My year with Benedict: The Cliff Notes Version

Nah-nah-nah-nah

Nah-nah-nah-nah

Hey Hey Hey

GOODBYE

That’s the song I’m singing to Benedict and 2015. I think we can all agree it’s time to kiss that year goodbye. So if your holiday season has been anything like mine, you’ve hopefully had time to reconnect with friends and family near and far via gatherings, parties, lovely cards in the mailbox, and other things. For me this was AWESOME, and an awesome time to tell my story…over and over again, often to the apologies of people who felt bad for not keeping up with every blog post or not even knowing at all that I’d been through a bit of a journey. That’s totally ok! I applaud you-the faithful readers who tell me stories of “binge reading” all of my posts.But if you’re not that person-it’s totally cool! I’m glad you spent your time doing something else which I’m sure was arguably more interesting than reading the Adventures of Wonder Woman and Benedict (comic book to be published soon).

For those of you who are just now tuning in or have asked me for the “cliff notes” version, here ya go. My friend Kendall and I recently joked about needing to have a “Frequently Asked Questions” page. And then we were both kind of silent and at the same time said “Actually, that’s a really good idea!” So here it is. It’s still lengthy-but it’ll hopefully answer most of those burning questions that we all (myself included) inevitably have.

So–happy holidays and GOOD RIDDANCE 2015! It’s been real!

Frequently asked questions

Are you ok?

That depends on your definition of “ok.” For the most part-yes! I’m doing great!

Are you tired of people asking you so many questions?

Nope! If I were in their shoes, I would care. And I would be curious. And I would want to ask questions. So the fact that people are curious and want to ask questions just means that they care. Sure, sometimes people tell me they don’t know what to say—and that’s ok too. Sometimes you don’t have to know what to say. And the old adage “there is no such thing as a stupid question” is totally true. Ask away! Even if you haven’t talked to me in 15 years or you are a friend of a friend—that’s cool too.

 What exactly is it that you have?

I have an inflammatory myofibroblastic tumor (IMT).

 Is that like other forms of cancer?

No. This is a sarcoma, which is an extremely rare type of cancer. Sarcoma means it is made of connective tissue (the stuff that makes up the “structures” in our body: bone, cartilage, muscle, tendon, blood vessels). Sarcoma is more common in children (15% of pediatric/adolescent cancers) and less common in adults (1% of adult cancers). My form, IMT, is one of the rarest forms of sarcoma. The last study I saw on IMT said it was diagnosed in only 100 people in the USA every year. Yup, I am that lucky. Where’s my winning lotto ticket?

Where is it?

It is in the apex/right upper lobe of my right lung. If you’re looking at me, that means it’s in the space immediately between my right collarbone and shoulder blade (if you look at me from the side or top) shoulder and neck (if you look at me from the front or back), or behind my right breast/pectorals (if you look at me from the side). For those not anatomically inclined—yes, you do have ribs and lung that high—in that space between your collarbone and neck (where a necklace would normally sit).

 So is it lung cancer?

No, it is not lung cancer. It’s a sarcoma that decided to take up residence in my lung. That means it’s not made of lung cells.

 How big is/was it?

It was 9-10 cm in diameter at its largest. Remember that it is in 3 dimensions though, so do your geometry and bust out your multiples of Pi. Yep, I went there. Yep, still nerdy as ever. In other words, it was the size of a large grapefruit stuffed into my upper ribcage. I say was because I have been doing treatment for almost 4 months now, and it is now about 70-80% smaller than it was when I began treatment in August/September (so about 4-5 cm in diameter)

 Can you feel it?

I believe I could feel it when it was very symptomatic and at its largest. It was pressing on my right upper airway, the right side of my esophagus, the right side of the front of my upper thoracic spine/upper back/lower neck (and probably some of the nerves there), and my right front ribs. It wasn’t necessarily painful nor could I feel a lump or mass because it is encased in my ribs, but I did feel pain periodically in some of those places—especially if I got a cold and had a cough.

