could go for a walk before going to my doctor appointment. I left work at 455 which gave me barely enough time to get to my 530 doctor appointment, which was really at 520. And the first traffic report I heard on getting into my car was that there was a jack-knifed tractor trailer, at the exit I was going to. And by the time I heard that and tried to call the doctor, their phones were shut down for the day so I couldn't call to say I was late.

So I rushed to the doctor and barely got there in time. But then she said my ankle is about as healed as can be expected. I should continue to see it heal over the next six months and if it doesn't then she can go in and do surgery to clean it out (remove cartilage chip and clean up ligament tear) but she doesn't expect I'll need it. Whew! Was that a 'you are going to be fine'? I am not sure I recognized it since its been so long since I heard that.

Then I headed off home but it was too late to go for a walk. So I ended up sitting in the back yard for a little bit to relax. But I was definitely stressed yesterday and I needed my walk to relax.

I also spent some time yesterday playing phone tag with my back doctor's office. I will try again this morning. I will also call my boss back from yesterday and talk to him about how to fix his computer and the other ones. Tomorrow I will have to deal with them all again. I can't go into work today because of a commitment with my other job. But I will get my daily walk in first.

I don't know what is going on

Yesterday I was supposed to work from home. So in the morning I made hummus, 3 bean salad, did some weeding, went for a walk, and had lunch. I sat down with my laptop on my lap, feet up on the coffee table, TV on a recorded show, and feel asleep for an hour. I was so tired when I woke up, I then went up stairs to get comfy and feel asleep for another two hours. Yes I slept for three hours yesterday afternoon. I did not do much work as a result. And believe it or not, I actually slept all night last night as well. I don't know what is going on with this. I admit I didn't sleep that well on Sunday night but I never nap for three hours during the day time. Maybe a 30 minute snooze once in a while.

I did some research once I woke up and some of my prescriptions have the side effect of somnolence which is just a fancy word for sleepiness. But does that translate into three hour naps? Last week at work one day I was ready to fall asleep after lunch but I got up and walked around and was okay. I don't know. I'll keep track and if it keeps happening, I'll talk to my doctors. Once I figure out which one to call on this. That's the problem with lots of doctors - who to call. If you only have a primary care, its easy. But I have a primary care, medical oncologist, surgeon, radiation oncologist, back pain specialist, orthopedic surgeon for my ankle, meds specialist... and I am sure there are that I can't remember because its too early.

Yesterday I did breakdown and call my back pain specialist. I was supposed to wait until it was a month after my last procedure but after spending three days in lots of pain, I decided to call sooner rather than later. They will call me back and let me know what's next. I have a feeling it will be an office visit so he can press on the sore spots on my back and say 'lets stick more needles in you'. Sigh. I hate needles. But if the pain goes away that would be nice.

Clearly I am not in the group of cancer survivors who forgo medical treatment. What I find interesting about this is that the article says cancer people skip treatment because of costs. I personally think they should have factored into this the idea that cancer people are just sick of going to the doctor and taking meds. There is the desire to be a normal healthy person again instead of a pill popping cancer person. Just my two cents here.

Today I have to motivate and go to work. Then I am going back to my ankle doctor for what I hope is the last time. I may end up with more PT but it is feeling a lot better these days. I could have canceled but I do want to know when it should feel completely better. Its been 10.5 months since my nano second of stupidity and it would be nice if it was healed.

Exercise during treatment - its a yes.

I take a daily walk, I think I might have mentioned it a time or two. I started more than ten years ago and I didn't stop during treatment. I went for a walk daily. I didn't skip a day just because it was treatment day or I felt crappy. Maybe my walks got shorter and slower some days but I did get out there. Everyone encouraged me to do this. I walk on the treadmill at the gym if the weather is really bad. To skip a walk, I had to be hospitalized and then I would get up and walk around the halls (which is kind of depressing to walk in hospitals and see all the sick people).

Anyway, its nice to see some thing in the mainstream media about the importance of exercise during cancer treatment. I am currently walking 6 days a week.

