Wednesday, November 20, 2013

Wrong Roads

I've heard several Utahns say that this year has been one of the prettiest falls they've ever seen. I have to agree with them--I don't think I've ever seen so many brilliant colors lining the streets and dotting the valley. I've also discovered that there is something strangely satisfying about raking up all of those beautiful colors into manageable piles. In some ways, uncovering the still-green grass is like cleaning up a messy bedroom. Or maybe it's more like finding some order and sense when nothing else seems neat or tidy in my life.

Since I last wrote, things got tipped a bit upside down. Although the Huntsman Cancer Institute was amazing, we got a call from them a couple days after my visit to inform me that my out-of-pocket cost would be astronomical because they weren't part of my insurance network. Friends and family started donating funds almost immediately, but I just felt confused and unsure what to do next. That same week, we also met with a reproductive endocrinologist to discuss my chances of infertility post-treatment, and I was unexpectedly faced with two extremely difficult decisions that never would have crossed my mind: is it worth the money to receive the right treatment? And did I want to risk never having children? My first wave of optimism started to dwindle a bit, and everything began feeling terrifying and wrong and generally like everyone was talking about someone else that I'd never met.

Have you ever done something that seemed perfectly logical but that a very deep part of you just didn't feel right about? It's a disconcerting feeling and honestly makes me really grouchy. In a way, I feel like time stood still for weeks when all I wanted was to be quickly progressing forward and getting all of this behind me sooner. We spent so much time with doctors and exploring treatment options that I began to feel like I had a new part-time job. Frustratingly, though, we couldn't seem to get things to match up with the right treatment at the right price. So, as we explored care options, Roby and I decided to head down the path of embryo preservation, even though we were unsure it was the right decision. We also tried to keep things light by taking advantage of the beautiful fall--raking leaves regularly, having photo shoots with my sister, getting my bridal pictures done before I lose my hair.

Waiting, though, was terrible. My type of cancer, HER2 positive, just so happens to be the kind that grows like a wild thing and has a hankering to spread everywhere. Every time I had a slight pain in my leg or back or stomach, I'd panic and wonder if that meant the cancer had spread. Being a tense person, headaches aren't an unusual thing for me, but suddenly even the smallest twinge in my temples had me thinking of the horrors of brain cancer and Gamma Knife therapy. (Yeah...I've done a lot of reading and research...) I remember telling Roby one night that I felt like by waiting and undergoing the long-ish process to save embryos, I would be choosing between the possibility of metastasis with its lifelong problems and not having children. No one should have to choose between death and creation. And while I recognize that that's being a bit dramatic, I felt pretty awful.

Fortunately, after many prayers and fasts from more people than I ever believed possible, things started to come together last week. Following some failed doctor visits, we were leaning towards switching back to Huntsman and dealing with the cost. We had also received a packet of hormone shots to begin prepping my body for an egg harvest. But I still felt like something was off. On Monday night of last week, Roby and I watched this video clip by one of my favorite LDS leaders and speakers, Elder Jeffrey R. Holland. As he talked about right and wrong roads and the confusion of finding the best path, I realized we were on the wrong road--a couple of them, to be precise. It was hard to let go when I felt like so much was riding on these decisions, but I turned to Roby and tearfully told him that I felt we needed to change directions. He had felt the same thing. After watching that movie and coming to that conclusion, everything felt better, and the pieces began to fall into place.

We had found a doctor that we really loved who wouldn't cost a fortune, but she hadn't prescribed the chemotherapy that we felt good about. We visited with her again last Wednesday in hopes she'd change her mind, and the first thing she said when she walked in to see us is that she had reconsidered. After researching the new treatment I wanted (it's only been available for about a year), she felt it would be both good and right for me. She also confirmed that my chances of infertility were not as high as we were originally told, and she felt that owing to my younger age, we would be fine as long as we were careful. I immediately felt like there was nothing left to do but schedule my first chemotherapy for a week later--that day being today.

So here we are--D-day, as it were. Part of me is relieved to finally get on the path to recovery, because even though a scan last Friday confirmed that there isn't a wild cancer-spreading party going on inside of me, the tumor is still a nasty little beast that is starting to cause increasing pain and discomfort in its localized area. But the other part of me is very frightened. I still have so many questions and unknowns: will I feel nauseated? What's it like to be too tired to walk up a flight of stairs? Will it get that bad? How will I feel when I have to look at myself in the mirror? Is it bad to want to avoid seeing myself without hair? I can't be brave all the time--there is still a little girl inside of me who has never before been sick with more than a cold or stomach flu, never been hospitalized, never even broken a bone or had stitches (until two weeks ago when they put in my chemo port). And now, here I am, scheduling the days when I'll feel horribly sick and lose the hair that has been a significant part of my life and identity for 29 years. There have been many times when I've lain my head on Roby's chest and
cried until I couldn't cry anymore. I'm intensely grateful that he's an emotional and psychological counselor (as in literally--it's his chosen profession).

I know that this is a challenge that God wants me to take on with faith. I also still know that He is in charge and is guiding all of our steps and even missteps. Of course, that doesn't mean that things will always be sunny and cheerful and awesome. It just means that we are embarking on an incredible journey that will teach us many crucial life lessons. Friends, I'd like to invite you all to come along on this journey with me and Roby. I can't promise to post everything, and I don't know how often I'll feel up to posting. But I do know that having your support along the way will make everything feel better.

5 comments:

  1. With you all the way Donna. I think of you often and still keep you in my prayers. :) Thank you for writing this - I imagine it was difficult.

    I love that video by Elder Holland. Elder Scott gave a talk a few years ago called "The Supernal Gift of Prayer" that voices a similar idea: if we are doing our best to follow the Lord, He won't let us go too far down a wrong road before turning us around again. That talk meant everything to me during a very crucial time of decision making and stress in my life - maybe it would be meaningful for you as well. :)

    You continue to be one of my biggest inspirations and role models - you can do this!!! And I will read every blog post and continue to pray for you! Love you Donna! (PS - is there a list I can get on for wedding announcements? :)

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    1. Thank you so much, Rachel! Elder Scott's talk has also been on my mind a lot lately. It's definitely helpful to know that Heavenly Father will help us in that way. Also, I checked my address book, and it looks like I have your address already for invitations! We are sending them out soon, so you'll get it in a couple of weeks! Thanks so much for your love, prayers, and support. Love you, girl!

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  2. You are such a beautiful person and your attitude is inspiring. I'm with you all the way! Much love.

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  3. It inspires us to face our challenges and trails, when you face this one with such faith and courage. Of coarse it is hard, and naturally we cry now and then (we are crying machines, right), but I feel so blessed to know you and want to say thank you for sharing your story. We love you so.

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  4. Donna, you rock. You are so amazingly brave. Please keep us posted on what we can do to help. We are praying for you, girl.

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