breast cancer, life, Uncategorized

Today is not a good day

thursday_some
Found via someecards. No infringement intended

When I get overly tired, I have a hard time keeping a lid on my emotions.

I’m overly tired today.

I haven’t slept well in awhile. It’s my ankles and feet. They just ache. I’m coping with it, but it’s starting to take its toll. I toss and turn and stretch my legs for at least an hour after I go to bed. I have a bedtime ritual I’ve followed for as long as I can remember. I go to bed. I turn on some music. I read for an hour. I go to sleep. Now, it’s I go to bed. I turn on Pandora to the filmscore channel I created. I read for an hour, surf Twitter for an hour, or Pin for an hour. I turn everything off. I toss. I turn. I stretch my feet. I stretch my legs. I toss. I turn. Eventually, I fall asleep. Then, I do it all over again the next night. Nothing, so far, seems to really help for long.

It’s a side effect. As long as I’m alive, I suppose I’ll struggle with it. I cope with it as best I can, but today…I’m overly tired. I’m emotional. My ankles hurt right now, a deep ache.

I see Dr. O again in a little over a week. It’s my first time seeing her since I finished Herceptin treatment. It’s my 20 week check up. I’m not looking forward to it. I’m scared…worried, really. I’ve done so much over the last month I’m not supposed to do. I’ve gained some weight. I’ve eaten a ton of sugary things. I’ve drank a lot more soda. I feel like I’m doing everything wrong, and so, if there’s something abnormal at my appointment, it’s my fault. I’m stressed. I’m not sleeping well. I’m not eating well. I’m not drinking well.

If the cancer comes back, it’s my fault. That’s my truth today, and it hurts. It should hurt. I know better. Yet, here I am.

When I was in my teens and twenties, I was always waiting for the other shoe to drop. Now, I’m waiting for the cancer to return. It’s a horrible way to feel, to feel it’s your fault you developed cancer in the first place, and to know if it comes back, it might be your fault.

This is where I am today.

breast cancer, life, Uncategorized

Subtypes and Subtext

I had a three month check up with Dr. H yesterday. Considering it hasn’t been all that long since I saw her, there really wasn’t much to check up. The lumps in both foobs feel the same. The radiologist told Dr. H he is confident they are, as he told me, oil cysts and fat necrosis. She wants to see me again in three months. By then, I will have (finally) seen Dr. L for my follow up and will know what his recommendations are regarding the lumps and what surgeries he recommends, if any.

The only new thing that came up yesterday is I asked Dr. H to go over the final pathology report with me again because neither she nor Dr. O had gone over the report’s addendums in depth with me. Dr. H got most of the addendums after she had called me with the initial report. Dr. O had gone over with me the addendum that revealed the cancer left behind was ER positive. There were two other addendums, though. I wanted, needed, someone to explain to me what everything meant. So, Dr. H sat with me and walked me back through that last pathology report.

Most everything was what I already knew. What I didn’t know was that the pathologist reported there was a definite response to chemo based off the tissue, which I knew since the HER2 cancer was gone, and the addendums confirmed there was absolutely no HER2 cancer found in what cancer remained. The cancer that remained was a slow growing ER+ that typically does not respond well to chemo but responds really well to drugs like tamoxifen….and AR+ cancer.

AR+ isn’t really it’s own subtype. There’s some interesting research being done on it, particularly with triple negative breast cancers that are found to be AR+, but AR+ is just a side note for me because, for me, being AR+ changes nothing. I was HER2 positive. I am ER+. Dr. H said this is nothing to worry about and is actually a good thing. For my subtypes of cancer, treatments exist that are effective, and I’ve had them all, or are on them now. I absolutely believe her.

I see Dr. O in a couple of weeks for my 20 week check up, and I plan to ask her to explain the AR+ in more depth, but ultimately, it changes nothing. I’ll still be on tamoxifen for another year. I still need an oophorectomy. I’ll switch to armidex after that, and God willing, I’ll be on armidex for ten years (provided I don’t lose my health insurance because of the new Congress and their zeal to yank health protections away from us, but that’s another post…).

Somehow, Dr. H gave me some peace of mind yesterday. I’m not sure what, why, or how, but she did. Now, if we could only figure out how to help my ankle, foot, and heel aches, and if we could figure out how to help me sleep.

Uncategorized

Aches In My Joints

I’m not on arimidex, yet. If I stay NED until February 2018, I’ll switch from tamoxifen to arimidex. I know one of the side affects can be painful joints. One of the chemos I was on had joint pain as a side effect. Neulasta had bone pain as a side effect.

My feet, heels, and ankles ache. It’s a long term side effect from my treatments. Standing up from sitting or resting or sleeping can be an exercise in how-can-I-step-without-yelping. Most of the time, I end up grimacing and hobbling.

I’m alive, though, so I’ll take the constant aching and occasional sharp, shooting pain.

