Monday, August 31, 2015

That awareness thing

Am I the only one on the planet who thinks we do not need more awareness of different cancer types? I mean yes there are some really obscure ones that need awareness and more treatment as well as metastatic cancer definitely needs more options. But really, do we really need an unending calendar of fashion shows, races, walks, and other events?

I may be cynical but I think most of us are too aware of cancer these days. Or is it just me because it has been part of my life for so long?

Saturday, August 29, 2015

Why am I so tired?

I am tired. A lot. I need naps. I am sure a doctor will tell me its due to fibromyalgia or rheumatoid arthritis. All I know is I need a nap. I slept almost 12 hours last night and feel that I need a nap later today.

Yes I will talk to my new primary care on Monday but I still will take naps. Its not just that I need naps, I don't have the energy to do a lot of things I want to do, such as see friends.

But I digress. Its been a busy day so far and its not even noon! I'll have to fit in a nap later.

Why do people read my drivel like this? Its awful.

Friday, August 28, 2015

How confident am I on my health?

This is a tough subject for me. I am at a point where I feel okay most of the time but am not sure I feel well enough to make significant changes. I mean should I look for a new job? At my current job, there are some pluses and some minuses. The negatives are things like commute distance (farther than I like), lowish salary - decent but I wouldn't mind more (who wouldn't?). The pluses are total flexibility in my schedule and I am an established employee.

If I left my job I would have to establish myself somewhere else and have no seniority. If my health acted up and I couldn't work for a week or so (not an unknown event), would I jeopardize it? I am hesitant to look for another job because I am not sure I am healthy enough to establish myself at a new one.

On the other hand, I see my new primary care on Monday and I do NOT expect anything new and unexciting in my health. I don't think I have any bad things going on (but not to jinx myself or anything).

Thursday, August 27, 2015

The 'joys' and solitude of a second cancer

When diagnosed with a first cancer, we are all gobsmacked, appalled, overwhelmed, stunned, depressed, shocked, awed, overrun, and more as a result. You struggle through treatment and the ensuing body changes and emotions and slowly return to that so called 'new' normal and life resumes.

Then when cancer, the 'gift that keeps on giving', shows up again, you start all over again. It can be a dreaded recurrence or metastases or you can start all over again with a new cancer. Second cancers are not recurrences but new primaries. Such a joy. Not really.

When my second cancer showed up, in some ways it put me back to where I was emotionally but I was better prepared for it emotionally. And I was more proactive in coping with it. I joined support groups, on and off line, got therapy and worked hard at accepting this new health disaster.

However, I was basically the only one I knew who had had two cancers as me. Actually I know one other person in the world who had both breast cancer and thyroid cancer. (I know there are other people who have had these two cancers because it is not that uncommon that they show up in the same person but the only person I could connect to was in Europe.) We were both in the same online support group. She posted a message asking if anyone had had both and I responded.

With one cancer, you can find a ribbon to support you, a group of people like you with the cancer, and you can all bond with each other. Or you find a group of people have had a single cancer and you all can talk about the joys of treatment. But with a second cancer, you become an outlier. Most people only get one cancer. The multiple diagnoses are much fewer.

This is starting to change. New research (because we always need more research) shows that one in five cancer diagnoses are second cancers. In the 1970s only 9% of cancer diaganoses were second cancers. There are many reasons for this:

"About 19 percent of cancers in the United States now are second-or-more cases, a recent study found. In the 1970s, it was only 9 percent. Over that period, the number of first cancers rose 70 percent while the number of second cancers rose 300 percent.

Strange as it may sound, this is partly a success story: More people are surviving cancer and living long enough to get it again, because the risk of cancer rises with age."

So since I was young to get my first cancer, before age 20, and young to get my second cancer, before age 50, am I doomed to get more cancers? But at least it won't be as lonely as this second cancer rate continues to rise.

Wednesday, August 26, 2015

More than one ailment

So I read the news, a lot. And probably I read too much news and especially health news - searching for the elusive cures. But in reading the news, I see lots of different opinions and announcements as one would expect.

Two things caught my eye this morning. One reminds us that breast cancer is not the main killer of women. Its heart disease. While we cover the world in little pink ribbons for breast cancer, we need to remember heart disease and other ailments are out there as well and that also kill people.

Another article I read is about a woman who blogs about life with fibromyalgia. I read the article and then thought for a few minutes (a dangerous proposition I know). Yes she is struggling with fibromyalgia. But there are people out there, like me, that have fibromyalgia and additional ailments. So those struggles with fibromyalgia are piled on top of issues with other ailments or issues.

