Tag Archive: Brain Cancer

May 02

May – National Brain Tumor Awareness Month

May is National Brain Tumor Awareness Month.

Over 10,000 people are diagnosed with glioblastoma each year in the United States and nearly 60,000 people when accounting for all primary brain and central nervous system tumors.

In recognition of National Brain Tumor Awareness Month, I am
donating $3 to the National Brain Tumor Society for every “Suddenly a Caregiver” paperback sold through Amazon and Createspace during the month of May 2013.

Q: Why are you only donating for sales through Amazon and Createspace?

A: I received reports in near real-time though the Amazon and Createspace sales channels. Other sales channels have reporting delays of up to three months.

 

Suddenly a Caregiver

 

 

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Apr 12

Glioblastoma and Caregiver Internet Finds

Interesting articles related to glioblastoma and caregivers that I read this week.

Running for Jennie – Kristin Elmore

http://www2.mdanderson.org/cancerwise/2012/03/running-for-jennie.html

Kristin cared for her friend Jennie, who battled glioblastoma – a stage 4 brain tumor cancer. She was impressed by the courage and strength that Jennie displayed in her fight. I am encouraged to hear this theme on a frequent basis. I am strengthened to both witness and hear about such strength and courage. I am also grateful to hear of Jennie’s unselfish and fearless approach toward organ donation. I share a very similar story in my book Suddenly a Caregiver.

Understanding Glioblastoma, Part 1

https://www.facebook.com/photo.php?v=466024256803333

Neuro-oncologist John de Groot, M.D., discusses the basics of glioblastoma, a malignant primary brain tumor, including risk factors, symptoms and diagnosis.

Understanding Glioblastoma, Part 2

https://www.facebook.com/photo.php?v=466748153397610

MD Anderson neuro-oncologist John de Groot, M.D., explains treatment, clinical trials and research for glioblastoma, the most common malignant brain tumor. He also offers advice.

Early Results of Activartis AV0113 Cancer Immunotherapy in Glioblastoma Trial Reveal Promising Trend

http://pipelinereview.com/index.php/2013041150680/Vaccines/Early-Results-of-Activartis-AV0113-Cancer-Immunotherapy-in-Glioblastoma-Trial-Reveal-Promising-Trend.html

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Nov 16

Suddenly a Caregiver – Grieving (Part 4 of 4)

This article is part 4 of 4 of the chapter about grief from my soon to be released book – Suddenly a Caregiver. I was the primary family caregiver for my wife who battled brain cancer for nearly four years. The chapter – Grieving – shares the grieving and recovery experience. I hope my experience provides a source of learning for you.

Visit the book page and the Facebook page for book release information. The first 100 people that register will receive a coupon for a free eBook edition upon release.

Read Suddenly a Caregiver – Grieving (Part 1 of 4)

Read Suddenly a Caregiver – Grieving (Part 2 of 4)

Read Suddenly a Caregiver – Grieving (Part 3 of 4)

Despite the preparation the family and I made, there are areas where we could have improved. Our family digital photo albums date back to 2002 with subsequent albums categorized by year. At Lynne’s diagnosis, and through her treatment, the family took about three times the number of photos as in previous years. While photography during an illness may be uncomfortable to some, I am thankful that Lynne was comfortable with the many photos taken of her. One person shared with me that taking photos during the illness, initially seemed Suddenly a Caregiverstrange but later recognized that the family photographs, captured during that time are now the most cherished of all. At the time, I did not foresee the need to collect photographs from others to combine with the family library, but even as I write, I remember some photographs that I can no longer locate. At the time, I underestimated the importance those photographs would have in the future, for helping the family members with remembering important events. I share this as an encouragement to you to collect those pictures and place them in a safe place. You may not realize just how cherished those photos might become.

We captured family videos of the family when the children were young but that decreased over time. I did capture some special moments on video taken while on a cruise with Lynne to Alaska in 2009. I transferred the early videos from tape format to digital format to make sure that my family could enjoy them long into the future. The family benefits in their recovery by remembering the good times captured those videos.

Lynne did leave our family some wonderful memories through her scrapbooking. These books not only contain cherished photos but also have Lynne’s special touches, as she personally created each page. Several family members and friends have commented that the birthday, anniversary, and ‘thinking of you’ cards she made for them, still serve as a fond memory of Lynne’s caring spirit.

Other areas of preparation included collecting favorite recipes for future use. Lynne was a good cook and an exceptional baker. Her recipe collection was extensive, filling several shelves in our home pantry. We neglected to write down some favorite recipes for the family to share. This is just another area that you might consider focusing on, for storing such information for future use and facilitate the remembering of special times.

