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

Hope Will Never Trump Commitment

    "Joanie" wrote six sentences:
    "I'm 33 years old and had renal cell carcinoma. I had a radical nephrectomy on April 13th of this year. I'm one of those rare cases. I'm still in pain. I'm also the Mother of a ten year old son and a severely autistic 6 year old daughter. I hope I live to 40."
    Damn, that one hurts. I found myself soaking it up in reverse. "Severely autistic 6 year old." Mother of a boy at the very height of his childhood.. "I am still in pain." "Thirty three years old." Then back to the end: "I hope to live to 40."
    That's a lifetime of pain and disappointment for an eighty year old, much less a young woman on the cusp of the rest of her life. In her posting, she did not ask for advice, but just threw those six sentences on the world wide web.
    "I hope I live to 40."
    Somehow I do not think this is so much about Kidney Cancer as about a woman in pain summarizing a very difficult ten years. There is tragedy in cancer, absolutely, and most of us who have it consider it the tragedy of our lives. But considering Joanie's age (I have two children older than her), her family circumstances and the continuing pain from her nephrectomy and, well, it makes me feel like a whiner, even when I am not whining.
    On the other hand, I would like for Joanie to buck up. If the nephrectomy got all of the cancer, already she has had a major victory. I would certainly take it. If she could look just a little deeper within herself, find the Warrior one more time, I think she could take this crisis to victory as well. But there are few things more difficult than to find yourself in the trenches for six years with a severely autistic child only to turn and face yet another seemingly unbeatable issue.
    But the last line of her note is, while pleading, also full of strength: "I hope I live to 40." It seems she is OK with her world, wants it to continue, but somehow feels life has just not dealt her that card.
    Joanie, your pain from the surgery will, most likely, go away, but it can take a year (mine did). Some of this pain may be coming from your attitude. And while "hope" is good, it does not trump commitment. Never has, never will. It does not take audacity to hope. It takes audacity to find the Joan d' Arc within you to find the strength to beat the cancer and visualize a long and productive future...not to mention the satisfaction of raising your children to be the best they can be. That is all any of us can do.
    Easy for me to say? Yeah. Easy. But it has not been so easy to commit myself to so many other crises, including ARCC.  And you might find it  good to remember, no matter how lonely this feels, there are millions of people who share your pain, not merely feel it.

   

A Very Amazing Lady

She beat me to it. Simple as that. Two weeks or so ago I thought, "Hey, Dave, you ought to do something on Jacki Donaldson." But I didn't. Stupid me. Sunday I get this e-mail from Jacki Donaldson wanting to write in her blog about my site. I wrote her back that I would be glad to discuss it. Monday I went to the blog for its daily look over and saw a new referrer: The Cancer Blog. I tapped on the mouse and suddenly I was looking at Gracie and me on Jacki's blog. Then I read her comments. OK, I admit it, as they say in the UK, I got all chuffed up. Slap me, I must be dreaming.

Oh, who is Jacki Donaldson? She may be the most amazing blogger in the cancer fight. The information on her site is, well, amazing. Her research? Ditto. Her written "voice?" It just makes you feel good. Feel a little down? Take a stroll over to Jacki's blog and get yourself a nice lift.

Jacki is a a breast cancer survivor. By more than nine years, if memory serves. But serving the cancer community continues to be her top priority. Her blog is not about kidney cancer per se, but it doesn't really matter. This lady has has something for everybody.

OK, I'll 'fess up. When I thought about writing about Jacki I got cold feet, like Charlie Brown did when it came to the "little red-haired girl." She has this really up to speed blog and me, well, I am just a poor essayist doing his best to do what he can. Aw shucks.

Take a look for yourself at

www.thecancerblog.com/2007

You may decide amazing just doesn't sum it all up.

Sutent: Round Seven

Or maybe round eight. I am easily confused. Anyway, last week I began a new round, 50 mg of this now famous little pill. During the two weeks off, I had some days I really did not feel well. Nothing exciting, just a low grade feeling bad. So I was not happy to face the medicine cabinet Monday a week ago. If feel bad now, I deduced, I will feel worse after this little guy kicks in.

Haven't felt better in a month, thank you. No real fatigue, appetite back a bit (not ready to eat a horse or anything, but I did get down most of a taco salad last night and that made my bride happy and when she is happy I am ecstatic). Energy is surprisingly up. For example, this morning I woofed down one of those instant breakfasts (I do love the strawberry flavor) and drifted out to to the porch to read the paper, do some work and forgot to take my medicine. Suddenly it was after 11 and I never thought of taking my mid-morning nap. Taken all together--though forgetting to take the cancer medicine was not a good move--may also be an indicator I am doing pretty well overall, or at least better.

