Wow, I really left you hanging, didn’t I?
It’s been a year since I told you that I was struggling, that I wasn’t doing well. When I went on leave last May, I felt broken, I felt alone, and I felt like I couldn't be fixed.
I am happy to report that I’ve come a long way in a year.
Taking time off was the very best thing I have ever done for myself. It's easy to understand that your body needs time to heal. It's harder to see that your mind does too. Time (and counseling) helped me see that I wasn't broken, and I certainly wasn't alone.
The dichotomy of before and after cancer is difficult to explain, especially when you're still grappling with it yourself. Nothing has changed, but everything is different. I am the same person, but I am radically altered. And I was clinging so hard to the former that I failed to recognize the importance of acknowledging the latter.
Let’s talk about all the things that I've learned:
- I have PTSD.
- I probably hadn't finished processing the first cancer when I got hit with the second.
- I was angry that people didn't know that I wasn't just "all better".
- I’ve always had anxiety and never realized it.
- My job was draining me in ways I did not see.
- I need to reconnect with and learn to trust my body again.
- I have to embrace and feed the artist in me.
- I still work to do to overcome feelings of isolation.
That's a lot of learnings, huh?
I think the topic of trauma and PTSD warrants its own, separate post, but I've learned quite a bit about it this past year (what it is, where it comes from, what it does to you). I know that it's not a rational thing. I'm learning to recognize my triggers. And I've learned some coping mechanisms that allow me to recognize when an anxiety attack is happening and help me accept it for what it is.
Yoga has been an incredible help in the process. What started for me as a purely physical practice years ago has evolved into more. I also know that I feel better when I spend time outside, so I try to find ways to work that in. And when I struggle and have bad days (and I do), I try to be patient and gentle with myself (even though I don't always do a good job).
So where am I now? I feel, in an odd way, more wholly myself than ever before. Like the built-up layers of personas that I'd tried on over the years were stripped away and the parts that were left were just me. I feel authentic. I feel like I know myself. I feel like I fit myself.
I've been filling my time with all sorts of creative pursuits: quilting, crocheting, pottery, reading, writing. I'm loving being an auntie, not only to my actual nephew but to my "adopted" kiddos as well. I’m excited for new adventures: rock climbing in NY, a wedding in India.
If you'd told me a year ago that I would feel like this now, I wouldn't have believed you. It's been a long road to get here. But oh, how glad I am to have made it this far.
Wednesday, May 17, 2017
Sunday, April 16, 2017
neVer forgeT
I know this is not the post anyone was expecting would come next, but it's a post that I needed to write today.
I remember exactly where I was when I first heard. I was between classes and one of my friends stopped me in the hall. "There's been a shooting at Virginia Tech" - she remembered where I was from.
I called my mom. "Have you heard from Dad? There's been another shooting at Tech." (There had been one a few months prior.) No, she hadn't, but he was teaching class then. She would try to check in with him later.
I went to my next class, and when I came out, my world was shattered.
I didn't usually bring my laptop to class with me, but I had a presentation to work on that day and had intended to set up camp in my lab and get it finished. Instead, I was glued to the news, watching in horror as that number kept increasing. I kept checking Facebook, to see who had posted anything. I texted a good friend I knew was on campus, praying that I would get a response. I remember the relief as I heard from him, and the worry as he told me that a friend of his had been in that building and he hadn't heard from her yet. I remember falling apart when I got a text from him later that night, telling me that she didn't make it.
My dad worked in one of the nearby buildings and was on lock down for hours. The time until I knew that he was home safe was excruciating. The anxiety of waiting to see if a name I knew would appear on the list was unlike anything I've ever experienced. I remember the physical pain that came with that fear.
I remember the vigil held on my campus that evening. I remember getting up to speak and trying to explain to everyone how similar Blacksburg and Lewisburg are, that this wasn't a big city school, that it could have happened to us here. I remember asking people to respond with love, not blame. I remember feeling like there was no way to convey what I wanted them to know.
