Monday, January 31, 2011

Hot flashes can prevent breast cancer

Now that's a breakthrough - not for me! I only am enjoying hot flashes as a result of my chemopause and medications.

I had a hysterectomy six years ago and they left one ovary because it looked find and there was no reason to put me in menopause unnecessarily and I would go through it later, naturally. Well, along came breast cancer and chemotherapy. Chemo for breast cancer has a way of shutting down ovaries, sometimes permanently, and causing hot flashes. My poor little ovary was shut down. And I have had hot flashes since my second round of chemo in mid August 2007. They were worse when I was on Tamoxifen. Now they are slightly better on Femara but I still get them. If they will go away when I am off Femara, I only have to wait two more years. Gee, thanks.

But since I have hot flashes am I at a lower risk of breast cancer? Probably not since I already had it. These little nuggets of knowledge don't always help that much.

Sunday, January 30, 2011

Keeping clean

How do we get rid of the chemicals in our lives? Well, start with the stuff we use to keep clean - soap and shampoo, or look good - cosmetics and moisturizers, or protect ourselves from the sun. Why prevent skin cancer with a sunscreen which is full of toxic chemicals that cause cancer?

Environmental Working Group has this great database of products that touch our skin and rates them on a scale of one to ten as to their toxicity. I buy Dove soap because I have such dry skin and if I use it daily, I don't have itchy skin year round. Its a 4 meaning it is in the middle. I'll poke around and see what I can find to replace it - after I use up what I have.

I also use Trader Joe's shampoo and it is rated a 4... But contains Tea Tree Oil which is a no-no for ER+ breast cancer people. Drat. I'll find something new. I am almost out of shampoo anyway. I am cheap and was considering Burt's Bees shampoo - which are 4s or 5s and twice the price. On to another choice... I'll keep researching this one.

Well I need a better conditioner for my hair. The one I use by Pantene is rated a 6, which is a little high but Pantene has some others that are rated a 2... And here's one that is rated a 2 by Hugo's Naturals Vanilla & Sweet Orange Conditioner... but on closer inspection has 14 LINES of ingredients and one of them, right in the middle of the list, is rated a 5 and is a carcinogen...

This is complicated. I am going to research everything and replace them one by one. But it makes for a cleaner me and a cleaner world so its worth the effort.

Saturday, January 29, 2011

Getting in shape

This year I wanted to get in shape. I think I wanted to do this each year for the past several years. As we approach the end of January, I am still working on getting in shape. (Yes I know you don't wake up one day 'in shape' but you have to keep working at it.) And I am not happy to report that the 25 lbs that I have been working on getting rid of are still staying attached to me.

Well apparently there are several things I need to take into account.

1. I have to change what I eat - I am trying to do this. More fruit, more vegetables, and lean protein. I think I eat pretty well actually.

2. My workout isn't fun. Well actually it is. I used to try to walk every day. Now with my schedule and the snow on the ground, I have been going to my exercise class twice a week where I am the only student and the instructor and I chat through the entire class. I also walk more with other people instead of being out on my own.

3. I am only doing cardio - not true. See note about class above.

4. My goal is unrealistic - to lose 25 lbs, be able to bend without pain, and to have Michelle Obama's toned arms? Well I also want to be taller, thinner and younger...

So, maybe that article isn't what's wrong with my workout plan. Then I found this list of the 51 fastest fat burners. This isn't going to work for me either. I don't have the coordination or the ability for a lot of these. My physical limitations go into play here.

Because I can't get the flab to leave my body with my current efforts, I have so many limitations, and I have learned from my exercise class that some one on one with a professional might help me. I am taking the drastic results of joining an expensive gym.

I have belonged to the local Gold's Gym for the past ten years and used it off and on depending on my work schedule, health, etc. I haven't been there since last March when a session of treadmill for ten minutes and trials on three different bicycles and two ellipticals resulted in back pain and nothing else. I will cancel that membership today and stop by the new gym and join it on Monday.

This new gym is my last resort in getting in shape. If this doesn't work, I will resign myself to flabbiness for life. The secret to this gym is it is owned by three physical therapists. When you join the gym you get a one hour session for full evaluation and then you sit down with a physical therapist and they set up a custom exercise plan for you. Then every three months they update your plan.

I stopped by once just after I sprained my ankle and was rejected by them and told to come back when my ankle was healed. Its almost finally done. I think one more cortisone injection in March and I am finally done. A few weeks ago, I got some weights from a woman who has MS and recommended the gym for me. Then I stopped by the gym this week and two of the members recommended the gym to me as well.

Maybe I'll be able to post again in a few weeks that I am finally losing more weight and Michelle Obama's toned arms are in my future.

Friday, January 28, 2011

Hookey

Don't tell anyone but yesterday we played hookey. There was a snowstorm overnight and we, meaning my husband, had to dig us out in the morning. His office had a delayed opening until 10 am. He went out to shovel around 8. He went out and shoveled for an hour and then took a break. Then he went back out later in the morning. Eventually he called into work. Then I called in to the job I was supposed to work at and said that either I would be in by noon or, if not, they would see me tomorrow. I could have gone to work. But I decided not to. So it was a day of hookey.

So what did we do? We went out to lunch. We wandered around Barnes & Noble. We returned stuff to Macy's. We watched some TV together. I sorted some clothes. Then I met a friend for a drink. I did not do my exercises at all. I did not go for a walk (the bike path was not plowed). I took a day off. It was nice.

I think a day off from everything is important. I also wanted to see if my exercises or walking is having any effect on my back pain. They don't. My back still hurt. I didn't worry about doctor appointments or exercise class or PT or acupuncture. No appointments. No having to be anywhere at any time. We'll have to do it again but maybe we'll wait until summer when we can go to the beach.

