Friday, May 31, 2013

I hate these stories

I hate these stories about the tragedy befalling someone because of missed medical tests. They are 'tragic' and the media picks them up and tells us about the tragedy and this poor person is going to die.

This is one about a woman in England who had breast cancer and now has brain tumors and was told that she has weeks to live. The media tries to blame this one on the health care system. I'm sorry and its a tragic story but still the patient should have done more on her part as well.

If you go to the doctor and they tell you its whatever - arthritis - and gives you medication. You take the medication and it doesn't work, you need to go back to the doctor and say this isn't working and demand more care. If its still a problem keep going back to the doctor until you are feeling better. If you still are refused care, find another doctor. You can't sit there and let them tell you its nothing if its something that gets worse.

I'm such a patient patient, I would be hanging out in my doctor's waiting room and getting more opinions to find out what is wrong.

Being a patient is a two way street. If you go to the doctor, you need to listen to their instructions and avoid them at your peril. If you follow their instructions, you should expect to feel better in the long run. On the other hand if you go to the doctor and follow their instructions and don't get better or achieve the expected results, speak up and demand more. Don't sit back in pain or discomfort and let them tell you its nothing.

Thursday, May 30, 2013

The big pink wall

Whoop-de-doo, Ford Motors just announced its Warriors in Pink 2013 program. Now you must get excited. You can buy pink appaarel from their program and a portion of the sale of each garment, $5-$20, goes to one of four charities and you get to choose which. Komen, Young Survivors Coalition. Dr Susan Love Research Foundation or the Pink Fund. Isn't this just so great. You get to buy pink gear, I must need some more! I'll check my closet and get on line now.

This is just like Pinktober again isn't it? While I admire the Ford Motor company for thinking right, they could have done it without the pink.

A recent study points out that metastatic breast cancer patients often feel disenfranchised with the pretty pink ribbon ideology. The pink mentality is positive and shows all these happy women, dressed from head to toe in pink, saying pink, pink, pink. They form little clans for each woman with breast cancer and applaud each year out from treatment or each anniversary of their passing.

I think when breast cancer is happy - they are in treatment, they are so brave when they shaved their head, their surgery went well - its all pink and pretty.

But when the diagnosis and prognosis are not so good, the big pink wall goes up to protect the pink dressed supporters from the bad news. Its not as pretty picture any more. The pink people don't want to hang out with someone who isn't rah rah breast cancer any more. They want to move on to someone who is happy and smiling.

The study did also say that 45% of the metastatic patients developed their own circle to share information to help others. But still the metastatic patient loses the original support they had when they need it most. Support does not have to be pink but just needs to be.

Wednesday, May 29, 2013

More on the breast cancer treatment gap

A few weeks ago I blogged about the breast cancer treatment gap where women who are told they are BRCA positive only have surgical options to lower their risk of breast or ovarian cancer. It turns out this is growing in significance because of genetic testing progress.

This started when Angelina Jolie announced she had a prophylactic bilateral mastectomy because she was BRCA positive. Unless you have been living under a rock you couldn't have missed that story in the news recently.

While many people are supportive of her decision, some are not. Here is an article on the other side of the issue - which shows how some people are not in favor of this type of prophylactic surgery. I think this kind of decision is very personal but unfortunately there are not a lot of options for those with who test for the genetic mutation.

We can also add in the fact that insurers often are reluctant to pay for the tests. Not just the BRCA test but others for Cowden's syndrome or Li-Fraumeni syndrome, both of which are shown to raise risk for breast and other cancers.

Finally, let's top this all off with the fact that University of Alberta researchers have pinpointed markers for sporadic cases of breast cancer - meaning ones without a family history. Or about 80% of all breast cancers could be caused by these markers. They suggest that women with the marker could then proceed with prophylatic options. We know what that means.

So let's add it up:

  • Researchers are finding genetic causes to more cancers.
  • Insurers don't want to pay for genetic tests.
  • The only options for women with the genetic mutations or markers are significant disfiguring surgery with long term complications.

So where does that leave the patients? Over the barrel without a lot of options.

Tuesday, May 28, 2013

A long weekend

We were supposed to go camping this weekend but didn't due to the weather so we had an unexpected few days at home. If anyone cares to think we are wimps I would like to state that it was snowing about five miles from the campground we were going to on Saturday.

