Help for Healing

Bitter & Sweet, living daily with grief


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More on Genetic Markers

Thanks to all of you who did some research after last week’s blog. You guys rock! It wasn’t even an issue I had thought about asking for help with and yet you jumped in anyway.

At the end of last week, I was able to locate the woman I needed to speak with who had approached me at the conference. It was a combined effort with a couple of agencies, but I found her. I went to meet with her this week and came home with that same mixture of intense emotions – excitement and energy, mixed with a sick stomach all at the same time.

Truthfully, it’s a bit overwhelming. I don’t really have a scientific mind so it’s a bit out of my comfort zone just to wade through articles and learn new terms and jargon. And I have my moments where I just plain get angry and say out loud to no one, “I don’t WANT to talk and think about cancer anymore.” At least not when it’s personal like this.

I wasn’t expecting the first big piece of information. It is best to start with testing Tim’s tissues. They recommend a “tumor panel” vs. just looking for one thing or another. Unfortunately, the hospital did not suggest we do a DNA bank when Tim was a patient there. Supposedly, anyone under 50 that is terminally diagnosed is supposed to be flagged for this but we obviously were not. If we had been, Tim’s insurance at the time would have covered the expenses. Now I could be looking at a $4,000 bill. This is a good reason for me to blog because I’m sure most other people aren’t aware. IF YOU ARE UNDER 50 AND HAVE A TERMINAL DIAGNOSIS, REQUEST YOUR DNA BE STORED AND STUDIED. That should be standard procedure, but it is not.

Generally, hospitals and labs keep samples for seven years. It’s hard to believe, but it has been over six years already since Tim’s initial tests were done. That gives me less than a year to track it down, if it is even still available. I am starting that process this week as it is the first step to all of this.

Second step is family history. I will be researching some programs that can be distributed to Tim’s family with the help of his brother. People will be able to add information they have (you never know who has the scoop on how Aunt Gertrude died type of thing) and then the program spits out the results in an organized fashion. Tim’s brother has been very kind and willing to help with this. The results could be very important to his family as well.

After all of that, we start talking about “germline” testing with 1st, 2nd, and 3rd degree relatives. How effective that is will depend on the results of the first two steps. It will most likely be covered by health insurance because being related to Tim meets the criteria. From there, a positive or negative result will have a domino effect on what happens after that.

Phew.

I’m already exhausted and all I have done is take the information I have and map out a plan of action. Part of me is glad to have my brain stimulated with something new. Part of me is scared to death for my kids. It is bad enough to watch your spouse suffer. The only thing worse than that is to watch your kids suffer.

This totally makes sense to me though. It is very unfortunate there is little emphasis placed on this. I hadn’t even thought about it until now. I just looked at this doctor and said it so makes sense to try to cure cancer. But doesn’t it make even more to prevent it before it even happens? That look passed over her face. The look that said, “Welcome to my world. I think that exactly so why doesn’t the rest of the world? It just makes sense.”

Wish me luck. And energy. I need both 🙂


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Genetic Markers

Last Saturday I was part of a medical conference that was wildly successful. The focus was to start the conversation with doctors, nurses, medical staff, and social workers about starting the conversation with patients/clients regarding end of life planning. The resounding message by speaker after speaker is that our current model is sorely lacking and in particular NY is behind the rest of the country. Right now, the conversation doesn’t occur until you are already in a major crisis or actively dying. This is much, much too late.

Truthfully, the conversation belongs anywhere that people gather. It should start in the home. But the first step is to get medical professionals to be comfortable with the concept. And it is my very strong opinion that the main reason this isn’t already happening is that they aren’t comfortable with dying themselves. How can they help someone else navigate those waters? If docs get it though, they will start to get their patients to talk about it at home. Eventually.

