I'm so sorry that I haven't been better about keeping everyone up to date with this blog. Life has been very busy the past few months--the good kind of busy.
In brief: my latest PET scan (this past Thursday) still showed abnormal spots in my thymus, but the CT scan looked clean. I'll have to repeat both the PET and CT scans in 8 weeks. As more time passes, the doctors feel more confident that the abnormalities in the PET scan do not represent residual lymphoma. So in this case, only time will tell...
My hope is to update this blog with everything that has happened since October. I have a lot to say about life post treatment and how it feels to be in a frequent scan cycle limbo. For now though, rest assured that we are all doing well and that, quite frankly, life couldn't be better.
Thursday, January 17, 2013
Thursday, October 4, 2012
The PET scan still shows activity
Too tired to type a ton right now, but I just wanted to update everyone that I had my fourth post-treatment PET scan today, and it still showed the same activity as the previous three PET scans. So...since the activity is the same, the doctors are leaning towards the activity being caused by my body's response to the chemo and not necessarily residual lymphoma. Without the activity disappearing (or at least decreasing) though, they can't be sure it's not a small amount of cancerous cells left over.
The decision: wait another six weeks and rescan....
I'll type more about how we're doing in post treatment limbo soon!
The decision: wait another six weeks and rescan....
I'll type more about how we're doing in post treatment limbo soon!
Friday, September 14, 2012
The Waiting Game
I know it's been too long since I last updated this blog. The past two months have been an emotional roller coaster.
After my first post-treatment PET scan, I had a relatively easy four weeks of waiting. I was so confident that the activity showing up in the PET was inflammation and that the second PET would show little to no activity that I didn't mentally prepare for any other news. On August 2, I received that unexpected news:
After spending my required hour incubating in radioactive glucose and inching my way through the scanner, we happily walked into the oncology clinic--totally unaware that my doctors were stewing over a very confusing scan result. I sat in the paper-covered chair. Jason sat to my left, probably thinking about where we would have our celebration lunch.
After the oncology fellow asked the standard questions and pulled my information up on the computer, he left the room to get my oncology team. I knew something was wrong when Jason went slightly pale as he squinted at the computer screen across the room. At that point, the rest of the meeting became a blur.
The doctors entered the room and explained that my PET scan showed a slight increase in activity compared to my first post-treatment scan. The radiologist also noted that the area of activity appeared as if it had increased in size. My doctors were worried that I still had residual lymphoma and might need radiation.
Some background: In this clinical trial, only 2 out of 48 people needed radiation. For the first time in this entire ordeal, I thought "why me." Honestly, not once did those two little words cross my mind when I was diagnosed back in February, or as I lost my hair from chemo, or as I said goodbye to my period for potentially the last time. I just never questioned why I was one of the unlucky few to get lymphoma.
As I write this post, I'm still not sure why I jumped to the feelings of "why me." I guess I was so confident in this treatment plan after my near-perfect mid-treatment scan that I never accounted for the possibility that I might need radiation.
The doctors scheduled a CT scan for the following week to determine if the area with PET activity showed any abnormal tissues. I'm not going to lie, those six days of waiting were really hard. At one point, I just felt like I completely lost hope. Radiation can be very successful, but as you start checking off the boxes of treatment options, it gets a lot scarier.
When I reached that low point, I called my coordinating nurse. I know that a lot of people would just want to hear someone say, "oh, I'm sure it's nothing," but I needed to hear exactly what the doctors were thinking. I really appreciate how honest she was. She explained that the doctors were leaning towards residual lymphoma, but that we definitely couldn't jump to conclusions without seeing the CT scan. She also reassured me that--if it came to it--the NIH radiation oncology team is amazing, and that I'd be in good hands. She also gave my information to the on-call doctor who later called me and spent an hour on the phone going over every possible outcome of the scans and what it would mean for my treatment. Any doctors reading this, there is no way to put into words how much it means to the patient when you spend that kind of time helping us.
After talking to my nurse and doctor, I did feel a lot better. This time, I was mentally prepared for any bad news from the CT scan. THANKFULLY, the CT scan showed no growth or abnormal tissues in the area. The doctor even pulled up my scan to show me exactly what he was looking at and measuring. They decided to wait another 4 weeks to see what would happen in the PET scan over time. Believe me, it's much much easier to wait four weeks after a good scan than 4 days after a bad one!
