Attitudes are everything

Through the medical roller coaster of a cancer person's life, what is the one thing that gets you through it all? Your attitude.

That's easy to say. Some days, my attitude can seriously be slipping. for some silly reason it can be affected by those minor things like pain and distress levels.

So how am I doing? Middle of the road someplace. Exhaustion yesterday which lead me to stay home from my aunt's 80th birthday party. Annoying not-ingrown-but-still-infected toenail that has me on antibiotics and off methotrexate. And if it does not respond to the antibiotics, they will have to cut it open... Ick. And my back is killing me.

But none of this is cancer so I will stick a cheery smile on my face and suck it up while I dream up some yummy dinner that will preoccupy me this afternoon.

Disillusioned Doctors

There has been a fair amount in the news recently on disillusioned doctors and the 'tell all' books on 'life behind the scenes'. Disillusionment is being deprived on illusions. So what were they expecting?

I guess I mean to doctors go to medical school expecting to save the world? I know the medical world has changed significantly in the recent decades and the focus has changed from caring about patients to caring about insurance costs and paying the hospital administrators. But as their world adapts, the medical professionals need to adapt.

Technology has advanced and made healing patients easier. Patient care now includes concerns with hospital and insurance costs. Its a fact. It doesn't mean its right but it must be worked with and adapted to. I am the first person to decry the weight an insurance company has on choosing my medical care. And I would value change to refocus care on to what the physician wants for the patient as opposed to what insurance will cover.

But I don't want a medical professional who is disillusioned and hating the system, to bad mouth it to me and be cranky. I still want the care where the carers do care. I want the bedside manner. I want the ability to talk and ask questions. I know the staff are rushed but it can be done with a smile instead of a frown.

To correct the system will mean more change so please do not resist the change and be grumpy and disillusioned to me the patient who is in need of care.

An Amazing Video

The purpose of this video is Hannah wants to explain what its like to have cancer to her friends. She has been very brave and will make you cry.




She also wants to be famous so help share her story.

And she has a really cute outfit.

A day at the hospital

Over the past two days I have spent several hours at the hospital (not for me). Sometimes I drive other people there.

It was a bit of visiting cancerland on Wednesday as I was in the infusion area. One of the nurses asked me if it was weird to be back there and brought flashbacks. I said not really as its been long enough. And that is true. I am okay with it and it doesn't bring huge flashbacks. As long as I am not the one in the big chair with the IV in my arm.

Yesterday I was getting us tea in the cafeteria, there was a woman in front of me in line wearing a pink and white striped shirt, with a pink baseball hat over her bald head. She was clearly ready for Pinktober. And comfortable showing the world her ailment.

While waiting in the radiology department, we all got a snicker as a man walked out of the dressing room and brought his shirt and shoes to his wife. I could understand the shirt but not the shoes. Why walk in stocking feet in the hospital? Icky.

Later, in the lobby there was a woman in dressed in a hospital gown at the ATM machine with her IV pole. She was clearly a patient who went out for a walk to get some cash so she could go shopping at the gift shop. (Mental note to self, bring debit card for shopping at next inpatient stay.)

I made some small joke about taking an IV pole out for a daily walk as she went by. She replied with "they don't talk back and you can take them anywhere". Very true.

Enough hospitals for this week. I think all my appointments start next week. Crap.

VA Hospitals

The message here is do not go to a VA hospital. Especially for cancer care.
I find this appalling. We send men and women off to war and they are supposed to receive their medical care at VA hospitals around the country. What do they get? Poor and delayed care. And this results in deaths. The waits are twice what they are at other hospitals.

The saddest part of the video above is that there are probably so many more stories like this.

What is going on at the VA hospitals? Bureaucracy? Paperwork? Employees who don't care? No sense of urgency? I don't know but you won't catch me near one. Yesterday I blogged about the best hospitals, now these are some of the worst as far as I am concerned.

The Best Hospitals

US News and World Report just released its annual list of the best hospitals in the US. The hospital I go to is not in the top ten.

And I am not concerned. I mean what is the benefit of going to one of the top 10 hospitals inthe US? My bet is it comes down to two issues:

• More expensive bills
• Longer waits for appointments.

