April 10, 2017

When I didn't have any hair, I remember thinking that I wouldn't ever complain about a "bad hair day" when I had hair again.

I'm taking it back. I hate how my hair looks. I'm supposed to be grateful to even have it, but I hate it. I would shave it off again if I wouldn't have to go through this awful stage again.

When I look in the mirror or at a photo of me now, I see a very specific photo from my past. It was taken at some time when I was in junior high. I had just gotten a new haircut - just like Dorothy Hamill - and seemed pretty proud of my new hair. I'm wearing some sort of a pantsuit that my mother made for me, sitting in a green velvet chair in my parents' living room, looking kind of saucy, like "like my new haircut?" I did, obviously.

The memory that always follows that one, that makes my skin crawl and gives me chills even today, is at the junior high lunch table, with the other Ws through Zs (assigned seating, yay). The Ws through Zs were talking about Sarah and her goofy new haircut "and that duck tail!" either not realizing or not caring that said haircut was sitting at the end of the table, trying to make herself small so no one would notice her. I don't remember if they did notice me. I don't remember feeling like there was any malice in what they were saying; I just remember wishing that I could be anywhere else with my ugly hair.  

There's an awesome postscript to that story, too: The night before one of our class reunions, a bunch of classmates and I found ourselves in one classmate's garage/party room. It was raining out, so we were all crowded at tables and at the bar. We were far enough from high school that even I was having fun, seeing people I remembered and trading stories. It was pretty startling, then, to hear a conversation to one side of me -- it was one of those Ws through Zs and another couple of my elementary/junior high school classmates, talking about my awful Dorothy Hamill haircut "and that duck tail!" 

This time, my old classmate realized what she was saying, and quickly apologized or said something regretful. I don't really remember, because Jesus H., how did I manage to end up a junior high lame weirdo with a bad haircut at my 15th high school class reunion?

Writing this today, a couple months short of my 50th birthday, still makes me squirm. It makes me want to make myself small, not get in anybody's way -- maybe no one will notice me.

Today, I have short, curly hair. It's a sign that I'm done with chemotherapy, that I've beat cancer. I would fucking shave it all off to not feel like that ugly junior high kid. I'm not fooling anybody.

December 18, 2016

I haven't written in a long, long time. Radiation was, for the most part, uneventful. About a week and a half into the treatments, the burns started showing up, and my skin got pretty irritated. Like, weeping sores irritated, which always made me think about the victims of the Hiroshima bombing. I visited Hiroshima and the museum there with my Mori family while I was in Japan, and I remember seeing a photo of a person who had radiation burns - it looked like the person's skin was melting off.
My skin, of course, wasn't that bad, but it did hurt. I've never really stopped being tired, so I wasn't surprised to experience tiredness as one of the side effects.
The treatments themselves were very short - about 10 minutes, from getting into the radiation room to getting out. As the techs told me (over the intercom) to "hold your breath" and "breathe like normal," I tried to think of the radiation going into my body and killing off any rogue cancer cells.
The weird thing about the burns is that they got worse for a few days after treatments stopped. The doctor told me that it would take about 10 days for my skin to really get better, and he was right - yesterday, 10 days after my last treatment, was the first day I didn't wear some sort of a bandage or cover over my skin under my clothes. There's just one semi-weepy spot left, and it itches more than hurts.
I had my chemotherapy port removed today at my (FHN) surgeon's office. So today, I'm officially done with cancer treatment. I've got appointments scheduled with my medical oncologist in 3 months and my radiation oncologist in 6 months, and it seems like that will be the norm for a while - a doctor visit every three months. I can handle that.
As this blog is some weird hybrid of a diary, I feel like I should talk about the other huge development in my life - Mom died Dec. 5. I got a call from Tim just as I was getting home from work; Mom wasn't getting enough oxygen, so they had called the ambulance and taken her in to the hospital. The doctor started asking Tim questions about whether he wanted to sign a DNR and intubation. I was still having daily treatments, so after my treatment that day, I picked up Jen and we went down to Sterling. I wasn't sure that Mom would still be alive when we got there.
She was - wearing a mask that did her breathing (noisily) for her and covered her face. Tim, Mark and Linda were there, and the nurse was telling them all the details you get when you're hospitalized - information about meals, baths, etc.
When he had finished, he sent a doctor in, who went over everything again: Mom was not getting enough oxygen on her own, and would need to be intubated and put on a ventilator. Was that what we wanted? We talked about it - we all knew that Mom wouldn't want to be put on a machine, so we told the doctor to make her as comfortable as possible. He reiterated that he didn't expect her to live through the evening, and we understood.
The doctor prescribed morphine to help ease any anxiety that Mom may have been feeling - she hadn't communicated with us at all, and Tim said that she hadn't been communicative at all that day.
So we were all there - Tim, Mark, Linda, Jen, Jeff and me - when Mom died. I am glad that she got to choose the time, and I feel like she was ready.
The funeral was lovely, and sad, and as I suspect all funerals are, not enough to represent how much I and everyone will miss Mom. Her old friend Carolyn Icenogle came, and told me that her husband Jack has Alzheimer's, too. There were some familiar faces from Good Shepherd - the Brockmans, the Groharings, Arlene. I liked going back to the church for the luncheon - the curtains in the basement are the same, and the shuffleboard courts are still there. I sat in our old pew and looked up at the altar once again. Steve came in and pointed out one dark board in the ceiling above the altar - he laughed and said he looked at that board every Sunday. Mom and Dad were founding members of Good Shepherd - the cornerstone on the old part of the church reads 1965. I remember Mom quilting there with the Women's Society, and so many spaghetti suppers and youth group meetings and Sunday School classes - both as a student and later, as a teacher - in that church.
We'll have to go through the house and figure out what to do with all of the stuff, but that will wait for at least a little while. It's still difficult to grasp that Mom is gone, but if anyone deserves heaven, it is her.
At some point, I remember talking with her about whether our pets would go to heaven. Animals don't have souls, she said, but God knows that we love them and will need them to be with us. So I'm picturing Mom up in heaven with who knows how many animals we've had - Tootsie and Hershey and Spot and Curfew and Meezar and Indy and Anna and so many more.

