A asked me a question last week that I’ve been turning over and over. “Why do you take everyone else’s worries onto your shoulders?”
Then, I saw a quote image on Pinterest that said “I wonder how much of what weighs me down is not mine to carry?”
So much of what I take on is not mine to carry…so, no more. Or, no more to the best of my ability.
After my last panic attack, I took a long, hard look at myself. I didn’t like some of what I saw. I don’t like that I’m dangerously close to becoming my hypochondriac grandmother. Don’t get me wrong. I deeply loved my grandmother, but she was a hypochondriac of epic proportions. I don’t want to be like her where every little thing is something I perceive to be fatal (btw, my grandmother died in her sleep in her nineties). Yes, I had cancer. I don’t right now. I will never stop worrying about the cancer coming back, but for this moment, I am no evidence of disease. That matters.
I owe it to myself to believe I am cancer free, and my scumbag brain does not get to win with whispers of my greatest fear, of the cancer returning.
I owe it to myself to celebrate that exactly one year ago today, I had my first chemo treatment. It was hard. Chemo was hard. But, I’m still here, one year later. I’m still here, done with treatment.
I owe it to myself to remember the wisdom of Albus Dumbledore: “Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.” There’s been a lot of darkness over the last year. I have nothing to lose by turning on a light and finding some happy more than I’ve allowed myself.
I owe it to myself to stress less over things I absolutely cannot control. For years, I’ve lived in a constant state of stress, much of it, my own doing. It’s beyond time I find ways and force myself to stop. I have nothing to gain by stressing and worrying about so much of what I stress and worry about because there’s zero I can do about most of it.
I owe myself. I rarely allow myself to think about what I truly, really, deeply need. And, what is it?
This post remained blank for awhile. I wanted to put an image or something on it, but I couldn’t think of anything to really that visualizes how I feel right now.
It’s weird. I thought I’d feel more relieved.
My phone rang a lot on Monday. My phone rang a lot on Tuesday. Every time it rang, my heart sank a little. But, every time it rang, it was my realtor, who I like a lot and have become friends with, and we talked on the phone a lot on Monday and Tuesday, so my phone did ring, but the name I dreaded on my caller ID was not there.
No calls from Texas Oncology/Dr. O.
Dr. O said if something was on my x-ray, I would hear from her by the end of the day on Tuesday. Me being me, I waited all day today, too, before taking an easier breath. She told me no news would be good news.
I see strength as the ability to put one foot in front of the other, physically, mentally, or emotionally, when the very last thing you want to do is put one foot in front of the other.
It’s been very hard to put one foot in front of the other for me, metaphorically speaking, over the last two weeks. Surgical complications, moving, moving complications, and seeing Dr. O. My mind built each event into huge mountains, each felt insurmountable, but every morning, I got up, got dressed, got the kids off to school, went to work, did my job, and I came home. I put one foot in front of the other. No matter what I faced the last two weeks, no matter the precipice I stood upon, I did what I could do to live my life.
On Friday (Sept 16), one year after a surgery placing my port, I walked into Texas Oncology at Baylor Dallas, took an elevator to the 4th floor, waited and had my blood drawn, and then, holding hands with A, we walked into Dr. O’s waiting room for a brief wait. I was called back, A came with me, and I did all the pre-seeing Dr. O stuff -weight, blood pressure, temperature. I’ve gained back some of the weight I lost, but over the course of this year, I’ve lost close to 30 lbs, and I continue to work to lose weight. If I lose another 20 lbs, maybe another 30 lbs, I’d be ecstatic. My blood pressure was very good. Very, very normal. Same for my temperature. I always run a little cool, but it was well within the normal range. The appointment started well.
While A and I waited for Dr. O, we talked about our questions for her. Then, she came in the room. Dr. O is a force of nature. She’s tiny, maybe 5’1, but she exudes confidence, positivity, and ease. She reviewed all my scans and tests and my latest blood work. She’s still not happy with my blood counts and put me back on iron. I told her I needed 2 units of blood after my surgery. She made a note then motioned for me to hop up on the table so she could do her physical, clinical exam. She made A and I laugh very, very hard when she opened the robe her assistant gives us to wear. Her comment was, “Ooooh, these are nice. Very nice. Who did your work?” I’m pretty sure my face turned purple from embarrassment. I told her Dr. L had done it with assistance from Dr. P. She was very pleased with those two names and told me my reconstruction had been done by two of the best in Dallas. We talked about the recent complication…the incision hole and why Dr. L wants to leave it open for it to heal from the inside out. She agreed with him. Then, she went back to the computer to make a few orders and startled us because she exclaimed, “Wait a minute! WAIT just a minute here!” Considering we hadn’t moved, neither A nor myself had a clue. Even her nurse looked confused. “Today is the 16th!” she said. Again, confusion from all parties. Her nurse cleared her throat, and Dr. O turned back to us and told us she hadn’t realized my appointment was also my last Herceptin appointment.
