Chapter 14: Benedict’s Extended Stay Motel

No, I’m not blogging from surgery. As it turns out, I’m not having surgery today. Benedict has now checked in to his extended stay motel.

Yeah, it was news to me too! Yesterday (August 25) morning before 10 AM, I got a call from both Dr. D’Amato (oncology) and Dr. Moore (surgeon) telling me we were cancelling surgery today (August 26).

Wait. What? All this waiting and buildup and you’re throwing me out of your operating room?

So it turns out that some smart pathologists did extra genetic testing on my tumor pathology. What it showed was that the tumor has a gene mutation that will likely respond to a new oral medication to help shrink it and kill the sarcoma cells. To clarify-this is not chemotherapy. It’s a specific sarcoma-buster so it won’t target other rapidly-dividing cells. What this means is my hair won’t fall out because of the drug. It may fall out for other reasons though—like me running out of patience these days!

Because sarcomas are rare, and my particular sarcoma is even more rare (I’m the 1% of 1%), there are not many clinical trials and research on sarcoma or the specific drug, Crizotinib. What this means is the cancer research world is not totally sure of the side effects of the medication, but so far I’ve been told I may have nausea, vomiting, diarrhea, and immunosuppression. Sounds lovely. But If it shrinks a tumor, I will take it.

So let’s get back to that whole surgery thing. Turns out my oncologist presented my case to other sarcoma experts in Texas this weekend, and my surgeon presented my case to a thoracic oncology conference yesterday morning. All the smart experts agreed it would be much wiser to try and shrink the tumor before taking it out. Why?

Well, it turns out Benedict is 10 cm and growing. In case you haven’t seen a ribcage lately—the spaces between ribs are very narrow. In order to remove Benedict, it was likely that my surgeon was going to have to not only use a spreader to open up that space, but I could have fractured ribs because of it. Or he may have had to do a chest wall resection and remove a few ribs. What’s the big deal? I’ve got 24! Wrong. Ribs are super important for a lot of things like–oh I don’t know—breathing, spinal and thorax stability, being able to twist/bend the spine and body, swim, use a shoulder…you know—quasi important activities.

We don’t know for sure, but Dr. Moore was also likely going to have to remove a very large portion of my lung. Wonder Woman can certainly live without a lung, but it’s not an ideal situation for superheroing (it’s a verb in case you were wondering).

You’ve probably done the math by now to realize that if my tumor can shrink, maybe—JUST MAYBE—I’ll be able to hang on to a rib or two. Crizotinib has been shown to shrink OR stop growth in my particular type of tumor in 50-80% of patients in one clinical study, so I’d say the odds aren’t bad. I already had a talk with Benedict and he agreed to shrink for me. So rest assured, all will be jussssst fine.

What does this mean for me in the meantime? We have to wait on my insurance to approve the medication since it is still fairly new and my tumor is still fairly rare. I’ve been told they may deny the medication, but my awesome oncology team is going to flex their muscles and use their powers of persuasion to appeal that for me. I hope that works out, because Aetna (my insurance) REALLY hates it when I get on the phone with them, because I always end up getting what I want.

Hopefully that will get approved by next week and I can begin the tumor shrinking adventure. I’m staying at my parents’ house (was part of the plan pre-and post-surgery) for extra pampering and nursing care from Mom and Dad while Daniel works and takes care of everything else we need to take care of. I will continue to go between both houses and rest as much as possible.

We still have a long road ahead. I’m receiving weekly IV infusions of iron (Infed) at the oncology office to help boost my red blood cells. I’m still super exhausted and do not have much stamina thanks to anemia, so it’s hard to build strength. Hopefully that will start to improve and I can build some strength for surgery which will be in a few months. I’m also still plagued (literally) by “tumor fever” which is very unpleasant. And I’m getting the normal late August sinus junk that happens to folks in Atlanta. But perhaps most annoyingly-I am 99.9% positive I have fractured one of my ribs from all the coughing I’ve been doing. So that’s been pretty uncomfortable. Needless to say—there are lots of irons in the fire here and I am SO thankful I can get these under control before surgery.

