Tadaa ith the firsht dai...

Every morning I remind myself that today is the first day of the rest of my life. I can choose to live it well or choose to live in pain and sorrow. Being conscience and choosing my day has been a great way for me to stay in the here and now. Today with swollen tongue I read my line "Tadaa ith the firsht dai..." and couldn't help laugh at myself. I could have pronounced the words somewhat clearer but talking in general hurts right now. I think that overall this is a good thing. I need more practice on listening anyway.

I stated early on in my blog that I had spent my entire life talking and not listening to others. This included parents, friends, associates and most of all my partner, Ken. I have been "punished" several times by him with the silent treatment when I cut him off mid sentence. I really do need to learn to listen if for no other reason to have peace in my house hold. I get mad at myself every time, I ask a question and the answer comes back in this form: "like I told you last week...." Most normal people would be worried by early onset of Alzheimer's but I know that I didn't forget, I wasn't listening in the first place. I vowed to learn this lesson when I went into surgery, but still find myself hearing "like I told...." AHHHHH! It's either learn it now or end up becoming a monk and taking a vow of silence. (For those of you who don't know me, that is really a funny thought. My sisters haven't spoken to each other for years, but I am willing to bet that if I did take a vow of silence they would give up their silence with each other just long enough to place bets on how long it would take for my head to explode. If they were really smart, they could promote it as a pay per view event).

I believe that our thoughts create. That is my first rule in surviving cancer. When I look at the tapestry that is my life spread out before me I can see clearly where the stitches became knotted and tangled. I think that most of the survivors that I know could. The thing is that can we do it far enough in advance to prevent illness? There are plenty of warnings in our life to let us know if we are on track or not. The first is simple: Am I happy? The answer is yes or no. It is not a fraction. It is not well, I would be happy if...that just means that you are not happy. The next is simple also: Why am I happy? The answer should be simple and not involve anyone else. If I answered I am happy because Ken is so wonderful, then I have created a situation where if Ken where in a bad mood, got sick or left me, my life would suck! And while it is true, I hate it when he's sick. (mainly because Ken is so self sufficient when he is ill that there is nothing for me to do, so my need to feel needed goes into overdrive.) In truth if I would just leave him alone and go and clean something or do some of his bigger chores like raking or mowing he would appreciate it and I would be too tired to really care if he needs me or not. The point is that there are little lessons to be learned everywhere. This isn't a race. It's not like some crazy version of the Rapture where if you learn every lesson, you get picked to go to heaven. And for the record I don't believe in the Rapture but secretly hope that if I am wrong, that God will take all of the members of the First Baptist Church of Long Beach first. I am so tired of having that judgemental group come to my house and try to convince me that god is to be feared! God, in case you are listening,  is LOVE! And of that I am certain! I can't look anywhere without seeing beauty and creation and love. It is all around us everyday, everywhere. It was there before my cancer and has been there all through the process. So now that my tongue is swollen and I am at a new stage of the process I can still stand and look in the mirror and say: "Tadaa ish the fisht dai of the resht of my leift"! Hey, I know what I mean!

Somethings missing

It would be too easy for any cancer patent to sit and look in the mirror and begin to feel sorry for themselves. We are, after all, not the people that we once were. Things have been removed and rearranged. We see scars where once there was unblemished skin. Then it is up to us on how we deal with it. Do you wear a wig to cover hair loss or is a scarf enough? Do you have reconstruction? There is so much going on and decisions have to be made. I, for one, am glad that my surgery immediately covered the reconstruction issue. I say that because I am not particularly enamored with the "donor tongue" right  now. Still swollen from the surgery, it impedes my progress on speaking correctly. I say correctly, because almost everyone can understand me, but I would like to sound the same as I did before surgery.

Donor tongue also is suffering from blisters thanks to the radiation. In the long run, I am told that this is a good thing the more distraction during radiation the smaller it will be afterwards and everything in my mouth will be as it should. Perhaps the downward spiral of my mood is being caused by not being able to eat even as I was a few days ago. I remind myself to count my blessings. I have no other side effects from radiation. I am not fatigued or nauseous. My appatite  isn't diminishing, in fact it seems to be increasing. In large part I can't eat as easily or quickly as I was and I can't eat the varieties of food that I was. The other side effect that hasn't occurred is a loss of taste. The remaining half of my taste buds seem to be working just fine! In all of this I am sure that there is a silver lining. I can start trying new foods that I am not accustomed to eating. That could be fun. Also, I have started the groundwork for our garden, so by the time we get in our first harvest, I will be long past this stage. But back to the original topic:

