An ode to lists

I’m a list person.  I still keep a handwritten calendar with a list of things to do on it that I either check off or put an X next to if I don’t get them done that day (I know, I’m very, very cool.)

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My husband says “wow, you do a lot every day.”  Truth:  I include things like “fold laundry” and “email so and so about that thing.”  

Similarly, when we are getting ready to go on a vacation, I make a packing list. I’ve probably been doing this for 20 years, at least, and I have a folder full of old handwritten packing lists in a folder in the filing cabinet (you know, in case we go to that place again on another vacation).  Now I’ve slightly modernized this system by keeping packing lists in Word – I have a master packing list but still save all my old ones by location.

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Yes, like I said, I’m very, very cool.

So when we were getting ready to go to Banff, I pulled up the list from the last week-long ski vacation we went on (Breckenridge with my sister’s family 2 years ago).  We drove that time, so I took off most of the liquor and food on that list, but there was still something wrong with it.  It took me the better part of the day to realize what it was.

That packing list was pre-cancer.  See, there’s a whole bunch of stuff I have to take on trips now that I didn’t before.  The compression sleeve and glove I’m supposed to wear on the plane to help prevent lymphedema in the arm where most of my lymph nodes were removed (I actually forgot that.  Oops.)  I need to be extra sure to carry my health insurance card, of course. I also need to carry the card about my clinical trial and the warranty on my breast implants.  Just for good measure I tucked in the handwritten list I finally created (after the 18th time I was asked last year) of all the medicines and supplements I take and of every surgery I’ve ever had.

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(Not mine. I don’t have pretty pictures.)

And no more getting on the plane with just my purse and a kindle – I need a decent sized tote bag to carry my medicines. The clinical trial drug has to be in its original container (a bottle inside a box inside a bag), and then I have to carry every prescription in its original bottle to show that I do indeed have scrips for valium, ativan, hydrocodone, percoset….I rarely take any of these, but I never know when I’ll need them.  So it’s kind of like how I used to take Advil, Sudafed, and Immodium “just in case.”  Now I take all of those plus about 8 prescriptions.

Once I added all of this “cancer stuff,” my packing list was done. And I quite honestly was a little bit exhausted.

I don’t know what the point of this post is, except that even when you least expect it, life has a way of whacking you in the head and reminding you that your life has changed after cancer.  It’s not necessarily bad or good — it’s just different. (I know, “the new normal.” I still hate that phrase and am looking for a different one.)

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MRI

During treatment last year, I had a couple of really bad headaches — high fevers, vomiting, and pain behind my eyes so bad I couldn’t bear to look at anything.  While my oncologist and I both figured that these were a side effect of treatment and of me overdoing things, she recommended we get a brain MRI just to be sure and to have a baseline in case of any future issues (I also have a history of headaches, and in fact had an MRI four years ago which was all clear).  The only problem was that as of this summer, I still had tissue expanders that contained metal, and an MRI would have pulled them right out of my body.  I figured neither my plastic surgeon nor I would appreciate that, so we delayed the MRI.  I could have gotten a CT scan, but I’m allergic to CT contrast and so getting one of those requires steroids and Benadryl in advance.  Not worth it.

One reason we didn’t think anything was going on in my brain and there was no rush to scan me is that my headaches come and go.  If there’s a tumor or anything else in your brain, apparently the headache is going to be constant at best and more likely worsen over time.  Still, because I had maxed out my co-payments on insurance this year, we decided to do the MRI after my exchange surgery  in mid-December just to be sure.

I fully expected the call to say “your MRI came back all clear,” and it ALMOST did, but then they said “there is a 2 mm nodule that we don’t think much of.”  Of course I needed to know why they didn’t think much of it, so I made an appointment with my oncologist to review the scans and the report.  The “nodule” is in an area where a solitary tumor would be unlikely to develop, and it’s so small that neither of us could even see what the radiologist saw.  Then again, that’s why he’s the radiologist and we’re not.  So, the plan is to do a follow-up MRI in 12 weeks just to be sure it hasn’t grown or anything like that.  Otherwise, it’s not something we need to worry about.  The nodule is also too small to be causing my headaches so it’s just one of those random things.

Interestingly (to me),  treatment for my type of breast cancer no longer calls for these kind of scans as a regular follow-up once your active treatment is over.  My doctor says it’s because it causes patients unnecessary anxiety and that any return of the cancer would cause symptoms as soon as they could see it on a scan anyway.  While I suspect that insurance companies have something to do with this change in “standard protocol,” I suppose I can see the wisdom in it.  My oncologist said she will get a scan approved any time I think I want one, so we’ll see.  I’m still slightly uncomfortable not getting completely checked out every year, but I’m glad they’re keeping an eye on my brain for now.

