November 17, 2011

The ups and downs of remaining time.

A day in the life. A week in the life. What is it like to live each day knowing you are dying prematurely, that there is a clock ticking away somewhere with your name on it? I'm sure a lot of people would like to ask me that sometimes, but most are afraid to or think that it might make me feel uncomfortable. Well, let me try to answer that with some examples.

It seems that every week is different in some way. There is no "regular" or "average" week. I thought that when I stoppedd working, I would be sitting around watching a bunch of movies, playing the guitar, doing puzzles ... that sort of thing. But it hasn't been like that at all. I sleep a lot from the fatigue I suffer due to the cancer and the pain meds I am on, so it seems like there is never enough time in the day to do very much. At the same time, there is an underlying feeling that time is precious, and I feel guilty that I'm not making the most of it. I don't sit around sulking or anything like that, but I feel like I should be doing more.

This past summer, I did make the best of the good weather, the highlight being the several trips to our friends' cottage on Georgian Bay. I was also able to spend some sunny afternoons relaxing in our backyard, but maybe not as much as I would have liked. But the fall has seemed to go by quickly. I'm already 6 months into my doctor's estimate, but I am still hopeful that I will exceed the year I supposedly have left. The runaround that I got from my medical oncologist where I almost got back on cancer treatments was extremely hard on me and was a stark reminder of my situation. While I'm back on track, I still have a few remaining tests and procedures to do, most notably some radiation to a few of my bone mets to relieve the pain a bit. All about quality of life, you know.

So let's look at ths last week. Not a normal week, but it will give you an idea of the ups and downs of my life.

On Saturday evening, with the help of a couple of Red Bulls, I enjoyed an evening at a lounge celebrating my daughter's engagement with her fiancé, his family, our family and their friends. It was a wonderful time and I lasted until almost midnight, pretty good for me and very worthwhile. I am so thrilled for her and I love our future son-in-law. Of course, I spent most of the next day recovering, but I was prepared for that. A happy, normal father for a while. I loved it and really was happy!

Then a doctors appointment on Monday morning to discuss radiation, another on Tuesday morning with my orthopedic surgeon to talk about my back and then again on Wednesday afternoon for targeting scans in preparation for the radiation. All this while getting used to my significantly higher dose of pain meds. On the first two days, Dianne and I took the opportunity to do some Christmas shopping - a normal thing to do - fun - but by mid-week it started to get to me. The doctors' visits, the trips downtown, the parking ... all of the things that have happened to me and that I have experienced throughout my cancer journey, they all cause my stress level to go through the roof and the depression descends on me like dark volcanic ash. I spent the night in tears, feeling sorry for myself, feeling guilty for things I had done in the past, things I should have done, and that which I was doing to my family. I know it's not my fault that I got cancer, but I still feel guilty because it's me that is changing everything. My life is ending and Dianne's will never be the same. My children are losing a father, a future grandfather. And I am going to miss so much. It tears me up inside sometimes. All of it.

You might think that I fear only my own death, but I fear the death of my life with Dianne and with my children. I fear the challenges and changes that my death will bring to them all. But then, in my tears, I realize how much I will miss them and how much I will miss of life. All the things that I might have experienced. All the wonderful things that I will miss seeing. All the great new products that Steve Jobs left in play before he died. All the things I might have done. It can seem bleak, hollow, sad. And that's when I know what it really means to die. And that's what I fear.

So you see what it's like to be me. A week in my shoes that ranges from the highest of the high to the lowest of the low. It ain't pretty, but it's all I've got. And I will do my best to enjoy each day to the fullest. Each day with all it's ups and downs. I will laugh and I will cry and eventually I will die. As will we all. I just know mine is coming too fast and I am afraid.

November 10, 2011

Choosing Death.

I have touched on this topic quite a bit in discussing my personal justification for discontinuing further treatment in the face of an incurable, terminal disease.  But, recently, I have stumbled upon a number of articles and blogs that provided me with some further perspective on this important topic.

It seems that what makes this problematic is the fact that many doctors and patients just don't want to talk about death or life expectancy.  In some cases, the patient may not even know that there is no chance of a cure.  So it's impossible to make an informed decision when you don't have the right information.

A recent article in the Globe and Mail mentioned a couple of studies with some shocking results.  In one study, only 18% of 440 patients who were likely to die within a few months talked to their doctors about this fact.  Another US study found that 20% of family with loved ones in hospice were not told that the disease was incurable.  Dr. Gary Rodin,  head of psychosocial oncology and palliative care at Princess Margaret Hospital in Toronto, refers to a "conspiracy of silence" that existed for years amongst the medical community, such that doctors wouldn't talk to patients about death.  I know from personal experience that I have had to push for information on my own life expectancy at various stages of my treatment.  I could sense almost a reluctance to talk about it.  I understand misgivings around giving an exact time frame, but my psychologist was the only one who ever said, "You know that this thing is going to kill you."  Once my cancer returned and particularly when it metastasized, I knew for sure that I was going to die because of my own research.

