Sunday, May 31, 2009

Look in the mirror

Looking at pictures of myself, from the convention, from recent family gatherings, I see a guy with a pale face and a red nose. I think I look worse than I feel, and my vanity kicks in. Pictures of me have looked odd to me for a couple of years. My face is rounder, my teeth are more crooked, my belly is bigger. My self image, my physical self, is low right now, as I write. Intellectually I know it is from the pill, from cancer, from getting older, from the hard life I have lived. "If I had known I would live this long I would have taken better care of me."

And then there is the mirror. Not the one I examine myself and practice making faces in, but the mirror that you are. You who see me and hear me and tell me what you see. "You look good!" is a frequent comment. But more revealing is like Linda's comment from my last post. "I love you", "I like being with you", the smiles reflected back at me, your phone calls, texts and emails. Maybe most of all, the hugs, tell me a different story than when I see pictures of the pale face with the red nose. I know I am not alone seeing the worst in me but having the best reflected back at me. You are that mirror. Thank you!

I had the catscan last Tuesday, but I won't go over the results with the doc until Thursday the 4th. Sure seems a long wait. The doc is out Monday and Thu is the next day Jacki can schedule to go with me. Too many what ifs and yes buts and how abouts run in my head when I let the faucet of my thoughts start running down that trough.

Jacki has a friend whose husband has the same exact kind of cancer - papillary renal carcinoma. Mine is metastasized (into my lungs) but his is not. I use the present tense about him, but the thing is, he died a couple days ago. After 5 1/2 years of life post diagnosis. That is longer than any of the doctors have suggested to me, and so it is in a way good news for my case. But it sure brings it home to me about where I stand. Easy it is to turn to a slippery slope of despair and forget about cures and miracles and maybe responding well to the poisonous little white pill I take every day.

Friday and today I got to play chef for to different segments of my family. Best steaks I ever grilled were the ribeyes on Friday, and the burgers today were pretty good. My sister Gina is still here, until Tuesday. Movie and hanging all afternoon with Kate and Jacki and Gina Sat afternoon. Today the contagious laughter of little kids and shared stories and smiles with the adults. A couple sponsees did step work with me, and a few guys were over last Thu. Calls from some of them every day. This is my life. It is rich in relationships with people I get to say to and hear from, "I love you!" Mine is to feel incredibly profound gratitude for the fullness of life I am privileged to experience right here and right now. Thank you.
Bill

Thursday, May 28, 2009

Okay, I'll write!

It is difficult for me to describe the small subjective effects of the little white daily chemo pill. Most days I take it between 1 and 2 pm. 15 to 30 minutes later it hits. My head gains a jello sensation - no, harder like a memory foam mattress. I get a little wobbly and do not feel safe driving. Most days about an hour into it, I have to get horizontal and some days actually fall asleep for 30 to 45 minutes. Rarely longer, and more frequently I just linger in a semi sleep mode.

Numb or flat are the best words I have found to describe an encompassing mental and physical sensation. I will have moments, maybe minutes of spark but not fire, just a wisp of smoke. I forget what I am doing many times a day. Recently the effects are stretching into more of each day and I feel them in the mornings a little, even before today's dose. If this stuff works, I will be happy with several times the impact on my head and my body. My immune system is down: slow healing, a persistent cough from a cold I had 2 weeks ago. I have an ingrown toenail for the first time in my life. The hairs on my fingers, hands, and parts of my arms and legs feel like I got too close to a fire.

Good grief, this goes on and on, such is my life today. Except for the good parts. They still make up most of my moments. My daughter graduating was big. My sister is in town for eight days. She went on a twelve step call with a sponsee and me yesterday. Maybe the guy will stay off heroin, but Gina and I shared the spirit of giving together in a way that gave her a sense of what my life in recovery is about. We feel closer. I have not shared this kind of time with her . . . ever! And it's a treasure.

But the small things give small bursts of steady joy that make daily life an engrossing experience. I have ridden the new light rail from Tempe into central Phoenix a couple times. Feels like a real city living within earth friendly parameters. The people riding mostly seem friendly and happy; ready to engage in banter and discussion. Lots of smiles.

Ever eat a seedless grape, the red skin snapping into the soft sweet heart of a small little delight? Whoever designed this man altered morsel also designed the man/woman who figured out how to make it seedless. That designer also is on my side whuppin' the cancer. I feel pretty good about that!
Bill

Sunday, May 17, 2009

Feeling Good

Physically I do not feel well today. I have a cold for the first time since I stopped smoking over 3 years ago. The cold is moving into my chest with the resulting cough and hack. My stomach muscles are sore. Is my immune system down because of the little white chemo pill? Probably. Too bad this cell killing medicine isn't selective enough to just wipe out cancer cells and leave white blood cells alone.

2 more weeks and I get another catscan to look at how much the lung nodules have shrunk. Getting the cold I think indicates it is working. For now, I'll take it.
Bill

Wednesday, May 13, 2009

Not much

Not much to say today. Mostly today I have hibernated. Probably over did it yesterday - not much stamina these days. Each day I feel some level of dread about taking my friend, the Little White Pill. It seems to have now settled in to a predictable effect on my body and mind. For two to four hours after taking it I get to feel hinky or squiggly or twitchy - I have not found quite the accurate word. Then throw in tired and sluggish thinking. Still have some minor acne-like rash on my face. That's about the sum of my side effects.

The thing is, I would gladly suffer more if that's what it takes to whup this cancer. I am grateful what side effects I get from this chemo are relatively minor, but it's just gotta work. If more discomfort increased the odds I would gladly go there. Some of this stage in the process is very similar to the waiting a couple months ago for the diagnosis to be pinned down. I want to know how well my friend, this Little White Pill, is working. Tick tock. Probably reason number 47 why hibernating is not good for me right now.

