Wednesday, May 15, 2013

Stream of consciousness

Please forgive me if this turns into a rambling mess with more twists than a mountain trail...

I want to write. I have words that beg to come out of me, mostly at night, as I'm trying to sleep.

I've attempted writing over the past months. But, I get a couple of sentences typed out, then re-read them and realize they make no sense whatsoever. So I try again, with the same results. Over, and over, and over, until I grow so frustrated I could scream. And sometimes, I do scream.

It's not that I don't know what to say or how to say it; in my head, at night, alone in the dark, I can compose coherent, cohesive, cognizant prose. But now, when I try to make those words flow from my head to my fingertips, there's a disconnect. Suddenly, I forget everything.

Lately, I'm even forgetting how to spell. And I don't mean I'm mispelling words that are comple or complicated. I mean I'm misspelling things I should not misspell. Words the composition of which should be as effortless to me as breathing.

I'm forgetting a lot of things these days. I have to write things in multiple locations now to remember them. I spend my day in fear that I have forgotten something I've scheduled, so I check my wall calendar, my day planner, my online calendar, and the fridge (for sticky notes). I go places and forget why I've gone there. Even with my grocery list, I'll forget the whole reason I went to the grocery. I'll be mid sentence and forget what I'm saying. I can't remember any of the doctor's or medications' names when I'm asked. I completely go blank. I go to look something up, and by the time I've opened the new tab to do the search, I've forgotten. It's bad. I use the wrong words, or can't think of words.

This post, for instance. I started this post at 8 this morning. It is now 9PM. And I'm wrapping it up. I don't know that I've done anything more than whine about pain and frustration, but at least I think I feel a little emotionally better.

Thursday, March 07, 2013

Pseudotumor Cerebri

So, it occurs to me that I have mentioned my latest diagnosis, but I haven't really told anyone much about it. I haven't explained what it is, how it was diagnosed or what it means long term. Maybe I should do that now. Maybe I should start from the very beginning... .

Okay, so since last spring, my migraines had been increasing in severity and frequency. I was also beginning to experience some memory issues, but nothing huge. At that time, we were dealing with finding out that the last treatment for the thyroid cancer hadn't worked, and that there was still a tumor in my thyroid bed, trying to get the appointments at MDA set up, and getting our ducks in a row in the event that I would need more surgery. It was natural to just chalk it all up to stress, you know?

But by the end of the summer, when things had slowed down, we noticed that the memory issues had not resolved with the decrease in stress but were, in fact, getting worse. I started telling my doctors - rheumatologist, GP - I even made an appointment and started seeing a psychiatrist because I thought it might all be due to being depressed. And there was some depression and anxiety, but not really....

So anyway, I have thislist of symptoms that I'm taking to all my doctors. I kept the list with my medical info, and handed it to whichever resident I saw at each appointment, and then to the attendings when they would come in. Same list each time. Literally.

  • Tremors
  • Memory Loss
  • Cognitive decline (trouble spelling, doing simple math, forgetting or "losing" words)
  • Eyelid twitching
  • floaters in field of vision
  • increasing migraines that don't respond to meds
  • branch patterned goosebumps on right arm
  • exhaustion
  • muscle cramps, especially in hands
  • peripheral vision decline
  • mood changes/depression/anxiety
  • nipple discharge (sorry, guys!)
  • no libido
Each time, I handed them this piece of paper with this list on it. Each time, they would pay attention to one, maybe two, items on the list, and dismiss the rest, then either tell me I'm stressed, depressed or just tired. It was so far beyond frustrating. Finally, I got my rheumatologist to refer me to neuro. Her only reasoning? Increasing migraines. Fine. Whatever. I got my referral nonetheless.

In the meantime, though, I got this headache.

