So it’s been a bit since I’ve been able to write. Things have been continuing to move along whether I’ve been ready for it or not. My week of isolation is over as is my radioiodide treatment. The horrid diet is done as well. Technically, as far as I am aware I’m done with my treatment. The last pet scan was on the 17th. I was told it would be 3-5 days before I got any results. I haven’t heard anything from the doctor. I am taking this as no news is good news, assuming that they would call if there was anything abnormal. I need to call them but I’m scared to. I mean technically as far as I am aware I’m done with everything. But I have so many emotions about everything I’ve experienced. I just don’t know what to do with everything. I’ve started the Sythroid finally. It’s getting in my system and it’s helping me feel better but I’m not quite 100% yet. Still get tired pretty easily and still having some brain fog but it’s so much better than it was. Things are improving but I just don’t know how to process all of this. I still feel emotional if I think about going into surgery. How does one deal with spending so many months on high alert? It feels like it’s just been one thing after another. We took a hard hit this weekend. Our much loved kitty Ashke went over the rainbow bridge at the ripe age of 14. It was really unexpected. He’d been kinda sick and not himself. But my wife took him to the vet Friday. We thought maybe he had some upper respiratory crud. Wrong wrong so wrong. He had a tumor in his lungs. There was nothing we or anyone else could do. And now he’s gone. And I hate it. Almost exactly a year since we lost his brother. God it sucks. I just don’t know what to do with all of this emotion. I think that i will probably keep writing for a bit yet. I have to do something with all these emotions. I just don’t know how to process all of this.
I feel as though today is frustrating. It has not been a fun couple of days being hypothyroid. Not that it’s ever particularly fun, but it’s been extra hard these last few days. I’m on antibiotics for a possible sinus infection that never really went away this winter and I feel like I’ve been snoring a lot and not sleeping well and feeling really cloggy. And my wife thought it was the being hypo just that but I really felt like it was more than that so when I went to yet another doctors appointment this week I asked them about it and she said my nose looked pretty rough so add another pill to the mix. And I don’t know if it was that or being hypo or what but I had to leave work on Friday I was so brain fogged I just couldn’t concentrate. And I realized that I had been doing something fairly important and I didn’t really remember doing it. So that’s no good and I told my boss that I didn’t feel right and I’d like to go home and my coworker told me she said you don’t look good and I said I really don’t feel good today. So I was supposed to work the weekend and that didn’t end up happening either they actually were able to find someone which was nothing short of miraculous considering when I looked no one was willing to speak up. So yesterday I tried to rest a lot. We mostly just sat on the couch and watched movies. Our brand-new dryer is not working right so we are going to have to call a repair man hopefully they can get it done before I have to explain yes go fix it and I’m gonna stand on the other side of the room so that I can see but you aren’t exposed to my radiation because that’s gonna be fun.
