Frustrated. Trying so hard not to be, but it’s impossible. In the grand scheme of things, it could be worse. Admittedly, some have it worse. But this is my struggle. My struggle right now and I have a right to be upset about it, don’t I?
I had the therapeutic dose (150) of radioactive iodine 60 hours ago. I’m 2 ½ days into a 5 day quarantine. I may be halfway through, but it feels like the further I get into it, the further the end moves away from me.
Typically I don’t mind being alone. I like solitude. But I like it on my terms. I hate being in this room by myself. I hate having to wear gloves every time I touch something. I hate the fact that my food has to be left on a tray in the hallway so I don’t interact with family and expose them to radiation. I hate having to wipe down every surface. I hate it all. I’m TVd out. I’m sick of my computer. I’m sick of waiting and expecting to hear from people more often. I realize people are busy and have their own things going on, but I really don’t feel like I have the support I need, aside from my immediate family that’s taking care of me. I barely get more than 5 words via text from people I expected more from. Maybe one phone call at the end of the day. What happened to showing you care for someone and checking on them more often? Especially in this circumstance. Going all day without anyone calling or talking to me, it sucks. Call me. Talk to me. Lighten my mood, make me laugh, give me strength. Because I don’t feel like I have any left. Maybe that’s the problem – people think I’m strong enough to deal with this. That it’s easy. That I don’t need the support. But I do. More than anything.
I’m bone-tired. Exhaustion like I’ve never known possible. But the more I sit around, the worse I feel. It doesn’t help that I’ve felt sick every single time I’ve eaten since I got the treatment. I feel like crap. I had such bad night sweats last night and this morning that I had to change my clothes twice. Night sweats cause aches for me, which means my fibro is flaring. I also got a migraine with lights today. The nasal spray med I take clogs my nose and makes me feel even more shitty, but it does get rid of the lights and keeps the pain at bay. But really, a migraine on top of everything I have going on right now? It’s not what I needed. At all.
I’m done. I’m SO done with all of this. I’m trying to stay positive but I just don’t know if I have it in me. I don’t want to be strong anymore. I shouldn’t have to be strong anymore. I can’t even write anymore through the tears. I just want them to stop. How do I make them stop?
I’m on the low iodine diet again. Round two. This time to prep for my therapeutic radioactive iodine treatment on April 10th. Last time was a diagnostic treatment, so this will be a much higher dose (4 vs. 150 or 175). I thought it would be easier this time, and honestly, it was for the first few days. But now, 10 days in, I’m over it. I’m at the point where I just may knock over a small child if they’re in the path of ice cream, pizza, ANYTHING that I can get my restricted, hungry hands on. I’m so not a diet girl. I eat fairly healthy to begin with – that’s easy for me. And some of the foods I am allowed to have, I would eat anyway and on a regular basis. But what I don’t like:
· Being told what I can and can’t have
· Eliminating dairy
· Not having condiments (bbq, ketchup, honey mustard)
· Lack of variety
· Planning snacks/meals each day
· Having enough food with me at all times that not only satisfy the diet, but my hunger and tastes as well
· Not looking forward to food – I love food and I love to eat, but not in this way
With a busy schedule, it’s nearly impossible to do this diet successfully.
It means having one large bag full of food in my car or at work at all times.
It means throwing half my lunch away sometimes because I just can’t stomach the egg white scramble that looked bad enough the night before.
It means dropping the non-dairy creamer under my car seat when I’ve pulled over to add my own cream to my coffee. Lots of fun, after I’ve already struggled with the baristas to make it black and leave room at the top. By the way, what is with the responses to that question? Blank, confused stares every single time. I can’t be the only person who asks for coffee that way.
Bottom line, it’s not that I even really WANT junk food. I only want it because I know I can’t have it.
