I’d rather have a root canal than schedule my next surgery, but since the thought of going to the dentist is enough to reduce me to a pitiful mass of crying goo, I put on my adult hat and called today to schedule my next surgery…I chose a date during Spring Break. Why?
First, I can’t afford any days off without pay, and I’m dangerously close to being out of days again because cancer sucks…because the flu sucks…because I have kids and sometimes, they get sick, too. At the beginning of last school year, I had 24 days saved up, but cancer happened, I needed a bilateral mastectomy, and there went all my days and some I didn’t have. Thankfully, I have short term disability, and it made up for the days that were docked. This year, like all employees of my district, I received seven days of paid leave. Some people, like my mom, have so many days saved up, it’s mind boggling. Others, like me, manage to save up some and then have to use them all and start saving all over. My goal was to start out the 2017-2018 school year with 10 days (three from this year and seven for next). Thanks to the freaking flu, if neither myself nor my kids get sick for the rest of the year, I’ll start out next year with nine.
Second, since I have no freaking idea what’s going to happen to my health protections, I know I need to have this surgery done ASAP. As the Washington Post detailed in its recent article “Cancer patients, survivors fear GOP efforts to dismantle the Affordable Care Act,” I can’t afford to wait because the longer I wait, the scarier it could get. If lifetime and annual limits return, I’m dead. If the rules prohibiting insurers from dropping someone because they get sick and need to use their health insurance, which is why health insurance exists, contrary to those who think it exists to make them rich, I’m dead. If the pre-existing condition protection goes away, I’m dead. If my cancer returns, and the choice is bankrupting my family or dying, I’d like to live, but I’m not going to bankrupt my family. So. I’ll choose them over me every single time. That’s my reality. My husband is a good man who does not deserve to see everything we’ve worked so hard for together be destroyed because of cancer. My children don’t deserve to lose their stability because of cancer. I know beyond a shadow of a doubt if I were to die tomorrow, A would move heaven and Earth to protect, shelter, and comfort S and AJ. While they also deserve their mother, if cancer returns, if the Republicans get their way now that they’ve caught the car, if I lose my protections from predatory insurance practices, if I lose my protection from annual and lifetime limits, I choose my husband and children over me.
So, in two weeks, I’ll have my ovaries removed. What’s a couple of more body parts? Dr. O told me this surgery could be my last required one since chemo and Lupron surpresses ovarian function. Well, it’s been a year since the mastectomy. It’s been six months since the DIEP. In the timeline of breast cancer crap, with an ER+ cancer, it’s time for the ovaries to join my breasts as medical waste.
I’m still here. I would just make an excuse and say I’ve been busy, but truthfully, we’ve hit another series of cancerversaries that are hard, so I’ve kind of avoided my blog, which is crazy since writing is what helped me so much this time last year. So, let’s start with January 30, 2017.
I saw Dr. O for my first 20 week check up since finishing Herceptin in September. A went with me. Waiting for her was eerie. It was a long wait, just like it was last year when I saw her for the first time after my mastectomy (and that’s the appointment where we found out I had ER+ cancer, which was one year ago…TODAY). Thankfully, this appointment was not like that one. She came in and was VERY pleased with my blood work and exam. She noted the two huge areas of fat necrosis but felt nothing alarming. My blood work, for the first time since October 2015, was normal. My liver numbers that caused so much concern during treatment finally, finally are totally normal, and my red blood cells, my hemoglobin, and my hemocrit numbers were all finally normal. No more iron. Yay!
A asked her what my long term prognosis is, for real, knowing the cancer had spread to my lymph nodes. Dr. O said she’s cautiously optimistic. I’ll take that. I asked her if she’s still recommending an oophorectomy…she is.
I’m so ambivalent about it. I’m on Lupron. I don’t want to have ANOTHER surgery (I’m whining…I know). She did say if I want to delay it until Spring Break or even summer break, that’s not a deal breaker to her. The little voice inside my scumbag brain, though, whispers to me that if I delay it and the cancer returns, it’ll be my fault for delaying the oophorectomy. I’m going to call my new OBGYN on Monday and set it up. Besides, since who knows what’s going to happen with my protections under the ACA, I may as well do it before it’s decided since I got cancer, I don’t deserve health insurance.
So, my 20 weeks check up went well. That’s a relief. I don’t see Dr. O again until June for my next 20 week check up. Hopefully, we continue 20 weeks check ups for a looooonnnngggggg time. She said she wouldn’t release me to 6 or 9 month check ups until I’ve been no evidence of disease for 3 years. I hope I make it to that mark.
A week after seeing Dr. O, and after having a flu shot in early January, I got slapped with the worst case of the flu I’ve ever had. By the time I got to my GP, less than 2 days after I spiked a fever, not only did I have the flu, but my right lung showed signs of pneumonia on X-ray. My first question was “Are you sure it’s pneumonia and not a lung met?” My GP looked at me with pity and just said, “Yeah. I’m sure. It’s not your cancer. It’s your flu.” So, home I went with three prescriptions and orders to call if I worsened. Thankfully, the medicine did its job and knocked it out, but it’s taken me until really this weekend to truly feel better. I’m not coughing anymore. I hope I never have the flu that badly ever again.