Anyhow, I was part of a six person panel that spoke for about 10 minutes (each) and then fielded questions from the 180-person audience. The conference ended with five skits that showed most of the concepts we were trying to teach. Sometimes the docs in the skits did great, other times they missed the mark. The intent was to generate conversation with the audience and it seemed to do a great job. I was in the skits, but more importantly for me, I wrote them. This was a huge stretch for me professionally. My books and blogs are always about personal things that actually happened. I have never written before by creating scenarios/characters so I was terrified of the outcome. However, it seemed to be go over extremely well. Yay!

On one of the breaks, someone from Roswell (the cancer hospital here in Buffalo) approached me. Bottom line is that apparently they have recently discovered a genetic marker for gallbladder cancer. I was extremely busy preparing for the next section of the conference, but I tried to process the implications of what she was saying. I told her that was incredibly important because the hallmark of gallbladder cancer is there are no symptoms until stage IV when it is already too late to hope to treat it effectively. Of course she knew this. She said she hesitated to approach me, but knew from my lecture that I had kids. Could mean life or death for them.

Could mean life or death for them. That is really the bottom line. I have thought of this repeatedly since the weekend. I didn’t have anything to write the information down at the time, but she told me to google it. I attempted to, but the only articles I could find said there are no genetic markers. I have started looking for the proverbial needle in the haystack in my efforts to find this woman at Roswell. So far no luck but this is worth being my relentless self to find her.

So many, many questions. What if one of Tim’s kids have the marker? What would they do? Remove the gallbladder? Or just run tests every year? Does it ever skip a generation? If the kids don’t have it, should their kids be tested anyway? And would this be important information for Tim’s brothers too? Is there a particular age to utilize this information? I get a physical reaction whenever I start thinking about it. It’s a cross between literal illness from being reminded of the nightmare Tim went through and the utter terror of my kids or grandkids going through it someday, and excitement and anticipation at the possibility of being able to stop it. Thank God I wrote those books and started to lecture or I wouldn’t even know about this information. I think when they have a breakthrough, they should be required to seek out all former patients’ families and make them aware. That’s a pipe dream.

Wish me luck on this latest endeavor. I need to find this person and I need lots more information. And then I need to approach my kids. I talked to Colin and Frankie the minute I got home from the conference. Colin (age 32) just looked at me like I was insane. Frankie (age 14) told me he will never get cancer because he is immortal and will live forever. Later I thought of course this would be frightening for them to even think about, no matter how much they try to be cool on their exteriors.

Yes, wish me luck and say some prayers too!


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Mental Wellness vs. Mental Illness

I think mental health is on a continuum, and every one of us fits on it somewhere. This is one of those topics where we talk in divisions and categories, but in reality the lines are not that concrete. The lines are helpful to discuss issues with each other, but in real life? It can be very hard to distinguish between them.

I am in private practice. Most of the time, my clients consist of people like me. I am functioning, capable, and relatively healthy. I struggle with depression, but overall I manage well. I see a counselor and plan to for the remainder of my life. I don’t always NEED counseling, but I benefit from it. I like having someone to bounce things off of. My clients are generally in the same “category” – they don’t necessarily NEED counseling to function, but choose it because it is helpful.

Oddly enough, I had never thought of a simpler way to express that idea but recently I was meeting with a UB student. There are med students who have the option to choose an elective called “Spirituality and Health” or something like that. These students meet one on one with several key people in our community to get several different perspectives of how spirituality affects our health. I am one of the panelists the students see. Recently I was meeting with one rather delightful student who happened to want to go to into psychiatry. It was a double connection with me, being in the mental health field.

Anyhow, she said she had read about the term “mental wellness.” She’s a good student so she wanted me to be sure and say she didn’t get credit for coming up with the term herself. I loved it. That’s it. People like me are pursuing MENTAL WELLNESS. People like me are helping other people pursue mental wellness.

