There are days when I look at the world, and see a place that has gone totally off the rails. A place where the blatant discrimination and racism and cruelty that we see every day makes me want to scream. To give up. To weep for the future that will be left to my children. To think that I can’t possibly make a difference when everything around me seems so broken.
When I wrote Survivor, I thought I was prepared for anything. I felt confident enough in who I am that I believed I could handle any criticism that came my way. What I did not expect though, was the overwhelming kindness with which I was met. So many people, some of whom I hardly know, wrote, or messaged, or texted, or emailed, or commented about my post with words of encouragement, and solidarity, and support. I had multiple women privately share with me that they too are rape survivors who had kept it to themselves for far too long. I had friends and relatives I have not spoken to in years reach out to me to compliment my bravery and show me love. And I did not have any negativity directed towards me. None.
And that was truly a blessing for the scared little girl inside me who wrote those brave words but still worried about what people would think. If I would be forever changed in the eyes of those who knew my secret. I wish I could share the hundreds of messages of support that I received with every rape survivor who is afraid to tell her story or who feels alone. That secret held a remarkable amount of power over me, and now that I am not clinging so tightly to it, trying to keep it in and stuff it down, I can actually let it go.
I feel so unbelievably free. Light and joyful and full of hope. And I feel this way in spite of the fact that this has been a tough week.
A few days ago I was sitting in the ICU waiting room with my mother waiting for my dad to get out of an emergency appendectomy. He is doing great now, but at the time I was getting a little nervous because his surgery was taking much longer than the doctor said that it was going to. Then we started flipping channels and Shawshank Redemption came on – this is the new Walnut Hill Medical Center place and there are flat screens everywhere and the biggest hospital rooms I have ever seen. I seriously had hospital room envy that my dad had a palace for his few hours there and I had to spend twelve days in a drab shoebox, but I digress…
So it was the part where Andy says, “Hope is a good thing, maybe the best of things, and no good thing ever dies.” And I was reminded just how incredibly important hope is. I realized that the greatest gift I have ever been given is resiliency of spirit. After everything I have been through I still have hope.
Thank you to everyone who helped me re-affirm my faith in humanity this week by going out of your way to reach out to me and offer a kind word or a message of support, or a hug. I know a lot of you are going through your own struggles, so tonight I spent a few moments in meditation and prayer for those I know who are having a tough time right now.
I have this little candle that I bought as part of a youth fundraiser at my church; it is a tea light covered in tissue paper with the word “Hope” written on it and I lit it for the first time tonight.
I wish for you that when everything is at it’s worst you can see the glimmer of that tiny scrappy little candle- held together with Elmer’s glue and tissue paper. It may not be much, but just a little bit can change everything. Hope.
I am a Survivor. I have learned this about myself the hard way. I have been put through more in my 36 years than many people experience in a lifetime.
And I am so angry right now. Furious and frustrated that we live in a world where the first assumption about a woman who comes forward as having lived through sexual assault or abuse is that she is a liar or somehow “deserved it.” Now I will admit I’m not very hip to pop culture, but I like the song where Kesha sings about brushing her teeth with a bottle of Jack-I can get behind that. What I can’t get behind is a judge that rules that she is legally bound to work for the company of her rapist.
I don’t know all the details of the case, but I do know that coming forward as a victim of rape is difficult, and brave, and terrifying. And instead of surrounding these women with love and support we punish and doubt them. I felt this way when the Cosby allegations were surfacing and there were so many hateful comments about how no woman who was raped would wait 10 years to confront her rapist-so she must be lying, or trying to get money, or a whore.
I stayed quiet then because I was scared for myself, for people judging me. But now Kesha is being tormented in the same way so very publicly, and I have discovered my hidden super-power of not caring what people think of me, so here goes:
I love/hate therapy. Because part of the goal is to continually look at your life and assess it and figure out the ways to break some of your self-destructive patterns and bad habits. And that can be hard. Really hard.
I am in an upswing in my life; my health is finally stable, my energy is back to about what it should be for someone who runs around with 4-year old twins, my family is healthy and happy, and I have a good marriage to a man who can be a pain in the ass but is also my best friend and the best choice I could have ever made for a life partner. And yet I still have so much I have to work through, so much hurt that I never dealt with that comes back to the surface when I am overwhelmed.
