Is there evil in the world?

My son just mentioned in conversation that there are no villains in the world. Everyone is reacting to some kind of motivation as opposed to having an internal well of malevolent motivation. I suppose that's true but there have been times when the evil perpetrated by someone was so obvious that I've wondered how it could go unchecked. I am terrified of the hate mongering spurred by Trump. My experience with unbridled power matched with paranoia and a total lack of conscience was on a much smaller, personal scale but the skeletal structure is the same. It has to be recognized for what it is and it has to be stopped.

I had a principal once who was so insecure that she purposely destroyed the administrators she inherited from the previous administration. The longer she was able to get away with the abusive behavior, the worse it became. Normally when we do bad things to other people there are strictures in place that stop it from going too far. If no barriers appear, the behavior snowballs until it is completely out of control.

I wrote a grant for an after-school program. I didn't think anyone else would devote the time and effort it would take to run this program for the amount budgeted for a director's salary so I gave up my part-time job teaching graduate classes at a nearby college, which I had done for the past seven years and took a $2000 cut to manage the program. I'd managed a much smaller after-school program and knew how hard it would be. Also one of the conditions of getting the grant was naming a director that had previous experience. I was the only one in the district that qualified. Naming an unqualified director could have lost us the grant. Even though I would have lost $2000, and worked a heck of a lot harder running the program, the job was taken away from me with the accusation that I had written the grant to "line my own pockets."  I wasn't hurt that the job was taken away from me because it was way too hard, paid too little and I could make more money doing a lot less staying with my part-time teaching job. What hurt was knowing that pure malevolence had spurred the action and the accusation that went with it. She had told people that the only reason I had written the grant was to provide a part-time job for myself when she was the one who had asked me to write it. What causes people to be so evil? I spent hours of my own time, totally uncompensated writing a $300,000 grant for an after-school program. I did not want to give up my IU job to run it. There was so much jealousy over the fact that I had actually been awarded the grant that the administration did all it could to make the program fail. It was just such a clear-cut example of good and evil I could feel an Aesop tale coming on. 

The negativity and terror that filled my last 2 years at that school were totally illegal and if I had had half a backbone, I could have sued for harassment or bullying in the workplace. That just wasn't done back then. Getting away with the behavior she inflicted on one of the assistant principals the year before, what she did to me and what she did to the other assistant principal she went after once I was gone, reminded me of the Niemoller poem that went around when Trump wanted to ban Muslims.

First they came for the Socialists, and I did not speak out—

Because I was not a Socialist.

Then they came for the Trade Unionists, and I did not speak out—

Because I was not a Trade Unionist.

Then they came for the Jews, and I did not speak out—

Because I was not a Jew.

Then they came for me—and there was no one left to speak for me.

Niemoller

Perhaps it seems a bit dramatic to compare this to my little situation but I found little comfort in the fact that a man I had counted a friend, turned on me and then was next in line to be destroyed.  I understand because all my "friends" could have lost their jobs if anyone had said anything. Because no one did object, it was the same as giving tacit approval, which caused the abuse to grow everyday. I wondered how German soldiers could become so brainwashed that they could rationalize treating people like animals but it is not all that complicated. It happens easily, quickly, and with majority approval.

My little vignette is but a tiny example of what can happen to a country when hatred and paranoia lead us to rationalize behavior we know is not right. I am terrified at the number of people who back Trump and how easily he can manipulate thousands of people to forget the Constitution and the Bill of Rights. What happens in a fishbowl can happen in an ocean. In small instances and in large, people of conscience have to stand up to ignorance, paranoia, hatred, prejudice, vindictiveness and yes, evil.

I can't cure you

I CAN’T CURE YOU

A few months ago I had a clean PET scan. That gave me a 3-month hiatus from chemo. Three months later my next scan showed cancer on my liver. I knew 2 things then; 1) my hope of our “no holds barred” plan of attack (chemo and surgery) didn’t work. When my oncologist saw that the cancer was back, she said the words I dreaded, “I can’t cure you.” 2) The cancer was in an organ. It was no longer on some innocuous breast tissue that I didn’t need to survive, it was on an organ that I did need to survive and it was an aggressive cancer.

