My journey with breast cancer began on May 23, 2024 when I was diagnosed with Invasive Ductal Carcinoma. Between May 23-27, I phoned my closest friends and family to tell them individually. Then on May 28, I started a CaringBridge, which I shared widely. I have continued to use it throughout my journey. Because CaringBridge requires a log-in and my blog doesn't, I've copied all of my entries here so that anyone can access them. If you or a loved one are newly diagnosed with breast cancer, I wish you the very best. Every case is different, but I hope my story will give you a clearer picture of one possible journey.
May 28, 2024: The Beginning
First and foremost, thank you in advance for your support through my breast cancer journey. I am so thankful to have such wonderful friends and family. I will be leaning on you for emotional, spiritual, and physical help. I want you to know how much it means to me that you all are there.
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April 24: I had my regularly scheduled mammogram. I had no symptoms or concerns going in. The mammogram showed two suspicious areas on my right breast (scattered areas of fibroglandular density; upper outer quadrant focal asymmetry, middle third depth). I was scheduled for a follow-up mammogram three weeks later.
May 20: Through mammogram, the doctor decided one suspicious area was not a worry for now, but that they would do a follow-up mammogram and ultrasound in six months. The upper outer quadrant did look concerning enough that they did an immediate ultrasound and biopsy, taking five samples.
May 23: In the afternoon, a nurse called to tell me that the tumor is malignant. I have Invasive Ductal Carcinoma. I was alone when I got the news, but immediately called Steve at work. I told Trevor, my parents, and my sister that day. Later that evening, I received a pathology report. The provisional histologic grade is 1 and the tumor is 6 mm on core. Lymphovascular invasion, in situ component, and calcifications are all not identified. I was given a surgery consultation date of May 28, five days after diagnosis.
May 28: I had a 2:30 Surgical consultation appointment scheduled and thought I'd have the morning open to do all the things that need to be done. Nope. At 9:00 am, as soon as I got home from taking Trevor to school, I got a call for a pre-surgical consultation appointment that I wasn't expecting. She went over a bunch of procedural stuff, then she scheduled me for a 10:30 am appointment with Genetics.
Fortunately, Genetics was a phone appointment. I had about 30 minutes to gather the medical history of every blood relative I have, to the best of my ability, of course. With everything going on, I can barely remember my own name and age, let alone the ages each of my relatives were when they got their diagnoses. But I did my best, with help from Mom.
Genetics ordered a blood draw, with expedited testing for 9 genes related to breast cancer, with results in approximately a week. They will then test 53 more genes for other stuff, since they have the sample. Those results will take 2+ weeks.
As I was writing notes from that appointment, Radiation called. Since the biopsy of the sketchy-looking area was positive, they have ordered a biopsy of the second area that they’d said looks fine but was to be monitored. So now I have a second biopsy on May 31.
At 1:45, Steve and I headed to Vallejo Kaiser for the orientation, surgical consultation, and blood draw. I learned that I am positive for Estrogen and Progesterone Receptors (ER/PR+), which means endocrine therapy will help me post-surgery. The HER test came back inconclusive; further tests are being done. The results of that, as well as the biopsy, will affect a lot of decisions.
There is no advantage for me to have a mastectomy over a lumpectomy; even if the second biopsy is positive, the surgeon recommends two lumpectomies over a mastectomy. Surgery is tentatively scheduled for June 10, time of day unknown. Trevor returns from Grad Nite at Disneyland that morning, so I will likely have to wait awhile to hear the stories and see photos. But at least I know I will be able to attend his graduation on June 6, celebrate his 18th birthday on June 7, and see him off to Grad Nite on June 8.
My doctor expects the surgery to go very smoothly and he expects that I will be Stage 1. There is a 10% chance that the margins will not be clear following surgery and I will have a second surgery 2-3 weeks later. Obviously, if there are two lumpectomies, they each have separate risks of not being complete. During the surgery, I will have a sentinel node biopsy to be sure there is no spread. The lymph nodes look clear on the ultrasound, but this will check. Apparently, my urine will be blue for awhile following the procedure and I should not be alarmed. And I certainly should not go to the ER because of it. I am learning a lot of weird stuff about being a cancer patient.
Until we have test results back and surgery is complete, we won't know about radiation and/or chemo. As a planner, I hate not knowing. But one step at a time. I need to get through surgery first.
The blood draw was no fun (five vials) but will provide a lot of answers to my many questions.
Mood check: Good. I'm exhausted and overwhelmed, but optimistic. Everything I heard today gives me a lot of hope.
May 29, 2024: HER Status
It's been another long day and it's only 2:45 pm. My morning started with a phone call from Kaiser's scheduler. I received notifications for several new appointments that I wasn't aware I'd be having. I love how thorough they're being, but I hadn't realized that being a pre-op cancer patient is a full time job. Good thing my boss doesn't care that I'm ignoring my own work! (I'm my own boss, for those who don't know. I don't currently have any outside contracts or freelance assignments, thank goodness. Just my own blog.)
This morning was supposed to be Trevor's behind-the-wheel driving test, but due to a weird quirk with the computer system, he can't take the test until he turns 18 next week at the earliest. We found this out after standing in line at the DMV. The clerk was patient and helpful, so at least there was that. I'd been hoping Trevor would get his license today so that he could drive himself places that conflict with my appointments, but no. Hopefully he can get (and pass) a test soon and it won't be an issue. Local friends: it's likely that at some point I'll be asking for help driving Trevor around.
Test results have been pouring in. In addition to the bloodwork I had to do for Genetics, my GP ordered tests for pretty much everything. I'm happy to announce that everything is coming back normal, except for slightly elevated cholesterol. That's not too surprising since I consider cheese to be one of the four food groups (the others are bread, dessert, and other.) No genetic results yet. I did, however, get the results from the HER2 FISH test. It is negative. So I am HR+ HER2-. That is the most common result for breast cancers and it will guide treatment after surgery.
Mood: Overwhelmed, but good. Tonight is a pre-graduation ceremony for just the 99 seniors in Trevor's Early College program (they graduate for real next week with the 400+ seniors at their official high school, which Trevor has set foot on exactly one time), so I'm excited for that. My sister and niece will be joining us, so that's extra awesome.
May 30, 2024: It's a good thing I love learning...
