Shallowness has its place

When dealing with the stress, sometimes we resort to the silly side of life and satire. I mean why not? Its coping as best we can.

Shortly after my diagnosis, I read a great book called "Cancer Made Me A Shallower Person" by Miriam Engelberg. She was diagnosed with breast cancer in 2001 and died from it in 2006. When I read her book in late 2007 or early 2008, I think I threw it across the room when I figured out she died. I was mad. I was not ready for sad endings.

In the six plus years since I have often thought of this book and how I should give it a second chance. It was the first graphic novel I read so perhaps that is part of my response to it. Now, I just read this blog post on the New York Times Well section, living with cancer, Living with Cancer: "Chronic not Cured". Now I think it will read it again. I hope the library still has a copy.

Right to try laws

I have mixed emotions on right to try laws. These are laws which hope to circumvent federal laws and get drug companies go make new and experimental drugs available to patients who are looking for that one last chance, when all other possibilities have been exhausted.

Colorado, Missouri, and Louisiana have already passed these laws due to strong social media programs.With right to try, the patient needs a prescription or recommendation from their doctor for th e new drug that they take straight to the drug company.

It sounds like a good idea for patients who are looking for that last chance. There are patients who have benefitted from these last chances but here are the issues:

• the FDA already has a program for compassionate use where patients have to fill out s lengthy form that usually gets approved.
• Drug companies who provide drugs under state law and ignore federal law run the risk of making the federal government a bit unhappy,

While streamlining the federal governments approval process may not be a bad idea, circumventing the federal government might not be the smartest idea. I think I would want to lobby my federal, not state, legislators to recognize that patients are smarter these days.

Back from our mini vacation

We had a great time. We stayed at a little beach front hotel on Cape Cod. The weather wasn't perfect but we enjoyed ourselves.  However my back is now giving me lots of pain so I will take it easy for a few days to see if it recovers.

Tomorrow I will go to the wake for a friend who just died from breast cancer. I had hoped to go visit her instead. I knew she wasn't well and under hospice care. She had been stage IV since January 2013 but treatment didn't seem to slow the cancer down. It will be very sad. She was only 55 and was first diagnosed about the same time is me.

Cancer really sucks sometimes.

Cancer death rates down but...

Cancer death rates are down for the more 'popular' cancers in general in the last few decades. But then the old 80/20 rule kicks in and these cancers get most of the research and as a result the 'unpopular' cancer death rates aren't really going anywhere.

So here's an article on how colon cancer rates are down. It used to be the most common cancer killer in the US. Now it is dramatically down because of screening - those lovely colonoscopies that we all love so much.

However as this Australian article points out the cancers that are not as common, don't have ribbon decorated walks, runs, months, etc, often don't get as much funding and the death rates haven't budged. These cancers include:

Although these numbers refer to Australia and the video includes the comment that people leave the country for elsewhere for treatment for these under researched cancers, I think that the proportion is probably similar elsewhere. And the point is still valid - the cancers that do not receive the research dollars are the ones where the death rates have not declined.

Another area where research dollars are lacking is in metastatic cancer - cancer which has spread and cannot be cured. For example, a very small portion of breast cancer research dollars goes to metastatic breast cancer research. Yes metastatic breast cancer is incurable but if there was more research, patients might live longer and more comfortably.

It seems to me that cancer research gets to the point of here are clues on its origin but less information and research is done on how its spread. I know researchers are trying to find how to stop metastases and there is a long way to go.

So while the big picture may get a nice rosy hint in the news headlines, there are details behind it which aren't quite as bright.
 

I need to start my own

Not that I have any plans on going anywhere soon. But I read this obituary yesterday and, after laughing at several points, decided I need to write my own.

Someone's death, while sad, doesn't mean they should be remembered with sadness but by how they lived their  life. Walter apparently lived his life with humor and that is how he is remembered.

I want to be remembered how I am and not by little bits of information such as marital status, cause of death, blah, blah, blah. Let's keep life interesting. I better start writing stuff down now so I remember what I want to include....

I just wonder how long Walter's family will keep his ashes around. (And what are you supposed to do with someone's ashes anyway?)

