Thanksgiving is rapidly becoming my favorite holiday, not just for the delicious food or the wonderful company, but for the spirit behind the day. Thanksgiving is celebrated "as a day of giving thanks for the blessing of the harvest and of the preceding year" (thanks Wikipedia). Maybe the timing of my diagnosis has something to do with it, but man, this is sentiment I can really get behind.
If there's one thing this past year+ has taught me, it is that I am truly blessed. My life, for the most part, has been relatively stress-free. But when tough times came and I needed it the most, love and support came pouring in from all directions. There are so many things in my life that bring me joy: my family, my friends, my house, my dog, my town, my hobbies. So today, I will whole-heartedly give thanks for the blessing of the preceding year, warts and all. And even though it's a non-traditional harvest, the love and experiences that I've gathered in the last year are also incredibly deserving of thanks.
Happy Thanksgiving everyone!
Thursday, November 28, 2013
Cancer Quilt - Part 6: The Top
Motivation is a really funny thing. It took me a lot longer than I had anticipated to finish this quilt top because 1) I kept getting distracted by other projects that for various reasons needed to be done sooner, and 2) unlike where we used to live, there isn't a quilt shop just down the street where people will oo and ah over your finished project and encourage you to pick up the next one.
But the top is now done and enough with the words already, right? You want pictures:
I love it, and can't wait to see how it looks once it's all quilted (once I figure out where to take it ...)
But the top is now done and enough with the words already, right? You want pictures:
I recently read an article talking about the warrior language that so often accompanies cancer, and pulled out a quote that pretty perfectly describes my feelings towards my cancer:
"For me, cancer arrived as an unwelcome lodger, parking itself in the back room and demanding attention. ... Eventually the time came to invite my cancer to leave. She has left the place in a bit of a mess, and I'm conscious that she has kept the key. Still I'm hopeful that in due course all I will be left with is the rich memory of time spent with a stranger I never expected to meet."
Although I didn't have the words to say it before, this quilt is how I decided to take care of that unwelcome lodger. There was no battle ground, no war zone - just a part of me that needed a little extra care and attention to get back on the right track.
I love it, and can't wait to see how it looks once it's all quilted (once I figure out where to take it ...)
Saturday, October 26, 2013
At Long Last
Yesterday, I got a phone call from my endo's office and heard words that at times it felt like I would never hear:
"Your TSH is too low, so we need to decreases your dose."
YESSSS!!!!!!! Almost a year later, we're finally getting close (it's only a little bit too low now at 0.14). We're backing my dose down to 225 mcg instead of 250. I suspect that it's still going to take a few more tweaks to get it exactly right, but we're almost there!
"Your TSH is too low, so we need to decreases your dose."
YESSSS!!!!!!! Almost a year later, we're finally getting close (it's only a little bit too low now at 0.14). We're backing my dose down to 225 mcg instead of 250. I suspect that it's still going to take a few more tweaks to get it exactly right, but we're almost there!
Tuesday, October 8, 2013
Two Anniversaries
An open letter to my husband:
Two years ago today, we stood in front of our friends and family and made a promise to be there for each other no matter what.
And I have never been so sure of anything before
Like I am in this moment here with you
One year ago next week, I was diagnosed with cancer.
Now for better or for worse are so much more than only words
This is not how we thought our story would play out.
Despite this, I wouldn't trade the past two years for anything. For sure, there have been lots of lows, and I certainly wish some things had gone differently. But there have also been so many highs, and I've made it through it all with you by my side - and I can't think of a better way to go through life.
And what tomorrow brings only time will tell
But I will stand by you in sickness and in health
As these anniversaries have been approaching, I've been doing a lot of reflecting on our relationship. I am so incredibly grateful for the love that you have shown me, and I am so humbled by the realization that this is what it's all about. Loving and supporting one another through the highs and the lows. Becoming a better person because of the other. Giving so wholly of yourself for the sake of someone else. Throughout it all, this is what matters.
You see these hands you hold will always hold you up
When the strength you have just ain't strong enough
I know that the years to come will have lows as well as highs. But I also know that I'll face everything with you there with me.
And as the years march on like a beating heart
I will live these words 'til death do us part
I love you.
Two years ago today, we stood in front of our friends and family and made a promise to be there for each other no matter what.
And I have never been so sure of anything before
Like I am in this moment here with you
One year ago next week, I was diagnosed with cancer.
Now for better or for worse are so much more than only words
This is not how we thought our story would play out.
Despite this, I wouldn't trade the past two years for anything. For sure, there have been lots of lows, and I certainly wish some things had gone differently. But there have also been so many highs, and I've made it through it all with you by my side - and I can't think of a better way to go through life.
And what tomorrow brings only time will tell
But I will stand by you in sickness and in health
As these anniversaries have been approaching, I've been doing a lot of reflecting on our relationship. I am so incredibly grateful for the love that you have shown me, and I am so humbled by the realization that this is what it's all about. Loving and supporting one another through the highs and the lows. Becoming a better person because of the other. Giving so wholly of yourself for the sake of someone else. Throughout it all, this is what matters.
You see these hands you hold will always hold you up
When the strength you have just ain't strong enough
I know that the years to come will have lows as well as highs. But I also know that I'll face everything with you there with me.
And as the years march on like a beating heart
I will live these words 'til death do us part
I love you.
Thursday, August 29, 2013
Progress
Finally some good news - my TSH is in the single digits!! Even though it's still over 8 and is supposed to be below 0.4, this is a huge improvement over the >20 results I've been getting, so I'm pretty pumped that things are finally going in the right direction. I think that I've noticed a slight difference in how I've felt in the last couple months, which makes me happy because I like to be in tune with what's going on with my body. So it's time for another dose change, but we are hopefully approaching the point where we won't have to mess with my meds all the time.
