First, a big apology for the HUGE gap in time from the last update, which was over 2.5 years ago (yikes!). I cannot believe how quickly the time has passed. I was not purposely avoiding this blog, but subconsciously…I was probably avoiding this blog 😊. Well, maybe not the blog itself, but just thinking about the big C.
After going through everything, I kept coming across a buzzword in the cancer world – “thriver”. Patients used to be labeled as “survivors”, but I guess that didn’t quite have the right ring to it. After all, surviving doesn’t necessarily mean a person is truly living. So, I started to reflect a bit on that….
As I am writing this, I am a little over 3.5 years out from my breast cancer diagnosis. I am feeling great, and everything looks good on the cancer front, which is fantastic! My mild neuropathy went away, my heart has been pretty normal, and I am back to all of my usual activities. Yay!!
At the same time, I created this blog to describe my authentic experience, so I don’t want to sugarcoat anything. In the time since my last post, I have had 1 new breast surgery, 5 MRIs, at least 2 ultrasounds, and countless blood tests. After each test, I hold my breath and pray. Does that mean I am only surviving…or am I thriving? I honestly don’t know. Maybe it’s both. Some days, I am living my best life and am definitely thriving. I am grateful (beyond grateful) for the fact that I just had my 43rd birthday, and most days, life feels pretty much back to normal. It is only when I have a weird symptom, get my Signatera test, or have my cancer markers tested that my mind gets a little wonky. To me, thriving is mostly about having the right mindset, and if there is one thing a cancer diagnosis can do, it’s mess with your head!
Headache – could it be cancer?
Stomach pain – could it be cancer?
Limping because your hip hurts – could it be cancer?
And so on…
Before my diagnosis, I would have ignored most of those symptoms without a second thought. Now though, my perspective has shifted. It takes a bit more self-reflection to ensure I am being responsibly cautious and not flat-out paranoid when I call the doctor. Although I will say that this seems to be getting better over time.
Also, for those who may be wondering whether the new breast surgery I mentioned above was for a recurrence or just cosmetic, it was actually neither. On an MRI, I had what looked like a 1.5 cm cyst in my left (previously cancer) faux-boob on top of my silicone implant. On ultrasound, it looked like a mass. My CA 27.29 was also above normal levels, so let’s just say I was not thriving during that whole evaluation process. They sent me for surgical removal in order to test it and it turned out to be an inclusion cyst (phew…and also…yuck!). You know life is strange when you are so relieved to have a cyst 🤦♀️.
In the end, I think this is just a long recovery process, both physically and mentally, and I think that’s okay. No matter where you are in this journey, you are surrounded by more love than you probably even understand – from your family, friends, and even from complete strangers who are thinking about you and praying for you. Strangers like me! I may not know who you are, but I am looking forward to the day when you are thriving (and also to when they cure cancer 😉).
“I pray from his glorious unlimited resources he will empower you with inner strength through his Spirit”. Ephesians 3:16
Disclaimer: I am not a physician and am simply sharing my story. Please consult your physician for any medical concerns or treatment decisions.
Giving up my boobs was harder than I had imagined. I feel guilty because I used to complain about them all the time. But once I found out that I had cancer and had to decide what kind of surgery I wanted, I just wanted to keep my boobs. I didn’t want any surgery…although of course that wasn’t really an option. So, like most patients, I had to decide between a lumpectomy with radiation, a single mastectomy or double mastectomy.
Decision Time: The lumpectomy, although awesome in theory, was not the right choice for me. I know survival isn’t really any different between a lumpectomy and mastectomy, but recurrence is more common with a lumpectomy than mastectomy. Also, you need to get radiation. Since my tumor was in my left breast and the heart leans left in our bodies, there is always the chance of radiation exposure to the heart. There are studies that show that this can cause heart disease (just look it up in PubMed or you can Google “radiation heart disease” to see the publications). I already had PVCs/PACs before chemo, then during chemo my heart was struggling (ventricular tachycardia and sinus tachycardia), and I had exposure to adriamycin (which can also damage the heart)…so I did not want any more cardiac risk factors. This left me deciding between a single or double mastectomy. I decided on a double (bye bye breasties) with reconstruction since I am relatively young and there is a lot of opportunity over the years to have a recurrence. I also decided with my breast surgeon to do a nipple-sparing mastectomy given that my tumor was far from my nipple in my left (cancer) breast and the right breast was pretty much prophylactic. Double mastectomies are interesting because they are so commonly done, that I think we underestimate them. They almost seem like minor surgery, but this recovery was way worse than my c-section. I wasn’t expecting that since they didn’t have to cut through any muscle, but it was an incredibly painful and long healing process. I hate pain meds too, so I only took Percocet for a couple of nights and then stopped. I used Advil as needed, but the doc made me wait a week before I could start using that. Most of the time, I just dealt with the pain.
Initial Surgery: The surgery itself was on June 14, 2021 (~4.5 weeks after my last chemo infusion) and was relatively uneventful. I went to the hospital and they were running ahead, so I actually went in early (11AM instead of 1PM). I was under anesthesia for about 5-6 hours in total and woke up NAUSEOUS, but not in too much pain. They gave me the nausea patch behind my ear before surgery (more on this later) and some other meds in a drip, but the nausea still didn’t subside until about 8PM. That is also when I started to feel more lucid. Before that I was mostly grunting and my husband said I cursed at him when he tried to talk to me – oops. I totally don’t even remember that. The pain was manageable and the docs kept asking if I wanted Percocet, but I said no initially. Then, in the middle of the night I gave in, took the Percocet and slept. One thing I will say is not to underestimate how hard it will be to move your arms and get out of bed without using your arms – even in the hospital bed. I did it, but wow did it take a minute. So, if you think you need to go to the bathroom, call the nurse early to give yourself some time. Also, keep an eye on the meds. On a bathroom trip I saw that my face was red and my hands were swollen. Eventually, I realized that the antibiotic hanging on the pole was in a class of meds I am allergic to, as was the script for meds they were sending me home with (ugh!).
