Tuesday, December 31, 2013

Holiday gifts!

Christmas is not about gifts. It is supposed to be about the spirit of giving and enjoying the season and all that. However Christmas gifts are given and received and are supposed to be enjoyable. But not always.

There are always the BAD gifts. You know the ones you want to regift them. That really ugly sweater. The electric wine bottle opener. The seventh calendar for the same year. The ham that was the biggest joke at a Yankee swap last weekend.

Or the gift of spending too much time with family members where all those old childhood issues begin to resurface as the time lengthens.

But then there are the nice ones. The things you really wanted and appreciate. Or the fun and unexpected ones.

Or then there are the other gifts - the unappreciated ones like back pain, foot pain, and more. I'll take a pill and a nap.

Monday, December 30, 2013

A day off from blogging

I missed blogging yesterday. I meant to blog but time got away from me. My brother and  his four children (ages 8, 11, 14, and 16) are visiting. This means chaos. The poor cat  had to recover from over affection from children.

They are a lot of fun but some how take a lot of time. Breakfast seemed to last for a few hours as people wandered through and ate and left, came back for seconds, etc. Very different from the quiet mornings with just the two of us.

After my nephew learned how to make lasagna yesterday morning, my sister came over and the volume increased. Then all of us went for a walk in the woods on very icy trails. I thought I would be fine but I was exhausted.

Eventually they all left and went to Boston. I was physically exhausted. My RA feet hurt. My fibromyalgia body hurt. I needed a pain pill and a nap.My husband and I took naps. The cat continued his nap.

Then we went to my parents for a late Christmas dinner. I lasted about another 3 hours before I had to come home and become horizontal and sleep. I lead such an exciting life.

Today, my husband went to work (traitor) and left me home to deal with all the chaos. I have to take the remaining car to the garage for the day so I will be carless. This might even force me to take it easier than yesterday. But I will be at the mercy of family members to retrieve the car at the end of the day.

I can tell you I am physically exhausted still. Crap. This is no fun. But I do get to see everyone.

Saturday, December 28, 2013

Over-Awareness, Focus, Hype and Expectations

The media did a damn good job about making sure we all knew about Angelina Jolie's double mastectomy. She went public, if I recall correctly, to raise awareness about the BRCA gene. I respect this decision and congratulate her on a brave decision to take something very personal and make it public.

In a recent survey, three quarters of us did know about her surgery and decision. Considering that it happened less than a year ago and and was much less significant than a war, earthquake, typhoon, etc 75% is a pretty good number.

I would also like to point out that all those years of breast cancer awareness and pinkification have allowed this to become a major news topic and not get buried under the carpet or something. However the information stops at awareness.

Only 10% of those asked in the survey knew about Angelina's BRCA diagnosis and why she had the mastectomy. I think I am okay with this. If you are not embedded in the breast cancer world you can't be expected to know chapter and verse about the genetic causes of breast cancer.

For example, I know there is some family genetic trait that leads to Huntington's disease and don't really feel I need to know more about it because it does not affect me directly. If it did, I would be up on it and have read all the research.

I think we have reached a level of breast cancer awareness that is overdone. But I do not think we need to expect that all American's know the great details of a breast cancer diagnosis and all its risk factors. There are many other diseases and ailments that deserve more awareness and shouldn't be hidden behind a pink curtain of over-hype and over-awareness.

I do think Americans need to embrace overall awareness of a healthy lifestyle and not focus on a few diseases at a time - the ones that are closest to them and causing them the most problems.

Friday, December 27, 2013

How I spent my evening or a day in the life of the eternal patient

This is truly the life of a long term medical patient. I spent last evening watching TV with my husband and making lists of questions to ask my doctors in upcoming appointments. I have had the luxury of the past few months with out a lot of doctor appointments. Now I have a big clump of them coming up over the next six weeks or so.

I know I have my rheumatologist and then my endocrinologist and then my back pain doctor. These visits require planning and lists on my part. I need to think about what I want to ask them and decide if I want to do any more research before they see them. Finally I want to think back to the last time I saw them and decide if I have follow up questions from those.

This isn't as easy as you may think. I have a first draft of my questions so far. My next step is to look at my calendar and see when the actual appointments are. Those are the only three appointments I can remember and I am sure there are more.

My most important goal is to put the lists some place where I will not lose them.... Sounds pretty easy doesn't it? I believe at my last round of doctor appointments, I lost the damn list. I frequently lose the grocery list as well.

So in my future may be another evening making my medical lists. Damn.

Thursday, December 26, 2013

The neighborhood you live in and all the little block parties

Think about this for a minute with me. The neighborhood you live in  has a big influence on your life style.

If you live in a city, you walk many places, carry  things home or sometimes take cabs or public transportation. There may be some not so nice areas near by that limit your walking around - unsafe or unlit at night. If there are bad influences in the neighborhood - gangs etc - you may be stressed and trapped inside your residence.

If you live in a suburb you might have a good combination of places to walk and get exercise but you probably hop in your car to do shopping. So while you may get some exercise you probably spend more time in your car in a sedentary life style.

If you live in a more rural are there are probably even more opportunities for exercise, gardening, fresh air but the amount of time spent in your car getting to places may drastically increase. You may have less stress from fear of crime but more time stressed in traffic.

There is a give and take on everything in every neighborhood. You can visualize these with me.

A couple of years ago I saw Dr. Susan Love talk about breast cancer treatment and new research. She said there was more and more interest in learning more about the environment around a tumor. Why did those cells become cancerous? What is going on in that area of a patient's breast which allowed the cancer cells to take over and form a tumor? Is it a protein issue, an amino acid, or one of the other many little thingies that make up a human body?

Going a step further, now medical research is looking at the human body is a microbiome made up of a bunch of co-existing ecosystems. There is a Human Microbiome Project which is looking at all the block parties being held in your body every minute of every day. I find this immensely fascinating and hope that you will take the time to go through the slides in this article: Your Microbiome and you: What Clinicians Need to Know. (If you can't read it but want to, leave me a comment and I'll figure out a way to send you a copy or the text.)

If you do develop an issue in, say your digestive system, what is going on in that system that allowed the issue to begin? Stress, outside influences, etc?

I find  this a very interesting way of looking at issues in the human body and what allows them to go bad. A whole new concept that involves a lot of thought.

So think about the neighborhood you live in or the ecosystems and their block parties going on in your body.

Wednesday, December 25, 2013

Happy Holidays

Today is Christmas and a celebration among Christians of both a religious day for some and a holiday celebrated by the spirit of giving and sharing by all. I hope you all spend a day sharing the things you enjoy with your friends and family.


Tuesday, December 24, 2013

A newsflash: Your behavior can impact the likelihood of developing cancer.

How astounding! I never would have thought. Ha ha.
This video is actually from 2009 but it still applies today. What we did 30, 40 or 50 years ago could cause cancers to show up in our bodies today. Or more precisely, may have given us a greater risk of developing cancer now. 

A much newer article talks about how young women in college may not realize that their behaviors in college, smoking, drinking, lack of sleep, little exercise, could increase their risk of developing breast cancer. (Let me note that this article is one of those press releases for some medical thingymabob so its not like I read it in the Lancet. But a little common sense allows us to realize that they do make a valid point - that thousands of others have made previously but its the handiest resource I have.)

So what is our takeaway from all of this? From the point of view of someone who was diagnosed with cancer at age 19, you  have two choices:
  1. You can live under a rock and not have fun, eat healthy, exercise, blah, blah, blah. Basically you end up with a boring life with no adventures.
  2. You can take that advice and make promises to yourself to not play in traffic but to live a healthy life and have a hell of a lot of fun while you are at it. 
I went for plan #2 but I did get cancer again. But damn I have had a good life.

We do need to remember while something was cool for a while, sooner or later its going to catch up to us. So we need to remember the advice that what we did in the past, will show up in our bodies later on.

Monday, December 23, 2013

LAME advice from an oncologist on breast cancer

I believe this article was originally an announcement of a new doctor at a teaching hospital in Houston. But was later retitled "Oncologist advises what to do when after breast cancer diagnosis"

It is very LAME advice. I actually do not consider it advice, may be on a very basic level.

“My advice for any woman who suspects she may have cancer is that she ought not delay seeking treatment, even though it can be very scary and anxiety-producing,” she said. “My advice for newly-diagnosed patients is to bring one other person to your visit. It is very helpful to have extra eyes and ears to help you remember what is discussed. A breast cancer diagnosis is often urgent, but not emergent. That means that you can obtain a second opinion if you feel like you need one. If something is not clear, it is OK to ask.”

