Monday, March 31, 2014

Positivity

Healthline as part of their numerous efforts in caring for and providing information to patients has put together 14 inspiring breast cancer quotes. A few are below and you can see the rest here.






Sunday, March 30, 2014

So what did I do wrong?

There is a new study out there saying that half of all breast cancers can be prevented. So what did I do wrong? That's what I feel. When I first read this I thought that its good news. But then I started thinking. What did I do wrong to get breast cancer before 50? Is it some how my fault?

I eat a good diet, I get exercise, blah, blah, blah. And there I end up with cancer. Twice. Maybe its my elementary school which is currently being turned down because its full of PCBs. Maybe because I stayed up late, smoked, and drank some. Who knows. But don't make it my fault.

But then I decided what I really don't like is the title of the article I first found: "Up To Half Of All Breast Cancers Are Preventable". That article was based on an article written in CA, A Cancer Journal for Clinicians where the original article is called "Priorities for the Primary Prevention of Breast Cancer" . Its all in the wording. Take the blame away from the patient please.

If you read the original article, it focuses on prevention options such as exercise, healthy weight, alcohol consumption, and more. Patients who drink alcohol, do not exercise, and/or maintain a healthy weight, have a greater risk of developing breast or other types of cancer. That's helpful.

Before breast cancer, I was thinner, exercised and I less to drink about, so go figure

Saturday, March 29, 2014

National Coalition for Cancer Survivorship

There is a national group - National Coalition for Cancer Survivorship (NCCS) - which focuses on advocacy for people living with cancer. I detest the word survivor but I'm okay with it here. Their website url tells it all - www.canceradvocacy.org. They advocate on cancer issues.

Are you familiar with the oral parity issue? That's the one where cancer treatment given as an infusion is paid for by your health insurance which covers most of it. But if the patient is switched to a pill form of treatment, it is covered as part of the pharmacy benefit - usually as a branded premium medication which is covered by a huge copay. The oral parity bill is hoping to change this so that the coverage is the same.

They had a a recent event called "Putting the Patient First" which focused on more issues of payment reform. They also have all sorts of resources on their website and they talk about a lot of other legislative changes in progress. And they have local chapters.

I am a volunteer with the New England Coalition for Cancer Survivorship - or NECCS. Today is their annual luncheon where I helped get together the vendors for a small craft fair. I will bring my checkbook...

As part of the luncheon they award some people who have gone above and beyond. I nominated my oncologist for her cookbook for cancer patients so I am also introducing her.

If you are someone living with cancer and are looking to help in some way, the NCCS is a great way to help. I do not do as much on the advocacy side myself but am happy to help with their events and in other ways locally. Every little bit helps.

Friday, March 28, 2014

Doctors and coping with multiple ailments

Do you consider your doctor to be the be-all and end-all of all your medical questions? "I need to ask my doctor about that...." Or "let me see what my doctor thinks..." Then you accept their words as guidelines for your life - food, exercise, modifications, etc.

Me, I have so many ailments, I take what my doctors say for the most part with a grain of salt (which is sometimes accompanied by a large margarita). The problem is I have so many ailments that sometimes they can't tell. Why do I have a rash/headache/pain? No idea. Maybe its just a side effect of one of your medications... Or from your blah-blah-blah, we don't really know.

If you are like me and have multiple ailments which cause pain and fatigue, it can be impossible to figure out what causes pain and fatigue. I mean I know the bone deep pain in my arm or leg is from fibromyalgia. And that the pain in my lower back is from degenerating disks. And that the pain in my right SI joint means I need to go back to get those pesky nerves killed off again.

But then I get many other pains that meander through my body of unknown origin. My doctors shrug their shoulders and say keep track of it and monitor frequency, etc. Then when one pain is resolved often I find other pains hidden behind them.

Then when I develop new symptoms, we need to figure out the cause. I can get a preliminary diagnosis of something new and then if I learn about it, I find that some of my other symptoms could be directly related. But unless I test positive for the new ailment, it maybe a pile of hooey and I give up on that. My favorite is 'you don't test positive for it but you probably have a similar unknown ailment'. And the best part is then 'there's nothing we can do about it'.

So I take what I learn at one doctor appointment, do a pile of research, and then I go back to my doctors and ask more questions...

The eternal life of the patient and questions with all my ailments.

Thursday, March 27, 2014

Treating Chronic Pain with Exercise

It seems a bit contradictory but exercise helps relieve chronic pain. Its one thing if you have an injury that needs to heal but then they send you to physical therapy to regain range of motion and start movement. It may be include some ouching but it means it is helping as well.

I have fibromyalgia and RA (in case you  haven't figured it out yet) and I go to the gym three times a week. I am one of the 40% or so (or whatever that low number is) of Americans who get the recommended amount of exercise weekly. At the gym, I do 45-60 minutes of cardio followed by strengthening exercises and weights (yup, I can lift the giant 1 lb weights with ease).

Some days are a little harder than others. Yesterday the muscle on the top of my right thigh was very unhappy with some of what I was doing and my left hip told me how I could not do some exercises. But I did finish 95% of my workout which is just fine.