Post-surgery issues: So, that beloved anti-nausea patch actually made my vision wonky for almost 1.5 weeks. Apparently, the vision side effect is normal per the anesthesiologist and my eye doctor, but the duration of the side effect was super abnormal. Luckily, it did eventually subside and my eyes are back to normal now. About 2 days after surgery, the cancer boob (left side) started to have a puss discharge from the nipple (yep – gross), and the nipple and some of the skin below it were almost black. Apparently, you have skin, then a fat layer and then breast tissue. However, I had lost so much weight during chemo that they said I had no fat layer, which made it a bit tricky to remove all the breast tissue and preserve the skin. In the end, I would rather they get as much breast tissue out as they could, even if I lost some skin. Although, I admit my boob legit looked like some kind of Frankenstein experiment. Ultimately, they had to deflate my boob and I had to apply Nitro BID to the area twice a day for 2 days. Then I applied silvadene cream to the area twice a day. I couldn’t believe it, but some of the skin actually came back to life. The nipple was looking better too – except for the puss. That just kept coming and it was gross. So, on June 30th, 2021, I actually had to go in for another surgery to clean the infection, remove some dead skin (although this was much less and was limited to a small area near my incision line) and remove the tissue expander. I almost broke down and cried when they told me I needed another surgery. I almost told them to just sew up the left side flat and forget this implant mess. My chest was in pain and felt tight all the time. I was miserable. The incision lines hurt and my mobility was so limited. But, I let them go in to remove the expander and clean the infection. I had originally thought I would need 2 surgeries: 1 for the mastectomy and tissue expander placement and 1 for the implant placement. The infection meant that I ultimately needed 4 surgeries. First surgery had the worst recovery and the last surgery had the easiest recovery. If you only end up needing 2 surgeries, the second one really healed up pretty fast. Within a couple days, I was feeling pretty good.
Recovery: So, as mentioned, this is quite a recovery. The first 3-4 weeks after the initial surgery were bad and I was actually kind of depressed about feeling so terrible and not being able to move very well, but then I turned a corner. The thing that helped the most was actually starting physical therapy. It was night and day. When I started, I gained 20 degrees mobility from the first Wednesday session to the next Monday session. I did those at-home exercises like it was my job and it made me feel so much better. I still had a lot of pain around the incision lines for a while and everything always felt tight from the expanders. This seems to be pretty common, unfortunately, but it is manageable
Size vs. Function: My plastic surgeon and I went back and forth on how big to go. Trying to figure this out is really annoying. I looked up so many blogs and forums to try to get to the right cc’s. I was a 34C before surgery and I wanted to be the same after…but cc’s and cup side aren’t the same since cup size can vary a lot. My doc was leaning towards making me bigger than I wanted, so we compromised in the middle (350 cc implant on the left and 320 cc right). I am glad we did because the cc’s I had originally said would have ended up too small, but what he had wanted would have been too big. Keep in mind that after surgery, your boobs look big and high. Then, they settle over the next few months as the swelling goes down, so they look quite a bit smaller. When it comes to boob size, you do you. If you want a mega pair, now is your chance – you definitely earned them with what you are going through. But, keep in mind, they are not real boobs. Someone I know went bigger than their OG boobs and now she is always uncomfortable when she sleeps. She used to like to sleep on her stomach, but now she said it feels like she is sleeping on cantaloupes. She is planning a reduction.
Silicone vs. Saline: I thought I was going to go with saline because I liked the idea that if one of them popped, the only thing leaking was saline. Then, I got the tissue expanders and did not like the feeling of saline. So, I wanted a gummy bear silicone implant. These are supposed to be the texture of a gummy bear so if the outer shell gets a tear, the silicone gel will not leak into your body. Word of warning here – not all gummy implants are created equal. Some are definitely not like gummy bears and are much more liquid-like. I had a serious conversation with my doctor and told him I wanted to know the brand(s) he was planning to use. They usually order a few options, so I researched each one ahead of time. I even watched YouTube videos of implants being cut in half to see if I was comfortable with the level of gumminess (yes, I am that crazy). In the end, I got Sientra Opus HSC+ round moderate implants and I really like the way they look and feel and dance lol. I am the same bra size as before. With that said, one word of warning on silicone – given the heart issues from chemo, I need to get echocardiograms every so often and no one warned me ahead of time that it would be harder to get a clear image with silicone implants. If I would have known this, I may have gotten saline instead.
Above vs. Below the Muscle: Another decision is whether you want the implants to go above or below the muscle. Again, everyone needs to pick what makes sense for them. I had my implants placed above the muscle, which is less common overall, and especially less common in people who are on the thin side. You are much more likely to see rippling, so plastic surgeons don’t like to take that chance. Their job, after all, is focused on making things look as beautiful as possible. But I was 39 and married at the time of my surgery – I didn’t need to impress anyone and the hubby is more of a leg guy anyway. I wanted the best function. Over the muscle means the surgeon doesn’t need to disturb your muscle (faster recovery) and it seems more natural to me – put the fake boob where the real boob used to be. Also, there is less risk your breathing will feel obstructed. I had read so many stories of women saying that implants made them feel like they couldn’t take a deep breath. It freaked me out. Also, I knew the doctor could just do some fat grafting magic to make the ripples go away if they really bothered me. I am now 5 months out from the final surgery and I do have some mild rippling, but when I put on a good (no underwire) bra, it pushes the silicone so that the ripples disappear. I can wear tank tops, bathing suits, etc., with no problem. I’m totally good with it and I wouldn’t change it. I still have the option for fat grafting, but right now, I am not interested in any more surgeries. I cringe just thinking about it.
