Wednesday, July 27, 2011

Cancer: A Love Story

That's an odd title, none the less it is the title of my story. Through this journey I have learned to love myself, but that is not what I am writing about today. Today, the love that I am talking about is my love for my partner, Ken. Prior to my diagnosis I used to question our relationship...a lot! Could we make it? Would we make it? We argue and bicker so often. I make him crazy, then he makes me crazy. If it's not the finances, it's the way I put the dishes into the dishwasher. In thinking about it now, it sounds a awful lot like marriage. During my ordeal with cancer, those things revealed themselves to be petty. In fact I came to understand my doubts about our relationship were completely unfounded. Ken in short has been a rock.

While I was dealing with the physical aspects of the disease he was busy arming himself with education to ensure us both a long life. He has studied nutrition, psychology and God only knows what else about cancer to make sure that I am here and so is he. Early on, prior to my surgery, there was a day that I came to trust in us. I had always trusted God and myself. I knew that I would beat cancer, but this was the day that I knew I wouldn't have to do it alone. I've written about it before, so I apologise if I am repeating myself. I was at UCLA Medical Center oncology division of the dental center. I was told that I needed to have four teeth removed to protect me in the future. Being rather vain, that is the last thing I wanted. I even remember writing on Facebook that I pity the fool that wants to pull my teeth. At listing to the reasoning Ken pleaded with me to listen to the dentist and have the procedure done. At first I was shocked and felt betrayed. How could he act like this when he knew how important it was to me to keep my teeth? I listened as he broke it all down into bitchy cliff notes. "If you don't", he said, "and your teeth become infected, they can't pull them because you won't have sufficient blood supply in your jaw. Then infection sets in and the only thing left to do will be remove it and replace it using a bone from your leg! Is that what you want"? It felt like I was 5 and being yelled at. I caved. I gave in to logic. I got mad and blurted out "Fine, pull them". I was told that I may have to come back. I informed the dentist that if he wanted the teeth, he would need to do it now, I wouldn't be coming back! And that is what happened. I walked into the lobby, my jaw still numb from the procedure, holding bloody gauze in my mouth to see Ken slumped in the corner of the lobby with his head down. When I approached him, he raised his head and I saw the tears for the first time since I had been diagnosed. "Thank you for doing all of this to stay with me" The words were simple and quite. But they were powerful!
I understood in an instant that he had believed in us all along. He yelled about the way I put dishes into the dishwasher because he wanted us to have clean dishes. He wanted there to be an us and some of my beliefs in self healing were terrifying to him in terms of our future. Maybe I could heal myself, but he wanted to make sure I was healed what ever it took! For us. Because he saw a future for us. So bring on the chemo and radiation. Get the cancer out of my body! I became far more compliant that day, and in his own way so did he. To this day he is receiving acupuncture for his insomnia and I'm happy to say it is working. We are both learning how it give in to each others beliefs.

While my cancer was being removed, there was another battle occurring in our state. The battle for same sex marriage. I never really planned on being married. I did feel that if someone wanted it they should have the legal right, to it, however. But now, I am bothered by the ruling, not because I want to be married so badly, but when I look at Ken, I see this amazing man, who has not been just a great mate, but a care taker. If there was ever someone in this world who deserved a marriage proposal it is him. And yes, we could move to a state that has made it legal, but is that really the point? And yes, we are Registered Domestic Partners but it's not the same. We have a certificate from the state that sounds like we have gone into a housekeeping business together. He has been a model husband and even if he turns me down, I want him to have the right of me asking for his legal hand in marriage. I have never been much of an activist, but surviving cancer certainly changes things. One thing is certain to me, no matter what the law says love will endure.

Thursday, July 21, 2011

The Quiet

I love the quiet, especially of the early morning. It is said that early morning is the best time to meditate and I believe it, everything feels so gentle, so calm. Walking along the morning dew clings to your skin like a kiss that holds the promise for a sacred day. It's amazing how the world feels before everyone wakes up. Living in California, I can never take this time for granted. The noise will begin as the first neighbors wake up around 5:30 and begin their day, cars start to roll and just in the distance the freeway comes alive. But now before the dawn it's like being at home when the electricity goes out and you suddenly realize how much noise the refrigerator makes.

