“David Foster's Kicking Kidney Cancer’s Arse”

The Not-So-Anal Man

    Heh, heh, heh. I am married. My wife, Sherry, is a good woman married to a not-so-anal man. Perhaps you know the kind. Wherever something is laid, placed, dropped or stuffed, well, what the hell, it is out of the rain.
    Sherry does not see things quite that way. She is more into not losing, dropping, stuffing and then forgetting about it. I learned the day after we were married the difference between a girl friend and a wife. Perhaps you know. For example, “that’s all right sweetheart” becomes “I’ve told you 50 times not to…”
    After more than 20 years we are up to a thousand or a million times. I suppose this is based on the cumulative regularity of the transgression. Today, for example, she comes home, roams around the house for a minute (I am sure on inspection), comes out on the porch where I am working and says, “I have told you a thousand times not to let that chair rub against the wall.” I, stupidly, told her I didn’t know it was rubbing against the wall. That’s when she placed her hands on her hips and gave the same look a hawk gives a rabbit. As I was pulling the chair away from the wall, she noticed I had dropped birdseed, and a copious amount of it, on the deck. “I have told a you million times not to litter the deck with bird seed. It is unsightly and probably not healthy.” I explained that the seeds would be eaten by the birds over the next few days…before I remembered that anything dropped or callously ignored only added to the unsightliness of the porch and, therefore, the birds would have to just go for themselves. I knew this when I let the seeds lie, but like many (most) husbands I assumed that this time she would not notice. The world of matrimony, I am afraid, is littered with the bruised psyches of men who truly believe this time the little lady will not notice.
    Husbands, at least this one, can be so stupid. This is not an opinion. Take me, for example: For the better part of two decades my loving bride has told me a million times to be sure to put the terlit seat down. For two decades I just haven’t gotten the concept. One day I asked her why, if a uniform position of the seat was so important, why didn’t she just leave it up? “More practical,” I suggested, “not to mention utilitarian.” Got that hawk eyeing rabbit again, but really, after 62 years of terlit seats up, don’t you think she would get it that this man is, well, not trainable?
    However, Sherry and her odd arithmetic are one of the ways I know I am getting better. When I came down with cancer, I could leave the seat up and nobody said a thing. She got a little more disciplined about it for a while, but then came the brain tumors and once again I was her poor boy. Few things in life better than being your wife’s poor boy. OK, nothing in life better than being your wife’s poor boy. My brow yearns for a stroke as I type.
    Six months later we are back at married, which means the cancer must not be doing much right now. Call it wife intuition. Hate to admit it, but feels pretty damn good. A man needs to be reminded, at least once a day, that he is an animal blessed to have a distaff side. Otherwise we would never have evolved past the college boy stage. Which, by the way, wasn’t so bad either.
    So I thought for a while to get Sherry one of those clicker counters for Mothers Day, the kind an umpire uses at a baseball game, but this one would click to one million. Men are just not very good at general estimates. We prefer the facts. So when I transgress she can look at her clicker and say, “I have told you 932,331 times not to do that.”  Click. Now that speaks with power.
    But I got her a dozen roses and gave her a hug instead. Even after sixty-plus years, a man may not learn much, but he does, occasionally, listen to his own female side.

Why No "Religion?"

    A couple of e-mails to this writer have asked why I do not mention religion as a therapy for cancer? Whoo. Now there is a tough subject. I have been hesitant to write this essay for a while, because it is, in the final analysis, the toughest question I have gotten.

    For many of us, prayer is the first step down the road to a good health. Yet for many others, the idea of prayer as a “therapy” is just too personal, to close to whom we are when we are most alone within ourselves.

    Every week, Sherry and I get postcards from churches around the United States telling us that somebody has put us on their prayer list. Just knowing so many people care so much is remarkably uplifting—and that in itself is an answer to our prayers. And I put that at the top of my personal list of reasons-why-I-am-not-dead. But that is me. The people who read this blog come from around the world. They have their own opinions of religion and prayer and I believe it could be counterproductive if I dwelled on the subject from the point of view of U.S. Christian.

    Do I pray? Every day I thank my Lord for the day I am being granted and ask for His guiding hand in the strategies I choose. I have not, ever, asked Him to save me from this disease. He provided that service for all us by giving us good minds, a reasonable basis of good health when we were born, and allowing us to live in an era when cancer is a war we can win and not a predestined death sentence. These are things to thank Him for. In my mind, once you get past that it is better to do for ourselves with the tools the God has given us.

