More on Life After Breast Cancer

Beth Caldwell is another story about life after breast cancer. But the really sad kind. She was diagnosed with breast cancer at age 37, which is three years before she would have gotten a mammogram. Unfortunately she had a huge factor going against her with her diagnosis. She was diagnosed at stage IV.

This is a very bad thing. This is not the good painted pink breast cancer. This is the really bad kind. This is the cancer that something like 7% (or so, I can't remember the exact number) diagnosis that women (and men) face.

When you are diagnosed at stage IV, you are already past the point where everyone else is at and where everyone else is trying not to get to. Their treatment is trying to keep them from getting to Stage IV. Beth didn't have that luck.

Now Beth is gone. She passed away on All Souls Day, November 2, 2017, 3.5 years after diagnosis. That is a very short time. If I can do math, she was just over 40 years old. She left a husband and two children.

Before her diagnosis she was an attorney. She left her work and became a mom and a cancer patient. That's a sucky life. The cancer patient part. Not the mom part.

I don't claim to know Beth. I have read her blog a few times.... but not every update, but most of them. But I feel for her. I can relate.

So there can be millions of women with pink boas walking and running their events who say they are lucky to be 'survivors'. But the sad side of breast cancer is people like Beth. She didn't make it more than a few years.

You ask how breast cancer sucks? This is the ultimate suck. I hate breast cancer.

An Educational Conversation

I had an interesting conversation. I am doing some research on hospices and palliative care (for someone else, not me). I met with a social worker who used to work for a hospice. She was very helpful.

I had no idea how hospice care worked, especially at home. Basically hospice care includes palliative care. If you have hospice care at home everything comes to you. Doctors, nurses, social workers, and more. It lasts for up to six months. If, at the end of the six  months you are still alive, you can be recertified for more hospice time (I think) unless you are too healthy and stable and then its back to reality.

Hospice care is also paid by medicare or medicaid unless you have long term care insurance. So think of it as free care when you are sickest and it all shows up at your house. If you are interested in hospice, its best to start research as soon as possible.

I found it very interesting how the process works. And learned that basically if you have been given less than six months to live, sign right up.

So from what I learned, when I get to that point in life (face it we are all going to get to that point in our lives), I will sign up for hospice.

What would you do?

This morning I was reading Kaylin's blog over at Cancer is Hilarious. She has had all sorts of cancers before the age 30 (4 diagnoses I believe) and now is faced with a recurrence that looks like will do her in sooner as opposed to later. She has a dilemma. She wrote:

"Now that my very aggressive and deadly bone cancer has come back for a third time, I don't have many options. It is almost a certainty that it will kill me. There is one regimen of chemo left that might prolong my life, but of course chemo is absolute hell, and I am on my own here in NY with no family or husband to take care of me. I'm not entirely sure I can handle it on my own, for the third time. So now I am trying to decide what the rest of my short life will look like: do I stay in NY? take a break to feel healthy and enjoy myself before chemo? Or start right away to maximize my chances of remission? Should I move back to CA where I have family to take care of me? Should I be planning my death? How should I spend the rest of the life I have left?"

My comment back to her is to skip the proverbial bucket list and go find her happy place to live out her life - on the beach, in the mountains, visiting friends, what ever works for her. But my question for all of you is if you were given this kind of diagnosis, what would you do? Not a bucket list, but how would you make yourself happiest if you were given a short time to experience it?

Personally I find  the idea of a bucket list a bit of an avoidance mode - you focus on doing the little things that you want to do but are skipping the big picture that you are dying. I keep changing my mind. Would I want to live on the beach or in a cabin in the mountains? Would I watch sunrises or sunsets? Would I continue to seek medical care or go the palliative route to be more comfortable? (Probably palliative.) My funeral by the way will be a kick ass event where everyone has fun and not a lot of tears. And the guest list will be huge.

That bucket list thing

I never had heard of a bucket list before the movie of the same name. I did like the movie and need an assistant named Thomas to help me out sometimes. But do I need a bucket list? I am on the fence on this.