At the beginning of September, I noticed that, instead of having migraines almost every day, I was having a near constant migraine. By our anniversary (9/16), it was constant. And debilitating. As in, I was doing nothing but laying in bed, crying, because it was honestly the worst pain I had ever been in. It got so bad that I was debating whether to call my GP or go to the hospital. The only reason I chose the GP was because the thought of waiting in an ER in the kind of pain I was in was just unfathomable. Bright lights? Lots of noise? No, no thank you. 

So anyway, I go to the GP. Get a doc that says, "meh, migraine, here, let's give you these migraine meds to try." I go, get the rx filled, take it in the store (because I was honestly in that much pain - I wasn't driving, Hans was, which is rare, too). Nothing. No relief. Call back the next morning, get told by the MA that was taking the call that no one was going to write me an RX for narcotics (bear in mind, I never asked for narcotics. I'd already tried the fioricet I had been given, and some other painkillers that I have been prescribed, and when none of them worked, I didn't bothering taking additional doses of them because it was pointless), and I should go to the ER. As nicely as I could, I asked to please speak to either the attending or one of the residents, as I had been told when I was in the day before, to call if the headache had not improved, and it hadn't. This time, I got a very caring resident who, once I made it clear that I wasn't, in fact, drug seeking, asked me to come back the next day to see her. With her, we tried a couple more migraine meds, hoping that maybe we just hadn't found the right combo. She also ordered a head CT, that I went and had done that very day (because no one wants to put off a head CT when there's clearly an issue). Of course, it came back clear. Still, the headache persisted. Not headaches. Headache.Singular. This was the middle of October, and I had had this headache nonstop since the middle of September. I went to bed at night with a throbbing head. I woke up in the morning with throbbing head. The only thing that seemed to be bringing a modicum of relief was a combo of toradol or diclofenac and compazine, along with just hiding in bed as much as possible. It was no way to live.

Finally, it was time to see the neurologist. Again, I handed over my list. Again, I explained my concerns. Again, I detailed all the steps we had taken to that point to remedy the situation. Again, it fell on deaf ears. It was suggested that I go see a colleague of hers - a headache specialist - for botox injections. Because that's a normal treatment for chronic migraine, and, after all, at 34, I could use some wrinkle work (her words. I just simple dogged at that one). I asked if there was anything else she could recommend in the meantime, as I wasn't terribly excited by the thought of taking these heavy duty meds just to control symptoms for a few hours - and let's be clear here: the headache was not going away, it was simply being lessened to a point that I could almost function. To appease me, she ordered an MRI. Again, I went down and got it scheduled for ASAP (I think I had to wait a day - the imaging center at Ochsner Kenner really is fantastic!). A few days after ( a Friday at 5:30, to be specific), I got a call from the GP, who had been the one that my MRI results were sent to, for some unknown bit of kismet.
 "Has anyone called you with your MRI results yet?" she asked.
"No. Not yet."
"Oh, well I have them here. Do you have some paper and something to write with?"
I grabbed paper and pen, and began writing what she was telling me.

"Pseudotumor cerebri. Your MRI report suggests pseudotumor cerebri. Have you ever heard of this condition before?" At first I thought I hadn't. So, she began telling me about it, calming me, because hearing the word "tumor," even when, intellectually, you know that pseudo means not, it's hard to squelch that fear that creeps into your belly. I wrote down as much as I could, then promised to call her office on Monday to make an appointment to talk to her about this face to face and figure out next steps.

to be continued....

Monday, March 04, 2013

Reading through the fog

Last week's appointment with the substitute neurologist was frustrating, at best. I spent 45 minutes with two first year med students, who knew less about my condition than I did, and that's saying something, since I haven't dedicated as much time and effort to researching pseudotumor cerebri/intracranial hypertension as I have to other conditions (hey! I've only known this even was a thing since November!). Then, when the neuro finally decided to come in, she was dismissive, spent little to no time talking to me, and when I asked her about cognitive function issues, she said, "That's not the pseudotumor. You're depressed. You need to see a psychiatrist. That's the only explanation for memory and concentration problems."

