Building Some Coping Skills

Hearing a doctor say to you “You have Leukemia” is a truly unsettling experience. For me, my entire life was frozen then instantly dissolved. In a flash I lost my entire life. I remained cognitive and somewhat animated, yet hardly in command of even the most basic instincts. Not only was this incredibly painful for me, it also prevented the doctor and me from covering some vital information, which this kind of news requires.

So how can one manage a better response? Simple - practice. Here are some mental tips you can do at home, at the workplace or while shopping. First, repeat daily and as often as possible “There is a God and I ain’t it.” Don’t give me crap about this. Your life depends on getting this one right, dummy! “There is a God and I ain’t it.” There is a God and I ain’t it.” If you find not being arrogant uncomfortable, you can occasionally modify this to read “There is a God and you ain’t it.” There are several occasions where the statement will serve you well. If you have company and are feeling friendly, a third modification can be applied: “There is a God and we ain’t it.” The bottom line is that this is the most important bit of real knowledge you will ever need to know, and you must know it with your complete being. “There is a God and I ain’t it.” There’s no point in going on until you get this into your thick head!

December 22, 2008

The reason I am asking you (who are currently in good health) to do these exercises is because I love you all. By having a mindset which employs these three principles, you may avoid much unnecessary anxiety and painful imaginings.

 The second principle is to implant deeply into your soul: “No one has an expiration date tattooed around their belly button.” Repeat this daily and often. “No one has an expiration date tattooed around their belly button.”

 I have exactly the same lifespan expectancy after I found out I had AML as I did before I found out. My first reaction upon learning that I had AML was “Am I going to die?” Then the first two principles kicked in: “There is a God, and the doctor ain’t it.” – and - “No one has an expiration date tattooed around their belly button.”

 Now that we’ve gotten through the bullshit, the doctor and I could speak about what we did know, which is “How can we deal with this?” Whether or not I was going to die was irrelevant. What I had to do to regain my health was the issue.

 And the third and most powerful thing we can do is celebrate life:

Monday evening and it’s cold. On this night, however, it didn’t matter - even went unnoticed. Baltimore, deep into the Christmas season, was not immune to the prevailing Holiday spirit. Under the multi-colored lights, the nuns were light-hearted, giddy and shivering as they helped a new mother into a car -  her infant wrapped up tight and warm in her arms. Bouncing from heel to toe, they waved as the car drove away. The exhaust, vaporized by the chilled night air, created angels in the steam which gracefully floated across the sparkling street. A new family was going home. What an outstanding time of year to be born.

...Merry Christmas , and God bless everyone of you.

January 20, 2009

There will be more and more information on AML and how to get medical financing as time goes by and I get stronger. For now I would like to talk about what I’ve learned about choices. First of all I will let you know that, in my humble but always correct opinion, God including freedom of choice in our human make-up is the single, absolute coolest, best thing He could have done for us.

 I will start off by saying this. While I was in the hospital six physicians and fourteen nurses attended to me over thirty-eight days. Each and every one of these people was attentive beyond belief. Each was competent, compassionate  and extremely respectful towards me as a person. I had the real sense from all of them that they were treating a human being, not a patient assigned to them or a disease.

 When it comes to your doctor(s) you have a choice. Don’t let anyone convince you otherwise. If you and the doctor in front of you are not meshing, it’s time for you to make a choice. And you have many choices to make. You can change doctors. This is most likely the more difficult, complicated thing to do, but it can be done.  You can exert yourself a bit and speak straight with the doctor in front of you about YOU. This is the simplest and yet highly complex thing to do. I recommend you try this (speaking straight) first because successfully doing things this way is very rewarding. There are many choices between these extremes. Common sense will lead you to the various variations invariably.

 Sometimes you have to remind your doctor that he or she is not talking to a disease but rather a human being with a disease and (by the way) feelings and in some cases a functioning mind. If you are like me humor is very important in a conversation. For me it is a great stress reducer. If the doc can’t or won’t lighten up (even just a bit) then I can’t or won’t be dealing with that doctor. Really. My policy towards doctors is: “Smile you shit-head or you will lose your chance to bill me!”

 If you end up in a hospital the same freedom of choice applies to nurses. If you are in a hospital, you probably already feel lower than whale shit. The last thing you need is some fawcan sour-puss, rude, dispassionate, bossy, disrespectful nurse bugging the shit out of you. Believe me there are those kinds of nurses as well as incompetent ones out there. YOU have every right and a sacred responsibility to yourself to get up with the people who make these kind of decisions and DEMAND not only a different nurse but that the offending nurse not be allowed back in your room. You don’t need a good reason, or some specific example of why you want to change nurses. You don’t even have to be rude or pissed off. The very fact that you are asking for a change is REASON ENOUGH! This is your responsibility. Who else is suppose to do this?  You can either choose to get a nurse with more compassion towards you  (or competency, as the case may be) OR you can choose to tell all your friends when you get home about the bitch you chose to have as a nurse.

February 6, 2009

Being caught by surprise with a traumatic event, like learning you have cancer, doesn’t have to be as devastating as most experience it. If your heart and head are in the right place, the impact on your life can be lessened.

