Monday, March 27, 2006

Musings of a Passenger on a Roller Coaster

I don't know how to relate this day's events other than the stream of consciousness that has plagued me all day. This posting will probably provide the clearest look into the heart of a cancer survivor struggling with his disease. It is neither optimistic nor pessimistic. It is a window into my mind this day, like so many days. It is raw and unapologetic.

We were told early on that this would be a roller coaster ride, why do I continually forget that? There is a lesson here, not to go up when the news is good, no matter how tempting, and not to go down when the news is bad. But I am human after all.

First the context: Feeling good, run into a friend last night at the Avalanche hockey game whom I haven't seen since "the diagnosis". He has heard. He cannot believe how good I look. I tell him the new drug is working.

This morning I trot off to the clinic; decline Susan's invitation to accompany me as "I will not be seeing Rifkin." Check in and get ready for the stick in the arm for the blood draw, the antinausea meds, and the velcade. Nurse says, "I see you're seeing Rifkin today."

"No, just getting the velcade as far as I know. But if he wants to stop in, I'll always be glad to talk with him." Nurse: "no, you are on his schedule so he will be seeing you."

Everything OK on the exam, but then Rifkin lays on me that I will not continue on velcade for another 3 months unless my numbers are down 25% from baseline. That translates, according to him, to a need to get the IGGs to 2100. He says my baseline is 2800--what your IGGs were when we started. "What's up with that, you told me I was at 3220 and dropped to 2800." We argue about my baseline, he punts the issue by saying, "well you haven't acheived the 25% drop even if you started at 3200." I'm not happy. and I have enough energy to get angry as opposed to sad. I start to argue, displaying signs of my old self, but I'm no match for the doctor, not on chemo, not on his turf. Whatever I sputter is unpersuasive. Besides, I don't even know why I'm arguing. Frustration, no doubt. But, no resolution of the issue, as I still have this last cycle to see where my numbers will end up. Do I dare hope for a 500 number drop on this cycle?

If I don't get to the magic 25% drop in numbers, I go on another clinical trial. THis time with Revlimid, a new drug that came out about the time velcade was approved a year ago. Rifkin is all excited about this drug; just like he was excited about velcade. He just returned from a conference last week singing the praises of Revlimid; "it's had some amazing results." Same words I heard 2 months ago about velcade. He leaves. I steam, I sulk. I can't think. I am frustrated not only because I can't think, but I can't think quickly anymore. What's the point. My brain is fried with chemo, emotion, frustration, anger. I used to be so proud of my great memory. Nothing could escape my steel trap mind. The steel trap has been cut into a sieve. Nothing stays in anymore.

Questions drown my brain, but he is already out the door and down the hall.No one ever told me of "qualifying criteria" for continued participation. I'm reminded of what I read only last night:

"The principle is simple and at first glance makes a certain sort of sense. In the case of complicated, possibly fatal and emotionally charged illness, never tell the patient more than he is likely to find out for himself, and only ever give the best-case scenario."

This from the book written by a multiple myeloma survivor of 7 years who refused all medical treatment and chemotherapy and went natural with herbs, vitamins, breathing exercises. "Living Proof" "A Medical Mutiny" by Micheal Gearin-Tosh. I understand this. So what if Rifkin had told me at the outset I need to achieve a 25% drop or no second three month cycle? I would have been fretting, just like I am now--only I would have started 2 months ago. I really believe oncologists learn to give dribs and drabs, only as needed. But truly out of compassion for their patients, as they know from experience there is only so much we can handle and then we shut down, or go into a permanent downward spiral.

Why am I reading this book, when I have chosen the opposite route? Is the herbal routine a fallback? Will I have the courage to go herbal when/if chemo fails me? Will it be too late? All I want is hope, give me good news, tell me I am making progress against this insidious cancer.

Instead, Rifkin tells me, "we've stabilized your disease." This does nothing for me. Stability is not our goal.

The Revlimid trial is called a "compassionate use" study. What is that? Sounds more like charity than science. I long for a scientifically established certain outcome. Not in this life. Not for anyone.