Why didn’t you do anything about it if you felt pain?

I also have a history of neck problems and shoulder issues from swimming and “grad student life” as many other people do. So I did a lot of physical therapy for this which often improved my problem and pain. So it’s doubtful the tumor caused a lot of that pain, as I would go very long periods of time with no pain at all. Plus, with a history of complex orthopaedic conditions in an otherwise healthy person, there was no reason to suspect it was a problem (see below on how long I’ve known about this). My poor (and amazing) physical therapist had enough to deal with as it was.

 What grade is it?

We don’t know. And let me just preface this answer by saying I am NOT an oncologist, so I’m just going to tell you what I was told by my very educational and patient-friendly oncologist who dares greatly to use medical terms with me since she knows I know a little bit about medical stuff and I get geeked out by this. Evidently it is very hard to grade this type of tumor because it’s so rare/uncommon and they do not all behave the same way. But based on general tumor grading, my oncologist preliminarily called it a grade II/nonaggressive tumor. This means it was larger than a certain size (I can’t remember what the exact number is…maybe 5 cm?) but had not caused any metastases (spread) to other places. The biopsy also showed a very small percentage of aggressively dividing cells, compared to other cancers whose biopsy samples show are larger percentage of cells.

Has it spread to other places?

I sure hope not. Based on my PET scan (a radioactive scan that looked at every part of my body between the base of my skull and my knees)—no! There is currently no spread that we can see. That and I do not have any concerning symptoms elsewhere. This is a good thing!

 When did you find out about this?

Specifically, I received my diagnosis on Friday, August 14, 2015.

 How did you find out about this?

It’s a long story. If you want the full version, go read this entire blog series. But to give a “brief” cliffs notes version, I’ll start from the end and go backwards. I was hospitalized at Northside on August 12 after collaps–err–faceplanting due to severe anemia. I soon learned that other than the bruises and concussion-fainting on your hardwood floor CAN be a fortuitous thing. And I also must have strong bones.

Why did I faint? Long story short-I had grown progressively weaker, sicker, and more anemic over the course of about 1.5 months from the end of June-Mid August 2015. I lost 15 pounds, was having fevers and night sweats, terrible energy loss, and a terrible relentless dry cough. Prior to that (April-June) I was under the care of a GI specialist (Kavita Kongara, MD) and fabulously amazing integrative medicine physician (Stephanie Grossman, MD) for a candida esophagitis infection (this basically felt like terrible heartburn as it was way down in my esophagus).

My integrative med physician recommended I get a CT scan for “a weird mass in my lung” that I’d known about for at least 14 years and randomly discussed with her at a visit in May. Why did we discuss this? Because integrative med MD’s want to know any and all things you and your body have ever encountered in the present and past which could be causing some of your problems now. So moving backward from there—I had had a series of chest scans at ages 17, 18, and 22 (2001-2006) for unrelated conditions that showed this mass. I was seen by pulmonary specialists at the time who took one look at me as a collegiate swimmer with zero symptoms and the picture of health. He said we would monitor it  but that there was no reason to pursue further care. The last pulmonologist I saw for “the mass” was in 2006-he believed again that I was fine and told me to “totally forget about it.” So forget about it I did. And I never really had a problem since then.

So fast forward back to the “routine” CT scan I had to check out “the mass” in early June. It showed that the mass had nearly doubled in size from 2006. My primary care physician (Lee Golusinski, MD) & Dr. Grossman were as baffled as I was because—at that time in early June—I was still pretty asymptomatic and did have some weird things showing up in my routine labs, but they attributed those weird things (high CRP, homocysteine, mildly low red blood cells, high white blood cells) to the recent candida infection. Made sense.

