A Love Letter to the Sun

This winter has been unusually cold, snowy, and long. My butt has fallen on the ice in my driveway at least a half dozen times already. Each fall makes you more timid. Last night, I looked at my trash can and had a mini panic attack thinking about taking it to the end of my driveway. Eventually, taking small enough steps, I managed to get it set out.

I always harbor a small amount of anxiety about falling. I am scared to death of breaking bones, even though I have never broken one. Sure, I have twisted ankles and bruised other parts of my body pretty bad…but the fear is the most limiting part. Some people enjoy others confronting their fears. Max loves to watch me fall and try to get up. Yes, if I was really hurt he would come and help…but sometimes you need to watch someone confront their fear and get over it as an extension of their growth. I imagine parents have a horrible time giving their children enough space to make mistakes in order to grow.

I have been growing a lot these days. Fear can be a horrible fixture when you are confronting disease. I was scared to death when I was diagnosed with cancer, but I knew that I couldn’t just spend all of my waking hours worrying. Thoughts about your mortality are always in the mix. My father in his seventies is always contemplating his inevitable exit. My aunt did the same when she was his age. It is not normal to do it in your 30s, but anyone who has cancer and doesn’t tell you that their mind is sometimes burdened by these crazy thoughts is lying.

As someone who has been really into the Law of Attraction, I often worry when these thoughts show up. I don’t want more of them. I don’t want to attract suffering. Unfortunately, my panic about these thoughts always leads to more. That is why you really need to get focused on something else.

I am in the last third of my treatment. Even though this is the time the doctors tell you that you might be at your weakest, I have decided to take on some stuff to get me ready for life after disease. I started teaching an English class at my local community college. I even auditioned and am rehearsing for a small cabaret show. Compared to my recent activities, this is a lot.

Not only am I managing my time and energy to do them, I am using them as a safe space to really relax into my new state of being. I usually hate processes and “the journey.” I often am pounding things out to get to the end result. Life is all about the journey. The more comfortable you are during it, finding ways to enjoy the process, the more you get out of everything.

I think being in the middle of the process was so difficult for me because I like things black and white. Tell me what you want and I’ll do it. This might be great in an employee, but it isn’t great when you are trying to find out what you really want. With my cancer treatment, I can no longer ignore my body. If I am exhausted, hungry, or hurting…I have to honor it and forget about what anyone else thinks.

Last week, I had my first infusion of my second round of chemo. I appreciated the time off from radiation. Still, I did have some anxiety coming back. I had handled the chemo well before, but there are always unknowns. This round I get a Neblasta shot 24 hours after each infusion. It is designed to make more blood cells to fight infection, but it magnifies the boney pain. Surprisingly, the boney pain hasn’t been too bad. My energy level is a different issue. I went to rehearsal on Monday and made it through two hours of choreography. I wanted to leave as soon as it started. My bones ached and I felt light, but I sat through the pain and made it through.

Yesterday, I saw a doctor for a radiation follow-up. She asked me about exercise and when I told her what I was doing, she was impressed. “You should be exhausted,” she said. I was, but there is a part of me that is always pushing though the pain. Even after a nap, I didn’t really have much energy. I eventually missed rehearsal. I felt guilty, but a little rest on this end will preserve me for the future of the production.

Knowing when to push and when not to is an extension of being able to listen to yourself, trusting the information you are receiving. Discovering my identity as a lesbian made me realize how much I had been trained to deny huge aspects of my personhood. This all comes from self-hatred and low self-worth. As I have been opening myself up, I am able to hear and feel more of my intuition. I still question it, but I am kinder and more open to myself.

Nonetheless, sometimes a person who has been so out of tune with themselves needs help. Every self-help book talks about the need for accountability partners or a support system. As I have grown older, I was focused on being independent. I kept so many of my thoughts and feelings to myself. I thought I was shielding others from my burdens, but I was only hurting myself. Plus, those people that you really do love and want to be close to really ache when you do this. Max and Alex are always asking me to dig deeper, tell them more, and be more vulnerable. It isn’t easy. I would rather get two IVs sometimes than to share certain thoughts.

