Harmoans

It's funny isn't it, how hormones can make or break a day, a person, a life. Back when I was completely off my thyroid, my universe was seriously out of whack, none of my planets aligned and it was doubtful if the sun would rise again.

I remember one day in particular, I was bereft. There's no other word for it, I was completely spent emotionally and physically, and the tipping point was probably something as inconsequential as a little spilled milk. My husband tried to offer his support, to give me a reassuring hug - even though I'm pretty sure I didn't deserve it. In fact, I pushed him away and asked him if he could take the kids somewhere and retreated to my room. I began tidying up, which is how I normally deal with stress and overwhelming feelings. Something about ridding my environment of clutter seems to purge my mind of emotional clutter as well.

I went through my clothes, throwing them in a stack on the closet floor, intent on throwing them away, but later deciding to donate them. I grabbed book after book off my shelf, briefly weighing their fate before replacing them on the shelf or therapeutically ripping page after page from its binding. As I ripped, the grief found its way out of me, trickling at first then building to a torrent of pent-up frustrations and ending in sheer exhaustion.

My point is that during that time it felt like the hopelessness and oppressive sadness would never leave me, that somehow it had become my new reality. I began to wonder at my sanity and whether I was capable of nurturing any relationships with my husband or children. I was hoping a hospital somewhere would take me, administer heavy sedatives, and lock me away.

During this time I reached out to a friend who reminded me that this was not permanent, rather it was most likely related to the lack of hormones in my system and the subsequent upheaval and chaos. In my mind, I knew she was right but part of me still doubted the possibility that life could ever regain some semblance of normalcy, or whether I could last long enough for that to occur. Pity parties are a lonely, lonely place.

It has been three months now and I can safely say that my friend was right. The light at the end of the tunnel is more than a promise, it's a reality.

Where I become hot, but not hawt

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Since my surgery, I had been unable to raise my voice. To call my children in for dinner, I'd step out on the deck, tuck my chin in an attempt to lower my voice further, and then ina booming deep voice call out their names and say, "Dinner!" My voice was beyond husky, it was straight up masculine.

I'd had my thyroid out on October 4th and by October 26th my TSH was measuring 57 (extremely high and doubling every week). This meant that I was sufficiently hypothyroid to undergo my wholebody Radioactive Iodine Scan. I had been told that I would still be able to breastfeed Ellie after the radioactivity had left my bloodstream (40 days). One of my friends had even offered to take Ellie and continue to nurse her for me so that she wouldn't have to bottle feed in the meantime (that is a true friend).

But when I double-checked this with my oncologist, she informed me that I would not be able to breastfeed Ellie anymore after taking even the small dose of Radioactive Iodine (RAI). My RAI scan dose was scheduled for November 4th, the scan and hospital admission for the larger RAI treatment dose for November 7th. She also mentioned that I could possibly increase my risks for breast cancer by still producing breast milk when I received the large dose and to start taking antihistamines (benadryl) to help dry up my breast milk.

Thinking back, I can't believe I went ahead with the treatment so soon after having Ellie. I was going to have to be away from her for 3 weeks in order to minimize exposure to her thyroid and she was barely two months old. Even more than not being able to nurse her, the separation from her tore at my heart.

On the morning of the 4th of November, I nursed Ellie for the last time. I looked down at her face, at her little fingers grasping my thumb, listening to her satisfied swallows and wondering how these next three weeks were going to be without her. I handed her to my mother and drove myself to the hospital to take my scan dose.

When I arrived, they wanted to know when my last menstrual cycle had been. I told them I had just had a baby and hadn't had one. They insisted on drawing blood for a pregnancy test, even though I told them there was no possible way I was pregnant. I reminded them that one has to have intercourse for that to occur and according to memory that hadn't happened since before her arrival. Because when you are a Franken-neck in terrible pain, drained from childbirth and the rigors of parenting and feeding a newborn baby, it is all you can do to collapse into bed at the end of the day, nevermind being more intimate than cuddling. But it didn't matter and of course, the test came back negative.