I muddled through the rest of the semester. I got an extension on that presentation. I remember being angry with the people around me who were carrying on like nothing had happened. I was furious when university officials sent out a campus-wide message saying that they had reached out to anyone with Virginia Tech connections to help support them, but no one had reached out to me. After finishing finals, I couldn't wait to get home.
But when I got home, I still felt lost.
I remember walking the drill field, with all of the memorials set up. I remember the tears, the touching tributes, the outpouring of kindness. And I remember feeling guilty about being so upset, like I was an intruder in this suffering. I wasn't there when it happened. No one I knew personally had been killed. I thought that it shouldn't be affecting me so much, but it was.
Ten years later, I am only starting to fully understand the impact this had on me, and I realized that I needed to write something, that there were things I still needed to process. With what I have learned about trauma in the last few years, I am able to see some things more clearly now. Trauma comes in all forms, and you can't always control how it affects you. Years later, news of a possible shooter on campus again sent me into a full blown anxiety attack. I didn't realize what it was at the time, but I now know that this is a classic sign of PTSD. I should have gone to counseling, but my belief that the tragedy didn't belong to me made me think I didn't need it.
Ten years later, the memories are still vivid. Ten years later, I still love and ache for my Hokie home. And ten years later, those healing words from the poet Nikki Giovanni have become woven into my being:
I remember exactly where I was when I first heard. I was between classes and one of my friends stopped me in the hall. "There's been a shooting at Virginia Tech" - she remembered where I was from.
I called my mom. "Have you heard from Dad? There's been another shooting at Tech." (There had been one a few months prior.) No, she hadn't, but he was teaching class then. She would try to check in with him later.
I went to my next class, and when I came out, my world was shattered.
I didn't usually bring my laptop to class with me, but I had a presentation to work on that day and had intended to set up camp in my lab and get it finished. Instead, I was glued to the news, watching in horror as that number kept increasing. I kept checking Facebook, to see who had posted anything. I texted a good friend I knew was on campus, praying that I would get a response. I remember the relief as I heard from him, and the worry as he told me that a friend of his had been in that building and he hadn't heard from her yet. I remember falling apart when I got a text from him later that night, telling me that she didn't make it.
My dad worked in one of the nearby buildings and was on lock down for hours. The time until I knew that he was home safe was excruciating. The anxiety of waiting to see if a name I knew would appear on the list was unlike anything I've ever experienced. I remember the physical pain that came with that fear.
I remember the vigil held on my campus that evening. I remember getting up to speak and trying to explain to everyone how similar Blacksburg and Lewisburg are, that this wasn't a big city school, that it could have happened to us here. I remember asking people to respond with love, not blame. I remember feeling like there was no way to convey what I wanted them to know.
I muddled through the rest of the semester. I got an extension on that presentation. I remember being angry with the people around me who were carrying on like nothing had happened. I was furious when university officials sent out a campus-wide message saying that they had reached out to anyone with Virginia Tech connections to help support them, but no one had reached out to me. After finishing finals, I couldn't wait to get home.
But when I got home, I still felt lost.
I remember walking the drill field, with all of the memorials set up. I remember the tears, the touching tributes, the outpouring of kindness. And I remember feeling guilty about being so upset, like I was an intruder in this suffering. I wasn't there when it happened. No one I knew personally had been killed. I thought that it shouldn't be affecting me so much, but it was.
Ten years later, I am only starting to fully understand the impact this had on me, and I realized that I needed to write something, that there were things I still needed to process. With what I have learned about trauma in the last few years, I am able to see some things more clearly now. Trauma comes in all forms, and you can't always control how it affects you. Years later, news of a possible shooter on campus again sent me into a full blown anxiety attack. I didn't realize what it was at the time, but I now know that this is a classic sign of PTSD. I should have gone to counseling, but my belief that the tragedy didn't belong to me made me think I didn't need it.
Ten years later, the memories are still vivid. Ten years later, I still love and ache for my Hokie home. And ten years later, those healing words from the poet Nikki Giovanni have become woven into my being:
We are strong enough to stand tall tearlessly;
We are brave enough to bend to cry
And sad enough to know we must laugh again.
We are Virginia Tech.
