No Hair, Now What?

Short hair. Buzzed hair. No hair. Now what?

Before actually cutting my hair, my biggest concern was finding the right wig. The one that would look just like my real hair so you “can’t even tell” that I’m wearing a wig. I bought a great wig to match my hair from Bitz-and-Pieces and a couple of “hat wigs” from Dear Martha for a more casual look and thought that I was set.

Now that my hair is gone, I am feeling extremely conflicted over how I want to look. Everything that I put on my head feels annoying and fussy. My hat wigs are the easiest, but they are a bit uncomfortable and I’m not really a hat person. My real wig feels very heavy and a bit phony and doesn’t really look like my hair. Matt says that I just need to get used to wearing something on my head all of time and shouldn’t expect it to feel normal right away – always the voice of reason.

Deciding to part ways with my hair was easier than I thought. I’m finding that the real challenge is figuring out how to live day-to-day feeling comfortable without any hair on my head. I actually liked the way that my head looks shaved, but now it looks patchy as more hair falls out. Others have recommended head scarves but I haven’t found any that I like and I don’t even know how to tie them properly. So, what are my options?

We had plans to go out for dinner at Maialino and I knew that I would have to rip the bandaid off and wear my wig. I fussed with it all the way to the restaurant. It was itchy and in my face and just didn’t feel right. After that night I decided that maybe it just needed a fresh cut so I took my wig to Davide (Davide Hair Studio – 379 Park Ave South) and he gave it a major refresh. He took out a lot of the weight from the wig, gave it a nice shape, and made it feel better. I walked out of the salon feeling really good about my wig for the first time.

People have said that wearing a wig would make life easier, because I can, “just throw it on and go” but it is really not the same. I find that it is taking me long to get ready with my wigs that with my real hair. Even though my real hair always had a pretty flawless blowout, it was never fussy. I would throw it up in a pony most of the time. The cut on my wig is finally right but I’m still not happy with the color. I don’t really know how to style it and I’m not always comfortable wearing it, but it’s getting better.

Would love to hear any other head-covering suggestions!

The Day Before…

Aside from the first couple of days after chemotherapy, I feel pretty normal. It takes 3-4 days for the major fatigue to wear off, but once it does, my life really returns to normal to the point where I have to remind myself that I am being treated for breast cancer. I go back to tutoring as much as I can, bringing Aidan to/from school, playing with Cooper, going to the supermarket, meeting friends for lunch, hosting dinners and brunches at our apartment, etc. I still try to stay away from germs and avoid playspaces and public transportation, but I did that even before cancer!

This makes the days leading up to chemo that much more anxiety filled as I know my feelings of normalcy are coming to an end and the cycle will begin again. I try to savor every last minute of family time with Matt and the boys and “running the household”, as the next few days will involve little more than laying in bed and resting.

I hate the way the chemo makes my body feel but I really think that it is working. I can physically feel the changes in my tumor and it’s pretty amazing. I keep having dreams that I show up for my chemotherapy treatments and the oncologist says, “Wow! Your cancer is gone! You can stop chemo!” While that is totally unrealistic (unfortunately), it does feel good to be going through the treatments and checking them off the list.

Tomorrow is AC #3 of 4. Almost 75% done with the first leg of this cancer journey. #shaystrong

Chemo, AC Round 2

Day 1, Treatment Day: For this round of chemo, I just wanted it to be me and Matt without any other visitors. It was nice to have that quiet time together. We both worked on our computers and chatted. Again, the chemo itself was mostly uneventful. My chemo nurse forgot to offer me ice chips/ice pop during the Adriamycin and I didn’t realize until an hour later. I made Matt run to get ice chips so hopefully the damage wasn’t already done. Now I am worried about getting mouth sores. Ugh.

We were done with chemo at about 12:30pm and I was feeling great. Matt and I stopped on our way home to have lunch and then went to a coffee shop to do work. At about 3pm, I left Matt and went home to rest. I completely crashed and napped for about 3.5 hours. I woke up at 7:30pm to read books to Aidan before he went to sleep but was still feeling totally exhausted. I listened to my body and stayed in bed for the rest of the night.

Day 2: I didn’t have a great night sleep and woke up feeling pretty groggy. Thankfully, my amazing husband got both boys out of bed and did the whole morning routine to get them ready for school. He even picked out cute outfits for both boys, packed Aidan’s lunch, and took them to school. I couldn’t even get out of bed and felt completely useless, which for anyone that knows me, knows that I hate. Aside from the exhaustion and fogginess, this useless feeling made me feel that much worse.

The only thing that I had to do that day was go back to NYU for a shot. After my first treatment I was able to do that by myself but I just didn’t feel sharp enough to go by myself this time. Luckily, Matt was able to get away from work for an hour to take me.