Work has been a mix of amazing and awful since second semester started. My school has had 2 staff members die, one on campus just this last week, and 2 take medical retirement since this semester started. It’s been a rough month and a half.
I feel like that should be my tag line…”It’s been a rough month and a half.” It works for all occasions!
My birthday is this week on Wednesday. I’ll be 39. Last year, I wondered if I’d be alive, and healthy, when 39 rolled around, so a huge part of me is so grateful I’m still here, I can’t put it into words. I’ve had another year with A, S, and AJ, and the rest of our family.
That’s the icing on the cake and the best gift I can get.
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.
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.
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.
I have a reoccurring dream involving a stairwell. It looks like the kind of stairwell you might see in a large building. It’s gray and cold and metal and harshly lit with florescent lights. Some nights, I dream I’m running up the stairs. I exit a door, and there’s always somewhere there I know. Sometimes we talk, sometimes we don’t. Some nights, I dream I’m running down the stairs. I don’t know where they end. I’ve never reached the bottom in my dreams. The nights when I dream I’m going up and down the stairs are the nights when I don’t sleep well; I wake up out of sorts, confused, tired, and a little discombobulated. On those nights, when I have to go down the stairs, they’re a little different every time. Sometimes the stairs are taller, bigger, higher. Sometimes I have to climb the stairs. Literally, I have to climb them as though I’m climbing a tree. Sometimes the stairs are narrow, and I have to pay close attention as I walk or I’ll trip and fall, which I’ve done in my dream. When I go up them, there’s always someone there who gives me something to do, and it always involves going back down the stairwell.
It’s such a strange, strange dream.
I have no idea what it means, and I don’t know that I really care. It’s just strange, and it keeps happening. It’s a vivid dream. It sticks out to me because of its strangeness. Apparently, dreaming about stairs relates to the idea of moving forward or backwards in your life. Maybe that’s why I keep dreaming about them…one step forward, two steps back. That’s how it feels sometimes. But, why am I trapped in a stairwell? That’s what I don’t understand. What’s the cold, gray, metal room? Cancer? Hospital?
Annnnnddddd another part of incision has reopened. It’s leaking. It’s all on my cursed left side. Breast cancer. Left side. Extensive radiation. Left side. Surgeries galore. Left side. Complications from DIEP reconstruction. Left side.
My scar is fairly unnoticeable now from the middle of my stomach across to my right hipbone now. I can’t say the same for the left. Start in the middle and go to my left hipbone. It’s a mess. A hole. A healing split. A new opening…could be a split, could be a hole…who knows what it’ll be when it grows up! The scar line is still slightly swollen. So. Back into the abdominal binder I go, again. Every single time I’ve been told I can reduce from wearing it 23/7 to 8/7, complications begin.
I’m 5000% over complications and slow healing. My skin is reacting to all adhesives again…even bandaids cause my skin to turn red, angry, and blister around the edge of the bandaid. Tegaderm, a fairly gentle adhesive bandage, has caused giant, sore blisters about 2 inches under my port surgery removal site. They’re in a perfect, bumpy, red line.
Dr. L warned me DIEP reconstruction can have a high complication rate, and he warned me healing could take much longer than expected. I should’ve listened better.
I went back to work 15 days after DIEP because I had no more sick days to use and couldn’t really afford to be docked. Yes, I felt as though I could handle it, and yes, I wanted to go back to work. But, I also didn’t want to be docked. That’s the truth. I get 7 days a year. I can carry them over from year to year, but when you’ve had to take off a few days here because your grandfather died and another few days because your grandmother died and a week because you got married and a week because your new husband’s grandmother died and two months because your daughter was born during the school year and random days here and there for illness and family emergencies, the days don’t last. Add cancer to the mix?
I felt like I was ready and could handle going back, but I know now I had no business jumping back into life. I pushed myself too fast, too hard, too much. So, I guess much of this situation is of my own making.
Maybe if I’d taken better care of myself two months ago, I’d’ve healed better by now. Maybe these complications would’ve happened no matter what. Maybe I’ll completely heal one day…mind, body, spirit, soul. Or, maybe, maybe I’m setting my expectations too high.
Some of my family members and longtime friends would likely describe me as contrary.
They’re not wrong.
Growing up, I wanted to please everyone and be loved by everyone. I often felt overshadowed by my older sister. She had a lot of issues as a teenager, and her problems took our parents’ time. Part of me was glad she took so much time and energy because that was time I could spend on my own reading a book, writing stories, riding my bike, hanging out at my best friend’s house, daydreaming. Part of me resented she took so much time and energy, though, and it festered, bubbled through my teenage years.
