Summer 2019
Post-Chemo, Mastectomy & Reconstruction
June 17, 2019
Hello my boobalicious boobies! It's Monday and I don't have chemo! WOO! I'm sure you are all antsy for a blog post...or maybe just me?
Anywho, I do have a small scheduling update for those asking: My treadmill clinical trial midpoint test is now TOMORROW instead of today. I had to move it to accommodate some work stuff. After that I won't have the weekly treadmill routine until August where I'll pick it back up for another 4 months. I guess I'll have to "work out" on my own again!
Then the MRI is Wednesday afternoon around 5pm. Those results take a few days, which should be perfect timing for my mammogram on Monday 6/24. That was moved up by two days because of Dr. Sacchini's schedule. SO hopefully, on the 24th, I'll have a definite surgical plan and surgery date from him. It sounds like July 9th may have been booked up...which stinks. But we'll see!
I then have a plastic surgeon meeting on Thurs. 6/27. I had a choice of two surgeons which was honestly very stressful - it was a man and a woman. I was leaning towards the woman because she'll understand how important the visuals are, so I went with her!
Talk to y'all later.
June 19, 2019
Hi all!
Thought I'd give you a quick update that the MRI was pretty straight forward today. I also had the treadmill midpoint test yesterday and took a quick selfie with the clinical crew so you could see how ridiculous I look
Tomorrow we head to the Poconos for a little weekend getaway with friends. I'll give everyone another update after my mammo and meeting with Dr. Sacchini on Monday!
ALSO - Shout out to Kristyn Hodgdon and her rebranded blog The Fertility Tribe for featuring my story today xoxo https://thefertilitytribe.com/ttc-and.../cancerandfertility
June 25, 2019
Hello hello! Sorry for my delay in blogging. I was at Sloan all morning yesterday followed by an evening PR event, and then had an internal video shoot at work all day today. EXCUSES, I know! This is a long post so grab some popcorn. I'm here to share the news that people really want to hear - the results of my MRI and mammogram!
The mammogram said "you have cancer." So, that was a weird way to start the day. Then I sat there for 30 minutes waiting to meet Dr. Sacchini in a bit of a panic...
The mammogram ultimately is just a confirmation of the previous diagnosis (that's apparently how that works?), becauseeeeee Dr. Sacchini said that the MRI looked really good and I had a great response to chemo! He showed me my MRI from January vs. the MRI from last week and it was absolutely crazy to see practically NO white spots on the scans (aka lumps). Because of how much I had going on in my right breast -- remember I had three total lumps plus a "host" of other activity AND lymph node involvement -- he does still want to do a full right mastectomy. With that, I will also do the left, to be extra safe (and to be even - who wants one real boob and one fake boob? Not me). The left is considered prophylactic or voluntary, but it is still included/covered. Or as Dave says, I'll be going through the boob guillotine.
More good news - the surgery is definitely on July 9th! They will call the day before to confirm the time and I'll stay overnight after the surgery. I am taking a 4 week leave from work (sorry Ashok!) to heal, both physically and mentally. During the first 1-2 weeks, I will have four drains. I'll spare you all the medical gooey details but the drains will take out the yucky stuff after surgery. I'll also do some physical therapy and post-op appointments over the weeks after surgery, including beginning the reconstruction process. More specifics to come on that on Thursday after I meet the plastic surgeon.
During the mastectomy, a couple things will happen. First, regarding my lymph nodes - Dr. Sacchini would like to NOT take them out. He will perform a biopsy right there in the operating room on my nodes. If the biopsy shows no cancer, then he'll leave them. If there is residual cancer, he'll have to take them out. The MRI is a pretty clear picture, but, in his words, what happens in there is that once the chemo kills the cancer cells, new cells form in that place so it is hard to tell from a scan what is new and what is scar tissue (which could have lingering bad cells). The problem with removing the lymph nodes entirely is that they are your body's defense against crap spreading. These little guys saved me from having cancer spread throughout my body. Plus if removed, there is a 20-30% chance I could develop lymphedema which is the swelling of the arm.