Now, I realize that A) most patients probably don't understand the difference between cognitive function and concentration issues and that B) she didn't have much information from me about the cognitive function I was concerned about (you know, because she didn't bother to talk to me), but to be so presumptive and dismissive of a patient - any patient - is just bad medicine.

That appointment ended with her telling me to come back in two months, when my regular neuro will (should?) be back from maternity leave, and that we're not going to do anything any differently than we've been doing. Forget the cognitive issues. Forget the increase in vision loss. Forget the fact that the blinding head pain is not fully controlled with the medication. Just come back in two months when she doesn't have to deal with me.

Then, I go to the front desk to make my appointment. Now, keep in mind, this was on February 25th. I was told two months. The neuro returns on May 1. I have an uncontrolled neurological condition that, without treatment, has permanent ramifications. The soonest they can get me back in?? June 10. 104 days. Over three months. Now, is it just me, or does that sound like a bit longer than what I was told?

So, since I seem to have time, I am doing research. I remembered someone mentioning on a message board I belong to a different form of aphasia, one that manifests as using the wrong words for things, having trouble remembering specific words, or struggling to get a word out. Ironically, I couldn't remember what that word was, so I put out a message to that group asking if anyone else remembered, and, of course, someone did - Anomia, or anomic aphasia. I started reading about it last night, and it fits. It's a subtle aphasia, one that isn't always terribly noticeable to casual acquaintances, moreso to people you spend the majority of your time with. My kids and husband notice it most with me, but my daughters' troop leaders have both noticed instances, as have some other friends. And, of course, I notice. I notice all the time. It drives me insane, because words are my armor. They're my weapons, my tools, my comfort. Losing them, not having them at my command at any given moment, it's pure torture. And then there's the memory. I forget things so frequently, so quickly. But, again, it's subtle. I pass the quickie "do you have Alzheimer's" test that the residents give with flying colors. But ask me what medications I'm on? My kids' birthdays? I have to think a lot longer than I should. And there's the short term memory issues (yeah, I had to try three times to phrase that because I couldn't remember "short term memory.") - leaving the stove on, forgetting that I'm cooking something, forgetting that I just told someone I'd do something, forgetting that I just asked someone something. Hell, last weekend, I went to get pizza, literally a mile and a half away. Less than five minutes drive time. When I left the pizza place, I opened the sunroof. By the time I got home, I had forgotten that I had opened the sun roof. It stayed open all night. While it stormed.

So anyway, I'm doing research, and I'm finding text in Cognitive Neurology: A Clinical Textbook by Stefano F. Cappa, Jubin Abutalebi and Jean-Francois Demonet that talks specifically about intracranial hypertension causing anomic aphasia. Which means that while, technically, it's all in my head, it's not my imagination. Now, though, I have to decide whether to just keep chronicling what's going on and wait for my appointment, or if I try to find a new neurologist who can see me in a timely manner and possibly get these symptoms under control. On the one hand, I feel like the original neuro was/is good, knows her stuff, and is able to help me get things under control. However, her office is making me wait more than three months. At the same time, a different neuro may be able to get me in sooner, but may not have the access to research that a teaching hospital does, and may not have the experience with this condition that she does.

I hate not knowing what to do. I hate always needing to know what to do. I hate being sick. 

Monday, February 25, 2013

Things of great importance....

So today is another appointment with another neurologist. The neuro that started treating me for Intracranial Hypertension (AKA Big Brain Syndrome) is on maternity leave, and has passed me on to one of her colleagues until she returns in May. At first, I was a bit irritated that this new doctor, instead of seeing me as an existing patient and just following what the other neuro laid out, insisted on seeing me as a new patient and getting her own feel for my situation. Now, though, since things have not resolved in the manner we originally had hoped, I'm thankful for this opportunity at fresh thoughts. So later today, I'll drive through this crappy weather to the Garden District to be poked, prodded and questioned, and hopefully have some questions answered....

But that's not what's of greatest import here. Not even remotely.