When we are diagnosed with an ailment, it becomes the hyperfocus of our lives. But we need to realize that we are not the worst off, there are many others who have their own pile of problems, including poverty, mental illness, and more and are in much worse shape.

Imagine life with your pile of ailments and issues and compound it with additional ones such as poverty, lack of health insurance or transportation, isolation, or other issues.

I make myself sometimes peel off my layers of focus on my life and keep the awareness of others who are worse off.

Tuesday, August 25, 2015

Back to work....

Today I am back to work after almost three weeks off. I had to dig around to find a pair of pants and haven't yet found my shoes. Summer vacation means shorts, sandals and sneakers, not long pants and work shoes. Our lunches are made (yes I make lunch for both of us every week day) but the nice cat is out so I have to get him back in before leaving. The evil cat is busy plotting our demise....

Yesterday I had a good PT appointment. The therapist thinks that I probably didn't damage any major ligaments and probably only the meniscus, which sometimes does not require surgery. It depends how it heals and how badly it was damaged.

Also my rheumatologist thinks I am doing pretty well - this means no blood work for two whole months and no follow up for three months. Sometimes I have blood work every two weeks and appointments every six weeks so this is much better.

Finally my therapist is an idiot. Okay maybe a little harsh but she doesn't seem to understand my family dynamics so it  was a fruitless discussion. She may become my former therapist shortly. After every appointment with her, I wonder why I am still seeing her. But I try to manage the amount of change in my life and next week I see my new PCP for the first time. So the jury is still out but its not looking that good for her. The real decision is do I still need a therapist.

But now to find the cat and my shoes so I can go to work. Maybe they missed me....

Monday, August 24, 2015

Physical therapy

This morning I finally will start physical therapy for my knee, nearly four weeks after falling. I have opted to have my PT at the gym instead of through the hospital. There are several reasons for this.

First of all, after my initial appointment, I can do my PT on my own instead of having to juggle three more appointments each week. I just don't have the patience for that. When I have PT, I do my exercises every day. Most physical therapists have told me many patients only do their exercises at their sessions.

Second of all, its free. I won't get three sessions each week for free but I will get a session every week or two, and free advice when I want. Yes I have health insurance but I can save the copays, and save my insurance company their share. This makes it a win-win (I hate that term) situation as far as I am concerned.

Last of all, I have had PT for my knees several times so I am aware of what to expect. I know my biggest problem won't be which exercises to do but which ones I am able to do. Between my back issues and hip bursitis, I physically can't do many of the exercises.

So much fun, more than I deserve.

Sunday, August 23, 2015

On ignoring doctor's advice

I am not going to say doctors are gods or anything, but they did go to school for many years more than I did so I can easily admit that they might know more about medical crap than I, even if their bedside manner really sucks at times.

I also strongly believe that as patients we owe it to ourselves to do our research, listen to our options, and do what we feel will help us best. And if this includes juicing, yoga, fasting, acupuncture, turmeric, coffee cleanses, or whatever, we also owe it to ourselves to listen to the advice of our medical professionals.

It is a real shame that some people die when they choose to ignore medical advice and advancements. New research out of Australia focuses on young cancer patients who are ignoring medical advice to cure their cancer through diet changes and result in unfortunate outcomes. These popular bloggers are not properly trained medical professionals so its not that surprising that these are the results are what they are.

If diet could cure us, we wouldn't need doctors.

We must listen to our doctors advice, and sometimes question it, but heed it for the most part. If we don't listen to our doctors and heed their advice, we can't fully question it and then make our good decisions based on our experience with it.

Saturday, August 22, 2015

I haven't blogged

Did you miss me? Actually I am around, I am stressed (no new health disasters), I am tired, and I am still without a laptop....

I hope to get my laptop back early this week. I have two doctor appointments on Monday and start PT for my knee. And have a PILE of laundry to get through.

Maybe by the time I am back to regular blogging, they will have discovered a cure for cancer, rheumatoid arthritis, fibromyalgia, and a bunch of other ailments. And world peace.

Thursday, August 20, 2015

Americans united against big pharma

Sometimes I wonder if I am the only one who doesn't approve of  big pharma. And now it turns out that in general more of us disapprove of big pharma and think they are ripping off patients who rake their prescription medications. Its nice to know I am not alone in being critical.

You can read the article here. Big pharma companies have a lower favorability rating than the erect of the healthcare industry, airlines and banks. And only slightly more favorable than oil companies.

Wednesday, August 19, 2015

Over focused?

