Hi friends! :) I just wanted to write a quick update about where I am and how I am doing after recently learning about my leukemia. First of all, I've been having labs done every week since I got out of the hospital. My white blood cell count has come down considerably, and has been in the normal range almost this whole time! It was a little, tiny bit elevated again two weeks ago, but just barely. My oncologist was not worried about this, as she said it’s going to be normal for us to see elevated levels from time to time. This is good news, as my levels have become much more regulated on the new medications, in a short period of time.
Since my levels have been good, I have been able to resume life as normal for the most part. I've been back at work, I've gone to hockey games, I've traveled for Thanksgiving and Christmas, and I've gotten to hang out with my family and friends like normal. I was worried about getting to do things like this, because "cancer" seems so scary right off the bat. With precautions about being in large crowds and being around people who may be sick, I have done well, and been well, these last weeks!
"'Tis the season to be jolly and joyous" - a line from "One More Sleep ’til Christmas" by Kermit the Frog. If you know me very well, you know just the thought of Christmas can move me to tears, as it has many times over the last few weeks. The joy I feel when I think about the Christmas spirit is overwhelming to me in a way that overshadows a lot of other things. Honestly, despite the chaos caused by getting my diagnosis right in the midst of the holiday season, I think the timing has made this whole situation slightly easier. The season has gone by so fast! We're all busier than usual with holiday planning, shopping, traveling, etc., but this year I've also had to juggle adding in doctor's appointments (so, so many doctor's appointments), new medications and side effects, and adjusting to my life changes. All of this has surely added a quality of uncertainty to these last few months—one that at any other time of year may have cast a much larger shadow over me.
The peace I have felt has certainly been a God thing, and I will be the first to acknowledge that. Though I can also admit that my love for Christmas, as both a commercial holiday and celebration of the birth of Christ, has made a world of difference. I have had something to focus on—something I love and that brings me great happiness. That being said, it has still been difficult, but know that I am doing well for the most part. My humor and heart have stayed relatively normal in my opinion, and I feel like I've done a fine job coping so far.
There are a few things that have weighed heavily on me though. For one, I have felt more isolated in the last month and a half than I ever have before—which is absurd considering my assigned analysis of Ender's Game in the ninth grade. My beloved English teacher quite literally BANISHED me and a friend to the far corner of her classroom. We spent what felt like years, but was probably more like a couple of weeks, sitting in the corner by ourselves while our class analyzed specific themes in the book Ender's Game by Orson Scott Card. Our theme was, you guessed it, isolation. Not only did we examine how isolation was used as a recurring theme in the plot, but we experienced it as well. It was a great (and fun) teaching technique to really help us get in the right mindset to do such an analysis, but let me just say, Ender's Game has nothing on having cancer!
It has been hard because chronic cancer is treated very differently than other, more common cancers. I have not been able to relate to many of the other people going through cancer I've spoken to or read about, because of how our situations differ. When I tell people I am on chemo, most people imagine going to an oncology clinic to get intravenous chemotherapy. In contrast, my treatment mainly consists of having blood work drawn weekly and taking countless pills every day, multiple times a day, though I do still experience the side effects of my own chemo pills. So far, the worst of my side effects have been a lot of lightheadedness, loss of appetite, shortness of breath, and migraines. Many people on chemo have much worse experiences, and so while I am grateful I have been feeling well, it has been hard to connect to others for these reasons.
It has also been hard, since chronic myeloid leukemia (CML) is most commonly diagnosed in men over 65, but I have made a few online friends who are around my age who also have CML. I have joined some Facebook groups made up of people with CML, and have also participated in online forums for young adults with all kinds of cancer. Towards the beginning of December I got to take part in a week-long conference called YA Cancer Gabfest. There were video sessions every day hosted by organizations that provide support and resources to adolescents and young adults with cancer. Some were informative, and some were informal and just stress-relieving. I didn't get to participate in all of them, but it was great getting to hear from others who have been in my position or are currently in it as well. I met a few people through those sessions and chats as well.
One common source of grief that I have read CML patients express is the lack of "ringing the bell." Usually in oncology and cancer clinics, there is a bell, that when rung, signifies something like the completion of treatment or a patient entering remission. For CML patients, treatment is ongoing, usually for life, and periods of remission often last less than a few years at a time, if at all. While the cancer is often treatable and has a high life expectancy with the help of a type of chemotherapy pill called a TKI, it is discouraging when it sets in that it doesn't go away—that there is no cure.
For me personally, this thought of not ringing the bell—the thought of being in treatment for the foreseeable future—also ties into how I view and think of my own body now. Like most teenagers, I spent many years struggling to make sense of my self worth. Luckily, I grew to understand that I am who I am, and I have made peace with myself. What I feel now towards my body is so different than the feelings I've experienced in the past. It is like a love-hate relationship. I am angry that my body is not functioning correctly, but I am also inclined to be okay with this challenge. I cannot change it, so there is no use feeling hostility towards myself. I have no control over the things my body is doing in this regard, yet it almost feels like a betrayal of my self, of my body, to be okay—to move forward. I don't know how to reason out with myself the dichotomy of these feelings.
Right now, moving forward looks like coming to terms with a lot of things. While I am doing well mentally, obviously there are still things I am spending a lot of time ruminating on. I start my TKI in a few days, so I am worried about new, and possibly harsher, side effects. I have lots of upcoming doctor's appointments, seven in January alone. I am still dealing with insurance, referrals, PTO, FMLA, immunocompromisation, medication side effects, etc. It is just a lot that can be utterly overwhelming when I think about them too long. So while I am keeping positive and have a good mindset regarding my health and treatment, there are things I need to work on and work through.
If you are the praying sort, in this time I would most appreciate prayer that I tolerate my new chemo pills well. I would also ask that you be praying that I am able to put together the best medical care team I can. I'll need God's provision and guidance as I continue to connect with primary care, oncology, behavioral health, cardiology, radiology, care coordinators, case managers, and other specialists. Any and all prayer is appreciated. I will be praying God's will be done in my life. I may not understand why this is something I am going through, but I am secure in my faith that this can be used for the glory of God. I will continue living my life as I always have, just with a little bit more attention and care to my blood, bone marrow, and overall health!
💚❤️💚❤️💚❤️💚❤️