Today marks a very special day. Today marks the first day of the rest of my life. Today marks a new beginning. I can breathe easier.
Five years ago yesterday, August 27, 2009, I was told I had cancer. My doctor told me we needed to keep me alive long enough for a cure to be found. Our first mark, he told me, was five years. Well, I did it!! I made it to five years!!!
Over the past five years I've been to hell and back a few times. Here's a little taste of what the road has been like.
Once treatment stopped on August 5, 2010 (Last day of chemo!!) I have had to had blood drawn through a port still implanted in my chest every six to eight weeks. That blood is tested. They call me within two to three days and tell me what my counts are. Often I'm told that my white count is down and that I should stay away from crowds, wash my hands often and use hand sanitizer. For two yeas (2010-2012) I had scans every three to four years and then the doctor pushed that out to every six months. The problem was that almost every scan showed something the doctor didn't like so I'd have a second scan or a biopsy of some kind. I had my thymus biopsied in 2011 because for three consecutive scans it showed up a little "hot". Thankfully it was nothing!!
But these scans--boy they suck. There are a few different kinds of scans you can have done on your body. There is the MRI (I've had a few of those and I really don't like them). Those tubes are long and narrow and the scans take some time. There is the CT scan, which is usually the ones I get, but they often lead to the PET CT scan. The CT scan is pretty quick and harmless--sort of. The tube is more like a donut (not so long and narrow) and thankfully they are scanning my lower torso--most of the time--so I don't have to sick my head in the tube. They are usually very quick scans--in and out of the room in ten minutes, but it's what happens during those ten minutes that is the killer.
First you go in fasting. Then they give you this drink. GROSS! You sit in their waiting room drinking this banana--right banana--drink; the first one very quickly and then you sip the next one over the next 30 minutes. YUM--NOT!
Then they try to find a vein for the IV, hard to do when you are dehydrated. Then they take the first set up pictures: "breath in...hold............breath normal." (Right breath normal....I know what is coming up.) After about three scans, a total of about three minutes--seriously it is that fast--the nurse comes in and hooks up the IV contrasts. DANG that stuff burns!!! You can feel it immediately start to burn your arm, your hands, your chest and then it goes down your legs. The worst part is that you feel like you are wetting yourself. It is an odd sensation and you feel like you are holding a flame in your hand and that someone is holding flames close to your body. It is so HOT!!! You then go back into the tube to get another set of scans. Again, "breath in...hold............breath normal."
Now the whole time you are not supposed to move because it will screw up the before and after comparison. Easily done right, WRONG! I have a problem with the IV dye contrast that they pump into my system. I've thrown it up a couple of times and so it throws off the scans and I have to come back in a few days to do it all over again, unless the radiologist doing the scan is awesome and can get "the shot". I still waiting for that awesome radiologist. Thankfully for the last three or four scans I've been able to not throw up until after the scans are complete.
Thankfully for the last two years these scans have come back pretty clean. In fact my last scan showed that my lymph node in my right hip (which had been enlarged the last set of scans) had actually shrunk!!!
Now the PET CT scans. Those are the worst!!! How to described this procedure. First it starts with the doctor and scan clinic and insurance carry all getting together to decide if I need this and how much the insurance company will pay--yes, they are that expensive that you have to have pre-approval for them! Then they schedule it. You have to be on a special diet (no carbs at all--not even toothpaste!) for 12 hours and then fast for 12 hours and then you go in for the scan. Thankfully just before your visit you are to drink 16 oz of water, but don't pee!
First they have to find a vein. Now my vein, bless their little valve are so scarred from five years of being poked--and I thought leaving my port in was the ticket, but only those authorized to work on ports are able to access them and the technicians aren't! The worst experience was at a PET CT scan, the nurse took NINE pokes trying to find a vein and on the tenth try I asked him to stop. I wanted someone else. That nurse took two more. It was not fun. But once they do find a vein you are then hooked up to this special stuff they pump into your system. Now this stuff is radioactive. Just what you want right? Let's just put poison in my body! In fact the lead box they bring it in is pretty heavy and the syringe is lead too. How comforting!
Then you can't do ANYTHING! Seriously NOTHING for 60 minutes. You can't read, you can play a game on your phone, you just have to close your eyes (seriously, close them, no eye movement either) for 60 minutes. Oh, and you have to try really hard not to go to the bathroom. Remember that banana drink from the CT scans--well you also had that on top of the 16 oz of water. That's hard. They usually let you pee just before the scan, WHEW!
Then you go in and get scanned. It is very similar to the above scanning--kind of fast and quick. But because you have had a radioactive poison put in your body, you aren't supposed to be around pregnant people or children for the next 12 hours. "Right," says this mom of six children. Oh, and you had better not get to far away from a toilet, you're gonna need one soon and often for the next 24 hours because that stuff is coming out one way or the other. And it burns either way. That's true for both kinds of scans.
Thankfully we don't do PET CT scans too often. Dr. Kraemer doesn't order those unless something shows up to worry him.
Lately my trouble has been my bladder. It started in January and just the day before my five year mark they took a third biopsy from my bladder and they hope to have the results in a couple more days. The first two biopsies showed cancer markers but they weren't too alarming. But in true fashion the tests only went so far and even though it showed cancer they couldn't pinpoint the type of cancer and there wasn't enough sample to go further in their testing. So that's why all the biopsy. But no matter what this biopsy showed--I made it to five years!!
It hasn't been an easy five years--in fact they were pretty tough. Emotionally, physically, medically and financially they have been extremely rough. I can only hope that the next 25 years are smoother.