It’s been exactly one year since my cell phone rang at work. April 4, 2012. I had a feeling it wouldn’t be good news so I snuck into an empty conference room. My doctor had reviewed my biopsy results and told me, “It’s very likely you have cancer.” It doesn’t matter what type of cancer you’re facing or what your prognosis is, hearing those words is terrifying. I remember feeling like the floor had crumbled below me and in an instant I was swimming in a thick fog of shock, fear, anger.
It’s incredible what one person can endure in a year. What one person can survive. How much, and how drastically, things can change. This has been the hardest year of my life. I’ve been tested in every facet possible. I’ve run the gamut of emotions, this rollercoaster of health and life almost too scary to find the strength to stay belted in. But I have. I’ve reached overwhelming lows but also remarkable highs. If you had asked me a year ago if I’d be where I am right now, I would have never guessed right. I’ve survived. I’ve grown. I’ve thrived, despite the toughest days I ever thought I’d face. I’m a better person now. And I wouldn’t trade where I am and what I’ve been through for anything. This is me – journey and all.
This past Tuesday morning (02.12.13) was one of the most surreal mornings of my life. How is it possible that an 11½ year relationship, and more than 5 years of marriage can boil down to the two of us sitting in a small office on the 7th floor of a stone city building…the room filled with deafening silence punctuated only by us taking turns answering a mediator’s questions about our life and finances, and determining who gets what? No matter what brings a couple to this point or how positive you feel about the future, ending a marriage and closing a large chapter of your life carries a certain heaviness with it, laden with sadness and an overwhelming stress.
I came across this image and quote earlier this week and it still resonates with me. Tip toe if you must, but take the step.
I fully intended on documenting each day of the nuclear scan process. Obviously that didn’t happen. The words I should have been spilling on the ‘page’ instead ran rampant through my head and I just could not bring myself to type them out. The Thyrogen injections I received on Monday (01.14.13) and Tuesday (01.15.13) of scan week devastated my body. The drug is intended to ‘activate’ any remaining thyroid cells in your body, but bottom line, it makes your body feel like you’re not on your thyroid medication anymore. And since your thyroid regulates everything in your body, hello havoc. By the end of Monday I could barely lift my limbs or hold my head up on my own. My own body weight felt like it had multiplied and the heaviness just overwhelmed my every cell. Tuesday after the second shot I felt about the same and no amount of effort could lighten the dark circles under my eyes. Wednesday I received the ‘diagnostic,’ smaller dose of radioactive iodine. The tech brought the pill to me in this…
It makes you question how it’s possibly okay to ingest anything from that lead container, huh? I washed the pill down with a cup of cold water, but no amount of water could dull the bitter, metallic taste that enveloped my mouth instantly. The pill burned in my chest as I felt it travel down my esophagus. I imagined it hitting my stomach and breaking up, then seeking out and traveling to any thyroid cells to do its job. As my Stepdad drove me back home, I felt fine initially but about 2 miles from home I started questioning whether I should have had more than just blueberries in my stomach to withstand the radiation. I’ve felt suddenly nauseous before, but never anything like this. It hit me so fast I barely had time to react. I was sweaty, heart pounding, with burning still in my chest and choking back the feeling of having to vomit. I fumbled to put the window down hoping the cold winter air would right my system. The sickness was coupled with immense fear – fear of the countless things you normally don’t have to worry about when you’re about to get sick. I’d be throwing up pure radiation. What would it do to my body as it left? Would hazmat have to be called? Would I have to go back to the hospital later on for another radiation dose? Luckily I didn’t have to find out.
About an hour later I was ready for my first greasy, cheesy, salty, fatty, delicious meal in more than 2 weeks. Greek pizza. I had planned and looked forward to this meal since the start of the low-iodine diet and my eyes were bigger than my stomach as they say. My body just couldn’t handle that type of food right away after eating so ‘clean’ for weeks.