While the majority of cancer patients can hide there scars I frequently wonder if we should. Are the wigs to make the patient or society more comfortable? Recently I was accused of being drunk because of my voice. I for some reason, felt obligated to explain that I had half of my tongue removed due to cancer. I knew the voice would be problematic in the long run. I can't imagine being on the sales floor at work at this point. But Then I wonder, who am I trying to protect? Are the customers so important to me that I feel obligated to fit in? If you ever heard me venting about them after a long day at work you would answer NO! So what is it then? The survivors I know are extraordinary people. Shouldn't the extraordinary among us have the freedom to show there scars? Lately I have been wearing a v neck shirt in spite of the fact that my trech scar is not yet the little line that I am ensured that it will eventually be. No one really seems to notice. Should I take care and cover it to protect those that may be offended? What exactly are they offended by anyway? Are we so shallow a society that we would ostracize people with scars? Before you answer that take a moment and think about what you would have done at each stage of your life. Would the high school you let a guy into the group with a big scar on his arm or neck? How about single 20 something you? Much cooler and more successful 30 you? 40 you? 50 you? One thing I have to admit is that the older I have gotten the less I cared about what others looked or dressed like, but the more I cared about what I looked like. I was planning on being a 50 year old sex pot!

I see very clearly that I am going to be a 50 year old survivor. Changed in so many ways. More healthy and vibrant than my previous self. Wiser? God I hope so, because in spite of something missing from my body, I know that it is now my roll to help others through  this process. So if I show my scars when I am out and about, some one might be offended or even repulsed. If given the chance I can tell them about the scars and show them that they are not to be feared. That person may end up with cancer or know someone who will have cancer in the future.  It is up to me to help people understand that cancer does not have to be a death sentence. In fact, for so many of us it has been the very thing that called us back to life!

In our garden

There is a phrase, I have been longing to say lately. "In our garden we are growing..." There is no real reason that we don't have a garden yet. I could blame Ken for being lazy, he could blame me for getting cancer and taking up all of his time. The list of blame is endless, but the reality is the growing season is relatively short! It is said not to "should" on yourself, but I feel that I should be outside weeding and making ready the spot. We did get that far and actually farther than that. We worked and weeded and hoed the future spot into submission (and when I say "we" I mean Ken. I served Iced tea, I was some help. Can't have my man drop dead of dehydration on top of where our tomato's will be). This unfortunately was a several  months back. Actually prior to my being diagnosed with cancer and prior to rain becoming and issue in sunny Southern California.

I can throw out 100's of excuses but the reality is that I am daily shamed by my in-laws. Steve and Ruthie have planted for this year. Tomatoes are growing. They have given us lettuce and I drive in to our yard daily to see "the strip of nothing". When did I get so afraid of a little rain? I should be weeding right now! I tell myself that all day long until it is time to leave for radiation and therefore too late. This past weekend I read "The Bucolic Plague" by Josh Kelmer-Purcel. It is a great motivator for anyone wanting to have a garden. Of course right now it is a source of my shame. I should (there is that word again) be working the land. I want the perfect tomato! I want a salad that doesn't taste like cardboard, but springs to life in your mouth. Even the vegetables purchased from the organic farmers market don't taste as good as the ones I remember from my childhood. My parents always had a garden. I never got too involved in it and as an adult I regret that now. I also really regret killing my Dad's entire garden one year while he was on vacation and I was supposed to be watering it daily. He came home to a mud pit with sun fried vegetables. "What? I watered!" I screamed back at him. Of course he was smart enough to know that I had not watered daily and waited until the last day to soak the hell out of the dead space. I think I saw a tear in his eye as he bit a farewell to his okra.

Now I want to grow my own food and I am too embarrassed to ask my Dad or in Laws for advice. I think that is a big part of the reason that the strip is still the strip and not the garden. We read Sunset magazine and Martha Stewart Living, but what we both really need is someone to roll the magazines up, smack us both in the head and force us outside. If we don't we'll never have the perfect tomato, or home grown kale, or watercress (what ever the hell that is. Ken keeps telling me I need to eat it). If  we don't master that art of the garden we will never get our chickens and we will never experience the liquid gold that I so jealously read about in the Bucolic Plague. My new friend Csaba apparently has an amazing garden at his New Orleans home (and yes I am jealous of both the garden and the New Orleans part). He has sent me all sorts of inspirational messages to get up and get planting. OK, enough already! I want a good tomato! Today Ken will get the surprise of his life. When he gets home he will find the strip, weeded and hoed! I will be victorious! I will be the type of guy that buys dirt! And I will blog about it!

What would you give up?