Exercise does make me feel better. Some of my doctors are impressed with the range of motion I have in my shoulders and hips because of my ailments. Exercise and stretching has allowed me to retain this. It has been suggested I try swimming. But since I hate swimming laps, that has not happened.

However there are always overachievers. I am not an overachiever regarding exercise these days. Katie Pumphrey is an overachiever. She swims to help with her fibromyalgia. But if that wasn't enough, she is training to swim the English Channel. No I am not kidding. The English Channel is not what we call an easy swim. To put it in context:

"Fewer people (1,429) have crossed the channel solo than have climbed Mount Everest (more than 4,000), and only 446 of the swimmers have been women. Eight people have died trying since Matthew Webb first accomplished the feat, in 1875 — though the success rate, which was tiny in the early 1900s, has risen sharply in recent years.

If all goes well, Pumphrey will enter the water in Dover, England, on Aug. 8 or 9, 2015, and emerge in Cap Gris Nez, France. The distance is 21 miles, but the shifting tides guarantee that few swim directly across. In July 2010, 56-year-old Jackie Cobell reached Calais, France, after swimming 64 miles in nearly 29 hours."

This will be a feat for the record books as far as I am concerned. So to the non-exercisers out there, I just say aim high and start moving. For those with pain, remember every journey starts with a single step.

Wednesday, March 26, 2014

Your brain on creativity

I have blogged this before that during chemo a friend told me I needed a hobby and I took up knitting and crocheting. That was the fall of 2007. I have since made scarves for almost everyone I know and even ventured into craft shows where I sell my wares at the holiday season. I have become a yarn junkie and am a member of SABLE (Stash Acquired Beyond Life Expectancy).

I have come to like knitting and crocheting a lot. I like to learn new techniques and create different items. I might even make a hat this year.When I feel like crap and not into doing much of anything, I sit and knit and it relaxes me.

Now I have proof on its benefits. Yes there are health benefits to knitting and other crafts. I'm not sure why it took so long for people to figure things out.

"Crafting can help those who suffer from anxiety, depression or chronic pain, experts say. It may also ease stress, increase happiness and protect the brain from damage caused by aging."

Basically when you are stressed, your brain is in the fight or flight mode. It doesn't distinguish between kinds of stress -  another chemo infusion or another PET scan or, to quote the article, a bear attack. But the brain can only process so much information so when you knit/craft, your brain focuses on the repetitive activity and your body relaxes. Here's the fancy stuff:

"Our nervous system is only capable of processing a certain amount of information at a time, he explains. That's why you can't listen and understand two people who are talking to you at once. So when someone starts creating, his existence outside that activity becomes "temporarily suspended."...

...The effects of flow are similar to those of meditation, says occupational therapist Victoria Schindler. Science has shown meditation can, among other things, reduce stress and fight inflammation.

Our bodies are in a constant state of stress because our brain can't tell the difference between an upcoming meeting with the boss and an upcoming bear attack, Schindler says. The repetitive motions of knitting, for example, activate the parasympathetic nervous system, which quiets that "fight or flight" response."

So I am happy to keep on knitting and selling my wares. And now I know that  its helping me in more ways than I expected.

Sunday, March 23, 2014

I'm on a yarn crawl, I'm on a yarn crawl!

No I am not at home. My husband and the giant cat are home to guard the house so burglars forget it. They are also supposed to be repainting the upstairs bathroom.

I left Friday morning to visit my brother who lives in Rochester, NY. I have to drive 400 miles in each direction. When you get to Albany, after over 2 hours in the car, the GPS says "Take I 90 west for 200 miles, then take exit 45". That's very depressing. I don't use the GPS any more until I get off the highway. (Just don't tell my brother I don't know how to get to his new place from the highway without directions.)

So with anticipation of this fun drive, even if I refill the CD player, I have decided to make a few yarn store stops. I have picked out two to stop at on the way there, two for while I am there, and two the trip home. That will be six total which is plenty. I will probably buy too much yarn but it will be fun.

For those of you who don't know, I knit and crochet scarves, cowls, and headbands which I sell at craft fairs in November and December. This keeps me busy year round and gives me some extra spending money in time for the holidays.

I am getting away for a change. I have had a lot of stress and too much to do at home so I need some time away. I think it is relaxing because in addition to spending time with my brother, I have fun with my nieces and nephews and the two new kittens. I am screening my phone calls as well as ignoring my email.

I return home tomorrow night. With a big bag of yarn. And will see a newly painted bathroom I hope. Maybe we will even be able to pick up our new car - which is another cause of stress in itself.

Saturday, March 22, 2014

Please take a nanosecond to feel sorry for Myriad Genetics

They have become lawsuit happy. The Supreme court has said no company can hold the patent to a gene last summer. This means that Myriad Genetics has lost their monopoly, huge prices, and ability to strong arm the breast cancer population with their patent on the BRCA genes Okay that nanosecond is now long over.

Now we can get on the road to reality. Myriad has decided that since they have lost their patent, their lawyers are going to get rich. They are in the "let's sue so we can keep our monopoly as long as possible".