I have an analogy I like to use about all of my past traumas being like little (or giant) boxes stuffed on a shelf. One of my well-developed coping mechanisms is the ability to put things that happen to me into a little box, seal it up tight, and stick it on the shelf. This works great until that shelf gets over-crowded and trying to put one more box up there causes everything to topple down on me. That is how I ended up in a place that I was having panic attacks and severe depression.
Now that I am feeling good, I am trying to take down and unpack those boxes one at a time so that the next time something happens (which it will, life is never perfect) I have the room to cope with it.
That being said, I really hate unpacking those boxes. It is difficult, and painful, and I generally just don’t wanna. And I am unpacking a big box right now. One of the biggest on my shelf and the only one I have sealed up so tight that I have almost never spoken of it. Which is saying something because I am a major over-sharer.
I have used this blog in the past to be honest in a way that I just can’t be other places, and I feel the need to do that again.
I am a Survivor. I am a Cancer Survivor. I am an Eating-Disorder Survivor. I am a Depression and Anxiety Survivor. I am a Miscarriage Survivor. And I am a Rape Survivor.
That last one was a bitch to write. Because admitting that is really f-ing hard. It was a very long time ago and I am not going to share the details of my rape other than that it happened. There was no knife and no gun, but my rapist (only now can I call him that out loud) had sex with me without my consent. That is rape. I was raped.
If I am using that word a lot it is because it is totally foreign to me. I pushed it so far back onto my shelf that I did not tell anyone for more than 5 years. Five years. Before I told anyone. And to this day I have only told one friend and my husband what happened to me (and now the entire world who has any interest in reading my blog!)
I can’t give a real answer yet as to why I didn’t tell anyone. I know that I was ashamed. And that I felt it was my fault. And that on some level I knew that if I told anyone they would encourage me to report it, which terrified me. Because what if no one believed me? What if I went to trial and they used the short skirt I was wearing as evidence against me? What if I went through having to relive my rape over and over and over again only to find no justice at all? To have people taunt me and accuse me of lying? To have to hear someone say out loud the things I said to myself, that I shouldn’t have put myself in a vulnerable situation, that I shouldn’t have had so much to drink.
I was young and I was not nearly as brave as I am now and so I chose to shove it down and pretend it never happened. But it did happen. And I am a grown woman now. And I am stronger than I ever believed possible. So I finally have the courage to say it. I was raped.
This is obviously extremely personal, so why talk about it in such a public way? First of all, because I now know that I have nothing to be ashamed of. I did not do anything to deserve what happened to me, and if the person who raped me had any strength of character at all he would not had sex with an unconscious woman. I am “lucky” enough that I do have memories of telling him no and trying to push him off of me before the blackness came over me again. But I want to make this very clear to everyone reading this. Even if I had not woken up enough to try to make my rapist stop, it still would have been rape.
And it was not my fault. I did drink a lot, and I now wonder if I wasn’t drugged, but the truth is it doesn’t matter. Drugged or not, drunk or not. I was raped and no part of that is my fault. It is not a reflection of me or who I am. And if people comment with any sort of nastiness in response to this post, then that has nothing to do with me, they need to find their own therapist and unpack their own boxes.
But the main reason I felt compelled to write this is because I was at my therapist today and she asked me if I knew any other women who had been through something similar that I could talk to, and I said no. And then I thought about the statistics, some of which say that close to 1 in 3 women have been raped or sexually violated. So I must know people this has happened to. People just like me who feel scared and damaged and alone.
But you aren’t alone. Maybe you are in the crisis period of dealing with your rape immediately after it happened, or maybe, like me, you are coming to terms with it a lifetime later.
So this is for you. For Kesha, and for anyone who has been raped or brutalized. And this is for me. By giving a name to what happened to me and coming forward with it so publicly I am declaring that I am not ashamed. I am not embarrassed. I was raped and I should feel no more shame in saying that than saying that I had a miscarriage. Both are private and something I don’t want to talk about every day, but neither was my fault. Secrets have power, and this secret has had power over me for far too long. Not anymore.
I am a rape survivor. And I am working on all the crap that goes with that. But I am proud to say the rape doesn’t define me. Survivor does.
This year I am giving up self-criticism for Lent. I mean, it can’t be caffeine, wine is obviously out of the question, and my Jamberry addiction is really just in it’s infancy, so I have to find something…
I thought maybe I could use this season as a jump start to a new mental space where I give myself a bit of a break. In my last post I wrote about how I don’t care what other people think of me anymore, and that’s true. But I am still pretty harsh in what I think of myself.
