Hiding

I've been quiet lately, partly because I've been in the mountains without a computer, partly because I've been busier than I thought posible, and partly just because I was trying, for a little while, at least, to have some normalcy and time away from cancer. So, I haven't blogged. I've taken a ton of pictures, I've read some lighthearted stuff, I've traveled with my husband, and I've tried to pretend that I'm a normal 33 year old, not a 33 year old who has cancer. Again. Still. Whatever.

I got to thinking about this, first about a week ago, but more so today. I was sitting here, on my front porch (which I adore!), and I realized that I have been identified in my medical records as a cancer patient since Aliceon started school. That, for half of my marriage now, I have been a cancer patient. That, for more of my children's lives than not, I have been a cancer patient. I have been engaged in this battle for as long as Heather can remember, and almost as long as Aliceon can. They don't recall a time when Mommy wasn't "sick" in some capacity. They have spent chunks of their lives sitting by me while I recover from this, that or the other medical treatment, all, in some way, related to this stupid cancer.

And it pisses me off. This is not what I wanted to bring them into. This is not what Hans signed on for. This is not what I  signed on for. It's not fair.

Now I'm in another waiting session. I'm all calm and cool on the outside, pretending that everything's fine, pretending that I'm not worried, pretending that all is well. But it's not. My doctor - my local doctor - called me last  Wednesday afternoon to discuss my ultrasound with me. She agrees that it's something that we need to be aggressive about, to the point that she suggested that we possibly do the biopsy here, sooner than my appointment at MD Anderson on June 25th, just in case. She agreed that vascular tissue is worrisome, and that it's something we don't want to play around with. She also decided to go ober my initial ultrasound she ordered again, just to make sure nothing was missed. Friday, while I was out of cellular range, she called me to tell me that she had looked at the ultrasound, and that there was "something [she] need to discuss with the radiologist." So I don't know if that means that they missed something initially in October, or if she just wants to be certain there was nothing there, but either way, if there was something then, the I-131 should have taken care of it and didn't.

But, of course, most people don't understand the fear and the worry and the waiting, so I'm back in my hiding pattern. Today is a perfect example - I have been nauseated all day. Now, I'm about 99% sure that it's psychosomatic, caused by stress, and the fact that I gave my body a chance to slow down. Instead of saying anything, though, I blamed it on something I ate, or told everyone I was fine.... Because that's what I do. I hide. I can't be weak. I can't be vulnerable.I can't need....

Getting somewhere

Have I ever mentioned how much I love my endocrinologist? Seriously - if you're in the New Orleans area and need an endo, I highly recommend Dr. Friday!

I sent her an email this morning letting her know that I wanted to get her thoughts on the results of the ultrasound I had, since I hadn't heard from her and seemed to be getting blown off a bit by MDA. She called me back this afternoon and we chatted a bit.

It was a really good thing I had emailed her, too - she never got the results! Her office kept saying they hadn't gotten them, which means there's a very good chance they're lost somewhere in the shuffle, either the imaging center assumed that she could access them there and never sent them up, or the office staff has misplaced them. Either way, she hadn't seen them. When I told her that I had a copy of the report and of the disc, she asked me to read her the report. She agreed that the vascular tissue was not there in October, and that it's more than a little concerning. When she found out that I was going to have to wait till June 25th to see Dr. Sherman and get the biopsy, she offered to do it here sooner, because she feels that we shouldn't wait a whole month before seeing what the hell this is.

Her point was the same one that I have read over and over, and the same one Cindy, my old endo's nurse made - vascular tissue, especially where there was previously none, is troubling because it's a living, breathing thing, siphoning nutrients from me to try to grow. She also said that it's most likely cancer, but that she can't be sure if it's actual thyroid cancer or something else.

So she's giving the other doctor a call (evidently they're friends enough that she calls him to chat about cases) and find out what the heck is going on, and why I've been given three dates, each later than the last.

So we're getting somewhere. She validated my concerns, which I needed after being made to feel like a whiny idiot yesterday. Now to wait for her to call me back later this week....

In Limbo

On Friday, someone from MD Anderson called to tell me that my appt had been moved from June 4th to June 18th. I freaked out a little bit because it's an additional two weeks to wait, and waiting is not something I'm very good at. So I tried to call back and couldn't get through. Then, yesterday while I was at lunch, someone called again. I tried calling back, left a couple of messages, but heard nothing. Today, in the 45 minutes that I was in the school for Aliceon's Superintendent's Honor Roll Breakfast, they called again, but this time to tell me that the appt had been moved to June 25th. Again, tried calling back the numbers I was given, but couldn't get in touch with anyone. Finally, I went through the main number and talked with someone who isn't connected with my case. They couldn't tell me why my appt was being moved, except that "the doctor said to."

Not cool. I talked to the nurse for my old endo yesterday and told her what was going on, and she confirmed some of my fears - that there's a less than 1% chance it's not cancer, that all my previous ultrasounds had, in fact, been clear, and that it growing since rads is a bad sign.

So, of course, I'm a little more anxious. And now I'm being told another month. Which means I am rearranging all of my schedules yet again. It also means that much longer of daily panic attacks, that much longer of worrying, that much longer before any treatment is begun. And, of course, it means that I will be going to Houston the week before the kids get back....

I don't like this. I don't like this at all. I'm scared, I have been living with the knowledge that the cancer is still there since December, and I want it out. I want to be able to live my life again... .

I just received a call back. Evidently someone was perturbed that I was upset at being rescheduled, and is now rescheduling me again, hopefully for a sooner date, but will now not be able to tell me anything.

I'm just so frustrated. I have been in limbo for 6 months. I need to be able to do something. I need to stop having to sit on my hands....

Frustration...

I know I already posted a blog today. But that was earlier. It feels like a different day now....

I'm frustrated. I woke up this morning with energy. I started cleaning and doing things. Now, though, I've hit a wall. I'm crashing. I'm trying to decide whether to stress my system out by ingesting a lot of caffeine so I can accomplish all the things I need to get done before I go to bed tonight.

My mood is still pretty good, though, in spite of the frustration. It's the thing I hate about all of this - I can be going along, feeling just fine, then BAM! I'm done. Wiped. No energy. Right now, I barely have the energy to keep my eyes open. There is so much to do, though, and doing just a little each day doesn't help, because I end up doing the same little things each day. Then, it's just the minimum of dishes or laundry that ever gets accomplished.

I want my energy back. It was so nice to be able to make it through the day without falling asleep in my chair...

Today is a new day...

I woke up this morning feeling so much lighter, so much happier. There's still that funky feeling in the pit of my stomach that I carry around with me the whole time I deal with the prospect of what's next with this cancer, but I feel better.

Yesterday was a good day. I got to see and hear things that made me truly feel loved and supported. I had a round of intensive therapy that helped tremendously (AKA I watched the rest of Grey's season 7 - the musical episode? Yeah, sobbed the entire time!!). Dinner out reconnecting with someone that I wasn't sure I wanted to reconnect with, but that I'm glad I did. A wonderful evening with my husband, feeling so very loved and cared for.

Yesterday was a good day. Today will be a good day, too. I can feel it. As long as my phone doesn't ring, as long as I don't have to deal with anything beyond cleaning my house, as long as I can concentrate on that and forget the rest, today will be a good day.

Good days are a gift right now. So many of my days, as some of you well know, aren't. Some days, getting out of bed is just about as much as I can handle. But I have to push through - I have kids that need me, a husband that needs me, a house that, if I truly did nothing, would be so much worse than it is. On those days, I do what I must, and I just let the rest go. But then that adds to the anxiety... what if someone stops by? What if I have to go somewhere on short notice? What if, what if, what if... The stress of what if wears me out all on its own.

So on days like today, good days, I try to cram in as much as I can. I know I'll pay for it. I know that I'll spend the next two days wiped out. But it's worth it, to get on top of everything, it's worth it!

I am...

I'm thinking about a very special little girl right now, and something she did before she died is resonating in my mind at the moment. Delaney, you inspired me to do this.

I am a wife.
I am a mother.
I am a lover.
I am a fighter.
I am a yeller and screamer.
I am a basketcase.
I am a crocheter.
I am a creator.
I am strong.
I am capable.
I am alive.
I am scared.
I am sad.
I am happy.
I am confused.
I am a friend.
I am a woman.
I am a sister.
I am a writer.
I am a photographer.
I am a good listener.
I am a talker.
I am supportive.
I am in need of support.
I am a neighbor.
I am Kerry.
I will not give up.
I will not give in.
I will not quit.
I will not die.
I will not hide.

Crying

Sometimes that's all you need. Sometimes you need to cry. Sometimes you need to just cry to remind yourself that you can still feel normal. Sometimes you just need to cry.

Sometimes, though, you need someone to cry with you. Sometimes you need to know that the one person that you need to lean on is just as scared as you are. But they're too busy trying to hide that they're just as scared as you are to be the support that you really need. And they don't turn to you to support them because they don't want you to deal with your own fear and theirs as well.

What they don't understand, though, is that the best way they can support you, the best way they can help, is to let you know. To show you that they're afraid. That they care. That, if heaven forbid, something were to happen, that it would affect them. What they don't understand is that, when you say, "I'm scared," what you need to hear from them is, "So am I." Sometimes you need the support of shared experience, shared emotion.

When I was first diagnosed, back in 2006, one of the times that sticks out most in my mind is one night, when I was terrified. We went to bed, and I was just terrified. That night, Hans held me all night. He told me he was scared. He told me he was afraid of what would happen. He told me that he was scared, too. That night, I have remembered that night for six years. I remember that night as the most important of our entire relationship thus far, because we shared that. We shared the fear, the emotions, the experience.

Today, that is what I need. I need to know that I am not the only one that is scared. I need to know that I'm not the only one worried about what comes next. I am terrified. And I need to not be alone in my terror. I need to know. I need to matter.