Wednesday, July 17, 2013
More Of The Same
Well, my TSH still sucks, and I'm now up to a 200 mcg dose. So far, I've been feeling pretty good - no issues with palpitations or anything like that. I'll get checked again in the beginning of September, right around the same time that I'll be having my follow-up ultrasound. This means there shouldn't be a whole lot to report until then.
Looking back at my last post, I realize that I didn't make clear that I think my frustration is actually a good thing at this point. When I was first diagnosed, I intentionally kept my cancer as segregated from the rest of my life as possible. I didn't want to be dealing with other people's reactions as well as trying to deal with my own, and I wanted to keep things as normal as I could. As I've become more comfortable with my own story, I don't mind talking about it anymore. And now, it often seems kind of weird that most people don't know about this huge thing that happened in my life. So I think being frustrated sometimes that things are a bit disjointed is actually just a sign of how far I've come.
Looking back at my last post, I realize that I didn't make clear that I think my frustration is actually a good thing at this point. When I was first diagnosed, I intentionally kept my cancer as segregated from the rest of my life as possible. I didn't want to be dealing with other people's reactions as well as trying to deal with my own, and I wanted to keep things as normal as I could. As I've become more comfortable with my own story, I don't mind talking about it anymore. And now, it often seems kind of weird that most people don't know about this huge thing that happened in my life. So I think being frustrated sometimes that things are a bit disjointed is actually just a sign of how far I've come.
Friday, June 21, 2013
A Double Life
At times I feel like I have two completely disjointed lives. There's the happy life of the girl in her mid-twenties with an amazing husband, a gorgeous house, a good job, and fantastic friends. And then there's the other side, with the stress of an illness and everything that comes with it, like dealing with medication problems and more "probably nothing" test results. It's sometimes hard to deal with how I am simultaneously thrilled with life and pissed off at it at the same time.
A few weeks ago, I had my blood work done to check my TSH again, and was extremely frustrated to find out that it hadn't gone down at all since the last dose change. (That sentence sums up several days of stress and angry conversations with the nurses for leaving voicemails on the wrong phone number, some productive discussions with my endo, and an expensive repeat blood draw at an out of network lab to verify that my levels are in fact really that bad.) I had been on a generic form of Synthroid, and although that apparently works fine for most people, there is a chance that it doesn't work as well for me. (Side note - everyone else in my support group says that their endos won't let them go on generic because it doesn't work as well ... so I had wanted to ask about that anyway.) So we are trying out the brand name stuff to see if my body handles it differently. Another couple weeks until we find that out.
I also had my first follow-up ultrasound post-thyroidectomy. The treatment plan was that every ~6 months, I'll have a thyroid ultrasound with lymph node mapping done to monitor the results of surgery and RAI and make sure nothing is coming back. I figured that since this was the first one, it would just be to set a baseline and the only thing I would hear back from my doctor was "we'll see what it looks like in 6 months". Of course, that would be much too simple. Instead, he told me that there are a couple things that aren't exactly suspicious but we want to keep an eye on them and check them again in 4 months instead of 6. There's apparently a small lymph node whose shape isn't normal and a nodule (probably just scar tissue) where my thyroid used to be. My doctor reminded me that since the blood work for my antibodies (tumor markers) came back negative (this is good), this is probably not anything to worry about, but given the number of times I've heard that phrase in the last year, it still makes me a little nervous.
I think this dichotomy is my main struggle right now. I can't spend the next four months worrying about whether or not my ultrasound will come back okay, so I have to push it to the side and ignore it. It's actually not terribly hard to do that - despite all of my issues, I feel fine, which makes it easy to pretend that the issues aren't there. But pretending/ignoring then makes it harder to deal with it when the scars (emotional or physical) do show. I think the problem is that at some level, I still haven't accepted that this is what my life is now. I'm definitely getting more comfortable with this being a part of who I am, but every now and then the enormity of having to deal with this for the rest of my life is a bit overwhelming.
The other half of this double life is pretty amazing though. After dealing with my various injuries and illnesses for most of last year, we're finally getting to do some improvements on our house. We're getting a fence put in, we're starting to make a landscaping plan, and we're picking out paint colors, and I'm incredibly excited about all of those things. We had a great time at my sister's wedding a week and a half ago, and *fingers crossed* my best friend might be buying a house in the neighborhood next to ours. Most of the time, I really can't help but smile.
So although things don't always feel "normal", I feel like I'm moving in a good direction, and that maybe sometime in the not too distant future, I won't feel so much like there are two separate parts to my life. It's a work in progress :)
A few weeks ago, I had my blood work done to check my TSH again, and was extremely frustrated to find out that it hadn't gone down at all since the last dose change. (That sentence sums up several days of stress and angry conversations with the nurses for leaving voicemails on the wrong phone number, some productive discussions with my endo, and an expensive repeat blood draw at an out of network lab to verify that my levels are in fact really that bad.) I had been on a generic form of Synthroid, and although that apparently works fine for most people, there is a chance that it doesn't work as well for me. (Side note - everyone else in my support group says that their endos won't let them go on generic because it doesn't work as well ... so I had wanted to ask about that anyway.) So we are trying out the brand name stuff to see if my body handles it differently. Another couple weeks until we find that out.
I also had my first follow-up ultrasound post-thyroidectomy. The treatment plan was that every ~6 months, I'll have a thyroid ultrasound with lymph node mapping done to monitor the results of surgery and RAI and make sure nothing is coming back. I figured that since this was the first one, it would just be to set a baseline and the only thing I would hear back from my doctor was "we'll see what it looks like in 6 months". Of course, that would be much too simple. Instead, he told me that there are a couple things that aren't exactly suspicious but we want to keep an eye on them and check them again in 4 months instead of 6. There's apparently a small lymph node whose shape isn't normal and a nodule (probably just scar tissue) where my thyroid used to be. My doctor reminded me that since the blood work for my antibodies (tumor markers) came back negative (this is good), this is probably not anything to worry about, but given the number of times I've heard that phrase in the last year, it still makes me a little nervous.