Today I have to pay the price and go to work EARLY and stay all day. I will be tired and my back will hurt later too.

Thursday, January 27, 2011

Obesogens

What are obesogens? They are nasty chemicals like BPA found in lots of things that cause muscle and other cells to change into cells that store fat. They mess up our hormonal systems and do all kinds of bad things to us. Traceable amounts of them are found in 93% of Americans. Yucky.

The first round of advice is to buy organic and avoid pesticides and chemicals. Well that's what they have been telling us for years - eat organic. But the chemicals are found in everything from non stick pans, children's toys, plastic shower curtains, to plastic bottles, canned goods and cosmetics.

The second round of advice, also contained in the article, is that Congress should change laws getting these chemicals out of the system.

My advice is vote with our feet and avoid chemicals. If I could afford it I would buy all organic food but its just too expensive to be perfectly honest. I would also throw out my non stick pans and buy stainless ones. I would skip canned food and buy all fresh. I don't use a lot of canned food these days other than canned beans (because the dried ones take forever) and canned tomatoes to put in food I'm cooking. (A question: if I buy canned organic tomatoes and beans does the organic part get canceled out by being put in a can?)

Could I eliminate plastic in my life? I carry a refillable plastic BPA-free bottle of water every day. This is filtered tap water which goes through a Brita filter (plastic) and put in a plastic pitcher in my fridge. I don't use plastic toys because I am a little old for that but I do use plastic knitting needles and plastic crochet hooks. I could throw those all out and buy bamboo ones. The cat has plastic food dishes. He's 16 year old (or 82 in cat years) and at this point his food dishes will probably outlast him (sadly). Does he need new dishes? These are the first dishes he has had that he can't push across the floor and are the right size for him.

And everything that gets thrown out will, at least partially, end up in a landfill or get recycled and reused in a third world country - and when that happens we are just sending our problems to someone else. That's sort of like sending the garbage in New York to a landfill in New Jersey.

But back to obesogens as I have completely gotten off the topic and how to avoid them. I guess I'll try the organic route so more. I will also reevaluate all my plastic stuff and replace what I can when it wears out. Maybe I'll write my congressman too.

Wednesday, January 26, 2011

Snow - a different perspective


Around here the snow banks are piling up significantly and there is another storm due for tomorrow with another 6-10" of winter fun. Just after Christmas, I blogged about the snow storm. Well that was several snow storms ago.

A few years ago after a snowstorm I would be happy to go out and play in the snow - ski, snowshoe, etc. Now I can't. It makes my back hurt. And I am worried that if I fell skiing, especially down hill skiing, I would do more damage to my back. I did try snowshoeing last weekend and it was a success as I thought - it made my back hurt for a few days. But it was fun while I was doing it.

Last Friday's storm started in the morning and intensified and then moved out in the afternoon. My husband made it to work where he stayed all day. I was basically stuck at home. There is a difference between being able to work at home and being forced to work at home. Then I can't shovel to get my car out and go anywhere when it stops. I have to wait until my husband comes home and digs me out. I can't walk in loose snow as it makes my back hurt. I am trapped and at the mercy of others. I don't like this.

Tomorrow I am preparing to be stuck again. I do have work to do but I will have to come up with more projects or something. Today the storm is supposed to start in late afternoon and be the worst between 8pm and 6am. If the roads get cleared out I might be able to get to work in the afternoon. Yesterday I drove to work in the snow - with a lot of morons. I don't wish to repeat that anytime soon.

Maybe I should move some place warm. Maybe I just need a vacation.

Tuesday, January 25, 2011

Doctors get old too

About 15 years ago I had some digestive issues which sent me to a gastroenterologist who at the time I remember as thinking was getting up there in age. Then I went to see him again for new issues a few years ago and he was decidedly on in years. He didn't remember seeing me before but due to the intervening years, I wasn't surprised. He sent me off for some tests and saw me again and then more tests and saw me again. Finally when our conversation went like this, I decided it was time to switch to a younger model.

Me: Well what about my hiatal hernia?
Him: Who told you you had a hiatal hernia?
Me: You did.
Him: (Rereading the notes he had just written) Don't worry about it.

Well, the long and the short of it was that he needed replacement. I looked up his credentials on the hospital website and figured out with his dates of medical school graduation he was the same age as my father, or older. My father is now 82. You do the math. He has since retired. At one visit, I mentioned something to the person checking me in and she said they were all amazed he was still working but was only part time.

As doctors age, there are no checks in place to ensure they are still competent. I think there should be something like retaking drivers tests for elderly drivers. As we worry about doctors retiring and not enough primary care physicians, we also need to think about making sure all doctors retain their competency. I am sure there are some requirements to meet their state's medical board standards and keeping skills sharp but a long term, slow progression of losing the sharpness of youth, can be difficult to diagnose and report.

I am not a big fan of the young doctors who are still wet behind the ears. I think I prefer my doctors to have between 5 and 30 years of practice. Too young and I feel like their mothers. Too old and I feel like they are treating me as their child. I would rather be their peer.

Monday, January 24, 2011

Screening tests

Many health insurance companies already provide screening tests such as Pap tests, mammograms, and colonoscopies at little or no charge to patients. As part of the health care reform, they will be free to patients. The reason why is the idea to save money in the long run by catching things early.

Because of my lovely medical history, I have had annual mammograms since I was in my 20s. I was privileged enough to have a sigmoidoscopy in my 30s. I had a colonoscopy in my 40s. I am the model of early testing. If I hadn't been having mammograms for so long, my breast cancer would probably be far more advanced when detected.

My husband got a pass by his doctor at 50 to wait a year before his first colonoscopy. At 51, he had a malignant polyp. He didn't want to have one. Now after what he has been through he says he would rather have a colonoscopy every year than go through surgery again.

