Monday, September 30, 2013


Somehow, posting to Facebook and letting everyone know this is happening somehow makes it more real. I am really looking to see if I have cancer again, and possibly a different type. That is happening, for real, right now. To me.

I can't believe it's actually happening. I am living it every day, but suddenly it feels... surreal. I can't believe it's happening.

In preparation for the biopsy I can't have any Tylenol, Naproxen or Ibuprofen. It sucks because my neck is aching and I'd love to take a little something. Randy pointed out it probably feels like this because I know I can't have anything. I'm sure he's right. Still.

Thursday, September 26, 2013

Little break

I think I might take a little break from writing, a conscious decision. Thinking about all of this is causing me to feel really scared and anxious and honestly, I just can't stand feeling that way.

Here are the changes to date:

I'm starting to be pretty convinced after all these blood tests and whatnot that maybe thyroid cancer isn't my problem, and this other L word is. Oof. I just said it. Kind of lead-balloon feeling right now.

Signs of lymphoma are night chills and sweats, enlarged lymph nodes in the head and neck, rubbery/firm enlarged lymph nodes, fatigue, and some other things. They're sort of amorphous enough to be attributed to many things. This word keeps popping up though, and I know that Dr. B. is thinking in that direction as we proceed with testing. So it's on the table, in a way. No, not in a way. It's on the table.

I have an ultrasound scheduled on the 4th and I was sitting in the bath tub last night thinking how dumb it is that I would miss the opportunity to have a biopsy. I'll be in Seattle at the one place where this ultrasound is done, and if I don't have a biopsy at that time, I'll just have to come back later to do it. I summoned my courage and emailed my endocrinologist (Dr. K) and asked her to please make sure that the biopsy is ordered. She replied supportively and said that she changed the order and that if they felt at the time it was needed, we'd go for it. This causes me to feel relieved and doubly scared. If someone says, "We need to do a biopsy", that means something's wrong. I'm going to be a wreck next Friday.

On October  7th I'll speak by phone with my endo and we'll discuss my ultrasound and my blood test results and get everything put into context. I'm asking Dr. B. to correspond with Dr. K. so that we're not doubling efforts for no reason, and we're not missing anything that falls in between both their care of me.

I'm shaking just writing this post. I woke up this morning at 5am and couldn't get back to sleep for two hours, because once my brain remembers that this is all happening, I get scared. I spend a lot of time just breathing, wiggling my toes and remembering that waiting is the hard part, and that I can just stay busy until next Friday. It seems an eternity away.

After the ultrasound I have the phone consult with my endo, and will set one up with Dr. B. We will at that time set up the x-rays of my abdomen I'm assuming to check for organ enlargement that generally comes with lymphoma. Fuckballs. So... yeah. This is my world right now. Doing my best to just keep distracted because when I'm not thinking about all of this, I'm actually pretty damned happy. Things are going really well right now and I'm set on enjoying it. But sometimes.. it's just all too much.

So maybe I'll not write for a bit, and give myself a break. I don't know. I canceled my therapy appointment for financial reasons, but I'm also dreading seeing her and potentially talking about this because in some way it will make it land and become real. I'm keeping the terror at bay so far, I'm just scared, and that is bad enough.

Wednesday, September 25, 2013

Biopsy land

Not sure I mentioned that when I met with Dr. B, she wants me to have a biopsy done. I think I kind of skipped over that information in my mind yesterday, and then I was at a birth all night last night so too engrossed to think about it. Shit. I mean, I knew that it was going to happen, these lymph nodes are enlarged and not going away. Biopsy must happen.

Still. That's a cancer word.


I got a bunch of blood tests back last night and they were allll normal. Yeah! I don't know what that means but I'll take it! The Thyroglobulin test was not normal, it was .9. NOT the number I expected, that's super low and weird. I don't know what it means, going to have to do some research today.

After Thyroglobulin, my TSH was 23.7, and my Tg was .9. So weird! They should both be high I think, or both be low. I'll have to crack the book (internet). My Free Thyroxine was 2.08. What does that mean? I have no idea.

Bugger. I want this to be simple and it's not so far. I want something that points me solidly on one path and nothing is. So frustrating.

I can say that my thyroglobulin should be headed down, not up. My previous tests were .3, .7 and now .9. Gives me the shivers. That's not so great.

