First Taxol and Herceptin
I recently had shaved the remaining hairs on my plucked chicken head. I wonder if some keep the vigilant hairs because it is all they have left (in the way of hair) or if everyone prefers smooth and bald as an alternative. I am comfortable sporting my bald head everywhere, but am really comfortable with it sitting in this infusion chair.
My kids did not react much when my hair fell out or when I had the “hold outs” shaved off by Molly at an adorable little salon near my sister’s house, Petite Mollier. Molly used a ceramic tip, taking extra care not to nick/cut my head.
A few days later we took curly headed Asher to Mike the Barber in Fairfax. It was his first big boy haircut at a barber. To be honest, I was surprised at how much Mike was cutting after I had told him to just get it out of his eyes. I looked at Asher sitting so tall, perched on that board for little kids spanning the arms of the barber chair. With a big black drape around him, he was so proud to be getting a haircut like his older cousin Max, his Uncle Ray, his daddy. Almost immediately I let go of my baby boy as a baby, and while I was mourning those curls dropping to the floor I was also thinking about how light Asher was going to feel in this hot summer sun, playing, and in the pool. He, I am certain, never knew he could feel so good, as he only knew the feeling of that full head of hair, often poking him the eyes as of late. I spent the remainder of the appointment comforting Taylor who was distraught over what was happening to her little brother. ”Mom, make him stop. That’s my brother”. Taylor has trouble with change, and a few of us wonder if she had been holding in her emotions surrounding my hair loss, and then let it pour watching her brother lose much of his. Who knows, but last night she very clearly stated that she hated that I am bald. So, we are all doing our best to get through this, and in the end we will all be stronger.
A friend asked if I was having fun at least and I must say that for the most part I am. Parenting my six year old is more challenging that the cancer right now. It is the thing that I worry about at night. Being six is tough and being six while mom has cancer, displaced from home, is even tougher. We will get through that in one piece too.
The kids and I are staying in three different homes during our stint in Marin. They are all lovely in different ways. The first week was at a home where three children live. There were books, bath tub toys, lovely cooking pots and pans, a great garden, and a swimming pool! My family swam almost daily. It was a great way to wind down the day, and both of my children have improved their water/swimming skills.
The home we are enjoying now has childrens books, lovely playrooms, beautiful wooden toys, a giant sand box, a swing set, a great kitchen, a hamster named Munchi, and a dog named Morzsi whom I love. The next house has a beautiful garden, two dogs and a swimming pool too!
Which brings me to the point of this post. All the kindness in the world. Sharing your home in such a way to a family in need seems to me an ultimate act of selflessness and generosity. A home is such a private place with all of a family’s beloved possessions. To open that space up completely to another family is a great act of kindness. Our family is honored.
Mount Tamalpais has been calling my name since my arrival. Do other people in Marin note when they catch a glimpse from various towns, peeking between oak leaves in the least suspecting neighborhood? There are so many places from which to view the “Sleeping Lady” and my kids I am sure will always remember mom saying “There is Mount Tam”. I have been doing it for years, but now that we are living here for the summer he frequency is upped. I can usually see the top from my chair in chemotherapy, but today it is covered in fog.
I enjoyed Beatles Night in San Anselmo Creekside Park a few nights back and was appreciative of the people who said hello because they recognized me from this blog. I am always most appreciative of the survivors for letting me know they there been through it. It always takes me to a higher place. I will be one of those people soon.
I am on antibiotics for the third time since this started. This time for a mysterious hard spot on my left calf…..an infection of some sort or an issue with the vein? It seems to be clearing up. I appreciate the concern and immediate attention the Marin Cancer Institute provides regarding every little thing that turns up. In Eureka they were just as diligent when I needed antibiotics due to a wasp sting.
I am in the infusion chair right now getting the first of twelve weekly taxol and herceptin treatments. It takes about four hours. Last week I had an echocardiogram to check the status of my heart and it looks great so was able to stay on schedule with my medicine. Sunday labs showed that my platelets are a little low, but not too low. Just finished taxol and am about to switch over to the bag of herceptin…..the drug I am lucky enough to receive due to the clinical trial I am part of. I cried this morning on the drive here. Missing driving Taylor to her first day of a yoga and art camp. Aunt Melinda will have the honor.
I went to a gigong class at Gathering Thyme last week, and had acupuncture with Phil Madden at the Center who also does gigong in his practice. Phil is amazing with his healing abilities.
