I apologize that I haven't posted anything for the last month or so. I have been in a prodigiously morbid amount of pain and have more or lest lost my capacity for vision in both my eyes. I am getting better though and my eyesight should return in a month or so. I have some really good posts coming up for you just give me a little more time and I'll lick this thing and get back to writing.

I love you all,

Max

Minimizing the effects of cancer treatment

Okay. Today I want to get into cancer and treatments and what you can expect and hopefully how to avoid it. Depending on where and what type of cancer you have, your symptoms may vary. Since I only have experience with brain tumors I won’t be able to tell you all the side effects involved with your particular kind of cancer. Fortunately the effects of chemo/radiation therapy are universal so I will still be able to help you out with that. I will start by addressing what cancer can and cannot take from you and then I will go into some tips about how to null the side effects of chemo and radiation.

What cancer and its treatments can and cannot take from your mind and body:

I’m sure you have heard all the terrifying rumors right now regarding chemotherapy and radiation. You will lose your hair, you will throw up everyday, food tastes like metal... Before you start worrying about that you need to take into account two things. 1: different people react differently to the treatments. I know a woman who actually gained weight while on chemotherapy to treat her breast cancer. You never know. 2: Remember what I said in an earlier posting about staying in the present. When you start dreading the treatments thinking “Oh God, how am I going to live through this,” it is going to be that much harder for you to get through it. It is really hard to maintain a positive attitude through these awful experiences but I can’t begin to relate how much easier they will be if you are in a good mood. Make friends with your doctors and nurses. Tell jokes. Make your nurses and doctors laugh. Stay as upbeat as possible.

As horrible and humiliating as chemotherapy and radiation can be, try to keep in mind that these treatments are saving your life. Every time you receive and injection of chemotherapy or get zapped by the radiation machine I want you to visualize the treatment fulfilling its goal. When the chemotherapy is streaming into your IV I want you to imagine the chemicals flowing through your bloodstream to the location of your cancer and attacking it. I want you to imagine the chemicals surrounding the cancer and just eating through it until there is nothing left. For every radiation treatment you receive I want you to imagine the radiation burning through your cancer until it is reduced to ash. By going through this visualization sequence during your treatments you are altering your thought processes to view the treatments as more positive experiences. This way, in your mind, instead of thinking that the treatments just making you sick, you now can think of the treatments as battling the cancer that is making you sick.

So you have made it through surgery and it is time for your first treatments. First of all congratulations for making it this far. I know the journey was not easy. Radiation, depending on where they are administering it can be devastating or completely unnoticeable other than a little less energy than you would normally have. Also keep in mind that different people react differently to the treatment. I had radiation to the head and spine so I got the worst of it. After the first treatment I started vomiting like crazy. After three weeks I had lost forty pounds. I’m not going to go into great detail about my wonderful six weeks of radiation therapy followed by my fifty-four weeks of chemotherapy but here are some tips and some of the odd effects that I experienced.

What the treatment can do to your body:

Again I want you to understand that the results I list are from personal experience and may or may not be an issue for you. I am writing this so you can be prepared for any eventuality.

• Hair loss
• Head hair
• Eyebrow/eyelashes/facial hair
• Chest hair, armpit hair, pubic hair and leg hair

• Nausea
• For me nausea was a big problem. I threw up two or three times a day for two years. After radiation some of my favorite food tasted terrible to me. I was hardly ever hungry and when I forced myself to eat I would throw up. The only food that I could eat and not throw up were (strangely enough): Cheese popcorn, olives with pimentos and on occasion Ritz crackers. After radiation stopped I immediately lost my craving for cheese popcorn but it was still something that I could eat without throwing up.
• Chemotherapy really messed with my taste buds. Everything tasted like I was eating metal (kind of like when you cut your mouth and you taste your own blood). I lost forty pounds during/after the radiation treatment and had to get a feeding tube. Feeding tubes are terrible. Do anything you can to avoid one. If you do get stuck with a feeding tube I advise you to make sure of a couple of things before it is inserted in your nose. First: make sure they grease it up real well. Second: I always thought it was less painful to insert when the end of the feeding tube is ice cold or even frozen when they shove it up your nose.