Going to drive out in the country this afternoon to work on a farm book I am photographing. Normally just the idea of picking up the camera case is a chore. Today, I can't wait to get out of here, two dogs in the back seat, all of us excited about a big adventure. OK, at least an adventure.

Boy, do I remember the early days on Sutent. Hurting feet, terrible nausea, unforgiving fatigue. Today all that seems to have never happened. I am not ready to sing "Oh Happy Days," but I am singing "Oh Happy Day," you just can't hear it. If you could hear it you would ask me to shut up. When I sing the birds leave the feeder and the dogs go under the house. It is truly that bad.

Goes to show, in my mind, that when it comes to Sutent there are far worse things to deal with, especially when you get over the "hump." And I don't think I am an exception to the rule. Now that I have stopped singing a Carolina wren is singing in the hickory tree. Wish you could hear that. Nothing makes me feel better than to hear a happy bird sing, especially when I am feeling pretty darn good myself.

"May kill me, but it ain't gonna beat me."

Man, what an attitude. Worth writing again: "May kill me, but it ain't gonna beat me." Comes from Bart Mitchell, a blog reader who lives in New York City. He thanks much of his childhood for his better than positive attitude. To wit: "I have a part of my brain that views life from the perspective of my 8 year-old self who believes if things get really bad I'll be able to summon an inpenetrable force field  to repel cancer cells."  I certainly understand the idea. When I was a kid, I assumed like all children that I had spooks both under the bed and in the neighborhood, not to mention at school. Mainly guys I was scared of, or as we said back then "real scared." The kind of fear that kept me up at night after some bully says "Gonna get you tomorrow, Foster."

I lived the miserable life of a wimp until I was about eight. Then one day, "Jerry,"--in my quaking little mind a major killer of wimps--told me he was going to whip me after school, "just because I can." That was it. I was done. I didn't wait until after school (surprised the hell out of me, too). I just stood up in the lunch room and smacked him hard enough to dang near break my fist (that hurt worse than any fight). Jerry stumbled back with blood running down one eye, while the other was wide open with fright. I got two whippings anyway (dad and the principal; they weren't much into "time out" and suing the school back in those days). Turns out Jerry was prescient, but he didn't whip anybody that day, least of all me. I have been in a few other adolescent fist fights. But, far as I can remember, I never lost another minute's sleep over a bully.

Like Bart, I decided then and there nothing could whip me, at least not the Jerry's of the world.

With that confidence I became a much happier little guy and that allowed the imp in me to come out. Like Bart, it remains one of my good friends, much like an invisible pet. Sixty years later it can still make me make mischief, which makes my wife say things like "sometimes you act like a child." (Did I mention she says that  often?)

Thank God. Once I found my strength at the expense of the right fist and Jerry's eye I also found that I didn't have to be quite so serious about anything as I did before that fateful day. Girls? Ask 'em out. Financial problems? Whip 'em. Personal issues? Put on a smile and solve 'em (so hard to be angry with a sixty year old man with a glimmer of mischief in his eye). Spooks under the bed? Who cares?  Cancer? It may be real, may be in our bodies and not under the bed, but you know, my inner kid is 100% confident we can whip it as well. No crying, no whining, just get up out of the chair and knock it down. In fact, I relish the thought.

That is most likely where my idea of Warrior comes from. I am not fighting this war to lose it, nor is Bart. To whip us it has to get past the kid first. Easier said than done.

That doesn't mean that cancer might not kill us. That is Bart's point. Do your will, Cancer, have your way, but best bring a few band aids because you may take our lives, but you are not going to beat us any more than Jerry beat me.

That may sound simplistic, but I have a feeling most of us Warriors feel much the same way. It is a contradiction, but carries great truth. Thanks, Bart. Now I am going to go inside and do something to bug my daughter. All this walking down memory lane puts me in the mood to be a child, poor child.

Do We Need the Media Confusion?

It is a morning radio show. Two  celebrities chatting, taking a few phone calls, helping folks wake up. Across North America there are hundreds of shows just like it. Normally,  I listen with a passive ear, but this morning the hosts got into cancer and that got my attention. One host said that a "doctor" told him  that most people die of cancer or heart disease. The best option for most of us, he advised,  is to eat more bacon. Then the two hosts went into a deeper, yet emotional, conversation about how cancer is the worst scourge to ever visit the earth, how terrible it is, how it would be better to just have a heart attack and be gone (as if all heart warriors just pass on). Or at least that was the gist of it.

