Barely Surviving Breast Cancer

I think all of my cancer is gone. At least I hope so.

I check in with one of my 5 cancer team doctors on average once a month. But even with being “out of the woods” , 8 months after my surgery, and 5 months after completing my radiation treatments, I am still, I have to be honest, miserable.

I am in pain without a break 24×7, as a result of Lymphedema, scar tissue ‘cording’ and radiation.

To help with the pain I have been prescribed Gabapentin by my Oncologist but it has had very little effect. It’s supposedly a long term pain manager with less adverse effects than that of your popularly prescribed opioids.

I am going to Occupational Therapy every week to try and get it under control. I have been given a February target date to possibly try a yin yoga class (gentle, restorative yoga). Who knows though if the pain will ever go away.

Beside the pain I also have significant mobility issues and worsening neuropathy issues. My incision has yet to heal, likely due to the radiation. You can see the quadrant on my torso where I was irradiated. Notice the brownish hue of my skin it left behind. You can also see the increased swelling on my left chest side from the lymphedema. On a positive note you can see below how much my skin has healed since last August.

Since my breast cancer was fueled by estrogen I will be taking Tomoxafen, an estrogen blocker, for at least the next 5 years and I hate it. Let me tell you the reality of how it has affected me:

  • I have early onset menopause.
  • I have hot flashes. My skin and hair texture have changed.
  • My hair is falling out in handfuls every day.
  • I have gained more weight.

I was doing so well with my workouts, then my lymphedema kicked in and knocked me on my butt. With a combination of lack of exercise, tomaxafen and diet, I have frustratingly put on more weight. Which leads me to…

My body image sucks.

Right now I do not have a loving relationship with my body and how I look, how I might look forever. I’m grappling with accepting that. And as a woman who loves fashion, I’m not used to how I look. I put together my outfits and they look far different from what I imagined or how they looked a year go. It makes me feel confused, embarrassed, frustrated and sad.

I feel irritable and down at times. Constant pain takes a toll on you, as I’m sure many of you know who suffer from chronic pain. It takes it out of you mentally and physically. I am fully aware that depression is a concern because of all the above, and depression being yet another drug side effect. I try to manage by meditating, petting my cats, going for a walk, but it’s tough.

I have many moments of fear that I’m going to get cancer again.

Radiation August 2015

Mastectomy, Reconstruction & Lymphedema Swelling, January 2016

Like many cancer patients, I have been told that much of these are ‘normal’ symptoms after what I have gone through.

To top it off, my Guillain Barre symptoms didn’t just magically go away either. So I’m still dealing with the awful extreme fatigue and peripheral neuropathy and migraines.

I feel constant guilt; I survived didn’t I? So many people have it much worse than me, probably many who are reading this have worse challenges than I do. I’m a terrible wife, I’m selfish, I complain too much, I can’t accept many social invitations, or I have to miss them. The list goes on.

So I hide it, a lot. I look better than I feel. I still have my sense of humor, and try to stay positive. I also have a tendency to be sarcastic and self deprecating; it’s my schtick and my way of coping. I mean, I have plenty of good material to pull from.

People see me now and naturally ask ‘how are you?”, and assume I am well because I look ok on the outside, and because I’m out and about. How do I even answer that question? I have no concise way of truthfully answering the question, nor do I think people want to hear it. At least in my brain they don’t. I generally just say ‘I’m fine, getting better’. Because as soon as I start to say something like I have pain issues, or lymphedema, or that it took all of my energy to get ready and be here; I can almost see them uncomfortably squirm in their seats. This isn’t a criticism, my truth just makes people uncomfortable and puts them in an awkward position. I don’t want to do that, so I would rather give the canned ‘fine’.

But how can people help if they have no idea what is going on? I spoke to a good friend of mine at lunch the other day, and discussed this essay topic with her. And while she agreed it’s a challenge and a balance to whom and how much to share, she said it’s impossible for friends to help if they are uninformed. She also suggested I select the people I know can handle the true answers. Good advice.

I don’t want this piece to come off as a pity party for me. But at the same time I feel a need to inform people of my, and millions of other women’s, situation. I don’t want to be preachy so rather than tell you what I think you should do I’m going to tell you what I’m doing or trying to do. These are my personal action items.

We have all seen the Facebook quotes with ‘everyone is dealing with something’. This being true, I am resolving to be more thoughtful, proactive, and kind to my loved ones, friends, family and community.

When I ask questions now, I am not just being polite, I am asking questions with the intention of learning and caring about that person . I want to celebrate and recognize the positive things happening in their lives, and acknowledge their struggles and determine if I can help them. In return I am going to offer that same level of openness.

I am taking more action. I am making the calls, sending the notes, and planning the visits. I do not just walk past a stranger in need.

I follow inspiring Social Media Accounts: Dalai Lama, LeanIn Org, Sheryl Sandberg

I am working on being more grateful for this body. I’ve joined a Lean In Circle to help me get through my rough patches.

I am regularly filling my own tank by breathing, meditating, and going out into nature.

I try to smile at people more.

Thanks for reading. I hope this post does as much for you or someone you love as it has for me.

xo Pdub

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Originally published at ishopiona.com on January 24, 2016.

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