Yesterday was post-op appointment & oncology followup day. First stop was my surgeon's office. She was very pleased with how the incision was healing and happily removed my staples. I took an oxycodone before we left the house, just in case, but this time there weren't any stubborn ones to cause me undue pain. We also got the ball rolling for the next and hopefully last procedure to reverse the ileostomy. I am very much looking forward to having all of my internal organs back inside where they belong. I will have a procedure a week or two ahead of time to check how my reconnected colon is healing, as an extra precaution, and if all is well, we proceed.
She also gave me the pathology results for the four specimens submitted from my surgery. All were "negative for tumor." She expressed what very good news that was. That's all I needed to know about that.
Next was the lab for my now routine 3-month blood work, ahead of the oncology followup. When you check in for the lab they always ask you if you have a port; this was the first time I could say "no!" However it turns out I'm still a needle ninny when someone else is wielding the needle. I had a moment of flushing and uncertainty when the technician moved the needle ever so slightly, after it was in, and also a pre-op flashback. It was fine in the end but I did have to sit an extra minute to make sure I was okay to stand up. Who would have thought it's easier to have a needle in a device in your chest than in your arm. Weird.
Last was my oncology followup, also routine and without issue. The level of tumor marker was normal (read: negligible). I was asked about my neuropathy and realized it's barely in my feet anymore at all. It left myfingers a few months back and is now only in the very tips of my toes. This is all good news.
I am trying to not take any oxycodone now. It's hard. Everything is tight, and if I sit too long or walk too much, everything aches - not just the incision site or the ileostomy but all the other muscles I subconsciously clench whenever I move. I have one more week of medical leave before I go back to work (remote to start) and need to figure out the right balance of moving and not moving, being upright and being horizontal. Abdominal incisions suck.
Friday, March 10, 2017
Saturday, March 4, 2017
Third time's a charm
I feel I am now a surgical recovery expert. This time around hasn't been anywhere near as terrifying as the last time, at least on the post-op side of things (pre-op side was definitely more terrifying). The pain has not been as bad despite having nearly the exact same incision; the number of internal organs they remove does make a difference. Surgery was also only half as long as last time and I was not super sick going into it. Staples are still uncomfortable and I'm walking with a hunch again but do not need my cane, at least not around the house. Last night I had the first really good night's sleep I've had since the pre-op appointments. This morning I took one less oxycodone and I'm not dying. I can raise my arms above my head, but don't know yet if I can still
touch my toes. I'll have to wait for staples to come out before I check
(hurts too much to bend that far). I am wearing my Fitbit again and each day trying to get more steps than the day before. This isn't saying much - the first day I only took 591 steps. I'm looking to break 1,000 today. Tomorrow I might even walk outside.
I am also no longer a needle ninny. I went home with three weeks' worth of Lovanox injections, same as last time, but this time I AM INJECTING MYSELF. What?!? Yes, it's true. I can now stick a needle in my own body, albeit an extremely small needle that feels like almost nothing, containing a small amount of liquid that doesn't sting. On the day I was discharged the nurses did a teaching with me and had me do the first one. I sat on the edge of the bed with the needle pointing at my leg for fifteen minutes before I had the courage to push it in. I waited for the visiting nurse the first two days at home to make sure I could still do it (I could) and yesterday I did the first one all by myself. I guess after a cancer diagnosis, chemo, radiation, abnormal anatomy, and three surgeries, a little needle stick isn't a big deal.
I am also no longer a needle ninny. I went home with three weeks' worth of Lovanox injections, same as last time, but this time I AM INJECTING MYSELF. What?!? Yes, it's true. I can now stick a needle in my own body, albeit an extremely small needle that feels like almost nothing, containing a small amount of liquid that doesn't sting. On the day I was discharged the nurses did a teaching with me and had me do the first one. I sat on the edge of the bed with the needle pointing at my leg for fifteen minutes before I had the courage to push it in. I waited for the visiting nurse the first two days at home to make sure I could still do it (I could) and yesterday I did the first one all by myself. I guess after a cancer diagnosis, chemo, radiation, abnormal anatomy, and three surgeries, a little needle stick isn't a big deal.