Luckily, I had an option other than chemo. I had been receptive to chemo, which put me into that small group of 30% to 40% of people who were. The other 60% were SOL. Triple Negative Breast cancer is the deadliest form of breast cancer. However, chemo kills everything and it damned near killed me last time. I really didn’t know how many more times I would survive a chemo regimen. Nor did I want to put John through that again as I was completely dependent upon him.  Luckily my oncologist had trained at Moffitt Cancer Center in Tampa and had maintained close ties. She was able to pick up her phone and get the head of clinical trials dealing with triple negative breast cancer on the phone and set up an appointment for me the next week.

There was a list of criteria a mile long that somehow I met. They only want healthy people in their studies whose only malady is the breast cancer so that they can make assumptions regarding the treatment without having to wonder if factors from other illnesses played a part.  I had to have had 2 occurrences separated by a period of being cancer free, I had to have had at least 2 chemo regimens, I had to have had surgery at least once and I had to have had healthy liver, kidney, glucose and about 100 other blood tests that scored in an acceptable range as well as be within a height, weight, age, EKG, CT, MRI and bone scan score range. I qualified in every area but one. My PREGNANCY test came back as inconclusive. Obviously I could not be pregnant and the retest proved it but we got miles out it with all the nurse jokes, FB retorts and watching John strut around the ward hooting and swinging his fist in the air. We now have to refer to him as “the bull.”

After much waiting around, taking a nausea pill and steroid, waiting around, eating lunch, and more waiting around, I was finally allowed to take THE PILL. I was then observed for 4 hours for side effects. We had gotten there at 9:00 and didn’t leave until 7:00 PM. They gave me two vials, each filled with a steroid, a nausea pill and the test pill. I’m to take them every Wed and Fri. On Tuesdays I go to Moffit for testing and a complete exam. I even get a thorough eye exam. In 8 weeks I get the CT, MRi and Bone scan again. If the cancer has stopped growing, I will get this drug for the rest of my life unless it finally becomes an approved drug, which I can then get through regular means. The doc said it would probably take 10 years for it to be available to the public and that was one of the great perks of being admitted into a study – you get drugs 10 years ahead of everyone else.

IF IT WORKS for me, it will only harm the cancer, not the rest of my body, which in effect is a cure to me. While the cancer will never be completely out of my system, this drug could keep it from ever growing any more and with natural cell death, the amount of cancer could be reduced. Since I’m in the study I will get the drug for free until it becomes FDA approved.

If it doesn’t work for me and the cancer continues to grow, I may qualify for another clinical trial that will open sometime in the next 2 years and go on chemo in the meantime.  If I can’t get into the 2^nd trial then I am back with regular chemo, which will extend my life as long as my body can put up with the collateral damage.

In the last 4 years I have gone from hearing I have cancer to being told I was cured to being told I might be cured to being told I couldn’t be cured to the nebulous promises of clinical trials. I believe in positive thinking and choose to think this drug will work for me however, I have been on such a roller coaster, I’m afraid to let any hope in.  This is serious shit. I’ve made a will, bought insurance, made final financial arrangements and taken as pragmatic an approach as I can to the whole business of dying and its consequences. My faith has been tested. I have been forced to be more real than I have ever been in my life. Realizing that everything you have ever known, every memory you have ever stored, any plans for the present or future, even the deepest ties to other people will all be gone.  You simply cease to exist and life goes on without you. People will be sad for a while, and you’ll be missed for a while but life must go on and you will no longer be a part of it.

Strangely, my reaction to that was not to drop everything and party or to even allow myself to be self-absorbed. I regretted that I had not done more for others. The first thing my mind went to when it began to occur to me that I might actually survive this was that God had spared me for a special job. My faith returned in force. I wanted to teach in some poor country, work in an inner-city school again, buy a house for maladjusted students so that they could get away from lousy home conditions and concentrate on school. The next time I faced death, I wanted it to be with a better track record of service.

