Thursday, May 23, 2013

A Workout a Day Keeps The Cancer Cooties Away.

Maybe an apple a day too. When I was in treatment for breast cancer, I would go for a daily walk, every day unless hospitalized. It helped with destressing, medication side effects, and I really liked getting outside and stepping away from the doom and gloom.  No one ever told me not to walk. The nurses and doctors all thought it was great.

Since then I have had to join a gym for dilapidated people where there are physical therapists and all sorts of people to help us do things like stand on one foot without falling over. I'm not kidding. I no longer exercise every day because I can't. I need a day off between working out. But I still go to the gym three times a week and I go for a 90 minute walk once a week with a friend. Apparently I am on the right track here.

There will be an announcement at the upcoming ASCO (American Society of Clinical Oncologists) annual meeting in June about the importance of daily exercise for better cancer outcomes and reducing cancer risk. This annual meeting is always full of good news for us cancer people and I do look forward to reading what is announced.

They had a preview meeting the other day where they announced a few tidbits, one of which was the benefits of daily exercise. They call it "A Workout A Day May Keep Cancer Away" but I like my title better.

Today I will go for my walk with a friend. Tomorrow I will go to the gym. I'm all for keeping the cancer cooties away.

Wednesday, May 22, 2013

Let the patients make the decisions

I'm not sure why we continue to let insurers make decisions for us on our care. I completely understand that an insurer wants to keep an eye on expenses and want preapproval so they can count their beans. But they should not be telling us what care we can get - with in reason.

I agree insurers should not need to pay for cosmetic procedures for example. If someone wants to fix their nose, they can pay for it (through the nose). But decisions which relate to life and death care should not be theirs to make.

A new study showed that women on Medicaid are much more likely to have a mastectomy instead of a lumpectomy - 60% of those on Medicaid had a mastectomy vs. 39% of those with other insurance.

Or are the surgeons making the decision for the patient? The study also points out that surgeons are reimbursed 40% less for a lumpectomy than for a mastectomy from Medicaid. The surgeon should provide the information and the advice to the patient to make the decision but they should let the patients think for themselves, not the doctor's wallet.

The patient should make the decision - no one else.

Tuesday, May 21, 2013

Doing good hides being bad

GlaxoSmithKline has announced a partnership with Save the Children to help reduce the child mortality rates in Africa by providing drugs at cost. This sounds all very good and such. I am all for reducing child mortality rates and reduced costs for medications.

However, you should also know that GlaxoSmithKline is the manufacturer of Tykerb which is used to treat several kinds of cancer, including metastatic breast cancer for the paltry amount of $6000-$7000/month. I did find the price online for $1000/month. This is only one of their many medications.

What irks me about this supposed 'goodness' by GSK is paid for on the backs of the American patients which metastatic breast cancer as well as other cancers.

In addition, GSK was fined for market abuse in the US where it paid $3 billion (that's with a b) last year for marketing antidepressants for children for which it had not been approved. And if you read this little analysis included with the article, the rest of the rationale comes clear.

"Analysis

"Big pharma" does not have a good reputation in Africa. Memories are still scarred by the refusal of some drug companies to lower prices for HIV drugs when millions were dying across the continent.
Justin Forsyth, of Save the Children, admits that he used to picket GlaxoSmithKline over that controversy. Now, though, he thinks this particular drug giant has reformed itself under the leadership of Sir Andrew Witty.

That's why the charity has agreed to forge a partnership with GSK to formulate new drugs and train health workers in Africa.

But some critics insist it's still an unholy alliance. They argue the drug company is in need of good publicity - especially after it was fined $3bn (£1.9bn) in the US last year for promoting anti-depressants for unapproved use in children.

The partnership might also help GSK gain access to new emerging economies - which will spend much more on drugs in the coming years.

So basically they are using good to hide the bad and their self promotion for future gains. Its not so good in daylight. I'm still not a fan.

Monday, May 20, 2013

Off to play doctor

No, not like that! Get your minds out of the gutter!

I have an appointment this morning with my pain management doctor. My back has been hurting a lot recently. Having been through the medical school and now having the degree called 'Professional Patient PW' (PW=Perpetually Waiting), I am ready to tell my doctor the next steps,unless he has some wizardry that I don't know about.

