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.

Taxol 8

Day 1, Treatment Day (Tuesday): This was the fastest chemo I have ever experienced. Matt had his company’s sales conference so he wasn’t with me and I decided that I wanted to go by myself. I went in early for blood work and met with my doctor. Instead of only talking about treatments and blood counts we started talking about how cancer changes your perspective and how time and relationships become more important. She sees patients of all ages and stages and I can only imagine how hard that must be.

I walked into NYU that morning not sure if I was even going to be able to get treatment because of a minor cough that I had over the weekend. I was shocked when my neutrophils were 1.5! The “healthiest” they have ever been during my whole treatment. I went straight from the doctor to the chemo chair and was finished with my treatment by 11am – it was awesome!

Day 2-5 (Wednesday-Friday): Aidan’s camp is finished so the boys don’t really have any scheduled activities. My nanny has been amazing about taking the boys for all-day play dates. They leave the house around 10am and don’t come back home until almost 7pm – after already having eaten dinner and taken baths. It has allowed me to really relax quietly at home.

Labor Day Weekend: We had super busy and fun Labor Day Weekend with friends and family. I can’t believe that September is here!

Chemo Status: 8 Taxol down, 4 to go!

Taxol 7, Part 1 and 2

Part 1

Another delay.


When I met with my doctors on Tuesday, they told me that my counts were too low for treatment. The strangest part was that I felt totally fine even though my counts were at their lowest point (0.9). Still can’t figure that one out.


While every delay is super disappointing, I was a little more okay with this one. Matt was traveling in London this week and I was scheduled to get Taxol 7 & Carbo 3. I have been able to tolerate the Taxol really well (with the exception of the itchy feet) but the Carboplatin seems to hit me a little harder. Before the delay, I was already complaining to Matthew about having to do the nights and mornings with Aidan & Cooper by myself while probably not feeling my best. Also, my birthday was also coming up that week and I had a few celebrations planned that I wanted to feel good for. So, all-in-all, I wasn’t happy about the delay, but it wasn’t the worst thing in the world.


So I took the week to really rest up. I spent ALL DAY Wednesday and Thursday in bed, went to acupuncture twice and celebrated my birthday the best that I could. Overall, I felt really good, except for the occasional itchiness.

Part 2

Day 1, Treatment Day (Tuesday): The following Tuesday I went back to NYU and my counts were up to 1.2! While meeting with my oncologist, we talked about the only real side effect that I have been experiencing – itchy feet. While I am not feeling itchy all the time, I have been experiencing “itchy spells” where my feet start to itch uncontrollably for about 20 minutes (sometimes longer). It is extremely uncomfortable, but then it goes away.


My doctor mentioned that this is not a typical side effect of Taxol and they believe that this actually could be a precursor to neuropathy. For some, neuropathy is temporary but for others it can be permanent so they want to take extra precautions and monitor my itching closely. There was some debate about lowering the dose of Taxol that I am getting, but it was decided that it is not necessary to do so at this point.


Because this treatment included Taxol and Carboplatin it took a very long time. I didn’t get home until almost 2pm and was exhausted. I took a nap and relaxed for the rest of the day.


Day 2 (Wednesday): I spent the entire day in bed resting and felt not great. I was foggy and didn’t feel sharp. It was frustrating because usually I am unaffected by the treatments but today was not a great day. 
At the end of the day, Cooper went to his Mimi’s house and I had to take Aidan to a friend’s birthday party. He had been talking about going to the party all day so I didn’t even consider missing it. After laying in bed all day, it actually felt really good to get out. 


Day 3 (Thursday): I woke up feeling pretty good. Matt and I took Aidan out for a special breakfast and Aidan helped me at the supermarket. I felt well enough to walk to the West Village to meet a friend for coffee. It was a gorgeous day and it felt really good to move my body. After coffee I walked all the way home instead of taking a cab. It just felt wasteful to not take advantage of the beautiful weather but I was exhausted when I got home and spent the rest of the afternoon in bed. I may have overdone it but it was worth it.


Day 4 (Friday): Unfortunately I still didn’t feel like my normal self by Friday. With the Taxol, I am able to bounce back right away but the Carbo really hits me. I spent the day relaxing, went for a walk, got a manicure, and had an early dinner date with Matt.


Also – strangely, I didn’t experience any itching this week. My doctors prescribed me a new medication to start when the itching came back and it has not returned. I am not sure if that means that it won’t happen again ever or if for some reason my body is tolerating the Taxol differently, but I am grateful for a week of no itching.


