Good News

The tumor is benign.

I just got off the phone with the nurse, and the tumor is a fibroadenoma, as we had hoped. At this point, we just have to monitor it closely and see if it grows over time. I will have an ultrasound again in 6 months, and if anything changes, we may need to consider removing it. But for now, it's nothing to worry about.

It was a long, long day (after a long, long month), and it feels so good now to take a deep breath and relax.

Thank you all for your prayers and support. I appreciate you so much.

All Is Well

For those of you thinking about me today, I just wanted to let you know that I had my biopsy this afternoon, and everything went smoothly. It was maybe not the most fun way to spend my day, but not that bad. Mostly, my shoulder, hips and back hurt from having to lay still in an awkward position for a while. Other than that, and a little soreness as the anesthetic is wearing off, I'm good. It's certainly a relief to be done with the procedure itself.

I should be getting a phone call between 12 and 4 tomorrow afternoon with the results of my biopsy. I'm feeling pretty confident the tumor will be benign, and at peace with the small chance that it's not. As long as I'm feeling ok, I'm hoping to go to Adoration and Mass tonight, which will make things even better.

Thank you all for your prayers, and special thanks to everyone who called, texted, or sent an email to let me know you were thinking about me today. It means a lot.

I'll let you know what I hear tomorrow!

A New Doctor, At Last!

As many of you know, I'm not a big fan of the rheumatologist I've been seeing for the past two years. I'm grateful that he was able to diagnose me right away, but beyond that, he's been pretty difficult for me to work with, and definitely not the person I want managing my care in the long term. But it's pretty hard to get a new patient appointment with a good rheumatologist, so it's taken me a while to get that figured out. Well, I finally got a recommendation for someone who was actually taking new patients with AS, and, after almost three months of waiting, I was finally able to have an appointment yesterday. Yay!

I'm happy to report that my new doctor was wonderful. When I first checked in at the front desk, the receptionist saw that I was a new patient, and she said "You must have waited for a long time for this appointment! Don't worry, she's definitely worth it." I thought that was a really good sign. :) Anyway, I think I had more honest conversation in this one appointment than I had in two years of appointments at my previous doctor. She actually listened and asked good questions and acted like she cared. 

It was a great appointment, so I was trying to figure out why I walked away with mixed feelings. It took me a while, but I realized that I have still been holding on to some small hope that if I just found the right doctor, there would be some magic answer to my problems, some innovative treatment or new idea that would change everything. (Or maybe a new doctor would change my diagnosis, to something that had easier answers or more hope for relief.) Of course, I've done enough research on my own that I shouldn't have expected that, but I guess the idea was still sitting there in my subconscious. So, when the new doctor said "Yes, you definitely have ankylosing spondylitis," my heart sank a little. And when she went through her recommendations for treatment, they were pretty much identical to what I had been discussing with my previous doctor. Apparently, there was something in me that was hoping for something different. So, that must be why I felt slightly disappointed, even though the doctor was great. But I really am grateful to have found a good doctor that I feel confident working with over the long haul. What a blessing!

Anyway, I didn't get a lot of new information about my disease progression at this appointment. She did one test of spinal mobility that I have never had done before, which showed that I do have some decreased mobility in my lumbar spine, possibly indicating that some fusion is starting there, but really, she just seemed to trust my description of my symptoms as an indication of how things are progressing. She didn't think x-rays were necessary (damage often takes a long time to show up on x-rays anyway). Because of the way AS is affecting my life, and the new symptoms I'm experiencing (shoulder pain too? sure, why not? throw in a knee or two while you're at it!), she's recommending I try another immunosuppressant biologic - Enbrel this time. Maybe she just caught me on a day I was feeling particularly desperate and miserable, but I have decided to go ahead. So, I'm going to start the process of getting that all set up - TB testing, insurance approval, specialty pharmacy set up, injection training, etc. Who knows how long that will take, but I will hopefully be starting Enbrel sometime in the next month or so, and back in to my doctor soon after to check in.

(Of course, this is all assuming that everything is ok with my biopsy next week. Obviously, things could change a lot based on those results, but there's no use worrying about that yet.)