"Last week's ruling by Judge Shelby is perfectly clear about all that is at stake for Myriad:
Although Plaintiffs [Myriad Genetics] have shown that they are likely to suffer irreparable harm through erosion of their test pricing structure, loss of their share of the testing market, and loss of their exclusive patent terms if an injunction does not issue ... Plaintiffs are unable to establish that they are likely to succeed on the merits of their claims.
In other words, Myriad's earnings will undoubtedly take a serious hit from increased competition, but this fact cannot override the substantial doubt about whether they will prevail in their legal claims."

I hate people that are lawsuit happy.

But this underscore additional issues with genetic testing and personalized medicine.

"Not only have the courts pushed back on Myriad's monopoly, at the end of 2013, the Food and Drug Administration (FDA) moved to stop the direct-to-consumer genetic testing company 23andMe from marketing and selling its DNA testing service without approval.

As with all medical drugs and devices we must balance the desire for innovative new treatments with our demands for safety and efficacy. As more labs and companies enter the BRCA testing market, we must ensure that these tests are properly regulated to protect public health and patient interest. Genetic tests claiming to provide medical information must be analytically and clinically validated so we know that what companies are telling customers is in fact accurate. Nor should companies be permitted to overpromise the benefits of genetic testing or to drum up people's fear of disease in order to sell more tests. All genetic testing should be accompanied, both before and after testing, by independent and professional genetic counseling so that potential customers understand the limitations of testing, their individual test results and all of their medical options.

Finally, we should refuse to allow companies to hoard, for their own gain, our medical and bio-data collected through the process of testing. Critics of Myriad have long noted that the company stopped contributing to the primary international database on genetic mutations related to breast cancer, in what is widely seen as a move to further capitalize on their monopoly access to more than a million women's family history and genetic information. Similar critiques have been made that 23andMe is using its customers' bio-data and familial information to launch new business products."

Genetic testing is the new thing. I'm  not ready to turn my DNA over to just anyone. And I would be very upset if they tried to upsell me on additional tests based on what I already have...

But I will follow this story and see where it ends up. But I never felt sorry for Myriad Genetics.

Friday, March 21, 2014

OMG A picture without makeup? How scary!

Okay, this is just dumb. As far as I am concerned this is right up there with the Facebook fad of a few years ago where women posted their bra color or purse color to show their support for women with breast cancer. It was a secret and men were not supposed to know.

But if you are daring you can post a picture of yourself, a selfie, without makeup (!!!) and text it to a UK charity to donate 3 pounds (think of this as $5). The charity has raised over 15,000 pounds (which is somewhere in the $25-30K) range depending on the day's exchange rate.

While I support small organizations which provide local support for those with cancer, I find it sad that we have evolved into a society so dependent on artifice that a selfie without makeup is supposed to be shocking.

I rarely never wear make up these days. Maybe I'm lazy, or cheap, or not hung up on the way I look, but you would not catch me participating in this because I simply hate the way I look in pictures.

On some levels it is fairly ingenious as a way to get people to donate to their organization, the no make up thing just gets me. Why couldn't they just have people text a picture of something they like? 

Thursday, March 20, 2014

How do you envision your cancer?

When I was in chemo, I would think of the chemo drugs as Pac Man icons going along eating up all the bad cancer cooties in my system. The cancer itself was some dark looming elephant in the room. Well not an elephant but a big looming grim reaper with the scythe running all over from the good guys.

I always thought that on a slide in the lab, they would be big and black. Always ugly, never pretty. Never able to become pretty.

It looks like I was wrong.

"A University of British Columbia professor designed and created 10 dresses inspired by microscopic lab photos of cancer cells and other body systems for a project called "Fashioning Cancer: The Correlation between Destruction and Beauty." Designer Jacqueline Firkins, an assistant professor in the university's Department of Theatre and Film, says she hopes this merger of fashion with science will help create a platform where people feel comfortable discussing "a disease we are all one step removed from.""

This is an '...image of astrocytes in the brain [which] work to keep neurons healthy. Green dye outlines the cells' cytoskeleton, while the red dye highlights specific membrane channels. The blue dye shows the cell nuclei. Watching the structural changes that cells undergo help scientists better understand cancer.' It also inspired this dress.
"Mercedes de la Zerda, a University of British Columbia acting student, models a black organza cap sleeve dress with a sheer top and diagonal multicolor organza trim. With this dress, Firkins says she hoped to express that cancer patients and survivors may want to hide parts of their body and showcase others. "You can see through one layer into another. You can show your skin but hide it in another way," she says."

You can see all the images here. The one which comes closest to what I envisioned are the brain tumor images.... Big and black and ugly and looming....

Wednesday, March 19, 2014

Cancer death rates down but...

Cancer death rates are down for the more 'popular' cancers in general in the last few decades. But then the old 80/20 rule kicks in and these cancers get most of the research and as a result the 'unpopular' cancer death rates aren't really going anywhere.

So here's an article on how colon cancer rates are down. It used to be the most common cancer killer in the US. Now it is dramatically down because of screening - those lovely colonoscopies that we all love so much.