SO, I joined another clinical trial specifically for lymphedema. lf he DOES take the nodes out, the clinical trial folks will monitor and measure the size of my arm for an extended period of time and they will also perform their own tissue analysis to see if they can learn more about why 20-30% of people develop lymphedemas. If he does not take out nodes, then I am not in the trial. I am happy to do any of these types of trials if it means someone else down the road doesn't have to deal with what I'm dealing with!
Secondly, serving all the truths here, he's taking my nips y'all. Because my main lump was close to the nipple, they have to take it. Ultimately, all the nerve endings in my breasts will be disconnected anyways so I won't have feeling any more - like, at all. Feelingless boobs. There are reconstructive options for nipples but that seems weird to me (as if this entire process wasn't weird enough) so I'll probably do tattoos or just leave them. We'll see!
Thirdly, and probably one of the main questions most of you have, is regarding terminology. Am I cancer-free? No, not yet. However, after the mastectomy all of my tissue is sent to pathology and 7-10 days later I will get those results. THEN they can tell me if I am "cancer-free" or not. I use quotes because I think the correct terminology will be NED or no evidence of disease. I don't think they throw terms like "cancer-free" around lightly. They will be looking for clear margins around where my cancer was and other tissue markers. Science stuff.
After plastics and some lymphedema measurements this Thursday, my next appointment is the day before surgery where they will inject my armpit with dye to help pinpoint the axilla (armpit) lymph nodes. Fun side effect - I will pee and poop blueish green for 2-3 days after that.
All in all, I'm so thrilled to be one step closer to the "end" of this process. Will report back later this week after plastics!
June 27, 2019
Hello again! I just got back from my plastics appointment and here is the update:
-After Dr. Sacchini finishes his portion of the surgery, Dr. McCarthy will come in and put in tissue expanders, which look kind of like an empty balloon with a magnet inside of it. The reason for doing expanders instead of going direct to the implant is because it will give my skin and muscles more time to stretch and heal before an implant is put in, and there is a lower risk of infection etc.
-I'll be going to Dr. McCarthy for the drain removals and expander fills. Because I will likely need radiation, they'll do the expander fills once (or twice) per week to be done in time for me to begin radiation.
-The fills are done with saline through a big needle, but my breasts (former breasts?) will be numb/feelingless anyways. The magnet is their guiding point, and each fill will be 100ccs of saline until my desired size.
-The expanders, and future implants, will be done under the muscle. What this means is that once all the breast tissue is gone, the implant will be placed underneath the pectoral muscle. IF cancer ever returns (HELL NO, CANCER!), it would be easy to spot because it would be on top of the implant vs. underneath it where it is much harder to detect.
-They actually do nipple tattoos at Sloan, and they are already booked up through NEXT July!
-Dr. McCarthy likes to wait a full 6 months post-radiation before doing the swap to implants. She is very conservative about the process, but it is to ensure that the skin is fully healed. Ultimately, my right breast may "sit" higher than my left as I age because the radiated skin and subsequent scar tissue will be tighter on that side.
-I do NOT have to have implants swapped out every 10 years - that is a myth!
Decisions I still have to make (but I won't worry about just yet) are if I want silicone vs. saline implants AND what shape I'll want them to be. They will be smooth, not textured, as there is a small risk of lymphoma (aka cancer) from textured implants. Which is nuts! The expanders will ultimately feel like tennis balls on my chest. They will be hard, and won't really move at all. But it is all temporary!
The full recovery is 6 weeks. That means 6 weeks of no lifting anything over 5 pounds (not even John the cat!) and no real pulling or pushing things, like the vacuum or heavy doors. I'll go through a similar recovery period after the implant swap surgery. With the drains, I can't shower with them AT ALL... so I'll be stinky on the couch for two weeks For the recovery period, I also can't go swimming or take baths. Basically nothing submerging.
In the future, after I have children, I could swap the implants for my own tissue which they would take from my stomach - like a tummy tuck! But I can't do that now because the scar tissue would be risky with pregnancy. Or I could keep the implants forever, whatever I want!
It was a bit overwhelming today - Dave and I kept looking at each other like WTF!?!? The only way to avoid all this is if I wanted to go flat. As in not have boobs at all any more. For some people, that is fine. But I definitely want boobs still, even if the ones I currently have gave me cancer!
