Hair Today, Gone Tomorrow

In my last post, I wrote about the fun we'd been having with hair color, from pre-surgery through the first however many chemo treatments. Well, after chemo treatment five, my hair started falling out. I also started experiencing more nausea and difficulty with my appetite. As soon as I started seeing a decent amount of hair come out after washing my hair, as well as noticing it falling out when it was dry, I decided it was time to take it all off.

There is so much societal stigma around a woman being bald and I wanted to jump into the pool with no hesitation. I announced I was going to do it on facebook, but didn't give specifics. I decided I still wanted it to be a semi-personal experience. I asked Anni if she would photograph it happening and she agreed. We gathered once again at my friend's barbershop, Moe's, and I never looked back. My friend Anna asked if she could join us and shave her head in solidarity. It was kind of nice, having someone else there who was more nervous than I was, haha.

Jess, Anna, Carrie, and I.

Anna and I, before.

We each got into a chair and had two friends, Jess and Carrie, get to work on us. Anna actually went first. I sat and watched Jess shave a stripe down the middle and then we knew there was no turning back. Carrie started on my hair and was very careful to shave each section and then hand it to Sam for safekeeping. We put all of my hair into two baggies - one for the longer, colored hair on top, and one for the shorter, darker hair. I plan on using my hair in an upcoming art project and this ensured that I didn't lose any. I could have waited for more to fall out, but I knew I was ready and didn't want to risk more going down the drain.

It is a very liberating experience and I honestly found it to be very freeing. I'm pretty sure Anna would agree with me. I was relieved to look in the mirror and realize that it was a done deal. And it didn't hurt that I was actually happy with the way I looked. Let's be honest, one of the biggest fears associated with shaving your head is that you won't like how you look. Both Anna and I have found that an added perk of shaving your head is how many women will come up to you and tell you how sexy it is, or how beautiful you are. It's a great ego boost.

Almost finished...

Anna and I, posing with our friend George. Bald is beautiful!

It took my wife a little time to adjust to seeing me with no hair, as she is usually the one shaving her head or sporting a mohawk, so the tables were turned on her. Fortunately, she doesn't care if I have hair or not, as long as I'm healthy and happy. I will have this look for a while, so I'm just glad we are both okay with it.

Anna and I, after.

Gotta love a supportive friend like Anna.

I think this photo says it all.

Three Down, Fifteen To Go

Yesterday I completed my third chemo session, which means I have completed one three-week cycle. Week one I receive two drugs and week two and three I receive one drug. And then we start all over again the following week. This will continue until we have completed six cycles, or eighteen weeks total. I've decided to start counting down from eighteen, so it will feel like the numbers are getting smaller, rather than starting smaller and working my way up. For whatever reason that is making me feel better from a psychological standpoint.

I am very fortunate that I haven't really had any negative reaction to the chemo drugs so far. I feel pretty good during the day and am able to accomplish small tasks without any issues. I know to expect to hit the wall, so to speak, in the afternoon/early evening. I just feel tired and want to do things that don't require much mental or physical activity. Yesterday, when I hit that point of being done with the day's activities, we watched episodes of Orange is the New Black and snacked on popcorn and kale chips.

I've been using some of my current energy to plan artwork and collaborative pieces for a series of artwork that will be about my illness, as well as my surgery and loss of my "lady parts". I roped Sam into working on it with me and now we have two other friends collaborating with us. It makes me feel good to be working with other female friends who work in different mediums on this. So far there will be photography, fibers, mixed-media, and ceramic work included. I am really excited about it and am hoping to find a gallery in San Francisco that will be interested in giving us a show. I was also considering Seattle, but SF is my first choice.

I spoke of my three-week chemo cycles. My friend Maria will be photographing me at the end of each cycle to document my physical appearance as I move through this process. There will be six portraits total. There will be a few other pieces that are personal, but otherwise we are working on expressing universal ideas and feelings that represent women who have had hysterectomies and also the notion of what makes a woman a woman. I've been asked if losing my "lady parts" means I am less of a woman. I say anyone who puts individual parts above the whole of a person is missing the big picture. If my doctor told me tomorrow that I needed a double-mastectomy because I was at high-risk for breast cancer, I wouldn't even hesitate to say yes.

Why do breasts or a uterus define a woman's worth? I recently was told of a woman who was diagnosed with breast cancer who was refusing surgery because she couldn't live with the thought of not having breasts anymore. Now that I am looking at things from the other side of a cancer diagnosis, I would never refuse a surgery needed to save my life. Don't get me wrong, I don't blindly follow what I'm told to do, but I thoroughly research things and ask questions and make informed decisions. Refusing a life-saving surgery because others want to define my worth by my breasts or other bits is something I couldn't reconcile. I also am fortunate enough to have a spouse who prioritizes my health and well-being over whether or not I have certain body parts. She sees me as a whole person and would never love me less because I had my breasts removed or, like my current situation, had a total hysterectomy.

