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This journal is now friends only

I am not particularly happy about this decision, but due to some recent events, I've decided to make my journal friends-only from this point on.

Obviously, if you are already a friend on this journal, this doesn't matter a bit (unless you aren't logged in, of course).

If you have an interest in following my journal but aren't on my friends list, please comment below and I will add you so that you may see my entries. A few entries are public - some of my works for therealljidol, a few pictures, some music reviews, and things that promote disability awareness - but otherwise, I keep most things under a tight watch here. Too many creepers...

But if you want to be a legit creeper, just leave a comment, and I'm sure we can work out something. ;)

The Farewell Post

It's been six weeks, but aside from a few comments I've left and a few messages I've received, I don't think 1)anyone has noticed my absence and 2)I, to be fair, haven't been around to read much. Apparently, LJ really is dropping off into the abyss, though Facebook seems so impersonal, Google+ is too flawed, and ello is kind of a horrid mess. I miss the old days here - where thoughts mattered and discussions occurred. But for that to happen, people - including myself - have to be around. They have to care. And once LJ Idol wraps this final season, I predict that even fewer people will be here as well.

But while I can be here, for those who are still here, I want to update briefly, and give thanks. This may be my last LJ post. It may not be. But if it is - and I predict it will be, which is why I will make it public - I want it to be informative and then end on a very positive note.

Updates:
-After my absorption study didn't go as planned at Hopkins, my endocrinologist said that he didn't know what to do with me but give me a high dose of oral medication. Since I don't fully absorb oral medication, I left his practice. Pushing 900 mcg of Synthroid on me won't help if only 45 mcg (if even that) absorbs. And I've ended up back where I was - in Westminster - at the same practice I went to in 2009. I'm with a new endo now - my fourth since 2012 - and he has been pretty decent thus far. I'm still the never-ending mystery, and there are things he won't try because they could damage my health, but he's been proactive and has fought for me. I'll stay with him unless something goes drastically wrong while I'm under his care, or until the end. He also explained a new problem to me - vision loss. I've lost my peripheral vision completely. There are no thyroid hormones going to my brain, so my pituitary gland is freaking out. This is causing pressure against my optic nerves, meaning the loss of vision. I'm now supposed to wear glasses 24/7, and have been told not to drive. I'll drive short distances when I'm not dizzy, but I've lost a lot of freedom in the past four to six weeks. The next paragraph will explain why a bit more.

-On November 4th, I celebrated one year of thyroidectomy surgery - No Thyroid Day. Of course, that day started to lead toward my demise, but that day this year, I went to Barnes & Noble to work on my NaNoWriMo novel and buy a few books. While there, I received a phone call. After several appeals and three months, my insurance company - though they have denied almost everything else before and after this - approved IM injections of Synthroid. I had enough doctors and enough evidence from the hospital visits to show that the only way I could absorb Synthroid was either IV or IM. Therefore, I was approved for a 90-day supply. I sat on the floor in Barnes & Noble and cried. It wouldn't save my life, but it would prolong it. More than a year! I was given hope. Two days later, I was shown by a nurse how to give myself the injections. The next day, I gave myself the injection - and started bleeding from my nose. This led to profuse bleeding from other places I'll refrain from mentioning, and I went to the hospital. Since then, I have been unable to walk without a walker - my right hip, for whatever reason, started to ache and has never recovered - and despite the fact I HATE painkillers, I now need Vicodin just to walk or sit upright. But we tried. And we're going to try again, because...

-I fell into another coma a few days ago. I was unconscious twice during this past hospital stay - when I was brought in and admitted, and then, in the middle of the night. Toby was with me in the middle of the night, as my parents had James, and all I recall is saying, "Toby, I can't breathe." The next thing I knew, I was in a different hospital room, unable to speak, and confused. Apparently, my body couldn't handle how high my TSH was and how low my T4 was (non-existent, said the ER doc - below .1, and without T4, the body just stops). My blood oxygen was 67%. My heart wasn't working. The crash cart was there. Toby stood in a room with those ten rapid response doctors and watched them bring me back. But in the end, before I was sent home, I was told that at this stage, not much can be done. I don't absorb oral medication and the IM didn't work. The last option - a port or PiCC - requires surgical clearance and a lot of upkeep IF my body can handle it. The opinion of every doctor and anesthesiologist consulted is that even a basic surgery to insert a PiCC would require too much of me. So we're going to go back to the IM Synthroid. It's all I have left. I just have to try it in different locations on my body until too much scar tissue builds up there. By the time I build up that scar tissue, I probably won't need injections any longer, if you know what I mean.

-My discharge from the hospital says "invasive and inoperable thyroid cancer with severe, recurrent hypothyroidism and myxedema coma." And that sums up my health situation. We don't know if I have a month or a year or five years. We just know that wills have been made, letters have been written, journals are being kept, and I'm spending as much time as I can with people I love. But James - my baby James. He's in school four days a week, and I miss him. His wonderful school, where he is flourishing, is 45 minutes from here. Nothing around here is like it unless we find a way to come up with private school tuition. Therefore - and this is my big reveal, so please, if you don't like it, I'd rather not hear it, because I know the gravity of my situation in all regards...

-Toby and I are going to have to sell the house we just bought here in Reisterstown this past March and buy a home back in Westminster. James will have a better education there, my endocrinologist is there, we have family and friends nearby to help - a large network of people who want to be there for not only myself, of course, but for Toby and James, and though I hate to leave this house that has felt like home, our realtor knows we have no other options. Come spring 2015, we'll start looking again, and keep our fingers crossed that we'll be able to make a lateral move with little stress involved. Right now, even minimal stress can cause my heart to go. I'm not happy about this, but for me to feel comfortable with - well, the inevitability of my situation - I need to know James is in a place where he is safe, cared for, well-educated in school, and has emotional stability. I need to know Toby will have help if need be. Then, I can rest without worry about transportation issues, weather, huge monetary concerns, timing mishaps, and so forth.

-I think those are all of the updates regarding my life. So now, onto the gratitude. The things for which I give thanks (and I hope that I don't forget anything or anyone). Tis the season, after all!