    There are also so many concepts of God in our world. But in the end, as the story of man has shown many times, we are all speaking of the same Creator. We know--regardless of our intellectual arguments to the contrary--that man is somehow connected to the greater Universe in ways none of us can explain, but know are real. We should also know that our Creator has blessed us in countless ways.

    For example, there are billions of stars in the universe, but we were fortunate enough to find ourselves here. Think of the odds. We live on a planet of five billion people, but only a small fraction can even comprehend a medicine like Sutent. Think of the odds. Makes winning a state lottery look like small potatoes doesn’t it? What a blessing.

    Our Creator has already done so much that it seems a bit selfish to plead with him to do more. Therefore, I do not write about religion as a therapy. On the other hand, those circles of prayer that surround us, many by people we do not know, certainly strengthen our hand and to have those circles is a priceless gift.

But the Creator also gave us attitude. When we use our attitude positively then we are taking direct advantage of one of His blessings. In my mind, we are so blessed already that we should spend more time using the tools of life He has given us and less time asking for more.

Sutent: Let the Truce Begin

    I have been accused of being a bit anthropomorphic when it comes to the tumors (Butch, Spike, Killer and Jumbo) that continue to live their mutant lives behind my stomach. Yeah, well, how the hell do you fight a war against a nameless piece of meat or a machine?  No matter how much or little "consciousness" these buggers have, they are fully set upon killing their host, nice guy that he is. In waging my little war, I have sometimes felt my medicine allies were more ag'in me than with me. Nexavar about killed me with its foot and mouth syndrome, all the other drugs just wear me out and the first three months of Sutent were like a box of chocolates: you never knew what weird side effect you were going to get, but you could always count on fatigue (the foot and mouth syndrome stopped after two 28-day treatments).

    Today (and I literally mean, today), in the middle of my sixth Sutent round, I found that nothing was bothering me much. I got up this morning WANTING to cut the grass. And I did. The entire yard (including blowing and edging) without one (NOT ONE!) break for rest or water.

All through the two years I have been dealing with this disease, I have made it a point to cut my own grass. And as recently as two weeks ago it was a three hour chore. Cut a little, rest a lot, cut a little more. Today, well, I just cut it. Never, not once considered or even thought about stopping for any reason.

In my mind this is a terrific blow to the mutants. My body working as it should. Enjoying one of the greatest joys of life: good manual labor. And it may mean a new relationship with Sutent. No more feeling like crap. I have always felt if I could get a leg up on the side effects from the medicines my spirit would make it more difficult for the disease to fight the good work of the medicines. And today (I shall call it the "Battle for the Yard") I believe Sutent and I called joined forces  and then won an important battle with the invaders.

Too anthropomorphic? I don't care. I am not looking for exact concepts here. I am doing only what I think will help me (and you or your loved one) get well. Doing helps us get well. And doing with gusto helps us get well sooner. So I think.

"kidney cancer am I going to die"

      This question came from cyber space. It stared at me at the top of a Google search page. "kidney cancer am I going to die," as if the writer is addressing the tumors themselves. A plaintive cry, a pleading if you will.  You can almost feel (no, I can feel) the hurt, the fear, the what next and even the "why me?" I remember the day two-plus years ago the internist said I had 24 tumors, that it was "dark... and ominous." At that moment I asked the same question: Am I going to die? And he just repeated himself, "it is dark...and ominous."

    Good enough for me. Guess I am going to die. I sat on the back steps. Jeb came over and put his big head on my leg. The spring time was budding all around me. The azaleas were reaching full bloom, the camellias were still budding, new leaves were greening the hardwoods, second daughter was about to have her first baby, my youngest daughter was just about to enter her senior year at high school, Sherry and I, with the greatest rigors of child raising behind us, were finding new frontiers for a couple and..."it is dark... and ominous."

Damn!

I know very well how this fellow or lady feels.

Kidney cancer can kill you. Will kill 12,000 folks plus/minus this year. Could kill you in three weeks or thirty years. Then again, you are more likely (statistically) to find yourself cancer free or at least with the tumors under control, depending on how far the disease has advanced at diagnosis. One day, however, regardless of how well the cancer is controlled,  something else is going to kill you. I think one of the things cancer warriors might best face early in the game is that this is a deadly contest. And facing death at an early age (which is anytime under 90) is just awful. But to beat the disease, might be a good idea to understand it is best not to concern yourself with death, but life.

