Chapter 33: Broken Heart-ware


It has been a whirlwind the last 2.5 weeks.

2.5 weeks ago I casually rolled into my routine CT scan, almost completely forgetting I even had to do it. I did the usual 4 AM wake-up and chugging of nasty “berry” flavored chalky barium sulfate and arrived at my appointment starving only to be given another large cup of the dreamy beverage to fill my empty stomach. Yummy.

Scan was over faster than it took me to chug the nasty contrast smoothie and I was back to my normal week. Out of sight, out of mind.

On Wednesday the 20th I was thrilled to be able to watch Team USA Diving as they trained in Atlanta prior to heading to Rio. I met fellow Duke Swim & Dive rock star & 2-time Olympian Abby Johnston and really enjoyed watching the divers.

Thursday morning I rolled over in bed to turn off my alarm and felt a big crunch followed by some grinding in my chest. I snoozed the alarm, didn’t think anything of it because it didn’t hurt and I couldn’t reproduce the noise when I tried, so I went back to sleep. Later I was sitting at my computer and doing a little work when I noticed that every time I breathed in deeply (something I’ve been working on a lot these days), it felt like there was a big CLUNK that encircled my chest in my upper rib area under my collarbone.

Hmm…that’s weird.

The clunk kind of drove me crazy but I still ignored it, thinking maybe it was just my posture interacting with my metal hardware in my chest. I could make the clunking go away when I improved my posture and activated my serratus anterior (for all you PT nerds out there) and still no pain.

For about 4 days I came up with every reason why this was no big deal, still not really thinking anything of it. I was able to swim and do Pilates and everything else without a problem. It seemed the clunking was decreasing anyway.

Until the following Monday when I was laying in bed and my hand was casually laying on my chest and I could feel something moving under my hand that did not normally move, even though the clunking wasn’t happening. It felt like squeaky metal. I pushed gently and felt something shift under my fingers.

I put on my radiologist hat and grabbed my chest x-ray that showed where my hardware attached and palpated, noting the shifting and squeaking feeling was right where my upper titanium rib strut (my new “rib”) attached into my sternum. I messed with it a little more and kept my cool totally freaked myself out. In a matter of seconds I had convinced myself that my hardware was broken or had detached and that I was going to have to have surgery to fix it. Seemed kind like an extreme conclusion in which to jump and I tried to rationalize with myself that it was useless to stress myself out, but I was still pretty nervous. My biggest nightmare was having to redo the surgery.

The good news is I knew better than to let myself get too carried away by worrying and it was better to face my fears than make up stories about what it could be and totally stress myself out over what was probably nothing. So I called Dr. Moore (thoracic surgeon):  I hoped that given that Monday was clinic day in his office, they’d squeeze me in to take a look at it and ameliorate my fears. Dr. Moore’s PA called me back and reassured me that it was likely not concerning, but they’d like to see me back the following week with an x-ray, just to play it safe.

They may as well have told me to come back next year. That was an agonizing thought to wait a week while my chest clunked with every breath. Meanwhile I had still forgotten about the CT scan I’d had the week before. Most patients get scanxiety every time they get a scan, afraid that their cancer would return. Me? Eh, for some reason I totally forgot about it. And I was distracted by my new alter ego, Clunky McClunkerson.

3 days later (2 weeks ago) I saw Dr. D’Amato and got some great news-my CT scan was clear. What scan? Oh yeah, that one. Even Dr. D’Amato forgot about it. All my labs were normal with no H’s or L’s for the first time in over a year and a half. Hooray! Pretty exciting. What wasn’t exciting was our discussion about radiation.

So to catch you up–we “applied” for proton radiation in early June. I got accepted in early July. We then had to get my insurance to authorize the treatment. I was told to expect a fight with Aetna. And fight we did. I told you about my attempts to reach out via Twitter and the dissertation I wrote after their initial denial. I did get their attention. After that it took a few more weeks and we found out that they denied the 2nd attempt at authorization. This brought us up to my visit with Dr. D’Amato. She said that if we didn’t have a plan in place by  mid-August that we would have to pull the plug on Boston and do “regular” radiation here in Atlanta.

It wasn’t what I wanted to hear, especially after we had been so optimistic about getting the absolute best treatment in Boston, not to mention a fun little 9 week “vacation.” But I didn’t totally lose hope yet. For the next 2 days I was on the phone with MGH. Daniel was blowing up Aetna’s phone lines. We contacted the insurance commissioner, our congressmen, REI, and anyone else who would listen and could possibly help out. What we learned was how bullshitty this situation was. Why did they deny proton therapy so adamantly, over and over again? Oh that’s right, because it’s experimental, meaning there was not enough research on proton therapy for my diagnosis.