I am thankful...:
-That, even though I will not win NaNo this year (I've been too fatigued), I still have 18,000 words of a great new story that inspires me and is pushing my boundaries creatively.
-For the trips - alone or with friends and family - to Barnes & Noble (our Baltimore home away from home!) for books, coffee, writing, reading, conversation, play groups, friends for James, and time to stop and smell how wonderful freshly-brewed coffee and newly-printed pages are in this world.
-For the doctors and nurses who have held my hand, who have cried with me, who have told me to fight, who have pushed me beyond my limits, and who have encouraged me to fight until my last breath comes.
-For modern medicine. I wouldn't be writing this post without it.
-That I will be spending this Thanksgiving with my in-laws - Mom and Chris - who have been unwavering with their support and love.
-That I turned 33 on the 27th of October, and that 33 doesn't seem that old now. It seems just right.
-For fun things, like dyeing my hair blue, or wearing a cute shirt, just for the hell of it.
-For the kindness of strangers who hold open doors, who look at me and not my walker, who listen when I tell my story, and who want to help/have helped without me asking for it. I have pride, but I appreciate when people can still be kind and hold the door while I'm balancing a walker, a purse, a child, a drink, and myself.
-For the fact that, despite the ups and downs, my parents support me through this fight and love me in a way I've never noticed before. There have been times they didn't like me, but knowing their love is there is something that means the world to me.
-For my wonderful psychologist, who tries to keep me sane when sanity is sometimes hard to maintain.
-That I can still sing. My voice isn't what it was, but I still have it.
-That I will see James celebrate this Christmas. I absolutely know I will.
-For Relay For Life. I am captain of my own team this year, named Chasing Cures, and I AM going to walk in that Relay on May 15th, 2015. Even if I can only walk two laps, I will walk them. Nothing in this world can stop me from participating in this.
-For the air I can breathe during the times I can breathe, the water I drink when I'm able to drink, and the nourishment I receive when I'm able to receive it.
-That I have a wonderful, beautiful roof over my head and, come spring, will embark on a journey to find another wonderful, beautiful new roof - to keep myself and my family warm and safe and HOME.
-That James is excelling in all aspects of his life. His teachers are impressed with his maturity (especially for a three-year-old), his intelligence, his creativity, his social skills, his ability to listen, how much his verbal skills have improved since the April surgery, and most of all, his compassion. I am impressed, too. I've felt so much guilt for the things he's seen, or the things I've missed, but he knows that I love him. And when he says, "Mommy, I love you so much," or I call him my baby love and he says to me, "No, you're MY baby love, Mommy!" - I just think I have the best child on the planet. May he always be so wise, so kind, so talented, and so loving. May he always tell hilarious jokes, 10-minute stories, and ask "why" to this world around him that has so many questions that need answers. And may he, one day, have some of those answers, and share even more of his intuition and wisdom and love.
-For Toby. He has been my rock, and has put on a strong face for me despite the things he's seen. He works 40 hours a week, is earning his Masters degree, cares for James so frequently, and still manages to be here for me. He's slept in uncomfortable hospital chairs, gone grocery shopping late at night, handled my medical crises calmly, brought flowers home for me for no reason, encourages me to join him for a quick Starbucks run when I'm feeling trapped in the house, and so forth. Not everyone gets to experience that unconditional love. But despite some rough times, we've been together for 11 years now. And we will fight together until the end. I love him, to the backend of forever. I couldn't have hoped for a better partner.
-And finally, last but not least, for my friends - my friends and friends who are really my family. We've shared stories and secrets. We've performed together. We've held hands and cried. We've sent emails and jokes. We've seen each other through losses, births, marriages, surgeries, and mental health emergencies. We've lamented about awful past choices and talked about ways to improve the future. We've tried to fight the world. And some days, we've just said, "I love you." That's all that is needed sometimes.

So I end on that note. I love you. I love all of you, in this very moment, in this very space.

Thank you for reading this, for sharing in my despair and in my joy, and for your unwavering support.

I love you.

(Oh, and an edit - how could I have forgotten? This was James on Halloween. He wanted to be Darth Vader, and though he spent a lot of time laughing and enjoying running from house to house to gather candy, he took his role seriously. He is adorable. He is my everything.):
Halloween 17

Hospital stay #11

I knew it was coming.

I've been here for about 25 hours now. My TSH higher than 305, free T4 .07 (so basically, I don't have any), and my heart is working too hard to keep my body going without help. I've severely anemic. Oxygen saturation is puzzling - it drops to a low number but then rebounds, as though saying, "So she stops breathing randomly. Huh. But she is NOT dying like this. Nope. Well, maybe... well, nope, never mind." So it will go from nothing much to 96 (within normal limits) within a minute. No one can explain it. All they know is that I'm fighting. My body is fighting harder than I can comprehend. I'm hooked to every monitor there is, watching the outside world, sleeping randomly and without warning (never well at night, but always throughout the day), and counseling the nurses who are awake with me as they fight through their rough marriages, their exhaustion, their sadness about missing their kids. I'd rather be kind and helpful than isolate in this isolating place. There isn't time to push the world away, not now. And it's not just some full-of-it sense of "you're strong!" or "you're doing the right thing by helping others." It's not like that. It's more that while I'm still here, and when my brain has those waking moments to be kind - it wants to be kind. Why should my death be more important than someone else's suffering? We all suffer. Why not choose to be kind if we still can be?

So I'll be here, smiling with nurses, asking questions to every doctor, trying to breathe and type, and pretending like it's all going to be okay, 1500 mcg of IV Synthroid and a lot of other meds later. It won't be, not ultimately, but if I can tell my brain that it will be, maybe I can buy more time.

An emotional dump of a post. Sorry.

-I don't think there's much of a need to post on LJ any more, unless I'm just trying to remind myself of something, and in which case, I could always post that to my own, private journal. I'm pretty sure most of my friends here are on FB, where they ALSO tend to post, and those who don't do FB have my email. No one reads or comments here, so I don't think I'll be renewing my paid account in March.

-If I'm here in March. I mean, yes, the doctors said 12-24 months. AND I finally got in to see the world-famous Paul Ladenson at Johns Hopkins Hospital, who gave me the awesome title of "The Most Complicated Case." He's going to try to keep me alive, but my TSH came back at 300, and my red blood cells are ruined. My heart can't keep up with my body now. I'm not getting enough oxygen. Thyroid replacement meds just don't stay within me. I'll need more scans and surgeries, along with radiation and gods know what else. I have a nurse who is willing to be here day or night. It's just not good.

-The GoFundMe campaign stalled right when I needed it most, but that's okay. People have been more than generous. I'll update there again, too, because people seem more concerned there than anywhere else on the Internet (which is odd - one or two FB posts aside, of course), but I know people do care. And money won't solve LIFE. It just solves transportation, parking, time off, costs for treatment, and time with my son.

-Speaking of, James is with my parents, and has been since yesterday. He's in school Tuesday and Wednesday, and then, will go to the beach with my parents Wednesday afternoon through Sunday night. Toby and I were supposed to go to the beach, too - it was a family trip - but I'm not supposed to travel right now. Considering I pass out after 30 minutes in the car, a seven-hour ride won't do, anyhow. But seven days without my son, who will be three on October 17th, is breaking my heart. A day without him makes me sad. How many days are there? How many do any of us have? I need to be with my child. But instead, I've been on the couch since Friday. I know he'll have a great time and be happy, which is what matters the most, and I'm bitching for no reason. It just hurts. It's just been a very rough year.

-I was very severely cyber-stalked and manipulated on FB about three weeks ago. It's hard for me to trust new people right now. I cannot believe I fell for what happened. And now, I have to watch my back. When does the sexual harassment, abuse, manipulation, and memories all of that provokes stop? I wish I knew. :/

-I briefly considered participating in the very last chance to jump back into therealljidol, but when I asked if anyone remembered who I was or if it would be worth it? No replies? And writing for Idol is, honestly, writing for an audience. So I don't think I'll do it. I need to save my energy for my final Vivisection edits and get that to the agent, and then, finish gearing up for NaNo 2014. I'm just saddened that five years ago, I had so many friends - who were writers, to boot - here, and now? It's a wasteland. But again, I'm just whining.

-Maybe this is all just emotional because I know I'm going to be back in the hospital soon. I can feel it within my bones. These odd thyroid changes and issues with my organs failing and lack of oxygen all cause me to feel over-emotional, and I'm sorry that's spilling over into this one post. I'm sorry, I'm sorry, I'm sorry. I just know that I can't keep walking around if my TSH is above 300 right now. It's so hard to stay awake, and I tend to sleep 15-18 hours a day now - often more. I feel like an awful wife and the worst mother alive. And honestly, I haven't even explained the bulk of the medical issues. I don't have the energy or time to post 15 times a day. I can't keep record of anything. I'm too fatigued. I wish I could explain this type of fatigue. I SWORE I wouldn't let this medical shit become my life, and look - it has. I'm letting symptoms and blood tests and appointments define me. I HATE THAT. I am not a goddamned illness, even one that's determined to take me out well before I'm ready for it to do so.