As mentioned, I am writing this about 5 months out from my last surgery (8 months out from my first surgery) and my boobs feel/look good. I hate that eventually I will need to get these replaced and imagine at some point I will just have them removed for good, but for now, I like having them. There was a time I thought about going flat and I have a lot of respect for anyone who makes that decision, but I am ultimately glad I didn’t do that at this time. For me, I think it would have been a daily reminder that I am a cancer patient. I like being able to look in the mirror and feel almost like myself. With that said, some women may go flat and seeing that reminds them that they are a warrior who beat cancer. In the end, it is a very personal choice and any choice you make for yourself is the right choice.
Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand. Isaiah 41:10 NLT
Disclaimer: I am not a physician and am simply sharing my story. Please consult your physician for any medical concerns or treatment decisions.
Disclaimer: I am not a physician and am simply sharing my story. Please consult your physician for any medical concerns or treatment decisions.
There is no easy way to say this – chemotherapy sucks. It just does. Even your oncologist won’t tell you otherwise. Is it as bad as the 80s movies (like Dying Young – omg)? No. It isn’t like that. Nausea meds have luckily come a very long way. BUT it definitely makes you appreciate every day of your life where you were a functional person without even trying.
I had 8 rounds of chemotherapy (one round every 2 weeks – 4 rounds of adriamycin + cytoxan [AC] and 4 rounds of Taxol [T]). Let me just be real with you all – the first session of chemotherapy was by far the worst for me, mostly due to the unknown. Some people walk into chemo with a shaved head ready to #killcancer. I am not that person. I walked in to the cancer center terrified and clutching onto the long hair that I was determined to keep until it was pried away from me. I always considered myself a pretty chill, laid back person, but chemotherapy and a cancer diagnosis changed that up pretty quickly. The whole time, all I could think was that I was about to voluntarily allow someone to poison me. Your whole life everyone tells you to make healthy choices…then you get cancer and they tell you to inject some random witch’s brew into your new port and cross your fingers.
I had my first chemo session on Friday, February 5th, 2021, the same day that my port was placed. Unfortunately, this meant that I had a bunch of medications going through my body in addition to the chemo (e.g., the sedatives for the port placement, the pre-meds for chemo [nausea meds, dexamethasone, Benedryl], not to mention what was likely a ton of naturally created adrenaline). The docs told me generally people feel worse when they get the port the day they start chemo, but in the end, I would do it again just to get chemo started as soon as possible.
The first thing the oncology nurses (God bless them because they are amazing) let me know as I was getting settled was that post-COVID chemotherapy is a lot less “fun” than pre-COVID chemotherapy (although I still question the truth of whether chemo can ever be fun 🤔). Pre-COVID chemotherapy apparently consisted of a bunch of people sitting together, almost like a support group, with therapy dogs, catered food, magic shows, support people, and all kinds of other activities. Volunteer groups would visit with care packages. If you have ever read John Green’s The Fault in Our Stars, then these would have been some of the cancer perks. Post-COVID, no cancer perks…just cancer. I could not even take my husband with me for the first chemotherapy session. Patients weren’t able to comfort one another because we were in different rooms or separate curtained off areas. I get it – we are in a pandemic, but it was really hard to be scared, with someone you don’t know injecting you with toxic chemicals. Then, that person leaves you there…in your own area…alone…with nothing but a call button. I’m just saying – a support person would have been nice.
I received adriamycin first. Just so you are prepared, adriamycin is bright red (literally kool aid red) and nicknamed the “red devil”. When I saw it, all I could think about was how in nature, all of the scary, poisonous creatures are bright colors. The devil’s kool aid was what I was most worried about (they don’t call it red devil for nothing), but it actually went in fine. The nurse sat in front of me and pushed it in my line over what felt like 10-20 minutes. It was quick and uneventful. Then came cytoxan. I was so worried about adriamycin that once that was done, I thought I was good. I didn’t even worry about cytoxan…until I started getting dizzy and realized I couldn’t feel my lips…and then soon my tongue. I called for the nurse and, luckily, once she stopped the infusion, it didn’t get any worse. They gave me Benadryl and the infusion went on without any more issues (unless you count an uptick in anxiety). From that point on, I had to get Benadryl before every cytoxan drip and I needed a longer infusion time.
Since I went in for chemo on a Friday, Dr. Google said I would probably feel okay Friday and Saturday, with the bad symptoms starting Sunday into Monday. Well, mine did not quite go like that. I felt completely off and exhausted as soon as I got home on Friday. My body just felt weird and I was really weak. I tried to sleep, hoping it would help, but at 1:30AM I woke up shaking uncontrollably from what felt like chills, and my hands and lower arms were swollen. That was the first call (of many calls over the 8 cycles of chemo) to the on-call oncologist, who said it sounded like a continued allergic reaction, so I took some Benadryl (which became my standard routine moving forward). Then, I slept until 7AM and woke up still swollen, with a puffy face. Seriously?! With that, they actually had me go into the office on a Saturday to be seen. The doctor said that I was okay and it looked like continued allergy – so, more Benedryl. I went home, changed my shirt, and accidentally ripped the Neulasta patch off my arm. 🙄 I almost cried. So, on Sunday, I went back to the doctor to get the replacement shot. As a new patient, I was 100% sure the office was loving me already. I felt BAD on Sunday morning – weak, nauseous, exhausted. Also, it felt like my ears were under water or like when you have a cold and they are congested. I thought that might be the height of my symptoms, but boy was I wrong. Monday I woke up and could barely even walk. Think serious car wreck combined with the regular flu and a stomach virus. That’s how I felt. Ingestion of food and water was completely offensive to me. I hadn’t done a #2 (sorry TMI). My heart rate felt absolutely insane (~90-100 bpm at rest and ~130-140 ppm walking super slowly). I had to go to the cancer center to get fluids and was wheeled in there in a wheelchair. That was the first, but not last, time that I really felt like a cancer patient.
