In response to that column, my friend Jan who has also been given the prognosis ”terminal”  – wrote - and has given me permission to share her thoughts with you.

FROM JAN 

This was great.  I loved the 4th paragraph.  Relationships…..begin to change and will keep changing.   That is life. 

I think the thing that has struck me  lately is that when I am thinking about relationships changing I think of that period of unease and resistance to change and that there is an evolution of change.  That change usually evolves into a different relationship. 

But when I think that I may not have time to see the evolution, I am sad and I want the relationship to remain stable and not go through that painful rebirth period because I may not have enough time to see the new relationship and the relationship will end midstream at a bad place. 

Then it struck me that death really doesn’t end the relationship.  But that you can let fear paralyze your willingness to embrace change.  And if life is change, you can choose to stop living before you die.

I’m so glad to see that section on not looking sick and a secret identity. 
That’s the irony…..a terminal patient wants to still be treated as who they are and yet give up so much of who they are in an attempt to hold on to who they used to be before.

I remember that Jim in one of his poems talked about needing to have people still have hope.  I think there is a real connection between wanting to have hope ourselves and needing to see that hope in other people’s eyes. 

The isolation comes in when we know we aren’t getting an honest response because we feel the need to withhold the despair we sometimes feel.  What a mess.

The part that touched me the most were the two lines about lack of praise
for expression of fear, guilt and sadness.  I think  families are made to feel that while the patient may have some latitude to express those
feelings, family members are perceived as self-centered or somehow not
entitled to those feelings. 

My son and I talk a lot about that and how he feels guilty about his reactions sometimes because any problem less than terminal illness seems self-indulgent when someone you love is facing death. 

You know I think Jim has done such a good thing by doing this and I hope he won’t give it up.  And I think his family has so much to contribute by giving their perspective, but I can certainly understand why they want to stop. 

It’s too bad because they are in the position to be a voice for the other
dimension of this, but maybe they will be able to do it someday when they’ve had a chance to reflect instead of doing a blow-by-blow as it happens.  Jan

Living with a cancer diagnosis affects many areas of your life. Two of the most common are relationships and your belief system.

Relationships are affected when chronic illness of any kind strikes. Difficulties develop which are so complex that statistics show nearly 85 % of marriages with these challenges fail. No one warns you of this and too often couples are into the problems before they realize what has happened.

Creating a support system can be helpful. A cancer support group or individual or couple counseling can help you stay aware of how your relationship is being impacted and what you need to be alert to.

A cancer diagnosis can impact your belief system. It may expand it or it may challenge. If you’ve been taught that everything happens for a reason or that people get what they deserve, then you may feel hopeless and let down by your faith. You may find yourself asking, “Why has this happened to me?”

You may feel angry at God and then feel it is a terrible sin to be angry with God – or you may fear you have lost your faith.

Such feelings can deprive you of strength and reassurance that faith offers at a time when you need it most. Your faith needs to give you comfort and support, not feelings of abandonment, so talk to someone you trust.

Since then she has undergone every conceivable issue related to cancer:

*choosing experimental treatment over conventional

*coping with raising small children

* living with cancer-related fatigue

* experiencing seven recurrences

* having to recognize that her old life as a family practice physician was gone forever.

 When she was first diagnosed she was committed  to educating her  patients and she wrote a pamphalet for them about all the things to do when you learn you have cancer.  It eventually became a book called Diagnosis: Cancer that was published the month she found out about her first recurrence.

Other books followed.  After Cancer:  A Guide to your New Life, which provides cancer survivors with questions and issues to address as they move out of treatment and into the “new normal.”

Her next book When a Parent has Cancer tells what she and her husband  learned about how to help children and parents cope with the experience.  Tucked in the back cover of the book is a children’s book Becky and the Worry Cup written about the experiences of her oldest daughter Rebecca.

Next came The Hope Tree:  Kids Talk about Breast Cancer, a book she co-authored with Laura Numeroff to help families talk with their children.

Happiness in a Storm: Facing Illness and Embracing Life as a Healthy Survivor, addresses survivorship from all illnesses and provides practical philosphy and science-based knowledge to get good medical care and  find happiness while you are sick.  

Her most recent book is Only 10 Seconds to Care:  Help and Hope for Busy Clinicians, is aimed at physicans but also extraordinarily helpful to patients.

Her books are available through any bookstore and her website is www.wendyharpham.com

Not knowing “how long you have” is hard for the patient and the family.  This is a time when some enter a period of what is called “anticipatory grief”.   

Anticipatory grief does not substitute or lesson the post-death grief process.  It is not just post-death grief pushed ahead in time.

When a family is anticipating a single death, they are also anticipating multiple losses – loss of hope, a future together, levels of functioning, security and invulnerability.   

The most common concern for anticipatory grief is that it can result in premature detachment from the dying person, resulting in a feeling of abandonment.    

The most difficult challenge for a family during this period is to try and maintain as normal a lifestyle as possible. 

Jim’s family has set a good example for us by trying to maintain normalcy.  His wife, LeAnn, not only continues her job as a teacher and is involved in the activities of her husband and teenage children and her friends, but she also prepares for and runs marathons.   Her latest run was the Oklahoma City Memorial Marathon in April.   

Jim’s daughter Maddye and son Ford pursue their own interests, hang out with friends and do normal things that teenagers do.   

