It turns out that not having the oxaliplatin last time around made so many things better... less cold sensitivity, less weird jaw pain with first bites, less metallic taste in my mouth... the fatigue still hit around the same time, and lasted about as long, but that was certainly a nice break. If only I could have gotten a break without an allergic reaction; I'll take it regardless.
And now, I'm on VACATION. For real. I did make one work call today but it was only 10 minutes and I knew about it ahead of time. Now I'm off the clock for real. We had a great Christmas Eve and Christmas Day and are now having our awesome vacation week, all four of us. Today it's cold out (what? winter?) so we are hunkered down inside, waiting for our 1-3 inches of snow overnight - playing with new toys, reading new books, watching endless Harry Potter movies, taking long naps. I was so productive today and over the weekend I think I can totally laze out the rest of the week: pot roast is in the crock pot, baked three loaves of banana bread, yoga with Connor, day-after-Christmas shopping at the mall with Ava, cleaned the kitchen, cleaned off my desk, got some tax stuff together, re-organized all the holiday wrapping and decorations, bills paid, laundry done (thanks to superman hubby). I even got some coloring in. And tonight I'll actually cook the sides for the pot roast - first time I've cooked anything other than pasta since July.
Tomorrow is Star Wars (shhhhhhhhhhh). Then The Big Short, The Danish Girl, and Joy... and we'll see what else is out that's worth seeing. And I have something like 8 books to read and a month's worth of New Yorkers to catch up on.
I will not think about course 8 yet... it will be crappy, in all kinds of ways. But it isn't for a week. Vacation rules.
Monday, December 28, 2015
Monday, December 21, 2015
Course 7 (of 12) - unwelcome excitement
Today was an adventure. After receiving good news about the scan - no surprises, everything looks fine - I had an allergic reaction to the oxaliplatin. I guess the cold sensitivity wasn't enough of a challenge; the drug had to go and find some other impact it could make.
I have no known allergies and have never had an allergic reaction. To all those folks I know who do and have, my heart goes out to you. At first I thought it was just a hot flash; very familiar warm sensation in my upper chest and face. Then I got some kind of tickle in my throat. I took a sip of water but kept having to cough. Then my lips started to tingle and I noticed my breathing was kind of labored. I hit the call button and my nurse showed up within 30 seconds. I didn't have to say a thing - she took one look at me and said, "Oh, you're having a reaction." And then bodies started really moving. Within another minute there were five other people in my little infusion space, the chemo was stopped, I got a steroid and some Benadryl, oxygen in my nose. I was asked if I had any chest pains and I had to ask what they would feel like - I've never had chest pains either (and didn't today). Things slowly returned to normal. My oncologist was paged and he came by to assess as well.
All this time, Ryan was getting us lunch from the Brigham & Women's cafeteria. He arrived to a room full of people hovering over me and me looking a little worse for wear. Not a cool surprise for him.
Breathing was totally normal within another 5 minutes or so. My oncologist stopped by again a few minutes later and said an allergic reaction is not uncommon to this drug, and more common after a few treatments. For today, no more oxaliplatin, but I did have the other drug that goes with it (leucovorin) and will still go home with the pump full of 5FU. Allergic reactions to the 5FU (eff you!!!!!!) are apparently exceedingly rare. The pump is going now and I feel fine. For next time, I get to stuff myself full of steroids 12 hours and 6 hours before the infusion is scheduled, and they will slow down the infusion: 6 hours instead of 2. I'll be here all day. And if I have another reaction, I'll have to be "desensitized" - some kind of insanely long infusion of something. But I can't think about that just yet.
There was a moment in all the hubbub when I thought, I will not die in this fucking chair. Breathe in courage, breathe out fear, courage is just a breath away. That was probably an overreaction, but again, I've never had a serious allergic reaction to anything, and my track record for ending up in the hospital with emergency surgery after surprises like this put the odds in favor of another snafu. After things were mostly back to normal - now I just feel quite a bit drained and sleepy from the Benadryl - I kept tearing up, thinking about how it could happen again, and if it does there is some other unknown to go through, and if that doesn't work maybe I can't finish the full 12, maybe the cancer comes back and we can't do anything to treat it and then I do die in the fucking chair or the emergency room or the hospital bed or a hospice or who knows. For the record, I will not go gently into that good night, I will rage, rage against the dying of the light. Keep me here, friends.
