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

Grounding

I got two interesting e-mails this morning. The first from a very upset lady who was just beside herself with last month's diagnosis of her husband's ARCC. She thanked me for this blog, said it helped her find an anchor through these difficult times. The other was from a Warrior  with another point of view. He suggested (as another lady did earlier this month) that my blog is way too "inspirational." That what Warriors want to know is how to find the best treatments, drugs, alternative cures and the like. That he was "very disappointed" when he read this blog.

Now, David Foster is a reasonably smart fellow, even he thinks so, but he is not now and will never be a medical expert. Not  on threat of death would he dispense speculative medical advice of any sort on the Internet. (Disclaimer: Sutent, Nexavar and Avastin are drugs with which I have a very intimate experience.) There is, frankly, too much speculative advice  on the message boards. When this blog began it was intended to do only one thing: help ARCC Warriors (or any cancer Warrior) ground themselves in the day-to-day challenges they face based on the challenges of Stage Four cancer. Challenges I have worked with for more than two years.

An old friend told me that the most important words a person can speak when helping someone else with a problem is "my experience has been..." Experience has an eloquence and an authority that is unmatched in the world of human communication. Of course, there are many Warriors who have much more experience than I do. Therefore, it is wise to only refer to my experience rather than speculate.

When people come to this blog, I hope they linger a while. I hope they take something positive from it. That it helps their own point of view during these times of almost unbearable crisis. And maybe a little more strength. In my mind that can be as important--or more important--than one more  suggestion for what drugs to take. I'll leave that to the physicians.

In the introduction to the blog I write that cancer is not about reporting on it, but living  it. As I have to live it. As thousands more who come here live with it. And living it positively and realisitically can be the best medicine of all.

Kidney Cancer Physician Resource

Sherry reminded me last night about a super physician website (www.bestdoctors.com). It lists the best doctors around the country as chosen by their PEERS, from oncolgists to neonatal. Folks a little confused about exactly what to do about choosing the "right" physician may find this very helpful. For information only.

"You have X to Live"

Bob and I were doing some reminiscing today. Mainly about the day I was diagnosed with ARCC. He asked me how long my oncologist gave me to live. He remembered it as eight months. Not exactly true. Dr. Shlaer gave the best answer I think there is for people in our situation: "This is a serious cancer, but we can treat it." Worked for me, so I joined the team.

Now, you might argue, the good doctor was being less than honest. Guess you could, but let's say he had said, "well, you have two dozen tumors from your kidney to your stomach to your lungs. Best guess is maybe eight or ten months. You know, we don't have any cancer specific drugs for kidney cancer." Now if he had said that I would hate to think of the pschological damage. Instead of Warrior, you might have just called me Prisoner of War (which common sense would say was the unvarnished truth. Some websites said I should be a goner in five months or less. The surgeon who took out my kidney tried to talk me out of the surgery, suggesting Interlukin and I might get another eight months).  But the day I was diagnosed it was just "this is serious and we can treat it." In my opinion, that is all a physician needs to say, even if the Warrior is not only staring into death's door, but deciding how he or she likes the furniture.

No human being in this world has the magical ability to read the future. Period. And if a physician decides to offer a reading from the crystal ball, he may have just gone from healer to part of the problem. Certainly, a doctor should not tell an outright lie ("you are going to be fine" or whatever), but why suck even more vitality from a Warrior who just got kicked in the groin learning he has cancer.

Some people do demand to know. Right that minute. What is the long-term prognosis? On the first real consultation, they are normally in an emotional panic. I sure as hell was. But if they are adults, they know kidney cancer is a life or death contest. What does adding a deadline  add to their long term prognosis? In my opinion, nothing. If  they have a few days to think it all over, their Warrior side will normally rise to the fore.

So what to do? I really don't know. Some doctors just cannot hold themselves back. Of course, you can always get a second opinion, but after the "you have X to live" has been let out of the cage that is somewhat anti climatic.