When I was a teenager, I wasn’t a disaster, but I needed help…guidance, and I found it at my family’s church. I found people who realized how angry I was under the surface. I guess I began perfecting those masks and facades decades ago. They, though, refused, absolutely refused, to allow me to believe the worst about myself or the worst in myself. They refused to let me fall because I had people predicting, to me, I would be like my sister, and it made me so, so angry. They were some of the first people in my life to teach me how to block someone or something negative, and it was a lesson I needed.
I remember being seven years old and watching my mom cry about something my sister had done. I promised myself, with all childhood innocence and intensity, I would do everything possible to make sure my mom never cried like that because of me. I worked hard in school, I had a small, but close, group of friends, and I had a job. I wasn’t like my sister, yet for some, I was guilty by association. It infuriated me. And, I took to being the quiet one. The observer. The wallflower. It was easier on my soul to seek solitude, to watch from the back, to loathe the spotlight. Yet, I’m a people person, and my soul craved friends, which I had, but a lot of times, my contradictory need for solitude and my need for exuberance frustrated them
I’m a contrary soul.
Flash forward 20 years. I was 18 then. I’m 38 now. As I’ve dealt with this past year, I’ve found my need for solitude is as strong as it was when I was a kid. I need time to be quiet, to think, to read, to write, to daydream, to settle. Yet, I need my friends, I need to be around others, I need to help, to give of myself, to be a support to those who’ve supported me.
Tonight, it hit me, strongly, how very tired I am. I’m weary. I’m not anxious. I’m not sad. I’m not on the verge of a panic attack. I’m just weary. My soul craves solitude. I need time to reflect, to think, to plan. I need to sleep well. I need to go more than 8 weeks without a treatment, procedure, or an appointment. It’s mindbloggling to me, the timeline of this last year. I had a one month break between finishing chemo and my mastectomy, a three week break after the mastectomy to starting radiation, a three month break after radiation ended to my reconstruction, and an eight week break before my most recent procedure-removing my port.
September 2015-January 2016: Chemo, Perjeta, Herceptin every single three weeks. 6 hour infusions. Intense treatment.
February 2016: Bilateral mastectomy with auxiliary node dissection while continuing Herceptin.
February 2016 through April 2016: Radiation while continuing Herceptin. Intense radiation. Echocardiogram for heart function. CT scans daily
May 2016: Herceptin. No procedures.
June 2016: Herceptin. No procedures. Echocardiogram for heart function
July 2016: DIEP reconstruction while continuing Herceptin.
August 2016: Went back to work 15 days post DIEP while continuing Herceptin.
September 2016: DIEP abdominal complications. Last Herceptin.
October 2016: Port removal procedure
So, I’m weary. I’m just tired. I can’t be everything to everyone no matter how much I want to be because my soul needs me to recognize I have limits.
I can’t argue with friends who refuse to listen to logic because my soul needs me to understand it’s not my job to please every one. It’s my job to take care of me.
My soul and I agree on one thing: I’m doing better at taking care of me. I find time to meditate. I find time to read. I find time to be alone. My soul needs me to honor my needs. I can’t be me if part of me is just this weary.
I can’t fix all the problems. I can’t be mad when I have FOMO (fear of missing out) happening. I can’t allow myself to do always for others and nothing for myself because I hate being the contrary soul.
My soul, though, needs me to embrace its contrariness, to remember it’s ok to need people and solitude, to belong yet not belong. It’s ok to be me. I was this way before cancer. I’m this way after cancer. I’m meant to be this way. What my soul needs is for me to remember that, to honor that, and most of all, to accept that because if I can’t or won’t remember, honor, and accept myself, who will?
Dr. H removed my port on Friday. People asked me if I was excited or ready to get back to normal. Dr. H asked me if I was tired.
Yup. I’m tired. Cancer made me tired.
What removing my port or finishing Herceptin or having reconstruction has not done is return me to normal. What does that even mean? Normal? No, I’m not ready to get back to normal.
Before cancer, normal meant worrying, all the time, about everything. Cancer made me get that under control because I cannot handle that kind of stress anymore.
Before cancer, normal meant being chronically sleep deprived. Cancer made me admit to my doctor I suffer from insomnia and allow myself to get some help so I can sleep better.
Before cancer, normal meant trying to please everyone all the time and putting myself last. Cancer made me stop trying to please everyone and to put myself first sometimes.
Before cancer, normal meant not taking care of myself. Cancer made me lose weight, learn how to meditate, and find ways to relax.
Before cancer, normal meant being okay with not being okay. Cancer made me come face-to-face with my struggles and find ways to solve them or work on them.
Before cancer, normal meant not speaking my mind because someone might get mad at me. Cancer made me not care if someone doesn’t like my opinion…or me.
I don’t want to go back to normal. I’m a better mother, wife, daughter, friend, teacher because I’m not who I was a year ago. Cancer made me realize how not okay my normal was. Why would I want to go back to that?
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.