Disney Wine and Dine Half Marathon Recap

When my friend Chrissie and I signed up to run the Wine and Dine Half Marathon at Walt Disney World, I wasn’t sure if it would be a fun victory lap after Chicago or a back up plan in case treatment prevented me from marathon training.  Luckily, it turned out to be the former and it was so much fun!  The fun started with my Tigger costume, which was the skirt I wore as Anger last year, ears, a tail, and a shirt that my husband helped me create.

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As you can see, Disney races start at o-dark-thirty so that they can be finished and WDW can reopen the roads for the people who are just trying to get to the Magic Kingdom.  This is the first race I’ve run there that wasn’t during January’s marathon weekend, so the crowd was smaller but it still started at 5:30 — meaning we needed to be on a bus from the hotel at 3:30. On the plus side, the race was the night of the time change so we got an extra hour of sleep!

Chrissie and I got on the bus easily and hung out in our corral in the Magic Kingdom parking lot for a while, and sometime around 5:45 our corral (E) was announced and we were off! I did notice that there were less characters out, less high school bands, and no pirate ships.  Still, Disney knows how to put on a fun race and there was a decent amount of course entertainment.

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The first part of the race was pretty boring — it was apparently a new course for the Wine and Dine half but was planned to let us run through the new Pandora land in Animal Kingdom.  I felt really, really good as we headed out past the water treatment plant and into AK from the back, but I could tell I was going to lose Chrissie so a couple of minutes in we agreed on a meeting spot and she ran on ahead.  I was running about 13:30s, which I thought I wouldn’t be able to maintain but felt good enough that I just went with it.

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I don’t usually stop for pictures during races, but made an exception for Pandora (also, there was only one person in front of me in line).

After AK, we ran down the road to Hollywood Studios (if you’ve run the marathon at WDW, this was basically the last half of that course without ESPN) and through the streets of that park, which were already starting to show their holiday colors.

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I promise I was not trying to get in these people’s photo op.

Then, we ran down around the boardwalk — it gets narrow here, so I usually am forced to walk but I managed to dodge people and keep running, though it did slow my pace.  At one point we ran over a bridge and my right toe caught on a screw sticking up causing me to trip and say “Oh shit!”  Luckily I didn’t fall and there were no children in the immediate vicinity.  Oops.  Tigger has a potty mouth.

After that it was a quick trip through Epcot — my favorite part, you get to run through all of the countries and on this occasion scope out which kiosks you might want to check out later.  There are something like 35 specialty kiosks from different countries for the Wine and Dine festival, and hey we just ran a half marathon, right?  So we definitely indulged in a variety of food and drinks that afternoon and night.

Final time was 3:00:01 which has to be my funniest finishing time ever.  2 seconds away from sub-3?  But overall it was probably my favorite Disney race ever, and it was 26 minutes and 39 seconds faster than the half I ran on September 16 of this year, so that’s 2 minutes per mile improvement in a month and a half.  Not where I used to be but so much better than I was – and I intend to improve from here!  I may never be a great runner but I can be the greatest runner I’m able to be.

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You mad, bro?

So if you read the article about me in the Dallas Morning News, you’ll know that my initial reaction to my diagnosis was anger.  You also might assume that I’ve spent most of my adult life angry, being a trial lawyer and all.  Well, I’m not angry about my diagnosis any more, and I never understood lawyers who were actually angry rather than just zealously advocating for their clients.  My clients are sometimes angry, but I’m just arguing a point.  I don’t think it’s healthy to take the job too personally.

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 Me dressed as Anger.  Not actually angry.

Yet, the end of active cancer treatment means you have time for a lot of emotions to come to the surface.  There’s a little bit of PTSD involved.  Many people get depressed, or anxious, or cry for the first time.  Me?  I’m angry.  Angry in a way that surprises me.  Any enough to join a support group at my local Cancer Support Community and tell them with  sense of bewilderment, “I’m just so angry.”  (The other members of the group assured me I was perfectly normal.)