Today I had a two-hour online class about breast cancer rehabilitation and post-surgical physical therapy. It was very helpful, but wow. There's so much to know. I took a ton of notes and the PT sent handouts. I have a bunch of specific exercises to do following surgery... two YEARS' worth of exercises. I did not expect that, but I'll do whatever it takes.
I also learned a ton about the lymphatic system. It (obviously) has to work a lot harder after surgery, even if I'm fortunate enough not to have nodes removed (still unknown). I will be at moderate risk of lymphedema for five years (!!) before the risk drops, but will remain at risk for the rest of my life.
I also had a peri-operative appointment, where I learned more about to expect before, during, and after my surgery. The doctor ordered an EKG and more bloodwork. I'm not pleased about the bloodwork; it seems like they took plenty just two days ago. Apparently not. They need a bunch more. Fortunately, I can do both the EKG and the bloodwork tomorrow after my biopsy and subsequent mammogram to make sure the marker is in the right place. Did you know that they leave a titanium marker behind in the breast after biopsy? I learned that last week, when I had the initial biopsy. So much learning today!
On top of the appointments, today I received five different calls from Kaiser. I'm not joking that being a breast cancer patient is a full time job. Between all the appointments and the phone calls, I can't get anything else done. It felt awkward, but I did reach out for help today. Big thanks to Hemina for bringing us milk. It was such a relief to not have to add a grocery store run to my crazy day. My stress is fairly high and my energy is fairly low, so having a friend take that off my to-do list was such a blessing.
While my overall energy hasn't been great, for the past five days or so, I am experiencing bursts of mania, followed by exhaustion. I'll suddenly realize that I've been racing around trying to get things done, to the point that I'm dripping with sweat. Tomorrow I'll be back on a week's worth of post-biopsy restrictions, so I'll need to be a lot more careful about resting.
Mood: Great! Steve and I had a fantastic dinner in Yountville celebrating our 20th anniversary. We barely talked about cancer. He surprised me with a beautiful china bunny necklace (since the traditional 20th anniversary gift is china). It was a wonderful evening together.
May 31, 2024: Breast Biopsy #2
I was at the hospital bright and early this morning for the biopsy of the second, less suspicious mass that showed on the original mammogram. The doctors all think it looks benign, but they’re testing it anyway just in case. I expected this biopsy be identical in terms of discomfort to the one I had on May 20, but because of the location of the mass, it was worse. The ultrasound was more uncomfortable, but that was nothing compared to the lidocaine shot in the nipple. I highly unrecommend that. It’s ironic that the painkiller caused me the most pain. I had to have a second lidocaine shot from a different, deeper angle and that one was more like the May 20 one - no worse than a vaccination. The doctor took 4 core samples and I should get results in the middle of next week. It doesn’t matter all that much what the results are. If it’s malignant, the surgeon will do a second lumpectomy at the same time as the first. It’s smaller than the first, which is already relatively small. Since I already have a titanium marker from the first biopsy, they had to choose a different shape for the second one. I am now walking around with a BARD twist and a BARD Venus.
Next was EKG. That was quick and easy and I already have the results. Everything is normal.
Then blood. There was a long wait, which made me especially thankful for my friend Stephanie, who met me at the hospital to keep me company. She was my favorite, and most frequent, substitute back in my teaching days. I did not get a good phlebotomist, so I got poked multiple times (in both arms) but at least that’s done. Three vials this time.
To add insult to injury, I had to do copays for everything today. Last time, the biopsy and bloodwork were free. This time, $250 and $10 respectively, plus $10 for the EKG. Annoying. Still, the $300 I have spent so far on cancer treatment makes me so grateful we have health insurance.
I fell asleep minutes after I got home from the hospital. Other than waking up to alarms to change my ice packs every 30 minutes, I slept for several hours. I still feel quite tired.
Mood: Fine, but mentally and physically worn out. I feel like treating myself after the week I’ve had. I’m going to do some internet window shopping and put some stuff on my wishlist so that I can just click order when I feel like I deserve a pick-me-up. :)
June 3, 2024: Apocrine Cyst
After a restful weekend with no calls from Kaiser, the calls started back up again this morning. Now they want me to do a sleep study this week to make sure I don't have sleep apnea that could affect surgery. I'm not sure what happens if I do have sleep apnea; hopefully I don't and it's a non-issue. I don't think I do, but I didn't think I had cancer either, so what do I know.
I just got the results from Biopsy #2 and I'm happy to report that it is a benign mass (apocrine cyst), just as the doctors expected. So that means I should only have a single lumpectomy (pending more test results) and sentinel node biopsy, one week from today. I don't know the time of day yet and may only find out the night before. Again, this is very hard as a planner. I've arranged for a classmate's parent to bring Trevor home following his Grad Nite trip on the day of surgery, as well as on Thursday when I have my next appointment.
While the results of Biopsy #2 (benign) were astronomically better than the results of Biopsy #1 (malignant), recovery from #2 has been much worse. It's getting better each day, but there's still some pain and the bruising is hideous. Last time, I had to remind myself not to use my arm; this time, the pain of using it reminds me. It's not terrible by any means and definitely not a cause for concern. I'm just pointing out that I was very lucky the first time that it healed so quickly and easily.
This past week reminds me of the recurring nightmare we all have that we're not prepared for a final exam (no? just me?). In my case, the exam is Anatomy / Physiology. A week ago, I barely knew I had a lymphatic system, let alone how it functions and the risks of lymphedema. I've never once questioned my eosinophil count... or even knew what that is. (It's currently high, as expected with both seasonal allergies and breast cancer.) I didn't know the word "apocrine" until an hour ago. With each new message or call from Kaiser, I get more homework and find out about more that's on the imaginary final. Steve noticed how much Physiology homework I've been doing and told me, "You're super smart with multiple degrees and you're having to research everything. What do dumb people do when they get cancer?" It made me laugh. Obviously, I could (should?) skip the research and cramming and just trust my doctors, but it's not in my nature. I love learning, even when it's a subject I never wanted to understand. Maybe someday I'll answer a trivia question correctly and I can thank breast cancer.
Mood: Good. The rest over the weekend made a world of difference. Scout friends Bobby and Logan brought me a huge bouquet of beautiful flowers that I'm enjoying. I'm happy about the results of Biopsy #2. And I'm so grateful for the messages and kind words I've been getting from all of you.