Maybe I am a bit too focused on health issues and my health specifically. I admit to checking the health section of every news source I look at. And then I read articles about new research showing women need to be more vigilant for breast cancer or some other ailment. Really? Can't we all just go back to our annual physical and let our primary care tell us we are fine?

I am fed up with focusing on my health. I am tired of being vigilant and stressing about one ailment or another, never mind any potential new one. Maybe I need a new hobby, or to be healthy? That's it, I'll be healthy again. As if that will happen.

But maybe I need the mindset of a healthy person. What is the mindset of a healthy person?

Maybe I'll just get another hobby.

Tuesday, August 18, 2015

Finding the balance

More tests or fewer, more meds or fewer. Does this mean fewer diagnoses and more deaths? I don't think it has to. We just need to find the balance.

We need to focus on finding, not what is the most we can do, to what is the best thing that can be done for the patient. Go read this article to learn more. I strongly agree with this theory.

I can't tell you how many times I have felt over-tested, -poked, and -prodded, because of 'my medical history, they have to be sure'. I can't tell you how annoying that is. Really? Can't they just say that's the best thing for you? Or is that not what they mean?

There is a current leaning in the medical/insurance world to cut down on the amount of tests, scans, and medications for patients. American medical costs are the highest in the world and American patients are blasted by ads and mailings from manufacturers on the newest, most expensive treatments, which are often unnecessary. And patients ask for more scans.

I get it. I have asked doctors why no more scans or tests? And the answer is 'there are no reasons to have any scans, there are no changes'. I can live with that. And I get mailings from Pfizer to go on Xeljanz, which is probably no better than my current drug combinations. And that new drug costs a fortune.

There is a tiny part of my brain that screams 'cure me', give me more tests, find a fancy pill, do something so I can go back to my former healthy self. But the rational part of me knows that isn't a reality. I can dream can't I?

Are any of these people who are so upset about not enough testing and medications patients? If my doctor says this is what's best for you, I'm happy. Its the right balance for me.

As patients we need to accept what our doctors say is enough. And we still need to be vigilant against under treatment, but that's another story.

Monday, August 17, 2015

Technical Difficulties

I hate technical difficulties. One of my main responsibilities at work is IT support for the company. I troubleshoot, set up computers, install software, and more. I also help friends with their computers as well. Therefore I hate it when I have technical difficulties.

Right now my laptop is in ICU at the local computer store. The preliminary diagnosis is that the plug where the power cord from the wall outlet plugs in has died. The laptop didn't recognize the AC adapter so I couldn't charge the battery, and if you moved it a tiny bit (or not at all), it would lose contact with the AC adapter and shut down. Not fun and basically made the computer unusable.

I will know in a couple of days if its an affordable, sensible, repair. The laptop is 3 years old so it doesn't make sense to spend a lot of money on it. And I really do not want buy a new computer right now. Nor is it backed up (which is a cardinal rule in the IT world).

In the meantime, I am using my phone and tablet for technology. Its okay but not great. Yes I can access the internet and my email but the on screen keyboard is a PITA. And all my files are on the laptop so I can't take care of some volunteer work. Nor do I have all computer programs that I use regularly.

But its not health related and it is aggravating. Grrrr.

Sunday, August 16, 2015

And how am I doing?

I blogged about my difficult decision. I blogged about our new cats. I haven't blogged about me.

Honestly, I am not doing that great. I have been exhausted for a while. On vacation I would sleep a lot and was feeling caught up on sleep. Since coming home, I have been exhausted. After two nights in our bed, I have slept well but am still exhausted. I woke up a while ago and am still in bed and will probably go back to sleep.

My knee is a clear source of stress. It has a tendency to give way, even while wearing a brace, which is not fun. I start PT next week and will see how it goes. I plan to talk to the physical therapist about my knee giving way before I call my doctor back. Its not making me happy.

I am also feeling emotionally drained. It was a big effort to leave our long planned vacation. My first thought on driving home was to call my therapist and get in to see her. But I am not sure of my schedule this week and I have an appointment in a couple weeks anyway. Maybe I just need to go into emotional hiding for a bit and lick my wounds for a few days.

In some ways its a bit of relief that I stood my ground and left. Everything is now out in the open.

I need a nap. Bye.

Saturday, August 15, 2015

Life with the new cats

Last April our 20 year old, much loved cat died, basically of old age. We were very sad and got new cats in late May, who have been settling in nicely, and us with them.

Boots is the very nice, if somewhat skittish, cat who needs a lot of attention. He is gray and white with 'boots'. He has warmed up to me, and after being gone for a week he really wants to snuggle. And have his ears scratched.