It no longer was a factor that I didn’t know what life after death would be like. I didn’t have to understand the trinity or the Bible or any church laws.  I only knew for sure that there was a God and that I had an obligation to him/her to use whatever gifts or talents I may have to help others.  I have no idea what I can do at my age with my health track record. That is something God is going to have to make clear.

One amazing thing is that John is actually considering a move to Tampa. He wouldn’t even talk about it before but at dinner tonight when David brought it up, he started to consider it. He said he had originally opposed it because he thought we would be encroaching on David. However, since David was pushing for it and it now seems we will have a lifetime relationship with Moffit, he actually said he saw more pros than cons.  I think that some of it might have been the effect of just having left his 2 adorable grandchildren and having a better realization of how important it is to be around them as much as possible.  David is dating an delightful girl and I don’t want to jump the gun or put any pressure on anyone but I think even he is starting to think about settling down and he actually wants me around!

This is all far down the road but it is impossible to relay how far I have come from first learning I had cancer in my liver to taking a little pill today that could totally change my life around. I guess I’m the kind of person that God has to take a brick to to get me to listen.  OK God you have my attention. What do You want?

The blog stays, I however...

Sharing my thoughts on having cancer and dealing with end of life issues does not mean that I will be as free with information about other people as I am candid about my process. Since I just got some news that would be crucial in the process to anyone one else who may be aided by this blog, I have decided to keep it open.

After my surgery that found tumors on the chest wall and in lymph nodes, a PET scan was taken. It showed some activity on the liver that was verified by an MRI. I know what this means. Once the cancer attacks an organ, it reduces the amount of time you traditionally have to live. I have opted to go into a clinical trial if I qualify as opposed to getting chemo that may kill the cancer in the liver for a while but will never cure it. The clinical trial may produce worse results but on the chance that it may produce better results, I'm giving it a shot. In every single thing I read or watch, cancer that has spread is synonymous with a death sentence. I've done everything I can to get my finances, property, and insurance policies in shape and communicated. I've even cleaned all the closets. However, knowing something and accepting it are two different things.

I find myself getting caught up in a TV movie or memories I relive when I hear a favorite song. After the movie is done or the song is over, I get hit in the face with reality again. The world looks the same as it always has but it no longer includes a place for me. I don't feel sick like I do when I'm in the middle of chemo so what is playing in my head doesn't fit with my sense of reality. I look normal (except for the god-awful scar running across my chest where a breast ought to be). I actually feel good. I have more energy than I have had in a long time. I've been able to get things on my "to do" list done. The house is finished. I still have some things to go through in the garage but overall, I've taken care of most of the things I needed to get done. Now what do I do?

All I have ever known how to do was to get up, pack as much into a day as possible and go to sleep. I habitually have packed too much into every day and was sleep deprived for most of my life. Sleep has always seemed such a waste of time to me. It never helped me to cross anything off of my "to do" list. Now that I can sleep all I want, I don't want to for fear I am wasting some of the precious little time I have left. However, I don't really have anything productive to do with the time I'm awake.

I realized that we all seem to live by trying to deal with whatever is happening today in conjunction with long-term goals. This whole system falls apart when you no longer have any future goals. Organizing stuff, worrying about money and insurance policies, and trying to budget everyday expenses all depend upon how long I will live.  It would be better monetarily to die before next June when my $200,000 policy comes due. If I'm going to die sometime, why not do it as soon as possible to maximize insurance money? I really don't think I would value a few extra months more than I would knowing that John and the kids would be taken care of.  You really don't get any practice in trying to live with no future until it's too late to get good at it. Even lifers in prison develop a plan for the future, even if it has to be a future in prison. What does it mean to make the best of your last few months or years?

This is truly an exercise in living in the moment. The only value today has lies in how today was lived. There is no reward for delayed gratification. If I can meditate, pray, exercise, get outside, go through the mail, keep up on bills, clean something and make love to my husband, I've hit all cylinders. That's a good day. There are certainly other scenarios that also qualify as a good day such as making it to the beach, taking the boat out, visiting family and friends, doing something new or seeing someplace we've never seen before. Sitting around being depressed is not an option.