Tuesday, February 28, 2017
Surgery (3 of 4)
Once upon a time I had an emergency transverse loop colostomy to relieve extreme blockage in my gastrointestinal system due to a great big old cancerous tumor (#1). About a month later, I had another emergency surgery to remove the great big tumor that had perforated and metastasized and was kind of exploding my ovary with infection, and a bowel resection and a total hysterectomy and an appendectomy, and a reversal of the first colostomy which was replaced with an end colostomy (#2); that was The Big Surgery. Then I decided to take a break from surgery, shake things up with some chemo and radiation, and everything was very successful. I did some exercise and raised some money and went for a really long walk and contemplated the wonder of it all.
Maybe I could have stayed away; maybe I could have resisted the lure of the OR and anesthesia's siren song. In the end, a chance at having more or less normal anatomy was too enticing, and I decided, on purpose, to go for surgery #3: The Re-Connection.
I wasn't expecting this one to be a blockbuster like #2. The previews totally gave away the story, and the couple of plot twists they managed to sneak in were pretty vanilla. I mean, probably lots of people go all vasovagal on the anesthesia team when they put in the first IV, and lose literally every drop of super-Gatorade that was supposed to enhance recovery after surgery before the surgeon even shows up for work. And do that in front of their 5-year-old son, who had to come with because you had to be there at 5:30am, and oh yeah it's his birthday too! It's okay honey, mommy's fine, really...
There was some comic relief after getting the epidural - which went totally fine - when the senior anesthetist validated its placement by poking me with a tiny yellow plastic toy sword. Good one. It was even funnier a few hours after surgery when they wanted me to stand up and didn't think I should be in so much pain and then did the big bag of ice test and realized the epidural was only working on my left side. Super jokesters, those pain team dudes! Seriously, I only wanted the left side numb.
The tense stuff was in the middle though, when my surgeon wasn't sure if she could get to the stub of rectum I have left, because it had adhered to other body parts, and she had to do the surgery through some of those other body parts, and then separate them, but at least there was length in my colon, and lo and behold the two again did meet! I'm all intact again. I do have an ileostomy so everything can heal, and even that she managed to pull up through the existing open spot in my abdominal wall - one less hole! This was the potentially big ironic moment. I knew that if I woke up and the ostomy bag was still on my left side, that would mean surgery was not successful. My husband knew this too and wanted to get to me as soon as I woke up so I wouldn't be upset if I felt the bag placement before he could talk to me and let me know what happened.
And now, in 8-12 weeks, assuming everything else goes well, I can opt for surgery #4: The Final Takedown.
With all due respect - my surgeon is amazing. And everyone on my surgical team and all the nurses and the phlebotomists and the anesthesiologists and the woman who answers the food ordering line... you are all amazing. I am so grateful to have access to incredible medical care and especially a surgeon who respects my wishes and goes the extra mile.
It also proved true that not being wicked sick going into major surgery really helps a lot. I was up and walking around the morning after, able to sit in my chair for all my meals, and would have walked out of the hospital no problem if the wheelchair transport hadn't been so well-timed with my discharge. Oxycodone is doing its part for sure but I'm quite certain recovery will be a relative breeze this time around.
Onward and upward.
Maybe I could have stayed away; maybe I could have resisted the lure of the OR and anesthesia's siren song. In the end, a chance at having more or less normal anatomy was too enticing, and I decided, on purpose, to go for surgery #3: The Re-Connection.
I wasn't expecting this one to be a blockbuster like #2. The previews totally gave away the story, and the couple of plot twists they managed to sneak in were pretty vanilla. I mean, probably lots of people go all vasovagal on the anesthesia team when they put in the first IV, and lose literally every drop of super-Gatorade that was supposed to enhance recovery after surgery before the surgeon even shows up for work. And do that in front of their 5-year-old son, who had to come with because you had to be there at 5:30am, and oh yeah it's his birthday too! It's okay honey, mommy's fine, really...
There was some comic relief after getting the epidural - which went totally fine - when the senior anesthetist validated its placement by poking me with a tiny yellow plastic toy sword. Good one. It was even funnier a few hours after surgery when they wanted me to stand up and didn't think I should be in so much pain and then did the big bag of ice test and realized the epidural was only working on my left side. Super jokesters, those pain team dudes! Seriously, I only wanted the left side numb.
