First week of trial

After being back here for a few days, James and I had settled into the Safra Family Lodge and had met with the team who seem a very knowledgeable and down to earth group of people. I told them of my concerns with regard to swallowing changes and my recent hoarse voice which I am now thinking may be due to the progression of disease as opposed to a viral infection. This is all very overwhelming and has made me second guess the reasons why I am doing the trial. Should I be at home seeking conventional chemotherapy and radiation to shrink things, allowing me to spend time with my family, or is this truly the right direction for me.
After a barrage of scans and tests over the last few days and enjoying the freedom of two nights in the lodge and one run with James. I am now officially an inpatient as of today. I had my Hickman line inserted today, Wednesday and met with the whole team of Doctors, some of which visited me 3 times in the course of the day to check that I fully understood what the trial entails and to answer any remaining questions I had. Met with the dietician who was keen to prepare any kind of protein smoothie I want and wants to make my life as easy and healthy as possible during my stay.
The team of nurses and Doctors are very approachable, down to earth and brilliantly minded, so I am confident that I am in good hands.
I made sure that I got out for a walk round the grounds and sat in the court yard between the waiting. And the team know that I will be trying to do that as much as possible.....nothing like fresh air!!

The plan was to start chemo on the Thurs evening, 2 days of cyclophosphamide and 5 days of Fluberadine. However on Thurs afternoon, the doctors did their rounds and told me that they planned to do a Stem Cell Harvest, to harvest my stem cells in case my immunity didn't return to normal and that they would then rescue me with my own cells. This would mean twice daily injections of Neupogen and daily iron pills to encourage white cell production from the bone marrow and then they would do apheresis to harvest the cells. Again plans have changed and there is no firm date for chemo.

Friday late afternoon we went into Bethesda and had a lovely dinner at a French bakery and started to make plans for the weekend.
On Saturday we did 30 mins on the cross trainer and then went for a walk in the rain to Rock creek trail near the NIH. We knew that we wanted to catch a movie that afternoon, so made it to the metro station  returned to our new favorite French café for a quick lunch and then found the movie theatre in Bethesda and watched the 1.30 showing of If I Stay.
We headed back for my injection and line flush.
Sunday, I headed over early for my injection, discussed my rib pain and prescribed some oxycodone and then we went to All Fired Up in Bethesda to do ceramic painting, we did that for the next two days accomplishing a mug and plates for the kids.
Monday, did treadmill for 30 mins before morning took time to discuss my rib pain that I had been getting at night and wasn't being relieved by oxycodone or percocet. The sleep disturbance is partly due to the irritation of the Hickman line and the pain in my ribs. The Percocet and oxycodone don't help and I am awake every hour during the night trying to get comfortable. My eyes feel heavy and tired and I need to get my body to sleep. The fact that the analgesia isn't working puzzles me, as I am not one for taking heavy meds, so I asked if I could have Ativan to help relax me. I had a meeting with the Palliative Pain team and they were open to my suggestion, offered me acupuncture and relaxation techniques.
Final day trip was  into Georgetown, an area of Washington full of character of old America, brickwork, cobbled streets and canals, it also has a beautiful river front where people gather to enjoy and play in the water fountain. We enjoyed a delicious lunch at a patisserie and visited my favorite hat shop called Gourwins to buy a hat for Heather and Finlay, we enjoyed a frozen yogurt before heading back to the lodge for dinner. That night the Ativan worked a treat and was able to have a good night sleep...at last
Wednesday, another shot met with the doctors and then went back to the lodge for a run round the campus, it was great to get out running again, although slow. We relaxed in the lodge gardens, had a leisurely lunch and iced coffee in the court yard before heading back to the gardens for a game of rummy cub, skyping with the kids and mum and dad.
Last injection and the word that I would be required back on the unit at 5.30 for final injection and stem cell harvest.
The stem cell harvest took six hours and felt drowsy and wiped out during that time, we returned to the unit after 2pm, and met with a recreation therapist who gave me a sound therapy chair which plays beautiful ocean music, met with the doctors who want to check that they have enough stem cells. If not I will have to go through it all again tomorrow and another 2 injections. Either way I need replenishing with Magnesium and Potassium. They also told me that the chemo won't start until next Friday, so I have the option of going home and returning on Thurs for blood work.
Another disappointment in the fact that I want to get this up and running, however it would be great to see the family and the kids, take in the Highland games and be there for the first day of school. Only to go through another series of goodbyes.