We didn't go outside much because it has been cold, rainy, and raw but did make it into Boston to go the museum on Saturday. Sunday we cleaned out the basement some more - there is always more on that project. Yesterday we finally were able to grill outside. And my husband mowed the lawn.

One thing I have enjoyed is that I finally got caught up on my rest. Not just sleep but rest. During the week when I  have to get up three days in a row (which you may think is an easy week), I am struggling by the third day and really need more rest.

I could have gone off for the whole day yesterday and done fun things but am concerned that I will not make it through the next three days of work if I did. I needed another easy day at home. My plan was early dinner on the grill outside and then early to bed. That part worked. Then I woke up at 10, 1130, 2, 330 and 430 so I don't feel very rested. Today I will work and go to the gym after a bone density test and then I will go to bed early. I need the rest.

The cat is very miffed that his breakfast has been late for four days in a row. I'm not.

Monday, May 27, 2013

I am not blog worthy today

But in case anyone thought I might have dropped off the face of the earth or something, I thought I would say hi.

Sunday, May 26, 2013

Komen disparities again

Of course, Nancy Brinker, founder and president of the Komen Foundation for the Cure (because they trade marked 'for the cure') had to grab onto the Angelina Jolie announcement. She latched onto the disparities of availability of the BRCA test and affordability of breast cancer treatment for lower income women.

Why doesn't this surprise me?

Anyway I digress. She was very proud to announce that Komen has donated a whopping $34 million dollars for BRCA research since their start, out of the total $755 million research investment.

$34 million is peanuts for them.

In their fiscal 2012, Komen raised $342 million. In one year. So if you do a little math, their total BRCA research investment is 1/10th of their total annual revenues. It only took them 30 years to reach that number (they started in 1982). What they have donated to research over 30 years, would take them just over 2 years to reach at their current revenues.

So Komen doesn't really fund research. They fund community programs and also spend a lot of money on pinkification. I guess if you don't think they fund research this is okay. I think we all thought they funded research.

Why do I blog about Komen? Because they just irritate me so much. They are a really good example of a poorly run organization which has problems with putting their foot in their mouth regularly and they might have just done it again.

All Ms. Brinker's post did for me was highlight more discrepancies in what they do vs what we all thought they did.

If you want to help fund cancer research do not donate to Komen, send your money elsewhere.

Saturday, May 25, 2013

What would you pay?

Would you pay $4000 for something that is only should cost $99? Apparently women who get a BRCA test pay nearly $4000 for something that should cost around $99. This because of the monopoly Myriad Therapeutics has by patenting the genes. I know I have logged about this before so may you call me redundant.

We are still waiting for the Supreme Court's response to the argument that gene's can't be patented. But Myriad is so sure that there will not be a problem for them, they are planning further profits later this year.

"Without competition, Myriad can effectively charge whatever it wants. Later this year, the company said it would begin incorporating the BRCA test into a 25-gene cancer-risk evaluation and phase out the à la carte BRCA test by 2015. For that broader test, it projects a gross profit margin of 87 percent."

I wouldn't mind an 87% profit on my investments. Would you? I'm just awaiting the Supreme Court''s response.

Friday, May 24, 2013

Living with pain

Every day my morning starts with 'ouch', 'ow', 'owie', and more. And my husband looks at me and says are  you sure you are are okay for whatever my day is planned. I say yes and suck it up. And maybe take a pain pill.

Yes, that's my life. I don't ask for pity. I cope. I take steps to work on my pain.

I have upped my arthritis medication and go back to my rheumatologist in July. I also have a 'procedure' (which involves sedation and lots of needles) on at the end of June which will alleviate a lot of back pain. I see my primary care (well her nurse practitioner becuase she will be on maternity leave) also in June where I will talk about my hand pain from the stupid (untreatable) ganglion cyst and my knees' general lack of cooperation with my desire to live a pain free life.

All those fancy pain medications you see advertised won't help me much. I have already tried the fancy ones for fibromyalgia and they haven't done much for me. And the other fancy medications, the biologics, for rheumatoid I can't take because of my cancer history, blah, blah, blah.

I am being honest here. I usually am honest in my blog but sometimes I elusively play with the truth and am not as open about some topics. What I do is I withhold the truth until I want to talk about things.

I mean living with pain is not like living with cancer or anything but it does kind of suck in a way. I do get all the good drugs.

But as I said before I am not asking for pity. And if I anyone says 'I'm sorry' to me about this post, I'll be sure to smack you silly next time I see you.