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Badass no more?

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When I was diagnosed with stage 3 breast cancer and decided to announce that on Facebook, I also started using the hashtag “team badass.” One of the terrible things about my diagnosis was knowing that other people would worry about me.  The knowledge of that broke my heart.  I didn’t want people to worry about me, and I could only imagine their fear.  My husband.  My mom and my dad.  My sister.  My friends who had gone through cancer.  My friends who had known Angi.  I remembered how that felt, and so I reminded you all how tough I was by deciding on the moniker “team badass.”

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Me and Wonder Woman, badasses. Right?

And I also wanted to remind myself who I was.  A year of treatment?  Fine.  I was going to put my head down and badass my way through it.  Surgery.  Chemo.  Radiation.  Two more surgeries?  Extra biopsies and scans?  Bring it on.  I was going to keep working full time and being tough on opposing counsel and, you know what, I was going to train for a marathon too.  And I did.  And now all of the treatment and surgeries are over, and so I figured I’d go right back to being my normal badass self.

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I had no idea how round my face was from the steroids.  But still wearing my badass head protector!

I mean, I had heard about “the new normal.”  And I even understood at some level that physically I wouldn’t be 100% right away, and that mentally I might still be a little foggy.

But here’s what I didn’t understand:  I’m emotionally raw.  I’m aware of my vulnerability in a way I wasn’t before.  For the past year, I’ve been given so much grace and so much love and at some level I’m afraid that all of that is going to be taken away.  That people are tired of me and my “cancer journey.”  That my co-workers are sick of me being out of the office or being too fatigued to stay late.  That my friends and family are tired of doing things for me.  And more, that my wanting those things — wanting love and grace and people to take care of me — means I’m not such a badass after all.

But you know, I didn’t use the hashtag “badass” on that first Facebook post, or on my subsequent posts about cancer.  It’s always been “team badass.”  I don’t know why I did that, but maybe there’s a lesson in it for me. Maybe it’s okay to need other people, to lean on my family, to allow my friends to support me, and even to ask opposing counsel for an extension of time when I need one.  Maybe keeping my team around me is in fact the most badass choice of all. #teambadass

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The “last” surgery – boobs!

I put last in quotations because I don’t want to jinx it — at this point, who knows?  But 360 days after my first cancer related surgery, the sentinel lymph node biopsy, it was time for my last one:  reconstruction of my breasts.  From most people’s perspective, this should have been a fun surgery.  I don’t want to even tell you how many comments I got about a “free boob job” or to “make sure I picked good ones.” (Let’s put aside that surgery is never “fun.”)

Luckily, I also had friends who had been through this before and let me know that it doesn’t work like that:  you most likely don’t get porn star boobs after cancer.  Reconstructive surgery is totally different than augmentation — with augmentation, you have something there, you’re just adding to it.  In my case, I don’t even have nipples, let alone breast tissue.  You might also recall that there was a lot of worry about my skin and how thin it was – it could only stretch so far.  We did make the decision at the beginning of the process to put the implants over the pectoral muscle – my plastic surgeon, Dr K, said most of his patients who are active, like me, are unhappy with the movement of the implants when they go under the muscle.  He said they would shift around every time I lifted weights, and I definitely didn’t want that.

So there were still a bunch of options though – round versus teardrop versus saline versus silicone versus smooth versus textured, and that’s not even mentioning size.  But again, a lot of this was out of my hands because we had to deal with the skin I had and how much it was able to stretch, as well as my somewhat unlucky combination of a wide ribcage and a short torso. My plastic surgeon, Dr. K, told me he was going to take in two different implants and see which one worked the best.  A Christmas surprise!

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Textured round on the left, smooth on the right.

Well, he ended up taking and trying FOUR different implants before settling on what are called “gummy bear” implants:  teardrop shaped, textured, silicone.  He said the round ones he tried were up to my collarbone, so while they would have given me better projection (read: a bigger rack), they would have made me look heavy and dumpy and the skin distortion would have been visible under a v-necked shirt.  I ended up with 690cc in each implant, and they come with a ten year warranty which for some reason makes me laugh.

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These are the kind I ended up with.  I don’t know if life is more beautiful, but hopefully I am?

The surgery itself wasn’t terrible, but it was still surgery.  A week out I’m still pretty sore and nowhere near ready to start running again (Dr K said a week to a week and a half, so maybe I’m just a wimp). I have been able to walk a bit and I’m almost off pain pills, but not entirely.  The incisions are tender and the implants are kind of achy.  I also had my port out at the same time, which is another incision but not really bothering me. I do have a little extra soreness on my left (cancer) side, where Dr. K said he broke up some scar tissue probably from the lymph node dissection.