Amanda - you left a legacy

I learned about Amanda yesterday. She was Canadian. She was a goth. She has a brother named James. She hadn't talked to her mother for five years. I know a few little scraps about her because she tweeted her life @TrappedAtMyDesk.

Yesterday morning I read this article on The Meta Picture: http://themetapicture.com/the-final-messages-of-a-dying-girl/

Then I went to Twitter and looked up @TrappedAtMyDesk and read her tweets. All 169 of them. Go do that.

Then this morning I went back and found this video on Twitter.


It is one of the most powerful videos I have ever watched.

Finally I found this blog post by the creator of the video on the life we leave behind.

One of her last tweets was:

Don't spend time being angry at people. Forgive them. Life is entirely too short.

She left a legacy.

For the naysayers who said people with cancer shouldn't use social media? You are stupid and narow minded. Look what you could have learned.

How long - what every cancer patient wants to know

At every cancer diagnosis, one of the first thing every patient wants to know is "How long do I have?". (If you didn't wonder, there is something seriously wrong with you in my opinion.)

And they never really tell you. You go look up the statistics and find out the five year survival rates - which are always based on what was standard of treatment then and not now. You can over think all the averages to figure out your own expiration date. You ask your doctor questions - I once asked my oncologist what my odds were (after a lot of deep thought and gut wrenching decision making) and got some nice vagueness that didn't mean squat.

Doctors seemed to be trained not to give you a solid answer. Someone posted a link to this article by a self described 36 year old non-smoking neurosurgeon who was recently given a nasty cancer diagnosis. I read it and a lot more makes sense.

The patient/doctor clarifies about what the doctors are trained to say:

"My standard pieces include “it’s a marathon, not a sprint, so get your daily rest” and “illness can drive a family apart or bring it together — be aware of each other’s needs and find extra support.” 

I learned a few basic rules. Be honest about the prognosis but always leave some room for hope. Be vague but accurate: “days to a few weeks,” “weeks to a few months,” “months to a few years,” “a few years to a decade or more.” We never cite detailed statistics, and usually advise against Googling survival numbers, assuming the average patient doesn’t possess a nuanced understanding of statistics."

"In brain-cancer research, for example, while the numbers for average survival time haven’t changed much, there’s an increasingly long tail on the curve, indicating a few patients are living for years. The problem is that you can’t tell an individual patient where she is on the curve. It’s impossible, irresponsible even, to be more precise than you can be accurate."

It is true that we can't expect a doctor to pinpoint our expiration and then we cannot expect them to give an answer with any sort of specificity. But we still ask. Because we still want to know how long.

I made it

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

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

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

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

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

When to pull the plug?

The ever so smart 'them' tell us to have the important discussions ahead of time. You know the discussions about life support, casket choices, funeral ceremonies, and all that. Those uncomfortable discussions that should not be avoided.

The young man in this video was taken off life support at his request and died shortly after. You need to watch the video to get the whole story.

I fully support this decision. He made his opinions known prior to his fall. He repeated his wishes twice to the doctors and to his family members.

I am so glad that there was no dispute, no need to call in lawyers and get a judge to sign off. This is the way that these decisions should take place - with no fanfare, no discussion - just the confirmation needed.

The emotional breakthrough

In a few weeks I am going to get together with some friends. When we were all diagnosed with breast cancer, we belonged to the same 'introductory' support group. Six years later we are still in touch and get together. I have been bad recently and haven't made it to some of the recent get togethers - between being sick and on vacation, I missed more than a few.

One member of the group passed away a few years ago. When she was in our group, she was on her second diagnosis and later had a recurrence. We supported her through more chemo. We still miss her.

Another member was diagnosed with stomach cancer a year and a half ago with metastases (from one of the cancers - I'm not sure which or even if she knows - to her bones). She has been through chemo twice now and she just had another PET scan showing her bone mets have progressed. She recently started chemo again.

She is struggling emotionally with this because I think she finally she is realizing that this is the way her life will be. Chemo followed by scan, more chemo or other treatment, throw in a few clinical trials, and more tests and bad news.