Let me add, she is 40 and obviously never had breast cancer. She should not be in the advice giving department at this level. And what the hell does 'emergent' mean to a breast cancer patient anyway? Is it going to emerge from her skin if she takes too long?

I'm sorry. I have read lots of good advice from all types of doctors and this just is not in that category.

Sunday, December 22, 2013

Looking for holiday spirit

Its the holiday time of year. Holidays are fun. They are supposed to be enjoyable. You are supposed to anticipate them. I am not sure I have much holiday spirit this year. It seems to be missing

Now I am not the religious type so telling me its about the birth of our savior will not too much for me. But I can appreciate the significance for others.

You can tell me its about Santa - I stopped believing the year I got up to go to the bathroom in the middle of the night and saw my parents putting gifts under the tree. Santa also had suspiciously familiar handwriting.

You can tell me its about gifts. I am at the age where the last thing I need is more stuff. I mean there are things I might secretly covet, light a big, counter top stand mixture, but I really do not have room for one and wouldn't use it often enough to really need one.

There are other things I want - like to lose that pesky 30 lbs or be healthy again. If you can figure a way to give me both of those and find a cure for cancer, I would be most appreciative. And don't forget world peace while you are at it.

Don't get me wrong on gifts, I will give and get some. For my family I have long been on the road of edible, home made items. None of them complain about that either.

My husband and I have stockings hung (including one for the cat so he doesn't feel left out - it does have two cans of cat food in it which he may or may not eat depending on his mood) that will fill up mysteriously. We will also give each other a few gifts but we don't over do it.

My brother will show up a few days after Christmas and we will have a second Christmas with gifts for my nieces and nephews. That will be a big chaotic meal and may even include a Festivus pole - but we haven't gotten very far in the planning.

Yesterday we were the recipients of a fair amount of holiday spirit. A good friend has an annual holiday party with a Yankee Swap which includes an astonishing amount of alcohol and sports gear. We ended up with a twelve pack and a bottle of wine and a non-winning scratch ticket. But we also had fun and had lots of Christmas cheer.

On Wednesday we will have a fancy Christmas dinner with my parents, aunt, uncle, sister, and brother in law. We will eat too much. There will be some alcohol consumed. We will toast to the holidays and missing family members. We may even attempt a Skype session with out of towners.

But we will not really exchange gifts. Because holiday spirit isn't really about commercialism to me. I feel sorry for the people who are running around today because they feel obliged to find something to purchase for great aunt Bertha who they haven't seen or heard from since last Christmas. A big fat credit card bill is not an important part of holiday spirit.

What I need to do in the meantime, is figure out when I can get to the grocery store to buy the necessary food to make a fancy meal for us and how to fit all of us at the dining room table. Somewhere there will be some holiday spirit, I am sure.

Saturday, December 21, 2013

The polar bear is not the remarkable part of the story



This young woman was returning from a Halloween party in Churchill, Manitoba and was attacked by a polar bear. She survived due to the efforts of her friends, a neighbor who came out and hit the bear with a shovel and due to the medical flight that took her to the major medical center to be saved.

While this woman is very fortunate to survive. She will be okay in the long term but has to pay of $10,000 for the cost of transport to the medical center for treatment. I would have thought Canada's national healthcare system would cover this type of cost. Never would I believe that the patient would be stuck with this type of cost.

I assumed, wrongly, that Canada's healthcare provided everything, even if it came with a delay. Her friends are helping raise the money to pay for the transportation and time lost at work.

But I hope the bear is okay even though he was hit by a shovel..

Friday, December 20, 2013

A lame blog post

Yes, this is a lame blog post. Sometimes I wonder why people read my blog. I mean sometimes its really about nothing - just like a Seinfeld episode.

I have a cold still/again. I did make it to work yesterday and stayed until 300pm. I will admit that it was the day of our holiday party which makes it one of the best work days of the year. I wanted to stay until 330pm but at 300 I started to feel awful so I headed home with the intent of going to bed immediately.

My commute is usually about 30 minutes. It took over an hour because of holiday mall traffic and some unknown gremlins who slowed down the highway. But then I did finally get in bed and slept for about 2.5 hours. My husband came home and made dinner from left overs. I could taste the food when I covered it in hot sauce. Then I went back to bed.

Today I am going to work even though I am sick because (I promise not breathe on my coworkers):
  1. The garage next to work is going to finish the last car repairs which have dragged on for weeks.
  2. I brought some scarves to work yesterday and some of my coworkers bought them but two wanted to think about it and look at their wardrobes before purchasing.
  3. I really have some work that needs to be done which is the reason we all go to work in the first place.
Then I will come home and take a nap unless a miracle cure happens between now and then. I am supposed to celebrate with a friend this afternoon - she has champagne and I have pate, cornichons, and french bread - but I am too sick for festivities and will have to cancel. Damn.

My other big concerns because getting healthy, honestly I mean getting over my cold, I am not sure about the being healthy part ever again are:
  1. Find my missing mitten
  2. Purchase groceries for Christmas dinner
  3. Find my missing mitten.
  4. Get healthy
  5. Find a cure for cancer.
See, this was a really lame blog post and you get extra points for actually reading it to the end.

Thursday, December 19, 2013

The damn cold

This weekend we had a bit of a cold snap around here. While New England gets its share of cold weather, those of us nearer the coast around Boston usually don't go below 10 degrees or so. Any time a single digit forecast is involved all the cold warnings go up.

Both Saturday and Sunday mornings I had to go to craft shows where I had a table. I was overjoyed to pass by thermometers showing a tropical 9 degrees on Saturday. We later celebrated when the temperature went up to a balmy 14. Sunday was a bit warmer but still frosty. Monday morning was down nearer to zero than I prefer to think - but at least it was not a negative number around here.

Tuesday it was pleasantly warmer so it could dump 8" of snow during the evening commute.

Wednesday morning we woke up to double digit temperatures and lots of snow to dig out - this means my husband shovels and I supervise. He had gone out the previous evening but the plows had since been by with a vengeance - say hello to the giant glacier at the end of the driveway. But it was warmer out.

Unfortunately I developed a cold. The temperatures rose outside and my germs flourished. This was actually a convenient thing. One car got stuck in the driveway so my husband took the other to work. This forced me to stay home and take care of myself - and blow my nose approximately 1000 times, drink about 40 cups of herbal tea, and other wise be miserable.

I took my temperature with our digital thermometer at one point. It measured 95.1 degrees. So I tried the other digital thermometer. It registered about 96. I said hmmm maybe its that cold water I drank. I tried again 15 minutes later and the same readings. Broken thermometers. Now we need new ones.

I have no idea if I had a fever or not but I think I probably did.

Well anyway, today I feel better but will go to work because its the holiday party. I will not go to the gym until I feel better. But I will take things day by day. I hate having a damn cold again.

Wednesday, December 18, 2013

14,000,000

That is the number of cancer cases diagnosed in 2012 worldwide. That is up from 12.7 million in 2008. The number of deaths increased as well from 7.6 million to 8.2 million.

To put it in perspective, 14 million is larger than the population of:
  • Cambodia or Burkina Faso
  • the state of Illinois
  • the entire Los Angeles- Long Beach-Anaheim metropolitan area or the Buenos Aires metropolitan area

That's a lot of people. Unfortunately for many of them, they may not have access to good medical care to get treatment early or any treatment at all.

Tuesday, December 17, 2013

I was never a believer

Okay this is not along the lines of my usual blog posts. But this news crossed my attention span this morning so it is my topic of the day. In my opinion the best antiseptics known to man are:
  1. Alcohol - Scotch and Vodka might disinfect your insides but I mean the kind for the exterior of your body.
  2. Soap and water.
  3. Mother's spit - when they spit on a tissue and clean their child's face and hands.
No where on this list is antibacterial soap. I never believed in them. I have friends who buy them by the caseload and use them to disinfect everything in range. They use antibacterial soaps in their kitchens and bathrooms and use antibacterial wipes on everything else.

I never believed in them. I always thought they were either too harsh or creating mega germs. It was a marketing ploy. "We have the really good soaps, they kill more germs so you must buy them".  I think of the antibacterial wipes as just moving the germs around....

Now the FDA wants the soap manufacturer's to prove it. There are concerns about some of the ingredients affecting humans:

"Further, some data suggest that long-term exposure to certain active ingredients used in antibacterial products -- for example, triclosan (liquid soaps) and triclocarban (bar soaps) -- could pose health risks, such as bacterial resistance or hormonal effects."

