Two of my sisters are teachers in North Carolina, and they had the same
spring break as me. They drove up Wednesday, after a couple of days of
uncertainty due to Kathleen's eight month old's teething, which had caused
some congestion and vomiting. Until we were certain it was teething and not
something contagious, we weren't sure if they'd be able to come.
Fortunately, it was just his teeth, and he was far less miserable once
he had a little Tylenol and Orajel.
I had my OB checkup and my
oncology appointment Wednesday afternoon, so I spent the morning getting
the house put together. Kevin left work early and came home to help
finish up before the appointments. The OB appointment was fine; he isn't
concerned that I haven't gained any weight, since my appetite is
definitely strong and I'm eating plenty. I'll be induced at 39 weeks,
since he's concerned about the baby's size due to my gestational diabetes
(which continues to be well controlled, even with the stress and the
steroids). As long as the baby isn't too big, I'll be induced rather
than scheduled for a C-section, which would definitely be better in
light of everything else going on.
At my next appointment, on the
13th, I'll get the RhoGAM shot since Kevin's blood type isn't compatible
with mine and it's possible the baby's won't be either. I had the shot about a
year ago, after we learned I was going to miscarry, and while it hurt a
bit, it wasn't bad.
Much more exciting than a shot, we'll have
another sonogram at that appointment. This one is to measure the baby's
growth, but they'll also be looking closely at the baby's cleft to try
to get a better idea of the severity of it. We won't be able to rule out
a cleft palate until the baby is born, though they could rule it in if
they are able to get the right view. We're praying for cleft lip only,
as that will require far less intervention than a cleft lip and palate.
Either way, baby and I will likely be having our surgeries within a few
weeks of each other. We will know much more about the cleft after we
meet with the cleft team; I'm planning to call this week to get that
scheduled.
We'd gotten to the first appointment early, and we were
finished within five minutes of when my appointment was scheduled to start.
That gave us enough time to walk over to the lab to have my oncology
blood work done before my next appointment. It went fast, and the
phlebotomist was able to find my vein on the first try--it usually takes
several attempts for them, even though they always tell me I have good
veins. I still got a lovely bruise from it though.
The oncology
appointment was scheduled with the PA, as my oncologist is on vacation
this week. I liked her, and she answered my list of questions and
reassured me about all of the symptoms I've experienced since the
infusion. She thought my port was looking good and said the strange
sensations, stinging, and pain that I get every once in a while is
likely because of a nerve in the area. Hopefully it'll heal completely
soon. It seems to be improving daily. She didn't see any issue with me
having the RhoGAM two days before my next infusion, and she encouraged
me to take a stool softener, since that has been one of the biggest
issues I've had (pregnancy definitely doesn't help either). She said to
call if I develop any mouth sores in the future; they'll call me in a
prescription for Magic Mouthwash, which I've heard and read about from
others who've gone through chemo. She said if they don't write it to
have a steroid, insurance companies are far less grouchy about it.
We
got home and had a couple hours until my sisters and the kids arrived,
so we got dinner started (thanks to friends who brought us a huge
lasagna) and took it easy for a bit. They got in just before 7, and we
ate, played around, put the kids to bed, and then hung out in the
basement (it's nice to not have to worry about keeping quiet, since
we're far enough away from the bedrooms) and everyone but me enjoyed
adult beverages. We decided to go to the aquarium in the morning, and
Kevin and I decided it was worth it to get a membership for us--it will
pay for itself the next time we go, and we both really enjoy going. We
stayed up too late, especially Kevin, who still had to work the next
day.
Thursday, March 31, 2016
Thursday, March 24, 2016
And it continues...
Me: Your family's going to be mad at us for being late for dinner.
Kevin: They can't be mad at me. My wife has cancer!
Kevin: They can't be mad at me. My wife has cancer!
Wednesday, March 23, 2016
So it begins...
Me: I'm going upstairs for my medicine and snack. Need anything?
Kevin: You can take out the trash for me.
Me, in an impressively whiny voice: But I have cancer!
Kevin: ...
We're working hard to keep a sense of humor about all of this. So far it's working.
Kevin: You can take out the trash for me.
Me, in an impressively whiny voice: But I have cancer!
Kevin: ...
We're working hard to keep a sense of humor about all of this. So far it's working.
Saturday, March 19, 2016
A Weekend with Mom. Or: Hair Today, Gone Tomorrow
My mom drove up last night to spend the weekend with me. It’s really
nice to have her here. I woke up at 4:40 this morning with a sore
shoulder from sleeping funny; it happens often now that I’m supposed to
be sleeping on my side, and I’ve been a back or stomach sleeper my
entire life. I never did get back to sleep, so I took a nice nap on the
couch this afternoon with Kevin, the dog, and one of the kitties.
I had an appointment with a wig shop this morning at 10. Mom and Kevin and I met my mother-in-law and sister-in-law at the shop, where the woman had me try on several spectacularly wrong-for-me wigs before she found one that was long enough to pull back and looked much more like the wash-and-go hairstyle that I already have. This wig had a bit of wave to it, but it wasn’t curly and it had highlights, so it still looked a bit different. She said she saw one in a catalogue earlier this week that she thinks will be exactly right for me; it’s a similar style to the wig I still had on my head, but it was curly. She said they should be able to match my color, curl shape, and texture quite closely, and they’ll have it in next weekend. That will be just in time for me to shave my head to prepare for it falling out on its own. My oncologist had said, “We urge people to take control of losing their hair, so it doesn’t control them”. Seems reasonable.
So here’s what I’ve been thinking. I’m going to lose my hair anyway, so maybe I can raise some money for cancer research before that happens. St. Baldrick’s Foundation raises money for childhood cancer research, and I can’t think of a better cause to raise money for (unless you want to donate to Bernie Sanders’ campaign. I already knew we needed better healthcare in this county; my medical bills this year will bring it far closer to home that I would like. And we’re far better off than millions of people in this country).
So this weekend, before Saturday morning, in fact, I’m going to buzz my head. It’s just long enough, I hope, that if I can buzz it off in one ponytail, it’ll be long enough to donate for use in a wig for someone else. It’s a win-win.
So will you donate? Lots of people have asked what they can do for us; this is something that would mean a lot to me.
Also, help us rent that damn rowhouse.
Also on Saturday, delicious dinner at Bill Bateman’s Bistro, and I won best dish, even though I could hardly put a dent in my shrimp and sausage mac & cheese after enjoying my share of the crab pretzel appetizer. That just means more leftovers. I really wanted to have some of my mother’s toasted almond cocktail. Maybe I’d have taken a sip if I hadn’t already had so many nasty chemicals pumped into my body in the last 36 hours.
What I put on Facebook:
Thank you everyone for the kind words, well wishes, offers of assistance, and prayers. It’s still somewhat surreal at times, but we’re taking it one day at a time and getting through it all. Chemo definitely wasn’t as bad as I thought it would be; in fact, I’ve been feeling quite good. I do realize that isn’t likely to last, so I’ll enjoy it while I can.
Many people have asked what we need and how they can help. I have a suggestion. Since I’m going to lose my hair from the chemo within the next 12 days, I have decided to take some control over it and go ahead and shave it off on Friday. But I figured out a way to make it more tolerable.