The other cat has had a variety of names. He came to us called Penguin, as he looked all black with a bit of white on his chest. But he had very thin fur and the white was his skin showing through. We started calling him Peanut because he was so small. And his fur grew in and he is really a black and dark brown tabby. Then my husband said he looked like a cat from his childhood which his mother had named Zdpot (which is what you take for the 'ackers'). He is a lot less cuddly and has a tendency to bite.

Our cat/house sitter didn't put up with his crap and smacks his nose when he tries to bite her. She also calls him TD for 'The Devil'.
 
Yes that is clean laundry he is sitting on. Can you see it in his eyes? He as a tendency to leave us little gifts and came with ear mites which he shared with Boots. Both came out of foster situations, but they show signs they will be friends, or frenemies, as cat are. They chase each other around an then smack each other and the sleep in a pile of paws and tails.
 
And they are a nice welcoming committee when we come through the door. What I need often.

 

Friday, August 14, 2015

A difficult decision

We left last Saturday on a two week family vacation. We returned this morning. Why? Because I am done putting up with my sister's crap. She has made much of my life miserable. How? Let me count the ways.

In junior high or high school, back when I was experimenting with make up, one day I got to the bus stop with her and evidently had a bit of eye shadow on my nose. Did she say something to me? No, instead she got everyone else at the bus stop to make fun of me and then after school complained to my mother that I embarrassed her in public. Yes this was a long time ago but this is an example of the kind of thing I grew up with.

I asked her once to give me to give a ride to an appointment that I could not miss. I also had surgical drains in and couldn't drive. Could she get me there on time? No. And when I called her constantly to find out when she would be there to pick me up, thinking I might need to drive myself when I shouldn't, she didn't pick up my call because she was yakking with a friend and just kept ignoring my calls. I have never asked her to drive me to a single medical appointment since. I will take a cab or a bus before asking her again.

When she was my maid of honor (because she is my sister I asked her), she called me about three weeks before the wedding asking wasn't she supposed to help me with invitations or anything. I hadn't asked her to do that because I couldn't depend on her to help.

She is chronically late for everything. Nothing like showing up for Thanksgiving dinner two hours late with no good reason. And not answering the phone when I call her to ask when she will be there. Or telling me she is on the way, when she hasn't left. She does all those things to me regularly, when I bother to have contact with her now. She doesn't reply to emails, texts, and voice mails and then whines when she didn't know about something. I think she does this to a lot of people sometimes but to me all the time.

Last weekend the first night of our vacation, the five of us went out to dinner - me, my husband, my sister, and my parents. My husband and I went first got a table because they didn't take reservations and we didn't want my parents to have to stand around waiting for a table. I called my sister to see where she and my parents were. The first time I called she ignored my questions and wouldn't give me an answer. The second time she just read the names of the signs that they were going by (why that was supposed to be helpful I have no idea). The third call she again ignored my questions and wouldn't tell me where they were. I hung up.

Yesterday became the last straw because I just cant take it any more. We were on a family vacation and each of the three of us, my brother included, were paying for food and taking turns cooking each night. She had to go back to work for a couple of days and came back Wednesday night. Last night I asked her if she was going to cook dinner one night and she said something along the lines of 'she wasn't sure'. Then she pouted in her room while the rest of us were eating dinner because I got mad at her for picking on my mother all the time. My brother asked her to apologize to me for the way she acted, last night and other times. She rolled her eyes and seemed appalled that she needed to apologize at all. I was done.

I would have left last night but since I had wine with dinner I was not going to drive a car. We got up and left by 5am to avoid the worst of Boston traffic. My father talked to me and asked me not to leave because its family. I hate to disappoint anyone but she doesn't treat me like family. This morning my brother got up to say good bye. My sister also got up and asked me not to leave, after the cars were packed, and I told her she should have treated me better for the last twenty years - actually I should have said for my whole life. I don't think she really thought I would leave.

It was a difficult decision but I really do not have time in my life to put up with anyone's crap. And I don't have to worry about her reading my blog because I don't think she even knows I have a blog. The only family member who actually reads my blog is my mother and I think she hasn't been reading it as frequently.

I reread this and wonder am I wrong? Am I making a big deal out of  nothing? Is it wrong to expect cordial relations with family members? Is it wrong to expect messages not to be ignored? Is it wrong to expect some sort of punctuality at get-togethers? Is it wrong to expect respect for others?

Thursday, August 13, 2015

Please stop changing your mind!

The news: saturated fats not bad, trans fats very bad. Now they tell us. Thank you.

Does this mean all old research will eventually be turned upside down and we can eat ice cream and chocolate every day? I find this very irritating. Its just not fair to all of us who make dietary choices now and then find out later they were wrong and we could have ignored the advice.