Date night this evening with Jacki, and Kate is joining us for dinner. I have talked with a few guys in recovery today by phone. So there is my relationships leg of dealing. I will walk at least to the mail box - there is at least a little of the physical activity leg. I guess I did do some recovery stuff today - read JFT, sponsorship, pray, so there's a bit of the recovery leg. Okay, I won't talk bad to myself saying I was lazy today - I did more than I thought. cya tomorrow.
Bill

Sunday, May 10, 2009

MBA Girl & Moms

Wow! What a weekend! Yesterday I was privileged to watch my only child, a young adult I admire, graduate with her MBA degree. All the pomp and circumstance, cap and gown, the whole 9 yards. Good thing I had strong buttons on my shirt 'cause they wanted to pop off. And then, she just had to have sushi to celebrate and she has found a nice little mom & pop place with excellent elegantly displayed sushi, sashimi, and even some cooked stuff for less refined taste buds. ;-) What a good time we had! Thanks Kate!

Today of course is Mother's Day. Some of the mothers I know, because of wreckage of the past from active addiction, are not in their children's lives. How sad those stories are, yet I have seen such depth of emotion, bonds and longings that run deep to the core of all those women now that they are clean and recovering. I have been privileged to watch some of those torn apart bonds reconnect and heal through the recovery process. Some of the women I know however, no matter the quality and depth of their recovery, no matter their desire to set things right, never experience the opportunity to again know their children.

I say all that because I am so grateful for being so close with my daughter, and knowing my Mother, feeling her love, all my life. And I appreciate all those women unable to reconnect with their children who give in so many other ways. Their children would be proud of them.

Cancer? Even that fades into the shadow of the importance and power of mothers and daughters and sisters and wives. Often I miss the boat of understanding them, but they are awesome, so I keep paddling, hard, to catch up.
Bill

Friday, May 8, 2009

What to Say?

Most of this blog has been oriented to get what's inside me out into the light. Whatever gets stuffed down and in still comes out - sideways, often in the form of bizarre behavior. Sideways used to work for me, but at the expense of others and to my relationships. Stuffing it is not useful to my health and in this case fighting cancer. Rather, stuffing feelings down and in feeds cancer and every self destructive thing in my life. God help me get it out.

It's probably a culmination of fear, sad, grief, depression, shock, but this little white chemo pill has put the biggest lock on feeling much of anything. My body is tense from head to toe. I need a sleep aid. I feel numb, dull, shadowed, and closed.

This poisonous medicine has built up in my system to where it must be to be effective at shrinking my tumors. The effect on my brain however is very frustrating. Each day has from 2 to 5 hours of near debilitating cloudy thinking, increased forgetfulness, and decreased coordination. My balance is shaky and sometimes I should not drive. The side effects were predicted to be acne-like rash (minimal now), diarrhea (none yet) and fatigue (some of every day). Maybe the increasing levels of brain centered difficulty is a just for me side effect. How special is that?

The longer I have been clean, the more light weight I have become with many OTC and/or prescribed drugs. 1/8th of a sleep aid. One Dayquil capsule instead of two. Finding an effective medicine to treat my depression was a very long process of trial and error through about eight different drugs. Each tiny increase or decrease had a definitive noticeable impact on me. I suppose therefore that the little white pill (chemo is my friend) should be no different. Its effects on me include some not even noticed by other patients or acknowledged by doctors. Certainly not mentioned to me before starting. Even in cancer I have become very sensitive to drugs.

None of my subjective and nebulous symptoms are that big a deal. As far as chemo goes, my oral stuff is a breeze compared to IV treatments that overwhelm patients. I am grateful for that. The ego trashing I gave myself over not working is finally swept away - there is no way at all I could do any job with any structure or regularity. Even social security was easy for me to qualify. No check until August, but at least I know something will be coming in.

Jacki told me to write. It has helped a little. Wrote this one with no tears; a first. I'm not sure that's a good thing, but it's where I am today. Thanks for hanging in there with me. Now, there's a tear.
Bill

Saturday, May 2, 2009

Cloudy

It has been very difficult to write recently. My brain seems cloudy. I am out of touch with what is going on inside me - how I feel. My body is tense, jaw is clenched, neck is knotted, legs remain "at the ready" and my brow furrows. Meditation is virtually non existent and prayer feels disconnected. Depression hangs on me more than anytime since this process started in early January. What is up?

Monday is one month of taking the little white pill (chemo is my friend). The pill basically is poison hopefully directed mostly at the nodules in my lungs and the baseball on my kidney. I know it also effects my skin (the rash/acne), my brain and my energy. Slogging through mud describes part of each day.

I write that stuff and my head goes immediately to self pity and moping and self centeredness. "they" will think I am whining. The truth is that I go there each day, multiple times, but not all the time. I also spend some time in gratitude, empathy and compassion for others. The two ends of my emotional spectrum revolve moment to moment.

Topic at the meeting last night was self honesty. Someone shared about being afraid of looking bad and I can sure relate. But then I had another thought. If I risk looking bad with many of you then I do not look bad, I look like you. We are similar. This cancer crap would be tough for any of you as well as me. I am not alone and I am not different. It is my business how I feel and it is my responsibility to try and get it out in the open - talk and write and pray. I can lean into it by leaning toward positive, gratitude and spiritual connection. I can tell the truth. Except when this dam* drug has me so balled up that I cannot recognize what I fell or even think. That's where you guys come in - the mirrors to help me see. I love you too!
Bill