Diagnosis & Chemotherapy
January 29, 2019
Hi everyone! Welcome to Lisa’s Boob Blog. Rather than posting publicly, I created this space to share updates about this journey with those who are closest to me. Here’s an abbreviated overview and the latest update!
Diagnosed: December 24 (yes, on Xmas eve)
Type: Triple Negative Invasive Ductal Carcinoma (don’t Google it, I’m fine I promise)
Doctors: Memorial Sloan Kettering in NYC
Dr. Andrew Seidman, oncology
Dr. Virgilio Sacchini, surgery
A Jew and an Italian!!! Couldn’t be better!
Stage: 2. All in right breast, I have a 1.8cm mass on top and two .6-.8cm spots on the bottom. Plus I have “suspicion of involvement” in my Axilla lymph nodes aka my armpit. The biopsy was technically inconclusive on the nodes, but they are treating it like it’s cancer because the chemo will kill it anyways. Yay!
Other tests: Everything was clear, no signs of metastasis in my CT scan or my bone scan. I DON’T have the BRCA or any other genetic mutation, so I wasn’t predisposed to get this, it was just bad luck... life!
Fertility: Preserved! That process happened in January and we’ll be genetically testing the embryos so we can ensure that we have super Marzullo babies after this is all done. Essentially, chemo will put me in a medically induced menopause, and while signs are good that with my young age and my general good health, I should have no problem coming back to a regular cycle and naturally conceiving in the future, we figured better to be safe than sorry. Treatment: Neoadjuvent chemotherapy aka pre-surgery chemo. The type of cancer I have is reliant on chemo first - they can’t use a hormone blocker because I had no hormones in my cancer to block (hence, triple negative). Once the chemo ends, I’ll do another mammogram and MRI and the surgeon will confirm a course of action. Originally, they said right mastectomy, but because I don’t have the gene mutation, I may be able to have only a double lumpectomy. Time will tell! So, I started yesterday! Chemo session #1 in the books. The cocktail is called ACT - the first two months are biweekly (4 total sessions) of AC which is Adriamycin and Cytoxan. They are distributed via IV, in addition to three anti-nausea medications and a steroid. About 80 minutes total in the chair. Before that, I do blood work to check my red and white blood cell counts, and do a physical exam with the oncologist or the RN. After, I take steroid pills for 3 days and anti-nausea pills only as needed. Expected side effects are nausea (so far, nothing) and constipation (I’ve pooped!) Knock on wood these side effects stay light. Additionally, I have a patch called Neulasta which distributes a white blood cell booster 27 hours after chemo. That went off around 4pm today. Side effects for that are extreme bone pain.... we’ll see. Hasn’t hit me yet. The next phase of chemo - T for taxol - is actually kind of tbd right now. Originally, the plan was to start the same 4 session biweekly regimen as the AC after that ended. But unfortunately, when I had my exam yesterday, I had some visible signs of additional node spreading in my chest/neck area - basically some of the nodes below my collar bone felt a bit enlarged when they didn’t a couple weeks ago. The time it took for the fertility preservation may be to blame, but it is what it is. Because of that, and the fact that I am otherwise healthy and he feels my body can take extra medicine and be ok with it, the oncologist may “throw the kitchen sink at me” and add in a 4th chemo drug, carboplatin. That would make the taxol/carboplatin cocktail a 12 week weekly course instead, ultimately adding one month (and 8 additional treatments) to my plan. BUT I won’t need the bone pain causing Neulasta with that if so. So, ultimately, we have to wait and see how I react to the AC before that decision can be made. This was something that was discussed as a potential with us in our first meeting so it didn’t come as a complete surprise. Ultimately, what’s one more month of chemo? Not much. Other news - I cut my hair. I have a pixie! I got a beautiful wig for free from the American Cancer Society, and they are also making me a “halo wig” with my hair... it’ll be like a yarmulke so no hair on top, meant to wear a hat over. We’ll see how that turns out! I’ve been rocking the pixie so far and getting lots of compliments, but ultimately my hair will officially fall out by my second chemo session on February 11. That’s about it! This is NOT a pity party. This is a place for me to keep everyone informed. In fact, I turned off commenting on this post, sorrrryyyyyyy! This is NOT a place to feel sad. I know that Dave and I are attacking this with a positive mental attitude and it is working. So much so that for the first time in a couple months, I actually slept with no pain last night. I need to trust the process. And we need to feel comfortable and confident with my doctors, which we do. We are in the best hands possible and this will be just a chapter in my book of life. I can’t thank you all enough for the positive vibes and support over the past couple months. Not only for me, but for my entire family.