Assertiveness can have a bad connotation to it. Who wants to be a bitch? Still, sometimes you have to say what is on your mind. One day this past week, I was playing a pool game on my new phone. I finally won a game and let out a huge yell. Max and Alex were taken back. According to them, my yell was a little “manish,” which was contrary to my normal self. Max stated, with some confusion, frustration, and anger, “I feel like sometimes I don’t even know who you are.”

Immediately, I felt a dagger through my heart. On one hand, I got it. It is hard to see someone you thought you knew change so much. It wasn’t in the contract. That is why family members often are enemies to those on a diet. Couples break up because one of them changes more than the other can handle. In reality, I am not really that different. The context has changed and I am trying super hard to get more comfortable with who I am.

Still, there is no one that wouldn’t have been hurt if their best friend had said the same thing. It was in this moment that I immediately clammed up and could no longer speak. Rationally, I had already forgiven him because I understood, but I needed to give voice to the hurt. It took me two days to finally say it.

I have taught lessons on conflict management and being more assertive. I know that one needs to communicate. The problem is feeling enough worth and confidence to just give voice to it. I can now feel the physical closing of my throat. I have red flags shoot off in my head that I need to say something now. Unfortunately, low blood sugar can flood emotions through your body and make you feel so unworthy that you just shut down. Embarrassment or lack of confidence can make you second-guess every word. You can imagine how ridiculous you must look or sound, and the last thing you want to do is be seen.

I treat myself as if I am doing something wrong when in reality, you know that a boundary has been crossed and you just want to acknowledge it. Concern for others’ feelings becomes more important than your health and security. In the end, the lack of action is more a slap in the face to yourself than anyone else.

Watching someone go through this might be as funny as watching someone fall and try to get up in their driveway, but it is as lethal as cancer. How many people don’t tell their doctors the full truth because they are embarrassed or afraid? I am guilty. How many people stay in an unhealthy situation at work or in a relationship because they are too afraid to speak up? Again, I am guilty.

Once you recognize the problem, you can work on it. But, it isn’t super simple. The old adage that if you make a mistake, you have to do it right 7 times in order to learn it the right way applies. Being aware is only one step. You have to exercise this assertiveness muscle over and over again in order to gain any sort of ease in doing it.

You are not an island. You will have to get loved ones involved. Hopefully, there are a few people in your life that you feel you can trust enough to work on this with. If you don’t have someone you can trust, you are going to have to take a leap of faith and go find someone. I no longer believe that I can keep my thoughts and feelings to myself. Writing helps. It can open up someone who is really closed up, but you have to develop connections with other living breathing human beings.

Of course, humans are not perfect. Sometimes you are going to take a chance and be vulnerable, and the other person is going to disappoint you, maybe even hurt your feelings. Hopefully, you are working with people who have earned the right to hear your business and have even proven themselves as friends and not foes. If this is the case, you have to continue the dialogue. Feelings are mucky. They are uncomfortable. When people are learning, or even when they are not at their best, you have to be willing to forgive them and move on. The real reason for this is because you so desperately want them to forgive you when you mess up, which you are going to do.

By building this resource, it is easier to confront fear. Fear is a dark room. The second you let in some light, you will be able to see. Fear can’t survive the light; it exists in shadows. All one has to do is flip the switch. Flipping the switch just entails softening the resistance, releasing a muscle, relaxing and just letting the truth flow instead of being pinched off.

_______________________________________________________________________

At my next infusion, I noticed an older woman getting an infusion next to me. She was crabby to herself. She had no one with her, and she held a wall of invincibility around her. She called to have her lunch delivered and handled the human interaction like a business transaction. There was an impenetrable wall around her. I can understand wanting to prevent the bad/sad energy of a cancer center from invading you, but this was deep. I saw the old me in her and wanted to give her a hug. Cancer cells spend a lifetime isolating themselves from the community of the body. They only absorb the supplies they need (or more than they need) and don’t give anything back, like the Universe owes them nothing.

When she left, a lovely older black woman took her place. She was warm and funny. She loved to make her neighbors laugh. She showed concern for another patient who had a bathroom issue. The entire time she was getting her infusion, she had a six-month baby girl on her lap. You could tell that she loved this little one and I was in awe of how much the baby girl just melted into her. She felt safe and loved. There was no other place that she would have rather been. This grandma and her granddaughter were the most beautiful thing in the room. The energy radiated from them was warm, soft, and comforting. Like a flame, you’re just drawn to them.