About 2,000 individual products contain these products, health officials said.

"Our goal is, if a company is making a claim that something is antibacterial and in this case promoting the concept that consumers who use these products can prevent the spread of germs, then there ought to be data behind that," said Dr. Sandra Kweder, deputy director of the Office of New Drugs in FDA's Center for Drug Evaluation and Research.

"We think that companies ought to have data before they make these claims."

Studies in rats have shown a decrease in thyroid hormones with long-term exposure, she said. Collecting data from humans is "very difficult" because the studies look at a long time period.

Yes if they say something they should be able to prove it. I'm glad I was not a believer.

Monday, December 16, 2013

Then there's that survivor thing

I started this post in March of 2009. I keep a bunch of posts in draft format that because I change my mind, something else catches my attention, or I just forget (most common). They can sit for months or years and then the links I was going to write about go away or I change my mind and decide I am still inspired.

I know I have posted on this before. I do not consider myself a cancer survivor. I am someone living with two cancer diagnoses.  I am in a special little class of people (I like being called special. I like calling myself special. Its better than calling myself a survivor to me.) When asked, I do not say I am a cancer survivor. I say 'I've had cancer twice myself.' And only if I think its their business.

I think survivor was dreamed up by someone who isn't dealing with it. When you survive something you out last it. But if there is no cure, how do you survive it? Eventually something is going to do you in - maybe not cancer, maybe you end up on the Titanic or something... Mental note to self, do not take transatlantic trips during ice berg season.

My take is that I survived a bunch of doctor appointments.I am still surviving because I have an unending list of doctor appointments (which reminds me I need to fix some of them that were changed without my permission). That is my project for today, along with holiday cards, gift wrapping, cleaning, folding laundry, going to the gym and the grocery store. I will survive all that as well.

I used to get more aggravated by the use of the word 'survivor' than I am now. I know some people throw around the word survivor to describe themselves. I think I am okay with that. I think I get more irked by the organizations that start labelling people or the news broadcasters which start saying 'she's a SURVIVOR...' and 'as a SURVIVOR...'

I guess I am saying, people can label themselves but don't label others. Its the same if someone wants to call him/herself a fool, that is fine by me. But don't call someone else a fool - that's rude/mean, etc.

So no, do not call me a survivor. Call me someone special. It sounds better and makes me feel good.

Sunday, December 15, 2013

Crap, crap, crap

I have been a bad person. Once again I didn't break any laws or get arrested or anything. But this weekend is my last two craft shows of the year. I have been knitting like mad to get as many UFOs (Unfinished Objects) completed so I could sell them. I usually try to space out my knitting because of my arthritis so I have less self induced pain. I wasn't very smart this week. I am done knitting for a while.

Yesterday I drove on a gray day an hour away to a craft fair that was a fundraiser for the American Cancer Society. It was in a lovely old building's basement. That had two sets of steep stairs to get in or out.

While I was there I lightened my load by selling a few things. But I did buy a gift basket for a friend. I also entered their raffles and did not win the MP3 player I really wanted, but I did win two food baskets - one Chinese and one Italian - which are full of canned goods. One was so heavy I could barely carry it.

I unpacked the baskets into my bubbe cart, which is my best friend at these events which are on one floor.
And dragged it up the two flights of stairs,  hoping some nice healthy person would show up and help. That hurt.

Then I made a second trip with my giant duffle bag on rollers which contains all my scarves. Much lighter but still not with out its share of pain.

Then I made two more trips of the light weight things.

Today my body hurts. I had an ice pack last night. Today I need more pain pills, arm splint and maybe compression sleeve.

But I have to uncover the car while Walter shovels snow and I can hit the road within an hour to go to another show where I will stand on my feet for six hours.

Crap, crap, crap.

Tomorrow I will sleep late and stay in bed until I feel like getting up.

Saturday, December 14, 2013

Healthline - online help for medical issues

Healthline is an online resource for many health issues, blah, blah, blah. I discovered them when they discovered my blog a few years ago I think, or maybe I signed up with them before. I have no idea now (thanks to chemobrain, fibro fog, etc). Anyway, they have nominated me for one of their best breast cancer  blogs (vote for me - and Ann at But Doctor I Hate Pink here - she's in first place but we want to make sure she wins. I just want votes for my ego. I have 11. She has 2900).

Then they asked me to link to their best breast cancer videos of 2013 which you can see here. They emailed me this request a month or two ago - but you may call me slow.

All along I have been thinking they only have information on breast cancer. Call me slow. They are called Healthline - that includes the word 'health'. Today I received an email asking me to add their Rheumatoid Arthritis information on my blog.

Then I did a little poking around on their site and they have all kinds of information on RA, fibromyalgia and all my other ailments. I think I need to spend a little more time on their site. I'll also have to rearrange my resources page to include my other ailments. Now thats a project.

Friday, December 13, 2013

Always admire the man in the pink tutu



This German gentleman showed support for his wife during breast cancer and is now raising awareness and funds for the Carey Project. He only wears a pink tutu and takes pictures in surprising locations.

You can read more about the Tutu Project here.

And admire some pictures of him in a slide show showing up in unexpected places. They are also selling the prints to raise funds.

Imagine this. His wife gets breast cancer, he shows support and travels the world in his pink tutu, and they end up turning it in to a fund raising program which provides financial support for women with breast cancer, after treatment, and for their family members.  We should all be so generous.

Thursday, December 12, 2013

I really hate it when they change their minds in breast cancer treatment

You know the story. You go through some oh-so-not-fun medical treatment and then you find out afterwards that maybe you didn't really need it. Well they did it again. The announcement was made at the Breast Cancer Symposium in San Antonio yesterday where the focus on less is more. In some ways I am for it.

I am against over treatment. I have experienced some of what could be over-treatment for some women with breast cancer and am just as happy to never repeat it. Some of the recommendations are:

If a woman is diagnosed with breast cancer which has already spread, is surgery to remove the original tumor really necessary? If a woman has metastases to bone, brain, or liver, does removing the tumor really matter in survival? And if a tumor can be shrunk significantly in chemotherapy or radiation, is it really necessary to remove it? Some new studies are showing that the surgery may not be necessary.

But we are trained to want to 'cut out' bad things so this may be a harder decision to make for patients and surgeons.

Another change suggested was women over 65 who have early stage hormone driven breast cancer, skipping radiation may be an option. They can go on an aromatase inhibitor and skip the radiation.

For women with Her2+ breast cancer, an option may be for a 'lighter' version of chemo where they only receive paclitaxel and Herceptin. This would allow them to skip the heavy duty chemo which has been known to cause heart problems in patients, including a few of my friends.

I think I can live with these changes. They are focusing on smaller groups instead of the slash/burn technique that over treats many women.

You can read the whole story here or I am sure you will find it all over the media in the next day or two.


Wednesday, December 11, 2013

Am I that bad off?

These days it seems that people who know me are constantly asking me how I am doing. Hmmm.... Am I that bad off? I know I do have a fair number of ailments but I don't think I am that bad off.

  • I know yesterday I was driving to work and realized that I forgot to bring a wrist brace to work, so I stopped and bought another one. My arm was already hurting on the way in so I knew I need one to get through the day.
  • I did two craft shows this weekend and people were telling me on Sunday and Monday that I looked and sounded tired.
  •  am going to the gym after work tonight and my husband has instantly assumed that he will have to cook dinner. 
  • I don't seem to be expected to do as many things with others as I might have in the past because I might not be up to it.
It has taken me a few years of telling people that I am not always up for things because I need to rest or take it easy and now it seems to have gone too far in the other direction. I almost feel like I am being coddled.

But then I watch people doing things that I used to do and cant any more - downhill skiing and getting airborne off the moguls, cross country skiing through the woods - up and down the hills and dodging trees, winter hiking in the mountains - and think maybe I am not as capable as I used to be. Crap.

Tuesday, December 10, 2013

Justice is served

A few years back, a French company was accused of selling breast implants that were prone to rupture and possibly even filled with toxic contents. Lovely. They were sold in 65 countries world wide and affected 300,000 women. There was even a suspected death from a ruptured implant in 2010.

Usually when we hear about these cases, companies are fined and the executives who made the bad decisions end up in tropical exiles living out their days on the company's funds. Not this time.

The president of the company will spend 4 years in a French prison. He was also fined something like 75,000 Euros. And four other executives also got lesser sentences. And there is still a manslaughter trial pending in the death in 2010.

I can say justice was served in this case.