No, today, I'm taking a departure from talking about me (kind of) to talk about something else - domestic abuse. You see, last week, someone posted a graphic that pointed out that the relationship between Bella and Edward in Twilight hits all 15 of the National Domestic Hotline's criteria for abuse. At first, we were all "Duh!" But then, in the course of conversation on Facebook, we talked about how many people may not realize this, and how many people are abused on a daily basis. Someone suggested bingo cards. I went a step further and created the cards - 6 in all - so that I can use them. I figure, hey, I have daughters, they're going to read stuff like this. Instead of attempting to ban books with stories like Twilight's, it would be a much better idea to not only allow them to read/watch them, but to also learn from them.

So many people end up in relationships that they don't even see as being an issue until they're near powerless; I know, I've been there myself. If I can teach my girls,or anyone else, before they make the mistakes I did, then I've succeeded.

So please, I share these bingo cards with anyone and everyone. I ask that you share them. I ask that you use them. I don't want credit, I don't want anything but to help someone else.

Ghandi said, "Be the change you wish to see in the world." This is my small contribution to that.

Thank you!

Domestic Abuse Bingo Cards


Sunday, December 09, 2012

I didn't ask for this.

I didn't ask for this. I didn't ask to have a body that is continually betraying me, broken and useless. I didn't ask to be in pain more often than not. I realize that no one else asked to have to deal with my illnesses, but it's important to remember that neither did I.  As much as my limitations, my pain, my inability to just suck it up and cope annoys others, the pain is mine, and mine alone.

I don't ask for much. A little patience, a little understanding, and, very rarely, a little help. The last few months have been a practice in torture. I can't even put into words what it's been like in this broken, betraying body. It's a hell I've never known, the worst I've dealt with to date, and that's saying something. And yet, outwardly, it seems to some that I'm just cranky and lazy. Even when the pain has been at its lowest, it's still be among the worst I've experienced. On the backburner, it's like a migraine; when in all its glory, I wish for a guillotine, anything to make it stop. And the ringing. The ringing in my ears. I try to drown it out with outside sound, but then that makes the headache worse. The ringing alone, though, amplifies the headache while also making me feel like I'm losing my mind.

I apologize if I'm forgetting things, if I'm not accomplishing things, if I'm not being who you think I should be. Regardless of what anyone thinks, I'm doing my dead-level best to function at a manageable level. I am coping the only way I know how. And, for the most part, I'm doing it alone.

Tuesday, October 09, 2012

Twitchy... .

I should be in bed, trying to sleep. I have to get up in a few short hours and deal with all the angst that comes with a pre-teen girl trying to get ready for school before she's had her meds. But I'm twitchy, so I'm sitting in my chair, at my computer, trying to get things out of my brain, and waiting for my nightly meds to start working their magic... .


There's a number of reasons I may be twitchy: It could be hormones. It could be that yesterday was my birthday, and so today is the let down of not being the princess anymore. It could be that all the "Pinktober" crap has started, and that makes me cranky every year. It could be that I have had a migraine for more than two weeks with only one day of relief. It could be that I'm tired of dealing with rude people in professional situations. Like I said, it could be any number of things. Alternately, it could just be inexplicable anxiety and crankiness. Lord knows that's not an impossibility with me!

For now, though, I'm going to rant for a minute. I'm going to rant here and try to not respond on everyone's Facebook statuses when they post about it and inadvertently piss me off. I'm going to rant about something that I've ranted about every October for a few years now: Pinktober and Pinkwashing.

Here's the thing - I know too many other survivors and fighters. And I've had to say goodbye to far too many incredibly strong people. Of the friends that I have that are cancer patients, survivors or family members, I can think of maybe one who isn't offended by the salacious act of "pinkwashing." And, honestly, I haven't talked to her about it in over a year, a time when she was newly diagnosed, a time when many patients just grasp at whatever they can find to not feel so alone.