Apparently only 63% of Americans over 50 have had a colonoscopy. And the reason is they are scared. Well, if I had skipped all my screening tests, where would I be? If my husband had skipped his colonoscopy, where would he be? Dave Barry summarized this a few years ago and it is worth rereading.

At this point in my life, I am so sick of going to doctors. I am no longer a patient patient. But I still get my screening tests. I just wish I could go for one day and have them all and then get all the results as well. That would be the perfect medical system.

Sunday, January 23, 2011

Connecting with other people with cancer

Once diagnosed with cancer, you start meeting others. We are all members of a secret club and are happy sharing our stories with one another. As a blogger, I read other cancer blogs from across the country and beyond. Other bloggers read mine as well. We never physically meet but we become friends. We are one another's support group in a world connected by wifi - bits and bytes flying through the air around us.

We are always there for each other. Last year one of my cancer friends died. The anniversary of her death is this week. A woman from my first diagnosed support group three years ago went to stage IV about 18 months ago and is hanging on through chemo. These two women I knew. I met them for coffee, have friends in common, discussed our health issues with each other.

Yesterday another woman who was blogging her way through cancer died. She was fine until the middle of the week when her husband posted they had taken her to the hospital. Friday he posted they were making arrangements to move her to a hospice this Wednesday. She didn't make it to get to a hospice. Her cancer was first diagnosed in 2000 when she was 39 with later recurrences. She has been on chemo for about the last 2.5 years. She lived in Alberta with her husband. She had a bucket list. She will be missed.

Saturday, January 22, 2011

A Change I Will Be Glad to See

In Massachusetts, where we have some of the most patient oriented health care laws - no issues with pre-existing conditions for years already, mandatory health insurance, etc - cities and towns, like everywhere in the country, offer health insurance to their employees and are slowly going broke as a result. The unions have had the right for years to veto changes in health insurance. So if the cities and towns try to cut back on insurance or require higher co-payments or portion of insurance paid by the employees, the unions would veto it.

Some towns are currently paying 20% of their budgets for health insurance for the employees and pay for 90% of the insurance premiums. And the employees and retirees pay $5 co-payments. After decades of huge insurance premium increases the towns and cities are cutting back on services and thousands enjoy health insurance on the town's dime. Its not just employees but retirees who enjoy health insurance for life. And after 10 years of employment an employee can retire and keep their insurance.

The governor, Deval Patrick, who just was elected for his second term, and has announced he will not run again, has split with the unions on this. He wants the towns and cities to be able to change the system so that the unions can't veto changes to health insurance. This change will only happen if it is legislated and this is the first step. This system is an archaic leftover from times when health insurance was affordable. This is a system which needs change, now.

But there is also a caution here. As health care reform comes into play, we want to make sure that we do not overburden our federal, state, or city governments with the costs and we do not back ourselves into a similar position. The insurance companies who set the premiums should not be able to make a profit at the expense of our citizens or government. This will be a tricky line to balance - offer insurance to all and keep costs under control.

Friday, January 21, 2011

Living the cancer life

As a normal person, you go to the doctor for a thingy (warning lots of technical terms ahead) and the doctor says 'hmm, lets get an x-ray'. No sweat, you get an x-ray. The doctor says 'oh, its nothing, it should go away in a few weeks but call me if it doesn't.' You go about your life, you forget about it, you realize a couple of weeks later that your thingy doesn't bother you any more.

As a cancer person, you go to the doctor for a thingy and the doctor says 'hmm its probably nothing but with your medical history, blah, blah, blah, you should get a blood test, an ultrasound, and I'll call you with the results'. You wait, only a tiny bit stressed until you get the test results which are 'I want a follow up blood test and ultrasound in four weeks and if there is no change, with your medical history, blah, blah, blah, you need to see a specialist for follow up and probably a CT scan'. Your stress level goes to moderate levels until two days before the second set of tests where they skyrocket, your brain is going well down the path of 'what if'.

You grab your ativan and it becomes your life support system and gets you to your follow up tests and through the results where you meet yet another specialist to add to your 'posse of doctors' who says 'hmm... with your medical history, blah, blah, blah, I want to see you every three months for a year and if its stable, we'll stretch to every six months and go from there.'

What happened to that normal person? It heard the worst once and can't unhear it so its stuck in their brain and they become the cancer person who just hears 'with your medical history blah, blah, blah' and waits for the 'worst' again. And the doctors seem to know that once you get to be a cancer person, the likelihood is greater that you will hear it again.

Yesterday I went for my follow up ultrasound which was the follow up to the follow up of what was supposed to be a baseline ultrasound a year ago. It came back as stable but come back for blood tests in six months and an ultrasound in a year. This means its still big enough to be seen but too small to biopsy. It is more likely thyroid tissue which they don't like to see in people like me so they will take regular ultrasounds of it. Recurrences this far out are unlikely but not unheard of.

So now I have to recover from the ativan I have been living on for the past few days. (No I haven't taken that much - one a night for the two nights prior and one-half of one yesterday morning to survive the tests.) I really just have to get my stress level under control until I have the next trip in my cancer life which is in February sometime where I see my oncologist and will probably hear something about 'with your medical history we need to be sure, blah, blah, blah'.

Thursday, January 20, 2011

Look out - change ahead!

First - mental note to self - it may look like water on the road but it could be ice, which is slippery and will cause you to fall on your butt and cause bruises later on.

We have change ahead and of course there are protests - even though the changes should prove good in the long term. The FDA wants to change the way medical devices are approved. The current system was started in 1976. Times have changed since then. Any system based on information that is 35 years old probably does need a tune/upgrade/replacement. Think of it this way, if your kitchen was 35 years old with no upgrades in the meantime, you might need some new appliances and a coat of paint to say.