I feel like the title of my blog today reflects dealing with my friends and family lately. Because I am frequently the person who is there for people. I am the person who people often go to for advice or for a shoulder or for whatever and I’ve noticed that it has happened less since I’ve been sick, people trying not to stress me out. Which is both good and bad because in some ways yes less stress but in other ways it makes me worry because everything makes me worry about people and I don’t want to let anyone down. But lately I feel like people are struggling with dealing with me being sick. Not like they resent me or they don’t understand or something I don’t know, something like that but more like they’re scared and they don’t know how to handle it or what to do. And normally this would be something that they’d come to me and be like I don’t know how to handle this I don’t know how to deal with this or what to do with this can you help me? And it sucks because in this case the answer is no because this is my illness and I don’t know what to do. I have a couple of people who have said that they feel like they’ve been shitty friends because they don’t talk to me about my illness because they don’t know what to say or because they’re scared and I assured them or tried to that I don’t feel like they are crappy friends because they haven’t talked to me about it. Because after a certain point what do you say? How are you feeling? Tired, shitty, bored, scared, exhausted, impatient, frustrated, all the things and I still have cancer by the way. And in some cases I know all it does is make people feel helpless because they want to help and what can they do? You know people say if there’s anything you need and I know we have people who mean it and if they were here especially some family members, if they were closer they would be here all the time and be on my butt and be you know wanting to know what was going on all the time and in some ways I appreciate that they are not closer physically because some days I just can’t take that. Some days everyone grates on me no matter how much I love them because I just want it all to go away. I feel like people are expecting me to have this huge sense of release or relief when the treatment or radiation or whatever you want to call it is over and I’m not sure that I’m going to feel like that. Because what I really want to hear is that the cancer is all gone and I don’t think that they get to say that my understanding is until I’ve had five years of clear scans. Five years is a very long time. And I think what they’ll probably be able to tell me is that my cancer is in remission which would be fantastic but isn’t really what I want to hear I guess. I’m trying to figure out something to do to make a marker or a I don’t know like a touchstone in my life to symbolize before and after or something. I’m looking at tattoos, which is something I have always wanted and I don’t have any and if ever there was a life event that called for a tattoo I think this could be it but I can’t find anything that I really like because a lot of the designs are very very feminine which there’s nothing wrong with that. However it’s not very me it’s very hearts and butterflies because butterflies are one of the symbols of thyroid cancer which is totally understandable but I don’t want a butterfly. Or heart or something like that. I have some song lyrics that I think I’d like to include somehow but I’m not sure and I just don’t know if there’s a way to toughen up a butterfly. Especially since that’s not what happened my butterfly isn’t tougher it’s simply gone and I wouldn’t want something like a bloody something or you know what I mean there’s so many different styles of tattoos and things like that and I’m just searching right now. I’ve jokingly told our friends that I want like a party or a trip or something after everything is over to celebrate and be able to relax or something like that especially with this diet and no chocolate, which is just damn sacrilege if you ask me. What I would really love to do and we don’t really have the money for right now but is to maybe kind of almost like redo our honeymoon. It’s a lot colder up north now than it was in November and I wouldn’t want to go right now but when we went on our honeymoon the cancer, it was there and it sucked and we both knew that I would go back to work for like a week and a half and then it was time for surgery and so it wasn’t as relaxing as I would’ve liked, I guess. Our wedding was beautiful and amazing and wonderful and the honeymoon was amazing and wonderful but you know there was almost this kind of shadow in the background of our honeymoon. I think probably because we had more time to think about it. The wedding day shone so brightly and was filled with people we loved and so busy that you can’t hardly breathe and just insanity and awesomeness. But once we were away from everyone it was easy for your thoughts to wander to sadder things whether I wanted them to or not. So I guess maybe I’d like a honeymoon part two minus the cancer that would be nice. I’m not sure where end today’s blog I guess if you are a friend or family member of mine who reads this please know that I appreciate everything that you do and have done for me. I love you all so much and I could never begin to say thank you for everything that you’ve done for us. ❤
Crappy last few days. Crappy week really. Some days it seems like I can’t get any more tired. How can I be more tired than this? When it feels like all my energy goes to keeping my eyes open. To say that I am not good at allowing others to take care of me would be a rather large understatement. I see myself as a care giver. It is one of the only things I feel like I am any good at. When I cannot do it for myself, much less other people I get out of sorts. A few years ago when I broke my ankle and spent a number of weeks in a cast I was very angry. And upset. I cried a lot. I didn’t know what to do. That situation was different from this. Physically other than my leg I was fine and it was so irritating that it restricted me so much. Having basic sanitation taken away from you sucks. I couldn’t bathe normally and going to the bathroom wasn’t an easy task. And it all happened in a finger snap when my knee gave out. I didn’t even know I had hurt my ankle at first. Thought it maybe got a little twisted when I fell. Nope, busted. Damn. This whole situation is different and in some ways the same. I don’t know that I am any better patient this time around. Better prepared maybe, sort of.