And it is amazing how much life we have in  us, regardless of what the experts say about our condition.  As an airplane  under power must lift off, a human being with reason to live, must live. And that will to live, that need to fly, can only come from within ourselves. Just the word cancer is spelled d-e-a-t-h in the minds of most Americans, but it is not always a death sentence. It is an opportunity to rediscover life, to learn the deeper meaning of taking a breath.

Yes, it was dark...and ominous. Yes, I too wondered, "am I going to die?" Then I decided I was not, at least at that moment. Every moment since has been a blessing. And I will treat every year going forward as a blessing as well. Dying? Be sure not to put it on your schedule...which too many people tend to do.

Kidney Cancer Warriors

A reader e-mailed me about my reference to kidney cancer "patients" as Warriors. That she had never heard that term before, but liked the idea of it. Where did it come from? As far as I know out of my little tumor-infested brain, as I have never seen the two ideas together at the same time either. Then again, there are no new ideas so I am sure there is really nothing new here.

Many years ago, I read a book titled "Company Aytch," the memoir of a "private soldier's" experience during the Civil War. When I got cancer and found myself surrounded by high sounding titles and hard to pronounce medical terms, I realized that I too was nothing but a private soldier in the great war against cancer.  Go here, sit there, do this, do that, etc., etc. And, like a private soldier when the higher ups were done with their poking and prodding, hurry up and waiting, I was consigned to my tent to deal alone with whatever aftermath I faced. Somehow I think this might sound a bit familiar to you.

From the get-go, I did not like the term "patient." It is passive and, frankly, a bit patronizing. It puts the person with the disease in a position of, well, being a private soldier. So, I decided, I would promote myself, from patient to soldier and then from soldier to warrior.

Of course, nobody dressed me up in armor and sent me against the fire breathing dragon, but I did psychologically do exactly that, determining that if this dragon killed ME it would damn sure know it had killed SOMEBODY and with no small contest. Well, it ain't killed me yet. When I started the game two years ago it was up on me by 24 tumors. Today there are five or six. Fire ain't so hot these days, is it buddy?

But like any war on terror (and is not cancer terror?) it takes a long time. Sometimes warriors feel they just can not take one more step. But they do. And then another. That is what makes us warriors. As for patients, those are people waiting for a meeting. Do not count me among them.

Kidney Cancer Paranoia

While at a business dinner this week a nice lady  asked me this question: "Does (the cancer) make you paranoid? Seems to me every little ache and pain would scare you to death."

Well, maybe I am just a scardy cat, but yes, I do get a little paranoid about the feelings in my body. Sometimes a lot scared. But like most paranoias, few of those little aches and pains have anything to do with cancer. Like right now. I have this mild discomfort in my left side. Never felt anything quite like it before. First came on while I was on that business trip. It seems to be coming from the area where they did the kidney surgery and if connected with my cancer at all is most likely some scar discomfort, about which I was warned. Could also be from walking too much the last three or four days? Could also be just an ache from getting older. Hell, could be anything. Regardless, when it popped up I thought for a moment "Oh, my goodness, what is that?" I contemplated calling the oncologist, but took an Ibuprophen instead. Voila! With in a few minutes the discomfort was gone. And the feeling is if you can get rid of such things with an aspirin (or whatever) you are probably OK, unless it goes on for a week or so.

Ditto for a little headaches. A person with a brain tumor can turn a simple allergy headache into a regular crisis.

For almost a year I had a lower back paint that I was sure was killing me. The result of some tumor the doctors could not see, regardless of what they said.  Turns out a physical therapist worked it out in a few minutes, no problems since.

But it is difficult, when you have cancer,  not to worry about things other folks would consider minor. This is, I believe, is especially true for kidney cancer since so many warriors had so few symptoms before it was discovered. Over the past two years I have had more than a few experiences with little things that, for a moment or a while, made me think things might be getting worse and each passed just fine. And the side effects of the medicines don't help much either.

So I have learned just be a little paranoid, but don't over do it. TOO MUCH PARANOIA CAN WRECK YOUR ATTITUDE. But a little might have helped me avoid this whole business just a few years ago. On the other hand I have learned that while we have cancer we are just as susceptible as anybody else to other diseases and dysfunctions. Good reason to keep an Internist close at hand.

However, if you find yourself at the oncologist complaining of some mystery pain and he finds nothing, don't be embarrassed. It is just part of the whole experience and like they say, just because you are paranoid it doesn't mean they aren't talking about you.