-At least James is happy, healthy, and smart (he's participating in activities for five and six-year-olds in his three-year-old class). Toby is flourishing at work and is about to go back to school for his Masters. Halloween is coming, and James has a great costume idea (and mine should work out, too - I refuse to miss his birthday, which is the 17th, or Halloween, the 31st, because of all this). The house is doing well and we love it here. We saw Toby's mom at the end of August, when I was supposed to have my hysterectomy (but couldn't due to the high-risk anesthesia issue) - she still came to visit. We have basic plans for things to do this fall and winter, as long as I can do them within 30 minutes to an hour of the hospital (Johns Hopkins, that is) - orchards for apple and pumpkin picking, a family photo, James' birthday, my 15-year high school reunion, my birthday, Halloween with awesome costumes, Thanksgiving with Toby's parents, and Christmas. I already have some birthday and Christmas gifts. We are spending time with the people we love the most - great friends and family members. I've formed my own Relay For Life team (RFL is on May 15th, 2015 in Westminster, MD this time, and I wanted to form a team with loved ones. That gives me a reason to try to keep holding on besides the obvious reasons). There are good things. I'm trying to focus on good things.

I'm just so sad. I feel so alone. I feel as though I've been forgotten when I really want people to care, but don't want to sound needy and say, "CARE ABOUT ME." It's easier to hide that feeling. But it's obviously easy to spew my "blah blah I'm needy listen to me whine on LJ" crap here. I need to stop.

So I'm stopping - with this rant and probably with LJ. I hope everyone is well. Be healthy. I love you.
I am really, really tired today after three visits to three different doctors, four phone calls back and forth to Johns Hopkins Hospital, and some blood work (as well as having to deal with the term "metastasized neoplasm" in direct relation to my situation), so - just, if you can, please go here to read the full update, which is update #16. I'm not even asking for donations. If you CAN help or want to help, that is awesome, but I just wanted to let everyone know what's happening.

On top of that, my grandmother is in Shock Trauma because she has severe pneumonia and broke part of her spine - and regarding the latter issue, no one at her assisted living facility noticed it for an entire day. I don't know how critical the situation is at this moment, and I can't go visit her because I'm just now getting over a case of bronchitis (that thankfully did NOT turn into pneumonia...), but if you have any additional spare thoughts or prayers, please send them her way. She's 94, and up until age 89, lived a very healthy, independent life, but I still hate to think that she is suffering and doesn't know what's happening to her (as her dementia has worsened recently).

Thanks. Love you guys.

Cancer-versary

On August 28th, 2013, I received That Call.

But it was supposed to be okay...Collapse )
For those who aren't on FB, or haven't seen the news there:

As of today - June 2nd, 2014 - MY CANCER IS IN REMISSION!

My TSH (thyroid stimulating hormone) is still high, and unfortunately, since the cancer did spread, we can never say I am cancer-free. BUT, as of today, I am not showing immediate signs of cancer remaining in the body. My blood work is significantly better, and leading a different and healthier lifestyle is helping my body as well. I still have to have blood work every two weeks, and I'll have an ultrasound this fall (just about one year after my cancer diagnosis) to make sure nothing is spreading, but due to the meds, treatments in the hospital (surgery, RAI, radiation), and a change in lifestyle - I'm in remission. Remission! I am crying so hard right now that I can barely see what I'm typing. But everyone - REMISSION. I finally feel as though I can say, "I don't have cancer." I can say, "I fought cancer and I WON."

Holy crap. I just - this is the best news I've ever received from a doctor. I need to be cautious, I know, but today, I am celebrating!

(I was diagnosed on August 28th, 2013, even though my docs thought I'd probably had it for about a year longer than that. Surgery was November 4th, 2013, and since then, I have been in the hospital six times due to comas, necessary treatments like RAI and radiation, and so forth. But today may be a new beginning. I know there is no "cure," but in the world of cancer, I just can't explain how awesome this is. I don't feel wonderful physically, but I feel good. I feel stronger. I feel as though I'm a survivor now.)

Absenteeism

I haven't been very active online recently, and to the people who have messaged me out of concern - thank you for caring so much. Usually, a week away from Facebook and a few weeks away from LJ means a hospital visit. But I'm happy to report that hasn't been the case. While I'm far from well, I haven't been in the hospital since mid-April, which is a streak I'd like to keep going.

What is going on? A wide mixture of good and bad. Since my brain is constantly overloaded right now, I'm going to list a few things to give everyone an idea of why FB/LJ haven't been a main focus (I do try to pop in here and there, and I apologize for missing out on what my friends are doing. Mea culpa).

So let's do this (oh, and this is an unlocked, public post, so if anyone wants info on anything extremely personal, please message me. Otherwise, comment away!):
Life and things that closely resemble life.Collapse )

Now, because a lot of people find these fun and then tend to fill them out (which I think is awesome - I like old-school LJ, circa 2005. Those were the days) - a survey.
These 20 questions are silly but interesting, except for the insulting ones...Collapse )

And finally, a cute picture of James riding his bike. He loves being outside. I can't blame him. As long as I stay out of the sun, I could live outside in the 70-80 degree temps we've been having!
 photo James2yearsMay26ridingbike3_zps0ee915ac.jpg

Please let me know how you all are doing and if I've missed anything. I hope everyone is well. All my love.

My son can now hear!

For those who are not on FB, here's an update regarding James. I'm copying and pasting directly, because I'm exhausted - I don't think I slept for more than 90 minutes last night. But...

We are already back home, and our little patient was a surgical champ. He was very attentive during the pre-op check-up (and extremely cute in his gown), and only got upset when he was taken back to the OR. We were allowed back with him until he fell asleep, and it was hard to watch him cry while the nurses put him on the table and put the mask on his face, but we kissed him and told him we loved him, and then, he was asleep for surgery. And within an hour, the surgeon told us that both procedures went well, and that James was in recovery. His ears were so full of fluid that it was a miracle he could hear at ALL. But the tubes will help him tremendously. He had some difficulty right after the anesthesia - night terror-like reactions, rapid heartbeat, and nausea - but after some cuddles and getting back into his own clothing, he asked to go home. Since we've been home, he's been speaking more clearly already, and has read a book and played with his cars. It's hard to believe that three hours ago, he was on a table in the OR, and now, he's walking around, talking, and playing. He's still sleepy, but he is so much better. Toby and I will be keeping a close eye on him today for infections and fevers, but so far, James is truly doing well. He is beyond amazing and isn't complaining one bit about any pain.

Thanks to everyone for the love and good thoughts for today. All of the fundraiser donations helped us to pay for some of the costs today as well, and while I'm not posting the link here today, the fundraiser is definitely still going as we continue this journey to help James hear, recover properly, and start speaking clearly. James has to be on a very expensive medication for his ears this week, which we'll be picking up from the pharmacy this afternoon, but that will ensure that he doesn't get any post-surgical infections in his ears. We also have a follow-up appointment very soon.

But what truly matters is that my baby is safe, not in a lot of pain, drinking, cuddling with us - and hearing. His speech, while still a bit muffled and slurred (and after anesthesia, it would be, anyway!), is actually clearer - he's trying harder to pronounce words he's never been able to articulate before. I am amazed. This kid is truly a champ.

Plus, only three hours post-surgery, what two-year-old would look at you and ask to go get "Starbucks coffee?" Talk about memorable. I love my son so very much. I am so glad that he is home and doing well.