I have no known allergies and have never had an allergic reaction. To all those folks I know who do and have, my heart goes out to you. At first I thought it was just a hot flash; very familiar warm sensation in my upper chest and face. Then I got some kind of tickle in my throat. I took a sip of water but kept having to cough. Then my lips started to tingle and I noticed my breathing was kind of labored. I hit the call button and my nurse showed up within 30 seconds. I didn't have to say a thing - she took one look at me and said, "Oh, you're having a reaction." And then bodies started really moving. Within another minute there were five other people in my little infusion space, the chemo was stopped, I got a steroid and some Benadryl, oxygen in my nose. I was asked if I had any chest pains and I had to ask what they would feel like - I've never had chest pains either (and didn't today). Things slowly returned to normal. My oncologist was paged and he came by to assess as well.
All this time, Ryan was getting us lunch from the Brigham & Women's cafeteria. He arrived to a room full of people hovering over me and me looking a little worse for wear. Not a cool surprise for him.
Breathing was totally normal within another 5 minutes or so. My oncologist stopped by again a few minutes later and said an allergic reaction is not uncommon to this drug, and more common after a few treatments. For today, no more oxaliplatin, but I did have the other drug that goes with it (leucovorin) and will still go home with the pump full of 5FU. Allergic reactions to the 5FU (eff you!!!!!!) are apparently exceedingly rare. The pump is going now and I feel fine. For next time, I get to stuff myself full of steroids 12 hours and 6 hours before the infusion is scheduled, and they will slow down the infusion: 6 hours instead of 2. I'll be here all day. And if I have another reaction, I'll have to be "desensitized" - some kind of insanely long infusion of something. But I can't think about that just yet.
There was a moment in all the hubbub when I thought, I will not die in this fucking chair. Breathe in courage, breathe out fear, courage is just a breath away. That was probably an overreaction, but again, I've never had a serious allergic reaction to anything, and my track record for ending up in the hospital with emergency surgery after surprises like this put the odds in favor of another snafu. After things were mostly back to normal - now I just feel quite a bit drained and sleepy from the Benadryl - I kept tearing up, thinking about how it could happen again, and if it does there is some other unknown to go through, and if that doesn't work maybe I can't finish the full 12, maybe the cancer comes back and we can't do anything to treat it and then I do die in the fucking chair or the emergency room or the hospital bed or a hospice or who knows. For the record, I will not go gently into that good night, I will rage, rage against the dying of the light. Keep me here, friends.
Thursday, December 17, 2015
Cancer Genetics
Today was a day of appointments. The first was a consult with a genetic counselor. I learned about Lynch Syndrome, also known as Hereditary Non-Polyposis Colorectal Cancer (HNPCC), which is the most common hereditary form of colorectal cancer (and also uterine cancer). Since I am a younger cancer patient, this is a possibility they consider - however in my case there really isn't anything in my family history to suggest it. Here is some info from the Dana-Farber handout:
"Lynch syndrome is due to problems in the way that our cells repair themselves through alterations in genes... As the cells grow and divide, exact copies of these genes need to be made for the new cell that is formed. When mistakes are made during this copying process, the wrong chemical letter may end up in the new gene that is created... One set of genes helps to find and correct a certain kind of typo, known as a DNA mismatch... five genes that are a part of or associated with the DNA mismatch repair process have been shown to cause Lynch syndrome. They are called MLH1, MSH2, MSH6, PMS2, and EPCAM."
If those genes are not doing their job, these mismatches can add up and cells can lose their ability to regulate which may result in cancerous growth. As it happens, a test was already done on my tumor (since it was removed) and they saw the presence of proteins that are the result of the above genes doing their job. The counselor I spoke with today is therefore not expecting me to have Lynch syndrome. Nonetheless, they offer genetic screening to check for it. I was offered a panel screening of the above genes and about a dozen others that are linked to hereditary cancers.
All that said, only 5-10% of all cancers are hereditary. That leaves a lot of room for all kinds of other causes including just plain bad luck. I agreed to the full panel screening because I'm generally a data head and the results might help me with future treatments if the cancer recurs, or my kids if there is indeed a hereditary cause. Between this screening and the clinical research trial I signed up for I'll probably have more data than I'll know what to do with.
