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.

September 3, 2016

I took Tom back to Cornell for his sophomore year today. He had two tennis teammates staying over Thursday, and they all went and picked up his roommate, Gabe, from the airport and to a Cubs game Friday, and then all stayed Friday night. The teammates left at 7 a.m. Saturday, and Tom, Gabe and I followed them at about 7:30.
Dropping Tom off as a freshman was a little emotional (but in a Winge, don't show any feelings way) - I didn't really get teary until I saw Tom walking with his classmates for a new student convocation (and even then, it was just me, so nobody saw me).
Dropping him off as a sophomore ... well, I'll miss him, of course, but it was so good to see people calling out to him, and see how happy he was to be back. It was a pretty quick drop-off - I waited up in the guys' room while they brought their stuff up, then Tom walked me back down to the car and hugged me goodbye. Then I had 2 and a half hours in the car by myself. I listened to a little First Wave '80s music and then switched to one of my favorite playlists on Spotify - the "Story of Us ... So Far" from Jeff. It's music from every band we've seen together, along with a few songs we've deemed classic. It was a good mix of my own Cornell-era songs and songs that bring back awesome concert memories.
(Oh, hey, this post isn't cancer-related, at least not directly. Just thoughts.)
One of the things I thought about on the drive was scars. Well, OK, I thought about my doctor's appointment next week, and the surgery that likely will follow, and how, after my first cancer surgery, Jeff and I went to Panama City Beach and sat on the beachfront for a week, drinking and reading. But it made me start thinking about the scars I have.
My first scar is really two - the marks from the C-sections that gave me Tom and Jen.
Next, there's an appendectomy scar, followed by a scar by my left collarbone from a car crash. Then the scars from my old football injury - I broke my ankle getting to a Vikings-Bears game. They had to reset it with a plate and screws, and later, had to go back in and get all that hardware out. After that, there's a scar from my gallbladder removal.
I've got an inch-and-a-half scar at the base of my throat from a hyperparathyroidectomy. I remember being really self-conscious about it, figuring I'd wear turtlenecks and scarves for the rest of my life, until that got too hot and I figured if my little throat-slash scared people, they could just look away.
Which brings me to the numerous scars I've accumulated this year. The biopsies didn't leave scars, but the lumpectomy and lymph node removal left two angry-looking welts under my left arm. The insertion (and the eventual taking out) of the chemotherapy pump will be another scar, and the location of the mass on my right side will leave a scar close to the middle of my chest.
I'm a mess. But I'm feeling pretty good. =)

September 2, 2016

Well, the summer is ending, and I am about a week and a half out from my last chemotherapy treatment. Whew.
I almost finished with chemotherapy before I knew it - at my appointment with my oncologist before treatment, he was concerned to hear that the pain in my fingers and toes had gotten a little bit worse, even though he had decreased the amount of the drug I'd gotten by 20 percent. He gave us the option of skipping the last treatment - in the long run, missing one chemotherapy treatment isn't that significant. It was tempting, but my first thought was What if it comes back, and you didn't do everything you could to stop it? I decided to get the last treatment (and was pleased to find out that Jeff felt the same way).
So the tingling and numbness and weird pain in my fingers has gotten a little bit worse, and has pretty much taken over my feet. My feet always feel freezing cold - like I've been outside for hours, standing in the snow, to the point of pain, cold. All of my fingertips are numb. (Before, it was just my thumbs and first two fingers.) Some - and possibly all - of this, my oncologist told me, will go away. It can take up to a year, though, so this is just how it is for now. It's better than cancer.
The cold feet thing is super weird. I keep wanting to warm them up - putting them under blankets or against Jeff's legs - but they really aren't cold at all. My feet were so cold a few nights ago that I got out of bed and found socks to wear.
It doesn't quite feel real that I'm done with chemotherapy (but then again, it has never really felt real that I have cancer in the first place). Jeff has joked that next Wednesday, we should go up to Madison and just do fun things. We will be heading up there next week - I have an appointment with my surgeon on Sept. 9. I'm ready to move on to the next step, which looks like it will be surgery to remove the mass in my right breast. Jeff is convinced there shouldn't be anything there - that the chemotherapy should have killed everything off - but we'll let the surgeon decide. I had a biopsy done on the mass at FHN before I had my first surgery, and the results came back negative, but my surgeon said - and I agree - that a biopsy is just a look at one part of the mass. There could be cancer cells right next to the ones that got biopsied. Also, the type of mass it is, according to my oncologist, is more likely (than normal cells) to turn cancerous. So, let's get it out.
After that, I'll have radiation treatments here in Freeport. I'm not sure how long that will last - it seems like 5 or 6 weeks is the standard. So I may not have this all wrapped up before the end of the year, but it'll be close.
I'm hoping that my hair will grow in quickly. (Before all this, my hair seemed to grow fast.) My head still looks stubbly and weird. I'm definitely going to need some nice warm hats this winter, and I won't have to worry about "hat head"!