However as this Australian article points out the cancers that are not as common, don't have ribbon decorated walks, runs, months, etc, often don't get as much funding and the death rates haven't budged. These cancers include:

Although these numbers refer to Australia and the video includes the comment that people leave the country for elsewhere for treatment for these under researched cancers, I think that the proportion is probably similar elsewhere. And the point is still valid - the cancers that do not receive the research dollars are the ones where the death rates have not declined.

Another area where research dollars are lacking is in metastatic cancer - cancer which has spread and cannot be cured. For example, a very small portion of breast cancer research dollars goes to metastatic breast cancer research. Yes metastatic breast cancer is incurable but if there was more research, patients might live longer and more comfortably.

It seems to me that cancer research gets to the point of here are clues on its origin but less information and research is done on how its spread. I know researchers are trying to find how to stop metastases and there is a long way to go.

So while the big picture may get a nice rosy hint in the news headlines, there are details behind it which aren't quite as bright.
 

Tuesday, March 18, 2014

Am I supposed to be suffering?

I read stories all over the internet and in print about people who are suffering from, a victim of, or a survivor of some ailment I have. I do not consider myself to be suffering, a victim of, or a survivor of any damn thing. I am just living.

I do have a new ailment.... Oh joy. But its not that exciting to me. Its called... drum roll.... are  you ready.... well.... its.... dry eyes. See, its not exciting just like I said it wasn't and I probably blogged about it before. But its just another little pain in the ass thing in my life. A sign that my body continue to fall apart at an amazing rate. Dry eyes don't sound that bad but can lead to long term problems.... But they do not cause suffering or ailing or victimization.

And I get to get another medication with an advertising program - Restasis. This is the one with the perky ophthalmologist who is also a patient... Its right up there with a marketing budget probably the same amount as Lyrica which is single handedly increasing the worth of a couple companies by the amount comparable to the GDP of some countries...

The annual cost for Restasis at retail is $3800. Lyrica is a paltry $3000 a year. What kills me about Restasis is the ophthalmologist told me that Restasis comes in little single use vials which contain about 10 drops each and you are supposed to use one vial in the morning and put a drop in each eye and then toss it and use a second vial at the end of the day. Little plastic vials that need to go in recycling and I hope do not end up floating around in the oceans. The doctor said that I can use each vial for both morning and night so I can stretch it for twice as long. But seriously little plastic vials in this day and age? These could make me suffer itself.

Well even if I gave a new ailment, I don't feel like I'm ailing. But then I never feel like I'm ailing. I just don't. Ailing is a word out of a nineteenth century novel where the heroine is reclining after a stressful afternoon tea or childbirth.

I certainly am not surviving anything more than a boatload of doctor appointments as I have said many times before. I just keep adding to the list of doctor appointments.

But I clearly am not suffering. Never have and never will. Unless its a hangnail or a splinter. Or over annoyance over single use plastic vials.

Monday, March 17, 2014

Elusive sleep

Once again a night of oh so elusive sleep. I can't even blame the cat. Saturday night he insisted on trying to wake me up all night long, alternating with periods of sitting on me that made my back hurt. I was a tad grumpy as a result and ended up cancelling on long scheduled plans with friends to go to a museum which I would have enjoyed.

One of the lovely benefits side effects of fibromyalgia is disturbed sleep. I know I have blogged about this before but I blog in the morning and lack of sleep is often on my mind. Maybe I don't feel as well because I want to go pick up some test results from last week  that I want to read before waiting for doctors to get back to me. A much more efficient system for me.

I also might be cranky about work. I really do like my job. I was hired as a part timer May 2009 and I assumed no benefits. About  a year later I noticed on my pay stub I was acruing paid time off. So I asked and was told yes it was true and I could use it. Then the big boss noticed this last week and I think that is going away. The problem is if you mistakenly gave an employee a benefit, you can't suddenly take it away with out some resentment. So this week I am mad at my job.

I'll get over it I'm sure but in the meantime I'm cranky. And lack of sleep doesn't help.

But its a dark and cold Monday morning. When I say cold, its in the upper teens right now, with a high due of upper 20s. Average is 43. I would prefer 43. Instead of 18 dark cold degrees right now.

See I'm cranky from lack of sleep. And maybe test results. I hope I sleep tonight. I don't want to be cranky all week!

Sunday, March 16, 2014

I need to start my own

Not that I have any plans on going anywhere soon. But I read this obituary yesterday and, after laughing at several points, decided I need to write my own.

Someone's death, while sad, doesn't mean they should be remembered with sadness but by how they lived their  life. Walter apparently lived his life with humor and that is how he is remembered.

I want to be remembered how I am and not by little bits of information such as marital status, cause of death, blah, blah, blah. Let's keep life interesting. I better start writing stuff down now so I remember what I want to include....

I just wonder how long Walter's family will keep his ashes around. (And what are you supposed to do with someone's ashes anyway?)

Saturday, March 15, 2014

They want to take it back

Its pretty hard to say something that makes international headlines and then say "I want to take it back"

Back at the beginning of February, I blogged about this awesome new stem cell discovery on how they can be made but dumping cells in an acid bath or something equally scary. It was such a huge discovery, other disgruntled scientists who didn't make the awesome discovery themselves immediately started protesting saying it can't be possible and other less than polite terms.

