March 25, 2019
Hello! Chemo #5 in total / #1 of phase 2 complete! It was a long day - we didn’t get home until 5pm.
They took some additional blood work this morning to make sure all my kidney and liver levels were appropriate in addition to my CPC blood counts.
I met with Dr. Seidman and he said that if he didn’t know where my mass originally was, he wouldn’t have felt it. There’s just a small nodule left.
He also said that I typically should have felt at my worst of the entire process last week after completing the AC.... well, knock on all the wood because I felt absolutely fine. With that said, I should fair pretty well over these next 12 weekly sessions.
Chemo was definitely longer today. We were delayed about an hour as they had to wait on the blood test results. All looked good so we packed house into the room- today I was joined by my parents and brother, Dave’s mom and of course Dave. The nurses were not thrilled with all the extra chairs I needed! They started me on the steroids and Benadryl/Pepcid combo. The Benadryl, which is administered to ensure that I do not have an allergic reaction to the Taxol (which could happen but likely won’t), put me to sleep through the first hour of chemo. I’m glad I was asleep because they also iced my fingers and toes for that hour and it wasn’t pleasant. Not terrible, but not fun either! Then onto the carboplatin which was fine. More nausea medicine, which definitely annoys my veins while it’s happening. They get painful in my forearm but it goes away pretty quickly. And then we were done! No steroid pills or Neulasta patch for this phase. I need to drink a lotttttt of water and keep my immune system in tip top shape to avoid getting sick or potentially having to skip sessions.
Visibly, I am definitely starting to lose my eyelashes and a little bit in my brows. I’m trying to avoid makeup but I’m starting to feel like I actually LOOK sick. I feel fine, and with the wig on I think it is less noticeable, but I definitely think I “look” like a cancer patient now. It is what it is. I mean, they are pumping poison through me! I just need to get good at filling in my eyebrows
Today I was able to eat during treatment - think I should tweet this to Chipotle?
Talk to you all soon!
April 1, 2019
Woop woop - chemo #6 complete! I didn't want to lift my arm to hold up 6 fingers so we're going digital.
All in all today and last week were really uneventful on the cancer front. Today was just taxol, and it was my first session in Westchester. The Westchester MSK is stunning, and it's only a 15 min drive from our house, so a major win there. I slept heavily again from the Benadryl which is perfectly fine with me. I'll go to the Westchester location next week too, and then will be back in the city on the 15th to see the oncologist and do the carbo/taxol combo.
This coming week I am stepping out of my cancer comfort zone a bit and attending a few breast cancer related events. Tomorrow, I am participating in a yoga-esque class with The Breasties, which is a group of young survivors/pre-vivors/caregivers etc. based locally. I'm looking forward to meeting some of these young women in person who I have had a chance to communicate with via social media and otherwise. It is a welcoming group and they put on some really great meet-ups and events so I am looking forward to being part of that. Then on Wednesday, I got a free ticket to the 5 Under 40 Gala. The 5 Under 40 group was started by - you guessed it - 5 women under 40 who were diagnosed with breast cancer. It is an invitation-only group, and I was peer-matched to someone my age who I've been speaking with via phone/email. I wasn't planning on buying a ticket to the gala, but late last week someone generously donated tickets to the group so I figured why not! The emcee is Amy Robach from Good Morning America and they are honoring Kate Walsh from Grey's Anatomy/Private Practice. Plus I heard there are some sweet goodie bags and everyone knows I love freebies
Now the BIG news here has to do with my beloved New York Mets. I don't want to jinx things - but here is the story: Last week, Noah Syndergaard (our starting pitcher) tweeted that he'd answer fan questions while he was waiting for a flight. I tweeted him that if he's ever free on a Monday, he should come to Sloan and hang with me during chemo, and that I was planning to go to the April 6th game. Well, the Mets saw my tweet and said they wanted to send me a care package. How sweet, right?
