Mastectomy, 1

The days leading up to my mastectomy were filled with lots preparation and anxiety. It felt like the final weeks of pregnancy where the nesting takes over and you want everything to be perfect for the new baby’s arrival, although for me, there is no squishy newborn at the end of the tunnel. I made meal-plans for Aidan and Cooper, complete with diagrams for Aidan’s “What Aidan Ate” lunch boxes, cleaned and organized drawers that have been ignored for months, laid out outfits for A & C, packed a hospital bag for me and Matthew, making sure that everything was “ready”. 

The anxiety that I was feeling wasn’t about me, the physical pain I was about to experience or the loss of two pretty important body parts. It was more about what recovery would look like and how my household would run without me, the self-designated CEO of Angrist, Inc at the helm. I have complete faith in my amazing husband, but if you ask him to go find the boys’ socks, it may take him a long time to return. But, between Matt, all of the grandparents, and my amazing nanny, I had to believe that I was leaving the boys in capable hands.

Monday, October 21, Surgery Day

On Monday morning, Matt and I casually strolled up to NYU for 7:30am registration. Next, I had an 8am pre-surgery appointment with nuclear medicine. Throughout my treatment, my doctors were confident that the cancer had not spread to my lymph nodes, but we had no confirmation. During this appointment, the radiologist injected a radioactive dye next to my left nipple (yeah, it stung) in order to photograph the path that the dye moved through my breast until it got to my lymph nodes. It was really cool to watch on the screen as the dye moved through my body until it lit up when it hit the first node. This process identified the sentinel node, the first lymph node that would be affected by cancer. 

During my mastectomy, my surgeon would remove the sentinel node and check for cancer in real-time. If there is no indication of cancer in the sentinel node, then we can be sure that the cancer did not spread to my lymph nodes. If there is evidence of cancer in the sentinel node, the surgeon would remove the next nodes along the path until there is no evidence of cancer – fascinating stuff.

After the lymph node mapping was complete, I went up to the surgical floor to wait for my surgeons. I was brought into a pre-op waiting room to change into my surgical gown, brush my teeth (yup), sign consent forms and wait. I met with both my breast and plastic surgeons, they marked and signed my chest and then I said goodbye to Matt and my parents and walked into the operating room. 

The next thing I knew, I was waking up in the recovery room. I felt a heaviness and tightness in my chest but I wasn’t in any extraordinary pain. My arms felt very stiff at my sides. I could bend my arms at the elbow but could not lift my upper arms off of the bed. While waiting in recovery, my surgeons came in and shared the good news that everything went well and there was no evidence of cancer in my lymph nodes. Matt and I waited in the recovery room for a long time before being moved into my real hospital room. 

Once I (finally) got wheeled to my hospital room, I had to stand up to walk from the recovery bed to the hospital bed. After my two c-sections, standing up for the first time was the hardest part, so I was afraid for this moment. I needed help from Matthew and the nurses to push my back forward as I swung my legs over the side of the bed. I sat on the side of the bed for a few minutes to catch my breath as I started to feel a bit faint. Finally, with support, I took the few steps to my bed. I needed even more help to sit on the hospital bed and scoot to lean back to a comfortable position.

The physical side effects of this surgery are almost the opposite of my c-sections. During my c-sections, my lower stomach was cut, basically destroying my core and abs, causing me to rely on my upper body strength to move around. Once I was able to walk, I could use my arms to balance and when I was sitting down, I could use my arms to maneuver my body until I got comfortable. With my mastectomy, I cannot rely on my upper body strength at all. My chest and arm muscles are basically useless. I basically have to pretend that my arms don’t exist as I scoot around on my hips. Getting comfortable in a hospital bed was NOT easy. The biggest challenge is trying to sit up after laying down. 

That night in the hospital, Matt and I had Vezzo pizza for dinner. I was happy to have my full appetite back but Matt had to feed me each bite as I could not bring my hands to my mouth on my own. True love.