November 5, 2016

So, Tom is already picking out his tattoo. The Cubs won it all, and we've been busy. Our "lucky" place to watch the World Series turned out to be Benchwarmers here in Freeport, where we dined on crabcake burgers for three games straight. =)
I go in for my radiation treatment every weekday at 1:20. With a week and a half of treatments behind me, I'm glad to report that it's mundane, not terrifying. I go back to the radiation waiting area and change into a gown and robe, and sit in my spot on the couch to wait for a tech to come get me. One tech comes out to let me know to go back to the radiation room, and goes to get a warm blanket to lay over me. I lie down on the model/cast thing that they made of my shoulders, arms and head and the techs position me using lasers aimed at my teeny, tiny tattoos. Then the techs go out of the room, and talk to me via an intercom, telling me when to hold my breath for treatments. The "arms" of the machine move around me and make focusing and beeping noises, then I'm done.
I have to hold my breath during the actual treatment (they break it up into manageable bits of time) to minimize the risk of damage to my lungs and heart. Like probably every other person who's had radiation, I spend most of my time hoping not to sneeze or cough, sending radiation to burn the stuff I actually need.
I am back down to part-time work, which is good, because it seems like the fatigue is catching up to me. Today is Saturday, and Jeff had to go down to his office and work. I had plans to drive to Monroe to get some more Fromm canned food for Tiger, clean out my baking cabinet and organize the cat and dog food, and rake leaves if I was feeling really good (and let's be honest here, I haven't felt really good in a while, so that was probably not happening, anyway). I got up to Monroe, but ended up sleeping the rest of the afternoon.
I don't feel as bad as I did after chemotherapy, but the fatigue is real. I can pretty much sum up my life like ... well, let me just lie down here and take a little nap. (Wakes up 4 hours later.)
One thing that is bothering me is that the neuropathy in my hands and feet seems to be getting worse. I get sharp pains in my right foot that feel like I'm stepping on a live wire - I literally jump when it happens. And my fingers are more numb and dead-feeling than they seemed before. But the oncologist said it would be up to a year before I was feeling better.
The neuropathy is weird. When I first mentioned it, my oncologist asked if I dropped things, and if I could still hold a pen. He even had me write my name to see that my fingers were working. They were working fine; I remember thinking that it would suck to not be able to hold a pen. Well, I can still hold a pen, but it's somehow awkward. Like, if I'm writing a check, by the time I get to my signature, it's all I can do to make a squiggle on the signature line.
I've been trying to keep hydrated - the radiation treatment is dehydrating, and I'm still recovering from chemotherapy, which is also very dehydrating. The skin on and around my left breast should start to look and feel sunburned soon, and I'll need to take special care of it (super-hydrating cream twice a day). I already can't wear deodorant on my left side, and have to use a non-soap cleanser when I shower.
My hands get really rough every winter, and I'm trying to keep that from happening. I noticed last weekend when I did the laundry that the dry skin on my fingers is catching on some materials when I fold clothes. It's weird; I don't actually feel them catch - I hear the staticky sound of rough skin on smooth fabric.
While we were watching the Cubs' first World Series win at Benchwarmers, my hands were feeling really rough, so I put on some of the lily of the valley scented hand cream I carry in a small tube in my purse. I got the tube a couple years ago, so it's almost empty. Well, we'd been there for a while (had a few beers), so I decided I would order some more. I must have been very concerned about hydration - I bought 3 BIG tubes! So I'm smelling like lily of the valley lately, and will be for a long while.