Tuesday, September 24, 2013

Doctor's Appointment

So today I met with my family practice doc, Dr. B, to discuss some other symptoms that are up right now. In combination with the enlarged lymph nodes, I get these weird night chills. I am so cold that I am covered in goosebumps and shivering hard, and under my electric blanket (on high), with blankets piled on top, snuggled next to my husband too. I just feel like I can't get warm. Then I fall asleep and wake up in a wet sweat from head to toe, and after I cool down, I sleep just fine after that. It's random, it happens a couple of times a week, and when I suggested it to the endocrinologist she said something along the lines of, "that needs to be checked out, but not here, today." It's just not her area. So I took the hint and made an appointment. Today was the day.

The doc examined all of my lymph nodes and in my chart wrote that the ones in my neck and face are enlarged. I have lymph nodes in my face?! She is doing some blood work and based on those results we will need to look at a chest and abdominal x-ray, which... I have some feelings about. Nothing makes you more skittish about x-ray than having had cancer, let me tell you. But right now I'm just going to sit with this and wait and see what these results say. There was a time when I expected my results to be normal, and unfortunately... I don't anymore. I am ready for all the possibilities. It kind of sucks, like maybe some innocence was taken away by having had cancer.

So she did throw out the big "L" word, 'lymphoma', I was hoping not to hear. We're not looking for that specifically, we're looking for ALL possibilities, but something is definitely up. I'm hoping between my family practice doc and my endo we can figure out what's happening.

Randy asked me, "How are you?" I felt really okay until he asked me, and then I started to cry. So just.. don't ask me, unless you are ready for tears, because I really am okay, I really am- and the tears are right under the surface.

Assuming all the results are normal, we should have them all back by tomorrow night. Let's hope for that.

Monday, September 23, 2013

For tracking

Just because going through my blog over time has been helpful because I've included details, I'll throw this in there. My TSH result on Friday was 23.7. That's crazy, but as far as post-Thyrogen, I understand it's actually quite low.

No clue what it means, if anything. Doubtful it does. Need more info!

Sunday, September 22, 2013

Forgot to mention

I forgot to mention that I had my blood draw Friday. The tech told me my TSH would be in on Friday afternoon/evening, and the fact that I haven't seen it yet tells me it was flagged as out of the range of normal. I think that's to be expected? I'm not sure. I'm still trying to wrap my mind around all this. I'm not worrying right now. It's not that I've decided not to, it's just... not coming up. We'll figure it out eventually. Today, I don't want any moments stolen by the impotence of worry.

Feeling happy

The nice thing about all of this is that since I know what's ahead, pretty much regardless of whether I have cancer and whether or not it's metastasized, I know what the care trajectory is. It's pretty much a menagerie of surgery, radiation, and watching. It can come in many orders, it can come more than once, but that's pretty much it. Let's face it, we're talking about a cancer with a very high 90+% survival rate, even with recurrence. (It's still cancer, there fear that you will be in that minority still very much exists, especially after you think you would never get cancer, and then you do. Suddenly, everything is on the table.)

I told my aunt that I am 'defenseless'. When something lands on me, I burst into tears and cry like no one's watching, it doesn't seem to matter where I am anymore. I don't have the high walls that I used to hide my tears behind in place anymore, this whole adventure has knocked them solidly down. In the middle of those spaces, I feel really happy- lucky - blessed- full - different - changed - loved - valued - transitional - joyful.

I can't say I'm depressed. I have hard days, many of which I share here. But mostly this last week or so, I'm having great days. Not just good days, but great days, where everything seems possible, and where I just feel happy about getting to do the basic things like vacuum my floor or have dinner ready before Randy gets home. These things tickle me and make me feel pleased with myself. Sitting with my birth center partners and letting the challenge of working with a new group wash over me, but not silence me, I get to just enjoy the process. I get to be present, and I get to choose to let the moment fill me up, rather than break me down. I can't choose it all the time, but I can choose it now, and I am.

When my daughter climbs in bed with me in the morning and rubs her legs against mine, and our skin feels so good together as her hair covers my pillow and she kisses my nose until I wake up, or when the boys come home from school and think to ask me how my day was, or even hug me for a long time, thank me for cooking dinner, when my husband's face lights up when he sees me - these are the moments that make up the rich colors of my life. The other ones do too, the hard ones, but these ones dominate.

We really are all things. All things.