I also saw my surgeon for a followup. Everything looked good to her and I have no more restrictions on lifting anything or any kind of exercise. Now I can lift Connor and rebuild my upper body strength! That was positive. She reminded me that one reason they didn't reconnect me during that long second surgery was so that if I was to have radiation therapy (which I will), there would be a "clear shot" to the affected area. So I guess that's good too. She also reminded me that if I wanted to go ahead and be reconnected and have the ostomy reversed, she would ideally want me to finish all therapies and then wait a little bit so that I was as healthy as possible, and so I could have a couple more scans to see if anything was regrowing anywhere. She is thinking nine to twelve months from now (ugh). Assuming scans were good then there would be TWO more surgeries - one to do the re-connection, which would involve giving me yet another ostomy in yet another place (and the current one reversed), and after everything had healed, one to reverse that final ostomy (ugh again).
It was a little overwhelming to re-process that info. My husband reminded me that she's said all that before, but I didn't really hear it before. Waiting for my third and final appointment (CT scan) I was teary just thinking about two more surgeries, having to deal with the new normal for that long, the possibility of the cancer coming back... trying to put it all in the "to deal with later" bucket. First finish chemo, then deal with radiation. Then all the other stuff.. bah humbug.
"Lynch syndrome is due to problems in the way that our cells repair themselves through alterations in genes... As the cells grow and divide, exact copies of these genes need to be made for the new cell that is formed. When mistakes are made during this copying process, the wrong chemical letter may end up in the new gene that is created... One set of genes helps to find and correct a certain kind of typo, known as a DNA mismatch... five genes that are a part of or associated with the DNA mismatch repair process have been shown to cause Lynch syndrome. They are called MLH1, MSH2, MSH6, PMS2, and EPCAM."
If those genes are not doing their job, these mismatches can add up and cells can lose their ability to regulate which may result in cancerous growth. As it happens, a test was already done on my tumor (since it was removed) and they saw the presence of proteins that are the result of the above genes doing their job. The counselor I spoke with today is therefore not expecting me to have Lynch syndrome. Nonetheless, they offer genetic screening to check for it. I was offered a panel screening of the above genes and about a dozen others that are linked to hereditary cancers.
All that said, only 5-10% of all cancers are hereditary. That leaves a lot of room for all kinds of other causes including just plain bad luck. I agreed to the full panel screening because I'm generally a data head and the results might help me with future treatments if the cancer recurs, or my kids if there is indeed a hereditary cause. Between this screening and the clinical research trial I signed up for I'll probably have more data than I'll know what to do with.
I also saw my surgeon for a followup. Everything looked good to her and I have no more restrictions on lifting anything or any kind of exercise. Now I can lift Connor and rebuild my upper body strength! That was positive. She reminded me that one reason they didn't reconnect me during that long second surgery was so that if I was to have radiation therapy (which I will), there would be a "clear shot" to the affected area. So I guess that's good too. She also reminded me that if I wanted to go ahead and be reconnected and have the ostomy reversed, she would ideally want me to finish all therapies and then wait a little bit so that I was as healthy as possible, and so I could have a couple more scans to see if anything was regrowing anywhere. She is thinking nine to twelve months from now (ugh). Assuming scans were good then there would be TWO more surgeries - one to do the re-connection, which would involve giving me yet another ostomy in yet another place (and the current one reversed), and after everything had healed, one to reverse that final ostomy (ugh again).
It was a little overwhelming to re-process that info. My husband reminded me that she's said all that before, but I didn't really hear it before. Waiting for my third and final appointment (CT scan) I was teary just thinking about two more surgeries, having to deal with the new normal for that long, the possibility of the cancer coming back... trying to put it all in the "to deal with later" bucket. First finish chemo, then deal with radiation. Then all the other stuff.. bah humbug.
Saturday, December 12, 2015
Monday, December 7, 2015
Course 6 (of 12)
I'm hanging out at Dana-Farber again today for the sixth course of treatment. In two days I'll officially be halfway done with chemo.
But...