Well it gets better... a couple days later, the Mets sent me a private message saying they'd like to hand deliver the package to me at the game and.... invite me on the field for batting practice!!!!!! I am waiting on the details but I am so stoked for the opportunity and will definitely keep everyone posted!
April 8, 2019
Chemo #7 in the books. Only 9 left - single digits! I developed a little hand and foot rash, it's nothing major but it's annoying and itchy. They also lowered my Benadryl dosage since I wasn't having any allergic reaction. It still knocks me out even at half the dose, which is actually great because I don't notice my icy hands and toes! Shout out Aunt Patti for coming up to Westchester today and hanging with Dave while I snoozed in the chair.
Now to the important stuff - all of the breast events last week!
On Tuesday, I went to a yoga class with The Breasties. I had one 'friend' going as well so we traveled there together, but upon arrival it was clear that a lot of these women have known each other for awhile. Very cliquey. The other thing that kind of bothered me was - and I don't mean to diminish other people's stories or journeys - but I would say at least half of the people or more in this group are 'pre-vivors,' as in, they had the BRCA gene and preventatively chose to have mastectomies with reconstruction to drastically reduce their chances of getting breast cancer. Don't get me wrong, if I was someone in that boat maybe I'd choose to do the same thing. But... they don't have cancer. They likely won't ever have cancer. They have not gone through what I am going through. So, I didn't really feel like it was the best group for me. And that's perfectly ok. I met the one girl and I have her as a resource - as someone who has just gone through the exact treatment that I have - and that's good enough for me. Not sure if I'll go to another one of their meet-ups, we'll see. Spot me in the group photo - I'm the only bald person with a cap on!
Wednesday was the 5 Under 40 gala. Now THIS was a swanky event. Holler at Brianna for picking beautiful bridesmaid dresses because that's what I wore to this and it was perfect I have a 'peer match' in this group, again someone who has gone through what I have, and we met in person for the first time and she was the nicest. Introduced me to ALL survivors in the group at my table. The thing about 5 Under 40 is it is about survival, so most of the women have had cancer. It was so empowering, being in a room full of supportive, strong, and beautiful women. I immediately felt a connection to this group. There were about 350 people at this event, and they called every 'recipient' on stage to show the magnitude and importance of the evening. Spot my super blonde wig and I on the far right! This was a fundraiser, so they held live and silent auctions to raise money for recipients to cover things like wigs, therapy, and sometimes even mammograms or treatment needs. I'm looking forward to staying in touch with the women I met here and possibly getting more involved.
Ok now, the fun stuff - The Mets! I think everyone saw the pics I posted so there are a few new ones here.
On Saturday morning we all arrived at the stadium at 10am and met Tony, the coordinator of external affairs. We were all fast friends with Tony! He gave us swag bags with t-shirts and schedule magnets and then we went to the field to wait for batting practice to start. I've never been on the field before but Tony's entire job was essentially to make me feel like a celeb for the day and he really did that. I first met Mickey Callaway, our manager, and he signed a baseball for me. Then our new GM Brodie Van Wagenen came out and we had probably a 10 min conversation about breast cancer and The Mets and how I'm a huge fan etc. He said - and he really meant it - that we can come to any games we want, just ask. I feel awkward ever doing that, so someone has to push me to use the 'cancer card' again haha.
The social media team followed us around all day, and after we met a few players who signed my PERSONALIZED Marzullo jersey (Brandon Nimmo, Pete Alonso, Luis Guillorme, JD Davis, Jeff McNeil), we went to the press conference room where I was interviewed by the social team. They are going to make a video all about me and how my one tweet turned into this day at the stadium - a little bit of a humble brag on their end, since they are the ones who tweeted me back and came up with this whole day for me - but regardless, I think they see the importance of telling real fan stories and giving back where they can. Once the video is made, they are planning to post it on their social channels. So.... I guess that is when I will *officially* announce publicly into the stratosphere that I have breast cancer. I'll still plan to keep this group and these blog posts going, the group just may get a little bigger. Oh, and they upgraded our seats to behind the dugout and topped it off with a WIN.
