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.
Thursday, November 26, 2015
Monday, November 23, 2015
Course 5 (of 12)
My infusion of oxaliplatin - aka Drug with Evil Cold Sensitivity Side Affect - began around 12:15pm today. We got home about three hours later. My husband got the mail from the mailbox. It was cold, having been out there for a couple hours in 40-degree weather. I opened one of the letters and my fingertips immediately started tingling. The evilness is now triggered by PAPER. Plain, matte finish paper. Not even the glossy magazine stuff. I probably shouldn't touch the glossy stuff at all.
Gah.
Otherwise, expecting the same old same old from this course. My oncologist's assistant, with whom I met today, suggested I pay close attention to my level of hydration this time around to see if that may be a factor in the awfulness of day 3. It's a great point. I probably don't fill my water bottle as much when the pump is connected because those are the days when I know the cold sensitivity is highest; even touching the water faucet can be evil (it's right up against a wall with no insulation, and there is a draft from the pipe underneath that leads to the outside spigot). Likewise I don't drink any juice or seltzer from the fridge, unless I let it sit out for a while, and usually I'm too impatient for that. But this time around I'll try to be patient and maybe it will make a difference.
Back to steeping.
Gah.
Otherwise, expecting the same old same old from this course. My oncologist's assistant, with whom I met today, suggested I pay close attention to my level of hydration this time around to see if that may be a factor in the awfulness of day 3. It's a great point. I probably don't fill my water bottle as much when the pump is connected because those are the days when I know the cold sensitivity is highest; even touching the water faucet can be evil (it's right up against a wall with no insulation, and there is a draft from the pipe underneath that leads to the outside spigot). Likewise I don't drink any juice or seltzer from the fridge, unless I let it sit out for a while, and usually I'm too impatient for that. But this time around I'll try to be patient and maybe it will make a difference.
Back to steeping.
Saturday, November 21, 2015
The holidays are coming...
In order to keep my every other week chemo schedule, I ended up with treatment during the weeks of Thanksgiving and Christmas. Sadly this means we cannot travel to see our extended family, who typically gather in CT, for the former - it will be day 4 and I just won't be up for it yet. I'm hopeful we can see them for the latter though, as that holiday falls on day 5, and I've been able to go into the office on day 5 for the last two treatments. I'm thinking I can probably handle the short car ride to the usual Christmas gathering place if that gathering happens this year.
So next week we will have our first Thanksgiving in our own house, just the four of us. We will not cook. We are letting a local farm do that for us (Wilson Farms, in Lexington - highly recommend). It will be restful and lovely.
I am thankful for my amazing family that has taken such excellent care of me since the sudden awfulness this summer. I still have not truly digested all that has occurred. I think some part of me does not want to. It wants the whole affair to fade into the past, some fuzzy and distant memory, an unfortunate blip. This is what I do on off weeks - forget. When every other Monday rolls around, I remember, and suffer through, and count how many more Mondays there are to go. But I'm lucky... because I have my family, my home, (most of) my health... it could be so much worse.
I hope everyone has a peaceful Thanksgiving holiday.
So next week we will have our first Thanksgiving in our own house, just the four of us. We will not cook. We are letting a local farm do that for us (Wilson Farms, in Lexington - highly recommend). It will be restful and lovely.
I am thankful for my amazing family that has taken such excellent care of me since the sudden awfulness this summer. I still have not truly digested all that has occurred. I think some part of me does not want to. It wants the whole affair to fade into the past, some fuzzy and distant memory, an unfortunate blip. This is what I do on off weeks - forget. When every other Monday rolls around, I remember, and suffer through, and count how many more Mondays there are to go. But I'm lucky... because I have my family, my home, (most of) my health... it could be so much worse.
I hope everyone has a peaceful Thanksgiving holiday.
Monday, November 16, 2015
Dinner out is awesome
My last post left this blog on a sour note. To turn it around, I'll offer that once day 3 is over, everything gets better. Day 3 is just a very, very long day when things getting better doesn't seem remotely possible.
One way in which things get better is I feel up to having dinner out. This is one of my favorite things. It can be an expensive vice, but now more than ever I appreciate someone else doing the cooking and serving and cleaning up after. We have awesome friends who have provided meals and gift cards and lovely company at said dinner outings, making the whole eating thing so much more doable and pleasurable! A wonderful thing during these long months of treatment.
I am on my way to an impromptu dinner outing now, which I can do much more easily on the "off" weeks. Today was a banner day at work (successful day 1 of a significant system implementation) and I am celebrating with the fam, who have endured a year's worth of Mom working early and late and weekends.
Looking forward to many more dinners out with many more friends as recovery progresses!
Wednesday, November 11, 2015
Tuesday, November 10, 2015
Course 4 - My favorite chemo things
Before the meh sets in (and it's coming on faster this time) I thought I would share my current favorite things while going through chemo. I noticed so many of them this morning and was reminded of the generosity and thoughtfulness of so very many people, and my mood lifted instantly. In honor of awesome family and friends and colleagues, here's the highlight reel:
My friends and former colleagues Trish & Violet gave me this amazing tea. I drink it every morning during treatment weeks. It is delicious and keeps the nausea at bay. Thanks ladies!
My mom often gives me household items and other random things she no longer needs but thinks we may find useful. Once she gave me several pairs of gloves that I was sure I wouldn't ever need. Lo and behold, this pair is perfect for wearing to avoid the icky cold sensitivity nonsense when I take things out of the fridge and freezer. As you can see they now hang right on the fridge, rescued from a life doomed to be spent at the bottom of a storage bench. Thanks Mom!
This is an awesome super-long super-comfy cashmere scarf that I bought myself a few years back. I can wrap it around my head almost three times if I need to. Like the gloves, extremely useful for keeping the icky cold sensitivity at bay during cold windy days, especially when walking along the waterfront to my office - cold air in my nose, ears, lungs is not happy, especially when the sensitivity is high. It has lots of little holes and stains... but it is still warm. I promise I'll get it cleaned and repaired after this winter :)
This is an amazing letter I got from my NEPC family. It came with an equally amazing care package full of well wishes and immensely helpful goodies, some of which are pictured here. This is also prominently displayed on our fridge. I read it every day and am reminded how lucky I am to get to work there. Thank you, NEPC family!
This is a box of legit respirators, aka face masks, from my friend and colleague Bernie. Not only will these ensure I stay as healthy as possible during all this treatment, they also come in handy for avoiding the cold sensitivity that occurs just breathing in cold air - these puppies keep the air by my nose and mouth nice and warm. If you come to visit us and are in the least bit ill, you'll be trying one on :) Thanks Bernie!
This is the view from my home "office," which is just my desk in the bedroom. I work from home during treatment weeks. It is a pleasant view, even when the leaves fall. Good for witnessing squirrel fights on the wires and hawks overhead, and people-watching of all varieties: pedestrians, dog-walkers, stroller-pushers, drivers waiting at the traffic light, the guy from the assisted living place on the hill who takes his smoke break at the exact same time every day... you get the idea. Thanks, Arlington community, for this entertainment!
This is a prayer shawl I got from a former colleague at Berklee. I had never heard of these before - they are pretty wonderful. I bring this to every chemo treatment. It is perfect when the room is just a bit chilly, and especially comforting knowing the history and thoughtfulness behind it. Thank you, Maria!
These are amazingly soft & cozy & moisturizing & pampering socks my friend and colleague Rosann gave to me. I have never worn such a thing before - but now I do ALL THE TIME, especially when vegging in front of the TV at night. I think I've mentioned how dessicating this treatment is and that applies to all my skin, everywhere, and these are particularly helpful keeping my feet hydrated. Thank you Rosann!
Another awesome helpful clothing item I've received - from many people - is comfy lounge wear! I was going to take a picture, but I wear these pieces of my wardrobe so often now, they are all in the wash except the ones I'm wearing right now! Trust me, they are awesome and fashionable :) Thanks to my friends Hathalee, Trish & Violet, my mom-in-law Bert, and again NEPC!
This is an overflowing folder of letters and cards with well wishes from all over the place - family and friends and daycare and neighbors and work. I love these so much. I read these often, especially during treatment weeks, especially during days 3 and 4 when I can't believe I have to go through this how many more times... and then maybe radiation on top of that...possibly one more surgery... ugh. So I get to that place and then I read these and I'm back on the positive and emotionally stable spectrum again. Thank you, EVERYBODY!!
Last but not least - these are my family peeps. I like and love you very much. I couldn't do any of this without you. You reggae. Thank you the mostest :)
Monday, November 9, 2015
Course 4 (of 12)
Sadly, today I have no windows. The view is not exactly inspiring. Oh well.