I love quiet places. This brought about my love for New Orleans. By reputation you would expect there to be twenty four hour noise, but get just a few blocks away from the tourists and the quite of the neighborhoods engulf you. I have never figured out if the acoustics of the city were brought about by the architecture or the heavy moisture in the air or what, but for me it is one of my quite places. When there I love walking along the banks of the Mississippi River. I've always said that my body lives in California, but my soul lives there. But in really thinking about it I tend to thrive in any quite place and yet I love living in a city. I don't know what that says about me.

I love driving in the quiet. I remember sneaking out as a teenager and riding my motorcycle around the quiet city. Today, I drive with my radio and music off when I am alone. Just listening to the sound of my tires on the road, humming a quite song.

The quiet seems to intensify our connection to the divine. My life feels like a prayer in the early morning. Each action is a communication with God, that isn't the same later in the day even if the actions are exactly the same. Even doing on the dishes takes on a different spirit before the sun comes up. And the way that we are gentle with ourselves in the morning is sublime. Speaking in a whisper to the dogs even if no one else is at home. I worked for Starbucks Coffee Company as a manager for years and always felt lucky to open my store. I hated it when corporate mandates insisted that managers only work 9-5 slots. I fell out of the habit of waking up at 3:30 am and I have to say that I have missed it. Of course there is more than me in my house to take into consideration when it comes to being up at this hour so I will cherish my alone time this morning, knowing that it rarely happens around here.

Wednesday, July 20, 2011

Hello Old Friend!

Last night I was visited in my dreams by a familiar young man, it wasn't until I awoke around seven am and curled up to the dogs going over the dream in my head that I realized who he was. It was me around 14. It took awhile to realize that the sad eyes and skin made red by acne were mine, but there he was in my dream begging to be noticed. I suspect it was even more than that. You see that little guy went through alot.  He moved in with his dad and new step mother to find his world turned upside down. His fathers new wife smelled the weakness and effeminate behavior and turned her sights into if not straighting him out, at least making him appear to fit in. And fit in in Texas no less. This was a far cry from fitting in California, where it seemed easy to disappear. The spotlight of a new school and being the new kid had the same intensity as the Texas sun.

He had received lessons in how to walk, was forbidden to join choir or drama class and shoved into a pair of Wranglers for his first day of school, where no matter what he did he did not fit in but who cared because he did not fit in at home either. That little guy just dug deeper and deeper into his books, looking for a way out. I admire him because other teens may have considered another more permanent way out. He assumed that one day all of this would end. He faced verbal and mental abuse by his step mother and his father said nothing. She spied on him and finally forced him out of the closet. His father said nothing. This little guy had so many hopes and dreams for his life, this was surly a mistake, but it went on until he was abandoned by his father in a rent by the week apartment. In fairness to his dad (who is also mine), the original plan was that they were to move out together, but his father ended up trying to reconcile with his wife one last time and he apparently did not fit into that plan. He struggled with working and school, where he was failing miserably, and finally gave up. He called his mom and within 24 hours was on a plane headed for home.

Still no direction and no great ideas, he launched a plan. To become someone else entirely. Fueled by the anger at his father he decided much like any actor would to take on a new name. A stage name of sorts, but this was for a grander stage. The worlds stage. That is where this plucky little guy surrendered his life and mine began. I entered the Navy using my new name (which then became legal) and vowed never to look back. I didn't for quite awhile. Two years into my stint, I was reconciled with my father thanks to my new step mother, Doris. Still I tended not to look back. I had forgiven my dad and hoped that he had forgiven me (hey I was far from perfect). I then began the process of stumbling through this life. Oddly enough, and with much help of many of the amazing people who entered my life, I came to like myself. Then I came to love myself. I came to understand my spiritual side. I also forgot about loving myself and forgot about my spiritual side at some point.