October 20, 2016

So Tom has this "bet" he's dreamed up with me: If the Cubs win the World Series this year, we're both going to go get Cubs tattoos. He reminds me of it a lot, with the Cubs in the playoffs.
When I learned that I would get tattoos as part of the preparation for my radiation treatment, I had a plan to text Tom and tell him after I'd gotten them, just to surprise him. Yeah, my tattoos would be teeny dots, but they'd still count, right?
Jeff and I met my radiation oncologist last Friday, and I had a planning session scheduled for Wednesday. I'd meet the technicians who would be working with me, and they'd do some CT scans so the doctor could plan the course of treatment. And I'd get those tattoos. My appointment was scheduled over the lunch hour, so I could feel cool and brave all afternoon. Another mile marker on the road to being done!
The radiation techs were really nice, and everything went well. They kept a running commentary up about what they were doing and why as they used markers to mark spots on my sternum, ribs and chest that will help them position me correctly for my treatments.
The tech who did the tattoos - a needle stick with a drop of ink - warned me when she was going to do the needle stick, and I think I joked about needles not scaring me anymore.
I don't remember for sure, because when she made the first mark, I freaked out. I couldn't catch my breath, and then I was sitting up on the CT scanner table, gasping and crying and just generally coming unhinged. The other tech came into the room and it took them both to calm me down. I still can't remember everything about it. I don't think I was scared, because really, what was there to be scared of? I was embarrassed and ashamed; I don't think I've ever felt so vulnerable in my life.
(Writing this a day later is still making me uncomfortable.)
Somehow, I got it back together (I should say the techs got me put back together, because I remember feeling absolutely helpless) and the tech was able to finish the tattoos and finish up the appointment. Both of the techs were so kind and told me everything was OK, but man, did I feel pathetic. I got in my car and, instead of driving back to work, went to the park to look at the ducks and geese and try and calm down. At this point, my head hurt and I'm sure my eyes were red and I looked like hell, so I went ahead and cried a little more. (As I drove back to work later, I was thankful for probably the first time that I don't have any eyelashes - I would have been a mascara-d mess.)
I got back to work - thankfully, no one asked me about my appointment - and went home. I never did text Tom about my tattoos.
I thought that writing this down might help me process what happened, but it's really only made me uncomfortable and kind of upset again. I don't know what that outburst was about, and I kind of dread going in for my first treatment next Wednesday. Will the techs be wary of me, ready for a freakout for no reason? Will I feel like I do now - on the verge of tears just remembering what happened?
This weekend is Cornell's homecoming. Jen and I will go out there - she's thinking about going there next year - and I'll meet up with a bunch of my Delphi sisters. We've had a running Messenger thread going for a few days now about crashing a Delt party, getting together for drinks, etc. One of my friends who will be there had cancer 10 years ago. Another Delphi sister (who can't be there this weekend) has Stage IV breast cancer. So we'll be talking about cancer, I'm sure, and how badass we are for beating it. I'm not a badass. Right now, I feel beaten.

2016: The Year My Luck Ran Out

2016: The Year My Luck Ran Out

By Sarah A. Rogers

As part of the FHN marketing team, I write a lot of health-related things. I can tell you the warning signs of a heart attack or stroke; what the difference is between a nurse practitioner, a physician, and a physician assistant; and I’ve been known to lecture my family about antibiotic overuse. 

So I am pretty familiar with Walk-In Wednesdays, FHN’s “open invitation” for women who need a mammogram. When I turned 45, I walked in for a baseline mammogram. 

With no family history of cancer, a mammogram was more of a “cross off my to-do list” event, and after all, I could hardly write about taking care of your health if I wasn’t doing so myself!

So it made me nervous when I got a call to come in for a retest and an ultrasound. I comforted myself with the statistics – the nurse who called me assured me that the vast majority of callbacks on mammograms turned out to be nothing to worry about. 

