Wednesday, December 28, 2005

Tough News But We Continue Onward

We saw Dr. Rifkin today and went through the results from the bone marrow biopsy and the bone scan. The transplant is categorized as causing a minimal response. In fact, the degree of cancer/plasma cells in my bone marrow is around 30%, which is what it was in early October, in late August, and early August. We started in late March at 65% so there has been some progress, albeit all prior to August. In essence, the transplant didn't work. So, I will be starting with a new drug: velcade. This chemo regime is part of a clinical trial for which Dr. Rifkin is the principal investigator. I will start in mid January. I receive it through a shot given IV every 1st, 4th, 7th and 11th day--which consitutues one cycle. then a week off. I will go through 4 cycles, which will take about 3 months. The potential side effects include neuropathy (tingling and shooting pains in feet, hands, legs), nausea (which can be dealt with with medication) and low platelets and/or white cells, which they can also deal with. They will monitor my response every 2 weeks. I will also continue with the zometa, and received an IV of that today. As a result of going on the velcade, however, I will have to postpone the prostate surgery as the velcade would intefere with the healing from that surgery. So, I got another shot of the lupron today (hormone). So far, that has been effective in holding back the spread or growth of the prostate cancer.

Dr. Rifkin also said that if my response to velcade is good, then we are probably looking at another transplant in 6 months or so. This time he would like to use stem cells from one of my siblings. So, Mike, Tom and Kathy, you can expect to receive in the next month or so a testing kit or directions or something like that, to ask you to get your blood tested to see if any of you are a match for me. This is called a mini allogeneic transplant and although not as risky as a transplant from a stranger it is still much harder on me than the autologous. But, so be it, if that is what is necessary. I'll just have to work out a little more at the health club before the transplant to get in better shape.

There is a small bit of good news in all this. First, the skeletal survey (bone scan) does not show any further lesions or invasion of the bone by the myeloma as compared to the survey done in August. That survey showed two small lesions in each humerus, which were of no concern to Rifkin. I also learned today that, although I have a genetic abnormality that is at least partially the cause of this myeloma, it is not an abnormality of chromosome 13. An abnormality in that chromosome results in a very poor prognosis. I have known about this for some time, but quite frankly have not wanted to ask my doctor, for fear of the news. But today I asked and got the right answer.

So, I have some work left to do. Susan is quite understandably upset, but doing OK. The girls are also upset but their positivity will return shortly I am sure. (they are both curled up napping on the sofa next to me--wanting to stay close I suspect--this is so hard on them; they are quite understandbly scared, but want so desparately to be strong and supportive for me. As I have said before, this is one of the most painful parts of this--seeing their Dad struggle with this disease) We all know that this is a long road, and sometimes our hopes blur that fact. It has been difficult and I think we would all like a break from the underlying stress of it all, but that does not seem to be in the offing at this point. But, I am still feeling fairly well and hope that I can continue with my health club regime and just being able to go about my life as best I can. Stick with us and someday we will look back, shake our heads at the ordeal we've been through, and tip a glass of wine to our endurance, stamina, perseverance, friendship, love and support. I love you all, and I have confidence that this new year will bring unexpected blessings to us all. Dan


Arlene said...


Been waiting patiently all day for news. I am not usually at a loss for words. However, at this moment I am.

Except - we will continue to pray (even harder), for better news with the next phase of the battle.

I will call Susan tomorrow, as I am sure that she, as well as you and the girls, are pretty exhausted.

Love you all!


nina said...

hey dan, i'm sorry about the report, kind of what you've been dreading (what we all have been dreading) but as you so positively note, the cancer hasn't spread and you don't have new lesions. so you ARE fighting this thing off. it's just a bit more tenacious than hoped, but i'll bet that you'te more tenacious than it! it is so exhausting to continue to fight, but that's your challenge. retreat into yourself and gather what strength you can. i'll send you all the healing energy i can dan. gary and i are with you all the way. love nina

Brother Ted said...

Yes, like a trek across the mountains I hoped that we would see the vast green valley open below us, instead there are some more mountains. The green lush valley is just a few more mountains away and each and every one of us will continue on this path with you, Susan and the girls. I wish I could help carry your load. Don't hesitate to call on me and others. Love and peace Dan, Susan, Catherine and Julia. Love Ted

Dorothy said...

Good evening Dan. As everyone else we have been waiting for your news. Dan we all will be in this for you, Susan, Catherine and Julia. We will stay even more positive and light more candles. Greg and I have just the bottle of wine that we will toast when there is better news. Keep close to your family the strength you get from each other will sustain you. Love Greg, Dorothy, and Rebecca

sigunjoe said...

Dear Dan,

I was so proud of you when Suz told me a little while ago that you had gone to the gym. That is the spirit! I am sure you can guess what the biggest wish of all of your bloggers will be for the New Year, right?! As I have said so often, we are with you all the way. Bises to all, Sigun.