So glad that Nicole, Megan, Bryce, Erica & Nat were able to enjoy the day with me as well! My own Breasties.
Back to a normal week, and we're looking forward to a little weekend getaway to celebrate the wedding of Carly & Erick in Newport, RI on Saturday!
April 15, 2019
Hi all! Chemo #8 of 16 done today, halfway there! Not timewise, but treatment wise.
Either way, my blood levels and counts have been good so everyone please keep your fingers crossed for that June 10th end date to stick.
As I'm sure you all have seen (but if not: https://www.youtube.com/watch?v=zqK-GYjDUc4) I officially went public with my breast cancer diagnosis with the help of the Mets on Friday. The outpouring of support was overwhelming, and I'm glad that it's out there now. Not like enough people didn't already know, but if I can educate one person or convince one person to get that random ailment that they have checked out, then my story has done its job. That being said, having the Mets make the announcement was the all time coolest thing that will ever happen to me, for sure. I've got Sloan on board now too, and they are planning to push the video on their social platforms next weekend.
This past Saturday, wiggy went to her first wedding! Congrats again to Carly Henderson and Erick, it was a beautiful day despite the foggy weather and now we know the wig can handle a dance floor. Doesn't QUITE make up for the fact that I couldn't have a drink (whyyyyyy!?) but hey, soon enough.
I am thinking of putting together a team for the Making Strides for Breast Cancer walk in Central Park on October 20th. Poll below - should I or shouldn't I? Would you be able to join that weekend? I'm tossed between the Westchester or Central Park walk as they are on the same day, but I think more people would be able to make it if I did Central Park.
Today during chemo, we watched the terrible news about Notre Dame in Paris. Dave and I traveled to Paris during our honeymoon almost 4 years ago - which was my first trip abroad - and remarked at its beauty. Posting a throwback photo to skinnier, sunnier, travelier days.
I also picked up a baseball hat wig last week. The wig is basically attached to the hat with netting. It’s very fake. And very shiny. And VERY blonde. But it works for the days I’m washing my real wig or don’t feel like wearing that on the weekends.
And shout out to Maria Marzullo and my mother in law Sue for joining today - and a celeb drop in from Stephen. Maria came straight from her first big-girl job interview to my chemo session. Can't believe she'll be graduating from Rutgers next month - when we first met, she was just about to turn TWELVE YEARS OLD! Everyone send her your good vibes!
April 22, 2019
Hi all! Chemo #9 in the books. Over the halfway point!!!! Today the chemo nurse for the first time gave me a hint towards getting the port put in... unfortunately since the chemo is so hard on my veins, they are starting to harden or “disappear.” The good veins from my wrists basically went away, and some of the others in my arms you can feel that they are kinda hard. She had no trouble using my hand again, so there’s still hope I don’t need the port. But it’s definitely a little upsetting. I knew this could happen, but I REALLY want to avoid another surgery and multiple scars. I’m over the halfway point so it’s possible I’ll be fine but we’ll see at the next one.
Otherwise, this past week was pretty uneventful. The hand and foot rash has gone away. I am having a little discomfort in my armpit again. I am hoping it’s just me getting in my head but if it lasts a few days I’ll say something. Last week the RN said to give them a heads up if any ailments last a week.
On a random positive note, my entire body is now hairless and thus VERY soft. Like baby’s butt soft. So if I randomly tell you to touch my face, that’s why I’ve still got some eyebrows and eyelashes hanging on - but they need some love. Thankful for makeup!
Now that my diagnosis is public in the social stratosphere, I feel like I can share more of my day to day instead of being so radio silent. That being said, I don’t have much that is interesting to share so the bulk of my updates will still go here, however you’re more than welcome to follow me on Instagram @lisammarzullo as well, as I have posted a couple things to my stories. Tomorrow I move to the new Hudson Yards building for work so maybe I’ll post some new views!
