Spiritual Bad-Ass

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Recently, I had the opportunity to be interviewed by author Debbianne DeRose for her new Spiritual Bad-Ass Tv YouTube series. The series highlights a bunch of Spiritual Bad-Asses who have a lot to say in how we can all get in touch with our Spiritual Bad-Ass selves.

The interview was a chance to really put the message of this blog in a nut-shell. Being diagnosed with cancer is an opportunity. For me, it was a catalyst to discover who I really am and make a choice to live a more authentic life. In the process, I discovered self-love, self acceptance, and got in touch with my creative self – through the healing art of drag.

Please check out the video and podcast via the link below on Debbianne DeRose’s website:

http://spiritualbadass.tv/mimi-mackensie/

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Another Op’nin, Another Show

I had an opportunity to do something great in these dull winter months. Max decided to direct an anniversary cabaret for the theater group that introduced us. It was small, fast, and had three shows. I think we had 6 weeks to rehearse, but it was punctuated with a lot of snow days.

I love to perform. I particularly like shows that have minimal rehearsals. Even though I was going through treatment, the fact that my best friend was directing and would understand if I needed to take extra moments to rest, or nights off to recuperate from chemo, made me feel confident enough to get out and give it a try.

I was cast to sing “I Can’t Say No” from Oklahoma. Back in 1997, I played Ado Annie for this same theater group. It was the summer that Max and I got close. Figuring the theater group was celebrating 40 years of performances, it was kind of great to have an original performer do one of their songs again.

At the beginning of the rehearsals, I was very nervous. I was surrounded by people I didn’t really know. I didn’t have the strength to stand two hours for vocal rehearsals. The first choreography rehearsal I had after chemo was excruciating. I didn’t think I would make it past the first 15 minutes. Every night, I continued on. I came to rehearsals without a wig and just a hat. When the elementary school we were rehearsing in became super hot, I even took my hat off. I started to rehearse without any head covering.

I got used to the freedom of not having to wear anything on my head. I had short hair. I didn’t mind rocking it as I got more comfortable. When I lost it again and got a buzz cut, I still went without a head covering which was a first. I started making friends in the cast and enjoyed having a place to come at night to dance, feel free, and forget about being someone who was going through cancer treatment.

My doctors allowed me to put off my next cancer treatment til after the show. I saw myself getting stronger. I started feeling like my old self again. At dress rehearsal, my sweats and baldhead were replaced with a wig done in fabulous pigtails and bold makeup. I looked like a different person. It was someone I remembered from a long time ago who would do these things on a regular basis.

I don’t know if I would have been able to perform as well if I had had chemo the week before, but I blazed on stage. I still got winded and tired, but it was manageable. I could see that I could get back into old form after treatment, and it made me hopeful.

If you are going through treatment, what is something that you used to do? Something you may have gone away from, but you still love. Maybe you don’t even think you can do it anymore? What ever it is, consider doing it. I knew that doing this show would be a stretch for me, but that was exactly the challenge I needed.

The show brought so much positivity into my life that other opportunities have opened up in my life. I found someone interesting to go out on a date with this Saturday night, I might have some new openings on the career front, and now I have a posse of new friends to inspire and encourage me through the end of my treatment.

As I drove away from strike yesterday, I realized that I was so grateful to have done this. I also became a little sad too. I think it is normal to experience a little post-show adjustment. I look at my piles of unopened mail, dirty laundry, and dishes and remember that I still have a lot of challenges ahead. My next chemo appointment is on Thursday, and I am not looking forward to sitting in a chair for 6 hours, or dealing with the fatigue and boney pain to come.

At least for a small window of time, I saw what life could be like post-cancer and knew that I wanted to be a part of it. Hope is precious, no matter what form it takes. So, here is to the next chapter. I am sure there will be more road bumps, but I am at least excited about the journey.

Taking Action

My third round of chemo came this week. There was no real fanfare. I am kind of use to the drill. It did take a lot longer than normal. I had a full examination by my doctor, which looked good. The infusion room was packed, so I was placed in some small back corner. It took a half hour just to get the IV in and another half hour to hang the first bag of pre-chemo meds.