My blood work is all good so no adjustments to treatment. Expecting the same old same old for this course. And, last night I cut all the refrigerated fruit I need so I won't have to pick up any strawberries. Let the steeping begin.
Thursday, November 5, 2015
All the stairs
Today I took ALL THE STAIRS out of South Station from the red line. No escalators. No cane. Felt good. I haven't done that since July.
Today is also the fourth day in a row I've made it to the office using public transportation. I have not done that since July either.
Appreciative that Mother Nature is giving us a little extra warm weather this week - won't feel like I missed the whole summer.
Progress!
Wednesday, October 28, 2015
Course 3 - DIY success!
We did it - disconnected that nasty pump all by ourselves! Fifteen minutes at home versus three hours to and from DFCI. I'll call that a win. Still weird. And now I'm officially 25% through chemo treatment. This round has been almost identical to round 2, except for the cold sensitivity bit - that is definitely more pronounced and super annoying. Fatigue is there but not totally overwhelming (that may happen tonight and last through tomorrow... it's usually darkest before day 5). Onward and upward...
Tuesday, October 27, 2015
Fruits and Foils are Evil
This time around the sensitivity to cold side affect is rearing its ugly head. Yesterday after we got home I felt like having some grapes. I took them out of the fridge (hmm, cold) and rinsed them off (water is also cold) and started to pull some off the vine into a bowl. About two grapes in I had to stop - grapes are really cold! I also had some tingling that would get more and more intense the longer I held the grape. After another minute of this I gave up and my husband got me my grapes.
I also wanted a small bit of cheese to go with my grapes. I had an unopened package of sharp Vermont white, also in the fridge. I took it out and tried to open the foil wrapping. Foil in the fridge is freaking cold!! I ended up having to hold it in a paper towel to get it open and to hold it while I cut it.
I also took a sip of just-a-little-bit-too-cold water and got the frog in the throat feeling. But not everything is awful. Different cold materials give me different reactions. Fruits and foils are EVIL. Glass and ceramic are almost as bad. Plastics and papers, not so much. Walking barefoot on a cold floor is tingly. Outside door handles aren't too bad but I did take a walk on the very cold day a couple weeks ago, I think it was day 4 of course 2, and felt weirdness in my ears and sinus that stopped once I was inside. I'll be wearing my hat pulled down and my scarf wrapped all around my face this winter. Either that or I won't leave the house til March.
It's supposed to wear off after a couple days, but it's one of the cumulative side affects. My oncologist said if it gets terrible they can dial back the oxaliplatin, the drug that causes it, and that usually helps. For some patients they cut it out all together towards the end. I guess I have a ways to go before I can cry uncle in good conscience.
Monday, October 26, 2015
Course 3 (of 12)
Just another day at the office... lotsa tubes, my laptop, and the difficult purple nitrile gloves behind me on the wall. Let the steeping begin.
Sunday, October 25, 2015
The Cost of Cancer
Catching up on the financial aspect of this ordeal. I only got the BCBS summaries for the 2nd surgery a couple of weeks ago; maybe Brigham & Women's is a
lot slower with their billing than Mount Auburn. I tried categorizing
all the service costs on the summaries I have gotten so far. Some of
the service descriptions are vague, e.g. "Clinic." Good enough to give
an idea though. Here's where we stand as of the last summary I
received, dated 10/9:
Clinic/Consultation 1,076.00
Emergency Room 1,949.00
Inpatient 6,687.34
Labs/Scans 22,257.00
Medical Supplies 591.03 (these are specific to my ostomy)
Surgery 16,516.50
TOTAL 49,076.87
Tests are apparently wicked expensive. If I weren't reading Mr. Brill's book, I would have been surprised they were the highest cost (but I am, so I'm not). Otherwise, we've spent just under $800 out of pocket on things related to the above - copays, prescriptions, parking, and meals while at the hospital or during treatment. Only the copays are included in that 49K total and there haven't been that many of them, maybe $100 worth. Have I mentioned how fortunate I am to have amazing health insurance coverage?
I'm wondering what the cost of chemo is specifically, but haven't seen that treatment listed yet. Dana-Farber could be even slower than BWH with their billing. If that gets backed up anything like their laboratory does, it could be months!
Tomorrow begins the third round. Having a relaxing Sunday to prepare.
Clinic/Consultation 1,076.00
Emergency Room 1,949.00
Inpatient 6,687.34
Labs/Scans 22,257.00
Medical Supplies 591.03 (these are specific to my ostomy)
Surgery 16,516.50
TOTAL 49,076.87
Tests are apparently wicked expensive. If I weren't reading Mr. Brill's book, I would have been surprised they were the highest cost (but I am, so I'm not). Otherwise, we've spent just under $800 out of pocket on things related to the above - copays, prescriptions, parking, and meals while at the hospital or during treatment. Only the copays are included in that 49K total and there haven't been that many of them, maybe $100 worth. Have I mentioned how fortunate I am to have amazing health insurance coverage?
I'm wondering what the cost of chemo is specifically, but haven't seen that treatment listed yet. Dana-Farber could be even slower than BWH with their billing. If that gets backed up anything like their laboratory does, it could be months!
Tomorrow begins the third round. Having a relaxing Sunday to prepare.
Thursday, October 22, 2015
Working! Work work work
The working full-time thing really interferes with the blog thing!
I made it four days in a row in the office this week. I did opt to drive in one of those days, but I made up for it by climbing what felt like 500 flights of stairs going around to all my daughter's teachers for parent/teacher conferences. Tomorrow I opt to work from home so I don't completely overdo it before the next course.
And tonight, I opt to have a very tiny glass of wine. I think I can handle it if I drink it over a couple hours leading up to bedtime. It's been a long, long week.
Saturday, October 17, 2015
Course 2 - DIY fail
"Thanks for pulling the needle out of my chest." That's a phrase I wasn't expecting to say to my husband, ever.
I don't think I've gone into the weirdness of having a port. Mine is implanted in my upper right chest wall. Having lost that bit of weight, it's pretty obvious unless my clothes are covering it. Mine is a dual-lumen power port. It has two round receptacles that make a decent little bulge under my skin. The tubing attached to the receptacles goes up over my collarbone towards my neck and the catheter ends somewhere near a major vein. I don't know exactly because I didn't want to know when they offered to tell me back when I gave my consent to the procedure. When they flush the port with saline - which they do whenever they access it, or de-access it, and before and after administering anything through it - I can usually taste it. I can taste some of the other medicines as well, like the heparin that is used before de-accessing to prevent clotting. It's way in the back of my throat and feels pretty weird. When it is accessed the needle mechanism protrudes about another half inch and is secured with some steri strips and a clear dressing that covers the whole apparatus, with just a small opening at the bottom for the external tubing that is attached to the needle.
A nurse has to access the port, but patients are often taught how to de-access it themselves, especially those undergoing my regimen who are at home with a pump. It saves you a trip to DFCI for what is essentially a 5-min appointment. We're not terribly far away, but accounting for traffic, we'd get 2-3 hours back in our day, every other week. So it sounded like a thing to try.
For the first course we had to come back since we didn't know how to do it. My oncology nurse did the de-accessing but she described the steps as she did them, and gave us the written procedures with pictures and a link to a video on the DFCI website. It isn't all that complicated: turn off the pump, clamp the tubing, disconnect the pump, sterilize the end of the needle tubing, un-clamp, flush with saline, flush with heparin, clamp, remove the dressing and steri strips, remove the needle, discard in sharps box, put the pump into a plastic hazardous materials bag, seal it, return it next time. The nurses do this in maybe three minutes and make it look incredibly easy.
For this second course I was not convinced I could do this myself so we came back again for the disconnect. My intention was to do it myself but with the nurse supervising. I thought that if I could do it once in a safe place, I'd be comfortable enough to do it at home. Lots of things were not as I expected:
And so next time we'll do it together and hopefully it will all go well.
Otherwise, it's day 4 and I'm tired, but overall this course was better than the first. It probably helps that I'm more recovered from the surgery now and am getting some strength back with my walks and commuting to work and all. I was able to work from home without too much trouble and without any naps! Ativan is my new best friend; I took one the first night, actually slept, and had basically no nausea. I did have sensitivity to cold in my fingertips this time, just once when I took some strawberries out of the fridge, and that was annoying but not terrible. I get a weird sensation in my mouth when I take a first bite of food after not eating for a while, or a first sip of anything but water, like I'm dehydrated (which I might be a little, this regimen is dessicating). The fatigue hits me when the pump is about halfway through on day 2 and doesn't really let up til day 5. My hair is thinner but it's not falling out all together (not expecting it to).
