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!

Taxol 3

Day 1, Treatment Day (Tuesday): Another routine treatment, followed by a quick nap and a long walk around the neighborhood. Nothing eventful or out of the ordinary. I was able to fall asleep without much trouble – huge win.

Day 2 (Wednesday): I woke up feeling great again (yay!). Aidan slept at my parent’s house the night before so I spent the morning with Cooper. We walked Matt to work, walked through the Union Square Farmer’s Market and shared a bagel in Gramercy Park – all before 9am. Other than our morning adventures, I didn’t really do much. I wanted to make sure to have a very relaxing day as I had my friend’s wedding that night.

Getting ready for the wedding was much different than usual. I didn’t have to set aside time to do my hair, as my wig was already styled. Usually, I don’t care as much about my make-up but now that I don’t have a full set of eyebrows or eyelashes, having my make-up done was more important to me. Vain problems, but problems nonetheless.

Matt and I had a great time at the wedding. Rachel and Josh were glowing. The ceremony was on a gorgeous rooftop in Brooklyn and we danced all night.

Day 3 (Thursday) and beyond: So grateful that Aidan & Cooper slept at Matt’s mom’s house. Matt and I were exhausted after a night of dancing and were relieved to not have to wake up with the boys at 6am. We had a super lazy morning before heading to NJ for a 4th of July BBQ with family. We spent the rest of the weekend hanging in NYC and Great Neck.

It’s funny how other than a few sentences about taking naps and not having eyebrows or eyelashes, the whole post is really just a play-by-play of my normal life. I often forget that I even have cancer. Thankfully, I have been able to keep going with most of my normal activities and have felt healthy enough to do so 🙂

Chemo Status:

3 Taxol down, 9 to go!

1 more treatment before we are off to Woodstock!

Taxol 2

Day 1, Treatment Day (Tuesday): Everything about this treatment was super routine- blood work, oncologist, chemo. The only differences were (a) Instead of having a chemo chair, I was assigned a room with a bed (much more comfortable) and (b) Matt was in London so my mom came with me. The treatment went smoothly- I got a lower dose of Benadryl so I wasn’t as sleepy, watched an episode of Killing Eve, and ate leftover snacks from Lisa’s bachelorette.

I forgot to mention that one of the side effects of Taxol is neuropathy (tingling/numbness in fingers and toes) so I have to wear ice booties and gloves during the whole treatments to prevent the Taxol from getting into my fingers and toes. This is definitely uncomfortable.

After the treatment, I went home to take a nap but was feeling fine by the afternoon. I actually ended up going out for an early dinner with my brother and felt totally fine.

I did not want to have a repeat of last week, so I took the Ativan hoping that I would be able to get a better night sleep. Unfortunately, it was still very hard for me to fall asleep and I woke up periodically throughout the night. I need to find a solution for this.

Day 2 (Wednesday): Despite not getting a good night sleep, I woke up feeling great. My mom slept over to help with the boys in the morning because we weren’t sure if I would be able to get out of bed. Thankfully, I was able to make their breakfast and lunch, get them dressed and bring Aidan to camp. I did take a short late-morning nap, but otherwise I feel great.

Day 3 (Thursday) and beyond: I am so grateful for how I have been feeling during these treatments. Post Taxol #2 I had a play date with Julie, Sage and Cooper in the park, went to Wolfgang’s, Farmer and the Fish, Emily, and Follia, for dinner, hosted a BBQ for our friends at our apartment, went to Turtle Back Zoo with family, watched Aidan perform Hamilton at camp, and tutored 2 students. If this is any indication of what the next 10 weeks will bring, I think I can handle it!

Chemo Status:

2 Taxol down, 10 to go!

Taxol 1 (Part 2)

After the disappointment of having my treatment delayed, I took opportunity to use the week to take care of myself. I went to a sunset yoga class with 5 Under 40 (5under40.org), did acupuncture, took a Pilates class and celebrated Father’s Day feeling great.

Day 1, Treatment Day (Tuesday): On June 18th, I walked into NYU feeling healthy and ready (and also a little anxious). I quickly had my bloodwork and then waited to meet with my oncologist. My oncologist was happy with the improvement in my blood work and I was cleared to start chemo (Yes!!!). We discussed the side effects that I should expect with the Taxol and the decision to add Carboplatin to 4 of the Taxol treatments. Overall, it seems like the Taxol should be easier to handle than the AC but we’ll see!

