I Have A Lot Of Feelings

Those of you who have seen me recently probably have no idea, but this has been a tough couple of weeks.  Most of the time I hear that I look great (aw, thanks!) and seem so much better.  And that’s true, I am so much better… except when I’m not.  Unfortunately recovery is not a linear thing, physically it is very up and down, and emotionally…well, I’m sort of like- I don’t even go to this school, “I just have a lot of feelings.”

If you didn't get this reference, I'm not sure we can be friends anymore!
If you didn’t get this reference, I’m not sure we can be friends anymore!

I have been doing well lately- my energy is up, I feel motivated by all of the things I am doing with Mommies In Need and Best Buddies, and I actually physically feel better than I have in a very long time.  So I should be elated and grateful and happy all the time, and I am- a lot- but then I have days when the enormity of what I have been through kind of ties my shoelaces together and trips me up.

I went to my GI doctor last week.  I haven’t seen him since last December when he told me that we could continue trying a variety of treatments for my Ulcerative Colitis, but that he was not hopeful that we would be able to find one that worked and he wanted me to consider having my colon removed. So here I am, about 10 months after getting my colon removed and I can honestly say that without question I am better off without that organ that was making me sick.

Maybe because I was getting progressively worse around the holidays last year, right now, I am able to acutely remember the hours I missed on Thanksgiving and Christmas because I was in the bathroom or lying on my mom’s bed upstairs in so much pain that I could not go down and participate in the celebrations.  So it’s good to know I am better than that.  I am at a place now where, while I have not-so-great days digestively, at least I am not in that kind of pain.

But my visit with the GI was hard.  Because we discussed a bunch of things that made me realize that I actually don’t have a colon.  Which is a big deal.  It means that for the rest of my life, my body will function very differently than everyone else’s and that I will have ongoing worries that others don’t have.  For example, Curly got a stomach bug recently.  Thankfully, I did not get it, which is truly a miracle since she literally vomited in my hair.  For most people, getting a bug or food poisoning would be an unpleasant few days, but if I were to get one, there is a very real chance I would be hospitalized.  Because without a colon, I can easily become dangerously dehydrated in a matter of hours.

I knew all of the possible long-term effects when I went in for the surgery, but they are a lot more real to me now.  At that appointment, my doctor said to me that he was glad we had taken my colon out because if not I would be “extremely sick or dead right now.”

He said it casually but that statement knocked the wind out of me.  I couldn’t even repeat it to my husband when he called to check in after the appointment without crying.  I had to get off the phone suddenly so as to not have a panic attack while driving.  I guess because I am past the “might die” part, my doctor was sort of casual in saying that.  I just don’t think I understood how sick I was.  I spent so much time in the past few years pretending that I was fine when there was this devastating disease tearing up my colon, that I think a part of me actually believed that I was over-reacting and I could just live with it.

What scared me so much about my doctor’s statement was realizing just how much I had convinced myself of this delusion that my UC wasn’t really that bad.  He was worried that if we didn’t take my colon out I COULD DIE.  And yet, days before my colon surgery one of my biggest fears was that they would take it out and do a pathology report and find out there was nothing wrong with it.  That I had taken out a perfectly healthy organ and would have to live with the consequences.

I was clearly nuts- I have since become slightly less nuts.  I had been having horrible bleeding, pain, and pretty much constant diarrhea almost every day for close to 2 years and I worked myself into a frenzy thinking that maybe I was making it all up.  WTF, Natalie?

So now that I am not in immediate danger and my doctor just casually says something like that, I freak a little.  Maybe I had to be a little delusional to get through the last few years.  I know that my scale of “feeling good” is drastically warped.  And even now, I probably seem perfectly healthy to everyone because I am operating at about 80%.  I was operating at like 10-20% for most of the last year, so that jump is pretty significant.  But I am still so anemic that I have to get IV iron infusions once a week, and my digestive system is still healing and very fragile.  I can go out and have fun and feel great for short periods of time but then get so tired that I have to nap because too much activity is truly exhausting for me.  And my thyroid medication is still not balanced, so every time we adjust the dosage my system goes a little wacky.

Which leads me to the thyroid cancer.  For the last 7 or so months I have been operating under the assumption that my thyroid cancer was a thing of the past and I didn’t have to worry about it anymore, the thyroidectomy got it all and all I have to do is go in for a blood test once a year.  I could box that up and put those worries on a shelf and focus on other things.  Then I went to my endocrinologist (again a referring doctor I hadn’t seen since surgery) and she said, “I guess it was benign, huh?”  Um…what?  Turns out she never got the path report from my surgeon and had no idea I had cancer.  Lesson learned, doctors never talk to each other when they should, you need to be on top of that shit.  So I had to wait while she got the report, looked it over, and then told me that the margins were not as clear as she would like them to be and we needed to schedule some tests to see if there is any remaining thyroid tissue and if anything has grown back in the months since surgery.  If so, I will need to get a radioactive iodine treatment.

