Patient StoryMay | 10 | 2018
The Cancer Center’s Story Project is an effort to capture stories from our community of patients, friends, family, clinicians, and staff who have been affected by cancer in some way. This is Michelle's Story.
- Michelle was diagnosed with breast cancer in November of 2016 and throughout her treatment has learned the importance of taking care of yourself first. Michelle’s sister, Melanie, has been by her side every step of the way.
- "If you’re still and you listen, there’s this innate wisdom within every cell of your body and your entire being that supports you and holds you up."
"I have stage four breast cancer. When I was diagnosed in November 2016, it was stage three so it has progressed, and the journey has been a whirlwind of everything. It’s been a lot, and it’s gone so quickly."
"In November of 2016 I was a school counselor working with kids ages K-5, taking care of about 650 kids. And you know if they’re having a good day or a bad day or whatever, they want to come see Ms. Wong. I really was just managing everything, and making sure that everyone else was taken care of and at the end of the day not really taking care of myself. I felt like I was moving as fast as I could and trying to get as much accomplished as I needed to."
"I’ve been reading a lot of spiritual books lately, and metaphysically they say breast cancer is about people who are not taking care of themselves, or who are not allowing nourishment into their own lives, but instead are so outwardly taking care of everything else. In that respect, I think that I’ve changed a lot because now it’s selfishly about me. I’m not afraid to cancel on plans or have someone have an expectation of me that I can’t meet or exceed. I just take time to do me. I feel like for a long time there wasn’t anything that I wasn’t able to do. I had to always under promise and over deliver, where now I feel as though I don’t owe anybody anything and I’m just here doing me and living my life. In that respect, there has been a little more ownership and accountability for me and what I want to do. Rather than 'how can I help you' and basing my worth off of how I’m helping other people, I am just being and existing as who I am."
"I’m not working so I find that with a lot of my free time I’m reading and reflecting and contemplating life. I just feel like there are so many layers and I’ve been peeling back the onion everyday, regardless of what I’m going through. If you think every day is a routine and everything’s going to be the same Monday and Friday or the same as Tuesday and Wednesday, it’s not like that. I’m just happy to wake up and be alive every day. Before, I was up when the alarm went off. I had things to do, things to accomplish. But now if it becomes 12 o’clock and all I did was sit in my bed with my pajamas on and read a book, then I’m fine with that."
You are here with your sister Melanie; how has she helped throughout all of this?
"It’s very interesting; like I said I was working at a K-5 school, working as a school counselor, and Melanie had taken time off from work and was traveling the world. She was going to Southeast Asia and Bali and Thailand and taking pictures with elephants and getting $10 massages and Instagramming it all, while I felt like I was going crazy here. But, at some point there I got my diagnosis and she got on the first flight home and has been here ever since."
"Melanie comes to all the appointments with me and takes care of the communication with family. She makes sure that I don’t have to relive my days and explain everything that happened over and over again. She’ll take care of that, and the financial stuff. She runs my ‘Go Fund Me’ page and works with the social worker and figures out what kind of help and resources I can get. She’s been doing that since she got back. We weren’t living together or on the same page before my diagnosis, so it’s kind of been a relearning process where you go back to being two sisters living in a house together with mom and dad. And now my mom is overseeing the thirty-something year old. It’s just been an adjustment on every level, so we’re not living the same lives as before or in the same state as we were before, but I think there was some kind of divine intervention where everything had to be in its certain accordance for everything to be pulled together. Now we’re here in Boston, back in the Northeast, where all of my family is. I feel more connected to the resources and support here."
What do you feel has been the biggest shift mentally?
"I’ve always thought about life existentially before this. I felt like I didn’t have enough time to do anything action-based or implement things, like write a book, because you have bills to pay, you have deadlines, you have goals. Now, I feel like just having to slow down and having to deal with all the side effects from chemo and cancer and it being so in your face, it’s relentless. It doesn’t go away. The last thing that I was dealing with was neuropathy. I couldn’t feel my hands or my feet and I still can’t feel my hands or my feet so I’ve been having a lot of difficulty walking and getting upstairs. I couldn’t tie my shoe laces, I couldn’t open a bottle, I couldn’t put a key in the door, couldn’t put my socks on, couldn’t zip my jacket. I couldn’t open a door knob so I couldn’t go anywhere; you need to be able to open a door to step up a curb, to be able to navigate through the streets and not get hit by a car because I couldn’t put one foot in front of the other as quickly as I used to do."