Now the big news. The first guy was wrong and is trying to 'unannounce' what he said - and since its on the internet, you know it will NEVER go away. And the other guys were right. Actually there were two authors for the study about acid baths, and one guy wants to withdraw and the other says they are still right.

Who knows. What I do know is its on the internet and it will never go away. They will both live on either in glory or infamy. Cancer research took a two steps forward and one step back in the last six weeks, or is it one step forward and two steps back? Whatever credibility they gained is now gone because it will forever be doubted.

But you can't take it back if its online. Sorry.

Friday, March 14, 2014

Fibromyalgia foibles

I have been taking my time to deal with fibromyalgia as it is somewhat complicated. Its not easily understood by most people - as it can have many differing symptoms - all of which have one thing in common: PAIN.

My husband knows that he doesn't understand fibromyalgia either and he wants to. He signed us up for a community education course at a local school on fibromyalgia. Originally only he was going but then it turned out both of us were going. I mean I should probably learn as much as possible about one of my many ailments. I know how to spell and pronounce it but there is obviously a lot more.

We went to the class. As expected it was basically a local practitioner shilling for clients. What was interesting is that she is a certified acupuncturist, Chinese herbalist and a practitioner in Western  medicine so she combined both schools of treatment. She also could explain the fibro pain points to my husband so he understood more.

Some of her information was  a little dated but she did offer some options and thoughts about differing triggers for fibromyalgia - such as major stress. I said how about a cancer diagnosis? She thought that was a possibility.... See, cancer is the gift that keeps on giving.

Coincidentally, I received an email from the National Pain Foundation for a survey on "Do fibromyalgia medications work?" Of course it included Lyrica and I completed it and signed up for their newsletter. I mean I should be in their fan club considering on how much time I spend in pain even though I am on so many medications.

The NPF is different than the American Pain Foundation which is different from the American Chronic Pain Foundation which even has a local support group. But then there is even the National Fibromyalgia Association.

But I still need to educate myself. My husband did learn a lot at class. But still I have to deal with my fibro... and the fibro fog that comes with the pain.

Thursday, March 13, 2014

The cancer patient's interpretation of the doctor's advice

I came upon this article by a surgeon who has partnered with some cancer patients to come up with this advice when you are blindsided by cancer. While I agree with it overall, of course I have a few comments.

His advice is summarized as:
  • Take a breath, seriously
  • Own your cancer
  • Don't run to the internet
  • Select your physician partners
  • Understand two critical features of your cancer
I agree with to take a breath and try to relax.  You are not going to die tomorrow (unless the bus doesn't miss). You have time to breathe and try to figure out what is right for you. You can take the time to absorb with what you have just learned. Go home, sit down and think about what you have learned and what you want to know. Then you can get back with your doctor for more information and options.

Own your cancer and your life. Don't just give up. Keep ownership of your life and take ownership of your cancer. Be a participant in the decision making process. Get a cancer buddy/caregiver to help you through this and hold your hand, bring your bowls of ice cream, and glasses of wine.

I think you should go to the internet for information with the caveat that you find out the good places to go for information on your cancer. Do not wildly Google your cancer and the words 'death rates' - you will only stress yourself out. But if you have information to direct you to where the information is about your cancer where you can learn the right kind of information which is not a pack of lies, aka a pile of hooey. My tip, if you do not know where to start, always start with the American Cancer Society.

I never really have selected my 'physician partners'. What I have done, is ditched any which I did not like. But I have never physician shopped or second opinion hopped.

Two critical features about your cancer are:

"First, you must learn how your specific type of cancer behaves, as each (breast, prostate, whatever) is unique. Second, you must understand your specific cancer stage."

This will help you greatly to understand where you are and what are your options. You are putting a name on it. Which leads me to my personal requirement:

You cannot have an ailment or take a medication without knowing how to both spell and say it properly. This is another way you take ownership of your cancer and learn more about it.

Okay, so the patient came through with agreements and disagreements but I think we both can agree that cancer should not take you over. You are still you.

Wednesday, March 12, 2014

Today my attitude is "I don't care"

I would have started with some extra adjectives in there but didn't think they were appropriate for the title. How has my week gone? Well if you are reading my posts, you can tell it hasn't been the best week. By the time I got to work yesterday afternoon my co-workers said I looked either very tired or "enough already".

But I still had to work for the afternoon and go car shopping. I was exhausted before car shopping and ended up in bed early - maybe I am over this 'spring forward' crap.

What was the medical roller coaster like yesterday? Hmmm well the part about me was that my doctor's office called about my blood counts and one of them is a 'bit' off and they had questions for me. Of course the doctor is on vacation so they will get back to me next week.

This morning I go to the neurologist to learn what the hell is going on with my hands and what is known as 'bilateral tingling' in medical speak. And it could come back with another 'I don't know' and more tests or an express pass to the hand surgeon for carpal tunnel surgery. Whatever the answer is, I am not very comfortable with this as I associate neurologists with needles and nasty tests.

