Kansas holiday

The best part of traveling is traveling with Jacki. She is calm and relaxed, seldom tense. Very good with inlaws and outlaws - they tend to gather around her and I love to watch her with them. She travels well. Probably only 2 pairs of shoes. Most of all, there is that abiding sense of loving between us. Let's go!

Kansas is where my sibs and Mom live and where my nephews and nieces are within reach of getting there. Mom's sibs and some of their grown kids are there. We gather near Wichita every last weekend of the year. Seems like all of a sudden my nieces and nephews have kids who are no longer babies.

Best moments in Kansas? New Years Eve with about 40 people in the big party room and about a dozen of them were under 10. 4 generations of my family reminded me I have always had backup. We ate well, got along, had great fun and I beleive all of us welcome next year's repeat. I think I have written in the blog before about my increased perception that family is where it's at. ( yes I know ending a sentence with "at" is a gramatical no no, but we decided you can do it if you want to. ;-)

Both legs of our trip, Missouri and Kansas, were one of my favorite holiday gatherings ever, in part because I am now more aware and sensitive to the meaning of family.

And I also have family here in AZ. My favorite daughter (OK only) Kate is here. Oh God how I love that girl! Jacki's siblings and Dad are here, and all of us celebrated a couple times. Kate brought her best ever boy friend to dinner at Jacki's brother Dan's home. Even the oy friend wanted to stay past when he could have gracefully left.

Missouri, Kansas, Arizona - are you getting the idea how spoiled I am with so much family where love is a two way street. Not a drop of booze or other drugs the whole trip for any of these people. We know how to have fun on the natch.

For years I felt but little part of those bonds of family. I did not know how to allow myself to be part of and appreciate the variety of people in my family. Rather I stood outside, on the fringe and often rejected the whole picture. Unable to receive, stealing their right to give. It has taken 16 years of 12 step recovery to reach the point of cherishing the "both feet in the fray" I am so privileged to experience. From rejection to jumping in - it is me who changed. The roots were always available. Thank you!

Cancer? In the back of my mind, while feeling the joy of each step of this trip, was the recurring thought, "Is this my last?" Maybe it was, and that helped me participate and appreciate even more each little moment. However, the truth is that I probably will be there again and even likely that some one else will be missing before me. "I am not so special just because I think I know how I will die." A mentor here in Arizona laid that one on me a few months ago and it has helped keep me in perspective since. She is part of yet another family I get to be part of here in AZ. Maybe I can write about them tomorrow.
Bill

In my face

It has been a month or more since last I wrote. That one was right after seeing the doctor after my last CTscan. I think I titled that blog something inoccous like "It's okay". I was lying. The radiology report said 1 (one) centimeter growth in the kidney tumor and similar growth in the largest lung nodules. One centimeter equals .4 inch. The kidney tumor was 9.7 cm a year ago, and now is 10.6ish.

Once again, the Doc was happy with the rate of growth. It appears the little white pill is working - slow growth. Then Jacki went to work and I went home. And hunkered down for two days. Looking back, I did not feel "good" like the Doc said, rather I felt somber. I really do have cancer and it is slowly growing.

Our Holidays were wonderful. First to Missouri to say a few days with Sharon and HF. So it was Jacki's sister and her husband, their grown daughter ( Jacki's niece) and her year old son (Jacki's grand nephew). As family we played games, talked, laughed and of course the babe was at center stage. Joy, peace and love was abundant.

Their home is a mile or so outside Jacki's small hometown, on a beautiful spot wth a pond. It snowed - real snow! I walked twice each day through the snow and around the pond. Each time I stopped about half way and breathed. Prayed. And breathed. The air there was so clean, fresh and brisk - almost sweet. I felt calm, almost devoid of thought and noticed the presence of God. I don't know exactly how to put it; I felt safe and loved, and I felt connected to all things created. That was perhaps the strongest spiritual experience of my life, and I was privileged to get it on each of several of those walks. No lightning bolt nor burning bush. Much more subtle yet deep and lengthy. It did not renewal so much as deepen my relationship with what is God.

Maybe I can get to the 2nd leg of our trip, Kansas, tomorrow. I think I feel better.
Bill

It's okay

Left the doc's office a few hours ago. I already told a few loved ones that the new scan showed no growth. Not quite true. The increase in size is measured in an approximate number of millimeters. It works out to a curent rate of growth that will take over 5 years for any of the nodules in my lungs to double in size. The doc is going to pick 10 of the nodules and graph their changes in size from first CT scan last January through each of the 5 scans since then. I go back to see that graphing on Jan 11.

Jacki and I left his office, both I think in an absorbing mode. She went to work. I ran a couple errands and came home intending to get a few things done and go to a 6pm meeting. Instead, I have holed up in my cave feeling numb and unsocial with my phone ringer shut off. Have not talked with anyone for over 6 hours which is a near record for me. My emotions are in a slow eddy, swirling but I think going down no more.