With the exception of going to get my shot, I spent the entire day in bed. I was completely wiped out. I wasn’t asleep the whole time but I couldn’t even focus enough to watch a TV show or read a book. I was in a total fog and it was pretty miserable.

I was able to pull myself together enough to read Aidan a book before bed but went right to sleep afterwards.

Day 3: After another night of not great sleep, I tried to wake up early enough to shower and help get the boys ready. At 6:45am, Matt looked looked at me and said, “Go back to sleep for an hour. I got it.” I was grateful that he noticed that I needed more rest but hated that I wasn’t well enough. Again, Matt did everything to get the boys ready, but I walked Aidan and Cooper to school. It felt nice to do something so normal, but I was so tired afterwards.

Other than fatigue, the side effects that I have been experiencing are headaches and insomnia. The last two nights I have woken up at 1am(sometimes prompted by a child), but I haven’t been able to go back to sleep. I had an appointment with my acupuncturist today and when I showed her where on my head I was feeling the pain and told her what hours I was awake in the night, she taught me that that both of those are somehow connected to the liver. The chemo is causing my liver to work harder which could be the cause of my headaches.

After acupuncture, I felt energized. It was a beautiful day so I decided to walk and sit in the park. I spent over 2 hours outside just walking and sitting.

I was able to be more a part of the boys’ bedtime but went to sleep right after dinner.

Day 4: Finally, I was able to get up with the boys, get them ready, and bring them to school. With each day I start to feel more and more “normal”, but I can still feel that there is something going on in my body. I just feel a little foggy and shaky all the time. I guess that’s a good thing because hopefully that means that the chemo is doing its job, but I hate the feeling.

Chemo Status: 50% through AC which they say is the hardest on your body. 2 out of 4 AC sessions complete with 12 more T sessions to follow.

Hair Transformation, Part 2

After a fun weekend with my Ruby Rose haircut, it was time to say goodbye to my hair. As I went to gel my hair on Monday morning, my hair stuck to the gel on my hands. My hair was shedding fast. I went to Bitz-and-Pieces to have my head shaved and my wig fitted. The experience of having my head shaved was not as traumatic or emotional as I had expected. It just felt like another item that had to be crossed off of my to-do list. I felt lighter after. If it wasn’t for my situation I would never have cut my hair so short or shaved my head. So, in a way, I am grateful to have had this experience.

While I haven’t had a strong reaction to my hair changes, Aidan is having a harder time with it. He has always been attached to my hair. He loved smoothing and rubbing it. At bedtime, he loved when I would shake my hair in his face. I had been preparing him for mommy’s haircut and that mommy would be wearing a wig. I even let Aidan try on my hat wigs to try to get him used to the idea. After my first haircut, I picked Aidan up from school and he didn’t even notice. I loved my short look and Aidan totally didn’t mind. His reaction after I shaved my head is a whole different story.

When he saw my shaved head he was noticeably scared. He wouldn’t come near me and didn’t want me to hug him. He asked me to cover my head and I did. He told me that he only wanted me to have real hair and not a wig (or as he calls it, a “rig”) . I listened and let him express how he was feeling but it made me incredibly sad. To have my 3.5 year old who usually doesn’t leave my side, now not want to touch me or be near me was incredibly traumatizing. I even suggested to Matt that we get Aidan “help” to cope through this. Matt, in his pragmatic ways, told me to give it a few days and that before we know it, Aidan would be back to being my little sidekick.

For the next few days I covered my head with a wig when I was around him so that he would see me with hair. Walking to school one morning he shouted, “Mommy, what’s on your head?” “A hat”, I replied. “No mom, it’s a wig!”

Just as Matt anticipated, it took him a day or two to adjust and let me touch him, but now everything seems normal. I was resting in bed wearing a beanie, without any hair, and Aidan came in to lay with me and didn’t even hesitate. I was relieved. Seeing me without any hair was a huge shock to him and I am happy that he realized that I’m still mommy, hair or no hair.

Hair Transformation, Part 1

On Friday morning, exactly two weeks after my first chemotherapy treatment, I woke up and put my hair in a ponytail so that I could go brush my teeth, only to end up with a clump of hair in my hand. I knew that this day would come and honestly, holding the clump in my hand wasn’t as traumatic as I thought it would be. It reminded me that these crazy chemical chemotherapy drugs are working and doing what they are supposed to do.

Since learning that I am definitely going to lose my hair, I decided that I wanted to donate my hair to Locks of Love. I have never been brave enough to cut that many inches off of my hair but figured that since I am going to lose it, now is as good a time as any. I reached out to Davide, the only stylist who I have let cut my hair since I moved to NYC (with the exception of one really bad cut that required an emergency fix) to see if he would help me do it and he agreed.