Today I also learned that radiation therapy is more or less a given. My right ovary - the one to which this cancer had metastasized, then became abscessed and infected - was pressed up against the pelvic wall when they removed it, leaving behind suspected microscopic cancerous cells. I remember my surgeon saying she marked the spot to facilitate radiation, so there's that. I won't start that therapy until chemo is over; it will add another 5-6 weeks to my visits here (and radiation visits are daily... fun). I haven't even met the radiation oncologist (next time) but my primary oncologist was quite certain it will be recommended. Nothing about my case is on the fence, apparently.
I also learned that my white cell count has taken enough of a hit to warrant mitigation. Starting with this course, I'll have to come back to DFCI after we disconnect the pump to receive an injection of neulasta. This drug will stimulate the production of white blood cells. The only alternative is waiting additional time in between courses, but all of us would rather stay the course. He asked if we would be up for self-injecting at home and I quickly declined; my experience with Lovanox was enough to know that I'm not capable. Pulling needles out is one thing (that I can't even do, my husband has to) - putting them in is a line I'm unable to cross. It's also an insurance consideration - apparently it might not be covered if it is administered at home. Interesting.
I was supposed to have a consult with a genetic counselor today but had to reschedule til next time as we were running behind and another consult got in the way. I did agree to participate in a clinical trial titled, "The use of sequencing to guide the care of cancer patients." It is a research study that "will help doctors and scientists better understand why cancers occur and to develop ways to better treat and prevent them. The study is also to help researchers understand how best to communicate the results of complex genetic studies to patients and doctors, and to help them use that information to choose the best treatment plan." Okay, cool. The researchers will sequence the DNA of my tumor and my blood and basically do a giant comparison to see what abnormalities may exist that may explain why my cancer occurred. They could learn something that would benefit any future treatment I might need. I have to donate an extra tube of blood at some point and complete a couple of surveys and an interview. There is always some legal mumbo-jumbo about privacy and protected health information, as they have to attach my name and medical history to results for them to be useful, but I'll admit I don't give that a second thought. Anything to fight the good fight.
But...
Today I also learned that radiation therapy is more or less a given. My right ovary - the one to which this cancer had metastasized, then became abscessed and infected - was pressed up against the pelvic wall when they removed it, leaving behind suspected microscopic cancerous cells. I remember my surgeon saying she marked the spot to facilitate radiation, so there's that. I won't start that therapy until chemo is over; it will add another 5-6 weeks to my visits here (and radiation visits are daily... fun). I haven't even met the radiation oncologist (next time) but my primary oncologist was quite certain it will be recommended. Nothing about my case is on the fence, apparently.
I also learned that my white cell count has taken enough of a hit to warrant mitigation. Starting with this course, I'll have to come back to DFCI after we disconnect the pump to receive an injection of neulasta. This drug will stimulate the production of white blood cells. The only alternative is waiting additional time in between courses, but all of us would rather stay the course. He asked if we would be up for self-injecting at home and I quickly declined; my experience with Lovanox was enough to know that I'm not capable. Pulling needles out is one thing (that I can't even do, my husband has to) - putting them in is a line I'm unable to cross. It's also an insurance consideration - apparently it might not be covered if it is administered at home. Interesting.
I was supposed to have a consult with a genetic counselor today but had to reschedule til next time as we were running behind and another consult got in the way. I did agree to participate in a clinical trial titled, "The use of sequencing to guide the care of cancer patients." It is a research study that "will help doctors and scientists better understand why cancers occur and to develop ways to better treat and prevent them. The study is also to help researchers understand how best to communicate the results of complex genetic studies to patients and doctors, and to help them use that information to choose the best treatment plan." Okay, cool. The researchers will sequence the DNA of my tumor and my blood and basically do a giant comparison to see what abnormalities may exist that may explain why my cancer occurred. They could learn something that would benefit any future treatment I might need. I have to donate an extra tube of blood at some point and complete a couple of surveys and an interview. There is always some legal mumbo-jumbo about privacy and protected health information, as they have to attach my name and medical history to results for them to be useful, but I'll admit I don't give that a second thought. Anything to fight the good fight.
