Back from Florida, and off to the doctor ... we met with my surgeon here in Freeport this morning. The margins were good, so they got all of the cancer out. I have a minor infection at the incision site, but he figured that they won't need to do anything else; he prescribed some antibiotics to help it clear up.
He also talked about a different type of genetic test he thought I should have - the Oncotype DX test. It apparently helps them identify patients who are more likely to have a reoccurrence of cancer. He asked if I had seen anyone at the Cancer Center, and we told him that we had an appointment at the UW later that afternoon.
Later, as we met with the UW oncologist, I mentioned the Oncotype DX test - he said that it wasn't necessary for patients with my type of breast cancer.
I thought of that moment later, as Jeff drove home. We'll be going up there at least every 2 weeks through mid-summer, and I'll be driving up again tomorrow for an echocardiogram. But all the driving is OK - I feel like I'm in good hands up in Madison, where all my doctors know what kind of cancer I have.
We talked again about what will happen with chemotherapy, and set up an appointment to see the doctor and begin chemo next Wednesday. It's pretty fast, but I'd rather not sit around and think about it, anyway. Let's get it started, so we can get it done.
One thing the oncologist said stuck with both me and Jeff today:
He said that if 100 women in my situation (post surgery) with my type of cancer decided to skip chemo, about 35 of them would develop cancer again or elsewhere in their body, and die.
If 100 women in my situation with my type of cancer all had chemo, about 20 of them would develop cancer again or elsewhere and die.
The 20 percent number is kind of scary, frankly. But it's better than 35 percent.
Wednesday, April 27, 2016
Tuesday, April 19, 2016
April 19, 2016
OK, back to the present day! I am sitting on our balcony as I write this; soon we'll head down to our beach chairs to enjoy this gorgeous sunny day. I just have some random thoughts that I want to remember.
At each quarterly M45 staff meeting, names are drawn for STAR awards - it's a way to thank people who have gone out of their way to help. It's a nice tradition, and it always makes me happy to hear the many ways people have helped each other at work. Another tradition is that one name is drawn, and that person can choose a charity to receive a $45 donation from the company. This quarter, Mindy Becker's name was chosen, and she chose to give the donation to the FHN Leonard C. Ferguson Cancer Center in my honor. That was a really beautiful thing to do, and it means a lot to me. =)
In other super-weepy news, as we were headed east on US 20 last Saturday, Jeff told me to look at my Spotify inbox. He had made a playlist - "The Soundtrack of Us (So Far)" for me! It had all the music we talked about the morning of my surgery as an introduction, and then turned into a very big Rogepalooza list. It's 17+ hours long! It made the car ride down here so much fun, remembering the concerts we've been to and the music we've loved. I usually fall asleep in the car, but I didn't this time. =)
Our typical routine when we're here in PCB is to settle in to our beach chairs, open our beers, and read. I love it. But yesterday, we popped open our beers ... and just kept talking. I didn't read a word all day. (I did, however, nap after we'd had all our beers. =) Jeff was able to get some reading done.) I feel like the luckiest person in the world, having a husband to talk to for 17 hours of car ride, then some more the next day. We usually snicker about "hashtag people," but I really am #blessed.
At each quarterly M45 staff meeting, names are drawn for STAR awards - it's a way to thank people who have gone out of their way to help. It's a nice tradition, and it always makes me happy to hear the many ways people have helped each other at work. Another tradition is that one name is drawn, and that person can choose a charity to receive a $45 donation from the company. This quarter, Mindy Becker's name was chosen, and she chose to give the donation to the FHN Leonard C. Ferguson Cancer Center in my honor. That was a really beautiful thing to do, and it means a lot to me. =)
In other super-weepy news, as we were headed east on US 20 last Saturday, Jeff told me to look at my Spotify inbox. He had made a playlist - "The Soundtrack of Us (So Far)" for me! It had all the music we talked about the morning of my surgery as an introduction, and then turned into a very big Rogepalooza list. It's 17+ hours long! It made the car ride down here so much fun, remembering the concerts we've been to and the music we've loved. I usually fall asleep in the car, but I didn't this time. =)
Our typical routine when we're here in PCB is to settle in to our beach chairs, open our beers, and read. I love it. But yesterday, we popped open our beers ... and just kept talking. I didn't read a word all day. (I did, however, nap after we'd had all our beers. =) Jeff was able to get some reading done.) I feel like the luckiest person in the world, having a husband to talk to for 17 hours of car ride, then some more the next day. We usually snicker about "hashtag people," but I really am #blessed.