Ta-ta for now.
April 23, 2019
SOS! My mom and I need a team name for the Making Strides Walk. Something punny or cheeky. Any suggestions? I would make a poll but I don't even have any good ideas to start with... Lisa's Lady Lumps? Jabzullo Boobs? HELP!
April 29, 2019
Happy Monday. Today's chemo was a double whammy of significance, as it marked #10 aka WE HIT DOUBLE DIGITS Y'ALL, andddd also marked the official halfway point of the taxol/carbo in Phase 2. Cruising right along! Pictured here are 10 of my icy fingers to celebrate (plus 10 icy toes, not pictured, but equally cold). Asked Dave what happened in the past week to share, and he wants me to say that we have ants in the house. Don't worry, we've sprayed. ANYWHO!
Let's talk about pain. I've had some 'discomfort' as I'd rather refer to it, as I also mentioned in last week's post. Overall, very achy in my chest and shoulders. I've mentioned it to my chemo nurses and I was going to reach out to my oncologist, but today we had a really great and informative chemo nurse who explained why this happens - SCIENCE LESSON! The Carboplatin stays in my system for the full three weeks between each session. In that timeframe, because chemotherapy kills bad cells AND good cells, my blood counts are lower. Normally, a regular person's bone marrow, in their bones, uses stem cells to create new blood cells. My counts are lowered because of the Carboplatin, and then the Taxol on the off-weeks isn't helping that situation.... hence the bone and muscle pain. SCIENCE LESSON COMPLETE. Also, the chemo nurse's name is Theory so she is infinitely cooler than I'll ever be.
As far as the possibility of the port, Theory also shared a theory with us (sorry, I had to!). First of all, she had no problem getting a vein and said I had a couple she could have used. So the little arm and hand exercises I started last week maybe helped. BUT what she did say was that I should eat a can of Chicken Noodle soup before chemo, which will ensure I have good sodium levels before the drug is administered. You need sodium for electrolyte balance and to ensure I'm not over-watering/diluting my blood since I've been drinking a ton of water. SO soup for breakfast it is!
Now let's talk about anxiety. I actually had 8 free therapy sessions through my insurance, but after using 7 of them I wasn't really feeling like she was 'helping.' Although from the get-go, I didn't think I needed any 'help.' I am very self aware; I know what's going on. I just figured heck, it's free, I'll use them. I would classify my anxiety as self-induced, in that I get sucked into what I like to call Instagram wormholes about breast cancer and of course, as with most things on the internet, most people share their shitty stories vs. talking about how everything was fine after they finished their treatment etc. Needless to say, I've gotten a bit in my head over the last week or so, especially with the discomfort I've been having. But today the chemo nurse really helped me by explaining things a bit more and talking me off that little ledge I was on.
Other random side effect notes:
- Eyebrows - barely hanging on. Poor little guys.
- Eyelashes, ditto.
- Hair on my head - Dave thinks my peach fuzz is getting longer, I disagree.
- Nails - seem to be fine so far.
-Hand and foot rash - Basically gone, phew!
Steroids are causing me to have some trouble sleeping, so I've eliminated coffee. Trying to stick to decaf because it's really for the taste, for me. Steroids are also causing my fingers to swell a bit (or maybe it is the fact that it causes an increased appetite so I've gained weight boooooo), so I've had to retire my beautiful wedding rings for the time being.
I also wanted to say a sincere thank you to everyone who has donated to our walk this fall. To be honest, I linked my Facebook to the Making Strides app but did not know it was going to auto-post that second. So the fact that we already almost have $1000 as a team is so so so amazing. My mom and I would love to see you all there on Sunday, October 20th, but your support of cancer research is an added bonus
Lastly, GO SEE AVENGERS! Dave and I went tonight - and successfully held our pee for 3+ hours.