You might also collect phone messages and voice recordings. My son has a few phone messages from his mom. One in particular is very special to him. She called Josh to wish him a happy birthday. Unable to take her call at that moment, she left him a voice mail, singing to him. I am unaware of other family members who have such voice recordings but recognize that you might value such a memory in the future. Do consider collecting such items while you have the chance.

For some of these tasks, you might consider asking a family member to help. Your role as a caregiver may be time-consuming, so focusing on tasks like photo or recipe collections might not fit your schedule. When family members or friends volunteer to help, I suggest you consider these types of projects. As a caregiver, you can help other people through their grief by allowing them to participate in some meaningful way. I believe our Creator designed our human nature to serve, so providing opportunities to someone to serve not only helps you but also helps others as well.

Other potential steps exist that help to prepare for the burden of loss. Despite all of the good intentions early in life to prepare a living will, neither Lynne nor I had done so. After her initial brain surgery and recovery, we both prepared a living will and health care power of attorney. Preparing the living will to Decisions - Living Willdocument Lynne’s advanced directives enabled us to discuss Lynne’s decisions regarding the end of her life. The health care power of attorney allowed me to represent Lynne when she could not make decisions herself. The discussions we had and documenting them for legal purposes helped me significantly during the final week of her life and the weeks following her death. Knowing that the decisions I made on Lynne’s behalf were those that she desired lifted a heavy weight from my heart. The doubts that surfaced in my mind following her death eased slightly, as I knew I was following her desires.

In addition, keeping a journal might prove useful during your grief and recovery. Some people incline naturally to keeping journals, while others might struggle with the act of expressing their emotions in writing. For me, writing in the blog and maintaining medical treatment records met only a partial goal of keeping a journal. During the care giving process of one that is seriously ill, difficult situation arise. Sometimes the experience and outcomes of the situation will be better and at other times, worse. I believe some people tend to remember these down times because of the protection mechanisms built within the brain. During the grieving process, a journal containing records of the good times we have experienced helps to serve as a reminder for when we experience the sadness that is a natural part of the grief recovery. Recording the emotions you feel during the caregiving process also allows for reflecting back, and I hope, seeing progress compared to how you felt previously. Observing the progress in your own well-being provides an encouragement in its own right.

The many discussions that Lynne and I shared about death and dying during her illness were paramount to my grief recovery. Family members, who openly communicate about death, tend fare better than families with less open communication (Black, as cited in Carmon, Western, Miller, Pearson, & Fowler, 2010). One reaction to grief is personal growth. This reaction seems most predominant in those that openly communicate about their grief. Other reactions to grief include such things as anger, blame, despair, and panic (Carmon, et al., 2010). The discussions between Lynne and me helped to reduce the uneasiness we held about the dying process. In the final months of her life, I began to sense Lynne’s own internal preparation for that day. My selfish nature desired that she live but she showed signs of exhaustion from the three-year battle. As I reflect on those discussions, they are some of my most treasured and valuable memories.

Another preparatory step includes understanding an employer’s policies and benefits related to taking time off from work to tend to caregiving and bereavement. Knowing these policies ahead of time potentially reduces the number of concerns and worries, when caring for someone. It also helps when the death occurs. I was fortunate to have a very understanding management chain. However, without speaking to them, I would have increased my anxiety about missing work suddenly or adjusting my work schedule, to accommodate the time I needed to care for Lynne. My two immediate supervisors were very wise. Just days following Lynne’s diagnosis, they scheduled a discussion with me about their intended approach to the situation. This eased my mind, as one thought that crossed my mind during the first week of this ordeal was the potential impact on employment and the ramifications that would ensue.

It is impossible to prepare completely or anticipate all of the emotions and other concerns we face during a loss. I believe that preparing and anticipating the loss causes thinking and actions that help to minimize, if only slightly, the grief of the loss. Reminiscing and expressing emotions with family and friends provide effective coping tools after the death. For me and my hope for you is that the hopelessness turns into hope, and the grief turns into joy, as you learn to push forward and reflect on the positive memories and the legacy of the life that was lost.

References

Carmon, A. F., Western, K. J., Miller, A. N., Pearson, J. C., & Fowler, M. R. (2010). Grieving Those We’ve Lost: An Examination of Family Communication Patterns and Grief Reactions. Communication Research Reports, 27(3), 253-262. doi:10.1080/08824096.2010.496329

Please share your comments, thoughts, and suggestions.