I was given a pill to take, a cup of water to swallow, and a page of precautions to follow. I went home and fell into bed. I went through the pain of abruptly stopping nursing. I had tried to gently phase out breastfeeding Ellie, but as soon as she took the bottle, I would have a hard time and nurse her again. To say I was ambivalent about my decision to go ahead with treatment is an understatement.

But go ahead with it - I did. When I arrived to take my dose, I was led up to the 6th floor of the hospital to a room tucked in the corner by the emergency stairs and an adjacent empty room. I hadn't eaten anything in case of nausea. It would be considered a nuclear cleanup if I "tossed my cookies." The radiologist informed me that there hadn't been enough RAI to put in pill form, so I would have to sip mine. It was like drinking flat alka seltzer - metallic and nauseating. I was given a does of Phenergan to combat the nausea and told that I couldn't eat for a few more hours. That metallic taste stayed with me for the next few days.

I had brought needlepoint to work on and a magazine to read, but mostly I laid around and watched TV because it was brainless and I was so very tired. I remained nauseous my entire stay in the hospital and the feeling was not helped by the fact that everything they brought me to eat had to stay in my room the entire time. I sat there in my room among the stacks of hazardous waste - queen of the nukes. My phone was covered with a plastic bag so that the moisture from my breath wouldn't contaminate the mouthpiece. The radiology tech taped a line on the floor 12 feet from where I sat, and anyone who crossed it had to wear disposable booties that they removed before leaving. A bright yellow Hazardous Materials/Radioactive Warning sign was taped to my door, no one could be in my presence for more than 20 minutes a day. That meant the nurses only popped their heads in to deposit a tray of food on the table next to the door, and I wasn't allowed to get my tray until they had left. The techs came in to take my temperature and blood pressure periodically (I wondered if the other patients knew they were sharing medical devices with me).

Twice a day, morning and night, a radiology tech would bring in a geiger counter and a measuring tape. He would take a measurement of the rads I was emitting at 3 and 12 feet away. I filled the intermittent time with taking numerous showers, drinking quarts of water (flushing the toilet 3 times each time I used it), and obssessively washing my hands.

Yes, I was queen of my own tiny kingdom - the corner room of the 6th floor.

These boots are made for walking...

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There ought to be a rule for surgeons - no haircuts the day before surgery. Some young rookie lookin' doctor showed up to discuss my surgery with me minutes before I headed back to the OR. Underneath all that mountain man hair, my doc had a baby face - who knew?

I'm not sure which look was worse, mountain man or newbie. Once I got over the shock of that, we went over the particulars again. My nurse could not place an IV in me to save her life - 3 blown veins. So I asked if the anesthetist could do it, he knew his stuff and got it on the first try.

The next thing I knew, I was waking up to the sensation of someone squeezing my feet and pointing my toes - first the right, then the left - back and forth. It was a pair of mechanized booties designed to simulate walking and deter any blood clots (good for your health, but not so much for sleeping). I could not talk, had a throbbing ache at the base of my neck, and felt like I had eaten a pair of wool socks - so scratchy was my throat. I was vaguely aware that it hurt to turn my head. One thing they are quick to do in post-op care is to get you on pain meds. You have only to blink funny and they will bring you a darvocet or some other such pill of peaceful oblivion.

The surgeon told me that the tumor had invaded some nearby neck muscle and he'd had to remove a strap muscle. There were numerous tumors in the left side of my thyroid as well. The cancer had been headed for my voice box next, so it was lucky we got it out when we did (not too sure the kids feel the same about that). The frozen section came back positive for papillary thyroid cancer. He had been able to save my parathyroids, but they monitored my calcium levels to make sure they had not been too traumatized by the surgery.

Because I was under 45 when I was diagnosed the survival rate to 5 years out was 97% - very good news. I stayed in the hospital for about a day and a half and then went home to rest up. In the days that followed, we heard back from pathology that one of seventeen lymph nodes taken was positive for the cancer and the size of my tumor was 1.6 cm in diameter. An appointment was made for us to meet with an oncologist.

One other thing, no one had told me about the wonder that is a surgical drain. I went home with a test tube on the end of a length of catheter tubing poking out of my neck. It was a surgical drain stitched into place. I was to change the tubes and record the fluid amounts and colors as it filled. I have done some pretty grody stuff in my life, but that one is up there near the tippy-top.