Therefore, perhaps the caregiver should speak with the physician before the interview and explain to him or her that you are ready for bad news, but please, even if the Warrior asks, avoid the deadline.

"So what do I say?' the doc asks.

"This is serious but we can treat it."

Nothing changes. The warrior is no sicker. The  doctor has not, in most cases, told a lie and the Warrior leaves that office a lot more ready to fight.

Obviously, all of this is on a case by case basis, but you pay the doctor. He works for you. Work with him to avoid unnecessary death sentences. I am so glad I did.

For the Love of Hugs

My old friend Bob came over last week. He hugged me when he came into the house and he me hugged when he left. My young friend Carl came over a day earlier. More hugs (well, two). Briently, the triage tech from heaven itself, gives hugs and puts hearts on my name band when in I go in for checkups. Out in Montana my friend Diane does some of the most healing hugs in the whole wide world. And no hug is better than the ones from Sherry and Alex. And Jeb's hugs (he lays his head heavily against my leg for no particular reason) are super.

If there is anything this experience with cancer has taught me, it is the power of the hug. And I mean power. No matter who is doing the hugging it is a real sharing of human love, energy and promise. Back when my aunts squeezed my cheek too hard (shaking it as if they wanted to rip it off and take it home) and hugged me until I couldn't breath, I decided, at least until I reached puberty, I didn't need anymore hugs. After marriage, hugs became sort of perfunctory. You just did them, like the social kiss on the cheek of a female acquaintance at a cocktail party. But once I got sick, whoa! Hugs took a whole different meaning.

When another human being wraps his or her arms around you and gives a squeeze, you feel the transfer of care and hope as no words can ever express. For men, hugs are done quickly, with seemingly little thought, broken in moments, but the message is still there: I am with you, buddy. I am thinking of you. This is going to work out. Here, take some of my strength. And you have.

A lady's hug is a little different. They are soft, yet firm. They tend to linger for a moment after the hug is over. When you are sick and you get a hug from a woman, you may feel a curative strength fill your body, not to mention a security I can only describe as a mother's love, no matter who the lady might be.

A few weeks ago I got a question from a lady that I answered on this blog. It was something like we don't need emotional advice, we need to know how to afford our medicines. True, but not the whole story.  One of our strongest medicines--and it is a powerful one--is cheap as dirt. A good hug. A hug can make you feel wanted when you feel lonely. It can help temporarily erase the pressure of our financial challenges. It lets us know we are loved and our loved ones know that we love them. Hugs may not only be the oldest, they might be the very nexus of human emotional communication. In my mind, you can not get enough of them. Unless you are eight and here comes Aunt Helen.

Oh For the Little Miracles

Yeah, we had a little miracle today at the Foster household. No, had nothing to do with healing my cancer or walking on water or even putting down the terlit seat. Had to do with a little female house finch that found herself unhappily on the screen porch, fluttering here to there in some panic to find a way out. This is not unusual, but if it happens on a weekend when we are away or when Gracie is on patrol, well, it doesn't turn out well for the bird (Gracie does make a snack of them. Owww, I didn't need to tell that).

This morning a finch flew in and went into the panic routine. Over the years I have become pretty good at catching them and with as much gentleness as I can muster.  After locking away a suddenly blood thirsty Gracie, I cornered the little lady with a broom, collected her in palm and sent her back to her world.

Whoa, you say. That happens thousands of times a day across America. You might be kind, you might be thoughtful and the bird might be stupid, but hardly a miracle.

I beg to differ. A miracle could be defined as an amazing and positive conclusion to an otherwise fatal situation. Had we been out of town or had I allowed Gracie to chase the bird, the bird would most likely have found its way to bird heaven. It had no defenses (except the unlikely chance of finding its way off the porch on its own). Therefore, as far as the bird was concerned (if they have any concerns), its capture and release were, in fact, a miracle.

