A non-message

When I was first diagnosed with breast cancer, my doctors told me to be very careful of information found on line other than at the American Cancer Society's website (www.cancer.org) and at Breast Cancer.org (www.breastcancer.org). If I need information, I still refer to these sites.

The ACS's website is full of clinical information on all types of cancer in a somewhat dry, factual presentation. Breastcancer.org has clips of the latest news in the breast cancer world with little translations on what it means to the average person. It also has a wealth of information on many facets of breast cancer diagnosis and treatment.

But today I found a piece of non-information on their home page (www.breastcancer.org): Their founder was diagnosed with breast cancer. She posted a video about her breast cancer journey. Its a non message. She does not say what her treatment was - we can infer that it did not include chemotherapy because she has her hair - she just says that it was a personal treatment plan that was specific to her and it wouldn't apply to anyone else so she wasn't going to tell us.

Dr. Marisa Weiss, President and Founder, Breastcancer.org from Breastcancer.org on Vimeo.

My first thought at this non-message is that she followed a treatment plan that she would not endorse on her website. The way she addresses it by saying that it was specific to her and therefore she wasn't going to share it because it wouldn't apply to anyone else destroys some of the credibility of her website. If it was that personal and is the first in a wave of truly personalized medicine, wouldn't it be appropriate to talk about it? I have no idea what it was but I find it evasive and I find the evasiveness of her lack of an answer a detraction from the depth of her website.

Its a non-message and a non-answer that should be explained in full. This is a missed opportunity to explain how, from the founder's point of view, that now she is in the same boat as those she has tried to help over the years. A missed opportunity and reduced credibility as well.

Insuring sick people?

The beginnings of the new health care reform program are starting and apparently insurance companies are having to change the way they do business and start insuring sick people. Hmmm... Isn't the whole reason to have health insurance is in case you get sick?

I think a shake up of the insurance industry is a good idea. I mean there are people out there who faithfully pay their premiums and then get a nasty medical diagnosis and their insurance companies drop them.

Which makes me think a minute. Aren't insurance companies not supposed to know what your health issues are? It is fairly obvious. If first you submit a bill for a mammogram, and then an ultrasound, and then a biopsy, and then a consultation with an oncologist. I am sure they figured out that one. So obviously in this case, insurance companies are in the wrong for looking at what is going on with your health and then dropping you.

I am not getting on the political horse here to talk about the right and wrong of health care reform because this isn't about politics. I just want to write about the patient side of things.

I am lucky in that I have good health insurance and live in a state with many protective laws. But this really kills me when insurance companies say: "...insurers say the new rules could require them to cover too many sick children and too few healthy ones." Now the new laws are requiring them to change the way they do business - which I see as a good thing. What if you could only get health insurance if you were healthy? This has been a reality in some places.

Let's just hope that now sick people can get insurance.

Angry at cancer?

There are supposedly five stages of grief: denial, anger, bargaining, depression, acceptance. It is the process we go through when faced with a 'bad' thing - a death, a yucky medical diagnosis, or other trauma. I know I went through something like this.

Anyway, I recently experienced two events which made me think about this. The first one is I was with a few other cancer people and one of them said she was so angry about cancer and another agreed. I thought this was pretty shocking since I know both were diagnosed several years before me. Which means they have been angry for a long time.

Then a few days later I met a woman who said she had lots of friends who had had cancer and some of them were very angry about it which was upsetting to her. She was coping and doing okay and into the acceptance stage and all these others were just angry and it made it harder for her.

Anger is a nasty emotion. It creates negativity and stress - neither of which do much for quality of life. I think the one thing I learned the first time I had cancer is that I wasted a lot of time being upset about it. The second time I decided I was going to take care of me - first and foremost. It took time to work through it and cope with the roller coaster it brings but I think I am doing okay.

Its all a matter of attitude. I basically think I was lucky enough to get cancer twice - any other way of thinking is just stressful. But I also consider cancer the gift that keeps on giving. It is my way of accepting what I am living with.

But people with anger are just making themselves miserable. They are not coping and accepting. They are still fighting and exhausting themselves. Anger is a waste of energy. No cancer is not fun and it can be fatal. But it isn't always and we need to appreciate that we are still here.

Cancer creates bonds

Take two cancer patients sitting side by side in chemo or in a waiting room and they start comparing notes and talking. Who's your doctor? What do you think of the new nurse? You've been waiting how long? And then the conversation moves on to all sorts of topics. Cancer people don't just talk about cancer. But once two realize they have a lot in common, the talking begins.