Forgive me...

It's one of those days. I have a feeling there's going to be a lot of "those days" between now and June 4th. I think that I'm going to have to learn to lean on others in way I've never had to before. I'm a mess. And believe me, that's not easy for me to admit.

So, instead of doing the six million things I need to be doing, I'm curled up in my chair, finally watching season 7 of Grey's Anatomy. And I'm bawling my eyes out. At first, when I thought about it, I wondered if it was a good idea. But I had this overwhelming need. This need to, I don't know, allow myself to let go. And then I started watching it. And crying. And laughing. And feeling all these emotions, all these feelings that I have been fighting against. I've been fighting against all of it because I'm scared.

Fear. I've talked about it before. It's so hard for me. I don't like being afraid, because fear means loss of control. Fear is letting others in. Fear is admitting that I just can't do it all myself. And I can't admit that. Not out loud. Because, again, that's giving up control. And I have so much that I can't control, so much that is completely out of my hands, that sometimes it feels like my emotions are the only thing I can even try to control. So I try. And I fail. Repeatedly.

Today, I went to a program at the girls' school. That's the only thing I could handle today. I came home, I did some laundry, I started cleaning up a little, then gave up. I sat in my chair and started watching all the many episodes of Grey's that I've missed.

It was good. At first I cried. I thought it was a bad idea. But then I realized that crying felt good. I haven't allowed myself to actually cry, not for more than a few seconds, since all this started way back in October. So I watched pretend doctors save make believe patients in an entirely fictional hospital and I cried. I cried and cried and cried. Suddenly, I was laughing. It was such a good thing.

It's amazing. While watching something that I thought would be way too close to home, I felt better. I felt more energy and more peace than I've felt in ages. It allowed me to express emotions. It allowed me to let go of a few things. It allowed me to forgive a few things.

So now I know what my therapy will be - I will be catching up on Grey's in my free time... And I will be working on forgiving things and letting things go....

Positivity

This is something that has bugged me for a while. Something that other people in similar situations may get, but other people may have no clue about - being positive.

One thing that I hear over and over and over from people when they ask how I am, and I make the mistake of telling them the truth, is, "Just stay positive!" or some incarnation of the same phrase. Each time, though, it irritates me because of what it insinuates. It insinuates that I don't want things to be better, or don't think that they will be.

Here's the thing, though - one can be positive without being happy 100% of the time. As a matter of fact, to stay in a positive frame of mind, sometimes you need to have time to be unhappy. Otherwise, it all gets bottled up and exacerbates any situation. And I am positive. I really am. If I weren't positive, I would spend all day, every day, curled up in bed, not taking care of the kids, not taking care of the house, not going out, not doing anything. Now, that's not to say that I'm up every day doing all those things - I am depressed, I will admit that - but rather, that I haven't stopped doing everything; that I'm still living my life. I do what I have energy for, which, some days, isn't much, but I put forth the effort.

Some days, though, like the other day (Friday? I think so.), it's just too much. It's just too much to deal with anything more than breathing. Having days like that doesn't make me a negative person. Having days like that does make me a human, going through a very difficult situation. Heck, some days people feel like that even when they're not going through major life issues! Some days you just need to be not happy. 


Here's the other thing - I am also a realist. That means that I accept the fact that I have cancer. It means that I accept the fact that, because I have cancer, there are other things I have to deal with. It means that I know that I will have to spend the rest of my life talking with doctors and nurses, managing my own healthcare to the best of my ability. Accepting that I have cancer is not the same as giving up or being negative. It's accepting reality and then finding the will to make it work. Every day I do that. Every day, I wake up in the morning and take my pills. Every day, I get up and take care of my kids. Every night, I take more pills and go to bed. I go to the grocery, do the laundry, cook the dinner, clean the house. I go to lunch, and dinner and on dates with my husband. I talk with friends, I play with my kids, I do my hobbies. Every day. Every day I do something. If I weren't positive, if I didn't have a positive outlook, I would just give up. I would go to bed and stay there. I wouldn't do any of the things I do.

So don't mistake my fear, pain, sadness or anger as a negative attitude, because it's not. It's emotions, and they're healthy and necessary. Because, regardless of how they're expressed, everyone has them, the only difference is how we deal with them. Bottling them up doesn't help anyone.

I do know, though, that when people say that, they mean well. So I try very hard not to get upset. I know that sometimes, we just don't have the words to express what we're really thinking, or we're afraid of situations, or uncomfortable. But really, I would much rather hear, "I'll keep you in my thoughts," or just a simple, "I love you," than, "Be positive!!"

So, in closing, I am positive. I'm also realistic and know that I am sick. And I'm okay with it. Because I know one thing to be true: I will not die! Not any time in the very near future, anyway, and, most likely, not from thyroid cancer. So, until I do die, I will continue living. Know that. Know that I am living.

Cue Muppet Flail

MD Anderson called today. I have been waiting for this call for weeks, but wasn't expecting it until the middle of next week. So imagine my surprise when I was standing at the register at the Target Pharmacy, paying for my prescriptions when my phone rang and I saw it was them... I, quite literally, started shaking. 

Jenny, the pharmacist, was so wonderful. She rang up my purchases, did everything she could to help me, handed me paper and pen, and then, when I was off the phone and breaking down, she came out and just held me, telling me how much they've all come to love and care about our family, and that she knows everything is going to work out. Because I was so upset, she offered to call Hans to come get me, or she would shut the pharmacy down and drive me anywhere I needed/wanted to go. I can't even begin to express how much that meant to me - that someone who barely knows me, cares enough to do so much....

But I digress, I just had to tell you all how wonderful Jenny (and James!!) at the Target on West Esplande in Kenner are. They really are just fantastic people.

Back to MDA...

So anyway, Claire, a sweet girl in the internal medicine department, is the one that called. She was so calm and patient with me, accepting my freaking out as just par for the course! She told me that the doctor had just come back into town yesterday, and that he wants to see me at his next available appointment, which is June 4th at 9AM. He's already ordered bloodwork, a CT scan and a fine needle aspiration biopsy. As soon as she mentioned the biopsy, I lost it. I think I may have mentioned it here before - those things scare the ever loving crap out of me. The first one was bad enough, and in those days, I had no idea what the needles looked like, or what they were doing. Now, though, I do. I've worked with those needles. The fear I feel for them, while irrational, is incredible. Overpowering.

I have to admit, the level of urgency that this appointment was scheduled with scares me a bit. Dr. Sherman just got back to work yesterday. By 10AM this morning, he had already reviewed my records, ordered the tests, and told his staff to book me for his next available appointment. Part of me thinks that that's just how they operate, but there's that other part of me that knows I'm not the only patient coming across his desk, which is why they told me it would be 7 days before they called.... And he's The Best. He is The Name in Thyroid Cancer. He helped write the guidelines on treating this disease. He knows his stuff....

So anyway, there's the update of the moment, at least the best my brain can manage. I'm scared and excited and relieved all at once. This is a hugs step, and every time I see that I'm being taken seriously, after so many years of being ignored, it feels like a simultaneous kick in the gut and pat on the head....

The beast that lurks beneath....

With this cancer, there really aren't that many physical symptoms that you notice. For me, right now, fatigue seems to be the only real one at the moment. Most of the physical symptoms of thyroid cancer are actually a result of the treatments, not the disease itself....

Emotionally, though, it can really take its toll. For me, it's depression and anxiety. Usually, I can deal with both of them fairly well. I adopt a "fake it till you make it" attitude, and power through my days. Not as much gets done as I'd like, but I'm not out in public, dissolving into a puddle of tears (usually, anyway) because the grocery is out of the bread I want....

However, the past week, the depression and anxiety have had me by the horns. I have found myself having to take my rescue medications daily, sometimes more frequently. That's highly unusual for me - I normally make a prescription of my anxiety meds (30 pills) last a year or so. And with the depression, there's just a lack of desire to do anything. I could, quite literally, sit in my chair all day long, drifting in and out of sleep.

I keep trying little things to push myself a bit more. Today was an anxiety day (there have been some situations lately that have ramped it up into the stratosphere), and even after taking my meds, even after a glass of wine, I was still just a all of nerves. I was so anxious that I was shaking visibly. I couldn't figure out what I could do to deal with this!  Then I remembered my rocking chairs....

You see, since we moved into this house, with its front porch that spans the front of the living area, I have wanted rocking chairs. I adore sitting on the porch in the afternoons while waiting for the girls to get off the bus, or sitting out there while they play with friends. My front porch has become a haven of sorts, too, where I sit with neighbors, chatting, crying, and just getting to know each other and learning to support one another. I love my front porch. I haven't, however, loved the ratty, tatty old camp chairs we had out there. I mean, they're great for backyard barbecues, but the just weren't front porch worthy. I'm a good Southern girl - we have our public space priorities.

Knowing this, Hans and I have been looking at rocking chairs since we moved. We hadn't bought any yet because, frankly, we hadn't found one we liked in a color we wanted at a price we were willing to pay. Our grocery store, though, of all places, had one that fit the bill completely!  The rockers are wide, wooden, black, and half the price of all the others we'd looked at!!

So that was my Mother's Day gift - two rocking chairs for the front porch. The girls were over the moon - they were so excited to be giving me something I really wanted for Mother's Day! Of course, they didn't get put together on Saturday, because Hans and the girls were too busy trying to clean the house for the short amount of time I was out running errands, but that was okay!

It was mostly okay, though, because it gave me something to do today. This afternoon, after I got home from my required running around, I was sitting here freaking out more and more and more. I couldn't figure out what I could do to calm everything. I wasn't feeling inspired to write at the moment, everything I was reading was annoying me, and I had less than no desire to watch TV. Then I remembered - the rockers!  They needed to be assembled! I figured they couldn't be any more complicated than the Ikea furniture I've put together over the years, so I got started. Pretty soon, my chair was halfway, and my body was shaking a lot less!