I think this dichotomy is my main struggle right now. I can't spend the next four months worrying about whether or not my ultrasound will come back okay, so I have to push it to the side and ignore it. It's actually not terribly hard to do that - despite all of my issues, I feel fine, which makes it easy to pretend that the issues aren't there. But pretending/ignoring then makes it harder to deal with it when the scars (emotional or physical) do show. I think the problem is that at some level, I still haven't accepted that this is what my life is now. I'm definitely getting more comfortable with this being a part of who I am, but every now and then the enormity of having to deal with this for the rest of my life is a bit overwhelming.
The other half of this double life is pretty amazing though. After dealing with my various injuries and illnesses for most of last year, we're finally getting to do some improvements on our house. We're getting a fence put in, we're starting to make a landscaping plan, and we're picking out paint colors, and I'm incredibly excited about all of those things. We had a great time at my sister's wedding a week and a half ago, and *fingers crossed* my best friend might be buying a house in the neighborhood next to ours. Most of the time, I really can't help but smile.
So although things don't always feel "normal", I feel like I'm moving in a good direction, and that maybe sometime in the not too distant future, I won't feel so much like there are two separate parts to my life. It's a work in progress :)
Sunday, June 2, 2013
Relay Recap
Somehow, Relay For Life was already 4 weeks ago. Life has been a little bit busy lately, so I'm only just getting around to posting this recap - oops!
It was my first time participating in the event, so I didn't really know what to expect, but let me just say it was a pretty awesome experience. The weather was absolutely INCREDIBLE, thank goodness, and I had a wonderful time with all my family and friends who came.
That's not to say that everything was perfect. As far as the whole event goes, there were definitely some things that could have been handled better. And as far as having a team goes, we certainly learned a lot in our first time out, and we know how to improve for next year. But the whole event ended up being so significant because I think it was the first time that I really appreciated that people were supporting me. Not only did our local friends and family join in, but we had family drive up from Philly and a friend take a bus from NY just to be with us. They made food for the bake sale, walked at all hours of the night, and brought food for the team to eat. But most importantly, they were there with me, and I was truly touched.
My sister ended up winning the quilt raffle, which is nice, since that means it will be hanging in their house and I'll get to see it from time to time. And I'll get back to work on my own quilt eventually (some other projects have jumped in line...). But for now, I'll leave you with a few pictures from Relay:
Saturday, April 27, 2013
Cancer Quilt - Part 5: Special Relay Edition!
Breaking news - the quilt for Relay is finished!!
This is the first quilt project that I've done completely on my own from start to finish. Is it perfect? Absolutely not. Did I make some mistakes along the way? You bet. But I think it turned out beautifully and I'm extremely proud of it, imperfections and all.
So I will be raffling this baby off at my Relay for Life event on May 4th. If you want to buy some raffle tickets ($2 each, or 3 for $5), let me know!!
This is the first quilt project that I've done completely on my own from start to finish. Is it perfect? Absolutely not. Did I make some mistakes along the way? You bet. But I think it turned out beautifully and I'm extremely proud of it, imperfections and all.
So I will be raffling this baby off at my Relay for Life event on May 4th. If you want to buy some raffle tickets ($2 each, or 3 for $5), let me know!!
Tuesday, April 2, 2013
Cancer Quilt - Part 4
Oh no - my 9 patches have disappeared!! :) They got cut up into quarters and made a stack like this:
But don't worry - the extra blocks aren't going to waste! They're getting turned into a small lap quilt/wall hanging that I'm going to raffle off as a fundraiser at Relay for Life in May. (Shameless plug: I'm doing Relay for Life. If you want to support me, you can join my team and come walk with us, you can make a donation to me or my team, or you can purchase raffle tickets and try to win this little beauty. Tickets are $2 each, or you can get 3 tickets for $5. Let me know!)
The larger quilt is on hold until I finish up the small quilt. This is my first foray into actually quilting a project myself. It's nothing fancy, but so far it's looking pretty nice. Stay tuned :)
After they were cut, I laid them all out on the floor and shifted things around until I liked the balance of color and pattern. I intentionally made more squares than I would need because I like having extra during the shuffling - that way, I don't have to use a block if I feel like it just isn't working.
The larger quilt is on hold until I finish up the small quilt. This is my first foray into actually quilting a project myself. It's nothing fancy, but so far it's looking pretty nice. Stay tuned :)
Monday, April 1, 2013
Life After Cancer
I’ve been terribly lazy about blogging lately, mainly because I’ve still been trying to process some things. And if I can’t get my thoughts straight in my head, how in the world will I be able to convey them well here? I think that I’ve been having a bit of an existential crisis, which I can only assume is perfectly normal in situations like this. So there’s a lot that I’ve been trying to wrap my head around, and I think I’ve maybe finally figured some things out.
I do believe that everything happens for a reason, and as hard as it may be to believe, I think getting cancer has been good for me in a lot of ways. I’ve learned a lot about myself in the process and discovered a level of strength and resilience that I didn’t know I had. I learned a lot about my husband and about our relationship, and I think that we are closer than we were before. I learned that sometimes, when you share your weaknesses with someone else, you both become stronger as a result. Most of the time, I'm so much more grateful for what I have now. Most of the time, I feel like I am more present and better at living in the moment than ever before.
As far as a medical update goes, my TSH level is still too high, so we’re trying to get my synthroid dose high enough to get the TSH suppressed without giving me heart palpitations again. But despite my level not going down, my energy has been good overall, and other than that, there’s not much to report.
