Beyond the headline

Pink ink…

What a difference a week makes! I think I may be making some progress, taking a step forward again towards healing! Only time will tell. But let’s back up a bit.

Whenever you get a bunch of Survivors together, you inevitably get certain questions. They include “When do you become a survivor?” (That’s another post!), “How has your life gotten better since you got cancer?” and the more generic “How has your life changed since you got cancer?” If you are ever a part of these types of conversations, you will hear responses all over the map. It is really an educational experience. One thing that always comes to light is that a lot of Survivors fear going to the doctor for years after they technically “finish” treatment. Others put off surgery or getting follow-up appointments, because they are just tired of being cut or prodded. (I can definitely relate to being tired of the constant prodding) But I guess I am still too close to my “journey” to dread the doctor. In fact, over the past few weeks I felt like I needed my doctors more than ever.

As I have mentioned before, I have been experiencing mind numbing headaches. The way I described it to my doctors and family is that when I was being treated for breast cancer my body hurt from the TREATMENT not the sickness. Now my body hurts because of…SICKNESS. When my doc said it might be more “disease”, I was like “Figure it out. I can’t stand the pain.” What is the spot in my brain? Why is this happening? Last week, I had my worst night yet.

The next day, I told my husband and Red Ink Michele that I thought that perhaps I was dying. I felt that my body was finally giving up. That is what I felt. It was one of the most difficult things for me to consider, and then share.

I am not being dramatic. I have felt this for a week. I sat up late at night and thought about how ironic it would be that after everything I went through it would not be the actual breast cancer that killed me. How ironic will it be that after everyone celebrated “the end”, that it would in fact be “the end”? No doctor was telling me that I wasn’t dying. The tests said it didn’t appear to be cancer. But I still had to see a neurologist. There were no answers. We only told a few people that it wasn’t cancer, b/c we knew that the other part of the story (that I was very sick) would get lost behind the headline of it probably not being cancer. We didn’t want more celebration. We wanted answers.

I can’t describe how a person sits in the space of realization that they are dying. Of course Big B and Red Ink were supportive and said we shouldn’t think that way. AC urged me to just sit still! I indulged them as they hypothesized about what was going on. But at the end of the day, I could feel my body shutting down. My pressure was steadily rising. The headaches were progressing. My vision was blurring, and the nausea was coming more frequently. I could go on and on about my symptoms. On the other hand, I had to keep going! I pulled out those damn Pink Big Girl Panties, and went to Lil B’s performance, I went to my chapter retreat, went to celebrate a friend’s birthday. I still tried to write. After each activity, it was getting harder and harder to recover. More people were commenting that I didn’t look myself. (There were others who could only see that my hair was growing back! Lol) But, I started to outline in my mind the letters I needed to write to my family and friends. I was starting to “prepare”.

Yesterday we went to the neurologist. She was as kind as all my Mayo doctors have been. She put me through a battery of tests, some of which were mental tests. (I didn’t pass all of those! I’m chalking that up to chemo brain! Lol) She confirmed that I still have a good deal of neuropathy from chemo! Who knew!? Has nothing to do with my headaches. Ahh. Just add it to the list…

Headline: It was confirmed! No cancer!
Headline: I am not dying…today!

Relief! I think B and I took a full breath for the 1st time in a month. I have some other stuff going on in my brain. But it doesn’t seem to have to do with the cancer. The Cancer treatment? Perhaps. But at least now we have an answer! The solution?

Needles in the brain!

Yes! You read correctly. Two needles inserted into the brain, then moved to 4 different angles as they injected medicine. Talk about getting probed! I hope the people in the next room weren’t too shocked by my screaming. So now we wait to see if these meds will work. Again, what a difference a week makes! I will keep you posted!

Maybe now we will be able to move…beyond the headline!