As a cancer patient I have been on the other end of that scenario. I lucked into a great oncologist, the kind who never says never, even when never might not be such a bad prognosis; he has prescribed the right drugs (which were not available two years ago); I was in fairly good overall health to begin with; my wife would not allow me to wallow in self pity (or any pity for that matter; when I had a pity consultation, I did it alone). It only took only a minute for the little bird to get the benefit of its miracle. Mine has taken two years. But a miracle is a miracle.

I get  a lot of e-mail at this blog from Warriors who celebrate their miracles as well as those who believe they have been cheek-slapped by the devil himself. I have never felt that way. Not once. Not even when I was told the cancer was "dark...and ominous."

Maybe I have just saved too many otherwise doomed little birds from the maw of Gracie, but  I have learned that miracles come in small packages and from often overlooked situations, like helping a little bird to safety or seeing a flower flourishing from a crack in the concrete. Therefore, the miracle is not being saved long term from cancer, but being allowed to live one more healthy day.

The devil has not cheek-slapped anybody. Instead, those of us who do not see the little miracles around us that carry such grand, positive and uplifting messages for our plights might just be cheek-slapping ourselves.

Dang Old, Dang Old Depression

Many of the readers who come to this blog are caregivers with a bigger issue than just good old cancer. Depression or, perhaps,  suspected depression. Not only for their Warrior, but themselves as well. (Disclaimer: I have never been "depressed." But there have been weeks that I have felt  very mentally low and if it weren't for the cancer, well, one might easily say I was depressed.) However, as they say in Marriage Encounter, feelings are neither good nor bad, they are just feelings. If a warrior is full of worry and woe, lackadaisical about every thing, determined that his or her cancer is "out to get him," that even when the medical folks give him good news, well they are just being nice, then even a lay person might lay it at the feet of depression. But not without some reasonable professional consultation, please.

However, it is good to keep in mind that many of a Warrior's moods come from the side effects of the medicines. Nexavar and Sutent might be saving your life (not to mention the heavy duty stuff like Interlukin), but Lordy there are days that when you are on the stuff  being, well, dead does not sound like such a bad option. Those side effects also poison a Warrior's view of the whole world and not just his or her experience with cancer. For example, the hurting feet from these two meds are beyond misery. Some people can't even walk. You can be upbeat about that for a day or so, but after a month?...just shoot  me. (Not really, but you wonder in the quick of your soul how long you can go on with this.) Know the feeling. Been there myself, but not at the moment as Sutent and I have reached a truce.

Beyond the physical symptoms, don't forget our universal experience with cancer's reputation, especially if we are over 50. People got it, took awful therapies for it and then they died. Of course that is not always true, but when kidney cancer, which is suppose to go away on our gee-whiz medicines, metastasizes to your brain, lungs, liver or some other vital organ, not being a little (or a lot) blue is difficult, if not reasonable. If a person is shooting at you you can shoot back. With cancer you just take it and take it and take it. Bummer.

Therefore, depression at the worst and moodiness at the best should be expected. We, each of us, is fighting a war, a potentially deadly one, not cheer leading a football game. Once I said something to Sherry about how I feel and she said I shouldn't feel that way, that I should feel blah, blah, blah. I became very angry. Despite her good intentions, who the hell was she to tell me how I feel? Besides I was just looking for a little sympathy. On the other hand, she will not let me mope. Yin and yang.

In my opinion, every Warrior should be on some form of anti-depressant. Friends and loved ones might consider giving them the space to have a crappy day. Too much hovering only feeds anger and that, in turn... well,you get the picture. If the Warrior is not working, but just hanging around being "sick,"  it feeds bad moods like gasoline feeds a fire. This one may be the toughest challenge: Getting him or her up and doing something that takes their minds, to some degree, off the cancer. I know, that is much easier said than done. One good way we found early on was board games. There are a number of cool video games available for free on the web and few things are more helpful than a "Sunday drive," just for change the scenery. One acquaintance of mine has taken up feeding his back yard birds and watching them for hours at a time. He says from the day he spotted his first vireo high in a hardwood and identified it, his hobby has kept him mind too busy to worry all the time about cancer.