May 7, 2019
Hi all! Sorry I’m a day late to post my weekly chemo recap. Honestly I’ve been feeling a little off. I’m allowed to! Now that I can count on one hand how many chemo sessions I have left (FIVE!?!?) it’s starting to get real.
Most people have their surgeries first and then do chemo, but because of my triple negative type, I had to do the opposite. Which means I’m really only halfway through this battle once chemo ends. I still have to endure a major surgery, recovery, reconstruction, likely radiation, and THEN an exchange to implants. This journey is long and daunting. Every ailment I have no matter how small, I think is a direct correlation to my cancer. Yesterday I finally saw my oncologist Dr. Seidman after 6 weeks. He said that it’s HIGHLY unlikely that anything would be spreading while on chemo. So little aches and pains, I shouldn’t worry about. He actually gave me a hug yesterday. Usually I’m chipper and upbeat but I think he could tell that I wasn’t feeling myself.
Chemo was long yesterday as it was a carbo/taxol combo in the city. We used a hand vein which is normally fine but this time I had some pain. I powered through but it was uncomfortable. I told Dr. Seidman that one of the westchester nurses suggested the port, and he literally threw up his middle finger and said “Us city folk don’t need a port, YOURE GOOD.” Soooo I guess he’s confident my veins are fine. The little veins that could!
Sorry to be a Debbie downer! Let’s move on
I’m SO thankful and grateful to everyone for donating to our Making Strides walk. We’re already the #4 team for the Central Park walk! And I didn’t even MEAN to post it yet... so clearly, I have the best support group out there. Please join the team if you haven’t yet, and mark your calendars for Sunday October 20th. If you can’t make it, there are walks all over the country that week! Kate Llanos offered to help make the shirts and/or sweaters with her cool printing machine so let’s make her do the most ever and get a huge walking group going!
Also, it was a friendapalooza at chemo yesterday, shout out to Julia (who said the lighting made me look good in my pic but gurl, I have no brows, lighting doesn’t help haha), Brianna AND baby Carson who was a perfect angel baby, Kristyn and Dan, and of course Dave.
Did I mention I have only FIVE sessions left?! Gah!!
May 13, 2019
12 down, 4 to go - the chemo finish line is so close! I look like a bobblehead in this photo because they covered me in a warm blanket and I had already gotten the Benadryl, so I was READY for my nap!
Today I had treatment at 5:30pm, instead of my normal morning treatment. At first I was annoyed and tried to change the time, but Nicole and Erica were able to hang with us for the whole day and I was able to get some work done and relax a little, so ultimately it wasn't that bad. And I had more time to drink tons and tons of water and eat lots of salty food in preparation for #veingate
My chemo nurse today was Lisa - who was shocked to meet me, a younger Lisa. There aren't many young Lisa's out there in the world these days! Lisa, however, was not up to the vein challenge so she called in some help from Rita. Rita was also not pleased with my lack of veins, but thankfully she had no problem getting one in my hand on the first try. The little veins that could are doing me proud! Chemo was uneventful, as usual.
The only other major news in the past week is that my MRI and mammogram have been moved up to the end of June instead of mid-July. So that means less waiting time in between and less anxiety about what is to come, as I will now meet with the surgeon on June 26th. Also, my Memorial Day treatment was pushed to that Wednesday because the breast center is closed for the holiday, but I am trying to confirm if that will push my final two chemos off by two days each too. I've been saying June 10th over and over again as my final treatment day so I'm hoping I can keep it (even though June 12th wouldn't be the worst, I guess!)
I've also scheduled my mid-point treadmill assessment for the week after chemo ends. In the assessment, they'll do a resting EKG, and then hook me up to all the heart rate and breathing machines and push me to my max, and then check my heart again. I'm powering through the fatigue and achiness in the name of science, even if that means complaining every time to the physiologist :)
Until next time, if someone wants to explain to me why I'm still wearing a winter coat in May that'd be great... seasonal depression + chemo is NOT a cocktail that I am particularly enjoying right now! WHERE IS THE SUN!?