I have been told by someone who worked at one of the big name Boston hospitals that unless you are related to a senator, you can expect a long wait to get in to see a doctor. And a recent study of Boston hospitals showed that the big name hospitals offered the highest fees.

With all my medical crap, I am very comfortable with the medical care I receive at Lahey Medical Center which is ten minutes from home.And that recent study of fees in metro Boston put it near the bottom of that list.

My only complaint with the hospital is that I am there too damn often.

Good or bad, I'm not sure

I'm not sure if this is a good thing or a bad thing. There is a new program available called Smart Scheduling for doctor's offices. What it does is:

"Smart Scheduling mines patient scheduling histories to determine who is more likely to cancel or miss an appointment. It then sends alerts to the scheduling programs that doctor offices use to book appointments."

So it digs into your history and looks at your background to see if you are likely to show up for an appointment or not.

"If a patient is in a high-risk category, for instance, it prompts office schedulers to call with a reminder. If the patient cannot be reached, there is a good chance he will not show up at all. So, the doctors could then book another patient for that time slot, keeping the patient flow consistent throughout the day."

Younger patients, new patients, and those without phones are least likely to show up. Established patients, older patients, married patients, and for some reason 10am appointments are most likely to show up.

I'm not sure what happens if an expected no show, shows up. But I'm not sure if I like this kind of intrusion into my file. I mean it makes me want to be a no show a few times just to break the mold.

My thought is people should stick to appointments - it doesn't matter if its a doctor appointment, a business meeting, or meeting a friend for coffee - just show up. Or And call if you are running late. Its called politeness in case you have forgotten.

But I really don't want a computer looking into my background to decide if I am going to be a no-show.

I'm running out of doctor's appointments

I got my latest appointment list from the hospital. I was shocked to realize that I only have eight scheduled appointments. Total. That's amazing. I haven't had less than ten scheduled appointments (which is the most shown on the appointment list) in years.

On one level this makes me very happy. I am sick of being sick and going to the doctor. I spend way too much time there. I have been making a concerted effort to cut back on unnecessary doctor appointments. I have opted out of some doctors simply because I don't think they do me much good. I cancelled my appointment with my radiation oncologist because I have no idea why I am still seeing her.

On the other hand, with the constant doctor appointments comes a sense of a safety net - nothing that bad can be found at a doctor appointment if someone else has seen you just a couple of months before. This can be seen with cancer patients facing the end of active treatment when their oncologist says 'all done, see you in six months' and all the continual follow up ends. This is when the most cancer patients fall apart - their safety net has ended.

When I hit the end of active treatment, I got a therapist who I still see monthly and my health continued its downward spiral so I saw doctors constantly. Finally seven years after my diagnosis, six years after active treatment, my health is stabilizing (or so it seems today) and I stop seeing doctors as often.

Now I am down to a PCP annually, rheumatologist every three months, pain doctor every four months or so, endocrinologist annually, oncologist annually - maybe not any more after the next appointment, dermatologist annually, therapist monthly, and meds therapist twice a year I hope. That works out to 11 appointments a year plus 14 for my mental health. I can live with 25 total appointments. Plus dentist twice a year and periodontist twice a year. So 29 appointments. Plus a mammogram is 30 appointments. Which is really 12 medical, 14 mental and 4 dental. If I split it up, it sounds better. Or I need back injections. Damn I guess I don't have only a few appointments.

Unless of course something happens.

I will push that looming thought out of my brain because I need to 'grow up' (is that a good term?) and get past the 'being sick' stage of my life for now. I need a being healthy stage of my life for now so I can do the things I enjoy and not go to the damn doctor. That would make me much happier.

And the costs just keep piling up

Back at my first cancer adventure in 1981, my father advised me never to let my Blue Cross health insurance lapse because going forward with a pre-existing condition, I could always lose my health insurance. And that was something I could not afford. For quite a few years, until MA changed the law regarding pre-existing conditions, I would often pay for my own private health insurance to ensure I never lost Blue Cross. Even if my employer was offering another plan, I would pay for my own. That wasn't cheap.