As for therapy, be careful going there, not to say it can't be helpful. Be sure, perhaps in consultation with your  oncologist, that therapy might be helpful. For many people therapy is another word for mental illness. And your cancer Warrior, even if he or she refuses therapy, might then think they have even bigger problems.

Finally (and this may sound self-defeating for a fellow who writes a blog) Warriors with emotional issues might just stay away from cancer chat rooms. They can be very depressing, especially late at night when you have nothing better to do than sit in front of a computer looking for cancer comfort.

There is no subject touchier than this one. But when you use the  "D" word, be careful of creating even greater issues. Oh, if you think it is getting out of hand, call one of your favorite oncology nurses. They have seen it all and normally more than happy to help. I think they are the most wonderful and uplifting people in the world, wherever in the world they are.

Nexavar/Sutent: More on paying for this

Before I got into the work day, I checked the sites of several major hospitals around the country. I found that each offers a program for financial aid. However, you will most likely NOT find these services listed on the home page. Instead, you have to search within the site. I also learned that many institutions consider their affiliate physicians part of their overall team and, therefore, medicines, etc. from most of those physicians qualify for financial assistance.

For example, your doctor is affiliated with hospital "A." While you might have never been in that hospital for direct services, that does not necessarily disqualify you from assistance, including medicines.

Second, several of you have asked "What does Sutent (Nexavar) cost?" My treatments, I am sure negotiated with  the insurance company, run about $8,000 per month. Whew! There is some discussion that, as the medicines become more popular this price may drop, but I do not suggest you count on it.

Now you know as much as I do.

Sutent/Nexavar: "How do you pay for this?"

Over the weekend I got an e-mail from a lady who has no insurance, is scared to death and asked the most important question to her (and many others in similar straights): How do I pay for this (cancer meds)?

I wrote her a personal e-mail, but will share the highlights with anyone else who has such issues. First, few if any seriously ill patients do without their medicines, whether they can afford them or not. You are not going to languish with cancer while people with insurance laugh their way to the oncologist's office. However, in most cases, the health care folks and pharma people, sooner or later, want their money, so here are some tips I got from some financial help folks here in Augusta. And remember, one of the most depressing side effects of cancer is paying for it, even the deductibles, but this is not the time to duck and run. Like a real Warrior you should face this crisis just as you do the one playing out in your body

Your physician is the best place to begin. His office should  know of programs and have a closer ear to the volunteer cancer organizations in your community. (Caveat: Notice I said their office, like the office manager or general adminstrator. Many physicians don't have a clue about financial aid.) Many oncologists do have an office manager who is trained in this kind of financial counseling. Ask for a private consultation. And do not forget to discuss this with the nurses. You might find them your best well of meaningful information.

If there is branch of the American Cancer Society near you, you should
call and ask what programs they might know are available, especially within
your community. Be sure to ask about clinical trials. If you are accepted for
one, treatment while on the trial is normally free. Also be sure to
inquire with the Kidney Cancer Society (just search Kidney Cancer Society/financial aid/counseling).

You might also contact the financial counselors at the major cancer
hospitals: Sloan-Kettering, M.D. Anderson, etc. You can find a fairly
exhaustive list on the Internet. To most hospitals it makes no
difference if you are their warrior, but if they can't help any other way and you are
close enough to use them as your primary care provider, you might agree to
move on over.

Below I have listed a number of top notch sites that have extensive
lists of financial providers from private foundations to government programs.
Social Security, depending on your age, amount contributed, etc. might very
well be able to help. Very much worth the call.