Yesterday I did some shopping. I need a dress to wear to a Bat Mitzvah next weekend - and I can't remember the last time I bought a dress. But I went off on my mission. I saw a sign for a yard sale and tried to find it but to no avail so I gave up and went on to the stores. Two stores later I found my dress and a fancy sweater to wear over it. I headed home and went by another yard sale sign - this time I found it.

I wandered around and found a few containers I could use. There was a large book shelf full of books. I noticed several books 'The Breast Cancer Cook Book', 'Breast Cancer Fitness Plant' and a book on the Lebed method which I had been looking for but didn't want to pay full price. (Its an exercise plan helping prevent/reduce the effects of lymphedema.)

While paying, I asked the woman if she had had breast cancer. She said yes and we started talking. She said she got her support through a number of friends who had also had breast cancer. I told her where I worked that had support groups and other wellness groups for cancer people. She asked if they would take a donation of books and proceeded to give me all their books on cancer as a donation for the association.

I don't know her name and it was a moving sale so I'll probably never cross her path again. But a few minutes of conversation on a bond of cancer is all it took. And thank you for the books.

Transparency = credibility

Regardless of one's political beliefs, with each change in presidency there is an ensuing change in the way decisions are made and published. During the previous administration, the tone of any decision was often 'that's it, take it or leave it'. With the current administration, there seems to be a bit more of explanation of the why's behind it. Who knows what the next administration will bring.

In the meantime, the importance of clinical trials in FDA decision making is becoming more visible. And the openly published results and allowing for more discussion of the results and their meaning. This transparency allows for explanation of why the decision was reached but even more importantly it gives credibility. Instead of 'those bozos in Washington' type of thought process, we can learn how the decision was reached making us give some grounds to give credence to their thought process.

I have often commented on something needs to be done about clinical trials as well as on the issue of drug approval. I find this interesting as it seems the best way to make decisions is to add more brains, as in more people to look at the results and make their thoughts known. However the downside to this would be too many cooks spoil the broth and that more people might take more time.

But I applaud a change in the system at this point. There are problems in the current system. Is this the solution? Probably not. Is increased credibility a step toward change? Yes.

This will be an adventure

Last night we had a family dinner and went to a restaurant where we sat in a big wooden booth. My back did not like that. I was in a lot of pain when we left.

Today, can I take it easy? No. A town fair and I am organizing a booth. I will be there this morning and again this afternoon. Then a surprise birthday party this evening. Ow, ow, ow, ow, ow. I'll bring my pain drugs with me all day.

Flavor of the month

This month is childhood cancer awareness month, thyroid cancer awareness month, and I believe at least another cancer awareness month. But beware, October is no longer the month of orange and black for Halloween but Pinktober for breast cancer. We will be bombarded with pinkwashing events and deals. Well, whoop-de-dooh. What does this get us?

NOTHING. Cancer doesn't only happen in a specific month. Cancer happens year round. People are diagnosed daily with all different kinds of cancer. Cancer awareness is a good thing. In some ways I am grateful for it. Cancer awareness has reduced cancer from being the C-word to something that is openly talked about.

President Nixon declared a war on cancer over 40 years ago (which is the longest war in US history)... Betty Ford, and every other person who has openly said over the years that they have cancer, should be lauded for helping raise awareness about cancer.

Its not the flavor of the month. Its life for some of us. I won't be participating in Pinktober any more than I am participating in thyroid cancer awareness this month. I don't participate in any monthly activities because September and October are no different than any other day in my life.

Medication only works if you take it

Yesterday I had a long, stressful, tiring day. Then when I finally got home after 8 pm I realized the cause. I forgot to take my anti depressants. Oh, and my back was hurting. Well I forgot to take my pain pills. And I forgot to do my damn exercises. No wonder. Medication only works if you take it. I need to remember this.

I need to remember lots of things. I need to buy flour if I want to make bread - I finally remembered to buy yeast after about a month. I need to remember to make an appointment for the car to have an oil change. I need to remember some other things I forgot and therefore can't remember...

Today I am off to work and will be home in time for dinner. The past two nights I have had meetings which have made my days too long, tiring me out. I hope to have time to go for a walk today as well.

I need a brain sometimes.