After spending the morning in Aidan’s classroom “Family Friday”, I walked into Davide’s salon for the big chop. He divided my hair into four ponytails and braided each of them before cutting them off. Holey Moley. Whoever gets this hair is a lucky duck. Holding the braids in my hand- my thick, beautiful healthy hair – was the most surreal feeling. Davide then went on to give me a super chic choppy cut that was way too cool for me but I loved it. I haven’t had short hair since my mom gave me an awful haircut before my kindergarten picture day (mom, don’t you dare share that photo). While this cut is only temporary, before it all falls out, it gave me a taste of what my hair is going to look like when it starts go grow back in, and I’m kind of excited about it.

Huge thanks to Rachel and Samo for coming with me to get my haircut and to Davide for supporting me through this hair journey. I could not think of anyone else who I would let come near me to chop 10 inches of hair! So grateful.

Slowing Down & Listening to My Body

Spending Passover with my family in Florida is something that I have always looked forward to. More than once (okay fine, every time), I chose to go to Boca Raton instead of spring break with my friends in Mexico. The only time that I ever spent Passover away from my family was during Semester at Sea when I celebrated the holiday in Japan- way too long of a flight to make it to Boca for the Seder. There is something about being in a room with 500 other Jews and eating nonstop that just feels like Passover.

When I was first diagnosed, the original course of treatment was to have the double mastectomy first and chemo after. When I was meeting with my breast surgeon, I asked if it was possible to delay surgery until after the holiday. She did not have any issue with scheduling the surgery for May 2nd, which meant that I would still be able to go on the trip to celebrate the holiday with my family.

Though my doctors were fine with scheduling the surgery for May, many of my family members (none of whom are breast surgeons or oncologists) felt that I was being irresponsible for prioritizing a vacation over my health. Needless to say, this was extremely frustrating. 

After another meeting with my oncologist, she recommended that because of the rapid growth of my tumor, she wanted to start chemotherapy as soon as possible, instead of having my double mastectomy first. This was April 2nd and the date of my first treatment was April 12th, 6 days before I was scheduled to leave for Florida. While making plans for my first chemotherapy treatment, of course I wondered if this meant that I would no longer be able to travel to Florida.

I spoke to my doctors and others who have gone through the same treatments and they all agreed that it is still safe for me to travel as long as I feel up to it. I would need to take precautions to protect myself from getting sick, like wearing a mask on the airplane and disinfecting everything, but other than that, I should have no limitations. 

Even though being in Florida with my family was exactly where I wanted to be, it was exhausting. Spending all day with Aidan and Cooper- swimming, playing, and entertaining them was a lot, but I loved every second. I was not allowed to go in the pool, as my Mediport is still healing, but I watched the boys from the edge and loved seeing how much fun they were having. We were making important family memories that will hopefully carry us through the summer. My family was concerned that I was overdoing it and should slow down but I didn’t want to. Because I knew that I will probably be feeling much worse in the coming weeks, I wanted to soak in every last second of feeling 100%, being in control, and doing whatever I wanted to do.

This statement, “as long as I feel up to it”, has carried a lot more weight over the last few weeks. I can listen to everyone’s opinions of what they think I should or shouldn’t be doing but the truth is, that it is up to me to decide what I can and cannot do. I know that everyone is just looking out for me but it my job to listen to my body and do whatever I want – as long as I feel up to it.

Overwhelmed by Support

When I decided that I was going to start a blog I thought that it would be an easy way to share updates with my close friends and family and eliminate the need to send 100 texts and emails after every doctor appointment.

After my diagnosis, I was put in touch with so many friends-of-friends who had gone through the same thing. I have spoken to different women every day, many of whom who have never met me, but still send me texts to see how I am doing. I was so touched that a community of strangers was so willing to share their time talking to me about what I could expect in the coming months. I decided that I did want to share my blog on social media in the hopes that someone else who finds themselves in my situation might stumble upon it and find it helpful. People have told me I’m brave and inspiring, but in reality, anyone that knows me knows that I’m not a private person and am happy to share anything and everything going on in my life. Good or bad, I think it’s important for people to open up as you never know who it will help along the way.

Matt always talks about communication and how important it is, even in the best of times. When things get tougher, it becomes even more important to over communicate to keep things strong. I take this with me not only in our relationship but with friends and family as well, and this blog is just another way for me to communicate.

On Tuesday afternoon, right before boarding a plane back to NY, I decided to post about what has been going on and share my blog on Instagram and Facebook. I did not anticipate the hundreds of responses that I have received. I am completely blown away by every single message of support. People who I haven’t thought about or spoken to in years took the time to send their good wishes. It feels really amazing to know that so many people are sending their good vibes and well wishes. It has meant so much to me and Matt and our hearts are full. Thank you.