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 week - 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 laptop 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.

 
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