I know it could be a lot worse. It could be something that isn't treatable or operable. 10 more courses still seems overwhelming but at least there is a light at the end of my tunnel. Tomorrow is day 5 and I'll feel normal, hopefully, for the week in between.
I don't think I've gone into the weirdness of having a port. Mine is implanted in my upper right chest wall. Having lost that bit of weight, it's pretty obvious unless my clothes are covering it. Mine is a dual-lumen power port. It has two round receptacles that make a decent little bulge under my skin. The tubing attached to the receptacles goes up over my collarbone towards my neck and the catheter ends somewhere near a major vein. I don't know exactly because I didn't want to know when they offered to tell me back when I gave my consent to the procedure. When they flush the port with saline - which they do whenever they access it, or de-access it, and before and after administering anything through it - I can usually taste it. I can taste some of the other medicines as well, like the heparin that is used before de-accessing to prevent clotting. It's way in the back of my throat and feels pretty weird. When it is accessed the needle mechanism protrudes about another half inch and is secured with some steri strips and a clear dressing that covers the whole apparatus, with just a small opening at the bottom for the external tubing that is attached to the needle.
A nurse has to access the port, but patients are often taught how to de-access it themselves, especially those undergoing my regimen who are at home with a pump. It saves you a trip to DFCI for what is essentially a 5-min appointment. We're not terribly far away, but accounting for traffic, we'd get 2-3 hours back in our day, every other week. So it sounded like a thing to try.
For the first course we had to come back since we didn't know how to do it. My oncology nurse did the de-accessing but she described the steps as she did them, and gave us the written procedures with pictures and a link to a video on the DFCI website. It isn't all that complicated: turn off the pump, clamp the tubing, disconnect the pump, sterilize the end of the needle tubing, un-clamp, flush with saline, flush with heparin, clamp, remove the dressing and steri strips, remove the needle, discard in sharps box, put the pump into a plastic hazardous materials bag, seal it, return it next time. The nurses do this in maybe three minutes and make it look incredibly easy.
For this second course I was not convinced I could do this myself so we came back again for the disconnect. My intention was to do it myself but with the nurse supervising. I thought that if I could do it once in a safe place, I'd be comfortable enough to do it at home. Lots of things were not as I expected:
- wearing purple nitrile gloves inhibits your ability to grasp things securely, like syringes of saline and heparin that fall on the ground and have to be replaced...
- you can't hold the end of the sterilized tubing and take the cap off a syringe at the same time, even with two hands, especially when wearing purple nitrile gloves
- pushing a syringe full of liquid into the already weird port is even weirder when you are doing it to yourself
- my neck isn't long enough for me to bend my head to see well the dressing I have to remove from the needle, carefully and slowly, so I don't pull it out all at once
- not only can I not push a needle into my body, I lack the will to pull one out, too.
And so next time we'll do it together and hopefully it will all go well.
Otherwise, it's day 4 and I'm tired, but overall this course was better than the first. It probably helps that I'm more recovered from the surgery now and am getting some strength back with my walks and commuting to work and all. I was able to work from home without too much trouble and without any naps! Ativan is my new best friend; I took one the first night, actually slept, and had basically no nausea. I did have sensitivity to cold in my fingertips this time, just once when I took some strawberries out of the fridge, and that was annoying but not terrible. I get a weird sensation in my mouth when I take a first bite of food after not eating for a while, or a first sip of anything but water, like I'm dehydrated (which I might be a little, this regimen is dessicating). The fatigue hits me when the pump is about halfway through on day 2 and doesn't really let up til day 5. My hair is thinner but it's not falling out all together (not expecting it to).
I know it could be a lot worse. It could be something that isn't treatable or operable. 10 more courses still seems overwhelming but at least there is a light at the end of my tunnel. Tomorrow is day 5 and I'll feel normal, hopefully, for the week in between.
Wednesday, October 14, 2015
Course 2 (of 12)
I'm back at Dana-Farber for the second course of treatment. This place is great but not terribly timely; lab was nearly an hour behind and that delays all the other appointments by about that much. We hadn't planned for daycare pickup as we thought we'd be out of here early enough today - we'll have to see when the pharmacy can get my custom-made drugs up here.
I do have the corner infusion room view today at least:
I am hopefully a little bit better prepared for this round. Being back at work is an excellent distraction; I wasn't nearly as anxious about today as I was for the first treatment. My port behaved fine for the blood draw. I got a prescription for Lorazepam (Ativan) for nausea and anxiety, though really it is to help me sleep the first night. While waiting for my infusion appointment I had an excellent discussion with a nutritionist here, who also gave me the name of an exercise physiologist that I'll hopefully meet the next time around. I'm hoping with my newfound nutrition tips and some advice from the physiologist I can get some of my muscle tissue back, or at least not lose any more.
And so I wait for my infusion to begin. I've been thinking about this word a lot the last couple of days: infusion. It's a word I typically associate with oils and vinegars and vodkas, not humans. Wikipedia does as well apparently:
I'm allowing toxic chemicals to remain suspended in my body for two days. I'm steeped in chemo. What a thing this is.
I do have the corner infusion room view today at least:
I am hopefully a little bit better prepared for this round. Being back at work is an excellent distraction; I wasn't nearly as anxious about today as I was for the first treatment. My port behaved fine for the blood draw. I got a prescription for Lorazepam (Ativan) for nausea and anxiety, though really it is to help me sleep the first night. While waiting for my infusion appointment I had an excellent discussion with a nutritionist here, who also gave me the name of an exercise physiologist that I'll hopefully meet the next time around. I'm hoping with my newfound nutrition tips and some advice from the physiologist I can get some of my muscle tissue back, or at least not lose any more.
And so I wait for my infusion to begin. I've been thinking about this word a lot the last couple of days: infusion. It's a word I typically associate with oils and vinegars and vodkas, not humans. Wikipedia does as well apparently:
Infusion is the process of extracting chemical compounds or flavors from plant material in a solvent such as water, oil or alcohol, by allowing the material to remain suspended in the solvent over time (a process often called steeping). An infusion is also the name for the resultant liquid. The process of infusion is distinct from decoction, which involves boiling the plant material, or percolation, in which the water passes through the material (as in a coffeemaker).
I'm allowing toxic chemicals to remain suspended in my body for two days. I'm steeped in chemo. What a thing this is.
Sunday, October 11, 2015
Normal, except for that cancer thing
Last week was the start of getting back to normal. I made it through an entire week of work; three days I was actually in the office. This weekend I drove my daughter to ballet; did the grocery shopping; caught up on the finances; played with the little guy; had lovely visits from friends; went out to dinner with the family; finally weeded the flowers in front of the house and started cleaning up the garden. I could do all these things without getting totally exhausted. I still need to rest more than I used to and I still catch myself tensed up and hunched over from time to time. But aside from the appointment on my calendar for the next course of chemotherapy, I almost, *almost* for one second forgot about that pesky cancer diagnosis. Unless I take more than a glance at my belly and it's snazzy new decorations, I almost, *almost* forget about the surgeries that stole my summer. Almost.
It's there though, that appointment, and I'm already feeling anxious about it. It's on a Wednesday this time since tomorrow is a holiday that Dana-Farber recognizes. All that really means is one of my blah days will be on the weekend. Because of that there's a chance I won't get to see my daughter's next play. Fingers crossed the pattern is the same as the first and the side effects fade by day five so I can catch her Sunday matinee.
Until then, I'm going to try not to think about it. Here's a silly picture of my kids to distract us.
It's there though, that appointment, and I'm already feeling anxious about it. It's on a Wednesday this time since tomorrow is a holiday that Dana-Farber recognizes. All that really means is one of my blah days will be on the weekend. Because of that there's a chance I won't get to see my daughter's next play. Fingers crossed the pattern is the same as the first and the side effects fade by day five so I can catch her Sunday matinee.
Until then, I'm going to try not to think about it. Here's a silly picture of my kids to distract us.
Tuesday, October 6, 2015
Back to work, from home...
I did make it to the office yesterday - progress! I was wicked anxious before I left the house; arriving at my office gave me a pretty huge mental and emotional boost. Nice to not feel like a recluse and see some friendly faces and take
back some of the work my excellent colleagues had taken up for me in my
absence.
Making it home was something of an ordeal though. It never occurred to me that I might be fairly active at work; I have a desk job after all. I guess I am up and about for meetings and whatnot more often than I realize. I also noticed I sit on the edge of my chair at work almost all the time, leaning forward or sitting straight up, while at home I mostly sit back and put my feet up on the windowsill under my desk. And of course, I've spent a whole lot of time just lying down the last six weeks. These things - and the fact that I clearly have not regained a lot of my strength quite yet - made for a long afternoon. I definitely got achy and sore. Even sitting back wasn't comfortable by the time I left. I have a decent walk to the subway from my office, and making it back at the end of the day was a struggle. I was definitely walking very slow, and got all tensed up and hunched like I used to when I first started walking after the second surgery. I became the annoying slow person I used to despise!!