Wednesday, May 18, 2016
Time to Heal
I love writing. I feel such a sense of accomplishment after taking my thoughts and sorting them, aligning them, and making them concrete, turning them into something that anyone can read, understand, and feel. There is a power in naming something, in finding just the right words for just the right time. Some days, the words flow freely, thoughts leaping from my head onto the page with no hesitation. Other times, the words need to be coaxed out, shy at first, but gradually growing bolder as their numbers swell and they find their direction. But sometimes, very rarely, the right words elude me completely. I know what I want to convey, what I need to share, but none of the words I put together are right.
This is one of those times. And since my own words are failing me, I have to rely on the words of others:
"After more than a year of diagnosis, treatment and waiting, it's almost as if, finally and unexpectedly, my psyche heaved a sigh and gave itself permission to implode. ... It's harder to write about the weight of depression than it is to write about ... cancer and its physical indignities. Cancer is clear biological bad luck. But depression, no matter how much we know about it, makes part of me feel as if it's somehow my fault, that I'm guilty of something that I can't quite articulate."
Thank you, random stranger on the internet, for giving me the words that I could not otherwise find.
The last two months have been hard. Physically, a cold turned into a sinus infection that wasn't quite gone when I picked up a respiratory virus just at the same time that allergy season kicked into full gear. I've been tired, just making it through the days until I can crash.
Mentally, things weren't any better. I have felt like the world is closing in on me and like everything is spinning out of control. I have felt like there isn't any point and I've wanted to quit everything. I have been an emotional wreck, getting angry over little things and weeping over nothing. I have been distracted and not at all productive, avoiding pretty much everything.
I have not been myself.
And even after realizing that something was definitely wrong (which, looking back, took an embarrassingly long time), I still struggled to admit it. I feel like I should be fine. I've been given the all clear by my doctor, so why am I still not better? (He assures me, by the way, that this is all normal, which makes me feel a teeny bit better about everything.)
Remember in the previous post when I mentioned that there is no timeline for recovery? The last two months really hammered that home for me.
So I'm taking some time off work to get myself back together. I'm going to catch up on life, on all the little things that piled up or were put off over the last year. I have a referral to see someone who specializes in cancer counseling and will hopefully be able to start seeing her soon. And I'm going to get myself back into shape physically, because I know that will help me feel better mentally too.
As hard as it was to admit, I desperately need this. It's time to focus on getting myself better. It's time to do some healing.
This is one of those times. And since my own words are failing me, I have to rely on the words of others:
"After more than a year of diagnosis, treatment and waiting, it's almost as if, finally and unexpectedly, my psyche heaved a sigh and gave itself permission to implode. ... It's harder to write about the weight of depression than it is to write about ... cancer and its physical indignities. Cancer is clear biological bad luck. But depression, no matter how much we know about it, makes part of me feel as if it's somehow my fault, that I'm guilty of something that I can't quite articulate."
Thank you, random stranger on the internet, for giving me the words that I could not otherwise find.
The last two months have been hard. Physically, a cold turned into a sinus infection that wasn't quite gone when I picked up a respiratory virus just at the same time that allergy season kicked into full gear. I've been tired, just making it through the days until I can crash.
Mentally, things weren't any better. I have felt like the world is closing in on me and like everything is spinning out of control. I have felt like there isn't any point and I've wanted to quit everything. I have been an emotional wreck, getting angry over little things and weeping over nothing. I have been distracted and not at all productive, avoiding pretty much everything.
I have not been myself.
And even after realizing that something was definitely wrong (which, looking back, took an embarrassingly long time), I still struggled to admit it. I feel like I should be fine. I've been given the all clear by my doctor, so why am I still not better? (He assures me, by the way, that this is all normal, which makes me feel a teeny bit better about everything.)
Remember in the previous post when I mentioned that there is no timeline for recovery? The last two months really hammered that home for me.
So I'm taking some time off work to get myself back together. I'm going to catch up on life, on all the little things that piled up or were put off over the last year. I have a referral to see someone who specializes in cancer counseling and will hopefully be able to start seeing her soon. And I'm going to get myself back into shape physically, because I know that will help me feel better mentally too.