It is really difficult to remain healthy when you can’t eat. This means that what you do eat is very important. The healthiest things you can eat are vegetables. They are very alkaline and they provide lots of vitamins and minerals necessary for your body to repair itself from the chemotherapy ravaging it. I don’t know about you but I really don’t care for vegetables and even looking at them when I was being treated made me sick. The solution here is juicing. Get a juicer and start making smoothies. Later I will post a recipe for my favorite vegetable smoothie. I encourage you to be creative though. Cook up your own recipes that taste good to you. Also, I encourage you to use organic vegetables/fruit for the juicing.

• Skin problems
• Radiation burns the skin. This is like a sunburn times ten. Depending on the intensity of the radiation, the top layers of your skin can start to peel off (mine did). It is very important that you revitalize the places where your skin was treated after every treatment. I used Aloe Vera and vitamin E oil. Directly after (I want to stress the word after because if you do it before the oil will magnify the radiation and do even more damage to the skin) the treatment apply a little bit of aloe vera and vitamin E to the treatment areas. That night, repeat this process. Make sure that all of the oil is completely absorbed into your skin before your next treatment.

• Physical and mental fatigue
• This is a tough one. The radiation and chemotherapy treatments create a lot of physical and mental fatigue and there isn’t much you can do about it. If you are in good enough shape to take supplements in addition to everything else you already have to take there are a few things that help a little bit. Acetyl-L-carnitine and alpha-lipoic acid helped me a little bit for the mental fatigue. These are supplements that you can purchase at just about any health food store. Also green tea and just about anything with ginseng in it help to raise energy levels in most people. Other than that though all I can really recommend is exercising as much as you possible can. Whether it is walking for a couple of miles or walking up the driveway, everything helps. I got so frustrated from the fatigue at one point in my chemotherapy I got on my bike and rode around the block (the doctors still don’t believe me). Do as many things for yourself as you can. Believe me, I know it is hard but everything you do for yourself now is something you don’t have to fight to gain back later.

There are a lot of other little side effects too numerous to mention that I really don’t have any advice on so I have left them unsaid. There is no point in me planting apprehension in your head for no good reason. I want you to again keep in mind that some of the symptoms that I have described may not affect you. If you have any questions about symptoms that I have not addressed here please email me at maxletizi.blog@gmail.com and I will do my best to help you out if I can.

You have been thrown into a situation where you’ve been forced to fight for your life. In this mortal struggle against cancer you are fighting for your right to live. Make no mistake you are fighting a life and death battle. You were taken from your normal, everyday routine and plunged into a full fledged war and you are retaliating. You are all heros. The doctors can provide a lot of help along the way but it is you who ultimately has to carry yourself to victory. I love you all and wish you the best of luck.

Pain meds

Sorry folks. I've had a lot of good ideas to blog about but I've been up on a lot of pain meds lately and can barely remember my name much less write anything intelligible.

The Healing Power of Love

Many cultures have many words to describe the feeling of love. In the US there really is only one word to describe it. Be that as it may I want to look at love as an all encompassing force that surrounds your life. From “I love this chocolate shake,” to “I love my mother,” to “love my spouse,” to “I love my child,” and everything in between. Love is a wonderfully benevolent force that we are all blessed with. Each and every one of us has the capacity to love from birth. Some of us however forget, shield or otherwise lose our potential to use this wonderful tool we are given. For me this meant not fully living up to my potential for fear I might offend or hurt someone. For one reason or another (I may address these issues at another time) I have found myself shielded from the full potential of this wonderful emotion. One simply cannot live a full life without their emotions working at full efficiency. I was living under the superficial shell of relationships and wondering why I couldn’t succeed. My self esteem was stunted. I felt afraid to fully commit to any relationships for fear that I would be rejected. I constantly attempted new relationships without getting too deep in the ones that I had already started. In this way I could go through life without really risking anything. I’m now going to tell the story as to how I was finally able to thwart this self imposed shield and then I am going to offer an exercise that you can follow and hopefully achieve similar results.