James 2 years April 8 before surgery 1
This has been a rough weekend for myriad reasons, and in fact, if we could go back in time and just erase it, I'd be happy with that.

I'm too tired/emotional for a proper post, so here's what has happened, or what is happening:

-James is having surgery in just about 28 hours from now. The reality that my child will be under anesthesia, on an operating room table, is really bothering me. Yes, I know - tubes in a child's ears and an adenoidectomy are not uncommon procedures. But this is my child. The words "uncommon" and "easy" don't cross your mind when you're thinking about your child. You only think, "Will he be okay? This is the best thing for him, right?" It must be the best thing for him - his surgeon and pediatrician think so, given that he has severe issues with his ears, including his ability to hear. I believe it has to be. But it's scary. I don't want to think about the fact James might be scared or in pain at any point. He's just a little boy.

-The fundraising campaign stalled quite a bit, and even though I lowered the goal to only cover the costs of what James will need (I mentioned this in my previous post on the 2nd, but the original goal was $4000 so I could receive some necessary treatments, but I lowered it to $2500 because it's more important for James to receive the help - what I need will have to wait), we're not even at the 50% mark. I am so, so deeply grateful to everyone who has donated or shared the link, so please don't think I'm being a jerk. I don't mean for that at all. We're $145 from the halfway point, though, with 28 hours until surgery, so I'd love to hit that goal. If anyone is willing, would you share either this journal entry or the link to the campaign? The link to the GoFundMe campaign is right here. For those who have asked about PayPal, my email address is mandi@theredgreenillusion.com. Any and all help is greatly appreciated. I don't want anything to stand in the way of James receiving the surgery and follow-up care that he needs, and I especially don't want money (or lack thereof) to be the thing that stands in the way. Thanks again to anyone who has helped or can help, especially at a time where I feel utterly helpless.

-I found out yesterday that, within a span of five days, two members of my cancer support group died. One, Tony, was 53, and the other, Dave, was 61. Both were doing moderately well, and died moderately suddenly. I am devastated - these were two lovely, fun, kind men who shared their stories and opened their hearts to our small group of 12-15 people. Their spouses, who often accompanied them to meetings - well, I can't imagine what they are feeling. I am so devastated that words fail me. I only knew Tony and Dave since January, but we bonded over so many things, and I am 1)so sad for their families, and 2)selfishly freaking out. If these two men, who had battled the HELL out of cancer and were doing so much better, died suddenly - could that be another friend of mine from our group? Could it be me? I've been in and out of hospitals, barely woken up from comas, and am still in a state where nothing, treatment-wise, is helping me. I am scared. I'm scared for my friends in cancer support, and I'm scared for their families, and I'm scared for myself. Grief is a selfish thing, I suppose, and at cancer support Monday night (tonight), it's going to be rough. I'm not going to know what to say. I just know that these two men were my brothers in spirit, we fought together, and I hope they are at peace.

-Flashbacks are at an all-time high. According to Toby, I woke up several times last night screaming, when I was able to drift off to sleep. In reality, I didn't sleep much at all. I'm having a really rough time right now with odd memories that are coming out of seemingly nowhere. Add that to some physical health issues that are mounting and are out of control, and I feel extremely depressed. I'm trying to push that aside, but it's hard to feel happiness. And that makes me feel guilt. I have this lovely new home, a wonderful husband and amazing son, friends who stand by me - but I also feel isolated, hideous, untalented, ill, and useless. I can't shake the feeling that something bad is around the bend. I'll never stop fighting, and I'm not posting this to whine or say "I give up" - I can't do that, and I think I've honestly changed since my whiny "but pay attention to me!" days - but I just needed to share how I feel.

-I miss performing, teaching, publishing, not getting sick every day, and feeling like I can wake up. I'm in a perpetual nightmare with smalls moments of good dreams in between the pressure-laden crevices. I want to help James hear better. I want to celebrate Toby's birthday next month. I want to know who I am.

And I want everyone to know that I love them. I do. I love you all in one way or another - for being supportive, for encouraging me, for your witty posts, for sharing information, for simply existing. This is why, despite the decline of LJ, I always return. Even if only one or two people read, I know that one or two people are here. They care and write and pay attention. I need to reciprocate that better, too, but still - it's nice to have this space.

I'm so tired, but I can't sleep. I'll be around. Thanks again to anyone who read, and who can share the link/info I posted. I know how lucky I am. Deep down, I really, honestly do.

There's not much to say...

...so I'll let this link do the talking for me.

Basically, things are pretty bad. James - a normally healthy kid - needs tubes in his ears or he will lose his hearing. He has lost 40% of his hearing in his left ear, and 75% of his hearing in his right ear. This can be reversed (we hope) by tubes in his ears, but due to a horrendous insurance deductible, we can't afford it. Surgery date? Eight days from now. And I will do anything, including selling every possession I own, to make sure he has surgery so he doesn't lose his hearing and can stop feeling the unrelenting pain of six ear infections in only four months.

I also received word that my thyroid cancer is worse and treatments aren't working. My endocrinologist spoke to a world-renowned thyroid cancer specialist, who said my case was extremely rare. Being "one in a million" - my endo's words - isn't good in this situation. We're running out of options, and I can't afford to spend weeks in a hospital - or, even worse, weeks in a coma, which is a legitimate possibility at this point.

Add to that the fact that something else is happening, which is this: (AND READ AT YOUR OWN RISK, LJ CUTS ARE NOT WORKING FOR ME RIGHT NOW...)
I cannot stop vomiting, my hair is slowly falling out again (just as I had enough to have it styled), and after 27 days, my period decided to randomly show up (I run on a 32-40 day cycle) and I spent the weekend flat on my back on the couch, trying not to pass the 10+ tennis ball-sized clots from my body (hello, anemia, and it's only getting worse) that I had to physically pull out of me and go through 40+ pads, so I'll be seeing my GYN Wednesday for what will most likely be a hysterectomy within the next few weeks...

(OKAY, YOU'RE SAFE NOW, KEEP READING.)
...and I'm clearly in a bad place. James, despite his own pain, gave me a gift he received at school for doing such a great job during his first week in hopes it would make me feel better. There is nothing worse than knowing your two-year-old senses your pain, cries for you, and tries to give you toys and stickers to make you feel better - and he knows it's not working. My heart is broken.

We'll not mention the DID, but yeah, that's not going very well, either. No time for therapy right now.

Anyhow, I know everyone is busy with LJ Idol, or real life, or whatever, and I know everyone is cash-strapped right now (and I feel awful that I'm doing this - I don't like asking for help like this at all, but I don't know what else to do at the moment, with only eight days to go). I know that I'm not everyone's best friend and am not super-popular on the Internet these days, but if you could at least share the link or this post or something, I would appreciate it so very much. Just as something wonderful happened - buying our new home - we run into this. It's been a very rough year for my family, so please, just read the link I've attached if you can, share it if you want to (because that does make a difference), and help me to help my son keep his hearing. Thank you all. Lots of love and good thoughts to everyone.

And they said, "It's just your thyroid..."

"It's just."

Or, "Thyroid cancer is the easiest to treat! This is simple! You'll be just fine, so don't worry."

Those statements were said to make me feel better - I'd hope - as opposed to validating someone else's disease or illness to be greater than what I have. I hate pain-bragging, and I abhor when people tell me "abc is worse than xyz." No, abc isn't worse. It's different. And xyz can turn into something you don't expect. So I choose to believe that when people said those things, they were trying to be kind, and hope for the best when it came to my specific situation with the known details at the time.

