Sunday, January 22, 2017

Coping

Because I had an awful cold over the holidays , we postponed Christmas. It was yesterday for our family. It meant a ton of cooking, houseguests, and a big  family meal with three generations. It was nice. But I am exhausted. We have enough leftovers for a week. That means I don't have to cook all week. And can nap.  Daily. I am exhausted (did I say that already?)

Friday at the gym I was seated on the stepper next to one of the local 'characters' who reminded me that we need to treasure those family events because not everyone will be there forever and we need to appreciate them why they are here.

Yesterday I enjoyed time with my family. Then this morning I woke to the sad news that a friend who I met through Relay for Life in 2009 (I think) while she was finishing high school and was of the key people involved. After she finished high school,  she went to New York for a while until she started having some digestion problems. She came home and found she had liver cancer. She had multiplesurgeries, months in the hospital, and lost her life this morning at age 25.

A death at that age reminds me of the advice at the gym, appreciate  your times with those you care for.

Friday, January 20, 2017

Blogging at the Gym

Im at the gym,blogging during cardiovascular. My laptop is having another momentary lapse after downloading Windows 10 updates. The guy at the computer repair place says it might be hardware. I disagree and am thinking in the old days I would have booted from a floppy and recovered. But since floppies are now obsolete, I can't use that option. So I am stuck with my tablet and can't access my non-backed up files on my laptop.

In addition to my computer issues, it's been one hell of a week. Basically I  had an unexpected cancer freak out for delusions in my brain but am fine. It looks meant four doctor appointments and tests to discern the reality which  showed how much of an idiot I can really be.

Also we are having a belated Christmas dinner because I was so sick with a cold in late December.  This means houseguest and a family dinner for 11 tomorrow and cooking this afternoon when I would  rather take a nap.

In addition to  the gym, I have already been to a doctor appointment and am heading to the gas station, grocery store and library before heading home.

But it will be nice to see everyone.  We will also continue the 'no politics at the dinner table' rule so we can find out how everyone is doing instead of rehashing political opinions.

My goals for next week are to recover from this week and nap daily if I can.

I can't write any more because I am single finger typing on my tablet screen and it's too complicated for me.

Wednesday, January 18, 2017

Friends

We all have our best friends, our close friends, our coffee pals, our nod across the street friends, and our sort of friends. Then us special people have our cancer friends.

I have two best friends, one from college who has lived 1000 miles away for the last 20+ years. We get together as often as we can, to cause trouble until about 9pm when we get tired and go to bed early. My other best friend lives about half an hour away. We can't get together to often because she has a big career and child and her husband works long hours as well. We do get together for lunch and shopping as much as we can. Both of them are the ones I call to catch up and talk about life.

But then I have cancer friends. They are the ones I get together to talk about life, cancer, and the havoc it has wreaked on out lives. They are also the ones we call when we have those momentary  cancer freak outs. You can't have cancer and never freak out. It's just not possible.

It doesn't matter how long it's been since you have talked to your  cancer friends, because they will answer the phone and tell you that you aren't crazy. They will virtually hold your hand at the worst moments in your life. Because they know you will do it for them.

What is the Saying? Hold your friends close and your enemies closer? It should be added that you should hold your cancer friends even closer. 

Tuesday, January 17, 2017

When life gives you lemons, make lemonade


I found this picture  and article and then learned about the organization Worldwide Breast Cancer today. (I thought I knew about all breast cancer organizations,  but obviously I  am not as smart as I thought.)

It's not a new concept but it uses a dozen lemons to show what breast cancer can look like. Who knew it could be so easy to show women  what to look for instead of thee vague 'something different'. This started 15 years ago and has been translated in 70 languages. And if you go deeper into their site  you can see more in depth explanations.

Monday, January 16, 2017

I Took A Day Off

My husband has a long weekend so yesterday we took a day off. Together to just hang out and relax. It was nice.

We drove up to the ocean. It was high tide , windy, and cold. But we walked a little on the beach. I made a big mistake and turned my back on the ocean . (NEVER turn your back on the ocean.) A wave came up behind me and I got sea water and sand in my shoes. Not a good idea. But then my husband got the bright idea to put my socks on the dashboard in the sun. And I turned on the defroster and dried my socks. And dumped the sand out of my shoes.