The good news? Quarantine was only 48 hours, so I had to be ‘on my own’ and with restrictions for a much shorter duration than I had initially been told. During quarantine, I honestly felt like I had the plague. You must be 6 feet away from people at all times. Any communal things you touch must be with gloves. Flush twice. Shower multiple times a day. Every surface you touch must be washed down after. It’s a very surreal situation to experience.
My Mom brought me every meal and sat with me a few times to chat and watch TV, and I was able to talk on the phone. But it was damn lonely. You’d think it’d be great to have time to yourself to watch movies, catch up on your DVR, and just rest on your own. Not so much. It wasn’t my choice to be in this position and I was being told I couldn’t do anything else. That changes the game entirely. And me no likey.
So true. My view? It’s important not to overlook life’s smaller joys while searching for the larger, more significant ones. In reality, they’re all significant. And there is so much good to come.
I have the flu. I kind of predicted it, what with my being in the hospital and doctors’ offices on the daily coupled with my lack of immunity. How could I possibly avoid it?
My body hates me right now - it’s been so battered this year. I got a flu shot, I wash my hands constantly, and I take care of myself as best I can. But my immune system is so compromised from stress and the trauma it’s been through this year and especially recently, that I’d be stupid to expect I could avoid the flu.
It hit me out of nowhere like a silent train. I saw my doctor within the first 24 hours and got Tamiflu, and I think it’s actually helping. The doctor says Tamiflu can help lessen the intensity of the flu if you get it in your system within the first 48 hours. And also having had the flu shot, though not protected against this strain, should do the same. I’m all for shorter duration and less intense symptoms.
I just want this over with. The flu + fibro = misery. Two stairs and I’m out of breath. I finally showered last night and felt like I had run a marathon. I’m just bone-tired. Every limb feels heavy, my heart’s racing, I’m congested, my throat kills, my glands are huge, my head is pounding, every muscle and joint aches (even my fingers hurt) like I’ve been brutally beaten. I sound like an old lady trying to move around - moaning and groaning with every move, it’s so painful. This morning I finally felt a little better. Here’s to hoping that continues.
A special little boy in my life turns 1 today, and that’s cause to celebrate. My nephew and favorite little man, Russell Alexander. This moment was captured when he was 10 days old.
This boy. Oh, this boy. He has brought immense beauty and love into this world, into our family, into my life. It’s no secret that this year has been the most difficult for me in so many ways, but this bundle of light has pulled me through every low point and been the cause of so many incredible highs.
When I told his parents I had cancer, he giggled and made me laugh too. When I told his parents my marriage was over, this baby who had not sat still in 6 months, crawled into my lap and pressed his tiny face to mine. He sat there, motionless, cheek to cheek with me as my tears streamed down both of our faces. It was one of the most poignant, meaningful moments of my life. His love for others is palpable and his little body can barely contain his heart. He is already so in tune with those around him.
He’s my brother’s son and his mom is my sister-in-law who just so happens to be my best friend of 17+ years. He’s the luckiest boy to have them as parents and I have to say, he’s definitely the perfect mix of both of their personalities.
His laugh is infectious and used awesomely at the most inappropriate times.
His spirit, strong.
His love, unconditional.
His humor, already honed.
His inner beauty, evident.
His curiosity and propensity for trouble, growing by the day.
His comedic timing, impeccable.
He is pure light, and as bittersweet as it is to watch him grow so fast, I’m beyond proud of the little boy he’s quickly becoming. Every milestone, celebrated. Every moment with him, burned in my memory and stored in the happiest sectors of my heart.
We have the type of bond where I walk in the room and he just beams at me with a look of “I know we’re gonna cause trouble together. Let’s do this.” Right now he thinks I’m a total goofball who gets ‘yelled’ at by his Mama for cursing far too often in his presence. I want nothing more than to grow and nurture what we have, and for us to stay close throughout his life. I want to be the Auntie he runs to for advice and the one he wants to hang out with just for fun.
