Tori Amos Concert - Another Bucket List Item Completed

Tonight I attended the Tori Amos concert. I was so very ill yesterday and at around 2am, when I was throwing up at Sam's house, I seriously didn't think it was going to happen. Fortunately, I came home and finally fell asleep around 4am. I woke up feeling okay and decided to go for it. I only ate snacks and made sure to re-hydrate after the previous day's bout with illness. I consumed a smoothie and all of my supplements. I took all of my meds, including anti-nausea and anti-diarrhea pills. I was taking no chances.

My mother-in-law, who volunteers at the Oregon Zoo where the concert was being held, stopped by to pick me up. I was going to get in line early in order to save seats for everyone who couldn't get there before the gates opened. General admission shows are a pain in the rear, but if you know how to work the system and when to arrive in order to be able to get decent seats, it can be an okay experience. I arrived with sand chairs, a quilt to sit on, and plenty of snacks and beverages. My mother-in-law loaned me her straw hat in order to prevent my bald head from getting sunburned. I was ready.

My fancy straw hat aka baldy protection.

 I stopped at the box office long enough to buy my ticket for the Lucinda Williams concert that's coming up quickly. My pal Lisa, who went to chemo with me yesterday had bought a ticket and it made my decision easier. Yep, I'm going to see Lucinda and cross another things off of the bucket list. Exciting! After purchasing my ticket, I caught the shuttle down the hill and got my place in line. While waiting I realized I was next to Tori super fans who follow her all over. These ladies had just come from Vancouver, BC and Seattle shows and now were in Portland. I think it's great if someone can pursue that dream, but personally, I couldn't afford it and can't think of a band that I'd do that for. When I was in high school, it probably would have been the Thompson Twins, but my passion for repeatedly seeing bands has waned. And of course, right now, I'm happy to feel good enough to make it to one.

The gates opened and I immediately headed for my favorite spot on the lawn. The people on both sides of me were very kind and helped me spread out my stuff in order to save room for 4 of us. Right before that, I started getting the shakes and knew I needed to eat something. Once I was settled I could breathe a sigh of relief and bust into my snacks. I also opened up a ginger ale that I had to sneak in. I figured the staff wouldn't really want a sick cancer lady to not have her ginger ale, so I didn't disclose that I had it when they looked in my bag. Whatever. It came in handy for sharing purposes too and my friend Anni helped me finish it off after she arrived.

Anna, Anni, Tara, and myself

Tara appeared and then Anna and Anni showed up. We had all made it! While waiting for the show to begin, I decided that I wanted to lay out on the quilt and rest across Anni and Anna's legs. As I lay there, looking up at the beautiful blue sky and feeling the pleasant breeze, I realized how happy I was to be there, in that place, with those people. I felt supported and loved. To have friends who let you invade their personal space like that and then sweetly touch your bald head, well, it's a gift from where I'm sitting. It was the highlight of my day.

This photo Anni took captured my joy.

The concert started and it was perfect. I can't get over how beautiful the sound was and I am so glad I didn't have to miss out on that experience. I found myself getting a little bit weepy when Tori sang "Silent All These Years". It made me think about how far I've come over the past 5+ years. I left behind an abusive relationship, unhappiness, and self-loathing. I embraced happiness, light, self-love/care, and found a completely different life for myself. I found the love of my life and the best friends and community I could ever hope for. I am proof that you can change your reality, even if you are over 40 and feel like completely giving up. In case you haven't heard it - Silent All These Years.

Tori performing. Photo by Anna.

Photo courtesy of Tori's people. The view looking out at us.

The set list.

This is why I embrace the little things. Yes, cancer is a jerk and it may even end my life sooner than I'd like, but I am owning every moment that I can and appreciate certain feelings and situations, which I never did before. After yesterday, I can't even describe how it felt to be able to be out, experiencing such a perfect day with people I love. The feeling of resting against people who get you and support you no matter what, well, it is a gift. Being able to feel those emotions and then laugh and smile and hug those people, it's truly priceless. On the way home, Anna drove with the windows down and the stereo blaring Tori songs. As we drove along, we felt happy and free, watching the Portland skyline pass by. I decided I needed to snap a few photos. Once again, special thanks to the ladies who shared in this magical evening with me. xo!

Anna driving, and singing.

Anni singing her heart out and making rabbit ears. <3

Disco Inferno Chemo Day

Today was my chemo day (I go once a week, in case I haven't mentioned that before). It was appointment #8 and for those who are keeping count, that means next week I will be officially at the halfway mark.

Lisa and I

Today my friend Lisa went with me and she decided we were going to have a disco themed chemo day. She brought wigs and glitter glasses, as well as small disco balls and buttons to give out to the staff that said things like "boogie fever" or "disco diva". As usual, the staff really appreciated the fun gesture and my doctor even put on a wig and glasses for a fun photo op with me (He really is the bestest). We sat and visited in the chemo room and people seemed to like our matching wigs and glasses. Since neither of us has much hair right now, it was kind of fun to take the wigs off to "wig" people out a bit. Haha, Wig jokes are fun.

