Chapter 29: Benedict is OUTTA HERE!

Now that I have my head above water, it seems it’s time for a little update.

First of all—thanks for ALL of the prayers, well wishes, high fives, and general good will over the past week. It has been a crazy whirlwind and pretty much a blur. In many ways I can’t believe this is my 7th day in the hospital—it has absolutely flown by. In other ways I feel like i have been here for an eternity.
Here’s a recap:
Thursday the 19th: 
Arrived in full Wonder Woman gear for surgery, which ended up taking 10 hours instead of the previously scheduled 5. This took a toll on all parties involved (Daniel said Dr. Moore looked completely pooped) and earned me a trip to the ICU afterward since my blood pressure tanked from losing fluids for that long of a period of time and we were having trouble getting it to come back up.
In addition, because I (and apparently Benedict) live in a “go big or go home” mentality at all times, Benedict had interlaced himself around some fairly important structures including my subclavian vein and my phrenic nerve. The subclavian vein is one of the main veins that drains blood from the arm while  the phrenic nerve is what provides power supply to the diaphragm. I was none too happy of a camper when I heard that he had to cut my phrenic nerve, resulting in diaphragm paralysis. My close PT colleagues know my little professional obsession with the diaphragm relative to breathing, posture control and pretty much all body functions, so this was not fun news for me to hear. Fortunately I have a kick ass PT myself who has dealt with this situation before. They ended up doing a nerve graft to help keep the diaphragm from being completely useless.
I recall waking in recovery around 5:30 PM (surgery began at 7:15 AM) thinking for sure that the clock must be wrong since this was only supposed to be a 5 hour surgery. I eventually made it to the ICU around 8 PM. I didn’t really sleep at all that night because I received 4 units of blood in addition to liters and liters of fluids in an attempt to bring my blood pressure and H/H back up (my hemoglobin had dropped to 5 in surgery) and to do respiratory therapy.  They tried to sit me up on the edge of the bed (I was completely dependent and couldn’t move myself) and I felt terrible so that didn’t work. I may or may not have gotten a few hours of sleep in between all the work the ICU nurses were doing for me.
Friday the 20th:
In early morning the PT came bright and early to get me up—turns out she has helped teach at Emory in the past, and I was up for the challenge making it all the way down the hall and back with my trusty rolling walker and my 3000 accessories (IE, IV lines, chest tube, catheter, etc) in tow. I could not hold the weight of my right arm so the walker was helpful to let me rest it. I had a lot more respiratory therapy and the speech therapist came and put me on a liquid diet only as I was having a little bit of trouble swallowing. Having a tube in your throat for that long and having your neck muscles cut open can make swallowing a bit of a challenge. THAT is quite an unpleasant feeling. But I’ve never been more excited for broth and jello.
I got an EKG and a chest ultrasound to check out my heart because I was registering an arrhythmia (abnormal heart rhythm). Flash forward to 7 days later when I asked Dr. Moore what this was all about. He had to repair my subclavian vein and used a tissue flap from my pericardium-the sac surrounding the heart. So my heart had a little freak out but he said this would eventually clear up. No big deal.
All day Friday I was in the ICU working on getting more stable BP and getting up and moving. Daniel was there to take plenty of pictures. Eventually that evening I was transferred to the Intermediate Care/Pulmonary & Thoracic Unit and was met by some awesome nurses, one whom had been able to observe my surgery and who told me my medical team loved my funny tattoos I’d put on pre-surgery. Class clown mission accomplished. I went on a few short walks and was able to discharge the catheter and the oxygen-wahoo! Way ahead of schedule!
Saturday the 21st:
Big focus here was still stabilizing BP and getting my breathing back to normal. Cue my competitive self with my incentive spirometer. I had lots of respiratory therapy and eventually got released to a normal diet. Wahoo for Chick Fil A and pizza! We had a tough time getting my pain under control and decided to discharge my epidural as it wasn’t doing anything to help. We switched to a PCA pump of dilaudid, IV tylenol and IV robaxin (Muscle relaxant) and by Sunday this did the trick. I was walking a good bit but still feeling very tired. I was put on a beta blocker to help with my heart rate which was crazy high — at all times I could hear it pounding in both ears. Not very friendly when you’re trying to sleepz
Sunday the 22nd:
The nurses started to have to keep up with me running laps around the pulmonary and thoracic unit. BP began to stabilize. Pain was much more controlled. We noticed that my right and left arms began to balloon up cartoon-style. SO. MUCH. SWELLING. Worked on elevating and icing for this as it was believed this was normal following chest surgery.