The tense stuff was in the middle though, when my surgeon wasn't sure if she could get to the stub of rectum I have left, because it had adhered to other body parts, and she had to do the surgery through some of those other body parts, and then separate them, but at least there was length in my colon, and lo and behold the two again did meet! I'm all intact again. I do have an ileostomy so everything can heal, and even that she managed to pull up through the existing open spot in my abdominal wall - one less hole! This was the potentially big ironic moment. I knew that if I woke up and the ostomy bag was still on my left side, that would mean surgery was not successful. My husband knew this too and wanted to get to me as soon as I woke up so I wouldn't be upset if I felt the bag placement before he could talk to me and let me know what happened.
And now, in 8-12 weeks, assuming everything else goes well, I can opt for surgery #4: The Final Takedown.
With all due respect - my surgeon is amazing. And everyone on my surgical team and all the nurses and the phlebotomists and the anesthesiologists and the woman who answers the food ordering line... you are all amazing. I am so grateful to have access to incredible medical care and especially a surgeon who respects my wishes and goes the extra mile.
It also proved true that not being wicked sick going into major surgery really helps a lot. I was up and walking around the morning after, able to sit in my chair for all my meals, and would have walked out of the hospital no problem if the wheelchair transport hadn't been so well-timed with my discharge. Oxycodone is doing its part for sure but I'm quite certain recovery will be a relative breeze this time around.
Onward and upward.
Friday, February 17, 2017
Planning
Yesterday morning I had my pre-op appointments. Last time I had surgery I did not have any pre-op appointments. I don't remember the day before my last surgery. I remember speaking with the anesthesiologist the morning of and signing a piece of paper and that's about it.
I highly recommend the pre-op appointments if you can swing it. In fact, it turns out there are all kinds of benefits to planning major surgery in advance. Right after you book the procedure you get a nice little packet in the mail full of info about the hospital, the gift shop, where you can eat at the hospital and in the area, support services as an in-patient, what you should and shouldn't bring, directions, hotels, all kinds of goodies. During the pre-op orientation you get a detailed timeline of when to eat and when not to eat, when exactly to take the pre-op antibiotics, when exactly to perform the other prep steps (think colonoscopy), and when exactly to drink the gatorade on steroids that is supposed to help you recover faster. You learn how you're supposed to take a shower with the special soap for three days in advance. You are instructed not to use any products with fragrance the morning of, or anything with alcohol, not to have nail polish on your fingers (toes are okay), not to wear any jewelry and to be sure to remove all piercings. You get to see the first ostomy nurse you met at Brigham & Women's after the second surgery who showed you the right products and basically made it possible for you to leave your house and try to live a normal life; you see her because she gets to mark the spot on your abdomen where the ileostomy should go, in the event you have to have one (because maybe, just maybe, if everything looks good, you won't have to have one, says your surgeon). You talk about options for pain management and discover that the one everyone recommends by leaps and bounds - the epidural - is the one that scares you the most because it took three people five tries and over an hour to give you one when you were twelve hours into labor with your son. You find out that you are the first surgery of the day, a VIP, however be sure to call the day before to confirm the time just in case something comes up. (And then you realize, oh right, I was the something that came up for somebody else, way back then.)
Yet there are drawbacks. It turns out that having major abdominal surgery in an emergency situation with no lead time is in some ways preferable to making deliberate arrangements to be gutted like a fish. Until yesterday I had been able to keep this event on the horizon. Now it is looming and giant and speeding towards me and in my face and it won't shut up and all this stress can't possibly be good for me going into it. On top of it all I have this fear that when she opens me up my surgeon will find more cancer, something capable of evading the blood tests and the scans and triggering no symptoms whatsoever, something she will discover on the eve of my almost being eligible for life insurance again, a day I was really looking forward to so my family wouldn't have to struggle if their sole breadwinner succumbed to this disease or some other unfortunate accident.
On the bright side, when this is over, I'll have even more medical expenses to tally up for you, and together we can marvel at the price tag attached to the miracle of modern medicine. In the meantime I will take your thoughts, well wishes, meditations, prayers, and positive vibes. Peace.