Just a few facts about cancer:


  • Lung cancer killed twice as many women last year as breast cancer.
  • More than 400 men died of breast cancer last year.
  • It is projected that more than 20 thousand people will die of bile duct cancer this year.
  • More than 28 thousand men will die of prostate cancer.
  • Nearly 2000 people will die of thyroid cancer this year, over half of them with the same diagnosis as mine.
  • "An estimated 56,460 new cases of thyroid cancer are expected to be diagnosed in 2012 in the US, with 3 in 4 cases occurring in women. The incidence rate of thyroid cancer has been increasing sharply since the mid-1990s, and it is the fastestincreasing cancer in both men and women. Since 2004, incidence rates have been increasing by 5.5% per year in men and 6.6% per year in women."
So, let's talk about awareness now.

Here's the thing - what I just posted, the links, the facts, the figures, that's what raises awareness. Awareness means teaching. It means making people aware. Women are aware that we have breasts. And we're well aware that these breasts can develop cancer. I honestly don't know of a single female in an industrialized country who has not heard of breast cancer. We are aware. What people are not aware of, however, is that men get breast cancer. And that men should be performing self checks. So, if you want to raise breast cancer awareness, maybe that's a good place to start. Another area where breast cancer lacks awareness is what treatments entail. People not close to the situation have this idea that it's cut out a lump, or cut off a boob, or, in extreme cases, cut off both boobs, maybe have some radiation, maybe have some chemo, then life goes on. The reality, though, is so much more involved and drawn out for most patients. And just like other cancers, the situation varies from patient to patient. What worked for your friend/sister/hairdresser/dogwalker's uncle's girlfriend's best friend's nail girl may not work for you.

There's a saying in the Special Ed community, "If you've seen one person with Autism, you've seen one person with Autism." Cancer is very much the same way. My thyroid cancer has been different from any case of thyroid cancer any of my doctors have treated. My friend who died of brain cancer had a similar experience, in that her case was different than others. Every cancer patient I know, every cancer patient I have ever talked to, has said the same thing - while we may have things in common, and certainly have an understanding of one another others don't, none of us have had the same experience. We all come to this club from different places. We all take different things from being members of the Cancer Club. We are unique, and so are our experiences.

You want to raise awareness? Understand that. Understand that cancer doesn't discriminate. It doesn't care if you're rich, poor, black, white, fat, thin, vegan or carnivore. It doesn't care who you know or what you do. And while some cancers seem to be more acceptable, to the patients, they're not.

Think of it this way: Replace Breast Cancer with Colon Cancer. Do you think we'd get a month dedicated to selling brown products? Would football teams deck out in poop brown gear? Would people decorate their cars with brown ribbons? How about prostate cancer? Thyroid cancer? Bile duct cancer? Urinary? Bladder? Penile?? Testicular??? No. So why parade breast cancer patients and survivors just so you can feel better about yourself? Why contribute to corporations getting even richer off of the suffering, pain and fear of patients and survivors? Why trivialize what dealing with a cancer diagnosis does to a person by commercializing their experience?

Think about it. Think about the men and women behind the diseases. Think before you pink.



Sunday, September 23, 2012

Words

My words are all jumbled up in my head tonight, so please forgive me if this becomes a bit rambly and incoherent.

Today was an odd day of sorts. I got (what should have been) plenty of sleep last night, I didn't have to get up early, I didn't have a physically taxing morning. I drank an entire pot of coffee and two glasses of Diet Coke. By all rights, I should have been bouncing off the walls; indeed, I had intended to be bouncing off the walls, doing yardwork, cleaning, generally being busy. It was going to be wonderful!

But, as has been the case lately, by shortly after noon, I was so tired, my vision was literally going double. I tried to stay awake, I did. I ate my lunch, but only a small one, with plenty of protein. I had my Diet Coke. And yet, I couldn't do it.

"I'll just lie down for 30 minutes, that should be enough, then I'll get up and clean the kitchen from last night, and do the laundry and plant some flowers! 30 minutes will only put me to about 3, so it will be wonderful!"