As soon as I got the first one complete, I proudly carried it out to the front porch, and gave it an inaugural sit. Perfect! So I came in to get started on the second one!  I was on a roll, too - the more I worked, the better I felt!

During this time, two neighbors dropped by, both just sweet as sugar. First was Miss Janice, who is moving at the end of the month, and whom we will miss dearly. She came by to thank the girls for the lovely hibiscus they picked for her, and we stood chatting a bit, talking about Mother's Day.

Then came Miss Kathy from the corner. Now, ya'll, this lady has been an angel to me the past few weeks. Such a pillar of strength and support! She's the one who came and sat with me in radiology as I waited for my discs to be burned, the one who has brought me daiquiris when I'm down, and the one who sits and listens when I just need to cry. She's a nurse, so she understands when I start speaking jargon, which I'm wanton to do when I'm on a roll about something....

So she came up, and we were talking about this and that, as usual (Hi, Kathy!). I ushered her over to the solitary rocker on the porch, asking her to be the one to sit in it.... It was so nice, to sit on my front porch, with friends, and rockers..... And slowly, slowly, slowly, between the building of the rockers and the chatting with neighbors, I felt the weight of the anxiety starting to lift.

It's still there, mind you, in the background, like a migraine that just won't let go completely, but, for tonight anyway, it's manageable. And I have front porch rockers to look forward to tomorrow morning with coffee and tomorrow afternoon while waiting on the bus. In the meantime, though, I should get some rest. Tomorrow, I plan to tackle my anxiety by cleaning my house!

Happy Mother's Day

It's Mother's Day, one of two days out of the year that I get to not have to be the one doing everything. One of my favorite days.

This one has started just like they have for the last few years - breakfast in bed! Today, it was Chobani, mixed fruit, croissants and my giant mug of coffee (seriously - this thing holds the entire six cup pot of coffee that I make!) and a rose from our yard - perfect!

Still, as I sit here, smiling, being grateful, being as happy as I can be, I can't shake the anxiety. I can't make that feeling of everything coursing through my body way too fast go away. I can't calm the churning in my stomach, the knots, the butterflies. I could take some Xanax, but I try really hard to not take it often, as I don't want to end up having to take higher doses later to control things. But I just don't know what else to do.

I don't even know why I'm writing about this. I know that, when I opened the window, there was something I wanted to say, something I wanted to talk about, but my thoughts are so disjointed that I can't even remember what my initial intent was. All I know is that I wanted - scratch that, NEEDED - to write this morning. Something is weighing on me, and I have to try to cope with it. I have to try to figure out how to deal with this.

I think it's the waiting. I have nothing to do now but wait. Everyone who knows me well knows that waiting, patience, is not my strong suit. I can't stand the out of control feeling that comes with having to just sit here and wait, while someone else is studying me, deciding how to move my life forward.

I try not to stop everything while I wait. I try to go about my day, as normally as possible. And, evidently, I do a decent job of it publicly. There are so many people that have no idea anything is going on, no clue that, on the inside, I feel like the creeping alien fetus from Alien is trying to burst out of my gut. But that's exactly how I feel.... And I hate it.

I hate waiting, I hate feeling this much anxiety (seriously - this is worse than being on Bourbon in the middle of the crowd during Mardi Gras). I hate feeling out of control. I hate that I have the reason to feel this way. Mostly, though, I hate feeling so lonely in it all. I hate feeling like the only way I can get all these feelings out is to blog. It feels wrong, somehow. It makes me feel like I'm seeking attention, pity, but I'm not. That's the last thing I want. I just want to try to work through my feelings and, in the meantime, inform the people who want to know what's going on.

So, here it is, Mother's Day, and I'm fighting my own brain, when I should be relaxing and reveling in the love of my husband and children....

Crushed....

Some days it's all just too much to deal with. Some days you just need to be able to curl up in a ball and cry.

I try so hard, so very, very, very hard to hide everything. I try not to break down in front of people. I try to hide my fear and my pain. I try to hide the fact that dealing with all of this is causing depression. I try to just be normal and happy. Some days, though, I just can't do it anymore.

Today is one of those days. Today, I am lost. I am in the bottom of a well, and I can't even see the top. Today I feel so beaten, so alone, so scared that I am paralyzed, metaphorically speaking. Physically, I feel like I'm trying to slog through jello.

My house is a disaster. There are dirty dishes in the kitchen, dirty laundry in the laundry room and clean laundry in the living room. There are things everywhere. Everywhere someone has put something down, it's been left. I should get out of my chair and do something about it. I want to get up and do something about it. I even envision myself in this whirling dervish cleaning frenzy. But I can't. I just can't. I try, and after a few minutes, I'm so exhausted, I have to sit back down. And of course, that depresses me more....

I took my medicine that's supposed to help me deal with this. It's not helping. All I want now is to curl up in the bed and pretend that nothing exists. Go back to the dream I was having where I was back in band, and I was being praised for buying my own conductor's baton. I was happy (obviously, not back in real high school, where I was tormented). I felt like I had something to share with people; a talent that could be appreciated. And I felt like I was surrounded by people who liked me. I want to curl up in bed and go back to that because, right now, I feel so utterly and completely alone that I'm willing to go to an imaginary place in my mind....

I cannot cope today. I am a mess. My brain is a jumbled up mess. My heart feels like it's in a million pieces. I feel like a failure as a human, a wife and a mother. I feel like a burden. I feel unworthy. The physical ramifications of my emotional state are wreaking havoc on me at the moment. I want to crawl into a hole somewhere and hide, to keep myself away from anyone else, lest I either be pitied or hurt further....

I'm afraid. I know there's nothing I can do to change anything right now. I know that I have to wait until the doctors have figured out what to do next. I know that worrying isn't going to fix anything. But yet, I worry. I have no other way to feel about this, and pretending to be happy, and cheerful and hiding the fear and pain has taken its toll.

I'm broken. I want to do nothing but cry. I want to curl up in a ball and cry until I feel better. I want to curl up in a ball and cry until someone sees fit to drag me out, to make me feel like I'm useful, like I'm worthwhile. I want to be babied and told it's okay to be afraid of the monsters in the closet. I want to be told that it's okay to worry and to freak out. I need that. I need permission to stop being strong. I need to know it's okay not to always be the one that people look to. I need to be comforted, not comfort others.

I need to be selfish. I need to be extraordinarily selfish. There's a problem with this for me, though  - that requires me acknowledging this need somwhere besides this blog. That requires me to tell someone else - face to face - that I need help. That requires me to make myself vulnerable to someone else. And really, I don't know that I have the strength for that, either.

I'm such a contradiction right now. I know that. I know that I'm saying "Pity me!!!" in one breath, and then "I don't want to be pitied!!!" in the next. I know that I don't make any sense. I know that I probably just seem like I want to be miserable. I don't I hate this. I hate the way I feel right now so much that I can't explain it beyond saying I want to hide.

I'm scared. I'm alone. I'm broken. I need love. I need support. I need understanding.

I. I. I. I. The fact that this is all about me pisses me off. But I don't know what else to do. I'm shattered... .

Status Quo, at least for now....

There are days right now that are so hard, I cry on and off the entire time the kids are gone. On those days, no matter where I'm going, or what I'm going to be doing, I don't bother putting on makeup; it's an exercise in futility.

Tuesday was one of those days. I was having lunch with my mother in law and her mom, as we do about once a week. Usually, I put on makeup, make myself look nice, and even if it's a rougher day than usual, I paste on my smile and enjoy myself. Yesterday, though, yesterday was so bad that it just wasn't happening.

I had called MD Anderson to see if they had received my records yet, and found out that, because the records company had mailed my records instead of faxing them as requested, it would take weeks for them to go through the proper channels to get to the endocrinology department. I was devastated. After last week's ultrasound discovery, I just couldn't deal with more waiting. Still, I didn't know what else I could do, and I needed to get ready to go.

Lunch was great, enjoy spending time with Suzi and Grandmommy. It's always so nice to go to a restaurant and sit down for lunch, instead of munching popcorn as I rush around trying to get things done. (Not that I ever get anything done anymore). After lunch, I decided to run by the hospital to pick up the reports and discs from my ultrasound and swallow study. That was a double edged sword, let me tell you!

I get there, and everyone I came in contact with recognized me. Now, it's great to be recognized, but I'm not sure that medical staff is who you want recognizing you when you've only lived somewhere for 10 months! Still, it's comforting. Jeff tells me, too, that the reason they remember me is because I'm still a smiling, happy person when most of the people they deal with aren't (understandably so! I'm just a hella good faker!). Kathy tells me that part of it is that I'm young, and part of it is that I'm happy (paraphrasing here, guys!). I certainly hope it's that, not something else!

So anyway (yeah, I've been writing this post for three days now... distracted much?), they send me over to radiology to get all my goodies. No big deal, I know the way. Walk in, and again, instant recognition.

At this point, I should back up for minute and explain something from last Friday - as I was sitting on the front porch with Kathy and Michele (neighbors, who have fast become my girlfriends here), drinking my daiquiri, I see the lady with the weimeraner that I have noticed many times before. Then Kathy says something about "Pam." Instant recognition, "Wait, did you say Pam? Does she work in radiology?" Yep, one and the same. So with these two women sitting on my front porch, I run into the street, calling poor Pam's name! Now, you know as well as I do that she probably sees hundreds of patients every single day, so I'm not really expecting her to remember me. She did, though!

Okay, with that bit of information disseminated to you, I can carry on....

