Thursday, August 13, 2015

When Life Doesn't Go According to Plan

On Monday and Tuesday, I spent about two hours in the hospital getting checked for cancer by having a chest ultrasound and a CT scan.

If you had asked me ten years ago what my life plans were at almost 29, I never would have thought the above sentence would even be in the realm of possibility.

But here we are.

As many of you know, I had a meeting with a dermatological specialist last week, my first since getting diagnosed with an autoimmune disease over a month ago. In the most impressively long doctor's visit of my life (the whole appointment lasting over an hour and a half (!)), I got a lot of questions answered, a bit of unpleasant news, and The Plan From Hereon Out. And, to be on the safe side, the specialist ordered a whole bunch of tests to make sure that my condition wasn't associated with anything malignant  (aka, cancer), hence the reason for all the testing earlier this week.

Good news first---although I have one more cancer screening next week, the two I did this week came back all clear.

*insert audible sigh of relief*

The nice thing about tests like that is that they give some pretty clear results---you either have something, or you don't. There's a red flag, or there isn't.

Unfortunately, the clear answers pretty much stopped at the cancer screenings.

While the specialist confirmed that yes, I do indeed have dermatomyositis (and also confirmed that I must be pretty special, considering that only 7 people out of every million have the disease), he couldn't give me many more clear-cut answers, so we are officially in the "let's ride this out and try a bunch of different things" stage of this little experiment known as Improving My Health.

This is where the not-so-good news started.

Because corticosteroids (which I've currently been on for over a month) usually produce more and more toxic side effects the longer you use them alone, the doctor also prescribed me methotrexate, which is an incredibly strong drug used to treat cancer and other such diseases. Basically, the methotrexate is supposed to act as an agent to mitigate some of the toxic side effects of the corticosteroids, and the specialist is hopeful that with both medications together, I should start seeing more improvement than I'm currently seeing on the steroids alone.

Unfortunately, the introduction of this new drug means I can no longer breastfeed. (It also means that I'll likely experience some pretty intense fatigue, nausea, possible vomiting, etc. once I start taking it, but I'm not worried about all that...yet.)

I have had a surprisingly emotional reaction to this news--I guess I didn't realize how much breastfeeding had always been part of The Plan until it was no longer an option. In fact, the first couple times I nursed Raven since getting the news, I even cried a little (HIGHLY unusual for me).

The whole thing just didn't seem right---nursing has been going so good for us! Raven has been developing and growing like a champ! Her nourishment and good health was seemingly the one thing I haven't had to worry about over the last several months! The cost of formula!!

I'll be honest, my emotions have been all over the map about it.

At first, I did what I usually do to try and handle bad news---I immediately made myself think of all the positive things associated with it that I could (I was going back to work anyway! The steroids have been affecting my milk supply a little anyway! This way Matt can help with the feeding a lot more! I won't have to worry about pumping at the school!).

And then reality set in---I had approximately 3 weeks to wean Raven before starting the medication, and let's just say, it has not been going well, and it has become painfully clear that Raven is not ready to be weaned (and nor am I).

But this is the path leading forward that holds the most promise for my health, and it's the path I need to take.

I just really, really don't want to.

And that's got me thinking a lot over the past week, about how my life has gone laughably off-course from The Plan the last two years or so. I mean sure, my life hasn't gone as planned before (whose hasn't?), but it seemed like eventually, things always got back to the course I'd set for myself. Take my mission, for example---I originally had wanted to go at age 21, but got a strong impression at that time that I shouldn't go. I thought the impression was permanent and had basically given up my dreams to go on a mission when, lo and behold, I get a strong impression a year later that I SHOULD, in fact, go on a mission, and that the timing was finally right to head out.

Or, for another example, there was the time when I changed my major---I originally wanted to double major in both English and Math, mostly because a guidance counselor back in high school had told me that "English teachers are a dime a dozen" and that I'd "never find a job with an English degree." Two years into college, I dropped the math major and adopted a Psychology minor, which had always been my original desire. And guess what? I found a job without any trouble whatsoever doing exactly what I loved doing.

So, even though things haven't always worked out exactly according to plan, they still had eventually worked out so that I got what I wanted.

I guess God thought I was ready to be challenged in a new way because the past two years have not gone too much according to plan at all, and we've had to totally change The Life Plan to accommodate.

You see, had all gone according to The Plan, Matt would have gotten into physical therapy school and would currently be about two-thirds of the way through his degree. I would be in excellent health, back to running regularly again in spite of having had a baby recently. And Raven would be blissfully breastfeeding until at least a year old, possibly longer. I would probably not be planning a return to teaching. We would probably be out of state somewhere, having some crazy adventures.

But life has a funny way of not going according to our plans, so instead of all the above happening, Matt currently has no plans to try applying to PT school again (since we dropped a few grand to apply the past two years with no success), is about to quit one of his two part-time jobs to stay home with Raven until the early afternoon (at which point she'll be taken to a friend's for a few hours until I get home), and I'm heading back for my fourth year of teaching in about two weeks.

To make a long story a little shorter, I've had a lot to think about over the past little while.

Right after I told her about the breastfeeding ban, my mom made a comment like, "I'm just so sorry. You're trying so hard to do everything right, and it just doesn't seem fair. I'm sorry."

I've thought a lot about that over the past week. Of course, in our justice-seeking minds, a perfect world would mean that we were rewarded every time we were good, and punished every time we weren't so good.