“Well, we do need to talk about things, don’t we?”
Sometimes, I can’t help but laugh at Dr. O. I really feel like her brain goes 100 miles a minute and she’s ten steps ahead of everyone in the room. This appointment was one of those appointments. You just kind of buckle in and hold on as she goes.
“So, you’ll go downstairs and get a chest X-ray. It’s been a year, and we need a new one. It shows me things the blood work can’t show, but I don’t want you to worry about it. I know you, though, so you’re going to worry. I’ll get the X-ray on Monday. If you haven’t heard from us by Tuesday, the X-ray was clear, which means, we can say, you are NED, no evidence of disease, which I believe you are and have been since February. Now, if the X-ray comes back with a surprise, which I again, I don’t think that’s going to happen, we’ll get you back in here with a game plan. I’m going to tell you not to worry about it. Think of this X-ray like your yearly pap or physical. It’s just something we do, not because we thing we’ll find something, but because it’s what we do. So, don’t worry about it.
“I know your question. It’s going to be some version of ‘Now what do I do?’and here’s the answer: you come see me every 20 weeks instead of every nine. I watch you like a hawk. We scan only if somethings bugging you for six weeks or more or if something so acute happens, like that headache you had back in March. I don’t expect that to happen, though. Still, you like to know all the what ifs, and I know it makes you comfortable if you know the what ifs, so that’s the what ifs. You’re going to stay on tamoxifen. I’m going to give you the name of an obgyn I work with. You’re going to call him and tell his receptionist you’re one of my girls and you need a hysterectomy. You go meet him, decide if you like him. Sometime in the next six to eight months, when you’re healed up from this DIEP, you’ll get a hysterectomy and we’ll start talking about switching you to arimidex.
“After today, your life goes back to its new normal. You go on. That’s all anyone can do. You go on. You survived this year. You’re going to survive more years. You go on, you come see me every 20 weeks, and we’ll see what we see.”
Then, Dr. O gave me a huge, bone crushing hug, gave A a hug, and that was it. Her nurse gave me an order for an X-ray, told me to go check in for my infusion treatment then go get the X-ray to cut down on wait time at infusion. She also told me Dr. O would send an order to Dr. H to order port removal, and that would be that. She left the room, and it was just me and A.
I cried. He tried not to cry. I pulled on my R2D2 shirt. He grabbed the bag I take to treatment. We took deep breaths and left. I went to make my follow up appointment for February. He went to the second floor cafe for food. I made my way down to infusion, checked in, left my stuff there, and went to radiology. I had the X-ray done, and then I went back to infusion.
I’m semi-clear. If my cell phone rings and says Texas Oncology between now and Tuesday, I’ll know imaging did not go well. There’s nothing I can do, though, so I’ve actually done as Dr. O said-I haven’t worried about it. That’s huge for me.
Right now, I stand on a precipice, holding onto a slim, sliver of hope. I wait. But, I’m not going to let the wait rule me. No panic attacks over the wait. No worrying about the wait. I have enough to think about, and I’m not going to worry about something Dr. O isn’t worried about, either. I’m going to go on, hope my phone doesn’t ring, and that’s it. That’s all I can do.
I saw Dr. L this morning. Over the weekend, the swelling went way, way down. I did nothing but sleep on Saturday. My in laws put me in my sister in law’s bedroom, gave me the TV remote, and let me be. I slept for hours.
On Sunday, I stayed in bed until late afternoon. We had a family birthday party for S planned. I went to the birthday party and sat.
Today, I slept almost all day after my appointment with Dr. L. The swelling is pretty much gone. No in-office draining attempt needed. He sat with me and told me he gets my fear, he really does, but the problems I’m having right now are surgery complications. They are annoying. They are frustrating. They are scary. They are manageable. It’s going to take months for the hole to heal, but, the good news is, the fluid from the swelling had a place to go, and it took that path. It just isn’t fun for me or my scumbag brain. He sent me home with orders to rest, to take it easy, to stop pushing myself so hard.
I took the entire day off today. I slept once I got home from Dr. L’s office. I just slept. I woke up right before S and AJ came home from school. Once they were home, they played on their own, for the most part. S made dinner for them both, telling me to stay in bed. She had it handled.
I’m not ready for her to be mature like that, but she is. And, intuitive. She knows it’s been a tough weekend.
We aren’t done with the dips on the track. Maybe we’re coming out of a dip now, though. Maybe we’re going to get a calm. That would be nice.