June 7, 2024: Surgery in T-Minus 60 Hours
This has been quite a week, full of highs and lows. The highs were all about Trevor. On Wednesday night, we attended a dinner where he was honored as a scholarship recipient... and came home to a letter in the mail informing him of another scholarship he's received! Yesterday he graduated from high school and today is his 18th birthday. I am so incredibly thankful that I was able to be there for each of those and to celebrate my incredible son.
Medically, it's been a challenging few days. Biopsy #2 did not heal nearly as quickly or easily as Biopsy #1 did. I've had to do more tests and have had multiple appointments at the hospitals in both Vacaville and Vallejo, often timed for exactly when I need to be driving Trevor somewhere. Fortunately, a lot of wonderful people have stepped in to help.
The medical calls continue to come nonstop. In fact, I was leaving Baskin-Robbins with Trevor's ice cream cake a few hours ago when the most recent call came in. Fortunately, the information was not urgent, so I was able to go home and put the cake in the freezer before returning the call. I'm an open book and will answer any questions you have about my cancer journey, but I'm not crazy about taking medical calls when I'm in line at a store, as I've now had to do more than once.
The best news I've received via an ill-timed phone call is that I am negative for all nine of the known breast cancer predisposition genes. This is a huge relief, as it means that I am not at high risk of recurrence and thus don't need to consider a prophylactic mastectomy (or two). It also means I'm not a high risk for ovarian cancer.
Last night I had to do a sleep study to check for sleep apnea before anesthesia. Unfortunately, my allergies were in high gear last night and I slept very poorly, due to my inability to breathe through my nose. There was no way for me to report this, as I had to drop the equipment off early this morning to a dropbox that had no person. The results came back quickly: mild sleep apnea, which is optional to treat medically. I'll talk with my doctor(s) about it, but I don't intend to treat it as I'm suspicious that the results are not accurate. I don't know enough about how it measures breathing to know whether it can account for pollen-induced major congestion. Losing weight can help with sleep apnea, so that's another incentive for me to drop some pounds.
Surgery is on Monday. I begin prep at 4:15 am (!) and have numerous appointments before the 12:31 pm surgery begins. Steve will be there, of course. If all goes well, I expect to be home in the late afternoon. I would love prayers and good thoughts for a successful surgery and recovery. Huge thanks to dear friends who have sent me a small pick-me-up in the last few days. It means the world that you're thinking of me and that you're in my corner during this fight.
Mood: Overwhelmed, but grateful. Exhausted, but happy. Worried, but hopeful.
June 9, 2024: It's Surgery Eve
I'm sure I don't need to tell you that I'm feeling a major mix of emotions right now as I count down the hours to surgery. I'm thrilled this cancer will be out of me soon. But I'm also very nervous, both for the actual surgery itself but also for what it might reveal. At this point, we think the cancer is small and hasn't spread beyond the breast tissue, but the surgery and the sentinel node biopsy could uncover something worse.
I think I've taken care of everything we'll need in the days following surgery. Huge thanks to friends who are bringing us meals and driving Trevor where he needs to go. (Speaking of which, the first behind-the-wheel test he could get after turning 18 is in early July.) Trevor is currently at Disneyland with his classmates for Grad Nite. I can't wait to hear all about it!
After dinner, I will begin surgical prep - showering and using the chlorhexidine gluconate wipes that will kill germs, then try to get to sleep early. My day-of prep starts at 4:15 am and we need to arrive at the hospital at 6:20. The whole morning is packed with appointments, including the blue dye injection, a skin marker, and a bunch of other new-to-me stuff. Surgery is around noon. No word on how long it will last, but I can expect to be out of recovery and released in the late afternoon. I am hoping Steve will be able to post a quick message letting you all know I'm ok.
I really appreciate all of you who have sent kind words, cards, and even gifts. And right now, I am especially thankful for the comforting Bible verses you've sent. Keep them coming! Please know that I'm doing my best to respond to all the messages I've been getting. If I miss replying, I am sorry.
Mood: Emotional, but ready and feeling all the love and support you've been sending.
June 10, 2024: Lumpectomy
She woke up at 4:15 this morning to chug the Gatorade-like drink she was supposed to drink. And went back to bed. We then got up and left the house before 6 AM, and arrived at the Surgery Center by her 6:30 appointment. She filled out a quiz, answered some questions by the check-in clerk, and then by 7 AM was whisked off to the room to be “prepped.” For now I’m sitting in the surgery waiting room. We were told that it should be about an hour and then I’d get to go back with her.
One interesting thing is I was given a card with her “case #” and a list of stages, color coded, that she’ll go through. There’s a monitor on the wall that lists the cases, with the stages (color coded the same), so I can track her progress.
I’ll post more updates as anything interesting happens. For now we wait.
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Prior to being allowed back, I got a phone call from her surgeon letting me know that the “surgery went great.” So, I’m hopeful we’ll be heading home soon.
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June 11, 2024: Post Op Day 1
Emotionally, I am as happy as it gets. The malignant mass is out of my body and I am hopeful that the margins are clear. The surgeon said the margins looked good visually, but of course they need to go to pathology. Same with lymph nodes. The scars look hideous (they’re closed with superglue, so there’s no dressing over them) but seeing them actually makes me happy. They’re a lot bigger than I expected, especially the lymph node one, but whatever it takes to get rid of the cancer is fine with me. Bigger scars mean more potentially bad cells out.
Steve has been the best caregiver I could hope for. He is anticipating my needs, keeping track of my complicated medicine schedule, and checking on me just the right amount. I had some difficult times yesterday, but seeing him in between procedures and while I was waiting made everything easier.
I loved spending time with Trevor last night and hearing all about his Disneyland Grad Nite trip. He got home yesterday morning while I was being prepped for ultrasound and texted me that he’d had a great time. Then he went to sleep. He was still sleeping when we got home after my surgery, woke up to say hi and see how I was, then went right back to sleep until dinner. He had a busy 36 hour trip!
Speaking of dinner, huge thanks to Scout friends Bobby and Logan who not only brought us dinner, but another huge bouquet of beautiful flowers, the most delicious strawberries from their garden, and homemade chocolate chip cookies.