Fast forward the four weeks: My third post-treatment PET scan still showed activity, although this time it hadn't increased. Since my CT scan a few weeks earlier looked good, and there was no increase in the PET activity, the doctors decided to wait another 4 weeks and repeat the PET and CT scans.
Here I am, waiting for my fourth post-treatment set of scans on October 4th. Jason and I have attempted to get back into the swing of things. We've been attending family events and exploring Washington DC with Zachary. I've started writing again for work, and my hair is even starting to grow back. But even though life is slowly returning to something of a normal, it's completely different than before my diagnosis. I live life in four week increments at the moment, because after four weeks, I have no clue if I'll be cancer free or not.
So, here's to four weeks of enjoying life to the fullest!
After my first post-treatment PET scan, I had a relatively easy four weeks of waiting. I was so confident that the activity showing up in the PET was inflammation and that the second PET would show little to no activity that I didn't mentally prepare for any other news. On August 2, I received that unexpected news:
After spending my required hour incubating in radioactive glucose and inching my way through the scanner, we happily walked into the oncology clinic--totally unaware that my doctors were stewing over a very confusing scan result. I sat in the paper-covered chair. Jason sat to my left, probably thinking about where we would have our celebration lunch.
After the oncology fellow asked the standard questions and pulled my information up on the computer, he left the room to get my oncology team. I knew something was wrong when Jason went slightly pale as he squinted at the computer screen across the room. At that point, the rest of the meeting became a blur.
The doctors entered the room and explained that my PET scan showed a slight increase in activity compared to my first post-treatment scan. The radiologist also noted that the area of activity appeared as if it had increased in size. My doctors were worried that I still had residual lymphoma and might need radiation.
Some background: In this clinical trial, only 2 out of 48 people needed radiation. For the first time in this entire ordeal, I thought "why me." Honestly, not once did those two little words cross my mind when I was diagnosed back in February, or as I lost my hair from chemo, or as I said goodbye to my period for potentially the last time. I just never questioned why I was one of the unlucky few to get lymphoma.
As I write this post, I'm still not sure why I jumped to the feelings of "why me." I guess I was so confident in this treatment plan after my near-perfect mid-treatment scan that I never accounted for the possibility that I might need radiation.
The doctors scheduled a CT scan for the following week to determine if the area with PET activity showed any abnormal tissues. I'm not going to lie, those six days of waiting were really hard. At one point, I just felt like I completely lost hope. Radiation can be very successful, but as you start checking off the boxes of treatment options, it gets a lot scarier.
When I reached that low point, I called my coordinating nurse. I know that a lot of people would just want to hear someone say, "oh, I'm sure it's nothing," but I needed to hear exactly what the doctors were thinking. I really appreciate how honest she was. She explained that the doctors were leaning towards residual lymphoma, but that we definitely couldn't jump to conclusions without seeing the CT scan. She also reassured me that--if it came to it--the NIH radiation oncology team is amazing, and that I'd be in good hands. She also gave my information to the on-call doctor who later called me and spent an hour on the phone going over every possible outcome of the scans and what it would mean for my treatment. Any doctors reading this, there is no way to put into words how much it means to the patient when you spend that kind of time helping us.
After talking to my nurse and doctor, I did feel a lot better. This time, I was mentally prepared for any bad news from the CT scan. THANKFULLY, the CT scan showed no growth or abnormal tissues in the area. The doctor even pulled up my scan to show me exactly what he was looking at and measuring. They decided to wait another 4 weeks to see what would happen in the PET scan over time. Believe me, it's much much easier to wait four weeks after a good scan than 4 days after a bad one!
Fast forward the four weeks: My third post-treatment PET scan still showed activity, although this time it hadn't increased. Since my CT scan a few weeks earlier looked good, and there was no increase in the PET activity, the doctors decided to wait another 4 weeks and repeat the PET and CT scans.