I don’t think that anyone can ever really be prepared for the nasty C word to come out of their doctor’s mouth. Cancer. I knew, that it wasn’t a good sign that day when the Doctor himself got on the phone. Nurses and secretaries and interns can tell you that the results were normal. Maybe that’s part of why they make the big bucks, Doctors. Cause they don’t get to walk away from the hard stuff. They have to steel themselves through the tears and whatever else and try to get you to hear the, “yes but, this is what we’re going to do. Or this is where we go from here.” Once I cried my first and maybe second bought of tears that day, I had to do that. Calling my friends and family to give that news sucked almost as much as hearing it myself. Knowing that I caused people I love to cry that night was awful. And it’s not like there was anything I could do about it. There’s no good way to soften that blow. So many people. The first reaction is then, “ok what’s the plan. Or is there a plan? Or at least you have a plan now.”
There is a list of phrases that I would like to recommend that you don’t say to anyone frankly but specifically to anyone dealing with illness:
#1 At least it’s not ________
#2 It could be worse.
Worse than what? Oh I could have a shittier thing destroying my world right now? Gee that never occurred to me.
# 3 If you’re going to have cancer, this is the kind you want.
Cause I had so much choice in the matter. Not to mention, no! No one wants any kind! Every person who said this to me was mentally punched in the face.
#4 My family member/co worker/ etc has/had a similar/the same condition and they’re fine now.
This one happened a lot. And out of all of the things people said only 3 times was it actually my same condition. And those people actually had helpful, useful things to say because they didn’t offer me it’ll all be ok platitudes.
#5 You will/you need to just kick its ass or the alternative calm version which is “it’ll all be ok”
These are attempts at being encouraging or supportive. These bothered me because you can’t guarantee for me that it’ll all be ok, I really wish you could. And the ass kicking one pissed me off repeatedly because firstly no one ever said I wasn’t going to fight and fight hard, this is my life we are talking about here. But, that being said there’s no ass to be kicked. It’s sort of more like preparing for a battle but it’s going on inside your body. It’s a scary and complicated process, which brings me to the last phrase (at current), which is
#6 At least you have a plan now/ you know what to expect
What? Having a care plan is a tenuous process that involves a lot of testing and waiting and balls being dropped and fragile dr ego and bullshit I have recently discovered. You must be your number one advocate.
You know what to expect. No one knows what to expect from any kind of sickness or illness like this. No amount of reading or talking to people could prepare me for this. I looked up being hypo because I knew that I would have to be as part of the treatment. My wife looked into it. We have a number of friends and family who are medical professionals who put considerable time and effort into helping and researching and finding out whatever I wanted or needed to know. Nothing prepared me for this level of exhaustion effort. There are good days and bad days just like with most things but right now, I am struggling through brain fog to spell words right and trying to beat the exhaustion that is making my hands go slower and slower. Earlier this evening I broke. I cried all over my wife’s shirt because I’m just so frustrated and tired. And yeah I knew this was coming but there is only so much planning you can do for when exhaustion meets depression and illness in a huge trifecta of crap. I am lucky. I am not a lone. There is literally someone here to hold my hand if I need it. Today I did. I feel like the fog has stolen my point away again as it has done so in the past and probably will again. Planning and coping I guess. We do all we can. But you fight, the exhaustion, the indifference, the everything because it’s my life.
Today has been really rough. I knew it wasn’t going to be a great day to start with but it just keeps sucking. Yesterday I was home sick from work. I’m not sure if I’m just super hypo or sick or both. The actual flu and some nasty upper respiratory stuff is going around. So it’s hard to say. But I forgot my father was going to have knee surgery. Not that I can go visit if I’m sick but I feel like a failure as a kid cause I forgot. Might have something to do with why my sister was trying to get a hold of me last night but she didn’t tell me. And my mom slipped and fell and pulled her hamstring so she couldn’t be at the hospital with my father. And the drs changed stuff up on me again. So yesterday I got a call saying that the nuc med doctor decided to accept my numbers as they were rather than make me continue to wait or go for another blood test. So they moved quickly and wanted me to come in today to take the tracer dose and Friday come in for the scan. I said yes because they don’t really give you a lot of choice. So in this morning to the nuc med dept. Passed a room where I’m pretty sure I had an x ray done when I broke my ankle. Down a long depressing looking hallway to sign in and wait. It wasn’t long. They came and took me back and I had to sit in then kind of weird wide armed chair that they normally use for blood draws. Signed the paperwork to confirm that no, I am not pregnant and away we go.