I remember feeling good enough to help out in Michelle's class at school, while there a remarkably astute 2nd grader looked up at the dressing on my neck and the tube disappearing into my shirt (where the vac-tube was nestled in my bra) and asked me about it. I told him I had had an operation on my neck. He thought about that a moment and then said, "Lady, they forgot to take some of that stuff out of you." Like I didn't know I had a 12 inch length of catheter tubing hanging out of me. Just for kicks, I pulled out the test tube full of surgery drainage and showed it to him.

Was that evil? Nah, but perhaps a whole lot of misguided fun. I'm blaming the pain killers.

Maybe collecting the ooze from my neck was nasty, but it was nothing compared to the feeling when the surgeon said this might hurt just a bit and he snipped a stitch and pulled that tube out. It must've been buried about 3 inches into my neck and fished around my esophagus. I cannot describe it but I never want to go through that again. Gross.

Usually I heal fine and my scars turn out lovely, but this time was different. The doc likes to look at my neck and tell me he can fix it (um, no thanks - I'm okay with my Franken-neck).

I met with the oncologist - a woman whose typical patient suffers from breast cancer. The first thing she told me was that I had the "good" cancer. This was the third doctor to tell me this and I was not amused. I can appreciate the fact that she sees several women far worse off than I everyday and that I will most likely not die from this cancer - but it really isn't something 'good' to have. Nobody says, "Hey, can I have me some of that? That's the good cancer you know - I'd like double."

Cancer or disease in any form is a major inconvenience and usually it's still painful. Please doctors, don't discount your patients and what they are dealing with.

Okay, off the soapbox now. The oncologist, which is a fancy name for bad a** cancer doctor, told me that I would have to allow my pituitary to realize that I didn't have a thyroid anymore, thereby making it send out signals to tell existing thyroid cells to make more. While it sounds counter intuitive to force the cancer cells to reproduce, it is what lets them know you are ready to nuke the hell out of the cancer.

With thyroid cancer, you don't do chemo and rarely do you do beam radiation, rather you nuke it from the inside out. Literally. But, I'm ahead of myself. Your thyroid is an important part of your body, it takes the iodine found in different foods and converts it to thyroid hormones, and releases them into your bloodstream where they control your metabolism. Every cell in your body needs thyroid hormones to regulate their metabolism. Know what happens when you don't have enough thyroid circulating?

Everything sl o w s d o w n.
Like that. And when you are thyroid deprived and getting prepped for a Radioactive Iodine scan and potential treatment - you must eliminate as much iodine as possible from your diet. Which is actually quite a healthy way to eat, but requires mucho effort on the part of the patient.

Some of the side effects of being hypo (very low) thyroid are slow reflex times, poor concentration and memory, depression, hair loss, extreme fatigue, feeling cold all the time, and last but loveliest - potential tremendous weight gain. It is basically like you are living under water in a very cold swimming pool. Everything moves slowly and you freeze your butt off, and you can't spell to save your life.

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Sorry, that's it for now. I'm halfway throught the bloggy hiatus and I'm getting all sorts of necessary stuff done. I'm afraid I don't have any new links for you, but if you click thru on some of the links in the blogroll you'll find lots of great things to read. 'Til next week - have a good one!

The induction and arrival of one Miss Ellie

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The surgeon's office called and set an appointment for me to be seen the following Wednesday. With any luck, our daughter would be here on September 10th.

We arrived at the hospital early on the morning of the 10th, even though I was only dilated to 1 and hardly effaced, the doctor thought some prostaglandin gel might speed things up.

It didn't, really. By 2 that afternoon, nothing had changed so they started me on Pitocin. The baby was super high (I think she just wasn't ready yet). I walked and walked around the halls, all the while trailing my IV bag of Pit - this was not how I had envisioned this birth.

Every so often they would crank up the dose of pitocin. By 5 p.m. it was as high as it could go, and, though they weren't painful, my contractions were every 2 minutes.