Its Monday morning. I am eating oatmeal. We decided that one day a week we should have oatmeal so Monday mornings=oatmeal here. Its week 2 of this plan and its still working. I also need to work from home today and go for a walk (now there's a surprise). I also need to do some weeding. My back really does not appreciate weeding. I am attempting to weed in short stints of 20 minutes a day to stay ahead
of them but so far the weeds are winning. I know I have other things to do today but I can't remember what they are. Perhaps its time to start a list.

A totally unrelated topic

Probably like 99% of the world, I just started following the story of Abby Sunderland - the 16 year old who tried to sail around the world. I vaguely remembered hearing about her last year that she was going to sail around the world at age 16 and thinking 'why are people so worked up about her age?' I didn't think her age was the point - but shouldn't she be in school? I really don't think parents should take children out of school for any reason - like vacations - and to miss a whole year? I just don't think that's right, unless she makes it up when she gets back. None of this business of studying on her own and graduating with her class. (Not that I have any idea what she is doing with her education, but just my thoughts.) Anyway, I don't have kids - what do I know?

My back still hates me. Perhaps I spent too much time on my feet again yesterday. I met a friend for coffee and then we went shopping. We went to Marshalls and Off Broadway shoes and the AAA travel store. Then I went to the grocery store and came home and made lunch before going out for a walk with a friend. It only rained hard for one hour yesterday and that was the hour we were walking. We were soaked. We were so soaked that my cell phone that was in my shorts pocket got damp and stopped working while it dried out - that would have been a real tragedy if it died because I have had it just over a month. My new smart phone that is smarter than me. But I digress. By the time I got back home, showered, dried off, and changed my back hurt again/still. I had to sit down for a while to recover but it still hurt. It doesn't hurt in the areas where I had the latest treatments but in other areas. This morning it still hurts - enough so that at 530 I found a lidoderm patch to put on the worst parts.

I did have a successful pasta making event. It actually was easy and came out yummy. I'll be making it again soon. Maybe whole wheat next time.

I'm too busy worrying about this year to worry about next year yet

Apparently. now we need to start worrying about next year. The health care reform law has been passed (in case you have been sleeping in a cave and didn't hear about it) and now changes are due to start taking effect next year. So we are supposed to start thinking about that now. What if we have enough going on in our lives and can't worry about more change yet? I would prefer to wait until next year to worry about next year. So I will. I mean I know health insurance will cost more next year - it always does. So why worry?

Yesterday I forgot I was meeting a friend for lunch but then fortunately Outlook gave me a little reminder so I remembered in time to change my schedule a time. We actually had an awesome (and affordable) lunch at Nordstrom's restaurant. I highly recommend it. They do small plates, like tapas, for sharing. We had seared scallops with lemon risotto, crispy polenta with arugula salad, and crab cakes with remoulade. Yummy. We will go back.

I did get a manicure pedicure. I was considering yellow polish for sunny summer days for my toes but she didn't have yellow. I ended up with coppery brown instead. (Call me what you will but I would prefer to worry about and talk about manicures and pedicures than cancer and all sorts of medical ailments. My back hurts but my toes look good.)

Actually yesterday's big news was that finally my new lymphedema sleeves arrived. This means I now have four so I can wash three of them in the middle of the week and throw them all in the wash on the weekend instead of washing one EVERY DAY - which got old on the first day.

Today I am meeting a friend for breakfast and then another friend for a walk. I think I will make my great pasta attempt this afternoon. I have a recipe and a pasta machine. What else do I need? Oh, a plan - tossed with some fresh shaved asiago and Parmesan for dinner.

Another failed attempt to be a normal human being

Yesterday I was foolish. I tried to be normal. Now some of you may think that would be a real stretch as what I consider normal, others may consider far from normal but the point is I tried to pretend I have a normal body.

I worked all day and then skipped my walk (egad!) because it was raining and I ran out of time before going to my networking meeting. It was a good meeting and I met lots of nice people and brought home Ben & Jerry's for my husband. But in pretending that I was normal, I stood on my feet for an hour and a half. I came home and sat down and took pain meds and ended up going to bed early simply because I needed to lie down.

Today I am going to go for a walk this morning - sometimes that helps to loosen up my back. After that I need to go to work and then get a manicure & pedicure - the highlight of my day. But its Friday which means the weekend is here and I can relax. I do have more work to do at home and might possibly work over the weekend but prefer to give myself a couple days off.

