Miracles at NIH

So I probably should have updated this multiple times already because a lot has happened since my last blog. I was scheduled for clinic Nov 8th. So on Wed Nov 7th we woke up at 2am stopped in Hanford to pick up my mom and drove to LA to catch our flight to Baltimore. It was an extremely long day of travel. I luckily slept a lot in the car and on the planes. I think we finally got to our room around 11pm. I was asked to arrive early Thursday morning because some of the blood work I would need before surgery gets sent out at 9am.
Getting onto NIH wasn't exactly what I expected. After spending 35 minutes in traffic to go 5 miles we finally entered the compound. We were asked to open the trunk and all the doors on the car and to take all of our bags inside. Security searched our car, our bags were put through x-ray, we had to go through metal detectors and background checks. We eventually got through everything and I did all my new patient stuff. In the afternoon I met my team of doctors. Dr. Hinrichs is the doctor that I had been speaking with on the phone. He is the doctor that created the protocol I am on. Dr. Butler is the resident and Dr. Yang was the attending. They all consulted together and then shared the following information with me. The lymph nodes in the neck were definitely cancerous, the spots on the lungs did not light up on the PET and they believe that they may be granulomas and not necessarily cancerous, the spot on the spleen appeared more cystic appearing and not consistent with cervical cancer. So the plan was to go ahead and do the surgery to remove the lymph nodes in the neck and start growing the T-cells. They weren't really positive the cancer was anywhere else but did say that cervical cancer is very unpredictable and that it will eventually show its its ugly head and they wanted to be ready to treat. The plan was to do the surgery asap and rescan starting in December and be ready to start treatment when necessary. Unfortunately the surgery team was unavailable that day so I was sent back to the hotel and told they would contact me after there meeting on Friday.
On Friday I got a phone call asking me to come in to meet with the surgeon. I met with Dr. Hughes and she went over all the risks of the surgery and the plan. Monday was a holiday (Veterans Day) and even though they were booked on Tuesday they were going to try and squeeze me in. So I was to be admitted on Monday. I would go to Aphresis at 6am (Aphresis: blood is removed from the body put through a machine that would separate the white blood cells and then the blood returned to the body) and be ready to go to surgery.
We still had 3 days before surgery and we were in the DC area. So we spent our 3 days playing. We got to see my cousin who I haven't seen in awhile, we spent Veterans Day at Arlington Cemetery and was privileged to have front row seats to watching Obama lay the wreath at the tomb of the unknown, and we had a blast riding the Segways on a 3 hour night tour of the monuments in DC. In addition we also got to eat at some very good authentic food places.
Monday night we went in to the hospital, I got there before my roommate so I got to choose which bed and went with the window. My roommate arrived about an hour later and I dozed off to sleep as she got situated.
The next morning I was woken up and taken to aphresis. It took a few extra pokes but they eventually got 2 IVs started and got the aphresis going. The machines kept beeping and I kept feeling a fluttering feeling in my arm but I was still able to doze off. I was woken up about an hour later and told that the aphresis wasn't working because my veins were too small and the doctor told them to send me back to my room. Once back in my room I was able to chat a little with my new roommate and was forced to starve until they finally came and got me for surgery. The surgery took a little longer than expected because they needed additional tumors but everything went well and our tickets were booked to go home Wednesday. Later on that day we found out that they really needed the aphresis but due to the blood thinner given during aphresis it couldn't be done too soon after surgery so they were going to meet with team to decide what to do. I ended up getting really sick a few hours after surgery and it ended up taking a few different nausea meds but I eventually started feeling better. That night I got to really chat with my new roommate. I don't think its fair to share too much information about her but lets just say that NIH was her ONLY option and her very elaborate surgery was scheduled for Thursday. It was nice to talk to someone who feels the same way you feel.
The next morning I saw every doctor. And I got a lot of good news. The best coming from Dr. Hinrichs who said that my cells were growing wonderfully. He said they were by far on the high spectrum and said that he couldn't hope for anything better. The only bad news was that I still needed to have the aphresis. I was given the choice to do it on Friday (which meant no going home) or to come back and do it next week. (which meant a lot of traveling). I decided to go with Friday. I was kept as inpatient that way I could return if I had any problems but was given a day pass and told to return Friday morning for aphresis.
On Wednesday I had to get some paperwork signed so I stopped by room to talk to my roommate and her husband. We had a nice chat and then went back to the lodge. On Thursday (my roommates surgery day) we went by the hospital to go have lunch and check on my roommates husband. Their son had arrived and he was waiting there as well. They gave us a quick update and it sounded like everything was going well. We were only going to stay for a short time but we ended up staying the rest of the time of her surgery. This is when I got to see a miracle. The doctors at NIH had been able to do what no other doctor would even attempt. My roommates husband started crying which then of course made me start crying. We then hugged goodbye.
On Friday morning I went back to my bed in the hospital and was taken down to aphresis. Due to my veins being too small last time the doctor came and put in a femoral line. Even though they numb it before they do it it still hurt. The aphresis took about 4 hours (I slept most of it) but they got what they wanted and I was sent back to my room where I had to lay flat for 2 hours and was then discharged. From there we drove to Philly and stayed the night and finally flew home on Saturday.
It was a VERY long trip but worth it. I have been unsure at times of what is the best choice of treatment but I am confident now that I am at the right place.
So for now I just have to take it easy. I'm scheduled to go back to Maryland Dec 17 for a scan and a follow up appointment