What was this supposed to do?

Today I am off to the pain doctor to talk about next steps because of my new areas of pain. Well, they aren't new areas, they have been there but since other areas hurt more, I could ignore the other ones. Now these hurt more, the others that were treated hurt less, so off we go.

The other topic of conversation is to discuss the healing time and issues required from my last procedure at the end of July. I have been wondering about this. I realize I have been a little lax about making sure I understand what a procedure was supposed to do and what the healing period would be from it. You would think I would have learned by now that I need to make sure I understand these things.

Here's the process, the doctor tells you s/he recommends this next procedure ('fun' medical adventure with needles that might leave scarring). You listen for a minute or two and agree. They get the scheduler in to pick a date, you sign a release and wait for your day. But wait, why are you doing this? What is this going to cure/resolve/prove? What are the risks? What are the benefits? What is healing time if any? DID I ASK? No.

Now there is a study out (I swear there is a new medical study going on all the time - your tax dollars and medical dollars at work) that says there is a disconnect in doctor-patient communication. I think I agree. The article is blaming the doctors for this but I am not sure its actually all their fault. It takes two to tango as they say and I think the patient has equal responsibility to learn about their next medical adventure before it happens (unless it is done on an emergency basis and is being rushed).

I think I need to make a little list of questions to be asked before the next procedure, whenever that may be (but could be scheduled as early as this afternoon when I see the doctor):

1. What is this going to do? What is the goal of this?
2. Why is it right for me?
3. What can I expect after this? Is there a healing/recovery time period?
4. How long until I feel the benefits of this?
5. What are the risks of the procedure?
6. What else do I need to know before this procedure?

Now I am sure this is just a rough start but I should come up with a list of questions that I want answered before the procedure takes place. Its my body and I should make sure I understand.

Planning on being remembered

We all get our 15 minutes of fame - some people's 15 minutes drags on more than other's. We are born and go through life and then we die. Some of us will be famous and have buildings or city intersections named after us. A few generations later everyone will wonder 'why was it named after them?' unless the person was REALLY famous. Most of us go through our mundane lives and at the end life goes on for everyone else. The space we filled in their lives is taken over by others in time. It is left to us to decide how to be remembered.

If we become the one to set a new record - oldest cancer patient to climb Mt. Everest (not me!) or beat Lance Armstrong's record of winning the Tour de France (really not me!) - there will be a record in life somewhere publicly. But how do we want to be remembered by the one's who really know us? With some planning, we can do this.

This young mother who died yesterday of cancer made a point of leaving a record for her children. Randy Pausch made a record for his family as well - his Last Lecture.

My point is plan ahead before its too late. A photo record, a video, a blog.... Not necessarily a legacy, but merely a remembrance. We are in control of our own lives.

Increasing health insurance costs

This does not surprise me at all - Employers are pushing health insurance costs onto employees. I think we my have reached the end of the era of cheap health insurance through employers in the US. Just like we reached the end of the era of cheap gasoline in the US when oil hit $80/barrel - but that's another post.

But its not a surprise to me. And I am not including anything here about health care reform. As health care costs have gone up over the years, insurance companies have been raising premiums accordingly (and to cover their overhead when they find that people have the gall to visit the doctor and get treated). Employers, already strained by a down economy are forced to negotiate the premiums with insurers and cut some coverage, increase co-payments, and still premiums go up.

Yes a $20 copay that I have now is probably relatively cheap. It costs me $30 to see a specialist - like an eye doctor. And that's in network. And people tell me, it costs them even more for a doctor visit.

Actually I can't see why people don't understand this. Its a service that costs more. Until health care costs come under control, health insurance costs will continue to grow. Its not just an insurance issue, its a health care issue. We all will pay more.

Another reason to feel all warm and fuzzy

It turns out the elementary school I attended way back when is contaminated with PCBs. Apparently earlier this year, they found some PCBs and were going to remediate them but then they found more and are waiting for test results. It has been shut down for a week while they figure out what to do.

I did attend the school for six years as did thousands of other children in the neighborhood. It was a new school when I went there. Now it is one of the oldest schools in town and is due for renovation in the coming years I believe.