Thank you to all who encouraged me to find a new doctor and to Beth for pointing me in the right direction. I think this is going to make my life a lot better in the coming months and years! :)

Be Not Afraid

In one of the Moms Groups I lead, we are reading a really really great book called Searching for and Maintaining Peace: A Small Treatise on Peace of Heart by Father Jacques Philippe. It's seriously one of the most helpful spiritual books I have ever read, and so much of what he says resonates with me. I can honestly say it has changed my life (or rather, God has used this book to change my life), and I would highly recommend it to anyone interested in a new way of looking at their interior life.

In one section of this book, Father Philippe is outlining some of the things that cause us to lose our peace, and he spends quite a bit of time on the ways that fear can interfere with having true peace. Reading this section, I had a sudden, almost jarring revelation - I am not afraid.

I had never really thought about myself through this lens before, but I realized that I've spent most of my life afraid. Afraid of failing, afraid of losing people and things I care about, afraid of being laughed at or disliked, afraid of losing control. And don't even get me started on my nearly pathological fear of making all sorts of ordinary mistakes. (I've always thought it was a sign of some deep-rooted psychological issues that 11 years of graduation I still have nightmares about messing up college exams.) I certainly remember, when I was first diagnosed with AS, how much fear was a part of my life. I was so afraid of what might happen, of what I might lose along the way.

I don't remember really working on overcoming these fears, but somehow, along this journey, they've just faded away. And not just the health-related ones, but the others as well. I suppose more prayer and a conscious decision to trust God are probably at the core of it, but it's odd to think that this just happened, when I wasn't looking.  For thirteen years of marriage, I have had terrifying thoughts of Mike dying in a car accident or something (especially when he's late coming home from work). But now, even during this season of life when I am more dependent upon him than ever before, I can think of losing him without panic setting in. I know that, no matter what, I would be ok. I love my job, which has led to fear that somehow it won't last. But now, I am able to be grateful for the gift that I have with this position, while trusting that whatever happens in the long term, it will be for the best. And I'm learning to trust that whatever happens with my health, it will be ok. Really.

(Don't get me wrong here - I still struggle with all sorts of nasty negative stuff in my heart. It's just that fear is not as big a factor anymore. Small victories!)

Anyway, it's interesting that I just came to this realization last month, because right now it's certainly being put to the test. Today, I went in for a mammogram to check on a lump I recently found in my breast. The mammogram wasn't conclusive, so they also did an ultrasound. The quick version is this: the lump is, in fact, a tumor of some kind, although it's more likely that it's a benign fibroadenoma than cancer. I have to have a biopsy next Wednesday (11/19) to check. (Has anyone reading this blog had one? I'd love to chat about what to expect.) I will get the results of the biopsy the next day.  So, this was not the "don't worry, it's nothing" result that I had hoped for, but it's probably still nothing. Unfortunately, I have to wait another nine days to find out.

What's weird is, I had an appointment with my doctor over two weeks ago, so I've been thinking about this for a while, and strangely, fear doesn't seem to be part of the equation for me in a big way. This lack of fear might be normal for other, level-headed, not-over-emotional people, but for me - well, this kind of thing would usually send me into a spiral of anxiety, stomach aches, and worst case scenarios. Instead, I feel pretty peaceful about the whole thing and I wasn't even really thinking about it that much. (Well, until about an hour before my appointment when I started to freak out a bit. But still.) The news today wasn't bad, but it also wasn't good. Still, I really don't find myself afraid. I don't like the uncertainty - if it's cancer, I would rather just know right away and get on with it - but I'm not afraid of the outcome.

I suppose I'm happy about this shift in my emotional life, but mostly it just feels strange. Like I'm looking at myself from the outside, asking "Really? You're not freaked out by this? Are you sure?" I can't imagine that fear won't be slipping in now and then over the next 9 days, and more so if the news is bad, but for now, I'll take it.


Do not fear: I am with you. Do not be anxious: I am your God. I will strengthen you, I will help you, I will uphold you with my victorious right hand. - Isaiah 41:10