On Friday, I finished my six weeks of daily radiation with continuous chemo infusion, so I am very pleased to be able to check that particular hurdle off my list. While at its worst, the radiation was not as bad as the worst of the full chemo, even when I was at my most miserable during chemo, I knew I was going to feel human again in 3-4 days. With radiation, I started feeling pretty terrible in early week 4, and knew it was just going to continue to get worse for the next three weeks, which was very hard. But at least I can finally say that it should be nothing but improvement for the roughly six weeks until surgery.
In early week 3, I started having searing pain in my right shoulder, which was not an anticipated side effect of my treatment. Initially, my doctors just treated it with more and more oxycodone, until I was taking 40-50mg/day and it still wasn't really eliminating the pain. In addition, the extra nausea from the narcotics, on top of the nausea from the radiation and the nausea from the continuous chemo, made it impossible for me to keep anything down, and the mere thought of food was enough to make me gag. I had a hard time walking past the cafeteria in the hospital because of the food smells, and often had to leave the room when other people were eating so I wouldn't get sick. Thankfully, by the middle of week 4 my oncologist realized this wasn't working and brought me in for IV anti-nausea drugs, changed my painkillers to 60mg of slow-release morphine twice a day (which works MUCH better), and ordered a chest CT to see if I had a clot in my chest, which would be the most dangerous explanation for the shoulder pain. The CT showed minor fluid in my lungs, not enough to treat or explain my high level of pain, but no clot. So we kept on with the morphine, the nausea subsided somewhat after getting off the oxycodone, and we continued with the daily radiation treatments.
But my oncologist, bless her, was not satisfied with being unable to explain my terrible shoulder pain; she said it was keeping HER up at night because she didn't know what was causing it. So she took my CT to a second radiologist, who agreed there was no clot, and then to a third, who also initially said there was no clot. But with the third radiologist, my oncologist compared this recent CT to my initial diagnostic CT from May, frame by frame, and found something that might be a clot in my superior vena cava. She called at around 7 on Friday evening of week 5 to tell me that I might have a clot, and oh, by the way, this could kill me, so if I experienced any shortness of breath or new chest pain to head _immediately_ to the Brigham and Women's ER and stay there, being closely monitored, until they could perform the conclusive test, a venous MRI.
The venous MRI was scheduled for this past Tuesday, and sure enough, it showed a clot in my superior vena cava, just as my oncologist had thought. Apparently, it is a very difficult place to detect clots, because the standard methodologies don't capture that particular vein very well; we are lucky that Brigham and Women's has one of the best vascular teams in the country. But if there was any doubt that I was in the hands of extraordinary doctors, it has been completely erased. I am still a little amazed that my oncologist took the time and effort to go to three different radiologists, and was concerned enough about my pain to go to all of that trouble, despite flying off to conferences all over the world all the time. I am so very lucky to have such amazing doctors!
So they pulled the chemo pump on Wednesday, since the port-a-cath that I use for my chemo ends in my superior vena cava (which is almost assuredly why I got a clot there), so it wasn't safe to put anything in there any longer, for fear of dislodging the clot. I was scheduled for emergency surgery on Wednesday to remove my port from my left shoulder, but the hematologist refused to clear me for surgery, again concerned that mucking around in there could send the clot sailing directly into my heart or lungs. So instead, I started twice-a-day (very unpleasant) injections of blood thinners to break up the clot, and continued with my last week of daily radiation.
We're still continuing with the blood thinners, and I've been rescheduled for port-removal surgery on Tuesday, because the hospital is closed on Monday for Columbus Day. But once I recover from that, it really should be smooth sailing for the next several weeks. And I can tell already that I'm improving. The radiation fatigue was so intense that I had difficulty staying awake for more than about 4 hours at a time. Basically, any time I wasn't eating, in the bathroom, or at the hospital, I was asleep. But yesterday I was awake for 8 straight hours, which hasn't happened for several weeks! And the nausea is slowly subsiding, though still very present. Unfortunately, the recovery from radiation is very slow; it can take 4-6 months or longer for the fatigue to really fade. But I am so grateful for every improvement. Just knowing that it's not going to continue to get worse is a huge morale booster.
So we're plugging along. I'm very much looking forward to my month+ of no medical procedures! I know my major abdominal surgery will be awful. I'll be in the hospital for 1-2 weeks, and not walking independently for another 3-4 weeks. And I'll have to learn to deal with the colostomy and everything that goes along with that. But at least we'll have a brief respite of health before dealing with all of that.
