Chapter 13: Crazy Week Part 2: Benedict’s true colors

Remember that little girl I told you about early in this blog series—the one who was fascinated by hospitals and knew she wanted to work in medicine some day? Well, that little girl had never been admitted to the hospital, so she got a kick out of the adventure for about 30 15 minutes.

I did have a kick ass nurse and patient care tech to begin with, so that was helpful. Kathleen the nurse had just graduated from UNC . All anti-Tarheel jokes and comments aside, I will gratefully admit this means she was really smart! And Stanford “Stan” the tech was just hilarious and very thorough. If you’re going to stay in the hospital, you need to ensure you have an awesome nursing team.

I was quickly whisked off to receive every OTHER test and scan in the book. You know—just a few more in addition to all the ones I’d already had. Echocardiogram, EKG, Upper abdominal ultrasound. A million more blood labs. And mind you, it was now 1 PM and I was still fasting. Hanger definitely set in.

On the record-I do not like echocardiograms. I say that like I have experience. Sad thing is, I do. I had one in 2009 too. Really? Do you really think I can hold my breath that long? Did you KNOW I have a giant Benedict in my lung taking all my oxygen away already? Oh and guess what, I had to do the same thing for the upper abdominal ultrasound. They ran that test because I had a slightly elevated liver protein. And the tests were back to back. Whew. Tiring. Good news is my heart and liver were peachy clean. They put me on telemetry (live heart monitoring) through my whole stay to see if I had some type of arrythmia leading to fainting spells. That came back normal too.

The hospitalist spent a long time with me getting the entire story. I ended up seeing my surgeon’s PA on the first day, in addition to a FABULOUS infectious disease physician. Dr. Blass is the man—and if you ever need an ID physician—please let me know! He was extremely thorough and informative and decided to run more blood labs and cultures, including some special ones that had to be sent to the Mayo Clinic. And he was very impressed that Dr. Grossman had been so thorough in testing for lots of random, rare, infectious things already. See? Told you she was an awesome physician. Best of all-he was funny and very personable, and spent about 25 minutes at my bedside making me feel comfortable and confident. And he had the best nerdy intro line of all “I’m infectious disease. We are the “Sherlock Holmes” of Medicine and also Pest Control for People.” I don’t know why, but I found that so funny. But seriously-he really did sit there and use his brain. I could hear the wheels turning.

Hospital food? Eh. I busted into dairy by having pizza when they finally cleared me to eat. AMAZING. My friends Jill and Julia stopped by to bring some cheer. All in all, the first day was a whirlwind. No answers, and by bedtime I’d had no time to decompress. So I didn’t sleep well (not that anyone sleeps well in the hospital). Bummer.

The next morning, we were up with the sun as the lab lady came to steal more blood. You know I’m low on blood, yet you people keep taking mine…She was quickly followed at 6:15 AM by my surgeon. It was very comforting to see him, and I knew he stopped in to see me before all of his surgeries that morning. He said he’d been wracking his brain and talking to a million people to try and figure out what could be causing all my symptoms. He had consulted with the same hematologist I was supposed to see: Dr. D’Amato, and she was going to come see me (Sweet! Saves me an office visit!). He also told me that in talking with her, they determined that my crazy weird “myofibroblastic proliferation of inflammatory cells” diagnosis may actually indicate a rare type of cancer called a sarcoma. But we would not know that for sure until after the surgery anyway.

OH SHIT. This is the first time anyone has mentioned cancer.

That was no fun to discuss, so we quickly moved on to the surgery. He told me he would have to do a thoracotomy—ie the most painful surgery a human can have—meaning a huge incision along my ribs, opening up my ribs, and removing the tumor and/or part of my lung through the huge incision. Yowza. This is just what I had prayed would not have to happen. I had hoped that Dr. Moore would be able to do his minimally invasive VATS technique. He explained he could not do that because my tumor was 10 cm long/wide, and he could not pull it through a 4 cm hole in the VATS technique. OK OK, geometry doesn’t lie. You win, Dr. Moore.

Lastly, he said that he would love to do the surgery ASAP, however he was going out of town next week and did not want anyone else but himself caring for me post-operatively. You have to appreciate a surgeon who “owns” his own patients. So we pretty much concluded I’d be waiting 2 weeks for surgery.

So all of that wasn’t exactly what I wanted to hear at 6:15 in the morning, but at least it was progress and a plan.

The rest of day 2 was fairly uneventful. The hospitalist cleared me to walk laps in the hallway with a supervisor. No gait belt and no PT though J I was overjoyed at this news because oh-by-the-way my aching back had had ENOUGH of the hospital bed. It was really my biggest concern at the time.

I ate 2 breakfasts, 2 lunches, and 2 dinners thanks to my food elves (Daniel and Mom and Dad!) and the fairly decent hospital offerings. At least I had an appetite. And gluten was ohsogood. And because of my weight loss the dietician gave me special ice cream called Magic Cup. Chocolate ice cream: 4 oz cup with 290 calories and 9 g protein. Amazing. I’m ordering it for home.

According to Dr. Blass, all my blood cultures were normal. Yay for no MRSA, Ebola, Chikungunya, Bird Flu, Hanta Virus, you name it…He believed strongly that the tumor was responsible for the fevers. He called it “Tumor Fever.” So that was validating. But there was still no answer for the anemia.

That evening after dinner, just when I thought we were heading into a fairly calm night’s sleep, we had a knock on the door. It was 6:45! Who could possibly be visiting? (By the way-in the hospital dinner is served at 5 PM. We were on the senior citizen schedule!)

