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Danioh

Mental Health & Lung Cancer! New to Blog

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Hi Community.  While I know I am more then this lung cancer, here is the data.  Diagnosed in 2018 w/stage 3A adenocarcinoma; had RUL lobectomy via VATS; treated w/chemo as adjuvant.  In Jan of this year, another tumor was identified in my ULL.  1cm, indolent so far.  Been gathering data for treatment approach.  Lung oncologist last Th told me to prepare for the long run due to how quickly the tumor came back.  Gasp!  The powerlessness, uncertainty related to the future, stress from navigating the health care system, etc has thrown me into a full fledge anxiety disorder and agitated depression.  Had two sessions with a psychiatrist from the cancer pallative care unit and was placed on meds.  However, I feel absolutely frozen in fear of making the wrong decision. Overwhelming!  Can anyone recommend a retreat center in CA?  I am a clinician and planned out last weekend a full retreat schedule with activities that I thought would benefit me.  As I get healthier perhaps I will offer it...but now, CRAZYINESS!  Can anyone relate?

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Danioh,

I answered your first post in an other forum and I'll not repeat that discussion here.

Welcome to powerlessness central. At least you consulted with a mental health professional; I tried to tough it out and failed miserably.  Unfortunately, lung cancer treatment is often a long slog.  Mine was three years and a month of active treatment but since March 2007, I've achieved no evidence of disease (NED).  If I can get there, so can you.

Let's dwell on wrong decisions and fear.  You have two options: treat or don't treat.  You chose treatment first time around and you'll likely choose it again.  As I see it, the only possible wrong decision is to not treat.  Choosing treatment will not eliminate future uncertainty, health system navigation stress, and cancer anxiety (scanziety).  These will all remain whether you decide to treat or not treat.  I can't recommend a CA retreat center, but I'd opt for a week of solitary camping in Yosemite National Park. When away from population centers, I am awed by looking at stars painting the night sky.  My problems just melt away.

Yes, I can relate to lung cancer craziness.  I think we all can for it never gets better or easier, but it can get crazier. Let's hope things stay just plain crazy.

Stay the course.

Tom

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Danioh,

My LC is my second bout of cancer, the first being colon cancer in 2010 and both required surgery.  I was lucky that both were caught early and I did not require additional chemotherapy or other treatment (like other folks have).  But, I can tell you that the fear, anxiety, helplessness and feeling of impending doom after being told the lung nodule was cancer was overwhelming.  I felt really lost and actually turned all of my energy to preparing for the end.  I saw my mom die of lung cancer back in 1996 and already had a "movie" of how I would die from this.  In your case I can't offer advice on non-surgical treatments, but super folks like Tom, Michelle and others can.

For my part, my wife is in early stage Alzheimer's, so she can't really provide the kind of comfort and companionship that she would have pre-disease.  I did tell my daughters, sister and cousin and that helped somewhat, but I was being consumed by all the fear that this type of diagnosis brings.  One night I was looking for support groups and came across this forum.  I first scanned a couple of posts, but didn't join because that would have been an admission that my diagnosis was real and I wasn't about to face it.  A few days later I read some posts from Lexie, Curt and others and saw myself in their posts.  I joined this group and I cannot tell you what a help it was.  Not everyone had the same thing I did, but folks listened to me, provided all kinds of great support and advice that helped me get through a bunch of medical appointments and long, dark evenings.  I even had separate messages of support and motivation that got me through the 3 weeks from final diagnosis until surgery (thanks Curt).  

All of this interaction literally changed my thinking.  These folks became an extension of my family; they got me, had been here and suffered all the physical and psychological trauma that I had.  They helped me to get through my surgery and recovery in a way none of them will ever know.  So, you've come to a place where your feelings are fully validated and there are a great number of cases (like Tom) where there is hope for you to grab on to.  So, "Yes" we have all felt that "crazyness" and understand it.  I'd be concerned if you didn't feel all those things.  You're smart to seek professional help and you can stick around here as you go through this latest journey, you'll find some of the greatest people and support I've ever had the fortune to know.

We'll be here and offer all we can as you move forward on this, but please fight, don't give up, I have heard people's stories here that amaze me for the hope they showed and the battles they have fought.  To my mind they're heroes and you'll be one too, you're stronger than you believe, more hopeful than you know and, by virtue of your post, lots of folks are already pulling and praying for you.