April 15, 2016
I have tried to be as honest as possible in terms of when I write things here, so I'll confess right up front: I'm writing this on April 19. The date of the post is significant, however, so I'll just carry on.
On Friday the 15th, I had settled in for some TV watching when I got a call from the Madison area code. It was Dr. Greenberg, the surgeon we met with for a second opinion. As part of that process, FHN had sent all my reports and pathology stuff (slides? specimens? bits and pieces?) up to UW for their review.
FHN had ruled that the biopsy of my right breast was non-cancerous. I understand the risks of that - what if they just "missed" the cancer cells? - and was fine with not worrying too much about that right now. I'm headed for chemo, anyway, and chances are that would wipe out any cancer cells that may have been hiding.
But the doctors at UW had a different opinion. They hadn't found cancer, but they had found cells that are typically a precursor to cancer. (I can't remember the exact term - all I remember is "hyperplasia." The "next step" in those cells development could be DCIS, or ductal carcinoma in situ.) Dr. Greenberg felt we should remove that spot, as well. We went over our schedules - me leaving for Florida and she will be out of the office for a few weeks starting the day I get back. I told her that we are really leaning toward moving "home base" of my care up there, and that I would get in touch with the oncologist I met. She assured me that getting rid of the spot on the right breast isn't a super-high priority, and that she can work with the oncologist to schedule a time for more surgery.
Again, I'm super-impressed that an actual doctor called me. (Yeah, I know; I'm easily impressed.) I just really like that, and I feel good about continuing my care up in Madison.
Later that day, I had to take our car in for an oil change (we drove to Panama City Beach). While I'm sitting there, my primary care doctor walks in! He knows me, and asks how I'm doing. He's a really nice guy; Drew actually roomed with his son (and still shares an apartment with him) in college. It was nice to see him, and reassuring that he knew who I am and what is happening.
Monday, April 11, 2016
April 11, 2016
Oh, my gosh, I'm so miserable. In typical me fashion, I caught a cold after my surgery, and apparently, my body has switched its focus from cancer to snot production, 24/7. And I'm a freaking overachiever.
Apart from the crappy cold, I'm feeling pretty OK - still tired, and doing pretty much anything makes me break out in a cold sweat and want to lie down for a few hours, but I'm not having much pain at all.
I have two incision spots; one for the lumpectomy, which is closed with glue (?!), and one for the lymph node biopsy, which is closed with stitches. The glued spot is purple and pretty much painless. The stitches had a bandage over them which I removed on Saturday. I've replaced it with another big bandage to keep the irritation level as low as possible. Not much to see, and like I said, right now my biggest complaint is nonstop mucus production. Tough life.
We have an appointment with the surgeon on Wednesday (April 13) for a post-surgical check and to find out the results of the tests on the lymph nodes they removed.
They removed 5 nodes, and after the imaging done in Madison, I'm not too concerned that the cancer has spread. I could be surprised, of course, but since I'm prepared for chemotherapy and radiation anyway, I guess hearing that a few cells had gone rogue wouldn't be all that devastating.
With triple negative cancer, as the UW surgeon said, you pretty much just assume that some cancer cells are out there, and go after them with everything you've got. It's kind of comforting, in a weird way; I like the idea of nuking everything, just in case. (I bet I'll like it a lot less while I'm in the nuking process, but for now, it all gets to be some far-off scenario.)