But I survived and made it home and basically didn't move the rest of the evening. I decided before I fell asleep that I should work from home today instead of making the trek downtown. I woke up this morning feeling like a small truck had hit me so I think I made the right decision. Working from home was all good today. The afternoon still brought a little aching and soreness. Who would have thought sitting in a chair for a few hours would be so exhausting.
Tomorrow will be another work from home day. And then maybe a drive to work day. And then maybe I'll try the usual commute again. All in good time.
Making it home was something of an ordeal though. It never occurred to me that I might be fairly active at work; I have a desk job after all. I guess I am up and about for meetings and whatnot more often than I realize. I also noticed I sit on the edge of my chair at work almost all the time, leaning forward or sitting straight up, while at home I mostly sit back and put my feet up on the windowsill under my desk. And of course, I've spent a whole lot of time just lying down the last six weeks. These things - and the fact that I clearly have not regained a lot of my strength quite yet - made for a long afternoon. I definitely got achy and sore. Even sitting back wasn't comfortable by the time I left. I have a decent walk to the subway from my office, and making it back at the end of the day was a struggle. I was definitely walking very slow, and got all tensed up and hunched like I used to when I first started walking after the second surgery. I became the annoying slow person I used to despise!!
But I survived and made it home and basically didn't move the rest of the evening. I decided before I fell asleep that I should work from home today instead of making the trek downtown. I woke up this morning feeling like a small truck had hit me so I think I made the right decision. Working from home was all good today. The afternoon still brought a little aching and soreness. Who would have thought sitting in a chair for a few hours would be so exhausting.
Tomorrow will be another work from home day. And then maybe a drive to work day. And then maybe I'll try the usual commute again. All in good time.
Monday, October 5, 2015
Back to work
I'm on my way into the office for the first time in two months. I am slightly terrified.
Friday, October 2, 2015
Day 5 #WINNING
Today is day 5 of the first course of treatment, and man oh man is it way better than the last three days... especially yesterday, when I felt the most tired of all. Taking the Compazine (anti-nausea) helped the green feeling a little bit but it also made me so very sleepy. I took at least three naps, one basically in the middle of eating lunch; spilled chicken soup all over the place. The struggle is real.
But today! So far today is really stellar in comparison. No nausea yet, and not feeling overly tired or anything. I actually wanted to eat breakfast, which is awesome as I seem to have lost another couple of pounds, so need to start making up for the green days. The sensitivity to cold didn't seem to ever materialize for me - maybe I can eat a few ice cream sandwiches to bulk up.
I also called in to a meeting at work, and will do that one more time this afternoon. I have to say, clearing off my desk -- which has been completely covered in amazing get well cards from all over -- and hooking my home office back up was actually invigorating. I'm officially scheduled to start back this coming Monday 10/5. Not sure where my energy will be exactly, and I haven't gotten on a bus or a subway since before all this started, so may still be working from home to start. I'm hopeful that I'll make it downtown one or two times though - we'll see how it goes.
At first I envisioned coming into the office even when I had the pump connected, but now I don't think that will be feasible. Lots of things are awkward with it attached, and I can't get the pump wet, or the dressing over the port (read: cannot really shower normally), and if I don't have the strap around me sometimes I forget it's there. I only had one close call on day 2, when I had set it down on my desk while I checked some email, and when I got up I basically forgot it was there. Luckily the tug on the tubing reminded me before it came crashing down or pulled anything apart. Seems like just one thing too many to have to deal with in addition to a commute and everything else that's normal for an in-the-office day. Plus, if I'm taking my Compazine on those days like a good girl, I'm likely to need a nap at some unexpected time. I don't need any chicken soup spills in the office.
But today! So far today is really stellar in comparison. No nausea yet, and not feeling overly tired or anything. I actually wanted to eat breakfast, which is awesome as I seem to have lost another couple of pounds, so need to start making up for the green days. The sensitivity to cold didn't seem to ever materialize for me - maybe I can eat a few ice cream sandwiches to bulk up.
I also called in to a meeting at work, and will do that one more time this afternoon. I have to say, clearing off my desk -- which has been completely covered in amazing get well cards from all over -- and hooking my home office back up was actually invigorating. I'm officially scheduled to start back this coming Monday 10/5. Not sure where my energy will be exactly, and I haven't gotten on a bus or a subway since before all this started, so may still be working from home to start. I'm hopeful that I'll make it downtown one or two times though - we'll see how it goes.
At first I envisioned coming into the office even when I had the pump connected, but now I don't think that will be feasible. Lots of things are awkward with it attached, and I can't get the pump wet, or the dressing over the port (read: cannot really shower normally), and if I don't have the strap around me sometimes I forget it's there. I only had one close call on day 2, when I had set it down on my desk while I checked some email, and when I got up I basically forgot it was there. Luckily the tug on the tubing reminded me before it came crashing down or pulled anything apart. Seems like just one thing too many to have to deal with in addition to a commute and everything else that's normal for an in-the-office day. Plus, if I'm taking my Compazine on those days like a good girl, I'm likely to need a nap at some unexpected time. I don't need any chicken soup spills in the office.
Wednesday, September 30, 2015
Course 1 - pump free!
Okay, first infusion officially and completely done. I headed back to DFCI today to get the pump disconnected. A few minutes after 3pm it let out a high-pitched whine letting me know that it was empty. Luckily I was already in a comfy chair in the infusion center before that happened. My nurse showed me how to disconnect the tubing from my port, then flushed the port with saline, "locked" it with heparin, and de-accessed it (removed the needle). It is expected that I can do all that myself going forward, at home, to save me the trip in... I'm not convinced yet, but I'll get another training session next time.
So far it has not been terrible: some trouble sleeping the first night, thanks to one of the anti-nausea meds; noticeable yet tolerable nausea at various points since yesterday morning; not much of an appetite; generally tired and feeling kind of meh. I didn't take any of the additional prescribed nausea meds because I wanted to see how I really felt. After describing my last couple days to the nurse she advised me to take it - no reason not to eliminate that symptom completely if possible (I took it while I was there, and will do so through tomorrow). Now I wait and see how long it takes to bounce back.
I found the worst part to be the stupid pump. It reminded me too much of the hospital.
And now, maybe a nap...
So far it has not been terrible: some trouble sleeping the first night, thanks to one of the anti-nausea meds; noticeable yet tolerable nausea at various points since yesterday morning; not much of an appetite; generally tired and feeling kind of meh. I didn't take any of the additional prescribed nausea meds because I wanted to see how I really felt. After describing my last couple days to the nurse she advised me to take it - no reason not to eliminate that symptom completely if possible (I took it while I was there, and will do so through tomorrow). Now I wait and see how long it takes to bounce back.
I found the worst part to be the stupid pump. It reminded me too much of the hospital.
And now, maybe a nap...
Monday, September 28, 2015
Course 1 (of 12)
Well, the bad news is that I lost the fantastically detailed blog post that I wrote continuously since getting to DFCI this morning. The good news is that the worst thing that happened today was losing that blog post.
And as I'll never be able to recreate it, let me sum up:
- Arrived on time for labs only to be told they were running 45 minutes late. In reality it was more like an hour and 15 minutes. So the whole day was backed up a bit. It only really affected me eating lunch (which I did do eventually).
- I was more worried about my port behaving for the blood draw than almost anything else, believe it or not. But it did! Relief.
- The regimen I'm on is known as FOLFOX. After an appetizer of two different anti-nausea medications, the first two hours were an infusion of oxaliplatin (chemotherapy) and leucovorin (not chemo; a supplement that works with the chemo). The nurse advised me not to google these today as I was on info overload already - gentle readers, please do so on my behalf if you wish and I'll catch up with you in a day or two. The third is known as 5FU (that's right, eff you, cancer). I got a bolus of this at the infusion center and am now on the way home with my awesome pump full of f*you that will continuously administer the drug for about another 2 days.
I was told to expect to develop a sensitivity to cold basically anytime now, that will last a couple of days (thanks to the oxaliplatin). I was also told to expect fatigue to set in in another day or two. There are some other possible side effects but those are apparently the most common. At the moment I feel fine, and felt fine during the infusions... it's a waiting game.
So in the meantime, some pics - my view from my spot in the infusion room today:
Me getting infused:
And my new toy:
Let's see what tomorrow brings.