Now this was a week where I did not have a doctor appointment. I was wondering why I had some much flexibility in my schedule. This coming week I go back to my ankle doctor for either the pronouncement of 'healed' or go back to PT. I'm kind of indifferent on this. Its no longer a major problem just a pain in the neck (really ankle) when I do things like walk. My doctor appointments seem to be spacing out more which is very nice. Does this mean I'm healthy again? Not really as shown by the fact that standing for 1.5 hours puts me in pain for hours.

But now I need to get my butt in gear and get organized for the day.

The other side of this cure business

This reasonable article tries to explain how these little advances are really bigger than they appear. But from the voices of people living with cancer, I have just one thing to say 'HURRY UP ALREADY!!! We are sick of waiting.' Forty years since the war on cancer began, and 29 years since I started dealing with it, this waiting business is a bit tiresome.

Enough on this tiresome cure/treatment business. Today is a rainy yucky day. The kind you want to stay in bed and read trashy novels and watch movies. Unfortunately I can't. I need to go to work. I can't wait to drive on the interstate on a rainy day with a bunch of idiots. And he high temperature will be 58 - welcome to summer in New England.

Yesterday I worked from home and then did some gardening. I went to the library and got a cookbook a friend recommended. I got a pasta machine at a yard sale a few weeks ago and I want to make home made pasta this weekend. My new goal. I have no idea why I am inspired to try to make home made pasta but I do. There is no reason to hope that this will be gracing our dinner table frequently. After one try, the pasta machine (purchased for $2) may never be used again and will be unceremoniously stored in our basement collecting dust until my husband convinces me to get rid of my 'crap' as he so graciously calls things.

Anyway, I digress. I need to motivate. But I am feeling lazy.

We get cured mice!

Recently there has been lots of hoohah about a vaccine for breast cancer. Um, this has proven to work on mice. Not people, but mice as in the things my cat likes to find in the middle of the night and bring them up to show us. Yes it is significant. Yes it may constitute a breakthrough but it is only proven to work on specifically bred mice. And no it does not mean that it will be tested on humans anytime soon. And if it makes it through the testing, it does not mean that we can expect to see it available for another decade. So in the meantime, we get cured mice and we can feel happy that generations of mice being healthy.

An additional note to consider is who wrote the article and why. Are they a professional who can cut through the medicalese and translate it into something that cuts to the chase and concisely recaps what is being announced? Or are they just out of school without a lot of experience? Are they working for the publication and impartial or are they being paid by the drug developer to help put spin on their research? It doesn't really matter as long as you understand where they are coming from. Go read this article about bad medical writing by Otis Brawley to further my point.

I will keep my little inner optimistic side that some day when I go to the doctor they will tell me about a cure for all that ails me. In the meantime, I'll let the cat chase the cured mice.

Blah, blah, blah, what!?!

I found another article yesterday on the internet. You must think I spend all my time looking for articles. I don't. I spend about two minutes looking to see if there is that long awaited breakthrough in the search for a cure. I used to spend longer but now that pessimism has set in, I only look for a few minutes because, in addition to being a tiny bit pessimistic about this, I realize that if the cure for cancer was discovered it would be front page news world wide - sort of like what we can expect when BP finally caps the damn oil well. But my optimistic side always makes me check around in case somehow it missed the front page editor's sight. I look around and then scan them and only read the ones that I think pertain to me.

Anyway, this article is optimistically titled 'Progress against cancer reported on multiple fronts' so I had to read it. Maybe its a cure for me. So I scanned it - results from the annual ASCO conference which I am dying to find out about that will be fully released later this week - lung cancer, breast cancer, and melanoma. Breast cancer made me realize I need to fully read it. Then I wished I hadn't as buried in the article is the cheery sentence:

'According to the Dr. Christopher Twelves, lead author of the study, 50 percent of women with breast cancer will have their cancer come back or spread, and for them, there’s no good cure.'


WHAT! 50% will have their cancer return or spread? How reassuring! NOT! This is not something to read unless you can visit your oncologist and discuss this. And this new treatment they are talking about would extend your life by 2.5 months. Ahem, if I am ever stage IV and have no quality of life, I am not sure I want 2.5 months more.