To live cancer free for a lifetime what would you give up? Ever think about this? I never really gave it any serious thought until it was too late. Yesterday we ate lunch in a restaurant we have been to 100's of times. There is a sign by the exit to the patio which reads;
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Warning: Consuming Alcoholic Beverages, Including Beer, Wine, and Coolers Can Cause Cancer. It Can Also Lead To Low Birth Weight in Pregnant Women.

I had seen the sign too many times because it is close to "our" table. I never noticed what it actually said until yesterday. I only saw the part about low birth weights when glanced at it in the pass. Now might be a good time to mention that we were at one of our favorite Mexican restaurants because I have been eating an alkaline diet for quit some time that also involves eating raw foods and juicing. I wanted a Taco! My friend and fellow survivor, Laura, has always talked about moderation to me, which makes a great deal of sense. I shouldn't get to the point where I WANT SOMETHING. I should just live in moderation. I can tolerate several green drinks a week in fact their really...Well...Good is not the word...Satisfying?...Well they are something, but the point is I can tolerate them. I know they are good for me and that I am doing something good for my body! I have been doing QiGong as well which is a Chinese form of meditation that adds movement (perfect for someone with ADD). I can love my body this way as well. The point that I guess I am trying to make is that giving up too much and becoming frustrated isn't the answer. Laura also mentioned people that she had known that had eaten a perfect diet, ran, exercised and then when there cancer came back became angry and gave up. I think that this proves that happiness is part of living well! I know that if I had to start running I'd be bitter. I hate running! I also don't like the gym. I love walking and hiking so I love myself enough to do it daily. That's good enough for me right now.

One of the things that made me think of today's topic is that I recently gave up sugar for Lent. So many people told me, "That's impossible! You'll see! There is sugar in everything!" What were these people eating? There is not sugar in EVERYTHING, unless by everything you mean processed food, which I rarely if ever eat, anyway.I know that bread ant tortillas and bacon had sugar in them when I gave up sugar. I was prepared for that. I have been reading every single label of my usual food purchases and have found no added sugar in anything but the tomato paste I used to buy and quickly switched to one with no sugar. Giving up sugar has not been hard at all. I allow myself to have agave nectar if I want something sweetened like some tea, but not usually. One thing I did try was sugar free ice cream. REALLY? They have to be kidding me. This had the texture of pasty dough. And it was so sweet I couldn't  eat it. I felt bad for the pecans that were wasted in the making of it. And so I don't need it. I would rather wait until the end of radiation and have a small bowl of real ice cream and then every month or so treat myself.

Living in moderation somehow feels right. I may have given up a lot over the past few months but it doesn't really feel like it. The biggest change is that I have replaced a lot of shopping with writing. I hope to in several months time to have much less clothing to donate and a book to show for it. So back to the original question. It is a valid one and one I continue to ask myself daily. What can I live without? Living simply seems to be, at least for me, the right answer. My house will never look sparse like a mid century home. That is simply not me. When I am asking myself what I can do without, Art has never come up as something that I can do without or want to do without. I will seek my moderation elsewhere.

3 hours

They say that women forget the pain of childbirth, which is the only thing that enables them to have another child. The ability to forget pain must be in all of us though. We fall down and go on walking, although maybe a little more cautious of the potholes. We get hurt by a lover, yet dare to love again. I was reading over early segments of my own blog and completely was shocked by my surgery. It is only a foggy memory to me now. The ability to forget pain is a gift. Life brings many gifts to us if we are prepared to accept them as gifts. One of the gifts of cancer is the "membership". You can read every book on the subject, you can have relatives or friends going through cancer but until you are a card carrying member you will never see or hear what we do. The sad thing to me is that most people will never hear how life affirming the experience really is. When we get together, hair comes down, Wigs come off (literally) and there is almost no subject that is taboo. As a gay man, I can honestly say that I now know more about breasts and what can happen to them than just about any straight man on the planet. I have absolutely no idea what I will do with that information, though, unless Trivial Pursuit comes out with the "Boobs" edition. If that ever happens, trust me you don't want to play against me, because you are going down!

One of the interesting things that I have noticed is that women never ask men about their cancer in fear that it is prostrate cancer. Apparently no man wants to talk about this. On my shuttle (I take a shuttle locally to WEHO for my daily radiation treatment) the men either make jokes about traffic or sit quietly while the women talk about blisters on their boobs caused by the radiation and what the best types of aloe vera jells are to relieve them. The women also talk about life. Theirs, their kids, grand kids, celebrities. I was accepted by the girls on the bus because it was rather obvious that my cancer was not in my man parts. My  tongue is still swollen and I have a visible scar on my neck from the surgery which I guess made me fair game. They seemed relieved to be able to ask a man, so what kind of cancer do you have?  I was glad though. I feel sorry for the quit guys on the back of the bus when clearly the gaggle of gals (and 1 gay) are having all of the fun up front. I suppose I shouldn't be surprised by men being quit about their cancer. The majority of men choose not to open up much anyway. For me though, I feel like they are missing a rare opportunity.