Then we did a little shopping, had an unhealthy late lunch with  view of the ocean and came home. We just needed a day together.

It was a nice day.

Saturday, January 14, 2017

Bad Dreams

(Subtitle: How to drive yourself insane crazy.)
Life on a medical roller coaster sucks. As a potentially sane person you do your best to tamp down any part of those 'what if' fears during the day time. This is a big part of learning to cope with a crappy medical diagnosis, especially a cancer one.

But then comes night time. You are trying to sleep and you dream about 'bad things'. All those evil little 'what ifs' come lurking into your head. Then you can't sleep. Then you are cranky because you are tired. And you can't control your brain because you didn't get enough rest.

Friday, January 13, 2017

Health Insurance

I am very concerned about the potential changes in the national health insurance program that is in place. In principle I like the idea of national health insurance so that patient's are not victims of their health insurance company or are tied to jobs they hate just to keep their health insurance.

I also like the idea of no pre-existing condition clauses, young adults can stay on their parents insurance longer, and no lifetime insurance caps. And I want all of these items to stay. I also want every American to be able to get health insurance if they want.

I would like to see changes that help reduce costs of insurance and not to have huge premium increases allowable. I would like to see changes where medication costs are reduced as they are one of the single largest factors causing such high increases.

What I dislike about the proposed changes are the following:

  • I feel that the changes are being rushed by the new administration. I have heard that the changes will happen within two weeks and it will be comparable plan. I just can't see that happening so fast as it impacts millions of people. No changes will work unless it is properly planned so that patients (the public) are not left hanging without insurance.
  • I believe it is just partisanship that is causing the rush to make the changes. People did not like the former president so they want to get rid of his signature legislation as fast as they can.
We are a bunch of innocent patients here who can't afford to be without health insurance. I am lucky enough to have health insurance through my husband but I know many people who are depend on the Affordable Care Act for theirs.

So I am asking all the politicians to be careful about making abrupt changes with millions of people's health insurance.

Thursday, January 12, 2017

Facing Anniversaries

So I was diagnosed with breast cancer at the end of May 2007 which means I am almost at my ten year mark. When I was diagnosed I hopped online for a lot of emotional support where I met a bunch of great people who really helped me learn, cope and adapt to this new phase in my life.

I got online immediately (probably within a week of my diagnosis) and met so many people who were already through most of treatment and were diagnoses up to a year or two before me. Now I am still in touch with them and watch them celebrate ten years out from their breast cancer diagnosis. I am happy for them but I am not sure how I feel about me.

Honestly I just cant see myself wanting to celebrate ten years since my breast cancer diagnosis. I don't think I have it in me.

When I was diagnosed with thyroid cancer in 1981 at 19 I always told myself I would throw a party and finally talk about it with everyone when I was 20 years out. That didn't happen. So I said at 25 years out. That didn't happen either. Then I was diagnosed with breast cancer, my health fell apart and I am not in the mood for celebrating anything.

I mean I appreciate that I am still here but not so sure I need to throw a party or celebrate in anyway.

Tuesday, January 10, 2017

More Confusion

So a recent study shows that one third of all breast cancer diagnoses that are treated unnecessarily. I find this statistic a bit appalling.

First of all, we are all aware of the issues of over treatment for breast cancer and other ailments. Technology is advanced to the point that it can find little teeny tiny things that may or may not turn out to be nasty. Second of all, the standard these days is to treat all these potentially bad things as bad things because there is no way to know which are good and which are bad.

And that is my point. Since we don't know which ones are bad (i.e. potentially fatal) or not going to do anything bad, how did they come up with this statistic? That one-third of diagnoses are over treated.

The article cites a Danish study which showed an over treatment rate of 2.3%. The American College of Radiology also states the rate is there but definitely lower than what is cited in this new 'study'.

So this new 'study' is a piece of crap designed to scare the crap out of all of us breast cancer people. We are the ones that hear a 90% survival rate and convince ourselves we are in the 10% so of course we are all going to think that that we are in the one-third that was over treated.

I have one request: breast cancer research should be done to figure out what could be bad and what won't be.