Thank you as well to my sister-in-law, Lisa, who sent me a huge care package. We got home from the hospital, said hi to Trevor, and as soon as Steve got me settled on the couch with ice packs in place, a delivery showed up. The timing couldn’t have been better! Opening the box was like Christmas. It was exactly the mood booster I needed. It had a fuzzy blanket that I love, art supplies, a comfy sleep mask, an adorable koala squeeze toy that hasn’t left my side, and a bunch of self-care stuff. This, and the packages from Jonna, Nancy, Nikki, and Kathy have been the perfect hugs from afar. Thank you all so much.
I just read through all your messages here on CaringBridge and reread all the cards I have received. Your kind words of encouragement and support have made a world of difference. Cancer can feel isolating, but to have written proof that so many people care about me has been the best. I’m so grateful.
Huge thanks to everyone who sent me comforting Bible verses: Stu, Kim, Sharon, and Rebecca. I carried your verses with me into surgery and they were the last things in my head before the anesthesia kicked in. I felt God’s hand with me and it was the best feeling. I want to use your special Bible verses for an art project once I’m up and about.
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I want to document surgery day while it’s still relatively fresh in my mind, to supplement what Steve posted. I had my pre-surgical drink at 4:15 am, went back to bed, then got up in time to get to the hospital by 6:15. I had a $250 copay this time, bringing my out-of-pocket costs for cancer treatment so far to $580. Thank goodness for insurance. And thank goodness that $580 is not a burden for us. My heart breaks for those who face medical treatment they can’t afford.
After I was all checked in, they brought me to a roomette and put me into a toasty bed. I had the neatest space blanket thing on top of me, that would inflate with warm (or cold, as desired) air and float lightly on my skin. It was awesome. Then my IV went in. It was NOT awesome. I’ve had IVs before and this was the worst by far. It hurt continuously (2) from the time it was until in the time it came out, then it would jump briefly to a 6-7 whenever they put something in the IV before settling back to a 2. They put the oximeter on my ring finger and the heart monitor sticker things all over. Then I transferred to a wheelchair to go to Nuclear Medicine.
There, I was injected with a radioactive dye at an extremely shallow angle in the areola. No painkiller. The needle itself hurt like crazy, but 5 seconds later when the dye began to sting was truly awful. It only hurt for 2 minutes, then I never felt it again. Then back to my roomette. An anesthesia doctor came to meet with me and go over my entire medical history (back to childhood stuff). When she heard I had vomiting after my teenage wisdom teeth removal and severe itching after my C-section, she said she’d order medications to prevent both of those this time. It worked - no nausea and no itching!
Then Steve was finally allowed to come stay with me, which was wonderful. He was very impressed with my puffy heated blanket. We had about an hour together before I was back in the wheelchair and off to ultrasound. I want to give a shoutout to Darryl and Keisha, the two people who wheeled me back and forth to these appointments. Darryl is a big guy and it’s a good thing. I asked him how much walking he logs each day and how much weight he has to push. He averages 4 miles and his largest patient (before accounting for the gurney) weighed 535 pounds. Keisha was petite. She said she does absolutely no exercise outside of work because pushing everybody around keeps her fit. All the doctors and nurses and technicians I met were absolutely wonderful, but no one really thinks about the people pushing wheelchairs and gurneys all day long. Both were so friendly and helpful. Unsung heroes.
Next was ultrasound. They were backed up, so I spent a lot time in the hallway. This is when Trevor texted. I also had a nice long conversation with Christy, an ultrasound tech. I went in for the ultrasound and met Dr. Rad. That’s his actual name. Dr. Rad is a radiology doctor. Destiny! He did some screen captures to get the mass perfectly centered (I later saw the picture on the screen in the OR) and used a pen on me to mark exactly where the mass was. He did a lot of drawing. Then Darryl came and got me and I was back to Steve and my roomette.
My primary nurse had gone on break while I was gone. When the new nurse came in to check on me, she saw Steve waiting there and thought he was the patient and asked him to follow her to be weighed. This happened two more times with two more nurses before I returned (I was gone an hour)!
Shortly after I got back around 11:00 am, there was an overhead announcement about a trauma arrival and an order for the head and neck surgeon to come stat. Car accident? Swimming/diving accident, on a warm summer day just after school got out? Prayers for the victim.
Steve left briefly to get a tetanus shot (required for his and Trevor’s June 20-30 trip to Minnesota to canoe Boundary Waters with the Scouts (Northern Tier High Adventure) while the nurse was occupying me. While he was gone, my surgeon (Dr. Isaccson) came by to say hi and check on me. I really, really like him. Both at pre-op and during this stop in, he had all the time in the world to talk with me. Before leaving, he took out a marker and signed my right shoulder. At this point, the entire right side of my torso was covered in pen marks: signatures, arrows, and circles. There was no way they’d accidentally operate on the wrong side!
Steve came back, tetanus-protected, and was with me until it was time to go into surgery. The operating room was enormous and as brightly lit as I’ve ever seen. This is when I got really scared. I said my Bible verses as I thought of my family annd friends and that helped a lot. There were 7 (?) people on my team, my ultrasound was up on a big screen, and all my details were written out on a big board. My surgeon read my information aloud to the assembled group, then said his name, position, and plans for surgery. One by one, each went around the room and said their names, positions, and plans for surgery, followed by a question if there were any inconsistencies or concerns. They put a mask on me and asked if it was comfortable (not especially, because I was exhaling on my own eyeball through a gap at the top). That’s the last thing I remember before waking up.
I’m hazy on the next hour or so. I remember Steve and my nurse, plus my surgeon stopping by to give me a high five. I remember the horrible IV coming out. I remember Steve being sent to the pharmacy to get my meds (3 painkillers - 5 days, 10 days, and 30 days worth, I believe). I didn’t think to ask about the copays. I need to add that to my running total.
When it was time to go, I transferred to the wheelchair while Steve went to get the car. We stopped at the bathroom, where I got to see the predicted blue urine for the first time. It looked like Windex. Then I got loaded into the car. The hospital gave me two heart-shaped seatbelt pillows, provided by the local chapter of Bosom Buddies, that (along with ice packs and meds) kept me comfortable on the drive home.
June 12, 2024: Post Op Day 2
My surgeon called to check on me yesterday afternoon and asked what I remembered from our conversation in recovery. Since I didn’t even remember seeing him in recovery (just the high five as I was being wheeled out to the car), he filled me in. Most of it I’d read in the surgical report on the website, but it was nice to hear it from him directly. He said the margins visually looked great, as did the sentinel node. He is not sure how many nodes came out. He felt one, but said there could have been a few more small ones. We’ll know when pathology comes back in 5-7 days. There was nothing unexpected hiding behind the tumor. Because of its position, he took out tissue all the way back to the chest wall. He is extremely happy with how surgery went.