February 4, 2019
Hi all - Thought I'd share a week one update! Also, today is World Cancer Day, what a weird day to "celebrate."
All in all, last week was a breeze. I had minimal side effects after the chemo - no nausea really, no bone pain. Some general fatigue but who isn't tired anyways? The pain in my arm from my lymph nodes had already started to go away in the first day or so. Couldn't have asked for a better first week, let's hope these side effects stay consistent!
Unfortunately, this past weekend wasn't too great. On Saturday, I thought I'd take the new wig out for a spin. I put it on and immediately felt like a stranger to myself. Even though the wig is beautiful and looks really close to my old hair, it just felt weird. Like I was wearing a hat that everyone could tell was a wig. And it felt like it was either too tight or too loose so I was constantly looking at myself in the mirror and adjusting it. I have no idea if anyone even noticed, but I had terrible anxiety about it and made Dave take me home. We'll try again another day - in fact, probably this week, as luck would have it I am required to take a new employee ID photo. Hoping to feel better about it then.
On Saturday night I was feeling a bit of arm pain, normal, but I woke up around 3am in excruciating pain on Sunday morning. The pain was sending a tingling feeling all the way down my arm and into my fingers. Unfortunately it didn't go away as the day progressed, so we decided to call Sloan. Ultimately, the on-call doctor thought it would be best for me to come in so they could run a few tests and rule out anything major like a blood clot, so in to the city we went. 6 hours later, 2 x-rays and an ultrasound were completely clear. The pain is simply caused by my enlarged lymph nodes pushing on my nerves, old news. No real reason why the pain comes and goes, and nothing I can really do about it except continue the chemotherapy as scheduled. They gave me some oxy but I took it on an empty stomach so needless to say, I felt like crap. I decided to work from home today to recoup some energy. My actual oncologist didn't call me today to check up, so I assume he saw the results and spoke to the on-call doctor and knows I'm fine, and it is what it is.
That's about it for week one! On Friday, I am going into Sloan for a half-day exercise assessment, as I will be joining a clinical trial to study the benefits of exercise during treatment. After the assessment they will put me in one of 4 testing groups, and likely will send a free treadmill and iPad to the house so I can do guided workouts throughout treatment with a specialist. Pretty cool! (Sidebar, these are walking-based exercises. Just my style!)
Chemo #2 is schedule for Feb. 11th. Until then!!
February 12, 2019 (Post 1)
A bunch happened this past week so I'm sharing another update.
Fertility: We got great news that 3 baby Marzullo embryos are healthy and ready for us, when the time comes in a couple years. Basically, after a process of natural selection, growth, and genetic biopsies, we were left with three 100% healthy embryos. Each of those has an 80% chance or so of taking upon implantation so our odds are really good, and the fertility doctor was pleased!
Exercise trial: Walking on a treadmill? What a breeze... I thought. Apparently 3 months of inactivity caught up with me! Regardless, I made the trial and was placed into the group that will work out 3 times a week via video chat with an exercise physiologist from Sloan both during AND after chemo ends, so approx 8-10 months. Dave is secretly more excited that we'll have a treadmill at the house. I really wish I took a picture of all the crap they had me hooked up to, but you'd get the gist if you Google image search 'athlete exercise stress test' where you'll see the whole headpiece I had to wear during it and I could only breathe through my mouth. I also did both a resting and an active Echo. The techs kept saying I had a beautiful, healthy heart. Flattering!
Hair: On Friday, I also picked up my "halo" wig, which is a wig made out of MY hair that they cut off a few weeks ago. It is initially very creepy to look at, but once I put on a winter cap or any low-back hat (because there isn't hair in the back), you honestly cannot tell it is a wig. It will be a good back-up. Also, they went through and thinned out my other wig, so it looks less voluminous and more natural. I am really happy with it. In other hair news, I'm finally starting to see some of my pixie cut fall out... it's not aggressive, but if I run my fingers through it or pull a little, I get about 5-10 strands of hair in my hand. It's upsetting but we knew this was going to happen, and on the plus side I now know that I can rock a pixie once this grows back in the fall! Dave and I will likely shave this off today. Potential video to come, depending on how dramatic it is!
