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

Taking The Wig Off (Hair, Part 4)

I did a thing. On Monday, I decided to say “F!@k it” and stopped wearing my wig. I went out into the world without my wig and let my fuzzy head feel the sun.

I didn’t get rid of my wig all at once, I started small. On Monday, I went to a Pilates class (3 blocks from my apartment) and then straight back home without my wig. On Tuesday, while walking home from chemo with Matt, I took my wig off and sat at a restaurant for lunch without my wig but, I still wore my wig to pick up Aidan from camp. On Wednesday, I didn’t wear my wig at all – even to camp – and I haven’t worn it since. On Thursday, I overcame a hurdle and went wigless to get my nails done and sit at my local coffee shop and endured lots of stares. On Friday night, Matt and I went to ABC Kitchen for dinner and I did not wear my wig.

The reactions from people around me have been mostly positive. One of the doormen in my building, also bald, gave me a head nod and smile in solidarity as I walked out of the building without my wig. My nanny was in shock that I would go out in public without my wig and thought that I was playing a joke on her when I told her that I wasn’t wearing my wig to pick up Aidan from camp. I got a lot of stares at the nail salon and it took almost an hour before my manicurist asked about my shaved head. I find myself having to “own” my cancer more now, explaining to the strangers with familiar faces in my neighborhood why the hair that they are used to seeing is gone. Seeing me without any hair is shocking and I can imagine that it makes some people uncomfortable because they aren’t sure the right thing to say. Truthfully, there is no right or wrong thing to say.

Wearing my wig up until now has served a purpose. It allowed me to continue looking like “myself” and prevented the outside world from knowing that I have cancer. My wig matched my style and allowed me to continue to feel “normal”, in spite of everything else that is going on. Now that I have taken the wig off, everyone around me can see that I look different and would rightfully assume that my new look is not something that I willingly tried out.

I am still not used to how I look without my wig but it is wayyyy more comfortable. I never really loved having to wear a wig and found it both annoying and phony. To be honest, I’m not sure that I was ever used to how I looked when I was wearing my wig.

Prior to all of this cancer stuff, I always felt very confident in how I looked. I may not have had the perfect body, face or hair but I was always comfortable in my own skin. I liked what I saw when I looked in the mirror and felt really good about myself. Now, I feel a bit detached from my appearance. I don’t recognize myself when I look in the mirror and don’t feel like my physical appearance reflects how I feel on the inside. I still want to look “cute” but I don’t think that my head matches my outfits.

My hair has already started growing, though I have a long way to go until it looks anything like it did before. I have to remind myself constantly that this is all temporary and one day I will look in the mirror and feel connected to the face looking back at me.

Taxol 4, Part 2

After 2 weeks in Woodstock, it was time to go back to reality and head back to the city for chemo. Matt and I left Woodstock on Monday night after the boys were asleep so that we would be able to wake up in the city on Tuesday morning.

Day 1, Treatment Day (Tuesday): Matt and I had a early morning breakfast date at Joe Jr. and walked to NYU together. Walking in to NYU I was feeling nervous and anxious. Health wise, I felt totally fine, but after last week’s delay, and driving 2 hours back from Woodstock, I was nervous that I wouldn’t get cleared for treatment. Waiting for my bloodwork to come back was torture. I held my breath until finally my oncologist said that everything looked fine and I would be able to be treated today – YES!

Actual treatment was long but uneventful. Lots of icing of hands and feet to hopefully prevent the itching and neuropathy. Between icing I was able to finish the string bracelet that I started in Woodstock and caught up on some stupid TV shows. This treatment included both Taxol and Carboplatin which added time to the length of the infusion and may add some more uncomfortable side effects- hopefully not too bad.

After treatment, Matt and I ate turkey sandwiches in the car and drove straight back to Woodstock. We took the boys to the playground, went out for Chinese food and had a normal afternoon.

Day 2 (Wednesday): Matt took Aidan to camp this morning, Cooper spent the morning with Arefa, and I spent most of the day in bed resting. By the late afternoon I was feeling a little better and we took the boys to the Woodstock Farmers Market and out to our favorite restaurant in the area. I went to sleep early but wasn’t feeling so horrible.

Day 3 (Thursday): Today we left our Woodstock house and went to the Emerson hotel for the weekend. Usually by day 3 I am feeling pretty much back to normal, but I guess the Carboplatin is leaving more lingering effects. It was a little too much for me packing up the house and getting us ready for the hotel but I was able too get it done (with a lot of help from Matt!). I am still feeling very tired but I’m trying to push through. We had a very early dinner with the boys at Emerson and the whole family was in bed before 8pm.

Day 4 (Friday): After an early breakfast at Phoenicia Diner, I was feeling really exhausted and run down. Matt took the boys and let me rest in the room. I was really frustrated that I wasn’t able to participate in the morning activities but I needed to listen to my body. By the afternoon, I felt much better.

Thankfully the only side effect I continue to experience is fatigue. The itching is being kept under control by the antihistamines and I am feeling pretty good.

Chemo Status:

4 Taxol down, 8 to go!

Taxol 4, Part 1

When I start with a “Part 1”, you know there is going to be an issue. Well, it’s another delay. The worst part about not getting treated this time is: (a) I felt 100% fine going into treatment (b) We already planned to skip next week’s treatment because we are going to be away in Woodstock (c) Every delay pushes the finish line farther and farther away. Ugh.

Day 0 (Monday): The day before my 4th treatment, I got into bed around noon to take a nap. All of a sudden, my feet started to itch uncontrollably. I have never experienced such an uncomfortable feeling. It would not go away. I stuck my feet in a freezing cold bath and was scratching them with a hairbrush. It was unbearable.

Finally, I took to Google and learned that itchy feet is related to neuropathy. I called my doctor and she instructed me to take an antihistamine and said that we would discuss other options the next day during our appointment.

Day 1, Treatment Day (Tuesday): I walked into NYU feeling totally confident. I went for my bloodwork and waited for my oncologist. During our appointment we talked about the itching. She tested different spots on my hands and feet for numbness and tingling. Thankfully, I haven’t been experiencing any numbness but the bouts of itchiness have been very uncomfortable. She told me to continue taking the antihistamine and prescribed a topical steroid cream to try.

Then, she looked over my bloodwork and said, “your neutrophil count is low.” I asked what that meant and she said, “You wont be getting treated today.” I sunk in my chair. She explained that neutrophils are an indicator for my body’s immunity and that even though I feel great, my immunity is low. If I did get chemo, I would probably develop an infection and end up in the hospital – not good.

I felt extremely disappointed and frustrated, and, of course, started to cry.

Every treatment delay pushes the finish line farther and farther away. I am trying to power through this but it is not always easy. I understand that delays in treatment are normal but they are still annoying.

On the bright side: I was able to pick up Aidan from camp and spent the afternoon with Aidan and Cooper playing in the sprinklers. We are leaving later in the week to spend some time in Woodstock and now I will probably feel great for the trip!