Once we got ready to go to sleep, I had a hard time staying in a comfortable position. I had to sleep on my back, in an elevated position but I kept sliding down in the bed and wasn’t able to scoot myself back up. I kept having to call for the nurse to help me get comfortable and always needed someone to help me get out of bed and come with me when I needed to use the bathroom. It was a long night.

Tuesday, October 22nd, Post-Op Day 1

Despite not getting a great night sleep, I actually woke feeling pretty rested. We spent a relaxing day in the hospital with a few visits from friends and family. Matt and I took walks around the hospital floor and didn’t really do much else. He worked and I laid in bed. 

Standard protocol for this surgery is to only spend one night in the hospital, which means that we would have gone home today. This boggles my mind as I was in no state to go home. I was still feeling very uncomfortable and needed a lot of support to move around. Having the doctors constantly checking to make sure that I was healing correctly was comforting. If I had gone home after just one night, I would definitely have felt more scared and anxious. Because of Aidan and Cooper, I was adamant from the start that I wanted to spend two nights in the hospital. I wanted that extra night in the hospital to recover a bit more before returning home to two rambunctious toddlers. The extra night in the hospital was very very necessary.

Wednesday, October 23rd, Post-Op Day 2

We woke up in the hospital and gathered up our things to get ready to go home. I was discharged, we took an Uber and got settled in at home. Immediately, it felt harder being at home than being in the hospital. In the hospital, I was isolated from real life and could just rest in bed without thinking about what was going on outside of the NYU walls. There were nurses ready and willing to help me with whatever I needed and I only had to worry about myself. At home, I spent the rest of the afternoon laying in bed, but it was hard knowing that A & C were playing in the other room and I couldn’t be there playing with them. Matt and my mom were there to help me, but I wanted them to focus their energy on the boys. I still couldn’t get in and out of bed by myself so I was feeling very dependent. 

Thursday, October 24th, Post-Op Day 3

Today I was determined to go for a walk. After my mom brought A & C to school, she helped me get out of bed and get dressed and we went for a walk outside. We got an iced coffee, sat outside for a few minutes, and then walked home. The whole outing took less than 30 minutes but it felt really nice to do something so normal. 

Friday, October 25th, Post-Op Day 4

It has been 4 days since my surgery and already I am slowly starting to feel back to normal. I still have many physical limitations, but as each day passes I am able to do a little bit more. Today, I got out of bed by myself for the first time which is HUGE win. Now I feel comfortable to be left alone at home and know that I can start to take care of myself.

Mastectomy Must-Haves

I am not a fussy person. I don’t usually buy into all of the things that you “need” to recover from surgery. When I went to the hospital to have Aidan and Cooper my hospital bag was pretty empty, and this surgery was no different BUT, there are a couple of items that have made recovery from this surgery more comfortable.

Button-Front Pajamas: Wearing a hospital gown is NOT pleasant and it is the quickest way to remind you that you are in a hospital. Bringing my own pajamas made me feel much more cozy, but it was still important for the doctors and nurses to have quick and easy access to my chest. Soft, button-front pajamas were the solution. Even at home, I still only wear button and zipper front tops as they are the easiest to put on and allow me to get to my chest. Linked here and here.

Wedge Pillow: After surgery, you have to sleep on your back, especially while the drains are in. Laying flat is not only uncomfortable, but much harder to maneuver from. The beds in the hospital can be lifted to find a comfortable position, but at home, the wedge pillow allows you to stay elevated and lay more comfortably.

Arm Pillows: While laying in bed, it would hurt when my arms were laying flat on the bed. Having a pillow to prop under each arm eliminated some of the pressure on my armpits.

Neck Pillow: While laying on the wedge pillow, the neck pillow allowed my neck to be elevated enough so that I did not have to put any strain on my chest muscles.