So if I’m not angry about having cancer, what is it about cancer that makes me angry these days? I’m so glad you asked.  In no particular order:

  • Cancer ruined Halloween for me, at least for the last 2 years.  Last year I was waiting for the biopsy results and not in the mood; this year I was in the mood and had costumes picked out and then I got a fever at the last minute and had to miss all three parties to which we were invited.  Yay.  Third year’s a charm?
  • Cancer ruined pink for me.  I love pink. If there’s a color choice and purple isn’t an option, I’ll choose pink every time.  But now every pink thing I buy feels like a statement about breast cancer.
  • “Save the boobies” or “save the tatas.”  You know what?  I couldn’t save those.  But hopefully I managed to save my life instead.  Why is it only breast cancer that focuses on the body part and not the cancer?  No one talks about saving the livers, or the lungs.  You don’t see men marching around with signs to “save the balls.”
  • That 30% recurrence rate that no one wants to talk about or hear about.  Ignoring it doesn’t make it go away.  Ignoring the women living with stage 4 cancer doesn’t make them go away, either.  (And unlike “Julie living with metastatic breast cancer” in the Ibrance commercial, most of them had to give up their careers to focus on their health and constant treatment.)
  • The stupid Neulasta on-pro commercials.  Notice all of those people have their hair?  What’s up with that?  And why do they all live in huge, gorgeous houses?  Heck if I lived there I wouldn’t want to leave my house either.
  • The lady who came to talk to my cancer transitions group (which I love) last week and said “Oh, I’m not supposed to call you cancer patients, I’m supposed to call you group members.”  WTF?  Are they hoping we’ll forget that we had or have cancer even though that’s the whole reason we’re there?
  • My cast.  OK, that isn’t directly related to cancer, but I was just getting better from chemo neuropathy and radiation fatigue and the cast means I’m back to constantly dropping things and having trouble eating dinner without using my fingers.
  • That fever I mentioned getting over the weekend?  No one knows why it happened. I have to call the oncologist if I have a fever over 100.5 (mine was 101.2) but then they were just like, “huh, weird.”  I know they’re not magicians, but it’s frustrating.
  • And along those lines, people who are sent home to die because their oncologists, even at MD Anderson, have run out of ideas.  Not mad at the doctors, mad at the universe on that one I guess.
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I’ll take all of the above?

  • People who tell me I’m lucky that I got breast cancer because it is a “good” kind of cancer.   In some ways it is, but it’s cancer.  Not feeling super lucky.
  • Still not feeling physically or mentally ok.  Apparently that may take another year (or even longer depending how the hormone blockers affect me).  Yay.
  • Everyone assuming that I am 100% back to normal and feel fine because treatment is over.  I don’t know that I’ll ever be back to the normal I was before.  But I’m certainly not there now.
  • The saying “your new normal.”  Yeah, it’s new.  It’s not fucking normal.
  • (Sorry for the potential TMI on this one.)  Turns out cancer is really bad for your sex life.  Between surgery, no feeling in my breasts, chemo, radiation, immediate menopause, and now hormone blockers….
  • People who insist that cancer patients or survivors or whatever always have a positive, sunny, grateful attitude.  Is this specific to breast cancer?  Because it’s annoying as hell.  It’s cancer, not a pink slumber party.
  • People who insist that all cancer patients are warriors, or fighters, or whatever.  I chose the title badass for myself, but some people don’t want to be warriors, they just want to get healthy in a quiet way and not think of their current life as a constant struggle.
  • Health insurance.  And I have a good policy, but who has time to fight over coverage of a wig or appeal the denial of payment to the anesthesiologist your doctor chose on your behalf?  Seriously, between this and the appointments, y’all, it takes SO MUCH TIME to have cancer.
  • Doctors being too positive and hiding the true outcome/side effects/statistics.  I had to be clear with a couple of them that I wanted the truth, not what they thought I could handle hearing.  I’m an adult, don’t treat me like a child.
  • People trying to sell me shit with faux science.  No, I’m not interested in Gerson therapy, homeopathic medicines, essential oils to cure cancer, or coffee enemas.  You do you.
  • Cancer.
  • Cancer.
  • Cancer.
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Chicago Marathon Recap

So, let’s talk about how the marathon went!  (Spoiler alert:  I finished.)

Our wave of the marathon started around 8:30 but you had to be in your corral by 8:10. We agreed to meet my friends around 7:30 at the CES race day resort.  Side note – one of the best things we did was find and hook up with Chicago Endurance Sports.  They offer a virtual (and in person) training plan for the marathon and this “resort” with food, energy gels, and indoor bathrooms before the marathon, and more food, massages, and an open bar after the race.  I didn’t use the training plan both because I have a fabulous in-person coach (and because treatment meant I needed an adjustable plan), but they were super nice and the resort was fantastic.  I was even able to pay for Tony to be able to access it once the race started so he could eat and drink too.  I was too late to enjoy it afterwards but I did get a beer.