Actually what really annoys me is that this also happens with medical advice and it turns out whatever procedure you had was completely unnecessary.

But it is the price we pay for progress sometimes. Even though it is irritating.

Wednesday, August 12, 2015

Further addition to the cancer hall of shame

These stories just irk the crap out of me - people faking cancer to get money or sympathy. The latest is a now-former beauty queen from Pennsylvania who told everyone she had CLL (chronic lymphocytic leukemia) in 2013. But the police didn't buy it. She couldn't remember her doctor's name. Nor did she lose her hair. Now she spent the night in jail and is facing felony charges.

Nothing less than what she deserved as far as I am concerned. Fines and more jail would help as well.

I really do not understand this. People who fake diseases for sympathy? They remind me of the fakers who stand at traffic lights with poorly written signs claiming they are vets with disabilities or homeless (even though they look  nicely showered and clean), etc, begging for handouts, then ending their days in a brand new car driving home to their fancy house. There are people who do this and really are poor or disabled but their credibility has been destroyed by the fakers.

How unfortunate that some people play on the trust of others to use them. Wait that sounds like politics. Or big business. Did I say that?

Tuesday, August 11, 2015

Forcing business accountability

There is a new bill in Massachusetts which would require pharmaceutical manufacturers to disclose their costs in order to justify high prices on new medications. Hmmmm.... Do you think it would fly? I hope it would.

"An alliance of lawmakers, consumers, and health insurers is pushing for a law that would force biotechnology and pharmaceutical companies to justify their prices by disclosing how much they spend on research, production, and marketing. It also would allow the state’s Health Policy Commission to limit the prices of especially costly drugs, something not done anywhere in the country...."

"The bill cites “substantial public interest” in what goes into the prices of such medicines. Drug makers would be required to disclose, among other things, their development and marketing outlays, how much research was paid for with public funds, their manufacturing costs, and the prices of their drugs in other countries. It would also empower the commission, which is charged with holding down health care costs, to impose cost controls on some high-priced drugs."

Of course the pharma companies are not too happy about this. They claim it would reduce innovation. Okay, I get it. They don't want anyone snooping into their finances. But as far as I am concerned, if they get public funding, they need to be open about their pricing and use of the money.

If they choose not to get public funding, which they all do, then as far as I am concerned, there would need to be a bit more justification for the prices.

For decades, pharma manufacturers have been able to set their prices and the US has not negotiated with them, leaving Americans pinched by high prices. In recent years, new medications have cost tens or hundreds of thousands each year per patient for rare cancers or other ailments.

Someone has to create an onus for the manufacturers to justify their prices instead of just allowing them to ask for what they want. They try to justify it by saying their costs are high and hardly anyone pays the full prices because of insurance coverage or discounts from the manufacturers. That just isn't enough. They need to provide some kind of back up for their requests.

Okay, that's just my 2 cents, as usual.

Monday, August 10, 2015

A big step back in the flabbiness fight

Unfortunately I had a big step back in the flabbiness fight. I really did some damage to my knee (and forgot to blog about it) when I was only trying to water the plants in the back yard and fell when (or because) my knee bent sideways. I didn't break anything but I am now the (not so) proud owner of a lovely knee brace to prevent further sideways movement.

The knee doctor gave me the lovely brace and sent me for PT and said come back in two months and we will see what's going on then. On the good side, I can do my PT at the gym for dilapidated people where I go and not have to bombard my schedule with three times a week appointments for PT. I can go once and get my exercises and then do them when I want, there or at home.. On the bad side, if I don't wear my brace, my knee keeps giving out and I have to wait until I could get an appointment with a physical therapist at the gym.

I will go for my first PT appointment shortly and hope to be able to get back to some exercising. I haven't been exercising and am very concerned about the flabbiness fight. I can't just go for a walk these days. I haven't dared to go to the gym until I saw the knee doctor. And now after speaking with the gym about my knee, their advice was to wait until I see their physical therapist and set up knee exercises before trying too much.

So I am sitting around on my ass too often. I am also closely watching my food consumption to prevent further flabbification. And my knee gives out way too often if I am not wearing the (stupid) knee brace (will I get tan lines from it?) so that I got a second smaller knee brace to wear in bed.

Okay its not cancer, but its a royal pain in the ass. Do I get some sympathy? I can just start whining?

Sunday, August 9, 2015

Fighting fatigue

These days I go through life fighting fatigue. I never seem to get caught up on my sleep. I prefer not to nap too often so that I can sleep all night. And I have prescription sleep aids to help me sleep through the night - which makes a huge difference.