I think we are going to make UW-Madison our "base" for care from here on out. I am hoping to be able to have some of the chemotherapy out of the FHN Cancer Center here in Freeport, but I have really liked the atmosphere up there. They are very "big picture," and I like that.
My surgeon, being a surgeon, has been really focused on his part of this process; cutting out the tumor. All indications are he did an awesome job! But my part of this isn't over. It's hardly started, and I'm trying to keep that in mind so I don't get all cocky.
It isn't the surgeon's job to remember what kind of cancer I have, so when the nurses and techs in the pre-OR room couldn't get an IV started and I joked that I see a chemo port in my very near future, he didn't have to get that (lame excuse for a) joke.
He mentioned it after the surgery, even - like, "was I supposed to be putting in a port?" We had talked about it in his office - he preferred not to do the lumpectomy and port placement in the same surgery, (no sense even taking the tiniest chance of spreading cancer cells around) and that was fine with me. I just know that it's coming.
My point - and I do have one - is that I'm a big enough baby that I want people (more specifically, medical professionals) around me who know where I'm at in this "journey" (ugh) and where I'm headed. I want to know as much as anyone else in the room (I am still me ...), but I don't want to have to drive. I just want to be a super-well-informed passenger. Who gets to have an opinion (OK, the last word) on everything that happens.
Apart from the crappy cold, I'm feeling pretty OK - still tired, and doing pretty much anything makes me break out in a cold sweat and want to lie down for a few hours, but I'm not having much pain at all.
I have two incision spots; one for the lumpectomy, which is closed with glue (?!), and one for the lymph node biopsy, which is closed with stitches. The glued spot is purple and pretty much painless. The stitches had a bandage over them which I removed on Saturday. I've replaced it with another big bandage to keep the irritation level as low as possible. Not much to see, and like I said, right now my biggest complaint is nonstop mucus production. Tough life.
We have an appointment with the surgeon on Wednesday (April 13) for a post-surgical check and to find out the results of the tests on the lymph nodes they removed.
They removed 5 nodes, and after the imaging done in Madison, I'm not too concerned that the cancer has spread. I could be surprised, of course, but since I'm prepared for chemotherapy and radiation anyway, I guess hearing that a few cells had gone rogue wouldn't be all that devastating.
With triple negative cancer, as the UW surgeon said, you pretty much just assume that some cancer cells are out there, and go after them with everything you've got. It's kind of comforting, in a weird way; I like the idea of nuking everything, just in case. (I bet I'll like it a lot less while I'm in the nuking process, but for now, it all gets to be some far-off scenario.)
I think we are going to make UW-Madison our "base" for care from here on out. I am hoping to be able to have some of the chemotherapy out of the FHN Cancer Center here in Freeport, but I have really liked the atmosphere up there. They are very "big picture," and I like that.
My surgeon, being a surgeon, has been really focused on his part of this process; cutting out the tumor. All indications are he did an awesome job! But my part of this isn't over. It's hardly started, and I'm trying to keep that in mind so I don't get all cocky.
It isn't the surgeon's job to remember what kind of cancer I have, so when the nurses and techs in the pre-OR room couldn't get an IV started and I joked that I see a chemo port in my very near future, he didn't have to get that (lame excuse for a) joke.
He mentioned it after the surgery, even - like, "was I supposed to be putting in a port?" We had talked about it in his office - he preferred not to do the lumpectomy and port placement in the same surgery, (no sense even taking the tiniest chance of spreading cancer cells around) and that was fine with me. I just know that it's coming.
My point - and I do have one - is that I'm a big enough baby that I want people (more specifically, medical professionals) around me who know where I'm at in this "journey" (ugh) and where I'm headed. I want to know as much as anyone else in the room (I am still me ...), but I don't want to have to drive. I just want to be a super-well-informed passenger. Who gets to have an opinion (OK, the last word) on everything that happens.
Wednesday, April 6, 2016
April 6, 2016
It's probably kind of ... odd to call the day you have cancer surgery a good day. But hey, I'm embracing the oddness.
