Day Two of Pajama Girl

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

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

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

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

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

Today you can call me 'Pajama Girl'

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

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

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

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

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

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

About them bones...

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

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

You would think I had this under control

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

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

But the rest of them, forget it.

Here are the complicated ones:

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

I have on of those daily pill boxes and use it. What I think I need is a separate pill box to split up the ones I need to take throughout the day. Damn. I have to do something. I do not have it under control and am not willing to lie to my doctors about it. They can get very pushy which they should.

Helping your cause or not

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

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

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

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

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

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

Blood tests for breast cancer?

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

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

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

Another Article I Obviously Missed

How to Fight Off Cancer:

1. Eat right
2. Exercise
3. Manage Stress
4. Get Enough Sleep

Can I just say better late than never?

Or, can I have a do-over?

Or, I'll get right on that?

Prescription Dollars Wasted By 913 Doctors

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

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

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

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

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

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

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

Best cancer blogs nominations

Healthline

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

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

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

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

So please think of me, but vote for Ann

I made it

The past six weeks of my life have been indescribably stressful and fatiguing for numerous reasons. All I needed to do was get to November 21 (which is today you will note) and I can relax and life will go back to its normal pace. The reasons for my stress were:

1. Both my parents had health issues - the exact issues are their stories to tell, not mine but I will say they both have a long road ahead of them but they should be fine in the end.
2. I had three craft fairs recently which took entire days out of my weekends and made me want to crawl back into bed for a week after each.
3. I have had a few minor medical issues to deal with but they are dealt wit. Its just the time that it took to deal with them.
4. I volunteered for a six week research project which helps with breast cancer research as part of the DOD research programs. It was enlightening, optimistic, and enjoyable. But it was a lot of work and ended up with the past three days spent in a hotel outside Dulles airport in meetings discussing things. 
5. I can't remember the rest but there was a lot going on my life.

Sadly I must say that an old friend of mine was strangled by her husband this week and her two babies were killed as well by her husband who then took his own life. It was a very sad occurrence that requires a certain amount of mourning to cope.

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

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

Cancer staging - take two

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

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

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

Things I have learned:

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

Now six  years out, we don't ask other 'what stage are you?'. We ask each other 'do you want to meet for coffee?'. We talk about life, shopping, holidays, work, stupid people, bad drivers, the latest news, the idiots in Washington, planning fun events, issues with relatives.... You know the things normal people talk about.

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

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

I'm still me.

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

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

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

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

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

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

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