Before cancer, I got pedicures once a month or every six weeks. It was just something to do for me every now and then. Now, I get pedicures once every two weeks.  They help with the aches and pain in my feet, heels, and ankles.

It’s also self-care. I’ve begun going to a place that’s impeccably clean and nice. They serve coffee. It’s quiet. It’s relaxing. The last time I was here, the tech commented on how thin my nails are, and when I explained they were recovering, like me, from cancer treatment, she didn’t make me feel awkward. She asked me what kind of cancer and if I’m comfortable talking about it  I told her breast cancer and that I was having a bad day, which was true. She nodded, hit the recline button on the chair, and told me to close my eyes. I did. It was soothing.

It seems silly to spend the money on a pedicure every two weeks, but I have to take care of me, too. It helps my aching feet, ankles, and heels.

It helps me.

breast cancer, family, kids, life, Uncategorized

A day of frustrations

I barely slept last night. I couldn’t get comfortable. Our new kitten decided he needed to sleep on me. It was cold in our room. It was hot in our room. I heard a noise. The cats decided to run through the entire house at top speed.

I scrolled through Twitter and saw all the Tweets of what the new Congress plans on doing to the country. I felt the tension building, again, in my shoulders and in my head.

I went to see my plastic surgeon for the third time in three days, and for the third time in three days, I was forced to reschedule my appointment. Yes, really. I had an appointment for Monday, the 2nd. I had a confirmation call about the appointment. I went to his office on Monday. Office closed for the holidays. So, I started thinking I’d put it in my phone for the wrong day. Stupid me. Yesterday, I went to his office at the same time I’d gone on Monday after arranging for someone to take part of my 2nd period class. I got to the office, and the receptionist told me I didn’t have an appointment scheduled. I told her about Monday. She looked at the schedule, and gee, I was scheduled for an appointment on Monday…when they were closed. Their fault. We’re sorry. She rescheduled it for today at the same time. So, I arranged for someone to watch my 2nd period again and went. I sat in an exam room, in a gown, for 45 minutes. I listened to my doctor go into all the rooms around me. My appointment was at 10:05. At 10:55, I dressed and walked out of the exam room in tears. His medical assistant looked startled. I told her I couldn’t wait anymore because I had committed to covering part of another teacher’s class starting at 11:15. She told me she could have him in to see me in five minutes. Five minutes is not enough time for me to discuss what to do about the fat necrosis that still freaks me out. Five minutes is not enough time for me to discuss what to do about the fact the right foob is a full cup size bigger than the left. Five minutes is not enough time with my doctor. Five minutes is all I would have before I truly had to leave if he actually made it in my room within five minutes. She apologized and sent me to be rescheduled.

are_you_kidding_me_rage_face_meme_

I was so angry, I was in tears. The scheduler rescheduled me. Again. For the third time in three days. The new appointment is two weeks out.

I’m an angry crier. I cried as soon as I got into my car. I yelled at the Staples delivery driver who had almost blocked my car in when he made an annoyed face as I tried to back my car out of the space. I called A and cried. I got back into my empty classroom and told a coworker what had happened. She told me to text her the next time something like that happens and she would figure out how to help me. She told me my health and my family matter more, no matter how much I love my school. After she left, I put my head down on my desk for the two minutes I had between talking to her and covering the other class. I spent two minutes with my eyes closed trying to calm myself. Then, I went and covered. I won’t say no to covering someone, not after all the covering that was done for me last year so I could go to a doctor’s appointment or go to chemo or go do a burn treatment thanks to radiation. My principal covered my duty for me at times last year so I could go in the clinic and do a burn treatment, so no, I’m not going to say no to someone who needs help here at work if I can help. Sometimes, I believe strongly in the idea of paying it forward. Covering classes is how I pay forward what people did for me last year.

After I covered the part of her class she needed me to cover, I went out to my car. It’s cold here in Dallas. Arctic front and a chance of snow. Yaaaaaassssss. I love the cold, and I love watching my children experience snow. I hope it actually snows. My luck, though, it won’t simply because I want it to snow (“That’s not how weather works, L!” you might say, but it seems like that’s how my luck works). I wanted to be out in the cold, to enjoy it, to just be for a few minutes. And, stupidly, I got on social media. And, I saw more of the political circus revolving around the ACA. I went to my Rep’s website and found a link called “Your Obamacare Story,” and stupidly thought it was a good thing. Then, I saw how it only wanted negative stories. It was the straw that broke the camel’s back for me, and for the second time in less than I month, I found myself on the phone with an elected official’s office relating to the intern who answered the phone my story.

Not all Obamacare stories are negative, and <Congressional Official> needs to know there are stories like mine where the ACA made sure I had a chance to survive. It’s not perfect. It can be made better, and yes, my insurance premiums have gone up, and my out of pocket expenses have gone up, but you know what? I don’t blame Obamacare. I blame the insurance companies. I blame the drug companies. I blame them because they’re finally required to do their jobs. Let me tell you my story and why I happily pay for my insurance. I’m grateful to still have it.