So none of us really thought anything of this giant mass, but to be extra cautious, I was referred to a thoracic surgeon (John Moore, MD). Dr. Moore took one look at me and my healthy young self and thought the same thing the rest of us did. He said “it was most likely not anything bad, like cancer to be worried about,” but did recommend a battery of tests to get done so we could prove it was nothing bad(read more about those below). He also recommended we remove it because it was infringing on valuable real estate in my lung and mediastinum.

At that time (now late June 2015) I was starting to feel weak and sick, but still capable of doing most of my normal stuff. After one of the tests, a minimally invasive surgery to remove neck/chest region lymph nodes and take samples from inside my lung, I was down for the count. I didn’t bounce back as we all expected me to. They said I’d be good to go in 3-4 days. I tried to work for a week but felt horrible. Against my better judgment and at the urging of a very valued colleague, I threw in the towel on July 24, 2015. That was my last day of work. I thought I was going to be fine with a little rest. I got progressively sicker, skinnier, more febrile, and weaker even though I was resting, hydrating, taking Tylenol 24/7 and eating like a horse. I knew in my gut that something was really wrong.

Chalk one up for Intuition knowing what it was talking about. Fast forward to August 12, and I was taken by ambulance to the Northside ER because I had collapsed in my guest bedroom one morning. I was very anemic and was admitted for 2 reasons: we had not yet figured out what the mass was, and we could not figure out why I was so anemic and having such bad fevers. I had a million more tests done—no, I was not bleeding internally (one cause of anemia). No, I did not have a hidden heart condition that caused me to faint. No, I did not have a blood clot. Yes, my liver was normal. No, I did not have any weird infectious diseases. WTF was wrong with me? Nobody wanted to give me blood transfusions. I was worried they were going to send me home without addressing the anemia.

In walked Dr. Gina D’Amato (Hematology/Oncology). Dr. D’Amato had been consulted from my ER visit 3 days before to investigate the anemia. She started to look through my chart and noted that I had the battery of tests run and one biopsy which had been ruled normal was not, in fact normal. She had taken a few days to make some calls to expert colleagues around the country and to confirm it was a very rare form of sarcoma. Meanwhile she also consulted with all the physicians I had been seeing in the hospital, including my surgeon, to inform them exactly what we were dealing with. Dr. D’Amato, being a sarcoma expert (which, by the way, is a rare breed of oncologist in itself since sarcoma is so rare), moved on from investigating and treating just my anemia and my fevers to attributing the anemia and fevers to the tumor itself. So after 3 days of endless tests and being told over and over again I was not a candidate for a blood transfusion, 1.5 months of feeling generally lousy, Dr. D’Amato came in at the 11th hour (for real, it was 7:30 PM at night-this is twilight hour in a hospital) and sat with me for an hour explaining how all of this stuff went together—the infection, the fevers, the anemia, and “the mass” which was officially a sarcoma. There was no way I was going to recover from the anemia or the fevers without treating the sarcoma. But I couldn’t treat the sarcoma (whose only cure is through surgery) without fixing the anemia and my immune system to make me stronger for surgery. She ordered 2 immediate blood transfusions, iron infusions, a whole host of cough and pain medicines to help my relentless cough, and lots of fever management protocols to help with the fever.

She was just the lifesaver I needed when it seemed nobody else could figure out what was going on. Evidently this is a common trend in sarcoma patients. It’s a sneaky kind of cancer that very few providers in the world really understand, and it likes to pose as a lot of different things and/or fly under the radar before it decides to totally kick you in the tail. There are so many subtypes—and between and within those subtypes—they all behave very differently. So I truly attribute it to divine intervention that I fainted and ended up on her caseload that fateful Wednesday. She says I would have eventually landed in her lap, but I don’t know that I believe that.

Whew. That was a long answer. But I promise you it is the cliff notes version. Did you forget the question? Because I did. Here you go: “How did you find out about this?” A friend recently asked me “Didn’t it drive YOU crazy not knowing what is wrong with you, given that you are so curious and such a problem solver with your own patients?” Yes, yes it did drive me crazy. Very crazy.