I hold myself to ridiculous standards. Clearly not when it comes to keeping my house clean or washing my hair more than once a week. But I ruthlessly criticize myself for not being able to truly appreciate every moment with my kids while they are little and adorable, I mean I should be grateful that I am alive to be a part of their childhoods and frustrated at myself when I don’t feel that loving glow every second of the day. I project forward to when they are pain-in-the ass teenagers and I have turned into Beverly Goldberg and am clinging to them demanding “snuggies” and that I will regret that I didn’t cherish this time more. And if I slip and snap at one of the kids when I have asked them the same f-ing question 37 times and they still refuse to answer me, or if I yell “I don’t care, just figure it out” through the bathroom door while two three year olds are screaming that they need me, I beat myself up pretty badly about that later.
And it’s funny because my absolute favorite about being a Christian (yes, I’m out of the closet now, I love me some Jesus) is the concept of Grace. That you do nothing to earn it and there is no way to loose it. That is some pretty amazing stuff. Haha Amazing Grace, I totally wrote that not intending the pun but I’m gonna leave it here anyway.
And I am really good, like really good, at giving Grace. I don’t just give second or third, but 27th chances. I am able to look at someone who is being a total asshole and give him the benefit of the doubt that maybe his dog just died or he has some chronic pain that is not visible to the eye but eating away at his patience. Because I have been there, I have been someone who fell to pieces when my husband asked me to make a reservation because “it was all just too much!!!!” So I am very generous in my ability to forgive.
Except when it comes to me. I hold grudges against myself for things I did in the third grade. I’m not kidding. I obsess over the hurtful comments I made years ago that the person I hurt probably doesn’t even remember. These are things that I would easily forgive in another person, but refuse to do so for myself.
So that’s what I’m giving up this Lent. I am giving up (or going to try to give up) judging myself so harshly. I mean, I’m pretty great. I made it through the past four years when life kept dealing me blow after blow. And I survived. And I thrived. I still have hope, and optimism, and more faith than I ever did. And grace. So I am going to start using a little bit of that on myself.
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.”
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!
I just want to take a quick moment to say I am truly astounded by the outpouring of support I have gotten since my last blog post about starting Mommies In Need. In a little over a week, we have more than doubled our original goal for helping Annie and her family!!!
I was not sure if I could really do this thing, or if I was just being an (even more) insane person. But you guys are backing me up and giving me the courage to keep going. The amount of people who have shared the link, donated, or offered to help in some other way is incredible. I think it has spoken to a real need in society. I have heard over and over again when I explain the idea to people, “I never really thought about it, but I don’t know what my family would do if I got that sick.” Mommies In Need is growing at the rate that it is because it offers a tangible and relatable service to people who are in an unthinkable situation.
So just to keep you in the loop here are just a few things that have actually happened in the last week:
We have the beginnings of the 501(c)(3) paperwork done. This is an extremely tedious process but I am hoping to have at the very least the articles of incorporation submitted to the state by tomorrow. Once that goes through, I can get the rest of the forms to the IRS in the next few weeks.
We have a Secretary and Treasurer for the Board. We will be having board meetings and voting on measures and all sorts of official stuff!
We have a Mommies In Need bank account where all of your incredibly generous donations are going. And by bank account, I mean real bank account, not a bag with a dollar sign on it under a loose floorboard.
We now have a PO Box. Send us something! I recommend a check made out to Mommies In Need, but you could also send Annie a letter or card of encouragement, a sonnet you write about how generally awesome I am, or whatever else you feel inspired to pass along. Our new address is: Mommies In Need, PO Box 601562 Dallas, Tx 75360.
And most importantly, we have raised enough money to fund a Nannie for Annie (sounds like a Dr. Seuss book) for over 2 months!!! I am amazed and overwhelmed by the generosity and enthusiasm that everyone has shown.
So please continue to donate or have people send checks to our new address. You can also send me an email at firstname.lastname@example.org if there is some other way you want to get involved or just want to be on the mailing list for any and all Mommies In Need info.
I am so excited that we are able to help Annie and hopefully many more mommies like her in the future. Thank you to all of you for listening, supporting, and sharing! And for jumping on board this crazy train with me!