In the minutes before Rifkin walked in I was reading the buddhist monk, Nhich Nhat Hanh's book, "Peace is Every Step", where he says, "Hope is for the future. It cannot help us discover joy, peace, or enlightenment in the present moment....Hope can create an obstacle for you, and if you dwell in the energy of hope, you will not bring yourself back entirely into the present moment." What am I to think? I want to hope. Hope springs eternal. Am I creating obstacles to my enjoying my life by hoping for a respite from this nastiness? No doubt. Seems to be the human condition.

I no longer want to be a cancer survivor, the "brave, courageous" person facing this nasty disease. I never wanted to be "an example" of how to cope with such news. I want to slip back into my anonymous life. There is no "hope" of that, unfortunately. No matter. The journey has already begun and must be completed.

Another poem crosses my mind; this one from a book my brother, Tom, sent me, "A Whole New Life" by Reynolds Price. An encouraging, uplifting, inspiration memoir of Reynolds' cancer survival story. His poem, entitled, "The Dream of Refusal" ends with this: "I will walk all night. I will not die of cancer. Nothing will make me dance in that dark."

Yes, that would describe the state of my mind and my spirit. I refuse to acknowledge the darkness and most assuredly will not "go there" in my thoughts, despite daily temptations.

So, I get my velcade today and another shot on Thursday, then the blood draw a week later to see where my IGGs are. Meeting with Rifkin on APril 14th for the blood test results and the plan of action. Two weeks off the velcade. Is that good news? Hardly seems like it anymore. THe news of no bone marrow biopsy also fails to lift my spirits. Rifkin explained that if one doesn't qualify for continued participation then, the drug is no longer given free by the manufacturer. While he could continue me with it, it would be in a non FDA approved application (off label) and thus, my insurance company might (MOST PROBABLY) fight paying for it on the basis that it is experimental. At $6,000 a week, that expense would chew me up in no time.

The roller coast has reached its zenith and is plummeting. How can one sit in an examining room and have the same sensation in one's stomach as a plummeting roller coaster? I want to throw up.

I call Susan from the parking lot, give her the abbreviated version of events and go to work. I cannot go home with my thoughts. Escape to my work--an old habit perhaps, but effective. Before I know it, it's 5 o'clock, time to go home. How time flies when...

Catherine and Susan have conspired to present me with a fabulous meal and the face of optimism. "Dad, you're entitled to your two days." Catherine says, referring to what we have all learned is the time I need to get over this kind of news. Too much bad news, too many two day recovery periods. Well, one day down, one to go. Tonight during dinner I was in the present. I was enjoying Susan and Catherine and their love for me. In this household Susan's heritage has taught us: food is love.

Cousine Eileen just dropped in, in the middle of the last sentence, with homemade chocolate chip cookies, just for me. No kidding. Food is love.

I tell myself, stay in the present, just stay in the light. Do not dance in the dark. Goodnight my friends. I am fine. I love you all. Dan

8 comments:

Dorothy said...

Dan, Catherine is right you are entitled to two days. For right now just enjoy the wonderful food that Susan has made with love. Love you The Seals

sigunjoe said...

Dear Dan,

Keep this blog for your future book -- it is one of the most precious, honest, courageous and touching ones you have ever written. We are with you with all our thoughts, prayers and love. Sigun.

Arlene said...

Hi,

I haven't been blogging much at all lately, but I have been reading everyday as usual.

It was 7:30 today when I got to work and got on line, and now here it is 8:15 and I am finally able to stop staring at the screen and just type.

Sigun says it all, and I will buy that book, that is, if you promise to autograph it for me.

Love you all,

Arlene

Ingrid said...

OK, I read the blog, after being told by Susan, that Dan wrote on the blog yesterday. That sounded really strange, because, as we bloggers know, Dan's next blog was supposed to be in about two weeks, or 10 days, but for sure not yesterday. So that got me worried, Susan's tears even more, and Dan, hmm, I thought he just had again one of those difficult days.

So I went over to my Pc and read this post of Dan yesterday.

