Last night I went to Teaism for Young Survival Coalition DC’s holiday party. There was a large group of women there, which was wonderful and sad at the same time. I sat across from a young woman who was diagnosed just 2 months ago and is now in the midst of chemo. She did not seem to be doing well emotionally – she was often unable to put her feelings into words and kept asking if she’d ever be back to her normal self.
I’m in such a different place right now than she is, but I definitely understood where she was coming from. That feeling of being thrown, violently and against your will, into a vortex of doctors, decisions, information, emotions, fears, anxieties, baldness, etc. – it can all feel unbearable and insurmountable at times.
I was at a loss for what to say with her to make her feel better, but another woman at the table said something I thought was really profound: “You will get through this. And, after you do, you’ll be sitting at this table comforting someone else.”
For me, I’m at the “sitting at the table comforting someone else” stage of my experience. But it’s humbling (and infuriating and sad) to know that at any moment, I could be thrown back into that vortex. And I think that’s why I enjoy staying in touch with groups like YSC, because I still need their support.
Posted in Breast Cancer, breastcancer, chemotherapy, Doctors, Personal musings, Survivorship
Tagged advice, anxiety, fear, inspiration, young adult cancer, young survival coalition, YSC
Wanted to share this quote that I’m finding particularly inspirational today:
“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.”
- Eleanor Roosevelt
It so perfectly sums up a lot of what I’m feeling in this moment – the need to go out and challenge myself in ways that I didn’t consider before. After living through a horror, confronting fear, not on my own terms, I am inspired to confront fear on my own terms. Making changes, traveling to strange places, discovering myself – all are scary but all are my choice and controlled by me. There are so many positive changes I want to make that I think I cannot make – because of finances, fear, security, etc. But I can’t let fear hold me back. I was forced to face fear before and I defeated it; now it’s time to take back my life.
A year ago today…
I was in the hospital recovering from my double mastectomy, which was April 5, 2011. I almost would have let April 5, 2012 go by without a thought but my boyfriend reminded me it was a year since my surgery.
As I sit here now, typing this, I don’t have any sense that April 5th is a monumental day in my life. It probably was when it was happening, but not now. I read about all these young women who have prophylactic mastectomies and achieve peace of mind that they’ll “never” get breast cancer. I’m glad for them, but even after my double mastectomy, I still fear getting breast cancer. Again.
Is this normal? I tell myself it’s just being realistic. People get recurrences, even after major surgeries to remove breast tissue. I hear about it more than I’d like to. In the shower, I still run my fingers over my skin to make sure there are no lumps. Every time I feel a weird soreness or sharp pain or other strange sensation, I have a fleeting fear the cancer has returned.
Peace of mind would be great. But a year after my surgery I’m still not there.
And now this has turned into a really negative post that doesn’t accurately reflect my mood today (It’s Friday! I am going home for Passover! It’s spring! Team Peeta!) so I want to also say that this fear of cancer doesn’t consume my every day and paralyze me (except when I’m crazy like with the dizziness episode) – it just exists. I think it’s something I’ll live with the rest of my life. Maybe that’s just the difference between previvors who have mastectomies and survivors who have mastectomies.
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.
One of the joys of spending time at home is exploring my childhood bedroom and finding old diaries and j0urnals I kept through middle and high school.
My diary wasn't nearly this sparkly, but it was still full of the teeny-bopper spirit. (photo credit)
The other night I was reading one from my last year of middle school and pretty much every entry was about a crush on a new boy who didn’t crush me back. OMG! The pain in my heart was palpable through my written words – and I felt a familiar twinge of the unrequited love syndrome that was all-too-familiar back in my teenage days.
Why do I write about this now? Well, after I put down the journal and laid down for bed, I thought a lot about how priorities change throughout life, especially when facing a mega-crazy situation like cancer. Back then, I
probably felt like I was going to die if Lenny* (*names have been changed to protect my innocent crushes) didn’t like me back. Today, there are times when I feel like I’m going to die because of cancer. It just puts things in perspective.
Also makes me long for the days when things were simple – though I’m sure my 13-year-old self wouldn’t have seen it that way.