3 hours. That is what it takes to make the round trip from my local Kaiser to the one in West Hollywood. For 3 hours a day you can say anything. It is a gift. I think that if all of the people of the world set aside even 1 hour a day where no subject was taboo and you could talk about yourself and others with a group, we would all be much healthier. I've seen it work in the form of 12 step programs and Weight Watchers. Why not just have global group therapy. We all have fears and insecurities. Why pay a therapist for years when in a few weeks we could lay it all out on the table? You might not get answers, but somehow just being free to admit that you are afraid out loud can be enough to get your own spiritual connections working and you can answer your own questions therefore fixing your own life. (just like in therapy). I have seen it so many times in my friends eyes who are survivors. There is a little extra light that makes you wonder what they know or what they are up to. In such a short time I have come to understand that light. It come when you are no longer afraid to live. So many have seen what could have been their demise and choose another path. I think that the light has been put there to help guide others along the way.

Thinking about the people in my life who are survivors (and were survivors before I had ever met many of them). I now understand the attraction I initially felt for them. It is said that each level seeks its own. Life may have many levels but the joy of living seems to be truly understood by so few. Of course in this country where we tend to discard our elderly who can blame them? I still remember my Great Grandmother Kelly though, she lived to be 102. She seemed to know the secret. She lived her life and then one morning went to take a nap after breakfast and left this world. I have always believed that her death was on her terms. Now it is true that we  have no children and most likely won't have much family around to take care of Ken and I in our old age, but it is also true, that we have years to talk about it and discuss our fears and come up with a solution.

A Loss of Any Size

Loosing a loved one is hard. That fragile connection is somehow gone and you are left to go on without that physical. We cling to our memories to sustain us and eventually those memories turn happy. We never truly get over loss but at some point it becomes part of us and is comfortable. This is true whether it is the loss of a person or a pet. Today I am saying goodbye to the latter.

I woke up this morning and started my daily routine, let the dogs out, fed the rabbit, fed the fish in the pond and finally went to feed my two goldfish in the house. While one of them was swimming around ready for the food, I noticed that Tokyo (the biggest gold fish) had taken an odd position by the pump. "Come on Big Guy" I called tapping the tank. He didn't move. I watched and realized that his gills weren't moving. I watched praying that I was wrong. I watched and watched and felt the tears stream down my face. Just like that, he was gone. I feel stupid saying all of this. It seems that a 48 year old man morning the lose of a gold fish is somehow immature. I have lost other fish before without missing a breath and flushed them down the toilet. Not so in this case. I have a history with this fish. He has been with me for around 9 or 10 years, but the feelings go well beyond the time.

Early in our relationship, Ken and I were living in a very cute little craftsman style house. Ken loving gardening turned the back yard into an oasis! It went from a half dead grass patch and a lump of 30' bamboo to our own Shangrala. We acquired unusual plants, more bamboos and at the center of the yard was a Koi Pond. (well in reality it was a black plastic pond liner from Home Depot, but after hard work it looked magnificent). Instead of running out and grabbing Koi, Ken suggested that we start off with feeder gold fish. There were a family of possums living on top of the garage and we didn't know if they were fishermen or not. So one sunny Saturday afternoon we headed to PetSmart and grabbed a bag of feeder fish and some food. An hour later they were swimming around in the pond. Our project was perfect. We would sit on the teak bench and watch the fish for hours. Like I had read about koi, the goldfish started following us. Swimming up to the sides and checking the status of feeding time. This went on most of that summer until one morning Ken yelled for me. Some predator had gotten into the pond and the fish were gone. We looked around in the pond checking hiding areas in the water but turning up no fish. The color orange caught my eye and I found a fish on the ground. He had been bitten and was missing a circle of scales right behind his gills. I went to pick him up and was planning on tossing his body when the most amazing thing happened. He jumped from my hand back into the pond. We bought another bag of feeder fish so that he would have company and eventually one survived to become Tokyo's  buddy. It seemed only right to name him now that I felt some sort of connection to the little guy. Fish number two eventually took on the name Fluffy. (for the long fins, it made sense at the time). Eventually our house was put on the market and we had to move. Coming to the end of the move, Ken, much to my horror, suggested flushing the fish. "No!" I screamed. I just couldn't imagine being so heartless to an animal who had brightened our lives.

