November was quite busy. I didn't share this previously, but a few days prior to the wonderful seminar at work I chatted with an oncologist colleague that helped initiate an appointment with Dr. D. Dr. D was at the seminar interviewing his patients and was mentioned to me months ago by my doc. He explained that Dr. D from Boston was very well known and possibly a better oncologist than him. Based on the emotional appointment with Dr. S and the chemotherapy failure, it was important to see this other expert. Interestingly, he no longer sees patients so I technically made an appointment with another doctor that Dr. D recommended.
For some reason the week of the appointment ended up being very emotional for me. I'm not entirely sure why, but perhaps it was anxiety. I had to travel via Amtrak since the radiation side-effect on my ear did not allow flying so I was concerned about being comfortable during a 5 hour trip. It was decent, but after arriving on Tuesday night I certainly wasn't up for a nice dinner out or doing anything else in Boston. It was room service followed by sleep. I actually ventured to the hotel's restaurant for breakfast the next morning, but I ended up laying down on the booth during most of the meal. Again, I'm not entirely sure what caused these 'actions,' but after breakfast I was back in the hotel room sleeping again!
Michael eventually wheeled me to the hospital for my appointment in a wheelchair. In a lot of ways this has become my new transportation mode. (It is strange to be in a wheelchair while in an elevator!) The hospital was impressive with lots of young students and interesting technology. I had to wear a GPS type device that indicated how long I was waiting for the appointment and where I was in the building. I certainly never had this experience before even at some of the country's best hospitals! The appointment was a few hours long - HUP and PA Hospital didn't sent up all the required documents, images, and other required medical records in time so most of the appointment was discussing the CAT scans and medical info. Interesting, Dr. D was actually at my appointment a few times that day and shared his opinions. Frankly, both Boston docs were very much in agreement with Dr. S and were proponents of me staying with him, if I was OK with it.
We took the trip home on Thursday and then went for another CAT scan on Friday at Radnor to see the status of the tumors without chemo and the size for the ones with radiation. We found out on Monday, it was a Dr. S appointment, that the tumors did not change size -GOOD! It would be certainly worse if the tumors increased in size after not having chemo for such a long time. We also discovered that the abdominal tumor had a larger amount of necrosis, meaning that more of it was dead! It was amazing that the results were actually agreeable. I didn't have to head off to the hospital after this CAT scan!
Dr. S and I discussed the Boston trip; he was very acceptable and open. There were no nasty emotions and frankly Dr. S showed a sense of collaboration and easy interaction with the Boston folks. Before the beginning of the next treatment cycle we had to wait for pathology from Boston. Depending on the result the chemo drugs would change. I was hoping for the easy one - although compared to my first chemotherapy in August, anything is easy. It was approximately a week before we found out that Boston shared the same diagnosis, which resulted in a mixed feeling from me. It was good to know that the two hospitals came up with the same result, but it would be nice to have an official type of sarcoma.
I started treatment right away - word from Boston came on Tuesday and treatment started on Thursday, December 1. I started off with Gemzar on week 1, then Gemzar & Taxotere the following week. Week 3 is free from treatment and then the process starts again. So far it has been rather easy - I do experience the typical fatigue, but other than that few side effects have occurred. We'll see how the next round goes!
I am dealing with neurological pain however; which is not fun. It is not chemo oriented, just related to the tumors. It was obvious even before Boston trip that my pain medication Percocet was not working. Considering that it is an intense narcotic I was surprised that it wasn't working and was frustrated that it resulted in many sleepless nights. After explaining this to my nurse and sharing a story that when I had an itchy sensation in my back I couldn't feel my hands scratching it - ah ha - we have nerve issues. I am now on neurontin and have found a huge difference in how the body feels. I still need Percocet every so often, but not nearly as much.
I've been working on the holidays. I did get to work's holiday party, shopped for the boys, and helped decorate the house. Braeden is super excited about the tree and ornaments. It's been an exciting and wonderful time - truly looking forward to Christmas except I already know that I'm getting a bad gift that day (has to do with required paperwork). I will share after the holidays.