Nevertheless living in a state where there is no future is truly a strange thing to experience. Part of everyday experience is long-term planning, looking forward to something, expecting to see grandchildren grow and enjoy retirement with someone you love. John and I can do whatever we want now but only for limited periods of time as our schedules are tied to doctor appointments and therapy. We are also restricted by how I feel. 

John has Parkinson's. Before the cancer, I thought about how I could help him get the most out of his immediate future before the Parkinson's limited his physical abilities. Now I see a man, who doesn't even acknowledge he has a serious disease, do all he can to take care of me.  I won't be here to take care of him. I worry a lot about what his future will be.

I simply don't know how to live like this. By the time I learn, I'll have run out of time. I wish I could figure out a way to do research on this time of life. With all of us baby boomers facing death in the next 20 or so years, it would be important research. I could write a book, "How to live without a future," "The Last Blog (parody on The Last Lecture)," "This is it - face it," "Top 10 steps for life while you wait for death," "This is how to live now."  I'd buy any and all of those books from someone who had enough time to figure it out so that I didn't have to waste any of my time figuring it out.

I had to go to the emergency room a couple of weeks ago because of an excruciating pain in my groin. I assumed it was a kidney stone because people describe the pain as worse than labor. It truly was the worst pain I had ever felt. I thought it was an appendicitis, or kidney stone, or part of an IVC filter that had broken off. The PET scan I had taken of my liver showed some metabolic activity in the groin area but stopped short of taking a big enough picture of the area for diagnosis. Most likely it is another site of metastasis. If that is what cancer feels like when it starts to devour the body, I want to be put out now. Most people I've known who have died of cancer are pretty doped up just before they die. Now I know why. When my friend Toni died, her kids where running all over town trying to catch the visiting nurse to get more pain meds from her as they didn't have enough at the home to ease her pain. That is my biggest fear. I would love to die at home but if I go to the hospital, I will always have access to painkillers. Tough choice.

So this is how I live now. I ponder access to painkillers, insurance premiums, bills that will outlive me, parents and a husband who will need care and who will outlive me, the efficacy of clinical trials versus traditional treatment, and the realization that even enjoying the moment requires a promise of a future to avoid being drowned in the sadness of experiencing that moment for the last time.

I could really die from this.

October 24, 2015    

Oprah again tonight. On “Belief” there was a woman, “Donna” who was about my age.  Just before she and her husband were to retire, she was diagnosed with pancreatic cancer. Her story sounded so much like mine. I watched as she went from shock to disbelief to acceptance. She relied on her faith, on prayers, on her friends’ prayers, and on her religion.  When her cancer markers went down and she went into remission, she thought she had beaten the odds and the cancer. She threw a party to celebrate.

A few months later her markers went from the low 30’s to 12,000. The cancer was back with a vengeance. She went through chemo again. Gradually I saw her come to terms with the fact that she was going to die soon. How soon was a matter of months, not years. She lived 2 years. I have triple negative breast cancer and was told that I was cured after the first year of treatment.  Two years later my cancer came back with a vengeance and it had metastasized. My doctor told me that the average survival time was 2 years.

I heard the words but just didn’t believe that they applied to me. In watching Donna’s journey on “Belief,” I saw an abridged version of my story. Every PET scan leads me closer to accepting the fact that I am not going to beat this cancer. I can win small battles but it will win the war.

