ATM Mutation, Part IV, My Dad
Cancer affects the entire family in a variety of ways. Cancer isn't a new subject in my family, but discovering that many of us carry the ATM germline mutation in the midst of my stage IV diagnosis changed and focused our thinking as a family. This series is my effort to demonstrate how each member of my family has been affected.
For this fourth installment, I interviewed my Dad, Tom Schroeder, who is an ordained minister and a Licensed Mental Health Counselor (LMHC). He has experienced the "caregiving" aspect of cancer in multiple relationships and has a unique perspective. My mother had early-stage breast cancer and has been cancer-free for approximately sixteen (16) years. I've been stage IV since March of 2017 and one of my sisters is positive for the ATM mutation and has had a prophylactic double mastectomy. I am the eldest of six (6) and only four (4) of us has taken the genetic testing to determine whether or not we carry the ATM mutation. So far, two (2) of the four (4) have received a positive result.
Q: Do you remember how you felt when you found out about Mom's diagnosis?
A: Vividly. I don't think anyone really ever forgets how something like that feels. I felt awful, horrible. Immediately, I wished that I was the one with cancer. Then, my religious background kicked in and I wondered if I'd sinned or my wife had sinned. Once I had a chance to apply logic, ask questions, and generally step away from the initial emotional response, these themes are the ones that resonated:
- My wife's cancer diagnosis was an opportunity to love my wife, to show her that she is not alone;
- My wife and I approach life with a partnership mentality and we applied the lessons of decades of partnership to the experience of cancer.
- I knew that my wife's emotional health would impact her recovery and this is something I could influence. Maintaining her emotional well being became my focus, my goal, my mandate.
- I knew that I didn't know what it felt like to have cancer, so I also saw my role as getting my wife to talk about her emotional health, sometimes when she didn't want to. I had to learn to listen, even when she wasn't sure what she was feeling so that I could be there with the support she needed.
Q: What was your biggest takeaway from the experience of walking with Mom through her diagnosis, her treatment, and into survivorship?
A: My wife's doctor told us in one of the first visits that she wouldn't die of cancer, that she would die of something else. I think this is something often shared with men and women with an early-stage diagnosis and it set the tone for our experience with cancer. There would be a beginning, a middle, and an end. We had to focus on getting through it. Once I had that straight in my head, I was able to focus on the future and help my wife see the future as well. In order to do that well, I had to make my self-care a priority. I did this in the following ways:
- Food - In the process of my wife's diagnosis, we became vegans. My wife is more strict than I am in following the diet, but I know that when I started eating more raw foods, avoiding processed food and chemicals, I feel better.
- I bought a motorcycle, something I've always wanted because I needed an escape. I needed an outlet where I was by myself and away from cancer and the need to be a caregiver.
- One of the things that I didn't expect was a colleague who committed to calling me each day during my wife's active treatment. His wife had gone through cancer and that's what helped him, someone to ask him how he was doing. Caregivers are usually ignored in the cancer experience and it was more helpful than I'd expected to have someone who was just interested in me.
One last thing we did at the end of my wife's treatment was we moved. I didn't expect how much the place where she experienced cancer would be traumatizing long term to her and interfere with her ability to move past the cancer experience.
Daughter's metastatic diagnosis experience
Q: What was different about learning that I have cancer from the experience with Mom?
A: My greatest fear in life is having to bury a child. I don't think there's any way to adequately describe how difficult it is to think about you dying before I do. In fact, do you remember what I told you right after you were diagnosed?
(Abigail) Yes, you said that you get to die before I do.
A: Exactly. That's the way it should work. I was also extremely affected by a gravestone I read when I was 23. It said:
"Remember man as you pass by
As you are now, so once was I
As I am now, soon you will be
Prepare for death, to follow me."
I've interpreted this differently over time, but generally, I think the underlying idea is to live in light of death, to work with a purpose, to look forward but always remember that the end of every life is death. When we're young it's hard to have this mentality. Over time, as death seems ever closer and we're reminded more often of our mortality, it can be more top of mind.
Q: How did knowing that we have the ATM germline mutation in our family change how you look at cancer?
A: Knowing that the people in our family with cancer likely have cancer because of a genetic issue that was present from birth was incredibly freeing. I didn't have to look for what was responsible or feel responsible. Knowing and understanding why something has happened is extremely important to be able to deal with the experience and the aftermath.
Q: Based on these two experiences of caregiving during a cancer diagnosis, what do you think is the hardest thing about being a caregiver?
A: Feeling helpless and not knowing what will happen. Feeling helpless is one of the worst things that can happen to a human being. Take cancer out of the equation and feeling helpless in any situation is excruciating.
Q: When Amy (my sister) found out that she had the ATM mutation, how did that affect you?
A: Clearly we have a variety of experiences within the family with cancer, but seeing the differences between your experiences and Mom's, I was immediately concerned that she was at greater risk than she realized. Also, as the spouse of a woman who chose a double mastectomy and seeing the experiences of others we knew whose husbands were unable to deal with the changes, I was worried that her husband wouldn't accept what needed to happen. The issues that someone has to deal with when making a decision to avoid cancer rather than living with the consequences of cancer are very different and I wanted to be as supportive as possible. I also felt a little hamstrung in that I felt that I knew what she should do, yet I needed to be careful about how I presented my opinions. It's a bit of a minefield.
Q: Looking at the overall experiences you've had with all three of us, how would you characterize how hope plays a role in each diagnosis?
A: Hope is very different in these different situations and requires different actions. With your Mom, the hope we had was focused on the life we would have after the cancer experience was over. Our lives have been irrevocably altered, but we were able to return to many of the same activities and interests. With you, the hope is not for you to be on the other side of cancer, but to fill each day. The response to cancer from someone who is terminal is LIVE NOW. For Amy, the hope is that the proactive action means she won't experience cancer at all. Hope is present in all three scenarios, it's just experienced differently.
Q: Now that cancer is part of our family's story, how has your perspective on cancer changed?
A: I've had a pretty significant paradigm shift about cancer. I learned that we all have rogue cancer cells in our bodies, but in some people, they are activated. Outside of the germline mutations, which we know account for less than 20% of the cancer diagnoses, there isn't a clear understanding as to why some people get cancer and others don't. So, with this in mind, I'm much more focused on preventative care. I place medicine and seeing my medical team in a much higher category now.
Caring for someone with cancer is hard
Q: Is there anything else I didn't cover that you want to say?
A: Caring for a person with cancer is hard and the experience can either rip relationships apart or cause the people in the relationship to get even closer. Cancer irrevocably changes a person and thus their relationships. I know that my relationships are richer and deeper for the experience. Facing death head-on with someone you love is profoundly life-altering.
Check out the first three articles in Abigail's ATM mutation series, ATM Mutation, Part I, ATM Mutation, Part II – An Interview with My Sister and ATM Mutation, Part III – Spouses.
How well do your friends and family understand your diagnosis?