At this point, I am a cancer survivor – although I don't have the all clear to be downgraded to the low risk category yet, I am not considered to have cancer anymore. But I’m having trouble with the phrase “I had cancer”. There's a level of finality with the word 'had' that I'm not yet comfortable with. To me, saying "I had cancer" sounds like it was a long time ago, that it's all over, that everything is fine now, and that everything is back to the way it was. But the reality is that it's never all over and life will never be the way it was before (see "Lanes"). There's daily medication, regular blood work, and additional scans to make sure the cancer hasn't come back. But the bigger piece is the emotional struggle that doesn’t just go away because I’m now “cancer-free”.
I do believe that everything happens for a reason, and as hard as it may be to believe, I think getting cancer has been good for me in a lot of ways. I’ve learned a lot about myself in the process and discovered a level of strength and resilience that I didn’t know I had. I learned a lot about my husband and about our relationship, and I think that we are closer than we were before. I learned that sometimes, when you share your weaknesses with someone else, you both become stronger as a result. Most of the time, I'm so much more grateful for what I have now. Most of the time, I feel like I am more present and better at living in the moment than ever before.
But truth be told, there are still times when I don’t feel like myself at all: when I feel like the life that I was living and the future I was meant to have were stolen away and I can never get them back. There are still times when I get very angry, and there are still times when I get very upset. And sometimes, those moments of anger and frustration hit me out of the blue.
My brother-in-law got married this past weekend. It was a beautiful wedding, and I couldn’t be happier for him and his wife. But I got very emotional listening to their wedding vows, feeling the intensity of the promises made and knowing that just a year and a half ago, my husband and I stood before our friends and family and made those same promises – to be faithful and true no matter what trials or tragedies should come our way, to love and honor each other in sickness and in health. Part of me wants nothing more than to be able to go back to that time, when those promises referred only to hypothetical situations and weren’t already a reality. Part of me is jealous of their happiness, unchallenged by illness. Part of me says “why couldn’t that still be us?”
Another thing I’ve been struggling with is work. For the most part, I enjoy my job. I like working in the lab and I appreciate having a job that lets me be fairly active. But what I do really holds no meaning for me (synthesizing polymers? meh), and I’m finding that the topics and projects I get most passionate about are a far cry removed from chemistry. So I wonder if I’m just wasting my time.
At the same time, I actually love where my life is overall. I just feel like I have a bunch of pieces that I need to put together but I can't seem to figure out how they fit. I'm just struggling with reconciling who I used to be with who I am now, with merging the past and present.
I recently received some beautiful words of advice regarding my current identity crisis from a very dear friend. He told me “All I can say to you is realize who and what you are. You are not a chemist - that is your job! You are a wife, daughter, sister, friend and countless other things. Do your job. Take pride in your work. More importantly find joy in all those things that you are, because that is what makes each day worthwhile and a reason to get out of bed in the morning.” Some of the best advice I think I've ever received.
So I think what I’ve figured out is that it’s okay that I don’t have everything figured out. That I need to stop trying to have it all together all the time. That it’s going to take some time to get used to the new normal. That it probably won't be easy and I'll probably keep struggling for a while. That even though I sometimes get angry or upset or frustrated, it doesn’t mean that I’m not happy. And that all of that is okay. So I'll keep moving forward, one step at a time, one day at a time. At some point, maybe the pieces will all fall into place. Until then, I'll try to remember that through all of this, I have been braver than I expected and that I can continue to be so.
Friday, February 1, 2013
There's A First Time For Everything
Yesterday was my first trip to the ER. Needless to say, this past week did not go as well as I had hoped.
After how good I felt last Wednesday and Thursday, I had started thinking that maybe I was going to get lucky and get through treatment with no real side effects. And then I woke up on Friday with a sore neck, a racing heart, and a tight chest. The neck soreness wasn't unexpected, but I hadn't read about heart palpitations and strained breathing in the main RAI side effets. It took me until the afternoon to decide that my symptoms weren't going away or getting any better, so I called my endo. His initial concern was that based on my symptoms, I might have a blood clot in my lungs, although that was highly unlikely. He wanted me to go to the ER to get a chest xray to make sure. After some discussion, we decided that it was most likely just the result of too much thyroid stimulation in combination with a too high synthroid dose. The plan was to skip a day of my synthroid and then start up again at a lower dose, and to go to the ER if things got worse.
On Saturday, the tightness in my chest went away, although I was still feeling a bit winded, and on Sunday, my heart rate started to come back down a little, but it was still higher than normal. I did some work from home on Monday and decided that I felt well enough to go in to work for part of the day on Tuesday, even though things weren't fully back to normal. By Tuesday evening, I was back to feeling almost as bad as I had the Friday before. After spending Wednesday at home resting, I wasn't feeling any better - I felt winded just sitting on the couch, and I was feeling jittery and anxious. After calling my endo again Thursday morning, I was on my way to the ER to make sure there wasn't something more serious wrong.
All things considered, the whole ER experience went pretty well. We got there around 11 and checked in. I made sure to be clear that my doctor (from the same health network) had sent me over - I don't know if that makes a difference, but I figured a little name dropping never hurt! We sat down in the waiting room and I had barely even started reading my book when they called me back for triage. They did an EKG and then sent us back out to the waiting room. Only a few pages in my book later, I got called back for triage part two, where they took my vitals and I had to sign some papers and answer some questions. (Here's a tip for all health care workers, but for ER workers in particular: "Do you have any medical issues?" is not a very good question. Besides being much too broad, I obviously do if I'm at the ER!) I got braceleted and sent back out to the waiting room. A few minutes later, they were ready for me and took me back to my "room" (aka bed in the hallway because all the rooms were full). I had to have yet another pregnancy test, and then they took some blood (to check my thyroid levels and to test for blood clots) and put in a just-in-case IV port. They took a couple chest xrays and then I talked with the doctor for a little while. He called my endo to make sure that they were on the same page, and after getting the test results back and seeing that everything was fine, they decided that the best course forward would be to put me on beta blockers until we get my hormone levels straightened out. They gave me a dose while I was there and the difference it made was incredible - I started to feel calm very quickly. Once the doctor was satisfied that I was tolerating the new medication, I got my discharge orders and we left around 2.