I have other friends who are in stage IV. Some of them cope better than others. Some family members cope better than others as well. I think, now I have never had stage IV cancer so I am supposing here, that there is an emotional breakthrough when they finally realize that their treatment will never end in a positive fashion.

Some people take it better than others. I know people who at the stage IV diagnosis, start saying they are terminal. The friend I am seeing tomorrow, and many others, were seeing the world with rose colored glasses, and assuming that life will continue to go on.

Eventually they come to the realization comes and they have the emotional breakthrough where they realize that they are living the life of the metastatic patient with chemo, trials, scans, and more and it won't end positively.

Do you want an eulogy or a resume?

This is an interesting concept and I read an article on Huffington Post about it. A friend of mine died a few years back from her asthma. She was single and not close to her family. Her funeral was well attended but one of the few speakers was her boss at her job.

We thought that was weird. He did talk about her at her job and a long lost love. But it was a resume.

I don't want my eulogy to talk about my life in marketing and non profit work. I don't want my eulogy to be about living with my medical history (where they always have to be sure). I do want my eulogy to be about meaningful things I have done - lots of time outdoors, skiing, ice skating, hiking, camping, reading, unable to sing a note, knitting, consignment stores, travel, organic vegetables - and the people who have meant a lot to me - husband, family, and friends.

I think I need to write it myself. Damn. Its a good thing I plan on being here for a long time so I have plenty of time to write it. What about you?

The guilt factor

This is a less discussed issue relating to cancer diagnosis and treatment - the guilt factor. Sometimes its not even mentioned, while other times it is just brushed off as something you need to learn to live with.

Guilt is what got you to do what you were supposed to when you were a child. Guilt is what your morals use to keep you in line.

But then we feel cancer guilt which is different. Why didn't I get it and they did? Why did they have a recurrence and I didn't?

The more cancer friends I have gained, I have also lost some. I have the little list of in memorium blogs I used to follow, the group of friends on Facebook that are no longer here and are in memorium, there are the phone numbers in my phone that I know don't work any more. And when they do again, it will be a stranger's voice on the other end.

It seems now every month or two, or even more frequently, someone I know either has just learned about their stage IV diagnosis or I learn about their funeral arrangements.

Each time, there is a double dose of emotions the little tiny - "I'm glad it wasn't me" which is immediately followed by the huge "how could I even think that?" and then followed by cancer survivor guilt.

Sometimes the guilt lurks in the back ground and sometimes it emerges up front. It gives us down days but then we stuff it away and we learn to cope again. But its always there.

End of life issues

Modern medicine has progressed to the point that often death comes only after you are 'unplugged' so to speak. We keep our hopes up that time will be far in the future. We plan the way we want to go with our living wills, health care proxies, etc. But I do often wonder how do doctors and health care professionals decide when it does not do any good.

I am being morbid here? I don't think so. I read two articles recently that caused me to do some thinking (which I know can be dangerous but not morbid). 

The first one discusses dying connected to a machine. Do you want to die tethered to a machine? I do not thank you. I do not want to die connected to any machine which might be the least bit uncomfortable.

There is also the issue of what could be called 'futile' care. When does caregiving stop having a benefit? When are doctors continuing to treat patients when there is no benefit? There must be a fine line where the body is too weak or sick to respond to treatment or there simply are no more treatments available. Once that line is crossed, anything more than palliative care is futile. Even keeping someone on a machine could be futile if its merely keeping their lungs breathing and heart pumping.

The article talks about building trust between doctors and patients. But this also should include patients families so they understand that there is nothing left to be done.

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'.

That battle thing

Earlier this week, we went to see the rehearsal for the Battle of Lexington, which will be held at 530am on Monday morning if you wish to see the real thing. (I'll be sleeping thank you.) That is a battle, which led to a war, which led to the Constitution, the United States, and somehow to where we got to today with a polarized government, financial problems, and global warming. But I digress.

There has been much talk recently about Roger Ebert and how he lost his battle with cancer. He didn't lose his battle. He lived his life and then died. Where did we get this battle thing regarding cancer and other ailments anyway? A battle is not about medical ailments.