But of course the big drug companies are protesting the change. Their lobbying group said: 'they would make device reviews longer and more expensive, hurting innovation and endangering jobs. The group represents most of the largest device firms, including Medtronic Inc., Stryker Corp. and Johnson & Johnson.'

Of course they say that because they have to change and spend money to adapt their business policies. But one of the bigger problems with the 1976 system is there is a loophole that allows the approval of some items that slip through the process.


'The so-called 510(k) system for devices was created in 1976 to grant speedy approval to devices that are similar to products already on the market. It is popular among manufacturers because it is a faster, cheaper path to market than the review process for novel devices, which must undergo rigorous medical testing. Hip replacements and drug pumps are among the devices cleared under the system.'


So if a new device is slipped through because it is similar to products already on the market, but if device A went through the approval process and 25 years later and 25 new models later, how similar is the 25th generation product to the original device A? Your IBM selectric typewriter was approved in 1976 and now you are typing on your iPhone. What's the difference?

I see nothing wrong with change. Change is inevitable. We cannot stay the same and expect the word to stay the same. Technology has changed everything as well.

Wednesday, January 19, 2011

So what do you want?

No not at the drive through, but at the end. At the end of life. Do you know what you want? Do you want hospice care, do you want to fight until the bitter end, do you want to take the opportunity to die at home?

No one wants to die but its going to happen to all of us at some point. There is always the possibility we will be hit by a bus tomorrow and that's it. No questions on end of life treatment. Or you can get a terminal diagnosis tomorrow with 4-6 weeks left. So what do you want?

Apparently its not just for you but for your family members. If you have solid plans that are shared with family they do not have to go through the agonizing process. And it has long term effects in less depression in family after the death.

Funerals and deaths are all about those left behind. They may be for the dead but they really are for others still alive. So do your family and friends a favor and tell them what you want.

This is what I want - a do not resuscitate order, no last life extending treatments, I want to be peaceful and die comfortably - either in a hospice or at home. But first I will host my own memorial service - a big bash that I can attend with all my favorite foods (and if you don't like them, tough cookies), live band, dancing, and lots of fun. So in another few decades, look for your invitation to the party of the year. Then you all can figure out what you want to do after I'm gone.

Tuesday, January 18, 2011

The story without the happy ending

Life after a cancer diagnosis is never normal again. You live waiting to see if the other shoe will drop. Some who think they are cured are not. They are told 'all clear' and it does not mean there is no cancer in their body. It means there is no cancer detected in their body. There is a big difference.

There is a big bandwagon going on to raise cancer awareness. Thank you it is raised. Especially the pink bandwagon. We all know about it. In some ways I am grateful for all the bandwagons that have raised awareness - people now talk about cancer.

But there is another side of cancer - those with metastatic cancer - meaning it has spread to another part of your body. When cancer is staged, they look at several signs, which vary based on the type of cancer you have. They look at things like size of the tumor, lymph node involvement, and spread of the disease. If your cancer has spread to another part of your body - it has metastasized.

Once cancer has metastasized, your life is different. You live from scan to scan - CT scans are common. They don't worry about a lifetime dose of radiation from CT scans because you already have cancer and your life time is already shortened.

Here are stories of several women who have metastatic breast cancer. The difference for them is they were diagnosed with cancer that has already spread. All cancer patients live with the fear their cancer will spread and they won't have a happy ending.

So why is so little money of the amount spent on cancer research spent on metastatic cancer? 5% is the number that I think is correct. Cancer spread is what we are concerned about. This is why cancer patients get so much follow up - to look for cancer spread or recurrence. This is waiting for the other shoe to drop.

Monday, January 17, 2011

Thoughts on Complementary and Alternative Medicine

I was misusing these terms. Complementary medicine is used in addition to traditional medicine - like acupuncture. Alternative medicine is used instead of traditional medicine - like herbal remedies, prayer, etc.

I am not so sure about alternative medicine. I think they are outside my comfort zone.

Complementary medicine has made me skeptical in the past. But I think my horizons are expanding for many reasons. I joined a support group during chemo and someone suggested Reiki for stress reduction. I tried it once and it made me relax. I tried it a few more times but decided I didn't like the woman doing the Reiki so I quit. She actually had me try expressive arts as well. Which in looking back, was helpful.

I have several friends who have tried acupuncture, Reiki, and massage for stress and pain relief. I was a weinie and didn't try. Acupuncture involves needles of which I have never been a fan. Reiki I considered but never thought that much of it again. Massage I would do but I was told not to have any massage because of my back and lymphedema issues. Sometimes I would kill for a hot stone massage...

Now I am going to acupuncture regularly. I think it is helping me with stress and with relaxing more. I am not sure yet on back pain. I had acupuncture on Saturday and then Sunday afternoon and evening (and this morning) was in a lot of pain. But that could be from sitting through a movie yesterday as well. But I think acupuncture has its uses.

If I ever have more cancer treatments (I was going to say 'If I ever have cancer again' but since they never know if it goes away I decided that wasn't right) I will definitely incorporate more acupuncture and Reiki into my treatment. They would complement my other treatments. But on the other hand, why wait? Maybe I'll try it sooner. I guess I am a convert.

Sunday, January 16, 2011

Emergency Rooms

One of my pet peeves is the misuse of Emergency Rooms. They are not for people with sniffles, sore throats, etc. They are for true emergencies - allergic reactions to bee stings, heart attacks, appendicitis, car accidents, limbs dripping blood, etc. Personally I will not go to an emergency room unless I would die before my doctor's office next opened up.