And this is 2007....250 years after the age of Enlightenment. Amazing. It is just that kind of hip-shooting from lay people that horrify so many people about "cancer." That's exactly the kind of attitude that keeps so many men from check-ups: They would rather have it and not know about it. It is also what sends panicked caregivers and Warriors to the Internet looking for the cure. It is exactly the media attitude that breeds so many maudlin national and television "specials" and news reports on the subject. And why so many people are ready to give up the fight the day they are diagnosed. That in itself is a tragedy of public ignorance.

Of course some cancers are aggressive and can kill in a manner of weeks or months, depending on when they are diagnosed. Most others, however, are much less aggressive and can take years to reach a stage of any kind of debilitation, much less whack you. And these well meaning media folks talk about cancer as if it were one disease, rather than a family of diseases that has more than 300 members, and an equal number of manifestations.

A friend of mine died suddenly last Friday of a massive heart attack. Just didn't get out of bed. Later that day he had planned a golf lesson for a couple of his buddies. I wonder, would he be happier to be gone unexpectedly from a heart attack or have inactive Stage 4 kidney cancer and lived another six or seven years? Hell, six or seven months? I am having a hard time thinking the former, regardless of the toll the medicines take on cancer Warriors.

Cancer is  terrible...and it is in far too many cases a fatal disease. Good chance it is, one day, going to kill me. But it is also in many cases very manageable giving cancer Warriors time many heart Warriors can only wish for. Sure, for many of us the time is going to come when our bodies  just can't fight it anymore, but that time could be a long time coming. But that's just part of life with cancer...and heart disease.

I think the radio celebrities, considering their wide market here, upset a lot of people this morning. Unwittingly, yes. Unnecessarily, too.

I am also afraid it is part of  an unintended national misinformation epidemic.

"Mr. Foster, are you really sick?"

E-mail to this blog is more than interesting. Sometimes it is mind-boggling. I get this e-mail: "Mr. Foster, are you really sick? I read your blog and you don't sound sick. I can barely walk from Sutent. This is not as easy as you make it sound."

H'mmm, perhaps for two years I have been fooling myself.  I called my oncologist. "Am I sick?"

He seemed very puzzled. "What do you mean are you sick?"

"Do I really have cancer?"

"Of course you do." Now he seemed very put out.

"Advanced kidney cancer? Stage Four?"

"Of course, though I am wondering if you have lost your mind."

"I lost that years ago and the brain mets aren't helping and there's this fellow who thinks I'm just some kind of cyber freak, so I just thought I would call you, be sure."

Long sigh. "Leave me alone."

So there you go. According to the best opinion in Augusta, Georgia, I do in fact have kidney cancer, stage four, which means, regardless of how I feel, I am sick. To remind me, they have me take a regimen of drugs, including 50 mg of Sutent and steroids and dilantin, and blood pressure meds, and some kind of high powered nausea medicine...just so I won't call the doc and ask him if I am sick.

Do I ever act sick? Now that is a loaded question. Sometimes I act sick just to get a little sympathy. I put on my puppy dog face and say things to Sherry like, "Oh, I don't feel well." She walks over, touches my face (the way my mother once did) and says, "I'm sorry." Hey, I said a little sympathy.

Sometimes I get some serious nausea, mainly dry heaves. That qualifies as sick. And other times I am so fatigued I can barely hold my head up. That may just qualify as an excuse to take another nap, but according to the big medical book in the living room, mix fatigue with cancer and you are, well, sick. Mix fatigue with a glass of red wine and you get a really, really, really good nap. I like to think of basic sickness the way one may think of a wad of clay. Work it enough and after a while you have something.

I get pretty sick from worry  before I go in for an MRI and CT scan. My too often glass-mostly-empty attitide tells me this time they are going to find something that says I am more than sick, that I am  deathly ill. At the moment, far as I know,  I am not deathly ill, but if that happens the  gentleman who asks if I am sick will be the first to know. I hate keeping blog readers in suspense.

But, this minute, I do not feel sick. Nor do I wish to feel sick. The way I avoid feeling sick, I think, is with lots of drug induced naps and a Warrior's attitude. But truth be told, I am sick...and tired of being sick.

Man, do I wish neither he nor I were sick.

But I would act sick occasionally anyway. I have become addicted to a little sympathy.

"Kiss my brow, darling, and make it all feel better."

"Cimarron" on the Physical Value of Hugs

Cimarron is an ARCC  patient (she does not use the Warrior analogy, but we get along fine anyway) who sent me this  e-mail on the deeper therapeutic value of hugs. I think we all might find this not only interesting, but helpful:

"Your blog is the first I have read. My sister sent the link because I have had metastasized kidney cancer since July 2004. I am assuming that this is the route to getting a comment on your  page.