Then I had more medical adventures and got to know the surgery department and ER a few more times. I kept my Blue Cross insurance and kept on paying. From time to time I would have a job which offered Blue Cross insurance. Then the law changed and I could stop that.

In the past 7 years since my second cancer adventure, I average a minimum of 50 doctor appointments each year. We max out our out of pocket coverage each year as well. One year a friend convinced to try to keep track of what insurance paid vs what I paid. No contest. I paid a tiny portion of the hundreds of thousands paid by the insurer.

So I am verification of a new study showing that after cancer, patients face rising costs of health care. All of a sudden you get more doctors and more appointments and everything needs to be checked because of your medical history, blah, blah, blah. And there are all the health issues caused by side effects of treatment that may never go away. The lost productivity costs because you have to go to the (damn) doctor or don't feel well enough to work that day. The list goes on.

But now it looks like a cancer diagnosis is financially as well as emotionally and physically taxing.

Caroline's version of the future of breast cancer research

We hear lots of about different breast cancer research studies. We always hear lots about different breast cancer research studies. There seems to be a never ending barrage of breast cancer research. and the research always seems to end up with some combination of the ofllowing

• More research will be needed
• It will be years before we know the real results
• It gets more and more personalized and focuses on smaller and smaller groups
• It will always be waiting for more approvals from the FDA or other organizations
• It will always get more and more expensive.

So my version of what we will hear about the future of breast cancer research:

• Breast cancer research will start focusing on individuals or families.
• The patients and their families will die off before the research is ever finished so it could cure them.
• They won't be able to afford the medications anyway.
• And the needed approvals will always be off in the distance.

This is my cynical side talking. You can also substitute any different ailment for breast cancer here. While there has been great progress, it always seems like we never quite get there. Or maybe I'm just waiting for a cure....

About all that research

We hear about new research again and again and again. We hear it is progress. We hear people hail it as the latest and greatest. But what does it all really mean? Sometimes I get frustrated by all the so called progress that never seems to help me... And then how often do the researchers stop and ask the people with the ailment what they think of the progress? I am not sure. The pharma companies always say its progress because it helps fatten their bottom line and they can feel good about helping more people. But what about us? I do know that the DOD has a program where their cancer research programs include consumers - meaning those who have had the ailment - as part of their proposal review program. But do others? I never know. I wish it was part of the information provided when results are revealed - that others who had the ailment can see the potential benefit by the progress as opposed to someone looking at a bottom line. I think I have been disappointed too many times by clinical trials for which I am not eligible and then research that doesn't help me. I do mean I get advice on what to eat, drink, do (or to avoid) but I am still waiting for that magic pill that improves my quality of life. I would like more research to ask those who benefit from it what they really want.

Social visiting and doctor appointments

I have spent a few hours twice this week at the hospital taking other people to doctor appointments which means I was not by myself while I was there. I was there as the designated driver/note taker. These days I go to my doctor appointments by myself again. I went alone for years and then with the second cancer diagnosis with lots of bad news my husband went with me. He also went with me for chemo infusions and for any medical (mis)adventures where I was not able to drive home.Otherwise, I fly solo.

Yesterday afternoon I started noticing groups of people who seem to accompany patients to their appointments. I can understand bring one family member or friend in case of icky news or because of sedation or something. But I can't understand bringing multiple friends, family members, or children.

I was sitting in the x-ray waiting area sitting next to a woman who was watching a tv show on her tablet (without headphones) who was sitting next to a man (husband?) while they waited for another person. There were also several people drinking the prep for one of those 'fun' tests which takes a good hour or two. I think there were at least three patients in that group who had more than one person with them.

The chemo infusion areas are clearly marked that only one person can accompany each patient in the infusion rooms. The patient exam rooms are just big enough for a patient, a medical professional and one other person. There isn't room for another chair.

When is it a social visit to hang out in the hospital waiting room? The hospital is never a 'fun' visiting place. Even the in patient rooms are not fun places to visit. I just don't understand the urge to travel in groups to the hospital. I prefer to avoid the place myself as much as possible.