I have said on this blog before that I no longer believe that everything happens for a reason. Some of you may have heard me articulate this as “I don’t believe that God gives us the bad stuff.” I just can’t wrap my head around a world where the difficult path that I have been down was chosen for me, that I have suffered so much because I am uniquely strong enough to bear it. I think we have a lot more choice than that, and sometimes shit just happens. And it’s not fair, and it’s not because I deserved it, or because I needed it to grow as a person. I am just someone who for a long time couldn’t catch a break. And I went through a long string of crazy health problems and am just now coming out the other side of it.
What I do believe is that people who are dealt a rough hand have the option to bet on it anyway. We don’t always have the ability to change the circumstances that come into our lives, but we can choose to keep going, to get out of bed every day (or most days) and hope for the best. And if we are lucky, we can find a way to turn those things into something great. And sometimes God, or The Universe, or Completely Random Chance (whatever you want to name it that makes sense to you) lets things line up in a way that all that crap makes sense and has a purpose and can be turned into something beautiful.
This is more philosophical than I usually get here, but I need to explain to everyone why all of the sudden I have become (even more of) a crazy person and decided to take on a huge project when I am not quite fully functional myself. I started a charity. Like yesterday. With no real plan in place, just flying by the seat of my yoga pants and praying that it turns out ok.
I have actually been thinking about starting this since I first got sick. Because I always knew how fortunate I was that with the help of our families we could afford to hire a nanny to get me through the worst of it. And I found Wonder J– as I have written before she has been amazing for our family. I always knew that I could focus on taking care of myself and be there for my girls as much as possible, but have confidence that if I hit a wall and had to go lay down, or got dizzy, or was about to poop my pants (sorry for the TMI but we are talking colon removal here!) Flopsy and Curly were in good hands. I can’t even begin to describe how much I needed this help, I am not exaggerating when I say I am not sure I could have gotten through the last few years without a nanny. Cause stay at home mommies don’t get sick days. Ever. Not if you have a cold and not if you have cancer.
Stay at home mommies of young kids don’t have disability insurance and most of us don’t have any sort of childcare set up. Maybe a MDO or a couple of hours of babysitting here and there. Not enough to go to seven doctor’s appointments a week. Or be in the hospital for 20 days in a year. Or go through invasive treatments and surgeries that leave you feeling like warmed-up death. And if you can’t afford to hire help than at best you have tons of different people volunteering a few hours here and there, having to explain your kids schedule to every person that helps you, feeling guilty that there is no consistency in the kids lives, and at worst have to miss vital appointments or treatments because you can’t find someone to watch your kid with strep. Who, by the way, you shouldn’t even be near because you have a severely compromised immune system. Not a great situation, huh?
So when I heard that my friend Annie (who has two darling kids and not-so-cute colon cancer) was back in the hospital following surgical complications, and did not have and could not afford full time help to get her through the rest of her surgeries and chemo, I knew I HAD to do something. See, a few years ago, I would have heard her story and thought, “Aww that sucks, she’s so nice, this is going to be really hard for her.” But now I hear that story and say “NO!!! You can’t do this by yourself, if you can’t get help then I will get it for you.” And then the real miracle happened. Our previous nanny (who left only because she got a full time job, we loved her) texted me and said she was looking for a new family. And I thought, “Hello, all I have to do is put these two together, raise a bunch of money, and I’m off.” So Mommies In Need was born.
But can’t I just raise money for another charity that does this? Nope. If there is one, I couldn’t find it. And my vision is very specific. I want to not only fund the nannies for sick moms, but also provide them with someone who is vetted, background checked, and stamped with the SuperCrazy Mommy seal of approval (as in I have/would leave my own kids with them.) Because when you are in pain is not the time to have to do interviews and reference checks and try to find the right person. My long term goal is that if I get a call for a mommy who just got a diagnosis I can move fast and have a reliable nanny to her in a few days.
I know that there is a daunting amount of work ahead of me, I just opened the new bank account and am starting all the 501(c)(3) paperwork, and I actually do have “Grand Plans” for the future. But already I am amazed at the people who have stepped forward and said they think this is important and want to be a part of it. I am feeling grateful that everything came together at the right time for me to get off my ass and actually start this thing. So is it crazy? Yes. Is it Super Crazy? Yes! But I am doing this because I feel like I finally found the good that I can pull out of all the shit I have been through. This non-profit is my silver lining, my reason for all my difficulties. I actually have an answer now to the question that plagued me everytime I got hit with another diagnosis or huge crisis.
