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.  

Cancer isn't the worst thing.

Oct. 23, 2015

Oprah is figuring heavily in my life all of a sudden. I had never heard her story before. She was born out of wedlock and unwanted. Neither her mother nor father wanted her so her grandmother took her. Oprah grew up knowing her parents did not want her but she did know that her grandmother loved her.  She was raped as a child, got pregnant at 14, and had the baby who later died. She says she felt no connection with that child which helped her to understand how her parents felt about her.  She also said she never wanted children because she was never willing to sacrifice for a child. Children take a lot of sacrifice. I’d encourage everyone to read her whole story as well as the life story of Maya Angelou. The “God” things that happened to these two successful and tragic figures are astonishing. The message from both of them was that we accomplish great things as soon as we realize who we are and what we were meant to do. Her magazine this month is dedicated to being authentic.

I would love someone who knows me well to have the guts to tell me who they think I am. I don’t know how I do it, but I tend to intimidate people, be overly blunt, over-do everything, be pragmatic to a fault and bulldoze my way through difficult situations.  Considering that I am a professional counselor, my personality doesn’t fit the profile. I have always thought however, that more counselors should be like I am. Some people misuse counselors treating them as paid friends who have to listen to their clients talk. Don't get me wrong, talk therapy can be very effective but as a school counselor, I don't have that kind of time. My approach to counseling is more confrontational and orientated towards problem solving. As an adjunct college instructor, I taught my graduate students to use Brief Therapy.

One of the articles in the Oprah magazine talked about how being authentic can mean different things at different times. There was a period in my life when my principal openly and brutally bullied me.  She was extremely insecure and worried about the administrators she had inherited from her predecessor. She got rid of one of the assistant principals the first year. I was next and the second assistant principal was put back into the classroom after I left. All the other administrators saw what she was doing and jumped on her bandwagon for fear they would be next. It was the first time I had ever encountered someone who seemed to have no conscience and no problem being a bully.

I was making good money and knew that other counseling jobs would pay much less. I also wanted to stay five years as my teacher retirement was based upon my five highest income years. When I wouldn’t leave voluntarily, she turned up the heat and made my life a living hell.  I got so flustered by what she was doing that I was afraid to say anything in my defense, even when the behavior was totally ridiculous. I wished I had had a way to cut through the intimidation and fear and force myself to think rationally in the middle of the bullying rather than long after it was over.  The following template may not apply to everything but it can be tweaked per occasion.

Example:

I was pulled into the principal's office to face her and two assistant principals. I was yelled at for going to a counselor breakfast put on by a local college. I've been a school counselor for 20 years and keeping my contacts at this college was crucial as this was where we sent most of our students. These breakfasts are also where the college covered new admission policies, new programs and majors, changes to the application, new dorms and tons of other information. I had not missed one of these programs in 15 years. Not only was this meeting important, I had obtained permission to go from the principal.

I was accused of not being a team player by putting that breakfast in front of my responsibilities at the school.  Apparently, there had been a drug raid with dogs that morning. The principal and one assistant principal were at a meeting. This left only the other assistant principal to handle the school, police, dogs, kids, and teachers.  What I did not have the guts to say was that while all of them knew about the drug raid, no one had told me. I had also gotten permission to go to the breakfast from my principal. Their accusations made no sense and if anything pointed to the fact that the principal was negligent for not making sure more administrators were there. Why did she give me permission to be gone and take an assistant principal with her to a meeting when she knew there was going to be a drug raid? Since all three of them knew about the raid, I would think that they should share the fault. However, all three of them attacked me for being selfish and ignoring my obligations to the school. I wish I had had the instrument below instead of being so intimidated by their behavior, which happened in some form every day.

There can be multiple answers for each question.

