Posted 7 June 2016
For the past few days, my pain level has been a little higher and I had some mild on-an-off fevers. Then, Friday morning, I woke up drenched in sweat, with a soaking wet bed, and a fever of 101.
After a morning of making calls to doctors and waiting for them to call back, we went to the ER at noon. I had high hopes of getting some IV antibiotics and going home, but that was not to be.
My white blood cell count was very high, and I was already on two different antibiotics. So they added more antibiotics via IV and gave me lots of fluid, along with a chest X-ray, an ultrasound, and blood work.
Another Stent Clean-Out
Based on the ultrasound results and an elevated Alk Phos level, they decided to do the biliary stent cleanout right away.
If you’ve been following along since the start of this story, you may recall that in November last year I had a plastic stent put in at UCSF, then in December it was replaced with a metal stent at CMPC. In February this year the stent was cleaned out here in Santa Rosa, and a plastic stent was inserted into the metal stent.
In Friday evening’s procedure, which is endoscopic and pretty much painless, they removed the plastic stent, pulled a balloon through the stent to clean it out, and then inserted another metal stent inside the first metal stent.
I went to bed Friday night with high hopes of going home in the morning. As long as my white blood cell count (WBC) was dropping, they expected to discharge me.
Unfortunately, my morning blood test showed that the WBC had gone up 10%. It appears that the current antibiotics aren’t resolving the issue. The infection might be in an area with little blood flow, which makes it hard to reach, or my bugs may have developed resistance to the antibiotics I’ve been taking.
Given this situation, the hospital brought in an infectious disease specialist. She was very knowledgeable and clearly had spent time to understand my situation.
The biggest factor limiting the choice of antibiotics is a note in my chart that says “allergic to ampicillin.” Because of this, my doctors have always avoided all antibiotics that are related to penicillin. Since there were other good options available, the motivation to test a potentially serious allergy just wasn’t there.
Now, however, the situation is different; the alternatives aren’t doing the job. So they gave me a modest dose of IV Ampicillin, with the nurse standing by with rescue meds should I actually be allergic. Guess what? I’m not.
Monday’s Turn for the Worse
I went to bed Sunday feeling pretty good, and reasonably confident that the new antibiotics were going to do their magic and I’d be discharged.
Monday morning, however, had different ideas for me.
I got up to go to the bathroom, and made it literally less than 10 steps before I felt utterly exhausted and had to sit down. I had two more episodes like this during the morning, the last of which was truly scary, and my heart was racing, I felt unable to get enough air, and completely out of control.
It wasn’t quite a code-blue situation, but they called for what they called a rapid response team, which brought 10 or so nurses and doctors from various parts of the hospital. After some IV meds, I calmed down quickly and was able to sleep.
This crisis was due to very low red blood cell counts (hemoglobin of 7.1), so I got two units of blood and I feel enormously better.
So why was my hemoglobin so low? I have a GI bleed of unknown origin.
They did a CT scan, with some special modifications to detect blood flows, and they were not able to identify any bleeding. They did note many issues, however, ranging from growth of the metastases in the liver to new metastases in my lungs.
My Enigmatic White Cells
In general, the white blood cell count (WBC) goes up when your body is fighting an infection. The normal range is 4 to 11 (K/uL). On March 2, my count was 7.7, a perfectly wonderful value. But it broke out of the normal range on April 1, hitting 19.2.
Last week, my WBC was 36.9! As a result, the first session of my new chemo regimen, which would have been Thursday, was canceled. When we came to the emergency room on Friday, my WBC was 43.6, a value rarely seen.
My most recent blood work, Monday evening, shows a WBC of 72, something that none of the doctors, specialists, or nurses here has ever seen.
The infectious disease specialist visited again, and she was very confident that the infection was well controlled by the antibiotics, and that no infection could boost WBC numbers into this range.
Furthermore, I have not had a fever for 3 days, and it seems very odd to have an infection that drives WBC to unheard-of levels yet does not cause a fever or any of the other symptoms of fevers.
Once again, however, another morning brought a turn for the worse: bloody stools and very low hemoglobin.
I don’t have the energy to write up Tuesday’s story right now, but the bottom line is this: I have a very large GI bleed, suspected to be coming from the cancer in some way. I may be able write more later.