The last time I went to an emergency room was when I was told by my doctor to go to there because I needed to be admitted due to low blood counts during chemo. I waited approximately 8 hours to get admitted so I might as well as gotten a good night's sleep at home and called my doctor in the morning. If that ever happens again, I will wait until the next morning and go see my doctor and get admitted that way.

I just read this account (not for the squeamish) of the Tucson hospital's emergency room after last weekend's shooting. This is what, unfortunately, emergency rooms are designed to treat. They use a triage system and if you show up for sniffles, you are going to wait. If you walk in with chest pains, you will not wait. Copious amounts of blood are also treated quickly, little cuts which need stitches get to wait.

Emergency rooms are designed to treat trauma. They are also mandated to treat everyone who shows up in one. This causes a problem because people without insurance know this and are forced to use them because they have no other access to care. Or you sprain your ankle on a Saturday night and you end up in the ER as well.

The problem is that this overloads the ER system who then are facing urgent and non urgent patients. The non urgent patients get treated eventually but they face long waits. They truly do need treatment but not at the ER level. But if there is no other access to care due to weekend, overnight, lack of insurance etc, they have no choice.

This is another example of where our health care system needs some changes. Where I am treated, they have an ER, open 24/7, and also a non-urgent walk in clinic - which is not open 24/7. The clinic helps if I have sprained my ankle and need to see someone, or a sick child with an ear infection needs to see a doctor. But after hours, there are no choices.

Work with me here, with national health care where everyone has insurance, what if hospitals had emergency rooms that were side by side with 24/7 walk in clinics? You go to the same part of the hospital and if you are dripping blood and need immediate care, you are triaged and seen by someone asap. But if you have a child with an ear infection or an ankle sprain, you are sent to a separate area where you wait with everyone else in order to be seen by a doctor for a prescription or to be sent for an x-ray.

We all need a place to go for the nanosecond of stupidity which results in a bump on the head or to talk care of the child who runs into a door while chasing a sibling but we need to stay out of the way of the car accident victims.

Saturday, January 15, 2011

Living in the 'all cancer all the time life'

I am a person living with cancer. But cancer does not run my life. I often do normal things - go to the grocery store, pay bills, go to work, talk to my friends, go on vacation, etc. Cancer people are real people. We talk about cancer with each other but we don't go up to people and say 'hi I have cancer, do you?'.

Yesterday I volunteered to help at a trade show by staffing a booth for a cancer related organization to help raise money for them. People came up and asked about our mission and talked about their experiences with cancer. They had it. Their wife just died from it. Their wife had it but did not die from cancer but from something else. Their sister, mother, father, cousin, granddaughter, etc., etc., had cancer.

When I was driving home, I felt emotionally drained. I felt I had spent a day in the all cancer all the time life. All I did was talk about cancer, my experiences, and their experiences. It was very difficult. When I got home I was emotionally and physically exhausted - even though I didn't even make it through a whole day.

When you are in cancer treatment, you still don't only talk cancer all the time. You rush to get to the doctor in time and hope you can find a (damn) parking space. You have to go to the grocery store, pay bills, etc.

But yesterday wasn't a throw back to being in treatment. It was different. I was in a special club of cancer people and wasn't sure I could take being there. I may need a few days to digest this one.

Friday, January 14, 2011

Ouch!

Yesterday morning I made a significant mistake. I tried to emulate a normal human being and pull the top blanket back over me (after being stolen by my husband) using my right arm. Don't ask. Why should I think I am normal? Instantly my left shoulder, on my shoulder blade blossomed into a huge wall of pain. I had to lie still and breathe slowly and quietly. It didn't subside. Finally I tried moving a tiny bit, and then a bit more, and more. I rolled over enough for my husband to massage it which helped. After taking a shower and running hot water on it, popping a pain pill and applying two lidoderm patches, I felt like I could survive the day. I did. I survived. I lasted the day.

Today I feel okay but there is looming pain in there. So what am I doing? I am going to stand at a trade show all day. I am sure I will feel wonderful tonight. This is complicated by the fact that my husband is not feeling well and was up all night (penance for yesterday's blanket theft?) and as a result, I was up several times as well. I feel wonderful.

Tonight we will have left overs for dinner. There are lots in the fridge and I won't have to cook anything. I am sure I will have back pain today so I will bring pain pills and lidoderm patches with me. As well as a lot of optimism.

Thursday, January 13, 2011

A 66% increase in cancer costs by 2020?

This is ridiculous. Studies are predicting between 39% - 66% increase in cancer costs by 2020.

The basis of their numbers make sense - aging population, increasing cancer rates, etc. We know about all that.

However all these breakthrough drugs that are now being used for treatment I would think would reach the end of their trade mark protection and generics would be available.

Obviously new breakthrough drugs will come through as well. But if there are more cases of cancer so more of the drugs would be needed, you would think that mass production would kick in sooner thus allowing drug companies to spread their development costs over more doses.

Drug companies say that new drugs are developed at a high cost and then are used to treat only very few. I don't buy it.

This is another example of how we need a new system to manage the costs of medications. Not just for cancer but for all diseases.

Wednesday, January 12, 2011

More ups and downs

I think I have been neglecting my health here for the past few weeks. I don't know. Sometimes I don't feel like talking about things because I don't want to talk about them so I can pretend they aren't happening or because I don't want anyone asking me about it. And its my blog and I can blog about whatever I want.

Yesterday I went to my ankle doctor to find out the results of my ankle MRI. It turns out that yes my ankle has healed up nicely but it has left two pockets of fluid in my ankle which is why it is still stiff, sore and swollen. The answer for this is to try to stick a nice big needle full of cortisone in one of them to see if it helps reduce the swelling. (I hate big needles and don't like the fact that doctors always want to stick me with them.) I go back in six weeks to see how it is doing. Maybe she'll stick a needle in the other pocket of fluid. In the mean time, the outer side of my left ankle is a bit sore from the needle. Oh joy. All of this caused by a nanosecond of stupidity where I tried to look over my shoulder while walking at the end of July 2009.

