It ain’t over

Pink ink…

So many days I sat in bed and said, “I can’t wait until this is all over”. For 9 months, I was always counting down to something. Four more chemo treatments. One more drain to come out. One more week of radiation. Four more physical therapy sessions. If I could just be done with the poking and prodding! (I am still waiting for that “final” surgery!) Then it will be over…or so I thought! What I have learned is that it is, in fact, never over.

When a person finishes treatment, they celebrate! Friends and family throw parties! (Thanks again!) People call, they send cards. Everyone breathes a sigh of relief. We can all finally “move on”. The doctors tell you that you have moved into the surveillance period, where you are just watched. The expectation of others, and the patient, is that life will go back to normal. They want…actually need…the dialog to turn away from breast cancer. The past how ever many months, are just that. In the past. But the reality is very different. I am 7 weeks out from radiation, and now understand, that I have a new normal. In some ways it is like being pregnant, and then having a baby. No one tells you what it’s really like to be pregnant. By the 9th month you just want it out of you. After the baby comes, you’re thrilled, but realize your life is changed forever.

That is also life in the cancer lane.

I have often said that no one really gives “cancer real talk”. I have tried to do that here, and on Twitter. So in that vein, let me tell you what it’s been like for the last 7 weeks. There have been many highs and vast lows.

Let’s start with the lows.

Over the last 9 months, my body has been used and abused by the rigors of treatment. Like most Survivors, I am still battling chronic fatigue and what is lovingly called “chemo brain”. Despite being months from chemo and weeks from radiation, these side effects regularly affect my daily routine. One day I can be out for hours with lil B, and the next, I won’t want to get out of bed.” I’ve been told this may last at least a year. I have little appetite. While my burns have stopped oozing, there are still places where you can still see the white meat.
Wearing a bra is still uncomfortable. My breasts itch on the inside where I can’t scratch. (Side note: how DOES that happen?!) I still have limited movement of both arms, though it is getting better. Thanks “Mayo Amy”! But the last 2 weeks have been the worst. You see, I have been suffering from massive headaches. Yet, I don’t have allergies, or migraines. These are the worst headaches I have ever experienced. Debilitating headaches that come with dizziness, nausea and shortness of breath. Two weeks ago it was so bad that I bum rushed my doctor’s office and, while crying, begged them to help me. Six hours of tests later, they had no clue. Being a cancer patient does have its advantages. When you are sick, they take it very seriously. “Has cancer spread” is the 1st question that everyone is trying to solve. A week ago Friday, I was scheduled for an MRI. I rearranged schedules, took the pre-MRI anxiety meds, and was ready to go! Guess what. If you have expanders, you can’t get an MRI because they have magnets in them. The MRI would cause the boob to explode. Fast forward 2 days to Sunday…5:30am. I go to the ER. Next thing I know, I am having a CT scan with contrast imaging. Did I mention I was supposed to be on a plane at 3pm? Or that it was Father’s Day? Yeah…

Scan, headache, nausea, dizziness, and more nausea.

And no answers.

I now know there’s a small spot on my brain. The docs don’t think it’s cancer, but they are not sure. Could it be signs of an aneurism? The docs aren’t sure. So we wait. We do more tests. (maybe a spinal tap!!) We wait some more. Two nights ago, in the midst of pain…a “7.5” on the Mayo scale of 1-10, I had a breakdown. “I just want to be well!” I cried to myself at 2am. “I just don’t want to feel pain anymore!” I cried into my pillow. Big B was 2000 miles away. Red ink…was asleep 1000 miles away. I wept alone, in silence. Ironically, it was not the fear of more cancer that floored me. I just want to NOT FEEL PAIN anymore. I don’t want to be in the hospital anymore! That is cancer real talk from a Survivor. Can I please just get a break from being…sick?

On the upside, I made the plane after the Scan! I didn’t get frisked at security because of my implants! Doctor Michele will be here in 2 days! Yay! I will feel better knowing that if my head explodes, she can pick up the pieces! I am spending time with my nieces and nephew. Five months ago, when I found more cancer, I didn’t know if I would see them again. Dramatic? Maybe. The truth often is.

Last week, I had the opportunity to speak at the Komen Survivors Conference. Fortunately, my head didn’t hurt that day! It was my 1st speech since “finishing” treatment, and I think I rocked it! However, I was dismayed, once again, by the people who came up to me afterwards saying they “didn’t know it was that bad”. I am learning to accept that, as with childbirth, people only hear what they want to hear.

Yes, I am firmly in the next stretch of the Cancer Lane. I am healing. I am learning to navigate this new course.

I am learning…It ain’t over!