Friday, September 20, 2013

Signs, signs.

Driving down the road from my blood draw and I see a car turning off to my right. On the back window it says, in great big white letters,

Cancer Free Mom & Wife!!

Maybe it's a sign. :)

Thursday, September 19, 2013

Dull roar

Ahh... day to day. Letting things go. Making some decisions about my future that mean shifting and changing, but feel good. Being home more, and not because I have 'things to do' or because I haven't been home in a while, but because it's safe and cozy here, and I don't want to talk to people, or visit.

Today I ask myself, "What if I don't have cancer?"

Yesterday I had some life-changing realizations - facilitated by the fact that I am cracked open by this mystery unfolding in front of me. Am I going to have to dance with cancer again? I'm already on the floor, waiting to see if my partner will step up, apparently. It's okay, because even if I do not have cancer, I do, at the same time. I know that's hard to understand, but it makes complete sense to me.

My entire life I've worried that if I was too much, too big, too much personality, too high-need, that the people around me would eventually leave. I would tire them out, they would run out of love for me. This thought has burdened me my entire life and when I had cancer before, made it hard for me to talk about what was happening for me. I felt like I was taking up too much time in people's minds and hearts, that eventually they would get sick of thinking about me and all of the 'big' stuff in my life. Then my mother died, and it was the same thing. I knew that I was entitled to feel sad, but not so entitled to talk about how my soul is crushed and ground into pieces I do not recognize, and that I am slowly rebuilding but I do not know the architect.

A friend said to me recently, "Kristina, you're just having your life, just like everyone else. You didn't choose cancer, you didn't choose for your mom to die. This is just what's happening." It really hit me in that moment, that I am not special- not in some way that means people will stop loving me when they wouldn't stop loving someone else. That I'm somehow not worthy of being worried about and cared for, and that I will exhaust people.

Yesterday I was driving to a friends and I was kind of dreading the visit because I knew we'd just talk about what was going on for me, and I worried she'd want to talk about anything but that. She and I talk a lot. Then I imagined her worrying about all of the things I'm worrying about right now, and asked myself, "Would I ever NOT want to hear her process what was going on in her life?" Not for a second would I feel that way. If I did, it would be me being tired, but not her being too much. I burst into tears driving down the road.

These issues have plagued me my whole life, really causing me to hold back from needing anyone other than myself or my husband. I worry about exhausting him too, that if I get cancer one more time, or I get a worse kind, or some other dreadful thing happens to me, that he'll leave me because it's just too much work to be my husband. He reassures me when we talk about it but I just couldn't believe it.

Now I feel like I've stopped dragging this giant stack of luggage behind me, I just set it down gently and stepped away. I haven't walked far, I'm still in the midst of adjusting my center of gravity around this shift in weight. Who will I become if I can ask for help? If I can be emotionally  naked without worrying that people will take care of themselves best by leaving me behind?

So crazy, this cancer-venture. It never fails to give me enormous opportunities to move things around in my head and my heart. It doesn't matter whether I have cancer right now or not, I'm still in the midst of experiencing it all, being churned up, isolating, reducing, becoming smaller so that I can retreat and restore. Hopefully some day I can do all that without the threat of a life threatening illness. ;)

Speaking of which, I have my blood draw tomorrow. I wasn't nervous at all about it until about five minutes ago when I realized that there could be information that arises that points us in a definite 'be concerned' direction. It won't point us necessarily in a 'don't be concerned' because of what it's looking for and how, but depending on the numbers we get... well, suffice it to say, there is a little bit riding on the numbers being super low. The last thyroglobulin number was .7. Let's keep it there, okay?

As soon as I know, you'll know.

Wednesday, September 18, 2013


I think my medication is off. That could be a big reason why I feel cold all the time. It's not like, ooh, it's chilly today! when no one else is cold. It's a giant chill that washes over me, breaking my entire body out in goosebumps. Nothing warms me up, it lasts for a little while and then goes away.

In December I got very lazy with my medication and my TSH went up to 20. That's a pretty crazy number, labs look for a range of .5 - 4.0 as a 'normal' range. I didn't feel good, I was constipated and very sensitive to cold. I didn't break out in chills like this, but if it was even remotely cold, I would experience it as pain. It was sucky, I like to be cold!