We reported to the hospital at 9 a.m. sharp, and soon I was in a green hospital gown, waiting to be taken to radiology for a lymphoscintigraphy. I knew it wasn't going to be good - the nurse didn't talk about what it was, just kind of said "you'll go down for your lympho, and then up to surgery!" like she didn't want to talk about it.
The nuclear medicine person filled me in. Four shots of radioactive material just barely into/under the skin of the nipple. "We've tried different ways to numb the area," she says, "but they all just ended up hurting more." So, it turns out the worst part of the day was to be the first part of the day. Yikes.
Actually, it wasn't all that bad. It hurt, but it wasn't a prolonged shot - that's what I expected, because that's what it's like when they numb you up for a biopsy. This was a quick, intense pain, but then it lessened pretty fast. Maybe the radiologist talked it up so much to make me feel brave for getting through it. (It worked.)
After the shots, I spent about an hour in a big machine to provide a "map" of my lymphatic system, so the surgeon would know which lymph node to remove and examine to determine if the cancer has spread.
And after that, more barbaric fun - the radiologist used a needle to thread a wire into my tumor, giving the surgeon a well-lit path for the surgery. Uncomfortable, but not all that bad.
Then, finally, I was wheeled into the pre-op room. I talked to the anesthesiologist and my surgeon while an unlucky nurse tried multiple times to start an IV. It turns out the veins on my right side aren't easy to stick.=( Eventually, the nurse anesthetist gave it a couple tries and finally succeeded. Everyone apologized (over and over) about all the tries, but it wasn't that bad, either. (Plus, I knew the good drugs were on their way ...)
The last thing I remember is the nurse anesthetist giving me something that would relax me. Then I woke up in my hospital room, and Jeff came in - with Jen, and Tom! Tom had borrowed a car from a friend at Cornell and drove in to surprise me. It worked, and seeing both Tom and Jen made me almost unreasonably happy. =)
Jeff's parents came in a few minutes later, and we all had a nice visit. Jeff filled all of us in on the surgery - either 4 or 5 lymph nodes were removed, along with what the surgeon is pretty sure is all of the cancerous tumor. Final testing will take a few days.
I'm kind of sore - watching the clock, in fact, for my next dose of Norco - but we have finally started getting rid of this cancer crap, and I'm happy.
That's right - happy. (Take that, cancer.) I have an incredible family I love to pieces, and a good life. And I've started to kick cancer's ass.
We reported to the hospital at 9 a.m. sharp, and soon I was in a green hospital gown, waiting to be taken to radiology for a lymphoscintigraphy. I knew it wasn't going to be good - the nurse didn't talk about what it was, just kind of said "you'll go down for your lympho, and then up to surgery!" like she didn't want to talk about it.
The nuclear medicine person filled me in. Four shots of radioactive material just barely into/under the skin of the nipple. "We've tried different ways to numb the area," she says, "but they all just ended up hurting more." So, it turns out the worst part of the day was to be the first part of the day. Yikes.
Actually, it wasn't all that bad. It hurt, but it wasn't a prolonged shot - that's what I expected, because that's what it's like when they numb you up for a biopsy. This was a quick, intense pain, but then it lessened pretty fast. Maybe the radiologist talked it up so much to make me feel brave for getting through it. (It worked.)
After the shots, I spent about an hour in a big machine to provide a "map" of my lymphatic system, so the surgeon would know which lymph node to remove and examine to determine if the cancer has spread.
And after that, more barbaric fun - the radiologist used a needle to thread a wire into my tumor, giving the surgeon a well-lit path for the surgery. Uncomfortable, but not all that bad.
Then, finally, I was wheeled into the pre-op room. I talked to the anesthesiologist and my surgeon while an unlucky nurse tried multiple times to start an IV. It turns out the veins on my right side aren't easy to stick.=( Eventually, the nurse anesthetist gave it a couple tries and finally succeeded. Everyone apologized (over and over) about all the tries, but it wasn't that bad, either. (Plus, I knew the good drugs were on their way ...)