Every day it seems I get to a point where my body is saying 'sleep' and my mind is saying "don't, you are driving a car" or "You are at work"... You see the problem.

Last night we went out to dinner and then I needed to sleep. Earlier in the day, I fought off fatigue while driving (and didn't fall asleep). A cup of coffee doesn't always help me with the fatigue and I really do not want to drink coffee all day because then I will never sleep at night. But if I am at work, I have resorted to coffee.

Right now I am doing okay. I got about 11.5 hours of sleep and am drinking coffee. But I may nap later.

Saturday, August 8, 2015

More wonderful medical news

Of course, I get all the fun stuff. I have both rheumatoid arthritis and fibromyalgia. It never ceases to amaze me that some people do not know what either are. Yes, Virginia there are disgustingly healthy people out there who do not know about yucky unhealthy stuff.

So it overjoys me to read new research about my ailments. Especially when I find research that says the really lucky people who have both RA and fibro, have many more problems with RA than people without fibro.

One article is titled: Fibromyalgia Symptoms May Mimic High Disease Activity in Patients With Rheumatoid Arthritis. That title sort of says it all doesn't it? So even if I don't really have high disease activity, I will just feel like I do.

This article is from Egypt and is titled: The Impact of fibromyalgia on disease assessment in rheumatoid arthritis. I has some lovely charts and tables that compile the list of issues.
Table 2. Somatic manifestations of studied rheumatoid arthritis patients.
Somatic manifestations percentage (%)Patients

P value

RAF (25)RA (25)
Widespread pain10028less than 0.001
Sleep disturbance68320.011
Fatigue92520.002
Morning stiffness56360.156
Headache56240.021
Depression8840less than 0.001
Anxiety7240less than 0.001
Parasthesia76320.002
Cognitive symptoms56160.003
Dysmenorrhea20201
Irritable bowel syndrome1640.157
RAF: rheumatoid arthritis with concomitant fibromyalgia, RA: rheumatoid arthritis.

When I was diagnosed with both RA and fibro, my doctor told me I probably would not be able to tell which ailment caused which pain. Sometimes I can but sometimes I can't. And sometimes I just don't care.

But now that I know fibro makes my RA feel worse, I'm not going to suck it up. I think I should switch to chronic whininess. I think chronic whininess outweighs chronic pain. Some research news inspires whininess.

Friday, August 7, 2015

Shorter radiation is better

Sometimes editing takes out all the important information. This took  a lot of digging to find out what the hell it was talking about.

I first came across this article which says higher dose shorter radiation is better that the traditional radiation given to breast cancer patients. This makes sense because the damage from radiation is cumulative meaning that it gets worse and worse after each treatment. Other side effects such as fatigue are also lessened from the shorter course of treatment.

Well that is nice to know but how much shorter is it? I couldn't tell but did go find the referenced article, Differences in the Acute Toxic Effects of Breast Radiotherapy by Fractionation Schedule: Comparative Analysis of Physician-Assessed and Patient-Reported Outcomes in a Large Multicenter Cohort, on JAMA Oncology. You got that?

How's this instead?

"Randomized trials have established that hypofractionated regimens of radiotherapy to the whole breast can provide long-term disease control that is equivalent to the excellent outcomes of more protracted conventional fractionation schedules in selected patients undergoing lumpectomy for breast cancer. Hypofractionation might also result in lower rates of late toxic effects than conventional fractionation. Although the American Society for Radiation Oncology has issued consensus guidelines to identify patients in whom hypofractionation is appropriate and endorsed consideration of hypofractionation in its Choosing Wisely campaign, uptake of hypofractionated regimens has demonstrated considerable variability worldwide and has been relatively slow within the United States."

Okay, what if I tell you this:

"Traditionally, women undergoing lumpectomy for breast cancer were treated with 5-6 weeks of daily radiation after surgery. "Hypofractionated" regimens are shorter courses of radiation, in which a slightly larger dose of radiation is given per day, allowing radiation to be delivered in a shorter period of time, most commonly in 3-4 weeks."

Finally, I get to the truth and find that 2 weeks less, slightly higher dose radiation offers fewer side effects? Why couldn't they say that first?

Thursday, August 6, 2015

I have a bad case of 'Icouldntcareless'

I have a new ailment and it is  a close relative to 'Apathy' and 'Screwitall', and its called 'Icoudntcareless'. Its symptoms border on fatigue and ennui and require lots of time with your feet up to recover from recent stresses.

Sometimes you get too much thrown at you to deal with and the best treatment is to ignore it all. That' s what I'm doing. The other day I blogged about blocking out life. I am continuing in that mode and taking things a step further.