On Tuesday, it felt like my chest was on fire with a constant burning pain. Eventually, I needed to start a proton pump inhibitor (PPI) to control the heartburn. I couldn’t eat, drink or get comfortable. I couldn’t take a deep breath. I had bone pain from the Neulasta during the night in my hips and knees, but was able to fall back asleep. The next day, I noticed that my bedroom turned into a pharmacy with all the nausea meds, cream for my port, Claritin, Benadryl, Tums, Miralax, Colace, Senekot, Gaviscon, Tylenol, etc. By Wednesday, I started to feel a little bit better and each day it got a bit better from there. I generally felt I was at about 70-80% of my pre-chemo state the day before I had to go back to get the next infusion. In other words, unfortunately, I did not get much time where I felt good in between infusions. This seems to vary a lot from patient to patient and I think I was a bit on the worse end. I had a lot of side effects, but the heart rate issue was probably the most limiting. They had me wear a heart monitor and saw some pre-ventricular/atrial contractions, as well as sinus tachycardia…all uncomfortable, but considered pretty benign. I also had one episode of ventricular tachycardia – not benign and very dangerous. I had continued visits with a cardiologist and had 3 echocardiograms during the 16 weeks of chemo.
Most of the adriamycin and cytoxan rounds felt about the same, but it did seem to get a bit worse over time as my body was more and more battered after each round. Also, random weird things would pop up. Like all of a sudden, my ears would start ringing a lot for a cycle, or for my 2nd, 3rd and 4th cycles, my face was bright red for 2-3 days. I also had some minor neuropathy in my hands and feet on adriamycin and cytoxan, which is pretty uncommon. My blood pressure on the days after chemo, even when drinking a ton of water was low (lowest was 88/53). I never felt like eating or drinking but really tried to force it every day.
Many people say that Taxol is a lot better than AC, so I was just trying to hold out until I switched over. One friend who also had the same treatment (AC-T) told me that “Taxol was a breeze”. For real – direct quote there. Now, would I say it was better than AC? Definitely, yes. But a breeze? Nope. Just definitely no. Taxol caused these shooting pains all over my body, but I admit that cognitively I was much more present. I preferred that over the train wreck I felt like on AC, but it still hurt, I was still laid up in bed, and also, unfortunately, my heart rate issues did not improve at all. On the other hand, I felt pretty good Friday night and Saturday after my infusion, and I started to feel hungry again. It was incredible to be able to eat. One really annoying thing about Taxol was trying to freeze my hands and feet throughout the infusion to prevent neuropathy. After the first infusion, I swear I had frost nip (really minor frost bite) from being too aggressive with the icing. After that, I made sure that I paid much more attention regarding cycling in and out of the cold. Also, I was on dose-dense Taxol, and again had some allergy issues, so my infusions were 4-5 hours long. That is a lot of time on ice. I did get neuropathy, but it was mostly numbness and did not progress to anything painful. As of the time I am writing this (~8 weeks after my last chemo infusion), the numbness is still there, but not really noticeable during my day-to-day activities. It is probably a 2 out of 10, so I think the icing helped. Taxol also causes some skin to get darker and caused my nail beds to slightly darken, but not enough for me to have to paint them. I was nervous about losing nails, but that did not happen. None were even loose.
When I pulled together this post, I was not really sure how to write it, since the chemo experience is going to be so different for everyone, but there were a few things I did that I think helped:
No matter how bad I felt, I forced myself to drink at least 64 ounces of water a day. On days when I felt better, I aimed for 90 ounces.
I went to the Cancer Center every Monday after my infusions for IV fluids. With my heart issues, they often also gave me magnesium, and also gave me dexamethasone to help with pain. I did not realize how much that steroid did until one Taxol infusion where I said I didn’t think I needed it. I was up all night in terrible pain.
I decided to go vegan during this experience, but I did let myself eat what feels good. So, if I could get air fryer French Fries down, I ate them. I lost ~25 lbs during chemo (I’m 5’6″ and started at 143 lbs, went down to 118 lbs).
I drank a nasty green juice when I could get nothing else down (kale, celery, cucumber, wheatgrass, and pear). I held my nose and chased it with water. It was rough, but all food was pretty rough (particularly during AC).
My doctor recommended B complex for the neuropathy. Not sure if it helped, but she said she has seen success.
I did not talk about hair loss above since so many blogs go into that. It is traumatic and no one can prepare you for it, but I do not regret NOT shaving my head until I had to. I felt like myself for longer and I did not mind the shedding. I chopped it to a bob cut myself about 3 weeks in and even after hair fell out, I had enough that with a cap, it looked like I had hair. Then, one night, when I realized I was starting to look like Gollum from Lord of the Rings, I decided enough was enough and pulled out most of my hair in the shower (I say pulled, but it came right out). Then, the next day I actually shaved it. This was probably around 4 weeks in. Do what is best for you.
Keep nails and toenails cut short.
Ginger candies are awesome…and I actually hate ginger, but they really worked.
Make sure you are pooping and if not, take something. I lost sight of this one time….and I paid for it.
If possible, have people check in with someone else on your status during chemo. My husband updated family and friends so I didn’t have to worry about responding to text messages. In hindsight, I should have just done this blog in real time and given everyone the link (oops!).
If you have kids, have the tough conversation before chemo. This was terrible, but we did it. My 9 year old son actually asked if I was going to die and I had to say I didn’t know, but the doctors were doing everything they can. The school gave us a little printed out book called My Mom is Sick, which was great. It talked about hair loss and being tired, etc. He was actually really prepared when chemo time came. When he saw me bald for the first time he said “You look different but you are still mommy”, which was from the book. He also told me once to “stop crying because we did that already” lol. Smart kid.
