A few weeks ago, on March 24th, Brandon and I went to Duke to have my tumor biopsied. Although I shared it with my friends and family, I decided not to share it on the blog until it was over and done with, and my family had come to grips with whatever new information we might have, especially if there was bad news. Fortunately, there wasn’t any bad news, so I’m ready to share the whole story now.
I was to report to the hospital the day before the biopsy, so we left our house the day before that to give us plenty of time — it’s almost a 6 hour drive, and since I can’t help with the driving, and also was still recovering with the c-section surgery, we didn’t want to take any chances on not being able to handle the drive at one go. Fortunately, everything went well, and we did get there that night, and got a very comfortable room at the hotel we used last time.
The next day, we checked in at the hospital, and spent FOREVER walking through the maze that was created by tunnels through new construction — that place is huge, and getting huger by the day! I was exhausted, and darned happy to see the wheelchair that I usually would have refused to go to my room.
That night, a doctor came in and shaved 3 nickel-sized spots on the left side of my head, and attached 8 “spots” to me. He traced around them in “Duke Blue” sharpie, so if one came off in my sleep, it could be easily reattached. He also signed his initials at my bangs line, to certify that he’d done it — I felt a little like paperwork that had been signed off on!
That night, Brandon went down with me to the main level, and he left to his hotel across the street while I went on to get an MRI. Those “spots” are visible on the MRI, so when I had the biopsy, Dr. F would be able to locate the best place to drill based on the outside markers. After the MRI I went to sleep, until it was time to go to pre-op in the morning.
Brandon was able to be with me through the whole question-and-answer process, until it was supposedly time to go into surgery. No matter what I do, I can’t get this photo correctly oriented, but they changed me into a red surgical cap to signal that I was ready for surgery — now I was signed off on AND color-coded. I might as well have been in the Out Box!
Brandon was escorted to the family waiting room and given one of those blinking “coasters”, like you get when you’re waiting for a table at The Olive Garden or Chili’s. After about 45 minutes, it started blinking, meaning he had a message. He went to the desk, and was told that the surgery was just starting. It was expected to be short, about an hour, but if it went much longer, they’d send him another page.
The next time he heard anything was within an hour, and it was Dr. F coming to say that all went as expected, and he’d looked at the tissue samples and didn’t see anything specific (basically, cells that would indicate a more extreme type of tumor than we were expecting).
I remember being wheeled into the operating room and being told that I was going to be given the sedation. The next thing I remember is coming to, and a nurse telling me that everything went well, and two people in the background discussing if they should do a couple of stitches or use glue (glue beat stitches). I told the nurse that I thought they’d told me that have me awake and answering questions during the surgery, after the initial drilling. She said they did, but they left the sedation heavy enough that I don’t remember.
For the biopsy, they used a clamp with screws to hold my head in place. The nurse shaved a spot and then the doctor drilled through with a 3/16″ drill bit, and removed 3 tissue samples from the areas that looked the most developed from the previous night’s MRI. If we’d know all we needed was a drill and some clamps, we could have saved a LONG trip — there’s a Lowe’s just up the street!
The clamped sites, at the top right side of my forehead and the bottom left side of my hairline, hurt the most for the first few days and were really bruised. Eventually, as the bruising and cuts from those healed, the feeling came back to the biopsy site. It wasn’t bad though — basically a medium sized headache on the inside with a bruise on the outside. I had some prescription medication to control the pain, and within a week, I was only using it for when I was going to sleep.
I couldn’t see my biopsy “wound” since I don’t have a hand mirror, and wouldn’t have thought to bring it if I did. Brandon took a picture for me, though, so I could see it. Please excuse the fact that I look like crap — I just had brain surgery…. And I’m sideways!
This is just after the surgery, so the site was very clean. It did bleed a fair amount while I slept off the sedation, making sort of a head-sized stain on a pillow case, but after that, it never bled again.
Originally, the doctor said they’d only remove about a quarter to a fifty-cent piece worth of hair, so I was surprised it was so big, and was glad I brought a hat because I felt very self-conscious. But I was amazed at how quickly my short hair covered it, so I only used that for a few days anyway.
The night of the biopsy, I was released by 8 pm. (It only took that long because of the nurses’ shift change at 7 pm.) Brandon and I went to dinner and to the hotel across the street to spend the night, because we were supposed to stay in the vicinity of the hospital overnight, just in case of swelling or bleeding. Neither happened, and we headed home the next day.
We got the temporary “all-clear” last week. The nurse said that the results are “optimistically murky”. Basically, what the biopsy showed was “hyper-cellular tissue”. ALL tumors are made of hyper-cellular tissue — it’s tissue that cells that are turbo-charged. However, NOT all hyper-cellular tissue is a tumor. In that case, it’s called a mass.
If it is “just” mass, from what I understand, they still refer to it as a tumor, treat it as a tumor, etc. Nothing’s changed in my treatment as far as the tumor itself is concerned. We’ll have a 6-week follow-up appointment (more like 3 weeks from now, since I’ve taken so long to get this post out!) and hopefully learn more of the details, and get some more answers and clarification.
Side note: My neurologist is trying me on a new medication that he couldn’t use when I was pregnant or nursing. He said that he has several patients that do very well on it in combination with another drug I’m already taking. The most likely side-effect is a drug rash and allergy that can get very severe, but I’ve been on it for 2 weeks now, and no sign of a rash so far, so I’m hoping I’m out of the woods.
However, they have to “titrate” me onto it (basically, the opposite of weaning off — they are working up to it. 1 half-strength pill every other day for three weeks, 1 half-strength pill every day for 1 week, and then 1 full-strength pill every day for a week. If I get through that alive, I fill the scrip and keep taking it! My doctor seems hopeful that it will greatly minimize my seizures (he’s said a few times that I have so many that it’s probably more a matter of controlling them than stopping them).
Even if they stay the same as they are/have been (2-4 a day, confined to the right side of my face and my right hand), I’m so much more alert and like my old self than I was on my previous drug regimen. I’d rather have the seizures that affect me for less than an hour daily, and be myself for the rest of the time than to go through life feeling like I’m in a fog.