August 5, 2016

Well, it's been some time, hasn't it? Cancer-wise, there hasn't been much to talk about. Just going through chemotherapy. I've finished the four rounds of "AC" - the red stuff so corrosive the nurses had to push it with a big syringe so they could make sure none of it escaped the IV to do I-don't-know-what to my skin and the other stuff that was also super-poisonous but less dramatically so.
I've finished two rounds of Taxol, which is supposed to be easier. And it is - it doesn't cause nausea, so there's no lying around feeling just dizzy and sick enough to not be able to do anything.
And, by the way, I've had a pretty awesome summer, even around the cancer crap. We had a family vacation in Milwaukee at Summerfest (missing only Tom, who is in the Poconos being a camp counselor) and going to a bunch of other concerts and generally just having a good time. I feel kind of guilty, sometimes, because my social (concert-going) life hasn't slowed down all that much, but I'm working only half-time. My feelings on that (I forget if I've shared them here before) - I don't want to save up all my energy to go to work and then be exhausted the rest of the time and feel like I'm missing out on life. It turns out, actually, that working a half-time schedule is just about right, even given my new, "easy" chemotherapy.
Taxol, my oncologist warned, can cause bone pain and neuropathy, which is nerve damage that causes the pins-and-needles feeling in your feet and hands. He knew what he was talking about - the Friday after treatment, I start feeling achy all over, like I've got the flu. The first time, it lasted well into the next week, but I was able to cope with it with someVicodin (yes, it was prescribed for me) and get back to work regular hours by the next Wednesday.
The second treatment, though, I had a getaway planned with Jeff. Two nights (and two good concerts) in Madison, the Thursday and Friday after chemotherapy. Thursday (Motion City Soundtrack at the Barrymore) went well, but by Friday, the pain was starting to set in. We had lunch at a Buffalo Wild Wings and watched the Cubs game, and did a little shopping, but I was already wondering if I was going to make it. I did - we saw Ra Ra Riot at a free show outside the Majestic at Live On King Street. The concert was a lot of fun, but wow, did I feel awful. Saturday, we woke up, packed up and came home so I could lie on the sofa, which is what I did for the next five days. So now I know not to push it too hard. =)
Thursday, I worked six hours and went out to dinner with Jeff, and I worked a full eight hours today (Friday). Feeling pretty good, except for the fact that my feet and fingers alternate between being numb and feeling like they're being attacked with pins and needles. Oh, and there's a bonus - sometimes, out of nowhere, I get a sharp stabbing pain in my leg or arm. I almost dropped a wine glass at dinner Thursday, and feel like my leg is breaking out from underneath me at times, so there's that. In case I wasn't graceful enough in my normal life.
Oh, and just to lodge one final complaint: I can't even go bald right. I've never lost a bunch of the dark stubble on the top of my head, so I look all weird and scrubby. C'mon, get it together!
Overall, though, I think I'm doing OK. I've been really, really low - spending days on the sofa feeling like you've got the flu will do that to you - but I've also had moments where I've been able to appreciate just how good I have it.
I have two more chemotherapy sessions to get through, then radiation and surgery to remove the mass in my right breast. I don't know what order that will be in - I should probably start talking to my doctors about that, huh?

June 3, 2016

So, maybe I'm doing this all backwards, or in the wrong order. I don't know. I'm making this up as I go along. But yesterday, I scheduled a small surgery to get a chemotherapy port put in.

This was Chemotherapy Week, and on Wednesday, I had no fewer than 5 nurses try to locate a good vein for my infusion. I only ended up with 3 sticks, but ouch! 

So, I'm scheduled for a port insertion on June 13 here at FHN. It's a simple surgery and, according to a lot of people in the triple-negative breast cancer group I'm in on Facebook, well worth it. (A few of them even had their port put in after a few treatments, as well, and reported they were really happy with it.)

In other good news, we talked to my oncologist about our vacation plans, and he agreed we could push back the next couple infusions to accommodate a fun Summerfest. So I won't go back in for chemotherapy for another 3 weeks, then I'll have another 3-week break before I start the Taxol.

It's still kind of weird to have no hair, but I am really enjoying the super-quick showers. I've gotten a few hats (including an SPF 50 one with a chin strap for Summerfest!) and scarves, etc., but I'm most comfortable with nothing on my head. I wear a hat when we go anywhere, but I pretty much take it off whenever we sit down. It's weird to eat with a hat on. 

Memorial Day weekend was a really nice one. We had a cookout at Jeff's parents' house on Saturday, and all the brothers were there. On Sunday, we met up with Nick, Abby, Rich and Helen for supper here in Freeport, then went back down to Lanark for some quality time on the screened-in porch. Monday, Jen marched in the Memorial Day parade. Kind of a low-key, nice weekend, and I felt pretty good the whole time!

I'm officially down to part-time at work, which has lessened my stress about getting in to work or using vacation time or unpaid time off. I think that's helping contribute to how I'm feeling, which is surprisingly good for two days post-chemotherapy. I'm hoping this lasts. =)