Today’s break was a good one, a much-needed one. Tomorrow, I’ll move a little slower, be tired faster, need to sit down more, and that’s ok. It has to be ok because I can’t be me if I can’t let myself heal, and for once, I’m going to follow my doctor’s advice: Slow down. Take it easy. Rest when you can. Stop pushing yourself.
I came home from work yesterday and changed clothes. I took off the elastic binder I was told to wear after surgery. The swelling on my left side was worse. That was one discovery I didn’t want at 6:00 pm on a Friday evening. Then, I saw, with no small amount of horror, a hole on my incision scar line. A deep hole opened on my scar line. Fluid seeped out of it. Fluid bubbles from it. I called my plastic surgeon’s emergency line while hysterical tears ran down my face. I left a message. A call back came a few minutes later. I explained what was happening and was instructed to text pictures showing the swelling, the hole, and the entire incision line…all 28 inches of it. I was told to go into a shower and press on my abdomen with my back to the shower stream and see if I could force fluid from the swelling. I was told to expect a call back in an hour or so after he had a chance to look at the pictures and determine if he thought I needed antibiotics and what the next steps would be. So, I did what I was told. I took pictures and a tried to drain fluid. The only fluid to be forced out came from around the incision line not my abdomen where there is swelling.
While I waited for a call back my scumbag brain had plenty of time to make me believe the swelling is cancer related instead of surgery related.
The surgeon called back an hour later. Nothing is red. No antibiotics. The hole is a concern. I was told to expect it to widen over the weekend. I was told to be at his office at 8 am Monday morning. I was told to call back if the swelling increases or if more of the incision opens. I was told to keep gauze over the hole to soak up draining fluid.
I’m scared the swelling and everything is related to cancer instead of surgery. I’m scared I’m about to start all over just as everything was supposed to be ending. I’m scared I’m going to die. I’m scared.
During the call back, I was told he would try to drain fluid from the swollen area on Monday, but if he couldn’t get fluid to drain, I would need to go for scans to see what’s causing the swelling. I was told that’s extremely rare, but it does happen. That’s where my brain went into overdrive.
I’ve been in the 10-20% of breast cancer cases since I was diagnosed a year ago. When I hear “rare occurrence,” all I could think was “that’s me…that’s what keeps happening to me.” I was reassured during the call back that all of this is very likely related to the surgery. I was reminded of the massive scope of my surgery. I was reminded how much they did. I heard them. I really did. But my fear is much, much bigger than those words.
I’ve had enough. I’m miserable right now. I’m scared right now. I’m terrified. I wish none of this had ever happened to me. I’ve had enough.
Everyday, I put on a mask, a facade. Everyday, I pretend to be okay. That’s my answer. “How are you doing?” Me: “I’m fine.” A friend at work today, after receiving that response, looked at me and said, “Uh-huh. Try again.” We spent almost our entire lunch talking.
What we talked about was last night. I had one of the worst panic attacks I’ve ever, in three years of having the occasional panic attack, had. It had been building all day. I didn’t feel good yesterday. I was tired…so very tired. The left side of my abdomen is suddenly slightly swollen. Still, I pretended I was fine. It was S’s birthday. I had to be fine. So, I put on the mask, the facade.
It cracked at 9:30 last night.
I walked out of our bathroom, sat down on the bed, and broke. I just broke. I couldn’t breathe. I couldn’t talk. I couldn’t stop sobbing. I couldn’t stop shivering. I couldn’t tell A what was wrong. I couldn’t do anything but sob and shiver and gasp. A sat and rubbed my neck for awhile. Then, he asked the most dangerous of questions: “What happened? What triggered this one?” Do you know how hard, how humiliating, it is to answer, “Me. I sparked it.” It all spilled out after that.
“What if my abdomen is swollen because the cancer has spread? What if the pain I have that shoots from the middle of my abdomen to my back is because the cancer has spread? What if the cancer is still lurking? What if it’s silently killing me? What are they going to do to help me know the signs to look out for in case the cancer spreads? What’s next for me when Herceptin ends? I’m so tired…I’m exhausted. I can’t keep doing everything I’m doing, but I don’t want to ask for help because I’m tired of being weak. I’m so, so tired, though.”
There was more, but those thoughts, circling in my head as I took a bubble bath and read a book, triggered it.
A, ever logical, told me:
“Your abdomen is a little swollen…you just had major, massive surgery where they cut you from side to side and pieced you back together. I’d be shocked if you didn’t have some swelling. It’s from the surgery. If it gets worse, we’ll call Dr. L or Dr. O before you see them next week.
“The pain that shoots around you is muscular. There’s no other explanation. There’s nothing, NOTHING, anatomically speaking, where you describe the pain except muscular. I’m going to guess it’s because you are doing too much, too soon. But, if it gets worse, we’ll call Dr. L or Dr. O before you see them next week.