My back has caused significant amounts of pain recently which immobilizes me and makes me cranky. We were going to wait six months between visits but I opted for four months and then called and moved my appointment up  by two weeks because of the pain.

My theory is that the last 'fun' procedure which involved heated needles in my spine has worn off (meaning the pesky nerves have grown back) and its time to schedule a new one. I am not sure what there is that can be done in the meantime and I know it can take up to 6 to 8 weeks to get it scheduled as well.

But I hope the appointment will go l ike this:
"How are you doing?"
"Not well, my back  hurts a lot. I think the last treatment wore off."
"Okay, lets see if we can schedule it for next week."

I know it won't be that simple. It will involve him bending me to see how much he can make my back hurt and poking and prodding. But I hope it ends up the way I want it with an appointment soon. Maybe he will even have a short term solution for the interim.

Sunday, May 19, 2013

Relay for life honor those who have had cancer

Have you ever looked at the cancer walks/rides/races and thought
  • There is no way I could raise that much money
  • I physically can't do that
  • I think all that pink stuff is just awful
  • Honestly I'm lazy and not up for that
Well there is an option for you. The American Cancer Society's Relay for Life takes place across the country in thousands of cities and towns. I don't think they have much of a minimum donation but ask that people raise about $100 (I could be wrong here but it is a small amount).

If you have had cancer, you can participate by attending and walking an honorary lap and have a delicious meal. And its free. At the very least you get to meet people in your community who are coping with the same things you are.

For anyone, you can fund raise and join a group to walk laps for twenty four hours to honor those with cancer. This is open to anyone. Boy and girl scout troops do it, high school students do it for their community service hours, church groups do it. You don't walk the entire time,  you walk when you can and then take breaks. There is food, snacks, games, prizes, and more.

I used to be involved with the local Relay For Life until my health issues made it impossible for me.

Relay for Life is the American Cancer Society's signature fundraising event. We know what they do and they do use their funds as they claim (with out pink).

To find or join your local Relay visit www.relayforlife.org. Now I am going to donate to two friends who have been participating in Relay for a long time.

[Note I am not pitching for the ACS but think that its a great thing anyone can do.]

Saturday, May 18, 2013

That other emotion with cancer

Survivor guilt often hits cancer patients later one. We are diagnosed and are hit with the why me mentality. Then as we come to accept and adapt to our cancer diagnosis, we tend to meet others who are also dealing with their cancer diagnosis. Then sometimes they are not so lucky and don't make it. Then we are faced with survivor guilt.

I can sympathize with this. I had thyroid cancer in 1981.When I returned to school shortly after that I lived in a dorm on a coed floor. That year the school had a mural painting contest on each floor. On the other side of the floor was an artistic student, in fact his father was an art professor, who painted an amazing mural. I can't remember if we won the contest or not but I do remember Andy the painter.

Within a year or so we learned Andy had an aggressive form of brain cancer and dropped out to focus on his treatment. He did show up at a party I hosted in a wheelchair once. But that was the last time I saw him. He didn't make it much longer. Why him? He was younger than me. That was when I first felt the first twinges of survivor guilt.

Later in life, I have met many more people with their own cancer diagnosis. Some are doing well, some are no longer with us. Some became very good friends as we talked about cancer and life with it. The closer I get to them, the harder it is when they don't make it. I have been to too many funerals recently.

Why don't they make it too? Cancer is treatable in many ways these days but there is still a long way to go. The guilt that I have made it twice through cancer and they did not make it through their cancer lives in the background.

This is another emotion with cancer that we must learn to cope with as we live our lives and go from doctor appointment to doctor appointment. This is also accompanied by the chronic fear that we don't want to get  moved to the category of 'the ones who don't make it'.

Friday, May 17, 2013

Price shopping for surgery

We all price shop for things. If the gas station across the street is five cents cheaper per gallon, we might go there. If one brand of milk is cheaper than the other, we will probably grab the cheaper one. Some of us coupon clip and research prices online.

We also all have some splurges. Maybe its hand bags, maybe its shoes, maybe its chocolate. These are the items that we purchase regardless of the price. Maybe its that Coach bag or the Manolo Blahnik shoes that we want no matter what. We just blindly get what we want.

So where should our surgery shopping go? If you think about it, most of us have been treating surgery in the second category as a purchase without looking at the cost. Should we be doing this? Or should we shop around and look at price first?