After that I go to work. As a result of the current car issues (anyone want to buy a car?) I am driving my father's baby - which is a brand new electric Prius with only 4000 miles on it. I am petrified something will happen to it and I will be disowned. He has been to sick to drive so it is actually very nice that I can use it for a few days while we figure out the new to us car business.

I hope to get to the gym this afternoon to work off some stress but am not sure if that will happen because we have to go back to the car dealership and see if we can make a decision. Which car, how much to spend or do we move over to another dealer?

I don't care. I have tuna fish on a salad for lunch which I enjoy. That might make me feel better and less stressed. But other wise I really don't care.

I think I'm going for apathy today to avoid undue stress.

Tuesday, March 11, 2014

Do you ever have one of those days?

Yesterday I blogged about how it was supposed to be the worst day for the year because of the time change. I was right, it did end up being a really aggravating day but it had nothing to do with lack of sleep.

First it started with we couldn't get the (damn) car started. Its my Saturn that I bought new in September 1999 so it is a bit old. It has a paltry 156,000 miles on it and I thought it should go for a few more years. It needs an ignition cylinder because the (damn) key won't turn on a regular basis. We are sick of pouring money in it so it is time to move on. But its my favorite car. I am not ready to give it up but its time.

I had to jump out of bed and throw on some clothes to drive my husband to work without thirty seconds notice. I wore my pajamas with a sweatshirt and jeans, boots with no socks, and didn't brush my teeth or hair. I got back home at 8 am and had to be at the hospital for a 9am EMG. That meant I had approximately 30 minutes to shower, dress, eat, brush my teeth, pack my little bag of stuff to take, and my gym bag for later.

I rushed to the hospital, got there in the nick of time, after getting stuck behind three (damn) school buses.

Have you ever had an EMG? They suck. Yes that is the only word to describe it. They send jolts in your hands and then they stick needles in you and grind away tensing muscles that really hurts. Definitely not a fun test.

After all that the answer was inconclusive for carpal tunnel, no real idea why I have tingling in my hands, and off to see a neurologist. I hate inconclusive test results, especially when they are nasty ones. Then I went to the gym to work off some of my aggravation.

Does anyone want to buy a car?

Monday, March 10, 2014

The worst day of the year

Today is the worst day of the year for Americans. We are all going to be wandering around sleep deprived. Watch out and stock up on coffee.

I heard yesterday on the radio (which is much more reliable than the internet) that it takes about a week for a human's internal clock to adjust to this hour ahead business. Monday is the worst day for accidents nationally as there are many sleep deprived drivers out there. Productivity will be down as well.

I have always hated the time change weeks. I just never get enough sleep for a week. It makes me whiny or even cranky. Crabby too!

To top it off, I am looking a weather map which shows more than a foot of snow for the middle of this week. If we had to spring forward, where the hell is spring damn it!?

Oh dear, crankiness may be showing already. Oopsie.

Sunday, March 9, 2014

I took a step back

Even though I only work part time, sometimes I feel as if I am rushing from one thing to another all week long. Recent weekends have included family and other events where I have not had the downtime.The problem is at the end of the weekend I do not feel rested physically or emotionally.

This weekend we ran away. Yesterday had a predicted high around 47. Based on that and the fact that it was low tide at 1030am, we ran away and walked on the beach for an hour. It was a sunny day. It was low tide. There were people with horses all over the beach. It was amazing. It was what we needed. You will note the snow on the dunes in my blurry picture.The water temperature was 36 so we opted not to go in.

We stopped for an unhealthy meal of fried seafood and came home and relaxed and had a healthy dinner. Yesterday topped out with a high of 55.
Today I slept in. I feel much better physically and emotionally.

Tomorrow will be a long day. I am having an EMG in the morning to test for carpal tunnel. That is a not fun test of needles and jolts. I wont feel relaxed after that. And then I will go to work if I can. Ick. Not fun. I will just ignore that until tomorrow.


Saturday, March 8, 2014

I used to be jealous

Back in 2007 when I had radiation for my breast cancer. I had to undergo the traditional radiation treatment which meant 37 visits spread over 7 weeks - five days a week that lasted FOREVER. I knew people online who were getting the short version and getting radiation for five days - brachytherapy - with two visits a day. I was jealous because I was (and still am) sick of going to the (damn) hospital.

I had asked at the time and was told by my radiation oncologist that they did not offer the shorter option nor did most hospitals in Boston at that time. A few years later I attended a conference where I learned they were starting to offer the shorter option as well as expanding their other services.

Now new research on women over sixty who had brachytherapy after a lumpectomy are more likely to have a mastectomy five years later. They were more likely to have treatment complications that resulted in the mastectomies.

ASTRO is considering new guidelines for who would most benefit from brachytherapy and cautionary and unsuitable criteria. The number one criteria seems to be that it is best for women over sixty.

Since I do not fit their criteria I am glad I did not get brachytherapy as it could have increased risk for mastectomy. I am not jealous any more.

Friday, March 7, 2014

Being prepared for the realities of chemotherapy

I have always thought being proactive was a good thing. Planning ahead is good, not bad. I try to do this whenever possible - occasionally my husband has accused me of hoarding because I stock up when things are on sale.