May 23, 2016

I am ... not good at updating this in a timely fashion. I think it's because I still haven't decided if it's some sort of dumb diary or something meant for friends and family to keep up with, or what. So I'm just going to keep on writing, and avoid TMI stuff. Who needs to know that, anyway, right? And I sure as hell won't want to read about it in a year or two, when I've got hair again and can plan fun stuff any time I want.
Yeah, I snuck that in about the hair. My hair has never really been that much of a thing for me, but I've been awfully hesitant to think about it being gone. But over the weekend, I started to really shed in earnest, ew, and it was just time.
I had RSVPd to an anniversary party for one of my bosses and his wife, so Jeff and I went to that Sunday - ohmyGod how awesome that cake tasted - and then we went to Walmart to get some groceries and a shaver.
I was prepared to buy the absolute cheapest thing they had, despite my hometown's (and my family's) allegiance to Wahl Clippers. I was lucky - they had a super-cheap Wahl model, so I was able to support my hometown business. (Yeah, this is from the girl who still prefers Rubbermaid stuff to Sterilite, YEARS after being let go from Newell Rubbermaid's corporate communications department.)
So, we got the clipper and went home. Jeff pulled up a dining room chair and we draped it with sheets, and he got to work cutting off my hair. We started with the teeny little scissors I've used to cut my bangs when they get too long and I'm too lazy to go to a salon. It felt weird.
I had been worried that Vinnie wouldn't recognize me. He's kind of a jerk to boys and men, and I was afraid that, without my hair, I'd look like just some shiftless teenage guy to be barked at. While he chopped away at my hair, Jeff joked that it was probably best for Vinnie to see what was happening.
I was a little bit teary, and Jeff did such a good job. He has really been so strong for me, and I don't think I can adequately say how much he means to me. When I feel graceless (which is a lot of the time), I think of his grace, pulling us both through this.
So anyway, now I'm bald-ish. I'm getting used to it - it's nicer than shedding, frankly. No photos, at least for now. I have been out in public, though not intentionally: We drove through Wendy's for a cheesey baked potato (oh, yum) and supper, and I had to go to the restroom. (There's your TMI.) I had a soft purple hat on, so I ran in, ran into the bathroom, and ran back out. Nobody pointed or screamed, but I'm not sure there was anyone other than employees there, anyway.
Today, I should be back at work, but I'm still feeling crappy and woke up with a sore throat and a slight fever. (The threshold for having to go to the hospital is 100.8; I'm at 100.0.) So I'm sitting in our front porch with the windows open, smelling the lilacs and enjoying the day. I've sent photos of birds at the new bird feeder to Jeff and found a project for us for our patio, and hey, I'm up to date!

May 13, 2016

Everything is a journey now. Having a baby is a journey, with the requisite stuff you have to do, which appears to include revealing your news with a professional photo shoot, sharing the sex of the baby (before you meet him or her) via an elaborate party and tons of other Pinterest-y stuff I am SO GLAD I didn't have to do.
Cancer is a really shitty journey. Apparently, there are some requisite events and frankly, I'm not interested. I didn't cry for days when I found out. I don't think I cried at all. I remember being super frustrated when I was waiting for test results and being weepy then. Some of the kindnesses people have shown me have made me tear up. And for some reason, sometimes when I'm in the car by myself the thought just pops into my head: This could kill me. It's scary. So I get a little teary-eyed and figure well, let's just get home so we're not crying behind the wheel, and the feeling is gone by the time the garage door closes.
I had surgery, and it was fine. It's healing, still, and I know I have more surgery in the future - my surgeon wants to get rid of whatever the hell is in my right breast (and I'm in favor of that), and I'll probably have to have a port put into my chest for easier chemo access. I'm cool with that. Bring it on.
But chemotherapy? So far (one treatment in, a week and two days ago), chemo is ... oh, to hell with the travel metaphor and chemotherapy being a part of the journey. Chemotherapy sucks. I hate it. I hate that it's shortened to "chemo." There should be a much more sinister, foreboding, evil-sounding name for chemotherapy. Poison therapy. Abject misery. Awful, horrible, sickness that you're doing to yourself.
The actual administration of the chemotherapy wasn't bad. The nurse got a vein on the first try, and she gave me a blanket and a popsicle to eat while she "pushed" the first drug - two huge syringes full of what looked like red Kool-Aid. One of the side effects, apparently, is getting sores in your mouth, and that can be alleviated by keeping your mouth cold while you get the medicine.
Jeff and I joked that it was kind of badass - there were big biohazard stickers on both of the syringes and the IV bag with the other medicine I'd get. We even took some photos of the warnings on the bag, and I took a selfie in my chemo chair.
I had the first treatment Wednesday (May 4) in Madison, and Jeff and I stopped at Panera for lunch afterwards. I was loaded full of dangerous drugs, anti-nausea medications and steroids - I was feeling fine. We went to Jen's band ice cream social that night with Jeff's parents, and ate at Culver's afterwards. I felt pretty smug. Look at me, going out to a concert after chemo!
That ended fast. The next morning, I couldn't sit up without feeling dizzy and lightheaded. No nausea, but I felt awful, and continued to do so all day Thursday and Friday, and into Saturday.
It's hard to describe how I felt, partially because I am unwilling to try and remember it. Jeff and I talked about whether we should or could discontinue chemotherapy. I felt like someone had pulled the plug on my life, and it had just fallen into a deep pit of misery and disappeared. I felt like a screw had come loose somewhere in my body - in my life - and everything in my life had collapsed.
Sunday, Mother's Day, had some good points. I was hungry. I suggested we go to Applebee's for lunch, but then my stomach freaked out, sending me to the bathroom and Jeff to the grocery to get some chicken to grill. I had half of a chicken breast and some quinoa/rice mix, and it was delicious.
After lunch, Jen had a surprise for me - we were going to a painting party at Higher Grounds. I've been interested in these, but hadn't worked up the nerve to sign up, so it was a very cool Mother's Day present. My stomach was still upset from lunch, so I spent some time during the party in the restroom, but Jen and I both produced passable paintings of a mother and baby elephant walking in the sunset. (Jen's was better than mine. I am not an artist.) I felt kind of conspicuous, getting up twice to use the restroom, but Jen took it in stride, filling me in on what I'd missed. We had a really good time, and picked up Tom afterwards for a trip to Union Dairy.
I hadn't been back to work since Tuesday, and being up and around on Sunday seemed to go relatively well, so I set out to go to work on Monday. I had figured out by then that getting up early and taking an anti-nausea pill, then going back to bed for an hour or so nap helped to ease the dizziness, so that's what I did, and got in to work around 8. I talked to my boss about what was happening and how I hoped to handle work during treatment, and did a little work. I was pretty dizzy, though, and went home after about 3 hours.
I made it a little longer Tuesday, and felt a little better.
Wednesday, I felt like a human! I worked about 6 1/2 hours before I needed to go home and sleep. It felt so good, though, to be walking around (albeit slowly) like a normal human! Jeff and I went to Jen's orchestra concert, and we picked up some supper on the way home. I went to bed feeling pretty good.
Thursday was a less good day - I had (fried) chicken strips for supper on Wednesday, and that didn't work out well. I worked for a half day and went home - and then Jeff and I went up to the High Noon Saloon in Madison to see Something to Do and The English Beat! I drank a bunch of water (no alcohol) and didn't move around a whole lot, but had a great time. A little voice inside my head kept saying "I'm back!!"
Today, Friday, I worked a full day - I could hardly not, after skipping out early on Thursday and then going to a concert - and had lunch with Jeff's parents. And now it's 10:30 p.m. and I'm still awake, drinking tea and finally catching up here.
We're going to continue with chemotherapy. I have an appointment next Wednesday, and an appointment with the wig salon, too. I still have my hair, but I'm afraid to do too much with it - I really dread it falling out. (Which should start around Wednesday, when the whole "feeling awful" cycle begins again, oh joy.)