I am partnering with the St. Baldrick’s Foundation, an organization that raises money for childhood cancer research by hosting head shaving events. People pledge money to St. Baldrick’s, I shave my head (and hopefully have enough length to donate my hair for a wig), and then maybe losing my hair won’t be quite as crappy. Good plan, huh?
https://www.stbaldricks.org/participants/mypage/859023/2016
I had an appointment with a wig shop this morning at 10. Mom and Kevin and I met my mother-in-law and sister-in-law at the shop, where the woman had me try on several spectacularly wrong-for-me wigs before she found one that was long enough to pull back and looked much more like the wash-and-go hairstyle that I already have. This wig had a bit of wave to it, but it wasn’t curly and it had highlights, so it still looked a bit different. She said she saw one in a catalogue earlier this week that she thinks will be exactly right for me; it’s a similar style to the wig I still had on my head, but it was curly. She said they should be able to match my color, curl shape, and texture quite closely, and they’ll have it in next weekend. That will be just in time for me to shave my head to prepare for it falling out on its own. My oncologist had said, “We urge people to take control of losing their hair, so it doesn’t control them”. Seems reasonable.
So here’s what I’ve been thinking. I’m going to lose my hair anyway, so maybe I can raise some money for cancer research before that happens. St. Baldrick’s Foundation raises money for childhood cancer research, and I can’t think of a better cause to raise money for (unless you want to donate to Bernie Sanders’ campaign. I already knew we needed better healthcare in this county; my medical bills this year will bring it far closer to home that I would like. And we’re far better off than millions of people in this country).
So this weekend, before Saturday morning, in fact, I’m going to buzz my head. It’s just long enough, I hope, that if I can buzz it off in one ponytail, it’ll be long enough to donate for use in a wig for someone else. It’s a win-win.
So will you donate? Lots of people have asked what they can do for us; this is something that would mean a lot to me.
Also, help us rent that damn rowhouse.
Also on Saturday, delicious dinner at Bill Bateman’s Bistro, and I won best dish, even though I could hardly put a dent in my shrimp and sausage mac & cheese after enjoying my share of the crab pretzel appetizer. That just means more leftovers. I really wanted to have some of my mother’s toasted almond cocktail. Maybe I’d have taken a sip if I hadn’t already had so many nasty chemicals pumped into my body in the last 36 hours.
What I put on Facebook:
Thank you everyone for the kind words, well wishes, offers of assistance, and prayers. It’s still somewhat surreal at times, but we’re taking it one day at a time and getting through it all. Chemo definitely wasn’t as bad as I thought it would be; in fact, I’ve been feeling quite good. I do realize that isn’t likely to last, so I’ll enjoy it while I can.
Many people have asked what we need and how they can help. I have a suggestion. Since I’m going to lose my hair from the chemo within the next 12 days, I have decided to take some control over it and go ahead and shave it off on Friday. But I figured out a way to make it more tolerable.
I am partnering with the St. Baldrick’s Foundation, an organization that raises money for childhood cancer research by hosting head shaving events. People pledge money to St. Baldrick’s, I shave my head (and hopefully have enough length to donate my hair for a wig), and then maybe losing my hair won’t be quite as crappy. Good plan, huh?
https://www.stbaldricks.org/participants/mypage/859023/2016
Friday, March 18, 2016
Chemo Day One, part two
Kevin took the day off to come with me for my first chemo. As directed, I
put my Emla cream on over the port and covered it with a piece of cling
wrap and some tape. It's lidocaine and prilocaine, which numb the skin
so I won't feel anything when they access my port. We left enough time
to stop for breakfast at Panera (have you had their breakfast soufflés?
They're delicious.) before heading to the hospital. We got checked in
and waited a few minutes before we were called back. We were early
enough to have our pick of seats, and the nurse said the corner spots
were popular for the privacy they afforded. I decided I'd like that,
particularly since it was my first time. The nurse, Lisa, was excellent.
She chatted with us as she set things up, answered my zillion
questions, and helped us feel more at ease.
The Emla worked, and I didn't feel a thing, barely even any pressure, when Lisa started my IV. Everything worked as it was supposed to, and she had me hooked up pretty quickly. The first step is to receive the premeds, which help to reduce side effects, particularly nausea. A steroid was administered via IV, and I also took some oral Zofran, which I was surprised to find were chewable and pretty tasty. Lisa said most people prefer to swallow it, as they quickly come to associate the taste with the unpleasantness of chemo. We had a fair bit of time to kill while the premeds went to work, so Kevin and I chatted and then read the weekly updates for the baby from a few sites we like. The first came from My Pregnancy, and elicited a few choice words from me as the irony of the situation sunk in (italics mine):
"How your life's changing", I read. "Your baby's not the only one with more hair--your locks may look more full and lustrous than ever. --Oh eff you! -- It's not that you're growing more hair, but thanks to hormonal changes, the hair that you'd normally shed is sticking around longer than usual.--Not for long!-- Enjoy the fullness while you can--the extra hair will fall out after you give birth.--Or in about 13 days. Probably 13 days."
I could hardly finish reading the blurb; I was laughing so hard that I had tears in my eyes. Seriously? This is what they tell us about today?
Once we finished reading the weekly updates, we had about 30 more minutes until I'd start getting the actual meds. I asked Kevin to run over to my asthma doctor's office (also at GBMC, though a few buildings away) to pick up a prescription for me, as my inhaler was just about empty and my awesome doctor often gives me samples to spare me the ridiculously high $50 copay.
I kid you not, he hadn't been gone ten minutes before the fire alarm went off. The nurses were surprised--they're usually notified in advance of fire drills, and they hadn't been notified. Everyone in my infusion room put on shoes, unplugged IV stands, and started towards the exit, which was down a long hallway winding past the other infusion room, waiting rooms for the doctors, and the main lobby.
Just before I got to the door, an employee made an announcement that they'd confirmed it was a drill and that we could return to whatever we'd been doing.
Entertainment portion of the morning over, Kevin returned and my infusion started shortly after. The first medication, Adriamycin, looked like red Kool-Aid in large syringes. Apparently, this drug can wreak some impressive havoc if it gets out of the vein, so it's pushed slowly by the nurse rather than left to drip. Lisa told me to keep my mouth as cold as possible throughout, sucking on ice chips or drinking ice water in order to reduce the likelihood or severity of mouth sores (spoiler: I still got them, but maybe they weren't as bad as they could have been).
Once that one was finished, she started the Cytoxan. I worked on getting caught up on some paperwork and did a little journaling; Kevin and I both read some. The oncology social worker came to talk to us and see if we needed anything; she said we could get a free three-month YMCA family membership, so I was excited for that. I dropped my membership to save money about eight months ago, but the water activities in particular are really good for my hip, and I have been missing it. So I'll get that set up pretty soon. Thanks, anonymous donors!
We got my prescription for Neulasta arranged; I had to call the specialty pharmacy to clarify information and provide shipping details, as it'll be delivered to our house tomorrow morning, in time for me to self administer. Holy smokes, I've got to pay a lot of money for things that will make me feel awful. It'll keep me healthy though, so I'll do it.
We finished right around 1:30. I was feeling pretty good, so on the way home we stopped at the grocery store for ingredients for several freezer meals. Kevin's family came to our house for our Friday night pizza, and then Kevin and I got the guestroom set up for my mom, who got in a little after eight.