I feel so much better today. I'm still fairly tired, but I haven't been sleeping well for a while so I've got some catching up to do. But my heart rate is back down to normal, or maybe even a tad lower, I don't have to strain to breathe, and I don't get winded walking from the couch to the kitchen - all major improvements! They can't say for sure why I'm having all of these problems, since my thyroid levels came back fine, but my endo suspects it's just lingering effects from treatment (because you're trying so hard to make sure the thyroid cells are stimulated and ready for the radiation, you can actually overstimulate them and cause yourself to be hyperthyroid).
The news that got lost in the midst of all of this was that I had my follow up scan Wednesday morning, and everything looked good! The scan only lit up in the areas where it should, which means there was no sign that the cancer had spread. If I hadn't been so agitated and stressed by my heart issues, I would have been more excited about this at the time, but I'm very happy about it now. For now, there isn't anything major on the horizon that I have to get through. Sure, we still have to get my medication levels worked out, but I can finally start adjusting to the new normal.
After how good I felt last Wednesday and Thursday, I had started thinking that maybe I was going to get lucky and get through treatment with no real side effects. And then I woke up on Friday with a sore neck, a racing heart, and a tight chest. The neck soreness wasn't unexpected, but I hadn't read about heart palpitations and strained breathing in the main RAI side effets. It took me until the afternoon to decide that my symptoms weren't going away or getting any better, so I called my endo. His initial concern was that based on my symptoms, I might have a blood clot in my lungs, although that was highly unlikely. He wanted me to go to the ER to get a chest xray to make sure. After some discussion, we decided that it was most likely just the result of too much thyroid stimulation in combination with a too high synthroid dose. The plan was to skip a day of my synthroid and then start up again at a lower dose, and to go to the ER if things got worse.
On Saturday, the tightness in my chest went away, although I was still feeling a bit winded, and on Sunday, my heart rate started to come back down a little, but it was still higher than normal. I did some work from home on Monday and decided that I felt well enough to go in to work for part of the day on Tuesday, even though things weren't fully back to normal. By Tuesday evening, I was back to feeling almost as bad as I had the Friday before. After spending Wednesday at home resting, I wasn't feeling any better - I felt winded just sitting on the couch, and I was feeling jittery and anxious. After calling my endo again Thursday morning, I was on my way to the ER to make sure there wasn't something more serious wrong.
All things considered, the whole ER experience went pretty well. We got there around 11 and checked in. I made sure to be clear that my doctor (from the same health network) had sent me over - I don't know if that makes a difference, but I figured a little name dropping never hurt! We sat down in the waiting room and I had barely even started reading my book when they called me back for triage. They did an EKG and then sent us back out to the waiting room. Only a few pages in my book later, I got called back for triage part two, where they took my vitals and I had to sign some papers and answer some questions. (Here's a tip for all health care workers, but for ER workers in particular: "Do you have any medical issues?" is not a very good question. Besides being much too broad, I obviously do if I'm at the ER!) I got braceleted and sent back out to the waiting room. A few minutes later, they were ready for me and took me back to my "room" (aka bed in the hallway because all the rooms were full). I had to have yet another pregnancy test, and then they took some blood (to check my thyroid levels and to test for blood clots) and put in a just-in-case IV port. They took a couple chest xrays and then I talked with the doctor for a little while. He called my endo to make sure that they were on the same page, and after getting the test results back and seeing that everything was fine, they decided that the best course forward would be to put me on beta blockers until we get my hormone levels straightened out. They gave me a dose while I was there and the difference it made was incredible - I started to feel calm very quickly. Once the doctor was satisfied that I was tolerating the new medication, I got my discharge orders and we left around 2.
I feel so much better today. I'm still fairly tired, but I haven't been sleeping well for a while so I've got some catching up to do. But my heart rate is back down to normal, or maybe even a tad lower, I don't have to strain to breathe, and I don't get winded walking from the couch to the kitchen - all major improvements! They can't say for sure why I'm having all of these problems, since my thyroid levels came back fine, but my endo suspects it's just lingering effects from treatment (because you're trying so hard to make sure the thyroid cells are stimulated and ready for the radiation, you can actually overstimulate them and cause yourself to be hyperthyroid).
The news that got lost in the midst of all of this was that I had my follow up scan Wednesday morning, and everything looked good! The scan only lit up in the areas where it should, which means there was no sign that the cancer had spread. If I hadn't been so agitated and stressed by my heart issues, I would have been more excited about this at the time, but I'm very happy about it now. For now, there isn't anything major on the horizon that I have to get through. Sure, we still have to get my medication levels worked out, but I can finally start adjusting to the new normal.
Thursday, January 24, 2013
So Far, So Good
It's been over 24 hours of being radioactive, and things have been going pretty well.
The biggest issue ended up revolving around a pregnancy test. They won't do the treatment if you're pregnant, so you have to have a pregnancy test, but it has to be done within a certain number of hours of when you would get the radiation. Since I was getting my dose on Wednesday, this meant that my test needed to be Sunday or later. I also had to have a pregnancy test done before they would administer my Thyrogen injections, which started on Monday. So I really needed to have the test done on Sunday, but the lab where I needed to go is closed on Sundays. So I went on Saturday so I could get my injections, fully aware that this meant that when I went for my pre-scan on Tuesday, they would need to do another test.
I got my injections Monday and Tuesday mornings without any trouble, and when I arrived at the nuclear medicine department Tuesday afternoon, I told them that I needed to have another pregnancy test done since I wasn't able to get it within the window they wanted. The nurses/technicians didn't want to have to wait for the results of blood work, so they went to talk to a couple people higher up. One guy (who I had spoken to on the phone about the scheduling and timing) got very snippy about it, complaining that I hadn't followed his directions even though he "explained it all very clearly on the phone". I got annoyed because he had told me that if I got the test before Sunday, I'd have to get another one on Tuesday and that's what I was ready to do! After much discussion with people at various levels up to the radiation safety officer, they decided that it would be acceptable to document that in addition to my negative test from Saturday, I was providing verbal confirmation that I could not have become pregnant since then.