So anyway, I tell the girls at radiology why I'm there, fill out the release, then have a seat. A few seconds later, the door opens, and out walks Pam, still suited up in her lead apron, come just to give me a hug!  It meant the world to me, let me tell you, because I was feeling very alone and scared at the moment! So I text Kathy to tell her how sweet that was of Pam. Next thing I know, Kathy's in the waiting room with me, chatting so I'm not alone! Then, I find out that the machine/computer/whatever broke, and they're not able to burn my discs. So the radiology manager comes out with Pam, telling me all that has happened, and that someone was going to fix it, but that Pam had offered to bring them to me so I didn't have to stay waiting! Now who, I ask you, does that? It was so sweet and thoughtful of her!

Of course, because this is me we're talking about, and I can never do anything simply, the system was completely broken. As in, they called someone who came in yesterday to fix it and couldn't. So, I still don't have my studies yet. I do, however, have the reports, and those have already been faxed on to MDA. And as soon as they get my happy little discs burned, Pam will be bringing them to me.

On the MDA front - I called the records people yesterday (LSU uses a third party medical records company to store and disseminate their records) and asked them why, if the instructions were to fax records, did they mail them? I was told that they had a "no fax" policy. I, very nicely, explained that, because they mailed it, it would be a minimum of three more weeks before I would get an appointment. If they were to fax them, however, I would be in about 3 weeks sooner, as the fax would go directly to the people it needed to. After I explained the situation, they were able to get permission to fax, and I received confirmation this morning that my records had, in fact, been received at MD Anderson.

So now to wait - Dr. Sherman is out of the country until Monday, so that's the soonest he'll review my case. So it looks like the earliest I will get a call now will be around May 23rd. The plan, as it stands, is to try to make sure they don't schedule me so that I miss any of the Memorial Day Weekend festivities, though - we have my brother's high school graduation on the 25th, and Hans' cousin's wedding on the 27th, and they're things I really want to be a part of.

So there it is. An update wrapped in prose and topped with a liberal dose of superfluous parentheses....

Need something to go right, please....

Called MD Anderson this morning to find out if they had received my records yet, since they were mailed from the LSU records people (in Wisconsin - how stupid is that??) on April 24th. Because they were mailed, it takes longer for them to get to the people who need them. Why the records people for LSU couldn't just fax them, as I stated on the request form, I have no idea. I gave them the direct fax number. I didn't have an address; they had to look that up themselves!

So now, knowing that there's tissue there that wasn't there six months ago, I have to wait, all because someone couldn't be bothered to follow directions.

I need a break. I need to run away. I need something. I am freaking out.

How are you?

That's a question I get asked a lot - "How are you doing?" "How are you feeling?" - and I rarely know how to answer. Partly it's because I know that the vast majority of people can't really handle the answers. Partly it's because sometimes, I just don't know. And partly, it's because the answer is actually so mundane most of the time that it feels odd to say.

You see, physically, there's not much I'm feeling. I'm inexplicably tired, I'm run down a bit, and my brain isn't working at 100%, but I don't hurt. I'm not in pain. There's nothing to see. There are so few outward manifestations of this cancer that I look completely normal. Even during treatment, aside from looking a little sick and exhausted, I haven't looked like a "cancer patient." I have hair. I'm not wasting away. I just look like me, only more stressed.

Emotionally, though, that's another story altogether. Emotionally, I'm on a roller coaster. I go from being completely blase about it to crying in seconds, with the oddest things setting me off. I feel, very often, like my body is flying apart at the molecular level. All day yesterday (and I feel it starting right now), I felt like there was lightning in my brain - I couldn't concentrate on any one thing for more than a few seconds at a time. I have been making silly spelling errors (I'm a freak about spelling and grammar). I have been losing words. I'm not sleeping without medication, and sometimes that's not even enough. I feel isolated and alone, even though I'm literally surrounded by people supporting me. I'm scared and angry and sad all at the same time. I want to rail and scream and cry, but I want to be strong and stoic.

So, if you ask how I am, and if you really want to know, say so. Say, "How are you? Really?" But, if you add that "really" on there, please, be prepared for the real answer. Because, right now, I find I need to talk. I may be repeating myself over and over and over again, but I need to talk. I'm scared, and I need to process. And if we're face to face? Please give me a hug. Because when I feel like everything in my being is flying apart, I rely on hugs to hold me together.

I know, it sounds odd, but hey, this is me we're talking about, right? I'm pretty odd!

Dr. Ivan Rosado

I have a statcounter here on my blog, so I can see when some people visit, and if it's via a Google search, I can see that, and what they've searched for. I've noticed that, over the past six years, there have been a lot of you that have ended up on my blog by doing a search for Dr. Ivan Rosado in Orlando.

I would like to take this opportunity to say a few things about Dr. Rosado. First of all, he is an incredible surgeon. He did such a fantastic job with my thyroidectomy and removing the metastasis to my lymph nodes and parathyroid that I had no appreciable residual tissue, and was considered cancer free for a little over five years. Second, he is such a caring doctor. In my experience, surgeons, especially ones with tricky specialites, can be egotistical and have poor bedside manner. Not Dr. Rosado - he took all the time my husband and I needed to explain exactly what he was definitely going to do, what he might possibly have to do, and what he would not do. He explained all the risks, he outlined why he would take each course of action he would take. He came into pre-op before my surgery to talk with me, calm me down, and assure me that he was going to take good care of me. After the surgery, as I was in recovery, he went to my husband and told him everything, explaining all the details of the metastasis, all that he had had to do, and what my recovery would likely be like. Then, when I was fully awake again, he came back to the hospital to explain it all to me and be sure that I fully understood.

When, three days post op, I was hypocalcemic because he had had to take two of my parathyroids, he got me into the hospital right away. He wasn't the on-call that weekend, but he came in to get my treatment started (this happened on a Friday afternoon). On Sunday, when the on-call wouldn't agree to release me until Dr. Rosado had seen me the next day, one of the nurses on the ward called him. He came in, on one of his rare days off, to release me so that I wouldn't miss my daughter's first day of Kindergarten.

When it was time to check the incision and remove the remaining stitch (only one at one end that hadn't dissolved), he was gentle, and kind, making sure that I was comfortable. When it was time to come for my last appointment, he gave me a hug and told me he hoped to never have to see me again.

So, if you're reading my blog because you've googled Dr. Ivan Rosado in Altamonte, Florida, I say this - go to him. He is phenomenal. I may soon be doing a radical neck dissection for my recurrence (not recurred because of anything he did or did not do, but because of my age and the initial metastasis), and I have been seriously considering travelling back to Orlando from New Orleans to have him do it. Go to him. He is wonderful.

The Value of a Strong Support System

I'm so very fortunate - I have such a network of support, it's overwhelming at times. Some near, some far, some old, some new....


I want to blog today, I feel like I need to blog today, and yet no words are coming. I'm not sure if I'm just drained from them, or if I'm just trying to have a day that I'm escaping.

Me, speechless? I know - hard to imagine, huh?  I do want to say this, though - thank you to all of my friends who are offering their love, their support and their experiences to me. It means more than you know....

Ain't That a Kick In the Head?

So yesterday was another day of tests. I went into it thinking that they weren't going to find anything on the ultrasound, but would find something on the swallow study... I was only half right.

It started off feeling odd. I think, though, that, subconsciously, I knew what I was going to be told, because the afternoon before, I picked up yarn and started trying to figure out how to knit again. (For those that don't know, I crochet. I'm kick ass at crocheting. Knitting, though, I've never really gotten the hang of. Until now, evidently.) So, since I had started a dishcloth the afternoon before, I brought that with me. Boy was I glad.

I got to the imaging center at the hospital, signed in, then sat down and started knitting. After a few minutes, I was called up, but someone had put in my chart that I was male. Which, of course, as is evidenced by the boobs I proudly display, I am not. Still, no bigs, the girl and I had a good laugh, and she fixed it. So we did the little bit of paperwork - essentially just the privacy and consent to treat stuff, standard fare with anything medical now - and she sent me through the labyrinth to the radiology department in the hospital with all my paperwork.

Got to radiology, give the nice lady my paperwork, sit down and start knitting again. After a couple of minutes, I hear her on the phone talking about me. I kept hearing, "not on our schedule," and "they sent her to the wrong place!" and I start to panic just a little. Then, she called me up, and told me that I was supposed to go back to where I came from for the ultrasound, then come back here after for the swallow study. She apologized profusely, but still, I wasn't terribly concerned - I had cleared my day anyway because I know how these things can go. Went back to the original location on the other side of the building, gave them my paperwork, sat down, and started knitting a bit more.

This time, someone asked me about my knitting, though - "Is that going to be a headband?" I told her no, that I think it's going to be a dishcloth, but it's really just me practicing. She kept watching, I kept smiling and knitting. Then the older lady across the way started staring. Then another lady sat down by me and watched, too. I felt a little self conscious because, like I said, I'm really not good at the whole two pointy sticks thing, but at the same time, the expressions on their faces were friendly, and I like to think that what was helping keep me calm was calming them, too.

Finally, this sweet, sweet lady comes to get me for the ultrasound. We go in, chatting a bit, and when she says she's going to take a look at my thyroid, I point out that there is no thyroid, just the bed. She was unaware, as somehow, it didn't make it to them that I had already had a thyroidectomy. No big deal, though, they get limited info.

We get started with the ultrasound, and it's just taking longer than it ever has before, and she's typing more than they usually do. I start getting a little anxious, so I start swallowing, which was making it even harder for her to get the images she needed. I kept apologizing, but she kept telling me not to worry. When she was finishing up, I noticed she kept reaching for her in-house phone that was in her pocket... she then starts asking, "When did they remove your thyroid? How many rounds of radiation have you had?" I knew, beyond a doubt, something was up then. If there was nothing there, there would be no reason to ask that.