Around 8:00 pm, my nurse called. She wanted a rundown of all my symptoms. She was pleased with everything I told her and granted me permission to shower in the morning, which I just did. I’ve had a surgical bra on ever since recovery (I woke up with it on), so it was interesting to take it off and really see the extent of the surgery. The bruising is impressive. I had Steve measure my scars. The one on my breast is 2.5 inches long, positioned like the hand of a clock. The other is vertical, 1.5 inches, halfway between the breast and the armpit. Biopsy #2 still isn’t fully healed, but it’s just a tiny (1/4”?) clean slice, like a paper cut. There is no pain right now; the meds are doing their job.
My breast cancer journey has been exactly that: MY breast cancer journey. I’m learning that everyone’s experience is completely different. There are as many different combinations of surgery outcomes, recoveries, and treatments as there are patients. Huge thanks to SJ, RF, and SB who told me the details of their experiences with breast cancer. Their stories differ significantly from each other’s and mine is different as well, but hearing them was so valuable to me in many ways.
I’ve had a lot of questions about what comes next. I’m going to spend the rest of the week mostly resting and recovering. I’m to take short walks as I’m able (last night, Steve took me on a walk around our court and to the mailbox), but otherwise I should be mostly resting. No lifting, no repetitive motions, no driving, no raising my right arm, and no exerting. Oh, and no sweating! That’s a weird one. Since no deodorant is also a rule, I suppose it’s good that sweating is forbidden. I’m limiting talking due to my sore throat and cough. I had the breathing tube in for 2 hours and my throat is a mess. I can’t imagine those poor COVID patients who spent weeks on a ventilator.
I see the surgeon for my post op check on June 25. By then, he’ll know if the margins are clear and the lymph nodes are benign. If no, I go back for a second surgery and the recovery time clock starts again. If yes, I get an appointment with the oncologist to find out my course of treatment. The surgeon says it’s almost certain that I’ll have radiation (5 times a week in Vacaville, 3-6 weeks) and hormone therapy (pills, taken for 5-7 years), but I may or may not have chemo.
Our extended family is taking a trip to Europe to celebrate Trevor’s graduation starting on July 12. There is still a chance I can go, depending on the news we get regarding the margins and what timeline the oncologist sets. If I can’t go, Steve will stay home with me. We’ve decided that Trevor will go with my parents and sister’s family regardless of whether or not I’m able to travel, rather than canceling the trip entirely. If I do get to go, I will need to modify my planned activities quite a bit - bus tours instead of walking / hiking tours, nothing too active, fewer activities with long rest periods, that sort of thing. In other words, the exact opposite of how I normally travel. I don’t mind. I just really want to be able to go so I can see my family, celebrate Trevor, and visit countries I’ve always wanted to see.
A friend commented on Facebook that I am brave for sharing my breast cancer story like this. While I appreciate the sentiment, I don’t think sharing my story is brave. A person who is brave is risking something, whether it’s their life, their safety, their job, their reputation, or something else. I’m not risking any of those. I can’t think of a single negative thing that could happen to me by being open about my experience. I’m giving up some privacy, but that’s not bravery, it’s just a choice. I don’t care who knows how long my scars are or what my recovery timeline is. Feel free to compliment me about being open if you want, but not about being brave.
I hope that by writing such detailed posts, I can accomplish multiple goals: 1) to have a detailed record of my experience that I can look back on five years from now when I’m healthy and officially declared cancer-free; 2) that I can encourage everyone to get their regularly scheduled mammograms on time - mine literally saved my life; 3) that I have all the details of my journey written down to share with anyone who faces a breast cancer journey of their own in the future and wants information; 4) to remember what I needed and appreciated most during my post-op recovery, so as to better support friends who go through any surgery; 5) to avoid having to talk on the phone and tell multiple people the details. I’m not much of a phone person in the best of circumstances, and with this sore throat, I’m not a talking person right now. Writing has always been my favorite form of expression and the one that comes most naturally.
June 13, 2024: Post Op Day 3
Getting a cancer diagnosis felt like being yanked from my home unexpectedly and thrown, alone, into a deep, dark, unfamiliar, scary basement. I landed safely, but there was no way to get out and I didn’t understand why this had happened to me. When I called out to my loved ones, I could hear their voices, full of comfort and encouragement, but also fear. They wanted to help, but there was nothing they could do. It was terrifying as I thought of the danger that was surely all around me.
Over time, my eyes adjusted and I could see that my surroundings were safe. I was still alone in the basement, but I felt hope. So many people were trying to rescue me. Each test result that came back was a rung on the ladder out of that basement. Each bit of news encouraged me and helped me see that my time in the basement is temporary.
My surgeon called last night with the most wonderful news: pathology came back much quicker than expected. My margins are clear and the lymph nodes are negative. It’s official: Stage 1. There will not be a second surgery. I’m another rung closer to leaving the basement of cancer forever. Now we wait for my oncotype score, then I will see an oncologist to learn about next steps.
I have been so lucky. Everything has gone as well as I could have hoped. Never once has a rung been removed from my ladder. I haven’t had to experience stepping back down toward the basement like so many others have. I wouldn’t wish a breast cancer journey on anyone, but if you have to have one, mine has been about as good as it gets.
Your messages, cards, and gifts continue to brighten my days. Huge thanks to my cousin Tim and his wife Ginger, who sent me an adorable trio of flowering plants in the cutest little ice cream cone pots. My sister sent me a cookie bouquet poking fun at my hatred of eels. It makes me laugh each time I see it. I had a short visit with Pastor Karen, which was wonderful.
Steve and Trevor had Scouts last night, so my friend Courteney came to stay with me. It was wonderful to spend time with her, and just the distraction I needed. I overdid it on talking, as I have literally no voice this morning, but it was so worth it. She brought me a bag full of goodies, including my first pink ribbon items, and a gift card so I can treat myself. But the last item I pulled from the bag brought me to tears. It is a wooden sign featuring my favorite Bible verse: “I can do all things through Christ who strengthens me.” Philippians 4:13. It was exactly what I needed and among the most thoughtful gifts I have ever received.