But life doesn't work like that, nor should it----after all, where would the growth be if you knew that you'd always be blessed for doing what you know to be right, and punished when you didn't? In such a world, you'd hardly need faith---you would just be like Pavlov's dogs, conditioned by reward and punishment into producing certain behaviors.

Growth doesn't work like that. Growth happens when our expectations are frustrated and we are forced to find a new way forward. And faith grows most not when it is given a sign, but when it is tested and then proven after a period of waiting and trial.

This I know.

So, in short, I'm not happy about the fact that as of the end of this month, my daughter will no longer be nursing, and that I'll lose that precious bonding time with her (not to mention all the other benefits of breastfeeding that both she and I will be missing out on).

But I do know that eventually, "all things shall work together for [my] good."

And that will have to be enough for now.


  1. Reading this really hit something in me. Man, it takes me back to all the uncertainty and the changes that come with an autoimmune disease. Maybe all of it is scary, but especially the beginning. The whole adjustment to living way differently. With time, I've come to make better peace with it and see it as a teacher but it's hard sometimes too. I think you have such a great attitude without being in denial or overly positive about it. You're right -- it is disappointing and kind of sucky. But I think you're also right about growth and lessons and plans working out differently than we imagined -- but maybe coming together for something bigger that we just don't understand yet. I do think living with autoimmune disease is about faith, trust, and self-care. It's a daily reminder of the importance of those things. Also just priorities in general. Thanks so much for continuing to share your journey. :)

  2. I'm sorry for the difficulties you've been facing lately and will likely continue to face. I appreciate your honesty about the negative aspects as well as the positives. I think you're right-we've all had our lives veer off course a bit (7 years after graduating with a degree I didn't really plan to use, I'm now working toward getting a masters in a completely different field). You mentioned that it's always seemed to right itself, and while this may not right itself in the way that you hope or plan for, the growth in faith and strength may be enough. I love how God has given many examples in His Word of men and women who grew as a result of the testing of their faith. I also love the comforting words He gives us that we can do the same. James 1:2-4 is one of the great passages about it: "Consider it all joy, my brethren when (note that it says 'when,' not 'if') you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing." It's easy for me to say that from my position, but I'll pray that you continue to have faith and strength as you are tested right now.

    1. Thanks, Ash! I've always loved that scripture, and it was a good reminder to see it today. And good luck with that masters degree! It's something that I hope to pursue someday as well. What did you originally graduate in? And what are you getting your masters in?

    2. My bachelors was in social work, and my masters will be in speech-language pathology. I knew before I even finished my bachelors that it wasn't the right degree for me, but it felt too late to turn back, and I still felt clueless about what I actually wanted to do! I feel much more confident about my masters!

  3. Oh friend I am praying for you always. I wish there was something I could do to help. I love what you said about how we are not just rewarded for being good and that nothing bad will happen to us. It can be so hard when you try to do everything right and it feels like you aren't getting anywhere! I have really had to embrace that idea. But I do know that even if our plan is not working out how we wanted, if we do what is right we will have what we need in one way or another. You are amazing and I am so impressed by you! Keep the updates coming.

  4. I feel for you so much torrie! I feel like you're my little sickie buddy when I read your posts or your comments on my blog. It can be so frustrating to have something taken away from you all in the name of trying to get healthy. I'm so sorry that you won't be able to breastfeed anymore, that just sucks. You can still hold her a night in the same position and give her a bottle instead of a boob. Bottle feeding can be so easy and almost an after thought, or it can be a special feeding time as well. I totally understand and feel like my life the past 3 years has gone nothing like I planned, sometimes for amazing results and sometimes for really frustrating results that I don't understand the reason for. I really hope your new medicine helps you feel better abd you can get this thing under control asap.

  5. i've been thinking about you, thinking i should text and see how things have been going since your appt. i know this is silly, but i'm here on the other end of having pumped at work for months and months, and i'm thinking 'lucky! she won't have to worry about pumping at work!' haha. sorry. i know that's probably not helping right now, but finding time and the hassle of pumping at work is no glamorous, fun thing. still, being able to supply your little one with all the nourishment she needs right now is an amazing thing! and i'm sorry you're being forced to quit! but babies are just as happy and healthy on formula too. although the price tag isn't fun (gracie had formula for about 2.5 months before switching to regular milk). no cancer thus far is GREAT news torrie! we're going through a bit of a not-what-we-planned-for-our-lives phase right now too, it's not easy. i like what kayla said too - we will have what we NEED in one way or another. i guess living out of state with matt finishing school and you not working isn't what you guys need right now. think if you were out of state, dealing with these health issues/scares by yourself with no other family/friend support right by your side? that sounds scary too. keep me updated.

  6. I'm sorry that you are dealing with so much! Sometimes it's hard to trust in God's plan for us! Weaning is never fun, especially when you're not ready for it. I'm sure it will be nice to have some help with feedings, though. My oldest daughter wouldn't take a bottle until seven months and sometimes I would have really liked a little break. I can completely relate to your situation with your husband. My husband applied to medical school for the past two years and we just decided that we wouldn't try again. It's so hard to accept that it just isn't going to happen and to find a new plan. Good luck with everything! I'll keep you in my prayers :)

    Sierra Elizabeth

    1. Bummer! Hopefully he's found something else that he's interested in to pursue! And it will be nice to be able to have other people feed her (a necessity, really, considering that I'm going back to work in a few weeks). Seven months, huh? That's a LONG time to not be able to miss a single feeding! Thanks for stopping by my blog :)


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