If you look at Dictionary.com we get:

bat·tle¹ [bat-l] noun, verb, bat·tled, bat·tling.

noun

1. a hostile encounter or engagement between opposing military forces: the battle of Waterloo.
2. participation in such hostile encounters or engagements: wounds received in battle.
3. a fight between two persons or animals: ordering a trial by battle to settle the dispute.
4. any conflict or struggle: a battle for control of the Senate.
5. Archaic. a battalion.

Do you see anything cancer related or medical related there? I don't. So why do we use these terms? Opposing military forces are not related to cancer. 

If one has cancer or other ailments, they are not participating in hostile encounters or engagements. 

If one has cancer or other ailments, they are not fighting with another person or animal.

Having cancer is not a conflict or struggle, its an ailment that is treated. 

And cancer has nothing to do with a battalion, even in old English.

Maybe because someone thought they made them stronger if they were battling?

Maybe because someone thought a battle or war is a better image than a person?

Maybe because someone DIDN'T think?

Please do not tell me I am battling anything. I am not. I am living with multiple ailments. I have a life and I am not at war.  Roger Ebert did not battle anything, he also was a person living with medical ailments as well.

On being an inspiration

Yesterday I went to the wake for a friend, Sue, who had been diagnosed with breast cancer 21 years ago. When I met her in the breast cancer support group I used to attend probably around five years ago, she had been stage IV for a number of years - probably more than a dozen.

She was quiet when she started attending the support group but then started to open up about her story. She had a cheerful smile and a twinkle in her eyes. No matter what she was going through you would always smile. Over the years, I helped convince her to go on a Casting For Recovery retreat and watched her learn to fly fish - we never caught anything but it was the fun.

I stopped attending the support group several years ago but would still see her at events hosted by the center which runs the group. She was always smiling and poised, never letting the inner stresses dampen her spirits.

I met her family yesterday. Her husband, who I had never met before, asked how I knew her and I told him about the breast cancer support group. He said that it was a wonderful little organization and told me the story that she had told him. One of the other members of the support group came up to Sue and told her that she was an inspiration to her on how to live with breast cancer.

I thought about that and decided that I agree. She had late stage cancer and greeted the world with a smile and a twinkle in her eye. She didn't let it stop her from trying something new and having fun. I am inspired as well.

Hospice shouldn't be a 'bad' word

What do we think when we hear the word 'hospice'? Face it, you probably think 'they are a goner' and wait for a funeral notice. How supportive and positive is that?

I have long suspected that hospices are not as bad as we think. Yes they offer palliative care when patients get to the point where they are no more treatment options. But they offer an alternative to nasty treatments. If you were the patient, how do you want to spend your last days/weeks/months?

Choice A is undergoing aggressive treatment which cause all sorts of nasty side effects resulting in discomfort and unpleasantness and you are either a patient at the hospital or taking frequent/daily trips for addition medical adventures? Choice B is receiving palliative care where your comfort is of utmost importance that is offered either in the privacy of our own home or at a facility which is quiet and full of caring people focusing on pain and your and your family's emotions?

Me I want choice B? I am a wienie. I do not want to die full of tubes and pain. I want to to go quietly (after trying as many options as are available). I do not want pain. I do not want to die alone in a hospital. Let me go write this down before I forget so that when the time comes my wishes are honored. (Damn, I'm turning in to my grandmother who had an 'in case of death' envelope - 2 by the time she died at 96 - full of little pieces of paper with instructions.)

A friend of mine who died from breast cancer a few years ago was receiving hospice care at home. I visited her about a week before she died and brought her take out Pad Thai. She was happy, cheerful, and on oxygen. Her mother and step father were visiting for a few weeks. But while there was no hope for treatment, she spent her last days pain free, living with her family and visiting with friends. That's the way it should be.

Hospices are trying to rebrand themselves in terms of the care they offer. People think of hospices probably just as you do - the goner thing. But hospices offer palliative care for months where people actually live longer and more comfortably than those undergoing aggressive last minute treatment.

One of the problems is doctors are referring people to hospices later and later. There are several theories on this including costs - hospice care costs less than hospital care but that means the hospitals lose the income from the patients. Also, doctors may be hesitant to admit they can no longer help a patient and by referring them to hospice, they are admitting defeat

Me I'll be signing up for hospice care when I need it. But I hope that is many years from now.