Chemo Status:

7 Taxol down, 5 to go!

Rollercoaster

It’s true that this cancer journey really is a roller coaster. After feeling mostly positive about everything that is going on (and posting about it!) I took a major downturn last Friday. I woke up early on Friday morning and just did not feel like myself. Correction: Aidan work me up at 5:30am saying, “Mom, I see the sun! It’s time to wake up!” On a good day, being woken up that early does not make me happy, but aside from wishing that Aidan would sleep until a normal hour, I woke up feeling unusually down. I couldn’t pinpoint the exact emotion that I was feeling, but it wasn’t good. I was tense, short tempered, and just not myself.

After being really unpleasant to Matthew and dropping Aidan off at camp, I walked home with Cooper and gave him straight to my nanny. I needed some time alone to figure out what I was feeling and what was making me feel that way. I cancelled my Pilates class, opting for a massage instead, and then went for a walk to try to sort out my thoughts.

Though I am usually very okay with my current situation, I just wasn’t feeling that way today. I was struggling with how I look physically – without my hair and having definitely put on a few pounds that I had worked hard to lose. I was thinking about the summer that I could have had and all of the classes that I couldn’t go to with Cooper because of my immune system. I was thinking about my boobs and how even though I certainly don’t love how they look now, I will definitely mourn the loss of my natural body after I have surgery. I let myself feel all of these emotions and it was overwhelming.

On Friday afternoons, Aidan’s camp puts on a performance. I was on my way there and decided to get an iced coffee on the way. Matt walked into to meet me at the coffee shop and I took one look at him and immediately started hysterical crying. I could barely get out the words to order my coffee. Matt asked what was wrong and I shrugged, unable to speak. We walked silently for a block while I cried and then I unloaded how I just wasn’t feeling good about myself physically and how everyone always compliments how strong I have been and it puts pressure on me to always be that way. I told him that I am just having a bad day, feeling sad, that I know that it is okay for me to feel that way and hopefully it only lasts for a little while before I go back to feeling like my normal self. He gave me a big hug and told me that he loves me and everything will be okay. I took a few deep breaths and tried to calm myself down before going in to Aidan’s show.

While I was sitting in Aidan’s show, I allowed myself to feel the importance of that moment. That Matt and I were able to be there to watch Aidan sing and dance (though he spent most of the time looking around and playing with the hem of his shirt). I could spend all of my time thinking about the moments that I am missing out on, what could have been and what the future may hold OR I could spend that time embracing the experiences that I able to have and enjoying my current reality.

On Friday night, we had family over to start my birthday celebrations and it was fun. The heavy emotions had passed and I was feeling almost like my normal self. Since the day of my diagnosis, March 25th, I have only had a few moments where I felt the weight of it all, and this was the worst. But it only lasted a couple of hours. It felt good to let myself feel, let it out, move on, and go back to living my life. I can’t say this enough, it sucks to have cancer, but it doesn’t make my life suck all the time.

Taxol 6

Day 1, Treatment Day (Tuesday): Another early morning at NYU. I was brought right in to have my blood taken, didn’t have to wait at all for my oncologist and since everything was going so quickly, she sent me up to the infusion floor before my numbers came back and said that she would stop by if there were any issues. Stacy came to let me know that my neutrophil count was 1.1, but they were going to allow me to get treated. Phew. It is strange how my neutrophil counts don’t really correlate with how I am actually feeling.

After a quick treatment, Matt and I walked home and I took a nap. I must have really needed a nap because I slept for 3 hours and missed my acupuncture appointment. Oops. Thankfully, she was able to squeeze me in at the end of the day.

Matt and I cooked dinner and went to sleep early.

Day 2 (Wednesday): I woke up feeling great and continued my Wednesday routine – I brought Aidan to camp, went to a Pilates class, had lunch with a friend, took a nap, and had a really relaxing afternoon.

Day 3 (Thursday): Another day of feeling great. Didn’t do anything special. Aidan and I both got acupuncture in the afternoon.

Day 4 (Friday): This was actually the worst day, emotionally, that I’ve had throughout this whole cancer journey. I’ll elaborate in another post but, it started out with Aidan waking me up at 5:30am and was downhill from there. Most days I feel really okay with everything going on, but I guess today wasn’t one of those days.

Physically, I am still experiencing a lot of itching in my feet and other strange parts of my body. I also have started to have knuckle pain in my left hand which is also a side effect of Taxol. For some people, the feeling is temporary and goes away once treatment is over but for others it can turn into ongoing arthritis. Hopefully, I experience the former. I have started taking epsom salt baths to relieve the pain and am addressing it with acupuncture as well.