Yesterday was a wonderful day. I got up, took a bath and then had my friend Chris over. We had a good long talk under the afternoon day sun catching all the lovely rays of sunlight my patio had to offer before exploring my garage and then settling down in my chair for some video games and a movie. That is quite an eventful day when you have cancer and I was tired when Chris left. Happy but tired. It just so happens that I was having such a good time that I neglected to take my pain medication. I currently have a tumor pressing up against the nerves that govern the feeling in the right side of my face. This involves the right eye, ear, half of my nose and tongue, and of course all of the skin. That evening my right cheekbone felt like it was being stung by thousands of enraged wasps. Directly under that my face felt as if I had a professional baseball team playing home run derby using my face as the ball. I swore I had accidentally bit off the right half of my tongue but every time I checked it was still there. Something immediately behind my eye seemed to be threatening to push it out of its socket and my ear felt as if someone was continuously inserting white hot skewers into it. I felt the hot blood rush up out of my ear after every skewer but alas the temperature changes where nothing more than a cruel illusion. Just like the rest. I begged for death but the torment perpetuated. Lost in my own agony I could do nothing but feel anguish.

It was then through the thick fog of pain that I heard a familiar song. It was “The Nearness of You” sung by Nicole Henry. Glorious memories from my past began to well up through the haze of agony. I remembered playing pingpong for many hours at a time with my best friend Ben. I remembered the taste of raspberry custard from the restaurant atop the hill in France. I remembered the sweet aroma of my mothers apple pie mingling with my fathers fresh pasta sauce. I remembered the sunset at Yosemite. I remembered the warmth I felt with each Thanksgiving and the thrill of Christmas when I was a little boy. I remembered the miracle of running headlong into the pouring rain and the senseless joy of rolling around in the mud. I remembered thrill of riding inside the tube of a wave. With each of these priceless memories came a tear. I laughed so hard I cried or perhaps I cried so hard I laughed. I was swept up completely in the euphoria of the moment. I felt the touch of the sunrise at the beach caress my broken face as each tear left its mark. With my family around me I wailed as the beauty of life swelled up within me to the bursting point. It took all of five minutes for the damn to rupture and finally I was again alone. My family sat all around me and my heart had finally let down its shield. I no longer felt afraid. The pain was gone and now I can finally live a full life.

Sometimes during life your pain can reach a summit so high that you simply don’t have the proper tools to hold on. When you are in this state of mind you are suffering not only physically but emotionally as well and it is unlikely that you are in your right mind. It is very tough to make rational decisions when in this state. It is for this reason that I have designed the below exercise.

Find two or three songs that are calm and you can really connect with. For me these songs are:

1. “Nearness of You” sung by Nicole Henry.
2. “Over the Rainbow” by Israel Kamakawiwo`ole
3. “Send me on my way” by Rusted Root

It is important that the songs you select are keyed to your pleasure and not just imitating my selections. Now I want you to take a few deep breaths and try to relax. Close your eyes and think about relaxing your entire body from head to foot. Start the first piece of music. As the music plays, feel the familiar joy welling up within you. As the song progresses try to remember your childhood. What can you remember that you really treasure? For me it was spending time with my friend Ben and jumping over garbage cans at my Montessori School. Remember parts of nature that just take your breath away. Perhaps it’s flower or sunsets. Maybe it is the ocean or the feel of rain. Maybe it’s the colorful birds that flew over your porch every morning when you were little. Let love engulf you. Relax your control on your consciousness and feel the love well up into your heart. Let it surge through you and just experience the ecstasy of letting go...

When you are finished, turn the music off and breath. When you feel comfortable open your eyes and come back into your body. Be creative with this exercise. Remember joyful events that are keyed to all five of your emotions. I had very little choice in the events that I remembered. I felt like a bystander throughout the whole thing and I have a feeling that you will too.