Here I am, waiting for my fourth post-treatment set of scans on October 4th. Jason and I have attempted to get back into the swing of things. We've been attending family events and exploring Washington DC with Zachary. I've started writing again for work, and my hair is even starting to grow back. But even though life is slowly returning to something of a normal, it's completely different than before my diagnosis. I live life in four week increments at the moment, because after four weeks, I have no clue if I'll be cancer free or not.
So, here's to four weeks of enjoying life to the fullest!
Sunday, July 8, 2012
The Verdict Is In....Wait 4 More Weeks
So I had my post-treatment scans on Thursday (sorry for the delay in posting here). I have mostly good news: My CT scan looked great. Only a very minor amount of scar tissue remains. My PET scan, however, showed a small amount of activity in my chest.
The doctors don't seem worried yet. Apparently having a small amount of activity in the PET scan is common for this type of lymphoma and treatment. Unfortunately, current PET technology can't dissociate inflammation and active cancer, so interpreting PET images can be a little tricky.
Most likely, the activity in the scan is inflammation caused by my body trying to break down scar tissue. To be sure, I need to repeat my PET in four weeks to verify that the level of activity is stable or decreasing (an increase could indicate that I still have active lymphoma, in which case we would move on to biopsy to confirm).
While I was hoping to have a clean PET this first time around, it looks like I'll have to wait a few more weeks to hopefully hear that news. In the mean time, I'll have my little Zachy to keep me busy!
The doctors don't seem worried yet. Apparently having a small amount of activity in the PET scan is common for this type of lymphoma and treatment. Unfortunately, current PET technology can't dissociate inflammation and active cancer, so interpreting PET images can be a little tricky.
Most likely, the activity in the scan is inflammation caused by my body trying to break down scar tissue. To be sure, I need to repeat my PET in four weeks to verify that the level of activity is stable or decreasing (an increase could indicate that I still have active lymphoma, in which case we would move on to biopsy to confirm).
While I was hoping to have a clean PET this first time around, it looks like I'll have to wait a few more weeks to hopefully hear that news. In the mean time, I'll have my little Zachy to keep me busy!
Friday, June 29, 2012
Cycle 6 Week 3
Wow, time flies. I can't believe that it's already been two weeks since I last posted. My sixth cycle of chemo went really well. The days when I was hooked up to the chemo bag passed fairly quickly, which means I made it through all of my chemo cycles without having any pump problems or chemo spills at home, yay!!!!
My final day in the clinic with my nurses was a little surreal. I've spent the last four months relying on these men and women to make sure my vitals are ok, ensure that I receive the proper drugs, and stand ready as a trusted source of information and support. While I was happy to be finished getting toxic chemicals pumped through my veins, I wasn't happy to be ending my visits with these amazing people. My time spent on chemo was a lot better than I thought it would be because of them.
I was also sad to be ending my frequent meetings with some of the other patients who were/are on the same treatment. As much as my friends and family have helped over this trying time, no one can understand as well as the patient in the chair next to me who's summoning the same hope and facing the same fears as me. Plus, sharing side effect stories made the whole thing feel something like a club--albeit one that no one would want to join! But we were in it together, and sharing our stories during our clinic visits made the experience a lot easier. During one of my earlier cycles, I met a patient who really wasn't doing so well (same treatment as me). She was barely able to eat, completely depressed, and feeling utterly alone in her situation. After a small group of us started talking and supporting each other, her mood, and condition, dramatically improved. I can't stress the importance that personal relationships play in getting through something like chemotherapy.
For my bad days after the chemo infusions, my sister, Sarah, flew out from Colorado. Having her with me was such a HUGE help, and my mom was certainly relieved to have the additional person around to take care of Zachary. Plus, Sarah and I did some serious wedding planning for her wedding next year. I've been the most tired this sixth cycle, so sitting around looking at wedding stuff online was a welcomed task. Other than that, I think I slept more hours than I was awake during the second week of the cycle!
I'm currently in week three of cycle six. I'm not recovering from the fatigue as quickly as I did during the first five cycles, but it's not terrible. My hemoglobin (the stuff that carries oxygen around in our blood) hasn't rebounded as quickly as usual, so that's probably contributing to the tired feeling (and headaches I had for a few days), but so far the doctors don't think a blood transfusion is necessary. I'll keep my fingers crossed that my counts increase by my next blood draw on Monday.