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Nov 15

Suddenly a Caregiver – Grieving (Part 3 of 4)

This article is part 3 of 4 of the chapter about grief from my soon to be released book – Suddenly a Caregiver. I was the primary family caregiver for my wife who battled brain cancer for nearly four years. The chapter – Grieving – shares the grieving and recovery experience. I hope my experience provides a source of learning for you.

Visit the book page and the Facebook page for book release information. The first 100 people that register will receive a coupon for a free eBook edition upon release.

Read Suddenly a Caregiver – Grieving (Part 1 of 4)

Read Suddenly a Caregiver – Grieving (Part 2 of 4)

 

Anticipatory Grief

Many patients with terminal illness, and family members or friends who care for them often recognize that death will come eventually. They then begin to anticipate the grief. In the case of Lynne’s diagnosis, my research led me to realize the incredible odds against surviving glioblastoma. Despite those odds, I Suddenly a Caregiverdid hold out hope that this case would become an exception, rather than the rule. However, as I reflect back, I realize that I began to anticipate grief while holding on to hope. At some point, I believe Lynne also recognized that the end of her fight was approaching. I believe through her awareness that she helped me prepare for that event. In my case, I believe the anticipatory grief helped me to make the adjustments needed when Lynne passed.

Societal practices try to help people through the grieving process. Funerals provide one such practice. Writing public death notices, writing obituaries, and other traditions contribute to the acceptance of the loss. These help us to face the reality of the loss, which describes a necessary step in the recovery process. Discussing our pain, sharing memories, and sharing experiences help us to face and work through the pain of loss. Recovering from grief includes adjusting to the new environment without a friend, child, parent, spouse, or other loved one. Finally, I hope that we begin to invest anew in our lives while maintain the memories we have of the one who passed.

With the introduction of the Internet, we discover new ways that people can use online communication and build relationships to facilitate the process of grief. In a later chapter, I discuss my use of technology and the Internet during Lynne’s illness. I maintained a blog to facilitate communication with friends and family. The day Lynne died, I posted a message on my blog, and on that same day, over 500 people viewed the message. That post was one-step toward addressing the reality of the loss. As I researched for this chapter, I also located grief forums, where people exchange their situations with other people, mostly strangers but strangers experiencing the grief caused by a loss of their own. The anonymity provided by the online forums supports people in opening up, venting their frustration, anger, and other emotions. It also provides other people an opportunity to show support, encouragement, and provide advice.

Preparation for Grief

Preparation for grief was an important piece of the recovery from my loss. When I say, preparation, you might think that it started during Lynne’s illness. I believe that for me, it started much earlier and demonstrated itself in various ways. Because my dad served as a preacher, exposure to death occurred earlier and more often to me than for most young people. Like most, I lived life as if it were going to last forever; however, the exposure to death created an impression on me. The exposure to death helped me to realize that this life is temporary. This mindset helped me to share my appreciation of others before it was too late. Too many times, I heard others speak about their regrets concerning not sharing how much they loved someone or appreciated his or her example until after the death. I feel that is a pity. I decided to ensure that I tried to share my appreciation with those I cared about while they were still living.

Preparation for loss also included setting aside any grudges, anger, bad feelings, and other things that most of us would regret holding onto after the loss of someone close to us. This also includes apologizing to someone for some wrong that we caused. I discovered that stepping up and apologizing when I was wrong was much better than holding onto that wrong eventually causing a regret following the loss of that special person. Avoiding the apology for the wrong might cause regret eventually, following the loss of that special person. This type of preparation averts the regrets we often feel during a loss, whether the loss is sudden, or resulting from a long illness.

 

In the next part of this series, I will share information about some lessons learned by me and my family.

Please share your comments, thoughts, and suggestions.

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Nov 14

Suddenly a Caregiver – Grieving (Part 2 of 4)

This article is part 2 of 4 of the chapter about grief from my soon to be released book – Suddenly a Caregiver. I was the primary family caregiver for my wife who battled brain cancer for nearly four years. The chapter – Grieving – shares the grieving and recovery experience. I hope my experience provides a source of learning for you.

Visit the book page and the Facebook page for book release information. The first 100 people that register will receive a coupon for a free eBook edition upon release.

Read Suddenly a Caregiver – Grieving (Part 1 of 4)

Grief Models

While different grief models exist, proposed by many experts, in 1969, Kübler-Ross published the first, widely accepted model of grief. This work provided insight into the emotions that people experience when facing death. Much literature references this model and serves as a basis for discussion, in many

Suddenly a Caregiverarticles and papers that followed its release. Later, other researchers extended or revised the model to include other people who experience grief, not only to those facing death. The model suggested a linear progression through the grief. Over time, a growing number of experts rejected the idea that people progress sequentially through the phases. As a result, some experts subsequently provided additional models to help understand grief and the affects that grief has on people.