The Emla worked, and I didn't feel a thing, barely even any pressure, when Lisa started my IV. Everything worked as it was supposed to, and she had me hooked up pretty quickly. The first step is to receive the premeds, which help to reduce side effects, particularly nausea. A steroid was administered via IV, and I also took some oral Zofran, which I was surprised to find were chewable and pretty tasty. Lisa said most people prefer to swallow it, as they quickly come to associate the taste with the unpleasantness of chemo. We had a fair bit of time to kill while the premeds went to work, so Kevin and I chatted and then read the weekly updates for the baby from a few sites we like. The first came from My Pregnancy, and elicited a few choice words from me as the irony of the situation sunk in (italics mine):
"How your life's changing", I read. "Your baby's not the only one with more hair--your locks may look more full and lustrous than ever. --Oh eff you! -- It's not that you're growing more hair, but thanks to hormonal changes, the hair that you'd normally shed is sticking around longer than usual.--Not for long!-- Enjoy the fullness while you can--the extra hair will fall out after you give birth.--Or in about 13 days. Probably 13 days."
I could hardly finish reading the blurb; I was laughing so hard that I had tears in my eyes. Seriously? This is what they tell us about today?
Once we finished reading the weekly updates, we had about 30 more minutes until I'd start getting the actual meds. I asked Kevin to run over to my asthma doctor's office (also at GBMC, though a few buildings away) to pick up a prescription for me, as my inhaler was just about empty and my awesome doctor often gives me samples to spare me the ridiculously high $50 copay.
I kid you not, he hadn't been gone ten minutes before the fire alarm went off. The nurses were surprised--they're usually notified in advance of fire drills, and they hadn't been notified. Everyone in my infusion room put on shoes, unplugged IV stands, and started towards the exit, which was down a long hallway winding past the other infusion room, waiting rooms for the doctors, and the main lobby.
Just before I got to the door, an employee made an announcement that they'd confirmed it was a drill and that we could return to whatever we'd been doing.
Entertainment portion of the morning over, Kevin returned and my infusion started shortly after. The first medication, Adriamycin, looked like red Kool-Aid in large syringes. Apparently, this drug can wreak some impressive havoc if it gets out of the vein, so it's pushed slowly by the nurse rather than left to drip. Lisa told me to keep my mouth as cold as possible throughout, sucking on ice chips or drinking ice water in order to reduce the likelihood or severity of mouth sores (spoiler: I still got them, but maybe they weren't as bad as they could have been).
Once that one was finished, she started the Cytoxan. I worked on getting caught up on some paperwork and did a little journaling; Kevin and I both read some. The oncology social worker came to talk to us and see if we needed anything; she said we could get a free three-month YMCA family membership, so I was excited for that. I dropped my membership to save money about eight months ago, but the water activities in particular are really good for my hip, and I have been missing it. So I'll get that set up pretty soon. Thanks, anonymous donors!
We got my prescription for Neulasta arranged; I had to call the specialty pharmacy to clarify information and provide shipping details, as it'll be delivered to our house tomorrow morning, in time for me to self administer. Holy smokes, I've got to pay a lot of money for things that will make me feel awful. It'll keep me healthy though, so I'll do it.
We finished right around 1:30. I was feeling pretty good, so on the way home we stopped at the grocery store for ingredients for several freezer meals. Kevin's family came to our house for our Friday night pizza, and then Kevin and I got the guestroom set up for my mom, who got in a little after eight.
Chemo Day One, part one
It’s two weeks later, and I’m sitting in the infusion center at GBMC.
I’m just about finished with the Cytoxan, the second drug of the
day, and then we’ll be free to go. Day One of Chemotherapy done.
The Adriamycin already turned my pee pinkish-red. The Cytoxan made my sinuses burn, but the nurse tells me that it’ll stop shortly after the infusion ends. I discovered that LifeSavers help distract from the sensation. Also, LifeSavers are delicious. I got them off the snack tray that a volunteer brought around earlier this morning, along with some delicious Lorna Doone short bread cookies. Kevin helped himself to the slushie machine—Orange Cream! I had a couple of sips and now that I’m thinking about it, I just might stop on the way out for one of my own. What diabetes? My sugar was just fine this morning.
Lisa was my nurse, and she was excellent. Michele, the Oncology Support social worker, stopped by to see how I was doing and if I needed anything. She is going to look into the discounted membership for the YMCA for cancer patients. I’m looking forward to it—I dropped my membership about eight months ago because it was so expensive and I wasn’t using it as much anymore, but I miss the water aerobics classes, especially now during pregnancy and as my hip starts to get more aggravated. So while I’m feeling a bit squicky about asking for the special programs, I know that our finances certainly can’t support a gym membership fee right now, and I’ll suck it up and take advantage of the programs that are out there.
Speaking of finances, anybody want to buy or rent our rowhouse? It’s in a great area, it’s cute and cozy (that’s realtor code for small), and we really really really really really need someone to move in so we don’t have to carry two mortgages anymore.
Also finances? Holy crap our insurance coverage for cancer sucks. I have a $100 copay plus 30% of the cost of the drugs and agents used. Per infusion visit. Before I’m done with this, I’ll have 16 infusion visits. Plus surgery, plus radiation. Radiation is at the same rate. Wait. That can’t be right. I have to go five days a week for 6.5 or so weeks. Please God don’t let that be right.
The Adriamycin already turned my pee pinkish-red. The Cytoxan made my sinuses burn, but the nurse tells me that it’ll stop shortly after the infusion ends. I discovered that LifeSavers help distract from the sensation. Also, LifeSavers are delicious. I got them off the snack tray that a volunteer brought around earlier this morning, along with some delicious Lorna Doone short bread cookies. Kevin helped himself to the slushie machine—Orange Cream! I had a couple of sips and now that I’m thinking about it, I just might stop on the way out for one of my own. What diabetes? My sugar was just fine this morning.
Lisa was my nurse, and she was excellent. Michele, the Oncology Support social worker, stopped by to see how I was doing and if I needed anything. She is going to look into the discounted membership for the YMCA for cancer patients. I’m looking forward to it—I dropped my membership about eight months ago because it was so expensive and I wasn’t using it as much anymore, but I miss the water aerobics classes, especially now during pregnancy and as my hip starts to get more aggravated. So while I’m feeling a bit squicky about asking for the special programs, I know that our finances certainly can’t support a gym membership fee right now, and I’ll suck it up and take advantage of the programs that are out there.
Speaking of finances, anybody want to buy or rent our rowhouse? It’s in a great area, it’s cute and cozy (that’s realtor code for small), and we really really really really really need someone to move in so we don’t have to carry two mortgages anymore.
Also finances? Holy crap our insurance coverage for cancer sucks. I have a $100 copay plus 30% of the cost of the drugs and agents used. Per infusion visit. Before I’m done with this, I’ll have 16 infusion visits. Plus surgery, plus radiation. Radiation is at the same rate. Wait. That can’t be right. I have to go five days a week for 6.5 or so weeks. Please God don’t let that be right.
Wednesday, March 16, 2016
Second Opinions
Even though I was completely comfortable and confident in my doctors at Greater Baltimore Medical Center (GBMC, my local hospital), I decided it was prudent to have a second opinion. With the help of my brother-in-law's family subscription to something called HealthNetwork, I got an appointment with doctors at Johns Hopkins for the Wednesday before my first chemo. I was scheduled in their multidisciplinary clinic, where I would see the surgeon, the oncologist, and the radiology oncologist all during the same session.