Now, if I had gotten this news right after I first found out about the cancer, I could have dealt with it and understood that it was a part of my cancer treatment.  But now, I find myself realizing that my cancer has a threat of coming back, so even if I don’t have to get radiation this year, I will have to continue getting an ultrasound every year forever and just praying that it always comes back negative.

Oh and did I mention that this type of radiation treatment has relatively few nasty side effects (which is great) but that if you take it (it comes in pill form) you are RADIOACTIVE for about 10 days.  Like legitimately radioactive, like you can’t be around any humans for the first 5 days and no where near children for the first 10.  Please remember at this point that I have twin 2 year olds.  And you have to throw away all towels and sheets used during that time, and wear plastic gloves when touching anything.  So I would basically have to go into a full quarantine for 10 days.  Again something that would have been good to know SEVEN MONTHS AGO!

I got my blood results back and found that I do have at least a small amount of thyroid tissue left and now have to wait for the results of a scan that I am getting done on Tuesday to find out if I need to turn into a walking Biohazard.  Just after that call, I went into CVS to pick up an RX and when the woman at the counter told me it wasn’t ready I had a full blown meltdown.  Tears streaming down my face, sobbing- oh btw I was getting my anti-depressant, so I guess CVS lady realized just how much I need it! Because sometmes it is those little things that prove to be just too much.  And as a friend recently said to me, “It’s ok, you don’t have to be strong all the time.”  Oh right, that is the whole reason, I started this blog in the first place.  To have a place where I could let it out, to share with the world that even when I seem to be doing great sometimes on the inside I am keeping it together with chewing gum and scotch tape. I have already dealt with too much.  It’s not fair and it’s not fun.  And at that moment I needed my stupid medicine so I could go home, pop a Xanax, and take to my bed for awhile.  I just have a lot of feelings!

On the plus side, Sebastian has said that if I have to get the Radioactive Iodine, he would like me to bite him to see if he gets superpowers.  I’m hoping for the superpower of getting our kids to finally sleep through the night on a regular basis- fingers crossed!

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5 Reasons I Donated My Hair

Will I look like a creeper when I go to the post office and tell them I want to mail my hair?
Will I look like a creeper when I go to the post office and tell them I want to mail my hair?

My hair has always been long and thick.  I mean, I hear when I was a baby I was a baldie, but for as long as I can remember it has been a distinguishing feature of mine.  I would get angst about cutting off a few inches and the shortest I ever had it is just below my shoulders.

During my long recovery I have spent a lot of time alone in my room, and since there are only six seasons of Gossip Girl, that gave some good thinking time.  At some point I came to the realization that I had never really emotionally dealt with my thyroid cancer.  I had my thyroidectomy and a few weeks later was back in surgery for my colon so there wasn’t a whole lot of time to process (if you need a reference for my unusual medical history visit A Brief Timeline of Crazy.)

But I started feeling this need to somehow acknowledge what I had been through.  So I came up with a plan- I was going to cut off all my hair and donate it.  It was going to be a big dramatic gesture and I was going to feel all self-sacrificing and noble like Jo in Little Women.  I told some friends and family about this plan and they were all like, “okaay, maybe you should take a minute to think about this cause you are hanging onto your sanity by a thread at the moment and the other day when I asked if you could write an email you flung yourself on the bed, covered your head with a pillow and said it was just too much to deal with.  So I’m not saying don’t do this, but maybe wait until you aren’t so physically and emotionally fragile.”

Well, those might not have been their exact words but I got the point.  A dramatic hair change can bring up a lot of emotions.  So I thought about it for months.  And I came up with a list of reasons that I was sure I wanted to do it:

  1. I am extremely grateful, I survived cancer without having to loose my hair to chemo.
  2. I have a lot of hair and it grows quickly, but my donation could really make a difference to a woman who is going through treatment right now.
  3. Getting rid of my hair is symbolic for me of letting go of some of the pain, depression, and trauma that I have suffered in the past few years.
  4. It feels appropriate, like a new start.  By changing my look I am celebrating the stronger person I have become.
  5. I still get to feel like Jo, or that woman in the story we all had to read in ninth grade who cuts off her hair to buy her husband a watch or something… anyway, I love big dramatic gestures!

So yesterday I did it!  My friend Chad Cline at Cline Salon chopped off fourteen inches of my hair and I am now rocking a really cute bob!

Before
Before

After!After!

And I love it, I feel lighter and free and hopeful and ready to start a new chapter of my life!  I am sending in my ponytail to Pantene Beautiful Lengths (in partnership with the American Cancer Society) and it will be used to make a wig for a woman who has lost her hair to cancer.  How cool is that?  If you get a wig from the Cancer Society’s wig banks it could be made from my hair, just treat it well- it needs a lot of conditioner.

If this has inspired you to donate your hair too, fantastic!  Let me know and we will be short hair buddies.  If you have ever gotten a wig from the banks, I would love to hear your story too.  If you don’t have enough hair and want to throw 5 or 10 or 1,000 bucks at your favorite cancer charity, great!  If you just read this and think I am amazing and want to be my friend, visit me on facebook and like My Super Crazy Life for more awesomeness (you can check out a video of the haircut) And if you just want to take a minute and think about someone you know who is struggling with cancer right now, or someone you lost, or a person who is just now getting their diagnosis and trying to figure out what to do, that’s cool too… although you should probably still like me on facebook!