Friday, September 25, 2015
Out and about
I felt almost normal today... not like someone who received a stage IV cancer diagnosis and had two surgeries all in the last two months. I didn't sit around my house all day. Instead I did stuff normal people do all the time:
- I drove my car. First time since going back in the hospital the second time (over a month ago!). I'm glad to report I've not forgotten how.
- I got my hair cut. Fourth time chopping it off for Locks of Love. That's eight years of growing and cutting. Here are my braids for donation and my new look. Shortest and grayest one yet!
- I ate lunch out. It was just Au Bon Pain, but still, it was lunch out!
- I had an appointment for a breast ultrasound. I also had a "surprise" mammogram, as I was apparently due for one (but hadn't scheduled it). This was really nerve wracking; I wasn't sure if the portacath would be in the way, or the ostomy for that matter... sometimes you have to hold awkward positions against the machine, and I do not have a long torso, and just assumed all this would be in the way or would get pulled uncomfortably during all the boob mashing. In the end it wasn't that bad, but it did remind me of everything going on and I was all teary in between images. The ultrasound revealed lots of cysts but this wasn't really a surprise. Since I started regular mammograms, just two years ago, I've also had three ultrasounds and maybe 5-6 cysts aspirated (no bad results). I had one aspirated when I was 35 or 36 also - had an "early" mammogram as I had felt something, and thankfully it turned out to be nothing. (That traumatic experience resulted in an awesome de-stress / decompress dinner with my excellent friend Dean. Thanks again, Dean!). And since I've lost so much weight, the tissue was more dense than the last time around, which meant additional squishing and scanning to get a good look. Luckily, the doctor didn't see anything requiring aspiration this time so just another ultrasound for me in six months. Huge relief and glad to have this out of the way before treatment starts.
And then I came home and had a snack and watched some TV and all is well :) Looking forward to a relaxing weekend before heading back into the unknown.
- I drove my car. First time since going back in the hospital the second time (over a month ago!). I'm glad to report I've not forgotten how.
- I got my hair cut. Fourth time chopping it off for Locks of Love. That's eight years of growing and cutting. Here are my braids for donation and my new look. Shortest and grayest one yet!
- I ate lunch out. It was just Au Bon Pain, but still, it was lunch out!
- I had an appointment for a breast ultrasound. I also had a "surprise" mammogram, as I was apparently due for one (but hadn't scheduled it). This was really nerve wracking; I wasn't sure if the portacath would be in the way, or the ostomy for that matter... sometimes you have to hold awkward positions against the machine, and I do not have a long torso, and just assumed all this would be in the way or would get pulled uncomfortably during all the boob mashing. In the end it wasn't that bad, but it did remind me of everything going on and I was all teary in between images. The ultrasound revealed lots of cysts but this wasn't really a surprise. Since I started regular mammograms, just two years ago, I've also had three ultrasounds and maybe 5-6 cysts aspirated (no bad results). I had one aspirated when I was 35 or 36 also - had an "early" mammogram as I had felt something, and thankfully it turned out to be nothing. (That traumatic experience resulted in an awesome de-stress / decompress dinner with my excellent friend Dean. Thanks again, Dean!). And since I've lost so much weight, the tissue was more dense than the last time around, which meant additional squishing and scanning to get a good look. Luckily, the doctor didn't see anything requiring aspiration this time so just another ultrasound for me in six months. Huge relief and glad to have this out of the way before treatment starts.
And then I came home and had a snack and watched some TV and all is well :) Looking forward to a relaxing weekend before heading back into the unknown.
Wednesday, September 23, 2015
Lovanox and Oxycodone free!
Another one down and another one down... today was my last Lovanox injection (blood thinner). I'm now officially discharged from the visiting nurses. They were all wonderful - good listeners, compassionate, and thankfully not afraid of needles like me. Thank you, CareGroup Home Care, for taking such good care of me these last many weeks!
I'm also finally off the oxycodone. The last one I took was this past Saturday. Since then it's just been a little ibuprofen if I feel the need. In fact I just realized today I haven't taken anything, and took my walk already and everything. I will take that as a good sign.
I'm walking about a mile every day now. I'm still slow, but am improving, as the MapMyRun screenshot will attest. I'm also trying to get back to some simple yoga. After eight weeks of craziness I was appalled to discover I can no longer touch my toes!!! I used to be able to put my palms on the floor but now am a couple inches away from the floor all together. I also have a fear of raising my arms over my head, which I'm battling by raising my arms over my head every time thinking about it makes me nervous (all the time). This is in line with my mission to stand up straight. I'm getting better about it, though my default is still to hunch and protect the belly. Baby steps.
Otherwise - trying to relax these last few days before chemo begins and we get to know that unknown.
I'm also finally off the oxycodone. The last one I took was this past Saturday. Since then it's just been a little ibuprofen if I feel the need. In fact I just realized today I haven't taken anything, and took my walk already and everything. I will take that as a good sign.
I'm walking about a mile every day now. I'm still slow, but am improving, as the MapMyRun screenshot will attest. I'm also trying to get back to some simple yoga. After eight weeks of craziness I was appalled to discover I can no longer touch my toes!!! I used to be able to put my palms on the floor but now am a couple inches away from the floor all together. I also have a fear of raising my arms over my head, which I'm battling by raising my arms over my head every time thinking about it makes me nervous (all the time). This is in line with my mission to stand up straight. I'm getting better about it, though my default is still to hunch and protect the belly. Baby steps.
Otherwise - trying to relax these last few days before chemo begins and we get to know that unknown.
Monday, September 21, 2015
Chemo gets real...
I just scheduled my first chemo treatment for Monday 9/28 12:30pm. My oncologist has said it sometimes helps to have a date on the calendar, even if we end up moving it. I had called his office this morning to check in and see what date might make sense. Half an hour later the scheduler called me to get it on the books. She suggested either this Friday or next Monday as that was his next availability. I admit I had a small panic attack there on the phone... but then I said let's do Monday, and there it is.
She assured me there is no problem to push it out if I think I won't be ready. I don't know that I would every be ready -- how is anyone ready for chemotherapy? Now I have an appointment in my calendar that I can stare at and think about. Hoping that date will stick, as thinking about it for a whole other week might make the anxiety worse.
Aaaaggghhhh...
She assured me there is no problem to push it out if I think I won't be ready. I don't know that I would every be ready -- how is anyone ready for chemotherapy? Now I have an appointment in my calendar that I can stare at and think about. Hoping that date will stick, as thinking about it for a whole other week might make the anxiety worse.
Aaaaggghhhh...
Saturday, September 19, 2015
Catastrophizing
I mentioned in another post about the nerve blocks that I had for a few days post-op as part of my pain management, and how they were removed somewhat suddenly, and how anxious that made me. At that point, I had had enough of pain -- every little thing that had to happen prompted the question "Will it hurt?" And knowing that those blocks made a difference, I was especially worried I would plummet into some awful dark place where no drug could save me.
I said this in so many words to the anesthesiologist who was there to take them out. After assuring me that removing the small catheters wouldn't hurt a bit (it didn't) she told me about catastrophizing. I had never heard of this before. She told me, in a very direct and no-nonsense way, that this was not a path I wanted to go down, that always expecting the worst pain could really mess with your mind and potentially exaggerate how I experience pain, how it could turn into a chronic condition. She said all this while tending to the task at hand and let me know there was quite a bit of literature on the subject, if I was interested.
And when she was finished, she stayed for another ten minutes and gave me this awesome pep talk. I'm not sure she intended to but that's definitely what it felt like. She validated my anxiety to a certain extent; I can still see her standing in front of me, exclaiming, "Of course you're going to have some pain - they cut you up!" Then she talked about believing in your body's ability to heal, your ability to tolerate more than you think you can, your capacity to handle discomfort and pain when it happens, and not falling into the trap of expecting it to happen all the time. It sounds cheesy but her primary advice was to believe in yourself - to have confidence that the pain will not last forever, that you can manage it, that you will heal, and to believe this deep down and view each day of recovery (and beyond) through this lens.
I've been thinking about her a lot the last couple of days. I think I am nearly over my recovery hump, mostly because I'm thinking less about how I'll get through each day and more about the future. Soon I will have a new start date for chemotherapy and I'm already worried about what will happen when they push a bunch of toxic chemicals into my body. Maybe not pain, per se, but other side affects that will be tiring or annoying or uncomfortable or weird or scary, or all of the above. But there isn't any sense in worrying about it; whatever is going to happen will happen. If I want to eliminate the disease it's something I need to do.
I also know it's normal to be anxious and scared and depressed -- it's not even two months since the first visit to the ER, so much has happened and changed, so suddenly -- that's plenty to mess with your mind. I'm having my fair share of tears. And I'm trying to remember that hopefully this is the beginning of the end of this craziness. I'd love for whomever is reading this to help me remember that, too.
