I know no other way …

General 5 Minutes

In a recent appointment with my medical oncologist after we’d finished with the medical part of the visit, we began talking about support groups. She knows that I’m involved in a few, sometimes as a participant, sometimes a moderator and she often asks me questions about those experiences. My medical oncologist is also on the board of an organization that focuses on educating and supporting women in South Florida with breast cancer and has her finger on the pulse of a unique group of men and women.

As we talked about ideas and thoughts about what would be productive for what she was working on, brainstorming and interacting, she sat back for a second, regarded me thoughtfully and said “the way you approach breast cancer is unique, Abigail.” She’s also told my mom that I’d missed my calling, that instead of going to law school, I should’ve been a medical researcher.

I never know what to say when people like my doctors make comments like this and I responded as I typically do in these situations by saying “I just don’t know any other way to do hard things.”

And I don’t.

Nothing in my life has been so hard as dealing with Stage IV Metastatic Breast Cancer (MBC) and yet my life certainly hasn’t been a bed of roses, so I’ve had quite a few opportunities to learn and practice resiliency. Sometimes, as I survey what has happened and where I am now, sometimes I think that what I’ve experienced through the years has simply led to this place, this experience. I suppose it is always easier to see or imagine patterns in hindsight and I can certainly see the forks in the road, where I could have chosen something different.

But I didn’t.

And I find myself here.

I’m not saying that I chose to get cancer or did anything to contribute to that diagnosis, far from it. I mean that that my choices led to the circumstances/context within which I’m living with MBC. Where I am now, my living situation, financial situation, support system, etc., much of this is contingent on the choices I made in the decades I’ve lived before my diagnosis and cannot help but inform how I handle life in general.

So, what does it all mean when people say these things? What is it about what I’ve done to prompt these comments? And, more broadly, is this a good thing?

Before I opine on these issues, let me just say that hearing or responding to these sorts of comments does depend on the source. For instance, if a stranger or random person told me something like what my medical oncologist told me, I’d probably not think about it at all. But, when someone who has spent time getting to know me and is integrally involved in keeping me alive says it, there is a different weight. Or that’s how I think about it.

Anyway, I digress …

Here’s what I think my doctor and others are responding to:

  1. In law school, they taught us to look for the worst possible outcome of each case/situation and to prepare for that. Anything less than the worst outcome is then a lesser evil and preparation is already done. While it hasn’t always been healthy emotionally for me and real life isn’t like a litigation case, I’m always looking and preparing for the worst outcomes generally. Part of this preparation includes looking as directly as possible at the consequences of my death from MBC and to plan as unflinchingly as possible. While it can be excruciating, I have felt better once the plans and details are done and in place.
  2. Knowing that I am the one who cares the most about my medical care, I have consciously and intentionally taken responsibility for understanding as much as I feasibly can and looking towards next steps. Doing so has necessitated getting an education in the mechanisms of breast cancer on a cellular and molecular level as well as immersing myself in the current research. Having a plan for next steps and why has kept my stress and anxiety at a more manageable level and I think it helps in a variety of ways to keep focused on something tangible.
  3. I’ve always been a direct and precise person, seeking to carefully name and place in context my experiences. This has gotten worse since my MBC diagnosis since I honestly don’t have the time to avoid dealing with what’s really going on. Consistently, I work to cut through the “fluff” and platitudes to get to the bottom line details of diagnosis, prognosis, and everything in between. While this desire has meant that some (many) of the conversations are heavy, I find that I work better when I understand the parameters that my medical team is working with so that we’re all on the same page. My team has often been taken aback when issues that are often avoided by patients generally are dealt with head on with me.
  4. I think like an advocate 24/7. When a situation happens to me, I assume that I’m not the only one and work to get the details of why it happened and where the system failed. Understanding the breakdowns in the systems (electronic or personnel or other) and how to correct the issue has led to many a meeting with the administrators at my cancer center. This effort takes a lot of energy and I don’t always think I’ve accomplished my goals, but I keep at it and that’s often very different from other people.
  5. From a personality and training perspective, I am motivated by things being right and wanting to fix things that are wrong. This internal motivation means that I do keep going when others walk away or that I don’t mind taking on issues that might be combative. While I am seeing that my ability to do this on an ongoing basis has diminished since my energy levels are just not the same as they used to me, it is still my gut instinct to say something, report things and follow up.

I’m sure there are others things that my doctor or others might have been thinking about when she said this to me, but these are the items that come to mind generally. I wish I had a better response when people say this to me and perhaps I should ask more questions to find out what they are talking about. I do need to have a better rejoinder.

Here’s the thing … I think we each handle hard things in our own ways. We don’t become different people just because we’re dealing with something difficult. Who we are does shine through and I think that’s ok. Maybe there are tweaks that we could each make — for me, it’s not being so combative and hard-headed — but overall, I think there’s no right or wrong way to do hard things.

Now, it’s your turn … how do you do hard things? Pros/cons? What tweaks do you think would make your life easier/smoother?

Published by Abigail Johnston

I'm a daughter, a wife, a mother, and I've been living with Stage IV Metastatic Breast Cancer since March, 2017. All of the words I publish are my own.