May 20, 2019
THIRTEEN CHEMOS DONE. wuttttt.
Today.... was not great. I ate my chicken noodle soup. I drank what I thought was a ton of water this weekend. Had high hopes for cooperative veins. But unfortunately they couldn’t get me on the first try and I immediately went into panic mode. Idk why. Probably because it was the first time this has happened since the VERY first chemo. I have two arms, I knew they would be able to try again (which they did, successfully). But I just froze, and cried. I wasn’t lying when I said these last few weeks have been the hardest so far, mentally. I feel like chemo brain is REAL. Fatigue is REAL. Energy levels are super low. And I’m just so ready for this to be over that the thought of possibly not having chemo today because of a lack of good veins sent me overboard into a sea of emotions. But I recovered - and I had chemo. And I’m one step closer to the finish line and that feels wayyyy better. There are only 3 left!
Otherwise things were uneventful this week on the cancer front. Today the nurse mentioned that despite my instincts to go sit in the sun finally, I have to make sure to wear at least SPF 15 at all times and can’t be in direct sunlight for more than 15 minutes or I am at risk for a chemical sun burn, which does not sound fun. I meant to ask how long that side effect is in place because all I want to do is get some sun on this pale skin!! My next blog post for chemo #14 (the last carbo!) will be a bit delayed since it is scheduled for next Wednesday instead of Monday due to the holiday.
I want to give a shoutout and thank you to my boss Ashok for his extremely generous donation to our walk in October. We’ve bumped up to team #3 overall! Once my brain is back to normal I’ll think of some other fun ways to fundraise. I also finally got to spend some quality time last week with Miss Kaitlin Lindsey who was in NY from Cali. A fellow “breastie” at Turner who has had the craziest journey the past couple years but THE most positive spirit. You are a warrior and I’m so thankful our jobs brought us together!
Also the Mets won today, all thanks to my new hat from Brittney OBVIOUSLY. Bobblehead Lisa is clearly hear to stay (or it’s just Dave’s photo “skills”....)
In more exciting news, my Mom and I are seeing PINK tomorrow night at MSG, AND Maria officially graduated from Rutgers yesterday and will be working in the same building and company as me starting in June. Woo!
Hope everyone enjoys the long weekend ahead!
May 27, 2019
Hi everyone! #14 is done?! Wow. ONLY.TWO.LEFT.
Today was my last carbo/taxol combo day. It was in the afternoon so we didn't have to rush into the city which was nice. I've gained some weightttttt since starting this whole process. I hadn't been weighed in 3 weeks and it wasn't pretty lol. Hopefully it comes off quickly post steroids (typing this as I eat a fudge pop... it's organic so LAY OFF ME!) Hence this terrible photo.
We met with Odessa the RN today (instead of Dr. Seidman, who we'll see on the final chemo day) and I explained some of the weird pains I have been having. One in my arm, which kind of feels like a rubber band is being stretched and needs to break. Also I have what feels like a "bruise" on my ribs right under the wire of my bra. Neither are that bad, but worth mentioning. Odessa said - essentially - stop worrying, no big deal right now. But she also said they typically recommend NOT wearing bras with underwire during treatment since they are irritating. LOL, Odessa, you are funny.... Otherwise all is good!
The next phase - besides the upcoming MRI and mammogram - is to schedule a consult with a plastic surgeon. I got a few recommendations from girls I've met that went to Sloan, but Odessa said she'd first recommend that Dr. Sacchini shares his go-to plastics people first for the consult.
There are so many possibilities, so it is important that I feel comfortable with the plastic surgeon and their plan. Ultimately, this person has the control as to how I'll visibly look after all this is done!