I highly recommend the pre-op appointments if you can swing it. In fact, it turns out there are all kinds of benefits to planning major surgery in advance. Right after you book the procedure you get a nice little packet in the mail full of info about the hospital, the gift shop, where you can eat at the hospital and in the area, support services as an in-patient, what you should and shouldn't bring, directions, hotels, all kinds of goodies. During the pre-op orientation you get a detailed timeline of when to eat and when not to eat, when exactly to take the pre-op antibiotics, when exactly to perform the other prep steps (think colonoscopy), and when exactly to drink the gatorade on steroids that is supposed to help you recover faster. You learn how you're supposed to take a shower with the special soap for three days in advance. You are instructed not to use any products with fragrance the morning of, or anything with alcohol, not to have nail polish on your fingers (toes are okay), not to wear any jewelry and to be sure to remove all piercings. You get to see the first ostomy nurse you met at Brigham & Women's after the second surgery who showed you the right products and basically made it possible for you to leave your house and try to live a normal life; you see her because she gets to mark the spot on your abdomen where the ileostomy should go, in the event you have to have one (because maybe, just maybe, if everything looks good, you won't have to have one, says your surgeon). You talk about options for pain management and discover that the one everyone recommends by leaps and bounds - the epidural - is the one that scares you the most because it took three people five tries and over an hour to give you one when you were twelve hours into labor with your son. You find out that you are the first surgery of the day, a VIP, however be sure to call the day before to confirm the time just in case something comes up. (And then you realize, oh right, I was the something that came up for somebody else, way back then.)
Yet there are drawbacks. It turns out that having major abdominal surgery in an emergency situation with no lead time is in some ways preferable to making deliberate arrangements to be gutted like a fish. Until yesterday I had been able to keep this event on the horizon. Now it is looming and giant and speeding towards me and in my face and it won't shut up and all this stress can't possibly be good for me going into it. On top of it all I have this fear that when she opens me up my surgeon will find more cancer, something capable of evading the blood tests and the scans and triggering no symptoms whatsoever, something she will discover on the eve of my almost being eligible for life insurance again, a day I was really looking forward to so my family wouldn't have to struggle if their sole breadwinner succumbed to this disease or some other unfortunate accident.
On the bright side, when this is over, I'll have even more medical expenses to tally up for you, and together we can marvel at the price tag attached to the miracle of modern medicine. In the meantime I will take your thoughts, well wishes, meditations, prayers, and positive vibes. Peace.
Tuesday, February 7, 2017
Bellies
Yesterday Facebook reminded me of this belly shot. This was a little over two weeks before my son was born, nearly five years ago. I am quite sure this is the last picture of my belly I have, from before he was born, before I was gutted like a fish thanks to cancer, before the new normal. If I am very, very lucky, in a little over two weeks from now, my anatomy might be in one piece again. And in another 8-12 weeks from then, I might have an intact belly again. Never again will it look as amazing as it does in this picture; it will be a whole other kind of amazing. Fingers crossed.
Sunday, January 8, 2017
The Cost of Cancer, updated - also fundraising
Cancer is still expensive. At the end are the updated numbers representing 17 months of this ordeal.
Once again I am grateful for my health insurance. I am also grateful to The Sanborn Foundation, which supports Arlington, MA residents diagnosed with cancer regardless of income. We received a grant to cover any of our cancer-related out of pocket expenses. Knowing that there are millions of people without amazing health insurance or a local organization such as the one in my town, we donate to Dana-Farber directly and via the many Jimmy Fund activities we now participate in. Consider supporting my participation or registering to participate yourself:
FitFest (here is my fundraising page) -- Saturday 5/6/17
Boston Marathon Jimmy Fund Walk (here is my fundraising page) -- Sunday 9/24/17
Next year I hope to also do the Pan-Mass Challenge (8/5-8/6). With surgeries this year I felt I wouldn't have time to get into good enough shape for the intense 2-day ride. I do hope to resume my bike commuting to work however.
You can also run for the Jimmy Fund in a whole bunch of events. I haven't done one of these yet as I'm not a runner. Maybe one day I will be.