Chemo Status:

6 Taxol down, 6 to go!

Other fun things I did this week: got stuck in the rain, had breakfast at Joe Jr., watched Aidan’s camp performance of Singing in the Rain, went to the Union Square Farmer’s Market, had a pool day, & birthday celebrations began

.

Lucky

The other night, Matt and I were laying on the couch watching Euphoria and I journeyed down an internet – Google, Facebook, Instagram – rabbit hole. Reading cancer blogs, cancer meme accounts, following other people’s hair growth journeys, articles about the statistics of recurrences, deep, deep rabbit hole. All of a sudden I was overcome with emotion and started to cry. I was crying for the shitty situation that I am in, and for the people who have it worse than me.

I hate the idea of comparing my cancer situation to anyone else’s, because everyone’s journey is so unique, but it feels impossible not to. I tried to explain to Matt that I was crying because even though it sucks that I have cancer, we are so lucky that everything has gone so smoothly up to this point. My side effects haven’t been so awful, my hair is starting to grow back, my doctors are happy with my progress, it’s all good things! Yes, it sucks to even be in this situation in the first place, but everyone has their sh!t, that’s life! I would never want to say that my situation is better or worse than anyone else’s, my sentiments do not have to be at the expense of someone else’s misfortune. I can’t help but feel lucky for where I am today.

Taxol 5

Day 1, Treatment Day (Tuesday): Every treatment day involves a lot of waiting. I arrive at NYU and wait to be brought in for my bloodwork. I have to wait for the bloodwork to come back from the lab which usually takes about an hour. I wait for my oncologist to review the bloodwork and spend about 30 minutes with her. I wait to be brought in by my nurse to start my treatment. I wait for the chemo to be brought up to the infusion floor and finally I get my treatment.

Thankfully, this week my oncologist decided that we could skip a week of our meeting together so that I could go straight from bloodwork to the infusion floor. We discussed last week that things have been going really smoothly so far, and if I wanted, she would be okay with skipping our appointment. If something should come up where I was having any new symptoms or if my bloodwork came back as abnormal, we would meet, but if everything was normal I could skip straight to getting my treatment.

So, this morning my bloodwork was scheduled to start at 7:15am and my infusion at 8am. Usually I do not start my infusion until at least 10am so this would allow me to finish much earlier.

I arrived at NYU at 7am and was the only person in the lobby. It was eerie and weird. I asked the security guard and he said that the nurses usually arrive right at 7:15am. When the nurse called me in, she asked me which vein I wanted my IV in. I told her that I have a port and don’t get an IV in my arm. She informed me that she is a phlebotomist and the nurses who do the ports do not start until at least 8am and since I wasn’t scheduled with them, I would have to be squeezed in. With some light begging, I convinced a nurse to squeeze me in. So much for starting early.

Instead of meeting with my oncologist to go through my bloodwork, I waited for my nurse Stacy to tell me if I would be able to get treatment. At first, she said that everything coming back looked good but that they were waiting for a few more numbers before we could get started. Then, she gave me my neutrophil count – 1.2 – borderline, again. She said that they usually treat people with 1.2 but she would have to call my oncologist to get approval. Already I got a bad feeling. She also said that my potassium counts were a little low and I would have to get an EKG. More waiting.

Thankfully, my EKG looked normal and I was cleared to start treatment – yay! Again, actual treatment was smooth. I only got Taxol today so it was pretty quick. I went home and took a nap.

Our nanny was out sick today so Cooper was at my parent’s house for a sleepover. I picked up Aidan from camp and brought him home for an afternoon of watching TV and relaxing on the couch. Aidan was not too upset about that. Matt and I cooked dinner, watched Stranger Things and went to sleep early.

Day 2 (Wednesday): I woke up feeling great. I brought Aidan to camp, did laundry, went to a Pilates class, had lunch with a friend, and tutored. I may have overdone it because at the end of the day I was exhausted but it felt really good to have a normal day.

Day 3 (Thursday): I definitely overdid it the day before and decided to spend today doing absolutely nothing. I brought Aidan to camp, came home and got right back into bed. I caught up on garbage TV shows, took a nap, and eventually dragged myself out of the house for a mani-pedi. Nothing like a day of self-care.

Day 4 (Friday): Another really normal day of feeling pretty great. I took Aidan to camp, went to a Pilates class, took a nap, saw Aidan’s camp performance and went to ABC Kitchen with Matt sans-wig.

Chemo Status:

5 Taxol down, 7 to go!

It’s amazing how much quicker I bounce back when it is just Taxol without the Carboplatin. Thankfully I only have 2 more Carbo treatments left but I’ll have to make sure not to plan too much in the days after.

7 more treatments really doesn’t feel like that many. Inching closer and closer to the finish line