It sounds like surgery is typically scheduled right at one month post-chemo, so that looks like the week after July 4th. Which is great, as it gives me an entire month to recover before our season of weddings begins (#priorities!) On the down side, I probably won't see a beach this summer. Womp. Also Odessa said she agrees that I'll likely need radiation, but ultimately that is unknown until they see the results of the MRI and pathology from surgery. I'll schedule a follow up with Dr. Seidman about 2 weeks post-surgery.
As far as chemo today, the nurse couldn't get my vein on the first try again... but I was prepared for it, and did NOT cry this time I actually pointed out a juicy-looking vein on top of my left hand, which he was able to use successfully. I was hoping that the extra two days in between infusions plus all the water I was trying to force down this weekend would have helped - who knows if it was him or me. But either way, I only have two left so the port is officially unnecessary!
Special shout out to my Aunt Michele who came with us today.
She also spent some quality time with Oliver the therapy dog -- I never see the dogs but I found out it is because they only come in on Wednesdays, and OF COURSE I was meeting with Odessa when Oliver came around so I missed him
And an extra shout out to Mike Margolis for the surprise visit! You are a gem.
June 4, 2019
Hello hello on this fine Tuesday. Today was chemo #15 and if you're counting down like I am, then you'll also realize that I only have ONE chemo left aka 6 days aka HOLY CRAP!
Today was my last chemo in Westchester. The nurse wrapped my arms like burritos in the warm blankets, which was a first and thus warranted a photo opp. I prepped her by sharing that my arm veins are shot and pointed out the very specific vein on my right hand that - due to my knowledge of my veins at this point - she should definitely go to first. But, she did not listen, and she thought that my arm would be better. Wouldn't ya know it, it DIDN'T WORK. So she went to the hand vein that I chose which, wouldn't ya know it, WORKED PERFECTLY. She actually said she typically does not listen to patients (which I get but also chill lady) but admitted that this time she was wrong. Third week in a row that this has happened, but not a big deal because... I HAVE ONE.CHEMO.LEFT.
Other than that this week has been pretty quiet. I am in the process of getting my consult scheduled with the plastic surgeon (PS). AKA the person who is going to be solely responsible for what the *girls* look like for, ohh, the rest of my life. I had gotten a few PS recommendations from fellow Sloan patients but unfortunately, my surgeon (Dr. Sacchini, the man with hands like butter) does not have a schedule that lines up with those names. So, I'm meeting with a PS that he performs surgery with very frequently. I definitely want to get a good 'feel' for him (that's a boob pun!). That should hopefully happen soon and I've requested a TENTATIVE surgery date of July 9th. That date is ideal as it is right after the holiday and far enough away from August when our wedding season kicks in. I've put in short term leave for the full month of July. I'm definitely a bit anxious to be done and for the surgery of course but also I cannot WAIT.
To prep for surgery, Dave and I made a big purchase today - a king size bed with an adjustable platform! We've been wanting a king size bed for awhile, and after my surgery I'll pretty much need to sleep upright for at least a few weeks and then on my back for the foreseeable future. So rather than buy or rent a clunky recliner for the den, I'll be able to sleep in the comforts of our brand new Casper hybrid mattress. An extra plus, we're moving our old bed into one of the spare rooms so now we will have 3 queen size bedrooms for guests (one is in the basement but I promise it's perfectly fine and not creepy down there).
At this point, I'm definitely feeling very fatigued. Over the weekend, we were celebrating Anthony Stevens 30th birthday in Syracuse and rented a super silly 7-person bike to ride, which was hilariously fun. However, I definitely exerted too much energy and promptly felt like crap, which led to an hour nap followed by a solid 13 hours of sleep. Sleep is GREAT, but I also want to live my life. I just need to understand balance and really listen to my body. When I'm tired, sleep. Done.
I'm also starting to show signs of neuropathy. Neuropathy essentially is the feeling that your fingers and toes are numb. It's not fun, and it CAN be permanent. Right now it is pretty isolated to my pinky fingers and a little on my ring fingers, so I'm trying to massage them and do hand exercises to alleviate. The icing of my fingers and toes is more to protect my nails than for the neuropathy, unfortunately. No way of knowing if the neuropathy will be permanent or not at this point but I'm hoping not!