And with all those ways to support folks financing their health care and those looking for cures, here are the numbers for one person's relatively straight-ahead battle:
Chemotherapy 6,645.22
Chemotherapy-related 126,589.98 (Neulasta)
Clinic/Consultation 1,076.00
Emergency Room 1,949.00
Inpatient 6,687.34
Labs/Scans 35,843.00
Medical Supplies 3,787.38
Surgery 16,516.50
TOTAL 199,094.42
And an updated out-of-pocket breakdown:
Clothing/supplies 184.54
Copays- appts 350.00
Copays- scrips 71.47
Food 357.58
Parking 649.00
TOTAL OOP 1,612.59
Wicked-sobering grand total: 200,707.01
Once again I am grateful for my health insurance. I am also grateful to The Sanborn Foundation, which supports Arlington, MA residents diagnosed with cancer regardless of income. We received a grant to cover any of our cancer-related out of pocket expenses. Knowing that there are millions of people without amazing health insurance or a local organization such as the one in my town, we donate to Dana-Farber directly and via the many Jimmy Fund activities we now participate in. Consider supporting my participation or registering to participate yourself:
FitFest (here is my fundraising page) -- Saturday 5/6/17
Boston Marathon Jimmy Fund Walk (here is my fundraising page) -- Sunday 9/24/17
Next year I hope to also do the Pan-Mass Challenge (8/5-8/6). With surgeries this year I felt I wouldn't have time to get into good enough shape for the intense 2-day ride. I do hope to resume my bike commuting to work however.
You can also run for the Jimmy Fund in a whole bunch of events. I haven't done one of these yet as I'm not a runner. Maybe one day I will be.
And with all those ways to support folks financing their health care and those looking for cures, here are the numbers for one person's relatively straight-ahead battle:
Chemotherapy 6,645.22
Chemotherapy-related 126,589.98 (Neulasta)
Clinic/Consultation 1,076.00
Emergency Room 1,949.00
Inpatient 6,687.34
Labs/Scans 35,843.00
Medical Supplies 3,787.38
Surgery 16,516.50
TOTAL 199,094.42
And an updated out-of-pocket breakdown:
Clothing/supplies 184.54
Copays- appts 350.00
Copays- scrips 71.47
Food 357.58
Parking 649.00
TOTAL OOP 1,612.59
Wicked-sobering grand total: 200,707.01
Saturday, December 31, 2016
Out with the new, in with the old
Today marks 1 year and 5 months since the official confirmation of my cancer diagnosis. I am still cancer-free; the most recent scan on 12/9 was clear. The longer I live without a recurrence the better the chances that it won't come back.
In 2017 I'm (hopefully) getting rid of the new, anatomically speaking, and getting back to my old self. If all goes well I'll be almost all the way there on Friday, February 24th. That is when I'll have the surgery to reconnect. It's also my son's 5th birthday, so, auspicious.
There is no guarantee of success. It could go a few different ways:
1) they open me up and can't see what they need to see, thanks to scarring, adhesions, etc. - they'd close me back up and that's that; or
2) they can see what they need to but there isn't enough length left to reconnect - in this case they'll remove my colon all together and reconnect using my small intestine instead; or
3) they can see what they need to, there's enough length, they reconnect, reversing the existing colostomy in the process, and give me an ileostomy for a few weeks while everything heals. The ileostomy would be reversed 8-12 weeks later.
#3 is ideal. #2 would be different but doable. I wouldn't be happy with #1, but if it happens, I'd accept it in time. Since scheduling the surgery I've become more frustrated with having an ostomy. I think that means attempting the reversal is the right decision. My surgeon gives me a 90% chance of success. I would have done it for 50%.
In 2017 I'm (hopefully) getting rid of the new, anatomically speaking, and getting back to my old self. If all goes well I'll be almost all the way there on Friday, February 24th. That is when I'll have the surgery to reconnect. It's also my son's 5th birthday, so, auspicious.
There is no guarantee of success. It could go a few different ways:
1) they open me up and can't see what they need to see, thanks to scarring, adhesions, etc. - they'd close me back up and that's that; or
2) they can see what they need to but there isn't enough length left to reconnect - in this case they'll remove my colon all together and reconnect using my small intestine instead; or
3) they can see what they need to, there's enough length, they reconnect, reversing the existing colostomy in the process, and give me an ileostomy for a few weeks while everything heals. The ileostomy would be reversed 8-12 weeks later.
#3 is ideal. #2 would be different but doable. I wouldn't be happy with #1, but if it happens, I'd accept it in time. Since scheduling the surgery I've become more frustrated with having an ostomy. I think that means attempting the reversal is the right decision. My surgeon gives me a 90% chance of success. I would have done it for 50%.
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