Next week is my big avoidance. I am invoking my inner three year old who is screaming 'no, no, no' with her eyes closed. Next week I am having an ultrasound of my thyroid. Last year I was supposed to have a baseline ultrasound but it found a 'thingy' called recurrence, thyroid tissue, or lymph node. Nothing was supposed to be there. I had a follow up one in July to see if there was any change. It was the same size. It was called a recurrence or tissue. But since it had not changed, it was called more likely tissue and another six month follow up was called for. Which is next week. The problem is it is big enough to see but too small to biopsy. The fact that it was stable and hadn't changed is good meaning that it is probably just tissue.

Now left over thyroid tissue or regrown thyroid tissue isn't necessarily a good thing. I had radioactive iodine treatment to destroy all tissue and have been told that it is very unlikely or even unheard of to have left over tissue. Regrown tissue is bad because it is unsure if it is good (clean) or bad (malignant) tissue. And it can't be biopsied because it is too small. The only other test is a full body radioactive scan that requires dietary changes and other prep and requires isolation afterward.

Another reason I haven't talked much about this is that this would be a recurrence nearly thirty years after the fact. This is difficult because I don't like talking about recurrences and this is an example of why you can never say you are free from cancer after diagnosis. They just can't find anything. But then they did.

So we are just pretending next week isn't happening.

My tennis elbow is sort of healing. I was supposed to have more acupuncture today but its basically a blizzard outside so everything is canceled. PT seems to be helping and I have progressed to little bitty weights.

In the meantime, my back is having its ups and downs. Today I woke up achy and sore and I'm not sure why. But its snowing out and I can't shovel so I'm just going to work from home with my feet up on the coffee table and get caught up on a lot of work.

Otherwise, life goes on. I actually declined some volunteer work this week because I simply don't have time and was starting to be overstressed.

Oh, and I cant shovel snow so I guess my health has one good side effect. I just get to supervise.

Tuesday, January 11, 2011

A breakthrough without out a purpose

DNA Researchers have found that sometimes a shattered chromosome turns the entire cell into cancer. Aside from the fact that this represents the part of biology class I doodled through, they aren't quite sure what this breakthrough means - other than the fact that you can have a clean mammogram one month and the next month have a very aggressive tumor.

Well, in wrapping my non-medical brain around this, I think:

- This reinforces the fact that every cancer is different. Just because you have stage IIA cancer, doesn't mean someone else with the same diagnosis is the same. Every cancer is different. They put it into slots based on body part and characteristics they can identify - spread, tumor size, hormone receptors, agressiveness, etc - but there are a lot of other variations.

- So they have a breakthrough that they don't quite know what it means but I think that it shows how much we have to learn. Is it a research breakthrough? Is this how cancer spreads and mets? And why someone can all of a sudden have a remote recurrence? Does this mean its an opportunity?

- Maybe cancer doesn't spread through cells but through chromosomes in the cells? Maybe we have been wrong for a long time. Face it for thousands of years, man thought the earth revolved around the sun.

Now you can see my extensive lack of scientific and medical knowledge. But if it is considered a breakthrough, I would think it would represent a new way to look at things. But I am just a patient so don't ask me.

Monday, January 10, 2011

Pain - a topic close to my heart (unfortunatley)

Real Age, a wonderful resource, brings us the truth about pain.

Some myths about pain debunked.

Myth #1: Pain is always a sign of an ailment or that some part of your body is hurt or damaged.
Fact: Pain sometimes travels alone.

Myth #2: Medication is the only treatment that can really relieve pain.
Fact: Pain has many enemies.

Myth #3: If OTC medication relieves your pain, it's nothing to worry about.
Fact: Pain can mean business.

Myth #4: Pain is an inevitable part of aging.
Fact: Pain hates to be ignored.

Myth #5: Only a doctor can assess your pain and determine whether it's real.
Fact: Pain is personal.


I can tell you a lot about pain. I know more about my pain than my doctor - I deal with every day. He deals with it for 15 minutes or so every couple of months. Don't ignore you pain. Pain is your body telling you something is wrong. But it doesn't mean that it can only be treated by medication.

My husband had some shoulder pain a few years ago. I told him to talk to his doctor who sent him for Xrays and then PT. He skipped the PT on the grounds that it wouldn't help. A year later he went back for a physical and the doctor sent him for PT again. Now he does not have pain.

Also, I live with the two week rule - if its not better or improving in two weeks with self care, its time to see the doctor.

Pain is an indicator of something wrong. Don't ignore it. This is why they ask you what your pain is on a scale of whatever they use when you go to the doctor.

I think I know too much about pain... But its a part of my life now.

Sunday, January 9, 2011

Time to tone it down

Why does it take a tragedy like what happened yesterday in Arizona to make us realize that there has been too much mudslinging and polarization in the past few years? We need to tone it down. We are all entitled to our own opinions and to talk about them and discuss them and allow others to disagree. We are not entitled to make targets out of others in any manner.

In addition to the shooting in Tucson yesterday which left a politician and others injured and caused 6 deaths including a child, six middle school girls in Nevada are in trouble for targeting teachers on Facebook. One girl posted and five others responded. They were all arrested. These girls have learned behavior from what they have seen take place around them.

What I don't understand is why this is an acceptable behavior. Sarah Palin, before the elections, posted a target list with cross hairs on Facebook that said 'don't retreat, reload'. I don't care about your politics - as I said everyone is entitled to their own opinion - and your opinion of Ms. Palin, but I fail to see how this is an acceptable behavior.