In Mommies In Need I found my “Why?”
*If this blog has ever spoken to you, or made you laugh, or given your day a little lift, please consider donating to MommiesInNeed. If you can’t donate, please check out the fundraising page and share it on any media platform you can. Plus as you will see on the campaign page, if you donate $100 or more I’ll Be Your Best Friend! You can also like me on Facebook for more updates on this project.
Today, a friend of mine is going in for surgery and it made me start to remember all of the things that I thought and worried about before each of my 5 major surgeries in the last couple of years (see A Brief Timeline of Crazy if you just went, “wait, WHAT?”) I can go on and on about how scary and difficult and painful surgery is (wouldn’t that be a fun blog to read?!) but I realized that no one really talks about the good parts of having misbehaving organs ripped out. So here it is…
The 5 BEST Things about having Major Surgery
The Binge Watching- TV shows and movies on Netflix, Amazon On Demand, Hulu, etc. were practically designed for someone in the hospital or in recovery. My suggestion is to pick a show that you have never seen before that is already 6 or 7 seasons in and then just marathon it. Personal favs include Pretty Little Liars and Gossip Girl but I am really sophisticated and cultured like that, you may be more of a West Wing person and that’s cool too. I wouldn’t recommend Lost though because with all the drugs in your system you will probably get really…well, I think you know where I’m going with that one! Which leads me to…
The Drugs- I have a bizarrely high tolerance to pain meds, but even I got to a point when I started professing my love for the nursing staff giving me the drugs. Apparently I kept telling my Dilaudid-wielding nurse, “I love you, do you know how wonderful you are?” This got a little awkward for my husband who was standing there, especially since it was a male nurse! If you are lucky you get a magic device- the pain pump (my favorite was filled with Dilaudid but Morphine is pretty good too.) Don’t be a hero, you don’t get any points for not pushing that button, use this liberally and enjoy.
The Love- Your friends and family will come out of the woodwork to shower you with cards, emails, texts, flowers, gifts, jewelry (ok, maybe not jewelry, but if you have a friend in surgery- please consider it. Nothing says “Get Better Soon” like a pair of diamond studs!)
The Help- Again, at no other time in your life will people be so ready and willing to help you. Everyone says, “Let me know what I can do.” Don’t make the mistake I did and just think that is an empty line. Most people that say this truly do want to help (and if they don’t- too bad, they offered, if they didn’t mean it that’s on them!) Seriously, let your loved ones know what they can do. Here’s a list of possibilities- grocery shopping, dishes, pick up dry cleaning, make you food, buy you food, watch your kids, do your laundry, bring you magazines, get your prescriptions, or just come over and keep you company for awhile when you can’t leave the house and are going stir crazy.
The Perspective- I think this is the biggest one. If you survived a major surgery (or many surgeries) you will probably come out of it a little different. You don’t know just how much you can live through until you go through it. The worst of the pain, the hospital stay, and the recovery feel like forever. But then one day, you wake up and realize that you are starting to get back to yourself again. You think, how in the world did I get through that?! And you start to understand that just maybe you are stronger than you ever gave yourself credit for. Maybe you have a little more appreciation for the good things in your life. Maybe you hold your loved ones a little tighter because you realize just how precious your life and health are. Maybe you will one day be able to give support and compassion to someone going through a tough time in a whole different way because you get what it is like to be really down. Maybe the whole process helps you realize just how many people love you and who your true friends are. And maybe, just maybe, you have some killer new bling to go with your new look on life.
If you are about to go into a major surgery right now or know someone who is, remember that even the hardest things in life eventually pass. Enjoy the downtime while you have it, I feel like I’m speaking in cliches here, but the world moves really fast most of the time. I don’t really believe that everything happens for a reason. But I do believe that things happen and you call on every bit of strength you have to deal with them, and that you can then choose to find something good that came out of it all.
I can’t say that I enjoyed any of my surgeries or sicknesses, but I can say that I truly appreciate all the love that people showered on me, the knowledge that I have more resilience than I ever dreamed of, and that I am overwhelmed in gratitude that I am alive, on the mend, and able to hold my husband and daughters every night. Oh and Gossip Girl, I really enjoyed getting to watch that show in a continuous marathon- when you are on drugs and don’t take a break between episodes it is even more crazytown!