Hugs are not simply a nice form of greeting. The human torso has seven energy centers called chakras. During a hug we     align our energy centers together. If the hugger is conveying a gesture of     love and concern, his/her intent impells this energy from his/her energy centers into the one receiving. The one receiving the energy has taken in the life force of Love. When we comment that some is a good hugger, we are  acknowledging that we perceive the power of his/her life force entering our own energy fields. Our energy center is charged up and enables healing to occur. If two people consciously are intent on this energy exchange, think about how they are touching and think about how long to hold the hug so that energy is passed, a hug is powerful medicine indeed.    

It is a shame that in this culture, touch is  almost always assumed to be sexual or to become sexual. This fear of   sex, distracts from the simple possiblities of a loving hug.

Touching foreheads together, where there is an energy center can also be a powerful experience of 'putting our heads together.'

And finally, for those unable to touch,  extended relaxed and gentle eye contact (staring into one another's left eye) is a wonderful way to exchange energy. The eye is the window to the soul and it is the soul that transmits love and life force.   

These exercises are age-old, from Tantric meditation that has its roots in India." 

Cimmaron is also an artist. That's the second painting (of a series) about her cancer experience at the top of the post.

It Don't Work Quite Like That, Eh?

A very nice lady in Canada gently slapped me around a bit about some of yesterday's post about negotiating the health care system. She said that in Canada talking with your Oncologist (or other physician) about the deeper questions of ARCC is not always possible. That trying to get any information can be blood-vessel burstingly frustrating. According to her (and more than a few other e-mails to the blog) the health care system there isn't as flexible or as welcoming as it is the U.S. (also echoed by a few U.K. readers).

And that in turn made me think: Foster, what a provincial twit you are! Here you are thinking about how things work on your block, but this blog goes around the world. Many, if not most Warriors, when taken from that point of view, just do not have the services we do. And I should keep that in mind.

And I will try to do a better job of keeping that in perspective in the future. However, the United States health care system, for all its expense and discrimination (which is not nearly as great as some would have you think) is  the one with which I have personal experience. Therefore, when I suggest a new warrior get their early information from their physician or an RCC specific website, I am only dealing from my own experience. And that experience is from the point of view of most warriors in the U.S of A.

To that end, perhaps a suggestion: The renal cell cancer organisations (that "s" is my salute to the internationality of it all) in other countries direct some of their research and literature on how to best negotiate their system. From what I have read that is a very important issue. If some readers are telling the unvarnished truth of their situations, it may be one of their most important issues, if the not the most important.

During my career, I have dealt with bureaucrats from many different cultures. And the more bureaucratic a health care system is, the more difficult it is to negotiate it because too often bureaucracy breeds apathy--not only toward the patient, but the whole system. Warriors every where should have good information on how best to make their system work for them, especially when it comes to a fairly uncommon disease like ARCC.

If I were a warrior in one of these systems I would demand help from the cancer societies to get that job done.  There seems to be a very good organisation in the U.K called the James Whale Fund. Things are not much, if any better, there, but warriors seem to be mobilizing to get the job done.

Ignorance Ain't Bliss

More than once in this blog I have said that I am not entirely sure it is wise for new Warriors to bury themselves in the message boards looking for either support or information. Why? Because many of the people on the boards, while they mean well, can too often give a distorted picture of their cancer experience, offer advice that is just not grounded in generally accepted medical knowledge, or take on the role of physician and give warriors answers that may or may not be on target for the warrior's specific situation.

For example, a warrior wants to know the long term prospects of their cancer. As I wrote in "You Have X to Live," if most physicians can't answer that question, you can bet a cyberspace writer writing from their unique experience can't. Keep searching and you can get more and more confused. After a while, a message shows up here (or elsewhere) with a frantic "there is so much information. I just don't know what to do." That means this warrior, if I am reading correctly, has a very serious case of cancer "information overload." And often that overload is compounded by what friends and relatives have to say, much of that based on some knowledge about somebody they knew who had cancer (and most likely not RCC).

As I read some of these e-mails I have a recurring question: Why not just ask your doctor? There are four stages of kidney cancer. There are several different varieties within those four stages. There is your personal health history to be considered, not to mention your age. By the time you are diagnosed, your physician knows your status better than anybody else in the world and can speak to the specifics of it. And since he works for you, be sure to ask every question you can think of. More importantly, if you have read something on the web that contradicts his information or mentions something he has not discussed with you, then ask him or her specifically about that information. If you are going to browse anyway keep a notepad nearby so when you come across something that contradicts what your doctor said, make a note, call him up and ask him that question.

