Learning to Live Life After the Tumor

Linda can be reached at www.lindamrio.com
Linda’s book  “The Hormone Factor in Mental Health” is available through Amazon.com and other major booksellers.  Click here for a direct link to the book page on Amazon .  

From PWN contributor Linda M. Rio, MA, Marriage & Family Therapist  –  

I met with a couple (identifying information changed to protect privacy) in my psychotherapy office this morning. His tumor was removed over a decade ago but for this couple it seems like it was just last week. Life came to a complete halt when he was wheeled into the surgery room and has never been the same since. She had been the primary one to provide childcare and nurturing along with shopping and household chores. Following surgery, he could no longer drive and some cognitive, organizational skills were compromised. He was unable to continue to work so went on disability. His wife got a job that required lots of travel and time away from the family. Over time she built-up resentments for having to “do it all”, as if felt to her. He blamed himself for the impact on the family and became withdrawn and depressed. Most importantly the couple had never talked about the changes to their lives or the impact this had on their hopes and dreams. Years later in a therapy office they reluctantly faced the many changes to their lives as well as the now stored-up emotions due to the years of not sharing.

For many pituitary patients surgery is not even an option or the best course of action. For some it is the only option for any possible quality of life. For a few it is a matter of life or death. The decision to undergo neurosurgery is a very intense and important one that must involve not only the patient but hopefully close family members as well, particularly a spouse or significant other. And, I, along with the professionals who contribute to Pituitary World News agree that patients should always, always seek-out a neurosurgeon who is highly specialized in the particular type of tumor as well as one associated with a “Pituitary Center of Excellence”. These tumors require the skills of only very skilled and experienced surgeons.  Since my perspective focuses on the psychological, emotional, and family/social relationships, I address those as impacted by a tumor and leave the endocrine aspects to Dr. Blevins and his colleagues.

Following surgery life is undoubtedly different. Each and every case is unique. How a patient was functioning physically, emotionally, cognitively, and socially before surgery is relevant to how they may succeed or fail following surgery. Having support from family and friends is, of course, an important element in any healing process. The length of time to get the proper diagnosis is an important factor as well. Since many pituitary disorders are often difficult to recognize, diagnose, and receive proper/specialized treatment those patients who have had to wait months to years may have already experience deteriorated physical as well as mental/emotional health by the time they are ready for surgery. For those who have unfortunately had to wait a long time their mental and physical resources may be depleted making life-adjustments after surgery even more difficult.

On the positive side many pituitary surgical patients experience such success with surgery that their lives are dramatically improved. For these patients not only the successful surgical removal of tumor material improves their hormonal functioning but they also receive excellent endocrine follow-up with medications. Physical and mental health symptoms can dramatically and almost over-night improve for some.

The couple I saw this morning spent many therapy sessions going back over the last decade piecing together the parts of their lives they stopped sharing with one another. Following his surgery they had to make abrupt changes and forgot to work as a team. Instead they reacted as hurt and isolated individuals. Each had unexpressed anger at the tumor but because it interrupted their plan for life. Not finding a way to talk about their anger, and underlying fears, made things worse over time.

Any successful sports team must coordinate and communicate both on the field and off. If a player is injured or just has a skill deficit the other players must be informed in order to work with, not against, their team player. I see marriages and families much as sports teams. Working together and accepting that changes happen is important. Families and teams need to constantly readjust as well as devise creative plans to work around adversity and not let adverse events defeat.

For my psychotherapy couple there were many things not shared. The wife had never told her husband about the days leading up to her husband’s surgery nor the emotional intensity of what she went through the days and weeks immediately following. She never told him about the fears their children had or her pressures to “just try to hold things together”. He had career goals of moving up in his company and his self-image of not working devastated him. He never heard her side of the story but had only focused on himself as the “pituitary patient”. He didn’t think that a spouse, or child would also be so profoundly affected. She never heard him talk emotionally about how he felt “less a man” following surgery. He even secretly harbored fears she was having an affair because of his own self-image of being damaged and less capable.

Neurosurgeons can remove a mass. The patient and family must find ways to adjust and heal beyond. I have hope for the couple I write about here but their road will be a long one, especially because they delayed addressing the co-existing emotional issues that so often accompany any serious illness, especially one as profound as a tumor in the head.

 

Linda can be reached at www.lindamrio.com

Linda’s book  “The Hormone Factor in Mental Health” is available through Amazon.com and other major booksellers.   Click here for a direct link to the book page on Amazon .  

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