I have always thought the US was a good place to live. We can have an election without it resulting in a political coup, riots, or a revolution. I am trying to live my relatively quiet life with out a lot of stress and distress from the outside - as I have enough of that from my own life. The time is now to tone things down and not focus on what others are doing that you don't like, but what is an acceptable way to live with our differences.

Saturday, January 8, 2011

Ridiculous is the only word

If you were told a bill was going to go up 59%, what would you do? Get rid of it? Yep, I would.

Blue Shield in California wants to raise premiums up to 59% in March for 193,000. Their explanation doesn't even make sense:

"our individual market medical costs are rising rapidly due to higher provider prices, increased utilization, and the fact that healthier people are dropping coverage during a bad economy."

So healthy people can't afford the rates and are dropping coverage so they are only insuring sick people. And their costs are going up. Where's the logic? So only the sickest people will keep the coverage. Healthy people will find insurance elsewhere. This is just another step on a downward spiral.

Insurance has to be for sick and healthy people - DOH! I think they just want to put themselves out of business or expect health care reform to kick in and solve the problem for them. Ridiculous is the word for them.

Friday, January 7, 2011

I am not inspired

I am not inspired this morning to blog. I don't know but my brain keeps jumping around on different topics. I was going to write about the doctor who distorted the autism-vaccination link. Then I was going to write about how I am doing. Then maybe about life with out cancer. But I am not inspired.

My blog is about me and my life with breast cancer. Well that's how it started. It is now about me and my life in the medical world. It is picked up in different places like Opposing Views and Before Its News. I guess they thought I write about interesting things. Or maybe they like my opinions because I have decided I have opinions about lots of things which I get to share here.

So my blog is about life with cancer. Yesterday some actress (who's name I didn't recognize and can't remember) said that she is celebrating five years of being cancer free. But what that means is that they can't find any cancer - not that she is cancer free. You can't go back and take the cancer out of your body. It may still be there so in my opinion she should really say they can't find any cancer. I would love to be cancer free but is that possible?

This is the problem with cancer. There is no cure. Once diagnosed, they do everything possible to remove it from your body but there isn't a guarantee they did. They do their best and that's it but they don't know if it worked. As a cancer patient, you just get doctor appointments for the rest of your life. My average right now for the past four years is some where over 60 annually. I already have a solid dozen scheduled for this year.

I guess I sort of had a rambling topic buried inside me. But now it is time to go feed the cat as he has been waiting (im)patiently on the floor next to me. If I make a move to get out of bed, he will jump to his feet and look at me to follow him to his food dish. I guess this is one of the little mundane activities in life that keep us going on without getting mired down with the trivialities of cancer.

Thursday, January 6, 2011

Acupuncture anyone?

Last night I went to a support group meeting where there was a presenter on acupuncture. I have never been a fan of acupuncture. Its not that I doubt its efficacy. Its just the needles. I can't look at needles while being inserted or while they are in someone's skin. (They turn my stomach.) I hate it during flu season where they always show people on TV getting shots. I have to close my eyes. I am a wimp. That's it.

But at last night's meeting I learned a lot about acupuncture and spent time looking at the walls while people had needles in them. I found that my health insurance will cover it. The acupuncture practice is conveniently located. Perhaps it might help my tennis elbow, and possibly my back pain and some other issues.

Acupuncture has been around for thousands of years so it definitely works. It is only that here in the West we are a little slow about accepting it. I have nothing against it and enjoyed learning more about it.

My next step is to call my insurance company and clarify a few things. First of all the acupuncturist who was there said I would have to pay him and then get reimbursement from my insurance company. But online my insurance company says it must be billed by a registered acupuncturist - does this mean he must bill them or I can request a refund (and how do I request the refund).

I will also talk to my physical therapist this morning and get his opinion. He hasn't been too thrilled about the way my elbow is healing (or not healing - which doesn't surprise me because nothing ever seems to heal up and go away for me).

Then I will see about setting up an appointment either with the guy from last night or with a woman affiliated with the non profit I work for. She might be a little more convenient and I wouldn't mind giving her the business as she is an independent who is supporting herself.

Finally I will come up with a blindfold to wear at the sessions so I don't have to look at the needles at all. Maybe I can over come a personal fear to help my health.

Wednesday, January 5, 2011

If you have got your health, you have everything

What a lovely old saw. How quaint. How ironic - I don't have my health and RealAge agrees! Annually I make an effort to go into my Real Age account and update my health to see how old they think I am. I am old. Currently I am 16.4 years older than my actual age.

According to RealAge this is why I am old:

- Having a history of breast cancer - hello, I did not request this one.
- Living with cancer - see above
- Worrying too much - see above
- Dealing with heartburn - see above and see one about too many meds that hurt my stomach
- Having depression - ahem, see above. If you had cancer twice, you would be depressed too.
- Taking too many meds - that pesky cancer thing again.
- Not knowing your cholesterol levels - I try to remember this but that pesky cancer thing gets in the way at the doctor's office.
- Having oral hygiene concerns - did I ask for bad gums? No. But I do floss
- Being an ex-smoker for under 5 years - time will fix this one but then I'll be older too
- Driving a small vehicle - big cars use more gas and I'm cheap.
- Facing a lot of stress - see that cancer thing again0
- Not eating enough whole grains - I do I thought. Maybe I'll go cheat and change my answers.
- Needing to review your eating habits - Do they know I sneak in candy at work sometimes?
- Eating too much red meat - we are working on this one.
- Not building flexibility - with back pain, its hard to bend.
- Neglecting your muscles - see note about back pain.
- Having a high BMI - if you can't move without pain you get fat. And there is that stress thing from cancer again.
- Not knowing your resting heart rate - well, sorry! I'll ask but see my reply for cholesterol
- Doing only the bare minimum - see my replies about back pain.