I am really excited to see where this series of artwork takes us. So many great ideas have already presented themselves and I know there will be more as the weeks and months of chemotherapy go on. It's a great way to distract ourselves and keep ourselves busy during our down time. Yes, there will be a lot of uterus-related work, but then that is the center of where this whole new reality started for me. There is no room for feeling shame over talking about lady parts. If anything, we need to be more open and able to discuss them in public in order to guarantee cancer-screenings and health care for all. Early detection is what saves lives and I am a prime example of that. The word uterus should not bring shame to anyone, although I have made a grown man blush by simply uttering the word out loud in front of him. I'm actually pretty proud of that moment, because he is the kind of guy who thinks we just shouldn't talk about such things. I disagree, obviously.

Say it with me, "uterus, uterus, uterus". See? It isn't really a big deal, now is it?

Chemo 101

I now have my first chemotherapy session under my belt. There really is a lot of anticipation and build up until you get through it and realize that, hey, maybe this isn't going to be that bad. I checked in the day after my port was installed and was thankful that my doctor was awesome enough to leave tubing attached to the port, so no one had to push on my chest the day after surgery. There still was the removal of all of the protective tape, followed by the comment, "Oops, it's bleeding a little." It was cleaned and then the tubing and port were flushed with saline, to ensure things were working correctly. I later realized how important this is when I saw a fellow patient drenched in clear fluids from their i.v., possibly their chemo meds.

The port, one day after surgery, with tubing attached.

The world's best phlebotomist works at my oncology office. Seriously. Do you know how many times I've had blood drawn in my life and by how many different people? Let's just say enough to qualify me to make that claim. When she drew my blood, twice, I never felt a thing. She is a goddess. She is the one who flushed my tubing out. She also is the one I had told on my initial visit that I wanted to take home my parts after surgery. Now, 3 weeks out from surgery, she remembered me and asked me if my doctor let me take home my parts. I told her no and she was bummed for me. She also told me stories about doctors photographing parts removed for patients and I instantly felt disappointed that my doctor hadn't made that happen for me.  When leaving her office I heard her tell the next patient, "She's an artist. She wanted her parts back after her surgery, for a show in a gallery." I heard them both speaking in excited voices and it made me smile. My reputation at the oncology office was cemented as the crazy, but likeable artist who was going to make art about her cancer.

The world's best phlebotomist in action.

We were ushered back into the chemo lounge, as I like to call it, and were told to help ourselves to any of the snack foods or beverages we wanted. There were chips, crackers, coffee drinks, juice, etc. It was very sweet, but I couldn't eat any of it since it was all processed and mostly had sugar or things I don't allow myself to eat. Luckily, we were prepared with snacks and such and since they told us we would be there for most of the day.

The first time you have chemo they run both Benedryl and steroids into you in order to prevent an allergic reaction. I had been slightly fearful of having a bad reaction because that would then interfere with my healing. I sat in the recliner and watched the bags of fluid drip through the tubing.

Next, the nurse brought out two bags and presented them to me like one would bottles of wine. She explained to me which drugs we were administering, as if she were speaking of the vintage and characteristics of what we were about to enjoy. I enjoyed the process. The drugs were given one at a time and I sat waiting for any sign of a reaction, yet it never happened.  Whew! They bring out a tray with medicine they can administer if you start to have a reaction, so it's sitting next to you the entire time, making you think about what is happening in a more serious light. I am very grateful that there was no reaction and I was able to breeze through both drugs at a decent pace. Apparently, if you have a reaction, they administer drugs and then go back to administering the chemo drugs, just at a slower pace. I was grateful to be able to get done with everything quickly and a couple of hours ahead of schedule.

I had been told by a few people that getting the first chemo treatment would be very anti-climactic. It was. I'm grateful that my body took the meds so well, without complications. I'm grateful that I have energy and am sleeping and eating well right now. The nausea has been kept at bay and I am using a minimal amount of medication right now to counter any side effects. I know that this is an accumulative process and I will most likely hit the wall at some point when enough of the chemo drugs have accumulated in my body. I will probably lose my hair and be tired all of the time. I may lose my appetite and have a strange taste in my mouth all of the time. That's okay. I'm okay with it, I really am.

Every day I hear stories of people who have survived all of the things I'm going through and worse. I also hear stories of folks dealing with far worse circumstances and I cannot complain. In a couple of days I will be back in chemo for my second round and I will keep doing so for 16 more weeks after that. What is this week's silver lining? We are going to meet the giraffes at the zoo the day after I complete chemo. It is a lifelong dream of mine and it's going to happen. I am over the moon happy about this wonderful gift my mother-in-law is making happen for me. Life is good. In this moment, it's all about perspective and gratitude.


*photos by Sam MacKenzie*