The doctor was going to send me home and have me come back to try again on Monday. He checked me once more and she had finally dropped. He broke my water then - there was no going back. All our children had been born 2 hours after my water had been broken, so I was anticipating holding her very soon.

But it was not to be. I was so sure she'd be born before September 11th, but at midnight I was only dilated to a 4. I asked for an epidural. I'd had it and was in a lot of pain. Alot of unproductive pain. I slept for an hour or two and was awakened by the realization that the epidural was no longer working. The anesthetist was called in because I was suffering so badly. They checked me and I was finally dilated to a 7. This is where I know I would've died had I been a pioneer woman on the plains. Zero childbirth pain threshold.

I paged Sarah, my wonderful friend and doula (I know they are there to help you through the pain, not an epidural, but she had been through this much with us and she deserved to see the birth. Besides, I was only numb from the birth canal down). My uterus was completely awake and irritated with me - who did I think I was having a baby before it was ready? Sarah really helped me through it. It felt like an hour of pushing, but it was really only 5 or 6 pushes and the very large, very purple Ellie had arrived (for about the first 5 minutes she was Sophie, then we decided Ellie suited her better). I held her briefly before the nurse took her and rubbed her briskly. I was never so happy to hear a cry in my life! She had taken over 20 hours to get here, all the others - no more than 6.

I felt so good I wanted to go home later that day. They kept us at the hospital for 48 hours because I had once tested positive for strep B and they just wanted to observe her. Good thing, because her bilirubin levels ended up being very high by the time we left. We brought her back for another test the next day. They were high enough that we had to put her under the bili lights. They basically look like an old Samsonite suitcase turned into a baby tanning bed.

It was all to no avail, the next day her bili levels were so high she had to be admitted to the hospital. They put her under their hi-tech lights. She was so dehydrated it took 6 or more tries to place an IV. It ended up being on her head and believe it or not, at just 2 days old she reached up and pulled it out. It took another 2 hours hours to get one placed on her foot. We were there just over 1 1/2 days. My mom was so helpful through everything. She even stayed overnight at the hospital so I could rest and continue to recover.

We kept up the bili lights at home for an additional three days, and my mom took the night shift. It was just about impossible to keep the blindfold on Ellie, she'd squirm until it came off and we'd have to wrestle it back on.

While she was at the hospital, we had my surgery consult and found out that my type of cancer is very curable, but that my thyroid had to come out. He scheduled me for his next surgery date - three weeks out. When we met the surgeon, he looked somewhat mountain man-ish. His hair was out to here and he may have even had some facial hair, but when he talked about how careful he would be during the surgery to preserve my parathyroids (which are embedded in your thyroid but are responsible for the calcium levels in your body) and my voice, I felt a little more confident in him.

He explained that while I was under, he'd send a frozen section to pathology to confirm the cancer diagnosis and then remove the whole thing if it was positive.

On Pins and Needles

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The pathology tech leaned over her microscope, "We have a winner!"

All I could think was - Thank goodness she had enough of a sample and that needle didn't have to go back in my neck. I wonder what it would've felt like without the numbing agent.

I asked her what her first impression was. She said at first glance it didn't look like the ordinary stuff you'd see in a cyst, but that it didn't jump out and say cancer! either. Also, because it was Friday and just before Labor Day Weekend, I shouldn't expect the results before Tuesday morning.

On the way home, my airway started to feel numb. It was a terrifying experience and I know I obssessed about it - poor hubs, he listened to my anxiety helplessly. It felt like I couldn't swallow or turn my head without some sort of strange sensation, or for that matter, telling my husband all about said strange sensations.

(Earlier that week, he had gone to the doctor with his mom to learn the results of a biopsy she'd had - she was diagnosed with Stage 3 melanoma. So, not a very good week, medically speaking).

His sister and her family come every Labor Day and stay with us - a tradition we really enjoy and a nice distraction from all the waiting. But when I hadn't heard anything by Tuesday afternoon, I called my doctor's office. I was told that the pathologist had not released his report yet, but that it would be available the next day. I called again the next afternoon, all this waiting was killing me - I am not a patient person by nature.