Since Kevin was going to take off Friday to come to chemo with me, he went on to work and Kevin's mom came with me to the appointments. We got there about half an hour before the first appointment, scheduled at 9, because traffic wasn't nearly as bad as we'd expected. They had me in a room about 20 minutes before 9, where I went over my medical history with a nurse, who put it into the computer even though I'd already filled out and given them the pre-appointment paperwork with all of this information. She then had me change into a gown to wait for the doctors.
The gown is my biggest complaint from my visit to Hopkins. Unlike GBMC, where the gowns were cut in a wrap-front style that provides full coverage despite opening in the front, the Hopkins gowns left me feeling extremely exposed--and would have even without my pregnant belly pushing the bottom open. There was no overlap at all, and the three string ties did very little to keep me covered. It wasn't until just before seeing the last doctor that I realized I could put my sweater on over and zip it up to help me feel more comfortable--and I didn't figure that out until I needed to find the bathroom, which was down a long hallway, through a busy lobby, and halfway down another--and I was not going to do that with my top half on display. Seriously, folks. For as much money as you bring in, you can invest in some wrap-front gowns for your breast center. We're going through enough already.
Rant over. Though the appointments with each doctor had been set for 60 to 90 minutes apart throughout the morning, we saw the second doctor we were scheduled to see first, and still a few minutes before 9. Someone later explained that he was available then and the doctor we were scheduled to see first was running a bit behind, so they adjusted the schedule so I wouldn't have to wait any longer. I really appreciated that.
The surgeon, Dr. Habibi, came in with a couple of PAs or interns, I don't remember which. I explained I was being seen at GBMC but wanted a second opinion, and he asked what they'd recommended. He agreed that a lumpectomy was the better choice, and said the only reason to consider a mastectomy would be if the genetic testing showed I have the BRCA 1 or BRCA 2 genes. Those raise the risk of recurrence very significantly, and that for BRCA+ women, bilateral mastectomy is recommended. He said the chance of me having the gene was still very low, under 10%.
The second doctor was the oncologist, Dr. Jelovac, whom I liked best of those that we saw there. She spent about an hour with us, telling us that she had emailed her colleagues with my specifics and what she thought would be best and asking for feedback. Her only deviation from Dr. D's plan was to space the A-C treatments to once every three weeks in order to avoid having to give me Neulasta, which is a category C drug during pregnancy, meaning it has not been proven safe for use in pregnant women, though no negative effects have been attributed to it either. Debbie asked a question about staging and how it was determined, and Dr. J went through it in careful detail. She agreed with GBMC's diagnosis of clinical state II-A.
One of the social workers on staff came in next, provided information about support groups, wigs, and other programs available to help people undergoing treatment for cancer. She was very friendly and helpful.
The last doctor was the radiation oncologist, Dr. Asrari and her PA. I haven't met with anyone in radiation oncology at GMBC yet, so it was a chance to ask all the questions I had about radiation. First, I will definitely have to have it if I don't have mastectomy. With a mastectomy, there's a lot that goes into the decision. Second, I am not a candidate for any of the newer or somewhat experimental radiation options, based on the type of cancer I have. Third, I will get tattooed for it. That one seemed like an especially obvious question for them, but it wasn't anything I'd been able to ask about before then. Small blue dots are tattooed that are then used to help guide the placement of the machine so that the radiation goes exactly where it is supposed to go. The dots don't indicate where the radiation is directed, just how the machine needs to line up. Apparently, once you've got them, you're not supposed to have them removed, though it may be possible to incorporate it into a larger tattoo, as long as they are still visible.
If I remember correctly, we left the Breast Center before my last appointment had been scheduled to even start. It was an overall very positive experience, and if I was to receive treatment at Hopkins, I'd feel quite confident in my care. However, it can't compare with the overwhelmingly positive and comforting experiences I've had at GBMC. Besides, GBMC is easier to get to, and all my other doctors are there (consciously so, as I've never had a negative interaction with anyone affiliated with the hospital. If you need medical care, and you're anywhere near GBMC, I cannot recommend them highly enough).
Debbie and I had a delicious lunch at a deli around the corner from the office before heading to GBMC for my scheduled Teach Session that afternoon.
Since Kevin was going to take off Friday to come to chemo with me, he went on to work and Kevin's mom came with me to the appointments. We got there about half an hour before the first appointment, scheduled at 9, because traffic wasn't nearly as bad as we'd expected. They had me in a room about 20 minutes before 9, where I went over my medical history with a nurse, who put it into the computer even though I'd already filled out and given them the pre-appointment paperwork with all of this information. She then had me change into a gown to wait for the doctors.
The gown is my biggest complaint from my visit to Hopkins. Unlike GBMC, where the gowns were cut in a wrap-front style that provides full coverage despite opening in the front, the Hopkins gowns left me feeling extremely exposed--and would have even without my pregnant belly pushing the bottom open. There was no overlap at all, and the three string ties did very little to keep me covered. It wasn't until just before seeing the last doctor that I realized I could put my sweater on over and zip it up to help me feel more comfortable--and I didn't figure that out until I needed to find the bathroom, which was down a long hallway, through a busy lobby, and halfway down another--and I was not going to do that with my top half on display. Seriously, folks. For as much money as you bring in, you can invest in some wrap-front gowns for your breast center. We're going through enough already.
Rant over. Though the appointments with each doctor had been set for 60 to 90 minutes apart throughout the morning, we saw the second doctor we were scheduled to see first, and still a few minutes before 9. Someone later explained that he was available then and the doctor we were scheduled to see first was running a bit behind, so they adjusted the schedule so I wouldn't have to wait any longer. I really appreciated that.
The surgeon, Dr. Habibi, came in with a couple of PAs or interns, I don't remember which. I explained I was being seen at GBMC but wanted a second opinion, and he asked what they'd recommended. He agreed that a lumpectomy was the better choice, and said the only reason to consider a mastectomy would be if the genetic testing showed I have the BRCA 1 or BRCA 2 genes. Those raise the risk of recurrence very significantly, and that for BRCA+ women, bilateral mastectomy is recommended. He said the chance of me having the gene was still very low, under 10%.
The second doctor was the oncologist, Dr. Jelovac, whom I liked best of those that we saw there. She spent about an hour with us, telling us that she had emailed her colleagues with my specifics and what she thought would be best and asking for feedback. Her only deviation from Dr. D's plan was to space the A-C treatments to once every three weeks in order to avoid having to give me Neulasta, which is a category C drug during pregnancy, meaning it has not been proven safe for use in pregnant women, though no negative effects have been attributed to it either. Debbie asked a question about staging and how it was determined, and Dr. J went through it in careful detail. She agreed with GBMC's diagnosis of clinical state II-A.
One of the social workers on staff came in next, provided information about support groups, wigs, and other programs available to help people undergoing treatment for cancer. She was very friendly and helpful.
The last doctor was the radiation oncologist, Dr. Asrari and her PA. I haven't met with anyone in radiation oncology at GMBC yet, so it was a chance to ask all the questions I had about radiation. First, I will definitely have to have it if I don't have mastectomy. With a mastectomy, there's a lot that goes into the decision. Second, I am not a candidate for any of the newer or somewhat experimental radiation options, based on the type of cancer I have. Third, I will get tattooed for it. That one seemed like an especially obvious question for them, but it wasn't anything I'd been able to ask about before then. Small blue dots are tattooed that are then used to help guide the placement of the machine so that the radiation goes exactly where it is supposed to go. The dots don't indicate where the radiation is directed, just how the machine needs to line up. Apparently, once you've got them, you're not supposed to have them removed, though it may be possible to incorporate it into a larger tattoo, as long as they are still visible.
