The journey continues
It has been over a year since I wrote! Usually May 2nd, the anniversary of my diagnosis, prompts me to come here and write. This year on May 2nd I was on a great trip to Bend, Oregon with my husband. I wanted to write but didn't have the time or the pull to do it. We were also occupied with our impending move. We moved to another city in the Sacramento area, and my husband is now attending medical school. We are very excited about this!
I feel like I'm reminded all the time these days that I had cancer. I think about it multiple times a day. If you had told me in 2012 or 2013 that this would be the case, I would be very sad! But that's my reality. I still don't know why, but I have shoulder and neck pain all the time. It spiked in April 2018 and has been up and down since. There have been months and months where I didn't prioritize it and I waited for it to go away on its own. Then there have been times where I've been fed up and actively pursued answers. I've had an X-ray, an MRI, and an EMG from a neuro-muscular specialist. Everything has come back clear. When there's something wrong and I'm looking for answers, tests coming back clear and normal is frustrating and not a relief at all! Actually now that I think about it, the uncertainty of my consistent pain has kept me from writing about it here. I have thought to myself "Once it's resolved, I'll sit down and relay the story." That day still hasn't come. My days are really up and down right now. I've started acupuncture through Kaiser, and it's just a $30 copay. We'll see what that does. They're very upfront that it's not a long term treatment or cure. The neuro-muscular specialist said I could do a round of steroids but that's a last resort to me. Turning my neck is painful, and many days, I can't get comfortable and my shoulders feel heavy and like they're improperly attached to my body. I don't know what the answer is and I hope for one soon. I saw a physical therapist earlier this year and did the stretches/strengthening he recommended but I didn't see improvement. When I tried to schedule another appointment with him, the office said he wasn't available for any more appointments going forward, for now. How weird is that?? I wonder, is his wife sick? Is he ill? Administrative leave of some kind? Who knows? So that kind of fell off for me. Maybe I'll see a different PT now that I'm in a different city.
I took a 14 day solo national parks trip this summer right after we moved, before my new job started. Amazingly, I didn't have pain on the trip. I don't know what the connection is but I'm very curious what the deal is with that. On this trip, I felt strong and basically unstoppable. I hiked almost everyday. It's the kind of trip I pined for in 2012 and 2013 when I was recovering from surgeries and wishing for travel and activity and life experience. This trip was definitely soul-nourishing. Below are some of my favorite photos from the trip. You can see details of my travels on my instagram @caitluke.
This trip was empowering and did wonders for my self esteem. I was so pleased and I think I'm still riding a high from it even though I've been home for a month. The thing about the travel bug is that trips don't satiate my desire for travel; they actually increase it exponentially. I'm always stuck between wanting to go many places NOW, and the practicality that I can't do that, and hopefully have my whole life to see every place I want to see.
I've been drawn to non-fiction cancer-related memoirs. One of the most beautiful books I've read is When Breath Becomes Air. It's an incredibly well written memoir by a neurosurgeon who had terminal cancer. The book is unfinished because cancer claimed his life while he was writing. It is heartbreaking but beautiful. I encourage you to read it. My dad works at Stanford Hospital and helped care for the author. Small world! If you have cancer, or your loved one has cancer, or basically if you have a soul, this book will affect you deeply. It was painful to read but the story was absolutely vital to experience in my opinion. I heard about the book on NPR. The author's widow did an interview for the posthumous release of the memoir, and it got my attention. I am so glad this book found its way to me.