It doesn’t seem that imposing until you realize that in that container the height of a juice glass and the thickness of a softball is just a small glass vial the size of an insulin vial with one small gray capsule in it. Me and the capsule and a dixie cup full of water and it’s down the hatch. After that I had planned to go to work for a normal day but the tech who gave me the pill says “ok treat it like you have the flu today” Wait what? In my profession and most medical professionals having the flu is a big deal. You stay away from people, drink lots of fluids, can’t work with the public, etc. If I am radioactive there is no minium safe distance at work. We are in too tight of a space. I had checked with them repeatedly that I could work while I had the tracer dose for the scan and they said no problem and now this. Most of the people i work with are not of child bearing age but there are some younger girls later in the day. So i talked to my boss and he said no, if you have the “flu” you go home. So a lost day of work. I called the woman I had spoken with before and she said that it was a miscommunication and that what they mean by treat it like the flu is to have good hand hygiene. Wtf? That is not the same thing at all. I’m so frustrated. Like it’s my fault. Tell your tech to keep his mouth shut if he’s going to cause me a lost days pay.
So I go home. I’ll work on some work paperwork and stuff since I can’t be there. Oh nope. In the grandness of this day my work laptop won’t charge. I think the charger is bunk, we don’t have another that will fit to reassure me of course. So get the old one all booted up and finally going and start to fill things out, nope. Have to stop. Have to wait 1-3 days for them to verify I’m who i am. Oh and in the middle of all this fun i managed to spill the glass of water that I need to be drinking tonight to remove the radiation all over my phone and 3ds and some important papers too. And then someone from the other Drs office makes my wife cry. And all I want is pizza to make me feel better and I can’t have it. And so today has been pretty shit. I’m considering bed already and just hitting reboot and saying forget it. My wife made tasty food but sadly the day has just moved too far into the crap season to be saved by dinner. I think I’m just calling today a wash.
So this morning was my second blood test. Last week my numbers were too low, not high enough to appear on the scan, and so everything had to be pushed back a week which blows, I hate waiting, particularly for this stuff. So my numbers. I don’t fully understand what all of it means. I imagine I will likely be an expert by the time this is all done but right now it’s kind of confusing. I have a friend who was born without a thyroid gland, I consider her to be a super expert on the subject and sometime when I don’t feel like a brainless hypo zombie I will probably have her explain it to me in more depth. So I am definitely feeling hypo. That blows. I imagine that everyone’s symptoms are a little different but mostly I am frequently cold, which is an odd feeling as I am usually a person who runs warm. I am exhausted, super fun when coupled with my normal crappy ability to sleep. I feel foggy and out of it like my brain isn’t clicking along like usual. The last couple of days I have been feeling sore and my body feels sluggish like it’s not doing what I want at the rate at which I am asking it to do it. This is not a good feeling especially at work where I have to go fast and the last few days we’ve been short handed so I need to go faster. And to enter the TMI zone (if you don’t want to know stop reading now) I’m slightly constipated. Not a normal thing for me at all. Ugh. And to top it all off I am irritated and anxious and HUNGRY!!!