Lots to look forward to this weekend leading into my final chemo. Alyssa and Matt Hughes are making a 12-hour trek up from North Carolina to spend the weekend with us! And after chemo on Monday, my family is going to see the Subway Series - which was totally coincidental that we bought tickets on what would become my final day of chemo. TTYL!
June 10, 2019
CHEMO. IS. DONE!!!
I am so stoked. Waves of emotions for sure, but ultimately thrilled to close this chapter.
Today, I identified a couple hand veins that I thought looked pretty good for the nurse, and she agreed. She spent awhile prepping them with heating pads etc. to make sure they were going to work. While doing that, she let me know that I wouldn't need steroids any more - apparently, studies recently showed that as long as you did not having an allergic reaction after the first two treatments, then you didn't need steroids. The approval to remove the steroids officially happened last week, so alllllll this time I could have NOT had steroids, theoretically. I am looking forward to not having insomnia tonight!
Anywho, she attempted to use my hand veins but unfortunately, they were not cooperating. She called in some assistance and magically, a nice juicy vein appeared on my forearm. We had a packed house today with my parents and brother, and Alyssa and Matt with baby Camryn up from North Carolina. They rotated while I slept through treatment because there were too many people for the room. The second the alarm went off that I was finished, I was like GREAT, GET ME OUT OF THIS CHAIR!!!! A lot of you were asking if I'd ring a bell to signify the completion of chemo, but that doesn't exist at the breast center. No biggie, because my dad played one on his phone.
Then I met with Dr. Seidman for one final exam. He again confirmed that he could not feel the larger mass on top, and was really pleased with how well I reacted to the treatment. Ultimately at this point, to confirm the official next steps we have to wait on my scans which are happening next week. There are a lot of potential options. BEST case scenario is that I had a pathologically complete response to chemo, and won't need any additional treatment post-surgery. Options if I do have any residual cancer left include a pill form of chemo called Xeloda which I'd take for 6 months. This pill has fewer side effects (and my hair WILL grow back on it) and studies have shown that it reduced recurrence probabilities. Also radiation is a possibility, and I'll meet with a radiation oncologist to discuss that potential plan, which would be for 4-6 weeks every day for 15 minutes or so.
Regarding the surgery, today I also saw my surgeon Dr. Sacchini for a few minutes. I'll have a formal meeting with him on the 26th after my MRI and mammogram results come in, but today he actually mentioned that since I don't carry the BRCA gene (and if my scans look good) he'll look into a double lumpectomy or partial mastectomy as possibilities. I've been mentally ready for the full mastectomy (the double is my choice, I only need surgery on the right one) but if he and Dr. Seidman feel strongly about a less aggressive surgery, then I could be swayed.
Ultimately I don't want this to recur, as I never want to go through this again, so that will be my barometer to make the decision. It sounds like July 9th is going to be the date! Waiting on the official confirmation. I am also scheduling the plastics consult, and have a follow up appointment with Dr. Seidman for mid-July after surgery. Once they do the full pathology report post-surgery, Dr. Seidman can confirm next steps per the options mentioned above.
While there are still a lot of unknowns, I am feeling SUPER grateful to be done with this part of the process. I can't wait to have my energy back, to lose all this steroid weight, and for all my hair to grow in! Although, if my leg hair never came back that'd be totally fine with me, just saying.
We were supposed to celebrate at the Mets/Yankees game tonight but unfortunately it was postponed... and then of course it hasn't rained at all since they called it off. UGH!
Dave wrapped me like a cocoon and took this terrible pic to celebrate my last chemo. Way to go Dave.
I will continue to post blogs after every appointment - next week I have the midpoint test for my treadmill trial on Monday, and the MRI on Wednesday. Until then, I've been cleared to consume alcoholic beverages again and I could use a beer!!!