One Thing Leads To Another

Last week we trekked to Cleveland Clinic for the usual scans and appointments. This time there's no unqualified "stable" report, I'm sorry to say; rather, there was a tiny bit of growth in 3 lesions. It's not enough to force me off Nexavar, thank goodness, but it's the first that we've seen for over 2 years.

I'm always let in for a battery of standard labwork. Once in a while either Dr. G or Dr. SC will decide to follow one set of results with more investigation. I don't think it's from alarm on their part, but rather a desire to know more completely what's going on with me.

This time, Dr. G zeroed in on MCV (mean cell volume) - my levels indicate that my red blood cells are smaller than the norm. This could be from internal bleeding (on a microscopic level) or from anemia. My money's on anemia, given my history, but I'm undergoing a stool card test just to be sure. If those results are positive I suppose I'll have to go the endoscopy and colonoscopy route.

If negative, I suppose I'll be looking around for tools to boost my iron count. That remedy will be determined by finding something that doesn't interfere with absorption of other medications. Sometimes I feel like we're doing an enormous jigsaw puzzle without having the picture on the box for reference ...

I passed along the sweater I'd made for Dr. G's baby's first birthday. It's only 4 months late; I wasn't finished with it by her birthday, and I forgot to take it to the January appointment. Fortunately I'm certain it's something she'll have to grow into anyway. I'm told that her favorite color is purple - mine too!

Port Complications

Well, how did you celebrate March's exit? No matter what you did, I'll bet your celebrations were more festive than mine. I spent most of the day at OSU's Doan Hall bouncing from reception area to lab to waiting room to lab and back, undergoing the prescribed C/T and bone scans. It's been a long time since I've had a day devoted to tests - the process hasn't changed, but my usual routine of knitting and reading helped pass the time pleasantly.

Both tests involve a fair amount of sitting-around "quality time." For the C/T, of course, I have to swill my favorite beverage Redi-Cat before the scan. For the bone scan, a radioactive medium is administered 3 hours prior to the test so that it can be absorbed by the bones. Irregularities in the bones then show up as "hot spots", so I'm challenged to recite the catalog of breaks, fractures, and arthritis accurately (eek).

This time I found that my Mediport posed unexpected problems. OSU hospitals will no longer use a port when administering C/T contrast media (see this article for the story behind this decision). A different problem arises for the bone scan; when administered through a port, the medium tends to pool, and can produce a false positive - the last thing one wants.

I had the C/T scan without the contrast medium, and we compromised for the bone scan by using the port and taking additional exposures of the ribcage. I may be selfish, but I'm more than happy to spend that extra half hour in the scanner to avoid being poked to no avail.

We're off to Cleveland Clinic on Friday for the usual round of appointments. I'm curious to see if CCF also restricts using ports for C/T contrast. Inquiring minds, and all that ... stay tuned.

Life's a Trial

... or something like, a clinical trial, that is. I spent two thrilling days in hospital this week for tests and observation. How did this come about?

I felt intermittent chest pains, very minor; but Nexavar has a tendency toward angina as one of its side effects. Naturally, I mentioned this to Dr G and he urged me to discuss with Dr MC. I called Dr MC's office on Thursday. Dr MC's office brooked no nonsense and said, get thee to the emergency room.

At the ER, blood was taken and I had slightly elevated CPK isoenzyme levels. At my request, rather than observation at the local hospital, I was taken to OSU to be in the hands of those more conversant with my situation. I waited for a room to open, then waited for tests and other orders to be given.

Friday morning, I was wheeled through the hospital maze to the Ross Heart Hospital for radioisotope scans of my heart, coupled with a heart stress test. All came back negative, eventually, and Friday evening I was released to home.

Maybe it's like trying to distinguish between the improbable possible and the possible improbable - having experienced one ultra-rare side effect, can I turn my back on the possibility of another one?

We all expect there to be more side effects and reactions from long-term use of the "new" drugs, and it will be interesting to see what these are. It's something akin to living the supposed Chinese curse, "May you live in interesting times." I hadn't planned to be one of those contributing to the scientific literature, so to speak, but I'm glad to be in the thick of it, hopefully for the long haul.

Magic numbers

Yesterday was another long day in Columbus, this time for tests and a couple of treatments. A little background here: kidney diseases of all kinds bring different results, and cancer can have many complications and associated problems. In my case, because of the cancer (as a kidney disease) I have high blood calcium levels, and I have anemia.

So I take my knitting and books to Columbus every other Friday. Every two weeks my CBC (Complete Blood Count) is tested for hemoglobin levels. If they're below normal I generally receive an injection of Aranesp to combat the anemia. In addition, every 4 weeks my blood chemistry is tested, and I receive an infusion of Zometa to control the blood calcium level.

General procedure: wait for the blood draw. Take 5 minutes for the blood draw. If it's just for a CBC, wait 45 minutes for the labwork; if for CBC and blood chemistry, add another hour for the chemical analysis to be completed. If CBC shows normal or near-normal hemoglobin levels, raise hands and dance because there will be no Aranesp injection. If for CBC and blood chemistry, get the 15-minute Zometa infusion regardless.

The last two CBCs have shown hemoglobin levels in the normal range - that is, normal for real humans, not just me! So I've gotten to skip two injections. If I get a third pass I might get to discontinue the Aranesp - however, that hasn't happened yet in two years. Boo-hoo. (The darned things sting like mad - probably the most unpleasant injection I've ever had to take).

Anemia? High blood calcium? Are these important - they sound pretty minor. But anemia leads to fatigue, a great enemy. And high blood calcium, if untreated, can lead to irreversible dementia. I think I'll take my medicine.