After taking the tracer dose and getting a full body scan, I went home. On Wednesday morning, I got another full body scan done and they measured my uptake level (4%). Based on their measurements, they calculated out a dose of 100 mCi. The pills are made at a radiopharmacy in a neighboring town, so they had to call it in and wait for it to be driven over. During the wait, I had a talk with a doctor and regarding the medical aspects and implications of the treatment and a talk with a physicist regarding all the safety precautions that I'd need to follow because for a short time, I'd be spraying radiation around "like an open x-ray tube". After the pill showed up, 3 people had to watch and sign off that I had taken it, and then I was sent home.
So for a few days, I'm camped out at the other end of the house from my husband, with my own bedroom and bathroom. Since the first couple days is when the most excretion occurs, I've been mainly keeping to my room so as to not contaminate the rest of the house, making quick trips to the kitchen whenever I need food. I've mostly been sleeping and reading, with some sudoku thrown in for variety. I've felt mostly normal too, which is good. I felt like I had a bad cold when I woke up (sore throat, stuffy, achy, etc.) but that's mostly gone now. My stomach has also felt a little on edge on and off throughout the day - not nauseous, but more like ... tentative. Either could be treatment related or not. I think the stomach might have more to do with the fact that I was allowed to go off the diet today and so I had dairy products for the first time in almost 4 weeks. My stomach might not approve of that, but my taste buds sure did!
I go back for a follow-up scan on the 30th, and I have to get my thyroglobulin and TSH levels checked next week as well. And then we'll see how things go from there!
The biggest issue ended up revolving around a pregnancy test. They won't do the treatment if you're pregnant, so you have to have a pregnancy test, but it has to be done within a certain number of hours of when you would get the radiation. Since I was getting my dose on Wednesday, this meant that my test needed to be Sunday or later. I also had to have a pregnancy test done before they would administer my Thyrogen injections, which started on Monday. So I really needed to have the test done on Sunday, but the lab where I needed to go is closed on Sundays. So I went on Saturday so I could get my injections, fully aware that this meant that when I went for my pre-scan on Tuesday, they would need to do another test.
I got my injections Monday and Tuesday mornings without any trouble, and when I arrived at the nuclear medicine department Tuesday afternoon, I told them that I needed to have another pregnancy test done since I wasn't able to get it within the window they wanted. The nurses/technicians didn't want to have to wait for the results of blood work, so they went to talk to a couple people higher up. One guy (who I had spoken to on the phone about the scheduling and timing) got very snippy about it, complaining that I hadn't followed his directions even though he "explained it all very clearly on the phone". I got annoyed because he had told me that if I got the test before Sunday, I'd have to get another one on Tuesday and that's what I was ready to do! After much discussion with people at various levels up to the radiation safety officer, they decided that it would be acceptable to document that in addition to my negative test from Saturday, I was providing verbal confirmation that I could not have become pregnant since then.
After taking the tracer dose and getting a full body scan, I went home. On Wednesday morning, I got another full body scan done and they measured my uptake level (4%). Based on their measurements, they calculated out a dose of 100 mCi. The pills are made at a radiopharmacy in a neighboring town, so they had to call it in and wait for it to be driven over. During the wait, I had a talk with a doctor and regarding the medical aspects and implications of the treatment and a talk with a physicist regarding all the safety precautions that I'd need to follow because for a short time, I'd be spraying radiation around "like an open x-ray tube". After the pill showed up, 3 people had to watch and sign off that I had taken it, and then I was sent home.
So for a few days, I'm camped out at the other end of the house from my husband, with my own bedroom and bathroom. Since the first couple days is when the most excretion occurs, I've been mainly keeping to my room so as to not contaminate the rest of the house, making quick trips to the kitchen whenever I need food. I've mostly been sleeping and reading, with some sudoku thrown in for variety. I've felt mostly normal too, which is good. I felt like I had a bad cold when I woke up (sore throat, stuffy, achy, etc.) but that's mostly gone now. My stomach has also felt a little on edge on and off throughout the day - not nauseous, but more like ... tentative. Either could be treatment related or not. I think the stomach might have more to do with the fact that I was allowed to go off the diet today and so I had dairy products for the first time in almost 4 weeks. My stomach might not approve of that, but my taste buds sure did!
I go back for a follow-up scan on the 30th, and I have to get my thyroglobulin and TSH levels checked next week as well. And then we'll see how things go from there!
Tuesday, January 15, 2013
Approaching RAI
Before Christmas, the plan that I made with my endo's office was that I would start my low iodine diet on January 1st and then call the office on January 2nd to get my Thyrogen prescription (they couldn't send it in earlier because of my insurance change). Once we knew if/when I'd be able to get the Thyrogen, we'd set a date for the actual RAI treatment.
So I started my low iodine diet on the1st as planned ... only counting the part of the 1st after having gone to bed from the night before :) On the 2nd, I called my endo's office and they sent the prescription over to my new pharmacy. On the 3rd, I called to pharmacy to check if they would be able to fill it. At the end of the day on the 3rd, I had my Thyrogen at home, waiting in the fridge - hooray! Then on the 4th, I called my endo again and we set a date: RAI treatment on January 23rd.
On the 21st and 22nd, I go to my endo's office in the morning to get the Thyrogen shots (one each day) to up my TSH levels. Then in the afternoon on the 22nd, I go to the nuclear medicine department to get a small, diagnostic dose of RAI and have a preliminary scan done. I go back and get another scan the morning of the 23rd, and they use the information from both of those scans to calculate the size of the treatment dose. By lunchtime on the 23rd, I should have received my radiation and be in my isolation period (about 4-5 days, depending on the size of the dose). A week later, on the 30th, I go back for another scan.