Another book I heard about on NPR was called Everything Happens For A Reason and Other Lies I've Loved by Kate Bowler. I loved this book, and it was also painful to read. This author had cancer when her son was a toddler, so right off the bat it's just gut-wrenching. She is still alive, so that's a relief. It's a great book and she's amazing at telling her story with humor and a deeply reaching description of what it's like to consider you might die soon and leave behind a life that was just getting started. She did a TED talk, and the talk is basically an exact summary of the book. There wasn't anything in the TED talk I hadn't gotten from the book. Here is the talk:
And now I bring you another TED talk about a woman having cancer, only this woman was much younger. The talk is called What Almost Dying Taught Me About Living. She talks about how once treatment ended and she was in remission, she felt lost and unsupported. If you've read this blog, you know that that's how I felt after the inertia of surgeries and treatment slowed. No one is to blame for this at all. But the family support recedes and life resumes as normal. And I had a hard time living again and adapting to my new normal. I was 20 years old and I didn't think I wanted to go back to college, and I had this inheritance from my Grandad who passed away, but for some reason I never used that money to travel. I look back now and regret that immensely, but I can understand and have compassion for where I was at back then--not ready to see the world just yet. My scope of what was possible for me was limited. Anyway, here's the talk. I love it. And no I don't pretend to completely relate to having something as serious as leukemia, but I relate to her and I am so grateful for the internet connecting me to people who understand me and the journey I've been on.
So what am I up to now? Besides all the mysterious physical pain I got you up to speed on...This spring I finished community college with two AA degrees and an AS degree. I am proud of this accomplishment! I don't know where to go from here. It's up in the air. I may go on to a four year school. My husband has student loans for medical school, and I partially support us. I wish I made more money and could entirely cover our living expenses. This brings up feelings of what cancer took from me. And then my self doubt tells me that if not for cancer, I probably would have left school for a different reason, and I was probably destined not to finish and get a real job with good benefits and good pay regardless of having cancer. That mean voice inside! Who knows what would have been....so hard to say. I know 100% that I am not the only person battling the inner self doubt voice, and wondering about the past and what could have been. My goal is to not let a fear voice dictate my future. Taking that trip solo was a good blueprint for that. I had a lot of doubt about my financial ability to go take a two week trip after moving and in between jobs. Lots of people voiced opinions to me about solo travel as a woman. I had to ultimately decide to do what would make me happy, because pleasing others is an impossible aim. There will always be someone thinking I should have turned left instead of right. So I might as well follow my intuition, since people will disagree or fail to understand no matter what.
Any other young people out there living a post-cancer life? Let's talk :)
I feel like I'm reminded all the time these days that I had cancer. I think about it multiple times a day. If you had told me in 2012 or 2013 that this would be the case, I would be very sad! But that's my reality. I still don't know why, but I have shoulder and neck pain all the time. It spiked in April 2018 and has been up and down since. There have been months and months where I didn't prioritize it and I waited for it to go away on its own. Then there have been times where I've been fed up and actively pursued answers. I've had an X-ray, an MRI, and an EMG from a neuro-muscular specialist. Everything has come back clear. When there's something wrong and I'm looking for answers, tests coming back clear and normal is frustrating and not a relief at all! Actually now that I think about it, the uncertainty of my consistent pain has kept me from writing about it here. I have thought to myself "Once it's resolved, I'll sit down and relay the story." That day still hasn't come. My days are really up and down right now. I've started acupuncture through Kaiser, and it's just a $30 copay. We'll see what that does. They're very upfront that it's not a long term treatment or cure. The neuro-muscular specialist said I could do a round of steroids but that's a last resort to me. Turning my neck is painful, and many days, I can't get comfortable and my shoulders feel heavy and like they're improperly attached to my body. I don't know what the answer is and I hope for one soon. I saw a physical therapist earlier this year and did the stretches/strengthening he recommended but I didn't see improvement. When I tried to schedule another appointment with him, the office said he wasn't available for any more appointments going forward, for now. How weird is that?? I wonder, is his wife sick? Is he ill? Administrative leave of some kind? Who knows? So that kind of fell off for me. Maybe I'll see a different PT now that I'm in a different city.
I took a 14 day solo national parks trip this summer right after we moved, before my new job started. Amazingly, I didn't have pain on the trip. I don't know what the connection is but I'm very curious what the deal is with that. On this trip, I felt strong and basically unstoppable. I hiked almost everyday. It's the kind of trip I pined for in 2012 and 2013 when I was recovering from surgeries and wishing for travel and activity and life experience. This trip was definitely soul-nourishing. Below are some of my favorite photos from the trip. You can see details of my travels on my instagram @caitluke.