I want to burn as a brighter flame. I want to radiate love and warmth.

So, today, the sun shines. I feel the light and the warmth. I know it is going to go away soon, but I am making my vitamin D and am storing the glorious energy and goodwill. I feel lighter. I feel fuller, and I feel ready to continue to be brave and carry on with courage.

Radiation Recovery

I survived 27 treatments. Every day, I woke up around 10 am and got ready for an 11:20am appointment. Towards the beginning, I was super nervous. I would leave early, afraid that I would be late. The trip was 10 minutes from my house. I would slip in the parking lot around 11:05 and wait in my car until 11:15am. As time continued, I wasn’t so nervous and even began to come a little early.

When you walk into my cancer center, there are always some volunteers by the door. They are usually of retirement age. In general, most of the people at the cancer center are of retirement age. It does not go unnoticed that I am usually around the youngest one in the lobby.

I wait in the registration line until a receptionist calls me over. The same three lovely middle-aged women were there most of the time. One of them had my name. I would give my full name at first, but in time I just used my first. After a few clicks, I got a buzzer, similar to the ones at the Olive Garden, to tell me when it was time to go into the dressing room.

The dressing room was located behind a lock door that the receptionist would buzz me into. I walked through the door and turned to the left. The first door was the women’s room. Inside there was a flat screen TV on the wall, and some chairs. Two little booths contained 4-5 tall lockers with a key attached to a bracelet. In the cubby holes, there was a selection of hospital gowns to change into.

I could leave on my shirt, but I had to take off my shoes and pants. I would leave the underwear on. I tended to not wear a wig at these appointments because it would have just gotten in the way when I went back to the radiation room. I got really comfortable being bald in this area. Not the lobby, but behind the locked door of the radiation area, I rocked it.

Some days I had to wait a while. That could be in the lobby, or in the dressing room. Others days, I flew right in. The longest I had to wait was an hour. During the first wave of the “polar vortex,” I basically had the place to myself and just danced right through.

While waiting in the dressing room, I would see some women regularly who were getting their treatments. Usually I was alone, with maybe an occasional additional person. One day, there were 3-4 people in there, but that was weird. I sometimes chatted. There were older women, women with or without hair, a blind woman, and only one other woman that was within 5 years of my age.

I got used to watching The Price Is Right with Drew Carey. I used to watch it with Bob Barker for most of my young life, but had gotten away from it. It was light, fun, and it snapped me away from the solemn surroundings. When someone would change the channel to a local station’s women’s talk show, I would switch it back as soon as they left.

When my buzzer went off a second time, I would walk down the short hallway with my bald head and underwear clad butt to the radiation room. There were two right next to each other and I always went to the one on the right. At the doorway, on either side, was a desk with 1-3 technicians at it. Behind them were 3-4 huge monitors. One of them always had an x-ray of my pelvis. I would have to give them my beeper and my birthdate then we would enter the radiation room.

The door to the room was huge and made of steel. I immediately had to make a turn to the right and go down a long hallway. The walls were made of brick and covered with some industrial paint. At the end of the hall, I would make a left and on my right side there were huge cubby holes with casts of various patients’ bodies. I believe they were made to hold a patient’s body in the right position for treatment. They looked strange. Some unfortunate souls had to wear a helmet of metal mesh over their face and tied down to the table. Thank god it wasn’t me!

The room was fairly big. In the middle was a HUGE machine with arms. It had a huge monitor in the middle with numbers indicating the position. There was a circle on the ground before it. Up top, it had a part that jutted out that I assumed most of the radiation came out of.

By the hall, there was a bank of  2-3 computers. Usually a technician was fiddling with one. There would be another one by a long table. I had a contraption that they set over the table. It had a face hole like a massage table and a belly hole. Two angled pads helped position my thighs. On top of it were some linens. I laid face first on top of them. A technician would then put a cushion under my ankles.