 Did you have a biopsy?

Yes–several. Including the surgery on July 15 (mediastinoscopy & bronchoscopy), I also had a CT-guided fine needle biopsy August 4 which called it a “myofibroblastic proliferation of inflammatory cells” (Say that 5 times fast). To the pathologist and my surgeon, this didn’t seem alarming. It wasn’t until Dr. D’Amato got her hands on it about a week later that she determined it was IMT/sarcoma. Again—hooray for fainting!

 Did you have scans done?

Yes—several. CT scan in June, PET scan, CT Angiogram, V/Q scan in July. CT-guided biopsy in August. Ultrasound of my abdomen. Echocardiogram. CT scan in September. CT Scan in December…A million chest x-rays in between. I’m sure I’ve left out some. I’m basically perpetually glowing/radioactive at this point.

What did you name your tumor and why?

I’ve always taught my patients that sometimes it’s a good thing to personify your disease and separate yourself from it so it doesn’t become something that is “your fault “and so you can remain objective about it. So, I lovingly (toward myself, not toward the tumor) named my tumor Benedict—perhaps one of history’s most infamous traitors. You can find stories of Benedict behind the hashtag #takethatbenedict on pretty much any social media outlet out there. He was given a metaphorical lump of coal by my friend Kendall for Christmas because he was a bad boy this year. I also received a pair of boxing gloves (thank you Cashdan family!) so I can keep beating the crap out of him. And I’ve pretty much embraced the persona of WonderWoman (complete with lots of superhero swag given to me by many friends and family members) so that Benedict can get squashed. And boy, he’s getting squashed alright.

What are you doing to annihilate (treat) Benedict?

I am taking a genetically-targeted oral chemotherapy drug called Xalkori (generic: Crizotinib). Basically the cells from my biopsy were sent to a lab for genetic testing. Why genetic testing? Because cancer is a mutation that occurs in a cell’s gene that causes the cell to grow uncontrollably. So they looked to see if I had a certain mutation that could potentially respond to the crizotinib. Evidently only 50% of IMT’s have the mutation. Turns out the mutation WAS present in my tumor. So, I take the pill twice a day and have been continuously taking it since September 11. It was patented in 2012 by a scientist in Boston, meaning it is relatively new and there is very little research on it other than what occurred in the clinical trials. It is a medication used often in what is called “non small cell lung cancer” (NSCLC) with the mutation (called an ALK+ gene) but evidently in IMT’s there is a chance for the same mutation. What’s cooler is when we figured out I would potentially respond to the drug. Keep reading…

 Wait, weren’t you supposed to have surgery? I remember reading that on facebook!

Indeed. I was scheduled for surgery initially on August 26, 2015. I was very sick at the time (and very anemic) and because Benedict was so large, my surgeon was going to have to do a very invasive procedure, possibly breaking and/or removing multiple ribs, taking out a huge portion of my lung, and leaving me with a very painful and extended recovery process. Daunting, let me tell you. And let’s just say that even Wonder Woman was not feeling very motivated about this. This was the only time in my journey I felt very victimized and scared. But…as luck/divine intervention would have it, we got the results of Benedict’s genetic testing back just a day or so before the surgery. My surgeon and oncologist consulted with specialists all over the country to decide what to do, and fortunately they made the bold decision to try to see if I would respond to the drug, possibly shrink the tumor, and then potentially give me a less invasive surgery later on.

Why do you still have to have surgery? You’ve made such good progress! Can’t the chemo just shrink it completely?