Newsflash, morons, there will NEVER be enough research on ANY therapy for my diagnosis. But hey, it’s cool, Aetna. Just go ahead and turn a cold shoulder and act aloof like you rule the medical world and flippantly make decisions about someone else’s life based on “evidence based practice.” So insulting. To literally add more insult to injury, the person who reviewed my case both times by the insurance company was board certified in family medicine-not even oncology, let alone radiation oncology. Probably some unethical and illegal stuff going on there, but they kind of had us in a bind at that point and they knew it too. We had gone too long waiting on radiation to start that we would have to back down, because waiting any longer would render any treatment-whether proton or otherwise-much less effective, not to mention keep me on the chemo for longer than I really needed to be.

So I had two things to come at peace with 1 week ago or risk losing my mind: waiting for answers about my future treatment in radiation and about what was going on with the noisemaking in my chest. So I turned my focus inward and did a lot of journaling and meditation and just kind of breathed (clunks included) through it. A few days of that and I was really feeling good.

By the way, I came to peace much more quickly last week with the added benefit of feeling my heart burst while watching Team USA SWIMMERS practice here in Atlanta. I snagged several close ups and autographs from some fan favorites and it was such a treat to see them swim at “my” pool-the Emory SAAC. I also had a really awesome couple of swims last week-feeling stronger than ever.

Monday August 1st rolled around and it was a new month. I was in a much better place than the freak out and heart break of the week before. That was a thing of the past. I got my chest x-ray and sat calmly as Dr. Moore examined me, pressing on my chest and noticing the shifting and clunking himself. He thought maybe it was cartilage and nothing to worry about.

Then his PA came in and said that the radiologist was on the phone and urgently wanted to speak with him about “something new he saw on Ms. Granger’s x-ray.” Don’t you just love it when this happens?

I could hear Dr. Moore through the wall on the phone with a happy-go-lucky friendly tone changing to “oh, I see…” It’s a good thing I meditated so much before this. I was feeling invincible.

He came back in and said exactly what I expected and exactly what I didn’t want to hear: “Well, the good news is that nobody has ever had their titanium struts fail. The bad news is that you’re not nobody.” In other words, most of his patients are sedentary  smokers with lung cancer. Then there was me–the polar opposite of that. I’m really thrilled to not be a sedentary smoker with lung cancer, but this is an example of a time where I’d really prefer to NOT be the one-of-a-kind type!

So my fears from 1 week prior were confirmed–I had broken “heart”-ware. My heart was broken and so was the unbreakable metal in my chest.

Side note: I was still totally right in not letting myself panic too much about it. It’s certainly ok to be and feel distressed and uncertain, but not to let it overcome me. We like to think that worrying softens the blow. But really panic and anxiety serve NO ONE and certainly don’t make receiving bad news any easier. It was the mindfulness and surrender work I did after I noticed the worry that “prepared” me for bad news.

Soon my friends and family would start to joke that only Wonder Woman would break through titanium in her sleep. It lightened the mood for sure. But it didn’t take away the fact that Dr. Moore said that yes, they would have to go back in and fix it. He was going to call Dr. Mackay and see if the repair would involve the reconstruction/muscle flap that Dr. Mackay so beautifully performed.

I wasn’t even upset or angry. It was like he was telling me the plan for what to get at the grocery store. “Business as usual.” I think that coming to peace was really helpful. Not to mention at this point NOTHING seems daunting compared to the doozy of a surgery I had back in May. Or maybe I just forgot all about it thanks to the drugs.

Dr. Moore also recommended that since I was able to do everything and the clunking was not causing me any pain or dysfunction that we wait until after radiation to have surgery. Seemed logical to me. But then he threw in another whammy: no swimming with my arms overhead.

This is after I officially decided to go all-in and participate in the 1 mile swim for Swim Across America THE DAY BEFORE. COME ON NOW!