As hard as it was to admit, I desperately need this. It's time to focus on getting myself better. It's time to do some healing.
Tuesday, March 15, 2016
Time Flies
Last February/March, our world was shattered and our lives fell apart. It was an incredibly stressful time, full of doctors appointments, tests, and uncertainty. There was a (thankfully brief) period of time, early on, when we thought I was dying. We talked about death in our own way, stressing that no matter what happened to me, life must go on. We were so relieved to learn that even though things would be just awful for a while, I would make it through. The road would be long and it was hard to picture the end, but we had a path to follow.
I can't believe it's been over a year already. How far we have come since then.
Here's what everyone has been waiting to hear: my PET scan in February looked good. There was still slight metabolic activity in the mediastinum (where the tumor was), but it was significantly smaller than in my pre-radiation scan (and a biopsy showed no sign of active disease at that point already). My doctor suspects this is just minor residual inflammation that will die down in time - nothing to be concerned about. This means I've moved from active treatment to long-term monitoring: for the next year, I'll get a CAT scan every 3 months. Assuming they all look fine, they'll start spacing out how often I'm checked. And if everything looks good for long enough, we'll reach the point of confidence that if the cancer was going to return, it would have already.
When I reflect back on the past year, the details are already blurring. It is hard to remember the pain: not that I really want to anyway, but the brain does an incredible job of dulling unpleasant memories. On a day to day basis, I feel like I am back to my old self, able to just live life without extra planning or contingencies. It's surprisingly easy to fall into thinking that things weren't so bad.
But every now and then I get caught off guard by something - a smell or noise, fatigue at an unexpected time, a specific task that is more difficult than before - that can bring up the memories in sharp detail and the pain is real again. I have to remind myself that this is okay, that there is no timeline for recovery, that this experience is not something you just get over. Thankfully these moments are becoming less frequent the more time that passes.
The past year was life altering. I can never be "back to normal", because that normal doesn't exist any more. After everything fell apart, we've had to build it back up again. Priorities have shifted. Plans have changed. Goals are different. And that's okay - I like where things have ended up. I feel more alive in the present than ever before. You know all those things that you talk about doing but never get around to? (We should hang out more! I'd love to come for a visit some time! That new class sounds interesting, maybe I should try it!) I realized that I should just do these things instead of just talk about them. Novel concept, right?
I also realized that I've finally fully embraced being a cancer survivor. Like any other single label, it is not all that I am and cannot wholly describe me. But my cancer story has become woven into the fabric of my life in such an integral way that it has become part of a larger, beautiful work and could never be separated from who I am. I am so many things, cancer survivor included.
I can't believe it's been over a year already. How far we have come since then.
Here's what everyone has been waiting to hear: my PET scan in February looked good. There was still slight metabolic activity in the mediastinum (where the tumor was), but it was significantly smaller than in my pre-radiation scan (and a biopsy showed no sign of active disease at that point already). My doctor suspects this is just minor residual inflammation that will die down in time - nothing to be concerned about. This means I've moved from active treatment to long-term monitoring: for the next year, I'll get a CAT scan every 3 months. Assuming they all look fine, they'll start spacing out how often I'm checked. And if everything looks good for long enough, we'll reach the point of confidence that if the cancer was going to return, it would have already.
When I reflect back on the past year, the details are already blurring. It is hard to remember the pain: not that I really want to anyway, but the brain does an incredible job of dulling unpleasant memories. On a day to day basis, I feel like I am back to my old self, able to just live life without extra planning or contingencies. It's surprisingly easy to fall into thinking that things weren't so bad.
But every now and then I get caught off guard by something - a smell or noise, fatigue at an unexpected time, a specific task that is more difficult than before - that can bring up the memories in sharp detail and the pain is real again. I have to remind myself that this is okay, that there is no timeline for recovery, that this experience is not something you just get over. Thankfully these moments are becoming less frequent the more time that passes.
The past year was life altering. I can never be "back to normal", because that normal doesn't exist any more. After everything fell apart, we've had to build it back up again. Priorities have shifted. Plans have changed. Goals are different. And that's okay - I like where things have ended up. I feel more alive in the present than ever before. You know all those things that you talk about doing but never get around to? (We should hang out more! I'd love to come for a visit some time! That new class sounds interesting, maybe I should try it!) I realized that I should just do these things instead of just talk about them. Novel concept, right?