My schedule for the next few days has lots of things on it but I am not going to do anything I don't have to. I finally caught up on some much needed sleep, I think. But I might need to get another 10 hours tonight (seriously). The knee doctor gave me a fancy new brace and wants me to try PT and then come back in 6-8 weeks. The good thing is I can do PT at my gym instead of going to a separate place with lots more appointments.

The fibromyalgia support group was okay, not great. It has potential but there is one woman in it who wants to be the center of attention and dominates all conversations. The other woman who attended did not speak unless directly addressed. A nice combination. I will try it a few more times and then decide but am leaning against it. I need to get over my current 'Icouldntcareless' before making any decisions.

Maybe I am turning into a cynic or something.

Wednesday, August 5, 2015

A Cancer Diagnosis is More Important

Today's Ask Amy column upset me and made me think. You can read it below or here as published in the Boston Globe.
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Q. My sister (in her early 40s) was diagnosed with cancer. They caught it early, so it’s still at an early stage. We in the family all found out about this a few weeks ago.
I have messaged her and her husband a few times since then to chitchat, but never asked them about the cancer.
I feel like if they want to talk about it or need my help, I will be there. It is understood by everyone in my family that we will help each other if asked.
My sister and I haven’t spoken for a week, and I found out from my other sister that my brother-in-law called me rude and not supportive because I didn’t offer to help.
I have two young children, and the younger one was constantly sick. I also work full time and am dealing with a dying father-in-law.
I don’t have the memory capacity or time to follow up on them all the time. Was I being rude? Hurt
A. You were being rude, and you ARE being rude.
Even if yours is a family that considers illness to be a private matter — your sister has cancer. It is incomprehensible that you would learn of this, initiate contact with your sister to “chitchat,” and then never mention it.
Your sister and her husband also did not bring it up, but they knew you had an awareness of their situation and were no doubt expecting you to at least inquire.
You say you can’t be supportive because your sister’s cancer is trumped by other family issues. This is even more baffling, because if you have experience dealing with illness, surely you realize that the comfort doesn’t come from offers of “help,” but from having people at least acknowledge the challenging situation illness presents.
In the course of your messaging, what does it cost you to type: “Oh, Sis, I heard about your cancer. Thank goodness it was caught early. I’m thinking of you. . .”?
All of your reasons for not doing this come off as justifications after the fact. You should apologize and offer some sisterly support.
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I agree with Amy here. If someone is diagnosed with cancer, it should be recognized by family members. I have had too many people run for the hills at the word cancer. I never wanted to be buried in phone calls about my medical issues but it is nice if family members recognize it.

Obviously the letter writer is a bit self centered and she has a bit too much going on in her life to think of anyone else. But seriously? Your sister had cancer and you blew it off.

Tuesday, August 4, 2015

This is just too perky for me

My gag reflex is kicking in. This woman has metastatic breast cancer and is successfully being treated by Ibrance according to her perky oncologist. It isn't news, it feels like an Ibrance commercial.


I have the urge to barf. I'm sorry but its true. And yes its that really expensive new treatment.

And my inner marketing person says this kind of news article is really a type of advertising. I am not saying that anyone in the video did anything wrong. But marketing comes in all forms. And Pfizer is making big bucks on Ibrance.
You can read that article here. Okay, my inner witchy cynic is showing this morning. Maybe I need a nap or something.

Monday, August 3, 2015

Blocking out life

Sometimes I feel I need to ignore life and the rest of the world and focus on my ever growing list of ailments. Its not that I want to, its that sometimes my body insists on being the focus. Like the past few days. And probably the next few days.

I have many other things I would like to do but I have to focus on my health. I will fit in other 'stuff' around my health crap. And it really is crap right now.

I have a feeling I did some damage to my knee, how much I will learn more on Wednesday. It hasn't been contributing basic things like flexibility and stability to the rest of my body for the past few days. This means I can't go to the gym. Actually I don't dare go to the gym. But I really want to go. I think exercise will help me deal with stress. And I have blood work this week as well as two other doctor appointments. Right now I am getting blood work done every two weeks.

I also broke down and succumbed to pressure from my new therapist to try the new fibromyalgia support group. I did point out that I do have multiple ailments and fibromyalgia is one of the less challenging ones to me at this point. I mean its there. It causes me pain, fatigue, and, my favorite, insomnia. It isn't progressively causing damage to my body or lurking in the background, threatening to recur like some of the others.

I was told that the fibromyalgia group should help provide 'coping' strategies. I agreed to go once to see if these 'coping' strategies are really covered and potentially show any benefit for me. But my cynical self doubts that.