I’ve worked since I graduated from college in the same job. I’ve paid my own health insurance for seventeen years. I never thought I would need it for anything except if I had kids. I never thought breast cancer would happen to me and certainly, not at 37. Yet, at 37, with no family history and no reason from genetic testing, there I was…with breast cancer. My treatments cost well over one hundred thousand dollars, but I could have them because my insurance company couldn’t drop me, couldn’t enforce annual limits, couldn’t enforce lifetime maximum limits. I’m alive because of my oncologist, who I could see because of my health insurance. I don’t rely on the ACA for coverage. I rely on the ACA for protection. The ASCO publishes a report about cancer care in America, and it talks about how the ACA has helped those of with cancer because of the reasons I listed.

I am a wife. I am a mother. I have two children. I love my husband and my children very much. I want to be able to live as long as I can to maybe see my 11 year old daughter and 8 year old son grow up.

I’m a teacher. I work hard everyday to give back to my community, the community I was raised in, that my parents were raised in, that I raise my children in, because it’s important to me I do something to contribute to my community. My story is not unique, but I’m tired of feeling voiceless, of feeling powerless. You need to know there are people, many people, like me, who without the ACA will find ourselves in danger of losing our HEALTH insurance because we got sick and needed our HEALTH insurance, which is the point of HEALTH insurance. So, please, make sure <Congressional Official> knows there are stories like mine. My story matters. My life matters. My voice matters, and I’m tired of not having a voice.

The intern listened, asked questions, made comments that made me feel like he was actually listening. Then, he asked my name and for my contact information. He told me he would see to it my information and the notes he took were passed along to my representative. Maybe he will. Maybe he won’t. But, I’m not going to stop calling my elected officials. You cannot leave those of us with catastrophic illnesses with no safety net. Well, you can, and the GOP is trying, but the question is one of mortality and community, and if you stand on a conservative platform and claim it’s moral to take away access to healthcare from millions, I have to question your sincerity. That’s why I questioned, and still question, my friends and family who voted for Trump, why they voted against my life. How can you say you love me or care about me knowing the outcome would be what I see on social media every day now? One of my family members told me he really didn’t think this would happen. I had to turn and walk away.

Maybe I’m not going about this in the way I should, but my blog and my phone are the only ways I can get my voice heard. I want my elected officials to know there are many, many people like me. I want my elected officials to know taking away access to healthcare for millions with no true plan to replace the ACA is wrong. I want my elected officials to know I exist. I have a voice.

I don’t want to worry every single day that if today is the day my cancer comes back, today could also be the day my insurance company tells me, “Bye Felecia!” and sends me a letter with some bogus reason the company has come up with to drop me from coverage because cancer. I don’t want to worry every single day that if today is the day my cancer comes back, today could be the day my doctor tells me I can’t have a treatment or a surgery because insurance won’t cover it.

I know people who think my life is expendable because I developed cancer. I know people who think it’s my fault I developed cancer. So, I know why people think it’s okay for the GOP to do what they’re proposing.

Since 2017 began, these have been the prevailing thoughts circling in my mind, that keep me up at night (besides the cats), that scare me to my core.

It’s been a long, frustrating day.

breast cancer, life, Uncategorized

What’s on your mind?

When you post a status, Facebook’s text says, “What’s on your mind?” So, here’s what’s on my mind-I don’t like myself a whole lot right now, and I don’t like a lot of things right now.

I woke up on New Year’s Day and was hit on social media by all the posts of plans for repealing the ACA and Trump’s ridiculous New Year’s Day Tweet. I slept terribly, and sadly, that’s true for me for pretty much my entire winter vacation.

See, here’s my problem-I don’t feel hopeful about 2017, not when politically, the party of life is ripping away healthcare from upwards of 20 million people, when my own health insurance protections are now at risk. I’m powerless, just like I was when I found out I had breast cancer, like I’ll be if the cancer comes back. I’m powerless. I don’t want to be powerless, but I am. I can’t stop any of this political mess. I can’t stop my cancer from coming back if it decides to come back. I. Can’t. I can’t get my voice to matter.

And, in the TMI department, I’m not happy with my reconstruction anymore. Everything has settled into place. One foob (fake boob made from a flap for those who can’t figure out the portmanteau) is a full cup size bigger than the other. It also dropped down more than the other. So, it’s pretty lopsided, and I don’t like it. I know I need to talk to my plastic surgeon about it, and, I will at my appointment tomorrow after two rescheduled appointments with him. I don’t like the fat necrosis that’s visible on the foob that’s larger. I don’t like any of it right now.

I hate this. I hate all of this. I wish I’d come out of this cancer crap a better person, a happier, stronger, more gracious and more content person, but I didn’t. Just one more failing of mine, I guess.

So, what’s on my mind? I’m powerless. I’m insignificant. I hate cancer and what it’s done to me. That’s what’s on my mind.