Cleansing Wipes & Loofah on a Stick: While my drains are in, I cannot take a full shower. I can take a sponge bath, but my range of motion is extremely limited. I can barely reach my arms up to scratch an itch on my face. This loofah helps me clean any hard-to-reach spots. I also use these body wipes and face wipes to help me stay as clean as possible.

Intentions

The most awkward part of my new look is having to respond when other people comment on it. In the past week alone, at least a dozen strangers have told me that they like my haircut. I have to decide pretty quickly if I am just going to smile and say thank you or if I want to explain the backstory of my short hair. I have responded in both ways depending on how much time I want to devote to a conversation with a stranger. It is nice that my hair has grown enough that it looks intentional, but it has made me think about times where I may have made comments to others that could have been insensitive to something that they were going through. 

I was put to the test this week when the mom of a former student, who obviously does not know that I have cancer, pointed out that my hair is short only to say that she, “liked it better before.” I could have snapped something like, “Well I just went through 14 rounds of chemotherapy and didn’t really have much choice” and gloated at her embarrassment, but what is the purpose in that? She OBVIOUSLY does not have any clue about the reason for my short hair. 

I have learned that it is in my best interest to assume that everyone has only good intentions. When people ask about my diagnosis, treatment, prognosis, hair style etc. there are so many opportunities for people to say the wrong thing. (And let’s be honest, what I think is right or wrong changes depending on my mood.) It is important for my own mental health to assume that every comment is coming from a good place. I cannot control what other people say, but I can control how I choose to let it make me feel. Throughout all of this, there have been so many situations where someone else’s words could have taken me to a dark place. Most of the time, I am able to take my own advice and not let other people’s words have an effect on me, sometimes I am not as strong as I would like to be and that is okay. 

I encourage everyone to ask me anything and I am always willing to share every unpleasant detail about what I am going through. With that, I open myself up to having conversations that may be upsetting and uncomfortable. I have chosen to be extremely open about everything that I am going through because I hope that it will encourage others to be proactive about their health and to show others who are in my situation that dealing with cancer doesn’t mean that your normal life has to stop. With the exception of an errant rude remark, it has served me well to believe that every question or comment is coming from a place of positivity, curiosity, and support. The best comment I’ve heard is that I’ll make a great Eleven from Stranger Things on Halloween 🙂

Owning my new look… kinda

By far, the hardest part of this entire cancer thing has been the changes to my physical appearance. Although I haven’t had any major emotional breakdowns, losing my hair really has been challenging. While I have almost gotten used to my new look, I still struggle when I’m getting ready to go out. I look in the mirror and it just feels like something is missing. I am happy that I have stopped wearing my wig, but I don’t love what I see when I look in the mirror. 

The only positive side effect of my super short hair is how quickly I am able to get ready. I used to plan my week around my blowout and now I can shower and be ready in minutes. Still, I would choose my worst hair day over my new cropped look.

On top of the hair loss, I have gained a decent amount of weight to the point where a lot of my clothes no longer fit. My doctors keep assuring me that the weight will be easy to lose once all of the drugs are out of my system, but I’m wary. 

There are a couple of different ways that I can choose to deal with this. I can fall apart, not leave the house and feel bad for myself OR I could own it. I think that I am somewhere in the middle. I try to be kind to myself and recognize that my body has been through a lot over these last few months. Dieting or pushing myself to lose weight should not be on my radar right now. I try to focus on making healthy choices and doing whatever is in my power to keep my body strong as I move into the next phase of my treatment. It is hard to not feel confident in my body, but this is (hopefully) temporary.

This all stems back to being mindful of what is in my control and what is not. I cannot dwell on things that are beyond my control. My weight gain and hair loss are not something that I have the power to change right now, so it does not do me any good to waste my thoughts on being unhappy about it. Admittedly, I am not able to do this 100% of the time, but when I do find myself letting my mind wander to an unhealthy place, I am able to rein myself back in pretty quickly. It is not about ignoring the negative thoughts and blocking them out, but instead, allowing myself to recognize my feelings without giving them the power to change my attitude. I think that has been the key to “staying strong” throughout all of this and hope that I am able to keep this up. 