I have tried to find others with my particular brand of cancer, "Metasticized Papillary Renal Carcinoma" for those who are technical. Wikipedia says there are about 2,500,000 new cancer diagnosis a year in the USA. Of those, 50,000 are new kidney cancer diagnosis. That is about 2% of all cancers. The doc says there are only 3000 or so new cases a year of my little specialty form of kidney cancer. I would really like to find even just one of those 3000 new patients.
Bill

My Creator

My Creator,
It is Monday morning and in a few minutes Jacki and I leave for the doc's office. I ask that you please go with us; I'll hold the door for you.
Bill

CT scan blues

I like listening to the blues. If I listen, that seems to take care of having to feel them so much. Sometimes I get blue before the blues deserving event even happens, like today. My CT scan was Tuesday, my doc appt to see results is Monday when Jacki can be there too. So, as before each of my preceding CT scans, I get the CT scan blues in between the scan and the doc. The fear kicks up, the sad kicks in and I get diverted from enjoying a good day.

My back felt a little painfully tense waking up this morning. My head went instantly to, "Must be the tumor, tripled in size since last scan!" If a small cough or little wheeze comes out, then my head jumps into the lungs filling up with nodules conclusion. The frequency of such magnificent magnifying thinking spikes upward every six weeks when a few days separates CT scan and the doc.

On the other hand, I notice that since initial picture last January of my kidney tumor and lung nodules, ZERO growth has occurred in either. NONE! Including the 3 months before starting the everyday chemo pill, no growth at all in my cancer. So, maybe there is just no reason for the CT scan blues other than listening might prevent. So, here are the words to the first verse:

I got the cat scan blues.
Oh yess, I got the cat scan blues.
But as long as I hear them,
All I get is good news.
(harmonica break)

Sing it! I know you can hear it too. So, in a couple days I will let you in on the details of good news Monday.
Bill

What's it mean . . .

. . . to be a man?

Where did they come from, the rules defining what is a man? Maybe some men do not grow up learning the same rules, but I did and I see the results of those rules in so many men around me.

Writing this blog over the past, wow, almost a year, has often been difficult. How much can I reveal here? How can I express what is really going on instead of lounging in much more comfortable intellect? Is it now okay for me to be scared? No, not in my life nor in my own head nor within the "rules" of being a man. Only in recent years have I noticed another view of scared, "courage is being afraid and walking through it anyway". Still, expressing scared is a very awkward and uncommon act for me. As a boy and to some extent now, ridicule is the expected response. The "rule" for me seems summed up as, "A real man ain't scared of nothin'"

So what about sad? Much as my Dad received, at age 7 I received a backhand and admonishment that, "Boys don't cry!" I saw other boys ridiculed for crying when injured. "Men can stand pain!" So I didn't cry. Exceptions? Once at 16 when Grandma died. Blubbering drunk sobbing at my 1st divorce. Okay, so maybe a few tears rolled every 9 years, otherwise they were stuffed down inside as I tried to feel nothing. Drugs helped numb. I cried not one whit at my own father's funeral, instead plotting how to get in the restroom by myself to get numb.

Mad was not okay in my home growing up. The man of the house can get mad and show it in what I now know is rage. Throw, hit, belittle, cut with verbal blades. I hear today that anger is a natural human response to pain, but growing up I learned from those older than me to go from pain or fear into rage in a split second. But, only the top dog gets to do that. That's the rule, passed down from one generation to the next. Control your woman with fear and hitting. Tie thumbs together, hang over a door to hold the boy still for application of a board to the back. A few generations back, that was okay, but each ensuing generation of men in my tree was a little bit less violent. We all knew at some level it was wrong, but knew no other way to avoid showing some, according to the rules, sissy emotion. Coming down the tree to me, it was 1978, I remember it well when I used a backhand on 3 occasions, lashing out at my first wife. That is what I learned to do with mad - part of the rule book for being a man. I have never hit again, but I did use a lot of drugs as a plug on scared, sad, and anger.

Talking about any of what I am attempting to write herein, was just simply not done. No one knows what goes on behind closed doors, but the same goings on were apparently going on behind many doors. Stuff mad, sad, scared, intil the dam bursts in a fit of rage. Or the burst floods a pit of despair or depression. Our all too low self esteem is pounded into us by each other from what, age 4 or 5.

The rules:
1. Do not show fear.
2. Do not show sad.
3. Do not begin to be mad because that might lead to rage.
4. Do not speak well of yourself because that is conceit.
5. Do not speak well of another guy lest he get a "big head".
6. Discount any compliment.
7. Compare yourself to others, measuring less than or better than.
8. Judge yourself harshly but build yourself up by belittling others.

The rules seem to go on and on. I could add to the list and so could you. But I want to know, WHO WROTE THE RULES? How long have we been ruled as men by standards of perfection that can only result in failure. Every good job seems followed by a but . . .

Maybe that's just me. Maybe it's not just men.