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.

Wednesday, May 8, 2013

The post cancer life

Life after a cancer diagnosis is never the same as before. They (this is the proverbial them) tell you that you will reach a new normal - whatever that is.

Some people turn their diagnosis into a turning point in their life where they start eating organic food, take better care of themselves, and appreciate the little things in life.

I can say that while I used to exercise regularly. Now I even belong to a gym - it maybe one for dilapidated people - but I even go to it three times a week. And attempt to go for a walk one time a week. I am pretty sure I reach the minimum suggested exercise requirements. I am also attempting personal deflabbification but that seems to have worked not quite as well - I'm going to have to have a conversation with the bathroom scale sooner or later.

I did find an article recently that a study was done (because we need another study) that only 10% of women post breast cancer treatment are getting enough exercise. This is compared to 39% prior to cancer diagnosis and treatment. Doesn't this sound kind of backwards?



There are many average people you hear about that after cancer they turned their life around and got in shape for the first time. But evidently its not as many as we might think. Do the women take their cancer diagnosis as a reason to give up? It should be just the opposite.

I'm not perfect by any stretch but I do exercise.

Tuesday, May 7, 2013

Avoidance mode

Yesterday at work was the monthly sales meeting day which means it was chaotic from time to time. I was feeling relatively antisocial for some reason. I couldn't decide why. Then I realized its because of my stupid medical appointments tomorrow which are putting me in avoidance mode.

Nothing like one bad mammogram to make you dread them for the rest of your life. But that is tomorrow. This is today. I will go to work today and then the gym and continue to avoid it all day and all of tomorrow as well.

Stressed? Not me. Ha!

Monday, May 6, 2013

Monday morning and I need a nap

Last night I went to bed pretty early to get ready for a Monday where I actually have to go to work. I did wake up around 330 and wasn't sure I would get back to sleep. Then I was informed by my husband that I slept through the alarm and the snooze alarm. I guess I was tired. I need a nap.

But its not to be. I will go to work and then meet a friend for a walk (I hope). I'll go to bed  early tonight to make up for it.

I have been a big fan of four day weekends recently and find I barely make it through a 3 day work /18 hour work week. Today I have to go to work because of my doctor appointments on Wednesday and I have plans for Friday. If I have to change my work schedule, I usually opt for the Friday option instead of the Monday option.

There will be a sales meeting at work today which means the people who work remotely will be in so it will be a bit chaotic. However it does guarantee I can get take out for lunch. Nothing we have at home appeals to me right now.

My husband selected turkey baloney for his lunch choice this week. I think it is slimy and disgusting. His rationale is that he has had turkey just about everything else so what is wrong with baloney? Ick. Its all his, I don't believe I'll be sharing any of that with him.

But I think I am done procrastinating and need to hit the road. After I brush my teeth.See? I can procrastinate with the best of them.

Sunday, May 5, 2013

On being cynical or jaded...

Yesterday I thought my blog post was a bit cynical. Someone on Facebook said it was a bit jaded maybe but understandable.

My health keeps giving me hits - if its not one thing, its another. I spend more time rearranging my life for doctor appointments and at those appointments than anything else. By the end of this week, I will have had 18 medical appointments in the first 19 weeks of the year. I am down to an expected rate of about 50 doctor appointments for the year. This is the lowest since 2006.

My therapist (of course I need a therapist with all these medical issues) tells me I am in chronic mourning for my health because something else always seems to want to cause problems. (Yesterday my knee started popping when I walked up and down stairs but I am going to ignore that one for at least a month.)

I don't think I deserve any special treatment because of my ailments. I do struggle with writing a blog about breast cancer when its not really much about breast cancer right now. But I do have my annual mammogram along with some other 'fun' tests this week (which I am ignoring for now because that is all my inner child can handle). I'll fill you in on the details sometime in the future.

My cynicism on my health comes out as I am as healthy as a horse on the way to the glue factory. I work with a bunch of people who have no idea of any health ailments that I have had longer than the four years I have worked there. But they still think I am the least healthy employee.

I just got an email from RealAge.com telling me I should think myself young. Yeah right.

Saturday, May 4, 2013

What is so 'feel good' about cancer?

I'm working on this one. I haven't come up with much. There was a recent article in the New York Times about our feel good, pinkification war on breast cancer that has never done much for me.