Oh low iodine diet, how I hate you, let me count the ways. So we started our diet on Monday. I am saying we because my lovely wife, by her own choice has decided to do the diet with me which mostly makes sense because let’s not prepare two different meals. Yesterday was Valentine’s Day. After working for 8 hours I didn’t want to prepare anything much less a meal from scratch but I did it. It was tasty, pasta with homemade red sauce. But no bread. 😦 and no cheese 😦 and no chocolate for dessert. 😦 I hate this soooo much. Particularly for the no dairy. I’m not a big milk drinker we usually have almond milk but even that we’ve had to switch because it has sea salt in it which I cannot have. Ughhhhh. Do you have any idea how many fucking things have sea salt in them? Sooo many things. And cheese. I love cheese. I am currently cooking potatoes to be turned into a scramble with egg whites and green peppers. You know what would make it better? Cheese! I feel like my coworkers are trying to be supportive of my diet when they tell me that my lunch looks good but I also feel they are full of it. That’s right, you tell me my apples on rice cakes looks good while you eat that slice of pizza, you fucker. Sorry. I’m hungry. I know that this is just the first week and that the diet will get easier and us more prepared as time goes on but I’m so frustrated!! If I hadn’t been called into work so much this weekend I wanted to make some stuff ahead of time to make this easier but that didn’t end up happening. Pause. I have now eaten. Feeling a little more with it. Sort of. I’m reaching a point where I’m so tired not much makes sense. I could rant for a long time. The only other thing that I wanted to talk about is endless drs voicemails. So blood work today and then I got a voicemail from my endocrinologist’s office. It’s super long and was left while I was working. I really hate that. Because I really need to ask questions and I’d like to talk to them but it sucks. I don’t have time to call back. I need to be able to wrap my head around everything that is going on and it just makes it hard when I work the same hours as the drs.
A few close friends of mine have what the medical community calls “invisible illnesses”. Heart, hormone conditions, vitamin deficiencies, gastrointestinal stuff that you cannot see simply by looking at someone. These people often have to live by the spoon analogy, which I’m not going to go into here but if you’re curious and haven’t heard of it googling spoons and chronic illness should he sufficient to find the explaination. It sucks because these are people I love and care about who are frequently and repeatedly not given a fair shake because people don’t know any better. My frustration today stems from interacting with people who do know better and are still either do not care enough or simply do not give enough of a shit to make any kind of accommodation for people who might be a few spoons down.
I have what is to me at least, a very visible scar on my neck that was not there less than 3 months ago. When I first went back to work and out into the world i tried to hide it more but it was just more time and effort than i am willing to put in on a daily basis. Due to the nature of my job in the medical field and their own nosiness my co workers know a lot about my condition and treatment. Lots of details and information shared but also apparently not a lot of shits given. Not really at least. For maybe the first two weeks after I was back I was given a little extra consideration and for the first 6 weeks i couldn’t lift anything heavy because they didn’t want to take any chance of me straining my neck. Apparently now despite the visible sign of my surgery less than 3 months old and the details I have to share in preparation for the upcoming ablation I am supposed to be fine. This pisses me off for a number of reasons more personal to my job having to do with people who never pull their weight. But also on several levels having to do with illness. Over the past couple of months I have been sick several times and had to miss days. It’s unfortunate and not what I want but it seems to me at least that would be something normal or even expected since they removed an organ from my body. And not just any organ but one that controls a lot of my hormone levels. Apparently this seems to be unacceptable to my co workers. A woman I work with does not like to call in sick. We have paid sick days so she would not lose anything to not be in if she’s miserable which this week you could see she was. After being hacked at and coughed on all week long i woke up Friday morning to my throat feeling like a cheese grater had run along the inside of it. So not wanting to potentially expose anyone else to this gross feeling i stayed home. I found out later that this woman who is likely a good portion of the reason that I got sick in the first place, felt the need to comment about my absence and how she was sick all week and hadn’t called off. She is a very two faced person and this behavior doesn’t surprise me. But it irritates me for a lot of reasons. I have had positions where you don’t get sick days. Where you better have a drs note no matter how miserable you are or sometimes you have to come to work unless you’re pretty much non stop puking. This is not one of those jobs. We try to be understanding and make accommodations because people get sick. Especially this time of year. And if she truly felt that she could work through her illness, that’s fine, good for her. I don’t believe that there are truly stereotypical cancer cases, I think everyone is different and everyone’s symptoms and abilities are different at different stages in their care. So while I might look and act great most of the time and I am certain in comparison to some cancer patients I look amazing, I am still a cancer patient with ongoing treatment.
