The Scare + A Goodbye

I should start this post by saying, I do not have cancer again. (Let me repeat that for my own reassurance.) I do not have cancer again!!! But a few days ago, I wasn’t so sure.

It began last Thursday, when after PT for my lymphedema, I had a pain in my armpit. When I went to feel it, I felt a lump. I asked my PT if she felt it too, and she said she had. I panicked for a second but then convinced myself that it was likely a cyst or ingrown hair. I’ve had them before and they usually go away in a day or two.

But 4 days later, it hadn’t gone away. It didn’t even change size. I mentioned it to my husband, who felt it too and said to call my surgeon right away. I said that I would in a few days if it didn’t go away. But as the day went on, I started to get a pit in my stomach. I started to panic. I began wondering if this was all starting to happen to me again.

I tried to stay calm by reminding myself that I just had a clear MRI a month and a half ago. Surely that would have picked up on a lump that size. I also tried to reassure myself that I would have noticed a lump there before since I’m always stretching out the cords in my axilla.

But what if the lump was hidden underneath one of the cords that just broke. What if the cords have been hiding it and, now that they’re gone, it’s allowing me to feel it.

This thought began to take over. I was doing the dishes and suddenly I was hysterical crying. My husband came to me and asked me what was wrong. “It’s back! I think it’s back!”

It was a Sunday but I immediately wrote to my breast surgeon and oncologist. I didn’t care who wrote me back as long as someone did.

My surgeon got back to me that night, said that it didn’t sound worrisome but to come in anyway to have it checked out. I felt good that I had someone looking out for me but I was terrified that this was all happening to me again. AGAIN!

I started to make plans in my head. What would I do if I had to go through this all again. NO! I could not do it all over again; the surgeries, the chemo, radiation, all of the appointments… I don’t have it in me. But what if I don’t have a choice? What if it’s more than a lump? What if it’s all over my body? What if this is it and I find out that I won’t, in fact, get to see my son grow up? What happens then?

It’s all I could think about. Having to tell Oliver that the cancer was back. That I was going to be sick. And that, one day, who knows when, I wouldn’t be around anymore.

I was paralyzed by my emotions and fear.

My appointment with my surgeon was for Tuesday right before 1:00. My aunt came with me for moral support but we were both climbing out of our skins. I couldn’t believe that this was happening to me again. I tried to have some perspective but, when you have been through a trauma and it happens again, there is no perspective. Just tunnel vision and all I could see was cancer, cancer, cancer.

I was called into the office an hour late (they had squeezed me in). My surgeon came in to feel the lump. She felt it but said it felt like it was in the skin.

“No! It’s deep,” I said!! “It goes down deep!”

“No,” she said. “That’s not deep. That’s not a lymph node. It feels more like a cyst. But we are going to do a biopsy and a sonogram just in case. We can do it right upstairs. For peace of mind. Is that ok?”

I had known and prepared myself for this. I figured she’d want a biopsy. But now that she was actually saying it, I started to shake. But I agreed. I needed peace of mind.

My surgeon is on the 4th floor of my hospital and the biopsy is done on the 10th. So I hopped the elevator and there was no one in the waiting room. “Carrie Ellman-Larsen?” They were ready for me whether I was ready or not. My aunt had to stay in the waiting room and I had to go in alone.

So much of what we have to do with cancer is alone. I always knew that but it felt more vulnerable this time.

I entered the room where I was going to have my biopsy. I nice, small woman came in and began to search for the lump. First, she thought it was my scar. I redirected her finger to where the lump was. “I feel that. Ok.”

She turned on the sonogram machine and began looking around. “It’s mobile,” she said. “It’s hard to pin down.”

“Is that good?”

She found a smaller tool for the sonogram. When she found it, she pointed to the screen. “There it is.”

“There what is? What is it?” I didn’t dare ask out loud.  But there was something to be seen.

She then went to get the needle. She said that the needle would be even thinner than the ones we use to take blood. She said that she would stick the needle in, leave it in for about ten seconds to get a sample and then repeat the process.

My shaking suddenly stopped. Self preservation?

The needle pinched when going in, then there was an achy feeling while collecting the sample. But, thank goodness, it did not hurt.

When she was done, she took each sample and put them in between two slides. Then she said, “I’ll be right back.” The lab was literally in the next room. I would know within two minutes if I had cancer again or not.

The shaking began again.

I texted everyone to keep busy but also to let them know that the biopsy was done and that I was just waiting. I really needed the time to fly by. And it did.

A doctor walked in. “Oh, shit,” I thought!

“Well, it’s completely benign. It’s what we call ‘fat necrosis.’ It can happen after breast cancer surgery. It’s very common.”