Well, folks, I never thought this moment would come but the ball is rolling on my chemo treatment and it’s scheduled to start next week. Today was the first step in the process: an echocardiogram to get a baseline of my heart function and make sure it’s healthy enough for chemo. It was a totally non-invasive procedure – they put the sticky nodes on my chest and then used an ultrasound probe positioned on my chest to get an ultrasound of my heart. No big. Honestly the worst part is when they pull the sticky nodes off! I also have a scheduled meeting with my onc’s nurse tomorrow and a port placement next week. If all goes according to plan, I’ll start chemo next Thursday (eek!).
Leaving the building felt surreal after the echo. Every once in a while I have these moments where I still can’t believe this is my reality. I still can’t believe I’m a breast cancer patient, that I had a double mastectomy a month and a half ago, and that I’m about to go through chemotherapy. Does it ever really sink in?
The cold cap therapy is still on my mind as well as I struggle with the decision to do it or not. I think what scares me the most and still makes me keep the option open is the possibility of permanent baldness. I will talk to my onc tomorrow to see what the real likelihood of that is. If it’s a very small percentage, I’m thinking I might ditch the cold cap idea. Too much hassle. If it’s a higher percentage than I expect – well, maybe I’ll say “bring on the brain freeze.” Why is this decision so hard?
Check out the video below on how to use cold caps. I’m researching all I can before making this decision.
Posted in cancer, Clinical stuff, Doctors, Personal musings, Videos
Tagged anxiety, chemotherapy, cold cap, disbelief, echocardiogram, fear, hair loss
I promised a blow-by-blow of my core biopsies, but I don’t want this post to be a bajillion paragraphs long, so I’m going to post a good video I found on YouTube that describes the process of an MRI-guided core biopsy. Of course, it’s all very clean-looking and calm and bright, making it seem like getting a core-biopsy in an MRI machine is akin to getting ice cream with your family. It’s not. But the process is explained well so you know what to expect.
A recommendation for those of you preparing for this procedure: do NOT pore over internet message boards trying to figure out if it will hurt. It is not terribly painful, and I think the women who complain that it is painful must have had really insensitive radiologists. Which brings me to another recommendation – talk to your radiologist beforehand about your pain tolerance and tell him or her that you want them to test the anesthetic to make sure you don’t feel anything.
My radiologist was WONDERFUL and did this for me. Basically, before they put the needle in, they inject your boob with local anesthesia to numb you. My radiologist injected it, and then spend some time inserting the needle slowly and asking me to tell her if I felt pain. The second I did, she stopped and gave me more and deeper anesthesia. It went on like this until I couldn’t feel anything, and from there the procedure was totally painless. Pressure, yes; sharp pain, no. If you feel sharp pain, the anesthesia is not working or deep enough. Speak up. I have to say that I hardly felt the anesthesia needle at all. Really.
On the same day, I had an ultrasound-guided core biopsy and it was very similar except that I was on my back and not in an MRI machine. The worst part really was the anxiety and the moments when the radiologist tested the anesthesia and it wasn’t quite working. But it was a very brief sharp pain at that point, and immediately when I indicated I felt it, she stopped.
All in all, not as bad as I expected.
And now, I’m waiting for my results, which I’ll hopefully get tomorrow.
Last night, I felt deeply depressed thinking about getting my results. I almost want to convince myself that I have cancer just to lessen the blow if it is actually true. My mind conjures up images of sitting in the doctor’s office, hearing “We found cancerous tissue from your biopsy” and me just breaking down into tears. How can that statement NOT change your life completely? My boyfriend was trying to talk to me last night about some plans we have next weekend, and in my head I was thinking “Plans next weekend? Don’t you realize that if I found out I have cancer on Monday, all future plans are going to be put on pause?” I might have freaking CANCER. This isn’t like finding out if I have a urinary tract infection. This is CANCER. This is serious.
The best I can do at this point is wait. But I am absolutely terrified for tomorrow and as I go through this, I wonder why I don’t just have surgery right now to minimize my risk and my need to ever go through this in the future.
Posted in cancer, Clinical stuff, Doctors
Tagged biopsy, breast cancer, cancer, fear, GWU, MRI, radiologist, results, ultrasound, waiting