Monday, December 9, 2013

I'm trying for remission - from RA that is

There really isn't such a thing as remission for solid tumor cancers like I have had. You can get to remission from systemic cancers like lymphoma or leukemia. With solid cancers basically there is just no evidence of disease, or NED.

But I do want to get to remission from Rheumatoid Arthritis. This is supposed to be the goal of RA treatment. It is not very common. The rates range between 5-50%. How optimistic.

True remission is defined as no symptoms, and xrays show the disease is stopped, joints are no longer being damaged. I could live with that. Clinical remission means you feel better but joint damage continues. And near remission means your symptoms have been reduced and your day to day functioning is improved. I could live with either the last two either.

I need to talk to my rheumatologist about this when I see her next - whenever that is. I have no brain. Being healthy is my goal..... Some day.

Sunday, December 8, 2013

Cancer and the common cold, take 852

I have been  known to whine blog about the lack of cure for both the common cold and cancer. I first actually blogged about this in March 2008 (http://carolinemfr.blogspot.com/2008/03/cancer-vs-common-cold.html) if you have been reading along. I mean they both basically suck and neither has a cure.

The common cold is just going to make you miserable for a short while; cancer will make you miserable for a longer period and is more likely to put you in your grave.

But now some rocket scientist medical researchers said "What if we start treating cancer like the common cold?". To my chemo and fibro fogged brain, this sounds like a bit of a stretch. But I can understand the semi logic here. If you have two things you cannot cure, what if you reversed what you were doing and tried something different? Its that old saying if you keep doing something over and over again, what makes you think you will get a different result? Or something like that.

So what they did was reprogram a patient's T cells and put them back in and voila the cancer goes away. You can watch the video here:


Or you can read the whole article here. I find it very cool. Right up there with tumor paint that I had blogged about a few weeks ago.

So maybe cancer research is going in the right direction, now that they turned around.

Saturday, December 7, 2013

$1.50/day

It took several government studies years of research and multiple governments speaking up to figure out it only costs $1.50 per person per day to eat healthier. This means make healthier studies like lower fat content in ground beef, etc.

I have a couple caveats:
  • This is based on 'normal' portion sizes. This means a serving of beef is 4 oz - or the size of a deck of cards.... If you eat normal sizes, you can expect to spend an extra $1.50/day.
  • $1.50 means different things to different people.
    • For a family of five on food stamps this would mean another $7.50 each day which quickly adds up.
    • For someone who stops for a coffee every morning, we can say skip your morning coffee and there is your extra money
I believe in eating healthy. If money is tight or you just want some variety, try a few of these ideas:
  • Frozen vegetables are cheap and don't taste that bad unles they have been used as an ice pack for too many injuries.
  • Substitute beans for meat in meals and get some lean protein. How does this work? At the family taco night substitute beans for meat or even use refried beans.
  • Buy in bulk or when lean meat is on sale and use your freezer. Last week chicken was on sale for $.88/lb. I put it in the freezer and now it is defrosted and will be tonight's dinner.
And a few shopping tips for saving money:
  • Shop early in the day and check the meat section and home made bread section first for expiring items which have been further marked down.
  • Store brands, store brands, store brands.
  • Fresh produce in season is cheapest.
Now if I haven't bored you and you are wondering how does this relate to breast cancer or any cancer, I'll just say that if you eat healthy you can reduce your risk of getting cancer. I mean I did and look at me, I haven't been diagnosed with cancer in 6.5 years.

Friday, December 6, 2013

Welcome to my life outside of cancerland

I do have a life outside of cancerland and being a patient. Actually I do lots of things but one of them is a direct result of having breast cancer. I knit and crochet. It helps pass the time between doctor appointments or waiting for test results.

Back in the fall of 2007, I must have been very whiny because a friend told me I needed a hobby. I started crocheting again. Then knitting. Then everyone in my family got a scarf, maybe even a bad one.Then I started giving them to my friends. Then I amassed a huge pile of scarves.

Somewhere in there a nice woman named, Lorna Miser, contacted me through my blog and wanted to quote me in her upcoming knitting book. She sent me some very nice yarn as a thank you. It's really nice yarn!

This week her book Knit Pink for Comfort, Gratitude, and Charity, showed up, with me quoted on page 43. Maybe my next hobby should be photography.

Last year I went out on a limb and tried having a table at a couple of craft shows. I did okay. I tried a couple more this year.

Now I am signed up for four more craft shows in the next 9 days. call me suicidal if you want. But please come visit me and buy scarves.

Then when I am done with my scarves I can finish the blanket for our bed that I started in July.

Thanks

Thursday, December 5, 2013

Cancer and neighbors

When I was diagnosed with breast cancer I did not go out an tell my neighbors. I live in New England where people have more of a tendency to keep to themselves. I figured it wasn't really their business. We had only lived in the neighborhood for a couple of years and most of the neighbors were new.  Also, I really did not want a non-stop supply of casseroles that might be common in other parts of the country.

We live on a street with five houses on it. When we moved in, two of the houses were under construction and empty, an older man lived in the house across the street who stayed home by himself mostly but would come out to talk to the mail man. The house on the end was a couple dealing with a new baby themselves so we never saw them or got to know them.

Once the house next door was built, our new neighbor did figure it out. She asked me how I was doing, really. I was in chemo and was wandering around the garden feeling like crap and had that lovely pallor. I later found out her uncle had some kind of cancer so perhaps my look was familiar.

I would see my neighbor from across the street looking for a parking space in the hospital parking garage. I mentioned it to him once and we would compare misadventures in the new cancer center. He would tell me about hospitalizations and infusions gone bad and all sorts of things. He lived by himself and never asked for help.

The other newer house, the husband would talk to the older neighbor I saw at the hospital and we would stand outside and get caught up on the latest neighborhood news. His wife was often at work and not involved with the conversations. Then one day she saw me outside and came running up and asked if I was okay and was in remission. I could tell she was concerned and had clearly just found out I had cancer.

But I never told them all my stories. If I knew them better and they became friends I might tell them more but I am okay with it for now.

PS We do not have any snow yet. That's from a few years ago and I thought it would add some holiday spirit which I seem to be lacking this year.

Wednesday, December 4, 2013

The patient hand off

How many times have you been the patient and been handed off from one shift to the next? And  how often does that happen in a slightly overheard conversation between one nurse and the next or one doctor to the next? There never seems to be a formal system of it and it always seems to be rushed. It is a key place where misunderstandings over a patient's care can occur which result in medical errors.

I have learned things about my care from hearing the nurse tell the next nurse that my gall bladder surgery did result in some fairly significant internal bruising during the surgery. The nurse had previously told me that it wasn't that bad and should clear up in a day or two. I also learned that during my knee surgery I had become agitated during the surgery for an unknown reason and should be watched in case I was having a problem with the anesthesia. During a hospitalization I learned that I was doing well but my pain levels were running a little high (I already could tell them that).

Little rushed conversations in the corner or on the side of a busy hallway while updating a patient's file are not in the best interest of the patient. Especially if the nurse tells the next nurse about several patients without time for note taking - can  you say confusion?

Children's Hospital in Boston has come up with a team approach where the full team participates. This has cut medical errors in half. Maybe I should be a kid again and  go there for my next procedure? Or I hope that other hospitals follow suit.

Tuesday, December 3, 2013

Cholesterol and breast cancer

All these new studies, or at least one which was noticed by the media who are in the process of over-hyping it, tell us that cholesterol 'fuels' breast cancer. Well, woop-de-doo I say. This is one of those things that I figure I can ignore.

My doctors have said my good cholesterol was nice and high and my bad cholesterol was nice and low with a total number that was just about right. But now they say my cholesterol could have helped cause my breast cancer.

I am confused. For decades we are told low bad cholesterol for heart health, blah, blah, blah. Now its fueling breast cancer? What are we supposed to do, give up eating? Or is this going to be one of those things where next week they tell us it doesn't fuel breast cancer?

Wine is good or bad. Coffee is good or bad. Chocolate is good or bad. And the list goes on.

Argh!

Monday, December 2, 2013

A Day Off!

Today is my first day off in months. Seriously. You may be thinking but she only works part time, she has lots of time off. My life is full of lots of obligations.
  • Doctors appointments - none this week.
  • Volunteer work
  • Craft fairs - almost caught up.
  • A huge DOD peer review project which ended just before the holidays (and I was very honored to participate but it took a lot of time).
  • Research - webinars etc for work
  • Planning, shopping, and cooking for Thanksgiving
  • Spending time with family
  • Spending time with friends
  • Cleaning, making beds, and spending time with house guests
  • Not getting overtired

Yesterday was recovery day from Thanksgiving. The houseguests were gone so we had to clean up and do laundry, go to the gym and all the normal things one does. My husband also wanted to put out the holiday lights but it was a little rainy. We also have stuff to put away after accomodating five house guests for several nights.