I kind of felt like I was on the second string’s team in the back. I missed the nurses that I normally bond with, but I had my buddy Max with me to keep me distracted. Around noon, my father swapped out with him and brought me some lunch. All was normal until I started feeling a wave of heat flush through my body. I threw off any blankets or excess clothing and felt my scalp and palms clam up. The nurses came and stopped the IV. They took my pulse, blood pressure, temperature, and blood glucose readings. I got some extra oxygen because my pulse oxygen was a little low. I had to have a doctor come down and check everything out. We never determined if it was a reaction to the chemo or something as simple as a hot flash.

By the time we got back on track, I noticed that I was one of the last patients in the building. I expected to be held there for 6 hours, but I left after 8 and a half. I am pretty sure I was the last patient out of the building and it was a crazy feeling. I felt bad for my father but he didn’t seem to mind. I passed out early that night. I was exhausted.

I am now off for about four weeks. I go in mid December for a simulation for the start of radiation. I am a little scared about it. It will be every day for 4-5 weeks, right during the holidays. I am going to get my first tattoos ever just so they know where to irradiate me.

I am now on day 3 after the chemo and am feeling the bones again. This has been the worst part of the chemo for me. I may be a little more tired than normal too. Over all, I really feel lucky. I know so many other people have a worse time with this treatment. I am annoyed by certain side effects of the treatment but in so many ways it has not been a huge deal. Giving myself the time and space to recover can almost be more difficult.

I feel like recovery includes focusing on what I want my life to really be. So many people look at cancer as a death sentence or a huge loss, I am choosing to look at it as a way in which I can gain everything I have always wanted but made too many excuses to actually take action.

I don’t even know if I would have sought treatment if I hadn’t started this year with the focus of releasing judgment. I had so many strange opinions or perceptions of what I thought things should be. I was the meanest self-critic, and I couldn’t even see it. I knew I felt miserable, but I didn’t realize how much I was playing a role in it.

After you make a huge shift in such an area, it isn’t like you are immediately cured. Constantly, I have different events come back up to test me. I feel like the more I confront my bad tapes and faulty thinking, the easier it becomes. I equate it to building a muscle memory. Thoughts can be super powerful, or they can be nothing. It depends on what the feeling is behind it and how much attention are you going to give it.

I have been working super hard at confronting my negative thoughts. Having witnessed my parents’ journeys with cancer and mine, I think it is really normal to worry about your longevity. You might be doing something mundane and then think about what someone might think if this was the last time they saw you. Stupid thoughts. I have learned that when I get a thought like this, or one that is just not pleasant, I thank the Universe for showing me the contrast and flick it away or send it off.

I went back to the woman at the bookstore today. It was time for another monthly Shared Circle of Enlightenment. The energy was a little different from when she talked to Alex and I about our spirit guides, but I still felt like I gained a lot from being in her presence.

I talked to her about feeling the need to release resistance. I have grown so much, but I still resist doing things that I know I need to do or to relax and surrender more.  Besides confronting negative thought patterns, we had some dialogue on faith and trust. After my surgery, I knew the Universe had my back. I was so sure that the Universe was supporting me and giving me all that I needed. Now, a few months out, that same solid faith and trust had softened a little.

Alex and Max continued the conversation with me at home. One of the things that they hate about me is that I trust so very little. They even think I don’t trust them. In reality, I trust them implicitly. I trust them more than I do myself. That is where the a-ha came. It does seem a little backwards. I than asked Max, how does one build trust? He said, “through your actions.”

Sometimes when I read all these self-help books or meet these interesting people who help me see things a little clearer, you’ll feel better initially because you feel like…oh, now I understand. There is a little relief. But if you don’t put those lessons into practice, the Universe places little tests in front of you to see if you really get it. One way you might get ahead of the surprise quiz is by changing your actions to match what you believe.

