Hair Loss After Chemo for Sarcoma, My Son's Point of View

I can't imagine or pretend to know how it feels to lose your hair because you have cancer and the chemo causes your hair to fall out. I only know what I saw with Mathew and years ago, my sister Elizabeth's experience as they lost their hair to chemotherapy. But it was something that affected Mathew more than just the initial hair loss, it had nuances. Here is a journal entry. It's short but I think it speaks volumes.

MATHEW’S JOURNAL

5-23-14

Lately, I’ve been envious of people’s hair. Well, I guess not envious of other people’s hair but missing mine.
I told my Mom about it and expressed to her that I was afraid I was falling prey to vanity. She expressed the idea that I may be missing having hair because it’s part of being healthy.
I do miss having a life and at the same time, I’m afraid that I may never have a full life again or that I may lose what’s left of the one I have.

- I’ve been thinking about dying a lot lately. I don’t know why it has hit me so hard this week. I guess because my next five-day cycle of chemo is coming up.

- I described the five-day chemo to my friend Carol(who is battling skin cancer) as the closest thing to hell that I’ve ever experienced.

I remember having this conversation with Mathew, about his feelings about his hair. The idea that hair represented good health felt like inspiration at the time. An answer to one of those answers a parent has for a child's questions. An answer that seems to come to us from a place deep inside of us. A place that has answers to unanswerable questions. Answers to help a son wonder why he is dying.

I still am looking for answers. I hope this blog helps me find them and possibly helps someone else find theirs.

If you want to see photos of Mat's hair, before and during, see the second part to this post, my point of view.

About this Blog, A Journey Through Sarcoma

Confections for Cats, A Journey through Sarcoma is a chronicle of my son's journey through Desmoplastic Small Round Cell Sarcoma. It is intended to educate and inspire by using Mathew’s thoughts and feelings, dreams and fears through a variety of mediums; art, music, and writing. Through factual experience, what we learned and what we wish we had known. Mathew’s desire was to give meaning to his journey and in the process help anyone else on a similar path. The last possible explanation in my mind for my son’s health problems was cancer. Even the words “the scan shows a large mass” didn’t lead me to conclude cancer and when the cancer diagnosis was confirmed, I still wasn’t prepared. My Mother is a breast cancer survivor and my sister Elizabeth passed away three years after her breast cancer diagnosis. I thought I knew what cancer treatment and living with cancer looked like, but none of us could imagine or be prepared for how all semblance of routine and normalcy had alre...

When a Cancer Patient Has a Medical Emergency

3 Days in the DRC, Part 1 If you haven’t read my first post about the DRC at Moffitt and how it works, since Moffitt does not have an ER, you can read about it here. https://confectionsforcats.blogspot.com/2018/04/neutropenic-fever-after-ie-chemo-and.html In summary, the DRC is where an existing Moffitt patient is directed to go if they have a medical emergency. Usually, we would be there a few hours or overnight (since we arrived at midnight or shortly afterward) until they had a room for Mathew on the ward. This particular visit Mathew stayed in the DRC three days. As mentioned in my other post, the DRC has maybe two rooms with a bathroom; otherwise, one bathroom for about a dozen patients. In Mathew’s case, a patient with a lowered immune system. This time Mathew was in the room furthest from the bathroom. When inpatient, we had a routine for getting him to the bathroom. First, he needed the IV unplugged (often quickly) and most times, I ...

Confections For Cats

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