So even though I was totally cool with the surgery, I moped about the swimming thing for about 2 days. Any swimmer will agree that “no swimming with your arms overhead” is really not swimming at all and it’s totally lame and not worth it. I figured I’d just swim anyway. Swimming is all or nothing, right? Wrong. By Wednesday I came to my senses and decided that it wasn’t about anyone else’s definition of swimming, but about just completing the swim any way I could. I knew I could safely (and within the rules) kick with fins for 1 mile and with my arms at my sides. I got in the pool and proved to myself that i could do it–and lo and behold I kicked further than 1 mile, and it wasn’t so bad! Aside from the tired legs, that is.

So I was game for swimming, game for surgery, and now we just had to tackle the radiation beast.

Well, Tuesday afternoon of this week I got a call from MGH: the gig was officially off. Dr. Chen from MGH called me herself to talk through my “options” (who are we kidding, there was only one option) and she was equally apologetic and bitter/frustrated at how ridiculous Aetna had been. Not only did we have 2 denials, but they denied her request to speak with a specialist in oncology or radiation oncology. She had done everything she could. She talked to me for a good 20-30 minutes on what to expect with “normal” radiation. She agreed to consult remotely with the local radiation oncologist, Dr. Williams, and to help direct my care should we decide we would like that. I felt sad, frustrated, and somewhat defeated, but I also felt an overwhelming sense of peace. The fight was over. We didn’t take defeat lying down-we fought until there was no fight left. The preeminent proton radiation oncologists and sarcoma specialists in the US fought for me. There was nobody better or smarter to fight.

It is irrational and completely bullshit (words that every doctor on my team have echoed) but it’s not worth fighting for any more. I have to move forward and get treatment. And I’m confident that the treatment I will get here in Atlanta is going to be great! Not to mention as much as I was looking forward to an amazing “vacation,” there are 30,000 other reasons why I am so thrilled to be home for treatment.

So that was Tuesday. By Wednesday I had made about 400 phone calls and my radiation consult and CT simulation was scheduled for today (Friday) morning. Time was of the essence since we were well beyond the preferred dates for radiation therapy after tumor removal. For those unaware: CT Simulation is the first step in radiation therapy: they use special CT imaging and crazy physics to plan your treatment so they can shoot the radiation beams at you most precisely. I also had an appointment set up with Dr. Mackay to go over surgery plans. I was feeling SO good to finally have some direction!

Daniel asked me last night if I was nervous about my radiation consult and I said that no, I was actually giddy with excitement. For the first time I felt like despite the speed bump of surgery that I could literally see and taste the light at the end of the tunnel.

So we arrived at Northside this morning, waited for an hour only to realize they had to run a few tests on me before they could do the CT Simulation. This meant they had to postpone the test. Dr. Williams walked us through what to expect with radiation treatment: about 6 weeks of radiation — once every week day for 38 treatments. I could possibly expect some adverse side effects such as skin color changes or irritation and….wait for it…Candida esophagitis. My first thought was “COME ON NOW, that is what got this whole Benedict party started!!!” My second thought was “Whatever, I’m the master of Candida at this point.” I can handle it.

With that we were excited to have a plan and headed over to see Dr. Mackay. Turns out he had a better idea. Through his plastic surgeon lens, he thought it would be super difficult to do surgery after radiation because of all of the scar tissue formed from radiation. Being seasoned with operating on handfuls of breast cancer patients after radiation, he has tried his very skilled hand at all sorts of radiation scars. He argued an excellent and well-informed point. We all agreed it would be best to go ahead and do surgery ASAP and do radiation afterward. He ordered a 3D CT reconstruction to carefully image the broken hardware as he offered several suggestions for how to repair the damage depending on what exactly was broken (IE whether the strut itself was broken or whether a screw had come loose).

So, after several phone calls between he and Drs. Moore and Williams, we postponed the CT Simulation and postponed radiation yet again. Hey! We had a timeline and a plan for a good 30 minutes! I had the 3D CT scan this afternoon after several nurses did some sweet talking to work me in to a stat scan at 5 PM on Friday afternoon.

So, in summary, I woke up this morning thinking I was starting radiation (and even posted on facebook and instagram about it) and now I’m going to bed with a new plan that is not a plan just yet. I have no idea when I will have surgery because there are a few other factors to consider before we do that. Radiation will come “as soon as possible after surgery” per Dr. Williams.  I’m disappointed that I have to have another surgery, but I’m motivated to treat that as a blip on my radar and just keep moving forward.

As for the swimming, that remains to be seen. Until I hear differently, I’m still planning to swim on September 17 with bells on!

In other news, I am SO EXCITED TO WATCH THE OLYMPICS! Watching the Opening Ceremonies as I write this. So fun!!