Thanks to cancer I was reacquainted with both. Maybe the dream was brought on by the fact that friends from my past have been popping up lately. My old boss, Donn, My old assistant Lupita and most importantly to me my dear friend Blake.  And while I haven't actually seen or spoken to any of them just having them in my on line life is a comfort and a bit hope for me. But back to my younger self. Somehow I came to love myself, but never did love him. Perhaps he believed that he didn't deserve it. That maybe he wasn't lovable. What I was left with upon waking up this morning is that he is here and very much alive within me. He is also lonely and broken and in need of love. Some 30 years after his giving up his life for mine I finally am realizing that that is just not the way it works. His wounds are my wounds and in spite of the fact that I have come to love myself, I am realizing that I have not come to love all of myself. I suppose that some of this will start off with some forgiveness. In many ways he gave me a clean slate for the future and I have to look at what I have done with it and take responsibility for it, both the good and the bad. And most importantly I need to be grateful that this little guy was so remarkably strong. In spite of the sadness and wounds there was still a smile behind his eyes that carried on into my life. I also need to merge both lives and realize that what I am today is because of him. It strikes me as ironic that I was never confronted by him until after I faced cancer and learned that I was strong enough to face anything. Maybe the lesson here is that I am as strong as he is and always was.

Tuesday, July 19, 2011

Never Forget

While discussing diet, I am frequently reminded by my partner Ken that statistically I am at a greater risk of repeat cancer and need to eat correctly. I hate statistics and sometimes I just want a donut. But like it or not I am tasked with never forgetting my personal past with cancer. Every day I continue to feel better. I am exercising more and feel strong enough to return to work, and yet I am warned by my doctor that I am still anemic from the radiation and should just let things progress in their own time. I listen to him and in the back of my mind think, I'm gonna do what I want to anyway. Of course Ken was at that appointment and ALWAYS has something to say about it. So I am not returning to work. I am trying to stay busy at home.

Did I ever mention that I hate housework? Well I do. It wasn't until I was at my dad's spotless house that my own home even felt dirty. OK in the grand scheme of things I wouldn't qualify for some reality show on dirty homes, but after seeing near perfection, I have to admit that I was a little jealous. So now I vacuum more, scrub the bathroom more and appreciate my clean home more. I also see more and more dust and dust bunnies under things that I would have never noticed before. It's like my mind is taking out all of it's frustration with my situation on the house. Loose cords bother me, spider webs bother me and suddenly there is just not enough hours in the day to tackle it all. The bottom line here is that I need to go back to work or I might crack up and become OCD, that or open my own maid service.

Maybe I just need to find a distraction, yet I am reminded not to get too distracted. Don't forget to eat correctly and take my vitamins. In some ways it is like being 14 all over again (except for the cleaning). I feel like it is time to move forward but am being held back by the tether that is or rather was my cancer. And no I don't want a repeat performance, but it would be nice to feel like I could kick up my heals now and again. I guess the bottom line is this: everything in moderation. That seems to work in every situation and hopefully it will work in mine. Now while Ken is not home I have a some rugs to vacuum and a donut with my name on it to eat.

Friday, July 15, 2011

Another Week

When you think about it it is amazing what can happen in one week. I am very conscience of this right now because the weeks seem to be passing by so quickly and soon I will be back at work. If you really think about it though, think about what one week can bring. A vacation perhaps, a renewed friendship? A new career? A new look on life? A new appreciation of the love in your life? A much needed break? New books? A stronger connection with God?

The weeks that have gone by have brought me all of that and more. I appreciate time in a much different way than I did before being diagnosed with cancer. It used to feel like it was my enemy. Rushing faster and faster until it was going to be too late for me. I was feeling the sand slip through my fingertips unable to do anything about it but try and keep up with the life that I was living. Once diagnosed the entire glass bottle of sand fell from my hand and I had to face the reality that that life was nothing more than an illusion. Being in the world but not of it, never made sense to me until recently. I didn't understand what had happened until I was not of this world.