June 14, 2024: Post Op Day 4
Encouraged by my recovery progress, I had Trevor take me on a quick drive to the library and grocery store this afternoon. All I did was walk back and forth to the car while Trevor carried everything. Getting out was nice, but even that short outing was a lot for me. I’m back on the couch for the rest of the day. I will build stamina slowly. As for the car ride, the Bosom Buddies pillows helped, but I wouldn’t want to wear a seatbelt for more than a 10 minute drive right now.
A friend who is about 6 weeks ahead of me in her breast cancer journey invited me to an online support group today and I love it. It will be very helpful as I enter the next phase of treatment, whatever that will be. It’s also a good place to ask weird questions. For example, I’ve noticed that my sense of smell is much better than usual. The only other time I’ve had hyperosmia was when I was pregnant, which is super common. The research on breast cancer and heightened smell is interesting, but it’s equally interesting to hear anecdotally from other breast cancer patients. It’s also exciting to celebrate others’ good oncotype scores as I wait for mine.
June 16, 2024: Post Op Day 6
Steve and Trevor leave in 6 days for their canoe trip. I am excited for them and confident that I will do well while they are gone. So many of you have reached out to say that you’re happy to help me with whatever I need then. I appreciate it so much. I will definitely ask for any help that I need.
Today I want to talk about someone besides myself. Steve has taken on the job of being my caregiver through all this and I couldn’t be more grateful to have such an attentive, protective, and loving husband by my side. My medications magically appear at just the right time. Fresh ice packs are placed gently on me exactly when I need them, including throughout the night. He calms my fears, cheers my progress, and is doing all my chores on top of his own (while rushing against a tight work deadline). I am so grateful.
I have a new appreciation for all the caregivers out there. My cancer experience has taught me not only how better to help those who will be fighting breast cancer in the future, but also given me a glimpse into what their caregivers may need (a break, chores off their plate, appreciation, and someone to talk with about their own thoughts and fears). I like to find the silver lining in tough situations, and finally realizing the burden caregivers face is one of them.
Happy Father’s Day to all of the dads, godfathers, and father figures out there, especially my own dad. Thank you for 52 years of love and support. Happy Father’s Day to Steve. Parenting isn’t always easy, but I’m so glad you’ve been my partner through it all. I’d give you a French medal if I could. And love to those who have lost their beloved fathers. I’m sure this day is hard. I’m thinking of you.
June 25, 2024: Post-Op Appointment
Today I met with my surgeon for the post-op. I’m thrilled to report that it was all good news! My incisions are healing perfectly, with no sign of infection. There is no evidence of lymphedema. I have clearance to start all the PT exercises I learned from the class ahead of surgery. The left knee pain I’ve been experiencing is not unexpected (due to the extra stress I’ve been putting my left to compensate for the right surgical side).
My surgeon says I can resume non-strenuous activities. (“Now is not the time to take up rodeo, but feel free to resume other things.”) I no longer have to avoid sweating, as long as I shower soon afterward. However, I can’t wear deodorant on the right for two more weeks. I am allowed to shave my legs now, and even my armpits. (“I mean, not aggressively or anything. Use some caution and try not to bleed.”)
As far as the surgeon is concerned, I can go to Europe in July. He is fine with the long-haul flights. (“Wear compression socks, take an aspirin, and get up and walk occasionally.”) He says I can do most activities while I’m there, building up stamina gradually. (“Most things are fine. Don’t do any hang gliding… or boxing. Avoid street brawls.”)
While I am thrilled to have the surgeon’s blessing to travel, it’s still up in the air until I see the oncologist. I am supposed to hear from oncology in a day or two to set up an appointment. I’ll learn about the treatment plan then, as well as the possibility of delaying/interrupting it so that I can go on the trip. My surgeon feels that, based on my oncotype score of 16, I will probably not have chemo and can probably delay radiation by a few weeks. (An oncotype is a recurrence score between 0-100 that helps determine whether chemo is beneficial. If the RS is over 25, you almost certainly will have chemo. From 16-24, it depends mostly on age, with chemo more likely for women 50 and under. 0-15 basically means the benefits of chemo don’t outweigh the costs.) Since I’m 52 and right on the border between low and moderate risk of recurrence, the surgeon says he expects radiation but not chemo, plus the 5-7 years of hormone therapy. I hope the oncologist says the same!
June 26, 2024: Oncology Navigation
As predicted, yesterday's post-op appointment kicked things back into high gear. First thing this morning, I was assigned an oncologist and got a call from the oncology scheduler. She set me up with two appointments today, then another appointment next week. The first appointment, with the Oncology Navigation nurse, was 30 minutes after I got off the phone. That appointment required bloodwork, so off to the lab. I got a fantastic phlebotomist, thank goodness, so it wasn't awful.
There was a $10 copay for my bloodwork. Along with the discharge medications I didn't record previously ($20.87), my total cancer out-of-pocket so far is $610.87. Part of one of my appointments today was about non-medical needs, including financial. Fortunately, I was able to tell the nurse that I don't need financial assistance, mobility assistance, transportation, childcare, translation services, emotional support, or counseling. I am so grateful that I don't have any of those concerns and very glad to hear that Kaiser is prepared to help people who do have those issues.
My complete surgical pathology report came in today. There were some surprises. Not necessarily bad news, per se, but worse than the biopsy pathology and initial surgical pathology had indicated. The tumor was 17 mm. While all the margins are negative for carcinoma, one margin shows atypical lobular hyperplasia (ALH). The grade is 2 (intermediate), so the cells are faster growing than I'd initially understood. They identified ductal carcinoma in situ (DCIS) as well as lobular carcinoma in situ (LCIS). LCIS is not cancer itself but indicates an increased risk for breast cancer... which is moot since I have breast cancer.
Speaking of which, you may notice that I say I "have" breast cancer. I recently learned this is a divisive subject. Some patients feel that once the tumor is removed and the margins are clear, it's time to start using the past tense - "had" cancer. Others, including me, feel that we "have" cancer until the treatments are complete. From my point of view, if I didn't have cancer anymore, I wouldn't be assigned an oncologist or have appointments to plan cancer treatment. I get why people would want to start using "had," but that's definitely not for me.
This afternoon's appointment was the most exciting, as I officially got permission from the oncologist to delay radiation by three weeks in order to travel to Europe! Obviously, I wouldn't delay it if there were any risks in doing so, but my oncologist feels it is safe to do so. Hurray!