April 27, 2016

Back from Florida, and off to the doctor ... we met with my surgeon here in Freeport this morning. The margins were good, so they got all of the cancer out. I have a minor infection at the incision site, but he figured that they won't need to do anything else; he prescribed some antibiotics to help it clear up.
He also talked about a different type of genetic test he thought I should have - the Oncotype DX test. It apparently helps them identify patients who are more likely to have a reoccurrence of cancer. He asked if I had seen anyone at the Cancer Center, and we told him that we had an appointment at the UW later that afternoon.
Later, as we met with the UW oncologist, I mentioned the Oncotype DX test - he said that it wasn't necessary for patients with my type of breast cancer.
I thought of that moment later, as Jeff drove home. We'll be going up there at least every 2 weeks through mid-summer, and I'll be driving up again tomorrow for an echocardiogram. But all the driving is OK - I feel like I'm in good hands up in Madison, where all my doctors know what kind of cancer I have.
We talked again about what will happen with chemotherapy, and set up an appointment to see the doctor and begin chemo next Wednesday. It's pretty fast, but I'd rather not sit around and think about it, anyway. Let's get it started, so we can get it done.
One thing the oncologist said stuck with both me and Jeff today:
He said that if 100 women in my situation (post surgery) with my type of cancer decided to skip chemo, about 35 of them would develop cancer again or elsewhere in their body, and die.
If 100 women in my situation with my type of cancer all had chemo, about 20 of them would develop cancer again or elsewhere and die.
The 20 percent number is kind of scary, frankly. But it's better than 35 percent.

April 19, 2016

OK, back to the present day! I am sitting on our balcony as I write this; soon we'll head down to our beach chairs to enjoy this gorgeous sunny day. I just have some random thoughts that I want to remember.
At each quarterly M45 staff meeting, names are drawn for STAR awards - it's a way to thank people who have gone out of their way to help. It's a nice tradition, and it always makes me happy to hear the many ways people have helped each other at work. Another tradition is that one name is drawn, and that person can choose a charity to receive a $45 donation from the company. This quarter, Mindy Becker's name was chosen, and she chose to give the donation to the FHN Leonard C. Ferguson Cancer Center in my honor. That was a really beautiful thing to do, and it means a lot to me. =)
In other super-weepy news, as we were headed east on US 20 last Saturday, Jeff told me to look at my Spotify inbox. He had made a playlist - "The Soundtrack of Us (So Far)" for me! It had all the music we talked about the morning of my surgery as an introduction, and then turned into a very big Rogepalooza list. It's 17+ hours long! It made the car ride down here so much fun, remembering the concerts we've been to and the music we've loved. I usually fall asleep in the car, but I didn't this time. =)
Our typical routine when we're here in PCB is to settle in to our beach chairs, open our beers, and read. I love it. But yesterday, we popped open our beers ... and just kept talking. I didn't read a word all day. (I did, however, nap after we'd had all our beers. =) Jeff was able to get some reading done.) I feel like the luckiest person in the world, having a husband to talk to for 17 hours of car ride, then some more the next day. We usually snicker about "hashtag people," but I really am #blessed.

April 15, 2016

I have tried to be as honest as possible in terms of when I write things here, so I'll confess right up front: I'm writing this on April 19. The date of the post is significant, however, so I'll just carry on.

On Friday the 15th, I had settled in for some TV watching when I got a call from the Madison area code. It was Dr. Greenberg, the surgeon we met with for a second opinion. As part of that process, FHN had sent all my reports and pathology stuff (slides? specimens? bits and pieces?) up to UW for their review.

FHN had ruled that the biopsy of my right breast was non-cancerous. I understand the risks of that - what if they just "missed" the cancer cells? - and was fine with not worrying too much about that right now. I'm headed for chemo, anyway, and chances are that would wipe out any cancer cells that may have been hiding.