I got an extremely huge education this week about mental illness. I spoke with some higher-ups and got a big clarification about hospitals like ECMC and what their goals and purposes are. The statistics I got were staggering. The amount of people a facility evaluates and the amount of patients that are actually admitted presents an incredibly huge gap. The hospital is only equipped to see the very sickest of the sickest. They just can’t meet the needs that the larger majority of people in need represent. My question is, then where do we tell our clients to go?

There isn’t a good answer. I am currently looking into some partial programs to educate myself further. It’s a huge problem. It’s what I encountered last year with my daughter. It’s what I encountered last week with my client. It’s what virtually all of my colleagues struggle with. What is there for those people who don’t fit into the “mental wellness” category? They really aren’t functioning well. Counseling and outpatient psychiatry isn’t enough. But they aren’t completely mentally ill either. They aren’t talking about aliens in their stomachs or wielding dangerous weapons around and a serious threat 98% of the time. There just isn’t much in place for them. There just isn’t. And it’s heart-breaking. I feel like I’m watching a disaster in the making. Worst case scenario is people continue to worsen and end up being in the “sickest of the sickest” category. Perhaps it could be prevented if they would get the proper help. Best case scenario is they don’t worsen, but live a life with almost zero quality. That pretty much sucks too.

Not sure what the answer is. I do know I will keep looking and fighting and arguing and trying. It’s time-consuming and non-rewarding most of the time, but I know of no other way. So if you are one of those support people in my life, be patient when I need to talk and vent and talk and vent. You need someone to put a pillow on the wall sometimes when you are banging your head into it. But I would rather do that than give up or become so disenchanted or jaded that I just give up. My daughter deserves better than that. So does my client.


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Flashbacks

Sometimes we experience things in life and it becomes a trigger for something that happened in our past. If we are educated about triggers, we may be completely aware that it is happening. Having insight though, doesn’t always change the intensity of the experience.

Last year about this time of year, I did a series of blogs on the mental health system based on my experiences with my daughter Emily. The purpose was not bash the mental health or medical system, but just to share my experiences in hopes that it would be helpful someday to someone, and who knows? Maybe a small, tiny pebble of change might happen in the large mountain that needs to be moved.

Recently, I had another experience and I spent the morning being painfully aware that I was reliving that experience again. The details are different of course, but there are two things happening inside of me that are so real I could touch them.

First, is the utter helplessness and powerlessness I can feel as a human being. It is so strong it makes my head spin and it is maddening. I found myself again knowing what someone needs, but also knowing that I had no idea how to help her get it. She has been in and out of the mental health system for much of her thirty years of life. In my (professional) opinion, she has not ever been properly diagnosed and therefore not ever properly medicated. She re-lives her self-destructive cycle over and over again and then is filled with self-loathing because she can’t change herself. She has been decompensating at an accelerated rate over the last month and has become a danger to self and others. There is a spouse and a beautiful newborn in the mix.

There is literally no system in place to get her what she needs. She needs a very thorough evaluation. That’s not how the system works. But I was in the ultimate catch-22. I couldn’t do nothing. I couldn’t. That would be unprofessional, unethical, uncaring. I couldn’t let her go home. Yet I knew that putting her through the system might not help either.

I spent three hours with her, canceled all my other sessions. Called the mobile unit. I was scared, sad, worried, sickened because I care so damn much. I didn’t just go the extra mile. I went the extra six miles, because that’s just what I do. And in the end, her last words to me before getting in the ambulance were: I never want to see you again. Now I will embark on several days of documenting everything that happens. I will spend hours on the phone trying to get a different experience for her. And I am painfully aware that my chances for success are slim to none. The only analogy I can come up with, is that going to work is like walking into a room and purposefully banging my head on the wall. But I have to do it. I have to do everything I can for her, even though I am doubtful it will help.

Utter helplessness and powerlessness. What the hell do you do with that? I know I am doing my best. I know it’s not my fault. That isn’t the struggle. The struggle is the anger and pain from watching a system go wrong and a very real person and family suffering because of it.

