Posted 2 February 2016
Last week, I was doing fine on Wednesday, feeling a bit tired on Thursday, and completely exhausted on Friday. For the first time in many weeks, after breakfast on Friday I went back to bed. I had two appointments for the morning, and I canceled both. I had another appointment in the afternoon, my pre-chemo check-in, and I intended to go to that no matter how I was feeling. I got up for lunch, and then sat at my desk responding to emails for an hour or so, until it was time to get ready to go to the appointment. Sitting down, I felt fine. Walking down the hall from my office to the bedroom exhausted me, however, and I needed Irene’s help to get dressed. It was astonishing how weak I felt, and how little exertion it took to exhaust me — like walking 10 steps. I was now ready to go, and I figured if I just walked slowly it should be no problem.
Can I Really Be This Weak?
I made it about 20 steps, and started feeling unsteady. I asked Irene to bring me a chair, and I sat down. Then I passed out and slumped against Irene and the chair. I was only out for a minute or two, but by then Irene had called 911, and the paramedics were on their way. A local cop arrived in just a few minutes, and stayed with us until the paramedics arrived a few minutes later. I still felt like it was just a little episode, I could still get to my appointment. I was wrong, of course, as Irene and the paramedic pointed out in no uncertain terms. So I had my first ambulance ride to the ER. Lying down on the gurney, I felt fine within a few minutes. It felt odd leaving Irene behind, but she had to pack things for the hospital and would need to have her car.
Back in the ER
In the ER, they began their battery of tests. Blood tests quickly showed that my hemoglobin was very low, and my stool tested positive for blood. I apparently had a GI bleed of unknown origin. Just the day before, I had a blood test, and it showed that my hemoglobin was down a bit, but not super low. It dropped dramatically by the time we were in the ER around 3:30 Friday afternoon.
After several delays, around midnight I got my first unit of blood. An hour and a half after this was complete, the blood test showed that my hemoglobin had dropped again, despite the transfusion. At this point, everyone became more concerned, and another unit of blood was ordered. This was a scary period, as I still felt completely drained and there was no explanation for what was going on, or any idea when the internal bleeding would stop. Irene stayed with me from Friday afternoon through Sunday morning. It makes such a difference to have her with me; the thought of going to the hospital on my own is far more daunting. The nurses are great, but there’s nothing like having your partner right there with you.
On Saturday, I had a CT scan, which showed no changes from the previous scan two weeks ago. Then I had an endoscopy, which enabled them to look around in my duodenum (small intestine), where the tumors are. With a judicious level of propofol, the test was over before I knew it, and within an hour or so I felt no after affects at all. Propfol is a short-acting drug that delivers “a decreased level of consciousness and lack of memory for events”, according to Wikipedia. I can see why Michael Jackson liked propofol so much — it is instant sleep. Despite a concerted effort, I could not muster any awareness of the “going under” period; I went from fully awake, waiting for the drug to take hold, to “it’s all over”. As Jackson sadly found, however, propofol is too dangerous a drug to use outside of fully supervised anesthesia; the difference between “just enough” and “fatal overdose” is too delicate. What the endoscope showed was that there was no evidence of bleeding from the duodenum or the tumors. So while it was reassuring that the tumors weren’t growing, and the pictures from the endoscope are interesting, it didn’t provide any illumination of the immediate issue.
Tranfusion Reinvigorates Me
Ultimately, I got four units of blood over the course of about 24 hours. The bleeding had stopped by then, and my hemoglobin level — and my energy — was restored. It was astonishing how this transformed how I felt. I was pacing the halls and sitting in the chair by Sunday, unwilling to lie in bed any longer. Sunday morning I suggested that Irene head home, which she did; she needed some time to herself, our animals needed attention, and now that I was feeling so much better I was fine on my own. My friend Loralee came to visit Sunday afternoon, and we had a long, deep, and satisfying talk.
Since the bleeding had apparently stopped, as indicated by my stable hemoglobin numbers, it seemed unlikely that the source could be found. The GI doc, however, did not want to leave any test undone, and on Sunday afternoon I found myself getting imaged in a gamma camera, a nuclear medicine device. They drew a little of my blood — just 3 ml. They took it down to the nuclear medicine lab, where it was radioactively tagged. Then I was transported down to the gamma camera, where they injected the tagged blood back into me. A little creepy, but supposedly much less radiation than a single CT scan.
I had to lie still for an hour, while the gamma camera captured a map of where the tagged blood went. Unlike a CT, the machine is just a camera, capturing the radiation that is coming from your body. To no one’s surprise, the test showed nothing abnormal. I didn’t even get to see the picture. Curious about how this machine worked, I did a search after the test, and found many articles referencing the patient who was killed — by this same model! — when the upper section came loose and fell on him.
Fortunately, it was after, not before, the test that I read these articles — though it would have been fun to ask the technician if he had checked the bolts lately.
They Can’t Stop
Now the GI doc wanted to schedule a colonoscopy. I declined. It is the last realm to explore in searching for where the bleeding is coming from, but we can always do that later if this recurs. I had to insist that I wanted to take the “wait and see” approach before doing any more tests. As I was waiting to be discharged from the hospital Monday morning, the oncology office called to say that I should come straight there and continue with the scheduled chemo, cycle 5. I declined.
It is tough to balance near-term quality-of-life with longer-term concerns, but for now, I feel like I need a quality-of-life-now week. My energy level is 80% of where it was before this whole episode. It’s amazing how quickly, and how thoroughly, loss of blood saps you, and transfusions bring you right back up. It is wonderful that the option of getting more blood is there when you need it.
Going through this whole hospital experience was not that bad, but it is hard not to wonder what’s next. It was a vivid reminder of how quickly everything can change, for the worse and for the better.
Today was a beautiful sunny day, and for the first time since starting chemo I did some weeding in the garden. It was delightful.
I’m taking a week off from chemo and the entire medical establishment (I hope). The weather is supposed to warm up and dry out in a few days, and I’m looking forward to spending time outside.