The last thing I remember is the nurse anesthetist giving me something that would relax me. Then I woke up in my hospital room, and Jeff came in - with Jen, and Tom! Tom had borrowed a car from a friend at Cornell and drove in to surprise me. It worked, and seeing both Tom and Jen made me almost unreasonably happy. =)
Jeff's parents came in a few minutes later, and we all had a nice visit. Jeff filled all of us in on the surgery - either 4 or 5 lymph nodes were removed, along with what the surgeon is pretty sure is all of the cancerous tumor. Final testing will take a few days.
I'm kind of sore - watching the clock, in fact, for my next dose of Norco - but we have finally started getting rid of this cancer crap, and I'm happy.
That's right - happy. (Take that, cancer.) I have an incredible family I love to pieces, and a good life. And I've started to kick cancer's ass.
Tuesday, April 5, 2016
April 5, 2016
So, today has been weird. Jeff and I went to the UW-Madison Cancer Center yesterday for a second opinion, and talked to a really great team of people. I'm having surgery tomorrow, so today is my last day at work for a while, and I've spent most of the afternoon typing up instructions. And I cleaned my desk up a little bit. It was pretty bad.
Today is also our 13th anniversary. That's pretty cool. =)
So, yesterday: The surgeon advocated for chemotherapy before surgery. The oncologist (who reminded both me and Jeff of House's oncologist friend on the TV show {and me of Neal from Dead Poets Society, in what I'm going to take as a nod to you, Christy, up in heaven}) was more of an "it's your choice" guy - both ways (surgery first, then chemo and chemo first, then surgery) have the same success rate, so it's basically a personal choice.
Well, seeing as I had surgery scheduled for 2 days later, we chose to do surgery (at FHN) first, then chemo, perhaps up at UW-Madison.
I'm going to be really vain and selfish here, but
A) I'm not ready to lose my hair yet
B) I want things to start happening NOW, and
C) my three-week convalescence will wrap up with a trip to Panama City Beach and New Orleans (where we're seeing Duran Duran as part of my Christmas gift)
So, surgery it is.
I'm glad we went up to Madison, though. Everyone we met with was extremely nice and made it clear that we can choose to do any part of the treatment up in Madison, or in conjunction with Madison. The surgeon ordered an ultrasound of my lymph nodes on the left side (which looked clean, whew) and the oncologist ordered some blood work. I was extremely surprised when the oncologist called me back himself to let me know the blood work all looked good, too. Like, an actual person with an MD called me - I can't usually even get that to happen when I need to talk to a doctor for his own promotion at work!
Today is also our 13th anniversary. That's pretty cool. =)
So, yesterday: The surgeon advocated for chemotherapy before surgery. The oncologist (who reminded both me and Jeff of House's oncologist friend on the TV show {and me of Neal from Dead Poets Society, in what I'm going to take as a nod to you, Christy, up in heaven}) was more of an "it's your choice" guy - both ways (surgery first, then chemo and chemo first, then surgery) have the same success rate, so it's basically a personal choice.
Well, seeing as I had surgery scheduled for 2 days later, we chose to do surgery (at FHN) first, then chemo, perhaps up at UW-Madison.
I'm going to be really vain and selfish here, but
A) I'm not ready to lose my hair yet
B) I want things to start happening NOW, and
C) my three-week convalescence will wrap up with a trip to Panama City Beach and New Orleans (where we're seeing Duran Duran as part of my Christmas gift)
So, surgery it is.
I'm glad we went up to Madison, though. Everyone we met with was extremely nice and made it clear that we can choose to do any part of the treatment up in Madison, or in conjunction with Madison. The surgeon ordered an ultrasound of my lymph nodes on the left side (which looked clean, whew) and the oncologist ordered some blood work. I was extremely surprised when the oncologist called me back himself to let me know the blood work all looked good, too. Like, an actual person with an MD called me - I can't usually even get that to happen when I need to talk to a doctor for his own promotion at work!
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