Sometimes this is not possible. An example of this is when a cancer diagnosis turns your life upside down. You hop on the cancer roller coaster and are sent to surgeons, medical oncologists, radiation oncologists, and more. You are told it will be stressful but nothing prepares you for the realities of chemo.

In chemo, you go from feeling normal to feeling like you are run over but a bus and a herd of elephants, several times. You lose your hear, your brain, your fingernails, your appetite, and sometimes question your own sanity. You go from being able to get through your day to day life to gasping for breath as you walk up a short flight of stairs. Go read about Jamil and what chemo did to him - going from triathlete to chemo patient.

Its like there is this big secret world of the chemotherapy patient. Nurses and doctors can't tell you exactly what it will be like because every cancer is different and every patient is different. And because as medical professionals and HIPAA, they can't tell you all the nitty gritty details. Its just not possible for them.

But along comes Chemoflage where they help prepare women for chemotherapy - a bit of proactivity. Its a standalone educational program for women undergoing chemotherapy according to their website.

Unfortunately this is based in Atlanta but I would love to see it nationally. This is the kind of program that would help any person going through chemotherapy. Being a bit more prepared for chemotherapy would be a huge asset.


Thursday, March 6, 2014

Now that is a misconception

Yesterday afternoon I went to the gym after work. I know a bunch of people there, mostly women, that I chat with while there. Do I remember their names? Of course not. I am sure we introduced ourselves in the past. I recognize them, they recognize me. We chat about the latest  news, weather, our inabilities to balance on one foot as much as we should, and more. And skip addressing each other by name gracefully.

There is one woman who is always relatively stylish, excessively thin, and very much a doer - always on the move. I can't remember her name if you paid me a million dollars. She always says she likes talking to me because I am so perky and positive all the time. (???) Now that is a misconception.

Yesterday I stopped her by saying I was ready for winter to be over. She replied she never heard me say anything negative. (!!) I said it was due to be above freezing for five days in a row so our giant glaciers (still 2.5 feet of solid snow drift I can walk on in the front yard).

She said she was glad to hear me say a positive thing because I never say negative things. I'm always perky. Yes she called me perky.

She has such a misconception. Not that it is a bad one. I think I won't fill her in on the real me.

Wednesday, March 5, 2014

Reunions and what has shaped my life

It sneaks up on you. This year I have both significant year reunions for my college and high school. I am getting requests to attend both - which I probably will. Life has changed greatly for me since then - 30 and 35 years ago.

I am still in touch with just a few friends from high school. Some of them know about my life and health issues and some do not. I went back late for my sophomore year in college due to thyroid cancer treatment and it was a much smaller school so more knew about it. I am in touch with more college friends (they are the most interesting part of my Facebook feed)

So the question looms, when one goes to a reunion how to address health issues? I have a college friend who has a bad back. At the last reunion I attended she was fairly open about it and lay down on a pew during the chapel service to avoid back pain. I sympathized with her on that.

But what about other health issues? The hidden ones. I don't feel like telling everyone about cancer one and cancer two - never mind RA and fibromyalgia. But then they are the reason I am not attending the evening events on my college weekend or staying late at my high school dinner.

The shallow people in high school are still shallow. I reconnected with someone who was once one of my closest friends on Facebook. We talked about getting together but once I said 'breast cancer', the offer was dropped.

Then there are the people who hear the word cancer and either develop pity or suddenly spout well-intentioned, but unfounded, advice on what I should do. I am not up for either of those options. My choices are to keep my mouth shut when someone says what have you been doing for the past 30/35 years and stick a smile on my face. Or skipping the issues which have shaped me in recent years.

I am on the fence on how to handle these. Reunions are not meant to talk about the low lights, but the highlights. But sometimes the low lights dominate one's life.

Tuesday, March 4, 2014

Thoughts on mammograms and false positives

There has been a lot of controversy in recent years about the benefits of mammography and false positives. I read Dr Susan Love's take on how "Mammography is like the TSA" and the comments left by women. It made me think.

I started having annual mammograms at age 22 because of a benign fibroadenoma so I am sort of out of the discussion. My breast cancer was discovered 23 annual mammograms later at age 45. I went to all those mammograms without any concern until the one in 2007 (and if you are trying to figure out how old I am, currently I am 37) which turned into an ultrasound, a lot of denial on my part, followed by two surgeries, chemo, radiation, and hormone therapy to where I am now.

But if it was me to do it all over again, at this point I would rather be over treated and have a few false positives along the way than to have a cancer missed. My cancer could not be felt in a manual exam. My benign one way back when could be felt. My subsequent benign fibroademona, six months after my diagnosis, could not be felt either due to scar tissue. But it was visible in an MRI and ultrasound.

If you think about it, we have a tool available to us that helps with early detection and that alone does equate to saving lives. Its like wearing your seat belt. If you wear it every day, you are making your best effort. But on the one day you need it when that car pulls out of a side road in front of you, you are saved.

Dr Love makes an analogy of a mammogram like TSA screening which I can understand as well. Any effort we can make to help us live more safely makes sense. You can opt out of wearing your seat belt at your own risk. You can opt out of your annual mammogram at your own risk. But there shouldn't be someone blocking you from access.