1. Who is upset?  Principal and 2 assistant principals

2. What are they upset about? Only one administrator was here to handle the school and the drug raid.

3. When did it happen? At a time when I was at a college breakfast and 2 other administrators were at a meeting.

4. Where did it happen? The meeting for the administrators took place across the street in the district office, my meeting was downtown, and 1 assistant principal was left at school

5. How could it have been avoided?  1. Principal could have not approved my meeting and told me it was because of the drug raid.   2. The three of them should have made sure the school was covered if they did not want to tell me about the raid. 3. The assistant principal who was in the meeting across the street could have come back to the school.

6. How do we make sure it doesn’t happen again?  

1. Rather than trying to find ways to make me seem incompetent, treat me as a fellow administrator and share information with me. If I am to be expected to carry administrative responsibility, I should be at the administrative meetings.

2. The principal should carry her phone/calendar with her at all times so that she doesn’t give permission for someone to be away from the school when he/she is needed. I asked her why she let me go if she knew there was going to be a raid and her answer was that she couldn’t remember everything.

If I had used this simple template to help me keep my cool, it would have been obvious that it was not my fault and if anyone, it was fault that should have been shared by the three of them. Obviously, they already knew that and were counting on the fact that having the 3 of them gang up on me everyday would eventually get me to quit.

The point of all this is that while I know who I am most of the time, under extreme circumstances, I become someone else. The assistant principal whose turn would come the year after I left, used to be a friend. I understand what fear of losing your job can do to your sense of right and wrong. He knew what he was doing and yet he was able to convince himself that it wasn’t wrong. He didn’t get fired the next year but he did get put back into the classroom. I didn’t get fired either but I was transferred to a middle school geography position. I did appeal to the superintendent but was told that he could not override a principal in favor of a counselor. I documented everything and probably could have sued for bullying, intimidation and harassment but if I was too beaten down to fight back over each incident, how could I have coped with a lawsuit?

Learning to be authentic means knowing who you are under all circumstances – good and bad. People comment on how well I am handling cancer. Odd isn’t it that it is easier for me to handle a terminal disease than it is to handle daily bullying. I felt more powerless then than I do now. What does that say about me? All I could lose then was my job, cancer can take my life. Maybe I still don’t think I’m going to die. I know I can handle chemo – it’s not fun but doable. I could not handle people purposely trying to hurt me everyday. It made me a better counselor once I understood what bullying could do to kids.

My beliefs v. your beliefs

Oprah Winfrey – Belief    Oct. 22, 2015

I’ve been watching Oprah Winfrey’s series on Belief. It has been so interesting to recognize that the most bizarre rituals and practices of the world’s religions are no more bizarre than the Catholic culture I knew. We attend a ritual that turns bread into a body and wine into blood and then we eat it! We don’t eat meat on Friday and used to fast before Communion. We used to go to hell for missing mass on Sunday. Babies who died before being baptized went to Limbo and sinners who died but didn’t quite deserve hell were sent to Purgatory. We had prayer cards that if read, could knock out a certain number of days for a loved one who might be in Purgatory. Sins were broken down into mortal and venial and regardless of how you had lived your entire life, dying after having committed a mortal sin (like missing mass), would send you straight to hell. I have a distinct memory of having gone to confession then gone to mass and having received communion. For just a few minutes after communion, I was sin-free.  So much planning went into enjoying a few minutes of sinlessness. 

Being raised mostly by my grandmother, who kept many of the customs she grew up with in Italy, added a whole other level to some of the strange Catholic traditions I learned. Catholic grade school, high school and college, Catholic family and extended family and Catholic friends and neighbors all kept me insulated and embedded in all things Catholic. While there is a lot to be said for the wonderful education I received and the strict guidelines for behavior that kept me out of a lot of trouble, I felt like I had stepped off of a cliff when I got a divorce and found myself outside of the most powerful force in my life.

At the time I divorced, I was forbidden to receive Communion. In order to get back in to the church, I had to go through an extensive and expensive legal process in the church. I started the process but when my advocate started to explore ways to circumvent Canon Law in order to get the annulment, I lost all faith in the Catholic Church. How can you fool God? The church has since changed its stance on divorced Catholics but that presented a problem too. The church changed its stance on a lot of things that at one time represented eternal condemnation. What used to send you to hell was now OK.  How can you trust a religion that can be that wrong about itself?