Well, and opposed to Dorothy, Sigun and Arlene, who all wrote a short nice post I have a real whole lot to say and nothing about sceneries going on over in Europ like Joe when he writes his most beautiful posts, but a real whole lot about what I think you Dan are going through and have still infront of you:
Therefore:
1) First of all: Welcome to the world of chronicle diseases.
Here you are, that IS where you are now, now and forever. Sorry, there is no healing, BUT welcome to the like you call it: ups and downs of a chronicle disease.
2) Welcome to the burocrazy of a chronicle disease. Now you are facing it. Yes, there are cures out there, I guess probably for everything already, let's face it, we walk around the moon and should really believe that down here on earth there are still diseases that cannot be cured. Come on, NO, I do not believe it.
BUT it is all about money. Money makes the world go around!!! Wasn't that a great song? But how true. Now as you know, I am dealing with my sweet diabetes for more than 25 years, and you read on the anniversary, how depressed I was about it, together with the victory feeling that I made it so far with no amputation, no dialysis and still not being blind.
Do you know how I made it? .... checking my blood sugar over and over again, every day, every week every month. How often? Here comes the point, and here comes the connection to the burocrazy of the chronicle disease and the money about it: Checking my blood sugar as much as 10 times a day!
My doctor's support: Nothing, less than nothing, all I got was criticism (however you write/spell that) They told me for 25 years not to do more thatn 3 controlls a day in Italy and not more than 7 a day in Austria.
Who would pay for that? Insurance pays for 3 controlls a day. Each controll is 1,28 Euro, what about the other 7 a day, that I needed??? I paid them out of my pocket, or better first my mother did and now Byron does. Do you want to multiply that by 25 years, how much money, and no insurance company would pay for it?

So back to YOU !!! Yes, you have to deal now with quitting Velcade if the numbers do not come down more, yes, you might need to start with a new drug sometimes soon.
Yes, you were told Velcade is the best, like before the stem cell surgery was the best, and you had no result from the stem cell surgery and not enough result from the Velcade.
BUT, here you go with the next try.
(Do you want to know how many insulines I changed in 25 years ??? I do not even remember, ok)
The bottom line is: You have simply another drug to try.
The next bottom line is: You still have even 2, not only 1 brother who can help out.
And who knows how many other resources Dr. Rifkin has.
So, please, stop feeling so bad. There is in my opinion no reason to feel bed. You have one of the best Doctors taking care of you, who professionally does not tell you all he knows, for his good reasons, but he has always a new idea, a new try, a new attempt.
In the meanwhile, the only thing you should do, other than trying herbs or not, is: DO NOT LET YOURSELF DOWN!!!
That, and only that is the best cancer drug you can have, you can get. It is all inside of YOU.

You're sick reading from us bloggers, how great, brave and corragious you are?
No man, go and read it again, because only who believes and hopes like you do and who is always positive like I got to know you, will get God's (or if you prefer Buddah's) blessing to make it. But that is the share that YOU have to pay, to give, to continuo to be as strong as you have been this whole past year.
Believe it or not, but YOU ARE THE MAN. You are great, and yes yet you're also human, and therefore, believe you me, you have all my support in feeling blue and depressed and left without courage.
As long, as it does not become a continuos situation. Cry the hell out of your body every once in a while, ask for compassion, I know we chronicle diseasers need that every once in a while, but then, you stand up again, and show the world that you are stronger than those cells inside of you, who try to challange you. YOU are the one who wins this war.
And even if you think that you've lost battle one with the stem cell surgery and now battle two with the Velcade, hey the war is not over yet.

I still see you walking around with Sigun and Joe in Paris and with me in Siena, BUT YOU have to see it too. Switch on the light, brighten up the room, walk out in your little cute garden in the back, see the sun and all the beautiful things you will enjoy in the future, in the long future I mean, not only the next few years.
See yourself walking your most beautiful girls down the aisle, carrying their babies and and and.
You still have a long way to go man, and we will have so much fun in the future. Believe me.

With all my LOVE for you and Susan,
Ingrid

Sorry for this long post, but I rang your bell and you're not home, so I had to write it.

sigunjoe said...