On July 5th, I get my end of treatment PET and CT scans. Sometimes I feel calm about it, sometimes I feel like a basket case. I'm trying to keep the same attitude I had going into my mid-treatment scans: hopeful that I get clean results, but not expecting anything. The doctors have warned me that many patients do show some activity on the PET scan, but that the activity can simply indicate inflammation, not active lymphoma. If that's the case, they will rescan in another six weeks. I don't know about you, but that does not sound like a fun six weeks to wait...
So that's where I am. I truly can't believe I've already finished six cycles. I won't say that it feels like it went by quickly, because it doesn't feel that way. There were days when I was taking it minute by minute, and the hand on the clock couldn't move fast enough. But with the help and support of so many friends and family, I made it through. Plus, I've noticed that some of the comments on this blog are from people I've never met who were inspired or touched by one of my posts, and that in itself has made me feel like something really good has emerged from something so terribly bad--so thank you all for all of your kind words.
Hope everyone enjoys the weekend!!!
My final day in the clinic with my nurses was a little surreal. I've spent the last four months relying on these men and women to make sure my vitals are ok, ensure that I receive the proper drugs, and stand ready as a trusted source of information and support. While I was happy to be finished getting toxic chemicals pumped through my veins, I wasn't happy to be ending my visits with these amazing people. My time spent on chemo was a lot better than I thought it would be because of them.
I was also sad to be ending my frequent meetings with some of the other patients who were/are on the same treatment. As much as my friends and family have helped over this trying time, no one can understand as well as the patient in the chair next to me who's summoning the same hope and facing the same fears as me. Plus, sharing side effect stories made the whole thing feel something like a club--albeit one that no one would want to join! But we were in it together, and sharing our stories during our clinic visits made the experience a lot easier. During one of my earlier cycles, I met a patient who really wasn't doing so well (same treatment as me). She was barely able to eat, completely depressed, and feeling utterly alone in her situation. After a small group of us started talking and supporting each other, her mood, and condition, dramatically improved. I can't stress the importance that personal relationships play in getting through something like chemotherapy.
For my bad days after the chemo infusions, my sister, Sarah, flew out from Colorado. Having her with me was such a HUGE help, and my mom was certainly relieved to have the additional person around to take care of Zachary. Plus, Sarah and I did some serious wedding planning for her wedding next year. I've been the most tired this sixth cycle, so sitting around looking at wedding stuff online was a welcomed task. Other than that, I think I slept more hours than I was awake during the second week of the cycle!
I'm currently in week three of cycle six. I'm not recovering from the fatigue as quickly as I did during the first five cycles, but it's not terrible. My hemoglobin (the stuff that carries oxygen around in our blood) hasn't rebounded as quickly as usual, so that's probably contributing to the tired feeling (and headaches I had for a few days), but so far the doctors don't think a blood transfusion is necessary. I'll keep my fingers crossed that my counts increase by my next blood draw on Monday.
On July 5th, I get my end of treatment PET and CT scans. Sometimes I feel calm about it, sometimes I feel like a basket case. I'm trying to keep the same attitude I had going into my mid-treatment scans: hopeful that I get clean results, but not expecting anything. The doctors have warned me that many patients do show some activity on the PET scan, but that the activity can simply indicate inflammation, not active lymphoma. If that's the case, they will rescan in another six weeks. I don't know about you, but that does not sound like a fun six weeks to wait...
So that's where I am. I truly can't believe I've already finished six cycles. I won't say that it feels like it went by quickly, because it doesn't feel that way. There were days when I was taking it minute by minute, and the hand on the clock couldn't move fast enough. But with the help and support of so many friends and family, I made it through. Plus, I've noticed that some of the comments on this blog are from people I've never met who were inspired or touched by one of my posts, and that in itself has made me feel like something really good has emerged from something so terribly bad--so thank you all for all of your kind words.
Hope everyone enjoys the weekend!!!
Wednesday, June 13, 2012
I'm 30!
I finished 30 spins around the sun yesterday. I
know a lot of people fear the 30-year mark, thinking this magic age marks the
end of youth. Turning 30 will likely be one of the luckiest moments of my life.