Monday the 23rd:
Well this was our original “go home” date but that didn’t happen for me. I was still draining like a champion out of my chest tube (the ticket home is for that to stop) and my right arm swelling got a lot worse throughout the day. I was in much less pain and still walking way more laps around the unit than what was expected of me Making great progress. That evening my awesome nurses called in the IV team who realized that both IVs in my right arm had infiltrated (I.E. they were no longer running into my veins, but instead into my tissues) so they had to switch the IVs to the other arm. This certainly could have contributed to the swelling and Tuesday morning when I woke up things were looking a little better…
Tuesday the 24th:
Until they weren’t. Dr. Moore ordered a doppler study for my right arm and both legs because-lo and behold-both legs had also ballooned up. I had that Tuesday afternoon after a million other tests. They also thought I had a mucous plug in my right lung and they were going to have to do a bronchoscopy to remove it, so I had to fast for most of the day. Fortunately (to everyone except my appetite) my chest x-ray showed no plug so we cancelled the test and I ate like 3 lunches and 2 dinners. Fasting is the WORST for me! I was fitted for a compression sleeve for my right arm swelling which immediately began to help both the swelling and the sensation that my arm weighed 400 pounds. I later found out Dr. Moore removed several structures (part of my collarbone being the main important one) that attach the arm to the ribcage…so that also makes my arm feel really heavy. Pain still doing well and still walking like a champ. But my chest tube continued to drain like crazy! Dr. MacKaye came and removed my surgical dressing and my scar looks awesome! It goes straight down the  middle of my chest and down under my left breast. He did a really great job. We got the pathology back and it turns out that Benedict was pretty much completely removed, however a very small portion of “Micro disease” remained behind the part of my collarbone that he left behind. Dr. Moore said he was unable to take this out because it was too close to my brachial plexus-the nerves that supply my arm. So I will have radiation. Dr. D’Amato came to meet with me Tuesday night and confirmed this and also that I will likely continue with the chemo (Xalkori). Not to most exciting news for sure, but I am ready and willing to do whatever it takes. I’ve come this far–what’s a little more? We don’t have all the details on radiation as she is going to talk to her sarcoma colleagues across the US and her local colleagues here in Atlanta to make a plan. Dr. Moore presented my case at the thoracic oncology conference yesterday and said that all of the physicians there were shocked I was not in the ICU given how involved my surgery was. Pretty awesome 🙂
Today, Wednesday the 25th:
Still draining like crazy from the chest tube. I’ve been hamming it up dressed as wonder woman and cheering up everyone on the unit. We have weaned me completely from all IVs including fluids and the PCA. Percocet is an amazing thing, though it really hurts in my pectorals major and my chest tube area when it wears off, so we are now working on the perfect schedule to manage that. I feel like I have great energy and overall I’m feeling a lot more like myself. Dr. Moore did confirm today that I have clots in my right arm, to be expected given the injury from the subclavian vein repair. I have been on heparin since Monday and he says this is all we have to do. Still kind of eerie to think about that. He also said later on we will likely do some type of vascular surgery to repair the vein with a stent. Daniel has been the BEST caretaker and I’m so impressed with how he is able to read me and anticipate my needs, communicating them to the physicians and nurses long before i often even realize them myself. I’m really grateful for the awesome nurses on the pulmonary/thoracic unit and thrilled with my progress so far. My parents have been here the whole time and also amazingly supportive. My friend Julia has outfitted my room with some amazing pump up posters. For such a tough time, there are a lot of bright spots too. We don’t have an official timeline for going home, though I am hoping for sometime by the end of the week.
Cross your fingers that this chest tube slows down!