They must have a really big crystal ball

The title of an article published by the BBC screams "Cancer Death Rates Set for a Dramatic Fall" by 2030. Yup. I believe it. Not until I see it. Thats 18 years from now. There are still some cancers increasing in incidence. People are still dying from cancer. Cancer rates are increasing in third world countries as well.

They state that there will be a 17% drop in the death rate due to advances in treatment and decreases in smoking rates. They predict that the death rates will drop from 170/100,000 deaths to 142/100,000 deaths. Here is the little chart showing their data in a very simplified form.

 

Let's put some numbers to this to see how it looks on this side of the pond.

	US 2012 Predicted Deaths	%+/-	estimated 2030 death rate
All cancers	577,190	-17%	479,067
Breast cancer	39,920	-28%	28,742
Bowel/Colon	51,690	-23%	39,801
Kidney	13,570	-17%	11,263
Oral	7,850	+22%	9,577
Liver	20,550	+39%	28,565
Lung	160,340	-8%	14,7513
Ovary	15,550	-42%	9,019
Pancreas	37,390	-3%	36,268
Prostate	28,170	-16%	23,664

So if my numbers are correct (I was not the stellar math student and claim chemo brain so there is so margin for error) while it is exciting that there is an expected 42% drop in ovarian cancer death rates, that really only 6000. This would be 100,000 fewer deaths in the US in 18 years. Or a drop of 5555 less each year. At that rate it will take 86 more years to end cancer deaths in the US. That is too long as far as I am concerned. Most of us can expect to be here in 2030 but probably very very few will be here in 2116.

End of life medication

In Electionovember (this is not a political post), Massachusetts residents will have the opportunity to vote on End of Life Medication. There are several requirements to the law:

• Must be an MA resident
• Must have been given less than six months to life
• Must be capable of making and communicating medical decisions
• Must voluntarily make a wish to die and make an informed decision.

I will vote for this. First of all, I think it should be an option. If you are dying and in pain and there is no hope, why can't you say 'that's it' instead of lingering in pain for a few more weeks? If you disagree, you do not need to make the choice to do it.

The problem with these laws when they try to pass them, is people start saying 'well I would never do that' and people come out of the woodwork saying my neighbor's hair dresser's cousin's friend was given 3 months to live and 20 years later they are still here. Everyone has the right to their own beliefs and this is a law that would allow people to make a difficult decision if they wished.

What if you had something like Parkinson's or Alzheimer's which is irreversible and incurable and you knew you were destined to die over a period of months or years and you could make the decision while you were capable that you wanted to be prescribed end of life medication when you got down to the bitter end? If you know your lot in life is to die a slow and painful death, wouldn't you want a way to avoid the pain if you could? We do not know what is in our future and we could all end up in that circumstance. I think we should be allowed to have that choice if we choose to.

Planning ahead

For a mere $20 you can purchase an ObitKit and write your own obituary. Its the latest thing in the American rate race, keeping up with the Jones's. I mean why not? Your funeral is the biggest party of your life and you don't get to attend. If you write your own obituary you can advertise yourself and establish your brand for eternity (sorry my inner marketing person kicked in). You won't need to be the family member who brought the disgusting fruit cake to Christmas dinner for 20 years, you can become the family member who went on exotic vacations and lived life to the fullest.

It actually makes sense. What do you want people to remember you by? What they can remember or what you can remember? My family is a bunch of planners. My grandmother prepaid for her funeral (and got a really good deal because she didn't need it for 20 years), drafted her death notice, and planned many details. It was much easier on the rest of us. And we knew what she wanted in the paper.

Think about it, if you died tomorrow (not that you are but its the principle here - work with me), what would your family write about you? That you didn't go grocery shopping with reusable bags or were always the one who left the iron plugged in when you went on vacation? Or had really bad dandruff (okay I'm stretching here). But this is your chance to leave things your way.

I think of it as a logical extension of your medical proxy, next comes the funeral and the death notice. Start planning. Make it all about you. Just make sure the wake is held while you still can attend.