Brother Ted said...

The new drug that Dan will be receiving, Velcade, is a very interesting drug. For those of you who might be interested in it's healing mechanisim here is a good site to visit. Be sure to watch the video clip, it is very informative. Copy the address below and paste it into your search engine. I am always so impressed with Dan's doctor, he is right there with the newest and best treatments.

Pam and John said...

We are with you in thought and in prayer. Remember you are loved. Pam and John

Brett said...

I'm glad you included the information about chromosome 13. And as you have said in other parts of this post, some good can still come out of this. I'm sure you've already realized that if just one of your siblings' transplants works than you could continue to have a long and healthy life as a survivor.

Forget waiting to tip a glass of wine for sometime down the road, I'm doing it now! You deserve to tip your own glass, and when all this is over and we're all looking back, we're going to tip a nebechenezzer in your honor, so get ready!

I'll see you in few days, my friend.

Patty Nelms said...

Dan, I'm not very good at saying the right things. I can tell you how my heart feels though . . . sad but very hopeful, extremely helpless because I want to fix it for you and I don't want to see you in any more pain or discomfort. Most of all my heart overflows with gratitude for our friendship and I'll be there in any possible way that I can to help you. Both Mike and I will continue to pray for you. As I've said before, you have quite a tribe here to help you along the way. Press On!
Love Patty

Shawn and Jaike said...

Hi ya Dan,
You're right, not the best news. Just means more fighting ahead but, I have never known you to shy away from a good fight. Reading this blog just sometimes hits you right in the gut, but we do read it and Shawn sends her prayers while my religiously undecided self just tries to conjure up good vibrations and send them out. We are both doing that now. Our Christmas was fine, girls were here and still are driving us crazy, making us laugh. We love you.

sigunjoe said...

Dear Dan,

You are giving us all some monumental lessons in life. Your latest news brings the lesson that blind faith is just as damaging as total despair. Your abiding strength of spirit seems to come from keeping a balance between hope and all those medical facts that can at times feel so cold and impersonal.
Sigun told me about your discussion with Susan and the girls about prayer vs. science. I believe in both, God and Darwin. There is a quote from an article about Einstein's legacy that is something to think about. The speaker is a physicist from the University of Vienna named Anton Zellinger. He said that "the world is not as real as we think... The discovery that individual events are irreducibly random is probably one of the most significant findings in the 20th century. I suggest that this randomness of the individual event is the strongest indication we have of a reality 'out there' existing independently of us."
Ronald Reagan famously said "Trust but verify." So we can say, have faith in medical science but keep on praying. Love, Joe

Arlene said...


I thought of this poem today, a copy of which has been in my Bible since our former pastor, Roy Olsen, preached on it in about 1983 and I asked him to type a copy that I could keep.

Since then, I have read it many times, when thumbing through the scriptures. It is as strong today as it was then.


By Joaquin Miller

BEHIND him lay the gray Azores,
Behind the Gates of Hercules;
Before him not the ghost of
Before him only shoreless seas.

The good mate said: “Now must we pray,
For lo! the very stars are gone.
Brave Admiral, speak, what shall I say?”
“Why, say, ‘Sail on! sail on! and on!’”

“My men grow mutinous day by day;
My men grow ghastly wan and weak.”
The stout mate thought of home; a spray
Of salt wave washed his swarthy cheek.

“What shall I say, brave Admiral, say,
If we sight naught but seas at dawn?”
“Why, you shall say at break of day,
‘Sail on! sail on! sail on! and on!’”

They sailed and sailed, as winds might blow,
Until at last the blanched mate said:
“Why, now not even God would know
Should I and all my men fall dead.

These very winds forget their way,
For God from these dread seas is gone.
Now speak, brave Admiral, speak and say”—
He said: “Sail on! sail on! and on!”

They sailed. They sailed. Then spake the mate:
“This mad sea shows his teeth to-night.
He curls his lip, he lies in wait,
With lifted teeth, as if to bite!

Brave Admiral, say but one good word:
What shall we do when hope is gone?”
The words leapt like a leaping sword:
“Sail on! sail on! sail on! and on!”

Then, pale and worn, he kept his deck,
And peered through darkness. Ah, that night. Of all dark nights! And then a speck —

A light! A light! At last a light!
It grew, a starlit flag unfurled!
It grew to be Time’s burst of dawn.
He gained a world; he gave that world

Its grandest lesson: “On! sail on!”


Remember - If the mad sea shows his teeth tonight, Sail On! to the speck, the light. We all pray every day.

Love you!

sigunjoe said...

Dear Dan,

Happy New Year to you and yours. May this New Year finally bring you release and relief from this terrible illness.