If I remember correctly, we left the Breast Center before my last appointment had been scheduled to even start. It was an overall very positive experience, and if I was to receive treatment at Hopkins, I'd feel quite confident in my care. However, it can't compare with the overwhelmingly positive and comforting experiences I've had at GBMC. Besides, GBMC is easier to get to, and all my other doctors are there (consciously so, as I've never had a negative interaction with anyone affiliated with the hospital. If you need medical care, and you're anywhere near GBMC, I cannot recommend them highly enough).
Debbie and I had a delicious lunch at a deli around the corner from the office before heading to GBMC for my scheduled Teach Session that afternoon.
Thursday, March 10, 2016
Oncology
Dr. Donegan is my oncologist. Words I never thought I'd say together: my oncologist. But here we are. And if we have to be here, and if I have to say those words, I sure am glad that "Dr. Donegan is" comes first. He is fantastic.
Kevin's mom came again to the appointment with us. I left work early, and she met me at the house so we could ride together. Kevin met us there, having come directly from work in the opposite direction. Kevin got there early enough to get his allergy shot before meeting us for my appointment, so he wasn't there when we arrived. A volunteer in the waiting area directed me to the check in area, where the woman checking me in asked all about the baby and said not one word about cancer or being sorry or any of the things that I've heard over and over since this ordeal began. I commented to Debbie as we walked to the waiting area that I don't think I'd ever have realized it had it not happened, but I was so struck and grateful that to her, for a couple of minutes, I was just a pregnant woman to chat with for a few minutes, even while she checked me in to see an oncologist.
We were called back in only a couple of minutes, and after checking my vitals, the nurse told me to go ahead and eat the rest of my lunch (I hadn't had time since I left work early) and that the doctor would be in soon. She also promised to send Kevin back as soon as he arrived.
Kevin came in, I finished my banana, and Dr. D came in and invited us back to his office. He, like my OB and surgeon, started off by promising to take good care of me and the baby. He had already done his research into treating breast cancer in pregnant women, and he assured me that the chemotherapy would not affect the baby. As an easily observed example, although pregnant women undergoing chemo wind up going bald, their babies are still born with hair. I told him that both Kevin and I were bald as babies, and so were our siblings. Laughing, he said that he couldn't help that, and that we couldn't blame him for it.
After talking for a bit, he said he'd like to do a quick physical exam, and he led Kevin and me back to the exam room we'd been in before. After I changed into a gown, he came back in, felt the lump, checked for anything else in my breasts and lymph nodes, and then left so I could get dressed again and meet him back in his office.
As we talked, he wrote out a to do list for me:
He answered nearly all of the questions on my typed list before I had an opportunity to ask them; the ones he didn't answer were primarily logistical.
At one point, he noticed and complimented my Claddagh ring. I thanked him and explained it was my engagement ring, and didn't Kevin do a good job? I told him I'd noticed his wedding band was a Claddagh as well, and pointed out Kevin's ring, which is engraved with a Claddagh and Celtic knot design. He then told us the story of when he proposed to his wife, also with a Claddagh. I won't share it here, since after telling us, he laughed and remarked that he'd never shared the story with a patient before.
I saved my scariest question for the end of the appointment. I asked my prognosis. He pulled up a website on his computer that will calculate it based on a number of factors. After walking us through and entering each of the factors, he pulled up the results. My chance of recurrence in 10 years is under 20%. He reiterated how well TNBC responds to chemotherapy, acknowledged that a quick look online will make it seem very scary, as there's a lot of publicity about the times it does not respond, and said that we've caught it early and are going to treat it aggressively. As scared as I had been to ask, I felt very reassured and confident that we were going to kick this cancer. Because we have to. I've got a kid kicking around in my belly, and there's nothing I want more than to raise him or her with Kevin.
All told, we spent a good two hours with Dr. D, and just as with Dr. S on Monday, I never felt like we were being rushed or that any questions or concerns we had were an imposition.
Kevin's mom came again to the appointment with us. I left work early, and she met me at the house so we could ride together. Kevin met us there, having come directly from work in the opposite direction. Kevin got there early enough to get his allergy shot before meeting us for my appointment, so he wasn't there when we arrived. A volunteer in the waiting area directed me to the check in area, where the woman checking me in asked all about the baby and said not one word about cancer or being sorry or any of the things that I've heard over and over since this ordeal began. I commented to Debbie as we walked to the waiting area that I don't think I'd ever have realized it had it not happened, but I was so struck and grateful that to her, for a couple of minutes, I was just a pregnant woman to chat with for a few minutes, even while she checked me in to see an oncologist.
We were called back in only a couple of minutes, and after checking my vitals, the nurse told me to go ahead and eat the rest of my lunch (I hadn't had time since I left work early) and that the doctor would be in soon. She also promised to send Kevin back as soon as he arrived.
Kevin came in, I finished my banana, and Dr. D came in and invited us back to his office. He, like my OB and surgeon, started off by promising to take good care of me and the baby. He had already done his research into treating breast cancer in pregnant women, and he assured me that the chemotherapy would not affect the baby. As an easily observed example, although pregnant women undergoing chemo wind up going bald, their babies are still born with hair. I told him that both Kevin and I were bald as babies, and so were our siblings. Laughing, he said that he couldn't help that, and that we couldn't blame him for it.
After talking for a bit, he said he'd like to do a quick physical exam, and he led Kevin and me back to the exam room we'd been in before. After I changed into a gown, he came back in, felt the lump, checked for anything else in my breasts and lymph nodes, and then left so I could get dressed again and meet him back in his office.
As we talked, he wrote out a to do list for me:
- get an echocardiogram (chemo can be hard on the heart, so they want to check the function first)
- blood work
- get a Portacath installed (so I won't have to have a new IV for each chemo, since chemo is rough on veins and since the chemo I'll be having can be quite toxic if it leaves the veins)
- attend a Teach Session (orientation to the infusion center and what to expect on chemo days);
- genetic testing (important but not an immediate need; it can wait until a little further down the line)
- chemotherapy: done in two "chapters"
- Chapter 1: A-C (Adriamycin and Cytoxan) every two weeks for four treatments. I'll have to receive (or give myself) a shot of Neulasta 24 hours after each treatment to stimulate my bone marrow and help my blood counts recover, since I'll be receiving treatments closer together, a "dose-dense" schedule that TNBC is particularly responsive to. I'll start this as soon as possible, hopefully by late next week.
- Chapter 2: Taxol, administered weekly for 12 weeks or biweekly for 8 weeks. I'll start this after the baby is born; that'll give me a few weeks after finishing A-C to recover before the baby comes, and then I'll have a couple weeks before starting.
- Stay hopeful. This was the last thing he wrote on my to do list. I appreciated it.
He answered nearly all of the questions on my typed list before I had an opportunity to ask them; the ones he didn't answer were primarily logistical.
At one point, he noticed and complimented my Claddagh ring. I thanked him and explained it was my engagement ring, and didn't Kevin do a good job? I told him I'd noticed his wedding band was a Claddagh as well, and pointed out Kevin's ring, which is engraved with a Claddagh and Celtic knot design. He then told us the story of when he proposed to his wife, also with a Claddagh. I won't share it here, since after telling us, he laughed and remarked that he'd never shared the story with a patient before.