Happy Birthday Sweet Boy. In your first year alone, you’ve saved and inspired your Auntie in ways you may never fully understand. You’ve kept me laughing like no other, and made me smile like a fool when I’ve thought it impossible to do. My love for you is boundless and you’re the best gift we could have ever been given. I love you to pieces. Xoxo
Officially addicted to yogurt raisins. I’m a sweets girl. I crave chocolate after every.single.meal - scratch that, I mean all day every day. But when you’re on this low iodine diet, sweet options are pretty much non-existent. I’ve found that yogurt raisins are about the only sweet allowed that satisfies my sweet tooth. I may or may not have bought 4 bags at the store yesterday. And I may or may not have eaten a whole bag in less than 24 hours. I know, I know. But when you find something that tastes good and feels like a ‘treat,’ you cling to it and savor every last bite. I never eat raisins, but they’re my new sidekicks for now. Maybe I should make some capes for them, no?
This diet is hard. It’s really freakin’ hard. But it’s a necessary evil. Trust me, I’ve had my moments of complaining about it and a near-breakdown involving tears in the middle of Stop & Shop on the 2nd day - I was starving, had a killer headache, forgot my lunch at home and couldn’t figure out what I could/couldn’t eat. I am not a girl who can miss a meal or snacks. I eat every 2-3 hours and need my food, so this particular day was absolute hell to say the least. But 2 weeks in and I’m managing just fine. I even ordered pizza for all of my family and friends last weekend and ate brussells sprouts while they enjoyed the cheesy goodness. I’m tough and I’ll take this on because I know I need to. But it’s certainly not easy. I’m always on the go so my main issue is making sure I have enough food packed and with me for the day to cover breakfast, lunch, dinner, and snacks so I don’t starve or worse - break down and eat something not allowed on the diet out of pure starvation and lack of preparation.
Some other issues:
Vegetarian Options/Protein Sources - Some meats are allowed on the low iodine diet, but I’m a vegetarian. Typically my protein sources consist of protein bars, dairy, seafood, veggie burgers or similar products, grains, and nuts/nut butters. But absolutely none of those items are allowed except for very limited grains and any unsalted nuts/nut butters. My concern going into this was making sure I am getting the proper nutrients. I want to be as strong and healthy as I can be before treatment. As of right now, I think I managed this okay, but the two things lacking big time are variety and flavor.
Variety - You can eat all the fruit you want, all the non-dark/leafy vegetables you want. But everything else is limited so there’s a real lack of variety. No dairy, no seafood, no grains (very limited bread, no rice), no bakery products, etc. The list seems endless. I don’t care how prepared you are before you start the diet, you can’t be completely prepared for this, especially because salt is in everything. You also blow through food quickly and lose your taste for things just as fast.
Flavor - I’m all about flavor. I usually add extra spices or extra condiments to everything I eat. That’s a major no-no on this diet. For example, I can have a potato but can’t put butter, sour cream, or cheese on it. A plain potato? No thanks. Just about every recipe with approved ingredients contains olive oil, garlic, and/or basil - all things I love normally. But having every recipe made with them gets old pretty quickly.
Most days I manage fine but others I feel like a crazy person - drooling at every vending machine I walk by, sniffing out fries in a crowded building, even smelling donuts when they’re nowhere around. The funniest part about this? I eat pretty damn healthy anyway - everything in moderation with treats occasionally. The majority of my ‘lifestyle’ (I hate the word ’diet’) revolves around low-fat, low-sugar options, and fresh produce. But being told I can’t have something, being told to avoid something - makes you want it that much more.
I can stop this diet in 2 days - that’s less than 48 hours. You better believe I’ve already put my order in with family for a greek pizza from my favorite local place for a late lunch after my first dose of radioactive iodine, and a sundae for dinner from a local creamery. I’ll probably be sick as a dog, but I’ll love every minute of being a complete glutton that day. I don’t think I’ve ever been more excited for food - ever.