I said this in so many words to the anesthesiologist who was there to take them out. After assuring me that removing the small catheters wouldn't hurt a bit (it didn't) she told me about catastrophizing. I had never heard of this before. She told me, in a very direct and no-nonsense way, that this was not a path I wanted to go down, that always expecting the worst pain could really mess with your mind and potentially exaggerate how I experience pain, how it could turn into a chronic condition. She said all this while tending to the task at hand and let me know there was quite a bit of literature on the subject, if I was interested.
And when she was finished, she stayed for another ten minutes and gave me this awesome pep talk. I'm not sure she intended to but that's definitely what it felt like. She validated my anxiety to a certain extent; I can still see her standing in front of me, exclaiming, "Of course you're going to have some pain - they cut you up!" Then she talked about believing in your body's ability to heal, your ability to tolerate more than you think you can, your capacity to handle discomfort and pain when it happens, and not falling into the trap of expecting it to happen all the time. It sounds cheesy but her primary advice was to believe in yourself - to have confidence that the pain will not last forever, that you can manage it, that you will heal, and to believe this deep down and view each day of recovery (and beyond) through this lens.
I've been thinking about her a lot the last couple of days. I think I am nearly over my recovery hump, mostly because I'm thinking less about how I'll get through each day and more about the future. Soon I will have a new start date for chemotherapy and I'm already worried about what will happen when they push a bunch of toxic chemicals into my body. Maybe not pain, per se, but other side affects that will be tiring or annoying or uncomfortable or weird or scary, or all of the above. But there isn't any sense in worrying about it; whatever is going to happen will happen. If I want to eliminate the disease it's something I need to do.
I also know it's normal to be anxious and scared and depressed -- it's not even two months since the first visit to the ER, so much has happened and changed, so suddenly -- that's plenty to mess with your mind. I'm having my fair share of tears. And I'm trying to remember that hopefully this is the beginning of the end of this craziness. I'd love for whomever is reading this to help me remember that, too.
Friday, September 18, 2015
Walking
I didn't make it to the post office the other day - anxiety got the best of me (more on that later) - but I did today! I'm still on my way home. I found a bench in the shade and am taking a quick rest before I finish the last quarter mile on the Minuteman. Nice late afternoon sun rays on all the cyclists going by. I used to be one of them - maybe I'll recover enough to manage a short ride before the real cold weather gets here.
I don't carry my phone with me everywhere, especially in my house, but this walk is a new personal record for Steps and Distance since coming home from the second surgery:
Pretty funny how those graphs reflect reality... 8/27 was the surgery, and my phone was on my bedside table for the next six days. Came home on 9/2, outing for staple removal on 9/11, and first "real" walk was 9/14. Maybe I should look at this more often...
Flights climbed is bogus though - I climb my stairs at least 10 times a day, but again my phone isn't always with me. Just so y'all know I'm not a total slacker.
Time to get all the way back home...
Thursday, September 17, 2015
3 weeks post-op deserves dinner out!
My post-op follow up appointment with the surgeon today was all good -- incision and wounds healing well, pain well managed (not much of it left, even), ostomy working as expected -- bottom line is there are no concerns about me moving ahead with chemotherapy on whatever date my oncologist and I work out. She expects I'll go through the full treatment regimen regardless, though at this point I'm not sure what that is. Originally it was 12 courses of chemotherapy, a 48-hour infusion about every other week, but we'll see if anything has changed given the mass is removed and we're now trying to destroy whatever might be left. According to the pathology there are some "scattered atypical cells suspicious for carcenoma" on my right lateral pelvic side wall. So that's what's left.
The pathology report is quite something. I don't think I've ever had as strong an urge to google so many words at once as when I read the diagnosis in this report. And now having googled a bunch, I am maybe only today realizing the havoc this stupid cancer wreaked on my insides: lots of acute/chronic inflammation, abscess, salpingitis, serositis, adhesions, and of course the tumor which "invades through muscularis propria into pericolonic/perirectal tissue and subserosa." My right ovary was something like four times its normal size and the tissue basically replaced with the "metastatic colonic adenocarcinoma." Yeah.
And I only got the first three pages -- the remaining ten pages of "gross description" were not provided, which is fine by me, as the one paragraph starting that section on the third page I did get was way more information than I needed.
The report also has the AJCC (American Joint Committee on Cancer) Classification: at least pT3 N2a M1b
According to info on the American Cancer Society website, it means the following:
T3: The cancer has grown through the muscularis propria and into the outermost layers of the colon or rectum but not through them. It has not reached any nearby organs or tissues.
N2a: Cancer cells are found in 4 to 6 nearby lymph nodes.
M1b: The cancer has spread to more than 1 distant organ or set of distant lymph nodes, or it has spread to distant parts of the peritoneum (the lining of the abdominal cavity).
All that together results in a stage grouping of Stage IVB. See how much we've learned today??
Since we weren't sure how long the appointment would be and traffic around the Longwood medical area is always crazy, we took our daycare friends up on an offer to pick Connor up and watch him for a bit. My husband and I took the time we did have to enjoy a dinner out, first time since before I went back into the hospital. It's the most normal I've felt since the end of July :) And so I'll end this post with a decent 3-week post-op photo from our date:
The pathology report is quite something. I don't think I've ever had as strong an urge to google so many words at once as when I read the diagnosis in this report. And now having googled a bunch, I am maybe only today realizing the havoc this stupid cancer wreaked on my insides: lots of acute/chronic inflammation, abscess, salpingitis, serositis, adhesions, and of course the tumor which "invades through muscularis propria into pericolonic/perirectal tissue and subserosa." My right ovary was something like four times its normal size and the tissue basically replaced with the "metastatic colonic adenocarcinoma." Yeah.
And I only got the first three pages -- the remaining ten pages of "gross description" were not provided, which is fine by me, as the one paragraph starting that section on the third page I did get was way more information than I needed.
The report also has the AJCC (American Joint Committee on Cancer) Classification: at least pT3 N2a M1b
According to info on the American Cancer Society website, it means the following:
T3: The cancer has grown through the muscularis propria and into the outermost layers of the colon or rectum but not through them. It has not reached any nearby organs or tissues.
N2a: Cancer cells are found in 4 to 6 nearby lymph nodes.
M1b: The cancer has spread to more than 1 distant organ or set of distant lymph nodes, or it has spread to distant parts of the peritoneum (the lining of the abdominal cavity).
All that together results in a stage grouping of Stage IVB. See how much we've learned today??
Since we weren't sure how long the appointment would be and traffic around the Longwood medical area is always crazy, we took our daycare friends up on an offer to pick Connor up and watch him for a bit. My husband and I took the time we did have to enjoy a dinner out, first time since before I went back into the hospital. It's the most normal I've felt since the end of July :) And so I'll end this post with a decent 3-week post-op photo from our date:
Wednesday, September 16, 2015
Missing the old normal
One of these days I want to wake up and feel normal - not the new weird scary normal, but the old comfortable normal. I want to get up out of bed without thinking about it, eat whatever I want without thinking about it, get on my bike again, pick up my son, go take a walk or get on the bus or drive my car without the now customary period of mulling over whether I'm up for it or not. I am not used to so much reflection about every little simple activity in my day. It is starting to drive me a little bit crazy.
But, I think I'm still making progress, and am trying to get back to my real normal as best I can. Last Saturday I went to a barbecue at my manager's house and saw many of my IT colleagues, which was wonderful... I sat the whole time, but still, an outing! (I am grateful for the leave I'm currently on to recover, but I'll admit I do miss work, just a little bit.) On Monday I took a walk with my daughter to the tennis courts down the street - here's our first-walk-out-of-the-house selfie:
Yesterday I took the same walk all by myself. Today I am considering walking .7 miles to the post office and the bank - playing that by ear, but I think I could do it, especially if I take a break before coming back. I'll have to mull that over later and see.
So that's one goal down. I haven't yet gone a day without the oxycodone (maybe today will be the day). I still have to consciously straighten up every time I stand or start walking (very strange for me). I've removed some of the remaining adhesive - sneaky stuff, that is, hiding out where you least expect it.
And now I have one new goal: GAIN WEIGHT. I stepped on the scale a couple days ago and was shocked to realize I've lost a little over twenty pounds since all this started. I could have stood to lose a few I'm sure, but twenty is not what I was shooting for. All the visiting nurses have recommended Ensure. Maybe going to the store to buy some should be my walk for today instead...