So how do they look?  Well, I don’t know.  I hated them at first, and now I think they look okay.  You really aren’t supposed to judge for at least three months, so I’ll see what Dr. K has to say at my follow up.  I’m disinclined to make any changes for at least a year anyway — I want to lose some more weight, they need to settle and the swelling needs to go down, and I need to just get used to them.  It’s pretty common for people to be unhappy with their appearance immediately after cosmetic or reconstructive surgery — after my breast reduction and lift, I actually cried the first time I looked in the mirror.  It’s just weird to see yourself looking totally different than you are used to.  This time, I guess I kind of understand “you get what you get.”  I still have 100% confidence in Dr. K and that however these end up will be the best he could do in the circumstances.

And with that, I’m done with the planned “year o’ cancer.”  Although, it turns out that it’s not that easy to jump back into your previous life.  More on that in my next post!

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Ovaries schmovaries

(Don’t worry, this will be a picture-free post.)

When my oncologist agreed with my Google-assisted suggestion that the hormone suppressing medicine they give post-menopausal women works better than the medicine  they give pre-menopausal women for my particular brand of breast cancer, the obvious question was the best way to either put or keep me in menopause.  Chemo had put me into what they call “chemo-pause,” but a lot of women’s ovaries start up again after chemo is over.  I suggested that surely at my age (48) I had to at least be really close, but she said based on family history and medical background she would guess I had at least seven more years left before I would have naturally gone into menopause.  The medicine they give post-menopausal women, which are called aromatase inhibitors, flat don’t work in pre-menopausal women whose ovaries are working.  So we needed to be sure mine were turned off.

The first option was to have a shot to suppress my ovaries.  This wasn’t a good choice in my mind for two reasons:  one, my doctor said they still couldn’t be sure it would work and even if it did we would never know when I entered menopause naturally (so we wouldn’t know when we could stop the shots) and two, the shot would require me to go see my oncologist every month for the next 7-10 years.  I like my oncologist, but I spend enough time there.

The other option was to have a bilateral salpingo oophorectomy, which is a pretty fancy sounding way to say they would surgically remove my ovaries and my Fallopian tubes.  Clearly, at my age, I’m not using them anyway, so I chose that option immediately.  Also, even though they don’t think there’s a link between ovarian cancer and breast cancer in the absence of the BRCA gene, it does remove the possibility that I’ll ever get ovarian cancer.  My oncologist told me there was no real rush, but she wanted me to do it this year. (Me too, for insurance reasons.)  I had to wait until treatment was over, and due to down time wanted to wait until after the marathon and the half-marathon I had already planned.  But I needed to fit it in before the exchange surgery I also wanted to do this year.

So, two weeks after Wine and Dine, we checked in for a day surgery at the same hospital where I’ve had all of my treatment so far.  I’ve had the same gynecologist since moving back to Dallas, but she hadn’t seen Tony since the last time she performed surgery on me almost 15 years ago, so we caught up over a little chit-chat. Then she told us what would happen and left while they prepped me for the OR.  Luckily everything ran on time and we were able to start at 12:30 as scheduled.

Afterwards, she told me I was a “model patient” and that everything looked great.  There was a small cyst on one of my Fallopian tubes, but she said that was normal.  I found out today that the pathology report came back clear for all of the removed parts, so while I wasn’t really worried, that was good news.  There was one issue with the surgery from my perspective though: I woke up from anesthesia wide awake, not groggy, still in the OR, freezing cold and in a ton of pain. My doctor had warned me that I would probably wake up with a severe hot flash, so I was glad that didn’t happen, but wow that really hurt.  The anesthesiologist even told me “sorry about the pain, but you woke up a lot faster than I thought you would!”  They gave me demerol and morphine until the pain eased up.  Still, that was weird and I will be discussing it with my next anesthesiologist.

Compared to everything else that’s happened, for anyone who might be facing this surgery, it was really pretty minor.  Three tiny incisions that are healed over already.  I was cleared to run up to a mile today, two weeks after surgery, and I could have been back to work within a week to 10 days if not for Thanksgiving and the medical appointments I’ve had all this week.  The hardest thing has been that I have been very, very moody.  Part of that is probably coming off of pain pills and part of it is not being able to work out, but some of it is the change in hormones.  My doctor says it should even out within a few weeks — whether or not that means I even out to being a jerk all the time remains to be seen!

Next up — the surgery I hope finishes my breast cancer treatment!

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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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