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.
Tuesday, March 15, 2016
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!
Thursday, August 20, 2015
More To Be Done
Since finishing chemo mid-July, we've been enjoying life being a little less crazy. I've started trying to work my way back to normal, and slowly but surely, my energy is returning. The blog has been quiet because up until we met with my doctor on Tuesday to find out the results from last week's PET scan, there really wasn't anything to report.
But now I wish I didn't have an update to give. I'm getting really tired of delivering bad news.
My tumor is not gone.
We don't know what the path forward is yet. My doctor is sending me for a second opinion, but we have to wait for insurance approvals before we can even make that appointment, which means it's back to the waiting game.
I'm at peace with the situation. I may not get a say in the hand I've been dealt, but I do get to choose how to play it. So we will deal with whatever comes next, just like we have in the past. We'll take things one day at a time. I'll have bad days and there will be times when everything feels impossible again. But we'll keep going and we'll make it through.
Do you remember my favorite quote about being braver than we expect? (It's at the top of the blog if you don't.) I used to view this as a reminder of what I could aspire to; it was about possibility and encouragement and self-improvement. I was afraid, but there was still hope, because I could be braver. But after this news, I realized just how much I have grown - now it is a reminder of who I am; it is about achievement and reflection and pride. I may still be afraid, but now I know:
I am braver.
But now I wish I didn't have an update to give. I'm getting really tired of delivering bad news.
My tumor is not gone.
We don't know what the path forward is yet. My doctor is sending me for a second opinion, but we have to wait for insurance approvals before we can even make that appointment, which means it's back to the waiting game.
I'm at peace with the situation. I may not get a say in the hand I've been dealt, but I do get to choose how to play it. So we will deal with whatever comes next, just like we have in the past. We'll take things one day at a time. I'll have bad days and there will be times when everything feels impossible again. But we'll keep going and we'll make it through.
Do you remember my favorite quote about being braver than we expect? (It's at the top of the blog if you don't.) I used to view this as a reminder of what I could aspire to; it was about possibility and encouragement and self-improvement. I was afraid, but there was still hope, because I could be braver. But after this news, I realized just how much I have grown - now it is a reminder of who I am; it is about achievement and reflection and pride. I may still be afraid, but now I know:
I am braver.
Wednesday, July 22, 2015
Six Down
I don't feel much like writing right now, but I wanted to share this short update:
Chemo #6 was last Tuesday, and although the nausea was less intense than in round 5, I'm still having occasional episodes of queasiness (mainly scent-related again). But that was it - the last round! We're now back to the part of the game where we don't really know what's happening, so that's a little tough. But I have a PET scan scheduled for the 13th and we should have a better idea of the future once I see my doctor again afterwards.
Regardless of what comes next, making it to this point is something to celebrate, though I'm not sure it has really sunk in yet. We've come a long way - I can't believe that it's actually been 5 months already. I have started to feel a lot better in the last couple days and I'm very excited at the prospect of actually getting to feel good for more than a week. And I'm sure that I'll be more excited in two weeks when I don't have to go back in for another treatment!
So for now, we'll just try to enjoy a bit of a break.
Chemo #6 was last Tuesday, and although the nausea was less intense than in round 5, I'm still having occasional episodes of queasiness (mainly scent-related again). But that was it - the last round! We're now back to the part of the game where we don't really know what's happening, so that's a little tough. But I have a PET scan scheduled for the 13th and we should have a better idea of the future once I see my doctor again afterwards.
Regardless of what comes next, making it to this point is something to celebrate, though I'm not sure it has really sunk in yet. We've come a long way - I can't believe that it's actually been 5 months already. I have started to feel a lot better in the last couple days and I'm very excited at the prospect of actually getting to feel good for more than a week. And I'm sure that I'll be more excited in two weeks when I don't have to go back in for another treatment!
So for now, we'll just try to enjoy a bit of a break.
Friday, July 3, 2015
Five down
We went into cycle #5 on a high. We had just spent a wonderful, relaxing, much needed few days away at the shore and were feeling rested for the first time in months. Only two treatments left - the light at the end of the tunnel was starting to appear.
And then I was nauseous again, and it was quite a blow to the spirits to be dealing with something that we thought was under control.