At some point in the afternoon I realized that I had no plans for today. Well almost none. I mean I am meeting a friend for a walk at 1230. I slept until 8am. I wandered around and fed the cat who was mad because he was reduced to eating dried food which he hates.

Then I read the paper looking for that cancer cure in the health section on Mondays as I optimistically do each week, hopped on FB to catch up with my friends, read blogs, think about cyber Monday shopping and then I started on my email.

There was a message from my husband reminding me (eek!) that he is bringing teriyaki chicken wings to work tomorrow for a potluck for 30 people. To be fair he did offer to go to the grocery store for the chicken and whatever else we need. And he did tell me about it weeks ago but evidently we both forgot.

That was a quick change of plans. I could  not find my decades old, much requested recipe for wings. Plan B, I called a friend of mine who also makes good wings for parties. She gave me her recipe (which is a secret - not! Take a jar of low sodium Kikkoman marinade and baste and pour over wings) which forced me to take a shower, get dressed, brush my teeth, and get to the grocery store asap (where I ran into a lady who was shopping in her PJs).
Today I now have lots to do. My friend will be here in five minutes to walk. I have to come up with something for dinner. Then once my husband gets home, there will be a few more things to do - like cook chicken wings, get the crock pot ready for tomorrow). Then there is a little pile of bedding to get put back in bags in the basement and fold five loads laundry that never made it back upstairs so I have to wait until my husband gets home.

So basically today I get to pretend I am a normal person without any health issues and just take care of life. That is very unusual.

Sunday, December 1, 2013

Telling your story

In recent months I have alluded to friends and family with health issues. I haven't provided details as it is not my story to tell. If they wanted me to share their story I feel they would tell me. But as this is my blog and not their friendship circle I doubt that would happen.

You are probably also aware that I don't always tell my medical (mis)adventures until I am ready. I have many reasons for this:

  1. Sometimes minor medical issues become overblown because of my medical history. Its one thing if my doctors say to me 'with your medical history we have to be sure' and send other me off for another series of pokings and prodings. But its another thing if I have friends and family call me up unendingly over little things that are nothings. It drives me crazy.
  2. Sometimes minor medical issues become much bigger ones (as a result of the additional pokings and prodings) that I need time to digest, figure out a treatment plan, and how we are going to handle it.
  3. If I wrote about every twinge and pain, I would have everyone bored to death in hours. This is why my husband accuses me of whininess now and then
I realize there are normal healthier people than share their medical adventures much more openly. That is their choice.

Privacy is something that can't be restored once broken. You need to allow people the option for privacy.

Saturday, November 30, 2013

Day Two of Pajama Girl

More pajamas for me. To continue yesterday's sagas, I finally got out of my pajamas in time to take my younger niece and nephew shopping with my husband. The kids were happy with books, ice cream, and a music store where a weird piccolo was purchased. We came home in time to watch a movie with popcorn. Then we proceeded back to my parents to eat left overs. After which I took my older niece shoe shopping for her birthday.

I was tired by the time we came home so it was pajama time again. Today I am still in my pjs at 11 am and promise to take a shower shortly before going to an early dinner.

The reason for my pajama girl discussions is the contrast in my health from a year ago. Last year I was just diagnosed with RA and fibro and had much more energy and capacity for doing things with others.

What a change a year makes. I need more naps. I need more rest. I have less energy. I just get damn tired too often. Crap.

Today I will go to the early dinner and come home for PJ time again. Tomorrow life might begin to return to normal as I will stay home except for a quick trip to the gym.

Friday, November 29, 2013

Today you can call me 'Pajama Girl'

I have been very busy recently. I worked Monday and Tuesday. I made pies and did all sorts of things Wednesday. My brother arrived Wednesday evening with chaos (four nieces and nephews) and we had spaghetti and meatballs and salad for dinner. Yesterday morning we cooked more - my older nephew helped make a cabbage dish and my younger nephew helped make the scalloped potatoes. We went for a walk. I was exhausted by 2pm but went and picked up my aunt and uncle and we went to my parents house for a big dinner where we all ate too much. By 7pm or so, I was done for the day so my husband brought me home.

I went to bed early so I could recover and get to today's planned activities. These consist of buying a birthday present for my younger nephew who hit the ripe old age of 9 recently and recovering from the past two days. He found what he wanted on Amazon so it is now en route to him and I got to stay in my pajamas. Everyone else has taken a shower and gotten dressed.

My brother started calling me 'pajama girl' in that loving and sarcastic sibling tone - evidently I wasn't setting a good example for the kids. I will take a shower shortly but the cat is stressed because too many children have been interrupting his naps and right now he is snuggled up against me to recover. When I over do things (like I have for the past few days) I need time to recover from the exhaustion.

I have probably less than an hour and then I will take my younger niece and nephew to the used bookstore and a little local shopping. This will be local shopping, where you park the car in the center of town and walk around to the different stores - like in the old days. No malls will be involved.

Then we will head over to my parents house for some more food - left overs. Because we didn't eat enough yesterday and there are lots of left overs. After that I will come home and put on pajamas again.

I did mean to go to the gym today but I don't think that is happening. Maybe tomorrow. Or maybe I'll be pajama girl again.

Thursday, November 28, 2013

About them bones...

Cancer has a way of doing things to your bones. Never mind the evil metastases that can be rather nasty. But the cancer treatment can do a number on your bone. Some treatments cause bone loss. While our immune systems are compromised it is harder for the body to grow healthy bones. The result is osteoporosis which makes one more susceptible to broken bones.

After cancer, we learn to appreciate life a little more. So on this Thanksgiving Day, take a moment to say thanks for still being here after cancer and take that wish bone and wish for a healthier life without cancer.

Wednesday, November 27, 2013

You would think I had this under control

I never remember to take my pills. There I said it. Its a combination of being a space shot and well... being a space shot. I remember my morning thyroid pill 99.9% of the time. Its been 32 years so you think I had that one down pat. Then the rest of my day gets complicated.

I have a whole pile of pills that I take at dinner time. 98% of the time that happens as well.

But the rest of them, forget it.

Here are the complicated ones:
  • I am supposed to split up my calcium pills and take one in the morning and one in the evening in the 'pile'. That never happens. I have to take it four hours after my thyroid pill which puts it in the middle of the day. I NEVER remember that one.
  • I am supposed to take a different a Xantac in the morning. Ditto with four hours after my thyroid pill, ditto with NEVER remembering.
  • I am supposed to take pain pills as I need them every four hours or so through the day. Then I am supposed to take one last one just before bed. I am at about 40% on that one.
  • I am supposed to take Lyrica twice a day for my fibromyalgia. I am running about 30% on that one. I really have to figure it out. I can take it an hour after I take my thyroid pill which helps because I usually am still at home. But yesterday I remembered on the way to work, put a note on my phone so I took it at 3 pm when I got home from work. I said I would take the second one just before bed. That didn't happen. I dropped it into the cat's water glass on the bedside table and it was floating there this morning.... (Yes the cat has a water glass because otherwise he would drink out of my water glass.)
I have on of those daily pill boxes and use it. What I think I need is a separate pill box to split up the ones I need to take throughout the day. Damn. I have to do something. I do not have it under control and am not willing to lie to my doctors about it. They can get very pushy which they should.

Tuesday, November 26, 2013

Helping your cause or not

Yesterday at work a co-worker said she was trying to find a pink tool set for her home repair inept daughter who was moving into her own place. She said that Komen (for the Cure) had them. I said to her that she should not buy from Komen as their money does not go to cancer research but to pinkification and events. She hadn't realized this and was glad I told her.

She is someone who has never had breast cancer (yes I really do know people who have never had cancer) and was really out of the whole cancer conversation. Her husband had prostate cancer but that doesn't have a pinkified bandwagon to hop on. But I digress. She will find the pink tool set from another source and not give money to Komen.

[And why does Komen sell pink tool kits any way? I mean how is that helping breast cancer awareness and research? Really?]

You may not know this about me but I have become addicted to knitting and crocheting. I am a member of SABLE (Stash Acquired Beyond Life Expectancy). I have realized the depths of my addiction and have started selling my wares at local craft shows. I try to sell at craft shows that are fundraisers for local schools or other organizations. I have done three shows this year - two benefiting schools and one a temple.