I was at Target exchanging some shoes for Tyler when my doctor's office called me back, and it was my doctor on the line. That was my first clue. He said that the pathologist had just called him personally. That was my second clue. I already knew if he, not the nurse, was calling me that it was cancer. I was wandering around the shoe section slightly dazed, my mind brimming over with questions. The biopsy was positive for Papillary Thyroid Cancer and my thyroid would have to come out. The doctor told me who the pathologist had recommended for the surgery, and to also plan on being induced that weekend. They wanted me to have the baby earlier so I could recover sooner and have surgery within a few weeks.

I managed to hold it together during my conversation with the doctor. Ever practical, I hung up, exchanged the shoes, and called Mr. Triumph as soon as I was in the parking lot. "The doctor just called," - long pause while my throat got a lump in it the size of an egg, "I have cancer." Then I cried.

I was not at all brave, but I think maybe the pregnancy hormone overload had something to do with it. I mean who finds out they have cancer in the shoe section of Target? And then calls their husband from the parking lot? I think cancer is really a face-to-face sort of unveiling thing, not a telephone bomb-dropping deal, and most especially not a voice mail thing.

I cried from the shock of hearing the word cancer applied to me. Cancer is the thing that happens to other people. But it was happening to me, and I felt it was going to rob the spotlight from the baby we had waited for, for so many years. At that moment, I was very upset at the universe and the unfairness of the whole thing, but I guess cancer is never a matter of convenience. No one ever says, "Hey, next year looks good - how about then?"

Mr. Triumph and I talked briefly and agreed we needed more information from the surgeon before making any decisions or telling the kids. I regained my composure. We hung up and I called my mom. I felt like a little girl again, like I had scraped my knee and was going to my mom for comfort and the reassurance that everything was going to be okay - only there's no bandaid and a kiss big enough for cancer.

Of course I cried like a baby. I had no idea what was in store for me or what the outlook was - would I even get to enjoy this baby? I asked her to call and let my siblings know because I was in no shape to speak to anyone. One of my sisters took it almost as hard as I did. That was before we knew anything.

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A Pain in the Neck...

A little over two years ago, I walked my mom out to her car and said goodbye. I stood there on the driveway as she pulled out, one hand resting on my lower back in the classic pregnant woman pose.

I had been feeling a sore throat coming on and massaged just under the back of my jaw assessing whether my glands were getting swollen. Phew, they were just normal size. I dropped my hand, lightly brushing either side of my neck, down to my side. Did I just feel something? I touched my neck again, this time more slowly, deliberately. I stood there looking at the mountains and realizing there was definitely something there - something that didn't belong.

I went inside, into my bathroom and looked in the mirror. Could this have happened overnight? How did I not notice this thing bulging out of my neck? It was about the size of a Globe Grape and about halfway between my chin and collarbone on the right side.

I started googling terms like "neck, cyst, tumor, larynx" and most of the results indicated that it might be something to do with my thyroid. I found a self diagnostic test for a thyroid nodule. It told me to tip my chin back (to push the thyroid out), drink a glass of water, and see if the bump moved when I swallowed (it did). I didn't wait for my husband to get home, I got that glass of water and went back into the bathroom to see for myself.

Do you know how hard it is to drink from a glass, swallow, and look in the mirror at the same time? Try it. First, tip your head back so you can see your neck, then move your eyes so they're looking at the mirror, and then swallow - several times. Not too tough? Maybe you have to be a bit anxious and also nearly 37 weeks pregnant.

I knew this was something I couldn't ignore, and was somewhat comforted by the fact that I had an ob/gyn appointment on Monday (this being a Friday, it was relatively soon). Over the weekend I read everything I could about thyroid diagnosis, it's just the kind of girl I am. And also obsessed over the feel of something foreign on my neck.

On Monday, the doctor examined me and told me the rotten news that I was only 1 cm and about 20% effaced. I told him about the lump on my neck. He felt around, said it was common and most lumps in necks are nothing to worry about, but we ought to order an ultrasound and fine needle biopsy anyway. He was able to schedule it for Friday that same week.