“The cancer may be lurking. I can’t tell you that it’s not, but I can tell you that you have done everything you can do to ensure it’s not lurking. You’ve done chemo. You’ve done targeted therapies. You’ve done surgery. You’ve done radiation. You’re doing hormone therapy. There’s nothing more you can do except trust Dr. O and Dr. H.
“I don’t know what happens after Herceptin ends. We live our lives without you having to go to Dallas every three weeks. A year of Herceptin is the medical standard if your heart can take it, and your heart has held up just fine.
“I know you’re tired. I know you’re exhausted. You’re doing way too much way too soon. I know it’s because you don’t want to be Cancer Girl anymore. I know it’s because you want to be normal again, but here’s the thing: You’re not going to be normal again. This has changed your life, our lives, and there’s no going back. You have to take care of yourself. You have to listen to your body. You texted me earlier today and said you had a headache building. It’s from exhaustion. You’re not sleeping enough. You push and push and push. You’re going to push yourself too far if you don’t stop.
“You’re not weak. Who in their right mind would tell you that you, after everything you’ve been through over the last year, are weak? If someone says that, I want to know what their definition of strength is. You are not weak. But, you are not taking care of yourself. If you’re doing anything wrong, it’s that.”
A can deliver a walloping when he needs to do so, and last night, I needed it.
I’m not 100% better today. I’m not even sure I’m 50% better today. I went to sleep with a fever and still shivering. I woke up without the fever and the chills gone by 7:00 am. Maybe admitting to having this kind of struggle makes me seem weak, but I also think it’s normal. Maybe I’m processing the last year. I don’t know, but I do know this – I don’t want to crack again. Not like I did last night. So, I’m going to have to take a very hard look in the mirror. A is right. I’m pushing myself too much. I want to be normal, but this? It isn’t normal. I’m not healed from this surgery. I need to take better care of myself. I need to admit when I’m not taking care of myself and do something about, whether it be asking for help, or just admitting I’m having a bad day.
I am scared. I am scared of Herceptin ending. I’m scared the cancer is lurking. I’m scared it’s going to kill me. I’m just scared.
We put our house on the market 2 months ago. It sold in 48 hours. It was crazy. If all goes well, we will close on our current home next week. Our new home won’t be ready until November. It’s going to be an interesting two months.
Today is S’s birthday. She’s 11 today. During quiet moments today, I’ve wondered how many more of her birthdays I’ll live to see.
I took a few minutes of my conference period today to sit outside in a beautiful shaded area created by some of our students. A nice breeze blew, keeping it from feeling like an end-of-summer day in Texas. I stretched out on the bench and stared up at the branches of a large shade tree. I watched the branches move with the wind. I listened to the rustle of leaves, the chirps of birds, the bangs of construction, the chattering of students. It was peaceful. I’ve found one of the best things I can do for myself at work is to take my lunch outside if I can. I sit in the shade, eat, and enjoy the solitude. It gives me time to recharge, which I need.
I’m tired. It hasn’t even been two months since my surgery. 6-8 week recovery time. I was back at work after barely 3 weeks. Yes, it was my choice, and I don’t regret trying to live my life as though nothing is wrong with me (because maybe it’s not…I had cancer. I don’t know if I still have cancer.). What gets to me is I still get tired quicker than I want. I can sleep on my stomach, which helps, but I need more rest. Today, I’m running on fumes. I still have an area where the incision hasn’t healed. It’s smaller than it was, but it’s still there. It’s a small annoyance, but it’s an annoyance.
Next week is a really important week. I have a work event on Monday. We close on our current house on Wednesday. Medically speaking, I see my plastic surgeon on Wednesday. I see Dr. O on Friday. I have what I hope and pray is my last Herceptin treatment on Friday. Then…I don’t know. I don’t know what’s next. How long do I freak out over every new ache or pain? How long do I worry I’m dying, the cancer is hiding and killing me? How long? Forever?
I overheard a couple in Target today. He told his wife he was getting up there in age and didn’t feel like he had a lot of time left. She laughed and told him he wasn’t that old and to stop.
I get how he feels. I’m not getting up there in age, but I do feel like I don’t have a lot of time left. How long do I let myself feel that way? After all, I’m the one who allows myself to feel this way. Stop doing this to yourself, people tell me. It’s not that easy. I wish it was. The thing is, until you’ve walked in these shoes, it’s hard to fathom it’s not as easy as it sounds.
Maybe with some rest will come some perspective. Maybe this year of treatments every three weeks is really going to end. Maybe I can say I had cancer and actually believe it.
A friend sent me a screenshot of a book she’s reading, and the line said something like “we have cancer…cancer doesn’t have us.” I feel like it has me, though. That’s something I have to work through, and something only I can do.