Published

20 thoughts on “I know no other way …”

  1. Oh, Abigail, I am so envious of your relationship with your oncologist! “after we’d finished with the medical part of the visit, we began talking about support groups” and this “As we talked about ideas and thoughts about what would be productive for what she was working on, brainstorming and interacting” made me want to cry. Other than the medical part, my oncologist has nothing to say to me. She doesn’t even know what I do (author and journalist). She knows I enjoy walking only because it’s something in my life which has been seriously curtailed by the side-effucks (radiation induced fibrosis) of the radiotherapy. I feel we have absolutely no relationship at all – I have lung cancer, she prescribes treatments. I think I’d prefer it if I felt she actively disliked me rather than was totally indifferent to me. Sorry to vent!

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    1. No need to apologize!! I didn’t have this relationship with my doc early on. It wasn’t until I started running into her at conferences and other events that we began to connect on other things. She is also pretty unique in that she spends the time necessary with each patient and that means longer appointments. I’m so sorry that you don’t have the relationship you want with your doc — these relationships really can change the experience of living with cancer.

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    2. Mary, this makes me so very sad. A good relationship with your oncologist is essential. I see you are from my homeland, and understand that some doctors can be a little “cold” over there. I honestly feel you should search out another Dr who you can feel more comfortable and confident with. I don’t know if you have support groups where you are, but they can be helpful, with other women sharing their experiences and who their doctors are. The Beatson Cancer Ctr specializes in cancer care and has excellent reviews, but you may not live anywhere near its location.

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  2. Tweaks? I would love to rely on medical people to be honest about things – like what might happen to me next, or what side effects I might encounter with treatments or drugs. I’ve said before that I feel like I’m earning a Ph.D. in a subject I have not interest in. I would love to relax and rely on others for the details because I am just no intelligent enough to understand the deep details of this disease. Hard things? No choice but to lower my head and fight through it (yes, I’m using the dreaded battle language). Now about appraisals such as your oncologist telling you that you have a unique way of looking at cancer: I have a friend who praises me for being so strong. (Am I? Not when I’m alone on some days.) I brought it up with my therapist who pointed out why people see me as strong – I still look okay, I’m still here, I do what I need to do when often times I wish I could rebel and not take the meds or wear the stupid lymphedema glove and sleeve all the time. I did not choose to be STRONG but 1) I do have a strong personality and 2) what other choice do I have? I think it boils down to not just politely accepting a compliment and moving on (for me).

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  3. Wonderful post. For me I wouldn’t make it without my faith. And yet our tragedies have opened me up, making me much less dogmatic, less centered around theology, and more centered around love and acceptance. I have to work on fear meaning less of it and even when it is perfectly valid, to keep moving forward in spite of everything.

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  4. My oncologist has little time for personal conversations even though we do have connections outside the office visit space. Anyway, I fall back on my background as a teacher – gathering information, organizing it, forming a clear objective/argument, sometimes collaborating, and sometimes working on my own. When that’s unsuccessful because I’m still seen as a patient, I fall back on being pushy.

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    1. Sometimes being pushy is the only way. I work hard to educate everyone I encounter about the human element, ie my humanity, but I’m not always successful. Then I just ask for supervisors and go as high as I need to in order to get the issue resolved. It takes so much energy.

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  5. Here’s my thought about the doc’s perspective on your career choice – I bet the individuals and families who benefitted from your competent legal expertise and dogged focus on being their advocate are THANKFUL you didn’t go into medical research!

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  6. My sense from oncology team members is that there is a substantial chunk of the cancer pt population which, regardless of previous education or temperament, becomes quite passive and almost paralyzed once they enter the cancer care system. Their capacity to advocate for themselves, or to grapple with their cancer is just not there so they just show up to appointments, take the brochures, try to read them, don’t absorb much, nod and just keep doing whateve the team says.

    I’m the over-prepared pt with a binder of notes, printouts, clinical trials, flow charts, questions. I too am doing that unwanted PhD in my own cancer, and attending conferences and workshops on the latest research….
    On one hand I can’t imagine doing it any other way. On the other hand, there are increasing moments where I think “and to what end? Defending this thesis isn’t going to save your life…” I am considering becoming just a tiny bit more passive 🙂

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  7. My relationship with my physician is very much aligned with the way you interact with yours. We talk like human beings, to and not at one another – and he’s said on many occasions I learn so much from you. He’s enlisted me to review white papers that are not public yet, he’s asked me my advice on survivorship and on how to mine the internet and social media for the best voice of the patient. These are not your average questions or comments from a long-term oncologist and professor at an Ivy League university hospital. He’s warned his interns of my presence and what to expect and that I will give him honest feedback of their interaction with me and to be very careful to listen and not to ignore what I’m saying or asking…I have to hand it to him. After five years we’ve built something called trust. And he’s never taken my hope from me. Ever. He may not like what he sees but we find a way together to get through this mess. He calls me his “miracle kid,” endorses me to other physicians should they want to talk to a patient regarding patient centric programs and processes and he respects me for who I am now and wherever I was before cancer became the focus of my life.

    I tried to see another oncologist closer to my house and the hardest decision I’ve made for my life was moving away from him so now I just go for the drive and enjoy it best I can and share the testing and procedures with the hospital up here now that I’m established…I just hope six months not fully under his care didn’t create the shit storm of health problems I’m facing now. But we both know it’s partly responsible for the state of my union. Thank you for sharing your relationship with us. It reminds me of how fortunate I am and my gratitude for care and caring.

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