Anyway – it was a little cold when we left our VRBO (which was on the Gold Coast and gorgeous, and cheaper than a hotel), so — as you can see by my stylish ensemble — I wore the throw-away clothes I had brought with me and of course sported my pink cast for the broken finger.  I figured pink was the right choice since it was October, and Tony decorated the cast the night before for a little extra flair.  Once we all got there, used the restroom, and grabbed water and mini bagels, we went back downstairs to meet Tony who told us to strike “runner poses” before we left.

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I am pretty sure none of us actually look like this when we run.

And with that we were off to wait.

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Can you see us crossing the street?

We split up at this point because Holly and Courtney were in a faster corral and had to go in a different gate. After we got through security Chrissie and I sat on a hill for a while before lining up which was a mistake as I ended up with So. Many. Chigger. Bites.  I also managed to get three stains on my shirt from anti-chafe gel I remembered to apply at the last minute.  Of course the stains are visible in all the race pictures.  So off to a great start!

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Ready to go!  Stains and all! But at least I lost the purple sweats.

Finally we were moving and I said goodbye to Chrissie as she ran on ahead.  We pretty quickly crossed a bridge over the river which had red carpet laid on top of the metal bridge pieces.  This happened I think 8 times during the course of the race and wasn’t all that comfortable to run on.  Since I had fallen while running 2 weeks before the race, leading to the aforementioned broken finger, I was extra careful on those sections.  I saw Tony for the first time somewhere between mile one and two and wish I had pulled out my phone to take a picture of him and all his signs – he had four as well as a backpack full of stuff I might need – body glide, extra headphones, and even an extra watch.  He was definitely the MVP of spectating that day!  But he did get a shot of me.

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I look bemused because my husband is running backwards in front of me.

I’ve always heard that you run the first ten miles of a marathon with your head, the second ten with your legs, and the last 6.2 with your heart.  I decided I should follow that advice as I was feeling really, really good at the start and was worried I’d go out too fast which people always warn against.  At the same time, I know that personally I can also mess up by going out too slow and then finding it hard to pick up the pace later on.  My watch pace, I knew from a little research, would be way off particularly the first few miles thanks to the difficulty in picking up GPS signals downtown.  So when I noticed I hit mile 2 about 15 minutes after mile 1 according to the clocks on the mile markers, I decided to try to stay with that pace for as long as I could.  I was doing pretty good for these first ten “head” miles – I did have to pee around mile 5 and stopped to hug a guy wearing a “free hugs” shirt so I lost almost 3 minutes that mile. I half-tried to make that time up, but didn’t push too hard knowing it was still early.  I saw Tony again with Holly’s and Courtney’s husbands between miles 7 and 8.  They told me Holly and Courtney were doing well but that Chrissie had stopped around the 10k mark (turns out she was fine, the tracking mats just dropped her for some reason until around mile 19).  Tony went to go pick up our rental car from the airport at this point so I knew I wouldn’t see him for a while.  Time to buckle down and keep running.

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(Apparently I really like to wave at race photographers.)

It was a warm day and the temperatures were rising quickly.  The miles blend together but I know somewhere around 12 or 13 I felt like my stomach was kind of sloshy – the water cups they were handing out (which I always take, while avoiding the Gatorade that gives me heartburn) were pretty full so I started drinking half a cup instead of a full one.  I also stopped at a medical tent around here for some Tylenol which took longer than I thought it should have.  When I fell and broke my finger I bruised my hip pretty good and even though we had taped it, my left hip was definitely achy.  By mile 14 it was tingling, which is usually a “stop running” pain, and after my sacral stress fracture last year I’m usually very strict about those.  But – it was mile 14 of the marathon!  I decided to run through the tingling and hope it went away, which it did after a couple more miles. My legs and the rest of me were getting really tired, but I kept reminding myself “second ten you run with your legs” meaning I had trained for this and just had to figuratively put my head down and push through.

 

Somewhere in this section I noticed the discarded cups weren’t being cleared as much as they usually are in races, and while the wet sponges they handed out around mile 16 felt fantastic, they were pretty hazardous to run around because people dropped them wherever.  This is a problem with being in the back of the pack!  The situation got worse later on, particularly with banana peels, and after slipping on an energy chew I ended up walking through some of the post-aid-section parts of the race just for safety reasons.