Jim, in addition to chemotherapy treatments and regular trips to M.D.Anderson Cancer Center in Houston, continues his job as an attorney at the Oklahoma Court of Criminal Appeals, writes poetry, is completing a 2^nd book, participates in poetry readings, lunches with friends, sees movies and spends time with his wife, his kids and his friends. 

It is common that a few people will judge them for trying to live a normal life, but it is an important aspect of weathering this experience because nobody can face death all the time and unless you take time for yourself, for letting out your feelings and taking care of your health, you may well run out of fuel before the process is over.

They were having a typical teenage/parent conflict and he blurted out, “So how do you think it feels to grow up having a mom that’s going to die all the time?  My life is awful and nobody wants to hear about my problems because you have the monopoly on that.”

Lynn says the down side of having a relationship where your kid is comfortable enough to tell you anything and everything is that …. sometimes they do.  

She remembers how much that hurt her because she had wanted so much to protect the kids from being consumed with cancer and when he threw those words at her saying his own life was upside down, she felt guilt and responsibility for having failed to do that, especially when she had thought she was doing such an outstanding job of managing it all.

When her son saw her reaction, he immediately tried to take it back.  She remembers him sobbing and telling her how he hadn’t meant it.   She, however, knew he was telling his truth and so did he.

She said, ” I even felt worse that he couldn’t say what he was feeling without such guilt.  It was totally circular guilt and regret.  I remember not having a clue what to say or do to make this less significant and less painful to both of us.”

Lynn remembers longing for just a few hours to have a respite without argument.   She wishes she had said  …..”between three and six on Mondays and Thursdays, we are going to forget what is happening that is consuming us.”  

Now in looking back at that experience, Lynn wonders whether that was just an “I hate you and I hate my life” moment that teens so often experience instead of the “I hate you and I hate my life, but only because you have cancer” moment that she had interpreted in that split second.  She says in hindsight she wishes she had just glared at him and responded with ”I don’t believe you mean that for a single second.”   Even, she said, if I didn’t believe it, a least he might have been able to.

A few days ago, Lynn asked her now grown son if he remembered that incident.  His response was, “Mom I remember that I said that a lot and I also remember that you said that I was full of it and to stop trying to manipulate you with pity!” 

She said he even got her tone of voice down perfectly, and muses, “Funny, I think he honestly remembers it that way.  I feel like I must have done something right in spite of myself.”

He has been doing the chemotherapy with the usual side effects – hair loss, nausea, lethargy – and it is all worth it because it seems to be stabilizing the cancer….it’s not going away, but neither is it growing!  

We’re celebrating and will take all small victories.  Way to go Jim!

I read the April 19th Sunday Oklahoman’s front page storyby staff writer Ken Raymond and wondered if the Chastain family really understood what they were signing on for when they agreed to let us follow their experience of living with terminal cancer. 

What I want to say to them is “You are incredibly courageous.  Courage does not mean the absence of fear, it means choosing to live in the midst of it, and I marvel at the way you are trying to live normal lives – when the definition of normal for you has changed. ” 

Try as this family might to put this aside and forget it is really happening, that isn’t possible.  Everything they do gets heightened – even normal adolescent quarrels with parents and siblings - and then to have it on the front page of the Oklahoman for all the world to read – takes guts.

Thank you is not nearly adequate to express to them what I want to say, but it’s all I’ve got. 

*  Thank you for allowing us to look over your shoulder while you take this  very personal journey through terminal cancer. 

*  Thank you for helping every family with teenagers understand that when they experience exactly what you are experiencing,  fights are normal even in a close knit and loving family.

*Thank you to LeAnn and Jim and Maddye and Ford for demonstrating how that automatic stress reaction looks when we feel trapped – fight or flight.  

Some people want to fight – LeAnn and Maddye are terrified and furious  there is nothing they can do to stop it and if you get in their way, don’t misunderstand the anger that lashes out.    

Some people want to flee – Jim and Ford are feeling afraid and helpless and they shut down, withdraw, and get quiet, which is what I did when my husband and I were in the last weeks of his battle with cancer. 

The feeling was I wanted to run away.   I can remember how guilty I felt because I was feeling that way, but now I understand those “feelings” don’t mean a thing, they are simply the body’s way of trying to offer protection.

*Thank you on behalf of all the families who have yet to walk through this experience.  Your openness and honesty will help them to understand their own feelings and behaviors as normal – under the circumstances – and they won’t have to feel so guilty as they might have before you allowed us to intrude on your pain.

I read somewhere that courage is that little voice inside saying I will try again tomorrow.  Today, the Chastains are the most courageous people I know and what I know about them is that tomorrow they will get up, shower, dress and face the day again.  

My heart is full of  gratitude and admiration  for them all.

For simple, useful, concrete suggestions to use when that time comes, join me on Thursday evening, April 16, 7:00 p.m.at the Baptist Medical Center’s James L. Henry auditorium to hear Megory Anderson. 

Anderson is a theologian, author, educator, liturgist and Executive Director of the nonprofit SACRED DYING FOUNDATION in San Franciso.

Her presentation will not be about mourning and how to handle grief, it will not be about the mythology of death or funeral planning.  Rather, she will teach us how to be with a dying loved one, how to provide them with something more than pat answers and how to make it a meaningful experience. 

We will learn how to use a variety of things, such as music, rituals, poetry or prayer that have been an important part of the person’s life experiences.

To make reservations, call the INTEGRIS HealthLine at 951-2277.

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