How expensive is your hospital?

I had no idea how expensive my hospital, Lahey Health (formerly known as Lahey Clinic) is compared to other hospitals. Its one of those hidden numbers that your insurance company and hospital conspire to keep unknown as they negotiate rates and fees.

I live just outside Boston, which is home to a few big name hospitals, and refuse to go into the city for treatment. The traffic would drive me crazy. And if I am not feeling well, I refuse to deal with the traffic and feel like crap at the same time.

I have friends who went into the city for treatment and whined about all the traffic they sat in and how early in the day they would have to start to get to a 9am infusion. I just assumed all hospitals cost about the same - namely a hell of a lot because nothing is cheap around here.

But now I know... and drum roll... its 12%-40% less than the big hospitals with the fancy names in town. They have a strategy of creating a network of community hospitals where most patients can go for care leaving the big teaching hospital for the sickest people. (Guess which one I go to?) They have been expanding their network over recent years.

Here is a comparison of the costs from 2012 for an inpatient stay.

 

The two hospitals that are lower than Lahey are located away from metropolitan Boston.

I will say I am happy to learn my medical care is not straining my insurance plan as much as if I went in town. And I am happier to enjoy my 10-12 minute drive through back roads with no traffic to medical care.

How much would you pay to heal yourself?

Current pharmaceutical pricing of new cancer drugs are sky rocketing. $100,000 for a new medication designed to extend life by months or weeks is crazy. Here is a very long article on cancer drug pricing and all the issues surrounding it. I say read it, its worth it to get a better understanding of the issues surrounding the high prices.

My few points are:

• Pharma companies spend billions on research, required testing to meet FDA standards, and then can only expect to reap the benefits through the length of their patent which is ten years.
• If they lowered prices, their share holders would be unhappy and less likely to fund additional research for new drugs which would result in fewer new drugs in the future even though the short term benefit of reduced pricing would benefit patients. But the shareholders would be happy.
• In their research process, numerous discoveries do not make it FDA approval and are tossed, throwing out years of research and billions of lost costs.
• And the most appalling: "The high cost of current cancer therapies is at least limited by the relatively small patient populations they treat.  Next generation immunotherapies, including CTLA-4, PD-1 (programmed cell death), and chimeric antigen receptor therapies (CARTs), appear to deliver much improved outcomes (in some cases including complete remissions) with limited side effects – and may also be used to treat many more cancer types and much larger patient populations than current therapies.  Given their inherent value to patients, they could easily command prices well in excess of $100,000 per course of treatment." Please reread that last sentence: Given their inherent value to patients, they could easily command prices well in excess of $100,000 per course of treatment.

I can accept that lots of research can end up in the trash bin if drugs do not perform as expected. I can buy that happy, rich, healthy share holders help companies stay on track. But I cannot and will not accept pricing based on the 'inherent value to patients'. That is basically saying that they are charging what they think a patient would pay.

This is like saying when you break a leg, how much would you pay to have it set and mending with pain under control? At the second of pain, you would probably pay $2000 for that first shot of morphine....

That's insane. Go get some morals and charge patients correctly.

Taking all the fun out.

Cancer has a way of taking all the fun out of life. They cut you up, they poison you, they burn you, and through all that they make you feel like crap. You are tired, trying not to throw up, weak, have the blahs, want to sleep and more. Then you finally start to feel better after treatment and want to return to a normal life.

Then they say don't drink because it can help increase your rate of recurrence. This is along with the advice of not to get fat because that can do the same thing...

It takes all the fun out of everything - don't get fat, don't drink, but you are fine. Big raspberry to that news!!!

How to be a bad patient

Doctors (and dentists) have their own pet peeves about patients. Of course, we can't all be the perfect patient but here are the best ways to piss off your local medical office:

1. Show up late. Its often a medical emergency or patient issue which makes your doctor run late. But you are not helping if you wander in 45 minutes late and your doctor now has to fit you in because your time slot has passed.
2. You ask unrelated questions to your doctor or their staff. If its not a medical problem, its not their problem.
3. You lie about taking your medications. If you didn't take your medication for some reason, at least be honest about it. And if you didn't take your medication as directed and didn't get better, its not their fault.
4. You self diagnose yourself and tell the doctor what you have. Some things are easy - you have a rash for example. You can see it. But don't tell your doctor you have a specific ailment unless it has been diagnosed. That is there job, not yours.
5. You start asking questions at the end of the appointment after your conversation with them has ended. To help remember, bring a list of questions with you and highlight the most important ones so you cover them.