Okay, I am the worst at this action-based thing. There are a million things that I should probably do or I know I should do…why aren’t I doing them? If having cancer doesn’t make me lose weight, what the hell else will? Good point. I know the biggest block for me is feeling worth the effort. As much self-confidence as I have built up over this year, I am still lacking crucial components.

I don’t know why I feel like I am so different. Everyone goes through this, but somehow I feel like I am supposed to suffer alone. I feel like everyone deserves love, but I often question if I do. If I felt abandoned during other portions of my life, which may have had nothing to do with me, how can I release that I don’t have to feel that way now? How can you have trust in faith that the people who love you aren’t going to hurt you or abandon you? How can you have faith that you won’t hurt or abandon you?

I can’t say I have any answers for these questions now…it is just what my mind is pondering. My goal for this week is to take some action steps to be kinder and more giving to myself. I want to celebrate who I am and feel like I am taking fruitful action to allow more to follow.

Overcoming the Disconnect

Life gives you a lot of opportunities to learn lessons.

The beginning of this week wasn’t bad, but I was definitely not on my highest flying disk. I know that I had slipped off after my hair was cut, but I couldn’t figure out what to really do about it. Monday came and I had to do a bunch of errands to pay some bills. It felt good to take care of some things that I had been neglectful of taking care of, but it left me with less than forty bucks to stay a float for two weeks.

Money has been a sore spot for a while. I have been so lucky that my school has had my back while I am out on leave. The union has been paying for my short-term disability. I am so grateful that they have my back, that I feel horrible when I feel like I am coming up short.

Like most cancer patients, I am sure a lot of us weren’t in a good spot financially before we got sick.  I was laid off and unemployed for a few years. How I was able to keep my house? I still don’t know. My bank account is in the perpetual red. I haven’t had money to buy clothes or shoes in years. All those times I bitched about money when I was younger, seem stupid to me now.

Anyway, whenever I pay what bills I can…I sometimes see the rest of the obligations I have and feel like a loser for not knowing how I will ever be solvent. Sometimes I don’t even know where to begin. It can be another cause of slipping off a high flying disk.

Of course, if you listen to the Law of Attraction advice, one of the best ways to stay in a place where you don’t have money is to focus on what you don’t have. So, for now I am trying to stay really grateful for what I do have…which is a lot when you think about it.

Yet, this little mental mind jockeying combined with a little self-conscience about my hair and nerves about getting a second infusion this week made life a little blah. I tried to make it a point to do some activities for fun, but I was thrown for a big curve ball on Wednesday.

I got home Tuesday night to find that my furnace wasn’t working. I knew there was no way I could afford a repairman, and my father is not always good in these types of situations. I covered up in every blanket I could get my hands on and found a way to sleep through the night. Michigan was getting cold. I could hold out for a few nights, but it isn’t like I could go through the whole winter without heat.

When I got up the next day, I had an appointment for a free massage. As I drove out, tears just streamed down my face. What was I going to do? I had to try and see if my father was interested in helping, but I hated the idea of asking him for money again.

I used my massage to calm me down. I was so sure that he would shoot me down that I knew that I had to reframe my thinking or I would get exactly what I feared. My energy and vibration lifted. I drove back home to find two packages and two cards in the mail. I had signed up with a group of Chemo Angels. Each cancer patient is assigned two angels who would send cards and letters to lift their spirits while going through treatment. It was an unexpected surprise from strangers. I opened them up and let the awe of knowing that these people really cared about me wash over me. I believe the massage earlier helped me to receive these gifts.

After I felt a little cheered up, I called my father. He asked me how I was doing and I said I wasn’t great. I told him about the furnance and he went into a mini tirade about bills and him being broke. I found myself begin to sob…I couldn’t even ask him for help. I felt so bad for needing help. I think he was thrown for a loop and kicked in saying that he would take care of things. It felt like he finally understood that I needed him to act like a Dad who knew his daughter needed help.