I think I need to erase this article from my tiny brain. Shoo, scram. I don't want to remember this!

And now for a completely different topic. Yesterday I had some interesting comments on my blog.

One of them is from someone, who didn't leave their email, about an annual nomination of mom's who are exceptional. Too bad I don't have kids but go visit their website if you want to know more. www.pinkpowermom.com

Another one is from a medical student who is working on a project to build a large, public access database of unbiased, anecdotal data about Breast Cancer treatments. Visit www.rateadrug.com.

Okay, that's my public service for the day. I have to get moving so I can go to work, for a walk, and then to a meeting. I'll be home about 12 hours after I leave. Yuck. I'll also just pretend that my back doesn't hurt because I might possibly have done a tiny bit too much yesterday.

On brains and being brainless

I was elated to read this article this morning. Well maybe not elated but relieved, happy, or something along those lines. Basically I can say that in addition to chemo brain my middle aged (am I really middle aged?) brain which can't remember taking pills but can remember the big picture of things. So more reasons that my short term brain is gone and I can go about my life happily in my space shot way.

Going back to that term middle aged, I remember as a child reading a book that referred to a 40 year old as middle aged. I thought 'wow that is really old'. From the other side of 40, I can say 40 is not old, 40 is young, 40 is a pip squeak, 40 still needs to grow up. In reality I am still 29, but 40 is not old. What are they saying now that 40 is the new 30? Well, if I'm 29, I'm still waiting to hit the old 30.

But I digress, its Monday morning and for once I have a five day work week. This means that this morning I am meeting a friend for coffee and then going for a walk and working from home. I think I even have a week without doctor appointments. I have to double check but I think that is the case.

Its going to be a wonderful day so perhaps I'll even go out and attack my weed problem. I did get out yesterday and pulled out the lily of the valley which were suffocating my poor strawberry plants and found that I have lots of almost ripe strawberries - now I have to see if I can beat the bunnies to the strawberries. There is a line of chewed strawberries on the little stone wall. Grrr... Maybe I'll let the cat out to take care of the problem. Anyway weeding makes my back hurt, Rats.

bits and pieces

I do not have a profound topic this morning. My mind (and yes I have one) is going off in a thousand directions (and I am still on my first cup of coffee) and has not settled down in a specific direction. I have lots of thoughts:

- There are two more studies out saying they have significant progress in treatment of lung cancer and melanoma. They claim they are significant steps, which may be true, but if you read the fine print, they only help tiny groups of people. We need a broad and significant step or two (or hundred) here...

- We attempted to be social and see some friends yesterday. It made me realize we have been hibernating for the past few years. Or perhaps we are like the Rock M Block Em Robots that take hits and keep on going. But it was nice to see friends and compare notes as we all age.

- My back hates me. I have decided this must be the case. I have been very nice to it and it hates me and causes a lot of pain these days. But no pain in the area where they burned off the nerves... But lower in my back and my right SI joint again... Grr.

- We are on day three of unhealthy eating. Friday I went to the local Greek festival which is known for its amazing food and brought home a yummy meal. Yesterday we went to the party and ate all sorts of yummy (and fattening) things. You are doomed if you sit next to the coffee table of appetizers and snacks. Today we are going back to the Greek festival for lunch.

- My mosquito bites no longer itch but are still visible. I look like Dracula went wild on my neck. Perhaps I should avoid any medical appointments for the next few weeks until they fade away - or I'll get some kind of lecture about taking care of myself better (the kind of lecture I just ignore).

- There is a strawberry that is almost ripe in the garden. Will it ripen completely or will some *)&&(^&%^^% little woodland creature eat it before I can? I have been growing strawberries for five years and never eaten any from my garden.

- The cat really needs to learn about weekends and let us sleep a little later. There is nothing wrong with dry food first thing in the morning.

- Someone needs to check on scheduling policies at the hospital I am treated at. I saw the dietitian last week and she said she would schedule a follow up on a day when I was coming back for other appointments. On September 8, I have 1030 blood lab appointment and an 1130 oncologist follow up. The dietitian was scheduled for 1100 - right between the two, four floors away and 1/4 mile of hallways in the middle. I'll call Monday to fix this.