How Does Kidney Cancer Feel

Today I found this question on a Google search that led  someone to this blog: How Does Kidney Cancer Feel?

Odd, I thought. Is this from a student doing a term paper, a family member trying to get better into the head of a warrior fighting the disease or somebody who just discovered he or she has it and is trying to get a heads up on the struggle of the future.

At any rate, the question made me think of a reporter standing with a person in front of their storm-ruined home and asking: "So, how does this feel?" And the victim looks back at the reporter with a disgust that says "How the hell do you think this feels?"

Man, talk about a question too complicated for words. I have corresponded with many cancer patients, not just those with kidney cancer,and while the words  that come out of their mouths are generally predictable (scary, painful, tiring, etc.) those are only expressions between human beings. And for those who found their cancers soon enough and had them expunged, there is "relieved, blessed and better than ever."

Many people also speak of how they feel in terms of normal human reaction to crisis (shock, anger, resentment, acceptance, etc.). But do any of these answers say anything about how anybody feels? I am not so sure.

Two years into this and I feel weary. An acquaintance, fewer than six weeks into it, feels terrified. Another correspondent who is hoping just to live another three months ("if they are worth living") feels beyond the issue cancer and is more concerned about the end of the road ("I am not frightened about being dead, it is the dying that frightens me.").

Physically, kidney cancer doesn't feel like much of anything, unless it gets into the bone structure, especially the spine. The therapies for it, on the other hand, can make you feel worse than crap, but interestingly enough most warriors just learn to deal with that. If you don't learn to deal with it--and in as positive fashion as you can muster--then you are going to feel much worse.

Since kidney cancer is, in the norm, so slow to spread (or shrink) the tight knit fabric of sympathy (which is hugely important) will begin to fray. Fewer people ask how you are. The crisis, most folks believe, has past. One gentleman was shocked to learn, just this week, that I still have Stage Four cancer. At that point, kidney cancer feels, well, lonely.

Beyond the disease, there are other feelings. Like paying for treatment, keeping your job, supporting your family, planning for their welfare if you are gone. Oddly, for many warriors this is the worst part. The cancer is there. You either beat it or you don't. But the psychological collateral damage can bring on stresses like you have never experienced before, regardless of the happy face you put on everything else.

And believe me, I, from the point of view of one man, haven't scratched the surface here. Cancer is as individual as any other part of your life. But there is another side. Cancer can also help you feel fulfilled as you have never felt before. The world takes on a different look, your priorities can change and you can often learn from all the down sides there are many upsides. You have never had, nor will you have again, a better chance to get know yourself and great extent of your strengths.

But far as how does kidney cancer feel? Depends on you.

My Nurse Jeb

  During this writer's tenure with Advanced Renal Cell Carcinoma I have met, been looked after, remembered and loved by many many people and much of what good health I have today I attribute to them. However, if I had to name the one nurse that has done the most to keep my spirits up and most often seems to sense the deeper meanings of my feelings, it is Jeb. He knew I was sick before anybody else did. Before any doctor said anything; before I even admitted I felt all that bad. He would just come over and lay down on my feet, something he had never done before, lay his head on the floor and sigh in a way that can only be described as melancholy.

Jeb is a 13-year-old springer spaniel, named after Confederate cavalry general JEB Stuart. Black with big "puffy" white legs and paws, a magnificent black head with white stripe running between his eyes. He doesn't chase balls, hunt birds, play or do anything much other than nap and look absolutely gorgeous. He's the kind of house dog that every family wants: low maintenance. I didn't give old Jeb much thought for his first eleven years in the household. I had a super German Wirehaired Pointer (very high maintenance) with whom I hunted all of North America. When Jeb was 11 we got another hunting dog, Gracie, the impish Brittany you see on the opening page of the blog. Jeb's job was to see us off when when we hunting and welcome us home. Oh, he slept at the foot of the bed. End of job description.

Then I got the call that confirmed what Jeb already believed. The doctor said I had 24 tumors. It was dark...and ominous. Jeb sensed the surprise--then defeat--in my reaction. He came over, nosed my arm and then allowed me to drape it around him as he put his chin on my leg. Then I understood. Jeb already knew and he was there. When I clutched him close to me that afternoon that was the first hug of my cancer experience. And one of the best.