Sadly, xyz - in this case, my thyroid cancer - isn't getting better. Typing hurts, so here's the FB update, for those who don't have FB and don't know what's going on:

"I recently [Tuesday afternoon] woke up at GBMC due to my third myxedema coma in two months. It started very late last night - 1 am or so - and despite Toby's efforts, I wouldn't wake up this morning at all (he shook me, yelled, everything - I only hope James has no clue what's happening to me, though apparently, at one point, he hopped into bed and curled up with me while Toby called for help). I've been alert since a massive hit of Synthroid (around 3 pm?), but am still in critical condition. It's weird to type that - to still be at risk for death but also able to type a sentence.

Cancerous tissue was also found where my thyroid used to be, and I'm hooked to about six different machines right now. If anyone has any good thoughts or love to spare, I'd appreciate it. Five times in the hospital in 11 weeks isn't a record I ever wanted to set. I miss James and wish Toby could still be here, and I'm terrified. This cancer and the high TSH (it was 150 the other day, and today, it's back up to 230, so I'm in the extremely high-risk zone) won't go away no matter what we do."

That's where I am right now. Away from my child, who watched me as I fell into another coma, and watched his father desperately try to wake me up. Away from my obligations at home, to myself and to others.

Away from health and a good explanation as to why, at 32, this "easy" cancer turned into something that isn't reacting to treatment.

And I wish it would. I wish this could be an easy thing. But instead - I'll be in the hospital, fighting, and hoping for the best results possible. I will NOT lose this battle. But I would like to know if the end is in sight, somewhere down the line.

In other news, 32 days until potentially awesome stuff that I can finally share with the world at large. I WILL be around for that. I want to share something good and happy with you all. ♥.

Love and good health to everyone.

Goals, not resolutions

For the longest time, until about 2011, I made a point out of creating 12 resolutions - one per month of the year - to try to achieve between January 1st and December 31st. Ultimately, however, I never achieved my 12 resolutions. They were silly things, and serious things, and things that were far too standard. I don't believe that, for myself, resolutions for a new year work. But goals - things for me to seriously strive to achieve - DO work. So below are some things that I would like to try to achieve by the end of 2014. I will try not to berate myself if I don't meet my goals, but I think that these are reasonable, given my circumstances:

1)To do what I need to do to send my thyroid cancer into partial or full remission. A lot of that isn't up to me, but if I keep up with meds, treatment, scans, blood work, and follow-up appointments with my doctors, I have a great shot at either partial remission or full remission.

2)To do what is necessary to benefit my health. Sometimes, in the past, I have said, "Lose 40 pounds!" Well, that's all well and good, and I need to lose about 40 pounds to be at my healthy weight, but with no thyroid and severe GI issues, that cannot happen today. But that doesn't mean it WON'T happen throughout the year. Once I get the GI and thyroid issues a bit more under control (the Synthroid really needs to absorb before this can occur), I can work on losing some weight in a slow, steady manner. This should help SOME of my health issues. I won't pretend that weight loss will "cure" me, but I think it will be beneficial to my mental and physical health. Some other things I need to do to benefit my health would be to continue working with home health care services, rest when I am tired, know my limit and stop activity when I reach that limit, talk to my doctors about the most effective medications I can take, and continue to see my therapist. I think that if I do those things, I will feel a bit more human - and perhaps lose that weight I'd like to lose - by the end of this year.

3)Buy a home with Toby. That sounds like a tall order, perhaps, but it's not going too badly so far. We have until the end of May to find what we like, pay the down payment, sign the necessary contracts, and move our belongings. Some people aren't supportive of this goal - they want me to stay in Westminster, or not move while my health is rocky - but I need to ignore people who don't think that buying a home for my family is wise. It is an important investment, Toby and I have found a nice area in a different county that benefits all of our family (closer to work for him, closer to health care for me, more options for schooling and activities for James), and knowing that we are in our OWN place will help me mentally relax. I'm aware that a new roof may set us back financially. I'm aware that if the AC dies, we pay to replace it. This is why, right now, we are getting everything in order so that, come March or April, we should hopefully be signing a contract.

4)Start shutting out/eliminating the naysayers or whiners from my life. There are a lot of people - well, okay, to be fair, about 5 or 6 people - who are very interested in the best way to run my life. They may be doing this in a passive-aggressive manner, but I don't appreciate it. Concern is one thing, but telling me HOW to live my life is another. Whining about how god-awful every facet of life is also is an issue. Please don't do that to me - get out your feelings, by all means, but recognize that if you're still breathing, you have it made. Things can always be worse. So I need to shut out people who try to tell me the "best way" to live, as well as those whose whining makes my life more negative. I SAY I will do these things, but this year, I need to follow through. As a 32-year-old wife and mother who is financially secure (no one pays any of my bills but myself or Toby), happy, raising a healthy and loving child, and doing her very best to maintain a home, her health, and her own activities, I do not need naysayers or whiners. Constructive criticism is fine. Being mean or telling me what I shouldn't do is another thing.

5)Start saving for the future. Yes, we have money set aside for a house, and we're doing a really great job of paying down debts. But once we move, and settle in, and see what kinds of remodeling we'd like to do to our own home, I'd like to start saving more money. At this point, that money should be for four things: One, retirement; two, a college/future fund for James; three, an emergency fund in case the car needs work or we need to pay a large hospital bill; and four, an account for home improvements. This is possible, but it will take some serious work and dedication once summer/fall arrives.

6)Continue to work on my creative pursuits - and that includes shutting down the doubt that is in my head about those pursuits. I have had many opportunities to publish by now, and have shied away. I should have sent one of my novels to an interested agent by now, but backed down. This year, I refuse to do that. I need to finish my novel edits and follow through. I need to compile the rest of my short works and follow through. I need to stop saying, "This isn't good enough" and TRY HARDER. My works won't publish themselves, and since I'm not interested in self-publication, I need to put effort into working with agents, editors, and publishers who have shown/may show interest in what I have. I won't get anywhere by sitting on my ass. This goal also includes musical pursuits. I keep saying that I will record some music, even if it's just for myself. Well, now, I have no excuse not to, once my voice fully returns (and once it does, I'll enter back into training for a short period to make sure I'm not straining/harming my healing vocal cords). I have equipment for a moderately professional set-up at home, so once I recover, I need to work on writing music, learning the mandolin more proficiently, playing the piano as much as my fingers will allow, and singing cover songs/my own music/whatever makes me happy. I may not ever be well enough to be on stage again, but there's still a lot I can do from home which can help me perform at even some local gigs.

7)Continue to make sure that James is receiving the best care possible in an emotional, educational, physical, etc. manner. I won the kid lotto, and every single day, I cannot believe that I have this miracle child in my life. But I want to make sure that he stays physically and mentally well, which means regular check-ups with the doctor (not a problem), good behavior at home (again, not a problem), open discussions and dialogues (more than happy to do that), frequent play so that he doesn't think life is all about the things we learn in school (easy enough), classroom interaction for socialization and education (again, something already happening - it just needs to continue to happen), and lots of reading/cuddling/seeing friends/independent play time. I'm not a hovering parent - and James is a moderately independent child - so I'd like to keep encouraging that. But he knows he can come to me whenever he needs to, and I want to encourage that as well. I'm his mom, not his buddy, and at two, that's absolutely the way it should be - so I'm happy that he's willing to do things on his own but still come to me if he needs help or has questions. I want to keep fostering that loving, educational, happy, healthy environment.