I love my father. I took care of him when he was diagnosed with cancer. I became his sudo wife when my mom died. I hung out with him a lot. Sometime after my sister decided to move back from Virginia, I began to distance myself from him. I spent so much time with him that I felt like I couldn’t have a life. I had taken a loan out for school before he got sick and used it to live on when I took a leave of absence to take care of him. When I became unemployed, I couldn’t pay the loan. This kind of became a sore spot. The funny thing is, he had just paid for my sister’s wedding and it was the same amount.

Now that I have faced the fact that I am a lesbian, I have trouble feeling like I am nothing but a big disappointment to him. In some ways, I am sure he already knows. Still, the dream that I was following for most of my life was one that I knew would be acceptable to him. Have a great job, a guy, maybe some kids. Be an upstanding citizen. Go to church. It was the path I am sure everyone feels like they are suppose to follow. The problem was, it was never my path. It is what I thought I needed to do, not what I wanted to do.

Still, I feel like staying true to myself is like becoming an embarrassment to him. Would he still be proud of me? Would he think less of me? The pain in having these questions answered is what keeps me away along with the fact that the reason I don’t drive out to his house is because I don’t have enough money to pay for the gas.

The boys are well aware of this dilemma I have with him. Max was getting pissed off because I didn’t want to ask my father for help in the first place. He was rather short with me during that day and than invited me over. Max apologized for getting frustrated with me, but he said that he saw me slipping into old patterns and it was pissing him off. Part of the reason why my father would get pissed when I called him in an emergency is because I never tell him what is really going on in my life. I have shut him out and it put Alex and Max in a strange position. It puts them in a place where my father would feel animosity toward them where it wasn’t necessary. My desire to protect my father from any obligation toward me is what makes him feel bad. The point is he wants and deserves to know me more and I am the one who is hiding, avoiding any display of the true me.

In order for me to continue to grow on this path, I need to be authentic and vulnerable in all areas of my life, not just with the people and places I feel most comfortable being it. Of course, the thought of being that way with my family was excruciating. So, the boys told me that they wanted to see my father at my infusion appointment. Immediately, I thought no way. First, how would you like to be tethered next to someone you have been hiding from for 6 hours with no way out? They said, maybe he needs to see his daughter hooked up to IVs and bald to understand that I am human and vulnerable. Maybe he needs to feel like he is contributing to my emotional needs and not always the financial ones. Maybe he still needs to know that I need my Daddy.

As the Universe usually knows how to manifest these things, my sister decided to spend the night in my cold house. Maybe to get away from her husband, maybe to feel like she was giving me some support. She took me to my appointment and drove back to my house to meet the furnance guy. She had already scheduled my father to come a little latter, but the furnance guy was done and gone before the original appointment was scheduled to even start.

I did my labs and met with my doctor per usual, without my posse with me. I knew that someone would join me at the infusion room, so I wasn’t too worried. They started with the pre drugs and I got a little sleepy. When I woke up, my father was there. There is a one person maximum guest policy in the room. He had brought me some lunch. It was nice to see him there. The thing is that I do enjoy my father’s company. We are buddies. I don’t have to say all the shit that is on my mind. What he needs to know is that I still enjoy his company and I still care about what is going on with him and his life, just like he wants to be a bigger part of my life.

We hung out for three hours, and my brother showed up from out of town. It was a pleasant surprise. They swapped out and had a great time. It was one of his last vacation days and even though he was having car problems, he still made it over. I got a beautiful picture from my nephew, and my brother made me into a zombie with a Walking Dead app on his ipod.

My brother suffers from the same painful lack of vulnerability that I have. We totally got it from our parents. We are so busy trying to keep up appearances that we kill ourselves a little bit. I have had a Renassance, and I feel like he may be on the verge of one soon as well. I believe that part of the mix needs to be us sharing what we have been feeling and doing with one another. The thing about sibblings is that we are genetically connected and we carry the same family drama and tropes from childhood. We can use each other to heal from those wounds so we can live more fulfilling lives.

When the infusion was through, I had my brother drop me off at Alex and Max’s. That way, I had someone to watch me until I feel a little more comfortable being alone. While my brother was there, I could feel him completely open up. We shared our drag videos with him, my recent art work, talked about all kinds of things and just saw him relax and unwind. He didn’t feel like he had to be anywhere or answer to anyone for a while. The release of responsibility is sometimes a bigger vacation than a trip around the world.