Online, I found that, according to the American College of Radiology, for every 1,000 women who have a screening mammogram, 100 will be called back for another look, and 61 will find nothing wrong after their follow-up imaging. The odds were in my favor!

I was relieved when the radiologist came in after my ultrasound to inform me that I was fine. My future mammogram appointments, thanks to the spot on my left breast that brought me in for further testing, would include an ultrasound so my healthcare team could keep an eye on that spot.

I felt kind of lucky, actually – no nervous waiting for the “all clear” call for me; I would talk to the radiologist in person after each ultrasound. I was kind of like a mammogram VIP. 

My luck ran out early this year. Another spot had developed, and after a mammogram and ultrasound, the radiologist recommended a biopsy. 

The odds were still in my favor – in fact, as the American Cancer Society informed me online, in bold print, most biopsy results are not cancer. 

I’d like to say that I was in that “most” group, but then, I wouldn’t be writing about having breast cancer, would I? 

The biopsy found triple-negative breast cancer. That’s about all I remember from when my surgeon told me and my husband that I had breast cancer. I remember thinking “I’m going to have to look that up.”

My type of cancer, I would find out, is called triple-negative because it’s ER, PR and HER2 negative, which means it lacks the hormone “receptors” that fuel most breast cancers; estrogen and progesterone receptors and human epidermal growth factor receptor 2.

That’s a lot of medical jargon there, isn’t it? I’m pretty good with medical-ese, and I already felt confused. (Mind you, I was looking up this information on my phone on the way home from our appointment with the surgeon.)

Before long, my medical team expanded to include a medical oncologist, who talked with me about genetic testing – if I had the BRCA mutation, the team’s recommendation for surgery could change from lumpectomy to mastectomy – and the near-certainty that I would undergo chemotherapy. 

Since my diagnosis in March, I’ve undergone surgery that included a lumpectomy and the removal of some lymph nodes to see if the cancer had spread. I’ve gone through eight rounds of chemotherapy, and I have a second surgery to remove (and biopsy) a different spot on my other breast. After that, my team will expand to include a radiation oncologist when I undergo radiation therapy.

I have felt awful, like someone pulled the plug out of my life and everything good had just drained out. I have gotten sick on a family vacation, and had to cancel plans with friends and family. I have “chemo brain,” which makes my memory fuzzy and has robbed me of my concentration and what seems like half of my vocabulary.  My fingers and toes are an odd combination of numb and super-sensitive, and sometimes feel like they’re being attacked with needles.

I have told my family, my friends and coworkers that I have cancer, and they have supported me, offered help, and cheered me on. When my hair started falling out, my husband shaved my head while I sat covered in sheets in our living room because I was afraid our dog wouldn’t recognize me without hair. When I posted a photo of me, bald, on Facebook, one of my friends commented simply “New glasses? Cute!”

Though my luck in health ran out this year, I still feel pretty lucky. My breast cancer was detected early and I put up a good fight, and I believe I’m on my way to being well. 

The earlier cancer is found, the better your odds for recovery. So even if luck isn’t on your side, getting regular screening mammograms can make sure that time is on your side. 