At mile 18 I saw Tony again and took some body glide from him because the gels in my pockets were starting to cause my shorts to rub on my legs.  The other guys had just left, he told me, because Holly had to stop around mile 22.  Tony was going to sit down and have a burger and a beer and I’d see him at the finish. I told him I had 2 more hours, at least, so he should take his time.  Not long after, I got a text from Holly that she had gotten really sick and had to stop at the mile 22 medical tent.  Courtney was finished by now and Chrissie was at mile 21.  I was too tired to really focus on these facts and I had always known I’d be last of the four of us anyway, so I kept on going.

Around mile 19 some wonderful person was handing out orange slices and grapes which were fantastic.  Not too long after that, the pace car passed me and they started dumping the water tables and pulling the timing mats from the course.  Luckily the volunteers still held jugs of water to refill water bottles, and spectators were handing out water as well, so I made it to the end with plenty.  Good move to keep water available on such a hot day.  I stopped again to pee at mile 20 even though I didn’t think I needed to (and I didn’t) – I’m not sure why I did that other than a vague concern about hydration or hyponatremia.  Possibly my brain was just trying to get me to stop for any reason it could come up with.

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Mile 22 – in pain but still waving!

At mile 22 my hip pain came back as stabbing, and I knew that meant I needed to walk.  I had managed to run up until that point other than a few steps here and there to talk to Tony or get through some of the street debris.  But I didn’t think much more running was in my future – the last 4 miles were probably 60-65% walking. A couple of miles later I could have sworn I saw the mile 24 sign, but then it was gone.  Luckily for me I saw a Team in Training coach I knew from Dallas right at that point who told me that indeed it was mile 24, they had just pulled the sign. I managed to get past miles 25 and 26 just as they were taking the signs down, and they did leave the final timing mat so everyone could get a finish time.  The removal of those timing mats worried Tony though, who texted me to be sure I was okay when the tracking app showed me stopped at mile 20.

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Yeah, this is how I felt near the end.

I mentioned above that you run the last 6.2 miles with your heart.  At mile 20, I decided to dedicate each of the last miles to someone and focus on them during that mile to keep my mind off the race.  Miles 20-22 were for Courtney, Chrissie, and Holly, respectively, my friends who ran the race with me as part of #teambadass.  Mile 23 was for my friend Angi aka Bubbles, whose leukemia diagnosis started me running in the first place and who I believe saved my life by getting me healthy enough for my own cancer battle.  I cried a little of course thinking of Angi, but told myself to Bubble Up and keep going.  Mile 24 was for the wonderful support group I’ve met in an online Facebook breast cancer group, some of whom are stage 4, some of whom still can’t exercise without pain, some of whom are fellow runners, and all of whom have taught me a lot about what it means to come out the other side of treatment.  Mile 25 was for my husband who spent the whole weekend getting me ready for this marathon and doing everything he could to make sure I wasn’t stressed and everything went perfectly, including leaving the room two mornings in a row before he had even had coffee (if you’ve met him, you know this is a big deal!)

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And the last .2?  That was just for me, to celebrate being alive and NED.

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I cried and ran all the way across the finish line (and then thanked my lucky stars that my watch and phone did NOT die during the race because they wouldn’t let Tony into Grant Park to meet me so he had to verbally direct me back to the race day resort).  Had a beer, took my clinical trial medicine that Tony carried all day so I wouldn’t miss a dose, and then met our friends for the celebratory champagne.  I was tired, of course, but so happy to have made it across the finish.

When I signed up for Chicago, I had hoped to run it in 5:15 or less.  Of course, I wasn’t exactly planning on a cancer diagnosis at that time, and I finished in 7:03:17.  Which, it turns out, was a 35 second personal best.  So while I don’t recommend surgery, chemo, and radiation as a training method, it worked out okay after all.  I can’t wait to see what I can do next.

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Five Finger Death Punch to Cancer

So, the plan ever since we found out that I was stage 3 (not stage 4, which would have taken away surgery, or stage 2, which might have taken away chemo) was for us to do four steps to get rid of the cancer and stop it from coming back:  1) surgery; 2) chemo; 3) radiation; and 4) Tamoxifen/Arimidex, which are two types of endocrine therapy —  drugs that prevent the cancer cells from binding to the estrogen in my body. I’m on Tamoxifen now because I’m still technically pre-menopausal despite chemo effectively throwing me into menopause; I’ll switch to Arimidex, the post-menopause version, after I have my ovaries removed next month, because it’s more effective for my type of cancer.