So this is weird, but I am just wondering if maybe it's that my medication is off and things are jacked up. I hope so, that's fixable! I'll take easy fixes. ;)

Kind of lost my shit at my husband last night about kale. I think I'm a little tense. He says I need a good cry and I am sure he's right, it just never wants to come at a time I'm not with other people and can't just burst into long, sobby tears. I'm talking, grocery store, not hanging with friends. I'm NOT going to fall apart in a grocery store.

Today will be great. I don't have to think about it, so I'm going to hang out with a friend and come home and clean and cook dinner and hang out with my family, and go to bed. That sounds perfect. :)

Tuesday, September 17, 2013


I feel like I'm swingingly wildly from doing a good job letting go and moving forward at an organic pace, meeting the moment, and then clutching at anything that seems remotely familiar while battling the urge to burst into loud and what will surely be, public tears.

I do not feel that desperate urge to scream to the world that I have cancer. For one thing, I don't know if I do. Emotionally, it feels the same. It feels like I already know I have cancer. It's not like manifesting it, it's knowing that like Schrodinger's cat, I will always be IN and OUT of the cancer box. Forever. So whether I have it or not, both are true, and I get to have all the feelings and worries that come along with that.

Yesterday and today I had my Thyrogen shots. I'm going to write about it a bit because information just does not stick in my head these days and repeating myself helps, hopefully. I realize you may have read this here before but it helps me, so just bear with it.

The thyroid has these little glands on it called parathyroids. They don't get removed during a thyroidectomy, the thyroid tissue gets carved away from them so they remain intact. Consequently some cells get left behind. Many patients have radiation treatment which ablates these cells to make sure that absolutely no thyroid is left where cancer can resume growing.

I did not have radiation as my cancer was on the borderline of what they feel 'requires' radiation. They left it up to me and I decided not to have it. Thus, there are thyroid cells left behind. The Thyrogen shot acts like TSH (thyroid stimulating hormone), basically telling the remaining thyroid cells to do their thing. Thyroid cells (cancerous or not) will release thyroglobulin in this situation, so when we do a blood test and look for Tg, we know that there are some thyroid cells remaining (but it doesn't indicate whether or not they're cancerous).

You want multiple readings over time, and you want it to trend downward.

I looked at my test results again today and the first one I had was .3, the second was .7. I'll have the blood test on Friday and once I have that number, should be able to see a trend. It should trend downward. If it trends up, that's no bueno, so that's what's we're looking for with this next blood draw.

I hope that all makes sense. That's what I'm in the midst of right now. The shots don't have much in the way of side effects for most people, just some fatigue and flu-like symptoms. I am having that, just a bit- queasiness and a general 'off' feeling.

I've started talking about it all a little more freely. I've spent my entire life worrying that I was burdening people any time I needed something. Surely they'd run out of tolerance for my neediness and go away from my life. I have always tried hard to just take care of myself and not need other people. When I was 35 weeks pregnant and finding out at a doctor's appointment that I needed to be rushed away for a cesarean because my baby was in distress, I didn't call anyone, because I didn't want to bother anyone. I figured they'd be irritated to have to find babysitters or leave work or whatever, so I figured I'd just go it alone if Randy couldn't make it on time. The irony is that if a friend told me that story, I'd be crushed to think that she thought she'd bother me- but the shoe is on this foot and that's exactly how I felt.

So this whole thing is hard for me. I don't want to wear anyone out by talking about it, and I remember feeling this way last time, too. I have a therapist this time but she doesn't know anything about all of this yet, so that will be a fun appointment next week.

I had a talk with a friend the other day who said, "Kristina, you're not burdening other people by just living your life. You're just responding to what's happening in your life. There's nothing unusual about that. We're all just doing that."

I felt like I finally got it, I finally realized that it's okay for me to say that this is happening to me right now. If people feel burdened by my needs, they'll take care of themselves and move on, but it doesn't mean I can't or shouldn't have the needs I do. I need connection and to laugh, and to be able to fall apart while driving down the road unexpectedly, and to suck my tears in when it's inconvenient to be a mess and not be questioned when I do it, and to talk about a million other topics and come back to this one over and over.