He has been my head nurse and helpmate ever since. He knows when things are not going well. There is no "seems to know" to it. He knows. When my appetite is bad (often), he too doesn't eat. When I am in bed from a bout of fatigue, he is on the floor right under me. He "guards" my space. Even Sherry can get a low growl or two if she approaches his "warrior" too quickly. Anytime I am on the back porch in my chair, he is in his chair, but unlike the days before cancer, he looks at me, as if he is on guard. The two times I have made emergency trips to the hospital, it was Jeb who held vigil on the foyer steps, head on paws, watching the door. Then he would go upstairs and nudge Sherry's hand. "Our old man's OK," she said he seemed to be saying. I bet he was. The reverse was also true. As I got better, Jeb let down his guard a bit. He would go into the kitchen for dinner without my escort and even into the back yard for a patrol of the property. But when things went south, no matter how insignificantly, Jeb became a full time nurse again, wet mouth, fluffy paws and all. If Jeb came to dinner without me, Sherry would say, she knew that I was fine. Nurse and counsilor Jeb.

When I got sick, Jeb was only 11. Today he is 13. He's got his own health problems, most stemming from old age. Because of my own issues, somehow I hadn't noticed, but dogs can be that way. Just fine on Monday, not so fine on Tuesday. Maybe even gone on Wednesday. The other morning he couldn't get out of bed until I coaxed him up. It frightened me. He cried quietly with pain, but finally came to his feet. Later we went to the vet. I was reminded looking at the arthritis in his lower back that this little dog that has done so much for me over the past two years, is now at a point where I have to look after him. I also know that his time is much more limited than mine and I think he knows it too.

On the way home I thought about his two years as my silent nurse, my supporter of all supporters, how sometmes you can feel his frustration by not being able to do more. Now he needs my help more than ever. But somehow I believe he is the one that feels let down that he can't do for me. What kind of nurse are you if you can't get out of bed, much less communicate to the old man what you are exactly thinking?

In two years I have grown a little older and lot less sick. During that same two years Jeb has become a geriatric and is not far from the end of his road.  I will walk with him all the way and when the day comes I will weep for no one more. If there has ever been a great cancer warrior, it has been him.

Nexavar/Sutent Delimma

E-mails and referrers for this blog tend to run 60% on which is better, Sutent or Nexavar? Since I have experienced both, I will say which ever one best keeps you alive. But I have to admit, at least for me, the side effects of Nexavar were just terrible and after three treatments I threw in the towel (were it not for Sutent I would have simply had to grin and bear it). I have now been on Sutent for four full regimens. Several people writing in have asked if Sutent has shrunk any of my tumors. No. Not as far as we can see. Nor have they grown. It has been a lot like sitting in a running car, the gear shift in neutral, revving the motor and not going anywhere. Even so, the SEs have not been fun, but nothing like Nexavar. I am still on "vacation" from Sutent, but expect to go back on it tomorrow.

I got a note from a reader who found that Sutent might have been affecting her thyroid and that, in turn, was creating her extreme fatigue. Interesting thought, though nothing in the literature I have read mentions the thyroid. But those of us on either  Sutent or Nexavar must remember these are brand new drugs and there is still a world of information the medical folks do not have. Not a bad idea, if you are in deep fatigue, to ask your doc about the thyroid.

The lady who wrote me about the thyroid also mentioned she is now going on Nexavar in a hope of speeding up the results (positively). She is in a wheel chair and therefore may not suffer what, for me, were the debilitating side affects of the feet that after three months were not (so I concluded) going away--ever. But Nexavar does have some psychological advantages: Four capsules a day as opposed to one, the primary difference. Despite the pain (or perhaps because of it) you may just feel like you are kicking more cancer arse and sometimes that goes a long way to getting the job done. A car in neutral has little value. On the other hand, no one has told me they are having more success with Nexavar than with Sutent. Would love to hear from someone who has experienced improvement from Nexavar.

New ARCC warriors are generally in a real frenzy to get on with getting cured and that certainly  is a natural desire. But after two years (last month) I have learned that for most ARCC warriors this is a long affair with a normally slow growing cancer. When they found the tumors in my brain last fall I freaked out pretty good. Six months ago, they treated them with the gamma knife. I was hoping by now they would be gone, but not so. But the fact there are not (knock on wood) any new ones and these are not growing, I take as God's favor.

As for Nexavar over Sutent (or vice versa)...thank the Lord for both regardless of the SEs. Without them I (and perhaps you) would have no use for any automobile, in neutral or not.