My favorite nurse was waiting for me in my chemo cubicle. She explained to me that even though the Taxol side effects will be easier to manage, the actual treatments will feel different. I will be getting Benadryl with the Taxol which will make me feel very sleepy during the treatments and I need to make sure I have someone to bring me home after.

The actual treatment was shorter than the AC but I slept almost the whole time. I hated how sleepy the Benadryl made me feel and was anxious to get into my bed when the treatment was over.

I stayed in bed for the rest of the afternoon but was able to come out of the bedroom to help get the boys to sleep, have dinner with Matt, and hang out. Matt and I got into bed at the same time but I wasn’t feeling sleepy yet so I started to read. Without realizing, I read straight until 4:30 in the morning. I guess the strength of the steroids outweighed the Benadryl! I probably should have taken an Ativan at bedtime to help me sleep, oops!

Day 2 (Wednesday): Since I didn’t get any sleep the night before, I was exhausted in the morning. I spent most of the morning in bed resting but by the afternoon I felt pretty good. I went out for lunch, got my nails done and felt really normal. No other side effects other than mild fatigue.

Day 3 (Thursday) and beyond: Overall, it seems like the first Taxol treatment was extremely tolerable. I left on Thursday morning for my friend Lisa’s bachelorette party in the Hamptons. I only stayed for one night but I was happy that I was able to go at all. I couldn’t party the way that I wanted to, but it was nice to celebrate my friend and spend time with all of the important people in Lisa’s life. Over the weekend, Matt, the boys and I went to our friends’ beach house on the Jersey Shore. Aidan and Cooper had a blast playing with their friends and I was so happy that I was able to witness it.

Chemo Status:

1 Taxol down, 11 to go!

I know that the treatments are supposed to compound and get worse over time, but if this first treatment is any indication, I think I’ll be okay.

Acupuncture & Chemo

How I came to acupuncture actually started with Aidan. I have always been a little skeptical of all alternative medicines and have leaned more towards western medicines when I am not feeling well. Matt is the opposite. He rarely takes any medicine at all, even when he is feeling awful.

Aidan would get sick pretty frequently as a baby. He had a lot of ear infections and eventually had tubes put in. He would also get really high fevers and wheezing coughs that would linger. We were frequent visitors to the pediatrician’s office for albuterol nebulizer treatments and oxygen checks. It was obvious that there was something going on but it wasn’t until Aidan turned 3 that his pulmonologist used the word “asthma”. Matt and I were not surprised to hear that word, but we were shocked at how the pulmonologist wanted to treat his asthma – with twice a day steroids and a rescue inhaler.

The thought of Aidan having to be put on regular medicine like that didn’t thrill me but I was willing to comply with the doctors orders in order to make sure that Aidan was able to breathe. Matt insisted that I look into an alternative approach before agreeing to let Aidan start the steroids.

The mom of a former student of mine suggested that Aidan try acupuncture and told me that she was able to control her two children’s asthma with diet changes and acupuncture. I was extremely skeptical but decided to give it a shot.

Since Aidan started acupuncture in January he has not had a single episode where I considered using the nebulizer or inhaler. He began going to acupuncture twice a week and now goes every other week for maintenance. He is not on any medication to control his asthma. He has had 1 cough that cleared up quickly. I was blown away. I believe that acupuncture works because Aidan has no clue why he is getting the treatments so there can’t be any placebo effect.

SO when I got diagnosed, my oncologist suggested that I try acupuncture to boost my immune system and help manage the side effects that come with chemo. I really appreciated that the doctor saw the value in incorporating acupuncture along side the chemo.

I started going to acupuncture at least once a week and have found it to be really beneficial. The actual treatments are very relaxing and I feel immediately better afterwards. Each session is different depending on how I am feeling that day. Kirsten, our acupuncturist, does a combination of acupuncture, moxibustion, cupping, and Chinese herbs during the treatments. I believe that acupuncture is a huge part of why my side effects from chemo haven’t been so horrible.