I am now signed up for three more shows - two to benefit schools and one which is a fundraiser for a team in the Relay for Life in Smithfield, RI. I had two shows to pick from that day - one for a school and one for the ACS. It was a no brainer for me. I went with the one for the ACS. I can't always afford to donate to as many causes as I have in the past these days but this way I am donating to a cause that really means a lot to me.

I find this to be a really creative way to raise funds for a worthy cause.

Monday, November 25, 2013

Blood tests for breast cancer?

You mean maybe we could skip the annual mammogram and just have another blood test? That would be too cool. Now I couldn't read the article without subscribing to another magazine but suffice to say the abstract is promising enough:

"A new blood test may be able to detect the early stages of breast cancer, researchers say. Scheduled to begin vigorous clinical testing in early 2014, the test successfully identified the presence of breast cancer cells from serum biomarkers in preliminary testing, a huge step forward that could make breast cancer testing more widespread and more regularly detected early..."

Wouldn't it be nice if a test could be replaced by a blood test? How much money would be saved? How much time could be saved? Mammograms and MRIs only after an older age - 55? - or for high risk groups? This is something I would call progress - of the good kind.

Sunday, November 24, 2013

Another Article I Obviously Missed

How to Fight Off Cancer:
  1. Eat right
  2. Exercise
  3. Manage Stress
  4. Get Enough Sleep
Can I just say better late than never?

Or, can I have a do-over?

Or, I'll get right on that?

Saturday, November 23, 2013

Prescription Dollars Wasted By 913 Doctors

This kind of thing really pisses ticks me off. Everyone in the country is trying to do their part to help reduce medical spending. Most people really do try. Patients get generics, are taking better care of themselves, doctors think about costs when suggesting treatments, hospitals are trying to manage their costs in many ways, insurance companies are managing and lowering their overhead costs.

Then we have a bunch of 913 loser doctors who prescribed name brand drugs without allowing for substitution by generic. Now I realize that some people need the name brand drugs  because the generics are not the same for them. But some investigative journalism was done and found out about these losers.

A small portion of doctors nationwide is costing American taxpayers big time because of their tendency to prescribe name-brand medications through Medicare even when generics are available, according to an analysis by ProPublica, a nonprofit organization producing "investigative journalism in the public interest."

The biggest offenders are 913 practitioners who, thanks to disproportionately prescribing name-brand drugs, cost taxpayers an extra $300 million in 2011, say ProPublica's Charles Ornstein, Tracy Weber and Jennifer LaFleur. Each of these doctors wrote at least 5,000 prescriptions that year, according to the report.

$300 million a year is not chump change. And these doctors had ties to pharmaceutical manufacturers. So if you multiply 913 doctors times 5000 prescriptions (pause while I find a calculator because my brain is not that smart 5*3=15, carry the 1, 5*1 is 5 plus 1 equals 6, 5*9=45) equals 4,565,000 prescriptions each year. 

And think of that year after year. $300 million and 4.5 million prescriptions times kickbacks which send them on fancy vacations and secret accounts in the Caymans at the expense of the American taxpayer through Medicare. Now you understand while I call them losers.

I am glad about this piece of investigative reporting. I hope those losers now get fined, lose their medical licenses and have to start paying back. I also hope Medicare fixes the loophole.

Friday, November 22, 2013

Best cancer blogs nominations

Best health blogs 2013
Healthline
This year Healthline has nominated my blog as one of the best health blogs of 2013. While I am very honored to be nominated again, I never quite understand why they include me.

Now they are running a contest for the best blog. The winner gets $1000, second place gets $100, and third place gets $50. You can vote from any US based Facebook or Twitter account once every 24 hours.

While any bit of money is welcomed, I know there are others who are not as well off. If I had my choice I would say to vote for Ann over at Breast Cancer? But Doctor I Hate Pink! and vote for her blog.

The reasons are this: She was diagnosed two years after me, had a a recurrence and now is living the stage IV lifestyle which includes missing one salary (hers) which I presume means money is somewhat tighter in her household than mine. Stage IV means you live scan to scan, treatment to treatment so its not a lot of fun either. She won last year and I hope she won last year and I hope she wins again this year.

So please think of me, but vote for Ann

Thursday, November 21, 2013

I made it

The past six weeks of my life have been indescribably stressful and fatiguing for numerous reasons. All I needed to do was get to November 21 (which is today you will note) and I can relax and life will go back to its normal pace. The reasons for my stress were:
  1. Both my parents had health issues - the exact issues are their stories to tell, not mine but I will say they both have a long road ahead of them but they should be fine in the end.
  2. I had three craft fairs recently which took entire days out of my weekends and made me want to crawl back into bed for a week after each.
  3. I have had a few minor medical issues to deal with but they are dealt wit. Its just the time that it took to deal with them.
  4. I volunteered for a six week research project which helps with breast cancer research as part of the DOD research programs. It was enlightening, optimistic, and enjoyable. But it was a lot of work and ended up with the past three days spent in a hotel outside Dulles airport in meetings discussing things. 
  5. I can't remember the rest but there was a lot going on my life.
Sadly I must say that an old friend of mine was strangled by her husband this week and her two babies were killed as well by her husband who then took his own life. It was a very sad occurrence that requires a certain amount of mourning to cope.

Now that I have a little more time in my life, I can take some needed time to reflect and reassess after such violence hits so close to home.

I made it through a very hectic time and can take some time to mourn before the holiday next week.

Wednesday, November 20, 2013

Cancer staging - take two

When I was diagnosed with breast cancer in 2007, I was overly concerned about staging. We all were. 'What stage were you? How long has it been?" we carefully asked each other and compared notes. We introduced ourselves to each other and whispered "what stage are you?" and "how do you feel?".

[There is more on my staging here. If you want a basic overview of how they get to staging read this or go to cancer.org and look up your type of cancer.]

Now I will talk about reading between the lines in my non medical point of view. I never went to medical school but like any cancer patient I feel like I am medically educated  now.

Things I have learned:
  • Your initial staging can be wrong. When you have surgery, they try to give you a quick staging that is later validated by the pathology lab to confirm it. My surgeon refused to do this because he said they have a 50% error rate, so I had to wait an agonizing four days to find out what I really was. Since then I have heard numerous stories from patients being told that 'first my doctor said this but then the lab report came back and he changed to that'. I think I am glad I waited up front to get the real story.
  • Your initial staging can be wrong months later. I know of two stories months out the doctors changed their staging. One was a local newscaster who was diagnosed with breast cancer at stage III but later was told she was only stage II. Would this have changed, and eased, her treatment? I don't know but it still would be upsetting.
  • No matter what stage you are, there is still life after cancer. Just recently I met a woman whose children running a fundraiser for a neighbor with pancreatic cancer. She was so upset. She had no idea how I knew anything but I talked to her for a few minutes and she seemed to calmed down. Stage IV is not a death sentence. I have a friend who is over 30 years out from a Stage IV ovarian cancer diagnosis. Another friend recently died after 17 years at Stage IV breast cancer. A third friend is 6 years out from a stage IV diagnosis and is not even receiving treatment because she has no symptoms. If have more stories if you want to ask...
  • Some cancers come with a stage IV diagnosis automatically, lymphoma for example, because they are everywhere. But that doesn't mean they are a death sentence any time soon.
  • All cancers are not a death sentence. I can tell you stories and introduce you to people who are decades out from diagnosis and doing just fine thank you.
Now six  years out, we don't ask other 'what stage are you?'. We ask each other 'do you want to meet for coffee?'. We talk about life, shopping, holidays, work, stupid people, bad drivers, the latest news, the idiots in Washington, planning fun events, issues with relatives.... You know the things normal people talk about.

Every so often we talk about our next scans or doctor appointments but they do not dominate our lives. We do might flinch when we hear about stage IV cancer diagnosis because we know more about what it really means. We need the whole story behind it before we can discuss it calmly. We know better than to jump to conclusions.

All I can say is cancer takes on new meanings six years out.

Tuesday, November 19, 2013

I'm still me.

I may not be the same as I was ten years ago, five years ago, or even a year ago but I am still me.

I don't work as much as I used to. I go to the doctor more than any normal person. This year I should end up with just under 50 doctor appointments - which is down from a high of 80 or so a year.

I don't get out and do as much outside as I used to - skiing, skating, hiking, biking, roller blading and more have gone by the way side.

But I still do the things I like to do that I can. I just know they can take a lot out of me.