I'm grateful to have come as far as I have in the last year that I can be with this whole thing in a new way, even if I have to be with it in the old way, too. I was telling Randy that I like to do things the 'optimal' way- the way that will leave everyone feeling heard and supported and connected, and if I can get by without taking a hit, awesome. Today I just am getting through, and sometimes I hurt people's feelings or overreact and I don't mean to, but I no longer restrain myself to the point of always responding 'correctly' with calmness, generosity, and compassion. Sometimes I just.don' Sometimes all I can do is walk away and close a door and breathe deeply, leaving the other person to wonder what tornado just swept through the house.

Somehow this feels more authentic to me, to react instead of.. respond. I never got to do that, and here it is, being thrust on me- and while it's hard, it also is very liberating.

Monday, September 16, 2013

Sick of myself

I know I write for me, and not for you. I have to admit that as churned up as I am right now I can't bring myself to come here and talk about it because it just feels like the same old shit we've already been through together. It exhausts me, it must be exhausting for you. I feel like all I can say is the same thing over and over... I know I'm processing, but honestly I am kind of sick of myself.

This whole process is so intense and in its own way traumatizing- to a smaller scale but still I feel like something is slowly being sucked out of me that I will have to work very hard to shove back in. My neck is just so uncomfortable. Not constantly but when it kicks up, it is actually very distracting.

Because I have no answers, I still am in the space of wondering if this is all in my head- if I am just somehow crazy and witchy enough to manifest my own symptoms of something that doesn't exist. Like a pseudo-pregnancy. All the symptoms, none of the baby. Maybe this is the same thing. People ask me, "What does your intuition say?" Every time I hear it, my stomach drops and I feel a little like throwing up. No 'thought' appears necessarily but my body knows something is wrong, even if my head is an earthquake of confusion.

In some ways this is harder than last time. No, it really is harder. Last time I would have moments of fear, that I could have cancer (oh dreaded cancer!) and that it could be the worst kind and that I would have to tell my kids that I was going to die. Those moments weren't too often and didn't last too long. I remember last year as having more edges- edges in between the thoughts, and fear, one moment separated from the next.

This time I feel so run down by it. I'm grieving the death of my mother as I have to let her beloved dog be moved to someone else's home and life and I will likely never see him again. I have to take her house down, and sell the property where she lived the happiest years of her life with her husband, and where her ashes lay. It's as if she's dying again, because the grief is just barely under the surface and springs up dramatically whenever I start to talk in any depth about this.

Layered with that is this underlying drone. Sometimes in the quiet of my heart, when things aren't busy and distracting, that drone rises up and drives out everything else. I feel weighted down by the idea that I'm back here again. When I first saw the endocrinologist, it hadn't quite hit me that I was being tested again for cancer, until I sat down and wrote those words here. Now that I know it, and that my future for a little while will be moving around appointments and tests and waiting for results, it just feels like so much.

So I think about it a lot, and when I am too busy to think about it and I get the chance to make love, or laugh my head off, or see something so beautiful it cracks my heart right open, it is delicious and my heart feels lighter. Those experiences quiet that background noise, and I am grateful that I can do both things. I don't have to miss out on my life and my daughter's first day of Kindergarten or a trip away with my husband, or coffee with a friend, because I am sad or worried. I just keep living.

When the moment ends, and the quiet rises up, and I'm sitting alone in my car, there is no volume at which I can set the music this time that drowns it out. I sing as loud as I can but it doesn't work, it just makes me more sad. Maybe I just need to feel REALLY sad and then I can take the pressure off and let go a bit, because this is literally exhausting me. I am tired all the time, I got to bed early and crash hard. I am sure it's the pace I'm working, but it's also just emotional exhaustion.

I want to talk about it all, and I don't. I am going to say all of the same things every time, and it makes me feel better to say it again, and it also feels like a waste of breath, and it feels tiresome. I'm sick of sitting in this place and ready for some movement.

Today I will get my first Thyrogen shot and tomorrow my second. Friday I will get my blood drawn and next week we will have some information to look at. It won't be anything conclusive and I'm trying hard not to read into anything because I just don't have enough information to have a good context. What I'm most looking forward to/dreading is the ultrasound. IF they find something, I'm back on the biopsy/cancer train, and if they find nothing, what the fuck is all this and how do I make it stop??

30% of people with the kind of cancer I had have recurrences. The prognosis is still fabulous. I am not worried about dying. I'm worried about cancer, and biopsies, and being in pain, and radiation treatments that will poison my body. I'm worried that I will never get to NOT worry about this. It's wearing on me.