- BP now claims that they are solving the problem of the leaking oil well. I'm not buying it until I see a live feed over the course of several days showing the capped well not spewing plumes of oil.

- I did read an article recently on the giant oil disaster in Iraq and Kuwait in the first Gulf War where millions of gallons of oil spilled from the wells that were set on fire but that area returned to life within a few years - by 1994 I believe.

- I really need to do some weeding in the garden today but its supposed to rain so perhaps I can put it off for a few more days.

That's all that fits in my brain this morning.

An annual event that I haven't decided on

We have reached our annual event for the fourth year in a row and I still haven't decided how I feel about it. We have an out of pocket cap on our health insurance that once we reach it, we no longer pay for anything medical for the rest of the year. Our insurance is set up so we pay a co-pay for office visits and then 15% of covered expenses until our out of pocket maximum is reached. We reached it on Thursday, or earlier in the week. Probably the bills from my latest back procedure kicked our expenses up to this level. I'll find out in the mail in the next day or two.

In 2007, it kicked in two months after my diagnosis. In 2008 and 2009, it kicked in over the summer. This year its late May/early June.

I am ambivalent on this. It means we are sick enough to reach this. But it means my personal cash flow will be greatly improved for the next six months. Those co-pays and 15%'s add up quickly. There was a period of my life where I only cared about the $300 annual deductible. I think I would prefer that.

Anyway, today I wanted to catch up on my weeding but its raining. I wanted to go to a few yard sales but its raining. We are going to a party that will no longer be outside because its raining. Nothing like a rainy weekend after beautiful weather all week - except for a few thunderstorms here and there. My weeds will wait. I am sure the yard sales will take place next weekend. The party will still be fun even if its inside.

I jinxed myself

Yesterday I said everything was feeling okay. I jinxed myself. Well by the end of the day yesterday, my back was killing me, my arm was feeling funny, and I didn't sleep well last night. Wah! I took a pain pill last night and tried to get comfortable to sleep.

There is nothing more infuriating than going to bed and listening to your spouse fall asleep in less than five minutes and an hour later you are still listening to him. Then I woke up around 3 and was awake until 4 and then around 5 and then I got in another tiny snooze. Add in a few hot flashes and a headache and I feel just ducky today. I think I will just go with the 'I'm fine and ignoring everything but might be a touch crabby'. But I'll go work by myself for the day so I don't have to risk being a crabby co-worker.

Actually though it is Friday and the weekend is approaching. I am working today and meeting a friend for a walk. This weekend is also the local big Greek festival. I will walk over this afternoon and get us some dinner - the lines after 5 pm go down the block but if I sneak in early, we can enjoy it at home. We are going back on Sunday for lunch with a friend. Tomorrow we are actually going to attempt to be social and go to a party in the afternoon. I have to fit in some weeding as the weeds are taking over my garden. Unfortunately the weather may not cooperate.

Maybe I'll take a nap before going to work today.

Tiny bits of optimism

Yesterday I went to the dietitian. I only went because I thought that basically dieting was not going to work for me and I was going as a courtesy to see if she had any grains of enlightenment to share with me. Well, how about a surprise of actually losing 6.3 lbs (thank you digital scale for that extra 0.3lbs) or about 1/4 of what I wanted to lose. This means that I can continue to hope to actually lose some weight although it might take me into next year to lose the weight I want.

I do want to say this is not really a diet but a lifestyle change. No more fattening snacks, paying more attention to fat grams, etc. I plan on continuing this and watching more weight go away. Also, weight loss should help with my back and ankle problems.

I think I have gotten into a rut of always expecting bad news from doctors, never really getting the all clear or worse and then more tests, procedures, and other not-so-fun medical adventures. I seem to be in a streak of actually getting some decent news. I don't have to have ankle surgery. I did have a good mammogram. I did lose some weight. I have fewer doctor appointments scheduled - more like two a month instead of two a week. My lymphedema is behaving itself. My dentist appointment even went well. Finally my (damn) mosquito bites are less itchy.