July 3, 2024: Day 1 of a 10-Year Relationship with My Oncologist
Dr. Mahaldar went over my medical history and the cancer treatments and tests I've had so far. Based on my oncotype of 16, there is little to no benefit to having chemo. Instead, as expected, I will have radiation, followed by hormone therapy.
Before our Europe trip (we leave in 9 days), I will need to meet with Radiation in order to begin treatment right when I return. Radiation is out-sourced, so Kaiser is sending the referral to North Bay and then it's up to me to contact them. I was surprised to learn that Dr. Mahaldar is not the one who decides how many radiation sessions I will receive. She is guessing 15 sessions (3 weeks, 5 days a week), but that is only a guess. It could be more or it could be fewer. I was expecting 20-30 sessions, so it will be a nice surprise if it is fewer than that.
After I complete radiation in August/September, I can have a week off before starting tamoxifen. It is a daily pill that functions as a SERM (selective estrogen receptor modulator). In other words, it blocks the effects of estrogen. There are some obnoxious side effects, as well as some increased risks, but obviously it's worth it to prevent a recurrence. She said to expect 2-3 months before my body adjusts to tamoxifen. I will meet with Dr. Mahaldar in four months, then every six months after that for the 10 years (!) that I'll be taking it. There is a chance the medication may switch to something else over the course of the decade (!). I will have yearly mammograms and other tests.
With the radiation and 10 years (!) of tamoxifen, my risk of recurrence is 4%. I can live with that. Of course, there is no guarantee that a new cancer won't appear. Fortunately, with such frequent checks, anything that does show up will probably be caught relatively early. That's the hope, anyway.
There was a $30 copay today, bringing my out-of-pocket cancer costs to $640.87.
July 11, 2024: Radiation Plan in Place
Side effects will kick in by the 5th treatment and will last for a month or longer after treatment is complete. The skin will basically be sunburned, there will be swelling (which can cause sharp, shooting pain), and I will be fatigued. I have a skin care regimen to follow to lessen the topical discomfort and help with healing. I can’t use deodorant or shave the armpit on the treatment side, can’t swim or use hot tubs, and can’t apply heat or cold packs to the treated area. Clothing needs to be loose. I should minimize sweating and avoid sunburn.
Part of today’s appointment was a CT. I will be on my back for treatment, with my arms over my head. It is important that I am in the exact same position every time, so there is now a Cindy-shaped mold of my back that will be used to ensure I’m lined up right for treatments. I’d heard a little about this ahead of time and was expecting some sort of memory foam situation, but it was more like a rigid sheet of plastic that got sucked up around me. It reminded me of the show How It’s Made. Except, presumably, they won’t be injecting liquid plastic or adding layers of resin and fiberglass inside the Cindy mold.
We leave for Europe tomorrow. We will be meeting my parents, sister, brother-in-law, nephew, and niece in Amsterdam. We spent 3 nights there, 3 nights in Belgium (with a daylong visit to Luxembourg, and then head to the UK. My brother-in-law and nephew fly home to return to work while the rest of us board a Baltic cruise, with stops in Denmark, Germany, Sweden, Estonia, Finland, and Norway. That’s nine new-to-us countries. I am thrilled that I get to take the trip.
August 4, 2024: Home from Europe!
We’re home from three weeks in Europe with my parents, sister, brother-in-law, nephew, and niece. We had a wonderful time! I’m so thankful that I was able to safely delay treatment and make this trip. You can read about our European adventures starting here.
Radiation starts tomorrow morning and continues for the next 14 weekdays after that. I meet with my radiation oncologist every Wednesday. Today, along with the usual post-travel chores, I have been hydrating and moisturizing as much as possible. Both can help minimize symptoms of radiation dermatitis (known as radiation burn, but not technically a burn) and reduce the severity of itching, swelling, blisters, and peeling.
While I'm not thrilled to have to deal with radiation, I am grateful that it will be brief. Three weeks of treatments will be over before I know it, and the side effects shouldn't last too much longer after that.
August 5, 2024: Radiation #1 of 15
First, they did x-rays. Then, the radiation. It was painless, other than my shoulder. I lost some range of motion in my right arm following surgery and I definitely felt it during treatment. My doctor gave me a pre-emptive referral for PT, as shoulder stiffness is extremely common following sentinel node surgery. So I'll be following up with that.
They were playing 80's music at a decent volume during treatment, which I enjoyed. I wonder if everyone gets 80's music... or just those of us in our 50's? The technicians were a generation younger than me, so I'm guessing the genre wouldn't have been their first choice, but maybe I'm wrong. Everyone loves the 80's, right?!
I was at the treatment center for 25 minutes total, much less than the time to drive there and back. Future treatments will be shorter since they won't need to do the x-rays. Side effects are supposed to kick in later this week, though I am to continue to moisturize and hydrate as much as possible in hopes of minimizing the skin damage. Loose clothing, no deodorant, and minimal sweating for the next 3+ weeks.
One down, fourteen to go!
August 7, 2024: Radiation #3 of 15
Day 3 of radiation treatments. So far, it's been fine. The procedure is painless. Staying still continues to be the most difficult part. The treated area is quite red and a little swollen, but not painful so far. I am hydrating and moisturizing frequently, as directed. I met with the radiation oncologist today and she recommended adding cold compresses and to keep a close eye on the skin under my breast.
I realized today that I have never mentioned zingers. I had one today, the first in awhile. A zinger is a brief electric shock sensation that happens where there has been nerve damage. I had them fairly frequently in the weeks after the lumpectomy. They're super common and nothing to be concerned about. Just another weird thing breast cancer patients deal with.
Three down, twelve to go!
August 13, 2024: Radiation #7 of 15
After treatment, I get back into my street clothes, then head back home. It's about an hour round-trip. Back home, I apply a generous layer of calendula to the treated area. I apply a second coat before bed. I have to carefully wash it off the next morning. I can't have lotions, deodorant or anything else on my skin when I'm treated.
The treatment I am receiving, external beam radiation therapy, works by making small breaks in the DNA of cells in the targeted area as they are dividing. Since cancer cells divide more often, they are more vulnerable to these breaks. Breaks in DNA prevent the cells from growing and dividing, so they die. The goal, of course, is not to kill the rest of me along with the cancer, which is why doses are given for five days at a time, followed by two-day breaks, instead of as one giant zap. The gaps give non-cancerous cells a chance to heal. You can only have a certain amount of radiation in a particular area in your lifetime, so the radiation oncologist prescribes the smallest amount that they are confident will kill any rogue cancer cells.