I used to dream of being a comedian. I thought I was pretty funny. In reality I was wounded and bitter and made jokes based on that. Today, I feel love and compassion, and while I think I have retained my sense of humor, I no longer need to make jokes at any ones expense especially mine. Ironically I laugh more today. I see more joy in the world than I used to. I smile more. I say hi to more people than I used to. In spite of my new speech impediment (which I am working on in therapy) I am not bothered to speak with anyone. Not that all my my mean streak is gone. I have to admit that things like the you tube video of the woman falling into a pond because she is on her cell phone really cracks me up. I think the difference is now I feel that I am laughing with her. I could see myself doing that (and probably will at some point if I don't learn to stay off my smart phone.  I just hope someone it catches on video so others can share in the laugh).

In another week there are hundreds of opportunities for us all to become more connected. To say hi to strangers. To try and make someones day, now just wait around for someone to do something nice for us. This coming week I can do nice things for myself as well as others. This week I can make myself available to someone who is going through a difficult time. Time is a gift. Each week brings new opportunities. Each week brings more love.

Wednesday, July 13, 2011

Support

Every Tuesday night, I get in my truck and drive some 20 miles up Pacific Coast Highway to attend my support group. Unlike other trips of the same distance that I may make, I never think about wasting gas, or the time involved getting there. This trip is a highlight of my week. The admission to the group was quite high. Over two hundred thousand in medical bills (thank God I'm insured), the removal of part of my tongue, scars that may never look "normal" and a speech impediment. To spend time with this amazing group I would say that the price is fair. You may be thinking that I'm nuts, but here me out.

We can all use some support. Frankly, I'm surprised that support groups aren't the norm rather than for special cases. Think back to grade school and how much more pleasant it might have been to spend a couple hours a week with other kids who were having the same or similar experiences to yours. Just imagine coming  to understand that the bullies were insecure as a child and maybe being able to show some compassion for them instead of fear? All of the beautiful girls that no matter what seem to think their fat learning that they are perfect just the way they are? Redheads standing up and claiming their own special kind of beauty. All of the kids with learning disabilities coming to see themselves as smart and capable, not unteachable. The list goes on and on. I bet that I could have created a special group for just about every five years of my life. And if we did this where would we be as a society?

In some ways churches used to be a kind of a support. During the 50's and 60's, you were looked down upon if you didn't go to church. Then as time wears on going to church fell out of vogue. I will freely admit there was a period of my life that I spent quite isolated from Christians. In fact if I would have been in a support group at that time, it would have been a God please protect me from your followers group. I'm still leery of some sects. Now my group would be more of a God please keep the baptists and their hateful teachings away from me and my family. While visiting my Dad I went to church with him and even though it was my first experience in a Presbyterian Church, I quite enjoyed it. His minister, Dr. Charles Somervill, was fun and up beat. Nothing of what I equate ministers in the south to be (Still have some prejudices). But the thing that really impressed me was the Prayer of Confession that starts off "Our God, we confess to knowing more about how you would have us be than actually being that way." In short it is a confession to being human and fallible. That is something that I can live with. We are all just human after all. I have vowed to check out our local Presbyterian Church here. Usually I am at my most comfortable in a Catholic Church, even if I am not nor will ever be Catholic. In fact I still tend more towards the metaphysical, Earnest  Holmes type of teachings, but all paths to lead to God.

But to get back to my current support group, there is just something about surviving a life threatening illness and being able to weekly tale about the tale. When our families and friends grow weary of us having cancer or health problems related to the treatment of cancer, we find ourselves with a most welcome outlet. We celebrate to good and help each other through the bad. We all learn something new each week, but most of all, speaking for myself, I have increased the number of people in my life that I can truly say that I love. Here I find myself surrounded by wisdom that came a too high of price for any one individual but it is shared freely. We also share laughter, tears, compassion, empathy, humanity and occasionally some really amazing cake! (Thanks "C" and thanks to Laura for telling me about the Cancer Support Community).

Tuesday, July 12, 2011

Home is Where the Heart is.