Happiness lies in the present

I’d like to take this opportunity to discuss time. What is time? Is it a compendium of years, months, weeks, days, hours, minutes and seconds? We look at the clock and see that we “lost track of time.” “Time flies when your having fun.” Why is that? It seems like last year went by really quick. Why? When you’re really sick, time seems to drag on and on. You sit in the hospital bed with a thermometer in your mouth thinking it most have been two minutes by now. Finally after what seems like hours the nurse comes and takes it out of your mouth. As you sit in the MRI and listen to the “clank, clank, clank. Bonk, bonk, bonk, bonk, bonk,” over and over again you would swear you’ve been in there for the whole day.

The reason time seems to slow and speed up is because time is relative. Much like the speed of light, time is not a fixed entity as we make it out to be. As Einstein said "The only reason for time is so that everything doesn't happen at once." Calendars and clocks were conceptualized by man therefore they have no bearing on what you perceive in the natural world unless you let them. This means that if you choose to, you can live a lifetime in just a fraction of a second. Everything that you experience, you experience in the present. You can’t change events that have already happened. You can’t know for sure what is going to happen in the future. All you can do is guess.

Okay. Where am I going with this? For me to understand how to live in the present and experience every moment of my life, I had to first understand what I have just explained. How can one possibly be happy when they know they have to get a chemotherapy treatment tomorrow? How can one live happily after their doctors have revealed to them that their death is short to come? The answer is: they can’t. Living with that kind of malicious shadow overhead can only lead to anger and depression.

There is a saying by the transcendentalist Ralph Emerson "Yesterday is history, tomorrow is a mystery, today is a gift - that's why they call it the present." Turn your focus away from what has already happened and what you fear in the future. The key to true happiness lies in the moment. Take a walk, or a crutch, or a wheelchair ride out to the park. Go for a boat ride. Look around. See the beauty of life sprouting from the blossoms of an apricot tree. Watch the sun reflect of the snow as the sun rises. Feel the wind on your face or the spray of the ocean. Smell the sweet aroma of a rose. Hug someone you love. Life is just a series of moments. You can choose to live those moments in your mind dwelling on the future or the past, or you can live them and feel the rapture that is life.

I'm going to stay

I lay in bed in the middle of a dark Friday night. I was in a lot of pain so I couldn't sleep. I stared at the walls contemplating when my cancer was finally going to claim my life. I rolled back and forth in my bed in a futile attempt to get comfortable. My face writhed in agony as if it were being assailed by thousands of pins were constantly prodding it. The tumor had swelled over some nerves in my neck and shoulders creating a fresh sea of suffering for me to drown in. As I stared at the wall my pain began to spontaneously recede. My body began to gradually relax and my breathing evened out.

I found myself among a small meadow in a circle of redwood trees. Lying flat on my back I felt the warm glow of a pleasant afternoon sun caressing my face. There was no pain. Insects shimmered in the sunlight as they danced above my face. Like thousands of tiny prisms each insect glistered against the sunlight casting every color imaginable into the fairy circle. Sheltered by the ancient redwoods I felt an overwhelming sense of sanctuary.

As I lay in peace, the ground directly below me began to glow. The white gleam steadily grew in intensity until its radiance reached that of a gleaming star. At the culmination of the dazzling light a ray of pure white light began to ascend towards the heavens. The light was warm. It permeated through my body as easily as water flows through a stream. While the effulgence soared infinitely skyward I felt the foreign sensation of leaving my body. As the light ascended so did I. I felt the rapture of leaving my mortal shackles behind and moving on. No more pain...

It was then that I heard the voices of thousands in a choir trilling their otherworldly melody to me. I felt their message more than I really heard it. Come with me. Come with us. I felt the ethereal message chime through my conscious in an infinite flow as I rose toward the sanctuary of the heavens. Too overwhelmed by bliss to think, I let the light take me.

A diminutive utterance somewhere in the deep corners of my mind was screaming. I tried to block it out to no avail. How was I to delight in my current euphoria with the vexation of responsibility to some vague recollection of influence? The cold sensation of ambiguity was raising its ugly head flooding my mind with reason. I'm not done yet, I thought. Stay. The words became my resurgence. I'm going to stay. I rallied my strength and resisted the sweet draw of the voices.