That's when she told me, "I see thyroid tissue. Here, look." She shows me what she sees - two areas, one on either side of the thyroid bed, about a cm across in size, but of abnormal shape. Then she shows me the doppler - both are vascular. At this point, she tells me that, had I just had my surgery recently, or had I not had two rounds of I-131, she would just assume it was residual thyroid tissue the surgeon had missed. However, none of my previous ultrasound reports, including the one from this past October, note any residual tissue. This is new. This is new since October. This can only mean one thing. She calls the doctor (radiologist? Are they the ones that read and interpret sonography? I honestly don't know), and have him take a look, too, to make sure he agrees with her assessment. He does, but asks her to do another couple of images so that he can be watching in real time (ah, the beauty of computers in the medical setting - it's amazing!!!), and he still agrees - new thyroid tissue, two areas, vascular. At this point, my anxiety is doing some crazy manic swinging - I'm terrified because, holy shit, thyroid cancer is NOT supposed to grow this fast! at the same time, though, I'm kind of relieved in a weird way, because now I know that it's not all in my head - this can certainly be what's making me feel "off," and I'm not wasting time with this appointment to MD Anderson. So yeah, like Old Blue Eyes said, "Ain't that a kick in the head."

So, when we're all done, she gives me a hug, and sends me on my way back to radiology for the swallow study. I get there, but at this point, I'm in such a weird mood that I can't knit - I just sit there staring at Drew Carey and his inane contestants on "The Price Is Right," (am I the only one that, since watching Happy Gilmore, always wants to say, "The price is WRONG, bitch!" on there??). Finally, this super sweet lady, Pam, comes to get me. She also chats me up the whole time we walk to the x-ray room, just being friendly and comforting, telling me exactly what to expect - just a soothing person. We go through the swallow study with the radiologist (man, barium is nasty, but those fake pop-rocks they give you to blow up your gut? Make you want to hurl when they lay you on your stomach, let me tell you!!!). Easy peasy, no structural issues, just some moderate acid reflux making it hard to swallow. Also explains why I get chest congestion when I eat. He says go to a GI, I say that, for now, I'm just going to keep going with my zantac till I get past this other crap. I have enough specialists right now - I don't want to add yet another to the list....

So yeah, there's yesterday. When I left the hospital, I called Hans and asked if I could come to him. Of course, this is the one day that they decided to take an early lunch (it was 11:20 when I called), so he and a few guys (great guys that I love, incidentally) were already at lunch. He told me to come anyway, though, so I did. They had just finished eating when I got there (I don't think any of them know what's going on), so we left and took a walk to get a sandwich for me. He sat with me while I ate, listening to me, then bought me a gelato, and sat there with me while we ate that, listening some more.... Of course, I called my sister, mom and mother in law to tell them, and I texted my best friend (at that point, I was talked out). Then, I got home to a lovely email from the office manager at Hans' office, who knows everything that's going on, too, checking on me and asking if there's anything she can do to help. Everyone's been so supportive and caring. It means more than anyone can know... .

I'm still smiling, I'm still positive, I'm still fighting, but right now, I need to just be angry. I need to be sad. I need to be scared. Thank you to all of you that let me be those things....

Wheels are beginning to turn...

After my last appointment, I went ahead and started the process to get all my records sent to MD Anderson. During that time, though, I started having some pretty substantial swelling of my left parotid gland (for those of you who may not know, you have two parotid glands, one on either side of your face, just over your temporomandibular joint, just in front of your ears. It's a salivary gland, the biggest that you have.). So, I called my doctor, left her messages. When she called me back, she got all the info as to what was going on, then called and talked to an ENT she knows. Called me again, told me all about him, and that they had discussed my case, and that while the parotid issue was probably caused by the radiation (another side effect. yay.), neither of them had an explanation for my swallowing problem, and he would like to see me. Catch is, he is in Baton Rouge, would I be willing to drive there? What the heck, right? Perfect excuse to explore a little more of my new state, I say!

So I jumped through all the hoops to get that set up. At the same time, she had referred me to MD Anderson in Houston for further investigation/second opinion on the persistence of the cancer in my thyroid bed. While my bloodwork is not showing bad at the moment, the fact that there is some elevation (when, at this point, there should be none at all) and there was so much uptake still at one month post dose, she agrees that we may want to be more aggressive, especially given my history. So, she took it upon herself, since I was still waiting on paperwork from her office, to make more calls, print more things out and mail things to me herself. She really is a great doctor. She calls me to check in, she tells me to try not to worry too much, knowing that there's no way I won't worry at all, and she respects that I do my own research and that I keep up with all my own information.

So anyway, records were requested for MDA. That was on April 20th. Today I called to make sure that someone was taking care of that, and found out that the paperwork had been mailed to MDA on April 24th. So yay, less time that I have to wait!  Once they get the paperwork, the doctor will review my case personally, decide what he wants to do initially, the intake group will contact the insurance for any pre-authorizations needed, then they will call me and tell me when my appointment will be. I'm not sure what to expect, but based on the conversations I've already had with people there, I'm sure they'll tell me! Now I just wait. I'm thinking that I should be hearing from them at the end of this week or the beginning of next week.

There's a part of me that's really excited, in a macabre sort of way, I guess, about this. There's something about the fact that I'm going to talk to someone who really, really knows how to deal with my cancer. Someone for whom this is daily. Someone who helped write the guidelines for treating this type of cancer. Someone who can really tell me, more definitively, what the different scenarios are, and what my history means for my future. Until this point, it's all just been educated guesses.

There's that other part of me, though, that's terrified. Terrified because I even have a reason to be making this trip. Cancer sucks, ya'll. It's one of those things that, truly, the treatment often is what makes you sick, not the cancer itself. For me, had they not found it when they did, I would be blissfully unaware. I would be slowly dying, but I wouldn't know it. Part of me is terrified that he's going to tell me that there's nothing we can do right now, that we have to continue to wait. And another part of me is terrified that he's going to be gung-ho and ready to operate right away.

The worst part of all this, though, is the mind games. I say cute things, like, "There's an Ikea in Houston! Yay!" and "I have friends in Houston! I'm just going to make this a fun trip, and the MDA stuff will just be an aside!" I say those things to everyone. I say them to try to convince myself that I'm not as scared as I am, and I say them because, if we're really honest, no one wants to deal with someone else's fear. So there are nights when I sleep like a baby, and then there are nights where it takes me forever to fall asleep because I'm panicking over things way beyond my control. Nights where the dreams are pleasant, and nights where the nightmares leave me crying out in my sleep.

Some days, I kind of wish I were a big drinker or a drug addict of some sort. Then, at least, I would have something to quiet those voices in my head, the ones of niggling doubt and fear. I'm not, though, so I write. And I play with yarn. And, occasionally, I explode and torture my poor, sweet, loving, understanding husband....

Searching for a needle in a haystack?

So today's the day. Today - in about an hour, actually - I go to my endocrinologist. I've been reading the AACE's most current treatment guidelines for thyroid cancer, and I really feel that, based on previous metastasis, persistence of recurrence and current sympotomology, that moving forward with the radical neck dissection is really my best bet at beating this cancer now, and decreasing chance of recurrence later.

Specifically, I had extranodal metastasis to six of the ten central compartment nodes, as well as invasive metastasis to one of four parathyroid glands (in other words, instead of the cancer just surrounding the parathyroid, it actually invaded it, breaking through the parathyroid capsule). Based on that, the surgeon who originally did my procedure probably should have gone ahead with a radical neck dissection then, but wanted to wait, see how I did, then come back. At that time, all the cancer was kicked into the background, and remained that way for at least 4 years. So, at that time, it was the right decision - we need lymph nodes... .

However, the cancer is back. I don't want it. I want it to go away, take a long walk off a short pier, make like a tree and leave, etc, etc, etc. Right now, the best way to get rid of it, since the radiation didn't completely kick its ass in October, is to make travel more difficult for it.

Think of it this way: Cancer is a jackwagon in a little convertible sports car. He loves to drive fast. Best way to drive fast? The interstate.... The interstate of the body for cancer is the lymph system. So, my proposal is to take this jackwagon's interstate away from him. Make him drive his fancy little sports car down dirt roads, if you will. Make it harder for him to get where he wants to be. In other words, take out the lymph nodes in the general vicinity of the cancer's thriving metropolis - the neck.

Best way to do this? Radical neck dissection. It's an ugly surgery. It's a hard surgery. It's the kind of surgery that makes people miserable (not that any of them are a walk in the park!). I'm not proposing this because I think it's going to be fun, or because I want attention or any of that other crap. I'm doing it because, in order to live, and to live the best life I can, this is what needs to happen.

So today I have to go in to my endocrinologist, whom I love, and tell her that I want to do this, and I want to do it sooner rather than later. I'll probably spout off my silly little interstate/dirt road/sports car analogy. She'll probably resist, at least at first. But really, this is what's best for me, mentally and physically. I can't continue to sit around and wait for things to get worse. I don't like being reactive; I like being proactive.

So wish me luck. Today's a hard day.

Screaming Into the Wind

Sometimes that's what I feel like I'm doing - screaming into the wind, the sound lost in my own hair.

I have questions - about my treatment, my prognosis, my staging, my future. Yet, there are no answers to most of these questions. I ask, I get nowhere. I research, I get nowhere. I want answers!  And it seems, some days, the more I look for those answers, the more questions I end up with!

I hate inactivity, too. There is a cancer growing inside my body. It is there, I know it is there, and I can't do a damned thing about it. It's - quite literally - driving me mad. I want it out. I want it out to the point that I envision myself reaching through my neck and yanking it out with my bare hands. Insane? Probably. But it's how I feel.

And yet, at the same time, I feel like I don't have a right to feel the way I do. I feel like, maybe, cancer's not such a big deal. Maybe I should just let it go. But I can't. I just can't do it.