October 1, 2016

So, the biopsy found lobular carcinoma in situ, or LCIS, in my right breast. Sounds bad, but it's actually good news. It's considered basically high-risk for developing into "real" cancer - but it's not something that requires treatment. (Plus, theoretically, they cut all of it out of me.) So I will move on to radiation therapy for just my left side.
The surgery went really well - I felt a little sore, but really can't even claim it was bad enough to be "pain." And people were really surprised to see me back at work on Monday. (I was surprised to see me back at work on Monday, after seeing 3 really good bands - and Tom! - Sunday night in Madison.)
I'm going to have to get the disability/working thing in order, but I'm stalling until after I talk to the radiation oncologist here in Freeport. I have an appointment Oct. 14. I'm still tired out and my brain feels kind of "fried" after everything - it's hard to concentrate on anything for too long.
But before that next appointment, Jeff and I are going to Panama City Beach. It's a birthday present for the both of us. He REALLY needs to get away from work - he has been working ridiculous hours all summer long, and they seem to be only getting longer. So I was glad for an excuse to get him away from there.
Today, in fact, he's down in Sterling, cramming in a bunch of work before we leave tomorrow. I can't complain, though - he's coming home early enough for us to get up to Madison to see the Wombats tonight. We've had a hectic week - the Mowglis on Sunday, Car Seat Headrest on Tuesday, Frank Turner at the Codfish Hollow Barnstormers in Maquoketa, Iowa on Thursday, and then tonight. The show is sold out, and it's a small place - it will feel good to start our vacation jumping up and down with a bunch of college students to a good band.
Before I left for vacation, I got a bunch of stuff posted on FHN's Facebook page about breast cancer awareness - it's pink month. Each year, we do a bunch of stories for The Journal-Standard's pink breast cancer awareness section, and I had a feeling that this year, my boss would ask me to do something first-person. I was against the idea at first - because really, talking about my boobs to the general public?!? But I went ahead and did it, and it's OK. I'm not sure when it will be published, but I think I will include it here on the blog at some point.
My hair is growing back, slowly. I'm still pretty bald. I ordered some fall-ish hats, because the tan one I've been wearing all summer isn't going to look good with sweaters.
All summer long, I've been wearing Skechers with no socks, and I've finally gotten used to how my numb/not numb toes feel in those shoes. We had some pretty chilly weather this week, and I've had to get out socks and real shoes, which has been really irritating. I'm going to have to look for some soft socks and looser shoes, I think.
I've lost about 20 pounds over the summer - a combination of feeling crappy through the chemotherapy and not being able to really taste anything. So I'm feeling good about dressing for fall. I've been buying band t-shirts at some concerts, and I'm thinking I want to wear concert t-shirts and jeans with an interesting cardigan for cooler weather. I'm a "creative" at work, after all, and I like wearing a reminder of the fun we have. It's like the "when I am old I shall wear purple" poem, only with concert t-shirts. =)

September 13, 2016

So, more surgery. It's technically called an excision, since the previous biopsy didn't find cancer cells. But, as my surgeon says, the biopsy needle might have pulled normal tissue right next to cancer cells, so it's better to get all of it out.
Once they remove the lesion in my right breast, they're apparently going to test the crap out of every bit of it to make sure there's no cancer there. The lesion is atypical hyperplasia, which is considered pre-cancerous. If they find some cancer cells, I'll have radiation therapy on my right side in addition to my left side.
Frankly, I think the odds are pretty good that they'll find some cancer cells there. It's been that kind of a year.
Tiger has been in and out of the vet's office with some serious urinary tract blockage problems. The vet has put him under to unblock and catheterize him twice, and neither time worked. Right now, he's at the vet clinic, catheterized and in a cone, getting fluid by IV in hopes we can "flush" whatever keeps blocking him out. The vet isn't real hopeful. I spent most of Sunday night crying. Losing Mango is still so fresh, and now it just makes me so sad to come home to a house where there are no cats to greet. Vinnie, bless his goofy heart, greets us at the door every time - in fact, if we take too long getting out of the car, he'll bark like he's telling us to hurry up. But not too long ago, the cats, our sweet fuzzy brothers, would be right behind him, waiting to greet us, too.
I really hope that Tiger will be OK.
As I write this, I'm sitting under a blanket on the sofa, with Vinnie (covered up, of course) beside me. He's a doofus, and has been a good, huggy boy.
Which brings me to my big "exercise" plan.
I've spent a lot of time on the sofa over the summer. The first four rounds of chemotherapy made me dizzy and sick and tired, and the final four rounds made my fingers and toes feel numb/frozen/hot/tingly, and made my sense of balance even more precarious. (It's never been great.)
So I am OUT OF SHAPE. Taking the dog for a walk with Jeff has left me winded and exhausted.
My oncologist said that the steroids I took to lessen the side effects of chemotherapy are not like the steroids that athletes take - in fact, they break down muscle tissue and make you weaker.
So, now that chemotherapy (and steroid use, and side effects) is over, it's time to work myself back up to some sort of fitness.
We've had a pretty good concert year, but it has definitely been "lesser" than it was before cancer. Part of what I love about concerts is dancing and enjoying music you love with a bunch of people, and I really haven't been up to doing that. I've enjoyed the concerts we've gone to, but I've stood (or sat) still.
I want to be back out there, dancing and jumping up and down like I have when we've seen the Foo Fighters, or Matt and Kim, or Twentyone Pilots. There's something that just feels transcendent, when you're tired and old, but the song that's playing is so good you've got no choice but to jump up and down with the rest of the crowd. I want that again.
So I'm starting slow. Vinnie and I are taking 30-minute walks every day after I get home from work.
Not too long ago, on the same walk with Vinnie and Jeff, I literally was huffing and puffing, out of breath from walking a slight incline toward the end of our walk.
Today was the third day in a row Vinnie and I walked, and I was still tired at the end of the walk, but not winded. I'm getting stronger.
For now, that's going to have to be enough.