Another perspective to this is that the medical community is trained and driven to treat patients to the bitter end (and bitter it may be).  It seems there is always something else to try, whether its a new drug, surgery or radiation.  Even though the odds of the treatment helping you may be very low (and even zero in terms of a cure), there is a tendency to offer it anyway.  And we trust them so much we go along with it, often suffering through pain and sickness and tremendous emotional stress, and ending up no better off or maybe only marginally better off.  Even if you thought you might get an extra month or two, would you want to be too sick to do anything with that time other than feel sick and maybe disappointed that you didn't get more.  Dr. Larry Librach, in a recent article in the National Post mentioned an old doctor's joke:  "Why do they put nails in coffins? ... To prevent the oncologists giving them any more chemo."

But it's not always the doctor.  Surely there is an onus on the patient or their advocate or loved ones to ask the questions that need to be asked.  If an illness is incurable, they need to know that and they need to have some idea of how much time they have left.  How unfair is it to not know you are dying and therefore not able to do and say the things that you really need to say and do?  And just like doctors may not want to "give up", many patients don't want to feel that they are giving up by not going ahead with anything the doctors could throw at them.  Even if the odds of the treatment helping are extremely low, there is a tendency to go for it.  People buy lottery tickets all the time with worse odds.  And I think that many of us have trouble letting go of the deeply ingrained belief that we are going to live forever.  We believe that we may be that one in a million case where the treatment delivers a miraculous cure.

In other cases, it may be the patient's loved ones who push them to undergo these additional long-shot treatments.  No one wants to let go, so if they hear that something "might help", they may pressure the patient into going ahead.  In turn, the patient will go along with it because they don't want to let their loved ones down. Or they don't want to be perceived as giving up when there might be a chance of spending more time with them.  In many cases, everyone is fooling everyone else and themselves but it is the patient who must endure the effects of the treatment.

I am often asked about hope.  In fact, I have the Japanese symbol for "Hope" tattooed on my inner arm.  When asked, I say that I have hope for a miracle cure but my real hope is that I will have a good death, with little pain, and that my family is well looked after when I'm gone and no longer there for them.  I also hope that everything I do before I die leaves a lasting legacy that can help others, because this is integral to my sense of the meaning of life.  I hope that I am remembered with love.

But it is hope that often drives a patient's decision to continue treating an incurable disease.  Dr. Lucy Hornstein, in a recent blog on huffingtonpost.com mentions a colleague who tells his patients that he is in the business of hope.  I think a lot of doctors honestly feel that way, but I think that making a terminal patient believe that another course of chemo or whatever might help, where "might" is a real long-shot, is actually giving them false hope.  And many of us are so beat down or scared witless that we grasp onto anything that smells of hope.  This just isn't fair.

So how to we address this?  What is the right way of looking at it?

First of all, doctors need to understand that patients don't need false hope and that they may be giving it to them by offering further treatments that may only give them an extra month or two (at best) but subject them to, at a minimum, discomfort and disappointment.  I believe the doctor's Hippocratic Oath includes a statement about "doing no harm".  Doctors may think they are satisfying the oath by trying everything they can, but they need to understand that side effects, pain, illness and even the emotional strain of hoping for something that isn't going to happen is, in fact, doing harm.  Rather than constantly trying to treat or even going so far as "heroic attempts" to extend life, doctors should be thinking about how they can help their patients understand that they are going to die and doing whatever they can to make their remaining time as comfortable as possible.  That's certainly what I want from my doctors and I believe that, given an educated choice, many patients would feel the same way.

And let's understand what the real choice is.  It is not a choice between "giving up" or "continuing the fight".  That's not a choice.  In fact, as Dr. Hornstein suggests, if a treatment actually has a good chance of curing you, no responsible doctor is going to present it as a "choice".  She says,  “... doctors only offer you choices when it doesn't actually matter."  If your doctor offers something and says "it's up to you", Dr. Hornstein suggests you just say no and go about making the most of what time you have left however short or long it is.  I couldn't agree with her more!

If you have an incurable disease and you have done all of the standard treatments, the real choice may be between accepting the fact that you are going to die and try to have a "good death", or to keep trying whatever the doctors can throw at you and have a lousy last few months or years.  That is the choice that I saw and that led me to the decision to stop further treatment.