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:
I am extremely grateful, I survived cancer without having to loose my hair to chemo.
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.
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.
It feels appropriate, like a new start. By changing my look I am celebrating the stronger person I have become.
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!
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!
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!
Did you know that September is Thyroid Cancer awareness month? No? Well neither did I and I am a survivor of it! It is not one of the more “popular” cancers to talk about but it affects a startling number of people.
So I want to do my little part to raise awareness about thyroid cancer by sharing my story. If you are interested in learning more about the types of thyroid cancer, signs and symptoms, treatment, support groups, etc, you can visit http://www.thyca.org/.
I have an unusual cancer story because I only found out that I actually had cancer after it was already gone. I realize just how lucky I am that I had a type of cancer that is usually pretty curable and we caught it relatively early, but the truth is- it still sucks.
When I was getting ready to have my colon removal surgery they did a body scan as part of my pre-op. Nobody mentioned anything strange to me but then I went to see my endocrinologist (for my osteoporosis- yes, I am 34 and have old people bones) and she said, “Hey, did anyone talk to you about this nodule on your thyroid?”
Um, nope. I’m just here discuss my bone density because of all the prednisone I was on for my Ulcerative Colitis. (By the way, if at any point you get confused about my host of bizarre medical problems, see A Brief Timeline of Crazy) So she felt my neck and said there was definitely a lump there and decided to do an ultrasound. The ultrasound was “suspicious” (was my thyroid nodule wearing a dark hoodie or something?) so she said it was potentially cancer and we needed to do a biopsy.
This is the point where I should tell you that this happened on a Friday and on Monday I was scheduled to go in to have my entire colon removed, knowing that I would be in the hospital for at least a week and would have to go back in to get a second surgery 3 months later! She said I could wait until after I was recovered from the surgery for the biopsy, and not to worry too much because even if it was cancer, thyroid cancer is one of the “best” kinds you can have.
I’m sorry what? There is a good kind of cancer? Look I understand that if you know you have cancer and are spinning a wheel to find out what kind it is you are probably hoping for something like thyroid that has a high cure rate rather than say pancreatic or ovarian. But cancer is still cancer and it is really f-ing scary, there is no best kind. I was lucky that my Wheel of Cancer landed on thyroid and it was caught in Stage 2 (before it spread), but I would much rather have been on a different game show all together… like American Super Ninja, I wish I were that cool!
But I digress, I managed to keep it together in her office and make it to my car before I had a complete mental breakdown. I was crying and shaking so much that I could not drive. I mean WTF, wasn’t I going through enough right now? No, the universe decided to go ahead and pile on some more to worry about.
So I let myself freak out for a few hours but then I had to put on my big girl yoga pants and suck it up, I was going into the hospital in a few days for major surgery and had to make sure everything was set up and ready for my kids and myself during my hospital stay and intense first few weeks of recovery.
When I was recovered enough I went in for that biopsy, waited an excrutiating 10 days for my results only to find out that they were “indeterminate.” So basically there was a 50/50 chance it was cancer but no more tests that could help narrow that down. Awesome! All the doctors agreed that it was too risky not to operate and remove the lump but I got to make the choice of removing my entire thyroid (which if it turned out not to be cancer would be taking out a perfectly good organ that I really kind of need) or just removing the half with the lump in it (but if it was cancer, I would have to have a second surgery to take out the rest.) Knowing that I would be having a minimum of 3 surgeries in 4 months at this point I made the choice to take the damn thing out and be done with it. I could not face the prospect of a fourth surgery.
In part 2 (soon to be blogged) I will talk about my recovery from the surgery, the discovery that I did in fact have cancer, and the complications I came across. But I just want to pause a moment and say here that thyroid cancer is a real cancer, that it can be serious and even deadly (the girl from The Fault in Our Stars had thyroid cancer) and that if you are having any issues that could be thyroid related (one of the biggest of which is fatigue,) please get them checked out.
I am praying for each of you that you never have to spin the Wheel of Cancer, but if you do, please know that it is ok to be angry and freaked, but that there is a ton of support out there for you. I hope this blog becomes just that. A place for inspiration, laughter, and comfort when things get rough. Don’t worry, I’ve got plenty more crazy where this comes from!