It's been quite some time since I've posted, I know. A ton has happened between now and then, I'll try to fill in the gaps. Warning: Choppy novel ahead.
My husband came home at the very end of September, nearly a full week before my surgery on Oct 6th. That timing was awesome, I'm so glad we got some time together before I was sliced and diced. I needed to lean on him more than I knew (or let myself acknowledge).
The whole surgery thing was ... interesting. I was a little nervous but not overly so and my husband seemed to handle it well. My dad and step-mom even drove down from Ohio to be there for the surgery and make sure I came through okay, which was surprising but very sweet of them. I was supposed to be discharged the next day but of course, I wound up in the 2% group with post-op complications.
The parathyroid glands are located directly near the thyroid and can undergo some trauma when the thyroid is removed or even be removed with it. Of course, one of mine came out with the thyroid and the other three went into shock. My calcium, which they produce, went into a free fall. Low calcium is bad, apparently. They started me on heavy oral doses of Vitamin D and Tums and when that maxed out, resorted to IV calcium. They don't like to use it, the stuff is very caustic to the veins and will eat away tissue outside the vein. They actually showed me how to stop the IV myself before calling the nurse if I felt any burning at all. Fun. My parathyroids didn't want to cooperate, they wound up doing two calcium infusions and we spent four nights in the hospital. My poor husband was in an uncomfortable recliner next to me the whole time and didn't complain once, bless him. He was a saint in the hospital too, fetching whatever I needed and helping me in and out of bed as necessitated by the shakiness that accompanies the low calcium. As an aside, I am gloriously thankful for sleeping pills or I'd not have gotten a wink of sleep in the hospital with everything they were checking every couple of hours! (Blood draws at four in the morning? Really?!)
We came home Monday night and had a meal waiting for us in the refrigerator, thanks to an awesome neighbor. Tuesday night brought another yummy meal from a friend and another complication popped up too ... hives everywhere. We still don't know what caused them but the endocrinologist switched my thyroid replacement hormone and ultimately gave me some prednisone since they just refused to resolve. (I still have remnants of my aptly named polka-dots, actually.)
My thyroid levels are elevated, whether due to the several days of no meds thanks to the hives or too low of a daily dose, we don't know yet. I have a recheck in a couple of weeks and we'll do more labwork and re-evaluate. In the meantime I'm exhausted most of the time, to the point where a couple sets of stairs winds me, which isn't normal for me at all. It's all I can do to get a shower in the morning and function at half the capacity of a normal person, really. By 7pm I'm ready for bed and if it weren't for my furry, wrinkly alarm clock, I could probably sleep well over 12 hours. The brain fog isn't very fun either, I forget things all the time, can't find the words I want ... I feel like an old lady and I'm not even 30.
The major blow really came on Monday of this week, though. We met with the endocrinologist to go over my pathology and discuss whether I need Radioactive Iodine (RAI) treatment to kill any remaining thyroid and attached cancer cells. The thyroid came back as definitively cancer, which we expected but wanted to make sure of. The surgeon actually sent a sample down to the lab while I was on the table to ensure it was cancer before removing the entire thyroid, which I requested. He also removed a lymph node which was biopsied and came back suspicious, along with several nodes around it, to be examined with the thyroid for final pathology. Well, he thought he did. Somehow, the leading surgeon for the head and neck oncology department and ENT managed to not get any lymph node tissue in the entire sample. This means that I still have a lymph node which is very possibly cancerous in my neck. RAI isn't very effective in killing thyroid cancer within lymph nodes because the lymphatic tissue doesn't uptake the iodine like the thyroid does, which was why the surgeon was supposed to remove the node in the first place. I actually left the first surgeon I saw because he didn't want to remove any lymph nodes and wanted to treat with RAI after surgery only. I chose to drive 2 1/2 hours for treatment and go to a leading cancer hospital and see a surgeon with many years of experience so that I wouldn't wind up exactly where I am now. I'm so angry that I can hardly even see straight when I think about it.
Everyone told me this was the 'Cadillac of cancers.' I was told it was no big deal, it's just a small surgery and you pop a pill every day for the rest of your life, no biggie ... yeah, sure. 'Cause cancer is such a picnic. Right now I don't know if they removed all of the cancer or if it's spread at all. I don't know if I need another surgery or RAI or both at this point. RAI is no picnic in and of itself and it also means we can't try to start our family again for at least a year after the treatment. Some people need it more than once, even. (Did I mention I found the cancer during a course of fertility meds while trying to get pregnant? That part is kind of a big deal to us.)
On top of that, the endocrinologist copped an attitude about the surgeon doing the double checking when he 'knew it was cancer all along' and talked about people thinking they get better care at a larger center when that's not always the case ... I suddenly wanted to punch him in the face, right there in the office. (Did I mention I'm angry?) I mentioned the exhaustion and emotional ups and downs and he told me to wait until the recheck, take it a day at a time, and make sure to get out and walk 20 minutes per day, like that will make everything better. A 20 minute walk everyday makes everything better, of course. (Where would I get the energy for that anyway?!) No, I didn't punch him, but I did take the stairs down when leaving his office, lest I explode while waiting for the elevator. I'm beyond frustrated at this point and making me feel stupid for seeking what I thought was superior care and making the best decision I could with the information I had was intensely inappropriate. If he disagreed with the surgeon's plan, why didn't he pick up the phone and discuss it, you know for the benefit of their mutual patient?!
I'm also struggling with this weird kind of guilt - I don't feel like I've earned the 'cancer' label. I didn't go through chemo, the survival rate is in the 90% range, and I'm just dependent on a medication to replace an organ for the rest of my life. There wasn't this big 'battle' or prolonged treatment, just a surgery and a no big deal attitude from most people. I don't look sick, I'm just one of those 'thyroid people' who complain about being tired. I don't quite know how to process it, really. In comparison to what some of my friends are going through it pales greatly, but it isn't this easy journey it was purported to be either. I'll struggle with my thyroid levels the rest of my life, that 'magic pill' isn't exactly magic. But, I'm not likely to die from this. I didn't spend weeks being given poison and lose my hair ... it's a strange place to be. When I wrote that post below about perspective, I meant it. It's still true, but I'm not so fine right now really. I'm not sure where I 'fit' in the grand scheme of illnesses, if that makes any sense. I wouldn't feel right going to a cancer support group, for instance. Yet, I'm craving someone who could possibly understand all this craziness.
Side Note: I know this is all over the place, thanks for reading if you've gotten this far. I needed to get it out somewhere and since my husband got on a plane back to the middle east yesterday, here I am.
Right about now I am feeling very sorry for my husband. When you add crazy hormone levels, exhaustion, a little touch of what I think is post-op depression or depression from the thyroid levels, and general recovery on top of steroid induced mood swings ... let's just say I feel like I've taken up residence in Crazytown. The logical, rational part of me is still in there and more often than not is able to sort through all of the emotions and see what's caused by what, but that part isn't very dominant right now. The emotions are running about 80% of the show and I hardly even recognize myself most of the time.
It's probably a good thing hubby has a few more months left of deployment, maybe it will help our marriage survive this crazy journey. Well, maybe not, I could really use one of his hugs right about now. Is it next year yet?