I’m told I’ll be on the Crizotinib for a few months and then we will revisit surgery once the Benedict shrinks. I’ll get periodic CT scans to monitor Benedict’s shrinkage in the meantime.

Otherwise everything is going well. I’ve fully transitioned back into a normal diet and I couldn’t be more glad and relaxed. A few things irritate me but I’m working on figuring out what works well and what doesn’t. I’ve developed quite the aversion to a lot of the “staples” I’d been eating on the Candida diet. Sweet potatoes are repulsive to me these days, and I’m not too enthused about things like avocado or coconut either. I’ve interestingly been very disinterested in sweets. I’ve heard that will happen when you eliminate sugar. Some of it is psychological too—I just don’t want to go back to that lifestyle. I know it’s clean and really good for me, but it reminds me a lot of a time of struggle and pain. PLUS, I’ve gained a pound or two since I abandoned the diet. Only 8ish pounds to go!

I cannot thank everyone enough for the prayers, well wishes, cards, games, food, and general good will. It is so humbling and warming. I was terrified 2 days ago when surgery was creeping closer. Daniel observed that I was very down. I just didn’t feel good about going into surgery with rib pain, sinus issues, and anemia. I felt like it just wasn’t a good idea and that I was defeated. I kept thinking “they’re telling me this surgery is going to cause so much pain and dysfunction, and I already feel terrible. Oh well, I guess the only way to go is down…” It was very negative and not typical of the way I think and feel. But reading posts and encouragement from all of you really did lift me up. I thought “If THEY can be hopeful, then so can I.”

I believe that all of your warm wishes and prayers were answered when we received the call from the surgeon and oncologist yesterday to cancel the surgery and change the plan (yet again!). My family and I were thrilled with a new potentially safer and less invasive treatment option, and I look forward to continuing the quest to squash Benedict.

Waiting on chemo…read about it in Chapter 15...

7 thoughts on “Chapter 14: Benedict’s Extended Stay Motel

  1. Hi Julie, I am your mom’s stylist. I feel as if I’ve known you for years. Thru your posts, I feel like I know you even better. They are funny and uplifting. I e shared them with my Facebook friends and we’ve all decided that you are going to kick Benedict’s asa. We are all pulling for you and praying heartily. Stay strong! Love Nikki. P.S. if you need a haircut just let me know

  2. Julie, I am a friend of your mom’s from Moultrie. I want you to know that I have you in my thoughts and in my heart. You have a wonderful support group worth your family. If there is anything I can do for you or for them I am happy to help. We will keep sending out thoughts for Benedict to go on a fast diet so you can get him out of town. Take care. Becky Willis Boyette.

  3. Julie, I love reading your story. You know how to write the story in such an interesting and amusing way! I am glad to know that Benedict is somehow on the “chopping block.” I am also glad to hear that things are looking up. Please let me know if you need anything or would like a visitor!!

  4. Julie,
    So glad to hear about this new treatment possibility. That is a true answer to prayers. I will pray for insurance coverage and for “Benedict” to respond (as he promised!). Your sense of humor is still terrific and your blog posts are awesome and letting us know how you are doing and how to pray. Keep hanging in there and trusting that God is in control.
    Kathy Lewis

  5. Hi Julie! I went to Salem with your sweet mother. I am sending you much love, prayers and good thoughts from NC!! You are outstanding and will endure!!
    XO Ada Shields

  6. Hey Julie! Ann Lam here checking in from a brief Internet moment in Juneau, Alaska. They love dogs up here–there is one sitting on a barstool next to its owner a few feet away. I am so very glad you are putting off the surgery, and that your team has discovered a drug that could make the surgery so much easier. I am also happy to hear that you have negotiated a de-escalation agreement with Benedict. Let us all know what your favorite culinary treats are these days, and we will keep you supplied!

  7. hey Julie – I’ve been thinking about you and miss our weekly visits. But so glad to hear that you are dodging surgery!!

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