I'd experienced a minor bit of nausea during the fourth infusion, but I hadn't been feeling great overall at that point and after napping for most of the treatment, it went away. So when I started to feel the same way during the fifth infusion, I figured I would just nap and would feel better shortly. Not so much.
Thankfully this was nothing like the level of nausea I had during the first treatment. I could still function and eat and was never close to throwing up, but I was uncomfortably queasy and it lasted the whole day. I was significantly better the next day but still felt a bit off. It wasn't until the third or fourth day that I really felt fine again.
On a related note, I've started having significant trouble with some smells making me feel sick. The worst smell? The infusion center. I'm sure it's an association issue, because just thinking about it too much makes me start smelling it and feeling queasy. Getting through the last treatment could be rough. There are also some smells around the house that have started getting to me - I've had to change my soap a couple times, and sometimes the dog is too smelly. Fortunately most things still smell fine, and I can usually combat a bad smell by finding a good one. But I'm trying not to rely on any one good smell too much because I don't want it to start being associated with bad things too.
My hair has continued to grow, which is annoying. What didn't fall out initially appears to be incredibly stubborn and doesn't look like it is going anywhere, and I can't tell for sure, but it looks like some of what did fall out might be coming back. But it is still so patchy that it looks pretty bad if it starts to get any length to it, so we have to keep shaving my head. The whole no maintenance thing was supposed to be the one perk to losing my hair ...
My energy levels haven't been great. At this point, it feels like things are a bit more even keel: my bad days aren't quite as bad, but my good days aren't quite as good either. My brain just doesn't work right sometimes. I have been having a lot more trouble sleeping lately. And it is incredibly hard to balance trying to be active when I do feel well so that I can wear myself out enough to be tired but not wear myself out too much that I can't recover.
The biggest news of late is that we had our appointment with a cancer risk genetic counselor this week. Although we don't know anything yet, it was a very informative session. Based on family history and my own experiences, there are a few things she flagged as possibilities. I don't fit all of the criteria for being high risk for any of them, but taken all together, she is recommending testing and is going to see if our insurance will cover it. Hopefully yes because I am extremely interested in having this done, but it is not cheap!
One more. Almost there.
And then I was nauseous again, and it was quite a blow to the spirits to be dealing with something that we thought was under control.
I'd experienced a minor bit of nausea during the fourth infusion, but I hadn't been feeling great overall at that point and after napping for most of the treatment, it went away. So when I started to feel the same way during the fifth infusion, I figured I would just nap and would feel better shortly. Not so much.
Thankfully this was nothing like the level of nausea I had during the first treatment. I could still function and eat and was never close to throwing up, but I was uncomfortably queasy and it lasted the whole day. I was significantly better the next day but still felt a bit off. It wasn't until the third or fourth day that I really felt fine again.
On a related note, I've started having significant trouble with some smells making me feel sick. The worst smell? The infusion center. I'm sure it's an association issue, because just thinking about it too much makes me start smelling it and feeling queasy. Getting through the last treatment could be rough. There are also some smells around the house that have started getting to me - I've had to change my soap a couple times, and sometimes the dog is too smelly. Fortunately most things still smell fine, and I can usually combat a bad smell by finding a good one. But I'm trying not to rely on any one good smell too much because I don't want it to start being associated with bad things too.
My hair has continued to grow, which is annoying. What didn't fall out initially appears to be incredibly stubborn and doesn't look like it is going anywhere, and I can't tell for sure, but it looks like some of what did fall out might be coming back. But it is still so patchy that it looks pretty bad if it starts to get any length to it, so we have to keep shaving my head. The whole no maintenance thing was supposed to be the one perk to losing my hair ...
My energy levels haven't been great. At this point, it feels like things are a bit more even keel: my bad days aren't quite as bad, but my good days aren't quite as good either. My brain just doesn't work right sometimes. I have been having a lot more trouble sleeping lately. And it is incredibly hard to balance trying to be active when I do feel well so that I can wear myself out enough to be tired but not wear myself out too much that I can't recover.
The biggest news of late is that we had our appointment with a cancer risk genetic counselor this week. Although we don't know anything yet, it was a very informative session. Based on family history and my own experiences, there are a few things she flagged as possibilities. I don't fit all of the criteria for being high risk for any of them, but taken all together, she is recommending testing and is going to see if our insurance will cover it. Hopefully yes because I am extremely interested in having this done, but it is not cheap!
One more. Almost there.
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