But right around the time I finished radiation I got a voice mail from my oncologist which I didn’t fully understand, something about a clinical trial and Ibrance and they were just opening a new protocol and she thought of me immediately.  I made an appointment to go in and see her, and it turns out that Eli Lilly had been working on a CDK 4/6 inhibitor to compete with Pfizer’s Ibrance (they run ads for Ibrance on TV, featuring “Julie who is living with metastatic breast cancer”).  US Oncology was participating in a brand new clinical trial for Eli Lilly’s similar drug, abemaciclib, but you had to have a certain type of cancer and be in a very particular place with treatment in terms of radiation and the endocrine therapy.  They wanted to compare recurrence rates between people who only took the endocrine therapy with people who did endocrine therapy and abemaciclib.

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Not really my type of music, but I admire their style.

I just so happened to be in exactly the right place in my treatment, and hearing how excited my doctor was about the drug, (and after being assured I could drop out of the study if I received the trial drug but found out the side effects were too severe) I signed up right away.  I was the first patient signed up for the trial at my oncologist’s practice, and we later learned I was the first participant in the entire U.S.!  It’s not a blind study, but I had to wait over the Labor Day weekend before I could be randomized into one of the two study arms.  Luckily for me, I was chosen to take abemaciclib!  We successfully added a step 5 to our plan.  Take that, cancer!

So, how does it work?  Beats me.  Okay, so from what I understand, a CDK is a “cyclin-dependent kinase.”  CDK 4 and 6 are particulars types of CDKs.  A CDK tells your cells to keep dividing – usually in adults, most of your cells don’t need to reproduce so their reproduction is kind of “turned off.”  One of the things that happens in cancer is that the cancer cell’s reproduction switch gets stuck in the “on” position, and in breast cancer it’s CDK 4 and 6 that they think cause the switch to get stuck.  So by inhibiting these CDKs, any breast cancer cells hanging around won’t be signaled to reproduce and they’ll die off.    Now, interestingly, you do need your bone marrow to keep reproducing new blood cells and your digestive tract’s cells are constantly reproducing.  So one of the tricks is to make sure those cells don’t get turned off when they turn off the cancer cells.  (I have no idea how scientifically valid that explanation is, but that’s my understanding of how it works.)

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This is a breast cancer cell dividing.  Looks pretty, is actually ugly.

When I started on abemaciclib it wasn’t yet FDA approved.  Last week it was approved for certain stage 4 patients and given a name – Verzenio, which I think sounds like something I might order at a tapas place or maybe a brand of wine.  They also gave it a price tag of over $10,000 a month (which is in line with both Ibrance and the other drug in this class, Kisqali, but is still pretty ridiculous, right?).  Luckily since I’m in a clinical trial I get it for free.

They told me I might have some fatigue and diarrhea from the medicine, but so far I haven’t had much of either.  Of course, there’s no way to test what it’s doing, but I’ll take it for 2 years and then they’ll compare recurrence rates at 5 and 10 years out, so we’ll see.  I’m just happy to have one more tool to use to fight the beast!

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Let’s talk about running, baby.

Let’s talk about you and me, let’s talk about all the good runs and the bad runs that may be….

Uh, sorry.  Having a nineties flashback for a minute there.  I’ve been meaning to write this post for a while but not sure what to say about my running this training season.  At the same time, I felt like I wanted to give an overview before I start doing more frequent posts about training and running and races (I mean, this is a running blog, supposedly.  Says so right there in the name.)

So most of you reading this know that I’m training for the Chicago marathon, and people are usually impressed when they find out that I trained during treatment — that I ran as soon as I was cleared after surgery and all through chemo and radiation.  I’m not going to lie, it’s been the hardest training season I think I’ve ever had.  There were days when all I could do was put one foot in front of the other.  I’ve pushed too hard and made myself sick (only once,  thankfully).  I’ve had to slow down.  I’ve had to walk on occasion.  I’ve been passed by walkers when I was “running.”  Some days, running in the morning means spending the rest of the day on the couch.

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At a 5k we ran in May, the day after one of my chemo treatments.