Friday, September 13, 2013

Building up

It's been a beautiful, challenging, hard, delicious week. Randy and I managed to steal away to Nevada & Utah for five whole days alone- five days with no kids! That hasn't happened since we first got together, directly after which, we got pregnant. ;) It was wonderful to have that focused time to just be a couple and have conversations sans interruptions.

As we prepared for the trip I had a few concerns (mostly anxiety based) that managed to melt off as we got closer to leaving. I was excited to go and we drove straight down to Wendover, NV in one swoop - 14 long hours of driving.

What I didn't expect was that this would give my brain time to mull over everything that's coming. Not from a planning perspective.. I don't even think I was thinking about it, per se. It just was churning in the back of my mind. My lymph nodes were really bothering me on the way down, so much so that I took Advil because I was so uncomfortable. This of course distressed me.. why are my lymph nodes swelling and why are they hurting? I know the likely answers, the 'crow flies' answers that go from symptom to diagnosis without passing go, and I just have to go down that rabbit hole a little bit from time to time.

I think I thought that after my endo appointment that I would be reassured that I was 'just being dramatic' and that the lymph nodes would settle down because they're only activated because I'm a freak. But it didn't reassure me, and they're acting up still, and this just keeps me processing through the possible outcomes. Add to this that I had mentioned some other random symptoms to the endo and she made a face, paused and said, "Well.. that's definitely a symptom of other things that should be checked out, but for our purposes I don't think it's part of this." She didn't say more but it left me wondering what the hell she was talking about.

Basically at night, I can get very, very cold. I lay in bed and I shiver hard and for a long time, no matter how high my electric blanket is on, no matter how many blankets are piled on top of that - it's a fever-like chill with no fever. After I fall asleep I wake up in a wet sweat from head to toe. This is relatively recent, it started not long before the swollen/angry lymph nodes. I sometimes have a deep itch all over my chest that I can't scratch away. It's not all the time but it is enough that I noticed it and wondered if I was having an allergic reaction, it was so intense.

Unfortunately I visited that quack, Dr. Google, who puts these two things together in ugly ways. I guess I needed the reminder that Dr. Google isn't my friend, and to stay the hell away from him at all costs. And so I am... but I can't unsee what it said, and in concert with my endocrinologist's comment, I'm a wee bit nervous.

 Instead of dancing with that too much, I am focusing on one thing at a time. I went ahead and made an appointment with my family practice doc, to whom I will present the symptoms and let her decide which track to take. I'm not going to get really worried unless she is, but this hangs around the back of my mind like a little bug buzzing my ear now and then.

The thyroid cancer issue- my symptoms now are basically that I have now, several swollen lymph nodes that aren't going away and are at times painful. Sometimes a mild dull ache, sometimes an intense pinching feeling, it always comes and goes. Some days it doesn't hurt at all, some days it hurts off and on all day. I'm also clearing my throat many times per day which makes me feel like one of those grunty old ladies on a public bus who is snorting and coughing and making all kinds of gross noises just to breathe. Blech.

So the plan for now:

Monday & Tuesday I will have Thyrogen shots. These will stimulate any remaining thyroid (or cancer) cells to release TSH, which they can then measure to track over time. My current levels went from .2 to .7. Other than the fact that you do not want it to rise over time (because this indicates the presence of cancer), I don't know how clinically significant that change is, or if it's significant at all. This test basically gives me two shots over two days, and then a blood draw- and that number will mean more than the other two do. It's not a diagnosis tool, more a tracking-over-time tool but it can be informative in the short term with context, too.

On the 24th I meet with my family practice doctor to look into these other symptoms. Not really getting too far down the road with this in my head, just leaving it to the doctor. I really can't worry about one more thing.

On October 4th I will have the ultrasound that will look at all of the lymph nodes in my neck and especially these enlarged one, to look for size and signs of micro-calcifications which can indicate the presence of cancer.

I think the thing that sucks the most about this entire thing is that anyone can have swollen lymph nodes and be just fine. I am sad at how much time and energy and heartbreak I go through having to worry again and again if the cancer has come back.

I read on a bulletin board I visit that a woman was talking about how worried she was all the time, and someone responded that they felt like they'd turned the 'worry corner'. I loved reading that, it reminded me that it won't be like this all the time. I'm not even out of remission yet, I have four more years of clean bills of health to get through before I can say I'm cancer free, really, so it's okay if I'm a little freaked out. I had cancer less than a year ago.