Monday, January 9, 2017

Accountability

I am a strong believer in accountability. I also often think that big pharma is not held accountable for the costs of their medications to patients and only to their stockholders. I have been following two cases on-going in the media. The first is the idiot Shkreli who raised prices on medications and smirked at Congress when asked about it.

The second case is the one of the CEOs of New England Compounding Center who is on trial for 25 counts of second degree murder as a result of the national outbreak of fungal meningitis in 2012 which killed 64 people.

"In 2014, federal prosecutors charged 14 former owners, pharmacists and pharmacy technicians of NECC in connection with the tainted steroids. The racketeering indictment alleges that pharmacists failed to follow industry standards for cleanliness, used expired ingredients, and failed to test drugs for purity before sending them to hospitals and pain clinics. It also alleges that employees falsified logs to make it look as if the pharmacy's so-called clean rooms had been disinfected when they had not."

These are not nice people who did this. I am glad their executives are being punished. Seriously. You cannot expect me to believe that the employees came up with this on their own. I am sure that the orders came from above to cut corners.

Executives who order people to do wrong should be held accountable for the results. I am going to follow this trial as it unfolds.

Sunday, January 8, 2017

Cost of Exertion

I read an article over at Rheumatoid Arthritis.Net on the cost of exertion. What is the cost of exertion you ask? Basically, if you run a marathon, you might be a little tired the next day if you are a normal healthy person. Or, if you are me, you go to the gym and the grocery store in the same day, and you need a nap.

If you have a chronic illness (or ten) you have a greatly limited ability to do much of anything. Learning to accept your limitations is an important part of coping with your ailments.

Yesterday I met a friend for lunch and then we went shopping for just over an hour (because it started snowing like hell and we wanted to get home before the roads got bad). Then I needed a three hour nap. And today I am still exhausted.

But I am happy I am tired because I did a fun thing. As opposed to going to the grocery store and then needing a nap.

My life is a balancing act. I balance the exertion with recovery. I could spend all my time doing nothing, which would not be good mentally or physically. I wouldn't be in any shape to have any strength to take care of what I need to do. And emotionally I would be a wreck. Or I could work as much as I possibly could, and I wouldn't have the energy to take care of myself and would be in worse shape.

Or I could do what I can, laundry, groceries, and the gym three times a week (which is taking care of me) and then resting and recovering as needed. I spread out my exertion. My husband does all the heavy lifting and I do the laundry and groceries - but  he carries them up and down stairs for me.

But sometimes I can't do even the basics because I need the rest. That is what the cost of exertion is to me.

Saturday, January 7, 2017

Sensitivity and Expertise

A few days ago, I blogged about the apology from an oncology nurse after she was diagnosed with cancer herself. I do feel strongly about this issue. This morning I received a comment from someone (anonymously) on this post:

"I totally disagree with the premise that people must actually have a disease to understand or help those with the disease. Sensitivity is a wonderful characteristic and we hope that our care givers have it. But expertise, with or without sensitivity, is invaluable,and may spell the difference between survival or not."

I disagree with this statement and wanted to clarify my position on this point. 

There is nothing wrong with sensitivity or expertise. We hope that our medical professionals have these qualifications. But the point of my statements is that what medical professionals, who do not have personal experience with the ailment they are treating, lack is the understanding of what a patient is going through. 

What is the patient going through when someone says 'you have___' (fill in the blank with the nastiest ailment you can think of). Their life probably just completely turned upside down. They have no idea of what treatment protocol they are facing. They are concerned about their finances. They are concerned if they will still be able to work. They are concerned if they are going to live.
Then they are here are some tests you need. And you get to wait for the results. How long? 'Oh, a few days maybe. We'll call you as soon they come in.' (Unless of course we forget to call you and you have to wait a bit longer.) Will we call you before the weekend so you aren't stuck in limbo for two more days? No promises there.

And that test we sent you to? Oh, it won't hurt. You will only feel a pinch (that is what they told us to say but we aren't really sure because we haven't had this on ourselves). 

Side effects? Here's the list of what we are allowed to say. 'Some patients feel nauseous. If it lasts longer than 48 hours or you really can't keep anything down, call us for more meds.' (Unless its the weekend or after 5pm....)