But the doctors at UW had a different opinion. They hadn't found cancer, but they had found cells that are typically a precursor to cancer. (I can't remember the exact term - all I remember is "hyperplasia." The "next step" in those cells development could be DCIS, or ductal carcinoma in situ.) Dr. Greenberg felt we should remove that spot, as well. We went over our schedules - me leaving for Florida and she will be out of the office for a few weeks starting the day I get back. I told her that we are really leaning toward moving "home base" of my care up there, and that I would get in touch with the oncologist I met. She assured me that getting rid of the spot on the right breast isn't a super-high priority, and that she can work with the oncologist to schedule a time for more surgery.

Again, I'm super-impressed that an actual doctor called me. (Yeah, I know; I'm easily impressed.) I just really like that, and I feel good about continuing my care up in Madison.

Later that day, I had to take our car in for an oil change (we drove to Panama City Beach). While I'm sitting there, my primary care doctor walks in! He knows me, and asks how I'm doing. He's a really nice guy; Drew actually roomed with his son (and still shares an apartment with him) in college. It was nice to see him, and reassuring that he knew who I am and what is happening. 

April 11, 2016

Oh, my gosh, I'm so miserable. In typical me fashion, I caught a cold after my surgery, and apparently, my body has switched its focus from cancer to snot production, 24/7. And I'm a freaking overachiever.
Apart from the crappy cold, I'm feeling pretty OK - still tired, and doing pretty much anything makes me break out in a cold sweat and want to lie down for a few hours, but I'm not having much pain at all.
I have two incision spots; one for the lumpectomy, which is closed with glue (?!), and one for the lymph node biopsy, which is closed with stitches. The glued spot is purple and pretty much painless. The stitches had a bandage over them which I removed on Saturday. I've replaced it with another big bandage to keep the irritation level as low as possible. Not much to see, and like I said, right now my biggest complaint is nonstop mucus production. Tough life.
We have an appointment with the surgeon on Wednesday (April 13) for a post-surgical check and to find out the results of the tests on the lymph nodes they removed.
They removed 5 nodes, and after the imaging done in Madison, I'm not too concerned that the cancer has spread. I could be surprised, of course, but since I'm prepared for chemotherapy and radiation anyway, I guess hearing that a few cells had gone rogue wouldn't be all that devastating.
With triple negative cancer, as the UW surgeon said, you pretty much just assume that some cancer cells are out there, and go after them with everything you've got. It's kind of comforting, in a weird way; I like the idea of nuking everything, just in case. (I bet I'll like it a lot less while I'm in the nuking process, but for now, it all gets to be some far-off scenario.)
I think we are going to make UW-Madison our "base" for care from here on out. I am hoping to be able to have some of the chemotherapy out of the FHN Cancer Center here in Freeport, but I have really liked the atmosphere up there. They are very "big picture," and I like that.
My surgeon, being a surgeon, has been really focused on his part of this process; cutting out the tumor. All indications are he did an awesome job! But my part of this isn't over. It's hardly started, and I'm trying to keep that in mind so I don't get all cocky.
It isn't the surgeon's job to remember what kind of cancer I have, so when the nurses and techs in the pre-OR room couldn't get an IV started and I joked that I see a chemo port in my very near future, he didn't have to get that (lame excuse for a) joke.
He mentioned it after the surgery, even - like, "was I supposed to be putting in a port?" We had talked about it in his office - he preferred not to do the lumpectomy and port placement in the same surgery, (no sense even taking the tiniest chance of spreading cancer cells around) and that was fine with me. I just know that it's coming.
My point - and I do have one - is that I'm a big enough baby that I want people (more specifically, medical professionals) around me who know where I'm at in this "journey" (ugh) and where I'm headed. I want to know as much as anyone else in the room (I am still me ...), but I don't want to have to drive. I just want to be a super-well-informed passenger. Who gets to have an opinion (OK, the last word) on everything that happens.

April 6, 2016

It's probably kind of ... odd to call the day you have cancer surgery a good day. But hey, I'm embracing the oddness.
We reported to the hospital at 9 a.m. sharp, and soon I was in a green hospital gown, waiting to be taken to radiology for a lymphoscintigraphy. I knew it wasn't going to be good - the nurse didn't talk about what it was, just kind of said "you'll go down for your lympho, and then up to surgery!" like she didn't want to talk about it.
The nuclear medicine person filled me in. Four shots of radioactive material just barely into/under the skin of the nipple. "We've tried different ways to numb the area," she says, "but they all just ended up hurting more." So, it turns out the worst part of the day was to be the first part of the day. Yikes.
Actually, it wasn't all that bad. It hurt, but it wasn't a prolonged shot - that's what I expected, because that's what it's like when they numb you up for a biopsy. This was a quick, intense pain, but then it lessened pretty fast. Maybe the radiologist talked it up so much to make me feel brave for getting through it. (It worked.)
After the shots, I spent about an hour in a big machine to provide a "map" of my lymphatic system, so the surgeon would know which lymph node to remove and examine to determine if the cancer has spread.
And after that, more barbaric fun - the radiologist used a needle to thread a wire into my tumor, giving the surgeon a well-lit path for the surgery. Uncomfortable, but not all that bad.
Then, finally, I was wheeled into the pre-op room. I talked to the anesthesiologist and my surgeon while an unlucky nurse tried multiple times to start an IV. It turns out the veins on my right side aren't easy to stick.=( Eventually, the nurse anesthetist gave it a couple tries and finally succeeded. Everyone apologized (over and over) about all the tries, but it wasn't that bad, either. (Plus, I knew the good drugs were on their way ...)
The last thing I remember is the nurse anesthetist giving me something that would relax me. Then I woke up in my hospital room, and Jeff came in - with Jen, and Tom! Tom had borrowed a car from a friend at Cornell and drove in to surprise me. It worked, and seeing both Tom and Jen made me almost unreasonably happy. =)
Jeff's parents came in a few minutes later, and we all had a nice visit. Jeff filled all of us in on the surgery - either 4 or 5 lymph nodes were removed, along with what the surgeon is pretty sure is all of the cancerous tumor. Final testing will take a few days.
I'm kind of sore - watching the clock, in fact, for my next dose of Norco - but we have finally started getting rid of this cancer crap, and I'm happy.
That's right - happy. (Take that, cancer.) I have an incredible family I love to pieces, and a good life. And I've started to kick cancer's ass.