I feel as though I’ve lost the thread a bit here. Maybe there wasn’t much of one to begin with. Regardless I am angry. Maybe it all goes back to those spoons. I don’t have as many as I used to. I am hopeful that when my main treatment is finished that I might get a few back. But I guess I feel like everyone regardless of how many you’ve got up your sleeve, everyone could stand to be a little bit kinder. Because those spoons can be precious.
So this used to be a blog dedicated to cooking, sort of. It was mostly a way when we lived in the South for me to try and get out of my own head and not feel quite so isolated. Being six hundred miles away from nearly everything and everyone you know and love can do that to you. It was sort of fun. But I’m not sure that I am a creative enough cook to have a followable blog. I am certainly not dedicated enough for the endless pictures and wordy snippets that I always had to scroll through when searching online for a recipe. Your life is interesting to a point but only in so far as it relates to the food. Don’t tell me a story just to tell it, there are writing blogs if you yearn to tell a tale. Sorry if that’s a little harsh and sarcastic, I have an amazing friend who is trying to find her way back to writing and it’s amazing. Hers are stories however that are in the guise of stories, not stories in the guise of recipes or vice versa. So once again I apologize if this is rough edged, I am finding myself a little rubbed raw lately. The last six months or so have been, well I guess I’m not sure that I could find one word to describe it all. Amazing, overwhelming, painful, terrifying, joyful and awful all frequently at the same time. In September, I believe it was specifically September 12, 2016, I was diagnosed with thyroid cancer. A lot has happened over the last few months and I just need a place to put some of my thoughts. Some days it seems like there are so many and my head is so full that they all just spill over and usually out of my eyeballs in the form of tears. I am so tired of crying all the time. So I don’t know if this is particularly productive or if it will make a difference but what the hell.
So, the big C. So much fear with one word. Cancer. Six letters of pain. It has been awful. These last few months. In a time that should have been super joyful as my wife and I just finally got married after nearly 15 years together there was a shadow lurker who was most certainly not invited but came anyway. We were so close when we found out that we just didn’t want to put it off. We had been waiting so long. It was an amazing wonderful day and maybe sometime I’ll talk about it but not right now. Suffice it to say we did not let it ruin our day. Though the day may have been a bit more emotional for everyone who knew about my diagnosis. I had surgery about two weeks after the wedding to remove my thyroid gland and some of my lymph nodes in order for them to remove the nodule and most, if not all of the cancer. It was the day before thanksgiving. It all went well. It was terrifying. All I wanted to do was scream and cry like a kid but I sort of locked that part of myself away because as much as I wanted to do that it wouldn’t make any difference in my illness, but surgery would. All the drs and nurses were relatively good. But hospitals are not very restful places so I was glad to go home. Our friends came in shifts to bring us thanksgiving dinner and to be able to see with their own eyes that I was exhausted but ok. It was adorable and touching. There have been high points. Our one friend brought me flowers, cheesecake and whiskey after we found out. Which I thought was amazing and adorable and funny. I guess all this is sort of a summary of the last few months. I might go back and talk about some of those days at some point. I’m not sure. It depends on what I need I guess. That sort of brings us to the right now. Right now I am off my thyroid meds as I wait for my hormone levels to be high enough for them to do the preliminary scan and this weekend we are going to start the diet to prepare for the ablation (r.e. radiation). It’s not like the chemo and radation you see in the movies or on tv. Mine should be shorter and not so intense, at least that is how it appears and what i am hoping for. I had a blood test this week that didn’t have the answers that we needed so basically every thing has been pushed back a week. I hate waiting. Waiting is the suck. Some days the tension from all of it makes it hard to put one foot in front of the other. This is where a lot of people would place some trite “just keep swimming” crap. I am trying to keep walking. But sometimes i have to hit pause and regroup. Pause.