Chemo Session #2 in the books! I had that yesterday. As expected, my side effects so far have been manageable. I would say I am definitely more tired and a just a little bit more nauseous than last time, but in full transparency I did have Taco Bell for lunch post-chemo so let's be honest, that's probably half the problem! That being said, Dave and I are both working from home (in the snow) today, and hoping to recoup some energy by tomorrow.
Yesterday before chemo I met with the RN,
and she did a physical exam in which she said she could feel the larger mass flattening - which is the first of 3 stages of seeing the tumor shrink. 1 is flattening, 2 is softening, 3 is actually getting smaller. So that is good news! I also haven't had any pain in my lymph nodes since the outburst last weekend. My only other small issues at this point are that my skin is starting to dry out, so I'm having some irritation in my armpits and a bit of dryness on my face. They said to use gentle products, like Johnson's baby shampoos etc, and even potentially avoid shaving since all my body hair will fall out anyways.
And that's the latest!
February 12, 2019 (Post 2)
Another update today - we took the plunge and shaved my head! It’s a 2 on the buzzer so the rest of this will fall out but it was time to go. Ta ta for now, hair!
February 15, 2019
Wiggin’ out today! Trying to avoid makeup so I can save my precious eyebrows and lashes. Thankful for clear skin
February 25, 2019
Hello boobers. Chemo #3 in the books. This photo took forever to take because apparently I can’t hold my hands in this formation normally
Photo cred: Dave and thanks for being there today Mom & Dad. Hat cred: Maureen & Fio - too windy for the wig today!
How am I feeling? Tired. Very tired. That’s the general gist at this point. The first 24 hours after chemo ultimately aren’t fun. But it’s all manageable. I’m exhausted, nauseous but not that bad. I can’t usually eat dinner on Mondays after treatment so I try to have a big lunch. Tuesdays are hit or miss. The bone pain comes Tuesday night but again, it’s not that bad. Mostly just my sternum, so taking a deep breath is not fun. That goes away by the next day. SOOO all that is to say, if you ask me how I’m feeling and I’m curt with my response, it’s because nothing has really changed there! Which is GOOD. But just don’t take it personally when I don’t elaborate
I’m also very bald now. That buzz cut fell out within a couple days. Now I have some peach fuzz which Dave thinks is weird haha. Chelsea Hoyes thinks I look like a rockstar, that’s very generous So far - knock on wood - I still have my brows and lashes. Not sure how long that will last but I’m crossing my fingers! I’ve dubbed the wig ‘Wiggy’ and we’re getting along now. I basically wear it everyday but I’m thinking about getting another shorter one just to have. The halo wig is also fine, but requires a low back hat so the options are a bit limited.
Treatment update - Dr. Seidman said things are progressing as he’d like them to. He said that with the Taxol, I may show / feel more noticeable results than the AC does, at least to me physically. Today he basically confirmed that he wants to add the extra chemo into my plan - so after March 11 (my last AC) I’ll go to a weekly Taxol/Carboplatin cocktail for 12 weeks. My calendar math shows that my last day will either be June 3 or June 10 depending on what week he starts me in March. That sounds like forever away but it will come soon enough! There are other benefits - 1. I’ll get to do every 2 sessions in Westchester rather than schlepping to and from the city which is awesome. 2. When I go weekly I won’t need the Neulasta which is what causes the bone pain so that’s great. And 3. I won’t have to sit in the chair as long with the Taxol as if I went biweekly, so my treatments should stay around an hour or so which is great. I’ll also likely have to do radiation after surgery. Nothing is confirmed yet but it’s probable.
I also started the treadmill exercise trial which is 3 times per week. The treadmill is in our basement which Dave also loves and uses daily. So far the video classes are pretty easy but I’m not gonna lie, I definitely break a bit of a sweat and may or may not secretly go a notch slower than they ask me to. I need to build up my stamina! Today they said they have an 80-year-old woman who KILLS IT so if she can do it, then I definitely can!
That’s all for now!
March 9, 2019
Happy weekend! Apparently someeee people (cough Megan) don’t think I post here enough so thought I’d pop in and say hi.
Not much going on! Feeling basically the same - so that’s good. I have my last AC treatment on Monday so phase 1 will be complete. Will be great to check that off the overall to-do list.
Our baby embryos are making their maiden voyage next week from the fertility center to a cryobank in midtown, where they’ll live a nice frozen life until we’re able to use them.