Taxol 10, The Final One

The Final Treatment Day, 9/24

Today was my final Tuesday morning walk to NYU. Yes, I’m sure I’ll be back here many times over the next couple of months, but my Tuesday morning walk to chemo has become something of a ritual. I listen to my podcasts, pick up my breakfast and stroll up Third Avenue. I’ve gotten used to the butterfly, holding-my-breath feeling of waiting for my blood work to come back and may even miss the relief I feel when I hear that I am cleared for treatment. 

Today there is a feeling of excitement when my oncologist and nurse practitioner walk into the exam room. We discuss the next steps after today’s treatment and she congratulates me on powering through the chemotherapy part of my treatment. My nurse Stacy tells me that when my treatment is finished, I will get to ring the bell to signal that I am finished with chemo. 

I get hooked up to the IV and ice my hands and feet for the last time. Usually the Taxol hour flies by but today, time seems to move slowly. I am anxious to be finished. Finally, Matt and I hear the familiar beep, beep that the infusion is finished. I start to smile nervously. Stacy disconnects me from the machine and we walk over to the bell. I wasn’t sure exactly how I was going to feel in this moment but as I start to read the poem next to the bell, I start to cry. 

“Ring this bell, three times well
Its toll will clearly say
My treatments done
This course has run and
Now I’m on my way”

14 treatments (and many delays) later, I’m finished. It sounds strange, but I am going to miss Tuesdays. The whole routine of getting chemo became so ordinary. I am going to miss every person who became such a familiar face during this process. It will be strange to not see these people anymore. 

Now that chemo is over, the next stage of my treatment is surgery. I will have a bilateral mastectomy on October 21st. The pathology report from surgery will determine if I will need any further treatments, though my doctors are pretty sure that won’t be necessary.

Though getting through this was not always easy, I am SO LUCKY to have had such amazing support to help get my to this finish line. I am so grateful to every person who sat with me during my treatments, sent a text to check-in, a meal or flowers. I really cannot express how much the support has meant to me.

Taxol 9, Part 3

Day 1, Treatment Day (Tuesday, 9/17): After my delay last week I was given a shot to help boost my counts. I went back to NYU on Friday for a blood test and was happy to hear that my neutrophil count was up to 3.2 and that I would not need another shot. Everyone was confident that I would be cleared for my next treatment. 

Well, this morning I came for my blood test, feeling 100% confident that my counts would be fine (as usual), only to find out that my neutrophils had dropped to 1.2. I was cleared for my treatment, but just barely. In order to make sure that I would be cleared for my final treatment next week I will have to get 3 shots this week to help keep my counts up. 

This was my 9th Taxol and 4th (and final) Carboplatin. It has been almost a month since my last time getting both drugs and I forgot how long it takes. Thankfully, even though Matt was traveling, my friends came to keep me company. 

After chemo, I walked home and took a long nap. I woke up feeling really groggy, went to acupuncture, got the boys to bed, and had dinner with my brother. I was feeling really off. I was tired but I had a hard time falling asleep and was feeling a bit nauseous. I haven’t felt like that in a long time.

Day 2: After a rough night, Aidan woke up at 5:30am ready to start his day (yay!). I was not feeling great but I managed to feed the boys breakfast and get them dressed. By the time my nanny arrived at 8am, I was anxious to get right back in bed and go to sleep. Unfortunately, I didn’t have much time to rest, as I needed to go back to NYU at 10am to get a shot. After getting my shot, I spent the rest of the day in bed.


Day 3: Aidan had a rough night and ended up coming into bed with us at about 12:30am. While Matt woke up saying, “That wasn’t so horrible” while I spent the night attached to a 3.5 year old who couldn’t get closer to me.

