Well, I’m back. This is my first blog post after surgery last week. I’m currently on opiate-based narcotics (and various other drugs) and have the attention span of a gnat (ok, probably not even that long – more like the attention span of a gnat with ADHD), so bear with me. I promise to try to stay awake long enough to finish this blog if you all promise to bear with my ramblings and not mock me too terribly much.
When I last left you, faithful readers, I had been diagnosed with adenocarcinoma in-situ of the cervix and endocervix. For someone who has had normal chick exams her entire life, it was a terrifying diagnosis that would require at least a total hysterectomy to treat. But I got ridiculously lucky (and yes, I still consider myself lucky) in that we found this early and was confident things would go smoothly.
I had a follow-up appointment with the doctor who did the biopsies the day after he called me with the results. Nothing he told me surprised me – he recommended a total hysterectomy (removal of the cervix and uterus) as treatment. He said he could do it, or if I preferred, I could transfer to a gynecologic oncologist. I asked which he recommended, and he recommended I transfer for the simple reason that if after the surgery they found something worse than the adenocarcinoma in-situ, the oncologist would already know my history and be able to deal with things easier. Well, that and gynecologic oncologists are experts in this kind of thing. So I thanked him for his time and told him I would transfer. Last I saw of him, and it’s a good thing.
So with all of this being my first real foray into the world of TriCare (military health care) and off-base doctors in my 19+ years in the Air Force, I wasn’t sure what needed to happen next. I went straight to the source and swung by the TriCare office on base and figured I’d ask the experts. They informed me that now that I’d been seen off-base, I would stay off-base for treatment. The last doctor to see me would need to input a referral for me – it was out of their hands. Well crap. So I called my doctor’s office back and let them know. I figured it would be a week before I saw anything show up on the TriCare website, but no! I was pleasantly surprised to discover he had put in a transfer request for me in less than 3 hours. Whee hoo! Then I googled the name of the doctor he was trying to transfer to me. *sighs and beats head on desk* The woman he wanted me to see used to be a gyn/onc. Then she moved to California and dedicated her life to delivering babies and making big bucks. Why is she still listed as a gyn/onc with TriCare? Beats me. But I figured I’d meet with her and give her a shot. Orrrrrr not.
For probably the first time in recorded history, a health insurance company actually did a good thing. On their own, through no prompting by me, instead of approving the transfer to the new doctor, they replaced that doctor with a gyn/onc at UCLA. And holy crap is he good. And holy crap is UCLA good. #1 hospital on the west coast and in the top 5 best hospitals in the country consistently. I started googling my new doctor and was really, really impressed. Multiple published research papers on different gynecologic cancers, tons of awards for his research and academics, multiple fellowships, including one at Cedars-Sinai and a whole ton of other things that made me go ‘WOW!’ You have no idea how excited I was to have a doctor that might actually know what he was doing.
As luck would have it, I was able to get an appointment with him about a week after TriCare approved him. We were so excited to get my treatment started that Rudy and I drove to LA the night before so we wouldn’t get delayed by morning rush hour traffic on the way to the appointment. While that sounded like a great idea at the time, it turned out to be a really, really crappy choice. Long story short, a few miles from the hotel we got hit from behind on the highway as we were driving about 65 mph, minding our own business in the middle lane. After spinning (actually I prefer the words caroming and careening but I wasn’t sure I could pick just one) across the highway and bouncing off some stuff, my car was totaled. Totally what a girl needs when she’s prepping to meet with her oncologist for the first time, right? *sigh* But thanks to our wonderful LA family (hi Ricky and Linda!), we took care of everything with the towing company and finally made it to our hotel. Was drinking heavily that night the wisest choice of ways to deal with all the stress? Probably not, but I don’t know that anyone is quite in the position to judge me. So there. And it worked – I felt much better.
Luckily, the hotel we were staying at was only a mile from the hospital so it was a cheap cab ride. We got there a little early and immediately noticed how amazingly nice everyone was! Neither of us could believe that all these friendly people actually existed in LA. It was just the start of an all-around great experience with UCLA. After filling out much paperwork (I may or may not have agreed somewhere in that paperwork to give them my first-born child – little do they realize I’m having my lady parts removed…suckers!), I was finally called back to meet my new favorite doctor. Smart, funny, kind AND with a German accent. Awesome. My husband immediately had a man-crush on him. I figured me having a crush on him wouldn’t be the best idea considering as much time as he was going to be spending looking at my lady parts, so he was all Rudy’s. *snicker*
After much talking, question answering, lots of picture drawing and a quick exam, he laid out the options. Well, actually option – singular. Instead of jumping straight to a total hysterectomy, he wanted to do yet another biopsy first. His rationale was if he did a total hysterectomy, and found more extensive or advanced cancer when they biopsied those tissues, then he would have to go back in and do another major surgery right away. No fun. But if he did the biopsy first and found out how far the cancer had progressed, he would only have to do one surgery. While at that point I just wanted those pesky cancer cells out of me, I could see his point. One major surgery is plenty for me, thanks. So we scheduled the next biopsy, a cold-knife cone biopsy (CKC), for the following week. A CKC is done under general anesthesia as an out-patient surgery. Basically, the surgeon uses a scalpel to cut out a cone-shaped piece of the cervix. When that is analyzed in the lab, it gives the doctor a much more precise picture of how much or little the cancer has invaded the rest of the cervix since it doesn’t just take a tiny sample off of the surface. This is the best way to biopsy tissue that has been diagnosed with adenocarcinoma in-situ – there are other methods, but this is the only one that allows the doctor to see if the edges of the sample he takes are cancer-free or if it goes all the way to the edges. If it goes all the way to the edges, that’s a bad sign – it means the cancer has spread more than expected. A lot of the time a CKC will remove all of the cancerous cells, but since the adenocarcinomas like to skip over healthy cells and show up randomly, there’s no way to be 100% sure other than to do a hysterectomy. So the CKC is essentially for ‘staging’ the cancer and lets the surgeon determine the best treatment plan possible.
After meeting with my doc, we got the CKC scheduled, met with his admin folks for more paperwork, then headed down to the lab to do a ton of pre-surgery lab work. All that was left to do after that was wait until the following week for the surgery. And then wait for the results. And then wait some more. Have I mentioned that the waiting in all of this was the worst part? Oh, I have? Ok. Just wanted to make sure. Now you get to wait as well – I’m falling asleep as I type and my brain is starting to shut down. Until next time, kids.
Coming soon to a blog near you – my first minor surgery, the agonizing wait and the crushing results. And probably lots more rambling. Lots more.
Samantha, I am following your blog and my prayers are with you! I watched the video! You are one brave woman and I am happy that the process you’ve gone through this last week is on the upswing! I will continue to follow your blog and pray for you!
LaTonya Honeyman Romanick
Hi LaTonya! Oh my goodness, it’s been years! Thanks for reading the blog, and thank you even more for the prayers. I hope you’re doing well!
I was reading your blog. I just had a ckc done last week. And I will pray for you. Like you say the waiting is the worst. Hope to hear more from your blog.