Me, just being goofy

Dr. Rushing and I

Justyne asks, "can you dig it?"

Everything seemed normal and went smoothly. Part of the way through treatment I started feeling a bit nauseous. I normally feel fine. After I got home I experienced 4 hours of a horribly upset stomach, which is really odd for me. I'm trying to figure out if I'm at a point where my body is doing what it wants and I just have to hold on for the ride, or if I'm just having more off days and it shall pass.

Disco ball mania!

Lisa's wig and glasses on my foot

Disco balls make treatment more fun, yes?

The sad reality is that cancer messes with you, on a physical and social level. I don't feel like doing more than lying on my bed with my dogs right now. Tomorrow night I'm supposed to attend a sold out Tori Amos concert with a few friends. I'm not sure what to do. We could sell our tickets or I could suck it up, hope for the best, and maybe have a good time. I'm hoping my body will give me a clear answer early in the day tomorrow. I'm contemplating going with Lisa to see Lucinda Williams at the end of the month. It's a bucket list kind of thing. Both concerts are artists I've never seen before and always wanted to. Why does my body have to make this so difficult?

Cuddling with Gumdrop makes being sick more tolerable.

Gratitude

Last week, while I was at my oncologist's office, I was told that another patient had passed away. He was a young guy and I remember seeing him during my first few visits for chemo. It is very sobering to be in treatment and to hear other patient's stories and to also hear of those who have lost their battle with cancer. I know friends who have had and do have cancer. I have heard many, many stories from others, both good and bad. I definitely do not feel alone, but I am still adjusting to the fact that some people make it and some don't.

After hearing that bad news, I ended up sitting next to another patient during chemo who told me of his experiences with his chemo meds making him severely ill. He was facing 6 months of chemotherapy and was halfway through. To  hear his story was upsetting. It also made me realize how fortunate I am that I'm tolerating my chemo drugs so well. I have good days and bad days and am averaging one week of not feeling so great, followed by two weeks of feeling okay. It is a good place to find myself. It is very hard to watch others suffer and know that we really are only separated by a few degrees of reality.

I'm very careful to never lose sight of my gratitude. When I was younger, I definitely didn't have the perspective I have now. It's something I've worked hard at and have taught myself to look for the good things in every situation in order to not dwell in a bad place. It still happens, but I'm finally able to take a few steps back and tell myself that even bad things happen for a reason. I firmly believe the natural care I'm receiving is making a big difference. I cannot say it enough, there is a whole team behind me, invested in keeping me healthy and alive.I am thankful everyday for them and for the love and support I feel from my local community.

Friends are planning a birthday party/fundraiser for me in a few weeks, since I can't work for at least 11 more weeks while I'm in chemo. I am humbled and grateful for those who are putting their time and energy into making this happen for me. They say they're glad I'm still here, in their lives, and I respond by thanking them and telling them I plan on being around for a while. I've been trying to imagine what it would be like for me without this unconditional support. I think of those who are not as fortunate and it is heartbreaking, but also serves to remind me of how lucky I am.

I still find it kind of hard to believe that I have cancer. It's a thing we all talk about and fear will happen and when it does, it's very surreal. Maybe it's because I'm handling chemo pretty well or because it just seems too overwhelmingly depressing to accept everything attached to saying, "I have cancer". I have said those words plenty of times, but it still seems like it's just something I tell people and not the harsh reality I always thought it could be. Maybe it's because I'm seeing people every week who are on harsher meds than I am and who are facing harder paths. It makes me feel like I'm going through something not as tragic or upsetting. Maybe I feel like I don't deserve the same support as they do because I'm not as sick. Maybe I feel guilty for feeling healthy 2 weeks out of every month. Perhaps this will change as time goes on, if I do indeed get more ill as treatment goes on. We will just have to wait and see.

Right now, in this moment, I am focused on staying healthy and never losing sight of how much I appreciate the people in my life who are on this journey with me. I am not dwelling in feeling guilty and am letting depressing moments touch my heart and then go on their way. Toward the end of his life, my dad always said, "You've got to keep a positive attitude". He was dealing with congestive heart failure, complications from diabetes and a slowly deteriorating body. I love that he left me with that message and now that I am finding myself in the hands of healthcare professionals every week I keep those words near and dear to me. It keeps my heart happy and I cannot thank him enough for setting that example for me. Thanks dad. I love you!

It's Been 8 Weeks Since My Surgery!