Cathedral Rock in Capitol Reef National Park, Utah
South Window Arch in Arches National Park, Utah
Here's a moose drinking from an overflowing creek at Difficult Campground in Aspen, CO
Crossing snow pack on a trail in Rocky Mountain National Park in CO
I had such a lovely afternoon swimming in Jackson Lake in Grand Teton National Park, Wyoming
On my drive out, to drive 880 miles home in one day, (13 hours) I saw a buffalo unexpectedly on the side of the road just outside Grand Teton NP. I didn't seek this out at all; it happened totally by surprise.
This trip was empowering and did wonders for my self esteem. I was so pleased and I think I'm still riding a high from it even though I've been home for a month. The thing about the travel bug is that trips don't satiate my desire for travel; they actually increase it exponentially. I'm always stuck between wanting to go many places NOW, and the practicality that I can't do that, and hopefully have my whole life to see every place I want to see.
I've been drawn to non-fiction cancer-related memoirs. One of the most beautiful books I've read is When Breath Becomes Air. It's an incredibly well written memoir by a neurosurgeon who had terminal cancer. The book is unfinished because cancer claimed his life while he was writing. It is heartbreaking but beautiful. I encourage you to read it. My dad works at Stanford Hospital and helped care for the author. Small world! If you have cancer, or your loved one has cancer, or basically if you have a soul, this book will affect you deeply. It was painful to read but the story was absolutely vital to experience in my opinion. I heard about the book on NPR. The author's widow did an interview for the posthumous release of the memoir, and it got my attention. I am so glad this book found its way to me.
Another book I heard about on NPR was called Everything Happens For A Reason and Other Lies I've Loved by Kate Bowler. I loved this book, and it was also painful to read. This author had cancer when her son was a toddler, so right off the bat it's just gut-wrenching. She is still alive, so that's a relief. It's a great book and she's amazing at telling her story with humor and a deeply reaching description of what it's like to consider you might die soon and leave behind a life that was just getting started. She did a TED talk, and the talk is basically an exact summary of the book. There wasn't anything in the TED talk I hadn't gotten from the book. Here is the talk:
And now I bring you another TED talk about a woman having cancer, only this woman was much younger. The talk is called What Almost Dying Taught Me About Living. She talks about how once treatment ended and she was in remission, she felt lost and unsupported. If you've read this blog, you know that that's how I felt after the inertia of surgeries and treatment slowed. No one is to blame for this at all. But the family support recedes and life resumes as normal. And I had a hard time living again and adapting to my new normal. I was 20 years old and I didn't think I wanted to go back to college, and I had this inheritance from my Grandad who passed away, but for some reason I never used that money to travel. I look back now and regret that immensely, but I can understand and have compassion for where I was at back then--not ready to see the world just yet. My scope of what was possible for me was limited. Anyway, here's the talk. I love it. And no I don't pretend to completely relate to having something as serious as leukemia, but I relate to her and I am so grateful for the internet connecting me to people who understand me and the journey I've been on.
So what am I up to now? Besides all the mysterious physical pain I got you up to speed on...This spring I finished community college with two AA degrees and an AS degree. I am proud of this accomplishment! I don't know where to go from here. It's up in the air. I may go on to a four year school. My husband has student loans for medical school, and I partially support us. I wish I made more money and could entirely cover our living expenses. This brings up feelings of what cancer took from me. And then my self doubt tells me that if not for cancer, I probably would have left school for a different reason, and I was probably destined not to finish and get a real job with good benefits and good pay regardless of having cancer. That mean voice inside! Who knows what would have been....so hard to say. I know 100% that I am not the only person battling the inner self doubt voice, and wondering about the past and what could have been. My goal is to not let a fear voice dictate my future. Taking that trip solo was a good blueprint for that. I had a lot of doubt about my financial ability to go take a two week trip after moving and in between jobs. Lots of people voiced opinions to me about solo travel as a woman. I had to ultimately decide to do what would make me happy, because pleasing others is an impossible aim. There will always be someone thinking I should have turned left instead of right. So I might as well follow my intuition, since people will disagree or fail to understand no matter what.
Any other young people out there living a post-cancer life? Let's talk :)
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