Dear Dan,

Your latest blog, “Musings of a Passenger on a Roller Coaster,” seems to mark a new breakthrough in your understanding of illness and suffering. It does for mine. The writing is sublime, direct, flinchless, clear as sunlight. Your struggle seems to be moving you through a forest of essential questions. How do I read what doctors say? Do I have to translate or just leave it alone? Is their bag of medications incomplete despite the science they have on their side? Can I ever control the emotional roller coaster? Should I try? Was that nurse telling me to be a whiner, or what? And, most striking of all for me, is hope the wrong place to be right now?
When we talked the other day, I tried, unsuccessfully, to explain to you why I was so impressed by a sermon given on Sunday by a retired Episcopal priest from Washington. I realized later that the problem was that he hit me with a BIG IDEA, so big that all I was able to do at the time was recognize its importance. I have been thinking about it ever since and will be doing so, I now think, for the rest of my life.
The point I am wading toward is that his big idea and your discussion of the nature of hope are part of the same thing. He talked about how the power of prayer, grace and “all the rest of it” is a “HYBRID POWER”, that is, one that is both God’s and ours. He called this a “formula for faithfulness, which teaches us that we cannot control the world, but we can define ourselves within it,” doing what is right and always exercising our part of the hybrid power, which puts our hand in God’s. I took this to mean that what people ordinarily do is to pray, say, and wait for God to act, like putting a coin in an automatic vending machine. The follow-through is supposed to be all God’s work. We remain passive.
It doesn’t work that way, this priest was saying. We build our faithfulness as we exercise spiritually, whatever form that spiritual exercise may take. (This is my analysis, and may be wrong.) Faithfulness brings us what hope cannot.
When you quoted the Buddhist monk, a clang of connection sounded in my head. “Hope is for the future. It cannot help us discover joy, peace, or enlightenment in the present moment.” This seems profound. We think of hope, as you say, springing eternal like a happily babbling brook. But in fact hope has within it a mighty tension, because we in the present lack that for which we hope. The greater the desire, the greater the tension. The priest at one point said that we may not get what we hope for. But we can achieve joy, peace and enlightenment by working toward a fuller and fuller sense of our belief, which is at the very foundation of our being.
This is so hard for most of us because we are dealing with the ineffable. I was reading a review of Karen Armstrong’s new book, “The Great Transformation” about the Axial thinkers who started the great religions long before Christ. The reviewer wrote: “The crucial aspect of religion that emerges from Armstrong’s account of Axialism is that it lives with rather than attempting to control or, perversely, to know the unknowable. The Axial God is paradoxical—beyond all our categories—and apophatic: he engenders silence.”
The review ends with a great Zen saying, which you may already know:
“Before enlightenment, chop wood, carry water; after enlightenment, chop wood, carry water.”
What a world apart that insight is from our own sense of enlightenment, with its implication of volcanic change.
Your faithful student,
Joe

Howie said...

Fuzz,

I ran across this the other day and thought it was appropriate after reading your latest post.


To laugh is to risk appearing a fool,
To weep is to risk appearing sentimental
To reach out to another is to risk involvement,
To expose feelings is to risk exposing your true self
To place your ideas and dreams before a crowd is to risk their loss
To love is to risk not being loved in return,
To hope is to risk despair,
To try is to risk to failure.
But risks must be taken because the greatest hazard in life is to risk nothing.
The person who risks nothing, does nothing, has nothing is nothing.
He may avoid suffering and sorrow,
But he cannot learn, feel, change, grow or live.
Chained by his servitude he is a slave who has forfeited all freedom.
Only a person who risks is free.
The pessimist complains about the wind;
The optimist expects it to change;
And the realist adjusts the sails.
-William Arthur Ward, "To Risk"

All hands on deck.. We're all with you on this voyage. Time to adjust the sails.

Howie

Patty Nelms said...

I was motionless long after reading your latest entry and those of the other bloggers. I wish I could write like Joe because my thoughts and feelings are just begging to be communicated, but alas I'm without the sufficient words to express myself. All I can say is you are so loved and supported! This is a most amazing journey we're all on and you've taught me so much. I'm on deck with the rest and stand ready for whatever's next.
Love and light,
P

Dorothy said...

Dan, Susan, Catherine, and Julia. After all the readings I agree with everyone but especially Howie and Patty we are all in this with you. Just a time to refocus and see where the energy is now placed. Count on us all to help get you through this whole situation. Love The Seals