April 5, 2016

So, today has been weird. Jeff and I went to the UW-Madison Cancer Center yesterday for a second opinion, and talked to a really great team of people. I'm having surgery tomorrow, so today is my last day at work for a while, and I've spent most of the afternoon typing up instructions. And I cleaned my desk up a little bit. It was pretty bad.
Today is also our 13th anniversary. That's pretty cool. =)
So, yesterday: The surgeon advocated for chemotherapy before surgery. The oncologist (who reminded both me and Jeff of House's oncologist friend on the TV show {and me of Neal from Dead Poets Society, in what I'm going to take as a nod to you, Christy, up in heaven}) was more of an "it's your choice" guy - both ways (surgery first, then chemo and chemo first, then surgery) have the same success rate, so it's basically a personal choice.
Well, seeing as I had surgery scheduled for 2 days later, we chose to do surgery (at FHN) first, then chemo, perhaps up at UW-Madison.
I'm going to be really vain and selfish here, but
A) I'm not ready to lose my hair yet
B) I want things to start happening NOW, and
C) my three-week convalescence will wrap up with a trip to Panama City Beach and New Orleans (where we're seeing Duran Duran as part of my Christmas gift)
So, surgery it is.
I'm glad we went up to Madison, though. Everyone we met with was extremely nice and made it clear that we can choose to do any part of the treatment up in Madison, or in conjunction with Madison. The surgeon ordered an ultrasound of my lymph nodes on the left side (which looked clean, whew) and the oncologist ordered some blood work. I was extremely surprised when the oncologist called me back himself to let me know the blood work all looked good, too. Like, an actual person with an MD called me - I can't usually even get that to happen when I need to talk to a doctor for his own promotion at work!

March 30, 2016

You're still here? I can see it every day in my co-workers' faces. It's like when you're pregnant, only nobody is going to playfully ask "hey, shouldn't you have had that cancer surgery by now?"
Wow, has it been a long while. We've been waiting for the genetic test results, and holy crap did they take a long time.
The surgeon was out of the office on Monday, and it turns out the oncologist is out all this week. Huh. That's nice, since the test results are going to be emailed to him! After a couple days of increasingly desperate and teary calls to the Cancer Center, they call the testing company and ask that the results be faxed over so I don't have to wait any longer.
They're negative! So it looks like my surgery will be a lumpectomy. I got the first available appointment with the surgeon (Friday morning, ugh!) and am hoping to get this show on the road next week.
I also called up to the University of Wisconsin Carbone Cancer Center in Madison and scheduled a second opinion. So Jeff and I will head up there Monday morning to meet with a badass-looking lady surgeon and possibly an oncologist.
I was really impressed with how fast the UW people "mobilized" (for lack of a better word) and got me in ASAP. I do like my FHN surgeon and oncologist, but let's be honest, here - they've let me dangle in the wind with no clear plan for what, almost 3 weeks now. And yes, if you look at the UW website, they have a whole patient navigator team, which isn't possible for a small place like FHN. But as much as I like FHN and its people, I kind of like having a person whose job it is to make sure I'm not dangling in the wind. So we're going up to Madison and we'll see what happens.
Not too long after all the appointments fell into place, Jeff got us tickets for the next installment of Rogepalooza - Mute Math at the Majestic Theatre in Madison on Saturday. I'm really looking forward to it. I feel like we have made some progress and are doing something about the cancer.
It's been a pretty crappy time lately, and I keep thinking that yeah, waiting is bad but wait until chemo or radiation or surgery ... I'll wish for the days when all I had to do was wait. I'm trying to be as calm as I can; it's just been difficult lately.

March 25, 2016

Yesterday, we had a little break from cancer. And poor Jeff only had to have his eye lasered to make it happen!

As we were eating supper Tuesday, Jeff remarked that he was seeing "floaters" in one eye, and that they weren't going away. Being, well, me, I remembered when one of my friends at work had to drive her daughter to Madison to take care of a detaching retina. It was an all-out eye emergency, and I remember my friend saying she was so glad she had taken it seriously. I shared this story with Jeff and, being the calm guy he is, he said he'd go see a ophthalmologist the next day. I looked up the doctor's office number and texted it to him, just to make sure.

So he called Wednesday morning and after some referral nonsense, he got an appointment for later that afternoon. He'd take a short day at work and come home for the appointment, and I'd see him after he got off work.