8)Further my own social engagements. I am VERY lucky to have several wonderful friends whom I see or chat with regularly. I want to make sure not to take them for granted, and continue to see and talk to those people. Expanding my social circle is fine, but the Starbucks trips aren't just for the coffee, and Thanksgiving isn't just for the food - those are times to celebrate life with those I love. And if I'm feeling socially anxious, I need to ask myself why. Is that something I can work through to see a friend? If not, why not? Am I more concerned about my health than anything else? If so, so many solutions can be reached. I just want those I love to know I love them, and I want to spend as much time with those people.

9)Spend more quality time with Toby. It's really easy - especially while ill or while dealing with insomnia - to just crash at night after James goes to bed. It's easy to spend the weekends curled up watching TV. But I think that, to keep our relationship healthy, Toby and I should spend more time together. If that means we hire a sitter once or twice a month so we have a few hours to go shopping or house-hunting or sit at Starbucks to talk, we should do that. And talk shouldn't JUST be about bills or shopping lists for the grocery store. We need to talk more about the silly things, the things we love, the things that make us who we are. After 10 years, relationships can go stale so easily. And I'm not willing to let that happen. I'm willing to turn off the TV and look at Toby and challenge him to a game of cards or a good discussion.

10)Organize my life. That seems like a silly goal for someone with my form of OCD to make. But when I think about it, this is a very big goal, especially since we WILL be moving. I need to keep bills in their proper spots. Same goes for all receipts. Old coupons should be thrown out. Furniture we don't use should be donated or taken to the dump. Objects we don't use should be sold or donated. Books should go on shelves, not huge piles on the piano or the floor. A shared calendar should be kept so I know if Toby has a work meeting, James has school, or I have an appointment with a doctor. Any time a debt is paid down or off, a clear record should be kept (which I mostly do, but I need to reinforce this for myself). My website for writing needs to be updated so that I can look more professional in my field. Basically, the idea is less clutter, more sense. This will take time, and is still a bit vague, but making sure things are in their proper places (including bills, money, and even toys that James has) will make life less stressful.

I think those goals are good ones. They are things I can achieve. I'm not saying everything will work out according to the plan in my head, but I WILL be working toward success. I won't stand in my own way.

What say you, my friends? Do you agree? Do you have your own goals - perhaps one, perhaps 10, perhaps 20 - for 2014? I'd love to hear what you think and what you have in store for yourselves.

Hospital stay, take four (in seven weeks)

I'll keep this mostly brief because all of my meds are kicking in, and I have issues with staying awake and conscious, anyhow:

On Thursday night (the 26th?), after a fun day with Toby while James was in school, I felt unwell at about 7 pm. I went to lie down, and then, all was darkness until I woke up back at GBMC hospital. My blood count was very low, my TSH was very high, my direct T-4 was almost non-existent, and Toby was told I had entered back into a medical coma. Nothing really registers with me until Friday, to be honest - I lost about 11 hours of time to unconsciousness. I landed in the ICU again, of course, with the same nurse as last time (Jen, whom I adore), but this time, I couldn't stop getting sick. Toby stayed by my side as long as he could, and when he had to leave, Jen stayed with me, and then my friend Lee came to stay with me. IV Synthroid was started, I was hooked to almost every machine possible, and was told that I wasn't absorbing my medication via pill form - and therefore, wasn't going to be leaving the hospital until the best plan was figured out.

Today, the 28th, I left the ICU and moved to the oncology floor. I spoke to a GI who said I may have very severe Crohn's, which is causing constant illness and lack of absorption, or - more frightening - a form of gastroparesis. Tests will be run Monday to see what's happening, and I'll go under anesthesia for them. The likelihood I'll leave here for the new year is about 0%. The hopeful discharge date is Thursday the 2nd of January. Being away from James like this, and being in this condition where I can barely function (I'm typing, but I'm not very functional) breaks my heart. I believe I'll get better, but this has been a long road and a very, very slow process.

I don't believe I am going to die. I still have a 60% survival rate and a great chance to recover in time. But it's not going to be easy. A lot of things are going to have to change.

What I want for my life is simple: I want to be with my husband and my son. I want us to find our house - the right house for our family - by March or April. I'd love to have or adopt another child (I am selfish and envy how many people are pregnant right now), but the former won't occur naturally and the latter is most likely too costly. If only love mattered and not money when it came to adoption. :/ I want to see my friends and loved ones more, and if nothing else, at least make sure they all know they are loved. I want to sing again, to write words that make sense, to lead the academic life I used to lead. And beyond all that, selfishly, I want to have one day in which I feel well so that I can take care of everyone again. I want to stop these hospital visits, eradicate the cancer, and figure out why nothing seems to help. The life I dream of may be possible - it really can be - but I have to win this battle first.

Toby will be out house-hunting tomorrow. Despite the lack of support we have from some people regarding that, please cross your fingers. We need to be in a home closer to the hospital and to Toby's work so that we're not driving 45 minutes, one way, for me to receive hospital care and follow-up care. And he needs to be closer to work because even though 30 minutes is a respectable drive, all of our lives will be easier if he can be there, and then back to us, in 10 minutes.

I haven't really read any LJ entries since about 12/25, so if anything major is happening to anyone, please let me know. I'll be here for you, however you need me.

I'll update when I can and if I can (Toby brought me my computer since I'll be here for a long time), but for now, I need to crash. All of the meds are hitting me hard, and I've been told to sleep and rest as much as I can for my own well-being. I truly hope all of you are well, and if anything major occurs, I'll post about it. If only the cancer would not spread, if my body would digest food and absorb medication, and my T-4 and TSH would level out - then I'd be okay. I can fight through the other illnesses, I promise you. But I'm so tired right now, and fighting is hard. But trust me, I'll still be here. No matter what happens, no matter how many comas and tests and machines there are, I'm still here.
Hello, LJ. I see you dying a slow death, but I'll be here until I'm dead as well.

Cheerful first few lines right before the holidays, right?

Anyhow, it's been some time, so I figured it was time for a brief update. And brief is the word here - I have a hard time staying awake these days, and when I am awake, I am usually lying down. So for me, this is brief:

-It's going to be great celebrating Christmas with a two-year-old who pretty much gets the concept. This is when the holidays become fun, at least to me. I don't particularly care about Christmas - in fact, I usually loathe it due to some family members and past experiences - but knowing James cares makes it awesome. Today, he came home from school wearing reindeer antlers and holding a candy cane painting. I can't wait until he sees half-eaten cookies and Santa gifts in about 30 hours from now.

-I really haven't seen many people recently, as my ability to get out and about is quite limited, but I AM glad that I've been able to run a few errands, and I am seeing four different friends in the next nine days. Being radioactive was isolating, obviously, and now, despite how tired I am, I'm trying to make up for it. Toby, James, and I have also made several trips to our Starbucks family down the road, which always makes up for any time I've lost or pain I've felt/been feeling.

-This will be the pain/things are not so good part. I saw my endocrinologist and oncologist last week, and the endo said that he's continuously shocked that I am not in a medical coma (again). Home health care is helping, but not enough. If I'm not sleeping, I'm in a state that's close to shock, which makes functioning difficult. And sadly, my blood work and newest scans have revealed that the radioactive treatment didn't work. My TSH, despite IV Synthroid, is higher than 300 (which means it's about 296-299 counts too high), and the cancer has spread. My survival rate dropped last week from 90% to 60%. Unfortunately, this means a lot of pills, a lot of pain, and a lot of visits to doctors. I try to hide this, and rarely talk about it, but in six weeks, my survival rate has decreased to a number that makes me severely uncomfortable. But I have many pills, nurses who come to my home to care for me, James is in a good school during the day, and I still pull my ass together to make sure that Christmas gifts are wrapped, photo albums are assembled (it's a weird thing I find myself doing before people die. The fact I'm obsessed with it for myself and other close family members is starting to worry me), and I check my BP/pulse/oxygen rate 6-8 times a day. A port will be installed in my body in January so I can receive IV medications (my body doesn't absorb pills well, if at all). We're doing all we can. And I won't complain about it further, because that won't cure my illnesses or make anyone feel better.

