Raising Hope

Well, it happened. I have completed my last chemo! The day seemed to come and go so fast. The pricks were painless. I got hugs from doctors and nurses. I slept through most of my infusion, which was odd for me. Before I knew it, it was time to say good-bye. I almost forgot to go back for my Neulasta shot the next day. It was the only appointment that had slipped my mind during this whole fiasco. My next appointment isn’t until June. It is just hard to believe.

My doctor said that patients often ask her when they will start to feel like their normal selves again. She said that she has seen people feel normal within three months; some patients said it took more like 18. I have been doing fairly well during this whole thing, so hopefully I am in the 3-month category.

I don’t look forward to the boney pain that will be coming any moment now, but knowing that it will be the last time does make me feel a little bit better. This whole cancer journey has been life changing. You can’t go back to the way you viewed the world before.

Alex took me to the cancer center this last time and commented on how placating everyone was. They expected you to feel sad, bad, or scared. There are a lot of “I’m sorry” or poor you talk. It is as if the professionals don’t know how to really talk to you, but they feel like they have to semi-care. Their words are hollow, or they don’t really say the tough things they sometimes needs to.

At the beginning of this process, I brought a set of people with me every time I went to the cancer center to ward off this bad buzz. I knew that if I got hooked into the gloom or sadness that it would set me back. As the time continued, I realized that I had built up enough of my confidence to be able to let this energy role off my back without a buffer.

I feel pretty good. I know that I am not a victim. I had a little health setback, got my tune up, and am ready to roar again. So, I guess this becomes a cancer survivor’s blog. Trust me, I still have a lot to learn. I will struggle to get back on my feet and will fail on occasion as I take some of my new skills into practice. I need to rebuild my stamina, figure out what to do with my career, find a new place to live, and search to find love and other meaning in my life. I am also going to have to learn that the journey is not a means to an end, it is meant to be explored and enjoyed along the way.

I want to share another little something with you.

As a birthday present, I invited my sister over to Alex and Max’s to work on her “clown” face. Since my sister was teeny tiny, she has wanted to be a clown. It actually runs in the family. My grandfather was a magician clown and worked at the clown museum in Baraboo, Wisconsin. My sister always dreamed of going to Barnum and Bailey’s clown college. Of course, as so often is the case, as adulthood came calling…people pushed her away from her dream and it was put in a box and shoved into a closet.

As Alex, Max, and I began realizing that maybe those childhood dreams are worth pursuing now as an adult, we shared this knowledge with my sister and encouraged her to take another look at what really brought her joy. I have taken her to costume stores and have helped her find costumes and make-up. Alex finally took the day yesterday to show her how to use it and came up with her new clown face.

It is beautiful!

I encourage you to find your inner child’s passion and pursue it too. It is worth rekindling.

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.

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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.

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.