I feel sometimes I am the recipient of blame or finger pointing for all my health issues. Its not intentional but I know I have to control what I do so I spend fewer hours in pain recovering from what were previously normal activities. I am getting better at saying no to requests for things. I am learning to stand my ground and walk away from opportunities that would overtire me.

My husband makes dinner probably twice a week now. I also try to make something each week which can be eaten for a few nights. Going out to dinner can take more energy than I want to use.

But I'm still me. I just don't move as fast and need lots of naps.

Monday, November 18, 2013

Oopsie, they made a boo boo

Last week, it was announced by those that be in power that many millions more Americans need to take statins to reduce their heart attach risk. I suspected that this might be an evil ploy by pharmaceutical companies to earn a few bucks....

Well now it turns out that made a big fat boo boo and the calculator/algorithm that was proposed, doesn't work. They did things like using data from the 1990s when more Americans smoked and drank and all sorts of other basic things. This is an example of why more research is often need to confirm things.

So there isn't a  magic pill in statins for millions. Just like there isn't a magic pill for the rest of us.

And don't believe everything you read...

Sunday, November 17, 2013

Off I go

Today is the start of four days of a crazy schedule for me. Its 545 am on a Sunday and I am up and have to leave to a craft show in 1.5 hours. This means I will be carrying things, standing, and being perky all day. I hope to make some money and should be home by 3pm or so. These always exhaust me.

Tomorrow morning I need to get things ready for the cleaning lady (meaning cleaning for the cleaning lady) and leave for the airport around 7am. I am going on a business trip which is full of meetings. I see an airport and a hotel so it doesn't matter where I actually am (which is Dulles). (Note to burglars my husband is not going and he will be backed up by the cat.)

Once I arrive, here is my schedule:
Orientation in the afternoon
Dinner at the hotel
Two hour meeting

Tuesday
Meetings from about 9-5
All meals at the hotel
Group dinner in evening.

Wednesday
Meetings from about 9-2
All meals at the hotel
Rush to airport
430 flight home.

Its actually a very interesting trip and I will share more later. But my concern this year is that my body will not be able to keep up. I get so exhausted so easily. I need so much sleep and rest these days.

But I will grit my teeth and bring lots of pain pills with me.

Saturday, November 16, 2013

Damn, more meds!

And an expensive one at that. My pain doctor put me back on Lyrica. We tried it about four years ago for the nerve pain issues I was having with my back. We decided it didn't really work for me after about 9 months so I went off it. But now that I have been diagnosed with fibromyalgia, my doctor is suggesting I try Lyrica again.

I don't have a problem with it. My fibro pain has been pretty bad. Just sitting still, knitting, watching TV, driving, or whatever, all of a sudden I will get a bone deep pain in my arm that shoots up to about a 9 or so. Then it goes away. So its no like you can treat it specifically. Sometimes I ice it afterwards if there is any residual achiness. I get other pains as well.

These are all signs that my fibro is active. The decision at my diagnosis was to treat my RA first and see if we can get it under control and then focus on my fibro. So now we are at that point.

I went and picked up my prescription yesterday and took my first dose - twice a day. That's where the problems started. First I have to talk to my insurance and see if I can get it cheaper - $70/month right now!!!

Next I have to figure out when I can take it in the morning. The Lyrica bottle says I can take it with any other medications as it doesn't interact. The other pill I take in the morning, Levothyroxine or synthroid, clearly states take one hour before or four hours after eating. Do not take other medications or vitamins for four hours. So now I have to call the pharmacist and get a real answer.

Finally I have to talk to my meds therapist about interactions with my other medications. This is what I have to do after most new prescriptions

Adding one more medication is not easy. I am on a lot of different things that cause different interactions. Some pain medications and some anti depressants work the same way or in different ways that can cause problems.

This is complicated..... Crap.

Friday, November 15, 2013

Gimme the paint!

This may look like a slightly disgusting picture but its a picture of a tumor as it would be inside one's body with and without the new tumor paint.
The left shows a tumor image on an MRI. The right shows the bad stuff lit up with the toxin from the Israeli Deathstalker scorpion (I'm not making this up) and shows the bad stuff - the stuff the surgeon wants to cut out. The other colors represent the good stuff.

This works on brain, breast and other tumors. I find this incredibly cool. Now surgeons go in and look at MRI and other imaging and figure out which are the good cells and which contain the cancer cooties. They would guess and use their experience. But if they took a few too many brain cells, the patient may never be the same. This is also why surgeons have problems getting clean margins because they are doing some guess work.

I love this quote:

'"In a matter of 10 years, surgeons will look back and say, 'I can't believe we used to remove (tumors) by using our eyes and our fingers and our thumbs,' " Olson says.'

Read all about it here. I find this very exciting! I want that paint before any more cancer surgeries.

Thursday, November 14, 2013

Coping or not

Sometimes life just gets very complicated, full of ups and downs, stress and more stress. I don't cope as well these days as I used to. In a spurt of optimism this summer, I told my therapist I didn't want to see her monthly but every six weeks instead.

Then every thing around me has gone to hell in a hand basket so to speak. I have some new issues with my ailments so the medical roller coaster keeps on going. I have family members who have new health issues. I volunteered for a huge project which ends next week.

Its peak craft fair season and I have a fair every other weekend. And one car had its check engine light start flashing, the other car - does it need snow tires? What about bills - too many to pay between sequester and shut down pay cuts? And, and, and, and..... Eeeekkkk!

I finally go back to see my therapist tomorrow. I think I have a list of issues to discuss with her - maybe a relatively long list even.

But I am coping. I think. I feel like I have a million overscheduled days in a row now in my life. I think I need a vacation - but that's not happening for a while. Crap.

Wednesday, November 13, 2013

There is no magic pill! Sorry!

I admit I often ask my doctors for a magic wand to make bad things go away. They tell me they cannot provide it no matter how nicely I ask. There is not a magic pill, no matter what the pharmaceutical industry wants to make us think.

In a perfect world, I would like to have a magic pill or magic wand for the following: breast cancer, thyroid cancer, rheumatoid arthritis, degenerating disk disease, and fibromyalgia. None exist. So I am whing.

The use of tamoxifen to help reduce breast cancer occurrence in high risk patients is a smart idea. It is a relatively small portion of the population and something that can't really be affected by diet, exercise or other changeable activities.

But I have a real problem with the new 'brainstorm' to give statins to millions of people who are at a risk of 7% or more of having a heart attack in the next ten years. Let me just say that somewhere around half the panel of doctors who decided this were connected with the pharmaceutical industry - they didn't vote so that is supposed to make it okay. (I would assume they did make their opinions known in pre-vote discussions.)

Doctors are now going to be told to use a new algorithm: "The equation considers age, sex, total and HDL cholesterol, systolic blood pressure, blood pressure treatment, diabetes, and smoking." HDL cholesterol is impacted by smoking, weight and exercise or lack of it. Systolic blood pressure can also be impacted by the same and salt and alcohol intake.

So let's see, get off your butt, start moving, eat right, and all that stuff, or take a pill for the rest of your life and make the pharmaceutical industry rich? Hmmm.... I prefer the former option over the latter.

I am sure statins have side effects because everything will have some kind of side effect.

PS And this recommendation will impact 1/3 of Americans. The claim is they are cheap but my guess is that the insurance industry will be on the hook for a large portion of these costs.

Tuesday, November 12, 2013

Delays can cost lives

Back in early Pinktober, Good Morning America had a 'Pink' Day and had one of their staff, Amy Robach, have an on air mastectomy. Now she is told that she has breast cancer and that the mastectomy saved her life. Now that may be a bit overly dramatic but she had skipped her mammogram at age 40.

A family member, who shall remain nameless, was given a pass by their PCP for a colonoscopy at age 51 instead of age 50. At 51, they had a giant malignant polyp and they could not get clear margins, so they had a colectomy to ensure there was no more cancer. What if they had continued to skip their colonsocopies?

A new study found that young women diagnosed with breast cancer who do not have a lot of money face delays in their treatment which could lead to the higher mortality rates experienced by them.

What does this tell us? Delays are not good. It probably is not a good idea to delay testing and treatment when dealing with cancer.

PS Obviously it is not a profound kind of day for me. This was a pretty lame post.

Monday, November 11, 2013

The transfat debacle

The FDA wants to get rid of transfats because they are bad for us Americans and cause all sorts of problems. I don't have a problem with that because they are in things that either I don't eat or can be easily made without them.

I used to use margarine but decided it had too many ingredients. Now I use unsalted butter. It has one ingredient - cream. I don't buy frozen pizza, microwave popcorn, coffee creamer and all sorts of lovely prefab foods including baked goods. It helps things retain their shape and improves shelf life. I prefer things that are fresh with few ingredients.