I also realized that I've finally fully embraced being a cancer survivor. Like any other single label, it is not all that I am and cannot wholly describe me. But my cancer story has become woven into the fabric of my life in such an integral way that it has become part of a larger, beautiful work and could never be separated from who I am. I am so many things, cancer survivor included.
Thursday, November 19, 2015
DONE
I had my final radiation appointment last Monday, which means that I'm done treatment.
Let that sink in for a moment.
I'M DONE!!!!
I saw my oncologist on Tuesday to find out about follow-up. I'll be getting another PET scan, but that won't be until February to give my body a chance to recover. I get to have my port removed next Tuesday. The only thing I have between then and February is a follow-up office visit with my radiation oncologist mid-December.
I'm relieved and I'm excited. Life can start to move forward again. And we continue to celebrate the small as well as the large - things like going to get a real haircut yesterday, because that means I have enough hair again for that to be needed!
The most important thing for the next few weeks is to enjoy the holidays - doctor's orders. I think I can manage that :)
Let that sink in for a moment.
I'M DONE!!!!
I saw my oncologist on Tuesday to find out about follow-up. I'll be getting another PET scan, but that won't be until February to give my body a chance to recover. I get to have my port removed next Tuesday. The only thing I have between then and February is a follow-up office visit with my radiation oncologist mid-December.
I'm relieved and I'm excited. Life can start to move forward again. And we continue to celebrate the small as well as the large - things like going to get a real haircut yesterday, because that means I have enough hair again for that to be needed!
The most important thing for the next few weeks is to enjoy the holidays - doctor's orders. I think I can manage that :)
Tuesday, October 6, 2015
Tattoos and Timelines
I got my first tattoo last week! (And also my second and third!) But let's rewind for a minute.
After meeting with the radiation oncologist the week prior, we are feeling pretty good about things. We learned that the protocol is relatively short (every weekday for 4 weeks), the doses they use for lymphoma are lower than for other cancers (20-40 gray versus 60-80), and the expected side effects really are minimal. After the fun of chemo and having been preparing myself for a SCT, this sounds like a walk in the park!
In order to get ready, I had to get a scan done so that the doctors and physicists can figure out exactly how they are treating me. They map out the exact location of where the tumor was, where the remainder is, and where all my organs are. They want to treat an area somewhat bigger than what is left while still staying as far away from everything else as possible. Based on the scans, they do a bunch of calculations to figure out organ volumes and how much scatter can be tolerated as well as determine exactly how they want to direct the radiation. Once they've gotten that all figured out, they do another scan to double check and as long as everything looks right, you're good to start treatment.
In order for this all to work, you have to be positioned EXACTLY the same each time you get on the machine. Which means they need some way to get you all lined up again. Which means tattoos - 3 in my case: one on each side of my chest and one in the middle.
Now let's play find the tattoo:
I knew that they would be small, but I didn't realize just how tiny they would be! (In case you weren't sure, it's the black dot on the bottom that's way smaller than my moles/freckles.) Although I mostly don't notice it, when I do it's just kind of weird - it looks like I poked myself with a pen and that it should just wash off ... but it obviously doesn't.
So I've had my initial scan and my tattooing and I go back on Thursday for my "dry run". Assuming it all goes well, I'll start radiation on Tuesday the 13th.
And for all you forward-looking people: that means we'll be done before Thanksgiving!
After meeting with the radiation oncologist the week prior, we are feeling pretty good about things. We learned that the protocol is relatively short (every weekday for 4 weeks), the doses they use for lymphoma are lower than for other cancers (20-40 gray versus 60-80), and the expected side effects really are minimal. After the fun of chemo and having been preparing myself for a SCT, this sounds like a walk in the park!