But here is this young woman in Wales who is terminally ill with breast cancer and was given 3-6 months to live, more than six months ago. She decided she was going to create a bucket list with the help of other terminally ill people. She is asking for help in figuring out what to put in her bucket list.

Some of them are:

• running naked down a busy street
• trying out her coffin dressed as Wonder Woman
• knocking over displays in stores
• riding in a race car

I would probably try those except the running part. I'm not that good at running these days.

What suggestions do I have for her?

• borrowing library books with no intentions of returning them.
• crap I can't think of anything else. 

Maybe I don't want a bucket list. But anyway. Go watch Rowena try all sorts of things and give her your suggestions if you are terminally ill.

You can read about her here.
And you can watch her here.

Lessons in dying

I started this post shortly after Elizabeth Edward's passing in December 2010. I keep going back to this post periodically and added and deleting thoughts. Each time I am usually prompted by another friend's advancing health issues.

Elizabeth Edward's death provided us new lessons in death, cancer, dignity and cancer treatment. She was educating to the end when she announced that her treatment would no longer be productive. She joins a list of famous women who have helped make cancer more understandable and less fearsome.

Real people get cancer as do famous people. But often we don't understand what they are going through unless we have been there ourselves. But even then, its can be difficult to understand as the treatments vary as do reactions to them. Some people tolerate them better than others. Not all lose their hair. Some find they react to the treatments in bad ways. I have friends who could not complete treatment because they were allergic to chemotherapy drugs or could not tolerate them for other reasons.

I have numerous friends who have succumbed to cancer since I started writing this post. Last weekend I got together with a breast cancer friend and she said that all her friends with cancer were gone, including the too young ones. There are feelings of guilt when our friends are gone. Why them when, before cancer, they had so much life left for them?

But as each of friends go, we learn from how they lived their life and die. We may not agree with them - why didn't you get your affairs in order earlier? We may admire them for what they accomplished. But we always still miss them.

Right to choose

Would you move to Oregon if necessary? I would.

I hope that you do not disagree with this woman's choices but I completely support her. She has a very unfortunate medical diagnosis at age 29 and has taken steps to live her life as best she can. She has gotten the medication she needs to die with dignity as she wants. She isn't rushing to use it but is much more relaxed knowing that when the time comes, she will be able to choose.


I am a firm believer in DNR's and palliative care. But sometimes I think it doesn't go far enough. First of all with a DNR, someone else is making the decision on your body that it is time to stop treating you. Second of all, what if the DNR happened after months of agony? Instead of at the beginning of all the agony. Palliative care is wonderful but it can only do so much. What if your body develops a resistance to all the pain medications? Where would that leave you?

I would move to Oregon in a heartbeat if necessary.

Before you die

Don't go with regrets. The top five regrets of the dying are (according to some survey or another):

1. I wish I had the courage to live a life true to myself instead of what was expected of me
2. I wish I didn't work so hard
3. I wish I had the courage to express my feelings
4. I wish I had stayed in touch with friends
5. I wish I had let myself be happier

You may or may not agree with them all but the point is don't go with regrets. Its not a bucket list but more ways to be happier.

I think I am doing pretty well with these. I am not sure I will have these regrets but I want to make sure I don't have any regrets. I guess the point is to be happy in your life so you don't have regrets.

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.

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.

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.

A doctor question.

Here is an interesting question. A woman wants additional treatment for her husband who is failing rapidly from cancer. She thinks there must be something more that can be done. But the doctor knows there isn't really anything left to prolong his life.

I am sure oncologists and other doctors are put into this position by well meaning family members countless times. There is a point where the treatment of the patient extends to the family members, especially the primary caregivers. They do not want to lose their loved one and are grasping at straws for anything to save their life.  

The article I liked to is from the physician's point of view - what should they do? Where do they draw the line? How do they keep the patient as comfortable as possible and keep the family members happy?

It is a tough question. I would not have to be the one to have to answer this. I can also see me being the one grasping at straws and asking the doctor isn't there something else to try?