Even with cancer, I have thoughts that I SHOULD be more spiritual, or eat better, or exercise more, or on and on and on . . . My sponsor shares with me about not talking bad to myself. Turns out I have been hard on myself for about 52 years (since age 4 or 5). I ask my sponsees, "How's that workin' for ya?" I must ask myself that same question everyday to help me steer into thinking and talking well about you and about me. I like experiencing me more concerned with being kind than with being right. I like to acting like I love instead of just saying it. I would like to ask myself, "Is what I am about to do going to divide us apart or bring us together?" I relish my progress away from being emotionally stunted toward showing what I feel. Cry when I am sad. At least say it to myself when I am in fear. I like becoming able to recognise and express anger directly but without malice. I like accepting that I progress and grow and learn and love, and arrive where I really have always been . . . hu-man. You too!
Bill

angry

I have been angry. Simmering beneath the surface of my consciousness. A few days ago, maybe a week, it bubbled to the surface through a crack called resentment. I did not express my anger directly, I just had a "justified" resentment. Justified resentment I am pretty sure means I get to focus my own ire at someone else in the form of blaming. Hocus pocus, change the focus, get off me and onto someone else what is really going on inside my own head. In early recovery I read, "What about the justified resentments? We find they are best left to those more qualified to handle them."

Often I have described, when asked "how do you feel?", how my emotions run the full gamut every day. Mad, sad, glad, scared, up and down, sometimes even despair and hopeless. I cannot remember the last time I felt hopeless before Cancer. Physically vibrant, tired, sluggish, in action or sitting on my butt (laurels?)give me the variety (roller coaster?). Those answers to "how do you feel" may well be honest answers for most humans on any given day. For me, it has taken cancer to help me express and see the rest of what has always been there - emotions that seem not okay to feel. I learned as a kid that anger is not okay for anyone except my Dad. Not blaming him here, he got it from his dad, who got it from his dad, and his dad . . . a gift that keeps on giving.

I come from a line of men on one side who hit, throw, and verbally assault to deal with anger. The men I grew up with who did not throw or hit or cut with words? Well, they stuffed it. Down and in not up and out. When I stuff it, it percolates into passive agressive thinking and behavior, or it mutates into depression. The last time I hit was 1978. Wife #1. That is a pain on my soul I feel to this day. Since it was not okay to be angry as a kid, and it came out so ghoulishly as a young man, I learned to stuff it. Part of the function of my drug use and abuse for 26 years was to keep a lid on the slow simmer of emotions stuffed. Sad, scared, mad - stuffed.

So, now I have been in recovery for near 16 years. No drugs. A little better at expressing emotions instead of stuffing. I can cry fairly readily and say "I am sad." Even scared is within my verbal skills to express. But anger is still very awkward and often squeezed into a different costume.

I feel anger about this thing trying to grow inside me and grab what seems everything so dear to me. Anger at the medicine (solution?) that near incapacitates me several hours of every day. Drags me down much of the rest of my day - easily tire, I am not as sharp or quick mentally. EVERY day I wake knowing I get to take poison guaranteed to rule much of my day. It pisses me off that I also must see that same poison as "my friend"!

Of course I feel sad about the many changes in my life and my loved one's lives. The impact on Jacki is profoundly stressful and she too experiences an emotional roller coaster. The coaster mostly is not extreme up and down, it is just continuously there in the background. It wears. I know that she contains her swings to protect me and I contain my swings to protect her. Maybe neither of us needs that much protection. We must not just stuff it, because that takes too great a toll.

My sponsor said underneath this anger is fear, My first thought was that he was full of BS and that I fear very little about this whole scenario around having cancer. Now, as his laser eye spotted it, I recognize and see the fears. My kind of cancer cells are fatal and there exists no cure as of this moment in medical time. I fear what that will do to Jacki, my daughter and those close in my life. My Mom would be hit so hard by a 2nd child going before her.

I fear being laughed at for feeling and expressing such fear and anger. "There goes Bill again talking about the cancer." I am angry about not getting to work and earn and spike my income beyond what SS pays me. I resent the wobbly physical symptom I get every day when I cannot drive and stairs are difficult. What about my persona of being Bill G, the strong, kind, loving, even, solid guy who helps and sponsors and speaks inspirationally. I am still all that, AND I get to be human including angry amd afaid. I am even going to be pissed off if any comments come telling me to push it back down, get it together and suck it up!

Intellectually I understand that I am grieving: anger, denial, bargaining - what are the other two? I am going through them too. Throw in some massive amount of self centered - thinking about me and not even asking about you. Inside it feels like a big jumbled up mess, a quagmire that I mostly keep tucked in what I think is out of sight. Yet some of you see it. You ask and I give canned answers. I must let some this stuff out, vomit it out if I have to, because what I have been doing is too hard, too tough and too unrealistic of expectations on myself. And to cover the truth is distancing from you and too much work for me. So let's not tip toe through the tulips. Be a little more human and real about what this is like. Stop comparing me and mine to you and yours - it never comes out even.

God's gonna take care of all of this. Maybe after writing this, talking, praying, I can move into faith that His will is pretty good.

I'm gonna post this before I chicken out and start rationalizing it all away.
Bill