So far, I've had minor redness, swelling, and sensitivity in the treatment area - no worse than a sunburn. I'm a bit more tired than usual, but nothing major. Effects are cumulative though, so odds are that side effects will get worse before they get better. Hopefully not, but I'm prepared if that's the case.
Seven down, eight to go!
August 16, 2024: Radiation #10 of 15
I continue to find a lot of help and comfort with my online support group. I check in daily and appreciate the collective wisdom and experience. I am also making friends with the women who have radiation appointments before and after me. I cherish the few minutes we get to chat each weekday. And, of course, I appreciate all of your support. It means the world to me to have so many people in my corner.
I've been struggling recently with complex feelings that, I'm guessing, many people experience while battling cancer. To simplify: I'm mad that I have cancer and have to deal with this... but I'm incredibly grateful that my cancer is not as bad as "everyone" else's and that I have insurance, food and shelter, a support system, etc. that not everyone has. Which makes me feel guilty. Why am I the lucky one? Then I realize the lucky ones are the people without cancer, and the cycle repeats. Most of the time I'm counting my blessings, but once in a while it's hard to do.
A lot of people have been asking me if I'm done once radiation ends. That question brings up a lot of emotions as well. No, I'm not done. After this, I have 10 years of hormone therapy. The first few months could be rough (or maybe not) as my body adjusts. I will have frequent appointments and scans during those ten years to make sure the cancer hasn't returned. For the rest of my life, I am to watch any new symptom, literally anywhere in my body (even as minor as a sore pinky finger), for four weeks before reporting it as a possible new location for cancer. That will never end.
Some people have asked whether I'm cancer-free now. I don't think medical professionals use that term in regards to breast cancer. There's no way of knowing for sure that there aren't cancerous cells too small to detect. Instead, they use NED (no evidence of disease) as the goal. ("We THINK you don't have cancer because we can't find any.") My treatment is to reduce the chance to recurrence. I'm at the highest risk of recurrence for the next 5 years, but it never goes to zero.
Enjoy the weekend, everyone! I definitely will. And thanks again for all your support. Feel free to ask me any questions you have. I'm an open book.
Ten down, five to go!
August 21, 2024: Radiation #13 of 15
So far, I only have swelling, redness, minor pain, and fatigue as a result of radiation. Dr. Tran says to expect side effects to continue, and probably worsen, within the next two weeks. It should take about a month for side effects to go away, although it is normal for treated skin to remain thickened or darker for much longer.
I need to wait at least two weeks, possibly three, before starting on tamoxifen. That way we can tell whether the side effects are from radiation or from the drug. Tamoxifen is a hormone blocker. Since my tumor was positive for estrogen, this daily pill will stop the hormone that feeds the cancer cells. Tamoxifen has a bunch of side effects, most (but not all) related to exactly what you’d expect if you blocked estrogen. It also has some scary risks, but at this point, the benefits outweigh them. I’m not at all happy about starting a medication that I will be on for 10 years, but it is what it is.
Thirteen down, two to go!
August 23, 2024: Radiation is DONE!
I will have one follow-up telephone appointment with radiation in three weeks. By that point, I should be feeling better. Right now, areas of my skin are now raw and painful, as expected, and there is swelling. Unpleasant, but all perfectly normal. I am quite fatigued and strongly considering a nap after I finish this update.
The plan is to start tamoxifen in 3 weeks; however, the migraine medication I’m currently on inhibits tamoxifen, so I have to wean off of it. If migraines (and the resulting blindness and panic attacks) return, I’ll have to start a new medication. But my doctor and I are hoping I will do ok without. We’ll see.
I got a bill in the mail for bloodwork I did in early July; why they didn’t ask for a copay then, I’m not sure. Anyway, that’s $20. Adding in the calendula cream I’ve needed during radiation ($12.40), that brings my out-of-pocket cancer costs to $673.27. Considering the radiation alone cost about $10,000 and surgery at least that… thank goodness for medical insurance!
August 31, 2024: Life After Radiation
It’s now been 8 days since my last radiation treatment. As expected, my radiation-damaged skin got worse in the days after the final treatment. The patches of raw skin and open sores hurt - sometimes a little, sometimes a lot. Calendula helps, as does the Advil I take for swelling. Icing the area provides the best relief.
I’ve been trying to describe how my skin feels and I’ve settled on describing it thus: Imagine you got a bright red sunburn on your chest. Instead of leaving it alone, you scraped a fork across the burned area a couple of times. But then imagine that somehow the fork scraped the internal layers of skin as well, instead of just the surface. That’s basically how it feels.
Needless to say, wearing a seatbelt hurts, especially on the driver’s side. The passenger side is better. Thank goodness for my heart-shaped pillows. I didn’t expect to need them after recovering from surgery, but they’re a must-have now. And speaking of recovering from surgery, the incisions that looked pretty good a few weeks ago are very angry and red now. They hurt, plus they itch like crazy.
Fatigue is an issue. I can handle one activity a day, but more than that takes a lot out of me. I’m resting often. I’m not sleeping as well at night as before. I go to sleep with an ice pack pressed against me, but once it melts and I shift the slightest bit, I wake up in pain.
There have been multiple times over the past 5 or 6 days where I thought I was improving, only to have the pain return. But I’m definitely not getting worse, so I’m glad for that. I expect to see (and more importantly, feel) significant improvements over this upcoming week.
I’m tapering off my migraine medication and so far, so good. I am optimistic that it will be fine and I’ll be able to start tamoxifen in two more weeks. Thanks, as always, for your prayers, well-wishes, and kind words.
September 10, 2024: Preparing for Tamoxifen
It's been 18 days since my last radiation treatment and I'm happy to report that I'm almost as good as new. By Day 11 post-radiation, my raw and painful skin started getting much better. It stopped hurting, but started peeling and itching like crazy. My energy level gradually improved and I started feeling like myself again. Now, the peeling and itching are 98% gone, there is no more swelling, and no fatigue. The skin is still discolored and oddly thick, but otherwise fine. I have a follow-up appointment with Radiation in two days.
I've been tapering off my migraine medicine without incident, so I will start tamoxifen in the next week or two.
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