Lou

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Welcome Danioh!   You will find help and support here.  I am very new to this site, April of 2019, stage IV lung ca with brain mets.   My husband is great support along with my son and his family.  But, having this support group means the world to me--reading their stories and words of encouragement--you realize there is a lot of hope and support out there and you are not alone.  You take care now.  And as Tom puts so well--stay the course...

Susan Rae

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Hello Danioh-

I’m Lou’s “adopted”’little sister Lung Buddy in KC.  I was diagnosed Stage IV ALK Positive last September. After being treated by 3 different PCPs for allergies that didn’t exist, no one had lung cancer on the radar.  

In a previous life I was a mental health clinician (still a LCSW), however nothing prepares you for this diagnosis.  The health and disability insurance can be a real challenge if you let it.  I worked with a great interdisciplinary team, including an attorney to get over the administrative stuff. 

This is definitely a marathon. I’m glad you found a psychiatrist, hopefully you will find over time you will have greater confidence to battle the disease.  Tom calls it the battle rattle.  It doesn’t happen overnight but there is a turning point.  

For now, give yourself permission to acclimate to whatever this new normal is.  It’s time to build your support network with people who will lift you, say some easy goodbyes to anyone who may have a toxic influence.  Your wellness is now your full time job and you can do this! 

My doc didn’t think antidepressants or anxiety agents would be effective as my targeted therapy passes the blood brain barrier and my coping mechanisms went out the window.  So, I found new things.  I’m a big fan of acupuncture, deep tissue massage, restorative yoga, and Gi Gong Tai Chi.  I purchased a good old fashioned CD player to listen to mind body medicine from Candace Pert and Bellaruth Naperstack 

AntiCancer Living was a good initial “how to”’put your life back together book.  

I’ve never been part of an on line community before, didn’t have time for social media. What I can echo here is these people here are my safety net.  

Lungevity also has a lung cancer buddy program.  I have a peer support mentor who is about a year ahead of me.  It’s a great resource. 

Welcome to your new family.  Keep us posted along the way.  Brighter days are coming. 

Michelle

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Thank you @LouT.  I’m glad I was able to help.    Danioh I’ve felt overwhelmed, depressed, afraid, uncertain and anxious during this journey.  Those are all normal emotions when dealing with something like this.  I think a lot of people spend a lot of time focused on the physical toll this disease and it’s treatments have on us that the psychological tolls is less talked about and focused on.  I had to mentally be ready for treatment.  Once I was mentally ready I was better prepared to deal with the physical difficulties.  I’m glad you are seeking help.  We all need it.  As I overcome the physical difficulties of my treatment it is becoming more apparent that I need to also focus on my emotional healing.  

The Lung Cancer foundation (Formally the Bonnie J Addario Foundation) is based in CA.  They may have some support systems available to you.  I’ve watched their online series on YouTube and found them informative.  

National Cancer Institute Center’s have a good reputation and there are a bunch in CA.  You can search for one here https://www.cancer.gov/research/nci-role/cancer-centers/find

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Thank you all for sharing your kind words as well as the encouragement that has come from your experiences. I use to manage mental health treatment centers for a living and often wished there was a cancer residential/outpt program available that could help me process the myriad of psycho/spiritual aspects of this dis-ease.  I live outside of LA where there are four cancer institutes so from a business perspective, I don't think we would like for patients.  Even MD Anderson doesn't have a psychiatric or residential unit which I find strange.  In speaking w ith some of the staff at the UCLA pallative care unit, they state they are swamped with clients whom they see at transfusion centers.  What about all the others at various stages of treatment who are asking silently, "Is this worth it"...etc.  A consulting doc told me this past week that since the cancer came back so quickly that I need to prepare for the long haul.  That was Th and I haven't left the house except to walk my dogs for 20 minutes!  I could use a program!!!!  My business brain is strategizing on how investors can get a return which is where I am stuck.  I have connections...and am wondering if building a program is the "what next" outside of cancer.  Well, thats where my mind is focused for today.  Lovely to connect with you all.  Thank you for listening.

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Actually you might find what you are looking for at one of the NCIs in terms of what we in the biz used to call partial hospital day programs.  I go to Turning Point ( see www.turningpointkc.org ).  They offer a holistic program to put your mind, body and spirit back together.  The added advantage is that they are FREE services.   They have many groups, body movement programs, creative arts & nutrition.  I organize my calendar around them.  

In KC Turning Point contracts with the best experts in the area.  For example there is a top Pilates studio owner leading two of the classes. Her private studio is booked months in advance and costs thousands. 

Ask the oncology social worker- they can help you develop a program that works best for you.  

So nice to meet you! 

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