breast cancer, life, Uncategorized

Surviving

“You’re having issues with survivorship. You feel like you’re in limbo, rightfully so, and you need to think about talking to someone.”

I saw Dr. H yesterday. It wasn’t for a follow up. It was for a freak out.

There’s a lump right below the skin of my left breast at the 10 o’clock position approximately 3 cm from center. I called her office Monday morning. I had an appointment Tuesday afternoon.

She did a complete physical exam. Then, she did an ultrasound. She is confident it is an area of fat and swelling. The physical exam felt nothing concerning. The ultrasound showed nothing concerning. She noted some changes due to radiation and looked closely at the one burned area I still have. She emphasized everything felt and looked normal. Then, when she was done with the exam, she asked the question:

“How are you doing?”

Floodgates. Open.

I feel stuck. I’m not on chemo. I’m not on radiation. I don’t see doctors every week or every three weeks. I don’t understand how we’re keeping my cancer at bay. I feel like I put myself through the tough chemo treatment for no reason because the cancer wasn’t gone, so I know my chance of reoccurrence is frighteningly high. Why did I have to do radiation when no cancer showed up anywhere but the sentinel nodes? I don’t want to do the DIEP flap reconstruction anymore. I’m exhausted. All. The. Time.

When I finished, Dr. H settled back against the counters and brought me to tears.

“I’m so proud of you,” she said. “You’ve been through so much over the last nine months, and you’ve done chemo, surgery, radiation, hormone therapy, targeted therapy without stopping or giving up even when you felt it was too much. Now, let’s talk about that list.”

The first thing she addressed was the chemo not killing all of the tumor. She stressed that “the bad actor,” her phrase for the HER2 + cancer, was completely gone. The chemo targeted the bad actor, the proliferation high, aggressive, very life threatening, bad actor. Her exact words to me were, “I will not sit here and let you think you put yourself through that chemo regiment for no reason or that you failed the chemo or vice versa. The chemo did its job. You did your job. We got a surprise. A crappy surprise. But, the bad actor was gone. That matters.”

Then, she addressed the chance of reoccurrence. It’s higher than I’d like, but it’s what I already knew. I have some factors working against me. I’m young. Those diagnosed with breast cancer before the age of 40 have a higher chance of reoccurrence because younger ages tend to have more aggressive subtypes (that would be me). I have (had?) an aggressive subtype. It was Stage 2. It was in two lymph nodes, which led to my radiation question. Dr. H said its job was to kill any disease left behind, anything in the lymph channels, and to radiate any of the breast tissue she couldn’t get because there’s always some tissue left.

As far monitoring, Dr. H told me that is her job, my job, and Dr. O’s job. My job is to watch for changes, and not just with my chest. Dr. H told me if there’s a reoccurrence, I’m likely to notice it first. I need to pay attention to my body, but I need to learn what are my new normal aches and pains so when something abnormal happens, I know to get checked out. I asked her what do I do if I’m not sure. She laughed and said to call her. She told me it’s her job to know how my chest and nodes feel now and to monitor for a local reoccurrence. She told it’s Dr. O’s job to monitor for distant reoccurrence, or the M word, which Dr. O would do by watching my blood work and ordering scans if needed.

After, she tackled my reconstruction comment. She told me it is highly unlikely Dr. L will consider me a good candidate for implant only reconstruction. My radiation was extensive, and she could pinpoint areas where my skin has thinned on my left side. She told me she felt certain I would experience capsular contracture and asked why I’m leaning away from the DIEP flap now.

I don’t want to spend all summer recovering from major surgery. I don’t want to risk missing the beginning of next school year.

Dr. H nodded and asked, “When are you going to take some time for you and what you need?”

Never. I don’t know. My nature is to care about others. I told her I’d taken off last Friday, and she, astutely, commented, “You mean a day for treatment?”

Okay. I get it. I’m not taking care of me. And? I don’t know what to do about it. So came, “All of this comes down to survivorship. You’re struggling with how to transition from cancer patient to survivor.”

I smirked when Dr. H said that. I don’t feel like a survivor. I feel like the walking wounded constantly waiting for the next shoe to drop.

“You’re having issues with survivorship. You feel like you’re in limbo, rightfully so, and you need to think about talking to someone.”

She’s not wrong.

She asked me if I’d been given access to a social worker at Baylor. I told her no. She told me to get dressed and meet her at the check out counter. I did, and she walked me across the hall to meet the social worker and licensed counselor who works with Dr. H’s patients and the patients of the two oncologists in the building. Dr. H introduced me to E and told E I’m struggling with the transition to survivorship. Then, she hugged me and ran back to her office. All in all, Dr. H spent almost an hour with me. I never feel rushed by her or that I’m wasting her time or that my questions or feelings are stupid. She is truly one of the best doctors I’ve ever known or been a patient of, and I’m so grateful to Dr. B for setting me up with Dr. H.

I didn’t have long to talk to E because I needed to pick S up from rehearsal, but the time I did spend with her was helpful. She asked me if I’d been given anything about survivorship. Nope! She told me if she had to guess, I’m exhausted, I’m trying to get back to normal, I’m anxious about reoccurrence, and I have some physical struggles from my surgery.

Check. Check. Check. Check.

E told me about the Young Survivors Coalition, gave me a navigator book on survivorship for young patients, and gave me three other books I’m to read in my spare time. Then, she told me, when I’m ready, call her. Take some time and think about things, and when or if I’m ready to talk, call her and make an appointment.

I don’t know that I’ll ever be ready for that step, but to finally have some resources for a young breast cancer patient is amazing because I’ve been looking for information for young patients since August 2015. I’ve already read one of the books.

Last night, I talked on FB with a friend who has, unfortunately, recently joined the breast cancer roller coaster, and I said “As long as we’re alive, we’re surviving.”

We just don’t know how long survival will be, and the young patient’s survivorship navigator I read tonight put it into perfect perceptive: We’ve lost our sense of immortality. Sure, we know we’re all going to die at some point, but when you’re in your thirties, death seems waaaaaay far off. That’s thirty, forty, fifty, sixty, maybe seventy years down the road! Right? Sure it is….until you hear the words, “You have _____ cancer.”

Immortality smashed. Reality checked.

So, yeah, I’m struggling with the idea of survivorship. I’m struggling with my loss of immortality. I’m struggling with my new normal.

But, at least I’m trying.

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2 thoughts on “Surviving”

  1. Yes! I am so glad she saw YOU and what YOU need. I am proud of you for taking the next step and considering getting outside support. ..even if it did take rushing you and basically not leaving any opportunity for you to say no. You need that! Bossy people need bossy people sometimes. IJS…not that i know that firsthand. ..:)

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    1. It’s like you know me or something. 😉

      Dr. H really is one of the best doctors I’ve ever met. I’m so glad to be a patient of hers.

      I’m going to think about it. That’s all I was willing to tell Dr. H. I’ll think about it.

      Like

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