The idea here is not so much to stay completely away from the message boards, but to keep the information you get there in perspective.

It is true, some physicians are not experts on RCC, especially ARCC, and too often some think they are. If you are not sure, ask your current physician (hopefully an Oncologist), how much experience he or she does have with the disease, how many cases have they treated, how many of those cases fit the Stage of the disease you have.  Instead of reading the boards looking for information, call the oncologists in your area and find one that might have more experience. If your insurance carrier will not let you change, then suggest to your oncologist that he or she consult with one of the other oncologists. Don't be embarrassed, we are talking about your life. Most physicians will be happy comply. (I have heard they will often go to bat for you with the insurance provider.)

A friend of mine printed out an ARCC fact page from a reputable medical website,  took it to his doctor's office, laid it on the conference table and said, "Now, explain all of this to me, point by point." Wish I had thought of that.

The message board can get a little habit forming, but I believe a new Warrior might best consider a different approach  to insure he or she understands at least the basics before catching that  browsing bug. Once they do, they can much more easily separate the good stuff from the well, you know.

And solid information can diminish a lot of the stress Warriors go through trying to figure it out. It is a very complicated business and every case is unique in one way or the other. And all of us were brand new to the subject the day we were diagnosed. I suggest you learn as much as you can...but proceed carefully.

I avoided the boards for more than a year after I was diagnosed and am glad I did. Even today, they can give me a needless fright and I am much further down the road of education than 99% of new warriors.

So Sherry Vented a Bit

It drives Sherry nuts. I mean, seriously, this is a serious subject. I literally don't know hour to hour if I am going to eat the next meal and just the thought of some foods puts me off. This is a real conundrum. Friday, Sherry fixed a beautiful salad for dinner, but I just didn't have the appetite for more than two bites; Saturday she whipped up stewed okra and tomatoes (plus sliced tomatoes, onions and cukes,  rice and corn-on-the-cob). When she suggested it earlier in the day, I thought it was a great idea. A magnificent summer time Southern dinner. But when I sat down to dine, I only took a few small bites and I was done. No gusto at all. I just didn't want the food. And she, in turn, was, well, pissed off.

While both she and I know there is little, if anything, I can do about my appetite, except take another drug to make it artificially better, it has become a cancer wedge neither of us can help. Sherry wants to have a good healthy dinner for the family, she wants me to help eat it (for health as well as social reasons). But  two or three times a week I just ain't up to it. Worse, I have no idea which days that will happen. And you can imagine how it goes down when I say, "Hey, that would be great," and then not eat it, not even try.  Most of the time this has nothing to do with nausea--I just am not hungry. But it is just as frustrating to me. I know the value of Sherry (and all other caregivers), how much love and support she (and they) has put into my (other Warrior's) recovery. But even a saint gets a little exasperated once in a while. And the longer the cancer issues go on, the more exasperated they can get for her. And that, in turn, affects the Warrior's attitude and not for the better.

Curses.

But we Warriors might remember that cancer tries our caregivers in ways we don't necessarily think about. We know they care, we know they are worried and, the longer it all goes on, especially if the Warrior's cancer  is in something of  a healthy balance (nothing growing; nothing shrinking; still on serious drugs) the more wearying it can all be. Further, an evening meal should be a time of normalcy, when we should all have a moment or two outside the cloying web of cancer. Therefore, sometimes that frustration is vocalized. It is not selfishness when they become frustrated, even when they show that frustration. They are human beings with a ton of pressure. And like you, they just wish this business was over--and by over I mean the two of you enjoying a plate of stewed okra and tomatoes and a real conversation.

Last night Sherry vented a bit to me and a lot to her friend Nancy. Today I was hungry and we had a very nice lunch topped off with a super conversation.  Tonight hamburgers and I going to make it a point to eat. And Sherry has offered a compromise, which is certainly reasonable (if not obvious): If I don't feel like eating, then she will make me a cold plate. And if I do feel like eating, welcome to the table (rather than being admonished for not eating). Drink some tea and let's talk about the day. Just talking to my happy lady is worth the finest meal served anywhere in the world. Especially when we don't talk about the side effects of cancer and how they sometimes ruin my appetite. We shall see how this one works out. But smooth dinners ahead for the foreseeable future.

I hope.

Curses.

(Note: the burgers were good and I ate half that dinner. But I had to work at it. And I don't like having to work at eating, nor do I like seeing the disappointment in both Sherry's and Alex's faces. Any  suggestions?)