Two recent studies showed the range of appendectomies (done at Washington University) and hip surgery (done at University of California San Francisco). The first ranges from $1529 to 186,955 and the second $10,000 to $125,000. I'm not kidding. My first thought is that there surely must be some sort of quality variance here but if we leave that out for a moment, aren't these ranges amazing?

In any other circumstance if someone said you could get the same car for either $10,000 or $125,000 - which would you take? The $10,000 of course.

But most of us don't seem to apply this same price consciousness when it comes to medical procedures. Maybe we think insurance will cover it so it doesn't matter to me. Yes  your insurance covers it but high priced procedures are on of the many things causing continual premium increases. Or if I go to another hospital will I have to get a new doctor? Maybe a new doctor will be even nicer. You don't know until you try. Sometimes we get stuck in a rut of going for treatment to the same place.

Wouldn't it make sense to pay a little attention to the price? As part of the health care changes still coming into play medical providers will need to offer some price transparency to patients. But that is still a long way off.

Thursday, May 16, 2013

The breast cancer treatment gap

Technology is advancing along in the diagnosis and treatment of breast cancer. We now have a genetic test which allows patients to find out if they have a genetic mutation which puts them at high risk of the disease. But then we have the gap - if you have the mutation you get two options:
  • cut off healthy body parts essentialy
  • or spend the rest of your life in constant monitoring through mammograms and MRIs.

Neither of those are particularly good are they? If you have a mastectomy and an oophorectomy (ovary removal) as Angelina Jolie is, you put yourself instantly into forced menopause at a young age which causes its own set of problems. If you opt for constant monitoring, it can be expensive, stressful, and cause a huge emotional toll on your life.

We need something that breaches this gap that gives women the option to keep their body parts and not have to spend their life in constant monitoring.

Never mind that Myriad Genetics, which is the sole provider of the test because they patented the BRCA genes (until we hear about the Supreme Court ruling) and charges $3000 for each one.

While we have lots of progress, the gaps are becoming more clearly defined. Now its time to focus on the gaps.

Wednesday, May 15, 2013

Over committed again

I am over committed again these days. Combined with a lot of back pain, it is not a lot of fun. We spent the weekend away (without a cell phone and survived) but that cut in to my work time.

I am working my one job, winding down my other job but do not have enough time to get everything finished and I have deadlines. I am also starting to do a little more volunteer work, and tomorrow is an annual event where I have to be there at 6 am - but  its only ten minutes from home. I usually stay the whole day but this year they are going to be lucky to have me until lunch. Between back pain and other things I need to do, I am a little short on time and abilities.

Yesterday afternoon I spent was in a good deal of pain even though I took my pills. Silly me, I thought I could go for a walk after working for six hours.

Let's see how I do today. I bet I'll be on my way home by noon.

Tuesday, May 14, 2013

Being social can help breast cancer outcomes

So even if you feel like crap from chemo and want nothing but to sit  in a corner and stare vacantly out the window, be social. A new study (because all those researchers need to keep busy) recently found that women with breast cancer who are social - have better social and community ties - have better outcomes and handle the disease and side effects better.

What did I do at my diagnosis? I started a blog, then joined two in person support groups, joined Twitter, then cancer message boards, then Crazy Sexy Cancer, then Facebook, then so many other online communities I can no longer remember them, never mind keep up with them.

I started meeting other breast cancer people in person through my support group and other activities. I made lots of cancer friends who are now not just cancer friends.

There were many days when I was happy to sit in a corner and stare vacantly out the window but I think I did okay.

Monday, May 13, 2013

Words from an oncologist

A few months ago, an oncologist wrote a "Letter To A Young Smoker From An Oncologist". I found it very touching and meant to blog about it at the time - but chemo brain made me forget. It is a great article to share with someone who smokes and knows they shouldn't. Maybe it will help them quit.

Then the other day I found a sequel to the first letter entitled "This Is My Last Day On Earth" also written by the same oncologist, Dr. Craig Hildreth, MD. This is written from the patients point of view on dying of cancer and the issues that supported them and what they fought to the end.

The patient writes special notes to:
  • The oncologist with thanks for the compassion and caring
  • The insurnace company with outrage for refusing medicaiton
  • The nurses for their care
  • The loved ones with regrets
  • And finally to himself.

I hope there are lessons here for all.

Sunday, May 12, 2013

Komen-diculousity of course!

