Sunday, December 26, 2010

Long Slow Drawn Out?

2 yrs ago I learned I have cancer and saw the CT scan pic of a baseball sized tumor on my right kidney and one radiologist saw, "too many nodules to count" in my lungs. Turns out the nodules are kidney cancer cells spread into my lungs. I went Mayo Clinic, surprised for some reason that I got to go there. After much poking, prodding, scanning, etc, they gave me a very invasive biopsy, sticking fingers and equipment between my ribs. It still hurts where they took chunks out of my lung.

Bottom line, they made a diagnosis, told me I had 18mos to 2yrs, and referred me for a 2nd opinion. Turns out they were a little off on diagnosis: they urethelial but it turns out to be kidney. Either way, the cells are papillary cells which make my cancer unusual and as of 2yrs ago, incurable. mPRCC. Metastasized Papillary Renal Cell Carcinoma. Metastasized means spread into other areas of the body. A papillary cell has kinda like fingers, which grab into surrounding healthy tissue. Renal means kidney. Carcinoma is basically a lump of cancer cells.

Now I don't know about you, but until it hit me, I thought cancer was cancer. Now I know there are a couple hundred kinds of cancers. Some can be removed. Some respond well to chemo or radiation, and we have all heard of cancer just disappearing. I would never have guessed there are several types of Kidney cancer cells and several of lung and breast and bone and blood. I would never have guessed I would get a slow growing type of kidney cancer that at best can be slowed but not stopped with current drugs. Today when I see or hear about "find a cure for cancer" or especially when I hear, "give us money to find a cure for cancer" I wonder who it is that thinks they know what that means. I do have a cynical side.

So, here I am. One year passed, 18mos passed, and now 2 years. My cancer has grown slightly although the drug combo trial I am on showed tiny shrinkage 3 months ago. There may be tiny cancer spots on a couple of my bones. They may want to put me on an additional chemo drug for that. However, I most certainly am not dead. Not in a box. I have not passed (please do not ever use that term about me). I am still with us, involved, useful and grateful to still be kicking.

Only recently has it sunk into my head that this process could go on for years. One, two, five, ten? Current drugs still cannot cure it nor even stop it, but they sure seem to keep things slow growing. Maybe a cure will be developed within those possible years. I hope so. In the mean time, what is my life about? If I have only 6 or 7 hours per day, half a.m. and half pm, then what can I do with those hours. The hours are a little bit predictable and a little bit regular. Sometimes I am just out of it for a whole day or two.

Some who read this tend to think I need to be told that I need to eat right, or meditate more, or pray more, or think positive. Some have indirectly or directly implied that if I do things right then I can cure this cancer. Or, if I had lived right I would not even have cancer. What do they really mean by those words and implications? That it could never happen to you and if it did you could fix it? Come on, give all a break when we suffer a human malady. "I am here by God's grace and mercy, I ain't with no controversy."

Somehow that leads me back around to what is my life about? What can I do? Each hour of each day I can do the best I can. I can ask for help, from up on high or even at a homeless shelter. I can give whatever I can. I can seek patience, tolerance, wonder and awe at how joyous so much of my surroundings are. I can become more honest and gently direct in my communications. Do we really need elephants in the living room that no one talks about?

What can I do? I could just be stuck in fear and sad and anger. Or,I can continue being part of the medical community PRACTICING medicine. I can seek all the qualities and spiritual principles that add up to gratitude and love. I can enjoy efforts at being a kind, gentle and loving man living a wondrous life with wondrous relationships. I can relish the moments of humility being Bill Banana, one of the bunch.
Bill

Wednesday, December 15, 2010

Try to Write

3 people worked me over at dinner last evening about not blogging much. I said I just have not had much to say and did not know how to start when I do want to say something. Jacki said, and she is right as usual, to just sit down and put my fingers on the keyboard and see what happens. So . . .

I know that part of what holds me back is knowing that to really put myself into this blog, I must tell the full story. Yes, I have cancer, it is currently uncurable and side effects of the chemo/poisons I take to slow the growth are often near intolerable. I started the everyday little white pill in April 2009 and the life commanding side effects have ruled much of my time and efforts since. In July this year my case became part of a drug study combining the Tarceva pill with Avastin which goes in my arm every other week. The two drugs together have given a tiny bit of shrinkage and added hope. Diagnosis and medical intervention.

The Avastin immediately gave me high blood pressure and so I take two more drugs to manage my BP.

The rest of the story includes serious chronic clinical depression. Looking back there are some signs of this even back into adolescence. The social security reports we all get every year shows dramatic swings in my income just as one fiscal indicator. The dollars vary from well over $100k a few years to $0.00 in a few other years. Five marriages might suggest some undiscovered malfunction. Only in 2002 did I begin to end my denial of my own depression. I remember before even ridiculing people who claimed clinical depression. One of those people committed suicide soon after my ridicule. I know I did not cause it, but I sure did not help.

My depression was never the frequent suicidal thoughts - never gave that more than a passing thought, but was aware that I could go there. My depression instead is felt much more physical, a "slogging through mud" feeling that just would not lift. I missed many days of work and backed out of invites and commitments frequently. It is very hard to explain and still is shrouded with shame, but there came a time when I just knew something was broken and beyond denial. Someone gave me a helpful analogy: when an arm is broken we put it in a cast allowing it to heal. When an organ is malfunctioning, we treat it with medicine and diet, exercise, etc. Well, guess what, the brain is an organ and medicine, diet, exercise and relationships can be the healing cast.

Through trial and error, my specialist and I found the drug that best manages my depression - maybe slogging in water now but not mud. She says I am a light weight, impacted by very small changes in dosage. Diagnosis and medical intervention.

Now, a big part of why I have had difficult time blogging and getting real: way before diagnosis of depression and even longer before cancer, I was a drug abuser - an addict. Writing this breaks my anonymity and I am not sure all who read this are my friends.

In early January I will have been clean for 17 years. I used "moderately" for 21 years. Can lying everyday to cover my everyday use be called "moderate"? And then I found a go-fast drug that took me down fast and hard in just 4 more years. I am talking acre horse property in north Scottsdale, pool, big house, pretty cars, all the way down to homeless, doing anything for a hit and disconnected from all who love me. The journey back from there, via a wonderful 12 step program, and building a relationship with God as I understand God, has led to an awesome 17 years of recovery and gratitude that even cancer has not taken away.

If life was fair, due to addiction, I would have been dead 17 years ago. Instead my life has become renewed, relationships repaired. I am a great Dad and I have even learned to be a good husband madly in love with my wife. I have learned it is better to be kind than to be right.

This part of my story, the recovery of my life, is the part that makes me cry. Gratitude tears. Gratitude for the grace that has given me 17 years of life beyond my expectations. This is the part of my story that depression has not been able to spoil. It is the part that cancer wants to take away giving me great sadness for what it seems I must lose - great sadness for the loss those in my life will feel. I can only imagine the grieving my wife will experience because I am so loved by her. My daughter - I know what it is like to lose my father when he was just 61.

There is sadness and fear, but even bigger is my hope for medical advancement. Bigger is my faith that all your prayers are effective. I know that God's will is being done as I write. Biggest of all, is my gratitude for what I have been given and for my desire to keep giving it away. Maybe writing this blog helps me do just that.
Bill