I saved my scariest question for the end of the appointment. I asked my prognosis. He pulled up a website on his computer that will calculate it based on a number of factors. After walking us through and entering each of the factors, he pulled up the results. My chance of recurrence in 10 years is under 20%. He reiterated how well TNBC responds to chemotherapy, acknowledged that a quick look online will make it seem very scary, as there's a lot of publicity about the times it does not respond, and said that we've caught it early and are going to treat it aggressively. As scared as I had been to ask, I felt very reassured and confident that we were going to kick this cancer. Because we have to. I've got a kid kicking around in my belly, and there's nothing I want more than to raise him or her with Kevin.
All told, we spent a good two hours with Dr. D, and just as with Dr. S on Monday, I never felt like we were being rushed or that any questions or concerns we had were an imposition.
A Tumor by Any Other Name...
As we drove away from the oncologist's office at GBMC, Janet declared that we needed to give her tumor a name. She had recently read Why I Hated Pink, a memoir by nurse and breast cancer survivor Maryellen D. Brisbois, and the author had dubbed her own tumor The Fucker. Moreover, a friend from our church has dealt with a blood clot in her leg for 16 years now; she calls it Cloteus (Claudius?) Maximus, and insists that her husband and son celebrate its birthday. So yeah, I get it - much like Lord Voldemort, you can't be afraid to call your nemesis by its name. Don't give it that kind of power over you.
I tried to be a good English/Theatre major and drop a punny Shakespeare reference. I suggested Titania, the queen of the fairies from A Midsummer Night's Dream. (It's also the name of the largest moon of Uranus, according to my crack Google research. Titania? Uranus? This isn't even fair.) Neither of us really loved that one, though, so I dug deeper.
"You should call your tumor Titmonster."
Janet dissolved into giggles, which just happens to be one of my favorite sounds in the world. Done deal. We have met the enemy, and it is Titmonster.
I tried to be a good English/Theatre major and drop a punny Shakespeare reference. I suggested Titania, the queen of the fairies from A Midsummer Night's Dream. (It's also the name of the largest moon of Uranus, according to my crack Google research. Titania? Uranus? This isn't even fair.) Neither of us really loved that one, though, so I dug deeper.
"You should call your tumor Titmonster."
Janet dissolved into giggles, which just happens to be one of my favorite sounds in the world. Done deal. We have met the enemy, and it is Titmonster.
Tuesday, March 8, 2016
Something bright for your day
We drove back from Charlotte Sunday night. We took off Monday from work because we had an appointment with my OB and then with the breast surgeon.
Kevin's mom Debbie came with us to both appointments, which was particularly
nice since she went through so much of this process with a close
relative a couple of years ago. Despite being worked in and
triple-booked, we had just a short wait to see Dr. Khouzami. His nurse didn't
know what was going on, so when she saw me on an off week, she was
confused, then stunned. I got the full treatment at my appointment: pee
in a cup, measure my uterus, listen to the heartbeat. Debbie got to hear
the baby's heartbeat, which was a perk I hadn't planned on but found exciting. So did she.
Then we went into Dr. K's office to talk about what was going on and what we might expect. Thanks to help from friends who have been on the cancer boat, I had a long and pretty thorough list of questions prepared. (side note: always write down questions for doctors, especially for complicated appointments. It's something I've been doing for a while anyway, but I spent a lot more time on questions for these appointments. I keep a running list on my phone using the Notes app, and it's really helpful. I'd forget half the stuff I wanted to ask about if I didn't do it.)
Gestational breast cancer isn't common, but Dr. K has seen a handful of women with it over his career. He's also treated a number of patients who became pregnant sometime after fighting cancer. The first thing he said, and the first thing I have heard from nearly every provider I've seen, is that the baby is going to be fine. Dr. K had a copy of my pathology report, which he gave to me before I left, even though it didn't mean much of anything to me. He said I'd definitely need chemotherapy, surgery, and radiation; the radiation would come after the baby is born, since that would harm the baby. Chemo, he reminded me, is remarkably safe to use during pregnancy after the first trimester, since the particles (?) are too large to pass through the placenta. Surgery is also safe.
As for timing, he wanted to plan to deliver Baby Brotzman around 36 weeks, at the end of May/beginning of June and just 13 weeks away. Because chemo attacks all fast-growing cells, it also destroys white blood cells, so I would need to stop chemo between three and four weeks before delivery so that my body could recover and be ready for birth without the risk of complications from infection.
Then he told us about the surgeon. First, he said, she is excellent, one of the best and he always recommends her. Second, you should know that she is hard for some people to take. She has a bit of a foul mouth. Laughing, I said we'd get along just fine and I liked her already. He was pretty amused.
So we made our way through the hospital to the breast center. I completed the paperwork for the office and gave my mom a quick call to update her; we were still talking when we were called back to the exam room. We met first with the nurse practitioner, Angela, who gave us an idea what to expect for the appointment and then did a brief physical exam. (By the end of the day I'd remark that it felt like more people had seen my boobs in the past week than in my entire life. It was a little disconcerting...and it was only the beginning.) Angela told us Dr. Schnaper would explain everything to us and said that Dr. S would even take notes so that I could just listen and take it in. She said the doctor would be fine with us recording as long as we asked.
Dr. S came in a couple minutes later. She did another exam, feeling the lump and checking for any others. She thanked us for asking if we could record and then pulled up my ultrasound films. She was incredibly thorough, explaining what she could see in the images and what they meant. She was good at it--the blobs and shadows started making more sense to me, and I felt like I could even see some of what she was talking about. She left me to get dressed again, and we met in her office a minute later.
Sitting at a round table, she pulled out some note paper and the pathology report, and began explaining what she knew about my cancer and how we were going to address it.
She started with the different ways cancer is classified and how those classifications determine how it's treated. My tumor is an invasive ductal carcinoma, more specifically known as Triple Negative Breast Cancer. That means it does not have receptors for the Estrogen or Progesterone hormones, nor for the HER-2/neu factor. Typically, she said, it's less good if a tumor is ER-/PR- as it eliminates hormone therapy as a treatment option. However, since I'm pregnant and my hormones are going crazy, it's probably quite a good thing. A HER2- status is good; as I understand it, it plays a role in the aggressiveness of the tumor. The cell differentiation is high, which is less good. It means that, despite the HER2- status, my tumor is more aggressive. She said she wouldn't be surprised if I had had no lump two months ago. I admitted I was not very good about checking my breasts every month, but that the lump definitely was not there four months previous, which was the last time I remember doing a check. It also wasn't there (or at least big enough to feel) when I had my first prenatal appointment with Dr. K; he checked then, too.
As for size, my tumor measured 3.4 centimeters under ultrasound, putting it in the T-3 range of 3-5cm. There appeared to be no nodal involvement, which is very good. That means they don't think any of the cancer has left my breast via my lymph nodes. Sometimes they'll do an MRI to check for other spots, but since I'm pregnant, and they don't have reason to suspect it's traveled to the nodes, no MRI for me right now.