The second part, is dealing with the last words. I absolutely get it. I know she doesn’t REALLY hate me. I know part of that frustration and anger is directed at me because she feels safe with me. I get that part of it is because of the mental illness. BUT IT STILL SUCKS. And I went through that with my daughter too.

Here I am, being the single, solitary person who is truly advocating intelligently in her corner, and I’m the bad guy. Yep, that’s what my daughter did too. No amount of self-talk and insight makes it hurt any less. I go through rapid flip-flops of sadness and anger. Why do I do this? Why do I repeatedly do this?

Because in my world, in my brain, in my head, in my heart, I have no other choice. Without thought, I dive in and I love and care.

But I have to tell you… THIS is why I want to work at Family Video when I grow up. I’m not even kidding.


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Grey’s Anatomy

I’m usually several years behind whatever popular thing is happening out there. I didn’t watch Star Wars til after 2000. I was a little better with Harry Potter and started watching before the last one came out. Having Frankie forced me to get with it a little sooner. Grey’s Anatomy is in its 13th season I think. I just discovered it a few months ago. Yes, I am addicted.

I can’t imagine watching it sooner than this though. At the end of every cliff hanger, I only have to hit “watch next episode” and I get to know what happens. I usually stop about five minutes into a show rather than the end. No waiting a week, and definitely no waiting for the next season to start. I get too immersed. I couldn’t take it.

I’ve watched almost 11 seasons so far. There are 24 episodes per season. Each episode is about 42 minutes. You do the math (I’m too lazy). That’s a lot of time to spend watching Derek and Meredith’s relationship evolve. Netflix has gotten me through too many lonely nights to count. Wait, let me say that just a little bit differently. Netflix has saved me from having lonely nights.

Last night though, well, it kept me tossing and turning all night. Imagine my shock and surprise when Derek Shepherd actually died. They even did that horrible scene where Meredith walks in the hospital room and crawls in bed next to him and you think he survived the surgery. Then you realize she is only fantasizing. Brutal reality is he really died. They actually let one of the main stars of the show die. I cried like a big baby after I recovered from the shock.

What an amazing portrayal of grief over the next couple of episodes. Every one of the main characters struggles over the next year in their own way to make sense of their loss. Bailey, Callie, April, Owen… Meredith continues to be a fascinating and complex character. She just takes her kids and disappears for a year. She couldn’t breathe so she just left until she could come back. I am just a people-dependent person, I can’t even fathom being alone to work on my grief for a few days, much less a year. Of course being incredibly rich and having the means to do such a thing is also convenient. I understood her, but I didn’t resonate.

That is until she returns home. There are several scenes of showing her lying awake in bed. The nights are always the worst. She would stare at Derek’s empty pillow and I could feel my gut ache with hers.

The person that made me sob though, was Amelia’s character. She is Derek’s brother and a tough nut to crack. She is a recovering addict and has lost every single male in her life. She witnessed her father’s murder as a child. She woke up to her addicted fiance’s corpse, and then delivered his dead baby nine months later. And now her only brother who she is incredibly close to has died. She spends an entire year cracking jokes about her dead brother.

Cut to the scene where she is pacing with drugs in her hand. Her moment has come. Owen appears on the scene and talks about how pain is part of life. We get through excruciating sorrow so that we can be ready for when it hits the next time. But it is truly life and is meant to be experienced and not avoided through drugs, running away, or whatever else we do to avoid loss. Thankfully, she tosses the drugs and then the loss hits her. It was so difficult to watch. I don’t know if she ever won any acting awards, but she should have. I sobbed out loud as I watched her grapple with the reality of a lifetime of grief. I believed she was a real person with real grief. I resonated with her and she broke my heart.

If I was teaching grief and loss, I think I would make my students watch those several episodes and I would be pausing it every few minutes to point out the lessons that were being put out there so poignantly. Grief is hard work, and everyone has their own way to wade through it. But one thing is clear, it cannot be escaped.