Thank you for your sensitivity and expertise but sometimes its not enough.

Friday, January 6, 2017

Finding People Like You

What is the point of a support group? Finding people like you to talk about your issues - whether its widows, cancer people, parents of autistic children. Sometimes it helps to talk to people with similar issues - everyone has cancer for example. But sometimes you need to find people with the same cancer as you.Its pretty easy to find women with breast cancer because there are support groups for them everywhere. Its other types of cancer that can be hard to find.

But then there comes the question: How do you find people like you? There aren't little registries for people with a specific kind of cancer to sign up. So how do you find them? Asking other people who you meet.

I don't mean go up to strangers and ask them if they have a type of cancer. I do mean ask your oncologist about support activities such as support groups where you might meet other people with your type of cancer. Another place you might look for similar people are on social media - just like
networking for a job.

It is so important to find people who are coping with the same issue as you. They are the only one who really understand your questions, who have been faced with the same issues have you,

As I strongly believe that your emotional side is as important as the physical side, finding support is crucial.

Thursday, January 5, 2017

The Wrong Doctor

Synopsis of a very sad story: A man with horrible pain issues was cut off of pain meds by his doctor and as a result took his own life.

The details: The man's pain issues were treated by his PCP who was concerned about potential opioid abuse and cut him off of medication. His PCP was concerned about losing his own license as a result of tightening laws regarding opioid medications due to the current abuse epidemic. His pain, when untreated was so bad, caused him to commit suicide.

I think my big problem is that the man was not treated by a specialist who would have a better understanding of options for treating his pain. There is a reason there are specialists. After specializing in their training, they also spend time researching new medications and treatment protocols. Let's see, would you have your primary care doctor take out your gall bladder? Probably not. You see my point.

Personally I want a specialist for pretty much any chronic condition. Something that isn't going away ever requires a specialist.

There is a lesson to be learned here for everyone. If you do not get the treatment you need from one doctor, find a new one. I do not mean doctor shopping to see who is going to give you a prescription for something for you to abuse or distribute.

A doctor should want to work with you and help you with your problems. They should be open to discussion and share decision making. If your doctor cuts you off, find a new one. Don't suffer.

Again, it is such a sad story that this man was in such pain that he took his own life. My sympathies to his family. And to his PCP who cut him off? Thumbs down to you!

Wednesday, January 4, 2017

A Post for Every Oncology Medical Practitioner

I have often spoke about how nurses, doctors and other medical practitioners just don't ''get it' because they have never been through it themselves. They also don't understand what they do not understand, because they haven't been there.It has been my greatest desire to have medical practitioners who have had the ailment they are treating. Especially oncology medical practitioners.

An oncology nurse recently wrote an apology letter to all her patients. She had not 'gotten it' in all her dealings with patients in her care. Now she knows what she did not get because she has now been diagnosed with a stage III colon cancer. This unfortunate diagnosis now helps her in her dealings with patients. Her letter begins with the paragraphs below. But please go read the entire letter yourself.

"Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.

This thought has been weighing heavy on my heart since my diagnosis. I’ve worked in oncology nearly my entire adult life. I started rooming and scheduling patients, then worked as a nursing assistant through school, and finally as a nurse in both the inpatient and outpatient settings. I prided myself in connecting with my patients and helping them manage their cancer and everything that comes with it. I really thought I got it- I really thought I knew what it felt like to go through this journey. I didn’t.


I didn’t get what it felt like to actually hear the words. I’ve been in on countless diagnoses conversations and even had to give the news myself on plenty of occasions, but being the person the doctor is talking about is surreal. You were trying to listen to the details and pay attention, but really you just wanted to keep a straight face for as long as it took to maybe ask one appropriate question and get the heck out of there fast. You probably went home and broke down under the weight of what you had just been told. You probably sat in silence and disbelief for hours until you had to go pretend everything was fine at work or wherever because you didn’t have any details yet and wanted to keep it private still. You probably didn’t even know where to start and your mind went straight to very dark places. That day was the worst. I’m sorry. I didn’t get it."

Once you read the letter, please share it with your medical professionals. We can help educate our medical providers and perhaps this would help them understand our side.