My trip to Texas happen too quickly. It seemed that for months it was all I could think about. Then the two weeks leading up to the actual trip I started to dread going. Leaving my dogs, leaving Ken....facing what Doris had been telling me about my dad's decline. It all seemed too much. Then before I knew it I was comfortably seated on Jet Blue flight direct to Austin with my Kindle in hand. Not to sound like a commercial here but for those of you who fly but have not flown Jet Blue, let me say this: Do it! Jet Blue's domestic flights rock. Great service, great prices and more than enough leg room. If you're taller than say 5'10" you can purchase roomier seats for only $45.00 which also come with the privilege of first boarding! 

Once in Texas I realized I had really over packed for the 5 day trip. My excuse is that I am used to packing for two. The reality is that I am sadly out of practice. One thing I am glad I took was my bathing suit. I knew my dad doesn't have a pool (which in my opinion is a must have for Texas) but Granbury has a beach. Not a real beach per say, but the city paid God only knows what to bring in tons of sand to create a "beach" on the lake. My step sister Dorenda and I spent one of the days there and it was a little slice of heaven. First it was great getting to know Dorenda, who in spite of our similarities, I have managed to not spend any time with in the 25 years my Dad has been married to Doris. That is my mistake, as it turns out she is a wonderful person and was a great hostess! (and such a cowgirl and god knows I love me some cowgirls!). Just spending the day talking and taking dips in the cool lake to cool ourselves down from the 103 degrees, was one of the best days I've had in ages. It's pretty cool to have another sister. It still surprises me, for years I have avoided anything to do with family, mine or anyone else's. I can't say if it is age or the cancer, but the feeling of belonging is comfort. I really discovered that first with my In-Laws, Steve and Ruthie. No matter how uncomfortable it was they were troopers coming by the hospital everyday to check on my progress. Some how it finally dawned on me that I wasn't just their son's partner, I was family. (That happened in spite of the fact that to date, California does not recognize or allow same sex marriages).

Now I find myself thinking of Dorenda as my sister. In the end, humans have an amazing capacity for love. Our hearts can stretch to embrace and unlimited number of people if we just make ourselves available. I spent the better part of 40 years to afraid to reach out or open my heart. Now it feels like it is the only thing to do, the only way to be. I think about all of the people who prayed for me during my journey with cancer and wonder if those prayers somehow unlocked my heart and mind. While in Granbury one of the best experiences I had was thanking my parents congregation for their prayers and got to announce that I was at last cancer free. The tears still fall when I think of standing there feeling nothing but gratitude. It feels amazing to be part of peoples lives that I had never met. They were willing to take time out of their busy days and say a prayer for me. . They of course love my Dad and Doris and want to make sure that they are comforted, but to go beyond that and see the selflessness in their simple act of including strangers in their day, requires a selflessness that I have yet to achieve. One thing you can say about cancer is it sure can bring people together. Yeah it sucks and I pray for the cure, but I have to be really honest and say this has been an amazing journey.

My short time in Texas came to an all to quick and and it was time to jet back home. Back to my life with Ken and our dogs, rabbit and fish. Back to the daily chores and the concentration of writing and working to improve my overall health. Yes I am cancer free but thanks to the treatments that got me there, still not as full of energy as I would like to be. Saying coming home feels somewhat odd to me, though. Long Beach has never felt like home, and yet here I find home in the company of Ken and our family. I still find Texas to feel like home. I know that I inherited my mothers nomadic spirit and long to roam, but as I really think about it Home for me is found in some pretty unlikely places. It is not a geographic location. It is where the people I love are. It is my support groups, my writing class, it is found online with friends made years ago or new acquaintances. Most of all it is with my family and especially with Ken. My heart lives everywhere I love. That is the lesson for me in all of this: just to keep my heart open.