Once in place, the technicians raised the table to right in front of the big machine. I put my arms above my head and my fingers would dangle off the edge of the table. There would only be a couple of inches between me and the big machine. I had three tattoos around my bottom. The technicians would pull back my underwear and try to match my tattoos up with set laser beams from machines bolted on either side of the room and the ceiling. If I was off, there was a technician on either side of me that would pull on the linen underneath me til I was in the right spot. Once set, a third technician offered coordinates from the back computer. They would adjust the table by millimeters. Once complete, everyone exited the room, except for me.

The huge machine would revolve around me. It could go 360 degrees. It would zap me from above, below, and either side. The zaps were extremely loud. It felt almost like someone was putting their foot on a pedal to get the machine to work. The zaps would last 5-10 seconds. On x-ray days (every five appointments), other elements of the machine would come out. A box like thing would fold out of the arm area and take pictures. Other instruments could fold out of other areas. I never got a super good look at it because I needed to remain mostly face down and not move. That didn’t stop me from taking a peak on occasion.

As soon as the treatment was done, they pulled the table back and down. I got up, readjusted my underwear and gown, and went about my business. Often times we would discuss things briefly: weather, weekend plans, and stuff. The technicians worked 10-hour days, four days a week. I got used to the carousel of staff.

On Monday, I would meet with my radiation oncologist for a moment. We never really talked about too much because my side effects with fairly mundane. I threw up once the first week. I began experiencing a different sensation when I urinated or defecated. It didn’t hurt, as much as felt different. If I needed to go to the bathroom, my wait time was super diminished. Towards the end, I did have a lot more diarrhea. I would take Imodium and it would help. My bottom would burn and I would use preparation h wipes, Vaseline, or hemroidal cream for relief. The nurses gave me an aloe cream for the back. I never blistered, but I did feel like I had a minor sunburn towards the end. They gave me a Rad-x cream with pain reliever in it for that.

Overall, the first week or so was the scariest. I cried a few times on the table while everyone was outside. I was scared, afraid that I had finally messed up my body to the point of permanent demise. You could get embarrassed about being in your underwear and being bald with no eyebrows….but why? I carried myself with my head held high and had fun with my technicians.

At the end, it felt weird. I didn’t really get to say goodbye to everyone. I did get a bag and an appointment card for a month latter. I was relieved to not have to go every day, but I sort of missed having a reason to get up and having a set of people to talk to. You can get a little depressed, so I tried to celebrate. I took my friends to my favorite pizza place. You have to celebrate these milestones. I can never have radiation in the same place again, so screw it!

It has been nearly a week since the end. I am still tired and sleep more than I should. It feels weird to know I have another three weeks till my last rounds of chemo start. I am nearing the end of this process. That in itself can be scary. I don’t know what my employment looks like. I don’t know what the rest of my life looks like. It is the kind of uncertainty that can mess with your head. Still, I am very optimistic. Sometimes you just have to keep your focus on moving the ball ahead that is right in front of you.

Christmas Eve at the Cancer Center

Today I had my fifth radiation treatment. To my knowledge, I still don’t glow in the dark. Besides fatigue, I have thrown up only once. Now I take nausea medication before treatment, just to be careful. I received the treatment through my back. The skin seems normal. It is a little tender. Like I have been out in the sun. The whole process has given me the perfect reason to buy new underwear, since I have to lie bare bum up to the world. I now try to open my eyes and take a peek at the big machine hovering over me. I still can’t get a great look at it. When I hear this loud sound with a bang, I am still a little nervous.

Everything appeared normal when I got to the cancer center this morning. The parking lot was almost full. The waiting room had a ton of people in there. Normally, I would be sent right back, but I waited nearly an hour before I was summoned. They had scheduled afternoon appointments in the morning because they were trying to close early. Only one of the machines was attended. After I got dressed, I sat down in the dressing room with one other woman. She seemed about my age.

We began to chat it up. She was probably the first patient my same age I have come across during my treatment. She was getting radiation for breast cancer. She is working as a school aide during treatment. She is trying to get a teaching degree, but had to hold off student teaching in order to get treatment. We talked about our treatment ups and downs, how we are handling “life” in general.