And I know – I GET IT – that I’ve been through, you know, a pretty difficult year. I know that a double mastectomy is a pretty major surgery and that I still haven’t finished reconstructive surgeries (the tissue expanders can be pretty uncomfortable at times).  I know that I underwent cardiotoxic chemo.  I know that I had left-side chest radiation that most likely affected my heart and lungs.  But it’s still hard to work so, so, hard at something and not get any better at it.  It’s still hard to see how long it takes me to do a workout.  Today it took me 2 hours to run a mile, run 10 hill repeats of 1/5 of a mile each (and walk back down), and then run a mile home.  Last year that might have taken me an hour and a half.  When you’re looking at 5 miles total, a half hour is a big difference.

I promised myself when I got the email that I had gotten into Chicago that I would never miss a training run that I was physically capable of doing, and I would give myself about a 93% on that – solid A.  But I also promised myself, after we ran Goofy in 2015, that I’d never run another marathon unless I had gotten faster – my first 2 marathons were 7:05 and 7:03, respectively.  I worked really hard to get faster last year, and initially thought I’d have close to a 2 hour PR in this race, or a 5 hour finish.  Now?  Based on my latest training runs, it’s going to be closer to 8 hours.  And I’m honestly really pissed off about that.  The whole point was NOT to make people wait around on my slow ass to finish a race, not to be embarrassed to tell people my time, not to have long runs that took 5 or 6 hours to complete in training.

Will I get faster?  I assume so. I certainly hope so.  It’s only been two weeks since radiation ended, and although I don’t really know how or when the effects of all of this will go away, but it’s safe to say it probably takes more than 2 weeks.  On the other hand, will I get faster before Chicago? I doubt it.  It’s 38 days away and I need to taper down before I run it, so I don’t have much time left to actually improve.

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After the Disney Paris half last September, where I got a 24 minute PR.  Will I get that fast again? Who knows?

I’m still going to run the marathon, of course.  I am capable of running Chicago, and we have our tickets and a place to stay, and tickets to see Hamilton and plan to see friends who live nearby.  I’m going to “just do it,” as Nike would say.  But I’m still coming to terms with the reality that I will probably not finish in the allotted time of 6:30 (my pared-down A goal) and I will probably not get a PR (my B goal).  Which means I’m settling for my C goal – to finish.  Honestly, I’m still working on being okay with that.  But I’ll get there. On race day, I’ll lace up my shoes and strap on my water belt and go out and toe the starting line and see what happens.  So far, that’s been a pretty successful strategy.

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Is this the end?

“Black and white soldiers alike wonder if this really means freedom.  Not. Yet.” – Hamilton

So, surgery, chemo, and radiation are all over.  And that means cancer treatment is over, right?  Sort of, but not really.  The day after radiation ended, I started taking Tamoxifen.  This is a pill given to pre-menopausal women to interfere with their estrogen receptors.  Because my cancer was estrogen-positive, I have to take a pill like this for at least 5 years to lower my risk of recurrence.  So far, no side effects, and I’m hopeful I won’t have any.  But for my particular type of cancer, the similar medicine given to post-menopausal women seems to work better.  For that reason, I’m going to have my ovaries removed in November.  Then I’ll officially be menopausal (unofficially, I’ve been in menopause since chemo started) and they can switch me to the other drug known as an aromatase inhibitor.  And in December, I’m having surgery to have my tissue expanders replaced with breast implants.  Hopefully that will be the end of the surgeries and then it will just be taking the pill and regular checkups and scans to be sure the cancer hasn’t returned.

Also because of the risk of recurrence, every weird thing that happens to me now has to be filtered through the “is this cancer?” lens.  This was made clear to me two weeks ago, right towards the end of radiation.  I hadn’t been feeling that well but decided to go out for my six mile run anyway and just take it slow.  Given that the heat index was over 100 degrees, that was a poor idea.  After I got home I started to feel much worse and ultimately ended up with a migraine and a lot of projectile vomiting.   I didn’t know if this was from radiation, or if I should be worried, so I called my oncologist’s nurse to ask.  I ended up going in for an appointment a couple of days later and being told to stay home and rest for a week, and there was at one point a plan for an MRI or CT scan of my brain to see if there was any cancer popping up there.  A little bit unnerving, but luckily I started feeling better so the scans are canceled for now – unless the symptoms return.

So it’s unpleasant to wonder if every little twinge is a tumor popping back up.  And it’s been a weird adjustment trying to remember what my life was like before all these appointments. It’s frustrating that I’m starting to get my energy back but not really feeling 100% yet.  I guess I thought everything would automatically go back to “normal,” but it’s not that simple. That’s probably why most cancer survivors talk about a “new normal.”  As my friend Carol T. said, “when you’re in the middle of a war, you don’t think about what peace looks like.”