McDonalds has gotten rid of transfats so you can safely eat their fries. Dunkin Donuts seems to have removed transfats from their donuts. I am sure other chains have done the same.

Skip the frozen pizza - either order it delivered or make your own from scratch or use the premade crust available at the deli. Microwave popcorn - a/k/a chemical popcorn - can easily be replaced by a little brown paper bag that you used to use to bring lunch to school and 1/4 cup of kernels. Fold the bag sealed and put in the microwave for 3-4 minutes. Voila its chemical free. Melt some butter separately if you really want.

My absolute favorite, horrible for me meal that I eat rarely is fried clams and scallops with onion rings and fries - my husband and I split a plate - and we get it at a place which fries everything in lard. Lard doesn't have transfats either.

My gut (haha) tell me that the place that would take the biggest hit if transfats were removed would be the frozen prepared food section of the grocery, the premade baked goods in the grocery, microwave popcorn, and the fancy creamers that go into coffee. Could we live without these? Probably fairly easily.

I am with the FDA on this one.

Sunday, November 10, 2013

When to pull the plug?

The ever so smart 'them' tell us to have the important discussions ahead of time. You know the discussions about life support, casket choices, funeral ceremonies, and all that. Those uncomfortable discussions that should not be avoided.

The young man in this video was taken off life support at his request and died shortly after. You need to watch the video to get the whole story.



I fully support this decision. He made his opinions known prior to his fall. He repeated his wishes twice to the doctors and to his family members.

I am so glad that there was no dispute, no need to call in lawyers and get a judge to sign off. This is the way that these decisions should take place - with no fanfare, no discussion - just the confirmation needed.

Saturday, November 9, 2013

Parity

Parity in health insurance is required. This week Washington announced that Mental Health a/k/a behavioral medicine would be treated the same under Healthcare Reform as physical health issues. That's good but there is still a ways to go for full parity:
  • Dental coverage - why do we have such crappy dental coverage? Its not just your teeth needing cavities or replacements but the state of your mouth and tongue and potential tumors or other health issues.
  • Eye care - why can I only get my eyes checked every two years by a limited number of providers? The doctors want me to get my eyes checked yearly but the insurance company only covers every two years.
  • Oral parity - this is when oral drugs, such as chemotherapy, are covered under the pharmacy benefit but if done as an infusion, which costs a lot more, they are covered under the medical care benefit. A patient could pay $20 for a copay for chemotherapy infusions that costs the insurance company $12,000 but $1000 for their share of an expensive chemotherapy pill.
  • Equal coverage for birth control and impotence issues.
We will not have full, equal coverage until all these are covered.

Friday, November 8, 2013

Addendum to stigmas

As Lesley commented yesterday, the same can be true about chronic problems. People just don't understand. Then they forget you still have a problem or ask why it isn't better. Chronic problems do not go away.

A good example of this is that I have lymphedema in my left arm. I used to go for acupuncture. When I started I had to fill out a big long form with all my health issues on it. We talked about all my ailments and including lymphedema and how there could be no needles on that arm.

The acupuncturist would 'forget' sometimes and go to put a needle in my left arm. The last straw for me was when she said to me 'this hasn't resolved itself yet?'.  Clearly despite her statements that she had learned about lymphedema, she had no clue.

Then I have friends who ask if I want to go on a big hiking trip as in the past - no can do. That part of my life is over. And not by choice. If I can't go hiking it doesn't mean I don't enjoy your company.

I think some people feel that their friend's chronic problems will just go away if they could just wish them away. But life isn't like that. Which is why the diagnosis and treatment was so traumatic.

I mentioned my current knee problems. Well this is a third year of problems with what is formerly known as my 'good' knee. Now I don't have a 'good' knee. I have two knees which I hope won't need replacements for a couple of decades.

If someone has a chronic ailment and can't get around and out and about as  much, they are still there. Don't ignore them. If you can't get together, pick up the damn phone and call them.

Thursday, November 7, 2013

Stigma over health issues

No one deserves any health issue. However I can say there are two types of ailments:
  1. The ones which just happen - whether a cancer diagnosis or a car accident. There is not much you can do to avoid them. You may have increased your risk by smoking or driving without a seatbelt but the stars aligned for you.
  2. The kind of ailment which is preceded with alcohol or other intoxicants and the statement along the lines of  'hey, watch this!'.
The first category there is no blame. Should be no stigma. Nothing. The patient needs to accept that it happened, and learn to cope with the treatment and resulting lifestyle changes. Some of these are harder than other. I mean a broken leg is much less significant than a cancer diagnosis or multiple sclerosis or cystic fibrosis. But there should be no blame on the patient what so ever.

The second group, I call the self inflicted ailments, that may also involve interaction with public safety officials are clearly containing some blame. It is never a good idea to try to duplicate stunt scenes from TV and movies, nor is it ever smart to do anything that has questionable legality or other such ideas. To these patients I would be happy to lay some blame on them for the self inflicted activity which preceded the ailment.

So why is there a stigma attached to so many ailments. Non smokers get lung cancer. Not all smokers get lung cancer. If someone gets lung cancer it does not automatically put them in to the self inflicted group of ailments which is wrong on so many levels. I did nothing to get my large share of medical ailments so no one should blame me.


Wednesday, November 6, 2013

Stress

I have a favorite coffee mug these days. It says "I didn't survive cancer to die of stress".
It is true. I try to avoid stress at all costs these days. Ten years ago I was working downtown with a relatively high pressure job where my boss believed yelling at people and making people cry would motivate them.  I didn't like that, nor did I like the way my commute aligned with my  new husband's - he was home an hour and a half before me. I found a new less stressful job which was shortly followed by a  highly stressful cancer diagnosis.

Since then my health has been less than ideal and I have to live with the constant stress of new medical twists and turns every week (this week is an MRI and potential knee surgery). Stress started having a way of taking over my life as I focused on each stressor.

I learned to develop some support systems through support groups, online communities, writing (my blog), therapy, exercise and more. I try to do what relaxes me. I think while I am certainly not healthier, I am happier and less stressed.

Now doctors are catching on and prescribing stress management to patients and developing stress management practices. New research shows that 60-80% of ailments are caused by or exacerbated by stress. That is a scary number. I don't feel that my health issues were caused by stress but I do know if I am having an overwhelming day of stress, my aches and pains increase.

Medical centers are looking at offering everything from counseling, nutrition, meditation, yoga, tai chi, and more to help patients get their lives in balance. Everyone could try this by themselves, give yourself a five minute time out when stress starts taking over to close your eyes and relax and clear your mind. Or take a ten minute walk. Or join a gym, start a new exercise plan. Something besides sitting there and stressing.

Tuesday, November 5, 2013

The misled consumers - courtesy of big pharma

I wish to say a big "thank you" to Johnson & Johnson and their marketing departments for misleading so many patients and nursing homes on three of their drugs. For their efforts, they will pay $2.2 billion in fines.

"The settlement involves the schizophrenia drugs Risperdal and Invega, and the heart failure drug Natrecor, the company and Attorney General Eric Holder said. 

Johnson & Johnson and two subsidiaries "lined their pockets at the expense of American taxpayers, patients and the private insurance industry," Holder said."


You think they would have learned from their $1.2 billion in fines in 2011. Oh but they got all that money from the mislead sales they did make so that they can afford these fine.

What a business model, sell things for other than what they were approved and then use the extra money you early to pay fines and legal fees. I should go work there - maybe they would pay me for not showing up!


Monday, November 4, 2013

Keeping the brain alert

Keeping your mind alert is supposed to help with memory and other effects of aging. I hae always been a fan of crosswords and sudoku. Six years ago while I was in chemo a friend told me I needed a hobby (so I would stop calling her so often to whine I think) but she meant well.

I had learned to crochet, knit, sew, and embroider back in elementary school a long time ago.  About 14 years ago I decided to ask my sister in law for help in relearning crocheting as she is very crafty. I started a baby blanket. In chemo it then made sense to try crocheting again. I made scarves for the whole family. Then I added knitting and made scarves for lots of friends. Then I kept knitting.

Now I have millions (not exactly) of scarves and cowls (infinity scarves) to sell. So I started going to craft shows to sell them (so I can buy more yarn).

Now when I go to craft shows I ended up in so much pain that I had to spend the day in bed yesterday. I do feel better but still achy. So I am keeping my brain active but my body may not be able to keep up. Anyone want to buy a scarf?