I gargled with a water, baking soda and salt combo 3 times a day to prevent mouth sores and actually never had any. Not sure if it was the rinse, but it was so easy that it was worth doing.
I bought one of those port sweaters to wear to chemo and loved it. That and a pair of leggings were my chemo uniform.
Get help. I was going through chemo during COVID, so we didn’t have many people come over to help…and it was bad. I strongly recommend NOT doing that and getting help where you can, if you can.
Buy a blood pressure cuff and a pulse oximeter to have at home for the rough times. It helps you know where you’re at.
Figure out what activities keep you happy during chemo and make sure you are prepared with that when you go. Some people want to work, others want to read a book or color or meditate. It just depends. I liked to stare at my IV lines to make sure there were no huge air bubbles and then laid there paranoid. No, I am kidding – well, half kidding. I actually liked coloring – it was soothing.
We are pressed on every side by troubles, but we are not crushed. We are perplexed but not driven to despair. We are hunted down, but never abandoned by God. We get knocked down, but we are not destroyed. 2 Corinthians 4:8-9 NLT
Disclaimer: I am not a physician and am simply sharing my story. Please consult your physician for any medical concerns or treatment decisions.
Disclaimer: I am not a physician and am simply sharing my story. Please consult your physician for any medical concerns or treatment decisions.
After you are diagnosed with breast cancer, there is this flurry of activity that needs to happen. This is why they give you a nurse navigator – because the entire process is insane. Or maybe it just feels insane because your life was turned upside down? Either way – it is crazy. The strange thing is that while it is happening, you are getting asked about 5 million questions from other people who love you and just want the best for you. Overwhelming does not even begin to describe it – and, strangely, looking back to that time, which is now about 4 months ago, I didn’t have any concept of how much more overwhelming it was going to get. I am not sure if I even do now since I am still in the chemotherapy phase as I write this.
As an epidemiologist, I conduct medical research for a living and I love my job. However, when that is your job, it is almost a mental conflict of interest. It is like trying to serve as your own doctor. I made it my life’s mission to become an oncologist in less than a week. I lived on PubMed reading everything I could get my hands on. I scoured the NCCN guidelines. Then, a really good friend who also happens to be my past PhD advisor told me to cut it out and stop reading. He was right – all it did was give me anxiety. Sometimes, you just need to give it to God. I am not saying to be uninformed or not to be your own advocate, but at a certain point, you are starting to do harm.
Anyway…onto cancer staging. The next step was an MRI of both breasts. The scary thing about that MRI was that it had the ability to tell me if the cancer spread to lymph nodes and also whether it was present in the other breast. To be clear, cancer can spread on a microscopic level without it being seen on MRI. This is why some people have imaging that is “clear”, but then later find cancer in other places in their body. However, it is the first best guess they have as to extent of spread (they will check lymph nodes during surgery).
My MRI showed the following:
Left breast: 1.4 cm anterior-posterior by 1.2 cm transverse by 1.2 cm craniocaudal irregular, enhancing mass in the deep outer, lower left breast. No additional suspicious enhancements.
So all they saw on the left side was what they already knew I had (whew!). However, what they also found were 3 nodules in the right breast (ugh!). These were very small and they thought they were benign based on the imaging, but they also thought my original mass was benign, so I had to have an MRI guided biopsy to further evaluate them. Thankfully, those did turn out to be benign.
When all was said and done, here is where I landed:
Stage 1c
T1c (~1.2 cm mass)
N0 (no lymph nodes on MRI)
Mx (low risk of metastases)
Treatment
Neoadjuvant chemotherapy: Adriamycin (aka doxorubicin) and cytoxan (aka cyclophosphamide) once every 2 weeks for 4 cycles followed by taxol (aka paclitaxel) once every 2 weeks for 4 cycles
Surgery: Lumpectomy with radiation OR single/double mastectomy (to be determined later)
Next Steps
Have port placed (I admit this made me really nervous, but I am glad I did it – it is ugly looking, but made chemo, blood draws, etc. so much easier)
Have echocardiogram to get clearance for adriamycin (adriamycin can damage the heart)
Think about fertility and egg freezing (after 4 miscarriages I decided it was time to just let this go)
Think about cold cap (this is a system that freezes your scalp to help minimize hair loss. Given that brain metastases is one of the common sites for breast cancer spread, I decided against this even though I knew the risk was small. Also, I knew someone who did it and her hair fell out anyway).
Argue with insurance company who tried to deny my chemotherapy (I am not kidding – this actually happened. My doctor had to get on the phone and show them the NCCN guidelines so they would approve it)
Talk to other breast surgeons and oncologists (Luckily, the good friend who I had referred to earlier in this post had published a lot in breast cancer and was able to connect me to some oncologists in different networks for informal second opinions. I was able to get 3 additional opinions really quickly, and they all agreed with the initial treatment plan. They pointed out some small deviations they might make, but generally, everyone was on the same page. That made me feel a lot more comfortable, especially considering that I was right on the cusp for getting neoadjuvant (before surgery) vs. adjuvant (after surgery) chemotherapy. Besides the fact that I was (am) a triple-negative patient and the cancer is aggressive, there were 3 main reasons that they decided on neoadjuvant chemotherapy: 1) It may take 2-4 weeks to get on surgery schedule and without chemo during that time, the tumor will continue to grow quickly; 2) after surgery, you cannot start chemotherapy for 4-6 weeks because you need to heal, so during that time if it had spread anywhere else, it will grow in it’s new location, and 3) because triple-negatives mostly rely on chemo given the lack of hormonal targets, receiving chemo first helps doctors understand what chemo agents are effective against a person’s tumor. For example, they want a 100% pathologic complete response, abbreviated as pCR, at the time of surgery or I will get more chemo. This is because if the chemo did not make the original breast tumor disappear, it is likely that any cells that spread outside of the breast are still present and those are the ones that are dangerous. If they did surgery first, there would be no way to tell if the chemo worked since the tumor has already been removed.