-DID stuff has been - stuff. Things have been mostly quiet, for which I'm grateful, but I'm still never alone. This is the first December in a LONG time where I've not felt suicidal, however, which is great.

-My GP's office picks a few families per year and, based on how things have been for them medically (how much they've paid, how severe their conditions have become, etc), pays for an entire holiday meal for them. I was one of the people chosen, so now, we have a 13-pound turkey, stuffing, mashed potatoes, gravy, cranberry relish, rolls, and a pumpkin pie for 6-8 people. I really wish I could eat the food, but with my gluten allergy, I can't - but it can feed my family and extended family for a while. I am so grateful to my GP's office for this amazing, thoughtful gift.

-I sprung for a new tattoo the other day to document my health journey. The butterfly, in thyroid cancer colors, dances on my back between the words "fight" and "win." Maybe this is cliche to most people, but I'm glad to have this art on my body. The artist was incredibly gentle and kind, and I will absolutely return to her again for my next tattoo. I'll post a pic from the day I had it done under a cut.

-I guess I can share some final news now, since it's going to be happening in the next three to six months: we're moving. I haven't told everyone - or really, most people - yet, but Toby and I sat down after I discussed my health and talked to several of my doctors, and we decided that we need to be a bit closer to the only doctors and hospitals that treat me well and consistently. So we're currently in the process of looking to buy a home in the Reisterstown/Owings Mills area of Maryland. It will be a bit more urban, which is fine, Toby will be five or so minutes from work (he doesn't want to leave his job, not when they've been so steady and kind to him and our family), and we're looking into nice properties with good school systems and VERY close-by health care. I'm eager to leave Westminster (and their awful hospital - we had to take James last week when he was running a fever of 104.3, and they did nothing. No fluids, no meds, nothing. We won't return there for any reason whatsoever), though our initial line of thinking was to move out-of-state. I'm still a little sad that we won't be doing so, at least not now, but I physically cannot. My health is declining too rapidly, and I need to choose to be close to my health team in Baltimore. House-hunting is simultaneously fun and heartbreaking (one of the homes we loved just went under contract, and we can't afford the down payment until February, so we're JUST starting the process), but in the end, we'll find the right place and be in OUR home, away from Westminster, and starting a new chapter in our lives.

Here are a few recent pictures, under a cut to save some space. Other than that - I hope everyone has had or will have a good holiday. I'd love to hear from you all, even if it's a brief hello. I'm active on FB, but it just doesn't feel as personal. I miss the sense of community LJ used to provide. Still, whether you post or comment or don't do either, I wish you all well, and hope you are happy and healthy.

A few pictures of my life this month.Collapse )

Home

Hi, everyone. I'm back.

I know LJ isn't a popular site on Friday/the weekend, so I'll keep this moderately short. I'm tired, anyhow, and I just woke up two hours ago!

Last Friday, my endocrinologist wanted me to be admitted to GBMC (hospital - about 40 minutes from my home) for radioactive iodine as a way to kill off the cancer cells my thyroid left behind and that had spread into my lymph nodes. Toby and I returned home after that early morning visit - and I was severely hypothyroid, with a TSH of 223 and a free t-4 of .03 when normal would be a TSH of .4-4 and free t-4 at LEAST at .8, apparently - and I was told that we would hear about returning to GBMC later that day for help. In the meantime, I was to be monitored to make sure I didn't sleep too much and actually lapse into a medical coma.

However, I lapsed into a medical coma. I woke briefly, but overall, was out for about 36 hours.

This meant a stay in the ICU for a bit, and then, I was transferred to critical care. After some monitoring there, I received radioactive iodine treatments very early Tuesday morning (I think it was Tuesday? That may have been Monday. My brain is still foggy and confused), and based upon previous success rates, my endocrinologist said that I should be in what he calls "partial remission." But it will be too soon to tell for several weeks to months.

I was able to come home late Wednesday - after almost a week in the hospital - and was still not well, but the hospital had done all they could. The lingering issues were my inability to absorb meds (most meds I received were via IV), a very low BP (75/45, but when I left, it was 95/65), and some dizziness/exhaustion, but there was no medical need to keep me there. I was also a bit radioactive still, as it takes 48-72 hours before I'm "safe" to be around people (and a slight bit longer to be around children), so when I returned home, I sequestered myself in the bedroom, and Toby slept on the couch that night. Last night was the first night we could share a bed together again, and today will be the first day I can spend long periods of time with James again (yay)! I can't believe how much I've missed him. I honestly haven't seen him in about seven to eight days, minus one or two 10-minute visits, so I can't wait to hug my baby. Luckily, he's been able to attend school four days this past week instead of two, so he's been taken care of and is very happy.

Since I met my deductible with my insurance company (Medicare Part A pays for the hospital stay, though), I am receiving home health care free of charge for at least three weeks. Nurses and occupational therapists come in and monitor my blood pressure, do blood work, help with med management (since I take so many pills at so many odd times throughout the day) and see how I'm feeling/what I'm capable of doing that day. They help me walk (I'm still unsteady) and check my oxygen levels. I'm very grateful for this.

And I'm very grateful for all the messages, FB comments, texts, emails, and so forth I received while away. While in isolation, only specific nurses and docs and nuclear med techs could come in to see me, so I was on my own a lot of the time for 36 hours, so it was very lonely. We also had a semi-bad snowstorm last Sunday, so I was alone that day as well, but being able to read the kind emails and chat with a few people on Facebook really helped. Thank you all for your love, kindness, and support. That did help me survive, as silly as that might sound.

I'm going to wrap this up, but - I'm obviously not in a coma now, I've been treated with RAI for the cancer, I'm being closely monitored regarding my blood pressure and energy levels, I'm dealing with regular blood work, and now, am hoping for remission. I don't feel even close to "well" or "healthy," but I'm alive, and there were a few times when "alive" was something that I may not have been. That sounds a bit over the top, but it isn't. When you can't wake up and end up in the ICU, it's a pretty scary thing. So I'm just grateful to be here to say hello, to explain where I've been, and to say that I've missed you all. I still have a long road ahead of me, and I have myriad other health issues to continue to deal with, but as for thyroid cancer? I hope to be able to say that I'm in remission very soon. I'll continue to deal with elevated TSH levels for a while, and I have permanent hypocalcemia (meaning I'll need high doses of calcium for the rest of my life) - as well as hypokalemia - but I'm here, I'm alive, and tonight, I'll be able to hang out with Toby and James. It's nice to be home, to know I've had wonderful support, and to be able to say that I am doing everything to kick cancer's ass despite some unexpected bumps in the road. :)

Have a good weekend, everyone. Love to you all. Be well.

And it's time for the radioactivity...

