If you're a previous reader, you might've caught the fact that I found my cancer during a course of fertility medication. As a bit of a backstory there, we'd been trying to start our family off and on and weren't having any success, despite accurate timing, et cetera. Then my husband's deployment got moved up suddenly. We were out of time and looking at a ten month delay, so we opted for some IUIs with frozen, umm, samples, given before he left. That first fertility medication led to my thyroid nodule freaking out at the sudden lack of estrogen and making itself known, followed by a failed IUI, thyroid ultrasounds and biopsies, and ultimately a cancer diagnosis in my 20s. Baby plan effectively shelved.
I was lucky and didn't wind up needing Radioactive Iodine (RAI), which comes with a 6-12 month wait to conceive. Consequently, we started trying again as soon as my husband got home in February 2012.
Here we are at the end of March 2013, and we're still waiting to be parents. In that time frame there has been a PCS to a non USMC base, a referral to a GYN, her referral for me to go to a reproductive specialist, a surgery to remove what turned out to be Stage IV Endometriosis which is likely the main cause of our infertility, and two IUIs since diagnosis. I fear we're headed toward IVF and I'm questioning whether that will even work at all given the nature and severity of my endometriosis.
It's just a lonely place to be right now. My husband doesn't know what to say, my friends don't know what to say, and all I want to do is just shut down until I get pregnant. I do have one friend here who's great, but that's it. It's kind of like a deployment, except there is no end in sight and I'm in a new place where none of the 'ready made' friends here can relate at all to what I'm going through. Of the few MC wives here, they either have young kids or college age kids, we just don't have much in common. It's almost like I feel too vulnerable to reach out and make new friends another way, so I'm just kind of in limbo. Waiting. For the only thing I've always known I've wanted. Except this time I'm not sure I'll ever get it.
Yep, me too.
We should start counting the numbers of "I missed that," "What did you say?" "Can you repeat that?" and "Say that again?" within each phone call, I think. A dime for each one in a jar, maybe?
No phone calls are worse than shitty phone calls, true. But shitty phone calls are still kind of shitty, especially when I'm having a cancer righthereinmyface (plus needles) kind of day and need to talk to my husband.]]>
More than once if I've said something about a side effect or struggle, I've gotten the "at least you're still alive" type response. Yep. I'm alive. Clearly. Does that make my day to day issues irrelevant? Am I supposed to be positive and happy all the time because I'm alive? Where's that magic pill? I'd really like a prescription for those happy pills, please. Never mind the hair loss, weight gain, depression/mood swings, temperature regulation issues, ongoing fatigue ... I could go on for a while. But I'm alive, yay. Happy dance, anyone?
I sometimes want to tell people that I'll be positive tomorrow or in an hour, right this second I'm grumpy. I'm allowed to be, same as you are when you've had a bad day or are dealing with stress. My being grumpy doesn't warrant a pep talk every time, especially when I post on FB with a good dose of sarcasm and a winking emoticon.
Edited to add: I wouldn't tell a chemo patient venting about her lack of hair to look on the bright side and be happy she's alive, that seems insensitive and uncaring to me. Of course she's upset, that sucks. I'd listen as a friend and offer to help if I could or cheer her up. But I got that three times in one thread tonight - how am I different if it's all cancer?
Yep, I need a magic happy pill. Or maybe a correct thyroid medication dose ... hmm.]]>
With the work-up and training schedule, I was already somewhat used to him being gone or only seeing him for a couple hours before bed. The deployment switch flipped back to the ON position pretty well with that sort of training. Not so much, right now.
Red wine has antioxidant properties, doesn't it?]]>
My husband and I just had a conversation and it didn't really go as I'd hoped. He said he thought he was being emotionally supportive. I'd said I needed something entirely different from him and explained it as best I could ... "I'm confused," was the response.
Yeah, I'm sure he is. Crazytown, remember? Yes, he's been beyond supportive and I have to give him credit where credit is due. He's listened to every crazy thought in my head, even the ones that hurt, and held me as I've cried, sometimes for no reason at all. He's been accommodating and patient, staying by my side the whole time in the hospital and doing whatever I asked after we came home (well, except that honey-do list ... but, I digress). He's my strong, silent support and having him here was invaluable beyond words. I needed his strength and his love, especially once the waiting and accompanying numbness stopped and the real journey began.
And then he left. Again. I'm finding that I am beyond jealous that he gets to leave this mess and go back to work, to a busy life and routine. He gets to not deal with it up front and personally, he just has to wield off crazy late night emails from his wife and try to read between the lines in them. Because I'm sure that's easier, being gone. Not able to be here when your best friend needs you. Right? Real easy, yep. Must be.
The problem lies in the fact that he is, through and through, a man. A military one at that. He's really good at compartmentalizing things and just moving on to something else if he can't fix whatever is wrong. It's how he's always been and it's served him exceptionally well through his seven deployments and career. It's driving me absolutely batshit crazy right now.
When he left, the goodbye was short. It was a hug and a few kisses in the rental car parking lot, a 'call me when you get to the terminal' after the four hour drive, and then a three minute, composed and calm call from the plane. I hung up and burst into tears. Angry tears. It felt like he was leaving for a weekend trip or a normal deployment. I was hurt that he waited until he was on the plane to call me rather than call during the hours in the terminal or before/after visiting with his sister at the terminal (It felt like she was more important than me at that moment in time). I needed to hear him say he was sorry he had to leave, that it was hard to leave during all of this, that it sucked for him too. I needed him to hurt with me and instead all I got was my strong, silent type husband. Apparently my screwed up hormones expected him to be um, emotional? Because it's fair to expect him to be something totally different than his norm, right? Yet, I was angry and hurt that it seemed like business as usual for him to be leaving. I still am, truth be told.
The logical side of me is just shaking her head but she's locked in a little compartment right now, unable to take the forefront role. If I let her out for a few minutes she'll probably tell me that at the core of that anger is loneliness. We don't have kids. My routine is on hold right now because I don't know that I'm able to handle clients for work with everything else that's going on. I can't compartmentalize this and ignore it, I'm in it, every day. I'm the only one in it though, and I'd venture to guess that I'm kind of upset about that. I needed to hear from my best friend that I wasn't the only one hurting that he was leaving and I need him to tell me how he's feeling through all of this. I need him to open up some of those damn compartments to me, since he isn't here to sit on the couch and hold my hand and be all strong and silent-like. We're stuck with email and staticky phone calls until he gets home, which can't possibly be the same. That logical witch will probably also ask me if it's fair to expect him to let go of his coping mechanism, he's likely dealing with a whole bunch of stuff and needs to be able to lock emotional things away and do his job, right? Can't I be unselfish and just deal, keep a positive attitude? Semper Gumby, and all that? For once, I'm not sure I can, and that's driving me nuts too.
I don't know what the answer here is, really. I am sure he is confused, I sure as hell am.]]>
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?]]>
My surgery date is still most likely weeks away and I think I've made a mistake in letting myself visualize the comfort of actually having my husband home for it now that it's a likely possibility. I'm constantly craving that emotional support he provides over more than just email and the physical affection that comes with it. More than anything, I just want to lean on him, get a hug when I need it.
I don't typically let myself think of this sort of thing during deployments unless I'm having 'one of those days,' so it's weird for me to be dealing with this so intensely right now, mid-deployment. I get into my groove of daily routine and try not to miss him so much until bedtime, then get up and do it all over again. I've found that overly difficult the past few days and it's starting to wear on me. I actually took a day off today and stayed mostly on the couch. Hopefully tomorrow is better.]]>