The kitchen vs the institution

We think of a kitchen as a nice place where you can get snacks and make and enjoy healthy meals. We think of an institution, such as a hospital, as a place to get coffee that resembles brown water, powdered eggs with out seasoning, and rubber chicken, all served at room temperature. Well what if these were merged into a hospital which served tasty food, prepared nutritionally?

How is that for a concept? Availability of healthy food in your basic institutional cafeteria? Apparently there is a doctor in Oakland CA who is promoting this to the extent there is an organic only farmers market outside the main entrance to the hospital. The kitchen is beginning to be seen as just as important as the doctor's office in living well. Well that's pretty darn logical.

We see the return of healthy food everywhere, and now the debate is on the 'Frankenfish'. I find this to be just disgusting and don't think I'll be eating it anytime soon. I heard on the radio that this project has been underway since 1990 and that all the new Frankenfish contain some of the original 20 year old fish. And why is the image of a line of out of control robots keep popping into my head???

Well today is farmer's market day and CSA delivery day - by 5 pm there will be an overstock of vegetables in our house.

This is not news

Um, this is not news. This is old news so do we call it 'olds' instead of news? This is a report that early stage breast cancer patients don't need to have all the lymph nodes removed. And by the way, we are NOT victims - yes that word is used in this article!

I do not mean to focus on this article specifically (other than the use of the word 'victim') but I often wonder why news is rehashed and reaired and rerun. We all know some stories consider to evolve - for example this week Paris Hilton did admit the cocaine that she previously denied was hers is hers and Lindsay Lohan now has a warrant out for her arrest. (Maybe they can compare the issues of not having enough make up and hair care products in jail - a new reality series in the making???) But I digress.

Some stories are continually evolving - five months later BP has managed to cap that well - but others seem to be rehashed again and again. Did I read that yesterday? Probably... Its not your brain, its just the same story being reported again.

My favorite is they tell you at 5pm what they will have on the news at 11. Why don't they just tell you at 5 what they know instead of expecting you to wait six hours to find out. Most people will just opt to read it the next day online...

I think we are at a point where the capacity to air news has exceeded our capacity to create news. Continual 24/7 coverage of the latest natural disaster doesn't mean the snow is any deeper, the hurricane has created even bigger surf, or the earthquake devastation was any different than it was ten minutes ago. It means they tell us over and over again in case we were idiots or were taking a little break a few minutes ago.

This over capacity has created the problem that the viewer learns to blank out the reiterations of the same stories. Then the newscasters figure out they are being ignored and try to blow it more out of proportion and we ignore it even more - a vicious cycle is born.

Do we need a limit for the number of times a story can be rehashed and rerun? Or do we just learn to block it out? I don't know. But I do know in the meantime, no one should ever use the word 'victim' when referring to someone with cancer or any kind of illness.

To soy or not to soy - will it ever be resolved?

Soy products such as tofu, edamame, soy milk, (but not soy yogurt which is just foul - sort of like eating elmer's glue) and other items are supposed to be part of a healthy diet. We have soy burgers, soy chips, soy supplements, soy everything. We are told to look at Asian countries where soy intake is high and rates of Western illnesses such as cancer are much lower as our examples.

But then they tell us don't eat soy or soy supplements because there if you have estrogen positive breast cancer and some other cancers. Soy contains something that is considered a plant based estrogen that could be feeding these cancers. If you have an estrogen positive breast cancer, it could be fed by soy products.

This latest article states that Asians who are historically accustomed to high levels of soy in their diet should have no reason to lower their intake levels. But Western consumers who are not accustomed to soy products should be eat only a moderate amount of soy products until more is known and to skip soy pills or supplements until more is known about their effects.

So? What about those of us with Estrogen positive breast cancer? Do we get to eat soy or not? No mention here in this recommendation. So I will continue my soy avoiding ways for now until they resolve it.

The dark side of clinical trials

As I have noted before, the clinical trials process needs to be modified somehow to help reduce development costs for new drugs among other reasons. One of these reasons is the dark side of clinical trials, as I like to think of them.

Clinical trials sometimes are the last resort for cancer patients. They hope what they are doing will help future patients. I think they often assume that because they are in a trial they are getting the new drug and it will have some miraculous effect on them. But that is not the case.

Clinical trials are run as blind studies. Patients are randomized into different groups - two or three and sometimes more. One group gets the current standard in treatment that they are comparing the new drug to. The other groups get the new drugs or a combination of the new drug and another drug. This means just because you are in the trial doesn't mean you get anything different than you would have otherwise.