This ended up being a way longer post than I thought BUT on that note, I have NO APPOINTMENTS until the day before my surgery so I hope everyone has a great 4th!
July 9, 2019
Hello all,
Surgery is done, and Lisa is feeling a huge weight off her chest. Everything went great, and best news is that they didn’t have to take lymph nodes meaning the chemo did its job in her underarms. All in all she continues to crush the cancer game, and is in high spirits. Feel free to text me with any questions etc. I’m sure Lisa will write a detailed blog in the coming days....so I’ll leave you waiting in anticipation.
Gracias,
David
July 10, 2019
A VIDEO boob update :)
July 16, 2019
Hi all! Not too much of an update one week post-surgery. Biggest news is that they took out 2 of my 4 drains today! It was the strangest feeling - because I’m completely numb, there was no pain but it felt like a big worm was quickly pulled from my chest. My plastic surgeon said that things look good and are healing the way they are supposed to, and I should be able to get the other 2 drains out later this week and start the fill process next week.
Regarding the numbness, that is basically a forever-ish thing since they disconnected all my nerve endings. There’s a chance I could regain some feeling down the road.
Otherwise things are good! I basically remain seated or laying down about 20 hours of the day. Getting up from sitting or laying is difficult because I can’t really use my arms to push or pull in any way. VERY thankful for the adjustable bed frame! I’m on a pretty strict medicine regimen while the drains are in, including antibiotics 4 times per day and an assortment of things for pain management. I don’t really have “pain” necessarily, mostly tightness/pressure. Energy levels are also pretty low since I’m doing so much nothing. I’ve been trying to take walks around the block when it’s not scorching out.
Today we made a spontaneous decision and ventured to the Yankees game and I was profusely sweating just getting to the seats.
Next week I’ll also see Dr. Sacchini for a post-op appointment and hopefully I’ll get the pathology results by then at the latest. Most importantly, my hair is finally starting to grow back! I have a bit of male pattern baldness going on but whatever, I’ll take what I can get!
Thanks everyone near and far for your calls, texts, visits, flowers, food, gifts and well wishes. I’m so grateful to have an amazing support system!!
July 24, 2019
Hi everyone!
Been sitting on some news for about 24 hours, so thought I’d finally share
I got the results of my pathology and they were amazing! My tissue was 99.9% clear - just one small, teeny, tiny, less than 1mm spec was left and it was stage 0 DCIS which means it was non-invasive. Honestly, eff you, you tiny spec of cancer. But otherwise HOLY CRAP HOW FRIKEN GREAT IS THIS NEWS!?
Before I name drop all my doctors below, here’s a refresher:
-Dr. Sacchini - surgeon
-Dr. Seidman - oncologist
-Dr. McCarthy - plastic surgeon
I saw Dr. Sacchini this morning for post-op and he was very pleased with the pathology result and how well I’m healing thus far. I don’t have to see him again for a full year. I have a bit of discomfort under my arms with some scar tissue-esque swelling and lumps, but otherwise I can’t really complain. The final 2 drains came out on Friday and it was so amazing to have those gone. I have started overhead stretches to regain that muscle movement little by little. You don’t realize how much you use your arms until you can’t! They say by 4 weeks post-surgery I should be able to keep my arms above my head without pain, which is especially important for radiation. Which leads to the obvious follow up question, do I need radiation? Short answer is yes, I probably still do, because while my post-chemo tissue was basically clear, pre-chemo it was all a hot mess in there so the radiation is an extra safety step. However, Dr. Sacchini mentioned that there is a clinical trial for post-surgery radiation that I may be able to be part of. I have a consultation scheduled on Friday with a radiation oncologist so I’ll find out more then. That meeting, coupled with my appointment with Dr. Seidman next Monday, will ultimately confirm next steps. Besides potential radiation, Dr. Sacchini said I likely won’t need any additional treatment (such as that chemo pill) since my chemo response was so great. If I do need radiation, so be it. I’d obviously prefer not but I’ve already been through the worst of this journey so go ahead, hit me with your laser beams if that’s what’s required of me. I am intrigued by the potential trial but I will do whatever they think is best. I particularly want Dr. Seidman’s opinion - he’s the reason why I went to Sloan in the first place and I have full trust in his treatment plans since clearly they’ve worked so far!