Only 30 minutes became more than two and a half hours. I even set my alarm. You know the type - the one on the cell phone that, should you miss it, for whatever reason, continues to go off every 10 minutes or so? Yeah, I have no idea how many times I hit snooze, or how many times I just didn't hear it. All I know is that I laid down sometime around 2:30, and when I finally made myself get up again, it was after 5.

The worst part though, is that this isn't just today. As a matter of fact, yesterday was a bit out of the recent norm because I didn't take a nap. I wanted to, but I was able to force myself not to go back to bed. Granted, I didn't actually do a whole lot, but still - it was a small victory.

Now, I know, some people are probably thinking, "What the hell are you complaining about? I'd kill to take a nap every day!" And yeah, that's all well and good, except, as Hans can attest to, I'm just not a napper. I'm not. I've always had a very strict, "lie down for an hour, no naps after 4PM" rule and, in the past, when I have napped, even following those rules, I've still had trouble sleeping at night. Not anymore. Seriously, as I type this, I'm so tired again, that I'm having a hard time focusing. I'm waiting to go to bed because I keep clinging to the hope that normalizing a bedtime schedule will fix everything. 

And that's the thing: I keep trying to find something to blame. First, it was that the stress of the MD Anderson trip. Then it was the stress of knowing the cancer's sitting there and we just have to wait for it to grow before we can actually do anything about it. Then it was the kids being back home. Then it was school starting. In reality, though, this has been going on for months, and I don't have an actual reason for it. Everything that we thought, everything that the doctors considered, we've treated or tested for. Now we're grasping at straws.

And it's not just the sleeping. I mentioned it before, but it bears repeating, because it's a really big deal: my memory has become utter shite. We're not talking the normal stuff, either. We're talking forgetting what I've said to someone a few moments earlier, forgetting people's names that I should remember (which has caused some really awkward moments), forgetting to turn the stove on or off, putting clothes in the washer, getting through entering the settings and loading the detergent, only to forget to turn the damned thing on, not being able to remember a single freaking thing on a grocery list that I've forgotten at home. I've even been forgetting the names of the medications I take, which is a huge, huge red flag.

Honestly, it's gotten to the point where I have to enter every single little thing into the note app on my phone. I have to enter appointments into my calendar immediately when I make them. I have to set alarms to water my flowers, to start dinner, to know when the kids are to get up and when they are to get home.

And then, when I forget something, I know I've forgotten it. Words - I lose words all the time now. This bibliophile can't remember the plots of books, or pull simple words from the air to get them to her mouth or fingers. And when I can't remember, I get agitated. I thought it was just me, that I was just frustrated, but that it wasn't noticeable. That is, until the rheumatology fellow I was talking to started telling me to calm down when I couldn't remember one of my medications to tell her. I wasn't saying anything, but evidently the look on my face conveyed my agitation.

It's scary. It's scary wondering what the heck is going on. It's scary knowing that there is something, but no one has put their finger on it. And it's scary being afraid that maybe it's just all in your head. Every time I go to the doctor, I'm terrified to even tell them about anything, because I'm afraid they're going to think I'm a hypochondriac. Hell, sometimes I'm afraid I am a hypochondriac. I've been assured that I am not, in fact, and that the things that are wrong with me are proven and quantifiable. But it's just so much. Even if I know, and even if my doctors know, that it's all real, who's to say that everyone outside believes it.

Maybe I can just go to sleep and forget my fears... . Silver linings?

Saturday, September 22, 2012

Rainbows In Little Boxes

I've not been around much lately; too little to report, too much to think. Of course, part of the problem, too, is that I've just gotten tired. Tired of explaining, tired of justifying, tired of talking. Tired of thinking, too, but I haven't figured out a reliable way of not doing that. Not for lack of trying, though, I swear.