Here is the very sad story of two young cousins who both developed melanoma. One got into the trial and received the new drug. The other did not and the unfortunate ending did happen to him. This is the dark side - the people who do not get the new drug that might have saved them.

The article does provide an example of why the FDA is cautious with their approvals. The breast cancer community twenty years ago was screaming for the approval of bone marrow transplant for breast cancer treatment. But they were then found to be less effective than chemotherapy and even could cause death.

This is another example of why the current clinical trial process needs overhaul. But also shows the balance that must be made in comparing the efficacy of new treatments vs. existing ones and the caution with which they must proceed.

Call me a spaceshot

I know its been a few days since I posted but I am a spaceshot. We went on vacation (and I didn't say that before hand so the burglars out there wouldn't know). I did bring my laptop. The first two nights we stayed in a hotel with wi-fi. Then we went to my mother in law's house where there is no wi-fi (I even checked to see if I could poach off the neighbors) for a few days. We then went up to Lake Tahoe for a few days where we stayed in a very nice hotel with free wi-fi but I was brilliant enough to leave my laptop (and phone charger and ipod charger) at my mother in law's. How smart was that? I was off line and had to ration my use of my cell phone so my batteries wouldn't die.

But that wasn't the only thing I did. I managed to leave my camera battery and charger in our hotel in Tahoe. It was a good thing I figured this out before we got too far away so we could go back for it. I also almost left my sweater in a restaurant... We are now sitting in the airport and my husband isn't sure if he packed his cell phone or left it at his mother's house (so maybe we are both space shots). (PS He just told me I am captain of the space shots).

Another example of my lack of brain cells is that we went hiking along the shore of Lake Tahoe. Because my back needs breaks we actually both brought a book to read while enjoying the view. Then his platypus water container leaked all over his pack and drowned my book (which I just realized I left at his mother's house). His book only got slightly damp. The next day we went hiking again, and the water leaked again... we are buying a new platypus water container before we go hiking again.

Anyway, it was a great vacation and it was good to get away from the grind of work and doctor appointments. I only wish my back would cooperate. Yesterday it was very painful and I could not get comfortable in the car.

Today we are flying home (so burglars beware) and are sure the cat will be completely annoyed with us even though we arranged for babysitting for him. I think I have a doctor appointment this week but will be sure to figure that out when I reconnect with my calendar.

Dealing with limitations

I have been dealing with limitations caused by all sorts of fun health issues. I try to be normal and pay the price for several days. I define normal as doing things like going to a museum, staying up late, gardening, carrying anything, grocery shopping if I am not careful, and the list goes on. This week I attempted to go to a museum. It was a cool museum. I tried to be smart and sit down when my back started to hurt. Well that was on Sunday. It still is not happy even though I have new drugs.

For me the real problem is five years ago, I had no real health problems, other than cancer once. I used to bike ride, ski, kayak, hike, roller blade, snow shoe, go to museums, garden, stay up late sometimes, carry things, grocery shop, and more. Most of these I pretty much can't any more without paying the price. I even gave my bike away. I think my roller blades and skis are next - they are collecting dust in the basement.

The issue is I can't do all the things I used to do and enjoy doing them. Now if I try, I end up in pain which comes and goes for several days. Its a big transition to a sedentary way of life. I am not ready for this transition. People say 'well be glad for what you still can do' or 'don't fill your life with regrets about what you can't do any more'. Those are boring platitudes to make me feel better. Its hard to all of a sudden find you have to change your life when you don't want to.

I think my coping these days is not with cancer but with limitations. Which is worse? I'm not sure. Both are life long. But I'll suck it up for now and whine more later.

We need to change patient habits as well

Health care wastefulness has been detailed in many studies. But its not just healthcare that needs to change but patient's habits. Why are 28% of medical appointments done in emergency rooms? Emergency rooms are for emergencies.

Yes I know people go to ERs for a variety of reasons including the fact that they can't be turned away if they don't have insurance. And until we do have healthcare for all, this will not change, but if you have health insurance, there is absolutely no reason to go to an emergency room unless it is an emergency.

I know I have options if I need to see a doctor. I can call my doctor's office and ask for a same day appointment. If my doctor can't see me herself, there will be a designated doctor for same day appointments who can. Then my hospital also has a walk in clinic for non urgent care that I can go to. Finally, in the next town there is a walk in clinic if I am desperate. But if there is an emergency, such as ruptured ovarian cyst (been there, twice), I can go to the ER.