I began to study the Bible as opposed to the Catechism. After 6 years of Bible Study Fellowship, I kept my Christian faith but realized that there was a lot about my Catholic faith that had left indelible marks on me and those marks would have to go if I were ever to find a genuine belief. Over the years, I’ve questioned almost everything. As I think about dying, the issue has become a little more acute. What has remained is a history between God and me. My belief was bestowed upon me, nurtured, imbedded, enforced, and reinforced. It was all I ever knew and so it was something I could not leave. It had always been a part of me. However, all the trappings of the faith were discarded. There hasn’t been a denomination yet, that I have totally accepted.

When I look back at some of the silly things I used to do as part of my religion, the silly things I saw on the Oprah special were easier to understand. We try to find ways to persuade God to answer our prayers. Whether we jump from a cliff or climb stairs on our knees, fast, perform painful penances or twirl like a dervish we use the culture we know to praise our God and ask for help.

More important than how we worship is why.  I think it is a combination of two things.  I think people often experience a feeling of there being something else whether through déjà vu or coincidence or a sense of something more.  People also often experience a sense of helplessness.  I might just be talking to myself but I feel like I am talking to God and that He hears me. Perhaps I have my God because it is terrifying to think that what we see is all there is.  Perhaps what I feel is a universal need and that is why religion exists in all cultures. I cannot prove my God to anyone and while I acknowledge a human need for there to be a God, I don’t see that as a reason to believe there is not a God. I have personally experienced enough “God” moments to know there is something beyond me. Apparently, a lot of other people have had similar experiences. There’s a lot of faith out there. How that faith is expressed probably depends upon where you were born, what your parents believed or any number of random encounters that have led to one faith or another. Regardless of what you call your God or how you worship your God or how you implore your God for help, it is not silly, it’s just different from what I know.

Family, grandchildren and love

I have to apologize to those of you who faithfully check this blog to see if there is anything new. I have waited until the spirit moved me but now realize that I need to at least make a weekly post to make it worthwhile to visit this site. I have also used the excuse of being too busy to post because I need to use every minute I have any energy to get things done around the house. While this is a legitimate excuse, it is not conducive to a blog.

 I finally felt well enough to travel and spent a week visiting my parents, relatives and friends in Elkhart and South Bend. It wiped me out but was sooooo worth it. Being with aunts, uncles, cousins and my parents made me feel grounded. As crazy as the rest of the world may be, these people still know what is really important and because I was blessed to be raised by and with them, I too remembered what was truly important and what was not. Family, faith, love and even sorrow are the things that define civilizations - or - maybe just the incredible group of people I get to call my family.

There is first an outflowing of genuine and deep love. As the years go by, that love is enriched with memories and the wisdom of age. It was a little weird knowing that so many people made an effort to see me while I was home because they wondered if this would be their last opportunity. Nevertheless, the love we feel for each other is followed by the joy of being together again. My parents are 86 and one uncle is 90. The thoughts of dying are often the subject of conversation. I am now part of that discussion. Cousins my age are playing with or awaiting grandchildren. I, most likely, will never know mine. I am so envious of those who get to know and be a part of the lives of their grandchildren. No one will love them like I will or take as much joy in them. It's not fair that both they and I will be robbed of such a special love. My daughter has student loans to pay off first and my son (in the same financial position) isn't even married yet. When I die, they will each get $30,000 in life insurance money. It's too bad there are no "reverse" mortgages on life insurance policies like there are on home mortgages. 

I truly believe that I will know these children after I have died but they will not know me. I know how special the relationship was between my grandmother and me. I don't know who I would be without having had that relationship. I just wish I could be that source of unconditional, pure and intense love for my grandchildren.  If God chooses to let me survive this disease, I believe it will be for my grandchildren and the immeasurable love I will get to lavish on them.