Like tonight, for instance: Tonight was "pill minder night," that fun task of filling the tiny little compartments with each day's medications, and I realized I've come full circle - back to 11 pills a day. I had reached a point, mostly due to not having insurance, and therefore, not having the ability to get prescriptions filled, of not taking anything. Then, we slowly got back to the necessary meds - the thyroid hormone, the most basic of Fibromyalgia drugs. Now there are more, including antibiotics for the wacky skin crap the radiation caused and acid reducers for the damage to my esophagus, also likely radiation induced.

It's frustrating. It's frustrating to be 2 weeks away from 34, and to be taking more medication than most 80 year olds. It's frustrating to know that I have to take about half of them to survive, and the other half to essentially counteract the effects of the first half. And it's frustrating to know that this is likely my life.

I've said it before, but I'll say it again - I wish there were a way to compound all my daily meds into one pill - heck of a lot less to keep up with and remember, which is a big deal, since my memory seems to be failing at an alarming rate right now. So much so that I have brought it up to all of my doctors. So much so that Hans has taken notice. So much so that the kids have taken notice. So now, I have a referral to a neurologist, and an appointment for the end of October.

Ugh. Cancer. Such a stupid bitch. I was fine before they started treating it, and now I'm falling apart, held together by the rainbow in the little boxes that I swallow twice a day.

Sunday, June 03, 2012

What if, what if, what if???

I try so hard not to get sucked into the "what if" game. Sometimes, though, it's impossible not to. Sometimes, your brain just takes over and you have absolutely no control over where it goes. None.

Take this week, for instance. On Thursday night, I got sick. It's rare for me to be that spectacularly sick, because I hate vomiting with a burning passion, to the point that I will do ANYTHING to prevent it. But I couldn't. At first I chalked it up to something I ate, and went back to bed. However, all day Friday I still felt pretty crappy and couldn't eat anything. So what did I do? I started playing a little bit of "what if." "What if this is a new symptom? What if this means that the tumors are growing more (there - I finally used that stupid word!)? What if, what if, what if?

Then, yesterday, my stomach had calmed down a great deal, and I was able to eat and (mostly) enjoy the day. However, my chest hurt. Still does, actually. Nothing major, and probably muscle strain from Thursday night, but still... My brain is going insane. "What if it's a new symptom? What if it's the tumors growing? What if there's metastasis that they haven't seen because they only did the ultrasound of my neck? What if this means that it's not thyroid cancer anymore, but some other sort of cancer attacking me, and that's why they didn't find it before - because they were looking for horses in a field of cows?? What if, what if, what if?????"

It is driving me crazy. And, of course, I can't talk to anyone about it, because any time I've tried (with the exception of a rare couple of people), I've been given the whole, "Be positive!!" line. Which, of course, does nothing but piss me off, because, you see, I am positive! But I'm also scared and worried, and those are valid emotions!!

Which brings me to another point - I know you all love me, but please, stop invalidating my emotions, and the emotions of any other cancer (or any chronic illness) patient you come in contact with. I know that it isn't easy to deal with this, but think about how hard it is for the person going through it. And please, please, please, for the love of all that is good and holy, just take the words, "Be positive," "stay positive," or "think positive," out of your vocabulary. You mean well, but that - those little words - invalidate everything we're going through.

Now, if you'll excuse me, I'm going to go take a shower and some xanax, and make nice with the general public for a while.

Friday, June 01, 2012

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....


Wednesday, May 23, 2012

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....

Tuesday, May 22, 2012

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....

Friday, May 18, 2012

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!

Thursday, May 17, 2012

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.

Wednesday, May 16, 2012

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.

Tuesday, May 15, 2012

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!

Sunday, May 13, 2012

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....

Friday, May 11, 2012

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... .

Thursday, May 10, 2012

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....

Tuesday, May 08, 2012

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.

Monday, May 07, 2012

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!

Sunday, May 06, 2012

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....

Friday, May 04, 2012

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....

Wednesday, May 02, 2012

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....

Thursday, April 19, 2012

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.

Wednesday, April 18, 2012

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.