I felt myself slam back into my body. I felt the screaming pain in my face. Exhaustion poured over me in a wave and my shoulder shrieked in agony. I opened my eyes to see I was back in my room. Darkness shrouded my tangled bed coverings. I turned over to see the unlit outline of my brother sleeping in a chair beside my bed. It was then that I noticed that I was still speaking the words "I'm going to stay."

The beginning

When I was 12 years old I was a physical titan. I was on the basketball team, the tennis team, the volleyball team, the track team and I also took martial arts classes on the side. I was at the peak of my athletic ability at twelve years old. I was bigger and stronger than most of the other kids my age and I enjoyed dishing out subtle reminders to my peers to maintain a distinguished social status. In the fall of 2001 I started getting double vision and headaches. These symptoms were subtle at first but gradually increased. My friends started to notice that I was getting somehow slower. Eventually the headaches were getting so painful that I was passing out for brief moments throughout the day. I thought “they are just growing pains. Stop being a wuss. Everyone else has to deal with them, you’re just being weak.” It wasn’t until my parents and other observers began noticing that I was seeing double that we went to see an optometrist. I saw two of everything. I would shoot a basket and depending on which basket I shot at I would score a point. When playing tennis I saw two balls coming at me and had a 50/50 chance of hitting the real one. There were a lot of interesting situations like this and finally it was time for that dreaded trip to the eye doctor. Nothing could have possibly been worse. I was going to have to get glasses! People were going to think I looked like such a dork in glasses. When I got to the optometrist though, he told us that I had perfect 20/20 vision in each eye...

Long story short, the optometrist was curious so he sent me to an ophthalmologist. The ophthalmologist dilated my eyes and concluded that I had a swollen optic nerve and told me to get an MRI. I was at Sonoma State University watching a college girls volleyball game with my friends when my parents walked in looking grim. They took me out of the bleachers with no explanation and forcibly ushered my into the dark parking lot. I knew I was in big trouble but I couldn’t think of what I had done for such harsh punishment. I was in more trouble than I could have ever imagined but it wasn’t the kind of trouble I was suspecting. I had a tumor growing inside the fourth ventricle in my brain. We rushed to the nearest emergency room and the doctor on call looked at the MRI. He told us that this kind of tumor was inoperable and that I had about two more weeks to live. Naturally I was upset. That night we took an ambulance to a hospital in San Francisco and the doctors there gave us much more optimistic chances of survival. I was transferred to Lucile Packard Children’s Hospital and in November 2001 I had brain surgery. The tumor was successfully removed after a nine hour surgery and I was ok (well, as okay as one can be after brain surgery). Then came the really bad news: I had six weeks of intense radiation “therapy” to the head and spine followed by two years of heavy chemotherapy. The next two years were what I imagine would make hell seem like a day spa.

I was about 18 before I had recovered from the treatments (and when I say recovered I mean about 85% of where I was). I was like the trophy survival child down at Lucile Packard. The doctors were downright giddy when they saw how good my body had responded to the treatment. I was totally cancer free until January 2010. Then low and behold I got another visit from my old friend double vision. An MRI revealed that something I had something foreign in my right sphenoid sinus cavity. The doctors didn’t know what it was. After a cranial surgery that I can’t remember the name of, they took a sample of the tumor. The biopsy revealed that the tumor was in fact a stage 4 sarcoma, a very rare, aggressive tumor that usually arises from previous radiation treatment. Because of its location among many vital nerve clusters the tumor was deemed inoperable by the tumor board. My only option was an experimental radiation protocol which involved six weeks, six days a week, two times a day of radiation to the tumor site. Would that cure the tumor? Would that shrink the tumor? Would that even stop the tumor from growing? “Maybe” was the answer on all of the accounts.

Do I want to try using the perpetrator of the cancer to try an cure it... That really just seems like a no brainer to me. On the other hand lets say it does work and it shrinks the tumor a bit. Do I want to extend my life for x amount of months feeling sick and victimized from radiation treatments? The answer is no, not really. This by no means entails that I am surrendering to death. It simply means that I am going to go about fighting the cancer a different way.