Today, MLB has decided to allow players to wear and use pink items to promote breast cancer awareness. I am not a big fan of sports teams wearing pink at all. But this one drives me crazy.

There are pink bats made by Louisville Slugger, and hats and gloves and pads and all sorts of things so the manly guys who play baseball can be pinkified for a day. After the day, the pink items will be raffled off with the benefits going to charity.

Not that this is bad enough but Nick Markakis of the Baltimore Orioles and Trevor Plouffe of the Minnesota Twins had special bats made by MaxBat because their mothers had breast cancer. These bats are back with a pink logo of the manufacturer. They made this special effort but can't use the bats.

The rules about this are a bit fussy

"Spokesmen for both MLB and Louisville Slugger said players are allowed to use pink bats or partially pink bats by any manufacturer on Sunday so long as that company donated to the Komen fund. There also is another stipulation.

According to an MLB-wide memo that went out to all teams on April 3, the non-Louisville bats could not include “ribbons, corporate logos, distinguishing marks or names of charities.” So Markakis’ bat, for instance, would be permissible if it did not have the MaxBat logo in pink. If the label was pink but did not include a rival company’s name, it would be fine for Sunday."


So the secret is out: Komen spun their spidery web around Major League Baseball and are getting all this money and not allowing people to do what they want. They want it all.

Ridiculous is the only word!

Saturday, May 11, 2013

Living without a phone

Due to a range of circumstances I am phoneless for the next few days. My husband is convinced I will go crazy. I am sure I will be fine.

I was an early cell phone resistor and didn't get one until the spring of 2002 when I was job hunting. I have found it useful but not required in life. I am capable of going off for a day without my phone - unless I am traveling long distance and need to be in communication with others.

I do not feel the need for instant communication that so many others do. I am happy to be by myself and not have to talk to anyone who is not with me. Or text. Or email.

It allows me to take the escape to the outdoors to the next level where not only do I not have to check my phone, no one can call, email, text or tweet with something as well. Especially no doctor can attempt to contact me either.

The way I figure it. There are always old fashioned ways of finding people. Leave messages and they get back to you. If its that important you can find another way to get through. If its really important it will be on the news.

Friday, May 10, 2013

Its been one of those weeks

I feel I have been somewhat introverted this week and pulling back a bit. I'm not sure why. I am doing okay. I have a fair amount of back pain these days and have moved up my appointment so that I can get some relief sooner as opposed to later. I have plenty of other aches and pains to boot.

I have been tired all week. I have been sleeping fairly well. But have frequently felt the need to nap. 

I did  have my annual mammogram this week which was a tiny bit stressful. Next year I will remember: If I feel something its nothing, if they find something its a problem. I felt something which turned out to be plain old body fat (of which I have plenty). But it allowed me to stress out for an hour or so.

I did purchase a new handbag last weekend for which I have received numerous compliments this week. I really like it and wanted a new purse and was just starting to look and found a Gucci bag at a yard sale for $5. I am not kidding. The previous owner bought it at Macy's and used it maybe two or three times and decided she didn't like it. Well now its mine and everyone seems to like it. So I guess that is good news.

My husband and I had an important conversation on an upcoming hotel reservation - refund for overpayment or upgrade to a suite? We opted for the suite provided it comes with a balcony. More on that later.

Today we have to clean for the cleaning lady. An arduous task but one that results in an amazingly clean house. I will suck it up with my aches and pains and take a pill and just push on through it.

Thursday, May 9, 2013

You cant tell other people how to feel

You can't tell someone else how to feel about anything, especially about a cancer diagnosis. In this morning's Ask Amy column and woman writes in about how her mother seems to be upset and feels that she is dying. The writer was treated for cancer and is currently fine. The mother is symptomatic of cancer, not yet diagnosed and thinks she is going to die, taking a woe is me attitude.

The writer is concerned that her mother's attitude is so bad and that she needs to change it.

Hello! Her mother isn't feeling well. She is symptomatic of something, may be not even cancer, but clearly not feeling well.

I think that the writer (daughter) needs to take a step back here and let her mother cope and more importantly get her to a doctor asap.

It might or might not be cancer so she is sitting in this state of limbo trying to figure out what is going on with her life. The waiting, I know personally, is awful. The daughter is trying to make her mother feel something she is not. Back off.

Share It