In order to get ready, I had to get a scan done so that the doctors and physicists can figure out exactly how they are treating me. They map out the exact location of where the tumor was, where the remainder is, and where all my organs are. They want to treat an area somewhat bigger than what is left while still staying as far away from everything else as possible. Based on the scans, they do a bunch of calculations to figure out organ volumes and how much scatter can be tolerated as well as determine exactly how they want to direct the radiation. Once they've gotten that all figured out, they do another scan to double check and as long as everything looks right, you're good to start treatment.
In order for this all to work, you have to be positioned EXACTLY the same each time you get on the machine. Which means they need some way to get you all lined up again. Which means tattoos - 3 in my case: one on each side of my chest and one in the middle.
Now let's play find the tattoo:
I knew that they would be small, but I didn't realize just how tiny they would be! (In case you weren't sure, it's the black dot on the bottom that's way smaller than my moles/freckles.) Although I mostly don't notice it, when I do it's just kind of weird - it looks like I poked myself with a pen and that it should just wash off ... but it obviously doesn't.
So I've had my initial scan and my tattooing and I go back on Thursday for my "dry run". Assuming it all goes well, I'll start radiation on Tuesday the 13th.
And for all you forward-looking people: that means we'll be done before Thanksgiving!
Tuesday, September 22, 2015
Sweet Relief
For anyone who doesn't want to read through everything that happened in the last month, let me sum up: a biopsy of the remainder of my tumor came back clean and I'll be starting radiation soon.
If you're happy with that summary, see you next post. If you want the details of how we got to this point and why that is incredibly good news, keep reading:
When we last left our heroine, she had just learned from her doctor that more chemo, radiation, or a stem cell transplant were all on the table for treatment options, but that she needed to get a second opinion on how to proceed.
After initially being told that it might take anywhere from 1-4 weeks to get approval for the second opinion consult, it was only a little over a week before I heard from my office that my insurance had approved the request and the appointment was scheduled. Shortly after that, I got a call from someone at the new office who insisted that they were out of network for my insurance and the appointment wouldn't be covered. I freaked out slightly, went to my office, and sat down with the scheduler there while she called back to get things straightened out. I ultimately got a call from the director at the new office apologizing for the confusion, promising that everything was fine, and giving me her contact information in case there were any other issues.
The doctor we were going to see was the director of a bone marrow transplant program, so I went into this assuming that I most likely needed a stem cell transplant but my doctor just wanted to make sure. So I had read a bunch about SCTs - what the procedure would entail, what the side effects would be ... not pleasant. But I was pretty sure this was in my future and I would obviously do whatever was necessary. However, when we saw her the following week, we learned that she could not make any recommendations about treatment course without a biopsy. Sometimes you can get a false positive on a PET scan from cells that are dying, so she needed to look to make sure she knew what we were dealing with. This didn't seem that likely, given that my scans after 3 cycles and after 6 cycles looked essentially the same, but we had to make sure.
The biopsy was scheduled for the end of the following week. Having gone through this once before, I figured this was no big deal, but things didn't go as well this time. First, the procedure was in the afternoon and the doctor ended up being almost 2 hours late. Not having been allowed to eat or drink after midnight the night before, I was getting a bit hangry at that point. Second, after the doctor took the last sample, I started to get a shooting pain in my ribs that ran from the front of my chest around the bottom of my ribs into my back. It hurt to breathe, it hurt to move, and the pain was intense enough to make me cry. They sent me for a chest x-ray but everything looked normal - no punctured lung here. The doctor's thought was that the nerves that run that path were irritated from the biopsy and that it would feel better pretty quickly. They gave me some pain meds and by the next morning, it was completely fine. I was still sore and slightly uncomfortable at the site of the biopsy for the next day, but it was a manageable soreness.
A little over a week more of waiting brings us up to yesterday, when my doctor walked into my appointment with a huge grin on his face and said that he had really good news for us. The biopsy showed no sign of active disease and I just need radiation. I cried. There was hugging. It was a good day.
I have an appointment with the radiation oncologist on Thursday to find out more about the timeline, but even the worst extreme of radiation is better than the best extreme of a stem cell transplant. I am immensely relieved and am hopeful that I'll get through this next phase without feeling too terrible. And it's now possible that I might be done treatment before Thanksgiving - what a wonderful holiday gift that would be!
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