Inevitably, all of this comes down to the need to get the idea of death out in the open and talk about it.  Even if you're healthy, you are going to die sometime and it could be sooner than you expect.  You can at least make it known how you would like to be treated.  Death is a natural as birth or any other major milestone of life so we shouldn't be afraid to talk about it.  If you have a terminal disease, it is critical that you talk about it with your doctors and with your loved ones so you can make the right choice for you.  Some people feel that even talking about end-of-life is a form of giving up.  Nothing could be further from the truth.  Not talking about it is giving up and going with the flow; just doing what the doctors want until they are sticking a breathing tube down your throat to keep you alive on machines.  I wouldn't wish that on anyone. 

Talking about death is important for everyone, especially for the patient, but even for those who go on living.  By talking about it, we can make good decisions and, ultimately, make sure that everything is said that needs to be said.  As Janice Van Dyck says in an article on huffingtonpost.com, "The power of letting go means no one becomes the victim of death."

No one should feel like a victim and no one should feel, or be made to feel, like they are giving up.   I've said this many times - you should have no regrets. This applies particularly when you choose a good death over a 'never say die' medical lottery.



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November 6, 2011

Back on track!

Never say never. Again! In the world of cancer and other terminal illness, things can change overnight - a single test result, a new shadow on a scan, a change in a number on a blood test result. You can go from happiness to depression (or vice versa), from moodiness to anger, from crying to bawling your eyes out.

Or from peacefulness to confusion. That's what happened to me a while ago (as I discussed in my post "Never say Never"). I was beginning to feel almost comfortable with my lot in life, with the knowledge of my shortened time on earth and all that goes with that. But then I was talked into "trying someone new", that much-favored approach to end-of-life care by doctors who never want to give up on the slightest chance that they can do some good. I didn't go along with it to try to extend my life by a month or so, or to grasp at some fleeting hope that I might be part of a miracle cure. As I said in my post, I went along in the hope that I could minimize the risk of breaking my back and all that might entail. But I couldn't hide from the fact that I was, in fact, treating my disease after I had decided not to anymore. I was okay with the flip-flop (you do whatever makes sense at the time) but I still hated it. The waiting, the decision-making, the tests, the hmmmming and hahhhing, the injections, the side effects. But I was going to do it anyway and I documented how it felt for your benefit.

And then it all changed again.....

I had a pre-booked appointment with my pain doctor in palliative care who advised me that the hormone injection I had received AND the new medication that they were going to try to get for me were contraindicated with my pain medication, methadone! On methadone, you have to be very, very careful In this case, I could develop a heart arrythmia and potentially have a fatal heart attack! Now that would sure as heck would ruin my quality of life! He seemed very angry that this had happened. My records clearly indicated that I was taking methadone for pain relief and I made sure to tell my medical oncologist at the time. I was thankful that I only had a 1/3 strength injection, particularly since I was significantly increasing my dosage of methadone. I was upset as well and wrote an email to my med onc telling her what happened, how surprised and scared I was, and how I would not be returning for my next monthly hormone injection. And forget about the new medication. That was it. I was finished. I will consult with radiation oncology about radiating some of the new spots to reduce the pain and I will consult with my orthopedic oncologist to better understand the risk of pathological fracture. And I will be very, very careful how I walk, what I lift, how I turn my body, etc. That's all I can (want to) do while I hope against hope that nothing breaks and that I am able to walk my daughter down the aisle next year.

While I was upset at what happened with the meds, I was surprised at the blanket of calmness that fell over me and how quickly it happened. I had been very aware of the added stress that came with the start of treatment, but I guess I didn't realize just how much it was bothering me. But it disappeared as quickly as it had come. I like this feeling! I'm relaxed and I'm not going to brood over what I can't do. I'm just going to do what I was trying to do before (quite successfully I might add)- which is to enjoy each and every day. Relaxed, but perhaps with greater vigilance?

Like I said - never say never!

A final note. Let's not forget the key lesson in this for all of us. It is incredibly important that the patient and their advocate be intimately involved in their care. Doctors can make mistakes. Communication may not be as seamless as we would like in a busy hospital. People, test results, drug interactions, etc. can fall through the cracks. The health system is not infallible and relying exclusively on a busy doctor who has dozens of patients and unrealistic demands on their time is not a safe thing to do. And even with the best of intentions and the most careful case management, mistakes can happen. We are only human, after all. So be informed, be watchful, and don't be afraid to ask questions or to challenge. It's your body and your life (or your loved one's) and you have every right to have a say in what happens to you. And if you think it's time to stop, just say so.

Be careful out there!

P.S. If you follow my posts via email, make sure you click through to dyingdigitally.com for Personal Updates and other news.