How things are going so far: the low iodine diet is both a fun challenge and a huge annoyance. It makes meal planning pretty complicated, but I've made and tried things that I probably never would have otherwise. I've roasted my own chick peas and red peppers, tried out a new pancake recipe, and made my own almond milk and tortillas. I found a really tasty white bean dip recipe and modified a different recipe for a tomato and acorn squash pasta sauce. Plus I've tried out several salad dressing recipes, the top two so far being a raspberry vinaigrette and a honey-tahini dressing. But it's not simple to figure out what to eat and when: trying to get enough protein at various meals and making sure I have enough snacks to get me through the day has required a bit of creativity. I've discovered that some things I thought were good snacks are not - I seem to get headaches after eating raw broccoli, and possibly after parsley too. Fortunately, I don't have to follow this diet for too much longer, and I can't wait to eat a bunch of cheese! (If you want to learn more about all of the dietary restrictions, read this)
So I started my low iodine diet on the1st as planned ... only counting the part of the 1st after having gone to bed from the night before :) On the 2nd, I called my endo's office and they sent the prescription over to my new pharmacy. On the 3rd, I called to pharmacy to check if they would be able to fill it. At the end of the day on the 3rd, I had my Thyrogen at home, waiting in the fridge - hooray! Then on the 4th, I called my endo again and we set a date: RAI treatment on January 23rd.
On the 21st and 22nd, I go to my endo's office in the morning to get the Thyrogen shots (one each day) to up my TSH levels. Then in the afternoon on the 22nd, I go to the nuclear medicine department to get a small, diagnostic dose of RAI and have a preliminary scan done. I go back and get another scan the morning of the 23rd, and they use the information from both of those scans to calculate the size of the treatment dose. By lunchtime on the 23rd, I should have received my radiation and be in my isolation period (about 4-5 days, depending on the size of the dose). A week later, on the 30th, I go back for another scan.
How things are going so far: the low iodine diet is both a fun challenge and a huge annoyance. It makes meal planning pretty complicated, but I've made and tried things that I probably never would have otherwise. I've roasted my own chick peas and red peppers, tried out a new pancake recipe, and made my own almond milk and tortillas. I found a really tasty white bean dip recipe and modified a different recipe for a tomato and acorn squash pasta sauce. Plus I've tried out several salad dressing recipes, the top two so far being a raspberry vinaigrette and a honey-tahini dressing. But it's not simple to figure out what to eat and when: trying to get enough protein at various meals and making sure I have enough snacks to get me through the day has required a bit of creativity. I've discovered that some things I thought were good snacks are not - I seem to get headaches after eating raw broccoli, and possibly after parsley too. Fortunately, I don't have to follow this diet for too much longer, and I can't wait to eat a bunch of cheese! (If you want to learn more about all of the dietary restrictions, read this)
Monday, January 14, 2013
If I'm Being Honest
Up until now, the hardest post for me was the very first one. I wanted that first post to tell people what was going on and to let them understand some of what I was feeling. It needed to be serious without being too somber, informative without being overwhelming. It took me a long time to get the right words, to convey the right sentiments. It was hard to get all my thoughts sorted out and presented the way I wanted them.
Even though I want all of the same things from this post as from the first one, this post is going to be much more difficult to write and share. It's much easier to tell people that things are "pretty good" than to try and explain exactly how complicated they really are. It's much easier to just put on a brave face and try to push through than to be vulnerable and let the world see that I don't really have it all together. But part of the reason for keeping this blog was to keep everyone informed of how things were going and of how I am doing, and if I leave this out, I'm not sharing the whole picture. So as hard as it is to share this side, I'm writing this to complete the picture. I don't want everyone to think I'm handling everything beautifully 100% of the time; although I'm doing my very best and it's a wonderful picture to have of the situation, it isn't at all the truth.
For the most part, things really have been pretty good. For the most part, I've been coping very well. For the most part, I feel lucky and appreciate how good I actually have it. But I think in a lot of ways, I've focused so much on the positives that I haven't fully processed and dealt with the negatives, and I think that all of the emotional turmoil of the last 5 months finally caught up with me. It was a rough weekend, complete with two separate meltdowns, and here's what I sifted out of it all:
I realized that I'm angry at this whole situation, because frankly, it just isn't fair. I live a pretty healthy life and try to take good care of myself - I exercise, try to eat right, to get enough sleep, but it wasn't good enough. It feels like I did everything I could but I got sick anyway and it sucks. It really sucks. I have to take medication every day for the rest of my life or my body will literally shut down. I have to have radiation treatment that will increase my chances of getting a different cancer in order to decrease the chances of this one coming back. I have to have regular blood work and doctor's appointments to make sure we're managing my hormone levels and to watch out for the cancer coming back. I'm too young to be dealing with all this.
I'm anxious about the radiation treatment. It's about as minimally invasive as treatment could be, but people still experience a whole gamut of side effects, and I'll have to be isolated from everyone for a few days. That means that my husband, who has been my unwavering rock throughout this whole ordeal, will have to stay at least 6 feet away from me during that time. If I get upset or feel overwhelmed, I can't go cry on his shoulder. And even if I get sick from the radiation and don't feel well, I'll have to deal with it by myself.
I hate not having a better support network at work. Most days, I just want to stay home. I have some fantastic friends that I met at work, but they're in different buildings and we don't really work together at all. Most of the people with whom I do interact on a daily basis don't know what's going on, but I don't know them well enough to want to tell them. I miss my former coworkers like crazy.
I go to a support group meeting once a month, but I don't know the other people in the group very well yet, and that meeting is the only time I see them - that doesn't do a whole lot to support me the rest of the month. Everyone I've met there is really nice and I'm sure would be perfectly willing to meet and talk with me at other times, but I'm not very good at admitting that I need help.