If you are on an oral chemo (sutent, nexavar, whatever), the
pharmaceutical company may also have financial aid or at least help
you with a more affordable price. Your pharmacist will have the contact
numbers. Oh, and the folks at the pharmas are not the money-grubbing three-headed monsters you may have read about in the media. If they can help you out, experience shows they will.

As I understand it, a company with a large pool of insured workers may
allow you onto their group policy, regardless of a pre-existing condition. You might therefore, consider changing employers, regardless of how you feel about your current employer.

You might ask your current employer if they can help you with your
treatments. Many large companies have programs for just this sort of thing, even if
you don't have insurance. But remember, most don't. Still worth the
conversation. Many HR people have great resources to help you.

This is going to be a paper wade, but if you do not have insurance you
have little other choice. It is also no time to be proud. My wife and I are
looking forward to retirement, but if I find myself without insurance
these medicines can eat up our liquid nest egg in less than two years. If that happens I
will beg in the streets.

I will continue to look into this, but this information should set you
on your way. And don't forget, financial aid is not one-stop shopping. Work
as many programs as you can. If you feel your oncologist is not giving you
at least a fair hearing and with your best interest in mind--FIRE HIM and
get somebody who will.

Last but certainly not least, regardless of how you feel or how invulnerable you think you are, arrogance over assumed good health (regardless of how much you work out, drink juices etc.)  has reached the end of its road by the time you reach 50. If you don't have insurance now, get it if you can, even it means stretching the family budget more than you like. Insurance is expensive, but cancer (or any other debilitating disease) can not only kill you, but take every asset you have.

Good luck.

http://usgovinfo.about.com/library/weekly/aa061800a.htm

http://www.cancer.gov/Templates/doc.aspx?viewid=E2A4DCDC-236F-4117-B26C-1FF9B1D9846

http://www.robertsreview.com/additional_financial_help.html

http://www.cancersurvivors.org/Support/financial/financia.htm

------ End of Forwarded Message

Last Day (of 28) of Sutent

A happy camper is any kid with wet clothing, cold food and a big, wide, happy  smile. (That is not a happy camper on the right, but instead a Longhorn cow I photographed last week. The one behind her is just jealous.) Anyway, back to happy campers. Most of the time I am not a kid,(my wife will argue that), but I am certainly happy, at least for the next two weeks. Last night I approached the lavatory, opened the Sutent bottle, put a little water in the glass and--Whamo!--down went my last Sutent pill of this treatment. Now I get 14 days off and if I get to feeling any better than I do today, well, I just might cancel this whole cancer thing and find another crisis.

Getting here, I admit, has not been easy. And I am not completely sure if I will stay in this feel-good situation. Sutent has fooled me a time or two. OK, four or five or ten times or two, but hey, a cancer Warrior takes his or her R&R where they can get it. I can't forget that my higher spirits of the last three or so weeks might have something to do with the mild steroids I take twice a day, but do I really care? Feeling good, for any reason, is just a treat that, for the first time in my life, I am truly taking note of.

Remember before cancer? You get something (sniffle, toothache, whatever) and you knew no matter how badly you felt it was just a temporary thing, maybe even a reason to play hooky for a day or two. Not with cancer. When you have a feel good day with cancer you just have to grab the day and, regardless of all the other baggage , smile, smile, smile.

Some people feel good for a day and they only worry about how fleeting that feeling might be. Hooey. Those of us in Stage Four (did I mention that Stage Five is in the afterlife),  learn there is some truth in living one day at a time. Slow down and enjoy the days you feel good. Save up your attitude strength to kick arse when you don't feel so good.

Anyway, this evening I am going down to a plantation and photograph Longhorn cattle  at sundown. Stop at a fastfood joint for dinner. Puff my pipe while Jeb snoozes on the way home and do nothing else than feel blessed for this wonderful day I have earned.

Earned? Damn right. You earn every good day. Comes from being a cancer Warrior. Your fight is paying off. Maybe just one good day, but what the hell, at this point in time, a good day can be as good, or even better, than a great year before you got cancer.