There is also that year 2020 breast cancer deadline which I find just stupid. Seriously in 7 years there will be a cure? We have come a fair distance in the past seven years but that doesn't seem to have us in a position to be done in the next 7. Some pretty little blue bird of happiness will have to drop something off unexpectedly that will do the trick, get through FDA testing and all that, and then drug companies will still gouge the patients for a $10,000 a year for the medication (because of all the research they had to do).

I saw a video recently about cancer researchers dancing - even in bowties - because of how happy their research makes them.


















There was an article in the local paper on a local woman who was a cancer researcher and how she felt about contributing to solving cancer.

I am glad they all like their jobs but it doesn't do much for me in the end. Maybe I'm cynical or maybe I'm just tired and cranky.

Friday, May 3, 2013

The Best New Doctor Reaction Yet

He laughed.

I went to see a physicians assistant in the rheumatology department yesterday about the bump on my arm (not on a log). He was a very nice man and spent some time talking to me.

He said what I have is probably a ganglion cyst and he could stick a needle in it and drain it but it might come back. I said lymphedema arm. He said 'oops, no needle'. I said when I move my thumb around it makes it hurt more, he said I could give you a thumb splint but that would make your arm swell up.

So we left it that I will monitor admire it, and if it does become problematic, I would be referred to a surgeon to see if there was anything else that could be done. On the other hand, sometimes they go away on their own, or disappear and then reappear. But its not arthritis and its not cancer so what they hell, I can stick with it.

Then he asked me how I was doing with the RA. I told him about being allergic to both plaquenil and prednisone. Prednisone is often given to RA patients to give the other treatments a boost to get them started or during a flare to help get it under control. Not for me.

I also said that I can't take the organics like Humira, Enbrel, etc because of my cancer history. And I'm allergic to benadryl and the cillins as well.

He laughed and said 'oh you are a great patient to treat!'. I have multiple ailments, can't take many regular treatments, and have allergies that pop up all the time.

Yes I could see the humor in it. But at least I didn't have to scrape a new doctor off the floor for once upon hearing all my medical history..

Thursday, May 2, 2013

How we cope

I have always said that unless you have walked the walk, you can't talk the talk. If you haven't had cancer, you have no idea what it is like - you can't shouldn't even pretend to get it. But those of us who have been there know.

So that opens us up to all the emotions of the cancer diagnosis and treatment process again and again as we hear stories about others.

A friend called me yesterday because a friend of hers who just gave birth to a new baby two weeks ago, was just diagnosed at stage IV for a recurrence of a rare childhood cancer. There aren't a lot of treatment options - either chemo or surgery - available for her. She doesn't have a full diagnosis/prognosis yet but it doesn't look good. Its a very sad story that she  will probably not be around to raise her child.

So those of  us who have walked the walk have a good sense of what the treatment will be like. It won't be fun. It doesn't sound like it will have a good outcome either.

But those of us who have walked the walk at every story we hear our emotions take over again and open up and send us down that road again. Now that we have learned to cope with our cancer story, we then need to learn to cope with someone else's story again. Its an ongoing process.

My therapist tells me I am in a chronic state of mourning because of my continually downward spiraling health issues. But as I pointed out to my friend yesterday its like with each story we hear, we need to go through the five stages of coping/grieving/mourning again.

Is it easier each time we go through this? Not really. I think we just adapt our coping mechanisms a little more.

Wednesday, May 1, 2013

Now its my back

Lets return to the 'if its not one thing, its another' category. My back is being very bad lately. When I say bad it is causing me pain of the kind that makes it difficult to remain vertical for any length of time. That makes it hard for me to do things like walking around, cooking meals, cleaning, emptying the dishwasher, going to the grocery store, going to work, and feeding the cat among others. Nothing much. It also tends to hurt when I am sitting or lying down.

What can I do that does not cause me pain. I'm thinking. I'll get back to you when I come up with something.

I think what has happened is that the last treatment to my back has worn off. I have had these fun treatments where they basically stick heated needles in my back between the bones and kill off the irritated nerves which are causing pain. They are irritated because they are being squished as a result of my degenerating disks.

The treatments work for at least a year or so and can be repeated. Even though the nerves are killed off they do grow back but usually less so they cause less pain.

The problem is I am not scheduled to see my doctor until the end of May. I can try to get an appointment sooner but his schedule is usually very tight. Then I will have to wait to get the treatment scheduled which can take another 4-6 weeks.

I'm still thinking of something I can do without pain.