As for treatment, the standard of care for Triple Negative Breast Cancer (TNBC) is chemo followed by surgery followed by radiation. She'd initially thought that she would want to operate first for me since I was pregnant, but during a consultation conversation with the oncologist she is referring me to, she decided there was no reason to treat me any differently just because I was pregnant. The greatest risk with this cancer is its aggression, so we need to treat that first. The way to treat it is with a whole-body treatment, or chemotherapy. Once I've finished chemotherapy, which she said would take about six months, I'll have surgery to remove the lump and margins. She explained the options for surgery and said that there is no indication for me to have a mastectomy. Lumpectomy and sentinel node biopsy followed by radiation has a 3% chance of same breast recurrence. Mastectomy has a 2% chance of chest wall recurrence (it couldn't come back in the same breast, since the breast is no longer there). Since a mastectomy is a much more in depth and difficult surgery, she highly recommends against it in most cases. I quite like this idea. No drains, no reconstruction, easier recovery (with a newborn!)? Definitely.
Dr. S wanted me to have a mammogram and more systematic ultrasound on both breasts to look for any other suspicious areas; she said that while she understands why they didn't do the mammogram when I was in last week, the radiation from a mammogram is about what a person receives during a flight to California, which is certainly permitted in the second trimester of pregnancy. She had me scheduled already for the radiology procedures, and it gave us enough time to go get some lunch and call my mom to update her.
We had a brief wait before I was called back for my scans. While we were waiting, Dr. S and another doctor, who was very, very pregnant, came through the lobby. Dr. S greeted me like an old friend and not at all like we'd just met a couple hours ago and only because she is going to operate on me in a few months. She introduced me to her partner (we joked about how almost all maternity clothes were stripey) and told me she had some things for me in the office if I'd just go back and ask for her secretary. I thanked her and went on back. I found the woman, who led me to a conference room and gave me a copy of the notes Dr. S had taken, some additional reading material, and the appointment card for the oncologist (this Thursday afternoon). Then she handed me a small bud vase with a pink rose and some baby's breath in it, tied with a pink ribbon. Dr S wanted me to have this so I would have something bright for my day. My eyes filled with tears; I don't have the words to express how comforting and kind the gesture was, and I thanked her before heading back out to wait.
Mammograms, of course, are not fun procedures. However, my person was excellent and we had some fun talking about differences living in Maryland versus living in the Carolinas, where she also grew up and lived until a few years ago. Still, that is a cold and squishy machine.
My ultrasound tech was the same as I'd had for the biopsy, and again, I really liked her. She is also pregnant, but several weeks ahead of me. We talked about the temptation to sneak a peek at the babies since all the equipment is right there, but blah, blah, blah, it's against the rules. She said she was so sorry to hear that the mass was cancer; she had really hoped it'd be benign. I agreed. She commented about how much she liked Dr. S, and I told her about the rose. She said she didn't remember seeing anyone else with one, and I was struck again with how lucky I was to have such a caring doctor, not to mention her skills. And Baby Brotzman kept reminding me how it was all going to be okay by kicking me throughout the procedure.
The scans took longer, since they were looking in much more detail and checking both breasts. She finished, said she would go talk to the radiologist to see if there was anything else she wanted, and be back soon. A few minutes later, she came back in with the radiologist, the same who had called me on Thursday, and Dr. S. The tech and the radiologist went right to work rescanning my right breast while Dr. S explained that she was there to check on me and that there was one spot that the tech was unsure about and that they were just going to recheck it. I thanked Dr. S for coming and for the rose. I told her I maybe cried a little. She said, Oh, I'll be sure not to do that again! I told her how much it meant to me, and that I was grateful .
After several minutes of the radiologist looking, and then the tech, they found the spot, and the radiologist confirmed it was just a shadow and nothing to be concerned about. I was relieved; I don't think I'd realized how nervous I was until they said it was nothing.
Finally done, I changed back into my clothes and went out to meet Kevin and Debbie so we could go home. It was a long and exhausting day, and I was ready for a nap.
Then we went into Dr. K's office to talk about what was going on and what we might expect. Thanks to help from friends who have been on the cancer boat, I had a long and pretty thorough list of questions prepared. (side note: always write down questions for doctors, especially for complicated appointments. It's something I've been doing for a while anyway, but I spent a lot more time on questions for these appointments. I keep a running list on my phone using the Notes app, and it's really helpful. I'd forget half the stuff I wanted to ask about if I didn't do it.)
Gestational breast cancer isn't common, but Dr. K has seen a handful of women with it over his career. He's also treated a number of patients who became pregnant sometime after fighting cancer. The first thing he said, and the first thing I have heard from nearly every provider I've seen, is that the baby is going to be fine. Dr. K had a copy of my pathology report, which he gave to me before I left, even though it didn't mean much of anything to me. He said I'd definitely need chemotherapy, surgery, and radiation; the radiation would come after the baby is born, since that would harm the baby. Chemo, he reminded me, is remarkably safe to use during pregnancy after the first trimester, since the particles (?) are too large to pass through the placenta. Surgery is also safe.
As for timing, he wanted to plan to deliver Baby Brotzman around 36 weeks, at the end of May/beginning of June and just 13 weeks away. Because chemo attacks all fast-growing cells, it also destroys white blood cells, so I would need to stop chemo between three and four weeks before delivery so that my body could recover and be ready for birth without the risk of complications from infection.
Then he told us about the surgeon. First, he said, she is excellent, one of the best and he always recommends her. Second, you should know that she is hard for some people to take. She has a bit of a foul mouth. Laughing, I said we'd get along just fine and I liked her already. He was pretty amused.
So we made our way through the hospital to the breast center. I completed the paperwork for the office and gave my mom a quick call to update her; we were still talking when we were called back to the exam room. We met first with the nurse practitioner, Angela, who gave us an idea what to expect for the appointment and then did a brief physical exam. (By the end of the day I'd remark that it felt like more people had seen my boobs in the past week than in my entire life. It was a little disconcerting...and it was only the beginning.) Angela told us Dr. Schnaper would explain everything to us and said that Dr. S would even take notes so that I could just listen and take it in. She said the doctor would be fine with us recording as long as we asked.
Dr. S came in a couple minutes later. She did another exam, feeling the lump and checking for any others. She thanked us for asking if we could record and then pulled up my ultrasound films. She was incredibly thorough, explaining what she could see in the images and what they meant. She was good at it--the blobs and shadows started making more sense to me, and I felt like I could even see some of what she was talking about. She left me to get dressed again, and we met in her office a minute later.
Sitting at a round table, she pulled out some note paper and the pathology report, and began explaining what she knew about my cancer and how we were going to address it.
She started with the different ways cancer is classified and how those classifications determine how it's treated. My tumor is an invasive ductal carcinoma, more specifically known as Triple Negative Breast Cancer. That means it does not have receptors for the Estrogen or Progesterone hormones, nor for the HER-2/neu factor. Typically, she said, it's less good if a tumor is ER-/PR- as it eliminates hormone therapy as a treatment option. However, since I'm pregnant and my hormones are going crazy, it's probably quite a good thing. A HER2- status is good; as I understand it, it plays a role in the aggressiveness of the tumor. The cell differentiation is high, which is less good. It means that, despite the HER2- status, my tumor is more aggressive. She said she wouldn't be surprised if I had had no lump two months ago. I admitted I was not very good about checking my breasts every month, but that the lump definitely was not there four months previous, which was the last time I remember doing a check. It also wasn't there (or at least big enough to feel) when I had my first prenatal appointment with Dr. K; he checked then, too.