Again, I am not an oncologist. And I’m totally with you! As much as I would LOVE to avoid surgery and be very passive aggressive with Benedict via chemical warfare, it is my understanding that at some point he will slowly stop responding to the medication and/or he will “stabilize.” What this means is via the CT scans I am getting every 3 months, there will come a time that Benedict’s size will be roughly the same between 2 consecutive scans. At that point it will be time to remove him. From what I hear, the only cure for sarcomas is to remove them, otherwise we risk microscopic sarcoma cells leaking out into other body regions. And while I have not read a single thing about this online (Dr. Google is never a trusted source), I can’t imagine this would be a good thing.

What does the research say?

There really isn’t a lot of research on this tumor or the medication. I haven’t checked Google but I have looked through PubMed since I have library access through Emory. Read: this is a scholarly database where I can read actual research articles. Basically, this tumor is most common in childhood/adolescence (reminder: we first learned about it when I was at least 17…but who knows, it could have been lurking before that)—so, like most sarcomas, I, too, have a childhood cancer. That’s right, I really am a #kidatheart. Or a #kidatlung. Ha! I’m hilarious!

What we also know is that IMT can take years, decades, or even a lifetime to rear its ugly head and be symptomatic. And in some people it never does. In other people it’s incredibly aggressive and immediately life threatening. It can occur in any part of the body, but it is common in the lung in younger patients. I believe it is also common in the lower GI tract, uterus, and/or bladder but I may be quoting the research incorrectly there. See what I mean about sarcomas never behaving the same within or between different types of sarcoma? It’s confusing!

As for the medication-to my knowledge it hasn’t be specifically studied in IMT. But—it has been studied in non-small cell lung cancer (NSCLC) with the same mutation as my tumor. It takes a savvy sarcoma doctor to know that IMT’s may have the same mutation. Hence why, again, we’re really glad I fainted on August 12.

 How come nobody did anything about this when you were younger? Aren’t you mad about that?

This has been discussed among my medical team and I have also discussed it privately with several friends who are physicians. It comes down to the fact that at the time I was going through this, every decision that was made was the right decision given the information and evidence presented to my specialists at the time. And the way that these types of lung lesions were treated at the time (in the early 2000’s) was watch and wait. In fact, it still is watch and wait for the most part—especially when the lesion does not appear to cause any apparent danger, does not appear to be growing, and the patient has no symptoms. For me, between my two specialist consults over the course of 5 years in the early 2000’s, comparison scans showed that young Benedict did not appear to be growing, nor was he causing me any symptoms that we could discern. So no, I’m not mad. And I can’t change the past so there is truly no benefit in wasting my healing energy on that. Hindsight is always 20/20 but I really think that this was meant to happen to me now and I’m grateful it did and that I have the team that I have! Just think-if I had the mass biopsied and/or removed in late high school, the surgery could have potentially jeopardized my swimming career to the extent that I would have had NO chance of swimming in college or even going to Duke. No thanks. I’ll take the course the way it has been 🙂

How is it that you lived so long with cancer and it didn’t affect you?

Nobody really knows the answer to this. We can make all sorts of conjectures but they will be just that—theories and conjectures. I have plenty of theories but there’s really no way to prove if any of them are true. I’ve read a lot of scholarly works on it too (because you know, I have spare time these days) and there really is no way to pinpoint what I did right or what I did wrong along the way. Or it may just be that “shit happens” and it has nothing to do with anything anyone did. I’m cool with that reason, too.

 What are the chances it could come back?

We don’t know. But I’m definitely creating a number of lifestyle changes that have been proven in lots of scientific research to help prevent a recurrence (or initial occurrence) of cancer. Now, that applies to cancer in general or perhaps other types of cancers—and since this tumor or any other type of tumors I could ever get may be drastically different among themselves or from those studied, who knows if it will work. If you want to know what I’m talking about in more detail or want to lead a more “anticancer” type of life, check out the book Anticancer: A new way of life by David Servan-Schreiber, MD. It is written not only for those with cancer, but also for anyone wanting to prevent it from happening. It’s really a fabulous read.

At what hospital are you being treated?

Northside Hospital in Atlanta

Why not Emory? 