I had a large vase that become their new home and move by move our fish followed us to our home today. As Tokyo grew to fit each tank I kept buying larger and larger vases. In my mind he was the Godzilla of fish. I loved bragging at the pet store about how old he was. In reality fluffy is just a month younger, but Tokyo has always been the star of the tank and been given credit for the age. He has been there every day waiting to be fed. When I went into the hospital, I made sure over and over again that Ken not forget to feed him. Upon my return home from the hospital it was one of my great morning pleasures to feed him. After surgery I was so weak that picking up his food was about all I could manage. I would sit and watch him eat until all of his food was gone. I had been secretly hoping that he would live well into his 30's and beyond like Koi fish do. This was not the case. So thru my tears I said good bye today to one of the first survivors to ever come into my life. A little life that impacted mine in a big way.

Tokyo is a reminder that death is inevitable. But to me he is so much more that that. He has been living proof that you can go thru a near death experience and live a long life. In fish years he was 214! Not bad! With love (and I know a lot of people think I'm crazy for loving a fish) we can all live a long and happy life. That is Tokyo's legacy to me. Good bye old friend. (on a happy note, he must have known what a drama queen his dad was and went out with Elizabeth Taylor!)

Rainy Days and Radiation

Yet another rainy weekend here in "sunny" California. I had planned on laying low yesterday, until I was handed the honey do list. This meant that I had to be up and ready to get some things around the house done. The problem was that somewhere in my mind or in my body I didn't really want to. I woke up at exactly 10:20 am. Even for a Sunday that is really sleeping in for me. I sent Ken a text and started feeding animals while waiting for his response, which came some 20 minutes later: "You'd better get busy then!" "I know" I wrote back, but for some reason couldn't manage to get myself started. I just seemed sapped! I had no energy or desire to have energy. It was then that I began to worry. Am I having side effects of the treatments? I worried about that for several hours. How would I know the difference if I were tired from radiation or tired from sleeping too much? I could argue that my body needed the sleep but the reality is that when the dogs woke me up around three am I took another melatonin. I've done it before and only slept until 7:30. I had slept for over 13 hours. What was wrong with me?

I was taking a nap on the couch when Ken got home from work. He didn't say anything but it was clear that he was not happy by my lack of attention to the list. He went to start dinner while I snoozed and then woke me up to inform me that I could go and dish mine up. I did and started to eat but after a few bites realized that it wasn't setting well. I let him know, making him even more unhappy than before. I was informed that I could have a "green drink" or finish my dinner but I had to eat something. Fine, I'll have a green drink. I figured it would sort of pay it forward and I would wake up feeling fine today. After one final blow out over the dogs wanting to get up in the middle of the night, Ken stormed off to sleep in the guest room.

I was awakened at 7:05 and told to get up, which I did. I fed our pets and promptly hit the sofa to watch a chick flick, I'm still here on the sofa (in my defense I took a break to start laundry) obsessing whether or not I am suffering side effects. The answer came to be just before beginning today's post. Yes and No. I am sick of the rain! How much rain do we need to have? After 13 years in Long Beach, I have never seen it rain like this. I want the sun to come out! I was starting to feel so much better and then back to back started chemo/radiation and it started getting gloomy and finally started to rain yesterday. I am not suffering any side effects of radiation. I am not achy, my stomach isn't bothering me (I ate a quesadillia for lunch yesterday). And as for the lack of motivation, this is nothing new. My favorite thing to do when it rains is lay around and read. I wasn't an in-house over achiever prior to my illness so there is no reason to expect that I will become one after it. And yes I know that Ken would like me to do everything around here because he is the only bread winner right new. I understand how he is feeling. I also know that his tough act with me is meant to push me. He doesn't want to loose me, so seeing me weak isn't something he wants to see.  He will get his wish. I will spend some time prior to radiation today cleaning.

The odd thing about my radiation schedule is that it feels like a Monday through Friday job. Life goes on all around us. We get caught up in it and then we are faced with getting in our cars, driving (in my case to a shuttle location), being shuttled and waiting around for 3 hours all for 1/2 hour of treatment. It is at best an inconvenience! I was feeling so good too! I started to do Qigong! (an Chinese exercise to tai chi). Now I have this daily trip I have to make. No wonder, I'm feeling drained. I know that I have hit a bump in the road on my journey. I have been through this before. I also have an amazing group of survivors around me to give me advice so that I don't get stuck in the brambles for too long. And yes, I can honesty answer that given the option to feel good or lay around and whine I would rather feel good. Because of that simple answer, I know what I need to do. Get off my butt, get cleaned up and get on with LIFE! It is true: Rainy days and radiation can get you down. But only if you let them!