When I got home, there was a text on my phone - he had a retinal tear, and we might be headed to Rockford or Madison that night to get it fixed. I packed us a suitcase, but by the time I was finished, Jeff was home with an appointment for the next day with a retinal specialist in Berwyn. I emailed work that I wouldn't  be in the next day, and we got ready to leave early in the morning for his 9:30 appointment.

He did, indeed, have a retinal tear - the doctor said it was actually two small holes. Yikes. No big deal, though, apparently - he would laser the holes to close them up and see Jeff back in three weeks. 

!!?? I would call that surgery, but apparently it's a minor procedure. The nurse walked us back to the procedure room, got Jeff seated in a chair and gave me a pair of glasses to wear while the doctor lasered my husband's eye.

There is literally no recovery time when a doctor lasers your eye. Jeff drove home from his appointment. Well, he drove to Rockford, where we had lunch and some beers at Old Chicago. Crazy. They (Old Chicago) have some sort of partnership with Generations brewery here in Freeport, and they had a very good beer made with lemon and marshmallows. We liked it so much, we stopped at Generations and got some growlers!

We talked about our vacation plans, and about some shorter-term plans (back to Old Chicago this Saturday for some basketball!), and just generally had a good time. We talked about our concert plans - if all goes well, we'll have seen 27 bands before Summerfest this year. (Last year, we had seen 10 bands before Summerfest, and ended up seeing a total of 52 bands, so we've got a goal to exceed that number this year.)

Right now, cancer is a scary thing, but it doesn't feel real. I'm sure it will feel real soon enough, after surgery, chemotherapy and more. But we're making plans. I might not be dancing around, but having cancer isn't going to keep us from having fun and doing what we love, together.

March 23, 2016

Surely, I'll get some news today, right?

I hold off until the afternoon to send a message to my surgeon's nurse, asking about the biopsy results.

Her chilly reply is that the doctor will be out for a long weekend until next Tuesday; "we'll be in touch" then to discuss the next steps.

Oh, hell, no. I call the Cancer Center and explain my predicament. They take my phone number, and within an hour, my oncologist's nurse calls me back with some news - the right breast biopsy is negative for cancer. 

We still don't have the results of the genetic tests, and I'm just going to assume that no one with a medical degree is going to do or say anything until those are back. And hey, my surgeon isn't around until next Tuesday, anyway!

March 21, 2016

Things not to tell your patient after you've canceled her surgery and before you order a test where you won't know the results in less than a week:

Your biopsy also told us how fast your cancer cells are growing. If the abnormal cells are growing any more than 10 percent faster than normal cells, that's something we would normally take a look at. Yours are growing 60 percent faster than normal.

Also, please be aware that all the things you're asking about as you're checking them off on your list:

Any bone pain? Swelling of lymph nodes? Unusual tiredness?

Your new cancer patient is going to be hyperaware to the point of obsession with any twinge or ache and her levels of tiredness until ... well, I'll let you know when it stops.

March 20, 2016

I’m back home after taking care of my mother for a day while her nurse had to attend a funeral. Mom needs round-the-clock care, but not difficult care - basically, make sure she doesn’t get up out of her chair without assistance, and some help with toileting and dressing. I’m glad to be able to help Mom. We aren’t telling her about my cancer. 

Tomorrow, I’ll tell the office that my surgery has been postponed and my schedule is back up in the air. Part of me is relieved - it will give me more time to get stuff done and prepare people to cover my stuff. I’m also anxious to hear some results, and to get the surgery scheduled, whatever it’s going to be.

March 16, 2016

The biopsy on my right breast hurts - it’s closer to my chest wall and requires extra lidocaine, so I’m feeling kind of beat up when I go for my appointment with the oncologist. My breasts are wrapped tight, so the nurse doesn’t have me gown up to see the doctor - they don’t want to release the compression on my fresh wound. 

One of the very first things the oncologist says is that the lumpectomy scheduled for the next week is going to be cancelled. We need to wait for the results of the second biopsy, which should take 3 -5 days, and for the results of the genetic testing, which should take 7 - 10 days. If the results of the genetic tests are positive, he’d recommend a bilateral mastectomy to greatly reduce my cancer risk. 

Having triple-negative breast cancer, he tells me, means that I’ll almost certainly need to have chemotherapy. We talk a bit about the schedule - whether I’ll be able to go on our big planned vacations for the year, to Panama City Beach in April and with the whole family to Summeriest in July. 

I’m kind of pissed, frankly, that they’ve taken away my surgery date. That surgery will tell me if the cancer has spread to my lymph nodes and give me more information and a slightly firmer timeline. But it’s cancelled - twice, actually - the nurse who draws my blood tells me she has already called the surgeon’s office, and while she’s drawing the blood, another nurse pops in to tell me that she’s called the surgeon’s office to cancel the surgery.

So, no answers for me, for the foreseeable future. 

March 14, 2016

At work on Monday, it’s time to tell everyone. A few people know - my bosses, and another two co-workers, because I texted or emailed them on Friday. (They knew about the biopsy and the Friday appointment.)

It’s weird to talk about your breasts with your co-workers. 

Because I’m me, I want to schedule the genetic testing ASAP. I call the Cancer Center, and the receptionist there hesitates, saying the surgeon should probably be referring me. In the meantime, I get a call from the nurse navigator again — in light of the diagnosis for my left breast, everyone (the surgeon, the radiologist and my primary care physician) wants to do a biopsy on the right breast. Does Wednesday work? Oh, and she’ll call the Cancer Center and arrange for the genetic test.