Don't get me wrong - I'm not letting it run my life, not by any means. At the same time, though, I think I am allowed to have some fairly strong emotions and feelings about it all. Right? I'm allowed to be terrified, aren't I? I'm allowed to want it gone, out, over and done with, right?

I'm having trouble swallowing these days. When I go to the doctor tomorrow, I will be telling her that. I will also be pointing out that she felt a mass last time I was in. And I will be pushing for the surgery to remove the "cancer interstate," AKA cervical lymph nodes, along with anything else they find in there that's affected.

My gut, my symptoms and my experience are screaming at me not to delay any further, to stop the "wait and see" attitude. This means that I have to be assertive tomorrow, something I have a very difficult time with. I will do it, though, for me. I will do it alone, but I will do it.

I'm scared, though.

Some days, you just need to cry...

I have gone for approximately a year without a major flare, which has been fantastic, as I fully expected to be laid out right after the move was complete. I guess, though, that my body knew what else was to come, so it held off. Now, though, my time is up - the flare has not just arrived, but it has pitched a tent, built a campfire and invited all its rowdy frat brothers to party.

When I feel like this - everything hurts, from my toenails to the ends of my hair - all I want to do is curl up in a ball and cry. But I can't. I have to find a way to do the dishes and the laundry, clean the living room, sort and deliver the cookies and make dinner.

Ugh. And I don't even know why I'm posting... I guess I just need to whine.

The Fairytale

Foreword: This is a post that has been brewing in my brain for a few days now, and I've just finally found the time and clarity to sit down and put it into words. Enjoy!


I found myself watching TV over the past couple of weeks, and getting depressed every time I saw the trailer for "The Vow." I couldn't exactly put my finger on why, at first, but slowly the realization dawned on me - I was jealous! I mean, here you have a story, supposedly based on real life, where a woman completely loses all memory of her marriage, and her husband loves her so much that he is willing to endure immense pain and heartbreak to get her to fall in love with him again. "I wish I had that," I found myself thinking, over and over and over again. And each time I thought it, I became more discontent, more upset, more irritable.

Then, a little over a week ago, a man I graduated high school with (I won't refer to him as a friend because, while I didn't dislike him, nor do I think he disliked me, particularly, we were classmates, not actual friends. No disrespect meant - in fact, I would feel it more disrespectful to refer to him as a friend, as if somehow trying to make more of a connection to me. He was a lovely man, a nice man, with incredible dimples. A good classmate to have.) died suddenly in a motorcycle accident. When that happened, I found myself overwhelmed with the thoughts of how badly his poor wife must be hurting, how distraught she must be, and how distraught I would be in her shoes. Not once did I think about how Hans would feel in her shoes, though - I didn't think myself worthy of that thought. I even went so far as to tell him that I thought, if something were to happen to me, he would be sad for a month, then move on. I was so upset by this thought, too, that I became angry. Very angry.

I wanted the fairytale, dammit! I wanted to be loved so deeply that my husband would do anything to save me, to protect me, to care for me! I wanted to be cherished and wanted!

I came to a realization a few days ago, though - I  do  have the fairytale.

Think about it: When I met Hans, I was a healthy, attractive, thin, young woman. That's who he met. That's who he fell in love with. In the 14 years we've been together, though, I have become an overweight, sick, angry woman. And yet, he's still here. He still loves me. He still dotes on me, and does so much to provide and take care of me. He didn't leave me when I gained weight. He didn't leave when I was diagnosed with cancer. He didn't leave after any of the three surgeries I've had over the past 5 years. He didn't leave when I was so sick I couldn't get out of bed most days. He didn't leave when I was diagnosed with a recurrence of cancer.

He stayed.

He stayed and he loved me. When I would cry, he would hold me. He would tell me that it will all be ok, that we'll get through it, that he's not worried, never letting me see how any of it was affecting him. He let me think I was the strong one, when in reality, it has been him.

The whole time.

It has been him that has anticipated my needs and met them, whether it was running a hot bath and pouring a glass of wine, or letting me sleep in, or picking up dinner on his way home from work.

See, Hollywood has us convinced that the fairytale consists of all these grand romantic gestures. But it doesn't. The fairytale is made up of the small things that come together to be the mortar in a marriage. The fairytale is staying when it would be easier to go, loving when it would be easier to give up. The fairytale is knowing that, no matter what, that one person is going to be there, to hold you and tell you they love you, not just because of things, but in spite of them, too. The fairytale is weathering the bad times, knowing that the good is right around the corner. The fairytale is what I have, and I'm just sorry it's taken me this long to realize it.

Feelings, Palpations and Palpitations....

Another couple of doctor's appointments this week. Interesting outcomes, to say the least.

Monday was the rheumatologist. We had been outside all weekend for parades, so the rash on my face and neck/chest was highly prominent. So that was discussed a bit, but she wanted me to check with the endo and make sure it couldn't be a radiation side effect (????). I brought up my cold, cold, painful hands to the resident I saw first, and the fact that, to use my touchscreen phone, I have to rub my fingertips on my pant leg to generate some heat, but the resident didn't have a clue what that could be about (hint, sweet resident girl - it's most likely Reynaud's. I know this, but I wanted the attending to bring it up so we could talk about it). I also let both of them know that I have tanked in the energy department again, and have been feeling joint pain and general malaise for about a month now.

The rheumatology attending was very thoughtful about all this, and has decided (and I don't necessarily disagree) that we should continue to hold off on treating whatever the rheumatic/autoimmune issue is until the cancer issue is at least somewhat more resolved. She said that she had read the notes from my last endo appt, and agreed that there is a more than substantial chance that I will be having rads or surgery in the very near future, and starting any of the DMARDs would throw a monkey wrench into those treatment courses. Plus, while I'm beginning to flare, I'm not in an unmanageble flare. So, for now, we're treating symptoms. I have an increase in the dose of my fibro med, Savella (good lord, is that ever making me sick - it's like taking the methotrexate, only the nausea and icky is all day every day!!), and we've added another med at night to help me fall asleep and stay asleep. She's also decided, based on the rash and other symptoms, to test for lupus again. Last time I was tested (SSA antibody test), it came back borderline, so I didn't get a solid diagnosis, but a rather tentative one. This time, well, we'll see what happens... Lupus fits the symptoms better than RA, though, truth be told, but the treatment really isn't all that different.

She's also testing me for Sjogren's syndrome (ie: dry eyes and mouth), but I have no thoughts on whether that will pop positive or not - my issues could be a syndrome, or they could just be a side effect of the radiation.


Today I saw the endocrinologist (have I mentioned that I love her??). Another dose change, but hopefully this one will give me my energy back and curb the inexplicable weight gain and possibly stop the heart palpitations. As for the cancer, we're still in wait mode. I have to wait until April to attempt another scan because of the radiation I received in October. In the meantime, though, we'll keep going with the suppression.

There is a bit of concern, though. While she was examining me, the doctor felt something in my neck. She said it could be just some scar tissue, but at the same time, she hasn't felt it during any of the other exams, and I couldn't swallow with her palpating today. This, while it's scary, could be a good thing, though - something that can be felt by external palpation is something that can be cut out. Something that can be cut out is kind of what we're looking for right now. Still, the prospect, the thought, that there is cancer in my neck, growing and getting bigger, possibly spreading to parts yet unknown, is a bit unnerving and upsetting.

So all in all, it has been one of those nerve-wracking weeks where I have kind of found out some things, but kind of haven't, and none of it is exactly comforting. I don't know what is next, I don't know what to do. Or rather, I do, but I don't want to, because the thought of it scares me. So, for now, I'm continuing to expand my pashmina/oversized super soft scarf collection and sticking my head in the sand....

Acceptance

There is no cure for cancer as of yet. This is an inescapable fact, and one I've come to accept.

I know that others mean well when they tell me if I'd only do this, that, or the other, that I would be so much better, that I would feel so much better, that they read that someone cured themselves by doing ABC. I appreciate that, really I do, but honestly? If it were actually as simple as that, there would be a hell of a lot less cancer patients, and even fewer deaths.

Sure, there will always be people who, despite how it could prolong their lives, can't or won't do the things necessary to save themselves. I'm not one of those people, though. At the same time, I'm also not going to jump on every bandwagon that comes along just because some crackpot with no peer reviewed research says it will work.

I eat well, despite what some may think. I eat fresh fruits and veggies, fresh meats. I make a great portion of our meals completely from scratch. I do all the things my doctors and I have agreed are the best practices for me. And I have a few vices - I will not give up my coffee (and it has been agreed that it's actually beneficial for me, personally, by my doctors). I actually need red meat for the iron and other proteins. Soy is like poison to my system.

So I'm going to keep doing the best I can within the parameters set forth by my medical team (damn, some days it sucks to have a team) and myself. I will get better, but right now I just have to get by.

Brick Wall

I feel like I've hit a brick wall. All the energy I got from getting back on thyroid suppression, and the RA/Fibro remission I got from the radiation seems to have worn off. I'm back to having to drag myself out of bed, and forcing myself to move. Nothing is getting done around the house, and that's driving me crazy. Then I feel guilty because the house is a mess.

I'm not sure if this is just the way it's supposed to be, if this is normal and I just forgot, or if there's something more going on. Has the cancer grown more, so it's sucking the energy out of me? I don't know. Hell, maybe it's just depression kicking in. Maybe it's just a flare (just a flare???). I don't know. All I know is that a pot of coffee and an energy drink and I'm still feeling like I could fall asleep standing up. Seriously. I'm typing this with my eyes closed....

I guess I'll call the doctor tomorrow and see if I can get in a few days sooner. And maybe do some more research into this whole second opinion thing. Maybe I'm just tired of sitting on my hands.

Batten down the hatches!

Another bad night last night. I seem to be having them about once a week lately. My brain goes weird, and I spend all day fighting against it. When bedtime rolls around, I lose the fight, then the fight really begins.

