Episode 12 Shownotes - Dealing with Fear or Guilt From Heritable Conditions

You are listening to the Best Life After Cancer podcast with Deborah Butzbach, MD, episode number 12.
Well, hey there, my best lifers. Welcome back to the podcast. How are you? If you’re new here, welcome, welcome, welcome. So glad to have you here.

I have a few things I want to talk to you about. First of all, did you know that I am on Instagram? I am. You should follow me for sure. So just go to BestLifeAfterCancerMD, and you’re going to be able to find me. You should subscribe because there’s good info on there and some good reminders of what you’re working on here, what I’m teaching you, lots of good stuff. So make sure you come find me over there. Super fun – I was more of a Facebook person, and then my kids said I should get on Instagram so they could follow me, and who wants anything more than to have their teenage boys follow them voluntarily, right? And then when I ask a question on there, go ahead and answer me, okay? I’d love to hear from you guys. That’s a great way to get in touch by answering the questions, putting it in the comment section. That would be perfect.

We just got in from Maine today. It was a great week. We did 4 hikes on different days, I paddleboarded, swam, played cards and Settlers of Catan, and we ate out. That was such a treat. New Jersey has been shut down for a while, but with a group of 13, between my family, my brother’s family,and my kids, we were able to book a private room at 2 places, and on the deck at another place, so I felt good that we were keeping ourselves and our families safe. My husband and I both got covid tested before we left to make sure we kept everyone safe too, as we are both practicing medicine in NJ. Last night, we left at 3 am to drive home. My husband and kids slept, while I finished packing. I got a couple hours sleep and then we got up, got everyone loaded and set off . 2 adults, 4 kids, 2 dogs, 3 coolers, 6 bags, all in one suburban for 8 plus hours. My husband did the driving. I slept a bit, and brainstormed a bit. Now, I am home, we are unpacked, and I sat down to write about what I had been thinking about on the way home. It was nice – the kids slept for a lot of the drive, so I had some quiet to really reflect on where my thoughts were. This week in Maine was wonderful but a bit bittersweet. My family has gone to the same place in Maine since I was a tiny baby, and now we always meet up with my parents and my brother. It used to be my other brother as well, but sadly, we lost him in his 30’s to a heart attack. Every year, we grieve a bit, missing him more in this time that we always had together. But this year, something new is going on in addition to that. My dad, who has been a huge source of support and love in my life, has developed alzheimers, and is starting to show some changes. His mom died from it, too, so my thought about this is that we all unfortunately know what to expect. The last few days we were there, I was really grieving the thought that next year, things might be different. He might be more forgetful, might not be able to remember me or the kids. I was really down. I thought about it a lot on the way home, and was seeing the parallels between this and some of my patients with a strong family history of cancer, especially if they have a cancer themselves. I am sure you can relate – I grieve to watch my dad slip away from us, AND I also have so much fear that at some point the disease will take what I think to be my most valuable asset, my mind. I really lost a lot of the last day. I was tearful, and avoided my dad, because I didn’t want him to see me upset. I spent time dwelling on what might be, for him, and for me. Then on the ride home, I had a chat with myself, because I am doing what I always do – which is worry about things in the future that may never come. It is interesting, if you really start to see be aware of your mind, you will see that whatever you struggle with comes up in so many places. For me, it is time scarcity. Not on a daily basis, but over a lifetime. I have fears of loss of one of my kids, or my husband, or losing myself to alzheimers. I feel like there isn’t enough time to do all the travel I want to do, like the days and weeks and months pass too quickly. It is good to know, because the more I recognize it, the more I can work on it at all spots it shows up. For some people, they struggle with fear, or scarcity over money, or lack of self worth – but like so many of my clients – I find am living in the worst case scenario and allowing thoughts of scarcity to drive my feelings. That is the scenario where next summer, my dad can’t remember us, and then, far too soon, I begin to have memory problems as well. I imagine seeing him, and him not remembering me, and it makes me so sad. I think about how it would be for my kids to be in that situation with me. I catastrophize, and live in that future today. I feel all of the grief and sadness of that possible future today. My brain thinks it is preparing me, so that it will be easier then. Maybe it will, but only because I will have found ways to completely suppress it in the intervening years! And, I lose today. A perfect day on the lake with my family. Thankfully, my brother, in an offhand remark, reminded me that my dad’s dad had died of a heart attack at 65, and that my dad had for years thought that he would die in his 60’s of cardiac disease. Well, he is now approaching 80, has had an acoustic neuroma (benign brain tumor) treated with radiation, an aggressive lymphoma, treated with chemotherapy, and now has alzheimers! How much time did he spend, worrying about heart disease in his 60’s? How much time am I now spending worrying about both of us with Alzheimers? When he got lymphoma 10 years ago, before he started chemo, how would I have felt about a GUARANTEE that he would be here in 10 years and dying of something else? I bet I would have taken that guarantee in a hot second.