So after all of this was agreed on…it was time to start chemo!
May the Lord bless and protect you. May the Lord smile on you and be gracious to you. May the Lord show you his favor and give you his peace. Numbers 6:24-26 NLT
Disclaimer: I am not a physician and am simply sharing my story. Please consult your physician for any medical concerns or treatment decisions.
Disclaimer: I am not a physician and am simply sharing my story. Please consult your physician for any medical concerns or treatment decisions.
When I was working on my master’s thesis, I selected predictors of triple-negative breast cancer as my topic. Why? It is a very aggressive diagnosis that often impacts younger women who don’t see it coming. At that time, I never could have anticipated that I would be one of those women. All the reading, studying, and sympathy I felt…and now here I am with no hair, hardly any eyebrows, on a day when my heart rate is normal enough to feel functional, typing out this story of my diagnosis.
I would love to say that given both my master’s thesis and PhD dissertation were focused on breast cancer that I checked my breasts at least on a regular basis. I didn’t. Now, don’t get me wrong – I checked them, but more on a random basis. In October 2020, I had just been checked by my OBGYN, so that is why I am surprised that in late December 2020, I felt the urge to check. Unfortunately, something didn’t feel right. There was a small lump in my left breast…sized somewhere between a pea and a chickpea. I even called my husband into the bathroom and made him feel it to make sure I wasn’t crazy. I called my primary physician who was out of the office on vacation. Then, I called my OBGYN, which ended up being a great stroke of luck. He did not feel anything on my last exam, but he said that if I felt it, he trusted me and I did not need to go in. I should go right to an imaging center to get a mammogram. I was lucky enough that there was a cancellation at a local breast imaging center, so I was able to get the mammo in 2 days. Perfect!
I went in and since it was diagnostic, they make you put this marker on your breast over where the lump is, which is actually not as easy as you would think. Anyway, when I the mammo tech was done, she said I would also need an ultrasound. I wasn’t really concerned since I knew I had dense breasts, so I already assumed they would need an ultrasound. Then, I could hear the mammo tech and ultrasound tech whispering. I heard the mammo tech say “There is really something there”. Again, I stayed calm because I knew there was something there. I mean, I felt it.
So, I had the ultrasound done and the tech clearly sees the lump because she is using the ball to measure something. I have had 4 miscarriages, so I have had a lot of fetuses and gestational sacs measured. I am starting to learn what they are doing. Also, when I left, I saw a black circle on the screen, which was clearly “the lump”.
My OBGYN called me and let me know that the report said the lump is in fact a cyst and is probably benign, so the radiologist recommended that I go back for imaging again in 6 months to see if anything changes. My OBGYN (aka my hero), then says “I know they say it’s no big deal, but it is something in your body that shouldn’t be there, so why leave it. I think you should go to a breast surgeon and have the cyst drained.” That made sense to me, so I looked up a local breast surgeon and went in to have it drained.
Fast forward to the breast surgeon visit, which was about 2 weeks later. She looked on ultrasound and agreed it looked like a cyst. It was almost a perfect circle, no gray areas or shading, no “spikiness”, etc. She said guidelines say it does not need to be drained, but if I want it drained she will do right then in the office. So, I said yes, let’s do this.
Within seconds, I knew something was off, even with her mask on. The needle was in, but her eyebrows were creased and she said “Maybe I just need a bigger needle”. So, she returned with a bigger needle. She tried again and her eyebrows creased again. I knew – it wasn’t draining. If it wasn’t draining, it was a mass. However, there is a benign mass called a fibroadenoma, which I figured it must be. She told me not to be nervous, but confirmed what I was thinking in my head – it did appear to be a mass and she asked if I would like it biopsied. I almost wanted to laugh – does anyone ever say no to that question? YES, please biopsy this thing. So, she biopsied it and assured me again that nothing on imaging suggested cancer. In fact, the chance it was cancer was only 2%.
I returned a week later for the results and the first thing I found odd was that they asked to take my picture for their file. Wait…what? I walked in there literally still thinking this was not cancer. Why would they need my picture for a file if I was never coming back after this visit? However, I chose to ignore the thought because I was probably just overreacting, right? Then, I went into the exam room and changed into a gown so the doc could inspect the biopsy site. I heard a knock on the door and when the doctor walked into the room, she looked at me and then looked down at the floor immediately. Now…anyone who has read the story of my son being diagnosed with infantile spasms knows that this is exactly what the doctor did when she walked in with that news. That was the moment I knew I had cancer. All she said was hi, but I knew. She asked some questions about biopsy site pain, looked at the site, said it looked fine and then….she came out with it. She sat right in front of me, looked me in the eyes and said “It is going to be okay, but there were cancer cells there”.
All I could think was that I am 39 with a 9 year old son at home. I couldn’t leave him yet. My husband’s mother died at the age of 49, his dad died at the age of 57 and his brother at the age of 39 – all due to separate medical conditions. I could not leave my husband too – he already lost his entire immediate family!! I could not be another person to leave him. All I could think was God, please do not make me leave either one of them, not yet. I could barely speak, but I told her that this felt ironic. All of my master’s/PhD research was focused on breast cancer and specifically triple-negatives, and there I was with breast cancer. Then, she looked at me and let me know it was triple-negative. She said she almost wished I didn’t know anything about it – likely because let’s face it, if you had to pick, triple negative is not the kind of breast cancer you would want if you had a choice. Super aggressive, fast dividing, higher recurrence rate, more likely to die, less treatment options….how did this happen?