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.

Why wait?

We all know that eventually we will die. There is no way around it. Yes you can freeze your body and keep it in storage forever but you are still dead. Sorry. The Cornered cartoon above ran yesterday and if you see it on GoComics.com the comments are pretty evenly split about wanting that pharmacist or wanting to avoid the pharmacist. Some people just commented 'sick'.

Recently I also read an article on the controversy surrounding doctor assisted suicide. Oregon law currently allows it but patients must be over 18, have a diagnosis giving them six months or less to live, make the request to their doctor twice at least 15 days apart, and have another doctor confirm their diagnosis and prognosis. People are split on this as well. Some think its morally wrong and others are all for it.

People for years have been saving up their prescription pills and using them to commit suicide when faced with a nasty diagnosis/prognosis. This just legalizes the process for those who have been told you will die a nasty death in a few months. But others without the diagnosis/prognosis will still save up their pills... But that's another blog post.

I think if I was told I had stage IV cancer, have tried numerous treatment protocols and nothing worked, and was told that's it - nothing left to try. I would want the option of being able to say "I don't want to wait and want to die on my own terms". I would have to be very convinced that death would be painful and nasty and involve a lot of suffering. I realize that this might not be for everyone. But this is a country of choice. People live their lives the way they want, Democrat, Republican, Green Party, Independents, etc, they go to church or not, they have children or not, they practice their own beliefs, are vegan, vegetarian, or omnivores, and many other choices.

Why can't we also have the choice not to have to wait if we are so far into an irrevocable process that will only end painfully? Ask anyone how they want to die and I think all will agree they want it to be fast without a lot of suffering. If you are able to skip the suffering and the long wait, why not? I realize this is controversial but I would like to see this legal.

Dying, death, and dignity

In case you missed it, the latest overblown, over hyped, news story is that Elizabeth Edwards has ended treatment and is surrounded by family at home with no further treatment available. I don't understand why people feel the need to rehash this and comment, and discuss, and reanalyze her whole life including her husband's political career and infidelity. Please leave her alone and let her die with dignity, on her own terms. Her wishes must be respected at this time.

When it is my turn (in the very far future), by then I will have written out what I want so no one can overstep them. You can be sure it will include lots of privacy and dignity and painlessness. It will include those who I choose - but definitely my husband. It is my dream that we will play scrabble together, tell jokes, and laugh until the end surrounded by flowers. But it will also include dignity.

There is nothing more dignified than death. We will all get there sometime. It is not a time for questions that cannot be answered. It is not a time to think of regrets. Let those at the end of their life have the dignity.

Its a different perspective

There is a 20 year old woman in the US who has had cancer for ten years of her life and has now been told that she has between six weeks and four months left. Her friends threw her a bridal party complete with a wedding gown and it will be featured in an upcoming issue. She doesn't appear to have a boy friend who she might be marrying but I think she just wanted the party.

On one hand, it seems a bit silly. Why go through this party stuff if she's not getting married? But on the other hand, if it is something she wished she could have done - get married that is - there is nothing wrong with it.

I think if someone told me I had between six weeks and four months, I would start making a list. Often people just die with no notice. You could get hit by a bus, be in a car or plane crash, fall off a ladder, hit your head diving into a pool or lake, or any number of reasons. You have no time to get your affairs in order and figure out what you want to do before you die because you don't know you were about to go.

If I knew I had at least six weeks, I would start planning. I would plan my funeral and figure out what I was going to be cremated in. I would figure out what I wanted done with my ashes. I would go on a few trips. I would walk on the beach as much as possible. I would forget about my diet and eat fried clams as often as I wanted. Ice cream every night as well. Sit out in the sun with no sunscreen - I'm not going to be around long enough for wrinkles and I might as well have a nice healthy tan. If it was winter, maybe I would go skiing one last time. It would not matter if it made my back hurt. Because I would not have to worry about doing long term damage. I could have a lot of fun.

There's a country music song that talks about living every day like you were dying. Hmmm... its all a matter of perspective.