When it was time for him to leave, I basked in the day that I had. Just 24 hours earlier, I had dreaded the idea of what would happened…but now I realized it was exactly what needed to happen. In order to really heal, I need to be me. I need to have my family in my life.

The boys and I had some great conversations. We are a unit, maybe a dysfunctional one. I don’t have to worry about losing Alex and Max, but we do need to open ourselves up to more people and more experiences in our lives. We had been doing it, but when I slipped up…they got tripped up too. One of the favorite places for me to be is in their presence, but they made a good point as to say that I need to feel like I can achieve the same amount of happy with them as without them. My enjoying my house, my family, new friends, and/or new experiences should not suffer because I am afraid of not having it with them. In reality, having a great time without them is giving them a gift. The same goes for the two of them. They should be open to having experiences by themselves individually, or even together with out me. It is what fuels us and makes us enjoy each other even more when we are together.

It is not as if I didn’t know this, but I had always assumed that they placed it on my head like I was the desperate one. In reality, they told me that it is as hard for them to do things without me as it is for me to do them without them. One of the biggest ways I could help out is to be more assertive. I need to not be always available to them. I should voice my opinions more and take my leave when I know that I am drained as opposed to when I think they want me gone. They had become as dependent on me as I was on them. This had served us well recently, but now we want bigger returns on our growth journey and this is the next step.

It is not meant to be sad, it is meant to be expansive. This is what can get us to our next level of success and enlightenment. We have filled out trivial pursuit pie hearts with our pieces to an overflow capacity. Yet, there are still empty spots waiting to be filled with the contributions of others. We can’t do that for one another.

Because of the love I was feeling from everyone, and the increasing amount of a-ha moments, I have to tell you that I felt very little pain from my infusion. Even yesterday I felt great. And, as a big surprise, I got another visit from my whole family. Unannounced, they showed up to check on me and we even went out for dinner. I can’t tell you the last time that happened. Instead of feeling put out, I really enjoyed it. I even let my father drive my car for the first time. Not because I wouldn’t let him drive it, but because in a round about way he asked to.

It gives me hope that new beginnings are starting. The hierarchy and false pretenses of the past may be finally falling away. Maybe this whole cancer journey was just a catalyst to make these important life changes, a huge moment to stop the crazy spinning of what we perceive life is (work, work, and little play) and focus on our truth, our love, and our path.

My First Infusion

So, Thursday finally came. I was scheduled to be at the cancer center at 7:45am. I hung out at Alex and Max’s house the night before. We had fun and did everything we could to keep my mind off things. When I left, I felt the momentum of the world pushing me to this appointment and just stopped resisting it.

Alex drove me to the cancer center. I had two bags, one with all my doctor paperwork and one with items to keep me busy. I signed up for some resources from the LIVESTRONG foundation, and one of their guidebooks gave suggestions on what to bring.

  • Sweater
  • Music player and headphones
  • Reading materials
  • Crossword puzzle or other activities
  • Lip balm
  • Water bottle
  • Body lotion
  • Peppermints
  • Calming teas
  • Notepad, journal, and pen
  • Bootie socks or slippers
  • Cookies, crackers, or other snacks
  • Stress ball
  • Something to cover the head

I got most of my supplies at the dollar store.

Upon entry, I had to get my blood drawn. I checked in with the receptionist. She said to me, “Good morning, Joann.” I was taken aback. That was my mother’s name. She has been dead for 12 years. She was probably last there 13 years ago. I corrected her and sat down. Alex pointed out that Rosanne was on the TV. It was an episode where Darlene was in the hospital after an appendix burst. Rosanne was all kinds of crazy, but you knew she was concerned and loving to her daughter. Alex was like, “I think we are in the twilight zone.”