I was making this wish for you as Joe and I were standing in the middle of the Pont Alexandre last night when midnight struck and the Eiffel Tower started twinkling and scintillating. It took me back six years when the six of us rushed out of our apt just before midnight to run up to Avenue D'Iena where we would have a good view of the Tour Eiffel which was going to twinkle all over for the first time. And do you remember how we tried to walk on the Champs-Elysees, the six of us, and Julia was still quite small -- how the crowd was so dense, and how we were scared to be crushsed by it, and we made for the first street to the right to get back to rue Lincoln? Those are happy memories. When you are all better, I would like the six of us to spend the holidays together once more in Paris. We know it so much better now and can show you so many new (rather 'old') things!

Yesterday afternoon we heard the Choir of the Kremlin Museum at the Cathedral. 8 women and 8 men had us entranced by their voices. The soprano, a young red-head, had the most amazing voice. I would love for her to sing Miserere once, one of my favorite pieces of music. The choir did a rendition of Silent Night which I will never forget. It really took you out of yourself; being in the beautiful cathedral helped as well!

Then we went home for a quick dinner of more foie gras (remember the kilo of foie gras I got while you were here, and how everybody got sick and tired of eating it? I never tire of it!!) and champagne, plus a chicken sandwich on a good baguette with cranberry sauce. And off we were again to listen to Georges Moustaki. I wish you could go to one of those concerts with us; Moustaki would make a convert out of you yet, just as he did of Joe! He is over 70 by now, and getting a little frail, but his voice and his enchantment are still there. He had us mesmerized for over 2 1/2 hours! Another cherished item for our bag of memories!

Tonight I do not have to cook. Joe's ophthalmologist from NY is in town (the lucky guy owns an apt on the Rue de la Paix, and a house in the Dordogne...)and invited us to a restaurant. That will be fun. Soon more. All our love. Bises, Sigun.

Sailor Hawkins said...

Yo Dan, There has never been a doubt in my mind that you can beat this. You are an amazing person with great strength, courage and spirit. We who love you and your wonderful family from afar send gifts of love, prayer. energy and lilght. Many days I have have hurled prayers to the sky, this beautiful Colorado sky. I think of all of you with great love and care.

There are many new successes in medicine and I have had six successful years working with my dog fighting her cancer. I have used a combination of Pau d'Arco Tea and Transfer Factor Products. Know

Ingrid said...

Too long I did not write you.
Too long ago I left Denver.
So let me tell you a bit what was happening here.
I arrived from Denver, just had enough time to undo my luggage, make a lot of laundries, cleaned the apt again, Elena was terribly sick with a bad cold, I got the same cold too, my diab was getting crazy, when I get to know, three days before leaving for Vienna for Christmas, that a previously taken decision of not making gifts to the adults was reviewed. So I started to knit and crochet like crazy, even all night long, did not sleep at all, thought I will sleep in the train overnight to Vienna, but don't you know, my cold was still so bad, I couldn't even breath, so I did not sleep one more night.
Byron in the meanwhile had so many problems that he was sooooo stressed that every phone call was mostly a mess.
But time goes on, and Christmas comes.
I tell you, I could not enjoy it this year, between Byron's problems and YOU, I just couldn't take it.
Every gift I opened, or I watched opening, I only could smile a little bit, but my thought was: Also this does not help Dan!
As if I was waiting that somebody would open a gift that was the solution for you, but that did not happen.
So I come back to Siena, again undo the luggage, get laundry done and prepare for the New Year's Eve.
And here the 28th December comes, when I finally stop everything to read the blog. And I was speechless. Just like Arlene said:
I am not usually at a loss for words. However, at this moment I am.
I was searching positive thoughts and could not really find them, it was terrible.
But life continues, New Years Eve approached and Elena and her friend Margherita had a big dinner here at home and I had to leave, because they wanted to stay alone.
For good luck, Margherita's mom took me out for dinner.
New Year's Eve is an extremely important evening for me, but again I couldn't enjoy it, Byron was sooooo stressed, I was ashamed for not having written already something to you, but again time goes on.

Well, here I am now, it is already the 4th January, but YES, I want to say it out loud: HAPPY NEW YEARS!!!
And as much we are all worried, yes, I still see you here in Siena, sitting outside on top of a hill, meditating and enjoying the beautiful countryside. Just like Sigun sees you coming to Paris for another New Year's Eve.
I will not give up, I admit I have been weak the past few days, but here I am again, we will win this battle and then the next one with the prostate cancer, and then the next one with possible side effects, so one after the other, it is tough, terribly tough, but you will win this war. I know so, and I know that YOU know so too.

A biiiiiiiiiiiiiiiiig hug to YOU and to my beloved SUSAN and sorry for my delay.

Mike and Marta said...

Hi to all the Patterson's,
We're so sorry to hear the disappointing news. We know that this is just a temporary way-station on the road to wellness. We are just back from Thailand. It was a wonderful trip. We bring back with us blessings from a Buddhist monk for you. I know you will take all the blessing you can receive. We will see you both soon. We love and pray for yoou all.
Mike, Marta, Kurin, and Kaeli