There are somethings that are still looming and other things that will never go away - unfortunately you can't erase cancer from your medical history - but I am feeling more optimistic. My medical problems aren't running my life right now.

So now I can take my optimistic attitude over to my other computer and do some work before going into work (after I do my damn exercises) and then for a walk - hopefully without getting rained on today. And I have home made gazpacho for lunch. Yum!

Aggravation issues

First happy birthday to my blog - its 3 years old today. Which means I am three years out from my breast cancer diagnosis. This has been one heck of a ride but I'm still here and still blogging - thanks for reading!

I came home from work yesterday and decided I was very aggravated and stressed out. Grrr...

1. Itchy mosquito bites make me cranky.
2. Job #1 had work deadlines and I was trying to squish in too much work yesterday and hence ended up rushing and am not too happy about the way everything came out.
3. Job #2 has deadlines that are now past. I hope to finish today but am not sure I can.
4. Itchy mosquito bites make me cranky.
5. I ate my own cooking for lunch and it did not sit well in my stomach. I hate it when that happens.
6. Thunderstorms while driving home from work on the interstate.
7. Itchy mosquito bites.

I tried to solve it all by going for a walk between rain storms. It started raining again and I got soaking wet even though I was wearing a rain coat. I came home and made a cup of tea to warm up. Then I had a hot flash and and was overheated. Triple grrr. Life goes on.

Today is going to be a fun day. It starts with an 8 am dentist appointment, then I have to run an errand and return some things I bought before the 30 days are up, then I get to go to job #2 and pick up materials to finish said deadline on this project, and then I go to the dietitian, and then I go for a walk, and then we go pick up the cat from my parents (always an endeavor) and hopefully Walter's new computer will be there too. No I don't have enough to do these days.

Now about the dietitian. I am going back to see her to see if she has any secrets to tell me. Basically if I starve myself at 1200 calories a day, I can lose tiny bits of weight. But I like food too much. I like cooking as well. I tried and didn't really lose weight and didn't like the food I had either. This wouldn't be a short term change, it would be a permanent change and maybe I would be a tiny bit skinnier but I would be eating boring food.

I am going to bring in some lists of what I did eat. I did learn from writing down my food online at Sparkpeople.com but I feel like there is not much else to learn. My medical history and medications make losing weight a near impossibility so maybe it is really good by to my size 8 wardrobe. But maybe there are other things I can do. This could prove interesting.

Did I say my mosquito bites are itchy? And I have an 8 am dentist appointment?

A breast cancer vaccine BUT...

Of course, there is a new medical announcement that has a big fat BUT at the end of it. Yesterday it was announced that a breast cancer vaccine has been developed that looks very promising BUT:

- it has only been tested on mice so they say 'if it works the same way on humans...' and that is a big IF
- it targets an antigen that is present while lactating so it would primarily be used in women over 40, so what about the women under 40?
- it will not cure breast cancer once you have it.

So, while it looks promising and is yet another significant breakthrough, it still has a long way to go. There is no way of knowing it will work as expected with people. And then would need to go through the FDA approval process and be manufactured for mass distribution. So while one can be cautiously optimistic, it is not a cure.

So anyway, back at the ranch of life in cancer land and bad backs, I survived a weekend of camping with my husband, brother, and his four children, and had fun but did spend a significant amount of time taking pain meds and even took a nap because I took my pain meds. (I am waiting for a cure for mosquito bites as well.) I was a very bad person (and don't tell my doctors) but I didn't do ANY of my exercises all weekends. I did take my pills but didn't do my exercises.

I did also develop an unexpected side effect of lymphedema. The lymphedema sleeve tan line. I am not kidding. I was told that I should use sun screen under my sleeve to prevent sun burns which would aggravate my lymphedema so I assumed that the sleeve provided zero sun protection. Well, apparently it does and now I have a little line around my wrist at the border of my sleeve. Gee, thanks. Another side effect. (And a side note to my brother and husband, yes I had to blog about this. They enjoyed themselves this weekend by picking on me about my mosquito bites and tan line.)

Today I have to do some work from home and then go to work and then meet a friend for a drink - in an attempt to have a social life. It will be a long day but fun in the end.