I spent yesterday trying to tell my brain to shut the hell up, but even as I was driving home from the grocery, so proud of myself for going alone on a Sunday and not having a panic attack, I had the urge to rip out my own throat. Again.

Now, that's not as dire as it might sound, I can assure you. It's not a death wish. It's just a "get this cancer the hell out of me!!!" wish. I had finally started coming to terms with the waiting to do anything, but then I took Heather in for a nuc med scan, and started talking with one of the techs there (they're the ones I deal with most, second only to the endocrinologist herself). He was telling me that the endo he works with uses PET scans in conjunction with the I131 scans for Thycan recurrences because (and I have read this a few places in the last few months) post thyroidectomy I-131 ablation, especially in doses beyond 75-100miCu, can cause the body to not uptake in metastasis sites. Now, I had mets the first go 'round, and there's still way too many cancerous cells still showing up in the one month post dose scan this time, so I've been concerned about "silent (if you will) metastasis" for a bit now.

So, of course, that just rekindled my quest for more information, and made me think I really do need a second opinion. But then there's the "friend factor" - I really like my endo, she's awesome, calls me herself to check on me, and is just a likable person; asking for a second opinion (which means sending over records and what have you, and trying to explain that I'm not changing practices) feels like cheating or something. The last thing I want is to piss off or hurt this wonderful doctor who was so understanding and proactive with me.

And this all just perpetuates the vicious cycle - fear, grasping for information, anger and hurt. And makes me want to find a way - any way - to just get these rogue cells out of my body!

Sleepless

I can't sleep tonight. I have all these unhappy, dark thoughts running through my brain, and lying in bed just gives them free reign.

See, every night, falling asleep is a chore for me. It's never one of those "close your eyes and you're out" deals unless I'm medicated heavily or exhausted to the point of dropping. Usually, though, it's just this random stream of consciousness - conversations with myself that I, at some point in the process, find myself thinking, "Hey, wait, how'd we get here?" And then, after about 15-20 minutes of that, I finally drift off.

When there's darker, heavier things on my mind, though, it's not so benign. Sure, I still do the stream of consciousness thing, but instead of the usual, "Hmmm... This pillow's soft. I like soft things. Bunnies are soft. So are llamas. I petted a llama once. I wonder if I could have a llama as a pet in this sub-division....." it becomes, "Grrrr! He makes me so mad! Why can't he understand that I need someone to lean on!!?? Wait, maybe he's just tired of being the one I lean on. Who knows what's going to happen next? I mean, sure, this won't kill me, but what if I have to have surgery? And what if the surgery goes wrong? What if I don't make it.Well, you know, that might be easier on him, anyway. Then he wouldn't have to put up with dealing with a sick woman who projects her fear and anger into other places...." and on and on and on it goes. And as that stream continues, I just get more and more agitated and sad, until next thing you know, I'm lying there shaking, pissed, sad and crying, and feeling even worse because, of course, everyone is asleep, so I'm alone. Again.

So I do what I'm doing now. I get up. I get out of the bed, put on some clothes, come into the living room and sit down at my computer. And I desperately wish that someone would come to me, hold me, tell me it's okay. But they don't. So I sleep in my chair. Alone.

Good lord, I'm depressing. And I swear, it feels like all I ever blog is sad and negative and depressing. But really, I'm not compelled to blog when I'm feeling good, when my mood is happy. It's only when I'm alone in the dark that I'm compelled to come here and compose my prose.

Then, after I hit "publish," I feel guilty. Really, I'm not trying to garner sympathy. As a matter of fact, I freaking HATE sympathy. Seriously, I do. I would kill for a minute amount of compassion from those closest to me right now, but I don't want sympathy. I don't want pity. I want understanding. And support. And empathy (which is a different animal altogether from sympathy, by the way).

And I know - Jeff is going to tell me how much he cares, and Marikay will too, because they've been in similar spots, and they understand being in the dark. And others of you will tell me that you care and you love me and all the other nice things you say. And I'll read those words, and I'll cry. And then the guilt will come back, because that's not why I wrote this.

Really, I'm writing this so I can sleep. So that I can get the ugly thoughts out of my brain so that I can close my eyes and just see darkness, not black. I'm writing to purge these feelings from myself for a little while, to put them into a penseive so that they will leave me alone for a bit. Tomorrow things will likely be better. Well, except that Hans will still be upset with me, and that little tiff will not have been resolved. But he'll pretend like nothing ever happened, and I'll bottle it up until I can't hold any more again....

Loneliness and Cancer

Right now, I feel utterly and completely alone. And I know - I will get comments and messages telling me I'm not, that you're all thinking of me and so on and so forth. And I appreciate it, really, I do, but it's just not the same.

See, first time around, I had a couple of pretty close (emotionally and geographically - we were all neighbors!!) friends. It was wonderful, because when I needed to talk, needed help, or just needed a hug, I had someone I could go to right there that would give whatever the support I needed at the moment was. It really got me through the darkest moments.

This time, though, there really aren't many people around that I'm close enough to. I have Hans, and his parents, but they're dealing with things on their own level, in their own way. I think it's too much for them to deal with my emotions, too.

So I'm alone. My stucco isn't just cracked, it's flaking off, and I'm sitting here alone in the dark, trying to glue it back on. I swear, I've cried so much today, I have a ridiculous headache. I'm so keyed up and stressed and upset, I can't sleep, no matter how hard I try.

And it's just so weird. I can't even explain how I really feel. I mean, the first time around was scary - cancer was the big unknown  - but I got through. This time, though, it's worse. It's back, and it's not responded to the radiation. That's terrifying. I don't know what that means for me. The doctor couldn't really tell me what that means for me. All I know is that there is cancer growing inside me and there isn't a damned thing I can do about it. That scares me, and it pisses me off, and it makes me more than a little crazy.

And I don't have anyone I can sit and cry to about this, so I'm crying to my computer. To the friends in my little red box. Wishing that someone could reach through the screen and give me a hug, and tell me that it's okay to be scared and angry and sad and crazy.

Little Things

It's the little things in life that really make up the big happiness - finding a gorgeous glitter nail polish, having your husband bring home pizza and daiquiris for dinner, a space heater just for me, a cat curling up on my chest because she's cold.

Sometimes we get so mired down in the negative, in the bad, that we can't see the good. So every once in a while, we have to stop and look at what we have instead of what we don't. What's right instead of what's wrong.

Too Legit To Quit

Thanks to my sister, I came across a great blog today with a great post about Facebook and "slacktivism."

I read it, and I cried a little. The words were so eloquent, so true, so poignant. They said something I've been trying to express for months now, if not longer. Your games, your silly "secret" statuses about bra sizes and holidays/vacations, your, "if you care about [insert cause of your choice here], you'll repost this," statuses, they're useless! Beyond that, they're insulting, they're counterproductive and the insinuations make the people who post them seem rather ignorant.

I know that this isn't what people want to hear. They want to hear that survivors love those posts, that they make us feel warm and fuzzy inside. I may not be able to speak for all cancer patients, but I can speak for myself, and I can say that I have spoken to others who feel the same way - it pisses us off. You want to show support? Send me an email or a personal message telling me you're thinking of me. You want to raise awareness? Post a link to one of the websites that explains how to screen and be screened for different cancers.

I know - it's easier to cut and paste a status that pops up in your newsfeed. But really, what good comes of taking the easy - the lazy - way out? And what does that say to the people that you're supposedly doing this "in honor" of? I'll tell you what it tells me - that you care more about how you look like you're supporting all these worthy "causes" than actually supporting any causes. And your appearances really don't help anyone but you.

Seriously, please, I beg of you - stop re-posting these ridiculous statuses. No, I won't delete you from my friends list for repeatedly committing such a hurtful (and it is. It really is.) transgression. But I will realize that, while I'm closer to cancer than I hope you will ever have to be, I probably won't be turning to you for support.

Sitting On My Hands

I've been quiet. Truth of the matter is, the news at the last appointment wasn't ideal, and I just wanted to get through the holidays and try to enjoy them, and my family. So I did.

But now, the holidays are over, and it's time to get back to my "real life," if you will. The kids are back in school, and I'm slowly, but surely, putting the house back together. Christmas is being packed away and organization of the house is occurring.

So yeah, back to that appointment.... Well, cancer's still there. Great big blob shows up on the scan, but there's no mass showing up on the ultrasound, which means that there's nothing to cut out. The good news is that I don't have to go through surgery right now. The bad news is I have to wait until April/May at the earliest before I can go back in for another scan and/or round of radiation. Of course, right now the doc is kind of wanting to avoid radiation if we can - I've had two moderately high (150miCu) doses, and if there's a chance they'll do the big, scary surgery, we need to avoid more rads beforehand, as each time they dose me, it makes recovery that much harder and slower.

So I get to sit. And wait. And think. For months. Having cancer sucks. Having to go through treatment sucks. But knowing that it's there, that it's growing, that it will not leave me the hell alone is slow torture. I'm a do-er, so doing nothing is awful. It makes me feel helpless.

And I know what most people say - maybe there will be a "miracle." (Well, I don't believe in miracles, and haven't in quite some time, if ever.) Maybe it will go away on its own. Maybe, if I just think positively, it will all be okay. And you know what? I think that, for the most part, I do a pretty damned good job of being positive. Of being strong. Of not burdening anyone around me with my fears and my pain and my grief. But guess what? This is scary. And ugly. And it sucks! And sometimes I need to be able to feel - and show - those emotions!

But, for now, I will sit on my hands, with my stucco slowly cracking, until we can actually do something about this beast in my neck. And hope that it doesn't get a sudden growth spurt and go on a Napoleonic invasion spree.

Catharsis

Catharsis is defined as "an emotional release; a cleansing." Some days, some hours, some minutes, I feel an overwhelming need for catharsis.