Today I also got my first fill - talk about the weirdest feeling ever (besides the drain removal, that was awfully strange too). One of Dr. McCarthy’s nurses did the fill - they use a little magnetic device to find the port area of the tissue expander under my skin, mark it, and insert a needle which I don’t feel at all. Then they use the world’s largest syringes of saline to fill the expanders little by little. In surgery, the expanders were pre-filled with 180cc’s of saline, and today I got an additional 60cc’s. I’d say I’m at a full A-cup size at this point.
That’s all for now! I’ll know more in the coming few days about official next steps and when those would start. Until then, I’m reveling in this moment that I have no cancer inside my body anymore!
July 29, 2019
Hi all!
Quick update - today was / still is a rollercoaster. Short version of the negative side of the story is that yesterday I noticed some redness/swelling under my right armpit and towards my back. It was worse when I woke up so I came into the city early to go to my plastic surgeon’s office in hopes they could check me out. The nurses said it is an infection and prescribed antibiotics, no biggie, so I headed to the other Sloan office for my previously scheduled follow up with Dr. Seidman. This was about 4 hours after I saw the plastics nurse, and in that timeframe the redness and swelling got worse. They decided to admit me to the urgent care center for IV antibiotics and observation to kick it faster. They think it’s cellulitis, which is apparently a relatively common occurrence with patients (I guess that is supposed to make me feel better haha). So now I’m here overnight... watching The Bachelorette finale! I’ve had one dose of the antibiotics, the second will be around 1am and another around 9am. Then they’ll see how I did and hopefully send me home with a standard 10 day pill antibiotic. Will keep everyone posted!
On a positive note, as you may have seen I was *officially* told that I had a pathologically complete response to chemo! While I did have that 1mm spot, Dr. Seidman basically doesn’t care about it since it was non-invasive and essentially not even cancer. Kind of pre-cancer. So this means I definitely will not need the oral chemo pill. Hooray! However, I did confirm that I need radiation for 5 weeks, Mon-Fri. I’ll start around the end of August. I met my radiation oncologist on Friday and he seems fine! I’ll see him once per week during the treatment. The final decision to do radiation is basically because there is not enough evidence in the world yet proving that I shouldn’t. At my age, and with my initial diagnosis, it’s just the right (and least risky) choice. So, another chapter begins!
July 30, 2019
Hi everyone. Unfortunately, today I didn’t really feel very well all day, and I still have quite a bit of swelling, so they are going to keep me overnight again. I’m feeling very defeated and ultimately frustrated. But it is what it is and hopefully this will kick it. My hands and wrists are beat to shit from them trying to find veins for blood work and IVs, so please, please, please text or call Dave instead of me if you want any updates today. Sorry, no humor this time!
August 1, 2019
Writing to you FROM HOME. I ended up staying TWO nights at the hospital getting the antibiotics.
They upgraded me from the observation area to the literal fanciest hospital room I have ever been in. It was like a hotel, but covered by my insurance :) I am on the mend and everything looks much better. They prescribed me 10 days of antibiotics and to just continue to diligently monitor myself and report anything that looks funky.
I wasn't able to get a fill this week but they don't think that will change my overall timeline before radiation. I'd like to say that I am going to take it easy these next few days but ALAS, that is not in my nature. The Marzullo fam is headed to a Yankees/Red Sox game tomorrow night, and this Saturday the Jablon clan is heading to a family wedding (which thankfully is just 10 min from my house!). And then back to work Monday!
I'll be working from home the first few days just to get back into the swing of things. It's been a long, long 4 weeks since the surgery but the indent in my couch needs a break.
August 8, 2019
Hi all. Thought I’d share a little update today.
I went back to work on Monday and it has been great to be back in the swing of things and feel normal! I’ve been taking my antibiotics since leaving the hospital last week, and I went in this afternoon for what was supposed to be my second fill of the expanders. Unfortunately Dr. McCarthy thought I still looked a bit too red. She’s not wrong, I am still a little red in a couple spots, but I assumed since it is a lot better than it was that meant I was good to go. Alas, she is very conservative, and she decided that she didn’t want to give me a fill today.