I felt a sense of comraderie with her. When I got called out for treatment, I was a little bummed to leave her. She was one tough cookie, and she made me feel like us tough cookies need to stick together.

After the machine did all of its clanging, I got dressed and walked out to the car. The waiting room had only a few people left and the parking lot was almost empty. Time for everyone to take a well deserved break. On to the next Christmas festivity…

About to Pop the Radiation Cherry

So, it is almost here. Last week, I went in for my “simulation.” Although it sounds like an initiation ceremony for the Borg, it was a planning session for my upcoming radiation treatments. In my case, I have the pleasure of laying bare ass up on a long rectangular table. There is some sort of contraption that I lay on that has an oval for your face, like where you place your head on a massage table, and a big square hole that I lay my belly in. My face is down the whole time, so I really don’t see much of the ginormous machine baring down on me. On the first trip, I had a pleasure of a vaginal exam and three tiny tattoos. (my first ever) Today, I had the pleasure of x-rays.

I will be undergoing these treatments for the next 25 days (excluding weekends, Christmas day and New Year’s day). I will finish sometime at the end of January. I have to tell you, for some reason I am really nervous. I got home and slipped an Adavan for anxiety. Everyone says radiation is easier than chemo, but you still get nervous because it is the unknown. I already feel like I have betrayed my body. Although I am doing this to prolong my good health, there is a part of me that questions if I am not instead doing more harm.

It is at times like these that I just have to surrender my concerns to the Universe. It is out of my control. My intentions are pure. I have to trust that someone more powerful than myself is looking out for me.

Limbo

Since my surgery on August 27, I have been resting and waiting for the next step. I was given two options. I could do a clinical trial that was similar medication for 18 weeks or standard treatment for 25 weeks. For some reason, this became a huge decision. There were a million reasons why I could have selected either course.

The switching back and forth of opinions was taking a toll. I asked a lot of people what they thought, and no one had the balls to tell me what they would do. It became clear that no one wanted to share a real opinion, leaving all the heavy lifting to me. After feeling so good, I began going through painful mood swings. I felt as if I am really fucked up. The fact that I had cancer and this could be life threatening kept entering my mind.

I started having thoughts about death. Immediately, I would want to push them away. I became scared of them. The more I avoided them, the more they returned. I knew I needed to make a decision because the limbo was killing me. Eventually, Alex said, “If it was me, I would just go with what they know works.” So, I did.

I decided to stay with the standard of care. After I let the doctors know, I immediately tried to second-guess my decision but was able to stop that train of thinking. I had a good week before treatment would start.

During this time, I have eaten my favorite foods, including cupcakes, and have made it a point to do something fun every day. I have no idea what I am going to feel up to doing after I start this stuff.

Currently, I feel great. I feel normal. My incisions are almost healed. I have a little hair sticking out of one that I believe may be a stitch. My organs have sort of settled, or at least I am getting used to them. My thighs are still a little numb, and my left leg has some definite weakness. It is hard to move my leg from left to right. I don’t know if this weakness may also be causing my left knee to feel really weak. Almost crunchy.

I have had people check up on me, but nothing too crazy. I think people hear I have cancer and want to treat me as if I am some sort of burn victim or super sickly person. I don’t feel that way currently. It almost seems like a downer to them that I feel so good. Other people choose not to ignore my current status, and that feels okay to a point. I broke up with my first girlfriend because I couldn’t handle worrying about someone other than myself.

I have I have about 19 hours before I have to go in for my first chemo treatment. Alex is going with me, and I couldn’t be happier for the support. I feel like my house has to be clean, groceries bought, everything ready before I go. But, there is a huge part of me that is like…go out and enjoy yourself.

This whole time I have been off of work. It feels weird. The school year started and is now in full swing; I wasn’t there for any of it. I think Americans feel like they almost don’t have any worth unless they are working their balls off for someone other than themselves.

I am really trying to use this time to focus not only on healing, but becoming the real me. I have tried for so long to conform to what I thought I should be based on other people’s opinions. I have got to stop. It is an addiction and I need a 12-step program to get out of it.

I know people talk about women feeling the tick tock of their fertility clock. Now that mine has been dismantled, I just hear the phantom tick tock of the countdown to my first infusion.