Tomorrow is my post-op follow up appointment with the surgeon. Hoping for an all clear, or positive reinforcement, or something. And then, if all goes well, I'm having a dinner date with my awesome husband :)
But, I think I'm still making progress, and am trying to get back to my real normal as best I can. Last Saturday I went to a barbecue at my manager's house and saw many of my IT colleagues, which was wonderful... I sat the whole time, but still, an outing! (I am grateful for the leave I'm currently on to recover, but I'll admit I do miss work, just a little bit.) On Monday I took a walk with my daughter to the tennis courts down the street - here's our first-walk-out-of-the-house selfie:
Yesterday I took the same walk all by myself. Today I am considering walking .7 miles to the post office and the bank - playing that by ear, but I think I could do it, especially if I take a break before coming back. I'll have to mull that over later and see.
So that's one goal down. I haven't yet gone a day without the oxycodone (maybe today will be the day). I still have to consciously straighten up every time I stand or start walking (very strange for me). I've removed some of the remaining adhesive - sneaky stuff, that is, hiding out where you least expect it.
And now I have one new goal: GAIN WEIGHT. I stepped on the scale a couple days ago and was shocked to realize I've lost a little over twenty pounds since all this started. I could have stood to lose a few I'm sure, but twenty is not what I was shooting for. All the visiting nurses have recommended Ensure. Maybe going to the store to buy some should be my walk for today instead...
Tomorrow is my post-op follow up appointment with the surgeon. Hoping for an all clear, or positive reinforcement, or something. And then, if all goes well, I'm having a dinner date with my awesome husband :)
Sunday, September 13, 2015
Healthcare, revisited
Thanks for all the great comments on my last post about what this care might cost. The author of the Time article, Steven Brill, also has a book that was published earlier this year, America's Bitter Pill, a copy of which I just got. In between the article and the book it appears he experienced serious health issues of his own, giving him another perspective from which to analyze the topic.
I'm only on chapter three so far but highly recommend it - very articulate and well-researched. I'm expecting to learn quite a bit.
http://www.americasbitterpill.com
Goals
Thinking about my ongoing recovery and arrived at these goals for near future, like this week:
1. Stop taking oxycodone. I'm down to a single 5mg pill just once a day, usually in the late morning. I haven't taken any today yet actually but starting to feel the need; we'll see.
2. Stand up straight. I'm still a bit nervous every time I move, and when I stand up and walk my habit is to hunch over to protect my belly. My back will start hurting (this happened after first surgery) so need to start straightening up.
3. Get all this freaking adhesive off my body. The tape has been gone for weeks but this stuff lasts FOREVER.
4. Take a "real" walk. Outside, even. Not too far, but farther than the backyard. I miss just getting up and going. And right now a commute to work seems unimaginable - a bus, train, and almost-mile walk to get to the office???
Baby steps...
Friday, September 11, 2015
Staple free!
Well, one more step forward... the staples in my primary incision are now gone and replaced with steri strips (little pieces of sticky bandage that are supposed to fall off by themselves in a few days). Given everything else going on with my belly, I admit I barely noticed the staples were there, despite the incision being fairly long. That said it does seem a bit more comfortable to bend now.
Of course nothing can be simple. All week I've asked my visiting nurses about removing staples since I've never had them before - I'm a complete ninny now and needed reassurance that this would be a quick and painless experience. They all assured me it would be. For the most part this was the case; a tug here, tiny sting there, until the very last one. That one made me yelp when the technician tried to remove it. Apparently the staples can start to twist and bend the wrong way, particularly when they are "ready" to come out. She had to get a second technician to assist and they spent a few minutes twisting and bending it back so they could get it out. Unexpected and not much fun, but it's out!
I also have to have a daily injection of Lovenox, a blood thinner, as a preventative measure against blod clots. Since I am a ninny now, and also since I know it's temporary, I can't bring myself to do this on my own - I need the visiting nurses to do this for me. However on the days I have an appointment, I'm not eligible for a visit. This meant I had to find someone at Brigham who could help with it today. The nurse wasn't in yet at the surgical office where I was for the staple removal, so I ended up going to my oncologist's office and asking if they could help (luckily Dana-Farber is right next door to BWH and connected via indoor pedestrian bridges). They could - but even though I had brought the pre-filled syringe with me, they had to still get an order for the one dose from my doctor, have the pharmacy bring it up, and administer that injection instead of the one I brought (for all kinds of good reasons, I'm sure). A lot of fuss for a 2-second injection, but it's my own fault for being a ninny and not planning ahead.
Thanks to the injection, I did get to see the infusion area where I will be for treatments. I guess it is cozy enough for what happens there. But I'll wait and think about that once we have a new start date on the calendar.
Of course nothing can be simple. All week I've asked my visiting nurses about removing staples since I've never had them before - I'm a complete ninny now and needed reassurance that this would be a quick and painless experience. They all assured me it would be. For the most part this was the case; a tug here, tiny sting there, until the very last one. That one made me yelp when the technician tried to remove it. Apparently the staples can start to twist and bend the wrong way, particularly when they are "ready" to come out. She had to get a second technician to assist and they spent a few minutes twisting and bending it back so they could get it out. Unexpected and not much fun, but it's out!
I also have to have a daily injection of Lovenox, a blood thinner, as a preventative measure against blod clots. Since I am a ninny now, and also since I know it's temporary, I can't bring myself to do this on my own - I need the visiting nurses to do this for me. However on the days I have an appointment, I'm not eligible for a visit. This meant I had to find someone at Brigham who could help with it today. The nurse wasn't in yet at the surgical office where I was for the staple removal, so I ended up going to my oncologist's office and asking if they could help (luckily Dana-Farber is right next door to BWH and connected via indoor pedestrian bridges). They could - but even though I had brought the pre-filled syringe with me, they had to still get an order for the one dose from my doctor, have the pharmacy bring it up, and administer that injection instead of the one I brought (for all kinds of good reasons, I'm sure). A lot of fuss for a 2-second injection, but it's my own fault for being a ninny and not planning ahead.
Thanks to the injection, I did get to see the infusion area where I will be for treatments. I guess it is cozy enough for what happens there. But I'll wait and think about that once we have a new start date on the calendar.
Wednesday, September 9, 2015
First week home
I have now been home for one week. Recovering from the second surgery has been quite different from the first. I was back to work (remotely) 6 days after the first surgery. 6 days after the second one, I had only just been discharged. I'm trying to remember that so I don't think I'm not making any progress this time around.
There are a few things I've managed to accomplish though - as of today, I can:
-- sleep through the night without additional pain meds (no more setting my alarm for 3am!)
-- walk up and down the stairs without my cane
-- take a more or less normal shower
-- empty the dishwasher (but no lifting too many plates at a time...)
-- get up the outside stairs to hang out on our back ledge patio
-- pick the tomatoes in the garden
-- make it through the day with a much smaller dose of oxycodone than when I first came home
Still not allowed to pick up my little guy but trying to snuggle him as much as possible. And I still haven't taken a "real" walk, just puttering around the house, but I guess that's good enough for the moment. I also can't quite bend forward all the way to pick stuff up but can work around that to some extent (yoga is handy).
On Friday I have an appointment to get my incision staples removed. That will be the first time I've left the house since I came home. Fingers crossed.
There are a few things I've managed to accomplish though - as of today, I can:
-- sleep through the night without additional pain meds (no more setting my alarm for 3am!)
-- walk up and down the stairs without my cane
-- take a more or less normal shower
-- empty the dishwasher (but no lifting too many plates at a time...)
-- get up the outside stairs to hang out on our back ledge patio
-- pick the tomatoes in the garden
-- make it through the day with a much smaller dose of oxycodone than when I first came home
Still not allowed to pick up my little guy but trying to snuggle him as much as possible. And I still haven't taken a "real" walk, just puttering around the house, but I guess that's good enough for the moment. I also can't quite bend forward all the way to pick stuff up but can work around that to some extent (yoga is handy).
On Friday I have an appointment to get my incision staples removed. That will be the first time I've left the house since I came home. Fingers crossed.
Sunday, September 6, 2015
What does this really cost?
I've become a little obsessed by the financial aspect of all this hospitalization and medical care. I posted a rant of sorts about health insurance the night after my second surgery, and am still baffled by how health care actually works in this country. Again, I am extremely fortunate - I have a good job with a great company that provides excellent health insurance to its employees. I don't want to think about where I'd be if that weren't the case. Just going through everything I've gone through so far has been stressful enough. I can't imagine the added stress of worrying about a pile of medical bills. It is hard to believe that we put anyone in that situation. You can't heal with that kind of stress.
So, I'm trying to keep track. My primary insurance provider (Blue Cross Blue Shield) sends a statement for every claim to explain how it arrived at some amount I owe a particular provider. Sometimes I then also get a bill from the provider for that amount. Last, I'll get a separate claim statement from my employer's supplemental insurance plan indicating that the amount has been paid. If I have a copay for a doctor visit or medication, I pay it, and that is usually reflected as well. This all happens without me doing anything.