Later that day, I get a call from the Cancer Center — I’ll meet with the oncologist (who is also the person to talk to about genetic testing) on Wednesday after my other biopsy.

I’ve already booked a short week at work (Thursday and Friday off for basketball!), so I spend the days getting everyone prepared for me to be gone at least 2 weeks beginning the next Wednesday after my surgery.

March 11, 2016

An appointment with the surgeon - finally - and I have cancer. Dr. Barnes speaks quickly and quietly, so it’s all kind of a rush. I hear “triple-negative” and “typically aggressive but treatable” and he explains the options from here: A lumpectomy (his recommendation) or a total mastectomy. He’ll also take some lymph nodes to see if the cancer has spread. Oh, and he highly recommends genetic testing to see if I have the BRCA genetic mutation that puts me at higher risk of developing breast and ovarian cancer.

Pretty soon, the nurse is in the office. The earliest available surgery is March 17. “That’s St. Patrick’s Day,” she says, but I look at Jeff and kind of smile. We’d discussed this before. He had even said that he thought he’d be watching the first round of the NCAA Tournament by himself in a hospital waiting room, while I was in surgery.

Nope. We’ll have our two-day beer, fried foods and basketball fest. We schedule surgery for Wednesday, March 23. 

After the appointment, Jeff and I go to Benchwarmers for lunch. I need a drink, and we need to figure out how to tell everyone. We’ve got the weekend, and Tom wants to come home from Cornell with his girlfriend. 

I don’t know how to do this - Jen has known about the biopsy, and she knows about the appointment, so I’m sure she knows that I would text her and tell her if all is clear. But I don’t want to text her and tell her it’s cancer, either. So I kind of ham-handedly call the school and ask that she be dismissed early for a family emergency. When we pick her up, she gets in the car and says, “So, it’s cancer.” She’s pretty matter-of-fact, and no, she doesn’t want to go with us to pick up Tom. So we take her home and head west. 

I don’t want to tell Tom in front of his girlfriend, so I text him that we’re on our way and that I’d like to have a few minutes with him by himself. He’s immediately asking what’s wrong, and I end up telling him to just wait until we get there. It’s not a bad drive to Mt. Vernon - the sun is shining and we’re listening to music by bands we might go and see.

I tell Tom (awkwardly) in the parking lot behind his dorm, before he goes up to get his girlfriend and their stuff for the weekend. He doesn’t have much to say - he knew it was health-related, because he asked if it was about my doctor’s appointment.

Tom and Jen have been through this before. They lost their young stepsister to neuroblastoma a couple years ago. I wish I didn't have to put them through this.

It’s a pretty calm weekend - we’re all just enjoying hanging out together. I take Tom and his girlfriend back to Cornell on Sunday, and enjoy listening to the alternative 80s station on the way home, blasting the Go-Gos, The Clash and Big Audio Dynamite.

March 8, 2016

OK, I’ve waited long enough. I went in for a biopsy of a spot on my left breast on March 3, and it’s been four working days. My results should be back. Jeff has more or less taken the day off, and I’m working up until the time of my appointment with the surgeon. But his office calls that morning - the results aren’t back yet; don’t bother coming in. Would Friday work OK? 

I don’t know what to do - should I stay at work like nothing has happened? I haven’t been able to focus since they told me I would need a biopsy.

I call Jeff and tell him the appointment is off, and that I don’t know what to do. He says he’s going to take a shower and get ready for work, and we can play it by ear. I go back to my desk and try to concentrate, but I’m shaking and nervous. Forget it - I’m taking the rest of the day off.

It’s beautiful outside. When I get home, I decide ’m going to open the windows and enjoy the day. No, even better, I’m going to spring clean. Poor Jeff comes downstairs in shirt and tie while I’m cleaning out the cat box. 

Soon, he’s in sweats, too, and helping me move the furniture in the living room. The rug, I’ve decided, smells bad and needs to go. He rolls up the rug and helps me move the furniture around so I can clean the hardwood floor in the living room, all the windows and the front door open. When we’re done with our spring cleaning, we’ve got a new rug, a sparkly clean floor, a dusted entertainment center and I’m happy. For the next few days, I’m pleased just with our “new” living room.

February 26, 2016

I’ve waited so long to go in for a six-month follow-up mammogram and ultrasound on my right breast that the doctor’s orders for it have expired. So I had my doctor re-do the order, and went in. Since it’s been 10 months, the mammogram tech asks if I’d like to go ahead and get the left breast imaged, as well, since it’s close to a year since my last mammogram,

So after we get the orders corrected, she images both my right and left breast, and ushers me across the hallway to the ultrasound room. They are “keeping an eye on” a spot on my right breast, so I’ll have an ultrasound and mammogram every six months of that breast. The ultrasound tech images both breasts - the mammogram had revealed a spot on my left  breast that hadn’t been there before.

When you have a mammogram and ultrasound appointment at the same time, you get to see a radiologist, live and in person, to deliver the “all’s clear.” So after she’s finished with the test, the ultrasound tech goes out to get the radiologist.

The first indication that something is wrong is when the ultrasound tech comes in, followed by Jen, the nurse navigator, and the radiologist.

Now, I’ve done enough informational pieces and stories on the Women’s Diagnostic Center to know that they bring Jen into the equation when further testing is needed.

They’re concerned about the spot on my left breast. Can I come in for a biopsy the next week?