To all of our wonderful followers – I want to apologize for Chuck and me being “off line” for the past week and a half, it has been an especially tiring time for us, and we were just working on getting through each day.
As Casey wrote previously, last Wednesday Chuck had surgery to implant a power port device into his chest, since the doctors and nurses were having a harder and harder time accessing his veins. The surgery went well and was uneventful, and Chuck and I are both so thrilled that he now has this device and no longer has to be poked and bruised by needles on a daily basis. The down side of the surgery is that it really took a lot out of him, and the incision has been causing him a fair amount of pain. By Wednesday night the skin numbing agents had worn off and the painkillers they had pumped him full of during the surgery were also beginning to lose their effect. Chuck spent the majority of the night in his recliner, and was too sore to lie down in bed. And to make matters worse, after having an uncomfortable sleepless night, we had to leave the house at 6:30 am on Thursday to go to Chuck’s weekly MRI appointment, followed by his blood draw and clinic appointment at Dana Farber, and his radiation treatment at Brigham and Women’s. No rest for the weary.
On Thursday morning we drove the 14 miles to the MRI research facility in Charlestown – which in Boston traffic took us an hour and fifteen minutes. The graduate student who is handling Chuck’s trial case welcomed us, and brought Chuck back to the MRI machine. I headed over to the small café that is located inside the complex, made a cup of green tea, and settled in for my two hour wait. Normally Chuck is done at 10:00 on the dot, but this time they were almost a half an hour late, and I was starting to get worried. It turned out there was a complication when they went to use his power port for the first time, the MRI contrast dye that they inject into him is forced through the iv line at 5 ml/sec, and when they first fired up the contrast injector the connector on his iv line blew and dye started spurting everywhere. Luckily Chuck caught the line and kept the dye from splashing into his eyes – he squeezed the emergency bulb and they stopped the machine and pulled him out. They then cleaned him up, tightened the connection, and the second run went smoothly.
By the time we left the MRI facility it was 10:30, which is when our first appointment at Dana Farber was supposed to be. We rushed as best as we could in the downtown traffic, and arrived at DF by 10:45 – which was a record. Luckily the blood draw went much smoother, since they were able to use the power port, and then we headed over to clinic to meet with Chuck’s nurse practitioner Abby and trial drug coordinator Mary.
Our clinic appointment went well, Abby and Mary are amazing, and always take as much time with us as we need to answer questions and review how Chuck had been feeling over the past week. We discussed how the power port surgery went and how he was recovering. There was also a discussion about what new antibiotic they were going to try Chuck on – they had previously put him on Bactrum, but after only two doses he had a reaction to the drug and started to develop a rash on his chest and back. Since the chemo puts him at a higher risk of developing a certain type of pneumonia, it is imperative that we find one that will work for him. At first they thought that they were going to put him on a monthly nebulizer treatment, but Abby learned that the nebulizer treatment can not be given to patients who are on the AZD drug trial, since there is chance of a drug interaction that could cause heart problems. So Abby then prescribed a different kind of antibiotic called Atovaquone, but when we went down to the DF pharmacy to pick it up they told us that our insurance only covers 40% of the cost and our out of pocket expense will be $600 per bottle (a one month supply). We told the pharmacist to hold off on filling it for now, and we emailed Abby as soon as we got home. She is now working on trying to get our insurance company to cover a larger percent of the drug, since it is considered a lifesaving item, but we will see if they approve it. There is also the option of going ahead with the nebulizer treatment, but that would mean additional EKG’s for Chuck to make sure that it isn’t affecting his heart – and the risk of the drug damaging his heart. Since Chuck is going to be on chemo long term, this means that if they decide to go with the Atovaquone and our insurance company doesn’t come down on the cost, we are looking at a bill of $7200 per year just for Chuck’s antibiotics. So we shall see.
Friday was fairly uneventful – I took Chuck in for his daily radiation treatment and then we came home and crashed. We were both completely exhausted and Chuck was still experiencing a fair amount of pain from the surgery. Luckily we had the weekend to recover a little, and our good friends Jim and Carla came up to see us on Saturday, which we both greatly enjoyed. Sunday was the first real day Chuck was able to sleep, and after waking up at 9 am I made him breakfast, we relaxed, and then Chuck took a long, well deserved nap.
I promise to write a new blog entry tomorrow – it is an exciting day for us, the radiation midway point!! And we also want to write about the amazing acupuncture treatments Chuck has been receiving at EastWest Healthworks - more info and pictures coming soon :)