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I thought radiation came with superpowers.

“I like your tattoos,” the waitress said.  I was startled.  “I’m sorry?”  “Your tattoos,” she repeated, pointing to her neck.  “Oh.”  I self-consciously touched one of the stickers with the sharpie marks underneath it.  “They’re not tattoos, actually.  They’re marks for radiation – I’m having radiation.”

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Some of my “tattoos.”

At the beginning of all of this, radiation was not something I spent a lot of time thinking about.  My surgeon told me right away that I’d need it.  My plastic surgeon was concerned about its effects on my skin.  But for me, surgery and chemo were the big dogs.  I’d worry about radiation later, after I’d recovered from major surgery and almost six months of strong anti-cancer drugs being dripped into my veins.

As it turned out, about halfway through chemo I realized that I needed to know when I’d be having radiation.  I wanted to plan some vacations, and I needed to let opposing counsel know when we could reschedule the trials that had been delayed since my November diagnosis.  Too, I heard about a new kind of radiation – proton therapy, which would cause less damage to the surrounding tissue.  It was unlikely that insurance would pay for proton therapy, but there was a center only 20 minutes from my house, so I decided to make an appointment to see if maybe I’d be an exception to that general rule.

Ultimately, I ended up meeting three radiologists – more than I did for any other of my therapies, which seemed odd given that I was the least concerned about this part.  First I met Dr. B, the radiologist my plastic surgeon preferred of the three at my cancer center; she’s the youngest and he thought she might be more protective of my skin.  Next, I went to the proton center where I learned that my insurance wouldn’t pay for that therapy (we tried, but they declined) because it cost more than twice as much as traditional radiation.  But, the proton doctor said, they were starting a clinical trial to compare proton and photon (traditional) radiation for cardiac effects on patients afterwards, and I was eligible for it.  If I joined the trial, I had a 50% chance of getting the proton therapy and a 50% chance of getting what I would get anyway, although I’d have to go to a different hospital than my current one.

I thought about it and talked to all of my doctors, and went and met the radiologist I would have been assigned if I joined the trial and didn’t get protons, and decided that the trial was a win-win.  Unfortunately, my insurance refused to pay for the clinical trial too!  (Wah-wah.)  So, it was back to my original hospital and Dr. B.  At the end of the day, I’m glad I tried for proton therapy, but I liked Dr. B the best of the three radiologists anyway and I liked that she was at the hospital with my other doctors (in fact, she remembered me from a tumor board session where the thinness of my skin was discussed).

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Rocking the blue gown before today’s session.

Dr. B and I agreed that in order of importance, my goals are: 1) no cancer recurrence; 2) no heart issues from the radiation, and 3) the ability to complete my reconstructive surgery.  With luck, I’ll be able to get all three. I’ve been both lucky and unlucky at times so far with this whole cancer thing, so we’ll see.

So far, I’ve had 6 of 28 sessions.  It only takes about 15 minutes and you can’t feel it.  The only side effects so far are a feeling like I have a lump in my throat and a bit of reflux (from a lymph node by my clavicle that requires radiating, causing a bit of the radiation to graze my throat), but I can expect skin side effects at the least like being sunburned (possibly pretty badly) and increased fatigue.  Still, it’s a little weird to be alone in a room with a 12 inch door due to the high levels of radiation while a machine silently whirs around you.  After the social experience of chemo which included my husband and at least one friend per day, plus chatting with nurses and other patients, this feels kind of lonely. A couple of times I find myself lying there with unexplained tears in my eyes.

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The machine that has failed (thus far) to provide superpowers.

Still, radiation is the last step in what I think of as “active treatment.”  (I need at least 2 more surgeries and will be on hormone suppressing drugs for 10 years at least, but I won’t be at the hospital on such a regular basis and I should be able to get back to my regular work schedule instead of feeling like I’m out of the office half the time.)

Normally, they wait four weeks after chemo is over to start radiation, to make sure the majority of the drugs are out of your system.  But my blood counts were so good at the end of chemo that at my request (due to work and the Chicago marathon in October) they started my radiation two weeks early.  That means if all goes well I’ll be done in mid-August and by my birthday we can celebrate that we made it through the big three of surgery, chemotherapy, and radiation!  With that in mind, I can’t wait to turn 48!

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