Because that’s not where my oncologist and surgeon practice. And I like them. But Emory’s cool too. I hear really great PTs graduate from there.

 Who is your oncologist?

Gina D’Amato MD

 Who is your surgeon?

John Moore, MD

 Side note: Both Dr. D’Amato and Dr. Moore have been repeatedly voted in Atlanta Magazine’s Top Doctors In Atlanta ranks year after year. This is a survey among all of Atlanta’s physicians, not based on the public. What’s cooler is I found that out after I had seen them. So I just thought I’d brag a little.

 When will your surgery be?

We don’t know. It depends on how much my tumor shrinks and/or when it stops shrinking.

What type of surgery will it be?

We don’t know. It depends on how much my tumor shrinks and/or when it stops shrinking.

Originally I was supposed to have a thoracotomy with or without upper lob and/or chest wall resection (super invasive, super ouch). Now we’re gambling on the tumor shrinking enough to have the VATS procedure (minimally invasive, but still painful). I’ll let you do the Googling there.

How long will you be out of commission after surgery?

I’ve been told 3-5 days in the hospital. Then at home: it depends on which procedure I have. I’ve been quoted anywhere from 6-8 weeks. The PT in me knows this really means 12-16 weeks. PSA: If a surgeon quotes you a period of time of recovery after surgery and you have a very active job or hobby, a good rule of thumb is to double it!

 Have you had to see a million specialists?

You betcha. In fact, I recently made a list of all the specialists I’ve seen this year for any number of things. Ready for it? Breast Surgery, Family Practice, ENT, Gastroenterology, Ortho/Sports Medicine, Functional/Integrative Medicine, Allergy & Immunology, Radiology, Interventional Radiology, Thoracic Surgery, Anesthesiology, Pulmonology, Emergency, Infectious Disease, Hematology/Oncology, Pathology, Internal Medicine, Cardiology, Ophthalmology, Ophthalmic Surgery/Retina Specialist, Gynecology, Psychology/Coaching, Nutrition, Physical Therapy, Massage Therapy, Acupuncture, Dentistry

As you can tell, the list of specialists I haven’t seen is a bit shorter! I’m not proud of this–but I do have an AMAZING team! Need a referral to a great specialist? Just ask.

Have you considered going to a specialized cancer center for a second opinion?

No. With a sarcoma it is important to be seen by a sarcoma specialist (check!) who either works with or is networked with other sarcoma specialists (check!). She’s also involved on the Board of Directors the Sarcoma Alliance, which, if you missed my facebook or instagram post about it, has awesome green bracelets you can buy to support research and funding for this rare cancer. She lectures about sarcoma. So yeah, she knows her schtuff. And she’s a total freaking nerd and has a geek out every time I see her because I’m making awesome progress. And she draws haphazard pictures to show me what she’s talking about. I don’t know anyone else who does that for their patients. 😉

 Who is the holistic doctor you’ve been seeing?

Stephanie Grossman, MD. She’s also a rock star. Shameless endorsement—see www.atlantaholisticmedicine.com. In a nutshell, she is one of few practitioners in Atlanta in a very grassroots but growing field of traditional medical practitioners who are working to turn the Titanic in many ways of western medical care. It’s called functional or integrative medicine. They don’t just treat the disease—but figure out the cause of the disease—whether it’s a genetic, environmental (nature vs. nurture), dietary, or behavioral reason, or because you’re doing everything right but for whatever reason, the way your body systems function together just doesn’t work for you. They truly take care of mind, body, and spirit and make sure all of your ducks are in a row. They still do “normal” doctor stuff too—it’s truly the best of both worlds. GO THERE. It’s worth every penny.

 Are you feeling ok?