The risk for breast cancer starts to increase for women at age 40 so there is no reason to delay mammograms until age 50 - just because the risk is significantly greater. As Dr Love points out there are many types of cancers and each are different. She raises the question that we may need to reevaluate the goal for early detection . But until it is changed, I am sticking with my annual mammogram.

Monday, March 3, 2014

Participating in the post cancer life without criticism

Yes we must participate in our lives post cancer. We need to do the right things in order to stay healthy and help reduce the chance of recurrence. The best things we can do are the things that all adults should do - they simply become more important:
  • eat right
  • maintain a healthy weight
  • exercise
  • reduce/avoid alcohol consumption
But as an additional stressor, we tie in the emotional impact of our cancer diagnosis.

Dr Bechold, here, writes about life post cancer as not a passive sport. I agree with her points but disagree with her tone. First of all, clearly although she has been a doctor for 30 years, she clearly has never been diagnosed with cancer herself. Back to if you haven't walked the walk, you can't talk the talk.

Second of all, she seems to blame the patients for their non compliance with recommendations for exercise, healthy lifestyle, and recurrence risk reduction.


"You can’t see that breast cancer survivor every 3 to 6 months, watch her weight balloon up, and not ask her what is causing this to happen. We must take time to talk to people and ask about their lives and how they are living each day with an eye on remaining cancer free. I had one patient who was clearly having some anxiety issues. As we talked, I found out that she was self-medicating every evening with a bottle of wine. While she graded papers! After I picked my chin up off the floor, I advised her that this was not an acceptable coping mechanism."

Hmm... so back to the patient whose weight was ballooning up. Did she ask about weight gain caused by Tamoxifen or aromatase inhibitors or chemotherapy or just plain emotional stress? Maybe what we used to eat and maintain a healthy weight, now makes us gain weight? I know I have tried to eat healthy and my weight has definitely increased. I go to the gym regularly but my medications cause weight gain and my other ailments have reduced my ability to move around. I know many other cancer patients who deal with similar issues.

And to the patient who self medicates with a bottle of wine - clearly a destructive behavior - but why was she so astonished? If the patient had anxiety issues, why hadn't other interventions been taken previously such as therapy?

Finally, I am somewhat appalled by this closing paragraph:

"No more excuses. No more “I don’t have time,” or “It’s too cold out,” or “I know I should, but…” It has to be done. Just like getting up every morning and going to your job—no-shows are fired! If you don’t buy gas for your car, it will not run. If you do not buy food, you will be hungry. There are just things you have to do. Compliance is required for a pill or a lifestyle and failure to comply will compromise the outcome. No matter how many tests we order."

From the point of view of a relatively healthy, active doctor, who looks fairly thin in her picture, without a cancer diagnosis under her belt, I am sure she thinks its easy. But she needs to walk a mile in hour shoes before she can criticize us. I am just glad she is not my doctor.

Sunday, March 2, 2014

A look back on blogging

When I started blogging almost seven years ago, I wrote for my friends and family. Now my blog is read by people I don't know. There have been ups and downs.

Some days I have brilliant ideas and write about them and no one comments. Some days I have brilliant ideas and forget them before I can start writing and end up writing some pile of drivel that people read for some reason.

Some things I write about I believe are really boring. Sometimes I have attempted to be controversial. I think I am mostly boring. But hey I am not writing a screenplay or anything so I can be as boring as I want.

My blog has been picked up by places far and wide - everything from Parade Magazine, to Beforeitsnews.com, to Opposingviews.com, and more - for whatever reason I have no idea. I have been selected by Healthline for one of the best breast cancer blogs - another thing I find amazing. Why do all these people care about the crap I write anyway?

I get to follow other people's blogs, and some people actually follow my blog (very impressive). My blog even gets shared by some of these followers.

I get comments sometimes. I get spam comments offering me a spiritual or miracle cure for cancer. Or other crap. I also get supportive comments which are nice.

I will say one of my top blog posts ever is "A Lame Blog Post" that ended up on Beforeitsnews I think. And got a comment along the lines of: "This is such an awful blog post". Then why did you read it if said it was a lame post?

Saturday, March 1, 2014

Life Changes

As I look back on my life for the past few years, I see changes. Back in the dark ages, before that second evil cancer, I used to be a focused business person. I was the marketing manager or director for different companies and non profits. I worked full time, in downtown Boston, and I dressed up for work every day. I went to the doctor maybe 6 times a year. (I have never been the one doctor appointment a year girl).

Now I go to the doctor on the average of weekly. I have held my current part time job for almost five years where I work 18 hours each week when I can which has gotten more and more difficult. Even in the five years since I have held that job, I can see more changes. Even in the last 18 months since RA and fibromyalgia showed up, more changes.

I never thought I would be someone who sat around and watched Lifetime movies, HGTV, and even some (gasp) reality TV. I also knit/crochet, read, and surf the evil internet.

Now I carefully plan what I do to allow for downtime and rest. I look for the quality of life in the things I do. I try to help others as much as I can. I have adapted (mostly I think) successfully. But life continues to change. And it will.