Thyroid Cancer Sucks Too! (Part 2)

First of all, if you want to get caught up please read Thyroid Cancer Sucks Too (Part 1)  I’ll wait, if you want to grab a cocktail also,  go ahead, I’m sure it’s 5 o’clock somewhere… so picking up with my surgery to remove the tumor:

The surgery itself was a cakewalk, but I am probably a terrible judge because I have had 5 major surgeries in the past 2 and 1/2 years and this was the only one that did not include an overnight hospital stay.  My neck was really sore and I felt crappy for a few days, but my surgeon was wonderful and only a few months later I barely have any scar at all.

What no one was prepared for was my reaction afterwards.  See, my surgeon had never removed the thyroid of a patient whose colon was so recently yanked out (I’m special) and so did not realize that when my parathyroid (which processes calcium) went to sleep when it was separated from the thyroid (very common) I would go into severe calcium depletion.  The symptoms of this include sudden numbness and tingling in the hands, feet, and face.  When this started happening, the Dr. said to take some calcium pills and I would get better.  But without a colon I was not absorbing enough of the calcium and it got worse.  And then I had a full on freak out.

I have had some minor anxiety issues my entire life, but basically since I found out I had to have my colon removed it has (understandably I think) been getting much worse.  When my hands and feet started tingling, I knew in the back of my head it was just the calcium but then my anxiety kicked in and I started panicking that I was actually having a stroke, ignoring it, and would be dead in minutes.   Then my whole face went completely numb, and the top of my head, and I couldn’t feel my legs.  I became absolutely certain that I was dying and that I needed to get up and run to safety, but was scared to stand up on my tingly legs.  Luckily I already had a therapist on board at this point and had a slight moment of lucidity in which I recognized the signs of a panic attack and called her.  One long phone call and an ass-ton of Xanax later, I was finally able to sleep and the next day my surgeon got me on some calcium that worked and I was feeling much better.  Basically, my mind took some very real symptoms I was having and expanded them to my whole body causing a full blown panic attack, which those of you who have experienced them know is pretty much the scariest thing ever.  (Pretty soon I’ll tell you all about the one when I thought the tree from Poltergeist was attacking me- good times!)

Once the calcium thing got sorted out, there was my medicine to deal with.  I no longer produce any thyroid hormone at all so I have to take Synthroid and it can be tricky to get the dosage just right.  Too little and you are exhausted and too much can cause major jitters, anxiety and sleeplessness (all of which are things I have just fine on my own.)  It took some trial and error but now I have my dose at a pretty good level and am doing ok.  Long term I just have to stay on my Synthroid forever and get checked once a year to make sure my levels are stable and no thyroid tissue has grown back.

The strange thing is that I went through all of this without knowing if I actually had cancer or not, we had to wait a few weeks for all the pathology to come back.  When I got the news that it was in fact Stage 2 cancer ( a follicular papillary variant, which is why it could not be diagnosed in biopsies) I had some really mixed feelings.  First of all I was grateful that it was encapsulated and my surgeon was reasonably certain that she got all the nasty cancer cells and that no radiation or chemo was needed.  I also had a weird feeling of relief that we didn’t take out a perfectly healthy organ for no reason.  But I didn’t really have time to process the Cancer part of the whole thing because my next colon surgery was scheduled in a few weeks and I had to focus on that.

It is only now that I am starting to get some of the deep realization that I did in fact have Cancer.  For a long time, I felt that I couldn’t really even identify myself as a cancer survivor because I didn’t have to do chemo or anything.  My cancer suffering was not as bad as it is for many people, so who was I to complain about it?  But then I realized that Thyroid Cancer is a real cancer and it is ok that I feel frightened that I had it and pissed off that my body betrayed me and let those cancer cells grow.  It is normal that now every time I feel a strange ache or a lump somewhere in my body I worry that it might be cancer.  Once that C word is attached to you, it changes your way of thinking.  Cancer is no longer something that only happens to other people, that you do a run/walk to support, or that you eat well to try and avoid, it is a real to you in a way it never was before.

All that said, I do realize how lucky I am.  I have no idea how long that cancer was growing but it was big enough to be felt by a Dr.’s touch to my neck.  I had no identifiable symptoms and would never have known it was there if not for that body scan and a really smart doctor who looked twice at a little blip.  That could have kept growing until it became a much bigger problem.  Of course, the timing was not ideal (being sandwiched in between two other major surgeries,) but I was happy to get that thing out of me as soon as possible so that I could move forward.

I have often felt that I need to do something to acknowledge that I survived, to celebrate that I am doing so well and to mourn the loss of my thyroid who treated me well for 33 years.  So today at 3pm Central time I am getting my hair chopped off and donating it to Pantene’s Beautiful Lengths which makes wigs for women who have lost their hair due to cancer treatment.  So keep an eye out for tomorrow’s post with before and after pics!