3 Year Mastectoversary

April 5th marked three years since my initial surgery. You can read the first post about my double mastectomy here, if you feel so inclined.  I didn’t even realize it was an anniversary until the day after; it just goes to show how much distance time can provide. At my oncology follow-up this week (I see her every 6 months now), my doctor talked about recurrence for Triple-Negative Breast Cancer, and cited some information about the highest likelihood of recurrence being in the first 2-3 years from diagnosis (more here). I guess it feels good to know I’ve reached that point, but I have a hard time breathing easy just because of some studies. I still feel like my risk of recurrence is high and I’m not sure that will ever go away.

I felt, on this date, that it was appropriate to share a recent NPR article about NOT having a double mastectomy: Why My Wife Didn’t Choose a Double Mastectomy. Of course, the woman in this article does not carry a BRCA mutation, so her situation is different, but I did want to highlight that mastectomy is not always the best choice, even for people WITH a mutation. When I first learned of my mutation at age 22, I opted not to have surgery and I didn’t plan to even start thinking about surgery until I was at least 30. Looking back, even though I had cancer, I wouldn’t have changed that decision. I think a lot of women get vilified for choosing not to have surgery, and I think it’s important to hear that they are not alone. The choice is so personal and people should be supportive no matter what. 

February Drama

We’re coming up on the one-year anniversary of my breast cancer diagnosis. I’m not exactly celebrating for a couple of reasons… the biggest being the nerve-wracking week that I’ve had.

Last Wednesday, I came home from work early because I was too dizzy to function. Best way I can explain it is vertigo – and it all started when I woke up. It was extremely troubling and my oncologist set me up with a general practitioner to see the next week, but by dinnertime I felt much better so I didn’t make the appointment.

The next day I felt fine and the next. But over the weekend I discovered a hard ridge-like area on my right breast and started freaking out all over again that the cancer had returned.

On Monday I was able to see my oncologist and she was not at all concerned, but she let me get an ultrasound for peace of mind. It all looked normal. Phew – one disaster averted.

Then Wednesday night again I had dizzy feelings – not as much vertigo as slight nausea, lightheadedness, coldness, and not feeling “normal”. This morning I woke up still feeling nauseous, which went away quickly, but I felt a lot of pressure in and around my head – migrating from behind my eyes to the back of my neck and, currently above my right ear.

I am totally confused about what is going on in my body, but I know I don’t feel right and I am worried and scared. My immediate thought, thank you breast cancer, is that I have a brain tumor. Such a drastic conclusion for what are probably benign and uncomplicated symptoms, but that’s what having cancer will do to you.

To relieve my fears (best case scenario), I am having an MRI tomorrow.

I should be happy – I’m going to get this checked out, find out it’s nothing to be worried about, and move on with my life. But I’m scared %&*@less and it’s making me feel like a crazy person. I had surgery to remove the cancer, which was stage 1. No lymph node involvement, no signs of spread anywhere. I had aggressive chemo. There is really no reason to believe that I have a tumor in my brain, other than these weird dizzy spells, which could be caused by a myriad of other minor disorders.

My doctor again says she isn’t terribly concerned – my symptoms aren’t consistent with what she’s seen in brain cancer patients. More like a low-grade viral infection. My dad agrees.

But I’m having the MRI anyway, despite the professional advice and my own fears. I keep having these visions (not literally, or I’d be even more concerned about a brain tumor) of sitting at my parent’s house tomorrow as I receive the news that I my MRI showed a brain tumor. It feels like last March all over again, just thinking about how drastically my life is going to change (AGAIN) if that happens. The weather woman on my TV drones on and on about cold fronts and all I can think is, “The whole world will melt away tomorrow if I find out that I have metastatic cancer.”

What is one supposed to do with that news? And how is one supposed to live a life where every “off” feeling leads to the unshakeable dread that cancer has returned or spread?

I guess we take it one day… one test… at a time. My ultrasound was fine. My MRI will most likely be fine. And once those are out of the way, maybe I can stop worrying, at least for the next three months.

A nightmare

The other night I had a terrible dream. I haven’t remembered a lot of my dreams for the past couple of months, which is strange because there’s so much craziness in my life, I’d expect my subconscious to be working overtime. But this one was vivid and made me wake up in a cold sweat:

Photo credit: me and the Pixlromatic app

I was living in a run-down apartment, old-fashioned apartment, reminiscent of

those in Northeast Philadelphia. Our electricity was flickering and it was getting late, so I went down a set of stairs to lock up. The entrance I was locking up was guarded by several layers of doors – a screen, metal bars, a glass sliding door, and maybe more that I can’t remember. Before I could lock everything a man showed up at the door. He was dressed in a police uniform but I felt an inherent sense of danger – he was coming to kill me. I worked on the doors as fast as I could to fortify the entrance to my apartment but I couldn’t get any locks to fasten fully. I was panicking but kept shutting the doors and turning the locks as far as they would go, to buy time. At one point he even reached his hand through the bars on one door, seeming to help me shut and lock another door. Strange, but I continued figuring he was teasing me. When all of the doors were shut I scurried up the stairs, but I had such trouble with the last few steps – it felt like I was on a fast-moving escalator that kept going descending before I could get off. Finally I made it to the top step and could see into my darkened apartment, but I knew the man was getting through the doors below and coming after me.

That’s when I woke up and of course my head immediately thought about what the dream means in the context of my life. My big battle right now is against cancer. I’m doing all I can to lock it out of my body, but my biggest fear is that it’s still there and that I’m going to find out in the future that it’s invaded me, metastasized to a point that I can’t control. The never-ending steps remind me of how I feel right now – my last infusion is so close and I can see the end of treatment but I know things will never quite end. I might never reach that top platform of being completely cancer-free in my life.