I didn't make up this list, I found it online. But seriously, its just a lot of common sense. 

I try to not do these things. I admit to be guilty of most of these at times. I am human. But I try not to be a bad patient. I have enough ailments so I usually am not a quick visit for them.

Would I Explode?

I try to be a good patient, but sometimes I wonder if I ditched all my pills, would I explode or something?

The legacy of any cancer patient and anyone with chronic ailments is the pile of pills one must ingest daily. I am so sick of being tied to my pill box that I just wonder, what if I ditched them for a day, or two...? Would I ever go back?

I only take a few million, or so it seems:

• One thyroid pill - due to thyroid cancer
• One Femara (AI) to reduce breast cancer recurrence risk
• Two Lyrica for fibromyalgia
• One weekly injection for rheumatoid arthritis
• Two folic acid to reduce side effects from the injection
• Two leucovorin weekly to reduce side effects from the injection
• One daily anti-inflammatory due to bad back
• One weekly pain patch for bad back issues
• 1.5 anti depressants due to the stress and anxiety caused by all these ailments

Plus, a daily multi vitamin, two fiber pills, two calcium pills, one Vitamin E, two Calcium with D, and the Glucosamine that I have to get more of because I ran out. And my twice daily eye drops for dry eyes (which are probably a side effect of some medication).

Is that enough? I think its way too much.

So I have been wondering, what if I went off my meds? Would I become a news headline? You know the kind that ends with ''....  a family member said they had stopped taking their medication before robbing the bank?"

So my chemobrain/fibro fog allowed me to forget to put on a new pain patch this week which I usually change on Mondays. We'll just say that my pain levels imploded this morning so I had to take another pill to see if I can get it under control as I wait for my pain patch.

I guess I may not explode or implode but I would probably be very uncomfortable... Damn.

A very real problem

Drug resistant bacteria are now a real problem world wide. Think of the world before antibiotics where a simple cut could kill someone if it became infected. I find this very scary. As someone with multiple health issues, I am deeply concerned about getting a germ that can't be cured because it is antibiotic resistant.

The causes of this are multiple (from my layperson understanding):

• Doctors over prescribing antiobiotics for ailments that do not require them.
• Patients not taking entire doses of antibiotics so that the germs are not destroyed but adapt and become resistant to the antibiotic.
• In the food industry, livestock is given antibiotics for some silly reason - this leads to low level exposure that help build resistance.
• Discarded antibiotics end up in the water supply - this also leads to low level exposure that help build resistance. 

Now the problem is much more rampant. The World Health Organization recently released a report on this topic.

"Antimicrobial drugs are one of the foundations of modern health care – something we all hope to rely on when we get sick with ailments including pneumonia, urinary tract or blood infections, diarrhea or sexually transmitted diseases, Fukuda says. These infections occur worldwide on a daily basis.
But because of overuse or misuse or improper use of existing treatments, the ability to fight these infections is getting harder and harder, he says.

In its first global report on antimicrobial resistance, released Wednesday, the WHO says " a post-antibiotic era – in which common infections and minor injuries can kill – is a very real possibility for the 21st century."..."

"Conservative estimates in the United States alone suggest 2 million people get antibiotic-resistant infections each year, and at least 23,000 die because current drugs no longer stop their infections."

This is the part that is most scary to me:

"Some people may wonder why they should worry. Fukuda says that anyone who gets a serious infection, develops cancer and needs chemotherapy or requires any kind of surgery could be in a bad situation with no drugs left to treat them. The same is true for premature babies or malnourished children.

After two cancers and eight surgeries, and penicillin allergies, am I going to end up this way?
 