In walks Gina D’Amato, MD. Just who we didn’t know we’d been waiting for. Although you readers know I’d been alluding to her name throughout this post.

So get this. I was supposed to see Dr. D’Amato in the clinic, but ended up in the hospital instead. I had been told she would come see me by mutiple people, but had forgotten about her by dinnertime. So she just happened to be checking up with the ED physician on my case because she hadn’t heard from me. He told her a little about me, and she asked to look deeper into my case. Good thing she did! Turns out one of her colleagues was going to consult with me because he/she could see me sooner than her, so she convinced them to let her take on the case. Why would someone fight over me (Other than my ravishing good looks and general awesomeness)? Well it turns out she has heard of myofibroblastic proliferation of inflammatory cells.

Wait really? Because I searched PubMed high and low and let me tell you—it seemed like nobody in the world had really heard of it.

So the good news is she had heard of it. The bad news is that “myofibroblastic proliferation of inflammatory cells” is a really, really, complicated and long way of saying “soft tissue tumor” when the pathologist really doesn’t know how else to describe it. “Soft tissue tumor” is also a long way of saying “sarcoma.”

And oh-by-the-way, sarcoma means cancer.

Yep, that 6-letter C-word had just been thrust into my vocabulary. Benedict is a cancer.

People always wonder how it feels to be told you have cancer. To be honest, I didn’t feel any different. If anything, it lit a fire under me and made me super motivated. The good news is that Dr. D’Amato believes that it is a fairly non-aggressive form of sarcoma with a very good prognosis, this is of course pending the pathology results after surgery. The good news is also that the way to treat this type of sarcoma is by surgical removal. SO—really nothing has changed in the plan. Dr. Moore will hack away at the side of my ribcage (poor muscles!) and take out Benedict, and we can just pray that he gets all of Benedict, clear margins, and the rest is history after that.

Oh, and she completely blamed the anemia on the vampire we know as Benedict. He’s sucking away all my blood and making me anemic.

Dr. D’Amato had done her homework. She had consulted with every physician I’d seen in the hospital and was ready to consult with some colleagues across the country who also specialize in sarcoma. She also reminded me of me as a clinician—she was funny, appropriately sarcastic, extremely passionate and thorough, used a lot of great metaphors in explaining things to me, and even drew really terrible pictures of cancer cells to depict what we were dealing with. It reminded me of the terrible pictures I draw of spines or other body parts/processes to tell patients about their pain or injuries. Oh, and she told me to not even consider reading about this on the internet—another line that I, too, use on patients.

She seemed very confident that this was treatable. Once she left, Daniel and I were both shocked at how good we felt. Not quite what I would expect after receiving a cancer diagnosis. But you know what? I’ve been living in misery for months now and feeling like I’m spiraling out of control. No doctor has been able to explain it. If nothing else—getting this diagnosis has been very validating. And humbling. I’m not going to say I’m happy about it. It also hasn’t fully sunk in yet. I keep having moments of “oh shit! Those Northside Cancer commercials you hear about—I’m now one of those patients!”

Dr. D’Amato did something else great for me. She got aggressive about getting me better and stronger for surgery. Every other physician in the hospital did not want to do a blood transfusion, but she—the hematologist—felt it was extremely appropriate. She also ordered IV iron and said she wanted to aggressively manage my back pain (and any other pain) and my coughing so that my body would not be so stressed out. So, that night I had 2 blood transfusions and received IV iron the next morning. After that-my blood counts were much better and they sent me home. Hallelujah! So not only was I feeling pumped up and juiced up with someone else’s hemoglobin, but we also knew we’d found a quarterback in Dr. D’Amato.

So maybe fainting and losing conscioiusness was a blessing in disguise.

I got home around noon on Friday and ate another delicious ChickFila meal, then immediately passed out for 19 hours. I only woke up to eat a delicious dinner of Figo Pasta and went right back to sleep.

Overall, I’m in a hopeful and motivated space. There’s no time and energy left to worry or be scared—though I do certainly have my moments of freak out. They quickly pass, but I’m not ignoring them. I feel like I’ve dealt with this for 14+ years now—and always had a sneaking suspicion that the tumor could possibly be cancerous—that it really did not come as a surprise to me. I’m excited to eat what I want for about 2 weeks and spend time totally relaxing with my husband and family. They’re rotating shifts on 24-hour Julie Watch as I’m no longer comfortable being home alone. Faceplanting twice will do that to you. Oh, and I’ve got to get this back pain under control. It’s really inconvenient in the hospital (and life in general).

So, the plot certainly thickens in my story. Surgery is likely going to be around August 27th. We won’t know for sure for a little bit longer because I have to be completely stable and not falling on my face beforehand. I’ll be in the hospital 4-5 days max (we hope!) and then will have a long recovery for sure. Thank you to all of you for your support, prayers, food, cookies, and words of kindness. Keep it coming! It really is so helpful.

The plot thickens in Chapter 13.5

2 thoughts on “Chapter 13: Crazy Week Part 2: Benedict’s true colors

  1. Hey Julie, Ann Lam here. My God, what a story! Wanted to let you know that I sent you a long email that you might enjoy reading sometime when you have nothing better to do–no pressure. I’ll be out of town during your surgery time, but I’ve been thinking about you a lot lately, and will continue to send you long distance good wishes. Hang in there!

  2. Julie- we are thinking about you and will be praying for you! Sounds like you’ve got such a positive attitude and a great support system. I know your mom will keep us updated on your progress. God bless you!!

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