Those of you who have seen me recently probably have no idea, but this has been a tough couple of weeks. Most of the time I hear that I look great (aw, thanks!) and seem so much better. And that’s true, I am so much better… except when I’m not. Unfortunately recovery is not a linear thing, physically it is very up and down, and emotionally…well, I’m sort of like- I don’t even go to this school, “I just have a lot of feelings.”
I have been doing well lately- my energy is up, I feel motivated by all of the things I am doing with Mommies In Need and Best Buddies, and I actually physically feel better than I have in a very long time. So I should be elated and grateful and happy all the time, and I am- a lot- but then I have days when the enormity of what I have been through kind of ties my shoelaces together and trips me up.
I went to my GI doctor last week. I haven’t seen him since last December when he told me that we could continue trying a variety of treatments for my Ulcerative Colitis, but that he was not hopeful that we would be able to find one that worked and he wanted me to consider having my colon removed. So here I am, about 10 months after getting my colon removed and I can honestly say that without question I am better off without that organ that was making me sick.
Maybe because I was getting progressively worse around the holidays last year, right now, I am able to acutely remember the hours I missed on Thanksgiving and Christmas because I was in the bathroom or lying on my mom’s bed upstairs in so much pain that I could not go down and participate in the celebrations. So it’s good to know I am better than that. I am at a place now where, while I have not-so-great days digestively, at least I am not in that kind of pain.
But my visit with the GI was hard. Because we discussed a bunch of things that made me realize that I actually don’t have a colon. Which is a big deal. It means that for the rest of my life, my body will function very differently than everyone else’s and that I will have ongoing worries that others don’t have. For example, Curly got a stomach bug recently. Thankfully, I did not get it, which is truly a miracle since she literally vomited in my hair. For most people, getting a bug or food poisoning would be an unpleasant few days, but if I were to get one, there is a very real chance I would be hospitalized. Because without a colon, I can easily become dangerously dehydrated in a matter of hours.
I knew all of the possible long-term effects when I went in for the surgery, but they are a lot more real to me now. At that appointment, my doctor said to me that he was glad we had taken my colon out because if not I would be “extremely sick or dead right now.”
He said it casually but that statement knocked the wind out of me. I couldn’t even repeat it to my husband when he called to check in after the appointment without crying. I had to get off the phone suddenly so as to not have a panic attack while driving. I guess because I am past the “might die” part, my doctor was sort of casual in saying that. I just don’t think I understood how sick I was. I spent so much time in the past few years pretending that I was fine when there was this devastating disease tearing up my colon, that I think a part of me actually believed that I was over-reacting and I could just live with it.
What scared me so much about my doctor’s statement was realizing just how much I had convinced myself of this delusion that my UC wasn’t really that bad. He was worried that if we didn’t take my colon out I COULD DIE. And yet, days before my colon surgery one of my biggest fears was that they would take it out and do a pathology report and find out there was nothing wrong with it. That I had taken out a perfectly healthy organ and would have to live with the consequences.
I was clearly nuts- I have since become slightly less nuts. I had been having horrible bleeding, pain, and pretty much constant diarrhea almost every day for close to 2 years and I worked myself into a frenzy thinking that maybe I was making it all up. WTF, Natalie?
So now that I am not in immediate danger and my doctor just casually says something like that, I freak a little. Maybe I had to be a little delusional to get through the last few years. I know that my scale of “feeling good” is drastically warped. And even now, I probably seem perfectly healthy to everyone because I am operating at about 80%. I was operating at like 10-20% for most of the last year, so that jump is pretty significant. But I am still so anemic that I have to get IV iron infusions once a week, and my digestive system is still healing and very fragile. I can go out and have fun and feel great for short periods of time but then get so tired that I have to nap because too much activity is truly exhausting for me. And my thyroid medication is still not balanced, so every time we adjust the dosage my system goes a little wacky.
Which leads me to the thyroid cancer. For the last 7 or so months I have been operating under the assumption that my thyroid cancer was a thing of the past and I didn’t have to worry about it anymore, the thyroidectomy got it all and all I have to do is go in for a blood test once a year. I could box that up and put those worries on a shelf and focus on other things. Then I went to my endocrinologist (again a referring doctor I hadn’t seen since surgery) and she said, “I guess it was benign, huh?” Um…what? Turns out she never got the path report from my surgeon and had no idea I had cancer. Lesson learned, doctors never talk to each other when they should, you need to be on top of that shit. So I had to wait while she got the report, looked it over, and then told me that the margins were not as clear as she would like them to be and we needed to schedule some tests to see if there is any remaining thyroid tissue and if anything has grown back in the months since surgery. If so, I will need to get a radioactive iodine treatment.
Now, if I had gotten this news right after I first found out about the cancer, I could have dealt with it and understood that it was a part of my cancer treatment. But now, I find myself realizing that my cancer has a threat of coming back, so even if I don’t have to get radiation this year, I will have to continue getting an ultrasound every year forever and just praying that it always comes back negative.
Oh and did I mention that this type of radiation treatment has relatively few nasty side effects (which is great) but that if you take it (it comes in pill form) you are RADIOACTIVE for about 10 days. Like legitimately radioactive, like you can’t be around any humans for the first 5 days and no where near children for the first 10. Please remember at this point that I have twin 2 year olds. And you have to throw away all towels and sheets used during that time, and wear plastic gloves when touching anything. So I would basically have to go into a full quarantine for 10 days. Again something that would have been good to know SEVEN MONTHS AGO!
I got my blood results back and found that I do have at least a small amount of thyroid tissue left and now have to wait for the results of a scan that I am getting done on Tuesday to find out if I need to turn into a walking Biohazard. Just after that call, I went into CVS to pick up an RX and when the woman at the counter told me it wasn’t ready I had a full blown meltdown. Tears streaming down my face, sobbing- oh btw I was getting my anti-depressant, so I guess CVS lady realized just how much I need it! Because sometmes it is those little things that prove to be just too much. And as a friend recently said to me, “It’s ok, you don’t have to be strong all the time.” Oh right, that is the whole reason, I started this blog in the first place. To have a place where I could let it out, to share with the world that even when I seem to be doing great sometimes on the inside I am keeping it together with chewing gum and scotch tape. I have already dealt with too much. It’s not fair and it’s not fun. And at that moment I needed my stupid medicine so I could go home, pop a Xanax, and take to my bed for awhile. I just have a lot of feelings!
On the plus side, Sebastian has said that if I have to get the Radioactive Iodine, he would like me to bite him to see if he gets superpowers. I’m hoping for the superpower of getting our kids to finally sleep through the night on a regular basis- fingers crossed!