My ex-husband’s new wife, Loree, invited me to their home today to be able to spend some time with his son and his family. Sam and I had been married for 20 years. His son Ben was only 7 when we married so for several years, Ben was like one of my own.  I keep up with Ben's family through Facebook but hadn’t seen him since my daughter’s wedding 2 years ago. I so appreciated Loree’s invitation. It really speaks to the kind of person she is that she was willing to invite her husband’s ex-wife over because she understood that the connection between Ben and me was important. As I watched Ben’s two children playing in the pool and his wonderful wife watching over them, I leaned toward him and said, “You are so blessed Ben.” He said, “Yes, they are great kids.”  Ben is OK.  I saw that brave little boy that was determined to “take care of everything” when Sam and I started dating. He was so young and yet saw himself being thrown into the role of the “man of the house” after his parents divorced. I didn’t know how the divorce, my entering his and his sister’s life as a stepmother, and the arrival of my two children with Sam would effect Ben and Amy. I saw Ben and Amy welcome their stepsiblings with total love. They took on the big brother and big sister role with relish. Seeing Ben married to such a wonderful woman and have two such fabulous children put a satisfied and loving end to our story. What little part I may have played in his life can now be closed knowing he is happy.

All four children are successful adults. All but my youngest are happily married. I would be a basket case if I were leaving young children.  Knowing that they are all grown and happy makes it a lot easier to let go. My ex, Sam, is so blessed to have Loree. They make a much better pair than we ever did. I can leave knowing he is happy too.  I worry about my parents, as it is never an allowable thing to let a child die before his or her parents. They have been such wonderful parents; it just isn’t fair that they should have to suffer through this loss.

My poor husband really got the short end of the stick. I was diagnosed four months after we met. That was four years ago and he has taken care of me ever since. We will be celebrating our 2^nd anniversary on Feb. 13, 2016. I was in remission almost 2 years.  It was the only time we have had without the big “C” hanging over our heads. To make matters worse, he was diagnosed with Parkinson’s disease. I was supposed to be the one who would be around to take care of him. He has two sons who will make sure he is OK but I worry about him being in a nursing home alone.  I genuinely hope he remarries, not only to have someone to care for him but also because he is such a great husband and has so much love to share.

I was also supposed to be the one to take care of my parents. I see the worry in their eyes as they try to figure out what they will do. They don’t want to go to a nursing home but without me, they don’t have much choice. I know it’s ridiculous but I feel so badly about letting them down after all they’ve done for me.

I’ve spent many hours trying to make sure that our finances are in shape and that my husband and kids will be taken care of financially. There really isn’t anything else I can do except to help with the emotional transition. I will be fighting the cancer for awhile but there will come a time when the chemo starts to kill me or when the cancer has spread so far that it cannot be stopped. There is always the hope that someone will come up with a cure but if anyone were close enough to do that in time for me, we’d know about it.  My best hope is to stay alive more than 2 years. My surgeon said that his sister-in-law has made it 6 years with triple negative. Maybe in that time frame, there could be a cure.

My biggest sense of loss lies in not being able to know my grandchildren. I was so blessed with the love of my grandma. I have looked forward to filling that role in the lives of my grandchildren. All a grandma has to do is love. Their parents have to raise them; from me all they get is total, unconditional love. I know what an important part my grandma played in my life. With all my heart, I wanted to give that to my grandchildren.

From the TV I hear “From the moment we are born, we are another day closer to our death. So how can we, in the process of dying, live?” Oprah states “death makes life matter.” For most of my life I have numbly struggled through the years working. Maybe a few years of truly living is better than many years of simply making it from day to day. I know that I am much more aware of time. Each day is precious.

In the show, “Donna” has faith in the prayers that are being said for her and believes God will heal her. She lives a lot longer than she was supposed to but she still dies. I can’t get past thinking that God gave me the cancer for a reason. Why then would he take it away?  Like Donna, I thought I was cancer-free too. Like Donna, it came back.  Chemo makes you look sick (and you are) but once you give it up, you look perfectly normal until the cancer inside of you grows to the point of invading and killing a vital organ.  The main pain of cancer comes during this time and lasts until death. I can be doped up during this time and pray that the cancer kills quickly. These are the steps of cancer: diagnosis, treatment, remission, reoccurrence, treatment, inability of treatment to conquer the cancer, accepting the inevitable, letting the cancer kill you, doping the pain, death.

I can accept the fact that we are all going to die sometime. I can accept dying from cancer. I am struggling with the timing.  I want more time with my husband, my children and my grandchildren.