Today, for instance. I'm running around, getting things done, being productive. Then, I look out the window, and see all the friends and family of our neighbor gathered together to mourn and celebrate his life, and I just feel the desire to cry. Not for him, though, as one might think, but for me.

I put on this face every day, put it out there for the world to see. I smile, laugh, joke. Don't get me wrong - I'm happy, I am. And I don't spend every moment worrying or in fear. I do worry, though I do have fears. In the quiet moments, the ones where it's just me and my thoughts, the fear can be overwhelming.

Overwhelming fear, in me, always leads to one of two things: a search for information or paralyzation. Most days, I force the former instead of the latter because, really, what good does it do me to let my worries paralyze me. There's a downside to that resolve, though.

The more information I acquire, the more I seek. The more I seek, the more I know. The more I know, the more I have to worry about. It's a vicious cycle, one that leads to sitting alone crying. Because I can't talk to anyone about this. I can't let anyone know what it's like inside my head. So I hide. I stay home, I sit alone at my computer, reading more, worrying more.

Eventually, though, I do reach a temporary catharsis. I have a big blow up, get it all out, and then start over again. It feels better in that short time that it lasts. It gives me the bolstering I need to plaster my smile back on, to make more jokes about everything, to keep going.

Today is a researching and worrying day. Next week I go to the doctor, so until then, I'll probably drive myself crazy with worry. Then I can move forward.

Feeling Fraudulent

Since finding out that my cancer has returned, I have been asked repeatedly, "How are you feeling?" Every time someone asks, though, I feel like some sort of cancer fraud. It's not a good feeling, but I don't know how else to explain it.

With other cancers, treatment is usually a long, drawn out process, and it makes the patient look and feel pretty damned bad. And my radiation made me feel pretty shitty, too. But it was a one shot thing - one dose, stay in the hospital 24-48 hours, feel like crap for a couple of weeks. The first time around, I was also dealing with recovering from surgery and the undiagnosed (at the time) autoimmune issues. This time, though, after the radiation I was able to get back on my thyroid meds, and it knocked my other autoimmunes into remission. Because of this, right now, I feel better than I've felt in 5 years. Physically, I feel fantastic! I have energy, pain levels are low, things are great.

So when someone asks how I'm feeling and I say "Pretty good," or whatever version of such pops out of my mouth, I feel like a heel. Here this person is, expecting to see someone who looks sick, and I don't. They are expecting to hear some form of, "getting better," "today's a good day," or some such that you would expect to hear from a sick person. So when I'm asked, I feel like, in some twisted way, I'm letting the other person down.

Of course, no one really wants to know how you're feeling. They don't want to hear that, while you look fine, the thought of what's to come is scaring you to death. They don't want to know that you're furious with your body for continuing to betray you. They don't want to hear that you would like to punch The Universe in the nose for making you deal with this crap again. Really, all they truly want to hear is, "Doing good, thanks for asking!" They want to see something. 

So to everyone who asks, I'm actually physically fine. Emotionally is another story, but I won't bore you with that, because to someone not in this skin, it sounds like a lot of borrowed worries. It's not, I assure you, but still, that's what it sounds like. Talk to me if (when) I have surgery, though.... After that, things will be different.

Pet Peeve

I have a pet peeve that was just piqued by the CMAs. It's something that has bothered me since that first round of quarantine, when I chose what I thought was a complement of fun, light-hearted movies to take in with me - stop making everything about women having cancer. Seriously. Stop.

You see, after being told I had cancer, then having my throat sliced open, then being fed radioactive pills and left alone in a hotel room for two weeks with no human contact, I decided to watch "The Family Stone." It was supposed to be a comedy. It was supposed to be light. How the hell was I supposed to know that the mom had cancer and (SPOILER WARNING) died at the end?? Because, honestly, if I had had any clue, I would NOT have taken that movie with me. That's the last thing I needed right then!!

Now watching the CMAs, and Martina McBride is singing another one of those depressing, emotionally charged, "mom with cancer" songs. Really, again, bad timing, and something I hate having sprung on me. I hate being depressed. It's not an uplifting song. It's not a "beat it" song. Yeah, sure, it's about her husband loving her, but it's about her now hating herself. I get it. But it's irritating. I don't want to hear, "cancer ruins part of your life, but your husband will put up with you anyway." I want to hear, "everything's going to be fine, life will eventually get back to normal, scars heal...."

So yeah, nothing that anyone can change, and selfish, I know, but that's my pet peeve. I've cried enough about my cancer for now. I don't want to be relaxing and have something that makes me cry about it (and think about it even more).

Fears

Well, I scheduled my follow up scan today. I was supposed to do it the couple of days after I got out of the hospital, but I didn't. I wanted to, I knew I needed to, but I just didn't. At first, I couldn't figure out why. Then it came to me - every time I thought about it, I was filled with such dread. The very idea of even calling was just miserable.

I knew it was irrational. What is there to fear? I already have cancer - again - so what's the worst that this scan could show me? I analyzed my feelings all of last week. I just didn't understand what my problem was. Finally, though, yesterday, as I had a lightbulb moment about something else, it clicked - Fear isn't rational!

Think about it - I was unwilling - unable, even - to call and schedule this appointment out of fear. I was afraid that I would go in, they would scan me, and we would see that the treatment hadn't worked at all. Completely irrational - this scan won't tell us whether the treatment "worked" or not, it's more of a baseline scan. I was afraid, after that first couple of days out of the hospital, that someone would yell at me for not calling and scheduling sooner. Also completely irrational - while the team is great and nice and friendly, they don't really care when I call to schedule. They deal with this all the time, and as long as I schedule within the window, all is well with the world.

So I bit the bullet. After a relaxing weekend, then a rough night last night (again with the fear and anxiety - it's a real bitch, I tell ya!), I hardened my resolve. I decided I was going to call and schedule. THis morning rolls around, and i busy mysef doing all sorts of other things. I read the paper. I get my warranty stuff set up to get my camera fixed. I think about all the other things I need to be doing.... Finally, though, I called. You know what? No one yelled at me. No one was perturbed. Patti just wanted to know how I was feeling.

Scan is scheduled for next week. I went ahead and scheduled lunch with Hans for afterwards, too, because, well, I'll be across the street, and it's a nice thing to do.

Now on to the next source of fear and anxiety... I just have to identify it!

Motivation

Motivation is a funny thing. It's complex, even at the best of times, for me, but when dealing with my various health issues, some days it becomes more complex. Like right now. I have the desire to do ALL THE THINGS, but I have to find the energy.  So I'm going to drink this third cup of coffee, then go crazy, doing as much as possible in the shaky, anxiety ridden burst that it gives. Then I'll sit down for a few, force myself to eat something, drink a Five Hour Energy, then go off like a shot again. Lather, rinse, repeat.

Even still, I won't accomplish as much as I want to - I never do. Granted, this is partially because I set goals beyond what can rationally be accomplished. Of course, it's also partially because I have two tween girls, which means I spend most of my time and energy cleaning up after them or breaking up their fights.

Still, I will go through this routine every day until I'm a normal person again. The good news is, I do get some things done. The bad news is it makes me cranky and exhausted. It uses up more energy doing things this way, energy that maybe I should be spending on time with my family, instead of time for my family. But I have these ideas in my head that I can't fight.

Ideas like, "People judge me based on how my house looks. People judge my based on how my children look. People judge me based on how I dress/what my nails look like/what my outfit looks like." Maybe they don't. But then again, maybe they do. I spent my entire school career, up until college, being judge based on these things, fighting these judgments and trying not to care what others thought of me. Now that things are (slightly) more in my control, I fight it further. My house isn't just so? You're not coming past the front door. My nails are a mess? I'm not leaving the house till they're better.

And how did I get from motivation to judgment in one blog? Because, for me, they're tied together. The lower my motivation, the more I assume I'm being judged, the lower my daily self esteem. The lower my daily self esteem, the greater the anxiety and depression of that particular day. Beyond that, there's the fact that this is all tied to my health - the healthier I am, the better I feel, the more motivated I am and the more I accomplish.

Everything in life is tied together. Some days it's tied together in pretty little bows. Other days, it's all knotted up like yarn that has been used by a three year old as a cat toy.

"Insecurity" is a a four letter word

One of the side effects of any chronic or serious illness - one they don't bother to warn you about - is the guilt and insecurity that comes along with it. The feelings of worthlessness and helplessness that come from fighting with your body and your mind when both are actively working against you.


The guilt and insecurity are the beasts, the monsters of the disease. They do more to harm your heart and soul than the diseases can ever do to the body. They wear you down and make you see things that aren't there, while hiding the things that are.


If you aren't in "The Club," you may wonder what the heck I'm talking about. If you are, you may or may not recognize it for what it is. It's that monster in the closet that tells you that the people that you love couldn't possibly love you anymore because you're a burden. It's that slithering serpent that tells you that the ones you love deserve so much better than to be saddled with caring for you. It's the oozing monster that whispers into the darkness that tells you that they didn't sign up for this, and are probably out trying to find something less trying.


It's that little voice in your head that says you're not worthy and blows every little thing into a huge to-do. Intellectually, you know it's not true, but emotionally it tears you into tiny little pieces. You push yourself to exhaustion, trying to pretend that everything's okay. Or, if you're not pushing yourself, you're pushing everyone else away. 


It's also that part of you that fears telling anyone anything. You don't want to seem like you're seeking attention, after all. But at the same time, all you want is someone to give you a hug, to tell you it's okay to be scared and angry and sad. But you don't. You hold it all in, you sit and stew and it builds up inside you, eating at you just like the cancer that has caused all the feelings and emotions.


It's lonely, walking that fine line between needing support and wanting to not be a burden. Between needing someone to hold your hand, and having to put on a brave face for everyone else. 


It's lonely.