My lymphoma, if untreated, has the potential to take a life in a matter of
months. Without the miracle of medicine, I may not have seen my 30th
birthday. This thought still chokes me up.
I will begin my sixth (and hopefully final!) cycle
of chemo at the end of this week. I will admit that I’m a bit nervous. The bad
days in cycle five completely kicked my ass. I won’t dwell on it here, but
there were certainly moments when I just wanted to go to the hospital and have
them put me on a morphine-induced holiday. Somehow I got through it, though,
and I know I’ll just have to get through it again. A few days ago, I re-read
all of my get-well-soon cards as motivation to face this final cycle.
Other than the four or five bad days, cycle 5 has
gone well. All of my good days were really good, which allowed me to go on
dates with Jason, spend quality time with family, and even go to a summer party
at my boss’s house. Thankfully, my birthday fell in my good days as well. While
I didn’t get to do a big 30th birthday party, my mom took me on a nice
shopping spree, and I received some wonderful cards and gifts in the mail. I’ll
have to save the big party for when all of this is over and we’re up to hosting
a lot of people again. Rest assured, we will start hosting our parties again
within the year!
I’ll try to update this blog more regularly during
cycle six. The fatigue and stomach cramps caught me off guard during the fifth
cycle, so I spent my bad days on the couch not moving and the good days out of
the house enjoying feeling good. I’m sure I’ll have plenty of emotions and
thoughts to work through during what will hopefully be my final cycle, so I’ll
attempt to share those thoughts here as I have them.
I’ll finish this post with a nice story:
I was walking to my car after shopping at
Michael’s two days ago when I heard an older gentleman sitting in his car in
the parking lot say, “M’am?” I turned around and approached his window to see
if he needed anything. The gentleman, slightly hunched over his steering wheel with a head covered in soft white locks, looked straight into my eyes and said, “Is
it cancer?”
I was wearing one of my hats, but it was still obvious that I
didn’t have any hair. “Yes,” I managed to answer, slightly surprised by his
question, but curious where this conversation was about to go.
The gentleman
continued, “I had it 33 years ago, and here I am today. You’re going to be just
fine.” As I held back tears, I managed to whisper the words “Thank you.” I
wished him well and continued walking to my car. Once inside, I broke down. I
cried and cried and cried, not because I was sad that someone could see that I
was going through chemotherapy, but because I was happy that someone could
survive so long after having cancer.
The worst part about having a cancer diagnosis is
losing my invincibility. I’ve lived a healthy life, and to be completely
honest, I never thought this would happen to me. Now I have no clue what the
future holds. Maybe my lymphoma will return; maybe I’ll get a secondary cancer;
maybe I’ll never have to experience any of this again. The fact is, I don’t
know what will happen. I miss feeling invincible. But the old man in the car
gives me hope. It’s possible to have cancer and then three decades later tell
someone in a parking lot that it’s going to be ok.
Thursday, May 24, 2012
Good News!!!!!!!!!!!!!!!!!!!!!!!!!!!!
As you know, I had my mid-treatment CT scan today. And I quote: "It looks like you are having excellent success with this treatment." The scans showed that my tumors were pretty much gone, and that I had very little scar tissue. Needless to say, Jason and I had somewhat of an emotional breakdown in the doctor's office. Once I finally collected myself, the doctor said that it is very unlikely that I'll need radiation or any more chemo after my next two cycles. Yay!
I have to get up bright and early tomorrow morning for my 7am appointment to start my fifth round of chemo, so I'll keep this post short. BUT, I want to thank everyone again for helping me to get through this. All of your supportive words, encouragement, and prayers have kept me in a state of mind that has been conducive to healing, which has likely been an important component to the success of this treatment. Thank you!!!!!!
Two more cycles to go!
I have to get up bright and early tomorrow morning for my 7am appointment to start my fifth round of chemo, so I'll keep this post short. BUT, I want to thank everyone again for helping me to get through this. All of your supportive words, encouragement, and prayers have kept me in a state of mind that has been conducive to healing, which has likely been an important component to the success of this treatment. Thank you!!!!!!
Two more cycles to go!
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