Monday, July 11, 2011

A Visit to my Dad

It's already been a week since my flight back from Texas touched down here in California and yet my thoughts have been so jumbled I haven't been able to write about the experience. I guess to sum it up I would say that it was liberating. Early on I convinced my Dad to stay home and that I would fly out to see him after the radiation. I made the good point that it would be more frustrating for all of us. There wasn't anything he could really do, and I was concerned that Ken would then have to look after me and my Dad. That was pretty top of the mind stuff, but I've been digging around in my head and finally had to admit that I didn't want my dad to see me like that (post operation). In truth I didn't want anyone to see me like that. But after it was over there was Ken and Theresa and my amazing In-laws, Steve and Ruthie and most surprisingly my amazing buddy Daniel (who I nick-named Scooter years ago). In some ways I feel guilty for telling my Dad not to come. I wonder if I stole an opportunity from him to be a Dad. If I had it to do again, would  I ask  him to come?  If I had it to do again I would admit that no matter how tough I acted I was scared beyond belief? The dominant voice in my head always told me that I was going to survive, but it might have been nice to have some hands to hold when the other voices where trying to chip away at me. Of course I made it through it, but today it feels like it might have been nice to let go of all of the trying to be a man crap and just have my Daddy's shoulder to cry on.

It all comes down to this: Men all want to make their fathers proud. So we go on with our lives and only try to reveal the good stuff to dad. At least that is my truth. I avoid calling him if I feel off or down. I have never turned to him for advice on deep or difficult things so that he is left with the general impression that I am tough. Truth be told I am tough. I am that way because I have made myself that way. Not wanting to show weakness or fear is my most common way of being. I charged right at the cancer and dared it to try and win. I told it from day one that I was going to be the victor in this story. I allowed my body to be carved and changed, shot up with dangerous drugs and shot full of radiation to prove my point. I only cried a couple of times and those were very private moments between Ken and I. Most of all I never confessed my fear. Never confronted it. Just told it to go away, that I had this all under control.

The trip to Texas changed me. I learned a truth that I should have known all of my life. My Dad is proud of me. In spite of all the stupid things Ive done in my life the man I have always looked up to is proud. I learned a valuable lesson of unconditional love. My father loves me. Broken or whole, rich or poor, single or partnered he loves me. I don't have to try anything or show anything, I just have to be myself. Somehow, and I never saw this before just being his son is enough. I've started calling him a lot more ofter already. I am no longer armed with the excuse of long distance charges, so why not speak as often as we like?

This trip had been a long time coming. Too long. My Step Mom (known affectionately as Momma D) had kept me up on my dad for the past several years. In fact her descriptions of how he was declining made me afraid of going home. I didn't want to see him stuck in a recliner, an old man, a future reflection of my self. In reality my Dad is getting older. I know that he turns 80 this year. But the man that I saw in Texas was not the man that I was afraid of. He still takes his bike out for morning rides and manages to make it thru the day. He even still works as a bus driver during school season. He is also smart as always. cleverr, kind and has a surprisingly open mind. In short this old dog still has some new tricks in him.

As adult children we look to our patents to see our futures. We do this without taking into consideration that we live in a much different world than they did. We judge ourselves harshly based on their successes and tell ourselves that we will never repeat their failures. I believe our fear of aging comes from what we see in our parents coupled with our own judgements. I look to my Dad now and see that 80 still seems pretty young. I am nowhere close to where I should be financially and the thought of retirement scares the crap out of me, so seeing that I still have time to get it together is a big relief. It doesn't give me any wiggle room, but at least I am not terrified.

I think that the biggest lesson that I learned while in Texas was that I want to be much closer to my Dad. There is a side of me that would like to move back there. My Dad won't live forever and the older that I get the faster the years seem to pass. ,  of course,  have Ken to consider in this and his roots are deep where we are. It could be that the desire to move (other than the fact that I have never felt that Long Beach was my home) is just the desire to be closer not physically but honestly. To share my fears with him and let him see me as a human. To call even when I am having a crappy day. To share my failures not just my successes. To finally be his son, not just what I thought he wanted as a son (Note to self: get real, you blew that years ago by coming out and God only knows what else).

Unlike a lot of cancer patients that I meet, my fear is not of the disease, not of having my life cut short. In truth I fully expect to survive this. My fear is to fail at being the man that I was meant to be. Of reaching my goals and dreams. Of fulfilling promises that I have made along the way, especially to Ken. Dying of cancer would be easy. Living to my fullest potential of terrifying! Thanks to my Dad, I have a pretty good coach though.