YES! I have recovered from the terrible anemia, weight loss, fevers, rib fractures/subluxations from coughing (the WORST!), foot swelling, face swelling, and other crap I was going through and have fortunately forgotten about. In fact, within 24 hours of taking my chemo drug, I started to see these terrible things start to wane away. It was nothing short of amazing. So we know Benedict was to blame for those symptoms. It took a few months for my energy to return and for those symptoms to totally wash away, but they did. I went through some additional bumps and episodes of metabolic disturbance: skin changes, hair loss, liver freak out, amennorhea, and nausea and vomiting when I was getting onto the drug and also recovering from all of the stress my body had been under for several months. But all of that has normalized too–and probably with a little help from my friends Diet and Lifestyle.

 What side effects have you experienced from the medication?

Other than some initial nausea and water retention issues which have faded away, the only issue that remains is funky vision changes. I see trails on moving objects when I move quickly from a dark to light environment. I’ve seen 2 retina specialists and had every test done known to man. To you opthalmologists out there—you use some really weird but cool stuff! And you have really got to work on your office wait times! They can’t find anything wrong with me—but the 2nd one I saw did note that the vision changes were “common” in the clinical trials for my medications and reversed when the patients discontinued the drug. So there ya go.

 Will your hair fall out?

No, other than when my thyroid had a panic attack for about 3 months and caused my hair to fall out, it will not fall out. It freaked out because of all the acute illness stress my body was under. But it’s back to normal. Thank God! That hair loss was seriously demoralizing especially because I was told I wouldn’t lose any hair. My sink and bathtub drains are also really glad that is over.

What is the cause of your cancer?

If you can provide and prove a credible answer to that I’ll name my firstborn after you.

 Does anyone in your family have this or other types of cancer?

Nope. Not that we know of.

Will this affect your ability to have children?

I sure hope not. There probably isn’t a lot of data on the long term effects of Crizotinib since it was only patented in 2012. But as far as we know, this kind of chemotherapy should not affect fertility. The lifestyle changes I’m making should only help fertility anyway. We’ll cross that bridge when the time comes.

Are you working?

No. I went on medical leave/disability back in July. Still riding that wave.

When are you going back to work?

I made the tough decision to leave my job back in November. It was time for me to focus most on bettering myself in all facets of wellness. Also, because it is so difficult to know exactly when I will be able to “get back on the horse” in full swing because my surgery date and recovery stuff is really unpredictable, I thought it would be best to move on. The good news is I feel good enough to start picking up some work soon. I have many exciting things on the horizon to keep me busy and motivated in the interim! Stay tuned!!!!

 Why are you thinking of working?

As much as I’d love to hang out all day, there’s no sense in not letting “life go on” so to speak. It could be 3 months or 2 years before I have surgery. I feel good and it’s time to give back to the world that has been oh-so-giving to me during this crazy time in my life. Can’t wait! So excited.

 Are you teaching?

Unfortunately, my co-instructor and I cancelled our Pilates elective at Emory this semester because it was set to begin and run right at the heyday of Benedict’s attempt to take over my life. Hopefully we’ll be back at it next year and we have some fun ideas for how to expand it beyond PT students! Stay tuned.

 Are you still planning to speak at CSM?

YES! For those non-PTs out there, this is an annual big conference of the American Physical Therapy Association. I was invited to speak along with 2 of my colleagues, Mandy and Christy, and I will also be presenting a poster for the research I did last year at Emory with some rock star PT students (now PT grads) and my friend and colleague Kate. I have really been looking forward to the trip—it’s a culmination of a lot of hard work and hard-earned honor. I got to speak at the conference last year and it was such a wonderful learning and networking experience. I wouldn’t trade it! Plus what’s not to love about southern California in February? The coolest part is that I am going to be attending a Sarcoma Alliance event near Long Beach while I’m there. It just so happened that the event coincides with the conference week. I love combining two amazing causes!

How has this changed or affected how you treat or deal with your own patients?

That is an entire blog post for another day (stay tuned!). Let’s just say—more empathy, compassion, creativity, out-of-the-box thinking and patience than I already had.