My point, and I need to have a point, is if you have medical insurance you should know your options for getting quick and appropriate medical care when you need it. As patients, we have just as much responsibility for reforming health care as politicians do.

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In the meantime there is a possibility that I overdid things yesterday. I attempted to be a normal human being. My back hates me. But that's another story for another day.

A really cool new government tool

If you are like me with a few billion prescriptions around, you occasionally look at one of them and say 'what is this one?' because its in the wrong place - like on the bedside table all by itself. There is the easy way of start opening prescription bottles and comparing it with the contents. Then sometimes a prescription changes - and you are going on the word of the pharmacy that its the same thing....

Well because of morons like me who cant keep organized and mostly for the millions of people who call poison control centers, the NIH and FDA have decided to work together (yes two government entities have joined forces) and develop an online pill identification database.

I checked it out and my big complaint is that the search only narrowed when I put in the imprint... So if you saw your child put a yellow pill in his mouth, you would have a very wide list to sort through unless you knew which bottle it came out of.

But I think its a darn good start - putting the information in the hands of the consumer.

Its been a year since the first Stand Up 2 Cancer

Tonight is another Stand Up 2 Cancer event. Last year there were dozens of celebrities who got up and showed their strength against cancer. The networks all showed the same show. They are doing it again tonight.

I think it is great what they are trying to do - raise funds and awareness for cancer research. But I am not sure one hour a year is the right way. American Cancer Society is around year round raising money, providing help and information and other resources to those in need. They are a 24/7 organization. Stand Up 2 Cancer is trying to help one hour a year. I would like to see them do something year round - not tv shows year round - but to develop some kind of year round presence. I haven't seen much of them during the year - just some post event PR last fall and some pre event PR in the past few weeks. I mean cancer is 24/7 and once a year isn't that much in comparison. But that is my opinion only. I won't be able to watch tonight's show but have put the DVR to use so I will watch it when I can.

I think I am finally starting to get back on the right sleep balance. Last night I had 5 hours of sleep, the night before was decent but I was falling asleep at my desk yesterday, and the night before that I was up all night long. Today I took a real nap and feel human again.

The things I learned

I learned yesterday never to assume that the doctor wants to hear everything that is wrong with you. The doctor cares about their specialty area. So even though I had a list of things for my oncologist, she said none of those sound breast cancer related so I should talk to my primary care about them if they continue. Fair enough. But she wants to see me back in six months - what happened to yearly follow ups? I'm still waiting for those.

I also learned yesterday that when a doctor prescribes medicine, you need to know if it is 'instead of' something you are already taking or 'in addition to'. I assumed 'instead of' and it was really a case of 'in addition to' so I had to refigure out my pills for the week.

Finally, I also learned yesterday I do not function well without enough sleep. I felt like I was walking around in a fog all day. Last night, I did get enough sleep and feel almost like a human being today. Almost, but not quite human.

A day of playing pretend

Yesterday I went to the back pain doctor. He listened to my latest issues (whining) and told me I have problems with my left SI joint - I could have told him that - and I have new neuro-muscular issues in my upper back. The current plan for treating them is to try Cymbalta instead of Lyrica for a few months. Then if I am still having pain, they will try some muscular injections to relieve it. After this is resolved, we will then go on to my left SI joint and start with a cortisone injection or two.

He did tell me to take Cymbalta in the evening as it tends to make people sleepy. But he also said that some people it tends to keep them up and if it does that to me, I should switch to mornings. I took it last night and then started to get very sleepy so I went to bed. Walter came up at 11 and I woke up. At 1am, I woke up again. Then I think I was awake every five minutes all night long. So today I feel SSSSOOOOO wonderful. The problem is I have a very long day scheduled and include a follow up at my oncologists office. I have a feeling my inner crabby b*tch may show through from time to time.

Also, my dilemma is do I take Cymbalta this morning on the assumption that it is what kept me up last night (and is only 12 hours from when I last took it) or do I wait and take it again tonight? I am opting for plan B here because I kept waking up either too hot or too cold, my back hurt, etc. If my damn back would stop hurting I might sleep better.

So today at the oncologist I will attempt to look wide awake and human. I might need to resort to make up... I have my list of questions for her. Maybe I'll even write down the answers so I don't forget.

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