In annoying news, my insurance only refunded us half of what we expected to get back from the fertility treatment - aka we are out like $10k right now...! Needless to say, I had a strongly worded call with them yesterday and they are escalating the situation. After meeting all my out of network and out of pocket deductibles, I was told I’d be covered by a lifetime fertility benefit for the procedure and testing. You better believe I used the cancer card on the insurance rep, like - listen lady, I didn’t choose to have this done, I have cancer! She got quiet after that :)
Special shout out / thank you to Christina Casella-Della Pelle for riding in my name at Cycle for Survival this week. So thoughtful. Next year, I want to get a team together for sure! Right now I exert plenty of effort walking in my treadmill trial so a spin class may be pushing it.
Talk to everyone next week!
March 11, 2019
Woohoo! Phase 1 complete. 4 treatments of Adriamycin (aka the red devil) and Cytoxan over the past 8 weeks and I can cross this phase off the to-do list. Feeling a bit tired as usual but otherwise just thankful to feel some sense of completion, even though I know I am only about 40% through chemo timewise.
The nurse today said she couldn’t feel my larger mass anymore during the physical exam today.... like, what!? So stoked to hear that. Obviously, I am reacting well to this first phase and that gives me confidence that these next two drugs are going to really do their job. The goal here is “PCR” - a pathologically complete response. So keep your prayer chains and good vibes coming.
Thank you times a billion to Nicole and Erica for spending the past couple days with me and coming to treatment today. So lucky to have an amazing group of best gals supporting me from near and far. And also to Mr. Stephen Randolph who was sad we didn’t get a pic today, but has come to 3 of my last 4 treatments - having a friend on the inside at Sloan is amazing, but just your support and friendship is all I really need!
And obviously Dave who just warmed me up the most disgusting bowl of canned soup (not his fault, the soup’s fault!) but besides that has been my ultimate rock. I am trying to convince him to come skydiving with me... oh yeah! I’ve decided I want to go skydiving once I’m done with treatment, but probably before the surgery. So maybe early July. I asked the nurse today and she kind of laughed at me, but she said that I’m going to be pretty run down once chemo is over. But, all that being said, as long as I feel ok she said it’s ok! So send me your skydiving recco locations if you have them!
March 20, 2019
Hello and happy first day of spring (finally)! It's about that time in the group where people are antsy for updates SO here I am!
In the past couple days I had my first non-cancer related doctor's appointments since this whole shebang started. Just regular ol' annual check-ins at the eye doctor and the dermatologist. Of course, discussing cancer (or cancer's side effects) finds a way into every convo, so I learned a bit about how my eyes and skin could be affected. First, eyes - the doctor said that moving forward, they will basically look extra carefully at the dilation and photos of my eyes because *of course* chemo could have long term effects, but it is unlikely. I also need to be extra sensitive to the sun, aka wear my sunglasses.
At the dermatologist, they were able to look at all my little head moles on my shiny bald head. Who even KNEW how many spots were hiding under my hair?! All looked fine, although rather than an annual check, I will go back in 6 months since - again - cancer has a way of impacting your entire body and while my many spots look ok now, they will take extra precautions by checking me a bit more often to make sure nothing goes rogue.
In much more important news, the derm took off a little cyst on the side of my nose that I have had for YEARS and I literally feel like I have a new face. I bet no one has noticed I even had this thing. In fact, I struggled to find a photo of it but discovered this gem from a vacation Dave and I took a couple years ago where you can barely see it, but I promise you - it was there and now IT IS NOT. Also, first time the word cyst was used and wasn't a total negative so, win win!
In boob news, I'm a little anxious to start Phase 2 of chemo on Monday but from what I have been told, I should be able to "breeze" through it. I was given a heads up by a new friend, who I met through a group called The Breasties and went through the exact same treatment as me last year, that I should be prepared for the possibility that I may have to skip some weekly treatments if my blood counts are too low. AKA, I shouldn't be married to June 10th as my chemo end date, because that may change. That frustrates me a bit, because I am a planner, but I understand that this is all part of the process and I need to be flexible.
Lastly, I'm currently nursing a Thrombophlebitis in my wrist. In the spot that I had chemo OVER a month ago (which is odd), I developed a strange pain and bump which basically means that my vein didn't like the chemo. Treatment is Advil and a heating pad, and monitor if it gets worse. It's essentially a big word for a little problem! It does make me a little nervous that they will ultimately want to put in a port so my veins can take a break, but only time will tell.
And with that lengthy and not entirely important update, I bid you all adieu!