The Benadryl is making me sleepy. I must sign off. More about taxol and herceptin and other things later. XO.
hi, nicole : )
i have been thinking of you.
i’m so happy to hear of the special homes welcoming you this summer.
and that you get to be so near your sweet sister as you work through these weeks.
sending you love & strength from idaho ♥
I was away for two wks and was wondering how you were doing. Yesterday I had lunch w/a friend who isn’t a part of the blog network and she asked me about you. Know that many, many people in Arcata are with you in this! Love, Annemarie
parenting is a big job, the biggest job and it is a many years, entire lifetime endeavor, so if something is hard now, trust that with time it will unfurl. Our children respond so deeply to everything going on with us, especially daughters with mothers. I’ve covered this territory and I have a fabulous 27 year old daughter, but we’ve also spent years in struggle and fear on my part about her, especially from the ages of 9-17. Intelligent, sensitive, wise children is what we want, but they require everything.
The Jewish concept that has helped me the most and which I wish I had had more of when I was dealing with the hardest years of parenting is bitachon (absolute trust) in the Divine. This doesn’t mean everything turns out the way we want or like, but it means we turn our lives and all our problems over once we’ve done everything we can do. Obviously, you will continue to parent and live with integrity and goodness, so learning to trust that there is some greater power who has your back and your childrens’ and really the whole world is in the hands of the Divine, so all our worry is just the thing we are caught in.
There is also the greatest saying by Rabbi Tarfon: “It is not up to you to complete the task, but neither are you free to desist from doing your part.” As a parent this can be very useful. Okay, I fed my children, I loved them up good, I read to them, I am taking care of myself so I can be present for them, they have friends, they have art supplies, they have pools to swim in, grass to roll around on, etc… The rest of the task is not up to us/you. They have their own lessons and lives that are part of some ginormous spinning universal plan that we are not in charge of. Sorry if this is so long. I just remember parenting a very complex and sensitive, intelligent child, actually all three of my children come under that heading, but only one of them was a girl who is now an amazing woman. Big love to you as you navigate this territory.
Oh, my daughter shaved her hair when she was nine and said she wouldn’t have long hair again until rape was not happening on planet earth. Just one example of intense female children. She still has short hair. I have a great picture on my computer of her from this last May. She is shaking hands with the King of Jordon, on her most recent work trip helping to make peace in the world between Palestinians and Israelis. I miss her curls, and she still looks great, but I don’t regret her fierce determination or feminism or activism, short hair, long hair or no hair. Big love to all of your family and all its hairy iterations.
It’s good to hear from you again! I’m sorry that this is hard on Taylor, but I know you and Garrett are amazing parents, and all four of you will be able to make it through this time. I’m glad to hear that you keep trucking along, taking things one day at a time, and that your treatment is going well. Sending lots of love and light your way!
Hi Nicole,
We loved our visit with Garrett in Arcata and then you and the kids in Marin. Clearly you guys are making the best of a difficult time. Garrett misses the family but is working hard and checking things off his list. You are following doctor’s advice but also juicing, eating a cancer-free diet, having acupuncture, qi-gong, massage – if it is supposed to help, you embrace it. Taylor may find these days hard, but she also has a terrific example of how to take charge of a serious situation. You have our continued love and admiration. Thanks for making time for us – we loved it.
Mary and Sherif
Nicole, we still haven’t met, but I am following your post and journey, and am always inspired by your courage, honesty, and the sense of beauty that is infusing your journey.
We just rented our apartment to one of The Scoop’s employees, Chris. You guys sure have great taste in hiring employees.
Remember, let me know if you can use any organizing help with anything…I’m still here if you need me.
Barbara
Thanks Nicole for all the wisdom. I am sure others that read the replies here will benefit as well! Thanks. It is never too long. Thanks for all.
Thank you for another update. We have all been thinking about you and your family. You are an amazing woman and I appreciate your candidness and honesty. Not only are you doing wonders for yourself and family, you are encouraging so many to stay strong despite difficult obstacles. Much love to you! I hope to see you soon!
Hi Nicole- Thanks for sharing all of this as you experience it in real time, it’s remarkable. This post brought me back to my own date with the razor when I went through treatment. Just wanted to let you know that we’ve been thinking of you and know you will indeed be one of those people standing on the other side of this soon. Much love to you guys from all of us down here in LA!