Knowing there is a God and you or your doctor ain’t it, knowing there is no expiration date stamped on your belly button, knowing you always have the freedom of choice and knowing what’s coming next are tremendous aids. Now we are at the “knowing what’s coming next” phase. Everybody will tell you it’s different for everyone.  Only to a point. There are similarities and phases with enough in common that knowing them in advance just might take some of the anxiety out of the experience. Writing this I have my experiences to draw on as well as my being in contact with a diverse group of folks dealing with cancer - presently, recently and from years ago. We are all as different as can be personality-wise, gender-wise, age-wise and ideologically-wise (alright so sometimes I just have to make up damn words to make my point.) However there is most definitely a common thread in our experience which from now on I am going to refer to as “the trip.”

 The trip begins with being told you have cancer. All trips begin here. Mine did. My lifestyle, as I knew it, was totally erased instantly. It simply vanished within seconds of being told I had acute myeloid leukemia. It seemed as if all my most valuable relationships were being ripped away from me. That along with the most important thing in my life, my ability to paint in my studio.

 Fortunately my spirituality not only stayed with me but rose up huge in my heart. That is not always the case with people. I know of one person who has taken to the couch. Won’t accept visitors, calls or medical treatment. Barely communicates with the spouse.

 My first reflex was to get back to all those things that I defined my life by. However, I was about to learn a new definition of me. A definition reshaped by this most powerful and dangerous disease. Redefined but not entirely by the disease. I have a lot to say about who I am. It’s not having the disease so much as it is dealing with the disease, and that is my responsibility. Thus begins the trip ……

March 16, 2009

The Trip

The trip is comprised of many facets. Some silly, some noble, some frightening beyond belief. Some experiences are pure daytime, wide-awake nightmares. Some are lighthearted, albeit demented, flights of fantasy. During the time between my first biopsy and getting the results I had a recurring dream. I was in a land with quite friendly people who assisted me in refusing anyone to say the letter “o.” By preventing the letter “o” from being spoken it would indeed disallow my diagnosis of leukemia from being real.

 The trip mostly, at least for me, was more frightening than anything else. I met all kinds of demons in my fever induced nightmares. Many illusions of being physically pulled back from dark places. I was constantly losing track of time and days, having no order to any sleep patterns or meal schedules. I just did what I could when I could. I came to learn that this is a usual and expected part of the ordeal. I also ran into myself in my many forms: the spoiled brat in me, the frightened child in me and the arrogant, self absorbed egomaniac in me. I also had the chance to meet up with the noble adult in me.  The prayerful, parenting, patient, obedient Zen in me.

 Fear of the greatest magnitude ruled my days. Everyday I heard things from different doctors of what was needed to be done and the risks involved in doing them. Everything seemed to me to be death defying in scope. Not once did a doctor come in and say, “We must perform this procedure, but don’t worry, it’s a piece of cake!”

 The trip means completely losing your privacy in all respects. The trip means completely losing all control of your life. People by the dozens came into my room all hours of the day and night and told me what I had to do, what they were going to do to me and when I had to go do it. And throughout all this I was suppose to keep a positive, cooperative attitude about it all. My instincts were to tell everyone of them to kiss my ass and get the hell away from me. Something overruled those instincts. Somehow I did keep a positive attitude, overruled my fears and allowed what needed to be done to get done. It ain’t like me, but I did it. Don’t ask me how. I put it on the power of prayer, and I don’t mean that rote stuff you memorized as a kid. I mean that real, adult, lived-a-full-unsheltered-life, screw-the-bull-shit praying.

 You don’t get through the trip alone. When I didn’t understand or was just scared shitless about some procedure, I asked my doctor to come and sit and explain it to me until I did know what to expect. When things got so that I was scared out of my mind, Jeania was sitting right there by my side or rubbing my feet. My daughters were never more than a phone call away and busy with the day-to-day things like taking care of the bills so I didn’t have to worry about that. Friends were constantly emailing me, calling or visiting. The nurses would straighten me out at times, too. If I was confused by something, they would explain it. Sometimes they would just come in and tell me how great I was doing. Or they would stand there and listen to one of my long-winded, boring stories. Just to calm me down. The other thing you can do to get through this trip without getting lost is to leave recognizable markings along the way. Bring your favorite small, framed photographs of family and friends. My first stay at the hospital was for thirty-eight days. I am an artist. The nurses and doctors gave me permission to hang some of my artwork on the walls. In the times when I would get confused I would catch a glimpse of my paintings and the photographs and come back to reality rather quickly. My stay was over the Christmas holiday. Jeania and I not only decorated the room but we decorated my IV (my cancer tree) stand with garland and battery operated colored lights. This not only picked up our spirits but almost the entire nursing staff - at one point or another - visited the room. No one else on the floor decorated and the nurses needed a shot of holiday spirit as much as we did. Lastly, music. Bring music and play it as much as possible. This will keep you from CNN (the CartooN Network for adults) and the depression that accompanies watching it. Again, the nurses love it, too. They can hear it - instead of that damn TV- outside your room and most of the staff will be dancing a bit at some point during their shift. A happy nurse is a must for your recovery.