I read up on Fine Needle biopsies and neck ultrasounds - I wanted to know what they were looking for and I wanted to be able to tell if there was something they weren't telling me.

My husband missed work and went with me to the appointment. Usually for an utlrasound of your neck, you lie down on your back - unless you're very pregnant. They had me semi-recline and tip my head way back. I can't tell you how hard it was not to be able to see the screen and try to figure out what was going on. He gave me a sort of play-by-play. Every once in awhile, I would tick off the ultrasound tech and turn my head to see what she was doing. I knew that if the ultrasound looked 'hot' or red instead of blue where the tumor was, that it was more likely to be cancerous. I'm pretty sure I saw red.

A doctor came in and shot some lidocaine into my neck. Whenever someone tells you this will sting a bit - brace yourself, because it usually means it will burn like hell. He didn't wait very long before he had me tip my head to the left. He took out a needle (I had to peek, and wish I hadn't). The pathology tech wheeled her cart into the room and told me she was going to take a look at the sample the doctor pulled out to make sure they had enough 'material' for a diagnosis - that way I wouldn't have to come back.

Pretty much the numbing shot was pointless. I felt everything he did. There is nothing fine about a Fine Needle Biopsy. The needly is long and sturdy. And it is not one simple little poke. It seriously felt like he was fishing in there. He told me he was trying to get samples from all over the nodule. He would pull back on the syringe, and then jab some more into my neck. At the same time, the tech was using the ultrasound wand so he could have a guide. About four times it felt like he had stabbed my larynx.

I am not normally a claustrophobic person, but I was starting to panic. It really hurt and each time he hit my airway it really freaked me out. After about ten different jabs, he handed the needle over to the pathology tech. I was hoping, praying that she had enough 'material' for a diagnosis, because I did not want that needle back in my neck.

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It's that time of year again ...

Edited to say: I think I have scared you all off. Anyone can vote in this poll, it doesn't ask for any info from you - it's anonymous, you don't even have to have a google account. So vote already.

I'm slated to begin going off my thyroid medication so I can get my cancer scan. It usually takes about 5-6 weeks for my blood levels to get where they need to.

Let me tell you, it's not a pleasant 5 weeks. The first couple aren't bad. I have to eat an iodine free diet for the test results to have the best accuracy. Did you know that iodine is in just about everything?

So basically, I can eat chicken (fresh from the butcher only), some salads with oil & vinegar dressing, and some fruit. No milk products, no chocolate, no eggs, no seafood, no iodized salt (therefore no eating out), and so on. It is a pain!

At the same time, I begin to get really tired - and I mean really bone achingly tired, my hair falls out & thins, I get really cold, I gain weight if I so much as look at food, and my already non-existant short term memory becomes laughable.

I tell Blaine the same stuff over and over and the only way I can tell that I've told him already is the glazed-over look in his eyes. I will be standing in a room and have no idea whether I was just coming in to get something or leaving.

Can you tell that I really dislike getting ready for this test?

I have had to do it the last two years, and because the cancer was still around I had to do a treatment both times. The treatment is equivalent to swallowing 6 weeks worth of radiation treatments. I am allergic to it and am covered in a rash for as long as it's in my system (5-12 weeks), I lose my taste buds (they do come back), my salivary glands swell up and hurt like the dickens (& that is a very attractive look akin to Chip or Dale storing up nuts for the winter). And I have to be away from my kids for at least two weeks - because I actually emit radioactivity. I guess you could say I'm "hot," but only for two weeks. Sigh.......

I know I am whining, but this cancer thing is a pain in the butt. I guess I figure that if they haven't killed the cancer by now, they probably won't be very effective with the regular treatment anyway. The only thing that has me hesitant is that every once in awhile, I can feel something on the opposite side of my throat when I swallow. It's probably just scar tissue.

So, here's where you come in. I'd like to hear what you would do, and it may or may not influence my decision (Oh my gosh, I feel like a Clinton).

Please vote in the poll below.

What would you do?
Skip the scan, nobody dies from this cancer anway
Put it off another 6 months
Get the scan, take the treatment (if needed) & get on with life
Why are you asking? Do it already!
Poll starter: Corrie See Results