Thankfully, I got my shit together before we went out for our last family dinner. I sat by my dad, and held his hand, noticed that he ordered the French onion soup, which is something I remembered him loving since I was a kid. I chuckled when he said multiple times that the plate of ribs was too big, but then proceeded to eat every single one. I marveled a bit at him saying they were the best ribs he had ever had. I allowed myself to wonder whether they really were, or whether his forgetfulness let him experience every plate of ribs as if they were the best ever. I asked if he would start to make some videos for me, telling me about some of his favorite memories of me. It was a start towards getting out of my funk, and into a place of gratitude for now.

So today, that is what we are going to talk about. A three prong approach to heritable family conditions. How to live in abundance now, how to deal with guilt that comes with heritable conditions and how to prepare for the worst in a way that actually will make things easier then. I think this applies for people with heritable cancer genes, neurological conditions, and much more. We see our older family members get things, and we assume the worst for them and ourselves. But, we don’t have a crystal ball for any of us. There is no guarantee that we will have a bad outcome from what is in our genes. Even if the odds are 50/50 (which is close to the risk of getting a breast cancer if you have a BRACA 1 or 2 gene), this means that 50% of people will NOT have the bad outcome! We spend our lives preparing for the worst, even if the worst is not a guarantee. This is something so many people struggle with. The antidote to this is living in the moment. Let me repeat that in case you zoned out for a minute. The answer to living in fear of the future is shifting your focus to the current moment. What is fine now? What is perfect NOW? What do you not want to miss NOW? If you focus on now, you can see that it really is OK today. We don’t yet know about tomorrow. I will tell you one of the things I remind myself when I catch myself catastrophizing about alzheimers. Medical advances are coming fast and furious. What was the stuff of science fiction 30 years ago, is reality today. 30 years ago, we had no superfocused and image guided radiation, no targeted molecules that attacked things on cancer cells, very little in the way of reducing nausea and blood count issues. In 20 years, we may be able to actually alter our genes at a cellular level – whether it be ones that lead to cancer or ones that lead to alzheimers. Even if you have a family history and did develop cancer, if you have made it through treatment and are currently cancer free, living in the worst case scenario is not helpful. Why worry for 20 years when we are not sure that the bad thing will even come to us? There is plenty of time to worry when the bad thing is HERE. Worrying doesn’t prevent it. This is something I get coaching on myself frequently and one of the places I think it is the MOST helpful for cancer survivors. It is so helpful to see that my thoughts are not serving me, not giving me the best outcomes. A quote I love about this – I am not sure who wrote it – Life becomes more meaningful if we realize that we only get each moment once. If you use it up in worry, you don’t get it back. You don’t get a redo. There aren’t more cancer free minutes put in the bank as payment for the worrying you are doing. What I realized, not as quick as I would have liked, but as quick as I was able is - I don’t want to give up a whole day of my moments with my dad fretting about next summer. When you find yourself lost in future what if worries, bring yourself back to now. Ask what is going right now? What is perfect NOW? Would I hold my dad’s hand at dinner if I thought I’d have the same dinner in 6 months? Recognizing that he is 80 and his days are numbered, and I get to be with him and tell him how great he is perfect. Just the way it is. When you worry, bring yourself back to now. Find the perfect in now. Remember that worry is not giving you a better NOW.