 The trip is far from over as of today. In fact it is only getting scarier. I feel as though every progress I make just propels me deeper into a darker swamp with murkier, more unsettling questions and procedures. My AML is rare and deadly. It is resisting conventional chemo. I am being asked to take riskier, more difficult and more painful treatments with even fewer odds of success then when we first started.

 I was hopeful and naïve in thinking this trip was going to come out to a happy ending by now.  All I’ve done on this trip so far - it seems - is to practice for a far more difficult mortal combat soon to come. And the support of friends that carried me through very rough times has quieted down, too. As if they, too, falsely believe the danger has passed.

 This trip is far from over.

March 28, 2009

The trip continues…….

Then there is the part when all the drama slows down. The doctor visits become routine. The blood testing becomes routine. The urgency slacks off a bit. Waiting becomes my daily chore. The doctors, Jeania and I know as much about my leukemia as we can. It is persistent. It resists conventional chemo treatments. I am not in remission. It is unlikely I will ever go into remission until I receive a bone marrow transplant.

 So I am waiting for a donor match. I am waiting for a dental appointment because I have to be certified by a dentist that nothing from a dental condition will erupt during the rigors of the intense chemo treatment I will receive as part of the transplant procedure. I am waiting to see how my blood levels are doing. As long as I am stable I will not be receiving chemo treatments. If the leukemia gets out of hand I will get chemo treatments to knock it back down. So I am waiting to see if I will need chemo before my donor can be found. I hate waiting!

I am waiting until Monday to visit my doctor and see if he agrees with me that I am healthy enough to travel to North Carolina for a week while nothing is going on here lately from a medical standpoint.

I am physically feeling better than I ever did since I was diagnosed. I am strong enough and fit enough to do what ever I want to do. I am in no pain. There is nothing abnormal about any bodily functions. My muscle tone is coming back. I can walk long distances without my walking stick. My mind is clear. My coordination is coming back. (Lost my hand/mind/eye coordination for a while. That sucks when you are an artist!) My sleep patterns are normal for me. My appetite is great, except I lost the ability to handle eating foods heavily flavored with garlic.

I am healthy enough to be bored out of my mind from waiting. I am restricted in time and ability to do the things I love because my immune system is so low. No gardening. No painting. I have learned the compromises to gardening. Gloves, boots and mask and short time-periods in the garden. Washing my hands a lot and showering after I am through for the day in the garden to get off all the fungus and pollen and bacteria and germs.

Painting is trickier. Can’t seem to find a safe place to paint at home. Paints, cats and carpets don’t mix well. The studio is too “artsy” … fungus, germs, dirt, fumes and chemicals from the oil paints, linseed oil and turpentine. Plus my style of painting requires my hands to get covered in paint. Need to find gloves that will not interfere with my ability to paint.

So I am in limbo. So healthy physically that it is too easy to slip into denial. Sometimes I dream this is all a nightmare which I will awake from in the morning. The results from my blood tests twice a week bring the stark reality of my having leukemia back. The conflict  caused by my physically feeling so well and my mental awareness of being so sick is the daily battle I am fighting.  I am learning how elastic my emotional stability is! Confidence versus intense fear. That’s how I spend my days. Minute by minute really. And never knowing which will rule and for how long.

 The prayers and well wishes from friends and family carry me through each day. Communicating with friends, old and new, are my sustenance. The constant support of my family is my safe port. My faith is my rock. Jeania is my life line. It is her and her alone who allows me my melt-downs and reminds me of how my life has been so blessed. She is wise in ways to know when to let me cry it out and how to bring a smile to my face.

She waits with me. I do like that.

April 6, 2009

Farther and Farther…….

I set my hands firmly on the table top. I push with my arms and stand myself up. Stepping aside a bit, I push the chair back to the table and turn to walk the fuck away from this nightmare. Then my alarm clock goes off. Time to wake up.

Waiting is so very hard. The only thing harder is when you are on the edge of not having to wait any longer, standing on the verge of the next phase. Standing and watching as the storm gets ready to hit and knowing there is nothing you can do to get out of the way. Just gotta set your jaw, lean in and take the hit.

And it’s going to hit.

 I am here within the curious mixture of waiting and going farther and farther along. Soon, very soon the doctors will be calling the shots, the nurses will be giving the shots and the next step of this process will be on its way. For me this whole experience is becoming a blur of emotions. A combination of feeling the thrill, the fear, the confidence, the weariness, the excitement, the expectation, the insecurity, the holiness and the hell of it all.

Oh God, am I enough for this? 

And still I have to go farther and farther……….

 I don’t want any part of this. I want to break away. Then comes the occasion when I go home to my hometown. I am surrounded by friends I’ve known for so many years. Through the hugs, the smiles, the back rubs, the prayers accompanied by the warm, firm touch of hands laid on me something happens. All the fears disappear. All the doubts disappear. The hectic ramblings of my mind are replaced with a serenity deep in my heart. I am not alone in this. I simply have my part in this. We are in this together, each with our parts.

Oh God, we are enough for this!

And still we have to go farther and farther……….