 Is this related to the other illness (candida) you had earlier this year or any other illnesses you’ve had in the past?

Who knows? Probably. It’s an inflammatory condition and many of the conditions I’ve had in the past are attributable to uncontrolled inflammation and sensitivities. I have a great team on my hands who has some theories, but we’ll never know for sure.

 Are you still on that crazy diet?

Not the candida diet, per se. It’s similar but now called the anticancer diet. And it’s not as stressful since I’ve pretty much done it before. Basically it’s a plant-based paleo diet with emphasis on low glycemic load (low carb, grain, and sugar), no gluten, no dairy, and watching my food allergies and sensitivities. And most importantly—no alcohol. It’s contraindicated to take with my medication. Although Dr Grossman did recommend the benefits of resveratrol in red wine for anti-cancer benefits. Stay tuned for the red wine festival we’ll be having once I’m tumor and medication free.

 Would you like to have a glass of wine?

You have no idea.

 Are you allowed to exercise?

Yes! I exercise almost daily. I’m mainly walking, doing Pilates and Redcord, stretching, and doing some home exercise stuff. I’m peer pressuring my dear friend and clone Alexis to peer pressure me to get into the pool soon. See what I did there?

 Are you allowed to travel?

Yes! My white blood cells are on the border of normal-low so I just have to be a little cautious. I just fought off a crappy cold for about 3 weeks and because of it, postponed a trip to Dallas to see my nieces. I went to Dallas in November and it was just dandy! I’ll go to LA in February. We have made some weekend trips to our cabin in Blue Ridge, GA. Lovely!

 Is there anything you cannot do?

Is there anything Wonder Woman or Leslie Knope cannot do? I didn’t think so.

 Are/were you scared/sad/angry/frustrated?

I’d be lying if I said at any point I wasn’t any number of emotions. But for the most part, I really think this experience has lifted the veil from my eyes that I didn’t even know it was there. Underneath it lies a really amazing, vibrant spirit and outlook on life that I didn’t know was there. So yeah…#sorrynotsorry for the battery of inspirational social media posts.

How is Daniel handling all of this?

He’s also had his moments of ups and downs. Who wouldn’t? But he’s been nothing but an amazing rock and stand-in superhero. Even Wonder Woman has to take some time off every now and then.

Do you need anything?

THANK YOU for asking! I need lots of things and the good news is, they’re all FREE: good thoughts, good vibes, prayers, well wishes, hugs (virtual hugs are great), an endless supply of Parks and Rec (if you follow me on Instagram, you know that I just realized there’s a new season coming out on Netflix in 2 weeks!!! OHMYGAAASH!). Other than that, I have everything else I could ever need and I’m eternally grateful for all of the love and support I have gotten thus far. It truly takes a village (and not just the village of specialists I listed above).  I couldn’t do this without the rest of such an amazing support system. I’ve kept every single card I’ve received, much to the chagrin of my office bookshelf that is overflowing with paper cards. Call me a hoarder if you’d like. But it’s really nice to look at that huge stack–it #litrally (yeah Chris Traiger!) builds me up every time I see it. So if you haven’t received a formal thank you from me, chalk it up to #chemobrain and consider this your huge, enormous, amazing thank you!!! Here’s to 2016 totally rocking our faces off!

Living it up and settling into 2016 in Chapter 22

One thought on “My year with Benedict: The Cliff Notes Version

  1. Thank you so much, Julie, for your “cliff notes.” Though I have attempted to understand and follow since I heard of your illness last Fall, I now have a far better comprehension! You are such an amazing writer and communicator!!
    I am sooo happy that you are feeling stronger and that Benedict is smaller and weaker!!! In addition to your fantastic medical and family support, your positive outlook has undoubtedly also played a major role in your progress. I continue to send you good vibes, thoughts, prayers, wishes, and virtual hugs!!!
    Ada Parker Shields (Salem classmate of your dear mom’s)

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