I finish my antibiotics tomorrow and will need to diligently check myself throughout the weekend to see if the redness spreads. If it does, I have to call them right away and likely go back in for IV antibiotics again (a different, stronger kind). Hopefully that is not the case, but I understand her caution. If I do need more antibiotics and those for some reason don’t work either, they may have to take the implant out (aka surgery) but we’re all hoping that’s not necessary.
At this point I’m pretty behind on where I need to/would like to be size-wise before radiation starts so they need to act quickly and communicate with each other accordingly since the infection is on the side I need radiation on (of course!). Otherwise, she’s happy with how everything looks and healed. But, this is very frustrating. I feel like I can’t catch a break where I have a clear week but, as I always say, it is what it is. I’ll keep everyone in the loop!
August 25, 2019
Hi all! Sorry for the lack of blogging - I didn't realize it had been over two weeks! That being said, I haven't really had much of a real update to share - just been trying to live my regular life again, back to "normal" routines and busy weekend schedules. I have my energy back pretty much completely now and my brain is really clear. I'm gaining strength and mobility in my arms and shoulders, albeit extremely slowly. My range of motion is pretty decent, I'd say, but my flabby arms need some toning! The infection went away and I've had 3 total fills. This past week marked 6 weeks from surgery (time flew!) and I am now cleared for regular lifting, exercise, and submerging in water like baths or pools etc. as well as the treadmill exercises 3x per week again with the exercise physiology team. That will go through December and then they will take the treadmill back from me.
The only random "side effect" I've had recently is that my nails have little white spots, and my pointer finger nail lifted a bit so it is fully white. I was surprised this happened 10 weeks post-chemo but some of my fellow 'breasties' said this was fairly normal. I will see Dr. McCarthy this coming Tuesday and she'll determine if I need/should get 1-2 more fills before radiation starts. At this point I assume I won't start radiation until the second week of September. Oddly, no one has really followed up with me on getting started.... but I of course am on top of things.
Only other exciting update is that I have a full head of hair! I had been rocking a head scarf since going back to work earlier this month but I debuted the new 'do at a wedding this weekend and a stranger complimented me saying she loved my hair. So I guess I look decent baldish (and also a lot like the Jablon's OHH SICK BURN DAD)
September 5, 2019
Hi all! I am finally done with the fills, and at my final size. These "boobs" are uncomfortable, to say the least. They literally don't move, and they are hard hard hard. I guess I am a back sleeper now because that's about the only thing I can do comfortably. I had two fills last week so I was quite sore over the weekend. All of my doctors have said that I healed really well (besides that fun infection). The scars are there, but there's no point in trying anything to make them lighter because Dr. McCarthy will go back through those same scars in the spring when she swaps these expanders out for the implants. Until then I just have to monitor for any signs of infection etc. I'm glad to be done with it!
Last week I met with my radiation oncologist Dr. Romesser and he's having me try a couple unique things over the next 5 weeks through treatment. One is that he wants me to hold my breath during radiation for 30 seconds or so at a time. What that does is inflates my lungs (obviously) to move my heart over and makes the lung tissue less dense, which ultimately means the lung tissue will be less sensitive to radiation. During my radiation mapping on Friday, they took two scans - one with regular breathing and one holding my breath. Dr. Romesser will analyze and determine if holding my breath will make a positive difference. In some people it doesn't do very much, so no sense in making you hold your breath for no reason. I'll find out for sure next week. During the mapping I also got 4 teeny tiny tattoos that look like beauty marks - they use those to line up the radiation beams precisely. The tattoos are permanent but unless I point them out you really can't see them.
The second thing he is having me try is called Mepitel film. It's essentially a plastic sheet with a sticky backing that I will wear 24/7 throughout all 5 weeks of treatment. Nurses will change it once per week. Studies were done using this in Australia and showed almost 95% reduction in the skin reactions. It hasn't been widely used in the US yet, but Dr. Romesser has used it on a number of his patients with great success. The catch is that I am the first person he is trying it on who has had reconstruction done. So I feel like a bit of a guinea pig but it sounds really promising that I'll be able to avoid radiation burns or worse reactions.
I officially start radiation next Wed., going every weekday through Oct. 15 for 25 total treatments. I'll see Dr. Romesser every Friday during that time for a check-in.
And that is the latest!