When my mom was scheduled for her first chemo infusion, I actually went with her. I remember them hooking her up. She was so scared. I made her come with a stuffed animal. It was the last thing I did before returning to Chicago to end my FMLA leave. Maybe she was just letting me know that she was there for me too.

After the quick and painless blood draw, we saw my doctor. She is a wonderful woman. She made sure I didn’t have any questions, checked my incisions, and went over my CT scan results – which were good.

The last stop was the infusion room. Usually the cancer center is bustling with activity, but we seemed to be the first one in. We had our choice of where we wanted to sit. The patient got a nice recliner and the poor guest had to sit in a hard chair. My infusion was scheduled to last for 6 hours.

The care that these people put into your experience is exceptional. They put my arm on a pillow and warmed it up with a heating pad to get the blood vessels ready. A big IV stand hovered next to me. The nurse got me in one poke. The first medicines were anti-nausea, anti-anxiety, anti-histamine, and steroids to help prevent allergic reactions.

I sat as restfully as I could. I had swapped my shoes for comfy slippers. Alex was having some difficulty in the hard chair. He had some intestinal distress for the last few days, and he was feeling it again today. He had brought knitting needles to re-teach me how to knit, but the IV placement limited my hand moments. He went to the bathroom and spilled stuff on himself. You could tell he was getting uncomfortable and bored. Still, his spirit put me in a great mood.

Too often, these cancer centers feel like funeral homes. People aren’t really happy. They have cancer. I have walked in the building alone and have felt the weight of this dark energy before. It isolates, it terrorizes, and it can make uncomfortable situations feel worse than they need to be.

Walking in with one of my friends is the best way to counteract this. Alex and Max are always my first go to. They are my best friends, soul sisters. They know where I am at and what will trigger me into another thought pattern. I have noticed that our humor always puts the doctors and nurses in great moods as well. This can be a huge benefit.

My first chemo drug was Taxol. The whole infusion for that drug was 3 hours, but they were going to test it with 2 fifteen-minute batches. I was doing well with the first batch. I even got up and went to the bathroom. When I returned, I started to find it harder to breath. It felt like someone was starting to sit on my chest. I than began to feel pain in my hipbones. Not sharp, but achy. It made me want to get out of my chair to get pressure off of them.

I hit the nurse call button, and soon I had two next to me. They stopped the infusion, which immediately ended my symptoms. I had a reaction, but it was at the end of 15 minutes. They gave me more Benadryl and steroids, let me rest a half hour, and tried again.

I was pretty good. Alex traded out with my sister who brought me lunch.  This is a great plan. Having a back up switched things up and made my helpers feel less pent up. I tried to get a little sleep. The liquid Benadryl gave me restless legs. Apparently, I almost kicked my sister a few times. My legs didn’t hurt; I just could keep them still.

I completed the Taxol and finished off with 30 minutes of Carboplatin. This was the drug that was going to take my hair in 15 days. At some point, I saw my sister and asked her if she was cold. She had a sweatshirt on, and I was feeling warm. A nurse overheard and poked her head in. ”Which one of you are hot?” I said I was and I had two nurses around me again.

I got my blood pressure taken, pulse oxygen, temperature, and glucose measured. One nurse brought me cold wash clothes for my forehead and neck. Apparently, my blood sugar was high. They supposed that it was from the steroids. One of the side effects is overheating. They chose not to give me insulin because it wasn’t super high, but they kept watching me. No more cookies from the volunteer cart. J

At the end of the infusion, I got a little gift (a plastic cup) and the nurses joked around with me. They pulled out my IV and my sister and I took off. I was tired, but feeling halfway decent. She dropped me off at the boys’ house so someone could watch me.

I felt a little bit like a space cadet. I wasn’t super tired. I wasn’t nauseous. I didn’t taste anything metallic. Being tired has been the biggest thing, and even that hasn’t been too bad. I have to saw, I am surprised. I really thought it would be a lot worse. Of course, side effects can be accumulative. I am going to be hopeful and try to wrap my brain around it staying this easy for now. Worrying just wastes good time for nothing.

So, one out of 3 infusions are done for this session of chemo. I can do this!