What I don't get is this idea of a "discount" that is given to the insurance company. It's different for different things. For example, the cost of anesthesia for my first surgery at the end of July was $1,680. That is what the provider charged. According to the BCBS statement, a "Blue Cross discount" was applied of 905.52 (54%), for an adjustment amount of 774.48. Some part of this is "covered" - in this case, 619.58 (80%). End result is that I owe 154.90 - 20% of the adjusted amount. This charge was also considered "in network;" I assume it would be different (more) if it was out of network.
My owing 20% of the adjusted amount is consistent on the BCBS statements and in line with what I know about my policy. But the "discount" applied is all over the place. I expect this is what the insurance companies are negotiating with providers... does this mean the same anesthesia provided to me would cost something different if it was provided to someone with a different insurance plan? Is Mount Auburn charging everyone the same initial cost and then all the insurance companies negotiate different discounts, for different types of costs? How do they come up with these, how do they justify them? How can the same anesthesia cost me one amount, and someone else another amount, just because of the insurance company we have? Does it actually cost $1,680 for that service, or is that amount inflated because it is expected that an insurance company is going to pay some portion of it?
I've never really paid much attention to this so maybe these are naive questions. But I really don't get it. The insurance companies seem to have all kinds of power here, and all the money, and I think we must be getting the raw end of the deal. It's hard to sort out.
All that said I'm really glad that anesthesia was provided. To date, out of pocket we have spent just under $500, mostly on hospital parking. I can't complain. But I do worry about what other people have to go through and wonder why this works the way it does.
So, I'm trying to keep track. My primary insurance provider (Blue Cross Blue Shield) sends a statement for every claim to explain how it arrived at some amount I owe a particular provider. Sometimes I then also get a bill from the provider for that amount. Last, I'll get a separate claim statement from my employer's supplemental insurance plan indicating that the amount has been paid. If I have a copay for a doctor visit or medication, I pay it, and that is usually reflected as well. This all happens without me doing anything.
What I don't get is this idea of a "discount" that is given to the insurance company. It's different for different things. For example, the cost of anesthesia for my first surgery at the end of July was $1,680. That is what the provider charged. According to the BCBS statement, a "Blue Cross discount" was applied of 905.52 (54%), for an adjustment amount of 774.48. Some part of this is "covered" - in this case, 619.58 (80%). End result is that I owe 154.90 - 20% of the adjusted amount. This charge was also considered "in network;" I assume it would be different (more) if it was out of network.
My owing 20% of the adjusted amount is consistent on the BCBS statements and in line with what I know about my policy. But the "discount" applied is all over the place. I expect this is what the insurance companies are negotiating with providers... does this mean the same anesthesia provided to me would cost something different if it was provided to someone with a different insurance plan? Is Mount Auburn charging everyone the same initial cost and then all the insurance companies negotiate different discounts, for different types of costs? How do they come up with these, how do they justify them? How can the same anesthesia cost me one amount, and someone else another amount, just because of the insurance company we have? Does it actually cost $1,680 for that service, or is that amount inflated because it is expected that an insurance company is going to pay some portion of it?
I've never really paid much attention to this so maybe these are naive questions. But I really don't get it. The insurance companies seem to have all kinds of power here, and all the money, and I think we must be getting the raw end of the deal. It's hard to sort out.
All that said I'm really glad that anesthesia was provided. To date, out of pocket we have spent just under $500, mostly on hospital parking. I can't complain. But I do worry about what other people have to go through and wonder why this works the way it does.
Friday, September 4, 2015
Little things
Tonight, I washed my hair. Kind of silly but also kind of a milestone.
For those who don't know, the last several years I've been growing my hair out long - takes about two years - then cutting it off and donating it to Locks of Love. This year will be my fourth donation. I usually cut it in October, but may do it as soon as I can tolerate sitting "normally" for an extended period again, maybe in a couple of weeks. As I understand it the chemo I will get does not have the side affect of hair loss (or at least a very low risk) but I may as well be prepared just in case.
As a friend of mine once said, so much fuss about a dead protein... may be easier to be rid of it regardless!
Thursday, September 3, 2015
Catching up
I'm attempting to readjust to home by catching up on mundane household tasks - putting away laundry, opening mail, paying bills, that kind of excitement. In doing this I've realized one unexpected pro of being in the hospital
for three of the last six weeks: there are no charges on my credit
card!!
I can't do very much at once, especially if it involves standing or walking around, but I did take three "walks" to the bedroom on the opposite side of the house. I may venture down the stairs for dinner, too. Coming up was okay; hopefully going down isn't too much harder, especially with my new trusty cane (we have an old house with very steep stairs). I also managed to stay on top of my meds schedule today and that makes a HUGE difference. I'm done with all my antibiotics now, just pain meds are left. Hoping I can cut back on those in the not too distant future. Just need... less pain.
I also realize I kind of missed summer. I still haven't really processed everything that has happened since the last week of July. Everything changed so suddenly and drastically, without warning, without reason. One of these days I'll absorb it.
I can't do very much at once, especially if it involves standing or walking around, but I did take three "walks" to the bedroom on the opposite side of the house. I may venture down the stairs for dinner, too. Coming up was okay; hopefully going down isn't too much harder, especially with my new trusty cane (we have an old house with very steep stairs). I also managed to stay on top of my meds schedule today and that makes a HUGE difference. I'm done with all my antibiotics now, just pain meds are left. Hoping I can cut back on those in the not too distant future. Just need... less pain.
I also realize I kind of missed summer. I still haven't really processed everything that has happened since the last week of July. Everything changed so suddenly and drastically, without warning, without reason. One of these days I'll absorb it.
Wednesday, September 2, 2015
Home
Made it home. Made it up the stairs. All scrips are filled. Trying to stay on top of meds without going nuts, keep walking without getting overtired. Took my celebratory coming home nap already. Feel like I could sleep for a year.
Over and out for today... thanks all for the support and good wishes.
Hard to believe I went through this door nearly two weeks ago:
Homeward bound
Surgical team has cleared me to go home! It's always great to hear that, and then immediately terrifying. So many questions and little things that will temporarily be big things - flat bed that's harder to get in & out of, stairs, clothes that won't bother the incisions, injections I'll have to give myself (surprise), scheduling all the meds... argh.
Also turns out there was a friendly feud between the surgery and infectious disease teams. ID wants me to finish out a certain course of antibiotics but surgery wants me to go home. Apparently there was a compromise and I should be able to finish whatever antibiotic is needed by mouth. That said there is still something cranking away on my IV - I sense not everyone is on the same page yet...
Well, let's see if we can figure out how to get this show on the road, or pause it if needed...
Tuesday, September 1, 2015
Stage IV
My surgeon received the pathology today and confirmed the tumor on my colon was perforated and the cancer had metastasized to both the right and left ovaries. The uterus was unaffected. Four lymph nodes were affected out of the twenty-something they removed. She had also seen something on the small intestine but turned out to be just a pus like substance, not tumor. There is some evidence that cancer cells remain on the right pelvic wall. She'll confirm with my oncologist but chemotherapy is still the expected next step once I've recovered from this surgery, possibly followed by radiation.
Oh, and she removed my appendix too. Package deal.
No real surprises, I suppose - we always knew it was stage III or IV. What a lot of internal real estate to remove at once.
So now to recover already!
Less is less
During surgery last week they put in two nerve blocks, on the right and left of my abdomen, to help with pain. They are very similar to an epidural just in a different place. The medication flows directly into the catheters. These were two of my many tubes.
On Sunday one of the connections became disconnected and no one noticed for a while. It probably came loose when I moved from the bed to the chair. This was the day of my big walk, and after sitting in the chair for a couple hours I realized I felt pretty lousy and was not sure why, and worried about walking when I felt that way. When a nurse came to check vitals and placed the blood pressure cuff, I noticed my gown was soaking wet; the medicine had been dripping on the chair for a couple hours.
I got re-connected and in a little while felt much better again. So I knew what a difference the blocks were making. Yesterday they removed them all together and I was very nervous about the pain getting worse, but it held steady most of the day. I even didn't take the full dose of my oral pain meds thinking I didn't need it.
That was a mistake. Last night was long and the incision seemed to just radiate and throb all night. I finally had to ask for the "backup" IV meds at 5am just to get some sleep. I am trying to get back on track now and make sure I take the full dose every time, on time. I am all for two fewer tubes but I wish it could have been a smoother transition.
Little speed bump. And I keep remembering I'm just trying to get home so I can recover fully from this surgery. I haven't even started chemo. I don't even know what else is coming for me.
Today might be a long day.
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