I am just stressed, anxious, in pain, tired, and a few other things so life isn't as much fun right now. Call me a cranky cynic right now.

Sunday, August 2, 2015

MAINT REQ'D

Yesterday I went to a mini college reunion about 1 1/2 hours away. My husband was supposed to come with me but woke up not feeling well so I went by myself. I do not usually travel much these days by myself because of my health issues and the need for naps and all that.

I drove our 1.5 year old Corolla and took the scenic route because there was a 10 mile back up on the interstate. I ended up driving home, leaving around 830pm. It took about 1/2 an hour to get back to the highway. Once I get on the highway, the road was finally empty and it should have been a quick hour home. I hit the left lane as usual and was able to go a consistent 70 or so, also as usual.

Then this shows up on the dashboard:


I did not have a good feeling. I instantly tried to call my normally-helpful-former-mechanic-turned-mechanical-engineer brother who had the nerve not to answer his phone. Where was he ignoring my calls when I needed him? Then I tried to call, and woke up, my husband for advice. I pulled off at the next exit and there was a Dunkin Donuts right there that was still open. I pulled into their parking lot as I spoke with my husband. He was telling me to check the oil, look at the temperature, and otherwise open the hood and look at the stuff there like I knew what was going on. (I knew it would be dirty and full of strange things.)

My question was why would a nicely running car which was relatively new all of a sudden have a little warning light? Especially 60 miles from home, by myself, at night? My first thought was not to open the hood but instead to open the owners manual. There I find the answer to my stress - basically it was due for service. As it didn't say MAINT REQ'D SOON I was off the hook.

My husband was happy to go back to sleep. I was happy to get back on the road. But I really could have skipped that little episode. I have enough stress in my life without car issues too. Thanks.

Saturday, August 1, 2015

Another 'Upside' to Breast Cancer Treatment

Its not enough that breast cancer treatment consists of slashing, poisoning and burning. These leave a physical and emotional toll that can include additional ailments, including new cancers. One of them is nice rare one without much available research and a high mortality rate - angiosarcoma. Please read and enjoy the following:

"Physicians have long noticed that breast cancer patients who have had surgery or radiation therapy have an heightened risk of developing angiosarcoma, a rare type of cancer that originates in the lining of the blood vessels.

Now, researchers at Loyola University Health System in Maywood, Ill., have focused in on a finding that could be a possible precursor to angiosarcoma. With further research this finding could lead to more definitive markers that could predict those who are most likely to develop the disease. Angiosarcoma is a malignant, rapidly growing, highly invasive type of cancer that has a high mortality rate.

In a case study published in the Journal of the American Academy of Dermatology, researchers at Loyola identified what at first appeared to be only a tiny bruise on the right breast of a 63-year-old woman. Four years prior the woman had had a lumpectomy in the breast and radiation therapy for cancer. She had also had chemotherapy and hormone therapy. 

“Normally, when you see a benign-appearing vascular lesion, you probably would pass it up,” said Dr. Joshua Mandrell, a dermatologist who co-authored the report. “But given her history, we biopsied it and it did show that it was an atypical vascular lesion.”

Atypical vascular lesions are abnormal vascular growths that are thought to form in response to trauma, such as that caused by surgery and radiation therapy, according to the study. The lesions are so rare that few medical professionals are aware of their existence. There are also no well defined prognosis factors or treatment guidelines for them.

“Atypical vascular lesions are not completely benign blood vessel growths and are not angiosarcoma. They are right in the middle. They are atypical enough that we suggest in our study that they warrant treatment,” Mandrell said. “The thought is that they could potentially become angiosarcomas.”

How lovely is that? When I searched on cancer.org's website for angiosarcoma, this is what I found:

"This form of cancer starts in cells that line blood vessels or lymph vessels. It rarely occurs in the breasts. When it does, it usually develops as a complication of previous radiation treatments. This is an extremely rare complication of breast radiation therapy that can develop about 5 to 10 years after radiation. Angiosarcoma can also occur in the arms of women who develop lymphedema as a result of lymph node surgery or radiation therapy to treat breast cancer. (For information on lymphedema, see the section "How is breast cancer treated?") These cancers tend to grow and spread quickly. Treatment is generally the same as for other sarcomas. See Sarcoma: Adult Soft Tissue Cancer."

That was all that was listed. And when I went to the link for sarcoma, it was not even mentioned. Nice.

I can't wait. I had radiation and have lymphedema. I'll just add this to my list of crap to look out for. And if its related to cancer, it is all crap.