"So just going back to basics has helped me to slow down; I feel like it’s enabled me to trust my inner guidance and intuition more. Before I had to control everything. Everything had to be lined up and in order. It had to have a certain picture and now it’s like the picture just fell apart so you’re just trying to scramble and put everything back together. It never works when you try to force it, but if you’re still and you listen, there’s this innate wisdom within every cell of your body and your entire being that supports you and holds you up. I feel like I know that now, whereas before I thought ‘oh yeah in theory that’s great, the universe is love and we’re all here on a divine mission,’ but I feel it more than I think it now. I feel like it’s moved my association with life from the head more to the heart."
"I definitely want to write a book. Before this I was very active. I used to run marathons, I used to do triathlons, I did a half Iron Man. I was raising money for people with cancer through ‘Team and Training’ and the Leukemia and Lymphoma Society. Physically I’m not able to do that anymore, so then the counselor in me thought ‘okay what coping skills can I implement now?’ Now I think ‘okay I need to write.’ I needed to release my emotions, but then the neuropathy came and I couldn’t type, I couldn’t hold a pen. It comes to a point where you just throw your hands up in the air and say ‘forget it, somebody needs to take care of this, I’m just done.’ I think that the second that you release and accept what is in front of you, all the answers just come. It sounds silly but they just do."
What’s been your greatest struggle since diagnosis?
"Well I think we touched upon it a few times because it’s been the most recent, the neuropathy. I could deal with ‘I’m a runner but can’t run, I can walk still.’ But then it was ‘you can’t walk because you can’t feel your legs, and when you sit down you can’t get back up.’ The brain’s not connecting with the nerves and they’re not firing, and then going through all these rounds of chemo, low white blood counts, low red blood cells, blood transfusions, can’t get off of the couch type-thing. The weather was bad and I couldn’t even go outside. Every time I go to the hospital I get a nose bleed. Just letting go of the physical coping skills and getting more into writing, and then not being able to write and being stuck again."
"Having curve balls thrown at you has enabled me to stop thinking and kick in with that inner wisdom that my body just knows. A flower blooms because it just knows, there’s not a reason, you can’t figure out why it’s doing what it’s doing. There’s this universal flow of energy that I feel is a tapestry of life that connects everything. If you stop resisting and stop doubting and fearing that, it takes over and it’s more powerful than if you try to control it yourself. So, for me, my greatest struggle was the neuropathy because as soon as I couldn’t run and couldn’t walk, letting that go and letting something else take over has been a huge learning curve for me. It’s actually lifted this cloud where I’m not afraid of anything."
"In the beginning I had this fear of dying, I had this fear of going into a slow paralysis from the neuropathy because it has this stocking and glove effect where it starts in your toes and fingers and begins to move up. It got all the way to the point of my knees and elbows. Really, you think about it like, ‘what do you need your thumbs for?’ Everything you don’t think about, I’ve thought about because it’s been taken away. It’s just a gift to bring you back to the present and to take you out of your head, if you can call cancer a gift."
Do you have anything else you would like to add?
"I think I would say for anybody who is diagnosed that a lot of people will tell you ‘this is my story’ and ‘this is my friend who had the same thing as you and this is what they did,’ or ‘this is what this one’s mother did.’ No journey is the same, and I feel like we all are spirits who came here to experience the ‘human experience.’ And we all came here for different reasons, for learning different things, so the reason why I came here may be different from the reason why ‘X,’ ‘Y,’ or ‘Z’ came here. Our outcomes are not going to be the same, our outlook is not going to be the same, the result is not going to be the same, and even the approach is not going to be the same. But for people to not look externally for those answers, and understand that there’s this feeling inside, and if you can connect to it, then it will provide you with what you need, rather than looking for one source or oncologist, or one hospital, because there’s not one person that’s going to be able to fix it or heal everything. I feel like we’re all self-healers."
If you’re still and you listen, there’s this innate wisdom within every cell of your body and your entire being that supports you and holds you up.
This interview was conducted on March 1, 2018 and has been edited for clarity.
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