"Bottom line," says Fukuda, "we should expect to see that there are going to be some people who have untreatable infections."

The WHO says there's a need for a global action plan, including:
– better use of vaccines;– basic hand hygiene to reduce infections, such as washing hands;– reduction of non-health uses of antimicrobial drugs;
– support of research that will lead to new and better diagnostic tests;– and better surveillance, to get a better overall global antimicrobial resistance."
 
A lot of this is up to the patient/consumer. We should not demand/expect antibiotics unless they are for an infection. If given them, we should use them properly and finish the entire dose. We need to demand meat that has been raised without antibiotics. We need to go back to the basics and wash our hands and take care of minor injuries before they become infected.

Its too scary a world for those of us with not the best health.

That took a while

I missed April Fool's Day this year because I slept through it. I had a stomach flu. Then I felt a tiny bit better. Then I started running a temperature up to 102.5. Then I stayed in bed for two days. Then I went to the doctor - that was on Monday. The verdict was I had a stomach flu that took me days to recover from.

The doctor took blood work and did a urine test to make sure I didn't develop anything else while recovering. Because of my immune system with RA and being on methotrexate, my body takes a really LONG time to recover from anything.

I didn't start feeling like myself and getting my appetite back until April 10. That would  be 9 days of being sick, having no energy or appetite and feeling like crap.

I am supposed to work 15-18 hours/week. I have worked a total of 12.5 hours in the past two weeks. When I left work on Friday, I said my goal for the coming week is to actually come to work.

I lead such an exciting life. And I'm blogging about it. And you are reading about it! I think I need something more exciting to write about.

Some words of advice to those who don't want the world to know they have cancer

I started this post in mid-2009:

Over the years, I have collected my share of surgical scars - there were the ones that everyone could see and I didn't really care, like knee surgery, or the ones that were so old, like thyroid cancer, no one could see them.

Then breast cancer surgery made all sorts of fun scars. Like a giant port scar on my chest (which they cut into twice just to make sure it really shows) for insertion and removal. The one where they took out lymph nodes by my arm pit (that they also cut into twice so it really shows) once for sentinel node and once for axillary node to make sure there were no more cancer cooties and is visible with a tank top.

Then there is the lumpectomy scar, and the other lumpectomy scar, and the third lumpectomy scar which are usually covered at all times but receive radiation so they really show. Finally, there are the connect the dots on my abdomen from my hysterectomy and my four incisions for my gall bladder-ectomy.

In the midst of all the surgical fun and games, I stopped getting changed at the gym at those few intervals when I actually went. I didn't want everyone to see my scars. I was very careful not to let anyone see anything that might scream out 'SHE'S A CANCER PATIENT' so I made sure I remained clothed. Swimming in public is not an option really these days for similar reasons.

One night I had a brilliant idea and I said to my husband 'I'm going to get up tomorrow morning and go to the gym at 6 am'. Well this was a great idea at 8 pm but not at 6 am. Big surprise, it didn't happen. Then I got a brainstorm, why don't I leave work a little early and go to the gym on my way home before my hair cut. So I put together my bag of clothes and went off to work. I left work on time, didn't get stuck in traffic, and even got a decent parking space at the gym.

I went into the locker room to get changed, which was moderately full, and as I was half dressed, I remembered my connect the dots scar issues. I thought 'what if someone sees my scars????' so I resorted to the really mature 'get-dressed-as-fast-as-you-can-and-pretend-no-one-saw-a-thing'. I always believe in pretending things didn't happen and they don't matter. I know its not mature but it works for me.

-----------------------------------------------------------

Now its 2014, someone had a blog post recently on surgical scars and showing them.I found this draft post and have done some thinking:

• I am much less paranoid these days. I have decided that no one can tell if I am a cancer patient unless I tell them. 
• I am much more relaxed these days. I can actually talk about having cancer with total strangers.
• Finally, surgical scars are better thought of as badges of pride than of shame.

Now I get changed at the gym and even wear my lymphedema sleeve in public with out a care in the world. 

Time has allowed me to change how I feel. The old adage is true, time does heal all wounds... except sometimes that word 'all' should be changed to 'most'.