In the meantime, along with all of these appointments are many other things equally energy-draining going on concurrently. I expect the next six weeks to be a bit of a challenge and I'm trying to wrap my mind around getting ready to feel good, rather than expecting to feel bad. It's not easy when all I have is worries, and no information, but I'm trying.

Sunday, September 1, 2013

Maybe it's the rum

... but probably not. I just feel very weighted upon this evening, heavy with what is happening right now. In some ways I feel very private about it, which is odd in that I'm writing here about it and occasionally people stumble here and see what's new, and they'll know. But I don't want to have the person-to-person conversations where I have to see someone's concern, or feel like maybe I'm being too dramatic, or all the other silly ridiculous things one feels when in this limbo.

Leah is in the hospital getting her chemo and in a whole new way, this makes me so fucking sad. So sad. It feels heavy and different than last time to me, because if something is wrong, I know it will feel heavy and different for me. I don't know what it is... when people hear you have cancer 'again', they have doubts and extra worries than what they had before, because they have a feeling of having dodged a bullet in that you went into remission. When you come out of remission, somehow it 'means something'. At least, that's how it feels.

I don't want to talk about how worried I am, and I don't think I feel terribly worried for the most part but then I got to sleep and have nightmares, and in my sleep I feel myself thinking about it, and I marvel that I don't seem to be thinking about it that much in waking life but maybe I'm in denial.

I'm trying to stay busy, but tonight I'm taking the time to feel sad, because it's sad that I'll always have this hanging out over my shoulder, coloring every time I get sick, or need a blood test. Once you've had some kind of cancer, you know you can have ANY kind of cancer, and it changes everything even when you have deep faith in your ability to be healthy and whole.

Sometimes I don't know if I have that faith. I try to, but.. sometimes the worry overtakes my heart and I engage the worst case scenarios. I imagine it's only human to do so. I don't believe people who say they didn't think about a negative outcome. I don't believe them.

So I'm working tonight, and weeping into my rum and coke because even though I shouldn't be, I'm letting myself medicate my heart just this once. The ironic thing is that it's lubricating the emotions to rise to the surface, which is probably better in the long run anyway. I should just go to bed.

Here's the deal as it stands now- I'm waiting to get the call to set up my ultrasound. I've done a little asking around and apparently when done by a skilled provider and especially if they know where to look (rather than just a general neck scan), the ultrasounds can find even small issues. In my corner I have an ultrasound tech who does ALL of the neck scans for Group Health in this region so he's super skilled and fluent. If he says you're clear, you can bet on it safely. The radiology report is redundant at that point, which is highly reassuring. So I look to him to find something if there is anything, and to see if we can figure out why my lymph nodes are swollen and not going down. Maybe it's still all in my head. Maybe I'm just THAT much of a neurotic worrywart that I can manifest symptoms for nothing. Let's hope.

I have to take a test that will stimulate any remaining thyroid cells that are left behind after the surgery. It stimulates cancer cells the came way, and it won't know the difference between the two so I'm concerned that this test is more routine than helpful. Still waiting to hear from my endo on that.

Basically what happens after a thyroidectomy in patients who need it, is a radiation ablation of any remaining thyroid cells. They can continue to grow cancer so we blast those fuckers out of existence. The radiation treatment is kind of gross and I was on the edge of the 'line' where they recommend it, so I elected not to do it. Consequently I likely have thyroid cells remaining.

My understanding of this test is that its best done when there are no thyroid cells, but I could be wrong. I don't know a lot about it and I have an email out ot my doc to find out more. I don't need false positives to make me lose. my. shit. so I'm hoping to avoid that at all possible costs. If the test will be useful to us, I'll do it.

Another test I can have if my HMO offers it is a whole body scan. I would take a lower dose of radiation and then they'd do a scan of my whole body. Papillary carcinoma/thyroid cells uptake radiation so anything that lights up is a problem, basically - the hope is that nothing does. I don't actually know if this test is an option for me so it's something I need to ask about.

I know we're just taking it step by step, I know that I'm not being 'tested for cancer' except that I am, again. I can still hope that everything is fine, but I know this road and it's still fraught with switchbacks and rockslides and I can't help but be nervous.

Just hanging on, hanging in there.