So I did a little research and found out that PCBs are pretty darn nasty and have been banned everywhere. There is a cancer link to them as well:

A few studies of workers indicate that PCBs were associated with specific kinds of cancer in humans, such as cancer of the liver and biliary tract. Polychlorinated biphenyls (PCBs) have been shown to mimic the action of oestrogen in breast cancer cells and can enhance breast carcinogenesis. Rats that ate food containing high levels of PCBs for two years developed liver cancer. The Department of Health and Human Services (DHHS) has concluded that PCBs may reasonably be anticipated to be carcinogens. The EPA and the International Agency for Research on Cancer (IARC) have determined that PCBs are probably carcinogenic to humans. PCBs are also classified as probable human carcinogens by the National Cancer Institute, World Health Organization, and the Agency for Toxic Substances and Disease Registry. Recent research by the National Toxicology Program has confirmed that PCB126 (Technical Report 520) and a binary mixture of PCB126 and PCB153 (Technical Report 531) are carcinogens.

Hmmm... could this be what caused my breast cancer? Well they don't know for sure. I am sure that I have been exposed to numerous other carcinogens in my lifetime but this is just another reason to feel all warm and fuzzy.

But I can't go through life thinking of the 'coulda, shoulda, woulda' things that I did or didn't do. Basically we are exposed to carcinogens throughout our lives. We eat and drink the good things and the bad things. We get sun tans and sun burns. We are exposed to cigarette smoke even if we don't smoke. Just because this school now has PCBs doesn't mean much in relation to all the other exposures I have had. All we can do is try to do what we can to minimize exposure to the bad things and not regret what has happened.

Struggling and juggling or juggling and struggling

So I am having a hectic few weeks. I am still feeling back logged from my last vacation and am about to leave on another vacation. I basically have too much to do between my two vacations. Isn't there a rule that for every week you are on vacation you need two weeks before and two weeks after to recover? I don't know but I am feeling the stress.

Like a normal person, I have job stress, pet stress, packing and planning stress. Both my jobs have HUGE deadlines to be done before we leave. Why both jobs at once? Because that's some stupid Murphy's law rule.

Next our cat has not been himself. He was my chemo buddy - and any other day when all I can do is sit there in a daze of chemo drugs or pain drugs and zone on the couch. He hangs out with me. He has liked me since the day we met because I made sure his diet contained all the foods he likes - not just the yucky dried food my husband used to feed him before I came along and messed up (improved) their lives. He has been 'off his feed' as they say. It turns out his bad gums (not bad teeth - he needs to floss) are red and sore and caused all sorts of ulcers in his mouth so we get the honor (of a twice daily battle) to insert one eye dropper of antibiotic in between his clenched jaws for the next week or so. After 2 doses he is already better.

Finally, we have to figure out what to take on vacation - what we can do vs. what we want to do taking health issues into consideration. How to carry luggage - or how my husband will carry the luggage and I will carry my knitting and my little purse?

Then there are the health issues causing stress. I have visit to the pain doctor stress on Tuesday, followed by visit to the oncologist stress on Wednesday and finally dentist cleaning stress (I hate the dentist - not the person the procedure) on Thursday. Is the pain doctor going to give me more needles or more tests? What about the oncologist - what if she finds something? There is always that option with an oncologist and when they find something its never good. An hour of having someone pick at my teeth with a sharp metal thing is not high on my list of fun things to do. I am also getting my hair cut on Tuesday and am running a meeting Wednesday night.

Oh and today my husband has the day off and wants to do fun things but I have all these pressures leaning on me. I will compromise. We went for a walk. I made him breakfast. We will go pick up some stuff I need for one of my deadlines. I will kick his butt (I hope) in mini golf and stop at the library on the way home. Then I will get some work done toward my deadline as the weather goes down hill and the hurricane breezes on by.

I am struggling to juggle or juggling in a struggle. I don't know which but I have too many balls in the air for the next week. Then I want to go on vacation and be lazy and admire the scenery and enjoy time with my husband.

More on lists

Yesterday afternoon I saw a list of 'Celebrities fighting cancer'. I ignored it but then wanted to go back and read it. But couldn't find it. I know it was on the internet somewhere. I tried googling it and came up with another list of celebrities with cancer - much longer, going back decades.

My thoughts on celebrities and cancer is, um, well, celebrities are people too and just because they are famous doesn't really change that much. They might go to the big fancy medical centers. They will have days where they are scared, nauseous, feeling the little pinch when they put in the giant needle, and have the same scans, tests, and procedures as the rest of us. They might be lucky enough not to have to worry about expenses their insurance doesn't cover.