Today is Cooper’s 2nd birthday and if it wasn’t for our tradition of singing Happy Birthday and throwing balloons in the crib, I would have told Matt to handle the boys and rolled right over and gone back to sleep. BUT, my baby is 2, so we took the boys to the diner and sang happy birthday with a candle in a stack of pancakes. Then, we took the boys to school, I went to get my shot, treated myself to Cafe Panna and got right back into bed for a looooong nap. Thankfully, I set my alarm or I would have slept right through my acupuncture appointment.

Day 4: Another day at NYU to have my blood counts checked. Thankfully, my counts were high enough that I did not need to get a third shot. I spent the rest of the day relaxing. We have a busy weekend ahead of Wisconsin vs. Michigan football, birthday parties and a bridal shower.

Chemo Update: It has been a while since I had the combination of the two drugs and I forgot how much the Taxol/Carbo combo knocks me out. Feeling relieved that this is my last time having to power through this as it really makes me feel tired and foggy.
Only 1 more treatment to go!

Taxol 9, Part 1 & 2

Part 1 (9/3/19)

Another delay. 

I walked into NYU feeling soooo confident. My blood counts were high the week before, I felt great, my cough was gone, I was positive that I would be cleared for treatment. While meeting with my doctors she told me that my neutrophil count was down to 0.9 and I would not be able to get treated. I was shocked. I asked how it was possible for it to drop from 1.5 to 0.9 in one week. She explained that my counts were only high last week because body was fighting off the cough. Once my white blood cells were finished doing their job, they plummeted. It made sense but I was still annoyed.

My grandma had come into the city to sit with me during chemo so instead of watching me sit in a chair, we went out for lunch.  We had a nice time together but I spent the rest of the afternoon sulking about my treatment delay.


Part 1.5 (9/9/19)

Once chemotherapy is completed, I will have a bilateral mastectomy. Today, I met with my breast surgeon, Deborah Axelrod, to schedule the surgery. I still have a few more weeks of treatment and then my body will need a few weeks to recover from chemo. The surgery is set for Monday, October 21st.

During the breast exam, my doctor was very pleased that she could not feel anything suspicious. I used to be able to feel my tumor easily and could even see it poking out of my breast. Now, my doctors have every reason to believe that it is completely gone. Though we already determined that I would be having a mastectomy, we discussed all other surgical options. Given that my tumor has responded so well to treatments, I would have been a good candidate for a lumpectomy, if not for my BRCA status. Because my chances of recurrence are higher than the general population, it makes sense to remove the whole breast. I am totally fine with this decision.

Part 2 (9/10/19)

After my delay last week I was more confident than ever that I would be treated. I have never had a delay two weeks in a row so I thought that there was no possible way that my counts wouldn’t rebound after taking a week off. Well, you learn something new every day. My counts were super low (0.7) and my treatment was being held again. I immediately started sobbing. These back-to-back delays have been super disappointing and stressful. With each treatment I feel like I am getting closer to the finish line and each delay makes me take a step back. 

I immediately had a million questions, Why aren’t my counts getting higher? What does this mean for my timeline? Will I have to reschedule my surgery? As I grabbed a pile of tissues, my oncologist walked in the room and said, “no more crying! I already wrote it my notes that we may only do 10 treatments instead of 12.” I asked if I would have to reschedule my surgery and she said “absolutely not, we will work around it.” We discussed the reasons for reducing my total number of treatments from 12 to 10 and any long term implications that may have. She assured me that there is no reason to be concerned about only completing 10 treatments. I was relieved. 

My doctor gave me a shot to help boost my white blood cells and instructed me to come back to the hospital on Friday to have my counts checked again. If they do not go up as much as they would like, I will get another shot. The goal at this point is to ensure that I am well enough for two more treatments, with my final treatment scheduled for September 24th.  

Chemo Status: Still only 8 Taxol down, but now only 2 to go!

In other news: Aidan and Cooper both started school this week. Both boys were super excited and ran right in to their classrooms.