As for size, my tumor measured 3.4 centimeters under ultrasound, putting it in the T-3 range of 3-5cm. There appeared to be no nodal involvement, which is very good. That means they don't think any of the cancer has left my breast via my lymph nodes. Sometimes they'll do an MRI to check for other spots, but since I'm pregnant, and they don't have reason to suspect it's traveled to the nodes, no MRI for me right now.
As for treatment, the standard of care for Triple Negative Breast Cancer (TNBC) is chemo followed by surgery followed by radiation. She'd initially thought that she would want to operate first for me since I was pregnant, but during a consultation conversation with the oncologist she is referring me to, she decided there was no reason to treat me any differently just because I was pregnant. The greatest risk with this cancer is its aggression, so we need to treat that first. The way to treat it is with a whole-body treatment, or chemotherapy. Once I've finished chemotherapy, which she said would take about six months, I'll have surgery to remove the lump and margins. She explained the options for surgery and said that there is no indication for me to have a mastectomy. Lumpectomy and sentinel node biopsy followed by radiation has a 3% chance of same breast recurrence. Mastectomy has a 2% chance of chest wall recurrence (it couldn't come back in the same breast, since the breast is no longer there). Since a mastectomy is a much more in depth and difficult surgery, she highly recommends against it in most cases. I quite like this idea. No drains, no reconstruction, easier recovery (with a newborn!)? Definitely.
Dr. S wanted me to have a mammogram and more systematic ultrasound on both breasts to look for any other suspicious areas; she said that while she understands why they didn't do the mammogram when I was in last week, the radiation from a mammogram is about what a person receives during a flight to California, which is certainly permitted in the second trimester of pregnancy. She had me scheduled already for the radiology procedures, and it gave us enough time to go get some lunch and call my mom to update her.
We had a brief wait before I was called back for my scans. While we were waiting, Dr. S and another doctor, who was very, very pregnant, came through the lobby. Dr. S greeted me like an old friend and not at all like we'd just met a couple hours ago and only because she is going to operate on me in a few months. She introduced me to her partner (we joked about how almost all maternity clothes were stripey) and told me she had some things for me in the office if I'd just go back and ask for her secretary. I thanked her and went on back. I found the woman, who led me to a conference room and gave me a copy of the notes Dr. S had taken, some additional reading material, and the appointment card for the oncologist (this Thursday afternoon). Then she handed me a small bud vase with a pink rose and some baby's breath in it, tied with a pink ribbon. Dr S wanted me to have this so I would have something bright for my day. My eyes filled with tears; I don't have the words to express how comforting and kind the gesture was, and I thanked her before heading back out to wait.
Mammograms, of course, are not fun procedures. However, my person was excellent and we had some fun talking about differences living in Maryland versus living in the Carolinas, where she also grew up and lived until a few years ago. Still, that is a cold and squishy machine.
My ultrasound tech was the same as I'd had for the biopsy, and again, I really liked her. She is also pregnant, but several weeks ahead of me. We talked about the temptation to sneak a peek at the babies since all the equipment is right there, but blah, blah, blah, it's against the rules. She said she was so sorry to hear that the mass was cancer; she had really hoped it'd be benign. I agreed. She commented about how much she liked Dr. S, and I told her about the rose. She said she didn't remember seeing anyone else with one, and I was struck again with how lucky I was to have such a caring doctor, not to mention her skills. And Baby Brotzman kept reminding me how it was all going to be okay by kicking me throughout the procedure.
The scans took longer, since they were looking in much more detail and checking both breasts. She finished, said she would go talk to the radiologist to see if there was anything else she wanted, and be back soon. A few minutes later, she came back in with the radiologist, the same who had called me on Thursday, and Dr. S. The tech and the radiologist went right to work rescanning my right breast while Dr. S explained that she was there to check on me and that there was one spot that the tech was unsure about and that they were just going to recheck it. I thanked Dr. S for coming and for the rose. I told her I maybe cried a little. She said, Oh, I'll be sure not to do that again! I told her how much it meant to me, and that I was grateful .
After several minutes of the radiologist looking, and then the tech, they found the spot, and the radiologist confirmed it was just a shadow and nothing to be concerned about. I was relieved; I don't think I'd realized how nervous I was until they said it was nothing.
Finally done, I changed back into my clothes and went out to meet Kevin and Debbie so we could go home. It was a long and exhausting day, and I was ready for a nap.
Thursday, March 3, 2016
Finding Out
My phone rang around 11am on Thursday, March 3. I was in Charlotte
for my grandmother’s funeral, which was to be held the following morning. I was expecting the call, but I wasn’t expecting it so soon. I was excited—a sooner call back should mean good news.
The radiologist introduced herself and said she had the biopsy results for me. I was kind of excited—they were about to tell me that the lump was benign, and it was nothing to worry about! When there were problems, that’s when it took longer, since they’d have to do additional testing.
I jumped up and raced into the next room where Kevin and my parents were chatting. I gestured to them and to the phone, which I then put on speaker phone.
“It’s breast cancer. It’s called an invasive ductal carcinoma, which means that the tumor has left the milk duct where it originated.”
Oh.
“Jesus.
So what does this mean? What will I have to do now?”
My OB has the report; I can go ahead and call him for more information. They’ll set me up with a breast surgeon; he can make a recommendation, but the radiology department isn’t allowed to do it. The thing to remember is that it’s okay if I don’t see the doctor by tomorrow, since these tumors don’t grow that rapidly. They’ll get me scheduled within about a week.
"I’m sorry, good luck."
My obstetrician said that he was just about to call me when I called.
“Janet. We’ll take good care of you and the baby, and you’ll both be just fine. We’ve been treating women with cancer during pregnancy for over 30 years, and almost all of the treatment options are available to you even though you’re pregnant. The only thing we can’t do is radiation. Chemotherapy and surgery are fine. Can you come in today to talk more?
Oh, I’m so sorry.
Will you be back on Monday? We’ll schedule you to see me and to see the breast surgeon. She is wonderful."
I called my primary care and my asthma doctors later in the day and left messages to let them know. Both called me back within 24 hours. My doctors are fantastic.
The radiologist introduced herself and said she had the biopsy results for me. I was kind of excited—they were about to tell me that the lump was benign, and it was nothing to worry about! When there were problems, that’s when it took longer, since they’d have to do additional testing.
I jumped up and raced into the next room where Kevin and my parents were chatting. I gestured to them and to the phone, which I then put on speaker phone.
“It’s breast cancer. It’s called an invasive ductal carcinoma, which means that the tumor has left the milk duct where it originated.”
Oh.
“Jesus.
So what does this mean? What will I have to do now?”
My OB has the report; I can go ahead and call him for more information. They’ll set me up with a breast surgeon; he can make a recommendation, but the radiology department isn’t allowed to do it. The thing to remember is that it’s okay if I don’t see the doctor by tomorrow, since these tumors don’t grow that rapidly. They’ll get me scheduled within about a week.
"I’m sorry, good luck."
My obstetrician said that he was just about to call me when I called.
“Janet. We’ll take good care of you and the baby, and you’ll both be just fine. We’ve been treating women with cancer during pregnancy for over 30 years, and almost all of the treatment options are available to you even though you’re pregnant. The only thing we can’t do is radiation. Chemotherapy and surgery are fine. Can you come in today to talk more?
Oh, I’m so sorry.
Will you be back on Monday? We’ll schedule you to see me and to see the breast surgeon. She is wonderful."
I called my primary care and my asthma doctors later in the day and left messages to let them know. Both called me back within 24 hours. My doctors are fantastic.
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