We can't just list famous people dealing with cancer without listing all of the non-famous people dealing with cancer. My first thought was to have an anti-celebrity list of people with cancer where anyone could sign their name. But then, that list wouldn't be complete without everyone who is no longer with us who can't sign their name.

Cancer is a leveler. It doesn't matter if you are famous or not. Some days you want to talk about it, some days you don't. Some days you spend too much damn quality time in the waiting room between fun interludes with needles and machines.

One few thing we all have in common is a desire to see a cure. To reach a day where you go to the doctor and they say you have cancer but we'll do this and you take this for 30 days and it should be gone by then. It seems everything that is out there 'reduces tumors', 'impedes tumor growth', 'reduces spread', or 'extends life for two to four months'. Those aren't cures. Those are slowing the progression. A real cure is one that removes it from your body for ever.

Twenty years ago Lyme disease was the scourge of southern New England, affecting dozens. If you were bitten by a tick carrying Lyme disease you were destined for a life of arthritic like pain with no cure. Now they give you antibiotics and you're done. That's what I want in a cure for cancer.

The list I want on cancer is a list of type of cancer followed by actions done to cure it. Not a list of staging and prognosis for each stage and treatment options. Just a cure. Am I asking too much?

There is a hurricane coming

It is so exciting! It will be a big rainy, stormy day and then we can all compare beach erosion. Unless you live on the beach in which case, you need to move out for a few days. Or your boat is in the water and is in an unprotected area and yo need to move it out of the way. (If you aren't sure, ask people who have had to helicopter their boats out of the marshes back to the harbors after the storm surge.)

We are watching continually updated storm projections including the famous 'spaghetti' plot (I'm not kidding - that's the technical term) where all the computer models of the storm track are put on top of each other - and it looks like a really bad road map or a storm track.

I am no expert but have seen a few hurricanes in my life. There was one when I was a child and my father took us up to watch the wind and the waves roll in through the Harbor. My sister and I spent the time holding our arms out while dressed in our big yellow rain coats to see how far down wind we would be blown each time we jumped up in the air. (I don't think we moved that much but it was better than looking at the harbor.)

I was in Eleuthera in the Outer Bahamas at a Club Med when Gloria breezed on by. In true Club Med fashion, they told us if the hurricane hit to please pay attention to what they say, we would find a mask and snorkel under our beds, and if you wanted to be moved to a room on higher ground, please let them know. I had a room with a lovely ocean view. I took a nap that afternoon and when I woke up the ocean was much nearer than it was in the past. I was told I had to move my room. We then spent our proposed hurricane evening in the bar. Gloria missed us but managed to shut down the entire Eastern Seaboard. Our only request was to be able to stay for another week while they cleaned up the mainland. That Club Med is no longer - as it has been wiped out by other storms and is no longer any resort. It was a beautiful place.

Around 1990, Hurricane Bob blew on through Boston. I worked for a small business and she made us come to work that day because she assumed we could work through a little storm. When all the other buildings in downtown Boston started taping their windows she told us to tape the windows and leave. We spent the afternoon and evening hanging out with my roommate's friends at our apartment in the big complex I lived in. We picked the wrong apartment - we were in the half of the complex that lost power overnight. All his friend's went back to their units and they had power - even though they lived a mere 100' away.

There have been a few others here and there. To be honest, they all start to run together. We get hurricanes which make the national maps and news. We also get northeasters (not nor'easters - my parents who grew up here call them northeasters, all these transplants from other parts of the country think they are cool and call them nor'easters). Those can be just as bad as hurricanes, they form offshore and grind up the coast for a few days. The winds are often hurricane force. They occur year round. They result in a several days of bad weather regardless of the time of year. Hurricanes usually come and go in a day. We also get plain run of the mill blizzards - my husband and I have a running joke of what's the difference, when driving in it, between a blizzard and blizzard like conditions. They can also last for a few days.

All this weather is just a distraction from my health. I survived one oncologist on Monday and the dermatologist yesterday. Next week I have my other oncologist and the dentist (spending this week flossing like mad). I am waiting for the back pain doctor to call back about next steps. But in the meantime, I can tune into hurricane models being updated every two hours