So basically its says I am old, fat and lazy as well as stressed and depressed from cancer. And it didn't even get into a second cancer diagnosis, back issues, sprained ankle, multiple surgeries, and all my other medical crap.Maybe I should go back and take out all the cancer related stuff and see what it tells me then. I'll just pretend I have my health.

Overall I think RealAge is a great tool (and they have CatAge and DogAge too). It is a good way to show you what you need to work on to get in better shape. I recommend it to everyone.

I guess my point is that we need to take care of ourselves to feel better and live longer. I'm trying but I'm not always sure I am going in the right direction.

Tuesday, January 4, 2011

How much are your co-pays?

If you ask someone about their health insurance, they will probably tell you about their co-pays as one of the first topics. 'My co-pays went up for seeing a specialist.' 'My prescriptions cost me so much.' 'I hope the new health care co-pays are much lower.'

Face it co-pays are only one component of your insurance. A high co-pay for a doctor visit may cause people to see doctors less frequently - I saw some study on that recently. But if you don't want to pay a high co-pay, insurance companies would be happy to raise your premium instead. You will pay the same overall either way.

Co-pays are higher for seeing specialists in an effort to get people to see their primary care physician first. Co-pays for an emergency room visit are very high - maybe $500 - if you aren't hospitalized. This is because they want you to see your primary care physician during the day time. Also, they want you to stay in network with doctors with whom they have negotiated prices.

Co-pays are high for brand name drugs because insurance companies want people to at least try the generic version of a drug instead of the brand name one.

Insurance companies are working on controlling their costs by making the path of least (and cheapest) resistance to the lower cost medical alternative. They are also trying to motivate the general public into getting into shape and into getting physicals and screening tests in an effort to keep us all healthier.

Now drug companies are trying to beat the co-pay system so people take their more expensive brand name drugs instead of the generics by offering coupons to the public. With a coupon, the patient's co-pay on a brand name prescription is the same as for a generic. And the insurance companies shoulder the additional cost. The patient doesn't see any difference. The drug company gets to sell the brand name drug and its additional profits. And the insurance companies are stuck with the huge cost.

I currently take five daily prescriptions, plus a few others for 'when needed'. Of the five, two are brand name only, no generic available. One of them, if I get it at the local pharmacy, the co-pay is $105 for a month's supply. If I fill the prescription through the mail order pharmacy, it is a more affordable $65 for a three month supply. For the other, the monthly cost is approximately $2000 (really). I don't know what my co-pay will be because I started taking it after I maxed out my insurance for the year. I will be switching to the mail order pharmacy this year.

I am happy to work with the co-pay system. I make sure I stay in network as well. I am trying to keep my costs down too.

Monday, January 3, 2011

Egad, another partnership?

Can it be? Another partnership in the search for a cure, or in this case a significant cancer detection test? It cant be! It will be announced later today but we already know all sorts of things about it because they announced their announcement before it was announced to get more coverage.

Anyway, I think its very interesting on several levels. Researchers at Mass General Hospital developed a prototype for a microchip which can detect single cancer cells in billions of blood cells. Now, Veridex, part of Johnson & Johnson, and Ortho Biotech Oncology R&D will work to make it commercially available. They are used to the regulatory stuff so can help speed it along. MGH and four other Boston research organizations received a $15 million grant from Stand Up 2 Cancer to test it.

So lots of people are working together. Cooperation is key. I am glad to see the results of donations to Stand Up 2 Cancer. They have raised a lot of awareness but I never really knew what they did with all the money they raised so this is good to see. I am glad also to see that companies are working together to get a new product through the FDA regulatory process.

But they estimate 5 years to market. And is only one project focused on blood borne cancers. These are things like leukemia, lymphoma, and multiple myeloma. There are lots of other cancers out there that are not benefited by this. We will continue to be patients waiting (im)patiently for more news on our cancers.

Sunday, January 2, 2011

Is the Broad Institute the new face of medical research?


Once again in Cambridge MA is a new research outpost - the Broad Institute. I live less than 10 miles from it, probably less than 5 miles (if I was energetic enough to measure it on Google maps). I have barely heard of them. Well, actually I had heard their name and didn't know what they did really. I just thought they were another one of those 'think-tank' places that seem to pop up all over the place around here.

But now that I have read this article about them. Could this be the new face of medical research? Collaboration and cooperation under one roof with no egos involved? And looking at the the human genome and many other areas at the same time? In a place set up for scientists and not for the visiting public? They have floor to ceiling walls that can be written on and added to.

I think this is really cool. People working together to unravel diseases, including cancer. Why can't people work together in other ways to solve problems as well?

If this is the new face of medical research, I am happy.

Saturday, January 1, 2011

In 2011, I want

1. A healthy year. For the past four years I have had more than 60 doctor appointments each year. This year I would like to be healthier so I don't have to go as often. I would also like to see a year of good health for all. H1N1 flu under control, cholera in Haiti under control, good health for all.

2. A political year without mudslinging and bashing. Why must politics be negative? There is no reason to say 'they were stupid' when you could say 'I can make it better'. There is no reason for negativity. No on ever did anything wrong, but someone else can improve on it. Its not like anything can be undone.

3. A year of international stability. Bombings, wars, riots, and more. Why waste money on them? Why not spend the money on taking care of the people in your country instead of letting others blow them up?

4. A year of tolerance. Why hatred and fear mongering? Why places like the Westborough Baptist 'Church' which protests at military funerals? Why spewing hatred and polarization? Does it really matter what one's skin color, beliefs, sex, age, creed, origins, or anything else?

I do wish happiness for all. And a cure for cancer too.