The second thing we need to talk about with familial syndromes is the grief and guilt people feel if they passed on a gene that comes with a heritable risk. Guilt is what we call an indulgent emotion in this scenario. It keeps you stuck in the feeling, because it is not something you can usually solve. If you have no power to change something, (ie can’t go back in time, and choose a different fertilized egg, which if you did, by the way, would mean the child you have would cease to exist), then indulging in guilt is pointless. It does not fix the problem. It does not lead to better relationships. Often, it also does not lead to problem solving. It is one of the reasons sometimes that people who are at very high risk of a gene mutation choose NOT to get tested. Sometimes they think they would rather not have a mutation be confirmed, that they would then have to tell their family about. They would rather worry forever whether they do or don’t, than get the testing and deal with the knowledge – either that they do have a mutation and could pass it, or that they do NOT, and therefore, can NOT have passed it. One of the things I think maybe people don’t really understand is that even if they have a gene, we have two of every gene. One from our mother and one from our father. This means that even if one of your copies is defective, the other likely is not. This means you only have a 50% chance of passing on the gene to each of your children. I try to counsel about this. There may be guilt from knowing you passed a mutated gene to your children, but there also could be the freedom of knowing that you had it, and did not pass it on! Even if you have it, and did pass it on, there is also power in this knowledge. For instance, insurances covers MRI screening for all people with known BRCA mutations. Removing the ovaries may significantly reduce the risk of ovarian cancer in BRCA1 patients. Some patients, armed with knowledge that they have a BRCA gene, opt for bilateral mastectomies, significantly reducing their lifetime risk of breast cancers. Other testing for colorectal genes can lead to more frequent screening, like colonoscopy or endoscopy, increasing the odds of catching a tumor earlier. But even if the patients who are positive do NONE of these things, it may just be that they bring a new change or lump to a doctor’s attention sooner. Guilt is something that becoming aware of it, and seeing it for what it is, may help us to find the thought creating that guilt, which is something we do have the power to change. If your thought is that your child deserves a parent that didn’t give them a cancer gene, this is not a true thought. If it wasn’t your genes, they would not be the person they are. With time, and help, you can unravel the thoughts causing the guilt, and often find better thoughts that are more useful.

Finally, I want to share something that can give us something we can do to control how the future affects our families. I have done for my kids, and am encouraging my dad to do for me. This is something that I think makes all of this a little easier to bear. I see many people who end up getting sick quicker that they expect, and not having the time they thought they would have at the end of their life. When they looked and felt well, they did not do things to leave their children and family with a legacy. I am not talking about a financial legacy. I am talking about an emotional one. Something for those left behind to hold onto. Something to remind them of how much they were loved. Something that they can read or watch or hold on to or wear. This does feel really uncomfortable, but the time to sit down and write letters is not when you are sick and struggling. The time to film a video for your grandchild is not when you are on hospice, and look like death warmed over. It is when you are well. I know that life sometimes takes unexpected turns, both from my patients, and my 33 yo brother who died of a sudden MI. I know for certain he would have wanted to leave something in writing for his son, especially since he was divorced, and his ex limits our time with his son. I have, over the years, written letters to my kids. There are ones for them to open when they graduate highschool, college, graduate school, when they buy their first house, when they have their first child. I want them to know, even years down the road, that I had thought about that moment and what it would be like for us to be there together. What I would tell them, what advice I would give. As each event comes upon us, and I am here and well, I open the letter, read it and feel the blessing that I am here to read it, and that they are not the ones reading it. Maybe you aren’t a writer. You could do some videos on your phone and store them on your laptop. You could make a quilt for them to wrap around themselves like a hug from you. Paint a picture. Make a photo album. This is what I have asked my dad to do now with making some videos for us. I hope he will. I hope my kids don’t need the letters from me for many years to come. It sucked writing them. Each one made me cry, but I love to think they will have one the night before they marry. When they are feeling especially down. I am working on them for other family members who I want to have one to cling to. This whole topic may seem strange to put in a month where I am focusing on finding and creating joy, but the bottom line is this. We lose joy by focusing on some possible awful future. We open the door for joy by staying in the moment and experiencing the joy there that we would otherwise miss. I think Tim cook says it so well, when he says “Let your joy be in the journey, not in some distant goal”. We prevent joy in the journey also when we indulge in guilt. Let go of what you do not have the power to change. From Brene Brown, when we argue against reality – we lose. 100% of the time. Finally, create something for that worst case scenario future. This is what you can do. What you can control of the future. Then, let it go too. We can’t control the future any more that we can control the sun rising and setting. This is one of my greatest struggles, but I realize is also the source of the greatest strides I can make in increasing my happiness. If this is something you struggle with, I am happy to do a free minisession with you to talk about it. I am opening up my first coaching group in October, so if you want to be a part of that group, you can get more information and reserve your spot at Best Life After Cancer. I’d love to work with you either individually or as part of a group to help work through these tough emotions.

Have a wonderful, wonderful week. Have a wonderful, wonderful rest of your day and your week, and I’ll talk to you next time. Take care. Bye-bye.