Saturday, December 5, 2015
Weights and Measures
Weights:
- As of this morning I've gained back 10 of the ~25 pounds that I lost over the course of my two summer surgeries. I don't think I need to gain the other 15 back; my clothes fit better at this weight, and that's extra important now that my belly is a little asymmetrical and scar-studded. Comfort is key. I'm still careful about my protein intake, and fruits and veggies, but no longer concerned about being scrawny or weak, or feeling like I have to eat every 2 hours no matter what. I feel pretty strong these days, at least on the off weeks. All the stairs, all the time.
- I am eagerly awaiting my surgical followup on 12/17 to find out if it's okay for me to lift my son again. He weighs a little more than three times the 10 lb limit that was imposed back in September. Poor Dad has had to do all the boy carrying since then. My turn!
Measures:
- Dana-Farber really is slow about their billing. I did finally get one claims statement related to chemotherapy but I can't tell if it was for one or two treatments. If it was for just one then each treatment is something like $6,600. Those are some expensive toxic chemicals. I'll see what other claim info I get and do another financial update before the year is out.
- Since the tumors were already removed surgically there isn't any shrinkage to watch for to see if the therapy is "working." I do have a CT scan coming up, also on 12/17 - chest, abdomen, pelvis - to make sure there are no surprises. My oncologist does not expect to see anything different, but obviously better safe than sorry. Still hard to feel lucky that this metastasized to organs that are removable, but wow, that was lucky.
- We have 20 shopping days left til Christmas. How did that happen?
- The last 4 treatments have been nearly identical in terms of side affects. I haven't really experienced any accumulation of side affects yet. The cold sensitivity comes on quick and is more intense and I guess lasts a little longer now, but not significantly longer. Fatigue has been pretty consistent. I just have to wait and see if any of this changes.
- Course 6 starts Monday. When it is over I'll be halfway through. It feels like "only halfway" instead of "hooray halfway!" Such a long slog. And no decision yet on radiation afterwards, or if/when my ostomy might be reversed (more surgery). It's really still too soon to think about I guess.
- By ANY measure, I have the best family and friends and colleagues and community in the universe. I am reminded of that every second of every day. You all rock and roll and reggae.
- As of this morning I've gained back 10 of the ~25 pounds that I lost over the course of my two summer surgeries. I don't think I need to gain the other 15 back; my clothes fit better at this weight, and that's extra important now that my belly is a little asymmetrical and scar-studded. Comfort is key. I'm still careful about my protein intake, and fruits and veggies, but no longer concerned about being scrawny or weak, or feeling like I have to eat every 2 hours no matter what. I feel pretty strong these days, at least on the off weeks. All the stairs, all the time.
- I am eagerly awaiting my surgical followup on 12/17 to find out if it's okay for me to lift my son again. He weighs a little more than three times the 10 lb limit that was imposed back in September. Poor Dad has had to do all the boy carrying since then. My turn!
Measures:
- Dana-Farber really is slow about their billing. I did finally get one claims statement related to chemotherapy but I can't tell if it was for one or two treatments. If it was for just one then each treatment is something like $6,600. Those are some expensive toxic chemicals. I'll see what other claim info I get and do another financial update before the year is out.
- Since the tumors were already removed surgically there isn't any shrinkage to watch for to see if the therapy is "working." I do have a CT scan coming up, also on 12/17 - chest, abdomen, pelvis - to make sure there are no surprises. My oncologist does not expect to see anything different, but obviously better safe than sorry. Still hard to feel lucky that this metastasized to organs that are removable, but wow, that was lucky.
- We have 20 shopping days left til Christmas. How did that happen?
- The last 4 treatments have been nearly identical in terms of side affects. I haven't really experienced any accumulation of side affects yet. The cold sensitivity comes on quick and is more intense and I guess lasts a little longer now, but not significantly longer. Fatigue has been pretty consistent. I just have to wait and see if any of this changes.
- Course 6 starts Monday. When it is over I'll be halfway through. It feels like "only halfway" instead of "hooray halfway!" Such a long slog. And no decision yet on radiation afterwards, or if/when my ostomy might be reversed (more surgery). It's really still too soon to think about I guess.
- By ANY measure, I have the best family and friends and colleagues and community in the universe. I am reminded of that every second of every day. You all rock and roll and reggae.
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