With all of that said though, I am so glad my OBGYN had me go to get it drained or I would have had a triple-negative breast mass growing inside of me for 6 months. To quote another breast surgeon I spoke with, that would have been “life-changing”. I also thank God my primary care doctor was out of the office. She is wonderful, but much more by the book and probably would have followed the radiologist’s recommendation to wait 6 months. I consistently thank God for this strange set of circumstances – the fact that I checked my breast in and of itself was a miracle, not to mention my primary care physician being out of the office and my OBGYN giving the advice he did.
So….I left the office knowing chemo and surgery were in my future. But more immediately, I had to go home and tell my husband, which ended up being one of the hardest things I have ever had to do in my life.
Pathology information:
Invasive ductal carcinoma with brisk lymphocytic host response, Grade 3
Estrogen receptor: Negative, <1%, weak intensity
Progesterone receptor: Negative, 0%, no intensity
Her2: Negative
Ki-67: 60-70%, high proliferation rate
P53: >95%
Trust in the Lord with all your heart; do not depend on your own understanding. Proverbs 3:5 NLT
Disclaimer: I am not a physician and am simply sharing my story. Please consult your physician for any medical concerns or treatment decisions.
Infantile spasms – those two words actually give me goosebumps to this day. Sometimes when I tell the story about Brayden to another person, I notice that I almost whisper these words, as if by some strange superstition the disease can be summoned to return when I say it out loud. With that said, I still love sharing Brayden’s story because I think it is one of those stories that can give other moms some hope. After Bray was diagnosed, I was terrified by his prognosis, but there was one positive story posted online that I held onto with everything I had. If you are reading this because you have a child that was diagnosed with infantile spasms and are reading as many stories as you can (totally been there!), please read on. I won’t pretend that my son doesn’t face his own challenges (who of us doesn’t?), but he is amazing and teaches me new things every day. As a disclaimer, I am not a physician and am just sharing my son’s story. Please consult your physician for any concerns or treatment decisions for your child.
It all began when Bray was 4.5 months old. We started noticing these strange movements that mostly happened when we were feeding him. The first time it happened, his eyes rolled back and his arms flew out to the side. To be honest, in my ignorance, I thought maybe he just swallowed his milk wrong or had heartburn. It was so easy to rationalize away.
A day or two later, my husband mentioned that he noticed a similar thing and Brayden’s daycare said they noticed as well. Whatever these events were, they began happening more frequently. I remember that we were right in the middle of discussing whether we should call the pediatrician to make an appointment or go to the emergency room when my son’s whole body started shaking in my lap. His eyes were fixed somewhere off in the distance. Then, we both knew – they had to be seizures.
Of course, that made the decision easy – we were off to the emergency room. The ER was busy and the staff rushed us through the story of what happened. They did not feel that his case warranted a visit by an attending physician. The resident told us not to worry about it and that sometimes heartburn in babies can look like a seizure (which, in their defense, is true). They said to follow-up with my pediatrician to see if he thinks an EEG is necessary, but they did not think it was a seizure (despite not performing an EEG). We walked out of the ER with a script for Prevacid (a medication for heartburn) and false sense of security. That was probably the last time in my life I ever trusted a doctor without hesitation.
A couple of days later, the “heartburn” events started happening in clusters. His eyes would roll back, his arms would fly out to his sides, and his knees would go into his chest. The only difference was that the movement became much stronger and happened about 10 times in a row, multiple times a day. I can still remember the look on Brayden’s face after an episode – he looked confused and scared. He would always cry.
It had been less than a week since our ER visit and I couldn’t shake the feeling that something wasn’t right. I was telling my husband that my mommy radar was detecting something really bad (always trust your mommy gut!) and then, as if on cue, Brayden had another full-blown seizure right in front of us. His whole body was shaking and you could only really see the whites of his eyes. Luckily, we were living only about an hour and a half from the Children’s Hospital of Philadelphia (CHOP), so we decided to pack our baby into the car and get a second opinion.
The experience at CHOP was very different than the prior hospital. The emergency room physician was amazing. He literally sat down with us and said “Okay, start from the beginning and by beginning, I mean your pregnancy”. He actually listened to me recount everything and even though it was the emergency room, I never felt rushed. He ordered a neurology consult and when the neurology resident came to see us, Brayden had a seizure right in front of him. The resident had us record the seizure with our phone and he called his attending physician to come down. In retrospect, I wish I had recorded some of the episodes earlier. The attending neurologist came into the room, watched the video and then looked at the resident standing next to her and said “order it, STAT”.
My son had his EEG and when he was done, we just went back to the emergency room to wait. I hated that wait. There are some things in your life you can’t erase from your memory – that wait was one of them.
When the doctor came back into the room, she looked at me for a split second and then looked down. It’s never a good sign when someone can’t look you in the eye. I knew as soon as she looked down that it was going to be bad, really bad. What came next would change my son’s life forever. She said that the EEG showed hypsarrhythmia (pronounced hips-uh-rith-me-ya). What is hypsarrhythmia you ask? It is an abnormal EEG pattern that is associated with infantile spasms or West Syndrome. People always seem to think seizures in children are mild or caused by fevers – this is not one of those seizures.
She proceeded to tell us that 80-90% of children with this condition have moderate to severe cognitive impairment and that the medications needed to treat this condition are very strong and carry a risk of death from treatment complications. She explained how this seizure type is rare and occurs in only about 2 kids in 10,000. In other words, 99.9998% of children do NOT have infantile spasms. Then she told me not to go home and google because she didn’t want me to lose hope.