Copied from Facebook, because staying awake is almost impossible right now:

Bad news from the endo: my blood work is so atrocious that he wants to admit me for radioactive iodine/IV treatments immediately. Right now, we're in the process of getting me into GBMC, since my pulse is low and he's worried I will actually lapse into a medical coma. Until we get the official word in about three hours, I'm just spending time on the couch, slowly packing, and trying to stay awake. Luckily, I CAN go in for the radioactive iodine, though, because my body hasn't been absorbing the Synthroid I need (usually, a person has to be off Synthroid for a short bit before RAI - in my case, I never absorbed it, so it was never an issue, and since I'm allergic to iodine, I didn't have to lower my intake of that - so receiving the treatment will be fun, since it will require steroids and Benadryl to stop me from going into shock), BUT this means the cancer can be treated rapidly. Though the cancer has spread, it's still not in my lungs or bones, so if we knock it out as best as possible NOW, I have between a 60-90% survival rate, with 90% looking the most likely. So we're just waiting to hear from GBMC as to my admission time. I'll be there 2-3 days, and then, quarantined at home for a day or two since I'll still be radioactive. This isn't what I had in mind, but it's happening. I probably won't have my computer with me in the hospital, since I don't want to deal with it becoming radioactive, but I will have my iPad, so I can try to keep in touch.

My love to everyone. Be well. Be happy.

I'm trying, but it's not getting better

Most of this is just copied from Facebook, because I feel quite unwell:

So, I'm going to go ahead and guess that my blood work is atrocious. Actually, I won't guess, because both my surgeon and endocrinologist confirmed it: My TSH (thyroid hormone level) shot up from 15 to 223 (when normal is .4-4.75), and my free t4 is .03 (when normal is .8-1.77). That doesn't include my calcium levels, which are apparently abysmal as well. I'm on temporary bed rest so that I don't pass out, trip, or have a heart attack, and am seeing my endocrinologist Friday unless I DO pass out (well, more than just once or twice, anyhow). I'm trying to remain positive and trying not to bitch about health issues, but I really need this to stop, because my body is literally trying to kill me (no, that is not hyperbolic. It actually is). Maybe it will stop after the radioactive iodine? I don't know. All I know is that I'm too tired to function (especially after fighting with two insurance companies about who will cover my necessary medical stays - that took an hour of my time, and both companies want the other to pay). And I'd like to be cancer-free. I wish those requests weren't complicated. I would just like this one issue - this thyroid/thyroid cancer issue - to stop. I can deal with the rest as per usual. Please.

I really dislike complaining about health, but I'm giving myself a free pass today. Thyroid issues suck. Thyroid cancer sucks. I am stuck in my house unless I need to go to the hospital again, or until Friday, when I see my endocrinologist and an oncologist. I'm used to dealing with the pain and side effects (not that it's fun, but I'm used to it) from Lupus, RA, Celiac, Crohn's, seizures, and on and on. I was used to the exhaustion of Hashimoto's and an elevated TSH. However, the highest TSH I'd ever had was 80. It's now 223. When your doctor tells you that this could literally cause secondary problems that could kill you, you listen, and freak out, and complain on LJ a bit. So I'm sorry for the complaining part, but I just feel as though there's going to be a lot of storm before the calm. There's been no calm before the storm, that's for sure.

In the end, I'm sure I'll be fine. (Side note: I'm grateful I finished my holiday shopping the other day, but NO, not on Thanksgiving or Black Friday, because I don't support retailers telling employees to work - despite OT pay - on a holiday when they could be with their families. Thursday does not equal Friday, at least not the last time I checked, so people standing in line to buy crap on Thursday evening are part of the problem in this world. Sorry, but that's just how I feel.) Anyhow, even if I AM going to be fine, this is scary. I'm sick. I need help that, so far, I haven't been able to receive in full. I am envious right now of people who can walk, work, go to the gym, drive, not need to sleep 18 hours a day, think coherently, don't pass out frequently, and can enjoy the season (or just the day) with family and friends. I am bitter toward my body. I also experienced a major DID switch last night (both Madeleine and Ruby, who both confirmed the existence of a new alter), and I don't know all the details, but it was apparently pretty intense, so I'd like a break from that as well (perhaps my therapist can help. I do see her Thursday, and despite how I feel, I AM going to that appointment. It's needed).

At least we had a nice Thanksgiving with my mother-in-law, who flew down here to make sure we were all doing okay. That was wonderful, and I am so grateful she came here. I wish we could see her more often.

Sorry. I shouldn't complain. I shouldn't. But I am overwhelmed, I have a lot to do that I can't seem to function well enough to do, and I just want to go back to bed. If I'm acting horrible or strange or whiny, I'm sorry. I'm so, so tired of all of this. I'd like to hear some good news - some actual good news. Something wonderful and uplifting and kind. Something not selfish and painful and awful. I don't even know.

I did it


51194 / 50000 words. 102% done!

NaNoWriMo isn't a big deal to most people - and may not be in the grand scheme of living one's life. But this November, I wasn't sure I'd make it at all, and therefore, succeeding became a big deal. I knew I'd be losing two weeks to surgery, so I had to write 50,000 words in order to complete the challenge in only 14 days - if that.

I just hit 51,194 words this afternoon - I wrote more than 10,000 words between 12:30 am this morning and 20 minutes ago - and I won this year. I just did it.

No excuses. I am sick. I still have cancer. My Lupus and RA are flaring. I have to raise a child full-time. I have a house to keep up with. I deal with medical and personal demons, doctor and psychologist visits, and the day-to-day stuff everyone deals with. And yet, I still did this. In 11 days. True, I wrote 50,000 words in five days back in 2009, but I hadn't had surgery, I didn't have a kid, and all I had to do was sit on the couch and write. This was a bigger challenge. But I still did it. And I like my story. The competition may be over, but the novel isn't. I just finished the second of three individual parts. This novel will be 80,000 words for certain, and that's okay. I will write it, and try to keep progressing, even though I've reached the word count I needed for the month.

I guess what has me so thrilled is that a lot of people said to me, "Take it easy, maybe you'll hit 20,000." And I agreed. And yet, despite having to spend extra days in the hospital, despite last week's "you still have cancer, the surgery didn't eradicate that" news, despite all the hell that has happened this month, I produced something beautiful. I defied my own odds and expectations. And there's no greater satisfaction than that.

Thank you to everyone who believed in me - and who still believes in me. Soon, I'll have four finished novels under my belt. And soon, I shall do something with those novels. The time to sit around and wait is over. It's time to be proactive. Time is fleeting; we don't know how much of it we have, no matter who we are and what we face. I know this, and respect this, now.

It's dark outside already, and that normally depresses me. It's only 5 pm, after all. But today seems a little brighter. I feel a little better. Accomplishment is a wonderful thing.
It's no surprise to anyone that I've had a lot on my mind recently. Some of what's been lingering - the newest cancer diagnosis, issues with other aspects of my health, worries about money - has been lingering for quite some time. Other concerns - trying to write 50,000 words in 30 days, who gets what for Christmas, making sure the house is clean for Thanksgiving even though I can't turn my head very well - are far more trivial, but still mind-consuming nonetheless. (On a positive note, however, I AM doing well with the 50,000 words for NaNoWriMo - I'm at 33,365 words, despite the fact I didn't write for nine days due to surgery. I'm on track to finish the challenge this year!) But when my mind cannot stop turning, as it tends to do, and more and more things are added, I let little things slip by. I let my son eat tater tots and cheese for dinner. I do laundry once a week instead of twice a week. I wear the same shirt three days in a row. Basically, I become a mess without letting that mess interfere with my OCD tendencies. It happens.

What shouldn't happen, however, is allowing my overwhelmed mind interfere with my serious parenting decisions for James. It did the other night, in a way that seems very simple but is actually not simple at all, and it's something I want to talk about.
One small incident that opened up my mind even more.Collapse )

A pink cup in and of itself isn't a big deal. But my reaction was. It was a teachable moment - and sadly, more for myself than for my son. And that's not a mistake I plan to make again.

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