This pre-treatment diet is a pain in the butt. Combined with my gluten-free needs, it makes figuring out meals anything but simple. I can't grab a snack from the cafe or go out to eat with friends - everything has to be planned out. And I've been struggling with headaches that seem to be related to the diet changes.
I'm pretty worn out, and I just wish I could be normal again.
Even though I want all of the same things from this post as from the first one, this post is going to be much more difficult to write and share. It's much easier to tell people that things are "pretty good" than to try and explain exactly how complicated they really are. It's much easier to just put on a brave face and try to push through than to be vulnerable and let the world see that I don't really have it all together. But part of the reason for keeping this blog was to keep everyone informed of how things were going and of how I am doing, and if I leave this out, I'm not sharing the whole picture. So as hard as it is to share this side, I'm writing this to complete the picture. I don't want everyone to think I'm handling everything beautifully 100% of the time; although I'm doing my very best and it's a wonderful picture to have of the situation, it isn't at all the truth.
For the most part, things really have been pretty good. For the most part, I've been coping very well. For the most part, I feel lucky and appreciate how good I actually have it. But I think in a lot of ways, I've focused so much on the positives that I haven't fully processed and dealt with the negatives, and I think that all of the emotional turmoil of the last 5 months finally caught up with me. It was a rough weekend, complete with two separate meltdowns, and here's what I sifted out of it all:
I realized that I'm angry at this whole situation, because frankly, it just isn't fair. I live a pretty healthy life and try to take good care of myself - I exercise, try to eat right, to get enough sleep, but it wasn't good enough. It feels like I did everything I could but I got sick anyway and it sucks. It really sucks. I have to take medication every day for the rest of my life or my body will literally shut down. I have to have radiation treatment that will increase my chances of getting a different cancer in order to decrease the chances of this one coming back. I have to have regular blood work and doctor's appointments to make sure we're managing my hormone levels and to watch out for the cancer coming back. I'm too young to be dealing with all this.
I'm anxious about the radiation treatment. It's about as minimally invasive as treatment could be, but people still experience a whole gamut of side effects, and I'll have to be isolated from everyone for a few days. That means that my husband, who has been my unwavering rock throughout this whole ordeal, will have to stay at least 6 feet away from me during that time. If I get upset or feel overwhelmed, I can't go cry on his shoulder. And even if I get sick from the radiation and don't feel well, I'll have to deal with it by myself.
I hate not having a better support network at work. Most days, I just want to stay home. I have some fantastic friends that I met at work, but they're in different buildings and we don't really work together at all. Most of the people with whom I do interact on a daily basis don't know what's going on, but I don't know them well enough to want to tell them. I miss my former coworkers like crazy.
I go to a support group meeting once a month, but I don't know the other people in the group very well yet, and that meeting is the only time I see them - that doesn't do a whole lot to support me the rest of the month. Everyone I've met there is really nice and I'm sure would be perfectly willing to meet and talk with me at other times, but I'm not very good at admitting that I need help.
This pre-treatment diet is a pain in the butt. Combined with my gluten-free needs, it makes figuring out meals anything but simple. I can't grab a snack from the cafe or go out to eat with friends - everything has to be planned out. And I've been struggling with headaches that seem to be related to the diet changes.
I'm pretty worn out, and I just wish I could be normal again.
Friday, January 11, 2013
Merry Christmas and Happy New Year!
On the first day of Christmas, my true love gave to me ...
a new thyroid!
We had a lovely Christmas, full of many firsts: our first in our house, our first time hosting, and my first without a thyroid (well, until I opened my presents!). Everything went well and we had a wonderful time. Then we spent New Year's Eve eating, drinking, and being merry with two of my favorite people - best start to the year in a long time :) I was completely on vacation: no work, no doctor's appointments, no (extra) dietary restrictions (yet), just some quality relaxing time. And it was awesome.
So a belated Happy New Year to everyone - may your year turn out to be everything you hoped it would be!
a new thyroid!
We had a lovely Christmas, full of many firsts: our first in our house, our first time hosting, and my first without a thyroid (well, until I opened my presents!). Everything went well and we had a wonderful time. Then we spent New Year's Eve eating, drinking, and being merry with two of my favorite people - best start to the year in a long time :) I was completely on vacation: no work, no doctor's appointments, no (extra) dietary restrictions (yet), just some quality relaxing time. And it was awesome.
So a belated Happy New Year to everyone - may your year turn out to be everything you hoped it would be!
Tuesday, January 1, 2013
Cancer Quilt - Part 3
The long-promised quilt update is here! Although I've been spending most of my time on other projects, there has been a bit of progress in the quilt's status. Since the last post where all of the fabrics were cut, all of the nine-patches have been assembled. I started by laying all of the squares out on the floor to make sure I liked the arrangement. (Just ignore the mess - nothing is in the same place as it was in this picture anyway!)
I didn't want any of my nine-patches to be the same, and I wanted to make sure the same fabrics weren't always next to each other. After I was happy with what I had, I sewed them all together.
The blocks have all been pressed and now they need to be trimmed and then each cut into four pieces.
I don't plan on working much on this quilt in the next couple weeks because I got our wedding quilt back from the shop a couple weeks ago and now I need to finish it so we can hang it up! But I figure I should have lots of time for it and other projects while I'm in isolation :)
I didn't want any of my nine-patches to be the same, and I wanted to make sure the same fabrics weren't always next to each other. After I was happy with what I had, I sewed them all together.
The blocks have all been pressed and now they need to be trimmed and then each cut into four pieces.
I don't plan on working much on this quilt in the next couple weeks because I got our wedding quilt back from the shop a couple weeks ago and now I need to finish it so we can hang it up! But I figure I should have lots of time for it and other projects while I'm in isolation :)
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