Like me, you might discover parallels within your grief like those described in the model. Some describe the experience with these grief phases as overlapping at times with some phases extending for prolonged times. I know that grief is not a tidy or straightforward process. Some claim the grief experience feels more like the ball in a pinball machine bouncing from one stage to another with nothing described as sequential. We just need to keep in mind that the way each person experiences grief is unique to the individual. The one huge benefit of these models is that they provide some legitimization for the emotions we experience as individuals as we recover from a significant loss.

Because people reference the Kübler-Ross model most often, I will provide an overview of the following stages:

Shock and Denial

During the shock and denial phase, the shock of the loss is overwhelming. This occurs whether the loss is sudden or anticipated. The griever tends to deny that the loss will occur or has already occurred. This is a normal part of process for most people. The brain’s protection mechanisms help griever’s try to cope with the loss.

Anger

Another normal part of grief is the emotion of anger that surfaces because of the loss or the anticipation of the loss. The griever may blame family, friends, or even themselves. The grieved may even blame the person they lost. It is important that the griever express the emotions through sharing with a trusted person to avoid prolonged depression, self-destructive behaviors, health issues, or other negative effects. Depending on the depth of grief, this may lead to a friend, spiritual advisor, counselor, therapist, or physician.

Bargaining

In the bargaining phase, the grieved bargain with themselves, other people, or even with God to avert the loss. The grieved try to seek out options to change the reality of the loss.

Depression

For some, the depression phase is the feeling of sadness or despair, while for others this phase results in clinical depression. It is important to seek out support from a doctor, counselor, therapist, friend, or support group. This phase often leads to other problems, both physical and emotional, if not addressed. For some, this phase is often the longest phase of the grieving process. We pay this price as human beings because we care about others. In any major loss, it is not a sign of weakness to ask for support, in fact, this is an inevitable step, necessary in the grief recovery process. The griever then begins to deal with the often-painful memories and begins to learn to cope with the life changes resulting from the loss.

Acceptance

The acceptance phase results when the pain of the loss begins to lessen. The griever begins to look ahead. The acceptance of the loss causes the griever to move forward, embracing, or at least accepting the changes that the loss created in their lives. The depleted energy resulting from grief begins to increase steadily, as the weight of sadness and despair begin to lift from the griever’s shoulders.

Most people move through these phases of grief. The length of time a person spends during each phase depends on the circumstances and is unique to each individual. It is very easy to compare ourselves to other people, and judge that something might be wrong with us, when we do not handle the grief similarly. Just remember, you are unique. Take comfort that your grief recovery is also unique to you. I learned about the grieving process during my studies several years before Lynne’s diagnosis and death. That understanding helped me to recognize my emotions and my feelings as well as to accept that they were normal, and to be expected, during a significant loss.

I observed many families over time that lost a loved one. One of the most profound losses a person experiences is that of a spouse because of the relationship depth and the additional potential for economic losses. Based on discussions with those losing a spouse, I believe that losing a spouse affects the relationship within the social circles that the couple shared. I believe there are two contributing factors. First, the surviving spouse drawers closer to their own family for support. Second, others within the social circles struggle with the surviving spouse due to a partial loss of identify, that is, the transition from a “couple” to that of a  widow or widower. Observations also indicate an increased mortality rate among the surviving spouses, especially in older people due to the major stressor (Gass, 1987, as cited by Harvard Medical School).

In our society, most people recognize the inevitable nature of death but many rarely experience the process because societal norms tend to hide death behind the walls of health care facilities. This tends to deemphasize the process of grieving. This potentially decreases our ability cope. Sometimes during a terminal illness, a struggle exists between health care providers and families, regarding disclosure of all the facts surrounding the illness. Health care facilities and health care providers maintain various and differing ideologies. This is understandable because some people want the facts and others try to avoid the facts. This simply demonstrates the differences in the ability to cope with illness and the potentially impending death.

 

In the next part of this series, I will share information about anticipatory grief and preparing for grief.

Please share your comments, thoughts, and suggestions.

References

Harvard Medical School. (2011). Beyond the five stages of grief. The bereavement process is seldom linear and varies from one person to the next. The Harvard Mental Health Letter / From Harvard Medical School, 28(6), 3.

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