Time is flying by. It's been eight weeks since I had my total hysterectomy and I'm actually finding it hard to believe I had anything done, other than the nicely healing scars on my stomach. Hitting the eight week mark is a big deal because it means I'm no longer under any restrictions. I can lift things, I can take a bath, I can go to one of the places I like to relax and soak and sauna, I can have sex (maybe that's tmi, but let's get real, it's a fact of life), and I no longer have to fear any of the possible worst-case scenario things that might have gone wrong after surgery. I did it. I'm free and clear and it was actually not nearly as hard as I thought it would be. I think because we prepared for all of the possibilities we'd heard about or read about, it was a huge relief when none of them happened. Whew!

Tonight I prepared a bath with a blend of sea salts from around the world, epsom salt, and some of each of the essential oils that I've been using under the guidance of a friend that help folks with cancer. *In case you are wondering, I use Frankincense and Geranium oil.* I started out listening to my Indigo Girls Pandora station, but during the second song, Sarah McLachlan's "Building a Mystery", the wifi connection cut out. Sigh. Talk about a mood killer. I was just starting to relax and had to dry my hands and open itunes instead. I scanned my album options and decided on Beck's Sea Change, an album that I've been listening to a lot lately.

It was really nice to lay in the warm water, smelling the oils, while thinking about how quickly time has been passing. Tomorrow is chemo treatment number six. Wowzers. That means I have twelve weeks left. That may seem like a lot, but I'm a third of the way through treatment. I'm stoked. I also found myself thinking about a conversation my wife and I had just had, about a possible road trip in August across the country, to visit my late-grandmother's house before my Aunt sells it. My mom recently told me that someone had shown interest in buying the old family farm and I realized that my grandmother's belongings that had remained after her passing would most likely be lost when that happened.

I'm interested in seeing what still remains of the lives of the women who came before me. Because I am genetically linked to my great-grandmother who died from endometrial cancer at the age of twenty-one, this has become and even more important mission. She never lived in the house, but my she lived down the street and my grandmother and mother both did. That house and its contents are all that I have left of that part of my genetic history.

I am hoping to retrieve certain items to bring back with me. My grandmother made most of her clothing, as well as quilts from those dresses once they had worn out. There will be photos and hopefully paperwork or letters of some kind. It is a bit of a treasure hunt, because I haven't been there since I was 13 and I'm going to be 47 this month. As I am planning a series of work around the subject of my cancer and the women in my family, I feel I need to do this. I feel I need closure on that part of my life, on the place where my brother and I were forced to spend every summer when we were growing up.

Many memories have been flooding back to me ever since we started discussing this journey. No one in their right mind wants to go to the south in the summer time. It means horrendously humid heat and there is no air conditioning at my grandmother's house. I remember it well. I was that fat kid who just sat and couldn't stop sweating, no matter what I wore or what I did. It was awful. I also have pleasant memories of eating sweet watermelon in the backyard and watching my mom and Uncle sprinkle salt on it. My cousins and I would forage for blackberries and return scratched up, but proud. My mom would make blackberry cobbler and we would sit around the kitchen table and eat it with vanilla ice milk. I also have fond memories of sitting on the concrete porch and the porch swing, where we would spend endless hours chatting or listening to thunder storms when they rolled in.

In this place in time, I am focusing on those positive memories. I'm allowing myself to be sentimental and thinking only of my connection to these women who I either never knew at all, my great-grandmother, Laura Ann, or the woman who was so serious she scared me into avoiding her as a child, my grandmother, Maggie May. What is important to me now is the link between us and the genetics and history we share. I want to acknowledge them, the place where my mom grew up, and where I am from. I want to stand on that porch one more time and listen as a thunder storm rolls in. I want to marvel at the red clay road that leads to the house, take some beautiful photographs, and then say goodbye. Fingers crossed, we're going to make it happen.

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.

Having Fun With Hair Color

When I found out that I was going to have a total hysterectomy, I decided to have a purple streak put in my hair by my friend Carrie who owns Moe's Hairstyling here in town. The day I did it, Sam decided to add a purple streak to her hair too. After that, a few other friends decided to do it as well, as a sign of solidarity. It was just a simple, fun thing to do in order to get me ready for the road ahead.

Sitting out on the patio while the bleach does its magic. Classy!

The two of us after the bleach treatment.

We also cut most of my hair off in order for me to not have to worry about my hair during and after my hospital stay. When my doctor came into the pre-op room before my surgery I told him, "I did my hair for you", to which he replied, "I see that." We laughed and then I was wheeled off into the operating room.

Pre-surgery purple.

A better view.

Eventually, the purple started to fade into blue and then teal. Today I was trying to decide whether or not I should color it purple again, but then I started thinking about the color my hair will be when it starts to fall out, or when I decide to shave my head. I intend on keeping my hair for an art project and I thought I really should go with red. This will make more sense once I create the piece I want to make and share it with you. The red will eventually fade, possibly back to a purplish color, but we will just see what happens and go with it.

Us today, with red and purple hair.

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?