She provided much more detailed information about the condition, about his EEG results, about treatment options, but all I kept hearing was cognitive impairment and death. It couldn’t be real. This was not supposed to be his life. So what did I do? I went home and Googled the crap out of it. Everything I read referred to it as “the catastrophic epilepsy”. And that risk of death she mentioned…up to 30% chance before the age of 2 years old. I cried alone in the bathroom because I wanted to look like I was strong. I wasn’t strong. I was scared and sad and felt hopeless. I’m his mom – I’m supposed to protect him. What if I ate something wrong when I was pregnant? What if I didn’t notice the seizures soon enough? What if…what if…what if…
The next morning, I woke up to Brayden crying on the baby monitor. I sat up in bed and couldn’t move. I just sat there and wondered if everything was just a bad dream. I was in a complete fog, not understanding how life had changed so much in 24 hours.
Over the next few weeks, not only did his development stop progressing, but it began regressing. He forgot how to roll over and eventually forgot how to track objects. He stopped looking at us for the most part. They had him on high-dose oral prednisolone (40 mg/day to start) and the medication ravaged his body. In the doctor’s defense, she warned us ahead of time that it would be rough. Brayden doubled his weight (as you can see in the picture above). He wasn’t sleeping, was extremely irritable, had to go on blood pressure medication, started having trouble breathing…I could go on and on.
He was having about 15 episodes a day with about 30 individual spasms making up each episode. Sometimes a more typical seizure presentation would be thrown in there. Not to mention that with hypsarrhythmia, his brain was having abnormal activity ALL the time, even when he was not having an outwardly symptomatic seizure. All I could do was hold him and tell him it would be alright. I was lying…I had no idea if it would be alright. To be honest, I might have been saying it more for myself than for him.
We were at the hospital constantly. EEGs, MRI, EKGs, spinal tap, constant bloodwork, nephrology consult, cardiology consult, neurology follow-ups, etc. In the majority of cases, they find a cause for this particular seizure disorder, but in Brayden’s case, they never did.
At one point, we thought the seizures were gone since he had gone about 48 hours without one, but they came back with a vengeance. Even increasing the dose of his medication to 60 mg/day did nothing. They kept getting more frequent and I felt like I was being swallowed by a massive vortex. The doctor had said the toll the medication was taking on his body was too great and I felt like I was losing my mind. I couldn’t help him and all I could think was “I am his mom – why don’t I know how to help him!?”
All the time, I just prayed. Everyone prayed. People I barely knew said they would pray. Relatives across the country were praying. People I hadn’t seen in years were praying. People who don’t pray were praying. In desperation, I tried bartering with God. I begged…crying, on my hands and knees. I would love to say that I had enough faith to know that everything would be okay no matter what, but I didn’t. I was devastated, terrified, and lost.
Since the prednisolone did not seem to be working and the doctor said his organs were starting to shut down, we had to switch medications. The first one offered was vigabatrin. For those of you who don’t know vigabatrin, it is one of the medications where you have to sign a paper stating that you understand the risks before you take it. We were told it had a 30-50% chance of causing permanent peripheral blindness. My doctor actually had me cup my hands around my eyes so that I could see it wouldn’t be too terrible without peripheral vision. It didn’t really work, but I love her for trying to make me feel better about it.
Still, I had a strong feeling not to use that medication. I remember that friends in church would always say they felt God speaking to them about a certain issue in their life and this was one of those moments where I actually understood what they meant. I admit that I am not sure I really ever felt that prior to this experience. After some research, I had seen that in Japan and Europe high-dose B6 helped children in some small studies because there is a very rare genetic deficiency that can cause this type of seizure. The doctor agreed to try it and ordered a genetic test for him as well.
We started the B6 and a few days later, the seizures stopped (praise God!). We just kept waiting and waiting. Staring at him every day. I don’t think I ever took my eyes off of him, looking for any sign of them…but they didn’t come. Even the neurologist was shocked, especially when the genetic test came back negative, so there was no reason why B6 would have worked. It was a miracle – I had just witnessed an actual miracle. (To be clear, I am not advocating forgoing or delaying medical treatment without a clear scientific rationale and agreement from your physician. In this case, there was supportive data, a clear biological/genetic pathway why B6 could work, and agreement from his neurologist, which is why we tried it given side effects associated with the alternative.)
Brayden was getting physical, occupational and speech therapy and began developing more and more every day. He began running, playing, interacting with other kids and even starting to speak, which they weren’t sure he would ever do. I remember in my prayers, I asked that whether he was meant to be cured or not, please just let him be happy. He is the happiest kid you have ever seen. He smiles constantly and loves to laugh. Even more than that, he loves making other people laugh. He was diagnosed with autism at the age of 3.5 years. It took a while to get the diagnosis because it was hard to tease out the developmental delays vs. autism. So, at that point, he also started ABA therapy, which has been a tremendous help. We found a therapist that really fits his personality and is one of his favorite people. I know I am biased, but he really is an amazing child. He is so loving and kind. He is extremely social and loves talking to people and making friends. They said he might never speak, but he is having full conversations. He is reading, writing and doing math pretty much at grade level. He has a best friend who he talks about at home and a girlfriend (lol!). He struggles a lot with attention, and we work on it, but to be honest, I can’t believe how far he has come. He has had to overcome more in his life than I ever have. He’s my little hero and my absolute favorite person.
A couple of years back, I told Brayden’s story to a mother who was facing some challenging medical news about her daughter. She said to me, “this is the first time I feel like I have hope”. It is very easy to lose hope in this world, especially when the odds are not in your favor. When Brayden was diagnosed, I scoured the internet looking for just one story, one happy ending to give us hope. I remember finding just one and I clung to that one story with everything I had because there were so many sad stories. I just wanted to share our story so that maybe it can give someone the hope that I needed. Even though we don’t see them every day, miracles do happen.
Jesus looked at them intently and said, “Humanly speaking, it is impossible. But not with God. Everything is possible with God.” Mark 10:27 NLT