I let out a huge sigh of relief and began to cry. It was over and I was ok. I didn’t have cancer. The fear just swept out of my body as if taken by a huge wind and was replaced by huge relief.

I went back down to see my surgeon who was happy as well but had a feeling that it was nothing. I go back to see her in six weeks for a follow-up, just in case. But already, the lump has shrunk in size significantly, although I still feel for it several times a day.

This experience has reminded me that we are never done with cancer, even if we technically are. We are imprisoned by our fear of recurrence. We know it can come at any time. We see it happen to our friends just as much as we see lifelong remission. We’re standing on a ledge and we don’t know which way we will tip. For now, my feet are still on the ground.

Which brings me to the goodbye portion of this post. As many of you know, Beth Caldwell passed away this week. I only knew her through her blog posts. I commented on hers, she may have commented once or twice on mine. But that was the extent of the relationship.

But I knew her best as a fierce advocate for Stave IV breast cancer. Despite her own pain, she co-founded Met-Up and testified for more research for Stage IV. She was an educator, a leader, a wife and a mother. Her daughter is in Kindergarten, just like Oliver.

I know she didn’t want to leave her family. She loved them so much. And when we see another one of our sisters pass, we see ourselves in them. We know that one day it can be us.

So, what are we going to do about it? Advocate. Demand money go to research for Stage IV. Donate. Hug our children. Do the things we love in life. Smile more. Take risks.

These are the things we can do to honor those like Beth.

Beth, thank you for all you have done. You will not be forgotten.

Fuck Cancer!!!!!!

The Grass Is Always Greener

I had another pouty session for myself recently.  I got the results of my blood test back from my oncologist and, for right now, they are reading as post-menopausal.  When your cancer is ER+, this is the news you want to hear.  You want your body to be making as little estrogen as possible.  I have be purposefully and likely permanently put into menopause.  While I suppose this is good news, I’m really very depressed by it.  I never minded getting my period that much.  It’s not like I liked it or anything (I had terrible cramps and crazy mood swings) but getting it every month let me know that my body was still working and healthy.  It was something I could count on.  I knew exactly when it was coming (often down to the hour) and it made me feel like a woman.

I haven’t gotten my period in nearly two years.  Sometimes I mention this and a woman’s first response is “Oh, that’s so awesome!!!!”  I can see why one would say that.  But the loss of my period is directly linked to my loss of femininity.  Not only is that thing that made me a woman, that I could count on every month, gone, but so is my ability to have more children.  And that just fucking sucks.

Sometimes I forget that, in reality, I’m really very lucky.  Yes, cancer was shit and it’s the gift that keeps on giving but, I’m here and, at least for now, I’m not going anywhere.  While I complain about being forced into menopause, I know that there are many women who wish they could be on medications like Tamoxifen or Zoladex (which I’m off of right now) to keep cancer at bay.  Women who are triple negative or diagnosed stage IV.  But sometimes I think about the women who are not ER+, (who would give their right leg to be on this medication) and think, well, at least they have a shot of having a baby (if chemo didn’t force them into menopause).  It’s stupid.  It’s insensitive.  But it’s how I think sometimes.

Sometimes the grass seems greener on the other side.

 

But knowing that in many ways I have it good, I don’t want to forget that this can change tomorrow.  My luck could run out and I might wish for the days of hot flashes and infertility being my biggest worry.  I know that at any time I could become one of the 30%.

So, to continue with this October breast cancer month thing that we’re in, I want to highlight a couple of organizations that are working on a cure for the only breast cancer that kills, stage IV.  While all breast cancer sucks and the treatments for it have the most awful effects, there is no cure for stage IV, only treatment and management.  This needs to change.  Like, yesterday!!!!!!  These organizations are fighting the good fight and are dedicated completely to finding a cure.  There are no fancy advertisements.  No pink boas or ribbons.  Just research, research, research.  If you have some money that you have been aching to donate, I urge you to consider donating to METavivor and Metup.

Here’s METavivor’s mission.

METAvivor is dedicated to the specific fight of women and men living with stage 4 metastatic breast cancer. At the time of METAvivor’s founding, no organization was dedicated to funding research for the disease and no patient groups were speaking out about the dearth of stage 4 cancer research.  While more and more people have taken up the cry for more stage 4 research, METAvivor remains the sole US organization dedicated to awarding annual stage 4 breast cancer research.

Here’s Metup’s Mission

MET UP is committed to changing the landscape of metastatic cancer through direct action. We protest and demonstrate; we meet with government and health officials and researchers; we support research into metastatic disease; and we speak out against the sexualizing of breast cancer. We are convinced that the deaths of women and men from metastatic breast cancer are a paramount issue, and we pledge ourselves to oppose all who deny the reality of the 522,000 people who will die from metastatic breast cancer globally every year while waiting for a cure to be found.